Griffin's Recent Appointment With His New Doctor & "Avonte's Law" Tracking Devices For Autistic Children

Griffin's Doctor's Appointment Went Well, January 27,2014, With Dr. Vincent.


Yesterday, Griffin, his Intensive In Home worker, and I attended a polycom conference with Dr.Vincent who I now admire and think that she is the bee's knees! She was so good with Griffin, so patient and understanding that he was becoming impatient, and she praised him for it as she tried her best to make the appointment as quick as possible......yet very thorough. She went over his history, asking all the vital questions and answering all of my questions satisfactorily in a timely manner. Griffin's worker only spoke up when he felt that perhaps the information he had was pertinent and germane to the topic at hand.


In my hurried exit out of the apartment with Griffin and Abby (the service dog), I had forgotten the questions I wanted to ask but between us we decided that he would start with a new anti-psychotic/mood stabilizer: Geodon, which I have taken before. In order to titrate off of the Risperdal which in my opinion is one hell of an EVIL medication causing nothing but problems! It raised his triglycerides, his weight (he was becoming obese) due to the fact that it made his appetite so ravenous that I couldn't keep him satisfied with food day/night, and it caused him to have to start taking Metformin for his blood sugar because he was becoming pre-diabetic and that is without eating sugar (she even said that he had Gynacamastia "male breasts" from taking it so long) .
So, hopefully the Geodon will mellow him out, stop the hallucinations, and balance his appetite again so that he can remain at a healthy weight. Then when he does begin exercising on a regular basis, it won't be so difficult for him and unpleasant.


Griffin had perfect patience, I was so proud of him....he didn't even get upset after we got out of the building which is what he usually does. He has his moments of triumph when he deserves a great deal of praise for his behavior and I told him that if he continues to have good behavior then I will pick him up on Friday from school and that we could go to the lake. After all it will be his 12th birthday!!! He wants to go to Fun Depot Saturday. I think that it would be a blast for us to go play together, besides we are best buds and we are super close to one another regardless of the spontaneous outbursts of bad behavior. It is all part of having autism, the brain is simply wired differently and oftentimes we get sensory overload and frustration takes over and self control goes out the window. But fortunately, it is quick and over in a matter of minutes if one knows how to cope when it rears its ugly head.


We have got to teach Griffin the skills now on how to cope with his anger/frustration with objects and people so that once he is in middle school and out in the general public then he will be able to socialize (only if he wants to) and focus on the task at hand while tuning out all the other sensory input that is distracting him. This is the concept that is so difficult for neuro-typicals NT's to understand is that our senses are working overtime 24/7 every single day of the year. It is like a fight or flight sensation that is constantly running through our bodies rushing adrenaline through our veins as though we are under attack. And our senses are under attack from either: too strong an odor that is making us sick, to a tactile sensation on our skin or other surfaces of our bodies that either is hyper-sensitive or is under sensitive to pain, food flavors, or clothing on our bodies, there is sensations of sound that when we hear certain pitches of noise it literally hurts our ears and causes sheer confusion and frustration from wanting to get away from it so badly. The visual sensations of light that hurt our eyes such as fluorescent or even natural light from the sun can cause a meltdown just because the light is so bright that it feels as though it is attacking our eyes so we always go into defensive mode and act out in some manner. Whether it be mood swings, which makes it common for misdiagnosis of Bipolar Disorder, and meltdowns, anger, rage, that is out of control. And this is why I was misdiagnosed as having Bipolar Disorder years ago, because nobody knew what to look for in an autism individual as a psychiatric patient. Those types of doctors typically do not study autism and are not able to diagnose it. One has to go to a specialist who has experience with autism.


That is until we learn the skills to assimilate into society and conform by imitating what we see or are taught to do to fit in. This is what Griffin is being taught at school however, I allow him to be himself while he is at home (within certain parameters) and out in public as long as he is cordial, uses his manners, and keeps an inside voice. My philosophy is that he didn't come into this world asking to be autistic with special needs so why should he have to conform and make himself full of anxiety all the time around other people just to suit their needs and desires? If people can't accept that he has autism then they can go jump off of a cliff with their judgment attitudes. Nobody is perfect, Nobody is "Normal" it is just a setting on the dryer......and nobody has the right to judge my son for who he is whether they realize he has autism or not.


Furthermore, my entire life I have known that I was different, that I didn't fit in and that my parents were taking me to psychologist/psychiatrists to talk for some special reason, after all my siblings weren't going. I knew that I wouldn't talk to anyone or look them in the eye because I was always being told to "speak up" and my chin was always being lifted by an adult's hand in order to try to make me look them in the eyes. But it was unnatural for me and extremely uncomfortable therefore their efforts were all in vain. I recall that my sense of smell was so strong that even the slightest "bad" odor would make me vomit, have migraine headaches and a few times I have passed out from being so dizzy. I have always been allergic to the sun even though I tried to fit in by attempting to get a tan by lying out in it and getting horrible sunburns, my blue eyes are exceptionally sensitive to the sun and to indoor lighting as well. Certain people's voices set me off especially if they are soprano, high pitched, and if they can't sing it irritates me to no end I could just scream! I am attracted to extra strong flavors in my food and if (when I had the money way back when) I had money I would be a food snob because I know what excellent food is and have the pallet for it.


These are but a few of the indications of autism through the sensory issues of the brain. The autistic mind is simply wired differently as is the entire nervous system therefore it understands the world in a whole different way. I have lived a lie my entire life trying to fit in as a good looking thin woman who attracted good looking men and always got the husband she wanted but now I am being true to myself and "coming out" as the autistic individual that I am. I have found only a small bit of support for my good news....and yes it is "good news" because I finally have answers to why I have been so unique and peculiar my whole life! I am reveling in it and seeking out support with other Aspies and Auties (Aspergerians and autistics) because I know that they will understand me. I have already found some people on YouTube who have given me insight and encouragement. The rest of the NT world will just have to learn to cope with me and Griffin being different because we are proud to be autistic!!!!!!!




Following is the definition of autism its signs & symptoms, and treatments.


Written by the Healthline Editorial Team | Medically Reviewed by Jennifer Monti, MD, MPH
Published on August 9, 2012

                                                                    

Autism is one of a group of neurodevelopmental disorders known as pervasive developmental disorders, which are characterized by impaired communication, impaired social interaction, and restricted, repetitive and stereotyped patterns of behaviors or interests. Autism spectrum disorders (ASDs) are used to describe three of the five pervasive developmental disorders, including autistic disorder, Asperger disorder, and a third category that includes pervasive developmental disorders that do not fit into the classic descriptions of developmental disorders.

Signs & Symptoms

Signs of these disorders usually become apparent in children by the time they are 3 years old. Autistic symptoms include a significant delay in language and cognitive development, while there is no significant language or cognitive development delay in Asperger syndrome. Because there are not significant language impairments in Asperger when compared to autism, Asperger syndrome may be referred to as "high functioning autism."
Symptoms can range from mild to severe. Some people may be considered autistic but function in society without issues, while for others, the condition can have a substantial impact on their lives and on the lives of those close to them.

Diagnosis

Autism spectrum disorders are found across the world, seemingly regardless of race or cultural and economic background. ASD occurs more often in boys than in girls, with a 4:1 male:female ratio.
The U.S. Centers for Disease Control and Prevention (CDC) state that the numbers affected by autism are estimated to be around one out of every 110 children in the United States. However, various epidemiological studies have found varying rates of the condition, ranging from between one out of 80 children to one out of 240 children.
There are indications that instances of ASD are on the rise, but experts debate whether it is an actual increase or rather a case of more frequent diagnosis.

Types of Autism Spectrum Disorders

As its name infers, ASD refers to a range of symptoms.
ASDs were first defined as disorders in the 1940s by two different researchers working independently of each other. Dr. Leo Kanner studied what would come to be defined as severe or classic autism. At the same time, Dr. Hans Asperger defined the condition that now bears his name.
Classic autism usually entails substantial problems in all of the areas affected by ASDS, while someone with Asperger usually has issues with behavior and social interaction but often does not have problems with developing language. The symptoms experienced by people with Asperger are often also less severe.
There is debate as to whether Asperger Syndrome is a variation of classic autism (high-functioning autism) rather than a separate disorder.
PDD-NOS is a classification given when someone is exhibiting signs of autism but does not otherwise fit into the categories of classic autism or Asperger Syndrome.

Causes, Treatments & Outlook

The exact cause of autism and other autistic spectrum disorders is unknown. The most current science demonstrates that there is not a single cause for autism but that the disease is multi-factorial with a strong genetic component.
There is no cure for ASDs. The most effective treatments involve the use of early intensive behavioral interventions to improve the function of the child. It is generally agreed that the earlier a child is enrolled in these programs, the better their outlook.

After the tragic and untimely death of an autistic 14 year old teen drown in New York City in the East river, Senator Charles Shumer is taking action to help all autistic children get tracking devices in order to diminish the number of children wandering/eloping/bolting off out of sight from their provider or parent.  

Oftentimes, the autistic child who is exceptionally curious about the world around him, will wander off away from safety without a thought of getting lost and not being able to get back to his parent/care provider. Just as Griffin will wander off no matter where we are, whether it be in the grocery store, parking lot, outside our home, or in the park or public facility. And all I am left to do is to cry out to him loudly in hopes that he is within earshot and that he will call back.

 

It is such a helpless feeling not being able to locate an autistic child for one very good reason: they love water! They are attracted to it and if there is any pond, lake, or river to be found then they are going to find it and it usually ends up tragically.....more so than what turns up in the national news.

  Lora

• Nearly half of all autistic children in the USA: 48% attempt elopement, which is 4 times higher than their unaffected siblings.
•  In 2008, Danish researchers found that amongst the autistic population the mortality rate was at least twice as high as it was than with the general population.In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
• More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number
• Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
• 32% of parents reported a “close call” with a possible drowning
• Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
• 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
• 40% of parents had suffered sleep disruption due to fear of elopement
• Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
• Half of families with elopers report they had never received advice or guidance about elopement from a professional
• Only 19% had received such support from a psychologist or mental health professional
• Only 14% had received guidance from their pediatrician or another physician

Source: Interactive Autism Network Research Report: Elopement and Wandering (2011)

Source: National Autism Association, Lethal Outcomes in ASD Wandering (2012)

 

Shumer proposes tracking device for children with autism. Go to this link for further details on the article.
http://www.wbng.com/news/local/Schumer-proposes-tracking-devices-for-autistic-children--242287571.html


Here is the website for a GPS tracking bracelet especially for autistic children..


http://www.locationbasedgps.com/triloc-personal-locator-gps-watch/

ADHD, Anxiety, and Autism? A Really Informatve Article...

ADHD, Anxiety and Autism?

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute

ian@kennedykrieger.org

Date Published: 

January 23, 2014

A boy with autism fidgets as he struggles to stay focused and calm in class. Down the hall, a girl with Asperger's Syndrome bolts from the class when her anxiety gets to be too much.
Are these behaviors just a part of autism spectrum disorder, or do these children have another psychiatric condition? Does it matter?
Some researchers believe that conditions such as Attention Deficit Hyperactivity Disorder (ADHD), anxiety disorder, Obsessive Compulsive Disorder (OCD) and depression are "under-recognized" in youth with autism, which, in turn, "hampers clinical care and treatment."¹ After all, how can you treat what you don't diagnose?
The cost of untreated conditions may be high. Depression, for example, may put someone with autism at risk for suicide, withdrawal and aggression.²
Health care providers have a variety of treatments for anxiety, attention-deficit, obsessive-compulsive and other disorders in their arsenal. "There is no specific treatment for autism, but there are treatments for many of the [other] psychiatric disorders that occur in children with autism," concluded one group of researchers.³

What's Known about multiple diagnoses?

Research into the co-existence of psychiatric disorders with autism is limited. Some doctors have believed that anxiety, obsessiveness, inattention and hyperactivity are part of autism itself. Until 2013, in fact, the manual that physicians used to diagnose psychiatric conditions told them not to diagnose ADHD in children with autism.⁴ However, many health care providers did so anyway, according to a study by the Interactive Autism Network (IAN).¹⁴
One group of researchers acknowledged the difficulty in learning how many people with autism have other mental conditions. "Various types of anxiety are believed to be so common in autism that symptoms of anxiety disorders have been thought by some clinicians and investigators to be aspects of autism," rather than separate conditions, they said.³
Studies have found widely varying rates of other psychiatric problems among people with autism, depending on the population studied and the methods used. Those co-occurring conditions include: depression (affecting 2 to 30 percent), ADHD (affecting 29 to 83 percent), OCD (1.8 to 81 percent), and other anxiety disorders (2.9 to 35 percent).^{1, 3, 5-8, 14}
OCD is a type of anxiety disorder marked by obsessions and compulsive rituals that are time-consuming and distressing. The huge variation in rate is likely due to different methods of assessing OCD and judging impairment from it.³
The new diagnostic manual, published in 2013, acknowledges that most people with autism have psychiatric symptoms that are separate from autism itself. About 70 percent of them "may have" another mental disorder and 40 percent "may have two or more" such disorders, according to the fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.⁹ That manual, sometimes called the psychiatrists' "bible," urges doctors to diagnose ADHD, anxiety, depression and other co-morbid conditions in people with autism when appropriate. A co-morbid condition is one that occurs along with autism.
A study of 112 children with ASD found that 70 percent of them had at least one other diagnosis and 41 percent had two or more, including social anxiety disorder, ADHD and oppositional defiant disorder (ODD).¹⁰ People with ODD have a pattern of angry or irritable moods, defiant behavior or vindictiveness.

Special challenges for people with two or more disorders

Having a child with more than one disorder presents special challenges to families, according to several parents who participated in the Simons Simplex Collection autism research project. In interviews, several said their children with autism spectrum disorder also have conditions such as OCD, anxiety, bipolar disorder or ADHD.
One mother, whose teenage son has ADHD and autism, said it can be hard teasing apart which condition is causing which symptoms. "I have a hard time deciphering which is which, the ADHD or autism," she said. One thing of which she is certain, "Without the ADHD medication, his aggression is difficult to manage."
Having a second diagnosis can lead to better, more effective treatment for the children, said parents in the Simons project. There are medications and therapies proven to work in both OCD and ADHD, for example.
Kriston Norris, whose family was profiled in "Learning to Adapt," said her son with autism was helped by OCD treatments after receiving an OCD diagnosis. She also sought help from his school after learning her son also has OCD. Knowledge of a second diagnosis can help teachers craft an Individualized Education Program (IEP) or school accommodations that address all of a student's needs, not just the main symptoms of autism.
For some parents, the pursuit of another diagnosis led to new insights into their child's challenges.
One mother said her son was diagnosed with autism at age 3 and bipolar disorder at 5. Her son always had problems with muscle tone, which was believed to be "part of autism," she said. However, in 2013, a doctor diagnosed her son with a duplication of the 15q chromosomal region, a genetic condition that may explain all of his symptoms. Doctors find these duplications more often in children with autism, intellectual disability or other developmental delays.¹¹
Her son's bipolar disorder falls into the general category of mood disorder, along with depression. Mood disorders are not uncommon in autism. Neither is medication use. A study of 1,605 children in the Simons Simplex project found that two out of five had used psychiatric medication, primarily ADHD drugs, antidepressants and "mood stablizers."¹² Mood stabilizers include antipsychotic drugs, seizure medicine and lithium, which is often used to treat bipolar disorder.
A smaller study of 160 children with ASD found that about one-fourth of them had a mood disorder and almost a third had "aggressive/self-injurious behaviors." That study found some children who appeared to have OCD, but researchers did not report the number because they could not "reliably" distinguish between OCD and "autistic rituals."¹³

The art of diagnosis

That raises another issue identified in several research studies: how do you diagnose certain conditions in people with autism if they have problems describing their symptoms? Even if a patient has some language, will he describe his emotions or obsessions in the same way as someone who doesn't have autism? "This type of information can only be elicited in older, verbal, less severely affected individuals," according to one research team.¹³
The psychiatric manual (DSM-5) offers some advice on this. A change in sleep or eating, and an increase in "challenging behavior, should trigger an evaluation for anxiety or depression" in people with autism who have limited or no language.⁹
But do the tools used to diagnose other psychiatric conditions work well when used with people with autism? Outside of a research setting, health care providers do not have "standardized scales" for assessing all other psychiatric disorders in people with ASD, according to the Interactive Autism Network study.¹⁴ That may complicate the process of diagnosing another mental disorder in someone with autism. A group of researchers tested a tool called the Autism Comorbidity Interview-Present and Lifetime Version several years ago; the tool would help doctors diagnose other conditions in people with autism. They concluded the tool was reliable but warranted further study among people of different ages, intelligence levels and verbal abilities.³
Thanks to scientific advances, doctors have come to understand that the boundaries between different disorders are blurrier than they believed just a decade or two ago. "Many symptoms assigned to a single disorder may occur, at varying levels of severity, in many other disorders," according to the DSM-5. Doctors will continue to use their clinical training and experience to sort it all out, the manual suggests.¹⁵
Paul H. Lipkin M.D., director of IAN, welcomes the changes in how children are diagnosed and treated. “While children with autism spectrum disorders share common social, behavioral, and communication difficulties, some have other developmental or behavioral problems that are not part of this diagnosis. With DSM-5, ASD is now considered distinct from these other conditions. This not only better highlights the individuality and special needs of each child or adult with ASD; it also allows family and professionals to target a person’s difficulties with more specific and, we hope, better therapies and medical treatments,” he said.
Thank you to the families of the Simons Simplex Collection who contacted us and who provided the idea for this article.

Tips For Working And Living With Individuals On The Spectrum

1 . Approach students quietly from the side to avoid startling them. Their peripheral vision may be better and it gives them time to process information that tells them you are coming toward them. Once they are startled, it can be difficult for students to calm themselves.

2. Use non-verbal communication (e.g., gestures) when you can. For example, point to the location where you wish the child/individual to be, put your finger to your lips to remind him/her to stop talking, or give a thumbs up when s/he is doing well.

3. Use literal, succinct and direct instructions. “First, put your coat in the closet, and then come to class.” Avoid idiomatic phrases or sarcasm that the student may not understand.

4. Use a calm, even tone of voice. Excited adults yield excited students. Practice your poker face.

5. Visual supports are beneficial even after the individual no longer seems to “need” them. Do not discontinue their use without a case conference discussion. In times of stress, these visual supports may be a great support.

6. Remember not to take behaviors personally, even when the individual has a perfect knack for targeting your most vulnerable attribute.

7. Children/adults on the spectrum often have poor social skills. It is part of the diagnosis. Insert naturally occurring lessons into the day as they arise. For example, prior to the event, coach a child to say happy birthday to a peer, raise their hand to answer a question, cover their mouth when they sneeze, say no thank-you to non-preferred treats, etc.

8. Give the student ample time to respond BEFORE you repeat instructions.

9. Structure is your best friend. When there is downtime, help students develop a repertoire of things they can do. For example, in line they can recite a poem in their head, count, read a book, make a list, etc. If there are too many choices, narrow it to two or three and have the child/individual choose.

10. If there is a given schedule, follow it. Prepare for any upcoming variations. Prepare in a manner not to enhance anxiety in anticipation of the change.

11. Information processing and sensory issues are more difficult when the child is stressed. Make sure they have strategies to use when overwhelmed. Perhaps a trampoline, pillows, punching bag (some may differ), therapeutic swing (check with Medicaid, sometimes they will cover the cost of it), squishy balls, yoga balls for deep pressure, and simply enough just a quiet space with little lighting if any where he/she can just have no sensory input and unwind.

12. Know the signs of anxiety or stress for your students: pacing, hand-wringing, cussing, flushed face, laughing, etc. Know what causes anxiety or stress for each student. Adjust your language and demands when anxiety is heightened.Try not to hasten their responses to requests and oftentimes repeating oneself will trigger meltdowns; therefore attempt to be clear and concise with requests and questions on the first time. Oftentimes if the question or request needs to be repeated it is best to put it down on a piece of paper if the individual can read or to draw a picture creating a visual tool for him/her to understand the situation much easier.

13. Do your very best to be a good listener so that the child/individual does not have to repeat him/herself again leading to a great deal of frustration. Once frustrated in this manner, they often feel misunderstood and difficult to trust, that the other person is not interested in them or what they have to say. Leading to lowered self-esteem often causing them to become even more introverted and closed off from society. This is coming from someone who knows first hand. If people are not interested in me and what I have to say in addition....they do not return my phone calls nor ever give me a call instead of me always calling them....I tend to turn away from them because it hurts my feelings, This is why it is so difficult for someone on the spectrum to maintain relationships. We have difficulty understanding why it is necessary to be interested in someone else's business therefore we have a habit of perseverating (repeating an action or talking on and on about the same topic for an extended period of time to the point of exhaustion). Then the "friend or family member" loses interest in talking any longer and then the individual is confused as to why the conversation has ended. I have found myself in these scenarios many times and many of my "friends" have stopped communicating with me because of it.....I suppose, because they won't come straight out and say it. See, now I am perseverating going on and on about this topic because it is emotional to me. I am a good listener but my problem is that when I listen I don't respond to what they are saying so it doesn't sound as though I am listening.

14. Individuals, especially children are extra vulnerable....even more so than the average person because of how their nervous system is structured. It is seldom obvious, other than meltdowns/rage &; sometimes affection but the other range of emotions are difficult for someone on the spectrum to comprehend. Those on the spectrum feel love and so very easily get their feelings hurt but seldom does it show due to the communication issues and the lack of the understanding of how social skills work.Contrary to common belief, individuals on the spectrum do indeed feel empathy and sympathy in fact more so than the average person....their nervous system is super sensitive including the main hub for emotions: the brain!

15. Spend time with a student before making programming judgments. Listen to and observe the student with input from family members, teachers/therapists or other involved staff before commenting.

16. When trying to extinguish unacceptable behavior, always identify an alternative skill or replacement behavior. And when you are targeting a behavior, be sure to choose your battles carefully. Sometimes focusing too much attention on a behavior may actually intensify that behavior. Sometimes just ignoring Griffin's behavior, as long as he is not in danger, is the perfect remedy but I have learned the difference between when it is best and when I need to step in and help him calm down.

17. Forewarn a student when an activity is about to end, even if s/he is using a timer.

18. Educate students using their knowledge, interests and fixations. Build lessons around these special- interest topics so that others see them as experts in something. This will help build self-esteem.

19. Stay in close contact with family members and physicians about what is working and what is not, especially when students are on medications. Always remember that it is true that the professionals do often know what they are talking about BUT....you are the advocate for your child and only you know what is best for your child.

20. Build in many small breaks, even in secondary school, for relaxation. Identify a safe area or safe person for the student to access when they are stressed. Put in the IEP accommodations/modifications so that your child gets all that he/she needs in the classroom for his/her comfort in order to tolerate sensory issues they might have or academic accommodations they might need.

21. Help find a social group, a club or some sort of organization that can connect them to peer mentors that are positive. Look into your local Autism Society for possible respite or after school programs sometimes they even take adult individuals on the spectrum out into the community.

22. Pre-teach new concepts so students can re-hear them in the general education classroom. This allows them to contribute to the classroom discussion and promotes their success when topics have been rehearsed.

23. When you are feeling overwhelmed by a situation, surround yourself with a team of people with whom you can brainstorm. Using the resources and the wisdom of others helps us to be more creative and problem-solve more effectively. Do your research and find the best professionals in your area, whom you can afford of course, always see if you qualify for Medicaid or CAP services in your area. Turn to your local Autism Society and local support groups for support. There are great people on Facebook who have supported me through many rough times who also have autistic children. I have a page: Single Moms Raising Autistic Sons which is a great forum for women to meet and discuss the joy and challenges they face.

24. The ultimate goal for any student is to have a successful adult life. No matter what the age of the individual, teaching specific procedures and skills and then fading support is essential for this to happen. Never lose hope for your child. Even if he/she has to live in a group home for the rest of his/her life at least they will be with their peers and not alone, they will be supervised and cared for long after you are gone. If one looks into the future he can find a home that is suitable for his young adult where he thinks that it might be accommodating and compassionate but this might take some time. So I advise to not wait until the last minute because oftentimes there are long waiting lists too....especially for the really good ones. If your child ends up getting a job and living alone then that is true success and probably what you had dreamed of.....what every parent wishes for their child. But if not then don't beat yourself up...it's not your fault! Griffin's adaptive skills are so low that he will undoubtedly never get a job not unless he is working under very close supervision of someone in a very contained environment. I do have dreams for him....I wish that he would be able to work outside with birds, his favorite animal. Perseverating again! 

25. And finally, enjoy working with these students. They have many gifts and talents. Building a strong and positive rapport may be your most effective tool. Praise the skills that the child has not their work alone simply because if they think that :"this" is okay like it is the way I did it now, then I don't have to do it better in the future. In other words....why improve on it if you praise it for how it is now? 

Note from Lora: Expression and communication is the hardest thing for me and it has always been....even when I was head over heels in love with my Greek husband who ended up breaking my heart. I seldom laugh, cry, or even smile for that matter but that is what comes naturally to me. I feel happy with Griffin and I tell him, I show him every day but we still have communication difficulties and misunderstandings. So we spend a great deal of time in our own space because our sensory issues are such that if we were too close together it would be uncomfortable literally.....we would both have even more anxiety. When it is time to snuggle and be affectionate and talk at the end of the day we spend about an hour alone in the peace and quiet in the darkness void of any sensory input.....just the way I love it. In that darkness, I feel more bonded to anyone or anything that I have ever felt in my existence. I want so badly to protect him from all this pain that he is going through, all this trauma, I feel as though I am more than just his mom I am his best friend because we do everything together and it has always just been the two of us. We love each other unconditionally, he tells me once in awhile that I am a bad mom for not listening to him but I know not to take it personally because the next day.....I am the BEST MOM IN THE WHOLE WORLD!

Hallucinations and Furries

Griffin's auditory and visual hallucinations continue but the ones that I think disturb him the most are the auditory. He tells me that he hears animal sounds through his nose, most recently he reported that he heard a Capigian monkey in his nose and went into great detail about it. He is so afraid that he cannot go to sleep alone, he has nightmares so bad that if I do sleep somewhere else he ends up there in the middle of the night after being in the kitchen roaming around for awhile. This is after having put him to bed at 9:00, a decent hour for him to get up at 6:00 a.m. but apparently the hallucinations have a strong hold on him and the meds aren't working to help him sleep peacefully.

I have made it a point to keep him away from the computer and cell phone as much as possible and to increase our quality time together snuggling, talking about things that bother him, things that he wishes for, and things that he dreams of but he is in puberty now and needs his alone time/privacy as well do I so we each have our space every day that we keep to ourselves. I believe that both are important and essential because I nurture our relationship and bond helping it to grow and progress while respecting one another's individual needs for space and privacy.

While we were having one of our bonding moments talking to one another cuddling, Griffin confessed to me that he had secretly been liking 2 girls one named Sonya and one named Kathleen and he didn't know which one to marry. I had to hold back the grin and remain serious as to not hurt his feelings as I explained to him that he is too young for marriage and sex that right now all he should be doing is talking to girls.....but not about sex or body parts. With autism one has to be very straightforward and clear there can be no ambiguity no blurred lines. I told him that he can talk to both of them that he doesn't have to choose between them. He told me that he liked Sonya because she was fat and that he liked how she was squishy. Then I had to grin I couldn't help it. He said that he thought that she was very pretty. I told him that was very nice. I told him that it was nice that he sees her for the person that she truly is and that he has a big heart. Of course then I had to explain what "a big heart" means because with autism individuals take things literally. With autism and Asperger's individuals don't read between the lines when one tries to drop a hint or beats around the bush, speaks sarcastically, the individuals do not pick up on it like neuro-typicals do. There is just a confused person when one does that to them.

There is so much on the Internet that is great for him to see and enjoy because he laughs so hard most the time as he watches old commercials from the 60's, 70's, 80's, & 90's. He is so into advertising icons and representations of commercials from old TV ads. He even has the songs/jingles memorized and the features of the cereal boxes, candy wrappers, etc...He also loves old TV shows like Andy Griffith, and Full House.

Griffin is a "Furry" that means that he has a fascination with the world of furry animals such as animated animals. He still has a room full of stuffed animals and is closely bonded to them, keep in mind that his mentality is that of about a 4 year old even though he is about to turn 12. He has a Big Bird in which he is very tightly bonded to that he has had since he was 2 years old that a young man so kindly gave to him in a Goodwill store in Anchorage, Alaska. We were shopping but didn't have enough money to buy it but Griffin grabbed it and wouldn't let go so the clerk gave it to Griffin....I will never forget him. Griffin is lost without this stuffed animal and in fact all of them. If I tried to take away any of them he would know exactly which one was missing and would go bezerk until I got it back. Being a Furry means that an individual grows up loving furry things more than the average person, usually these people (who have their own community and website: look up "Furries") dress up like animals, sometimes they isolate themselves exclusively into their own community because nobody else understands them.....which I completely understand how that goes. They have conventions where they dress up not saying that Griffin will ever go that far but when I looked up the definition and description he fit it. Mostly because he is so fascinated with animation, animals, animated images and videos, cartoons, and comics. Not to mention Sesame St., Barney, Kratt Brothers, his love for birds & cats, and anthropomorphic (animals dressed up as humans) characters such as Arthur.

His therapist told me yesterday that he will have to be in a group home when he grows up due to his adaptive skills being so low (those are his skills of how he can take care of himself as an individual without assistance). And I told him that "I know that, I have accepted that....." But that doesn't mean that I don't worry about it. He will be safer in a group home, I only hope that we can find one before I pass away that will treat him right and that he gets along with the other members. Group homes have a high turnover rate and one never knows how the members are being treated when they are having meltdowns and they are not being monitored by their superiors. Also there is a possibility of Griffin running away from the group home, that is not uncommon at all. But I have got to let go of that for right now because that is in the far future and I have too much to deal with right now. However, I do have to think about how I am going to pay for his group home or someone is. That, I do have to do NOW. I have to organize funding on services for him now so that it will be set up in the future. Most people think that it is too far away to think about but really the way the system works, as slow as it is, one has to start now in order to get what we need in 6 years or so. He may not need a group home at 18 years old, he may still be with me but I have got to be prepared.

Here are some pictures of Griffin with his cat "Dot" who he loves dearly. She loves him too.

Here is Abby our service dog of 11 years. She is retired now and actually, sadly, I may have to euthanize her soon because she is in so much pain in her hips especially because of the weather. She is pretty old about 12 or 13 maybe.

 Here is Griffin with his great Aunt Gail who now lives in the Brian Center, she loves seeing Griffin and getting his drawings.

 Griffin loves to listen to videos on the computer but I think that we might revert back to speakers so that I can hear what he is listening to and monitor what he is doing. Gotta stay on top of that stuff, ya just never know. Mostly he is really good about being appropriate but there are sharks out there waiting to get him.

This is Griffin at the lake, our very favorite place to go in the whole area because it is so peaceful and there are ducks and geese to feed. It is as good as meditating. It really calms our nerves and soothes our senses.

MISUNDERSTOOD AND I LOVE MY PARENTS

I feel like the whole world misunderstands me and that they always have since I have my first memory I have been a social misfit. Perhaps not in some people's eyes such as my families because I had to put on airs and try so darn hard to fit in, that is part of the reason why I had anxiety as a child so badly to the point of making me vomit in my sleep and sending me to the hospital numerous times.....my poor parents, what they must have been going through they must have been so perplexed as to what was going on because the doctors weren't helping. My parents ended up taking me to the University of North Carolina in order to find out what was wrong with me because the doctors at home couldn't help. Then the only sorry answer that they gave that my parents tell me now is that they said it was a "nervous stomach". I beg to differ!

The other part is that I have a severe communication problem and always have since childhood. I can't make words come out when I want to say them and instead I just keep it all inside and it all contributes to my anxiety even worse. As a child, I would for example need to use the restroom while in the classroom and would be so terrified of the teacher that I couldn't tell her that I had to go so instead I just went right there on her carpet or right there at the chalkboard. One teacher even kept a change of clothes for me because it happened so often, she was my favorite teacher of all time....she was so kind and understanding to me. No matter the circumstance the words just don't come out right even if some do. People misinterpret my message because of the tone of my voice which I cannot help....it is mono-toned. They apparently think that I am being sarcastic when I am not then that hurts my self-esteem and my feelings and makes me feel like there is something wrong with me. I have always felt this way.

I seem depressed and negative most of the time and do not show emotions but that is how the mind of someone with Asperger's works, it is not my intention. It is literally how the brain is made up, the shape of it and size of certain areas of it that are different than that of a "neurotypical" or what most people say a "normal" brain. But to me "normal" is just a setting on the dryer because nobody is normal. I walk around and even sit around in constant overload all day long. I am constantly in a state of anxiety and sensory overload, always overwhelmed even in my own home. God forbid I go out in public! It is exhausting! Talking to people and being around them overwhelms me to the point that I get sick to my stomach and panic. It is a fight or flight mechanism.

After elementary school I had to make it on my own with only a few friends who were misfits like me, of course I didn't know then that they were misfits but in hindsight I do now. I started getting into trouble as a teen and drinking to numb the pain because I felt that I had no one to turn to who could guide me and help me understand myself and why I was so different. I spent as much time possible alone away from my family and friends listening to music and writing in my journals. Writing letters to a man who was 5 years my senior that I had no business getting involved with in the first place, I was only 15 years old. and easily manipulated.

Now I have been through 5 marriages and serious mental health issues for years undiagnosed and diagnosed; with good doctors and meds, and without good doctors and meds/unstable. I am very stable now and quite able to take care of myself and Griffin, we live alone in solitude but we are happy that way. I only wish that people could understand that I do have empathy and feelings even though I don't cry or laugh, that I do need love even though I may not show a lot of affection or act like I am in need, and that even though I may complain about my life it only means that it is a cry out for help, attention, love, compassion, and understanding. My mind works differently than others because I have not only mental illness but I also have Asperger's Syndrome and I cannot help that I make mistakes. I need to be love for my deficits just like Griffin does and yes I am held accountable for a faux pas but only if one tells me that I made it. Sometimes I don't even realize that I made one.

I love my family and all they are about. I am happy that I have the family that I have, especially my mom and dad. They are very special to me. My mom calls me every morning to wake me up to make sure that Griffin gets on the bus and takes his medicine. Isn't that wonderful? I am so blessed. How wonderful that is.

My parents took great care of us and I am proud to call them my parents!

The Unique Grief of Special Needs Parents by: Sheri Dacon

My boy was smart, and I knew that all too well.  He was high functioning, and I was confident that we would be able to help him overcome any obstacles before starting kindergarten. By the time he started school, no one would even know. They might just think he was a little quirky. Plenty of people are quirky. No big deal.
So I spent that first year with few cares at all, reading a handful of books, learning about social stories and visual schedules and the basics of Asperger’s, convinced that we would be past all of it in a couple of years.

Then kindergarten came, and my world got smashed to pieces. 

Things didn’t work.  The new school, the new teacher, everything we had prepared for. . . it broke faster than I could scurry around and pick up the pieces.  Less than six weeks into the school year, we requested an ARD meeting and moved him to an autism program at a different school.
We are four years further down the road now.  The social differences are much more noticeable at age nine than they were at five.  Instead of getting better, in many ways, the disability has worsened.  
I don’t know what it is like to lose a child.  It breaks my heart when it happens, because I’m not sure if or how a parent ever recovers from it.  Yet I know brave souls who somehow go on after a child’s death.  I can’t imagine what the grief is like.
There is a kind of grieving that exists as well with having a special needs child.  My child is very much alive, and I am so grateful, especially since I have witnessed his seizures and considered the possibility, if just for that split second, that he was dying.
But the hopes and dreams I had for my child die a little more each day as I watch him move forward in life.  When he was just five or six, I had hope that he would outgrow certain behaviors with age, that he would function better.  It was that hope that kept me going.  Yet here we are at age nine, and while some behaviors have improved, others have declined.

It is hard to hope when your child pushes against an ever stronger current. 

Adolescence is just around the corner and it is scary.

The grieving never ends.

If you let your guard down for even a moment, some terrible incident will come slamming into you, reminding you that your child will never be like the others.  He will always be different.  

Slam.

To accompany the grief, there is its sister–guilt.

Guilt that I did something to cause it.
That I should have noticed the signs sooner, gotten more and better treatment, sought a different course or path.
That I should be doing more, reading more, helping more, trying harder.
That I should spend more time, more money, more effort supporting my child.
That I should experiment with a different therapy, a different drug, a different teacher, a different diet.
And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.
Sometimes it brings me to uncontrollable sobbing.

photo credit: jazbeck via photopin cc

I can’t make the grief or the guilt go away.
My thirteen year old and I got into a shouting match one day about it.  “Why don’t you and Dad do anything?  Why don’t you make him behave?“  he yelled.
With hot tears washing my mascara away, I argued back, “What would you have me do?!?  I’ve tried everything!!  Please, tell me what to do!!  Tell me!  Is there another book to read?  Another therapy?  Another anti-psychotic drug?  I’d love to hear your suggestions!”
Not my finest parenting moment.
And yet if there was one thing I’d want parents of non-special needs kids to know, it’s to please be aware that we — the moms and dads of those “special” kids — are hurting.
Yes, we love our kids.  No, we wouldn’t trade them for anything in the world.  But the love we have doesn’t take our pain away.  In fact, it just intensifies it.  Because we can’t take their hurt away.  We can try and try and try, and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away.
When you look at us like we are weird, when you stare and ogle, when you move your kids away from ours, or worse, NEVER include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.
For my son’s ninth birthday, we sent printed invitations to school.  We invited the entire special needs class, as well as the entire regular class.  The invitations indicated that we were serving pizza and that families were welcome.  We wanted to make sure people showed up.  So we bribed them with free food.
Fortunately, all my son’s special needs friends came.  We have to stick together after all, because special needs kids don’t get invited to that many parties.

One boy from the regular class came.  One.

That’s enough to just break a momma’s heart right in two.
My anxiety directly correlates to Travis’ behavior.  When he’s doing well, I usually do okay.  When he struggles, I get worse.  I’m sure it could be defined in some complex mathematical formula.  All I know is that when he hurts, I hurt more.

And he always hurts.

So next time you are at the Chick-Fil-A playground, or at a church picnic, or a Cub Scout campout, try looking at those “weird” kids and their parents a little differently, please?  Try to remember that as unlovable as that child might seem to you, the parents are desperately in love with their baby.  They are hurting.
And by being a friend instead of a judge or a finger-pointer, you might just make somebody’s grieving a little easier.

http://sheridacon.com/2013/12/17/unique-grief-special-needs-parents/#

• Thank you. You have so perfectly articulated what it feels like to be a parent of a special needs child. This blessing has demanded that we grow and change in a way that I feels others will never understand, we have the gift of seeing the world in a much more basic way. We are blessed to see what is truly important, to love and to receive love. Thank you for fighting the good fight.

  
  
  
  

   

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    Sheri Dacon Mod Amy Jones Gardner

    • 17 days ago

    
    

    Thanks, Amy. I agree wholeheartedly that having a child with special needs has helped me to grow and to have more compassion and empathy for others. While painful, it is a unique blessing -- I love how you put it -- a gift of seeing the world in a much more basic way. I feel like my child with Asperger's is how God has opened my eyes. Thank you.

    
    
    
    

     

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  Belinda Parks Katz

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  First, I so enjoy reading your posts. This one made my heart ache for you and your son. I know I'm only one of his teachers, but you are doing a phenomenal job and I so appreciate you. Know that you are teaching the public with every experience you encounter.

  
  
  
  

   

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    Sheri Dacon Mod Belinda Parks Katz

    • 21 days ago

    
    

    Belinda, you are such a wonderful teacher for Travis & an encouragement to us. We love your heart for special needs kids & always feel Travis is safe & well cared for when he is with you. Thank you.

    
    
    
    

     

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  Rubye Dacon

  • 22 days ago

  
  

  Sheri, I am sorry that your grief is relentless, but I understand for it visits me often too. Take a lesson from the boxing ring--when the bell rings to signify the round is over, the boxer goes to his corner for rest and to have his wounds tended to. He doesn't feel guilty that he is not still in there punching away. Enjoy your well-deserved vacation.

  
  
  
  

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    JOJO Rubye Dacon

    • 5 days ago

    
    

    Rubye, it seems like you know this author, so please forgive me if I am overstepping my bounds. I just wanted to point out, your analogy is a good one and I wish I could share your sentiment. But, as the parent of a child with special needs, the bell never rings. The 'fight' is never over.

    
    
    
    

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      Rubye Dacon JOJO

      • 5 days ago

      
      

      Not at all, JoJo. I was just commenting on her opportunity to have a vacation and "step to a neutral corner" if only for a few days. She said it was the best vacation ever and I was happy to care for her family so she could go. Thanks for supporting Sheri.

      
      
      
      

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      Sheri Dacon Mod JOJO

      • 5 days ago

      
      

      Jojo, I see that Rubye already replied, but yes, she was referring to our much-needed vacation in Jamaica! Rubye is my mother-in-law and she kept the kids for us so that we could get away!! She's the best!

      
      
      
      

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      Warren Zeigler Sr. JOJO

      • 4 days ago

      
      

      There are things in a protected environment like home that the child can do well in their own eyes and not harmful in yours. Those can often be a respite from the boxing ring.

      
      
      
      

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        Rubye Dacon Warren Zeigler Sr.

        • 4 days ago

        
        

        Warren, this is great insight and helpful to me.

        
        
        
        

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  Kathy Jenkins

  • 22 days ago

  
  

  I have walked this road too. my son is 20 and there are still times I ache...still times I am angry at God...not for giving me a child with a disability but because It seems unfairt that he will always have to struggle. yes there are times of celebration and laughter and no I wouldn't trade him for anything...but...

  
  
  
  

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    Sheri Dacon Mod Kathy Jenkins

    • 21 days ago

    
    

    Oh, Kathy, yes. There is so much joy & learning. I am grateful for my son because he has taught me so much. Yet at the same time there is sadness. Prayers for you this morning.

    
    
    
    

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      Kathy Jenkins Sheri Dacon

      • 21 days ago

      
      

      And for you as well!

      
      
      
      

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  Christy

  • 17 days ago

  
  

  It's good to see that others feel this way too. I tend to run into the parents that don't understand why I feel sad sometimes. They seem to be perfectly content with their child's diagnosis. While I admire those parents, I thank you for posting something that doesn't leave me feeling more inadequate than I already feel much of the time. I felt the most grief during the initial year of my son's life. The day after he was born, we found out that he had Down Syndrome. It's not that I didn't love him, I love him more than anything, but I was devastated. I cried every day for about the first six months of his life. I believe I was grieving the baby I thought about the entire time I was pregnant. I didn't get that baby, therefore I grieved. I guess it felt somewhat (but not exactly) like losing a child. People didn't really understand that, but it was real grief. I used to absolutely hate it when people would tell me what a blessing I was given to have a child with Down Syndrome... I agree that my son is a blessing, but I didn't and still don't agree that him having Down Syndrome is a blessing. I would do anything to take away his struggles. I do agree that there is much joy that raising a child with special needs brings, but there is also a lot of heartache. I always feel like I have to be strong and hide the heartache, because the minute I let my guard down, the corny sayings start, or I get the confused head tilt, "Why do you feel that way?" He's 5 now, and I don't feel as much grief anymore. He's a little sweetheart and he's healthy. Now that's a blessing! We do get a lot of flack for his behavior in school, and we try so hard to help him learn. It's a long process that most people don't understand. In IEPs the educators and therapists seem look at my husband and I as if we are inadequate parents, making all sorts of "helpful" suggestions. I just sit there thinking, "Do they really think we haven't tried that?" I've finally arrived at a place where I'm learning to separate my ego from his behavior. I know how hard I try and work with him. Now I put a little bit back on them. I've learned to ask them questions like, "What tools do you have in place to help him with that (behavior)?" It kinda stumps them sometimes, but it opens up the idea that his behavior at school isn't ONLY the parents responsibility when it comes to a child with special needs. It's an entirely different environment than home, and a whole different set of rules. I know that schools have access to resources (i.e., behaviorists) that can help them too. Anyway, I'm rambling on... thank you for your post.

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    Sheri Dacon Mod Christy

    • 17 days ago

    
    

    Christy,
    How I wish I could hug you right now! Thank you so much for honestly expressing both your love for your child and the pain that comes with such a diagnosis. I especially feel for you because unlike an autism diagnosis (which usually takes place after a long path of trying to discover what is wrong), a diagnosis of Downs happens definitively at once and must feel like a ton of bricks falling upon you! How my heart goes out to you! If you haven't read a piece called "Welcome to Holland," by Emily Perl Kingsley, please do so immediately! Just do a google search and it will pop up. It expresses this idea of grief mingled with joy better than I ever could. Also, I just finished reading a book by Gillian Marchenko called Sun Shine Down. She has 2 children with Downs (one her natural daughter, the other adopted) and the book is her memoir from when her daughter was born and the roller coaster of emotions she went through. I think you would really be able to relate. Undoubtedly there will always be some heartache that walks hand in hand with his diagnosis but there will be so much joy and love and wonder (as you have already experienced). I have found that many people who mean well but who have not experienced special needs close up often don't understand this dance of grief and joy, hence the puzzled looks. Just know that you are not alone. There are many who do understand and "get it." Thanks so much for reading and for sharing your experiences. Much love to you, dear friend.

    
    
    
    

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  Kate Kettlet

  • 18 days ago

  
  

  Sheri, I read this and just cried. You put my feelings and thoughts down so eloquently! I also wanted to let you know that there is always the possibility of a light at the end of the tunnel. My son has been diagnosed PDD-NOS. His doctor prefers that diagnosis over Aspbergers because of the way that it can effect his IEPs at school. Kyle is 16 and for exactly a year now we have been non-medicated! We haven't had a violent episode where the Police were involved since March of 2012. He still attends school in the special school district but things are going better than I'd ever hoped for! I wish the both of you and the rest of your family the best. Always stay positive and cherish the moments, good or bad.

  
  
  
  

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    Ann Kate Kettlet

    • 17 days ago

    
    

    What is PDD-NOS?

    
    
    
    

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      Kate Kettlet Ann

      • 17 days ago

      
      

      Pervasive developmental disorder, not otherwise specified. It is one of the three autism spectrum disorders and although typically considered to be on the more mild end, this was not the case for my son Kyle. We started getting help for him at age 3. There have been more diagnoses and medications than you can shake a stick at and it has been a long frustrating journey. His doctor also states that he is ADHD. I'm not sure what the turning point was for my son and for many children being non-medicated just isn't an option. There are many days that I think, "don't let this be the day that something bad happens." Even his doctor is amazed when we go for visits. In no way is my son like what most people would think of as a normal child, and he never will be. I worry about how people perceive him and what people think of him but he is blissfully unaware most times. In those instances where it does bother him, he internalizes it and refuses to talk about it. My biggest fear is what would/will happen to him if/when I am no longer here. Will I have prepared him enough for life on his own? What if he cant live on his own, where would he go or who would he live with? And most importantly, will he be happy? Or lonely? I read a comment from another young lady here that stated she had no guilt or shame, I wondered if she had no fear as well.

      
      
      
      

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      Jo Nathalie Ann

      • 17 days ago

      
      

      PDD-NOS = Pervasive Developmental Disorder, not otherwise specified. It is on the autism spectrum -- i.e. Atypical autism.

      
      
      
      

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        Ann Jo Nathalie

        • 17 days ago

        
        

        Thank you, I hope I didn't seem rude in asking and I mean no harm. I have a son on the spectrum as well.

        
        
        
        

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          Kate Kettlet Ann

          • 17 days ago

          
          

          I didn't find it rude at all, in fact, I appreciate that you asked. For me, I seem more comfortable just saying PDD or even Aspbergers but not autistic.

          
          
          
          

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          Sheri Dacon Mod Ann

          • 17 days ago

          
          

          Ann, I don't think anyone would think it was rude. There are so many letters and labels within in the special needs realm, aren't there?!? Sometimes its hard to wrap your head around them all! Thanks for posting!

          
          
          
          

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    Sheri Dacon Mod Kate Kettlet

    • 17 days ago

    
    

    Oh, Kate! I'm moved to know that you found this post so meaningful. It is a hard road, but I am so encouraged to hear that your son has been non-medicated for a year! By the way, I also have a son named Kyle (my 13 year old -- not the son with Asperger's). Thanks for reading and for your words of encouragement!

    
    
    
    

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  Robert Patterson

  • 7 days ago

  
  

  "Normal is just a dryer setting"... Please don't take this as an attack, but I'm saddened by how thoroughly autism has discouraged & defeated so many parents. I pray you come to accept your child & their lives' paths without the guilt of your preconceived expectations & perceived failures.
  I've never- not for one single moment!- felt ashamed or pained by my daughter. She is autistic, and perfect. We, as parents of a special needs child, have chosen & committed to celebrating the victories, not wallowing in the defeats.
  Restrictive diets work, one-on-one tutoring works, LOVE works (just don't expect cuddling in return), repetition works, HOPE works (regardless of your child's initial reaction), despair DOESN'T work.
  The pizza party paragraph made me cringe. I urge all parents of ASD kids to get a food sensitivity test done & work with a nutritionist experienced in special needs restrictive diets. You will be amazed. Once you start thinking of foods as they affect your child, you'll be able to identify & eliminate triggers of destructive behaviors. If your child is in pain, it could easily be the food.
  Any successful ASD adult will tell you that their success is directly linked to their parents' relentless pushing, stretching, and encouragement- those 3 words were taken from Temple Grandin. Alexis Wineman told my wife that her parents "pushed and often shoved" her beyond her comfort zone to succeed (that's her quote up there at the start of my rant).
  Pain & Grief for your situation serve no positive purpose in your special needs child's life.

  
  
  
  

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    Sheri Dacon Mod Robert Patterson

    • 5 days ago

    
    

    Robert,
    Thank you for your comment. I am glad for you that your daughter's diagnosis has never caused you a single moment of pain, but I assure you that is not the case for most people. I am sorry if my post led you to believe that I am defeated or in despair, because that was not my intention. I love my son deeply and he brings a level of joy to my life that I would never have known without him. We also choose to celebrate our son's victories and progress rather than wallowing in his defeat.
    However, he struggles. It is hard to watch your child struggle, to cry daily because he isn't accepted. It hurts to know that social situations will always be difficult for him, especially since he is a child who craves relationships (and we feel very fortunate that he does). Grief is the feeling experienced after loss, and any loss can qualify. Knowing that my child has a diagnosis that has and will cause him pain is a loss of sorts, even though I don't feel it is reason to despair. I did not give myself permission to feel grief over his diagnosis for a couple of years, and I feel it is so important to acknowledge the grieving process for special needs parents.
    I also do not feel guilty all the time, but I do think this is something ALL parents struggle with, and especially special needs parents. You say that my pizza party made you cringe, and that is fine, but any time I hear a list of all the things I'm supposed to be doing (restrictive diet, one-on-one tutoring, repetition, etc.), to be honest, I cringe. I cringe because I know all those things already. I've read all the books, gone to the workshops, tried most everything and still felt like I was failing. And that was the point of my original post. We special needs parents can work ourselves to death and still not change the diagnosis, and then we feel even more guilty because we haven't tried everything.
    Also remember that every child, parent, and family are different. What works for one may not work for another.

    
    
    
    

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      Robert Patterson Sheri Dacon

      • 3 days ago

      
      

      I misunderstood. I read despair in your words.
      Our approach to raising our special needs child starts with our attitudes (same as our approach to raising our non-special needs child). Attitude is everything. Hope, creativity, & stubbornness have gotten us this far- if just one parent of a special needs child "gets" what I'm saying & benefits from it, I'll jump for joy.

      
      
      
      

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    Lesa Robert Patterson

    • 4 days ago

    
    

    As the parent of a severely affected son with autism, I cannot help but take offense to this post. LOVE works??!!?? If LOVE worked, we would not be having this conversation because I couldnt LOVE anyone any more than my son. Autism has taken his voice, his independence, his health,his future, the ability to marry, work, care for himself, Autism has made damn sure that i will never rest in peace. AND YES We have done all of the therapies you mentioned above, because it worked for your child, please don't preach to me and tell me that if I just did MORE i would see more progress. THIS is the attitude that keeps us guilt ridden and isolated. I can say more, MUCH more, but i am too damn tired and too scared of being AMBUSHED by a strong beautiful boy who can throw me across the room and destroy my house in seconds flat. Then when he comes out of it, he sobs uncontrollably and feels so much remorse and gulit. Please point out the blessing in THAT! I am sick and tired of being invalidated by people saying if you just do more. I am beyond insulted and can't believe that a fellow ASD parent would be so willing to throw us who have children on the severe end under the bus. YOU DO NOT REPRESENT ME! And Sheri, i am sorry to hi-jack your beautiful article
    but i am sick and tired of being preached to by people who obviously know it all.

    
    
    
    

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      Robert Patterson Lesa

      • 3 days ago

      
      

      Sorry that I offend you so much. There's no bus here, and I wouldn't presume to represent you. My job is to represent my child, & I chose to share what helps her- again, sorry that it offends you.
      I see that I was preaching (according to the dictionary), & I will continue to "preach" hope & determination as long as I live.

      
      
      
      

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    Ann Robert Patterson

    • 3 days ago

    
    

    You say despair doesn't work. Fine. It's still present sometimes whether we want it to be or not. Love, hope and repetition do work in some areas. Other areas are always going to have deficits, no matter what we try. I'm glad you've found things that work for you. That's not true for all of us.

    
    
    
    

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    Warren Zeigler Sr. Robert Patterson

    • 4 days ago

    
    

    From the moment we are born and see that we are different, as in being able to sit, stand, talk, etc, we are all driven to be like others. For me it is inconceivable that the child is not hurting. If the child hurts and the parent doesn't feel it with them, then the child's pain seems to be ignored and taboo. That never solves the problems with others or the future.

    
    
    
    

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  Bethannee Crabtree Witczak

  • 17 days ago

  
  

  This is the first post of yours that I have read...and it brought me to tears. My story is similar to yours and reading your words made me feel a little like I was being hugged. Thank you for articulating the fears and joys and questions that live in my heart and head every day.

  
  
  
  

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    Sheri Dacon Mod Bethannee Crabtree Witczak

    • 17 days ago

    
    

    Thank you for reading, Bethannee. I wish I could hug you for real right now! Sometimes it's just good to know we are not alone. And you are not alone, dear friend. Much love to you.

    
    
    
    

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  Zarir Karbhari

  • 18 days ago

  
  

  Heart Rendering and so so true, hang in there Sheri, we all have to ... our little warriors are our lives and our very souls.

  
  
  
  

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    Sheri Dacon Mod Zarir Karbhari

    • 17 days ago

    
    

    Thank you, Zarir! So true!

    
    
    
    

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  Denise manias

  • 7 days ago

  
  

  I manage swim lessons that feed into the local swim team. At the end of the session, I send out emails to the parents of the kids who we think are ready to try out for the team. One of our little guys in lessons clearly had autistic "issues" BUT, he was a good little swimmer. I sent his parents an email invitation to try-outs. The next lesson, they came to me sure that I had made a mistake. Their son had been "chosen"; he had been found "worthy" of trying out for the team.
  I assured them that it was not a mistake - their son had earned the opportunity just like the other kids. It broke my heart that their past experiences had conditioned them to expect exclusion. I assured them that I recognized his autism "issues", acknowledged that he would have some special issues with the team and welcomed him to tryout.
  I am happy to say that this little guy is doing fine. Does he have"stuff"? Yep! and he always will. BUT, can he swim? Is he having success? Is he being included in a "normal" activity. Yes, yes he is.
  To the parents of kids with special needs: please keep trying. Keep advocating for your kids. Keep looking for those opportunities. You never know where you will find them.
  Blessings!

  
  
  
  

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    Sheri Dacon Mod Denise manias

    • 7 days ago

    
    

    Thank you, Denise, for your encouragement and for your inclusive attitude as a teacher. We have been fortunate in our journey to encounter many teachers with the same mindset and we are so grateful for them. Unfortunately, there have been many who have been unwilling to overlook the disability to see the boy behind it! Thank you, thank you, thank you! I couldn't agree more.

    
    
    
    

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  Terra

  • 10 days ago

  
  

  WOW. Reading this sent me into tears. My Aspie is in 11th grade. We're talking SATS and college. He's on the genius cusp. He's so smart. And funny. And amazing. But he hates schools and tests. And all these *dreams* I had for him are unlikely. We will be relieved if he makes in into local state college. I should consider myself lucky. Things could be so much worse. But he's brilliant and amazing and *should* be doing something more.
  My friends don't understand. They just see this smart kid. They don't know the daily struggles would never understand.

  
  
  
  

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    Sheri Dacon Mod Terra

    • 9 days ago

    
    

    Terra, your son sounds a lot like mine in a few years. Definitely in the genius category and yet he struggles so much socially. It's good to know there are other parents out there who "get it." May God bless you as you continue to parent your Aspie, and lead him to the right path for his life as well! Thanks for reading!

    
    
    
    

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  April

  • 16 days ago

  
  

  Just to help you feel a little less separated, I recently had my son's birthday party and only 3 of the invited 15 showed up. He has no special needs and is well accepted in his class. Parents these days just don't bother showing up or even RSVPing these days. I don't know why. It's nice to know that the special needs class all showed up and that involved parenting and community support still exists somewhere!

  
  
  
  

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    Sheri Dacon Mod April

    • 12 days ago

    
    

    Thank you, April! Yes, we have dealt with similar issues with my other three children as well--however, none of them deal with the problem of being stigmatized that my autistic son does. It's hard to explain -- I remember when I first applied to get him tested and I kept telling the doctors that he was just "different" and I couldn't explain it. I just knew they were all going to think I was crazy! Now I realize that it really is different! And yes, the special needs parents at my son's school are wonderful -- we are very blessed.

    
    
    
    

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      Bird Sheri Dacon

      • 8 days ago

      
      

      My kids always have the problem with friends being at the "other" parent's house for the weekend we are doing their b-day parties and so only 2 or 3 kids can show up. It's sad. Hurts my heart when my kids BEG for certain friends to come play or come to their parties and they can't. I don't understand it just because they are at the other parent's home why they can't still go to a b-day party of their friend's.

      
      
      
      

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  Mistee

  • 12 days ago

  
  

  Thank you, Sheri, Janine, and others for sharing. A productive, inclusive discussion on an enlightening topic must always begin with tolerance, civility and diverse opinions.
  When I read some comments on the thread attacking Janine, I couldn't help but wonder why the bitter divisiveness? Why can't we all respect each other's experiences and input, even if someone else's pain or perspective is different from our own? Must we all think alike to make a valid point on this post?
  Janine, contrary to what A Mom says, your comment was not "ill timed". The beauty of the web and social media, is that this forum is open to all whether you are a parent of a special needs child or not. Janine has as much of a right to comment on this thread as A Mom or ANY child of God.
  Sheri's post definitely struck a nerve. I am the mom of three beautiful, healthy, non-special needs girls. The doctor told me blood work for my first 2 pregnancies showed a risk of Downs Syndrome sending me into depression and days when all I'd do was cry. My third baby was unplanned during financially uncertain times so I suffered from ante partum and post partum depression and often considered that death would be preferable to life. Though the grief most parents on this thread with special needs children is different from my ante/post partum depression, my grief was very real. I think it's helpful to acknowledge that: we all hurt in different ways, one parent's grief is not superior to another's, and we all need strength and grace from God to meet the daily challenges of being somebody's mama.
  I empathize with all parents.
  Just as I respect Sheri's post, I respect Janine's comment. @'A Mama', Janine did not feel "the need to go to the trouble to say something condescending and not-helpful". In fact, she merely offered insight into her family's personal experience. That experience provides a different lense for looking at the isolation and grief that parents of special needs kids might feel. Most comments on the thread were tending towards "families with non special needs kids are bad or insensitive if their 'normal' child turns down a play date or steps away from my special needs kid due to the fact that my special needs child (may) display(s) violent behavior". I believe that's why Janine chimed in with a thoughtful look at the 'whole picture'. Sure, special needs parents know why their kids are excluded. The other side of that coin reveals that unpredictable, violent displays by special needs kids in the presence of non special needs kids are no less frightening although the violence is involuntary. Sensitivity has nothing to do with a child feeling frightened by a child acting out due to a disability. That's an important distinction she makes and her comments make the grief of special needs kids NO LESS VALID. Attacking and being critical of parents with different experiences is hurtful, mean-spirited and unnecessary! The focus should be the children-- bringing them together and protecting them at all times, where possible.
  My niece has autism and displays violent behavior. While I educate my girls about her condition and encourage them to engage her during visits despite my niece's preference to be alone, my job as a parent is to protect my kids first when my niece displays involuntary violent behavior. I am not capable of managing my niece who is almost as big and strong as I am; her mom and siblings are familiar with her most and know how to help. I believe we are all doing the best we can to protect our kids. If one's child is near a child who is exhibiting violent behavior, it is not reasonable to expect that parents would tell or expect their kids to stay put when in a potentially harmful situation. There is nothing insensitive about this mindset.
  It's not fair or right to VICTIMIZE parents who raise their children to remove themselves from violent situations. Doing so is divisive and could unintentionally cause parents of regular children to opt to avoid events where aggressive displays may occur altogether so please keep this in mind when regular kids step away from an involuntarily overstimulated child who kicks, hits or bites. It seems parents at risk of being victimized or deemed insensitive for protecting their in a social setting from violent special needs kids are darned if we do (tell our kids to step away for safety's sake during a violent episode), darned if we don't (attend a function for a special needs kid known to display violent behavior). We all have stress in our lives and no one wants more. I'm not being condescending, here, just suggesting a perspective that involves all parents' concerns rather than automatically writing off anyone who rejects an invite from a special needs child as "insensitive, etc.".
  When Janine asks what the difference is between her daughter being turned down for a party/play date vs this other child, she is relating to special needs parents' plight by pointing out that isolation is isolation. My daughter wanted a play date at our house with a kid from her private, Christian school who lived 25 minutes away and I remember thinking it was because we lived on "the wrong side of town". Then I realized we'd have to go to their house if we wanted play dates or meet up near their place and set up play dates with class mates who live closer or didn't mind driving to us-- in other words, find alternatives. Our family was a lot happier with this approach.
  So back to dealing with the grief and find solutions... Aside from releasing on forums like this, a constructive start is to find a community of peers wherever that might be. Whether parents of special needs or non-special needs kids, we must all accept that community might not look like what we had hoped, understand the perspectives of other parents, and then be grateful for the community/family that we are able to create. We can't force people to be our friends, nor can we force kids to be our kids' friends. We can only invite them to our events and let God do the rest. May God bless us all!

  
  
  
  

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    Sheri Dacon Mod Mistee

    • 12 days ago

    
    

    Mistee,
    Thank you so much for your thoughtful reply. I agree that this is an ideal place to have open and honest discussions about issues that are not easily resolved. You are right that all of us face isolation and grief and that this is part of the human experience. My desire for this blog is never for it to be divisive but to be inclusive always!
    You bring up a very valid point about protecting children from violent behavior and I couldn't agree more! We struggled A LOT with aggression in my autistic son when he was younger, and as a result we had to remove him from many situations where it just wasn't safe. I don't think any special needs parents would actually condone violence or have the expectation that others need to just "put up with it" because of the disability. Our policy with our son is that "Asperger's is no excuse," and this is true. He is ALWAYS disciplined appropriately whenever aggression is displayed. Also, I want to point out that the parents are the ones who recognize aggressive behavior the most, as we are usually the ones taking the brunt of it. When my child was at his most aggressive, I was the one he took it out on most. We did everything we knew to do, including an intense psychiatric day treatment program as well as the introduction of anti-psychotic drugs, but none of these were easy steps to take. It is an extremely scary place to be when you have a child who displays violent behavior, and parents who deal with this are well aware of that. So, I don't think it is anyone's intention to victimize those who choose to protect their children from said violence -- we ALL want to protect our children, as we should.
    That being said, I DO think it is important to educate and inform people in our society (including our children) about disability, social differences, etc. and develop a more compassionate and loving stance toward those who are different than we are. In the instances where we need to keep our children away, it's important for them to know why -- to know why certain children act differently, or talk differently -- and above all, I think it is crucial to teach our children that compassion and kindness are never out of place.
    My original post was more of a plea for kindness and understanding than anything else. Because so many of us with children who have behavioral problems associated with disability face unfair judgment and stigmatization, I feel the need to let others know just how that feels. So many people don't realize that there is a disability behind the odd or yes, even aggressive, behaviors and their reaction is to simply judge the parents.
    I am the first to admit that I was guilty of this for a long time. I was a perfect mother before I had children, LOL! I taught school for nine years before having a baby, and I thought I had it all figured out -- that those kids who couldn't behave obviously just had bad parents. Well -- I was wrong. Dead wrong.
    Certainly, a lot of behaviors out there are due to nurture, but so many are also due to nature -- and they get so mixed up that it's often hard to know which is which. Even my three "typical" children have behaviors that I think are directly associated with their personality types, not just with my parenting mistakes (although they have plenty of those as well!)
    And I can't emphasize enough that one of the best ways to reach out to a CHILD with special needs is to love his parents -- which is the purpose of my post. The parents are more aware of the big picture than the child is, and that is why our pain can be so devastating. We need to know that people love us and can show kindness and compassion toward us as we struggle through life, just as much as anyone else -- even though our struggle may just look like bad parenting to some. That's why this kind of open dialogue is so important.
    Thank you, again, Mistee, for your comment, and I ALWAYS welcome civil and honest discussion! God bless you as well!

    
    
    
    

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    Lori Jones Mistee

    • 9 days ago

    
    

    Thank you so much for your respectful and well articulated comments. This is my first time reading this page and I was very moved by the post because I share many of the same feelings. I think the reason why we feel them so profoundly is because we are confronted by "the bigger picture" all the time and we feel that It's nearly always our child who gets the raw deal. We are torn between our understanding if the needs of others and our love for our child sometimes multiple times a day. Please forgive us if we get a little sensitive at times.
    I have been particularily touched by the people in my life who have looked at us and our struggles and unflinchingly acknowledged them much like you have but then had the courage to say, "How can we do this?" Who don't just leave it to God but ask what they can do.
    My own parents came to me and said, "We love A-- and want to include him and don't want him to feel left out but we aren't comfortable handling him sometimes....What can we do for him?" How can me make this work?"
    A church volunteer came to me and said, "Tell me about your son. We understand he has some unique needs. What do you need from us?"
    As a special needs parent I wish more people would look me in the eye and acknowledge the difficulty I already know too well but also have an open mind and a willingness to work on a mutually satisfying relationship. All we want sometimes is a chance, a possibility, a little hope.We are some of the last people who would want anyone uncomfortable. I don't know if its misplaced politeness or what but what we usually get people avoiding us which can be very hurtful and lonely.
    
    

    
    
    
    

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      Sheri Dacon Mod Lori Jones

      • 9 days ago

      
      

      Lori, yes, yes, yes! We as special needs parents are more aware of the problems and difficulty than anyone, because we do deal with it daily. . . but we just want to be acknowledged and for people to show they care. This statement "I don't know if its misplaced politeness or what but what we usually get people avoiding us which can be very hurtful and lonely" hits the nail on the head. Thank you for posting.

      
      
      
      

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  Kristi - Finding Ninee

  • 16 days ago

  
  

  I really feel you about the guilt. It's so hard for me to not feel like I did something, should have known sooner...something. It really is so important for us to see the magic in our children...

  
  
  
  

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    Sheri Dacon Mod Kristi - Finding Ninee

    • 12 days ago

    
    

    Guilt. . . it's a constant struggle. Thank you Kristi, for your honesty.

    
    
    
    

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  Cindy Berenter

  • 8 days ago

  
  

  Beautifully written and I think it speaks to many, many people.
  My daughter is 15 now and was diagnosed with Autism at 2 1/2. We had an inkling (thanks to much research) prior to that, but it was still a grieving process; mourning the loss of a child we thought we had.
  I remember distinctly (as if if were yesterday-it remains that clear in my mind owing to my mixed emotions of guilt and pride) when she was about 3 and I had my then 2-year old sleeping in my arms. I was walking with my daughter into a store that had only a few customers. My Autistic daughter said something that sounded a lot like, "I see you, Mom." I am CERTAIN this is not what she said, but it was close enough to pass for this. I immediately said, "I see you too, Allie!" and proceeded to desperately seek out any other adult who noticed that MY kid did something normal. MY kid. No one saw it and I was disappointed and riddled with guilt that I wanted this.
  Moments like this come less frequently now as we have long since moved into the acceptance stage. But your message eloquently captures the isolation, guilt, shame, fear and exhaustion that millions of Special Needs parents experience.
  Thank you for sharing your story; sometimes the road is paved with many potholes (so many more and unique ones that the parents of "typical" kids have) and it does provide a certain sense of comfort to know that we are not alone.
  Keep on keeping on!
  Cindy

  
  
  
  

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    Sheri Dacon Mod Cindy Berenter

    • 7 days ago

    
    

    Yes, Cindy -- "mourning the loss of the child we thought we had" -- that's it exactly. It is so encouraging to be reminded that grief is a process and that as we move into that acceptance stage, things will be a little less bumpy. I LOVE the story of your daughter telling you she saw you. How beautiful and what a sweet, precious memory for you to hold onto. Thank you for your encouragement and for reading!

    
    
    
    

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  Crystal Robin Cook

  • 16 days ago

  
  

  Thank you. This is exactly how it is and what we have run into. Our son has autism. My husband has autism. My son has HFA and my husband is an Aspie. It's so hard for him to work even, because people sometimes treat him so badly. And it makes it worse to look at our son, and know he may face that as an adult. Or to have people pull their kids away and order us to go away because of ignorance. The things people say...
  Thank you so very much. I wouldn't trade either of them for anything. They are more real than many of the people I see every day.

  
  
  
  

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    Sheri Dacon Mod Crystal Robin Cook

    • 12 days ago

    
    

    Thank you, Crystal! I agree that there is something so refreshing about HFA/Asperger's and this is one of my favorite things about my son--that he is who he is and doesn't pretend to be anyone else! I think the hardest thing about high-functioning people on the spectrum is that they look "normal" and so their behaviors are judged even more because the disability is invisible. Please know you are not alone!

    
    
    
    

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  Keith Bachand

  • 16 days ago

  
  

  I have a daughter with special needs and honestly and sadly the unique grief you express is with myself and my wife as well. She can't walk because she had a brain bleed at birth which in turn caused high muscle tone in her legs. I know its no where near as bad as some are and we're thankful for that but because of her condition I'm starting to notice other characteristics as well. She has crazy fits where she just doesn't calm down no matter what. If this happens in public we get some pretty crazy stares. She has a twin brother and they will be 4 years old in January 2014. She also seems to act much younger than her brother and other kids her age. Shes very smart but at times I wonder because she acts as she's still a baby. I've read and our doctor has told us its common in special needs kids. I'm just worried that in school she will be the one left out, not invited to parties, and get left behind. Its definitely a different kind of grief.

  
  
  
  

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    Sheri Dacon Mod Keith Bachand

    • 12 days ago

    
    

    Keith, my heart goes out to you and your wife! Hopefully it will encourage you some to know that my son with Asperger's is also a twin. My husband and I credit many of the positive behaviors that he has learned to the fact that he does have a twin sister, a "typical" example to follow who has been by his side since birth. We believe this is just one of the reasons God chose to bless us with twins. Prayers and love to you in your special needs journey!

    
    
    
    

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  MyLoveforWords

  • 4 days ago

  
  

  From one mom of a special needs child to another, thank you. It's comforting to know I'm not alone.

  
  
  
  

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  Jo Nathalie

  • 17 days ago

  
  

  My two daughters with multiple disabilities are in their mid-20's now, but the pain doesn't go away. It changes -- it comes in waves -- but it never ends. I have so much I want to say to you, but for now I just want you to know that YOU ARE NOT ALONE. And please know that you are doing an amazing job, and that you are an AWESOME mom. Please try to find some time to take care of you -- as impossible as that sounds. I used to make jokes about how it would never happen, and then I found myself very ill and in the hospital, and I had no choice. Taking care of YOU is one of the best things that you can do for your child. Keep writing. You have much to offer other parents that are on similar paths. Be gentle with yourself... Keep reaching out. And don't ever believe that you are alone.

  
  
  
  

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    Sheri Dacon Mod Jo Nathalie

    • 17 days ago

    
    

    Thank you so much, Jo! I think you hit the nail on the head with the idea of pain coming in waves. I've already experienced that just in the five years we've been on this journey. Thanks, too, for the reminder that I (and all of us special needs moms) need to take care of ourselves. I couldn't agree more. I've struggled with debilitating anxiety for several years now because I wasn't being gentle with myself. . . it's still a daily struggle. So thank you from the bottom of my heart.

    
    
    
    

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  Holly

  • 17 days ago

  
  

  Thank you for sharing. My son has CP and is 13 and I have had a few of those bawling my eyes out the older he gets.. I understand the grieving everyday for the loss of the life I so desperately would want for him.

  
  
  
  

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    Sheri Dacon Mod Holly

    • 17 days ago

    
    

    Holly, you are so welcome. My heart and prayers go out to you tonight. It's so hard to be a special needs momma isn't it? Love and hugs to you!

    
    
    
    

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  Keith Dow

  • 22 days ago

  
  

  Sheri, I really appreciate the honesty of this post. Loss and grief go hand-in-hand and especially when you feel a loss for someone you care about so deeply the grief is unavoidable. I came here from your comment on Emily Wierenga's blog, and am wondering if you have written posts specifically on your experience with the church community? If so, could you point me to one? I really do appreciate your honesty and am always looking to grow my understanding of what families with children with special needs experience as part of church community. Thanks!

  
  
  
  

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    Sheri Dacon Mod Keith Dow

    • 21 days ago

    
    

    Keith,
    Here are some links to a few previous posts about our experience with special needs in the church:
    http://sheridacon.com/2013/08/...
    http://sheridacon.com/2013/09/...
    http://sheridacon.com/2013/11/...
    I hope the links work. If not, look on the blog under the special needs category & you'll find all of these there! I write a lot about this topic because its what we are living through right now! There is so much potential for ministry in the area of special needs & it always encourages me when leaders take an interest in learning more. So thank you!

    
    
    
    

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  JanineFFogal

  • 17 days ago

  
  

  While it is usually not a kid with a disability's fault he is excluded from fun, family or outside-of-school activities, there is the odd time when said kid's (likely involuntary) actions are a contributing factor. K is a little boy with autism and Tourette's who has been my daughter's classmate since kindergarten and without a doubt tries very, very hard to play with the kids in his class... but has also spent years and years yelling "vileword, swearword, J is so fat!!" at my kid (an average of 19 times per day, it's an involuntary vocal tic, I am told; his para thoughtfully keeps track) and any number of her classmates for years. YEARS. My kid copes displays more grace towards K than I'd be capable of but flat-out refuses to spend a single second outside of school with him and I cannot blame her. We live in a very small town, there is exactly ONE school and ONE third-grade class. K doesn't get many birthday party invites (which is very, very sad, but, well, 5 days a week of insulting my kid is all my kid can take).
  I require my child to be polite to K, as civility is pretty much what keeps the world from descending into anarchy but I cannot make her like him. (One of the more heartbreaking calls I ever received was several years back from K's mom, inquiring why J was nice to him at school but declined all playdates). At work, I would not put up with anybody treating me the way K treats my girl... but my kid has no choice but to suck it up.
  While this will not be a popular opinion, it is worth looking at whether those who are excluding the kid that you clearly love and adore for a valid or at least somewhat understandable reason.

  
  
  
  

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    Sheri Dacon Mod JanineFFogal

    • 16 days ago

    
    

    Janine,
    Thank you for sharing your perspective. It is a difficult situation, obviously, when the behaviors caused by disability are extremely disruptive. It sounds to me like there is a big communication gap between teachers, parents and students that is causing more pain than is necessary. If the child's actions truly are involuntary (as they are with Tourrette's) then the other children really need to be taught that these are symptoms of a disability. It is good that you teach your child to be polite to the other child, but in my opinion, children need to be taught compassion and sensitivity even more. Seems like the school system is missing out on that opportunity as well as on the opportunity for redirecting undesirable behavior. Not sure what the school district is like in your area, but it sounds like sending her autistic/Tourrette's son to the ONE school is the only choice this mother has. And by federal law, the public school system may not exclude a child due to disability.
    While I do think your opinion is valid, and I understand that you are coming at it from a protective stance for your daughter's sake, I would urge you to consider that this is exactly how special needs parents are approaching life every day. Our kids are constantly under attack, as are we as their parents, by judgmental stares, comments, exclusion, and just plain meanness.
    As I read your post, my heart was breaking for the mom of this special needs child. I cannot imagine the tremendous courage it took for her to call you and ask why you declined her invitations. I am very curious as to how you responded.
    You are right that you cannot make your daughter like this child, but you as an adult have the ability and tremendous opportunity to show compassion and love and kindness to the mother of this child. That would be such a huge step. You say that your daughter displays more grace toward the child than you would be capable of -- which shows she has a tender, teachable heart. I cannot understand why that would not be the priority here--to nurture that innate compassion instead of squelching it.
    I have four children and only one has special needs. We have tried our best to raise our children to be polite, yes, but we have emphasized kindness and compassion EVEN toward people they don't necessarily like. Yes, I have even made my children invite certain "undesirable" kids to their birthday parties. As a result, I see my three non-special needs children reaching out to and even befriending the "weird" kids in their schools, and I know it's because of the compassion they've learned in dealing with their own brother, and experiencing the heartache that comes with having a loved one repeatedly rejected. I think you are missing out on that opportunity with your daughter, and that is very unfortunate. You say that you would not allow anyone at work to treat you the way this child treats your daughter, and I agree -- but you would be dealing with another adult at work. This is a young child of 8 or 9 years old, who has a disability DEFINED by involuntary actions which are clearly causing him to be shunned not only by the children, but by the grownups as well. Very sad.

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      JanineFFogal Sheri Dacon

      • 16 days ago

      
      

      Shari,
      Thank you for your thoughtful reply.
      When K's mom called me, I gave her an honest answer -- that my daughter did not like being constantly, albeit involuntarily, called names by her son and for that reason did not want to spend time with him outside of school. She was seven at the time and entitled to politely decline a playdate.
      My daughter hates being insulted and called fat. Absolutely hates it but is now used to it. *Sigh* It's been 4+ years and is likely to continue until they start high school. She is required to be (and is) polite to him. She's nine and doing her very, very best. What more can I ask?
      K's mom gives a presentation on her son's special needs at the beginning of each school year (and returns at the request of the teacher, guidance counselor or para). The school has an anti-bullying policy that seems to be enforced (and the teacher explains why K's special needs seemingly exempt him from part of it), extends to birthday parties and that I've always abided by, i.e. invite all the kids, all the boys OR all the girls, or no more than 3 kids in a class of 22ish. K's mom, K and the school are doing their very, very best too.
      I do my best to teach my daughter (and son) kindness and to demonstrate kindness and compassion. My kids are very comfortable around folks with disabilities, including their dad (my husband is sees a tiny bit but is classified as legally blind), have friends who come over for playdates who have disabilities and are generally pretty accepting. I too am doing my best.
      And I do see your point about the importance of reaching out to another kid, because it's the right thing to do. I might just invite K the next time I have a bigger gathering for the kiddos at home.
      (The dilemma I come up against is that J and my son too, on occasion, has declined a playdate with a non-disabled kid that she said she didn't like, e.g. Bob only wants to play Ewoks and she's over them. Occasionally a non-disabled kid declines a playdate with one of my kids and, well, that's fine. I have no issue with the fact that J does not want to play with Bob, or that Suzy doesn't like my son and declines playdates with him on that basis. And if it's okay to turn down an invite from a kid you don't like, why wouldn't it be okay to decline a playdate from a kid you don't like who happens to have a disability?).
      @Leslie schmidt - I absolutely do not let my daughter be mean to ANY kid; she's required to be (and ABSOLUTELY is) polite to him. Being civil to a not-favorite classmate isn't quite the same thing as treating said classmate poorly.
      @ A Mom: The other kid's mom asked why my kid declined a playdate and I told her the truth, as politely as I could. The alternative was lying ("J's busy every single time you suggest and will not be available until the 12th of never"). If the situation were reversed, I'd hope the other mom told me the truth. I don't quite get how (or why) this means I have no social skills.

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        A Mom JanineFFogal

        • 15 days ago

        
        

        Janine-You've missed my point. I am taking about Sheri. She wrote this gut-wrenching post and poured her heart out and yet you felt the need to go to the trouble to say something condescending and not-helpful. I can't get through this post without crying.
        Trust me, we get it. Kids don't want to play with our children because they are quirky or delayed or inappropriate behaviors. In fact, parents like us probably have a binder full of goals and objectives and behavior plans, spent thousands on therapies, researched hours upon hours and probably cry at night about these very behaviors. No, this isn't some earth shattering news you shared. Maybe you felt you were enlightening everyone. Or maybe you were seeking more information. I am not sure. But it seems ill-timed. Sometimes we parents just want to seek solace with one another. Sometimes we just want a little understanding. Instead of acknowledging, you just put more salt in a wound on a post where a mom beautifully articulated her anguish. Yes, there is a time for dialogue and education, but this wasn't the forum, IMO. This is why you received the reaction you did. Sometimes educating others and taking about this is exhausting and frustrating. Kinda like hitting your head on a brick wall.
        I commend you for raising a polite and thoughtful child. But for those of us with imperfect children, it is reassuring to know there are others like us who HURT and know there are people who acknowledge these feelings and grief.
        My guess is his parents hurt a lot too. It's your prerogative to decline the invites. This mom sounds phenomenal and is trying her best to help her kid. My guess she is probably very isolated and alone.
        Sometimes we just have to go through life with the adage "Don't be an a**hat". (Sorry if this offends, Sheri).
        Perhaps my responses to you come off crass. I should apologize but I would be remiss if I didn't share my perspective as a special needs mom of two beautiful, smart, and caring little girls.
        Have a Merry Christmas.
        PS-it's a REAL DISABILITY. It's not bullying, although it seems like you don't fully believe that it is.....
        Autism rates are now 1 in 50 kids. Be thankful it's not your child. With these rates, it's only time before it affects your family whether it be a niece, nephew, dear friend... We will be only seeing more and more kids with this disability in the classrooms so I think it's good that children are understanding differences at an early age. This isn't the days of Title 1 where the kids are sequestered to a special Ed room and not seen or heard. This is the age of inclusion. Plus many of these kids likely have an IQ higher than most of us adults. Many are geniuses. It's just that others judge them based on behaviors, language processing....you know, "differences". ;)

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    A Mom JanineFFogal

    • 17 days ago

    
    

    Wow. Lucky for you it's not the other way around. Pretty harsh. Nothing like beating a person while they are down and pouring their heart out. Trust me, as parents we are very much aware how our child(ren)'s behaviours affect their social life. Nothing new. But thanks for calling attention to it. *sarcasm* Perhaps you could use some social skills training yourself?

    
    
    
    

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    Holly Peterson JanineFFogal

    • 8 days ago

    
    

    Can you imagine what it would be like to say what you don't want to say? What if every time you saw this boy with Tourette's your mind made you say, "Get out of here, ret*&d! I'd like to knife you!" or something absolutely horrific? That's what Tourette's is like. My mom has it. I grew up with it. It made me more empathetic and kind. He CAN'T help it. It's not his fault.
    http://www.youtube.com/watch?v... Please watch this entire video. You really, really, really need to watch this and learn.