Feel Free to Copy and Pass Along for an Autistic Individual During the Holidays

This was written for the purpose of it being sent to relatives, friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest on the autism spectrum. This letter is written as if the individual on the autism spectrum is writing it personally.


Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and
understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things—just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves
feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for a while, as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person—an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!

*Author, Viki Gayhardt

A Very Mellow Weekend

We had such a wonderful weekend. It was so mellow and quiet. Griffin spent most of his time making things out of legos, such as pictured here: the Simpsons. I think that he did a great job! I got lots of school work done, started my final exam for my history class. It will take a few days to complete but I think that if I am careful enough I can make a really good grade.

I was formaly invited to join the honour society of the university that I attend (online) because I have made straight A's so far and hope to continue along that path. I am certainly putting lots of hard work into my classes so I have my fingers crossed.

I must add that I am grateful for our health because just about everybody that I know is sick. I am very strict about both of us washing our hands as soon as we get into the apartment, I think that it helps prevent a lot of sickness. Griffin is pretty much over putting his fingers in his nose or in his mouth so that helps too. Since he was born, there are only a handful of times that he has actually gotten sick and each time did not last very long. And he has never taken antibiotics either, simply because he would always vomit as soon as he felt them in his mouth....and yes, even the liquid kind. So we have always been blessed with good health and boy does that make life a lot easier.

We have finally gotten an amazing case manager who is getting things done and is on the war path to get the darn IEP meeting that I have practically been begging for since the first day of school......uhm, since August!!!!! I have spoken to everyone that I need to but they keep coming up with excuses and blowing me off each time I bring it up. Tracie is our champion and she is definitely going to come through for us!

I am still searching for a psychiatrist who accepts medicare and/or medicaid but have had no luck in this area. So, I am looking further away into the next town....there's bound to be at least one somewhere. I've got to find one soon because I need help managing my meds and besides, I am about to run out of some of them. I do have a great therapist but the clinicians that they have there I am not happy with. For the most part I have been pretty stable but I have had to take an anxiety pill a few times to help me out.

Please pray for my dearest friend, Tina who has been very ill. We have known her and her family for a very long time and expect that she/they will be with us for many years to come. But please take time to think of them and send positive thoughts their way. Our lives are so much richer having them in it and I am very grateful for all these years that we have known one another.

A Stressful Day

Here Griffin is in the pool at the YMCA and notice that it shows "5 feet". No one bothered to ask me or to inform the volunteers that Griffin couldn't swim and where the hell did they put him? They expected him to hold on to the side of the pool the entire time and the the idiot of a volunteer was taking the kids from the edge to swim on their own back to the edge. Damn good thing I went there because I had to scream at the guy, over the voices of 60 children, to NOT do that with him because he cannot swim!!!!! This is some guy who was stuck there with about 15 children and thank goodness the male lifeguard was right there too because sure enough Griffin let go of the edge of the pool and almost drowned!!!!!!!!!!!!!!!! Words cannot even begin to describe the panic and fear that I felt in a split second. The lifeguard reached over and got him out of the pool and I promptly took him away from the pool for the rest of the time. Griffin wasn't scared but I was scared enough by myself. Needless to say, I was very angry and swore that he would not participate for the rest of the week.

I spoke to the woman who was in charge of the program and let her know that I thought that the whole thing was a bad idea because there were not near enough volunteers there and that they had no right to put my child in the deep water without even knowing if he could swim or not. They just assumed that all the kids could save their own lives I guess. Griffin was not the only one to nearly drown, a little girl who went unnoticed a lot longer was truly scared to death and they kept trying to get her back into the pool after that.......such idiots!!!!!!!!!!!!!!!!!!

Griffin had such a great time I hate for him to not go back because he just wouldn't understand why he couldn't. So I insisted that he have a life vest tomorrow or he will not participate. I took him to the doctor this evening because I wanted to be sure that he didn't aspirate any water. He is okay. While we were there he got his flu shot and his H1N1 vaccine.

I can't really go all week because I am a full-time student and need that time for my work but be sure that I will be there tomorrow to make sure that they follow through. If I am not satisfied then he unfortunately will not go back and I will just have to find a way to help him understand. I want him to be able to participate with his class/friends for socialization but this was just too much.

Got to go to bed.

Once in awhile I have this tsunami-sized wave of loneliness hit me and last night was a doozy. I was missing my ex-husband with whom I had been with for 10 years, found out that he had been cheating on me for years and it devastated me for a very long time. But of course when I feel lonely I forget about all that pain and only remember all the good times that we had. I do wish that I knew how he was and communicate with him once in awhile but he is in Greece and has been since right after Griffin was born.

I miss my dear friend Glenn who is in Alaska with whom I would hang out with every weekend watching movies, talking, and eating pizza with pepperoni and jalepenos. We had such a great time together but I had to leave to go to the lower 48....so here I am. Tried dating but it is just a pain in the butt, trying to get to know someone is not something I find entertaining.

I feel better today, the daytime is good that is unless I hear a song on the radio that makes me tear up and feel blue again. Nighttime is the hardest part especially since my friends here do not answer their phones or return my calls. Guess they do have a life of their own. I'll be okay.

Griffin is doing so well! He has been so happy and mellow lately....we have had such a good time laughing, playing, dancing, and singing (he doesn't like my singing, don't blame him). He has been doing his homework with such ease and he sits there as long as it takes to get it done because he does not want to get a zero. I am so proud of him, he is such a big boy!

The weather is awesome today and the weekend is going to be in the 70's, hope we can get outside and do something. Griffin doesn't really like to do things outside....that is unless the computer was out there LOL.

I am a bit disappointed with the school because they still have not organized an IEP yet, guess they'll get it by the end of school. Don't know exactly what goals they have for him if they do not have one to go by. The one from his previous school is lame. It shows that he needs to have special help with reading when he is the top speller in his class and is reading at least 2 grades higher than his peers. At least he does have a very nice teacher, I do like her a lot.

Griffin is going swimming all next week for 2 hours a day at the YMCA which should be fun. I am definitely going to watch to make sure that he is okay because he really needs one on one supervision and they will not be providing that. Besides I want to see him have lots of fun.

My OH My How He Has Grown!

Here is a picture of Griffin and his service dog Abby, who has been with us for over 4 years...maybe it has actually been more like 5 years. The time goes by so fast and Griffin is progressing in leaps and bounds. He has been doing so much better since I requested the increase of Abilify up to 10 mg., not so moody and much more stable emotionally and mentally he is able to focus and attend to his tasks.

Still no I.E.P meeting and that bugs me, I have practically been begging for one since the first day of school! All of the staff and his teacher are all wonderful and seem to have his best interest in mind but I am concerned that since he does have autism and that they are not so familiar with it is why it is taking so long for them to get all his testing done and to have a meeting for goal setting. One thing is for sure is that since living in Anchorage, Alaska, this has been the best school so far. Nothing will ever compare to Kathleen and all that she had done for Griffin and for me too for that matter. I still miss her terribly and wish that we could have her here with us.

I weaned myself off of the Lamictal and the Effexor that had been prescribed when I was in the hospital because they made me feel so manic and my head felt as though I was always just getting off of an elevator or just got off of a boat. I am still searching for a psychiatrist who knows what the heck is the right thing to do for me and to know which meds are going to be most effective. I am still having to take 2 Attivan to help me sleep on top of the Rozerum which used to work on its own but not anymore. I wake up in the middle of the night bumping into walls with my forehead and when I get up in the morning I feel like I am drunk, slurring my speech and can barely hold my eyes open. Once I take my morning meds. which includes Provigil, I am just fine for the rest of the day.

Went to a pulmonary doc who wants me to do another sleep study and to cut back on my Provigil and Attivan. I do agree that I am probably over-medicated but I need something that works put it their place. If by chance in the middle of the night I take my CPAP mask off then I don't get adequate sleep and feel horrible in the morning, as if I had not gotten any sleep at all. I do not know why I take it off other than I feel like I am suffocating, this is why we need a new sleep study to see if there is enough pressure or too much for that matter.

Griffin spent the night over at my sister's and her family. Griffin and his cousin had a great time together and didn't even squabble the whole time! Which is rare. My sister said that he was very well behaved and was a great little guy the whole time. I think that it is good for both of us to be apart sometimes in order to fully appreciate one another and to "miss" each other so that we are less likely to take our time together for granted. I think that may be the case for any two people who spend all of their time together. It is a healthy thing to do.

Well, I have a research paper due and I have been putting it off for some reason, I love working on it but cannot seem to motivate myself to finish it, which is highly unusual for me. I must add that I have had a plethora of appointments since the assignment and I have not had a very big window of time to spend on it, only bits of time here and there which I find very frustrating. Just as I get my creative juices flowing I am interrupted and have to stop.

The weather is gorgeous and I adore the autumn, my favorite time of year. The air is so crisp and clean, the temperature is perfect, especially if it is sunny and with perhaps a little breeze. I love getting out my sweaters and putting on my boots. If only it could stay this way for a few more months it would be so great!

Prayers and Positive Vibes for My Brother

My brother almost left this earth 3 times on Tuesday evening as his heart stopped and he had to be resuscitated. I went to see him in the hospital today and he is not in the clear yet although some of the major concerns such as his liver enzymes and a very low blood pressure have improved. There is a concern that he is going into a very deep sleep and it is very difficult to wake him. The nurse was concerned but of course had no answers.

It breaks my heart that my dear brother is lying so helplessly in that hospital bed. He has been having seizures for quite some time now and nobody has any clue as to why. I want to go to see him everyday but I don't know how his wife and the medical staff feel about that. I don't want to be a bother but I love him dearly and want him to know that I care enough to come to visit him and to see his wife, have a short conversation with her and to let her know that she is thought of as well.

That is all for tonight. Not feeling very cheerful but in a few days I will post again and let you know how he is and how we are doing otherwise.

What Does a Mother Do with ALL These Fears?

When I can't sleep at night, I lie awake thinking of all the things that scare me so much and what I could possibly do to avoid them or to remedy them should anything ever occur. The one that bothers me the most is that something happens to me in some manner and I am not able to care or look out for Griffin; for example, if I fell and got knocked out for a long period of time or if my meds caused me to not wake up or something. Who would know? How would Griffin understand that something is wrong with mommy? There is nobody nearby who checks on us daily or even weekly for that matter and if I should happen to not answer a call or two they would be none the wiser.

All I can think of is my precious child trying to find ways to feed himself and how he would be without his medication and probably would be running around here manic as hell and feeling quite helpless and perhaps even scared. I ponder the thought of teaching him to use 911 but would he understand when it is truly appropriate? I am going to teach him to use the directory on the land line and to call my sister or his godmother if mommy doesn't wake up. I can only hope that this would work and that he would know when to call and how to get their attention that something is wrong.

How does one overcome these fears and sleep at night, especially when we are all alone and the neighbors don't even pay attention to whether we leave the apartment or even whether Griffin gets on the bus for a day or more. For sure they wouldn't come knocking at my door. The manager has an older autistic son and I am going to ask her what she might suggest since she does live upstairs from us but she cannot be "friends" with us due to her obligations as a manager.

I am desperate for answers and welcome any and all input on the matters above. I just wish that there was someone to rely on to help us who was nearby. Guess that I should try to get to sleep, I look forward to hearing from my fellow bloggers and friends. PLEASE HELP!!!!

No More Snuggles

Griffin is really growing up and one of the biggest indicators is that he no longer wants to snuggle. It is bittersweet indeed, I am glad that he is becoming so independent but at the same time he is just doing it so fast and it kinda brings tears to my eyes.

We increased the Abilify to 10 mg. and it seems to be helping a lot=fewer meltdowns. Today I sent him to school without the Focalin XR so we shall see how that works, it would be great if I could take him off of it.

On the weekends he is on the computer most of the time searching for videos of funny commercials such as Geico, M&Ms, Aflac, and his favorite shows like Sesame Street, Teletubbies, and Wishbone. I am always in the same room with him just in case he stumbles across one accidentally that is a homemade video which may have a bad word in it. He is quick to change it as soon as he hears it or I let him know that it is not okay. He sure does get a lot of joy out of watching them and dancing around when he hears songs. The only thing that is not really so great is that he now has ecolalia and can recite them verbatim...over and over again. Oh well, it could be worse.

School is going great and I am working on a research paper about Alexander the Great, the man he was and the relationships that he had. Mostly information about him that most people never hear or read about. I am loving it and think that it is wonderful to have the opportunity to research something that is so intriguing.

The weather is so perfect this time of year, my favorite season...especially here in the mountains. It is my first fall in many many years back here in my homeland and I am loving every moment. Griffin thinks that it is pretty neat too. Haven't even turned on the heat yet but soon.

Loves to Dance, Especially Disco

My handsome big boy has always loved to dance and the older he gets the more into it he is. I was recently told that there is a dance class for special needs kiddos nearby and I am going to hop on that one right away. I sure do wish that the video was longer so that you could get a big belly laugh and thoroughly enjoy how much he is enjoying it.

He loves disco so I am going to find a compilation cd that has old disco hits on it so he can dance his little heart out as much and as often as he likes. I think that it is a great release for him and helps him cope with stress. Not to mention, it is great exercise which he doesn't get enough of. Actually it may be even more enjoyable for me to get a DVD of those old hits so he can watch them dance and pick up some new moves just like he did with YMCA.

He usually doesn't like it when I dance with him so I just stand back and take videos and snap pics of him and he loves that.

His unacceptable behaviors have increased so I am going to talk to his doctor about increasing the Abilify as he is having more mood swings lately. Some days it is impossible to get him to do homework and I refuse to give him the Focalin just for that because then he has no appetite and will not eat dinner. Since he won't eat lunch at school, because of the Focalin XR, he has to get some food in him in the evening.

Life is tough some days but I still love it and refuse to complain about him. He is still the joy in my life and I love him beyond compare!

A New Perspective on Autism

Please go to the link above and check out this woman's perspective on autism. I think that it is beautiful, enlightening, and the truth for me and our situation. Griffin is truly the epitome of unconditional love, this is what he has taught me since the day he was born. It is a sad world that we live in that so many conditions are placed on one another when we say that we love one another.

By the way, Griffin is the TOP speller in his class and is reading at 4th grade level and perhaps even higher. He needs to be re-evaluated to see where he is academically. He loves riding the bus and he loves going to school. He often talks about his classmates and especially how much they love his show & tell each Tuesday.

Autism Research/Changing My Direction

I have happily decided to change my major to child and family development so that I can eventually get my master's in autism research. I am so thrilled with my decision and cannot wait to get my general education classes finished so that I can move on to my core requirements.

I know that there is now a new statistic that every one in 91, that's 1% of children are diagnosed with autism and I feel that it will continue to increase. Therefore, the need for more research will be necessary not only now but in the future. It will be an exciting field to be in and I want to be part of it.

I just read online/in the news that Obama approved 60 million dollars towards autism research which is very encouraging. There is so little known about it and in so many different aspects of it that it will be an ongoing effort in order to solve the puzzle and to get what these children (and adults) what they need the most. It is especially important that the adults get what they need because so many do not even have an advocate to help them along in life. It is a shame that they need to go to group homes or assisted living which, I believe, compromises their need to be more independent.

I shall get off my soapbox for now but I must make you aware that I will be writing more and more about this as time goes on.

Griffin's Godmother

Things are going just fine now that I do not have the sources of stress that I did have. I have caught a member of my family in two and most likely three lies and there will never be trust again. Then she tried to manipulate me into making her the sole guardian of Griffin after I had chosen someone else whom I trust implicitly and love dearly. But that's not going to happen, I am keeping the same person as Griffin's Godmother and nobody is going to change my mind....Period!

Griffin adores her and balls his eyes out when we have to leave her house, I love the interaction between them, the love is obviously mutual. I feel good about it and have no doubt in my mind that it is a sound choice. I don't care what anyone else thinks or feels about it and they can be as judgmental as they want to be but it makes no difference to me. When he is with her he just beams and runs around with glee.

If and when I leave this body then I will feel safe that my child is in the best hands that he possibly can be and that he will continue to have an advocate and a lot of love and patience in his life.

Stomach/Anxiety Problems

I have had stomach issues that have progressively gotten worse over time, to the point of vomiting pure acid. I had to sleep in a chair Saturday night so that I wouldn't get sick. I had so much anxiety that I couldn't sleep and had to take my prescribed dosage of 2 Attivan for sleep.

I have been stressed over my family and the fact that they have been talking behind my back and that I have been accused of doing things that I would never ever do, not in this lifetime! Ever since getting out of the hospital it has been nothing but one stressful situation after another with them. If not for that then I would be just fine and have nothing to worry about although I will be absolutely broke in the month of October. I usually don't stress over things like money and this is no exception because I know that it will all work out. However, when people talk about me especially when I am not around to defend myself and in the hospital, THAT bothers me!!!! And to add fuel to the fire, it was highly suggested that I not hang out with my friends, the ones who helped me when my family wouldn't, the ones who I grew up with right after I got out of the hospital. So there is the proof that things are being said about me and it was decided that I shouldn't have anything to do with this family of friends....of course that was "not" a source of stress either LOL!

I am not a child and Griffin and I are doing fine on our own, we did it for 5 years in Anchorage and we can do it again. At least up there I wasn't having stress related physical problems. I came here to have support but I will not accept help conditionally and be treated as though I have no wits about myself and cannot make sound decisions on my own.

I am just going to steer clear of everyone in my family and refuse any help in October, I will get by without them one way or the other. I may have to pawn something but I will get by. At least we do have food stamps (some but not a whole lot) and if I go to the discount grocery then I think that I can make our food stretch. The only catch is that Griffin will only eat certain foods and they do not always have those foods. I'll figure it out.

I was supposed to have an endoscopy today but didn't have a ride home and I sure do need to have it done. Something is terribly wrong and it is just getting worse. My Attivan only works when I take 2 at night, during the day when I only take one it doesn't give me any relief and tends to hurt my stomach.

Griffin's School Performance

This is Griffin with his familiar smiley face as he sits and waits for his school musical performance. I wanted to put a video on here but it was too long to be uploaded. Griffin didn't sing but the whole time the other kids were singing he danced. The crowd loved it and especially at the end of each song they would clap and Griffin would take a bow. He is so darn adorable people just can't help but love him.

Griffin's teacher brags that she and the classmates just adore him, that he is quite popular. Tuesday I took "Chucky Sue" the Chinese Dwarf Hamster, to show & tell and Griffin answered questions as the children would raise their hands and he would choose who to call on. The interaction was incredible and it was the first time that I had seen him socialize in such a manner. He seemed quite proud of himself and the fact that his mom and his pet were there and that the kids were so thrilled to see the hamster.

I am so glad that we moved and that he is in such a wonderful school/classroom. He has progressed in leaps and bounds. I am also glad that I stopped home schooling him so that he could have the opportunity to socialize and be around his peers. I feel that for any child this is essential. Otherwise how could they know when they grow older what to do in social situations? It is especially crucial for autistic children to do this because they do and possibly will always be delayed socially.

Each night I give thanks and tears come to my eyes when I think how far he has come and how bittersweet that he is growing and developing so fast.....we have come a long way. I have a collage that I made of his younger years and look at it each day and can't help but to smile and remember how much joy he has brought to me and how much I have learned along the way...from him.

Please Pray for Our Friends

My dear friends at Autism Schmatism are having a tough time as they have had a death in the family. So please visit the blog and give your support and let them know that you care. We love them dearly, they are so beautiful and loving. Please pray for them.

Feeling Better about Life

I am over it now and life goes on. I have returned to being grateful for the friends that I do have and especially for my little, not so little, guy. Griffin helps me to live in the present and I love that,so things are going well and I am not going to complain....not for awhile at least LOL!

Mental Illness and the Lack of Concern

It always amazes me how people dismiss mental illness issues as opposed to physical injuries. I have had so little support and not even heard from those whom I thought were very dear friends to me. THAT HURTS LIKE HELL! Even my own mother didn't call to see how I was doing! Damn good thing that I am not suicidal because it would be a good time to check out.

As if it is not hard enough to get through all this and raise an autistic child then I don't even have the support that I need to feel like anybody gives a damn. I now have 2 people who are here that call to check on me and I truly appreciate that. Had to stop talking to my sister because all she would do is minimize my issues and trigger me to no end. I do have friends who call from afar and e-mail me to see how things are going and to show their concern.

It sucks to have a mental illness and how people treat me as if I had some kind of disease that they would die from if they contacted me. Thanks a lot people! Having horrible attacks of anxiety every day that are debilitating isn't enough, it is HELL to feel like I am hardly cared for and loved. My anxiety meds don't work for me and I am on the max dose. So now my PTSD is full blown and I can't get it under control. Sure wish that I was not treated that way too bad I wasn't in a car accident, I would have had flowers and everything!!!!!!!!!!!!!!!!!!!!!!!!

I am a Blessed Individual, I am Grateful for All that I have

Griffin will be taking O.T., P.T., and Speech this year (privately). We are also working on getting him back into O.T. swimming because where he goes for therapy has a pool! Unfortunately, I am going to have to stop the horseback riding. It is just too far away and even though we got a scholarship the money is just not there, sad to say. Maybe next season we can start all over again.

Griffin is still doing great in school! The only obstacle that we have right now is that he won't eat. He refuses breakfast, then takes his Focalin XR then he won't eat his lunch either. For dinner he still does not have an appetite and only wants one carb, like fries, mac & cheese, or bread. I wish that I could afford to get him some vitamins. The challenge there is too that it is hard to find one that he will actually take. I have wasted so much money on trying out vitamins for him. The doctor suggested that he take the gummy kind so when I have some money, in about 2 months, I can get him some.

Finances are very very poor this month, I frankly do not know how we are going to make it through. I hope that we have enough food and gas. Since I have therapy now, about 4o miles away, and Griffin has therapy plus doctor's appointments each week I have to be super careful with how much I drive. I just give thanks each day for what we have and have faith and a positive attitude that the universe will work it all out for us. I hate it when people say "it could be worse" because that just minimizes what we are going through. I wish that they would just be positive and say something like, "you are a blessed person" thus reminding me that we do have a lot to be grateful for.

I have learned throughout the years of therapy that validation is so important for someone who is going through a crisis and for someone to minimize just adds salt to the wound. It is not the way to support someone and show them that you really care and that you are trying to understand what they are going through. For me, my crisis and challenges are real and just because there are people out there who have their own challenges doesn't make a difference to me because it is my life that I am living not theirs. Giving someone positive support is the way to go and I am not one to complain either so I consider myself to be a positive-forward thinking person. So just an FYI for those of you who might slip and say that to someone, try to think before you speak and show some LOVE!

What an Adventure Life is

Just got out of the hospital. Had a horrible manic attack and had to be taken by ambulance to the hospital where they admitted me. My pulse was 140 and they had to give me two Attivan to get it down.

No need for details, I have already e-mailed the people whom I wish to know about them. But I met some really cool girls on that floor, some whom I will always keep in touch with and will never forget.

They told me that the tough part is not going through the stay there but once I got home it would be worse and boy was that the truth. I had an anxiety attack my first night home and couldn't sleep for hours, woke at 4:00 then decided to take more meds to help me sleep just a little bit longer and well, it lasted way longer than that. I woke when Griffin did but couldn't stay awake all day. So, I am here to confess that I was "out of it" for a couple of hours while he was awake. I hate it but it is the truth.

I have an appt. to see a psychiatrist on Monday so that I can be sure that my meds are still working okay and that I will for sure get new prescriptions for next month. I am very relieved by that.

Had to drop my classes for this month because my books won't be here until tomorrow. That is a bummer because I was looking forward to having enough to keep me occupied while Griffin is in school. Not to worry though because I can start at the first of next month. In the meantime I will just start reading my text books.

Griffin did really well going from one house to the other while I was away, they all said that he had lots of fun. So that helps me to handle the fact that I missed him so badly. My sister even brought him in to visit me once and boy did that help me get through the rest of my stay there. Although I cried plenty, I got over it more quickly because I got to see his big smile and have lots of hugs.

Everything is Going Great !

Griffin had his first lesson on Friday and he did a great job listening and following directions. The instructor was simply awesome and made sure that the boys didn't get bored. They did exercises while on the horse and played games too. Griffin has no fear of being atop such a large animal, he seemed perfectly delighted.

School is going great as well. His teacher has sent home notes every day letting me know that he has had a wonderful day and that she is so happy to have him in her class. He is taking the Focalin XR 5mg each morning and it seems to be helping him out quite well. He loses his appetite during lunch but has breakfast and dinner so the doc said that it's no big deal.

We spent Saturday with Griffin's guardian, Stephanie, and had a great time. Griffin loves her so much and talks to her all the time that he is with her and on the phone as well. She has been such a wonderful support for us and so much fun to spend time with. We both love doing the same things and sit and talk for hours drinking lots of yummy coffee.

Can't wait for school to start! I miss Griffin while he is in school, I have stayed busy cleaning and made two collages; one of Griffin and one of my niece and nephew and now I read blogs and read my ancient history book. Hopefully I will begin school on the 7th...I am so excited to begin!

First Day of School

Griffin's new teacher wrote a note saying that he had a great day and she also called and left a message bragging about what a wonderful day he had. Needless to say I am thrilled and excited that perhaps this is going to be the right place for him to succeed.

I have spoken to everyone at the school who will have contact with him for therapy and special needs resource and they all seem to be happy that I am so pro-active and totally interested in what/how he does. I am just going to wait about 2 weeks to let things settle down and give them a chance to see how Griffin is doing then we can share information based on observations.

Every morning so far he has been up, eating, and ready to stand outside to wait for the bus, so that is a great sign. I was very productive yesterday, got the apartment totally cleaned and three loads of laundry done. Was still left with time on my hands and missing my little buddy, don't know what I will do today. I have started working on the book again, doing some writing so I will probably do that for the better part of the day. Can't wait until my classes start again so that I can put my brain to work again...nothing beats a good mental/intellectual challenge to fill the day.

I am Still a Straight A student!

I just made another A in my English Composition class therefore I now have 5 straight A's. I am so thrilled that I just had to share the news with everyone.

Next I will be taking English 101 Proficiency in Writing and History before 1650 and I am so excited. I just love learning and having the intellectual stimulation with lots of challenges.

Later I will be taking Ancient Greece, Forestry w/lab, and I want to add one more to make sure that I stay busy while Griffin is in school and to get that much closer to my degree.

Horseback Riding

Griffin had his evaluation yesterday at the therapeutic horseback riding farm. He laughed so hard he couldn't stop. You can see in this video how happy he is. They said that he did so well that after one more lesson he will be able to guide the horse himself without the front leader holding the reins. I am so very proud of him! He rode Tonnka, a wonderfully gentle horse who responded very well to Griffin's guidance. I am so excited to see him do it again and again, the next lesson is on the 28th.

North Carolina is SO Cool!!!!

Yes, it is so cool...in more ways than one. The weather is so much cooler than in SC, I hardly have to run the A/C ever. Most of the time the windows are open and there is lots of shade so that when the breeze blows it is nice and cool.

Griffin seems to be well adjusted in his new surroundings and he knows that school will be starting soon so I hope that it means that he will be prepared for that transition. He will be riding the special needs bus with one of the little boys that he often talks to here who is a neighbor. I have signed him up for hippotherapy (special needs horseback riding) and I am soooo thrilled for him, I believe that he is going to love it.

Griffin and I met his new pediatrician and she is awesome! She is referring him to a developmental doctor at the clinic for developmental disabilities where they can help us get OT and Speech. That is so excellent because he didn't have that in SC but he did have it in Alaska.

I am still a straight A student! I just made an A in my History of the American Indian class...I am so happy. I can't wait until I get my grade from my English Composition class, so far I have an A but there are a few assignments that she hasn't graded yet.

It is so nice to be near my friends. They came over two weekends ago with lots of linens, a bed for Griffin, and they decorated the apt. for us. They even rearranged the kitchen so that I had more space. My bedroom looks like a fancy five star hotel room, one that would include a bottle of champagne and a Godiva chocolate on the pillow. Now that's a first for me. I have hardly ever decorated my abode, especially not so much that everything matches, so it is really cool.

Everything is wonderful and I have nothing to complain about...Life is GOOD! I will take some pics of the gorgeous mountains and post them soon.

It's Official....We Have a New Place to Live!

I always love to see my precious angel sleeping and periodically take pics of him as he grows older. Not that he is not precious when he is awake but there is pure innocence when he is sleeping.

We finally got our new apartment in NC and it is nice...with 2 bedrooms! We have been just getting by with Griffin sleeping either on the couch or on the bed and then I would just sleep on the opposite. So this will be very nice, for us both to have our own space. The apt. manager lives above us so it should be very quiet there. She also has an autistic son who is about 17 years, I think.

Well, I won't have the Internet for a week or two while moving, can't afford the cost of the deposit. But as soon as I get it, I will post and let ya know how things are going for us. Got to find out which school Griffin will be going to and get him registered and schedule and IEP.

It will be so nice to be near my friends and sister, brother, and their families. A totally different atmosphere in NC than in SC that's for sure!

We are Moving North

I am so excited in so many good ways but a bit stressed out as well. The time draws near and we still have not found the right place to live yet. We have traveled to NC to look at apartments but we've got to get Griffin registered for school next week and run around two different cities to find the right place that will be most appropriate for him. All I can say is that I know for sure that the schools are WAAAAAY better there than down here! NC spends way more money on education, there are more qualified teachers who are knowledgable about autism and the TEACCH program as well. I just know that he is going to thrive there and I will have more support there also. My sister and brother live there and several of my friends whom I have known for many many years and are always supportive and understanding.

It will be nice to get out of the heat and humidity. I will miss mom, the sweet little old ladies that are here at the apartment, and my dear friends E.,C.,H., but all in all it will be best. We will visit mom so that she and Griffin can have some quality time together because he loves her so very much...of course, she is his NaNa. Besides, NC is a great place to visit, it is cooler, and far more beautiful so I am hoping that my friend E. and her family will come to visit us sometimes. Mom has obligations so she won't be coming up very often.

School is going great, I am ahead on my work but have two research essays due about the same time...that's a bit stressful but I can do it. One is in Chicago style which I have never used but I think(hope) that I get the hang of it. One is about Spiritual Agnosticism and the other is about The Trail of Tears which is heart-wrenching.

Speaking of heart-wrenching and the American Indian, after the knowledge that I have gained about them I will no longer celebrate the 4th of July because in 1776 things were fine and dandy for all the white folks but the American Indians were still being forced out of their homes, away from their homelands, the children were taken from their homes to be "Americanized" not to mention all the disease and slaughtering of men, women, and children that was going on. As far as I am concerned there is nothing worth celebrating when our forefathers were committing such horrible attocities. I could go on but I think that you probably have an idea of what I am talking about.

It's Time to Vent....Finally!

For those of you who know me, know that I am not one to complain about my health and all that I tolerate from day to day. I keep it all to myself because I see no point in sharing it with anyone...what good would it do?

Well, it is time for me to vent and enlighten those of you who might even remotely care. For the past month and a half I have had anxiety that is as though it is eating me from the inside out and is totally relentless regardless of medication or stupid and useless relaxation techniques. I am constantly on the edge and everything irritates me to no end but I dare not show it or say a word. Griffin bounces off the walls having a blast and I cannot enjoy these times with him because I feel like shit!!!!!!!!!!!!!

My insomnia has been horrible and even with medication once again I have it regardless. I awake at least twice a night if not three times. Usually I awake with the same anxiety that I had when I went to sleep. So my days are not only full of anxiety but I am exhausted at the same time.....every single day! My doctor has tried every medication possible and none have worked so he just gave up. And maybe you are thinking that I should try the natural route but NO NO NO, I have tried those and it is a big waste of money and it is money that I cannot afford to throw away.

I cannot read and relax because Griffin has the TV going and usually the computer too and my mind cannot focus enough for the words to make sense. So, what am I left to do? I cannot have a social life thanks to my father who won't allow my mother to watch Griffin so that I can have a break and have a life of my own. So here I am stuck and I hate to use that word but that is how I feel. What am I to do? Go out and find a perfect stranger to care for my child while I TRY to have fun on a date? I think not.

So, this is my perdicament and whether you hear it from me or not doesn't mean that I am not going through it. Don't know how this is supposed to help me feel better but I just felt that I need to vent and that perhaps it would be cathartic for me.

Time to Celebrate!!!!

This morning I was hastily making all the phone calls that we couldn't make over the weekend about Abby. Alas, I had just called the veterinarian to make sure the contact info was correct and not even 10 minutes later she called me back to tell me that somebody has our baby!!!!!

Apparently Abby got inside of a pasture that had chicken wire, got in it but couldn't get out. So, this woman who just so happens to be a dog groomer and had the pasture adjacent to her home, saw Abby and it took her an hour but she lured Abby with her dog and Abby came right up to them. I am so very grateful that this woman did the right thing by calling the vet and reporting that she found this dog.

Thank you to everyone who prayed for us and sent out positive energy into the universe. We are so thrilled to be a family once again.

We Miss Our Abby Girl and Feel Lost Without Her

It breaks my heart to even write this because to face the fact that we may never see Abby again is heart-wrenching. Yesterday, Griffin and I went to N.C. to visit our friends there and go to a baby shower. Well, we left Abby at our friend's house in the back yard while at the baby shower, thinking that she could not get out of the fence but little did we know that she could get out of the gate area with a lot of determination. And I feel horrible because she must have felt abandoned and thinking that we were not coming back for her so she took off looking for us. For hours there were 4 women and Griffin looking and calling everywhere but most places were closed because it was the weekend.

My stomach was doing flips and tied up in knots especially when Griffin kept asking where Abby was, it was all I could do to not cry. I am not giving up hope that we will find her safe and sound and either she is going to come back to the house in NC or she will make a long trip to our apartment in SC. Maybe someone has got her and has a heart big enough to let us know that they have her. I think that since she is a German Shepherd that most people will avoid her thinking that she will bite which is a good thing and a bad thing.

Please, dear friends, keep us in your prayers that Abby is safe and sound and that we will get her back. She is one of our family members and not just a "pet", she has served Griffin well as a service dog for 4 years and I am wishing that we will have her back for many more years. Life just isn't the same without her around because we miss her so very much. She has been loved so much and really bonded with us so I've just got to not give up on her and know that she loves us and will come back to us again soon.

Words of Wisdom

This is something we should all read at least once a week!!!!! Make sure you read to the end!!!!!!

Written By Regina Brett, 90 years old, of The Plain Dealer, Cleveland, Ohio

To celebrate growing older, I once wrote the 45 lessons life taught me.

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don't have to win every argument. Agree to disagree.

7. Cry with someone. It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye. But don't worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood. But the second one
is up to you and no one else

20. When it comes to going after what you love in life, don't take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words 'In five years, will this matter?'

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Don't take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn't do.

35. Don't audit life. Show up and make the most of it now.

36. Growing old beats the alternative -- dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come...

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow, but it's still a gift."

---

Back in School and Our Trip to N.C.

I found out that if I didn't put Griffin back in school that he would have to take 1st grade all over again, it is only for a few days anyhow. He seems to be doing much better on the Abilify increase to 7.5 mg. I got a great report about his behavior in class the past few days especially during Field Day, he apparently participated in all the events which is amazing for him since he doesn't like gross motor activities. So in spite of the schedule being completely different, he is doing very well. We had an IEP on Thursday but I was secretly told not to expect the principal to carry through with all that she had promised for next year. But, I have it all on tape so she will not have any choice but to follow through.

I found out some really good news while in the IEP; Griffin scored 70% on the DIBELS (reading fluency test) when he started in January, the average score for the typical 1st grader is 40%, and he ended with a whopping 96%!!!! His teacher said that he can read faster than that but since he read aloud they had to understand him so that slowed him down a bit. I am so proud of him! We are still working on comprehension of the abstract as it is difficult for probably all autistic kiddos.

Griffin and I went to N.C. Sunday and Monday last week and it was a blast. Griffin had two TVs both with Direct TV/VCR/DVD so he was in heaven. I got to visit with my dear friends all day and night, the picture above shows not only the beautiful flowers that were freshly picked from the yard but also the gorgeous mountains in the background. We sat outside under the umbrella as it rained and when the sun shined so it was a wonderful experience.

Griffin played in the rain for the first time in his life, he had never wanted to do it before. He danced around and laughed so hard. My friend got some great pictures of him but when I tried to post them they came out really small......bummer. Maybe I can figure out how to make them larger. I had just as much fun watching him as I think that he had playing.

Out of School and Taking Medications

I have made the decision to keep Griffin out of school and do my best to get to North Carolina this summer so that he can attend school there in the fall. There is a reason why Griffin is not doing well in school but does fine when out of school. I spoke to the doctor yesterday and we decided to increase the Abilify by 2.5mg and so far it seems to be helping a lot. He had one meltdown when we were out buying at TV because he broke his so, I think that he didn't want a new TV; he just wanted his old one to work. But it didn't last long and he pretty much calmed himself down. Since being home he has done nothing other than use the computer and make crafts all day, being completely calm and focused.

His teacher, his shadow, his speech therapist and I are going to have an IEP meeting next week and I am going to request that he have a shadow when beginning the second grade. I just don't think that he is ready to go it alone in what might just be an overcrowded classroom with one teacher. I hope that by then we will have his meds all straightened out and that behaviors will be under control and actually I am hoping that he is either in a private school here or in North Carolina public school system by the beginning of school. There are 8 autism classrooms in the area where I wish for him to go in NC which translates to the fact that they are better trained and also have a great resource in the autism teacher if there were to be any issues in the mainstream classrooms.

I spoke to my dear friend in Alaska who was Griffin's very first therapist to work with him at age 15 months until the age of three and she has faithfully kept up with what goes on with him; she thinks that it is best for him to not be in the classroom because there are probably a lot of changes going on that is bothering him. She was a teacher for many years and told me that this time of year things are more lax, there are things be changed all around. This is true because Griffin was scheduled to not see his speech therapist and math teacher anymore. Even when the changes are small it still effects him.

That is one very legitimate reason why he could be misbehaving so badly. His doctor told me that the Focalin XR would show a difference immediately and that it is not like other meds that need to reach a therapeutic level. So since that didn't work then maybe the Abilify will. I like what Melissa H. said about the thoughts of taking a child off of a drug that helps them cope with their behaviors; she likened it to taking insulin away from a diabetic child. And it reminds me of when people tell me that there is nothing going on with me when I in fact have Bipolar Disorder and could not live without my drugs, yet they dispute that I need anything at all. Griffin is no different, he needs those meds to help him get through the day without hurting himself or somebody else. Without his meds he is angry, totally disorganized mentally/emotionally, and has absolutely no control of himself.

It is a shame when people do not realize how mental illness and instability completely wrecks any quality of life that one might otherwise have. I fought for years to not give Griffin meds for insomnia and it was pure hell for both of us for a long time. We were both a big mess, I had no patience, I was unstable and neither of us had much fun at all during those long months. That was just plain ole stupid! Neither of us need to go without sleep for very good reasons and we both need to be stable so that we can thrive and make progress in our everyday life.

I have to have faith in the medications because the alternative is absurd and I trust his doctors, the ones that he had in Anchorage and the ones here. The way I see it is that if a child of a young age can have chemo and live through it then taking low doses of medication is not going to harm them in the long run. The body is an amazing machine that can take a lot more than some people think that it can. I am a good mother and I feel that I am doing the best for my child concerning meds and the school situation.

We will get through it no matter what, one way or the other.

Griffin is Still Having a Hard Time at School

Melissa H. maybe you might have some ideas of what might be the issue here. Griffin is just flat out being obstinate at school and totally refuses to do anything that is required of him. They have tried all kinds of different approaches and nothing has worked. He has even started to ignore his PE coach whom he claims to like and his teacher he ignores even though he likes her too.

He is fine at home except when he has to take a shower/bath and most times he loses it but will ultimately end up giving in and going through with it. I guess that perhaps he is okay at home because it is his down time and there is not that much required of him except for homework. As far as that goes he does it willingly but usually has to be reminded constantly to stay on task.

My dear friend of mine thinks that maybe because he doesn't like his shadow that it could be stemming from that and just branching out to others. I am just so glad that there are only a few days left of school but what about next year? How do I get things straightened out before then? How can I prepare him for second grade where he will have no shadow to help him cope?

Today was the first day of the increase in the Focalin XR up from 10mg to 15mg so I guess that we shall see as it gets to be at a therapeutic level. I feel so bad for him because I just think that he is feeling weird/miserable and that is part of the problem, he just loses control of his emotions. Goodness knows that I have been through that with my Bipolar ups and downs with meds that weren't right for me and needed to be adjusted.

Melissa, do you think that these symptoms could be from the Bipolar and that maybe we need to adjust his Abilify? Tina, what do you think about it? Do you think that any of this could be something other than a medicine issue?

I need some advice!!!!!!!!!!!!!!

I Figured it Out and it was So Simple!

I fixed the Blogroll, it was so simple and easy, all I had to do is to start a new one and go in there and put in 200 for the amount that could be displayed all at once. Silly me!

How do I Fix Blogrolling List????

The new site counter that I got wouldn't start at the amount that the old was at: 29,349. It only let me start at 50. so now I no longer have a clue as to how many hits I have had on my blog......unless I do the math each time of course. Oh well, it doesn't really matter that much, it was just kinda cool to know. Oh, and I am working on getting my blogroll back to the very long list that it used to be as a wealth of information on autism and my favorite blogs of all of my friends. When I updated my blog it totally got rid of a bunch of stuff, so I am starting from scratch. What I need to know is how to make the Blogrolling List work, it is not showing all the blogs and web sites that I have listed on the Blogrolling Web Site. Does anyone know how to do that????

School will be over in about 2 weeks and I will be so glad, I love to have Griffin home with me just like we used to have when we home schooled, he is so delightful........well, most of the time. Tonight he totally lost it when I told him that it was time for bath or shower so after an exhausting 20 minutes I told him that it was time to go to bed early and he was actually happy with that. Tomorrow, I told him, he is taking a shower/bath as soon as he comes home from school, no more nonsense!

If any of you have a comment to make on whether I should medicate Griffin over the summer, I would like to know. In one way it helps him to have a better quality of life with few to no meltdowns but on the other hand they are drugs and what are they doing to his liver and kidneys? I take several meds which I never ever miss and I can only imagine what my body thinks about it, in the long run. I have to have them and not having them is not an option. But for Griffin, I just don't know what to do. Please help me out!

Redhead....What do ya Think?

On a whim I colored my hair red because I used to be a redhead and had a lot of fun with it. I like how it makes my blue eyes stand out and all the great colors that I can wear to compliment it. Besides, I couldn't afford to go to the hairdresser and get my blonde hair highlighted so this was a very cheap alternative.

Griffin has been out of school for a couple of days due to the fact that he couldn't hold food down in the evenings when he came home. The problem was that the Focalin XR quelled his appetite and he hardly ate a thing for breakfast and lunch so by the time he got his appetite back in the evening, his stomach wasn't used to having food and subsequently rejected it.....all of it. So I took him off the medicine and slowly got him used to food again, although he vomited several times in the interim he finally has held down some yogurt and is back on track. I gave him half his usual dose of the Focalin XR this afternoon because we went to pick up his homework from the school and I wanted him to be able to focus in order to finish it all.

He spent a good part of the day at his NaNa's and PaPa's yesterday and at one point he laid down and asked her to lie down with him and he rested for awhile. The poor guy must have been exhausted from vomiting and diahrrea and not getting any nutrition for almost three days. Now he is in a great mood doing his homework and later I will try him on a bit of bland food to see if he can hold it down. I think that tomorrow I will try him on half a dose and see if he has an appetite or not. When they have lunch I will make his favorite food and take it to him to be sure that he eats something.

Oh No.....Meltdowns Again?

On Tuesday Griffin had a really hard time at school, so much so that his shadow called me and when he got home it wasn't any better and it has gotten worse with each passing day. He just loses control of his emotions and lashes out at whatever inanimate object is near. Yesterday afternoon he hit his TV and he flew to the floor, thank goodness it didn't break it. I just don't know what to do to help him especially while he is in the midst of a meltdown. Mostly because I don't usually know what triggers them.

I went to see his doctor today and we decided to take him off the Focalin XR for the weekend and see what kind of results that yields, I don't know for sure but I think it's going to be a rough couple of days. The thing about it is that no matter what we are doing or where we are he still has them even if it's something going on that he likes.

Several hours after writing the first two paragraphs, when I went to pick up Griffin his shadow and teacher told me that he did great today and that they think that maybe the meltdowns were caused by him having congestion that he no longer has today. So far, since he has been home for about an hour now, everything is okay and I haven't given him a second dose of the Focalin XR.

We'll play it by ear and see what happens over the weekend, maybe it was from him feeling a bit under the weather........who knows?

Griffin and His Dance Performance

I took a short video of Griffin at his dance performance at school but apparently it is too large a file 12.7 MB and on here I can only upload 11MB...Bummer! Anyhow, he did a great job, he didn't miss a move/step and kept up with the music and other children perfectly. They did two dances, his shadow was beside him on the first one but he danced with a classmate on the second one. My mom went with us and we first went to his classroom to see all of his excellent writing and artwork, his shadow had showed me the difference from before the new medicine and after and it was so incredible and creative afterwards. She said that he came up with the sentences all on his own, he even wrote a story or two all by himself. I am so very proud of him and all of his accomplishments.

The photo is of Griffin at bedtime with his Doodle Pro and his VHS tape, he has been drawing and writing like crazy and he has perfected a lot of what he does because he will write/draw them over and over until he is satisfied with the outcome. He seems to find it very relaxing because he does it throughout the day and into the night and he is always so mellow when he is using the Doodle Pro.

He had a major meltdown today, his shadow called me and asked if he had had his meds in the morning and he had. So I called his doctor and he said that we just don't know enough about autism to figure out what causes meltdowns sometimes but for sure it wasn't the new medicine causing it. If he does it again and it is so severe then we might consider increasing the Abilify for severe mood swings. He has been taking it for a year so it might be time for a change or it could have just been a sensory overload.

Griffin is lying down about to go to sleep so I am going to go tell him goodnight and see if he will let me snuggle with him until he sleeps.

Superstar Student for a Week

Griffin was the Superstar Student for the week which I thought was really cool. I took Chuckey Sue on Friday to show to the class and the teacher was amazed at how mellow she was. Chuckey Sue loves to be held and petted therefore she doesn't try to scamper away like most little critters. He seemed to feel so proud that his mommy and his pet hamster were there in front of the class and they had lots of questions to ask about her.

Each day is so amazing, Griffin is so much like a new guy all the time and it is due to his recent addition of the Focalin XR. He is like two different individuals when he is on and off of it, he is so relaxed and calm when it is in his system and he doesn't get frustrated with most anything at all. He stays on task and focuses on whatever (one) thing that he is doing and doesn't move from one project to another as he used to.

I went to a gathering of sorts to sell handmade soap and skin care products for my dear friend in Washington state but it was quite disappointing. The products sell themselves because they are so incredibly awesome but the only major problem was that there were so few people attending and there just wasn't enough traffic perhaps because it was so far out and there was a big event going on in the next town over. Oh well, maybe one of you would like to try some, just let me know because you will not belive how wonderful this soap and lotion and other products are. The soap is made with pure essential oils and goat's milk and it doesn't leave your skin dry and taunt. The lotion is my favorite because my skin loves it, I only have to use a small amount, it doesn't break my skin out but for sure my skin is softer and always feels moisturized after each application...I use it morning and night on my face, neck, body, feet, and it helps with that super dry skin that is on the feet and elbows. It is very healing especially for sunburn and many other skin conditions. Let me know if you would like samples and I will get them to you, you will just love it.

I made an "A" in my World Religions class and I loved every moment of it and learned a lot. I do look forward to the next class and learning lots more in English Composition. Did I write about that already? Hope not but it is quite possible....sorry if I have...silly me!

You are so Right Melissa H, Thank You my Dear Friend

I will no longer write to or concerning the anon individual who keeps posting and subtley attacking me about how I am being an overly sensitive mom and that the teacher from Griffin's past was "doing her best". No longer will I waste my energy on this, I have support from my friends who totally know the two of us and who know that I am a damn good mom to my son!!!!!

Almost a week ago I took Griffin to his pediatrician and the two of us agreed that we would try Focalin XR for Griffin's attention difficulties and by George..........it is working like a charm! He has excellent reports from school that his behavior is stellar and he is progressing again as he once was. Since it is an ADD med then I thought that he has ADD but the child psychologist that we went to see yesterday explained to me that he does not have multiple diagnosis, that those behaviors and challenges are part of being autistic, even the once thought of...bipolar disorder. I had no idea of this even though I have spent years and years researching and studying all about autism. I guess that some docs do give multiple diagnosis and that's okay, as long as the child is getting what he/she needs.

I am noticing fewer meltdowns, virtually none, and a much happier young man who is the happy-go-lucky little goober that he once was. No longer is life a big fat challenge where making a simple decision is a major ordeal. And what's really great is that he is responding well to the lowest dose possible, he is not even up to the theraputic dosage.

Another thing that I learned from the child psychologist is that there is a list of things to do and not to do in order to help one's child become more independent and the first two are the least intrusive thereby causing no meltdowns (or at least fewer) and the others are most likely to cause emotional disturbances and create a more dependent child. It goes as follows:

eye contact least intrusive most independent

visual aids more intrusive less independent

verbal cues more intrusive more dependent

tactile help most intrusive most dependent

So if you can get the message across through eye contact then it is ideal and visual cues are most effective in that they teach the child to be more independent (like PECS or even pointing to the task) or for Griffin I just write on a piece of paper and make a visual schedule for him (now I do). To verbally give instructions takes away independence and frustrates the child because he/she is not doing things on their own. Of course helping a child with hand over hand or leading them to where the task is to be executed is the most intrusive. And I am so guilty of doing that. I used to lead Griffin to the bathtub to take a shower and every time he would have a meltdown so now I just point and he is fine. Isn't it amazing how simple things can be?

One Must be Familiar with the Circumstances in Order to Form an Opinion

http://thisschoolmistreatedmyautisticchild.blogspot.com/

This link is for Anonymous who says that she is a teacher and to not blame the teacher for what has happened to Griffin. If you only take the time to read this blog you would know where we are coming from. You are apparently not familiar with what has happened and if you are and you are still saying that then something is very WRONG.

Just take a moment and read what I have written and the written material that his past teacher sent home with him and keep in mind that my son is autistic not Down Syndrome and not an Neuro-Typical child either.

Sharing What Works for Parents and Teachers of Young Children with Behavior Difficulties

Amanda left a comment on this blog and I found my way to her blog, it looks as though she just started it but it is awesome. Check it out it is called: Learning to be Buddies and her first post is about Body Language, Empathy, and Facial Expressions....it is so informative and fantastic. She is a teacher in Australia and has a very open mind and appears to be quite intelligent and loving.

How 1 Young Autistic Man Runs a Business

Joe Steffy is off to Overland Park, Kan., this week to do a PowerPoint presentation on his business, Poppin' Joe's Kettle Korn. He's a 23-year-old small-business man with a goal of $100,000 in sales by 2012. Joe also has autism and Down syndrome and is nonverbal. When he gives his talk, he will push buttons on an augmentative speech device to deliver the words. His audience will be parents who fervently hope their own special-needs children will be able to work, too.

Joe's parents, Ray and Janet, of Louisburg, Kan., didn't agree with the assessment of the school district in which they lived previously, which had said Joe would never be able to work or live independently. "I'm one who can easily get ticked off," says Ray. "That ticked me off. We saw more in Joe than that. We set out to prove to the school that he had capabilities." They came across kettle corn while on a trip to Alaska and realized that all that popping, scooping, and serving suited Joe's love of work.

The path to Joe Steffy's success was not an easy one; Ray Steffy worked closely with Dave Hammis, an advocate for self-employment for people with disabilities in Middletown, Ohio, who trains business owners, government employees, and parents on how to make use of state and federal programs. The Steffys wrote up a business plan and helped Joe secure $25,000 in grants from programs like Social Security Administration'sPlan to Achieve Self-Support program (PASS).

In 2005, Poppin' Joe's Kettle Korn was born. Sales have grown from $16,000 in 2005 to $50,000 in 2008, both from selling at festivals and from delivering popcorn to local outlets. Joe has five part-time employees, and his parents help out with driving and other tasks. "Pop and everyone that works with him knows whatever Joe wants to do you let him do, because he's the boss," Ray says. "If he wants to pop, he'll shove Dad out of the way and pop."

If the business stays on track, it should be grossing more than $100,000 in three years, and the Steffys are seeking a business partner who can work with Joe to manage the business. Joe is no longer on Social Security disability payments; instead, he pays state sales tax and state and federal income tax. He rents his own house and is helped by caregivers who are paid by a state program.

"It's been hard work, from the standpoint of physical work," says Ray Steffy, who is 67. "But a parent with a child like Joe has a choice. You can either kick in and do this kind of thing, or you can sit and fret emotionally with the amount of energy, worrying about what's going to happen to them."

The payoff for that effort, as far as the Steffys are concerned, has been priceless. They see their son make a local popcorn delivery, accept payment, fold it, and put it in his pocket. When he walks out, his dad says, Joe looks 3 inches taller than when he walked in. 

US News. Written by Nancy Shute

Spring Break

Griffin's behavior since he has been out of school has been simply wonderful, no meltdowns at all. He cleans up and does his chores without any flack and he has been just perfectly polite using his manners at every turn. Don't know why he is being so difficult at school but he has been fine at home. I asked his OT yesterday about his behavior and she told me that yes, he does tell her "No" but she is firm with him but at the same time she gives an inch and in return he gives a mile. Maybe that's what needs to be done at school. I don't know if his teachers and his shadow have experience with autism or any kind of training but I do plan to ask during the BIP meeting next week.

I had thought that this week would be a challenge but we have had lots of fun together and I am pleased with his behavior. I made an A on my research essay that I wrote about "Wicca Today in America". The professor gave me a 29.5 out of a possible 30......WOO HOO!!!! My next challenge will be the final exam in 2 weeks. But so far so good!

Yahoooo!!! Somebody Sees My Side of Things and Tells the Truth

Anonymous wrote: (see what I wrote in the previous post about this comment)

Please stop blaming his past teacher. As a teacher of children with autism this will do you or your child no good. Educators may make mistakes but are not the cause of your child's behavior. When I see this with parents who have children with behavioral issues it is so frustrating and really helps noone.

April 05, 2009 11:12 AM

 Anonymous said...

To clueless Anon.- what is frustrating are "teachers" who are teaching kids on the spectrum who have NO CLUE. If you read closely regarding this case in particular that teacher had no behavior plan for this child, no clue how to break down skills and teach in an errorless manner using positive behavior practices (which is required by FEDERAL LAW) and she used extremely reactive and punishing procedures. "Teachers" such as that should stop pretending to understand how to teach kids on the spectrum and should STOP denying the kids FAPE under IDEA. Furthermore, there is an old saying in good ABA teaching in particular (and in all methods of teaching kids on the spectrum)--when a child is having problems "look to the teaching, not the child" meaning it is up to the teacher or therapist to have a complete understanding of behaviors and erroless teaching and be delivering it in a way so the child is successful. Teachers who have no clue to the extensive needs of autism spectrum children end up increasing their behaviors and then who do they blame? The child of course. Really, do the kids a favor and get out of the industry. You are destroying the kids who need experienced instructors.

April 05, 2009 2:13 PM

To clueless anon. Please read the other message I posted and get the hell out of the industry if this is your attitude towards parents and their children on the spectrum!

My Child is NOT to Blame and YES the Teacher is to Blame

 This post is just a reply to a comment left on my last post stating that I should stop blaming his old teacher for his behavior issues in the present. And that teacher's make mistakes but they are not to blame for his behavior issues now. 

What I have to say to that is that , yes teachers do make mistakes and quite often they make a lasting impression on their students, I remember things that my elementary school teachers did to me and how they have effected me over the years and still do to a certain extent. So how is it that a teacher scorning a child for making mistakes does not leave a lasting impression? Pray tell.

I believe that teachers have to own what they do and don't do to their students to take responsibility for their actions and words used in repremanding a child, they should think twice about what they do before saying or doing something because the memories do last forever.

I Think It's Time For A BIP

I got a long typed out letter from Griffin's shadow today and apparently he is having some major setbacks as far as behavior goes in all areas and times during the day. He has a really hard time making choices which I think stems from the teacher who was abusive to him nearly 2 years ago. She belittled Griffin when he made mistakes and now he is afraid of getting things wrong and making choices. 

His behavior at home has not been stellar to say the least, he pitches fits when he doesn't get his way and starts screaming and crying then just loses control of himself. I am firm with him and tell him not to yell at me and that he needs to calm down before we can discuss his choices. Usually he will calm down but it takes him at least a good 30 minutes to do so.

So, I think that it is time for us to have a BIP in place so that he will know what is in store for him if he misbehaves. I put a note in his folder for his teacher and shadow. His shadow tells him as Griffin is about to go home from school that he needs to go straight home and do his homework and not to give mommy a fuss about it and it works! He hasn't given me any grief about homework at all, he sits there and does it all on his own and most of the time without asking questions of me.

I believe that if we have a Behavioral Intervention Plan in place and it is used across the board then he will straighten up. He has been really good at pushing buttons and it is time for the buttons to be moved around and have new consequences for his bad behavior.

It has gotten so bad that he can't even make choices for what he wants to eat during lunch and at home he is stuck on fish sticks and french fries and seldom wants anything else unless it is macaroni and cheese. If I suggest anything else he loses it and it is just ridiculous. I don't know if any of this comes from his Bipolar Disorder or not but I plan on asking his doctor if he thinks that his meds need to be tweaked or not. His shadow just thinks that he is just being a stubborn (my word) obstinate (my word) 7 year old. She is so incredible and does such an awesome job with him she is sweet until it is time to be firm and she is great at both.

I made an 84 on my midterm so I still have a 91 (A) average but have to do well on my 8-10 page essay that is due next week. This week we are studying Judaism so I am excited to learn all about it.

Griffin's Swimming has Vastley Improved

If you watch the video you will see how well Griffin is swimming and it has improved so much just in the past few months. He is actually using his arms and legs at the same time! I am so very proud of him.

The challenge that his teacher and shadow have at school is that Griffin is being stubborn about learning to listen to the teacher and not expecting the shadow to give him all of his cues. Our goal is for him to be independent and go into second grade without the shadow. Regardless of that he is doing very well academically and he is doing all of his homework without me around, I watch him from a distance and he stays on task until he is done.

I made an A in my first class online! And I made an A on my first essay for my current class, World Religions! I love this class and all that I am learning about religions even though I am agnostic I still find it fascinating. All the different beliefs and what they dictate for their societies is so interesting. I am on Hinduism right now and have Buddism next. I am writing my final essay on Wicca and it's growing popularity in the United States and the effects that it will have on our society. I love to write so doing essays is a welcome challenge for me.

Griffin is Now the BIG 7 years old!

 We had a great time in NC visiting my sister and then staying with some very close friends of mine, talking, crying, and laughing all night long. Griffin loves to stay there because he has all the things that are precious to him: his DVR, all of his characters, all of his DVDs and DVD player and lots of doggies to play with and watch. We took Abby with us and she had a blast because she had a huge backyard to play in and run around like a puppy.

Well, I have good news about my health...I don't have to have surgery on my ankle but the ortho doctor told me that because I have Fibromyalgia it could take up to a year for it to heal, that part's no so great 'cause it still hurts like heck.  Been having some manic episodes lately which totally sucks! Actually it's more like rapid cycling which is even worse but I see my doc on Wednesday and I trust that he will fix me right up with all the right meds. He is by far the best doctor that I have ever had--bar none.

I've been brushing up on reading hands/palmistry again, I used to do it many many years ago all the time but have forgotten a lot of it. It is so fascinating and I love it. Doing great in school, just finished my final essay 2 weeks early because I was so excited to do it, I just love to write. Hope I did as well as I think that I did.

Griffin has a pretty bad ear infection and vomited last night, don't know why unless he caught some stomach flu as well....poor little guy. I feel so bad for him but to see him you wouldn't be able to tell that he is sick because he just continues on with life and doesn't let it get him down. Did I mention that he is in the accelerated reading program? Yep, and he is doing excellent!

My Little Guy is Growing Up

As you can see Griffin lost his first upper tooth and it is so bittersweet because he is growing up so fast and although I am proud of him it is still kind of sad. Lately he has shown more and more need for independence and having his own space, much more than ever before. So mommy yields to his desire and often it nearly brings me to tears. 

Yesterday Griffin had in his backpack a note from a little girl in his class that had been put in his cubby apparently. She wrote: Dear Griffin I like u Yvonne with a picture she drew of a little boy and girl holding hands...............for sure that brought me to tears! I can't believe it, that he has already gotten his first love letter and he has only been in school for 2 weeks! His shadow told me that he likes another little girl named Brittany and I asked why he had singled her out and she said that "She is very pretty and has long brown hair". But when I asked what Brittany thought of Griffin she replied that she didn't think that she noticed him but I truly doubt that he really cares.

Griffin has been getting nearly all 100's on all of his school and homework and his handwriting has improved 10 fold just in the past week. When we do homework he tries really hard to make sure that it is correct and that he stays in the lines. He is really slow and careful but that is a good thing because the speed will increase over time.

I have been "in school" for only about 3 weeks now and I am at the point where I sometimes get overwhelmed and I am only taking one class. I guess that I just need to get used to it and figure out how to pace myself. I find that I need frequent breaks or else I end up just starring at the screen while attempting to read and accomplish nothing. It is very good for me to be using my noggin once again and to have that intellectual challenge that I have been missing for so many years so I love it! Next month I will begin World Religions and I am very excited about that. For the better part of adulthood I have been fascinated with spiritual beliefs and how they all seem to have a common thread. Especially after reading Joseph Campbell which has made me more aware of not just religion(s) but also of my own spirituality. Even though I am agnostic I do consider myself to be a spiritual individual, it is something that is very personal and private.

My health has not been too good lately. About 2 or 3 weeks ago I began having episodes in the evening where my head would tingle and my skin would crawl really bad. Then I feel foggy and disoriented but had no pain. I noticed that only if I lie down it would lessen but as long as I was standing or sitting the symptoms would not go away. I went and am still going to see the neurologist for tests: EEG, MRI, sleep study, and a test for my circulation to my head. So far all I know is that my circulation is okay but we haven't ruled out seizures or having something else going on in my head. I will find out on Feb. 4th.