Single Moms Raising Autistic Sons

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Wednesday, November 25, 2009

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

Sunday, November 22, 2009

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.

Monday, November 16, 2009

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.

Friday, November 13, 2009

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 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.

Sunday, November 08, 2009

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!

Thursday, November 05, 2009

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.