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BEFORE YOU READ THIS, I just thought I'd mention that I've set up a messageboard for Discussion about ADHD, Autism and Nonverbal Learning Disorder.  It's very new and not many people have seen it yet, so please join up and tell about your experiences.  The link to the forum is on the navigation to the left.  Thanks.
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Well, after some deep thought and picture sorting, I've come to realize that Max, like Marjorie and Ian, needs his own website, thanks to the tons of pictures I keep getting and the big changes that happen to him as he grows up. 

Here is a little bit of background for those of you who don't know or for those of you who are, like I was three years ago, searching for answers to your thousands of questions about Autism and how it's going to change your child and your family's lives. 

********The beginning**********

Max was born on March 20, 1998.  He was a huge baby, my third, and my new husband's first. Everything went pretty well.  Max grew, did normal little   baby things right on time.  He was a very normal little baby boy.  We have pictures from Thanksgiving with his grandparents where we were all siting at the table and eating.  He spoke a little.  Just a few words.  Bath, bottle, Daddy, Mama.  Typical words for a little boy of two.  But then, halfway to three years old, and over the course of about two months, Max started to change.  He lost his words.  He would no longer eat with us at the table, nor would he eat what the rest of us were eating.  We took him to an Ear, Nose and Throat in the fear that maybe Max had lost his hearing.  On our third visit, we were taken aside and told by the specialist there that she had "seen this behavior before" and she "hated to be the one to tell us but" she thought we should have him evaluated by the DEC (Developmental Evaluation Center).  She was the first person to mention that strange new word that is now spoken almost daily in our house, Autism.

We were instantly in denial. 

Over the next several months we tried not to think about it.  But in the back of our heads, we had a nagging feeling there was something to what she had said. 

Then, my Mom stepped in and said that maybe be should get Max evaluated, and she called the DEC.  They set up the appointments and off we went.  It took a while.  Several days of meetings and testing and each day we went I would come home and look it all up on the internet.  So, by the time we were in the final appointment, we weren't surprised to hear the final diagnosis.  Yes.  It was Autism. 

At the time, they didn't clarify where on the spectrum Max was, but now we are all pretty sure he is low functioning.  He has all the symptoms of classic Autism with just one exception.   Max is extremely affectionate and loving.  Other than that, he’s got pretty much everything else. 

********Now*********

Max is six years old and just completed Kindergarten.  He was in a special class for Autistic kids that he will be in again next year.  They are extremely good with him and he’s made a lot of leaps forward. 

He still doesn’t talk and may never talk, but he does babble and hum to himself in a very monotone voice and he loves to hear himself scream and yell, so we’ve all learned just to hold our ears and wait for him to finish. 

We have been told by both his teachers and his Occupational Therapist that he definitely has the ability to learn, and that’s a wonderful thing.  He has finally learned how to play with puzzles and he enjoys his shoebox tasks.  He’s learning how to swim through a program at the YMCA one day a week at school.  He’s been to a zoo and gone horseback riding and even been on a boat ride! 

He loves to play piggyback with his sister and brother and even sometimes plays stacking things with the cat, though I don’t think she thinks of it that way! 

He still tears everything up, including books, phone books (he tears out only the yellow pages), papers, etc.  He still throws everything he can get his hands on to the floor.  He still bangs his head when he’s angry or frustrated.  He hits when he’s happy and screams when he’s happy.  Still wears diapers with no end in sight.  Has no interest in the potty at all.  Loves baths so much he wants at least three a day when he’s home all day, and will play with any water he can find in the house, like a bowl in the sink, or the cat’s water dish!  When he gets angry at a toy he throws it.  When he gets angry at the cat he pushes her away.  (She’s a very patient cat!)  He takes our hand and drags us to the fridge and makes us open the door and puts our hand on the juice jug when he wants juice, does the same thing for his food, his cereal, etc.  When he wants his diaper changed he either takes it off and brings it to me or he takes me to our usual changing spot and puts my hand on his diaper.  He refuses clothes at home more often than not, and used to refuse them at home altogether until we found some very loose fitting overalls and t-shirts with loops on the shoulders to hold up the overall straps.  Those he loves, so we bought four of them!  He loves the Wiggles and Bear in the Big Blue House on the Disney channel.  He loves music of all kinds and will come sit with me when I’m listening to music he really likes.  He feels pain only when it is pretty severe, but can be very fearful of places like doctors' offices he’s not familiar with.  He is incredibly strong.   He really seems to understand our words to him and he has a good sense of humor.  He actually laughs when I make a joke he understands!  His teachers agree with us about his understanding of language.  The other day he was looking at the cover of a book and I said, without making any gestures to him, “I wonder what’s on the back”.  He turned the book over and looked at it!  He has an uncanny sense of time of day.  He knows when things should be happening.  For instance, when he goes to see his OT, he takes her to his shoes and socks just before it’s time for us to come get him.  She is very impressed with this and so are we!  At home, he knows when Daddy is supposed to leave for work, (Cliff works the overnight shift), and he will wait by the door to wave goodbye while his Dad gets ready, or he will get upset if Cliff hasn’t left at his usual time when it’s his night off.  These are things we have watched change in Max over the last several years and particularly this year.  Will he ever talk?  Probably not.  But will he ever communicate?  I’ll bet he will.  And it will be fascinating to “listen” to everything he’ll have to say. 

So the future means Max will probably always be living with us, but I think it also means he’ll have a pretty good life.  We’ve learned, thanks to his teachers, that things we were afraid to allow him to do were just the things he seems to need and crave.  The new adventures and new experiences like horseback riding and swimming that we were afraid to let him do because we didn’t think Max “could”turned out to be the very things that made Max open up.  Even things like Special Olympics helped him do better.  He had to train and work hard and then compete with others.  And he did very well! 

I guess the best things I can say to someone who stumbles on this page while going through the first pangs of grief after finding out their child is autistic are; number one, Don’t Limit Your Child.  Let him experience all the things he can.  And the second thing is Don’t Try to Force Him to Be “Normal”.  He does that thing he does because he needs to recenter himself and feel he is attached to his body.  He acts out or does “bad” things usually to get you to pay attention to him or simply to work off a little steam.  Put Away The Fragile Things You Care About and be prepared to have to throw away things you missed and left out.  Put things away all over, everywhere.  You may think the medicine cabinet in the bathroom is safe, but if you don’t keep it shut completely,  everything in it will be lined up in a nice row somewhere in the house mixed in with stuff from the kitchen, the other kids’ bedrooms, and your child’s own toys.  In other words, you have to keep your home “baby proof” for quite a long time.   I’m not sure for how long, because we still have to keep ours that way.

And here’s something others have told us.  It Does Get Better.  There will come a time when Max will want to eat something besides the four things he eats now.  There will come a time when he will be able to use a communication board to let his feelings and needs be known rather than banging his head on the floor or dragging us to the fridge.  He will someday be potty trained.  He will someday be able to bathe himself and brush his teeth and eat with a spoon again.  Someday. We just have to keep working on it and waiting for that breakthrough day when he understands why we keep sitting him on that funny chair in the bathroom, or when he decides to try a hamburger or some potatoes or a bowl of Rice Crispies and discovers what he’s been missing, or the day when he learns to use the board to talk to us and says his true first words.

And, no matter what, Love him.  Because, even if he can’t say the words and even if he refuses to be hugged and cuddled and kissed, he still loves you.  If he could he would tell you so.  If he could he would show you. 

I believe an Autistic child is the ultimate test of your own unconditional love. 


Thanks for stopping by,
-Bonnie