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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 |