Tuesday, January 02, 2007

Ben's growth

This is going to be my last post for a while. School begins tomorrow, and with it a schedule that allows me to do little but lurk.

A lot of positive talk about autism deals with our children's growth. Autism isn't equated with stagnation, although other's might have you think different, with their scare tactics meant to cause you enough anxiety to buy into whatever they are selling. They grow, but in a different way!!

I am going to tell you about my life with Ben as I see it; the good, the bad, and the ugly...the ugly mostly being my misunderstanding or anxiety. I have been trying to think of something to leave you with, and this is what I've come up with. Please don't judge the ignorant parts, I only tell you because I know others may have been led the same way, and I don't want you to make the same mistakes.

Ben, age 0-1:

What a sweet angel, a gift from God! We waited 13 years to have a child, and put everything we had up to borrow against to pay the $15,000 to adopt Ben. It was a private adoption as we were too old to be accepted by an adoption agency (37).

I babysat for a family for years before Ben came, and their last child was born 10 days before Ben. After a respite, I had little Maddie growing up right along with him.

At age 4 months, I noticed that Maddie would smile and give lots of eye contact. Ben never looked at me; in fact, while feeding he would turn away to look at the t.v. or the wind blowing in the trees outside the window. It seemed he needed more movement than my face allowed. I went to a program for babysitters where they talked about "holding time", which was a "miracle cure"---the first among many--for children who were not "attached" properly to their parents. I attempted to make Ben look at me...It never worked and my husband made me stop as it made Ben cry. I gave it up, but never forgot. Ben never gave me anything but fleeting eye contact until he was 2.5 years old, and when I went to the doctor at age 4 months with my concern...she told me I was crazy! She had seen children who failed to bond, and Ben was not one of them! "Look how he clings to you!" she told me.

Lesson #1: Children with autism bond in different ways. With Ben, it was physically attaching himself to my body when I carried him. Think about it, carrying meant MOVEMENT, which he enjoyed! My hip was his docking station to the world!

A lot of people read to their children...Ben would not sit still for it, so I sang. It soothed him and put him to sleep, and I enjoyed it!

I just have to add this: We had one of those "jumpers" that you attach to the top of the door frame. He used to go nuts on that thing, like a little bungie jumper, for a half hour at a time, smiling and giggling the whole time.

Ben, age 1-2:

Ben was a late walker. He had frequent ear infections, and somebody suggested a local chiropractor who had helped others. He said it was an allergy to milk, so we cut way back, and Ben was walking within the week at 15 months old. The infections might have been making him too dizzy to walk. No more infections, I kid you not!

He was so cute! He would often ask for me to sing "Sunny Skies". I can still hear his little voice, "su--ee skies". Then he would do this little dance and smile.

He could name lots of nouns: butterflies is one I remember. Sarah, the elderly lady who still keeps in touch, said he was "brillliant".

These were the good years, the calm before the storm.

Ben, age 2-3:

Ben could say the "Our Father" at this age. I remember it distinctly as he always said, "Deliver us from eagles". He could sing "You Are So Beautiful To Me" and make grown men cry.

We were growing concerned because he didn't always answer to his name. We went off to have his hearing tested at age 2.5, but he would not sit still for adequate testing, so we put it off for a while.

It wasn't until my sister-in-law told me Ben reminded her of a child she had babysit with autism, that it came back into view. After about a month of denial, when I was ready, I took this info to my doctor, who had a daughter with Downs.

"I think he's PDD", he said, and suggested a MRI and EEG, which both turned out negative but were very difficult to obtain. I thought "PDD", with it's "developmental disorder" was the new way of saying he was retarded. I became very depressed, but at the same time looked up all the information I could at a college library computer. It seemed like overnight my "brilliant" child became "retarded". Fear and anxiety consumed me. I was sure it was up to me to "heal" my child. My college degree was in Special Education, and I had a life-long interest in biology. I was meant to have this child...

Mmmmh....I think this is going to have to be an installment...

If I'm boring the hell out of you, or being too offensive, please let me know.

Natalia, if you are around, try contacting me at rosewalker1 "at" cs.com


Kristina Chew said...

Charlie walked at 15 months too, if not 16. Thanks so much for sharing all of this---it helps so much to know about Ben's story. I'm wondering what you might think about Ralph Savarese's forthcoming memoir of adoption and autism, Reasonable People

Your words will be missed! Already look forward to your next post.

Kathy said...

Looking forward to the next installment Rose.

I think it is very helpful to read of other parents' experiences with their children.
(Autistic or not!)

And it is heartening and reassuring to know that we are not alone, in trying to overcome some of the challenges that life provides us all.

I certainly find it just as challenging with my 10yr old(non autistic) daughter,albeit in a different way, to my 6 yr old autistic son.

Wouldn't change either of them though.

Hmmmm .. Well Maybe.. I do wish that my daughter didn't quite have such a bad temper! LOL!

Kathy said...

That makes three!

Mark walked at 15 months too, and couldn't sit up unaided till he was 10 months old..

Megan Bayliss said...

What a lovely blog. This is another mother of a child with Aspergers who wants you to come back to the computer soon.
Some days are desperate, some days are gold.

mcewen said...

Since my daughter walked [nay! climbed at 9 months] I was delighted when the next one wasn't so fast paced. Hindsight, what a gift.

mcewen said...

Neither - just scarily familiar.
Best wishes and I hope the term [semester] is going smoothly.
Best wishes

mcewen said...

Neither, just scarily familiar.
Hope the term [semester] is going well.
Best wishes

Autism Blogs Directory