Remembering the Day of the Diagnosis

When my daughter was diagnosed with a profound bilateral hearing loss (110 decibal loss in each ear), I was relieved. Ok, let me back up.

I had been observing her peculiar behaviors for months. I had three in diapers (she is a twin). Because of my past work finding jobs for handicapped adults, I was familiar with deafness. I wasn't completely sure it was a hearing loss we were dealing with.

She made noises that sounded like Mama, Dada, etc.. but her eyes were so wide open in all the photos I took. In hindsight, I knew she was "hearing" with her eyes - trying to see behind her.
She played apart from the boys (I thought it was becasue they kept stealing her pacifyer). She constantly rubbed the tablecloth and drapes across her cheeks (she was seeking stimulation).

My fear was that she was autistic or mildly retarded. I was relieved it was just hearing. I thought we could deal with that. Every disability has its hardships, and nothing worth fighting for is easy.

Be of courage!

And Still Another

Yes, her twin has Tourette Syndrome. He was a head banger as an infant. He used to hit his head so hard against the crib railing, it would shake the whole house. My husband the physician, would say that he would stop if it hurt him. It was hard for me to believe that. he would rock and bang his head against the wall or in his car seat. He was labeled with a tic disorder.

As a toddler, his eyes started rolling to the bank of his head. That was pretty unnerving! He did this constatnly and would blink hard almost to try and control it. By the time he entered kindergarten, he would start with the eyes, but the shoulder would twitch also. By the time he entered first grade, his whole body would convulse, and I was afraid he was going to have a seizure. We finally made it in to see a different specialist who did the whole round of tests and concluded he had Tourette's.

I am fixing to home school him this year (8th grade).

The Deaf One

Yes, I have a deaf child,too. She is the girl I prayed to conceive for years. We didn't realize she was deaf until she was 16 months old, and since her birth predated mandatory hearing screanings performed on newborns, that was considered early in our state.

We managed to make some progress with hearing aids and had much resistance from the school district when she was reaching kindergarten age. We begged them to allow her to continue with the special services preschool for another year (especially since her birthday is Aug 29th!). They refused. We spent months and thousands of dollars fighting for some allowances but weretold they suspected she might not be smart enough to learn to talk.

Our school district had nver taught a deaf child to talk. She was, and is, part of the hearing world. We ended up sending her to another state to a specialized school for 3 years (the last year we maintained an apartment), but a week before she turned five, we left her in a dorm.

Moms Know

I have to say my husband was not supportive at all. Fortunately, he has made an about turn, but, back then, when I needed answers, he refused to believe there was anything wrong with our son. The boy was tested and diagnosed at three and a half. Asperger Syndrome. A real name to a real condition. My husband and I went to the national convention. He cried and refused to go back after first day. He said they were talking about him as a child. Asperger Syndrome. Gee, who knew.

Start Early, My Friends

Asperger Syndrome is a form of autism. My son was diagnosed at three and a half, but I had become concerned long before then. I have to say, however, he was my happiest baby out of my four. When he was two, I tried placing him in a day care three days a week, so I could tend to my twin newborns. He didn’t last two weeks. The teachers confirmed my suspicians. He was aggressive, had trouble expressing his frustrations. He wouldn’t nap. He wouldn’t make eye contact. He repeated everything over and over. Finally, someone saw what I saw.

Don't Let the Hand Get in the Way

He started writing camp this morning. I signed him up for the summer course at the high school to help him with his writing inhibitions. He was not a happy camper. When he was younger, he could not stand handling a pencil. The very act of putting pencil to paper was just too painful for him. It will always be an issue although, when we home-schooled, he could shout, sing or record his answers, and that worked out great! The ability to think off the cuff will always challenge him. No medicine for four years, National Honor Society member, first chair in tuba, and he has three friends. We are fortunate. So, off he goes to camp, my fighter.

Rejoice for Three Friends

June 1, 2008 (from my diary)

My son had his 16th birthday party yesterday. He invited all the people he knew; three came. Thank God, he has three friends! My son has Asperger Syndrome. He was diagnosed at three and a half years old against the wishes of my husband who blamed me for being a refrigerator mom and making a mountain out of a molehill. I knew if I wanted to love my son, I had to understand him. And in those early days, as we entered into the trenches of autism spectrum disorders, I knew in my heart of hearts, something was deeply wrong.