I could claim that I haven't had time to go to the book store, that too many other things have been going on. But I apparently didn't place a high priority on learning about autism.
Yes, I was in denial. I didn't want to believe that my son has autism.
When the county evaluated JF at age 37 months last summer, I could accept the numbers:
- Visual Motor Imitation ------- 42 months
- Cognitive Verbal/Preverbal -- 35 months
- Gross Motor ----------------- 31 months
- Fine Motor ------------------ 26 months
- Receptive Language --------- 20 months
- Expressive Language -------- Less than 12 months
These numbers fit with what we had observed, what we had been worrying about for months. JF could sing songs recognizably, and recite several entire Dr. Seuss books, but was not otherwise talking much. He had lots of memorized phrases, like "Where's Daddy?" Technically these were sentences, but there seemed to be something missing. When he wanted something, he would say, "More?" We would ask, "More what?" He would start to get upset and plead, "More?"
When I met other kids his age, they would approach me and say creative things like, "Barbie is getting ready for a party." Or "Look what I built with blocks!" Or "I'm gonna be Spiderman for Halloween." JF would never have said anything like that.
But I still didn't want to believe that he might have autism. In my mind, autism meant completely blocking out the world, unreachable. JF smiles, laughs, and gives hugs. It can't be autism.
It's not that I was worried about the label. I grew up with teasing for being short, and I beleive that it made me a better person. Not that being short is the same as being autistic, but none of us are perfect. I never expected my son to be perfect. The label would give JF the public services that he needs.
At the next family gathering, I told my dad and siblings that JF has a developmental delay, will start attending PEP, and might have autism. Brother1 crankily refused to accept that JF has developmental delay and started badmouthing the people who evaluated him. I asked him, "Why are YOU angry?!!" (Keep in mind that I have other issues with Brother1.) What right does HE have to be angry about JF's evaluation? That's MY prerogative.
After that, when I spoke to people about JF's language and other delays, I used the term developmental delay, avoiding the term autism.
The problem is that we don't have a definite diagnosis. If a doctor or other professional told me, "Your son definitely has autism" I would be able to accept it and move on. I guess I need to ask his PEP teacher and/or his pediatrician whether/when/how we could get a definite diagnosis.
Is it okay to switch subjects in a blog post?
Last Friday, per the pediatrician's instructions, we dropped down from two doses of Pulmicort per day to one dose per day.
Then we had a busy weekend. On Saturday, JF went to a birthday party for a three-year-old girl, then visited two other households (aunts and uncles and cousins, oh my!). On Monday the 15th, JF's daycare was closed for Martin Luther King Jr.'s birthday. It was my turn to take time off work to stay home with him. So I took JF to a Milkshake concert (www.milkshakemusic.com).
By Monday evening, JF had a fever, 101.3. Is it because we dropped a dose of Pulmicort, or we visited too many places, or both? Or neither?
Since he was 10 months old, he has had a fever or some other illness at least once a month. At one point, he hit 105.9 degrees Fahrenheit. This scared us more than anything ever has. We have since then discovered that he has allergies to trees, molds, dust, and cat, and that he has asthma. So now we have ways to deal with his frequent illnesses. But he is apparently still getting sick once a month, and we worry that he will spike a fever faster than we can deal with it.
So AF stayed home with him all day yesterday. Last night, I brought my laptop home from work so that I could try to work at home while taking care of JF all day today. I don't know why I thought it would be a good idea. It's hard enough to balance work and home, without trying to do it at the SAME TIME!
Every time I started to make progress on my work, JF needed me. Actually, I'm quite proud of myself for paying attention to JF as well as I did. He peed on the potty five times today and had only two accidents. I offered him many things to eat, and he ate a few bites of bagel, crackers, applesauce, raisins, and lots of water. Now I'm exhausted.
When AF came home, I called it a day and started exploring blogs. I always start with DDM's blog, because that's the one that introduced me to blogging. (I found her blog because I Googled "developmental delay" and "chiari" wondering whether my ACM1 might explain JF's delay.) Then I read blogs written by the people who comment on her blog. (I get the impression that it's impolite to read a blog without commenting, but sometimes I just don't know what to say.) My point is that some of the blogs I read tonight helped to put things into perspective, such as The Journey.
Reading these blogs is better than any support group. It reassures me that I'm not alone.
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