Tuesday, December 12, 2006

Second in a Series

After our initial relief at the neurologist's assurances, those nagging doubts began to creep back in. Is he OK? Is that normal?

At subsequent appointments with out pediatrician, we heard the familiar refrain. "He's really big. Let's keep an eye on that." It was just something we repeated at each visit, a scrawled notation in the chart.

When we took D. in for his 16-month checkup, the pediatrician asked, "Is he using any words yet?" We looked at each other, Mr. WG and I.

"Well, he signs 'more,'" I said.

"But does he say any words?"

"Um, no. Not really. But S. also didn't-"

He held up his hand. "I'll give you another two months," he said. "If he's not talking by then, we move forward with speech therapy."

I have mentioned that what I hate most about going through the experience of being D's mother - and let me clarify that I love D. with all my heart, and I love being his mother, except for the part that I hate about it - is that it forces me to confront the worst parts of myself.

I hated the therapy sessions so much.

I especially hated the intake sessions. For the uninitiated, that’s the session where the therapist shows up on the day the housekeeper invariably does not show up, looks around at the hovel you call home, brushes away the debris from the couch and sits down gingerly. She pulls out a clipboard and says, “So, tell me about D.” And then you start talking and crying and she pretends not to notice that you are sobbing or that you haven’t washed your hair in three days or that your other two children are fighting because one will not share her imaginary pizza with the other, and it’s just loads of fun all around.

I resented every minute of every session. In my defense, at one point, D. was getting 5 hours of therapy every week. Every day, I had people traipsing through my home, every day I had to be social with these people, smile, make conversation, banish my girls to the family room to watch television, wake D. from an ill-timed nap or rush him through a meal that started a few minutes late or coax him to stay awake just a little while longer.

Every. Damn. Day.

Anyway, the idea of speech therapy on top of what we were already doing really didn't thrill me, so I just sort of shoved the thought away. "He'll talk when he's ready," I said to anyone who asked. "I managed to do OK with my other two kids," I reminded them. "Why would we even bother with speech therapy?" I asked Mr. WG. "I mean, we don't like anything the girls have to say."

But eventually, shortly before D’s second birthday, I was forced to concede and take him in for a speech evaluation. And I did have to take him in – the speech therapists did not come to the house. So I bundled up my boy and hauled my pregnant self to the building, parked about 6 miles away, and then attempted to coax D. to walk. When that didn’t work, I hauled him up over my girth and waddled across the parking lot, up the stairs, and down the hall to the elevator.

Inside the elevator, D. reached for the red button repeatedly. He still does that. It’s really annoying.

We finally made it to the therapist’s office. I hated the therapist instantly. She just had this way about her, this air of condescension, this attitude, this bitchiness. Now, most therapists base an evaluation on what they see, of course, but they also note somewhere things reported by the parents. For example, if I told the physical therapist that D. climbed up on the dining room table, she wouldn’t encourage him to do so in her presence, but she would note in her report: “Mother reports that D. can climb onto the dining room table and does so regularly. Mother also reports that her other children run with scissors and play with knives. Referred family to CPS.

This therapist refused to include anything that she did not see firsthand. So at our first session, in a strange place, with a strange person, D. did not speak. He said maybe 3 words. And so her “evaluation” indicated profound disabilities. And I had to sit and listen to it for 45 minutes and then read the whole report when it came.

She handed him a dog. “The doggy wants to eat,” she said. D. looked at her. I looked at her. What the hell did she want from him? Turns out she wanted him to feed the dog some pretend food.

“Um, we don’t really play like that,” I said. “Give him a computer or a phone or a doll, even, and he’ll do all sorts of imitative play, but we don’t do dogs.”

“Well, he needs to. This is an important skill.”


The therapist also mentioned that she preferred to have the parents wait outside during the session. I ignored her. She repeated herself. I continued to ignore her. She conceded that I could stay until D. had a chance to get used to her. I explained that I would stay, period. I can’t be sure, but I think she rolled her eyes.

When I got her report, she had marked D’s expressive language at 12 months and his receptive language – that is, what he could understand – at 16 months. He was days away from his second birthday, and none of his other therapists had indicated such a drastic delay. To say I was devastated is like to say that I sometimes disagree with my father-in-law.

Mr. WG put it all in perspective fairly quickly, though. “She’s an idiot,” he announced, and there was to be no further discussion on the topic.


Still just me said...

No one ever knows your child like you do. We went through speech therapy for several years. My son decided he wasn't going to speak one single word until he was over 3 years old. Now that he is 16, I sometimes wish he would be quiet.

Anonymous said...

Dear lord I hate the whole "can you feed the stuffed teddy bear/dog" thing. Our speech therapist evaluator was actually pretty good and took into account things we said he did at home and was nice so I can't complain but the whole "the stuffed bear is hungry - can you feed the bear?" thing? No way. I mean, who does that???

This happened at our last evaluation too (not speech, just a general evaluation with a pediatric development specialist) - at one point, when he was playing with toy cars that he grabbed from a bag of toys that she gave him, the doctor leaned over with a tiny doll and a tiny bottle and asked LM to give the bottle to the baby. He looked at her as if she was crazy, as if to say "dude, I have cars here, you want me to play with some stupid doll? It doesn't have wheels!"

Anonymous said...

That therapist sounds horrible...it makes you wonder how she even keeps a job like that. I too hate people traipsing through my house. Of course our EI system is so lame that we only see them once a month but I hate it.

When you say the part you hate about being D's mother is that it makes you confront the worst parts of yourself...yes. Yes yes. You summed up so well what I've been struggling to understand.t

Anonymous said...

You have such a bad attitude!!! I have a six year old son who has SOTOS and I've been through hell and back with him, family members, therapists, medical doctors, and specialists but my attitude is completely different than what you have portrayed through your free lance writing. Your attitude sucks. I know it's not easy being a mom to a child with SOTOS but you need to change your outlook and look for the positive things your son does, verses the annoying things and things you hate! It really upset me reading your blog....

Ani Od Chai said...

With all due respect, Anonymous, if reading this blog causes you so much emotional distress, I have to wonder what state you live in. Denial, maybe? Also, dealing with a perfectly normal cookie-cutter child (if such a child exists - I am going on baby #6 and I assure you that none of mine are "normal")is challenging on a good day. The reality of life with a special-needs child sucks. It's an unfair hand that was dealt to you by G-d. If a Mom wants to vent all of her feelings, positive or negaitive, on a personal blog, who the hell are you to criticize her for her attitude? Did G-d appoint you judge and jury over what attitude is acceptable? By the way, I know WG in personal life, and sometimes I wonder how she has such a positive attitude.