Sunday, October 3, 2010

Days Go By

It's been a month since I last posted anything, and I only just realised it.

In a month, we've been down with the flu and are just recovering, and been to a barrage of Little A's doctors - regular pediatrician for the flu, developmental pediatrician for a quarterly checkup, special ed doctor for psychoeducational assessment as recommended by his preschool directress and finally, evaluation by a speech pathologist.

We're now beginning the phase of increased therapy, which according to my reading is still far short of the 25-40 hours per week recommended period for intervention for children with autism. From just 2 hours per week of OT, he will now have an additional hour of Speech Therapy and close to 8 hours of home and school-based behavioural coaching/shadow teaching.

After Little A's parent-teacher conference in August, it was strongly recommended that we get him a shadow teacher (something I asked about last year but no one listened to me then) so that he could focus and attend more during class time to bring him up to the level of his age group in terms of social skills and learning.

The search for the shadow teacher, who will also do at-home behavioural coaching (something like ABA), took an entire month. The queue for a speech therapist's evaluation took several months. OT is going fine, but we've all noticed that after an initial marked improvement, Little A's progress seems to have plateaued. Add to this the fact that the clock is ticking and he only has until age 5 (6 at best) to maximize this period of super fast childhood brain development and here we have the urgent need for more intervention as soon as possible.

Since we live in a Third World country, the cost of all this comes out of our pockets. No state subsidies of any sort in our part of the world. Still, Big A and I have decided we will take out a loan if needed to pay for all this, because we only have 2 more years to help Little A catch up as quickly as he can. And these costs are staggering. Every treatment is billed on an hourly basis. Not per month, nor per semester. Per hour.

I am inundated with paper, lists upon lists, as we have plenty of home-based work to do with Little A and I'm trying to come up with a coherent across-the-board programme for the au pair and myself to execute on a daily basis. My mum, bless her, has enrolled in an Early Intervention course, auditing classes once a week at the university she taught at and got her Master's Degree from many years ago.

This is very much a group effort. They say it takes a village to raise a child, and we're now putting together Little A's power team. Wish us luck.


Peter S. said...

Good luck, Iya! I hope you do find highly qualified people to help Little A.

fantaghiro23 said...

Hey, Iya. I understand what you're going through. My daughter doesn't have a shadow teacher, but I do know that the other parents took quite a while to find one that suited them. And yes, sessions with speech therapists are hard to come by these days.

I also understand the fear of our children plateauing. When our devt. pedia told us last year that my daughter was plateauing, it was very bad news for me. Even if they say that the plateau occurs at a certain stage, I don't think any parent wants to hear that.

You know, even if it's hard, I think having children like ours gives our day more purpose. And I find that more exciting. From experience, too, I believe God is good. The therapies are never cheap, I know, but somehow, when we really need it, God finds a way to help us along.

I wish you, Little A, and your family all the best.

Stepford Mum said...

Thank you, Honey and Peter. Your good wishes mean a great deal to my family.

We are lucky to have the therapists we do, and even luckier that Little A is improving at whatever pace he feels is best. I agree, Honey, about these kids giving our lives more purpose, because I was feeling that very strongly a few weeks ago.

We've scored a huge breakthrough this week in finding both the shadow teacher and getting a weekly speech therapy slot not too far away from home, so that's another huge blessing right there.