Thursday, January 24, 2013

Ending Early Intervention

As A approaches her sixth birthday (late this year), we are beginning to contemplate her next steps.  Most programming in many jurisdictions end around age six, and although Ontario's IBI program does not have to end at age six, there is a lot of pressure from regional providers to put children into school once they are school age.

When A was younger, I never used to want to say "she will not recover" because I did not want to limit her potential.  As we approach school entry, however, I can now write that and not cringe.  She has made so many gains in the past three years, but looking at her developmental trajectory, she will always be behind her peers, particularly in regards to communication, social skills, and academics.  I do not think she will be independent and I think I am okay saying that.  I still believe she would adapt well to assisted living, perhaps not requiring a group home, but living with some supports.

So now, like so many parents before me, lies the crucial question.  What next?  What now?

If past experience is any indicator, A can learn, but not observationally.  She needs everything explicitly taught in a very systematic, step-by-step manner.  Series of steps need to be chained together and a task analysis performed for anything beyond one step.  Teaching her this way is doable, but it requires the teacher to have special training in ABA techniques.

A's community school has 500 students, 300 between ages 4 and 7.  There are at least six children with ASD at the school.  There is a high ESL population.  There are other exceptionalities at the school.  There are four education assistants (EAs).

I suppose an IPRC for A and T would increase this amount of EAs... it may, or it may not.  There are no guarantees of them having any knowledge of autism or ABA.  There are no guarantees those principles will be used.  Since A has very limited speech, there is no way I will really know what is going on at school.  Although I would be less worried about T, he is just now beginning to tell us some of what he does in pre-school.

What to do?

Do I abandon A to the school system and begin saving money for her dependent future?  Or do I continue to invest in teaching her skills, in the hopes she will have more options in her adulthood?  She will not be completely independent, but the more skills she has, the more options she will have... and we can rest easy knowing we did our best to prepare her for the rest of her life.

Some children with autism learn so slowly, this may be an easier decision.  Parents may know that learning will be slow, understand school is "something to do", and can save for the inevitable supports their child will need as an adult.  Some do so well with IBI they can actually benefit from general education.

Then there is A, and many like her, in between.  They do not learn fast enough to function in general education, but not so slowly a parent can feel stopping all real learning makes any sense. 

Many parents have counselled me to be open to "inclusion" - even if A is at a JK level academically, that being in a grade one class makes sense.  She will be invited to birthday parties.  Kids will say hello to her.  She'll have "friends" in school.

These are all nice things.

Will it make any difference at age 21 when she is finished school, and all of her friends in grade one are off to university?  I wish A could tell me.  If she said, "I want to go to school with everyone else", this decision would be so much easier.  But she can't tell me, and I know she will get frustrated in general education, yet not pushed or challenged enough in special education.

What to do?

Socializing kids with autism is important, but I am not sure school is the place to do it.  Developmentally, as our kids age, they are further behind their peers every year, especially socially.  Some kids with autism are not as delayed, and so can benefit from the peer interaction.  But when the gulf becomes wide - an eight year old functioning like a three year old, the "peer" interaction no longer makes sense.  The social interactions of eight year olds are well beyond a three year old, unless adapted by the eight year old.  

I think children with autism can be socialized outside school in community activities, such as camps, community service clubs, and leisure activities, as well as programs intended for people with special needs.  

I think school is for learning.

What to do?

You'll have to wait to find out.  But there is a plan.