Having a child with significant developmental delays presents parents with situations that feel like they are in bizarro-world.
We are facing one in the next few days. We will be learning T’s IQ score.
I’m hoping that it is under 70 = Significantly impaired cognitive functioning = Mental retardation.
Dear God in Heaven, in what world does a mother hope that her son has an IQ score that means he is mentally retarded?
Through no fault of his own - or ours - our son very well may need government programs such as Medicaid Disability, Medicaid Waivers and SSI in order to live when he gets older and we can no longer have him on Rob’s health insurance and when we dead and gone. How is eligibility determined for these programs? IQ scores. Yes, there are other assessments & profiles that are done, but the ultimate screening tool: IQ score.
We’ve never allowed an IQ test to be done on T until now. It is not a valid measure of his future capabilities. No standardized test that requires a child with autism to sit for testing which is administered by a stranger is going to capture what that child is capable of. They are at a significant disadvantage before they even start. It requires social interaction and that is one of the hallmarks of this disorder: significant challenges in interacting with other people and understanding social situations. We knew that the number would be nothing but painful, it might lower expectations of professionals working with him, and at the time we didn’t need it for services, so we outright refused to allow anyone to attempt it.
He’s 10 now. Major changes are coming to our state’s Medicaid Waiver programs. If all goes as planned, the 13 year (yes, 13 year) waiting list for services will be eliminated in the next 5 years. That means that after 6 ½ years on the waiting list, he may be targeted soon.
We also know that most of his classmates & peers have IQs in the 40-50 range. Some of those kids are more verbal than T, are able to have conversations and are doing grade-level math. We don’t have conversations, although he can answer questions. And he has just started math and can do simple addition problems which is another miraculous moment for us, but it is nowhere near what a typically developing 10 year old can do. So if they are at 40-50, I can only guess where T will score.
So it is likely that he will have a very, very low score. So I’m not too worried…but…if he scores too high on this test, he may not qualify for any of those government programs. And while I believe that T is just beginning to show us what he’s capable of, I also believe that he will require these programs. I HOPE, dear God I pray that he will be capable of having a real job that pays him a living wage, that he will be able to live independently and do his grocery shopping and understand the concept of money and pay his bills and cook food and drive…why else have we withdrawn him from the public schools and have found the “Cadillac of Care” for him with this ABA program, so he can reach his maximum potential? And yet, I also know that I cannot count on those dreams. I may be part dreamer, but you also have to be pragmatic when you have a child with significant disabilities. If he tests too high, he won’t qualify for the very programs that very well may be the only access he would have to health insurance and income.
We’ve done all the financial pre-planning. We have a special needs trust set up for him so he will not be forced to live a life of poverty when we are gone. But Waiver services and Medicaid Disability? He will need those. And in order to get them, his IQ has to be below 70.
This is one of those “This really sucks” moments.