Saturday, May 05, 2012

IQ Test

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.

Hence, bizzaro-world.

This is one of those “This really sucks” moments.

Wednesday, May 02, 2012

Decision made - update from last summer

I had a hysterectomy last summer. It was something I knew was going to have to happen for a number of years – it was just a matter of time, and I knew that. The issue was that I was waiting for the doctor to tell me that it absolutely had to be done, but she wouldn’t, year after year. In fact, the first year I went to see her, we were still seriously considering having another baby. Our question at the time was whether or not I was physically able to, with the prolapse I was experiencing. Yes, I could do it, and every year all test results came back normal – just that the first delivery and then gravity had done their work and were continuing to do so. So January 2011, my doc did say that if I wanted to have the hysterectomy, it had progressed enough that it was a reasonable thing to consider. Still could have a baby, but time was running out either way (I was 42).

So darn it, I had to decide for myself. No one was going to make the decision for me. Are we going to try again, with all the unknowns? Take the risk – many of them? (My health, a future baby’s health & development…)

Here’s the thing: I really had to accept the fact that we can’t control any of this. Ultimately, we are not in control. I kind of hate that. I couldn’t control whether or not this next child would also have special needs – due to genetics or my age. No control over that. I couldn’t control if my body really could handle it. And what about any further complications?

As I contemplated all of this, still seriously wishing I could have control, I also finally greeted the thought that had been tap-tapping in my head for a while, growing louder as the years have gone on since T’s birth. I really was not inspired to have another baby.

This could not have come as more of surprise to me, especially if I had said this to my 28 year old self as Rob & I were walking down the aisle. Minimum 3, probably 4 kids. That was the plan. Then life happened.

So I settled in with this thought for a while. I don’t want to have another baby. It was a new acquaintance, this thought, but it also felt like an old friend right away. Comfortable, you know?

Did I chicken out and take the safe way? Some may think so, but I’m the one that made the decision so I’m the only one that knows truly. The answer is that I did not. To chicken out would have been to give in to expectations and what other people wanted for me and for us as a family. And I love that so many people wanted us to have more because that tells me that those people think we would have been good parents to more than one. I take that as a real and humbling compliment. But the truth was that I did not want to do it again. I chose to embrace the really lovely life that Rob, Thomas and I have. Life is good. We are happy & content and have built a really nice life around ourselves here, surrounded by dedicated and loving friends and professionals that have joined us for the journey. Nearly a year later, I remain happy that I decided to have the surgery.

Are there times that pull at my heart? Yes. Not long ago, a beloved 18 month old daughter of some dear friends of ours ran back to our house when it was time for them to go to their car. She probably was just trying to escape and not leave yet, but regardless of the motivation, she held up her arms while sobbing and ran toward me. I scooped her up and she stopped crying immediately, snuggling in to my body while sucking her thumb. It was beautiful. This simple, everyday experience has been denied to me because of Autism. This never happened for me as a mom of a toddler. In fact, he never even cried or even seemed to notice when Rob or I would leave him with a babysitter. Parenting has been different for us.

But as my minister said to me as I was contemplating this decision, there is more than one way to parent in this world. There is more than one way to make a difference in the lives of children around us. So we will be sublime parents to the amazing child we have, and find other ways to parent the children in our lives. I am content and at peace with this.

Thursday, April 12, 2012

He’s going to show me. I can’t really plan his future for him.

Today, as I watched T scale an enormous indoor cantilevered climbing structure, I slowly came to the realization that I am not the most capable person to be planning his future. Okay, I may be the second, or third, but I watched him climb and climb in amazement and realized that he just did something that I really thought he didn’t want to do. I thought he wouldn’t do it. I didn’t think he couldn’t do it – I just thought he wouldn’t. This was based on observations I’ve made about his willingness to try other similar adventures. Even with several other children climbing around him, he waited his turn, got out of the way when appropriate, didn’t push any other kids…just climbed and smiled and climbed and smiled, all the way to the very tip top.
He started at the bottom, sat on the first curved plank, then moved toward the second only to back away when another kid came near. This went on for a good 10 minutes, and is not unusual behavior. Rob & I gave him the “5 more minutes” heads-up, and to our surprise within a minute he was on his way up. We watched, wide-eyed, then stepped back and observed how he would do. Would he eventually freeze when he realized that the web of rope was all that would keep him from falling 10, 20, 30 feet, then more? Would he push another kid? How long would it take me to get to him?
I set the fears aside the best I could, and then said quietly, “Fly baby, fly.” As I watched him figure out a tight spot, maneuvering around obstacles and outwardly smiling and enjoying himself, it dawned on me that he was proving my protective assumptions wrong. He was doing it, and confidently, too. I’d like to say again that I didn’t think he couldn’t do it – I really thought he would refuse to, or it would just be too overwhelming with the other kids or too scary when it got really high. And yet, all those things did not get in the way today. He wanted to climb, so he watched other kids and HE DID IT.
So we’re down on ground level, watching in reverent awe of our kid, and the thought came to me that I really, truly can’t make any firm plans for this kid. He surprises me nearly every day. Is he autistic? Absolutely yes. But in the last year he has learned to read words, write them, transcribe them, type on the computer, do simple math worksheets…he is blowing me away. So I can’t make any assumptions about what his capabilities will be, or what limitations he will have. I will have to take it week by week, month by month, and let his abilities guide me. I can’t assume that he will never live independently, nor can I assume he will. This is tough for a planner! But honestly, we’ve already been in what feels like unchartered territory with him for years, so this really is not much different. Dr. S says that he’s not on the high end of functioning, nor on the low end – he doesn’t fit either place. “He’s just…Thomas,” Dr. S. said.
Isn’t that the truth?