special needs parenting · The Year of Turning Eighteen series

The Year of Turning Eighteen (part 1)

Alex with his brand new braces

Next week Alex turns 17. In preparation, we have signed onto the legal plan with Mike’s employer, and are making big plans.

Why all the hullabaloo?

Because when a person turns 18, they are legally an adult and responsible for all of their own legal decisions. That includes financial, medical, educational, and everything else. When that person has an intellectual disability, the ability to make those decisions is different, meaning that we need to determine if and what type of a a safety net should be in place.

Alex can read at about a fourth grade level. He can do elementary math and use a calculator. His emotional development is also at an elementary stage, meaning that his impulse control, long-term planning, and ability to make decisions about housing, medical needs and even grocery shopping is about that of an average fourth grader. In Michigan he can attend school until he is 26-years-old, though we are not sure if he will attend for that long, he is still nowhere near high school graduation. We still have great opportunity to maximize all of those skills in school. Realistically, he will probably always need guidance for things like informed medical consent and legal decisions. To give a glimpse of what this looks like, Alex recently got braces. His orthodontist explained the process thoroughly, and we reinforced the explanations. When trying to eat dinner the first night with braces, Alex’s teeth were too painful to chew. His solution to the problem was to remove the braces. He knew that the orthodontist would have to do that, but he wanted to return first thing the next morning and be done with the whole ordeal. If he had legal decision making capacity and transportation, I have no doubt that he would have been on the doorstep of the orthodontist well before the office opened the next morning. While I don’t blame him and we all have those feelings, it’s also important to keep Alex safe from his immature decision making process.

Then there’s the obvious issue that he cannot drive.

Thus, before he turns 18, in 372 days, we must have a safety net in place. That safety net is in the form of either Power of Attorney or guardianship. We presently lean towards Power of Attorney for Alex, which gives him greater control and autonomy to him, but the decision is not yet final.

The first step is to get his full educational evaluation completed, which is in process. From there we contact an attorney who participates with our legal benefits and get guidance on the best way to move forward for all of us.

My hope is that by documenting our process we can help other families navigate, so this is where it begins.

running · special needs parenting · Uncategorized

Off to the races 

We were watching BattleFrog Races on TV this weekend, and Alex exclaimed that he wanted to do a race like that.  That’s a lofty goal, to be sure, but I took him seriously, actually, I might have swooned a bit, but I took his comment to heart. I don’t know if he will actually get to do a BattleFrog race, but consider the goal set, and we’re working toward it, and fully intend to find a fun race and participate with him.

We normally exercise daily, I do my own workout and take Alex for a bike ride, a walk, or out to play frisbee or football, but today we kicked it up a notch and I made him run.  He didn’t like it.

It would be so easy to acquiese.  He has low muscle tone after all, and loose joints, and running is hard for him.  But that’s the point.  It’s hard.  He wants to do an obstacle race, which will be hard, so he has to train, which is hard.

I made him run, he didn’t like it. I let him walk, he still complained. Then I realized that every runner has to start somewhere, and that usually means intervals of walking.

We walk/ran about 5/6 of the distance and I challenged him to a race home. He stuck his fingers in his ears, taunting me, and took off. He beat me home. I couldn’t have been more pleased.

After Alex beat me home. 

It seems that one of my biggest challenges as a special needs parent is discerning if my kids are just being normal kids; trying to perceive if the limitations I sense are legitimate or not. So often I find that things I could allow to be barriers for him are simply him trying to get away with less effort than I want from him.  If he beat me home, it means he was entirely capable of everything I asked of him. 

An entirely normal behavior for any child.

I so often see parents of kids with disabilities working so hard with their young children in early intervention and preschool, just to allow those same children right off the hook as they get older and set in their ways. I, too, have been susceptible to that same tendency, when therapy is done mostly at school and kids get older, I have neglected pushing toward new milestones. Yet as Alex grows up, I am daily more aware of his need for independence, and in order for him to be as independent as possible, he needs to have life experiences. If I let him stay inside his comfort zone, without challenging him to dream big and work hard I am standing in the way of his autonomy and limiting him.

And it’s really hard not to do that.

So we ran, and we’ll run again and again, because independence matters, and this one step in that direction matters.