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.


Reflections on Development From 13 Years in

My son Alex was born with Down syndrome. We nearly lost him at birth, so it didn’t take us long to get perspective on the Down syndrome diagnosis because, after all, we had our baby. Down syndrome seemed like a piece of cake next to grieving a lost child, so we moved forward, easily wrapping our minds around his bonus chromosome. 
Within days after he came home from the hospital an OT with Early Intervention called us, made and appointment, and set up services. She introduced us to many simple things we could do to optimize his development. I giddily glommed onto the exercises, I had a golden ticket, and as long as I jumped through all the right hoops my child would become high functioning. 
You’d be hard pressed to find a more dedicated therapy mom. I daily fulfilled my exercise duties, and added in infant massage and baby signs for good measure. By all accounts Alex blossomed. He walked at about 19 months of age, learned signs and words, and his progress became a feather in my maternal cap. I was proud of him and pleased with myself. 
I kept track of all things developmental, counting his vocabulary at 100 words by the age of 3, and many milestones near target. Then a few months later, when he started school, it all changed. He regressed, and struggled in all areas. I redoubled my efforts, determined to rebound from the setback I had deemed temporary, but it didn’t happen quite that way. 
Alex resumed steady development after interventions outside of school and a classroom change, but he never became that high functioning person I had set my mind on. 
Alex has significant sensory challenges and apraxia, and now, at the age of 13, he is right on the border between mild and moderate cognitive impairment.  
You might think I’m disappointed about that.
You would be wrong. 
While I don’t regret being diligent to maximize the potential of my child, I no longer do so with the myopic approach of ensuring that he falls into a category that seems more desirable. You see, Alex is a phenomenal person. He’s compassionate and empathic, he always asks me about my day, he has rich friendships with numerous students at his school. He has a sense of humor and an athletic prowess, as well as resilience and determination.  
Alex is more than his IQ or a random measure like high functioning. He is a multi-faceted person who drinks in life, and contributes to this world. Over these years I have settled into a less frenzied perspective on development. Now I savor and enjoy each stage rather than rushing through it toward an ever elusive goal. I delight in my children where they are while pursuing their best interests and therapies. I enjoy Alex more now, without concerning myself with qualifications like high functioning. 

Before a recent choir concert, proud of his suit. 

A poster and gift from a girl from school. 

Sporting the mow hawk haircut he insisted on.