Down syndrome · special needs parenting

A Heartfelt Letter To The Neonatologist Who Told Us Our Son Has Down Syndrome

Dear Doctor,

I don’t remember your name, or even your face. The one and only time we met was one hell of a night. I doubt you remember us; it’s been 17 years.

We had nearly lost our baby and were in the midst of an emergency C-section required for fetal distress. Our baby had been resuscitated, and once stable, you brought him to us. I don’t know how much you knew about what had transpired, but I doubt it was your first experience with such a delicate situation.

I was eager to see my baby, a boy, and you showed him to me, introducing us for our first face-to-face meeting. You showed me that he was breathing well, even though he still needed an oxygen mask, and you showed us his sweet fingers and toes to count. I know you needed to whisk him away to give him further care, but the extra moments you gave us were so sweet. You then pointed to his eyes, his small head, his ears, and you told us how sweet those features were. You suggested, ever so gently, that those features looked to you like he could have Down syndrome, and that you would like to order tests. You explained that it would take a week to find out for sure, and told us you wished that wasn’t so, because waiting is so hard. You let us kiss him again, and told us what a wonderful, miraculous baby he was before rushing off with him.

I didn’t know it at the time, but what you did was unusual. You blessed us with your demeanor and words. You reassured us that our baby would be okay, and that he was entirely precious, no matter what the test results showed. You gently ushered us into a whole new world, and you did it perfectly. Thank you for your words, and thank you for your support.
Alex does have Down syndrome. The events of that night made it easier for us to wrap our minds around that. Having nearly lost our baby, seeing him alive with Down syndrome seemed like an easy reality to adjust to. But your kindness, your introduction of him to us as a baby first, set us up for acceptance. I wish I could see you one more time and tell you to your face how blessed we were to have you there with us that night. I hope that somehow you know.

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.