I Want to Outlive My Child (And 3 Other Horrible Truths About Being a Special Needs Parent)

05/22/2015 05:09 pm ET | Updated May 22, 2016

We all know the brave, strong, inspiring images of parents of kids with significant special needs who wear their challenges like a suit of armor. I have been that parent sometimes. I have also been the parent who is crying so hard that I can't speak because I don't know what to do. There are also several dark truths that we all feel, but mostly don't discuss.

1. I want to outlive my child.

We live in fear of what will happen to our son or daughter when we die. Where will they live? Will anyone care for them like we have? I know there are excellent group homes out there and I know that I can't afford any of them. I know there are compassionate, wonderful people who work in state-funded homes, but I don't know how to find them. These are thoughts that steal sleep or wake me in the middle of the night.

2. Most of us dread summer.

The majority of special needs kids need routine like the rest of us need air. School provides the structure these kids need and the break or daycare the parents need. It is an awful misrepresentation to call school daycare, but it's a harsh reality most of us face because after middle school, it is exceedingly difficult to find a daycare that will accept our child. Some states have excellent summer school programs. In most, however, there is so little funding for special needs summer school that the slots go to those who are close friends with Harry Potter.

I am fortunate to be able to stay home full-time with my son, Caleb, but it makes summer drag out like endless loops of fishing wire. The first month of summer we usually search for routine with lots of swimming (which results in several ear infections), lots of visits to the library, maybe a movie or two and my feeble attempts to emulate the educational models Caleb's teacher flawlessly presents every day. At some point in those four weeks, Caleb begs out of these activities. He wants to be at school with his teachers and his friends. Their routine trumps anything I could even attempt.

By the time school resumes, I am weakened and depressed from the toll of long summer days. Caleb's health issues make summer even more challenging, because he can't regulate his body temperature and will die if he gets too hot. Summer camps are usually not an option for him because of his specific temperature needs. Aside from swimming, we are restricted indoors and that takes a toll on both of us.

3. Worse than summer, we dread the day our child turns 21.

Federal law requires that students with disabilities can attend public school until the year in which they turn 21. It is amazing that education is extended for these students, but it ends there. After age 21, parents are left scrambling to find programs for their young adults. I have visited several day programs that mimic school for young adults. Some are really structured and provide wonderful outlets for young adults with special needs. These are usually the ones that cost the most, excluding many of the people who need these programs. Some of these programs provide services for a few hours a day, not a full day, which leaves parents who work with untenable choices.

Because our kids are mentally much younger than age 21, many of us are reluctant to start the search for a group home until we are physically unable to care for our child. At a time when our friends are either enjoying or dreading an empty nest, we are left with no choices.

4. We often have to take away our child's rights to make their own decisions.

When our special needs child reaches age 18, many of us have to file for guardianship. This is a complicated process which involves attorneys (and their fees), court appearances and letters from doctors. The premise is that because the child is chronologically an adult, they have the right to refuse medical treatment, including things like an ambulance ride, necessary medications or surgeries. An ambulance could show up at the front door and if the young adult doesn't want to get on it, the ambulance drivers have to respect their wishes, unless guardianship is in place and the parent can demand that the young adult be treated.

Guardianship may be necessary, but it is one of the hardest things I have ever had to do for Caleb. It boils down to petitioning the court to acknowledge that he is an incapacitated person. It is effectively taking away his right to make his own decisions, and that is a very sad process. I walked out of court the day guardianship was final with my head down and my heart heavy.
I believe these are universal unspoken truths for special needs parents. They weigh us down even when we're not thinking of them. So, if you see one of us on a good day and we still seem a bit down, it's because the future looms like a black cloud that fills the whole sky. We all want the best for our kids and many of us fear we may not be able to provide it.

These are ugly, frightening thoughts. I spent the majority of Caleb's childhood trying to avoid them and the guilt they impose. As time does, it has brought these issues to the surface, which requires action. I have a blog called and it was born out of these ideas. My son will always be Peter Pan, a child in an adult's body. I find us living in Neverland without much guidance. I am leaning heavily on my friends with older kids, listening to what they have learned and watching what they do. I hope by the time Caleb is 21 that I will be able to help the parents coming along behind us.