autism · Down syndrome · special needs parenting

How Summer Changes When You Have Kids With High Needs

Summer break isn’t my favorite.

I used to love it. We had a camper and several times each summer our family would visit different parks around the state, enjoying nature and time together. It was idyllic, and this, or something similar is what summer means to many families.

If I had to choose just one word for what has changed, that word would be vigilance.

Our son, Ben, has high needs. Yes, he has Down syndrome, but so does Alex, there’s a difference. Add in autism, with some hefty medical and psychiatric diagnoses, and time with him requires constant vigilance. Like bringing super busy and fearless two-year-old twins to the Grand Canyon overlook without a rail kind of vigilance. And that is just outside at our home, when we go anywhere else our efforts are multiplied.

This is why:

  1. Our child doesn’t have discernment. He occupies a twelve-year-old body, but his mind is much like that of a toddler. Dangers like busy roads, campfires and water mean nothing to him, and we have no way to explain it to him.
  2. He doesn’t learn from experience. Family members have been flummoxed to see him run into the water until it’s over his head, then stand there until someone rescues him. After coming out coughing and hacking, he will turn around and do it again. And again. And again. He will even laugh while doing it because he gets attention for it. He has yet to grow out of it, and I have my doubts that he will. Any time spent near anything dangerous is similar.
  3. He doesn’t respond to punishment of any sort. Neither in school nor at home. We have yet to find a way to create a consequence for his actions which discourages him from doing the same in the future, and that is with social workers and psychologists using their best tools. (No, this isn’t an invitation for you to share your idea with us).
  4. He melts down. Too much stimulation, too many “no’s” or transitions, or just any change of setting are triggers for meltdowns. Anyone with a toddler knows what it looks like, flopping on the floor, screaming, kicking, hitting, biting and more, with murderous rage. But this is a twelve-year-old. He weighs about 100 pounds now, and he isn’t getting any smaller.
  5. He has discovered that taking his clothes off gets a reaction, and he loves reactions. Any time spent in public is taking the risk of public nudity.
  6. It’s a break from the structure and routine that keeps him together. School is a setting with professionals who work with him on these and many other things. He craves the predictability, and reproducing it at home doesn’t and won’t work, and goes against the fluidity that makes summer fun for the other kids.

We aren’t alone either. You may not see them, chances are they are holed up at home being selective about going out, but there are many families like ours, struggling just to visit the lake for an hour, or stop at the ice cream store for a cone on a hot evening. We know we need to get our kids into the community, but we do it judiciously, because so often it ends in frustrated exhaustion and tears. We live this year-round, but during the school year, our children have the structure and stability of professionals during the day, and we meet them refreshed and ready in the evening. Those with school during the summer have less of it, and the free time feels chaotic to them, and their families both.

Why do I bother with telling you this?

Because not very many people will. We left church, one with a special needs ministry because our son’s behavior and medical needs were too much for the volunteers. We no longer attend the special needs family camp we tried, because his needs were too much for the volunteers. We are the outsiders, the resources there are don’t fit for us, and we struggle alone. And I think it needs to be said.

 

Down syndrome · parenting · special needs parenting

Making Peace With Our Question Mark

When you have a child, they say your heart walks around outside your body, and I couldn’t agree more. All of the hopes and dreams of another person somehow mean as much to me as my own ever have.

We tend to think we will know what parenthood looks like going in. It starts with midnight feeds and changing diapers and blossoms into milestones. Before you know it there’s an independent human being making decisions and taking on the world. Supposedly, if you do a halfway decent job of it, the child becomes successful and lives a good life. But the reality is seldom so cut and dried.

When you have a baby with a developmental disability, you get advance notice that children don’t come with a recipe, guaranteed to come out as expected as long as you follow the directions properly. You know how it’s supposed to go: play sports, do well in school, go to a good college, find a wonderful spouse and enter a great career. Ensure good values and belief system of your leaning. Stick a toothpick in it to ensure it’s baked through and voila!

The recipe is punctuated with random question marks, some more than others, but we don’t understand them, don’t like them, and do our best to ignore them or stomp them into the ground.

Our son Alex is 16 now (hokey Pete, how did that happen?) and we aren’t sure if or how or when college or trade school will happen. He has career aspirations, and we work together with his school team to make step by step goals towards them. He is thoughtful and tender hearted, so we hope for him to find true love. Independence is still millions of baby steps away, and not a clear picture yet.

The recipe card most people cling to is the length of a novel for us, with many revisions and impromptu modifications. Our question marks are neither random nor infrequent. They started immediately and they’re everywhere. Early on we looked question marks straight in the eyes, then made it a full partner in the effort instead of something we try to avoid or ignore. We embrace the questions because we recognize that nothing is given or assumed for anyone, but especially so when parenting children who are not neurotypical.

Once you acknowledge the question mark, you can make peace with it, not only on behalf of your child, but in general. There’s a certain comfort in saying aloud that results are not always proportional to the effort and plans , no matter how brilliantly derived, unravel here and there. Once it’s on the table, the question mark isn’t so terrifying anymore, and it frees you up to focus on the process without clinging so desperately to results.

In so doing we find the magic in the process. And oh boy do we know about magic around here.