I flip through my Instagram early in the morning before everyone’s awake. I can’t help but feel jealous of the pictures I see. One after another it seems — perfect families, gearing up for perfect summers, with their perfect children. Yes, I know they’re not “perfect.” Everyone has their flaws and shortcomings. But from my vantage point, and the uphill climb I have every day with my child with special needs, everybody else’s situation around me looks … perfect.
The more I see these photos, the more I start to dread summer break with my child. There are three days left of the school year and then I step back into my prison cell. I know that sounds extreme, maybe even a little harsh. But when you’re raising a child with a major special need, like fetal alcohol spectrum disorder (FASD), extended time at home with them feels like that. It’s not that I don’t love my child, it’s just … downtime never produces anything good. He needs activity, structure, and consistency. While summer break brings lots of the first, it’s not so great with those second two! Therefore, I dread it. The weekends at home during the school year already gave me a glimpse of what’s to come — meltdown, boredom, and really bad choices.
Guilt upon guilt.
I used to feel guilty for thinking and feeling like this. I would keep my thoughts to myself, not sharing them at all. “I need to suck it up and put on a happy face about summer,” I would tell myself. I even went so far as to convince myself that things would be different each time. And then they weren’t. Often, they were worse. Eventually my hopefulness gave way to full-blown dread. I hated it. But I couldn’t escape it. In my mind I pictured the meltdowns, outbursts, violent tirades that surely were to come, and shiver. I didn’t want to face it and I didn’t want my other children to have to walk through it either.
Plus, this was my son I was talking about. I love my son. A parent shouldn’t dread spending time with their own child, should they? But that’s exactly what I wrestled with. We had so many times of peace, but the meltdowns and outbursts cast a dark shadow over them. Love and dread were locked in hand-to-hand combat from mid-April to the end of May.
Was there any way through this?
Facing the elephant in the room.
After years of feeling like this, we started to take action earlier on, before the summer arrived. We realized that our lack of planning was leading to a lack of structure, which led to a full-on collapse once summer arrived. Here’s what we did, and what you can do too …
1. Google as many camps as possible.
We literally sat down in late April and began to Google the heck out of camps in our area for our children to attend. Fact is, they all need structure to some degree. Our oldest son needs extreme structure, all the time, every day. But our other children can surely benefit from it as well. Our Google search produced lots of results. We compiled a list and began to check out each one.
2. Put your child in as many camps as possible.
Once we compiled the list, we began to register them. The good news is that many were lower cost or free. That’s what you need to look for. We know how cash-strapped families like ours can be. In the age of the Internet, you can find lots of good options at a low cost. Vacation bible school (VBS) programs at churches are a dime a dozen, and they are really good.
3. Structure each day.
If camps or VBS programs are out of the question and it’s homebound for you, be as structured as possible. Plan your entire day — from sunup to sundown, wake-up time to bedtime. The truth is, none of us really do well with downtime. Boredom sets in on any of us, special needs or not. A structured day helps us all, and it makes the day go faster.
4. Stop feeling guilty.
Seriously, stop it! I know why you feel guilty, but you need to let it go. It’s never easy to feel an emotion like dread over something that’s supposed to be happy and good. But the reality is, your child and mine are not like other children. He or she has a special need that causes behaviors that are out of your control. And, he or she needs structure. With children who have FASD, it’s not just important, it’s a must. They need structure. They need consistency.
Our son will immediately jump to saying, “You just want to get rid of me all summer,” when he finds out about all of the camps and events he’s going to. That always heaps the guilt on, but I’ve realized something: we’re doing this to help him. We’re registering for these camps because we know how difficult downtime is for him. That’s why he thrives during the school year, when he consistently goes to school and follows a structured routine.
Recently we sat down with him and shared our plan for the summer. We walked him through each camp he was going to and shared that we were doing this for his own good. “Buddy, you know that you need routine and consistency. You know that downtime equals bad outcomes for you. These camps are structured but also a lot of fun. You’ll love them,” we shared.
He agreed with us. At 13 years old, he has become keenly aware of his disorder and what it can produce for him if he’s in a situation that lacks structure.
It’s taken years for us to stop feeling guilty over dreading summer break, or Christmas or spring break for that matter. But facing our child’s special need head on has helped us. We’re committed to doing whatever we need to do to make sure that he has a good summer break.More On