I LOVE spring and summer! The extended daylight and the warm weather are not only amazing for the lovely health benefits (sunshine is proven to improve overall behavioral health AND improve circadian rhythm – talk to us more about this if you have a tough sleeper), but a whole new world opens up for our kiddos on the spectrum. There’s more to do when you can go outside, and being outside is often a huge hit. Gross motor activity is excellent for sensory input and, let’s face it, it’s nice to let our kids run around a playground for a while so we can soak up some sunshine.
This particular quarter of the year tends to also mean an increase in social events – cookouts, outdoor parties, zoo trips, waterparks, carnivals… you name it. This is a time when we all get to climb out of our hibernation and do fun things together.
As a parent of a child with autism, I understand that this is kind of a bittersweet period of time. Yes, we love that our kids get to go out and we have more opportunities to take them places. We also have way more to worry about than an average parent. We don’t have the luxury of packing up the car and winging it. We have to plan more, prepare more and we have more “what ifs” to worry about. Sometimes, we have so many things to worry about that we have to consider whether or not we should even go.
For example, when my son was 4 years old, he was completely non-verbal. He was highly sensitive to loud sounds and often did not enjoy places that were overly crowded. He had an extremely limited diet due to oral motor deficiencies, for which he was in feeding therapy. He was incredibly sensitive to heat, often breaking out in hives if out in the sun too long. He enjoyed water, but could not swim. He was not fully potty trained.
Let’s take even just these characteristics and apply them to going to a local pool. I watched friends with neurotypical kids breeze to a local pool without a care in the world. They packed a bag with sunscreen and towels, picked up McDonald’s on the way, and the kids ate happily in the car on the way to the pool – where they played and barely needed to run back to their parents for anything. In fact, if they couldn’t locate their parents or something went wrong, they could easily explain to any adult that they needed help, what their parents’ names were, and what they were wearing.
If I wanted to do the same thing with my child, I’d have to run through an endless preparation list that looked SOMETHING like this:
- I need to feed my son before we left because McDonald’s doesn’t exactly have a happy meal for a child on a feeding plan.
- I need sunscreen for sensitive skin, I also needed to make sure we had swim shirts and hats. Maybe I should even bring a portable fan in case he starts to overheat.
- I need to scope out the area to find a place where we could park our belongings. No one would be sitting with them, I’d have to stick to my son like white on rice. It would also have to be someplace somewhat disconnected from the chaos of the pool in case he got overstimulated
- I need to be prepared to leave, even if we were only there five minutes. If that was all he could handle, that would be all we could do that day.
- I need to make sure we had headphones in case the restrooms had hand dryers (which would trigger a meltdown)
- I have to mentally and emotionally prepare myself – if a meltdown did occur, I would have to prepare myself to ignore stares from other parents who assumed my son was just in a tantrum from not getting his way.
- I need to follow him closely, because not only could he not communicate to another adult that he had lost me, nor could he tell them my name or anything about me – but it was unlikely that he would notice that I wasn’t close by.
This is not an exhaustive list. This is the tip of the iceberg. You can see why sometimes it’s so much easier to fill up a kiddie pool in the fenced back yard at home. Easier? Yes. Isolating? Definitely. Best for my son? Not really.
The message I want to put out there for this topic is two-fold:
I want parents of children on the spectrum to feel empowered with taking their kids out to these social activities even though it’s way more demanding than it is rewarding sometimes, and I want people who support these parents to understand what is required of the parents in order to be helpful and not make assumptions about them.
Parents, I get it.
I have been there. Trust me! I have gone to cookouts with enough supplies to justify going on a week’s trip to a third-world country. It looked like we planned to go through some kind of shipwreck and end up stranded on an island. Not only did I have an embarrassing amount of things with me, I have had this amount of preparation with the full understanding that we may only be able to attend the cookout for 5 minutes. I went with the mantra in my mind that we would try – we would give it our best effort and we would ignore stares and less-than-helpful suggestions from other attendees.Even if we go and my child has to have on headphones and access to the iPad, we would go. Even if we go and my child ate a cut-up peanut butter and jelly sandwich with a fork while everyone else ate burgers and hotdogs. Even if we go and every single other kid is playing games while my child sits in a quiet corner lining up the solo cups he found.
The point is – we would go.
I’ve done trick-or-treating where we’ve only made it to three houses. I’ve done family gatherings where he needed to find a quiet room to rock in after only a few minutes of interaction. I’ve done playground trips where all he wanted to do was slip woodchips through the grates of the steps on the playground equipment. I would pick him up, guide him to go down the slide with me and praise him for trying it a few times, but then let him go right back to his woodchips.
It doesn’t seem like the summer fun outing that you have pictured, but it’s doing a lot more than you realize. Because, over time, your child learns to enjoy these activities.
Here’s what most people who are typically developing don’t realize – almost every experience takes a learned history to be fun. You didn’t know a diving board is going to be a blast until that first jump into the cool water.
You did not know a burger was delicious until you took that first bite!
You were sure how awesome it is to bury something into the sand until someone shows you how to do it.
And if you’re someone who doesn’t learn through observation, it takes so much longer to learn these things.
My son probably didn’t know the slide was going to be such a neat sensory experience until I picked him up and slid down it with him a few times. Now it’s one of his favorite things to do (even if there are woodchips). He didn’t know that playing games with his cousins would be so entertaining until I diligently exposed him to it time and time again. It took years, but each time we went, I saw him open up just a little bit more.
It’s worth it to go. Even if it is only for a few minutes. Go without expectation of what you want it to look like – because that might be a few visits down the road. Go with the expectation that it’s going to be an ENORMOUS win if it goes even just a little better than the last time.
Friends of parents, be empathetically actionable.
If you have a friend or a family member who has a child on the spectrum, be encouraging without demand. Invite your friends to your events without taking it personally if it’s going to be a little too much to ask for them to come. Let them know that they’re welcome! Even better–let them know that they’re welcome to come in any shape or form they’re in.
Let Them Know:
- That it’s okay to come for 5 minutes and leave without explanation!
- That it’s alright to come even if their child has had a marathon of a meltdown that day.
- No one is going to care if their child participates in games or not– you’d just be happy to have them there and support them with whatever they need.
- Let them know that if their child does have a meltdown while they’re there, no one is going to think twice.
Ultimately, that they’re accepted for who they are.
Most importantly, find ways that you can help take some of the weight off the parent’s shoulders. Here are some ideas to best go about that:
- Ask if there’s any food that you can provide that the child will like so the parent won’t have to pack as much ahead of time
- Have a room that the child can go into to deescalate if needed
- Ask the parent if the child might be interested in certain activities and then ensure that there is space for them (if you have games that have certain materials the child will like, set aside some just for that child)
- Coach up some of the older kids at the party to hang out with the kiddo on the spectrum so the parent can have a few minutes to relax and chat with other adults
- Have the TV in the living room available with some of the child’s favorite shows in case playing outside is overstimulating
Making simple preparations to be helpful not only demonstrates your love and support for the parent, but also the child. You show that you want them to be there and are willing to be sensitive to the child’s needs to make it happen.
So here are the main takeaways from this – the TL;DR, if you will:
- DO THE THINGS. Who cares what it looks like? Who cares how long you’re there? You set the rules – normal is boring
- Let your child experience the activity in whatever way is enjoyable to them. No one tells you how to appreciate a sunset – you do it however you like. Your job is to show them new things, their job is to process them and make the memories.
- Can’t nobody tell you nothing! If advice givers are well-meaning but have bad input, put your hypothetical headphones on. Remember that you live this day in and day out. YOU are the expert of your child. People have opinions, you can’t control that. But you can control what you let past your surface level and into your conscious thought. Take in that which is loving and supportive, and let the rest just be sticks and stones.
- Think big picture. What may not seem worth it now might be SO worth it later on. Maybe your child only wants to put woodchips into the grates today, but that three or four times you got him to go down the slide might turn into something huge by the next time you take him to the playground. Unfortunately, we don’t have a crystal ball to see what today’s actions are going to do for tomorrow. Do them anyway. Do them without expectation and be proud that you did. It’s not easy to do things that don’t have immediate positive outcomes – celebrate them and celebrate yourself.
Friends of Parents:
- SUPPORT. Don’t just send out the invitation, be actionable with it. What can you do to encourage your parent friends that you are creating an environment of acceptance?
- Don’t push. If they can’t make it, leave the door open (as Bruno Mars might say). Count them in the RSVP, have space, but understand that a parent of a child on the spectrum may need to live moment to moment. They could very well be on their way and need to turn around. That’s okay! Save them a plate and plan to connect with them later on.
- Think of ways to be openly inclusive. Have games that can be adapted so that the child on the spectrum can play in a way that is easy and enjoyable for them.
- If you don’t know, ask. Ask what you can do to make it an enjoyable experience for parent and child.