Summer for Special Needs

I'm about to share a secret with you about summer for special needs kiddos and their parents - it's hard.

Summer conjures up beautiful pictures of carefree days in the yard, at the park, at the beach; playing baseball or taking summer school classes. Sleep in, stay up late, picnics, cook outs, suspending the rules in favor of those special summer moments.

The reality of summer with a special needs child is something different; at least it was for mine. In today's terms, Alex has an autism spectrum disorder, adhd, and generalized anxiety disorder. Let's go back to the 1990's and early 2000's. Autism was much less prevalent (4 in 10,000 was the CDC statistic in 1992) and unknown by the majority of people we encountered.  We were pioneers of a sort, paving the way for Alex wherever he went - there wasn't Miracle League baseball or Sensory Sundays at local museums or any of the things you can readily find today.

When I think back on Alex's childhood, I think about the things that we did that worked, and I also think about the young mom that I was. I wish I could tell that mom to trust herself and to be kind to herself.

I'd like to share a few of the things that I learned so that if this isn't your world you can maybe develop a little empathy for what families like ours go through but also, if it is your world, to tell you that I see you, I see your struggles and your triumphs.

Listen to your gut:

There are many more resources out there today than there were when we were raising Alex, so I didn't always have a lot to go on. The first three summers after Alex's diagnosis I took grad classes on working with kids with autism. I read a few books. Mostly, though, I tried to figure out how to live my life. I think that becoming knowledgeable and informed is crucial, but at the end of the day you have to synthesize all of that information for yourself and your child - you still have to trust your gut. I became a detective and the mystery I was trying to solve was Alex. One of the most profound things I learned early on was that all behaviors have communicative intent and when you're trying to replace a negative behavior and you don't figure out what that behavior is communicating, your child will replace it with something else, likely worse. I looked at everything Alex did and tried to figure out what he was telling me. Alex has major communication issues, but over time we've learned to communicate with each other using AAC, some spoken language, and developing shortcuts and an understanding that I can't quite articulate. When Alex was young, I had so much to learn. I learned to tell when Alex was overwhelmed, when he was happy, when he was frustrated. I had to gauge when I could push him to try new things, and when to back off. It was a lot of trial and error. I had to trust what I thought was right for Alex.

Routine is Your Friend:

Alex craved routine. I understood how important routine was when I realized that he used it as a tool to help manage his world. When you don't have language, which Alex didn't, you don't have that tool to help you understand and negotiate what's happening in your day. Routine helps take the place of that. I may not understand what you say to me, but I know what's supposed to happen next. The sameness of routine is comforting as well. Alex qualified for extended school year, which was a huge help. For at least part of the summer he still followed his normal morning routine, got on a bus, and went to school for a few hours. Throughout the summer, he got up and went to bed at the same time. That was not my design, it was what he did. Sitting out by the campfire at our friends' cottage with everyone, including all the other kids, our friends would ask, "where's Alex?" He was in bed because it was 9:00. It didn't matter to him that it wasn't dark yet and he could stay up by the fire. Being away from home was different enough for him - keeping his bedtime worked better for him. It also meant that we were the only ones awake at 6:00 am while everyone else was sleeping in. We'd take an early morning walk or an early swim. He didn't sleep in, and he couldn't be up by himself. (He still can't, at the age of 29. If Alex is awake, someone must be awake with him.) Alex still is a creature of routine. We just got back from taking him on vacation, and he was up every morning at 6:00 and in bed by 9:00.

Manage Expectations:

I think this is huge, not just for special needs parents, but for all parents. We just got back from a family trip to Disney (Alex loves it, and they make great accommodations) and I could give this advice to lots of parents there. Stop thinking about what your summer or your vacation "should" be. You have to learn to be realistic and brutally honest. I think I learned to manage expectations early on, but I often did so with angst. My husband is much better at living in the moment, so he was often the gentle (and sometimes not so gentle) nudge I needed.  I had to constantly think about how much Alex could do. If my goal was to try to develop a new skill or provide a new challenge, I had to think about the incremental steps to get there. When he was young, taking him to the movies on Saturday meant that I couldn't make any plans for Sunday because he would need that whole day to recover. The energy and effort he had to expend to go to a movie theatre was so great he couldn't do any more. Going to a family function meant that we had to have an escape plan - Alex could handle a few hours at best, but that was it. We had to plan ahead, would we all leave, would one of us take him and the other stay with Jess; we always had back ups. We had to learn that we couldn't do all the things, but if we were realistic about what we tried, we had a much better chance for success and for everyone to have a good time.

Divide and Conquer:

Alex and his sister had very different needs. Honestly, I get the fact that any time you have more than one child it all becomes a huge balancing act. We tried to balance Alex's needs with the family. One strategy that worked for us was to divide and conquer when it came to time with our kids. I think this has become more of a common thing today than it was when Jess and Alex were young, or maybe I just didn't know about it back then. I guess I pictured that having two children nineteen months apart meant that we would be able to do everything together. Clearly, that was unrealistic. We learned to designate what was family time, what was Alex time, and what was Jessica time. Jess would have opportunities on her own with one of us while the other was with Alex. Sometimes it meant that we got a caregiver for Alex so we could both do things with Jess. We started taking her away for a weekend, just the three of us, when she was six. We would visit museums slowly, instead of at what we had lovingly dubbed "Alex pace." We ate at restaurants that she wanted to go to that we knew he would not be able to do. She got to choose everything. It was a special time for her and for us, but it also made it easier to enjoy the things we did the four of us. When the four of use went to museum together, we knew that we had to follow Alex's lead.

Trust Yourself and Ask for Help: 

This one is more of a "do as I say and not as I do." I was not good at asking for help (I'm still not). Despite that, friends came forward in many ways, large and small. Looking back, I also think that they would have liked to help more if they had known what to do. Letting them know what Alex needed, what we needed, would have been helpful to them. One year, my brother and sister in law planned their son's birthday party at a pool, in part because they knew Alex would like it. We went to a friend's cottage with a group every summer for about ten years. Over time, certain activities got planned or adjusted in ways that accommodated Alex, without anything ever being said. I remember the year that they bought a new tube for pulling behind the boat that worked well for Alex, "I saw it and thought Alex would like it," my friend said. Alex friendly foods appeared at gatherings. Let people help you. They want to. The ones that won't aren't worth your time anyway.

There's No Such Thing as "Free Time," so Make a Plan:

Alex's needs meant no free time for his dad or me. That's not a complaint, just a reality that you don't experience if you don't have a child with Alex's needs. That freedom that happens when your child can get up on their own on Saturday morning and get a bowl of cereal while you sleep in - it never happened in our household. That freedom when your child can go over to play at a neighbor's house on their own - that never happened either. Alex has never had a moment in his life that wasn't orchestrated and supervised by someone else. In order to be able to do that fully, you have to find a way to make time for yourself. Alex's few hours of summer school for part of the summer meant I could drive Jessica to and from her own summer school classes, or clean the house, or do a few errands. When dad got home from work, it might be that I took a walk, or hid in the bedroom and read a book. I played with the kids while dad worked in the shop for a few hours. We got caregivers regularly and had date nights. It didn't really take a lot, but we had to have something.

No one has a perfect summer:

At the end of summer, I would inevitable think of all the things that we didn't do or didn't get to. There were moments when I gave in to the thought that I had blown the whole thing. Then I would remind myself that no one has a perfect summer. Thankfully, this was before social media was there to tell me that all of my friends were having a perfect summer or to tell me all the ways I was messing up as a parent. By the time the end of summer rolled around, we were all ready to get back to our routine. The kids and I were all ready for the new school year to begin.

I could let myself dwell on the fact that we couldn't go to Fourth of July fireworks because Alex wouldn't stay away that late and couldn't manage the waiting required when you get to the part two hours before fireworks start, or the summer classes he couldn't take, or the activities we left early because he was starting to have a melt down. Or I could think about the trips to swim in Lake Michigan, or day trips to my aunt's cottage, or getting ice cream at Dick's Drive In; trips to the pool, doing art projects at home, and watching endless hours of Disney's Sing Along Songs. Choose the focus on the memories of what you did do.

Have Fun:

You know what? Despite the challenges, actually probably because of them, I look back on my children's childhood fondly. I would do it all again, even with some of the crazy things that happened. We had fun. It's popular now to talk about the importance of "making memories." We didn't talk about it like that back in the day, we just did stuff. We have lots of great memories and family stories. I didn't get to be the mom lounging poolside with a book because I had to be right with Alex, but I did get to be the mom that went down the waterslide with him a million times while he was squealing with delight. Jess and I still laugh about the time we went to Door County for the day and every candy shop we went in, Alex pointed to white chocolate almond bark in the display case and we told him no, because we "knew" he wouldn't like it. After about three shops we finally gave in, and he ate it all, this kid who never tries new foods and had never, to our knowledge, even seen white chocolate almond bark before.

Be Kind to Yourself:

It has taken me until Alex's adulthood to allow myself to think that I did a good job as a mom when he was young. I doubted myself all the time. I was strong enough to not chase every fad out there (when it comes to autism - there are many). I looked for the science behind the things I tried and I trusted what intuitively made sense. I did the things that I knew I should, I just questioned myself every time. I can now say that not only did I do my best, I did a good job not just for Alex but for both my kids. I wish I could have let myself think that 25 years ago. It would have saved me a lot of sleepless nights.

Alex's loud vocalizations as we sat at the restaurant were evidence of how much he has learned to regulate himself, and also how much effort it takes for him to do things others might take for granted. I apologized to our server. "We were just at the Lion King at the PAC. He was quiet for two and a half hours, and he just can't be quiet anymore." She smiled warmly and laughed. "it's loud in here, no worries."

People often ask me how we know how Alex is feeling or what he's thinking. It's a fair question, one with an answer that is both complicated and uncomplicated. He doesn't speak, so it takes detective work on our part. At the same time, how do you know how your infant is feeling? How do you know your partner is upset or pleased with you without them saying a word? There's an old adage, "being unable to speak is not the same as having nothing to say." We're learned to pay attention.

Which brings me to the Lion King. A day like this was many years in the making. It is the culmination of years of work helping Alex with his many sensory issues and with self-regulation. Many therapists and teachers have helped him, and us, to learn how his brain and body work and what he needs. It involved intention and practice.

More than 10 years ago, I'm not sure exactly when, Alex attended his first traveling Broadway production. The show was Wicked, and he'd listened to the cast album dozens of times. This was the show we felt would be perfect to capture his attention, and we felt he was old enough and had acquired the skills to attend a performance. This was years before special sensory performances for people with autism on Broadway, and years before the kind of publicity that exists today to help the public be aware of individuals like Alex.

There is nothing spontaneous about taking Alex to the theatre, or about trying a brand new experience. That was even more true 10 or 20 years ago. We prepared for Wicked by continuing to listen to the cast album and talking about the upcoming trip to the theatre. We drove by the theatre. I contacted the theatre to find out about handicapped seating. (Accommodations for physical handicaps were much better understood than for so-called "invisible" disabilities.) I created a social story that we practiced for about a week before the event. A social story is basically a script, with text and photos, that helps someone rehearse for an event. The story described what Alex would be doing and contained photos from the show and photos of the theatre. We also learned over the years that preparation had to be early enough before an event, but not too early. Starting too early - more than a few days or a week - created anxiety as well. We got box seats. The movable chairs that are perfect if you are in a wheelchair so the chair can be removed are also perfect for Alex. If he rocks a bit, there is no one immediately around him that would be bothered. John and I can physically draw our chairs nearer to Alex to provide some comfort in proximity. We had an escape route to the bathroom planned. We had a bottle of water. (This was when they were just beginning to allow water in the theatre and before wine, snacks, and drinks of all kinds went in with people.) We brought noise -cancelling headphones, because Alex's hearing is so sensitive he can hear everything he needs to while wearing them. We were also prepared for the fact that all of this preparation might fail, and Alex would be unable to stay for the performance, that he would need to leave mid-way.  We tried to predict every aspect of that day for him.

That first trip to Wicked was a rousing success. Alex loved the show. John and I loved watching Alex love the show. It was the beginning of many trips to the theatre. Alex has seen Wicked multiple times, and one of the times through he even got to meet the actress who was playing Glinda and she gave him a backstage tour.

More than10 years of preparation went into our attendance at Lion King. Our entire day is orchestrated to help him have the internal resources he needs to enjoy the show. We brought him home for the weekend, so that we could have a quiet day leading up to the performance. Going to the PAC is now familiar to him, so there is no longer the need for a social story. We had been talking about the show for awhile, though, and the way he repeated "Lion King" indicated he understood what we were talking about. We watched a few YouTube videos of scenes from the musical just before leaving home for the theatre.

Now when we got to a show we have an established routine, which helps Alex (and all of us, I suppose) immensely. Once again, I experienced the joy of the performance, and the joy of watching Alex enjoy something that I love so much. He did an amazing job sitting still without rocking, and watching without vocalizing - two things he does to self-regulate. He watched intently, taking everything in. There is no doubt that he was enjoying everything about the show.

It was all quiet easy, really, or seemed easy. It was after the show when Alex showed us just how much effort it takes for him to do something like this. Once the performance ended and we got to the car, the vocalizations started. One way he self-regulates is by making vocalizations. If he is tired, sick, or anxious, they can be quite loud. He did not seem agitated in any way - his body language was not agitated - but he had to vocalize. He had to do some rocking as well. We went for food after the show, to a familiar restaurant where we knew he would be comfortable because going out to eat in itself is something he enjoys but that requires a lot of effort on his part. The contrast made it so clear to us that he used all the effort he could for the performance. It showed us how much he's learned and how much control he's gained.

At that point, he had done all he could. We apologized to the server, but at that point we knew Alex was going to have to do what he needed to do. Food helped (there was surely a bit of "hangry" going on, or as we call it with Alex, "hanxious") and within a couple of hours he was able to relax. The amount of time it takes him to regulate after a big event has decreased tremendously over the years as well. When he was little, going to a movie took a day or more to recover from. Now, going to the theatre took a couple of hours to re-regulate everything.

It really was a wonderful day. It made me glad that we've invested the effort over the years to give Alex these experiences, and it made me appreciate how far he's come. I can't wait to take him to his next show.