All parents want to protect their children. We are constantly on guard, looking for potential threats. Parenting a child with special needs often requires an extra measure of caution, because problems can hide in the most innocent of places. Where some parents see fun and merriment, we may only see danger, potential meltdowns, or sensory overload.
An experience we had many years ago on a family vacation comes to mind as an analogy. My husband and I took our two small sons to the beach and it was a lot more work than we expected, partly because our toddler and preschooler had distinctly different sensory needs at that stage. My oldest child spent most of his time avoiding the sand and crying “Dirty, dirty…” under his breath. My youngest, on the other hand, couldn’t get enough of the sand. He would sit and eat it by the handfuls.
After a while I was exhausted and decided it was time for “easy.” We headed to what I thought would be a safe haven: the baby pool at the beach club. After a few minutes of play I stepped on something squishy at the bottom of the pool. I picked it up, and to my horror realized I was holding a jellyfish. A JELLYFISH. In the BABY POOL! A man saw my reaction and said nonchalantly, “Oh yeah. my kid was playing with that. It doesn’t have any tentacles!” I was appalled. Why would anyone take a risk like that with the safety of small children? Not to mention the fact that a baby pool doesn’t need any extra organic material, if you know what I’m saying. Not wanting to take that man’s word for it that no one could get stung, I disposed of the jellyfish. It was a wake-up call to me that there was something potentially dangerous in an environment that should be protected.
As my children got older, and my youngest son was diagnosed with an Autism Spectrum Disorder, I realized that the world is full of “jellyfish in the baby pool,” so to speak. Other parents of children with special needs know what I am talking about. Experiences that may be perfectly safe or enjoyable for typical children can be dangerous or overwhelming for a child who is physically or neurologically different.
Dinner out as a family? Lots of ways you could get stung by jellyfish. Taking your kids with you grocery shopping? Jellyfish. Public school? Jellyfish. Amusement parks? Jellyfish. Trick or Treating? Jellyfish. Dentist appointments? Jellyfish. Enjoying the latest Disney movie at the theater? Jellyfish. Haircuts? Jellyfish. Playing outside with other children? Jellyfish. Easter egg hunts? Have mercy. (If your child can get through the waiting for the start of the hunt then you sure as heck better have some emergency eggs stashed in your pockets just in case the hunt itself doesn’t go well.) Chuck E. Cheese? Actually, never mind that last one. I’m pretty sure all parents feel the same way about that place.
Parents of typical children may look at the majority of that list and scoff, “All kids struggle with those things from time to time.” And they do. But when you have a child with special needs it can escalate that struggle to a whole new level of complicated. I’m speaking not only for myself, but also for the many friends I have seen lovingly protect their special-needs children over the years. Let me be clear that that my son has a more Asperger’s type of Autism. His challenges are different than children who may be more severely affected, but he still has challenges. When he was younger he actually displayed the signs of classic autism, including self-injurious behavior and the inability to speak. It was a frightening, exhausting time. We stayed home a lot because we didn’t want to risk a public meltdown or losing him in a crowd.
One of the times I DID attempt to go out alone with my two young children ended up being one of the most frightening days of my life. We were at a “Mommy & Me” event at the mall (no small feat for me), and I glanced away for literally a second while I tended to my oldest child. I looked up and discovered that my youngest, who was around 2 and had been standing right next to me, was GONE. There was a large crowd so it was hard to see where he might have headed. My friends split up and security began to look for him as I frantically searched and fretted. The five minutes that he was away from me felt like an eternity. He was found headed OUT the doors to a parking lot that was on a major road. I shudder to think of what could have happened to him!
If you are wondering how I managed to be irresponsible enough to lose track of my son, let me explain some things to you. Crowds of people can be difficult for any parent to navigate, but even more so when your child has sensory issues or cognitive delays. Many of our children do not have a proper understanding of danger, and elopement is common. They may run away because they get distracted, or even because they are overwhelmed by the crowd and need to get away. And quite often they are also FAST! That is one reason why many parents resort to using a harness, especially when the child is active and refuses to ride in a stroller. If you see a parent who has a child in a harness I would say to you: don’t judge. You don’t know why they need it. If you see a family walk out of a handicapped spot in the parking lot, don’t assume they are abusing the system. Some states allow placards for cognitive issues, in part because parking lots can be very dangerous for someone with impaired judgement. These are all ways that parents of children with special needs have found to avoid the “jellyfish”. If you see a family eating together at a restaurant but the children are playing with electronics, don’t mutter under your breath about the lack of attention they are giving one another. Allowing electronics may be the only way that some exhausted parents can be able to have a family meal together in public. Those distractions allow them AND their fellow patrons to eat in peace. We hope. Sometimes, despite our best planning, problems happen. As I have written before, if you see a child having what looks like a temper tantrum, don’t roll your eyes and assume that noise is simply a brat with a permissive parent. It could be that the child is experiencing a meltdown due to sensory overload and the parent is simply doing the best they can. Parents of children with special needs can not, and should not, stay at home all the time. We parents do our best to try and ensure smooth sailing when we venture out, but sometimes things happen. We shouldn’t have to hide our child who is “different.” The world should be more accepting and patient, and less judgmental.
When my boys were younger I still did a lot of NOT going out because it was too hard for me to deal with the chaos and the judgment. Friends used to invite me to the free or $1 movies that theaters offer for families in the summer. I would have loved to go and help pass the long summer days, but I knew that a situation like that was FULL of jellyfish. First there was the waiting in line and getting there early enough to ensure a seat. Then there was the waiting IN the seat for the movie to begin. There there was the sitting in the seat during the movie, while being inundated with flashing lights and loud sounds. I didn’t attempt one of those “summer movies” until my youngest son was 7. My iPhone kept him entertained while we waited for the movie, but once it started he spent most of the time kicking the seat in front of him or asking “How much longer?”
By the way, those friends that I turned down for the movies and other outings? Eventually they stopped asking, and I felt more exhausted and isolated than ever. Which makes me even more grateful for our friends and family who “get it”. It makes swimming in the baby pool SO much easier when I know there are other people who are helping me look for jellyfish, or helping set my son up for success. For example, our favorite hairstylist for the boys has a limited schedule, plus she seems to be everyone else’s favorite as well. Sometimes we would show up and find that she had a lobby full of people waiting to get a haircut. When I explained how difficult it can be for my son to wait for extended periods of time she gave me her personal phone number so I could check in with her when we were on the way. Recently she has started fitting us in 30 minutes before the shop opens, partly because she is already there doing busy work anyway. It was a huge relief, and my boys don’t look like sheepdogs as often because it is so much easier to get them haircuts now. I never expected her to make accommodations for us, but I am touched by her kindness and immensely grateful.
It is so incredible when those friends who “get it” see potential problems and offer solutions that didn’t even occur to me! My children participated in Destination Imagination when they were in 2nd and 3rd grade, and competed in a local tournament. My youngest started off the day doing pretty well, but the competition day was LONG. I had done a lot of pre-planning and strategizing, then spent the whole time trying to avoid “jellyfish.” Unfortunately my youngest son’s competition was in the afternoon, when he would naturally be more tired and overwhelmed. His older brother competed mid-morning, but had to be there quite early. I sent my husband ahead with my oldest son’s team and stayed home as long as possible with the youngest. It was almost an hour away so I hated to bring two cars, but I knew that it was the only way we could make it work. Taking two cars and having an “exit strategy” is common practice for families affected by special needs. We arrived mid-morning, just in time to see his big brother compete (they eventually advanced to the Global Finals, by the way. Great job, team!). We then had some down time, and I had brought books and electronics, but it was loud, busy, and crowded. As the competition for my youngest son neared we saw that he had begun to unravel. He was stimming, sensory-seeking, and distracted. His team gathered in a classroom for a final rehearsal and it was a struggle to get him to focus. The mother of one of his team-mates observed his behavior and realized that one of the reasons for his distraction was because there was so many new things to look at on the walls. She knew that he would be equally distracted when we entered the competition room, and made the decision on her own that she wanted to help. She approached the Monitors and asked them if my son and I could be permitted to enter the competition room early, before the rest of the team, so that he could become acclimated to his surroundings. They were initially surprised at the request, but understood its validity, and said yes. I was so moved that my friend had cared enough to help us like that, and I was also surprised that I hadn’t come up with the idea first! Sometimes we are so exhausted from trying to survive that we need those people around us who “get it.” This mom and her daughter have always been in our corner, and we feel blessed to know them.
The experience at DI reminded me to not be afraid to ask for what you need. Sometimes it takes some creative thinking to make certain situations work. As I have written before, I do not expect individuals and business to accommodate us, but I have been known to ask for special arrangements if possible. I try ensure that my request is not unreasonable and would not be a burden. I find that people are quite often willing to help us if I give them a simple explanation of my family’s situation. I figure it can’t hurt to ask, and usually end my request with, “If it is too much of an inconvenience I understand, but I thought I would check into the possibility. Any help you could give me would be greatly appreciated.” In “Trains! And Kindness!” I wrote about an incredible experience we had at a model train display, when folks went out of their way to help us out. Looking at pictures from that day still bring a tear to my eye.
Our day at the DI tournament also reminded me of the importance of knowing our limits and not putting my son in a situation where he is doomed to fail. I instead try to set him up to succeed. My youngest is able to use the regular bus, but that is partly because his ride is less than ten minutes long. If it was longer I would have more concerns, because a big moving tube full of boisterous children is a problem waiting to happen, especially when the only adult must be more focused on driving than supervising. Our wait at the bus stop every the morning was awful, however, especially when it arrives late. My son has a lot of energy in the morning and he would spend the time at the bus stop darting in and out of everyone’s yards. He would also engage in sensory-seeking behavior like physically bouncing off other people’s bodies. I got tired of having to apologize to our neighbors for his invasion of their personal space. I also got tired of making scenes and felt like the “mean mommy” every time I loudly scolded him from across the street, “Get out of that yard!” It didn’t help that not one of the parents at the bus stop seemed to be a morning person, and there was a lot of awkward NOT talking to each other. I began to look for a way to remove him (and me) from that situation, and sometimes I drove him to school. Then one day I realized that I could see the school bus through my back window as it turned down the street behind ours. Now we stay home until I know the bus is nearby, and that choice alone has greatly reduced the early morning stress level in our household. Except this morning, when I must have blinked and missed it and my kids were frantically running to try and get to the bus stop in time. They didn’t, but handled it really well and I drove them.
Sometimes people don’t understand why we avoid certain situations. Snide comments have been made about me always “insisting on my own way” when I am cautious or particular in planning events. They think that I am simply being inflexible, I think I simply know what my son needs! (Okay, SOMETIMES it really is just me wanting my own way, I admit. Sometimes.) I have been accused of babying him or even over-pathologizing. People have looked at my son and said, “He looks fine to me!” But they don’t know what our life is like at home, or what goes on behind the scenes. The reality is that it has taken a lot of work to get him to the point where he “looks fine.” It continues to take a lot of work to ensure that he is not placed in situations where he would be doomed to fail. We instead try to give him the setting and the tools that he needs in order to succeed. We constantly try to walk the fine line between protecting and empowering him.
We have come a long way since my boys were little, but some days I am still exhausted. Trying to avoid all those jellyfish is hark work! I try not to think about all the things that we missed over the years, and try to take it in stride when Autism steals some of the joys of childhood from us. I focus instead on our blessings, on how much we have learned, and the amazing people we have met along the way. Yet no matter how hard I try, sometimes I still feel the sting. Sometimes I just. want. NORMAL. Most days, though, I just go with it, because I have a family that I love. This is our “normal,” and we are happy. Besides, what is normal, anyway? I prefer life to be not boring. Seriously.