THE BLOG

The Summertime Sadness of Living With a Child With Special Needs

06/25/2015 02:10 pm ET | Updated Jun 25, 2016

Today I just need to rant. But first, many thanks to the ethereal Lana Del Ray for giving me today's title.

I've written before about the cumulative effects of taking care of a person with special needs. If we count in the time I cared for Sophie as a baby, I have been wiping bottoms, brushing teeth and reading bed time stories for 20 years. I'm tired.

Summer is absolutely awful for us. Aside from the lack of school structure, Caleb will die if he overheats. Because he can't regulate his body temperature properly, his body goes into overdrive when it's hot out and this process exhausts him. This summer has been hotter than normal and it means we are stuck inside. Errands like grocery shopping or even a haircut wipe Caleb out.

With the extreme heat, we need to keep our house at 67 degrees (I can't even begin to think about this month's electric bill -- I see lots of Kraft mac and cheese in our future). I arrived at this number after a few weeks of experimenting with other temperatures. Anything higher makes the indoor temperature too warm for Caleb. This number can only hold if every blind and curtain is drawn. It's so dark and dreary it feels like we are living in the Addams Family's house.

In Philippians 4:11, the Apostle Paul wrote about learning to be content in all situations. He wrote this as an innocent man in prison, so I'm thinking if he can do that, so can I. I am making a conscious effort to be content, but it is really, really hard. This morning, as I was driving Caleb to the pool, I was actively thanking God for all of the blessings in my life. The fog of summertime sadness (AKA seasonal affective disorder, just not the usual kind) was just beginning to lift.

Let me back up a second here. Crowds in a pool are generally not good for Caleb and me. When he was young, a child who just didn't know any better asked Caleb if he was Frankenstein because of his large open-heart surgery scar. One time, teenage boys starting throwing a ball at Caleb's head. Caleb's unusually high voice and autism mannerisms like hand flapping cause many curious glances.

I've heard people who think I can't hear them asking what is wrong with him. All of these situations are painful so we go to the community pool at 8:30 AM before it officially opens at 10:00 so we can have it to ourselves (don't worry, Caleb swims well, he's taller than the deepest part of the pool, there are two phones at the pool, and I was a lifeguard in my younger years).

Okay, so we get to the pool today. I was getting in some exercise and Caleb was happily floating in the shady part of the deep end. He instinctively knows the sun hurts him so he always seeks out shade. We have been staying for about an hour each trip and Caleb leaves the pool so happy that it carries him through the rest of the day.

Then it happened. A woman showed up with four young girls (I'm guessing they were around age 8). They looked our way, which was fine. Except Caleb yelled out in his distinctive voice, "Hi!" Caleb is the most social person I've ever met on the autism spectrum. I gave a small wave. But not one of these five people said hi or waved back. I'm probably reading too much into it, but 18 years of experience makes me think that they heard his odd voice, knew he was different and, like so many people, act like Caleb's challenges are contagious so they avoid him completely.

I don't know what made me think this, but I somehow knew that the woman was going to use the exercise room that is adjacent to the pool. It's behind glass walls. And I knew she was going to let those girls swim while she was so far away. I both envy and resent people who let their kids swim unattended or climb rock walls or play on playgrounds. None of those are options for us because Caleb needs constant, unwavering watching. The few times I have ever taken my eyes off of Caleb for one literal minute, he has broken his wrist, fallen and broken the braces off of his teeth or fallen on concrete and landed on his forehead. However, as a former lifeguard, I can't turn off my instinct to watch everyone in a pool.

The woman said to the group of young girls, "You stay in the shallow end so I can see you." I'm fairly certain she wasn't implying that I should watch them, but it did seem irresponsible to me that she would leave them basically unattended in a pool. It's happened before, at therapy sessions or other pool times where people just assume any other adult will keep an eye on their kid. I can't take my eyes off Caleb so this wasn't going to happen. Further, without an adult monitoring the kids, the kids were more likely to say something to Caleb or start laughing and pointing.

So we left.

Life at home is very difficult in the summer. I was on the phone with one of my best friends yesterday and Caleb came down four times asking if he could have the car brochure that he was holding for his birthday. This happens an average of about 123 times a day. It's maddening, but I need to say, in my calmest voice, that he already owns the thing he is holding in his hand.

Another question he asks multiple times during the day is if his regular rubber ducks would be sad if he got a new rubber duck. I have to tell him, repeatedly, that yes, they would be upset. If I absentmindedly say we can get a new one, he lets me know this was the wrong answer and the whole process starts over. Failure to give the correct answer spikes the poor kid's anxiety so the questions are quadrupled.

I adore my son. I've always said that if he had to be born with so many challenges that I am beyond grateful that I get to be his mom. I do my best to keep his life happy and calm and as predictable as possible because that lessens the anxiety that rules his world.

I was really trying to be content today. The one positive thing we had going for us today was that time in the pool, and it was cut in half. Now we're back in our oddly dark home and I'm on deck for endless questioning.

So here's my question for everyone reading this: what do you do to find contentment when it's as difficult as trying to finish a dream that you woke up in the middle of?