Special Needs Summer Reality – Autism Parenting Magazine

The reality of navigating summer with special needs can be complicated. One mom reflects on her struggle with the classic summer dream.

The children’s laughter flying through the summer breeze, the smell of cookouts, the crusty, salted, sandy skin from a day on the beach- all the senses activated like a symphony of sounds.

The dream

This is the quintessential summer picture the mind believes in, the carefree sense of endless sunlight, no clocks, eating whenever you want, staying up late with s’mores, and ice cream trucks each day.

If I try to hold onto this picture, it makes my reality hurt even more. That’s the problem with expectations, no matter if they are grand and lofty or small and inconsequential; if your reality doesn’t meet them at your front doorstep, it leaves you feeling even worse about your situation.

The reality

My reality of summer with my kids looks like a constant power struggle between the boys that leads to physical fights, emotional outbursts, and sheer hatred between them—all rooted in deep trauma of abandonment and fear. This plays out with simple acts like ripping the popsicle out of each other’s hands, or smashing each other’s s’mores.

Then we move on to the picture-perfect days in the sun…which in my reality includes incessant complaining because of the heat, or not being able to move, or the sand, or any other level of physical discomfort being expressed, constantly.

Now, in the quintessential picture, these laughing children all seem to coalesce together and join in on summer adventures, but my boys are left awkwardly alone, without friends, not understanding social cues, left with each other as the reminder of their faults.

Finally, the late-night cookouts, with kids running around the neighborhood in glee. My reality, however, looks like attempting to allow that for a night or two, having my boys sleep like crap because they NEED their sleep and can’t “sleep in” like other typical kids their age. Followed by the domino effect of bad behavior, irritability, and the escalation of tension.

Conversely, if I follow my gut and get them in bed at a reasonable time, they are mad they are missing out and still go to bed angry. You see, my reality is not one of love and laughter in the summer. The lack of schedule and routine throws everyone off into a tornado of destruction.

The solution

Our saving grace over the last seven years was a camp dedicated to special needs children. They were outside all day, socializing, learning, and playing. I did this even before I had a full-time job, because it just worked. It was better for my family’s needs.

I spent many years overcoming my shame in not having the summer like we all imagine it can be, but that’s the reality I’ve come to accept. When we have a schedule and routine, it’s not all doom and gloom; the camp gives the boys a way for everyone to have joy.

The same goes for family vacations. The same expectations of laughter and joy and fun can be said for vacation with the family, but I have never experienced that. There are moments of it, when everyone is getting to do what they enjoy, separate from everyone else. It’s just the nature of our family.

I would love to have my family be one I could say gets along and finds joy in adventures together, but that is not how we’ve been wired. We find connection and joy through intimate one-on-one moments. Once we are in the group dynamic, the deep-seated void of abandonment acts as the puppeteer to the play.

The truth

This is the truth of divorced families, this is the truth of special needs families, this is my truth. Instead of wishing it to be different, I accept what is and make it the most beneficial for all as can be—which was always full-day camp. Now I’m left facing this summer with weight I haven’t felt for some time.

Without the routine of camp, I’m back to facing these struggles all over again. Yes, the kids are older, but left to their own would literally mean to their own DEVICES (electronics). The internal struggle of needing space, needing time for myself, and knowing that too much electronics is not healthy is real. The idea of summer is not faced with excitement but rather trepidation and fear.

The support

I want you to know if you face summer with the same feelings, you are not alone. It’s not always the easy breezy summertime fun for all types of families…I see you if you are one who has to fight to find it. Just knowing I have a few friends who can be vulnerable and admit they’d rather not have so much free time with their kids makes me feel less alone.

It doesn’t mean we are bad parents; actually, I think it means we are very in tune with everyone’s needs in the family, including OUR OWN, which is a monumental feat to be proud of as parents. Hang in there; see you at the first day of school celebration.