Like many parents of special needs children, I am a member of several online support communities. Mirroring the evolution of social media through the past two decades, these groups have gone from now obscure platforms and landed on Facebook where those of us over 40 seem most comfortable to stay firmly planted. Most of our children are in their teens, which means we have been at this game for some time. You might think that would make the inevitable summer break easier by now. Surely we would have figured out how to line up the appropriate supports for our children and ourselves by this point? Surely we would have made peace with the fact that our lives are just different than those of families with typical children and we would have found joy in our version of normalcy?
Surely that’s all a bunch of nonsense...because each summer I read messages from my fellow brethren echoing what we all feel but sometimes don’t express for fear we may sound like we are having a pity party for ourselves: Summertime just isn’t always very fun when you have a child with special needs.
This morning I read the comments of women in my autism support group expressing how damned depressing this time of year can be. The mother who originally posted said, ‘Do any of the rest of you feel really lonely in the summer? Lately it really hurts watching the carefree lives of everyone else.’ Many responses followed, all mirroring the same sentiment of estrangement from our typical parent peers. This same mother said, ‘Every time someone at work asks where we are going for vacation, I seriously get tears in my eyes.’ Another Mom chimed in saying, ‘Summer is hard because I see so many people being carefree or just hanging out at the pool and doing fun summer activities. I get caught up in the that’s how things SHOULD BE mentality. So yeah, definitely no carefree summer going on here!’’
Now don’t get me wrong, I enjoy the part about summer where I sometimes get to sleep later than the typical school day allows, (not all special needs parents have the luxury of a child who actually sleeps, so I’ll count my blessings where I can), and I also enjoy those days where I am fortunate enough to have a caregiver around to watch my older son so that I can have those ‘typical’ summertime experiences with my husband, younger son and friends. But the cost of those outings-both financially and emotionally-can really weigh you down. First you must grapple with the guilt of leaving your child at home. In my case, my son will often become agitated and aggressive when forced to participate in activities outside of our home. His superman, adrenaline-fueled strength during these unpredictable episodes has happened enough to give me great pause when considering taking him anywhere. And as if that weren’t enough, five hours of caregiving costs me roughly $100. That adds up very quickly, especially when doing the very thing you needed the caregiver for ends up costing you another $100 or more. We recently attended a family wedding in Ireland. My mother-in-law (bless her) has been our go-to overnight caregiver for the past 15 years, allowing us vacations that many special needs families are not so fortunate to be able to take. But she was traveling to this wedding as well, so we decided to take the plunge and hire caregivers to stay the six nights we were away. It was expensive and really freaking scary to leave Miles. I begged my husband to book us on separate planes because I couldn’t stop worrying about the very unlikely scenario of our plane crashing, carrying the four main people in my son’s life. And then there was the worry of a seizure--which he did unfortunately have while we were gone--and what I would do if it was ‘the big one’ and I had to get home to him. Thankfully, all of these fears were unfounded and we ended up having a lovely and much needed getaway, but the stress leading up to the trip was barely trumped by the pleasure of going on it.
I snapped the photo above this post a few weeks ago after placing my yearly call to one of Texas’ special interest waiting lists for people with qualifying special needs. There are several of these in my state and each has a waiting list tens of thousands of applicants long and taking up to 10 years to muddle your way through. Each summer I receive a letter in the mail asking if I wish to remain on this list. I shudder to think about the consequences of forgetting to call them. We are fortunate in that we had people educated in state laws and programs mentoring us in my son’s early years, advising us to get on these lists. By the age of three we had Miles on each of them, but life intervened and our family was transferred to California for a five year stint and we lost our place in line. I knew to immediately get us back on those lists when we moved back to Texas in July of 2013, yet six years later, here we still sit at number 39,941 on the one I would most love for my son to receive services from, Community Living and Support Services. This program provides home and community-based supports to people with intellectual or other disabilities that began in childhood and aren’t likely to be outgrown. This program would offer assistance in the form of respite (for us) and behavioral and life skills therapies to my son in the environment he is most comfortable, our home. My family is fortunate in that we can afford to seek out services for my son. Many parents with special needs children are not, and when those kids aren’t in school the loneliness and despair they feel paired with having to find and pay for qualified caregivers can be quite daunting.
Some states provide better services than others, but I have found for the most part there are pros and cons to living anywhere. Whereas we received many benefits through the state of California, we paid an exorbitant state income tax and struggled to find good schooling. In Texas the cost of living is a bit lower and we have a wonderful public school for our son, but we lack access to state programs that could help lighten the load a bit further.
Receiving respite services or the like would certainly help to alleviate some of the stress special needs families experience during the summer, but the reality is that even with a little help the periods of loneliness for special needs families just tend to be a bit more magnified. Getting away from the daily routine that school provides takes away the security net one has in place to experience ‘normalcy’ during school hours, and seeing the photos of friends enjoying summer vacation as a complete family can really sting at times. If you are a friend to a parent who may be experiencing loneliness and isolation due to parenting a special needs child, reach out to them! Invite yourself over for a glass of wine. Sit on the porch instead of inside if they have a child who can’t handle the sensory stimulation of others in their space. Invite them to go for a walk around the neighborhood. Ask them questions about their children. Try to get to know their kids. I have friends who do these things for me, and it has made a world of difference in my life.
And finally, to all of you special needs parents out there: don’t be afraid to ask your friends and family for help or let them in on the challenges you experience. People don’t know what they don’t know, right? And remember that asking for help doesn’t always have to mean help for your child! Be vulnerable. Put yourself out there. Find a co-worker you feel you would like to connect with, but fear you may be too different from and invite them to chat over coffee. The most amazing thing I have learned along this journey is I am only as lonely as I allow myself to be. When I get out of my comfort zone and share struggles with people who seem to have it all together I find that even if their challenge isn’t parenting a special needs child, that they likely have a challenge elsewhere that they were just as afraid as you to share. I don’t know many people who have found themselves in the middle of life feeling as though things all turned out exactly as they thought they would. Bumps and turns arise in many different forms. We’re all in this together. I hope you find a way to feel less lonely this week!