My name is Tara and I have 2 daughters on the spectrum. I’ve often found it hard for people who don’t have children with special needs to understand how my life is different than theirs – I can’t necessarily go hang out at the bar til 2a just because it’s a weekend.
I see most movies when they hit Redbox, I rarely get to hang out and have a cup of coffee with anyone, and as a stay at home mom right now I spend the VAST majority of my time alone. I used to be so social my home was more of the place where I grabbed a nap, took a shower and changed clothes.
When my girls were younger and their autism more pronounced that’s when the isolation pattern began to slowly set in. Those with neurotypical kids couldn’t understand why mine couldn’t attend birthday parties, movie theaters, theme parks or other large social events. The crowds and noise were too much for them.
Having to say no so often to those with kids who weren’t like mine and having to say no to my friends who didn’t have kids but still wanted to go bar hopping, see a movie, head to Six Flags, etc took a heavy toll. Eventually my friends fell by the wayside until we only interact on Facebook. Ironically now that my girls are much older and their autism is less pronounced, through intense therapy and education, we could actually accept the invitations that don’t come anymore and I can leave them with a family member once in a while so I could have some ‘me’ time.
Over the last few years as I spent my time concentrating more fully to help my kids I became more isolated. People without special needs kids don’t understand the demands and those with have just as much on their plate. I once had access to a great support network and wonderful mom friends. Since our kids were similar we could arrange playdates sensitive to their needs or our husbands could watch the kids for a couple of hours so we could go see a movie together.
But my girls outgrew the program they were in and weren’t doing well in their new classes so we had to find a new school that could help them succeed. When we moved to get better help for the kids I lost my support and friends. We still talk on Facebook but it’s been 2 years since I’ve gotten to see them in person.
In my own area I tried to find something similar to what I had before but the people here don’t have the same tight community we had. My attempts to get the school where my girls attend to help form a Support Group so we could meet more people like us have failed because their FERPA regulations are more strict than our previous school.
As my girls have succeeded greatly to the point I can take them to the movies, theme parks, city attractions, birthday parties, etc I’ve become REALLY isolated. I can literally count on one hand the number of times I’ve been able to hang out with a friend in public in the last 2 years.
I LOVE my kids and do NOT regret having them at all but I would be lying if I didn’t admit some days are really hard. I would LOVE to be able to have a cup of coffee with someone who doesn’t want to give me a play by play of Peppa Pig or go see a movie while it’s still in theaters.
I wonder am I the only one who struggles?