On The Outside

I genuinely try to keep a good sense of humor about the things going on in our lives.  I think that’s come through very well in the majority of what I write. There’s enough horrible things in the world that something like this – having a relatively high-functioning autistic son – is a minor speed bump in an otherwise pretty decent life.  It’s not like we’re dealing with a fatal illness, with poverty, with hunger, with homelessness or the scourge of war.

No, it’s just a clump of small problems that tend to wander around as a mad little mob, waiting to pop out at the odd times.

I’m sure that this is something that most parents in our situation can relate to – few of our friends or family have children with real issues.  (Most of them, thankfully, have beautiful, healthy, typically-developing-in-the-neurological-sense children.) I hear about or see sibling squabbles.  There’s the discipline problems that just won’t go away.  There’s the picky eaters who won’t contemplate ordering something off the children’s menu in a restaurant because it doesn’t meet with what they want for the evening.  The one or two who absolutely, positively, don’t want to go to bed on time.  There’s the children who are upset because they want XYZ toy and they’re being told to wait until their birthday.  But that’s the limit of the ‘issues’ that their families deal with, and most of the time, it’s happiness and enjoyment.

I got over being jealous of ‘typical children’ a long time ago.  It’s not where we are at the moment, and I learned through my life experience that sometimes we don’t get what we want, and you have to live with, and enjoy, what you get.

What I still have trouble with is feeling isolated.

My friends’ children are playing sports.  They’re getting invited to birthday parties.  They’re getting invited over to the yard next door to play on the giant inflatable water-slide-structure-thing on hot afternoons.  And their parents are getting together at these things to socialize about how things are.

My family?  We’re at home.  We’re letting the Monster play in the backyard inflatable pool, or we’re going to the playground, or the JCC.  When we do get invited to a party or whatnot, one of us is generally within arms-length of the Monster to ensure that he’s either playing nice or not going off in some random direction to places he’s not permitted to be in.

Which is not saying that we don’t ever get to go out with our friends.  I lunch with one friend weekly, the wife’s in a Mommy’s group which has game nights and book club, and we do get out with a couple or two now and again.  But… it’s not anywhere near as often as I feel like my friends, family or coworkers are getting out with their friends.

And the problem is, I don’t know how much of it is due to… whatever.  This is the part that eats at me when I’m lying awake at night, trying to figure out how I can ‘fix’ the parts I’m able to affect.  How much of it is because the people in our circle don’t know what to say or how to be around the Monster?  Or if they don’t know what to do about their kids around him?  How much of it is due to the fact that our Monster doesn’t make friends, doesn’t notice the other children his age who he spends half his day with?  How much of it is due to our friends and family not knowing what they can or can’t say around us without worrying that we’re going to get upset?  (And on that note, the wife and I have quite different thresholds/takes on what is and isn’t ‘safe’, which makes things probably even more confusing.)

I just miss not feeling like I’m on the outside, looking in.

4 thoughts on “On The Outside

  1. You are an amazing father and person. It is so clear that you are looking within yourself for answers, reflecting on these questions online and sharing your thoughts with the world. We are all lucky to read your posts and probably better people for reading them as well. Thank you – keep writing – I’ll keep reading.

  2. I must admit, I never had the issue of feeling isolated due to my own “monster” but I think it may be because my wife and I are so used to living in a sort of isolation already. I think our salvation may come by ” we don’t know what we’re missing” or the even better, ” ignorance is bliss”.

    I can completely sympathize with never being to do anything without making sure someone has an eye on the boy. Like you, my wife and I let the kid play in the intex inflatable pool in the back yard, and take him to the park.

    I also try to take him with me on errands. He seems to love the car ride and doing things with me. Of which I am grateful, but I do wish I could put him down and expect him always to stay out of trouble or follow me. When I take him shopping, I make him sit in the wagon just because it’s easier if he can’t get away.

    I take a lot of comfort in knowing and constantly reminding myself that he changes everyday. That today’s challenges will hopefully be tomorrows successes.

    I have a good friend who is some years older than I am. Twin boys at age 20 who both graduated college recently. Both his boys were diagnosed with advanced levels of autism. He was told that his boys would need to be institutionalized. What a crushing blow that must have been, but today they are fine. Delayed by a few years maybe, but with promising futures.

    I’d like to believe that we are faced with challenges in order to make us stronger for some reason.

  3. One family I work with just got an almost-confirmation that the boy is likely on the spectrum. More testing is to be done. The mom says she wants to be around other familes that “get it.” The not talking, the repetition of a few words, the toe walking, the flapping etc. She got in contact with someone who sort of does family matchmaking to help things along. Maybe the center you go to has some information? Maybe you could talk to other parents at the school program who are in the same proverbial boat and might be willing to get together outside for playdates? The isolation is one of the hardest parts. I know it all too well for other reasons…

    • It certainly couldn’t hurt to see if any of the centers near us do that kind of matchmaking service. The men I met through the support group have kids who aren’t in the Monster’s age range, at least the ones at the meeting this past month.

      As for the school program, it’ll be a ‘wait and see’ until August rolls around.

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