Playing the Autism Waiting Game

Happy New Year! (about a month late, I know)

This past month, I spent some time reflecting on all that happened last year – especially with how our boys grew and changed.

And I have to say, some truly amazing things happened in 2016 with our boys – some major milestones were met.

Samuel became potty trained, and our family said farewell to a decade of buying diapers.

Gabriel learned to ride a bike.

Noah started having play dates with friends (and his first sleepover).

But, it also occurred to me how much later in life these milestones happened for our kids than for neurotypical (or “normal”) children.

Autism creates all sorts of delays in social and emotional development, and in some cases, these delays take years.

• Samuel became potty trained – at age 4 (usual age for potty training: 2-3)
• Gabriel learned to ride a bike – at age 12 (usual age to learn: 3-8)
• Noah had his first sleepover– at age 9 (usual age for boys: 4-5)

Of course, these milestones vary and sometimes depend on your culture, but looking up some reputable American sources, these were around the usual ages.

For anyone who has seen my Facebook posts, I’ve happily screamed about all three of these events on my timeline for anyone who would listen.

Because milestones are important to parents.

They help us mark the occasion that change is actually happening – that all of the work we’re doing as parents can actually produce a positive result – which – in the midst of all that hard work, is often hard to see.

While Daniel and I were both ecstatic to have Samuel finally independent enough to use the potty on his own, and while we are super proud of Gabriel finally becoming brave enough to try the bike on his own – the fact that Noah had a sleepover for his 9^th birthday earlier this month was especially profound for our family.

Daniel and I can’t stop talking about it – because it is literally the first sleepover our family has ever hosted – as Gabriel has never had a sleepover in his life.

Now, this may seem to most like a very simple thing that we could easily control, and you’ll probably think it’s our own fault as parents that we haven’t hosted a sleepover.

But the thing is, Gabriel never had any friends who wanted to come over to our house and spend time with him (things are looking up however… – I’ll keep you posted).

In truth though, it has been the rare occurrence that Gabriel has been invited to any birthday parties, and he himself has never been invited to any sleepovers. He continues to sit by himself every day at lunch, and wanders around by himself during breaks between classes.

In honesty, a lot of his isolation is self-inflicted. Kids have tried to reach out to him on multiple occasions, and he’s been out & out rude to them.

Defense mechanism, I get it.

Daniel and I even offer to sit with him at lunch (which, yes – that would probably be very uncool for a teenager to have his parents sit with him at lunch) but getting back to my point – we’ve yet to really have the opportunity to host his friends at our home, the way that other parents do with their children’s friends.

And Noah has been no exception to the Autism exclusion factor: he’s definitely had his share of kids ostracizing him in the past. I want to hang my head and cry when I think of some of the things I’ve heard kids say to him.

But now, for some wonderful reason, the stars have magically aligned and Noah has not one, but two – really good friends. And for the first time, after being parents for nearly 13 years, we as a family finally felt like the conditions were right to host a sleepover for one of our boys.

For Noah’s 9^th birthday, we took him and his two friends, along with Gabriel and Samuel, to the massive, world’s largest (literally) Chuck E. Cheese here in Jeddah, and watched our birthday boy run around playing and screaming with his “friends.” His friends.

I just keep wanting to repeat it: my son has f-r-i-e-n-d-s!!!!!

Daniel and I watched Noah (while also scrambling around to keep up with Samuel, who was definitely getting his fill of fun) and every few minutes, Daniel and I would exchange quick, Mommy/Daddy glances filled with amazement, surprise, and pure, PURE happiness.

As parents, we have gone for so very long watching our little boys be excluded and wander around full playgrounds by themselves.

I think that takes a toll, emotionally. It must, as we don’t know (and will never know) what it’s like to have a “normal” child who easily makes friends.

But at this moment, we actually got to watch our boy be INcluded. To have fun with others, not merely exist in the midst of others.

We became “sponges” – because Daniel and I soaked up that experience unlike anything else in our lives.

However, my heart still hurt because Gabriel seemed lost. He’s almost 13 so he’s pretty much grown out of Chuck E. Cheese, and he wandered around by himself for most of the evening. The saving grace for him was near the end of the night when we got everyone together for a couple of games of bowling; then he came alive and loved it.

On the drive home, our SUV was absolutely weighted down, filled to the brim with boys (and me. 🙂

Simultaneous loud chatter, laughter, fighting over who gets to use the iPad next, etc.

Best sounds I’d ever heard.

I was so incredibly happy. I was floating and fighting back tears at the same time.

We’d waited a very long time for this; a milestone that usually takes 3-4 years as a parent took us 12 years – but it was worth the wait.

And the actual sleepover was amazing. We were so happy to feed them cake and ice cream and make sure they had their sleeping bags situated and a fun movie to fall asleep to and plenty of pillows and etc., etc., etc.

Things that other parents might find annoying or commonplace – we relished in every little detail.

So now, I’m addicted…!   I’m becoming that “annoying Mom” to my boys’ friends’ Moms, and setting up play dates as often as I can.

But I’m also nervous. I’m afraid it’s too good to be true.

Dynamics change, and what if Noah loses his friends?   What if they get tired of him? What if he goes from playing with others at recess back to sitting on the picnic table by himself, head down?

I’m bracing myself because I know this is a very real possibility – and make no mistake – if and when it happens, it will hurt like hell.

But this is life, and that’s OK. This even happens to neurotypical kids. And I know now that I’ve been too complacent with expecting my boys to do all the social legwork on their own. I need to try and facilitate more opportunities for them to interact with other kids, even if it isn’t perfect and even if in the midst of a play date or sleepover they are excluded, at least we’re trying.

This is especially true with Gabriel. While he’s probably too old for sleepovers now (not sure; is 12 too old?), I’m working on facilitating situations where he can interact with others his age. If he won’t initiate friendships on his own, I know I can’t force it, but I can sure try and set the stage.

And Samuel….?  He is the most aggressive and social of our boys.

I worry about him because I’m afraid that being ostracized by others will hurt him the most, as he already displays such a deep desire to be included in everything around him (a character trait that makes me so happy, but also terrifies me at the same time). I pray he doesn’t lose that drive, and that we are able to provide the interventions that he needs to be able to make and keep friends.

So, frankly, playing the Autism waiting game sucks. It’s not fun.

I suppose it makes us as parents feel left out too – to see other parents enjoying their children’s milestones so much earlier in life.

But I’ll tell you this – the waiting (even waiting for years…) makes the actual, eventual occurrence of the milestone very, very wonderful.

Even though the progress is slow, as long as my boys get there and eventually reach those milestones, I can certainly wait.