P.S. After I wrote this I decided to save it as a draft and not publish it. Not because it's a rambling public display of ADHD thought processes, which it totally is, but because it was such a downer coming right on the heels of the meltdown junk I shared. I didn't want another bummer clogging up the blog. Life's more fun than that as a rule, but sometimes life just doesn't seem fun. Sometimes the heavy weighs a little more, the hurts tug a little more at your heart.
This was written on a hurting day.
And then today... well... today was so awesome that I'm able to put this out there in a way I couldn't when I wrote it. Today, instead of hate and frustration we had happy and funny and friendly. We escaped, for one beautiful Indian Summer day, the pressures of our burdens and just ... existed.
No, he didn't like leaving the neighbor's house. But we were AT our neighbor's house. He played with their children. Two ridiculously sweet and adorable and fun little girls. Took turns too, which is a whole other level of where-the-hell-did-that-come-from.
He ran and climbed and smiled and giggled and watched and participated. He tried to swing, wasn't quite sure what to do. he tried to play tag, wasn't sure about the whole you-me-you thing. It was ... awkward... but it was great. It only took... I don't know how long... two years? Have they lived here that long? It was only a few months ago he was growling at these same girls when they came into our back yard, trying to chase them away. Today was a culmination of work and timed interactions and a kind of panicked road block attitude I always had when he interacted with them; let him play for just a few minutes, kept it short, then re-directed quickly before he realized what happened.
There was hardly any roadblocking today. Today everything was awesome.
And then we came home and played in the dirt in our pjs. We ate pizza. We swang for hours, just regulating. Being quiet. Being together.
So when you read the rest of this post and think 'dang that sucks' just remember that even when I wrote it I knew that everything comes in phases. Nothing is the same forever. Some things get worse over time. Some things get better. There's good and there's bad.
And sometimes, on rare and beautiful days like today, there's awesome.
As he gets older, most things about our life get easier.
We understand each other better. We can anticipate each other more often. We communicate better. We enjoy each other even beyond the mother-son relationship: we are friends.
But as he gets older some things get harder. The biggest one right now, the one that causes the most heartache and is the reason behind family drama, is social.
Social-emotional.
He was SUCH a friendly baby. No, he didn't want anyone else holding him, but MAN could that kid charm you. He could giggle and run in circles. He could flirt. He could bring you into his world. At the store he could play the cashier and wrap the greeter around his finger.
And so, so, so much of that has gone away. As his difficulties have solidified, they have also permeated more of his personality. They have overshadowed the free spirit he was born with. The spirit I promised never to break is right there in the danger zone: cracked and fragile. It's the hardest part about our journey. I want the smiles back. I want the flirts. I want the side gazes that let me know that even though he would not give all of himself to the friendly adult requests for child affection, he would give a big enough chunk to leave us all laughing.
And I miss it. I miss the way he would charm people and reel them in.
I miss it terribly.
Because he is getting more and more selective about people as time goes by.
I don't know why.
My guess is that he is blaming those around him for his discomfort. That the sensory and emotional overload that is wrecking havoc on his little body needs a persona for him to fight; and that persona can take the form of anyone in the vicinity. But that's just a who-knows-Momma-is-just-trying-to-rationalize theory. I don't really know for sure.
I do know that our circle is shrinking.
I'm the only one who doesn't get the regular ''I hate you'' treatment from him. Not many people are good with a 5-year-old telling them he hates them. He hates them looking at him. He hates them touching his things. He hates them being in his space. Hate.
He sticks out that little proto-declarative index (yay for small victories) and says "I hate you."
Not many people get that he doesn't actually hate them, he hates the way he feels when his bubble is being poked. It's his word when he's angry or frustrated. When he's stressed. When he's overwhelmed. When he can't get away. When he just wants it his way and doesn't understand why you aren't giving it to him NOW. Sometimes it's just because he was thinking one thing and you didn't know it. Freaking theory of mind crap.
And then there's the fact that he wants to be around people. He asks for it every day. He wants to see kids. See his ''teachers''. See family. Go to stores. To go to parties. He asks to go back to the pumpkin patch. A lot.
But when he's there his anxious-overwhelmed-little self can't deal. Sometimes he tries to tell me.
I love home.I want to be at my home.
..but then it builds so fast I can't keep up...
I hate it here.
... and our favorite...
I hate that (person/people/place/thing/etc).
Because the idea of all these wonderful things is .... wonderful. The reality of them is more... real. More difficult. More noisy. More frightening. More frustrating. More confusing. More. And he wants to escape.
Disordered fight/flight response.
Even our family is getting tired of it. And that's the hardest part for me today. Because it's one thing for strangers to be put off by it. Awkward. Embarrassing.
It's another when friends are. Sad. Lonely.
But when it's family? Heartbreaking.
Neither of us want the isolation that's coming. But it circles closer and closer as our world shrinks.
I certainly 'get' what's happening, don't misunderstand. I 'get' that it's rough on people. That they don't want to be around the negativity. That their kids simply can't understand hearing another child act certain ways they can't approve of or empathize with. Doing things they don't want their child to emulate. That they also want the happy little toddler with the dimples back. They want to be able to say "Hi!" and get a hug and play around with him when they drop by or when we go to visit or when we have a play date. They wanna hang out and have this great, light-hearted time. They want to say goodbye without a fight or a scene or a fit. That they want to stay for longer than his 10 minute welcome threshold.
But our life doesn't work like that right now. Our life is structure and sameness and therapy and lots and lots and lots of really hard work because behaving in a socially acceptable way takes lots and lots and lots of really hard work and therapy and sameness and structure. And even then it only comes in bubbles.
We just completed one of the subtests of a retrospective comparison test.
DAYC-2 (Developmental Assessment of Young Children)
90 days ago on the social/emotional component he registered at age 9 months.
Now he registers at 21 months.
Of age.
That's HUGE progress. Huge. In this one area to make that kind of progress in that kind of time is phenomenal.
His therapists are happy for us... But other people in our life look at him and see a 5-year old boy and expect to get ... a 5-year old boy. A typical 5-year old boy. They don't see the advances and the breakthroughs that were so hard-earned. Because they're invisible.
Autism. The invisible disability. It. Absolutely. Is.
I want to jump up and down with excitement and tell people that today he showed me a Lego project he built from his imagination. OMG. And that he made eye contact with his OT today without prompting. WOW. And that he actively generated a pretend play social story that was perfect down to the tiniest detail. What in the world?!
I'm reveling in his progress.
And then someone comes along and says his behavior is unacceptable.
That he should be behaving better.
That he should be ... more. More than he is.
And maybe he should. Probably, by some mystical scale that I don't have and can't possibly measure with, he should. But all the shoulds don't help us.
He's doing his best. I'm doing my damndest. We have absolutely no idea what we are doing but we're giving it our all. And we're doing it together.
And in my mind, that makes for a beautiful life.
I'm not giving up, either. We'll have more play dates. We'll keep trying the hard things. I'll keep trying to understand him. I'll keep learning what is worth the trouble and what isn't a deal. And I'm going to keep going no matter how tired I am and how crazy my hair looks or how long I've lived in these same gray yoga pants because he is still going. And he is still trying. Whether anyone else understands or not, I'm proud. I'm proud of him. I'm proud of me. I'm proud of us.
Hopefully everyone else catches up.
Love,
Spectrum Mom
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