One week. That’s all it took. One week of “ok, this summer thing is going to be all right” – as we all kind of got to know one another in that full-time summer kind of way. We did ok that first week – kind of like when you’re getting to know a new friend, and you are a bit overly polite and nice about the little stuff. Sure, I can make pancakes for everyone at breakfast, and then make 3 different lunches based your own personal favorites or I can tolerate a few too many episodes of “Mickey Mouse Clubhouse” – even though it’s my 11-year-old watching them and not the 6-year-old.
One week – the relative harmony lasted. My friends, the honeymoon is over.
Here’s the deal – as with everything in my life, I recognize that some of our challenges are autism related, and a lot of them are just life – and frankly, I don’t know where the line is drawn. It takes about 30 seconds on Facebook to know that I am not alone, and that many parents are having moments of summer ugliness. That said, autism is that extra component that takes the typical and often pushes it over the line in the sand – and so for me, the honeymoon is over and the “for better or for worse” kicks in.
So, what’s so challenging? Elliott has virtually no independent leisure skills, and because of that, if I am not 100% diligent about keeping him occupied every minute of the day, his choices include things like irritating Henry & Ada, looking at and obsessing over store receipts, asking me the exact same questions over and over again all day long – quite literally hours and hours, and/or sneaking Oreos & other sugary snacks that cause him to be even more fidgety.
This can make family time very challenging for us in a number of ways. While Henry & Ada both enjoy movies and hanging out together time, Elliott does not have the attention span nor the ability to comprehend a full-length film yet, (except “Toy Story 3” which he has memorized in its entirety). Especially when Tom & I are tired – like after a long day of activities when everyone is exhausted and just wants to watch a movie – that’s when E’s difficulties seem most pronounced. As someone who loves movies and loves sharing my old favorites with my kids – this makes me feel sad.
For 7 ½ years, Elliott had a home-based therapy program to help him in a myriad of ways, and believe me when I say that the progress he made was life-changing and remarkable. I know that without a doubt he will have a better future because he was able to accomplish so much in his home-based therapy program, but as a Mom, I always want more for him.
We worked on so many leisure skill programs during his time in therapy that I could fill my basement storage room with the paperwork (and for the most part, have). At one point, he was even up to 2 hours of sustained activities – granted this was with a very structured list and a big “reinforcer” or prize at the end. I had always hoped that with the multitude of activities/experiences we have exposed him to, that he would begin to naturally make those choices on his own at some point. And yet, for Elliott, this continues to be tremendously difficult and elusive.
It’s not that he dislikes everything – frankly, if I work through the tantrum of asking him to do Legos, Wii, a word find, play a new game, etc., he will do it, and usually even enjoy it after he fights it – but it’s so much work every single time that it’s exhausting. Sometimes, I tire of the battle, and as a Mom, I feel guilt about that because my son needs me to forge ahead even when it’s hard.
Even more challenging for us is that when Elliott & Ada spent a lot of time together, Ada’s challenges re-emerge and she tries out some of her less than typical behaviors that for the most part had been replaced by more typical or natural behaviors. Things such as toe-walking, babble talking, flapping her arms, sing-song voice (prosody issues), jumping & climbing objects, etc.
While in May, Ada had virtually none of the challenges just mentioned, and is registered for Kindergarten in a typical classroom because that’s what the school district recommended after watching her in her preschool setting and having no concerns about her ability to fully function in a mainstream setting, now, just a few weeks later, I’m certain they would have concerns. Lord knows I do.
That’s hard to even type – it is detrimental for my youngest child to spend time with my oldest child because just being together causes regression for her. Even more challenging is the feeling that while Ada is still receiving therapy services, Elliott is not, and while I get why that is, there is a piece of me that feels like we are helping her but not him even though he needs it more. It hurts.
And then there is Henry. When the constant bickering begins, he retreats to his room, and his computer, and some days I’m so busy, sad or overwhelmed by dealing with the chaos, that he gets almost no time or attention at all. The other day, he walked into my room, and I took one look at him and started to cry. Where did his childhood go? In so many ways, it feels lost in a sea of autism, and I missed too much of it because I was overwhelmed or pulled in a different direction. That’s just not fair, and I’m feeling crappy & guilty about that.
And so it is that the honeymoon is over, and the hard works begins. Yesterday, we had a chat on the red couch about our goals for the summer – and though the trio is not thrilled, and we have much to refine, we are all going to work on some things are that not easy for us. Each of us needs to work on trying new things, and doing things in a new way.
I own that I’ve been too overcommitted of late, am stuck in a bit of a sad place, and need above all to work on my patience. Patience has never been my strength, and with 3 kids, 2 on the autism spectrum, my kids need an endless amount of patience.
And while I have many flaws, one thing I’m not afraid of is sharing with my offspring my weaknesses. I hope that by owning them, and committing to work on them, and asking for their help, that I can make a little progress this summer.
So, maybe, just maybe, if we all help one another, by the end of the summer Elliott can have a leisure skill that he chooses on his own without reminders, Henry can emerge out of his man cave to share with all of us his plans to build his own computer, and Ada can dazzle us all with her “Kindergarten ready” prowess. Heck, we may even find a movie (not Toy Story 3) that all of us can enjoy. Most of all, when Dad walks in the door from work, we might all be having fun together rather than kids yelling and me dreaming of a mojito (ok, my dreams of mojito’s are staying – just sayin’).
Dream big, right? That’s what for better or for worse is all about. . . .