This is Day 30 of the Ali Family #AutismTruths – April 30, 2017. Last post of the series.
The kids’ activities for the day were clear to me when I woke up: H had Islamic Sunday school, D had Open Gym, A had homework and I had plans to do laundry and run a bunch of errands. I had a caregiver coming to help me manage everything, with the kids’ Baba working this weekend. Everything was planned out in my head.
Except, there was a vibe coming off of D this morning that was familiar to me in an anxious, edgy way. The morning showers had gone well and I had managed to change the sheets on two of the beds and get a load of laundry in. But, as I was giving the boys their breakfast, D was definitely showing signs of anxiety and irritation. Is this momentary? Is this indicative of something bigger? I hope this day goes well, I thought to myself.
That’s part of our autism living.
I dropped H off to Sunday School and came back to reassess the day’s plans. Yelled for A to get up, then sent D upstairs to wake her. I got going on the morning’s dishes. D’s minor meltdowns was still punctuating the morning, but it was too early to tell how this was going to all play out.
His care giver promptly rang the doorbell at 12:30 pm, and I ran through the day’s activities with her. Finished loading the dishwasher and started cooking dinner, since I knew I wouldn’t be having time later to do it. Then I put the timer on and told A — who by then had woken, had breakfast and was doing homework — to turn the stove off when the timer went on.
I ran upstairs to take a shower, when I received a text from my sister-in-law.
She was asking us to join her and the kids for an impromptu picnic in the late afternoon/early evening as a birthday surprise for two of her kids, who share a birthday tomorrow.
Ok, how are we going to make this happen? I thought to myself. D has Open Gym until 4:30. It’s hot outside. I don’t know if he can handle going from one outdoor thing to another. Will his Baba be done at the hospital in time to join us?
There was a quick flurry of texts between myself, my husband and his sister. We said, yes, we can make it happen.
Then there was a flurry of texts between the husband and me:
Me: I’m planning to send D to Open Gym with his caregiver. That ends at 4:30. His caregiver could then bring him and meet us the park for the picnic.
Him: Won’t it be too much? Two outdoor things in a row? How late can the caregiver stay? Maybe it is better that she bring him home after Open Gym, and we’ll go to the picnic.
Me: Let’s play it by ear. If he doesn’t have a good session at Open Gym and gets upset or overheated or something, we’ll have her bring her home. If he has a good session, I’ll tell her to bring him to the picnic.
I finish showering and, go downstairs and see the clock: Time to get H from Sunday School. I’m leaving, I yell to the caregiver, D and A. I go pick up H from Sunday School and come back home. D is waiting for me at the door, hungry for his lunch. I give the kids lunch, and D plows through his while his caregiver readies his bag to take along to Open Gym.We all get ready to leave at the same time – H and I to go run errands before the picnic, D and his caregiver to Open Gym, and A staying at home to get some homework done. I tell D’s caregiver that they can leave OG early if he gets too hot or upset. As H and I head into the garage, I can hear the signs of distress come from D again. Oh God, I hope things go well. It’s hot today. I hope he doesn’t get overheated or upset. I hope it goes well.
I have a paranoia of sending D to Open Gym with anyone but me. One time, three years ago on an overly warm day, D was not feeling things and got upset at Open Gym. The anxiety escalated in a matter of seconds to a full-on meltdown, and he banged his head on the concrete. I was right there with him. That evening his dad noticed a white spot in his right eye, which led us to his family doctor the next day (after another head banging episode in school), which led us to the ER, which led us an appointment with a pediatric ophthalmologist and retinal specialist.
That appointment occurred on April 2 – World Autism Day – three years ago. That was when we found out he had lost his vision in his right eye due to self-injury.
I’ve never written those words in these posts before. I’ve alluded to the tragedy many times but have never come out and said it. It hurts too much.
That is part of our autism living.
This is what I’m thinking about when I send D with his care giver to Open Gym today. One may think – why send him out at all? Why take the risk? Well, what is living but a series of daily risk-taking events in our efforts to life a full life? D, and us with him, has been taking risks and pushing forward and seeking his place in this world, his chance at good health, mental stability, fruitful communication, peace and happiness from the day God gave him to us.
D has been burned badly by risk taking. He has also carved out quite a life by taking risks as well. For us as his parents, it’s been an exercise in overwhelming guilt and heartbreak as we guide his choices and make decisions for him, as well as profound love and overwhelming joy.
That’s our autism living.
I gave D some medicine and sent him on his way with his caregiver. H and I leave to go run our errands. I pull the car over and text the kids’ Baba, telling him – I’m making an executive decision. I’m telling the caregiver to bring D home after Open Gym. It’s too hot, and I think we’ll be pushing him too much if we have him come to the picnic straight from OG.
OK, my husband texts back.
We run our errands, and as we get ready to head back home, I text D’s caregiver – How did it go? How was D? Just go ahead and come on home and then chill and relax. I think it’s better you guys skip the picnic.
She texts back – D was great! He had a good time. Drank lots of water, seems a little tired. We’ll see you at home.
Later in the evening, with my husband having left the picnic early and gone home so that the caregiver could leave on time, he sends me a text: Good call on D going home after Open Gym. He’s relaxing in his room and seems pretty happy.
My body is flooded with relief. I made a good call. This turned out to be a good day.
That is our autism living.
And, since autism doesn’t end like that – this will still be our autism living tomorrow, when it’s May 1st and no longer “Autism Awareness Month.” D will still be autistic. We will still be risk taking, we will still be autism living.