This is Day 15 of the Ali Family #AutismTruths – April 15, 2017.
What do you say? Can I skip out on Day 15 of this month – hump day and all? I’m kind of “autism awarenessed/actioned” out today. Last night we had some family come to town to meet us and my sister-in-law’s family. My SiL hosted, and with so many people coming and it turning into a late evening, the husband and I decided that one of us would stay home with D.
So, I did.
When he looked proficiently sleepy enough, I ushered him to bed and then came downstairs. But, soon enough I could hear the screaming and thrashing from his room. So, I went in to sit with him.
It’s ok, D, I told him.
There was nothing I could do but sit there in his room and pray that what he needed to regain his calm was the presence of his mother in the room with him.
And so, soon enough, he slept.
But when the family returned from the late-night dinner party and settled into bed well past midnight, and when I settled myself for sleep, I heard his sounds.
One of our longest battles for D has been for his night-time sleep. This story is not unique at all to us – it is the lament of more autism families and autistic individuals then I can count. Trouble falling asleep, staying asleep. Children and teens wandering off, eloping in the night while their loved ones struggle to keep up and stay awake to help keep things safe.
On Day 15 of our family’s #AutismTruths, I wave the white flag in the struggle for D to get a good night’s sleep. We have many supports, sensory and otherwise, in place to help him achieve restful slumber. After years of sleep struggles, we came upon a set of supports that seemed to work. And, when those supports would fail, we would find another set. And another.
Now he’s nearly 17, virtually an adult, and the struggle is just as real as ever.
So, after nearly 24 hours of wakefulness, D is in bed, and my fingers are crossed for sleep.
And, like the advice we give to new mothers, I’m going to try and sleep while he does.
So, that’s all for tonight. I leave you with the words my mother-in-law used to sing to D to soothe him from strife to sleep as a baby and a toddler, words I still sing to him now:
Hasbi rabbi Jallallah (Sufficient is for me, my Rabb. Allah is great.)
Ma fi qalbi, Ghairullah (There is none in my heart besides Allah.)
Noor Muhammad Sallallah. (The light of Muhammad (blessings upon him))
Haqq La ilaha illallah. (Truth, there is none worthy of worship but Allah.)