This is Day 16 of the Ali Family #AutismTruths – April 16, 2017.
I see what you did there. You knew what you were doing. Of course, you did.
On the last day of spring break, when I was feeling this side of exhausted and a bit down for really no good reason, you sent to my home an unexpected visit with a friend and family I had never met before. And you said to me – think beyond your world, Dilshad. Think beyond what D is able to do and not able to do. Think beyond the challenges. Find your positive.
You knew that spring break, and historically any break longer then a three- or four-day weekend was generally a tough time in our home, with D often losing grips on himself due to the disruption of his school-therapy-home routine.
You knew that traditionally I dread any sort of break from the routine and the feel a rise in anxiety when it comes to planning any sort of trip, whether it includes D or not.
You knew that even though we attempted a new adventure during this spring break and that most of it went surprisingly well – well for what is our history of taking trips and attempting new adventures with all of our kids – that I was too occupied with thoughts of what was difficult, challenging, and far from the norm in comparison to other people’s trips and non-trips.
You knew for far too long I had been dipping my toe, then my foot, then my calf, then my leg, and then sometimes up to my waist in a negative, mopey, icky, droopy, blue-baiting, pool of self-pity and unhappiness. Though if I could wipe the dusk from my eyes, I would be seeing that things were chugging along fairly well – no worse and really a bit better than anything our family has gone through in the past.You knew that I was wrestling with myself to rise above this and find my equilibrium, find my positive, find my happy. That I was wrestling with the rituals of faith for it to all mean something to me again.
You knew that life was moving forward like it always has, and that everything was getting done, everyone was being cared for, work goals were being pursued and achieved, smiles were being had and laughter was being shared around the dinner table – but that it wasn’t sustaining me.
You always knew.
So, today you set up an unexpected meeting with a friend, someone I’ve known only through online exchanges of shared autism, disability and Muslim experiences – a rare combination to find. You brought this friend and her family to my home, sat us down at my kitchen table for chai, burnt mini samosas, cookies and conversation.
About how neither she or I can keep tasbeehs (the Muslim equivalent of rosary beads) in our home because our sons will try and twirl them and break them. About how fighting the school system to do right by our kids is an exhausting and frustrating battle. About how Medicaid is different from state to state, and how you may think “blue” states would have a better Medicaid system in place, but that’s not always the case. About how blessed we are to have our other “neurotypical” children who are such damn good kids in living this family life with us.
About how at the end of the day, it’s in Your hands – Allah’s hands – and when nothing else makes sense, all we can do is lay our worries and grief with You and trust that there is something better that will come of all of this.
You also know that this meeting of friends won’t fix everything, but it’s that small positive step forward that I needed this week. And that maybe, just maybe, it’ll keep pushing me forward to be more thankful, more grateful, more in control of choosing my own calm and happiness, just like I keep trying to facilitate for D.
Yours humbly with love,