Friday we met with a new neurodevelopmental pediatrician for J-Bear. This is the doctor that follows his autism and his development rather than treats his physical health. She is on his team to keep him growing in the best way he is able cognitively, emotionally and mentally. It was a great visit and we covered a lot of ground about the inner workings of a J. He fell in love with her welcoming, fantastic office. This doctor knows her typical patients, let me tell you. The office was quiet, the colors were peaceful but not glaring and the lighting perfectly right. Large Yogibo beanbags peppered each of the rooms and there were plenty of toys for hands big and small to keep calm with. J was in heaven.
The more we all talked as J played and engaged on his terms, the more we realized some things have been long-term issues without resolution. The largest of these issues is sleep. J does not sleep well on his own. He cannot even sleep by himself, for starters. He has to have another human beside him to help him allow his body to go to sleep. He does not sleep through the night with ease and even when he is sleeping he moves constantly. It’s like he runs miles in his sleep, I swear. This leads to exhaustion and a shortened fuse every single day for this poor kid.
We tried melatonin and for our trouble got night terrors. We tried weighted blankets, which give marginal success until he kicks them off as he overheats easily. We tried a dog and though she could help about half the time, he could get overstimulated by her presence though she sure did try. We’ve changed lighting, we’ve changed routines, we’ve changed everything we could think of… Still, sleep is completely elusive for this poor kid*.
There was much discussion and we came to the conclusion that medication is in J’s best interest.
People do not like to consider medication for anything but the strictly physical. I remember in August of 2011 being at a point where I just actually wanted my life to end. I was in so much mental pain and in such a deep state of being unable to escape the symptoms of what turned out to be complex PTSD that I actually thought ending my life would be better for all sides involved, even my then one year old son. Disgusting and scary, right? Medication was the start to saving my life and yet, there are those who would mock medication for mental illness. There are those in my life who did use my turning to medication as a weapon. There are people who will judge harshly over this choice too I am sure.
If J had an ailment that disrupted some physical process like insulin production, the ability of his blood to clot or not clot, etc., no one would bat a lash at him taking medication to keep his body healthy and able to function. That is what we were hoping for him now. The body cannot function without reasonable amounts of sleep, good sleep, and we’re working hard to help him get that so he can feel better in his own skin. The pros and cons were weighed. The pros heavily won the day.
The dose is quite, quite tiny. The doctor jokingly said he pretty much just needs to stand near the bottle and inhale, the dose is so small. She’s not far off on that description! We’re starting small and seeing how it evens out over time in his system and if this is enough. It’s been but two nights and things have been different in moderate steps. He sleeps better, but still not through the night. He is calmer during the day, but that could either be from what sleep he gets or from feeling mellowed by the medication as his body adjusts to it.
It’s been nice to see him being more able to work through struggles the past couple of days. I am hopeful that this is a sign of things to come. Yesterday, he helped me do a few things for my mother. He made his pop-pop laugh and his nonie smile. He swept their floor, showed them how to use a swiffer duster and generally was charming. This was something that was much harder but a couple of days before.
Now, medication is not our only answer for J. Ever. We are adding in some therapy that hopefully will fall in line with therapy he had great success with as an under 3-year-old and of course in due time his service dog will arrive. He’s not a boy for whom one single tool will aid all situations. He will always need to keep that toolbox full and it’s my job to make sure that it is just that, full and at the ready.
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*= So funny story: if you want to see J sleep like a total dream, like he’s never had a single issue with sleep in his life, put him on a cruise ship in rough waters. The sensory stimulation alone sets his entire body at such peace and rest. It’s not something one can replicate on land easily but hey, maybe this means he’s meant for a life on the high seas!