Someone from the National Brain Research Institute got in touch with me a while back asking if I could enroll Sahil in an MRI/fMRI study on the processing of music vs speech in persons with autism. I was pretty interested as I read a lot on the brain and have always been curious about Sahil’s brain and how it is so different from mine. Not worse, infact definitely more efficient in some areas of functioning.
They would also share all test results- a structural MRI, f MRIs and latest psychological testing results. Now, I do know that these things cost an arm and a leg if i try to get them done myself, and if i could even get a single piece of information on how to access seemingly inaccessible parts of his brain it could be a potential dealbreaker in our current equilibrium. The icing on the cake…they would do it without sedating him so a) he would learn how to have a VERY difficult test done b) we would be able to see his brain response to anxiety(definitely not visible when doped to sleep) c) his brain response to speech / music (the actual objective of the study)
So I readily agreed.
Our first visit Sahil took an instant dislike to the MRI scanner. Two hours were spent in trying to make him lie down in place. He just knew that this thing was evil…but he did lie down for all of 30 secs at the end of 2 hours because he loves me(actually irrelevant) and he knows I never give in (more to the point) and there were GFCF cookies waiting if he did it (even more germane).
Ok so now i knew it wasnt going to be easy (I still lived in a world where wishing it were so made things happen effortlessly) Thinking cap on I figured that he needed to realise that an MRI machine was nothing too great, a piece of furniture albeit hi tech… just a nice cosy bed…
So I told Megha who was coordinating the effort to send me videos of kids going into the machine, each aspect of the procedure. We set up an appointment a week later and voila the watching of the video worked. Sahil lay down in the machine wore the headphones and the rest of the paraphernalia and allowed the monster to whizz him inside and…. then came the noises.
The noises were like a cross between loud jarring banishee and someone banging cast iron pots and pans in your ear. They made the claustrobhobic ride even less bearable. These noises were not something I or Sahil had been prewarned about or bargained for. We were not able to go through with the full fledged five MRI sessions. We did however by the end get a 5 minute structural MRI done albeit slightly blurred because he moved a little at the closing stages.
Third day Sahil was amazing and brave and ofcourse greedy. He knew that if he got it right even a bit, he got chips and cookies and juice. With a display of an amazing amount of self control we got 4 more MRIs done. In each case there was a slight movement after a few minutes of the MRI. Megha checked them out and a few days later told me that two would have to be repeated. Since we wanted absolutely accurate scans I took Sahil a couple of days later and he repeated the two scans, he even did the structural MRI which had been a bit blurred on day 1 and we finally did an extra MRI which would give information on connectivity of the various parts of the brain. And yes, again we saw the victory of greed over anxiety!!!
Still waiting for the results to come in. Megha will help me interpret them and then am planning to also show them to a neurologist. Hoping that this will be a pivotal piece in the puzzle we are trying to put together.
The learnings from this for all you guys:
Be prepared in all aspects- flying by the seat of your pants does not help either the parent or the child with autism, in a difficult situation.
Prepare your child using the best materials possible (Photographs, videos, drawings, stories)
Have your reinforcers ready (This has to be stuff he would willingly die for)
Be patient (I didnt use this- but if this was an ideal world…)
Be positive and reinforcing for the slightest movement in the right direction.
Do not, repeat not use force(even if I had wanted to…Sahil is 5’7″ at 13 and I am 5’2.5″ at 43). He is only going to get bigger and me.. I’m only going to get smaller.