We have observed another tanking in Matt's progress and behaviors. It is so incredibly frustrating to be on this roller-coaster sometimes. Just when I start to think that "we're getting the hang of this" and walk with a little more spring in my step, a giant cloud of doom takes residence directly over my head and laughs (yes, the cloud can laugh....with that maniacal laugh that Blake Shelton uses on the voice when he steals someone directly from Adam Levine) before dumping large amounts of humid rain on my freshly flat-ironed hair. It's a bit of a bummer, to say the least.
Behaviors are resurrected from Matt's past evil phases--I'm convinced he looks back and recalls those that were most annoying and brings those specific ones back to life. Right now, he is scratching like a large cat with razor nails that I cut every five seconds but still, somehow, gouge flesh. His favorite is to take his hands up the back of my shirt, find my bra strap and grab that, snap it, and then scratch his way down...or go down the cleavage--that's a fun one. He is screaming with this deep-throated, loud noise that it literally so painfully harsh that it is literally causing vocal nodes. He swipes ("swiper no swiping") things off counters, tables and other surfaces where they belong and are sitting nicely, doing no harm to anyone. This includes food (plates of it), pots on the stove that he swipes across the stove and onto the counter, papers, computers....anything on a flat surface that with a large swipe of his arms will do maximum damage. He loves to bang things, including the oven door. Lets talk about how fun that is when I am baking. Pantry doors, fridge, dishwasher and toilet seat are other favorites. Today he banged his glass so hard on the counter that is shattered into a billion shards. Talking has become impossible unless all of your attention is directed at him. That makes for a really productive conversation with other human beings--and eyes on Matt is not enough. He's no fool. If the topic strays from one directed at or for him, your eyes seek the eye contact of another human being, or you happen to laugh/comment on something happening within earshot, Matt is mad....and thus emerge all of the above listed behaviors, most especially the FACE swipe (don't forget the razor nails). That's a fun one. A small child grabbing your face with whiplash intensity, forcing you to look him in the eye and attend to him and him only. Really inspires loving, tender experiences.
He is happy when he has 100% of an adults attention, when you are wrestling, tickling, or throwing him around, or when he is reading a book with you. Even then, he'll lunge at me with love, but such brute force that I have been knocked over more than once. I need a clone in a protective suit of some kind.
Needless to say, this has taken a toll and I am desperate for answers....again. I feel like we took a little break from all of this when he was in his good phase. The timing was ideal (and probably somehow related) because we were dealing with his knee surgery and recovery, and because I feel the need to compartmentalize our drama, I could not have wrapped my head around this in the way I need to back then. Well, here we are....and my head, heart and soul have started to give me a message that has left me a tiny bit confused. I feel like we need to look at Matt's brain.
Autism doesn't fully explain Matt--it explains only some of his behaviors and there are a few things that are so "not autistic" that it leaves me a bit confused. I know...it's a spectrum. I get that. You know one kid with autism and you know one kid with autism. But my kid...my Matt....has something more going on. His intellectual delays are extreme. His ability to retain and process information is severely lacking. His challenges, I feel, are more related to something going on in his brain than autism.
I started this journey when I pushed our neurologist to answer the questions I didn't know to ask--I basically asked what I don't know to ask that might help give us a clue or insight into what is going on with Matt--that might explain him and some of his struggles in a way that autism doesn't. He did make some very insightful discoveries as a result and noted, in particular, that Matt might have an abnormally developed brain, specifically in the areas responsible for speech and cognition. So I've had this strong urge/desire to look more into Matt's brain--to understand it a bit better. However, I feel paralyzed because I don't really know where to start. Google: brain problems?? I honestly haven't even know what to do.
About a week ago, a friend of mine sent me a link to a Ted talk, the premise of which is if you want to understand a kid with a developmental disorder, you cannot look at behaviors....you have to look at the brain. DING! Totally resonated with me. This is that talk. She talks about a specific way to read and interpret EEG's such that you are able to accurately diagnose what is going on in the brain rather than relying on observable behaviors to make that diagnosis. So I start thinking, "hmmmm, how can I figure out if this is legit" and start asking questions of Matt's "team" of medical professionals. He has an appointment with neurology at the end of the summer and I'm going to do my homework to prepare for that to make a case for this kind of research into Matt's brain.
Yesterday morning, I had a meeting with Matt's developmental behavioral specialist. This woman is quite the genius, I tell you, and I was really looking forward to meeting with her. When I am at my most desperate, she is a little breath of encouragement and answers. As we were getting ready to get the kids off to school so Matt and I could head to her office, I got a phone call from a number I didn't recognize--right in the middle of the chaos. I typically ignore these calls, but for some reason hit answer on my watch before I could even stop myself. It was a friend of mine that I have known for years and years, but speak to only occasionally when we pass at a church function or run into each other around town. She asked if I had a moment and I almost said no, but kind of gave her a "yes, but literally only a minute." She was calling to ask whether we had ever done a brain scan with Matt called a SPECT scan. They were considering doing one with her grandson (I think....maybe her son???) and wondering whether it was worth the thousands of dollars out of pocket that it would cost them. He has ADD and struggles a bit, and this scan was recommended by a psychologist who noted it might offer insight into what parts of the brain they need to focus on strengthening, slowing down, etc. and how to approach med management, therapy, and so on. She thought that we had, perhaps, done this or considered this for Matt. Nope! BUT I was SUPER interested in learning more about it as it seemed like exactly the type of information I was looking for. I asked her for a little more detail and promised to ask Matt's specialist during our visit an hour later and then call her back.
So we head to Margaret MacDonald's (specialist) office...I have a list of things to discuss on a sticky note and in my head (as well as a prayer in my heart). I asked her almost immediately about this SPECT scan and she replied that they had done one with her daughter. It had been incredibly helpful as they discovered a serious brain injury that guided and helped really focus their therapeutic interventions, leading to a girl that is mainstreamed and doing quite well today. Not that she doesn't have challenges, but understanding the area of her brain that went through this trauma helps Meg to understand what it is she might struggle with. She then said, "we should absolutely do this for Matt. This needs to be our next step." OK. So I am not one to be easily persuaded to do something this dramatic very easily, but I am at the point where we are way past explaining this as coincidence. We also talked about my next meeting with Matt's neurologist and she volunteered to attend, research this Ted talk in advance, and then we'll figure out how to approach it, with SPECT scan results in hand to help.
The conversation was super intense, fast-paced, and filled with challenges as Matt was his usual anxious self in her office, scratching my face and screaming (literally--that gutteral vocal-node-enducing scream) his head off the entire time. I got into the car and started to drive home, amazed at what had just happen. And when I had a chance to sit for a few seconds in relative peace during the drive, it hit me like a bomb that God had just handed me a pretty huge answer. I kind of turned my gratitude upward, if that makes sense, and almost had this feeling of a smirking "your welcome for that one."
I then started to think about expenses and how this would be a biggie...and remembered I was going to get lasix--I had the consult scheduled for the following Wednesday--and the price was about the same as this scan. I called and cancelled my eyes, given that this was absolutely more important. Budget problem solved. Now logistics....
When I called the clinic, I found out the details of the visit--it takes place over a couple of days, involves a comprehensive medical history, cognitive testing, and these scans. I also found out that the child has to lie completely still for 18 minutes during the scan. Bubble popped. I almost wrote pooped. I guess that would be appropriate as well. I was SO sad. I told him that was pretty much an impossibility and asked if we were hosed. He acted like we were for a second...until I mentioned sedation. He said they DO have a sedation option, but he didn't think we would consider it given that it is only offered at their Orange County location and would require us to fly to CA. Done. Not a problem. So we have started to look at the schedule and are hoping to get this on the calendar for May.
The reason I detailed all of this is because I wanted to remember. I feel like feelings of hope and that sense that you are being totally cared for--that there might even be an angel or twenty watching, thinking, working, helping--can be fleeting. I do not want to forget that undeniable sense that we had a prayer answered and that our path was being guided. If this does nothing more than satisfy a curious mother, then I am grateful. But I kind of have a feeling it might do a little bit more than that. Knowledge is power....I have said SO many times that I wish I could look inside his head. Well....we're going to try.
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