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.
Sunday, March 6, 2016
Todd and I were on a short get-away to celebrate our 10 year anniversary this past weekend. We were with two other couples—some of our dearest friends—and this trip represented a reunion of sorts. We used to spend time as a group doing the most random things we could possibly think of. We would rotate who planned the weekend/outing and the other couples had to just go along with whatever they had put together. The more random, the better.
Though the weekend’s plans weren’t outrageous or all that random, we were reminded of why we love these friends. They help us not take ourselves too seriously.
Todd and I have a life that is FILLED. It is full and rich in the way those terms are typically used…for sure! But it is also filled….filled with “stuff” that is important, but tends to bring out the serious and structured side of us. We have a schedule that is planned out 6 months in advance (nature of the beast in his profession). We have therapies and activities and all sorts of projects and problems we are facing and fighting (nature of the beast when you have children). To some, we seem crazy. To us, this “filled” life feels normal.
However, we realized something—having a filled life with a lot of serious stuff can lead us to take ourselves too seriously. Never before in my life can I remember trying to consciously be fun or have fun or plan fun or add fun. It just happened. But now, I almost feel like I’m so focused on anticipating needs and making things happen that I forget to be and have fun. Is that a pathetic revelation? One of the things that drives Todd the most is his desire for fun—he is a fun seeker. I realized with a bit of a jolt this weekend that I am often a fun avoider when the “fun” requires spontaneity and flexibility. I think I have become so accustomed to “filled” that I almost fear the fun because it might mess up my schedule. OH MY GOSH. What has happened to me????
While walking through the shops in Carmel, Todd and I started talking about writing a book of all of the things that we have learned and experienced raising a child with autism and, we are discovering, a variety of other special needs. Todd asked me the “why” question—what would the purpose of this type of project be? My response was that I feel like “autism Mom’s” and other mother’s who have children with special needs (myself included) get caught in this trap of trying SO HARD to do what is right and best for their child that they lose balance and forget to live with and love the child that is right in front of them. I suggested that the “why” is to help other families, through our trips and stumbles as we learn this ourselves, realize the importance of balance within their own families—not neglecting the other family members because of a hyper-focus on the child with special needs. I think we can accomplish that by talking about what we learned (and the experiences that taught us), and how we applied that to our life as a whole—our other children, our other relationships, etc. We often get so caught up in advocacy, research, experimenting with different “treatments” and diets, therapy, appointments, observation, and just plain hard work that we forget to enjoy that child AND give our other children/family members the same amount or level of attention, in both success and failure, recognizing accomplishments with the same enthusiasm, grieving when they struggle with the same degree of sincerity, etc.
Here’s the connection: I realized that what I feel so strongly about—BALANCE—is the key to that philosophy and that philosophy is something I need to be doing my very best to practice day in and day out as I approach things with Matt. Part of that is that I need to enjoy my other children more. I need to make more time for fun with them. I consciously stopped doing daily therapy with Matt so that I could focus more on simply enjoying him because my every minute with him was peppered with “how can I squeeze in more therapy” and I was stressed out when I didn’t get it all in. Well, I’m looking at my other kids now and saying “how can I be more productive in my time with them?” every second of every day. Sometimes the most productive thing I can do with and for them is to just enjoy them—to have fun with them. Duh.
Time is the hardest gift for me to give because I feel like our time is so “filled.” It is also the greatest gift we can give our children. My goal is to reverse my “give me five minutes and then I’ll play” to be “lets play for 5 minutes and then I’ll try to finish this” so I’m sure the best use of my time is prioritized. How we use our time is the best indication of what our priorities truly are—are they selfishly spent on things that make me happiest (i.e. a clean house, organized closet, projects, etc.), even unconsciously? I have to give more than lip service to the idea that my children, next to God and my husband, are the very most important and precious to me and then do more of what makes THEM the happiest.
I have thought a lot lately about how Matt gives us a gift in his obsession with electronics because he keeps our entire family from becoming addicted to things that I feel are almost cancerous to family relationships. I internally applaud us for watching so little TV and for spending so little time on our phones and think about how much more connected we will be in the long run because we just plain have to “check our electronics at the door” when our dude is around. Maybe part of that is a way to make me feel better about what has been a HUGE struggle in our lives—his obsession makes our home life very challenging. It also makes going out in public hard as there are literally electronics everywhere and all impulse control goes out the door as he pick-pockets people and pounces on strangers in an attempt to steal their devices. However, we have our other demons and distractions. Shockingly, the good can distract us just as quickly from the “better” and “best” as total time wasters can distract us from that which is most important. Good for me equals planning, schedules, strict rules, structure. Better and best likely require a little more flexibility because it involves more listening, connection, and following the Spirit and less efficiency.
My commitment is to have more fun. I’m being serious. I need to chill out. Wish me luck.