Tuesday, November 29, 2016

Asking for help

*deep breath*  I'm about to share more than I am usually inclined to do in so public a forum. Bear with me.

Dylan was in tears when I met him after school today.  That isn't all that unusual these days, unfortunately.  Some kid in his class had told him, just before the bell rang at the end of the day, that he didn't matter. I don't know what the context was, and he told me he knew it wasn't true, but it still hurt his feelings.  Then he said, "I hope Ammon is back tomorrow. He's my only friend."  We've heard that refrain a lot the last couple of years. He's mostly kind, and quite sensitive, but unusual (and obsessive) in his interests, and somewhat awkward, meaning he is isolated a bit, socially. Despite high standardized test scores, he struggles in school, and was in tears multiple times the week before parent-teacher conferences, frustrated and embarrassed about the poor grades he assumed were inevitable.

Dylan has always been unique, perhaps a little quirky, and those closest to our family have always known that and it was just Dylan, no big deal. It certainly wasn't a problem, or really even that far out of the ordinary.

As a baby, he was a dream: if I wanted to hold him, he was happy to be held and snuggled. But if I had other things to do, well, he didn't so much mind being ignored for long stretches of time.  Even though every one of our other babies rolled, scooted or slipped off our big king size bed at some point (yep, I'm that stellar of a mom), Dylan never did. He was weirdly aware of edges, so he would scoot to the side and just look over the edge and whimper until someone picked him up or moved him back to the middle of the bed.

By the time he was approaching his first birthday, he was obsessed with matchbook cars. He had one in each hand everywhere he went, all of the time. He loved to drive the cars around, but the cars needed tracks--something relatively narrow with boundaries, such as the window sill, or the trim on the coffee table. If he couldn't find a track, he'd make one.  The example that always stands out in my head, because he was so little, was one time, he was sitting on the floor of our bedroom, about three weeks after he turned one, and he picked up Doug's tie that was sitting near him, fashioned it into a rough circle, and then drove his cars on it. His favorite game was his car track through the living room: we had long windows with low sills he could easily reach. He would find about a half a dozen of his cars, line them up (usually according to size) on the piano bench, and then pick up the first one. He would drive it down first sill, then the next on the north side of the living room; then he would drive it on the narrow edge of the TV stand in front of the TV; next, he'd move it to the center of the room and drive it around the border on the coffee table; then he'd take it and drive it down the back of the couch on the south side of the living room, and then along the window sill on the southeast side of the room, and finally park in on the bookshelf next to the window.  Then he'd go to his line of cars, pick the next one, and do it all over again.  He would do that, uninterrupted for sometimes hours at a time if he was allowed to.  He loved it.

Whenever he was done with his cars, he would line them up neatly somewhere, hoods aligned and usually organized from smallest to largest.  He loved to play with blocks or megablocks, but would generally sort them by size or color before he started to build anything.  During all of this, he had no language.  He had scarcely any words before his third birthday, but by 2 1/2, he knew the entire alphabet.  He could recognize every letter and tell you what sound it made, simply from watching his sister play alphabet games on the computer.

He didn't pay attention to people very much. He was very interactive with me and Doug, and his sister (who sort of made it impossible to not be interacted with.  There was a reason we considered adding an exclamation point to the spelling of her name: Keilana!)  If Doug and I were both gone, he seemed to somehow determine who was the primary caretaker adult in his vicinity, and find that person if he needed something, but otherwise occupy himself with his toys and mostly ignore everyone. He played with toys in their intended way in a very focused manner, and gave most of his energy and attention to that. He interacted with Amanda, and in a tender mercy that I still can't explain, he played with Conner. They were so little, at an age where most kids engage in parallel play, and with all Dylan's quirks, they truly played together, babbling at each other and moving in tandem when they were in the same house.  After Conner was gone, he was often a part of Keilana and Clayton's games and activities, but just as often they were playing with each other while he did his own quietly contented thing.

When he was a toddler, I had to take a niece to a doctor's appointment for a very contagious illness and asked a friend to watch my kids so that they didn't have to be around her.  When I went to pick him up and asked how it went, she said he had just mostly stayed in that spot, driving the cars over and over, and didn't really respond to her much when she tried to engage him in other things.  She asked, "Have you ever thought about having him evaluated for autism?"  What you need to know about this woman is that she is a dear friend, one of the most grounded women I know, and mother to five children of her own, including a daughter Keilana's age who has profound autism (at 12, she is still nonverbal and performs almost no self-care).  I'd had the thought.  He functioned mostly normally, and whatever his uniquenesses were, they didn't seem to be getting in the way of his development.

As he got older and hit preschooler ages, the language came, and with the language he became somewhat more social. He started to notice and interact more with his cousins and with friends.  He still spent a lot of his time solitarily, but when we went out or had people at home, he spent more time with other little boys, and he began to be a more active participant in Keilana and Clayton's games.  It was becoming increasingly obvious that he was sensitive, both physically and emotionally.  At times when he did decide to interact, he was easily hurt in a way that his sister never had been, and sarcasm  seemed almost impossible for him. He was so young that I didn't think much of that.  He was fairly particular about the clothes he liked, but he had trouble communicating that verbally, which resulted in frequent stripping down to his skivvies.

Eating has been a disaster pretty much since he started solid foods.  For the first few years he was eating real food, it was all but impossible to get him to eat anything other than refined carbohydrates: crackers (but nothing too flavorful), chips, cereal, bread (he'd eat jelly, but not peanut butter, until he hit the point where he'd eat peanut butter, but not jelly, and then either one, so long as not both on the same sandwich), and pasta sans sauce.  So I bought no cereal, bread, or crackers that weren't whole-wheat, bran-loaded cardboard in an attempt to get some sort of substantive food in him, and that worked for a while. I thought he was just being picky and stubborn, so one night when he was three, we had chicken and some sort of blah vegetable (I can't remember specifically what), and I told him he couldn't have anything else to eat until he ate his dinner. No spices, sauces, or real flavor of any kind.  For 36 hours, my 3 year old ate nothing.  And didn't whine, complain, or throw fits or anything like that.  Just quietly starved himself. If we tried to force him to eat, he would take 10 minutes to get down a bit or two, and then he'd vomit.  I realized at that point that we were dealing with more than stubbornness, and I quit fighting.  As he got older, his palate expanded--a little.  He'd still have pizza, chicken nuggets, or crackers for every meal if we let him.

As he's grown up, he's been able to channel his energies more consciously, he has seemed more "normal" in some ways, and that much odder in others. He can spot, name, and describe dozens of species of birds, and love wildlife biology in general.  He can classify hundreds of Pokemon without breaking a sweat, and generally loves any activity where he can sort and classify, and loves to expound on those things.  But getting 10 minutes worth of math homework done every day is nearly impossible.  He built a Spiderman web across the ceiling of his room using Legos and connects (it was rather impressive) but after five years of doing it every day, he can't do a decent job washing a dish to save his life.   He finally lets us give him a haircut without having a meltdown, but if the cat accidentally gets a claw across his foot when they're playing, it sounds like his foot has been lopped off with a machete.  A few months ago, he had to have a simply venipuncture blood draw for some lab tests, and I had to hold him down with help from a lab tech while the phlebotomist drew blood because he was in so much pain and so panicked.

He has a lot of behaviors that look like ADHD: very inattentive in class, needing frequent redirection from his teacher, you give him one task to complete, and by the time he's walked 10 feet away from you, he's forgotten what it was, etc.  We took him to the doctor for an initial evaluation, and his doctor almost had a meltdown at the whole idea, and walked into the room and started the conversation with a lecture about the problems with putting kids on amphetamines. I interrupted him and told him I was looking to get an IEP, not a controlled substance, and this was just an initial evaluation to see where were at and what seems likely/not so likely.  I was so annoyed at him that we never bothered to do the follow up at the end of last school year, and that doctor has moved now, anyway.

I talked to my mom (a special ed teacher in another district) about possibly finding names of therapists who specialize in kids with ADD and/or ASD.  Its hard to know what his parameters are--whether we're pushing too hard on things he probably can't do right now, or letting things go that maybe he is capable of.  It can be tricky to know the best ways to help him, because he mostly fits under the umbrella of "normal".  But school is a struggle, and he is old enough now to recognize that he's different, and there are kids that don't let him forget it, anyway.  I want my kids to be able to reach his potential, I want him to be happy.

From the time I was 14, I was inexplicably convinced that I would have a special needs child someday.  When Dylan received his baby blessing at 7 weeks old, I was caught off guard by some of what was said, and I wondered if maybe that prompting came to prepare me to be his mom.  That being said, these weren't the needs I was expecting, and I hope that, with some help, his dad and I can figure out the best way to help him harness the power of that marvelous mind of his, and his sensitive, gentle spirit. 


Becky said...

Becky, I started reading this post and very quickly, I heard myself in your words about my oldest child. We experienced many of these same things with my first child when she was very young and when she was three, almost four years old, and she had had a complete melt down in an IHOP over eating chicken strips, I was finally ready to hear some advice from my mother, who is a special education teacher. She advised me to get Nicole evaluated for ASD. Nicole has high functioning autism and her diagnosis was the best and hardest thing that has ever happened for me. The best because it put a name to all her struggles and obsessions and social anxiety and got us in to the therapy we needed to be able to help her. The hardest because it is heart breaking to realize that your child, your perfect unique brilliant child will face things in life that you don't know how to help with and you feel powerless. Nicole wouldn't eat in her early years and her diet was extremely limited as she has taste sensory issues. Some foods actually cause her physical pain. But, after a lot of therapy, Nicole now eats many foods and will taste every thing presented to her. Nicole also did not sleep through the night her first five years of life and we then discovered that her body does not produce melatonin. Happily, she now sleeps most nights with a sleep supplement. What I am trying to say is you are not alone and all is not without hope. With therapy and training, things do improve. My youngest son was diagnosed six months ago with a lower functioning ASD and I feel as if we are starting over on many things as we work with him to teach him to speak and eat and be okay with being touched. My love and my hope is with you that you find the things that Dylan needs and that you have the inspiration to help him find the tools to help himself. Any time you want to talk, please, contact me. This is Becky Derington Kimball. I know it has been a while, but I think of you often. Reckalie9@yahoo.com

Rebecca Susan said...

I remember when you wrote about finding Nicole's diagnosis, but I didn't realize that one of your boys was identified as well. That's a lot on your plate!

Thanks for your kind words and offer of support. We have an appointment with a new pediatrician next week so we can start over after the disaster that was our most recent doctor encounter. He was so flipped about ADHD, I didn't even bother to broach the subject of autism. I've worked with this pediatrician a few times when taking care of her patients at the hospital, and I really like her and am hopeful for a much different experience. Western MT is still a small community, relatively speaking, so I already have some good leads for who to turn to for the next step.

I hope things are going well for you in navigating this adventure with your family!!