Any of you who know me, read my blogs, or know my Lizzy... you know it's been a journey. From a very young age, she's been, well, different.
We finally have a diagnosis of sorts. We FINALLY got a full analysis from OHSU (Oregon Health Sciences University) 's CDRC (Child Development and Rehabilitation Center) through the University of Oregon. This is where we've been through eating therapy and Occupational Therapy. This is where I went in desperation when she vomited up everything, made a scene in gymnastics, couldn't use toilets, freaked out about hair dryers and hand dryers and auto-flush toilets and auto paper-towel dispensers.
It took hours, that analysis, and she was exhausted. She was at the height of her self-stimulatory behavior. They were dismayed by it and Mike and I were at a loss.
ADHD and SMD. Attention Deficit Hyperactivity Disorder and Sensory Modulation Disorder.
"She's not on the spectrum"... the first words the therapist uttered. Mike said he knew it. I was surprised. I'd always thought she was. But then they mentioned the Sensory Modulation Disorder and I learned about the symptom overlaps that made me wonder about her being on the spectrum. Sensory Modulation Disorder is
" is one specific type of Sensory Processing Disorder (SPD). Sensory modulation refers specifically to the brain’s ability to respond appropriately to the sensory environment and to remain at the appropriate level of arousal or alertness".
It's separated into over-responsivity, under-responsivity and sensory seeking... she is the latter two.
Under responsive:
- may stuff too much food in mouth
- may not notice messy face, hands, twisted clothing
- often appears to be daydreaming or unfocused on what is going on
- asks “what” a lot even when hearing is fine
- may be overweight
- high pain tolerance or may not seem to notice cuts and bruises
- low muscle tone, may slump, slouch, and lean in chair or desk
- toe walking or awkward gait
- clumsiness
- poor fine motor skill development
Sensory Seeker
- always in constant motion, may “crash” into walls or floor on purpose
- may toe walk, or may run/jump/skip everywhere rather than walk
- difficulty staying still in seat
- touches everything, may bring everything to mouth
- plays rough
- poor attention span
So there we have it. That's my girl. The ADHD is a bit easier to tackle. Kinda. It's been a bit of a roller coaster trying meds, but we seem to have found something that works. It's out of her system quickly, allowing her to start to "notice" the difference so that she can gain tools to self - manage... maybe even not need meds when she's older. She's making great strides in school as far as finding tools/tricks to pay better attention, use lists and reminders to stay on task. At home, I've created a dry-erase chart (colorful chart printed on paper and put in one of those plastic sleeves you use to cover a report) with her "getting ready" items like wake up, make bed, get dressed, brush hair, grab backpack and lunch, etc. Then I don't have to nag her and she isn't frustrated. I just ask her to check her items off the list. I've created one for when she comes home too. I know these lists. They are a tool. I still use these kinds of tools myself. When I pack, when I get to work, etc. Otherwise, I won't complete a single task. i won't, I'll jump from task to task.
The SMD is more difficult. This is new territory for me. I will have to find out the therapy or exercises or tools or WHATEVER I can to help her sensory issues not impede her life. She's already developing some on her own. Perhaps it comes with age. Or with HAVING to cope. We had a weekend away with her Girl Scout Troop. I was TERRIFIED. But she cleared her place without being asked, she separated herself and just drew or read when she became overwhelmed. She said please and thank you and didn't play too rough with the others. She was easy going about any changes in plans. It was a heavenly weekend of "okay mom" or "whatever, mom, I'm good". And at school she is becoming very cognizant of when she NEEDS to be alone. She understanding that she has to develop coping skills for some of her issues.
Sometimes it makes her stand out. It makes it hard for her to make and keep friends. It makes her seem like a "weirdo". She can often appear hyper, clumsy, careless. She can play too rough. She can anger too easily. She can be a "bull in a china shop". She's becoming self conscious about being overweight. I'm trying to help her with the food stuffing and clumsiness, but struggling not to feed the poor self image she has because of it. I'm trying to focus on habit (put your fork down between bites, walk away and only come back if you're truly hungry and not just eating to sensory seek, slow down and breathe and watch your body so you don't bump into people) instead of the end result (eating too much or being clumsy).
She was discouraged when we first talked about that analysis and when she knew we had to meet with her teachers and counselors about it for a 504 Plan meeting at school. But I told her, and I firmly believe, that her "burden" can be her strength. I told her God gives us all a suitcase to start out life with and some get heavier ones. She got a heavy one. But the blessing in that is... she'll be stronger because of it. She'll learn to handle more and juggle more and multi-task and analyze because of it. It's the hyperactive "weirdos" who rule the world... not because they want to. THEY HAVE TO. To contain that energy, to sharpen that focus, to feed their senses.
She's made great strides since then. And like I told her... there always something to be thankful for. That heavy suitcase she carries? It comes with some AWESOME qualities. That's where I get to the lighthearted part of all this. The Terrifying words. My daughter has an AMAZING vocabulary, but it's not that. It's how she expresses herself and how it makes me just LAUGH at my terror. Here are some of the best:
"I may or may not have..." These words are basically the lead in to Lizzy diming herself out without thinking she is. As in "mom, I may or may not have just spilled paint all over the floor" or "I may or may not have hit a girl back in line today when she shoved me". Or, "mom, I may or may not have had an Oreo even though you said no dessert" It KILLS me. I crack up every time I hear "so mom... I may or may not have...". Please understand there is no may about it. It means she has already done it and is hoping she's not in trouble.
"Don't come in here"... My daughter is not subtle or sneaky. She lacks the ability. Mostly because she's so damn blunt. So "don't come in here" means there's something she's done that she doesn't want me to see. Due to her under-responsivity and sensory seeking nature... Lizzy is a mess maker. Fairy potions (aka horrible mixes of make up and dirt and shaved crayons and paint and...) nail painting, wall coloring, etc. are her constant messes. And because of this I have a rule: before any fluids or tiny, messy things like glitter are played with, she must ask permission. My answer is usually yes, because I believe messes are healthy. I just want to prepare for them. Lay out plastic Get a tarp. Buy a Hazmat suit. You get the idea. So when I knock on her door and it immediately is jerked open just enough to reveal her determined little face saying "don't come in here" I know that means she has forgotten about my rule.
"I don't want to talk about it right now". This means she's hoping I'll forget about something she's done that has some negative consequences. It's incredibly hard not to laugh and to keep to my discipline when her little face darkens and she says "I don't want to talk about it right now". For example, I got a note from the teacher that Lizzy threatened a little boy who is constantly tormenting her and she is constantly returning the favor. So I wanted to explain to her that while he has NO right to harass her and he definitely has some issues too, she wouldn't have been in trouble had she said "get away from me, I don't want to be around you". It was the choice of words "I hope you die" that got her sent to the principal's office. So I tried to calmly talk to her about word choices and threats and it was met with "I don't want to talk about it right now". I pointed out that that meant we still need to talk about it later, at which point she said "NO! I don't want to talk about it EVER". And then I had to pull out the baby-playing-hide-and-go-seek analogy of, just like a baby thinks if they cover their eyes and can't see you, they think you can't see them, you think if we don't talk about it, it will go away. She was utterly stunned that I had figured out her clever plans so easily. We talked about it. She wasn't happy, but sometimes, life is hard, you know?
"okay mom...what? okay, sorry, I'll need you to repeat that". If you read the part about under-responsivity, you will see they often say "what" even though their hearing is fine. This is Lizzy. She gets lost in... I don't know... Lizzy-land? I don't know where she goes. I understand getting lost in a book. I do that. But she gets lost in books, TV, music and just... her own head. So she is constantly saying "okay...mom" as if she has heard me, only to have to come clean and say "what? okay sorry, I'll need you to repeat that". This is something I've trained her to say because I GET LOST TOO. I know this. In class, at work, mid-conversation... I disappear. And then I snap back and am so embarrassed, I pretend I was listening. So I taught Lizzy it was more polite to say "I'm sorry, I need you to repeat that" than to pretend she has heard someone and is just choosing to ignore their request. It goes like this: me- lizzy pick that plate up and then go grab your towel and take a shower. lizzy -okay mom. 5 minutes later, no movement. me- lizzy did you hear me? lizzy- okay mom. me - okay mom, what? what did I ask? lizzy - what? okay ,sorry, I'll need you to repeat that. mmm hmm! I thought so. I KNOW when she spaces out. I do it too. I just need her to admit it so she can get better at developing good tools. In the meantime, she cracks me up with this.
I'm learning not to despair folks. I'm learning to laugh with the bumps in this road. She may have a heavier suitcase to carry. She may have a LOT of work ahead with her sensory issues so as to "cope" or appear "normal" or to "fit in". I may have a lot to learn about how one approaches a little girl who absentmindedly stuffs her mouth because the sensation of biting down is satisfying, who touches literally EVERYTHING around her in a store, who I constantly have to remind that one does not put coins, pencils, earrings or toys in your mouth. But I also have a little sunshine, mermaid, fairy of a best friend in this little bundle of misfiring senses.
And I may or may not be thankful for the funny, magical, messy, creative, amazing fairy that is produced when you cross ADHD and SMD. Okay, I am. :)
