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Entry #3: Butterfingers

How Hypotonia Affects My Daughter's Fine Motor Skills and Impacts Our Entire Family

The above picture is a great way to start. My child proudly holding up what would be a simple drawing for the average nine year old. "Look mommy! I made a phone!" She is totally unaware of the large pen mark on her face. Most nine year olds could efficiently hold a pen to a piece of paper and probably would have done that multiple times with many colors, creating a rainbow of delight. But we are talking about a child with a brain injury which affects her ability to use her hands. 

My child has lots of issues, and I could write a dissertation on each of them. Hypotonia I could probably right a book on because it affects so many of my child's functions! This diagnosis affects all of the muscles in my daughter's body. They are so low toned and weak that it disrupts the way her brain and nerves interact with her muscles. And that's every muscle... even her digestive tract. I won't hold you long enough to discuss it all. I'll break it up and only talk about her hands this time. 

At her eighteen month appointment, my daughter was officially diagnosed with hypotonia. She often held her hands curled under and flapped them wildly when she moved her arms. She was not yet walking and her knees bent like a flamingo when she stood. She wasn't talking, but she babbled. She was not consistently eating solid foods, and while she would drink her juice from a sippy cup, she demanded formula in a bottle after all meals, before a nap, and at bedtime. She couldn't stack blocks or hold a ball. She pounded happily at Play-doh but never managed to change the shape of the blob in front of her. She was immediately given a referral to Kennedy Krieger, and fast tracked for services.

It's now about eight years since my daughter started at Kennedy Krieger and we're walking to her occupational therapy appointment. She's got her headphones on, bopping to her favorite Taylor Swift song, cradling one of my iPads in a case. As I open the door I hear the dreaded smack of glass shattering against the pavement. I take a deep breath and turn around. I don't know how the iPad slipped from its case, but my daughter quickly scooped it up. She plugged in her headphones and her favorite song was still playing. "It's okay, mommy! It still works!" I want to tell you that this was the only time she's dropped my iPad, but both my iPad and iPad Pro are currently being held together by packing tape. I haven't returned to the classes I took at Apple because I'm embarrassed to go into the store with my equipment looking like this. I couldn't tell you the last time I had $50 to pay my Apple Care deductible and get them fixed. 

My daughter has butterfingers. She has poor whole hand grip, terrible finger control, and her left hand is so much worse than her right. She cannot fasten buttons. She cannot tie shoes (although she's very close). She cannot properly use eating utensils and will readily dive into a hot bowl of chicken noodle soup with her hands. Most people are appalled watching her eat anything, unless they've just gotten used to my daughter and love her anyways.

And that's after six years of occupational therapy at Kennedy Krieger. Six years of squeezing silly putty, using pincers to remove objects from sand, practicing letter formation with shaving cream, using redispace paper to redirect her handwriting, shaping moon sand, trying to use scissors, painting, cooking, mixing soap, and making crafts. After six years of her fine motor skills testing well below age appropriate, we can now say this is an area of her brain that is not developing and probably impacted by her premature birth.

Cue the County... sort of. To be up front, I had to call the county and request an IEP for my daughter because it was clear she would need assistive technology and academic accommodations to continue performing at her best academically. I called in December after her occupational therapist and speech therapist both recommended I start the IEP process. The County demanded a classroom observation, and that her teacher complete a thick packet. Her teacher completed that packet in record time, but the County Observer... He took three weeks to schedule (and reschedule) his observation. And he didn't show up until I threatened to call our County's PTI.

Two weeks later, I was called into what I thought would be a meeting to set out my daughter's educational plan and related services. Instead, I was directed to one sentence in her speech report that stated she was inattentive during the exam. "How do we know your daughter's falling grades aren't due to her not paying attention in class?" the head of the team exclaims.

"Because you have a nineteen page occupational therapy report proving she has issues with her fine motor skills among other things that impact her academically and the vast majority of her speech report demonstrating a language processing disorder." I say this and it sounds sane to me that a child who has issues holding a pencil might have issues writing an essay, but common sense does not win this time.

"We have to do neuropsychology testing! It could just be ADHD!" The same teacher claims. 

"I don't deny my child has ADHD, but she also can't hold a pencil. You can't put in an accommodation for her writing?"

"I'm not going to make any decisions until I see a neuropsychology report." And just like that, the meeting ends without my daughter receiving anything but a promise to review her case when she receives a neuropsychology exam. It was scheduled two weeks AFTER her school year ended, and only days before the school year ended for public schools in my county. Her IEP team was hoping she would be diagnosed with ADHD, so they could recommend medication and deny other services. The evaluation proved my daughter has a brain injury, needs an IEP immediately, that included dedicated speech and occupational therapy integrated into her school day provided by the state. She was diagnosed with ADHD, but with language stressing behavior therapy as the preferred method of addressing the issue. I couldn't have been happier to inform her IEP team.

The voice over the phone dropped as I read the preliminary report and informed her that I scanned and faxed the document straight to her inbox. Unfortunately, the preliminary report is not the official diagnosis...

"So, when will you receive the official report?" the intimidated voice asks.

"In thirty days. They always review the results discuss them among peers, then write their final conclusions."

The voice suddenly perks back up, "Oh! There aren't thirty days left in the school year, so we'll take a look when you have a report and school resumes." You heard it here, folks! Instead of providing needed services this year or make a plan for next year, my county has decided to wait. I don't let the lack of services stop us. Her teacher allowed us to turn in video projects instead of written ones. That helped my child better demonstrate her knowledge of the material. It was far higher than how she was testing. Below is one of her science projects for a nutrition unit. She got an A on this and every video project since.

My Daughter's Nutrition Project

This is one of the ways my daughter turns in homework and projects. Her teacher was very creative in helping her conquer her disabilities.

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Entry #3: Butterfingers
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