My Kid Has Special Needs, Sorta, Maybe

I am a pretty open book on this blog. I tell you guys a lot about my life and the lives of my family, but a large chunk that I’ve left out is how one of my kids has special needs. Maybe. Kinda. Sorta.

See, I haven’t said anything because we don’t have a diagnosis. For several years now I’ve suspected that my youngest daughter is something. I’ve thought that maybe she was on the spectrum. I’ve thought that she might have sensory processing disorder. I’ve thought many things, but have never had a solid diagnosis to back myself up, so I have been quiet. 

My youngest child is a joy. I once described her as “like Tigger but with hugs“. She is loving, gracious, smart, and funny. She is quick with a compliment. She is always worried about how others feel. She wants to help people. Ask her what she wants to be when she grows up and the answer is always the same, “A helper. I want to help people.”

Ask my daughter what her favourite colour is and she will tell you that she doesn’t have a favourite. She will likely go on to happily explain that actually she does have one, but it’s just for today, just for this moment right now, because she can’t choose just one colour forever. She overthinks it. She takes this question, all questions, very seriously.

She loves rainbows and rocketships. She loves anything to do with outer space, robots, or science. She loves her Fisher Price Imaginext dudes, which she proudly refers to as her “little guys”. For Christmas this year she asked Santa for “more little guys” or a robot.

She’s 9. She missed the memo on Imaginext guys being for 2 to 4 year olds.

She loves Paw Patrol and My Little Pony. She’s starting to read chapter books, but only really likes the ones with pictures in them. Graphic novels are a good compromise. Dog Man is, apparently, HILARIOUS.

My daughter is creative, so darn imaginative, and a great storyteller. She loves to create, to build things, and she also loves to pick things apart into tiny tiny bits.

I haven’t cut her nails in, um… six years? When she’s done picking at them there is nothing left to cut.

Gigi is clumsy and hurts herself almost daily. She comes home from school each night and lists off the times she fell or banged into something, as if they were the most important parts of the day. She is continuously sporting either a bandaid or a hole in her pants.

She has no concept of what kinds of outfits are appropriate for any given situation or weather. I constantly have to veto what she’s chosen. I have simply given up on getting her to wear matching socks.

For a few years now, she’s had a short boyish hair cut. She asked me to cut her hair short because, if it’s long enough to get to her mouth, she can’t help herself from constantly chewing on it. I bought her one of those special silicone necklaces for kids that like to chew and it didn’t last three days.

She’s in 3rd Grade and for the fourth year running, she’s one of the tallest kids in her class. She wears the same size clothes as her big sister, who is in Grade 6.

I sometimes wish she were tinier. If she were petite and could pass for a kindergartener the lisp and the constant hugs would be considered endearing. If she looked like she were five maybe folks wouldn’t stare when she starts crying and refuses to go to the washroom on her own.

Last summer we were at this end of year music class party for her older sister. It was a big crowded house party, with all of the teacher’s music students and their families standing here and there, and folks playing in the front room. My youngest daughter was up, down and all around. She wanted to sit and watch the musicians play. She wanted to dance on the staircase. She wanted to walk right in front of the musicians, get right into their playing space, again and again, without care. She wanted to go outside and see the cat in the driveway. She wanted more snacks from the kitchen (after she spilt the juice twice and dropped her popsicle on the back porch stairs). She wanted to go to the bathroom, but not alone because it was a strange bathroom and going alone would be terrifying.

I perched on the winding wooden staircase, staring down through the bannister railing at the musicians below. My nerves were on edge. I held on to my daughter for dear life. afraid she would fidget too much and take a tumble down the stairs. Afraid that if I lost sight of her even for a moment that she would be off out the front door and down the block and around the way looking for the cat we saw in the driveway when we first pulled in.

I felt like… I have a toddler here. A sweet toddler who wants to climb on your lap and hug everyone and fidget and dance and explore and check everything out. Except she happens to be trapped in an eight year old’s body. If she were actually four years old all of the adults in the room would keep an eye on her and understand her silly, toddler, behaviour. But because she looks like an eight year old (or heck given how tall she is, she probably looks like a ten year old), no one is going to get it. They probably think I’m some crazy over-protective helicopter mom.

How can I explain to everyone that my daughter is a preschooler trapped in a third grader’s body?

I haven’t talked about this on here because we don’t have a diagnosis. She doesn’t fit in a box. I can’t go and join in the chat for parents of kids with Autism, or ADHD or whatever, because she isn’t diagnosed, and it’s not for lack of trying (you can read HERE about the first part of our journey to find a diagnosis).

I feel guilty because at times I have wished, sincerely wished, that my kid had autism or any other clearly definable label. Something, anything, that I could research, talk to others about, figure out. I have felt jealous of the community that others have, when they can say “My kid has X.” and someone else can say, “Wow, so does mine.” and they can compare notes and talk about how they handle it.

Instead, we are in limbo. We are constantly reaching out and looking for answers and finding only waiting lists, red tape and run around.

For a few years now I thought, well we’ll get to the point where we figure out what she has and then I’ll talk to you guys about it on here. Yet here we are, still in limbo, and I’m sick of being quiet so I’m speaking up.

I am speaking up because I have discovered that parenting in limbo is HARD. Waiting. Being told she might have this or that to find it’s all dead ends. It’s nerve wracking. And it occurred to me that I might not be the only one, the only one left feeling half-guilty and wishing for a diagnosis for their kid.

So I am no longer being silent. Instead I’m yelling out into limbo to see who else might be out there.

Anyone?