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?
Hey De
Long time no talk!
Many of the things that you described sound(ed) like our son. After experiencing many of the same frustrations we hired a private occupational therapist who agreed (as we suspected) that he has sensory sensitivities and gave us some really good coping strategies. We’ve been very open with his teachers as well and received a lot of support from them. This year he has a teacher with a very structured teaching style and he is thriving, unlike the free-form play-based learning in the kindergarten grades.
If you ever want to compare notes/strategies, please don’t hesitate to reach out.
Thanks, Brenda. We’re actually on a waiting list for testing for Sensory Processing Disorder. We were told there’s only one occupational therapist in Essex County that is qualified to test for it. Long waiting list.
I think it’s wonderful for you to share your story because many other parents are likely in other confusing places.
Many kids are difficult to diagnose and often are given the wrong diagnosis at first.
One community I heard of a while ago used the term quirky kids to help group together families who are managing a range of behaviours.
I think it’s good for you to continue pursuing answers but It also sounds like you understand her needs well and you’re doing a fantastic job!!!
Thanks, Susan. That’s ultimately why I decided to finally publish this. There have to be other people who are lost out there as well.
I love the term quirky kids, it’s not one that I had heard before.
Thanks so much for the kind words, it means a lot.
Oh, sweetie, my heart aches for you! I went through the same thing with Jonathan. As parents, we KNOW when something is “off” with our children – even if the rest of the professional world refuses to agree with us. From the time Jonathan was born (literally!) until he attended kindergarten – I knew there was something. I researched all the things he did, the constant jumping and running and oh! squirrel moments when he was supposed to be doing one thing and something else caught his eye. He too was artistic and intelligent and creative and loved building things but Lord have mercy – at the end of the day, I literally collapsed into bed like a zombie from exhaustion. I talked to his pediatrician – she would not diagnose him until he had gone to school and the teacher “collaborated” what I knew was going on with him.
Jonathan is one of the only children in history I believe to be expelled from kindergarten after only two hours. The teachers were MORE than happy to complete the questionnaire from the doctor’s office so that I could begin getting him treatment and figure out what type of medication would work best for him.
You know your child best – research her symptoms that you see, cross-check with other diagnosis symptoms – and go to your pediatrician armed with this knowledge. Write down everything she does at home that causes you to believe she has a diagnosis. I had notebook after notebook filled with things like “Jonathan took a 15-minute nap and did not sleep again until 2 AM and then was wide awake again at 4 AM when he was just a year old! Write it ALL down because, in your sleep-deprived, chaotic, stressed-out day, you will forget something.
And if you ever need to talk – you can hit me up on Messenger or email me. I’m just a few keystrokes away with a sympathetic ear, something to make you laugh after a particularly horrible day, or just to offer a shoulder to cry on when you need it. Hang in there – it is a constant battle and a constant struggle – but so worth it. ♥ ♥ ♥
Though I’m sure it wasn’t funny at the time, I had to giggle a bit at the idea of being kicked out of kindergarten after two hours. I’m sorry you had to wait to get the school to collaborate to move forward with what you KNEW was going on with your son. How frustrating and exhausting.
A notebook is such a good idea! I feel very silly for not having thought of it. There are so many odd little things that my daughter does that we have begun to simply accept as normal. I mean we actualy say, “Oh, that’s just Gigi.” or “She’s just very Gigi.” When I do go to see specialists I struggle to quantify how she is different, to remember and list off exactly what is going on.
In the short term I wold suggest getting blood work done, and finding out if supplements could be used. My youngest is suspected to have ADHD, and we are also in a waiting period (at least our first appointment is actually in the books). The doctor suggested the blood work saying it’s a far cry from a solution, but the balance brought by supplements (in her case iron and vitamin C) could help.
Good luck on the diagnosis, from your story I am convinced there is one out there
On another note maybe talk to the school, it’s a stretch, but maybe they can help fast track an appointment.
My son will be 22 in June but mentally he is about 5. I understand all your frustration. His issues started becoming apparent when he was almost 6 months old but we didn’t get an official diagnosis until he was 7 years old. I’ll be honest, when I was told he had the genetoc mutation for Dravet’s syndrome I actually felt relief and vindication for a moment. His “misbehaviour” wasn’t because I was a bad mom who wasn”t trying hard enough to raise him properly. And i could tell all those people who told me “to just do this” to go stuff themselves. (Not that i ever did, my mom raised me to be polite)
I used to take public transit with him pretty often since i don’t drive and yes when he was little him trying to listen to someone’s ipod or try to go through their bags was “cute” but people really don’t tolerate it when it looks like an adult is doing, so no more bus for us. If daddy can’t drive or we can’t afford a taxi we stay home.
wow. I stumbled on your post at the right time.
My son is 11 and my husband and I have wondered about getting him assessed for…something.
I think deep-down we thought that the education system would make a recommendation but it didn’t happen. As of this week we are beginning on the same journey of discovery as you, discovering our options and how we can help him be his best self!