Yesterday, we were with our wonderful home ed group. First at gymnastics then at the play group. Because of her erratic sleep, we don’t get to go as much as we like. But something happened then that got me thinking about the word…neurodivergent. (#NDivrg)
One of the little girls ‘melted down’ when she could not do something. Now this Little Red Ridinghood (you know me and confidentiality) is one of my favorites. When I am able to do arts and crafts with the children I delight in this child. The main reason being…she reminds me so much of PanKwake at that age.
Most people have heard the term ‘gay’dar, i.e. able to accurately guess sexual orientation. I have A-dar…I can rather accurately pick out a child on the spectrum…especially the high functioning ones. I think it is because my method of parenting is so much about PanKwake…learning the person, the triggers, observation. So it just becomes second nature with other children as well.
But I am always reluctant to ‘label’ or even mention my observations to parents. Unless I feel they really NEED help. In other words, they are not coping, not managing and need to get professionals involved. Then I gently suggest that they might want to talk to their GPs.
But this is NOT the case with this family. Because they home educate and because of this Mom’s child-centered approach, they are quite frankly doing better managing Little Red Ridinghood’s needs than most families I have seen WITH a diagnosis.
Yesterday, though for some unexplained reason I did what I usually don’t do…and asked politely (I hope) if she had every thought Red might be ‘different’. We got to talking from there. And eventually it got around to one of my least favorite subjects…society…
This wonderful and compassionate Mom said to me…Yeah but sometimes I wonder about getting a diagnosis. Just so I can tell OTHER people my child is not naughty.
Trust me…I understand this woman’s pain. I just KNEW since she was two that PanKwake was autistic (my child’s preferred terminology). The community nursery that she attended attempted to get us help during the crisis period of my own depression after my miscarriage. But because she was a girl and autism is a ‘boy thing’ we were denied.
It was not until I de-registered her from school that I got pushed towards diagnosis…by the home education officer no less. While his motivation and methods were less than honorable, it did get results…after two years of false starts and waiting.
But the cost of diagnosis was extremely high!
Being in the UK, I am not talking the £££ or $$$ kind of costs. I am speaking of the emotional ones. Since going through the autism and speech and language assessments, I have been able to get PanKwake to a doctor’s appoint once. I take that back…twice. First one was with her carer in London and almost £50 of prizes as bribes. The second was her Swansea GP…and I had to physical carry a kicking and screaming ten-year-old into the office.
Now PanKwake has the co-morbidity of epilepsy so she has been poked and prodded with electrodes since she was three. Loads of times. But it was the ADOS that broke her camel back.
She was not even able to complete the exercises…only about a third of them. When the psychologist suggested that Bat Man be the veterinarian for the role play, she flipped out. Bat Man was Bat Man. He was not a vet. She climbed under the table into a fetal ball and then ran out into the hall screaming for me.
Now I give the Neurodevelopmental Team at Islington CAMHS credit, they did exactly the right thing. First they ASKED me how it would be best to proceed. Suggesting that we could continue the process after a break. Then offering another appointment. After thinking for a moment, the doctor said…Let us have a look at the video. See if we have enough on there to make a diagnosis. She called back two days later…no need to bring PanKwake back for more ‘testing’.
But the damage was done. Even during the ensuing speech and language evals, PanKwake would climb under the table. Shouting loudly at the therapist, I’m a four. Leave me alone.
That was just it though…I had not waited for the diagnosis. I had researched and begun to implement coping strategies…without the Big A word. The therapist looked at me in shock the first time PanKwake used the Incredible Five-Point Scale so well to express her needs.
For many home educating families that is it…we do whatever it takes to help our children. We are accustomed to finding and utilizing information for ourselves. We just don’t need labels or interference from ‘experts’ because we know we are the best experts on OUR kids.
So here I was empathizing with this Mom but not really able to offer any suggestions. I mean I know before the diagnosis…even though I KNEW…I would never have just tossed the Big A word around to those pesky people…relatives or strangers on the street who thought my child was naughty and I was a bad parent.
But I did have her epilepsy and I used it. Once even telling one very nasty woman at the bus stop…My child has seizures in her sleep almost every night. She wakes up tired in the morning. What’s your excuse for being a (bleep)? Yes, I am a Mama Bear and radical about protecting my child.
So what to tell this Mom? While I am glad we have a diagnosis (it made a huge difference with PanKwake’s father), I know the emotional cost to the child…and the family.
Is it worth it…if the family is able to meet the child’s need without the Big A label? Is it even fair…considering there is a two year waiting list for diagnosis…for children in schools and families in desperate need of assistance? To clog up the system just so you can tell a nosey neighbor or judgemental in-law to sod off?
Then I thought of the word…NEURODIVERGENT. #AutismFestival17 was not the first time I had heard it used but certainly the first time it made such an impact upon me. But would the NeuroDiverse community be ‘offended’ by someone using the term without a diagnosis?
So I Tweeted some of the wonderful people I meet on Sunday to ask…and turns out…it is an option that I can offer this family. The ones that I spoke with believe you are #NDivrg before and after DX…and they recognize self-diagnosis.
I will definitely be sharing this idea with Little Red Ridinghood’s Mom…and I will be pondering its wider implications more.