People often say that parenting is the hardest job in the world. There is so much pressure to get everything right!
Everyone has an opinion on your parenting and the media urges you to make it look easy peasy …but let’s add a wee teensy complication. A child who is different…
From personal experience, parenting a child with additional support needs is a whole new arena. And for the uninitiated, here’s a real life example. There’s no blame game here, if you are fortunate to have kids who are neurotypical , there are also many hurdles. But us so called “special “ parents?
We can trump every tale you may have. Sleep deprivation? Try 5 plus years of it. Patience? We can definitely win that one. Skin like a rhino? We develop it, we have to… we become warriors. Who else will uphold our children’s rights?
So, our child age 3 is meeting no milestones. Non verbal, unco-ordinated, no fine motor skills, incontinent. We are sleep deprived and exhausted with trying everything we can to help him develop. Toys, activities, baby signing classes, chiropractor, endless researching down rabbit holes.
Expert no.1 ; Health visitor. “He is delayed. He will catch up. Maybe try to relax a bit more” …
Expert no. 2.; Speech and Language Therapist. “ Come do a 12 week course on communication, there will be homework every week and if you can take a half day off work every week to attend it this will really help you to interact better with your child “. Did it. Realised just how poorly our child was doing.
Expert no.4 – Paediatrician: looked up syndromes on PC whilst I sat trying to get my child to attempt one of the tasks she had set out on a table. After waiting 40 minutes in a waiting room.
Expert no. 5; Educational Psychologist – actually we were lucky to get one – but this was 14 years ago. “ He doesn’t seem to understand words. He certainly has his own agenda .” No sh*t Sherlock …
Expert no. 6 : staff at additional needs nursery – superheroes…” we ‘ll just work on what he is good at or likes “…but he didn’t seem to like anything ! except food and being in company…
Expert no. 7: Education’s schools allocation panel (mystery experts, as parents never know who they are, nor have they ever met your child) – decision to send him to X school , not linked to the ASN nursery.
Expert no.8 CAHMS LD team . Undertook a helpful yet devastating ( to a parent) functional assessment . “He is functioning at 6 months old in some domains (now aged 6) and (-12 months in others”…” “ His learning disability is severe to profound and unexplained. He is in the wrong school”
This did help us to get him moved school …
And it goes on , I won’t detail every service or every unhelpful comment made to me as a parent. (but I do remember them all , so watch this space!)
The point is, we and especially I as a mum, waited and worried. Waited for a professional who would have THE ANSWER. A diagnosis was of less importance to me than someone knowing what to do, how best to nurture our son who was demanding and restless, only happy when out seeing the world and being with others yet unable to join in.
Know what I learned? Nobody has THE ANSWER. Us parents are the experts in our children. I’d advocate that any discipline going to work with children and young people have, as a core element
of their training, active listening skills and knowing to place the family at the centre of any consultations and decision making. We are judged continually in public, when our children behave “differently” or make strange noises.
WE really don’t need judgement from service providers and professionals.
Of course here are stars and silent heroes among any profession who show kindness to you as a parent when it’s clear you are in the depths of despair, or who understand that a booklet of strategies is a bit limited given the situation you are experiencing every day of life.
I suppose it would be a step too far to propose that professionals in training ,(or better still, once in practice and assigned to a family) spend a day in the life of the cases they oversee. But if you take time to ask us we can tell you a million things about our child that may just clue you in, to understanding their quirks and traits, and their gifts. You might also see then the worries and the battles that we have to manage every day. We really are the experts when
We really are the experts when it comes to our children …and to hear that would make things a million times better.