I am still digesting a conversation from Tuesday. It is a conversation nearly 3 years in the making and it made me need to take a seat.
Anyone who has gone through Umbrella Pathways will tell you it is not an easy route. It is a long exhausting process and you will need to fight on behalf of your child. You may well have to go toe to toe with a GP to get a referral sent, you will definitely know everyone’s names and direct numbers, and they may even sigh when you call yet again.
But Tuesday’s conversation is one I had been holding my breath for.
The Community Paediatrician told me that the discussion at the beginning of the month had resulted in Ells being diagnosed with Autistic Spectrum Disorder. Yes that is ambiguous I know, but here in Worcestershire it is a minor miracle we got that much! I have to wait another couple of weeks for the full report to come through so I can see what they actually mean, but it is worth the wait.
When you have spent nearly 14 years, the whole of your child’s life, knowing something was a little ‘off’ with them but not being able to put your finger on it. When you’ve had GP’s accuse you of Munchausen Syndrome by Proxy, when Health Visitors have labelled you depressed and hysterical, when schools have intimated at something being wrong but not followed through, when your guts have just told you to push the door harder – this one phone call is confirmation that this Mummy knew her girl better than anyone else.
I have said over and over to professionals and friends, diagnosis is not a label it is a tool. It is a necessary tool for children who do not see the world they live in as we do. They need additional help to understand and quite frankly so do we! We need the health professions to change their language towards diagnosis. Listen to parents more. Don’t keep talking about labels, start talking about the tools these parents and teachers need to help these beautiful children live in a world that overwhelms and confuses them.
My daughter is nearly 14 now. She is as intelligent as she is beautiful. She is creative and funny, a day dreamer and hard worker. She still needs help with the little stuff, she still doesn’t fully understand her peers and their humour, but she is learning all the time. Now the school will be able to access funding to educate themselves and provide the support she needs going forward towards her GCSE’s.
She has a plan, a hope for the future, and now she has a tool to help her get there. It was worth the sleepless nights, the constant phone calls, the ridiculous amount of appointments, d the exhausting repetition of her story to specialist after specialist.
We got there in the end Ells.
Now our youngest has a similar path ahead. Although they are alike, they are very different ends of the spectrum. My introvert is getting the help she needs; next up is my extrovert bouncy boy.
Oh the fun we shall have with this one!