I’m delighted to introduce Nikki Brandon who has written her very first blog post, and who has also very kindly agreed to share it with us all as my Guest Blogger. Nikki writes very powerfully about an issue which sadly affects far too many families in the same situation.
Hello System,
I think there may be a hole in your safety net, and my son is falling through it.
You see he doesn’t fit. When he was born he wasn’t aware of your tick boxes, he became his own person. A lovely person, a person who has cerebral palsy, epilepsy, high functioning autism, and some other things too.
He couldn’t read the criteria to qualify for a Social Worker who specialises in children with disabilities, and he didn’t know he needed learning difficulties to get an EHC Plan. Neither did we. We truly thought that by encouraging him to achieve his full potential (that’s what parents do right?) we were giving him the best opportunities. But were we? What happens to the children that need extra help but who don’t tick all the boxes? What can they access and where do they go? Do they really just go in to the ether.
I’m sad System because you are making it harder for my son than it should be. I want to be a mum, not an email writer, meeting attendee, or advocate. I want to enjoy my son, not fight for him.
My son goes to mainstream school, that’s where you’ve said he must go System. He struggles there, I mean really struggles. He has to face his differences daily. He doesn’t fit in. His school is wonderful, and the staff are working really hard to accommodate him, but it’s mainstream, and despite their best efforts to cater for him they don’t have the resources. He is now a teenager and very self-aware, but don’t worry system, he’s managing, and for you that’s good enough. He doesn’t need to excel, he doesn’t need to enjoy things. He just needs to hit a base line, and a pretty low one at that.
My son has overcome bullying, judgement, and having his differences highlighted by the many visits from OT and physio, and other professionals. His school have been amazing, but he still feels different and awkward. I wonder, System, whether he would feel less awkward and different in a special needs school, where OT’s and physio’s and wheelchair services are regular visitors for the majority of pupils. We won’t know, not unless his grades slip below the rock bottom base line, and then I’ll have to decide whether my son should be told that he’s falling behind academically too.
If not fitting in at school wasn’t tough enough, System, you decreed he wasn’t disabled enough for a social worker from the disabilities team. Apparently cerebral palsy, epilepsy, hypermobility, high functioning autism and being partially sighted doesn’t tick enough boxes. He needs learning difficulties too. He does have a Child Protection Social Worker though because he’s a CIN or Child In Need. He has a Child Protection Social Worker not because he is in danger of being abused, but because he is at risk due to the fact that his needs cannot be met by you, System. His social worker is amazing and really tries hard, but this isn’t her field, and you know that. Everything we access has to be checked and double checked by my son’s social worker and her manager. Often they refer to the disabilities team for advice, they do that because my son is disabled, and not really a child that needs a Child Protection Social Worker, but he doesn’t meet your criteria for the Children with Disabilities Social Work Team.
My son doesn’t fit, and he’s falling through the net and I don’t know how to catch him.
By Nikki Brandon
Are you on Facebook? If so, have you seen The Special Parent’s Handbook Page? It’s full of the best information, advice and support for families of special needs children.
I also have another Facebook Page called Coke Floats & Chemo, to offer support, information, news and hope to anyone coping with cancer
I also have another blog called Coke Floats & Chemo Blog? It started out as a blog about how I was dealing with Cancer, but it’s now more about whatever I want to write about
Yvonne Newbold named by HSJ as a Top 50 Inspirational Women in Healthcare 2014
Well written and 100% true. So very, very sad that this is the reality for our children and so exhausting for the parents who are trying to fight for them
Thank you. Hopefully things will change one day for the children who ‘don’t fit’. Nikki
Thank you for reading and commenting, and I’m so sorry that your family is in the same boat. The stresses that Nikki highlights in her guest post are more than any parent or child should have to cope with. i hope things get better for your family soon. Best wishes, Yvonne
Brilliant piece, and oh so accurate.. I can associate all of your points, thanks for this
Thank you. I’m sorry that you are struggling with these issues too. Nikki
Thank you Dougie, it’s so wrong that so many families are having to cope alone with the same heartbreaking issues. Thank you too for your very kind words about Nikki’s writing, I completely agree, I think she’s absolutely spot-on in the way she has managed to capture the frustrations and sadnesses of what far too many parents and children are dealing with. Very best wishes, Yvonne
This is so familiar. I am sorry you are going through this too.
Have you emailed your MP and shared your story with him ? He/she should be able to help you.
Thank you J. I think Nikki has tried virtually everything! Best wishes, Yvonne
This is so right but yet so wrong. I feel my son is the boat that sailing and can’t be docked floating in the sea with nowhere to go and no land on either side.
That’s a great way of putting it, Sharon. I hope your son gets the support he needs soon. Best wishes, Yvonne
1 million % true!!!!! My boy has slipped through net, yet he has a full echp too, on top of other conditions. Sadly it’s due to funding cuts, yet the local ex cons get more help and provisions 😡😡