I am sat in the car outside hospital waiting with my boy for yet another appointment…this time Endocrine. We have just been to Riding for Disabled then hotfooted over to Addenbrookes. Standard busy day for a SEND parent.
What made today even busier was trying to finish off presentations for my work whilst also trying to coordinate extra provision for William before his next EHCP review at school. So after a great chat with a v helpful friend yesterday, Lou, I have been guided down further roads of support I should be seeking for my son. Now, you would presume that I would be guided through all the possible channels and all the support that is out there is handed to us right?
Being a SEND parent is ridiculously hard. So I have asked again on provision of getting an Education Psychologist back into school, a specialist teacher from a local special school & a music specialist teacher in to assess and support William before his next review.
Because his next review will be lining up so much more of his future. A child with an EHCP has to start looking for secondary provision a year early. We will have to do a transition request, provide evidence of his disability both physically and mentally to a panel and hope that our son gets the school of choice sooner rather than later…..not just a standard application like the rest of humankind!
All this while trying to come to terms with the fact that his physical abilities are declining before our eyes … causing me to feel so sad so so often now.
The feeling when you suddenly remember something and feel sick to the stomach….that’s me most days behind the smile. I can’t describe it other than a helpless, hopeless feeling.
Even when I try to do things like tennis or running to take my mind off life – it’s still there….and I’m running slower, my tennis is rubbish…so my therapy is not working how it should! It’s so frustrating and there is no answer because ultimately there is no cure.
Mum guilt has been awful since I was diagnosed with cancer, I feel like I haven’t been able to do as much for my boy as I should have. Was there a trial we missed? Is there some other therapy out there that we could be doing? What else can I do to stop his decline and help him? Having cancer rocked me more post cancer than it did during treatments because I looked on it as one step at a time – the realisation of what the hell I have been through keeps hitting me. The hormones are causing me to not be quite as stable as I would like. My boob is still quite sore after surgery, 5 months down the line! It’s a battle I’m still fighting even though the disease is gone. But that’s another thing, it’s gone but now I have the dread of annual MRIs to check…..so really in your mind it’s never totally gone.
Life has definitely taken us on a downward slope recently and I really hope for more positive days, more positive news and more joy in the months ahead because the life of a SEND parent is hard enough without all the other crap thrown at you!
2 thoughts on “There is no title for life right now…”
I have no real words yet again, (mad for me I know) but you are amazing as is you little boy and family. Every day you show how brave and strong you are – big hugs to you and yours! Jan xxx
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You are so right.
When your child has learning difficulties as well as Duchenne life is doubly difficult as it’s so hard to get both physical and mental needs met. Forget social needs.
I have been through the same thing. A boy with Duchenne, severe learning difficulties and going through breast cancer too.
Make a nuisance of yourself if that’s what it takes to get help for William and your family.
You know where I am!❤️
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