It occurred to me this morning that Orange is almost 15 months now and clearly has quite complex needs and yet, despite living in a part of the country that is supposed to be well-served by support services, he has nothing but physio.
We have been told that he needs physiotherapy, speech and language therapy (SALT), occupational therapy and Portage (learning through play). He may also need visual and sensory support services. Yet we sit here, seven months after moving to Surrey with nothing but physio. We have done all the right things to try and get him the support he needs and yet none is forthcoming.
Instead, I am his speech and language therapist, occupational therapist and play specialist. The pressure is enormous. I am no expert. All I can do is read, research, ask others in the same situation for advice on things they have done to help their kids. I am guessing, really.
Two months ago, I got a phone call from a lady at Surrey County Council offering us a place at something they call a FACTS group. This is a family therapy session where mums and children with special needs go along, play and have a bit of time with a therapist or two, either occupational or SALT, usually. Great, I thought. Except it just doesn’t really work. Far from being a ‘family’ therapy session, it transpired I couldn’t take The Beep with me. Quite apart from the fact I can’t get childcare on the particular day the FACTS group is held, why should my other child be excluded, cast aside, yet again, in order for her brother to have access to the services that he needs. She puts up with enough hospital visits, therapist visits and general worry. I’m not about to dump her in yet another creche to sit in a room where Orange might get 5 minutes with a therapist, if he’s lucky.
The FACTS group is bogus, really. Set up to look good on paper, but from what I have heard the therapists are there perhaps once or twice a month. What value would we really get out of this?
So I said thanks, but no thanks to the lady on the phone. She seemed quite put out and almost insistent that I find a way of getting to the session. As if it was an obligation, not a choice. Perhaps I’m not the first parent to point out that the service isn’t quite what we were expecting, doesn’t work for our family circumstances and, actually, what is needed is frequent, dedicated OT and SALT for our boy. That’s what we were promised after all.
And that was that. End of conversation. I felt let down, really. And lost at sea, wondering when we might eventually get the proper support we need. But no, Surrey County Council really like to kick people when they’re down, there was a stinging follow up to this little tale. A month later I receive a letter. I open it excitedly hoping it’s news of a referral. It’s not…
‘To the parent or carer of…
This letter is to confirm that you have declined our offer of support via the FACTS group for your son and to let you know that all professionals involved will be informed accordingly’
Hang on a second. You have declined? All professionals will be informed accordingly?
Now excuse me if I’m being a little oversensitive (easily done when you’re worried and exhausted 24/7) but what exactly does this mean? Reading between the lines it sounds very much to me like I am being accused of depriving my son of the services he needs, not that, in fact, you are failing to provide them.
Parents of children with special needs can be very vulnerable, emotionally, and this kind of letter could one day just tip someone over the edge. Me? It reached me on a ‘good’ day, so instead of plunging me into a black hole I just got angry, put it to one side and am now resurrecting it to try and get Orange what he needs.
Sadly, it seems a common theme. I know many parents who have not only had to fight tooth and nail to get what their child needs but then, when offered support, it is lacking or inaccessible somehow. I don’t know why this is but there really needs to be a step change in how local authorities approach supporting vulnerable families and people with disabilities or special needs.
For now, it’s back to Amazon to see what books I can find to help morph myself into a better, all-singing-all-dancing therapist for my son. This will be fine, for a while, but there will come a point when we need proper support services to access equipment that he might need. Really, he needs a bath seat and some kind of supportive sitting and standing equipment. He will probably need a special car seat and or buggy at some point soon. But we can’t get these until he sees an Occupational Therapist. To buy these things would cost thousands and thousands of pounds that we don’t have.
So it’s back to kicking arse with Surrey County Council, requiring energy that (you guessed it), I don’t really have. I know I am not alone in this battle. For every parent out there dealing with the same, or worse, how do we get these people to listen to what we need?