Wednesday, 15 June 2011

Squidging and Fighting

Pokey pokey poke
With Bee's sensory issues we've never had much luck with Play-Doh, or any kind of craft/messy play substance but recently we had a small breakthrough recently as Bee decided that Play-Doh is now the funnest thing *ever* in the whole wide world! I'm really happy as Play-Doh is going to be great for her fine motor skills, Bee lacks strength and muscle tone in her fingers and it can make gripping things or picking up heavier items difficult.

Now, instead of tantrums when she sees the Play-Doh tub, we get big smiles and frantic signings of 'yes'. Of course, the tantrums haven't really disappeared, they've just transferred to the end of the play session instead of the beginning. Gosh help me if I try and put the Play-Doh away! 'Tidy-up Time' has become the cue for strops and real tears.
But I want to keep playing Mummy!

The timing of this breakthrough is especially nice as we had some frustrating news recently. Two weeks ago Bethany had another video fluroscopy (a video x-ray) to assess whether she was still aspirating and if we could try to reestablish feeding.

It was not a fun appointment. Bethany was strapped into a chair, with a nurse behind her holding her head still and a nurse in front clamping her arms down. She was effectively immobilised. I then had to force-feed her puree and liquid to see if she aspirated it. Of course Bee absolutely freaked, as she's very tactile defensive about both of those substances, and refused to co-operate at all. It was very distressing for both her, me and her Daddy, who had to wait behind the protection screen because it was an x-ray. The result of all this was we discovered Bee tolerated the puree and didn't aspirate any of it, but she aspirated the liquid. So a small step forward. We could start giving her puree but no liquid. Wonderful! The minute the nurses undid the straps and I picked Bee up she was all smiles, even blowing kisses at the nurses. One commented that they'd never been forgiven so quickly! That's my girl, she makes me so proud. So, armed with a sticker for Bee, and good wishes for us we left the appointment feeling traumatised but happy.

Bee's Speech and Language Therapist (SLT) had asked me to keep her informed of the results so I rang her soon after the appointment, only to find she was on holiday. A few days ago we received a call back. She was happy for Bee to commence puree feeding and said this was the only way to teach her to chew: she had to be weaned like babies are. I explained about Bee's tactile defensiveness, that she won't touch puree, won't even let me spoon it into her mouth and the SLT said Occupational Therapy was the way to go. That's who deals with sensory issues.
What a huge breakthrough!
Bee already has an Occupational Therapist (OT), we've seen her sporadically since Bee was small. She's helped with Bee's fine motor skills whilst her Physio has worked on the gross motor.SO I rang her for an appointment, which didn't go to plan. Her OT informed me that, due to funding cuts and staff shortages, they do not provide therapy for children with sensory issues. There are just too many referrals.


So Bee can't have an OT appointment to deal with her sensory issues? So how are we supposed to get her to eat, have a bath or go anywhere near grass? What are we supposed to do?? All Bee's OT could offer was apologies and an information sheet in the post. I found the will to thank her and ended the call.

At this point I freaked. Not at Bee's OT, that would be unfair as she doesn't make decisions, just follows them through and has the unenviable job of telling the parents. But I did freak at the wall of the living room and a defenceless sofa cushion found itself flung across the room. I alternated between being absolutely furious and so devastated I sobbed. To top things off, I tried to get a cuddle from my girl to make me feel better and when I asked I got an imperious "naow". Fine then.

Squidgy squidge
So I pulled myself together and got back on the phone. First call was to Bee's SLT to explain I'd had no joy with the OT and was going to have to look elsewhere. Then I got on the net looking for a private OT, knowing we can't afford it but willing to look anyway. As it turns out; no, we can't afford it. At least £70 an hour to go private and gosh knows how many appointments it would take to help Bee. I started looking at charities. Cerebra do grants for therapy, but only if it's something that shouldn't already be provided by the NHS. No luck there. 

Then I came across

It seems so perfect. they see children from 6 months to 12 years and deal with all kinds of problems with their dedicated physiotherapists, SLT's and OT's. They spend 2 days with your child and create a personal plan to work on at home, which is reviewed every 6 months. Plus they're a charity *and* they're in Warrington! I'm there! Where do I sign up?? I couldn't click around the site and read the pages quick enough. Brainwave seemed like everything we desperately need for Bee.

I sent off for the information pack anyway, can't hurt to have a look. When it arrived I found they have a 'hardship program', designed for people who can't afford their prices. Foz and I plan to apply, it's means-tested but I can't imagine that we will fall above their threshold. We've sent the initial enquiry form back and are now waiting for a Brainwave therapist to call. We'll discuss whether or not they can help Bee and we'll ask nicely about the hardship program.

Fingers crossed.

It's on my finger Mummy

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