Friday, 18 May 2012

YouTube video

I just wanted to share this very powerful & moving YouTube video that has really touched Tim & I. Please watch, and even share on Facebook if you're feeling extra lovely to help raise awareness. Thank you x

Tuesday, 15 May 2012

Timeline of appointments

This is for our benefit more than anyone else's, but I'm always getting muddled about when I first enquired about this, or when our first appointment was for that, so I just need to write a list of when things have happened.

Dec 2011- Asked GP for referral to Paediatrics
Jan 2012- Letter from hospital explaining the waiting list is around 11 weeks
Jan - Told by Heath Visitor that speech therapy was unlikely at such a young age
20 Jan - Self-referred for speech therapy & occupational therapy
3 Feb - Health Visitor did SOGS test confirming River is developmentally delayed, agreed to refer for hearing test
24 Feb - Applied for Disability Living Allowance with help from Cerebra
27 Feb- Appointment for a speech therapy is offered
9 March- chased hearing test with hospital, they'd never received a referral! Called Health Visitor & asked her to please refer him.
12 March-Speech Therapy assessment
14 March- Portage home visit by Educational Psychologist
19 March- received Speech Therapy report
23 March- still no news on hearing test so chased again & was offered an appointment
26 March- received Ed Psych report
23 March- letter from DLA explaining they've requested a report from our GP
30 March- Paediatric assessment at hospital- although when we arrived, we were only seen by a registrar. He didn't have a copy of the Ed Psych report. He agreed to refer us to the autism specialist.
4 April- Health Visitor repeated his SOGS test at home
6 April- received paediatric appointment through as the registrar had promised- but instead of being with the autism specialist, it was with another registrar for September.
11 April- Appointment with GP, expressed unhappiness at being fobbed off with another registrar appointment. She agreed to refer us & ask for either the autism specialist or another Dr experienced in autism, NOT a registrar
25 April- Call from DLA requesting the Ed Psych report. Emailed it to them.
27 April- received Paediatric report
May- still not heard about paediatric assessment so called hospital & was offered an appointment with another doctor very experienced in autism for July
2 May- letter from DLA apologising for delay
8 May- received an appointment for the main autism specialist in June
8 May- Family Support Worker round to apply for 2yr old pre-school funding for River
9 May- Senior Portage Worker visit
14 May- received letter confirming our application for DLA was successful.
14 May- Family Support Worker called, application for 2yr old pre-school funding was successful.
14 May- Speech Therapy & Occupational Therapy home visits
16 May (tomorrow)- Hearing test at hospital
16 May- Nursery nurse from Health Visiting team home visit
17 May- Occupational Therapy home visit
19 June- Paediatric assessment with autism specialist
13 July- Paediatric assessment with Dr experienced in autism

Thursday, 10 May 2012

Exploding head.

Well as the title suggests, my head is literally about to explode.

There is just so much to think about constantly, which is so unbelievably draining. Constantly things to help with River's sensory issues, to help him understand the world, and to help him communicate.

I no longer talk in proper sentences. "River, look! Look! Car. Ooooo, car. Car goes brum brum! Car goes brum brum! River, eat breadstick? Breadstick? River, eat? Ta. Ta. River, clean hands? Clean hands? 1,2,3...clean clean clean! More? More? 1,2,3...clean clean clean!!"

For god's sake, I'm driving myself barmy. You see, children with ASD don't do well with big sentences. They don't know which words to focus on- so if I said, "River, would you like a breadstick to eat?" he would switch off & not pay attention as it's too muddling. So sentences are shortened to one or two words. And they are repeated two or three times to try to imprint the word in his brain. Then there is signing. As River doesn't speak & doesn't understand much speech, we do Makaton signing to give him a visual cue. So instead of just giving him another breadstick, I will say & sign, "More?" a couple of times, then get his hands & attempt to make him sign it before giving him the breadstick.

Then there is the constant preparation for what's about to happen next. Children with ASD struggle to transition from one thing to another, so getting in the car & going to the supermarket or a friends' house might not be a big deal to most children but for children like River, it's a major cause for anxiety. Suddenly they are plucked from the world that they are comfortable in- lots of things to spin, no noise etc- and plunged into a new scenario with bright lights, noises, unfamiliar people, nothing to spin- and nothing makes sense to them any more! Sooooo- we help this by trying to prepare River as much as we can. For instance, the past few weeks have been horrendous at bathtime. River will happily stand in the bath but refuses to sit down. He will flick the surface of the water but refuse to pick up a toy from the bottom of the bath & scream with frustration. As soon as his body gets wet, he screams. God forbid if you try to wash his hair. He uses my hair as rope and attempts to climb out of the bath by hanging off it. Ouch.
So we tried a new tactic this week. The bath was much shallower to start. Instead of pouring water over him, I used a sponge. I said, "Wash arm? Wash arm? 1,2,3...wash wash wash!!" and timed washing his arm with my speech. He actually smiled! After washing him I said, "River, sit down? Sit down? 1,2,3-" & scooped up his legs- "Down!! Yeah!!" He stayed seated for about 10 seconds then jumped up again. But no tears! Vast improvement!
We will also (when River's a little older) use photos in prepare River- photos of pre-school before he goes, photos of the supermarket before we go, photos of friends before they come round.
We are in the middle of making a photo book. This will basically be a simple photo album with photos of familiar things- cot, mummy, daddy, beaker, raisins. The plan is that River will get used to these words & what they mean, & I will then use the photos alongside the real object- so when he wants a drink I will show him the photo of the drink. Then eventually, he will learn to bring me the photo of the beaker when he wants a drink.
There's also objects of reference. This is when an object is used to request something. River is picking this up well which is great. For instance, if he wants the tv turned over he will bring me the remote. If he wants bubbles, he will bring me a pot of bubbles. And even if we're right in the middle of something, we act on his request, as it's so vitally important that he understands that if he communicates with us, his needs will be met.
Then there are his sensory issues. River has real sensory aversion to certain textures- he won't touch pasta, jelly, finger paints or many types of messy play. So we try to do as much messy/sensory play as possible. Things like sand, shaving foam, finger paints, liquid starch & glue, cornflour & water, cotton wool. He also walks on tiptoes a lot so we try to get him to walk on different textures.
We try to make homemade sensory stuff as sensory toys from specialist companies cost an absolute bomb. So yesterday I got some balloons & filled them with various things like rice, flour, cous cous, hair gel, dry pasta etc to give sensory input. Also, River doesn't have very good fine motor skills & so struggles to turn the pages of board books, so we've adapted them by putting small rubber kitchen drawer stoppers on the corners so that he can turn them easier.

I feel very fortunate that we have so many people involved in helping River already. So far, we have: paediatrician, educational psychologist, speech & language therapist, occupational therapist, senior Portage worker, family support worker, and a nursery nurse from the health visiting team. And that's all before River is 2!! Sooo many people elsewhere in the country are struggling to see anyone other than their health visitor or GP.

Has this post made your head spin a bit? Maybe found it a bit boring? I am not surprised, as that's exactly how I feel about it every day. Of course I'm not bored of helping River, but I'm so bored of constantly thinking about everything I'm doing all of the time, wondering what else I should be doing, what other games I can think of that will help River progress.

Right, I'm off to take some headache tablets and get River up from his nap.