It's been some time since I blogged about J, a good few months in fact - a few months filled with indecision, change, helplessness and sadness at times. There are good things too, finally after many years of waiting we have been allocated a council property. The drop in rent is massive and I am just so grateful.
In September it became increasingly apparent that J was struggling even more than before and I made the decision to ask the LEA to carry out a Statutory Assessment of his educational needs. As any parent who has been through this process knows - it is fraught with obstacles and hurdles. I have not even asked for a statement of special educational need, just an assessment to see if J might require one now or at some point in the future, you would think I had asked for the Earth given the forms, the reports from the school and the additional evidence they are asking for. All this to decide if they will even carry an assessment out.
J is currently receiving 15 hours of one to one time in school, his reading is not even at National Curriculum level 1, writing is too difficult for him, social skills are well behind his class mates and he is struggling. Hearing your child say "I am no good..." is heartbreaking - especially when that child is not yet 7.
As a result of all this I made the decision to drop from full time hours at work to 16 per week making me entitled for the first time ever to extra tax credit and free prescriptions. I will not be as well off but I will be around to collect DS from school every day and also get him into some sporting activities. He loves swimming (something which once held fear for him) and goes twice a week - once with school and once with me. I am told that trampoline lessons might also be good for him so will be booking those in after christmas.
J has now seen an Occupational Therapist who continues to see him weekly and has also seen the community paediatrician whose impression was Dyslexia, Dyspraxia and Social Communication Disorder. As the OT said "quite a label". Personally I am continuing along the "let's wait and see" line with J as he has areas of utter brilliance. He is very bright (according to his teachers) and rarely forgets anything factual he is told. Getting it all down on paper is an issue but one I suspect might be overcome with a little creative thinking.
Bedtime is still an utter nightmare - especially since J discovered Ben 10. Evenings are now filled with J swinging from the light fittings (almost) while he saves the world. I should be grateful that my little superhero wants to protect me but I am NOT. I am then the horrible Mum who tells him to go to bed.
Scott the very nice OT (J's mummy ponders if he is single ;-))suggested that J is very sensory seeking and said there were various things to help with this. One idea is a bean filled comforter or long cuddly dog/cat/pillow type thing which could be laid over J at bedtime and provide some of the sensory feedback and so help calm J at bedtime. I tried with Sammy Dog a long bean filled draught excluder (always used as a bed companion) last night but Sammy Dog is too light so I suspect we will need something more specialized.
Watch this space methinks. Am willing to try anything.
1 comment:
The reason writing (for me) is difficult is because of the motor skills required. My handwriting in primary school was awful and I used to often get criticised for it! Sadly if the teachers criticise a young child enough for something related to their disability, it causes them to become more withdrawn and less social. I tried a lot to improve my handwriting through practice, the only thing that worked was writing slower.
Thankfully computers came into schools when I was seven and I learned to type and these days hardly have to hand write anything at all in my current occupation.
I also got a label of Social Communication Disorder (and a few others). I have that uncanny knack for facts too, but the sensory issues make it difficult to concentrate on what people are saying in noisy environments (which may not seem noisy to other people).
Sleep was always a major issue for me too having had what would be best described as insomnia for most of my life. To be honest though, one of the best things I find is to get in a routine and to have a relaxing time before I go to sleep. Sometimes I'm so exhausted after a busy day I just get straight to sleep, but like your son at other times I have to burn off some energy (albeit not in the same way) in order to get tired enough to sleep. Good luck.
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