Now that Sophia is two and doing so well and I have this new found appreciation that I am able to take matters more into my own hands and shape Sophia’s future for the positive, over and above her development stimulation exercises, thanks to my episode with the Health non-Visitor, I have decided that it’s time for her to be in a more sociable environment with peers and have requested that we start her SEN Statement process (Special Educational Needs). This means that she’ll be eligible for a specialist nursery facility or have a 1:1 carer in a mainstream setting. Of course, since making this decision, and since her birthday, Sophia has nose-dived into hideousness health-wise, with a virulent chest infection for the past 3 weeks which has disappointingly affected her development, particularly her eyes, much to her obvious distress as she keeps rubbing at them as though trying to clear them and make them work. Just before this latest infection started we were set new targets by the Physio, OT and Portage, huge ones by the Physio and OT, I might add, but again they assure me we’ll get there although I’m not convinced it will happen within the time frames they have requested, but we’ll give it a go. (See Physio & OT and Portage pages for update on targets.)
Prior to her health deteriorating momentarily, however, the few times we were amongst small groups of children, Sophia appeared to enjoy being with them far more than she ever has and definitely noticed their presence, touching them and watching, where possible, what they do. Our local baby and toddler groups are still no go areas due to the noise, number of bugs floating around which would render her permanently ill and the unpredictability of movement of the mass of children which makes her wail in anguish. (Up to 30 rugrats rushing around fills me with terror let alone Sophia.) She has, however, particularly enjoyed the monthly sensory impairment music group this past few months and at the last session she positively radiated pleasure at the singing under the big parachute that they waft in the air above the children, grinning and raising her hands up to the chute and clapping in excitement when it drifted gently onto her head. But that group is only once a month and the weekly Portage play sessions are excellent, but they are only an hour in length and I think she is now at a stage to benefit from more.
Interestingly, a couple of acquaintances with disabled children have commented along the lines of ‘haven’t you had enough yet? Don’t you need the break?’ when they realise that Sophia isn’t in childcare. It does seem to be very common for severely disabled children to be packed off to childcare settings quite early to give the parent carer a break. I completely understand why they would want the break, but I don’t believe most settings would work with the child in the way a 1 to 1 home carer can. So shoot me for sticking my neck out, but if there’s one thing being with Sophia has taught me it’s that perseverance pays off and I’m not risking her development. No professional, no matter how good they are, is going to persevere as much as this desperate mother, and as much as I would love, love, love more time off, I am hanging onto the fact that the massive trajectory of brain development takes place in the first 36 months of a child’s life. I am over two thirds of the way there now and I will endeavour to keep going until then at least. But I do fully appreciate that some parents simply cannot cope, some have no choice but to work and some have other young children to look after at the same time and therefore caring childcare, whilst not the optimum, is a great alternative. But I digress.
I’ve looked at our two local specialist school facilities which take pre-school age children. Both of them are excellent, but one takes children at 2 and a half, and the other at 3 and I’d like Sophia to have somewhere else to go before she’s 3. Plus there are definitely more children on the autistic spectrum at the school which takes from 3 and the noise and frenziedness of some of the children on this spectrum positively terrorises Sophia, so I’ve decided to try and get her into The Spring School for when she’s 2 and a half for a couple of sessions a week. Hopefully I’ll be able to go in and help as well as whilst I would love the break, I have to admit I’m not ready to hand my gorgeous girl over to a third party just yet, except for respite with Dee, I simply want her in a more social atmosphere than having my face looming over her constantly and my voice twittering on.
But it’s wonderful that I’m looking at potential placement settings because Sophia needs additional socialisation. I certainly never expected to be doing this when she turned 2. I have been asked by two of Sophia’s therapists to look at mainstream playgroup settings as well to give her additional stimulation, but I am not convinced that at the moment they are the best place for her. The children her age are so far ahead of where she’s at – their noises are erratic which she absolutely loathes and which makes her high pitch scream for hideous lengths of time, but if I put her with developmental age children she’d be with 10 to 14 month olds who just want to be hugged. OK, I’m exaggerating slightly but they don’t really socialise and interact to such an extent when they are so young and it’s that interaction I’m looking for for Sophia so I think I’ll keep that idea on the back burner and address it again in another year or so.
Parent Partnership Co-ordinators* (PPC) are the professionals who help co-ordinate the whole statementing process which is quite long and laborious by all accounts and can take up to 6 months to finalise. I’ve kick-started the process by sending our PPC copies of all Sophia’s reports from her Annual Review meeting in order that we can get the ball rolling as soon as possible. The reports have to be analysed by a review committee who then decide whether or not Sophia is eligible to be put forward for a Statement of Educational Needs (these are not the reports they use for the actual statement, they come later). If it is deemed the child is eligible (and of course Sophia will be) then there is loads more paperwork to address and more committee reviews etc.. I don’t really understand why a letter from her Paediatrician and a couple of the therapists working with her can’t just say – this child is profoundly disabled and is eligible – done deal. They are the Experienced Professionals working with the child and will know whether or not that child is eligible. What a time and money saver that would be. But of course the system doesn’t work like that so the Parent Partnership Co-ordinator writes to the professionals involved with the child on the parents’ behalf requesting reports to support that child being put forward for a statement. This process ordinarily takes about 6 weeks to be completed. It’s April now and I’d really like Sophia to be in The Spring School for a couple of sessions a week from September, hopefully cutting a few weeks at this beginning stage will enable this to happen.
*I found out who our PPC was through our Early Years Supervisor who overseas Dee’s Portage