I have become so stressed about making this decision that I have decided to use the motto 'If in doubt,blog it out' to get my thoughts organised in some (hopefully) coherent fashion.
Before I continue I need to tell you that my experience with 'professionals' involved with Seraphina so far has been distinctly disappointing.We have had to fight for every little thing involved in her care,trying to get a chair other than her wheelchair to sit in has been a long drawn out affair spanning 18 months or more (still havent got one)Speech and languge therapy has been almost non-existant ..I have been waiting for 5 months + for a list of 'first words' to try and teach her!!, Dentist...2 years and still waiting.
When she began to lose skills at 18 months I had every answer from 'paranoid mother' 'you arent stimulating her enough' and ' shes probably working on other skills, give her time'...........cant you see where I am heading here and why I have such a mistrust of the breed in general??
Well now I have to make a decision, one I am agonising over as I so desperately want to make the right one for Seraphina and me.
We started the assessment/statementing process once before,just over 12 months ago for nursery but it was halted on the advice of the Disability service as she had been so poorly and had changed so mcuh from the initial assessments that it was pointless and she wasnt up to nursery.
So the process has now been started again and we have to have all the assessments done again.
In our area there is a choice of 2 SN schools.One of them wouldnt have Seraphina anyway I have been told as they cater for more able bodied children mainly Autistic spectrum and then we have the other one which is closer but has no PMLD class (profound and multiple learning disability..what Seraph is classed as).It would be the latter I would have to send Seraphina to.
I know, and this much I am clear on, that I could not send her to school full time. I am told she would not get one to one and therefore she would be in a class of up to 12 children.
The IDS lady said she in favour of a SN school ,that they have much more equipment for special needs children...but if she has no one to one to help her access it then its pointless in my opinion. The schools last OFSTED said that they found it was very easy for PMLD children to be ignored...hmmmm :-S
I have considered Flexi-schooling, which is as follows....she would spend part of each day at an SN school and the rest of the time being home-schooled (I trained to be a Teacher anyway)
The alternative to that is to completely home school. From a completely selfish point of view it would be nice to 'have a break' (we have no respite as I didnt want to send her to a hospice and from a carer point of view...not that we have ever beeen offered one...I would want someone who I trusted and who had prior knowledge of Rett Syndrome and with similar life values as my own..tall order I know lol).
I need to know that wherever she is educated she is loved and safe and stimulated at her own pace...and Im not convinved she would have that in full time school.
However on the flip-side, if I am honest,I dont know if I have the stamina to home school full time.Right now I feel rather burnt out with all the bad nights for example today I have been up since 3am..I hope that doesnt sound selfish? I just think that maybe having so little sleep then doing a days 'schooling' with Seraphina, keeping house and looking after another 5 children may be too much??? I dont know, maybe I am just wimping out.
At the moment we are doing roughly a half day school every day..at her pace and for which I am keeping extensive records of her progress.I am doing this all ad hoc as we have no input from anyone as to what to teach so we use the touchscreen and ipad working on recognising letters and numbers, matching,songs, messy play..that kinda thing.
What stuff should she be learning and what would she be expected to learn at home???
So you see (hopefully) my problem...I dont want to feel like I have let her down or failed her in any way but at the same time I have this image of her in a classroom with everone bustling around around her and her just sitting there on her own, not knowing whats going on, unable to tell anyone...the thought is heartbreaking.
But I need to make a decision soon..well by tomorrow actually as I have people coming out to make their first 'assessments' of her...I just dont know what to do.
All feedback welcome :)