Hi all, hope you day is going great,
Very busy couple of weeks as is normal for this time of year, the rush before school summer holidays. The book realese and work, So many things to think about right now.
Last week Hayley had a fall at the day center and fractured her right wrist, about half an hour before I had to pick Jake up from school so had a little jiggling to do and after 2 lots of x-rays and four hours we were plastered and back home with an appointment for fracture clinic. This is the second hand over the last couple of months so trying to sort out a bone density check for her.
Tommorrow I have the fracture clinic in the morning g and jakes physio in the afternoon.
We also had Niki’s prom she looked so very beautiful seeing her with her nails and hair done,all dressed up dropping her off and everyone’s reaction when. They saw her was really something else.
Picking her up arriving just at the moment she jumped on staged giving a Full production of let it go blew me away, but seeing all the other girls get up and join her brought tears to my eyes.
The next thing was preparing for Josh my oldest sons birthday, it was so awsome to have him home and to see other family members and give them copies of the book for me it is passing on memories to them.
The biggest challenge for me was the emotions suroundings the school issues,
The week before last Jake came home and said the school had made a move that wasn’t surpost to happen till September, it wasn’t that which was the issue but the fact that they did not tell us it was happening as you can imagine for autistic children cha he is hard a d should be done with plenty of warning to minimise the anxiety and stress.
As a parent I have always tried to support the school in fact me and the children stood by teachers side at a recent rally about cuts to teaching assistants. The teachers got up and on the videos said we are In it together, but Thier actions are the complete opposite,
Because of the change and he fact my son has an Ehcp I wanted some clarity about what was going on so I could sit down and explain things to him so when he goes to school he knows what to expect, I waited it didn’t happen I asked again on the same day when I went to pick him up they said they were trying to find the right person to see me. I waited another four days in my mind I know they had no intention to give me the meeting.
Friday morning we received a letter from the school asking us to remove something we put in a private parent group not public( private ) apparently the group was not so private after all.
I phoned the school and told them I wanted a meeting with the head why is it they have to make things so difficult for special needs parents to address issue at school that affect our kids learning and emotional well being.
They stone walled me to start with finally I got through to the head teacher and she sorted a meeting with the new Sen, I was then able to get her to introduce herself to Jake so he knew when he goes back in September who to go to. It isn’t rocket science to do that.
I have decided not to do any more rallying for them I don’t want myself or my children being used as political pawns In it isn’t good for my health or my kids emotional and mental health either. I just want my children to get the support they receive extra funding for and in accordance with his Ehcp.
If that .wants I go in and challenge them, then I will, for to long parents have been powerless to do anything for fear of our kids being excluded, we are accused of being mentally unstable for showing Emotions when we are trying to help them support our kids to thrive.
Things did change for a while when we fianally got support and diagnosis, the kids are thriving with the right support.
Thier autism anxiety and tourettes it is still Thier it won’t ever go, it is the support package that is the thing that keeps the children in school full time with out it I do t want my children to ever feel or be treated how they were again.
I guess that is a huge reason for the book, and to bring something innocent and fun Into Thier lives again something that raises awareness in one respect, but has a fun story aswell.
I want this book to show autism in a different light, through a different lens,
Not saying the negative things because they here that all the time about the behaviours that are associated with autism spectrum and anxiety and tourettes, behind all that just these beautiful loving giving kids that have been failed through a system that needs a major rethink.
My kids will never get one hundred percent attendance it is unfair that because of that they will face many exclusions from things. We missed out on .proms and sports days school trips and so much more.
We are starting to get invited to some and I insist on others. Reasonable adjustments must be the forefront of the change sensory assessments fast hospital and diagnosis processes all these things are vastly important as a way forward for not only children o. The spectrum but adults.
Less judgement of parents who really want the best for Thier children I know own that some families have issues and as these children grow I to adults they are more able to express what they found didn’t work with them and by talking up these adults can affect change for the younger newer diagnosed families. I am just begining to see the impact of this or people from all over the world I have researched read and spoke. To so many fantastic indeviduals. I have found them to be very indearing, truthfull with thier experiences for that I am truly thankful
to have educated myself as to where we are as a society on issues like autism mental health and Invisible illness.
The other point is schools talk about Thier funding but the pressure on families with chdren with additional needs or adults it is not spoken or heard enough, parking at hospitals trains to hospitals photo copying and phone calls equitptment it is a big buisness in the disability sectors many families are taking to fund raising for the aids Thier children need to function like everyone else.
I guess I am one of them that have had a huge financial hit, this book if I can sell lots of copies will some what go towards continuing to meet Thier needs with out having to fund raise I want to earn what I need if that makes Sence.
I did fund raise for the book, because with our that it wouldn’t have been possible to imbarresed on this new change it wasn’t easy to do it did’nt feel right to do but it is just something a way to make a possitive change for a brighter lighter future.
Have a beautiful week