Today has been one of those days when I wanted to just say “stop the ride, I want to get off”.
Yesterday my gorgeous youngest son started to have unexplained black outs, so as we have an amazing GP, we went along last night. We had to return this morning for bloods.
Now, Emla cream, as many of you will know, does not do what it says on the tin! So, after applying it to his hands and arms (then using the obligatory cling film), we headed off to the GP’s surgery (again, we have a great GP). I had to spend half an hour reassuring him that he would still have some blood left, the nurse would not be a vampire and take blood with her mouth and yes, it may hurt for a few seconds but he could say a naughty word in his head if it helped.
The nurse was great and told him it would be ok if a naughty word slipped out as long as mummy didn’t mind. So after two attempts and two very loud “oh Sh*t”, another nurse was called in to try his other arm. It was a very entertaining 20 minutes with us all saying naughty words to take his mind off what was happening – two nurses, me and J all saying “sh*t, sh*t, sh*t” with poor J wanting to giggle but at the same time screwing up his face to let us know that this hurt.
I really felt for him. Imagine going in for tests, not knowing what to expect, not seeing it coming and then just suddenly feeling the scratch. Yes, I think a few of us would say “oh sh*t”. I am just grateful that this was the word of choice as his vocabulary can be quite extensive.
When we walked out of the room, everyone looked up and you knew we had been heard. I am not sure what everyone thought but there were a few confused faces.
Once home, I had to then reassure him that blood would not just fall out of the holes in his arms and that he also wasn’t in trouble for saying the Sh word. I did however, assure him that he had used up his quota of naughty words now until he is 18.
I was due to host a web chat on Bringing Us Together this afternoon on our website and so, Daddy was called into action (thankfully he is on nights) so I could carry on with that. The web chat was about the Children and Families Act and the revised draft Code of Practice. It was a great chat but wow, the lack of knowledge, the mis-information and the poor practice out there has left me feeling really down.
The lack of understanding of how this Act will change things for families is frightening. At Special Needs Jungle, we have been writing about the reforms for almost three years now but that is something we chose to do. No one came along and fed the information to us (well not at first anyway) so how can the families who are trying to work out which way is up find out what they need to know – and fast.
From September, the new Act comes into force and the Code of Practice – currently out for consultation – has almost withdrawn the whole person-centred approach we were initially offered.
It is really concerning. Lack of knowledge, removal of One Page Profiles and little mention of Person Centred systems in the Code of Practice, together with so much inaccurate interpretation of what the new Act actually means is going to result in a chaotic world later this year.
I am disappointed that three years since the launch, so very little of the accurate information available is actually getting to the people who need it. I am beyond disappointed that person-centred systems are of little relevance to the new Code of Practice.
So yes, I want to stop the ride and get off. I would like to curl up in a small bubble and pretend it’s not going to affect me. I am mentally exhausted at the thoughts of the battles ahead, not just for my three children but for those families who are not informed.
Tomorrow, I know I will be back on form, but just for this evening I need to step off.
4 Comments
I think you’ve earned a day off.. or two! Head will be back up high again tomorrow ready for the next fight I’m sure. It ain’t easy but someone’s got to do it 😉 take care of yourself x
Thanks Steph – I am back on it today (with a stinking headache). Thanks for taking the time to comment xx
Funny, I just been talking tonight with a good friend about Reforms, services and SEN cynical stuff. Similar to your feelings Debs.
But, what is important to us? We are. The families. How we are with our children, how we feel about them, the opportunities we give them, the places we take them, our days out, out times together over meals – that is what is important. And that is not about any reforms or services. That is about us. Our parenting. Being you and being with your kids. Teaching them not to be afraid, teaching them about their rights, their community and society. Every day we take our kids out into the big wide wild that is full of prejudices and discrimination. They are learning each day another skill that will support them to grow up to be amazing young people – and they are going to need to be amazing because as a disabled adult it is tough out there.
So Debs – keep up your spirits as you are doing it right!!! Keep believing in person centred approaches because it is about how we lead our lives – it is a philosophy, it is a way of life for us and in doing so we will teach others how to be accepting and respectful of all people.
phew.
got that out.
love you Debs!
Katie
Love you too, honey – thanks for those wise words, exactly what I needed this morning xx