Fighting the same fight:-it’s like Groundhog Day

I’ve not written anything in an age because I have been exhausted from having to explain again that just because my son is in mainstream school he is not mainstream.

I have had many meetings with school, I have offered to help with basic makaton, I have demonstrated to the teachers how I deal with Olly’s distress before he reaches crisis and I still get phone calls telling me what he’s done now. I see the caller id and my heart sinks.

3 weeks ago I got a call to say he’d had a meltdown and members of staff had been struck. I went into school and arranged four afternoons to come in and show how I work. We put a de-escalation plan in place for all staff members to follow and we’d follow it at home. Three afternoons went ok, I made notes on where it’s falling down and the fourth afternoon he started cycling up. I tried to follow the plan but his play doh and sand were not available and neither was his emotion fan. He uses the play doh and kinetic sand to squeeze and the emotions fan to pinpoint how he’s feeling so we can understand and act accordingly. If he’s angry, move him to somewhere quiet and dark away from his peers, if sad a cuddle and reassurance. You get the picture. So I’m doing this at home, with good results, more speech, more trust, I think he feels more understood. At school we spent an hour putting this in place and when I come to use it it’s not there. Banging head against a bloody brick wall.

So we have a meeting Wednesday where they are going to try to claim that nothing’s working and maybe he’d be better somewhere else. I will counter with it’s not been tried sufficiently or to standard. But I wonder if it’s worth looking elsewhere if they can not follow a five point plan. He has an EHC and an IEP and it’s not being implemented.

We don’t know what to do for the best. They’re happy to take his extra funding money but not do the work. He will be moving into year 3 in September and he won’t cope with the current set up. He’s autistic. Expecting him to just stop being autistic because he’s in mainstream is ridiculous. A few tweaks and he can stay with his friends. I worry that kids like Olly are being failed because mainstream are stuck in mainstream ways and special school places are very limited due to funding cuts. He doesn’t fit the criteria for special school, he isn’t “normal” enough for mainstream. He’s in limbo. Homeschooling him would be more isolating for him.

We will see what happens this week but I don’t see an easy solution to this 🙁

Xx

DLA The final

As you may know we have been fighting the DWP in regards to Oliver’s disability. They downgraded him, we disagreed. We appealed, they dismissed us. We filed for tribunal and got letter of support from our doctor and I dug out all relevant information from his vast file. We sent off photocopies of prescriptions, the letter, a further explanation in what we have tried, an explanation of his presentation of autism, EHC’s ……in short everything!

Our appeal was accepted by the court and we were told to await a date and information on court choices closer to us. We decided that we would go wherever gave us a date first.

Today I received a letter from the DWP stating they have changed their minds and have awarded Oliver the high rate of care component and low rate of mobility. So we don’t have to go to tribunal now.

From speaking to some parents about this I found that a lot of ASD kids had been downgraded in the dla scheme and the parents were just too exhausted to fight anymore. Is that what they are relying on? Parents not having the energy to fight to save the government a few quid? They have the money for weapons and HS2 which we don’t need but not the money for the vulnerable in society. I don’t blame the parents, God knows I felt like giving up, we have enough to do without having to fight for every last thing our children need but it was the principle of the thing. How can someone who has no knowledge decide on my child’s disability?

For us we would have taken it all the way with the risk of losing. It was important to have our voice heard but it was more important to have Oliver’s voice heard, the challenges he faces daily, the help he needs to become all he can be. I choose which battles to fight now, there are too many to take them all on and I can’t physically or mentally fight them all. I triage them; what he absolutely needs, what he’d like, what we’d like if we didn’t know about the current climate of cutbacks. I’ll probably get it wrong at some point, maybe already have. But I try my hardest every day for him and he tries even harder than me.

Xx