Rock the boat

I received the letter I had been waiting for yesterday, it was the letter which followed the conversation with our social worker saying that the disability team panel had decided Bella and I weren’t in need of any support over the summer. I opened the envelope with trepidation, it was quite thick so I found myself a comfy spot on the sofa ready to plough through the pack. Actually what I got was one sheet of paper stating the names of panel members and a quick message that they had decided she “didn’t fit the criteria.”

The rest was bumf, information about any disability event in the city for any age. I was half expecting to find them directing me to my own stay and play that I’m running once a week through the summer. They also very kindly suggested I attend a local support group. WTAF!

I do not need a support group, I need actual support and so does Bella. I need some time off to recuperate and she needs to go somewhere that will push her, encourage her to engage, explore and most importantly not regress.

I immediately picked up the phone and called children’s services requesting to speak “AG” to the sender of the letter (and lead panel member.)

“Oh her number doesn’t seem to be working. I will email her asking her to call you. What’s your social workers name.”

One day later and my phone rings, it’s my social worker.

“Hi I’ve had an email from AG asking me to call you.”

Actually this wasn’t what I had wanted, I know what my social worker said about me, I sat with her for three hours making notes about every detail of our lives. I wanted to speak to the person who has the criteria in front of them, the person who decided to tell me to go to a support group rather than to offer actual, tangible support to a child who attends a special needs school because her needs are way too severe for her to be considered anywhere near the mainstream.

This panel I found out yesterday are the panel who decide if a we are eligible for direct payments (money which I would use to pay for specific care for Bella.) On paper you’d think we were right there single parent tick, two children with additional needs tick…apparently not.

The social worker has offered to send me her notes, that’s fine…but it’s not what I asked for. I want the notes from the panel, I want the bloody criteria.

“Oh I don’t know the criteria but I can try and get it for you. I think her age went against her.”

What? She’s six? So kids aged six don’t need support, their families don’t need respite? Next!

“They said they didn’t think her behavior was unmanageable, that it could be handled within the family.”

*Picture me slow clapping the panel.*

I love to see if this is written down on paper somewhere as (maybe I’m being hypersensitive, it has been known to happen) I think it’s bloody rude. Bella has specific needs, Ok she’s not particularly violent and she’s not imminently about to burn our house down, but she needs constant supervision in the day and at night. This morning she was up at 5.45, yesterday 5.30 (although I’d been up to her at 4.30.) If left to her own devices she can and does wreak havoc, emptying glasses of drink to watch how it pours, emptying draws and cupboards for the heck of it, trying to get out the front door, climbing on high furniture. The list is endless, but hey the family should be able to handle it…actually my family all work like most people.

Have I mentioned these people have never met Bella, not even the social worker!

Today I have Logan’s transition meeting at school, hopefully that’ll take my mind off all of this. Not before I send out one or two emails to professionals requesting an explanation.

I had to go full force last time I went to tribunal over Bella’s supposed lack of needs and I hoped I wouldn’t have to again. I’ve always been one to not want to rock the boat but I think it’s time I got out of the boat and just started swimming!

Birthday Rules!

Having a child who doesn’t have a clue it’s their birthday is a double edged sword. On one hand Bella has no build-up, no list of presents, no excitement…on the other hand it’s really easy for me! At now aged 6 she has never shown any disappointment that I bought the wrong style of toy or that I chose an Anna cake instead of an Elsa one, you know real first world problems. Ok I understand that I am being flippant but me being upset about her lack of awareness won’t change anything so I prefer to see it from the other side. Don’t get me wrong, just because she doesn’t know it’s her birthday does not mean that I don’t still go to town! She had presents, cake (multiple) and a party just like any other 6 year old girl..well almost like everyone else.

  1. Note to all, don’t wrap presents for Bella she gets less joy from unwrapping them than you do wrapping them up. Basically if they are wrapped she doesn’t know what they are so ignores them indefinitely. 
  2. Cake is important, the candles are even more important and singing Happy Birthday is essential (although some random people get a slap for singing it?!) This part of the birthday routine is he only bit that gets much response. Lots of flapping and singing are the norm for Miss Bella-Mouse and she normally cheers “Happy Birthday” at the end which is adorable! Blowing the candles out still needs a lot of help but she loves watching them go out and be lit again…and again…and again!13313797_10154218605664579_157479238_o
  3. Parties are difficult, Bella doesn’t join in games or often even play with other children but I put my thinking cap on and the combination of mobile sensory room where she often went to hide (and scoff popcorn,) a big secure room where she could safely run around and a bouncy castle were just enough for her. I invited 7 children with 4 coming plus her brother but that was absolutely fine for her. A McDonald’s Happy Meal and another cake meant a perfect few days.

If I were to have words of wisdom (it doesn’t happen often I promise) it would be to do what they love. Don’t worry if it’s weird or “not the normal” thing or “what you had envisaged.” Make their day their kind of amazing!

Petite Pudding
Diary of an imperfect mum