Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx

Anniversary- at Bletchley Park

Our first anniversary was spent at Bletchley Park- Home of the codebreakers.  I know it doesn’t sound very exciting but to nerdy history obsessives like me and my husband (I’ve converted him) it was something we really wanted to do.  The office in the picture was Alan Turing’s, it’s where he actually worked.  We saw the enigma machine’s, we saw part of the thinking machine working, we learned so much more about the Polish contribution and the other great people who worked long hours, in secrecy to help stop the war.  There was loads of stuff I didn’t understand, the actual maths behind it, and the works of Alan Turing that were on display were gobblydegook to me.

Then when we watched the Imitation game we used our new knowledge to impress eachother “that’s not the mansion we saw, google where that one actually is- see I told you it wasn’t the real one” etc.  It just brings it all a bit more to life walking in the footsteps of giants.

We got to eat hot food with no one moaning for a wee, or a drink or “can I try some of your food” which was bliss.  We didn’t go anywhere fancy, but it didn’t matter, just as long as we got to eat together and have an uninterrupted chat.  Time together is not something we get much of, which is why I wanted to go away for our anniversary, instead of just going for a meal locally.  We don’t blame the kids for the time they take up, but having three very demanding children at home and one who is just as needy even though she doesn’t live here, means having the odd weekend away is a big treat and something we need to recharge our batteries and reconnect.  We sometimes lose ourselves in the day to day challenges and lose each other.

Its his turn to pick what we are doing next year.  To be honest I don’t really care what he picks as long as he builds in a hot meal, and some cocktails!  I think when you live lives like ours, priorities change.  Fancy hotel, bar, pool- ah you can keep them as long as I can have a sleep and a hot meal……..maybe a pudding too!

xx

First day at nursery school

On Monday, my baby girl started nursery school.  She has gone to a private nursery since she was 18 months but she calls this “nursery school”.  We call it foundation stage 1.  She is in full time eating dinner there and having to wear a “nooniform”. She has been so excited to start, going to her big brothers school.  She has dropped him off and picked him up with me over the last year so has known the teachers and some of the kids already.  The foundation stages, 1 and 2, are in the same unit so some of the children from last year are still there which made her happier.

She had a home visit from Mrs B and Mrs H where we did some paperwork and they played and talked to her.  For someone usually quite shy they brought her out of herself and got her talking.  On her first day she said “I am going to talk to my teachers, I won’t be shy” which was my big worry.  And when I took her in Mrs F asked her if she wanted to play play-doh and she said “no I want the sand please” so I was really happy as I thought she might be a people pleaser and just go along and not cause a fuss.  So I felt a bit better leaving her.

I know she’ll blossom, I know she was ready, but I put on her uniform and wanted to cry.  She looked so grown up.  She’s my baby, sandwiched between two losses and has been my little buddy for the last year, we have done loads together and I find I’m a bit lost without her.  I know I will fill the time but shopping and gardening won’t be the same without her.  Letting her go, knowing she’s my last was harder than I thought it would be and I am a bit sad but I know in my heart it’s right for her.  It’s not about me, it’s about what my beautiful little girl needs to fly!

She came running out of school yesterday and up into my arms babbling away about her day, and her dinner, and her friends and painting which is wonderful for me after having 2 non verbal kids and home school diaries in which to communicate.  She is just so happy, carrying her book bag, showing me her hanging-up-her-coat skills (which she loses once she walks through our front door), discussing her paintings in great details and just talking about her new experiences.  She finds wonder in everything. She had to do a booklet “all about me” to take in on her first day, so did a self portrait

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This is her picture of herself.  I think it’s great for a 3 year old, but then I’m biased.

So my baby has taken her first steps into the big world.  My job is to support her and to catch her if she falls, and set her back on her feet.  Right now, I’m looking forward to 3.15pm and getting my big hug and all the day’s news.  Oh and another painting!!

 

xx