Jude update…

Panel Result: I have just heard that the Social Care department of our council are not willing to fund Jude’s residential place at the moment as they seem to think that four hours a week support is working pretty fine for us all. Even going to panel they didn’t put forward a request for a residential place at school*. Therefore the social care side of the panel outcome was merely to involve and exterior agency that helps whole families cope with behaviours, situations and the like. To say I’m stunned is an understatement. I didn’t think even Herts County Council were this horrendous but clearly I’m wrong. To see someone literally break down in a meeting to uncontrollable levels but still insist everything is manageable at home is shocking and I can now see how some families end in such tragic circumstance. It horrifies me further that our government may reduce social care spending which will only lead to increased trauma all around.

 

(*social care and SEN have to work in coordination if a residential school place is to be granted. The social care side is the overnight bit and the SEN is education.)

 

The SEN (special educational needs) Team have been fantastic. They are the ones who pushed the panel meeting through and who are now trying to plaster over the wounds whilst longterm plans can be relayed. We subsequently have to go to an educational panel to try and get a day place at the school I love which will hopefully open the door to respite care being more accessible at the same setting. This will (again hopefully) lead to a residential place potentially opening up for Jude.  I’m numb with shock if I’m honest. I thought our case was watertight but I guess with council (government) spending and budgets come above human life. The external agency they want us to arrange to meet up with are actually already on our radar and I have a meeting with them in July so the panel on Monday was completely pointless. Why not just do what is best for the child? Why try to cut corners and inevitably have to spend more going round and round in circles getting ever closer

 

Jude, as far as I’m aware, hasn’t changed his feelings about his current school. They never give me any information as to how his day has gone and I’ve kind of given up asking as the response is always entirely negative. Yes, he’s a pain in the butt but you’re paid to teach, educate and inspire disabled children so I think I wouldn’t be criticised for expecting some level of communication. He is still only there until midday on both Monday and Friday and I’ve got to the point where I hate collecting him now so my mum typically goes in for me and waits in the reception area. It’s just horrible, I feel so embarrassed.

 

Looking forward and positively though we have a few amazing things coming up. Our wedding in a few weeks, Emmeline’s second birthday in July and also a holiday with the girls that same month. We have decided not to take Jude abroad with us for several reasons but these are the main ones.

  1. Jude has no concept of being in this or another country so the travelling alone would be stressful for him and therefore us.
  2. It’s kind of our honeymoon so for once, I want to be selfish and be able to relax a little. The girls are easy in comparison to Jude, they play and behave like neuro-typical children so travelling/engaging and understanding basic concepts isn’t entirely alien to them.
  3. We never leave Jude out and up until now he’s been pretty easy to pacify or engage but he’s not so simple these days. For Jude, staying in an unfamiliar location isn’t fun, it’s just scary. He would rather stay at home with his regular surroundings and routines. It isn’t a holiday for Jude like it is for us. He isn’t wired the same way.
  4. We really want the girls to have a fab holiday and feel relaxed and at ease. When Jude is on holiday, it largely becomes about him and what he can cope with. Again for once, we want it to be about the girls experiencing a holiday like most people do. I know their lives aren’t like most peoples but wanting them to have fleeting moments of normality is something I feel strongly about.

 

I feel bad about leaving Jude at home but in reality it’s the easiest and best solution all round. He won’t have broken up for the summer holidays when we go so is instead staying at home with my mum where she will wait for him returning on the bus each day. Jude absolutely adores Granny so will probably enjoy spending the week with just her more than he would enjoy a week abroad with us lot! They’re hilarious together, like little best friends.

 

I have been told that I shouldn’t exclude Jude like this and that these experiences are good for him which I agree they are. But sadly, not everything in life has to be an experience for Jude. It can be experience for the rest of us. Frankly, the person who said this to me swans off for three or four fancy holidays sans children every year so their opinion means very little to me. I’m doing what is right for everyone involved. I’m not saying we’ll never take Jude away again, in fact I want to take the children to the seaside for a couple of days in the summer holidays which I think he’ll really enjoy but on this occasion and for the first time ever, I’m taking the selfish option. Is this inconsiderate of me?

 

Sorry for so much negativity but I’m starting to feel like my life totally sucks. However, I’m strong and merely take everything as a challenge and know we will all eventually come out as better people.

 

 

 

 

Two Tiny Hands

Comments

  • Angela Watling on

    It sounds like you’ve had such a stressful time of it recently. I’m so sorry to hear things didn’t go as planned with the residential place. I really hope that with some help things come right in the coming months.

    As for your holiday, it sounds like you are doing the right thing by having a break with your girls. It’s not wrong or selfish and if anyone were to think it’ll be easy then they are wrong. But you need a rest and some time with your girls. If Jude is going to find the whole experience stressful then it’s not going be a break for you. Trying to give Jude new experiences and you having a rest don’t seem to go hand in hand. So enjoy your holiday and I hope it helps you come back refreshed and revived! #FamilyFun

  • tammymum on

    OH lovey, I am still so sorry about the panel decision. Will you appeal? In terms of the holiday, I would feel the same but rationally I would know it is the best thing to do. He wouldn’t enjoy it and it would make things harder for you and the girls, I meant that in the nicest possible way. You are human and you need a break too. I have said before my mum used to get respite care once a week for my brother and it wasn’t enough. We took him to Disney land paris with us once and whilst I think he liked it once there, the plane was so horrific and the change of environment and unknown was too much for him. It also meant my mum didn’t get much of a break! Good luck love and have a fabulous holiday. Thanks of joining us at #familyfun

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    • admin on

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