Not the fun, theme park style rollercoasters, I meant the type that seems to control my emotions, the type that floods my heart with love for Jude because he has been an absolute joy for a short amount of time but then plummets me literally into the ground with woe and dismay that actually no, he hasn’t had a miraculously permanent change of attitude. He really does have severe learning disabilities and expresses himself as he wants. ¬†Today is a very typical day emotionally as a parent of a learning disabled child. I imagine this is what most parents like me experience regularly, surely it can’t be just me.

 

For example today – supermarket visit, just Jude and me and he literally couldn’t have been more amazing. Chatty, funny, helpful *”don’t forget to get potatoes mummy”* style helpful. Whilst standing at the checkout, he helped unload the trolley and then waited beautifully by my side as I paid. He even told the checkout guy “I like you” whilst giving him a toothy beam.

 

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WOW I thought. YES, HE’S FINALLY UNDERSTOOD!!

 

Back at home and he starts to irritate his sister once more and my feelings are almost tangible as they drop like a stone. Why Jude, when you see how wonderful you can be do you choose this other persona so frequently. Is it because he’s a boy? Are boys like this? I have no idea as I only have Jude to judge them by. Is it because it’s funny to get a reaction out of people?

 

I engage with Jude as much as I can. It’s hard when you have a million chores and things to do, to dedicate as much time as is necessary for a child like Jude. This morning, when only Jude, Emmeline and myself were awake, we played a game of snap and it was hilarious! Jude was cheating, Emmeline kept running off with the cards and everyone laughed a lot. Emotions: positive!

 

Bad picture – it was so flippin early, it’s rather¬†nighttime-esque.

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It appears the key with Jude is one to one care but sadly, I can’t do this all the time and for that I feel guilty that I’m not fulfilling his needs.

 

THIS is why Jude needs his Support Worker time. He’s there at the moment even though sadly, his usual pairing isn’t available today. He loves going to Jubilee House as it’s relaxed, he gets lots of attention, chats and plays with the other children; it’s so wonderful. Having visited a few times, I always sense the loving and caring atmosphere the minute I walk into the garden.

 

It’s hard to take care of your own emotions when you have a million other things to focus on however, it’s vitally important. I know I am rather hypocritical in this statement as I am known for not doing anything for myself however I do see the effect it has when you just continue to plough on through with life. It’s hard and not only do you need a break, you need sustained support, exercise to clear your mind and body of negativity and decent friends and family around you that you can rely on and not feel guilty for asking for it.

 

There is very little emotional support out there for the parents unless you search it out and find it. I have tried and failed. Amazingly, having called several times, I finally spoke to someone in the social care department at Herts County Council on Friday. I was full of emotion and this emotion soon turned to the despairing type as the woman told me to not interrupt and let her finish her sentence. She reiterated that Jude already gets 100 hours a year in support and what is it that I want? Now, I’m not sure what the worst thing about this entire conversation is. 100 hours a year to her is clearly a lot. To me, it’s 2 hours a week. What the hell can I do with 2 hours a week? I tried to explain that for Jude to have experiences as close to those as non-disabled boys his age, i.e. going on outings with friends, etc. he’ll need more than that. Maybe half a day each week would be amazing?

What also concerned me is that she was talking on the phone to a potentially incredibly vulnerable human being and her tone was such that she came across as utterly exasperated at my demands. Was I really asking for much, requesting a few extra hours for my son? We are delicate at times and you never know when you are talking to someone so on the edge of sanity, you may rock them one way or another.

I also mentioned that during the entire 6 week long summer holidays, I had not heard from anyone to make sure we were all ok and coping well. Considering the nature of their job (social CARE), I would have thought it would be considerate to phone everyone on their books to make sure the children were coping with the change of routine and that the parents hadn’t topped themselves yet. It can be as serious as that but they just don’t care!

In the end, we completed the conversation with me feeling terrible again (I’d swung from hopeful to upset in about 10 minutes).

 

Anyway, I want to highlight the emotional needs of parents with learning disabled children as we often go forgotten. If you know someone with a learning disabled child, please just do one nice thing for them, however simple. I can guarantee it will make their day.

 

It's nice to be nice

 

A x

Tammymum

Comments

  • The UnNatural Mother on

    Oh Alice , You have just ruined my facemask. Im sat here with Bodyshops finest on my face and your blog is making me cry. I want to reach through the computer and hug you.Im shattered 24/7 and neither of my children have additional needs so my heart goes out to you. Keep fighting,you/Jude need extra hours with his Support Worker.Of the experience i have had in this area it’s the person who keep chipping away at them that gets it. So get a chisel and get chipping !!! Sending you lots of love X X X #FamilyFun

    • admin on

      Thank you, that’s very kind. I am chipping away and amazingly today the SEN team actually called me to suggest a meeting! *gasp* xx

  • tammymum on

    Oh lovey, you were not asking a lot at all! The parents needs are so very important yet so overlooked, I wrote a post about this myself. My mum was a carer for my severely disabled brother and after 18 years it really took its toll. She used to get an evenings care once a week and a one weekend in every 8 I think, it sounds a lot but in reality with two other young children it wasn’t, so 2 hours a week really doesn’t sound like a lot to me. I really hope you do get some more hours soon xx Thanks again for joining us at #familyfun, hope to see you again next week

  • Two Tiny Hands (@IsntitprettyKTB) on

    Oh gosh, sending big hugs out to you. Any important conversation never works on the phone and they should know better than to talk this badly to people. Two hours isn’t a lot and I hope that you are able to get more for Jude soon. It shouldn’t have to be the parent that chases for this.

  • Two Tiny Hands (@IsntitprettyKTB) on

    Forgot to say thanks for linking up to #familyfun!

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