The Blog post I swore I would never do !!!

My Son, My little man, there are thousands of children ‘like’ my son out there, each one different and individual but with certain things in common, routines, not having to deal with change, social interaction struggles and many more things which to us may seem trivial but they are not, we as parents work so hard for our children to be understood, to help them understand that they need to go and see the doctor/specialist/speech or just the every day thing like the dentist, for these children it is also best that they have the same GP or dentist.

I’m taking about children on the ASD Spectrum, our house is full of posters, calenders and other things to aid little man lead the life he knows and understands, people look at him and the usual words are ‘isn’t he cute’ 2nd meeting ‘he’s lovely’ and if your lucky you may get to see him a 3rd time and he may still be cute, but these people don’t spend the time with him and see his other side, knock on the door without his prior knowledge and expect him to tell you, your not welcome and never hever come back, want a hug and kiss? arrive on your own as the 2nd guest has no chance of it.

We as Parents spend hrs talking to him, writing things down (he can read extremely well), we make picture books with all the plans for days when going on holiday. He always visits the same GP, someone who he trusts and understands him (although he still has a ‘meltdown’ with him), once in an emergency we couldn’t do that and the one he saw, actually said she wont touch him as he may hurt her :(, we visited the eye clinic and he bite the doctor there but she was a lot more understanding, I could go on about the behaviour of our little man, he gets so frustrated and most of the time we don’t even know the triggers that set him.

OK I’ll get to the point about this post, we live 24/7 with very little sleep and very hyper little man and a very aggressive one, today I received a letter to inform us that one of the professional bodies who deal with him cant any more and we need to discuss further options, I’m angry in a way as they don’t understand the work we now have in front of us, I’m upset because as a professional I would have thought that they have been trained to deal with children and adults who require a little more patience and understanding and confused as to why after 5yrs they have decided that they cant do it any more, I will have a few answers by Wednesday but not sure if they will help on this occasion, I do understand also as it’s hard work and when it’s written down in black and white it brings it home that my child will always need that little bit more that we don’t think about everyday as we just get on with it and live our life through his world, the best we can.

We will continue to help and encourage him to live a life he can understand, we will also continue to treat like a child and when he misbehaves he will be told and an explanation given as to why he cant do that, we will also continue to help others understand him and to see things the way he does.

Thank you for reading my little rant, whilst eyes are leaking and hopefully I will feel better now, please feel free to comment.

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12 thoughts on “The Blog post I swore I would never do !!!

  1. oh angie ! life can be sooo difficult with our special children. i cannot even say it gets any better ……. sorry . but like you say we learn to live with the every day struggles, and struggles indeed they are. these battles go on mostly behind closed doors. the world doesn’t now what we go through daily. often times our children are labelled as rude, naughty etc but only we know the real them, the other side. the powers that be are beyond my ken. you can bet it all comes down to money sadly and not the lives of individuals . please know that i’m always here if you need to let off steam. my son had no help until he was 14 – no-one really knew about his condition when he was little so i cannot comprehend what it must be like to have help withdrawn as we never had any to begin with but i can totally appreciate that any help rescinded must be devastating. wishing you lots of love and the massive continued support and love of your family and friends. much love and hugs x

  2. I hear this so often. My wife works with special needs children at a local primary, children with ADHD, and varying degrees of Aspergers. Their parents fight tooth and nail for funding and it is so hard when it is withdrawn. I know you will anyway, but keep fighting as I think it some sort of test to see which parents really want and need it – they’ll take the support away from those who don’t put up a fight, and this is purely to save money.

  3. Lots of hugs for you, I live in hope that one day people will be able to accept and understand the special people of our world.

    “If a man loses pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured, or far away.”

    xx

    • Thank you, I to dream but don’t think it will be any time soon, I believe it should be taught then the children of our world will grow up better with knowledge and understanding of others differences xxx

    • Thank you so much, cant take all the credit I have a lot of backers and a lot of hackers but that’s the past, time to move forward πŸ™‚

      Take Care and hopefully one day we will get to say Hi in person xxx

  4. It is such a tough time and it is so easy for me to say keep fighting. But I do know how draining it can be and how knockbacks can hit you for six. Thanks so much for linking up to the BritMums special needs linky, I am so glad to have discovered your blog and that you are blogging about this. The community out there is incredible and hopefully, with our support you can get through this. xxxxx

    • Thank you, finding the BritMums round up I know is going to be an inspiration to me also, knowing I’m not the only one and seeing the Brave Mums and Dads writing about it frequently xxx

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