Life with ASD

Written by mummybird. Posted in ASD

Last week I met a mother at the park who’s little boy was about the same age as Little Bird and was diagnosed with Aspergers last September. We got talking about Aspergers and the appointments we are both waiting for and I was shocked to find out that like us the mother I was talking to had their first appointment when we did last February. We were both told we would be seen 6 months later for a full diagnoses, she had her sons appointment in September last year and we are still waiting.

On Tuesday I rung up for the fifth time to chase our appointment and I was told the same thing they always tell me. We are on the list and they do not know when it will be, I told them I was sent a complaint form in December last year but didn’t do anything with it as I didn’t want to complain I just want this appointment to come through. The lady on the phone told me to complain she said they rely on complaints to make things start moving so I rung up and logged my compliant. I now have someone going off to look into our appointment and then they will give me a call back.

Being around Little Bird is easy for me, the little boy I met last week at the park was incredible, his mother was describing her life with her boy and the things he could and could not cope with. She was really calm about it all and I was surprised to learn that although Little Bird is on the scale for ASD I am lucky in many ways with how he behaves. He is a loving boy towards me and I wouldn’t change that for the world. Little Bird does not kiss or cuddle many people because hes not comfortable with it, I am lucky that I get kisses and cuddles regularly from him without even asking. Where as the mother at the park had no effection from her son and that made me sad for her because you could see how good she was with her son.

Even though Little Bird has known my parents for the whole of his life he will not kiss them. So you can imagine how shocked I was when he started kissing and cuddling Mr M at the beginning of last year. The only other person Little Bird kisses is his father, as for cuddles, he will cuddle occasionally my Mum, one of  Mr Ms daughters and one of the neighbours little girls who he loves to bits and thats pretty much it. Big Bird doesn’t often get a cuddle from him, but I think thats down to brother/sisterly love!!

Little Bird has boundaries to what he can do, I know them quite well and can read him like a book in his day to day life. The main thing is to be calm with him, talk calmly, not to accuse him of things, not to rush him, give him plenty of notice when we are going out to do something and to try and understand the way he looks at things. I have lots of patience with Little Bird, I have to or else it would back fire on me and be alot harder for us all. I have tried to explain to the people around him how he works and how to get the best out of him. I do treat him different from Big Bird but I have too, if I didn’t then my life would be ten times harder than it is.

I make sure I explain regularly to Big Bird about whats happening in Little Birds life and how situations come about and how we need to be because I hope one day she realises that he is different to you and me. I know Little Bird has his boundaries but those boundaries keep moving all the time and it surprises me when they change. For instance Little Bird does not talk to strangers easily and if someone tries to talk to him he will shut it down quickly. Last week we were in the opticians and an older man started to talk to him. Now I was waiting for the normal response from Little Bird of “I am not talking to you, I do not know you.” but he didn’t say it. Little Bird surprised me and started to talk to the man. He held the conversation for about 3 minutes and I watched surprised as he sat there comfortably talking about Lego to this older man. When we were called into the opticians for his check up, I stood up and thanked the man for talking so nicely to Little Bird because most people who see him shouting out and wondering around touching things don’t want to even try and talk to him.

People are quick to judge my boy when we are out and about but it doesn’t bother me. They do not know him, they never will and I don’t expect them to understand him. I have had the looks off of other people where they are thinking he’s naughty and rude. He’s not naughty and rude, hes actually very smart, a bright kid with alot to offer and I feel lucky to have him. Yes he likes to touch stuff, everywhere we go he touches things and I can’t stop it. If people have a problem with it then so be it, I don’t have a problem with it he’s a child that has to do it so I let him where I can!

My children went back to school today, its the first set of school holidays I have had for a while where I have loved having the children home. Little Bird had a fantastic break and I got some quality one on one time with Big Bird which was lovely.

School holidays have changed now that I am working, I needed to get childcare sorted ready for the Summer Holidays so I settled Little Bird at the local out of school club and he had a brilliant time. The only downside is the childcare costs, it costs literally all that I am earning to put them in there, but it has to be done as I can’t expect my parents to do it all of the time. They have their own lives and I do not expect them to have my children every day just so I can work.

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Comments (1)

  • Rachelradiostar

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    What a gorgeous photo x as you prob know (?) I work in a primary school and in my current class I have six children with ASC ( we ‘now’ have to call it condition, not disorder! )
    Guess which children are my absolute favourites to work with! They all have different levels of difficulty with day to day school life and a couple have additional needs too. But with support from me and the teacher in class, they manage to make real progress in all aspects of school life!
    One little boy, whose Mum told us wasn’t particularly affectionate, regularly kisses me, strokes me and hugs me! I think he thinks, I’m his pet!
    I’m sure Little Bird will be absolutely fine! I hope his diagnosis comes through soon for you.

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