In a way I'm grateful... But then again!

Hi all,

My 5 year old son was diagnosed with ASD in Jan 10 and I'm just coming to terms with the diagnosis. I'm currently seeking out as much information as possible. I've yet to take the early bird plus course but at least I've now registered on the waiting list and stopped making excuses about why I couldn't go on the course. I've spent a good 12 months trying to just get on with life, I decided not to tell anyone about his ASD except both mine & my husbands parents, his class teacher and my best friend. Although an incident at school meant I had to then inform everyone formally.

My son is such a social child, he's so loving, he's doing well at school and he is so polite and kind all of which I'm grateful for.  However these fantastic attributes mean that he is not statemented, and allowances for his shortcomings aren't made like they are for the two other children in his class. 

When he was diagnosed the Paediatrician said that his 'traits' would become less and he may even 'grow out of' them.  I hate to admit I believed her.  However his traits are getting worse, and having now done some research I can see more little things that he does or did in the past which helps me accept he won't ever 'grow out of his autism'.  I'm ashamed to admit that makes me very sad.

My son has very big meltdowns that can last hours and hours BUT I'm proud to say for the fist time ever he had a meltdown at the supermarket yesterday and I didn't get stressed out about it. For once I wasn't embarressed or upset I dealt with it and we then went on to have a nice shopping trip.  Ok I know I should be used to it by now but I finally realise he can't help it... he's not doing it to be naughty he just doesn't know any other way to communicate.  This was such a revelation for me!!!

I'm so grateful for all the lovely things my son does and says I'm so grateful his ASD isn't worse but sometimes I wish I could get the help and support he needs so much more easily. I feel like I'm fighting constantly for any help or assesments because he 'isn't that bad' (as everyone keeps telling me).  I'm sorry if that sound awfully selfish or offends anyone that is not my intention.

Living with and caring for a child with an ASD is a challenge I finally feel ready to tackle. I'm even considering getting my 3 year old assessed as he shows many traits too. Although how much of that is copying his Brother I do not know. Only time will tell I guess.

I'm not really sure what the point of this post was, but I kinda feel better for it!

Thanks for reading.

Emma.

 

  • Hi Guys,

     

    I've not been on for a while... life seems to have taken over a bit.  I was just wondering how everyone is getting on. 

     

    Hope to chat soon. xx

  • It is an established myth. I guess that because diagnosis at school age has rocketed it has enhanced the perception of it as a childhood problem. Also school tends to bring it out as you are stuck there all day, you are in the most critical phases in a lifetime of needing peer approval (and therefore most readily singled out as different) and expected to conform to rigorous authority including how you walk down a corridor.

    In adulthood, though diagnoses is becoming more frequent, there is very little infrastructure yet for adults. There are more options where someone can fit in some way or other, so the pressure of school is alleviated at least for some. Often the available help is for mental health and anxiety rather than aspergers. Many GPs seem convinced it is a childhood thing. Little provision is made. So the myth is established that it is something you grow out of.

  • In the last few weeks I've been discussing my son's ASD with a variety of people.  I've been greeted with a few different reactions BUT my parents are convinced he will 'grow out of it' even having discussed it with them, explained it all and offered them things to read they still don't seem to believe me... cold they be going through some sort of 'grief'?  What do you guys think? 

     

  • You're def making sense totally understand where you are coming from. I've had a bad day with Tom today. He didn't want to go school dinners but i asked him to try for just a few more days. Left him at school, got a phone call 20mins later to say Tom thinks he is going to be sick, can I come and get him. Brought him home and he says to me, it was a fib, I'm alright really. 

    He has been so naughty today though. I think that one thing this morning put him off balance and sent him spiralling. He seems a bit calmer now at last. Bless him

    Hope you had a good weekend. We are fitting a new kitchen, so with the boys running around too it is great fun :)

     

  • Isn't it strange how good it feels to know that you aren't alone with it all....  iykwim?

    I've found a couple of books really helpful.

    'How to live with Autism and Aspergers syndrome - practical strategies for parents and professionals. By Chris Williams & Barry Wright ISBN: 184310184x Publisher: Jessica Kingsley Publishers

    Austism Spectrun Disorders the complete guide. By Chantal Sicile-Kira ISBN: 0091891604 Publisher: Vermillion

    I really think that little bit of hope you talk about (about waking up one day and it being a mistake) is normal hun. We know it wont happen but you can't help thinking so many things, like what did I do wrong during my pregnancy, why me etc. But you know what I just feel plain guilty. Before we had a diagnosis for my son BTW his name is Robert, I was so so so strict with him, stressed at him all the time and just had no real connection with him, I really thought he was just a nasty little boy now I obviously know different but I do feel so awful for how I behaved. I was so concious of his tantrums and ability to flip out and hurt someone that at one point I dare not take him out.... he was 18months old!!! He was so violent. But ya know what i can't change that so now we are making to most of knowing that many things he does is all about the ASD and not him being a beast. I'm pleased to get a reason behind it all.

    I'm not sure I've made any sense!! I'm looking forward to chatting to you soon.

    Hope you are having a good weekend. 

    Emma. x

  • rachmama said:

    wow thats sounds like how I have felt my son had his diagnosis last year and I have cryed and worried so much I even had a panic attack and depression from worrying about it all my son is 9, but I am now learning about HFA and I wish people would not look at my son like he has 2 heads it really upsets me still, and I am coping much more now, havent told any one  about it , only my mum and dad

     

    Hi,  I know how you feel about not telling anyone.  We felt the same at first.  We did not want the other parents at school to know, I think we were scared that they would judge us.  Over time we have told more and more people and to be honest the more people that know the better we have felt.  It is not a judgment on us or our son, he has a condition at that is it.  I have not had one bad word from anyone and in fact most people are now more understanding or his ways.  I think they always knew he was "quirky" but now they know why.

    Try and find some local support groups to join it really does make a difference talking to people who are going through the same thing as you.

    Good luck.

  • Thank you to everyone who has posted.

    Candybomber I'll have a look at those sites thank you. x

    Ming I'm pleased to see you have made a step forward with Luke's SENCO. Fingers crossed Luke is now getting the support he needs. I've read a few books and they all say that the grieving process is normal... I can see it now but couldnt a year ago. Thank you for your post. x

    Rachmama thats why this forum is so good. We are all in it together. x

  • I understand exactly what you mean Emma. But i have told people so do at least get to talk to others about it, but mostly they say things like 'there is nothing worng with him' which just upsets me more. 

    I just ordered a book from Amazon yesterday called Parent's guide to Asperger syndrome and High-functioning Autism: How to meet the Challenges and help your child thrive. i don't know if it is any good yet as i have just ordered, but was really pleased to find something with high functioning in the title. 

    I have spent many a day crying my eyes out, including my last birthday when i got a report from his nursery, which really distressed me as the picture it painted of my son was not the reality that i know. I also keep thinking someone will say no he was a bit slow to start but will be ok. I know in my heart this is not going to happen but can't help hoping. I am really grateful for all the help we have been offered and actually really impressed with all the services. 

    Yes let's def keep in touch and see how are boys are progressing. 

    I met another Mum at my son's school a couple of weeks ago and her son was diagnosed at the same time as my son was a maybe, it was really good to meet up with her and chat. Might be worth asking at the school if there are any other HFA children whose parents would like to talk to others. 

    Knowing other people have the same things going on makes you feel so much better doesn't it. 

    Dear Ming, thanks for your post too. I hope your son gets what he needs, it must be hard feeling that you always have to fight. What you said about grieving for your son is exactly how i felt too, so confused about what the rest of his life would be like. 

    Dear Candybomber thanks for your post too, I will def check out those websites 

    Night x

     

     

     

     

     

  • wow thats sounds like how I have felt my son had his diagnosis last year and I have cryed and worried so much I even had a panic attack and depression from worrying about it all my son is 9, but I am now learning about HFA and I wish people would not look at my son like he has 2 heads it really upsets me still, and I am coping much more now, havent told any one  about it , only my mum and dad

  • wow thats sounds like how I have felt my son had his diagnosis last year and I have cryed and worried so much I even had a panic attack and depression from worrying about it all my son is 9, but I am now learning about HFA and I wish people would not look at my son like he has 2 heads it really upsets me still, and I am coping much more now, havent told any one  about it , only my mum and dad

  • Reading your post reminded me of how I felt when our son was diagnosed last year.  We knew what he had but when a label was finally put on him it was still a shock.  I felt like I was grieving, not for me, but for him.  Whenever we went to an appointment I was waiting for them to say no nothing wrong but they didn't.  Within a very short time of meeting him they knew what was wrong.

    Like yours our son is social (well sometimes) and seems to function fairly well.  He tends to hold himself together in school and have a complete meltdown when he gets home.  He tells me he hates going to school but when asked by the school or doctors he says he likes it.  I think he is scared of being moved as he is used to it there.

    At school parents evenings the best they can say is that he is not the worst in the class.  That is little comfort to me as I am sure with the right help he could be one of the best in the class.  Just today we have found out that a list of recommendations from his OT have been ignored by the school.  He can't have on of the things because there are only 2 in the school and they cost £30.  If they had told me they could not afford it I would have bought one myself!

    I am so frustrated at the moment but I need to get my head straight and find out what to do if they will not give him what he needs.

  • Just read your posts, Jambert and VickiE4 - hello!

    I'm not a parent but a good friend of mine is, so I thought I'd just chime in with a couple of bits of info in case they are helpful.

    Did you know you can get little business cards to give out to people if your child has a meltdown in public? See http://www.autism.org.uk/shop/books-and-resources-from-the-nas/general.aspx and look at the cards - there are three or four to choose from, according to your needs. I know a lot of people have found this simple device very useful.

    Also there's some useful info on travel/holidays at http://www.autism.org.uk/living-with-autism/out-and-about/holidays-and-days-out.aspx in case you haven't already seen it.

    Best of luck x

  • Oh Vicki, thank you so much for replying.  It makes me feel so so much better to know someone else feels the same.  The relief is overwhelming actually and I'm sat here typing with tears streaming down my face!!

    I know there are many many parents out there with children who have an ASD but everything is geared towards sever ASD's and it's so hard to find anyone or any information about or relevant to my child. I'm finding I constantly have to adapt everything to fit in around my son instead of just being able to read or hear about treatments and then apply them.

    I'd love to swap notes Vicki. I hope you get the answers you want in regards to your son. Good luck. I remember how stressful it can be.

    Hope to chat to you very soon.

    Emma. x

  • Hi Emma

    Reading your post was good for me as it seems we are in a very similar postion. My son who will be five in June hasn't been diagnosed but it is suspected that he has Higher Functioning ASD. Sounds very similar to your son, he is very loving, happy and polite most of the time, but the littlest thing can cause him to get very distressed. 

    We as a family are all trying to work out ways to deal with it. But I don't cope very well if we are in public. My husband wants to go to Cyprus on hols but the thought of the four of us on a plane fills me with dread. I know this is more about me dealing with it than my son though.

    I have more that I wanted to say to you but everything i type just seems very badly worded. 

    So i'll sign off and just say it was nice to see in words, how i feel and if knowing someone else feels the same makes you feel a bit better I am pleased. I'll be on here a bit. I'm finding this forum really helpful. So if you want to compare notes on anything let me know. 

    Vicki