Discussion forums

Needless to say we have not been back!

Mum to my beautiful DS aged 5 years (Moderate ASD)

All NT kids do some of the things our precious kids do to some minor degree, but boy oh boy am I sick and tired of hearing about it.  It makes me feel like absolutely nobody out there has any understanding of what our lives are all about, that we live ASD, breath ASD, and love our children so so hard that it hurts everyday.

It has been a slow road, but I now understand that friends with NT kids will never understand, that it is not possible for them to understand, and really, I don't want them to ever understand, because that would mean that they would have to enter the world of living with a child with ASD.  But on the other hand I wish they did understand because then maybe I wouldn't feel so alone on this journey sometimes, because although the comments are well meaning, they are actually quite hurtful sometimes because they belittle the hard road we all travel.

Im fortunate enough in that my DS doesnt have any behavioural issues (well not yet anyway)  but he does have severe communication delay, social and sensory issues so I must admit I havent received any nasty comments yet in shooping centres or playgroups although i do get the occassional stare.

What i wanted to share with you all was how my family (ie husband, mother-in-law, father-in-law etc) reacted when I broke the news to them about my DS diagnosis.

I attended the assessment on my own with no support and drove to my inlaws half an hour away in tears down a major freeway, stressed  and upset about what this would all mean for my little boy and his future. At dinner I got asked ' what happened at the docs today"? After I burst into tears and gave them the diagnosis everyone especially DH replied "Oh, so he is ok then, thats nothing' ($#*!) and they continued to talk and laugh over dinner as if nothing had happened!

For weeks they kept saying "its nothing he'll grow out of" or "all boys are late to talk" or "your making a big deal out of nothing/your over doing it" or my favourite from Dearest motherinlaw which was 'i raised 3 kids and there was nothing wrong with mine- you just have to talk to him more!'. So i totally understand where everyone is coming from. People really dont know when to shut up and mind their own business.

Perhaps we could all pool our heads together and publish a book called 'Got nothing to say then dont say anything!" and include all the MUST NOT's in it so they can leave us all alone!...

Zog.

These comments wear me down too.  I just had a rave to my husband yesterday about just this.  When I am hormonal it gets me even worse.  Thankfully I have a great husband.  Our friends and family all have dropped off and faded away also.

It does get lonely sometimes.

We all shoud give ourselves a break and a pat on the back as we are all strong and capable.

Zeeta.

Zeeta 27 NSW

I wish I had a dollar for every time people have said to me "REALLY", "AUTISTIC"! but he doesnt look autistic, honestly I cant see it!!! ARRRGHHHHH. At least if I got a dollar for every time I heard this it would help go towards the cost of all our therapy LOL

"No I'm just making it up so you pity us"

Honestly!, I know there needs to be alot more autism awareness out there, but still I wish people would just stop and think sometimes, some comments can be very hurtful and tug at the heartstrings.

and........ while I'm at it, I am sick and tired of people asking how we are going and not really having any interest at all!!!! DONT ASK ME! if your not genuinely interested. I have learnt the hard way people dont really want to know (well most, not all). I always make sure I put a positive spin when talking about autism and Toby, but you still feel people are frightened or just want to be in their own happy little world.

As for myself I find Autism so intriguing it has become a hobby (ha ha).

I really hope I can help others down the track and really make a difference

Mum of two beautiful boys!, DS1:Jake-6.0 Aspergers and  DS2:Toby-3.9 asd (MY POCKET ROCKET!!!)

I am sorry but I don’t want to be offensive either, however, I totally disagree with you Shane.

When people tell me that they couldn’t do what I do, it is a complete cop out.  How dare they, if they knew what it is that I do, then maybe they would not make such a comment, but they don’t know, so I wish they would get back in their box and tape up the lid.  It is a flippant, off the cuff comment made when a person can’t think of anything better to say in the majority of cases.  As for your excuse that most people don’t know even know what Autism is, then they should be finding out a little bit more about it before they make such a comment.  And maybe, rather than making such a stupid, ignorant comment, they should ask me what living with a child with Autism means for my child and our family first.

I agree wholeheartedly with Allycat “sincere praise given to parent of children with disabilities is very much appreciated, however flattery or small talk is not”.  VERY WELL SAID ALLYCAT!!

As for respite, I am sure, along with Allycat, I am not the only person who has found that many of the organizations are unable to cater to the needs of our precious little ones.  Respite sounds and is in many cases wonderful, however, after attempting to access respite through a wide range of services, I to, have been unable to find a service that can cater to our needs (and we live in Melbourne).  We also have no family support and unfortunately most friends have drifted away.

I really enjoyed your original post Allycat, it made me laugh, put a smile on my face, and in the true feeling of this forum, made me feel a little less alone.  Thankyou