Ashamed of myself.

Vicjoy, your post just really hit home for me as that is exactly how I feel at the moment. My daughter is almost 4 & hasn't officially been diagnosed yet but it's looking very likely she will be soon. I too have withdrawn from toddler groups etc because it hurts to see all the "a typical" children bringing their mummies pictures, shouting mummy etc & my little girl sits on her own & lines crayons up or peels the paper off of them without uttering a word to anyone. It breaks my heart everytime someone starts on about how much their child does etc. I wouldn't change Ella for the world but I just sometimes wish that she was just like everyone else's children. I hate myself for it after & tell myself that I cannot change things I just have to deal with it but it doesn't take away the upset & hurt everytime I have to encounter other parents.   

It's nice to know it's not just me who feels this way. x

Hi Micro, I also feel sad. If I had the opportunity to take autism out of him, I would in a second. I love him no end. I must tell him I love him about 10 times a day. 

People keep saying " be proud" this causes frustration in me because I think " be proud? be proud of what exactly?" I feel proud of him for being such a good boy, for being nice with other children and to people in general. I am VERY nervous about how carers at school and kids will treat him when he gets older. But I doubt it if these feelings will ever go away. 

I was told by someone that when your kid is diagnosed as Autistic we naturally go through a greeving process, I think this might me slightly true with me. 

I was shown the "Welcome to Holland" clip on YouTube and it just hit the spot.

http://www.youtube.com/watch?v=r15PuYoID94

Vicjoy. I feel the same. I've thought about this a lot because it doesn't sit right with me.  I've met some amazing people with Autism. I thought I genuinely believed difference was interesting and good, so why should I be sad about my son?

Seeing typical kids reminds me that my son has challenges to deal with and I feel sad that he will always have it tough. Seeing parents with their typical kids reminds me that I may never know him and understand him in the same way and because I love him, I want to understand every little bit of him. I'm not sad he is Autistic, but I am really sad about the bad things it might mean for him. I don't want to change his differences but I really wish they didn't cause him so much distress.

Hello, I'm a newbie... 

When my boy was 6 months old he started to shake his head a lot (mostly at night when he was tired)... I took him to his Health Visitor who assured me he was fine. I went back after his MMR injection because he by then had stopped talking, she did a quick examination (flashing a light in his eye and measured his head) she said he was fine. At 16 months I went to a lady I know whose son did the exact same thing and at 25 months started talking out of the blue, which reassured me a great deal.

Finally I got to see a great Dr who also has children and she took me seriously and said she wanted to send him for the "full works" but my son produces a lot of wax and is awaiting an appointment to go to hospital for an ENT examinations to see if he has glue ear, only after all this has been done will he be assessed for autism

So far I haven't told ANY friends or family. I have told strangers though and 2 friends who are social workers and careers to disabled children and adults. One of them keeps saying: "Stop being embarrassed and ashamed and just tell them". That's not the point. 

The point is. I live far away from my family. I am English but grew up abroad and there is another reason... that being that my son was very advanced, more than all the babies around me at the time. ie crawling at 5 months, saying words like: baby, momma, dadda, water, no, good morning at 6 months, by 7 months he was crawling up AND down the stairs etc etc so I was unfortunately one of those mothers who would share my sons millstones and this ended up upsetting other friends who have babies... mainly my husband's friends and a competition about whose baby was doing what first started. Now (2yrs on) if I tell them that my son has stopped talking completely, isn't ready to be potty trained, won't point or come every time I call him I  am dreading the backlash. I know that I'm being ridiculous but that is just how I feel. 

Being brought abroad I learnt different languages, my husband is a foreigner and has  Aspersers (I have only just discovered this), he has a very high IQ and we would talk to our son in 2 sometimes 3 languages and would talk about what he would do when he was older, which language he would learn first etc etc and now we are thinking: "Will he eat today?", "will he be bullied for being different?", "will he get married and have meaningful relationships?". Our lives have tipped upside down. 

I would like to hear from other parents... how did you tell your parents, family and friends? Did you keep this from some people? What responses did you get?

These are my sons symptoms:

Spinning with his eyes to the side of his eye socket in the direction that he is spinning in.

Jumping when seeing something he likes (milk, TV, cookies, cars).

Not coming when I call him 90% of the time.

Lining his cars in a line over and over again.

Doesn't have a big appetite.

Won't point

Will bring me what he wants instead of asking

Won't wave bye-bye anymore

GOOD POINTS:

Smiles and laughs A LOT

Will come to me when I tell him off (as if to say sorry)

Will put his cheek on my mouth and pull my face towards him for a kiss when he wants one.

Loves cuddles

Loves books

Is VERY strong

Knows what he wants and goes and gets it and solves problems to get what he wants... (will get a box to climb to the shelf)

Any thoughts on this? Sorry about it being long ( I had a lot to get off my chest)

@vicjoy I thought the same thing as Scorpion. Maybe it's one of those things that are confusing and take time. :-( Don't be ashamed. If you see a child that is really impressively mature, ask him whether he wants to be your son's mentor for a while. A mature teenager might consider that a compliment and actually do it (well, totally depends on the kid's character, of course, your call).

@Amanda Hah, that story is great! Somewhere I also read a story like, every one is on boats in the ocean and a few are on bicycles on land, and while it may be fun to jump off a boat for a swim, it's no fun to jump headfirst off a bike, but that doesn't mean that bikers are jumping "wrong".

It's nothing to be ashamed of, it isn't that you don't love your son but as the previous post states you have a sadness and grief about all the hopes and dreams you had for your son. I often feel like that about my son and I feel it more often when everyone is bragging on facebook about their children and i see children the same age who don't have the same struggles.

I often think about that piece of writing:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Amanda xxx

Don't be ashamed. It's a natural reaction. Like a kind of grieving - for the son you don't have. Don't beat yourself up about either feeling like that, or having the son you have rather than the one you grieve for.