To feel jealous of other children and just want to cry?

[RumplestiltskinMissGold]

I'm sorry if I insult or upset anyone as this could possibly be a trigger for anyone with a child with a disability but I just really need someone to tell me I'm ridiculous and to woman up.

DS is 2 and a half and he has recently been diagnosed with ASD, the specialist who diagnosed DS says he portrays his symptoms quite strongly and she thinks he will always be a bit behind and possibly have a learning disability when he is older. He is behind in several milestones and he hasn't yet mastered speaking as communication and understanding is his main issue as well as some motor skill issues. He can't connect 'mama' or 'dada' to DH and I aswell, he can't walk unaided but he can crawl and he cannot point or wave, he has very little eye contact, he doesn't show affection or crave it but he does smile at DH or myself, he shows no interest in other children or playing in general just his own way which is usually mouthing or banging things.

We brought him to his normal soft play area and it was a little boy's first birthday so lots of younger children for DS to be around. The birthday day boy kept running around smiling, interacting, playing, hugging, laughing with his parents and other children while DS has no interest.

It is my fault I feel this way as I had this pre planned image in my head when I was pregnant and now it's gone but make no mistake I love my DS to pieces, he is our first baby but I couldn't help but get upset at all these other seemingly normal children. It is so hard sometimes as it just feels like DS is so detached from the world around him and us and I worry that he will never catch up with his peers. I know I probably am BU but I just feel so rotten and I know it is early days for him but I feel so bad watching these other children no matter how selfish it makes me feel.

Totally normal. DS was diagnosed with Down's syndrome at birth. First time I went to the supermarket after he was born I came home a cried and raged and sobbed about how unfair it was. Why me? Why us? I still have moments. He can't play outside alone. He's not toilet trained. But, but when he does achieve something the joy is 5000 times more.

The future terrified all parents with children. One day at a time.

No attention span here either - the Makaton was a long process. I'll look out some of the resources we used for you but in a nutshell i learned the sign for more and I said it to him a lot. So gave him a bit of his lunch and then said 'DS would you like more' and did the sign. And then waited without giving anything until he looked in my general direction to see why I wasn't leaping into action and said 'more?' And did the sign. When I gave him more I'd say 'here is some more yoghurt for DS' and did the sign again. It took a long time for him to get there but eventually he started to use it himself - i was sceptical initially but just having a way to give him a bit of ownership of his life was brilliant for me and also for his general mood and frustration levels. Giving tons of choices also helps - offering 2 yoghurts and saying 'strawberry or raspberry, you choose' helped him understand that it was in his interests to communicate with us.

Sorry if this is a bit much info when it's all still so new - my way of coping in the early days was to do stuff for him to make his life easier. It helped a bit.

All your feelings are natural, it is what you now decide to do about them and how you opt to handle the situation. You have to allow for the fact that you are going through a period of grief for the loss of the child you thought you had. That grief may well surface at other times, such as when friends children start school, later when they go to uni and so on. look up 'Chronic Grief' it may help you.
ASD is a spectrum of difficulties ranging from mild to severe.
There are loads of books out there some written by parents of children with ASD. Have a look on the NAS website.
Your son will learn to do many things, he will learn at a slower rate than others and he may not catch up but reach his own developmental level. How much he achieves can be helped by you. Learn about using Social Stories by Carol Gray, they help to make the world more predictable for children with ASD. Best wishes.

YANBU you are grieving for the child that would have been , like you imagine when you're pregnant the perfect child if there is such a thing. Your ds is very young yet and you don't know what hidden talents he may have, he may be different in some ways to other children but we fear the worst when we get the diagnose.I remember crying when the consultant told me my ds would never be able to love me and that children with asd use their carers so to speak as have no attachment.At time I was devastated and heartbroken , I had 2DC with asd and to be told neither could understand my love.What total rubbish that turned out to be, my dc both communicate in a way that shows warmth and deep down love.I know they both love me and their dad and animals etc.You are entitled to have all these mixed up feelings as well as an overwhelming love for your son, I too have gone through these similar feelings. I bet in 10 years time you look back and you won't believe how far your ds has come. As a family you'll get round obstacles so your ds can reach his full potential. Please don't be too hard on yourself xxx

Rumple, it's worth asking your local charities re DLA and also Carers Allowance. As far as I'm aware you are entitled to it and I don't understand why your GP advised against applying for it. My DS was diagnosed aged 3 and was awarded DLA in the same year. This might help with any private support you want to get for him.

YANBU

Hi, I know exactly how you feel - the first year after the diagnosis was the hardest for me. And I think everyone feels like this. There is a piece, by Emily Kingley, "Welcome to Holland", I think it captures this really well. Here:

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.

I have similar experience to Haud, DD's very bright and until this year there was a boy with learning difficulties in her class (he's been moved up a year now, with DC his own age), everyone was treated exactly the same, the boy's known as the Tickle Monster, as he chases everyone and tickles them!

Hi! YANBU. Sorry I'm so late to this thread. I hope you are still reading responses OP, because I have a longer term view than many and it's good news. DS2 is 22 and at 2 years 4 months old was diagnosed with ASD, later (around 4 yo) with LD & at about 14yo with bi polar disorder BUT he is the loveliest young adult: happy, smiley, great sense of fun (99% of time). Everyone who comes into contact with him forms a special bond and loves him for who he is. He is his own person, no use comparing him to others his age (though of course I have done over the years - it took a long time for that to sink in!). Contact NAS, if you haven't already, join a local group and you'll meet other parents in the same position as you. (((Hugs))) and feel free to pm me if you ever feel you'd like/need to.

Me too Maryz ...

Me too Maryz I once saw a poem Amsterdam airport which was far more apt I thought can't do links otherwise I would post it but it captured my feeling s at the time.

Me 3 Maryz.... I love my boy so much but I want him to be the child he should have been .. Life is so so difficult for him and I have to watch him struggle every day while my heart breaks for him a little more bit by bit .. And breaks for myself because life is so fucking hard my relationship with daughter isn't great because she finds him hard to deal with .. It's shite !

Maryz! Hi! So glad I've found you again (((hugs}}}, was wondering how things were - not tulips from Amsterdam

Don't want to thread hijack Maryz, but things not too bad on the DS front atm. DS1 is managing to hold down a marketing job in London. We've been through a spell of receiving shed loads of: speeding fines, parking fines, penalty charges for unpaid congestion charge & dart charges though - all his. For those on the thread who have mentioned siblings, I believe a lot of DS1's problems stem from me not being able to parent him properly due to DS2's more acute needs growing up.

Hi everyone,

I'm defiantly still reading! It's been an eventful few days and I wanted to give you all an update. I've went to our local job centre and picked up DLA forms for DS and even got some helpful information from citizen's advice though I'll be using the Cerebra guide to get me through this! The forms are daunting but I can get through it and really all they can say is no anyway!

I've managed to get our GP to cooperate a bit more in terms of DLA forms and even rendering DS straight to the Autism clinic instead of child development. I might have mentioned the possibility changing GP if she really didn't want to help! Immature yes, but it got the job done [big grin]. Instead of coming off Facebook I've removed those family members who have been nasty about DS's diagnose and answered honestly when they've called/texted about why I had the audacity to remove them, I think it's for the best as I can't post anything in support of DS without one vile comment. I'll let them come to terms with it on their own and I'll be here to help inform them if they want it.

Though I admit everything is still very hard. I'm still grieving for that perceived child that I lost and while I know DS will be so different and so wonderful in his own ways I think a part of me always will grieve. I still blame myself and I still feel rotten for crying about his diagnosis as he can't help it. I'm hoping being around other NT children will get easier with time as I can't help the comparisons or the urge to cry right now as it really does feel like my son is in a world I can't reach. I find myself thinking how could he possibly understand how much I love him if he can't process anything else.

The future still bloody petrifies me but I agree with you, Maryz. I hate Holland. I hate hate hate Holland and I'm ashamed to admit it. I want to go to Italy where everyone else is and where I was meant to be but I can't. I'm in Holland, stuck listening to people telling me it was meant to happen and only happens to ...special people. I'm that 'special' person stuck listening to everyone from Italy bragging about their little gondolas and worrying about such NT things. I don't want my baby to be different and be excluded or picked on for it. I don't want people to stare at him and judge him and laugh at him. I want the child he should have been but that's never going to happen and I feel like an irrational toddler having a tantrum at the moment.

Possibly the least irrational feelings ever , don't worry! I don't think any parent of an SN child could say they have never felt exactly that way and don't continue to do so to at least some degree.

It helps me to think that ultimately all we can hope for our children is that they are happy. And we need to lose our preconceived ideas of what that involves. I know so many NT people who are outwardly successful and have achieved exactly what their parent would want them to achieve - good job, house, marriage, children, etc. - but are unhappy. DS may never have any of those things but he is generally a happy soul and maybe he will be happier than many NT people because he won't have all of those things which we tend to all (incorrectly!) consider prerequisite to happiness. All we can do is help our children to be as happy in their own way as we can.

Well done on removing the difficult family members on Fb! It is sad they can't support you but they will have to come to their own acceptance of the situation in their own time.

I agree, Dimple. I think it's the perceived DS that causes me the most pain as I know I'll
never have that but I don't know how to stop holding on to it and comparing. I try but it feels like every NT child is thrown in my face even know that's not the case. .

I want DS to be happy but I feel like I don't know how to read him, how to reach him. I know I'll learn but I feel totally helpless when I can't communicate with my child and he can't understand.

I know exactly what you mean, I felt exactly the same. I found it so hard to be around other children DS's age. When I used to pick him up from nursery I ran in and out of there as quickly as possible so I didn't have to spend any time around them! It just gets a bit easier with every passing month is all I can say.

DS very much used to be locked in his own little world and although he still is to some extent, more and more he joins us in ours. One thing I remember upsetting me was thinking that he didn't love me. Then someone reminded me that ASD children have problems in communicating feelings - not in feeling them. And actually nowadays he is really affectionate and often tells us he loves us.

Also, DS used to understand not a single word we said, but his understanding is so much better now. He's actually got the best sense of humour of any child I know, which I think is quite something given his speech and language difficulties . Your DS's understanding and communication will improve every day, I am sure. Take one day at a time, be kind and gentle to yourself (and forget those family members who aren't), and keep posting and talking about it. You are not alone .

It is upsetting, especially when you don't know what the future holds for your child. My ds (5 nearly 6) was diagnosed ads age 2. He didn't speak till he was 3 and then was a couple of words. Age 4 he was dry in the day and all of a sudden he one day he came out with a sentence, I cried for ages and made him repeat that sentence about 10 times. He is now in mainstream school and can read and write, has a photographic memory which keeps me on my toes and is keeping up with the rest of the class. I thought he may never speak or go to school.
Get all the help you are entitled to, you may have to push for this depending on what your local authority is like, luckily mine were fantastic.

Good last piece of advice there Maryz, took me a long time to know to shout for help for myself in order to look after the DCs. Mainly came from other parents of kids with SENs as it goes, as well as DH, they've definitely been my sanity anchors.

My DSis has two children with ASD, one more badly affected than the other, who is likely to need some adult support. The early years with both were undoubtedly the hardest for her. She really struggled at times, although no one could ever criticise her determination, strength and passion for her DC. She just felt so horribly cheated.

Now the DC are older, she finds it much more rewarding as they give so much more back, and those difficult times are partly what has forged such a unique bond between them as they fought through it together.

Hang on in there.