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.

Mary, that is exactly how I feel. I feel like I can't express my angry or sadness or even jealously because the moment I do I get this overwhelming sense of guilt. That I should be grateful for the child I have as so many out there don't have children. Even writing this thread has me feeling rotten with my admittance.

I suppose it also has a lot to do with outside views as our extended family as well. DS was always a big baby, he was 11 pounds on birth and even now looks older than his actual age. Strangers comment on his lack of interaction with them, lack of smiles and odd behaviours ( he gets enamoured with lights and just stares at them and then won't respond to his name or his does a funny little wiggle when he's excited about soemthing ) and how such a big boy should be doing this that and the other already.

Our family are worse though. Some of them can't accept it and very old school beliefs about autism. Some believe he will grow out of it, some believe he is far too young to have autism, some think he just couldn't possibly have it, some tell me it's my fault for not stimulating him enough as a baby, some don't think he should be near other autistic children incase he copies them and gets worse! These views and comments really get to me and I do end up snapping at them as I just can't have others judging and undermining him already.

You will find your allies and learn to manage the people who don't have your back. Sounds daft but people really will show their true colours.

We found that challenging blatantly inaccurate stuff made a big difference, might be worth sharing written information around ASD.

On FB there are lots of groups and sometimes sharing the daft little memes can just prompt people to think before they speak / act.

Yes facebook is where it comes into.its own for support groups there are some great ones and not so great ones but usually something out there for everyone.

Your feelings are exactly how I felt when my DD was diagnosed with a brain disorder at 1 year old. I just wanted to add 3 things;
1.See if you can learn makaton, this helped my DD enormously when she was your son's age and getting frustrated about not communicating. She eventually started talking and walking at age 4.5

1. You should apply for DLA!
2. Get involved with other parents ofSN children! They will help you, support you and understand you. Also ask them for help in filling in the DLA forms - we love passing on what we have learnt and stop someone else having to jump through all the hoops.

Good luck! You have some challenges ahead, but no one was a prouder mum than me when my DD got 'average' on her school report, and those days make the hard work worth while.

You ANBU, I used to feel the same ( still do sometimes ), it has go easier as the dc's have got older, I don't feel as jealous, sometimes I actually feel great fun that I get to feel extra proud when my dc's does something good ( something as simple as getting through a meal out without any incedents is huge ), my dc's are amazing, unique and inspirational, yes they can't do everything that other kids do but they are bloody amazing . It's ok to feel sad, angry and jelious.

Just quickly as I'm making dinner but we've just been awarded DLA for DD(2.2) for ASD and she's not been diagnosed yet so go for it.

Following on from User's suggestion of Welcome To Holland, there is the response from another parent 'Amsterdam International' which you might find you empathise with. niederfamily.blogspot.co.uk/2010/10/amsterdam-international.html

It is grief, its a sensible and normal reaction and it's absolutely ok to feel how you feel.

I have no direct experience of having a child with an asd diagnosis, however, as a teacher I have been a little bit involved in the process of diagnosing a few children with the condition.

What I have generally observed is that although the parents are unsurprised, they all know before the diagnosis that it is probably asd, many are relived to know it's not just them thinking something isn't quite right and that they can now access help. Most also go through a sort of grieving process. Not at the loss of a child at all but the loss of some of their hopes, dreams and expectations of the life their child will have. It takes a while to readjust the vision of their child's future and sometimes their own.

It doesn't mean they love their child any less, it's just it takes time to readjust.

Give yourself time op 💐

Rumple, I'm sorry you feel so sad but it is perfectly normal especially so soon after diagnosis. My ds is 21 and I still have times when I'm sad (birthdays or milestones sometimes get me maudling)
I can tell you about ds if you want so that you can see that it's not always easy to predict the future.
Ds was diagnosed with moderate autism,learning difficulties and extreme challenging behaviour before his third birthday. He had no speech,he had no interest in other children and he couldn't tolerate hugs and kisses from me.He was either silent or more frequently screaming with rage.
He started to speak when he was five and had "normal" speech at seven (by normal he could speak in long clear sentences with a good vocabulary, he wasn't really into conversation and the monologues on his interests came later) He toilet trained at eight.
Ay sixteen he gained 8 GCSE's and now at 21 he's just got offers to attend university next academic year. Yes he's got there a bit slower than his peers but from where he started he has done exceptionally well.
Your little one is very young, no one can predict his future,he may do the same as his peers one day or maybe he won't what I do know that whatever his path you will be there cheering him on and at times you will feel so proud your heart will burst because I've done the same.
Be kind to yourself and allow yourself time to come to terms with your little one's diagnosis

Glint, I'll need to talk a look at that link as anything would help.

I defiantly do need to get to one of the parent support groups. Despite my fears I know it would be best for myself and DH though I know if I start talking about this I'll start crying and probably won't stop.

Motmary, funnily enough I've been doing some research on makato as a good number of websites recommended it for non verbal children! With the DLA I wouldn't have a clue what to write as I'm not sure what would make DS's needs so different to another toddler, our GP seems to think it is a waste of time because of that and his age.

Though I'm defiantly making myself worse in terms of family. I feel like DH and I are the only ones defending our DS as everyone has an opinion on everything we do for his autism. Music therapy? Terrible idea according to them. Speech therapy apparently he doesn't need it as some 'normal' children don't speak until they're 5. This is another reason why I might get off Facebook even though I've seen a lot of groups, I've posted a few support memes to which some family have commented asking why I'm posting this or mailed me saying its inappropriate posting such personal things about DS....

I understand OP. My 6 year old was diagnosed a year ago ... formally diagnosed but it was nt a surprise. I was shocked, but not surprised.. that is the best way I can explain it. You are grieving for your hopes for the future as well. It DOES get better- and going to support groups and reading etc I found empowered me as a parent. I still feel grief when DS is so obviously behind his peers.... this week has been a tough one in particular.... he brought home the class bear and cannot write a single sentence or even a few words about what he is doing, and some of the other children have written reams and made up stories. It is things like that which makes it all hit again.

I also find that now you know it makes it easier to access support, and then things do open up for you. But yes, there will be moments that will be hard. Don't be too hard on yourself.... let yourself feel your feelings. One thing that helps me is kknowing that at the end of the day DS is my perfect little boy. He really IS perfect just the way he is.

I could write this post everyday at the moment. I've three children Who are 7,6,3 and my middle child was diagnosed as having autism last year and it also looks like my youngest has autism aswell. It's very hard to come to terms with. I'd just about dealt with it with my middle daughter but with my youngest it feels like a horrible blow. I've tried support groups but it's hard when people have older kids, different disabilities I feel I just got nowhere. I could cry. Our speech term think because youngest doesn't talk they shouldn't bother and we've been left to it. Hugs. Everything you feel is very normal. If you need an ear please pm me xx

That is great rumble - I haven't seen it before but it is spot on

Insan, I'd love to hear anything from anyone who's willing to share. It helps me shake off the future I've set myself on for us all.

Msqueen speech therapy is really important,especially for children who have no words. I'm pretty sure much of ds's success is down to him having an amazing speech therapist both when he was small and then later at post 16 in his specialist school.
Cerebra and the Caudwell Trust used to do a grant for speech therapy input,I'm not sure whether they stilldo but it'salways worth a look

Also very sorry if I get behind in replies. I'm currently researching links you all have provided.

Op my dd has Asd, you GP is wrong , just from the little you have written it is likely your ds would qualify for dla. The cerebra guide is excellent, also one of the local charties ( from your info pack) may well help you full in his form.
Caudwell children also provide support and funding. Also the family fund give grants though I don't think it's for therapy , more for things like an iPad or a holiday.

I want to offer you some reassurance OP. My DS was diagnosed at 3 years old. How you describe your DS is how I would have described mine. Two years on, having attended lots of courses, learned about sensory disorders etc, my DS is a very different child. High functioning and at mainstream school, while he is behind, he will catch up eventually. Yes, it's difficult, yes there are a lot of problems, but I am a lone parent and I cope very well. The beauty of diagnosis is the doors it opens. I sincerely hope you get as much support and help as I have had. There are loads of resources available and once you are able to come to terms with things, you will find yourself better armed.

Also, PLEASE make sure you claim DLA. You are absolutely entitled to it. Mine goes towards sensory items for my DS and allows us to have trips and things I might otherwise not be able to afford. If you are a tax credit claimant, you will be entitled to more by virtue of your DLA award.

Finally, please don't listen to well meaning ill educated comments. I have developed a very thick skin and you will too!

Good luck

You sound very much like my DM when my DSis was diagnosed. I hope you don't mind me copying and pasting Welcome to Holland by Emily Perl Kingsley. My DM felt it really helped her come to terms with how she felt.

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.

Op if you emphasis any therapy you do with ds or any " behavioral issues" time spent calming him down etc.
Mobilty is from age 3 however if you have to carry him places that would count within care needs.

Have to say I hate "Welcome to Holland" always found it so twee but did read Welcome to Beirut which seems a more accurate portrayal of what life with ds has been like.