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.

Hey,

I don't usually post but I felt that I had to here! My eldest boy sounds so similar to your son. He is autistic and at two he had no words and couldn't walk. He was in his own world that I didn't feel I could access. I remember crying after taking him to soft play with his cousins. He was so different! He used to sit in the ball pit making traffic lights out of the balls (he was obsessed with traffic lights that year!).
He is six now and he is amazing! He walked at just after two and a half and was just about there with his speech by school. He is still behind, but he is such a wonderful child. He is so happy, he has great ( if accidental) comic timing and he shows that he loves us in his own way.

I cried alot.....for a long time. I don't remember much of my daughters first year, because I was just so worried about my son. But you do start to feel better, and the perspective shifts. Every bit of progress becomes so precious. My son has made me a better parent and a better person. I wouldn't change him for one second, even after twenty minutes of minecraft chat (the current obsession).

Be kind to yourself. This is going to take time, but you will get there. Take whatever support you can. Go on whatever courses they can provide (we did earlybird, which really helped). Try signing, because communication really helps. There are also national autistic society support groups, which really help. Good luck! Try and enjoy your little boy, because mine is just amazing and I wasted alot of time with him worrying about what he wasn't instead of enjoying how great he is!

go to a few groups and parent/toddler, yes you will cry. Poor leader had me bubbling even when she asked what dc dx was. Everyone was lovely as everyone had been there.

Another one saying apply for DLA. The advice I was given was to fill out the form describing your 'worst' day. When I actually came to write it all out I realised (first child so I only knew him) just how much more I was doing for my non-verbal, non-mobile 2 year old than the parents around me were doing. Ignore your GP - you know your son and your life best.

Have a think about the things you think your DS needs (you've mentioned SALT and OT) and be a polite but persistent pain in the arse. Find out who looks after these services and start ringing. If they say 'you'll get an appointment within 12 weeks' put a note in your diary for 10 weeks time and if you haven't heard, call back. Leave voicemails until someone gets back to you. Sadly in this system the squeaky wheel gets the grease. It's clear from your posts that you're intelligent and can express yourself well - that is a huge advantage that you can use to help him. Put all British reserve aside and start pushing politely but firmly for what he needs. You will find yourself knocked back and messed around but I have learned to be very tenacious (and a bit sneaky) very quickly.

And yes to Makaton or PECS. A non verbal child is super hard but equipping him with a way to communicate his basic needs will make a huge difference. I got on a course via our local special needs service but there are loads of resources online - DS is now verbal but used signs for 'more' 'food' 'drunk' 'sleep' and it made a huge difference.

Drink! NOT drunk FFS!

Oh and on DLA - you will get it and it's not hard to get. We have the highest level for DS which amounts to about £330 a month I think. It's a lot about how much they wake up at night, how long it takes them to get to sleep, if they need help to be fed, dressed, getting about, etc.

Our local authority provided someone independent (I think they are called Contact a Family) to come over and help me fill it out. Took about 90 minutes together and within two weeks we were granted top level DLA with no questions asked. We spend it on private therapy sessions for DS, which really help.

I would recommend the early bird course think it's early bird for under fours and early bird plus course for four to eight o went on it through my son's special school it gave me a good insight into why he behaves in the way he does and how to communicate with him.

Yanbu - I have pangs like this now and again.

It's ok to not be over the moon your child has a more complex future to follow than most kids.

There's no shame in being sad, there's no reason to slap on a happy face when your not.

Oh and as for responses from MIL family, I got:

"There is no way that child is autistic. I PROMISE you he is not autistic. Stop saying you think he is because you are upsetting your DH."

"I don't know why you're so upset, it's not like he has cancer."

"His lack of interaction is because you don't interact with him enough".

"If you start feeding him home-cooked food not jars of food, he will be much better."

I could go on!

Sorry, this is my third post on this thread now so I'll stop - but just want to send you lots of support and .

I don't know why you think it would be impossible to get DLA in your area and you said you didn't want to give to much away about where you live so I respect that but if you did get it and you should you cab then claim carers allowance if your not working regardless of wether your partner works or not it's dependent on your earnings and you can earn just over £100 / week and still get it.

Also you said you were spending a fortune on sensory toys toys labeled sensory tend to be far more expensive then similar toys that are not labeled sensory I got ds a bubble tube from b and m bargains it's about four foot and it cost me £25 but it's not labeled sensory ,sorry if that sounds patronising I don't mean it to be

There are some really moving posts on this thread. to all.

rumple I am also in NI and I'm pretty sure the DLA application isn't any different to other places. Ignore your GP, they know nothing about the processes.
Your DS has a diagnosis and you can attach a copy of his report from the Autism team to your form.
It is emotionally very, very hard to fill in the form but when you start to document everything you can easily demonstrate that your DS already needs so much more care than most 2 year olds.
Can he ask for a drink, go to the toilet without a lot of help, can he be left with anyone other than yourself or your DH - would they understand what he needed? Does he understand danger - fire/traffic/ heights? Does he show signs of stress in situations where other 2 year olds are fine? Does he sleep through the night, of he wakes can you get him back to bed? There are questions about these sort of things.
You can do it yourself, though for the first time it is great if you can find someone to help you. Money doesn't cure anything, but having a child with
special needs can be very expensive, so it definitely helps.

Sorry i see you have said you are in NI I have no idea how it differs from the rest of the UK but as part of the UK your ds really should be eligible .

Sorry everyone, I haven't flounced. Just battling DS's night time routine! This thread has been such a tremendous support for me and now DH too, he's currently reading through all the replies!

Dimple, Drum, when we were first told DS's diagnosis I cried there and then in the office. I bawled like a baby sobbing about his future and how we would cope. Then I started to blame myself, it was ridiculous but I thought there had to have been something I could have done to prevent it but there wasn't and then it started to kick in that the child I'd imagined wasn't the child is gotten. Which started a whole new circle of guilt! Is you MIL mine? They sound exactly the same! Mine has come off with those very phrases! My favourite is "He'll grow out of it." Which then turns to "Well, it's your fault for not paying attention to him and going to school." When she's told one can't grow out of ASD.

Tiny, I'm sorry but your 'drunk' mistake made me laugh! Can I ask did you find it hard to reach your DS makaton? My DS has little to no attention span and gets frustrated so easily. Even thinking about teaching him is stressing me out. Though I'm very well aware of the battle I have ahead of me but I'm willingly to fight to get what DS needs.

X2, I've only realised now that when you out sensory infront of a toy it becomes encrusted in gold. I found this out by comparing the prices of some sensory websites to eBay! I felt like such a idiot. To explain the DLA, I live in Northern Ireland. Our economy has gone to the dogs and the cuts and revaluations to disability benefits has become harsher/stricter. Our system really has become worse and combine that with our GP thinking there isn't any chance I just feel nervous about the whole process and think we will be rejected.

I found that out laSt yr rubbish isnt it I would give the dla form ago 8f you don't get awarded it appeal you should be entitled even in NI in my opnion get help doing the form though.

Bubble, with how our system is with the cuts and revaluations to the disability benefits I just feel a bit hopeless. That and our GP has said we need an NHS diagnosis and not a private one as they are not accepted sometimes.

X2, I honestly couldn't believe the price difference when you put 'sensory' infront of a toy label. I got a bit standby as I felt it was having some people on. DH and I have talked about the DLA form and he thinks it is worth a shot!

Good my ds gets MRC and LR mobility now he probably should get HRC but I got a really long award untill 2026 so don't want to rock the boat he gets £300/ month and I get carers allowance so that's an extra £500 and odd in all so could make a big difference!

rumple feeling hopeless is just part of the awfulness you are going through :(

You may already have been pointed in the direction of Autism NI I have no direct experience but do know people who have had a lot of help from them.

Does your son have a paediatrician ?if not you should ask to be referred my gp is a great gp but doesn't really ' get' autism mu son's paediatrician however has been fab in getting us the help we needed.

Just a quick one, as have to go to bed ...but your feelings are all completely normal and understandable. Please don't be hard on yourself.

Re: DLA - your GP is talking bollocks. I was told the same thing by my GP. Didn't apply. A while later was told I absolutely should apply by a specialist autism support worker. Applied and got higher rate care and lower rate mobility, and my child has high functioning autism, so possibly your DS has higher needs than him. APPLY. Cerebra website has a really useful info pack on filling out the form.

Good luck and be gentle with yourself. Its early days and you need plenty of time to 'grow into' your DS's diagnosis and come to terms with your feelings x

X2, no he doesn't have a pediatrician. How would I go about getting him one? As silly as that sounds.

Mary, for me it's the feeling of having the image in my mind taken away. I had all these silly fantasy of DS and I doing this that and the other. He was going to be my smart, perfect little boy who was going to make a difference in the world...sounds very twee but now that fantasy has been taken away and I feel like I've lost something.

The future terrifies me though. I feel like he will be this way forever and will never progress. I don't know how he will be or who he will be and it kills me sometimes. I wanted so much for him and to think he'll never have the best makes me feel as though I haven't done my job.

Ask your gp.to refer you to.the community paediatrician or your health visitor can.

Yes, definitely go to GP and request referral to community paediatrician. Wait is not normally too long and they open doors to other services.

Try and see that your child will have other skills and qualities because of his diagnosis. For example, my DD is the kindest little girl you could ever wish to meet. And very mature. She's had to be because of all the doctors appointments she's had. Her diagnosis has had a large impact on this. She may never set the world on fire academically but she is loved by a lot of people and loves a lot in return.