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.

YANBU at all, OP.

I am sorry you are feeling this way. It is entirely understandable, and I remember it well from when my eldest was that age.

I have 3 dc, all with varying degrees of ASD. My eldest has severe ASD, with a severe language disorder and learning difficulties.
She is 11 now. Looking back, the preschool years were the hardest emotionally.

You are so close to diagnosis, and so close to that lovely cosy time when you had those wonderful dreams and imaginings of how life would be when your baby got here.
Be kind to yourself. It is a long journey.

YA so NBU. It is entirely natural to grieve for the child you won't have.

DD is now 16. She has ASD and LD. she has no friends and is unlikely to ever lead an independent life. Even now I sometimes look at her peers and think "what if"

But that is only fleeting.

I have a gorgeous, healthy girl, who will never hang around the streets, won't dabble with drugs, won't have sex before she's ready (boys are still disgusting to her ), gives me untold joy every day and is as sweet and lovely as she always has been.

Her brother was very challenging from about 11 to 18. She hasn't been.

I count my blessings every day.

Don't be too hard on yourself OP, you have so much to look forward to.

You are grieving for the child you dont have (or the image of a chld you dont have) - its entirely normal.

My DD was diagnosed with ASD and moderate learning diabilities. For the first year (maybe two!) I fought it against it (refused to believe it etc) but now I am glad that we have the diagnoses. It does help to access support. Try some support groups - it does help to meet people in similar positions but at different stages.

But whilst she is a long way behind her peers she is making progress. She can read, she talks - not a lot and not off of it makes sense but she was non verbal- and has friends at school. She is a lovely child and on a good day I am very proud of her. Its been slow progress, sometimes months where nothing changed and then sudden bursts of development.

There are bad days, days where she hasnt slept so I havent slept or the ongoing battle over toilet training, teaching her to get dressed etc feels just too much for me and I inwardly rage against the unfairness of it.

I will always wish that she was neurotypical - because her life would hold lesser/different challenges and selfishly because our life has been detrimentally changed by her needs. We're a family of four and there is no doubt her diagnoses has impacted on all of us. I will probably always lay awake worrying about her future. But I love the bones of her and she knows this and is a secure, happy child which is not bad I think.

My sister has only child who was diagnosed with high-functioning autism just after starting school. She had suspected something was wrong as he didn't interact in the 'normal' way and could still does have mega tantrums that you associate with a 2yo.

She has a hard time of it. He is extremely demanding. Many people, inc some members of the family, think he is very rude and naughty or spoilt but of course, he is the way he is because of his condition. I think living with him 24/7 is bloody exhausting and relentless. Luckily he is fine at school. Very bright so no problems with the academic side of things; problems are more of a 'social' nature.

She said she often feel guilty because although she loves him, she doesn't like him very much. I can totally see why she thinks this. Sometimes she says she feels exhausted at the thought of what the future holds (he is 9, so when he hits puberty, moves to a bigger school where bullying might occur etc). He is skinny and small but my goodness, he is as strong as an ox and he can be very violent with both parents.

She gets a disability allowance - is that DLA?

YANBU, you are grieving for the child you thought you had. It’s OK. You will probly find that in time you worry less about other children. But (years after my DS’s diagnosis) I still sometimes get a shock of grief when I realise something new that my DS can’t do. Though on the other hand I’ve had some happy shocks too when he’s done things I never thought he’d be able to!

Feel free to use counselling if you want. I saw a counsellor while my DS was being diagnosed. She helped me see that it was OK to feel the way I did and that it was OK to admit it to her. In fact she gave me a safe place to say some dreadful things, a place where I knew no-one else would ever be hurt by my thoughts and feelings - not my DH, not my DS, not my friends, not other people with disabilities or their parents. And after I had shared those really bad things with her, somehow it felt easier for me to deal with them. Some of them even turned into something positive.

I like talking to other parents of kids with ASCs too. There are all kinds of things we “get” because we’ve been there with our kids, or we’ve heard about other people who have. I kind-of know what you mean about not feeling loved, for a long time my DS didn’t show physical affection to me at all. Having a kid who can only cry must be so wearing for you, none of us want our kids to cry but you can only do your best. My DS could be very blaming and aggressive in the way he spoke to me and that wore me down. My counsellor suggested some things I could do to protect myself and feel less hurt by what he said. That was good for me, and good for him too, because it was easier for me to feel calm and unworried and not snap at him.

Take care of yourself, and if you haven't already been over to MN Special Needs you'll find people over there who understand

Hi OP. I haven't read all the replies as in a rush but I understand totally how you are feeling and went through the exact same emotions when my ds was diagnosed at age 2.

Not sure if anyone has mentioned it yet but have a look into ABA (Applied Behavioural Analysis) and Retained Reflex Therapy. My ds was diagnosed moderate to severe and was still non-verbal at age 3. I did the above two types of therapy and today he is in a mainstream school with no support and is ahead of his peers in a lot of areas. Although I can still see some traits, others are shocked when I tell them of his diagnosis - he really is indistinguishable from his peers - I really credit the above therapies - retained reflex therapy dealt with his sensory issues and ABA taught him all the things other kids learn naturally - most importantly it taught him the skill to copy and learn from his peers.

These therapies can be expensive but you can learn how to do the ABA yourself - or you can try and fight the local authority for funding. Check out ABA4All on facebook - lots of help and advice there. There is hope - it is just a long, hard road - but definitely worth it in my opinion.

Don't be put off applying for DLA-people always think that there can't be much proovable difference between an NT toddler difficult behaviour and ASD difficult behaviour. That's because they are ignorant.

My son got DLA at 2.6 yrs just as he was diagnosed.

Yanbu to feel gutted-I used to hate it when babies looked at me, a complete stranger, in the eye, when I couldn't get DS to do the same.

But DS is 6 now, still in nappies but weeing in the loo, full of language (including a range of shame-making swears), happy at his sn school, very loving and often very challenging, but totally loved by us.

We can enjoy him now in a way that I struggled to when he was first diagnosed. I felt overwhelmed and the grief was terrible. I have chosen to go to counselling and have been going for 3 years!! I didn't want to join groups so I pay someone to listen to me cry and mourn so that I can get on and enjoy the life and lovely child I have.
for you op.

Thanks guys through this page I have contacted Cerebra, I diddnt really know much about it.

Dont feel bad about the way you feel Op, I feel the same sometimes about my boy and how much it affects our family xxxx

MrsC, I have to admit the majority of of our income is going on sensory toys and the like. They're so expensive but DS loves them and I've never seen him interact so much with any other toys other than those with balls or wheels. He really seems to love the sensory items.

AndNow, I feel like we're not getting enough support from our GP in terms of applying for DLA though. If I'm assuming correctly they usually have to contact GP for confirmation? I'm not sure how supportive she would be.

Salem, I've just finished reading Welcome to Holland and user was correct in how much it resonates with the feelings in currently experiencing, the expectations I had and the grieving process I'm going through.

Can I ask you all though have any of you dealt with feelings of detachment from your children? I find the future and DS being behind to be hard to accept but most of all I find the lack of interest, lack of affection and sometimes lack of emotion so overwhelming because he's my little boy. I suppose it is selfish but sometimes I just want him to hug react when I hug him or kiss him and I know he shows his love in different ways but I just find it so hard to wrap my head around.

Ds is 21 and still doesn't do hugs and never has however I am now permitted to kiss the top of his head when he lowers it for me to reach. I ached for years to hug him but he can't stand it and I'd get hit if I tried so it meant the world to me when he chose to let me kiss his head (in a particular spot). I feel very honoured as he only allows me and dd 13, who also has ASD, to do this

MrsBob, because of his age our GP has made it sound impossible. But I've told her we're struggling with prices and sensory toys/equipment so that would be our only form of extra money. DH works full time, I am a part time student in my degree years so money is just slipping through our fingers. Looking at DS I'm trying to hard to think of what I would put on a DLA but everything sounds so NT toddler to me.

Isla, we're doing an ABA workshop which has crippled us but it outlines DS's needs and what he is behind in and these professionals teaches us what to do to stimulate and help him. We have our frost workshop on the 2nd so I'll know more then though I had originally hoped they would be more involved apparently they only teach us what to do. Until we see our child development team (we're on a very long waiting list) the choices of therapy are very limited here. I've had so many speech therapists turn us down because they don't think they are suited to DS's needs and others just don't qualify. So our only choice seems to be to wait.

Insan, I'm sorry. I know that ache. And that's what makes me feel guilty for wanting because DS lets me hug and kiss him there's just no response and he does eventually push away but I'm very sorry.

Ds got DLA from age two I just wrote what happened in a typical day. If your ds isn't walking yet that is a very big difference between what is typical for his age. If he doesn't talk or point then he isn't communicating his needs which again is very different from what you'd expect.Any therapy you do is again different from the typical child. If you don't feel your GP is supportive you can name another health professional to tell them about ds's needs.The Caudwell Trust funds ABA programmes so look on there and look at The Family Fund who make annual payments to children with disabilities to fund toys,equipment, holidays etc.

Rumple it's ok now I've come to terms with it and anyway he's a big hairy man now so he probably wouldn't be hugging his mum much nowadays anyway. It was so much more difficult when he was small cute and squidgy.

Dont best yourself up about the times you are feeling negative - it's so totally normal and there is nothing wrong with it as long as you can keep it in check. I think it's worse to try and pretend you are fine with everything when that's clearly not going to be true.

It doesn't mean you are not delighted and full of love for your son.

I'd come off Facebook if I were you. Your relatives sound awful. I'd try and avoid them. If you can't them I'd refuse to discuss anything with them.

Good luck. I hope everything works out OK for you all.

OP, I was contacted by a local organisation as soon as my DS was referred for assessment. They did my DLA application. I was awarded it even before diagnosis. When you come to renew and have your diagnostic report (please please make sure you get that), I had to fill in a rather large form but it really is not too bad. When I have a chance to dig out the stuff tomorrow, I will PM you. You can get help filling the forms in if you need it. Please please do it. Having an autistic child is an expensive business. You can also make your own sensory toys (good old Google again). It would be a very good idea to seek out a sensory disorders course, I did two, they were amazingly helpful and I learned a lot.

OP, you need support. Ask in your GPs office or your local SureStart Centre, preschool or primary school for referrals to support groups.

YADNBU. You love your child, but your life isn't how you envisioned it. It's ok to mourn what you thought you were going to have and come to terms with it. it will get better. It will just be different than what you envisioned.

Thanks MrsD it's a long time since ds needed the Caudwell trust didn't realise it had changed name. Ds got HR care at two and HR mobility as soon as he was entitled.I'm ex civil servant though so know what they need to hear and am good at the form filling

Have PM'd you...

Your DS has a diagnosis of ASD. The fact he's got a diagnosis now is evidence in itself that his ASD is quite obvious. You absolutely can and should get DLA. DD1 was 3 when I applied for DLA. By that time she could walk, had language but it was very strange (e.g. 'bowl-eat' was hungry), was delayed in all areas. She got high rate DLA within weeks of application. If you include the diagnosis report in your application, I doubt they would even contact your GP. Mine doesn't know DD1 from Adam!

I loved Welcome to Holland when I first came across it as a student nurse in a burns unit. So poignant. So true! So meaningful. I knew nothing. Strangely, once DD1 was confirmed as treading an unbeaten track in terms of development, I'd have happily ripped Welcome to Holland into tiny little pieces and feed it to anyone who dared to offer it as solace.

It does become your normal, but I find that I have seasons of being 'fine', then I see a child the same age as DD1 (she's 10 now) and I get such a shock when I see their freedom, their independence, their development. DD1 always seems to track at about half her chronological age in general, although some things seem static, such as danger awareness and impulsivity.

One thing that helps is that DD1 goes to special school. The school PTA put on a family disco last weekend. I can't tell you how awesome it was to see our motley crew greeting each other with pure delight and accepting the difficulties they each have as if they had no impact at all.

The peer pressure does ease as they grow up though. By the time your DS is in secondary there will be a massive range of abilities or lack off and parenting isn't all about " milestones". I think all parents will face disappointments in some way with their children because we are so invested.
Your DS will delight and amaze you. I have worked with children right at the hard end of the spectrum and even the "unloveable" ones had many moments that melted my heart.

What you would say on the form?

Tell us about difficulties with communication.

"DS has a diagnosis of ASD. As yet, he has not developed an awareness of the function of communication. Whereas most small children of his age would be able to communicate that they want something by looking at their parent, pointing to the object and confirming that the parent got it right, DS does not make eye contact, cannot demonstrate his wants and simply cries while I try to work out what he may need. It is likely that DS will need to be introduced to PECS (Picture Exchange Communication Symbols) but he does not yet have the ability to learn this and it will take intensive work from two adults to start establishing PECS as a form of communication".

The main thing is that you explain the difficulties, point out what a typical child of the same age can do and explain how much more time and effort it takes you.

YANBU but you wont necessarily feel like this forever

I know lots of people think its twee, but maybe google "welcome to Holland"
I found it helpful xx

I really am overwhelmed by the amount of support I've found on here. Like I've said before I really want expecting it.

If we try to apply for DLA I think we'll have to find support else where from another professional as our GP seems against it for one reason or another and I really don't think she'd help us, I'd feel embarrassed asking and have her reject us as I know how she feels about it. I think I have to take on everyone's advice about not feeling so guilty about mourning the child
I thought I would have as I know that will be the only way I can fully enjoy DS. Though I have to admit I'm still embarrassed about the thought of going to a support group incase I say something ridiculous.

MrsDeVere, would you have any tips for someone who has no clue about DLA forms or even the process of filling them out? I'm looking at some online PdF's and it seems like it's going to be one long process and battle to get anywhere.