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.

OP, you WILL be awarded DLA. Who on earth would suggest they are "against it"? I have never heard the like. Your GP is nothing to do with DLA at all! You NEED it to be able to support your child properly. I have PM'd you and will come back to you tomorrow with some more detail.

Cerebra do a very good DLA guide.

Ds was originalally turned down, he was under 2 and had/has no diagnosis,but on reconsideration was awarded hr care, so don't be put off

I will go back and finish reading thread now!

I've not read the full thread, but my daughter has cerebral palsy caused by a premature birth (27 weeks). It wasn't diagnosed till she was 2y3m. It affects her legs and nothing else, really. Her cognitive ability is not affected. I feel sad when I see other children moving freely and know that she has to fight for everything. I'm hugely jealous.

However, DD's condition is predictable. We know exactly what we are dealing with and how she will develop.

Not knowing the future stinks. If only we had crystal balls! You, quite reasonably, want to know what the future holds. You need to allow yourself a period of grieving for the 'perfect' child you had imagined. However, you also need to remember that your DS is still your DS, he just needs extra help learning some things. You will hopefully find a group of people going through similar - either locally to you (perhaps through a special preschool/children's centre) or online (I can guide you towards a good forum if you'd like, pm me). Then you can laugh, cry, share the baby-steps of progress they make.

Lougle, where I live DLA is almost impossible to get and my GP seems adamant that DS will get nothing because of his age. That and my lack of experience in this area puts me completely out of my depth even looking at the form online is daunting.

I'm hoping to apply for a special nursery here as I feel it will help DS immensely and perhaps ease my fear of him being behind of excluded by his peers. I get so damn happy when DS does things that he hasn't before, I cried because he finally mimicked me in pushing a button on his toy!

MrsC, I think she is trying to save us the lengthy application and then rejection but she has told us that because we got DS diagnosed privately we must get an NHS diagnosis as private diagnosis is not always accepted. We're currently on a lengthly waiting list for that too.

MrsDevere is right. Even now, at 10, DD1 can't connect that her poor balance does not go well with standing on top of a climbing wall. Her sense of adventure over rules her wobbles. So I have to try and rescue her and stop her from killing herself.

I don't know where it is, but years ago I found a really good development chart which shows what a child should be able to do month by month. It was really helpful to see just how behind she was so that I could fill in the form accurately.

Have read through now!

-find out about portage (google portage and your area) it is a home based, play based therapy/support which was fantastic for ds and was really helpful for helping find other support.

-a speech therapist should be able to help with building up eye contact, using sign/visuals as a form of communication (does he get SALT?)

• learning Makaton has been essential for us, you can start with 4 or 5 signs of what might be important to your child - more, milk, biscuit, again....

• does your D's go to nursery? There are SN nursery's, and if he attends a mainstream nursery/preschool he should get 2yr old funding, and hopefully a 1-1 who can help support your child and carry out speech therapy (under guidance of SALT) and any other help your child needs.

Rumple DLA claims aren't actioned locally they go to two or three claims handling centres (a bit foggy now as it's ages since I worked in benefits) so it wouldn't necessarily be seen by anyone in your local area. Could you be thinking of PIP which replaced DLA for adults?
I've never had any trouble claiming we're in the midlands and our claim was done in the North West. It's never taken more than a fortnight and the last one in January took just a week including postage there and back so they didn't ask any health professionals just accepted what dd's SENCo wrote before I filled it in.

Rumpled, don't be hard on yourself. You will need time to come to terms with this but expecting it to be a quick adjustment is unreal. I remember seeing a film with Tyne Daly, she had a child with special needs, think it was Down's but not really relevant. She explained it by saying (can't remember the places but this was the gist of it) "I was going to Paris, that was where I wanted to go and planned to go but I got off the plane and I was in Berlin. Nothing wrong with Berlin, its a nice place but I was expecting to be in Paris." I thought it was a good way to look at it because it takes the emotion out of it. He's your little boy and I am sure you love him to bits. In the end that's what matters.

I had to reply to your OP as I am a few years down the line from where you are now. I had years of infertility and losses so I had a long time to imagine what my perfect child would be like. As it was I got a DD who was deaf with a profound speech disorder.

Her diagnosis marked some very dark days for me. I needed to grieve for the 'perfect' child I imagined I would have. I felt judged by others who didn't understand her problems and just thought that I was a crap mum for not talking to her enough. I'm ashamed to say that one day I completely lost it with her. Screamed at her for all her problems and how she had ruined our lives I can't think about that now without crying. She was almost 2. But that was my turning point. I gradually began to accept the DD I had, got her lots of support (you have to be a complete pain and fight for everything you need).

Now I am so proud of all her achievements. I am proud to talk about her disabilities with people and how she is overcoming them. She is in mainstream school and loved by everyone. I love her with every bone in my body and wouldn't change anything about her now. I was lucky that she was born to me and she is lucky to have me as a mum. We were meant to be together. I have the skills, experience, love, time and money to give her what she needs, she has made me a better person.

Please hang on in there and get some support. Try not to feel guilty as we have all been there. It will get better

DS1 has ASD and I can strongly identify with the feelings a you realise he won't be like others. I've come to terms with it and DS1 is fab but it looks as if we may be starting the journey again with 4yo DS2 I have a meeting next week with his teacher. Be kind to yourself

There is a development fact file thing that Poltergoose links to on the special needs boards (lots of advice there Rumple) I will try and find it.

Honestly, the DLA form is doable, horrible, but doable!

Can you say what area you are in OP. If you're near me I'll come and fill in the DLA form for you!! And you will get it, trust me!

I'm really, really not trying to stick up for your tactless relatives but it's not unusual for people to be a bit thick and say the wrong thing. It doesn't necessarily mean they don't care. If you think your relatives fall into the well-meaning but thick category you might be best trying to slowly educate them. It can be difficult for relatives too especially if they are older have read too much Daily Mail and haven't had experience of DC with ASD.

YANBU, not at all. It's tough when you have a child with SN. I'm dealing with this issue at the moment as my youngest is not able to do things that his peers do.

I should have mentioned before that I'm in NI, I'm not sure if the process for DLA is any different though! Here it is impossibly hard to get a diagnosis and our country's horrible state of economy really doesn't help.

As it is I've found we also have citizen's advice over here to help with these kinds of forms so I will defiantly be calling them to get some advice as well as taking into account the advice you all have provided. I defiantly won't be doing the form alone though, DH will help as I feel being negative about DS will be hard but also slightly easy if that makes sense?

Pirate I know those feelings all too well! I've actually asked myself why? Why did this happen to us but then I tell myself that there really is no answer. I blamed myself, I was ridiculous and Listened to family who decided it was my fault that DS is the way he is. I'm still in my dark days but I'm trying to think of the future as I know now that's my problem.

Loqo, I know what you mean and all this has probably made me over sensitive. I think they are grieving too but some really are set in their beliefs that autism does not exist and DS is too young to have it. The worst has to be the switch between that and blaming me for it.

Just wanted to add my hand to hold.

YANBU in any way to mourn the child you thought you had. We have all done it. You will make peace with it and then you can start to really enjoy the child you have. It's not an easy path, but there are women on here who will go out of their way to help and support you when things get rough. I can't recommend them enough, and, in time, you will go on to offer a vital hand to hold to a woman in just the position you're in now.

Try not to give too much head space to people who are negative and remember to take time for you and your interests whenever you can.

My family found it hard to accept there was something 'wrong' with DD1 - I think it's seen as a form of betrayal to see her as anything other than perfect. One they realised that she was allowed to be perfect but have additional needs, it was easier. I found it helpful to use the phrase 'needs extra help' to soften the reaction from them. Now, they've completely accepted that she 'has SN' and has a 'squiffy brain' (official medical diagnosis, of course ). Tbh, squiffy brain is a whole lot more meaningful than 'widespread subtle cortical displaysia' (her official tag) will ever be.

Thank you so much OP for being brave enough to write down how you are feeling. Reading through all the replies has helped me enormously as I still have very low moments when I feel exactly the same way you do. My family can also be very hurtful about my two little boys with autism. It does get easier with time but I think I will always wish that my boys didn't have autism and there will always be low moments - but equally there will lots of times when you will burst with pride and happiness as you see your child achieve things you never imagined they would. Hearing my youngest tell me that he loved me without any prompting made me cry with happiness. Best wishes x.

I'll apologise before you see the links, because they may hurt to look at, but these are two links to development milestones.

For example, one days that by 2 and a half a child should be talking well and understandable most of the time. So actually, there is a huge difference between your DS and a typical child of his age

Birth to 5 developmental milestones

ICan stages of speech development

OP, I hope you are feeling a little better with the wise and comforting words of others. In many ways knowledge is power, and it will certainly help you enormously to research all you can and maybe connect with others in the same situation. Your child's future is partly determined by you being in partnership with health and educational professionals...and it's often best to learn as much as you can so you can make decisions together (and know when the professionals are talking crap)!

I have 4 children, 3 with ASD and other physical and learning difficulties. They are now all adult and I actually wanted to say that the one who has the more major disabilities is actually the happiest and more secure. Others may look on and feel sad that he will never be able to live independently or have a family or a job, but that it THEIR perseption not his. He is so happy and confident within his (limited) world, I sometimes wish I could join him there. I am not sure how to word this, and others may take offence (for which I apologise) but it's just a wonderful world he lives in, doing the things he loves and never wanting to enter the wider world we others live in. The son with far minor difficulties actually had a far tougher childhood and now adulthood, as he was expected to confirm into a world he never quite understood and yet was expected to live in "normally".

I understand your words about looking at others. I am now a foster carer and I see, and feel, the burdens the children I care for have to carry, and the complete horrors of their past. And I sometimes look at other children and feel sad...but that's really only fleeting as I have learnt you are who you are, and we, as parents/carers, can only do the very best we can and not hope for miracles.

Message me if I can help in any way. Having been through the minefield x 3 with my own children I may have learnt a tip or to to pass onto you (though most probably haven't). Good luck, OP. Thinking of you.

ps one of my sons never spoke until he was 7...and yes now I sometimes wish he would shut up!! Things happen when they are meant to and not according to some chart. Try not to stress TOO much about your lovely child in that regard.

My DS got diagnosed at 18 months and is now three years old.

When I realised he had autism, I had a complete nervous breakdown. I couldn't cope at all, was very severely depressed and had some very dark thoughts - including that I didn't want him anymore. Please don't feel guilty - your feelings are absolutely normal.

DS is now doing really well; he talks (although he does have a speech delay/disorder) is SO funny - all the children and teachers at his nursery love him - understands loads and is very affectionate and sweet and most of all is very happy.

The things that helped me were:

1. Anti-depressants - they got me through the very worst bit around diagnosis. I didn't take them for long but my goodness they helped.

1. Time - I read a study where parents of disabled children said it took them on average 2 to 2 and a half years to come to terms with their child's disability.

1. Reading "George and Sam" by Charlotte Moore - I have probably read it about 6 times in the last two years. It's written by a mother about her two autistic boys. Her children are quite severely autistic but she is so accepting of their condition and her life and so pragmatic and upbeat. Please do read it!

1. Reading "Daniel isn't Talking" by Marti Leimbach - a novel about a mother dealing with her child's diagnosis, written by an author whose child has autism. It really resonates with how I felt at the time.

1. Finding a local family who had a child of a similar age with autism and joining a local Fb group.