My whole world is falling apart

[sleepyhorse]

Hi there

Gosh don't know where to start....please bare with me
DS1 is going to be 3 next week and has language delay (says about 20 single words and his speech is very poor - only we can understand what he is saying!)

So he has been seeing SALT since March and has had about 4 sessions so far. The therapist hasn't mentioned the word Autism to us as presumably she's not in a position to make that judgement, however she made her concerns for him very clear by session 2 - saying that his eye contact is reduced, has short attention span etc etc and as a result she has referred him to a paedetrician. We now have an appointment for him in June which Im dreading as unfortunately Im not dealing with all this very well. Im really trying to be strong and positive but I keep bursting into tears and just feel like Im in such a dark place. Keep hoping Im going to wake up from a bad dream!

It's clear he has issues but DH seems to be in denial....keeps saying he is fine, that he just has a language delay and that it will all be ok. Whenever I point out to him that he is spinning again...he tells me that all kids spin and thats part of being a child. Then I point out that is banging his head on us...he tells me he is just doing it for attention. He does admit however, that the constant tantrums are a worry. Also he walks on his tip toes and ocasionally hand flaps...but again DH said its normal as he is excited. I would like nothing more than for DH to be right, I really would but right now when I see that DS is ticking all the boxes for ASD I can't see that Im going to be wrong here. I know it doesn't help that i am constantly going on the internet, I am literally driving myself crazy!

Then I will have days where I do think I'm imagining it. Family members will call me up and convince me that he so isn't ASD because when we were on holiday he would throw things in the pool and look straight at us to see our reaction, that he is affectionate, happy, understands and follows instructions etc etc. Then they remind me also that he can't be that bad if nursery aren't concerned about him (he only attends 2 morning a week though so don't see that much of him). So then I will feel all positive again and that its all in my head.

And now to top things up we are having major money worries, struggling to pay mortgage etc etc but thats another story! But now because of the money stress in addition to everything else, things in this house are really bad right now and DH and I are constantly arguing. And tonight was the last straw when we decided we are going to have to cancel DS1 and DS2 joint birthday party next week as just can't afford. Feel so guilty that we are having to do this to our gorgeous little boys.

Sorry I know there are people on here with much worse problems so excuse me if I sound dramatic but I just needed to let it all out as just don't feel like I can cope anymore. Just feel like running away right now. How is one supposed to cope with the not knowing? And if he is diagnosed with this, will I find strength from somewhere to cope?

Thanks for listening :-)

You don't know this yet, but this is the worst it gets. When you have a void of uncertainty you pour all your worst fears into it.

Does your DH read? If so, could you get him a book or two on ASD just to explore the possibility.

A diagnosis doesn't change your child. It tells people that they will need a map for some things.

A lot of men struggle, as if something being 'wrong' with their child is a slate on their virility. Other family members have the luxury of time and denial.

Really, as parents you don't. You need to find out what he needs help with asap and start giving the help regardless of diagnosis. But you need to go at a steady pace, one step at a time, not a panicked whirl of frenzy.

If there is ANY suggestion of ASD by the paed, ask for something in writing (working diagnosis perhaps) as this might support a claim for disability living allowance which might help you out a bit.

hth

Your not being dramatic at all, going through any diagnosis is tough, no one wants anything to be wrong with their child so be easy on yourself

Dd1 was diagnosed with Aspergers at the age of 4 and then dd2 was diagnossed with ASD and severe language delay at the age of 3, we found it tough hearing them tell us there was something wrong with our girls .

Your Ds is still very young, he sounds like a bright little thing, he will change so much in the next year or so, its so hard to tell what the future will hold but he's lucky to have such a great mummy by his side. Your dh may take a while to except there is a problem, my dh is still getting there (they take longer than us, i think its just a man thing) and i think family always find it hard to accept.

:( I know what you feel like. It's a hard time to go through. hugs it took DSs dad a long long time to want to admit DS had problems... But now he is more clued up then me.

thanks Star and Marne - think you are right re the man thing. Also I think that regarding family and friend's advice, until you read up about ASD a lot of people think that autistic children aren't affectionate and don't understand what you are saying etc etc (including myself as this is all new to me).

Marne - must have been very tough having both your girls diagnosed on the spectrum. So if one child has it does this mean there is a strong chance younger sibling will have it?

You know when you have your first appointment with the paed - do they give you any indication of what they think the problem is? Or do you have to wait another 6 months?

I'm going through something similar at the moment and its so difficult as you find yourself looking at everything that they do and marking it as something that fits with ASD or not. What I am learning quickly is that they may not display everything at the same time so not only is it hard work but its futile as well.

You're not being dramatic at all. Its bloody hard and many tears are shed. No one wants to be told there is something wrong with their child, but they will still be them, no matter what.

If its any consolation my DH was the same right up until we had the meeting with the EP (my ds is school age) where he really came through and not only backed me up, but contributed a lot. When it came down to it, your DH will be stuggling with the same emotions as you, but handling it differently and I am sure he will come through when needed.

Starlight's first bit of advice really resonated with me. This initial time of uncertainty is awful. You keep seeing the worst then convincing yourself it's all going to be fine, then they tick some diagnostic boxes, but then they definitely don't tick some others. I used to cry in bed, DS will be fine, won't he? It took more than a year from my first suspicions that something was wrong to getting to see a paed, loads of delays and waiting lists, then 6 more months before getting a DX. By that time it really wasn't a surprise. Now is the worst time.

But it does get better. You start getting stronger, you have someone really important to fight for. See if there are any RL support groups locally. It can help to get some proper empathy rather than pitying sympathy. If you get a DX try to get on an earlybird course, good for getting a support network in place more than anything else. Other parents are the best resource. They can also recommend experts / methods that really can help.

I wish I'd had Mumsnet back then. I only had dial-up Internet access! Keep posting and lurking. ((((hugs))))

What she said

I completely agree with Starlight, the worst time for me was when I knew something was wrong but couldn't face seeing anyone about it. It was a time of fear, grief, sadness and even mourning because deep down I knew that our DD had ASD or something similar and was not going to have the life I had imagined for her - silly really but it felt like I was mourning.

Getting information, getting a diagnosis for whatever your son may have will give you the strength and power to deal with whatever it is he has and you will be able to help him in a much better way. You will grow strong - most of us turn into mama bear's :) Mumsnet has helped me so much, stick around and ask lots of questions but please don't spend too much time living and worrying in the uncertainty, each day from now on will matter very much and there is much you can do at home just 1:1 with your child.

Sending you a big hug and pixie dust xx

What do people mean when they say autistic children look at the world differently? How do they see the world? I think this is what upsets me as I want DS to know whats going on, how much we love him, how great life can be etc etc

Cross-posted with you, babyheave! You really know how it is now. For me it was 8 years ago, so time has probably softened it. But I can remember it was desperate. It's not desperate anymore, it's normal, and I can be proud of him for where he is now, how far he's come.

Eloise - thats exactly how I feel....that Im mourning for him!! I have never said it before but Im constantly feeling like that. At times I do feel like I have lost my little boy and never in a million years did i think this was going to happen. I was so ignorant and didn't even know that traits of autism start to surface when they reach toddler age - for some reason I thought you would know as soon as your child was born if there was a problem.

If you go on Youtube and search for 'Temple Grandin Ted talk' you will get a 20 minute presentation where she describes what its like to be autistic and describes what its been like for her and how she sees the world. But I think every child with ASD is different.

I've read heaps of books and the three books I love the most and have helped us the most are:

Overcoming Autism by Lynn Koegel

10 Things Every Child with Autism wishes you knew by Ellen Notbohm

Emergence: Labelled Autistic by Temple Grandin

It's not ignorance, I think most of us have gone through exactly what you're going through, don't worry that you're feeling something you shouldn't be, its all normal. And I promise you it does get better, much better :) Feel free to PM me if you want to chat, rant, ask questions etc xx

Sleepyhorse, for my DS I've come to realise that what makes him happy isn't what I think ought to make him happy. He doesn't play with friends like other children, he doesn't have playdates but he is happy playing on the computer or Wii or running around the edge of the playground. Other children do like him, but he's not too bothered. If I ask him what he wants to do in the holidays he'll say, "Stay at home, please."

Now, we have 3 boys so he has to go to the park or the pictures or to the beach or for a walk. So he still does all the 'normal' things. I think it's important because otherwise he'd stay indoors all the time and not get any interactions except for at school. He goes to scouts, but doesn't enjoy it that much, not as good as playing on the PC! But he gets time to do what he likes to do and he is happy more than he is stroppy and upset. What more can you ask?

He sort of knows I love him. The important thing is that I do love him! He is lovely. He won't say he loves me. He says he doesn't, but with such a big smile on his face when he says it! Yes he is different, but I can now celebrate that difference. It took lots of time and work to get here, and we still have a long way to go but it is so worth it. Every achievement is so important. You get more joy from achievements with DC with SN than you do with NT children. Hang on in there.

Reading your post has rewound me to the dark place I was in about 2 years ago. I spent most of the day and night either crying or frantically scouring the internet looking for things to confirm or dismiss my worst fears. I cant explain it but it was something I just needed to do. 2 years on and both DS (age 5.11) and I are different people so to speak. He turned out to have SPLD (language problems that also put him somewhere on the spectrum) but boy has he changed. He has grown in maturity and his understanding and speech have blossomed. He has blown me away with how he has coped at school and the hopes I had 2 years ago seemed completely unattainable. Not only has he met them but exceeded them.

Starlight is soooo right. You are at the worst place right now but I promise it does get better, with time. Keep posting, it was a lifeline for me. My DH isn't in denial anymore but he doesn't talk about it much. Its kind of an unspoken thing, hard to explain. But the bottom line is he respects DS's limitations but pushes him every step of the way whereas I tend to back off. Its paid dividends big time and I can see that DH is not going to give up until DS learns to share his love for the local football team .

Anyway, I am ranting away! Just wanted to give you some hope and positive thoughts whilst you are in limbo. Hang in there

Thanks to all for your words of comfort :)

Eloise - I just watched the Youtube for 'Temple Grandin Ted talk' - found it very interesting and must say it has made me look at autism a bit differently.

Better go to bed I guess as up early tomorrow - DS1 back at nursery. Can't say Im looking forward to seeing all those competetive mums again with their perfectly speaking kids...he he

What I wanted to really say was that you do come to accept your child's disability and it is okay, but I also know that that is the last thing you want to hear, because quite frankly where you are now it is most definately NOT okay, nor do you ever want it to be. You just want the difficulties removed immediately and to get back to the life you feel you are entitled to.

It was only two years ago for me too so I remember clear as anything how desperate I was for the support of people on here but secretly didn't want to be one of them. I was sure they didn't deserve a child with additional needs but I CERTAINLY didn't deserve it, or to be precise, my DS didn't deserve it.

But, whilst I worry like hell for him it doesn't sting like it used to. We've all settled down in our family roles and I've become informed and knowledgable and less frightened for the future. Some of this has come from learning that all those people out there that are paid to help you can't do even half of what you can do yourself for your child, and while this is a burden and responsibility it is also liberating and positive.

Sleepyhorse - I empathise completely with you I have been there too. As everyone says it does get better you are at the most difficult stage at the moment.

Big hugs, stay strong. :)

Hi, Ive just joined and my son was diagnosed with asd, adhd, behavioural problems, learning difficulties etc and now I am fighting for him to be moved to another school. I wish he had been diagnosed with all this when he was younger but I was told by 2 paediatricians that it was all me and he was just a little late in developing. Grab anything you can whilst your child is young as its harder when they get older to get help or any form of diagnosis.

Hi, I just wanted to stop and give you a virtual hug. We are in the same stage as you at the minute. Although the paediatrician has mentioned ASD to us. I know I have been doing the same as you. I've been treating the Internet like some kind of crystal ball that will tell me definitively that DD has ASD or not or something else or nothing else. Unfortunately, one website will make me think that she definitely has it, one will make me not sure. It's so hard wondering whether or not something they do is an ASD trait or not. I know I over analyse everything.

Don't feel bad about mourning. It's natural. I've always DD wasn't like other kids. I remember crying all night after I took her to her 5th dance class. I thought she would get used to it but she didn't. She just ran around trying to get out the room and then she ran around the building. The teacher was so patient with her but she was disrupting the other children and we left in the middle of the class. I knew then she was really nit the same not just a little different. We didn't hear the phrase ASD until 6 months later, a month ago.

You will get through this and so will your little one. I have to remind myself that everyday!!

You poor love

I know EXACTLY what you mean. you know there is something wrong but no-one will listen/dismisses your concerns....sigh...its very hard.

My dh is also like yours, although as ds1 is nearly 8 (and only just getting the help he needs!) we have been dealing with issues for a lot longer. Dh is finally coming to accept that ds1 has "issues" that need professional help...ds1 is undergoing private therapy atm and has his first appt with the comm paed on 23rd. He is at a new school now and much happier but at some points over the past 2 years I have - literally - not known where to turn. Its a very, very lonely place to be

Dont know what I would have done without the MN SN boards and posters!

star is right...this is the worst bit. Sorry about the party

......I know this sounds blunt but the only way I can explain it is to tell you that I grieved for the parent I thought I would be and the child I thought I would have....

Would I change ds1? NEVER. But.......

Would I like to be able to go out at night (can't as ds1 becomes too anxious/hysterical)
Would I like to be able to take him to the cinema?
Would I like him to be able to read?
Would I like him to be less anxious about everything?
Would I like him to stop tip toe walking?

...Yes.

Its not how I imagined it would be. Once you have grieved for that "perfect" mother and child relationship you will be able to move on and develop the perfect relationship for you and your ds

xx

Hi Sleepyhorse. So sorry to hear you are going through this. :( Bt also great to see you have done something for yourself, too: you posted here for support. Remember that your Ds - actually, both DSs need a mum to be there for them so you need to take care of yourself, and asking for emotional support is a big part of it. :)

Other mums have given you such good advice that I can't think of anything to add, maybe other than do push for things (diagnosis, assessment, statement, etc.), because if you don't do it, no one else will. The sooner you get a dx the sooner you can get help.

Also sorry for the party - can you still not have a "low-key" one? You know, bake some cakes at home from Tesco ingredients, etc. I think having a party with friends is more important for kids than the actual "contents", if you see what I mean. A single mum friend of mine (at the time on the dole) once organised a party for her kids where the main theme was playing with huge cardboard boxes she had collected from Comet and lots of poster paint from ASDA. Cake was rich tea biscuits from Netto soaked in cocoa. All kids said it was the best party ever and other mums had to drag protesting kids home as they did not want to stop. Any chance of doing something similar for your boys? :)

specialmusic - I love your cardbox birthday party idea. will make a mental note of it :o

sleepyhorse, was thinking the same as specialmusic re birthday party. can you do something low-key at home? for DD's 3rd birthday I invited her friends (well, my friends' DC) around. I baked a nice cake and some muffins. kids were playing together and we all had a really good time.