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 :-)

Much wise advice. I'm on the autism spectrum, somewhere in the middle. I'm also a mum, wife, and run a small business. I started off being very typically autistic. Most of us can and do have the ability to make something of our lives. The links to the Temple Grandin stuff are great - she can explain far better than I can what works and what doesn't for us.
Don't despair. Easily said, I know - I've been through diagnostic stuff over many years with our own ds and I know what sort of emotional toll it takes. But there's real hope.

Fab cardboard party idea

Wow I'm so lucky to have you lovely ladies giving me such great advice.

Specialmusic - love the cardboard box party idea, it's so true that kids love stuff like this. Who needs bouncey castles and fancy cup cakes - so over rated! I Will discuss with dh.

So today was another day but a better day. DS had his hearing test at the hospital. In the words of the consultant "your son can hear beautifully". I was secretly hoping he had a hearing prob as that would have explained re the language delay. But to be honest I wasn't shocked that this was the outcome hence it didn't dishearten me too much. I only have to whisper the word chocolate from one end of living room to the other and ds comes running straight over with a big grin on his face so knew his hearing was probably ok but I guess it was something we needed to get checked and rule out before seeing the paed in June.

Yes I felt that at the hearing test too, in fact DS failed his first one through lack of co-operation but I knew he could hear. I also remember getting a private speech therapist assessment right at the beginning when DS started to regress and her saying well he might just be a geek as he rattled through the alphabet and I just remember thinking please please let him be a geek. He carried on regressing though and got ASD dx fairly quickly thereafter.

It does get better day after day. Think if it like a grief process, you will have good and bad days and denial, anger, why me etc etc is all entirely normal.

Are you getting any portage? you don't need a diagnosis the SALT should be able to refer you. Also start looking at DLA forms (Cerebra guide is excellent and AFASIC) you don't need a diagnosis to get DLA - you could name the SALT on the page for the third party to support the application or ask your health visitor - which would help out financially. We got DLA (high rate care) before we got the diagnosis officially and are entirely reliant on it now to make ends meet.

Hi Speepyhorse, glad you had a better day. :)
Hope you and DH go for the cardboard box birthday party. If the weather is good it can be all outside if you have a garden (poster paint will be washed away by the rain (well, eventually :o ). Adults will need utility knives and there has to be a rule that kids have to ask adults to cut doors, windows etc. Other than that lots of poster paint, brushes (and a big waterproof sheet from B&Q in case it rains and all this has to be inside :) ) The "downside" is that you will have to put up with the end products for weeks afterwards as your boys won't allow them to be thrown out, so you may end up with a spaceship, a castle and a warship in your garden/house until late summer. :o

Hi Agnes what is portage and DLA?

DLA is disability living allowance. It comes in two parts, care component and a mobility component. It's virtually impossible to get the mobility bit under 5 but the care part is in 3 levels, low, middle and high. If you get at least middle rate care for someone you care for you can apply yourself for carer's allowance so long as you earn under about £95 per week.

It is a bugger of a depressing form to fill out, as you need to put all your child's needs down that are more than those of a 'normal' child. There is a good guide on the Cerebra website. Not fun but worth it.

Portage services seem to vary from LA to LA. In mine people trained in SN come to the house to help you to help your child. Ours only come if your child isn't yet at nursery, though, as the Early Years Advisory Service takes over at that stage.

Hi Sleepyhorse - your description of your DS sounds like my son a couple of years ago. I agree with the others that this is the worst time, it does get better! I found MN to be a real lifeline, especially when it came to getting the early intervention he needed, and sorting out the statement of special needs for nursery and then school. Take your time to absorb all the advice but don't be afraid to be optimistic. I think our children are lucky compared to the previous generation, because of early diagnosis and generally more understanding that not everybody is the same!

Thanks for explaining Ellen

Also meant to say aside from the other issues I mentioned in my OP I definitely think ds is ADHD. He is constantly moving, taking stuff out the fridge, emptying contents of a box, contents of my purse, jumping, running, bouncing off the sofa, climbing onto everything and even when he is sat still he is still moving a limb! What is weird though is he doesn't appear to be like this at nursery unless they are just not mentioning it. Sound familiar anyone? Think this is ADHD behaviour isn't it?

Oh and throwing things!!!!

Hi I just wanted to say that i understand how you're feeling because I'm probably only a little way on from that. DS1 (6) was diagnosed with HFA/Aspergers and possible ADHD just a couple of months ago, and DS2 (4) is on the waiting list to be diagnosed and I watch him in the playground spinning and flapping and in his own world and it doesn't take a genius to work out what they're going to say :( I've looked for the slightest sign that my DCs are just having a hard time, or a little shy, or going through a phase that they'll grow out of but I'm coming to realise that it's not going to happen. I know they've got lots of good points too, but at the moment I'm just working through all the stuff they won't be able to do. The good thing is that now my eldest has a diagnosis a whole bunch of other people are getting involved and I'm hoping that's going to help me him learn to cope a bit better, and I guess that my youngest will also benefit until he gets diagnosed properly.

Sleepyhorse, just wanted to say that your original post really resonated with me; my ds2 now has a dx of high functioning autism and adhd - originally all picked up from his great difficulty speaking and attendance at ICAN Speech and Language Unit Pre-School.

Even though I dreaded getting the dx, after a lot of crying and personal therapy, it has been very positive and has helped me "move on", it has also helped me deal with family members who prefer to think he is being naughty or manipulative - basically the ones in denial. The uncertainty was worse.

One of the nice things about this board is the support that's given but also the acknowledgement of our children's achievements when we post them, which as parents, we are very proud of, and perhaps don't want to share with people in rl.

ADHD is often DX with ASD. My DS is very active, but for him it's more the fact that he's under (hypo) sensitive to movement so he's always moving, jumping up and down, running about, jumping on the sofa etc. I couldn't tell you if your DS has ADHD as well, but you should mention all your concerns to the paed. Do apply for DLA, it may take a little of the financial worries from you, especially if you fill it in really accurately. Get help to fill it in, it's not an easy form, and you want to get the right level at the first attempt if possible. Ring up and ask for a form today, then any award will be backdated to today. ((((hugs in advance for filling in the form))))

ds1 has had 2 mini meltdowns since school ended at 3.15pm.....I was wondering if I could ask some advice? (the first was because he has lost his fleece jacket, the second because my dnephew got hurt when they were playing - not ds1s fault)

He has got his appt with the comm paed on 23rd - I think the GP/private therapists are thinking dyspraxia/dyslexia/aspergers/who bloody knows...

He will be 8 next month but emotionally seems much younger IYSWIM? He gets SO anxious/upset about the silliest things! I used to think it was my fault and it must have been something I did/didnt do when he was a baby/toddler but I hav a younger ds now (2.5) and I see that ds1 does not react "normally".

There have been lots of incidents over the years but 2 that really stick in my mind are;
Getting hysterical and refusing to use the public loo on a trip out (turned out a school bully had locked him in the nursery loo but no one saw fit to tell me about it! )
Getting hysterical again 2 years ago when we were on hols and his ball (a manky old thing I brought from home) got swept out to sea....it took me all afternoon to calm him down and he still talks about it now!

Should I be worried about this? I dont even know what to call it...emotional liability/immaturity????

I feel like crying today

I sometimes feel like I have 2 toddlers

To answer your question OP, my ds1 does not exhibit the behaviours (prancing, tip toe walking, hand flapping, ridgid movements etc) at school, just at home

Becarooo, not sure what you are asking. The anxiety and meltdowns over what seem to be insignificant things is very common with ASD. Amberlight has some good insights. The ball for instance, your DS might place much more importance on inanimate objects than a NT child, he might have felt like a pet had died, for instance. It's hard finding out the reasons for meltdowns, you have to try to put yourself in their shoes and see the world through their eyes.

I've heard other posters say than counselling may not work for DC with ASD but I don't know myself. I think you need to start your own thread to get some better advice.

Thanks Ellen x

So how come they don't exhibit their quirky behaviour at nursery/school? Surely at this age they are not aware that what are doing is seen by others as a bit odd? This is what I don't get!

Don't know, sleepyhorse. But I think they can try really hard to conform in school, or can find it all very stressful, so when they are feeling secure and safe at home they let it all hang out!

Ok for school I understand that but not at pre school age?

I think at preschool age it might be more the second theory. They are a bit bemused by it all and uncomfortable and insecure so try to be invisible and are still holding a lot in. Basically they are out of their comfort zone so don't act naturally, then feel secure again at home. It's not that they are aware that their behaviour is different, it's just automatic. (But what do I know?)

Hi sleepyhorse,
Sorry this is such a tough time The others have given some great advice- I'm in no position to, as we're at the early stages of assessment too, but I empathise so much with the misery of not knowing, and lurching between "he's fine" and "there's something wrong"... So I'll add another virtual (())

the painting boxes party sounds ace- I guess it only needs to be a couple of other children at home to make it feel like a party for your dses.

And to add to what ellen said, I think most of my ds's quirks manifest at home rather than at school (he's reception age). He doesn't do much physical stimming, but there's often a constant stream of humming/ nonsense words/ baby talk (usually in response to his baby brother, but still...) I don't see that when I spy on him in the classroom (luckily his school has a very open-door policy for parents which suits my nosiness), but I get the impression that he expends so much energy keeping it in check in school that it all comes out at home.

sleepy - I am sure people have already said this far better than me, but this is the worst bit - not knowing. Please don't think you've lost your little boy, though. Diagnosis is a label which can be useful to get the help your child may need. Your little boy is still the same, wonderful, lovely child that you had before these worries and nothing is for certain yet. This thought got me through the dark days your going through now. 2 years ago, when my DS was dx, I thought it was the end of the world. It was a huge shock, and you have to allow yourself time to grieve and adjust to the new world and the different path your child may go down if he does have asd. But in all honesty, after months of worrying is he, isn't he, facing some days in sheer panic as it was clear he was, then having false hope on other days when it seemed he wasn't, for me, after the initial shock, the diagnosis was a relief as I knew I wasn't a bad parent, or imagining life was tougher for us.

People on the SN board are fab. They will hold your hand, and get you through the dark days, as well as celebrating achievements. Believe me, you will find the strength to cope. All the best - I hope things work out for you and in the meantime keep posting on here for support. x

Becaroo, EllenJane is right - what seems like emotional immaturity with us can be because of the way our brains develop. This info is from a brain scientist who specialises in looking at autistic brains - he told us that most people have a specialised superfast "people bit" in the brain. Its job is to assemble all the info about a person and how we feel about them - the love, the caring, etc.

In ours, the brain uses that bit as a data storage area for our hobbies and things. It means we can recall facts at breathtaking speed and be amazingly insightful about our interests.....but....we are as attached to our things as you are to your new born baby. If our ball goes out to sea, that's one of our babies drowining and never to be seen again. The grief is indescribable when one of our most precious things is damaged or lost. It can't be helped - we're having to use the incorrect bit of the brain to do the thinking on it. It's also why we panic if something is damaged or missing at school etc.

We learn to care about people by re-wiring our brain to use other, slower bits of the brain to do the same job. It's why it takes us longer to think about emotions and learn how to display them, and that's why we can see emotionally immature...the time delay whilst our brains wander about looking for info on "who is this...what are my feelings for them...what mood are they in?....how do I respond to that" is so frustrating for us too. It's because we really do care about people but can't express it well enough until we've learned how to rewire enough of our brain to say and do the right thing.