How did you cope when you found out your child had a disability?

[Hedger]

My DS is 18 months old and over the last few months I have become 99% sure that he has ASD. We are currently seeing various doctors to get a diagnosis - whilst the paediatricians we have seen say it's too soon to say for sure, they do admit that he has many red flags.

I haven't coped at all well with it unfortunately - I had a nervous breakdown a few months ago and had to be signed off work for a month and put on anti-depressants. I felt better for a while, came off the anti-depressants (shouldn't have really but really hoped I was OK) but unfortunately the depression and anxiety about it all is back.

I just don't know how to cope with it - I love him so much and I just can't bear to think of him struggling for the rest of his life and being lonely.

I just wanted to ask how you coped emotionally when you found out that your child had autism (or any other disability)? I've found a couple of friends and family members (on my DH's side) have been really unsympathetic about the fact I haven't been coping well and seem to think it is just some kind of indulgence on my part, so I am trying not to show I am struggling again but it's very hard to keep a brave face.

If any of you found anything helped you to cope or have any words of wisdom, it would be really great to hear from you.

Hedger

Can I just ask how severe it is? My 6yo was diagnosed with ASD it isn't that severe but every day is very challenging for me but it is something you get used to.

When I found out, I carried on as normal I didn't let it get me I kept smiling. I wouldn't change my son for the world :)

Keep strong you are entitled to a lot if support.

I cried everyday for at least six months. I'd be on my way to work in rain letting the tears fall.

I love my son so much but was haunted by fear of the future. I have a sibling with learning disabilities. It has been a constant battle for my parents to get her first an education and now decent supported living so my fears were not groundless.

We found out earlier this year that ds2 (9) has AS, although formal assessment etc is a while off yet.

I tend to do as much research as I can, to try to help him, and try to manage the meltdowns.
Sometimes I get really down about it and feel a huge weight of responsibility, sometimes it's easier and he's just my little boy.

It's not been easy with friends and family, because they'll often say that he's just being a boy, he'll grow out of it, he needs to run, and I know they're trying to help, and make me feel better about things, but all it has done is made me question myself and feel that they think I'm making things up. Don't get me wrong, they have been lovely, but I get the impression that they think deep down ds is being deliberately naughty.

What's helped is finding people who understand. There are a couple of mothers at school who have dc with ASD, they have been lovely to talk to, non judgemental, given suggestions that have really helped to manage things.
The goose and carrot thread here is full of people going through similar things.
If you have any worries, posting on here is helpful, there're always posters who can advise.
NAS has local meet ups if think, if you google the website. I haven't managed to get to one yet, as ds always manages to have a massive meltdown when I'm quietly planning to go
Find someone you can offload to - I think that's important for your sanity! Posting here has definitely helped me loads in the last few months.

Sorry, that was very long!

Thanks for your reply, Drawings.

It's hard to say how severe it is because he is so young - I guess we won't know for a couple of years yet. At the moment, the signs are no pointing, no shared interest, no comprehension, no talking, bad eye contact, very independent, etc. But he doesn't seem to have any repetitive behaviours, sensory or physical issues, which is good.

It sounds like you coped a lot better than I am! I am not worried about life being more difficult for me - he is a very good sleeper and eater and doesn't have tantrums or anything. In fact, his independence makes him quite an easy baby - he's very happy to just potter around on his own. I just worry for him as I can't bear the thought of him being sad or lonely or struggling with things.

Hedger

He won't be sad or lonely, yes he might struggle with certain things but you'll always be there to help.

Obstacles - Yes, that is exactly how I feel too! Just a deep and overwhelming sadness. Can I ask how long ago it was that you found out and if you find it much easier to cope now?

Fav - Yes, I have had that too from people; that's he's just a bit slow and will catch up eventually. I think they are trying to be nice - or perhaps don't want to accept there is something wrong - but it doesn't really help because we are their mothers and know when something is wrong and what we really want is to be supported and not have our concerns dismissed! MiL also tried to suggest he was behind because I wasn't giving him home-cooked food and wasn't engaging with him enough, which was quite upsetting .

I think I will try the local NAS group, thanks. Posting on here definitely helps too.

Thanks so much for taking the time to reply - I really appreciate it!

DS1 - I was ready for it. Already aware, early in pregnancy that there was a lot of it in my family and a boy would be at high risk. He was such a difficult baby and toddler that the diagnosis was a relief.

That said, DS2 was already here by the time DS1 was diagnosed. He was such an easy baby that I was hoping we'd got lucky and swore I'd be devastated if we hadn't. By the time he'd missed milestone after milestone, I was resigned - he was referred when he was 21 months, though I'd expressed serious concerns at 16 months.

Doesn't mean that it didn't get me down later on. I found the approach o his 5th birthday incredibly difficult, as it felt like a lid was being put on things like his speech, which was still virtually non-existent.

He may not be sad or lonely. Ds1vwas dx at 4 and has always been a happy boy(12 now) and the concept of loneliness hasn't hit him yet although he is anxious about other stuff.
I was sad for the future I had imagined that now wouldn't happen and feared for his future. I think what helped is I had his twin siblings that are 2 years younger to distract me and keep me busy. One day I had a light bulb moment and thought it's fine if he can't look after himself because he can stay with me and when I am not around hopefully his brother or sister will have him. I also redid my will at the solictors to make sure he always has a home so that helped too.
he has you and your dh and that means he is luckier than some nt kids

Ds has always been different but we were told at 3.5 that he had a significant delay.

Ds has since been diagnosed with ads and epilepsy as well as few other medical issues. He is my gorgeous 8 year old but the constant roller coaster of new diagnosis has made it hard to adjust and I'm afraid to say I still have days when I'm down about it. But I'm mostly more on an even keel.

I try to stay focused on the here and now and make sure we give our kids as happy and full a childhood as I can.

Sounds like you are well on the case. Have you looked into portage for your ds? Not only good ideas for helping your son but also support for you. You can call up the local authority and self- refer

Asd nots ads!

ouryve - Yes, I can understand that the 5th birthday would be hard. It seems the tricky thing about ASD is that it is such a broad spectrum and there is no way of knowing how much or how little progress your child might make. It makes it hard to come to any acceptance of the situation as you are constantly hoping that they might improve, which means you are always at risk of disappointment.

Obstacles - Yes, I did call Portage. Unfortunately they do not operate where I live now but we are moving to Wandsworth in Autumn and I know they have a team there, so will call them again then. Thanks.

Defineme - Yes my DH is wonderful and absolutely dotes on DS and we will both do our utmost to give him the best support we can. That's a great idea to change your will so you know your son will always have a home, that's lovely. And great that you have two other children who you know will be there in the future for him.

I suppose ultimately people cope because they have to, for their child's sake, and I guess that is what will keep me going.

I found it hard. Initially spent a very anxious period looking up things on google - we had the GDD label from 12months on. Times of feeling v low and isolated, ADs helped I found it difficult being around friends I had with same age children - still do sometimes. The official diagnosis came recently (when she turned four) and that has made me scared about the future and how we'll cope. She has asd and is on the severe end. But she is lovely and keeping that in the front of my mind helps me.

Early on one of the most difficult things is that there wasnt much other people can see. She's healthy and gorgeous and I think people not immediately involved cant really see what the issue is, it doesnt tally with their idea of a serious disability maybe. Being so out of kilter with family and friends was really destabilising - I often wondered whether its just me being over dramatic/neurotic. It wasnt its just that I didnt have the luxury of lying to myself or the excuse of 'blame the parents'. We get that less now - the scale of abuse/neglect it would take to make our dd this delayed would be unhideable - I imagine with less severely affected children that suspicion drags on longer than it has for us.

You do just keep going somehow, theres phases and ups and downs. You will also find ways of dealing with the people that upset you. Not that it gets easy, just not as hard as at the beginning when it feels like freefall. Big hug to you, this bit is just hard. Dont feel bad about feeling down, see if you can get some support. Take ADs if they help you, unsympathetic people dont need to know if you dont want them to. Consider counselling, charities sometimes fund 6-12 sessions. Join a support group or SN playgroup and meet other parents in the same situation, use these boards. Enjoy your wee boy.

Initially, when it dawned on me that Dd was different and missing milestones, I just felt sad and overwhelmed. I think I cried for months every night. It was very much like grieving. but eventually I came out of it. She is 6, has a dx if asd and lots of issues and life is different to what I thought it would be BUT we are fine now. We are happy and life is good.

What you are going through is very normal and the limbo between noting differences and waiting for a dx was by far the worse time for me. I really feel for you.

But it will get better... hang in there.

zzzzz, I feel that too - that we may well end up living with DS2 for the rest of our lives, but is that so terrible? He is lovely, mostly sweet, affectionate, cuddly and funny. And I live in hope that my 3 year old non-verbal boy will one day understand how important it is to communicate things to other people.

But in my bleaker moments of course I worry. How will he cope if one or both of us die younger than expected? Who will care for him when we do die? DS1? (DS1 is not diagnosable but I'm starting to suspect he has quite a few autistic traits himself.) And however lovely he is, we deserve a retirement, dammit. Knowing that we're unlikely to be able to enjoy that as other people expect to, often makes me feel quite bitter.

We've only lived with the diagnosis a year (we had suspicions for a while longer but it's easier to ignore those). I know it'll get easier to accept as time goes on, even as time brings new challenges and DS2 may become harder to manage.

I think I could benefit from counselling or even ADs, tbh. It hadn't really occurred to me that I need help too!

I fell apart :(
DS2 was born floppy, and within a few months I knew something was wrong. He was my 4th child, and insead of taking it in my stride, I fell apart completely... wanted him taken away, convinced I couldn't be the mum he needed. It took til he was one to love him, and by then we knew for sure he was different.

BUT it got better... slowly and surely. He didn't smile til he was one, and then rarely at people, ..he was dx with hypotonia, developmental delays, then later learning difficulties , speech diffiiculties, autism. He went to special school....

he's 17 on sunday and is the hub, the centre pin of our family. He talks (non stop about his obsessions ) he walks..needs splints but gets along ok, and he is HAPPY. He's different, sure,but he has friends (with SN) he is developing some independence, and it's ok.

I have moments of sadness still.. worries about his future as it's unlikely he will havea job but he's too aware to sit around all day. The first grown up milestones he is unlikely to have.. driving, a job, sex. But the raw pain has long since passed and he has brought us SOOO much happiness it has been worth every second.
Hang in there, it WILL be ok...

Lovely posts on this thread. And medusa great to hear from parents with older kids. I can't imagine ds being 17 and towering over me. Hope the meltdowns have stopped by then!

I find the unsympathetic family (my mum mainly! as she doesn't want to accept DS has ASD) quite upsetting. I have enough going on without having to deal with her unhelpful attitude.

Recently my GP (who is always in a bad mood and grumpy) was very unsympathetic about difficulties we have been having and was actually very rude. I was very upset about what she said. So am now looking for a new GP!

I can cope with the ASD diagnosis, its the stress of constantly having to fight for help which is absolutely draining. I get very worried about it all and there are tears and anger that my poor boy is going through this.

I have recently joined a local group of ASD mums and just talking to them feels so non-judgemental and they know EXACTLY what I am talking about.

But my little boy is still my little boy and I love him so much. I remember all the sweet and funny things he does and it always makes me smile.

I often go and read this old mumsnet thread too which always cheers me up:

www.mumsnet.com/Talk/special_needs/1669092-Tell-me-something-positive-and-wonderful-about-your-autistic-child?pg=2

Ds is 9 with severe autism,however he was an easy baby/toddler.
We started the dx process at 3 (we could have started at 2 but I was in complete denial).
When asd was first mentioned by professionals I spent the next month crying till I could cry no more(only when I was alone,I wanted to appear bulletproof to everyone).
I found the waiting for the dx the worst part.
Once he got the dx I then. Spent months reading everything on asd I could so I could help my boy.
It took a while to see him as just the same little lad that he had always been.
Fast forward and yes he struggles,lags behind others and at 9 can't write,but he is the happiest little fella to be around ( he's not only my son he's my best mate)
My fear has now been replaced with pride at how my little man progresses and achieves things in his own
Little way

I think it's inevitable that you grieve for the future you thought your child would have. I spent a long time crying, many many sleepless nights googling outcomes (not good) and feeling utterly miserable about it. And I'll be honest, sometimes feeling a bit ashamed at his peculiar behaviour.

But now I couldn't be more proud. He's a really fantastic kid and I so appreciate his perspective on life. I wouldn't go so far as to say his disability is a blessing but it's enriched our family's life in unexpected ways

Don't look too far into the future, just take it a day at a time and celebrate the achievements because there will be plenty of them too.

Get support from people who understand. Some family members and friends are great but others toxic. Just cut the toxic ones out or minimise contact, they just drag you down.

Find a network who can support you. RL and places like this. We all eventually come to some kind of peace despite some bad days and you will too, but you need help to get there. Lean on others when you need to.

Take every thing offered. All different therapies, anything that helps (you'll soon learn to see what is useful and what not)

Apply for benefits like DLA they are not hand outs but help to care for your child. They take some financial pressure off.

It hurts so much because you love your child so much. This love will keep you strong, even though you find that hard to believe now. Parents and carers of disabled children aren't saints you admire and wonder 'how do they manage', they are people like you and me, just ordinary people who find strength from their love.

See if you can find on the internet "A trip to Holland" by Emily Pearl - by one mother on how she felt about having a child with ASD, verbal dyspraxia, ADHD, etc. (Its quite a well known piece in the world of SEN)

I remember on the day we were told that our dd had language problems and would probably need a statement, both of us sitting in tears in Burger King with other children - I could not face cooking that day.

All I wanted to do for weeks was to lie on the floor and cry - however, I couldn't with 3 children, so I waited until they were in bed to cry. You realise that your fairy tale dream of them going to mainstream, university, getting a job and married is not going to be as straightforward as you always thought. At first, every time you look at them, you see the label and not the person, but it gets easier until eventually it is just becomes a small part of them and you see their personality. You can forget about most of the time, until you come up against it at annual reviews, DLA forms, etc.

Having said that, other diagnoses may follow - the co-morbid conditions, such as dyspraxia (aged 4), memory problems and dyslexia (aged 6), the profound language disorder (aged 10), epilepsy....Each time, I felt exactly the same as the first time. That is not to say that your child will have the same conditions - I hope you are lucky and there is nothing else, but you will meet other parents of SEN children and it may give you an insight when their child is diagnosed with more; that its not a case of water off a duck's back 2nd or 3rd time around)

My parents consistently told us all these professionals talk mumbo jumbo and she would be alright as an adult - we'd see. Many of my friends have disabled children, and very few of them, that I can recall, found their parents to be much help at all! Speak to one of the helplines and join a support group. You will always meet parents, who are worse off than yourself!