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Autistic ds - I'm so desperate...

(65 Posts)
helplessandworried Fri 15-May-15 05:31:45

Posting for traffic after a horrible sleepless night...

DS is 19 months old and has been more or less diagnosed as autistic. The red flags have been there all along, but I happily ignored them until it was no longer possible: just fleeting eye contact, no words, no imaginative play, no interest in other children, no imitation whatsoever.
I'm extremely scared of the future, of the life he might lead and the impact it might have on dd and my husband who is already struggling with depression. There are so many questions noone can answer: Will ds ever learn to talk? Will he ever have friends, use the toilet, hug us, have a job? Will he have any feelings for us at all? Will we be able to cope? Will he have violent outbursts and hurt his sister? Will he decline and stop smiling at us which he does sometimes? Will he be happy? Will we ever be happy again? I'm so sad.

Please tell me everything will work out somehow... Please....

lunalelle Fri 15-May-15 05:49:05

Hi, OP.

You'll hopefully be glad to know that I am Autistic, as is my 18 yo DD. I learned to speak when I was about six. You wouldn't know that, now. DD speaks fine and always has.

We have friends.

I have two degrees. I have a job smile

Life isn't perfect and there have been difficult times. Like anyone...

I have plenty of feelings for a variety of people and on a variety of subjects.

We (Autistic people) receive a fair bit of assumption and bad press. We are all different. Autism does not define us...perhaps we define it ;)

My advice would be to continue like any other child and not make some massive deal of it. Be aware and sensitive to issues that crop up, deal with them as they come up, but don't base his life around him being autistic.

It's intrinsic to who we are, but it is not all of who we are smile

LittleBearPad Fri 15-May-15 05:51:14

I'm sorry I don't know the answers but didn't want to read and run. The special needs topic may be a good place to post in. There will be lots of experience, hand-holding and advise there.

LondonZoo Fri 15-May-15 05:52:03

Everything will work out smile

I guess your life has taken a different turn now, and it is time for your inner Lioness to leap forwards.

The Special Needs board here will be your friend and have your back.

Is there a support plan for your son if not then find out what is available and get te help he needs.

Separately, your husband has to take responsibility for his depression- he has to be the one leading the way both for his medication and any talking therapy.

helplessandworried Fri 15-May-15 06:14:52

That's giving me a ray of hope, lunalelle . I've just come across some really horrible descriptions of life for autistic people so far and I'm so very worried that he might be one of the most severe cases, being diagnosed so early on...

ProudAS Fri 15-May-15 06:16:39

I'm autistic too. It affects different people in different ways so I can't really say what the future holds but things are gradually becoming better for those with the condition.

We are generally not the easiest of people to live with although if you know about it you are well on the way to finding suitable strategies.

Most individuals on the spectrum do learn to speak, hug and use the toilet. He is likely to find making friends hard but not impossible.

A lot of people on the spectrum find it hard to get jobs but the NAS are fighting to make it easier. I work full time in a role which really suits me.

All the best OP!

Marvel101 Fri 15-May-15 06:18:17

It's so hard not to worry about the future

DS has just been diagnosed with mild autism and it's the first thing I think of when I wake up and the last thing I think of at night

Is there any support groups for parents near you?

Littlefish Fri 15-May-15 06:22:17

I know it probably feels impossible at the moment, but try and see the early diagnosis as a good thing. It means that early intervention can truly happen, if you engage your "inner lioness" as LondonZoo says.

Google is not always your friend! I'm sure if you ask on the SEN boards, someone will point you towards an early years autism support group. Failing that, ask your portage worker (if you have one), or Children's Centre, or Speech and Language Therapist. Educate yourself and unfortunately be prepared to fight as hard as you can to access as much support as possible for your ds.

I agree that the SEN boards here are amazing, so informative and supportive to parents.

TandemFlux Fri 15-May-15 06:58:11

I've PM'd you.

FenellaFellorick Fri 15-May-15 07:02:28

Marvel is right, it really is hard not to worry.

There would be something wrong with you if you didn't worry! thanks

You can take that worry and you can channel it into getting support, onto working out what works best for him.

I don't want to say to you there there, it'll all be ok. I can tell you about my children, if that helps at all?

My eldest is 16 today. He's currently getting ready for school (mainstream). He's doing his gcse's. He has a place at college.

We knew from birth that there was something. I had severe pnd and thought he wouldn't make eye contact, went rigid if you cuddled him, etc, because he hated me. By his 18 mnth check up it was pretty much decided. He got his formal dx of autism at 2.5. We had an early years teacher come to the house 3 times a week from 2.5 to him starting f/t school. I also devised my own weird combination of sunrise and aba! (both camps would criticise me for that but it worked for us!) He didn't talk until he was about 7. By that time they were telling us that if they don't talk by now, they'll never talk. He was in nappies until he was 6. I cannot tell you how negative a picture the experts painted of the life he would lead. We used PECS. They then suggested makaton, then suggested putting him in all manner of special schools. It was a challenging time for all of us-not least of all my son!

My youngest is 14. He got his autism dx at 3. He got his adhd dx a couple of years ago. He was exclusively echolalic for many years. Came out of nappies at 5. He was what we now know is adhd passive inattentive type when he was younger. Now he is much more challenging than his brother! But he's well supported in mainstream and he also talks. He is even a grammar pedant! grin

They are both lovely, affectionate, kind hearted people who would make anyone who let them an amazing friend! They've both got over 20 hours pw 1:1 support in school, out of school support for social activities and they've got us, with our Fighting The Good Fight since 1999 tshirts grin

Nobody, nobody, no matter what their situation, whether it's autism or something else or nothing but the bog standard grin knows what the future holds. We just have to do the best we can and keep everything crossed.

This is a really tough time, the dx period. thanks

lambsie Fri 15-May-15 07:15:23

Ds has autism and severe learning difficulties and is essentially pre verbal, is not toilet trained etc. With the right care and in the right environment, he is a very happy child. He will never have a normal life but I am doing my best to ensure it will be a happy and fulfilled one.

MsAspreyDiamonds Fri 15-May-15 07:25:43

Ds has high functioning autism and is schooled within a special unit in a mainstream school. I will post later but his life has improved since diagnosis with the right support.

Please give the National autistic society a ring, they will help you with further access to information and support.

lunalelle Fri 15-May-15 07:31:44

I think early diagnosis could be quite positive. 40 odd years ago, in my young day ( hehehe) nobody knew why I was so weird and didn't trouble to find out.

GurlwiththeCurl Fri 15-May-15 07:36:13

My son has ASD and learning difficulties. When he was little, we were told he might never walk properly, or speak, or learn to read and write etc. He was on medication for bed wetting and didn't have a dry night until his early 20s!

But, now that I am bedridden with chronic illness, he is almost my carer. He brings me meals in bed, organises the things I need, watches over my medication, tucks me in and remembers all kinds of helpful things.

That clingy, frightened child is now a young man. He travels all over the country on his own. That non-speaking child is now a man who never stops talking. He can read and write well. He chats to everyone. He laughs, tells jokes. He is the cuddliest person you could imagine.

Yes, he still has issues, he cannot get a job, he has occasional meltdowns, he can be aggressive and rude to us.

But he has come so far in his life that we are in awe of his achievements.

Your child, OP, will be different to my son, but he will also be a person who amazes you. Good luck!

fatlazymummy Fri 15-May-15 07:44:48

Hi OP.
My daughter is 15 ,she was diagnosed at 21/2. Unfortunately she does have severe learning difficulties, so she attends a special needs school (which is wonderful). She has very limited speech but she continues to learn new words, so who knows how much her speech will improve?
As far as using the toilet, it took a lot of time and effort, but she became fully dry and clean at 10. I took the lead here, I didn't wait for her to be 'ready', because she never showed any signs at all, and it paid off eventually.
The biggest problem I have had with her is 'challenging behaviour' ie violence, which went on for about 4 years. She is now on medication, which has reduced the violence by about 90%, thankfully.
As things stand now, my daughter will never be able to live independently. Obviously that varies enormously, and it's impossible to tell what the future holds when they are babies. That's true for all babies though.
Initially I would try and find out as much as you can about autism and what help is available. I think early intervention is thought to be quite effective nowadays.

Fairylea Fri 15-May-15 07:49:08

Op I was in your shoes not that long ago. My ds is 3 next month and is undergoing assessment for autism and developmental delay. Like you with your little one I've always known something wasn't "right" and it took me until about 6 months ago to get to the gp and she referred us straight away. We've seen the health visitor for assessment and he's scored 160 on a test where the normal cut off is 59 so we are very sure there is something else going on. Unfortunately in our area the wait for the paediatrician is long although we should hear soon.

The special needs board here has been lovely. Someone told me not to think about what ds can or cannot do and to not think about the future as none of us may get there anyway so just take each day as it comes and that's what I live by.

Something that has really helped us as a family is being able to claim dla - you don't need a formal diagnosis to do so just to be able to prove they need more care than a child of the same age - we now receive high rate care for ds and lots of tax credit extras and carers allowance. It has meant we are about £900 worth better off each month which takes the financial pressure off so I don't need to return to work for the next 2 years at least and we can do more things with him to help his development (private swimming lessons as he wouldn't cope with a normal class etc).

There is light at the end of the tunnel. I still get very down, it is early days here too and I am worried about what will happen at school and nursery (he's due to start in sept part time) but I just try and get through things one chunk at a time.

Anomaly Fri 15-May-15 07:55:18

I think part of the problem of having children particularly one with any kind of SEN is you have to let go of the future you envisged for them. DH and I are both academic and I just thought our kids would be too. Finding out DS1 has learning difficulties meant letting go of the future I expected and focusing on happiness as a goal both in the present and future. Its really hard. Especially when all around you everyone else's child seems to be doing brilliantly at everything. You're left with a blank where the future you thought would be just isn't and no way of filling that gap other than waiting and seeing. Its scary particularly when you have no diagnosis. It will get better OP but partly that is about changing you're mindset.

CycleChic Fri 15-May-15 08:23:39

I think part of the problem of having children particularly one with any kind of SEN is you have to let go of the future you envisged for them

That sounds like a benefit, actually. Too many times, people me have fantasies abouthow life should be rather than opening up to the reality of their child.

OP, all I can offer is flowers and brew. It will work out. Promise.

Lilicat1013 Fri 15-May-15 09:24:16

I have two little boys both autistic, one is five and on his reports he is listed as moderate/severe and the other is two his diagnosis is informal at the moment but he is clearly autistic.

My older son attends a fantastic special needs school and is doing really well there. He does speak, it is pretty much all echolalia but he has a sense of humour and likes to chat with people. He kisses and cuddles and smiles.

He loves fish and can tell you a whole load of fish names, his face lights up when we go to the Sea Life Centre. He is not toilet trained yet but he is teaching himself to read. So in some ways he is very behind and in others he is ahead. I got a note home from school this week saying he has suddenly started doing 70 piece jigsaws, a week ago I wouldn't have expected him to be able to do any kind of jigsaw. He is full of surprises.

He doesn't have friends as such because he doesn't really understand that kind of interaction but lots of children seem keen to play with him when we are at playgrounds and similar. I am been so impressed how quick they are to understand and adjust their game so he can take part in his own way.

Other adults find him cute and funny which is nice. We were at the Sea Life recently and listening to the shark talk, aside from my two children the room was all adults. At the end of the talk my little boy started clapping and shouting 'hooray, good job' and 'well done' to the person who had done the talk. Which amused a whole room full of people.

He does have out bursts, when I had his younger brother I thought I had made a terrible mistake as the adjustment period was so hard. I didn't think it would ever get better.

Then one day when my youngest was six months old my older son laid down on the playmat with him. He just looked at him and said 'hello baby' and cuddled him. From then on they have been close. He always calls his little brother 'baby' or 'naughty baby' if he is being annoying but he loves to play chase with him and cuddle him. Their relationship is very sweet.

We are starting the process again now with my youngest who turned two the end of January. He doesn't speak, he does smile, cuddle and laugh. He is affectionate and enthusiastic.

He loves watching people play football and when we were on holiday he was watching some primary school boys play and going nuts with excitement when one of them scored a goal. Those boys loved him!

He has just joined a toddler football session himself which he is enjoying.

Like his older brother he also has a sense of humour, he loves being chased and tickled. He is very interested in what everything my older son is doing and you can see he looks up to his brother.

He has just started a special needs nursery the one his brother attended, and although the transition is rough at the moment I know he will get there.

I hope that helps somewhat to see what a picture of what life is like a little way down the line. If I can help or you just want to connect to parent in the same situation please feel free to send me a message. I know sometimes he helps to speak with someone who has been there.

ScooseIsLoose Fri 15-May-15 09:38:28

Hi op thanks for you it's bloody tough. My dd was diagnosed with autism and sensory processing disorder last year at the age of 4 we flagged it up when she was 18 months but it took two years to get a diagnosis. I have felt exactly how you are feeling and still do to some extent but it will get easier you just need time to get your head around everything. We are currently fighting to get dd a place in a special school as she is not coping in mainstream it's hard having to battle for everything but as parents that is what you do. At least with your son only being young early intervention can start and he will get the help he and you all need. If you want to ask anything about the whole process or I can help in anyway feel free to pm me. Also if you have a children's centre near to you ring them and ask to speak to their sn worker ours was invaluable and has helped us every step of the way.

DimpleHands Fri 15-May-15 10:16:39

Some lovely posts here. smile

OP I remember writing a very similar post about a year ago. My DS is 2.6 and has ASD. He was diagnosed at 18 months - I thought something was "off" at about 9 months and by 15 months I just knew. Everything you say:

"just fleeting eye contact, no words, no imaginative play, no interest in other children, no imitation whatsoever." - ditto for my DS at the same age.

I am afraid I didn't cope with it at all well - I had a full blown nervous breakdown and was diagnosed with very severe depression.

I had all the worries you do. I simply did not want to go on. I did not want me or DS to have the life that was opening up to us. But a year on, things are very different. Let me answer your questions (which were all the same I had) in respect of my DS. I obviously can't answer them for you and every child with ASD is different but I hope it will give you some hope:

1. "Will ds ever learn to talk?" My DS now has well over 300 words and is beginning to string some together. There is some definite echolalia (parroting) and he tends to speak mainly using set phrases, but every day his speech and language is getting better. Lilicat's post made me smile - DS is similar in terms of coming out with funny things. When he got christened the other week, he said "thanks" to each of his godparents when they made the sign of the cross on this head and when the vicar said he had now "renounced the devil and was clothed in the clothes of Christ" he cheered and had everyone laughing. smile

2. "Will he ever have friends?" My DS is probs too little for friends as such but he now loves being around other children at nursery and going to parties.

3. "Use the toilet?" For my DS, not yet, but he does know when he is doing a wee or a poo and will sometimes tell us, which is a good start. We think he will probably toilet train late, but that he definitely will.

4. "hug us?" DS loves cuddles and kisses and will often ask for them. He loves nothing better than getting his favourite book from the shelf, bringing it to me and climbing onto my lap, cuddling up and being read to.

5. "have a job?" Hmm, who knows? Too early to tell. But if he doesn't, then he lives with us forever and in my view that's not so bad smile. If that is the case, my plan is to buy a house in the country with lots of chickens and other animals (he loves them) and a little barn where he can do art or pottery or whatever he likes. Not such a bad life smile.

6. "Will he have any feelings for us at all?" Having seemed to barely know who we were, now DS could not be more attached to me and DH, he calls to us wherever we are in the house and is so affectionate.

7. "Will we be able to cope?" We are coping well. (I didn't think I would ever say that - honestly, you should have seen me a year ago!) Please go to the doctor and see if you can get some help for yourself. I was given anti-depressants and they made SO much difference. I only took them for a few months but they really helped me to get past those first few bleak months. And, more practically speaking, do apply for DLA - it really helps lighten the load.

8. "Will he have violent outbursts and hurt his sister?" DS has hit me and DH a couple of times (nothing too bad at all and that has stopped now - he only did it when he was frustrated and couldn't tell us what he wanted).

9. "Will he decline and stop smiling at us which he does sometimes?" No decline for my DS. He smiles and laughs all the time.

10. "Will he be happy?" My DS is one of the happiest children I know smile.

11. "Will we ever be happy again?" One of the replies to my post was from a lovely lady who said she had felt exactly the same as me at the time her DS was diagnosed but that now her life was full of joy. I thought she must be deluded! But now a year on... I don't think I would go so far as to say we are full of joy but are we happy - yes. We are still coming to terms with things a year on but it is so, so much easier than it was. You WILL be OK - things WILL get better.

A few things that helped me emotionally at the time:

- Posting on here (espec the special needs board - everyone there knows and understands what you are going through).

- Reading a wonderful book called "George and Sam" by Charlotte Moore about her two autistic boys. She writes brilliantly with real humour about her two autistic sons and has some great advice.

- Try to get plenty of sleep (easier said than done with an autistic child, I know), try to eat well, try to get out of the house for a bit, even if just a couple of hours a week doing something you enjoy. Try to look after yourself.

We can all help you with the practical advice too of course - but I get the feeling you need first to just take some time to get your head around it.

I'm going to PM you my old user name so you can look up the similar posts I put up when I was at the same stage as you - I got some really helpful, compassionate and lovely posts from some wonderful people and they really helped. I still read them back from time to time now.

Feel free to PM me if you need any help, advice or support. Things WILL get better, I promise.

JoffreyBaratheonFirstofHisName Fri 15-May-15 10:22:38

OP: don't despair.

My son was one of those kids who was normal one day, had MMR vaccine - literally within hours was never the same again. That was 1994. Aged about three he was diagnosed with atypical autism - he has a couple of other things going on as well - dyspraxia and some un-named muscular thing that gives him floppy muscles and makes even doing nothing pretty exhausting. 6 other kids injected from that same batch went on to become autistic.

He had a number of words when he was one, but then he lost all his language and wasn't to speak again intelligibly, til he was 4 or 5. He screamed. All day. Every day. When he was 2 and a bit, or nearly 3 I had him statemented by our Local Education Authority and he was in a special school's nursery unit from then on. They had the right specially trained teachers there (in the time before the special schools were closed down); he was in a class of 6 kids for years, and he thrived. He slowly got able to communicate.

Like a lot of autistic kids he was unusually good-looking. In most situations, to an outsider, eventually, he wouldn't appear 'autistic'. People think of 'Rainman' which is totally inaccurate. My son is actually quite social - once he found his niche (with the arty, indie kids).

When I used to get him ready for that bus to special school I wanted to cry some days. We'd never know what he could have been. I think we mourned for him as if the baby we'd had had died because this child was so different to that baby. Literally the diametric opposite.

It was a stressful time. Our marriage broke up (a few years later we got back together but in the meantime we lost our house and everything we had ever had). A teacher at the special school said to me once our son was the only kid left in her class that still had a mum and a dad at home. Before we split). I remember the day we got the diagnosis, we walked around the shops, just numb. Shell-shocked. I think we were numb for years.

I also remember when putting him in his little coat every day, wondering what his life would be like now. His older brother had an IQ through the roof and even from being a toddler was clearly destined for good things. His younger brother had everything going for him. But my autistic son? Who might he have been? If you had told me then, in 1995, that one day my son would be who he is now and where he is now - I would never have believed you.

When he first went to school he wouldn't talk, would only eat white, dry foods - a teacher sat with him at lunchtime. Slowly she got him to eat normally. Slowly, they got him talking. Slowly he started making friends.

Sadly the special schools were axed and at 11 he was thrown into the mainstream which was a nightmare for him. Away from all his old friends and security and teachers who were trained to deal with him, and none of the things on his statement being provided any more, he had a hard time. But a year or two went by and he found his friends - those quiet kids who like animes, and Art, and spent breaktimes in the library. He couldn't read til he was 17. He left school with no GCSEs whatsoever. He is intelligent. But has whole areas that are blank.

What is his future? Well he went to college and that was the making of him. He did Art and suddenly, he was surrounded with kids who 'got' him, didn't judge him, didn't care he was autistic... He truly has more friends than my 4 non autistic kids put together!

And last year.... he went to university! He was 5 years at college slowly getting BTECs to do it. The first time a lecturer mentioned the word university to us, we did a double take.

He has Disabled Student Allowance, and is about to get a lot ore help kick in for next year. He has lived in Halls all year and made friends he is going to live with next year. He goes out. He is obsessed by Game Of Thrones. He does Cosplay with his old college friends back home.

My only regret is my dad didn't live to see him go to uni. He was the apple of my dad's eye.

OP you cannot know what the future holds. But when I was precisely where you are now - if someone had said to me "You know he's going t be alright. He's going to grow up, be surrounded by friends, and good people, and he's going to go to uni" I would have never believed it. It seemed all that was in store for my other kids, not him. He couldn't speak, read, or write, FFS! Now my other son tells me when they were at college he would never tell his friends he was autistic. Most people figured it out eventually. He hated high school but loved college and uni and he has now found 'his people' and his passions. It will be hard for you. But don't think a single door is closed to your child. He may surprise you and kick a few down.

JoffreyBaratheonFirstofHisName Fri 15-May-15 10:28:46

Oh, will he ever have feelings for you? He will and they will run deep.

I have five sons. Only my autistic son ever spontaneously hugs and kisses his dad and me. When he is at home, he greets me with a kiss every single day. He is 21 and six foot three. ;o)

fanjoforthemammaries7850 Fri 15-May-15 10:33:19

My DD can't speak

But she had severe regressive autism.

But she communicates her needs, is affectionate and goes round with an enormous grin on her face 90% of the time, and is toilet trained.

And gives amazing hugs.

Don't despair thanks

fanjoforthemammaries7850 Fri 15-May-15 10:34:20

Plus DD,being non verbal, seems to be in the minority so don't give up on him speaking at all!

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