Our son was diagnosed with ASD a week before his 3rd birthday...

[Takiwatanga]

AmA

@lanaorana2 - I think people simply listening and acknowledging helps me most. I can get a bit annoyed if people try to minimize my worries, although I know they're just being nice, so I refrain from being arsey, ha. My worst fears are he will grow up unhappy and scared, in a home and still have violent meltdowns. We will do everything we can to prevent this. We have saught private help and used all the courses etc offered by the local authority.

@mozziemagnet - we have become firmer with him when he hurts his sister and will take him to his bedroom to calm. We stay there with him and sometimes hold him (bear hugs apply deep pressure which he seeks) and we don't leave until he's calm again. We then get him to apologize. His triggers are mainly people, lots of them, especially kids and noise. Also not getting things fast enough. He's at nursery and has a one to one at all times, he has an ehcp I had to grt myself as the LA wouldn't, and he has visual aids and support from the senco. A multidisciplinary team diagnosed him just before his 3rd birthday. He was assessed in different settings and by different experts :psychologist, OT etc

He did have a sensory den, but he didn't use it. We have other things in place to calm him. He has had input from salt and portage and we pay privately for other bits too, we saw a naturopath to help with diet issues and we will be going away to seek some more assessments in ages months, and gain more experience of how to manage challenging behaviors and mainly his anxieties. Going out can be really hard, I often use visual aids for him and this helps others see he can struggle and isn't being naughty etc. My dd struggles with him at times which breaks me. She can't cope with how loud he is and he is very rigid about things like TV and food and routine. We have recently applied for young carers for her and have family who help out by having him or her. We are very fortunate our family accept his diagnosis and support us as best they can. A typical day is he is in our bed after stirring through the night, we go down and he immediately wants his blankey, trains on the TV and juice, breakfast is a battle at times and getting dressed is a nightmare as he doesn't like clothes due to sensory issues. We use a visual board to show him what will be happening that day, we go out and car journeys can be hard, I have to have 1 kid in the front as ds has bit dd or hit her and I've nearly crashed. Driving with him is very difficult. We see friends, this can be hit or miss dependent on various things, some I'm still not sure of... When we get him he likes to play with cars or trains and likes to line or hoard these items, he loves bathtime and loves playing with his sister and pretending he's a baby and she's the mum, cute! He loves our dog and walking her. He relaxes with the TV or the tablet and loves a story before bed, mainly about dinosaurs, animals or trains. He is obsessed with the atlas and loves learning new countries. Some days are easy and others are soul destroying to be honest. He can loud and unregulated all days some days which means lots of violent meltdowns, or others days he's happy and running about fairly unaffected (seemingly)

@violet - thank you, I do hope so.

@DrWhy- my husband and I have traits but I don't think either of us are in the spectrum. I do have siblings and cousins with ASC though.

I don't get annoyed by the wrong terminology as I still get confused myself. I also realize most don't mean offense. I grt annoyed when people try to minimize our fears as I feel it's insensitive, but logically I know they're trying to be kind so I really try to remember that and then vent to other mums who have kids with autism. My biggest bug bear is :"no one knows what the future holds for any of us" which is entirely trye, but the world is hard enough without having impairments too. I just try to remain positive and focus on the now, but I am a bit crap at not worrying. Over time this has got better though. It's very corney, but it's really a journey for all of us as a family. My husband and I cope differently and my daughter is struggling with it all right now, which I find heartbreaking.

OP - thanks a million. If it's any help, both the men I know with (very severe) autism are not in homes and enjoy their lives rather a lot!

Adulthood was a great thing for both the guys. People tell you autism doesn't change, but they both got much calmer - and more sociable, which they really flourished from. One of them works part-time, he's become the lynchpin of a local charity. No one would have predicted that, I can tell you.

Everyone wants the crystal ball, and we all have imaginations - but none of the parents' grim imaginings came true at all. Indeed, things are miles better than you would have thought.

Thank you OP. A few more (If you don't mind me asking)

How is your marriage holding up/has your DH done as much reading as you have?
Has it helped having a dog? Does DS respond to the dog differently?
What was the age gap between your children/does his sister understand his diagnosis?
What kind of holiday do you attempt?/any tips-coping strategies would be welcome
Will DS be attending mainstream primary or are you already applying to a special school (are there waiting lists)
Do your neighbours know of his diagnosis or are you lucky enough not to have thin walls?!?

Many thanks and a hug, a and

@lanaor, thank you for sharing your experiences of it. It is always comforting to hear of positive experiences. :) it always makes me particularly happy to hear of adylklta with ASC working. I would love for my lad to have a purpose and contribute to society, I feel this is so important in happiness, but he may be happier watching TV all day, and that'll be fine too..
So long as he's happy. I think hoping he has a family of his own is too much of a leap, at least for now, but I'd love it if he did have special connections with people too. Again, he may not wish to, and if he is happy that way, I'll accept it. I have to keep remembering his idea of happiness is different to mine. It's a big adjustment and will likely last a lifetime. We have good weeks and bad weeks. In the good ones I can be fairly optimistic. When's it's bad here, it's really bad and I can't help but worry...

@MozzieMagnet - our marriage is going well at the moment, but we do clash repeatedly on how best to manage our sons trickier behaviors, particularly public ones. I've thiught to myself I could leave him at times, because my kids will always come first, and if he isn't on the same page it won't work. But I have to remember he's coming to accept things on his own terms and in his own time. Denial is strong with that one 😁 he has made progress though, but I do worry how he will cope in the future when our sons behaviors can no longer by blamed on him being 3 (he's nearly 4) I work with autistic kids so I do have some insight, more so than he does. At the same time, I am a worrier and I don't want to rain on his parade so to speak. He believes that our son will grow up and live a normal life and I think he thinks it'll all slowly go away.

Ds adores the dog more than any of us. The dog has made such a massive impact on his growth and is a wonderful comforter to him. She's very protective of him and he is by far her favorite human!

Our daughter is close in age to our son, so it is hard. We knew having them close together would be a challenge, but with the ASC on top, it has been really tough. Our daughter is very bright and we talk a lot about our sons autism with her, she asks a lot about it too. However she is still so young I don't think she fully gets it yet and will innocently say things like "when we are older we will both get married to someone" which is really cute, but I've cried over little things like this. It's impacted our daughter , it pains me admit. She's stressed out being with him all the time at the MO, due to the hols. He demands a lot of attention because he's so rigid and loud, not his fault and not hers either. I find this one if the hardest things to deal with. But we try to have lots of one on one time and I'm consciously tryibg to be more patient when she plays up and showing her lots of love and attention all the time as I am terrified she's damaged by all of this 😥

As for hols, we have never flown. We do trips away that aren't too far and quieter resorts. We have attempted well known holiday resorts and it was an utter disaster as it's too much for ds. We tend to go for 3 nights or so. I take my dd on separate trips away, for some us time.

Our ds is starting a mainstream school nursery soon. He has an ehcp and a 1 to 1 at all times. I am really unsure he will manage, we have to give mainstream a fair go though I guess. My gut feeling is he will need a Sen school when a bit older.

As for the neighbour's, oh gosh... Another source of worry. They know our son has autism, I am always quick to explain as he is very loud and screams the house down over seemingly little things (to us, not to him) our walls are thick, but I know they here us all, and I am sure they must get fed up of it. What can we do?!

Readibg that back, I wanna ammend the comment about I'd be happy watching TV all day... Obviously I wouldn't, bit of an exaggeration and totally undermining how well many with ASC do. I just meant in total contest to him working, if he wanted to be at home relaxing all the time I guess I'd have to accept it if it's what he could manage and made him happy. There's only so much we can expect of him to conform to our societal norms. He is his own person and may not be social or need people in the way we do.

Most people love watching TV all day! I know when I do I relish it :) You don't need to be autistic to have an appreciation of the more, er, contemplative life :) There is more to life than being useful.

OP thanks, you are being brilliant. One thing sticks with me having known the 2 lads for nigh on 30 years - how the future isn't as bad as their mothers thought at 3am when they were DS's age :)

Thanks OP. I appreciate both the time you have taken to answer and the fact you answered in depth. Sending you - as was written on a postcard I had once - faith, courage and fudge cake!
Also, hope you don't mind and certainly do not want to hijack but if you do get chance could you take a look and let me know if any of my son's behaviours resonate with you. Thanks and best wishes, Mozzie x
www.mumsnet.com/Talk/special_needs/3328857-Any-of-this-sound-familiar

Thank you ladies. Mozzie I will check your thread now. So sorry for the late reply, been so busy as per!

Thank you so much for the questions and words of wisdom to all of you too BTW x

If there was a test during pregnancy to determine if a child had asd would you have taken it? Would you have aborted if so?

I ask this because my childhood and adolescence was destroyed by my asd younger brother. I have PTSD from it. I can’t bare to be around him even now.

When I got with my dd my worst fear as asd. As she is seemingly unaffected, I feel very lucky. I am getting sterilised very soon. I don’t want to run the risk.

39 hour, wow that's a powerful question. I too have been sterilized, before knowing about the asd for sure, but in hindsight I am glad I did as it wouldn't be fair to the kids to have another child with ASC. Our ds with asd is too demanding as it is. That said, I wouldn't have aborted for asd. We ran a high risk of ds have downs syndrome and I wouldn't have aborted for that either, turns out he doesn't though.

It's a very valid and thiught provoking question, but admittedly leaves me feeling uneasy as my son is the love of my life, along with daughter, and it pains me to think people would abort because of asd. That said I can understand your experience must have been very hard, I know it has been for my daughter and if she ever went on to abort for asd I would be very sad, but at the same time she has lost out on a lot already because of her brothers asd and has anxieties and stress which breaks me, I know this is a direct impact of my sons rigidities, loudness and frequent violent meltdowns. It's just so hard. I'm so sorry to hear you struggled so much. It can be incredibly hard for siblings. We are actively trying to put our daughter first and try to work at helping her deal with it all.

I don’t mean to say horrible things or ask horrible questions. I know it comes across very strong.
Abortion doesn’t sit well with me either in most situations bar medical need. I think I am coloured by my PTSD.

My brother is 16 now. Doesn’t wash. Doesn’t brush his teeth. Won’t wear appropriate clothing. He is very very very violent if he doesn’t get his own way. He also exhibits incredibly inappropriate and violent sexual behaviours. He is classed as at the low end of spectrum.

Our ds was a dream baby, so passive and calm compared to our roevious DC. Then all hell broke loose at 10 months and he became a biter and screamer, was so shocking and utterly heartbreaking to see him so angry. The transformation still shocks me to this day... This was exactly how it appeared to us! I still get teary thinking about how hard the world seems to be for him.

OP my ds is older than yours and I recommend seeing an occupational therapist, ours changed our lives.

I would like to add, I personally wouldn't abort a child so got me it would be absaloutely not. But if someone did, because of asd, It would trouble and sadden me, but ultimately it wouldn't be my choice to make.

He won’t ever be able to be independent or have any real quality of life. As a family our biggest concern is that he’ll end up being a rapist as his behaviour is really getting to that extent. It’s awful.

I think of siblings of disabled children the expectation of ‘help’ for the parents is incredibly hard. The parents may not directly ask you for help or expect it but when they die or become to old to be battered by a 6’4 man for asking him to flush the toilet, what happens then?

30hours I really appreciated your question and your point of view. Perhaps you could do ab ama thread about being a sibling of a child with ASC, I'm sure it would help many!

Christmas, we are seeing a team of professionals privately soon, we Sr every excited. Thank you!

Hello 30
Not my thread and OP I am sure will reply when she sees it, but, if it's not too painful for you could you explain why your brother's ASD impacted on you so badly and what your parents could have done. Thanks in advance x
(I have 3 DC and the one with possible SEN is the youngest. Had DC1 or DC2 had similar issues I would not have had anymore. But that is not to say I would wish away my DS as I love him unconditionally.
I sometimes regret having had 3 children full stop and often feel sad that DC1's life was changed not for the better when both siblings came along (large age gap). I feel guilt that my eldest does not want children of her own.
But even though I am not pro-life and I did have amniocentesis twice I cannot say I would have aborted, no. My son has a quality of life. I have fears for the future for his independence, relationships etc but he is kind and loving until he's not
I think it is difficult for siblings both in terms of being sidelined and witnessing challenging behaviours or worse being at the receiving end...I try and lessen the impact by spending 1-1 with them all at different times, dividing and conquering and not forcing family time/expectations of them being responsible for him in any way but I do not always manage it. You love all your kids, you try to safeguard them all, you split yourself up to the extent there's no space for you or your relationship...but with SEN sadly there are impacts on daily life and there are accommodations that have to be made, sometimes by all members of the family.
I am sorry you had hard time love and totally see where you are coming from

Sadly the siblings of asd children get a massive booting on mn! Just for existing.. and daring to say it might be a bit tough for us too.

You sound like a lovely mum. Your ds is so lucky to have you.

30hours, have your parents looked into a group home?

30 hours, that's very upsetting to here. Mozzie answered you perfectly, far more eloquently than I could have!

Hear *

x-post [waves to OP] x

I think I am probably asking a very selfish question. I work with children with autism and I spend a lot I time thinking whether I am getting right when talking to parents.
If you could speak with brutal honestly to the people who work with you and your child what would you say.