Things I would have done differently

[Guest hallyscomet]

Hi,

 

Just thought this could be a good topic, for us to each type in things we would have done differently, as a parent of an ASD child, from where we are now, looking back.

 

Just thought some of our comments here may be helpful overall, sharing what we know now...

 

"Things I would have done differently are:-"

 

Still thinking of mine, will edit soon.

[justamom]

Hi, hind sight is a wonderful thing and things i would have done differently would have been, not to blame K for his behaviour... When we did not know about his AS he was just a "naughty" child who was very active and full on and did some strange things. We now know the reason for all the behaviour.....

 

When we found out he has AS and things kinda fell into place., when we got the dx dh changed completley towards K and their relationship is so much better now. They were constantly at each other.

Edited May 4, 2006 by justamom

[call me jaded]

I never beat myself up about what I did or didn't do because I've always tried to do something.

 

Dealings with other people is something else. One of my 'durr' moments was to assume that because I saw physiotherapy being carried out on both tours I had of the school, that meant that speech therapy was also happening. And I wish the paed had taken my worries about my son's diet and failure to thrive more seriously.

[florrie]

I started writing this as it is something I think about all the time but it bacame so long and rambly that I decided not to send it as no one would probably read it as even though it makes sense to me it probably doesn't to anyone else,

 

I kind of realised there were so many things I could have done differently and they would certainly have had a different outcome, and I'm certain that if I'd got it right from the begining if I knew what I knew now, the outcome would have been better but may be it wouldn't, maybe it would would have been different.

 

I'm convinced that everything had been just so everything would have been fine and I'm certain some things would have been better ie professionals having more understanding instead of prejudcice of all different kinds which has made things worse without a doubt for both of us.

 

If I knew what I know now sometimes I think I would have put him in a home because my probs in coping with trying to access help for him caused additonal distress to him I'm sure and he would have been happy he would have know no different, and I wouldn't have to worry about how he will cope or survive in future, he lives on his own with no support and my worry is people take advantage of him he has mental health probs and aggression particularly against me which i've been unable to cope with because reminds me of childhood and my fathers awful violence and metnal illness, but he was like this from a baby ie screaming non stop and tantrums and I ididn't know why (sensory probs I reckon) so bad they drive him mad butno one acknowledges this. But I still believe it is possible that he could come through if he could do something with his interests, but I don't relate to his interests can't even organise my own self so I don't know how to help and believe me I would if I knew how.

 

I kind of agree with call me jaded, there is no point in saying what would you have done and as LOuise Hay says which I do agree with, "you did the best you could with the knowledge you had at the time" and I find that a great comfort to myself when I start beating myself up about what a failure I am and the guilt trip I do, even though it wasn't me that got it wrong for my son except for my breakdown related to professionals lack of understanding and putting in place harmful and not helpful things, i blame myself for not having been able to deal with that even though I know it's not my fault some of it is which I'm still struggling with, event hough there is no point.

Edited May 4, 2006 by florrie

[Tez]

I would have believed in myself more and not allowed so called experts convince me that I was wrong. My biggest mistakes have been when I haven't trusted my instincts and so have procrastinated too long.

[Guest hallyscomet]

I guess we all know what I am going to say and that is I wish I hadnt gone ahead with the MMR boost at age 15 because to me he appeared to be coping in mainstream up until then, and I keep wondering how different things might have been if he didnt have the reaction he did.

 

As far as diagnosis and everything, I always happened to be at the right place at the right time to get the right assessments and diagnosis, but I would have been a lot kinder to myself, as a long time I kept thinking there was something I was doing wrong as a parent that could change everything, these days I realise my son was very lucky to have a caring spot on mum, who noticed everything that didnt appear NT. So my boy had early intervention everything he needed thanks to all the wonderful support network that was setup for him.

 

I am grateful I didnt have to go through some of the struggles some of you parents had getting a diagnosis, but the biggest resentment I had was getting my family to see it. My lesson here was they dont live with it 24/7 so can never truly understand.

 

Hailey

[stressedmumto2]

I don't have a dx for my son yet but there are lots of thing's I would have done differently if I knew then what I know now from finding this site, taking part on a course specially for children on the eutistic spectrum.

 

One of the things I would have done is I would have never put him into time out, before I done the asd course I had done a parenting one which said about time out, from being a toddler I had always used time out in buggy, chair, step and as he had got older it was in his room and various other rooms where I thought there was no distracion/stimulation anything that could be damaged. But everything at this time was dangerous to my son. He hated time out and never learnt from it instead he would trash where ever I put him. I'm still waiting to get windows repaired.

 

The other thing I would have done is had more trust in myself and not listen to what others were saying.

 

The big thing now i'm learning is not to have trust in others and to never expect help from others.

 

You need to help yourself, be kind to yourself and most importantly try to give yourself time out to heal.

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[bjkmummy]

i would have listened to my instincts more and would have kept hammering at doors to get a dx for my son earlier. i believed the hv last year when she just siad he didnt like change and now a year later have a son with autism, dyspraxia, adhd and sensory issues. i fi had done something sooner he would have got more help plus hopefully would have had help at school in place before he started rather than now having to fight with the school to do something.

[DaisyFulkirk]

Can I have some 'things I wish my parents had done differently'?

 

I wish they'd pursued a diagnosis for me when I was very little, until of waiting till I was quite big and really struggling.

 

When I got my diagnosis of autism it was the start of being allowed to be different, for me, and not trying to be the same as everyone else or it being my fault that I was finding it hard to make friends.

 

I wish they'd started accepting (believing?) my diagnosis when I got it, instead of 18 months later. It was a very hard 18 months.

 

Here are some things I am glad they did do like they did, for balance.

 

I am glad that they kept me in mainstream schools - it was very hard, horrible at times, but I think I am better at dealing with the world now than I would be if I'd gone to special school.

 

I am glad that they encouraged my friendship with other disabled children and my participation in the disability rights movement from the age of 9 - doing that has given and continues to give me unique support and really good friendships and a LOT of confidence and ability to articulate for my needs.

 

I am glad that they waited until I was a bit older to start learning to drive, I was calmer and more grown up and I think would have been a bit of a disaster if I'd started when I was 16 (you can when you've got a physical disability, usually it's 17).

 

I am very, very glad that they encouraged me to go away to do my degree and not stay at home - the first year of living away was complete hell but I think I'd never have learnt to live independantly and use PAs and everything else if they hadn't done that.

 

 

I am 20 now and I'm not even sure that there was such a thing as recognition of 'high functioning' girls as autistic when I was very tiny, so maybe that isn't my parents fault, but as this is wishing...

[jb1964]

If we'd had our daughters diagnosis when she was little (she was 12), I think I would definitely have given my brother some choice words instead of me feeling like a failed parent of a badly behaved child.

 

Although I feel we really did try even though we didn't know at the time - I wouldn't have punished her so many times for things that she found so hard to cope with. I would have tried to change my speaking to be more precise years ago - instead of expecting her to understand me.

 

I would have been more on the schools back instead of expecting her to deal with everyday problems that she couldn't.

 

There are probably many more that I can't think of right now.

Jb

[mel]

i wish i hadnt listened to my health visitor. DS didnt walk til he was 3 and didnt talk til nearly 4. unfortunately i listened to my health visitor who just said he would do these things when he was ready. oh for hindsight i could have done a lot more had i not listened to the dozy woman.

[Viper]

I only have a few things I wish I hadn't done. i don't think we should be too hard on ourselves.

 

My husband was in denial about Dodobird, you know the kind of thing, male pride and all that. No child of his could have any problems. I let him have his way and didn't do anything for Dodo until her dad finally said "is it normal for her to be having tantrums at 9 years old?" I then got things in motion and she was DX before she was 10

 

Dodo used to be scared of the grass in the garden and we thought she would get over it if we showed her it was ok. we used to deliberately touch it and walk on it in bare feet knowing she hated anyone touching it. That is one of the things that haunt me. I know it's silly but there you go.

 

Another thing I wish I had done was to check my DD had knickers on every time we went out. The times we would get some where and she had a bare ar*e. one time we went shopping and she was sat in a trolley with her skirt up at the back, we wondered why people kept looking at us until we went round the back of the trolley and saw her cheeky smile Another time I sat her at the top of a slide and she just stuck there. She had a habit of removing her knickers at every opportunity.

 

Sorry to be so flippant but those are the only things I can think of. As for Ben I have no regrets. The second time around you kind of know the drill.

[oracle]

Very interesting because I can actually say what I would have done differently because I am now doing that with Matthew

 

When David was just 3 I first stepped onto the Merry-go-Round of professionals who would not listen to me. I kept being told that 'I' was the problem. It took 10 years to get David his dx. It took us 6 weeks to get Matthew's. Some difference yes? That was probably the biggest I would have done that different - and before you rush to say but they probably realised they made a mistake with David by that point - NO. Matthew was diagnosed before David.

 

Another thing I did differently was to take Matthew out of school as soon as the cracks began to show. Not really knowing what the problem was with David he was literally forced through the system until he cracked. Matthew came out to avoid the crack.

 

David never had the chance to learn about himself from an early age because we did not know what to teach him. Matthew probably knows as much as we do about his autism and understands more than I thought possible age 9.

 

All of this makes me very sad about what happened to David and having the chance to go back and do it again is no real consolation - well not for David. The proof of this pudding will not really be seen until Matthew is an adult as David is now. Will we have managed to avoid all of the pit falls with him that we did not with David? Only time will tell.

 

Oracle

[lancelot]

I would have ignored all those well-meaning people who said 'You're too soft on him... He's got to learn... He'll get used to it... Don't give in to him...' about things that I now know were sensory sensitivities, social overload, fear, and pain.

 

Mind you, I was really horrible to him just this morning about not being ready for school, so maybe I would have been informed-but-nasty?

[Flora]

I'll just make a list

 

1 I wouldn't have sent either of the boys to nursery (certainly not a mainstream one)

 

2 I would have been more clued up when Luke was dx because he was clearly classic autism and glue ear fogged the whole thing... initially his language delay was attributed to loss of hearing

 

3 I would have used pecs for Luke because he was 6 before verbal communication was possible and looking at videos of when he was younger all he did was scream to communicate and I got cross with him I feel sick when I look back on that and can't believe I couldn't 'see' what was before my eyes

 

4 I would have been much more careful in how I dealt with William. I remember getting very cross with him when he appeared to not be listening and I knew there was nothing wrong with his hearing

 

Even now I have a very deep fear that in a few years time I going to be looking back on this time and see clearly things that I should be doing differently. The worst part of all this is that I feel so stressed myself that I KNOW I'm not functioning aswell as I could be and that vital time could be being lost. I just wish I could take the bull by the horns and take both boys out of school because I'm certain that would alleviate a huge amount of stress and then we could all be allowed to function better. Unfortunatley that decision has to be shared with their dad who is of the opinion that forcing them to do things will cure them.

[Bagpuss]

I would of spent less time feeling completely guilt ridden for feeling resentment, wishing life were different, wishing i were a better mother, wishing she didn't have autism, wishing... I would also of chilled out more about the little things, that seem huge at the time. I would of trusted my instincts more and had more faith in my ability as a parent to know whats best for her and believed in myself more. I'm at a place now in my life where I feel so much peace. Not sure how or why it came about, other than I wish (again) it had happened sooner. I completely accept my daughter for who she is. I try to live each day as it comes, the fullest i can, and when things get tough I know that there are always families far worse off than us. Alot of what I have writtan is to do with my emotional state, and I suppose looking back, maybe all parents go through this process and come out the other end like us. Maybe its the norm to feel all of the above. As well as the autism, our daughter was diagnosed with MD at 3,and we were given the worst case scenario, which was that she would become severly physically disabled and her life span would be reduced to 30's.......by the time the Autism diagnosis came when she was 5, we couldn't of possibly have felt any worse than we already did.

 

But most of all, I WISH I'd found this forum sooner

[PinkSapphireAngel]

I too wish I had found this forum when Luke was a baby/little.

Also I really wish I had known about all the various conditions when he was little as I know I would have insisted on the proper assessments and got the dx and help for him earlier and might not still be fighting now!

It is hard not to beat yourself up about these things and I often do get annoyed with myself thinking of the difference I could have made if I had spotted the signs when he was little, I mean I knew there was something wrong but if I had known what to look for then I would have known so much earlier,

 

But then I get annoyed because I remember that was the various doctors etc we were seeing's job, it was THEM who SHOULD have seen things earlier as they were supposedly the experts not me!

[Suze]

I,m haunted by my sons face as I left him at nursery bawling and screaming ............they used to prise his body off me.I wish I had,nt sent him to nursery..........I foolishly believed if he socialised more he,d begin to enjoy it.

[Flora]

I,m haunted by my sons face as I left him at nursery bawling and screaming ............they used to prise his body off me.I wish I had,nt sent him to nursery..........I foolishly believed if he socialised more he,d begin to enjoy it.

 

Me too Suze I remember getting in to the car outside the nursery and being able to hear his screams from outside the building. If I dwell too much on it I cry and actually feel real anger towards myself back then.

[Paula]

I try not to look back because i beleive i did the very best for my son at the time with the information and experiance i had.

 

I was only young when he was born my early 20s id a 2 year old daughter and he was also born with the bi lateral choanal atresia.I coped as best i could.

 

I wouldnt want to relive those early years againe not even if i was given a million pound to do so.

[curra]

Although I've always tried to do the best for my son, I have also made mistakes, such as leaving him crying at the nursery where I had to leave him in order to keep my job or pressuring him to do things that he wasn't prepared to do yet such as getting dressed, being tidy, being polite to others. I shouldn't have listened to other people, teachers, doctors, relatives etc who used to say that he was just "spoiled" and a "mummy's boy". But most of all, I shouldn't have listened to my ex. I should have followed my gut feeling and get a dx and a statement when he was a little boy.

 

Curra

[florrie]

I wish I hadn't had the mmr vaccine done either, especially as I had reservations about it as I'd read negative stuff about vaccines in general, but not enough to make me seriously concerned but this was before the info on mmr, that we now have and I wish i'd trusted my gut feeling and had the confidence to say that I didn't want it,instead of going along with status quo, J had his in late 80s when it was first out and booster in 91/92 and went into coma three days later, but i didn't link it to vaccine at the time and still don't know for sure whether it was but he had a bad reaction on first one where he became feverish and his leg swelled up

[DaisyProudfoot]

Not listened to the Educational Psychologist who said Martin was a normal child. My boy went through around 4 extra years of misunderstandings and frustrations that he shouldn't have had until his SENCO advised I see his GP. He was diagnosed within just a few months.

[jen]

The only thing I wished I done was take my child to casualty when he came home from school with bruises and carpet burns.

Everything else has been a learning curve that I have needed to go throught so I could understand my son better and not only handle him better but deal with the teachers and other people he comes into contact with to his advantage.

 

Along the way I have met some professionals (teachers) that are not fit to teach or be alone with children. However, in my sons present school I have met a fantastic headmistress who will listen and try things out. The school teachers, LSA and TA who are also a fantastic group of people and who are learning all the time from my son.

 

Jen

[Guest hallyscomet]

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