Advice for a parent struggling to accept

Own_My_Own

carerof3 wrote: »

There isn't any 'help' though, I asked if there was a 'buddy system' for aspie adults, but there isn't. I no confidence to go to new places on my own, and as I haven't any friends if I don't go on my own, I don't go at all..

My son was diagnosed at 16.
He tried to smash his head in. The paramedic that came out asked when had he been diagnosed with asd. We didn't know what he was taking about.

We changed doctors that week, and he was diagnosed 3 weeks later. Our new GP fought for it.

The childrens centre didn't want to know as they would get no funding for him as he would be classed an adult at 17.
But the diagnosis is all we have ever had.

Connextions couldn't help as he was not statemented at school. Was that his fault ?

There is nowhere for him to get any help where we live.

He seems to disabled for one thing and not enough for another.

princessdon

Yes I have had concerns (but also know that sometimes early signs can be age related, so it was on the radar but I hadn't approached them fully). I've suggested delay and they agree but that is all.

The problem is the child is so young (aged 4) so I can see where the parents are coming from when they say they may grow out of it. However, I have worked with ASD children for many years and I have to say I share the schools concerns. Child is mute - selectively, they will on occasion repeat words/sentences but never talk freely and can go months without any speech. They have socialisation problems, are unable to toilet train, food phobias, weather phobias and can get upset when things are out of routine.

School are finding it hard with a child who can't/won't speak, eat or join in so this is their concern.

I tried raising the subject over a relaxing wine and got the response. They'll grow now they are in school and by the end of the year they'll have caught up. I guess all I can do is support at this stage, though I haven't managed to get the discussion with a parent whose been there yet, maybe that is the wake up call.

Savvy_Sue

Own_My_Own wrote: »

He seems to disabled for one thing and not enough for another.

Own, have you been in touch with the NAS to see if they have any suggestions? How old is your son now?

princessdon wrote: »

Yes I have had concerns (but also know that sometimes early signs can be age related, so it was on the radar but I hadn't approached them fully). I've suggested delay and they agree but that is all.

The problem is the child is so young (aged 4) so I can see where the parents are coming from when they say they may grow out of it. However, I have worked with ASD children for many years and I have to say I share the schools concerns. Child is mute - selectively, they will on occasion repeat words/sentences but never talk freely and can go months without any speech. They have socialisation problems, are unable to toilet train, food phobias, weather phobias and can get upset when things are out of routine.

School are finding it hard with a child who can't/won't speak, eat or join in so this is their concern.

I tried raising the subject over a relaxing wine and got the response. They'll grow now they are in school and by the end of the year they'll have caught up. I guess all I can do is support at this stage, though I haven't managed to get the discussion with a parent whose been there yet, maybe that is the wake up call.

I think there is another possible approach: "Look Fred and Freda, I know you think little Freddie will have caught up with his peers by the end of this year, but the school think he could use some help with that process, which is why they are suggesting X, Y and Z. If you're right, then what harm will this do? He'll catch up sooner, and we'll all be happy." You can leave the 'And if you're wrong, better to find out sooner rather than in a year's time' part unspoken, if it helps.

It may be that the school will co-operate in a process which avoids 'labelling' / diagnosis, but acknowledges the current 'delay' and the issues it brings.

Own_My_Own

Savvy_Sue wrote: »

Own, have you been in touch with the NAS to see if they have any suggestions? How old is your son now? .

Hi Savvy_Sue, he is 19 now , and just been excepted on ESA.

We live in North Essex, and I have been told it has one of the poorest aspergers support systems in the country. This was by someone who could not help him because of cut backs in their organisation.

As he has never had help, I really don't know how he would cope with it, if there was any available.

princessdon

The problem is the school want to complete a CAF (that is how I know about it, as the parents know I do CAF's and wanted to know implications before giving permission). They are refusing to give permission for this. I need to try to get them to the stage where they will admit there are any needs as they do not want to entertain this thought. They are really great parents and baby was born prem and so they are clinging to hope that this is delay. I don't think it is (but am not a medical professional).

Also I agree with them that the child has some characteristics that don't fit ASD (as most do). They cling to these (eg they will hug my children, play and share etc). School basically said in no short terms - we think they have Autism or some form of diagnosis on the spectrum and sign here.

Given he'd only been there 2 weeks it has meant a digging in of heels, if they had approached it differently they may have had a different reaction.

They have agreed to come to our surfing group on Sunday (my OH and I run a surfing/bodyboarding session for ASD ch)ldren) and to speak to some other parents and meet the teenagers. I guess from that point I'll take each day at a time.

This is my godson so I want what is best for him to so feel between a rock and hardplate.

stiltwalker

My children are not autistic but do both have disabilities - a rare genetic disorder. My OH and I struggled for a long time to accept the level of differences that DD (not obvious with DS until relatively recently) had to her peers - we tried to convince ourselves for a long time that she was just late with physical milestones and would catch up and that it was due to her hypermobility rather than anything else. It was hard as she was very advanced with some things yet way behind with others and she has always been very reluctant to be a 'performing seal' and demonstrate her abilities to therapists and the like. So she would talk to us or do whatever physical task to the best of her ability but completely refuse to cooperate with the physio or SALT. A change of therapists has helped hugely as we now have ones who make a real effort to connect and DD rewards this with greater cooperation. We hung on to the phrase 'additional needs' for a long time with DD but are now quite comfortable saying that our children have disabilities (and also some amazing talents which we are equally, if not more so, happy to shout about). I'm not sure how you 'force' someone to get to this point or if it's even possible (probably, no scratch that, definately not) but it helps if you have friends around to support you when you do get to his point - here's where you come in. Good luck - Yes early intervention is ideal, but as the old phrase goes 'you can lead a horse to water..........'

covlass

Firstly I know how the parents are feeling, our DD was born prem I remember being told (without going into detail) that there would be some brain damage but how much & to what extent they would not day until she was older and we would have to wait to see if met milestones. I remember getting over one thing then something else would happen and then the bomb she may have Autism and was not coping at mainstream pre school. So much to take in I did not want to admit it, such a tiny child gone through so much already how can this be. To cut a long story short when I went to look at some SLD schools my heart melted, it was a classic case of the fear of the unknown in my case, and looking back now I feel I was focused on me not wanting labels, statements and various people talking about my child making notes filing in forms.............. and not about what was best for her.
Roll on 16 and I will shout from the roof top I have a child with special needs and I am proud.
Having a CAF is not a diagnosis, its about getting additional support and putting things in place to help the child.
I have no idea what the parents have gone through already I can only speak from a personal view, but if school bombard them with too much information to fast it can be off putting.

Karena_3

princessdon wrote: »

The problem is the school want to complete a CAF (that is how I know about it, as the parents know I do CAF's and wanted to know implications before giving permission). They are refusing to give permission for this. I need to try to get them to the stage where they will admit there are any needs as they do not want to entertain this thought. They are really great parents and baby was born prem and so they are clinging to hope that this is delay. I don't think it is (but am not a medical professional).

Also I agree with them that the child has some characteristics that don't fit ASD (as most do). They cling to these (eg they will hug my children, play and share etc). School basically said in no short terms - we think they have Autism or some form of diagnosis on the spectrum and sign here.

Given he'd only been there 2 weeks it has meant a digging in of heels, if they had approached it differently they may have had a different reaction.

They have agreed to come to our surfing group on Sunday (my OH and I run a surfing/bodyboarding session for ASD ch)ldren) and to speak to some other parents and meet the teenagers. I guess from that point I'll take each day at a time.

This is my godson so I want what is best for him to so feel between a rock and hardplate.

Hi.

If the school are worried enough and think they can put together a strong enough case to the LA they could request a Statuary Assessment of SEN.If the LA agree to conduct a Statutary Assessment then unlike a CAF parents cannot challenge the decision.They can give views but can't prevent the SA happening.Statutary Assessment also includes a medical which parents cannot refuse to allow to take place.The medical officer could suggest referal for ADS assessment if this was thought necessary.

Children do develop at different stages.My son was first picked up as having some difficulties when he was in year 2 at primary.He was eventually diagnosed with AS at age 12 and even then the professionals did not all agree.However he did not have the more obvious difficulties associated with ASD .
In the case you describe the child has delayed spoken language and is not yet toilet trained at four.A significant amount of help will be needed in school and could make a huge difference.

I still would not pretend to have completely come to terms with my son having AS however I would never regret agreeing to an assessment.In the end he was given plenty of other labels which were far more negative by people who did not understand him.

You can't force your friend to accept there may be a problem but please do stick with them whilst being honest when oppurtunities arise.

Karen.

princessdon

Thank you - Just taking it each month and as and when/if needed. When I say toilet trained they are, just they have a special seat and need to feel safe. I have child overnight approx 2 nights a month and he will use mine (but only downstairs). So overnight I have to take him down stairs even though his room has an ensuite. It is when he isn't familiar he won't go (to the point he causes pain and goes in clothing when can't hold). The stalls at school are proving to be a "wont go area". But he is toilet trained if familiar with the envrionment.

Thank you all for your valuable contributions.

sharjay99

My son falls on the spectrum somewhere but with multiple other disabilities (ADHD, verbal dyspraxia, behaviour management etc) I tried the blinkered outlook for a long time trying mainstream nursery and the likes. He was referred to the child development centre at about 2/3 but I was only given a diagnosis of developmental delays, enough to get him in an SEN school but not enough for me to accept he wasn't going to miraculously grow out of it. He received a better diagnosis when I demanded to see a specialist due to his behaviour at around 9 years old.

He is now 13 and I still don't think I've fully accepted it in my heart, you go through every emotion like it's a death, denial, anger and needing to grieve for the child you imagined they would become. You can only go through them though when someone professional steps in and gives you the firm diagnosis, without it there's always a maybe. No parent wants to be deprived of the first words, first time you let them out with friends without you, going to university etc etc

Four is still young, my first real insight was when the school refused to let him go from nursery to reception because he wouldn't of coped with it. I know adhd isn't generally diagnosed til a child is atleast 6 (could be wrong but that was half my struggle) although I'm not sure what other 'hidden' disabilities are the same