Aspergers/ASD support thread

cazscoob

thank you so much for your replies, i think i just breathed a sigh of relief when i read what you both hed written and showing it to my OH has also shown him that there are similarities!. we have always put his behaviour down to being just him but more recently with all the comments i started to question it all.
he isnt scared of danger and like to jump off things and he runs, lets himself out the front door and just goes, theres no stopping him. we have found though that he is terrified of the swings at the playpark?
he bites himself and us and bangs his head, he doesnt seem affected by this pain? he cant sit for any length of time but does sleep very well. he loves his bed but still has a bedtime bottle as this is his thing. we are not really at the clothes stage yet but he does prefer to be naked, he hates nappies but i feel he is still too young/immature for pants.
medication is not a route i would prefer and would look into other things first. i will definatly look into the EyeQ!
he is a loveing boy when he wants to be and he does make us laugh and brings us lots of joy aswell as the tears and wanting to bang our heads off the wall!

sorry to be nosey but can i ask how old your children are and when they were diagnosed. also did you pick up on something not being right or was it someone else? thanks again

softwaremad

Hi all again,

Jeez my daughter has just gone back to school this morning - i have spent the day in bed - the last six weeks have been utter hell. She doesnt want to go out anywhere at all since starting this new school. I dont really know where to start to be honest, life is a bit hard right now. Am getting ready for another nervous breakdown i think ( i tend to collect these like stamps!) LEA are being !!!!!! again refusing to amend her statement thus making their enforced choice of school for her unsuitable - when is this going to end?

Sounds like an asd child to me cazscoob - my dd doesnt do clothes - she hits her head against things all the time when having an overload - also she has started biting herself - some nice child in school taught her this - its wuite hard to break!

as a young child she put her hand in the grill when it was on and didnt flinch at all - so they typically have a very high pain threshold!

19 months old - the majority of diagnosis occur at 3 yrs of age although some children can get diagnosed earlier. Don't let this get you down mind. Sounds like he is very mobile mind my dd didn't start walking till her 2nd birthday and has mobility issues today still! i potty trained her at 3 yrs as that was when she seemed ready - don't forget you always know best as his parents and anyone who stares tell them to get a grip - this is the hardest thing as pressure from the peers i always found and still find the hardest to deal with! nowadays i rant at them rather than my dd - hubby also gets a lot of it if there are no other !!!!!! around!

my dd comes out with some fabulous stuff mind has me in stitches - there are pluses & minuses for everything -

I have been told that children can not be on ritalin whilst going through adolescence so be careful anyone choosing this root as although it is good at chilling them out - it would be hard to have to deal with them full on for several years after you get used to a ritalin life with them.

god i hope this makes sense

Mandles

cazscoob wrote: »

thank you so much for your replies, i think i just breathed a sigh of relief when i read what you both hed written and showing it to my OH has also shown him that there are similarities!. we have always put his behaviour down to being just him but more recently with all the comments i started to question it all.
he isnt scared of danger and like to jump off things and he runs, lets himself out the front door and just goes, theres no stopping him. we have found though that he is terrified of the swings at the playpark?
he bites himself and us and bangs his head, he doesnt seem affected by this pain? he cant sit for any length of time but does sleep very well. he loves his bed but still has a bedtime bottle as this is his thing. we are not really at the clothes stage yet but he does prefer to be naked, he hates nappies but i feel he is still too young/immature for pants.
medication is not a route i would prefer and would look into other things first. i will definatly look into the EyeQ!
he is a loveing boy when he wants to be and he does make us laugh and brings us lots of joy aswell as the tears and wanting to bang our heads off the wall!

sorry to be nosey but can i ask how old your children are and when they were diagnosed. also did you pick up on something not being right or was it someone else? thanks again

Mine is nearly 5 and was just 4 when diagnosed. I always knew that there was something not right as my others are good kids, even though 1 is very strong willed.I was told by the health visitor that it was the terrible two's and that he was just " an individual". My lad also always tried to escape. It did not matter where he was and if he was happy, he always tried to escape! I suggest locks on interior doors too. My son burnt down someones house!! He also never felt pain and is always having accidents. We should have our own parking spot at the A&E.

My advice is to find a really good playgroup when he is due to go.Visit a few and really look for one that is with the times and ask lots questions. If it wasn't for the nursery i would still be wondering if it was not just me being a rubbish mum. I went as i wanted a bright place and one that was really safe and i made a huge issue , which i do wherever he goes , that he WILL try to escape. They said he is the only child to ever in all the time that they have been there to unlock a really high lock. He is so quick and very bright. The playgroup approached me after about a month and said that would i mind getting him referred to a child phsycologist as they thought he was on the autistic spectrum. I was so upset but it was the best thing ever. He now has funding for someone to be with just him one to one and also will when he goes to school. I also get disability living allowance and carers allowance which really adds up and enables me to have the respite we need, make the house safe for him and buy things he really needs to help with this.

There is just so much help out there once you get a disgnosis. You have to fight hard sometimes but it is all worth it. He is still a nightmare but when they said he had aspergers i stopped him watching so much tv, stopped him drinking cows milk and instead gave him goats milk(i think this was an important thing) and i gave him omega 3 tablets daily. Within 1 week his anger fits had completely stopped. It was totally amazing. I don't know which one did it but it just shows that things around can affect them.

I dont think that i will ever give him drugs but that is just me. To be honest if i gave him a ds console he would sit with it all day if i let him as he has suddenly got obsessed with that (that is why it is now hidden from him...although he climbed up and found where it was hidden(6ft off the ground under a load of sheets!). So some can have quiet times but this is not the best way.

I just rememberd, they often are obsessed by thomas the tank engine and line things up.well, i know that was a sign and what mine did.

Going out and getting away from it all , even for 2 hours is one of the most important things for my sanity. I suggest that maybe you do that. there are so many support groups and even holidays for you or for the siblings which i have heard are good.

You'll probably cry if you do get a daignosis but i found it an excellent start and things definately got better after that. As i say so many like blue monkey and savvy sue are brilliant on this thread and this has been more help that any other place to me. So don't let it get you down, there is so much help here and see if you can go out with your other half or a friend for a couple of hours as it sounds like you need it. Go somewhere peaceful!

blue_monkey_2

Caz,

Just a quicky thile tea is cooking. You could be writing about my son, he does all of you describe.

For me he started the school nursery and he was 3 1/2 - within 2 weeks he had a teaching assistant as they could not cope with him, he would hit the other children and would spend the whole time under the table - amongst other things. They gave him the TA and I went to the docs after that. I had questioned it at his preschool but they said it was 'just a phase' so I stopped sending him in the end as I was sick of being pulled aside and being told he did this, that and the other.

My son was early at everything crawling at 3 1/2 months and walking at 7 months - yes, on his own, he never wanted to socialise with other kids and often ran off. He could never sit in the buggy and often threw himself out, in the end you stop going out because it is just easier. It is also hard to get people to understand.

Ryan is now 5 1/2. I've seen about 6 paediatricians in 2 years and it is the samr thing each time going over and over the same things. It is very frustrating!! I've actually lot count of how many people I have spoken to. He has to have an assessment for his autism at the 'communications disorder clinic' this will specify where he is on the spectrum (we do think Aspergers) until then he has ASD. We have been waiting 2 years for this appointment, I know other people who have had their appointments and they have a 6 month wait, we have not got ours yet but I know someone else who it took nearly 4 years for a diagnosis.

He was, a few months back, diagnosed with ASD, OCD and ADHD. This took 2 years. I will warn you (as will everyone else) that is a very long and frustrating process to get an actual 'diagnosis' but this does not stop you getting DLA and statementing through schools, the docs paperwork does help though. I wonder why I am bothering sometimes but then i have to realise that it will ensure my son gets all of the help he needs through school and life. And this is the most important thing.

Please do ask any questions here that you feel you need too, also to vent and scream, we have all been there so can totally understand your frustrations.

cazscoob

Mandles wrote: »

I always knew that there was something not right as my others are good kids.

you dont know how good this is to hear! the rest are great really calm and have alwasy been really easy. Charlie is just so much work and is always labelled as 'the bad boy' i feel he is always getting into trouble and i feel awful some nights. i had to get a job as i felt i was falling apart and a crap mum. was told by the HV that i will be asked if it was a happy pregnancy and what i was like after the birth as this could have a lot of affect on his behaviour? have you heard of this? i had an awful pregnancy as it was thought charlie was a twin and we lost one early on, we are also lucky to have him as we were told it looked like i was having a miscarriage from the blood tests and scans. i did have personal issues at the time too so have got the feeling that its my fault?

i cant tell you how much better i have felt with all your replys today and cannot thank you enough! luckily we have a great HV and doctor who are willing to help us. they have applied for him to go to a nursery close by that will take a child of his age and with his behaviour issues. the appointment is in october with someone from the childrens mental health team and they also want him physically checked out.
im unsure of the dla etc that you talk about do i not need to have something to say that he has blah blah before applying?

its funny reading some of the things you have all written as im sitting nodding and laughing, its just like reading about the little monster lol!
i will have more questions if you dont mind but my right now i cant think! i think its relief to be honest x

Mandles

oohh just remembered another thing. They often have hightened senses, touch, sound and taste. if mine touches hair he gags and when he was little he often gagged with smells of things like sweets. He also has never been able to have a cot mobile as the music from them terrifys him. He cannot bear loud sounds either.

edited. sorry, i thought you did. apologies(re. dagnosis letter)

blue_monkey_2

Mandles, I did not have a 'diagnosis', I sent the doctors letters from after he was first seen and was being referred to someone else, and his IEP. I only got Middle Rate though so maybe this was why. They contacted the doctors and the school to verify everything anyway.

It is however a very long form caz so be ready for that, take the full 6 weeks they give you to fill it out, there are some helpful guides so ask when it is ready.

It sounds like you are getting lots of help and support though which is fantastic.

blue_monkey_2

SM, It sounds like you need a day in bed so please do not feel bad. On Friday I am going to be sitting there watching TV all day, just me, on my own, watching what i want not having to do anything or having anyone yell at me. Can you feel the excitement!!

What happens at the school, do they have a support unit or anything? What happens now, have you managed to appeal the school choice or anything? I think there is still time.

Savvy_Sue

Mandles wrote: »

As i say so many like blue monkey and savvy sue are brilliant on this thread and this has been more help that any other place to me.

Thank you, I tend to say the same few things over and over again, because I've only had the 'mild' version to contend with, but I'm about to say a couple of them again.

First is that if you are having problems with school, IPSEA are your friends. And others have mentioned Parent Partnerships, who appear to be able to help with a wide range of 'issues'.

Second is not such good news for cazscoob, but it may be very difficult to get DLA for such a young child, simply because ALL young children need a lot of time and attention. The trick is showing that your 19 month old needs significantly more. And I'd recommend getting help to do this.

And finally:

cazscoob wrote: »

i did have personal issues at the time too so have got the feeling that its my fault?

THIS IS NOT YOUR FAULT! Not no way, not no how, not never.

Could we all say very loudly please? "THIS IS NOT MY FAULT!"

Even if there is evidence that an unhappy and difficult pregnancy can lead to problems afterwards, IT'S STILL NOT YOUR FAULT! Because you did not choose it that way, you did not set out to have an unhappy and difficult pregnancy, there wasn't anything you could do about this. (OK, I'll accept that substance misuse in pregnancy might be your fault, but you haven't indicated that, and even if there was any, I'd be saying to stop beating yourself up over it because that won't help!)

Now, the final mantra for all of you struggling with impossible situations ...

"I AM DOING A GOOD JOB!"

JBD

Hi all, would just like to introduce myself as I just found this thread. I have a 9 year old daughter with autism, she was diagnosed at the age of two and a half. I haven't read through the whole thread yet[ will over the next few days], I would just like to say how terrific it is to find a thread like this, we are the real experts.
I would just like to respond to the parent whose child needed dental treatment, my child had 2 teeth removed last summer under general anaesthetic, she was in hospital as a day patient. She sees the 'special needs dentist ' every 6 months. I believe dental care is often a problem for autistic children, I know she certainly does not like having her teeth cleaned.