Aspergers/ASD support thread

Sue-UU

Snaggles wrote: »

Awww SDW, I think it's lovely! Of course, there will be lots of concerns, and yes, it could all go horribly wrong, but if we didn't take risks every now and again, life would be a bit dull. All you can do is support him, be happy for him, and be there if he needs you. And she does sound soooo perfect for him. I will be sending you all the positive vibes I can possibly muster.

Hi seven-day-weekend. Snaggles words fit my thoughts for them beautifully, it is so lovely for them to have found each other and they sound perfectly matched so why not take the risks and aim for a life of togetherness and love. They're owed that much the same as the rest of us!

Love and many prayers for them and for you!

Sue.

justontime

seven-day-weekend wrote: »

she inspires him to look after her, so that is good for him, and she makes him wear a coat and eat his broccoli!

I hope my son finds a girlfriend one day, we have constant battles about wearing a coat, eating normally and all the usual stuff!

My son (13) has gone on a ski trip to Austria. It is so strange without him, but I need this week to recover from the extreme stress of packing for him last week.

The day before he left I took him out to buy the ingredients for his packed meals (it was a 24hr journey). He is surprisingly rigid in his ideas about packed food, if it should be hot he will not eat it cold, so that rules out sausage, sausage rolls and all sorts of other things. He likes BLT sandwiches, but not unless they are very cold, the same goes for yoghurt, and similar things so we can't pack anything like that. In the end he bought a couple of cereal bars, some wholemeal snacks, some fruit and a jelly. According to him the only thing that will stay at it's optimum temperature on the coach is honey, but he can't bear to eat it in sandwiches, so I had to pop out and get him a mini pot of honey and some Rivita and he had to take a plastic knife and do it himself! I don't suppose he starved, so having tried my best I decided not to worry about it.

He was allowed to take a rucksack and a small pillow as hand luggage and the rucksack needed to contain his packed food. He had packed his own bag and it was already bursting at the seems before I had even attempted to pack his food. I had to investigate but when I attempted to move the bag I could hardly lift it. I removed assorted unnecessary 'essentials' but I was speechless when I found that he had packed his safe complete with combination lock! I managed to open the safe to reveal to pens, a lip moisturiser stick and a selection of sweets. Much to his disgust the safe was 'grounded' but he took most of the contents. He and I conducted a bit of a war of attrition regarding the packing, I packed, he re-packed, I put it back as I left it and he modified it again. This continued several more times, the main argument involved a 4 gang extension lead, three jars of honey and a years supply of Lynx toiletries that he was determined to take!

I have had one brief text to say that he is too hot and has no broken limbs - yet! He is having to wear a ski jacket and he never ever wears a coat, so that is why he is too hot. It took ages to find ski clothes that 'felt right' but I expected him to find wearing a coat challenging. I don't expect him to achieve much in terms of skiing but I hope it will be an interesting experience for him. I am making the most of his absence to try to bring some order to his room, he is such a hoarder.

Sue-UU

That was so lovely to read through, justontime. I read a lot about a very determined yet somewhat stubborn young man....and such a great deal about a loving, caring and devoted Mum who adores her Son. It made me giggle at the 'sight' of you both! His SAFE!!:eek:

I hope he has a wonderful time and that you get the time you deserve to relax, to hopefully pamper yourself a little too.....after you've got his room sorted! I really do hope that he can find a girlfriend too, when the time is right, no doubt she'll have more success with him wearing coats and eating.....but then we're only Mums!:)

Best wishes, Sue.

Savvy_Sue

Oh dear, happy memories of DS1 going on ski trips ... Fortunately he is not too bad, so it wasn't as bad as that, plus he's less 'attached' to things. I always used to warn the teacher in charge of school trips that there really was NO mileage in trying to get him to go to discos, he would be completely miserable at such things ...

However, one tip which might help in future, is that their uncle bought both the older boys 'lunch bags as bum bags'. I'm not sure I can find a better way to describe them, but they were very useful for long coach journeys. Insulated bag on a waist strap, several different compartments formed by dividers with velcro ends. Two advantages: one was that cold food could be kept cold, and the other that they could put it round their waist rather than attempting to get it into the bulging rucksack!

blue_monkey_2

Hi everyone,

I loved the story of your son JOT and I also had a little giggle when I read that you son had his safe in his rucksack. Just the sight of you trying to lift it in my head. It is nice to get an insight into what our kids will be like in the future I guess but I can imagine it must be hard for him not being there for you to worry over. I hope you are finding some time to yourself for once.

For me, well we have had a court date. The council will still do diddly squat as there is 'nothing suitable' so I have my meeting with my MP on Saturday to find out what is going on and if he can help more. It is not like I have asked to stay in this srea, I have asked for anything in the district and I refuse to beleive that nothing has come up in the last 4 months at all. i find their attitude shocking in all honesty, shocked that they are dragging it out so we will owe the courts money as well.

Yesterday polling cards came through the door and DH has pointed out how good it will look if the MP cannot help us when he has sent a leafet out stating that he has a special interest in special needs education and also families - how good will it look in the paper if he can do neither!! So hey ho, nothing ventured and all that. DH said he did not want to be in the paper but I said if that is what it takes then we will have to do it. I am not going down without making a fuss and screaming as loud as I can, LOL!!

I saw 2 magpies in the garden yesterday morning, not seen them before, nor since so maybe that is an omen!!

Also, some very good news to share, Ryan has been insiting again that he goes swimming so I arranged to go with a friend and her little girl this time. I got there and took Ryan in the water and again he was crying and asking to get out, he was screaming saying he was scared, so after 15 minutes he was so upset I got him out. Then as my friend was there I sat on the side for 10-15 minutes and he refused to get in again. I thought that it would have been easy to go home. But, as she was there I thought 'sod it' and got back in with him, another 10 mintues of crying and screaming and ignoring everyone who was speaking to him but by the time we got out 20 minutes later he was standing on the side and leaping in. I don't actually remember how it gtom from crying to jumping in. It is all a bit of a blur of happiness but everyone was telling him how clever he was, even strangers. So now we are making it a once a week thing, it is the only time the pool is open in the day, and fingers crossed he will get used to it and start to love swimming.

I went to see the school yesterday and they have told me that from how he was in November to how he is now is an amazing improvement. he is still not cpmlient in everything and if they ask him to draw something he will alsways draw a hamster cage (he is obsessed with rotastack hamster cages with the tubes going all over!!) I asked her if he was better because they have learned better how to deal with him, and she did admit that she was not sure. I have asked about getting a statement for him but they have talked me out of it until September to see how he is when he goes ft. For now he goes to school OK and he behaves and does not hurt the other kids. In September he goes full time so he might need it then. I know that if he needs special help the school will give it to me at that time, if he needs it he will get it without my intervening and asking, if I ask he will get it too (I guess this means I am very lucky! And this is why I want to keep him at this school) but if he does need it at that time I will apply for the statement as well as I will have this as back up.

Ryan has little jobs he is given such as helping put out the milk and jobs with the teacher, when it is tidy up time they make sure he is on the PC or having his snack otherwise he has a tantrum and refuses to tidy up. these things won;t happen when he is full time and has to learn and so this is why i have concerns, but they are dealing with him for today and now and I have so much giong on I really do not need the stress trying to get him statemented will bring me. So I decided, housing to be sorted first, school will be done as by September we should be sorted housing wise to know what is happening next and then i can get onto the school. Does that sound OK to you? Does that make me a bad mum? If you could see how good the school is for him you would understand why I have no concerns today - they do seem exceptional if I am honest.

The teacher has said that his eye contact is better and I have noticed this too, but I have noticed that people he is unsure about then when he talks to them he will talk 'around them' so glance up and then around and away while talking. Is this what AS kids do? Do they not give any eye contact at all, even to us? I make sure that when I speak to him I make an effort to get to his level and try and speak with him looking at me. maybe this is because I know I have to try though. If that makes sense.

So that is all from me really. I hope everyone else is well. I feel surprisingly chipper considering, feels funny getting the court date and I was nervous when we got the envelope but it feels like this dreadful mess will soon be at an end and we have 2-3 months here, 3 months at the most. It feels like a relief I have called the court and an 'appearing' by letter as it is half term and I can't get someone to look after Ryan, let alone both my kids!! And DD started swimming classes so she is happy to have that bit of time away from Ryan, I want to get to a point where I can take both of them but for DD to be a good enough swimmer to entertain herslef while I have to keep hold of Ryan. Does not seem too far away now though. Fingers crossed!!

So everything is kind of good so no complaints, of course it is not perfect but then whose life is.

PS. I *think* DD her her picture on a website of the dance shcool she used to go to (before this sorry moving mess started) http://www.starlightstars.co.uk/home.htm it is the one labelled 'twinkling stars'. Now it looks a bit blurry but I am sure it is her, LOL. She will be so excited tonight. Trying to find out if I can get her into a class week for week of they have spaces as who knows where we are going to end up at this rate!!

justontime

blue_monkey, I remember the hamster cage phase! In our case it progressed to a desire to breed the hamsters so watch out.

My son was much the same about swimming, it took a very long time and a lot of support and encouragement, but he can swim and he now enjoys the water. In fact it is about the only sport that he is any good at so I am really pleased that we didn't give up.

He still doesn't like to give eye contact but he has a strategy of looking past people so it is not so obvious. He hates being looked at and he gets really paranoid. It helps if people sit or stand at the side of him when talking to him rather than directly in front of him because he doesn't feel so 'looked at'. He still mirrors speech, so people often think he has understood when he hasn't, but often teachers don't take the time to get him to repeat the information in his own words, then they get cross when he does the wrong thing. I think that many teachers assume they know about AS but they don't take into account the individual child's traits. Every person is different and they need to be treated as an individual. It sounds as if you are giving your son a very good start and he has the added advantage of an early diagnosis so hopefully he will get the help he needs to adjust to the changes at school.

I hope you get some good news re the housing situation soon.

LilySue

I just wanted to say Hi, and that this is a great thread. My youngest son has high functioning autism, he is ten and in mainstream school. He has a statement, and three days a week his class gets a teaching assistant assigned who is there because of Hamish's funding.

My middle son also has problems, we took him to see Hamish's consultant who thinks he has ADHD and dyspraxia, but his problems are relatively mild and she and his school do not think a statment would be appropriate for him. Funnily enough middle son, whose name is Tim, is the one were are having the most concerns about at the moment. He is very anxious and has a charming but demanding personality, hates high school ( although academically is doing very well there) and we are just not sure how to help him best at the moment. The consultant we took him to see said that she thought getting him clinically investigated would only shatter his very fragile self-esteem, I do see her point, but living with an anxious child who swings between depression and being almost "high" several times a day, is not easy.

Have to go now as the boys want their turn on the computer, and I have spent the last three days reading this thread on and off!

Savvy_Sue

Welcome LilySue, it's never easy knowing what to do for the best!

LilySue

Thank you for your welcome, today was actually a lot better, Tim wasn't in a terrible state when he came home from school, so I'm calling it a good day:D

Having read most of this thread, will tell you a bit about our youngest who has the official diagnosis of " high functioning autistic spectrum disorder". I guess Hamish fitted into the speedy but difficult birth category, but we really didn't notice anything amiss until around two years old when his speech seemed to go backwards rather than forwards and his obsessive love of Thomas the tank engine surfaced. He was and is a very affectionate child and that didn't fit in with what I had read about autism so I wasn't that concerned, I figured that he had two older brothers who both talked early and I was unfairly comparing him.
But quickly playgroup age came along and I hadn't tried to potty train him as he didn't seem to understand what I said, my health visitor said he was a lovely friendly boy so not to worry.........but he failed two hearing tests and a community doctor told me that she thought he was autistic. Hamish was nearly three then and I didn't believe her, but agreed to be referred to a consultant paediatrician. We went back and forwards to the paediatrician for eighteen months, and finally he was diagnosed when he was four and a half. I was shocked and very low for a couple of weeks, but my husband was amazing, pointing out that this was still the child we loved but now we had a label to help him with
I went to the local school and told them I refused to send him until he had a statement, I knew nothing about the process then, but what I said seemed to work and his statement came through pretty quickly. It was a great school and they gave him a one to one assistant who he bonded with almost instantly. He had two happy years there, but our landlord sold our house ( very complicated my landlord was my mother = lots of stress)...so we eventually got a shared ownership house over the other side of town and moved Hamish's school. That was a very difficult year for him and us, the new school was not experienced with autistic children and frankly his teacher seemed to dislike him. I was on the verge of taking him out and educating him at home, but decided to give the new teacher in the next year a chance, and I am very glad I did...this guy was amazing, after the first dreadful half term when I was in and out all the time, he turned round and said he was sorry for making our lives so difficult and that he realised he had been trying to force Hamish to fit in and it wasn't working, he tried a much gentler approach and suddenly Hamish began to blossom :T
Now Hamish is ten years old and in the second year of middle school. He made the transition to middle school without batting an eyelid, it is so true that often the changes you thing will be traumatic are no bother at all! Since he was seven he has been on the gluten free/casein free diet and this helped him a lot as before that he was very thin and had a lot of bowel trouble....now he eats a wider range of foods and has grown a lot physically, plus it seems to have had a positive effect on his behaviour.
If you've read all of this, well done as I can definitely ramble. One of the nicest things about Hamish growing up is that he can now explain to me some of how he felt when he was younger. He told me recently " I didn't understand words when I was little," and " I didn't know what you meant," and I honestly can see how he struggled and struggled to make sense of our very odd world as a young child, no wonder he as so frustrated at times.

justontime

As I have said before my son (13) has a diagnosis of high functioning ASD and dyspraxia. We have huge problems with his hoarding and judging by what I have found in his room this week he is getting worse. He tends to put things in containers and then the container will be in seven or eight other layers/containers so it is really hard to keep track of everything. I am not talking about stuff relating to his 'mastermind subjects' he collects really random stuff that anyone else would treat as rubbish. He hates having his room and his things interfered with and I try to strike a happy medium between respecting his privacy and avoiding a health hazard! Really his room is a full time job, he can reduce it to total chaos overnight. Does anyone else have these kind of problems? How do you cope? I have other teenage children (19 and 16) and step children so I am familiar with the usual anarchy of a teenager's bedroom, but this is on a completely different scale. It really worries me, in fact it makes me feel quite ashamed because it is so hard to cope with it.