Very emotional boy, sorry its me again...

[BekkiKay]

Its my ds1 again. To give you the background - I've always been slightly worried about his behaviour, even from birth.
He has always been very 'difficult', incredibly stubborn, boisterious and highly strung.
For example he'll ask for a choc bar, I'll say no you've just had one. He'll then screw his face up, cry real tears, scream, kick and shout 'I hate you' for about an hour. Its the length of time that he carries things on for that bothers me really.
He is 3 and a half and has about 10 full on tantrums a day.
He gets so upset about the tiniest things and is quite obsessive in his behaviour.
Today a friend at playgroup said that he hated my ds and then he screamed at him not to say 'hate' and then bit him on his arm. It was hard enough to leave a bite mark. I'm mortified by his behaviour and to be honest this is the last straw, I'm thinking that there might be something not quite right about his extreme reactions to everyday situations.
Can anyone offer any help, I'm very worried about him.

I won't get technical here- but assuming my ds2 is eventually diagnosed then i will have
1 who has no eyecontact- the other excessive eye contact.
1 who likes to be near people and 1 who cannot tolerate anyone too close
1 who can spend hours drawing/writing and 1 who cannot concentrate on anything but playstation
1 who is 'flexible' and 1 who 'sees in black and white'

JIMJAMS,DAVROS and MARYZ are better at writing the 'proper' descriptions of Autism....but i promise you that having 2 'different' types in one family is 'enlightning' as people are always saying DS1 cant have Aspergers as he doesn't 'look' autistic.....yet as soon as i say ds2 is probably 'more' autistic than aspergers(IYSWIM!!!) they suddenly compare him to DS! (who then suddenly becomes 'autistic' and they say ds2 can't be autistic as he's not like ds1!!!!!

Since when did ANY 2 human beings have to be the same....so why is there this sterotypical imaage in everyone's head!!!!

So you have a little boy with ADHD and another with autism, msforgetful?
What kind of medication do your boys need to take?
How does this affect you day to day?
Sorry so many questions.
Oh, do autistic children tend to be slower to count/read or are they just more difficult to teach iyswim.

Not different types but different degrees. However I do think you are a long way from an autism diagnosis. A lot of children can be very emotional.

Would he have passed the CHAT test at 18 months. That's the best check for such a young child. The pointing, following a point and pretend play is bits that need to be present by 18 months to pass.

Again though- I do think you are a long way from having to worry about autism. Let the people in but do expect to speak to them. Your son may just be highly strung. But if he gets extra help at nursery then that will help and is a good thing. Do expect to be kept well informed though.

Posts crossing.
Well ds1 is so uncooperative that he would have failed all of them. He failed his hearing test 3 times.
But if thats a true representation of the problems that autistic children have then no ds1 is not autistic.
He is highly imaginative and interactive. Hes a live wire.

In section A 5-9 are the important questions (the others are kind of red herrings) and seciton B is important. Ds1 would pass the chat test now (at 4 and a half),and would have passed it on a good day at just over 2, but not at 18 months.

Anpother test that can be used is the CARS test (childhood autism rating scale) I have a copy of it at home - but it is much longer. If you were worried you could ring me if you wanted.

I don't know if you are thinking autism though. Nothing you have said has made my alarms go off.

I've confused you !!!! Ds1 is 10 and was dx with ADHD at 7 and Asperger's (aut) at 9.
DS2 is 7 and when i completed the 'final' diagnosis 'questionaires' for DS1's Aspergers dx i had tears in my eyes because it all applied to DS2 MORE than DS1 (unfortunately i am having alot of probs convincing ANYONE of this now!!!)

DS1 has had Methylphenidate (form of ritalin) since 7- and it definitely helps him- he asks for it sometimes at the weekends when i forget to give him it- but the trouble is noone told me at age 7 he could still have aspergers- but 'demonstrate' ADHD behaviour due to the frustrations he had in 'fitting in'- i just thought that was that.Full Stop!
He has for almost a year been taking Melatonin (bodyclock hormone) for his sleep- its fantastic- he now is asleep by 9.30- b4 he was awake and had to be supervised till about 1am

My ds2 remids me of your sone-from looking at your earlier posts- so in a nutshell i would say that he is demanding- but i do know where i am with him as he likes routines- he hates it if people change their minds- he likes to be first at everything-hates eating new foods- so over the years his diet has got more restricted- but thankfully due to an excellent book'Cant eat,wont eat'- we 'can' now gradually widen his food selection!Likes to be tightly snuggled up in bed in his 'snugglesack' hates cuddles- i'll finish now but feel free to read some of my previos posts as i'm concious that i'm repeating myself! Contact me privately by all means!

Thanks for all of your help.
Thinking about it Jim Jams I remember when he was 18 months and I noted that he was due for a development check that involved the tower block exercise. I dreaded it because I knew that he couldn't do it. No one contacted me about the check and so I forgot about it. He can point but I don't remember him doing this when he was little. All he ever did was walk. Odd I know but he just screamed until he could finally at 8 months walk around. Thats pretty much all he did until he was 2. He wouldn't sit and play,just ran around.
Anyway thanks for lisening to me, I feel alot better now I've had a little melodramatic cry. Thank you.

Bekki if you ever want to chat- contact me via mumsnet with your number and I'll ring you.

Good luck with the pre-school person. if she;s like my son's she'll be incredibly wet Do ask to talk to her afterwards though- I'm sure she'll be happy to- that is standard practice.

Sorry. I've only just caught up with this thread again. My ds1 is 3.7yrs old and is autistic. He's a friendly little boy but very much likes his own space. He can sometimes tolerate playing alongside other children but much prefers his own company.

He learned to recognise numbers, letters etc very early on as he tends to be a very strong visual learner. He can read but if someone wanted him to read he almost certainly wouldn't do it. He is a very fast learner once he has grasped the concept of what you are trying to teach him, but it can be a battle to find the right way to get through to him IYSWIM. His Paediatrician's view is that he will be very easy to teach but that it's just a case of finding a method which will suit him. In some areas he is a long way behind other children of his own age. In other areas he has been described as a mini-genius. The lack of consistency is what makes it so difficult to deal with him sometimes.

Our local Early Years Service (the people who go into the pre-schools to observe etc) has been brilliant. They managed to spot in one hour several things which I hadn't really paid much attention to.

Ds1 has an IEP too. This is regularly reviewed as he seems to go through sudden 'spurts' where he makes a huge amount of progress. Other times he just plods along doing his own thing.

Sorry this post has turned out so long. I'd be happy to help if I can.

BTW Bekki I don't think you were being melodramatic at all. Its horrible being told that your child may have a problem, even if you've suspected it for a while.

I still cry after assessments, and usually spend about a week fed up after a really big one.

I've kept him off p/g today I just want to stay and cuddle with him and keep him away from 'worried' people.
I still haven't fully accepted that there is a problem. Odd I know since I was the one who started this thread worrying. But I guess I wanted someone to say 'no, hes fine'.
I'm very tearful about it all.
On the upside I have made a break through in communicating with him. I have been reading 'How To Talk So kids will listen and listen so kids will talk'. It has made a big difference in our everyday conflicts. But still it can't sort out the underlying problem.
I'm sorry if some of the wording I use upsets some people but I'm obviously new to this and I'm sure I'll get the hang of it.
Thank you for all of the support. I will be sure to contact you all if I need to after his check on Wednesday. I think I'll need all the support I can get at 3pm tomorrow.

No it was own view Jimjams, I'm usually much stronger than this. I think its the fact that no one else recognises that there might be a problem. I'm going into this all on my own.
But I'm sure as someone said that there will be a grieving process.

Bekki - sorry I hadn't seen this thread before.

Big hugs and much sympathy. It is a very difficult time but please don't get too cast down about it. My DS1 had lots of behaviour problems at his first nursery and was on the brink of being chucked out. This time last year we were going through the evaluation process, and in March last year we got his diagnosis of high-functioning autism. However, on the positive side, with the help of another very good nursery, an IEP, and various strategies we've learned and put into place at home, he has made really good progress and is actually in mainstream REception now and has had no violent incidents for nearly a month. I am a bit pushed for time at the moment but I will read this thread properly later and post another message to you when I get the chance. Just wanted to say, thinking of you, you are not alone.

Bekki- there may well be nothing wrong, so don't assume there is yet. A lot of children are observed at nursery- and for many it goes no further- it's just part of the system being a little better at picking up children who may have a problem.

If you do think there may be something wrong and no-one else does- then yes I've been there as well. I first began to worry about ds1 at 17 months. I spoke to my Mum and my best friend (who had been a nanny and is always up front and straight) and both said I was mistaken. It niggled away for a while, the evil nursery (awful place) suggested there may be a problem when he was 22 months, so I referred him onto SALT via my HV. Then when he was 2 and a bit we started special diets. At about 2 and a half my friend finally agreed there was a problem (and she said she always thought there wasn't before, but she could see what I meant then). DH accepted there were problems a little after that. My mum took it on board after as he was going to diagnosis (and is very good now) and my MIL still can't accpet there is a problem (despite him being 4 and unable to speak!)

I still want someone to tell me he'll be fine

HOwever and a BIG however, being observed at nursery is fairly common these days. It does NOT mean there are long lasting difficulties, so don't assume the worst. Try to relax (easy said I know) and remind yourself that if there are concerns that he has started to see the people he needs to see (that's often the hardest bit- getting the ball rolling). And so if you do have concerns they will be addressed and you won't need to carry round that gnawing feeling anymore.

In the meatime why not read up on stuff? It always helps to be one step ahead. Have a browse for "symptoms" and sensory integration disorder/dyspraxia/autism/aspergers/ADD/developmental delay. Add things like toddler or young child. Not saying I think that your son has any of those conditions- but that is what they will be looking for, so you will begin to understand why they are asking certain questions (and it means that if your son usually does something but hasn't performed on the day then you will be able to give them a useful answer).

Good luck tomorrow- will be thinking of you- i know how you feel to be the only one dealing with this without the support of others- i swing from feeling strong and coping as i do now....to despair. The only thing that keeps me going through the bad days is knowing that the strong days WILL follow.

Today i attended a parent's meeting and the speaker was a Occupational therapist- and it was FANTASTIC! She talked all about sensory issues/dyspraxia as well as aspergers- and I came away having learnt alot. It struck me that OT is something i CAN do for my boys- and isn't just about the obvious things such as tying shoelaces or eating. As i came out one of the parents introduced me to the Head of the Autism Unit the meeting was held at- and she HUGGED me!!!! I had a 5 minute chat about how ds1 had been 'observed' by them at school in his 'best' subjects and she has agreed to arrange with the school several short visits to see him in the areas i have to specify by letter!

The reason i mention all this here is to illustrate to you how in the middle of chaos there is a spark- and the spark grows until it glows....and you suddenly realise that there is a way forward....then you go down again and you cry and then another spark......and each time you feel stronger and you move forwards slowly.

(remind me of this the next time i post when i am down ...)

Thank you msforgetful. That was a lovely message.
I have been looking through a few typical symptoms (?) of autism. Head banging, not going towards parents when they are upset and not anticipating danger are the three that strike me as being issues that ds1 faces.
I think my issues with a diagnoses is my stupid fear of what people will think of us. My mum has made it clear that she doesn't believe in learning difficulties or associated problems with children. She blames the parents. My dh is fiercly protective of ds1 and he would become very angry if anyone suggested anything might be wrong. He blames me for pushing the issue. I think he secretly thinks its my fault that hes so difficult.
Oh god I hate this waiting, I hate talking about my sons problems to strangers because no one in my family wants to know.
I've written a letter to my hv so I don't have to talk about him too much whilst hes in the same room, how awful would that be? I hope I haven't forgotten anything. I don't have alot of faith in a health professional who listens to a mum and then says "so what do you want me to about it" with nervous laughter, but you can't pick 'em.

I'm glad you have written that letter- that's exactly what i'm doing at the moment- one to give the school and another to hand to the Family Therapy Specialist on the 23rd- i always do these letters- and another great idea someone suggested on here is to print of some of your posts on mumsnet- you'll find they will clearly describe the 'behaviours' as well as your emotion- and because they are written at the time of a particular incident you will find they will be invaluable at demonstrating things which may not happen in front of a professional- someone also suggestsed having a file with it all in - with a picture of the child on the front- so that if you attend without the child then a) you can keep glancing at the photo to remind you it's all worth it- and 2) reminds the proffesionals that this is a REAL child being talked about!

Like JimJams said - he may not have 'anything wrong' at all- you may look back in years to come and see this as all in the distant past- but 'if' there are issues it is better to begin now- and as far as 'convincing' the friends/family...I have finally stopped caring- I parent ds1 and 2 as if they are both Aspergers - and it works- ds3 can be parented 'normal' (whatever THAT is!!!?) However he 'likes' to be involved in all the strategies i use- and he is doing great at school- so i try not to 'package' him into the 'Autism' label too! Therefore- if family etc don't believe me and ignore my suggestions and carry on as if they are both 'normal' then i ignore them when they 'complain' about behaviours resulting from 'triggers' that i warned them about!

GOOD LUCK! XXX

oh it is awful talking about them when they are in the room. DS1 was meant to attend his first big case conference (10 adults squashed into a room talking about him). Luckily he caught chickenpox- I was really pleased with the timing.

Your mum is mad! Must be my parenting that means that ds1 is unable to speak at 4. Honestly! Tell her to stop reading The Times and Daily Mail (they have an agenda) and wake up! Mind you some family memebers will never get it- but they're the ones that lose out.

Again don't worry yet though- the things you've picked out - whilst they tend to be found in autistic kids are not particularly diagnostic f autism. Things like not pointing, or not showing parents things of interest are far stronger indicators.

good luck tomorow!

Bekki - Good luck for tomorrow. I'll be thinking of you at 3pm.

I think a lot of dads find it hard to deal with the idea that their child maight be 'different'. I know dh wasn't keen on even talking about the possibility of autism etc. It turned out that when ds1 was diagnosed, dh also got an unofficial diagnosis of AS/autism for himself. There aren't many 35yr olds who get diagnosed by a Paediatrician! (sorry, dh, if you're sneakily reading this. I've just given away your age! )

My family still think that ds1 can't be autistic because he is such a friendly little boy who loves to be hugged and kissed. They may accept it eventually though. I'm planning to give them some reading material on the subject and introduce it to them that way.

Best of luck for tomorrow. Let us know how it goes. xxx

lots of luck for tomorrow Bekki - let us know how things go

Bekki, wishing you luck for today. You ARE doing the right thing. MrsF's posts here are wonderful, keep what she (and everyone else) has said in mind. Husbands often find it difficult, especially as more ASD/AS kids are BOYS so I think they feel the loss more (sorry if that sounds sexist). IME it is also very common for family to be the worst people in terms of support and understanding. I thinks its extremely rare, particularly for grandparents, to understand and then offer support either emotionally or practically. Even with a young baby, I still feel that my 8 year old ASD son needs me more than she does, she can manage with MrsF's "normal" parenting, whatever that is as she says

Hope i'm not breaking any copyright laws here- but just wanted to post this as I read it for the first time the other day and I think it really illustrates how we feel about our children- I have pasted it with the publishing/authors rights- but hope they will forgive me as i believe none of you will reproduce it for profit! (WILL YOU !!! !!!!)

Welcome To Holland

by
Emily Perl Kingsley (following the birth of her son who has Down Syndrome.)

c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

what a wonderful anaology..
Mrs forgetful - I think you are fantastic and would love you as my friend...The first post I read from you was when you were having a bad day and had gone down the school with wet hair....I think you cope fantastically with your boys, they are so lucky to have you. I always read your posts - I may not respond but that's because I can add nothing of help to them...

Good Luck Bekki for this afternoon

Yes msforgetful that has helped me to view this in a different way. Thanks for thinking of us today, its making me cry again.
Well it went as well as could be expected. The HV still had this look on her face as if to say "well what do you want me to do about it" but we got around that eventually.
It was obvious that she had preconceived ideas on our situation which didn't help matters. But neither did ds1 bounding down the stairs and smiling at her. Kids, absolutely unreal aren't they!
Anyway she didn't seem convinced that there was anything wrong until she went to leave and invited ds1 to a party at a sure start meeting. When I told her that there was no possibility that I could go unless I brought 3 other people to help me with ds1 then she took notice. Then we started all over again. She asked me what he does in a tantrum and average day, night and how I reacted. I tried to answer truthfully without makingmyself like a tyrant or a wimp, but she thought I was too leanient with him.
She advised me to put him in a room by himself and not to give him a reason for his punishment. As if I'm going to leave an angry 3 year old in my living room! The place would be turned upside down.
She told me that if I ignored his head banging then he would stop it. He wouldn't he would carry on and find a harder surface btw.
Anyway shes going to speak to the person in charge at playgroup and then refer him to an EP.
So I feel a little bit better now thats done.
Thank you so much for this support its kept me sane for the last few days.