Hi everyone

[aspiesrule]

Hi, I am mum to an aspie boy aged 10. We don't have a labelled diagnosis, but he did a test when he was five with a clinical psychologist and he meets ALL the criteria. Her report just stopped short of a label.

 

We had some very tough times early on, but years of hard work and research have paid off and he is now in year 6 mainstream, looking forward to secondary school, and has a few friends. He has worked really hard to get to where he is and I am very proud of him. You can see how hard he is working to maintain his control as when he has a cold, for example, it all crumbles for a few days. You can really see the AS traits come through, then!

 

He is VERY obsessed with Nintendo games, e.g. Mario, Pokemon etc. and spends hours on the computer researching them, as well as the hours playing them. He talks about them a lot to whoever will listen (he doesn't notice whether they are interested or not!) (We have been through Thomas and Thunderbirds in earlier years)

 

He has sensitive taste and a limited range of foods, seems to hear all raised voices as shouting, cries very easily and has trouble with getting started on his school work. He is very bright academically but awkward physically. He is not yet confident on a bike, gets totally confused by team sports, takes things very literally, and misinterprets others motives all the time.

 

Having said all that, he has come a long, long way since starting at pre-school all those years ago. I have read extensively on the subject, and can sort of understand how he feels a lot of the time. We have worked closely with his schools and they have been great (with the exception of a few "old school" teachers who don't want to understand, who I have had to "put straight" on a number of occasions!)

 

The two areas I would appreciate any advice on are toiletting and crying. We have been battling with the toiletting issue for years now and he just doesn't seem to be able to stop what he's doing when he needs to poo. I think he genuinely wants to get it right but claims he doesn't "feel" the signal to go.

 

The crying thing is becoming a problem now he's 10 as we think he will get teased for crying now. It seems to take very little to make him upset, just not liking the look of the work he has to do in class, or someone saying the wrong thing to him in the playground can set him off.

 

Anyway, I would like to offer my advice to anyone based on my experiences and it will be good to just have others to talk to who understand.

[NickyB]

Hello and welcome

 

I have a 5 year old boy with high-functioning Autism and also a 10 year old son, who has no ASD.

I hope you find the forum as helpful as I have, and I'm sure your experience and knowledge will help lots of others.

 

Nicky <'>

[Kathryn]

Welcome to the forum, aspiesrule.

 

It's good to hear of your son's positive experiences at school.

 

K x

[Clare63]

Hi Aspiesrule,

 

Welcome to the forum.

 

Afraid I don't have any advice re toileting, but my lad still crys, I think its his way of lettting his emotions and frustrations out, especially when he can not express himself verbally, I understand your concerns about him getting teased. My son realises this and has tried hard to hold back his tears in front of his peers, this became more and more difficult in secondary school and contributed to his eventually removal.

 

Hope you find some answers here.

 

Clare x x x

[Suze]

Hi welcome <'> , agree with clare, the crying is his way of expressing emotion frustration anger etc.Like some may get agressive, angry, verbal, noisy or stim, your boy is using crying as a way of letting it all out.There have been lots of threads on toileting probs , if you use the search engine you,ll find em , is your boy under a pead for the toileting??.........or on any medication?

[aspiesrule]

Hi again,

 

Thanks to all of you who have made me feel welcome already. My son is not involved with any professionals at the moment, they were involved in the early days but provided nothing useful so we have "gone it alone" (very successfully in most areas)

 

I guess I sort of knew the crying was his way of avoiding a major meltdown, and I would be happy with it apart from the potential for bullying it may bring. He is getting better at controlling it so maybe that will become less of a problem.

 

Thanks for the tip about the fact that there are a lot of threads on toiletting, I'lll have a look through the site today.

 

Good to hear from you all

 

 

p.s. I must be a glutton for punishment as we adopted a little girl of 1yr two years ago with global developmental delay and we now have a whole new set of challenges!

[DMM]

Hi Aspiesrule

I've got to say how shocked i was when i read your post. It was as though you were talking about my son. He's 10 and has major crying issues. Bullying has always been a problem, but as he's getting older the kids are picking up on things a lot more. The school, inc doc, told me he just needed to grow up!! Now everyone has come to the conclussion there is a problem. Not bad considering i've been telling them that since he was 5. We have had no professional involvement until now, and that is a single app with the school doc, who has sent hosp referrals.

We also have the toilet thing, the hearing and taste sensitivities and the obsession with mario and pokemon.

My son has also come on so well after almost 2 years on an INPP program and johannsen sound therapy. He does still have very poor co-ordination but is better than he was. You're so right to be proud of your boys achievements, i'm certainly proud of mine.

Don't know if this will help you, but we've had less toilet problems since we took him off of cows milk!

Debbie

[purplehaze]

Hello, welcome to the site and well done for all the work you have put in over the years. Most families whether with a DX or not get little support and go it alone.

 

I have a 14 yr old son with ASD and he also has a bowel condition which is linked with his anxiety. Are your sons stools loose? Have you seen a pead for toilet issues.

 

My son is extremely sensitive to voices and also thinks raised voices are shouting and it is very hard at times. I haven't heard much info about this-so it's nice to hear it's not just my son. Good luck with everything X

[JsMum]

Hi and a nice warm welcome,

 

I have the opposite for J, he expresses physically, and it gets him in trouble, it is mostly down to not been able to express using words, he gets soo stressed and anxious that all he has left is a body full of adrenalin and so explodes, we have been using a lot anger management techneques and breathing and relaxation techneques to control the emotions, the relaxation cds could be something I would recommend for the similair issue your son is experiencing with his emotions.

 

Your son has a lot of challenges to cope with if he is in a mainstream classroom, he will experience a lot of stress with his sensory difficulties and if he is like Jay who has sensory intregration difficulties it will be very difficult to cope with the constant sensory discomfort of a classroom, my son couldnt work if it was raining because of the noise it made on the roof, he was very sensitive, and stressed.

 

I recommend a book called the out of syncs child and the sister book ther out of syncs child has fun, these have brilliant informormation and ideas.

 

I recommend researching weighted blankets and other sensory and tactile equiptment as this is how we have gained success with J, especially his eating and toileting needs, he is clinically underweigtht and at one point only ate chocolate, wheetabix, but now he has a different menue for each meal, we did it using a sensory aproach.

 

The toileting issues may be down to anxiety, and lack of dietry nutrition, as this will cause fluctuations in constipation to droplets/ and constipation is painful and can cause a lot of mood and behaviour problems, anxiety will close down the digestion and if your son is anxious most of a school day it will be very difficult to manage his bowls.

 

A book I think might help you son is my book full of feelings how to control and react to the size of your emotions.

 

by AMY V JAFFIE MSW and LUCI GARDNER

 

For us we researched a lot of Anxiety information, sensory information and Anger management and it has all really helped though other things have changed too such as a specialist education placement that takes into account his sensory difficulties, small classrooms, work stations that provide minimum distractions, specialist teaching, structure and routines and regular support.

 

It sounds like you have done a lot already, your early knowledge and support has really helped him, crying is also very healthy, so as upsetting as it is to see he is actually in tune with his inner feelings, there certainly not locked in, and causing pent up anger, but I also understand its not good for him to be this destressed all the time, so some ideas are needed, Anxiety and Sensory difficulties are very stressful and be taking up a lot of his energy, on top of what is already required of him in a daily routine of school.

 

Is he any better at weekends, holidays?

 

JsMUM

[aspiesrule]

Hi DMM,

 

It's amazing how alike our boys are - perhaps we should put them in touch through MSN or something! Then they can compare notes on Mario and Pokemon and we might get a break!

 

Sounds as though you have had similar experiences and frustrations with the professionals, I think maybe it forced me to learn a lot for myself from books and the internet which now help me to understand him so maybe that was a good thing?

 

My son does drink two glasses at least of cows milk a day. He only likes milk, water and Tesco Apple juice so I like to give him the milk to make sure he drinks enough and gets enough calcium as his diet is limited. What, if anything, did your son drink instead?

 

He seems to have fairly normal consistency stools although he often constipates himself through holding until a "convenient" time, i.e. when he has finished what he is doing.

 

We are making some progress through having a checklist of things he does when he gets home from school, which he wrote. e.g. 1. take off shoes, 2. go to toilet and try for a poo, 3. get changed, 4. do homework, 5. time for fun. We have been doing this for a couple of weeks now and the accidents are decreasing.

 

Anyway, great to hear from you, would love to hear of any problems/progress your son has.

 

<'>

[JsMum]

e.g. 1. take off shoes, 2. go to toilet and try for a poo, 3. get changed, 4. do homework, 5. time for fun.

 

I use visual routines too, but I wouldnt include the toilet and try for a poo, It uses too much of a focus, and if he fails it will increase his frustrations, I would due to the school day and possible limited daily intake of food and drink replace it with a small drink and a snack, his sugar levels are possibly low and may be dehydrated if he hasnt had enough to drink at school.

 

JsMum

Edited October 12, 2008 by JsMum

[aspiesrule]

Hi JsMum,

 

Thanks for all your recommendations, I'll certainly research those books and maybe add them to my collection. I don't think my son (I'll refer to him as A) has particular difficulty in the classroom setting, he is just "touchy" about things both at school and at home. The three main upsets for him are people saying /doing things he perceives as mean (Whether intended that way or not), something he really hoped would happen not doing so (i.e. disappointment of some kind) and having to do work or homework he thinks he can't do well at (he usually can in the end but I guess its a self confidence thing). These three issues can crop up quite a lot so it seems he is down a lot. He can be very happy in between, though.

 

I do sometimes worry that he may be prone to depression, as some days he says he feels down but can't understand or explain why.

 

 

I think I will stick to his routine for now as we have some progress with it, he knows if he can't go he tries at hourly intervals. We're hoping it might make him a bit more "regular" in his bowel habit then it won't be so much of a problem for him. He wanted to try it this way so I'll persevere. He usually does have a snack as well, usually before the homework.

 

 

Good to hear from you

[JsMum]

The three main upsets for him are people saying /doing things he perceives as mean (Whether intended that way or not), something he really hoped would happen not doing so (i.e. disappointment of some kind) and having to do work or homework he thinks he can't do well at (he usually can in the end but I guess its a self confidence thing).

 

These are the same issues as Jays, on top of his sensory difficulties, Jay has dyslexia too, so has difficulties prossessing information and output, so has major difficulting putting on paper his thoughts and ideas/

 

We have researched disapointment too, its a massive emotional responce, I hadnt realised how big of an issue it was until we actually looked into disapointment, now I let him experience disapointment and can I am slowly dealing with him been disapointed too, took a lot of emotional strength.

 

Again the mean bit maybe down to not reading situations properley or misinturpritting the situation, othertimes others may well be being mean and helping him understand how best to cope with our feelings, many times when people are mean, its to raise there own self esteem, so really its the other person who has an issue.

 

Depressions symptoms can be also in many disguises, it could be that there is other difficulties but he displays his in depression.

 

JsMum

Edited October 12, 2008 by JsMum

[DMM]

Hi,

We stopped the cows milk after the neurotherapist on the inpp suggested he may have an intolerance. We replaced it with rice or soya milk and soya yoghurt and dairy free cheese. The change in him happened within 3 days. Could be coincidence, but i don't think so! He suddenly started asking to go outside on his bike and the energy level went up. we recently had some test done and it is cows milk and chocolate he has problems with.

He does still have the odd problem with not realising he needs the toilet but very rarely. Before he used to be so badly constipated, possibly like you say, through holding on! Now he does go most days.

As far as the crying, he tells me he doesn't always know when someone is being mean or joking. He really gets upset if he hasn't completed a job in class and says he's let his teacher down. Of course there are a few kids who think it's funny to see if they can make him cry, and the more he does, the more they tease.

JsMum seems to know her stuff and i'll also be looking in to some of her recommendations.

Nice to hear from you.

Debbie

[JsMum]

Hi DMM, we did the vaga test and J came out as intolerant to diary products, but worse still he is intolerant to soya too, so we do keep Jay to cows milk, though we do prepare ourselves for the result, we use cravendale milk though, this is filtered, and it seems to suit him better than other diary milk.

 

I have to be careful with Jay not to cut out too many intolerances out because of his lack of diet already, so we do comprimise, Im soo pleased that you noticed a difference with in days for your son, when you went for diary alternatives, we have really tried to persivere with the alternatives but we just cant get him to change, your right about the chocoate too, not only for the diary but for the caffine, so it can be a double wammy for some children.

 

JsMum

[DMM]

Hi JsMum

The test we had showed a ridiculous amount of things that were problems but we were told if it only showed on the list once, it wasn't such a big issue, so we're focusing on the main ones, cows milk and cocoa. Soya came up once as did almost every fruit and veg, inc potatoes. I just don't think it would be practical to cut all this out because diet is an issue with us too. He was no prob with soya or rice milk but couldn't stand goats milk.

The change really was remarkable. He still isn't full of life and still has dark circles under his eyes but hopefully we'll get there in time.

Of course the doc refused to do allergy test and put him on lactulose and laxatives???? Oh well, we'll get there i'm sure..

[Spike P]

Hi, I am new to site and grabbed the toilet and crying thing!! Our son is 10 and has ASD, lots of anxiety, toilet stuf was major issue until about a year ago and we discussed endlessly that he had to do the wipe himself !! Even asked him to wipe our perhaps !!! Once our lad decides seems nothing can stop him and one day he just did it and we heard no more about it although he takes for ever in the loo when he has to go !! Crying still an issue but not like yours.

 

My big huge monsterous issue is school...After huge amounts of effort we have a band B statement for our son and he has 24 hours a week TA help. Where we live in Eastbourne there is no ASD facility attached to mainstream school, nearest is 45 minutes by cab, we want LEA to pay for independant schol...Ha Ha !! Local comps are useless, not enough support. We still have not put preference form in....I have had no end of discussions, meetings, letters, and this will end up in tribunal with us forking out huge sums to represent us...It is a postcode lottery education !!! Aaaargh !!! Enraged from Eastbourne

[Karen A]

Hi, I am new to site and grabbed the toilet and crying thing!! Our son is 10 and has ASD, lots of anxiety, toilet stuf was major issue until about a year ago and we discussed endlessly that he had to do the wipe himself !! Even asked him to wipe our perhaps !!! Once our lad decides seems nothing can stop him and one day he just did it and we heard no more about it although he takes for ever in the loo when he has to go !! Crying still an issue but not like yours.

 

My big huge monsterous issue is school...After huge amounts of effort we have a band B statement for our son and he has 24 hours a week TA help. Where we live in Eastbourne there is no ASD facility attached to mainstream school, nearest is 45 minutes by cab, we want LEA to pay for independant schol...Ha Ha !! Local comps are useless, not enough support. We still have not put preference form in....I have had no end of discussions, meetings, letters, and this will end up in tribunal with us forking out huge sums to represent us...It is a postcode lottery education !!! Aaaargh !!! Enraged from Eastbourne

 

Hi Enraged from Eastbourne [spike] and Welcome to the Forum. Karen.

[Karen A]

Hi aspiesrule Welcome to the Forum.

We have Ben age 10 also year 6.He is also very bright and was Dx AS last Monday.Your post could have been written by me It is so reasuring to have company.Karen.

[aspiesrule]

Hi aspiesrule Welcome to the Forum.

We have Ben age 10 also year 6.He is also very bright and was Dx AS last Monday.Your post could have been written by me It is so reasuring to have company.Karen.

 

 

Hi Karen,

 

Thanks for the welcome. I have been wondering whether I need to try and get a proper diagnosis for Andrew as he is doing so well at the moment and I'm not sure what benefits it will have. On the other hand, if secondary school gets too much and we want a statement to get him extra help we could get stuck with loads of delays - what do others think? Also as we haven't been that involved with the professionals for a while I'm not sure how to go about it anyway. He has coped remarkably well at infant / junior school, (well, on the surface anyway, who knows how hard it is for him inside, he has trouble identifying and verbalising his feelings) but he seems happy a lot of the time, when he's not saying he's down but he doesn't know why.

 

Does anyone know whether I need an actual Dx and statement to maybe get him more time for exams etc. as he has trouble getting his thoughts together and getting started. This hasn't been an issue before but as the work gets more complex and the exams more important, I think he should get allowances made.

 

Anyway, its been great getting all the feedback and hearing from all those of you in the same position - I think we do tend to isolate ourselves a bit too much and think no-one else knows what its like.

 

Cheryl (aspiesrule)

[DMM]

Hi Cheryl,

Although the doc has set the ball rolling for getting us a diagnosis, she's not sure if he'll "tick all the boxes", so i'm wondering if we'll still be able to get any additional help. My boy's quiet and doesn't make a fuss, (other than the crying) so he tends to get passed by and noone seems to think he needs extra help as he copes well with the work. That's ok now, but what about when they go to secondary and have exams?

The doc says aspergers isn't an issue as he has speech problems and has referred him for a hearing test to rule out the glue ear he had when he was younger. Test is next week so we'll see.

Greg likes to know in advance exactly what is happening. A few weeks ago we had a teacher training day on Mon, back to school Tues and then on Wed the school was off due to staff strikes. Well, i apparently hadn't made that clear and he got very upset cos he didn't know what was happening! I'll be extra carefull in the future.

It does help to realise that you're not the only one going through these things. Obviously a lot of people in the same boat so i'm not just an overprotective,paranoid mother as some people at school seem to think.

Debbie

[cmuir]

The crying thing is becoming a problem now he's 10 as we think he will get teased for crying now. It seems to take very little to make him upset, just not liking the look of the work he has to do in class, or someone saying the wrong thing to him in the playground can set him off.

 

 

Hi

 

Welcome!

 

A specialist who saw my son said something interesting which makes a lot of sense. He has AS and is nearly 7 and tends to either cry or become very angry in situations which evoke various emotions, but ones that he can't recognise or cope with. For example, in PE he apparently accidentally bumped into another child. He just stood there for a few moments and became very emotional and sobbed uncontrollably. The only advice I've been given is to label his feelings for him and keep reinforcing it. I'm unsure whether this is good advice or not, because I wonder whether he'll ever learn to recognise and deal with various emotions, but it's worth a try!

 

Best wishes.

 

Caroline.

[aspiesrule]

Hi

 

Welcome!

 

A specialist who saw my son said something interesting which makes a lot of sense. He has AS and is nearly 7 and tends to either cry or become very angry in situations which evoke various emotions, but ones that he can't recognise or cope with. For example, in PE he apparently accidentally bumped into another child. He just stood there for a few moments and became very emotional and sobbed uncontrollably. The only advice I've been given is to label his feelings for him and keep reinforcing it. I'm unsure whether this is good advice or not, because I wonder whether he'll ever learn to recognise and deal with various emotions, but it's worth a try!

 

Best wishes.

 

Caroline.

 

 

Hi Caroline,

 

I think any advice is worth a try, but as you say, recognition of their emotions is not their strong point! A does realise now that there are levels of feelings, and we try to categorize things into serious, ok to cry, or trivial, try and hold back, and he seems to be making some progress. For example, bereavement, pain, OK to cry, name calling, work too hard, try and hold back and accept as part of life. I guess this is similar to what you said.

 

I am also trying to give him a list of responses to the name calling or teasing bullies, so that he doesn't get angry. He knows the quickest way to make them stop is to ignore them, but that is easier said than done for him. But we ARE getting there, it is just very slow, and some days are better than others. I just wish other people realised how hard it is for our kids to manage their emotions and get through each day "pretending" to be "normal"

 

Anyway, take care, and thanks for the input

 

Cheryl

[pookie170]

Hey Cheryl,

my Cal is an 11 year old aspie and from what you've said, our boys are very, very alike. Mario is an invisible, honorary family member here (along with flimmin' Spongebob!!!) and my ears are ringing with facts and figures about him!!

Hope you find this forum as useful and supportive as I have, nice to have met you,

 

Esther x