Aspergers/Autism/Sensory Integration Chatter #3

Having a rough time at the moment. J basically will not eat dinner EVER. Every night he carries on and cries and it usually end in a tantrum. He claims that he does not like whatever I prepare. He eats fine at Childcare and if in the care of others without us. I just can't deal with it any more..been in tears since. J actually said sorry. He understands that he has upset me and wanted to make me happy. I hate that he had too see me upset. It has been 2.
years today since my cousin (raised like my sister) lost her little boy full term. So it has been a very emotional day.
I also feel like EI is not doing anything. They visited J at chilcare last week and I still have had no feedback on how that went. I feel judged as a parent. I feel like I have failed J. I feel like because i had post natal anxiety and depression with J that it is my fault. I feel like J is feeding off my anxiety. I am stressed at every meal time. I feel sick in certain social settings wondering if J will do something wrong.
Ok enough for tonight..

Oh honey, huge hugs to you. I know those feelings as do all of us on here.
I have learnt not to fight the dinner thing, sounds slack but it works for my stress levels, DS ate a bowl of cooked rice last night, 6 Mcnuggets and fries the night before- not going to win me any mother of the year awards but hey we were both still happy afterwards. I have also learnt to pick up on signs at social events and leave early if need be, I also pick my events- if I feel it will be too much for him or there are children there who I know will push his buttons until he snaps we don't go simple as that. Christy and I have had some awesome times together because we said with each other we just don't care what our kids do and lo and behold they were angels!!
Haven't got time to type more but will be back. The main thing to remember is :
THIS IS NOT YOUR FAULT!!

Hi again.

Is the dinner thing common? I am forever fighting my kids to eat theirs. Then they are 'starving' in the morning that they eat their breakfast at home, get to school and eat their whole lunchbox before the bell rings. I am about to serve them their last nights dinner for breakfast! LMAO

Lilima - I found that with Sam at least, if I put it on a bigger plate so it looks like less, he eats it all. Go figure!

AFM - The appointment is in FEBRUARY!!!! So much for getting them in sooner, aye. *sigh*

Have been meaning to update for a while...

DS has got a place in a 2 day a week program at Autism Qld which starts next week. We have been really fortunate with timing - he had his intake interview there a few weeks ago, and normally it takes quite a while before a suitable place becomes available. But there was a place in the IE program starting this term that has just come available because one of the kids was moving up into an older group, and there was no one on the waiting list ahead of DS, so we got it. Fantastic! The facilities there are fabulous, and from what we've met of the staff, they seem both knowledgeable and supportive. I've been chatting on and off with the facilities manager and she's been very giving with her time, so hopefully this will bode well for DS.

Slight bummer though - DS has been getting recurrent tonsillitis for the last couple of months, and has had to be on antibiotics for the last month - we got in to see the specialist on Monday and he'll be getting his adenoids and tonsils out in November (a few days before his birthday, poor kid). Because he's also been getting sleep apnoea and his sleep has been completely up the wall (he's up for several hours a night in the middle of the night), which has had a huge effect on his spectrum traits - he's much quicker to meltdown, his language skills suffer and he's generally not a happy camper, the specialist agreed that stopping the sleep apnoea is a real priority for him so that the intervention program will have the best possible effect.

Has anyone had experience with a young (under three) child on the spectrum going in for surgery? Fortunately either myself or DP will be able to be with him as he's being anaesthetised and when he wakes in recovery, as well as staying overnight with him, but it's going to be a hard sell explaining to him what is happening. His program providers have said they can help lay the groundwork for it, which is great, but does anyone else have any tips?

And just an add-on - lilima - please don't feel judged as a parent. You do the best for J each and every day - his condition is not your fault. And you have the right to have your own anxiety and stress - you're doing the best you can to deal with it, but you're human honey - and sometimes all of the stress and emotion just spills over a bit. Big :hug: though - it's hard to see the forest for the trees some days and it gets so overwhelming. I've been having a few of those days myself lately and it's hard not to doubt yourself, but remember, you are doing a fantastic and very difficult job. :hug:

BR - we have the opposite - dinner's fine, getting DS to eat lunch is always an issue. We've got to a point where we don't bother with a 'formal' lunch, we just put food under his nose (literally) throughout the day and see what gets eaten. Dinner though, he will happily eat a huge bowl of whatever we put into his mouth, followed by a huge bowl of fruit, as long as he has TV to distract himself with. Without TV, he won't touch even his favourite foods. And most nights, we have to feed it to him. I know it's probably a bit of a no-no, but seeing he's all ribs, I'd rather he eats a decent meal than make a fuss over how he eats it. Breakfast, on the other hand, he will eat himself - sitting down nicely at his table, and eating it all by himself. I suspect that by dinner time, he's just tired and it's all a bit difficult for him.

We just got another assessment back. It says DS has a global developmental delay. I am pretty shattered as they just sent it in the post. He has just turned 4 and in most areas he is scoring on what a child just shy of 3 should be doing, They never even completed the whole test, as DS started palying up a bit. He scored 12 for the Autism scale, that has a threashold of 17, meaning that he has low autistic behaviours. With the developmental behaviour checklist, he scored 31, which they consider within normal for his age, but shows that he does have some behaviour problems.

A lot of the stuff that he scored low for was because he refused to do it................... I am feeling terrible and have cried non stop for the last 24 hours. Every time I look at him I cry. I feel sick, lost and alone. I have called the assessor, but she was not there so sent an email. How can they just send something like that in the post without explaining it?! I don't even know what the long-term plan is. They never explained.

Suse - My DS went in for gromits etc at the age of two, he became really aggressive when he came out of the anesthetic, but this could have been due to a reaction to it.

Lilima- big hugs, I hope you can get some answers xxx

Yesterday saw big dramas in our house, while Hamish has seemed to settle in to school holidays not to badly, we meet up with friends from school at the park yesterday afternoon.

It seems two of the boys had turned on an electric bbq, they then told Hamish to touch it. Of course he did and ended up in hospital with 2nd degree burns to his hand. His screams tore my heart out, he has hypersensitivity in his hands so I can only imagine the pain he was in.
It took several doses of drugs to calm him down. His screams were ones I hope no other Mother ever has to hear.
My big problem now is worry, Will Hamish ever learn not to do what these boys tell him?
Last year they told him to kiss the toilets at school and he did, they told him to pull his pants down and he did, they told him to wee on te floor and he did. I have kept him away from the one in particular who has been caught telling him to do things by the teachers. But now this.. How do I teach him not to do what they say?

Tan I am SEETHING.

I only have rants punctuated by swearies.....but I think you need to speak to the parents of these children. They need some education.

*grunt*swear*punch the wall

Tan that is just awful. :hug: Oh man. He's so trusting, and to have that abused. Far out that's just awful.

:hug: It's so confusing hey Lilima. DH and I sat through a 45 minute OT appt, and came out and I realised...I don't even know what OT really is...I don't know up from down with this stuff.

Me either Nelle, I had to ask Christie....and if it was really necesary...she said YES, so I went with it.

My Goodnes! Poor Hamish. That is absolutely terrible! Will he end up with long term scarring?

So EI lady came over, and I could tell that she looked scared to talk to me. She then began to explain the PEP III test that J completed to me. Basically it is a clinical test that has to be done within 1.5 hours regardless of if the child can sit through it or not. Then you get a age in months for each area at the end. J's all were quite low, and well under his age, which upset me no end. Not that it was the result, but that it was so insensitive to just put it in the post.

Well it turns out that you lose 6 months off your age for each task you fail - J flat out refused to do a lot of the assessment even though it is stuff that he can do, so it was a fail. For example he lost 12 months off Gross motor as he has not shown preference for left or right hand and he wouldn't swing a ball around for her.

I am not saying that he isn't lagging in some areas's but he is def as not far behind as the test indicates. He has behaviour/anxiety probs, so of course he was never going to complete the tasks set in a clinical setting. Although in regard to the behaviour scale, he actually sits on the Lower side of normal. So there is work that needs to be done, but he is going better than first thought. He is also not on the spectrum, so again I feel funny posting in here, but I think with his behaviour/anxiety issues, if you guys don't mind I would love to be able to keep posting.

It was also clear that he prefers to learn through technology such as computers and ipad's etc. EI is going to put in an application to try and get him an ipod touch. They have said that he may be eligiable for an aid at kindy next year as he has defecits in 2 areas (behaviour and speech) so although technically I doesn't really need one, they may be able to get one which would be great as he would get that extra attention. I now have an interview with the kindy on the 14th as well as a different worker from EI so that will be good.

I have decided I am not going to put in a formal complaint, because I have to keep working with these people and I want it to be as postive as possible.

On a +++ note - we went to a 4th birthday party today, as he was awesome. So well behaved. Not one incident.

Lilima I am glad that some one came and sat and explained it all to you. Sorry that it didn't happen that way first. Sounds promising that they are going to look at getting J some extra support.

Lulu I don't know how I managed not to loose it at this child's mother. I think the fact that I was so focused on trying to get Hamish to breathe and help him as much as I could.
I am still quite angry , especially when Emma told me after that the two boys had turned it on and knew that it was hot. So they knew it was hot and they still told him to touch it.. I cannot get my head around a child that does this.
Emma also told me that the child tried to blame the other by saying he turned it on. I am really mad. I know this Mum quite well and we have been friends for a while. The boys went to kindy together. Unfortunately she also sees this one child (she has two) through rose colored glasses.

As for scaring we are not sure yet, he has some dressings on , which are meant to be on for 7 days but already today he has been picking them off. He hates anything on his hands and the tape holding the dressings is driving him crazy. Tomorrow I have to go get it re dressed. I can see some very nasty blisters and some skin which is dry and cracked. My main aim is to try and keep dressings on and infection out. I am aiming for Wednesday that the blisters still be intact. I guess we will know then as he is going to the burns unit so they can have a better look.
It appears that the main concern is the large blister he has which is at the base of his fingers, we are hoping it will not tighten and impair movement.
I cannot believe a trip to the local park for a picnic would end in burns... I watched him like a hawk next to the creak. I stood next to him as he climbed a tree and i watched as he happily played on the playground and rolled down the hill. I never expected a burn, we were not using the bbq's and were no where near them.

Today Emma sat him down and told him that she didn't think he was a very good friend and Hamish told me he doesn't like him anymore. He was quite upset because this little boy is coming to his birthday party in 2 weeks, that's if he can still bowl..he is meant to have a bowling party.

Sorry I just rambled along trying to get my thoughts out of my head. While Hamish lay sedated in hospital I shed a few tears with a wonderful nurse as I explained what had happened and about his Aspergers. She sat with me as I cried wondering if we will always face these challenges. I am thankful to her for taking the time to sit with me...

:hug: Tan. Poor little Hamish :( It's so saddening that even at such young ages, there are others who will take advantage of his condition (as it seems that this is what this little boy has been doing, and it's incredibly disturbing that his mother won't acknowledge his behaviour). :hug:

Heya girls! Sorry I haven't been around, been working heaps and I got sick while working... blah blah blah.

OT. Occupational Therapist. The kind our children generally see are paediatric sensory OT's. To get a good one, you need one that understands Spectrum issues as well as SPD (sensory processing disorder). If they don't know what SPD is.... move on.

88% of kids on the Spectrum have SPD. All of their issues with SPD are different, some kids only have one area, others have different ones and sometimes they have them all.

Pre-OT Matilda was 4 years old and screaming 3 hours a day and having meltdowns where we had to physically restrain her and escaping once or twice daily and running away. Matilda is now 6 and after 18 months of OT it is rare for her to have a full meltdown. I can happen maybe once or twice a month and she doesn't run anymore at all. I can now go to the toilet and shower without dead bolting the house. The OT helps them learn how to cope with their sensory issues, and has helped Matilda learn how to teach her body to calm down when she gets upset.

When Matilda got anxious, she would breath shallowly and almost hyperventilate when she was winding up for a meltdown. The OT taught her how to take deep breaths by doing exercises and games with bubbles and races with those blow toys... (think party noise makers). She gave us a listening tool to help Matilda cope with different noises (AMAZING!!) and gave us exercises to train Matilda's body to hold urine and be able to make it to the toilet.

I know that was just a peek into what we do with the OT, but I thought I'd write it out for you all :D


Oh Tan my heart breaks for him :( I hope his hands are okay.

Lilima, the ipod touch is an awesome idea, I have known quite a few spectrum families who have gotten them on funding. I haven't tried yet, but I will ;)

OMG Tan, I feel sick reading about what those monsters did to Hamish. To me THEY need some psychiatric help, I am a teacher and that kind of behaviour is disturbing in the extreme. Normal children do not encourage other children to do things which will harm them.
Will come back later and write more about OTs too!!

Tan - Just checking how H's hand is going?

Christy - youalways have awesome information to share.

Nelle - How is Riv going with Spath? What are they hoping to achieve for him in OT?

I hope everyone else is going well.

I am still not feeling the best about everything. I really want to pull him out of this EI and find something else, but as we are semi rural, the options are limited. I think because I have anxiety, I just make the whole thing worse for J.

Oh lil :hug:

I got a report back from our psych yesterday. She has written it in fairly strong terms to ensure we can access the maximum school aide funding....but it's still fairly confronting to read.

xoxoxo

Well... we are about to have a quirky kid meet up tomorrow at my house!! If anyone else with one of our super kids is in Sydney, you are more than welcome, we will be meeting up at my house from 11am so PM me & I'll give you details in the morning :D

Us... well we have a friend who is 11 and spends every Wed after school at our house. She has issues. Her mum is over it, over being yelled at constantly and having a child who is explosive. She said she wanted to rehome her daughter but her ex husband wouldn't agree to it, he thinks there is nothing wrong with T. I adore T. Yes, she is definately quirky. Yes, she has issues, but I love her. I have her a few days a week during school holidays, I have her one arvo a week after school and I have volunteered a bedroom for her if her mum needs a break.

Anyway, I suggested to her mum that she go to our OT because she was over the explosions. I said, if anything the OT can help T learn how to physically calm herself down. :dunno: but her mum is really on the edge. I love T and I hate to see this happen to them. Anyway, she went to our OT and phoned me afterwards. She said "OMG... I walked in and she knew T. She knew all about the way T works. I don't understand, I read about SPD and it doesn't make sense, she's not like that but I don't know." I explained that T has learned coping mechanisms in her world, and when she gets home she explodes with mum because mum is the one consistent thing for her, the one with unconditional love so T can relax herself.

Tonight I took T through some OT stuff... we talked about exercises that would help her. She said she didn't want to scream at her mum, and her mum cried. Their next appt with our OT isn't until next November, so I showed some exercises that the OT asked I show to them. T promised me she would do it. So we shall see. I told her the next time she came over I would check and see if she had, because she has 0 core strength and I would know.... I feel a bit over my head doing this for someone else, as I am NOT an OT, but I did as the OT asked me to do, exactly what she asked me to do (she sent me a letter). So hopefully we will see a corner turn for T. She is supposed to go to high school next year, but I can't see how she can do that. She's one of those who would turn to drugs etc because she just doesn't feel right within herself, ykwim? I just don't want to see that....

Anyway... M had a tough day today, we had a play date prior to T coming over, and that always sets M off.