Aspergers/Autism/Sensory Integration Chatter #5

[Just Me]

Hi all

We are currently having DS1 assessed for spectrum disorders. We have had an initial appoint with the paed who said that his behaviours are definitely concerning but is keeping her opinions open at the moment saying it might also be anxiety. She did say that we can't rule out a spectrum disorder at the moment.

We have had a hearing and eye assessment and it is all within normal range.

We have had our first meeting with the psychologist (DH and I went by ourselves). He scored quite highly on the behavioural side of things but developmentally (as a baby) he was within normal range. We take DS1 to see her tomorrow. We also have a couple more paed appointments and a speech therapy appointment for him coming up in the next few weeks, so busy busy.

I am so glad that we are getting him assessed because it is giving me someone to talk to about it all. Everything is just so hard. Last weekend, we went on our second holiday this year (this was just a short break - three days) but DS1 didn't cope. I wondered if he would because he didn't cope on our last holiday (which was over a week). He cried (well, screamed actually) the whole time. When we got to the end of the three days, I said to DH, do you realise that he hasn't smiled once the whole time we have been here? He had nightmares all night the first night, he couldn't sit still and lost it over everything. Now we are back, he has stopped eating again (he stopped eating during our last holiday and it took nearly two months for him to start eating properly again). And he has lost it at playgroup badly and it has just been hugely stressful to try and take him anywhere. I am kind of glad that he is meeting the psych tomorrow. There are some weeks when these things aren't an issue and I wonder if I am just imaging it to be worse than it is and then there are weeks like this week.

The other interesting thing about our last two holidays - DS1 has developed school sores on the second day. Both times in his hair, both times with massively swollen glands behind his ear, both times none of my other children have had them and both times he has needed to go on antibiotics to get rid of them. I don't know if the school sores are making him unwell and causing the behaviour or if he is so stressed that his immune system is weakened enough that they are becoming an issue.

I am really struggling to explain to my family what is going on. They were on the holiday with us over the weekend. They think I am overreacting by having him assessed. My mum is angry at me because I am trying to 'label' him. To me, a label won't change anything, it just means that we can understand what is already going on. I think she thinks by labelling it, I am causing the disorder for him. She doesn't see what I see and what she does see, she puts down to tiredness, illness, me not controlling him properly. I feel so alone and unsupported. People at playgroup think I am just letting him get away with being naughty too. They don't understand and when I have a child that is running in a circle and flapping his arms while screaming his head off because it is outside playtime and he wants to stay inside, they see it as a poorly managed tantrum. I could see it coming for half an hour before it started and I know that it is not really about going outside, he had been working his way into it for quite a while, it's just no-one else can see what he is doing until the screaming starts. But I can tell because of the grunting, the way he spins his head and the way he runs around me in a circle. I can read his cues now, but I still have no idea how to stop it.

I wish I could make people understand because I feel their judgement so harshly when I don't come down on him hard for acting that way. Instead I sit with him and try and help him calm down, sometimes it takes a really long time. I have found, until today, that breathing deeply next to him is enough that sometimes he stops and breaths too. Today he told me to stop roaring at him because sounds intensify so much to him when he is feeling overwhelmed like that.

I don't know, maybe I am just a terrible parent and I have caused all his issues. I am tired and I am really stressed. I walk on eggshells.

The thing is, he is such a great kid. He is really gently, loving, kind and sweet. We love him to bits. It is so hard to see him go through what he goes through because even in the midst of what he is doing, we can see that great little boy beneath it all. We just don't know how to help him though. We are worn out and we don't feel like we are doing a great job. We get no real life support apart from professionals who are the first to recognise that something is not quite right.

Sorry to dump like this. It has been a really hard week and I just needed to get it out. Reading some of the posts in this thread triggered a lot of emotions for me about what is going on. I don't really know what the point is. I feel like I need to be heard by other people who understand.

[Miss.B]

Just me, big hugs hun. I'm glad you're getting your DS assessed as with some sort of diagnosis I would think you will be able to understand what he is going through and help him get through it. I find the behaviours of others the complete opposite. For example, my mum and dad are worried about DS's flapping. My mum pointed it out to me when he was around 6 months old (he started then), and back then I just thought he was really excited (it could still be excitement...) and I took great offence when she asked me if there was something wrong with him. Then at gymbaroo, one mum was staring so badly at DS when he didn't want to sit still on the mat and was flapping wildly, I thought I would slap her. I am always aware when he is doing it, and when we are out or I have friends over, I often look at their reaction to it. Most times when we are out no one looks, but in my head I think they all staring. If he is not flapping, he is kicking his legs. It's only when he is sitting down to eat or is in his car seat or his pram. DF thinks I am over reacting and that he does it to get rid of excess energy or when he's bored/frasturated/upset or just happy. It's literally driving me crazy to be worrying about this 24/7, I said to DF last night that all this worrying it's starting to take over my life. I can't wait to get him assessed to look deeper into it and find out if there is concerning behaviours or it's just something he will grow out of when he starts walking like the pediatrician said.

[Just Me]

Miss B - Thanks.

Well, we saw the psychologist today and DS was a perfect angel ... always the way!

She is reluctant to recommend a diagnosis on the spectrum because he was making good eye contact with her and talking to her. I did point out that the only time he talked to her was when he wanted her attention but was not actually engaging in any kind of conversation - just getting in her face until she acknowledged him and then going back to playing.

She is concerned about his play. He picked on toy to play with and while she could get him to look at other toys, he wouldn't play with any other toys and always went back to the helicopter. He spent the whole session lying on the floor spinning the blade of the helicopter. She tried to engage him with other toys/imaginative play and he didn't do it. She tried to get him to act out different play scenarios and he would look up and even went as far as taking the toy from her, but would only look at it for a second before going back to the initial toy.

She tipped out a pile of cars on the floor and told him to play how he liked. DS1 lined them all up straight away and then she said that is interesting but also a usually behaviour for playing with cars. She messed up his line to see his reaction and he said to her "Hey" but because he didn't appear upset to her (he was upset though and when it happens at home all hell breaks lose but he tends to be more forgiving with strangers), she said it probably isn't an issue (though he did line them all back up again afterwards) because one little boys she had hit her when she did that to his toys. It was all very comparative to other kids.

She also gave him some picture cards with different faces on them. The first one was happy which DS1 guessed as 'sad' and then she prompted him with questions 'Do you think that face looks angry?' 'Can you make a sad face?' He couldn't do the sad face and eventually answered 'happy'. She then showed him two more cards - sad and angry - which he guessed right straight away though I am dubious because those are the two things she mentioned already when looking at the happy card. She gave him 'surprised' at the end and he had no idea. We do a lot of emotion cards with him at home and practice the facial expressions of different emotions. He doesn't get it and I don't think he got it today with the psychologist but she said that he did better at it than most kids his age.

He grunted the whole time we were there. He grunts, all day every day at the moment. It used to be a different noise, but at the moment, it is grunting and it happens twice to three times every minute.

She said he has developmental delays (because of the play), sensory issues, a little bit of regression because of the birth of DS2 and she thinks it does stem from anxiety rather than ASD. She said he was quite baby like. While he looked 3 years old, he acted like a two year old or younger. She said that normally with three year olds, she finds the session quite stressful but she said she enjoyed working with DS1.

But she said because he could make eye contact and because he responds when his name is called, she doesn't believe that he is on the spectrum.

I am not too phased whether he is on the spectrum or not. That is not what this is about. I want ideas for managing him. I want to know how to help him be successful at school (not academically but socially), I want to feel like I can cope with this and not out of my depth all the time.

She said to get some books on sensory issues or I could come back to her and she would work with him through the sensory stuff and give us some ideas. I have another appointment with the paed next week so I will talk to her and see what she says. I can get a referral for more sessions with the psych then if we think it will help.

So it is something at least.

TBH, I really don't know much about sensory issues so I guess I will get a few books and go from there.

[Miss.B]

Just Me, baby steps hun, and I know you'll get there with your DS. I know how you feel about not caring if he is on the spectrum or not, you just want to know how to help him and manage him, basically make him a happier child! I feel the same. If there is an issue with DS, I want to know how to make it better for him and get all the appropriate help. I am very anxious but excited at he same time to finally get some answers to my questions soon. I spoke to mum today and of course the first thing she says is that she is worried about her grandson. Hellooooo lady!!! so am I but you don't need to make me even more worried. My mum has this uncanny ability to paint the whole world black. Anyhoo, I kept the conversation short after she said if there is something wrong with him, don't muck around, just 'fix him'. OK mum. Grrrrr!

[~mamaspice~]

Matilda did the ADOS assessment with a child psychologist, and then the paed did another assessment (can't remember which). She got in the medium range for ASD through the ADOS. However, she was considered high functioning on the other one .

Where do you think your DD sits on the spectrum Christy? Do you think the ADOS assessment was fairly accurate or do you think moreso the other assessment?

s Freya, it sounds like you and you DS have been having a hard time. I hope the last few days have been a bit better for you. I've got one of Tony Attwoods books actually and I was considering seeing if I could get DD in to see him up in bris. Will wait and see how everything goes at CDABS I guess.

Miss B, my DS who has just turned one is a mad flapper. He does it when he is excited and has done so since he was about 7 months old. He flaps all the time so I guess he gets excited alot! In the back of my mind I worry too so I understand your concern. He has also been slow with some milestones. Well his gross ones anyway. He does point and he does clap and wave. He does respond to his name (although not all the time). But he didnt roll til 6 months. Didn't sit til 9 months and has only just started crawling at 12 months. He does a funny crawl. I call it the frog crawl.
Funnily DD (who we're in the process of being assessed has NEVER flapped. So I'm really hoping it's just something DS will grow out of in time. I guess only time will tell.

[~mamaspice~]

I am not too phased whether he is on the spectrum or not. That is not what this is about. I want ideas for managing him. I want to know how to help him be successful at school (not academically but socially), I want to feel like I can cope with this and not out of my depth all the time.

This is how I feel too. I just want to know how to help my DD and for her to be the best she can be and have a happy life. I guess that's what we all want really.

[Bumperstump Cummerbund]

Hi ladies :wave: I'm joining this group on behalf of my sister and her son until she's ready to join herself.

J is almost 3 (November). He was a really friendly, happy bub, made eye contact early and often, generally accompanied by a great big smile. Somewhere along the line he's lost the eye contact, he gets overwhelmed fairly easily and has speech issues. There is a history of autism in his dad's family, so all the testing has started early. His OT said he's definitely on the spectrum, and now they've gotta find out where he is and what he needs to do.

I don't quite know how to describe his speech. Sometimes it sounds like he's just got a bad lisp, other times he misses out part of the words, and sometimes he says them perfectly. His hearing has actually been tested too, because sometimes he sounds like a deaf person sounds when they talk.

He's very fussy on what he'll eat - at the moment, he's pretty much on jam sandwiches, cucumber and mandarins.

The hardest part is that he doesn't exhibit these behaviours all the time - sometimes he'll respond normally and just be generally perfect. Other times he may as well be deaf, because he simply won't listen or respond. Apparently at daycare, when he gets overwhelmed, he climbs into a toy washing machine that they have and just sits there for a while.

I wanna know what I can do to help. At the moment I look after him once or twice a week. We're getting into a rhythm, but I wondered if there was any OT type of stuff I could do with him that might help his speech or interactions?

PS - Reading through the stickies in this section makes me miss Lulu

[meow]

You know what I think... get him onto GAPS. I'd say the toxic load has built up causing the regressions. My son is the same. On his bad days he's likely reacting to gut issues from too much gluten, constipation, chemical exposure (such as chlorine pool, cleaning products etc) or something similar.

[Bumperstump Cummerbund]

Haha, you're reading my mind Something I forgot to mention though, is that my sister (J's mum) has recently been diagnosed with a dissociative disorder. J exhibits symptoms of that as well, but I imagine ASD and DD are in the same 'family'. Anyway, her DD will mean she won't wanna do GAPS, it'll be too much work.

I might try just emailing her the info and letting it be 'her' idea, she may do it that way. Very difficult to help her, because she understands when you're trying to get her to try one thing and fights to the death to do something else

[Freya]

Just Me - the not looking you in the eye is a common misunderstood symptom! My Ds2 has no worries looking people he knows very well in the eyes, and if he doesnt know them all that well he will look past them but appear to be looking at them. If its someone he doesnt know he wont look them in the eye at all. Sometimes he wont look me in the eye if he is agitated, anxious, angry or having a meltdown. I have been trying since he was quite young to get him to look people in the eyes. Usually if I want to speak to him I say "Ds2 look mummy in the eyes, Id like to talk to you!" and after a few prompts he'll do it but he doesnt hold it for long. A a FYI about paeds in Townsville; Pat Ryan is apparently an excellent paediatrician for ASD. Also I went to the Tony Attwood seminar, I have a few handouts and things to do with ASD that you can have to look over, it was very informative.

MamaSpice - unfortunately Ive come to find out Tony Attwood isnt taking on any new patients anytime soon But if you do get the chance to attend one of his workshops or seminars do so!

Well our week has been a bit better but for some reason Ds2 has suddenly gotten quite agitated about going to preschool. He's been in some kind of care since 12mths old so its not like its new to him. He cries, he hangs off me, he tries to pull my hair. He is fine after I go but he really fights to not go.

[~clover~]

We're having a really hard time at the moment.
Circumstances have us living with my parents. Mum is fine & understands the kids... dad is impossible

He's home full time so ds's melt downs are met with a lot of hostility. Most of them anyway. Sometimes he tries to distract ds & help.

We have to get out of there. Life is impossible...



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[Just Me]

Clover - That does sound like a really tough situation. It is so hard trying to explain meltdowns to other people in a way that they can understand what is really going on. We get told a lot that DS1 is just naughty. It really doesn't help. It must be hard for your DS getting used to changed living arrangements as it is and I'm sure your Dad's hostility is contributing to the length and intensity of the melt downs as well. Deep breaths, you can do this. I hope you can get out of there soon

Freya - Thanks for your post. My DS sounds very similar to your DS WRT eye contact. We are seeing Donna Gandini as DS1's paed. She seems really great. We have another appointment with her on Friday to go over family medical history so we should be able to talk through some of the stuff the psychologist said then. Glad that you have had a relatively good week and I hope the separation anxiety is just a temporary thing.

Well, I was going to write a longer post, but will have to come back later. DS2 just woke up ...

[~mamaspice~]

Clover s If I remember correctly your DS's assessment has not yet determined where he is (if he is) on the spectrum but if you suspect he as aspergers like traits there is an awesome coffee table book you can buy called: All cats have Asperger Syndrome by Kathy Hoopmann. It's a beautiful little book and a great way for family members to read and understand the joys and challengers or raising an aspergers child. Seriously, buy it and give it tand leave it hanging around for your dad to read. if you google you'll see you can buy it online for around $20.

[Just Me]

I have been looking online for a story book for DS about SPD so that we can explain a bit to him about why he feels they way he does, but from the sample I have read from four different books, they are all so negative!

I have looked at

"Why Izzy Covers Her Ears" and the first page says "Hi. My name is Izzy and I started grade one 32 days ago. I hate to tell you, but it has not been as great as my kindergarten teacher said it would be."

Way to give kids a really negative impression of school before they have even started. DS1 is about to go into kindy. I don't want him to be scared of going to school. I don't care how much better the book gets as the pages go on, the idea that school is not great is right there on the first page. Maybe it would be alright for a child already in school and having trouble but I am after a book to describe to DS1 what is happening and I was thinking a book we could read with our other kids and a book that DS1 could share when he goes to school to help other people understand what is going on for him and to normalise it all a bit more. This is not the book!

"Sensitive Sam: Sam's Sensory Adventure has a Happy Ending" and the first page says this "Hi! They call me Sensitive Sam. I am always sad or mad. A lot of things bother me but I don't mean to be bad."

DS is not ALWAYS sad or mad and I would not label his behaviour bad. This is written by a woman with a son who has SPD, but I find it really insulting. I wouldn't read this kind of story to my three year old.

"Squirmy Worm: How I Learned to Help Myself" and the first page says "Hi my name is Tyler. I have autism and SPD, or Sensory Processing Disorder. I am learning why I do some of the silly things I do and how I can help myself or how I can ask for help when I need it."

I don't like the label silly. It might be silly by society standards but to them, it is perfectly valid behaviour. The book sounds like it might be okay, but that word on the first page means that I won't read it to DS. I don't want him to label himself as silly.

"Arnie and His School Tools: Simple Sensory Solutions That Build Success" and the first page says this "Hi, I'm Arnie and I didn't used to like school very much."

Again with the negative attitude about school. I don't think it is a given that children with sensory issues or ASD are going to find school a miserable experience so I don't understand why these books need to start out that way. Admittedly, I have only been able to read the first pages of each of them, but there is so much negativity written into the first page, I don't think I could get past it to read the rest of the book with DS1. I was looking for a book that was positive and helped DS1 understand, not one that made it seem more negative and abnormal. I don't think his behaviour is abnormal or silly at all - for him it is very normal and I don't want him to feel bad about it. I want him to learn to manage it because it will be better for him and I think he will understand that over time, but that doesn't mean that it is not valid.

Sorry to vent. I find it really frustrating!

Does anyone have any books for kids related to SPD that don't have the negative messages?

I wish I knew more about SPD. I would write my own book for DS1!

[~clover~]

Hey guys.

Have been to the gp again. The ot wants to view Jesse at day care, which I'm stoked about, coz it's the social settings I'm worried about as well. Problem is that she said that 4 weeks ago. Almost 6 weeks after the assessment. So that's near 10 weeks now & we are going away for 2 weeks tomorrow.

So the gp has given us the paed referral, so we can organize that. Hopefully we'll have her report by then.

His behavior is escalating.

DD2 has been referred to a psychologist. We're hoping to reduce her stress levels.



JUST ME- try googling blogs etc. Is your ds a seeker or avoided? (sorry, I know I'm behind) I can't recommend Steiner schools enough for seekers. I'd have dd there in a second if there was a bus. It's almost an hour from here.

I don't know about books, but I think your own research & making a book of your own would be a great idea

[~clover~]

Finally! Ot views jesse at day care on the 28th then bri has some anxiety therapy on the 5th of November.
Bout time.

[Miss.B]

Hi ladies,

Sorry I don't post in here much, mainly I'm a stalker

Clover, I'm glad you're finally getting somewhere with both your kidlets!

Just Me, I suspect that my DS has some sensory issues, I'd love to read a bit about it but ATM I'm mostly getting my info from Dr, Google..

We have an assessment on Wednesday where the MCHN will do one on him and if he scores below a certain level, she'll refer him to a developmental paed. I sort of can't wait to get the ball rolling, but at the same time I'm scared of what the test show or what the paed. has to say.

Hi to everyone else, I'll come back and update you on how it all goes.

B

[~clover~]

Ok, ds has the ot going to day care on the 28th, then I'll get his report on the 5th (3 damn months later!)

Dd finally has an ot session on the 5th. For anxiety.