Aspergers/Autism/Sensory Integration Chatter

[Loz23]

Hi Sarah,
Am only new here, joined a while ago and havn't done much about it...I came accross your entry when I was looking at Belly Belly for things on Autism. My son is seeing the pediatrician for the first time on the 23rd of this month. He hasn't been 'quite right' for about 18 months but I just put it down to challenging behavour- it wasn't untill I read this book on Autism/Aspergers that I thought 'Bingo' thats it. From what everyone sais the process of getting a diagnosis is long and difficult and I am absolutely terrified as we are at our witts end now. I noticed you're in Townsville and I wondered what pediatrician you saw as we have recently moved here too. Also weather you had any advice for me. This is just so hard because we feel like we've been robbed of the son we thought we'd have and then the guilt sets in because I love him anyway but its just not what I expected and his behaviour makes it really hard to even like him some days but its not his fault!
Any help would be greatly appreciated
Lorin

[~Saram~]

Hi Lorin,

Sorry have only just found this now. Yes we are in Townsville and we have tried a couple of paeds in town and haven't found any of them overwhemlingly helpful but I will try not to vent (unless you want to hear all the gory details :-P

We found the BEST help from our OT Gillian Balentyne, she did an assessment and wrote to our paed to tell him to pull his finger out. We have also had a lot of help from DS schoola and the early intervention team - how old is your son?

PM if you want contact details or just to catch up and have a chat - my home is quickly becoming a make shift OT therapy room so very ASD friendly (except for the undone housework of course)

Don't feel guilty about your feelings, we all have them! I pendulum every day from wanting to scream to just wanting to hug him to pieces. today he drew us a picture with real people eyes, mouth, arms and legs!!!! I was so excited! got to celebrate the small victories

[Loz23]

Hi Sarah,
thanks for posting a reply I was really hoping you would. Sorry I couldn't work out the pm function but I guess this is aplicable to everyone anyway. My son is turning four next Tuesday. He functions well but has some strange habits that seem to fit with Aspergers or even Autism. He head pats...alot, constantly, he is absolutely obsessive, he can't make friends, he has delayed speech and insane tantrums if his routine is interupted, it just feels sometimes like the lights are on and no ones home. Having said that he does show affection on his terms. I don't know for sure yet as we havn't seen the peadiatrician but you just know when somethings wrong don't you? Anyway, we have an appointment with Dr Pat Ryan and I was sooo glad you said Jillian Ballentyne was so good, she came highly reccomended to me from someone elso so I've already gone ahead and made an appointment with her regardless of what the pead sais. How old is your son? I would certainly love to keep in touch, I've made quite a lot of friend here in Townsville but as I'm sure you'd know playdates with other kids can certainly be challenging sometimes! he usually just withdraws and stands on the out side.
Anyway, enough rambling from me...thanks so much though

[~Raven~]

Hi Lorin and welcome

My little guy has come ahead in leaps and bounds since starting school. He has an integration aide that comes in and helps the teacher, class and him. We were really scared about him being labeled or singled out but the diagnosos and the help is getting has made it all worth it.

I found 4 to be hardest. At kinder my son would hide under tables or bury his head in the couch, especially if the other kids were rowdier than usual. His best days were when there was a nasty flu going through the kinder and half the class was off sick. I know your kinder system is different up there but he had 3 years of kinder (2 of 3yo and 1 or 4yo) and was already 6 when he started school. That last 6 months of kinder he seemed to go through a bit of change and a few of his worst traits seemed to settle a bit. They are still there but we are able to get him to recover from an episode a lot quicker now he is older.

it just feels sometimes like the lights are on and no ones home.

He is taking EVERYTHING in even though it may not seem like it some times. Part of the problem with Aspergers kids is that their brain gets overloaded on things because they can't stop thinking about them. When this happens they find it hard to switch between tasks or even listen to what you are saying. It can take a few days for a reaction to something to happen too so if he has a melt down it may not be the events of that day he is reacting to.

[Loz23]

thank you Raven for your welcome,
its so nice to have some people to share this with, knowone else in our family has experienced this and my husband is sick of talking about it, I think he's actually grieving the loss of the 'boys boy' he thought he'd have as our little boy can be quite shy and withdrawn at times, particularly in a group situation.
Its so hard to know whats going on in his head some days! we're all new to this and I guess we'll know more when we see the pead and the OT. I certainly understand the kindy dilemma, we used to live in New South Wales, when he was there he went to a 30 place kindy/daycare since he was 4 months old. He went really well there, the staff were lovely, it was a small group and it was all very familiar for him. When we moved up here he had serious issues adjusting, when I'de drop him off at the daycare (a 300 place centre, because they are all enormous up here) he used to run and hide and cry in the cubby house the minute I left, every morning the same place...I couldn't take it, so I've pulled him out and he's just at home with me now, but I don't know how that will go when he gets closer to school!

[christy]

Loz welcome, I understand the fear of child care.... I tried Matilda at a community centre and she freaked. She wouldn't eat or sleep while she was there. She would come home and scream until she went to sleep. It was so sad, so we pulled her out. I found a Montessori nearby and that has been amazing. Montessori was developed for children with special needs, so its different. They focus on one sense at a time. At her kindy they have specific Montessori hours and the other time is playing outside. There are 5 autistic children in Matilda's class with her, as well as 2 developmental delay children.

Next year is her school starting and its so scary! I have found an independent school where we will be living that has 16 students, so I hope it goes well!

[~Saram~]

Hi Loz,

We absolutely should catch up, play dates are impossible with other nonasd kids as Xander doesn't mix or the other kids bully him and it makes it sooo hard as the other mums don't understand why you don't want to "drop round for a coffee and let the kids play" Not sure why pm's won't work, maybe cause your a new memeber not sure but my email is sarah@naturalparent.com.au If you email me I can give you my number. We are actually going away for 2wks to Brissie - always fun but perhaps we can find time for a chat after that?

Pat ryan is apparently very good however i have heard his bedside manner is quite abrupt. Some other parents have suggested that he himself suffers from Aspergers which is why it is an area he specialises in. Are you seeing Gillian before the paed or after? She will do up a great report which is good to show the paed. Also download the autism/aspergers checklist and go through it with your partner before the appointment. The write down all the little incidence that pop into your head while doing the checklist and take that to your appointment.

We were unprepared for our first paed appointment (Dr Frischman) and walked out feeling useless and stupid. Of course that was the day when Xander walked in looked the dr in the eye and said hello without being prompted then played nicely with the toys :-) He sent us to a psychologist (who was lovely but didn't give us any straegies we weren't already using) and said to come back in 6 months - which we didn't. it was only after talking with gillian and the early intevention team (based at vincent state school) that we had the confidence to go back and yes that day DS was having doozy of a day and we walked out with a diagnoises.

Where abouts in townsville are you? Xanders school is brilliant his prep class has 12 students and he has come SO FAR! this year and they are working really hard to make sure that it continues next year. Annadale Christian School is where he goes and they have a preprep class 5 days a fortnight for 4-5yr olds (but it isn't cheap) there is also aeiou and I think they specialise in early childhood autism/aspergers.

[christy]

Ohhhh Sarah! I'm in Brissy.... When are you here?

[~Saram~]

Hi Christy,

We arrive Sunday 21st and leave around the 1st ish? Where about's in brissie are you?

[*Efjay*]

Ok Ladies... Have some questions.
Maz, you are already awear of the situation with Evan. But for others here is a quick run down.

Evan is 6, has been showing signs of Anxiety for some time now. We new this was something that may pop up as DH is also suffering from anxiety & apprently there is a long list of men on his side of the family who have also suffered in silence. it only came out when Simon came out about it.
I have posted a few times about Evans behavour in other threads. Again basic run down, gets very frustrated, has some rather full on spaz attacks, often hitting, kicking yelling screaming etc.
It got so bad about 2 or so months back I was in tears most days after he went to school. Only for him to melt down again once he was home.
I spoke with his teachers who were surprised to hear of this. He is a lovely student, coping well at school etc etc.
I requested to speak with the school counsellor who acknowledged his behaviours at home as being anxiety related & that he is working hard to keep it together at school but then melting down at home.
We changed a few things at home & seen an improvement in his behaviour.
But now we have issues with school work & the concern he isn't doing well is becoming more true. He has trouble with his home work, reading, spelling etc.
I again mention this to his teacher who agree's he isn't reaching his potential & thinks its a lack of focus. Says he is very easily distracted in class & she can tell he is funny if the routine is changed.
Same day the school counsellor calls & asks how he is doing. Says that the form I filled out last time we spoke does have some markers for ASpergers. But she thinks its related to the anxiety he clearly is suffering with. Suggested he watch him into the new school year & see if those things develop any further & take it from there.

So now your somewhat up to speed.

Here are my questions. DH has been seeing a psychologist for his own anxiety issues. Obviously he has been discussing Evan. He said she said we should look at having him assessed ASAP.
said that we should be able to arrange this through the school.

I don't know what path I should be taking, the school counsellor has already said lets wait & see. The psychologist who has never seen Evan, only going off what DH tells her says getting him seen to ASAP.
Now Can I go to my GP & explain our concerns. Who am I meant to see to have him assessed?
the SC has already said there is very little around for kids his age, its starts with kids 8 & up.

I just have no clue as to were I should start. I thought the SC was the best place to start but then I have others saying No you need to see your GP & get a referral, but a referral to who??

When I called around for help a few months back I kept getting pushed onto the next person. "Oh we only deal with kids up to 3, call so n so.. Oh we only deal with kids up to 5, try so n so ....

So I am a little lost as to what we should be doing & then I have DH breathing down my neck asking what I have done to get things moving... But I don't know were to start.

[Kahlan]

Here are my questions. DH has been seeing a psychologist for his own anxiety issues. Obviously he has been discussing Evan. He said she said we should look at having him assessed ASAP.
said that we should be able to arrange this through the school.

Hi Fiona,

sorry that you are going through this tough period. I hope I can help you.

I am, beside an asthma educator, an OT and a child and adolescent mental health clinician. (I should came into this subforum more often)

From your post I can not ascertain exactly the extent of his behaviours. does he express feeling sick (physically like wanting to vomit)? Does he refuse to go to school, don't want to leave you, express particular fears...etc.? Without knowing more I can not tell you one way or another.

What I can recommend is access The Child and Adolescent Psychiatry Services (not sure what the equivalent would be outside of Victoria). The school should be able to refer Evan to this service. You yourself should be able to do the refer yourself without the schools input. It is a state funded program and at least you will get some answers.

Hope that helps, if you want more info or want to run things by me, don't hesitate to pm me.

Kahlan

[*Efjay*]

Hi Fiona,

sorry that you are going through this tough period. I hope I can help you.

I am, beside an asthma educator, an OT and a child and adolescent mental health clinician. (I should came into this subforum more often)

From your post I can not ascertain exactly the extent of his behaviours. does he express feeling sick (physically like wanting to vomit)? He will often complain of a sore stomach & does have runny bowel motions & Has had for some time, not sure if that is related or not) Does he refuse to go to school, Yes, But he does go, its never been to the point of dragging him there, BUT it has gotten tot he point of dragging him out of bed in the mornings & dressing him & throwing him in the car.don't want to leave you, express particular fears...etc.?He doesn't have a clingy side as such BUT he does need to be layed with till he is asleep, He does obsess over things, fear realted but it changes. His one consistent fear is spiders. But pass obsessions have been termites eating the house, a bad man breaking into the house. The fan in bedroom falling from the roof on to him while he sleeps, most recent was being in a booster seat with the adult seat belt as he had outgrown the 5 point harness. He was worried it wasn't safe enough. Without knowing more I can not tell you one way or another.He is very empathetic & will often get upset if someone else is. It concerns him greatly that other kids pick on another boy in his class. His teacher has said he is the one to point out if things are not done in order. I have been going in the last few days in the mornings & helping with reading. He is extremely distractible, He isn't naughty as such but he can not focus on the one thing for longer then a few minutes. He is like this at home with homework but just as bad at school. He is abit of a clown at school I have noticed in the last couple of days. Not sure if that a reflection of me being there or not though. He seems to be a bit of a show off. Seeks out the chance to jump up & do something else. His teacher is constantly having to ask him to come sit down. But not from being naught, but getting up to tidy the pencils, toys etc.
At home he has trouble expressing his frustrations & will just have outbursts, yelling (really nasty tone in his voice), hitting, kicking slamming doors etc.
He has trouble listening. But I am thinking this is lack of focus. You can say to him "Stay with us" while we are on a walk, but moments later he is running ahead again. Yesterday DH hadn't even finished saying to stop climbing on a pile of wood chip & he was up on it again. For a awhile I have put this down to just being naughty, but I honestly think it just goes in one ear & out the other. He hears us but isn't absorbing it. He passes the blame & is starting to lie alot also. Yesterday I caught him in the act of drawing on the wall. But straight away he was saying Isla did it, all the while the pencil was still in his hand. I made him sit there & clean it all off. Then explained to him how hard a job it is too do & that I don't enjoy doing it. He seems to understand that. Normally I would just have sent him to his room & then cleaned it off myself. But making him do it seem to make a difference.
He also seems to have no scene of things that are dangerous, Yesterday (after the pencil) I found he had stabbed the couch & put a 2 inch rip in the couch with a knife! He says he didn't do it, it was done the other day. BUT I also know he did open the cat food with a knife & also stabbed a hole into the water bottle. So that plus Glenn dobbing him in all points to Evan doing it. We didn't punish him as such but explained that who ever did it would be a big deal of trouble. Knifes are not to be touched ever & it would be much better if the person who did it would just come forward & tell the truth & while we are not happy about it, that will be the end of it. But he said nothing.

What I can recommend is access The Child and Adolescent Psychiatry Services (not sure what the equivalent would be outside of Victoria). The school should be able to refer Evan to this service. You yourself should be able to do the refer yourself without the schools input. It is a state funded program and at least you will get some answers.

Hope that helps, if you want more info or want to run things by me, don't hesitate to pm me.

Kahlan

Ok, gotta cook dinner LOL

[Wednesday]

Hi,
My son was diagnosed with mild to moderate Autism by a child psycholigist on friday. I always knew he was different from the other children, even as a baby. He reached all his milestones later than the other children and never played like them. When he reached 2 1/2 years old he withdrew himself with playing with other kids. He just turned 3 in december and he spent his whole birthday party playing by himself and not with his cousins. He says a few words, counts 1-10 and is obsessed with cars.
I am now in the stage of crying all the time and I am really mad because I don't even know what caused this. I really don't know how to deal with it at all. For the longest time I was telling myself he was just slow with things and that he would just catch up as all kids develop differently.
I have a great husband though who is trying to deal with this too. But unfortunetly we are getting very little support from anywhere else. Our parents are 2 hours away but it is hard to feel the support from that distance. Our siblings are in melbourne and are not supporting us at all. DS is very anxious around new people or places so I am organising some individual based therapy at home. Maybe eventally we can go to some kind of playgroup or something where he can socialise. I have just moved to the mornington peninsula area of melbourne and know nobody. I did begin joining various groups but due to DS problems I have been unable to meet new people.
I try to look on the brightside of things, like he's very loving and happy etc. but it's a hard thing to accept that your son will never be like other people.
I am glad this forum is here as I need to vent and get to know others going through similar circumstances, so thanks for being here.

[christy]

welcome Wednesday. Its so hard to hear those words and hard to digest and think "so what now?" I found myself totally lost when we are trying to figure things out.

We had an OT appointment today which went really really well. It was our first one with the new OT. It was so refreshing after hearing that its us, or that there isn't such a thing as sensory integration disorder etc etc. I brought all our assessments with us, and we sat down to chat and Matilda was running around going nuts with all the gear in the room. We were talking about what I've been told and we hadn't even gotten to the physio assessment or the vestibular stuff and she said "without having to even read these, she's got a proprioception deficit and is vestibular seeking. I'd been there 5 minutes and she'd picked up some of the major stuff thats going on. At one point I'd said to Matilda to not hang off of something and the OT said "This must be so frustrating" and Matilda started her "flapping" that I'd noticed and been scared about and the OT said "thats not flapping in the ASD way, that is proprioception seeking" and its always the same hand she hits when she flaps and the same way....

Its fascinating all of it. She doesn't necessarily think that Matilda is Asperger's, but she said that its worth keeping in the back of our minds because she said she could be wrong (first person to actually say this) and even with a diagnosis of ASD than she'd be doing the same thing... so I'm okay with that today. I'm happy to see someone who seems to know what is going on without me having to tell her exactly what is going on and how to work with it.

[maz]

Sorry Ive been AWOL...Ive had a shiat of a time with Wilehlm since going back to school ...he now tells me he hates me and has been kicking and hitting me for the last few days.

tonight I flipped...I feel so bad and horrible but I snapped and slapped his face while he was going off at me...I dont know why I did it....I feel horrible...just horrible. he was flipping and kicking me so hard that I picked him up...took him to his room, threw him on the bed and told him I hated him and asked how he liked it.

I havent stopped hating myself or crying since...he wont come out of his room...what have I done!!!!!

Sorry have to go...its to much atm

[MBP_Mum]

My 3.5yr old son (Twin1) is off to be have his assessment done in April,. 6mth waiting list to see a pead. He has had his hearing speech done, his level of speech is that of a 2 to 2.5yr old.

He is not coping well with kindy nor well with one day at day care, teachers and admin of day care have actually said they think he may have aspbergurs. Hence the pead appointment.
He doesn't cope well with change and when he throws a tantrum or something doesn't go his way all hell breaks loose, things have to been done his way (kinda like OCD) if he isn't given the right drink bottle his tantrum will last for over 30mins until he has worn himself out. He prefers to sit on the outter circle at kindy/daycare and doesn't really like to join in much .. Hope i get some insight to all this soon.

[christy]

Welcome MBP Mum its hard to hear that about your child. Matilda didn't cope at all in a day care situation, but in family day care went really well.

Maz... WT??? How disgusting!! They should be fired for that! URGH! That makes me so angry. Mummy you are an amazing woman. I know that fight with Wilhelm has hurt you so much, and you lashed out. But you know at that moment he may have hated you, but he doesn't all the time. He loves you. OKay? Please don't beat yourself up for it

I have a story for you... we were doing some of out "floortime" that the silly paed told us to do. Where its one on one with Matilda & me. No TV, computers, other people, etc etc etc. So we were sitting and Matilda started saying "Mummy, are you ever going to have someone take me away? Do you not want me anymore? Sometimes, do you not want me to live here?" I nearly lost it, but I stayed together & said "Matilda, I love you so much. Sometimes I get frustrated with you and angry with things, but I don't ever want someone to take you away from me or you to not live with me until you are much older." Then I sat down with tears streaming down my face while she kept playing. I've said those words in anger to her... maybe 6-12 months ago, but I did. And I never resolved it. I was so angry I told her I was going to call someone to take her away because I couldn't do it anymore. She would have to live somewhere else. God I felt like utter crap.

But the thing is, this is a way we can teach our kids about speaking out in anger, and how people get frustrated, and how we should have handled it better than we did.

Anyway....

[MBP_Mum]

Welcome MBP Mum its hard to hear that about your child. Matilda didn't cope at all in a day care situation, but in family day care went really well

Thank you. The director at Day care suggeted he may do better in family day care. She said she will look into it for me.