Aspergers/Autism/Sensory Integration Chatter #2

[christy]

Mel, sorry I wasn't around!! It does sound exactly like the paed we saw first during our assessment run. IF you get Annabelle as the OT than you will have a great run! The physio assessment was the one that shocked me.

Hi lestyrox! I'm glad to hear that things are settling a little bit for you.

Well for those that don't know, we had a car accident yesterday. I had everyone in the car as DH was recovering from gastro and I was dropping the girls off to school/day care and then getting DH taken care of. Well on the way to the first drop I crashed the car... I ran into the back of someone else and wrote off our car. It was my fault entirely, I was yelling at Matilda to stop singing about poo and looked up and there was a car 10 meters ahead and I slammed my brakes on but the road was slippery. So there you have it.

Luckily my best friend lived at the bottom of the road, so I phoned her and she came and picked up the kids and dropped them off to their enjoyment. They were both fine, JJ has a bruise from the strap and Matilda is.....well she's Matilda really. Its just added to her heightened sense of anxiety. All they are talking about is the broken car.... mummy crashed the car....

I'm sore today. My back was out last week & I got checked out by a physio yesterday who said nothing is acute from the crash, its just irritated my sore back. I can barely bend today, and I refuse to drive. I told everyone to go to hell and that I wasn't getting in a car again for a long time. I know I'll get there, but I'm not feeling like driving at all.

[~Saram~]

Mantaray - hope the rest of the assessments went well. Our Paed thought Xander was "just" quirky at the first appointment. At our next appointment DS was having a bad day and he couldn't give us a diagnoises quick enough - that and the letter from the OT who spent 3 1/2 hrs doing her assessment compared to the paed who gave us 20 min. As for anti-labels, it's completely up to you but have a diagnoises for ds even PDD which was his first diagnoises allowed us to get him OT on the helping children with autism plan, and teacher aide at school so it is worth getting that label - just for offical stuff. As for tanties - DS didn't have many at all until we moved from Mt Isa to Townsville. After talking to our psychologist and OT I realised how much I changed our lifestyle to 'prevent' tantrums without even noticing.

lestyrox - Don't have heaps of time at the moment but just wanted to say welcome! Your DS sounds very similar to mine with the speech delay and the "not having a converstaion" part. He also was fasinated with odd things like bin trucks and locks. We tried fro the age of two and we were told there was nothing wrong that he was quirky or just a little delayed. He got his first diagnosis of PDD at 4 1/2 and Aspergers at 5. I will send you some links to some checklists and scales that might help

[~Saram~]

double post - sorry

[lestyrox]

Thanks so much saram that would be really helpful if you could send me those links.
I'm really in two minds about the whole thing, i guess since he's improved so much since age 2 i'm not as concerned but i know he's still "different" than kids his age. When we used to go to playgroup every week i could really notice the difference between him and kids his age but we haven't been to playgroup in months so i can't really tell just how far behind he is. I'm thinking of starting him in daycare soon because i'm starting my study back up and i really need a few hours a week to get work done but i'm nervous for him. He loves kids so i think he'll be ok but i guess i'm nervous that the careres will notice that he's different and my concerns will become real if that makes sense? When we saw the speech pathologist she thought he was fine (i didn't mention my concerns about Austism because i wanted to see if she noticed anything different about him) She suggested i get him into some sort of care or preschool structure by age 3 to help his vocabulary.

I've looked at some scales online for diagnosing Autism/Aspergers and Ethan doesn't really fit the critera.. the main things that jump out at me are the delayed speech and unusual obsessions but apart from that he's a very affectionate lively little guy so i just don't know what to think plus his speech is improving every week and he's not as obsessive about his obsessions so maybe he's just been going through a stage?

I know its a lot to ask but if anyone could share the journey leading up to their child's diagnoses i'd really appreciate it. I'm interested to know what other mums found 'different' about their child? Did you have any moments where you thought 'hmmmmm that a bit odd". Where the 'differences' subtle or glaringly obvious?

Thanks so much everyone, i really appreciate your input.

[~Saram~]

lestyrox - have written down a few things I can remember - so much of it is a blur, especially from 4 and on - so many things went wrong so quickly, I can't even remember what prompted it. BTW - I apologise in advance for the HUGE post :-)

Our journey with autism. I have never written it down before so bear with me. I hope it doesn't come across overly negative, these are just some of the things that I can remember that made us wonder/worry

When I was pregnant with Xander I tried to do everything right. He was my second pregnancy after a miscarriage. I had horrible morning sickness and lost nearly 15 kg in the first 14 wks. I felt his first kicks at 14wks. By 17 wks you could feel his kicks on the outside. At 28wks I went and saw a movie and he nearly tore me apart. When travelling in my friends car with a big bass stereo I had to ask her to turn it off as any bass music would set him off. Later once he was born, he had these same reactions to loud music and noises.

Xander was born 4 wks early due to rapid onset pre-eclampsia and toxemia. Essentially I went in for a check-up and a few hours later I had a baby. My labour was fast. but I pushed for 2 hrs to finally hold me baby. He was perfect. He slept. And slept. they took him to special care overnight. I stayed up all night waiting for them to bring me my baby for his first feed but they never did. 4:30am nearly 12 hrs after his birth I went looking for him. We tried to feed, but he would latch on. He just slept beautifully. He developed jaundice and was passing ureatic crystals. They started feeding him formula by syringe and by tube for a few hrs before the paed took him off and got me breast feeding again. He had an underdeveloped such reflex and seemed to have no desire to feed. We bottle fed EBM every 1-2 hrs until I got him on nipple shields. He was on them until he was 9mths old

Xander showed very little interest in any toys. he was not interested in tv. The only thing that would occupy him was the balck and white credits or the "snow" or white noise in between channels. He didn't try and roll. But I was a new mum - 300km from my family and had never had any other kids. I thought you had to teach them these things. So when at 5mths he wasn't doing anything we started practicing. I would roll him over. We spent hours each day lying on the floor. He never actually got all the way over from back to front and only once or twice from front to back but I could tick that off the list. Yes he rolled! This was the same with all his other "milestones" as soon as the mothers from our mothers group started talking about what their babies were doing we would go home and practice. He loved the jolly jumper and we used to put on fast music and he would bounce incessently for as long as we would let him.

We started trying soilds at 6mth. Then 8mths. 9 mths we tried finger food. By 12 mths he was eating maybe one solid meal a day but still predominently BF. He was particular about textures of foods, wouldn't eat cake or broccolli - anything with a grainy texture. Xander crawled in an uneven way on one knee and the toe of the other foot. He was about 10-11mths before he started crawling and would rarely go very far. Xander took 2 steps at 14 mths but was 18mths before he actually walked anywhere. I was very good at convincing myself and others that he was developing at the right rate. In fact it was only after having Ari and seeing how she just did these things that I realised how different his babyhood was. She rolled because she wanted to be somewhere or do something. She sat up because she wanted to, she crawled because there was somewhere to go and investigate. In this way Xander was an easy baby as he was happy to stay put, rarely got into mischeif. All his toys and books were in mint condition - until Ari got to them

Xander never had any seperation anxiety. We used to tell ourselves that was because he was so well adjusted. He was a good boy, although demanding. He lived in the sling most of the time as he was easily frustrated and over stimulated. He would wander off at the park, never ever looking back to see if we were there.

By 2yrs of age he had developed obsessions. Wheels were a big one, locks were another. I actually made him a toy of padlocks and keys. He also was obsessed with bins and the garbage truck. he used to follow the truck and know it's route around the streets around our house. He would be devasted if the truck didn't come. He was also bothered if we moved things around in his room.

He toilet trained at 15mths within about 2wks. By 18mths he was dry day and night. He got extremely upset if he wet his pants. He rarely gave us much warning before he had to go to the toilet - we made a lot of road side pitstops :-)

At 2 we went to see the MCHN about his lack of language and his obsessions. We told her that our nephew had autism and that we were concerned. She told us not to be so paranoid. His language would come and the obsessions were normal. The next two years were wonderful. By three his language was blossoming. Many people couldn't understand him unless they knew him well but he was talking. He loved to talk about fact and things he saw but wouldn't communicate. He never told us he was hungry or cold. Something I didn't realise until I had DD.

His academic ability was amazing. He could count, knew all the colours and shapes, puzzles, he was king. He loved to read, but often when he "pretended to read he would go from right to left or down to up. We thought he might have dyslexia. He would put himself to sleep at night by counting or sounding out words. He got very upset by the unusual spellings/sounds of some letters. But he never "played" with his toys. we often had to "teach" him a game, like buiding a tower, playing with cars etc. Often when we picked him up from daycare they would tell us he had a "sad" day. But we didn't know what that meant until later on. We discovered once I wasn't working and he was home with me that "sad" days were the days he had a break down - usually because soemthing unexpected happened or he was too overwhelmed. These brreak downs could go on for up to an hour. On the school holidays his kindy teacher asked us if we could pretend I was still going to work as he wouldn't settle at daycare if we got him there late or did things differently.

He rarely felt pain or cold or heat. So many time we were abused by doctors for letting him have tonsilites that was so bad but he wouldn't tell us his throat hurt. He had no concept of fear or danger. We took him to kindy gym and we used to have 3 people watching him on the tramp as he would run straight off the edge.

At 3 1/2 we had a discussion with his kindy teacher about pushing him forward into the prep program as he was in the first group of kids that were delayed a year as he was a december baby. This was probably the first time we realised there was a problem. She agreed his ability to retain facts was amazing. But he lacked social skills, he was emotionally immature. We struggled with this for so long. Our little boy was perfect. We was amazingly bright, yeah he was quirky but he was completely perfect. He excelled on the computer. Everyone thought he was amazingly bright unique gorgeous little boy. He never had tantrums like other kids did, shopping was a breeze - he never asked for anything or screamed or whinged for lollies at the counter. He would sit in the trolley talking, singing or playing with his train. Often he hung his head over the edge watching the wheels go round. We struggled as a lot of the typical parenting concepts didn't work. Reward charts didn't work, he rarely listened to our instructions. Time out was a waste of time, he loved it and often put himself there. he would sit and rock back and forth in the portacot making it bang against the wall. He didn't respond to changes in my facial expression or voice or the concept of consequences. But luckily maj of the time he was a good boy so this didn't pose all that much of a problem for us

We struggled when we went to Brisbane for holidays. He didn't eat with a knife and fork. he didn't eat much at all. He didn't like sweet things, couldn't lick an icecream. He "didn't do green things" His words were still dificult for most to understand. He talked incesently about his interest. The alphabet, Thomas whatever. He knew every Thomas train and could distinguish between all the blue ones - even those two twins Bill and Ben or whatever their names were. If we tried to do too much in a day or if things didn't go to plan he would have a huge breakdown. Sobbing, screaming breakdown. We told people he was just tried, it was a big change coming to Brisbane etc.

We moved to Townsville just before he turned 4. This is when the wheels fell off our wagon. He began having big meltdowns, kicking hitting, biting. He would scream whenever DH spoke to him and say "I don't like your voice". He watched videos repeatedly. We were at our wits end. He had no concept of personal space, he would often bump into people on purpose when we were shopping. He would "flap" his arms when he was stressed. And started repeating phrases from movies at odd times as part of converstaions. He would talk at people and we could rarely get a word in. Nothing was working with his behaviour. One time after he kicked me in the face, I smacked him. He laughed hysterically and told me to do it again. From that point he would kick and hit at me, trying to get me to hit him. When he started pre-prep we ran into more problems. He would spend up to an hour crying after something happened he wasn't prepared for. He was anxious and would panic about what was on his lunch each day. there were concerns about his pencil grip and fine motor skills. He drawings had little form and generally only used one colour. He enjoyed painting and painted mixed colours. He began acting out the scripts of cartoons or movies. He called it pretend mode. He didn't like playing with others as they didn't follow his script or his rules. By first term the teacher suggested we see someone. This was a relief to us as we were exhausted and didn't know what to do next.

That's about all I can do at the moment but if you want to know about our diagnosis I can post it another day

[lestyrox]

Wow Saram thank you for such a detailed look at your beautiful son's journey. He sounds like such an amazing little man and truly unique. I can understand that the last few years must have been very frustrating and hard for you, i can understand when you say that you assumed Xander was just like any other bub because he was your first and you had nothing else to go by. I have felt like this as well to some expent however Ethan has never had a problem reaching his physical milestones and has always been a very active little guy but with things like waving bye, building a tower etc i also had to 'teach' him to do that.
I find it interesting that looking back, there were things that you noticed were 'different' about Xander starting from when he was still inside you with the kicking to loud music thing. You are a very intune mummy!

By 2yrs of age he had developed obsessions. Wheels were a big one, locks were another. I actually made him a toy of padlocks and keys.

This sounds a lot like Ethan's obsessions, his were/are doors, lids, and plugs/sinks and flowers. For a while there Ethan was really obsessed with these things and would get pretty upset if i took them away but now that he's nearly three he seems to have melowed out a bit and i can tell him no and he'll be ok with that.

I was reading up on Aspergers/Autism last night and something i read stood out at me, i realised Ethan doesn't have interactive speech..yet anyway. He will tell me about his plugs, their size, colour etc but wont actually have a conversation. I really don't know if this is because he is just getting the hang of talking and will work up to that?? He does ask for things like rub my tummy, shower etc but he want say 'i want a shower' or i like my tummy rubbed etc.. its like he lacks that insight IYKWIM? Like if i say something like 'you're drinking milk, its yummy isn't it?" he'll say 'yummy milk' but i don't know if he's just repeating what i said or if he really thinks the milk is yummy. He doesn't ask questions either, but again i don't know if thats because he hasn't learnt to do that yet.

Ethan has never had a problem with change, textures, inappropriate reactions or things like that. He's always been affectionate and made eye contact. He will play with kids now and is really getting into imaginary play. He will look at what i'm pointing to and is good with non verbal communication- things that i've read some children within the spectrum can lack/have trouble with.

The things that do ring bells for me though are
his obsessions
delayed speech
not 'getting' things. Like in agroup situation where other kids might, for example, be doing actions to a song or actively participating in a story Ethan sort of doesn't 'get it'. He will just winge and want to go and play outside or play on the play equipment.

I guess there are a lot of varients within the Autism spectrum disorder and i guess Ethan could be perhaps on the higher funtioning end? Is it possible to be developmentally ok but just have some quirks? what i mean is can a kid just be quirky and be ok?
I know that sounds like i'm in denial but i just don't know what to think. Sometimes i watch Ethan playing and i think, he's absolutely fine, there's nothing wrong with him and then other times he'll do something or say something and i think hmmmm is that normal.

We went and checked out a day care round the corner from us today, i'm planning on starting Ethan there Friday next week. Just half a day a week to get him socialising with other kids and so i can get some study done. The staff seem great there and one of the carers specialises in speech delays so i feel confident sending him there. They seem very excepting of all kids and they have 2 kids there who are on the Austism spectrum (sorry if my terminology isn't right ) So that put my mind at ease a bit becasue i figure that if it does eventuate that Ethan is a little 'different' then at least the staff will know what to do and accommidate his quirkiness. I'm soooo nervous for him though, i wont be there to protect him. I'm so used to making excuses for him and sticking up for him, what i mean is i'm used to saying 'oh Ethan is just grizzly today, or Ethan is reeeeally into plugs, isn't that cute?' when he's around other kids and its obvious he's 'different'... like when he makes a beeline for the sinks wherever we go and pinches the plugs lol. I guess i'm worried that i wont be there to do that IYKWIM.

Anywho so sorry this post is so long. Thank you sooo much saram for sharing your journey with me, its really helped me understand things a bit better. Thanks so much also for pming me those scales. I think Ethan is a little young for them as they seemed more suited to school ages kids but they were helpful and i really appreciate your help.

Fingers crossed Ethan goes well at his first day at day care next week. I'll let you know what happens!

[~Saram~]

Lestyrox - i think our story is a little different as Xander was different from the get go. We have a very strong family history ofautism on DH's side with 3 kids now on the spectrum and another one (2yrs old) showing traits.

Waving goodbye - yep never really got that. Even today DS will rarely acknowledge someone saying hello or goodbye - but at times I really admire him as he really doesn't care what others think about him (most of the time anyway) god I would love to have that self-confidence :-) He is happy in his world and that's the main thing.

Autism is so difficult because the kids are all so different. I would love to hear some of the other mums tell their story cause they would probably be so different yet have some similarities. As for being "quirky" and OK - absolutely there are a lot of people who have autistic tendencies but not enough to be on the spectrum. My gosh I think we all have a few tendencies don't we. DH and I often joke about how 'autistic' we are and no wonder Xander is the super kid he is with us as his genetic blueprints :-) I guess it's really a waiting game for you to see if he needs help as he goes along. I would stay in close contact with the daycare - be upfront about your suspicions so they feel open in discussing any issues with you. Early intervention has the best outcomes for these gorgeous kids so it's good to get help early as things present themselves.

I know just what you mean about not being there. It's hard to let these little ones go off on their own but good too as they have to learn there own ways of coping and interacting in the world - even if it isn't the way we would do things. I found it interesting when we had some professionals point out how much I protected Xander from changes/differences and people just out of mummy instinct. Had to take some BIG steps back so we could let xander find his own feet and work on his issues :-)

wishing you all the best - hope daycare goes well

[MantaRay]

Thanks Christy. I hope you are doing ok - I can totally understand you not wanting to drive for a while

Thanks Sarah. The thing is, I'm still a bit torn about whether getting a diagnosis is a good thing or a bad thing. I still have in my mind that Christy was told M was quirky at this stage and that it wasn't Aspergers, which it now seems to be. But J is really different to M. And different to X by the sounds of it - we don't have the tanties and it really isn't just because I manage it. DS2 tanties and I can see they are totally different in the way they react to things. I think there is just so much overlap between being "bright" and being "autistic" that in many cases a diagnosis is very subjective, and J doesn't quite fit. I know having funding for an aide at school would be a plus, but then he's labelled so it's good and bad at the same time. Either way, we are going to struggle with schooling and may have to seriously consider home schooling. But one thing at a time, I'll wait to get the final results. The OT assessment in a fortnight should give us many more answers.

LR, I know how it feels Our story is similar to yours, but different. But I well know that indecision about whether it's worth pursuing assessments etc. I hope you are able to find the answers you want.