Aspergers/Autism/Sensory Integration Chatter

[MantaRay]

Bx. I know how hard it is to take that first step to saying these things out loud. I hope you are able to get some answers.

Christy, that is fantastic news that Matilda has had this break through. Your patience is obviously paying off. I hope things continue to get easier for you

I'm yet again wondering if I'm doing the right thing with the assessments. I'm a little scared that just one week after sending in the questionnaire we have been given appointments - the full lot, paed, audiologist (which I am sure won't find anything), physio, OT and then the conference. The first two are booked for while we are overseas in May so I will have to try and change them on Monday. I wasn't expecting it to happen so quickly and now I'm worried by what that means - did he sound so bad from the forms? I am still having this internal dialogue about a fuzzy line between bright and ASD - I am beginning to think that there is so much cross-over it's impossible to tell where one end and the other starts. I was telling a friend who also works in IT about the assessments and he said that he believes he has ASD traits himself, as do most people he works for. So am I over-reacting and would we be better off not going through with this? I just don't know. It's so hard.

[Ambah]

Bx - Christy has given excellent advice there. I think the first stop would be an OT where they could assess and give you strategies to work on with DD. Goodluck hon.

Mel - thats a tough one hon... I guess you need to weigh up, are there any negative consequences of going through the assessments, and do they outweigh the positives?
FWIW, I'm sure the specialists are experienced with kids on the 'border' so to speak, so although he may have traits, he may not be given a diagnosis as such.
With the quick response after putting your forms through - I seriously doubt it was because they thought there was a severity of condition - they were probably just organised and efficient for once!

In my experience I guess I don't regret getting Aidyn assessed, as I wouldn't have known where to begin to help him in some of those problem areas. He is close to being borderline too, given that the first group of specialists didn't pick anything up - apart from delayed speech & some motor skills issues. And his speechie and psych have pointed out that he is very high functioning. But I'm so relieved we did get the diagnosis as we have been able to get help and direction in those areas he needs, and he is just thriving... doing so so much better. And I think *I* am doing a lot better. I don't feel so uncertain and stressed anymore, I'm relieved I have been able to get him the extra assistance he needs in those areas (speech, socialisation, behaviour, fine & gross motor)...

Oh, just want to share... Aidyn has always been behind on fine motor/drawing skills - he has been really only scribbling up until late last year.
Well yesterday he bought me home a picture from school... It was a person with a head, hair, with eyes (and pupils), ears, mouth, nose, and legs! He said it was me!! And there was a smaller version next to it, which he said was him! He did all of it by himself! I was (and still am!) so proud and excited...

[MantaRay]

Oh Ambah, that is absolutely fantastic. It sounds like he's going to really well with school this year.

Thanks for you advice hun.

[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

[christy]

oh maz hun... wanna talk? I'll PM you my number.

You are a fantastic mother, we ALL have these moments... especially when all we seem to be doing is trying to stop these moments from happening. I have found times when I have wanted to do the exact same thing to Matilda.. it happens. BUT you have done at least 20 things today to let him know you love him, I know it!

[Ambah]

Oh Maz, massive *hugs* honey.
Don't be too hard on yourself. Christy is right... we really all do have moments like this. I have lost it at Aidyn before in a similar way.
Its really really trying when your threshhold is constantly pushed like this... its so understandable that you couldn't cope with it for a moment there. Its just a horrible place to be in. We know you are doing your best babe, you are a fabulous mother!!!
I hope things are a little bit better for this evening... if not, I hope things calm down soon.
Huge massive hugs to you.

[christy]

Well girlie girls, how is everyone going?

We've been going to OT twice a week. I found it so extremely life changing for our house. It was so much of a confirmation that we are on the right track, we are going the right way and doing the best for Matilda. It was hard to watch for one session how hard she made Matilda work, but we are seeing benefits already. Its bloody expensive to go twice a week and do swimming classes without having the big diagnosis.... its $200/week. Man... I wish we had private health insurance before the diagnosis of SI. I guess we could try to get it before an ASD diagnosis, but even then, the gov $$ would help more.

This is our last week of twice a week though, *whew* KRudd's $$ we saved for OT is going far too quickly! We saved all of Matilda's $$ for OT expenses and swimming lessons, and this week it runs out. I thought we'd get at least 4 months out of it

[~Saram~]

Hi all, wow lots going on in the past few weeks with our gorgey kids!

Christy - Sounds like you found yourself an awesome OT! I always say OT saved us! Not just the difference in Xander but in the understanding of where he is coming from - it is my favourite place to be with him because he is "at home" What you need to do now is get to medicare and get your Autism specialist refunds organised. It is quite a lengthy process but basically you get about 80% back on OT. Pm me if you want details

Maz - we have all been there! How is it these kids know just what buttons to push that hurt us so much. hugs to you, hope things get better.

Wednesday - welcome to a place where you can feel normal at last, You can chat to us about everything you and your son are going through and we will understand just where you are at! As for blaming yourself and looking for reasons, don't. My SIL (her son and daughter also have asd) have done our fair share of beating ourselves up and searching for connections/causes etc but these kids are who they are and they are infinetely special and unique and although they experience things differently to us and drive us nuts what would the world be without them. There ar lots of famous people who have autism and have changed our world for the better. Something I am coming to terms with this year is not forcing my ideals on DS for example for the past 6 yrs I have pushed him to socialise but he doesn't like it and now I have come to terms with it and don't eel like I am neglecting him etc. What is great is if you can get together with other parents of kids with autism and the stress there is a lot less. Check out aspect for lots of insight into people with autism - really interesting to speak to people with autism and see how they percieve themselves and their diagnoisis.

Mantaray - you sound just like me when we started looking into assessment with DS. I was worried that they would turn around and say nothing is wrong I'm just a paranoid parent and I was worried that they would turn around and say - yes this is autism - and then where would we be. Argued constantly with DH about what difference it would make etc. Anyway on the other end of the stick now - I wouldn't have it any other way. Having the assessments done gives you insight into where you can help. Even if it turns out to be "traits of autism" "PDD" "sensory processing" it gives you somewhere to go and work on his issues and help him. I know it sounds harsh but you are better off to go in there and present the worst of the worst behaviours/experineces you have had because if you water it down now and he is classes as borderline or not on the spectrum and then things worsen later on you will not only have to repeat the whole process again but also you will have missed this vital time to work on social cues, OT fine and gross motor skills.

Hoobly - welcome. I agree with Christy and Ambah an OT is a great place to start to desensitise and if...if they pick up other sensory problems in the assessment well it's all the more info for you to help your daughter out of these situations. We are in a situation with a strong family history - SIL two kids are dx and our son is dx and I was recently talking to the OT about my DD quirks that are arising. she agreed with our family history it would be impossible for her not to have traits but having picked them up we can work on them with her. Don't forget also that autism in girls is much different to the stereotypical reactions and assessments we see in boys. Sue Larkey and Tony Atwood have done some assessments on this I believe and Christy would have some great first hand info on things to look for.

Well after all that gushing I don't really have the energy to write about Xander's school issues only to say blah blah blah. I hate school and I hate other kids who go to school

Gotta go sleep, keep well and stay positive

[~Saram~]

Thought this might cheer us all up as we all sound stressed out at the moment. What are some of the quirky/funny/literal things your kids have done.

Today I told Xander to take his shoe off and put his socks in the washing basket. So he took off one shoe and walked to the laundry, came back into his bedroom and took off the other shoe and then walked back to the laundry. When I asked him what he was doing he said you told me to take my shoe off and put it in the corner and then put my sock in the laundry basket - you only said shoe not shoes!

When we were doing his ped assessment the Dr told him to jump on the scales - so he did - jump, jump, jump

The other day DH and I were having a joke about lettered cupcakes spelling out Happy Birthday. DH said to DS you didn't have to "P" on the cake. To which DS cracked up - then abruptly stopped laughing and in all seriousness said " I don't get it"

There are so many other quirky things he has said that have us all in stitches, including him - I will try and think of some more.

[christy]

I just quit my job... I took one with less responsibillity closer to home so that I didn't have to think so much. Part of me is happy, its easier, and I'll get to train dogs again, but part of me is sad. I don't want to blame Matilda, but if my head wasn't on her all the time, I could do the other job happily.... I would never say it out loud.... but I'm sad about it too. It was nice being one of the top nurses in the country if only for 3 months...

[maz]

Christy honey......breath babe. As terrbile as this sounds......things may work out more then likely for the better now that your more in control of the in's and outs of Matilda's days.

I had this discussion withone of my friends who son is almost identical to Wilhelm. We both asked each other if we can remember our lives before the spectrum? If we can remember not to over annalyse everything, remember what it was like to be able to just go without having to preplan....remember just doing for us. I had a really good position with Westpac before I had NIkolaus.....I went to go back inot it when Wilhelm was 6 months old and his reaction to me going to the interview was more then enough for me to quit before I started. ....I lost myself somewere there for a few years.......and became this person today that I dont recognise anymore. Dont lose yourself hon..... still keep doing things for you and make sure that yo take time out for you.

I have a horribel start to the school year just horrible. I havent had the energy to post it in here....I felt very ashamed of myself for how I reacted. Wilhelm has started in a new Special needs class 2 times a week that the school has devised as of this year for SN kids...great idea BUT different and wilhelm knows whats different. He became very agressive and abusive physically. His teacher said he could bring his DS to school to which he knows I said no and he went balistic at me. I got down to his level to try and calm him down and he grabbed my plait , yanked me down and kicked me in the face twice before I could push him away ( I have now cut my hair cause of it ). He told me for the first time he hates me...not a word that is common from WIlhelm and I know he ment it because he has a very good understanding of words. I picked him up and threw him on the bed, told him I hated him back, slammed the door behind him then melted on my hallway floor and cried. All this on my birthday. THEN on the thursday this program is run the kids in it are ment to go down the street to buy food to make for lunch...WIlhelm had a spaz at school and kept yeling telling them NO. I spoke to his career and she let me in on a secret that would cost her, her job.

Last year they use to go down the street on a thursday (SN kids with career's)....Wilhelm loved it as they would stop at the bakery and share a bowl of wedges and get a drink. His career broke her leg and was off for 6 weeks...Wilhelm had started acting up and hitting Vy in this time...I never knew why...until now. The new career and her other career friends would order themselves coffee and make the SN kids sit at another table without givng them anything! Wilhelm told me he asked for something and was told to SIT and SHUT UP! Wilhlem doesnt lie...great trait of an autistic kid but OMG I started to cry. It explained so much! All the hard work we put into getting him down the street was shatted, I use to take him there and he hated it towards the end of last year..grrr...So lets just say when i get acertain 'Amanda' and Fran' in my clutches all hell is gonna break loose!

ANyway.....Wilhelm is much better these days...since Jed and I changed the boys room and have made a little lounge for them...big beanbag, his egg chair and the t.v and playstation facing away from their beds.

Sorry that I didnt post this before...its been hard even doing it now. OH and now I hear a little boy yelling for me...thanks girls

[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.

[NickyC]

Hi All. I am a newcomer to this site. I will first say that for the first hour I have spent shedding tears that I have held back for so long. I felt so intune with everything written here ... all your experiences are simillar in some way to mine and for once I dont feel alone. I dont feel like I am the only one facing the battle of having a son diagonsed with possibly aspergers. The paed wont give us a definate diagnosis as he thinks he may be borderline.

For many years I blamed myself ... maybe I created this ... If I had of been a better mum he may have been different. Its only through reading your stories I have realised I did the best I could given what I had.

My son Oscar is now 5 years old and has started prep. A month in now and I am starting to feel the crunch. He is such a loving and gentle child, very bright but struggles socially. His speech is delayed and after speaking to his teacher his motor skills arent that sharp either. But he can read already and loves mathematical things.

I watch him at school and its heart wrenching. You can see he wants friends but has no clue as to how to make them. He really tries he does ... its when you see that disappointment and that sadness in his gorgeous face you break into a million pieces. It takes everything in me to keep it together.

I dont know what to do really everyday is a struggle. He has his obsessions which can go on forever and loves routines. If only life could be so planned he would never falter.

Just want to say thank God that you are all here. I feel at home for a change ... there are people out there that know what I am going through. I have had a challenging week and crying and reading this forum has done the world of good.

You all are fabulous parents.

[~Saram~]

Christy - I'm so sorry you have had to put your job on hold! We are doing the same thing this year and to be honest it was driving me nuts but I'm getting a handle on it. The time will come when we can get back to where we want to be! Maz is right it is still important to do things for ourselves. As for your moment with Matilda, Xander says the same thing about being taken away or being "out of our family" and yet we haven't (that I can remember) mentioned something along these lines. Is it possible that rather being drawn on what you have said it's a common fear they share?

Maz - what you said about how much you change the way we do things to accommodate them is so true, I didn't even know I was doing it until Ds was diagnoised last year and DH and I were at each others throats all the time over routine issues DH refused to comply with. I have to say Xanny's dx was the best thing for our marriage in a long time! Now we work together on helping Xan cope and giving each other Xanny free time.

I am so sorry you have had such a crap start to the year. Wish there was more I could do for you.

MBP - welcome! keep a diary of all the behaviours etc you are noticing and are concerned about so when you get to your ped you are armed and prepared. Hope it all goes well and that you can find a daycare solution. We were very blessed in that our man took to daycare like a duck to water, they were a privately run centre and had a very good routine so Xander thrived. Perhaps rather then looking for a new place they could make some changes to their environment and routine to help him relax. Things like have a labeled drink bottle for him. Allow him to have a time out space. Use visual cueing systems and a visual routine/schdule for him to follow?

Nicky C - Welcome, I'm so pleased you are feeling at home, it's great to find people that understand where you are coming from isn';t it. Look forward to sharing the jurney with you.