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.
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!!!!!
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!
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.
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
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
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.
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.
...he now tells me he hates me and has been kicking and hitting me for the last few days.
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