Aspergers/Autism/Sensory Integration Chatter #2

[olive]

carrying on from here:

Aspergers/Autism/Sensory Integration Chatter

[MantaRay]

Thanks everyone for the support for next week. I think I'll just take it one step at a time and try not to pre-empt what's going to happen.

Christy, I love that T-shirt idea - so true!

[christy]

Do you hit months or weeks that you just feel like you can't do it anymore?

I know we've had a lot on our plates, we've had heaps happen over the last 6 weeks or so. But today, not just today if I'm being totally honest, I'm over life. I can't cope with a 2.5 yr old whinging in my ear all day. Matilda needs some OT stuff done today, she's absolutely frantic, but I can't do it. I did my back in this week and it just decided today that was it... I can't even do up her seatbelt in the car at the moment.

I'm watching her cascade down today, and there is nothing IC an do about it, but get extremely angry and annoying with every little thing.... ARRRGGGHHHH

[MantaRay]

Christy. I wish I could do something to help you. I hope that you are able to relax tonight.

[~Saram~]

Eeek I thought our thread had disappeared! Mods could we please have a link from the closed thread to here?

Christy - yep having one of those weeks here - I am over it. even OT this week was unbearable - he is so loud and out of it!

Maz - ditto on the hubby being a PITA - Dh was the same here DS left for school in tears and came home in tears - what a crap day! In fact I think today is possibly the scariest day of my life. Today after getting home from school got DD out and she walked to our gate then Xanny bolted! We live on a very busy street and I had to throw Ari over the fence and got and chase him down the street - why because his shoes were uncomfortable. He also had a relief teacher today for half the day who again got upset with his calling out.

On the upside on the way to footy today Xander unravelled the relationship between multiplication and division and also started telling me what 4 groups of 5 was, 4 groups of 4 was and so on. He went to bed with the calculator :-)

To those of you had assessments today - hope they went well!

[MistyFying]

Saram - done

[MBP_Mum]

Appointment went really well, he read all results from school phyc, the report from speech the report from the kindy teacher and myself. He watched Korbin and talked to me for awhile and then started the assessment Within the first 15 to 20 mins into the assessment, he said. Korbin has autism.
He needs to be refered on to a team, for it to be confimed. So i have an appointment for the speech part of the team on the 29th June, now just waiting to hear back from the psychologist team, i have an appointment with the pead again next Friday, he has written a letter to the school saying the has assessed Korbin and he is saying he has autism but can not be fully diagnosed until he has seen the rest of the team. FINALLY i am getting somewhere.

[~Saram~]

MBP mum - that is great that you got some progress today! I remember the day we got DS diagnosis it was very bitter sweet. We were so relieved to have a reason but at the same time devasted that there was a reason. Hugs to you and your family and I hope the rest of the team meetings go as smoothly!

PS - thanks mistyfying :-)

[maz]

MBP - oh hon..what a weight to be lifted of your shoulders! Finally you know that you will ge the help you need.

Christy - hon.....yes itsone of those times in this house atm too....I have a super arrogant little so and so who had me so angry within 1/2 an hour of him bieng home that I got a head ache and started ranting like a fish wife. I hate it.....I hate when I jsut feel like going out the fornt doo rand not coming back . I hate that when you tell others they say...get some respite..yeah right so he can be a turd for 3 days after he comes home..i think NOT!

Sarah - oh no he's a runner..shiat that would just freak me out. Wilhelm has a little calculator here somewere that he takes to bed too......he went througha stage of putting a toy gun under his pillow cause 'they were going to get him' use to freak me out but if he couldnt find it he would hit himself in the head over and over.

Does anyone else find that the day before their kid gets sick they play up really badly? Wilhelm is just horrible 24 hours before hand......IM a *****, he hates me, Im fired, talk to the hand, im fat, im ugly its like he's a different person

[christy]

Frantic.... that is the pace M is at today. Frantic... I even made up a song about it this morning.

"No need to get frantic, to get frantic, to get frantic. No need to get frantic, its all okay."

I just can't seem to calm her down. I can't get her to breathe, I can't get her to be squashed.... brushed, compressions. I just see her on a one track way to meltdown land. She's had a frantic week, but today is bad. I just got her in a competition to see who could blow the longest, but its not helping, it turned into something to get frustrated over....

She's been obsessive about lollies and juice for the past week. Enough that we've had 3 massive meltdowns over the fact that I don't have lollies in my bag. Or that we don't have juice in our house. Things that we don't have at that time, or don't usually have. I never have lollies in my bag, I mean if I had lollies, I'd eat them all!!! I went to pick her up from school and she started screaming as soon as she saw me that she wanted a lolly. Then she wanted an ice block or juice. None of which were available at that time. So there was nothing I could do. She ran into the street screaming and laid on the ground. Then she came in with me (I was there to do teaching) and I wound up having to leave 20 minutes later with her kicking and screaming under my arm. My back went out.

[MBP_Mum]

Oh Christy, i have no words of wisdom or advice. As this is all new to me. But I just wnated to send you some huge hugs. ((HUGS))

[MantaRay]

Christy. I hope that it didn't escalate. You are so amazing with the way you cope with it all.

Tomorrow is supposed to be the start of the assessment process for us. J vomitted when he got to kindy this morning so is home sick today. I'm just hoping he's ok to go to the appointments tomorrow (paed and audiologist) as we really need some answers atm. After posting that some things have improved the other day, I have had to face the reality in the last few days that they really haven't. Toiletting has gone backwards again, and now we are facing a battle with kindy about his nose. And the kindy teacher got MIL on side this morning and now she's trying to tell us we are not doing enough - I am so angry. The issue is that he won't blow his nose when he needs to and the other kids are not wanting to go near him. The teacher thinks the solution is to insist that a doctor give us abs to clear up the nose. I totally disagree. Last time this happened I relented and after 4 weeks took him to the doctor for abs which didn't help at all. I can't give him abs everytime his nose runs FFS and more often than not it won't help anyway. The runny nose isn't the issue anyway - it's the behaviour, which is related to his other behavioural issues which we are getting him assessed for and she knows it. Why can't people understand that not all kids are the same and there isn't always a magic pill.

Did I mention that I am so angry? DH hung up on MIL earlier when she was going on about all the things we are doing wrong so it will be fun picking J up from their place later. I really admire you all for the way you cope with all the challenges in your lives. You are all truly amazing and special people.

[christy]

oh Mel your MIL is definately a mixed blessing thats for sure... .my MIL is pretty similar actually. She underminds Pete all the time and me, but I don't let her....

We don't cope all the time. Today I didn't.... M was frantic still and I took her to the OT and explained how horrible the last week was. She said "Its going to be a tough few weeks for you, but what we need to do is x, y, z" and I left and sat in the car and cried and cried. I just don't know if I have the strength to keep on for a few weeks. Both Pete and I are exhausted and yet we just have to cope.... not just cope, we have to be uber strong and able to be in control and help her.

I know we will get through it, I know its a matter of time and consistency, but I just don't know how its going to happen.

[MantaRay]

Christy. I really wish there was something I could do. It must be so overwhelming for you all.

[christy]

I know Mel, knowing I have support is amazing. I know that I'm not judged here which is fantastic.

I came home from OT a mess, and I think the girls picked up on it because they were pretty crazy but funny at the same time. The minute Pete got home, Matilda exploded again though. The OT has said the main thing we do differently over the next 7 days is have a NO SUGAR policy. So no lollies, juice, etc etc etc.... Now I'm pretty strict about food, and I really have a whole foods policy, so we don't have heaps of lollies in the house or anywhere. Matilda's been cracking it over sugar so the OT has said that M is using it to keep her in the frenzied state and we need to take it out of the equation.

So far she found a hidden barley sugar when she got home but now there is no sugar in the house. So we will have the withdrawals to go through next.... joy.

[MBP_Mum]

Wishing you all the very best Christy this week, with the no sugar policy, I'll be thinking of you. ((HUGS))

[MantaRay]

Well, the first assessments are over. Christy, I thought of you when the paed called him "quirky" - I wonder if it was the same one! We won't get full results until the OT and physio assessments have been done, but she did say she's anti-label, and with J's imaginative play and lack of tanties she would be reluctant to use the "Aspergers" word. However she said that school will be a big issue for him and that they will try to push to have him labelled as Aspergers.

Her initial comments were that he had advanced cognitive skills and below average adaptive skills (not by a lot though) and his gross motor skills are at the lower end of normal. Apparently having such a big difference between the level of cognitive skills and the level of adaptive skills is pretty difficult, so there are many challenges in managing that. She thinks we will have trouble finding the right school for him, and maintaining his happiness and emotional wellbeing through the school years, but that he should come out the other side as a well-functioning adult.

She thinks the OT assessment will be really interesting and will tell us a lot more.

I am so glad that DH was there. He feels so much better about things having heard her vocalise many of the things we have noticed, and assure us that he's not as far behind in some areas as we thought (and have been led to believe by kindy). All in all it's been worth doing so far. Hopefully the rest of the assessments will go well.

[MBP_Mum]

I have all my appointments booked I have another appointment with the pead this Friday, Autism speech assessment in 2nd July and the pshyc appointments are also in the first 2 weeks of July. Things are finally coming along nicely.
Lets just hope we get some answers soon.
These appointments aren't coming cheap. But thank god for private health. I can't believe private health does not cover peadatricians thou.

How is everyone else going??