Benefits, Risks... and surgery

Statistics are of course done for the broad spectrum of society and the risk is always deemed small when dealing with a population vs individual. Hence the stats are always in favour of the greater good or spread out enough not to elicit panic. They are done to concentrate benefits and waterdown negatives. Regardless the risk has to occur somewhere to someone.

It reminds me of Todd's surgeon who told him that there was only a 1% chance of brain damage during surgery. As if it was something very rare. Which may not be the case if you have the right variables. Like a poor surgeon, or one that frequently stays up to late. To get a 1% you could just as well have 90/100 doctors getting 0% complications in 100 surgeries and you could have the other 10/100 very shoddy doctors performing the same 100 procedures and screwing up 10 each but if you choose the wrong surgeon you've increased your chances to 10%.

Regardless, if they do a million procedures there's still
10, 000 ppl that end up with brain damage. I think that would justify caution and knowing your risks and knowing how late your surgeon went to bed the night before.

No Aide today...

I'm really cheesed at our Resource Consultant she is the person who oversees the educational aides. The preschool where Owen is can't take him for anymore hours because staff needs to monitor him and they don't have enough staff. It's a regular preschool one teacher to 7 students.

Well, anyhow I asked about an aide and the RC said she'd put him on the waitlist in a tone like she didn't want to and went on about funding. She said not to count on one because they have kids who are more disabled than him waiting for an aide who've things like feeding tubes. Those were her words.
Owen is non verbal and has severe apraxia, dyspraxia and I know he has autism but right now he's dx'd as possible asd. In speech therapy we're working on pointing and looking at the person. He is waitlisted for the Augmentative Communication Team because the Speech Therapist has such trouble getting his attention and his sounds are so few.

Developmentally he's way behind in every milestone except gross motor and then he's on the go climbing and such and doesn't participate action songs or play with peers. He also bites objects and occasionally people and frequenlty pulls on other children's clothes. But, he is smiley and for the most amicable.

Im PO'd that she could determine who is disabled enough to get an EA and that because someone has a physical disability they're more disabled my ds can't feed himself properly either and needs soemone to hold the cup for him he doesn't/can't help put on his coat or clothes. He doesn't draw pictures or know how to use scissors or even safely use a pencil.

I'm not begrudging some else's disability but I was completely insulted that she brought it into the equation like I should just be happy with what I was getting for free from the government program. She just minimized us and she's supposed to be working for him because he's not a kid in a wheelchair or physically blind he's somehow less entitled eventhough he qualifies as being disabled.

Augmented communication

Both Owen and Ruby has been referred to Augmented Communication Team at the speech department. Which is disheartening because the speech therapist is planning for worst case scenario. Hopefully, by the time they get called they won't need it.

Ruby's issues are definitely related to autism. She makes alot of varying vocalizations but is unable to consistently mimick or respond with spoken communication.

Owen on the other hand at 22 mths is waiting for ADOS autism testing in 5 mths. He has delays in all areas (play, social, receptive, expressive, articulation, phonetics) and is suspected of autism. He has just been put on the provincial Intensive Behaviour Intervention IBI waitlist.

Ruby is already on the same list and has been for over 10 mths. Many of the "professionals" feel that she won't ever see IBI eventhough the cutoff time is over 2 years away.

Some of the issues with Owen are apraxia (oral motor planning/coordination) and dyspraxia (gross and fine motor planning). He's unable to stick out his tongue or make mmm or "O"and it's difficult to determine yet whether it's more apraxia or ASD issues. He's a happy and lively guy despite only being able to make a couple of sounds.

We've been working on helping him point and clap; he's occasionally now clapping when prompted and needs help to point he just can't seem to figure out how to get those fingers moving the right way.

So they're both getting onto the PECS picture exchange program and Owen's working on gestures as well and Ruby on referencing and requesting. As well as being waitlisted for computerized communication training.

Indecisive of blog topics or themes

I'm not really looking at this blog to be just about autism or kids or anything. I know as soon I try to limit it it'll become boring to me and an obligation which is essentially work.

It might have alot of autism in it since it's so pervasive in our lives. But, I don't want to restrict it to only dealing with those issues. So, expect to see some hodge podge here and there.

Over a year...

Wow! what a change in life since I wrote my first silly blog post. For over a year I've been off-kilter with dd's autism diagnosis and Dh's car accident.

Last spring I stopped going to church. It also put me off my daily 5 km's and eating right. I had lost 30 pounds and have liely regained 40. OY!

This weekend was the first time in almost year that I actually felt some freedom and likely just snapped a neuron and went silly which felt great. I somewhat feared I'd suffered a mild stroke but I'm still here.

I bit the bullet and headed out to church this morning with my oldest dd and boy was she glad to get there. I was worried like a phone call you haven't returned in to long that my return would be awkward since I just kinda disappeared. But, I knew I needed to get our life back regardless of autism and to hide in fear was far more of a toll than just doing it.

I was so glad I went. Rev.T . always has great sermons that touch me and give me something to think about. Today he spoke about God's abundance and how we each have something abundant to give. Perhaps, it's a talent or helping or things or laughter. But, the point was that too often we give to others what's only left over instead of celebrating that God's given us an abundance of our talents and we should give off the top with the knowledge and confidence that there's alot more that's coming in.

Sunday School: I have decided I would like for my non-verbal autisitc dd to start attending church with me and my other 2 dd's; instead of her staying at home with DH. She has made some changes over the past year and naturally matured that I think (and hope) it's a step she's ready to take.

I'm kind of nervous because there aren't ppl with mental disabilities there. We go to a rural farming church which is essentially the town's community center. I spoke to the Rev. today and set up to bring her in throughout the weekdays to allow her to adjust to the surroundings; when I'm going past to take her to preschool. He expressed enthusiasm about her coming and that perhaps they'd all learn something too.

She's also going to jr. kindergarten in the fall and will be in a mainstream JK. Many of the children at the church will get know her before she attends school and also go to the same school.

The preschool sunday school teacher has an early childhood diploma so that's a bit reassuring and I know I'd have to provide her with direct one-one support. But, I'm excited too about including her in the community. I guess I'm feeling it's a big leap of faith; exciting but scary.