My view of HFA vs AS

I've 4 children who are on the Autism continuum. My children who are Autistic are left handed and the 2 two who are Asperger's are right handed. This is not how I'm deciphering them from each other but perhaps a coincidental observation.

My experience from my own children has been...

The biggest difference that I find is my Asperger kids try to control their world and my Autistic kids try to avoid it.

Owen is definitely an Asperger's although at 2 he doesn't speak and not offically diagnosed. His speech delay is different from his nonverbal autistic sister, Ruby, in that he has motor planning issues. Ruby gets frustrated by having to engage and Owen gets frustrated by not being in control.

There are also coordination differences and Owen and Penny, the asperger's kids, could very well qualify for Nonverbal Learning Disability (NVLD). Penny is harsher, bossier and loves symbols letters, she will meticulously brush her teeth and would be terribly upset if something stood in her way. Evie eventhough older is quieter, kinder, she has difficulty with follow through like brushing her teeth even when prompted.

To me, HFA vs AS is the same, in extremes. But opposite; like living with atheists and evangelists. And, effects how each approaches the world.

Bee Smart my Baby Bumblebee

I had the very expensive eventhough used... Baby Bumblebee videos arrive today. Owen shows some interest in them; Ruby on the hand has no interest in them at all. DH has no idea of the market price of these videos and I have no intention of telling him.

So, who knows how they'll work out. Maybe, I'll be able to figure out an ABA type activity to do with them.

I do admit, I had hoped to be able to just put in a DVD and fix the speech problems on Bumblebee autopilot while I enjoyed a coffee... and some donuts...a massage... Oh well, the pitfalls of eternal optimism and the attempt at easy... I'm sure if search ebay some more I can find something else if I type in "Autism".

My Sonny Boy

Well I had to post this pic of Owen to my blog. Partly because it's been seldom to get such a good shot. Part to due to camera speed lagtime, the perpetual mess around the house and on the children's faces, and him being in the photoegenic "mood".

He's being doing pretty good today and he's been doing welll with at least referencing me; I'm uncertain if it's because of my goodlooks, charming personality, or he's hoping to hit me up for a premature cookie loan. Anyhow he's been trying to make some sounds like "t..t..t" for tickle, "rah" for ROOOARR! and "dah" for boo.

Anyhow, Owen will be 2 next month and my oldest ds, Lewis, will 18 yo... 11 days after. My other ds, Henry, will be 15 yo this year, which really isn't significant but I should include him to give a full idea of the family picture. Three boys and three girls. I hold at least some hope for myself that "I won't make the same mistakes in the next 16".

Fly me to the moon....

I have been taking Ruby to the church on Tuesday and Thursday mornings to familiarize her with the surroundings.

We currently don’t go out much with her because she meltdowns so easily. This a huge transition and step outside the literal house “box”. I wouldn’t even dream of stepping foot into someone else’s home with her partly because of the emotional toll to her, the impact on the home owners and their belongings, and my own nerves with trying to keep an eye on her. I don‘t think I‘d even be able to form a coherent sentence for the visit.

So anyhow, she has gotten somewhat better with new place meltdown issues and she has less pica/ oral seeking than she did 6 months ago but we’re not in the “green” yet. Usually me and her dad do caregiver tag team with her. Although we’ve applied for respite for her no one’s has put up their hand in 10 months and I have very very few, ok no people, whom I can trust with her safety and if knowing all of her ASD details would likely not take on the liability.

Our usual stomping grounds, have been home, daycare, and an intermittent shopping trip for quick amenities like milk or diapers and the park. So adding church is feeling like wearing moon boots for everyone involved her, me, and the church ppl. “Houston we have take off.”

Down the Rabbit Hole

When we learned of autism we suddenly seemed propelled on a rollercoaster rocket ride into a land that we never even considered. Perhaps, it’s how Alice felt when she fell down the rabbit hole.
It’s funny now how something so obvious we didn’t see until the time of Ruby‘s autism diagnosis.

It has taken some huge learning curves to adapt to our new environment. Weighted vests, picture exchange and things like finding out the that “up “ isn’t “up”. Even manoeuvring the politics within autism. Politics you say? Yeah that‘s likely another post.

The hardest part is negotiating both worlds at the same time neither seems to adapt to the other very well and I'm the gatekeeper often overpowered by some sort vacuum vortex that attempts to suck you in or blow you out of the way.

I wonder if I've been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same, the next question is 'Who in the world am I?' Ah, that's the great puzzle! ~Alice in Wonderland

Off to kindergarten in fall?

I'm in a bit of a dilemma with Ruby starting school in the fall. Our Developmental Pediatrician recommends she stay at daycare for the year but really doesn't have an intimate knowledge of Ruby or the daycare facility. She's also been practicing for a very long and some of her ideas I feel are outdated. The daycare facilty has none to little knowledge of autism and I continually need to explain stuff.

Ruby is non-verbal mod autistic and in my opinion she has at least a near average IQ but I'm her mother so don't hold me to it; it could be higher. She attends a regular daycare with an aide right now and will attend a regular kindergarten classroom with an aide if we send her. There are no "special ed" schools or segregated classrooms where we are... I'm thankful in some ways I don't have to make a decision on that issue.

Her program and assistance will be directed by the school resource (spec.ed) teacher (RT) and autism services team; they act as consultants to the school and RT. The RT sees no reason why my dd shouldn't start school and I saw no concern or flinching in his face; he went on to reassure me by telling me they just had another child who was non-verbal upon entry leave verbal and has gone to highschool (likely with assistance but I didn't ask).

Our resource consultant doesn't feel she's ready for school but I don't think Ruby will ever be actually ready or have an opportune time to start if I wait for "readiness". I've filled in the paperwork but admit I'm very nervous and it being a tremendous leap of faith. I can't say how I'll actually feel in 11th hour and hopefully the mid summer school conference will help make my decision.

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.

The Unexpected Tulip

Amidst the blades of grass, a tulip.
Not an awful dandelion or a beautiful rose.
Some would mow it down; Others would let it grow.