Autism x 2 and Other Things . . . : It's only been 2.5 weeks, and so much has happened already! There's lots to update!

I know, long title. But so much has been going on with the kids and myself that I've been too tired to update! Overall, things are going really well. I think we're all finding our new "groove."

So let me try to organize this update with some subheadings. :)

Ryan and Summit Centre

Ryan just started his third full week at Summit Centre. It seems to be a good fit. Already we are seeing some great things:

He was afraid of the stairs at home because he'd had a bad fall. There is a big flight of stairs at SC to get in/out. They have been assisting Ryan to get more confident going up and down them. At first he had one person beside him and one helping from behind. NOW he goes both up and down the stairs confidently, holding the railing with one hand and a helper's hand on the other side. He's doing this at home, too!
Ryan is much more attentive to his name. This is one of the programs they are doing with him. They reinforce him if he makes eye contact when they call his name. I've noticed at home, when I call his name, even softly, he almost always looks over at me. That's a huge improvement!
He has waved hello and bye-bye a couple of times without physical prompts. This is another program they are doing, responding to greetings and farewells. He usually gives more of a high-five when you wave hello to him (but at least he almost always acknowledges it if you're close by). I have seen him do an independent bye-bye twice this week: once for me when I dropped him off at SC (he kind of did it as he was walking away--over his shoulder--too funny), and the other time, he waved bye-bye to Grandma from inside the van!
He is more interested in feeding himself. He will grab for the spoon if I take too long to feed him, and he tolerates hand-over-hand feeding assistance very well.
He is trying to communicate more. He is making much more eye contact with me. And the gestures . . . my goodness: reaching, patting, touching, signing "more," tapping his chest, rubbing his belly, etc. I don't know what most of these mean, but I know he's trying to tell me something!
He is responding to some commands well, too. "Sit down/on your bum" and "come here/come see Mama" are going especially well. He responds accurately most of the time. I know they are working on "stand up/sit down/come here" with him at Summit. At home, I think he's also catching on to "close it": he's always getting into cupboard and drawers, and I'd say about 60% of the time, he responds appropriately when I encourage him or give him a little prompt.

Unfortunately, we've had our challenges, too. Last week, they finished a lot of Ryan's baseline tests, and began putting together his first serious programming. On Thursday evening, he was a wreck when he got home. I believe I described him as "an overloaded, short-circuited little robot with a malfunction." He was stimming non-stop, and it was not "happy" or "excited" stimming. He was clearly dealing with anxiety and overstimulation and just could not soothe himself. He was running from living room to kitchen and back, repetitively, for almost an hour, squealing and humming and opening/closing his right hand (all at once). Then he sat down and wailed because he was exhausted, but nothing would settle him. He wouldn't eat well. He slapped at his ears, chest, and belly. He rocked on the floor. At his most overwhelmed, he stood in the middle of the living room and grimaced at me, tapping his head, then chest, then flapping his hands, then signalling for "more," then screaming in frustration. It was heartbreaking. Neither Rod nor I could figure out what he wanted, what he was so clearly trying to tell us. I almost started to cry (I'm getting weepy remembering how helpless I felt!). We tried everything: rocking chair, cuddles, lullabies, soothing massage, pressure, bottle, diaper change, leaving him alone, shutting off lights and TV (sensory overload?), and none of it worked. Finally, at 10:15 PM, Daddy loaded Ryan into the car and drove him around for about 20 minutes, until he fell asleep. We've never had to do that with any of our children before. It was so sad.

Ryan's next day was a bit rough, too, though thankfully not as bad. He had a fussy afternoon at SC (when he's usually "happy"), and did the running/squealing/right-hand-flapping for a half-hour straight when he got home. Then he sat on his little couch and flapped, rocked, and tapped a certain spot on the couch for another fifteen minutes. Eventually, although he still had fussy periods that evening, the stimming slowed, and he went to sleep by about 9:30.

The weekend was better (I think because he got a break). He was generally happy [x2e2xwwd 21nbvcxza--HEY, RYAN, GET AWAY FROM MY KEYBOARD!] and there was less self-regulatory stimming. I did notice that he started grinding his teeth again after he had stopped for a few months (ugh). Daddy also discovered that snuggling and pressure can help settle Ryan when he's tired and won't nap. Yesterday, he took Ryan in to our bed and laid him on his belly, with his head on a body pillow and the pillow going down his side. Then Rod laid next to him on his side, hugging his back, and draping a leg over Ryan's lower body. (I am writing this in detail because I don't want to forget how he did it. It worked well!) After about 15 or 20 minutes, Ryan fell asleep. I think I need to look into getting Ryan some weighted blankets (but they are expensive--grr). Some children with autism really benefit from them, and I think he'd be one of those children.

My First Parent-Therapist Meeting

So, today I went to my first official meeting with Ryan's senior therapist. Ideally, we'll do this at least once a month to discuss his progress, issues, programs, my questions, and yes, homework! This morning's meeting was quite intense because it was the first one, and I was shown how everything works. I saw Ryan's program binder which includes things like notes for staff that are specific to Ryan's needs and behaviours, his daily routine, and his actual programs and data they've started to collect. I can't remember everything we discussed today, but I'll try to give some details here before I forget it all! One overall theme is that Ryan's programs are very functional in nature. We need to get him doing the basics first: attention, imitation, and play skills. These are what his speech therapist from Children First calls "the pre-language fundamentals," and we have to get these mastered before we can do other learning. There is also a major focus on building daily living skills.

I guess here's as good a place as any for me to outline his homework (again, as much for myself as you!). It's all a carry-over of programs he's doing at SC into our home. Technically, we'll start formally doing and recording homework on October 1, but we can start practicing some of these items now. Tara (his senior therapist) said to aim for about 5 minutes of 3-4 of the skills each day; of course, more doesn't hurt, and less sometimes happens given life's interruptions (and don't we know that!).

Homework Programs

Tooth Brushing: Do this is the bathrrom, standing on a stool, at the sink (see 4.) Put a tiny dab of toothpaste on his brush. Touch it to his front teeth. He gets reinforcement as soon as he allows this. Then touch it to his front teeth again. Reinforce when he accepts the action. Only touch his teeth two times for now.
Signing "More": Pick an object/activity that he will strongly desire and will want to have "more." May need to have a second person doing elbow prompts from behind if he is not responding to the stimulus.
Pointing to Request: Offer him one object that he will strongly desire. He must touch--NOT grab--the item to receive it. When he reaches and touches with hand, form fingers into a point by folding down bottom three fingers on his hand.
Stepping up using a Stool: Do this in natural (incidental) situations, for example, washing hands at the sink, getting into the van [SC knows we are working on this strategy with Ryan's physiotherapist from Children First], etc. For using the sink, note that at SC they now only have to prompt him by having the stool in front of the sink, putting his hands on the edge of the sink, and turning on the water; however, we may have to backtrack a step or two at home, first.
Using a Spoon (independently): Of course, use natural opportunities (mealtimes). However, only hand-over-hand when the bowl is nearly empty, and then encourage Ryan to try and do the last few spoonfuls independently. (They have found at SC if they begin too early he becomes tired and loses interest. I see that at home, too.)

Some Other Programs Ryan has at SC

As previously mentioned, responding appropriately to greetings: wave hello/good-bye; responding to his name by making eye contact; responding appropriately to commands of "stand up"/"sit down"/"come here".
When a therapist points to an object and instructs him to do so, Ryan will pick up and hold that object for a few seconds.
When a therapist tells him to "give me" a specific object, he will hand it over.
Use a shape sorter toy properly. Put in at least three shapes correctly and with minimal prompting.
Use a chunky puzzle properly. Put in the three pieces correctly and with minimal prompting.
Scribble with a marker/pencil/crayon. He will pick it up when instructed and make at least one scribbled line on the paper. (He is doing this well already.)
Imitations/Gross Motor: clapping, rolling a ball, kicking a ball.
Participating in Circle: He only does the last 5 minutes of the two circle times a day. Eventually, this will be increased as his tolerance and comfort level increases. Most circle participation/actions are hand-over-hand prompted right now. Lots of reinforcement for sitting nicely and paying attention.
Language: This is interesting. During constructive play, they are simply monitoring and recording any sounds or vocalizations Ryan makes. Eventually, once we see what he can already do, we hope to shape those into some word approximations! They are also incorporating clear, simple language into every interaction with him, just like we have always done.

They also know not to push him too hard. They aware of the difficulties he had last week and are trying to make a good balance of "program time" and "down time" for Ryan.

I know there's probably more, but that's all I can remember for now. :)

My next meeting there is actually on Oct. 9, but that is going to be a joint team meeting between SC Staff and Children First staff, to sort out what speech, physio, and other services are going to look like for Ryan and to co-ordinate the programming between the two providers for consistency for Ryan. That is going to be interesting; I'm especially excited for them to make plans regarding the path for Ryan's speech therapy/communication.

I'll also start going in for 2 hours a month and the occasional half-day session starting in October, to follow Ryan and his therapists around and observe them in action. :)

Mommy's New Role at Summit Centre

Okay, I can announce this since I officially found out this morning: I'm the new Parent Representative on the Summit Centre's Board of Directors. Admittedly, a few weeks ago, I didn't even know they had a Board of Directors (well, never really though about it)! But then I was approached by some of the executive staff and asked if I'd consider volunteering for the position, since the current Parent Rep. has left. They felt I was a good candidate. I was flattered (but nervous), and took time to do some research into what is expected from a Board of Directors for a Non-Profit Organization. And yes, it's complicated, very full of legalities to consider, etc. But I also knew that I'd love to help out this organization that has done so much for my family, through therapy, teaching, counseling, groups, etc. Furthermore, it would give me more insight into how this organization works behind the scenes. Their only concern, since they know me pretty well now, was if I'd be comfortable "speaking up" at meetings (you know I'm introverted!). However, when it comes to my kids, I am growing in my confidence as a "voice" and an advocate for all 3 of them. If it affects my children, I will definitely speak up! So, I put in a resume and cover letter for them to peruse, and at their meeting on Thurdsay night, they voted me in!

I will be attending my first meeting as a Board Member (how official and daunting!) sometime in late October. First, I'll be meeting with the Executive Director of SC for an in-take orientation to the Board and how it runs, get a procedural binder, learn to interpret some financial statements, learn a bit about the other board members and their roles, etc. I got a quick briefing this morning when I paused to ask her about the Board's decision. :)

So this is another leap out of my comfort zone that I hadn't foreseen, but I'm excited about it! Being a parent with two young boys on opposing ends of the Autism Spectrum, I think I'll have some unique perceptions to add to the Board on behalf of the parents and students.

A Challenge!

At tonight's Summit Centre parents' group meeting, I brought up my mixed emotions about Autism and politically-correct ideas/terminology. There has been a lot of debate, online, about postings from Autism-related groups that are meant to be uplifting and inspiring, but there always seems to be people arguing over the language used/ideas presented. Here's one example: Is it okay to say, "My autistic child?" Should I instead say, "My child who lives with Autism/My child who has Autism?" I won't go into the details here, but we had a great discussion, and the SC's Clinical Director presented me with a challenge: Create a new slogan to boil down our feelings in to one catchy phrase that will overcome all the bickering over terminology and perceptions of the condition in the community of people who parent/care for/work with/advocate for those who have/live with Autism.

The general consensus we came to is this: If we fight amongst ourselves, no one benefits. As the famous saying goes, "Divided we fall." The only way we can bring about the best possible situations for our children is by staying united (in our little group, thankfully, we are). Now I have to come up with an exceptional slogan to embody these sentiments. The Clinical Director flattered me by calling me a "talented writer," but gave me this challenge in front of the group--"No pressure!"--and now I can't stop mulling it over. I did ask that she give me at least a few weeks. LOL

Andrea and Kevin/Meet the Teachers Night

On Thursday night, we had a "Meet the Teachers" ice cream social event at Andrea and Kevin's school. We went as a family. It was a good chance for their teachers to meet all five of us, and for us to meet them.

We talked to Kevin's teacher first. Kevin had said he wasn't going to talk to anyone and wouldn't point out his teacher, but when we got up to her, she was so sweet with him that he opened right up and started chatting away! When he had lost interest, we had a brief chat about how he's been doing. Overall, things are going okay. Academically, he's doing great. He enjoys the new structure. However, he does have anxiety almost every morning. He often gets upset and/or cries when I drop him off at school. Mrs. Boutros says she often has to calm his anxieties when he first arrives, and then the rest of the day is fine. Apparently, he's very afraid that grade 1 will be too hard and he can't do it! She keeps reminding him that he's been doing fine so far, and it always turns out to be a good day. I've been saying the same thing to him! We're not sure why he's so anxious in the mornings, but he usually settles in.

That particular day, Kevin had an incident of lashing out and calling classmates "stupid." She said she had talked with him, and I gave her a little more back story I heard Kevin confide in Andrea about the incident (someone had knocked him over, but he didn't see who did it).  I also explained how "stupid" is Kevin's word for any thing/person/situation that really frustrates or overwhelms him, and we're trying to eliminate it from his vocabulary and teach him other ways to vent his frustrations.

Mrs. Boutros thought Ryan was adorable, and tried to get his attention, but he was too excited by all the noise and activity around us: everyone was in the gym. :)

When we got to speak to Andrea's teacher, it was again Kevin who piped up first! Mrs. Ryckman started asking him if he knew her name (he didn't), but she reminded him about how they'd met before.  Then she told us that Andrea's had a "great start," she has "no concerns," she "enjoys having her in the class," and basically just to contact her anytime if we had questions. It was short and sweet.

I would say Andrea is managing her anxiety much better so far this year. She seems to have more close friends. Homework time is still a major challenge, and comes with frequent emotional meltdowns, but it's still an improvement from last year's nightly meltdowns. Andrea's also happy because her teacher won a subscription to an online math game program for the class, called Reflex Math,  so they get to go on the computers a lot for their math. And Andrea loves computer games! :)

Okay, I think that's all the update for now. I'll just sit back and take a breather after this marathon blog entry. ;)

Oh, wait . . .

The Summit Centre's Grounds

I did have a few pictures I've taken over the past week or so of SC's grounds. I think they are lovely. There is a large front lawn with gardens and trees and arbors and pathways. The building itself is historical; I believe it was once a convent/school. There is a metal sculpture of nuns and children on the front lawn. I can't explain it, but it just feels welcoming and homey to me. It's just turned from Summer to Fall, so the grounds aren't in their full summer glory, but lots of flowers are still in bloom.

I also wanted everyone to have a visual of this place where amazing things happen. :)