Last Day At School

Ainsley turns 3 on Sunday and in the birth-to-three world that means you're booted out of the system. Ainsley started receiving in home therapy from Boyer Children's Clinic when she was 4 months old. Just a bitty baby. Just 3 weeks prior to this picture being taken she had her first cranial reconstruction surgery. At that time we were working on just getting her to reach up and touch a toy. What else we worked on I can barely remember, those days were such a blur and seem so long ago.



Ainsley's progress has at times been slow and other times seemed almost miraculous. When I look at how far she's come I am overcome with pride. I know her therapists are too. We will miss them very much as Ainsley moves on, into the Seattle Public School system.

Earlier in the week the hospital called to say they wanted to bump from her surgery from November to Thursday. It would have been a very bad time since Steve has that game deadline looming over him but more importantly I didn't want Ainsley to miss her birthday celebration and last day of school. It was a hard decision but the right one and in the end they let us keep our November date and Ainsley got to have her day.


Ainsley in her last session with her with her physical therapist.


Standing with her "bum" against the wall like all the other kids. She only started to be able to do this a few months ago.


Walking the hall.

Singing happy birthday with the silly birthday hat and play cake.

Doing the motions to Itsy Bitsy Spider. Again this is new. Ususally she just watches. Way to go big girl!

Ainsley has a strong fear of costumes (Remember the Disneyland photos at the character breakfast?) but she is getting better about puppets. She loves the "Octopus, octopus swimming through the water...."song and tolerated it's "gulps".

Bubbles! Yea!

Ainsley picks the Foot Book.

And after months of therapy to teach up and down, reaches down to touch her feet with ease!

We brought mini-cupcakes and stickers for the group.

Daddy even came to visit for her last day and helped her taste the frosting. Her reaction? Still Yuck!

In appreciation of all the therapists and staff's hard work and dedication, and in honor of Ainsley who loves books, I put together a donation of books to start a story time library for the school for all the therapist and educators to use.

Ainsley's speech therapist came to say goodbye.

Ainsley just learned to use a marker (beyond making dots) so her occupational therapist brought a special birthday picture for her to color, that we will keep as a momento.

Our family resource coordinator came to wish Ainsley a Happy Birthday and say goodbye.

Saying goodbye at circle time for the last time. We will miss our friends and wish everyone well. We hope to hear from you.

Ainsley's teacher who saw Ainsley from simple play activities (like making a toy car go) during home-visits to full participation in class.

Ainsley got hugs from all the kids as we said our goodbyes. So sweet.

It was a full last day.

Caps

What does this have to do with Ainsley?







This


I started a cap recycling program with Aveda at my kids' school. Over the summer a lot of caps were collected. Before I could turn the caps in I had to pull out the non-qualifying caps such as metal lids, plastic pull rings, pennies etc. (You know people never follow instructions) . The gigantic bag of caps was taking up valuable space in my house while I tried to find the time to get them "donate-able". I wanted the kids to help so they could learn about doing their part to protect the environment. Last Friday they were having an all day play-date so I had 4 helpers plus Ainsley. I wish I could say they did it out of the goodness of their hearts but in reality I bribed them with, you bet, ...CANDY! I decided the best place to do this job was on the patio. So I got Ainsley into her walker so she could get a little PT in while we worked. Little did I realize that CAPS would be an excellent enticement to move. Not only did she LOVE it and walk across the patio multiple times to get to the caps but then she proceeded to KICK the caps. I almost wished I could keep all 20lbs of caps for therapy purposes because boy was she motivated by them!

Ainsley Officially Learns to Nod YES!

I've been working for months to teach Ainsley to nod yes and no (so has her speech therapist). She got no right away but yes has been slow to come. We've read Leslie Patricelli's "No No Yes Yes" over and over. I position her head moving it up and down for yes on each yes page (aka. patterning) and she nods her head no by herself most of the time. It's been effective. Over the last few days I've been able to get her to put her head down to indicate yes about 50% of the time after repeated requests. Today Ainsley had speech therapy and she did it at least half a dozen times. It was our last session and I guess Ainsley decided to really go out with a bang and show off for Jenny. My girl. Always surprises. Just yesterday I couldn't get her to nod yes that she wanted to get up from the snack table at school. Things can change just that quick. I'm going to give her some time to do it this way and feel the joy of being able to communicate her wishes (she's pretty pleased with herself) and then later we'll work on getting her to put the head back up afterward and maybe repeat the motion. But this will do for now. I can't believe my girl can now answer a yes or no question. If she wants to, that is.

Ear Infection, Flu Shots & More New Stuff

We've been sick. It happens every year a few weeks after school starts. It seemed like a very mild cold that has teased us by looking like it was going away just to flare up again (could be a secondary infection I suppose). Right when it seemed Ainsley'd kicked it for good it turned into an ear infection. She was grumpy and in a lot of pain but now she's had 3 doses of Amoxicillan and is back to her usual self. Still, we missed this whole week of school and she now has only one more week before she switches schools. Bummer!

After being at the doctor earlier in the day I was back in the afternoon for our previously scheduled flu shots. I had to pull some strings to get a this appointment because the flu shot appointments were booked out until late October. So there was NO way I was going to cancel even with an ear infection. Little miss was being quite a rascal for a sick disabled girl and was trying to climb out of her stroller, to hang with her big brother and sister, while we were in the waiting room. I was pretty impressed that she could get herself turned completely around inside the seat since there isn't a lot of room, especially given her size (37.5 lb and 37 3/4" tall). Of course this is BAD because now she will have to be strapped in to keep her safe. Ahhhh......to finally reach that point at age (almost) 3. Of course it's great!



Then today I was showing Ainsley how to draw lines with a marker. This is part of her fine motor therapy. We do it periodically but she had always just done forceful dots (bad for the marker and crayon tips) but today she actually made her first line and then she proceeded to create this "picture" all by herself with no help at all (I swear to God I did not help her hold the marker, position her hand in any way or anything). Very very cool miss Ainsley! Whatcha gonna do next?!


Making her first line.


This drawing she did all by herself.

Whew! We Did the IEP!

I freqently tell people about the amazing tracheostomy support group I belong to. The moms (and a few dads and guys) on there are amazing! I have learned SO much from them over the years that I've been a member. One thing is about navigating the IEP (Individualized Education Plan) process with a child with a trach. Until hearing it from them I didn't realize that the school system is legally is obligated to provide an eduction to attempt to catch kids with delays up to their peers (most trached kids will score as delayed in speech/communication), and for a child with a trach that means providing a one-on-one nurse to ensure their safety while they attend school. I'd heard terrible stories about how difficult it can be to get the services that your child needs and having a trach just complicates things. So I'd been expecting the process to be painful but it wasn't. Well, we were there for hours and didn't finish so I guess it wasn't 100% pain free, but it was mostly pain free.

Ainsley has been working with a birth-to-three center since she was 4 months old, receiving home-visit therapy. She started attending school there in the fall when she was not quite 2. They helped us start the process of switching to Seattle Public Schools and preparing us for the IEP back in May. Due to Ainsley's multiple special needs and what I'd heard I was very concerned that it might not work out well for us.

Today was the long awaited meeting. I had a list of goals prepared and the educator's IEP draft had almost all the same goals plus a few others. It's about 15 pages so I'll spare you the details but Ainsley will be receiving an hour a week of PT, an hour of speech and 1/2 hour of fine motor (less than the hour she does currently but in my mind the classroom activities will more than replace that). They even had the nurse present who they hired to cover 2 of the days (we're providing our own private duty nurse the other two days). And I LIKED him! (Yes it's a him.) He is going to come train at our home and shadow our nurse for a day before he cares for Ainsley alone. All in all it was GREAT! And I'm looking forward to the change. I think it's going to be good for Ainsley because they incorporate a lot of learning into the classroom environment and attending twice as often (4 days a week) is bound to increase her progress. We will miss the birth-to-three center and all it's wonderful dedicated staff, therapists and educators but I believe we're in good hands.

And she starts the day after her third birthday, October 19th! I feel a little sad about preparing for my baby girl to being going off into the world without me but that's the end goal of parenting, right?! It's going to be okay, right? Sure it will. Faith. Leap of....or something. Here we go...jump!

New Fine Motor Skill

It was just an ordinary night and I was in the living room with Ainsley. There were three Playmobil 123 people (slightly larger than the normal Playmobil and safe for little mouths) standing on the table. Sometimes I randomly ask Ainsley to do something just to see what she understands and can do. Often she surprises me. By now nothing should surprise me, but it did. I asked her to pick up the mommy to see if she could differentiate a woman, from a farmer, from a boy. She picked up the boy so I asked her to put the boy back on the table and darn if she didn't deliberately stand it up on it's feet rather than toss it on the table like you'd expect a 2 (almost 3) year old to do . This is no small accomplishment for a girl with fine motor skill challenges since it requires very precise placement of the figure onto its feet for balance. Very cool! What was almost more amazing was that she did it pretty quickly and easily. (She's moving a little quicker these days. Could it actually be the cod liver oil I started adding to her food again a week or so ago that is reported by some to improve brain function? I'm not convinced but am keeping that in the back of my mind and looking at the correlation in timing.) I got her to do it again and caught it on video but we are having technical difficulties at our house so I'll have to add it in after we're back up and running.

Good Things Come To Those Who Procrastinate

A friend and I recently had a conversation about taking/making time for our self's. I can hear all you moms out there snicker. Yes...this is a common challenge for moms. This friend has been feeling that she needs some time out with the girls WITHOUT talking about the kids. Those of you who are moms will know how unlikely that is. When moms get together the conversation inevitably always falls back to the kids. When she asked me what I like to do or want most I said to be alone and get organized. Not exactly as fun as a night out with the girls and surely a response that might leave one quizzically asking "Really?", but in all honesty it was the truth. When you live in a 1919 Craftsman Bungalow fixer-upper and lead as busy and complicated a life as I do it can become a necessity (to reorganize), especially if one is prone to procrastination and biting off more than one can chew, which I am. Even being a somewhat fly-by-the-seat-of-my-pants person I still require a certain amount of order in my life. And I just wouldn't enjoy sitting around having a drink with girlfriends when my mental state is scattered. I constantly feel the pull of what else I "should" be doing because I have so much to do. But I realized after talking with her that I really could make the time if I made it a priority.

So Monday after carpool (when the kids were at school and I had a nurse to watch Ainsley) I spent an hour and a half sitting alone in my car with a cup of coffee and my notebook getting organized instead of doing my usual Monday grocery shopping and errand running. It was wonderfully quiet at the park except for the occasional rustle of the leaves on the trees hinting at a change in the weather to come, the sun was warm and I was totally able to enjoy having this time completely to myself with no interruptions other than the occasional jogger who caught my attention. Oh, the blissful quiet that a mom seldom hears. It isn't the weekend at the beach alone that I crave but it'll have to do. I reviewed and updated my 6+ college ruled pages of to-do and projects lists, thought at length about how I could best organize my week to reduce stress and be more effective and mapped out Ainsley's therapy needs in the 4 areas of gross motor, fine motor, speech/language and feeding (specifics are, of course, yet to be outlined and....on my to-do list, ha ha). It was good! I feel better! I think I might even feel organized enough that (if I could get my husband to stop working so many hours) I could go out with a friend and maybe even enjoy it. Although I couldn't promise not to talk about my kids.

I'm sure all this makes me sound crazy. Perhaps I am but not everyone wants the same thing. I crave a certain amount of order. I'm a to-do list person. I love the satisfaction of crossing items off that list because I feel like things are getting done. If I sound perfectly organized, I'm NOT. I slip up a lot and that is why I sometimes need to regroup. The other big problem is that I can only usually get to half of what I intend to. Sometimes I will come across an old list after months and months and find that some of the items are STILL not done and not only that, I'd forgotten that they needed to be done. Since I was a kid I was always better at starting things than finishing them. But I try to change and that's what the do-do list does....It helps me keep on track.

Still, one person can only do so much. This week's to-do list is 1 1/2 pages long so I know there will be a lot of things that don't get done. One item on the list was to find out what happened to my order of "Childhood Apraxia" by Pam Marshalla. A friend recommended it (Ainsley doesn't have Apraxia but there aren't any books out there on how to get your trached child with a rare cerebellum issue to speak.) and I ordered it right away but became concerned when several back to school clothing orders (also on my to-do list) arrived even though they'd been ordered much later. But sometimes good things come to those who procrastinate. It arrived today so I can cross it off my list even though I didn't have to do anything. Yea! If only everything on my list was that easy.

Now if I can just find time to read it.