End of School and a Snake Necklace

It is totally bittersweet Elizabeth is done at her Preschool/JK. She has been at this school for the past 3 years and has played, learned, laughed and thrived in an environment that was perfect for her. I can't believe it was 3 years ago when I took her to see the school and then she was still crawling. Her teacher's now tell me they were really unsure how she would do as she was not walking but thankfully she did begin to walk 2 months before school started. Elizabeth was the first child to be integrated in their school and they accepted her for her not the difficulties she faced.
The small classes, interesting themes, additional French and art classes, how they celebrated Mother's day with a tea party and Father's day with a snack for Daddy before work and how they introduced academics in a fun way to learn. They always were interested in Elizabeth's well-being and every teacher knew her and encouraged her. The teacher's were very accepting of recommendations from her therapists, her fiddly FM unit and I loved that her teacher would even remove Elizabeth's AFO's to help her walk in high heels like the other kids.
Elizabeth celebrated the last of school at a picnic the school held. I think the highlight was the Reptile man that visited and brought all the things that Elizabeth loves. The snake necklace really made Elizabeth's day. We will miss her old school and the small safe environment they had but now back to big girl school and a new chapter in her life.

Dance Recital

Elizabeth had her end of year dance recital in her adaptive dance class. The class worked so hard practicing all the steps and Elizabeth remembered the movements quite well. Elizabeth really enjoyed her dance class, her favourite thing about her dance class is the attention she gets from her helpers. Elizabeth has 2 helpers that hold each hand so she can complete the steps with their support. Her helpers are the sweetest girls who adore Elizabeth and are teaching her so much. On the night of the dress rehearsal her helpers were waiting at the door for her and presented her with a card wishing her luck and coached her though all the steps and how to present herself on stage.
I did not get to see Elizabeth perform as I was backstage to help her and supervise the class but from what I heard she did great. Hearing the thunderous clapping from the audience was proof that the whole class was inspiring.

Fatigue

Elizabeth's Resource Teacher and I met to discuss her progress and her discharge. We were talking about Elizabeth's 'days' and how she fluctuates day to day for her need of physical support. Her teacher had said they often can know what day she is having if she brings her chair around in the classroom. On these days she often by the end of the morning has difficulty sitting on the floor so she will bring her chair during circle as well. Initially her classroom teacher would tell Elizabeth to put her chair back but after her Resource Teacher pointed out why she does this Elizabeth was allowed to keep her chair. This is a big change for Elizabeth as when she first started school she never sat down and then would be crying at home because her legs hurt. Her Resource Teacher has been a tremendous advocate for Elizabeth and we are grateful that she is aware of Elizabeth and her needs and can help others to be aware as well.
Now that it is warm outside and we are spending more time outside I notice she carries her chair around to play and help me in the garden. We really try to keep Elizabeth active and give her every opportunity to walk but after talking with her teacher I now know that I also to have be careful not to push her and give her legs a break.

Elizabeth is doing great with her new bike. We have bought her a Triton 3 wheeled bike/roadster and she is now flying on it. I love that I am actually getting exercise as I am running to chase her and keep her from danger. She loves riding it and is getting quite daring. The steering was tricky for her to figure out and in the beginning she smashing into everything and we kept having to pull her out of bushes and off peoples front yards. She is riding further on this bike and our goal is to ride to a nearby ice cream shop. Everywhere she rides people and kids stop by and say how cool her bike is, we met some little boys and they could not wait to try her bike, even though it was pink. We still have to modify it with a proper backrest so right now we used bungee cords to tie cushions on it so she can reach the peddles. We just have to find a basket so she can bring her dino's for a ride.

The big meeting (game)

We had our big meeting at Elizabeth's new school today. The meeting is to present Elizabeth's needs to the school where she will attend Senior Kindergarten, this is to let (or warn) the school what they need to prepare for the fall. Our biggest concerns are concerning; safety (during gym time, outside and in the halls), her needing assistance for changing her shoes and putting on her coat etc, a suitable/supportive chair for the classroom is available, having an FM unit available for her, the Itinerant for the Deaf assess her classroom and to provide support, having PT and OT consult and set the environment up for her needs and to ensure she is included in all activities to the best of her ability, equipping the bathroom for her independence (versa frame or grab bar) and ensuring her speech therapy is to continue.
We were lucky to have some of her therapists/teachers present at the meeting as they know her so well and are instrumental with the successes she has made. Her PT made it as apparent as she could that Elizabeth was not safe and requires close monitoring and equipment to maximize her potential but she is not able to outright say what she should receive (restrictions made by the organization CCAC that assesses her need for OT/PT). Her Speech Path on the other hand laid it out that Elizabeth has a moderate speech delay and should be getting the max 24 sessions.
The school staff that were present listened with interest and during the meeting seemed genuinely concerned with her needs and as they had met her they agreed with some of our concerns. Unfortunately the CCAC manager did not show up to the meeting as planned.
I thought things had gone well with the meeting until I asked when would we be hearing what services Elizabeth would be entitled to in the fall. Of course things became quiet and they said they would wait until the fall to put the paper work in for requests for service but she would recieve Speech therapy as requested by her SLP. I politely said I don't think this is the normal routine (I work for one of the agencies and know a bit more than the average parent)and will look into it tomorrow.
So tomorrow I will make some phone calls to find out the process and ensure things are ready the day she walks into her classroom. Waiting for the fall will not be an option. I am fairly aware that fall means maybe an October visit and then another month to order her chair and before we know it Christmas will come and she still will not have a chair. As for safety she is not safe at certain times and has to have support available when needed. I really hate playing this game, I try so hard to be nice and trusting and not get their backs up but now I have to be the pushy parent to get what she needs.

Art by Elizabeth

Pretty much daily Elizabeth brings home pictures she has drawn while at school. I can attest that at least 99% of her drawings are of dinosaurs of some sort. I do beg and plead with her to draw me a picture of a butterfly, flower or a person and she justs laughs at me. I do have to say her dinosaurs are getting pretty good now.

The Game

We have been busy preparing for the fall and all the changes that will occur. Elizabeth will be starting Senior Kindergarten (the school Superintendent has agreed with our decision to hold her back YIPPEE) and we would like to give my Mom a break from caring for Elizabeth so are trying to find a daycare for her to attend while I am at work. Elizabeth's big meeting with the school that she will be attending in the fall will be next month. This is one of the most important meetings; it will ensure Elizabeth gets the support she needs for entry into kindergarten and for her future schooling. To ensure she gets the most support that is available we must paint a picture of a child who relies on people and equipment to be independent and who is very unsafe (which is pretty true), we must make her appear very disabled. Elizabeth is in fact quite independent when changes are made to her environment to accommodate her. We will ask for the most services and support in hopes to get even picked up by PT and OT in the school (services here have taken a very big reduction).
In trying to find her daycare I am doing quite the opposite; centers that provide integration here are very limited which is very unfortunate. When explaining Elizabeth to the daycare I am calling I am not using all the labels she has been given which we will highlight at her school meeting. I tell the center she is a bit wobbly and may need a bit of support with some activities because if I do mention her labels I know I will get the 'I am sorry we cannot accommodate her' spiel. Once they meet her I hope they will she how determined she is and how she finds a way to keep up. I want them to meet her before they place judgment on her abilities by her labels. By omission and exaggeration I feel like I am being dishonest but I know this is how the game is played.
The Dr. Seuss game in the picture above is one of our favorites, it challenges Elizabeth with many gross motor tasks and before she completes the task she has to say 'I can do that' which of course she can but just with a bit of help.

SSSSteggie

Elizabeth now can say the 's' sound. She has been working very hard at speech therapy for at least the past year and now can say 's' unprompted. I love how she asks for her dinosaur steggie, she pronounces the 's' sound so well, it warms me each time I hear her. We are now working on her 'sh' sound which is coming along and she can now say it with prompting. Above is a picture which she took of one of her 'crew' as she calls them she also has a t-rex, triceratops and a pterodactyl. She totes these dino's everywhere she feeds them, talks to them and dresses them. She also loves to bring them to us each morning when she wakes, a roaring dinosaur in your ear at 6:00 is not my most favorite way to wake up but they are the closest thing we have to dolls here.

Confessions

I really try on our blog to emphasize all the amazing things that Elizabeth is doing because she wows us everyday but some days parenting Elizabeth is hard. It could be that Elizabeth is starting a growth spurt and I am sleep deprived because of her waking but I am finding myself short tempered with her. The things that she cannot control get under my skin and make me snap at her. She is very twitchy lately including in her sleep and her twitches include flailing limbs; her flailing knocks over drinks, sends cutlery flying, breaks things and leaves us in bruises. Her distractedness and impulsivity are pretty fierce right now and she needs constant reminders to pay attention to what she should be doing. I am constantly telling her to stop talking which kills me as we worked so hard to get her to talk but she often is too busy chatting to pay attention to where she is going and puts herself in danger. I hate to admit this but there are times when I want to walk without her because walking with her is still painfully slow. Because of her dystonic movements and her distraction walking with her feels like
I am in a funeral procession as we walk slowly to our destination.
I hate that I get upset with her because these are things that she cannot control. On a good day I try to teach her to be aware of others, slow down with her movements and think about what she is doing and we replay what she she should have done but on days like these I yell at her and put her on a time out which I hate. I constantly question myself am I being too critical, too short tempered and am I asking too much of her? I know I should be grateful of how far she has come along but sometimes I hate what her prematurity has done to her and how it has impacted our family.

Familymoon

We had a great familymoon in Holguin Cuba. It was our first tropical destination with Elizabeth and we all had a great time. Elizabeth loved swimming in the pool and the ocean. She was doing great at holding her breath while swimming so she could see all the tropical fish in the reef. Elizabeth LOVES the sand, she spent the first 10 minutes rubbing her hands in the sand thanking us for taking her to Cuba. Elizabeth also loves all living creatures and took great pleasure in chasing the lizards and toads, collecting starfish, sea urchins, shrimp and crabs and watching the bats fly at night. The food was great and Elizabeth ate like a champ; she devoured calamari, fish, soups, ice cream and slushy drinks. She made us so proud in the restaurants sitting so still, trying new foods and using her manners. We went on a excursion to swim with the dolphins and it was fabulous, Elizabeth loved petting the dolphins, getting kisses and watching the dolphin show. Each night Elizabeth took part in the children's mini-disco, the staff were great with her and she loved dancing and playing the games. We are happy to be home now and I love the fact I am not running her to bathroom every 5 minutes because she has drank half the pool and that we no longer have to use public toilets (that often do not have toilet seats) but we will miss the endless fresh seafood and the lovely warm sun. What better way to spend our honeymoon than with Elizabeth.