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.