Dystonia

Lately Elizabeth's dsytonic movements seem to be at a high. I really think she must be growing because she is a bit agitated, very restless, awkward and she often is mentioning pain in her legs. Lately I see more dystonia than ataxia; when she holds my hand when we walk there is a constant twitch/pull and her left arm is up when she walks. I see the pull it has on her body and I fear when she gets older what damage her spine will have due to her twisting when she moves.

Her movements are uncontrolled causing lots of spills, dropping her utensils and knocking things off the table. She very often unintentionally hits whoever is close to her with her flying arms. Most often we say oh well and keep going, we do try to get her to be aware of her space, remind her to pay attention to what she is doing and we are calm as it is not completely her fault that these things happen.

But on days where I am in a rush to get out for work or an appointment I am not as calm because I don't have time to deal with a big spill and a complete change in clothes. This week after drowning me in grape juice in my freshly ironed outfit for work she knocked another drink over and soiled her clothing. I cringe now for how I yelled at her and made her sit on the stairs while she sobbed and wretched up her breakfast. I hate that I was so angry at her because of something she cannot control. It also makes me wonder how others respond to these accidents as I have heard some comments from school about her movements. I can see how children can get frustrated with her as always knocks over the game we are playing with her flying arms and legs.

I just don't know how much ownership we need to give Elizabeth with her accidents. She does help to clean up her mess but a fair amount of these accidents would not occur if she were to pay attention. We have tried to minimize her accidents with appropriate seating and non-slip mats. I know I cannot scream at her like I did and I don't want to punish her but she is 6 now and I don't know if she does need some ownership for her accidents.

Our Disney Vacation

We did it again; we took Elizabeth to Disney for her 3rd time. Once again we had a great time there, we walked our feet off through Magic Kingdom, Epcot, Animal Kingdom and Downtown Disney. As she is now 42 inches the choices of rides were more thrilling so Elizabeth tried out Thunder Mountain, Splash Mountain, Test Track, Dinosaur and my favourite Soarin. Her Daddy really enjoyed all the big people rides too. She continues to be fearless and the first ride she chose was the Haunted Mansion.

The parks were all very busy this time and we were thankful we had her wheelchair with us. Elizabeth has a very hard time walking in crowded areas, being bumped by people causes her to get into dystonic postures and fall and she is not quite able to change direction quickly if someone is in her way. Walking long distances is still not easy for her so using her chair in the big resort was very helpful. Elizabeth does not mind being in her chair at all, she often would pull the 'I'm tired card' so she didn't have to walk as we did encourage her to walk in less busy areas.

We used the 'special assistance pass' which allowed us to bypass many lines which was great as most line ups were 60-90 minutes wait. The staff made such a big deal of her greeting her and going out of their way to make her experience memorable.

Next time I do need to remember her FM unit as she has such a hard time hearing in noisy environments. I felt really bad as I knew she was missing quite a lot of the conversations and almost needs me as in interpreter in her ear if someone talked to her.

As we stayed outside of Disney we were able to enjoy time at the resort; we swam, went down water slides, played in the sand and at night watched movies and roasted marshmallows by the pool. Our villa had a kitchen so we made our meals and brought lunches which I prefer; one can only eat so much fast food, the line ups for food were also very long and it saved quite a bit of money.

Now we are back to a very cold climate and I don't think have been warm since leaving Orlando.

Dino Fest

You may not be able to tell by these pictures but we just came back from Orlando and a couple of days at the Disney parks. One of the highlights of Elizabeth 's trip was the plethora of dinosaurs she was able to find. A day at Animal Kingdom sent us on a scary fast ride on Dinosaur, digging for dino bones, twirling on a triceratops and walking though a dino forest. To top off our dino experience we had dinner at Dino-Cafe (Rainforest Cafe but with dinos) which was an amazing experience complete with meteor showers. Elizabeth also went to Build-A-Dino and with glee stuffed a t-rex who she has named Rexy. Rexy was not complete without a blow dry and dino underpants. More of our vacation to come.

Spring is Here

Spring is here and slowly beneath the melting snow we can see the tulips coming up. We engaged in one of our favourite spring activities, a trip to the maple syrup bush. As usual Elizabeth savoured and searched for every lick of the sweet syrup. The maple syrup of course was the best on the pancakes.

March break

 

Elizabeth had a great March Break. Things were pretty low key which was nice as we still have a pretty busy schedule. The weather was nice and we even got to go for a bike ride with her Triton bike. One of her highlights was going to a reptile play center and holding a tarantula called Mrs. Fuzzybottom. It still amazes me how fearless she is and how much she loves animals. She does still scream for Daddy if she sees a spider in her room but once we catch it she keeps it confined as her pet. She also enjoyed going accessory shopping which is her new trend, she chose lip gloss, a headband and sunglasses which she keeps in her pink purse (along with her Dinosaur).
We also celebrated her homecoming this week. It has been 6 years now since she has been home with us and we can't be any happier to have such a great kid. It is amazing that 6 years ago she came home like this.

Firsts

 
Elizabeth has had some pretty exciting first experiences which we are so happy about. She has had her first play date where a classmate invited her over to play. Elizabeth went to her friends house without me to play and had a pretty good time. I could tell she was pretty anxious as she almost chewed through her shirt she was scared by some of her friends toys (Buzz Light Year and Ken). This friend is a really sweet girl who always goes out of her way to help Elizabeth, she is the first in line to carry her backpack to me when I pick her up at school. Elizabeth also went to a classmates party on her own. Elizabeth has an epi-pen due to her nut allergy so it makes another reason to stay with her at parties but the parents who were both teachers had no concern with her nut allergy and were comfortable in using it if they had to. The mother running the party remarked how amazing all the girls were at helping Elizabeth on the stairs and watching out for her.
We are very lucky to have her in the school she is in the class is quite small and the families have all been so accepting. Over the past few months I am really noticing the social gap between her and her peers getting smaller and her interactions are much more appropriate and unprompted.
Another first here was Elizabeth's first bad word. It occurred while we were playing Doctor. Elizabeth was the Doctor, I was the Nurse and Daddy the patient Elizabeth while checking her patient directed the 'stupid nurse' to complete a task. The irony is I am a Nurse and so I took a bit of offense and sent her to her room. The patient had to leave the room for a chuckle.

The Dragon

 

 

Elizabeth is finishing up her yoga class at the children's treatment center where she receives her PT/OT/SLP services. This yoga class is a bit amusing as most of the children there are not zen like (Elizabeth may be the least zen like). It can get pretty wild and giggly but the instructor is calm and patient.

Elizabeth has really improved over the course of the group she can hold poses for longer and can get into her most favourite pose the dragon. The dragon is a great pose which she is really motivated to learn. To complete the dragon she must get into a high kneel and then go up on leg and maintain her balance. These steps are what we have been working in PT so she begin to get up to standing in a more mature pattern.

To practice her yoga at home we ordered these Yoga Pretzel cards they are a fun way work on strength and balance.

IEP's please don't hate me I am just a Mom

Hopefully we are now in the final draft of Elizabeth's IEP. In December we had Elizabeth's IPRC (Identification Placement and Review Committee) meeting and she was identified due to her physical disability and her hearing loss. An initial IEP was created by her SERT (Special Education Resource Teacher) and with Elizabeth's Hard of Hearing Itinerant Teacher. After consultation with some of my work colleagues it was felt to be a little 'slim'. Slim being only 2 goals; to interact with her peers appropriately (being aware of eye contact, cues etc) and saying 'please, thank you, would you' during social interactions.
Trying not to to react with my heart wanting to yell and scream 'after 6 years of intensive work learning to talk, walk, play, hear and learn and after sacrificing ourselves financially and emotionally you want her to say PLEASE and THANK YOU'? But I tactfully and with much research and returned the revised document which addressed areas that we work on at home and in her PT/OT therapy. As this is her SERT's first IEP regarding physical impairments she also sought expertise from the Principle and the Spec. Ed. Itinerant and we sat down to review the revised edition. I commend her SERT for being honest in stating that this was an area she was not used to and for seeking guidance but after frequent comments I still don't think she understands why we push Elizabeth so hard and we try to stay on top of things. Comments like 'having her under a microscope' and that she is following the SK gym curriculum without assistance drive me crazy. Is Elizabeth doing well at school 'yes' she is doing amazing and she is always improving but will she ever catch up physically 'no' and that's okay. We stopped a long time waiting for her to catch up but others still want us to go back to that painful time of trying to 'catch up'. With appropriate modifications to her environment she can try to keep up where her peers are but there also needs to be physical assistance and close supervision and that needs to be on her IEP (or in writing as her SERT says I like to have).
I left her school defeated I hate being talked to as 'the parent' when I am professionally one of them on my working days. I hate that the school staff think I am such a mean pushy mom who places her child under a microscope and makes them write everything down.
What I am thankful is for support in creating her new IEP and a much needed Safety Plan (thanks Krys) that the school now has in place. What I hope over time is the school understands why we work Elizabeth so hard and why we want the school to do the same and that I am an okay mom.

Our new friend the Orthodontist

We had our first trip to the Orthodontist to discuss Elizabeth's jaw. Since she was a baby people would often comment on her uncanny mouth and how she resembled Winston Churchill. Her under bite is so severe that when she bites down her bottom teeth completely cover her top teeth. Her Speech Pathologist wonders if some of her articulation difficulties are due to her under bite and Elizabeth's watchful dentist thought it was time we should meet Dr. F.
Of course Elizabeth was the youngest client in the office and was her usual chatty self asking the Dr. what his intentions were with her. He took one look in her mouth and pronounced her as his new friend. This new friendship (very expensive friendship) won't start until she is older and will include braces and surgery to align her jaw.
Dr. F mentioned to look out for her 6 year molars as they should come in soon which I think might be awhile as all her teeth come in very late. On the way home Elizabeth declared she had mouth pain and should stay home from school as her 6 year molars were coming in.
Once again the effects of her prematurity continue to pop up and reminds us this will be lifelong.

Birthday's

Since Elizabeth started school she has been the party girl. She has been invited to an endless string of parties which we are so happy about. She has been bowling, to a makeover party, to indoor playgrounds, a gymnastics party, Princess party and a jungle party. I have been with her for each party and it has been nice to see how she is interacting with other children and how they are interacting with her. Of course I still see a difference between her and her peers socially and she has yet to have a true friend at school but the children and their families are including her. At one party there was music playing Elizabeth and a little boy danced and he dipped her as they twirled around which was the sweetest thing to see.
We are looking forward to more parties, I just have to start saying no to the cake as I am not burning it off like the party girl.