Cassie's Favorite Activity riding at TEAD

MISSION STATEMENT:

“T.E.A.D. is dedicated to enhancing the quality of life for children and adults with disabilities through a unique form of proven therapy with the use of horses”

Since its inception in 1978, T.E.A.D. has provided thousands of individuals young and old with a different approach to their situation. Located in the rolling pastures of Mount Hope, T.E.A.D. is dedicated to enhancing the quality of life for children and adults with disabilities through equestrian therapy, a proven method in dealing with the challenges presented to them by their disabilities. We endeavour to fulfill our mission statement with honesty, integrity, and accountability, with which the professionalism and compassion of staff, instructors and volunteers empower our riders with disabilities to a level of riding that earns the respect of all involved at T.E.A.D.

Cassie riding her favorite horse Robin. Born in 1986 he is 23 years old. He is a Paint that stands 15.2 hands high. He has been a therapy horse since 2003 at TEAD and Cassie has ridden him for four years now.
One of the best parts about TEAD is the children make lasting friendships with other children with disabilities. Above is Katie, Ashyln and Cassie stretching their legs before the ride.

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Cassie with her riding instructor Pat Bullock and her three best friends at TEAD. Pat is an awesome instuctor who knows Cassie really well. Cassie has progressed this year to no side walker and time with no leader where she steers the horse herself as well as trotting and posting. All thanks to the dedication and hard work of Pat. Thanks for your time, expertise and patience with with Cassie.

I wrote this and read it at TEAD's Riding Forward Tours because we whole heartedly beleive in this program and want it to continue to operate as it is our daughters absolute favorite form of therapy.

Our daughter Cassandra developed a brain injury in utero. The right side of her brain was severely damaged. She was born with hydrocephalus a condition where cerebral spinal fluid builds up in the brain. She had numerous brain surgeries as a baby to place a shunt in her brain and drain fluid. She developed lots of life threatening complications and had numerous shunt surgeries. We were told right from the start that she was high risk for cerebral palsy and seizures. Cassie did not sit up at six months and never learned to crawl. Walking took years of rehabilitation with physiotherapy, orthotics, walkers and gait training. When she was very young we heard about TEAD. We filled out the paperwork and had her on the list to ride as soon as she was old enough.

TEAD is a special organization that values children and treats them all with dignity. Cassie has been riding for 5 ½ years now. The TEAD organization has helped her gain pride, self-esteem and confidence. The instructors know each child’s special needs emphasizing their strengths. Cassie loves the instructors so much that each week she runs to hug them. Her favorite horses are Champion and Robin. She is able to talk to the horse. She uses her voice to make these large animals follow her directions. It empowers her and gives her confidence. She has made friends with volunteers who she realizes are special helpers there to help her and make the riding session fun. She has made lasting friendships with other little girls who ride in her club. They all have health problems or disabilities and she is able to talk to them and they socialize and it makes her feel special to have these friends. Sometimes Cassie has had to face hard questions from children at school. The ask her why she walks funny or wears big leg braces or they ask her why she cant climb on play equipment or run fast. She has developed a nice way of talking about her strengths and often tells these children “But I ride horses really well”. She has taken videos of her riding to school for show and tell and the children were so impressed and she felt like a star! She loves the club so much she asked to have her sixth birthday in the clubhouse. She took her friends from school on a tour of the barn. They were so impressed and she was able to confidently tell them all about the program and what it means to her. Sometimes children with a physical disability have trouble doing sports or fitting in with their peers. TEAD has given our daughter confidence and helped her social skills.

Cassie has had to work hard over the years doing physiotherapy. TEAD is a fun way for her to do therapy. It involves using her mind to follow directions and keeping the horse moving which in turn helps retrain her injured brain. It also involves using her weak hand to hold the reigns and lead the horse. She uses her weak legs to walk-on trot and turn. It is full bodywork out for one hour each week. She comes off the horse tired and pleasantly exhilarated. She feels at home in this club and she loves the staff and the horses and other children. Cassie cant wait for this July when she will attend a full week in summer camp and we cant wait to see the things she learns and we really thank the club for helping Cassie live her dreams and build her confidence.

Support this wonderful club. They always need volunteers and it is one of the special places in the world!!

Mother's Day

Although I had to work a shift at the hospital, my mother's day was really nice. The girls made breakfast in bed and then said they were hungry and proceeded to eat my eggs! Nothing better than sharing breakfast in bed. Julia being a preteen said she started a card but did not finish it. (So teenagerish). Cassie had lots of homemade cards she was proud to give. The girls sang to the mother's at church and because I missed it Chris brought them to St Joe's and gave me a flower. It was nice to show the girls off to my work colleagues. Chris and the girls spent the afternoon with Oma. I felt bad all weekend that I could not drive to Dunnville to visit my mom. I called her twice and when I arrived home from work we were eating supper and my MOM walked in. What a great way to end the day. I love being a mother and I realize that my girls are growing up quickly!!

Getting Ready for Round Two of Botox

Cassie at McMaster Children's Hospital 2Q Clinic coming for an appointment to meet Tara her Child Life Worker.

The Botox appointment was moved to June 8, 2009 which was fine with me as it gives Cassie a little bit more preparation time with her child life worker Tara

The plan is to receive 4 needles (300 units). The muscles that will be injected are the gastrocs, add. hall, add. poll, pronator meres. I am not sure if I have the names exactly right but I am going to get an anatomy book and look them up. I am worried about the lack of physiotherapy available after the June 8 injections. Cassie's therapist at the after school clinic went off on maternity leave and one of the cost containment measures at CDRP was to not replace the therapist. This was one of the most valuable physiotherapy clinics Cassie ever participated in and I am extremely disappointed to not have access to it. Although it was only one hour a week it was the best program for Cassie. She loved working in the gym with the other children. She was motivated and loved the program. I wrote a letter asking them to reconsider but have not heard anything. I decided on my own to try to learn the muscles being injected with Botox and then I will ask the therapist to show me some exercises that will help these muscles strengthen. Cassie already has exercise equipment in our basement. I may try to find a physio student or a kinesology student and see if they wan to work on some of our home exercise programs with a very cute little girl.Cassie took Sarah doll in to see Tara today. They started an IV and gave Sarah blue and green sleepy medicine. Cassie has walked through the entire procedure of having an IV start. We have come up with lots of strategies for the big day. Here are the few most important ones.
1. Ativan the night before to help her sleep
2. Ativan the morning of the appointment
3. Don't mention the appointment until we head out in the car.
4. Emla patch on 45 minutes before the poke.
5. Bring Walkman with Hannah Montana Music for a listening distraction
6. Sit on Mommy's lap during the IV start with Tara "Safe person in the hospital standing by to tell the nurses all Cassie's strategies.
7. Look away during the poke. Mommy to do the imagery breathing techniques learned with Cassie.
8. Mommy has a special never before heard story as a distraction during the rough periods.
9. Next visit to hospital Tara to take Cassie to the clinic room to look around
10. Cassie to have access to her own special girl band aids.
11. Wake up time. Nice drink and TV to watch with roommate.
12. Internist will consider need for oral Medazolam that helps erase memory but this may not be necessary this time we will see.

Stay tuned to see how the strategies empowered Cassie and help to decrease her fears and assist her to deal with a painful sensation. I am confident the plan will make things easier on her.

School System Resource Meeting

The Focus for me this month has been How to Help Cassie Succeed at School. Therefore I have not had too much time for the Blog.
I am very pleased to report the school meeting went extremely well. The purpose of the meeting was to discuss Cassie's academic progress and implement measures to ensure her success. The Principal Catherine Youngblud is really terrific and knows so much about how to ensure success at school. She understands the complex issues involved with Cassie and knows how to navigate well through the education system. Cassie's OT Joanne Doherty attended as well as Mr. Moase (teacher), Mrs. McIntosh(EA), Mrs. Holloway (Resource teacher) and myself. Joanne recommended Cassie use assistive technology. Her fine motor is weak in printing and cutting although she has made improvements. A computer should be Incorporated into her program. The teachers had samples of Cassie's printing and the OT felt the legibility was good. The printing takes allot of time for Cassie and slows her down somewhat. It was recommended that Cassie use her programs Clicker 5 a few times a week in the computer lab. The Clicker 5 program is board approved and helps children write independently? The EA's will no longer be scribing for Cassie.

Clicker is a writing-support tool for any subject area.The program helps a child build sentences by selecting words, phrases and pictures. Cassie finds it useful to hear words spoken by realistic software speech before she writes and Cassie can hear completed sentences spoken back to her. The program is powerful, versatile and easy to use. I love it because it is supported by hundreds of free teaching resources at LearningGrids.com!

Here is a little bit more about the tool!!

The Clicker 5 Guide

1. What is Clicker?

Clicker is a writing support and multimedia tool for children of all abilities.

At the top of the screen is a word processor called ‘Clicker Writer’.

At the bottom of the screen is the ‘Clicker Grid’.

This has ‘cells’ containing letters, words or phrases that you can click on, to send them into Clicker Writer – so children can write sentences without actually writing or using the keyboard! This is a very good program for a little girl with memory problems and complex learning difficulties.

Funding continues to be a big problem for schools in the area of computer availability in classrooms. I was surprised to hear Cassie's classroom has no computer or outlets available for computer hook up. What a shame but funding money is allocated carefully by the principal and Fessenden is an old school.

Cassie has been supported by her OT Julia Lockhart at CDRP and has worked hard to learn to type. Julia made Cassie a color coded one handed typing program. We notice when Cassie tries to type two handed the weak left hand slows her down and her concentration comes off her sentence building to concentrate on getting the weak hand to type. I am pleased about the easier one handed typing and allowing Cassie freedom to work on her school work. When Cassie reaches a certain skill level then Julia will apply for funding for a lap top for Cassie. This will be so helpful for ensuring success in her school life!! I can't wait actually to have access to her own laptop that I can fill full of tools she needs to be independent. Cassie may have some weaker skills in grade 2 but already she is developing some awesome skills that other grade 2 children don't have. I think being a strong key boarder will certainly assist her academically.

A Few other terrific ideas came out of the meeting. Everyone agreed how hard Cassie works. Although she is not at a grade 2 level on her IEP she is continually making progress. Cassie's math is improving. She does well with a number line. She is beginning to pick up regrouping. Cassie is at a DRA level of 2B. She requires consistency to be successful. Catherine suggested she try some taped books from the library. The main points that I loved from Catherine were: Cassie needs to be a risk taker, try to empower her, independence and initiative are very important and keeping the school experience positive. It was recommended that Cassie be in a split 2/3 class next year so she has more time to keep working at a grade 2 level if she needs. I love these strategies and I am so excited to see Cassie's progress!!I recommend to parents to attend meetings. The brain storming is invaluable. The expertise of each part of the school team coming together for ideas will surely help ensure Cassie makes academic progress. I had a list of ten issues on a paper I wanted to address and interestingly I never brought any of them up because they were all addressed in the meeting with out me initiating the topic. I was very pleased with the outcome and am working with Cassie a lot at home to reinforce what is being worked on at school.
Thanks to the Fessenden team you are invaluable and we appreciate the extra efforts for our girl!

Don't Worry I Still Have Lots to Say

I have not had much time to write these days. I am filling most evenings up with the girls homework and teaching Cassie how to read. All of the effort is completely paying off and she is actually reading her level 1 readers. Tomorrow is a school meeting with the principal, teacher, resource teacher, OT and EA's (not sure if all three are attending) so stay tuned. I have had some frustrating days lately. I arrived at Chedoke hospital to meet Cassie's new developmental pediatrician and low and behold their was a booking error and two families were booked at the same time. I was very frustrated after taking a day off work. Cassie was very happy. She did not want to meet a new doctor and wanted to go to school so we booted out of the hospital but the parking still cost us $5.00. We see the new doctor on April 30th instead. We had another appointment for the orthopedic specialist and we got a note that she no longer sees kids at Chedoke hospital and they changed the appointment date. I was annoyed again because it meant changing a work day again. My nice ER case manager partner volunteered to switch a shift. Thanks so much Kelly. I owe you one. Sometimes I wonder how a parent is supposed to hold down a job trying to juggle these appointments. I realize stress is a factor in my irritation as these small set backs are bothering me too much. I am trying to make money and at every turn my work schedule is affected and I need to go rearrange for an appointment for Cass.
On a happy note my entire family had an invitation to the Easter Seal's Telethon at the CBC Building in Toronto. It was fascinating watching the filming of a TV program as well as listening to the music of some wonderful choirs and performers. The girls had a wonderful time with face painting, making cookies and crafts. My two beautiful butterflies Julia and Cassie came home from T.O. tired but had a wonderful time.

Yesterday Cassie went to the Orthopedic Specialist at Mcmaster Children's hospital. We waited approximately an hour and a half and finally got in to see the doc. Dr. Burrow's took one look at how good Cassie walked into the room and said, "I don't need to operate on your foot from the looks of how good your walking Cassie!" She told Cassie to keep working hard especially while she is growing so fast. She gave me lots of praise and congratulations as well. She wants us to stretch her hamstrings daily which we were already doing but she would like another 10 degrees to the stretch. Dr. Burrows will see Cassie again in 8 months. Cassie taught the surgeon how to do Cat's cradle with a string. Dr. Burrows is wonderful and patient with children. She says when Cassie outgrows the brace on the right foot she can trial no brace. I admitted to taking Cassie out of her left AFO on weekends and at night. Dr Burrows smiled and said don't tell too many people. So supportive and understanding. But Shhhh she does not want me to share this information with too many. (I had just told the entire world on the blog. Maybe this sharing thing is not so good) The people were nice at the 2Q clinic at Mcmaster however the parking is triple the cost of Chedoke hospital. I had to run off quickly to work so Aunt Helen came and drove Cassie back to school so I paid for two cars to park at the children's hospital. I may have to remortgage the house now. I really needed the positive feedback about Cassie's foot and coming from a specialist it meant a lot to me. The left foot is a dynamic problem that is not easily corrected surgically. Their are a number of surgeons doing tendon transfers mainly in the United States and Dr. Burrow may do this type of thing in the near future. I think the exercise and strengthening is still the most important part working to correct her foot deformity.
Cassie receives four Botox needles on May 11, 2009 at the spasticity clinic. We have two more appointments with Tara the Child Life worker to work on Cassie not freaking out during the procedure. We also have drugs to give Cassie at bedtime and the morning of the procedure. So we can all get some sleep. Wish me luck. I don't like to see my little one anxious or in pain. I have learned two exciting visualization techniques and written a wonderful children's story which I have saved as a special surprise to share with Cassie if she gets nervous while she is waiting. We will also go to the new Hannah Montana movie after the procedure as a reward and because with sedation Cassie is not able to return to school that day. Tara will be with us during the procedure so I am optimistic it will go better.
As always I have been writing too much about Cassie but this is the focus of the blog. Raising a special needs child. I can't leave out bragging about my big girl however. Julia continues to work hard in grade 5. She had 2 A +'s this report card and lots of A's and B +'s. She is learning "The Bear Necessity" with chords on her guitar. She is singing a vocal song called "Break away" by Kelly Clarkson for her big finale show in June. I can hardly wait to hear her; The song has a big WOW factor to it. Julia has grown so tall so fast she has developed adolescent PatelloFemoralMyofascial imbalance. A fancy way of saying knee pain. She is seeing a wonderful foot, knee and back doctor named Dr. Norman and has a rehab program of balance, strengthening and endurance exercises for her knees. Who's kidding she needed some attention and exercise just like her sister. Keep up the good work Julia. Your growing up.
I am so happy spring has arrived. I have done a lot of spring cleaning around the house. My work life is chaotic and crazy. My ER is a busy busy place with so many people in need of homecare and difficult situations to deal with on a daily basis. My specialty is assessing and arranging adequate care for elderly and mentally unwell patients in Hamilton. I am so sad about the hospitals cost containment measures which involve closing geriatric beds and laying off my best work colleague Jane Jennings the GEM nurse (Geriatric Emergency Managment nurse). I fear for the elderly who have so much trouble navigating the health system and getting access to good care. This is another set back for Hamilton Health care that greatly saddens me and adds much more pressure to my job. I work tirelessly to advocate for seniors and will continue to do so.
Today I accompanied Chris to the Stroke Prevention clinic at the Hamilton General Hospital. Chris had another follow up appointment with the study nurse for the TIMI 51 study he is in. One of the nurses mentioned they are putting on a stroke fair again this year. We attended last year. The nurse asked me if I would be interested in participating (possibly as a guest speaker). Being a professional nurse and case manager and having a husband who stroked at 44. I was fascinated and would love to be part of this event so stay tuned.
I mentioned I had a lot to say today and I again feel wonderful getting it down in writing. I want to print and bind this blog into a special book for my girls as soon as I figure out how to print it. I worry one day my girls will say don't write about me anymore on the internet. If this day comes I will have to respect their wishes. Until then it is a fun exciting way to get ones thoughts down. I hope people keep the comments coming this is the best part of blogging.
Signing off, I'll try hard to get back to the blog quicker next post.....

All this talk about feet. How smart is your right foot?

HOW SMART IS YOUR RIGHT FOOT?

1.Lift your right foot off the floor and make clockwise circles.

2. Now, while doing this, draw the number '6' in the air with your right hand.. Your foot will change direction.

I told you so!!! And there's nothing you can do about it! You and I both know how stupid it is, but before the day is done you are going to try it again, if you've not already done so.

The question of AFO's

So we attended five weeks of Ability camp with two lead conductors who absolutely do not believe in AFO's. They for sure said that Cassie does not need her SMO on her right foot. They feel her right foot is perfect! Most of my family know I am having an extremely hard time deciding what is best. The Macmaster-Chedoke team has requested Cassie wear AFO's all the time. Cassie has had Botox, Serial Casting and CE in the last six months so as a mother I can't really say what has helped the most and maybe all three things have contributed to this wonderful strong girl who is walking really really well. I can say I am super pleased with Cassie's gait, her strength and her mobility. Her overall fitness and her eagerness to keep working out. I am pleased visually that her left calf is not a tiny stick leg and her small left foot is growing and looking better in size. I think the AFO's were weakening the calf muscles, weakening a lot of muscles in her foot really and stopping some growth of her foot. Upon return home I found Dr. Sloat in Ancaster a chiropractor who is supportive of my exercise approach. Cassie has seen her three times now. She has a plan for more weight bearing on the left leg. More exercises including a small trampoline that Cassie walks on in bear feet. Cassie got her new trampoline as an early easter bunny present from mommy and daddy. Julia got an exercise ball and weights. I am empowered to believe I want my daughter out of AFO's more of the time. Cassie wore her orthopedic sandals all weekend and after school. She did all her trampoline exercise in bare feet. She walked on her toes and heels and stretched her foot all weekend. She is learning to walk around toeing out and we have all walked like ducks around the house acting goofy with her over the weekend. Dr. Sloat works on stimulating the pelvis and watching her leg length discrepancy and assists me with the left foot. I feel much better about this approach as the orthopedic surgeon freaked me out when she once suggested if Cassie's left leg was two short they do surgery to stop the growth of the good leg. I absolutely do not want this procedure. I hope the chiropractor can help with the leg length discrepancies and avoid any extreme medical procedures such as stopping the growth of the right leg. Cassie and I agreed she would wear her AFO's to school every day. At school she is concentrating so hard on her program she can't possibly worry about correcting her own foot and concentrate on school work. We will continue with our own individual plan of no AFO's in the evening and weekend. I feel good about the decision. I will continue to talk to her team of PT, OT, physiatrist and orthopedic specialist about our decision. I want to listen to every opinion and take from them all what I think is best for my girl in her present situation.
I like having the left leg and foot look more equal in size to the right and I like Cassie's abilities to build muscle in the weak left foot and leg when it is not constricted in the AFO. The chiropractor continues to work on her foot. I mobilize the calcaneous four times a day and Cassie keeps wiggling her feet and trying to get her movement back as much as she can. My husband seems happy with this plan for now as well. The rolling over of the left ankle is a constant problem but Cassie is correcting her foot more and more as she learns and strengthens the foot. I want to ask the team to get rid of the right SMO all together and I will ask the orthopedic specialist on April 20, 2009. Stay tuned.

In the areas of education and learning to read I have made some positive steps forward. We have met the teacher two times. Chris attended the meeting which was so helpful the two Chris's (Mr. Chris Moase and Chris Fruck) seem to understand and relate well to each other. The teacher has backed Cassie up on her Dolch words and is stressing five words a day. He backed up her reading level to books that Cassie is doing extremly well with and Cassie is coming around again with her phonics, trying to sound out and less guessing. The entire family is in the grove. Julia made rhymes and read with Cassie. Daddy did all her flash cards and read with Cassie and Mommy read with Cassie all weekend. Cassie was so pleased when she read a sentence herself we all freaked and praised her and made games and acted silly and she loved the attention. The school OT, learning resource teacher and I meet on April 24 and we asked the three EA's and teacher and principal to attend. I called the school board to find out about getting the neurodevelopmental pyschological testing and if it can get done in a timely manner (they have dragged their feet long enough). If it can not get done I will take the advice of my family friend physician and I will go to Toronto and pay for the testing myself or something similar to help diagnosing learning disability. I believe understanding Cassie's learning disability and having this test is the key to helping Cassie with her memory problems, her ability to retain and retrieve information and the correct learning strategies to use at school. Cassie got another zero on the spelling test. The teacher changed his strategy to hoping Cassie could figure out the first sound of the word (Thanks for doing that). I knew the words were hard because Julia could not spell them with out practice. Apparently they are the science words the children in grade 2 are doing science experiments. I will continue to advocate for Cassie. I can't really see the point in trying to memorize words every evening over and over again with no success. It frustrates us all. We started teaching Cassie how to find the word in the dictionary instead. Again only a mother who is trying to utilize her time well. this is just my opinion.
Stay tuned for the battle to get a timely neuropsychological test done. I hear you all saying your kind supportive words in my head. I am pleased to have the love and support of so many. One step at a time. One meeting at a time. I will not get cranky with any one who does not get it.