This was our fourth annual classroom discussion in elementary about spina bifida. This is the first year that Hayden did the talking. He was very proud to tell everyone about his special equipment and what makes him unique. He always ends with telling everyone all that he CAN do just like everybody else.
Hayden uses assistive technology to do his homework. He can't hold a pencil or write so he uses an iPad and works twice as hard, taking more than twice as long. The whiteboard shows his practice at spelling words behind him.
Hayden showed everyone his G-tube dog and got to show off what the G-tube actually looks like. We explained that it's like an ear-piercing on your stomach and that you don't have to taste your medicine. He's very proud of himself and his 22 surgeries.
The actual G-tube.
Hayden got to show off a lot of his braces and molds. The kids were very fascinated by all of his equipment. They liked getting to touch and feel them. He also got to explain the rules of his wheelchair, which is, you have to ask before pushing. We gave them the idea of the song, "U Can't Touch This" by MC Hammer.
We showed off a few of his special braces, orthotics, and casts.
We explained that every night Hayden works out by stretching his legs in knee immobilizers.
He explained that he can play lots of sports in different ways. He loved showing off his t-ball, football, and state football championship ring.
He is also starting adaptive PE with his new mobile stander at school. We are blessed by the complete acceptance that he receives in school. It is amazing how being in the "least restrictive environment" has been the best place for him to flourish.
He requires a lot more than most kids with a nurse, aide, and two teachers. Their efforts amaze me. It truly takes a village. Below is the bio I make every year for each teacher that works for Hayden. It helps to understand his awesome uniqueness a little bit better.
Our Vision for HAYDEN
Our vision is simple. We want Hayden to be given the same opportunities as any other student in the school. We want him to LIVE, LOVE & ACHIEVE whatever dreams that he wants. It is important to us that Hayden is seen for what he CAN do & not for what he cannot do. We want Hayden to reach his full potential academically & socially. If his teachers & staff have high expectations for him, he will SUCCEED at his personal goals.
VALUES that are important to us as a family:
- We value the celebration of Hayden’s STRENGTHS
- We value the use of People First Language ex: My student Hayden has a wheelchair, not Hayden can’t walk. His legs may not work, but his ears do.
- We value the appropriate responses by adults to questions regarding Hayden’s differences.
- We value Hayden’s inclusion in all activities fostering his INDEPENDENCE.
- We value our parental role as a part of the team that supports Hayden in his education.
- We value his school experience & private therapy, which is helping him reach his FULL POTENTIAL.
SOCIALLY
Hayden loves to be social and loves being around people. He has a big sister, Hanna (5th grade) and a little brother Garrett (4.5yrs). Hayden goes to the doctor's ALOT. He loves music. He has a great private duty at home and school nurse, Neal Shotwell since kindergarten, and he loves being part of the LT state championship football team with CC4C. He has lots of friends and Hayden loves the ladies too.
A lot of things make him unique. He has a lot of gear and equipment that most kids don’t have. He has had 22 surgeries, he has 2 wheelchairs, AFOs, HKAFOs, RGOs, a stander, a walker, a feeding tube & a brain shunt and 26 diagnosis.
HAYDEN’S INTERESTS
Hayden is a happy boy. Hayden loves all activities, he loves to ride horses at hippotherapy, he loves to ride the school bus, basketball, t-ball, football, to race his wheelchair, to go swimming, to play t-ball, kickball, go to camp, play swords, rock climb, to cheer for and annoy his sister and to be a big brother.
MEDICAL MATTERS
as provided by another special needs father Matthew Linden
Spina Bifida/Myelomeningocele: Spina Bifida (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US. SB occurs during the 4th week of pregnancy before many mothers know they are pregnant. In cases of SB, the spinal column fails to close properly which exposes the spinal cord to amniotic fluid. This exposure leads to damaged nerves. SB can occur anywhere along the spine – from the neck to the tailbone. The higher the defect occurs on the spine, the more severe the damage. Hayden’s level is L5-S1 which is considered severe.
Arnold Chiari II,& IV Brain Malformation: Hayden’s brain has to work harder than most with his variety of abnormalities. The Chiari is a herniation of the brain that goes into the neck. His cerebellum is not only displaced, but he also has a tethered cord as well as hydrocephalus. He has a lack of cerebellar development as well as a thin brain stem and splits in his spinal cord.
Hydrocephalus: Most children with SB have Hydrocephalus (HC). HC occurs when the spinal fluid produced in the brain does not properly drain into the spinal column. For this reason, many children with HC have a tube (shunt) placed to drain the excess fluid. Hayden’s shunt is behind his right ear. There is a tube that runs underneath her skin to his abdomen where the excess spinal fluid is absorbed by his body. Hayden’s shunt does not limit his activities in any way.
Symptoms of Shunt Malfunction: Getting a simple cold can look like a shunt malfunction. An onset of excess sleepiness, lethargy & vomiting requires a trip to the ER for testing. Shunts do fail from time to time for a variety of reasons. Symptoms of shunt failure would include “Sunset Eyes” and/or a constant headache that would manifest itself by long-term inconsolable crying. Sunset Eyes is when the pressure behind the eyes forces them to look downward as if the pupils were a setting sun and the lower eyelids were the horizon.
Epilepsy: Hayden has recently been diagnosed with seizure activity. He is on twice a day medicine to try and control the episodes. He also will have rescue medicine at home and at school should he have a major seizure. There is a seizure action plan at the school.
Scoliosis: In some cases, children with SB have scoliosis a bend in the spine. Hayden needs to be placed in any chair that gives trunk support. Positioning in his wheelchair is also important.
Hypotonia: Hypotonic patients may display a variety of objective manifestations that indicate decreased muscle tone. Motor skills delay is often observed, along with hypermobile or hyperflexible joints, speech difficulties, poor reflexes, decreased strength, decreased activity tolerance, rounded shoulder posture, leaning onto supports, and poor attention. For instance, hypotonia also leads to constipation. In some cases, muscle tone improves over time, and we hope that Hayden may learn or devise coping mechanisms that enable him to overcome the most disabling aspects of the disorder.
Digestive Tract: Hayden has a g-tube that he gains most of his nutrition. Instructions for emergency replacement are in his bag. It needs to be placed within half an hour or he should be rushed to the hospital for placement. He can eat and drink on his own as well. He also has a severe gag reflex that can cause him to vomit. He is watched carefully when fed because of his gag reflex due to his Arnold Chiari. Hayden’s digestive tract does not work as fast as a typical child’s. This can also lead to vomiting as he has slow motility of his food.
Mace/Mitrofanoff/Neurogenic Bowel & Bladder: Hayden has a high-pressure bladder like a hard basketball that was rebuilt with part of his intestine. Hayden can void on his own but not completely. At 8 years old we are catheterizing him every 3-4 hours. Instructions are in his binder and every effort should be made to not touch the catheter to avoid infection. Hayden also has little control over his bowel. He is on Miralax as needed and can push to eliminate but it is unclear if there is much sensation.
Wheelchair: Differently abled people view their wheelchair as a part of their body just as a typical person views their legs as part of their body. When you touch a person’s wheelchair, the same rules of etiquette as touching a person’s body should apply. As a general rule (and for safety), only adults should push Hayden’s wheelchair. That being said, opportunities for Hayden to get physical exercise are limited so whenever possible, she should be encouraged to self-propel. As a matter of safety, the brakes on Hayden’s chair should be locked whenever he is taken out or put in her chair. Hayden should NEVER be left unattended near a slope or flight stairs as he will intentionally try to roll down them.
In an Emergency: Should an emergency arise, Hayden should go to Dell Children's’ Hospital
Phone: 512-324-0000
Parent’s can also be reached by cell phone:
Adrienne Trigg:
Scott Trigg:
TEACHER MATTERS
as provided by another special needs mother Kim Johnson
What you expect of me matters…
Because I will rise to the level you set for me, and I have many lofty goals to achieve.
What you think of me matters…
Because I will sense what is in your heart, and it will shape not only how I feel, but what I do.
What you say of me matters…
Because you are setting a tone, and leading my way. You are the voice I wasn’t given to help others understand not just what I have, but who I am.
What you accept about me matters…
Because if you meet me where I am, and embrace me for what I have to offer, together we can shoot for the moon and at least find the stars.
What you do for me matters…
Because when you offer me not just your time, but your devotion, and not just your attention, but your passion, you are not just fulfilling your duty, but rather answering a calling.
What potential you see in me matters…
Because if you can envision my wings, then I will learn to fly.
What investment you make in me matters…
Because if you dedicate yourself to making me stronger, it is not only me who will be bettered, but you will be, as well.
What connection you have with me matters…
Because if I know you care, then I will care. You will reach me, and I will grow.
What attitude you have about me matters…
Because if I am seen as a blessing instead of a burden, my world will be much brighter, and my achievements will be much greater.
What you believe about me matters…
Because if you see my strengths and not my weaknesses, there is no mountain we cannot climb.
What hope you have in me matters…
Because the dreams you hold for me are woven into every step of my journey, and when those dreams are big, so, too, are my accomplishments.
What ACTIONS YOU TAKE because of me matter…
Because you are not only my teacher, but my advocate. The role you take in my life helps dictate the very path down which I will travel. Your power can help open doors for me that now stand shut, raise standards for me that remain far too low, and redefine the boundaries in my life that will either hold me back or help me soar.
Yes, MY TEACHER MATTERS, AND SO DO I!
Front and center with the action!
Principal Gordon Butler always cheering on the team.
Tonight we prepared half-time refreshments for the team as a thank you for all they have done for us. We are sure that is what lead them to another victory in the second half of the game.
