Back to School Education about Spina Bifida Awareness

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 be 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. 

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 (3rd grade) and a little brother Garrett (2.5yrs).  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 2 wheelchairs, AFOs, HKAFOs, RGOs, a stander, a walker, a feeding tube & a brain shunt and many 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 bus to school, basketball, t-ball, football, to race his wheelchair, to go swimming, to play t-ball, to cheer for 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, III & 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, 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 require 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, with 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 a 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.  

Neurogenic Bowel & Bladder:  Hayden has a high pressure bladder like a hard basketball.  Hayden can void on his own but not completely.  At 5 years old we are catheterizing him every 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, he 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 his 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 Childrens’ Hospital

Phone: 512-324-0000

Parent’s can also be reached by cell phone:

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!

Hayden's wonderful teacher invited us to present about SB the second week of school.  We were very excited to present.  He showed off his AFOs, he showed how he can stand, he showed how he is trying to work on transfers, his feeding g-tube button on his g-tube dog, he showed his nursing skills.  He then showed all the things he had in common with the class and all the things he can do through pictures on the smart board.

He was thrilled to show everyone what makes him so special.  The whole class asked the greatest questions.  Looking forward to a great year full of potential!

Attached is what everyone got to take home:

This is what I learned about my friend Hayden Trigg with Spina Bifida:

What is Spina Bifida?

It is when you are born with part of your skeleton, your spine, on the outside of your body causing lots of problems and lots of surgeries.

Things that make Hayden unique:

• He has freckles and spiky hair
• He was the poster child for Seton Hospitals and Dell when it opened
• He has had 17 surgeries
• Hayden has lots of things to help him get around (wheelchairs, walkers, standers, AFOs).
• Hayden uses a tube that feeds his belly and he has a tube in his brain.

Things that make Hayden like Me:

• He has a baby brother 
• He has a big sister
• He plays t-ball 
• He likes bowling
• He likes basketball 
• He likes flag football 
• He likes swimming 
• He likes air hockey
• His favorite food is chocolate
• He loves ice cream and McDonald milk shakes

The only true disability is a bad attitude. We are all differently-abled.

There is a link through the Spina Bifida Association for Educators that we printed and attached:  http://spinabifidaassociation.org/learn-about-sb/educators/