Category Archives: My Story

Stories that create awareness or conversation about disability.

MY STORY: Daytrippers Celebrity Ambassador BRANDON MENDENHALL

The Mendenhall Experiment

The Mendenhall Experiment

Rock star guitarist based in Los Angeles and advocate for disabled young people, BRANDON MENDENHALL, joins the growing list of celebrity ambassadors for Daytrippers Children’s Charity.  Mendenhall fought hard and worked hard to become a musician in his earlier years despite physical challenges due to having cerebral palsy and constant bullying.  Brandon’s determination and dedication are awe-inspiring.  His dream was to form his own band, The Mendenhall Experiment.  He not only managed to start the band, but they went on to win several awards and perform professionally.  TMX also recently signed a record deal in Southern California with Lucent Records.  Not bad for a boy from Illinois who was once told he could not make it as a musician.

Brandon Mendenhall, founding member of The Mendenhall Experiment.

Brandon Mendenhall, founding member of The Mendenhall Experiment.

Here is Brandon’s story:

My name is Brandon Mendenhall and I am the founding member of my band The Mendenhall Experiment. I was born in 1983 , 2 months premature with complications during my birth.  A life with Cerebral Palsy is all I’ve ever known.

I knew from an early age it would be difficult for me to reach my dreams as a musician. I couldn’t just join any band.  Not just anyone would have the patience and understanding to work with my unique playing style based on my physical parameters  due to my disability.

On August 16, 2014  I reached a personal and professional milestone, signing a record deal 6 years to the day of The Mendenhall Experiment’s first show in my hometown of Kankakee, IL at a dive bar called Paul’s Place.  If anyone  had told me that day 6 years from right now I would be signing a record deal in Southern California, I would’ve told you, you’re crazy. In order to understand the profound impact of that moment in my life I must go back to the beginning.

Young Brandon Mendenhall

Young Brandon Mendenhall

I was born in a very conservative part of North America and raised by my Grandparents. My Cerebral Palsy left the entire left side of my body damaged. I didn’t walk until I was four years old. Throughout my life  I endured ten corrective surgeries on my leg and ankle. My left hand had nearly zero mobility and strength.

I started out my school life in a Special Education Cooperative and then went onto a more mainstream elementary and high school. School, for me, was a constant struggle as I was bullied, teased and harassed because of my disability. As a teenager I had surgery on my left eye.

Fortunately, I fell in love with music at a young age, listening to bands like Korn, Pantera and Nine Inch Nails that allowed me to escape the uninviting world.  Inspired by these musical heroes I was determined to get a guitar in my hands. When I was growing up there were tons of people who doubted me including my own Grandfather. When I was 19 my Grandmother secretly loaned me $1000 to buy my first guitar. Of which I had to pay her back over the course an entire year making french fries and washing dishes at a local McDonalds. I had to hide the guitar from my Grandfather, but after just 2 months of playing, he found out. One day I was playing in my bedroom. I had no clue what I was doing just figuring things out. My Grandfather went to go to the bathroom which was adjacent to my bedroom. He stood in my doorway looking at  me. After a moment he said, “ No grandson of mine will ever be a musician.” That comment was very hurtful and damaging but it also lit a fire in my soul. Despite my Grandfather’s words I persisted in my guitar playing. Not only did I learn how to play guitar but in doing so I rehabilitated my left hand bringing  mobility and strength to it for the first time in my life.

I moved to Florida to attend Full Sail University. Going to Full Sail and subsequently moving to LA was more of my own personal choice to escape family life and all of the small town antics of people saying I’ll never make it. I wasn’t going to gain any recognition there. I wanted to be surrounded by people who inspired me to aim higher and  musically that pushed me to raise the bar. In my mind going to Full Sail solidified the thought in my head that said you either need to move to New York , Los Angeles or Nashville and for me it was always Los Angeles.

Full Sail, where I received my Associate Of Science Degree in The Recording Arts Program and my Pro Tools Music Operator Certification , was a great opportunity for me. I learned the ropes of music production and the proper techniques and the studio etiquette it takes to make an “on the level” professional record.  My Full Sail education provided the foundation for which I stand upon today. I remember sitting in my apartment with a couple of good friends on down time between classes asking them their thoughts on me starting my own me band called The Mendenhall Experiment. At that time it seemed like a crazy dream, but as I thought about it more and more I knew deep down that it could become something more. After I graduated Full Sail I went home to IL. for a few months to regroup and then went to visit a friend in Los Angeles.  I got there and never went home.

In my early days in L.A I secured an internship at Westlake Recording Studios, while also working at Target to pay the bills. After a while I realized that my foot wasn’t going to hold up. While at the same time struggling to keep my internship because I couldn’t get a driver’s license. Since I had to walk everywhere and take public transportation, it took a toll on my body. I came to a point where I needed more surgeries. This was when I had my first set of foot and ankle surgeries at UCLA. After that I fell into a deep depression. I felt like the limitations on my body had won. I fell in with the wrong crowd and was headed down a dark  path.

In early 2006, still on my private downward spiral, I had a chance encounter with my guitar hero, James “Munky” Shaffer of Korn. It was during that encounter that Shaffer and I had a moment to talk and connect over our mutual love for guitar. Our conversation inspired me to climb out of my hole and give music and my life another chance.

Over the next year and a half I would rebuild my life from the ground up. Relocating  to the valley with a better job, a better place to live and healthier friends. It was a new beginning. However, that new beginning soon became clouded with elements of the past. It was in the spring of 2007 when I realized that yet again, I would have to go undergo another series of foot and ankle surgeries at UCLA. In July of 2007 recovering from surgery, I began writing for The Mendenhall Experiment. In August of 2008 with five songs completed it was time to test The Mendenhall Experiment in a live environment. During a months long vacation visiting my family I decided to reunite with my high school jam buddies and book a couple of shows for fun playing the material that I wrote for The Mendenhall Experiment. After two successful shows in the span two weeks with 100 plus crowd each night The Mendenhall Experiment had proven to be something of value. So at the end of my vacation it was time to return to southern California and find permanent members for my band.

From 2008 to 2014 the line-up for my band was a revolving door of musicians.

Every band goes through the process of finding the right combination of musicians who believe in what the band stands for.  During this period I had the fortune of working with some very talented musicians. With these former line – ups The Mendenhall Experiment opened for bands like Korn, Megadeth, POD, Alien Ant Farm and many more. Playing shows like Monster Energy’s Aftershock Festival and playing famous venues such as the Whiskey A Go – Go. , Roxy, The Viper Room and The Glass House.  However I didn’t find the combination of musicians right until beginning of 2014…

At the start of 2014 with my dream team of band mates finally in place a filmmaker approached me about filming a documentary about the story of my life and journey through the music industry living with Cerebral Palsy.  The man who wanted to tell my story  is my long time friend and lead videographer and photographer for Korn.  Sebastien Paquet The band that had first sparked my passion for music at the age of 11 was now, in a way, connected to me on a professional level.

From that point on things have been moving rapidly. My band went from playing our first gig as a group at a dive bar in Santa Ana in March of 2014 to being signed artists with worldwide distribution an EP on it’s way and the documentary release not far behind. All of this happened  in less than a year.  In that year we have played venues such as The Citizen’s Bank Arena , The Viper Room, The NAMM show  and Whiskey A Go – Go several times.

My band and I  were honored to win the August Artist Of The Month for Guitar Center on July 11th 2014. An honor that was especially important to me because I grew up a loyal Guitar Center customer. Just before that win my band and I also got to play the Anaheim House of Blues,  where we won 2nd place for the Battle of the Bands for Warped Tour.  We were discovered by an A&R representative for Lucent Records where we signed a deal on August 16, 2014.

The moment I realized the coincidence with the dates was the moment I realized I was on my way to making it… August 16th 2008 (first TMX show ever) August 16th 2014 (TMX signs with Lucent Records in Southren Ca.)

The Mendenhall Experiment

The Mendenhall Experiment

While some people are enticed by money and fame that’s not me; I really do everything that I do for the kids. For people growing up like I did with disabilities or challenges that make dreams like mine seem impossible. The other stuff is just an added bonus.

Over the past year I have met so many wonderful people whose lives have been touched by my message and my music. That’s a pretty surreal feeling after being doubted and disregarded my whole life. I don’t really care about the people who doubted me back then.  I care about the kids I might inspire in the present and years to come.

I am  looking forward to helping create a future that will bring happiness, success and ability to those formally considered disabled.

– Brandon Mendenhall – Founder/Guitarist of The Mendenhall Experiment

Connect and support Brandon:  http://www.themendenhallexperiment.com/

Leave a comment

Filed under Daytrippers Ambassadors, My Story, Role Model

MY STORY: Jayant Mistry “So, What’s Stopping you?”

International Wheelchair Tennis professional Jayant Mistry.

International Wheelchair Tennis professional Jayant Mistry.

JAYANT MISTRY, winner of the Wheelchair Men’s Doubles Championship at Wimbledon in 2005 who spent 20 years as an international tennis professional, retired in 2007 winning a total of 68 international career titles.  He passes the time now by preparing to help run the European Karate Championship held in November 2014 and juggling the Leicester Cobras wheelchair basketball season, coaching wheelchair tennis and basketball while also working part time in sports development for the English Federation of Disability Sport.  Did you follow that?  Ok, so maybe he is not retired. We certainly are not sure someone can be more active. Born with spina bifida, Mistry played sport all his life (and we do not expect him to stop any time soon).  We Are Daytrippers is honoured to feature the sportsman Mr. Mistry who ran the London 2012 Olympic tennis event and competed in the 4 Paralympic Games.

The Daytrippers Team:  Did you have a role model as a child and now as an adult?

Jayant Mistry:  My father was (and still is) my biggest role model. He came to work from India in the 50’s leaving his family behind in order to make a better life for us in the UK. He always put his family first and has kept us all close throughout his life.

At school my teacher (Mr Moore) was also a great role model. He would join in with us at sport and actively encourage us to push ourselves out of our comfort zone by doing new and challenging things.

Jayant Mistry

Jayant Mistry

The Daytrippers Team:  Do you have a creative talent apart from sport? 

Jayant Mistry:  Not really! But being sporty has taught me about goal setting, making commitments and sticking to them, being open and honest, working hard, continuously learning and developing both on and off the field of play.

The Daytrippers Team:  Would you share an experience where you had to overcome a challenge?

Jayant Mistry:  Having my foot amputated at the age of 12. I was born with Spina Bifida and have one leg longer than the other. I was developing complications with walking with leg braces but this was twisting both legs to the extent that that Dr’s recommended removing my healthy right foot to fit a prosthetic one, they convinced us that it would be better for me in the long term. It meant having 3 months off school and it took a while to adjust to but it has been worth it – both legs are much straighter now.

The Daytrippers Team:  What is a typical day-in-the-life of Jayant like?

Jayant Mistry:  Rather than a day I’ll look at a week instead – I currently work part time (3 days a week) which allows me time to get involved with voluntary roles including managing / coaching / playing for my local wheelchair basketball team (Leicester Cobras), helping the development officer for Karate in organising the European Karate championships (as well as teaching him how to play tennis!) and developing a disability sports  project in India. However I love spending time with family and friends.

Mistry  is a mentor and tutor to children.

Mistry is a mentor and tutor to children.

The Daytrippers Team:  What would you say makes you happiest?

Jayant Mistry:  Being with people I care about.

The Daytrippers Team:  You have accomplished so much and become an inspiration for many, what sports accomplishment are you most proud of?

Jayant Mistry:  In wheelchair tennis winning the inaugural Wimbledon doubles title in 2005 is the moment I look back on with most fondness. I was very fortunate to have been part of the Great Britain squad for 20 years including 4 Paralympic Games.

 

Mistry celebrates his wheelchair doubles championship at Wimbledon.  Photo courtesy of the BBC

Mistry celebrates his wheelchair doubles championship at Wimbledon. Photo courtesy of the BBC

The Daytrippers Team:  What is your next goal?

Jayant Mistry:  I’m still waiting for that to materialise but in the meantime, to be the best that I can be in whatever I do.

The Daytrippers Team:  What advice would you give a child who is facing difficulties?

Jayant Mistry:  A friend of mine once sent me a birthday card with a dog in a rubber ring on the front of it and the words – ‘he knows not where he’s going, for it’s the ocean that decides. It’s not the destination, it’s the glory of the ride’.

Whenever I’ve faced difficult times or decisions I’ve always asked myself ‘So, what’s stopping you?’ We can always find reasons (or should that be excuses?) not to do things but mainly it’s our own fear of the unknown that stops us from believing that we can do more.

The Daytrippers Team:  Thank you so much Jayant for your contribution.

Connect with Jayant Mistry:

Dame Kelly Holmes Trust:  http://www.damekellyholmestrust.org/athletes/jayant-mistry/

 

Leave a comment

Filed under My Story

MY STORY: Rene Roberts “My Mind in the Mirror”

Rene Roberts and husband

Rene Roberts and husband

RENE ROBERTS does not accept mediocracy.  As a motivational speaker, primary school teacher, writer and life coach, she is driven to succeed and help others do the same.  As any bronzed Californian might, Ms. Roberts also enjoys athletics and despite her diagnosis of cerebral palsy as a young girl, she set herself the challenge to become a triathlete.  We Are Daytrippers is in awe of Roberts and salute her courage to speak out about life with cerebral palsy and in doing so, inspire future generations.

Here is Rene’s story:

When I lay in bed at night or curl up in my comfy chair to watch the Angel game or when I am in the middle of a great lesson with my first grade class, disability is no where to be found.

As a child I would walk through our neighborhood outdoor mall with my siblings or family and EVERY time I walked past a mirror or a reflection in a window I was shocked by what I saw. I never once recognized that skinny scrawny kid with the twisted legs who basically willed her body forward with each step. The metal braces were foreign. The eventual plastic braces were foreign too, but most of all the disability was and still is foreign to me. I can’t relate to it. I don’t see myself that way in the mirror of my mind.

In the mirror of my mind I am strong and tall and tan and kind of cute. Sometimes in the mirror of my mind I am even sexy but never in the mirror of my mind am I weak and broken and limping along. I never have been. I don’t know why and I can only speak to my experience but I have always believed myself to better, stronger and more capable than the reflection in the mirror. Maybe this is the way I survive. Perhaps it is the way I thrive. Some may say I am merely fooling myself, that I am delusional or that I have body dysmorphia to the positive extreme. That all may be true, but does it matter? Yes, it matters very much because each day I get up and get dressed (in cute outfits) and I go to work and I shop and I am a wife and a mom and in the mirror of my mind I am no different than you are.

What if the reverse was true? What if everyday I saw my self as socety sees me? What if I believed that because my body doesn’t look a certain way I have no right to a job or an education? What if I believed that my disability made me so ugly I should never leave the house or travel the world? What if I believed that because I was disabled I should never have children? What if I believed as so many do, that because my body is broken or twisted I must have no brain?

This is the reality of society’s mirror. I apply for 20 jobs to get offered one. I have 2 degrees because I felt I needed to be over qualified for any job to compensate for my disability. I have been shunned and suffered terrible abuse in foreign countries because “we don’t want people like you here”. I have even had parents request that their child not be placed in my class because I am disabled. Societies mirror of disability is cracked and splintered. I can’t do anything about that. I can however continue each day to manage my own reflection in the mirror. I must continue to nurture the woman I see without bitterness, anger or upset. I know now that as I reflect my image of my mind in the mirror others begin to see that reflection too.

The children I teach each day soon forget that their teacher is disabled because most days I forget. We are too busy learning and growing and laughing and exploring. Too busy most days to notice the teacher with the skinny legs or even to notice the sometimes-needed wheelchair. To my students the wheelchair for me is a tool I need to do my job in the same way their pencil is a tool they need to do their job. My reflection each day to 5 and 6 year olds has the power to alter societies reflection in the mirror. My refusal to be bitter or angry when people are stupid and cruel has the ability to alter societies reflection in the mirror. My willingness to live fully as a mother and do crazy fun things with my grown sons and someday my grandchildren will I am certain alter societies reflection in the mirror. Each day my responsibility is to manage my own reflection regardless of the cracks, splinters and distortions others may see. If my view and vision in the mirror is consistent enough perhaps those around me will start to buy new mirrors!

The Daytrippers Team:  Thank you so much Rene Roberts for your contribution.

 

Rene Roberts and sons

Rene Roberts with her two sons.

 

Stay connected to Rene:  http://www.renerobertswins.com/

And also on Twitter:  @renerobertswins

Leave a comment

Filed under My Story

Our Story: Melanie and Elliott Preston

Elliott Preston at 1 month old

Elliott Preston at 1 month old

Nurse and Mom MELANIE PRESTON from Knoxville, Tennessee writes about her first month with baby ELLIOTT PRESTON.  Melanie has agreed to regularly update the We Are Daytrippers media project as Elliott was born with down syndrome.

Here is their story:

What a crazy month!  It’s hard to believe I had this baby laying on my chest nearly a month ago in my car.  Did that really happen?!  It seems like a lifetime ago already.

I remember my mom telling me when I was young that I was growing up too fast and I thought she was crazy because I was never even going to be a teenager at the rate the years seemed to slowly drag on and on.  Then I had my first child who is now a teenager himself and somehow all of a sudden my 20 year high school reunion approaches next year as well.  It’s like I blinked and all of a sudden the years passed.

Maybe my Mom was right.

Perhaps it was the ten days in the NICU which helped this month pass by so quickly … or the multiple doctors and therapy appointments we have had since being home.  I can’t even begin to count!

I won’t lie, while some people loathe the doctor I secretly love them so much.  It’s fascinating to learn about different medical diagnosis and I love medical tests and analyzing the results.   My husband on the other hand seems to be the more typical person and he finds appointments and mostly the waiting room his LEAST favorite place.  His appointment enthusiasm is not on par with my own.

Now about Elliott: What we have found from all of these constant appointments is that he is doing really well.  All of his doctors and therapists have been really impressed.  Why you may ask?  Well, let me tell you!  Yes, his tone is low, which is typical for children with Down Syndrome and it is making him the most flexible, yet wiggly baby ever.  He is able to track with his eyes on par with most 1 month old babies although getting him to open his eyes is a challenge in itself as it is rare for him to be awake.  He passed the newborn hearing test and his heart defects are so mild he won’t be seeing a lot of our fabulous cardiologist.  The pulmonary hypertension has resolved and he is off oxygen during the days now!

Hello Elliott!

Hello Elliott!

We have a follow up appointment next month and then he has to undergo a sleep study.  If he passes the study he can then be oxygen free.  Just being off of oxygen during the day is such a feeling of freedom.  Imagine being tied all day long to a very, very, very long cord:  not convenient.

As of last week, Elliott weighed in at nearly 9lbs (4.08 kilos) with his only feeding issue being a case of mild reflux.  All my kids have had reflux in  some capacity so this was not really a shock at all (it was more expected actually).  Elliott is a great baby, pretty laid back most of the time unless he is hungry and then he can get pretty vocal but otherwise he is sleeping or hanging out.  Overall it’s been a great sleep-deprived month just as I expected.

Who knows what the rest of 2014 will bring … or the next 10 years for that matter.  I’ll be sure to update We Are Daytrippers about Elliott’s progress in the next few months.   I hope as a family we can take the time to enjoy these newborn days and live in the moment because as I know all too well; one day I’m going to turn around and Elliott won’t be the baby on my chest but he will be the teenager rummaging through the kitchen cabinets eating us out of house and home.

Cheers to 1 month!  xoxo The Prestons

Stay connected with Melanie and Elliott:  @augustinmarch #amazingelliott

Leave a comment

Filed under My Story

MY STORY: Sarah Stevenson and Captain Jack

7-year-old Jack Stevenson

7-year-old Jack Stevenson

CAPTAIN JACK‘s mother, SARAH STEVENSON from Bicester Oxen, England shares her story with We Are Daytrippers:

I think for any parent, making decisions for your child is always difficult and especially so if you have a child with special needs. I am Mum to Jack who is 7 years old and born with Down’s Syndrome. At our 20 week scan they told me and Jack’s Dad Mark, that’s there was a chance that our baby boy would be born with Down’s Syndrome as his neck measurement was slightly larger than average. We chatted to the specialist midwife about our options, but for us there were no options. We would have our baby regardless. No amnio and no abortions. It was a short chat with her!

Jack decided to arrive into the world slightly earlier than planned (6 weeks too early in fact!) and was almost born on our neighbours decking as I was adamant I had indigestion! First time Mum and all that. After a mad dash to the Horton Hospital, Banbury Jack shot out an hour later after the mention of forceps! After a short cuddle he was whisked off to the Special Care Baby Unit (SCBU). The consultant told us that they thought he had Down’s Syndrome. At the time we didn’t cry or get upset we just knew that we would care for and love our baby no matter what. Jack was in SCBU for 6.5 weeks which was quite hard going but he finally came home only to be admitted again after 3.5 months for open heart surgery. We didn’t care that he had Down’s Syndrome just as long as he survived the operation. Looking back now I don’t know how we coped seeing our baby connected up to all the tubes and wires on the Paediatric Intensive Care Unit but we knew he was in good hands and you just have to get on with it!

Newborn Captain Jack

Newborn Captain Jack

We had a few visits to hospital over the next few years mainly for chest infections. He vomited up to 7 times a day every day due to the build-up of mucus on his chest and faulty valves at the top of his stomach, and failed to put on weight. We used to carry a plastic ‘sick’ bowl underneath his buggy just in case! We didn’t let this stop us doing anything travelling to the Seychelles when he was 6 months old for our honeymoon as well as Lisbon, France and Cornwall! Through all of this Jack was still a contented baby taking on these challenges as they were thrown at him. At 2 years old we went on a holiday to Crete and he suddenly became a different child with regards to his health. Virtually overnight he stopped being sick and started to put on weight! He was also a floppy baby and didn’t walk unaided until he was 4 and a half years old. Mind you that didn’t stop him bombing around on his bottom and then later on with his walker. If you see him now it is difficult to believe how poorly he was early on because now he runs very fast and eats loads! He is very sociable, but very stubborn and only wants to do what he wants to do!

When Jack was 4.5 months I joined our local support group Down’s Syndrome Oxford which has been invaluable to me over the last 7 years. I took over as treasurer and have currently just handed over to another volunteer after 5 years in the role.

When Jack was ready to start school we decided to put him in to our local mainstream school in Bicester, Oxon since most of the advice we received suggested that children with Down’s syndrome benefit from being around other ‘typical’ children and could learn by copying them.

During year 1 Jack’s behaviour became worse (he had always been a thrower!) often reluctant to line up, go into class, stay on task, to do as he was told by his teacher, or sit on the carpet so we agreed for him to repeat the year. This didn’t help his behaviour and if anything the situation continued to get worse. This was a very low time for me and as every time I collected him there was negative comments and his whole education was becoming about his behaviour not what he had learnt. I didn’t know what to suggest or do. I contacted various professionals to try and get some advice but nothing really helped. The Educational Psychologist involved in school suggested he have his 1:1 sessions as normal but that he went back into reception (joined with nursery) at other times to try and build up his social interactions with the younger kids. Unfortunately this did not help and Jack would still lie on the floor, refusing to budge only wanting to have an adult’s attention. He would also behave like this at home so it just wasn’t at school. Every morning when I tried to get him to eat his breakfast or get changed or go to school he would refuse, lie on the floor and refuse to budge! I did go through a couple of very low weeks last October when I just was about to give up but then Jack comes along gives me a big smile, a huggle (a hug and a cuddle) as we call them and tells me he loves me.

The Stevensons

Smiles all around

Earlier this year when the Head teacher had said they didn’t know what to do with Jack in September I knew the problem with his behaviour wasn’t going to get better here and that this mainstream school despite the care of the staff was not right for him anymore. So when the Ed Psychologist mentioned perhaps having a look at our local special school we decided to make an appointment.

I was very upset at the time (February 2014) about Jack attending special school but was impressed by what I saw when we visited. All the questions and concerns I had were answered by the Head teacher and Mark and I both liked the idea of smaller class size and that this would probably benefit Jack. I think I was so upset about special school because I worry about what will happen to Jack when Mark and I are no longer here and who will help him. At special school the staff teach the children about being independent such as cooking, getting dressed, money etc. which are essential skills needed to look after yourself. We also sat in on a lesson in the class that Jack would be joining should we decide to send him there. There were 6 children, 1 teacher and 3 teaching assistants and I was surprised how calm and quiet the environment was. Each child could be taught at their individual level and with the specific help they needed. We decided to get Jack into the special school ASAP as I felt he was not achieving at the mainstream school. He started after Easter with a few mornings accompanied by his TA’s from the mainstream school before attending officially after May half term. He also gets transport to school provided which I wasn’t so sure about but as school has been so good at communicating with me I don’t feel I am missing out on the after school chats when I would have pick him up. He seems to enjoy travelling on the bus with some of his class mates!

The Stevensons

The Stevensons

Well what a surprise in the first full week it was like having a different child. He actually wanted to go to school! He liked his new Teacher (Mr M) and was keen to talk about his new class mates. I haven’t had the battles I was having every morning to get him to school. He is more willing to get dressed and wait outside for the bus to arrive. Obviously, we do still have the odd battle and refusals to move or do anything, but generally he seems happier. This makes home life much better. So now he has been at special school for 5 weeks and I think it was the best thing to do. His speech has improved as well as his behaviour. Whether it was that the mainstream school we chose wasn’t the right place or the fact that any mainstream school would never have been right we’ll never know and it is very early days at his new school but it seems to be going in the right direction at the moment.

Sarah watches as Jack feeds the Giraffe in 2013 at London Zoo.

Sarah watches as Jack feeds the Giraffe in 2013 at London Zoo.

We became involved with Daytrippers after we’d been to the Special Need’s Day at London Zoo. This has been our fourth year attending. Last year Jack was the Daytrippers Ambassador and was allowed to feed the giraffes. He loved it. We also attended Daytrippers 10 year Party and a music event that was held in London. We have just attended the Brighton Sealife Centre Trip which was at the weekend. Jack loved the sharks and feeding the turtles! Thank you Daytrippers.

Please feel free to contact me regarding anything I’ve talked about!

sarah.stevenson68@yahoo.co.uk

2 Comments

Filed under My Story

MY STORY: Elliott Preston

New baby, Elliott Preston

New baby, Elliott Preston

Nurse and Mom Melanie Preston from Knoxville, Tennessee delivered ROBERT ELLIOTT PRESTON in her car on the way to hospital on 24th June, 2014 at 6:55 PM EST.  Melanie has agreed to update the We Are Daytrippers media project as a family with new baby Elliott who was born with down syndrome.

“Well this is a story for the blog.  I delivered in the car.”  That’s the message Brook Morrison from The Daytrippers Team read this morning.  Here is the rest of Melanie’s birth story:

I would have never guessed I would have had a TWO hour labor because my other two children were both induced.  Those labors were 8 and 6 hours which is short for an induction … my Mom had me in 3 hours so I should have considered the possibility!  Next time I will remember to head to the hospital ASAP.

In an hour and a half I went from contractions that were eight minutes apart to two minutes and I knew I was between 8-10 centimeters dilated because I remember how incredibly painful it felt when I had my first son, August.  By the time we got in the car I told my husband Bob to call the hospital and tell them I cannot physically walk to the Labor and Delivery department.  They would have to come get me from the Emergency area.  As a nurse, it helps to know the hospital layout and protocol.  However, the answering service was not exactly sure I knew what we were talking about so she transferred Bob to the L&D department and after some negotiation they agreed.  While Bob was on the phone with the nurse my water broke (not something I recommend in the car).

We were nearly halfway to hospital when I told Bob I felt like I had to push.  He said “don’t do that!!!”  Well, tough luck Bob.  Elliott wanted out and I could not bear the intense contractions.  Trying to keep Elliott in was not working out well.  I decided to investigate what was going on.  I saw the baby’s head.  Oh. My.  That’s when I told Bob we were definitely NOT going to make it in time to the hospital and we needed to call back to let them know.  In the middle of our talk I could not help it … a few pushes and I pulled him out!!!  Bob looked over when I was holding Elliott in my hands and got so pale and he kept asking if the baby was breathing.  YES, he was breathing and crying.  HELLO BABY.

Nuts.  When we got to the ER we just started laughing.  I had about 20 people wheeling me back on a stretcher with the placenta still in me and the cord just hanging out.  HA.  I wheeled past about 50 people in the ER like this.  They got an excellent lesson in anatomy and the resident in the room on call in the Emergency Department had obviously never seen this situation he was so shaken he couldn’t ask me questions.

Elliott is doing well on a little oxygen but they have already bumped it down and cardiology is going to run a bunch of tests tomorrow to pinpoint his heart defect.  Hopefully it’s nothing major, but it could be.  Are you ready, Elliot?  Let’s get this party started!

As for the car, we are filing an insurance claim.  It’s a disaster inside.

Elliot in NICU in the hospital.

Elliot in NICU in the hospital.

Stay connected with Melanie and Elliott Preston

@augustinmarch

HAPPY BIRTHDAY ELLIOTT!!!!!

3 Comments

Filed under My Story

MY STORY: Riah Hedger

Future childcare specialist and photographer, Riah Hedger.

Future childcare specialist and photographer, Riah Hedger.

Aspiring photographer and working on her Childcare certification, 17-year old RIAH HEDGER lets us into her life for a moment as we ask her a few questions about what it’s like to live with ADHD and the mentors in her life.  Riah was one of Daytrippers Young Ambassadors for 2013 and we recently saw her at the London Zoo where she won our guess the sweets competition.

Here is Riah’s story:

The Daytrippers Team:  Tell us about , when you were diagnosed and how that made you feel?

Riah Hedger: I was diagnosed with ADHD at the age of 6; I was diagnosed at such a young age so really I had no way of understanding how I was feeling at that age. I do know that I was treated differently because of it during my time at school and that did make me feel isolated as people were treating me differently due to something that I couldn’t help. ADHD is my best friend at the best of times; it also is my enemy from time to time and as the saying goes, keep your friends close and your enemies closer! I have also traits of Autism, this is a co-existent disorder that affects me too.

Riah's prize for winning the Daytrippers competition at London Zoo 2014

Riah’s prize for winning the Daytrippers competition at London Zoo 2014

The Daytrippers Team:  Tell us about your mentor and role model as a child?

Riah Hedger:  I have had my Dad stick by my side, he’s shown me the right things to do when I was younger, he always helped me with problems that I had in School and he would help me deal with the problem as best as he could, I do often think of a life without my Dad and personally that life really sucks!

The Daytrippers Team:  We know you have finished a photography course and will take the second one soon; what motivates you to be creative?

Riah Hedger:  Actually I’ve just come to the end of my Childcare level 1 which has been tough, I have had a real tough time getting through the last 5 years at School and I was like “I want to right the world and it’s view on kids with ADHD and associated conditions but the course only covered a small % of this.  I’ve learnt a lot of things, what motivated me to do photography as it was a big interest of mine, it was also very relaxing and I loved taking photos of people when I went to gigs. I also enjoy photography as it means I’m behind the camera, I struggle with social communication and interaction so this suits me just fine and I’m uploading some of my fave pictures for Daytrippers soon, so watch this space!

The Daytrippers Team: Would you share a challenge in your life?

Riah Hedger:  A big challenge in my life actually is College. I am slowly overcoming it but it is still quite a big challenge for me, I’m constantly paranoid at the fact that people are saying something about me, that I still don’t fit in with everyone even though I am almost finishing my level 1 course.  I have overcome that by having people who have stuck by me during my year at college and I have also had my Dad to help me, I do mention my Dad a lot, it’s been a pure 1 2 1 relationship for us for many years and this suits me and my ADHD just fine.

The Daytrippers Team:  Do you have any advice or information you would like to share with children or families who may be facing difficulties?

Riah Hedger:  Yeah, forward all questions to my Dad, he’s brillo at answering my many questions on life and ADHD! Seriously though stick by your family, listen and act on advice, think before you act and never be frightened to say “I’m sorry, I didn’t understand that!”

The Daytrippers Team:  That you so much, Riah!  And you’re right – your father’s advice was fantastic.  Read it here: https://wearedaytrippers.wordpress.com/2014/06/16/my-story-russell-hedger/

Any questions for Riah?  e-mail enquiries@daytrippers.org.uk and we can forward them on to her.  Look out for some of her photographs to debut soon as well!

Riah and her father Russell at Daytrippers Creative:Space event in 2013

Riah and her father Russell at Daytrippers Creative:Space event in 2013

Leave a comment

Filed under Daytrippers Ambassadors, My Story

MY STORY: Russell Hedger

Russell Hedger, coach for ADD-vance

Russell Hedger, coach for ADD-vance

Father, former DJ and coach for ADD-vance in Hertfordshire, England; RUSSELL HEDGER shares experiences and wisdom with We Are Daytrippers about raising his daughter Riah who is on the autism spectrum and has ADHD. Russell and Riah have been quite the dynamic duo at Daytrippers events and Riah was one of our 2013 Young Ambassadors.

The Daytrippers Team:  When did you find out about Riah’s diagnosis and what were the feelings surrounding it?

Russell Hedger:   Riah was an active baby and toddler, she has another Brother and Sister who displayed similar behaviours and the first initial feelings from the pediatrician was that it was mimicry behaviour as she was around her Brother and Sister a lot, I told them that I knew my child better than anyone and there were definite similarities. Riah had difficulties in her first school; she found the whole aspect of social interaction, social communication and flexibility of thought challenging.  These I know now as the triad of impairment and is associated with the spectrum. She was often taken out of classrooms and there were many meetings had regarding her behaviour.  The cold words of that Head teacher still ring loud in her head to this day, “You will never amount to nothing Riah!”, I had had enough at that time and moved schools and areas to where we have been for the past 11 years. Riah was diagnosed with ADHD at the age of 6 and was immediately put on medication.  I feel that I have had no other choice but to manage her ADHD/Autism on my own as I found input from professionals very unhelpful.

Russell and Riah at a Daytrippers bowling party.

Russell and Riah at a Daytrippers bowling party.

The Daytrippers Team:  Tell us about your coaching service available in Hertfordshire.

Russell Hedger:  I have been around additional needs now for more than 30 years.  I feel it’s my life experience and wasn’t until 2006 when I spoke to Anne Ross from ADD-vance that she totally changed my perspective on changing that perspective into helping others.  Anne put me on a training course and invited me to management meetings and facilitation meetings with ADD-vance.  I started coaching in 2007 and have been doing Voluntary work since.  I have a knack of getting 100% out of all that I come into contact with because I treat others as I wish to be treated myself. Sadly ADD-vance is only Hertfordshire exclusive and is a wonderful Charity blessed with many people all with their own stories and experiences, their knowledge is enormous and have played a very important part in my CPD.

I have worked with many families all over Hertfordshire and enjoy the very challenging behaviour that comes with ADHD, Autism, Aspergers and other associated conditions.  I’m always humbled by others and often come away feeling that my situation is belittled by what some families are dealing with on a daily basis; such strength and determination and I always make it a habit to keep in contact with people and still help and give advice a long time after we have finished.  The referrals come in from many different agencies and funding streams and I hope that one day I can make a successful business out of it, the website is www.add-vance.org if you’re curious about finding out what we do.

The Daytrippers Team: Did you have a role model or mentor as a child?  How about as an adult?

Russell Hedger:  Yes, as a child it was my Mother and Father.  They were my strength and I totally feel that I’m very much who I am today because of how they raised me.  They took the time to instill (core beliefs) many ways of respect and rules and regulations.  My Mother was a strict South African lady and my Father was from a line of Navy and Army background.  I have only kept in contact with a few of my friends from my younger days (God bless Facebook and Friends Reunited!) and as an adult it has been Loretta Borg (CEO Volunteer Centre Broxbourne & East Herts) and Anne Ross (CEO ADD-vance); these two ladies have developed my CPD and skills to help me through my dark times and have been alongside me since 2005.

It’s hard to put down a list of who I admire. I have and will always draw inspiration as well as lessons learnt from many different people and scenarios, I have done 000’s of hours in furthering my CPD (continuing professional development) around many different subjects.  I enjoy conversing with people from different backgrounds and have true love and admiration for many people who are living with their problems and getting out and making that difference, however small.  Admiration for me is a daily thing and I’m blessed to be around such wonderful people. Of course it would be very rude of me not to list Daytrippers down here as well; what you guys are doing collectively for others out there is so overwhelming for me (feminine side coming out now and tissues please lol!) I have huge respects for Daytrippers and have been so proud to be with you as well.

The Daytrippers Team: Would you share a challenge in your life?  How did you overcome it and what did you learn?

Russell Hedger:  Absolutely, quite simply that I have been a single Father now for the past 13 years. I have raised my 3 and are helping to further my 6 Grandchildren.  Who knows one day I would love to be a Great Grandfather. I have others out there that want me as a Father and I have adopted (not officially) 2 beautiful girls.  My arms are big and accommodate who I can. I had no prior knowledge of single Fatherhood.  Everything before that was done on a joint basis with someone else and I had to tackle many challenges.  Getting recognition and help was a huge milestone and understanding there was no one around at 2:00 am to help really sucked. I’ve done the whole caboodle from menstruation to childbirth to adolescence to adulthood trust me my tool kit is immense.

I have learnt that I can depend on others and to relax every now and then and to share experiences and value and admire others perspectives.  I’m still learning on a daily basis, a lot of conditions are evolutionary and manifest in a different developmental path to those of our neuro typical counterparts. One thing for sure, I’m happy and ready to see the next 40 odd years in as well.

The Daytrippers Team: Do you have a creative talent?  If so, what motivates or inspires your creativity?

I think regularly outside the box and try to put myself in the other person’s situation and always think of what I could do differently or what it must be like to have what you have.  I never quote that I understand or I know how you feel because I’m not you. I have shown Riah and my other kids the basic life skills needed to function and still help them out on a very regular basis. I have a huge passion for breakbeats and samples and rare groove is my chosen musical genre. I was a DJ for a good few years back in the day and used to be part of a crew that used to mix and scratch mix.  Now a days I’m happy to have a huge catalogue of stuff  on my hard drive.  I’ve tried CD mixing and mixing using software but it doesn’t feel or sound the same since the days of vinyl.  My motivation now comes from my children and Grandchildren, they are my drive.  Inspiration comes and hits you from many different angles and watching Riah overcome many different scenarios (and still intact at the other end) is a huge motivational and inspirational tool, I have met many different people in my years, I always listen out for their tales of inspiration.

The Daytrippers Team: Do you have any advice or information you would like to share to the those who may be facing difficulties?

Russell Hedger:  This is hard…. I find things like this difficult because I don’t know your families or children. I’d love to share with you to have hope and belief, remember the good times you had as well as learn from the bad times, connect with external family and make it a part of your life to get them actively involved, learn to follow-up and get an understanding for yourself of any organisation or technique you have been shown, laugh and cry regularly, develop a grab sheet so others can learn about the key facts about your child, learn about your child’s condition and then think how would it feel if you had it and then try to think how it feels for your child.  One thing we take for granted is that our kids didn’t ask for their condition, they were given it.  Minutes are worth more than money, spend them wisely, you never really understand a person until you consider things from his point of view until you climb into his skin and walk around in it, it’s better to follow your own life’s mission however imperfectly than to assume the life mission of another person however successfully, nobody can make you feel inferior without your consent.  To a child ….love is spelt T.I.M.E.  Treasure your relationships, not your possessions.  To handle yourself, use your head; to handle others, use your heart. Don’t set compensation as a goal, find work you like and the compensation will follow; I’ve never known anyone who on their deathbed said I wish I had spent more time at the office. Money never made a person happy yet, nor will it, there is nothing in its nature to produce happiness, the more a person has, the more they want, instead of filling a vacuum, it makes one.  Time and health are two precious assets that we don’t recognize and appreciate until they have been depleted, oh and my last one for you: genius is 1% inspiration and 99% perspiration!

The Daytrippers Team:  Thank you so much, Russell.

Stay in touch with Russell Hedger,  www.add-vance.org ADD-vance Voluntary behavioural coaching services, Voluntary Treasury & Finance Volunteer Centre Broxbourne & East Herts

1 Comment

Filed under My Story

MY STORY: Melanie Preston

Melanie and Bob Preston

Melanie and Bob Preston

Nurse and Mom MELANIE PRESTON from Knoxville, Tennessee is pregnant with her 3rd child who will be born with down syndrome in June 2014.  She has agreed to update the We Are Daytrippers blog throughout her experience leading up to the birth of her son Elliott and their experiences as a family.

Here is Melanie’s story:

Many people whom I have met or read their stories of their prenatal diagnosis of Down Syndrome remember the exact date they were delivered the news.  I can honestly say I have no idea.  Not because it was a terrible moment that I suppressed in order to forget the shock but perhaps it is because I already knew.

My husband and I met in 2010 through online dating, that’s right online – who knew it worked!  We were married in November 2011 and our first daughter arrived in January 2013.  I also have a 13 year old son from a previous relationship who is a great help and a better big brother than I could have ever imagined.

Knowing we wanted to have more children and have them close together because we are in our late 30’s was why we decided to start trying right away after the birth of our daughter.  On our second year wedding anniversary I took a pregnancy test that was immediately positive.  A range of emotions followed when I realised I would have two children 18 months apart and an active teenager!  Busy would be how our lives would be summed up for the next few years but over time it would pass and be worth it.

From the beginning of this pregnancy I felt like something was “different.”  I didn’t feel right.  Not exactly sick all the time but extreme fatigue and just something I couldn’t put my finger on.  My doctor asked that we return a week later as the heart rate was too low during the first check up.  Everything looked fine on ultrasound so we scheduled in a nuchal scan.  The test came and went with no indication on ultrasound that anything would be amiss but when the blood work came back I received a call that my risk was elevated to a 1 in 44 chance of down syndrome and I was referred to a high risk obstetrician at that point.  Several days later I went to the consult and had more blood drawn for the fetal DNA testing and we also learned we were having a BOY.  That was amazing news because my husband was beaming at the news.  The wait for the test results to come back was over a week and people kept reassuring me that it was very unlikely that the tests would show a positive for down syndrome.  In fact, according to the screening, they were correct – there was only a 2% chance.

We did a genetic test to be sure and when the counselor called to let me know our chance had increased to 99.8 % of down syndrome I wasn’t surprised or shocked and I didn’t shed a tear until I thought about having to call my husband and tell him that the son he was excited for wasn’t going to be what he had always pictured.

We chose to have an amnio several weeks later not to confirm the diagnosis but to figure out which type of down syndrome he had and it turns out it is the completely random non-disjunction type (which will not raise my odds in future pregnancies as we would like another child).

Dreams change; ours did in an instant but what I have learned is they can be replaced by a new dream.  A dream of hope and limitless potential.  We never questioned whether to continue with the pregnancy as we knew we could love him regardless of his differences.  I started researching everything I could find about down syndrome and joining various online blogs and forums to get the latest information.  Many things seem to have changed in the special needs community in recent years.  There are so many advocates for these children and resources.  The outcomes have improved and who knows where we will be in 20 more years.

We already named our son.  He will be called Elliott because I have always loved the name.  The associated medical problems that can occur and many that will remain unknown until he is born completely freak me out.  I have to be honest, I’m scared of the unknowns.  It really isn’t the extra chromosome that worries me but the underlying health issues are daunting if you actually start to look at the “what ifs.”  So for now I have stopped googling medical issues and down syndrome in the same search as it’s better for my health and blood pressure.  Currently I’m 35 weeks with an induction scheduled for 37 weeks so not too much longer until we meet Elliott and his extra chromosome.  Stay tuned in the next few weeks as I’m sure this is going to be a wild ride.  I can’t wait to introduce you to my youngest son.

Written by Melanie Preston

follow Melanie on Twitter at @augustinmarch

 

1 Comment

Filed under My Story