The American Thanksgiving with a Child who has Special Needs

Thanksgiving in America is celebrated on the fourth Thursday of November and was designated to be a time of giving thanks for the blessing of the harvest and of the preceding year.

It became an official Federal holiday in 1863, when President Abraham Lincoln proclaimed a national day of “Thanksgiving and Praise to our beneficent Father who dwelleth in the Heavens.”

American school children are taught about Thanksgiving’s roots in 1621 when Pilgrims had large harvest with an abundance of food.

To celebrate, they held a huge feast and invited a group of Native Americans who had helped them get through that first difficult year, an event that lasted three days.

However regardless of history, Thanksgiving is about the concept of setting aside time to give thanks for one’s blessings.

Sometimes that concept can get lost.

Like many traditional holidays commercialization and the hustle and bustle often times leaves a lack of time to be grateful and thankful for all the really important things in our lives.

You’ll find that a family with special needs never fails to recognize the significance of being so very thankful for all of our blessings.

We find ourselves giving thanks for the smallest things in our lives:

A day of good health for our child

No seizures

One smile

A hug

The sound of laughter

We also give thanks for the our special needs community who surrounds us with unconditional love and support.

We know the significance of the meaning behind it takes a village to raise a child who has special needs.

We remain thankful for family, friends, therapists, caregivers, and physicians who are a part of our child’s daily team.

While often times our Thanksgiving may be a bit different from other families as we work hard to balance sensory challenges and daily care while tending to cooking a Turkey, mashing potatoes and baking pies, we never skip a moment to take a deep breath and to be truly thankful for all that really matters which at the very depths of all our blessings is the gift of life that she share with our child who has special needs.

You can catch up with Stacy at Noah’s Miracle.

Giving Thanks from an Irish Mom

Of course there were things I found mildly irritating, the inability to find a one person size packet of crisps (or chips) and gaps in the doors of public toilets.

I celebrated Thanksgiving during my short time in America but to be honest it was just a chance to eat lots and have fun.

I don’t know all the history behind the holiday but today as a Special Needs mom, this American tradition by its very name strikes a chord with me.

For many people, it’ll be the one time in their year that they stop to give thanks for what they have in their lives, but as a Special Needs Mom I spend the whole year giving thanks.

At the end of a week I give thanks that my child got to school every day, despite my son’s surgery being cancelled

I give thanks that it wasn’t my child needing lifesaving surgery that day

I give thanks that my son’s condition is life limited but not life threatened

I give thanks that we’ve made it through the first few weeks of cold weather with no hospital admissions

I give thanks for four hours of sleep a night.

I give thanks that my son has four wonderful brothers who I know will look after him long after I’m gone

I give thanks for my husband, my rock, my best friend

And I give thanks for the group of people that support me through our family’s special needs journey.

It strikes me that it is often those who have the least to be thankful for, are most grateful for the blessings in their lives.

Having a child with special needs has made me very thankful, it’s made me appreciate what many would take for granted.

So as the American day of thanks approaches, I urge you all to find something or even someone that you are thankful for.

Three Books That Teach Other Children About Disabilities

Sometimes, we simply don’t have the right words to explain difficult subjects to our children.

Talking to our kids about people with special needs and disabilities can be a daunting subject to tackle, especially if we are explaining the needs or disabilities of a sibling, friend, or relative.

Luckily for all of us, there are some great books out there written to not only help explain and encourage children to embrace people with disabilities, but to also help kids with special needs interact with their peers.

Here’s a look at three top-rated books available right now on bookseller sites like Amazon or Barnes and Noble.

Special Brothers and Sisters: Stories and Tips for Siblings of Children with a Disability or Serious Illness by Jessica Kingsley

In this touching book comprised of real-life accounts from siblings of children with special needs or serious illnesses, kids from age 3 to 18 tell in their own words what life is like living with their special sibling.

These stories chronicling the tales of 40 different families share a lot of advice for parents and siblings on how to deal with the things happening in their families.

Kingsley also provides a child-friendly glossary to explain the many different disabilities and medical conditions mentioned throughout the book including words like ADHD, autism, cerebral palsy, cystic fybrosis, and more.

Many Ways to Learn: Young People’s Guide to Learning Disabilities by Judith M. Stern and Uzi Ben Ami

This guide uses a positive, friendly approach to define and illustrate the different types of learning disabilities as well as their origins, while providing reassurance to the child about their disability.

The book also describes the effects learning disabilities may have on emotions, behavior, and academic performance while offering proven coping methods for home, school, and friendships.

In addition to featuring a first-person account from a child with learning disabilities, the guide also includes a chapter on computers and an excellent resource list for parents.

The overall message in Many Ways to Learn is having a learning disability doesn’t make a child dumb—they just have to work harder and find different ways to learn.

Friendly Facts: A Fun, Interactive Resource to Help Children Explore the Complexities of Friends and Friendships by Margaret-Ann Carter and Josie Santamauro

Every child longs to make friends and get along well with others, but for kids on the autism spectrum, this doesn’t come easy.

This interactive workbook, aimed at children ages 7 to 11, teaches kids a range of strategies directed at broadening their social understanding skills through fun activities meant to be appealing to today’s youth.

Children will explore and put to  real-life tests with activities that explore five different themes including “What is a Friend?,” “Being a Friend,” “Making Friends,” “Real Friends,” and “Staying Friends.”

By targeting the specific ages of 7-11, this workbook teaches ASD children how to participate in successful human interactions during a time in which friendships and peer acceptance are crucial.

As Charlie Gets Bigger, Our Home Seems to Get Less Accessible

Their kitchens alone are the stuff of legend – their last one had 49 drawers and cupboards in it! Bliss for anyone who loves to cook – which, ironically, they don’t.

They do love to entertain, though, and the delicious roast dinners we often have with all fourteen of us around the table… well, the big kitchen is definitely handy.

Next year, they’ll start building a new house– the last one, they say – this is the place they plan to retire in.

Over lunch with Mum last week, she casually mentioned that Dad has redesigned the ground floor of their house with Charlie’s longer-term needs in mind.

I was stunned: wider doorways, no step to the front porch, access to the pool etc.

These are things I hadn’t even considered, and when I said to Mum how lovely it was that Dad had thought to do it, she just shrugged and said, “It’s Charlie, of course we would, it’s not too hard to do when you’re starting from scratch.  It’s no big deal.”

Well, it’s a big deal to us.

Disability access: it’s something I’ve heard people talking about, of course.

I’ve sympathised with spokespeople on television or the radio when they’ve been talking about the limited access to sporting events or holiday destinations, schools or theme parks.

It’s always been a bit of background noise, though, because it’s never really struck a personal chord with me.

All that is changing now.

As Charlie gets older, the likelihood that she will become independently mobile decreases.

We are facing the very real possibility of a wheelchair-bound little girl.

At three and a half, Charlie is still pretty ‘movable’ – that is, we can lift her and carry her about.

As she gets bigger, this will obviously become an issue and we’re not prepared at all.  Our house is on a steep hill with an exceptionally steep driveway.

Doorways aren’t wide and the hall is quite slim as well.  We don’t have rails in the bathrooms or hoists in the bedroom.

We have a few steps – small ones as we’re in a single-storey, but enough to cause problems for wheelchairs.

So much to think about!  Just when I think we’re on top of it all (or as much as you can be in these situations), something else pops up and bites us.

We’ll not have Charlie unable to get around in her own home, so it’ll have to go ‘on the list’.

I still don’t know what we’re going to do long-term – except that we’ll need to find a more suitable place to live before long – but in the meantime it’s nice to know that Charlie will not only be welcome, but able at Mum and Dad’s place.

Two Trimesters and No Time to Think

My mum’s choice of birthday gift that year aside, the point is, it strengthened the notion for me that the length of a pregnancy is constant and predicable.

That is probably why the reality of what then happened hit me like a ton of bricks.

When we were first told that my wife was pregnant with twins it was also mentioned that they are often born early.

Fine, I thought, makes sense.

The possibility of a 36 to 38 week pregnancy was banded around. Fine, again, no problem.

Then the discovery of twin-to-twin transfusion syndrome (TTTS) opened the door to the birth being even earlier…much earlier… assuming of course my boys even survive at all…

…Not so fine.

If you are not familiar with TTTS you can read more about my experience with it here – Henry’s Dad TTTS

So, my boys would be premature… Done deal! 24 weeks..? Yeah… could be!

You know what I was saying about the speeding car on a collision course? We managed 31 weeks and 4 days in the end… IMPACT!

Shortly before the birth, to prepare ourselves, we were offered a tour of the hospital’s Neonatal Intensive Care Unit and there I caught my first glimpse of a premature baby.

A tiny,fragile, little boy weighing in at almost 4 lbs.

There was nothing to him.

I felt the car slam into me even earlier than I had anticipated and I broke down in tears.

I became vaguely aware of some of the female nurses swooning over me…how sweet and touching it apparently was that it would have such an emotional impact on a man… “usually it’s the mums that it gets to” one said…

My tears were far more personal than they realised though.

Here was a 4 lbs child, so small, so fragile, yet I was armed with the knowledge that one of my twins, due to the TTTS, was likely to be born at 1 ½ lbs.

I had no idea how to comprehend that my own child would be less than half the size of the baby we had seen.

I thought we would lose him.

I recall the delivery vividly.

The wave of emotion I felt was indescribable but I had to keep myself together.

No mean feat… it was like a tidal wave in my mind for which I had to keep building and rebuilding dams to hold back the pressure. My wife needed my strength and support and that it what she got.

The most challenging aspect of the experience was that there was no guarantee of a happy outcome.

No one was telling us everything will be ok.

Particularly with Henry’s twin, Jasper, being so small….I couldn’t get the vision out of my mind… a hand on my shoulder… “I’m sorry but…” Both boys needed significant help in the first moments of their lives.

The doctors and nurses did their best to involve us but a quick glance was all that could be offered to my wife before they were whisked away.

Heartbreakingly, she would be denied the opportunity to provide them with her warmth, her love and the touch of her skin on theirs.

But they were alive, and they were fighting.

It was bitter-sweet.

I knew before the birth that a lengthy hospital stay would be on the cards. I had figured I would deal with this by telling myself that this period would be a simple extension of the pregnancy, with their true birth occurring when they came home.

As a concept, it had made absolute sense to me, until the moment I saw them…. there was no getting around it….THEY WERE HERE!

The first night I had to leave both my wife and my children in the hospital and return home alone was agonising.

There was a huge sense of absence and longing.

It was not how I had envisaged my first night as a father… home alone.

After my wife was discharged and the days turned into weeks the feeling of not being with my boys became excruciating… as if I had cut out my heart and left it still beating in the hospital.

Both boys were over two weeks old before we even got to hold either of them, hard on me, but I expect torture for my wife having carried them inside her.

Henry was in hospital for two months and came home on his due date, purely by chance, so at least for him, my failed concept of it being an extension of the pregnancy, had worked from a time perspective.

Jasper, however, needed longer and came home after almost six months.

It was an agonising experience; heartache, stress, anxiety and exhaustion.

Henry suffered brain damage and our world collapsed around us… our hopes and dreams as we knew them evaporated.

Jasper suffered setback after setback and had more surgery than most people will see in their entire lives.

They are both remarkable though… strong willed and big hearted… they have pulled through it and are powering on in their own unique ways.

Love them.

Prematurity is part of my family’s lives now and it will leave a lasting legacy for my children and I expect my children’s children.

The impact is too great, the evidence too visible, for it to be forgotten. The resulting challenges are still present.

The pregnancy and premature birth was just part one of a longer difficult journey.

I often still think about the daily visits to the hospital; the Neonatal Intensive Care Unit situated cruelly half way along the corridor to the Maternity Ward.

Each and every day we would pass new parents coming the other way, newborn baby in tow; balloons and flowers; smiles and laughter.

Those families had reached their destination safe and well as expected.

That wasn’t to be for us… we had been blinded by the oncoming car… we had been in the wreck… we haven’t come out unscathed. But we are survivors and we are so thankfully for every day we have. Henry’s Dad.

Prematurity – Our Story

The pregnancy went well up until I was diagnosed with Pre eclampsia on a Friday and gave birth via emergency cesarean that following Monday.

No warning. Just what it was, an emergency.

I was one day shy of 34 weeks.

My boy had beautiful apgars, didn’t need any more than a couple hours of CPAP for his breathing.

He graduated to a cot, off a cosy therm and was tolerating NG feeds all within the first week.

We were pretty confident that we would be home in a couple of weeks time.

I was finally discharged from hospital after a week stay.

By Day 9 of Thomas’ life, he had been moved back into intensive care due to appearing jittery and distressed.

He was not tolerating feeds. I went in to visit him that day.

My boy was not himself, non responsive to my voice which normally calmed him.

His fragile little body kept stiffening and he would utter a muffled pained cry.

I left hospital in shock.

I remember being in Thomas’ room at home when the neonatologist rang to say some words that have never left me.

Your son has a brain bleed. We feared the worst.

We were told to wait and see how things progress. We didn’t know if he’d live, and if he did, what sort of life he would lead.

No doctor could tell us what to expect and they were in just as much shock as we were.

They said that it’s quite uncommon for a baby at 34 weeks to have a brain bleed.

Mystified were the words they used to explain their confusion.

As a parent, I felt completely numb, confused, helpless, and everything became a great big ugly blur.

During this time, I really struggled with expressing milk.

My supply dwindled to an all low of 10 mls every few hours.

I kept it going but the stress had taken its toll.

My cesarean wound began to bleed again. I was not doing too well either.

My husband, having returned to work, took leave immediately. It was so hard telling family the news.

All we could do was wait and watch our little boy fight for his life. And fight he did. We were discharged from hospital after 7 weeks in NICU. Thomas’ seizures ceased.

He needed plenty of time to re-learn to tolerate feeds from a continuous NG tube, graduating to drop NG feeds, to breast and to bottle.

The doctors and lactation consultant were shocked that he could breastfeed.

I’m one proud mumma.

NICU is a place that we spent much of our time in. It was not the way we had planned it but it was certainly the best place for our son.

Hospital became another home. Getting to know the other parents was a comfort.

The nurses who put extra TLC into caring for our son made the experience more positive.

Even as simple as referring to him by his name, instead of ‘your baby’ and remembering how he liked to be held after he’d had a drop feed.

Pumping every 2-3 hours was hard work. Sitting in the lounge, watching mind numbing tv while I looked at pictures of my son to boost my volume felt unnatural.

I longed to have him in my arms, safe at home.

Trying to get sleep was not easy because I would lie awake thinking, worrying about whether my son had tolerated feeds.

The first thing that the nurses would say when I arrived at NICU each morning was detailing how many spills and how large they were.

If they hadn’t, I would be checking the charts.

Weigh ins every 2 days were a big deal. Any gain was positive but a loss of weight was a downer.

Doctors rounds became an opportunity to ask questions and discuss Thomas’ progress. I learned how important it is to ask questions.

One question I never asked until the day of our discharge was, when can we go home?

Thomas and I had a successful 2 day rooming in stay at the NICU and I saw no reason why we had to stay after that.

Leaving NICU was both exciting and nerve raking. I finally got to take my baby home.

From Stacey Dodd, Special Needs Blogger at Minding Thomas.

World Smith-Magenis Syndrome Day

Our friend, Yolanda, would know the look of a SMS household: jelly handprints on the TV screen, spilled milk on the kitchen floor ,a box of cereal poured out onto the counter, and new roll of toilet paper completely unrolled onto the floor.

“You know what’s really funny?” he asked, while waving the now wrinkled and WET hand towel in front of me.

I didn’t.

“Yolanda is from Holland.” I still didn’t know what was really funny. “Welcome…to…Holland…” That was funny.

We had come full circle in the years since our son’s diagnosis of Smith-Magenis syndrome. Garrett was eighteen months old when our pediatrician ordered genetic testing.

The results showed that Garrett was missing a piece from one of his 17th chromosomes; the diagnosis was Smith-Magenis syndrome, called SMS for short.

It explained the symptoms we were aware of: low muscle tone– he was late sitting, crawling and walking, feeding issues– he was always choking, high pain tolerance– he never cried over shots and a sleep disturbance– up every night, all throughout the night.

But it also predicted symptoms we were not ready to hear: intellectual disabilities, self-injury and autistic-like behaviors.

In the early days of the diagnosis, we experienced a “get as much information as we can find” phase that was quickly followed by a “we don’t want to know anything else, ever” phase.

And, eventually we discovered the Emily Perl Kingsley essay, “Welcome to Holland.”

Some of those lines really expressed what I felt and other parts…not so much.

“‘And you will meet a whole new group of people you would never have met.’” I read that line to Charlie. “Seriously?” I asked.

“Is this supposed to comfort me? I already have friends.

Thanks anyway.” Although rare, “it is estimated that SMS occurs in 1 out of 25,000 births. SMS is under-diagnosed, but as awareness of it increases, the number of people identified grows each year”. Charlie and I knew all about awareness increasing the number of indentified cases of SMS.

After attending our first PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) conference, we brought pamphlets to our local Autism Support Group meeting.

We had been going for over a year because Garrett’s autistic-like behaviors had been getting more difficult.

He would tantrum when transitioning from one activity to another, hit himself over certain noises and become inconsolable after even the slightest changes in routine.

We found we had a lot in common with parents of autistic children and wanted to share what we had learned from PRISMS.

One particular woman at the meeting was dumbfounded at the list of SMS characteristics.

“This sounds just like my grandson,” she told us. Charlie explained how much Garrett looked like other children we met at the conference: “They tend to have round, cherub-like faces with a mouth that’s downturned.

A lot of the kids have thick eyebrows and a large jaw.

But the strangest characteristic for us was the SMS voice.

It’s hoarse and scratchy…and every kid we met sounded so much like our son.” Charlie took Garrett’s school picture out of his wallet.

“That could be Zan,” she whispered.

A few weeks later, Zan’s blood work was sent in for a chromosome test. Robyn, Zan’s mother, called me the day she received the news. “Zan has SMS. Finally! We have answers! And people who understand what we go through as a family.”

She was happy. Happy to know there were other children like her son.

ppy to learn his behavior problems were not her fault. Happy to meet those people she “never would have met.”

After “finding” Zan, Charlie was determined to raise more awareness of SMS. “

We could hold a 5K and raise funds for PRISMS at the same time,” he told me.

I wanted to continue the sense of community we felt at the PRISMS conference.

Our 5K became an annual weekend event that included a family picnic. When Brandi’s family from Canada mailed us their entry form, we joked that the 5K had become an International event. Brandi’s daughter, Lilli, had been born with a congenital heart defect.

It’s a less common feature in SMS (25%-50% of cases), but a reason to order genetic testing which is the reason Lilli was diagnosed in infancy.

The first time I met Lilli, she was three and rolling across the floor to get around.

Today, Lilli is in elementary school and many adults have difficulty keeping up with her.

Jean lives in Kentucky with her son, Nico.

They have brought friends and family to our 5K, even Nico’s uncle from Mexico attended one year!

Although he is only in elementary school, Nico is quite the ladies man. The SMS “self hug”, which looks exactly like it sounds, melts hearts and endears our kids to others.

Nico wears hearing aids which is not uncommon with SMS kids, 50%-70% of the SMS population have hearing impairment.

Carissa and her family traveled the farthest distance to our event, all the way from Vietnam.

Carissa’s daughter, Scarlet, is the second child in a family of three girls and one boy.

Like most SMS families, Scarlet is the only child affected.

“Although SMS is caused by a deletion of genetic material, it usually does not run in families” For more information on Smith-Magenis Syndrome visit PRISMS.

“We should post photos at the registration table of other SMS families who cannot travel this far,” Charlie suggested. “Wearing our 5K shirts, of course!” So began our photo collection of SMS models across the globe. Chanty, in Alaska, wore our shirt in front of the local fishing boats.

Chanty was born with renal abnormalities which affect less than 25% of people born with SMS.

She and her mother, Barb, had to fly to a hospital 3 hours away when Chanty needed to have one of her kidneys removed.

Despite some pretty scary health issues, Chanty is a chatty teenager with a fondness for visiting families on the PRISMS facebook group.

Her uplifting comments get more likes than anything I have ever posted!

Sierra’s mom, Denise in New Mexico, photographed Sierra at the Albuquerque International Balloon Fiesta.

Sierra sleeps in an enclosed bed to ensure she does not leave the house while the rest of the family is sleeping.

With the SMS disturbed sleep cycle, Sierra wakes up in the middle of the night and rises early in the morning. Rachel, from South Carolina, posed for her mom, Julia, in a grove of Sabal Palmetto trees.

Rachel loves to play on electronic games, the DSi being her most favorite.

People with SMS have developmental disabilities, yet they retain knowledge for electronic gadgets so well that parents often rely on their SMS child for technical support.

Seth, in Oklahoma, sat on a gate in front of an oil field, while wearing a black cowboy hat and holding the reins of his horse.

Seth’s mom, Tara, and I joked that our boys were “twins” who were somehow born to different mothers.

The common facial features of Smith-Magenis children can be eerily similar. People with SMS also tend to be short in stature and have small hands.

Sam, in England, was supposed to wear his shirt at tea time. His mother, Salli, sent me a photo of Sam on the couch while holding what appears to be a coffee mug.

I could not see a silver tea set or finger sandwiches being served by a butler.

Obviously not tea time, but I appreciated Salli’s effort.

Sam has practiced so hard stacking cups (red solo cups into a pyramid shape) that he has mastered the skill.

Usually, the low muscle tone creates a frustration for the kids.

However, when a child with SMS becomes fascinated by an activity (stacking cups, riding a bike, jumping rope); they show a strong determination to achieve that goal.

Ironically, the gift Yolanda brought back to Holland for her son Tijmen was a red solo cup.

He collects them and appreciated that souvenir more than a toy or stuffed animal.

She and I shared many of the same concerns for the siblings of our special kids.

Yolanda decided to bring her typical son, Beerten, to the conference with her.

Despite the language barrier, my sons and Beerten were able to play Minecraft and baseball for hours – bonding with a stranger who understood what it meant to have a brother like Garrett. November 17, 2014 is World Smith-Magenis Syndrome Day.

And I am so very grateful for the privilege to know and love a “whole new group of people (I) would never have met.”

For more information on Smith Magenis Syndrome in the UK visit the Smith-Magenis Syndrome Foundation UK

Sebastian’s Journey with Epilepsy

Dear Sebastian,

Today – the last day of the decade – you were diagnosed with epilepsy. Who has time to think back on an entire decade when we sometimes struggle to take one day at a time?

A storm blows in; big, grey clouds eat up the blue sky. Patches of white shine as the sun struggles to hold on to her last day of the year. We’re waiting for the rain. But I feel like it’s already pouring. 

Your great-grandma died three days ago. Her heart finally gave out as she struggled for breath. Here we are, half a world away, where time was only allowed to stop for a moment.

Here comes the thunder rolling in and breaking the silence.

I wonder if it will wake you. As you laid sleeping in my arms, exhausted, I prayed for a long, restful sleep.

You need it; seems your seizures are caused by lack of sleep.

Systematic tonic epilepsy. Just like your CP. Its own special name (Dystonic Cerebral Palsy). 

While our family in Michigan floats through their days as they bury grandma, we struggle to learn about the new medication you must take.

The rain begins to drop, cool on my arms.

We left Australia with bags full of medicine. Medicine I didn’t trust wouldn’t hurt my son.

Medicine with pages of side effects and no doctor to monitor them.

Although Sebastian’s EEG showed seizure activity, there were no seizures. Yet.

The medicine was a preventative measure but when I called the International Hospital in Cairo in search of a doctor, they referred me to a doctor in London.

An ocean away.

We decided to monitor Sebastian closely without giving him the medicine. We also decided that we needed to move. Sebastian turned 2 in May 2010.

We moved to Michigan for the summer before moving on to our new home in Toronto at the end of the summer.

We immediately set up appointments for another neurologist and another EEG.

This time we did a video EEG for an entire weekend.

After 48 hours of monitoring, much of that time also attached to a video monitor, there were no seizures recorded.

What they found instead was seizure activity or irritability, focal discharges and focal activity. Focal meaning in one place and in Sebastian’s case, the left frontal lobe.

The neurologist explained that there were sparks but no fire. He said there was no sign of infantile spasms and no signs of seizures from a clinical standpoint.

What does that mean? In my mind it meant no seizures. In the doctor’s mind it meant that there was a ticking time bomb.

And he was right.

The day after the EEG Sebastian started twitching in his right leg. When I phoned the neurologist he immediately wanted to put him on Trileptal, an anti-convulsant medicine. I was nervous about putting him on the medicine.

Sebastian had his first full seizure before I was able to give him his first dose.

It was terrifying.

Dear Sebastian,

I feel helpless sometimes when you cry and I don’t know what’s wrong or what to do to take away your pain or fix the problem. But this morning, I felt a new kind of helplessness.

One mixed with fear. And you probably don’t remember. You probably don’t even know what happened.

As you were sleeping in my lap your right arm and leg started to shake.

Soon your whole body was shaking and convulsing. Your eyes rolled back.

I said your name to try to wake you. I held you tight in my arms, crying. I didn’t know what to do. I thought, this is it. This is a seizure. It was worse than I ever could have imagined.

I carried you downstairs and your eyes opened, looking at me but not seeing me. I said your name over and over through the tears.

You looked up at me and tried to smile but your body was seizing so you were in and out of consciousness.

You smiled an empty smile and then your mouth twitched and your face contorted as drool slid out from the corner of your mouth.

I took you to your papa and we just talked to you, trying to get you back to us. I imagined you seeing me, a blubbering mess.

There was nothing else I could do. But wait. And wonder.

How long would it last?

Seizures became part of our lives. We tried to take note of what triggered them.

It was still a lack of sleep or maybe a change in routine. There was adjusting to a new time zone, a new environment, a new schedule, new therapies.

We saw changes in Sebastian from the medication. It become harder for him to do the things he was learning how to do and to have the energy to do it.

I researched medicines I didn’t want Sebastian to take in the first place. Medicine that can make his hair fall out. Make him feel dizzy or sad.

Make his tummy hurt. Make his liver weak. Make it hard for him to do the things he was already learning to do.

Medicine that is so strong it’s also used for bi-polar disorder.

Despite the medication he was still having seizures.

The medication was constantly being adjusted to try to stop the seizures which just made Sebastian more tired.

After a big seizure which took us to the hospital we added another medication. And then the seizures stopped.  We moved to Toronto and things were good for a few months.

Until the seizures started again. And then we had to navigate a new system. Again. And a new medication. There was weaning and adding.

There were sleepless nights in the ER. There were more MRI’s and sleep deprived EEG’s. Because everyone wants their own baseline. Sebastian slept in our bed most nights.

Or we slept in his.

Then we got a video monitor and hoped we’d see a seizure or hear a seizure that way because we were all exhausted.

When your child is having a seizure there is nothing you can do except wait it out. I hold him tight, sometimes upright or lay him on his side if he is already laying down.

Sometimes he burps and soon snaps out of it. Sometimes he even smiles and I know he’s back after I’ve been saying his name over and over because there was nothing else I could do.

Usually his seizures are only about a minute. Which is a good thing. Five minutes is bad.

Anything over that and it’s a trip to the hospital.

Dear Sebastian,

You are brave and you are strong. Despite feeling too tired sometimes you always have a desire to engage with the world around you.

You laugh at your daddy’s jokes and your sister’s joyful and often silly antics. You tell me how much you love me with that smile in return for my words.

You work hard to communicate with us using your voice and your communication book/iPad.

You love to feel the sun on your face and the wind in your hair on an afternoon walk, no matter hot, cold, sun, rain or snow. 

Your seizures are now just a part of the way things are and we keep on having adventures in spite of them.

They come less often, that we know of, though sometimes I wonder if you have them in your sleep and I just don’t see them.

Which is scary. But I suppose that’s parenthood.

They happen when we do too much too often too fast so we try to take things slow and I think we do a pretty good job at enjoying life together.

Since Sebastian is now on two medications, Keppra and Volproic Acid, his seizures are more under control. I say more because he still has them.

I thought that he would get on medicine and they would suddenly disappear. Antibiotics make your sickness go away, right? Well, not so with seizures.

It’s a gamble and usually a cocktail of medicines that do the trick.

Unfortunately for us, the trick only helps most of the time, not all of the time.

The medications cause him to space out sometimes and can make him tired, though less so since he’s been on them so long.

We don’t know what the long term effects of the medications are but because they are keeping his seizures ‘under control’, no one wants to rock the boat.

Well, the doctors don’t. I know that it’s possible the medication creates a fog in which he goes through life.

Not because he can tell me but because I have talked to others.

So I look into other other options, like CBD oil, but change is scary. So we keep it as it is for now while I do a bit more research.

My hope is that we can keep Sebastian’s seizures under control in the healthiest way possible. When your child has seizures there is a lot of fear.

I’m afraid of the seizure that happens in the night that I don’t know about. I’m afraid of that seizure that doesn’t stop at five minutes.

And I’m even afraid of the medicine fogging his mind, keeping him from reaching his fullest potential.

You can follow Sebastion’s story at Free as Trees.

Epilepsy: The Forest Fire

Aaron was a happy little boy, he loved his football and he had an answer for everything.

He had started nursery in the September of 2008 and was doing really well. His nursery teachers said he was a joy to have around.

The Christmas after he started nursery through to Easter was difficult for us, Aaron was very unwell during this time.

He had a chest infection, a persistent cough and although he was still his happy playful self, things got worse and he was vomiting up to 40 times a day.

My concerns were dismissed; ‘it’s viral’ ‘you’re worrying too much’ and even ‘he’s playing for attention.’

But, one morning I woke to find Aaron clammy, waxy and bubbling at the mouth – we headed to the hospital.

Aaron was admitted for 5 days with low blood sugar but after asking again for a reason for the vomiting and coughing they went on to do various tests and a CT scan but he was eventually discharged – we were none the wiser.

That very night, Aaron had gone upstairs, I called to him but he didn’t respond.

I found him in the bathroom having what I now know to be a seizure.

We spent over a year trying to understand what was happening with Aaron even spending time in PICU.

They’d flown in a Doctor from Birmingham Children’s Hospital and we got a diagnosis of FIRES disease.

Aaron’s doctor had worked in Melbourne where she had seen a case similar but extremely rare.

She decided to test Aaron and we waited 12 weeks to be told this was an auto-immune/post viral related illness.

FIRES disease was only newly diagnosed a few years previous and with no known cases in the UK so we had no clue what we were dealing with (neither did the doctors), in fact the not knowing what was ahead of us has probably got us through the last few years.

When Aaron had a viral infection the previous year, his immune system had gone into overdrive and started attacking his body,which resulted in his seizures, Great Ormond Street hospital decided because of how rare and destructive this illness was that they would have Aaron as a primary patient, and he is now a candidate for the first UK trial for the medical Cannabis treatment due to start 2015.

There is only one other case of FIRES disease in the UK and a very small number worldwide but we do draw strength from each other and learn from each other’s experiences.

It’s difficult to think back to the early days after Aaron’s diagnosis, he was very aware of what was happening to him and he was frightened.

He would say ‘the fizzies are coming’ when he felt his seizures and ‘am I going to die?’ – Which was heart-breaking for us.

FIRES disease is just that – a fire that swept through his brain, we watched helplessly as his speech disappeared, his understanding, his colourful and bright personality his mobility – everything was destroyed.

Our little boy, who once had the nurses wrapped around his finger with his cheek and his charm was slowly being destroyed with FIRES.

Aaron is still regressing, his epilepsy is causing other unpleasant conditions; a psychosis type disorder and Eases,which causes Aaron’s brain to become overactive when he is tired.

This only affects 1% of people who have epilepsy and sometimes I do think to myself ‘What are the chances?’

We have to remember that Aaron is still here, he’s still with us and I can still see a little spark in his eye – it’s what keeps me going and seeing his big infectious smile, but at Birthdays and Christmas we do grieve, we grieve for the little boy Aaron should have been, I’m sad that Adam doesn’t have an older brother that he can play with, I’m sad that Aaron doesn’t have the life he should have had and I’m sad that I can’t watch our wedding video because it shows a laughing, chatting, running Aaron.

I find it difficult to have ‘pre FIRES’ photos of Aaron around or any of his things from his first 4 years.

They’re stored away and I know that in the future there will be a time that they will represent precious memories but at the moment while we fight for Aaron, they’re just too sad a reminder of what could’ve been – what should’ve been.

FIRES disease means having a plan but not being able to plan.

I know this doesn’t make sense but it’s our life. We have a plan for Aaron, it does change depending on how he is and at one stage it was palliative care plan, but we always have a plan.  On the other hand, we can’t plan ahead – we can’t plan days out, holidays or even a trip to the shop.

Aaron may not have visible seizures everyday but when a cluster of seizures hits we know we’re in for a bit of trouble – this can happen every 7-10 days and we get no indication that a cluster is on its way, just recently he went into status resulting in him spending time in PICU on a ventilator and in an induced coma where he seizured for a continuous 8 days.

People don’t always understand what it means not to be able to plan ahead, it means we let people down – a lot.

We don’t mean to but it’s just the way things are.

We’ve lost a lot of friends over the years, I think they just got tired of asking and tired of us cancelling.

But we’re thankful for those that are still around and the support of family – even though looking after Aaron can be a scary experience.

We’re an extremely happy family, one that’s been strengthened by what we’ve been through and for that I’m thankful.

I hope that by sharing Aaron’s story we’ll help raise awareness of the devastating impact of epilepsy. And from one mum to another, ‘it’s only viral’ is not good enough if you are worried about your child – trust your instincts.

Febrile infection-related epilepsy syndrome (FIRES) is a severe brain disorder that develops in children after a fever.

This condition results in sudden seizures and leads to declines in memory and intellectual ability.

FIRES can also cause psychiatric disorders or problems with motor skills.

The cause of FIRES is unknown, but may be related to infection, genetic susceptibility, an autoimmune disorder, or a problem with metabolism.

Treatment involves anti-epileptic medications to manage seizures, but they do not usually work well.