November is National Epilepsy Awareness Month (USA)

I will be the first to admit that I DESPISE EPILEPSY!

Watching your little baby, toddler or child have a seizure (or ‘fit’ as some people refer to them as) is a scary thing.

Two of my daughters have been diagnosed with epilepsy and I have witnessed them having multiple and horrible grand mal and complex seizures.

You feel unprepared and helpless as you watch your little one shaking, jerking, unresponsive, pale.

Even though I’m a nurse, and have training and experience in dealing with seizures and other emergencies, it’s very different when it is your own child!

Inwardly you find yourself asking, “Is this really happening?” I have called the ambulance for back up numerous times.

On some occasions we’ve had to go into hospital.

I have given rescue breaths, used portable oxygen, put them into recovery position, used rectal and buccal rescue medications on the girls and taken videos to show the neurologists (for diagnosis).

We are familiar with brain scans (MRIs), brain activity studies (electroencephalogram or EEGs), rescue medications, epilepsy management plans and anti-epileptic drugs.

I am SO THANKFUL that we were able to wean my seven year old off of her epilepsy medication during the summer.

She started having seizures as a six month old baby, but thankfully, she has been seizure-free now for three and a half years and has no other health issues or disabilities.

My youngest only had her first seizure after she’d turned four years old.

The paediatrician and neurologist both weren’t surprised she’d had a seizure, as she supposedly has a ‘lower threshold for having a seizure’, due to her history of a brain bleed and resulting cerebral palsy.

Thankfully she has now seemed to stabilise on daily medication (Epilim). She’s had four seizures to date. Both girls have had several EEGs and nothing ever conclusive drawn from the results.

Epilepsy is a broad term to describe seizure disorders.

Anyone can develop epilepsy at any stage of their life. It is a largely unseen medical condition (unless you are in the throes of a seizure).

Would you be able to tell from this picture that both little girls have epilepsy?

It really is something we don’t think much about unless we are unlucky enough to have it happen to us…

As I reflect on Epilepsy awareness month, I am so grateful for advances in modern medicines – without which we would not have drugs to prevent seizures (anti-epileptics) or drugs to calm activity during a seizure (rescue medication).

Dunnes Stores Launch Clothing Range for Kids with Special Needs (Ages 3-14)

The range is available exclusively online and includes –

Girls, boys & unisex short sleeved bodysuits priced at £4-£5 each.

Girls, boys & unisex short sleeved sleepsuits priced at £7-£8 each.

Girls, boys & unisex long sleeve body suits priced at £4-£5 each.

Girls, boys & unisex long sleeve sleep suits priced at £8 each.

All the items listed above are available in ages 3 through to 14.

The girls print is pale print stripe, the boys a pale blue stripe and the unisex, a grey star print.

The range is available to order online with free delivery on all orders over £40 or a free click and collect service from their 132 stores across the UK & Ireland.

We found the range by typing ‘vests’ in to the Dunnes search function.

www.dunnesstores.com

Dunnes is the first large retailer to offer a range of, ‘poppered’, clothing up to the age of 14. Well done, Dunnes!

When a Doctor Told Me I had to Wean My Daughter Off of Me

Many years we’ve spent guiding her, and others around her, so that she didn’t have to fight so terribly hard to be normal.

The trouble was that it was so very difficult to try and educate people to fit into her world, instead of them forcing her to fit in ours.

As a family though, I’m proud to say that we do everything possible to navigate our way through her confusing world, to keep her calm and happy.

It’s very difficult and very tiring and we aren’t perfect by any means, but we try, and when we succeed it’s the most invigorating feeling of success.

My bond with her, was felt the moment I became pregnant, when she was born however that bond turned into something so strong that each and every day, for the next four years, I felt like I could burst with love.

It was very powerful, and as she grew, I knew that that bond was not just one-sided, she felt it too, she was connected to me in such a way that it was like our mind and bodies were infused as one.

I realized, after she was diagnosed with Autism, that that bond was most probably so strong because I understood her completely; I knew what she wanted, with a nod of her head, or a certain look that she gave.

She couldn’t communicate to me with words what she needed but instinctively I knew. And so it became normal for her to want me to be there for her, at all times of the day, night and through her school hours.

She was so attached to me that it created problems in other aspects of our lives.

If she woke throughout the night, it would be me and me only that she would accept comfort from, if dad went to console her, her screams just grew in intensity and volume.

In the end I stopped asking for him to try because it would only make things worse.

In the daytime, if I needed to pop out, I couldn’t, because she would get so upset it just wasn’t worth putting her through that level of distress.

At school, she would become so upset at the beginning and end of a school day, that I would inevitably end up crying…. alongside her. I was beside myself. She was 100% attached to me and I didn’t at this point know to help us. It got to the point it was suffocating.

I was trying my hardest to survive on only a couple hours of broken sleep in any one night. It was all consuming.

And then a doctor told me I needed to wean her off of me!!

How I was supposed to do that I didn’t know. But we gave it a go. We had no professional help, support, or guidance and we had to wing it.

Just like every other obstacle or issue that we had to contend with, it was down to us to find a solution to this ever growing issue.

And therein lies the problem. Because we were not given any help, or support – we were led to believe it was her that had the issue.

So our attempt at weaning was understandably unsuccessful. It was the most distressing time for all of us. If I tried to leave the house, then she would just scream and shout and get inconsolably upset that it would take all day just to calm her down and try and get over it.

She exhausted herself and that created more upset.

She was constantly on edge and terrified I was going to leave her. She had no concept of time and so every minute felt like an hour to her.

It didn’t take us long to figure out our strategy was terribly wrong. It wasn’t her fault that she was plunged into the unknown without careful planning or explanation. It was ours.

We knew that she didn’t need weaning from me I was her safe, her happy, her understanding.

If anything she needed double the amount of what I was providing for her, and that is where we realized the problem was.

She needed to build a relationship with dad. He needed to also become her safe and happy and understanding. It’s a long road ahead, but that bond is forming brilliantly, they laugh, and share jokes, she initiates close contact with him, whereas before she would avoid it.

To witness this bond growing between creates so much magic it is beautiful to watch. I still, am the only person that can go to her when she’s upset, or in the night when she wakes. But I can leave the house, now for short periods. I have to leave unnoticed because she gets distressed at seeing me leave.

But when I am gone she is calm and happy, and my on my return she is so, so happy to see me and I think that part of that happiness is because she feels proud of herself for overcoming this massive obstacle, that she was so frightened of attempting before. And I am proud of her too, immensely.

I’m very glad I trusted my instincts and didn’t wean my daughter off of me. All we needed was an extra special bond for my extra special girlie.

Is Freddie Anxious?

Once he went back to school we had less chance to practice our new skills, but we were still pleased with his progress.

Then, three days before term was due to end, Freddie’s teacher rang me to say that there had been an outbreak of Slapcheek infection among the children, knowing that our paediatrician had advised that this could be potentially troublesome for Freddie because of his medical history.

We decided between us that it would be best if he remained off school for the last days of term.

I hadn’t planned for this eventuality, so still had some preparations to complete and errands to run.

Never mind, I thought, I can take him with me, it’ll be nice to have some company.

First stop was the supermarket. Freddie swore like a trooper up and down every single aisle.

What’s more, he seemed to take great delight in doing so, waiting until somebody passed close by before blurting out a profanity, then looking up at me smirking mischievously.

Clearly he was looking for a reaction, so I decided not to give him one, but to ignore the behaviour and brazen the whole thing out.

I didn’t notice too many dirty looks, so perhaps my fellow shoppers had decided the same, or, more likely, they weren’t taking any notice of us anyway.

It did occur to me that perhaps Freddie was aware that he was missing out on the Christmas party, and the fun and treats the other children would be enjoying at school, or, worse still, that he was sickening for something.

I decided to gloss over his language in the supermarket and take him for a little treat. We went into a nice cafe and ordered drinks and biscuits.

On this occasion I’d taken the buggy, as we had a lot of stuff to carry, and a long way to walk, but, as I had over the summer, I sat him on a ‘proper’ chair at the table.

He made a grab for his drink and upended it all over the place.

I didn’t dare leave him to fetch napkins, and while I was rooting around in my bag for tissues, he threw his biscuit at the next table, then made a run for it.

I managed to grab him, but the buggy, laden with shopping, tipped over.

The people at the next table, recipients of Freddie’s flying biscuit, were very understanding.

They helped me right the buggy, and held it steady while I put a struggling Freddie into it; they brought napkins and helped me to mop up.

Whoever they were, I salute them now, and commend their behaviour to anyone who comes across a mum in that kind of situation.

Then Freddie announced that he needed the toilet. Abandoning what was left of the drinks, I wheeled him over to the accessible stall, but it was occupied.

He was getting more insistent, so, rather than chance waiting, I took him into the regular cubicle.

It was nearly impossible to manoeuvre the buggy in there, which made getting him on and off the toilet very difficult. He was lashing out, scratching my face the whole time.

He seemed totally overwrought, but I had no idea what had triggered it.

Fortunately, no illness materialised over the Christmas break. Ever since then, though, his behaviour has often been difficult when we are out and about.

I noticed that he would flop and drop, particularly in big, busy stores, plonk himself down in the middle of the floor and refuse to get up. In the kind of shop where there is a greeter at the door, he would say ‘shut up, lady’ (or man), or swear as he went past.

He’s always indulged in quite a lot of attention-seeking behaviour, but now he would really ramp it up, or just be generally difficult and obnoxious.

Very rarely could we see any obvious trigger.

His teachers reported no problems at school. He was progressing well there, with no new behaviour issues. He was still capable of being a thoroughly charming little man at times.

Then, one day this summer I spotted a link someone had posted on Facebook to an article that concerned itself with addressing challenging behaviour in children with Down’s Syndrome.

It was an academic article so much of it went over my head. But one or two things struck a chord with me.

Children with Down’s Syndrome have a tendency to engage in certain kinds of challenging behaviour: this challenging behaviour serves two functions, either (1) to obtain something that they want, an item or an activity, or (2) to escape or avoid a situation or activity that they don’t want.

Behaviours associated with anxiety (and also depression and withdrawal) tend to increase with age.

I began to ask myself whether Freddie is becoming anxious in certain situations.

Is his behaviour a way of demonstrating that anxiety, especially since at this stage in life he would struggle to put his emotions into words.

Was it also, perhaps, a way of trying to escape a place or situation that causes him distress?

But what could be making him so anxious about a trip to the shops or a cafe?

To be honest, I didn’t have to look very far to find the answer to this: anxiety runs in our family like a certain shape of nose might run in others (no pun intended).

Sensory sensitivity is not uncommon in our immediate family, either.

Although Freddie has never shown any pronounced sensory difficulties, perhaps he has slight ones that are magnified in certain environments, busy or unfamiliar ones, where he is bombarded with lots and lots of stimuli all at once?

Maybe he simply feels overwhelmed?

I haven’t come to any firm conclusions yet, but I’m observing him closely for clues when we’re out and about.

I have noticed, for instance, that he seems better in his buggy. Does he feel sheltered in there, a bit safer?: I will have to make a point of noticing whether there is any difference in his demeanour according to whether or not the sun canopy is in place.

The last time we went to a restaurant, Freddie was well-behaved until the food came. Then he started spitting and trying to escape from the table.

I took him outside to calm down, but each time he settled and I tried to take him back inside, he swore as soon as we got to the door.

With hindsight, I played this all wrong. Daddy had ordered macaroni cheese for Freddie, because he likes pasta. The spitting and the escape attempts started after he tasted the food.

Freddie’s always been ambivalent about cheese. Perhaps the sauce was just too cheesy. All the food was pretty rank, to be honest.

Perhaps the spitting was a way both to get the food out of his mouth and to get out of eating it; perhaps that’s why he ran away, and I ended up chasing him behind the bar?

Maybe the reason he swore every time I tried to take him back inside was because he was afraid I was going to make him eat that bloody awful food?

He has certainly given me a few clues to be going on with.

I have the beginnings of a plan of action in mind, the rest will be formulated ‘on the hoof’ as the situation evolves.

This Christmas I am feeling optimistic that, with time and perseverance, I can help him to manage these issues.

I Am THAT Mum Now

If there isn’t wheelchair access I am appalled and generally refuse to enter the establishment.

I have also become like a hawk with my checking for blue badges in disabled parking bays.

I am a stickler for people doing the right thing… not the ignorant or lazy thing.

I don’t think I would ever get into a conflict over it, but I would be enraged for the rest of the day about it.

Amy is at that size now where she is starting to exceed the limit for a standard baby changing table.

I guess the clue is in the word – she is no longer a baby – what I need is a toddler changing table.

A changing table that supports a child that has a strong extensor reflex, sporadic unpredictable dystonic movements, and sometimes a little bit of a temper!

I have noticed that most changing tables carry a weight limit of about 12kg or 26lbs.

I wonder if this is the absolute weight it can bear or if they set it a little lower to cover their backs for in the event of an accident.

I noticed the firefly Space to Change campaign a long while ago and have become an avid supporter of it.

We no longer exist in a world where a wheelchair user should have to struggle to access the community!

It seems a huge shame to me that so many families have to cut their days out short due to inadequate changing facilities.

I can see it from both sides though. If you look at it objectively… on one hand you’re thinking… well a business would need a sufficient amount of money and space to cater to these people… these people who in their eyes are a minority and could possibly go elsewhere.

But through my eyes… the eyes of a person who wants their child to be able to go anywhere without having to panic about the inevitable nappy explosion… I want to know that provisions are in place for us.

In some ways, I suppose a lot of the world is blissfully unaware of our struggles.

It isn’t until you are in our position that you start to see how hard it can be to simply go to the zoo, or even just the shops.

The amount of preparation, packing, lifting and assembling required can sometimes be enough to not ever want to leave the house. But this isn’t an option.

At the moment our gastro issues are pretty complicated. For the last two years since Amy’s fundoplication surgery failed (it is an anti-reflux procedure where the top of the stomach is wrapped partially around the bottom of the oesophagus).

We have since been for PH studies, surgical consults, gastro appointments at different hospitals, different formula and medication trials and so on.

It has left us in a situation whereby we don’t know how her feed will be tolerated.

Sometimes she will retch violently and be sick; but mainly (TMI sorry) she will have an unpleasant nappy that may involve an outfit change and sometimes a bath.

At the moment the suspected culprit is gastroparesis, but we aren’t sure. For now we are stuck on 24 hour pump feeds.

We are awaiting a GJ button trial (the gtube is placed by a radiographer into the intestine to bypass the stomach and hopefully aid better digestion).

Until this happens, days out are met with anxiety and uncertainty.

We take many spare outfits wherever we go and hope for the best.

Without this issue we still have sensory and mood issues and definitely equipment issues too… but wouldn’t it be cool if we had one less thing to worry about?!

Everywhere Amy goes now (respite and nursery mainly) hoists are being used…all indicators pointing to the fact that our little girl is turning into a somewhat tall and hefty lump of cuteness.

I am delighted at how she thrives and grows but if my back had a voice it would be groaning and crying!

I have now a huge respect for those businesses who recognise our struggles and who have worked hard to ensure that EVERYONE is included and can take part in days out safely and with dignity.

For now we just about get by using the baby changing table… but I am dreading the day I start to unroll a yoga mat on the floor for a nappy change.

With this will have to come antibacterial sprays and wipes to ensure the most hygienic change possible but it does ache my heart to think how my back will feel doing these lifts and how unfair it is on my daughter.

Smith-Magenis Syndrome Awareness Day

SMS, a rare syndrome caused by a deletion or mutation on section p11.2 of the 17th chromosome, causes many behavioral abnormalities that can be extremely stressful for the families affected by this condition.

November is the designated Smith-Magenis Syndrome Awareness Month, with SMS Day being celebrated around the world on the seventeenth.

“A lot of focus is given to strategies that will help our families cope with the challenging behavioral difficulties of SMS,” PRISMS executive director Emily Fields explains, “but we also want to recognize the many positive attributes people with Smith-Magenis syndrome bring to our communities.”

Those SMS Superpowers are the ability to love everyone, performing without sleep and beginning each day anew.

However Jackie, 25 and born with Smith-Magenis syndrome, is not sporting her super hero shirt just for awareness.

She has a unique connection to the Justice League.

“I know Batman,” Jackie mentions nonchalantly.

“You know, Ben Affleck. He was at my gym. We worked out together.”

In 2014, Ben Affleck was in Jackie’s hometown for filming of the psychological thriller, “Gone Girl.”

During that time, he began preparing for his next role as the crime-fighting billionaire Bruce Wayne.

And he needed a place to work out.

He found that place at the medically integrated facility, Fitness Plus. It is part of the Saint Francis Medical Center where Jackie’s mom, Bernadette Huston is employed.

Fitness Plus boasts the area’s largest indoor track and four different pools available for all types of water exercise.

“It’s a great facility,” Bernadette explains. “It’s open for employees and patients of the hospital, but also membership is available to the public. So, we have people of all different abilities working out together in the same space.”

And that is how two superheroes, one with Smith-Magenis syndrome and one with an Academy Award, met in a weight room.

Not that Jackie is all that star struck.

“He was just really nice.”

After another moment she adds, “And cute!”

For more information visit Prisms.org

On Your Birthday

Your presence here over the last six years, in this world and in my life has had more impact than you could ever know.

You have made me a better person and on your birthday, we celebrate you!

On your birthday, I can remember the very moment of your birth.

As your Daddy and I awaited your entrance with excitement and fear, I desperately needed to hear your first cry.

Seconds dragged on for what felt like hours, and then, I finally heard it.

The sweet sound that I had worried for weeks that I may never have the privilege to hear.

You had made it into the world and your cry was the most melodic sound I had ever heard.

You came in as a fighter, and you have been a fighter ever since.

There are things that I once imagined we would do on your birthdays, like seeing you blowing out the candles, watching you eat birthday cake, and running around with your friends.

As time has gone by, I realize those ideals of a birthday celebration are inconsequential.

You have opened my eyes to what is truly important.

As long as you’re here, I will proudly blow out those candles for you.

I will feed you icing off of your cake, along with some ice cream, and it will be an honor.

On your birthday, I reminisce on the early days of our journey together.

You were so tiny. I was clueless and afraid and I wanted to learn everything I could so that I could be the Mommy that you needed.

The Mommy that you deserved. I am still learning.

We started down a road into a whole new world together.

As we continue down this road of life, I will graciously carry you. From now until my own body fails, I will carry you.

I will also push you to reach your goals. You have a fiery tenacity about you…it serves you well with the challenges that you face.

I have seen you tackle obstacles in your way one after another and rebound like a warrior. All the while, laughing and smiling. You make my heart swell with pride.

I will always have your back and help you reach for the sky.

On this day, your sixth birthday, I celebrate the incredible, charming, strong and joyful person that you are.

You are truly a gift from above.

When I imagined having a daughter, I never fathomed that I could love her as much as I love you.  I am thankful every day for you.

HAPPY BIRTHDAY, RYLEIGH xxx

That Kind of Autism

My heart sinks when people conjure up the wrong image of, “autism”.

Someone, ‘quirky’, with struggles, but in the right environment they can do OK, maybe even discover that special gift that is associated with autism.

But that’s not my son’s autism.

Then when people finally meet my son, I see it hit them, yeah you weren’t expecting that kind of autism.

My son is the other kind of autism, the severe kind that people find hard to understand.

The kind that when he’s making his noises in public people divert their eyes because they don’t know what to do.

Or worse, they stare!

My son doesn’t speak or play with friends, he wears nappies and uses his fingers to eat.

His hands and legs don’t work that good.

He screeches and makes random noises.

Flapping and stamping his feet.

My son is nine years old but inside is still only one.

Yes that kind of autism.

When he was little he never smiled or responded to people, so when strangers smiled and said hello to him they would quickly give up because they got no response.

That’s my toddler you gave up on.

It might not show but he can still hear you.

He is the child that doesn’t get invited to parties or play dates.

The child people stopped talking to because they gave up.

The child that had no other option than to attend a special school.

His home is filled with disability aids, sensory toys and a wheelchair.

For a while I felt crushed when the conversation turned to autistic people having special gifts.

Like it was something that was expected.

I was even asked on numerous occasions what his gift is!

“Oh, he is a gift – to me”.

But he does have a gift.

A beautiful, magical gift. The best kind.

His smile – it’s like a magic potion, one of those smiles that takes me away from it all, that makes everything OK.

It melts me and heals me all at the same time.

A smile that clears my view so I can see the stuff that really matters.

My son has that kind of autism and the most perfect gift.

Refresh and De-Stress

There are so many clichés out there like, “Happy wife, happy life,” and, “If mom isn’t happy, nobody is happy.”

While families can look different from one another, there is a sense of truth to those cliché statements if your family unit contains a mother or father who is a caretaker for a special needs child, maintains the household, organizes and tracks everyone’s schedules and activities, schedules and attends doctor’s appointments, and the list goes on.

These tasks are tiring for parents who are raising healthy, typically developing children.

These tasks can be downright exhausting for those raising children with special needs due to the extra demands that life brings.

I am not implying this makes the children any less of a blessing, but it can make daily life more stressful.

My goal here is to share a few things that have been part of my routine as of late to refresh and de-stress in the hopes that it will inspire you to find an activity or hobby that does the same for you.

Exercise

I have been participating in a class at the local YMCA that combines yoga, Pilates, and Tai chi.  It has been a great activity for me as it makes me feel calm and centered by the time the hour has passed.

I’ve never been the type to go out and run five miles to feel like I’d had a good workout, but this class combines strength with relaxation that makes me feel less stressed.

Whether it’s kickboxing or pilates or spinning class, find a positive outlet for your stress that will bring you into better health, which is good for you and your family!

Friend Time

Moms need time together.

Dads need time together.

There is something about a group of girlfriends indulging in snacks and chatting that can refresh me differently than a date night with my husband.

My closest friends and I try to make it a priority to get together for girls movie night, or go out for coffee to catch up and spend time being friends and adults.

This is a welcome break from being, “Mom”, for a couple of hours on a Friday night once in a while.

I encourage you to make time to connect with your closest friends – the ones that you can laugh with until you cry, tell old stories with, and leave feeling like you got a bit of yourself back.

Hobbies

I recently participated in my first craft fair.

While I didn’t sell as much as I had hoped at the craft booth shared with a friend, preparing all of the items was so much fun for me.

I have always enjoyed being artistic and making things, so putting together some home décor items and gifts is a creative outlet for me that there has not always been time for.

I didn’t make time for it.

Having the deadline of the craft fair held me accountable to getting everything ready on time, and that was good for me. It would do all of us mamas and dads good (and our families too) if we scheduled a deadline or set aside time for ourselves to do a hobby we enjoy.