Empowering abilities: Benefits of plyometric exercise for kids with additional needs

We’ve all heard about the benefits of aerobic exercise and strength training, CrossFit and interval workouts, but are you aware of the payback for plyometric exercises?

What are plyometrics?

Plyometric training is a form of exercise which involves rapid contraction and extension of muscles, with the aim of developing strength, power, and muscle control. They usually involve very quick explosive movements with the primary goal being to improve the efficiency of the neuromuscular system (the interconnected nervous system and muscular system, and taking advantage of the elasticity of muscles and tendons to improve the effectiveness of the stretch-shorten cycle.

What is a stretch-shorten cycle?

The stretch-shorten cycle is a common muscle action whereby the muscle rapidly lengthens (eccentric contraction) in a controlled manner, followed by fast powerful shortening (concentric contraction). Think of doing a regular bench press, if there is poor concentric control then the weightlifter will be wobbly as they push the weight away from their chest. Equally if someone has poor eccentric control, then during a bicep curl they will be shaky as they lower the weight down. Clearly the heavier the weight the more likely that poor control becomes evident and it’s the same for children.

Plyometric exercises offer numerous benefits for children facing mobility challenges:

Enhanced bone density: contrary to perceived opinion, bones are not static but are dynamic tissues, constantly reshaping and remodelling depending on the forces that they experience. Plyometric exercises stimulate bone growth and bone density which is particularly beneficial for children with reduced mobility where weight-bearing activities are generally less frequent and less varied.  

Improved strength and coordination: As plyometric exercises involve rapid muscle contractions; they develop muscle strength and muscle control. Greater control will have enormous impact on everyday function, improving independence in daily life.

Increased cardiovascular fitness: like any physically demanding activity, plyometric training will promote heart health and endurance. This is especially beneficial in improving stamina and energy levels of children with additional needs who have less opportunities to exercise.

Plyometrics can be incorporated into many everyday activities and here are examples of some adapted exercises:

Seated jumping jacks: while seated, have your child perform modified jumping jacks, trying to control their leg and arm movements. Use resistance bands to increase the effort.

Bounding: when in their walking frame, encourage your child to perform large, exaggerated strides, with powerful push offs. The bigger the stride the better.

Box/kerb/sidewalk jumps: Assist your child in jumping up and down, or down off a small height. It’s perfectly ok if you are supporting some or most of their weight so long as they are partially weightbearing and trying to react to the jump. If there are puddles on the ground, then it’s going to be even more fun.

Balloon taps: tie a balloon to a string and encourage tapping or boxing. Work on speed and co-ordination.

Medicine (or any heavy weight) ball throws: the bigger the object, the easier it is to catch. You could start with rolling it on a table or tray and encourage quick movements to push or catch the object.

Parents often seek new ways to enhance their child’s development and plyometrics give you another tool in your toolbox. Participating in a group exercise in a supportive environment will provide opportunities for social interaction for both you and your child.  You know your child best so tailor the exercises to their needs and incorporate them into their daily activities, and of course if it’s not fun, it’s not going to work.

Going with the flow this festive season

Before I started my role as a parent carer (one for which I did not apply, was inexperienced in, and felt ill-equipped), I took for granted, like many of us, routine, predictability and to largely have control over my day to day. The day my daughter had her first seizure was the day that this control vanished. I knew in my gut that things would never be the same again, and that I could not stop this bullet train of change that I found myself on. I did try.

I thrashed around in my head, trying to think of a way to get out of this situation which seemed impossible and horrific to me. Googling cures, outcomes, possibilities, support, desperately trying to grab on to something solid and certain. But there was nothing. Everything was in disarray. I had to give up for a bit, to relax and stop fighting. Like devil’s snare in the Harry Potter books, the harder you struggle against it, the worse it gets.

I found that going with the flow released me.

Of course, I haven’t given up fighting completely. I have simply stopped fighting against what I can’t change. I still reserve and deploy plenty of fighting energy to get my daughter what she needs, and to advocate where I am able, for other families and the childhood disability community.   Giving up the fight against things I cannot control however has been liberating. I still feel a pang of frustration, annoyance or anger when my plans are scuppered by a surprise seizure, but I quite quickly let it go now, reorient myself and move forward. Importantly, I make a mental note to rebook plans or treat myself in some other way as soon as possible when the crisis has passed. I make sure to do this; I’m strict about it.

I see it as vital to my wellbeing.

I also consciously try to go with the flow when my daughter’s disability causes other life stresses;  broken goods in a supermarket, lying on a pavement (or road), spilt (deliberately poured) liquids, ruined clothes (hers and mine), three changes before getting to school, TV being pulled on the floor. I don’t always manage it, but for the most part I do. I think what helps me is having a conscious policy that it does not matter. I’ll sometimes say that in my head – ‘this doesn’t matter’. A bit like when I get a parking ticket, I do not have the reserves to expend energy on getting annoyed or angry. Those feelings are horrible and simply add stress.

This ‘going with the flow’ mentality has taken me years to learn and I still have to work hard at it, but I know it helps me hugely. In the same spirit, when I do of course find myself screaming internally or stamping my feet when my plans have dissolved once again, I will not let myself feel bad about my reaction.   This festive season I will be drawing on all of this learning to remind myself that, Christmas is ultimately just a day and, despite what the advertisers will have us believe, most people’s don’t happen without a bump or two along the way. Here’s to a messy, bumpy, happy Christmas.  

Feeling festive

There is so much pressure at this time of year to feel festive. Social media provides us with so many wonderful accounts of people who basically are breathing out Christmas! They seem to be able to create wonderful Christmas experiences and it then snowballs and the expectation to join in becomes immense.

This time of year is my absolute favourite. I love the lights, the smells, the food and all the time spent with loved ones. Since being a parent to a child with a life limiting disorder it’s become increasingly more important to make the most of each precious moment at this time of year. I have however had to manage my expectations over the years and have tried to not put pressure on myself to ensure that it’s the most perfect experience.

We try to keep it very low key and choose generally just one trip to see Father Christmas not multiple. We make one special day of it and it doesn’t matter where we see him. Some years we’ve done big days out and others we’ve visited him in the local display in town. Each as magical as the other and you really don’t need to worry because each display creates wonderful memories no matter how big or small.

The smile on my children’s face is the same wherever we go.

In the past I’ve done advent experiences and done something festive each day of advent. Some years we’ve forgotten calendars and have to add in as we go along! It really depends what type of time we’re having when December hits!

Some years we’ve all had lovely matching pjs and other years we’ve worn the same ones from the year before. This however meant that we could show the children that you didn’t need to buy new all the time and that reusing is just as good.

Some years I’ve made sure my children have beautiful crafts to make and other years we’ve done nothing. Some years we had fun baking lots of festive treats and other years I’ve had to throw out the mincemeat further on in the year as it didn’t get used.

What I have learnt along the way is to not have to conform to what’s around us.

Not to put that pressure on to create the perfect Christmas. Just being together is magical enough. This year will be no exception as we’re currently still in hospital after 9 weeks just hoping to even make it home to be together.

We had to cancel our Christmas break away this year which was really hard as it was our only trip away for 15 months as a family. We don’t get away much and we chose Christmas this year to be our one together.

Our lives are super busy day to day and adding in Christmas or any celebration can mean you really don’t feel like being festive.

This year I’m trying to make it a little more festive in hospital, which is no mean feat, but I’m also not going to make myself feel bad if we aren’t conforming to all those perfect Christmas’s that happen across social media. Our lives are different to those families already so as per everything else we will celebrate in our own special way!

Please just do what you can this Christmas and enjoy those special moments of just being together no matter what situation you find yourself in.

What’s in a name?

Having a medically complex kiddo generally means that you need to stock the equivalent of a small pharmacy in your kitchen. One of the delightful quirks of anti-convulsants is that different patients respond to different brands; the active ingredient may be exactly the same, but there will be some difference in the formulation that means that they HAVE to have a specific brand of that medication.

In general, this is fine. But sometimes, it can cause headaches. Literally. The Dude is no exception. Of the medications he takes, there are two which absolutely must be specifics brands. As this is specified on his medical notes, the pharmacy are able to order the correct brands despite the significant difference in cost this incurs. This has been the happy situation for YEARS.

And then out of the blue, we learnt that one of the brands was changing its name. To a ‘branded generic’. Oh dear.

In case you are blissfully unaware of generics vs branded (oh how I envy you), allow me to briefly explain. The ‘generic’ drug is the active drug without any bells and whistles. A good example is Nurofen compared to ibuprofen. They are both the same active drug, but the branded Nurofen is usually more expensive than standard generic ibuprofen tablets. The same goes for other medications, such as anti-convulsants. In general, the generic versions are (a lot) cheaper, and so prescribers will usually put down a generic version instead of the brand unless there is a good reason why the branded version is essential.

Despite the name change, as the formulation hasn’t changed, the Dude still has to have this particular drug. But now it doesn’t have a specific brand name, which makes ensuring that correct one is ordered a whole lot more complicated. It would not be an understatement to say that my words on hearing about this situation were not repeatable!

There are times when I wonder if the Powers That Be genuinely do these things purely to push already stressed parents to the brink of sanity… safe to say, the Dude’s GP shares my thoughts. As things stand, all we can do is order the generic version of the drug and have the prescriber ensure that they write on the prescription that it has to be the generic made by the specified manufacturer. We can only guess at the manufacturers’ reasons for this change, but we do know that it will cause considerable issues for us and the prescribers for many months to come.

The Importance of Genetic Testing and How it Changed Our Life

I had a very difficult labor and delivery, which resulted in a loss of oxygen for my baby. She was not breathing when she was born. Thankfully the doctors saved her; however, we discovered at an early age of 18 months that she was not developing as she should have been.

She had feeding issues, which resulted in the need for formula. She choked on her formula and her own spit up. Choking that caused her to stop breathing. She choked on her food until age seven and still has trouble with swallowing. The Heimlich Maneuver became a common daily practice in our home. The doctors attributed these things to her loss of oxygen at birth.

There was so much more we discovered along our journey in life as Emma got older.

She is speech impaired, and at a young age had to have many teeth removed due to overcrowding. Overstimulation and aggression are also some things we have dealt with. A lot of these things are not much different than her friends.  

Some of these things fit into the mold of “lack of oxygen”, but for me, I always felt some things did not, such as her teeth issue. Yet, we went with the diagnosis of lack of oxygen.

Emma is now 31 years old, but when she was young and we were discovering her special needs, as a young mother, I blamed myself for not asking for a cesarean. I told myself I should have known labor does not take that long. I spent many sleepless nights being so angry at the doctor who did not do a cesarean. As the years went by, I, for the most part, healed the pain and regret. I say for the most part because those things are always in our subconscious.

I decided to make the best of my life with my beautiful daughter.

The genetic testing happened by the Grace of God. I had been trying to get Emma more physical therapy, but with the diagnosis of “loss of oxygen,” insurance was not seeing the need. Those who know Emma can see the need, but not the insurance company. Her physician recommended genetic testing to see if there might be something there. I said, “Okay, but I highly doubt there is anything.”

When they called me several weeks after the testing, I had forgotten about it. Imagine my shock when I was told that my daughter has SATB2-associated syndrome (SAS), also known as Glass Syndrome. When I was told, I became very emotional, as the first thing that came to me was how I blamed myself and the doctor. A cesarean would have made no difference in my daughter’s life.

I know genetic testing does not apply to everyone who has special needs, but I write about this because it can apply to many.

Now we know what type of medical care she needs

There are so many things we would not have known that we now know to watch for medically, such as cardiac testing, and bone density. I still have much to learn about SAS Syndrome, but I am grateful I know and can educate myself.

There is so much more to this story that I cannot share in this one blog. But what I can say is, this knowledge may be something that could save her life as the future unfolds.

When Emma was born, they had not come this far with genetic testing, but now that it is so advanced it has been a blessing for us and can be for many more people. I am grateful for what they do.

The Big Swing

For many years, Taz, my daughter, has loved swings at the park. Like many children with a learning disability, she enjoys the sensory feedback and the motion. She particularly loves the toddler swings with the little frame around her middle for security. She’s now nine and, despite some passionate attempts to propel herself into them, has outgrown the toddler swings (along with the toddler seat in supermarket trolleys, much to her indignance).

We have had to graduate to the basket swings that not all parks have. She enjoys these but not as much as the little swings. I had always assumed she would need these types of swings forever. Last week, she was watching her sister on the big swing (the typical swing that most children eventually learn to use). She walked over to the one next to her sister’s and tried to get on, we duly lifted her on and stood right behind her while she held the chains.

She wanted to be pushed.

We started to gently push while I welded my hand to her back to stop her falling out. She pushed me away. Before I could absorb the scale of the achievement, we were pushing her on the big swing; her, and her sister, looking absolutely delighted.

She held on tight and swung for at least ten minutes, we drank in the joy and took loads of photos. I never thought she’d be able to do that. I often forget that despite her learning disability and the huge setbacks and regression that seizures can cause, she can still learn and progress.

Her determination and spirit is fierce. 

About a month ago Taz’s new enabler took her out. She returned home quite shaken up (the enabler). Due to a malfunction with her car, the car keys got locked in the car along with Taz at a supermarket petrol station. Thanks to some extremely quick thinking, she soon had keys being driven to her and someone on hand to safely smash a window in case fast access was needed to Taz (e.g. a seizure).

In the meantime, a member of supermarket staff who was among the team of people she’d recruited to assist, asked if there was any way they could encourage Taz to let herself out of the car seat, crawl across the back seat and open the door (there was a child lock on Taz’s side). If this had been me, I’d have said no way, my largely non-verbal girl simply does not have that level of understanding. But our enabler, as all the best support staff and educators do, has a far more open mind about Taz’s abilities and wanted to give it a go. She suggested a packet of Wotsits, Taz’s most coveted food (she’s rarely allowed them on the ketogenic diet she is on for her epilepsy).

A grab bag was produced and the coaxing began.

Cutting a long, and presumably very gripping scenario short, Taz wiggled out of her booster seat, made her way across the back of the car and calmly opened the door. My eyes popped when Taz’s enabler relayed this to me shortly after Taz strutted through the door with her giant bag of Wotsits. It gave me a lot to think about.    

The obvious moral of this tale is to presume competency when it comes to learning disability. I’ve done a lot of thinking lately about what this means for us and I know I need to open my mind about what our little livewire can achieve. Who knew how powerful Wotsits could be?

Deterioration and regression

Deterioration is something no-one wants to deal with. That means things are changing. It means life is becoming more and more precious. It’s something you spend your whole time trying to avoid when you have a child with a life limiting disorder. However, it’s something that actually you can’t do anything about.

There have been many times over the last 13 years where we have seen Ethan regress. This has mostly been skills he’s learnt along the way that then after a period of illness or increased seizures, just disappear. Some he eventually relearns along the way, but most he doesn’t and they are gone for good.

We celebrate every single milestone with Ethan because every tiny achievement is massive for him.

t’s also incredibly special because we don’t know if that skill will stay or, like the others, disappear as well. It’s so disheartening when this happens, for us as parents, but I do also wonder whether it’s frustrating and disheartening for Ethan also.

He works incredibly hard to gain these skills and I’m almost certain that he feels the achievement and excitement that we do too when he achieves these milestones. What I don’t know though, is whether he feels that sadness that he worked so hard for a skill and for one day not to be able to do it again.

What if one day you woke up and you couldn’t stand up, or you couldn’t use your hand, or you couldn’t move in a way you could the day before? That’s got to be scary right? It’s got to have some effect on you. Maybe that’s why he doesn’t go on to re-learn the skill. Or maybe it’s because that part of the brain doesn’t work that way anymore.

It’s something I’ll never know and that’s really hard.

For a lot of Ethan’s life we are re-teaching skills he’s learnt before and some we don’t revisit because maybe it’s not as important that he has that skill and there are new skills to be learnt all the time.

Not only does Ethan regress with skills but actually his health deteriorates and he slowly becomes less able to be as well as he was before an acute illness or seizure period. It is something we’ve faced a lot over the last couple of years. It’s something that is hard to watch. It’s harder than just losing the skills, because you are losing a bit of him each time.

All of this combined makes every moment together more special. It means that every single day needs to be celebrated for all those small wins. All those things we take for granted suddenly become the big things.

The things we aim for and hope won’t disappear.

If you focused daily on what your child has lost or can’t do anymore then it makes for a very depressing life. Some days it’s harder than others to dust yourself off and that’s okay. But for the most part you celebrate each day your child is still here as a massive win and take that as your reason to carry on fighting through those regressions and deteriorations.

The Monster We Live With (Epilepsy)

November, in case you somehow missed it, was epilepsy awareness month. Our journey with epilepsy began on a hot August morning in 2011; until that day the thought that my child might experience a seizure had never crossed my mind.

Over the years, we’ve learnt how cruel this monster really is. My beautiful baby boy, once so smiley and with a laugh that absolutely melted my heart, has had to fight every day of his life. It isn’t just the outward seizures you see, it’s the impact of near-continuous epileptic activity in his brain playing havoc with his development.

It’s seeing him fall asleep during the day from sheer exhaustion, because the monster doesn’t stop just because its night time. It’s seeing the frustration in his gentle face as he struggles to control his limbs, only for another random muscle spasm to cause his arm or leg to suddenly jerk. And it’s holding my baby, long after he’s outgrown the baby stage, gently stroking his hair and whispering that it’s ok, that he’s safe, that we’re with him, as yet another seizure rips through his body.

Epilepsy is incredibly cruel.

However, it is because of this awful disorder that we’ve met some of the most amazing people in our lives. We have an amazing community of friends. Our boy has people routing for him from all corners of the globe. He is, quite simply, our hero. He refuses to give up.

Once the seizures have passed on for the time being he simply gets back to whatever it was he was doing, be that boardgames, LEGO, or watching TV. His smiles are all the more precious because of how much epilepsy has stolen from him. I would be lying if I didn’t say that epilepsy has stolen far too much, and I’d give my last breath if it meant my son could be cured of this disorder; but much as I wish it were me and not him it isn’t possible.

There are still so many misconceptions about seizures and epilepsy in general; no, it is not contagious. He cannot control when the seizures happen. Despite his physical limitations, my son’s mind is as sharp as flint. Having seizures does not mean he is not intelligent, or that he doesn’t want to do things. We just have to be more creative and work harder to make things possible. He’s an appalling flirt. And he is our everything.

If you don’t know seizure first aid, please go and learn it. It’s very simple but it could save someone’s life; it doesn’t matter if you don’t know anyone with epilepsy. At the very start of my son’s life, we didn’t either.

Awareness SAS Syndrome (Glass Syndrome)

According to Michigan Medicine, University of Michigan (www.uofmhealth.org/) “Almost all individuals with SATB2-associated syndrome (SAS) are reported to have the disorder as a result of a spontaneous, non-inherited event (de novo).”

I would like to bring more awareness of SAS Syndrome because it took 31 years before I found out this is what my daughter has. There are so many things that can be medically maintained if one is aware of what to monitor. This has been valuable information for us. Information that could potentially be lifesaving for Emma.

SAS is a highly variable condition, and not all individuals with SAS will experience each associated feature. However, 100% will have developmental delays and intellectual disability with more than half experiencing severe developmental delay and/or intellectual disability. 95% will have speech delay or no speech. Most individuals with SAS are also reported to have mild, nonspecific facial features, such as the red part of the upper lip being thin, low-set ears, or a long face (www.uofmhealth.org/).

About 55% of individuals with SAS experience behavioral issues, with most having friendly personalities.

Some experience autistic tendencies, aggression, hyperactivity, difficulties with sleep, sensory issues, skin picking, or obsessive tendencies. Dental anomalies are present in 72%, which can range from abnormal shape or size of the upper central incisors and can also include dental crowding. 76% have palatal abnormalities (www.uofmhealth.org/). For example, my daughter has a split uvula. This was identified when she was a baby; however, not one doctor could explain it, nor did they feel it was a concern.

The importance of being aware of SAS Syndrome is that there are many things to monitor medically, or it can help explain possible things that could potentially happen. SAS individuals can develop seizures, gait abnormalities, skeletal anomalies, bone density, and cardiovascular defects. According to Michigan Medicine, there is still much to be studied and learned about SAS Syndrome.

I am grateful to be aware of my daughter having SAS Syndrome. I have lived in the dark for 31 years and have walked this road alone. It is my hope that if any of you feel this might be the case for your child, please seek genetic testing. There is help, education, and support out there that I had no idea about.  Here are some resources:

SATB2 Gene Foundation
Unique: SATB2