With Christmas and New Year over, the focus switches to making 2024 a productive year of growth and good choices.

As can be typical in a household where ADHD and Autism is spread across the family, we can go a bit overboard on buying, putting up decorations and making too many plans. We love the festive season and all that comes with it, but this also means clutter, and overstimulation.

As the years go by, we’re getting better at planning this period as a family every year. Along with all of the pre-Christmas excitement we experience a lot of anxiety around items coming into an already full and overwhelming household which can lead to very emotional struggles and sometimes arguments.

There are three important stages of decluttering that help us through this period giving us the best gift of the period – Clarity, and the ability to enjoy what we have. The decluttering stages look like this:

1. The Pre-Christmas Declutter

This is one of our most important preparations for Christmas. This helps us to get through the season and enjoy the big day. Get rid of anything that is lingering or hanging around – remove anything that is likely to be replaced at Christmas – make space for what is inevitably going to come and fill your world.

2. The next declutter is just after Christmas

Now we know what we have received. Do the gifts replace anything? can we get rid of something older to make way for new things?  Enjoy new clothes – sell or donate old ones, make strong decisions on old items if you need to find space for new ones.

3. Now we’re here, in a New Year

HOPEFULLY we haven’t already become overwhelmed and overstimulated and had arguments about it all (we have but, probably less disagreements than we would have had). It’s time to get clear for the year – declutter the Christmas decorations as they’re going away, things we didn’t use, things past their best etc. The house – does the kitchen need rearranging? – the cutlery drawer lives in the back of my mind, straighten that out – we’ve got far too many random mugs, they’re not coming to 2024 with us. Now is the time to straighten the lines.

Having a new year and new things and a new purpose is all very good, but its also an important part of the process that the old gets stripped away. Things like grief, trauma as well as ADHD and Autism can make this really difficult but the alternative of hanging on to everything is far too destructive. Here’s to a New Year of clarity, decisiveness and hopefully, peace.

As my social circles have expanded over the years, I have become more conscious when it comes to festive greetings. Instead of wishing people a happy Christmas on an email, I tend to wish them a relaxing break or a good holiday. This is because, particularly when I am talking to people professionally, I don’t know if they celebrate Christmas. I was responding to a parent carer recently with whom I work on a university research project, and started to write ‘I hope you had a relaxing break’ only to realise that of course this would be entirely inappropriate. She has a disabled child. I imagine she is feeling the relief of the holidays coming to an end as much as I am.

It’s important to say here that we had the most gorgeous festive season, our little girl had a seizure-free Christmas and Boxing day which was a treat.

There was so much warmth, cosiness and cheekiness.

I loved it. But I am also still in the middle of what feels like a giant exhalation as school has started again. I feel utterly strung out, I have sensory overload from the constant and very loud demands, the grabbing of my hands whatever I was doing, being dragged off the sofa every time I tried to be still. It is not possible to describe the mental, emotional and physical exhaustion this causes. If parent carers are reading this, I don’t need to describe it; they know.

We had been unable to find an enabler this Christmas holiday so, while we had care support at home, we had no respite. There’s a huge difference between care support (which I would say takes the pressure off about 20-30%, depending on the carer’s experience with my child) and respite or enabling which, for the hours my daughter is out of the house, removes 99% of the pressure (I reserve 1% for the anxious phone-watching).

I thought we could manage it.

While we did physically get through it, I am still taking stock of the price we have paid by having no break. I have taken myself off for more than a few walks in the pouring rain to get some respite. During this time I have concluded that it makes absolutely no sense that special schools do not have in-built provision to support students and families over the holidays. I have extensively written on the fact that special schools are far more than simply schools.

They provide essential care and respite, much more aligned to the essential services of a care home or day care centre, where repeated and prolonged shut downs would be unimaginable. The school day is a lifeline for families like mine. Yet it is, at regular intervals through the year, snatched away for weeks on end, just because that’s what schools for non-disabled children do.

It’s nonsense.

My little girl has no understanding of why her school taxi suddenly stops coming, and why she can no longer see her friends. Due to her severe learning disability, I have no way of explaining this to her. She then looks bewildered and confused when it starts up again (while I am close to tears with relief, and sadness at needing school so much). I would love future governments to stop and consider this, and for formal holiday respite to be in place for every special school in the country. Just one or two optional days a week would be life-changing for disabled children and their families and potentially could stop many reaching crisis point during the ‘breaks’.

Some charities do great work on highlighting this issue but I would love to see a clear proposal and lobbying for real change that tackles it properly.

Leaving families with wildly varying resources to recruit, train and manage private enablers (if they have been lucky enough to secure funding in the first place) is unrealistic and unfair. We need a more equitable, predictable and reliable system to remove the pressure. It’s way overdue.

We all know the tiring process of advocating for our special children. It can be exhausting and feel like nothing but another battle. That’s what I have found myself calling some of these instances, where I have fought for her needs.

I feel like my daughter’s entire life has been a battle of advocating over the years. Somehow, I have the strength within me to not give up and keep fighting. I feel I have been divinely guided in many of these instances. Finding ways to proceed in which I ended up “winning” to my surprise.

I sometimes felt alone in this process, only to discover there was much help out there. There are rights we have that the schools never tell us.

We must dig and find things out for ourselves.

We can request an IEP meeting (or any school meeting) at any time to review our children’s needs. We have the right to make any changes we feel necessary and to ask for any needs we feel our children have. If they are denied these needs, we can appeal.

My daughter had PT and OT all through elementary school. When she entered junior high school, they took both away. At this time, she could not do the buttons on her jeans, so I had to replace the buttons with Velcro. The Velcro never lasted. I asked the school to give her OT so she could be taught how to do her buttons.

I was told “no” and ignored.

I finally wrote a letter to the State of Michigan with her needs, I also included the superintendent, along with the principal and her teacher.

I was provided with a meeting which everyone in the letter attended. The principal looked at me and said, “you did not have to do all this”. I was floored that she would say that because she ignored my requests. I told her “yes, I did, you chose to ignore me.” My daughter was provided the OT she needed to do her buttons and was able to button her jeans within 2 months.

I share this story because it is a reminder to me to never give up when she has a need. It took about six months to get that resolved, but I did it and it gave her so much independence.

There are many more stories. The point of this is to remember to seek out the help you need and never give up. Connect with other parents who have children with special needs, especially those who have been on the journey longer than yourself.

They have the best advice, and we can learn what to do and not to do from them.

There are advocacy groups who will help in addition to attending school meetings. In the State of Michigan, we have the ARC The Arc | For People With Intellectual & Developmental Disabilities. I have called them many times even if it is just for advice or information. They have attended IEP meetings with me.

I know some parents have had to go as far as obtaining an attorney to help with advocating for their child.

I am not sure why there can be so much difficulty with getting their needs met, but there is.

I suppose it boils down to the cost and not enough staff to help.

With insurance companies, it can be more challenging. I am beginning a battle to get my daughter more PT so she can gain independence. Insurance feels she only needs a certain amount. This is a longstanding issue for her, and she needs all the help she can get.

“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”
                                                                                                                                                              -Thomas A. Edison

In an ever-evolving society, language plays a pivotal role in shaping our perceptions and attitudes. When it comes to discussing disabilities, the words we choose can have a profound impact, positive or negative, on people and their communities. Terminology, and particularly clinical terminology, has undergone a significant transformation over the years, reflecting a new collective understanding and respect for diversity. This blog aims to shed light on the evolving language of disability, the reasons behind the shift from terms like “disabled child” or “special needs” to “additional needs,” and the challenges companies face in adopting a universally accepted terminology.

The Evolution of Language:

Language is amazingly dynamic, and its evolution often reflects changes in societal values. In the realm of disability, terms like “disabled child” and “special needs” and “even abnormal” were once commonly used by healthcare workers, but in recent years they have become increasingly contested. Many now find these terms outdated and even offensive due to their perceived stigmatization and labelling. As our wider society strives for inclusivity and respect, the language surrounding disabilities has adapted to reflect these values.

Person-centred or person-first language:

Person-centred language grew from the disability rights movement in the 60s and 70s which played a crucial role in advocating for the rights of people with disabilities. It is a means to emphasise the individuality and dignity of people rather than focus on or be defined by the disability, recognising that a disability is just one aspect of a person’s identity and should not overshadow their unique personality and potential. For example, instead of saying a ‘disabled child’, person-centered language would put the emphasis on the person first and encourage the use of ‘child with a disability’. This subtle shift acknowledges humanity before disability and is widely accepted in the physical disability community.

The Shift to “Additional Needs”:

In recent years, there has been a noticeable shift towards using the term “additional needs” to describe individuals with disabilities and “typical development” for those who do not require additional assistance or are developing as expected. This term emphasises the idea that everyone has unique requirements and acknowledges that for some people, these needs go beyond what is considered typical. “Additional needs” is seen as a more inclusive and person-centered phrase that focuses on the individual’s capabilities rather than their limitations.  However, others would argue that the term disabled is more direct, and that using clear and concise language helps everyone to acknowledge and embrace disability rather than seeing it in negative terms. Indeed, the social model of disability would suggest that rather than disability being a trait inherently linked to an individual, it is created by societal barriers, attitudes and structures. In the world of complex paediatric disability, this view is rare.

Understanding Children’s Needs:

At the heart of this debate is what works best for children during their childhood and for their future. It is crucial to recognise that regardless of their abilities, all children have fundamental everyday needs: to socialise, to have a warm loving family, to have access to healthcare, to be educated, to feel safe, to have fun. This is exemplified by the F-words work (Functioning, Family, Fitness, Friends, Fun, Future) by CanChild. These needs are not “special” or “additional” but rather part of the normal spectrum of human requirements for growth, development, and well-being. What sets children with disabilities apart is that they may require varying degrees of assistance to meet these needs.

Navigating Language as a Company:

As a company, adopting a standardised language for disabilities poses challenges. While “additional needs” may be a modern and inclusive term used in healthcare, the reality is that not everyone has embraced this shift, for example most schools are still “special schools”. Also, some parents and caregivers still use terms like “special needs” when searching for products or services. At Leckey and Firefly we have taken a decision to strike a balance and use a mixture of language in our social posts and across our website.

Individual Preferences on Labels:

It’s essential to recognise that language preferences surrounding disabilities are highly individualised. What one person finds empowering; another may find disempowering. Some individuals may prefer person-first language, such as “person with a disability,” while others may embrace identity-first language, like “disabled person.” If you hear our clinical team through our Leckey Learn webinars or face-to-face talks, they will probably use terms that they feel most comfortable with such as ‘additional needs’ and ‘typical development. Acknowledging and respecting these individual preferences is crucial for fostering an inclusive and supportive environment.

Conclusion:

In the journey toward inclusivity and respect for individuals with disabilities, language plays a crucial role. While we feel the shift from terms like “special needs” to “additional needs” reflects a positive change, it’s important to acknowledge the diverse preferences within the community. As a company, embracing a mixture of language is a practical approach to ensure that we are accessible to everyone. By fostering an environment of understanding and flexibility, we contribute to a society that values the dignity and worth of every individual, regardless of their abilities, recognising that all children have a range of needs that require varying levels of support.

Laura Doyle

Clinical and Marketing Director

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.

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.  

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.

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.

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.