January. Damp, grey, about 9547 days long… and my birthday month. After the excitement of Christmas, I actually don’t mind the slow pace of the first month of the year plus I’m more than a little thankful to have reached the grand age of 45 more or less in one piece! 2023 was one of our most difficult years to date – our amazing boy had to deal with significant worsening in his health, and the majority of the year was then a battle to keep him well enough for the spinal surgery he so urgently needed.

The last three months of the year flew by once he was safely through that, so to be able to celebrate another complete circuit around the sun with the men in my life meant a whole lot. The New Year always brings mixed emotions; hope for the coming year, sadness for the friends who we lost in 2023, and a potent mix of joy and fear that only families of medical fragile children can understand.

While we are overjoyed that our children are still here and fighting, there is a terrible fear that comes from knowing Winter is still not over and that it could be any one of us grieving.

For us, 2024 is the first year in a decade where we don’t have the spectre of major surgery hanging over our boy. It’s the year the Dude becomes a teenager – may God have mercy on us all – and the year when, with a bit of luck, things will be a lot more stable for him health-wise. The irony that this is just in time for puberty to hit and throw everything into chaos is not lost on me. Last week we had a neurology review with him and realised that with how unwell he’s been he hasn’t actually had his anti-convulsant medications reviewed since 2020!

Unsurprisingly, the dose he is currently taking is woefully inadequate; and thus the boy is beginning his year with a series of dose adjustments to bring his medications up to where they should be. He is less that pleased about this, however the hope is that this will give him much better seizure control again.

From my family to yours, happy new year – here’s hoping 2024 is a kind one, for all of us.

What does a New Year look like when part of you died 3 years ago. In 2020 my youngest daughter Lydia, the sweetest little blessing in my world left us mourning and yearning for her. Since then, only part of me goes into each New Year, each Christmas, each birthday. New Year in particular reminds me that part of me is still in 2020, I can’t comprehend that it has been over 3 years since I held her.

I don’t need other people to be sad or continually sensitive around me, the painful reality lives within me. There is still a part of me in the present, still a part of me that wants to enjoy what is going on in life at the moment. I love and adore my wife Bethan and my eldest daughter Caitlin, and they need me in this year, with them. Lydia loves me, she loves her mother and her sister too and she will want us together, she will want me here for them.

If the question is, how do you move on from child-loss? Then the answer is, you don’t.

You don’t move on, you change, you focus, you try.

Have patience with parents who are grieving – it seems to us that the world has moved on while we can’t. It seems people want to know how we can move on – even an expectation that we should have moved on by now. We’re able to enjoy celebrations but life events always need a moment to remember that our child ought to be here for this.

Sometimes the expectation of continual positivity and optimism is too much, sometimes we just need to be sad, sometimes we just need to remember, we don’t need others to be sad – we just know that a part of us isn’t here -part of us is with the one we long to see. We’ll make the best of a New Year, but we’ll need moments to go back in time.

I wanted to dedicate a post to this form of self-care that I believe becomes even more important when you have a disabled child. It’s dawned on me in recent years that I need to keep as physically strong as possible as our little girl is starting to become not so little. She’s now nine and a meltdown on a pavement is no longer solved by scooping her into her pushchair for safety.

I need to be able to move fast to catch her if she bolts, or if a seizure starts. My motivation is now more about the mental health benefits than the physical ones. I started exercising ‘properly’ about three years ago. Prior to that I dabbled, because I felt I should, I never really enjoyed it and also knew I was not doing enough.

I hated PE at school.

Now I look back, it was because I thought I was bad at team sports, got picked last, and felt like a burden to the side I was on. Not a great way to foster a love of movement. Along with thousands of others like me, it gave me a long-held dislike for all forms of exercise. This was of course illogical as I had conflated competitive team sports with lovely things like going for a swim, cycle or a walk.

Now is the time of year when exercise is talked about the most; I don’t think that pressure is helpful. Here are five tips from me, as a relatively new ‘exerciser’ on how to build it in to your life:

1. Enjoy it.

It’s the old cliché but pick something you like. If you hate the thought of anything, pick the thing you hate the least and give it a go with some things to soften it. For example, walking with a podcast you love (if you want a laugh and virtual company from other parent carers, try ‘The Skies We’re Under’ podcast), or swimming with a friend.

2. Plan

in your next activity when you finish each one. When I finish a run or walk, I mentally calculate when I will aim to do my next one. I normally have a few days break in between. If for any reason I cannot make it, then I reschedule for the next day. With things like classes it’s a bit more straightforward as you can book in advance.

3. Be honest with yourself.

If you are not using a membership, cancel it and do something else. I do classes at my gym but for 6 months had being paying extra to go to the gym itself. I never got there and kept feeling bad. In the end I removed that bit from my membership and stuck to what I love – classes. 

4. Build up gradually.

I can be a bit of an enthusiast and when I first started I got overexcited and did too much, causing me muscle pain.

5. Team up.

Often committing to going for a walk with a friend helps me stick to it. You can end it with coffee and cake then too.

6. Balance it.

1. When I finally discovered running I thought that was all I needed to do. A few injuries later, a wise physio told me that if you are over 40, you can’t just do running, you need to balance it with some strength too, to prevent injury.

The benefits? There are so many. For me it’s my mental health. My anxiety has been so much better since I have had a regular exercise routine. When the stresses of being a parent carer become too much I know I now have something I can easily do to help me. Sometimes it’s a 10 minute walk in the dark and rain, but I never regret it.

What a shocking revelation it is when we first find out we have this special child and realize life is going different than what we ever thought of or planned. The thoughts that go through most of our minds can be upsetting, to say the least. I know I wondered how I was going to take proper care of my daughter. I mourned that she would never have a “normal” life, get married, have children etc…

I hope this reaches those of you just starting out because they actually do have a “normal” life. What is normal anyway? They have a life that is filled with joy, love, and sweetness that other people don’t give out so freely. Yes, they have their challenges, we all do. Yes, their lives are more difficult than most.

It can be a lot of effort for them to get going every day.

The first time I saw my daughter give someone else the feeling of being loved and cared for is one I will never forget. It was when she was only 4 years old. We were at the grocery store and there was a man in a wheelchair waiting at the deli in front of us. Emma walked over to him and put her hand on his shoulder. They looked at each other, eyes connecting without any words. I saw tears in his eyes. It brought me to tears and made me realize the good Lord has gifted her with her “normal” life and a purpose.

Another amazing thing to me is our special needs community goes and does things as difficult as it can be for them. They get up and they excitedly go to school, adult programs, and some even go to work. The difference I see in them is that they love to go and do these things.

They look forward to it.

We all have a purpose on this earth. My daughter’s purpose has been many things, but more than any of them, she gives others love. She has changed me in such positive ways that I would never have gained without her.

I have gained so much confidence and the ability to speak up for not only her but myself. At first, I found I was able to speak up for her without batting an eye. I remember, my mother said to me “You speak up for Emma, why not for yourself?”

That was a turning point for me.

I have gained the ability to maintain boundaries when needed. Not only for my daughter but for myself as well. The strength I have gained within myself is something I had no idea I had within me. I have gained compassion and empathy for others. We never know what someone is going through. Emma is a true gift.

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