Permission for a Change of Pace

This week, I did something that felt a little crazy. I contacted nearly all the places where our children have weekly appointments/therapies and I asked to take three months off from attending. I had twinges of nervousness as I wondered if the providers would think I was being a neglectful parent. I worried that the intuition and thought that went into this decision would be doubted or scoffed at it. I felt concerned that they might tell us if we take time off, there would not be a spot for us when we are ready to return.

But you know what? None of those things happened. With each phone call and email, I explained that our family had been dealing with some challenging circumstances the last year and that we were in the middle of some big decisions and transitions. We needed time to be together and not run from place to place for a while.

Each provider responded with understanding and support. They agreed that breaks are wonderful and needed. They assured me that they have seen how dedicated we are at home to develop skills and provide a therapeutic environment. Then they simply told us to call back when we are ready to return and they would get us set up with appointments again, even if it must be at a new time than before. And that was that.

I had a new feeling of lightness and excitement.

The rest of the week, I had a new feeling of lightness and excitement as I looked at the days ahead of us. I am planning a summer full of being home as a family, spending long days outside, and taking a couple of the small vacations we have talked about for far too long. I truly don’t have any fear of my children regressing because I know first-hand how much progress we make in each hour that isn’t spent inside a clinic.

I am so thankful for our therapists, doctors, and other providers. I also trust my own intuition as a mother, and my training and experience; to parent my children with disabilities well. This will be the longest break we have taken from weekly appointments, but it won’t be forever. I fully believe that we will return to our regular schedule three months from now; renewed and more ready than ever to dive into a busier schedule, and lofty therapy goals.

Breaks are not only okay; they are absolutely needed!

As caregivers to children with disabilities; from day one we constantly hear the list of therapies, procedures, and interventions that our child “needs” in order to function their best. What we don’t hear as often is the need to sometimes step back, enter a change of scenery, pace, and know that this will not destroy all the work we have done or will do in the future. Not only will it not worsen progress, but I also truly believe it will give a needed reset and re-inspiration.

Take the break…

The excitement alone that I have felt since following through on this decision, has shown me that the right decision was made. I also know it could have happened much differently. I could have faced resistance, threats of losing services, or suspicion of making less-than-the-best decisions for my children. Even then, the validity of our needs and correctness of the decision made would not be false. Friend, you don’t need permission to prioritize rest, togetherness, fun, and refreshment. But just in case you are under the impression that you do, here is your permission: TAKE THE BREAK. You need it. Your child(ren) needs it. Your family needs it. And I know you will thank yourself later and those around you probably will too.

I’m sure we’re all familiar with squatting to build muscle in our legs and bums but have you ever thought about squatting in a more functional sense?

Outside of the gym, the squat posture isn’t a daily sighting in the UK or Ireland for the most part! After spending some time in Asia a few years ago it was so interesting to see how common this position was for everyone no matter their age. From relaxing, cooking, socialising and more, squatting was for a lot more than exercise – it was even used for going to the toilet.

The healthcare field is encouraging us to come full circle as squatting to go to the loo is considered the healthiest option for us all (visit National Institute for Clinical Excellence for guidelines).

After these observations I had to do some digging. Turns out that the toilet most Western societies are used to is actually a very modern concept. A “throne like” toilet was initially adopted by royalty and as such, everyone wanted one! Then came the invention of the U-bend toilet. All of this led to sitting instead of squatting being considered the normal way to pee or poo. The healthcare field is encouraging us to come full circle as squatting to go to the loo is considered the healthiest option for us all (visit National Institute for Clinical Excellence for guidelines).

These findings around toileting and squatting were on the backburner until we got the chance to develop a new supportive toilet seat for little ones. I got to put my knowledge to use and kickstart the research into this new product. Some technical bits coming up!

We all have a muscle call the puborectalis, which is a part of our pelvic floor, it wraps around the rectum to keep us continent. It works a bit like a rubber band pulling on the anal canal, creating an angle in the rectum. This muscle is why we can sometimes strain when we’re on the toilet – unless we squat. When we squat the puborectalis relaxes and the angle is gone from the rectum which means gravity can do a lot of the work for us. Isn’t that cool?

Squat based exercises can reduce instances of incontinence in children according to a new study by Garcia-Fernandez and Emanuel Petros (2020).

I found some research to back me up on how great squatting is! Studies have found that people who squat to go report that they strain less and don’t take as long to go (Sikirov, 2003) and that lower abdominal pressure that happens when we squat also means less effort is required (Tashiro et al, 2020).

Children with additional needs can experience chronic constipation and can require regular use of laxatives to combat this. Trunk control can be poor or slower to develop in children with additional needs, this can influence pelvic control, which can lead to incontinence and habits that can be tricky to break. These factors, plus unclear continence advice or healthcare support, add up to low or non-existent expectations from families on developing toilet skills.

We want to change those expectations!

As you have guessed, we’re fans of the squat posture. It assists in our natural physiological functions with added bonuses of stretching out tight muscles and reducing strain on the toilet. These factors can result in victories when developing toileting skills and this in turn can have positive knock on effects on quality of life and the ability to participate for children and their families. It sounds pretty good, right? There is a product out there to support all of the above for children with additional needs, encouraging progress and positive expectations for the future.

Purchase GottaGo here – GottaGo (fireflyfriends.com)

Read our ‘Toilet Training, Give it a Try!’ blog post – Firefly GottaGo – Toilet Training, Give it a Try! – Firefly Blog (fireflyfriends.com)

References

• https://www.nice.org.uk/guidance/cg49/chapter/1-Guidance
• Sikirov, D. Comparison of Straining During Defecation in Three Positions: Results and Implications for Human Health. Dig Dis Sci48, 1201–1205 (2003). https://doi.org/10.1023/A:1024180319005
• Tashiro, Daisuke & Nakahara, Masami & Kitajima, Eiji & Haraguchi, Kenzo. (2020). The effects of a defecation posture, supported by the upper limbs, on respiratory function. Journal of Physical Therapy Science. 32. 332-336. 10.1589/jpts.32.332.
• Garcia-Fernandez, A. and Emanuel Petros, P. 2020. A four-month squatting-based pelvic exercise regime cures day/night enuresis and bowel dysfunction in children aged 7–11 years. Central European Journal of Urology, 73(3), pp. 307-314.
• Talu, B. 2018. Determine the Relationship Between Abdominal Muscle Strength, Trunk Control and Urinary Incontinence in Children with Diplegic Cerebral Palsy. Urology Journal, 15(4), pp. 180-185.

It feels silly to say that my family is within a tough season because I’m pretty sure I have said that my entire life, perhaps more so with each passing year. I don’t mean that in a pessimistic, “woe is me” way. I simply mean my family faces a seemingly abnormal amount of hardship from a whole lot of different directions. Many of our trials surround things that are somewhat “chronic” and likely won’t come to fully pass anytime soon. Overall, we are confident in our calling and purpose, even on the hardest days. But they are still just that—hard. Really hard.

How is this real life?

A few months ago, I remember turning to my husband in a bout of grief and saying: “It’s only March and I am not sure we can handle any more blows this year. How is this real life?” Well spoiler alert…more blows came. Lots of them. A couple weeks ago I decided that we, for real, could not handle any more heartache. We were looking ahead to a serious surgery for our son the next week, a surgery that caused me more worry than perhaps any of the other 22 surgeries we have faced with our children in the last five years. I truly had no idea how we would make it through this when we were already carrying so many burdens.

But you know what…? We are making it. Today marks well over a week since my son’s surgery. There have been many miracles and also some tears and very dark times tucked into the last several days. Yet somehow, we kept putting one foot in front of the other, even when we didn’t realize it. Things aren’t perfect. In reality, they are an absolute mess in many ways. But we are making our way through.

This begs the question…how?

How is it that time and time again, I look at the dark valley stretching on every side of me knowing there is no way out, and still take another step while catching glimpses of sun along the way? How do I so often end up past–or at least trudging through–that which I was sure I couldn’t face?

For me personally, my faith is always my number one strength, reason, and hope. I walk beside a good, kind God whose greater purpose and willingness to step into the muck beside me changes everything. Beyond that though—or more accurately, within that—there are so many things that aren’t obvious to me sometimes until I look back and see how they are the reasons I continue putting one foot in front of the other.

Within the hardship of my son’s most recent surgery, part of my “how” was a small message group I used to keep a handful of people informed before, during, and after my son’s surgery. I have never done this before, as past trauma of my own has created terror of being a burden to others, in addition to past experiences of deepest hurt when we shared information with people who don’t value our children as we do. But this time, I pushed myself to keep these few, kind, willing people informed and each message I sent felt as if I was literally sharing the burdens I was carrying. Their prayers, encouragement, and simple willingness to be informed meant so much to me. Through individuals in this group, my son had the opportunity to be surrounded and prayed for by a large group of faithful people a couple days before surgery. We carried their prayers and support with us to the hospital and beyond.

There are so many other things that come together to create the “how” behind my ability to be ok

My incredible therapist who has been an absolute God-send and rock for me. My precious friend and nanny to my children weathers many storms with our family, holds down the fort during hospital stays, and gives me mental health breaks whenever I need them. My remarkable husband is present and attentive to my fears, triggers, and need to vent. An organization in our city supports families of children with life-threatening conditions in the most incredible, tangible ways. A friend of mine drops by delicious freezer meals and treats.

Music.

Medications (no shame if you need a little extra help from science to be ok!).

Unexpected naps.

Late night tacos and ice cream.

Sunshine, fresh air, and open windows.

I could go on.

If I am honest, when my mind is in a weary and hurting place, it can be difficult for me to realize that I truly am weathering the storm instead of drowning in it. Many times, my “ok” doesn’t look how I want it to, especially when I am longing to be so much more than just ok. It can be hard to look for and acknowledge the progress and the reasons behind it. But once I find myself looking for the “hows” behind my ability to keep going, the list is endless and I can’t help but let my overwhelm with circumstances transform to overwhelm with thanks.

If you find yourself in a season where you are just ok or maybe a little less, it’s alright.

Life is hard, my friend.

You are here.

You are making it.

You are enough.

“I wonder if there will be lasting effects, will she resent me for taking her to so many of his therapy appointments through the early days of her life? When I look back at photos I see so many of them in doctor’s offices, was her childhood innocent enough?” Guilt plagues any mother and when you throw in the complexity of a special needs twin the guilt is doubled.

Quinn and Sawyer (5) had a complicated first few months of life. They both became extremely ill, fought for their lives and found themselves with lasting effects. Since Quinn was an infant she has been scared of the doctor. Her anxiety leading into unpredictable situations can be tough to manage. Quinn has not slept through the night in 3 years and we have tried everything to help her sleep. We have seen multiple therapists and specialists to help but have not had any luck.

For years she cried and screamed anytime she had to go to the doctor.

She would fight going to the doctor. I know many kids are like this and that isn’t what makes it so tough. What makes it tough is the anxiety that lingers after. After a visit with the doctor she will worry to the point of having nightmares. Thankfully she does not have to see the doctor often but when she does we have to explain over and over on the way to the doctor exactly what will happen. She has learned to advocate for herself at the doctor. Now she is beginning to have anxiety about her brother.

Unfortunately, she has seen many situations where Sawyer gets a blood draw or has to do something at the doctor he doesn’t like. She’s seen him get sick dozens of times and need a hospital visit. She has seen him have seizures and had to be handed off quickly to a neighbor with out a goodbye while we put Sawyer in the ambulance. This is a lot for a child to handle and it’s more than she should.

How can we possibly shelter them from the trauma that we endure as parents?

Quinn is now five and finally able to articulate how she is feeling and tell me about her dreams. A week ago she was sleeping in bed with me at my grandmas house and she woke me up saying “No! No! No!”. She explained to me the next morning that she had a dream she was having surgery. She has woke me up last night because she had a very scary dream but didn’t want to talk about it. How do we as parents help our children that are simply bystanders in a complicated life? How can we possibly shelter them from the trauma that we endure as parents? I don’t know the answers to these questions but I do know that we have tried accommodating her. We are very thorough in explanations when going somewhere unpredictable. We spend time discussing anything her brother is going through and we give her time individually to play without her brother and to just be a kid.

I guess the reason I have gone through all of this explanation is because its easy to forget the struggles of the healthy child. They often make sacrifices for their medically fragile sibling and many times their needs come second to that of their sibling. It’s a complicated relationship and one that often comes with a lot of emotions.

Allow me to say this first – this post will not be for everyone. Not every father is a good Dad. Maybe you are a Mum doing this parenthood thing on your own, you have my deepest unending respect because this gig is H.A.R.D.  Kudos to you ladies.

It is cliché, but anyone can be a father. It takes a real man to be a Dad. Whether they are the biological parents of their children or not, it doesn’t matter if they are married to their children’s mother, separated, live together or apart, a good Dad is worth their weight in gold. My brother is father to three beautiful children, one he shares with his wife, one he became father to when he first met her, and one he shares with his former partner. He is devoted to all three and adores them equally. My own Dad passed away 4 years ago and there is not a moment when I don’t miss him – not only was he a great Dad but he was an amazing and very proud Grandpa too. He never doubted Sam would be ok for one second. He wasn’t wrong either.

Sam’s Dad is very much Sam’s Hero.

In addition to the usual Dad-stuff of playing with LEGO, reading stories, generally being silly, he is Chief Nappy Changer, Chef, School transport escort, and therapist. He doesn’t just share the burden of special needs parenting; he takes the brunt of it. When we found our backs against the wall 5 years ago, it was Mr V who quit work to become a full-time carer for Sam. He takes our son to all his hospital appointments (I go when I can), he manages Sam’s medications, continence needs and meal times.

In many ways, we are a very modern family where the parents have experienced an almost complete role reversal. And he never complains. Not ever. He is the lynch pin that holds things together, and yet he doesn’t see what he does as anything special. To him, he just does what any Dad would do for the son he completely adores. Sam and I are very much aware of how lucky we are to have him.

Sometimes it’s hard to explain to friends and family how critical their choices are in keeping Sawyer safe. During the pandemic we were extremely careful with visitors finding out later they weren’t honest about risky behaviour. For Sawyer a cold is never just a cold. While I do know that he is going to get colds, he is going to get germs, especially in school we try to maintain certain behaviours to keep him safe. We hand wash a lot and carry hand sanitizer in all bags. During cold and flu season we ask that family get a flu shot before visiting, and wash hands and sanitize frequently.

We also limit our outings with friends during cold and flu season. We be very aware of sharing food and washing our hands. It’s not always easy to explain but it’s what we do to keep Sawyer safe.

Recently Quinn came home with a cold from a neighbour. We recently opened up our restrictions on Quinn playing with friends, she has to be a kid! The neighbour wasn’t showing many signs at all and she has had dozens of colds so her immune system is prepared to handle it. We did our best to keep Sawyer and Quinn separated but they are in the same house so there is only so much we can do.

After a week Sawyer began to get congested and by 48 hours in he was so congested he was requiring oxygen during the day. Sawyer does not need oxygen on a daily basis. We have it for seizures and colds for overnights. We don’t use it during the day and when we needed it; it was a sign we needed to go in. This ended up in a 3 day hospital stay, 3 blown IVs, 2 antibiotic shots in the thigh muscle, lots of neb treatments and sleepless nights.

A cold for Sawyer isn’t just a cold, he can turn quickly and get very ill.

Often times he begins vomiting so much that he gets dehydrated. This time he wasn’t vomiting but had oxygen needs. While I know he is going to continue to battle things things; I know we can’t wrap him in a bubble. However, we can continue to be as safe as possible. We can continue to say no to family visiting that isn’t vaccinated or has recently been on a plane.

For now we are continuing to think of things as a case by case basis. They have to be kids, they have to play with friends but we can keep our bubble small. It’s a tough journey and exhausting but its so worth it to keep Sawyer out of the hospital.

Developing toileting skills may seem intimidating at first, but the gains for both child and family can be truly transformative. Toilet training has a wide range of health and social benefits. Continence is linked to healthy development of the bladder and bowel and healthy development of the associated neurological systems. Furthermore, the increased independence in hygiene and personal care can positively impact a child’s confidence and self-esteem.

Full continence may not be the goal for every child but even the smallest amount of indenpendence can make the biggest difference. Studies have shown that by applying innovative techniques, children with bladder and bowel dysfunction or physical and neuro-disabilities (Millard, 2013) may have more potentialto develop toileting skills than we previously thought. And often combining these new approaches is the key to developing the skills needed.

Consistency is one aspect of toilet training that children with disabilities can miss out on. Lack of consistency makes the process lengtheir and more complex. Having a toilet seat or potty for use at home but not being able to bring it out with you on day trip or when visiting relatives can result in children having to revert to nappies when out and about, which is not ideal.

For many children with physical disabilities, being appropriating supported to void is a real issue. Researchhas shown that squatting is the ideal posture to reduce the strain required when voiding – for all of us! The squat posture also has the additional benefit of reducing dystanic movements as it closes the angles at hip, knee and ankle.

One aspect of toilet training you may be familiar with is waiting until your child gives you signals to indicate that they are ready to start. This is something we want to encourage you to rethink. Parents and caregivers can start toilet training early with simple early with simple everyday changes. For example, mimicking going to the toilet, using common toileting language, getting children familar and comfortable with the toilet and the bathroom, and ensuring that their child’s diet supports regular bladder and bowel movements. Small steps are the key to ensuring that the process is not overwhelming for anyone involved.

The GottaGo toilet seat is the latest product to join the Firefly Friends family. leightweight, fully foldable and with a stylish backpack, the GottaGo can be easily transported and used in any environment where your child may need a trip to the bathroom! The portability of the design provides the consistencyneeded for successful toilet training and the flexible seat supports the unique squat posture.

When you’r at the start of the toilet training journey it can seem like an insurmuntable task. However, with the right support and the right and the right equipment achieveing your goal is possible and the benefits to self-esteem, and bladder and bowel healthmake it worth it. More information on toilet training including case stories, and on the GottaGo can be found at www.fireflyfriends.com/gottago. Remember, every small step towardsindependence can make a big difference to your child.

Check out GottaGo here >> GottaGo (fireflyfriends.com)

Read Wilsons GottaGo Case Study here >> gottago_wilson_casestudy_1.pdf (fireflyfriends.com)

Who knew I’d choose to have a third baby? Who knew the pregnancy would be lovely and enjoyable? And who knew your birth would be complicated, require equipment that failed, and as a result you’d have HIE, a brain injury and, later on, cerebral palsy and epilepsy?

Who knew you’d have such delightfully, chubby cheeks and a glowing, wide smile?

Who knew your head would always hang to the right side because of torticollis?

Who knew you’d start therapy at a mere two weeks old? I didn’t know you’d have careful, skilled, gentle therapists right from the start. I didn’t know you’d be so cooperative. I didn’t know you would work so hard for me to see tiny steps of progress, things you didn’t, you couldn’t have noticed at all.

Who knew you’d smile every day, belly laugh, and play with other kids with reckless abandon? Who knew your sisters, especially the one closest in age, would love you so tremendously? We couldn’t know you two would become best friends. We couldn’t know you’d teach her, and her you, and that it would happen unconsciously and organically, without persuasion from parents.

Little did you know that doctors said you wouldn’t sit up, crawl, stand, move independently, be able to do 1/10^th of all you can do now. You don’t know how many hours I prayed for you to grow strong, or for the strength to help you.

You will never know how many tears of pain, joy, relief, and bitter-sweetness have been shed on your behalf.

Who knew you’d be nearly six when you learned to stand on your own?

Who knew you’d still be in therapy, cracking jokes and having a blast, or sometimes throwing toys and screaming ‘no’?

Who could have known how darn persistent you are (and how I used to call you stubborn, then switched to this more positive term)?

Who knows how long you’ll be in therapy, but I do know you’ll never stop challenging yourself.

Who would have known you’d give my life meaning, in every way and in every day?

Do you know how much I cherish you? Well, now you know.

There was a time not long ago when I could lift and manoeuvre Ethan around with no effort at all. I used to lift his wheelchair in and out of the boot and then transfer Ethan in and out of the car into his chair. I have been hoisting him at home for about 4 years now mainly to save my back and we have had our wheelchair accessible car for 2 years now as well. He got heavier and heavier especially over the past year!

Today is the 2nd time I’ve had to use a hoist whilst out at the hospital on my own. I usually just lift him for weighing or onto the bed for an examination, but I can’t even do that now. Now I have to be that annoying person asking for hoist to be brought to us just so he can be weighed!

At the moment I’m having to do it alone.

Very few places we go are fully accessible. This includes some of the hospitals we visit. Only one of the four that we visit actually has suitable changing facilities at the moment. This is going to make it harder for me to go to hospitals alone, which at the moment I’m having to do it all alone. I’ve always done the majority of hospital appointments alone due to Ethan’s dad and step dad working. I like to be independent and its becoming very clear that as Ethan gets older that this independence will disappear.

This is the reality!

I should be able to take my son out on my own and not worry about having to leave after a couple of hours when his pad changes. I shouldn’t have to rely on others to help me lift him to meet his basic needs. He shouldn’t have to stay in his chair for a whole day without a stretch because there’s nothing to help him out of his chair. But this is the reality for us and families like us as our children get older.

It shouldn’t be something we just have to accept, like everything else that comes with having a disabled child, especially in hospitals who treat our disabled children.