As I sit in the garden, the warm sun beaming down on my face. I listen to the birdsongs as they speak to one another; the wind in the trees and the distant sound of cars as the world around me begins to awaken. It is the calm before our latest storm.

I can hear my husband playing rough and tumble with our children, him pretending to eat them like a monster and their giggles as he tickles their stomachs. I wonder – when will he be able to do this with Alfie again?

Reality sinks in once more.

Things will change again and be difficult again as we navigate this next hurdle. The trauma of our family being apart for the next five days. The worry as Alfie goes for his surgery. Every surgery has risks, but with a global pandemic, this surgery scares me more than any of his others. And then the healing period, where the wound is not left to mend with stitches and bandages. There is a tube direct to my child’s stomach that we will start using immediately.

What if the surgery does not work? What if it hurts him? What if I do it wrong? What if he pulls it out? So many what ifs and so much fear.

It is hard to feel positive and look towards the future at a time like this, at a time where my baby goes through yet another surgery. Another struggle he unfairly has to face at such a young age. The tender age of 3.

Many people get to old age without having to go through even a quarter of what he has, so why him? Why my innocent child? My perfect little boy with his bright blue eyes, beautiful blonde hair, and cheeky smile. His hands soft as a new-born and his toes still small and chunky. He is perfect despite all he has suffered and continues to go through, and he will continue to be perfect, but why should he have to go through this?

Despite waiting several months for this surgery, now the day is here, it is not something I want to face.

I want to stay in my little bubble with my family, yet I know that we cannot. Despite what feels safe right now, it is far from safe. As Alfie’s unsafe swallow cannot be seen without an x-ray, it is easy to pretend it does not exist. Yet the longer it is left, the more at risk he becomes. A hidden danger, waiting to strike.

Happy Father’s Day to the dads who drive from hospital to hospital, to the dads who research various medical terms, to the dads who do therapies every day.

To the dads who print social stories and timetables, to the dads who battle with the education system to ensure their child’s needs are met, to the dads who advocate for their child and to the dads who carry out medical care for their child.

To the dads who have slept in a hospital chair or spent sleepless nights watching over their child. To the dads who do tube feeding, to the dads who administer medication and to the dads who have trained in the medical procedures that their child requires.

Happy Father’s Day to the dads who have given up careers to be home with their child, to the dads who have sacrificed their own dreams to create dreams for their children.

To the dads who miss nights with friends or the sports match to be with their child. To the dads whose life has not quite turned out as planned, to the dads who always put their child’s needs before their own. To the dads who work every hour they can to provide for their families and to the dads who work several jobs to make sure their family have all they need.

Happy Father’s Day to the dads who read bedtime stories, to the dads who fix bikes & wheels, to the dads who adapt toys & games to fit their child’s needs. To the dads who make their child laugh, to the dads who comfort and dry up sad tears. To the dads who calm meltdowns and reassure worries. To the dads who take stresses away and to the dads who cheer their child on every step of the way.

Happy Father’s Day to the dads who have lost, to the dads who have felt pain, to the dads who never got to be. To the dads who won’t hear the words “daddy” and to the dads who have experienced heartache.

Happy Father’s Day to dads everywhere; to father figures and to anyone who fulfils the “daddy role”. Know today you are important; you are appreciated, and you are very much loved.

Dear Daddy,

I’ve not met many other Daddy’s, I’m only four years old. But I reckon you must be the best daddy there is.

I know our first meeting didn’t quite go to plan, and although the first few weeks were very scary for me it helped having you there keeping me comfortable, giving me my milk and cuddling me.

Most of all, it helped knowing that you believed in me.

I was so glad when you learned how to suction my secretions, so that I was safe to come home with you. All I wanted was to be safe at home with you and mummy and my big brother.

And then you learned how to put my feeding tube in for me, so that I didn’t have to go hungry waiting for a strange nurse to do it for me.

I know you’ve always had to work hard to make sure that we all have everything we need, but I am so glad that you still have time to cuddle and play with me.

I love that you know what my favourite TV shows are, and I think you are really good at picking out new ones for me to try.

And I love playing with you and my brother’s, I’m not afraid of rough and tumble and I love that you always let me get involved too.

I love that you get my sense of humour.

Not many people would laugh when I pee on them, but you do. And then you laugh with me for laughing at you.

I love that you are always there in the middle of the night, if I wake up scared, or in pain, or stuck in a funny position, you always come and rescue me and make sure I’m ok.

I love that you still carry me up and down the stairs each day, even though I’m growing very big now, and I know that sometimes it hurts your back, but I feel so safe in your arms.

Sometimes people tell me that I’m a superhero, but I think the real superhero is you and I’d really love it if you would wear your pants on the outside of your clothes every now and then because that would make me laugh!

Not just a dad but a round the clock worker prepared to do anything to provide for his family, not just a dad but a cuddly bear ready to carry his cubs any time they need it, not just a dad but an adventurous story teller that has his children at the edge of their seats (or laughing their heads off!), not just a dad but a superhero in disguise.

It’s often the mums that get the recognition when it comes to taking care of children, it’s the way it always was! The man would go out and work the woman would stay at home and take care of everything else. Of course, that was a long time ago and things have changed so much! But the dads often still go unnoticed.

But you know what I’ve noticed? That they don’t mind!

Not only does my husband get stuck in and do SO much for our children but when it’s me that gets the praise for how well they are doing, he allows it. He’s always in the background making sure everyone’s ok and he’s honestly the glue that holds us all together.

He has a way of making us all feel safe and secure and is that reassuring voice telling us all that no matter what happens, everything will work out!

So, on Father’s Day, the one day of the year that it will all be about the dads, I’m going to give him the recognition he deserves and our children no doubt will shower him in hugs!

Because a good dad will always put his family before anything else and I’m so grateful that my children will grow up with such an amazing role model.

So, I write this hoping my husband will see and realise that although I often forget to give him the reassurance that he’s doing a great job like he gives me on a daily basis, I hope he knows already. You just have to spend one day with our children to know they have an amazing mentor in their dad guiding them on the right paths while putting that determination into them telling them they can achieve anything they want to!

To the rest of the word you are a dad but to us, you are the world.

 

Dads of children with special needs; I’ve met loads of them in the work that I do, nowhere near as many as the Mums that I’ve met, but whenever I’ve met special needs Dads, whether in a group or on their own, if I talk with them for long enough at least one of these three themes will emerge. Themes that fill them with sadness, regret, pain, grief. Themes that special needs Dad’s don’t have to journey with, but most do… sometimes all of them.

So, what are these themes, and how can we as special needs Dad’s face up to them and overcome them?

You Don’t “Have to Be The Strong One”

This one comes up time, after time, after time. Dads who identify their role in the family as being the strong one, the one who tries to hold it all together. It’s a very manly ‘blokeish’ approach to take, convincing ourselves that we’ve got it all together. By inference, that makes the Mum the ‘weak one’, the one who is falling apart, the one who struggles most.

My experience of meeting loads of Mums and Dads is that this couldn’t be further from the truth. Scratch beneath the tough exterior of Dads, get them to start opening up about how they feel (yes, guys can talk about their feelings!) , even get them sharing in a group of other Dad’s about their child, their worries, the things they find hard, and they are as vulnerable and hurting as anyone else. It doesn’t take long for the tough shell to crack and to find that tough guys do cry… “Niagara Falls” as the taxi driver in the film ‘Scrooged’ puts it.

And let’s put an end to the lie that is that it’s the Mums who are weak, struggling, falling apart. In my experience I have never encountered more strong minded, determined and focused people than special needs Mums. Of course they have tough times too, it goes with the territory, but they generally seem better at dealing with the challenges they face, are better at sharing how they feel and talking about it.

Dads need to learn from Mums to be more willing to share how they are feeling, to be vulnerable, to seek out and find other Dads who are on a similar journey. It’s becoming a cliché, but there is still great truth in the saying that “It’s OK to not be OK”. There is strength in seeking help and support, talking is powerful and it doesn’t just help us, it helps those who we are talking with too. We’re all in this together (to use another cliché!) and there is strength in numbers (OK, I’ll stop the cliché’s now!)

There is support out there for Dads, places to engage as much or as little as you like. I’ve previously written and recorded resources for Dad.info (https://www2.dad.info) and I know they are great at providing a wealth of information, resources and support for Dads to tap into. Some friends of mine run Dads Take 5, part of Take 5 And Chat (www.take5andchat.org.uk). I’ll mention other organisations and groups that are useful to be in touch with later.

You’re Not in Control, You Can’t Fix This

Next up on the list of issues that I see all the time with special needs Dad is a sense of losing control, of not being able to fix this. Maybe picking up on the theme from the first section about “being the strong one”, Dads often respond to their child being diagnosed with a special need or disability by looking for ways to stay in control, to manage this, to fix this.

We look for an answer that is going to make it all go away and get life back to how it was before, but this can’t happen. Often without realising it, Dads are stuck in the ‘cycle of grief’ that can be just as real for a parent of a child diagnosed with a special need or disability as it can be for a bereaved parent. We grieve for what is lost, both the life we dreamed of for our child, and perhaps even the life we dreamed of for ourselves. I had wholly unrealistic dreams for James when he was born; dreams of him opening the batting for England at Lord’s in an Ashes Test Match. Dreams of him becoming a scientist and discovering a cure for one of the world’s worst diseases (how poignant that dream seems right now). Those dreams all changed forever when we received James’ diagnosis, and for a while I grieved those lost dreams before I discovered new ones.

The cycle of grief includes denial, a place a lot of Dads find themselves in. Then anger, that can be toxic and lead to broader relationship issues (see below), bargaining then follows which is again where many special needs Dads end up, looking for ways to negotiate a way out of this. Those with a faith might plead with God, “if only you’ll fix this, I’ll be a good person, I’ll go to church…”. Depression can follow, when the realisation hits that there isn’t a way to do a deal on this, we can’t fix it (it may not even be broken if we look hard enough). Finally, acceptance, a point on the journey that isn’t reached by everyone, but a place where some sense of understanding and appreciation of ours and our child’s new life is emerging; and it’s not all dark, there is much to look forward to (see ‘Welcome to Holland’ at the end of this blog post).

Realising that we’re on a roller-coaster, that there will be good days and bad days, days full of joy and fun and days that are terrifying, is all part of acceptance. And the more we journey with others, the more we are willing to share, the more we can help others and be helped ourselves.

More groups or organisations out there that can be good to tap into include the Additional Needs Alliance, which has a Facebook group with 2,500 parents, children’s/youth workers, practitioners and more www.facebook.com/groups/additionalneedsalliance/ There is also a website packed with resources and information that you can link to from the Facebook group. Another great group to check out is ‘Who Let The Dads Out’, who provide loads of national and local support and help for Dads www.careforthefamily.org.uk/faith-in-the-family/wltdo  Another helpful resource for Dads from Care for the Family is ‘Daddy Cool!’ https://www.careforthefamily.org.uk/faith-in-the-family/wltdo/daddy-cool-parenting-course

You Need to Stay

The final message for Dads here is linked to something that breaks my heart. In so many cases, too many cases, Dads leave. Maybe they have struggled to cope with “being the strong one” when inside they are broken. Maybe they have been overwhelmed journeying through the cycle of grief, and have got stuck at anger, lashing out at those nearest to them, or depression, unable to cope with their own emotions let alone be there for anyone else. Maybe they have struggled with their child taking up all of the attention of their partner, leaving little left for them. Maybe this has led them down paths to seek comfort elsewhere. Maybe it’s something else that has meant that this family has, literally, reached breaking point.

Sadly, over half of families with a disabled child experience significant relationship difficulties and breakups, and although there are some amazing single Dads out there who continue to parent their child, in the vast majority of cases Mum is left with the huge responsibility of parenting a child with special needs alone. I’ve met many, many single Mums of children with special needs and they are among the finest, most caring, most hardworking, most focussed people that I’ve encountered. I’ve learned a lot from them.

Not every relationship is fixable, sometimes the arrival of a diagnosis for a child is merely the final bit of pressure that opens up the cracks that have been there all along. But it doesn’t always have to end this way. If Dads are willing to understand their feelings better, to appreciate what is going on, to talk about them and seek support and help, and Mums too, then some of these relationships can be (and are) turned around.

Seek help before it’s too late. Your children need their Dad, especially boys who all the evidence shows benefit from a good, positive, male role model. Your partner needs someone who is going to share the load, be there for the family, work on raising your child together; someone to build a good life together with.

I’ve provided links to other Care for the Family resources, but there is one more I’d like to share; they provide family support around marriage and relationships, as well as for parents of children with special/additional needs. You can get to all of this here: www.careforthefamily.org.uk

It’s not weak to reach out for help, this really is “being the strong one”.

I hope these thoughts help Dads (and maybe some Mums too) to understand a bit of what might be going on in their lives, to realise that it’s normal for this to happen and that they are not alone, and how to find information, resources, help and support. Am I perfect at all of this? Of course not, none of us are, I’m as broken and struggling as the next man. I have bad days, I behave like an idiot, but by understanding why and by being willing to talk about it and do something about it I have learned that it doesn’t have to stay that way. I hope you can join me on that journey, thanks for taking the first step by reading this.

Peace,

Mark

p.s. I promised you that “Welcome to Holland” illustration… Here it is, I hope you find it helpful:

WELCOME TO HOLLAND
by Emily Perl Kingsley

Copyright © 1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”  “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.  The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.  But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

Image rights: Header Photo of James and Mark © Mark Arnold

So many children have been out of school this year for many months. As time goes on and family life changes unrecognisably from the start of the year so many parents are worried that their child or children are ‘falling behind’ in their education.

I get that. My son is due to start high school later this year and I absolutely feel the heartache that he had no end of term events to mark leaving such as a leavers assembly, parties, trips out and saying goodbye. He had no closure and didn’t get to meet the targets that were set for him just weeks before school suddenly closed.

His sister was the same too. An entire term lost, never to be repeated.

Home education hasn’t gone well despite my good intentions. My children are autistic and very ‘black and white’ thinkers so home is where they relax, unwind, play and watch YouTube. School is where formal learning takes place and the two rarely mix. With no peer motivation, no handing jotters to be marked, no face to face interaction with a teacher and no structure, even doing the set activities school sent has caused huge anxiety and tears.

I know so many families are also struggling too.

So, can I share with you a secret that has helped me so much? Your child isn’t losing out in education by being at home.

Does that help ease your guilt?

It should do.

Yes, your child may be missing out on formal curriculum but there is so much more to education than a nation programme of study.

There is so much you ARE educating your child on even if you don’t realise it.

Here’s just a few:

You are teaching your child resilience. While they may learn this consequentially in school what you are doing at home is showing them directly how to cope in a crisis by providing a safe, nurturing, loving environment to shelter and grow. When they face a crisis as an adult (which they inevitably will) they will look back on this season and have strategies to see them through tough times thanks to you.

You are teaching them that when the world is upside down, they can rely on the stability of family. That is something school can’t teach.

You are teaching them forgiveness, tolerance and patience by living as a family in close confinement for a period. This will help them through work situations they face throughout their life.

You are teaching them the importance of staying safe. The world is sadly a dangerous place at times and this period at home will help them see how vital being safe is.

You are modelling obedience and adaptability. In doing so you are teaching your child about following orders, the importance of submitting to authority and trusting others to know what’s best even when you are afraid and don’t understand.

You are teaching them love. Love within a family unit, love for your community and love for your country. By sacrificing for others, you are showing and teaching your child that life is about much more than their own wants and needs and that others matter greatly.

Mathematics can be caught up on, literacy can be taught by great teachers but what your child is learning through an unprecedented time at home in your care is something they will treasure for life.

Your child isn’t losing out on education being home, they are gaining skills for life from a teacher who is the most incredible person ever to them.

A year has just passed since I sat in a hospital cubicle as a doctor came in to confirm my worst fears. Our latest battle we were faced with was a diagnosis of infantile spasms. A battle that back then, I couldn’t have predicted the ferocity of. A battle that would be so resistant to the treatment that works so well for the majority of those affected, Jaxon would later be dealing with over 200 seizures a day.

He never does things the easy way.

Initially I’d hoped the treatment offered would completely eliminate all signs of epilepsy and we could go back to how things were. The small steps in the right direction, the progress forward, the tiny glimmers of hope as we watched and wondered how Jaxon would develop after a devastating brain injury at birth left the doctors telling us that he would be so severely affected his life would be full of uncertainty, could return. At first it did. But it was only a few weeks before, shortly after Jaxon’s gastrostomy surgery, I sat in a hospital cubicle crying once again because I knew what I was seeing. I didn’t need an EEG to confirm what I already knew.

Still, I begged for a repeat EEG to be carried out. A neurologist came to speak with us. I told him simply that I believed Jaxon’s seizures were back with a vengeance. An EEG was requested and just days later my fears were confirmed. His medication was increased and once again, all we could do was wait and see. The story of my life.

The improvements were barely noticeable. So once again the medication was nudged up to the highest dose. Still no change. Each time I’d hope for a miracle, each time I was left entirely frustrated and disappointed. There was little I could do but try to remain hopeful.

Then less than two weeks after our discharge from a 13-week hospital admission epilepsy struck again. In the form of a tonic clonic seizure. I struggled to keep my composure as Jaxon’s body shook at 2am. My fingers barely able to unlock my phone to dial for an ambulance. My voice was noticeably shaky as I tried to explain to the operator what I could see happening whilst also trying to cram in a condensed version of Jaxon’s back story. The ambulance came, rescue medication was given, and we were taken to hospital. I showed the doctors the videos, but they couldn’t be sure if it was a seizure or dystonia. They said if it was a seizure it was likely focal rather than a tonic clinic.

Slight relief.

We were sent home with a new medication to start. I was terrified and hoped I’d never have to deal with anything like that again.

But I did. Less than three months later the same thing happened. It was just me and Jaxon. Trying to keep my hand steady enough to dial 999, I put the operator on loudspeaker as I told them that my son was having a seizure. I knew this time what I was seeing. This wasn’t dystonia. He was seizing. His eyes were deviating upwards, his lips were twitching, he wasn’t responsive. I managed to capture some of the episode on video.

I was crying as I opened the door to the paramedics. They rushed in and gave rectal diazepam. He became quite tonic but seemed to come out of the seizure. Then he started again. We were taken to resus at hospital where they tried to stabilise him. Nothing was working. He’d been given two lots of diazepam and paraldehyde. The doctors told me he was still seizing and given how unstable his veins are due to how much they’ve been used, they needed to gain IO access. Intraosseous is where they gain access to give medication directly into the bone by drilling. I’ve seen some horrendous things happen to Jaxon in his short life, things I wouldn’t wish on my worst enemy but watching a doctor drill into my one-year olds knee is right up there.

I cried as they did it and I cry as I think about it now. As they gained the access, I pushed my way through the team of doctors, I could see he was no longer in a seizure. He was tonic yes, but that’s not all too uncommon for Jaxon, especially when he’s in pain. I begged them to listen to me as through the tears I tried to explain that Jaxon was no longer seizing. One of the nurses quietened the rest of the team as I explained he has increased tone, and this was normal. The room suddenly seemed calmer and there were discussions of us being moved to a ward.

A few days later we were sent home with a plan for rescue medication if it ever happened again. Another repeat EEG was also ordered to try and determine what was going on.

Just a couple of weeks later the EEG was carried out. I recognised the person doing it from our first EEG. She told me the first time around she couldn’t tell me anything about what she was seeing, and I didn’t question her. This time around I asked her if she could at least confirm if hypsarrhythmia (the chaotic brainwave pattern associated with infantile spasms) was still present. I told her I’d pretty much ate, slept and breathed IS for the previous six months and that was all I wanted to know. Maybe she sensed the desperation in my voice or maybe she felt sorry for me, I don’t know. But within 30 seconds of the test beginning, she looked at me with real sorrow as she confirmed it was still there. I nodded, held back the tears as I gripped Jaxon so tightly, wishing somebody had the answers to help him.

In the new year we weaned off one medication that clearly wasn’t working and started a new one to try once again to bring his seizures under control. This too was unsuccessful. We were awaiting the go ahead to start the ketogenic diet, but Jaxon’s consultant felt it was best we wait until his reflux is fully controlled.

A few weeks ago, we started yet another new medication. His fourth seizure medication we would try. The improvements so far have been the best I’ve seen. I’m reluctant to become too hopeful as I’ve seen an initial improvement before with new medications followed by a swift punch to the gut as weeks later the seizures return with full force.

Epilepsy is heart-breaking.

It takes away so much, which is another difficult and devastating blow when you feel like you’ve already been robbed of so much. There’s nothing worse than watching your child have clusters of seizures day in, day out and feel utterly powerless to stop it.

I hope with every part of me that one day there will be a cure for all types of epilepsy, even the most intractable types. Until then, I’ll hold onto what little hope I have left that the next treatment we try will be the miracle we’ve been waiting so long for.

 

I dislike puberty.

It is changing our sweet girl’s body into a woman’s but her mind is still a young child.

It is preparing her for periods and adulthood when she still prefers to play with Peppa Pig.

I dislike puberty.

It is explaining becoming a woman means she can have children but not having the heart to explain that she never will.

It means she is growing up and her behaviour will be judged and less accepted.

I dislike puberty.

It is teaching her modesty when she has no concept of sexuality.

It is protecting her from predators and trying to keep her safe.

I dislike puberty.

It is wondering how WE go about shaving body hair.

It is preparing for the seemingly impossible process of applying braces.

I dislike puberty.

It is finding a bra she will have the motor skills to put on on her own.

It is getting her used to dealing with the feel of sanitary items when she cannot tolerate wearing a plaster.

I dislike puberty.

It may mean more drugs and wondering if she will use a sippy cup with formula forever.

It is preparing for possible increased seizures.

It is teaching independence but keeping her safe at the same time.

It is confronting and uncomfortable.

But like every other obstacle we have to overcome we will get through this too.

But I still dislike puberty.

Teletherapy sessions is more than a feasible solution for the near future – it’s a win-win!

These past couple of months have probably been the most stressful of our adult lives.  By now, the sting of this new reality is subtle, and you’ve probably gotten into a new rhythm, a new schedule and a new norm. There are endless stressors (financial, emotional, social…) that we can identify, however I’m going to present a different narrative.

These past couple of months of staying in place have awarded parents the opportunity to be present for their children in a way that would have otherwise been impossible.

I’ve worked with many families, to coach them in strategies/activities/schedules to help them push through each day with their children.

Those are the same parents who’ve I’ve coached for the past several years.  However, NOW they aren’t busy with work, travel, transport, entertaining, vacation and recreation… just to name a few.  Now it’s all about filling time at home, until the end of the day, repeat.

Thus, parents are searching for fun, therapeutic and educational ways to play with their children.  All studies indicate that the greatest progress is achieved when parent’s carryover, and expand on, the exercises and activities that are done during therapy sessions.

The best progress is achieved when parents understand the goal of an activity and why the therapist is suggesting a specific activity, in order for the parent to simulate the activity and imbed it into their child’s daily routine.  In technical terms, which some may appreciate, parents are executing trials of blocked practice.

‘Practice makes perfect is not just a cliché’.

Blocked practice is described as practicing the same skill over and over again, which uses the same neuromotor pathways, which makes the connections between brain and body faster and smoother. Blocked practice is a great way to teach a new skill or to improve the quality of movement during a familiar skill.

My job has not changed, the way that I execute it has. During teletherapy visits, I observe the child’s movements, I analyze what muscles are working, which ones are not, and I recommend an activity that incorporates motor, cognition and communication.

The goal-oriented tasks are always a game or a fun activity that promotes independence, a better quality of life, or to gain a functional skill.  Because the parents are executing this, the parent also becomes a participant in active learning, which both empowers them and is most beneficial for the child because most parents will revisit that task at a later date.  We have all gotten more creative in using household items to create interactive and fun therapy sessions.

So, while this period of time is full of unknowns, I know that this can be a time of learning and fun and even progress! We’re all in this together is not just a cliché’, its reality.

Parents and physiotherapist working together have always been integral for a child’s success, now more than ever.  To the parents out there, I recognize that this is far from easy, but I want to thank you for making a tremendous difference in your child’s life right now.  Regardless of what’s keeping you up at night, every parent’s dream of doing everything we can for our children, is still being fulfilled!

This period of togetherness has given many parents to participate in therapy sessions and actually implement the carryover that the children need to learn and progress.

Dr. Sharon Galitzer, PT, DScPT, MS, CIMI

Pediatric Physical Therapist