Beginning Short Breaks & Respite Care

Our youngest daughter Brielle first got introduced to a local respite facility for children and young people with disabilities over a year ago.

It started off very slowly, a short visit with me to say ‘hello’ and then we’d leave her there a few hours at a time once a month after that.

Then we progressed being picked up from school by the centre and I’d pick her up before bedtime, around 4 hours in total.

I remember her key worker (social worker) coming for an initial assessment and filling out reams of paperwork. Must have been about 2 hours we chatted in our living room for. Of course, at more than one point I got emotional about how great a girl Brielle is, what a blessing she is to us despite being such a handful… I also got a bit terry at the idea of letting her go into someone else’s care, outside of our home.

Brielle has two carers who regularly come in a couple hours at a time to watch her, sometimes take her on a long walk to the park.

But a short break, a respite centre is OUTSIDE of our family environment, outside of our care.

One of my daughters who is particularly maternal and protective was very adamant at first that she definitely did not want Brielle going there, that there was no way she would like it or be happy away from us.

It is most certainly hard to let go of some degree of control, of the protective instinct to care for and protect her at all costs.

Well, let me tell you, Brielle has now had 2 overnights there and she did AMAZING! She absolutely loves “W.H.”, and will sign the letters over and over again!

It was not easy saying goodbye her first night. At nine years old, it was her first night (not counting some early long stay hospital admissions) away from us all.

But I think is really great for her developing a sense of independence, as well as adventure and adaptability.

And it has been great for the bigger three sisters, to have a hands-free “fun” mum- you know, one who can take a leisurely walk down to the beach at sunset and run into the water to swim for a change with them… because I didn’t have to stay on the shore and watch them with Brielle.

So for Brielle and our family, overnight respite has been really positive.

She’ll be offered 2 nights a month from now on, and as long as she’s happy and loving it, all of us are happy. Thankful to our Trust for the service & care for kiddos like her.


There’s an “average” four-year-old boy in there.

Today in the car Sawyer “sang” along to all the frozen songs. He had the inflection and timing and tone just right. He sang right along with me, but they weren’t words.

Sawyer’s cerebral palsy seems to have affected his verbal language, but it hasn’t stopped him from acting like the typical four-year-old boy. He is VERY good at nonverbal communication. He answers questions with a smile or a frown and gets so excited to hear and see certain people.

He loves farts and potty language. He loves when we burp or accuse him of farting. He is a typical boy inside; he just looks different on the outside. He has a feeding tube, does not walk and is nonverbal.

For us, we know who he is and what makes him laugh but for others, especially kids, they struggle to look deeper. We usually get a lot of questions about Sawyer. What is the feeding tube for? Why can’t he walk?

We always do our best to not be offended and answer the questions because often they are coming from children.

There are more times than I can count that when I say Sawyer has Cerebral Palsy people respond with “I’m sorry.” It’s a natural thing to say when you don’t know what to say but it is also strange.

For one, it is not the situation we envisioned but it is not something to be sorry for. We feel as though we were chosen for this particular situation. Secondly, we get to see tiny miracles on a regular basis, so we feel so incredibly blessed.

Sawyer does not walk or communicate like a typical four-year-old but on the inside, he is ALL four-year-old boy.

Children like Sawyer force us to look deeper. It’s easy to make a snap judgment but it’s harder to step back and look on the inside. So next time you see a child in a wheelchair, someone with a disability or someone who may be different, model acceptance and understanding. Give them a smile, say hello and let that person know you care.

Frustrated? Opt in to something that brings you joy!

Raising a child with special needs comes with its own challenges and demands.

Every parent worries about their child and their well-being, but parents who have children with special needs get a little more of that, on a daily basis, especially during this time period.

It’s ok to feel that way, and it’s also ok to say it.  However, parenting a child with special needs almost morphs you into superwoman/superman.  You always muster enough power to charge forward and save the day, without stopping to think or feel.   You just get it done!

If you’re feeling overwhelmed and melancholy, you’re not alone.

We all must create some light in our lives during this dark time. If you have someone to share with, someone to give you a break, or someone that can support you emotionally, that’s great.  Meaningful interaction with other adults is vital during times like these.  Many of us are taking care of everything, all the time. I’m here to tell you that only you can make a change.  Just make one small change, during the day, each day, which is just for you.  On your ‘to do’ list, please add the following for yourself:

1. Identify a relaxation technique that you enjoy (mediation, contract-relax your muscles and start from your toes and work your way up, deep breathing, yoga, reading or gardening….). There are many free opportunities online.

2. Write a letter to your child about how they are special to you.

3. Get outside-Nature is cheaper than therapy.

4. Exercise- whether exercising means doing an online yoga class, a quick HIIT workout, or go for a quick 10-minute walk or run.

5. Touch base with an old friend or family member.

6. Make a list of the 5 positive changes you’ve seen in your children since the pandemic started.

7. Is there a project that you simply always wanted to do, but you haven’t?  Start it and dedicate a little time to this project every day.

8. Read a blog/write a blog- There are many communities out there. Find a group that you can identify with, a group that makes you laugh or cry, or where you can simply share.

There are so many things that we MUST DO each day.  Choose one or two things that you WANT to do today.  This is our new norm and we all have to create a “happy place” that serves as our respite.

I won’t preach to you about how you deserve this time, I’m urging you to keep yourself whole, the best way you can. I hope this blog planted the seed for a couple of changes that you can implement right now.  Only you can make it happen!

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

Pediatric physiotherapist

Lessons Learned from Lockdown

When the world suddenly went a bit mad back in early March and we were all confined to our homes, the future looked bleak and scary.

As we gradually move towards a ‘new normal’ and restrictions ease, I’ve been contemplating the lessons learnt and how simple changes could have a long-lasting positive impact on families like ours- those living with profoundly disabled and medically complex family members.

Greater flexibility around appointments

Previously, hospital appointments for Hugh have taken at least half a day.  He either misses a morning or an afternoon of school, and often it involves me arranging someone else to pick up or drop off my other son.  I have to drive into the city centre, find an accessible parking spot reasonably close to the hospital and hope that someone doesn’t ignore the massive ‘please leave space for a wheelchair’ sign and park directly behind me.

Frequently though, on return to the car, I’m forced to leave Hugh on the pavement while I manoeuvre out of a parking space and then load his wheelchair into the van in the middle of the road!

The hospital causes Hugh immense stress and even with ear defenders and toys that help calm him, he ends up anxious and upset fairly quickly. Sometimes, kind nurses take pity on us and move us to a side room or a quiet corridor, other times I’m left hot and bothered trying to distract him and keep him calm.

If the appointment is running to time this might *only* be for 20 minutes, but there are other departments where we’ve waited hours and I’ve ended up leaving to walk around the block and asked to be telephoned when our turn is near.  I refuse all but the absolutely necessary examinations now – too many medical interventions over the years have traumatised Hugh to the extent that he mistrusts medical professionals.

Since the start of the pandemic though, Hugh has had many appointments carried out over the phone or via video call.  This takes much less time and is far less stressful for both Hugh and I.  Of course, some appointments can’t possibly be carried out this way – he’ll need a spinal x-ray soon and will definitely need to go to hospital for that.  Yet, for the relatively routine appointments, surely video calls or telephone calls would save a lot of time, money (parking and fuel costs) and frustration.

Flexible education placements

Hugh has thrived in lockdown.  He has been much healthier, has slept better and his seizure frequency has decreased significantly.  From speaking to other families, I know that we are not alone in this.  Partly, I assume, it is due to the dramatic reduction in bugs and germs he is coming into contact with.

However, I think it is also due to the fact that he is getting enough sleep.  Hugh’s sleep pattern has always been erratic and after being awake during the night, he is often ready to go back to sleep just as it is time to get up for school.  This means, while Hugh falls asleep, we are giving him medications, dressing him, loading him into a wheelchair and putting him on to the bus for school.  Often, he’ll wake to find himself in a standing frame or on the floor of the classroom about to start physiotherapy.

During lockdown, he has chosen to go back to sleep – he’ll shout at me if I try to get him up earlier than he is ready – and in turn I have been able to allow him that time.  When he wakes later, he is happier, more engaged and more ready to learn.

For children like Hugh, it is not simply a matter of going to bed earlier to ensure he gets enough sleep.  Even with medication, his sleep is unpredictable.  The knock-on effect of being chronically tired is an increased susceptibility to illness and an increase in seizures.  Hugh’s school attendance is shocking as a result.  He rarely manages two full weeks at school without getting a cough or a cold and is often ‘seizurey’ or out of sorts or just plain exhausted.

There is an expectation for all children to attend school 5 full days a week.  Perhaps a more flexible approach would work better for some children, with shorter days or less days a week.  Hugh benefits greatly from going to school and home-schooling isn’t what I want for him long term, but perhaps thinking creatively about the hours he does would ensure he gets more from the time he is there.

Looking out for others

When lockdown began, there was a definite feeling of ‘we’re all in this together’ and I think, for the most part, people looked out for each other.  Those who could get out to shops, were acutely aware of those who couldn’t – the over 70’s and those shielding.  People reached out and offered help to those who needed it.  Facebook support groups sprang up, with communities coming together to help vulnerable people in their area.  For all the fear and worry around the pandemic, it was comforting and reassuring to see how people could pull together and support each other.

The outpouring of love for the NHS staff, the appreciation for the delivery drivers, the shop workers and the bin collectors – a realisation that these are the people we need to keep our country running.

Wouldn’t it be great to see that continue – that support for our fellow neighbours, that appreciation for the people who continued to work each day when much of the country stayed at home?  It shouldn’t take a pandemic for us to appreciate others, it shouldn’t take a country in lockdown for us to realise that our friends and neighbours need our help.

For some people the end of lockdown doesn’t stop the isolation and fear. They still need your love and support.  Give them a call occasionally, ask if they need anything from the shops, check that they’re not feeling lonely.

These relatively simple and easy to implement changes could really help support families who juggle the challenges of complex medical needs.  So now, as restrictions begin to ease, instead of going back to the way things were, wouldn’t it be great to move forward and use what we have learnt in these unusual times.

The Grief and Chaos of HIE

If there was a way you could take a picture of the mind of a parent whose child has suffered a hypoxic ischemic brain injury, I imagine it would be quite a remarkably fascinating image.

There would be so much colour that represents hope in amongst so much darkness that represents the truly heartbreaking realities HIE parents have to deal with. It would be a picture of what I can only describe as beautiful chaos.

There are a million ways I could describe my life since becoming a parent and consequently being thrown into the devastating world of caring for a child with a severe brain injury. Beautifully chaotic sums it up nicely, for the purpose of this blog at least.

It’s beautiful because I am Mummy the most amazing little human who has defied so many odds during his short but incredibly tough life. It’s beautiful because I could’ve lost my child before I even had the chance to get to know him yet he’s still here and I know I’m one of the lucky ones. It’s beautiful because I’ve learnt the real meaning of hope. It’s beautiful because I don’t miss a thing, every single tiny thing my child achieves is a total celebration.

It’s chaotic because I am Mummy to a child with significantly complex medical needs. It’s chaotic because whilst my child needs everything that his peers need, he also needs so much more. It’s chaotic because my child will never hit the big milestones and I have to deal with my overwhelming feelings of sadness of everything we have lost. It’s chaotic because my child will never be the little boy I imagined when I was carrying him and that in turn has resulted in me dealing with a very complex type of grief.

It’s somewhere between anticipatory grief and traumatic grief but with plenty of other different types of grief thrown in for good measure.

With a child who is so severely affected, there comes with it an extremely shortened life expectancy. For us initially, we were told around a year. Now at almost two years old it’s predicted that my child won’t live into adulthood.

With respiratory issues and Epilepsy, there’s a risk that every single day could be his last. Each day feels like another day where I’m walking on eggshells, not sure where I’ll find myself at the end of the day. No parent should have to bury their child and not many parents live their lives expecting that one day this may be their reality. But for me it is.

I feel like I’m currently in a cycle of grief that is so complex it’s almost impossible to articulate it in a way that even the most intensely trained counsellor would be able to understand. Every single day I grieve though. I know that much. As such I spend quite a chunk of my life feeling somewhat anxious and unhappy.

A few weeks ago we had a ramp installed outside our flat. It’s been in the pipeline for a while and I didn’t think much of it. When the workmen came to start the groundwork I felt sad. It was an overwhelming sadness that I couldn’t have predicted. It crippled me for days and I sat alone at home, crying.

I felt like I’d been smashed in the face with a very real picture of how life will look and since then, I’ve struggled to move forward. It took me a while to realise that those feelings I was experiencing, they were feelings of intense grief. Grief for the life we expected when I was pregnant. Grief for the life my child should be experiencing. Grief for the child he should’ve been. Grief for the child he will never be.

This is a lifelong journey that we are on.

I know I’ll have so very many more moments of sadness, anger and grief. Alongside those moments though, there will be glimmers of hope, happiness and reasons to smile.

Hypoxic Ischemic Encephalopathy is something that you’ve probably never heard of unless it’s very sadly happened to somebody you know. It’s so scarcely known about considering the devastation and heartache it brings to families around the world.

There is a lot more known about the conditions that can arise as a result of HIE such as Cerebral Palsy, Epilepsy and Global Developmental Delay to name but a few. Yet HIE remains relatively unspoken about.

I’m a firm believer that knowledge is power, awareness is key and the more we talk and educate, a better place the world will be. I’ll never stop talking about HIE, the incredible highs, the devastating lows and everything in between. If talking about my experiences helps just one person feel a little less alone on their journey, then it’s all been worthwhile.

Why School is Too Risky for Us Right Now

The start of the new school year is creeping up on us, and this year, instead of buying supplies off of school lists, we’re making decisions that we never thought we’d have to make – whether or not to send our kids back into the classroom.

Some don’t even have that option, depending on where they live in the United States, as areas that have high numbers of COVID-19 cases are beginning the school year virtually.

For those of us who have the option of sending their kids back, it seems like there still are no good choices. When your child has a disability or is medically fragile, it feels like you’re choosing between their physical and mental health.

It also seems like whatever we do, someone is going to think we’re doing the wrong thing.

Our 9-year-old son has chronic lung disease, and simple colds have landed him in the pediatric intensive care unit for weeks. Even though his health is more stable now, there are too many unknowns about COVID-19 for me to feel comfortable sending him back to school just yet.

Despite his health history, this choice was in no way easy. I would love for my son (and all children) to go back to school, but the risk is just too high for us, and many others like him.

Some may feel that I’m making this decision out of fear, and they would be right. Fear of him getting this virus and his body not being able to handle it. Fear of him having to be put on a respirator again, or worse, an Extracorporeal membrane oxygenation (EMCO) machine. An ECMO machine, in case you have never heard of it, is a bypass machine that is a last-ditch effort to save someone’s life. He’s already been on one, and I don’t care to see him on one ever again. He also regresses every time he goes through a serious illness, and it can take weeks or months to gain back what has been lost.

If I’m totally honest, this decision is selfish on my part. I’m doing it to save my sanity.

Chronic lung disease and just the everyday life of parenting children with special needs comes with a lot of worry and anxiety. I don’t need to add any more to my list.

I’m also not convinced he will be kept safe enough. All the personal protection equipment and sanitary precautions the school has won’t keep other parents from bringing their sick children to school, and by the time it’s discovered that the kid is sick, they’ve already exposed everyone around them. And with exposure comes quarantine and school closures. Even if he was lucky enough to not be exposed, those types of disruptions would be detrimental.

I’m sure many others are grappling with the same choices.

As much as I want to go back to the way things were, this new abnormal is here to stay for some time. Until we know more about COVID-19, or there is a universally accepted treatment or prevention, I’ll put on my homeschool teacher hat, drink copious amounts of coffee to get me through the day as usual, and face this as we do will all the hard things that come our way- head-on!


My Sons Joy is Not Reduced by His Disabilities

As I look at my beautiful, perfect little human smiling happily while listening to the birds, enjoying how the grass feels on his bare feet, it is very clear that he is thoroughly enjoying life.

Yes, he has severe visual impairment, is tube fed and has a life-limiting level of epilepsy; but he also finds the same joys in life that I do. He makes the best of every moment.

It doesn’t happen so often these days, but when he was younger it wasn’t uncommon that we’d be out and about, and there would be sympathetic glances, comments of ‘it’s a shame isn’t it’, or ‘poor little lad’. Trust me, there has been more than enough grief in this household at how unfair life has been to my boy.

You know what though? He really doesn’t let his disabilities get in the way of him enjoying every single moment of this life. He is who he is, and his happiness and love of life brightens the lives of everyone who knows him.

My son has forced me to examine my own attitude to life and to what matters.

I’ve learnt from him that it doesn’t matter if I don’t finish something at the first attempt. Doing as much as I can in one go is enough, as long as I go back and finish it once I can. Its perfectly acceptable to have an off day, sometimes resting is the best thing to do, but that does not mean you can’t still be happy.

If you spend any length of time with my boy you WILL witness seizures, they are a fact of life. You will also see how once its over and he’s had a little time to recover, he’ll go straight back to being his usual happy, sunny natured little self.

Sam’s disabilities don’t detract from his enjoyment of life; and if anything they allow allow us to focus on the smaller, simpler things. Like listening to the birds, seeing seeds that we planted weeks ago grow and bloom into glorious flowers, or just going for a walk together.

Happiness doesn’t cost money, and it doesn’t need a huge gesture or experience to find – its always there, we just need to follow our beautiful children’s lead and recognise it in everything.

The One Question that Guides My Tough COVID Decisions

If you had told me a year ago that my two-year-old would have a Zoom meeting almost every day, I would have called you crazy.

But here we are in 2020, where just about nothing is too crazy anymore.

When my state began shutting down due to coronavirus, all of my son’s up to seven weekly therapy sessions switched from in-home to live video. There was certainly a learning curve, but we have all gotten used to the new normal of video chats with some of our therapist “friends” who used to come to our house.

Now that things are starting to open back up, our family, and perhaps yours too, is left with some decisions to make on whether to continue with video visits or allow some (or all) therapies back into our home (or heading back into an office, if that’s how your therapies are conducted).

For me, one simple question guides all of this decision making:

What provides the smallest risk with the potential for the greatest reward?

In our family, having all therapists back in our home is too big of a risk for the amount we believe our son would benefit from live visits again. He is receptive to video call and works well with us as the therapist guides our activities and approach.

This decision doesn’t have to be all or nothing, though. As we weighed each therapy along the same question, my husband and I decided that having physical therapy in-person could provide some significant benefits versus video visits, and we trust and know our therapist well enough to feel that the risk is minimal.

I can’t emphasize enough, though, that every situation is different for every single family. What works for my family will not work for yours, and what works for yours will not work for mine. We can’t compare or judge anyone’s decisions when we filter our decisions through my guiding question: What provides the smallest risk with the greatest reward?

These times are forcing us all into difficult and scary decisions. I’m here to tell you that you’re doing a great job.

Speaking of doing a great job, I can’t close out an article like this without sending a big thank you to all of the hard-working therapists out there. We are so very grateful for all of you, although we probably rarely show it as much as you deserve. You are more special to us than you will ever really know.


Never Limit Anyone, Whatever Their Struggles

2020 has been a year most want to forget but even more so for my family. Even before any virus was in the news my family faced difficulties. Back in January my elderly mum fell and broke her femur.

After an operation and a stay in hospital I went from full time caring for two disabled children and carer for my husband to also being full time carer for my mum.

At 75 her recovery has been long and painful and my children have had to adapt to granny not being able to do many of the things she did before, which hasn’t been easy for them as their own struggles and autism make adapting to change hard.

For my 11-year-old son it’s been especially hard. He is non verbal with significantly high care needs himself. Unable to read or write, severely autistic with learning disabilities, epileptic and with a large mass on his brain, coupled with vision impairment and a progressive genetic condition, he very much lives in the moment and, so everyone thought, is pretty much unable to imagine the difficulties of another person.

But one day he showed us all why we should never underestimate anyone, regardless how much they appear to struggle.

I had my mum with me as I was taking Isaac to the park. He ran ahead, as always, giggling and flapping with excitement. He didn’t look back once as he headed for the gate, pulled it open and headed for the familiar frames and slides. Seeing him ahead and knowing he was safe I supported my elderly mum so she could see her grandson playing.

Isaac did his familiar (and very rigid) routine, climbing up the smaller easier equipment and sliding down the slide built for children half his age. He then moved to another area, circling the equipment as he always does and flapping. Eager to enjoy her grandson at play my mum ventured down to where Isaac was.

But then Isaac decided his rituals were complete and he began to make his way back up and towards the gate as I watched from nearby. I was torn now between helping my elderly mum with mobility difficulties or chasing my vulnerable non verbal son who has no sense of danger. But just then my mum called to her grandson:

‘Isaac wait for gran! I need help. Gran has a sore leg.’

As I waited to stop my son escaping so I could help my mum I watched in astonishment as my son stopped, turned and paused. What happened next blew me away and has taught me a lesson I will never forget.

My son, the most unlikely helper, a child still fully dependent on help himself, unable to verbally communicate, not able to read or write at 11, processed the pain and need for help of another person and responded perfectly. He turned and headed right back to his own elderly gran, reached out and took her hand, and guided her safely back through the park.

As I ran down planning to step in and help and found I wasn’t needed so I just took my phone out and snapped this beautiful picture to always remind myself to never ever limit my child again.

Yes, my 11-year-old is autistic. Yes, he’s non verbal. He absolutely has significant and high care needs and always will. He’ll always need 24/7 care.

But that’s not all he is. He’s also a compassionate, loving, wonderful boy who can show the world that we should never limit anyone, regardless what difficulties or struggles they face in life.

Everyone has potential, even the ones who appear to struggle the most.