12 Weeks of Socialising via Technology

As we are all aware, some more than others, we are living through a huge pandemic. A very serious, life threatening virus has spread across many countries, and is becoming more of an issue over here in the UK.

This will be affecting every single person in a different way.

The NHS is under huge pressure with more and more patients becoming poorly.

The Government has the whole country listening to their every word as they lead the country through something none of us have experienced before.

Key workers are on the front line keeping the country going, whilst putting their lives at risk.

A huge thank you to every single one of the above for their time and efforts at this time!

For us as a family, living with a child who is classed as vulnerable with medical needs, it has forced us to isolate with extreme measures, to prevent our little boy from contracting the virus. Which is absolutely fine, as it’s necessary to do so, and will give Zachariah the best chance throughout this time. To some degree, we have had experience with self-isolation before, and keeping people away from the home if they feel unwell. Zachariah is under respiratory, and takes prophylactic antibiotics, he is prone to chest infections and classed as vulnerable. We limit activities during winter months and monitor his health daily. However, this form of isolation is a whole new level.

Although we are counting every single blessing at this time, we have a safe, accessible home and garden for Zachariah to continue to thrive, we have found challenges in form of communication.

For Zachariah, he needs the whole sensory experience to truly benefit from other people’s company. He needs you to touch his hands or face, hear and feel you there with him, and smell you. He bounces off the atmosphere of laugher, and conversation. He requires you to be present with him to be able to really engage with you.

With that in mind, facetiming his family and friends has been an extremely confusing time for him. Hearing their voices through an iPad has almost shocked him. He knows the voices but is left wondering where the interaction is, that would usually come with it.

In normal circumstances, family, friends and teachers will go straight in for his hands to greet him, and then move to his wild hair and brush their fingers through it. This is what Zachariah has demanded over time, everyone has spent time to get to know this about Zachariah and built their own way of communicating with him. Now that we are on lock down, with no one in the home other than his Daddy and I, he is really missing the daily interaction with his family, carers, teachers, and friends.

But we must look at this as a blessing, technology right now helping so many people stay in touch, and for that we must be grateful.

Other blessings may include having the time to be still with your children, start something new with them, or work on projects you thought you may never get to do.

We have just started our 6th week of self-isolation, and the cracks are beginning to show. It really does take a community to raise a child with Zachariah’s care needs, so when the world goes on lockdown and it is down to you to wear all of the hats, it becomes extremely tiring. We have gone from carers several times a week to no help at all overnight, which has taken its toll on us both as parents. I have tried my best to keep a routine, give myself time out, create a jobs list to work through, and found new activities for us to try as a family.

I want to give a huge shout out to my fellow parents/carers out there, who are home-schooling, and being the sole carer for their child right now.

For those, like us, who have had to shut the door from carers, medical helpers and respite. For those who are struggling to cope with the everyday demands of looking after a child with disabilities.

For those who are experiencing new levels of anxieties as they fear themselves or their child contracting this awful virus.

For those who have children too poorly to be home.

For those who must go out to work.

To every parent/carer out there… you have got this!

You are all doing amazing, I am sure of that! Keep on going, and we will get through to the other side together.

Finding the Rainbows

We’ve practiced finding rainbows.

For all of us in this community, COVID-19 and the response to it brings many challenges. We rely on services, on medical appointments, on respite, on school and perhaps most importantly on the carefully constructed set of coping mechanisms that have seen us through moments we thought would bring us down. They might not be sophisticated or complicated – for me they consist of running while ranting to my good friends – releasing both endorphins and pent up emotion, of popping to a good friend for a coffee and, perhaps the one I am missing the most, an hour to myself just to remember who I am. I know that there are so many of us who feel that the rug on which we so delicately balance has been well and truly pulled from under us.

But here’s the thing. We’ve searched for rainbows before.

I think many families of children with additional needs, a life limiting diagnosis, a devastating moment in the lives of everyone they know and love will have felt a sense of recognition over the last few weeks. I am not likening a diagnosis of any kind to the worldwide devastation of a pandemic, I’m really not. I am just saying that I have felt the echoes. And with those echoes comes the knowledge that we will get to the other side.

We know how it feels when life falls apart overnight. We know what it is to feel that the world has changed beyond recognition and that it no longer makes sense. We know isolation, all-encompassing fear and total darkness. We know not understanding how to negotiate a life that feels impossible that somehow has become ours. We know how surreal it is when something we never thought would happen is our new reality. We know, realising that we will never be the same again. We know the endless trawling of Google to find answers that don’t exist. We know being thrust into a world with new rules that we don’t understand, a new language that we’ve never heard.

And then we know learning how to live again.

We know learning how to find the moments that bring us joy. We know looking for the light in the darkness, that it might look different from the light we had before but that, just maybe, it’s stronger. We know working out what hope now means and searching for it.

In short, we’ve got this. We’re the experts here. Our lives are about finding the rainbows and holding on tight.

Friendship

They say if friendship lasts for 7 years then it will last a lifetime. This may be true, but there are also life events, where when you make a friend, you know you have a friend for life. Since having my twins, this has happened to me.

Friends I knew I had made for life were my twin group.

We weren’t even friends by choice, we were forced upon each other, pregnant and hormonal and told to exchange numbers. Our midwife, Sandra, said we would be each other’s lifelines through the journey of being parents to twins, and she was right. They are a group like no other. We share with each other what no one else could understand going through- the heartache, the struggle, the grief; but also, the happiness, joy and memories having twins leads to.

These are the women I turn to with everything.

They never judge or berate; they support and help to guide me through this difficult journey and make sure I know that I will never have to do it alone.

Sandra is a friend for life too. She was there from the start of our twin journey. A strong, ferocious woman not to be messed with. From the start of my pregnancy, she was open and honest about how hard it would be, the risks involved and the struggles we would face as well as the happiness our babies would bring. She was there just hours after I had given birth, when my babies were taken to another hospital and I was sobbing, heartbroken at not being with them. She gave me the courage to be able to go to my babies and do everything I possibly could for them whilst they were desperately unwell.

These are the friendships that mean the world to me.

They are the friends I did not expect to make, and certainly did not expect to speak to every day for the past 4 years, but that is our reality. We were forced together by chance (and a slightly terrifying midwife) and bound together by our twins.

It is rare we get chance to meet up, but when we do, we make it count. We hug, we laugh and we share memories. We were supposed to meet up this month, but as with all plans, this hasn’t gone ahead. Yet everyday we are there for each other and always will be.

Take A Load Off Dinner

Having a household of three growing boys and my husband, it seems that I am always in the kitchen. There is never a shortage of “I’m hungry’’ going around.

Now that life is all about being locked up 24-7, I have been struggling with ways to keep the boys fed and keep the diversity in meals going.

When all you have to do is eat, sit around, eat some more, and binge on Netflix, cooking turns into a chore and you get tired of the same old meals. Thanks to my secret listeners on Facebook, I had an ad pop up on my feed for a meal service called EveryPlate. It was advertising three meals with two servings each for less than $3.99 a plate. That was six meals sent to my house to make, for less than $40 including shipping!

I have always wanted to try a meal service, and with Oliver being so picky yet striving to provide him with the best choices, I opted to try this one out. Three months in with the service, and needless to say I am in love! I have been able to get multiple people sign up for the service (no pyramid scheme here), and they love it too!

Every Tuesday, I get my meals and ingredients sent to my door in a box with adequate packing and ice blocks to keep everything cold and fresh. In the box is the meals you pre-selected along with the recipes on how to prepare them. Every recipe comes with everything you need, starting with the meats, fresh produce, all the way down to the seasonings and herbs. Most of the time you just need to add your own flour or water and oil.

Because I have boys who can eat, we get 4 meals sent to our household each week. With the option to skip or cancel anytime, I am never in fear that I am locked down in some kind of contract. And no, I did not or am not getting paid to write this. Lol.

Just from one family to another, this has saved so much time and stress off of my hands and mind.

The recipes are ever changing and always top notch. Oliver, being my kiddo who has the allergies and pickiness, has enjoyed himself some bacon grilled cheese, chicken sausage tomato soup, and even Honey Chipotle chicken!

With it being such a risk to head out to the stores these days, this is such a great option to have your food delivered right to your door!

**Disclaimer** Other food/meal services available

Be Kind

One of my favorite celebrities gives the best advice at the end of their show, yes “spay and neuter your pets” is important (thanks Bob Barker) but more importantly Ellen Degeneres says “Be kind to one another”.

These are words I try to live by.

I think I have always been this way however; I am much more empathetic and aware after going through the NICU experience with my twins. There is something about facing death and watching miracles that changes a person.

Thankfully you don’t have to face death in order to choose kindness. We are all unique passengers on this train of life. We all have unique experience and feelings. There are always two sides and feelings involved in each story. It isn’t always easy but trying to understand each side is the root of kindness. We can’t possibly look at someone and see the underlying pain or feelings they are carrying.

Now more than ever we need kindness in this world.

Neighbors helping neighbors and friends supporting friends. We have had friends and neighbors go grocery shopping for us, bring us coffee and routinely check in since this pandemic started. We are working hard to do the same. 

When we do have to get out, we reach out to neighbors and ask if they need anything. We offer coffee if we are at a coffee shop. I have been supportive in the ways that I can. I wish that I could do more but with a child and nurse that are immune compromised my most important job is keeping them safe.

I hope that during this time society becomes more humble, realize what is important, slow down and cherish family time.

Stay Healthy Everyone!

More than Brothers

Rory and Alfie have always been close- they shared a womb after all. But beyond that, they have a bond that I adore.

When you have a child with complex medical needs, you quickly realise how hard it is for others to understand their needs and wants. They do not know the change in vocalisations or facial expression, or the cry that means frustration compared with the cry that means genuine upset and distress. They have to learn it which is not always easy.

Someone who hasn’t had to learn, who knows instinctively better than Zak or I is Rory.

He knows exactly what Alfie wants and needs. If Alfie cries, Rory will present him with the toy or item he wants (though occasionally he will have been the one to take it away), or he will go and lie next to him as he knows he wants comfort and to be close to someone.

Rory isn’t shy in telling others if they get it wrong either, if they give Alfie the wrong toy or book, or if they take away the food when Alfie is still hungry. Rory knows, without being taught, and is Alfie’s constant advocate, without being asked to, at the tender age of 3.

When meeting new people, Rory likes to introduce Alfie to them as ‘my twin Alfie’. He will often tell them that Alfie’s arms and legs do not work properly, that he needs extra help and cannot talk. But he also reassures others that this is okay, and ‘we just need to help him’. This is Rory’s way of ensuring everyone knows about Alfie so that Alfie is kept safe and well. It is something we have never taught him, yet he has started to do. The same way he knows Alfie needs medication and appointments with doctors to keep healthy, he knows Alfie needs a higher level of care and wants to help ensure Alfie gets it.

This is the opposite to what I feared would happen.

As Alfie got each new diagnosis, I thought they would never have that ‘twin bond’ where they intrinsically know what the other wants, that their differences would be too much as they would have so little in common. But in actual fact, Alfie’s disabilities have highlighted it more than I could have imagined.

It is true that they just know each other, they will often laugh together at nothing, they will comfort each other when one is sad, and they truly enjoy just being together.

Tips to Survive Lockdown

Our daughter Isla has autism. Although she loves structure and routine I struggle sticking with the simplest of schedules. Here are some ideas that have helped us plan our days and hopefully may help others.

Give yourself a break

The best thing we can do to support our children emotionally is by keeping calm and having some sort of structure. That doesn’t mean we need to place more stress on ourselves trying to do that. Every hour doesn’t need to be accounted and it’s okay to have some down time.

Schedule your day

Not just for them but also for you. Start by adding what you want to achieve in your day to your schedule. Use those times as device/screen/TV time. Then schedule in activities around that. Use a visual schedule and use a timer for each activity that counts down, so your child knows how long they have got left.

Activities

This is the perfect time to focus on life skills rather than academics. Choose one life skill you are trying to get them to master and work on that for a week until they have mastered it. Try not to bring in too many at one time as repetition is needed to cement that skill.

For learning opportunities pick a topic of interest to your child and base any work around that. For example, our daughter with autism enjoys nature and birds in our garden. We are identifying the birds and finding out what they eat. We have created a project in the literacy programme Clicker. We made a bird feeder and are hoping to attract some birds so we can take some photos.

Create a visual choice board of available free time activities. This will give them options to choose from. Help your child get out all that is required for the task and help them get started. Praise them for staying on task and be prepared to keep it short if necessary.

Include Sensory Play. Although sometimes messy will help regulate your child.

Bribery & Rewards

Plan your schedule so rewards follow tasks your child may find more challenging. Or create a sticker/star chart where a chosen reward is given for good behaviour and sticking to the routine. If your child doesn’t respond to reward charts have instant rewards during the activity to reaffirm the desired behaviour. If you are choosing device/screen time as your reward, be prepared for having to withhold those if you do not get the desired behaviour. As this is sometimes the only option to allow you to get things done you may have to choose a different reward!

Makes Some Rules

Just like school write up the rules for the household.

Self-care

Don’t forget to take some time for YOU during this time. Schedule in some exercise and get outside as much as you can even if it’s in your own garden.

Movement

Exercise isn’t important just for us but also for our children. Find whatever motivates them and get them moving. Isla enjoys her bike, so we go out for a ride each day. We are able to do this at the moment here in New Zealand, but it could be an obstacle course or dancing for example.

Connect with others

Zoom or Facetime calling gives them an opportunity to connect with their friends and extended family. We have a call each day with a couple of Isla’s friends and all work on an activity together. This is highly motivating for Isla.

At the end of the day we are all trying to do the best we can and remember you cannot pour from an empty vessel.

Mid-day Gratitude’s and Challenges

The kids and I have just finished our lunch on the back deck. The sun is shining and I know we are lucky to have a back garden and outdoor space to stretch our arms and legs and enjoy a little bit of nature during this period of self-isolation and social distancing.

We are lucky to have each other.

We haven’t done any online learning today. We haven’t been on any virtual museum tours, math or reading websites. We spent the better part of the morning with me making an attempt to place an online grocery order and the kids watching celebrities read to them from Storyline Online. The order didn’t go through. They had three books ‘read’ to them. Yesterday we spent way too much time with screens, so today we are taking a break. Mostly. It’s hard when visiting with friends means more screen time too.

My daughter, Tallula, has painted florescent rainbow stripes on the back-garden fence and it brightens everything. I put the vintage sheet with yellow roses over the dirty cushions on the patio couch and we choose music from Seb’s iPad to sing along to in the sun. I rake up leaves into big piles. We roll through the garden spotting purple, yellow, and white crocuses open in the sun.

Getting Sebastian, to the back garden in his wheelchair is a bit of an obstacle course. I fold up the ramp at the front of the house to navigate over the raised corner of the front garden without tipping his chair forward or bumping into the fire bush, more skeleton than bush. We manoeuvre past our neighbour’s large basketball and hockey nets, situated in the centre of the shared alley. Later the basketball net falls over in the wind, blocking our path completely.

Tallula points out both the blooming flowers scattered throughout the garden and Ewok’s dog poo. Sebastian is uncomfortable from his morning blend, but I try to clear up the garden anyway. Sebastian’s dog, Ewok, runs up to give him kisses and Seb settles for a moment.

A pair of chickadees swoop down just over Tallula’s head and she screams in horror, as if bats in a cave have been caught in her gnarled hair. This sets Sebastian off, and he is now inconsolable. I will have to enlist his dad, working from home, to help calm him completely. I feel lucky he can take that break to help me in that moment.

I wash my hands for the umpteenth time and take over with Sebastian. I take his growing almost twelve-year-old body out of his wheelchair and carry him up the stairs to the deck and into the house. I vent his tummy to get the air out and give him a toileting break. He wouldn’t want me to share this, but it’s an important part of the picture of our day. Due to the pandemic, we’ve canceled all caregiver support.

We need to ensure Seb stays healthy.

We return to the garden where Sebastian feels calmer now and I rake the leaves while he watches his sister paint. The sun is still shining. Sebastian and Tallula’s dad joins us on the deck after lunch, giving me a half hour break to do something for myself. I find a quiet place inside and take some deep breaths to centre and then do some writing. I feel good in his moment, refueled. Ready to take on the second half of the day.

I carry Sebastian down the back-deck stairs and we join Tallula at her painting station. We cuddle up on the patio couch and read The Fantastic Mr. Fox by Roald Dahl. Ewok comes over to give Sebastian kisses and lays at his feet. We read for nearly an hour.

Sometimes it’s one day at a time, and sometimes, it’s just hour by hour. Today we finished a book in the middle of the afternoon with the sun beating down on us. We do what we can with what we’ve got.

Today, it’s a seesaw that just might balance out.

The Year No One Will Forget

The year of 2020. I am not sure about you, but the year started off with so much promise. So much to look forward to. Then three months in, it all seemed to come crashing down.

Starting this year off, I had just landed a great job states away, with what I was currently going to school for.

Becoming a surgical technologist! Graduation was set for May, and my career was set to begin in July. With the plan to move more than one thousand miles away, things were looking like a great, fresh start! One that my family and I were very excited about.

Here we are now, in April, and things have spiraled so quickly down the kitchen sink; I am just waiting for someone to turn on the garbage disposal. 23 days is how long my family and I have been home in quarantine. Not because we are ill, but to protect one another and be safe.

My graduation has been canceled and possibly rescheduled to August, and that is all dependent on if we can complete the rest of our clinical surgeries in time. The kiddos, as well as my school, have taken the form of online learning. So not only am I having to learn myself, but I am also having to be the teacher for them. And I don’t know about you but having three growing boys in the house 24-7 sure eats your pantry empty before you can even manage to stock it!

Anywho, I guess I will end the pity party.

I am sure grateful for our health, especially Oliver as he is medically fragile. I am grateful for the time and bonding we have all done, even when we want to pull each other’s hair out. I am also grateful for the time I have gotten to just relax and catch up on things I love such as reading.

How much longer can I keep this up though? I have no clue. I honestly don’t want to find out, but I will stay put as long as I have to in order to keep us and others safe. I hope you all are following the same precautions and keeping a healthy and clear mind through all of this chaos!

From one quarantined family to another, stay safe and wash those hands!