We are still relatively new to the world of tube feeding.

My son Joseph has just turned 2. He has been fully tube fed since birth. 

For anybody that doesn’t know, Joseph sustained a grade 3 Hypoxic brain injury at birth (lack of oxygen and blood flow to the brain, causing damage to numerous areas of the brain). 

We were told by medical professionals when he was born that a lot of his reflexes were absent.

Including his suck, swallow, gag and cough reflexes.

There was a chance they could kick back in but know real way of knowing. 

At the time, I hopefully and perhaps naively assumed that this would be a temporary measure as I knew that I myself had been tube fed for a short period of time as a newborn. 

It took a while before it fully sunk in for me that I would have to say goodbye to the image of my son with podgy, chocolate covered cheeks. 

I found this difficult at first because  it is human nature to associate such feelings of pleasure, bonding/socialising and enjoyment with food/mealtimes.

It felt like a huge thing that he would miss out on.

As time passed though, it became the norm, much like many of his medical needs.

I have accepted that it is highly unlikely that Joseph will ever eat or drink anything orally.

I’ve dealt with my sad feelings about this as I know that he doesn’t know any different.

You can’t miss something you’ve never known. 

Despite tube feeding becoming just another part of our daily life, it has been far from plain sailing.

Joseph’s journey began with small amounts of expressed breast milk via a nasal gastric (NG) tube. (A tube inserted through the nose and directly into the stomach).

I had never planned on breast feeding during my pregnancy but at a time where I felt so out of control and helpless, I was over the moon to be able to have one important ‘Mum’ thing that I could do for my baby.

I managed to express my own milk for 8 weeks which I’m told under such stressful circumstances, was amazing. 

At 3 weeks old, Joseph began struggling with silent reflux and with no gag or swallow reflexes led to frequent milk aspiration, chest infections and some big scary incidents where medical staff had to intervene to get him breathing again.

It was quickly decided that his reflux was too severe to tolerate being fed into his stomach, despite being given numerous reflux medications.

He was then placed on nasal-jejunal feeds. (A tube inserted into the nose, through the stomach and into the second portion of the small intestine or “Jejunum”).

This meant that the milk would bypass his stomach altogether to reduce the reflux as much as possible. 

The problem with NJ tubes is that they need to be checked that they’re in the accurate location under X-ray.

This means increased exposure to X-rays if they become blocked or pulled out – which can both happen relatively easily and frequently.

The other issue is that the tube can curl up inside and end up going into the stomach or chest and there would then be the risk of aspiration again.

Because of these risks, it was considered by Joseph’s team of doctor’s that it would be unsafe for him to come home. 

Joseph remained in hospital for almost 8 months as we painstakingly waited for him to gain enough weight and grow strong enough to undergo gastrostomy and fundoplication surgery.

A gastrostomy is a tube surgically placed directly into the stomach for feeding.

A fundoplication is a procedure to help keep the stomach opening closed in order to stop reflux coming up into the windpipe and back down into the lungs. 

Joseph’s surgery went well but he struggled to breathe on his own after they took him off the ventilator.

He had to be placed back on the ventilator and was poorly in the ICU for a week.

He built his strength back up and was then transferred back to our local children’s ward where we began putting plans in place for him to finally come home. 

Following the surgery, feeding was going very well for a period of around 8 weeks and then we ran into more problems.

The fundoplication hadn’t been as successful as we’d hoped.

His reflux was back and he began vomiting, losing weight and having gastric bleeds due to possible ulcers.

The reflux and vomiting then led to aspiration and chest infections.

He was in and out of hospital.

It was eventually decided that it would be a better option for Joseph to go back to jejunal feeds, this time via a Gastro-jejunal feeding tube (GJ).

This is a simple procedure that can be done under X-ray and a mild sedative.

It is similar to the NJ tube except instead of going in through the nose, the tube goes directly through the gastrostomy and into the jejunum.

This still poses risks but up to now has proved our best option.

Since the transition to GJ feeding, Joseph’s health has improved massively.

He hasn’t had any chest infections or hospital admissions for a whole year.

I think although social distancing, isolating and stricter hygiene measures have had a hand in this, it is mostly down to the jejunal feeding. 

The downside to this type of feeding is that Joseph has to be attached to his feeding pump bag all day every day.

This can be restrictive and challenging at times as he likes to roll around and he then gets tangled in the tube.

It can also be difficult when we’re out and about, but like everything else it has become our new normal and we’re just used to it being there.

I can’t help but be extremely grateful for it’s presence because it means that Joseph can be fed safely. 

I often see articles weighing the pro’s and con’s of breast feeding Vs bottle feeding.

When I was pregnant and attending antenatal classes there was absolutely no mention of babies going on to need tube feeding, temporary or permanent.

I feel this is something that should be represented more.

After all, fed is best, whatever form it may take.

In the last few weeks we had two big losses in our family.

Ethans great grandma on my side and his grandma on my husbands side.

We have no idea of Ethans understanding on death and loss.

We included Ethan in the chats we had with the girls.

We read a lovely story about a grandpa who dies and how the little girl is sad and misses him.

They make pictures and remember memories spent with him.

We then told them about my grandma and how poorly their grandma was.

When their grandma passed away we spoke again about the book but didn’t read it this time.

Ethan fell asleep during this conversation so I’m not sure what he understood if anything.

We have spoken to him again since as we remember Grandma and all the special times we shared with her.

When people who are close to Ethan go on holiday or don’t see him for a period of time he notices that.

When they return he will ignore the person and make them work really hard to regain his smiles!

We’ve explained where the person is and when they return he sees them again.

When someone dies he obviously won’t get that return to then see them again.

Does he just think they are away and will be back soon or does he realise he won’t see them again?

The answer to this is that I really don’t know what he understands.

We’ve been outside to look for Grandma in the stars, lit a candle and talked about  memories together.

We all spoke of Ethans memories and we’ve shared photos too.

He’s really been included in the process but I have no idea whether he understands.

Ethan has different emotion reactions to his own feelings but how far this understanding goes I’m not sure.

He also picks up on when we are feeling different emotions and is very intuitive of that even if he doesn’t understand the reasons why.

We are going to explore some more books about feelings as this is the only way I feel I can give him the tools to maybe understand.

We will continue to include Ethan in all our talks about loss and death and adapt to his level.

For books we use on this journey head to our Instagram livingwithmyhero. 

During the week of February 8-12, 2021, The 11th annual Feeding Tube Awareness Week® will be celebrated globally.

We’ve been a tube feeding family for over fourteen years.

Two of our kids, Lilly and Chance, came home from the Neonatal Intensive Care Unit with G -tubes.

Chance was able to have his removed when he was three years old, and Lilly still has hers.

The decision to place a feeding tube was not easy, but it has been a lifesaving one, and both kids have thrived since.

I have had people ask me, “Why can’t you just make her eat?” of my now 14-year-old daughter.

Like it’s that simple.

I can’t tell you how much time I spent in the NICU at UC Davis, trying to bottle feed her.

I watched her gasp and sputter and writhe as I tried to get her to take even a couple of ounces.

I watched her vomit so much that she started losing weight, and I watched them try formula after formula, seeing if one would “do the trick.”

The same thing happened with my Chance, who is now ten.

We have gotten some stares when we have had to feed the kids in public, although I have to say we have not had any nasty comments or negative reactions that I have heard about from other parents of tube feeders- we have been lucky in that regard!

After Lilly was born, life as we knew it turned upside down.

When my oldest was a baby, it was relatively easy to go anywhere with him.

Just pack a diaper bag, a few toys, and you’re good to go.

Traveling anywhere with a tube-fed child requires extra planning, but it’s far from impossible.

We can’t exactly be spontaneous anymore, but we do get to have some adventures!

Before Chance was born, we took a cross-country road trip with our (then) three kids to Massachusetts for a family reunion.

That trip took months of planning, but it was well worth it.

I can only speak to our situation, but I would estimate that when Lilly and Chance were both tube fed, the feedings took 13-14 out of 24 hours each day.

There’s also food preparation, G-tube cleaning, venting (a method of “burping”), and administering medication if needed.

Tiny backpacks made for feeding pumps made it possible to feed on the go, but we could never let them out of our sight because one of their favorite things to do was unhook themselves from the pumps.

No matter what we tried, they still managed to do it or make a great attempt.

Chance has always been interested in eating- even when he was one hundred percent tube fed.

He would chew on clothes, “chewies” that he got from his occupational therapist, and would try and grab food out of our hands all the time.

Lilly was the complete opposite.

She wanted nothing to do with food and turned her face away at any offers of food.

We also tried a blended diet with her, and she didn’t respond well to it.

Finally, when she was about seven years old, she started drinking out of a sippy cup.

Now, at age 14, she is taking small bites of soft food here and there.

She may never be able to eat fully solid food because of the anatomy of her jaw; she is unable to chew solids well enough to break them down to swallow.

Every time she’s tried to eat anything more solid than yogurt, she ends up choking on it.

Every tube-fed child or adult has their own story.

Another question that I have heard often is, “How long will she have to have the tube.”

No one can answer that definitively.

It depends on the person and the person’s condition.

I have two kids with the same condition, and one was able to have his feeding tube removed early on and now eats more than his two older brothers combined.

The other will most likely have hers for life.

Tube feeding has been part of our life for so long that it’s our “normal” now.

Lilly doesn’t know life without her feeding tube, and Chance doesn’t remember life with his.

All he has to remind him now is the little scar that he calls his “other belly button.”

When we found out during our fetal abnormality scan that one of our triplets had spina bifida…I never thought I’d feel pain like it again.

Until recently.

Jacob has been through so much since being diagnosed with epilepsy at the very end of 2018.

His seizures are multifocal meaning they originate in several places all over his brain.

He can have a variety of symptoms, but summer 2020 was incredibly difficult for reasons that had nothing to do with covid-19.

Jacob was admitted to hospital multiple times and ended up needing to have shunt revisions for his hydrocephalus.

In all honesty, he’s never recovered from the experiences he had that summer into autumn.

It’s left him with emotional and physical damage that is showing in every aspect of his life.

Our little boy has changed.

It isn’t that “normal” growing up and missing them as a younger age twinge all parents go through, but an almighty sense of “where did he go?” that led to literally half a year of tests, appointments, talking to charities, talking to other parents, crying, asking “why him?” before finally being told he has brain damage.

All the seizures, surgeries and missed school have added up and caused trauma in a brain that is already waging war daily against the effects of hydrocephalus and epilepsy.

What did this mean?

In blunt terms, he has regressed socially, emotionally, behaviourally and educationally.

He was in a mainstream school but it became painfully apparent that he wasn’t coping.

He was experiencing non-epileptic seizures (NES) multiple times a day in school because he was so anxious and unable to cope with the pace of a p2 classroom of children who’d no obvious physical or educational needs.

So his medical team asked for educational psychology to assess him and it was a pretty damning report.

To see what we’d worried about written in black and white was so hurtful, yet also strangely liberating.

The decision was made that Jacob needed to move to a specialist school.

We’d had support from a particular school since he was beginning preschool so I was naturally drawn there.

We were incredibly lucky that when I rang the school, they’d a place available in p2, or as they called it, the “Toucans”!

It all seemed to move very quickly after his annual review with his mainstream school and I shed a lot of tears over the whole thing.

In saying that, it has somehow always felt right.

As a trained learning disability nurse it feels painfully ironic that my child has brain damage that presents as a learning disability, although it’s meant I knew exactly what I wanted a specialist school to offer him.

I was adamant that it didn’t become “common knowledge” until we’d told Jacob, Ben and Chloe.

I got a lot of advice on how to do this but it didn’t make it any easier.

Despite opening with “we have some amazing news, (school name) want YOU to join them! How lucky are you!” they all sobbed their hearts out.

I think that was one of the hardest moments, having to hold it together for them when really I felt the same way.

He did really like the idea of being called a “Toucan”, so I got him a little keyring of one that he is now nursing daily and has called “Peckers”.

I have also bought a big Toucan that I’m trying to get personalised to give to him on his first day that is fast approaching!

We’ve reached a point now where we are excited about the opportunity Jacob has been given to join this dynamic school.

He will be surrounded by pupils who go through similar struggles to him which we hope will help him cope emotionally with everything.

When I spoke to the school, none of his medical needs seemed to phase them which filled me with such confidence.

He isn’t going to be the “different one” any more which I think he desperately needs.

So our little Toucan is set to begin his new adventure in the coming weeks and we just know he is going to absolutely knock everyone’s socks off!

I’ve always said all I ever want for my children is for them to be happy and I really hope this move helps Jacob get back to his happy, bubbly self! 

I joked the other day about being a control freak…or a “control enthusiast” as comedian Sarah Millican affectionately calls it, sounds so much better.

As I thought about it, I felt like maybe it was a trait I should apologize for, or try and address, but I don’t think I want to!

There’s always been a bit of it there, but it’s definitely got stronger since I had Heidi. (Heidi was born in 2015 and experienced a HIE event, a lack of oxygen to the brain, shortly after birth. She has cerebral palsy as a result and lots of extras!).

You see as soon as things took a dramatic turn with Heidi, any control I may have had was taken away from me.

My birth plan (which was pretty relaxed to be fair), went out of the window.

I didn’t get to choose the first blankets she was swaddled in as the room was full of doctors and she was whisked away to intensive care.

I didn’t have the choice whether to breastfeed or not as she was fully tube fed (and still is).

I didn’t choose how we spent our first few weeks as a new family because we were in hospital, with doctors and nurses doing all they could whilst we watched on in shock, before our fight and survival mode kicked in.

The only thing we (Steve my hubby and I) could do was try and claw some of that control back.

I felt a little better by tidying Heidi’s hospital room; a spreadsheet (I know, geeky or what!) gave me security as we tracked Heidi’s feeds and weight gain; a diary helped me to log changes and progress, no matter how small; even ironing muslins made me feel like I was achieving something, when so many other things had been collapsing around me.

And this is how we carried on, for weeks and months, and as Heidi got stronger, so did we.

We established a routine.

We got organized with feeds and meds.

We packed a hospital bag (our “oh sh&t” bag!) in case we needed a short-notice dash to Children’s Unit. We drew up a list. We planned ahead.

We had spare spares (nappies / suction machines / chargers). We did everything we could to make life as easy as possible.

And it made me feel so much better.

Almost 6 years on and we are still pretty much the same, apart from the ironing – that stopped completely at the start of the first lockdown!

I draw up Heidi’s meds for the following 24 hours, I do a weekly medicine check so I can ring the pharmacy and order anything we might need, we still love a bit of an Excel doc….the list (literally!) goes on.

It’s just routine, and I don’t do it in an anxious way, it’s just how I roll.

I realise that control is my comfort.

I like a plan, I like to be prepared (never come to me for anything spontaneous!), but I also recognize that sometimes life doesn’t go to plan.

I work hard on accepting when control isn’t possible, how I have to adapt, or re-focus.

It’s way out of my comfort zone, but sometimes that’s not a bad thing I guess.

I never thought I would miss being in my office at work as much as I currently do.

Its been almost a year since I was last there, and then it was only a flying visit to rescue my beloved plants and a few essential text books before the building was locked up due to Covid.

As a working parents I’m often asked how I manage to fit everything in – childcare, hospital appointments, work and so on.

Mostly, I can do it because Sam’s Dad is incredibly supportive and is Sam’s main carer… but there is also crippling guilt that I’m not doing everything a ‘mum’ should do for her child.

I’m not always there.

I regularly miss hospital appointments and it’s common that I’ll be working at weekends and in the evenings, now more so than ever – anyone who thinks teaching online is somehow less work than teaching in person is seriously mistaken!

But people often miss a very important aspect of being a working parent – and that is the sense of identity it brings.

I’m not just Sam’s Mum.

I’m an intelligent professional in my own right, and having that space to focus on work makes a huge difference not only to productivity but to mental health too.

Y’see, going to work is my respite.

Its where I don’t have to worry about how my boy is doing, when his next meds or feed is due, whether he’s doing enough therapy.

I’m just too busy at work to worry about it – plus I know he’s usually at school and is perfectly safe and happy.

Now in lockdown, I’m struggling to balance being Sam’s mummy and doing all the things I want/need to do with him, alongside working fulltime and having a laptop constantly open.

Plus there’s no chance of a snow day when home school is in session.

Covid and lockdown has taken that away, not only from me but from thousands of others too.

Its much more difficult to be disciplined about stopping work at your usual time when you’re at home, so many are working far longer hours than normal.

Loneliness and burn out are becoming an epidemic in their own right.

Kindness costs nothing, and in 2021 more than ever we need to look out for each other.

Video and phone calls are no substitute for actual human contact, but they are certainly better than nothing.

I had my first panic attack for a long time this morning.

I always feel so silly afterwards.

Sometimes the lack of control we have over so much in our lives really gets to me.

We had our first hospital admission in over a year recently. We got home yesterday afternoon after a weeks’ admission.

We work so hard everyday to try and avoid hospital.

The one perk to the pandemic has been that Amy hasn’t caught the colds/flus that tend to land her in hospital. 

For a few days Amy’s breathing hadn’t been great.

We had been doing regular nebulisers and suction in a desperate attempt to prevent it becoming an infection.

On a Monday I took her to be seen in hospital.

They diagnosed viral induced asthma and sent us home with an inhaler plan.

Setting alarms for every 4 hours including through the night is enough to wipe me out physically and emotionally but we persevered hoping she would soon feel better.

We got to Wednesday evening and she spiked a very high temperature, had increased work of breathing, a tracheal tug, and sounded so rattly and unwell.

We kept her stable overnight and took her to hospital again in the morning. Several bags carefully packed and loaded into the car.

We didn’t need an ambulance this time.

The doctor had a listen and was certain in his conviction that this was a bad chest infection.

Her blood oxygen levels were low so they hooked her up to oxygen and we took her for an x ray. 

One thing we don’t always mention in these times is that not only are we worried for our child and emotionally depleted – we have the very physical job of constantly lifting in order to get an xray.

With non mobile children there is a big expectation that in order to weigh her we sit with her on the weighing scales then without so they can work out the weight.

This combined with constant repositioning in the bed and leaning over to do nebulisers/pad changes etc, and my back is in pieces.

“Look after your back” I am constantly told, by pretty much everyone.

But I’d love to see how everyone recommends we do this in this setting.

That evening she needed airvo (humidified oxygen), two hourly nebs of both kinds, along with good positioning and suction.

A cannula was inserted for antibiotics.

It breaks my heart every time seeing the struggle to find a vein and having to put her through this yet again.

That part never ever gets easier.

It’s a means to an end, a necessary intervention; but does she know that?

Due to the pandemic, Amy’s Dad is furloughed.

This meant we could share the hospital duties and could take turns to get a real sleep at home every other night.

That night her blood oxygen became dangerously low.

Her airway started to close. “The pneumonia has infected her airways” the doctor told Phil.

They planned a transfer to the high dependency unit and steroids, but thankfully with a lot of work from the team they eventually stabilized her.

It’s only when I reflect on the words I have written there… “worked on her”, “stabilized” “dangerously low”.

This is our child. This is a traumatic event.

And yet we often discuss these events so candidly as if it were as normal as drinking a cup of tea.

I think so much of what “medical families” (whatever term is appropriate) endure is completely overlooked.

These are the reasons we don’t sleep at night (or one of the reasons at least!), the reason we don’t relate well to the rest of the world sometimes, the reason we detach or otherwise act differently to how we used to.

Seeing your child turn blue should not be a fairly usual occurrence. And this is what I struggle to grapple with. Just the unfairness of it all. 

This chest infection was unpreventable.

Even undetectable until the last moment.

I am glad we took her in when we did, but I don’t like living in that state of heightened alert, watching for every little change wondering whether to get her checked out or not.

If we took her in over every little concern, we would never leave the hospital and that would be ridiculous.

I try to accept that our normal is a different normal, and to accept that there is a lot out of my control… but at the same time it hurts. 

I don’t do well when we are in hospital. For some reason my eczema and sinuses kick it up about 10 notches the moment we step into the place.

My hands bleed, my eyes swell up and go red.

So as well as everything else my body seems to reject the whole thing and I become unwell as well but not in a position to recover. 

The hand issue this time wasn’t helped by a cdiff flare up involving about 10 nappy/clothing and bedding changes per day.

I don’t know how nurses and doctors do it! I would have no hands left working there.

Only one parent at a time is permitted into hospitals here at the moment.

This makes meal planning a bit tougher.

We’ve been living on crisps, sandwiches and chocolate for the last week and my body is crying out for nutrients.

I keep promising myself that next time we go shopping, I buy a load of veg and salad items.

They say to be well and energised you need to eat well, exercise and get enough sleep. Those are 3 tricky things when in hospital. 

I take my hat off to all of the families that are reading right now and thinking “wow, we are in hospital literally ALL of the time”.

I realise that there are so many out there that could only dream to be in as much as we are.

But I really feel that we are all in this together and that struggles are struggles irrespective of “who has it worse” and so on.

I spend my life in constant awe of so many of the families we have met through Amy.

As an outsider looking in I am amazed at how you plod on.

I know you have no other choice, and that if I were you I would do the same.

But you make it look easy, one thing I know I don’t do!

I hoped when we returned home yesterday that Amy would be thrilled to be out of that same room, and back home.

But instead she was ripping at her hair, crying, shouting, and being generally inconsolable.

Even when things are our “normal” and stable, the daily behaviours and challenges we face can be quite extreme.

I know the best thing to do is to breathe through it, stay calm, be patient, and not take it personally.

But I did feel a pang of sadness in my heart that she was so unsettled all of yesterday.

I hope that in time we find ways to help her communicate so we know what can be done to help her.

I do also fear that actually this is just how it is – the neurological irritation will cause her to act this way long term, and that actually she isn’t going to change and that really it’s me that needs to change and learn to cope better with the difficult situations we often find ourselves in.

Sure, I can meditate in my spare time, or go for a walk, or talk to a friend.

We all have our coping mechanisms.

But sometimes, you really just need someone to agree, yep.. What you’re feeling is normal, and no it isn’t fair.. I’m not going to try and fix this, or give you unsolicited advice… I am just going to be here with you, non judgmentally, and that’s it.

You’re not alone.

I think all I want in life is those around me to be happy, and know how loved they are.

And to have had sufficient sleep to function. It shouldn’t be too big an ask, but sometimes it is.

One day I will make my peace with that, I hope.

Moping and ruminating doesn’t get the washing done, the phone calls answered/appointments attended/forms filled out, the meds drawn, the supplies stored away and all of the rest of things – but sometimes I think it’s okay to not be okay.

I am truly blessed in my support network.

I know a lot of people care about us and are rooting for us, and even on the gloomiest days that isn’t always enough to pick you up.

I am so thankful to everyone in our lives, to those who care, and to those who continue to inspire me on a daily basis.

I am grateful most of all to Amy, who puts up with so much (including me) and to Phil who is equally as responsible and capable as me… but does it all with the patience of a saint.

They both make me proud every single day and make me strive to be a better version of myself.

I typed this blog whilst sipping a camomile tea, trying to steady my breathing and calm myself down.

I had got ready for the day on a day where I really didn’t want to.

I endured my panic attack… and I know that tomorrow is a new day… I don’t know what that day will bring.

Or even how I will respond to it, but I know that I should be proud regardless… and you should be too.

* special thanks to our local hospital and respite centre who managed to supply a safe bed for our stay and also have one on order for the hospital. You have no idea how much this means to us.

By now, you’re probably very familiar with teletherapy; as interactions with therapists, doctors and schoolS have become virtual.

You’ve probably also developed an opinion about the efficacy and feasibility for this delivery model as another option for the future. I’m here to either reinforce or sway your opinion, depending on which camp you reside.

There’s no way to replace hands on intervention, but I have found great success in supporting families and caretakers through virtual visits. 

We look, listen and reassess on a consistent basis. 

We want to know what’s working and what’s not working. 

Then we provide you with a slew of solutions. 

Virtual visits, while seem very cordial and laid back from my dining room, are actually a real time analysis of your child’s movement and carefully chosen instruction and videos to help you help your child until the next time we meet. 

Prior to, and following your child’s visit, I’m online researching, writing, collecting resources and connecting with other professionals on your child’s behalf. 

Prior to a visit, I review the child’s online record and I make sure that I share evidence based strategies with you to get your child closer to that end goal. 

I try to find YouTube videos that accurately relay information, websites that have factual information, and images of therapeutic exercises that will demonstrate how you can be my hands.

During every virtual visit, a therapist can help you solve day to day challenges in caring for a child with special needs and provide you solutions and resources in real time because we’ve done this so many times throughout our careers. 

Even though virtual visits can never be a substitute for hands-on intervention; from a therapist’s perspective, seeing a child in their natural environment has often offered us an opportunity to incorporate toys and objects that you already use during play.

We’re also missing fewer appointments because there are fewer schedule conflicts. 

I hope that your outings can be to the park or trail instead of to therapy. I hope that part of your down time at home can be filled with an activity that brings you joy and relaxation. 

I wonder if simulating the use of everyday items during our sessions has increased the probability of you practicing a skill more often, in the same way, at a later time.

I also wonder if you have more time to spend with your other family members, feel less stressed about getting your child somewhere on someone else’s timeline? 

It’s important to let your therapists, teachers, congressmen and local health agencies know what has worked and what hasn’t worked so well from a first person perspective in order to have a voice in building a successful working model for the future. 

I mostly want you to know that we don’t just ‘show up’ to our visit. 

There’s a lot of thought that goes into our time together, even when we’re not together!! 

It’s been almost one year since COVID-19 turned everyone’s world upside down.

The schools in Northern California closed mid-March, and many didn’t re-open until August at the beginning of the 2020=2021 school year.

Some remained closed for weeks after that due to rising case numbers in late summer.

Our 14-year-old daughter and 10-year-old son both have significant disabilities and haven’t been back in a classroom since last Spring, and it’s doubtful that they will return anytime soon.

Not because the schools are still closed, but because case numbers are still high, and they are both in the high-risk category.

Because of their ages, a vaccine won’t be available for quite some time.

We knew there was the possibility of some learning regression, but man, is it hard…

It sucks having to sacrifice any of your child’s educational progress because the alternative is the risk of getting a virus that could be deadly for them, especially our son with chronic lung disease.

Even with all the support the school can give us, we’ve still seen some backsliding and an overall lack of enthusiasm when it comes to doing school work.

We try to mix it up and find new ways to keep them engaged.

Sometimes it works, sometimes it doesn’t.

We learned by trial and error that virtual learning doesn’t work for students like my kids, one of whom is non-verbal and another who has trouble focusing and has trouble keeping up in the online class meetings.

We switched to paper packets, which they complete and turn in each week, and even though it’s a lot less stressful than the virtual classes, it has its challenges.

In the absence of any classroom time- even virtual classes, I’ve taken on the role of special education teacher, and it can be overwhelming.

On days like these, I’ve learned it’s ok to stop the schoolwork for a while and do something fun or relaxing and return to it later.

There are a lot of days when we just read a lot or play spelling games.

On days like these, I keep reminding myself that it will work out.

They’ll get back on track eventually, and we all need a little grace during these strange times.