Can a depressed caregiver really care?

Last month was Mental Health Awareness month, it’s important to talk about how caregivers live with their own mental health issues.

In the interest of transparency, I want to share my own struggles with depression, in the hopes my experience might speak to other parents in a similar situation.

Long before I was a parent, let alone that of a special needs son, I have lived with chronic depression.

It started in my teen years, out of the blue, and despite the efforts of well-intentioned parents and psychologists, I never got a handle on how to cope with it.

Later, in college, I suffered a severe bout of situational depression for which I was prescribed both an anti-depressant and anti-anxiety medication, the former of which made me numb to any emotion, and the latter gave me terrific nightmares.

After about a year, I weaned off the anti-depressant and was fairly high functioning, though not under the care of any medical professional.

I thought I had “beat” my illness.

Allow me to pause here and acknowledge that the stigma of mental illness is still very real and present in modern society.

Recent years have seen an uptick in awareness and acceptance of them within certain communities.

But, awash in free society is the notion that mental disorders are atypical, foreign, tandem with odd behaviors, and generally inconvenient.

And, despite our self confidence that we are not influenced by societal beliefs, the reality is they play a part in our decision making whether we like it or not.

Back to my story.

I was in my early twenties, living with my sister, and working as a caregiver for children and adults with disabilities.

My clients ranged from “developmental disorder” to autism to PTSD to ADHD and so on.

I loved my clients and tried my best to give them each what they needed in me: a companion, a taskmaster, a teacher, etc, and tried harder not to get attached to them (spoiler: I failed).

My job was challenging and sometimes heartbreaking, but I loved it and cherished being able to help my clients for as long as I could.

About eight months into this job, my depression started to eat at me again.

No doubt the combined stress of my job and being an empathetic person by nature was contributing.

Around my 25th birthday my hair started falling out.

Within a month I was bald, and this sent me into another downward spiral, thinking my value was in something as superficial as my appearance.

Funny how life’s earlier events seem to have been pieces to a bigger puzzle I couldn’t see at the time.

This cycle of being pretty functional, then experiencing an event I couldn’t cope with, leading into several months of hopelessness, slowly climbing out of it, functioning, then crashing down again happened many times over my young adult life.

I still didn’t believe that I was really ill, and in need of professional care, as well as self care (like eating well, sleeping normally, journaling my thoughts).

It wasn’t until just before my 40th birthday that I sought medical treatment for my ongoing depression, finally acknowledging that it wasn’t going away by itself, or with time, or with my willpower.

Now let me draw a parallel, that these statements are true of our dear ones’ conditions as well: the disabilities won’t going away by themselves.

Our kids won’t “grow out of it” as some might suggest. And all the love and desire we as loving caregivers have for them won’t make them wake up neurotypical one day.

But in the end, none of that really matters, does it?

What society at large thinks about our special needs fellows doesn’t matter either.

We are who we are, and we’re not who we’re not.

We can suffer, we can have pain, we can not succeed in certain measures, we can be seen as atypical, odd, and inconvenient.

We live our lives, and love the ones we care for, fragile that we both are. That is what matters.

So, can a depressed caregiver really care? Resoundingly, loudly, I assert yes.

She may not be able to keep all her emotions about caregiving to herself, she might cry more, or need more verbal assurance, or to have things repeated (often).

But does she care about who she’s caring for? Absolutely.

(Note: I’m now under the care of a good physician, whose approach to my mental health is holistic and measured; he urges me often to go easy on myself, do a little at a time, take breaks, adhere to schedules as best I can, and not get too wrapped up in always performing a certain way. I think this is good advice for all caregivers, too.)

Special needs parenting: No Easy Choices

It’s been approximately one year and one month since two of my kids stepped foot in a classroom.

When schools closed and transitioned to virtual learning last Spring, like everyone else I thought it was temporary.

Then two weeks turned into two months, and they finished out the year online.

When school started last August, most schools in our area opted to go in person- either a full five days or a hybrid schedule with all precautions in place.

We live in a rural area in Northern California that hasn’t felt the impact of COVID-19 as much as the bigger cities like San Francisco and Los Angeles.

While we opted to send two of our boys back to in-person classes, we decided not to send our son and daughter with special needs.

They both have a higher risk of complications should they catch the virus, and the schools’ quarantine policies made it uncertain that even if they did go back, they’d be back for long.

Even if they weren’t so high risk, the guaranteed inconsistency would do them more harm than good, since they thrive on routine and structure.

This past year we’ve had them both on independent study, where they complete weekly work packets and have speech therapy and DHH (deaf and hard of hearing) services online.

I’ve learned a lot about myself and my kids, their learning styles, what their strengths and weaknesses are, and forced myself to think outside the box on many occasions.

When they first started with learning at home, I tried to replicate a school setting- a specific place for them to do their work and a set schedule for them to work through each day. That went out the window by week two.

I found out through trial and error that my son works best with little chunks of work at a time, with active breaks in between.

I also learned that he’s a very hands- on, tactile learner.

He’s spent hours trying to recreate things after learning about them.

This past week it was a spaceship built out of a cardboard box after reading about astronauts.

My daughter on the other hand will work through an entire packet in one sitting, but not when she’s told to work on it.

After hours of reminders, nagging, and even bribing one day I had just about given up on her getting any work done that day when she decided at 7 p.m. that she was ready to do it.

It took her two hours- beyond the time when she should have been getting ready for bed, but I learned a lesson that day in picking my battles.

With this school year coming to a close, I have no idea what’s in store for next year.

I’ve been waffling back and forth between sending them back when I feel like it’s safe and keeping them home indefinitely because they’ve been thriving with learning at home.

The one thing I do know is that whatever choice I make won’t be easy.

Special needs parenting: “The number”

Let’s rewind back 7 years just for a moment..

I’m 32 weeks pregnant, my husband and I have spent the last few weeks processing everything we have seen, and heard regarding our unborn baby.

Throughout all the medical terminology I couldn’t even pronounce, let alone understand, it was one Consultant who left a scar in my memory.

This particular consultant told me that IF my son would survive birth, and IF he lived past a few years, he would probably live until he was 7 years old. 

I mean how can someone predict this?

Of course, back then I hoovered up every last word they said, I knew I would continue with the pregnancy, and fight for my boy, but these words also crumbled me into the biggest pile of fear I have ever experienced.  

Giving a parent a number, in my opinion is the worst thing you can do when talking about their diagnosis.

It creates fear and it can really impact a parent’s mental health.

Giving a number can affect really happy times too, it’s like a great big cloud hovers over you, very quickly changing the mood.

I can be smiling and laughing, enjoying a precious moment with my son, then have an overwhelming need to cry, these tears then blur that moment.

It’s like a ‘too good to be true’ moment, you’re scared to be happy.

Special moments such as birthdays. I struggle with them every year, and now dread this upcoming one more than any other.

It’s all down to being given the number 7.

I understand some of you reading this may want to tell me it’s just a number, and I hear you on this and I completely agree.

Reality is however, when your mental health has been bashed repeatedly for the past 7 years, and your emotions are too complex to understand, you lose all rational thinking, at times, leaving you trapped inside your memory, reliving the conversation that has haunted you for many years. 

The impact from a conversation is huge, and I know there are so many other families who were given a number too. 

Is it time to change how these conversations are done?

It’s only after many years of battling through as an advocate for my son that I can now see that numbers are just numbers, and there are so many specialists and pieces of equipment that can help a child.

However, back there in that room, scared for my unborn baby, I was fragile, overwhelmed and had no clue at all around disability.

Because of this, I held onto something I could never let go of. It’s tattooed. So, all my rational thinking, experience and knowledge becomes irrelevant when I’m struggling emotionally and mentally. 

This is the thing with our mental well health, it doesn’t matter how much we’ve researched, how much hope we have, or even how happy we are, it can be impacted at any time, by anything, from anyone.

It can strike, and bring you so low that nothing anyone can say can bring you back up.

I often describe these times like being on a boat, I have to sail through the motion, and pick myself up when back at shore. 

I would love to know how different my emotional and mental wellbeing would be if I wasn’t given a number.

It’s impossible now, but is it time to change how diagnosis conversations are led? For me, it’s too late.

However, if I can share just one piece of advice around this, it is to be kind, and true to yourself.

Talk openly about it, as denial or pushing things backwards can be so detrimental to our health.

Be proud of who you are and your family. 

Much love,


Special needs parenting: Family walks

I am so thankful that our teenage girls still want to go on walks with us as a family at the weekends.

To be honest, I’m kind of dreading the day when they feel too old or too busy to tag along in our accessible van as a family of 6.

We’ve just always gone on day trips or vacations as a family and I don’t want it to end (though of course it will at some point).

On this particular sunny Saturday, we’d packed everyone up early, along with a picnic, complete with a flask of milky tea and Brielle’s Peg-feed for lunch.

We managed to bribe the girls out of the house before 9am by arranging to stop on the way for a drive-thru McD’s breakfast (sausage McMuffins and hash browns) so made our 45 minute drive along beautiful coastline to the forest we wanted to walk in quite early.

In this picture Brielle is walking handheld with her Daddy, I’m taking the picture of the girls and Ian and pushing the stroller.

It was a gorgeous family walk around the forest park, almost idyllic until Brielle had a meltdown about getting back into her stroller, but she was too exhausted to walk any further.

The special needs stroller we got 2 years ago is a game-changer.

I remember pushing her wheelchair up and around these same dirt path trails (NOT fun at all!).

We took the plunge and bought a pink and black Delta Buggy- a three-wheeled all terrain special needs buggy that should fit Brielle until she’s in late teens at least.  

It’s really enabled a lot more off-road trails and walks, and we use it daily for long walks from our house too, especially with all the lockdowns and being at home so much.

We’ve made a point to walk loads and Brielle just loves being out and about!

If you are thinking of purchasing a special needs buggy (I’m American by birth so you’ll see we always call it her “stroller”), you may be entitled to a grant to help purchase one as they are very expensive!

Brielle’s social worker secured a grant for £500 towards it, and we paid for the rest.

SUCH a worthwhile investment though and we are so glad we have it, and thankful for quality time with all our girls

My Dearest Father

You and mommy made the decision to add a new little life to your family.

You stood by her side as she waited for those two little lines to appear.

Within her body, magic took place.

Life began for me.

You stood by her side at each appointment.

Through a black and white screen, you watched me grow.

You grew with excitement, knowing you would find out soon.

Boy? Girl? You said you did not care.

But along with finding out you would have a son, you found out other things too.

You heard the words, “Neural tube defect. High chances. Specialist doctors.”.

Life grew confusing and worrisome.

But from within, I still continued to grow.

My heart was strong, even if other parts of me were not.

Spina bifida.

That was my diagnosis.

But daddy, you did not let it define me.

You did not let it change your love for me.

You stood by mommy’s side and said we could get through this.

You felt my first kicks.

Mommy complained of my constant hiccups.

Life, continued.

Continued to grow.

You barely made it in time to welcome me to the world, 10 weeks early.

Surprise daddy!

You both named me Oliver.

Three pounds in weight, seventeen inches in length.

Small but mighty.

45 days in the NICU, but you saw me every day that you could.

You continued to watch me grow.

I am strong daddy.

Strong like you.

When it was time to come home, you were scared.

But guess what daddy?

I am seven now, and we did it!

You let me kick your butt in video games.

You cheer me on when I play baseball.

You encourage me to never stop chasing my dreams.

Wrestler? Body builder? Policeman?

You believe in me to do it all.

You are my hero.

From day one, you stood by my side.

You helped make me the courageous, brave, and loving boy that I am today.

One day, I will be a daddy like you.

And I will remember all the things you did for me.

I will love, like you loved me.

But today is a day that I want to give thanks.

Thank you Daddy.

Happy Father’s Day.

Celebrating the best Daddy you could have

Father’s day is coming up fast and I’m super proud of myself because this year I had the gift sorted early.

We got my hubby a BBQ tool set engraved with wee messages from me and the triplets.

It actually arrived as we were having a BBQ so Daddy got his pressie early since the kids were so excited!

The problem is, I’ll never find a gift that could actually reflect the Daddy Ryan is to our kids.

We wanted a baby for years and did three cycles of ICSI before falling pregnant with the triplets.

One of them has spina bifida, hydrocephalus, epilepsy and learning disabilities. While I was used to disabilities as someone with Multiple Sclerosis (MS) and a learning disability nurse, Ryan was thrown into this world of special needs in a very “sink or swim” way!

I really couldn’t be more proud of how he’s risen to the challenge and learnt all about Jacob’s various conditions.

Having MS has also meant that Ryan ends up doing more than his fair share of the “work” involved with having triplets.

He gets up everyday without complaining so that he can carry Jacob downstairs for me since I don’t feel safe doing this anymore now he’s six and much heavier.

There are days I find it very difficult to get up due to extreme fatigue and tight muscles causing pain, so Ryan will help the kids while I sleep on for a while.

Again, he never complains.

I also get waves of fatigue during the day and sometimes despite trying really hard, I have to just give in and rest.

He never questions this and actually encourages me to go and do what I need to feel better.

The triplets look up to him so much as well.

He’s their hero and they genuinely couldn’t love him anymore.

Jacob loves that he sometimes gets “Daddy back rides” as he calls them in our back carrier.

Daddy can also push his wheelchair up the big hills or over bumpy ground etc which Jacob also completely adores since it’s opened the world up to him to explore.

What a better gift to give our special little guy.

Chloe loves that Daddy makes her laugh constantly and helps her feel safe when she’s in any situation that makes her feel uncomfortable.

As a shy and nervous child, she will literally use him as a “shield” if she wants to hide away a bit from whatever is happening.

He is literally her protector! I always smile when I watch them together.

Our other son, Ben, just thinks his Daddy hung the moon. He idolises him so much and gets really upset if he feels Ryan is cross with him at all.

They both share an interest in superhero films etc and it’s just lovely watching them together.

I don’t understand half of what they talk about, but it’s brilliant that they have a shared love of so many things.

There will never be the words to explain or a gift to show Ryan what an amazing Daddy he is to our kids, but I truly hope he knows how much I respect and love him for it.

We were married ten years on the 28th May and I honestly couldn’t wish for a better man to share this crazy adventure with.

Special needs parenting: Finding support

When we first started our journey and Ethan was diagnosed, we headed up to a special appointment which was filled with all different specialists.

They all had previous knowledge of his genetic disorder and we were told that they would be able to share their knowledge with us and give us more of an insight into his disorder.

We were so excited because we had no idea about this rare genetic disorder.

We didn’t know what the future held, how Ethan would be able to progress with it or how long we would even have Ethan with us.

There is little to no research available online so all we were going with was a piece of paper with lots of coding on it.

After a mission to get to the hospital after severe flooding we made it and entered the room full of at least 15 specialists.

All in a big circle staring at us.

The meeting began with us introducing Ethan.

Then they proceeded to tell us about his condition, only there wasn’t much for them to tell us.

We were met with a room full of silent faces.

They told us there were a few cases of children being diagnosed with his disorder but there wasn’t much they could tell us as they had either passed away or they hadn’t met them.

They told us that Ethan did present with all the symptoms of someone with ARX and that if we could keep him well that would give him more of a future.

That was it. No other advice, no thoughts on developing, no thoughts on the future, nothing.

Going into that meeting as a new parent who was being opened to a world of disability and a rare genetic disorder I was relying on the professionals to help us and they didn’t.

I didn’t know what questions I should ask or what we should be pushing for for our son.

Since that day I have learnt that you need to speak up, you need to constantly ask questions about everything, do your own research over tiny things and ways you can help your child. I have learnt so much from other parents and that is how I know what we know today.

There is so many twists and turns on this journey.

Having other parents there to help us and tell us things the professionals don’t tell us is so incredibly important.

I often get thanked by new parents when I’ve told them they are eligible for something or they can access something they didn’t know about, but the truth is, if another parent hadn’t told me I wouldn’t know either.

I think it’s so important that we help each other out.

There’s no point keeping tips tips information to ourselves.

Sharing the love not only helps our families but other families as well.

None of us will ever walk the same walk but all our paths will cross and its important to help and support each other out.

“Play is the highest form of Research” Albert Einstein

There are many individuals who have different levels of comfort with children of different ages and differing abilities. 

Parents love their child, they enjoy being around them, but don’t really know where to begin to engage them. 

There is no ‘cookie-cutter recipe’ that can tell you how to play with your child, but the stages of play are ubiquitous for child development.

UDL- Universal Design for Learning is the concept that toys, clothes, shoes… are designed with accessibility in mind.Choose toys that can be used forL

1- Sensory exploration- Sensorimotor development is one of the first areas of the brain to develop for newborns.  The more a  child feels, the more they move.  The more they move, the more they learn.

The first stage of play is to feel, handle, explore and sometimes mouth toys. The baby will eventually push, bang, roll, and/or throw  toys.Babies explore toys through their hands and mouths

2- Discovery of cause and effect-First I do this…. Then……

A child learns that their actions result in an outcome.  For example, a pop up toy that is activated when they push a button. 

The child develops the feedforward/feedback system and can anticipate that when they do something specific, a specific action occurs. 

On the most basic level, this teaches a child that they can have an impact on their environment .

3- Imagination and creativity- the next level of play involves discovering new ways to use a toy.  This creativity is the result of participating in activities of daily living, interacting with their peers and family members, and exploring their environment. Little ones will begin matching, sorting and creating new fun ways to use toys, their bodies and their voices. 

4.  Transfer these skills to another setting, and build on them.  A sign of learning a new skills is when a child can master a skill, take what they’ve learned in one setting, and generalize it to a different setting. 

Then the toddler modifies, adjusts and refines their decision making based on their many experiences (trial and error) .

Play is the best way to learn. 

Play can stimulate hand eye coordination, vision, motor, sensory, proprioceptive sense and more. 

Every child can explore toys, it’s up to us to set up their environment in order for them to have easy access to these toys!