In our family, “I love you” is not always uttered in spoken words.

For a long time, coming to terms that with that fact was difficult for me.

In my unrelenting quest to give my nonverbal child a voice, I recently stumbled upon the most interesting notion.  While watching one of several webinars on Augmentative and Alternative Communication (AAC), a concept called “love language” was discussed.  As I have painstakingly researched and evaluated many different AAC methods for my nine-year-old daughter, trying to find the one best suited for her, it never dawned on me that she already has quite an extensive vocabulary.  Although her words are not expressed verbally, she communicates with me, her Dad, and her brother through her very own unique language.  In our family, we have clear and powerful conversations without words; the four of us share a love language that we can easily interpret.

My daughter tells us so much with her expressive eyes.  She conveys excitement, happiness, and even annoyance with a simple look.  Her face is telling, and we have learned to read it for clues as to how she feels.

When I wake her in the mornings, I always brush the hair out of her face.  As I whisper, “Good morning, Love”, she grins sweetly, takes my hand, and holds it tight.  I know that must be her way of greeting me with a “Good morning, Mama.”

Sitting with her Daddy, she studies his face carefully while babbling various sounds with inflection. The only discernible utterance is “Hey DaDa”, which she will lovingly repeat to him, over and over.  She always reaches up and gently touches his face with her little hand.  I never grow tired of witnessing that beautiful display of love.

There are many other ways she “tells” us, besides using her AAC app or picture board.

Climbing onto the sofa and tapping the front cover of a book lets me know that she’s ready for me to read to her.

Playfully drumming on her iPad while looking at her brother, she knows he will stop whatever he is doing, time and time again, to press play for her next episode of “Sarah and Duck.”

Deliberately shaking her head for “NO!” speaks volumes.

Crawling over to look out the glass door, knocking on it steadily, she exclaims that it’s time to go outside…NOW!

Applauding when we tell her “Good job” proclaims that she is super proud of herself.

Crawling over to me and grabbing both of my hands lets me know that she’s ready to play.  She’ll instinctively bring my hands together in a clapping motion.  She loves to clap and enjoys having someone to clap along with her.  She watches my hands attentively, to ensure that I perform in the manner that she prefers.  If my clap routine varies one bit, she will emphatically take my hands and “show me” how to do it correctly!

We will fervently continue our AAC journey.  Identifying the best means of effective communication for my daughter is a crucial goal.  Likely, it will be a combination of multiple AAC methods.  In the meantime, I will appreciate the love language that she is already fluent in.  “I love you” is not a phrase that must fall upon our ears to be loudly heard.  Through nonverbal gestures, it can be felt in the most magical ways.

I am often told how good of an advocate I am for my children. I spend hours on the phone finding the best possible care and best doctors. I do not give up until I have the best care for Sawyer. I know this is true and it is in my nature.

I am also an English-speaking white person. I have experienced no racism and I have no language barrier that is stopping me from connecting to the doctors and case managers.

In my small experience and upon speaking to therapists there tends to be a very big disconnect between families that speak English and those that don’t. I do believe that it is more than a language barrier but a lot of it is the language barrier. If you do not know the right questions to ask you often aren’t offered the services that are available to you. I don’t want to place blame on social workers or case managers. There are many, many out there that are wonderful.

I have personally had some wonderful case managers, but my friend has had opposite experiences.

She is Latino and English is not her first language. She has two daughters with special needs; including feeding tubes, cerebral palsy and had no help. When we first began talking she explained that her husband was working 16 hour days in order to keep up. She was unable to work because there were no daycares that would take two children with special needs and feeding tubes. She also could not hire a nanny because it was too expensive. They were in a very small home that was not adequate, but they could not afford a bigger home. This left her and her husband working around the clock and their family was suffering.

When we began to talk about it, I mentioned that there are county services that would give her the help that she needs. She would be able to get nursing help as well as some income support so her husband would not have to work so much. She said she had heard she may be able to get some help but when she called them, they told her she needed an interpreter. She said they didn’t seem to understand that she could speak English but needed things explained a couple times so she could fully comprehend. She explained they told her an interpreter was hard to get and took a while. She felt defeated and gave up.

This INFURIATED me.

I understand that case workers and county workers are busy. I understand that they have a lot on their plates but why not take the time to explain and empathize instead of brushing off? Why wouldn’t you listen and try to understand? This family was exhausted, stressed and feeling defeated and yet, they couldn’t get help. It was at that point that I reached out to my case worker. She is a wonderful person that truly loves what she does. She works hard to understand and spend time getting to know her families. She was able to give me the exact language and questions for my friend to ask.

Once she had the knowledge in her hands, she was able to facilitate the help and assessments she needed. She now has nursing care, was able to move to a bigger home and her husband is home more to spend time with his girls.

This situation is not outside the norm.

I suspect that this happens quite often and many children with special needs are unable to receive the care they need because of a language barrier or even a racial bias. The reason I am sharing this with all of the wonderful people who are reading this is because I am hoping it create awareness and change. If you know another parent of a child with special needs, reach out, help them, see if they need help navigating this tough and unique world. We are all in this together.

It’s strange how times of darkness can shed light on so many things. I’ve seen my share of ignorance and ableism in the last thirteen years of being a parent to children with multiple disabilities, but I have to say it’s unreal the number of people that have been showing their true colors since COVID-19 came on the scene.

I’ve never unfollowed or blocked so many people on social media as I have in the last four months. In a way, this pandemic has been a blessing because I’ve been able to weed out the people that have made it evident that they think people with chronic medical conditions are somehow expendable.

Almost every day, there is at least one person in my newsfeed commenting on a recent COVID-19 related death with something along the lines of “Well, they were older/ had (fill in the blank condition).” Because somehow that makes it “ok” for them. It validates their narrative, which is that they have nothing to worry about because they are not old or sickly.

I’ve been hearing the same thing for months. “It’s only the elderly and people with underlying conditions that have to worry.”

It’s only them.

It’s only people like my children. Like my son with chronic lung disease, who has ended up in intensive care after catching “a simple cold.” Like my daughter, who has intellectual and developmental disabilities, two diagnoses that have both been documented not to fare well with COVID-19. It’s only someone’s elderly or chronically ill loved one.

I’m not sure people realize how much weight the words “It’s only” have, or if they ever will understand unless they have a loved one that falls within that criteria.

Somehow, justifying the horrific outcome that COVID-19 could have on some of our most vulnerable population has become acceptable.

People with disabilities have routinely been marginalized and even thought of as disposable by some, but suddenly, it’s become clear just how many people believe that the medically fragile are somehow acceptable collateral damage in this pandemic. It’s depressing and sad, and it’s yet another reminder that we need to fight even harder for our kids.

When people say, “Only the vulnerable will be at risk,” I wish they would realize that for parents like us, their “only” is our “everything.”

I wished I had started yoga with my daughter sooner.

Her first introduction to yoga was at a family weekend for children with visual impairments and complex needs.

She had a 10 min taster session 1 on 1 and was SO calm and receptive! I knew we had to continue this… She was 8 years old at the time, it was September- the beginning of the school year.

Since then, Brielle’s been lucky to have some longer 1 on 1 sessions with an amazing Yogi called Tory. She runs Shine: Special Yoga Therapy out of a studio in Belfast. She also visits local schools, day centres and individual homes for specialised yoga sessions. She has a wealth of knowledge of yoga and special needs and requirements, and tailors the sessions so beautifully to each individual.

Brielle has responded best at home in our living room, on the purple mats. I think she was a bit distracted in the big studio and felt more at ease and relaxed in her own environment.

I bought her a one-piece zip up swimsuit with shorts as her “yoga outfit”. She can wear over her pull-up and mini-button and keeps her clothes from riding up – keeps her decent and comfortable!

Unfortunately, since coronavirus struck, we’ve been unable to continue the hands-on sessions with Tory at the minute.

So, her older sisters and I have continued with her yoga practice as best as we can. YouTube is great for inspiration!

Yesterday we set up some practice on the picnic blanket in the back garden.

A lovely relaxing time in the sunshine. Lovely for Brielle to work on her breathing, posture, flexibility, core stability and also communication with her sister and I.

I would really encourage those of you who haven’t tried yoga yourself or with your little one to try it out! Special yoga focuses on breathing, physical postures and stretches, deep pressure massage, mindfulness and relaxation.

It has so much potential to help your child balance their body and mind, improve concentration, develop motor skills, improve their posture and muscle tone, reduce anxiety and improve their sleep amongst other benefits. Give it a go today!

Day after day she sees her sister wearing AFOS on her feet, she sees her standing in a standing frame, sitting in a supportive chair, walking with a walker, having to be physically moved from room to room and so on. She has attended numerous of her sister’s physiotherapy, conductive education and hospital appointments.

She has seen these things since the day she was born. She knows no different.

She accepts everything about her sister, looks up to her sister and wants to do everything her sister does. She is her sister’s greatest admirer.

She climbs in her sister’s equipment and tries to put the AFOS on her own feet.

She, already, at 1 years of age, watches everything we do to help her sister. She wants to share food with her and hold her cup to help her to have a drink. She tries to help buckle her sister into her equipment. She joins in with therapy. She takes it upon herself to walk up behind her sister in her walker, her Scooot and her standing frame and help her to move around the house and from one side of the garden to the other side.

She is too young to understand her sister is disabled or understand why our house is full of the equipment that her sister is entirely dependent upon, but by the time she is old enough to understand, it will not matter. She has already built up a perception of her sister and understanding the disability her sister has will not change that.

She will be her sister’s loudest cheerleader, the one that always makes her sister smile and laugh, the one that will always be right by her sister’s side, the encouragement to keep her sister pushing through and the one that picks her sister up when she falls down.

Yes, she has joined a family who has to spend a great deal of time doing therapy but also a family who will teach her what unconditional love and acceptance are, how to be compassionate and how to have a strong heart.

She will be the reminder for us to take a break from therapy, to have fun, to go out together and explore the world and make memories together as a family.

She was the final piece of our puzzle and our family is now complete.

She is Isla.

Eleven years. That’s how long our potty-training journey has been.

It started when our daughter Lilly was about two and a half. She had recently been diagnosed with autism and intellectual disability, and she also has multiple medical issues stemming from a rare genetic condition. We knew it would be a rough road, but we never anticipated precisely how long and how bumpy that road would be.

She resisted with every fiber of her being when we tried to persuade her to use the toilet. We bought a little step stool, and later a cute little princess potty. She wasn’t having any of it.

It took years before she was even able to communicate that she had gone in her diaper, and even that wasn’t consistent.

We had the same issues with our son, Chance. He also has the same rare condition that Lilly has. Although he doesn’t share her diagnosis of autism or intellectual disability, he has plenty of developmental challenges of his own. We bought him a little frog potty chair when he was about four years old because he had expressed a little interest in using the toilet, but he was so tiny it was hard to get himself situated on it, even with step-stool and a toilet insert.

Even though the frog potty never got used for the purpose for which it was intended, it was well-loved. He loved putting small toys in it and carrying it around the house. I even found him taking a nap in his toddler bed with it one day. Each time we attempted to potty train, it ended up backfiring, and we felt defeated. We would drop it for a few months and then begin again.

I knew they were both capable of toilet training; I found out from their teachers a couple of years ago that they were occasionally sitting and going in the toilets at school…so it was frustrating and baffling to us that they had no interest in doing it at home no matter what we tried.

Fast forward to late last year, right around Thanksgiving. Chance started requesting to wear underwear. We told him that he needed to show us that he could go in the toilet every time he needed to go to the bathroom.

“Even poop?” he asked.

“Yes. Especially poop!”

It took a few days of trying and a promise of brand-new underwear with the character of his choosing, but he finally did it.

In January, we moved to a new house, and Lilly regressed a little bit. We had finally gotten to a place where she would go pee in the toilet, but she started going in her diaper again and not even telling us when she had gone. We figured it was back to square one.

About a month after the schools closed due to COVID-19 precautions, something shifted. One day she just decided to put on a pair of the new underwear (from a previous potty-training attempt) that has been sitting in her dresser for months, and she has been diaper-free ever since.

We still have to clean up the occasional accident. They both still need to be continuously reminded about good hygiene practices and prompted to clean themselves thoroughly, but overall, it has been fantastic to see them hit this milestone.

I know some may think this is oversharing, especially given their ages (Lilly is almost 14 and Chance is 9). I usually don’t write or post too much about sensitive issues like this regarding my kids’ disabilities, but I think it serves as an important reminder that our kids will hit some milestones in their own time, on their own terms, when they are good and ready. Never lose hope!

“This is definitely epilepsy. We need to start him on anti-epileptics immediately.” I still vividly remember sitting in the neurologist’s office hearing that one of our amazing triplets, Jacob, had epilepsy.

We knew this was a risk because he was born with the most severe form of spina bifida, myelomeningocele. This meant that his spine didn’t close fully during the first six weeks of development in utero, exposing his spinal cord to damage. He went on to develop hydrocephalus (“water on the brain”) after his back closure when he was just six weeks old, so had to have a special tube inserted to drain extra fluid that was compressing his brain.

I learnt that being a risk and being a reality are two very different things. As a trained nurse, I had a job that involved being “epilepsy link nurse” before having the kids so I thought I knew enough about it. I was so wrong.

The first thing to hit us was the frequency of his seizures. He’d have numerous every day, simply “checking out” for minutes at a time. He’d stare and become unresponsive (or very sluggish at least) to our pleading voices and touch. Watching a seizure taking hold of your child’s body and brain is a desperately helpless feeling. Afterwards he’d just sleep. It became a cycle of awake, seizures, sleep, seizures.

We were watching him constantly, always ready for the big ones that didn’t even respond to two doses of his “rescue meds”. His meds also took their toll on his beautiful body, causing a horrific widespread rash that caused him even more discomfort.

I became incredibly anxious. I can’t remember him having a full week at pre-school after his diagnosis and that didn’t change in the first term of primary one. I couldn’t leave him anywhere except school, and even then, I had to be close by so I could take him home or hospital if he just didn’t “come back” to me. He couldn’t travel because being in the car seemed to trigger his seizures, so I didn’t feel it was safe or fair to drive him further than absolutely necessary.

It really was one of the toughest times of our lives.

Thankfully, he has since got better seizure control after a lot of “tweaking” and changing his meds. We watched with absolute joy as our bright, bubbly, funny and courageous little boy came back to us day by day. His strength is still building up again after over a year of being unable to do his physio or occupational therapy.

He is incredibly lucky to have a brother and sister by his side cheering him on. They have also been so brave through it all and never complained that Mummy and Daddy spent so much time with Jacob. We wouldn’t have got through without the support of our family and friends who held us up when the constant worry became too much.

It’s still a big part of our lives but we now feel like we can move forwards and out of the crushing weight of feeling all we are doing is managing each crisis!

It’s often believed that the early years of a child’s life are the most difficult.  Sleepless nights, toileting challenges or lack of communication can all add to the pressures.

Yet many of the special needs parents I speak to reflect that not only do many of these issues continue in their lives, but new challenges emerge as their child grows and develops.

Transitions such as puberty, secondary school, moving to adult services all bring periods of adjustment.  Society is less forgiving of an adult who displays behaviours that challenge in the supermarket than a child. The looks are more noticeable.

Even hard-won services feel precarious and we may have to continuously fight just to keep the status quo, such as at Annual Reviews for Education Health and Care Plans.  The fight goes on in perpetuity.

I am reminded of the Myth of Sisyphus.

In the Greek legend Sisyphus is condemned by the gods for eternity to repeatedly roll a boulder up to the top of a hill only for it to roll down again. It’s a metaphor for the individual’s struggle against life but it feels particularly pertinent for parent carers.

I felt like this recently when proposals were made to dramatically reduce my son’s therapies despite fighting for the provision last year.  All that fight and effort and here we are again.

So, what can we do?

As time has passed, I definitely feel more able to advocate for my son and my knowledge of our rights and the law have increased. I also realise that sometimes we need to let a battle go in order to win a war. I’ve learnt to pace myself so that I don’t burnout.

I’ve found that I can let others push the boulder up the hill with me, or for me, sometimes.  To rest at the bottom when necessary – the struggle can always wait a day or two. Also, to enjoy the view at the top for a while even knowing that it may be short lived.

So, we, as parent carers, continue to learn and develop.  Our landscape may stay the same but our capacity to cope grows.