Mastering Goals, in Her Own Time

From the moment I received my daughter’s rare genetic disorder diagnosis, I wondered if she would ever know her family.

Would she recognize us? Would she understand how deeply she was loved by us?

At age 11, watching her identify her family members on her communication device, I am confident that I have my answer.

Ryleigh absolutely knows her family and she deeply understands the concept of love.

I watch her touch the photo of her Daddy when I ask her, “Where is Daddy?” It’s obvious that he’s her #1 favorite, as a bright smile stretches across her face as she responds to my question.

It amazes me every single time. She can also point out a photo of me and one of her big brother, when asked to.

This feat may not mean a great deal to most, but to us, it is COLOSSAL. She has mastered a goal that we once feared to be far out of reach.

One year ago, we were striving to help her greet others by waving for “hello” and “goodbye.”

A skill that babies learn very early on was a challenging goal that required much motor planning and coordination for our girl.

We practiced with a photocopy of her own hand; a symbol that she could hold up in her therapy sessions to greet her Speech Therapist.

One morning, after many tedious months of practice and repetition, my heart melted into a puddle at what I witnessed.

As we had done countless times before, my husband and I took turns exclaiming, “Hey Ryleigh!” We waited, giving a patient pause.

Suddenly, she raised her little hand and purposefully and methodically moved her tiny fingers up and down.

She was waving to say “Hello” to us! It was a completely magical and beautiful sight. Without any words, she told us so much with this most meaningful gesture.

As a parent of a child with physical and intellectual disabilities, I still have BIG dreams for her. No diagnosis could ever change that.

Our goals and dreams simply look different than those held by other parents. There are goals that we’ve diligently worked towards for many years; they’ll likely take many more years to master.

Progress comes slowly, but steadily.

In her own time. Watching her walk independently someday, without a walker or her orthotics, is a lofty aspiration.

I see it vividly in my dreams. I fiercely hold onto hope that it will eventually happen.

One of my most favorite quotes is, “Believe in your child so much that the world thinks you’re crazy. Then, believe more.” I’ll keep that as my mantra and celebrate every inch forward, as she continues to astonish us.

If I had one wish

“The most important thing in communication is hearing what isn’t said.”

As a mother to a nonverbal child with multiple disabilities and complex medical needs, this quote resonates with me.

Tremendously. Sometimes, I misread those unspoken messages.

As hard as I try to translate nonverbal cues, I often fail to interpret the signals correctly. If I had one wish, it would be for my daughter to have the ability to speak.

Not only to hear “I love you, Mommy” in a soft, sweet, angelic voice…

Not only to hear every detail of her day at school, instead of reading about it on paper and trying to fill in the gaps…

Not only to hear if someone was unkind to her…

When my beautiful, 11-year-old daughter is sick or in pain, time and time again, I desperately wish for her to be granted the gift of speech.

It’s in these times when I long to hear her voice the most. If she had the power to express what she feels with spoken words, I could save valuable time spent guessing and investigating…I would know with certainty, and I could FIX it.

We are working diligently on teaching her how to communicate with an Augmentative and Alternative Communication device.

She has made valiant strides, but this intricate artform is a work in progress.

Of all the things she’s beautifully learning to “say” with her device and also with pictures and gestures, “hurt” is a concept that is exceedingly challenging for her to convey.

She was sick recently with a stomach bug, that in turn irritated her stomach and throat, finally settling as ear infection.

She rarely cries. She never stops playing to lay her head down and rest.

When this does happen, or when she spikes a fever and has a febrile seizure with no obvious cause, we know SOMETHING is wrong.

During sleep, if her heartrate is high, we know SOMETHING is wrong. Her Daddy and I quickly transform into sleuths.

We explore every possible scenario that could be occurring. We carefully consider and investigate every conceivable origin, from head to toe. It breaks our hearts when she can’t tell us what hurts.

All the while, we try with all our might to hear her words that are not spoken.

Countless times, bloodwork and other invasive tests have had to be performed to diagnose a problem; to narrow down and eliminate potential culprits.

She’s endured numerous painful spinal taps, urinary catheterizations, and needle sticks over the years.

I try to never throw the word “unfair” around carelessly, but this IS unfair to her; it shouldn’t have to be this way.

I NEVER feel sorry about our situation but watching her suffer without the ability to express it verbally absolutely renders me helpless.

I will always wish for this one, solitary, precious gift.

While she is unable to relate her feelings with spoken words, I will continue to carefully listen with each and every one of my senses.

I will work tirelessly to help her find her voice. She has so much to say.

Happy Birthday? Why Getting Birthdays Right Matters!

June is the month where three generations of Arnold’s celebrate their birthdays; James, me and my Dad.

Chronologically, and just by a few hours, the first is James’ birthday.

Although things are gradually getting back to some sense of post-pandemic normality for many, due to James additional needs this is the third birthday that we’ve not been able to celebrate with him as we would have liked. But that didn’t mean that we had to abandon James’ birthday celebrations, we just had to adapt them, and we found that they worked much better!

It was going to be difficult to invite family and friends around for the big day, but we could arrange to chat with them virtually.

It wasn’t possible for James to see many people arriving with cards and packages for him, so we asked people to send cards and packages through the post instead.

Word spread, and by the time of his birthday, 75 cards had arrived as well as a stack of parcels.

More arrived over the subsequent couple of days, the postman was curious to know what was going on and why James was so popular!

We couldn’t easily go out somewhere for a meal, so we had a special birthday meal delivered to us! And there was cake, of course!

So it was a different birthday, an alternative birthday, but James had a brilliant time.

He didn’t have to battle through the social anxiety and exhaustion of loads of people arriving at home, he didn’t have to cope with the sensory overload of visiting somewhere for a meal, there was no queueing or waiting, he could stay in his safe space at home and have his birthday come to him… and he loved it!

It took ages to open, look at, and line up all of the cards.

People knew that James loves Minions, and Winnie the Pooh, and Star Wars, and animals, so the cards reflected this. Some lit up, some made sounds, some were handmade, they were all very much appreciated.

It took ages to eat the meal that arrived, James’ favourite Chinese food, and it was a struggle to find room for the cake afterwards, but we bravely managed to squeeze a piece in! There was no rush, no one hovering to say that they were waiting for the table, it was all very relaxed.

As you can see from the header photo, James had a fabulous birthday, and he taught us a valuable lesson… Birthdays are important days to celebrate, but in doing so we should make sure that the celebration reflects the needs of the individual, and those needs might be different to what everyone else expects or even wants.

Pandemic birthdays have been the perfect birthdays for James and so next year, assuming that the world is a safer place by then, we might just have a special one-day lockdown again and celebrate in a more relaxed way.

Happy birthday, James!

A break away, or near breaking point?

Holidays are fab, right?

Time away from the hustle and bustle of everyday life, leaving all your worries at home, heading off to the sunshine to sip cocktails, read books and take a dip in the pool.

Unless you’re a family with additional needs. Holidays can still be fab, but they certainly aren’t always care-free (or carer-free!).

Our first break away with Heidi was when she was just a few months old. We had a caravan and Heidi had a list of medical extras. What was I worried about?

Well, as it turned out, I was worried about pretty much everything!

Bearing in mind it had only been a few weeks earlier that leaving the set-up of the spare bedroom (cot, suction machine, oxygen, nappies etc.) to venture down to the lounge seemed like a big deal, actually preparing to leave the house was huge.

I was like a woman on a mission though – determined to prove a point…of course we can go on holiday, we’re not going to miss out, no biggie blah blah blah!

We did make it away – with my spare chargers, lists of local hospital telephone numbers, more spare chargers, spare feeds, spare clothes, spare nappies, another spare charger – and it felt like we achieved what we set out to, but it was far from relaxing.

For example, we took a bottle of fizz, because it felt like that’s what people do on holiday, but we didn’t dare drink it in case we had to drive home or to hospital.

I was on edge in case the electric hook-up didn’t work and I couldn’t use the sats monitor. I don’t think I slept at all for keeping an eye on Heidi and making sure she didn’t miraculously escape from her Moses basket.

I’ll be honest, I was relieved to get back home.

The next time we went was a little better. I was getting less twitchy about leaving the house and started to feel more organised in terms of what we needed to carry with us.

Somehow, and I’m not sure exactly when, we got to a point where it was enjoyable. It felt “normal” (I don’t like that word, as what is normal really, but hopefully you get what I mean).

Heidi got bigger, and our caravan got cramped.

Plus, we couldn’t tow with our wheelchair adapted car, so we took the plunge and invested in Big Mo the motorhome. It was second hand and we had to have adaptions done, but we knew that without it, our breaks away would be harder to do.

There was a lovely spell where things just worked out.

Our packing routine was down to a T, and Heidi was still an ok size to be lifted easily (she’s non-mobile and non-verbal with a diagnosis of dystonia thrown in for good measure).

But, as is so often the case with little ones, Heidi continued to grow.

Chucking her over my shoulder and climbing up the steps to Big Mo (don’t tell OT!) started to get harder, her wheelchair got bigger, and our baggage started to bulge. 

We realised though that booking a more traditional holiday just isn’t that easy for families like ours.

We need a profiling bed (or at least a bed with secure sides – Heidi may not be able to purposefully move, but she does some amazingly big stretches in her sleep!); we need a hoist; we need a wet room and a changing table; we need space; we need wide doors; we need ramps; we need ground floor accommodation or a lift; we need a break!

There are some brilliant places out there – we recently found a gem not too far away and had a lovely weekend away with friends, but truly accessible places like that seem to be few and far between, or expensive, or booked up months, sometimes years, in advance.

It feels like there was an optimum window with Heidi where she was well enough, and small enough to get away relatively easily.

I am of course super grateful for that.

Holidays are an absolute extra, and lovely if or when they can happen.

I do sometimes think that going forward it will be less stressful (and far cheaper!) to stay at home with Heidi, where everything’s set up and I don’t have to worry.

Maybe we’ll just pretend we’re away, now where’s that cocktail menu…