Thank Goodness for PLAYGROUNDS!

Playgrounds are a staple of childhood. They are a right-of-passage of sorts.

I for one have spent many mornings, afternoons and evenings at playgrounds when my kids were growing up. Free activity, gross motor development, good for your lungs and soul being outdoors.

But boy how I’ve come to appreciate playgrounds even more since Brielle came along.

Who knew that the act of swinging could give much essential vestibular movement?

Swinging on all sorts of therapy and platform swings was a big part of her early days Occupational Therapy sessions.

She loves swinging so much that we even have a bar above her door frame with hooks for various swings (from Rainy Day Indoor Playground).

Nothing beats a walk to the playground and going on the swings in Brielle’s book! Especially if the weather is nice! We live near the sea so we have the added bonus of salty sea-air to clear the airways and lungs. 

Not only was we found swinging to be amazing for sensory imput and the vestibular movement, but we’ve found it a great tool to work on her communication (mainly signing).

As she wants it to happen, she’ll often request ‘swing’. Or ‘more please’. Or maybe she wants one of her sisters or me to go on the bucket swing with her so she’ll sign our name.

Honestly, we could not continue our home program of physio and OT if we did not go to playgrounds.

She also enjoys balancing on the boat, climbing steps and walked the bridge holding the bars (all with a hand on her back as she can’t walk due to her cerebral palsy). And she loves the slide!

It makes my heart so glad to see her outdoors and enjoying ‘normal’ childhood activities too.

It’s a very social thing too, and sometimes she picks up a friend at the playground, who is usually very sweet and helpful, and asking me all about what she can or cannot do.

I’ve been known to shed a tear or two quietly when I see some of the care and consideration afforded to Brielle from complete strangers.

She’s just another 8 year old girl who loves to swing – a very cute one though with obvious disabilities. She really does love playgrounds and we couldn’t be without them!

Thoughts on screen-time for special needs kids

Up until recently, the TV or a video held absolutely NO attention for our daughter Brielle.

She is 8, with very limited vision in her left eye only, is deaf with cochlear implants and has other health needs/disabilities relating to her extreme prematurity.

She has LOVED listening to music, especially nursery rhymes for quite a few years now and will go through phases of a favourite song (in which the rest of us are pulling our hair out as she requests the same song all the time and we invariably comply!)

Before when we would try Mr Tumble or Barney or anything like that on TV and sit her close, she’d quickly lose interest.

We put this down to her very limited vision. Like naturally she loves to listen rather than watch.

Until very recently, the last several months, she has discovered Cocomelon cartoons and nursery rhymes on her iPad, on the screen on my desk, and youtube on the TV. OBSESSED!

She has a new little armchair her size she got for Christmas and she’ll happily watch Cocomelon for quite some time (Wheels on the bus is the favourite at the minute).

She does all the signs and gets really excited. We find ourselves using her iPad more and more for this.

Strangely, we’ve noticed her little temper flare up more that usual recently too and wondering if there’s any correlation to her watching more videos/increased screen-time?

Does anyone else have any thoughts or experience with screen-time/devices and their special needs child and their behavior?

Also I’m not sure we should be letting her watch/listen to Wheels on the bus everytime she asks but we usually do if we can ie. if it’s not smack in the middle of dinner or something like that.

I just feel I don’t want to pander to her every want but at the same time I want to acknowledge that we know what she’s signing and asking for, and give her what makes her happy!

Any thoughts from other parents would be welcome… and here’s a picture of the madam herself with her pink iPad 

Living with Epilepsy

Two of my daughters have been diagnosed with epilepsy.

Elizabeth had her first seizure when she was just six months old. A very healthy and happy baby up until then, it came as a complete shock when she started having grand-mal seizures.

It was very scary to witness your little infant seizing- eyes rolling back in her head and going blue and limp, then shaking, foaming at the mouth and her whole body contracting in a terrible fashion.

I felt completely helpless as a mum.

I hate seizures.

After ED and specialist visits, EEGs and MRIs, she eventually got a diagnosis of “childhood epilepsy of unknown origin”.

Elizabeth is 10 years old now and thankfully she is pretty stable on her epilepsy meds. Her last bout of seizures were a year and a half ago when she was trial weaned off medication and then ramping back up to a therapeutic level.

I don’t know if she’ll ever be able to come off her meds. The doctors had hoped she would outgrow her “childhood seizures” but after we tried to wean her off drugs her seizures came back with a vengeance.

I mainly worry about her in her sleep as well as when she learns to drive, or what could happen if she fell and knocked her head badly during a seizure I don’t like to dwell on these “what ifs”.

My youngest daughter Brielle is 8 years old now and had her first seizure when she was 4.

Her seizures are more subtle involving gulping, drooling, vacant expression, loss of colour and usually some shaking.

Brielle was born very prematurely, she suffered a brain bleed and resulting Cerebral Palsy.

Hence the doctors tell us that her threshold for having seizures was lower than the average person- ie. it is not surprising that she’s developed a seizure disorder.

We are so thankful however that at the moment both girls are well-controlled on their daily medication.

I really do hate seizures and have seen more than I’d care to remember. We’re well used to emergency medications and care plans, and trips to the hospital. It helps to be a nurse mommy too.

So we are living with Epilepsy in our family.

These are our beautiful youngest two daughters on Halloween. Happy little rascals!

Sisterly Kindness

Kindness is…helping me to walk, holding my hand tight so I won’t fall down.

Kindness is… cuddling me on the couch when I am tired.

Kindness is…learning to tube-feed me because you want to help care for me.

Kindness is…comforting me in my bed when I am upset and just need some company.

Kindness is… reading all my favourite tactile books with me over and over again- and letting me turn the pages.

Kindness is…taking me on the trampoline and letting me have fun lying and sitting while you bounce me up and down.

Kindness is…pushing me to the park in my wheelchair and letting me press the lights at the crosswalk.

Kindness is… listening to my nursery rhymes ALL THE TIME, because you know how happy they make me!

Kindness is…taking time to paint a lovely picture with me, even though I make a mess.

Kindness is… helping me to build tall towers with my blocks, you know how much I love towers “up, up, up”!

Kindness is…swinging with me for as long as I want on my favourite bucket swing at the playground.

Kindness is… patiently fixing my hair into two Dutch braids whilst I squirm between your knees.

Kindness is…helping me to get dressed or change my pull-up when Mummy is busy.

Kindness is…holding and twirling me in the water because I love to swim and splash.

Kindness is…being there for me whenever I need a big sister’s love.

When Children Say Hurtful Things

If you are a parent to a child with special needs, you’re no stranger to unwanted comments or stares from complete strangers…often little children are the perpetrators.

I know for a fact that each one of you has had your fair share of unexpected, unwanted and insensitive words directed at your uniquely wonderful child. How do I KNOW?

Well because that has been our family’s experience, and the shared experience of many other special needs parents I’ve met.

You know, comments like “What’s wrong with her?”   and “why can’t she walk?”

The other day, I was at our favourite indoor soft play with three of my daughters.

My 11 yr old Annabelle is fantastic with her younger sister Brielle. She holds her firmly by the hand and helps her walk about, climb up the soft frames and go down the slides.

Without her big sister, I wouldn’t have the energy or patience to bring Brielle to the soft play! The lovely thing is, that both enjoy the time together.

It’s not a “chore” to Annabelle- she genuinely loves helping her disabled sis to navigate soft play and have fun!

There were two young sisters who started talking with my girls. I found out later that they were asking all sorts of questions about Brielle.

I think Annabelle tried to be matter of fact and casual in her responses. But when we were leaving, I could tell she was markedly hurt and a bit rattled by what the older sister (maybe 7/8 years old) had said.

She told her “I’m glad my sister is normal. I wouldn’t like to have a sister like that”.

Tell me this, how do you deal with this insensitivity??

 I feel quite emotional now, reflecting on these words. But do you know what I told Annabelle? I reassured her that some people in this world, including children, are just plain ignorant…

That means the don’t know what they are saying. This girl had probably not met many people with disabilities, nor had she been taught to treat people with physical limitations with equally and with respect.

What is “normal” anyways? I’m guessing that this girl had no relations or friends with disabilities either, at least that she spends any amount of time with.

So for children, I think a lot of their responses to kids and those with disabilities depends both on their personal exposure and education around disability and differences.

Comments like this can nonetheless be very hurtful.

I think it helps to keep a positive outlook though and focus on what we have to be thankful for, and not give any place to negativity or words that are hurtful in our lives. Shake them off!!

My precious little girl does have more than her fair share of disabilities, but she is LOVED, she is TREASURED, and she is HAPPY!

Spending time with GG

She lives in the States and her last visit to Ireland had been over 10 years ago!

It’s so special for my girls to enjoy their great grandmother! I’ll refer to her as “GG” as they affectionately call her- short for great grandma.

She is especially tender with my youngest Brielle who has complex needs.

She’s so happy to see how far Brielle has come from the critically sick premature baby, to a happy and thriving girl of 7!

My grandma is very forgetful. We joke together that she suffers from “short-term memory loss” just like the famous Disney character Dory!

She will ask me the same questions over and over again. Sometimes minutes after I’ve given her the answer.

I’ve realised in a lot of ways; she and Brielle are very similar at this point in their lives…

They crave relationship and companionship.

They don’t like being alone.

They need a lot of repetition and support to learn new things.

They are vulnerable, sometimes unaware of real or potential danger.

They are completely trusting and innocent.

They are dependent on others for many things.

They give genuine love and affection.

They find joy in the simple things.

They love a relaxing massage.

They enjoy a good swim immensely.

They are so positive and happy.

They are expectant and looking for new adventures.

They absolutely ENJOY LIFE!

You may notice this too- that sometimes the elders in our families, and our younger ones or children with special needs, although completely different ages and stages, share these similarities.

They are especially treasured as they often require much of our time and care.

Enjoy your grandparents and even great grandparents if you’re fortunate to still have them around! We love our GG lots!

I love my Daddy because…

He loved me first!

He gives the best cuddles.

He always plays fun games with me.

He holds my hand so I don’t fall.

He carries me when I am tired.

He spins me around on the ‘big chair’.

He learns new sign language to communicate with me.

He always asks me about my day.

He takes me on long walks in my trike or wheelchair.

He brings me on exciting holidays.

He knows me better than anyone (besides mommy!)

He sits with me through appointments and hospital stays.

He keeps me safe and secure.

He knows how to make me laugh!

He provides for all my needs.

He is big and strong.

He helps me to reach my potential.

He plays loud music for me.

He reads my favourite books with me.

He teaches me new things.

He shows me how to be careful.

He protects me from all harm.

He tells me how beautiful I am.

He treasures me, his youngest daughter.

He wouldn’t change me for the world!

I love my Daddy because he is MINE!

*written with gratitude from a 7 year-olds point of view, who has complex needs *

Top Tips for Taking the Stress out of Birthday Parties

Believe me, I KNOW how stressful parties can be!

Here are some things I’ve learned along the way…

Find an activity or venue and have the party there – food & all!

It is SO much easier to have all the excitement (and mess) at a venue and not in your living room and kitchen!!!

All you usually have to bring is cake and candles!

We just had a joint party at our favourite soft-play area for the younger girls and it was amazing- the kids all loved playing, I loved not having to cook at all or clean up afterwards!

For my teen, we went to a laser-tag place and ordered pizza there afterwards.

Keep Things Simple

It can be so fun to get all detailed and fancy on decorations, cake, party favours etc.

But it will all be quickly forgotten lol!


Kid’s always love a good party bag, balloons, yummy cake and snacks, fun games!

Make sure you cover the main things but in my experience, no need to be over the top or perfectionist about it – fun and simple is key!

Especially for my youngest with special needs and her friends, they care much more about the sensory experiences of the party, and  their ability to PLAY at the party.

Don’t try to do the party SOLO…

I’ve done this before and totally wiped me out and sent my stress levels through the roof!

Always take up your partner, friend, older child who offers to help out in any way – the more hands helping out, the lighter the load!

It’s about being a good delegator and keeping things running smoothly.

Know your Child’s Wants & Priorities

It’s SO important to know what your child wants and enjoys most – in order to plan and prioritise for the party!

Depending on their age and development, let them be involved in the planning!

It’s so exciting for them…

My 9 yr old designed her ice-cream cake, planned some games and helped choose party favours.

For my 7 yr old with complex needs, we knew the most important things to her would be to have her buddies from school, be at a familiar soft-play area she ADORES and help blow out the candles and all that – perfect party for her!