Riding for the Disabled

My daughter Brielle has been waiting a LONG time to get into a riding for the disabled group. I put her name down on a waiting list over 3 years ago at the recommendation of her physio. We thought she’d be matched to a local group 2 years ago, I did a training evening for volunteering and then nothing came of it and sadly no horse match found, we’d almost given up hope. Then my contact called me a few months ago and said they’d be running a session in August every Thursday and Brielle’s name was at the top of the list- I was thrilled!

She used to ride the donkeys at our local Donkey Sanctuary until they became too old and unable to be ridden on- that was a huge pity as it was a highlight of her week every fortnight in school. Then school started taking them to horse riding which she loved but again that all stopped with COVID and all the subsequent disruptions.

We went for her first Thursday session last week, her older sister and I as side-walkers holding onto the back of her hoody tightly so she wouldn’t fall. Her balance is pretty awful with her low tone cerebral palsy so could easily fall, but with practice it should really improve her core tone and balance. That’s one of the main reasons we’ve been pushing to get her into riding. She absolutely loved the session and has been signing (asking for) “horses” ever since J

She really enjoyed holding the reins and trying to turn her horse called Sparky left and right between the cones. Also patting it’s mane and feeling it’s soft coat seemed very soothing and therapeutic for her.

Riding for the Disabled (RDA) is an amazing charity and organisation, and I highly recommend looking up your local group and enquiring about getting into a session or at least filling out some forms and getting onto a waiting list. Your child with special needs or disabilities will most certainly benefit from horse-riding in more ways than one! Whether it is physical, emotional, communication, social- horses and horse-riding have so much to offer and it’s a great way to make new friends too!

Not a Care in the World

Today was one of those great all-around summer’s days in Greystones, Co Wicklow. Not a drop of rain all day, the sun graced the skies and the temperature was just right- not too hot, but lovely and warm for just a casual t-shirt combo or light summer dress.

We are down visiting my family for a few days, and have two cousins’ birthdays and a whole lot of catching up to do as we haven’t been down for seven months (thanks a lot, COVID). We always try to squeeze in lots of walks to the park and the beach while we’re down too.

Brielle, my 10 year old with cerebral palsy and complex needs due to prematurity, just loves the wiggle car. Cousins have a blue one they kindly keep around for when she comes to visit, and we have a pink one back home. I don’t know how much longer she’s going to be able to convince her legs to pull her on it and bend the way she does, but somehow she still manages and is great for zipping to the playground or taking to the newly built marina walkway for a good scoot.

It’s amazing the sense of FREEDOM  it gives her. There’s not much she can do for herself or independently and she just loves to be able to get on her car and GO! I did have to help steer and change her course many times during the walk, and sometimes walk her hand-help with one hand whilst carrying her little car in the other.

I didn’t mind apologising to fellow walkers when she zig zagged or cut into their path – to be honest people are generally kind and understanding when they see a little girl with special needs out on a tiny ride-on having a great time without a care in the world!

It was lovely seeing another lovely girl with special needs earlier today. Was one of those times I was seriously tearing up at the sight of a this daddy and daughter duo.

I was walking Brielle after lunch in her Delta buggy down to the beach.  I heard music all of a sudden but didn’t see any street musicians so was wondering where it was coming from. Then I saw them- a daddy and daughter duo locked arm in arm and singing their hearts out to music from a little personal speaker playing an folksy rendition of “You are my sunshine, my only sunshine”.

Absolutely melt your heart sight- the daughter around 15 or 16 years old,  whom

to the onlooker had obvious disabilities, walking a bit unsteadily linked in her Dad’s arm, a look of pure delight and joy on her face, not caring at all that she was singing off- key, walking down a crowded seaside pavement.

For in that moment, she was just a happy teenage girl, holding onto daddy’s arm and having a great time in the glorious sunshine- not a care in the world.

Saying Goodbye to Someone Special

It’s never easy when someone important in your life announces they are moving countries. When my daughter’s respite carer, A, told me she was moving to England for her new job my heart just sank. I’ll be honest, the tears were streaming by the end of our conversation in the living room.

A is an amazing girl. She’s a classroom assistant in Brielle’s school for the deaf and blind, which is how we first met her. She would have loved to stay in the school but sadly a lot of the assistant positions are only temporary contracts with no job security and little rights L

Basically she was told near the start of last school year that she should look for other jobs as there were only a few places come September. How stressful for her…

We had such a great set-up in that she’d walk Brielle home from school on days she was watching her, and usually stop at the park and playground on the way home. Brielle just loved it! We have many fun memories of things A did with her- taking her to the beach, carving and decorating pumpkins at Halloween, taking her on carnival rides, taking her up on double-decker buses much to B’s excitement.

On her last day with us last week, A made a full day out of fun. A bus ride into town, playtime and lunch at Funky Monkeys, amusement ride-ons and finally stuffing a special monkey teddy at Build-a-Bear. It completely floored me- she calls Brielle a little monkey and they made a purple monkey smelling of grapes with a heartbeat you can press and a recording of A’s voice telling Brielle she can hug the monkey whenever she wants to hear her voice- so special!

Honestly feeling a bit lost now at the thought of losing A as a carer – it’s going to be very hard to find someone so caring and attentive to Brielle’s needs. A knows BSL (sign language) and was so amazing at pushing Brielle’s signing and communication. Hoping maybe we can find another person from her school but they’d never replace A.

So thankful for the year and a half we’ve had with her though and I know we’ll be lifelong friends as I know Brielle holds a special place in her heart too.

Mum’s Night Away

Recently, my friend and I went away for a night to celebrate her 40th birthday. We are both busy mums, she has 3 teens and I have 4 girls, from 10 -16 years of age. My youngest, Brielle, has multiple disabilities and complex needs due to being born very prematurely.

With all the craziness of the past year and a half, COVID-19, all the lockdowns and time at home, this was my very first hotel break in absolutely AGES!! And boy did I need the break from the kids (and hubby LOL!). It really does the soul, and body, so much good to get away from everything- even if only for about 28 hours!

It was a little taste of heaven.

We booked a very lovely spa hotel on the seafront, complete with our evening meal, breakfast and massage in the morning. A proper pampering girlie getaway! We made use of the swimming pool and spa area (hot tub, steam room and sauna) both the evening of our stay and the following morning before our massages. What a treat to swim laps in a pool- like I actually cannot remember the last time I did that! I’m usually holding a big 10 year old on my hip in the water so no chance of actually swimming. It was a little taste of heaven, do laps and just completely letting my hair down, not worrying about dinner time and everyone else’s needs.

I’m realising, the older Brielle gets, how vital it is to still make time for self-care, to just be me- Becca. Not Brielle’s mum, her carer. To do things I enjoy too, not for any other reason than to relax and have fun.

To step away from giving, from caring, from doing all the time.

And trust me Brielle is intense – she’s a sweetie but also a monkey! Temper tantrums and meltdowns have become commonplace. She requires 1:1 care – help with peg-feeding, toileting, mobility, communication, pretty much everything, all the time…

A bonus for me was I didn’t feel too guilty about leaving the kids because Brielle had an overnight at respite – which is really LOVES- so Ian and the girls didn’t have to mind her. Funny how I would worry or feel guilty if that was the case- even though she’s equally Ian’s responsibility, I always take the majority of the load.  The older teens are pretty self-sufficient so they had a chilled takeaway night with Dad. I booked our night away when I knew her respite date so worked out so well.

If you haven’t in a while, or ever, I highly recommend a night away to unwind and just do things you enjoy if you get a chance over the summer- you won’t regret it! Carers need to care for themselves once in awhile too.

Summer Beach Days

There really is nothing quite like a carefree Saturday morning with the sun shining, and nothing much planned for the day except a trip to the beach! I do recommend a hearty breakfast of blueberry pancakes and bacon with maple syrup before setting off.

One piece of equipment that has made such trips a HUNDRED times more enjoyable (for me especially) is our Delta all-terrain buggy for our 10 year old Brielle.

She has cerebral palsy and cannot walk as well as other conditions due do her premature birth.

I mentioned in another blog that our social worker actually put in a grant application for us and we had £500 given towards the purchase which was a big help as they are quite expensive- but trust me, such a worthwhile investment! I recently pushed Brielle around streets on Botanic Avenue in Belfast in her wheelchair instead, and it was NOT a fun experience. My feet kept knocking against her anti-tippers, the handles were too short for me and at their max height, it felt very wrikety.

So the Delta buggy…It handles so smoothly on trail paths to the beach, on stones and pebbles and even harder sand. We bought double sand wheels as an extra (for soft sand) but rarely have to use them as we’ve found the standard wheels usually do the job for our needs. Our trips to the beach, as well as walks as a couple (with B) and a family of 6, have hugely increased thanks to the buggy.

Another thing I wouldn’t be without especially in Northern Ireland is wetsuits for the girls! Brielle being the youngest of four gets all the hand-me-downs. For her, being in a wetsuit on the sand gives her so much freedom. Not only does it keep her warm, it gives her extra protection from the sun covering up more than a swimsuit, and protects her bottom as she scoots up and down the shore.

It let’s her have some independence.

She’s usually not too brave about being in the cold water much, but does like to walk handheld up and down the water’s edge and splash! Another favourite thing is to sit on a body board and be pulled along shallow water.

Sand for her is great for sensory play. She loves the feeling between her toes and fingers, and playing with dry, and wet sand. She often puts it on her head and to her mouth in experimentation- she’s been dubbed the “sand monster” by her sisters!

This summer we plan to reserve and make use of some of the water equipment on loan at the major beaches by the Mae Murray Foundation. Check them out online- it is free to register and reserve equipment like water wheelchairs, walkers etc.

Enjoy your days in the sunshine and saltwater everyone!

A Grandparent’s Love

My in-laws visited this morning. We had a chilled brunch together and Granda did his usual duty (which he is very happy to and insists on) of PEG-feeding Brielle, who is 10 and has never eaten anything much by mouth.

After all of us sitting around in the living room catching up and watching the racing, Brielle was restless so Granda took her outside and let her scoot about on her pink wiggle car, up and down the lane. She is FAR too big, too tall for it now, but still manages it somehow! Hoping to find her something bigger for big kids soon (as opposed to the toddler model!)

When they were back indoors; Brielle sufficiently exhausted from her exercise, she cuddled up nice and close to Granny and Granda on the couch. In fact, she was almost sandwiched in-between them. Looking back and forth between the two of them and studying their faces. Brielle is mostly blind so she likes to look nice and close and really study a face.

They would literally do anything for the girls I know.

Just looking at the three of them, in that moment, my heart was just moved. I felt so thankful for such loving grandparents. For all my girls. There’s such a special bond and love that exists between them.

My hubby and I have been able to leave for weekends away, and weeklong trips to the States (pre-COVID of course…it feels like we’re never going to travel again!), only because Granny and Granda so kindly stayed in our house to look after our 4 daughters, Brielle needing the most attention obviously.

They have slowly but surely learnt some sign language, have mastered Peg-feeding, assisted with her mobility and working her many pieces of equipment. Furthermore, they have all-around ALWAYS been there for us as parents, and for their grandchildren. It’s a selfless, unconditional love which I am so grateful for.

She was extremely sick and fragile and fought for her life for over 6 months in hospital.

Over 10 years ago, Granny flew into Seattle from Northern Ireland. I was 25 weeks pregnant and on bedrest in hospital. She was coming to mind our 3 older girls (who were 5 and under) so Ian could work and I could try to rest in hospital and praying baby would stay put and be ok. Little did we, or she, know, that the very next day Brielle would be born by emergency caesarean, weighing in a 1lb 13oz. She was extremely sick and fragile and fought for her life for over 6 months in hospital.

Granny was there for our girls. She has been there for our family, for Brielle’s first 3 weeks and has continued to be there, supporting and loving. Thank God for Grandparents – there is nothing like them.

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

Special needs parenting: A new diagnosis…

Have you ever been in the situation as a special needs parent, where you suspect your child has a certain condition, but you are kinda dreading getting it investigated or getting it formally diagnosed?

I know I’ve personally been in that position a number of times over the last 10 years…

My little (or not so little now) girl Brielle was born extremely prematurely at just 25 weeks and 3 days gestation.

She weighed a grand total of 801 grams (1lb 13 oz)- less than a 2lb bag of sugar!

This put her in the ELBW category (which no, does not have anything to do with an elbow as it sounds! It stands for extremely low birth weight) and meant she was VERY very sick and fragile.

She spent over 6 months in the NICU and underwent many surgeries and treatments, it was really touch and go if she would survive, and was definitely the hardest time of my life.

Fast forward 10 years and my miracle baby Brielle is thriving and growing taller and stronger by the day.

She is almost TOO strong now sometimes for us to manage as she cannot walk independently and is SO strong willed she often pulls us the opposite direction we need to go, or jumps up on us like a baby koala to be carried.

Her 1:1 asked me recently what was I feeding her because she’s so flipping strong! (I replied, spinach like pop-eye of course.)

Which is true… I make her PEG-feed blends as she’s on a blended enteral diet and does so well on it).

Yesterday when I brought her to school, she dropped to the floor just as we got in the first set of doors.

When her 1:1 and I struggled to get her back on her feet, she wedged herself between the door and wall, not wanting to go to her classroom.

She is getting very stubborn and moody these days…She is having more and more meltdowns, and getting very fussy if things do not go her way, or her routine is disrupted.

I finally got to speak to her Pediatrician yesterday and expressed my concerns over her change in mood and behaviours over this past year.

I’m seeing many traits of ASD and that is my suspected new diagnosis.

She can get so worked up and upset that she hurts herself by thrashing, kicking, banging her head against things or hitting herself, biting her hands and arms, throwing herself around.

I’ve had to collect her from school 4 times in the last few months as they just could not get her settled and she was an absolute state.

I know it will be really hard to assess or diagnose for ASD because Brielle is also mostly blind, and she is profoundly deaf with bilateral cochlear implants.

She cannot speak due to her deafness though she communicates in sign languages and gestures.

Thankfully there seems to be a local specialist psychiatrist who has much experience with children who are deaf and those with learning disabilities so plan to get referred to her.

We just want the best for our precious girl and to know how to support and communicate with her in a way that nurtures growth and independence.

Isn’t that what we all want?

Special needs parenting: Help! My child’s a tween!

It’s hard to believe I now have over 10 years of special needs parenting under my belt…

The growing-up hormones, moods, meltdowns was something I wasn’t anticipating in my youngest daughter at just 10 years old! She has three older sisters aged 12, 14 and 16 so we’ve been through the tween and teenage years and changes with them too.

Brielle is different though.

She was born very prematurely at 25 weeks gestation and seems to want to do EVERYTHING early!

I noticed signs of hormonal changes and puberty with her when she was 8. She’s now 10 and the hormones seem to be really messing with her.

We are dealing with daily meltdowns and behavioral issues at school. And before now she was always such a happy, content wee girl.

I am absolutely DREADING her getting her period.

She is still needing regular prompting and toileting daily and wears cotton absorbent trainer pants in case of accidents, so I’m not sure what the best product for home and school will be when she starts to menstruate- which probably won’t be too long coming now.

My head is screaming “but she’s only 10!!!” She’s still my baby girl and I know it’s silly but sometimes I secretly wish she could just stay little for awhile longer!

Although it’s amazing to see her thrive and grow, her legs stretch longer, it’s hard letting go of her little-girl physique and seeing her grow-up.

It’s also harder on us as she gets bigger and stronger as she’s wanting lifted all the time and is getting much heavier so takes a toll on our backs.

She has cerebral palsy and cannot walk unaided though she can walk hand-held and mobilises independently by bum-stuffling.

But she is still a cuddler and jumps up on us to be carried a lot which we try to dissuade.

Also when she lies down in a meltdown she is very hard to get up if she doesn’t want to- this can be in a shop or sometimes on the pavement so is an issue with manual handling (for us as parents as well as for staff at her school).

It’s SO so hard to know with a child who is non-verbal knowing how much of her moods and behaviors are hormonal-based annoyance, if she’s in teething pain (her teeth are a bit of a mess), if it’s general communication-frustration at not being able to express what she’s feeling or she wants, or if she is displaying qualities consistent with the autistic spectrum (this is needing further assessment).

All we can do is love her to bits, and support her every minute to ensure we provide the best opportunities and environment for her happiness.

She is absolutely well-looked after and spoilt rotten by her 3 older sisters especially and really thrives on all the attention she gets as the “baby” of the family