Screen Time

My 9-year-old daughter is deaf with cochlear implants and mostly blind, non-verbal, and requires close supervision and assistance round the clock.

Middle of March is a LONG time to be out of school, believe me. Any of you with children in the same boat will wholeheartedly agree I am sure.

During Lockdown, Brielle’s class teacher and her 1:1 assistant sent her little videos she could watch on her tablet of her favourite nursery rhymes and songs, and Tac Pac songs with actions. She watched these over and over again! Along with some of her favourite You Tube stations.

Needless to say, her pink iPad has become her (and my) new best friend!

Never before did we rely on it for her entertainment and education so heavily.

My husband even sweetened the whole experience by buying a £30 Bluetooth receiver that jacks directly into her cochlear implant and means she can hear the songs but the rest of us don’t have to be subjected to ‘Hickory Dickory Dock’ over and over again! Genius invention.

Honestly, we wouldn’t have survived Lockdown and summer holidays this year bereft of any camps or usual activities without her trusty iPad.

She can happily watch songs for at least an hour at a time.

Sometimes I feel guilty that she’s been on her iPad too long- but how much really is too much if it’s educational and she is happy and content?

I don’t want her to become a screen zombie or want her iPad all the time, but it really is a great babysitter if I’m completely honest.

I have laundry and preparing food that never stops with six people in the house.

Last night our family treated ourselves to an Indian dinner out (Eat out to Help Out scheme)- sweet deal getting the bill for half price! I gave Brielle her peg feed while we were eating poppadoms and dips, and then she happily sat watching her iPad with Bluetooth receiver while I had my hands and attention free to enjoy the main meal and chat with the rest of the family. It worked amazing. So much less stressful that trying to syringe feed in between mouthfuls of my own dinner!

So, I’m happy enough to use her iPad when it makes sense, in moderation and to reward her too- truth be told she won’t have as much time for it now she’s back in school until 3.30pm!

On Getting Back to School

I don’t know about you- but I am SO looking forward to my girls all getting back to school.

This summer, and in fact the whole of 2020 so far has been like no other I’ve experienced.

I’d never have imagined my four girls would have five and a half months STRAIGHT out of school…

I’d never have imagined most of the world locking and shutting down due to a global viral pandemic.

Usually our summer, two months out of school for my kids, is filled with a flurry of activities and trips.  Summer scheme at school, camps, sports activities, meet ups with friends and family. It’s very busy, and full-on especially with my youngest daughter who is 9 now but pretty much requires hands-on assistance and supervision round the clock.

Brielle has missed out on school camps and the week intensive at SENSE (a deaf blind charity) this summer. Also all of the day activities and meet ups with local vision and deaf charities have been suspended indefinitely. Unless you want to do Zoom- which holds no interest for Brielle due to her sensory impairments. She’s a very tactile girl so the move to digital meet-ups and activities is just not feasible for her.

Initially I thought I’d be somewhat apprehensive and worried about measures to keep Brielle safe at school. Strangely though, I find myself a bit laissez faire now, happy enough with any distancing measures, PPE and extra hygiene measures her school put in place to keep everyone safe.

I would not for an instant consider keeping Brielle back from school at this point.

It is CRUCIAL to her communication, her educational and social development that she be in school.

I may feel a bit differently if she’d been on the shielding list or if children generally had been shown to be worse affected  by COVID-19.  Although she does have asthma and chronic lung disease from being born very prematurity, her paediatrician does not feel she is in the most vulnerable category.

Life does have to go on, and adaptions made as necessary. I cannot keep Brielle in a bubble.

My husband and I are actually a bit fearful of what the autumn and winter will bring this year, as the weather gets colder and cold and flu season kicks in. We are dreading the possibility of another full on lockdown and the closure of schools, and praying it never again needs to happen….

Kids need school. Especially you could argue, vulnerable children with special and additional needs.

Beginning Short Breaks & Respite Care

Our youngest daughter Brielle first got introduced to a local respite facility for children and young people with disabilities over a year ago.

It started off very slowly, a short visit with me to say ‘hello’ and then we’d leave her there a few hours at a time once a month after that.

Then we progressed being picked up from school by the centre and I’d pick her up before bedtime, around 4 hours in total.

I remember her key worker (social worker) coming for an initial assessment and filling out reams of paperwork. Must have been about 2 hours we chatted in our living room for. Of course, at more than one point I got emotional about how great a girl Brielle is, what a blessing she is to us despite being such a handful… I also got a bit terry at the idea of letting her go into someone else’s care, outside of our home.

Brielle has two carers who regularly come in a couple hours at a time to watch her, sometimes take her on a long walk to the park.

But a short break, a respite centre is OUTSIDE of our family environment, outside of our care.

One of my daughters who is particularly maternal and protective was very adamant at first that she definitely did not want Brielle going there, that there was no way she would like it or be happy away from us.

It is most certainly hard to let go of some degree of control, of the protective instinct to care for and protect her at all costs.

Well, let me tell you, Brielle has now had 2 overnights there and she did AMAZING! She absolutely loves “W.H.”, and will sign the letters over and over again!

It was not easy saying goodbye her first night. At nine years old, it was her first night (not counting some early long stay hospital admissions) away from us all.

But I think is really great for her developing a sense of independence, as well as adventure and adaptability.

And it has been great for the bigger three sisters, to have a hands-free “fun” mum- you know, one who can take a leisurely walk down to the beach at sunset and run into the water to swim for a change with them… because I didn’t have to stay on the shore and watch them with Brielle.

So for Brielle and our family, overnight respite has been really positive.

She’ll be offered 2 nights a month from now on, and as long as she’s happy and loving it, all of us are happy. Thankful to our Trust for the service & care for kiddos like her.

Yoga And Special Needs

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!

Enjoying the Outdoors

We’ve been spending more and more time outdoors these past few months, as the sun has been so gorgeous and the rain has, on the most part, stayed away.

There’s not a lot my daughter with complex needs enjoys more that getting outside.

Last summer we made an investment into an off-road special needs buggy- to take her on trails, walks and even the beach instead of her wheelchair. Wheelchairs are just not made for off-road or rugged terrain. Believe me, you’ll know what I’m talking about if you’ve tried it!

She’s 9 years old now, so is getting heavier to push now but her 3 wheeled all-terrain buggy makes it a breeze. She can’t walk unaided and having the option for a longer trail walk means we can enjoy the outdoors as a family of six (Brielle is the ‘baby’).

Another activity Brielle adores is getting out for a ride on her special needs trike. Whizzkidz UK so kindly granted her a gorgeous trike last year and we’ve been getting great use from it – going out every day especially during the pandemic.

We have a few fun things in our back garden too. A giant red spinning top from ROMPA, a rockers chair from Ikea, and balls of all shapes and sizes in a basket she loves playing with. We usually put out a picnic blanket and let her play while we read, listen to music and enjoy the sunshine.

Sometimes you just need to get out of the house…

My older girls have been making a habit of going swimming in the sea (Belfast Lough) in their wetsuits. We’re so blessed to have good friends and neighbours across the road with a private entrance to the beach! Brielle and I go over to their big garden and deck to keep an eye on them, and sometimes she walks on the beach with me and dips in her feet. She usually shy’s away from the cold water pretty fast though!

Today we’re planning to go walking in a forest park and hoping to find some Elderflower we can pick to make some cordial to bottle. I bought the lemons, oranges and citric acid earlier to make a big batch. It’s definitely a summer favourite in our house- sparkling elderflower cordial in wine glasses decorated with mint leaves and frozen berries sometimes!

So, there’s just a few ways we’ve been getting outdoors with the kiddos, and I have to say Brielle loves every minute of it! I think it’s really helped keep her sanity and her mood up during these last few months with no school and very little social interaction. There’s nothing quite like a gentle breeze and the sun on your face!

On the Issue of Public Toilets (still) Being Closed

I don’t know about your family, but since this whole coronavirus pandemic erupted and we were placed on lockdown, we sure have been spending lots of time outdoors! We’re a family of 6 so it can get pretty crowded in the house sometimes.

Plus the girls all being out of school and their normal routine and activities sucks to be honest.

At first we were sticking to our 1 form of exercise daily- just walking or taking the girls out on their bikes from our house. In fact I’ve made it a routine now each day take my youngest daughter out on her adaptive tricycle, she loves it when it’s ‘helmet’ time. We go down the lane  and her sister usually joins us on her bike. It’s nice to have that constant everyday for her.

Since the lockdown rules have now relaxed somewhat, we also like to set out for family drives/adventures a bit further afield. Bringing a picnic is a must. The carparks at parks and forests have re-opened and people are flocking out to enjoy the outdoors and gorgeous sunshine we’ve been basking in!

We drove down the coast this past Sunday for over an hour to a forest park. The car park was the busiest we’d ever seen it. There’s loads of trail options and we have an off-road special needs buggy for Brielle so it’s lovely to get out for a decent trail walk or “hike” (by a stretch of the word) as a family. Really does so much good not only for your physical health but also mental sanity!

Staying at home with a handful of kids is no easy job- as many of you can attest to!

So we arrived at this beautiful destination- hungry for our picnic and most of us needing to use the loo. One problem though is that most public toilets remain closed for health & safety reasons due to COVID-19. That was indeed the case at Glenariff Forest Park.

My husband is very practical and a foreword thinker… Thankfully he’d decided a couple weeks ago that toilet access when out and about was going to be an issue for the foreseeable future. So he ordered this camping toilet “Porta Potti” and the chemicals on Amazon a few weeks ago.

We got to use this toilet for the first time in the privacy of the back of our disability van on Sunday. Works pretty well as the windows are blacked out. At first Brielle was very reluctant but she managed to pee in it eventually!

Who would have thought that in the summer of 2020 little portable potties would be a new family necessity for a day out for a hike or a visit to the beach.

On Feeling Guilty for Not Working

I’m a very ordinary person, mother and wife. My little girl now 9 year old has complex health and educational needs stemming from her prematurity. As she requires 1:1 care, I haven’t been able to work full-time. For the last 3 years I’ve been working as and when I’m able, very part-time. Just enough to keep my skills up to date and my registration valid.

I’m a nurse.

I love caring for my patients and being a nurse.  I love being on the ward and the clinical responsibilities and people’s lives you are touching and afforded the chance to truly make a difference, however small. It is a great privilege. In normal times, I usually take shifts during the day when the girls are at school.

During this COVID-19 pandemic however, I’ve had to make the difficult choice to not accept shifts. Well mainly. I did have what turned out to be only one week in a local hospital. Some nurses were brought in to support the ICU in a COVID IV preparation room with Aseptics.

However, due to limited demand for the drugs for COVID patients, and as I’m only a ‘Bank’ nurse with the Trust (so no fixed contract) I was dropped after a week with some of the other nurses. We expected to have maybe three months in the prep room! I’ll admit is was REALLY nice to get out of the house, get on the motorway, get my ID badge out, and scrubs on! And feel like I was helping the NHS…

I accepted this position as I really wanted to do something clinical, as a nurse, to help during this crisis, without compromising the health of my daughter at home. This is the only non-patient contact job that’s come up for me so far in my Trust.

We are being very cautious and shielding Brielle as she has chronic lung disease and asthma requiring inhalers twice a day, and usually requiring oxygen support if she gets a bad chest infection.

So, you see I’ve been having much guilt staying at home, in comfort and safety, while many of my fellow nurses and other healthcare professionals are on the ‘front line’. Every Thursday night we Clap for the Carers, and I feel bad that I’m not doing ‘my part’.

But where do you draw the line between necessary and unnecessary risks? How can you balance your obligations and role as a mother foremost, but also as a nurse during the biggest health crisis this nation has faced?

I do not know. I wish I had the answers.

Baking in Lockdown

I don’t know about you, but we are all getting a bit stir-crazy in our house…

The weeks of lockdown due to the coronavirus pandemic have just seemed to go on and on.

My four daughters have been out of school since March 16th, almost 2 whole months now L

This is hard on us all in different ways.

My eldest daughter is 15 and she’s an independent and avid baker. Her favourite treats to bake are cookies and brownies J It’s been really sweet to see her taking her little sister with complex needs into the kitchen for some “baking time”.

She sits Brielle up at the kitchen table and gives her a wooden spoon to keep her busy whilst she gathers the ingredients. This tactile and sensory activity is SO good for Brielle as she stirs ingredients, feels the batter, counts muffin liners in the tin, investigate different textures and colours…

To date in lockdown, the girls have made choc chip cookies, almond-butter cookies, apple crumble, brownies, banana blueberry muffins, pumpkin spice muffins and molasses ginger cookies.

It’s really lovely as sometimes all four sisters will get involved.

I love seeing the smiles all around and them working towards a common goal despite their different abilities and personalities!

They are so gentle and patient with Brielle too. She absolutely adores her big sisters and loves being involved in EVERYTHING! I honestly wouldn’t know how I would keep her entertained and happy without the older girls!

Some tips I would suggest if you or your kids would like to get doing some baking in lockdown:

  • Encourage your child’s creativity and consider what makes them the most excited and motivated? You could do some themed cookies or muffins if it’s a particular role model they adore.
  • Work off your child’s tastes and preferences- do they love chocolate, or love bananas? These are so easy to incorporate into many treats! Make something they are likely to enjoy eating!
  • Give your child support but also give them some autonomy and space while they are mixing, measuring, etc. Let them have fun in the process!
  • Enlist the help of older siblings if possible. It can be a really special bonding time for siblings and also you may get the opportunity to take a cuppa & quiet few minutes for yourself!

Deaf Awareness Week 2020

It is deaf awareness week this week, and we as a family have so much to be thankful for.

Our youngest daughter Brielle is 9 and she’s profoundly deaf. She also has bilateral cochlear implants.

She cannot talk, though she does make some noises and says what sounds like “hiya!”

We embrace ‘total communication’ for her.

This means, in a nutshell, she receives input  verbally/spoken language, through sound, pictures/vision, sign language and tactile signs/gestures, switches, technology and tactilely/ touch.

Some would argue that the deaf community is made up solely of those who are completely without hearing and rely on sign language and lip reading for communication.

But I would suggest that the deaf community is a lot wider. My daughter is deaf though she heavily relies on the hearing offered to her via her implants. She loves listening to music and nursery rhymes and understands many familiar words in spoken English.

The way she expresses herself, however, is predominantly in sign language and gestures. We’ve been fortunate as a family to receive guidance in deafblind sign language as well as family BSL (British Sign Language)- taught to us in our home over a series of months. This was so kindly sponsored by the British Deaf Association.

We are constantly learning new signs ourselves and teaching them to Brielle.

She could not absolutely not communicate without sign language, it is her preferred form of expressive communication.

I really think they ought to teach all primary school children basic BSL as part of the national curriculum. Too few people know sign language and that lack of basic communication can be very isolating for people who are deaf in our communities. It’s important to note that a great deal of deaf people chose NOT to use hearing aids or implants.

I work part-time as a nurse and any deaf patients or relatives I’ve had on the wards have always been so thankful that I could *attempt* to communicate in sign to the best of my ability! It makes such a difference to someone as it’s their FIRST language, their ‘mother-tongue’.

So go ahead and teach yourself some basic signs! There are many free resources online to help from simple BSL fingerspelling (the alphabet) to my favourite iPhone App called “Sign BSL”. You can basically search any word and it will give you a few options/videos with the sign language – awesome!