Living Outside of the Bubble

I often wish I could insulate my medically-complex daughter in an imaginary ‘safe bubble’, sheltered from everyday microorganisms and harm.

But it’s simply wishful thinking that I can protect her like this.

Unless you’re the ‘bubble boy’, or suffer from severe combined immunodeficiency (a genetic disorder which results in an extreme vulnerability to infectious diseases) and require specialized intensive protection from pathogens.

My five year old has chronic lung disease and asthma resulting from her extreme prematurity.

I do not even know off hand how many times she has been hospitalized with a chest infection.

But off she goes to school every morning just like her big sisters.

She LOVES school! I couldn’t deprive her of that time and independence. But boy do I hate all the bugs she picks up…

She wasn’t even back a week at school this term and her teacher called me to say there was a cold going round and I should take Brielle home early.

Low and behold she didn’t escape it, and was coughing and on nebulisers and increased steroids for the following week.

The fact is, she is in school five hours a day, five days a week with a classroom of other children and staff.

There are a multitude of bugs on the floors, the counter tops, door handles, play equipment and EVERYONE’S hands.

And she depends on people’s hands SO MUCH as she cannot walk without the assistance of a hand, and receives information and communication through touch and tactile sign language.

So she is relying on other’s hands being kept clean too for her own health.

As a mom, and a nurse, I recognise the fine line between letting her build up immunity by being exposed to germs daily, and protecting her health from infectious disease.

I am somewhat of a fanatic on hand cleanliness!

Really, it is one of the best ways you can protect your health and prevent infection!

So Brielle gets her hands washed very often, and thankfully just loves playing with soap and water. It’s very sensory

And I will continue to keep her home from or off the bus if I have my doubts about a bug going around.

I find close communication with the teacher and her assistant essential to let them know her vulnerabilities.

That’s all I can do- she can’t live in a bubble!

Watching My Kids Gain Independence

My eldest of four daughters embarked on her secondary school journey a couple of weeks ago.

Much trepidation, anxious questions, queezy morning-tummies, new uniform woes, public transport logistics – some of you can totally relate!

I don’t know who was getting more worked up- her or me!

I tried to play it as cool and calm as possible, sharing with her encouraging tales of my own secondary experiences and joys.

But the truth was, she needed to just get out, get to her new school, and find some things out for herself.

I felt like I was suddenly letting slack on the string of the kite I’d been holding so closely.

But it has been good for her, and for me too. My 11 year old is growing up. She is entering a new phase of life and I need to nurture her where she is at.

Yes, independence leads to more risk, more uncertainty. But it is a necessary part of growing into an independent adult.

My youngest, now five, on the other hand, may never be fully independent. And that is ok. I’ll be here for her.

But I must celebrate every step she takes towards independence.

Sometimes her unique path towards independence is downright nerve-wrecking!

She has cerebral palsy and is not walking or able to stand independently for more than a few seconds.

But she is great at cruising the table, the kitchen counters, and more recently, she can pull up at a doorway and open the door!

It is hard to watch her struggle to balance on the handle, push it down, and try to pull backwards without falling over.

But we understand the need to let her try, gaining strength and co-ordination.

Anxious as we are that she is going to fall flat on her face.

We maintain a close distance to save if needed, but give her space to try.

Playing at the playground is another example of her trying to do everything.

Sometimes she even pushes us or our hands away, although without them she will fall right over.

She wants to climb, swing, slide, bounce, and DO everything!

I constantly feel that balance between protection and independence with her.

I want my children to feel enabled to grow in independence, knowing that we will always be here for them and love them unconditionally.

Disability Labelling

I, for one, have a major problem with labelling and stereotypes.

I fear that people can make unfair, preconceived judgements of others depending on the label given to them.

For instance, I cringe when I hear someone say the, “Down Syndrome boy”.

Thousands of babies around the world are born with the genetic disorder that leads to the diagnosis of Down Syndrome (or trimsomy 21). In fact, it is the most common genetic disorder in the human species.

All of these babies who grow up into children and adults, are unique and wonderful individuals!

How unfair to assume they are all the same or describe them by their syndrome.

I’m not saying that there aren’t a number of distinguishing features of the condition.

But please do not label a child with so much potential for happiness and success in life by his condition!

I know a couple people who have Downs and they are the happiest, brightest people!

There’s something to be said for innocence, and unbridled trust in and acceptance of others.

Their love and joy is infectious!

As parents, and a family as a whole, we too have felt what is like to be different and to stand out. Our youngest daughter falls into the ‘disabled’ category.

I must admit it was not easy coming to terms with that, using the terminology at first, or even applying for disabled parking privileges.

Five and a half years ago our daughter was clinging on to life for what seemed like an eternity.

There’s no doubt in our minds that she’s a miracle and meant to be with us, with our family.

That doesn’t mean that she’s ‘perfect’, ‘fine’ or even ‘normal’, but what defines those words anyways? Are any of us?

Our Brielle is an extremely active, happy and adventurous five year old girl who happens to have quite a collection of disabilities resulting from her extreme prematurity.

She has three doting big sisters and a huge personality.

I’d rather see her disabilities as a side-note, a description of her abilities and development, rather than a defining label.

I’ll never forget a few years ago, a woman looking at my daughter in her stroller in the elevator of Seattle Children’s hospital and asking me “what does she have?”

I think my face said it all, but I remember muttering something to the effect of “lots of things”.

My daughter is beautiful and she’s also a little rascal, and yes she does have an A4 list of diagnoses and conditions. It’s fair to say she has multiple disabilities.

But she is learning to live her life despite of those and in her own way and time.

Playground, ‘Friends’.

A friendly little girl came up to my five year old daughter and asked her would she like to play!

This is probably a fairly normal experience for most children. But not for my Brielle.

B did not respond or even look at the girl. But I responded enthusiastically for her “of course she would!”

The girl and B proceeded to go on the see-saw together, ride on the, ‘twisty-thing’, swing beside each other, and climb across the bridge and go down the slide.

It made my heart happy to see my little girl who cannot walk, talk, see or hear very well interact with a cute little stranger in a completely typical way at the playground.

The stuff of childhood.

Of course, B took her direction and support from me.

I was her voice answering back to her new friend. Explaining that she couldn’t walk by herself, or talk.

I have to admit though I felt a twinge of sadness when the girl suggested they go through the tunnel and play at the ‘kitchen’.

B couldn’t make it through there by herself and neither could I support her, it just wasn’t possible.

I suggested they go over the bridge and down the slide again.

It’s hard that she’s so dependent sometimes.

I just want to enable her and let her be as independent as she can be!

Like all special needs parents want for their children.

I’m thankful for the actions of the girl’s dad. He didn’t make a big deal of B’s disabilities or act embarrassed that his daughter asked to play with a girl who obviously needed a lot of help.

He just let them be kids and explore the playground together.

B’s new friend really seemed to enjoy playing with her, and B was happy too, which gives me hope for her future social interactions.

Up to now, she mainly has played with her older sisters, family members or, ‘carers’.

She has a 1:1 at school to assist her interactions as she is deaf and mostly blind.

On saying goodbye at the swing-set, the girl exclaimed rather indignantly, “She didn’t say bye to me!”.

In other words, she didn’t audibly say goodbye back.

I explained to her how she couldn’t talk, but she could wave goodbye and touch her hand, which her dad encouraged she do with B.

It was a very sweet moment for these new playground, ‘friends’.

Holiday Hydrotherapy

My youngest, five year old Brielle has cerebral palsy and limited mobility along with other special needs.

She’s just finished a session of hydrotherapy with her school physiotherapist.

When I’ve watched her during these sessions, she seems to just about tolerate it. Not quite upset, but not too happy or excited either.

Her favourite thing is climbing up and down the stairs grasping the shiny handrail that leads into the pool.

She also seems to like riding on the ‘noodle’ like a pony.

I was a little apprehensive about how she’d manage in Splash Landings water park (at Alton Towers), our first point of call.

Her excitement and joy in the water blew me away!

Brielle had an absolute whale of a time! She giggled and squealed with the splashes and sprays of the waterworks, loved twirling and drifting around the lazy river in our arms, more climbing up and down stairs with a firm hand of support, and enjoyed hanging out with the family in the outside warm pool. 

I decided to keep her glasses on during our splash park adventure – they doubled almost as goggles, keeping out big splashes, as they are a sports style and fit closely.

I’d really recommend keeping your kiddo’s glasses on, if they will stay on in the water.

Not only will they minimize water from getting into their eyes, they’ll be able to see your face and their surroundings better!

Two other essentials for Brielle, both at the splash park and our hotel pool is her beady neck support wrap and her wet suit vest.

The neck support’s proper name is a ‘posture pillow’ and I use it to prevent her from swallowing water, as she has big problems swallowing and I don’t want to risk her aspirating pool water. She wears it happily like a pair of armbands.

Her wetsuit is also invaluable at keeping her warm, as we tend to spend long periods in the water, and hotel pools are not nearly as warm as therapy pools!

We usually reach a point during our swim time when Brielle gets bored or teary.

One new tactic I’ve come up with (bar taking the girls all out of the water), is jumping up and down in water holding her! Brielle gets SO excited, she kicks and splashes too.

It’s fun and good movement for her, activating so many muscles, and good exercise for this mum too!

I’m so happy we’ve had lots of time together in the water on our holidays, and am determined to make our trips to the pool more regular when we get home.

I’ve discovered that hydrotherapy is something you can do with your child too, and have lots of fun doing it!

On Not Backing Down…

Then the miraculous happened –  after two months of much to and fro with the Educational Authority, they conceded.

It was certainly a fight I hadn’t anticipated or needed during our stressful house and school move.

My youngest of four daughters has special educational needs.

Brielle is five years old and has dual sensory impairment, meaning she is deaf and blind, or ‘deafblind’.

She struggles with other health issues too due to her extreme prematurity.

She cannot walk unaided, talk or eat, and needs help with all aspect of daily living.

In her previous school and educational region, we had pushed for the 1:1 classroom support that she needed.

Her safety, wellbeing and education at school simply could not be fulfilled without that personal assistance, and we eventually got this written into her statement of special educational needs.

Fast forward eight months and we are moving house just an hour away into a new educational region, but still part of the same over-arching Educational Authority.

Without any consultation with us (her parents), or new advice/assessments from any professionals, the new region thought it would be a good idea to try to sneak the 1:1 assistance bit out of her statement.

Oh no you don’t!

I immediately contacted them with my concerns and also signed the form that I did not agree with the amended proposed statement…

Two months of stress and telephone calls, meetings with her new school principal and emails. WHY?

They had no right to change her statement and they knew it.

Although our address and her school had changed, her needs had not!

Government departments will always try to save money.

It’s their prerogative I guess.

It’s just such a pity that they try to stick the arm in and take the services from little ones who already have so much to deal with and overcome in life to succeed.

I was told that her new school accepted her amended statement and agreed (they didn’t), and that there was no way she could get full time hours of classroom assistance in a specialist school.

I firmly stood my ground and asked them to issue the final amendment so it would trigger my right to appeal.

They knew where I’d take them and they didn’t have a leg to stand on!

My advice if you find yourself in a similar fight: you know your child best and what they need.

Get the support and backing from the classroom teacher, principal, charities or a children’s law team.

Let the educational authority know that you have this backing and support, and that you intend to make an appeal.

Don’t accept any less, it will pay off if you don’t back down!

Sometimes I Just Wish We Could Blend In

The problem was at the exact time she decided to do this, I was also pushing a syringe of Fortini smoothie into it… Disaster!

Orangey brown liquid went flying forcibly into the air.

The poor boy beside me didn’t know what had hit him. He was sitting with his back to us, so his shaved head and T-shirt took most of it.

I was so mortified I wished I could just disappear.

The 10 year old boy just sat still, frozen in shock and his brother and parents were quiet and solemn.

I don’t blame them really, they had no clue how to react.

I profusely apologised to the boy and his family whilst wiping smoothie off the back of his head with my serviette.

I told them she had pulled her tube out but not to worry, it’s just baby food.

Meanwhile, Brielle explodes in fits of laughter as she realises that she’d succeeded in pulling out her tube.

Sometimes, actually quite often, I just wish B could eat and I didn’t have to discreetly tube-feed her in public or clean up her many messes.

Sometimes I wish we could just blend in with everyone else in the restaurant.

The previous evening we were taking a walk and Brielle was in her yellow walker.

We came inside to the foyer and heard the music and saw the lights. I walked over with the younger two as I told my husband “Brielle will love dancing and the lights.”

Sure enough, there were lots of little tots dancing up on a little stage and disco lights overhead. Mostly under five.

We made our way up to the stage to stand under the lights and observe the dancing.

So many stares!

Thankfully my little princess is oblivious to kids staring or other parents pitying the little girl in the yellow walker. She can’t get up on stage and dance.

I had planned to take her out of the walker and hold her hand to let her dance alongside the other children.

But an overwhelming feeling of standing out and Brielle having a disability just hit me.

In that moment, I just wanted to blend in with everyone else, but we didn’t.

Brielle stood there in her walker and quietly looked up at the flashing lights with her big glasses, while lots of little eyes stared at her and her apparatus.

Thankfully, in her innocence, Brielle for one is blissfully unaware. 

The Beauty of Communication: Special Needs Parenting

I’ve come to appreciate just how vital communication is.

My little girl has always had a very tough time communicating.

That being said, she has come SO far in her four years and we couldn’t be prouder of her!

Brielle is deaf and wears cochlear implants, she is mostly blind too.

She doesn’t talk and vocalises very little. However, she is learning how to sign in response to hearing us, and uses some tactile sign and gestures.

It has been so exciting to see her little-self develop…she recently started initiating conversation, or asking for things, by doing a simple sign.

For instance, she hears the water running at the sink and she’ll do the sign for “wash hands” or she is feeling hungry and she’ll sign “eat” and head towards the kitchen.

Many people speculate on whether she will ever talk.

We’ve worked with our fair share of speech and language therapists, audiologists and teachers of the deaf, both in the US and the UK.

Many keep pushing for vocalising and speech.

But you know what?

It really does not bother me if Brielle ever talks.

As long as she can communicate effectively, which I have a feeling will be in sign language, probably mainly tactile sign.

My desire for her is to be heard and understood and to receive information in a way that makes sense to her.

Yes, it would be great if she wants to keep using her cochlear implants to gain access to sound and speech.

And understand speech as much as she is able.

But when she is older, if she decides not to use her implants, and wants to rely wholly on sign, well that is her choice to make.

There is much more to communication than speech.

I’ve realized that Brielle is a unique being with her own personality and preferences, she cannot be figuratively “put in a box” – although she loves to be put in a box to play!

Sometimes I must admit, I do long for her to open up her little mouth and let out some sounds, attempt a wee word! But I don’t have my heart set on it.

I’m content in knowing that she will show us what is right for her, in her own time, on her own terms. We just have to provide her with the best possible tools and opportunities to learn, and reach her full potential.

I never knew before Brielle came into our lives just how beautiful communication can be.

But I know how difficult it can be too. I’ve felt the pain of having very little communication from her.

She was so sick for her first two years really.

She didn’t move much, she hardly cried, she couldn’t hear us or understand sign language, she didn’t show much response to us or our attempts at communication.

Now she is a different girl.

Her personality is shining through, she shows so much emotion, she is affectionate, cuddly and clingy even.

She smiles and laughs (albeit a rather silent laugh), she cries quietly and moans, she sometimes lets out little shouts and noises in excitement.

She communicates with her facial expressions and eyes.

She is learning to ask for things in sign language.

She is learning to listen with her implants and with her hands.

And above all, LOVE is our main mode of communicating.

It’s OK Not to Know What to Say to Parents Whose Kids have a Disability

So how do you deal with it?

For me personally, I’ll be honest.

It depends on my mood, how I process those sort of comments or questions at any given time.

My response and feelings vary, which I think is only human. I like to think of myself as a positive person, a ‘glass half-full’ kind of gal.

However, at times, I’ve taken people’s words very personally and harshly.

I find myself feeling defensive and maddened at what they’ve said about my daughter.

Yes… she does have more than her fair share of disabilities, and it is sad that she can’t do many things, but you know what?

She is MY precious little girl. She is LOVED immeasurably.

And she is HAPPY!

Another approach I’ve taken is to tell myself that the person directing the comments means no harm and is merely ignorant when it comes to people with disabilities and special needs. 

They simply do not know how to interact or what to say, so I should cut them some slack.

Maybe try to educate them a bit.

They’ve probably never known someone who is deaf with cochlear implants or seen a child getting a tube-feed.

So I take time to talk

That is, if they want to take the time to listen or if they really care to learn about our life.

I would say I’m pretty good by now at reading people’s non-verbal cues and interpreting tone.

I won’t waste my time offering information if the person seems bored or uncomfortable…

Being a mother of a child with multiple disabilities has made me more sensitive in how I interact with or start up conversation when I see another child with visible issues.

I don’t awkwardly and quickly avert my eyes or turn away when I see a kid who looks blind or is ambling in his walker.

I try to be friendly and offer a smile.

I may comment to his parent/ caregiver on how well the child is doing in his walker, or how cute her hairstyle is.

 So I’ll try to say the right things.

Things that I would like to hear, as a special needs mama.

And I’ve learnt that sometimes, you just may not have the right words.

You might be stumped.

But that’s OK.