First Words At Five!

We’ve never heard a word from her lips – everything Charlie tells us, she tells us with her eyes.

Another common ground with Rett sufferers is large, soulful eyes, and the eyes seem to be one of the very few areas of the body under the control of the Rett brain.

Over the last six months, we’ve been madly fundraising toward the purchase of an eye gaze device, a computer with a special camera that tracks and interprets Charlie’s eye movements.

With this device, she can play games, read books, watch videos, surf the internet (when she’s older of course) – but most importantly, she can communicate with us.

If you’re thinking of the ubiquitous sight and sound of Professor Stephen Hawking speaking, you wouldn’t be far wrong.

In the past few weeks, we have finally loaded all the required software onto the new device.

Charlie has been playing games and quickly mastered the basic moves – much faster than anyone else in the family could when we had a go!

And she loves being in charge and independently choosing. Controlling her world for a change.

Games are one thing, but the communication software is large and complex.

We are at a bit of a loss as to where to start in supporting her, and although we’re working closely with our excellent speech therapy team, they’re almost as new to this technology as we are.

Charlie’s had a few good looks at the communication pages, but is much happier on the games for now.

Last week, after a long session of gaming, we sat at the kitchen table together.

Charlie was eating a biscuit and I was checking some emails beside her.

I put the communication software on screen for her to look at while she ate, not really expecting anything.

A few minutes passed and I felt a tap on my wrist. I looked up from my laptop to see her face! (Which made me laugh!)

Once she had my attention, Charlie started looking meaningfully from me to her screen and back. 

When I followed her gaze, I couldn’t believe what I was seeing.

It was her very first independent communication, especially for me. 

“I love you.”

Has there ever been a better sentence in all the world?

My pride knows no bounds.

I love you too, Charlie-bear. J

Due Date

Although much quieter than my first pregnancy, this time around has had its share of stress.

With Oliver, we pretty much went about the whole thing as any other person would.

Take naps when you can. Send the husband out for cravings. Whine about the weight gain, etc. 

Up until we received his diagnosis, we really had no other indication that things would take a turn in the opposite direction of ‘simple’.

Hospital bed rest at 24 weeks, making it just a day over 30 weeks to deliver Oliver in all his three pound glory.

Besides his list of diagnoses that could have contributed to my body wanting to and successfully ejecting him out early, I had my own – Incompetent cervix.

The one amount of space that has a very important job of keeping my babies in until full term, was incompetent of doing just that.

This of course put me at risk for all future deliveries, of delivering prematurely.

Now, normally the approach for this when pregnant again, would be to place a cerclage in to stitch the cervix closed and prevent it from dilating prematurely. Normally.

But not all doctors follow it, and instead do a, ‘watch and see’, approach.

Beginning at 16 weeks of pregnancy, they usually see you biweekly for cervical length checks and in my case I had to self-administer progesterone injections once a week. Ouch!

If you fell below a certain measurement, and were before 24 weeks gestation, only then would they perform surgery for a cerclage.

I never fell below the range, and thus spent most of my pregnancy stressing out about every little twinge and cramp.

We always just assumed because Oliver came early and I had a cervix incompetent of doing its’ job, that this baby would come early as well.

Thirty-three weeks into my pregnancy, I can happily say that we are still baking this little bun in the oven!

Besides all the worries from the pregnancy, Oliver is due in September for his sixth surgery.

Another tenotomy release of his right Achilles heel.

Even with recurrent casting and AFO braces, his right foot has managed to tighten itself back up not allowing him to step flat properly.

Instead, because his feet were clubbed, when he steps on his right foot he steps on top on it rather than flat on the heel. It just sort of folds underneath.

It is a minor surgery with only local anesthetic, so we hope to be in and out fairly quickly.

Recovery is the only problem.

Casting Oliver when he was young was no problem. But this kiddo is two years old now, and about as rambunctious as a chimpanzee.

We hope to update soon after September with a successful surgery and delivery of Aaden and Oliver’s little brother!

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!

Embracing, ‘Scruffy Hospitality.’

Our parents are elderly, our friends have busy lives and elderly parents of their own to look after, so babysitters are thin on the ground.

When our older children were little we would gather with friends at each other’s houses on weekend afternoons, so that we could all take our children along with us. That doesn’t happen so often now that our children are growing up.

Although one or two of our friends still have young children, and still entertain in this way, it is more difficult for us to participate.

Freddie has no sense of danger, is inquisitive, mischievous, and an enthusiastic absconder.

We have to keep all outside doors, and all windows locked, and the gates bolted. Our friends houses and gardens do not have to be as secure as ours, and it seems rude and presumptuous to start imposing our needs on them when we go to their home – could you lock this and close that, and could you put those away?

Although we do enjoy their hospitality, we can never fully relax and it’s exhausting.

The solution was obvious.

For years I have wished we could entertain in our own home, where everything is already arranged to suit our needs. But my house is not fit for company, and I am not a good hostess.

My mother was ahead of her time – her house was, ‘Pinterest-perfect’, forty years too soon.

I was an only child, my parents both had well-paid jobs and free live-in childcare courtesy of my grandmother.

When my mum wasn’t working she was cleaning, decorating, or shopping for the perfect accessories.

Her taste was expensive, solid, restrained, and obsessively co-ordinated.

Entertaining was a ceremony.  

A white lace cloth was laid, the, ‘best’, Doulton dinner service was brought out and filled with food from Marks and Spencer, best clothes were put on at the last minute and kept clean.

I gave up work when I had children, and as both the youngest and eldest have additional needs, I have not returned.

In my house there are three children, two adults and one income.

The furniture is mismatched, accessories are cheap and cheerful.

On the bookcase, alongside one or two, ‘coffee table’, books, are piles of paperbacks that have been dropped in the bath, and Freddie’s collection of plastic dinosaurs and diggers.  

After twenty years of marriage the matching wedding-present crockery sets have long since degenerated into a randomly assorted selection of different designs and shapes.

We’ve never had a, ‘Dinner service.’

Then I read an article about, ‘Scruffy Hospitality’, that is, opening up your home, and yourselves, honestly to your friends, inviting them to share what you have and accept you as you are, without worrying whether your home is, ‘picture-perfect.’

I realised that, even before Freddie came along, I could not have told you whether or not my friends had dusted before hosting us, whether their carpets were new or threadbare, or whether their crockery matched, or contained food that was home-made or store-bought.

What I could tell you is that the food was tasty, and the company and conversation were excellent.

So I decided to take the plunge, and invited friends over for Sunday lunch.

I did worry what they’d think about this informal approach to entertaining, but I shouldn’t have.

One friend turned up having done some shopping on the way, and asked if he could put the perishables in our fridge.

My mother-in-law turned up unexpectedly and we had to grab an old chair out of the garage, plonk a cushion on it, and squash her in at a corner of the table.

I didn’t plate up, everyone just helped themselves from a variety of containers placed in the middle of the table, and there was little left at the end.

Our rag-tag crockery attracted no comment, but we were complimented on the roast potatoes.

Freddie played on his faded plastic slide while we enjoyed coffee and cakes in the garden.

When he’d had enough he went inside and put on a DVD, we could see him through the window and knew he was OK.

I thought, ‘If we invite them back and they don’t come, then we’ll know it didn’t work’.

But arrangements were made even before our guests, our friends, left.

We felt so much better for having had the company.

It turns out scruffy hospitality is not a shabby idea.

Are You Planning Number Two?

Little do people know that when they ask this question I go home and cry because if only it was that simple to have another child, I want nothing more than to be pregnant again and give Zachariah a brother or sister.

I have absolute desire to make my family bigger as I believe that my calling in life is to be a Mother.

Being brought up in a large family I vision myself also having a large family of my own.

We are still only at the very beginning of our genetics journey, Zachariah is very much a mystery to them and have advised we do not have any more children until they have a clearer view on his condition.

Not knowing the facts behind why Zachariah has so many complex needs and why his brain did not develop the way it should, makes it unknown of how it would affect any other children.

Whilst we adore our son and would not change him for the world, it has been extremely emotional and difficult at times.

Our boy has had to fight so hard on so many levels that personally my husband and I would not like to choose to go through it all again.

When the 28 week scan showed his underdeveloped brain our lives where temporarily crushed and we had to battle worry and anxiety the rest of our pregnancy.

When we were told to consider termination because there were chances of Zachariah not making it, our hearts were smashed into pieces, we prayed every day that we would get to meet our precious son.

This is not something I would not like to revisit.

With all this in mind, we are so truly happy and blessed to have Zachariah, and if it is not the bigger plan to have any more children, then Tim and I will accept that.

The benefits of just having one child are endless and I’m taking them as comfort at the moment.

He gets my undivided attention, which comes in handy where therapy and appointments are involved.

When I think about having another child in the mix I struggle to see it working, having a new born baby as well as a very heavy two year old, who is also completely reliant on me just doesn’t appear doable.

I know many others do it, and I respect them fully, but I’m not sure it’s for me.

You see the constant battle I have with myself? It’s exhausting!

So next time you think about asking someone, anyone, if they are planning another child, pause and think how it will affect them.

I love my boyo and everything he teaches me.

Rochelle, mummy to Zachariah xx

One Step Forward, Two Steps Back

She smiled, clapped, made animal noises on demand, and loved to turn the pages of her favourite books.

She could nod and shake her head for yes and no, and she made everyone laugh by showing off her brand new baby teeth with a huge grin whenever we asked to see them.

Without warning, our baby disappeared into a world we couldn’t reach. No more smiling, no crying, no eye contact.

She stopped using her hands and her physical development stalled.

Since then, it’s been a long, hard road to recover some skills.

She can no longer turn pages with her one semi-functional hand. She doesn’t crawl or walk, and has no verbal communication skills.

Rett Syndrome sufferers are known as ‘silent angels’ because this is a fairly universal element of the disorder.

Despite all this, Charlie is a constant delight.

She is all wide-eyed love and innocence at five years old, and her smile and giggle is infectious.

She loves people, and especially enjoys one-on-one time with anyone. Music never fails to move her, making her laugh or dance, or just listen intently or go to sleep, depending on the song.

Charlie works so hard for the small gains we’ve made.

Her therapies are arduous, often painful and frustrating, but she rarely complains.

We concentrate on physical development and strength, functional capabilities (especially using her hands), and communication through eye gaze.

These three domains seem to each take a turn in the spotlight, although her therapies are mixed and very much cooperative.

This week, her physiotherapy is paying off.

She has been particularly strong in standing, spending time in her walker and even testing her limits with a few independent steps.

She is tolerating difficult positions for longer periods and her Daddy even remarked that she felt lighter to hold, as though she has been supporting herself a bit more when we lift and transfer her.

On the occupational therapy side, however, we seem to be backsliding.

Charlie is having trouble picking up her cup to drink, and drops things more than she should.

She struggles to pick up anything small between her fingers, and her hand wringing and hand-to-mouth behaviours have increased to a point where it affects her ability to finger-feed (the only significant self-care she is capable of).

This pattern is typical of Rett Syndrome, and of our experience with it in Charlie.

It’s hard not to jump on the emotional roller coaster…

The highs of a new skill followed by the crushing defeat of a declining one – but we try to keep some perspective.

Next week, we might find that her grasp improves but her scoliosis becomes more pronounced.

If we throw her communication development into the mix, it complicates things even further.

Last week, she ‘said’ her first words with her eye gaze machine and we rejoiced. This week, she has barely raised enough interest to play the games on her device.

If there’s one thing we’ve learned over the last few years, it’s that we can’t take anything for granted.

We make a conscious effort to celebrate the wins and let the losses flow off our backs.

It’s not an easy balance, but it’s the way we stay positive, and the greatest gift we can give to Charlie is our belief in her capabilities.

She can, and she will. And we’ll have a party when she does.

Life Hacks

We have just added a wheelchair to my son Oliver’s list of equipment.

Although it is one of the smallest in the line of wheelchairs, it can still prove to be quite bulky.

Seeing that we need both wheels, brakes and handles to push him, and seatbelts, there isn’t much we can do much about it.

But making it look a little cooler is doable.

It is pretty awesome that these chairs can now come in a selection of colors that appeal to the kiddos, so we decided to go with neon green.

Because Oliver is still working on trunk control, he has two seat belts – one that goes across the hips for obvious placement, and one big black one across the chest.

Anytime he has a nice shirt on, it is all distracted by the thick, dark seat belt.

Recently in the Zoo gift shop, I saw the cutest seat belt cover in the design of a green alligator. Granted, this cover was made for the seat belt that goes across the chest in the vehicle, it served just the same purpose going over Oliver’s chest belt.

Behold! The unsightly belt that covered most of his chest, was now a scary, yet soft to touch green alligator to match his wheelchair!

The next life hack I would like to brag about, would be shoes for his afos (ankle foot orthotic shoes).

You can indeed find great shoes on sites like Stride Rite that come in extra wide to fit over the foot braces, but the pickings get slimmer when you go from wide to extra wide.

Being that Oliver is not a walker, and still learning to stand with the help of his squiggles stander, we turn to shoes more for the grip they get on the floor.

Oliver’s AFO braces are plastic and slip and slide on our concrete floor.

(We did get lucky with the design and chose cute, yellow braces with elephants on them, so spending $40 on a pair of shoes he would surely outgrow before being able to walk in them, was not so appealing.)

This is when I turned to the community and found a common life hack; Wal-Mart!

Or any thrifty shop that would sell toddler shoes for under $15.

I had to go a size up in the shoe, but we found some pretty styling neon green and blue shoes that had a Velcro strap.

With the braces, the only problem was I could not get the tongue open wide enough to fit the thing in.

That is when I took to cutting off the stretchy, ‘fake’, shoelaces they had holding the tongue back, and taking out the sole of the shoe – this made it easy to slip the brace in and made the shoe deeper for the brace to fit in. Voila!

I now had my $6 shoes for Oliver to wear while learning to stand.

Life can be hard enough keeping track of all the equipment my son uses, so why not make it look good!

If you have any hacks you’d like to share, please comment below!

You Either Laugh Or You Cry

I know it’s not a huge epiphany, but it’s enough to help me get through the darker days.

Obviously my main reason is my family, but I think kindness and laughter are a key factor in that too.

One thing I would really like is if everyone who reads this could comment saying something that most recently made them laugh.

I really do feel that in times of strife it is nice to think of the happier things and maybe even laugh at ourselves.

Recently at a family gathering we reminisced over some of our clumsier moments and I was almost reduced to tears, laughing.

You would never have guessed I’d barely had any sleep the night before.

It is fair to say that the world is a pretty terrifying place right now. It really is. I have always avoided watching the news because I know how sad it can make me feel.

These days though you can’t consult social media without a torrent of news slapping you in the face.

All I am seeing is hate, war, attacks, violence and every now and then a comical picture of a cat.

It doesn’t take a lot to send me into a sad place where I dwell on things and fixate on how I can make it better.

The truth is, global issues are hard to fix, but I strongly feel that a little kindness from everyone goes a long way.

The other day I was feeling a bit miserable. I had an operation looming, the feeding pump had repeatedly woken everyone up through the night, I was so overdue with my errands and paperwork and so on.

The world was well and truly on my shoulders and I was feeling so overwhelmed.

I started preparing for the nursery run, feed change over, pack meds, check bag is packed with spare gtube button and multiple spare outfits etc.

It felt a lot like ground hog day… contend with traffic, assemble very heavy wheelchair, run in the rain to the door.

But then it happened…. just like that, an act of kindness entirely altered my day and my perception of the world!

At nursery sometimes parents buy sweets for all of the children when it is one of the child’s birthdays. My daughter is not able to eat and is fed 24 hours a day via a feeding pump into her gastrostomy.

One of the mums had bought a bottle of bubbles and attached the sweetest ever note explaining how they know Amy can’t eat sweeties and might want to blow some bubbles instead.

I was absolutely over the moon. Anything at all with the potential to make her smile is enough for me to feel totally elated. 

I rushed back to my car to shed a few joyful tears at just how thoughtful and inclusive this gesture was.

I forget sometimes that amidst the chaos of the world that actually there are a lot of people like this out there.

The people that help you lift the wheelchair off a train, the secretaries that talk to you on a human level as you plough through your phone calls, the parents that explain to their children how my child eats differently to others and helps them understand what a diverse world we live in.

If everyone could be a bit more like that imagine how great the world could be?

Sometimes it can only take one little thing to ruin your day but equally I have learned that good happens too and this is what matters most. 

They say that anxiety can be a good thing as it is a catalyst for action.

I feel that whilst my anxiety is not entirely useful and also a huge drain on me, that sometimes it does trigger the action that I need.

I have been a bit poorly recently and have as a result become very demotivated and a bit self pitying.

When you become demotivated you can slip into bad eating habits, gain weight, lose confidence, fade away, feel discouraged and lethargic.

I am trying to snap out of that and right now I feel like I have that momentum.

One thing I have learned so far in this journey is that if you don’t laugh.. you will cry.

I have also learned that very little can shock me and as a result you can develop a bit of a warped sense of humour and there is no topic that can be considered taboo.

Before motherhood and any of this I was so squeamish at the mention of poop, sick, mucous, all sorts.

Sometimes when I am reciting a story I have to really think about my audience, I have become so desensitised to things that I have to censor myself!

If you’re looking for a chuckle then feel free to picture the time I was at a disco and slipped on a rogue sausage roll on a dance floor.

The lights were switched on, the music was stopped, and the DJ asked on speakers if I was okay.

I had been fine up until that moment when my ego was bruised.

You might also enjoy hearing about the time my dad accidentally de-iced someone else’s car.

You may enjoy perusing this post whilst picturing me getting the valve wrong on a giving set and squirting medicine into my own face (this happens with a concerning regularity). 

So if you’re reading this – be kind, laugh, and always look out for sausage rolls on dance floors.

Meeting George

It was 2008, I was 24 years old and working as a mental health practitioner with a fabulous community team when I discovered that I was expecting our first baby.

We made all the usual plans that any expectant parents make!

We moved in to our first house, and began to make plans for our future!

In February 2009 we were having the worst snow in 20 years!

Living in a really rural village, snow would render us unable to get out of the lane!

Like you could ever predict, this is when George decided to make his appearance.

Thankfully we got to the hospital without incident, as did my mum.

He was born weighing a tiny 6lbs 2oz, to us looking healthy and happy!

It was only really then that I noticed that during the last stages of labour our room had filled with nurses and doctors.

As soon as George was born he was taken off to the side and examined.

My mum said she saw the nurse looking at George’s palms.

You may or may not know that not only is this is a trait of Down’s syndrome, but it is also a trait of fetal alcohol syndrome.

In a moment of panic, I asked my mum if she thought this was because I said during labour I just wanted to be at home with a glass of wine?! She laughed and said of course not this is probably all just routine!

I didn’t think anymore of their checks or the buzz of professionals in and out.

I was handed George and was instantly overwhelmed with that unconditional love and connection that starts to wash over you.

When we were taken up to the ward, Mark followed with a bloody ridiculous sized blue dog he had bought George!  

The snow was falling heavier now, and worrying that Mark wouldn’t make it home I suggested he start his journey!

It was about 4pm and I was sat with George when a doctor and nurse came up to me!

He asked if Mark was here and I told them he’d left because of the weather.

It was then when he sat on my bed and said they thought George had a, “chromosomal abnormality”.

Feeling a little surprised I asked if he meant that George had Down’s syndrome?

Yes, he replied and began to explain why they thought that.

‘He has a low birth weight, he is floppy, he has a shortened nose bridge, and a large looking tongue, and almond eyes.’ 

‘Floppy?’ I said, ‘He’s just been born, surely all babies are floppy?’ 

‘No,’ he said, ‘George’s hypomuscle tone is unusual’.

He then asked if Mark could return so the doctor could look at him. 

You see the thought had crossed his head that if Mark was Chinese in ethnicity or had Chinese looking features that would explain away the, ‘funny eye’!

I often think back to this doctor and think that he really did get the short straw; telling a 24 year old girl, who was on her own, that her baby has Down’s syndrome could not have been fun!

However he really did make a hash of it, because he then just got up and left this poor nurse sat with me not knowing what to say any more than I did. 

That first night with George was what made everything better!

I’d only told Mark as I didn’t want to worry family. It was just me and George getting to know each other!

Watching all the other mums spending their night up and down changing nappies, feeding milk.

I realised my baby right now at this moment was no different from theirs!

Mark came back the next morning and we were ready for a day of tests and telling people our news!

I sent a text to my sister to tell her, I honestly never thought that this was a bizarre way to tell her or that she might be upset!

I think because, to me it was no longer scary or unknown, I presumed others would feel the same.

So, when Claire called me straight back in tears, I initially thought her sniffing was because of a cold!

Our parents were told as was family and close friends!

People’s reactions were so different, and to be honest that for me was the hardest part, trying to manage other people’s emotions and reassure them that we would be OK.

George had blood tests and scans on his heart and bowel.

The tests confirmed that George was our T21 superstar!

Those early days were difficult as it is with any new born baby.

George was suffering from jaundice and needed to feed more, however he found feeding difficult!

Due to his low muscle tone it took him an hour to take an ounce of milk, then he would be so exhausted he would fall asleep.

After taking all that time sitting with him, keeping him awake, he would so often vomit most of that feed back up again.

It was a tiring few weeks but the progress was there.

Each day he was getting bigger and started gaining weight really well.

In the run up to George turning 6 months my life wasn’t too much different than my friends with their babies – we spoke about the same things, sleepless nights, smelling of sick, worrying about starting weaning!

It was at this time that I made most of my closest friends!

Those friends walked my journey with me and treated us no differently.

I am still friends with most of these people now and they probably have no idea how much they helped in those early days.

So, if you guys are reading this now, thank you!

Thank you for those days in mum and baby groups, thank you for those days we visited your house and you didn’t mind me moving all your things to higher levels, sweeping every tiny speck from your floors as George would pick up the tiniest bits and choke on it!

My one bit of advice to anyone with difficult things going on would be to surround yourself with people who let you just be you!

Gone are the days you can worry about silly, trivial dramas.

Lovely, honest kind people will see you through anything!

I was so lucky to know these people, old friends and the new friends I meet on this journey!