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. 

Marks & Spencer to launch, ‘Easy Dressing’, Schoolwear Range

The school-wear range is in addition to its range of vests and bodysuits for older children.

M&S has worked with The National Autistic Society to the develop this new line of school uniform.

It includes:

Boys & Girls short sleeve shirts with hidden baby soft velcro – fastening down to the fourth button – meaning no tricky buttons when getting dressed and undressed.

Boys & Girls pull up trousers with no zips or buttons which will be available in all ages. (They also include additional room for nappies and incontinence pads.)

Unisex long sleeve polo shirts with a two piece collar perfect for kids who have to wear a tie but dislike wearing school shirts.

The, ‘Easy Dressing’, collection is designed to make it easier for children to dress themselves and feel comfortable all day.

The range is guaranteed to be high quality and affordable just what we expect from M&S.

Five Nutritional Challenges of Special Needs Children

Some of our children can’t eat all, while others can’t stop eating!

Below are five common nutritional challenges that children with special needs and their families face, along with a few suggestions that may help combat these issues.

1) Being Dangerously Underweight

Some children with special needs are underweight for a variety of reasons.

Some kids are just too sick and/or depressed to eat.

Others may have swallowing difficulties and others still may have metabolisms that burn their calories at a rate so fast that they just keep losing weight.

For these special kids a feeding tube and/or feeding therapy can prove to be life saving and life sustaining.

My initial introduction into what would become the first of many feeding problems for my daughter Bethany, was her total refusal to eat anything after her brain tumor surgery.

For weeks she was totally uninterested in eating anything other than breast milk. She began losing weight at an alarming rate!

Her doctor wanted to insert a feeding tube through her nose and down into her stomach to fill her tummy with life sustaining liquid nutrition!

I was afraid the formula would satisfy her hunger to the point that she would never want to eat again. Thankfully, my fears were unfounded!

After the feeding tube was placed, she gained weight, began to feel better and became interested in eating real food once again!

2) Obesity

Some kids with special needs lead very sedentary lives and as a result become overweight.

Children confined to wheelchairs or those who have limited mobility and can’t get much exercise may have a hard time maintaining a healthy weight.

Getting our kids moving as much as possible, providing healthy fruits and veggies as snacks, and limiting sweets and chip consumption can help inactive children keep their weight down.

Bethany suffered with an extreme seizure disorder and spent twelve years unable to do anything more physically taxing than walking from her bedroom to the bathroom and over to the couch to lie down.

Needless to say, through no fault of her own, her inactive lifestyle caused her to gain some weight.

When a new medication decreased the number of seizures she had, Bethany was able to be more active and it was easier for her to maintain a more healthy weight.

3) Picky Eaters

Many children with special needs, especially those on the autism spectrum and those with sensory issues are extremely picky eaters!

Some children will only eat certain textured foods, while others may only eat foods of a certain taste or color!

With diets like that, malnutrition is a valid concern.

Offering rewards for trying new foods might help.

If you suspect your child’s eating problem is a sensory issue than  a consult with an Occupational Therapist might be in order.

In any event, picky eaters don’t get total nutrition from their food, so they need to take a good multivitamin!

Bethany gets on these month long stints where she eats nothing but one thing over and over and over again for breakfast, lunch, and dinner.

She rotates between pasta with tomato sauce, bean tacos, salads, and just plain old cucumbers!

A multivitamin and mineral supplement is a must in order for Bethany to be as healthy as possible!

4) Medication side effects

Many of our children with special needs experience medication side effects that can cause increases or decreases in their appetites.

If you suspect that a medication is causing your child’s eating challenges, I urge you to research all possible side effects and report your findings to your child’s doctor.

It may be that another medication can be substituted.

Unfortunately though, sometimes doctors believe the benefit of a medication outweighs any side effects it may cause.

If your child is in this situation, keeping him or her as active as possible and providing low calorie meals and snacks is your best bet for managing medication weight gain.

Topamax, one of Bethany’s seizure medications, literally made her stop eating. She lost so much weight that she became dangerously thin.

So we tried switching her medication to Depakote, which then made her gain so much weight that she was well on her way to becoming obese!

We had to switch her to yet another medication which thankfully helped control her seizures as much as the others had and did not effect her appetite at all!

5) Genetics

Some specific disorders in and of themselves can cause nutritional problems for kids with certain conditions and place them at a higher risk for obesity.

Among such disorders are: Down syndrome, Spina Bifida, Autism Spectrum Disorder, Prader-Willi syndrome, Cohen syndrome, Carpenter syndrome, Borjeson syndrome and MOMO syndrome.

For disorder specific nutritional challenges, I would suggest googling and consulting with your child’s doctors and therapists.

Whatever our children’s specific nutritional challenges may be, I cannot stress enough the value of keeping our kids as active as possible, filling them up with healthy fruits and veggies and keeping track of their calorie consumption!

Teaching The Next Generation

They have so many questions they want answered and so many concerns they are beginning to show.

It can be so hard trying to give them answers without absolutely mind boggling them at the same time or scaring them with the brutal facts.

However, I have always wanted to be open and honest with them.

They are the next generation and it’s important they learn the importance of inclusion and equality.

Young children are so curious!

They will ask quite matter of fact why Zachariah is in a big red chair and they are able to freely roam around.

They ask why Zachariah sleeps a lot and why he doesn’t see the same things they see.

Because we have always been so open from the start they are now really starting to understand, however their questions are getting harder to answer, sometimes because we just don’t know the answer ourselves.

One question was, “Why can’t he walk?”

I’ll be honest, I stuttered and looked to my friend who answered, “his muscles aren’t strong enough at the moment but he has equipment and people to help him”.

By answering their questions and giving them tips on how they can help him, they are learning so much more than if we cover it up or brush it under the carpet. They deserve to be listened to and answered.

Young children want to fix things!

My niece is an absolute sweetie! She is so caring and delicate, recently I received a picture through WhatsApp (shown below) with this written under it:

I’ve drawn a different heart for Zachariah, because he can’t do the same things as we can.

She noticed at four years old that Zachariah is different to her and is wanting to help him. I cried! I cried because of how beautiful it was, although Zachariah wasn’t with her she was thinking about him. 

The fact that it isn’t Zachariah’s heart but in fact his brain that has caused Zachariah to be delayed is beside the point, she has digested the information we have given her in her own way.

The same little niece will bring him a million and one toys to play with, taking the time to hold each one right up to his face and say “can you see it Zachy Pants?”, and the same little girl will stand beside him whilst he’s in his standing frame and occupy him as he isn’t too keen.

She’s patient and loving with her cousin.

The more we invest the more they will be aware.

This blog is dedicated to all those loving and caring children who want to better their understanding and help their friends with disabilities, who want to know more and who have passion at such young ages to make a difference!

I just hope that all the other families out there are encouraging them and spending time with them to talk about all kinds of disabilities to ensure we live in a world full of acceptance, understanding and equality.

I love the next generation and everything they teach me!

Rochelle, mummy to Zachariah xx

Being A Sibling To A Brother Who Has Meltdowns

When my non-verbal son with autism becomes scared, sees something he is attracted to, or simply gets bored; he runs.

It is terrifying for me as his parent, but I often forget just how terrifying it is for his sister too.

I found him a few minutes later flapping at a lift he had never been in before, yet innately seemed to know exactly where it was.

It would have been no use announcing for him over any radio since he hardly responds to me calling his name yet alone a random tannoy announcement.

It would equally have been no use alerting the police since he has no idea who they are and would simply scream and meltdown worse if they went near him.

Experience has taught me the only way to deal with his running is to find him and bribe him back.

My mind goes into overdrive every single time and my heart feels like it will burst out of my chest. 

I am an adult. How much more traumatising, frightening and lonely must it feel to be the sibling when your brother has once again gone into meltdown? 

Suddenly being left on your own HAS to affect you, whatever age you are.

Being abandoned in favour of your sibling has to damage any tender heart.

My daughter is patient, understanding and sympathetic of her twin brother but there are also times when she fears him too.

He currently has a major issue about doors. 

If he sees any door open he instantly changes into an aggressive, physically demanding, loudly protesting and screaming ball of anger.

His sister has been bitten, pushed, scratched, screamed at and attacked during these times to the point she gathers up all her precious items and sits in a corner quietly whenever it happens, patiently waiting for the storm to pass.

My heart tells me she needs so much support, love and reassurance and yet often she sees me run once again to the child in meltdown who, for his own safety, needs me urgently.

Is it any wonder so many siblings of children with autism are crying out for support?

The unpredictability of life with a brother or sister with autism is hard for parents to live with but 100 times harder for siblings.

The change in atmosphere when peace becomes war within seconds creates uncertainty, fear and concern that no child should have to live with.

She should be able to shop without concern that lights, music or crowds will stress her brother out.

She should be able to invite friends around to play without concern about her brother’s behaviour.

She should not be afraid to spend her pocket money on something she likes simply because she knows it might cause her brother to have yet another meltdown.

She should not be prevented going to museums or the cinema just because her brother cannot cope with them.

There are days she gets angry.

There are days she is so obviously scared.

Other days she is demanding, craving the attention she should naturally get but often doesn’t due to her brother.

Yet through it all she is courageous, mature and tender hearted.

She forgives easily, understands more than we give her credit for and refuses to let any meltdown dull the love she has for her twin.

Being sibling to a brother who has meltdowns is very tough. 

I worry about how the reality of this could affect her but she proves time and time again that there is ALWAYS a positive.

I am raising a compassionate, brave and forgiving child because she is a sibling to a brother who has meltdowns.

Let us never forget the siblings. They are amazing.

Starting Nursery

He’s moulded me into a new better person who now has an incredible amount of love to share and a lot of empathy for others.

I literally cannot remember my life before him.

We have a routine, we have places to go on certain days and people we invite over, taking each day in our own pace.

We have become best friends and have a real connection that’s so special.

Being attached at the hips for so long has now brought a lot of emotion as we begin to sort out his nursery for September.

I am feeling slightly overwhelmed that my son will be totally reliant on a complete stranger for a whole day, that I will be leaving him in an unknown place.

Even though he’s been out with family and friends without me, they know him and they know me and most importantly they know how I do things when it comes to Zachariah.

Whereas nursery nurses don’t have that extra knowledge, don’t get me wrong I have utter faith in them and I have chosen a nursery I feel is best for him, but us mummies just can’t help but worry over something!

Despite all this, I’m very excited!

Seeing how Zachariah is when surrounded by his friends I just know he’s going to love being part of a group.

He’ll get giddy on the fun atmosphere and the other children playing with him, and I’m sure he’ll pick up on a few things too.

We have chosen a mainstream nursery, firstly because it’s equipped and educated for children with disabilities and learning difficulties.

Secondly because I want him to experience mainstream before he goes to a school for children with special needs.

It’s now time for me to find myself again.

Look for hobbies, a career or maybe some voluntary work. Spend some time just being Rochelle!

Please leave comments on your experiences of your little ones starting nursery /school! 🙂

I love my boy and everything he teaches me.

Rochelle, mummy to Zachariah xxx

The Sisterhood

Within five minutes of our excursion, I had become agitated.

The cord holding the seat upright on the already broken wheelchair snapped as we entered the store.

After sweating and cursing under my breath for what seemed like an eternity, it was fixed, and the seat was holding my daughter upright again.

Shortly thereafter, my son was pushing her round and round, to her sheer delight.

The store was busy and my blood pressure was slowly rising.

It wasn’t long before I was wondering, “For Pete’s sake, why did I try this today?!!”

My twelve year old is kind-hearted and witty, and he is also on the Autism Spectrum.

He is in a few words, full of energy.

My daughter is five years old, full of love and giggles, and has multiple disabilities.

On this day, the three of us continued on our trek and made our way to the baking aisle.

I stood waiting on my son to meticulously pick out a packet of sugar cookie dough.

At last, he chose the same cookie dough that he always chooses.

During this time, a lady tried to pass by us, as we were blocking the entire aisle.

I gently nudged my son, and using very nice manners, he quickly moved to the side and said, “Excuse us, ma’am.”

She smiled and continued on her way.

When I felt like I couldn’t take another second in the crowded store, the lady turned around and approached us.

She gave me a warm smile and said to me, “Honey, I’m a mom just like you.”

I must have looked puzzled because she smiled and told me that seeing my daughter in her wheelchair reminded her of her own son.

She told me that my son’s hurried actions to move his sister out of the way, clearing the aisle was unnecessary.

She said that she understands exactly how it is.

She asked me if I’d like to see a picture of her son.

She proudly pulled out her phone and showed me several photos of a handsome young man in a wheelchair.

She shared that he was twenty years old, and that he had special needs too.

We stood there like old friends, instead of strangers, complimenting each other on how beautiful our children were.

For a moment in time, the world stopped moving, and I found myself in an unexpected, magical moment.

There was a bond taking place that most people could not comprehend.

Our encounter was brief, and as she started to walk away she said something to me that I will NEVER forget.

She said, “You are my sister and I love you.”

I choked back the lump in my throat and told her the same.

It dawned on me that while I was focusing on surviving a complicated shopping trip, I wasn’t alone.

I was part of a sisterhood that is bigger than me.

While I was worrying about our inconveniencing other shoppers, it escaped me how wonderful my son was for watching over his sister.

He was entertaining her; playing with her in a way that he knew she loved.

I felt extremely proud of him and I then regretted all of the stressing I had done during our trip.

I received a great blessing that day, from a sister in my shoes.

We Were Thrown Together For A Reason

New friends whose bonds would prove to be stronger than anything life with children could throw at us!

Having babies so severely prematurely is a rollercoaster of grand proportions.

And the intensity bit of Neonatal Intensive Care is nothing short of bizarre and petrifying – exaggerating every emotion you can imagine.

But those shared worries, fears and medical procedures.

Those sleepless nights when you don’t know when or if you will see your babies again.

Those tears of frustration and joy and a hundred-odd breast pump jokes.

Watching for each other’s apnoea and SATS alarms when we popped to the loo.

Discussing milk, poo and reflux meds until you can’t talk about it anymore.

This ‘out of world’ experience is what sealed our bonds forever more and is what gives us an understanding that goes unsaid.

Like a secret nod that only we understand, that says: “I get it, I’m here. I’ve got your back.”

I am so lucky. During the time my twins were in NICU I met lots of people who were incredible, but the three ladies that this is about are special.

I now literally cannot live without them.

They have given me support and love and unquestioned understanding that nobody else on the planet could give me.

If they cannot stop my fall, they always pick me up off the floor. Even at times when they barely have the energy and ability to get through their own day. 

They would answer the phone at 2am to me if I were in need. And I to them.

These friendships have grown to become even more invaluable as time has gone on.

Not least because all of our children have long-standing health concerns due to their prematurity.

Yet another reason I’m convinced we were meant to meet. It’s another tightly twisted tie that keeps us all together, knowing that we are not alone.

That every operation, treatment and therapy we have to watch our children endure is felt not only by us as their parent, but by each other.

We all go through it together.

Even when I lose my temper for no reason, they never judge.

They understand the stress and pressure that is on my shoulders like nobody else can. Because they feel it too.

It’s pushing down on them all the time as well.

Yet, despite everything we have going on in our lives, we still manage to have fun! 

To make time to see each other and enjoy life in-between the madness. 

We eat cake (there is lots of cake) and our children adore each other as much as we adore each other. It’s like having three sisters!

Katie, Rach and Lu, this one is for you guys.

Whilst I truly wish our children did not have to endure the challenges and issues that they cope with way better than I ever would, I’m so grateful that the universe decided to throw us together.

We probably would have never met had we not had these little people at the same time and even if we did, who knows if we would have become so close.

I love you all loads. Thank you for keeping me together.

The Simple Things

The first is going out and about with Mummy and Daddy, and Merlin the dog in tow.

The second is swimming; it’s the one time he is truly free to move as he wishes; or not, if he just fancies a nice, relaxing float!

When he was teeny it was easy – we just held him in the water or used an inflatable neck float like the one in the photo.

But now he is getting too big and heavy for the float, and no longer wants to be held as he wants to move independenty.

The trouble is, if we were to let go he would sink like a stone.

We know he loves swimming at school, so when a letter came home the other day offering parents the opportunity to come in to school and go swimming with their children, we pretty much jumped at the chance!

This is yet another example of why we think Sam’s school is the best thing since sliced bread.

They don’t just educate and care for our children during term time, but they are also looking after their interests during the holidays.

The swimming teacher knows that over the Summer, many families will be holidaying, and one of the activities likely to come up will be swimming.

Having someone experienced in supporting people with disabilities in the water to swim and be safe, offer their time to help us as parents learn those same skills, is just invaluable.

It’s not something we ever considered really, we just assumed that we would carry on muddling through as usual, so this opportunity is huge.

We need to know what aids and flotation devices are out there, which are suitable for Sam’s personal needs and where we can get them.

By ourselves I suspect we would make a number of purchases which wouldn’t be appropriate before stumbling upon a solution that works.

This way we can see what he is already using and comfortable with.

It may not seem like much but to us, it’s a big thing.

Being able to be with Sam in the water, knowing he’s happy and safe… I can’t think of much else I’d rather be doing during the summer break.