Battle Scars and Bellies

Everyone tells me you aren’t the right size. Below this percentile. Not quite to that one.

You love to eat. But it’s a challenge for you and you burn a lot of calories doing it. It took me too long to accept that you needed a gtube to thrive. You needed a gtube to keep you going when you were too sick or too tired to eat. You needed it to help you grow.

I was afraid of something that ultimately made your life so much easier and gave your body so much more energy.

Every time you get sick I am so thankful for that gtube. And I’m certain you also get sick less often because you have it. You have those extra calories to fight those nasty bugs.

When you can’t fight those germs off, I can make sure you still get your meds and the food/hydration you need to keep you out of the hospital for dehydration.

And your teeth! They love me for it. Those resident dentists in the early days thought your cavities were from nursing before bed, ha! Try several medications laced with sugar several times a day. Try severe acid reflux several times a day. Both of which have dissipated due to not just gtube feeding, but eating a healthy, organic, blended diet. *

As with everything new, tube feeding was a learning curve.

It took a few years even to get into the blended diet. It was scary.

There was no one to support me aside from online forums and a super book, Complete Tube Feeding, I got the BlendTech mixer well before we started using it for blends. I even made oral blends before tube blends.

I was afraid. Afraid something would get stuck. And one evening it did.

I had figured out a way to get Sebastian’s blend through the pump rather than just via syringe.

The pump administers the food at an even pace which is helpful in avoiding reflux for him. It still gets stuck and I have to fiddle with it but once I do it flows through. Except this time it didn’t.

It was either hemp powder or ground flax seeds that did it. I had just changed Sebastian’s mic-key button two days earlier. Those things aren’t cheap. I had to do it again. Luckily I always have a spare, just in case.

So I popped the tube out and I saw that tiny speck stuck and no warm water syringe would clear it. No soda water available either. I switched the mic-key button out and finished giving him his bedtime meds.

After he was asleep I fiddled with the button some more; more warm water flushes and some massaging of the tube. Finally I was able to clear it.

Because that’s what we resourceful mums do. We don’t give up.

Sebastian still has reflux. I try to slowly increase his tube feeds but he loves to eat to (soft puréed foods).

Doctors still tell me he doesn’t weigh enough. I know this. But his legs continue to get longer. I know he’s growing. I also know he will never be the size his age says he is.

I never tell people how much he weighs because it would shock them. But he’s healthy, and the gtube helps keep him even healthier.

I remember the week before his gtube surgery I would massage lotion over his tummy after his bath. I did the ‘I love you’ massage to help move his air through his tummy because it can be so painful for him sometimes.

I remember thinking this tummy will never be smooth or without scars again. It will be changed forever.

It was hard to accept that then. Now I wouldn’t have it any other way.

It’s a battle scar well worn, just like my own stretch marks from birthing two children.

Special Needs Parenting: Questions with Cameron

Do you like school?– “Errrrmmmm I think so, well sometimes I do.”

What’s your favourite lesson? – “Playtime, when I learn to play.”

What don’t you like about school? – “Reading and writing, especially the writing bit – do you know mum my arm just aches soooo much”

Cameron do you feel the same as other children in your class? – “Yes, well I’m not sure mum – I do feel a little bit different because I have a full fleece jacket and some other people don’t and just have their bare skin.”

What’s it like in the classroom? – “There are lots of chairs and desks and things for us to do – there’s some quite good technology in the presentation board that my teacher uses”

I mean Cameron how does it feel, as in what you hear and see? – “Well it can be quite loud sometimes and it could be useful for me to have my ear muffs but you don’t let me wear them inside. The lights can be quite bright and sometimes I hear the dripping from the tap”

Do you find anything difficult?

“Sometimes mum, when I don’t know the answer and I want to copy someone else but that’s not in the school rules. I tap my feet ‘cause I just can’t help myself – I have to sit on my hands sometimes to control them”

Are all the children nice to you? – “Yes of course mum, that’s the school golden rules don’t you know, be nice to each another.  Well actually when I’m a bit silly with my noises like when you tell me to do inside noises then some of the kids will laugh at me but then they get told off”

Is anyone mean? – “No mum, they are not allowed. DId you not hear me, it will break the golden rules!”

“Mum, I’ve had enough now alright – I love you can I get some crisps!”

It’s hard, as a mum, to have these conversations with your child at the best of times; I can only imagine even more so as an ASD parent.

I always like to check in with Cameron’s feelings about school as I know that the long days of conforming, which he does exceptionally well, can be really challenging and draining on him.

Cameron does not know about his autism.

This is something that I am starting to think about now. How will we explain this to him and just exactly when will it be the right time?

I don’t want him to use it as an excuse to misbehave but I want him to understand that he is different and that this is not a bad thing.

Special Needs Parenting: Blue Badges Make Me See Red

Since applying for our own Blue Badge last year, (our little girl is tube fed, needs suction, used to need oxygen, and is in a wheelchair) I seem to have developed this new sense at spotting cars parked in disabled bays without the appropriate badge.

I can do it from some distance now, and it makes me mad.

I’m usually a pretty calm person, really I am, but I found myself the other day saying rather loudly, and sarcastically, “I think you forgot to put your blue badge out”, as someone jumped from their car and breezed past me as I struggled with all our bulky equipment, putting a bit of a sweat on.

They looked at me like I was speaking a different language, and carried on their way.

Of course as soon as the words had left my mouth, I panicked in case they said something back! I don’t do confrontation, instead I keep things to myself then get so annoyed when I’m home for not having the bottle to speak up.

The frustration comes from the fact that people who park without badges just don’t realise the impact it has on others.

I don’t need to be near the shop/pharmacy/park or wherever it may be, but I do need a wider bay so that I can get the doors open and everything (including my little girl!) out.

If I see an end space, I’ll use that instead of taking up a disabled bay, and I know lots of friends who use the same logic.

The, “I’m only nipping in…”, the, “there are plenty of other spaces…” and the, “My mum is at home and she’s disabled…”, just doesn’t excuse non-compliant parking.

I’m at the stage where I am seriously considering printing some leaflets to pop under the windscreen wipers of offending vehicles.

It would be a polite notice (just in case someone had genuinely forgotten to put their badge on display, it’s so easy to do when you’re head is full of what’s on your to-do list), but hopefully make people think about doing it again.

It makes me laugh though – me, trying to change the world, one leaflet at a time!

I also think it would be helpful if places such as supermarkets (some of who are now fining offenders who break the rules in terms of disabled and parent and child parking) had some disabled bays away from the store.

Of course for some, parking needs to be as close to the store as possible; for people like me, who just need the space rather than proximity, maybe bays further away would deter the lazy mis-users, and free up some of the other bays for genuine blue-badgers (which, by the way, also makes me laugh as it conjures up an image of a smurf-like animal!).

So, my plea to all is simple – be a courteous parker, don’t make me go out there with a leaflet!

Not much to ask, really, is it?

Special Needs Families: Storytelling

As it turns out, I had never heard of it because we live in the United States, and storytelling week takes place in the U.K.

The subject was intriguing anyway as my background includes early childhood and elementary education.  I was a kindergarten teacher for the four years prior to having our first child.

As an educator, I understand the importance of reading aloud to children, even before they are born.

There are so many fun ways to get children involved in storytelling, even if they are non-verbal or have other special needs that prevent them from reading a book aloud themselves.

Here are some fairly simple suggestions on ways to include your entire family in storytelling week.

1. Choose a story.

The entire family could choose a favorite book or story to be the focus of your storytelling week.  Or, everyone could name a favorite story to be told on different nights of the week celebrating Storytelling Week.

2. Think of fun ways to tell stories. 

If I was doing this with my family, I would simply read the book aloud the first day.  The next day we would make up a silly song about the story being told.  Another idea is to tell it in different voices, like whispering, or talking like a mouse.  Using homemade puppets to tell the story in the form of a puppet show is a fun way to retell the story.  Or act it out yourselves!  I like the idea of learning sign language for a phrase or word that occurs over and over in the book.

3. Find ways to include and involve your child with special needs in the storytelling. 

Just because your child may be nonverbal doesn’t mean he or she cannot participate in the fun.

Our son is nonverbal.  He can tell wonderful stories without saying a word.

One way he does this is through his facial expressions and body language.  Another way we can involve him in telling stories is with the use of tools.

He has a switch (found here) called the Step-by-Step that allows us to program up to five phrases.

When the switch is pushed, a phrase is played.  We have programmed a phrase from a story that is repeated so he can push the switch when it is time for the phrase to be read.

We have also programmed parts of a song so that each time the switch is activated one part of the song is sung, until the entire song is through.

Another way we have used it is recording the phrase “turn the page.”  Our son can then push the switch when it is time to turn to the next page of a book.

Take advantage of the fun available to your family during Storytelling Week.

Maybe check out a local play or story time at your local library.

Or, create your own fun with some of the ideas above with your family.

Here is the Society for Storytelling website with some additional materials and ideas.

5 Must-Watch Series on Netflix for Special Needs Parents

At the end of a long day, there’s nothing better than tuning into the latest episode of a favorite TV series and catching up with the exploits of the characters you’ve been following.

Lately, Netflix has been the place to go for gripping dramas and laugh-out-loud comedies that leave you craving the next installment.

Here are some of the five best series currently available on the streaming service.

1. Stranger Things

If you like TV series that are packed with drama, tension and mystery, you’ll love Stranger Things.

Beginning with the disappearance of a young boy, this nostalgic 80s-set show unravels to reveal terrible secrets and strange supernatural forces.

Stranger Things was the most-watched Netflix Original series that debuted in 2016, attracting over 14 million viewers aged 18-49 in its first 35 days.

The second season is due to air sometime in 2017, so now is the perfect time to catch up with its first.

2. Orphan Black

With four seasons available on Netflix as of January 2017, Orphan Black is the perfect show to get into if you’re looking for a series that you can build a long-term connection with.

Originally produced by BBC America, this story of sisterhood and suspense enjoys a five-star rating on Netflix.

Lead actress Tatiana Maslany won an Emmy in 2016 for her portrayal of several of the main characters in this series, which tells the story of a group of women who discover they are part of a secret cloning project.

Watch characters grapple with betrayal, loyalty and questions about their own identity in this action-packed thriller.

3. The Crown

Released in 2016, The Crown is Netflix’s take on the reign of Queen Elizabeth II.

The first season follows the young Queen’s early years, including the death of her father and the aftermath of the Second World War.

Netflix has spent a fortune on the production of this historical drama, which was rewarded in December 2016 with a Golden Globe Nomination for Best TV Series.

If you’re looking for a slow-paced drama with recent historical significance, this is the choice for you.

4. Unbreakable Kimmy Schmidt

Co-created by Tina Fey, Unbreakable Kimmy Schmidt debuted in 2015 and returned for a hilarious second season in 2016.

The uplifting sitcom follows the story of Kimmy Schmidt, a young woman who is rescued from an underground cult and has to adjust to life in the normal world.

Given its premise, you might expect the show to be dark or depressing, but nothing could be further from the truth.

Kimmy’s go-getting optimism and sunny attitude will inspire and uplift you even on the most stressful of days. It’s the ultimate feel-good series.

5. House of Cards

If you still haven’t seen House of Cards, now is the time to stop putting it off.

According to WGNTV, it’s the highest-rated show on Netflix!

The fourth season is every bit as thrilling as the first, which debuted in 2013 with Kevin Spacey playing a gloriously evil politician determined to scheme his way to the presidency.

The show has won numerous awards and is full of strong, complicated characters that you can love and hate in equal measure.

Check it out today, but be warned — you might end up binge-watching more episodes than you intended!

What’s your favourite?

Special Needs Parenting: Storytelling Week – My life: The Novel by Kerry Fender.

Rapidly approaching forty, Kerry thinks she has nothing new to look forward to in life; all that lies ahead is a depressing decline into old age beside a husband who’s stopped noticing her. But a birthday surprise leads to consequences that will change her life forever.’


For Storytelling Week I decided to look at my life as though it were a book blurb. Is it a story I would want to read?

My journey into ‘Special Needs’ motherhood certainly has many of the elements essential to an engaging novel.

If it were to write it as one I would call it The Best Christmas Ever.

It has a main character who, at the start of the story is on the cusp of a crisis – she is about to turn forty and is depressed about crossing the threshold into middle age.

But cross it she must, time will continue to tick by, she will get older, whether she likes it or not.

How will she deal with this?

It has dramatic tension: just when the reader thinks they have a handle on the character and her problem, the situation changes: what she took for the first signs of menopause turns out to be an unplanned pregnancy – an unexpected turn of events that places her under stress and both tests and reveals her…character.

All of which creates the next element:

Conflict – both internally (in the character’s emotions or psyche): she feels both dismayed at being caught out at an age when she ought to know better, and relieved at the ‘reprieve’, is worried about the reaction from her spouse, children, parents and friends, concerned about how a third child will change things, and even how they will fit an additional child into the house, not to mention the prospect of being the oldest mum at the school gate.

And externally: between herself and her partner, who had rather different ideas of what life in their forties would look like, and also with her parents, who are concerned about her age.

As the story moves along, of course, the conflicts change; as one is resolved another appears.

No sooner do she and her partner accept the idea of having another child and even begin to look forward to it, than tests reveal a higher than usual chance of the baby having Down’s Syndrome.

Her partner, parents, and doctor are keen for her to have an amniocentesis, but, with a history of recurrent miscarriage, she really doesn’t want to risk it, especially not since she has a growing feeling that she would not act on the information; and if the test was to prove positive she would come under pressure to do just that.

How will the decisions she makes affect other members of her family?

Like any well-paced novel, though, it has a varying rhythm: the tension slackens off just after the mid-point of the story, after no ‘soft’ markers for Down’s are detected at the twenty week scan.

The main character and her husband now set about preparing themselves for what promises to be the best Christmas ever, with the baby due in the middle of the festivities.

It picks up again when we reach November.

With the baby not moving so much, and mum’s body showing signs of going into premature labour, the consultant decides that the birth must be induced straight away, but if there is no neonatal bed at the local hospital, that will mean transfer to Manchester, or possibly even London.

You see, it even has suspense.

All good stories should have a beginning, middle, and an end.

They don’t have to end with ‘happily ever after’, though, and indeed, this story does not.

That is not because the baby, my baby, was diagnosed with Down’s Syndrome, though; rather it is because it ends with ‘to be continued’.

Because having a baby with Down’s Syndrome is not the end of the world.

Nor is it the end of your story – it is simply the start of a new one, a sequel.

The sequel to The Best Christmas Ever will be called A Degree of Difficulty: A ‘Special Needs Mum at University.

In the first book our character went on a journey of growth and development: she went from thinking that she wasn’t much good for anything to believing she was, perhaps, stronger, smarter and more positive than anyone had given her credit for.

Now it’s time for her to put that to the test.

How will she juggle domestic life, disability and a dissertation?

But that’s another story.

Special Needs Parenting: Five Ways to Use Stories to Help Your Child with Autism

My daughter is an avid reader, can write and spell well and has a huge vocabulary.

Meanwhile, her twin brother has no speech, severe learning difficulties and cannot read or write at all.

I still read to them both every single day.

One of our favourite places to go to as a family is the local bookshop and although the children are looking at vastly different books they are both able to enjoy stories in their own way.

Stories are such a great way to help any child, but even more so children on the spectrum who gain greatly from having a visual link to the language and for whom it can also be a multi-sensory experience via sounds, doors to open or even hands on a clock to move.

Often the repetition of children’s stories is ideal for a child on the spectrum who perhaps needs extra time to process the information.

Of course as well as printed books, ebooks or even watching stories via technology, there is also the ability to help children make up their very own stories too.

My daughter loves this especially on car journeys to relieve the boredom.

We have laughed together over silly made up stories but also practiced vital social skills such as turn taking, listening and working as a team.

Here are 5 of my favourite ways to use story telling as a tool to help your child with autism at any level:

1. Read with them in whatever way that interests them.

For my son this is using sensory baby style books with different materials or sounds to bring stories to life for him.

I often adapt stories in books as I read them to simplify them or make them shorter due to his level of understanding or we only read a page and then I try and link something direct to him.

For my daughter, who is an avid reader, I still read to her at a level just above her own reading ability as this introduces her to new vocabulary and texts without the stress of struggling to read new words.

I read in funny voices, different accents and in different places to keep it interesting.

2. Act out the story to help them understand.

For many children with autism or learning difficulties language can be so confusing.

We have had such fun acting out simple children’s stories at home like Goldilocks and Three Bears where we have tried eating out of different plates and lying on each other’s beds while I narrated.

For other stories we have used puppets or teddies to play parts bringing the text to life and helping them both to visualise the storyline.

3. Allow them to make up stories even if they don’t make sense.

Children are natural story tellers, even if they are not able to speak.

When my son brings me pictures or he looks at photographs on his iPad, I use these to tell stories about where we went and what we did that day.

For my son it would be too confusing to make things up that never happened so I stick to the events he will be familiar with.

My daughter, like most children, will happily make up stories while playing with her toys and I play along and encourage this as much as possible.

4. Use stories to prepare them for further events.

Professionals often refer to this as a social story which is a specific type of story used to help children on the spectrum to cope with something new to them such as visiting the dentist or starting school.

If you are not able to write your own stories there are some excellent ‘first experience’ type stories available for children such as the ever popular Biff, Chip and Kipper first experiences or Topsy and Tim.

For children who need more than this there are apps available with free social stories in video format such as going places.

5. Share stories of your childhood to help them.

These don’t have to be long but keep them relevant to your child.

One day after school my daughter shared how a child got wet during assembly as there was a window open on a wet day.

She was anxious this could happen to her and what would happen. I was able to share a story about how I fell in a puddle one day when I was at school and how the school had a basket of spare clothes that I was able to use.

This helped her understand that everything was alright and we laughed at what had previously been a stressful event for her. Stories can be enjoyed at all levels, from the youngest of babies to the oldest in the family.

My son may never be able to tell a story vocally but he can share via pictures which is just as valid as speech.

Storytelling offers us all so much and can be enjoyed by everyone, especially those on the autism spectrum.

On national storytelling week, what story do you have to tell?

7 Ways to Get Fit in the Comfort of Your Living Room

But you don’t need to spend hours at the gym to stay in shape, as there are seven simple ways to exercise without ever leaving your living room.

1. Use Fitness Videos

When you have at least 20 minutes to yourself, play your favorite fitness video.

Choose one that involves using a relatively small area so you aren’t forced to move any special needs equipment you might have in your home.

2. Use a Mobile Fitness App

There are some very effective fitness apps available that provide exercise and fitness tips you can follow at home.

These mobile apps often link directly to a tracking device, so you can monitor your progress and find motivation when you need it most.

3. Embrace the Internet

The internet is home to a huge range of fitness advice that you can utilize at home.

Just a quick search for workout videos on YouTube should give you many different options.

There are specific workouts online that are aimed at people working out in their own home — and many of them are absolutely free.

4. Use a Smart Yoga Mat

The latest smart yoga mats can connect to a mobile app to give you feedback on your technique.

A series of sensors can identify your exact position on the mat.

The app then lets you know how you can improve — and when your technique is spot on.

5. Use a Resistance Band

A resistance band is an elasticized rope with a handle on each end. Using the resistance of the rope, you can perform a selection of common gym exercises without any of the large, bulky equipment you would normally need.

6. Use Your Own Weight

You can use your own weight as resistance for an all-around workout in a very small room. Lunges, squats and step-ups are just some of the simple exercises you can do without any equipment.

7. Do Your Chores

Performing your everyday chores at speed can help you to burn up to 500 calories an hour, which is comparable to the energy burned through power-walking.

Staying in shape when you’re caring for children with special needs is possible – if you plan ahead and use these relatively simple home workout tips.

Special Needs Parents: I Need to Live Forever










I feel it all and more!

I also feel fear or is it some kind of need or determination for something I know is impossible?

Completely impossible but here I am wanting and needing it because what else can I do!

My gorgeous, dear son will need care for the rest of his life, he doesn’t have the option to choose his own house and make it a home, he’s not going to be able to experience fatherhood and the love a parent feels for a child. My son isn’t going to be able to devote his life caring for his family, instead he will be the one needing the care.

I fear the future when my son will need staff to care for his needs, when he lives in a home filled with people that are paid to care for him instead of family that want to care for him.

Will staff be coming and going?

Will they understand him?

Will they know the way he likes his food cut or know the trousers that are his favourite?

Will they be able to read the signs his hands make?

Will they let him touch their faces in that tender way that says “I love you “?

What if someone hurts him and I’m not there to protect him?  That thought breaks me then stamps on my crushed heart.

Will they see him the way I do and melt at his smile, that smile is the cure to everything. The way his whole face lights, a drip of warm feeling,  a dash of heavenly joy and a squeeze of happiness.

So you see I have this need, pure determination to live forever.

I have to always be here to care for him and protect him, I can’t leave that smile and heart of golden innocents.

I eat healthily and exercise in a blind hope of preserving my health.

I stand here fighting the impossible fight that isn’t even a fight really, it’s just the circle of life.

My eldest son tells me, “Don’t worry mum, I’ll care for him.”

“I know you would” I reply, “but one day you will have a wife and family of your own and I could never expect you to be your brother’s carer, he needs you to be his brother and love him.”

I’m not going to live forever here, even Lord Voldemort didn’t manage that.

I can look after myself to keep me here with him for as long as I can but then what?

The only answer is to come to terms with my son being looked after by others. To trust others to be his everything.

We have already started respite, allowing him a day or night sometimes in the care of others.

Preparing us both.

He’s creeping towards being a teenager, some have said it’s the crucial time to start adding outside care into his life. I still feel torn yet I know I’m helping him adapt for the future.

Maybe this is my subconscious back up plan, maybe it’s the sensible bit at the back of my mind saying “no one lives forever”.