Bringing Therapy Home

In the beginning, we were pretty new to the idea of getting therapy, along with figuring out exactly what Oliver could tolerate and what he needed work on.

He started seeing therapists at only five months of age, and being born ten weeks early you can imagine there was not much we could do.

After all, the little guy was still learning to be in the outside world and gain some weight!

Many visits felt just as stated…visits.

We would sit, watch Oliver try and play with toys and just talk. It was nice having the company but I wasn’t in full understanding at the time of how this was or how it was supposed to help us.

I had no clue that watching him explore a toy on his own, learn to hold it in his hand or even stick it in his mouth for exploration was huge! I just figured this was all stuff a baby “should” eventually learn how to do.

Why did I need someone in my house observing him do it and take notes?

We would be back at it next week and I soon found myself feeling guilty.

Guilty because at the end of every session I would get a little task, homework you could say, to work on with Oliver until the next time we met.

If we had little or no improvement, I would get the feeling of guilt and failure. Like it was my fault he could not accomplish what she had wanted us to do in time.

Now I do want to state that never, ever have our therapists made us feel like failures. There has never been negative remarks on what we have or have not been able to do.

This was just me not knowing how to cope with everything so new.

It was not until I started asking questions on what we could do better at home, or what gadgets would work better in certain situations with learning; that I learned how to make the most out of our sessions.

I did not just attend each therapy session expecting them do to their work and be done.

I now came to each appointment with a list of questions and toys I would find here and there ready for their opinions of whether it would be a good fit or not.

We were now prepared. One of the things Oliver had the most struggle with, was upper body control. Before we came across Firefly and their amazing products, we found a family willing to donate this contraption called the Bumbo wheelchair.

It was not something you found in a store. It was not something recommended by the therapists.

By asking questions during therapy, we knew what exactly Oliver needed to work on, what he enjoyed doing, and what items might help progress his strength.

So we put two and two together; Oliver loved exploring his surroundings but had no means to get around just yet, and chairs like the bumbo helped support him upright while building strength.

Shockingly enough, we found someone who had taken the bumbo chair, put it on a platform, and attached two stroller wheels to the side making a wheelchair!

Too small to fit in most chairs, my little man was now sitting on his own and slowly realizing how the wheels work and could get him from point A to point B.

For our family, we have made the most out of our therapy sessions by being prepared and asking lots of questions.

Two years in, Oliver now has his big boy wheelchair that he uses like a pro and our therapist is still amazed with this bumbo wheelchair!

Recipe For Weight Gain: Strawberry Banana Smoothie

If your child needs more calories, your healthcare provider may suggest adding more high-protein and high-fat foods and beverages.

Smoothies can be a great way to add more calories and protein to your child’s diet.

They can be served as part of a meal – with buttered toast for breakfast, for example – or as a mid-day or evening snack.

Strawberry Banana Smoothie


½ cup whole milk
½ cup plain whole milk yogurt
½ cup frozen strawberries
1 banana
1 tablespoon ground flaxseed


Mix all ingredients in blender and serve.

Nighty Night: Getting Our Special Needs Kids to Sleep

Obviously, our daughter couldn’t sleep that very first night in hospital because she was terrified!

She was hooked up to all kinds of frightening life saving machines and monitors and was not allowed to nurse for the very first time in her life!

I couldn’t sleep because I was terrified she might die and it was killing me that I had to repeatedly refuse her attempts to nurse.

There was absolutely nothing I could do to help or comfort my very precious and very sick baby.

Over the years, at the suggestions of Bethany’s doctors we’ve tried many ways to induce, promote, and help her stay asleep!

The first suggestion was to give her Melatonin about an hour before bedtime.  I have to admit that it did help her fall asleep at a decent hour, but it didn’t help her stay asleep all night.

Plus, it also made her very grouchy the next day. We gave up on it!

The second suggestion was to give her Benadryl. Unfortunately, this medication did the opposite of making her sleep. It made her hyper and aggressive!

We only tried that once!

I’m sure we tried another medication or two, but I don’t remember what they were called and they didn’t work well enough to keep her on them, either.

And anyway, I felt like she was already on too many medications, what with taking three just to try to control her seizure disorder, so we decided to stop trying medications to get her to sleep.

I was getting kind of desperate to get Bethany to sleep through, because I was the one who had to stay awake with her.

Because of her unpredictable seizure disorder and her lack of understanding the concept of danger she needed and still needs total supervision while awake!

One day, during a desperate online search for better, more natural sleep inducing methods,  I came across the term, sleep hygiene.

It sounded very professional and very promising!

Basically, sleep hygiene is a bunch of practices that if followed routinely, should assist in helping anyone get a better night’s sleep!

I quickly found out that we had been allowing Bethany to break two of the most  important rules to getting a good night’s sleep!

We were letting her watch movies and play on her iPad in bed and allowing her to take cat naps during the day!

I’ll be the first to admit that both of those habits were hard to break, but once broken, Bethany did start sleeping better and thus so did I!

Below are a few tips recommended by the sleep hygiene experts that you can try to help your special loved one get a better night’s sleep:

> Eliminate caffeine from their diet.

> Don’t allow snacks, especially sweets after dinner.

> Be sure your child gets plenty of vigorous exercise each day, but not just before bedtime.

> Be sure your child has adequate exposure to the daylight hours.

> Establish a calming bedtime routine.

> Make the bedroom a pleasant and calming place.

> Do not use bedrooms as time out or punishment spaces.

> Wake your child up and put him to bed at the same time everyday.

> Don’t allow screen time in bed.

> And the hardest one for me to follow: don’t allow daytime naps!

I won’t claim that following the above procedure has been the perfect solution to all our sleep problems, because Bethany also battles against the seizure medication side effect of insomnia and the seizure clusters she experiences wreak havoc on her sleep routine.

But, I can attest to the fact that following these simple sleep hygiene rules when we can, has improved Bethany’s ability to sleep and therefore mine, also!

H is for: Hospitals

It started with those appointments we unknowingly signed up to the moment we became parents of a child with special needs.

The ones where Paediatricians dish out observations but don’t really do much.

The appointments with therapists of every description possible, from Physio to OT and speech and language to play.

Then the appointments with different specialists as her medical issues unfolded.

The annual pilgrimage to the Geneticist, who lovely lady though she is, only served to scare us even more with her grim predictions and the possibility of yet more medical issues not even on our radar.

There have been a couple of times that we have dashed into our local children’s unit which is just up the road from Lucy’s school. On those occasions I was glad that we go to that ward so frequently the staff know our first names and how I take my tea.

The nurses there are lovely and part of our lives now.

The bigger events, mostly the in the middle of the night seizures, the Sepsis she got at six months old and the string of infections she battled with throughout her toddler years, they all ended us up in the children’s ward 20 miles away from home. Because the one down the road from us is a day ward only.

We got to know these staff too, remembered the names of the helpful ones and tried to avoid the few who were less so.

Staying on a children’s ward overnight is no pleasant experience, it’s noisy, either freezing cold or stiflingly hot and lonely.

On the few occasions where we were kept in isolation and had a room to ourselves, the stay itself was more bearable.

Tucked away in a secluded spot, I’d start to nest build on a small scale, bringing in familiar toys, a blanket etc and try and make it a home from home as best I could.

You simply can’t do that when all that’s dividing you from an arguing family or a child throwing up, is a flimsy curtain.

In a side room you also usually get a fold up bed to sleep on next to your child.

However, on the ward it’s a showdown to get the comfy pullout chair that turns into a very slim sized couch, they are usually pale blue and there is nearly always only one on a four bed ward. Everyone else sleeps uncomfortably on the grey plastic chairs.

The situation was no better when we knew we were going into hospital for planned surgery.

Lucy had three major operations on her hip and thigh when she was age 14 – 17 months old. We had met the wonderful staff before and knew what to expect.

What we hadn’t planned on was us all catching the Noro virus from the poorly little boy in the bed next to us who was violently ill, a lot.

We brought Lucy home in a full body cast which only had a small hole cut out to tuck nappies in. You can imagine how that first 48 hours went!

I’d love to write something positive about hospitals, they are on the whole amazing places covering a huge range of medical issues and little kingdoms in their own right.

But there’s so much more that they could do to make stays more bearable.

I once dreamt up a business idea for a chain of hairdressers and beauticians in hospitals, where patients or their long term visitors or even staff could go to for a little pampering to feel more human.

Back with my feet on the ground and I’ll have to be content with my mini Clarins samples and dry shampoo, both staples for surviving a week on that blue fold down couch!

Áras an Uachtaráin Unveils New “Changing Places” Facility

New, ‘Changing Places’ facilities a first in an Office of Public Works managed building in the Republic of Ireland.

President Michael D. Higgins has announced that visitors to Áras an Uachtaráin will now have available to them modern facilities inclusive of the needs of all citizens. 

Áras an Uachtaráin is the official residence of the President of Ireland and is located in Phoenix Park in the northside of Dublin.

Each year, some 20,000 people pass through the formal rooms and gardens at Áras an Uachtaráin which are already fully accessible with step free access.  

The new ‘Changing Places’ facility ensures that Áras an Uachtaráin leads the way in providing the necessary infrastructure to welcome all visitors.

The principles of inclusion and non-discrimination have been a central theme of President Michael D. Higgins’ work over decades. 

This commitment to accessibility is manifested in the President’s insistence on ensuring full access to Áras an Uachtaráin.

The toilet and changing facilities meets the Changing Places standard and offers a height-adjustable adult-sized changing bench, a ceiling track hoist and ample 12 sqm space for carers. It was installed by leading Changing Places installer Clos-o-Mat.

Its provision is part of a programme of work by the Office of Public Works to ensure Áras an Uachtaráin meets the needs and expectations of the people who use them.

Do get in touch if you have had the opportunity to use the Changing Places in the Áras an Uachtaráin.

If you are interested in a site visit or more information from Clos-o-Mat, visit their website!

When The Goalposts Change

Believing that I was at peace with this decision, last week’s appointment has thrown me off kilter completely:

The question of genetics has been asked; there was shock that he’s never been referred to them before, and once again the subject of whether we wish to have more children was raised.

It had never really occurred to me before that finding out whether Sam’s issues could be due to a heritable reason was all that important – after all, we weren’t having any more children so it didn’t seem to matter so much against the backdrop of everything else that was going on.

And yet, the knowledge that he should have been referred and that the results of those investigations that could have changed our decision has really hit hard.

Probably because I have quite a few friends currently expecting their next baby, and the sadness that we won’t be joining them in the 2nd/3rd baby announcements is still very much there.

It’s a strange feeling. Not grief as such, more a numbness that has sharp edges…

I find when it hits I struggle to focus and concentrate.

I know our decision was made for the right reasons and that Sams condition wasn’t a deciding factor, but even so….

As I get closer to my 40’s knowing that that biological window of opportunity will be closing in the not-too-distant-future seems to have rebooted my biological clock.

But then I remember all my other friends who have never been blessed with a child – friends who tried for many years to have a baby, only to suffer miscarriage after miscarriage.

Those who struggled through IVF but were still suffering the pain of being childless.

My boy is here.

For all he is a complex little chap he is HERE.

Our life has had far more twists and turns than I ever imagined but the happy days still outnumber the sad ones.

If nothing else, my precious little guy has taught me to be thankful for every single blessing, and to live in the moment because no-one is promised a tomorrow.

So, as we face the next round of investigations and tests to try and locate a root cause to Sam’s issues and prepare ourselves for what answers we may get, I intend to keep smiling and moving forward.

After all, none of us can go back to the past, can we? And for now, my little family is still here and happy, what more can I ask.

Picnics R’ Us

We were shopping in town one day, when my daughter was about seven.

We were walking through the lovely little public garden on the edge of the town centre when she asked if we could have a picnic there.

When I pointed out that we didn’t have any food with us, she solemnly opened her little plastic handbag and produced two biscuits in a little case that she had squirreled away just before we left the house.

We shared them sitting on a bench, looking at the flowers and chatting. She was content with our picnic and so was I.

I don’t think I’ve ever been on a traditional picnic, the sort that involves a basket, a tartan rug, and portable plates and cutlery (by its nature so very middle-class).

Ours are always much more downmarket affairs, with sandwich bags, juice in little cartons, and a bit of mismatched ‘tupperware’ if the food includes smushables.

We still love having picnics though, which is just as well, because they were invented for families like ours.

On a tight budget? (We are). Pack a picnic It’s much cheaper than eating out in restaurants and cafes. And, since you only pack what you like, in quantities you will eat, there’s little, if any, waste.

Got food allergies, or very fussy children? (We have). Pack a picnic. You know exactly what is in the food, and you can be sure that, whatever your destination, there will be a suitable meal or snacks readily available.

Got sensory issues? (We have). Pack a picnic. Busy, noisy, crowded eateries can be a nightmare. But with a picnic, you can choose your eating place to suit your needs.

Use a wheelchair, an extra large buggy, or other mobility aids/special equipment? (We have had) Pack a picnic. OK – public places should make provision to accommodate us as easily as the next person, but the sad fact is that many either think they have, but are not really fully aware of the kind of provision that needs to be made, or simply don’t have the ability to make the necessary changes. Either way, it can be difficult to manoeuvre or deploy such equipment in a busy or cramped establishment. Once again, with a picnic you can choose your spot to suit your needs. Having said that, toilet and changing facilities remain a problem everywhere!

The vagaries of the British weather are a consideration, not to mention a considerable inconvenience at times, but I am becoming aware of an increasing tendency for visitor attractions such as museums to offer indoor spaces where patrons are welcome to consume their own food – the Museum of Science and Industry in Manchester is the one that springs first to my mind.

Sometimes, if the little one is fractious and uncooperative at mealtime, or on rainy days in the long summer break, we have an indoor picnic.

I spread a blanket out in the middle of the living room floor and lay the food on that. It usually works a treat.

This year I am thinking of adding a few pot plants to the mix, to enhance the ‘picnicky’ atmosphere.

If it’s raining the windows will be closed – just think … all the fun of outdoor eating without any pesky wasps.

10 Things I Would Have Done Differently

Here are ten things I might have done differently had I known my son would be born with a genetic condition and severe autism:

1. Instead of signing up for breast feeding classes I would have signed up instead for Makaton classes as breastfeeding was a breeze compared to trying to help my child communicate.

2. Instead of researching and stocking up on first size baby nappies I would have researched continence products for school aged children as these would be used much more than tiny cute baby nappies.

3.  Instead of wandering for hours looking at prams and buggies in cute baby blue and beautiful baby patterns, I should have instead been looking into wheelchairs and buggies for three year olds that still are not walking. Cute colours and fancy foot muffs were actually not such a big thing after all. He would outgrow the buggy much quicker than the wheelchair.

4. When looking at teething toys and rattles I should have looked more at practicality than cost since seven years on he is still chewing on them and shaking the rattles the same way he did at six months old.

5. When he made me sick with hormones instead of complaining I should have been more grateful. These days he makes me sick with worry for a lot longer than a few months.

6. Instead of worrying over eating the right foods and keeping myself healthy I would have worried less. When your child has special needs you will look back and blame yourself for everything anyway so I wish I had enjoyed that pregnancy more and not consumed myself with fear over the thought something may happen to contain nuts. Nowadays I have so much more to worry about.

7. I would have cared far less about my changing body and stretch marks. These are nothing compared to the birth marks my child was born with.

8. I would have sang to my baby more in the womb. Some days holding his hand and singing to him like I did back then still brings that same sense of overwhelming calmness and peace we both felt all that time ago. I should have treasured that more.

9. I would have been grateful for the through the night toilet trips more. I had no idea they were preparing me for sleepless nights for many, many years to come.

10. I would have shared more about you. Now I share so much of you with paediatricians, hospitals and specialist and looking back I wish I had shared your first kicks, your first hiccups in the womb and hearing your first heartbeat more. I never wanted to bore people but now I realise how precious you are and wish I had shared your love and your miracle of life sooner.

Of course I had no idea you would be so perfect, yet so unique. 

I loved carrying you inside me but I love seeing you and being with you even more now.

Thirty-seven weeks and five days was not enough to prepare for you so now I am just doing everything I can to keep on preparing, learning and enjoying you every single moment of every single day you are here.

There will always be things I wish I had done different, but you, my son, will never ever be one of them.

‘Twins? I thought you only had one child?’

As my children get older their lives are becoming more and more different and at times I find myself mentioning my son and people look at me like I have an invisible child.

My daughter’s school teacher never gets to see him or speak to him. My daughter rarely gets time to speak about her twin despite him being a huge part of her life.

One child gets invited to birthday parties. Her invisible brother doesn’t.

When we are out, people talk to my daughter but many ignore her brother like he is isn’t there.

At a meeting with professionals recently there was a discussion about helping the children socialise. Places were suggested for my daughter but nothing was suggested at all for my son.

It felt like once again he ceased to exist just because of his disabilities.

In the street my daughter is known because she attends the local school. My son has to be sent many miles away to a school by taxi with no other child in the area and therefore people in the street and community hardly know he lives here.

A friend came to my door the other day with a bag of children’s clothes. Everything was for my daughter as she wasn’t aware I also had a son.

I am not hiding either of my children. Sadly society and the ‘system’ hide my son though.

They send him to school miles away with children who rarely have parties and whose names I don’t know.

Even when his school does do anything ‘in the community’ it is not the community my son lives in so he never gets known.

He can not attend scouts or dancing or football so will never experience the joy of being part of a team or organisation. It is impossible even for him to go outside to play to make friends. 

In fact the only time he is ever away from me, apart from school, is for a few hours respite.

He comes to church with me but is not part of Sunday school. He is not able to take part in Christmas plays or shows or attend camps like his sister.

He is a huge part of our family. He IS known to his therapists and school and respite workers. Yet in the community he lives in, he is often unheard of.

I carry photos and videos of him on my phone. I delight in telling people about him though part of me wishes he could introduce himself.

A staff member of my daughter’s school saw me recently with my son for the first time as I tried to calm him down after a meltdown.

“This is my son.” I said with a smile.

“Wow. I never knew!”

It’s like I live two lives with two different children. One minute I am the visible mum to the child people know and then I am the mum to this invisible child that people still seem shocked to hear about seven years after he was born.

I am a proud mum of twins. Both of them deserve to be known.