Being a Parent and Being Me

There’s no denying that being a parent is way more work than I first thought it was going to be.

When the midwife came to see me the day after we took our first son, Anthony home she found me still in my night clothes even though it was nearly lunchtime.

As soon as she asked how I was I burst into tears. Being a parent was overwhelming.

10 years later, with two autistic boys and a little girl and I still get that same feeling every now and again.

And when I get it frequently I know it’s time to try and be me, as well as well as being a parent.

It can be simple things, most of which I try and fit in while the kids are at their respective specialist and mainstream schools.

Often it’s linked to being mindful of my choices – and realizing I still have them.

Choosing what radio station I would like to listen to on the way home… or choosing to enjoy the silence.

Choosing what to have for lunch, taking a few more minutes to actually select clothing for the day instead of just picking up and throwing the clothes from yesterday back on again.

Sometimes it’s about taking the help I’m offered when I can.

It’s rare to find someone who can look after my kids without me worrying, but when I do, I try and fit in something for me.

Last time it was doing a home study course and someone watched the kids when I needed to attend college for feedback.

Being a parent and being me are not mutually exclusive, but it can sometimes take a bit of thought and organization.

It’s also worth remembering that being with my kids is often a choice I make as well.

I miss them when I’m away and it is more than just habit and worry, it’s because being a parent is still very much a big part of who I am.

Having my beautiful kids and helping them grow into the people they wish and are able to be is a big part of my identity and one that I’m very proud of.

Some Days

Some days I could punch the air at every little victory won.

There are so many of these, too many to count sometimes – seeing my boy’s face light up as I get in from work after staying late to finish something off.

Reading him a story as he snuggles in closer, treasuring these precious moments before he’s outgrown them.

Some days there are lots of little victories to celebrate.

This week marks the end of the school term, the awards assembly is tomorrow and the children are gearing up for all the usual fun of the last days before the summer holiday begins.

A reminder of how far our children have come in just one year, some walking for the first time, others gaining in confidence to try speaking.

Some days, the memories sit a little heavier on my soul.

At the assembly in school tomorrow there will be some seats left empty; their former occupants no longer with us.

You may think I’m crying, but it’s just the memories leaking out a little bit. They’re not all bad y’know, but they’re also not all good.

There will be a lot of memories tomorrow, both made and remembered.

Some days the set backs are easier to handle.

Some days, my usual happy nature has darker, harder edges. When it’s all I can do to keep going.

The conflict of emotions is constant – forever grieving the loss of what might have been while no less loving the life, and the child, that is.

The sudden pang of pain at the reminder of limitations and dreams long since let go.

Some days, the fear of not being up to the job and of failing my son is all consuming – is there a therapy we haven’t learned about yet, are we doing enough physiotherapy/hydrotherapy/play therapy with him?

Are we making time to just BE with him, playing, reading together, being a family?

Some days, when the news isn’t good, you can feel the surge in strength from the very depths of your spirit rush up to meet you as you feel like you’re falling through the abyss.

It gets you upright, back on your feet, ready to ask what the plan of action is. Because there is always a Plan.

Some days I am just plain Mummy. My favourite title, and the role I have always longed to play.

There’s a little boy who looks at me and smiles and makes everything easier.

Every day x

UK Accessible Theme Parks

At Firefly, we know how difficult it can be for some Special Needs families to have a care-free family fun day.

Fortunately, across the UK, some theme parks are adapting to become more inclusive for all families, ensuring every child can have a fun day out.

Paultons Park

Paultons Park, and in particular, “Peppa Pig World”, was designed with disabled users in mind.

As such, the website claims this is why they don’t offer a discounted rate for carers.

The park, based in Ower, Hampshire does, however, offer free entry to guests who are wheelchair or motorised-scooter dependent.

Best of all – you can meet Peppa, George and more!

Accessible toilet and changing facilities are available and assistance dogs are welcome in the grounds.

The site also has a Queue Assist Policy, allowing priority access for guests who cannot queue in addition to wheelchair hire facilities, although these must be pre-booked.

If your child isn’t a Peppa fan there’s a 4-D cinema, stage shows, the dinosaur themed Lost Kingdom and much more – though it should be noted not all of these facilities will be appropriate for everyone.

One new feature, certain to delight everyone is Little Africa, where you can find meerkats, porcupines, lizards and more exciting creatures!

Gulliver’s Theme Parks

Gulliver’s Theme Parks have three different sites across England; Gulliver’s World in Warrington, Gulliver’s Land in Milton Keynes and Gulliver’s Kingdom in Matlock Bath.

One of the great boasts of these parks is their claim that queue times are always low due to the sheer scale of the parks.

This makes it ideal for guests who have difficulty waiting.

The parks still offer a, “Ride Access Pass”, for one guest and three other users. They are well versed in how helpful this can be to families, given the website’s declaration that 1 in 40 guests to the sites are on the autistic spectrum.

In addition, concessions are offered and there are online guides to help families navigate each location’s suitability.

Drayton Manor

In April 2007, a study from the National Autistic Society found that children with autism associate with Thomas the Tank Engine more than any other children’s character.

The study posited that the reason was the simplistic emotions on the faces of the characters.

In years since it’s been theorised that the crashing and smashing of the trains proves engaging, as well as the appeal of the organisational structure of trains.

No wonder parents of children with autism flock to Drayton Manor, which contains Thomas Land.

The park also offers an ‘Easier Access System’ and the service user can also be given a carer card which allows up to 4 carers up through the exits of your 10 chosen attractions.

Flambards

The great thing about Flambards, located in Cornwall, is that they offer free access to wheelchairs throughout the park. However, these are limited so booking is advised.

In addition to this, a fully adjustable changing table is located in one of their four accessible toilets.

Assistant dogs are welcome, and reduced pricing is available for carers and service users.

Pay attention to the website to see what attractions are open on certain days.

NB: All attractions are open during the summer.

Alton Towers

Alton Towers, perhaps, has the most comprehensive accessibility policy of all the UK sites listed.

The guide itself can be found on their website and comes to a full 27 pages! It leads visitors through entering the theme park, ride safety, ear defenders and hearing loops, the first aid centre and everything in between.

There is a diagram dedicated to the restrictions of each ride.

The accommodation at Alton Towers has also been thoroughly thought out when it comes to special needs, including buttons to turn off the colour changing lights and sounds in the lift in CBeebies Land Hotel.

Chessington World of Adventure

Similar to Alton Towers, Chessington World of Adventure also have an Accessibility Guide, which can be found on their website.

This goes through each attraction in the park and lays out the accessibility features in bullet points.

One wristband holding ‘Adventurer’ can bring along between 1-3 carers to use the Ride Access Pass.

These companions can be interchanged throughout the day.

There is a Changing Places toilet in the Pirate’s Cove area of the resort and wheelchairs can be hired.

You can upload documents onto the website as proof to get your Access Pass before you attend.

Thorpe Park

Another UK park with a jam-packed Accessibility Guide is Thorpe Park, and once again, it can be found on their website.

There is a table of information for each area of the park and every amusement’s level of suitability, including the number of steps needed to access each ride.

If you book your tickets online you can still get your free carer’s access, however this is only upon presentation of documentation at the site.

The park also has a Changing Places toilet containing a hoist, adult changing bed, height adjustable sink, shower and toilet.

Legoland Windsor Resort

Legoland proudly claim their site to be designed with the needs of people with disabilities in mind.

As such, they don’t offer discount for attendees with special needs, however, their carer will get free entry upon presentation of documentation.

The website contains a guide for accessibility including lists of rides and their suitability.

A wheelchair pass can be downloaded to the necessary party’s smartphone for quick access to rides.

There are also some wheelchairs available on a first-come-first-served basis.

The resort also encourages any families who feel they may need additional support to contact them before visiting.

Cadbury World

General Manager of Cadbury World, Gerrard Baldwin, is quoted on the website referring to the accessibility of the park; “We strive to offer an inclusive experience for everybody and regularly carry out reviews and risk assessments to ensure the expected high standards are maintained.”

Like many of the other parks on this list, Cadbury World offer free entry to essential carers and adapted amusements and seating.

The Birmingham theme park also has extensive parking in addition to a Changing Places toilet.

Visually impaired visitors are offered touch and feel opportunities throughout the tour, and hearing impaired visitors can take advantage of BSL interpretation screens as well as subtitled videos.

Barry’s Amusements

Barry’s Amusements is one of the gems of Co. Antrim’s North Coast.

Recently, it has joined the list of the amusement parks to add a Changing Places toilet.

That includes the height adjustable adult sized changing bench with hoist, a privacy screen, non-slip flooring and of course an adequate, clean and safe changing space.

It also has an Additional Needs section on its website providing information on their Ride Access Pass for those with social interaction issues.

Sandcastle Waterpark

Sandcastle is the UK’s largest indoor waterpark, and their commitment to accessibility is literally award-winning.

With Changing Places facilities, free water accessible wheelchairs, large print leaflets and menus, braille, videos with subtitles and audio commentary everyone can feel included.

Not only that the waterpark has an autism-friendly quiet room, offers familiarisation visits and a downloadable guide explaining all the sights, sounds, smells, tastes and touches you might experience.

The park also includes a queue fast-track policy and quiet starts for the first hour of every day, and ear defenders.

 

*Whilst all parks listed are accessible or autism-friendly, we advise calling beforehand to make sure the park will be able to cater for your family’s individual needs.

Time For The Summer Holidays

Schools are breaking up and the kids are getting excited – or at least some of them are.

The break from routine can be difficult for some kids with special educational needs.

So what is supposed to be (according to the Oxford Dictionary) ‘An extended period of leisure and recreation, especially one spent away from home or in travelling’ doesn’t always feel like it straight away,

Coping is generally more the idea than relaxing during most of the break from school.

Whilst most parents are glad when September comes back around, we find our lot have only just got into the routine of not being at school.

We then have a few weeks where it’s time to adjust back into the old routines again.

It’s often complicated by new classrooms or teachers, or both.

Next term David will be having packed lunch instead of school dinners so we will see how that works too.

But that doesn’t mean we’ve had a terrible break.

On the contrary, it’s about grabbing the moments when they happen.

Finding that period between the adjustments where the kids are happy and then working around what works for them.

Aiming for places that aren’t too busy – even if that means going on the days when it looks like it might rain.

This is especially the case for things like big attractions, beaches or events.

Going away to places where we can have our own space and own catering is really important for us.

Our kids need space to move about as David is very sensory seeking and Anthony’s ADHD means he is always on the move.

Fully inclusive buffet style eating does not work for us as we can’t leave our kids at a table and they can’t carry food.

They are unable to eat a lot of the food available due to restricted diets and we can’t leave them at a table so self-catering for us!

And while we may not seem to spend the whole holiday period ‘entertaining’ the kids and spend more time helping them adjust, it’s still a break from the norm and this in itself is something important for our autistic kids to learn to deal with.

Each year this adjustment period seems either a little easier or a little shorter and the ‘holiday’ period seems longer, and that’s something to be pleased about come September at least.

Parent’s Day

“Cameron do you think I’m a good mum? Do I make you happy?”

“You are the BEST mum I have ever been born from! – I love you”

I have many moments as a parent where I feel that I fail, that I am not enough or that I neglect my child.

The above comment though made my heart burst!

We are full time working parents and the normal hustle and bustle of everyday life makes me feel often that the weeks, months and years are passing me by.

My son will be going into his last year of primary come September and the memory of his first day at reception seems like a few moments ago.

During a working week by the time we are home in the evening I greet my child, ask about his day which is always minimal conversation on his part.

From there I must check his journal as during this year at school he has been struggling with some aspects of his behaviour and in order to address this I have been asking for a daily update.

This is a really challenging task emotionally for the both of us, Cameron is high functioning and conforms extremely well so I am quite firm with him that some of the things he has been reported as doing (ie: banging his pencil on the table or huffing when he is asked to do a piece of work he doesn’t want to) – are not acceptable and I will not tolerate them.

He knows that his evening treat or electronic device time will be in jeopardy.

It is difficult because I want to make him aware of his actions and that they have consequences but then on the flip side I feel that these are the by-product of his condition the few precious hours of the evening we have as a family are then tainted as I must discipline my child.

Something happened last week that gave me mixed emotions.

We have just been on a two-week holiday to Corfu, private villa where Cameron could be his loud quirky self and pure 24/7 family time.

When we returned home, Cameron said to his grandma “mammar you know what, I was pleasantly surprised on holiday – I thought my mum would tell me to use my inside voice a lot more than she usually does but she was really calm and hardly said it at all!”

Initially I was sad that my son must think I shush him a lot or get on at him for being quieter and using his inside voice, and the fact that he actually noticed I was more calm and relaxed.

I do not give him enough credit in the emotions and body language that he picks up on, when I have thought for so long with his autism it was one of his areas of weakness.

It made me so happy thought to know that he enjoyed our holiday and family time, that he felt relaxed and that he could just be himself – ultimately though that he felt that I was relaxed which in turn will have made him more at ease.

I know that there is not a manual and 10 years into being a parent, I myself am still learning everyday.

We need to be not so hard on ourselves because our children love us and happy children equal happy homes.

Parenting is Hard but it’s okay to Admit that

The 22nd July is a day dedicated to parents. It got me thinking about what it is like being a parent.

Before having children, I thought that parenting was easy. I thought that being pregnant and giving birth was the hardest part.

That I would magically have these wonderful children, that never fought, that ate everything I cooked for them and who were perfectly behaved. I just laugh at this now.

After having my first child though, I can remember sitting thinking that parenting was nothing like I had imagined but that for all the negatives the positives out weighed them a million to one.

My whole parenting life got turned upside down when we realised that my son had autism, and that my toddler has an undiagnosed condition.

Parenting was now on a whole new level of hard.

I try so hard to parent fairly, but how is that possible when my son needs everything equal and so much time spent on him to make him feel comfortable.

That he doesn’t get told off for having a meltdown and breaking and hitting things, he instead gets to play with the fibre optics and spend one to one time with me while I try and calm him down and then I try and figure out how to stop that meltdown happening again, yet his siblings would be told off for having a tantrum.

They don’t understand the difference and so it is hard to rationalise why I parent these behaviours different.

80% of my time is now at the hospital or having workers coming into the house to help me with my daughter.

Everything inside me is crying as I realise that I need extra help in caring my daughter and I am even being taught how to play with her.

These things should come naturally and yet as a parent thrown into the world of disability I have to learn to accept the help that is out there, and realise that actually although I have the mothering instinct of what is good and bad for my child, sometimes professionals really do know how to do certain things better, they also give a different perspective.

I fight for my children daily, and even the other day I was asked if I would change my children to be ‘normal’ and I stared straight into the persons eyes and said “no, I wouldn’t change my children, they are special and unique.

Would I change the world so that my son doesn’t feel so uncomfortable in it? Yes.

Would I change the fact that my daughter is in pain, yes, but I wouldn’t change my daughter”.

We are allowed to feel overwhelmed, we are allowed to feel stressed and that we are struggling, however we can not let that consume us.

We have to keep fighting, we have to keep going, as without us who else would push and fight for our children?

It is Parent’s Day

What makes a parent?

They are the comforters.

They are the sleep deprived.

They are the first educators.

They are the taxi drivers.

They are the schedulers.

They are the appointment keepers.

They are the referees.

They are the supporters, the number one fan.

They are the holder of secrets.

They are the memory makers.

They are the smile creators.

They are the chores givers.

They are the rule makers and rule breakers.

They are the knowledge holders of all things related to their child.

They are the advocates.

They are the wish makers.

They are the listeners.

They are the wisdom holders to most of life’s problems.

They are the huggers.

They are the fixer of broken toys, and sometimes broken hearts.

They are the worriers, the ones who wait up to hear you come in at night.

They are the nurses, doctors who know when an emergency is an emergency.

They are the ones who know how to make games out of nothing.

They are the imagination igniters, hoping the world around them will keep that imagination live and vibrant.

They are the hopers.

They are the dream encouragers.

They are there for many of their child’s firsts.

They want to be long gone for any of their child’s lasts, but some have no choice.

They are human and make mistakes.

They know how to celebrate you and all things you.

They know what makes you tick, regardless of how old you get.

They know your friends and your favourite TV shows.

They know you and all things you.

They are the parents; the ones you call when something good, funny, sad or bad happens to you …

To all you wonderful parents out there, whether you’re a step -parent or an adoptive parent, you are all doing a wonderful, often thankless job of raising tomorrow’s generation – have a beer, a glass of wine or even a cup of tea on this day, Parents Day!

When a Baby Comes Earlier than Expected

It all starts from when those 2 little lines pop up on a stick – you’re pregnant! (You even go buy a few more pregnancy tests just to make sure!)

You call and make your midwife appointment, you go on google and search everything and anything baby related, you join baby groups on Facebook and a birth board online for the date you are due.

You do everything you can to hide the fact you have started growing a tiny little human until that first scan.

You’re 12 weeks pregnant and you see your baby on the screen at your ultrasound for the very first time and feel emotions you have never felt before and plan how you’re going to share the news with all your friends and family.

You take all the right supplements and eat healthy along with drinking plenty of water (meaning plenty of extra toilet trips!) you google some more and start talking with your midwife of how you want to give birth, you dream of a minimum pain relief water birth while contemplating whether to breast or bottle feed.

No one mentions that you could have your baby early and not once does that thought enter your mind.

You’re not prepared, you haven’t packed a bag!

You’re getting rushed in for an emergency c section or getting steroid injections to try and give your baby the best chance possible at survival, the words “best chance at survival” words you never thought you would hear when thinking of your unborn child.

You have professionals surrounding you with so much medical equipment beeping while you’re being asked to sign something that you don’t have a minute to read.

And it’s all over in a minute.

Your baby is rushed away.

You’re put into a different room.

Suddenly it’s gone quiet…

You’re in pain and you don’t know where your baby is or if he’s even ok, you didn’t hear him cry when he came out so is he ok!?

Or did you hear him cry? You can’t quite remember, it was over so fast that it’s all a blur.

You think back to how you had seen social media posts telling you that yes, it’s painful but when your baby is placed on your chest it’s all forgotten but you didn’t get that…

Finally, someone comes to see you but they can’t tell you if your baby is ok, just that he is in intensive care and that’s all they can say right now.

But you HAVE to express. You may have never wanted to breastfeed but for your baby’s best chance at survival you have to try and get that precious colostrum for him.

There it is again, “baby’s best chance of survival”

You finally get to see your baby hours later but you’ll have never seen anything like it before in your life. This isn’t a baby surely?

He’s too small, there’s not an ounce of fat on him, his skin looks different and you can’t even see his face for breathing equipment.

Can you have a cuddle? Not yet…

Day 2, can you have a cuddle? Not yet…

There are things you can do to help though, trying to express as much milk as you can being the main one, even though your baby probably isn’t even having any yet down that tiny little tube…

You go home to an empty house, a quiet house, your hospital bag maybe half packed on the floor and a few baby bits that you had started to buy.

No matter how much you try to sleep, every time you close your eyes all you can hear is the beeping from all the machines surrounding your baby, plus you have an alarm set every 3 hours day and night to remind you to get up and stick a machine on you to try get some milk for your baby.

You feel guilt, sadness and almost as if the experience of having a new-born has been taken away from you, and then you feel more guilt again for feeling that way.

The hospital becomes your second home, where you spend more time at than your actual home, there’s nothing you can do there other than sit by your baby and doing his cares when it’s time.

When people think about premature babies they think of babies that are super cute because they are tiny!

The reality is so much different, there is a reason they are supposed to be in for 40 weeks and when they come earlier than they are supposed to they aren’t fully developed, inside and out.

There are so many difficulties and challenges that those tiny little bodies need to go through in order to survive.

When people say their premature baby is a fighter, they are absolutely right. They have been through so much without even knowing it themselves.

If your friend, family member or maybe even just someone on your online baby group has just had their baby prematurely, they might say they are fine and they don’t need anything but let me tell you right now, they are probably not fine, they need your support, they need your understanding, patience…

If you’re looking for a gift to give then hand moisturiser is a good one! As a parent of a preemie, you will never put so much hand sanitiser on your hands in your life!

Even just a hug (real or virtual!) to know you’re there for them if they need you goes a long way

The NHS Turns 70!

The NHS turns 70! It can be too easy to take some things for granted. Especially when they have always been there.

As I am only 27 years of age, the NHS has always been in my life.

It was there for me at my birth, it gave my parents the help they needed through health services, it was there for me throughout my hearing difficulties as a child and gave me all my medicines I needed growing up.

It was there for the accidents I had, the dental appointments I needed, and so much more.

Without a second thought, being a carefree child, I didn’t know any different.

Now in adulthood, the NHS has become my biggest life line, it has been there for my family and helped us through the most difficult times.

During pregnancy the NHS blessed me with midwives, specialist scans, MRIs, and antenatal care.

During labour it blessed with me a hospital bed, Midwives, Specialist doctors, aftercare, even more scans and food, water and shelter for my son and me.

This has continued throughout my son’s life. Without the NHS my son would not have the quality of life he now has.

He is under numerous hospitals with consultants specialising in Genetics, Neurology, Epilepsy, Audiology, Vision, Hips, Spine, Gastro.

He is under numerous community professionals such as Physiotherapy, Occupational therapy, Dietician, Community Nurse, Dental Nurse and SALT.

He receives specialist equipment such as home seating, a wheelchair, bed and sleep system, bathing seating, standing frame.

Not forgetting all the aids too, such as incontinence pads, gaiters, splints, neck support, and the feeding equipment and supplies.

I know I’ve missed some out here too, the list is definitely longer!

All of Zachariah’s medications have also come from the NHS. From Epilepsy, Reflux and Constipation meds, to antibiotics, to creams for infected skin and rashes.

On top of all this, the NHS has been there in emergencies.

Zachariah has been blue lighted into hospital on various occasions and received medical care from different Paramedics, Doctors, Nurses and Specialist Staff.

He’s needed the out of hours services too, for less urgent medical matters.

There isn’t a moment that goes by that we are not reliant on the NHS in some way or another.

Whether it be that Zachariah is accessing nursery using his wheelchair, being fed whilst visiting friends, sleeping at night time or being given medications at various times in the day, he is always using the services of the NHS.

Doesn’t matter where he is, who he is with, Zachariah needs the NHS.

We are thankful every single day as the strains of being unable to work are real, and the thought of having to afford all these gifts from the NHS is extremely worrying.

Even with a full-time job, we wouldn’t be anywhere near being able to fund all of his medical needs.

I don’t have figures, but I know that we are in forever debt to the NHS and will be eternally thankful for the life it has given my son.

A difficult life made easier by the services of the NHS.

But I am also aware of the strains the NHS are feeling too. I’ve recently watched TV shows that have highlighted how much the NHS is struggling.

It’s makes me anxious for the future of my boy. All I can do is pray that the NHS soldiers through and becomes stronger than ever.

Thank you to the past, present and future staff in every single role that keeps the NHS running. You are amazing!

But a special shout out needs to go to Zachariah’s Therapy team who have worked none stop with Zachariah since he was 4 months old.

He hasn’t given them an easy ride, I tell you, but they have been consistent in caring for Zachariah and given me the confidence to confide in them when I’ve struggled.

They are my heroes for sure!

The NHS!

Much Love,

Rochelle, My Daily Miracle

xxx