A Parent’s Intuition

As a new parent to twin babies I felt overwhelmed, lacking confidence and second guessed every decision I made.

But despite all of that, I felt a mother’s intuition, I knew that something was wrong with one of my babies.

As time went on the intuition alarm that rings in your mind, fills your tummy with dread and body with unease grew.

Medical professionals put it down to a new mother finding her feet and wrongly diagnosed Dystonia and Seizures as silent reflux.

Yet I persisted.

I spoke to anyone who would listen and kept asking questions of those that should have the answers.

Finally after all reflux medications had made no difference and I approached my GP to discuss concerns about developmental delays, they started to take an interest.

It was years still until we made real headway in terms of diagnosis but along the way my mothers intuition has never failed me.

Spending so much time with my child gave me an impeccable knowledge of what was “normal”.

Anything outside of that was noticed immediately.

Sometimes this has meant that I have been on heightened alert for an impending seizure or illness.

Other times, that she is in pain but unable to tell me verbally.

Medical professionals now include me in decisions about care plans because I’m my child’s expert.

Always trust your instincts, as a parent you know your child better than anyone else on this planet.

Even more so when your child has complex medical needs, fight hard and never give up.

Can’t Put a Price on the Smile of my Special Needs Child

A wise woman I recently came into contact with described going on holiday with her special need’s child as: “An endurance test, but with different scenery.”

What she did when she said that to me was not only made me audibly laugh… but also absolutely hit the nail on the head describing a feeling I have almost every time we venture out of our house.

In a wider sense – it also described aptly the ongoing fight for services, equipment, and even just sleep; that so many of us desire.

Recently, as my child has grown bigger – I am finally starting to have to accept that actually… this isn’t getting any easier.

I realised that this year – if we want to go away anywhere for even just a couple of nights – that we will need a specialist solution to ensure that she is safe and secure in her bed.

As it stands, even our local hospital and city hospital are unable to provide us with a safe sleeping solution for Amy.

Amy has a type of cerebral palsy that I wasn’t aware existed until she came into our lives – athetoid, dyskinetic.

All day she thrashes, writhes rapidly, twists, extends, bounces… you would never imagine that someone labelled as “non mobile” could get herself into such dangerous predicaments and precarious positions!! With Amy you need to have eyes in the back of your head – 24/7.

If a piece of equipment can have extra straps and fastenings… she is your customer.

Any modification that can be added to make something more durable and safer… we need it.

We will also need spares… because they will be tried and tested beyond belief.

So, I started to look into specialist travel options for going away.

Previously, we naively bought an inflatable mattress.

We placed it on the floor between two single beds in an “accessible” caravan at a well-known UK holiday camp.

The next morning… to our surprise… she was nowhere to be seen.

She was inexplicably underneath one of the single beds… bashing and kicking her legs on the metal framework.

Obviously, I felt silly explaining how she acquired this particular set of bruises when she returned to school the next week.

The main thing that surprises me is not the cost – but the lengths you have to go to to prove your need for this equipment, and to get the funding.

A lot of items not deemed “necessary” to daily living like for example a wheelchair, will not be funded.

It is a luxury to leave your home for a few days, therefore not imperative.

Budgets are already overstretched so it’s easy to see why you’d be refused, but at the same time, we didn’t want to or ask to need this equipment.

Thankfully in this specific situation, the company I am dealing with is extremely proactive and obliging in terms of applying for grants for you and actually I am not having to make a huge effort for once to get this item.

So you can see our issue, and I am sure there are many others like us.

Feverishly applying for grants, hoping hard we get it… feeling bad that we need it… and worrying also that there are people worse off and that maybe we should be leaving available funds to them.

Prior to having Amy; in what seems an entirely different life – I worked full time in a call centre/office.

Every single day there would be someone fundraising for a charity… a marathon here, a mountain climb there… a parent who fundraises for a charity that helps their child.

Back then I was a bit bitter and didn’t fully understand.

In my ignorant mind, I had a mortgage to pay, student loans to pay off, a future to plan for – what even did these charities do exactly?

They didn’t help anyone I knew. They were just a daily inconvenience.

Dress down for £1? No, I’d rather have the £1 and be able to pay my gas bill. How wrong I was.

It’s funny how a situation can change your perspective.

I feel guilty for feeling how I did back then, and now I am that annoying individual, sharing fundraisers at every chance, donating to charity where possible. I see the difference it makes to people.

The additional cost of raising a child with a severe disability is astounding.

It is certainly not reflected in what we receive via DLA or carers allowance – hence the need for so many charities.

The gtube pads, the dribble bibs, the shoes for splints, the additional washing costs, the specialist “non foaming flavourless toothpaste”, the medical tape and dressings, the hospital parking charges, food whilst in hospital, and so on…. whilst on a lower income from having to leave work!

I never knew that someone with a severe movement disorder would have to raise almost £2k to provide a seat that was safe for them to use.

I didn’t know that if you wanted to sleep elsewhere you might need £4k to get a bed you feel safe in and won’t fall out of.

We take so much for granted.

But it’s true. Any venture outside of our home is an endurance test!

You never know what paraphernalia you will require for even a simple trip to the shops – never mind a holiday!!

For us it’s “have we got the suction machine? Is it charged? Do we have enough catheters? Do we have rescue meds? Do we have enough feed for this trip? Will we need meds, how long will we be? Do we have spare outfits? Is the iPad charged, do we have downloads ready? Are her splints on? Is she fastened securely?” and so on.

We have also come to learn that anything new we wish to try has to be expected to go wrong.

Otherwise we are destined for disappointment.

I’m not saying be pessimistic… but I am saying don’t get your hopes up… just in case.

For example, recently Amy has attended two pantomimes with respite.

The first one… she absolutely had a meltdown and had to be taken out.

The second one… they got through it.. but mainly by playing music on a phone to her, and repositioning her constantly.

Basically – anything I hope she will adore and find a treat – she may find to be torturous.

It saddens me massively and fills me with grief. All a parent really wants is for their child to be happy.

Amy is of an age where many things are still new to her. The world can be a magical place to an almost 5-year-old.

But it can also be unfamiliar, scary, and outright sensory inappropriate.

I am eternally grateful that our respite centre is proactive in taking her to new places.

Often, I am too anxious to take her, but also worried of “wasting” money that we don’t have.

She recently adored a bowling trip. Never in a million years would I expect this.

But yes. They uploaded a video (if you search Amy Rose’s army on Facebook you can find it) of her PURPOSELY concentrating hard to push the bowling ball down the ramp.

I have watched and watched that video and welled up with tears of joy every time.

It is those moments that we live for. Those unexpected events where everything goes well.

These are the reasons we persevere.

It’s the reason that we fight for what our child needs. It’s the reason I apply for those grants and seek out enabling equipment.

It’s the reason we work hard to find the balance with trying new things, and sticking with what works.

It’s what makes us these amazing, adaptable, versatile parents.

For all the times we’ve been knocked down, we have always dusted ourselves and got back up and come back fighting.

It doesn’t matter how bogged down we get, we will always get back up and continue the battle… because those smiles are more valuable than any piece of equipment you could ever ask for.

Helpful Hints for Hospital Stays

Parents and caregivers of people with special needs may spend a good deal of time in the hospital, unfortunately.

While this almost always proves to be a stressful time, I have learned a handful of tips that make hospital stays a little less stressful for the child in the hospital, the parent or caregiver at the hospital, and the rest of the family back home.

1. Prepare meals or ask for meals to be delivered

While hospital stays are not always planned, when they are, planning meals ahead can be helpful. One of our children recently had a major surgery.

In the weeks leading up to surgery, I cooked double when I made dinners.

We would eat one meal and I would place the other in the freezer to be used during the hospital stay.

This allowed me to worry less about if things were taken care of at home while I was with our child in the hospital.

We also let some friends know that providing meals not only during the hospital stay, but in the weeks, after would be a blessing.

It is also important to prepare food for the parent at the hospital to eat, as hospital food is not always provided or appetizing.

It can be easy to skip meals when you are focused on caring for your child, but this decreases your own strength and stamina.

My husband or I make sure to pack some of our favorite snacks and non-perishable meals to take with us.

2. Make documents/signs for the things you have to repeat

One of my pet peeves about hospital stays is how often I have to repeat the same information to different people.

Over and over again, medical team members come in and ask the same information about medical history, medications, etc.

Therefore, I have created a document for each of my children who have medical needs that lists their health history, birth history, past surgeries, diagnosis, medications, and any other information that is usually asked for.

At the top of the page, I list a few things about who the child is such as: “loves to laugh, super smart, loves The Grinch, communicates with eye gaze” so that staff are reminded to see the child for who he/she is and not just the medical needs.

I print off multiple copies of this document for each hospital stay and am able to hand it to each person who asks without worrying about getting the paper back.

Another way I use paper documents in the hospital is to advocate for my child.

One of my foster children is blind and staff almost always start working on her without speaking to her about what is happening.

I made a document that hangs over her hospital bed that says “Hi, I’m _________! I cannot see you but I can hear and understand you. Please talk to me about who you are and tell me everything you are doing. Please tell me if it will hurt or not.”

I made almost an identical sign for my foster son, explaining that he understands and loves to be talked to even though he is non-verbal.

These signs are a constant reminder to staff that these children are people who have feelings and not just medical needs.

When these signs are hanging over my children’s hospital beds, I see a change in how staff interact with them and I do not have to constantly narrate or ask each staff person to treat my children a certain way.

3. Say yes (and no) to visitors

When we have a child in the hospital, there is usually someone who offers to come sit with the child so I can get away from the hospital for a while.

I tend to come up with excuses to turn these offers down, as I prefer to be close to my little one at all times while he/she is hospitalized.

However, I have discovered that I love to have someone come sit with both me and my child at the hospital.

During our most recent hospital stay, my little sister came by with coffee and stayed for a few hours just to talk and be present.

It meant so much to me and I did not feel any pressure or anxiety about being asked to leave my child with someone else.

Hours upon hours in the hospital can feel depressing and lonely. Having a loved one close greatly lifted my spirits.

In the future, I will kindly say no to those who offer to sit with my little one when I do not feel comfortable leaving but I will also ask loved ones to come be present with both me and my child.

4. Don’t be afraid to be the boss

Before I became the mama of children who have medical needs, I tended to believe that doctors and other medical staff were always the expert and I had to follow their every recommendation.

However, I have learned that this is not the case. Rather, doctors and medical staff are one piece of the puzzle and members of a team that I am on as well.

As the mother of my children, I am the one who knows my children best and my opinions should be honored.

Near the beginning of our journey with children who have medical needs, some very dangerous decisions were made and life-threatening situations ensued because doctors did not respect my opinion (backed by fact and experience) in regard to my child’s needs.

Since then, I have learned to speak up and to do it loudly.

In the past, I felt as if I was in the way and had to ask permission to assist the staff. I felt self-conscious when I questioned what was being done.

Now, I feel confident jumping right in and asking about every procedure that is done, medication that is given, etc.

There have even been times that a wrong medication was about to be given and it was my questioning that brought the mistake to light.

While my involvement does irritate some medical staff, overall, the staff respond well and end up respecting me as they see that I am informed and will advocate lovingly and boldly.

I make sure to remember that medical staff are people too and I make a point of being respectful and kind.

My respect for them, as well as for my child and myself as a mom, creates an environment where my child can be well cared for.

5. Keep a notepad and pen handy at all times

Any medical parent knows that the number of professionals who come in and out of a child’s hospital room throughout the day is pretty crazy!

Add up a few days in the hospital and that is a lot of faces, names, titles, information, and care plans to keep track of.

I keep a notepad and pen handy at all times during hospitalizations.

As soon as someone walks into the room, I grab my pen and jot down his/her name, title, and some bullet points of what he/she said.

I also use the notepad to keep track of questions I want to ask and things I want to follow up on.

The notepad system is super helpful for making sure that everyone is on board with the plan and there is not contradicting information.

As a foster parent, this also makes it easier for me to document what is happening each day and send it into our case team.

6. Be intentional about activities you bring for yourself

During some hospital stays, I have had too high of expectations for what I would accomplish in the downtime at the hospital and have brought large amounts of work I wanted to get done.

As it turned out, a lot of the time my child was needing held, comforted, etc, and even when he/she was resting well, my brain felt fried and I had no desire to get work done.

On the other hand, there have been hospital stays where I did not bring anything but mindless activities and after hours of scrolling through social media or playing pointless games, my brain felt anxious and restless.

Instead of swinging to one extreme or the other, I now try to find a mix of activities to bring to the hospital.

I do bring some work with me, but with the expectation that if it doesn’t get done, that is OK.

I also bring a good book I know will engage me, some movies, and other activities that I know can give my brain a break but won’t leave me feeling like I wasted my time.

My main focus is my child and if I do nothing but comfort him/her, that is fine.

However, I do want to have a plan of how to use the times that he/she is sedated, sleeping, in surgery, etc, in order to reduce anxiety and boredom.

While we all hope that yet another hospital stay is not in the near future, I hope these tips prove helpful when the need arises.

The Loneliness and Isolation of Special Needs Parenting

I’m in another hospital waiting room with my son watching him in the small children’s area as we wait for his name to be called.

No-one speaks to anyone else.

The silence is only broken by the odd cough or child’s cry.

I am pretty sure I am not the only lonely parent there. But no-one even gives eye contact let alone says hello.

My child gets transported to school.

I don’t know the names of the other children in his class even though there’s only 8 of them, neither would I recognise his support assistants if they passed me in the street.

Going to anything in the school is not only physically difficult due to the distance it’s also highly distressing and confusing for my son if he sees me in the school environment.

There is no contact with other parents, no community I can join, not even a Facebook group.

When I collect my son for appointments he’s escorted to the office to meet me with little more than a ‘see you tomorrow Isaac’.

Communication is by short basic sentences in a diary. Sometimes there is no communication at all even though my son is non verbal.

It’s a very lonely and isolating place to be as a parent.

I took my son to his favourite soft play. While other parents pulled tables together I sat alone watching others look quizzically while my ten year old flapped in the ball pool, alone but happy.

My son has no friends we could meet up with.

Outside of school he goes nowhere because he can’t cope with changes to his rigid routine and because we need to be home for food and medication at set times.

In school holidays I can go weeks without seeing another adult or having adult conversation.

That’s incredibly isolating and lonely.

I walked round the supermarket the other day with my son with me. He refused to use the Firefly GoTo Shop trolley, which was fine as I couldn’t find it anyway.

I’m pretty sure there where people in that shop who knew me but actively avoided me.

One person once tried to say hello in the supermarket while I had my son with me but his high pitches screaming and agitation meant the conversation never got beyond the ‘hi, good to see you’ part.

I so wanted to have a longer catch up!

I longed to hear how their family was doing and listen to their news.

It just isn’t possible unless I don’t have my child with me, and then others are at work or busy.

I left the shop feeling more isolated and lonelier than ever.

My child never goes out to play with other children. He’ll never be part of a football team or a chess club.

He’s never even had a play date. Even family need amazon wish lists because they never see him to know what he likes.

People don’t pop by to visit and they definitely don’t phone.

It can feel like I am invisible sometimes.

When my child wasn’t meeting milestones, when he started developing medical issues, I knew life would be a bit harder.

I expected the myriad of appointments and meetings. I got used to the form filling and fighting for his rights.

I am immune now to the stares and the tuts.

But years into this special needs parenting life and I still struggle with the absolute isolation and loneliness of it all.

That for me has to be the hardest of being a mum to a child like mine.

I’m a Therapy Mom

I’m a therapy mom.

I shuttle my 5 year old to private therapy three days a week after I pick him up from kindergarten.

He has had occupational, physical, and speech therapy multiple times a week since he was 5 months old.

I have spent hours upon hours motivating him to reach just a little farther, stand a little longer, and hold his head up higher.

We have a therapy home.

Our home is filled with equipment; standing frame, walking ladder, balance balls, benches, the list goes on. We also have countless sensory items as well as cause and effect toys.

If our son responded to a toy at therapy I scoured the second hand shops or garage sales for that specific toy to have at home.

I could probably run a therapy facility out of my home with all of the items we own. No joke, we have it all.

We are a therapy family.

We take our son thousands of miles away once a year for an intensive therapy program.

We spend thousands of dollars and hours of time for him to participate in a program where he has therapy five hours a day for three weeks.

Our other boys either travel with if we have the help of grandma or they stay home and miss mom for nearly a month.

My husband always stay home to work and care for everyone while I’m away, living in a hotel and watching our son work his tail off day after day.

I do all of this because in the back of my mind is always the question “am I doing enough?’

I think every mom can relate to this, whether you have a child with significant needs or not.

We are always questioning our decisions and choices for our children, but when you have a child who is severely developmentally delayed you seem to question every single thing.

I have always pushed our son because I don’t want any regrets.

I want to look back and know I did everything in my power to help him reach his full potential.

With tears streaming down I know why I do this. I don’t want to fail.

I don’t want to look back and think I failed him.

I want him to know that I tried. So damn hard.

I tried.

Oh how I wish I could see into the future and know if what I am doing is right.

Because there is the other question I ask myself, “am I doing too much?”

You see, there is no “if you do ‘this’ your child will achieve ‘this’ in life.

There is no predictor of anything and the only thing we can do is try.

It is so incredibly hard to have confidence in making the “right” decision.

But I do know that no matter what we do and what we don’t do doesn’t mean we either fail or succeed.

If our son crawls. Great. If he walks. Miracle. If he talks. Life changing.

We will always try. We may re-evaluate priorities from time to time, but we most certainly will never give up.

The Unexpected Joy of Writing

In this modern world it is relatively normal for people to share a lot about their lives on the internet.

Writing and sharing about our journey raising a child with special needs is no different.

I have always enjoyed writing but it wasn’t until our daughter was diagnosed, with a rare syndrome and autism, that I had a reason to.

It all started when I set up a Facebook Page called Simply Isla.

I did this to share pieces of interest about this new unexpected world of special needs.

This way Facebook friends who had an ongoing interest had the choice of following the page to learn more.

I initially started writing (or blogging) to report our progress when Isla got her assistance dog Bo.

Those who supported us during the process of fundraising for Bo were really interested to read how they were getting on.

I enjoyed writing so much that I continued and started to share more of our experiences.

I created the website www.simplyisla.com as a more accessible platform to help and educate others.

Blogging what I am learning along the way raising Isla has brought some unexpected benefits.

Is an outlet for me

Once I start writing it can be quite surprising what direction it takes.

I may start writing on a certain subject which then takes on a whole new meaning as I analyse what I am feeling.

By organising my thoughts on paper I find I feel less overwhelmed. It is very therapeutic.

I encourage everyone to write their feelings down. When you are struggling with something even if you have no intention to share.

It can really help bring some clarity.

Has been a help to others

Isla is a girl with a rare syndrome and autism.  Medical practitioners are unable to tell us what to expect next and this can make you feel very isolated and alone.

Our greatest resource as parents is reading about the experiences of others. Often we can relate or learn things from parents going through the same thing.

Sometimes someone may be able to put into words what we are feeling or explain things in a way that is easier to understand.

We can also use this information to share with other people to educate and create more understanding.

Parents often tell me that I have helped them by writing my posts and that is really heartwarming.

I learn a lot 

I always research when I write to make sure I have my facts correct.

By doing this I have actually learnt so much. Sometimes by reading more on a certain topic I have changed my opinion on what I previously believed.

It also has taught me the meaning of a lot of the terminology that is often used when describing the deficits that Isla has.

Education & Knowledge Creates Awareness & Acceptance

In this new age of increased tolerance of differences, it is a perfect time to educate others about those with disabilities.

I feel it is my duty as a mother to help this cause.

By speaking out I hope there will be more acceptance and opportunities created for our little people to integrate into society when they are adults.

However while it is exciting reaching people, sometimes I feel a little embarrassed meeting people face to face who have read my deepest thoughts and insecurities.

Creates a sense of community and support

A lot of people use Social Media as a place of support when going through a tough time. Or to celebrate events or to share experiences.

Whether it is right or wrong, real life or not, I cannot deny getting feedback is satisfying.

Having your feelings validated, progress celebrated and having conversations when feeling isolated makes me feel good.

Now Isla is older she loves to read peoples’ comments on her photos and it makes her feel special.

Have a purpose

Being unable to return to work in full capacity it is nice to feel like I have some sort of purpose. By writing I feel like I am using parts of my brain that haven’t been used for a while.

Being in this technological age is definitely a helpful time for special needs parents to make our world a bit smaller, get support and be supported. For that I am grateful.

When the Seizure-Free Stretch Comes to an End

When my cell phone rings during the school day, and I see it’s a call from my daughter’s school, my heart always leaps into my throat.

On December 20, as I quickly answered the call, my heart instantly sank.

After being seizure-free for 165 days, she had gone into a Grand Mal at lunch time.  Panic immediately set in.

Even though she was in the BEST of hands, and I was assured she was fine, I felt my chest squeeze tightly as I ran out the door to get to her.

I hadn’t needed to write an entry in her seizure journal since July 5.

There had been no need to note the type, duration and characteristics of a seizure.  We had not been victorious for such a stretch in a very long time.

After five months, I had started letting myself relax a little.  You tend to become a bit more complacent, despite knowing the threat of Epilepsy rearing its ugly head is always present.

I read a quote recently that absolutely, perfectly describes what it’s like having a child with Epilepsy.

“Knowing that a seizure could strike at any moment is like having a stalker.”

They are very unpredictable, and often sneak up with no rhyme or reason.  Those random ones often feel the most defeating.

When my daughter is sick or running a fever, we are on high alert; ready to spring into action should one hit.

When they strike out of nowhere…at school, in a coffee shop, in the car…with no warning or precursor, it abruptly knocks us out of our confident comfort zone.

It’s tragic enough that it takes such a toll on the individual, but Epilepsy is a disorder that affects the entire family.

Since my son was ten years old, he’s known what to do in the event that his sister were to have a seizure.

One too many times, I’ve had to shout for him to start a timer, grab the oxygen tank, dial 9-1-1, call his dad, and even open the door for the Paramedics.

No child should have to deal with something so scary; feeling such worry for a sibling.

My husband and I are afraid to leave her for long periods of time, and feel the need to always be with her.

The “stalker” is always looming.

As crushed as I am when the seizure-free stretch ends, I cling to the optimistic hope that we’ll make it even longer this time around.

I am grateful for every day that I don’t have to make an entry in my daughter’s seizure journal.

I am thankful watching her make developmental progress, without having lost any of the skills she’s attained.

As the clock starts over, we do all we can to keep her safe and to be prepared.

We keep our guard up and wish for our greatest stretch yet.

Happiness in the Dark

Would it surprise you to hear that our lives are very happy, full of laughter and fun?

While its no secret that special needs parents grieve for the child they thought they had, I’m not sure the rest of the parenting world understands the joy that coexists with that grief.

When we found out about Sams disabilities, we mourned the loss of the life we’d planned with our son.

Almost 8 years on, that grief is still there.

But it is shadowed by the love and pride we have for our amazing, strong willed little boy.

Let me tell you a secret; grief and love aren’t so different. As a SN parent the highs are exhilarating but the lows are crucifying.

I will never forget seeing my son use a power wheelchair for the first time with tears pouring down my face, totally unaware that I was crying.

The joy we felt that day was out of this world. THAT’S the kind of high I’m talking about.

But the lows are utterly brutal; the despair and helplessness you feel sitting by your child’s hospital bed, begging God for the seizures to just stop, the Consultant gently explaining that we won’t know what damage this latest episode has done for some time.

I would do anything to trade places with my son in that moment.

To offer my life, for his.

If all you ever see and hear about are the lows, you would be forgiven for struggling to see the joy in our lives.

Believe me, these kids are superheroes. Their courage wears off on you, and their determination to live and their love of life is infectious.

They teach you what really matters; reading a bedtime story together, snuggling on the sofa watching TV, reading their school progress reports with so much pride you think your heart will burst.

We’re really no different to other families, we just have a few added extras.