How Not to Parent: Summer Holiday Edition

It appears to be a double blind trial, I have no idea of the results, the purpose of the study, or which group I’ve been assigned to.

Foolishly believing I had firsthand experience in this area, with two older children, I volunteered, only to find that nothing prepared me for the special needs version.

I do not appear to be able to ‘withdraw from the study at any time’ which I’m pretty sure breaks medical ethics, but I’m not clear who I can complain too.

I offer this then, dear reader, as a template of how not to plan for the summer holiday with an additional needs child.

Look at Instagram. Behold the beauteous horde, resplendent in their immaculate houses.

Marvel at the amazing places they take their children on a daily basis. No Lunchables or MackyDs for these families, even the chicken nuggets are home made.

Keep them at the front of your mind. This is what your holiday can look like.

Remember all the improving therapies you should be doing with your child. I’m not talking about the maintenance stretches, chest physio or medications you already do on a daily basis.

You have a 6 week period of, ‘block therapy’, ahead of you.

I personally always start the holiday with two aims, firstly toilet training small person followed by teaching her how to talk.

Sometimes I write a structured plan to follow!

Remain positive at all times.

Remember the Daily Mail does not like, “Slummy Mummys”. Who are these ogres, I hear you cry?

Why women who sometimes find parenting difficult and attempt to use humour, honesty and peer support to get through. Do not be like these women.

It is imperative that you glide swan like through the summer holiday, and that you push any feelings of sadness, worry or failure, deep, deep down, and hide them with a well-made up smile.

I have followed these guidelines so you do not have to. You are most welcome.

I can tell you now that they are ill thought out, unsustainable and do nobody any good.

This holiday I aim to make sure we are all clean (enough) and fed.

I will smell my child’s head at least once a day. I will ensure the iPad is thoroughly charged.

We will meet up with some other parents who are in the same tribe and have a whinge, a laugh and some fun.

We will go outside and get fresh air, and also treat the Supermarket as an exciting place to visit.

I will not feel guilty that I hate swimming. I will lower my standards.

We will muddle through.

Oh. And I absolutely will not use this new list as a measure for success.

I wish you all the very best.

See you on the other side…

Will We Ever Be Out of the Woods?

There is comfort and contentment in resting after climbing an arduous mountain.

The mountain, in this case, was when my daughter endured complicated and painful hip surgery at five years old.

Bilateral Varus Derotation and Dega Osteotomies to be exact.

Congenital Hip Dysplasia is a condition that accompanies her rare genetic disorder, and these procedures were done in hopes of preventing early onset arthritis.

Once she had crossed over this great obstacle, gotten past the pain, healed and had finally overcome all the setbacks, we thought we were out of the woods.

She worked hard to recover and to regain the skills that she had lost. With time, she was crawling again and able to bear weight again in a stander.

While she has yet to take her first independent steps, together, we work hard towards someday making this dream a reality.

With mighty determination and strength, she took steps in a gait trainer, all by herself, 17 months after her a surgeon transformed her hips.

For a moment, the woods were far behind us.

We feared going back into the woods when she had to have the plates and screws removed, 10 months after the operation.

It was an easier procedure, and we knew going in that the recovery would be a breeze compared to the first time.

Nonetheless, the feeling of leaving your crying child in the arms of a surgical team is heartbreaking and terrifying.

Thankfully, she sailed through, fought like a warrior, and bounced back quickly the second time from the setbacks. Finally, we could move forward again.

This time, we brushed ourselves off, confident that we’d never have to trek through those woods again.

We met every post-operative appointment hopeful; and were always encouraged when everything appeared perfectly in place on the x-rays.

We would leave the surgeon’s office gleefully after each visit, reveling in good news.

The woods had become a distant memory, until our most recent post-operative appointment. The x-rays are no longer perfect.

There is yet another procedure she may have to withstand. While our surgeon is world renown and has her best interest at heart, we await a panel discussion of her case by other orthopedic professionals.

The decision of whether or not to have it done would be much easier, if we had a crystal ball.

Do we put her through more surgery if she may never walk independently? Do we put limits on her and deem it unnecessary?

My gut tells me we need to give her every chance possible, yet my heart aches at the thought of causing her more pain.

We have found ourselves right back where we were 18 months ago, scared and alone in the woods.

Parents of children with special healthcare needs and disabilities live our lives on a roller coaster.

There are many ups and downs, and surprises at every turn. There are thrilling, breathtaking twists and there are devastating, distressing ones as well.

As other parents on this path can relate, we know that we will never quite be out of the woods.

Therefore, we must learn how to survive there, and arm ourselves with all the right tools and resources, to help us make the best decisions for our children.

Just One Thing

It was an odd thing to be asked really, usually people prefer the lines of ‘special children are born to special parents’, ‘I’m sorry’ etc etc.

It was actually quite refreshing!

In the never-ending slog of school developmental therapy, physio, hydrotherapy and so on it can be easy to lose sight of the child at the centre of it all.

Sam can’t walk, sit unaided or support him own bodyweight, and yes I would love for him to do all those things; I have no doubt he will, eventually, but the one skill he lacks that I would do anything to help him develop is speech.

You see, Sam is NOT silent.

Far from it at times, he can chat away in his own manner quite happily. But they aren’t words, only sounds.

And while sounds are useful to a point, they aren’t as useful as being able to communicate clearly with speech.

Sam can use some makaton signs, although only very simple ones as he is hampered by his limbs not doing what he wants them to, but he recognises what someone is saying to him when they use makaton.

He can indicate yes and no easily, if not as consistently as I’d like, and he can use switches.

And if I ask him if he loves Mummy, more often than not I’ll get a little grin and he’ll turn his head into me for a snuggle.

I know he loves me, but I long to hear him say it.

I have dreams about him learning to speak, about him being able to tell me how his day went, of what his friends have been doing, and what he’d like for his tea.

Sam not being able to speak means I have to have complete faith and trust in those who care for him when I’m not actually there… he can’t talk to me if he’s feeling lonely, or is something has happened that he is upset about.

He does let me know, but there is only so much that you can convey through signs, facial expressions and cuddles.

I’m not overly bothered if my boy never walks independently, but I would dearly love to hear him speak and to know what his little voice sounds like as he tells me about his day.

Who knows, one day I might… but until that day comes I will continue to work with him and help him as best I can, in the hope that one day that miracle will happen.

Welcome to the Family

Have you seen children with complex needs out and about? Witnessed a small person with autism having a meltdown in public?

Have you inwardly recoiled, wondering how anyone can cope with this kind of life?

It looks distressing and messy. Maybe you thought “they must be really special to do that, I couldn’t”

And now it’s you. The thing you feared, maybe quietly expected, has been confirmed by the medical profession.

How will you cope, how do they cope? What will you do?

I’ll try and help you out. I myself have an accidental specialism in Special Needs parenting.

Unfortunately nobody bothered to send me on a career development course for this one.

Personally I believed I was better suited to a more glamorous way of life.

Despite ongoing reservations I have found out that it is possible to have an ordinary family life in the middle of an extraordinary one.

It takes guts, physical strength, emotional resilience, a sense of humour. Oh, and a functioning washing machine.

This life can be extremely isolating. At times you may find yourself completely alone and unsupported.

Please bite the bullet and seek out new friends in the same club. You won’t like them all, but there are bound to be people in your tribe, whatever it may be.

Marvel at their strength and revel in their support.

I laugh with other SEND parents harder and longer than with anyone else, and frequently about things that really should not be funny.

Feeling overwhelmed is normal. Denial is one of my favourite coping mechanisms. Take each day as it comes and don’t fret (easily said) about the future.

If sticking your fingers in your ears and singing Disney songs helps, go for it (possibly not in public!)

Your home will be filled with well meaning professionals. They will bombard you with appointments and information. You can pick and choose what to take on board.

This child is a member of your family, welcome good advice, but it’s still you who has to get up in the night and deal with sick/poo/seizures/feeds (delete as appropriate).

Believe me you will soon find out who you can rely on to go above and beyond the job description. Appreciate them, thank them; buy them chocolates at Christmas.

I won’t lie to you, newbie SEND parent; you are likely to experience depths of emotion that you never knew existed.

You will come up against children struggling to survive; some won’t make it. In one school year my then 6 year old lost three schoolmates.

You will see the bitter unfairness of life in all its imperfect glory.

It’s neither understandable, nor explainable.

I hope you find some comfort in remembering that those special parents you feared and revered had no training, no preparation no idea of what lay ahead.

They like you had different plans for the future.

Join the club.

Five Inexpensive End of Term Gifts

I have two children with additional needs so a LOT of people to buy for including taxi drivers, escorts, classroom support staff, teachers and Headteacher’s.

It can end up costing a fortune and feel quite overwhelming.

I remember when I was a teacher there was a limit to how many boxes of chocolates you wanted or how many bunches of flowers or bottles of alcohol you could fit into your car going home.

From helping in school now I know that the simple cards and hugs often mean more than anything of monetary value.

So I always encourage my kids to help. My son has no concept of gifts nor can he hold a pencil but I still encourage him to join in even if just a hand print.

Here are my five top ideas for end of term gifts that don’t break the bank.

1. A memory jar.

My daughter has loved making this for her teacher this year. We had a lovely time reminiscing about previous topics the class had studied, assemblies they had taken part in, new maths they had learnt and new children starting in the class.

I allowed my daughter to tell me anything…from the funny, to the cute to the seemingly insignificant but obviously important to her.

After a few nights we had over forty memories to fill in her jar.

I hope these bring a smile to her teachers face as she remembers back to events in the last year.

Total cost was £1.99 for the jar as we used our own materials to decorate and scrap paper to write the memories on.

2. A personalised bag.

Last year my daughter (and son even though he only scribbled) designed canvas bags for gifts.

My daughter wrote the names of those in her class and ‘thank you for helping me’ and we did one or two a night until we had enough.

For my son I wrote some personal things and allowed him free reign on the reverse to mark make as much as he wanted.

Even if the bag is just used at home it is still something my children made themselves and holds sentimental value.

Total cost was about £1 and bag and a few pounds for the pens.

3. A photo thank you card.

Make a little sign on A4 card or paper that says ‘thank you’ and get your child to hold this while you take a photograph.

Then get your child to help you make a simple card than says on the front ‘for all you have done I just want to say..’ with the photo of your child inside the card.

For my non verbal son I found this a lovely but inexpensive way to say thank you to the host of people it takes to look after him.

The feedback was lovely too.

Total cost under £1

4. Appreciation poster.

If you have access to a picture of your child’s teacher or helper (there maybe one on the school website or from class photos) print this out and stick it on a piece of cardboard.

Around the picture write things your child thinks of this person even if they seem so simple. My daughter wrote things like ‘I like her pretty hair’ and ‘she always wears nice clothes’.

It is always sweeter when it is the child’s thoughts but feel free to add anything you can think of too like ‘thank you for respecting my child’ or ‘you made my child smile so many times this year.’

It is simple compliments that can really make someone smile.

Don’t forget to add your child’s name on it so they remember who it was from or even add a little picture of your child at the bottom.

Total cost under £1

5. Make something with your child.

Bake a cake, paint pictures, decorate biscuits, anything your child enjoys that can be shared.

With a little clever wrapping even a simple cupcake can be made to look special and knowing it was made with love is priceless to any recipient.

Add in a little handwritten note and it will look even better.

Saying thank you is important.

Yes many will argue that those looking after your child be they taxi drivers, escorts or school staff are paid to do a job.

That is true but by getting your child involved at this time of year you are teaching them to be appreciative and thankful and more aware of others.

Sometimes the greatest gifts of all are those that come from the heart and involve more time than money.

Be inventive. Be creative. Say thank you with your heart.

Holidays Are Hard

Why is it ok for other mums to moan about the length of summer holidays but when I say anything it is deemed wrong just because my children are disabled?

There is no shame in admitting the summer holidays are hard.

Change of routine is hard.

Having no respite is hard.

Attending hospital when your other children are all off school and have to come with you is hard.

Lack of sleep is hard.

Dealing with meltdowns is hard.

Having to be nurse, therapists, teacher, entertainer and still cook and clean is hard.

Taking your child out in public is hard.

Pushing a wheelchair is hard.

Being isolated at home for so long is hard.

It is ok to have a moan. It is ok to feel overwhelmed and exhausted.

It does not mean you do not love or care for your children.

Never feel you have to be excited about seven weeks or more of having your children 24/7.

If your child or children were not disabled no-one would judge you for wanting a break or needing to vent so don’t struggle alone.

You are not alone at all. Hundreds of us are struggling with the same things.

We are struggling to take our disabled children out due to inadequate changing facilities in society. We are struggling to go out in public for fear our child will have a meltdown and everyone will look at us.

We are terrified of judgmental looks and comments. We are exhausted and isolated.

Keep going. This won’t last forever even if it seems like it right now.

Don’t feel you have to hide either. Brave the park, or the library. Try a museum for an hour.

It is not easy and I am right with you. I know how hard it is just to get outside your own door.

I know that everywhere is busy and noisy and the sheer amount of supplies you need for one hour is daunting.

Try. Even if you fail. Keep trying. Be brave.

Try being different like doing soft play on a warm day or the beach in Wellington boots? Go to the park before most families are awake or after dinner when it is quieter?

Remember it is ok to admit it is hard.

School offers routine and stability that for families with disabled children is vital. Respite is rare and expensive and not always even available.

Other families are not doing as well as you think by the way.

Facebook lies, Pinterest lies, your friends and family only share the good stuff. Remember that when you are having a bad day.

This will pass and school will be back soon. In the meantime plan some days out, make a picnic, be silly with the kids and breathe.

Whatever you do breathe…

This too shall pass.

You are not the only one struggling this summer and it is ok to admit that.

From one mum who is finding summer long and hard to another – we’re in this together!

I am Not a Fan of Holland

No, the Holland I mean is the poem “Welcome to Holland” (Emily Perl Kingsley , 1987).

When Sam was first in hospital and it was evident that life wasn’t going to pan out quite as we’d expected, it seemed to be the go-to item for people to send me, or to tell me about, or (worst of all) to quote from.

And I have more than a few issues with it.

The poem explains that having a child with a disability is like going on holiday to Italy, only to land in Holland.

First off, having a baby diagnosed with a disability, especially one you had no forewarning of, is not like landing in a different country.

It’s like being pushed out of an aeroplane at altitude with a parachute but no instructions other than ‘pull here’.

It’s like finding yourself not only in a different country, but a hostile desolate landscape devoid of life, trees, water (think Mad Max for suitable post-apocalyptic image)…

Once the initial shock starts to fade survival instincts kick in and you have to get up and decide which direction to walk in, without any signposts to help.

You just keep walking, and as you go you meet other people with the same bewildered, terrified look in their eyes.

You travel together, occasionally tripping or falling, but the rest of your ragged band of travellers are there to help.

And yes, eventually you arrive in Holland… acceptance comes but it isn’t a one way path; you revisit all those emotions of grief, anger, denial and so on as you carry on living.

And yes, this life has a wonderous amount of beauty and joy but it is also damned hard.

Don’t get me wrong, it’s not that I hate the poem; I actually think it can be incredibly helpful but for me it doesn’t do justice to the maelstrom of emotion that this life brings.

While life with Sam is all about loving the moment and loving the child we have (who is awesome), it is also about the high-speed ambulance race across town, long stays on hot, stuffy hospital wards praying for answers.

It’s having to abandon shopping in a trolley half way round the shops and just run, because a call to say he’s on his way to hospital from school just came.

Its about the usual parenting battles to give our boy has the life he deserves while juggling multiple appointments/consultants/hospitals.

Six years on since our world exploded, and I do feel I’m getting closer to Holland.

It is all the more beautiful for the trials it has taken to get here.

The Chosen One

I do it all the time, as I created a personal page for my son Oliver for all his accomplishments, medical updates, and even silly videos.

This helps people who want to stay involved do so, at a convenience, when life becomes hectic.

Usually when I share things I try to make it more so of the good things, rather than the bad.

And even though it may not look like it, there is always something I could complain about or share that isn’t sprinkles and rainbows.

That is just how life is. Especially when health and life isn’t always on our side.

But I always hear from our friends and family that I was specifically chosen to be Oliver’s mom because I could handle it.

That I always seem to have my ducks in a row, because I am in and out of therapies, doctor’s appointments, practices, and more.

This could not be further from the truth and I like to share that every now and then, because sometimes we can view people from afar and build an envy for how their life may seem.

We view these people and look at our own lives, thinking we can’t even make it through one day without a breakdown, yet here they are multitasking multiple kids and a million activities all while having dinner and laundry done by six.

That could be me on a very, very good and rare day, but that is definitely not my daily life.

I just try to take each day as it comes with three major check points for all my kids.

Are they fed? Check!

More or less healthy and in good shape (meaning no major injuries and have the same amount of limbs they started off the day with)? Check!

And the final one, do I have all three? Check!

As long as these are all accounted for, I can guarantee that you could visit my house any given time and find countless toys strewed across the floor, food and crumbs under the high chair and family table, and a dirty diaper or two that didn’t yet make it to the diaper pail.

I don’t always have my ducks in a row, no matter what it may look like.

Quite frankly, I don’t think anyone is 100% every day of their lives.

You just have to find a plan and routine that works for your own family and stop comparing it to others.

Birthdays – Celebration or Grieving?

Do we celebrate all that the year has brought; the triumphs, the highlights, the hard fought progress and victories?

Or do we grieve; mourning another year of lost possibilities, filled with sadness as we compare our own child to their same-age peers?

Maybe we do a bit of both, tasting the sweetness and bitterness together…

Last week was James’ birthday, he turned 15.

Apart from wondering where on earth that 15 years went, it was natural to mark the occasion, which he shares with me (the birthday, not the age!) with a few moments of quiet contemplation.

As James was tearing open his cards and gifts, oblivious to the significance of the day, I thought about what the past year had brought and what the year ahead might be like.

At this point I faced a choice… should I start by thinking about the positive things that the year had brought? Or should I focus on the harder stuff first?

I chose to be positive, reflecting on all that was worthy of celebration…

James has had another year in school, another year of good health, another year where he has generally been happy, contented and has been able to enjoy the things we’ve done.

He’s made tiny steps in his learning, but a little progress is better than none at all.

We’ve discovered new favourite places to visit, we’ve discovered new things to eat (admittedly, not all of these are actually food!).

James, as the ‘poster boy’ and inspiration for so much of the work that I do, has touched the hearts and encouraged the minds of many, many people to make a difference for the children and young people with additional needs that they know or work with…

In fact, the more I think about it, the more positives I can find to celebrate from James’ last 12-months.

Now that doesn’t mean there aren’t negatives; things that have become harder, more challenging, more of a struggle.

There are things that have brought me to tears, things that have woken me in the small hours of the night with worry, things that have left me feeling helpless…

But by thinking about all of the positives, I have come to realise that they breathe life into me, encourage me, build me up, drive me on for James, my family, and myself.

Thinking about the negatives, unless I can change them (which often I can’t), drains life out of me, knocks me down, demotivates me and holds me back, which is no help for James, my family, or me at all…

So I choose not to focus on the negatives, I choose not to give them fuel, to allow them to dominate me.

I choose positive inspiration, to celebrate the victories, small though they might be. I choose to focus only on things that feed me, encourage me, give me life.

To do otherwise is just a form of parental self-harm, dwelling on the things that have gone wrong, the things that aren’t possible, the things we can’t do.

I choose not to go there, and I choose ‘acceptance’…

Acceptance of our son for who he is and for all that he brings to our family; acceptance of what our life as a family is like, and celebrating it for all the good things that life brings.

I don’t love James any less for the additional needs that he has… in fact I love him all the more.

His 15-years of life so far have been inspirational to me and to us as a family; we are different, very different, as a result of having him in our family.

James has taught us acceptance, a deeper level of love, to celebrate difference, to care and campaign for the vulnerable, and much, much more.

My work reflects our journey with James, and I absolutely love it!

So next time it is your child’s birthday, or maybe on any other day, remember you have a choice; a choice of focussing on the positives or the negatives, a choice of acceptance or rejection, a choice of inspiration or depression…

I choose positive, inspirational, acceptance… I refuse to choose anything else… what about you?