Enough

Enough? That’s the biggest question for me. Am I doing enough? Did I do enough today? Had I done more a year ago would he be in a better spot? My personal biggest struggle is trying to divide the line between living life and keeping a schedule.

Do I let myself feel guilty if we are outside playing all day and Sawyer doesn’t get his stander or normal physical therapy? If this happens too many times in the summer, am I setting him back?

What is enough?

These worries are always in the back of my mind and it can be stressful. I am sure that I am good at hiding the guilt that I feel and the worry on my shoulders, but it’s there. It can’t be healthy for me to carry that burden; however, I think many mom’s do.

We are constantly carrying the mom guilt and wondering if we are doing enough for our children. When Sawyer’s nurse is here for the day, I feel relief knowing that I can just be mom, but is that wrong?

Recently I hurt my back. The pain was extreme, and I could not lift. There were a few days that I was on my own with both kids and Sawyer didn’t get any physical therapy and spent a good portion of the day on his back. There is nothing I could do about that because it hurt me to move so I wasn’t able to move him.

Yet, I still worry that he didn’t get enough therapy and if I remained diligent and consistent then maybe his outcome would be different. I hear so many success stories about kids who weren’t supposed to walk.

I have heard from doctors that “highly motivated parents have better outcomes for their kids”. What does that mean exactly? Am I highly motivated?

I advocate for him on a daily basis. I live and breathe thinking how I can make his life better. I know these things but my fatal flaw is feeling that I can always do more. Internally I often forget to remain positive and focus on what I am doing.

This is something I will continue to work on because I need to be my best in order to give my best.

What is Inclusion?

We have all heard that word “inclusion” and it’s something I talk about quite a lot, how much it matters and how important inclusion is.

But what actually does it mean?

Well, if you were to google it, it would tell you It is “the action or state of including or of being included within a group or structure” But that doesn’t really tell us much does it.

That definition makes it sound like such a simple thing but what usually happens is integration and the two should not be confused because there is a big difference!

You may think that by doing something at the same time and the same place is inclusion, but when something is made different for someone with disabilities for example, then this is integration. Inclusion would be including all members of society, regardless it is about any disability, poverty, or social, ethnical and religious background, etc. And not making it different for them but making it so everyone can join in with the same activity.

Yes, things will need to be in place to allow everyone to take part sometimes but what can sometimes happen is that it will seem like hard work, take longer and too much effort so it just doesn’t happen, which is really pretty sad.

Attitude can be one of the biggest barriers of inclusion, like I just mentioned – it can be easy to think that being inclusive is too much of an effort so why bother right? Something I ALWAYS do is imagine myself in another person’s shoes, how might someone else feel in a situation where they can’t get involved or do something they really want to do, how would you feel if you went somewhere with your friends but had to do something different because it wasn’t accessible for all.

It imposes the question of why should an individual be left out because they are different?

The truth is – we are all different and that’s what we need to realise! Create access and clear communication and inclusion really can be easy. This doesn’t just apply to schools and sports clubs but to everyday situations.

So have a think, what can I do to be inclusive? How could I promote inclusion? Make a change. Raise awareness and make every individual happy and able to have friends and do the things that they have a right to do.

Balm for the Soul

It’s pretty much impossible to get away from current events – even with the TV and social media being avoided, signs of how different life currently is from the usual are everywhere.

One thing I am eternally grateful for, now more than ever, is my garden.

The garden was one of the main reasons we fell in love with this house; when we arrived it was mostly just lawn, edged by mature trees and an enormous laurel hedge.. now, its home to our flock of chickens, two ponds, raised bed vegetable garden and around 12 fruit trees!

Safe to say, it is my retreat when times are tough and a space for me to go and sit, listen to the birds, and chat to my Dad (who was a superb gardener, font of all garden wisdom and who passed away 3 years ago.. but in the garden he’s always here).

As lockdown starts to really bite – we’ve already been isolating since the first week of March due to Sams health – the calm and wellbeing I feel when I’m pottering amongst my plants is pure bliss.

When the weather is rubbish, I have a huge number of houseplants which serve the same purpose. There is something reassuring about how nature springs back to life every spring, previously bare branches suddenly covered in blossom and new leaves, daffodils flowering and the increasingly loud birds. Our two ponds are absolutely swarming with tadpoles and frogs, Sam thinks this is absolutely brilliant even if Daddy is being mean and won’t let us set up a small fishtank so he can watch them transform into tiny frogs..!

Yes, life is very far from normal and will be for a long time yet.

I’m getting to spend hours of quality time with my boy, planting seeds, taking him in his wheelchair down to the ponds to see the frogs and tadpoles, and finding out which flowers he likes/dislikes. He in turn is loving having both parents focusing on HIM.

Life has slowed right down. All of us are missing friends and family, his Grandparents especially; but how lucky are we to live in an age where technology allows us to connect easily with others?  Hopefully, when all this is a distant memory, we’ll remember live life at a slower pace and to make more time for the people in our lives. If this experience teaches us just one thing, I hope it’ll be to appreciate our friends, family and neighbours, and to learn when to let things go.

Baking in Lockdown

I don’t know about you, but we are all getting a bit stir-crazy in our house…

The weeks of lockdown due to the coronavirus pandemic have just seemed to go on and on.

My four daughters have been out of school since March 16th, almost 2 whole months now L

This is hard on us all in different ways.

My eldest daughter is 15 and she’s an independent and avid baker. Her favourite treats to bake are cookies and brownies J It’s been really sweet to see her taking her little sister with complex needs into the kitchen for some “baking time”.

She sits Brielle up at the kitchen table and gives her a wooden spoon to keep her busy whilst she gathers the ingredients. This tactile and sensory activity is SO good for Brielle as she stirs ingredients, feels the batter, counts muffin liners in the tin, investigate different textures and colours…

To date in lockdown, the girls have made choc chip cookies, almond-butter cookies, apple crumble, brownies, banana blueberry muffins, pumpkin spice muffins and molasses ginger cookies.

It’s really lovely as sometimes all four sisters will get involved.

I love seeing the smiles all around and them working towards a common goal despite their different abilities and personalities!

They are so gentle and patient with Brielle too. She absolutely adores her big sisters and loves being involved in EVERYTHING! I honestly wouldn’t know how I would keep her entertained and happy without the older girls!

Some tips I would suggest if you or your kids would like to get doing some baking in lockdown:

  • Encourage your child’s creativity and consider what makes them the most excited and motivated? You could do some themed cookies or muffins if it’s a particular role model they adore.
  • Work off your child’s tastes and preferences- do they love chocolate, or love bananas? These are so easy to incorporate into many treats! Make something they are likely to enjoy eating!
  • Give your child support but also give them some autonomy and space while they are mixing, measuring, etc. Let them have fun in the process!
  • Enlist the help of older siblings if possible. It can be a really special bonding time for siblings and also you may get the opportunity to take a cuppa & quiet few minutes for yourself!

Lockdown Groundhog Day

When I woke up this morning, the first thing that struck me was that I had absolutely no idea what the date was or even what day of the week it was. No clue. Next I realised that I’ve experienced that feeling every day over the past few weeks during lockdown, as I’m sure many of you have too. Every day is the same. Every day just flows like a repeating pattern into the next day which is the same, and the next, and the next… We’re living in the film Groundhog Day.

As I eventually figured out that today is Wednesday 6th May today (as I write this), and I headed to my home office for another day of Zoom and Skype calls, writing, juggling work and family duties, remembering to get some fresh air and exercise at some point, I was reminded of a quote from Bill Murray’s character, Phil Connors, in the film ‘Groundhog Day’… “This is one time where television really fails to capture the true excitement of a large squirrel predicting the weather.” OK, maybe not that quote, maybe it was this one… “Well, what if there is no tomorrow? There wasn’t one today.”

Bill Murray’s character was really unsettled by what was happening to him; he didn’t understand it, and the film, although a comedy, actually explores some very dark themes as he tries to come to terms with what is going on. It reminded me that many children and young people with additional needs are really struggling to come to terms with what is happening at the moment too, including that lockdown means that every day is the same. Will there ever be an end to lockdown? Will there ever be a tomorrow?

We can help them to cope better with these difficult days by helping them to understand a little of what is going on, as well as helping them to navigate their way through each day.

There are some great resources that people have prepared and shared to help with this, including these tools that explain why school and other places are closed, planners to help them understand each day, and a resource to help them to share how they are feeling:

School is closed social story, created in Widgit by Breezy Special Ed, explaining why school is closed:

Our day at home downloadable activity planner, created in Widgit by ReachoutASC, providing a tool to visually communicate each day:

‘Our Day At Home’ planner – Our-day-at-home

And here’s another planner template from Take 5 And Chat:

There is also a Widgit resource to help children and young people explain to adults about their feelings:

Many more resources are available online through the Additional Needs Alliance website, head here: https://additionalneedsalliance.org.uk/information/ then click on ‘Resources’ and ‘Our Time At Home’ for a wide range of activities, crafts, information and more.

I hope that these resources will help you and the children and young people you journey with to cope better with these difficult lockdown days. As Bill Murray says in ‘Groundhog Day’… “Something is different… Anything different is good!”

OK, maybe not that, how about this conversation between Bill Murray’s character ‘Phil’ and Andie MacDowell’s character ‘Rita’…  (Rita) “This day was perfect. You couldn’t have planned a day like this.” (Phil) “Well, you can. It just takes an awful lot of work.”  Hopefully the tools and ideas mentioned in this blog will mean that you can have as perfect a day as possible every day, without it needing an awful lot of work, and without it always feeling like Groundhog Day!

Peace,

Mark

Image rights: Header © Columbia Pictures

Lack of eye contact doesn’t mean my children are rude

People are so quick to judge my children. When people talk to them neither of them reply. (One is selective mute the other nonverbal) even worse, to many people, they don’t even look at people when they talk to them.

For some reason people understand and accept that the children won’t, or can’t, speak to them but they find the fact that they won’t even look at them so much worse. Even other children, usually naturally more accepting, find the lack of eye contact a problem and walk away from my child because they assume they are not interested in what they are saying or doing.

As a society we put so much emphasis on eye contact: It shows joint interest, connection, emotion and understanding. It’s a sign you are paying attention, care about the person, following instructions and showing respect. So many, conversely, see lack of eye contact as rude, ignorant, dismissive, or even a sign of guilt.

Lack of eye contact is so misunderstood.

My children do care, they do connect, they do hear. Hearing after all is to do with your ears not your eyes! Understanding happens in the brain not in the eyes. Connection and bonding can happen in many ways and doesn’t need eye contact either…if it did then texting and phone calls would never be popular ways to connect. Respect can be shown in much deeper ways than eye contact. My children aren’t guilty just because they won’t look at you.

My children are autistic and eye contact doesn’t come naturally to either of them. They do give me eye contact at times but it’s never something I insist on. My son can’t explain why eye contact is difficult for him but my daughter says it makes her whole body tremble, she feels threatened and it becomes all-consuming meaning that when she looks at someone in the eye it overtakes everything else and means she can’t hear them, she can’t remember where she is, and she can’t think right. It’s so disconcerting for her that she says it’s like being pulled by a magnet so strong she can’t move. It paralyses her. It freezes her and prevents her mind and body functioning.

I can’t imagine how terrifying that must feel. Why would I want anyone to feel that way?

Yet so much of life relies on eye contact from interviews, to meeting friends, to being taught, to buying something in a shop. Many would insist I am holding my children back by not getting them therapy or teaching them skills to ‘fake’ eye contact so that they can ‘fit in’ better in society.

To me that’s like telling a zebra he must stop being striped because he doesn’t ‘fit in’ with the other grassland animals!

My children are exactly who they are, and I strongly believe it is society’s place to be more accepting and NOT my children’s place to make themselves ‘not autistic’ to blend in more.

So, I am on a mission to highlight that eye contact, or lack of it, isn’t ignorance or rudeness. It’s not lack of interest or even disrespect. It’s definitely NOT guilt.

Eye contact is fearful, overwhelming, terrifying and unnatural for many autistics.

Lack of eye contact doesn’t mean my children are rude…it means they are autistic and they need acceptance not judgement.

Please be more understanding if someone doesn’t look you in the eye. Imagine how terrified they feel and ask yourself: do you really want someone to feel that way just because of some social rulebook? I know what my answer to that is.

18 on the 18th

He turns 18 on the 18th of May.

It was April 2008 when they told us our little boy would be lucky to see his 12th birthday.

Now, approaching his 18th birthday, I can’t help but think of the things the doctors were afraid to tell us to hope for.

Doctors, you see, can really only deal with facts for fear that if they give you too much hope you could, I suppose, blame them in some way or other for hoping things would be different.

Our diagnosing doctor gave us hope but with a big side of reality. He reminded us to spoil our son while we could and to hope that one day a cure could come his way. He reminded us (regularly) that our son was doing well considering all the other complications other boys had at this stage of the disease.

So, we have lived these past 12 years since diagnosis, always looking for the ray of sunshine in our son’s life and ours.

We read less and less about ‘cures’ and treatments as our son’s condition has now progressed to the stage where the basic treatment no longer works – but that can be  kind of freeing – it means less needles, less hospital visits, less appointments, less assessments, less studies…less everything really. It also means our son no longer screams when the hospital building comes into view. It also means we no longer have to insist a doctor take off their lab coat due to our son’s reaction.

Our world changes in accordance with our son’s condition. What do I mean?

Well, our son was a typical child up until he wasn’t. I can remember the exact moment in time when I knew something was very different about our son, he was just 18 months old. He woke up one morning and seemed to forget how to play with his favourite toy, one he had played with the night before without issue.

I knew then that our world was going to change, I just didn’t think it would be ever changing.

I’ve been the mammy to the wild child, one that knows no safety and likes to touch absolutely everything and everyone in sight.

I’ve been the mammy to the ‘bold’ child, the one with the ‘made-up’ diagnoses of ADHD.

I’ve been the mammy to the child who is Autistic.

I’ve been the mammy to the child who has Sensory Processing Disorder.

I’ve been the mammy to the child who is ‘too big to be a buggy’.

I’ve been the mammy to the child struggling in mainstream school trying hard to fit into the round peg, when he is more of a rectangle, square, triangle peg!

I’ve been the mammy who’s had dirty looks, tuts and been given advice on how I should parent better.

I’ve been the mammy of the child no one wants to play with.

I’ve been the mammy to a child who wore pull-ups for far longer than expected.

I’ve been the mammy of the child who uses bad language and then runs off.

I’ve been the mammy to the child who is kicking and screaming in the isle of Tesco because he can’t understand that he’s to wait in a line.

I’ve been the mammy denied help and support because my child didn’t fit into certain boxes.

I’ve been the mammy who’s child ‘looks’ fine.

I’ve been the mammy who has had to apologise when my child hits your child.

I’ve been the mammy who gets no sleep.

I am the mammy who learns to adapt as a condition takes hold of the same child who once told a priest to ‘hurry up with mass’ who now, can no longer speak.

My world is forever changing.

I am now the mammy to a nonverbal child.

I am now the mammy to a child who uses a wheelchair.

I am now the mammy to a child who can no longer be left alone for any amount of time.

I am now the mammy who gets some sleep but does weeks without it.

I am now the mammy to a child who needs two people to help dress, wash and change him.

I am now the mammy to a child who uses a peg to eat when he’s unwell.

I am now the mammy to a child with complex care needs and physically disabilities.

Yes, my world and my views on situations have changed through the progression of my sons’ condition.

But, what has never changed is that little smile, the twinkle, the little leg thrown out to trip his brothers up; that mischief, that beautiful laugh of his and the way he hugs me when he’s in the mood to.

My son is very much still here.

My son has adapted so much in his 18 years that I don’t think parents like me could ever do without them leading us.

So on this 18th birthday of his, I wanted to share how strong my son is and how strong he makes me, his daddy, his brothers and his extended family.

We are all so proud of him and with this pandemic going on, he has prepared us well for adapting to another new ‘normal’.

We won’t be having a big birthday bash (like we had hoped and planned for) but we are hoping to have a few balloons and maybe even a cake – We hope parents on the start of their journeys know that while doctors must tell you the harsh reality of your child’s condition, they can’t stop you from hoping and finding the ray of sunshine because it is there, it is always there. Try and stay in the here and now, as best you can.

*This May 15th is International MPS Awareness Day. What is MPS? Please click on the link to find out more.

Ethan has MPS type 2 – Hunter Syndrome.

https://www.mpssociety.org.uk

Be Happy

Happiness. Joy. Love.

Being Happy is a personal journey, with many factors contributing to the level of happiness we may feel at any one time. It comes in many forms, whether it be a small feeling of joy, or an overwhelming and intense joy. It can be taken away unexpectedly, or brought on when we least expect it. Happiness is something we work towards, it can be in our control, but also out of our control. It’s a state of mind, an emotion, a feeling. It’s complicated, yet amazing.

For me, happiness is the most important thing for my son.

The levels I will go to, to ensure I keep him happy cannot be measured.

A few years ago, we started the EHCP journey. I was asked what my aspirations were for Zachariah, and told them to list them. My first wish was for Zachariah to BE HAPPY. My steps to success for this particular aspiration was to keep on top of his medical needs to keep him comfortable.

Nothing extraordinary about that right?

Not the case in reality, I was greeted with negativity over my goal, as it could not be measured. I was told I could not have the aspiration of happiness for my son because they did not have the ability to keep track of this. I was absolutely gobsmacked! Does it really matter if you cannot measure it, I, his Mother can, and that’s all that matters.

The point I’m making here is, what is the point of setting targets, if your child is unhappy. What do we achieve, if we push our children and decide what we want them to succeed in if we are not nurturing one of the most basic needs.

I truly believe that a happy child will achieve everything they need to.

What makes Zachariah happy?

-Nature

-Family and Friends

-Music

We are a music loving family, (well in a non professional way anyway, as I for one cannot hold a note or keep a rhythm, which Tim finds it hilarious!) But more in a way of enjoying different types of sounds, melodies and music. We’ve always got a CD or the radio playing in the background, or use Netflix for the live tours, two of Zachariah’s favourites being Tayor Swift and Hans Zimmer. Music has an amazing way of touching our emotions and speaking to us.

During these strange times, we have used music to lift our spirits, and promote a happy atmosphere for us all to be in. There are so many pressures right now to be doing the right thing. A huge one being to homeschool our children and keep their academic development on track. What I want to get across to you all within this blog, is happiness is above all this, our children, as well as us, are experiencing new and strange territory right now and there is no right or wrong way to react to it.

Yes, look at the school work and create a timetable to ensure different subjects are being covered, but have fun too, and really sit down with your children, spend time with them and maybe you will learn something new about them. Let them take the lead once in a while. Use this time to do something different and just BE.

In a world that is experiencing great sadness, be the smile.

Finding our Circle of Celebration

In the life of a child who comes from healthy family dynamics, it is likely you will find no one more proud of that child than his parents/caregivers. As caregivers, we have an endless list of roles we step into but I believe that cheerleader and encouragement-bellower are at the top of that list. What a joy it is to see the potential in our children, shepherd them toward their goals, and celebrate their accomplishments like crazy.

Sometimes, we may even share those accomplishments with others so they may join us in the pride and celebration we lavish on our children.

In recent years, one of the greatest platforms for sharing parental pride has become social media. While scrolling through Facebook or Instagram, it takes only seconds to find one post after another by parents who delight in their children and want to share all about how their child made the honor roll, starting their first job, or will be graduating with honors. My heart swells when I see parents praising their children and I am happy to celebrate alongside them.

However, every now and then, I feel a pang in my heart as these particular pride-gushing posts cross my feed.

My friend is sharing a video of her child’s first steps and first sentence. I have children who will never walk and rely on pictures and devices to communicate even the simplest words. One parent is sharing about her child who graduated with honors and is chasing her dream job. My children will likely live with me forever and are unable to have the jobs of their dreams.  A few years ago, I was committed to sharing my children’s unique accomplishments right alongside those of other parents on social media. However, I quickly found that it was difficult to protect my children, their stories, and the sacredness of their struggles when sharing in this way.

I still share many posts of my children and their joys. But I now keep the accomplishments to myself in an effort to protect my children (and perhaps myself too) from judgement, comparison, and overexposure. There was also a time where I would share my children’s accomplishments in groups of family and friends but we were often met with awkward responses, hurtful questions, and unkind comments. Eventually, our family and the things we throw parties for each and every day seems to slip out of many circles and into the background.

The thing is, my children accomplish just as much—and perhaps more—than the children of my friends who do not live with a long list of diagnoses. My children are the hardest-working, most dedicated overcomers I have ever met and every one of their accomplishments are worth celebrating in full. Over time, our family has learned how to celebrate and how to do it big. Sometimes, these victories are shouted about and danced for only within the walls of our own home and that is enough for us. But we also are slowly building a tribe who loves to trumpet for our children just as loudly as we do.

A few times a week, I send a text sharing about the big things my little people have accomplished in a day.

Sometimes, it is crushing a speech or physical therapy goal they have been working on for years. Other times, it is making it through a sensory-triggering grocery run without a meltdown or holding a pencil for more than a few seconds. When my friends who have become family respond to these messages with a string of excitement and celebration for my children followed by a dozen exclamation points, my heart swells and I know that we have found our circle of celebration.

A few people I know call my house the party house and I believe that is a very fitting statement. It’s always a party around here. How could it not be? Our house is full of unique, warrior children who live and love so big while still pushing themselves to do and be better. How in the world could we NOT celebrate non-stop? I am so thankful for our unique journey and those who are along for the messy, beautiful, party-filled ride.