Dear Bullies…

I told my son to stand up to you and to hit you back the next time you lay your hands on him.

My son is currently crying, he is sobbing and he has just said to me, “I can’t take it any more mum, I can’t cope, I can’t take what is happening to me”.

Turns out he only wanted to play with you in the school playground today.

Instead of saying, “No,” or even just being rude and ignoring him, one of you stole his hat and threw it on the ground whilst another stood on it.

Then, a third person overpowered him and got him in a headlock when he stood up for himself.

Just like I had told him to.

Imagine how your own mum or dad would feel if this was you crying to them, the disappointment in their faces as they try to console you and tell you that it will all be OK.

How does this make you feel?

My son is special and he is more special than you, not because he is my son, but because he has a good heart and is a good decent person.

He does not have a malicious bone in his body but he is very naïve and will easily forgive.

He would give you the chance to do this to him again in a heartbeat if he thought you would play with him and be his friend.

We have brought him up to be kind to others, to always interact and to try and make new friends – do you know how hard it is for some children to make new friends when they struggle to communicate?

Yes, you are 9 years old and children will be children, but you are cruel, you know the difference between right and wrong and I don’t have much hope for your future.

When I approached the head of school with your names – she was not surprised and was already aware of your group, in fact you had only been back in the playground for a few days after having break times revoked previously for the same behaviour.

I take some comfort, selfishly, knowing that it is not just my child that you are being mean too.

The thing is though, my son will grow into a wonderful and respectful young man because I will make sure of that.

He will excel and stand head and shoulders above people like you, even with his challenges because good people prevail.

Yes, it will be a long journey and there will be many more other children like you along his road but, you see, what is different, is that he will be the better person in the long run.


An upset mum x

Am I Sharing Too Much?

It is quite frightening to say the least! I, myself, have seen a few stories like these in the past. But I never really knew how it might affect my family in the future.

The other day, I was lying in bed showing my son Oliver pictures of him of when he was a baby.

I would show him a photo and just describe the time period or the story behind the photo. Right after, I would flash the photo to my husband, followed with a sigh of disbelief.

Disbelief that time has flown by so quickly, and how different my children now look compared to their chubby toothy grins back then.

My husband would ask me to send him a photo or two, and I questioned why he wanted certain ones.

To my surprise, he said that he takes the photos (which I mostly pulled off of my Facebook) that have the most likes, and would Google search them to make sure that no one was publicly using them for their own personal gain.

I had no idea he had ever done this, let alone had been doing it for a while.

Like myself, he had come across stories of people using photos of children (most of the time children with disabilities or illnesses) and setting up a GoFundMe me account to raise money.

This money, of course, would never reach the families truly in need, nor have any approval to use these photos.

Of course, I am not saying that all the accounts have been fraud, but just the ones that I came across that were proven by the families themselves, to be fake.

I could not imagine scrolling the internet and hearing from friends or family that they donated to the “said” account and me having no idea of what they were talking about.

I have never questioned myself, before then, if I was sharing too much.

Ever since receiving Oliver’s diagnosis, I found my answers and faith in family’s who shared their journey and story with me or others.

Because of that, there was no doubt that I would do the same for other families in the future. I started my blogs, and have even written for others, personally about my son and family.

Unfortunately, that is a chance that I know I am taking every single day when I share our story.

But I am glad that my husband has helped and taken precaution to make sure we can try to avoid such a terrible situation from happening to us.

Realising Her Brother is Different

This picture shows that my daughter is so aware of her brother’s difficulties and limitations and will do anything she can to help him.

She has just turned 9 and although her brother has always had autism, always been non verbal and always had learning difficulties she seems to understand what that actually means much more than ever before.

As her understanding and knowledge grows so does her awareness that her brother will never be the same as her.

Children take in much more than we ever realise.

She watches me grab his arm as we approach roads where I only needed a small vocal reminder to be careful to her.

She watches me cut up his dinner for him where I would leave hers untouched for her to manage herself.

She watches me dress her brother daily knowing that no other child in her class would require that level of personal care.

She knows he can’t read and write where she can do both fluently.

I was right behind the children and could have reached out to touch either of them yet as the children approached a small turning area at the end of my street I noticed my daughter immediately pull her brother back by his coat.

It’s one of the many simple actions she now does instinctively when I am out with them both.

She blocks her brother from danger by standing in front of him, she removes things from his reach that she knows could be harmful, she types things into google or YouTube on his behalf because she understands he can’t do it himself.

She reassures him and explains everything on a level he understands.

She is not embarrassed by her brother nor afraid to care for him in public.

She points out disabled toilets for me when we are out ‘just in case my brother needs to be changed mum’, and she knows his triggers for meltdowns.

I have never had to sit down with her and explain her brother diagnosis or had to write down the best ways to handle him. She has mastered all that by watching and living daily with a disabled sibling.

Living with a brother with complex needs does affect her negatively but there is also a positive too.

While she may not yet have the full vocabulary or confidence to talk in detail about her brother her actions show an awareness that is so beautiful.

She was asked recently what she wanted to do when she was older and she said she didn’t know.

She then came home and told me how questions like that are so hard because she just thought about her brother knowing he could never answer that either.

She never asks if he will ever read or write or play games like her. She never asks if he will get better or go to her school one day like she did when he was younger.

Instead she knows he is who he is and that he is very precious and needs people to look out for him.

As my son gets older I will be looking for carers for him to allow me to get some respite.

When I think about the sort of person I want guiding my son, meeting his needs and supporting him I know exactly the sort of person I want: someone just like his sister.

I won’t always be around for my son, but while he has his sister I know he will be in very safe hands indeed.

The Crystal Ball of Hope

His diagnosis of quadriplegic cerebral palsy GMFCS V, didn’t really mean much to us in the early days.

We’d never heard of cerebral palsy, had no idea what the GMFCS ranking meant and were really feeling our way in the dark.

Medical professionals were so busy trying to manage our expectations of what William wouldn’t be able to do, they forgot to focus on helping him to learn the skills he might have been able to do.

We were always given doom and gloom predictions about his future “he’ll never walk” “he won’t be able to sit on his own”, “he won’t be able to tell the difference between you and a neighbour”.

Instead of focusing on the things he might be able to do and helping him to make sense of those.

It was as if these, so called, professionals had some sort of crystal ball which wasn’t functioning quite right.

Had they bothered to try the old trick of turning it on and off again perhaps it might have been able to provide us with some small glimmers of hope in those darkest days.

Maybe that crystal ball would have told us “He will be the happiest child you’ll ever meet and will have the most infectious laugh you ever heard” and “He will enjoy sitting in his wheelchair people watching and snooping on stranger’s conversations.”

If it had, perhaps those first few years might have been a little different.

Of course, it is important to be realistic and not provide false hope but is false hope worse than no hope?

Realistic hope back then would have managed our expectations whilst giving us a sense of hope for the future.

Some of those predictions were of course right.  William can’t walk, and he needs support to sit up, but are those two skills really all that important?

They were way off with the prediction about his vision though!

He wears glasses, but his vision is low on the list of problems he has to deal with and his face will light up as soon as someone he knows walks into the room.

He has no trouble recognising people!

William may not be like other little boys his age but that doesn’t mean life is all doom and gloom.

Far from it in fact! We laugh and enjoy ourselves just like other families.

William was a sheep in the school nativity this year and he got so excited about Christmas and all the presents Santa brought.

Life is different, we have to plan things a little more and our house is full of equipment instead of toys but is that really so bad?

We are now supported by an incredible team of experts who focus on the, ‘cans’, instead of the, ‘can nots’, and will do whatever they can to make sure William lives his life to the full.

I hope the crystal balls that the medical professionals rely on so heavily have been upgraded by now, almost 9 years later, so that families like mine aren’t stripped of all hope for the future simply because they are afraid of giving false hopes.

Special Needs Parenting: Finding kindness and the perfect shoes

The hustle and bustle, the hordes of shoppers, and the thought of germs all around create a hermit out of me.

Sitting at my computer in my pajamas with a cup of coffee is definitely my preferred shopping experience.

When my daughter needed shoes to fit over her bulky, cumbersome AFO leg braces this December, I knew online shopping was out of the question.

They had to fit just right and they had to be perfect for helping her on her quest to taking steps.

My daughter is seven years old, and has a genetic disorder that among other things, causes low muscle tone. She has worn orthotic braces for years.

As she is now learning to take independent steps in a gait trainer, her braces with the sole made onto the bottom are beginning to cause a problem.

She’s never needed shoes before with them, but now she’s starting to rock back on her heels while walking, needing more traction.

I have taken for granted all these years how daunting the task of finding AFO compatible shoes would be!

On a Saturday evening, my family bravely headed into a large shoe store, child and braces in tow.

As we made our way to the kids’ shoes, her anxiety kicked in, and my husband swiftly carried our crying daughter back to the car.

The store was jam-packed, and as my own anxiety began to climb, a friendly sales associate asked if I needed help. I started into a long spiel of what I needed while showing her one of the braces.

As they surely don’t get a lot of requests like mine, I worried that I would be disappointed when she politely asked another associate to come over and help.

I explained my need again and was met with understanding and a dedicated attempt to find a solution.

One of them asked me what my daughter’s diagnosis was, and shared with me that she was studying medicine.

She nodded with sincere interest as I related to her the ins and outs of a Chromosome 1q43q44 deletion.

She listened intently and compassionately as I opened up about the conditions associated with her disorder.

Both of the sales associates pulled down countless shoe boxes, searched high and low for wide width shoes, and sat on the floor with me to try each and every one of them over the brace.

They thought of creative ideas, and they were more disappointed than I was when the only pair that precisely fit were black with blinding neon green colored stripes.

As the proper fit and style had been identified, the mission was now focused on finding the same fit in a pretty, girly color.

They eagerly offered to order a pair online for me, in my price range and color choice, to be shipped to my home. Hooray!

We all walked to the front of the store, and I was feeling quite accomplished as they searched their system to order exactly what we needed.

As I was preparing to pay and head out of the store, I thanked the young ladies and expressed my gratitude to them for going out of their way to assist me.

They both replied that it was no trouble and that they were just, “doing their job.”

The customer service that I received that day was beyond superb.

For a Special Needs Mom, experiences like that are greatly appreciated.  I am very thankful that I ventured out into that particular store on that particular Saturday in December.

Emotional Pets

Whether it is for diabetes, assistance in predicting seizures, or even mobility, there is no doubt that these therapy dogs can help tremendously.

Of course, with such trained dogs, comes the price to help raise them into what makes them useful.

As far as my research has informed me, these prices can go as high as $15,000 and even higher!  Most families that I have seen usually do fundraisers or donations to help pay this.

Unfortunately my son is three years old, and at the moment he is frightened of dogs and raising such a large amount of money doesn’t seem feasible.

But me being the mom that I am and strive to be, I knew I could find him another pet in which he could have for emotional support.

For me, emotional support can mean just having something other than family or human, to love and care for.

This year, we decided to take that step and bought my little Oliver a rabbit. Why a rabbit, you may ask?

We found that Oliver was not scared of small, calm animals like our household cat, and now new, rabbit. He decided to name her Sky High (because he loves Paw Patrol).

When we brought her home, she was just two months of age. A tiny little thing!

Love came easy for him. He bundled her up in a blanket and would just love on her, until I told him it was time to give her a break.

Not only has she been a great pet for him to love on, it has shown his responsibility too.

He is always so excited when I tell him it is time for him to help me feed her, change her bedding, and give her some water for drinking.

With her having a ground level cage, it is easy for him to help me, as my son cannot stand nor walk on his own without assistance.

His little Sky was handled by hand since birth, so we don’t ever have to worry about her nibbling his fingers.

Our little bunny has been a great addition for my son, where a dog has shown to be too much stimulation for him to handle.

For Oliver being such a young age, a bunny is easy to keep up with, and is a little easier for us to afford right now while we introduce things like care and responsibility to him.