Raising Kids With Disabilities: Thank You, Grandparents!

It might not always be the case but today there is a point to what I’m going to say…

As Sam’s mum, I live in a safe little bubble when at home with Sam, his Dad and our various critters.

It’s a warm, safe, loving place where the world doesn’t matter, milestones don’t matter, and where our reality is normal rather than something to be pitied.

When we’re home we’re spared the experience of having to gently explain to concerned passers by that we really are OK, and thank you but no an ambulance isn’t needed.

We’ve got this, honestly, but thank you so much for asking.

Most people are genuinely lovely and as we discovered over Christmas although to us the sight of Sam in a seizure is common place, to others its pretty shocking to witness.

Especially when the oxygen mask or emergency medication has to be deployed.

Having Sam has made me see the human race in a different light I suppose.

There’s so much love and kindness in this world, so many people who don’t know him or us who want to help in any way they can.

But what they can’t see is the hidden depths of our souls, the place where the darkest memories are buried as deeply as possible.

Where old wounds have never fully healed, and the pain of memories we wish we didn’t have burns deeply into our very being.

I wouldn’t wish those memories on my worst enemy, but they are mine and are part of who I now am.

Then there are the other heros of the tale…

Sam’s really rather remarkable extended family of grandparents, uncles, auntys, great uncles and so on.

But it is his grandparents who this post is really about.

I don’t know why I didn’t see it before, maybe it was Dad’s passing that put things into sharper focus, but watching my lovely Mum with Sam today I realised that she doesn’t have that safety bubble that my little family of me, Sam and J have to retreat to in times of crisis.

She lives with my brother’s family and their two young children, both of whom are healthy and well, thankfully.

But for her, everytime she comes to visit and sees the difference in Sam to his cousins the pain is fresh and as sharp as it ever was.

I think people tend to forget about the grandparents sometimes…not everyone is as lucky as we are in having all grandparents in full support and active in the lives of their disabled grandkids.

But those hidden wounds are shared by OUR parents, who have to watch their grandchildren suffer, but also their own children as we battle to be the best advocates, therapists, carers and parents that we possibly can be.

So this is a shout out to the unsung heroes, the grandparents who are there in any way they can be for their children and grandchildren.

Because sometimes its far harder to be in a supporting role, than the lead in the show.

5 Valentine’s Day Gift Ideas for Special Needs Moms

You learn a lot about science as a special needs mom.

This can take many, many forms:

Chemistry – through understanding the combination of drugs you will have to administer to your child.

Biology – an in depth knowledge of how the body works.

Even Physics – from how to position your child to the pressure needed to tube feed.

Some moms will be able to draw on subjects studied at school or college, others may work in the field of science where the terms are familiar but they never thought they would help with caring for their child with special needs.

For others, they are thrown in at the deep end with a crash course to bring them up to speed.

No matter what your background you very quickly become an expert in your child’s condition and the care they need as well as gaining a newly developed appreciation of the ‘sciences’.

So what better way to celebrate this knowledge than a beautiful piece of science jewellery from Science Jewelry 1824 this Valentine’s Day!

Here are Firefly’s top picks from the amazing range of science inspired jewellery…

DNA Necklace – £83.00

This stunning DNA twist is available in sterling silver with either a 42 or 45cm chain. The perfect gift for moms to kids with genetic conditions. What better way to raise awareness of your child’s condition than to spark a conversation when some one asks about your beautiful necklace?

Heartbeat Necklace – £84.00

An ideal gift for moms of children with heart conditions, this beautiful necklace is also available in sterling silver with either a 42 or 45cm chain.

Caffeine Ring – £82.00

There’s very few moms who don’t rely on caffeine in the form of coffee to see them through the day (and night). Why not show your love for coffee with this amazing Caffeine ring available in sterling sliver from US ring sizes 5 through to 12.

Dopamine Ring – £82.00

Dopamine is a type of neurotransmitter that can be hugely significant in the lives of special needs families. Dopamine can be the cause of learning difficulties for example in the rare genetic condition PKU and cretinism. Dopamine problems are also implicated in ADHD as well as depression. This dopamine ring is the perfect way to demonstrate your tie to this vital neurotransmitter.

Serotonin Necklace – from £84.00

You may not be familiar with serotonin but it is a natural mood stabliser and it can help with sleeping, digestion and eating. Serotonin impacts every part of your body, from your emotions to your motor skills. So it’s safe to say we could all do with a bit of serotonin. The serotonin necklace from Science Jewellery 1824 is available in sterling silver, rose gold plated brass and gold plated brass in two necklace lengths 42 and 45cm.

Why not embrace your knowledge for science with a Valentine’s gift from the Science Jewellery 1824?

Tag your other half in this blog post as a subtle hint!

Check out the full range from Science Jewellery 1824 here.

Football and Friendship

We call it soccer in Canada but my husband still calls it football.

And Sebastian loves to watch it.

I was never sure if he would enjoy watching sports because I thought he would never play them.

But he loves watching all of them, basketball, soccer, American football.

Always with his dad.

And as it turns out, he plays one too.

Every week Sebastian plays in an all abilities soccer league with his younger sister.

When Sebastian was still in pre-school one of his teachers set him up to kick goals during playtime outside.

At first she would hold him up under his arms so he could kick the ball to the goal. The other three year olds would cheer him on and run up and say ‘you are great at making goals Sebastian.’

Once he got his Kidwalk walker; he started kicking those goals independently.

I loved seeing the photos of their play time at school and hearing the stories.

I was so thankful he went to an integrated preschool so he could have these opportunities.

I never imagined he would play in a league or on a team.

When he was 5 he moved up to another school, and while it wasn’t integrated with typical kids, he still had gym time and the opportunity to play games with kids of different abilities.

Sebastian had an amazing gym teacher who came up to me after school one day and told me how he had kicked the oversized beach ball all the way across the gym during class.

He had been so happy and so proud of himself.

Sebastian was playing soccer and he loved it.

We did our best to play with him outside during the warmer months, going for walks to the open space across the street and kicking the ball.

He needed one of us to steer him in his Kidwalk and sometimes encourage him, especially when he got tired.

He also needed a flat, hard surface, so playing on a football pitch wasn’t possible.

We found out about an all abilities soccer group meeting at the facility where his school was, in the same gym, on Sunday afternoons.

It was right during his lunch time but we decided to try it out.

Once we did, there was no looking back.

He was in love with the game and we were in love with him playing it.

He has a volunteer that helps him steer and encourages him so we can sit on the sidelines and cheer him on.

There are skills the kids work on for most of the session and at the end they play a friendly match.

I love watching his sister run over to check on him or even better, try to block one of his balls from the goal.

Sibling rivalry.

The kids pass each other the ball and cheer each other on.

It takes Sebastian triple the time to get to one side of the gym to the other so he can’t participate fully in the game.

But the kids always pass the ball to him to make a goal at least once and his smile is priceless.

The independence and camaraderie Sebastian feels during the hour he’s playing soccer means so much to me and even more to him.

This summer we were invited to play in a league outside in a nearby park, by the same teacher that had introduced soccer to Sebastian over four years ago.

Uncertain about the grass, we helped him navigate the terrain to the goal and he practiced his kicks and foot skills with a friend that used to share his bus route, so excited to see him and so full of enthusiasm.

They took turns cheering each other on; her with words of excitement and he with vocalizations and smiles.

The sun setting behind them, both accessing the football in their own way, he in his walker and her in her Upsee, they were out there in a local park, just playing soccer.