Raising Kids With Special Needs: MY Birthday Wish!

Our childrens’ birthdays can be hard but people tend to forget that OUR birthdays are equally as difficult sometimes.

Tomorrow I step slightly closer to a, ‘Significant Birthday’, (gonna leave you guessing).

And I am not overcome with joy at the prospect.

Ageing doesn’t bother me at all (think hair dye and anti-wrinkle cream).

What upsets me is that while we are all ageing, my precious little boy is almost like Peter Pan.

He has made significant leaps forward in his development in the past 12 months, but his motor skills are still virtually non-existent.

I find myself jealous of those mothers who have to repeatedly wipe their kiddo’s faces clean, and of the mothers shouting at their children to sit down/shut up/be quiet.

Actually, no. I’m not jealous of those parents…I’m heartbroken.

I want to give those parents a shake and tell them to revel in their child’s mischief and willful behaviour!

I want them to understand, deeply, that they are so so lucky that their child CAN run or talk the hind legs off a donkey.

I would give anything for my boy to have those same skills.

Tomorrow makes another year gone in my life and there are so many memories from that year, not all bad either!

But it has thrown into sharp focus how slow Sam’s development really is.

For the past 3 years he’s been SO close to crawling, but he hasn’t made any progress in this area at all.

He’s been ALMOST sitting independently, but again not moving forward on this one.

And that makes me ache deeply in my heart and soul.

It isn’t the same heart breaking, stabbing pain the seizures cause, that pain comes from fear and the feelings of being utterly powerless to do anything to help my boy.

It’s the much deeper ache of grief.

And it doesn’t ever go away.

We learn to live with it, like you would learn to go on living without a loved one who’s passed away, but it’s always there.

He HAS made leaps forward in his comprehension however…

Only on Friday his teacher was incredibly excited to tell us that Sam had been trying to blow a bubble off her finger in class; and that in the sensory room he had used his eyes brilliantly,

looking around at all the decorations still up in there from their Winter Wonderland theme…!

These are the moments we cherish, because what is only a tiny achievement to most is phenomenal for our little guy.

What I REALLY want for my birthday, you can’t buy in the shops or online.

It isn’t something that you can hold or feel.

All I want is for my little boy to have a happy, healthy life free of the accursed seizures that affect him daily.

If I can’t have that, tomorrow at least, then I’ll happily settle for a birthday cuddle off my favourite little person, and hopefully a chance to play with him after school (assuming he isn’t too tired).

After all, growing old is inevitable… growing up is optional.

Marks & Spencer launch clothing range for disabled children

The clothing range will be sold exclusively online and is in response to a customer request from a special needs Grandparent.

It is believed that this is the first ‘mainstream’ retailer to launch a clothing range meeting the needs of disabled children.

Marks and Spencer spokesperson commented, ‘We have extended the age range of our bodysuits and sleepsuits up to the age of 7-8 years.

The full range includes 16 styles in white, pink and blue colourways – including a bodysuit that has been adapted for feeding tubes.’

The UK retailer, worked with disability charity Scope to develop the range of clothing for kids with special needs.

The collection is 100% cotton and prices start at £3 for a sleeveless bodysuit and £7 for a sleepsuit.

Within hours of pre-launching a limited selection of the range range, it had already sold out or was indicating low stock.

The full launch of the range is available now.

This is a clear reflection of the need for the range and the lack of affordable alternatives for parents of children with special needs.

The Marks & Spencer long sleeve vest retails at £4 per vest in comparison to £15 per vest sold by Rackety’s.

If you did manage to get your hands on some, we’d love to hear your thoughts – please get in touch!

Do You Know What, ‘Ableism’, Means?

Ableism, unfavourably impacts the lives of all people with disabilities.

Until recently, I’m embarrassed to admit, I had never even heard of the term ableism.

And so for the sake of others for whom ableism may be a new term, I thought it might be beneficial to explain what it is.

Simply put; ableism is the discrimination and prejudice against people who have disabilities.

Encompassed in the concept of ableism are hateful attitudes toward the disabled, denying them access throughout their communities, denying them housing and jobs, the creation of benefit systems designed to perpetuate poverty for the disabled, and communities set up for and that cater to the non-disabled.

Ableism is the belief that people with physical, mental or developmental disabilities need to be fixed or normalized in order to be considered full, functioning, and contributing members of society.

I’m sure you’ll all agree that ableism needs to be wiped off the face of the earth!

In a perfect world our loved ones with special challenges would live, work, and play in welcoming, friendly, accommodating, inclusive, and equal communities.

But since we do not yet live in a perfect world, we need to actively begin creating one for our children with disabilities to some day inhabit.

The first step in creating the perfect world for our children with disabilities, is to be actively, persistently, and unceasingly making sure that our medical professionals, politicians, law-makers, and the general public know that our loved ones with disabilities are not defective or inferior.

We need to actively show the world that our loved ones with disabilities are not broken and do not need to be fixed.

We need to make it known to the world that our loved ones with disabilities are not problems to be solved, but that there are problems within their society that do need to be solved.

We need to boldly proclaim from the mountain tops that our loved ones with disabilities are productive, contributing members of society and valuable assets to their communities.

We need to vehemently insist that our loved ones with disabilities do not need to be conformed to fit into society, but that the world needs to be adapted to accommodate their unique needs.

The world needs to know that our loved ones with special needs are more than their disabilities.

The world needs to know that our loved ones with disabilities have unique points of views, talents, gifts and opinions that can help make this world a better place.

The world needs to know that our loved ones with disabilities are awesome, complete, and unbroken human beings worthy of being loved and treated with dignity and respect.

We need to vigilantly and unwaveringly fight for the complete and total unconditional acceptance, accommodation, and inclusion into society of all our loved ones with disabilities.

GoTo Shop Trolleys Now Available in Almost 400 ASDA Stores Across the UK

To find out if your local ASDA store has a GoTo Shop disability trolley visit the Firefly Finder on our website and search your postcode.

Don’t forget to send us your ASDA GoTo Shop trolley photos.

You can support GoTo Shop Campaign when you download the campaign leaflet here and hand it in to your local store.

First Wheelchair = Independence For My Child With Special Needs

It is a procedure that one would assume comes with ease, yet I find myself nervous and fearful of rejection.

Denial. Claiming he is too small, or that there is no definitive proof just yet that he absolutely needs one.

If you would have told me that we would one day be doing this, when Oliver was born, I would have thought you were crazy.

I was all for pushing independence and faith in him one day walking.

Granted, this is still a high possibility but what I did not understand was that a wheelchair is Oliver’s independence in disguise.

We have a man-made wheelchair at home, which is designed out of a bumbo, stroller wheels, and a wooden base.

Ever since Oliver has learned how to get around in it, he has been able to discover his surroundings.

He would slowly push the wheels back and forth and realize it moved him.

That then transitioned into full rolls up and down the hallway.

I now catch myself gripping at him to stay out of the cabinets or to leave the dishwasher door down while I put dishes away.

He has finally learned how to crawl, and we encourage both types of mobility, but sometimes we just want to get around the easiest way possible.

Sometimes he just may not feel like mustering up the extra strength to get from the kitchen to the living room by hands and knees.

Getting a wheelchair for Oliver has not in any way signed over his ability to one day walk.

We do know that being almost two years old, he needs to get around in any way he can and be a kid.

For him, this just means by a wheelchair.

We unfortunately have had many friends in the community we are apart of get denied for a wheelchair for their child or children.

This is just another fight we have to go through to get what is right for our children!

I am hoping the process goes easy and we can get this little boy cruising.

Out in public to be exact.

Pushing him around in a stroller is one thing, but being able to get from A to B by his own self is where independence grows.

I want to look at him cruising around with his older brother and see the happiness in their eyes.

I want them to learn and understand the equality of one another. I am no longer afraid of the thought of my little boy being in a wheelchair or of the stares and looks I may receive.

I have hit the pave in the road that finally knocked some sense into me!

Getting him this device is not bounding his body but rather setting it free!

Who wouldn’t love to finally receive the gift of mobility, no matter what shape it comes in?