The News that Jade has Cerebral Palsy Changed Everything

We had to change the way we held her, talk to her, feed her and even put her to sleep.

A lot of information for mom and dad to take in.

But we had to deal with it. Each in our own way.

I started making plans for all the “what if’s”. Not sure what my husband was thinking, we were not really talking about it.

Our relationship took really bad strain because of it. But we had to deal with it in our own way. I think I cried for a day and that was it.

I’m a really strong person so I could deal with it, for myself and my husband, until he could come to terms with it by himself.

At least we didn’t blame each other.

But we blamed ourselves for a long time. Think sometimes we still do.

We have a very good support system. That is the key.

My mom is really a diamond. She is always there to listen and to help where she can.

My aunts and I are really close. They are always there if I need to talk to someone.

Jade’s godmother is really good to her. She spoils the kid rotten. But so it should be.

I remember the day we got the news. Everyone sent messages to say they are really sorry about what has happened but don’t worry, we are all here for you.

Jade’s godmother said to me “now she is even more special to all of us because she is different”. They knew not to call or come by as we had to deal with it first.

But they are there in a heartbeat if I call.

No matter where they are.

If you don’t have close family to lean on then take to the internet.

There are really good support groups all over the world.

They don’t judge you if you have an off day or an off month.

It’s amazing how people are there for you even if they don’t know you, but they know what you are dealing with.

It has been a bumpy road up till now.

It’s been nearly a year since we found out.

I want to say it gets easier but maybe it’s better to say it gets easier to deal with.

15 Amazing Things To Do in Your GoTo Seat

There are so many things children with special needs can see and do when using the GoTo Seat.

It’s sometimes hard to know where to start, but, perhaps our handy hints might help you decide – brought to you by our amazing Firefly Friends:

1. Supermarket Shopping….

The GoTo Seat was designed by Firefly and UK charity, Cerebra, to help mums and dads take their little boys and girls to the supermarket.

No need for a separate wheelchair and running the gauntlet at the supermarket.

2. Flirting with Supermarket Attendants…

Check out this photo (above) of Austin on his first GoTo Seat shopping adventure.

We do believe Austin is super cute and deserved a kiss from the supermarket till attendant…

but we would like to think the GoTo Seat had a part to play in this!

3. Dining…

The GoTo Seat gives children a sense of normality sitting in a ‘big boy/girl chair’ and participating with the rest of the family at meal times.

It’s really discreet and does not, ‘scream’, disability in a public dining area like other adapted chairs on the market.

Parents also take it to restaurants as it gives that extra trunk support required to keep your little one up right and eating happily.

4. Chilling out…

The GoTo Seat is ideal for kids just chilling out at home or at a friend’s house.

It is really portable and a really good short term substitute for a special adapted chair if only for 15 – 30 minutes.

5. Playing…

The GoTo Seat is a great way for kids to sit and play with a parent or a sibling at a kitchen table or play bench.

It opens up a whole new world for special needs children.

6. In a Swing at the Park…

The GoTo Seat can be used in different types of swings but mainly a bucket swing.

For many children it allows them to enjoy playing on the swings and playing at the park for the very first time.

7. Rocking Chair…

The sense of security and extra long straps on the GoTo Seat allows it to fit into most chairs.

You can easily put the GoTo Seat in a rocking chair and let your little one enjoy themselves in front of the TV or just relaxing rocking back and forward.

8. On an Airplane…

Although the GoTo Seat has not been approved by all airlines, some parents have used it on flights and have loved it.

Contact your airline before take-off to get approval.

9. In a Motorised Vehicle…

This looks like so much fun we wanted to try it ourselves.

The GoTo Seat does give special needs kids a sense of independence and allows them to do things they typically would not be able to do.

10. In the Shopping Mall Play Carts…

We love this so much as it truly allows for so much independence and normality.

11. On a Beach, Summer Seat or Deck Chair…

Coming into the summer months the GoTo Seat can be used on beach chairs and deck chairs due to the length of the straps.

It means mum and dad can allow children to relax and enjoy their holiday knowing that trunk control and head support is available.

12. Participating at Birthday Parties…

For some parents birthdays are a dreaded time as they feel their child is going to stick out in his or her wheelchair.

The GoTo Seat was a revelation for one of our Firefly friends, Gabriel, as it allowed him to sit and participate like everyone else at a birthday party.

13. In a Retro Wagon…

The GoTo Seat fits neatly in this retro wagon and parents have used it out on family walks and on day trips.

Again, with the GoTo Seat being lightweight and multi functional it can be used almost anywhere.

14. In a Bicycle Cart…

We love the sense of freedom the GoTo Seat allows parents and special needs children to experience, we were amazed to see this as some parents have to exclude their children from participating in bicycle rides, this is amazing!

15. On Holidays…

With summer time coming the possibilities are endless with the Firefly GoTo Seat, it can be used at the beach, in restaurants, in the hotel room, in the caravan or motor home, in bicycle trailors or on go karts.

The Cameron family used their GoTo Seat with Seth on their tour of South East Asia, Australia and New Zealand…

16. Amusement and Arcade Rides…

One of the most fun things for any kid to do is enjoy themselves at the fun fair trying out arcade and amusement rides.

But just don’t take our word for it on how the GoTo Seat is making a massive difference to special needs family participation.

Here are some Independent Reviews of the GoTo Seat – Enjoy!

You can buy the GoTo Seat here.

KaraMelissa // Noah’s Miracle // SarahHalstead // Premmeditations // Adapted World // Tough Little Cookies // Was this in the Plan? // Nurturing Noah’s Noggin

Progress on New Supermarket Trolleys for Kids with Disabilities

Supermum Stacie recently hit the airwaves on BBC Radio 4 to raise more awareness.

You can hear the feature here.

It was really nice to see the difference our trolley seat will make to special needs mums and dads in the supermarkets.

So watch this space!

Big thanks to Sainsbury’s for starting to address the issue and helping to promote special needs family participation.

If you would like to know more about Stacie Lewis check out her facebook here.