Change is possible.

20140417-200738.jpg

This post is for all of us with kids/adults with disabilities in our lives. You could be a mother. A father. A sibling. A friend. A grandparent. An aunt or uncle. A cousin. A respite worker. A teacher. A therapist. Anyone. Everyone. This post is for you!

If you could change 10 things that would make your life, your family’s life or you child’s life better, what would they be?

In case your mind is bogged down with a million things on your to do list, here are some ideas to get you started:

· Funding for respite, products, therapy, in home support and care,

· Support groups, advice sources, someone/somewhere to reach out to for help,

· Improved access and assistance on public transport, in fun parks, at airports, in restaurants, in shops/stores,

· New products that make life easier, less expensive, funded by government,

· Greater awareness and understanding of disability, more inclusion/integration, education, research,

· Anything you can think off!!

What are the key things in your life/country/environment that you would like to change or add?

Have you seen change happen? Have you read about Mama Lewis and her quest and success in getting modified shopping trolleys for kids with disabilities in grocery stores around the UK?

Change is possible. It can happen. It starts here.

Please leave a message in the comments about the type of change you need/would like to see to make your life, and your child’s life, better.

I’ll start. Inclusion. Acceptance. Education…Or how about a portable toilet seat that is supportive enough for Sebastian’s needs but compact enough for travel?

Standing Tall

20140404-225724.jpg

When he was in his Upsee, he could feel the sun on his face and felt the uneven ground beneath his feet. His chest was stretched wide open in his vest, which is important since he tends to hunch forward, especially in the carrier. At one point a new friend asked us to pose for a photo. Suddenly, I was overcome with emotion. Here we were, all standing together, in an exotic, rustic locale. I wasn’t holding him. We weren’t crouching down to be next to his wheelchair. We were all standing there. Together.

–an excerpt taken from my article on the Bloom blogTaking steps, together, with the Upsee

Sebastian’s First Upsee Adventures

When I was approached by the team at Firefly to try the Go2Seat, I was excited that they chose me. After we tried it, I knew it would open doors for so many families. I wished we’d had it when Seb was little and we were in Cairo. At the time, they also mentioned another product that would allow you to walk with your child, upright in front of you, with a harness attaching you together. I thought of walking Sebastian, hunched over, holding him up beneath his arms, as we had done since he was a baby. His legs could hold his weight and move but his body didn’t have the strength to balance and coordinate the movements for him so we were that strength. And he was happy.

20140401-222222.jpg

As he got older he wanted to do more, go further. But leaning over got tiresome. We were excited when he got his walker and could move a bit more independently to walk around which made him so happy. When they told me about this product that hadn’t launched yet, they said I would need to answer some questions to see if we would be a good candidate for the trial. I recalled walking him at the park from swing to slide. Taking his walker with us to the park was not realistic. I wanted to try that product. Thankfully we did.

20140401-223422.jpg

The first time I tried to Upsee with Sebastian it felt a bit strange. But once I relaxed and waited for his movements, we got into a good rhythm, much like when he’s walking in his Kid Walk. I could feel his movements which I felt helped me understand how his body worked. It helped me be more patient with him and understand that moving his left leg is difficult because his hip is displaced a bit. We walked around the main floor of our home, in between small spaces where his walker can’t get through. He looked from side to side, taking in a new perspective. Although we were attached, he was not paying attention to me. He saw where he wanted to go and he moved his legs to get there. We stopped next to the couch for a break and as we stood there Tallula walked up and gave her big brother a big hug, out of nowhere! Pure awesomeness. Ali and I just looked at each other in awe. She did it again. The week following, every day after school she asked me to hold Seb up so that she could hug him. He giggled each time. My eyes filled with tears of happiness.

20140401-221943.jpg

Fast forward to last week when Sebastian was walking around the Giants Causeway with his dad in the Upsee. We were so excited that Ali forgot to clip in the waist belts. Not a problem when the inventor of the Upsee is there with you! After a few adjustments they were good to go, exploring and stepping up and over uneven, hexagonal shaped rocks. Having an adventure. In Northern Ireland!

20140401-221054.jpg

How did we get there? I was invited to attend the Upsee launch with a panel of other blogging parents and siblings of children with disabilities. I decided to take my family with me. We spent two days with the team at Leckey-Firefly learning about how things work and meeting Debby, the inventor of the Upsee. A mother of a son with cp seeing her dream/invention realized! I met some wonderful families, including the ones in the photo that’s being shared through various media outlets.

Firefly is a part of Leckey that works to create affordable, inclusive products for children with physical disabilities. The Upsee is made in the Leckey factory in Belfast by local folks making a living wage. When Debby forged a partnership with Leckey, she wanted to make sure the Upsee was affordable for everyone. To help make that possible, it is only available online and not through any third party vendors. In order to help others learn more about the product, its benefits and the inventor behind it, Firfely is holding three free webinars for various time zones on April 1, 2, 3. Sign up today so you will be ready to purchase your Upsee on April 7 ($489USD, includes shipping).

20140401-220419.jpg

Disclaimer: Although Firefly provided us with an Upsee to trial, all opinions and experiences are my own.

Specifics: Sebastian is wearing a size 6-8 in the above photos. He normally wears a size 3/4t top so I was worried this size would be too big. The vest adjusts down and is very snug. Having the larger size works and will also allow him room to grow to continue to use the Upsee for years ahead, in all corners of the world.