Inclusion: Celebrating the Unity in Our Individuality

Inclusion has conceptually been important to me since I can remember. The older Chloe gets, however, and especially the more she recognizes her differences and feels sad when she is left out, the more passionate I am becoming about inclusion! When I heard this song awhile back, it struck that chord within me - how truly special we all are and how much those differences should be embraced and celebrated.... that's right I said embraced and celebrated, not just accommodated. I put together this little video of children of all different abilities, personalities, talents, and special sparks. I dare you to not smile big while you're watching it!

I am one in a billion
I am the only one that I can be
That is something beautiful
I see the world like nobody else can see
I am the someone that nobody else can be
I'm the original, so irreplaceable
No matter who I'll be and who I've been
I am perfect just the way I am

I am one in a billion
I am the only one that I can be
And that's something beautiful
And I am a light that's shining
And I'll sing the song that only I can sing
Yes, that is something beautiful
It's something beautiful
It's something wonderful

I'm only human just like anyone
But I'm the only me under the sun
Just like a snowflake, no two are the same
And there's unity in our individuality
I am perfect just being me

I am one in a billion
I am the only one that I can be
And that's something beautiful
And I am a light that's shining
And I'll sing the song that only I can sing
Yes, that is something beautiful
It's something beautiful
It's something wonderful

Everybody is somebody that nobody else can be
Everybody is somebody that nobody else can be
Everybody is somebody, that's who I am
Everybody is somebody that nobody else can be
Everybody is somebody that nobody else can be
Everybody is somebody, that's who I am

I am one in a billion
I am the only one that I can be
And that's something beautiful

I am one in a billion
I am the only one that I can be
And that's something beautiful
And I am a light that's shining
And I'll sing the song that only I can sing
Yes, that is something beautiful
It's something beautiful
It's something wonderful

That's something beautiful

Autism and Faith

This video was put together by Sahara Cares.  This is a great tool to validate how you may feel about spectrum disorders or disabilities in general and how they impact your family's experience with worship services. 

Education is power. When those around us are educated, they become more accepting, understanding, and compassionate.  Please share so that the spirit of inclusion may be ever present in our religious gatherings and services.

Aquatic Therapy

If your life is anything like ours, you've spent plenty of hours involved in therapy.  Jackson has been involved in one form of therapy or another since birth.  It's part of our family's culture. 

This past summer, we stumbled across aquatic therapy and fell in love.  Jackson is quite used to a therapy gym, swings, balls, tubes, etc.  But... he hasn't spent a lot of time in a pool doing therapy.  The change has been great for him.  He is excited to go.  He enjoys himself while he is there, and most importantly, he has made great progress.

For our therapy sessions, we go through Mountain Land Physical Therapy.  Mountain Land books time at the Layton Surf and Swim Pool.  Mountain Land's trained therapist, Michelle, conducts the therapy sessions and she is wonderful with Jackson.  She quickly identified how and when to push him and how to help him stay motivated to work hard.  

Whether it is weights in the pool, using rings to work on flexibility, and coordination, or jumping the "waves" to help build muscle during the open swim sessions, aquatic therapy works for Jackson. 

Michelle, or fearless leader.

Jackson even worked on balance.  Who knew you could hit so many of his target areas in just one session.

Because Layton Surf and Swim is wheelchair accessible, aquatic therapy is a great option for those in wheelchairs.  Some of Michelle's clients before and after Jackson's session used chairs.  The water is a perfect way to stretch those tight muscles and to give little bodies the freedom to move. 

One other great perk is with regards to insurance billing.  For us, aquatic therapy was billed to our insurance as a form of physical therapy and made the therapy much more economical.

Whether it is at Layton Surf and Swim with Mountain Land or with a therapist at your local pool, we highly recommend you check it out.  I just wish I would have known about this therapy option years ago.  Therapy is once again, FUN!

Caring for Siblings of Special Needs Children

Original article can be found here.

A few years ago, our family of five headed to the zoo for a birthday celebration for our youngest. It was a hot, busy holiday weekend. Within minutes of pulling into the parking lot, my oldest, who has been diagnosed with an autism spectrum disorder, was begging to leave. His sister was, naturally, crushed.

Until we had that first conversation about her brother's condition, all she understood was that she wouldn't be seeing the elephants that day. My son cried all the way home, not because he was in distress, but because he felt terrible that his sister's dream birthday plans had changed.

 So, how do you turn situations like this into a positive experience? How do you strengthen the bonds between siblings when one of them has special needs? What's the right way to encouragehealthy relationships with all of your kids, and help them do the same with one another?

It's an ongoing process, but it begins with a good foundation. Here's how to start.

Make time for each child as an individual. They crave a connection with their siblings that may be difficult for any number of reasons, and they need one-on-one time with their adult caregivers as much as any child.

Make sure your children know that your child with special needs isn't more important than his or her siblings. Keep play dates, enjoy campouts and attend dance recitals. In order for your children to grow as confident, secure individuals, these childhood rites of passage should be honored with your full support and attention. You may not be able to do it all, but you can make sure that you make commitments to each child and stick with them. It builds trust, shows unity and respect for your kids, and helps them understand just how special they all are.

Explain the nature of the special needs of your child to his or her siblings. Encourage them to ask questions and listen to their concerns. Stay open and positive; your demeanor and attitudes will impact the way your children understand this information. Using age-appropriate terms and approaches, invite your children to explore the nature of the condition.

Each child plays an essential role in the family team. To do that, they need to be aware of special considerations, abilities, strengths and limitations, and of their own unique contributions.

Acknowledge their feelings. Children with a sibling with special needs may feel jealous at times, resentful, angry, confused, hurt, and even rejected. These feelings aren't shameful and are perfectly normal. By allowing your children to communicate and express themselves in a healthy way when they're upset, parents are better able to address any issues that may arise.

Encourage your children to spend one-on-one time with their siblings. Beautiful relationships often have the simplest of rituals that bond us together. Remind them of the things they enjoy together (a favorite food or movie), support quiet times (reading to one another or doing puzzles together), and try to record these events with videos and photos when you can. When things become challenging, remind your children of these positive experiences.

Put it all together. We did eventually get back to the zoo, and we were all much better prepared this time. My oldest son held his little sister's water bottle and showed her the best vantage point from which to see the baby elephants. They'd worked it out…with just a little bit of help from mom and dad.

Finding ways to enrich our relationships with our children and taking steps to ensure that siblings have good relationships with one another is something for which every good parent strives. When a child has special needs, this requires us to be that much more resourceful. Like all parenting, however, the right approach can help turn these challenges into opportunities for enrichment and growth.

Content by Kimberly Morgan.

Purchasing "things"

I did not write this.  Nor did I know Mitchell.  But I will tell you that this little boy and his family have forever changed my life.  I read his life story on their facebook page (https://www.facebook.com/#!/mitchellsjourney?fref=ts) and it is like they are looking straight into my heart.  As a mother of a chronically ill child who has a incurable terminal disease, these exact thoughts have crossed my mind many times.  But then I thought it is a good theory for everyone to live by.  Just something to ponder.  Here is the excerpt from Mitchells Amazing Journey on FB. 

"

MOMENTS THAT MATTER
Two days before Mitchell was admitted to the hospital for heart failure we decided to take our kids sledding near Park City. In my entire professional career, work was never more demanding than it was at that particular time. But I decided to delegate tasks and invest energy in my son, who I sensed was about to get very, very sick. If only I knew how fatally sick he would soon become. But we didn't know …. I just sensed time was running out. And nothi...ng else mattered.

Sledding that afternoon was so much fun. Mitchell had the time of his life. And when everyone was cold and tired and wanted to go home, Mitch asked to go on a few more runs … which we did. His appetite for life and adventure was nearly insatiable – which made his diagnosis of Duchenne Muscular Dystrophy an even greater tragedy and bitter irony.

Later that evening, after the sun had set, we drove into the valley for pizza and by that time Mitchell was beginning to get sick – the kind of sick you don’t recover from. The kind of sick that kills you. At first the signs of heart failure were invisible. He simply didn't eat anything. He just sat there with a smile on his sweet face. As often as we asked him to have some of his favorite pizza, he turned it down saying he wasn't hungry. We even ordered an extra pasta dish we were sure he would love, but he turned that down, too. We had no idea his heart was becoming catastrophically sick.

What you see here is a capture of the last physical adventure Mitchell took in mortality.

I had a Stake President (a leader in my church) who once said in a meeting: “Don’t ever apologize for taking your kids on vacation or purchasing something you can afford; there’s nothing wrong with that. Purchase ‘things’ with money. But whatever you do, don’t purchase ‘things’ with time.” I immediately saw the great wisdom in what he taught . . . his point was the proverbial “things” people are tempted to chase after … the boats, cars and houses and other trivialities people work so hard to pay for have the potential to cost much more than money. And all too often that is what happens; without realizing it, people pay too high a price with the one currency that cannot be saved, traded, borrowed, or exchanged: time. And time is the greatest currency of all. There is so much we can do with time – if we invest it wisely.

This photo is a reminder of moments that matter. This investment of time with my son will pay dividends for years to come. Had I not listened to my heart I would have been paying emotional penalties and interest for a lifetime. I am grateful I don’t have to pay the price of “what if”. I saw a moment and I invested time in it. No professional advancement, no amount of money, no material possession has the same value as this memory has with my son. There is simply no comparison.

Relationships with family are the most important investment. Anyone that tells you otherwise is selling something … and it’s not worth the price."

Tyler Perry Comes to the Rescue for Woman with Cerebral Palsy

I was happy to stumble across this story.  The original article can be found here  but I found it on Cerebral Palsy Family Network.

People are good.

~*~*~*~*~*~*~

 Georgia woman with cerebral palsy is getting some help from a celebrity filmmaker after he saw a Channel 2 Action News report about her van being stolen.

Atlanta-based media mogul Tyler Perry called Channel 2 and said he wanted to give Alicia Day a brand new van, just minutes after seeing her story air Monday afternoon.

The family of the 24-year-old said someone stole her specially equipped van out of their driveway sometime Sunday between 7 p.m. and 9 p.m.

Day, who’s in a wheelchair, had no idea how she would get around. Despite her disability, she told Channel 2′s Diana Davis she prides herself on trying to be independent, working part-time as a greeter at Home Depot. Her mother, Hannelore Day, also relies on the $60,000-van to take Day to work and to doctor appointments.  But now transportation is no longer a concern thanks to Perry, Day said.

“My mouth just dropped to the floor when I heard his voice,” Day said about her reaction to Perry’s call.

Her father, who answered the phone couldn’t believe it was Perry.

He said, “Excuse me, who do you want to talk to? Who is this now?,’ Day’s mother said.

Her mother said she didn’t realize the report about her stolen van would make such a difference.

After seeing the report, the Home Depot, is also pitching in. Day’s co-worker donated $5,000 to help with her medical expenses. She’ll meet the company president Friday.

As for the missing 2000 Chrysler Town and Country van, it has DeKalb County handicapped plates with license No. DP0229.

Eye Control to go mainstream

Could eye gaze systems become mainstream?  It certainly is an exciting possibility for many people with disabilities who need alternative means to access communication, computers and other systems.  Listen to this NPR clip to learn more about how companies are working to bring this technology to the mainstream.

http://www.npr.org/blogs/alltechconsidered/2012/12/03/166244876/in-eye-control-a-promise-to-let-your-tablet-go-hands-free