Ryan has had an impact on our family. He is the son of one of Ben's former teachers and has Down syndrome. Our families have become friends, doing things together and looking forward to one another's company. If I did not have their friendship, I would be in the dark about Down syndrome.
When a petition about National Down Syndrome Awareness Month was brought to my attention last week, I did not hesitate to add it here. Please take a minute to look it over and see if it is something you want to support by digitally signing the petition.
Feel free to share with others through email, Facebook or on your own blog. The people behind this are working hard to get the word out, and as we have all learned, social media is the way to do it.
"Dr. Kinder is mother to 8 year old Ella, who has Down syndrome. For the past 8 years Dr. Kinder has been on a mission to change the way Down syndrome is viewed and how the medical community responds to it. Right now we have a Petition to request that Medical Students receive a more thorough understanding and training relating to Down syndrome. Down syndrome is found in about 6,000 babies born each year in the US."
I probably have already featured the Miracle League one too many times for any reader's liking, but here I am doing it again. Remember at the end of "How the Grinch Stole Christmas" when the narrator says, "the
Grinch's small heart grew three sizes..." That is what it feels like at these games, my heart grows. It is hard to explain, unless you witness it yourself.
There is an overwhelming feeling of love, gentleness and caring at these games. Call me hokey...but do so behind my back and after you have attended a few games and don't feel it yourself.
This week, it started with an early call from a friend whose son is also on one of the teams. She was calling to say that the photographer was fabulous. The professional photographs for team and individual photos were scheduled for this day.
At the field, I witnessed those moments that individually are important, but together, in a short one-hour time frame, they make my heart swell.
The photographer getting emotional after I passed on my friend's compliment to her.
The volunteer steering the player to first base as he tried to run in a different direction.
The unexpected big hit by the player and the reaction of the crowd.
The spectator sitting near me, cheering every child on, no matter what team. He gave them encouragement each time they did not hit the ball.
The photographer taking the extra time with Ben to get an extraordinarily good photo.
The last player making her way to home plate, using her walker, taking her time because she has to, and no one getting impatient.
Ben's teammate saying goodbye to him.
At this rate, my heart may bust through my chest, but lucky for my readers and me, we only have two more games.
The Federation for Children
with Special Needs provides information, support, and assistance to parents of
children with disabilities, their professional partners, and their communities.
We are committed to listening to and learning from families, and encouraging
full participation in community life by all people, especially those with
Isn't every kid special? We
think so, but what do we mean when we say "kids with special needs"?
This means any kid who might need extra help because of a medical, emotional,
or learning problem. These kids have special needs because they might need
medicine, therapy, or extra help in school — stuff other kids don't typically
need or only need once in a while.
children are born with special needs. It is important to address the issue as
soon as possible. Emerging research indicates that a child with a
disability is more likely to be physically or verbally bullied than his
typically developing peers.
One of the moms from Ben's baseball team is
running a raffle to raise money for the Miracle League. Please contact
Wendy Batley directly at firstname.lastname@example.org to work out the details for
payment and prizes. Her son, incidentally, is the very talented announcer
for the games when he is not playing for the Braves.
The stress of coming up with costumes for Halloween stresses me out every year. As the kids get older they have more ideas and take more responsibility deciding who they want to be and how to get that certain look. Ben's costumes need to be simple -no masks, hats or anything he can take off and eat.
Before I had a chance to even think about Ben's costume, Logan came up with an idea - Professor Xavier from the X Men. Professor X is in a wheelchair and is one of the most powerful superheroes in the X Men comic book and movie series. He wears a dark suit which is easy enough to find and very Ben friendly. Logan wants to shave Ben's head to finish off the look, but that's not happening!
Many people have mentioned that there are sites for creative Halloween Costumes for wheelchairs - here is one: Halloween Costumes
If you have other sites, please send them to me. Or even better, if you have a photo of your own creative costume for wheelchairs, send that to me. I will post for others to see and copy!
Ben played in our county's Special Olympics Bocce Ball Event yesterday. Lots of athletes, teachers and volunteers were in attendance. The highlight for Ben was having his brother, Logan there. Logan played hooky from school to see Ben participate.
On the way home, Logan made a few observations about kids with special needs - "some are like zombies and some are just normal." He decided that Ben was medium. We also talked about what Logan's friends at school say about Ben. Logan could/would not give me details about their questions, but he said that he answers their questions and then tells them a little about Ben.
I asked Logan if he would ever want to meet with other kids who have brothers and sisters with special needs. Incredulously, Logan said, "Why would I want to do that?" I told him about programs where he could talk about any feelings he may have about having Ben as a brother. His response, "No Mom. I like Ben." I guess that answers it all.
Not having a sibling with special needs, I cannot begin to understand or comprehend what Logan feels, thinks or how he processes his world with Ben. He has been exposed to so much more than I ever was as a child and his emotional awareness is more developed than most kids his age. Any sibling jealousy and anger, love and support is divided evenly between Ben and Sean.
The most disappointing thing of the Bocce Tournament for Logan was Ben taking the Bronze. He was really hoping Ben would at least get the Silver. Basketball and walking events are later this school year - he better start Ben on a training program now.
No, I did not mistype the title of this post. The jury is not out anymore, I think Ben would rather be a spectator than a player in this sport. When he is in the dugout, he looks longingly at us sitting in the stands. When he is in the outfield, his complaints reach us from across the field. Just three more games and Ben can put in for retirement.
Although, I am not giving up on Ben's athletic career. One friend whose 14 year old son, Ryan, plays baseball on another team is having the time of his life. He made a home run last week and it was all I heard about from Logan. However, there was a time when Ryan played soccer and was so disinterested in the sport. His mom thinks his age has something to do with the change in interest. This gives me hope! Perhaps maturity or a change in sport may help Ben's perspective. We will just have to wait and see.
A few months ago, I mentioned that a company called Gene DX was running a Comprehensive Epilepsy Panel on Ben. I was not hopeful that anything definite would come back, but the price was right and a little blood letting was not going to hurt Ben.
The results were interesting, yet, not significant, nor remarkable, definitely not a diagnosis. Basically our letter told us that Ben tested "positive for a mutation on the MECP2 gene which is on the X chromosome. Mutations in this gene result in Rett's Syndrome in females and neurodevelopmental problems and epilepsy in males. However, his mutation is in a location that has not been previously associated with disease. Therefore, significance is unclear."
When we meet with the neurologist, I will get a better idea if there are next steps to take - as in more tests. If they are more invasive or expensive, we will probably just drop it for now. Nothing will change about Ben's therapy and care. I have thought for a long time now that whatever Ben has is Ben's own special syndrome or disorder. It probably occurred sometime at conception or early development in the womb. When you think about how many things have to happen to make a human being perfect (in the typical sense), there are times when something does not go exactly to plan and a "mutation" occurs.
I will take my not-so-little anymore Ben, mutations and all. And I will not hold my breath waiting for a diagnosis.
I remember when I applied for college, everyone talked about all those scholarships and grants available to pay for tuition, room and board. I never found them, but I am sure if internet was available way back then, I may have had a fighting chance.
Here are more sites sent to me for funding communication devices, medical expenses, etc. Some have links to other sites. It will take time to read through guidelines and complete paperwork, but I truly believe that the hard work can pay off. I am currently working on an application to help us pay for Ben's medical insurance. A friend sent me the link and it seems that we may fit the criteria. It is a pain to get all the paperwork together, but if it saves us thousands of dollars, it will be worth it.
Good luck and send us any suggestions and sites that you may know about:
Small Steps in Speech - Small Steps in Speech assists children with speech and language disorders by funding supplemental therapies and treatments for individuals as well as grants to charitable organizations who serve children with communicative disorders. Our goal is to give children the chance to better express themselves in the world in which we live.