Celebrating the Abilities of our Angels

By Angela Humble Tucker, Mom to Lukas age 15

lukas1It’s hard to believe that we have a 15 year old son. Our son does not do all the typical things that a 15 year old would be doing such as video games, hanging out with friends, talking on the phone (or I guess texting), or competing in High School sports. Instead we have a 15 year old boy who has Angelman Syndrome which brings with it limitations such as non-verbal, limited mobility, cognitive delays, and more issues that would take up too much space to list.

Our 15 year old boy Lukas however smiles more than a typical 15 year old boy! Lukas is a 10th grader at Shakopee High School and is a brother to a one year old Brody. Lukas enjoys people, being out in the community (everyone knows his name), and has a hug desire to help others. Overall he is a great kid who has been dealt with many challenges.

Our lives changed greatly June 23rd 2006 in morways that I can express at this time.  As parents we are left with many tough choices and those choices are greatly impacted further when you have a child with a disability. We made a decision on June 23rd to take away our sons wheelchair and just encourage him to walk and not rely on this chair any longer. At this time he was only able to walk about 20 steps before needing to rest.

Back in 2005 our son Lukas had surgery to release the tendons in the back of his legs in an effort to get him walking. Lukas had never walked despite efforts of Botox, therapy, and encouragement.  This was essential our one shot at getting him up and about. With the success of the surgery and lots of hard work we decided to just take away the chair and never look back. As parents I think we can say we got this one right!! Our 8 year old boy at the time learned to experience life in a whole new way.

It was not an easy road to get Lukas to walk successfully there have been many bumps, bruises and arguments along the way.   In 2008 we begin to get Lukas involved in as many activities that we could find to keep him moving and motivated. He started to play for the West Metro Miracle League baseball.  What a great opportunity for him to interact with others and to learn to be active.

lukas2

I remember the first couple of years Lukas played baseball once he made it to home base he looked at the crowd and clapped his hands as in a way for him to communicate to the fans to cheer for him. The first few years it would take him a while to get around the bases. Now with some encouragement we can get a little run out of him.  Lukas has been playing for the Miracle League for the last six years. He can now hit the ball without a tee. I highly recommend this program if you have one in your neighborhood it’s been life changing for Lukas.

A few years ago I signed Lukas up for soccer through the adaptive soccer program at the school district and he played for one year. There were too many rules for Lukas to play in the program. After working with our local soccer association we found out that Minnesota has a Top Soccer program for kids with different disabilities. Top Soccer does not have as many rules and different activities to meet the needs for each player.  The soccer association and I brought this to our city and Lukas is now a soccer player as well.  He has been playing soccer for the last 3 years.

lukas3

Lukas also participates in Special Olympics bowling and bocce ball. Lukas especially enjoys the bowling and has his own Chicago Bears bowling ball!

For Lukas these sports programs are keeping him connected in the community and making friends. As parents it’s about those same things however; we are trying to ensure that he is staying activity and on his feet.

When Lukas is not playing a sport you can often find him at a local high school game such as basketball or football. Lukas enjoys watching as much as he participates. He currently has created a great relationship with the High School girls’ basketball team. They are all so thrilled to have Lukas at the game and they make the effort to come say hi to him at each game.  Attending these different games for Lukas is another way for him to be connected with classmates, teachers, and community members.

lukas4

Lukas is also attends the local STARS club which is an opportunity for teens in with disabilities to “hang” out in the community with their peers. Lukas loves and looks forward to each of these events.  Needless to say we are very busy taking Lukas to and from different activities but I really wouldn’t have it any other way!

Lukas has made us very proud to see how much he has accomplished over the years in his ability to walk (we are almost at a good run).  He is able to interact in so many different ways than when he was in a wheelchair. There is always the concern with the doctors and us that one day Lukas will get too tall and will again need the wheelchair so at this time we are grabbing at every opportunity to keep him active.

As a non-verbal kid this brings about so many challenges, questions, and behaviors. Lukas has his own language that we as parents can understand most of the time. Communicating to the outside world is much more difficult. In hopes to close that gap we have Lukas use an IPad for communication. He is currently using the MyTalk app and is pretty successful for the most part. Anytime you have a device speak for you your language is limited.

What is great about the MyTalk app is that we customize this for Lukas with his pictures, favorite things, what he does in school, and etc.  The IPad for him is much more portable now that he is not in a wheelchair. Lukas is motivated by electronics so this was a good choice for us. I tend to find the biggest challenge for Lukas is when others don’t know how to use the app or know that the app is there. This creates frustrations and behaviors for Lukas.

Lukas can also communicate using some sign language and by answering yes or no questions. In 2010 Lukas finally spoke his first work which was Mama. Trust me when I say this completely melted my heart and I still love to hear it even if it’s a thousand times a day. Lukas continues to go to speech therapy.  Often times I’m at a loss with communicating with Lukas. It’s just breaks my heart when he is sick and just can’t communicate to me what is wrong. Or holidays and birthdays when he can’t communicate a present that he would like.  I do worry about the future and Lukas’ communication needs when we are not around. Having a child with Angelman Syndrome or a disability is not something I imaged in my life. There are so many struggles that come with journey we are on. The struggles are truly only known by those who have or are walking in our shoes. The older Lukas gets the harder the struggles seem to be.  It’s amazing to me how much before Lukas we took for granted. Now we treasure every moment big or small and are so thankful for what he can do! We are so very blessed to have this sweet boy (teenager) in our lives to show us the little blessings that we would have probably just taken for granted.