Awareness, Understanding and Acceptance

I was talking to an acquaintance the other day about Dominic.  This gentleman knows that he has Autism.  During the course of our conversation he said, "so, he's a genius, right?" All I said back was, "well, he can play the piano!" Yikes, looking back on that conversation, there were so many things I could have said instead. Like, how about Autism is not the same for every child or adult?  Lately, I feel like I'm in "unchartered territory" with Dominic. Given that he is well past 11 years old, I am almost 100% sure he is going through puberty. So many emotions and hormones are swirling around these days around Dominic that I feel like I am caught up in a tornado! We work all the time on getting him to tell us his feelings. This morning he kept saying, "James got stung on his nose by a bee!" I asked him to show me in the Thomas the Tank Engine book he was looking at where in the story James got stung. Sure enough, there was a part in the story where a bee stung James on the nose. Dominic said, "he needs a Band-Aid!" For Dominic to recognize that James was hurt and needed a Band-Aid was HUGE. I then said, "how did James FEEL after getting stung?" Dominic said, "sad." A common misconception about children and adults with Autism is that they have a hard time with emotions, both regulating and recognizing them. Yes, some do, but not all. I love that Sesame Street recently introduced a character with Autism!  I also love that Dominic's school is again having a peer-to-peer program this year. It warmed my heart when I got an e-mail from Dominic's teacher telling me that over 100 children wanted to sign up (for the second year in a row)! How cool is that? If even one child goes home and tells their parents about the children in Dominic's class that in itself is helping to start the "conversation." No one in either my family or my husband's family has Autism. My own dad has gone from not really knowing how to talk and act around Dominic to becoming one of his biggest supporters.  It has taken years, but I know that they both have a lot to "teach" each other. It has been almost nine years since we were given the diagnosis of Autism for Dominic. Do I think I know everything there is to know about Autism? No, I do not. Are some days more challenging than others? Yes, they are. I do know this though. With awareness, comes understanding and with understanding comes acceptance.

Airplane Etiquette

Since my parents have gotten older, I have made more frequent trips back to Maryland. In the past five days, I have flown on four planes. Based on my most recent flying "experience," I feel that an airplane "etiquette" post is in order. To the gentleman on my flight from Lansing to Detroit last Friday, I sincerely apologize that I was accidentally in your seat. It was early and I said I was sorry. I could have done without the "dirty" look, though.  Good grief man, it was 5:30 a.m.! On all four of my flights, I was in the aisle seat. That provided me with quite a bit of entertainment. Fellow passengers - please, please, please measure your bags before you leave to come to the airport, especially if you plan on them being your carry-on "item." To the gentleman who pushed his chest into the side of my head while struggling to fit the suitcase into the overhead compartment on the flight from Detroit to Baltimore, I'm so glad you decided to wear deodorant that morning. If you are waiting in line for security and hear someone behind you saying their flight takes off in 20 minutes, and yours doesn't take off for more than an hour, let them go ahead of you. I have missed a connecting flight and trying to reschedule can sometimes be very difficult. Consider it your good deed for the day. Some airlines don't provide complimentary snacks, so when I fly, I like to carry my own. To the person who was sitting behind me from Detroit to Lansing yesterday afternoon. I know you must have been hungry, but I'm curious as to why you waited until we were landing to pull out your lunch that smelled like it had an entire raw onion on it.  The flight was just 20 minutes long. The onion "fumes" had no where to go. The smell was so strong that I was tempted to pull down my oxygen mask. When the plane has landed and you are getting ready to exit, please take your turn. Let the people in front of you go first.  Finally, when you get to the moving carousel to pick up your luggage, stand back just a tad until you see your bag(s). Blocking the carousel so others can't get around you is not really polite!

The Middle of the "Sandwich"

Yesterday afternoon, while I was on hold with a dentist's office, trying to get Lauren an appointment, the call waiting on my home phone beeped in. I didn't answer it because I really needed to finish my conversation with the dentist's office. Well, I guess I should have answered it because it was the social worker at my mom's care facility. After failing to get me on our home phone, the social worker called my cell phone. I picked up the call on my cell phone and the social worker said, "I'm calling about your mom." I said, "I'm on hold with my daughter's dentist's office, is my mom okay? is it an emergency?" She said, "it's not an emergency, but it is urgent."  Yikes. I had my home phone against my left ear and the cell phone on my right ear. In that moment in time, I literally was in the middle of the generation "sandwich." I was helping both my daughter and my mother at the same exact time!!

How many of us between the ages of 40-60 years old are helping to take care of our parents or an elderly relative (at home or in a care facility) AND raising our own children? It's quite the balancing act isn't it? I think of myself as a circus "juggler" with many "balls" up in the air, trying not let any of them drop. The most important thing I think to remember is that you are only one person and you can only be in one place at a time.  You have to take care of yourself, emotionally and physically. Try not to let yourself go to the bottom of your priority list. Talk to friends who are going through the same things and lean on your spouse or partner more for that much needed support. I have been wanting to fly back to Maryland, because the past two or three weeks, I have noticed a significant mental decline when I've been talking to my mom on the phone. She is aware enough to realize this is happening to her, which makes it all the more heartbreaking.  I have been in a "holding" pattern and hesitating to book a flight, because based on Dominic's two seizures he had in June, he had to get an MRI. Last Tuesday, I heard from the neurologist that he was fine. That evening, I booked my flight. I am super blessed by my husband. He will assume the responsibility for taking care of Dominic in my absence. This is not the first time I have had to fly "solo," but as Dominic becomes more verbal, he is able to put into words how he feels about me leaving.  He is very into the calendar and his "schedule." Before I could tell him I was going to be gone,  he noticed it written down on the family calendar. I told him that Grandma Martha was "sick." No less than three or four times a day since then, he has been saying, "Mommy leave for Maryland and Daddy will take good care of you." This morning he said, "Dominic go to Maryland." I had to gently remind him that I was going by myself. He then said, "good-bye mom."  I really had to restrain the tears for that one. Sigh.

Believe

As a new disability ministry in the area, we have a lot to prove. We have to show that what we do is helping others AND is needed.  As program director, I am constantly looking for different programs for our “special” individuals and families. Since April, we have had three special needs Masses, two worship services, a picnic and just recently, a music event at the Michigan State University Community Music School.

Our average attendance (not including the picnic) has been holding steady at about 30. The picnic surpassed all expectations and we had about 100 people! One of the gals that brought some wonderful individuals from a group home to the picnic, told me to my face, “there isn’t much out there for older disabled adults to participate in.”  Hmm, I found that quite sad. My son is just 11, but in seven years he will be an adult. The thought of him having very little programs and activities available to him when he reaches 18 is not a thought I like!  That’s why I’m glad the ministry is planning more and more activities all the time. We are not replacing programs that are available to the special needs community, but rather putting a program in place if there isn’t one currently there. Whether through the Masses, worship services or the various programs, it brings you together with others. When I see and hear all the talking and interactions at our activities, it is the most wonderful sound in the world! The smiles on people’s faces melts my heart. That feeling of belonging and not being judged is awesome. A few months ago, when I needed a singer for one of the worship services, I asked a gentleman from my church who also happens to be a Knights of Columbus member. He agreed to be a singer and has also brought a fellow Knights of Columbus member along a few times!! These men are generous with their time and with their “gifts” of music. They also have gotten a firsthand look at the impact our ministry is making. They believe in us and in what we are doing. Earlier this week, a Knight who has visited our disability ministry office a handful of times and has had meetings with us, gave us the good news that he had a donation for us!! Our first one! Wow, how awesome! Evidently, the wife of a Knights of Columbus member who had passed away recently, donated a sum of money to be used at their “discretion.” Well, this group of wonderful men decided they would donate it to our ministry!! Yes, they believe in our mission and what we are trying to do. What a great feeling that is!!!! Oh and guess what? The gal who told me at the picnic that there weren’t many programs and activities available for the older special needs adults is bringing eight residents from the group home to our bowling event in a few weeks! Yep, if I do say so myself, we are filling the need.