Wednesday, November 11, 2015

To the Pediatric Neurologist Who Goes the Extra "Mile"

When it came time to see a pediatric neurologist (Dr. F) after Dominic's seizure in June of this year, all I knew was that we were going to have to drive 60 miles to his office. When Dr. F was able to work Dominic into the schedule to get an Electroencephalogram (EEG) of his brain the same day we went to Dominic's first appointment because he didn't want us to have to drive two hours round trip to see him again, I thought that was pretty cool. When I got home from that appointment and found a phone message from Dr. F telling me to call him back because his EEG showed, "intermediate activity," he took the time to explain to me what that meant.  When I called Dr. F after Dominic's second seizure, he highly suggested we put Dominic on an anti-seizure medication. As you can imagine, I had many questions. Every single e-mail or call I made to Dr. F was answered promptly, sometimes within an hour.  After talking it over with family members, friends and Dominic's psychiatrist, we made the decision to put him on the medication. It was not a decision my husband and I made lightly, given that Dominic will have to stay on the medication for at least two years.

When Dr. F told us we had get an MRI of Dominic's brain with sedation, I asked him to redo the order so we could try it without sedation.  After that was unsuccessful, Dr. F redid the order, so we could do the sedation and MRI at the hospital near us.

When the radiologist at the hospital found something on the MRI and told us that Dr. F would need to review it, he took the time to call me himself with the results. Thank goodness, it was a "non-specific finding." Whew. This past Monday, when we went for a checkup with Dr. F, we got the same nurse that we've had before. She doesn't treat Dominic any differently, just because he has Autism, she treats him just like any other 11-year old boy, which I sincerely appreciate. Gone are the days when Dominic would raise a "ruckus" about getting his blood pressure taken. The nurse explained every single thing she was doing and he did awesome! When Dr. F came in to examine Dominic, he spoke directly to him and slapped him a "high-five," every time Dominic did what he asked him to. I was so proud of Dominic, there was only one question he couldn't answer himself. When Dominic reached his hand into Dr. F's black medical bag, Dr. F didn't get upset, but rather said, "we don't need anything in there right now, Dominic." After Dr. F finished the examination, he sat down, looked at me and said, "so, do you have any questions?" After he answered my questions, he then told me that we don't need to see him for another six months! Shortly after I got back home, I sent an e-mail to Dr. F expressing my gratitude. This morning, he wrote me back telling me, "thanks for the kind words." No, Dr. F, thank you for going the extra "mile."

Monday, October 26, 2015

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.

Wednesday, October 14, 2015

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!

Tuesday, October 6, 2015

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.

Friday, October 2, 2015


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.

Friday, September 18, 2015

It's My Turn to Help Take Care of You Both

When my husband accepted a job in Michigan in December of 2001, I knew moving away would not be easy for my parents. I've always been very close to them.  It's really, really hard to put into words what it is like to be 600 miles away from my parents, given that my mom is so ill and in a skilled nursing facility. Around last Christmas, the doctors were telling us she had just a few months and to prepare for hospice care.
Well, my mom has defied the odds.  Last night, when I was talking to her on the phone though, she was very confused. It truly breaks my heart, because she is a very smart woman.  Given that she has end-stage congestive heart failure, not enough oxygen is going to her brain. I feel like every time I hang up the phone after chatting with her, I've lost another piece of  the "old" mom. This whole experience of putting my mother into a skilled nursing facility has been difficult for everyone involved, but definitely the hardest for my father. My mom had always cooked the meals and taken care of the house. My dad has a wonderful caregiver who is AMAZING and comes in four hours a day, five days a week. My father also wears an emergency alert system around his neck and recently got a keypad installed for his garage. Since he does not want to move out of his house, we have put safeguards in place for him. I keep in constant contact with the staff where my mom lives and I call my dad every night. Earlier this week, my father was thanking me profusely for helping him set up a doctor's appointment for my mom where she needed to be transported in a specialized van. I told him, "you and mom took care of me growing up, now it's my turn to help take care of you both."


Thursday, September 10, 2015

I'll Miss You

This past Tuesday was Dominic's first day of sixth grade. The hubby, Lauren and I were all part of the send off "crew." Shortly before his bus came to pick him up, we were explaining to Dominic that when he came back home (he had a half-day), Lauren would need to leave to go back to college. Both Lauren and I saw the tears welling up in his eyes. Even though Dominic has Autism, and a "classic" symptom of Autism is "impaired" social interaction, he is one of those kids that wears his heart on his "sleeve."  You can tell by looking at him how he is feeling.

The "kids" were able to spend an hour or so together and then she had to pack up. Dominic really did not want her to go. He even went over to his daily "schedule" and crossed off, "Lauren go back to college," which I had written earlier in the morning. I said, "Dominic, did you think if you cross it off, that means she would stay here?" He said, "yes." He also kept saying, "Lauren go to college, then Lauren come home." Shortly before she left, Dominic said spontaneously to her, "I'll miss you." Good grief, I needed a BUCKET of tissues!! Pretty much every night when I am doing the evening call to my dad, Dominic will come in and say, "I want to talk to Grandpa Mike!" He will also talk to my mom, "Grandma Martha." Dominic repeats the same thing over and over to them, but they don't mind. I'm just glad that he does it spontaneously! Since Lauren has been gone, Dominic has been saying, "Grandma is in Heaven." He is talking about my mother-in-law who passed away in 2011. I think in his mind, he is trying to reconcile being separated from Lauren.  Dominic saw a lot of my mother-in-law both when she lived in Cleveland and then when she moved to an assisted living facility near us. I have believed since before Dominic became verbal and also now, that even though we don't think he can hear us, he definitely does. He "files" away certain information for use at a later date. Lauren is so in tune to Dominic that she thinks (and I agree with her) that he is just now coming to terms with the fact my mother-in-law is gone and not coming back. That's a hard thing for an adult to adjust to, much less for a child with special needs. I told Dominic that Lauren has left, but will come back. It's much, much harder to explain that his grandmother is not.

Even though Dominic's private speech therapist has only been working with him a year, she knows him pretty well. She told me with increased speech there will be highs, but also emotional pain. I totally agree with that. Now that Lauren is back at school, we will start talking to her on Skype once a week, just like we do with my stepson. I'm hoping that helps with the separation!