Tuesday, December 22, 2015

Why We Participate in Research Projects

One of the very first things I did when Dominic was diagnosed with Autism, was look on the Internet for information. Oh my.  There wasn't just a few hundred resources that popped up, but about 15 million. Yikes. That's completely unrealistic to think anyone has the time to wade through all that information. I remember VERY vividly feeling 100% completely overwhelmed. Living close to a large university definitely has its "perks." After looking through the Autism Speaks website under the research section, I found a study going on that Dominic met all the qualifications for at the newly opened Autism Research Lab. I knew I wanted our family to participate, because as we all know Autism affects the ENTIRE family. Could I have decided not to have our family participate? yes, we all make choices we are not 100% sure about. Wow, am I glad that I reached out to the gal in charge! To this day, she and I are really good friends! We actually just went to a "reunion" with other families whose children have also participated in research studies. What a great time Dominic had!


I had a great time too :) One thing I have never been hesitant to do is share our family's experiences with Autism. Why not share? There is still so much to learn about Autism. There is a saying, "if you have met one person with Autism, then you have met one person with Autism." Since Dominic has had three seizures since May of this year, he is considered to have Epilepsy. Considering I knew NOTHING about Epilepsy, I have been digging "deep," into that world of research studies also. Earlier this summer, I received an e-mail from a gentleman who works in another part of the large university near our home. He was looking for participants for a research project in the Fine Neurodevelopment Lab. Dominic met the qualifications, so we went over on a Saturday morning and participated. Just for the heck of it, I told this gentleman about the disability ministry I am involved in and how we had a picnic coming up later in July. I asked him if by chance he was available to volunteer. He came early and stayed late! He and I stayed in touch and in November, he sent me an e-mail saying he wanted to "interview" me for a paper because he thought I would be able to bring a really great perspective as a "mother who is an active and informed member of the community." He and I had a really good exchange of information. I told him that I knew virtually nothing about Autism and puberty, so he forwarded some information to me! He and I also discussed Dominic's Individualized Education Program (IEP). I told him that at one of the IEP meetings about five or so years ago the speech therapist kept repeating how below average Dominic was.  Later, I talked to the speech therapist and told her that as special needs parents we hear that frequently. I asked her that when she talked to families in the future, maybe she could toss in a few "positives" here and there. It would mean a world of difference to parents. At the time, I was thinking, did I overstep my bounds? Nope, she said she was glad I spoke up. After he finished the interview and left, we exchanged an e-mail where I told him I thought I had really talked his ear off! He wrote back and said, "you gave me a ton of good information for my project. I learned a lot of great things for myself as well (such as not using the negative terminology (below average, etc) and language I use when showing reports to parents)." He recently wrote me saying there is another research project Dominic qualifies for. We are getting together in January! Awesome. 

Wednesday, December 2, 2015

Creating Opportunities

Dominic was so excited for today!  He and his sixth-grade classmates were going to a movie at a movie theater! What's really cool is that he will be able to order his own "snacks."  I asked him what he was going to eat.  He told me, "popcorn and pop!"  Wow, what an incredible opportunity for Dominic's class, don't you think?  When I was in sixth grade, the special education students were kept so separate from the rest of the school that we rarely saw them, much less have any interaction with them. The administration at Dominic's school goes above and beyond to make sure that he and his classmates always feel "included." Back in October, I got this e-mail from Dominic's teacher:

"I printed out 100 sign up forms for peer-to-peer this year and I got a call from the front office this morning telling me we ran out and I needed to print out more :)"

As if that wasn't cool enough, in November, I got this e-mail:

"I just got an e-mail from one of the 6th grade tech teachers, one of his groups is creating a PSA about choosing kind, focusing on Autism Awareness. The students were wondering if they could have Dominic participate in their video. It would be during his exploratory 4th hour.  I just wanted to see if him being in a video would be okay with you before scheduling anything!"

I was able to get a preview of the "script" the kids wrote. It was pretty darn awesome. I was incredibly impressed by their insight and understanding. Earlier this year, I became program director of a disability ministry. I am responsible for implementing and creating programs. Back at our picnic in July, we had a group of special needs adults that came after the food was gone and things were winding down. I instantly felt a "connection" to this group because they were just so happy to be there! They came to our bowling event in October and the gal that brought them told me, "thanks again for all of these amazing opportunities."


Dominic has been receiving music therapy for several years and I knew I wanted others to participate, so our ministry had our first music event in September.


It was so well received, I have planned another event for January!! We have had ecumenical worship services and at the beginning of November, we had our fourth special needs Mass - we had almost 50 people attending. We had three individuals with special needs doing the readings and Dominic was able to be an altar server! I am currently working with Dominic's private speech therapist on an instructional video so anyone who wants to be an altar server can!


I have many other programs in the "works."  In a few weeks, our ministry will be having a holiday event. Included will be a special needs Mass. I have gotten to know an awesome couple who have  a daughter with Down Syndrome. She has gone through all the preparation to receive her First Holy Communion. Her parents want her to make her First Holy Communion during the Mass. I feel honored and blessed that we have "created" this opportunity for their daughter. It will be a special day for sure! I can't wait!

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

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.

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!


Friday, August 28, 2015

Mastering Important "Life" Skills

I try to involve Dominic as much as I can when I am baking. Yesterday morning, we made pumpkin muffins. In the past, when it came time to measure the liquids or crack the eggs, I would do it. I decided that it was time for him to try it.  I showed Dominic where on the measuring cup he needed to fill it to and he did it exactly. Then, since we needed to crack four eggs, I let him do it from beginning to end. He has seen me crack probably enough eggs to circle the Earth, so he applied just the right amount of pressure and dropped all four eggs into a separate bowl,with NO shells!!  I gave him tons of verbal praise and he told me, "I did it the eggs, all by myself!" He was grinning from ear to ear and told me several times throughout the day about his egg cracking.  It may not seem like a gigantic deal to most people, but to me it was another "skill" that Dominic has mastered. Today, we had a "field trip" to the Kroger.  Long gone are the days that I would work myself up so much my stomach would hurt. It has taken many "field trips" to Kroger to get Dominic to the point he is now, where I actually enjoy taking him with me.


Dominic was totally fascinated by the metal water sprayers above all the vegetables. I told him that the veggies were getting a "shower." We went up and down pretty much every single aisle. He was very patient for the most part, though I didn't time it too well, because it was around lunchtime. When we got to the dairy section, Dominic spontaneously gave me a hug and then said, "I love you mommy, so much!" Think it might have been because we had tossed a frozen pizza into our cart for lunch?!?!?!  As we approached the checkout, there were two lanes open. I chose the lane that had my favorite bagger who has special needs.  Dominic helped take out the groceries and put them on the conveyor belt. As the last of the groceries were put into the bags, Dominic looked right at the bagger and said, "hi." The bagger said hi back to him :) As we were driving back home, I was thinking that just in the past 24 hours, he learned a handful of important "life" skills - how to crack an egg, measuring ingredients in a recipe and talking spontaneously to the bagger. Dominic has made huge strides in many different areas this summer. Asking for a haircut and getting himself to the bathroom when he needs to go are the biggest advancements for sure. In a little over a week, he will be starting sixth grade. He is no longer my shy little boy.


But rather a confident young man. I wouldn't have it any other way.

Tuesday, August 18, 2015

A "Sample" of My Cookbook Collection

This morning, before my husband left for work he said, "you like going through your old cookbooks, don't you?" The poor guy, I have my "collection" all over the place right now. They are next to my side of the bed, spilling out of the bookcase in the dining room and next to the computer! He's even tried to tell me I have enough cookbooks. Shame on him, right?!?!?!? He should know that after being together almost 25 years, I will NEVER have enough cookbooks!!! LOL.  Lately, I've been looking through the ones that belonged to my mother-in-law. She passed away in January of 2011 and we miss her all the time.


She worked for a number of years at the May Company in Cleveland, Ohio. One of the cookbooks I acquired from her, "Celebrate Our 1st Cookbook," I'm guessing was distributed to all of the employees around the holidays. I found some of the names of the recipes in the cookbook to be quite, ahem, different. These three kind of stood out to me - "Ham and Pickle Puffs," "Sneaky Pete Slush," and "Cranberry Velvet." Anyways, since I had no "bakery" around, I decided to make this cookie  recipe from the cookbook:

 
Oh, my goodness - the cookies were AMAZING! Here is the recipe if you would like to make them:
 
Chocolate Crispy Cookies
 
Ingredients:
 
1 1/2 cups white flour
1/2 teaspoon baking soda
1/4 teaspoon salt
1/2 cup margarine, softened
1 cup white sugar
1 large egg
1 teaspoon vanilla extract
2 cups crispy rice cereal
  (like Rice Krispies)
1 cup milk chocolate morsels
 
Preheat oven to 350 degrees and spray a large cookie sheet with non-stick cooking spray. Set aside. In a large bowl, put the flour, baking soda, salt, margarine, sugar, egg and vanilla extract. Mix well with large spoon and then add the crispy rice cereal and the milk chocolate morsels. I used my hands to mix everything together, so feel free to do that! Roll into 2 1/2 dozen equal-sized balls. Bake 15 at a time on a sheet. They do spread some, but not a ton. Bake for 15-18 minutes or until the cookies are starting to turn golden brown. Remove immediately to a wire rack. Store in a covered container at room temperature.
 
I like to play a little game with my Facebook "peeps." I'll post a picture and then try asking everyone to guess what the "secret" or "mystery" ingredient is. On one of the food groups I am part of, someone did indeed guess the "mystery" ingredient - crispy rice cereal!  One gal guessed hard boiled eggs!  I knew that I had seen a recipe using hard boiled egg yolks recently. After just a quick look through an old Slovenian cookbook (which is part of my mother-in-law's "collection"), I found a recipe for, "Vanilla Vienna Cookies." It uses two hard cooked egg yolks among other ingredients. The first line of the directions says, "cream together for 1/2 hour, butter, sugar, hard cooked egg yolks." Hmm, okay. A half hour? That seems a bit excessive doesn't it?? I want to make those cookies, but I don't think I'll cream it together for a 1/2 hour :) I'll keep you all updated how the cookies turn out! I also found a super duper easy recipe for "Slovak Potato Soup." That is one to try when the weather gets a bit cooler. My mother-in-law was part Slovak and so am I!

Wednesday, August 12, 2015

Why I Gave a $5.00 Tip to the Barber

Dominic has been to a barber shop exactly twice. The first time, my husband and I took him to the local Meijer barber shop and he gagged and cried so much, we had to leave. The second time, he bolted out of the barber shop and almost ran into the road. I have been cutting his hair ever since. I would have to get myself mentally "geared up" to give him his haircuts, because it would be so upsetting for the both of us. When he was small enough, I could put him in his booster seat, strap him in and cut away. Given that he is now over 120 pounds those days are LONG gone. This past Saturday, Dominic out of the blue started saying, "haircut, barber shop, socks and shoes, car." He probably repeated it at least half a dozen times. Every time he would say it, my response back was, "are you sure?" I tried to explain to him that once the barber started, he would have to finish. He was EXTREMELY persistent about wanting to go. He wore me down until I finally said, "okay, fine, let's go to the barber shop." We actually went back to the second barber shop we had tried about nine years ago. I parked the car behind the barber shop and we walked around to the entrance. I looked inside and there was at least eight people sitting there. I told Dominic, "okay, they are way too busy, we are going to have to come back another time."  I turned around and we started walking back towards our car. As we went past the side door of the barber shop, one of the barbers came out and approached us. I explained to him that Dominic had Autism and that he had been requesting a haircut all morning. I told him, "we can just come back another time, you look really busy." The barber then said, "come back in, most of the people are waiting for a certain barber to cut their hair." We came back in and Dominic and I sat down. It was quite warm in the barber shop and the longer we waited, the more anxious and sweaty I got. I was really starting to get concerned, because of all the noise inside the barber shop and the fact that we would have to wait.  Dominic was playing with his Nintendo DS that he recently got for his birthday and he was "chill." I was the one that was a nervous wreck! After about 15 minutes, the barber said, "Dominic, are you ready?" We both walked over to the chair and he started using scissors on his hair. I said, "let's try an electric pair if they aren't too loud."


The barber took the extra time to explain everything to Dominic during the entire haircut and Dominic trusted him 100%.  I found out after the haircut that the barber had previous experience with children with special needs.  As the barber rang us up at the register, I pulled out an extra $5.00 for a tip. I really wish I would have more one dollar bills on me! He did such a great job, don't you think? I think the smile on Dominic's face says it all.


I have had so many people tell me that Dominic's thick hair is his "trademark." Most people don't realize that I have always wanted him to have short hair, but since I've been cutting it and he would only sit still for a short amount of time, that has been impossible. On the way out of the shop, the barber handed me his card. I tucked it away into my purse and didn't pull it out again until a few days ago. The barber that cut Dominic's hair is the owner! Awesome. We certainly won't be waiting another nine years until we come back!!


Thursday, August 6, 2015

What I Learned From Lauren's First Year of College

Lauren moves into her on-campus apartment in a little less than three weeks. We have bought her textbooks, school supplies and the parking permit for her car. This time last year, we were cross referencing lists, buying last minute things for her dorm room and figuring out how to pack everything into our van for the 90-mile drive to her college campus.


I remember thinking to myself at the time, how in the world would I get used to not seeing her everyday? How would we all adjust? During Lauren's freshman year of college, I learned the following:
  1. It was completely fine if we didn't e-mail, talk, Facebook or text EVERY day. The world would continue to revolve.
  2. Skype is a wonderful thing - we even did three-way conversations with my stepson!
  3. It wasn't that big of a deal having Lauren save up all of her dirty laundry for me for two weeks at a time.
  4. I learned about muscles I didn't know existed when going up and down the four flights of steps to Lauren's dorm room.
  5. It's not necessary to always dispense advice, sometimes it's good to shut my yap once in a while.
  6. I am her mom, but also her friend.
As I wait for the move-in day to arrive, I can't help but feel excited for her. I only lasted one semester away at college because I was way too "homesick," and fell into the wrong "crowd." My husband and I have raised Lauren to be a mature and responsible young woman and to know right from wrong.   Good luck, my sweet girl, as you embark on your second year of college! We will miss you very much, but we are also immensely proud of you. 
 
 
 

Tuesday, July 28, 2015

A Beautiful "Butterfly"

This past Sunday, the disability ministry that I am blessed to be the program director for had a picnic that started about 11:30 a.m. We had a handful of firemen and a policewoman there who brought two big fire trucks and a police car to look at. We also had face painting, a petting zoo, lots of games and yummy food. About 2 p.m., a van pulled into the parking lot. The doors opened and five disabled residents from a group home got out. I went over to welcome them to our picnic and directed them to one of the tables. I then sat down between two of the women. The lady to the left of me immediately fell asleep in her wheelchair. The gal to the right of me who looked to be in her mid-70's was looking straight ahead with a big scowl on her face. She looked incredibly ticked off and mad, like the last place in the world she wanted to be was at a picnic talking to someone she had never met before (me).  I asked her a bunch of times if she wanted to color in one of the coloring books we had and she said no. I tried asking her questions and she didn't answer me.  I was beginning to think she was deaf and/or non-verbal. I was going to keep sitting there just to keep her company, even if she didn't utter a word.  One of the volunteers that had come to help at our picnic, was handing out free harmonicas and my new "friend," was holding one on her lap. After a bit of coaxing, she took the harmonica out of the box. Her hands were gnarled, but she was still able to hold it herself after I showed her where to place her hands. I then told her where to blow into it.  Lo and behold, she proceeded to play a handful of songs!!!  After she got done with her "mini concert," she started to talk to me!! She had the most beautiful voice and we chatted for a while. After me asking her multiple times if she wanted to get her face "painted," when one of our face painting volunteers came over and asked her, she said yes! She was wheeled over in her wheelchair to the face painting "area," and I chatted with some of the other disabled residents at the table. When my "buddy" came back, she didn't have her face painted, but rather on her knee was a butterfly!  She kept pointing to her knee and telling me, "butterfly." Around 4 p.m., the residents had to go back to their group home. My awesome face painting volunteer and I assisted the two caretakers in getting everyone loaded back into the van. I gave my new friend a hug and when she was settled into her seat, I looked over one last time at her. She was looking straight ahead, but now had a big smile on her face.  Good-bye, my sweet beautiful "butterfly," I'm sure our "paths" will cross again soon.

Sunday, July 19, 2015

To the Mom at the Music School

 
 
I know that you felt uncomfortable in the music school waiting room last Wednesday night. I saw you shifting in your seat, like you would rather have been anywhere else in the world, but where you were.  When I started talking to my friend in the wheelchair, I could see you staring at me. When the two young women with special needs starting chatting with each other, I watched you look at them and then turn away. I'm guessing you felt out of place when the three moms of the adult children with special needs started chatting happily amongst themselves at the table next to you. When I was waiting for Dominic's teacher to come and take him back for music therapy, I could tell by your expression that you were trying to guess what his "disability" was. When I saw your son coming down the hallway from his music lesson, I watched you bolt of your chair and rush your son out the door. When Dominic and I were walking to our car and you and your son were getting on your bikes to ride home, I tried to make eye contact with you, but you kept looking down. I really wish you would have looked up, so Dominic and I could have said hi to you.  I hope to see you again at the music school. I could tell you that we are not so different, you and I. We are the same. We both have sons that play music.
 
 
 
 
 


 

Sunday, July 12, 2015

A Sister and Brother Summer "Bucket" List

Back at the beginning of the summer, Lauren decided that she would start a "bucket" list of activities that she wanted to do alone with Dominic. Given that she has her own car and license, I am not required to be a "chauffeur." This was an idea that she thought up on her own - I had no hand in it whatsoever. She told me recently, "it's fun to do "sibling" things with Dominic!!" In all ways, they are "typical" siblings. So far, they have watched a movie in a movie theater:

 
visited the library, played tennis and went for Slurpee's at the 7-Eleven!


This summer has been a bit of an adjustment for both "kids," because Lauren has a summer job and she is working long and late hours. When Dominic hears her car pull up in the driveway, he will come to the front door as she comes in and say, "surprise, welcome home La-La!" It definitely puts a big smile on her face (and mine). Lauren told me recently that she and Dominic have three more items on their "bucket" list - going to Dick's Sporting Goods at the local mall, bowling and ice skating. There are only six more weeks left before Lauren leaves for her sophomore year of college. They better get moving!

Tuesday, July 7, 2015

Why My Daughter is My Heroine

What if you had the chief of pediatric rheumatology at a well renowned hospital in the Midwest, look you right in the eye after four visits and tell you that even though your child had the positive genetic marker and the family history for an autoimmune disorder called ankylosing spondylitis that wasn't what she had? What if you had been told your child was, "failing to thrive" at age 14 and you watched as her weight plummeted to under 90 pounds, feeling helpless and unable to help her? The child I am talking about is my daughter, Lauren.  When the chief of rheumatology looked at me that day and told me basically that nothing was wrong with my child, I knew that something had to change immediately. I needed to stand up and speak up. I was not going to give up, it's just not in my nature. I have advocated tirelessly for Dominic since he was diagnosed with Autism at age 2 1/2 and with Lauren it was no different. At Lauren's next doctor's appointment, I told the doctor that I was working closely with here locally, "we are done with the director of pediatric rheumatology, you need to send us somewhere else." We were sent to a pediatric rheumatologist located at another hospital over an hour way. At the first visit, he agreed with my "diagnosis" of ankylosing spondylitis and put Lauren on a self-injectable medication, that gave my daughter her quality of life back. She has been able to lead a normal teenage life and participated in eight seasons of cheerleading in high school as well as being inducted into the National Honor Society. Lauren missed many days of eighth and ninth grade because of doctor's appointments, but she never missed a day of school because of how her autoimmune disorder made her feel. When Lauren turned 18 last year, she could have said, "okay, I'm an adult now and I don't have to listen to my mom!" Thank goodness that was not the case. She and I work together as a "team" to keep track of her doctor's appointments and medication refills, even as she gets ready to start her sophomore year of college next month. Lauren and I have always been close, but guiding and assisting her through the challenges of being a teenager with a serious autoimmune disorder has brought our relationship to a different level. According to the Merriam Webster dictionary, a heroine is, "a woman admired or idealized for her courage, outstanding achievements, or noble qualities."


To me, that woman is my daughter, Lauren.

Monday, June 22, 2015

To the Mom in the Dairy Aisle


When you and your daughter came up to Dominic and I that Monday afternoon in the dairy aisle at Meijer and started talking to us, I know you had no idea what I had been through the previous 48 hours. The past Saturday, I had to call 911 because Dominic had a seizure and was unresponsive. I bet you didn't know that he went by ambulance to the hospital and that he had to be wheeled in on a stretcher and unfortunately this was not his first ride in an ambulance.  I bet you didn't know that I had to promise Dominic a meal from McDonald's if he lay still while the technicians did the CT scan of his brain. I wasn't able to tell you that day that he was discharged after a couple of hours because all of this tests were normal. I know that you didn't know that Sunday afternoon we had a fellowship service for the disability ministry that I am the program director for and when I got home, I found out that a beloved priest, who did our very first special needs mass had passed away. When I was reaching for the milk that Monday and heard a voice say, "there's Dominic," and saw you and your daughter walking towards us I had no idea who you were. We had just been to a follow-up appointment with our regular doctor who told me that Dominic would need to go to a pediatric neurologist over an hour away. When your daughter told me that Dominic was mainstreamed into her classroom for second hour all of the past school year, I thought that in itself was pretty darn cool. But, when you looked at me and said, "I would love to get our children together and be in Dominic's life however much you will let us," I was literally looking for your wings, because I assumed you were an angel. I didn't get a chance to tell you that day that Dominic had never been invited by a classmate to play, EVER. Your kindness that you showed towards me that day in the dairy aisle even though you had never met me, is something I will never forget, but will be eternally grateful for. Thank you so much from the bottom of my heart.

Thursday, June 11, 2015

Choosing to Talk About My Anxiety Disorder

Back when I was a child, my dad used to sing a song to me. He would sing, "oh, she worries, oh, how she worries." I would miss my first days of school, because I would "pre-worry" so much that it was debilitating. As I grew older, the "pre-worrying," followed me like a constant shadow. When I would host gatherings or other events for family and friends, the entire time beforehand I would constantly be worrying. Once the actual event or gathering would start, I would be fine. Once I got married and started having children, the "pre-worrying" continued.  About three years ago, I went and talked to a psychologist about everything that was going on in my life, because I was feeling a tad "overwhelmed." I distinctly remember looking right at the psychologist at one of my sessions and asking her, "so, do you think I have anxiety?" I expected her to tell me no. She was like, "oh, yeah, you do!" Wow, to finally have a "name," for all those feelings I had for so long was actually, well, life-changing. When I next went to my primary care doctor, she asked me if I wanted to be put on medication (Lexapro) for my anxiety. I was extremely hesitant. Well, let me just say this. I really, truly wish I would have been on the Lexapro since my teens. Up until now, just a few family members and close friends know that I have anxiety and take medication for it. I haven't really been keeping it a "secret," but rather felt that it was my private business. I have come to the conclusion that it is not something to be ashamed of and that's why I am choosing now to talk about my anxiety. It's a conversation that is long overdue. Demi Lovato, the singer, lives with bipolar disorder and has recently become the spokesperson for, Be Vocal: Speak Up for Mental Health, which is, "an initiative encouraging people across America to use their voice in support of mental health. Be Vocal aims to empower adults living with mental health conditions to speak up when talking with their professional support team and to speak up as a community to advance mental health in America." Wow, she is a mature young woman, isn't she? I have a ton of respect and admiration for someone that does that.  It seems like just about everyday, we hear of a young person taking their own life. Heartbreaking, isn't it?  Robin Williams, the actor, seemed to have it all. He evidently struggled for a long time with depression. How many of us knew that? I know I didn't. I guess he kept it "hidden" pretty well. Sad and tragic at the same time, huh? When someone has depression, unfortunately you can't just tell them to be, "happy," it doesn't quite work that way. Sometimes you need medication and/or therapy. I can only speak from my own personal experience, but I take my medication faithfully, everyday for my anxiety and am glad that I do. My "pre-worrying" has almost come to a complete halt.  How about this for an idea?  Let's stop sweeping mental health issues under the "carpet" and start the conversation!!!! 

Tuesday, June 2, 2015

I Want To Talk to Grandpa Mike

Last Christmas, my family and I drove back to Maryland for the holidays. Since my mom had just entered a skilled nursing facility a few weeks before, we stayed with my dad because I didn't want him to be alone.  Lauren and my dad share a love of  history, so they always have something to chat about. My dad and my stepson have known each other for more than 24 years, so they can always talk "guy" stuff.  It's been a bit more challenging though for Dominic to have a close relationship with my dad. One of the times when my dad visited us here in Michigan, Dominic did something my dad didn't like and he tried to discipline Dominic. I let my dad know right away that it was up to my husband or I to take care of that. My dad later apologized to me. On another occasion while at my parents house, Dominic starting playing around with the cuckoo clock that is in their living room. No matter how many times I told Dominic to stay away from it, he wouldn't listen. My dad would follow Dominic around to make sure he didn't touch it. It got to be kind of uncomfortable. I wish it was as easy as handing my father a "manual" on how to have a relationship with a grandchild with Autism. Since Dominic was just a baby when his other grandfather passed away, I really want my dad and Dominic to "learn" from each other, even though there is 70 years between them.  During the summer of last year, when we visited, my dad raised his voice very loud when Dominic was around. Every time since then, when he has seen my dad, he will go over to my dad and say, "hi, Pop-Pop," but then cover his ears and hum at him. Dominic is extremely sensitive to loud noises and I think every time he saw my dad he thought my dad would raise his voice again.  I think my dad was beginning to get annoyed with Dominic, until I explained to him the reason why he would cover his ears. Since the beginning of the year, I started calling both my mom and my dad every evening to keep up with what is going on with the both of them.  It's been a difficult adjustment for both of my parents, given that they have been married for almost 53 years. I call my dad shortly after dinner, about 8 p.m., every night and I go into the living room where it is quieter. I know my dad looks forward to my calls and we always "compare" notes on what is going on with my mom, since I am not always able to get a ahold of her.  A few weeks ago, when Dominic heard me talking to my dad, he came over out of the blue and said, "I want to talk to Grandpa Mike!" Pretty darn cool. He now talks to "Grandpa Mike" pretty much every evening. They both have so much that they can "teach" each other and I can't wait to see how their relationship grows and develops!!

Saturday, May 30, 2015

An Oldie, But a Goodie

I have written more than once about how I like to go through the old recipes and newspaper/magazine clippings that belonged to my mother-in-law. I have definitely found some good ones, that's for sure! I recently searched through the big pile of newspaper clippings and pulled one out from 1955. All four recipes had coconut involved, but only one had the quantity that they made. There were recipes for coconut macaroons, cornflake macaroons, baked tropical confections and marguerites. The only recipe I had all the ingredients for were the coconut macaroons, but I had no idea how many cookies it would make. One thing I quickly discovered about macaroons, they are super duper STICKY.  Also, make sure you use plenty of non-stick spray on the cookie sheet! I used an older cookie sheet and not enough non-stick spray, so they stuck a bit when I was removing them to a wire rack to cool. They still tasted great, though. Aren't the little scraps always the best?!?!?!?!?



Ingredients

1/2 cup sweetened condensed milk
1/8 teaspoon salt
2 cups shredded coconut, sweetened
1/2 teaspoon vanilla extract

Preheat oven to 350 degrees and spray a cookie sheet with non-stick spray. Set aside. In large bowl, put the condensed milk, salt, coconut and vanilla extract. Mix well with large spoon. Drop by rounded tablespoons onto the prepared cookie sheet. You should be able to get a dozen - these cookies don't spread very much.  Bake for 15 minutes or until the macaroons begin to turn golden brown. Remove from oven and let them sit on the cookie sheet about 5 minutes. Gently remove to wire rack to continue cooling. Keep in covered container at room temperature.


I loved "finding" this recipe - it was an oldie, but a goodie!!!

Sunday, May 17, 2015

I Can See It From Both "Sides"

By now, you have probably heard the story about the girl with Autism whose entire family was "kicked off" a United Airlines flight. When I saw this story on the news, my first thought was anger. Anytime I think that a special needs child/adult has been mistreated, I automatically go into that mode. Well, the more I read about what happened, I could totally see it from both "sides."  I wrote recently about when we made our reservations to fly to Jamaica for spring break, American Airlines had us separated from Dominic. At first, the customer service representative told me they couldn't help me, but I persisted and a supervisor made the change. While some airlines are excellent with special needs, others are not. The mother could have definitely had a better choice of words when talking to the flight attendant about getting her daughter a hot meal. Her words were something to this effect,

"I have a child with special needs, I need to get her something.' The flight attendant said, "I can't do that,'" the mom then explained, "How about we wait for her to have a meltdown, she'll be crying and trying to scratch in frustration. I don't want her to get to that point."

I can certainly understand the mom having such utter frustration that she felt she had to use the word "scratch" to get the attention of the flight attendant, but when she did, it was perceived as a "threat." The pilot of the plane has a responsibility to all of the passengers. If the girl with Autism did hurt a fellow passenger which according to the mom was a possibility, then the pilot had to make a judgment call. The flight attendant who initially refused to help the mom out by getting her daughter a hot meal sounds like he may need to get some "training" on how to assist those with special needs. Anyways, what it sounds like to me is what was a small problem, escalated quickly into a big problem. What I found fascinating is the number of people who felt the need to comment on social media. There were comments like, "that's why we don't fly with our child/adult with special needs," and "I won't ever fly on United." There were others targeting the mom such as, "the mom was unprepared and she should have planned accordingly." Well, she tried to get her daughter to eat before the flight and she wouldn't. The comments that I thought were the worst were the ones from people who didn't have special needs children/adults saying stuff like, "why would you take your special needs child/adult on a plane in the first place?" Hmm, okay. Dominic has flown four times now and we have learned from experience that he is very scheduled and needs to know everything in advance.  On our trip to Jamaica recently, we brought a spiral notebook and a pen/pencil and I wrote down every single thing we were planning to do on our trip. Dominic held on tight to that notebook for both the flights to Jamaica and back. I'm not saying it would work for every child/adult with Autism, but it has with us. I also kept multiple snacks and electronic devices in his backpack, so I was just about as prepared as I could be. But, as those of us with children, special needs or not know, there is always the possibility of being caught off-guard, right?  Did the pilot make a mistake by having the plane make an "emergency landing?" Possibly.  Could the mom have said something different to the flight attendant when asking for a hot meal for her daughter? Maybe. Here's what I hope comes of this whole story. That United Airlines and those other airlines that don't have a program in place for those with special needs learn from those airlines that do. I also hope that other families like ours are willing to try and fly. We are proof that it can be done. One last parting thought. For those who don't travel with special needs individuals, let's try to not be so quick to "judge" those who do. 

Friday, May 8, 2015

The Sky is The Limit for this Boy!

I'm guilty. I admit it. I am reminded by both Lauren and the hubby, more often than not, that Dominic is capable of much more than I give him credit for.  I really don't know why I sometimes underestimate what he can do. Maybe it's because I don't like to see him fail? or get frustrated? I know to learn, he will get upset and cry and possibly scream. I guess it's the maternal instinct in me, I don't like to see my children or anyone else's children sad. Having to tell Lauren that Santa Claus wasn't real was a pretty tough thing. At one time, I was convinced Dominic would never get toilet trained. It truly was easier to just change his diaper or Pull-Up. We knew there was no physical reason why he didn't want to get potty trained, which made it all the more frustrating. More than once I was ready to give up, but his old teacher, Mr. P., planned out the whole process and it did eventually happen. Just in the past three weeks, he has ASKED to use the bathroom both at home and at school. Major development and milestone :) A few years ago, I tried and failed at teaching Dominic how to tie his shoes. Thank goodness for his amazing teacher and his paraprofessionals in his classroom. He learned from them how to tie his shoes!


When Lauren came home from college a few weeks ago, one of the first things she did was tell me to take off the training wheels on his bike. She spent one afternoon, helping him get his balance.



I tend to over talk with Dominic and catch myself wanting to "prompt" him still too much. The other day, he told me that I was, "busting his chops." Hmm, well most likely I was. Dominic's speech and language continues to be behind that of his peers, but he has made remarkable progress since he started fifth grade. Since last summer, we started taking Dominic to a private speech therapist once a week with the hope of one day integrating him into one of her "social groups." It's pretty intensive therapy and she makes him work really hard for those 30 minutes. She gives Dominic "homework" for the week and I try my very hardest to always make sure it's done!! Recently, his speech therapist was giving Dominic a lot of praise for how well he had done during the therapy session. She then turned, looked at me and said, "the sky is the limit for this boy!" Wow, as a mom of a special needs child, to hear those words, was pretty awesome.  Never again will I doubt what Dominic is capable of!! 

Wednesday, May 6, 2015

You Are Beautiful, Mom

My mom and I have always been close. Besides being mother and daughter, we are also friends. When my family and I moved to Michigan in December of 2001, I knew that my mom would have a difficult time adjusting to the fact that I was going to be living 600 miles away. While we absolutely love the Midwest and everything it has to offer, when a friend or family member is in need back on the East Coast, it really makes me wish I could be in two places at the same time. My mother was diagnosed with heart problems at the beginning of August of 2014, which unfortunately are so far advanced, there is nothing the doctors can do to help her.  This past December,  my mom was moved to a skilled nursing facility. It has been an adjustment for all of us, but I think she has finally reached a point where she considers where she lives "home." Her heart is so weak that she is confined 24 hours to her bed. I have always considered my mom to be an attractive woman and that her smile is one of her best features.


When the kids, the hubby and I visited around Christmas, I knew I wanted Lauren to take a picture of my mom and I. She was trying to tell me that she didn't think she looked her best, but I told her, "You are beautiful, mom!" Lauren captured the essence of my mother, don't you think?
 
 
I don't talk about it much, but it's been very, very, hard to be apart from both of my parents at a time like this, but particularly my mom, because when I hang up the phone after my evening conversations with her, I truly don't know if that will be the last time I talk to her. The way I have reconciled it in my head, is that I will enjoy every single moment that I have the chance to talk to her. As much as I like to be in control of everything in my life, this is definitely a situation where I am not in control!! Anyways, since I can't be with my mom on Mother's Day, when I saw this card, I knew I had to send it to her!
 
 
 
It isn't the same as being there, but hopefully it comes close!

Friday, May 1, 2015

Yes, I Know I'm a "Dinosaur"

This past school year, I helped co-teach a first grade religious education class. During our final class, a few weeks ago, I had to take an important cell phone call from the hubby. When I came back to the table and sat down to continue the lesson, one of the little boys looked at my phone and then at me and said, "you have a really old fashioned phone!" Yes, I STILL have a TracFone "flip phone." I communicate mostly by e-mail and Facebook, so I really haven't felt the need to switch to another kind of phone. Lauren taught me how to text a few years back, so when someone texts me, I can at least text them back!  A favorite saying of mine is, "good grief." The other day I caught myself saying, "heavens to murgatroyd." Yikes. I love to look through my old cookbooks and find "vintage" recipes.  Since becoming the program director of a disability ministry, I have met a handful of different priests and even a retired bishop!  Yesterday, I met with an 84-year-old retired priest who will be doing our Mass on Sunday. He is a busy man and his cell phone kept ringing. He was telling me how he just learned how to take pictures and put them on his smartphone!  I showed him my TracFone and he said, "I don't think I've ever seen a phone like yours." I looked at him and said, "yes, I know I'm a dinosaur!" LOL. I've been thinking lately, that maybe I need to have a new hairstyle, given that most of my life I have worn "bangs."


 
 
I don't know though, if it's a style that has worked for me for so long, why change it?!?!?!

Thursday, April 16, 2015

I Knew in That Instant

In the Fall of 2014, I applied to take a training session to work at the libraries in our school district. I didn't make the "list" and while I felt a bit disappointed, I knew deep down in my heart that opportunity was not the one for me. My life was already very full of helping transition and guide Lauren through her first year of college, helping to manage my mother's care in a nursing home, co-teach a first grade religious education class, guiding my father through all the challenges of living alone and getting Dominic adjusted to middle school. At the back of my mind though, I had this feeling that I wanted to be doing more, but I just didn't know what that "more" was. I don't think I would qualify the way I felt to be a mid-life "crisis," but I definitely knew I had reached a "crossroads" in my life. I thought about looking for a job or going back to college. Neither of those two ideas seemed like the right "fit."  I began to wonder if I even had the time to add anything more to my already full "plate." Sometimes, when you least expect it, a life-changing decision is made for you.  Since last May, when Dominic made his First Holy Communion, I have been praying and hoping that maybe one day in the future there would be a Mass available for special needs children and adults. I wanted to create an environment where no one felt "different" and EVERYONE was welcome. Since I joined a disability ministry earlier this year as the program director, I had been working on making sure that would happen. 


This past Sunday afternoon, we held our first Mass, the "inaugural" event for the ministry.  I knew it wouldn't be perfect, but I also wanted to set the right tone and standard. One of the moms coming with her two special needs sons had requested that they be part of the Mass. She and I had communicated by e-mail several times before last Sunday, we were just about as prepared as we could be. I was filled with a nervous apprehension about how everything would go. Around noon, people started showing up. We had two gentlemen in wheelchairs and a bus full of adult men with developmental disabilities. With each new person that came through the door, my excitement built. When I walked in behind the priest and looked around the chapel full of people, I really had to stifle my tears. To have wanted something for 11 months and finally see it happen, was an incredible feeling. There simply were no words to describe it. After the Mass, we all went down to the dining room and had lunch. Every person in the room had a smile on their face and were talking to their neighbors at their table. When the group of young men were getting ready to leave to go back to the residential facility where they live, one of them came over to me, told me bye and then hugged me. I knew in that instant, if there was ever any doubt whatsoever in whether I have made the right "decision" to be part of the disability ministry, there was absolutely NO doubt. I have never been so sure of anything in my life! To add "icing to the cake," Monday morning, I received an e-mail from the mom who had her sons participate in the Mass. This particular sentence has stuck with me this whole week, "I can't tell you how great it was as a parent watching my kids fulfill their desire to participate in the Mass, I saw them shine." Anybody got a tissue?!?!!?

Wednesday, April 8, 2015

Spreading "Awareness"

When you have a child with Autism, it can sometimes feel like you are always "searching" for just the right "piece" that will make everything come together and "fit" for your child. I read somewhere recently that there are over 500 treatments available for Autism. Wow, hard to know which one to try, huh? What makes things even more difficult is what works for one child may not work for another. There are all kinds of unscrupulous people out there that will claim they can "cure" your child of Autism. Hmm, okay.  I have always been of the mind of trying to "modify" the behaviors that Dominic exhibits as common traits of Autism, like the poor eye contact, "scripting" speech and improved interaction with peers and adults.  We still struggle with asking him "why" he feels a certain way. That has been and continues to be a constant struggle for him. I wish that was a "piece" that fit better in the "puzzle." Okay, I'm switching gears a bit here. The other day I saw a website that was actually selling shirts that said, "I'm Autistic, Not Stupid" and "I Have Autism, What's Your Excuse?" Yikes. I believe there are better ways of "educating" those around us about Autism, don't you think? Being that this is Autism Awareness Month, yesterday afternoon, I had an incredible opportunity to be interviewed  about what its like to be a parent to Dominic.  First and foremost, I wanted to let the wonderful gal that interviewed me know that he is just like any other 10-year old boy, except he just so happens to have Autism.  I wish when people met a child or adult with special needs that they could look past the disability and get to know the person first. Wouldn't that be cool? I think about the amazing and awesome people that I would have never met in a million years if Dominic didn't have special needs. I like to think that each "piece" of  his "puzzle" represents a person that has helped our family. Let's just say, we have a HUGE puzzle! As I have said before, when you are parenting a child or adult with special needs, it affects the ENTIRE family. I felt so blessed that I was able to be interviewed and share my opinions yesterday. If I can help just one person out there feel less alone, then I will be a happy lady. Okay, back to those two shirts I was talking about earlier. I don't know about you, but I think this is a much better way of spreading "awareness" about two things I am very passionate about - Autism and the disability ministry that I am ecstatic to be a part of!!



Tuesday, March 31, 2015

Why Having Friendships Are So Important

When I moved to this area over 13 years ago, I knew absolutely nobody. I remember going to PTO meetings at Lauren's school and literally saying, "hi, I just moved here!" Think back to high school - wasn't it REALLY important to have friends? Well, in my opinion, as we get older, I think having friends are even MORE important.  So, what does it take to make and keep friends? Honesty and loyalty are my two top criteria. I want a friend that always has my "back." They are always looking out for your best interests, will tell you if you have spinach in your two front teeth and will never hesitate to think you are an amazing baker!!


My husband's name for me is "Honest Abe," yes, like Abraham Lincoln. I can not tell a lie, that's why I don't play poker!  A good friend will always be loyal to you 100% of the time, not just sometimes or when it suits them, but ALL the time. To keep friends, we need to offer support and keep an interest in what the person has going on. If we always talked about ourselves, wouldn't that be a bit of a one-sided friendship?!?!? One thing that I recently discovered. Even if you haven't talked to a friend in a while (like several years), many times you are able to pick right up where you left off. It has been so cool to "reconnect" from my friends from my childhood. We now talk about getting older, our kids and our aging parents.  How about when a friendship "breaks up?" That happened to me a few years back and it was truly devastating. It took me months to get over it.  I finally moved on, but I no longer have a friendship at all with this particular person. It's probably better that way! When you find a good friend, consider yourself truly blessed.  I love meeting new people and am continually forming new friendships!  Can one ever have enough friends? In my opinion, no!

Friday, March 27, 2015

This Is Why I Will Never Stop Advocating

This morning, I saw a video that an Autism mom had posted on Facebook. After I watched it, I had two emotions - sad and mad. This particular mom had listened to a famous comedian on the radio who decided that it would be hilarious to make a special needs person part of his jokes. It's taken me a few hours to settle down enough to write this post. First of all, it is NEVER acceptable to make fun of special needs children or adults. Those children and adults have families and when you crack jokes, it hurts those families.  I felt physically sick this morning after hearing what this comedian had said. Second, there are many, many non-verbal children and adults out there. Back when Dominic had less language, he would sometimes say, "oh, oh," because he was trying to talk. I had someone ask me once in a sarcastic and negative tone of voice, "what does oh, oh, mean?!?!?!?!" After about 15 seconds of composing myself, I calmly looked this gentleman square in the eyes and said, "he has some speech delays." Third, this comedian's jokes were taking place in a church.  For those of us who take our special needs children and adults to a place of worship, we should be welcomed with open arms, not with disdain. I recently became the project director of a special needs ministry where I live. It will be one of my primary "jobs" to change the way we "see" others with disabilities. I want to become a "voice" for the "voiceless." I know that I am lucky, because our church has always embraced us, but there are many other families with special needs children and adults that have not been as fortunate. I plan to advocate not just for our family, but for ALL families out there, regardless of their religion. Fourth, there are still misconceptions of those with disabilities that need to be changed. I had someone who I am extremely close to, just this week ask me, "can Autistic children learn how to read?"  Dominic is in the fifth grade, but probably reads on about the third grade level. He has gone from throwing a book across the room, to asking me every night to read him a story. When I found out my local library didn't have a "storytime" for children with sensory issues or special needs, I wrote several e-mails to the person in charge of the programs, over the course of a few years, just to keep the idea out there. I am happy to say that there is now a "Sensory Storytime" program being offered. It has definitely been a "struggle" to "educate" this particular person on what children with Autism can do.


 Dominic can put together puzzles with over 500 pieces.


He can tie his shoes.

 
Lastly, it so incredibly disrespectful that some comedians feel its perfectly "acceptable" to make those with disabilities the "punch lines" of their jokes. Up until this morning, I was a fan of this particular comedian. Not anymore.