Thursday, January 28, 2016

A Friendship Forged By Elevator Rides


When our family moved to Michigan over 14 years ago, one of the very first things we did was join a church. We are blessed to be part of such a great faith community. About a year and a half ago, a gal that I knew, but not really, really well, (Mrs. F) approached us after Mass. She was telling our family how her older daughter had worked over the summer with special needs children. A few days later, she sent me this message:


"Cathy, I don't think I was very eloquent because I hadn't thought out exactly what I wanted to say. But I was thinking about you all summer. I guess what i wanted to tell you was how much I admire you and your husband. Dom is your son and I know you would do anything for him, just as you do for Lauren and your stepson. But still, you are so incredibly patient and loving...and just amazing. You are lucky to have Dom in your life...but Dom is also a very blessed little boy. That is really what I wanted to say."

Wow, I thought she was very eloquent! Such kind and supportive words. For about the past two years, we have used an elevator ride as a "reward" for Dominic behaving well in church. There have been a handful of times where he didn't get a ride because he acted up and he was NOT happy. Looking forward to an elevator ride after church has been a HUGE incentive for him. My husband, Lauren or I used to accompany Dominic, until one day I asked Mrs. F if she would like to ride with him. Now, she is his number one choice for those elevator rides.  She told me recently,

"I'm honored to be someone that Dominic is comfortable with and wants to share his special treat with. He is an awesome young man. I enjoy those elevator rides, too!!"



The definition of a friendship according to the Merriam-Webster dictionary is, "a friendly feeling or attitude - kindness or help given to someone." It has been really cool to watch Mrs. F and Dominic become "buddies." I appreciate the time she has taken to not just to get to know Dominic, but our entire family. We both have kids in college and what a great support she has been to me. Thank you Mrs. F from the bottom of my heart.

Saturday, January 23, 2016

Celebrate

Dominic getting diagnosed with Epilepsy last year by a pediatric neurologist was not anything I could have ever predicted. After hearing from more than person that Autism and seizures going together is not an unusual thing came as a HUGE shock to me. Dominic having the fourth seizure AFTER having the anti-seizure medication increased after the third seizure was very discouraging. When I saw my doctor for a physical in December and I told her that for the past few months prior to the appointment I had felt exhausted all the time even with several hours of sleep a night, she gave me a prescription for an anti-depressant. I was thinking to myself, good grief, I'm not depressed?!?!  I'm just tired!!!  But, I have to say, it's only been a month, and I definitely feel much more "balanced." The constant stress and worrying about whether Dominic was going to have another seizure had really begun to take a toll on me, both mentally and physically. Each of the four seizures have been very different in both the intensity and duration. The neurologist suggested upping the medication again after the fourth seizure and so far, so good! Being a caregiver for special needs children and adults is exhausting and constant. You have a whole different layer of worries. But, you also celebrate every accomplishment no matter how big or small. I feel like breaking out the New Year's Eve horns and marching around my house every day Dominic doesn't have a seizure.


I was having full blown conversations with Lauren when she was 18 months old. I was ecstatic this past Thursday because Dominic told me, "Can I ride the school bus?" Those full, spontaneous and complete sentences are not that easy to come by. Lately at home, Dominic has been "scripting" from old Barney videos. Darn that purple dinosaur!! Potty training Lauren was very easy for the most part. For Dominic, it took seven years. Getting his eye contact for more than 10 seconds is cause for a party! Back in December, we had a gal with Down Syndrome making her First Holy Communion at our Special Needs Mass for the disability ministry. When I was chatting with her mom, I was so excited for her daughter, I could barely contain myself. I told her, "it's almost like it's my daughter making her First Holy Communion!" Yes, that most certainly was a time for celebrating!!

Thursday, January 14, 2016

Why I Gave $3.00 to the Man on the Corner

When I first got out of high school, I worked for a handful of years in downtown Washington, DC. I used to see quite a few men and women living on the streets. One morning, coming off the subway and riding the escalator to the street level, I remember very vividly a homeless gentleman saying to me, "do you have a cigarette?" I didn't say anything and kept walking. He started following me down the street shouting, "didn't you HEAR me? I asked you for a cigarette!" I turned around, looked at him and said, "I don't smoke." His personality suddenly changed and he apologized for yelling at me. Since moving here to the Midwest, I rarely see someone holding a sign saying they need money, food or a job. Shortly before Christmas, the hubby was asking me what I wanted for a gift. I told him I already have everything I need. Yesterday, when I was on my way to a meeting for the disability ministry, while waiting at a red light, I saw a gentleman probably about my age, holding up a sign that said, "hungry." I only had $3.00 on me. I thought to myself, I could ignore him, but it was so incredibly frigid yesterday that I rolled down my window and handed the money to him. You would have thought I was giving him a million dollars. He was so grateful. I hope later on in his day, he went down the street and got out of the cold and bought himself a cup of coffee. Who am I to judge whether he was honest or not? My feeling was that if he was standing on a street corner when it was so cold, he wasn't doing it out of choice, but out of  necessity. Maybe he had a small child that needed formula or some diapers. Hard to know. These are the people on the "fringes of society." As I sit in my house this morning writing this post, hearing my heat just click on, I'm extremely grateful and thankful for having food on the table and a roof over my head.

Tuesday, January 5, 2016

It Starts the "Conversation"

A t-shirt to me is like a walking "billboard."  It spreads a "message." When Dominic's teacher was ordering "Autism Awareness," shirts a while back, some of my family and friends ordered one.

 

I especially like the message on the front - "Autism Awareness - Accept - Understand - Love." This morning, I did a quick Internet search of "Funny Autism T-Shirts." While most of them were acceptable, I came across a few I would not consider acceptable, such as, "I Have Autism, What's Your Excuse?" and "Hey, Keep Staring at Me and You Just Might Cure My Autism, Then We Can Work on YOUR Social Skills." Oh, my. Never in a million years would I wear a shirt with those kinds of messages - it immediately puts the other person on the defensive!! When my brother wore his shirt around where he lives, he had someone come up to him and they started talking about Autism, it "started the conversation." Pretty darn cool, don't you think?



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."