Friday, August 11, 2017

What Does the Future Hold?




This past Wednesday, Dominic and I went to the Kroger to do some grocery shopping. He has become very helpful and I continue to use our Kroger outings as educational "field trips." He uses different skills such as problem solving, following directions and one of the most important ones, PATIENCE !! The past couple of times we have gone to Kroger, after we load up the van with our groceries, I have let Dominic take the empty cart back to the cart "corral." He usually walks right back to the van without incident. Not this time. He decided to run into the parking lot. I immediately yelled, "Dominic, get back here! You know better than that!" I was angry, but remained calm after he got in the car and we headed back home. I told him at least three times to never do that again . Hopefully, he "received," my message loud and clear. Will there ever come a day when I don't have to keep my Autism "radar," up??  As he has gotten older, I have been trying to give him more independence, like getting the newspaper and the mail from the boxes at the end of our driveway. It may seem like a small thing, but when he was younger, he would run into the street, not caring if cars were coming. When Dominic was really little, like two or so, he picked up a steak knife from the kitchen counter while I had my back turned for a few seconds and put the entire blade down his throat. He has gone from that to setting the table for us each night. I have worked with him to remember steak knives always have the blades down. Only in the past year, have I let him set the table when steak knives are involved, for good reason! I had someone tell me a while back that I should start looking for a group home/facility for Dominic. He was like 10 or 11 at the time! He turned 13 about three weeks ago and I have been thinking more and more about his future. I have an extra layer of overprotectiveness because Dominic has Epilepsy and he just had a seizure six days ago. It had been almost 8 months. Sigh.  Earlier this year, I had surgery to remove cancer from my leg. Waiting five days to find out if my cancer had spread was incredibly difficult. Thank goodness it hadn't!! I thought A LOT during those five days about Dominic and how he would handle it if I was not going to going to be around. My husband will be 65 in November and I turned 54 about a month ago. We are not young parents. Couples our age have grandchildren Dominic's age!! I know grandparents raising their special needs grandchildren . We may never have an "empty nest," and I am okay with that. Dominic turning 13 seemed to come quick!! In five years, he will be 18 and an adult. He is fascinated with puzzles and putting things together. 

  
Will he be an electrical engineer like my brother? If I think too much about the future then I  miss out on the present. I take each day as it comes and continue to give Dominic more and more chances to become independent. Shouldn't that be my goal?

Friday, August 4, 2017

How Kathy Bates Helped Me Come to Terms With My Lymphedema

I have always admired Kathy Bates for her amazing acting ability, but when I heard her speak out about her experiences with lymphedema recently, it made me admire her even more!!! I found a video from when she was on the show, "The Doctors," where she shared her story about living daily with lymphedema. As I listened to her, I realized many of her experiences were similar to mine and it made me feel a lot less alone.  I noticed swelling in my calf and particularly in my foot shortly after my operation for my Stage 1B Malignant Melanoma in March of this year. As the weeks went by and I continued to recover and slowly return to "normal," I remember thinking to myself, "why is my thigh, knee, calf and foot so swollen?" "The surgical oncologist only removed two lymph nodes from my groin." I decided to make an appointment at the beginning of May at the Melanoma Clinic and discuss the swelling with them in person . The gal I saw there told me I had lymphedema and to order a "compression garment," which I did. I received no guidance on how to use it, when to wear it, etc. The handful of times I did attempt to wear it, the circulation in my ankle was getting cut off and my ankle had a bright red ring around it!! Towards the end of May, I called the Melanoma Clinic again and made another appointment. At that appointment, I was referred to a lymphedema "clinic." There, I was evaluated and started a four week physical therapy program. My left leg was by then, 38 percent larger than my right. I was starting to lose the range of motion in my foot. My treatment was pretty aggressive.  It involved wearing nine total compression bandages for up to 18 hours a day!! 


I also have fibrosis in my foot, which is scar tissue. I finished therapy yesterday and will need to continue wearing my bandages until my custom made compression garment is made and sent to me, which is going to be 2-3 weeks. Before my physical therapy ended, I asked my therapist if my lymphedema is permanent and a life long condition. She told me that it was. I applaud Kathy Bates for using her celebrity status to bring awareness to a little known condition that 10 million people in the United States struggle with. I may not be a celebrity or live in Hollywood, but when I get comments when I am out in public with all my compression bandages on, I use it as an opportunity to educate others about lymphedema!!

Tuesday, July 11, 2017

Taking a Step into Dominic's "World"

How would you like to spend a moment in the wonderful world of "stimming??" Below is an example from this past Monday afternoon. Dominic is reciting part of a DVD that my sister gave him at least eight years ago that he has watched many, many, many times.




According to the Interactive Autism Network, A Partnership of the Kennedy Krieger Institute and the
Simons Foundation:
 
"many individuals on the autism spectrum exhibit some form of repetitive motor behavior.  Just as they may speak a word or phrase over and over again (echolalia), or even just utter the same sound repeatedly, they may flap their hands, flick their fingers, bang their heads, grind their teeth, or endlessly perform other seemingly random physical acts. The psychiatric term for this is stereotypy, but these actions are more often referred to as “repetitive behaviors” or “stimming” – which is short for self-stimulation."

We learned a long time ago that when Dominic is over stimulated, he will retreat into his "world" of repeating parts of videos and television shows/commercials (referred to as "scripting") as a coping mechanism. When we were in Maryland last week on vacation, we stayed with our close friends who have always owned a cat.



This is how Dominic prefers to observe cats, when there is glass separating him. To Dominic and the cats credit, the two of them managed to co-exist relatively harmoniously. When we went to another friends apartment and he noticed a cat hanging out in her bed in the living room, he screamed, started walking in circles and then began non-stop scripting. I think because he hadn't noticed the cat when we first got there.  Dominic went back to summer school yesterday after a week off.  Monday, I heard him repeating an old Barney Christmas video. Yesterday afternoon it was a commercial, "just two pills, all day strong, all day long." As the week goes on, the stimming will decrease as he gets back to his routine, but never really goes away completely. Over the years, we have developed a few phrases to get him to stop when we feel he has visited the stimming world for a little too long. Last night, Dominic was reciting part of Thomas the Train. Well, it had been awhile since he had been there!

Monday, June 12, 2017

Thank You for Paving the Way


One of the most important things I have learned the longer I "travel," down this Autism "road," is that you need the support of a mom that has racked up a few more "miles," than you!! I met my friend, Mary, and in turn, her adult son, when I became a Board member of the Mid-Michigan Autism Association almost two years ago.  It took us just a short amount of time before we really bonded. Her son is more than twice Dominic's age, but their personalities are very similar. Dominic is absolutely terrified of taking a shower, but Mary told me a while back about using a brush on his back to mimic the way the water will feel, so I know this will be the summer Dominic learns to take a shower!! Thank you Mary. When Dominic had his first seizure and I found out her son had experienced them too, I felt even more bonded with her, she knows exactly how that feels. Thank you Mary. This past weekend, I asked when she let her son go into a men's restroom by himself, mainly because I had a very negative experience recently taking Dominic into the women's restroom. Mary told me she first let her son go by himself at 10 years old, but stood right by the door. Well, this weekend, when I knew the men's restroom was empty, I let Dominic venture in by himself, but I stood right by the door! Thank you Mary. Back in April, we "manned," an information table at a local 5K Race together.


Thank you, Mary.  Her son has "aged," out of the school system and ever since we met, she has voiced her concern about what would happen after that. When she told me that he was offered a part-time job, I was ecstatic!!!!! Hearing that awesome news, gives me hope that Dominic will be able to get a job when he too "ages," out of the school system. Thank you Mary for paving the way for me on this Autism "road.".

Thursday, April 13, 2017

It Wasn't My "Time"


Now that it has been a little over a month since my cancer surgery, I have had time to reflect on the entire experience. From the time I found out I had skin cancer in January until right now, I haven't cried. I think that was because I was trying to convince everyone else that I was going to be fine!! One of the very hardest things I have ever had to do was to continue to tell Dominic I would be okay, even though I really didn't know.
 

It was difficult for Lauren, because she was at college and couldn't come home. My husband was so strong through all of this. He never for a moment was negative. He kept everything positive the entire time. I relied on my faith enormously. I told three priests about my cancer and one of them anointed me with oil. The feeling of calmness after he did that was incredibly powerful. When things are out of your control, sometimes the only thing you can do is pray. The amount of support I received from my family and friends was tremendous! I had so many people reach out to me, both publicly and privately that I realized I am very blessed to have such a huge support system. I told a lot of people about my diagnosis, not because I wanted to be the center of attention, but rather if just one person gets a full body exam to look for suspicious moles, then everything I went through was worth it. Malignant Melanoma is a very serious and deadly cancer. I have had people tell me I am "lucky." I have to 100% agree with that. I am lucky that the cancer was caught early. I am lucky that it hadn't spread. I was extremely lucky I only had to drive one hour to receive treatment. I had reconciled in my own head that if I was going to die, I was ready to go. Thank goodness it wasn't my "time." About a year and half ago, my dad had a massive stroke. He and I have had lots of discussions about what he went through and what I just went through and how it was similar. He came up with one word that describes what are lives are now. That word is "gift." We have been given the "gift," of extra time. That is something no one should ever take for granted.

Tuesday, March 14, 2017

"Sliding" into Independence

We returned this past Sunday night from a one week vacation to our favorite resort in Jamaica. This particular resort has several pools and we like to hang out by the pool specifically designed for kids. One of the most popular things to do is to go down the giant water slides.


Okay, a little background on the water slides. Two years ago, when we were at this resort, Dominic and I almost drowned at the foot of the slides. We had went over to be able to greet Lauren as she came down, not realizing how deep it was. The lifeguard had to jump in and pull us to the surface. SCARY. That incident was the number one reason I enrolled Dominic in swimming lessons shortly after we returned home.  Anyways, last Friday, (the day before we left), Dominic and I headed over to watch Lauren come down. She had asked several times throughout the week if Dominic could go down the slides. Each time I said no.  I hadn't thought of asking Dominic until we watched Lauren. To my surprise, he said yes! Okay, now I had a decision to make. Do I let my fear hold him back or do I let him try?  Lauren promised me she would be with him the whole time. The lifeguard was also sitting within a foot of the bottom of the slides, so there was not a chance he would drown.  I let him go.  He came down the slide with no problems at all! When they came over to see me, Lauren asked him if he wanted to go again. He said YES! They went down a few more times.





Even now, with Dominic turning 13 in about four months, I am still guilty of underestimating his abilities. My husband and Lauren have to remind me! I don't know why I still assume he can't do something. Trying is a part of learning, right? I think it's my inner "mamma bear " instincts of wanting to protect my "cubs." I was the "playground police," when Lauren was little to make sure she always got her turn on the swings, etc. Good grief. Looking back, I was pretty overprotective!!!  Lauren will be 21 in a few months. As I have watched her grow into an independent and self-confident woman, our relationship has evolved and changed. Ever so often, I catch myself going into that overprotective "mode" with her.  Does that feeling of wanting to protect our children ever go away? I am 53 and my dad is still over protective of me, so I guess I just answered my own question!! As Dominic continues to mature and become more independent, I need to loosen those restrictions I don't mean to place on him. I have already taught him what to say to me when I bug him too much. He says, "please just leave me alone."  I'm glad he can recognize those times when those pre-adolescent feelings kick in! My relationship with Dominic is starting to change and evolve, just like Lauren and I need to change with it, right???

Wednesday, February 22, 2017

Why I Am Choosing to Talk Openly About My Skin Cancer

I am what you would call "lackadaisical," about using suntan lotion and sunblock. Back in my teenage years, I thought using baby oil would give me that coveted glossy "sheen." I would be that gal on the beach that would be there for hours, with NO umbrella. More than once, I burned my skin so bad that it hurt to sit down. Did I ever think I would get skin cancer? Nope. Did I think I was invincible? Yep.  Below is me from the early 1990's when I went to Jamaica.  I was red as a lobster.



Well, flash forward to the Summer of 2016. I was at an appointment with my doctor and I showed her a mole on the back of my left calf. She told me at the time it was nothing to worry about, the mole was okay, she didn't suspect skin cancer. Towards the holidays, I began to notice the mole getting larger and changing colors. I was super busy and figured I would ask my doctor to take a look at the mole at my physical in January of 2017. Well, once she took a look, she was like, "Catherine, how long has that mole looked like that?" I said,"oh, a few months." She immediately did a "punch" biopsy and said I would get the results in about a week. I knew when she called me personally, the news was probably not good. It wasn't. She told me I had Malignant Melanoma and I would need to go to the Melanoma Clinic at the University of Michigan in Ann Arbor to confirm the diagnosis. I got an appointment a week later and it was confirmed that I have Stage 1B Malignant Melanoma skin cancer. Even as I was sitting in a hospital gown, I still was hoping it was a mistake and I didn't really have skin cancer. During that appointment, I talked to two doctors and they said, "can you come back tomorrow? we will remove the mole."  My husband was able to rearrange his schedule to be able to take care of Dominic, and since I was getting a "local," I drove myself there and back. I figured since they removed the mole, and it had only looked strange for a few months, that would be the end of it. I had to wait five business days before I got the results and the doctor who removed the mole called me and told me the cancer was deeper than they originally thought and I would need to see a surgeon to schedule my surgery. Excuse me? When I went to see the surgeon on Valentine's Day, she said, "we shouldn't need to do a skin graft." What??? I already have a one-inch scar from where they removed the mole. My surgery is scheduled for March 23 and I will be getting  a "Wide-Local Excision of left calf Melanoma with Intra-Operative Lymphatic Mapping and Sentinel Lymph Node Biopsy." Quite a mouthful, huh? There is a 15 percent chance that the cancer has spread. I haven't felt sorry for myself because all three times I have been to the cancer center,  I have seen patients less than half my age in wheelchairs with no hair. I am hoping by being so open about my experiences, if just one person goes to their doctor when they notice a change in a mole, instead of waiting like I did,  then hopefully it will spare them having to go through what I am going through now and what I am putting my family and friends through. Consider it a "Public Service Announcement." For more information, visit the American Cancer Society's website: https://www.cancer.org/cancer/melanoma-skin-cancer/detection-diagnosis-staging/signs-and-symptoms.html