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Showing posts from 2017

Thanks for Going the Extra Mile

Two weeks ago, I helped host a Special Needs Holiday Party.  I had Santa and Nana Claus lined up to make their appearance about 3 p.m. I had told Dominic that they were coming ahead of time, but since I have never taken him in the past to see them, I was a little apprehensive how he would act.  I took Lauren to see Santa a handful of times when she was little, but I guess I thought that Dominic wouldn't be able to handle it, so I never even attempted it. When Santa and Nana arrived, I went over to them and introduced myself because I had never met them in person, we had only corresponded by e-mail. They were so sweet and were circulating around the tables talking to everybody. When Dominic saw them, he decided to get as far as he could away from them. We had a large group and there were many that wanted to sit on Santa's lap. I was busy taking pictures and every so often, I would look over and Dominic was still on the other side of the room. I explained to Santa ...

I'm Proud of You, Dad

Back at least two months ago, my dad asked me a question. He LOVES history and as much as he's tried to get me interested, I'm just NOT . He has been at his assisted living facility back in Maryland for a while now. It's been hard on him at times, because he moved out of the family home where he had lived for several decades. Anyways, you're probably wondering what the question was, right?? Well, he asked me something like, "something very important happened on December 7th, it's Pearl Harbor Day." He went on to say that he was thinking of giving a talk to the other residents about that day. This would involve him going to the activities coordinator and getting him on the monthly "schedule." He asked me my opinion of what he wanted to do. Without hesitation, I said, " YOLO ." He asked me what that meant. I told him "you only live once!" My dad and I have had lots of talks this year about the stroke he had a f...

It's Never "Okay"

It seems like almost daily, another man is accused of sexual harassment, etc. I can't even keep track of it. It's like a lid has been pulled off a boiling pot and all the men accused are spilling out. What would have happened if all that stuff hadn't come out about Harvey Weinstein? How long would have all those men been kept in the "boiling pot?" I think the individuals coming forward are very brave and it makes me sad that they felt their voices were not heard for so long or that they kept it inside for years and sometimes decades. I told my dad recently about my "#M e Too" moment. I thought I had told him before, but evidently I hadn't. Anyways, in the late 1980's into the early 1990's I worked for a very small company as a receptionist. I was told by the owner of the company I had to always wear panty hose and a skirt/dress. I did it because I liked the job and the people I worked with. After I had been there a few years, the...

The "Ladies"

Dominic has been going to music therapy for a while at the Michigan State University Community Music School. During his half hour session, I sit in the lobby area along with other parents/caregivers.  There are a handful of tables and chairs and most people either read, use their computers and/or chat with the others at their table. Each Wednesday afternoon, when I came into the lobby, I noticed a table of  four ladies all older than me, chit chatting. They seemed to know each other VERY well. They all had special needs adult children/grandchildren that were also participating in music therapy. I would overhear them talking about topics that I was very interested in, but all the chairs were taken and I didn't want to be nosy, pull up a chair and just plop myself down and interrupt. One day about a year or so ago, one of the ladies didn't show up, so there was an empty seat. I had been bringing my sheet of disability ministry events and knew at some point, I wo...

The E-mail Every Special Needs Parent Hopes to Receive For Their Child

Last Thursday morning, we had Dominic's Individualized Education Program meeting (IEP). For those unfamiliar with what an IEP is, it is a document laying out objectives, goals and services for your student if they are in the special education system. Dominic has had an IEP since he started in the public school system when he was three years old. When I had talked to the school psychologist recently (before the IEP) about areas Dominic could improve in, I had mentioned that Dominic didn't really hang out or have play dates with other boys his age outside of school, go to sleepovers or do those other things 13-year old boys do. It doesn't really bother Dominic and I, but at the same time, I feel it would be good for him socially to be around kids his own age. I think it's a common thought for special needs parents. Anyways, Dominic's IEP went well and I mentioned it would be great for Dominic to get more socialization. The others at the IEP, which included his ...

An Unexpected "Opportunity"

When Dominic was a toddler, I would take him to music classes and he would cover his ears or bury himself in my lap because it was so overwhelming. Never in my wildest dreams did I think he would go from that to wanting to play the piano!! Dominic has been getting music therapy from the Michigan State University Community Music School for several years and each of the four music therapists that he has had have each taught him something different. He has "sampled" different musical instruments and now primarily plays the keyboard and/or piano during his once a week therapy session. Last year, when we learned of his high interest in playing the piano, we sought out a used one. We found one that was "free" and only paid to transport it. This past summer, he refused to play every time I "told" him to. I realized I had to "ask" him! Good grief. Dominic doesn't read music, he plays by memory. Anyways, flash forward to this coming Wednesday. ...

The Moment I Realized Routine Appointments to the Dermatologist Will Never Be "Typical," As A Skin Cancer Survivor

I had my first dermatology appointment since my March surgery on August 14. It was recommended to me that I go every six months the first three years after my surgery and then yearly. I went into the appointment thinking everything was fine, I would be in and out quickly and I would have plenty of time to do some shopping! The gal that I had at the dermatology office, examined me quite thoroughly, asked me a bunch of questions and then started circling moles! Hmm, I knew that wasn't a good sign. In that moment, I realized my routine appointments to the dermatologist will never be "typical."  She began telling me, "you do know that since you had malignant melanoma once, you are at a higher risk to get it again and for the cancer to metastasize, don't you?" I knew I was at a higher risk to get malignant melanoma again, I didn't know about the metastasize part. She said, "I need to do two biopsies, you have some moles that I would rather ha...

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 old...

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 ...

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...

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 ...

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 trem...

"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 s...

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 w...

A Recipe with a "Story"

Back in August of last year, I flew back to Maryland for part of a week and helped my brother start to clean out my parents house to get it ready to sell. I had my brother store some boxes for me at his house and when we were just in Maryland around the holidays, we put them in the back of our van and brought them back to Michigan. One of the boxes contained two of my mother's recipe boxes. Shortly after the new year, I took a quick look through the boxes and then didn't look through them again until a few days ago. Oh my, I found a  recipe card for a cookie that I thought I had in my "collection," but didn't. Growing up, there was a couple that lived next door to my family that had no children. Their names were Mary Ann and Harold. Even though we weren't related, they were like family to us.  Finding Mary Ann's recipe for "Mom D's Cinnamon Crisps," was like hitting the jackpot!!! I have been looking for this cookie recipe for years and thoug...

Maintaining a "Connection"

Lauren starts her second semester of her junior year of college this coming Monday! Good grief. That went by SO fast. In the "olden," days (when I was 20), there was no such thing as texting and Skyping to keep connected with family and friends. The "twenty-somethings," of today rely on texting, Snapchatting, etc. I think one of the happiest days of Lauren's life was when I FINALLY decided to ditch my TracFone !!! Yes, I now use an iPhone . Anyways, her winter break has been long and with the hubby and Dominic both going back to work and school today, respectfully, we decided to head out to the local outlet mall. I am so lucky that Lauren still values my opinion and I can be truthful with her. We hit three or four different stores and since the holidays are over, the parking lot/stores were pretty much empty. We got some really, really great deals. Lauren wants to go to law school after she graduates in 2018, so we were over the moon when we found ...