Thursday, November 9, 2017

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 would go over and talk to them. This was my opportunity and I grabbed it! I went over and sat down and told them about the ministry. They were the nicest, sweetest and kindest women! Over the past year, I have gotten to know the three ladies and we have shared so much with each other. When I told them about my Cancer in January, they prayed for me. When one of the ladies and her daughter needed a ride home from a recent doctor appointment, I helped her out. This trio of ladies have become like Dominic's "surrogate," grandmas. They have become my friends. It has been an incredibly eye-opening experience to listen to the ladies talk about their experiences as caregivers. The half hour goes by very quickly and usually I'm not done yakking when Dominic is finished!!! Last week, I didn't bring Dominic to music therapy because I didn't feel well. Yesterday, the ladies were all asking where I was. It's nice to be missed!!!

Monday, October 16, 2017

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 teacher, speech therapist, social worker, etc. assured me that he was around other kids frequently during the school day. I asked about what would happen next year. They told me he would be heading to the high school and there would even be more chances for Dominic to be around typically-developing and special needs peers. That put my mind at ease. Imagine my surprise and delight, when I checked my emails after the IEP and found this message from a mom I had met during Dominic's last swimming class this past Tuesday:

Hello Cathy,

It was nice meeting you earlier this week.  I always appreciate a positive connection with another mom especially one who probably shares a similar day as I do! Anyways, I just wanted to say hello and reach out to see if you would like to join me and my son for a Mom/son play date sometime?  
It seems like when you least expect it, an opportunity just kind of falls into your lap! The little boy we are going to get together with is also on the Autism Spectrum, so it should work out well. Hopefully, it's the first of many times!!!

Sunday, September 17, 2017

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. Two of the non-profit organizations I am affiliated with are joining together to sponsor a music event in the evening. Last Wednesday, his music therapist handed me a sheet of paper listing the songs and order of everything for the joint music event. I noticed Dominic's name was next to five of the songs. She told me he would be accompanying on the piano!! What an incredible and unexpected opportunity for Dominic. This afternoon, I reminded him about Wednesday and asked him to practice, then handed him the sheet with the songs. He has been playing for a couple hours already!! We are expecting a big group on Wednesday night, so I hope he doesn't get "stage fright!!!!"

Saturday, September 2, 2017

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 have in a jar than on you." Um, okay. She then said, "I will have the results for you in two weeks." I went and made an appointment with the receptionist and then drove home. I wasn't in any mood to do any shopping by then. The hubby and Lauren both asked me how it went when I got home, so I explained everything to them. Once again, for the second time this year, I had to tell my elderly parents that I may need cancer surgery.  I felt so awful at the thought of putting them through that again. I spent the next 15 days keeping extremely busy to try to keep my mind off of what the results might show. It was incredibly difficult to wait that long. Anytime my mind wandered and I started thinking about it too much, I got a feeling of dread in the pit of my stomach. The hubby was off last week from work and he came along with me to my appointment. Luckily, both biopsies were negative. Whew! The sun and I have a totally different "relationship," now. When I mow the lawn, I put SPF 50 on the parts not covered up and I wear sunglasses. When I sit on our deck, I put up the umbrella if I don't have sunblock on. I wear sunblock when I know I will be in the car driving around a lot. My hubby and I are doing monthly skin checks on each other, it's on our family calendar in black marker! I have learned two important things since this cancer journey started in January. One is, I have an incredible and large support system. Two, I am not at all embarrassed or self-conscious to have my 3 1/2 inch scar visible in public. It shows I am a "survivor."

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!