Thursday, January 25, 2018

I May Never Know the Reason "Why"

Dominic has been fixated, you really could call it obsessed with calendars for several months. They cover part of our family room floor and if I try to move them or if the hubby, Lauren or I accidentally touch one, he gets upset. He spends hours on the floor looking at them and no matter how many times I try to redirect him to something else, like putting together a puzzle, he will tell me no, every single time. Last week, I asked him to hand me the March 2018 page from our master family calendar. This is what he handed me.    

I asked him where the rest of the calendar was and he brought over a bunch of torn up pieces of paper, handed them to me and said, "fix it." I tried for about a half hour to "reconstruct," the calendar and then realized it was a futile effort. I told Dominic, "there are some things even tape can't fix." I didn't get mad at him because I knew there had to be a reason "why," he ripped up all those pieces of paper. I saw on another mom's blog about a month ago that her son with Autism "hoarded," items. When I think of hoarding, I picture rooms filled with so many things that you have to crawl over piles to get from room to room, not a pile of torn up pieces of our March calendar that currently reside under our family room couch. I know basically nothing about hoarding and "why," children with Autism do it. When Dominic went to his private speech therapist this past Saturday, I told her about what was going with the calendar and the pieces of paper. I then asked her if she had ever heard of children with Autism doing that type of thing. Her response back was yes. My next question was why. She told me it's a way to cope with stress and anxiety.  Hmm, okay. When I have watched the shows on television about individuals that hoard, it makes no sense to the people coming in to help clean up the piles, but it makes total sense to the person that hoards.  I asked Dominic several times tonight if I could toss all the pieces of ripped up paper that are under the couch into the trash. He told me no. I asked him if he could tell me why. He told me no. Do I really need to know why? No.  Does his hoarding bring him comfort? Yes. Then, who am I to question "why" he does it?

Saturday, December 23, 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 that I didn't want to push Dominic too much to sit on his lap because when he's really stressed he is more prone to seizures. As the party started to wind down, Nana Claus was able to coax Dominic over to where she and Santa were. She put a chair about 10 feet in front of them and got Dominic to sit down. The whole time she was explaining what she was doing. She and Santa were finally able to get just a few feet behind Dominic and I was able to get a picture!

Santa and Nana Claus, thanks so much for going the extra mile and being so patient with Dominic. It meant so much to me!!

Thursday, December 7, 2017

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 few years ago and me getting diagnosed with Malignant Melanoma in January. When you are faced with your own potential mortality, it can't help but change you. I think when you go through that type of experience, you either become angry or you are grateful for each day. My dad and I fall into the latter category. Two days from now will be my 22nd wedding anniversary. The morning of my wedding day, December 9, 1995, I spent the night at my parents house. I couldn't sleep, so I went downstairs. My dad joined me and he and I chatted for a while before everyone else got up. He told me recently that he was thinking of that morning and how much it meant to him. Guess what dad, it meant a lot to me too!

My dad will be 83 in March. I know that I won't have him or my mom forever. The talk is at 2 p.m. today and I so wish I could be there. A few weeks ago, he did the next best thing, he read it to me over the phone. Since his stroke, he talks slower, but that's fine. I have to say, his talk was really interesting! He stopped every so often and said "you're probably bored." I told him I wasn't . When he got done, I told him that I was proud of him. It took a lot for him to go out of his "comfort zone," and I recognize that.   Last night, I wished him good luck. I know that my dad will do great and I can't wait to hear all about it when I talk to him tonight!! I love you dad.

Thursday, November 30, 2017

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 "#MeToo" 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 owner hired an older gentleman. He was easily three times my age. On more than one occasion, he made comments about my figure and how I looked in my clothes. It made me more than a little uncomfortable and I talked to the owner of the company privately. His response, "if you take him to court, I would be on his side." I can still remember his words this many years later. When I finished telling my dad the whole story he said something along the lines of, "I can't say that I'm surprised, that's the way it was back then." Excuse me?? It's never okay for that type of thing to be going on in the workplace. My experience sounds tame compared to the stories I've seen and heard in the news. After I moved on from that job, I took a night class at the local college. I had a professor that would come and stand behind me just a little bit too close. This happened so many times that I eventually dropped the class. I had passed the point of being able to get a refund, but I had to get out of the class for my own mental well being. I had actually forgot about that professor until all of these stories starting coming out in the news. Many of the accused men claim they are "sorry." Are they really sincere or are they "sorry" they got caught???? Time will tell.

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!

I May Never Know the Reason "Why"

Dominic has been fixated, you really could call it obsessed with calendars for several months. They cover part of our family room floor a...