Monday, December 31, 2018

A New Year, A Fresh Start



I have said this before and I'll say it again, my husband doesn't make New Year's Resolutions. This afternoon, I asked him why (because I couldn't remember). His response, "most people that do that, break them." Hmm, that's somewhat true. Is that because we set our expectations too high? are we setting ourselves up to fail?? A lot of people try and lose weight in the New Year.  I have been thin and I have been heavy. I am an "emotional" eater. I deal with stress with overeating. Not a good thing, I know. With the unexpected passing of my mom in May, I have definitely fallen off the "wagon." It's been over seven months, time to pull up my big girl panties and start watching what I eat better. I have been putting off having some bloodwork done, because I already know what it's going to show - high levels of everything! This afternoon, I scheduled an appointment to see my doctor next week (I also scheduled an annual physical).  One thing about my doctor which I really like, is that she doesn't "shame" me and make me feel bad. Okay, let's talk mental health now. Several celebrities this year have made the decision to end their lives.  They had buckets of money and tons of fame, but still weren't happy. Depression and anxiety are REAL. If you are struggling, reach out to your doctor or a trusted friend. It's not a sign of weakness, it's a sign of strength. I have said this before and I'll say it again. I wish I had gotten on my anti-anxiety medication a LONG time ago. It took me over 40 years to find out my excess worrying was Generalized Anxiety Disorder.  A few weeks ago, I was looking at the Obituaries in the paper, I know a bit morbid. I was mentioning to my husband that there was a gal that was just 22 that had passed away from suicide. That is the same age as Lauren, so it caught my eye. Later on that same day, I was heading to the Deaf Ministry Mass. Before I stepped out of the car to go in to the church, Lauren texted me. She said, "do you remember S. from gymnastics? she passed away." I was like, "I read an obituary for a 22-year old this morning." Turns out it was the same person the hubby and I had been talking about. I can't even imagine the pain the parents must be feeling, especially so close to the holidays. We had Lauren home for an entire week. Even though she is busy with her job, her friends and her new apartment, she still wanted to hang out with us. As much as I would have liked to go back to Maryland for the holidays, it just wasn't possible this year. I try to call my dad every night. He had a few health scares recently that I haven't really mentioned.  As I was wrapping up the nightly call tonight, I told my dad, "I know that we lost mom this year, but I am blessed to still have you in my life, Dad." He said, "me too." It's been a hard year in some ways, but it's also been a good year too. It's a brand new year starting tomorrow and also a fresh start! If you see someone struggling to keep a door open, help them. Have a boatload of groceries and someone behind you has two items? Let them go ahead of you. Random acts of kindness are not hard. Happy New Year to you and yours!

Monday, November 26, 2018

Craving a "Routine"

Dominic has not been in school since Tuesday of last week. He craves his "routine" and predictability. Saturday night, Dominic seemed kind of "off."  Yesterday morning, it was continuing. Given that he has had nine seizures, my mind instantly went to that. I kept encouraging him to lie down and rest. He kept telling me no. We decided to decorate the Christmas tree in our living room on Sunday. The hubby put the lights on and Lauren, Dominic and I started putting on the ornaments. Dominic didn't crack a smile the entire time we were decorating, he was actually unsteady on his feet and his pupils were dilated.  I started getting really concerned and was thinking I should call the pediatric neurologist on call. Before I did that, I decided to try something first. I took him into the family room, had him sit on my lap and let him snuggle and close his eyes for a bit. I had Lauren turn off one of the lights. We stayed in the other room for about 15 minutes. After that, he seemed to get back what we call his "sparkle" just a little bit. I sometimes forget that he needs more structure at home.  Even though I write down his "schedule" on a whiteboard every day, on the weekends and days off, it's definitely more "unstructured." We have a very sensitive smoke alarm near our kitchen. I think some turkey drippings fell into the bottom of the stove, so any time I've tried to cook or bake something at 400 degrees or above since Thanksgiving it's gone off.  The weekend was just a tad warm, so the stink bugs decided to make a few appearances.  The smoke alarm and bugs are two things that are definitely not predictable.  Since his language is still not what a ninth-grader's should be, we sometimes still have to rely on the way Dominic acts. Back when he virtually no language, that was the only way we could tell if something was wrong. Anyways, by last night, the "sparkle" had definitely returned.  I know Lauren worries about her little brother, so I sent her a text saying he was acting more like himself. She was relieved. This morning about 5:15 a.m., our phone rang. It was the school system where we live telling us school is cancelled because of snow. As soon as that call came in, the phone rang again. This time it was my husband's office saying they were closed. Since we let the answering machine get it, the phone rang again because he had to punch in a number to confirm he got the call. Then my cell phone rang. My husband had his phone off, so once he turned it on, his phone had a couple messages too! Good grief. Usually Dominic can sleep through anything. Not this morning -  he was up and about, roaming around wanting to get up for the day.



I've heard him yawn a handful of times from the family room. He doesn't need words to tell me he's TIRED, I think the yawning is telling me how he feels!!!!!!

Friday, November 16, 2018

Comfort Zones

So, what is your "comfort zone?" The place you feel the most comfortable? For me, that place is the kitchen. Earlier this week, a group of my friends and I were treated to some "gourmet" cooking lessons. The location was kind of in the middle of nowhere, up a dirt road. The house was brown and looked very non-descript from the outside. We had to walk down a bunch of steep steps outside to get to the kitchen. It was worth every single step to get there, because once you opened up the door, it was like you were on the set of a Food Network set! For this gal, I was in HEAVEN. I am what you would call a "self-taught" cook/baker. My mom instilled in me the love of baking, but cooking for me has been trial and error. I started my food blog almost seven years ago, because I wanted to share my love of cooking and baking with other home cooks. One of the highlights of my life was when I got a call from the producers of the Rachael Ray Show on the way home from Kroger. They asked me how often I watched the show and being the honest person I am, I said something like, "whenever I can!" WRONG ANSWER, they never contacted me again! Anyways, back to the gourmet cooking lessons. As I was looking around my "dream kitchen" I saw some pictures of Chef D. with Rachael Ray, Alton Brown and Tyler Florence. When I started chatting with her about meeting famous chefs, she was extremely humble about it. That is the kind of person I gravitate to. During her cooking lesson, she never once mentioned that she knew a bunch of famous people. Oh my, the food was delicious. It was so cool that we all had a "hand" in putting the entire meal together. Given my love of cooking and baking, I have been sharing my recipes through a local women's magazine in the area for about three or so years. It has been a blast collaborating with the photographer at the magazine, because she gives me ideas for the monthly recipe and vice versa. For the January recipe, she and I decided an "African Peanut Soup" would be good. Since I have never made that kind of soup in my life, I was going way out of my comfort zone as far as recipes go! This soup has a ton of spices. Growing up the most adventurous I got with a spice was salt. LOL. There is also peanut butter in this soup. Sounds kind of unusual, doesn't it? Well, I am happy to report that the soup was really yummy!! My buddy, Mary, the photographer, took a fabulous picture of it!! She and I have a good partnership going, I make the recipe and she takes the pictures!!

Photo Credit: Mary Gajda

African Peanut Soup with Sweet Potatoes

2 tablespoons butter, unsalted
1 cup sweet onion, chopped
2 cups sweet potatoes, chopped
32-ounce box unsalted vegetable stock
14.5-ounce can petite diced tomatoes, undrained
½ cup smooth peanut butter
6- ounce can tomato paste
½ teaspoon salt
½ teaspoon ground ginger
½ teaspoon curry powder
½ teaspoon ground turmeric
½ teaspoon ground cumin
¼ teaspoon ground nutmeg
¼ teaspoon ground black pepper
2 cups chopped kale leaves (rinsed and patted dry)
½ cup unsalted roasted peanuts, finely chopped (for garnish)

In a large stockpot, melt the butter slowly and then add the onion. Over medium heat, cook the onion until it starts to get soft, stirring occasionally.  Add the remaining ingredients in the order given. Bring to a boil and then reduce to a low simmer and continue cooking uncovered until the sweet potatoes get soft (about 20 minutes), stirring occasionally.  Add the kale leaves and cook another 10 minutes. Pour into bowls and garnish with the peanuts. *If desired, before you pour the soup into a bowl, you can add a cup of brown or white rice. Serves 6-8. 

Tuesday, September 18, 2018

We Don't Take Him Out in Public

With Dominic fully immersed in adolescence, it's not often I think back to the time when he was non-verbal, had no eye-contact and was difficult to manage. One of Dominic's favorite things to do when he was young, was run from the backyard to our front yard and into the street. He had no sense of danger and could care less if there was a car going by. Many times when we called his name, he would just ignore us. I would break into a full sweat at just the thought of taking him to the Kroger. When I did venture out, I brought Lauren along and when Dominic would start having a meltdown, I took out my anger on Lauren. It wasn't fair to her and I knew that at the time, but unfortunately, Lauren bore the brunt of my frustration. I never knew what pure exhaustion was until I had Dominic. Taking care of a child/adult with different needs is 24/7. As Dominic has gotten older and we have worked with him, it has gotten much easier to take him out and about, travel, etc. The only challenge we have now is that he is 3-4 inches taller than me and he doesn't know his own strength. This past Sunday, one of the non-profit organizations I volunteer with had a "Sensory Friendly" event at our local pet store. We had the whole store to ourselves, so the participants don't have to worry if their child had a meltdown or covered their ears. No explaining to the other parents needed to be done, we ALL understand. For me personally, there is something extremely comforting about that. Anyways, since this particular event is so popular, we decided to have two groups (each 30 minutes long). Dominic came along with me, which that in itself is a MAJOR thing. He has had "issues" in the past with animals, but he can pick up on the "vibe" of the pet store, which is very laid-back, plus he had been there once before. 


Our first session went fabulous and everyone had a wonderful time. As soon as the second session started, Dominic saw a fly. He is petrified of any type of bug, so he started getting visibly upset. I told him he could step out of the room we were in, but to stay nearby so I could keep my eye on him. That worked well until one of the times I went out to check on him, someone was walking by and I grabbed him from behind and told him to wait. That didn't go over too well and his frustration level rose. Dominic's private speech therapist and I have been working for months on helping him regulate his feelings and if he feels the need to hit, we tell him to hit a pillow. At home, he will sometimes hit a door or a window, which still isn't the best, but it's still a work in "progress."  Well, since there was no pillow at the pet store, he started hitting his head with his hands. I felt 100% helpless and could feel that old, familiar frustration I felt when he would meltdown in public many years ago. I had a room full of people, so I pushed that feeling down and stayed calm while Dominic was hitting himself in the head, assuring him that we would be going soon and that he was okay. He calmed down relatively quickly. He continued to stay outside the room and I went back in. In this second group, there was a family with three boys on the Autism Spectrum and the other family had a little boy (about 3 or 4) with Autism. The little boy was fascinated by the animals in their cages, I don't think he sat down the whole half hour! He had a smile on his face the whole time, you would have thought he grew up in the pet store, he was that comfortable! As I was chatting with the mom, I said something along the lines of "oh, have you ever taken him to a pet store before?' Her response floored me. She said, "no, we don't take him out in public." At first, I felt like sobbing, because I felt so sad for the family, but then I thought, that was exactly what I did when Dominic was the little boy's age. I was that mom. I would stay home with him, because it was so difficult to take him out. I was so glad that all the families that came to the pet store made the effort to leave the cozy confines of their homes to venture out and try something new. It is much more comfortable to stay at home. There is no judgement, dirty looks or rude comments. I know that not all parents with special needs children and adults want to go to "separate" events. What I like to say to those parents is this - it is just an "option." It doesn't mean you have to go, just because you or someone you care for has a disability. I think that is why I am so incredibly passionate about wanting to help others differently-abled. It was such a lonely and isolating time when Dominic was younger that I don't ever want another parent to feel the way that I did.  I don't say that to make you feel sorry for me, it's just the way it was!! 

Friday, August 17, 2018

New School, New Concerns



Last night, the hubby took me by surprise by what he said. I was telling him that Dominic and I would be heading to the high school to get his class pictures on Friday. He said, "I wonder if Dominic will be bullied." As one who was bullied in high school, it immediately brought back the feelings I try to keep buried, bubbling to the surface. I graduated 36 years ago, but it takes just a split second to feel that familiar sadness and anger. A definition of a bully according to the Merriam Webster Dictionary is:

"one who is habitually cruel, insulting, or threatening to others who are weaker, smaller, or in some way vulnerable."

There were a couple groups of girls that thrived on bullying me. They would continue to threaten me until I gave them what they wanted, to see me cry. I played sports with some of these girls, so at times it was very unpleasant. When I became a parent, I hoped that my children wouldn't be bullied. Unfortunately, Lauren went through a time when she was bullied in school. It was so hard to not want to go to the parents and say something. I really had to restrain myself. I think the hubby and I both have concerns with Dominic, given the fact that he has kind of been like in a "cocoon" at the two middle schools he attended. He has been with the same group of kids for several years and he is accepted 100% for the person he is. The high school he is going to is several times larger than where he just finished eighth grade. So, that's one challenge. Another challenge is that everything will be NEW. New rooms, new bus driver, new routines. Dominic likes to talk to himself when he is over-stimulated. Will the kids that don't know him, think that's weird? or strange? I am on social media a lot because I manage the Facebook pages of two non-profit organizations specifically for those with Autism and other special needs. I see the awful videos and articles of kids being bullied. I feel sad for those kids and I don't even know them. How will I feel if I find out Dominic is being bullied? He doesn't have the language to be able to tell me. He doesn't pick up on social cues very well, so he wouldn't even know if someone was treating him mean. That's what breaks my heart in half, the fact that he won't be able to recognize if he is being bullied. Through my connections that I have with other parents who have had their children at the high school, I can say, that I have never heard of any child being bullied. I will keep my fingers crossed, as Dominic heads to school on August 27 that he will not be the first one.

Sunday, August 5, 2018

Advice for the New School Year


"Dominic is one of the brightest individuals I met. I was very lucky to have him in my classroom this summer. He definitely made me a fan of Wheel of Fortune. If you ever need anything, please don't hesitate to call." 

Wow. That was the note I got from Dominic's teacher on his last day of summer school.  Those four sentences are exactly what I LOVE to hear. When you have a child with limited or no speech and you ask them how their day is at school, you either get silence or very few details. This is the way it has been since Dominic started school at age three. He just turned 14 on July 25. We have been so lucky to have gotten fabulous teachers who call, write notes, e-mail or text.  I admire and appreciate all Special Education teachers, paraprofessionals, aides, speech therapists and anyone else that works with kids/adults in the school system. I know I couldn't do it. Back when we were just starting out, I talked to another mom about her "experiences" with our local school system. She had nothing but negative things to say. Her philosophy was to constantly battle and fight. Hmm. If I had listened and BELIEVED this gal, yikes. My "operating style" is to not believe in gossip and to give everyone a fair chance before forming my own opinion.  As I found out later, this gal had quite the reputation and not in a good way! Needless to say, I distanced myself from her. When we started on this Special Education school "journey," I didn't even know what an Individualized Education Program (IEP) was. I do now. I have always treated anyone that interacts with Dominic in the school system with the utmost respect. They meet many different types of families. I want our family to be remembered in a positive way. Now that we are into August, many schools will be getting ready to open their doors for the coming school year. Since I have over a decade of experience under my "belt," with the Special Education school system, here are some words of advice. Parents and caregivers - if you are just starting out, try to work with and not against those that interact with your child. Always keep the lines of communication open and don't let a small issue become HUGE. Don't expect the school system to do EVERYTHING for your child. That is unrealistic. You need to be a full participant in knowing what is going on with your child. To those special education teachers, aides, social workers and everyone else that comes in contact with those differently-abled in the school system, we know that your job can be frustrating, exhausting and hard at times. I apologize for those parents/caregivers that make your job difficult. It can take a while to accept that your child has special needs. Some parents are never able to accept it. I can only speak on behalf of my husband and I, but since Dominic isn't able to verbalize to us what happens at school everyday, my husband and really appreciate the extra time it takes to call, e-mail, text or write us a note! Here's to a great school year!

Thursday, July 19, 2018

Welcome to "Holland"


Have you ever heard of the "Welcome to Holland" story? I had heard of it, but never read it until about a week ago. It is written by Emily Perl Kingsley, a mom to a son with special needs. It is not specific to Autism, it can apply to any disability. Here it is:

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


Okay, let the story sink in a bit. When I was pregnant with Dominic, I was stressed out every single day. I had two miscarriages between Lauren and Dominic, so I was petrified that I would have another one. I went into labor about two weeks early (he was born on July 25, 2004)  and Dominic's birth was relatively uneventful, though the cord was wrapped around his neck a few times. I remember the doctor going, "don't push!" and she gently unwrapped it. Dominic cried a lot and didn't sleep much, but since it had been eight years since Lauren was born and Dominic was a boy, I just thought that's what they did. The time after his birth was a blur. My father-in-law was ill and we were traveling back and forth to Cleveland. He passed away in April 2015. Out of respect to my mother-in-law we let her stay in Cleveland, but we were traveling back and forth from Michigan. After a year, I told my husband we needed to move her near us (he is an only child). We then spent time cleaning out their house to get it ready for sale. During this whole time, my focus as far as Dominic was concerned was to make sure he got his diaper changed, nurse him and feed him. I truly didn't have the time to interact with him other than that. It wasn't until he was about 2 1/2 and the "dust" had settled a bit that my husband said, "hey, he doesn't seem to be talking." I was like, "he's fine, nothing's wrong." Well, we had him tested through our county's Early Intervention Program and he was diagnosed with "significant speech delays." Even then, the word Autism wasn't anywhere on my radar screen. It wasn't until I noticed other things like lining things up, hands on his ears and the no eye contact that I began to think to myself, could it be Autism? Sure enough, our pediatrician confirmed the diagnosis shortly after that and at three Dominic's psychiatrist diagnosed him with ADHD. Three years ago, we got the diagnosis of Epilepsy. I can only speak for myself, but did I wish he had Autism, ADHD and Epilepsy when he was born? Nope. But, you have this child who needs you. You will become stronger than you ever thought possible. You will meet people that you would have never met otherwise and some of them will change the course of your life. You may become lifelong friends. You become an advocate. Some days you are so exhausted physically, emotionally and mentally that you literally have nothing left to give your significant other or your other children and that will make you feel racked with guilt. It's not easy. It's okay once in a while to feel sorry for yourself and your situation. You wouldn't be human, otherwise. Just try to keep moving forward and don't look back or you will miss what is right in front of you. 


Saturday, June 30, 2018

My New "Relationship" with the Sun


Long gone are the days that I would sit on the beaches of the Atlantic Ocean for HOURS at a time with just baby oil on my skin for protection. When I look down and see my 3 1/2 inch scar on the back of my left calf, I know it was a very small price to pay for getting diagnosed with Malignant Melanoma Stage 1B Skin Cancer in January of last year. Melanoma is a deadly cancer. I know that I was really, really lucky that it hadn't spread to the rest of my body. Once you have Melanoma, your chances of getting it again increase. The sun and I have a much different "relationship" now. I mow the lawn with sunblock, sunglasses and a hat. The umbrella we have been using for years is not meant for a table on a deck - it's barely bigger than a regular umbrella. I did some research and got a nine-foot umbrella with UV protection - I didn't even know such a thing existed! Even though it is the summertime, the first time I went to my dermatologist after my surgery, I got an "earful" about wearing nail polish on my toes - one of the signs of Melanoma shows up as black streaks on your fingernails/toenails - you can also get it between your toes! A few years ago, I was diagnosed with Glaucoma.  I go for exams 3 or 4 times a year. When I went to my first appointment after my cancer surgery and told my eye doctor I had Melanoma, he tilted the chair way back and checked to make sure he didn't see any cancer in my eyes. I also have cataracts and get my optic nerve tested from time-to-time. It's quite a production, but worth every minute I am there. It was my primary care physician who discovered my abnormal mole on my calf at my physical and immediately took a biopsy. It just happened to be a mole I had already been watching. I shudder to think if it been one I hadn't been watching. I typically don't dispense medical advice, but the next time you have a physical, ask your doctor to do a quick full body exam. I personally think it should always be a part of a physical, no matter the age! Though rare, children can get Melanoma. I still enjoy the sun, but I am lot more careful.  Please, please, please don't make the mistakes that I made, not wearing sunblock and thinking I was invincible. It could catch up to you one day, just like it did with me.

Wednesday, June 20, 2018

Continuing on the "Path" to Independence

Something happened last Friday night that I thought would never happen, at least not for another couple of years. Do you want to know what that was?!?!? Well, let me tell you!! We attended a party for a neighbor's daughter who just graduated from high school and we left Dominic by HIMSELF in our house for about 30 minutes!!! We had explained to him thoroughly where we were going and when we would be back. We also asked him if he was okay with it and he said yes. The party was literally across the street from where we live, but still. Both the hubby and I wanted to go to the party and we both knew if we brought Dominic, the minute he saw a bug, he would go running back to our house, dragging one of us back there with him. We timed it perfectly, because from 7-7:30 p.m. Dominic watches his absolute favorite show, "Wheel of Fortune." Nothing short of a tornado taking the roof off of our house would disturb him while he is transfixed to the television for that half hour! Since Dominic was a toddler, I have told him, "don't open the door to strangers."  I knew he understood, but up until recently, he couldn't tell me that he understood. When he and I are alone in the house and I need to take a shower, I hoped and prayed that he wouldn't let a stranger in. A few weeks ago, as I was stepping out of the shower, I heard the doorbell ring. I don't know how long the person had been there, but Dominic did not answer the door! The hubby was coming back from somewhere at that exact moment and he ended up answering the door. I was SO proud of Dominic, he listened to me! Lately, when I have been reminding him of things, he will ignore me. But, that's not Autism, that's called being a teenage boy! LOL. For a few minutes at the party, I actually didn't worry about him. In the very back of my mind, I knew there was a small possibility he could have a seizure, but he has gone about 3 1/2 months without one. I think we have finally gotten the right dosage of the anti-seizure medications!! I know that I sometimes (okay, more than sometimes) "baby" Dominic.


It really doesn't do him any favors, if anything, it prohibits his independence. It's really, really hard for me to not want to do things for him. I think it's in my nature, I am the oldest of three and I've always looked out for someone, starting with my little brother. When the hubby and I came back from the party, I was going a little overboard with the positive praise. Dominic didn't think it was any big deal. When Lauren came home briefly this past Sunday, I told her about him being by himself. She also thought it was pretty cool and was praising him.  Dominic just finished eighth grade and is moving onto the local high school. Wow, that came fast!! He matured in a lot of ways while in middle school. He grew several inches, he started using deodorant (though the hubby didn't believe me until he took a whiff of Dominic's armpit), I trained him to stay away from the stove (that took a while) and he grew a moustache, just to name a few.


We are working on some other life skills this summer before he starts ninth grade. I know that I will face a lot of resistance because I have waited so long to teach him.  Better late than never! Wish me luck! I'll need it.....
.

Saturday, June 2, 2018

What It's Like Living with Three Heart Conditions

Back in November of 2011, when I went in to the hospital for a stress test because I was noticing shortness of breath and an irregular heartbeat, I ended up getting a cardiac catheterization. It was determined that I have Non-Ischemic Cardiomyopathy; Left Bundle Branch Block and Congestive Heart Failure. Whenever I tell someone I have those heart "issues," they are usually surprised. I think they pictured someone in their 80's or 90's, bedridden or in a wheelchair and hooked up to oxygen. That's what I originally thought too!! Non-Ischemic Cardiomyopathy according to Healthline is a "disease of the heart not associated with coronary artery disease; it manifests in either mechanical or electrical dysfunction of the heart."  According to WebMD, "normally, the electrical impulse provided by the bundle branch travels down both the right and left bundle branches at the same speed and the ventricle contract at the same time; if there is a block in one of the branches, it's called a bundle branch block; a bundle branch block causes one ventricle to contract just after the other ventricle, reducing the overall efficiency of contraction." Congestive Heart Failure in it's simplest terms "is a chronic condition in which your heart muscle weakens and can't pump enough blood through your body." Sounds complex and a bit overwhelming, doesn't it? It's now been 6 1/2 years since I was given those diagnoses and been on a "low-salt" diet. On the rare occasion I eat something with an "abnormal" amount of salt, like New England Clam Chowder or the skin off the Meijer fried chicken, then I will retain the extra salt for a day or two. My ankles in particular retain the extra fluid and will swell up. I know it will be hard to walk the next morning. The swelling doesn't hurt, it's more like it's a "tight" feeling. I currently take four medications daily: Furosemide, Pravastatin, Metoprolol Succinate and Potassium Chloride. I have never been a "pill" person, but I also know I must take them because it helps me maintain a normal lifestyle. Have you ever heard of an "ejection fraction?" WebMD says, "Ejection fraction is the amount of blood -- given as a percentage -- pumped out of a ventricle during each heartbeat. The ejection fraction evaluates how well the heart is pumping. Normal ejection fractions range from 55% to 65%." Taking my "cocktail" of medications keeps my ejection fraction within the normal range. The Congestive Heart Failure and the Left Bundle Branch Block, I inherited from my mom. The cardiologist isn't sure how I acquired the Non-Ischemic Cardiomyopathy, he told me once there are over 100 different ways it could have been caused. Having three heart conditions doesn't necessary mean I will end up bedridden with an oxygen tube in my nose.  For me, at this time in my life, I'm still able to do pretty much everything I was able to do before I was diagnosed. As long as I continue to take my medications, go to my appointments with my cardiologist and get regular echocardiograms, I plan on being here for a long time!





Monday, May 28, 2018

Explaining "Loss" to Dominic

I first started writing this blog back in July 2011, because the first six months of 2011 were incredibly challenging (lots of personal losses). I needed a way to get out all of the emotions I had been holding in. My husband calls me the "glue that holds our family together." Well, that's sweet, but sometimes glue dries up and starts to "crack" a bit! I have never considered myself a writer (I have a degree in Business).  Anyways, flash forward to April 28 of this year. We had just dropped off my stepson and his wife at their hotel and were driving home from Lauren's college graduation. I was sitting in the back seat and started getting text messages from my brother that my mom was going to the hospital for an infection. The next day she was eating applesauce and was in relatively good spirits. I was totally caught off-guard the next day (Monday) when my brother called me to tell me my mom was gravely ill. My first extinct was to hop on a plane and fly back there. I knew my family would want to be with me, so I made the decision to wait until Tuesday. Unfortunately, she passed away as we were driving back to Maryland. My siblings and our families were able to put together a very nice service on short notice.  I was extremely concerned that Dominic would be so out of his routine that he would start having seizures. He has had nine, the most recent one in March. I made sure Dominic had his "travel" schedule, which is a spiral notebook that is only used for when we travel. I also packed up his other favorite items. He knew my mom who he called, "Grandma Martha," pretty well. Funeral homes are not exactly the best place to have a child, much less a child with Autism, hanging out for hours. I let him go to the very back of the room and play with his favorite items. I asked him three times while we were there if he wanted to go up and see my mom. He told me no and I didn't push the issue. Dominic was very respectful and quiet during the whole day and it was a LONG day. When we got back home to Michigan that Sunday, we settled back into our routines. I like to think of Dominic's brain like a file cabinet. He sees and hears everything that is going on around him, even though it may not seem like it. He "files" things away for later use. When my mother-in-law passed away at the beginning of 2011, we struggled as to how to "explain" that loss to him. We ended up telling him that she was "broken" and we couldn't "fix" her, so she went up to heaven.  In the weeks since we have been home since my mom's passing, I have asked him if he knows where my mom is. He has said, "no," which means he doesn't want to talk about it. Last Monday, I said, "do you know what today is?" I continued to say, "it's Memorial Day, it's a day to remember those who have passed away in wars." He then said, "up in Heaven." Just in the past week, Dominic has been voluntarily telling me that "Grandma Martha" is "up in Heaven." It has taken about a month, but I think he is finally making the "connection."


Tuesday, April 24, 2018

Making an "Impact"




I had someone very close to me ask me this question many years ago, "why do you stay in touch with so many of Dominic's old teachers, therapists, social workers, etc.?" The reason is actually quite simple, every single person that Dominic has met, whether they realize it or not, has made an impact on him. I have said this before and I'll say it again. When you become a parent of a special needs child, it's not like someone hands you a manual and says, "here you go, this has everything you will ever need to know about school, toilet training, puberty, etc.!" It would be great if there was, but unfortunately that's not the way life works. People will make comments and judge knowing absolutely nothing about you, your family or your circumstances. You may lose the friendships of other special needs parents along the way because you don't agree with the treatments they give their children (I have). You will learn to become a HUGE advocate for your child. I had a special needs dad tell me over the weekend at an Autism event I was helping to host, that he knows a family with a 10-year old son with severe, non-verbal Autism. The parents have "given up" on their son. They have no expectations at all for him. I do not know the family personally, so I am in absolutely no position to judge why. I just found it incredibly sad. I hope at some point in their son's future, they change their mind. It can be quite lonely, overwhelming and isolating sometimes on this special needs journey. When we were trying to get Dominic potty-trained there were MANY times I wanted to give up. I knew in the long run it was to Dominic's benefit to be able to use the toilet independently, but oh my, it was SO frustrating!!! He had a teacher (when he was about nine) that would not let me give up and thank goodness he did eventually get potty trained! That teacher had a gigantic impact on our whole family. When we at the beginning of this journey with Dominic, he had a social worker that told me that Dominic during the day at school would recite/script parts of "Barney" videos and other movies or television shows that he had watched. It's Dominic's way of "stimming." It calms him when he is under or over stimulated. His social worker would tell him "stop the movie in your head!" I tell Dominic that when I feel he's spending just a little too much time in his own "world." Again, her words had such an impact on me, that I have used her phrase ever since and probably always will! I could fill up an entire sheet of paper front and back and still not be able to thank every single person that has impacted Dominic's life. Growing up, I was so shy - my second grade teacher even wrote on my report card - "something is wrong with Cathy, she never talks." I almost flunked out of Speech class in college because I was terrified of doing an "extemporaneous" speech! That is certainly not the case now - in the past six months or so, I have been given opportunities to do television interviews. I have stepped out of my "comfort zone" and done them. I am so passionate about helping those "differently-abled" and I feel it is incredibly important to speak for those that can not speak for themselves. I hope in some small way I've made an "impact" in someone else's life.  

Tuesday, March 6, 2018

Hopes and Dreams

 
 
At one time, the hubby and I had hopes that Dominic would go to college.  My husband told other people, "I think Dominic will go to college!" As the years have gone by and we have watched him get further and further behind academically, both my husband and I have come to the conclusion that our dream of him going to college will probably not happen. We had a meeting with his teacher early last week about which "path" we thought our son will be heading down this fall when he goes to the local high school.  If this was a meeting about a "typically" developing teen, we would have been discussing the classes he would be taking in ninth grade and college plans. Instead, we discussed him earning a "Certificate of Completion," and continuing to learn basic self-care and life skills. I think in that moment, I realized the dream I had been keeping in my head for all these years was gone. My entire focus, not just parts of it, instead should be on helping him to find those skills he is the best at. Both my husband, Dominic's teacher and I are in agreement that we would love for Dominic to have a job. Legally, in Michigan, he can be in the school system until he is 26, so he is halfway done.  Last week, I told three of my close friends about the meeting with Dominic's teacher.  I have to admit, the first friend I told, I got kind of choked up and could feel myself on the verge of tears. It's one thing to think it, but to verbalize it has been difficult. One thing I've discovered though, the more people I tell, the easier it gets. When Dominic was first diagnosed at 2 1/2 with Autism, I spent two weeks coming to terms with it. I think it is important to go through that process before you can move towards full acceptance. Finally letting go of my dream that Dominic will not be going to college took about a week. Now, it's time to move on!!

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?

Presume Competence

Since we have traveled outside of the United States since Dominic was very small, we have had to get him a Children's Passport every fiv...