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Showing posts from 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). ...

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 tha...

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 ...

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 c...

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 thr...

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 "ex...

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...

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 ...

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! Sin...

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 on...

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...

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 advocat...

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, instea...

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 ...