Sunday, February 9, 2020

Why Tim Tebow's Night to Shine Prom is So Important for those with Disabilities

This past Friday night was the second time Dominic went to the Tim Tebow's Night to Shine Prom. For those of you that don't know what that is, I will tell you!  For one night a year in February, over 700 churches from around the United States and the world host a Prom for those with differing needs. It doesn't cost a dime to attend and as long as you are at least 14 you can attend, there is no maximum age. There are dances at Dominic's high school (Homecoming, etc.)  and each time I have suggested to him to go, his response has always been a resounding no. He doesn't have enough language to tell me why he doesn't want to go, so it remains a bit of a mystery. I have my own thoughts as to why - too crowded, too loud and flashing lights. A prime setup for an Epileptic seizure. He's had 10 seizures in the past 4 1/2 years. There is a memory that is seared permanently into my mind from elementary school. This would have been approximately 1973 or so. We were walking as a class in the hallway, when the Special Education classes filed past us. I remember staring, because I hardly ever saw them. Those students were kept completely separate from the classes I was in. I'm sure they didn't like being stared at, but, I truly didn't know any better. I didn't understand what I didn't know.  Fast forward to 2020. My son Dominic has Autism, ADHD, Anxiety Disorder and Epilepsy and has been receiving Special Education services in school since he was three years old. He will be 16 this July. A lot has changed since the early 1970's, but there is still more that needs to be changed. The absolute worst thing you can do is keep the Special Education students separate from their typically-developing peers. The world is full of individuals of all different abilities.  If you would have asked me what Autism was back in the early 1970's I would have had no clue. Little did I know, I would have a son diagnosed with Autism when he was 2 1/2. Do you know what they used to call Autism? Childhood Schizophrenia. According to a recent article in Medical News Today, 

"it was not until 1980 that childhood schizophrenia became understood as a separate diagnosis - before that time, children who today would be diagnosed with Autism, which is a type of "pervasive developmental disorder" were grouped under the diagnosis of schizophrenia." 

That was a year before I graduated from high school. It was not uncommon to suggest even 20 years ago that you automatically put your autistic individual into a institution. There was a mental institution called the Crownsville Hospital Center in Maryland that opened in 1911 and closed in 2004 (the year Dominic was born). The conditions that those with mental disorders lived in were beyond deplorable.  It is a part of history that I'm sure many would like to forget never happened, but sadly it did. I am SO glad that in 2020, children with special needs are integrated into the "typically-developing" classrooms and there are events such as the Tim Tebow's Night to Shine Prom. When I looked around the room last Friday night, it made me wonder about some of the experiences the much older adults in the room must have had in their lifetimes. I wish I could have had the opportunity to talk to each and every one of them. I'm sure it would make me appreciate all of the possibilities that my son has now.    

Friday, January 17, 2020

Why I Continue to Share My "Story"

When I first started writing this blog back in 2011, it was because it had been a traumatic year and I felt that I needed a way to get my emotions out. One of my first posts was about my mother-in-law who had passed away in January. 2011 ended with me getting diagnosed with Congestive Heart Failure and spending the night in the hospital. As I started sharing my different experiences such as watching my daughter go off to college, little by little, the stress I had been holding in, seemed to dissipate. I could write about my aging parents, Dominic's different disabilities, and what it's like to be a stepmom. I have been told that my blog is kind of like the way I talk.  I am grateful and humbled when someone takes the time and reads a post. Yeah, I could sit out in front of my house in a lawn chair and tell my story to the people driving by, but writing a blog post and putting it out into the Internet reaches a lot more people. I had one of my blog posts on Yahoo less than a year ago. I was curious what people's comments were so I started reading them (there are 77).  Wow, just wow. The "trolls" were incredibly nasty. I truly couldn't believe that a post I had written about having Diabetes was getting so many negative comments. One of the nicer comments was "this person is fat and crazy." I decided then and there, that I would not read the comments unless they were specifically posted to my blog! Yikes. There are a lot of people out there that feel they can write whatever they want because they aren't talking to you face-to-face.  Online bullying is relentless. I was bullied in high school but it wasn't by people sitting behind a computer screen. It was to my face. As this blog has grown and evolved, I find myself writing more and more about our challenges with Dominic, specifically with Autism and Epilepsy. No one on either my side or my husband's side of the family has Autism. No one in my immediate family has Epilepsy. Raising a child with differing needs can at times be extremely difficult. I am not going to sugar coat it, it's hard. Last week, I was trying to talk to my husband about something very important. Dominic came into the room where we were and started saying, "mommy, mommy, mommy," incessantly. After telling him several times that I would be with him in a minute, I lost my patience and yelled at him. He immediately ran upstairs to his room. A little while later, he came back down and started hitting himself. He truly didn't know how to handle the fact I had yelled at him.  Watching him self-harm, made me feel extremely guilty. After he and I both cooled off, I gave him a hug and apologized to him. I know I'm not perfect, is anybody? I think back to those really early days with Dominic, when he would cry incessantly and not sleep. I would be nursing him in the middle of the night while my daughter and husband slept. Those nights seemed endless. I think I knew something was "off" but couldn't quite put my finger on it. When Dominic was diagnosed with Autism at age 2 1/2, it was like everything started to make sense.  We were able to start getting him some help. This July, he will be 16. Parenting a teenage boy with differing needs has at times been, ahem, interesting to say the least. I am blessed that I have women that I can turn to, because they are willing to share their stories with me! It makes me feel less alone knowing that. Isolation is something extremely common in the special needs "world." Lately, I have heard from parents that even within their own families they don't get the support they deserve. I love my dad with all my heart, but he has struggled with how to be around Dominic. It wasn't until he had a major stroke, that he started seeing Dominic in a different way. Dominic will still cover his ears and hum around my dad because he remembers when my dad would raise his voice to get him to behave. I feel it's important for Dominic to spend time with my dad because it's the only grandparent he has left. I have learned a lot about myself by continuing to write my blog and I will continue to share my life "story" with others because I feel it's important to make sure that people don't feel alone.

Thursday, October 3, 2019

To the Dental Hygienist Who Went Above and Beyond

Raise your hand if going to the dentist is your absolute favorite place in the world to go. Our "journey" with finding the right pediatric dentist has been YEARS in the making.  My anxiety at one point was so high, I totally avoided taking him. We tried the dentist my husband and I go to and Dominic hopped out of the chair and wouldn't cooperate. We went to a dentist that everyone said was wonderful and she automatically wanted to sedate him after seeing him for 30 seconds. Yet another time, we tried a dentist that a bunch of my friends said was the best around and he didn't really try and work with him. So, after asking a friend of mine who used to practice Dentistry, I finally got another dentist to try. I loved this fourth dental practice the moment I walked in the front door. The front staff, the hygienist and the dentist all tried really hard with Dominic. After him non-cooperating, it was mutually decided that he would need to go to our local hospital and get fully put under. This was in May of 2018 when he was 14. Prior to that, Dominic had never had his teeth cleaned or x-rayed. I imagined the dentist coming out and saying, "your son's mouth was riddled with cavities." I was very happily surprised when she said he had one small cavity between his teeth. I knew Dominic was okay when the first thing he said when he woke up was, "I want to go to McDonald's." Food has always been a very BIG motivator for him. The dentist then said, "he's good for another 18 months."  Tuesday of last week was when he had that appointment. I had written it on our family and personal calendars and it was on Dominic's "daily" schedule. True to form, my anxiety was through the roof the whole day. Yes, even though I take TWO medications for my Generalized Anxiety Disorder, for stressful situations like this, my anxiety goes into overdrive. About one hour before his appointment, I got a call that the dentist had a family emergency and we had to reschedule.  It was hard for me to process my emotions, in some ways I was glad we didn't have to go and in another way, I just wanted to get it over with. Flash forward to this past Monday at 3:20 p.m. (the rescheduled appointment). My husband works at home on Mondays and I told him I wanted him to come with me to the appointment. The entire time up until Dominic got home from school, I talked to my husband about how I didn't expect Dominic to cooperate and how he would have to get sedated no less than five times. When Dominic hopped off the bus at 2:50 p.m. I immediately told him that he was going to the dentist at least three times. In the back of my mind, I had already mentally prepared myself for him not cooperating. I fully expected having to go into a side office and discuss the date he would need to go to the hospital to be put under again, because that is what happened 18 months ago. We got to the office a few minutes early and filled out paperwork. Pretty close to 3:20 p.m. we went back to the room and waited there for about 30 minutes. Not the best scenario for a child with Autism. After making a little small talk with the hygienist about the weather, she then did something amazing. She started asking Dominic if the television above his head was too loud, if the lights were too bright. She kept reassuring Dominic that it would be okay. When she found out we were going to McDonald's after the appointment, she asked him what he was going to eat. She asked him how school was going. Truly, going above and beyond. She just didn't reassure Dominic, she reassured my husband and I.  She could have just left us alone in the room for those 30 minutes. She chose to stay with us the entire time. When the dentist came in, my husband reassured Dominic, I counted so the dentist could do what she needed to do (a few times she told me to slow down), the hygienist calmly held one of Dominic's arms and talked to him..  A few times he sat up and said, "time to go to McDonald's!" The dentist and hygienist calmly let him take his breaks when he needed to. The four of us worked as a "team" and Dominic was able to complete the exam. I was thinking to myself, "woohoo!" It finally went great!  By the way, Dominic LOVED his meal from McDonald's!

Tuesday, September 17, 2019

Knowing When to Ask for Help

Shortly after the death of one of my husband's cousins earlier this year in Cleveland, Dominic started telling me, "have to get Grandma out of the Burcham Hills." Burcham Hills is the care facility in East Lansing where my mother-in-law lived for several years before her passing in 2011. We visited my mother-in-law a lot and she came to our house for dinner at least once a week, so he got to know her pretty well. About a month ago, Dominic said, "Grandma Martha is wearing a black coat in the cemetery." As most people know, I am rarely at a loss for words. I truly had no clue what to say to that. My mom (Grandma Martha) has been gone about 16 months. About two weeks ago,  I had lunch recently with two of my very good friends. During the course of the conversation,  I told them about how Dominic was still coming to terms with my moms passing and the best I have been able to come up with was, "she was broken, couldn't be fixed and went up to Heaven." Immediately, one of my friends said something along the lines of, "if Dominic breaks something, he will think he is going to Heaven." I knew in that moment, I needed help on how to explain this better. Both of my friends mentioned Ele's Place, an organization in Michigan that assists children and teens in grieving a loved one. I got a contact name and number and immediately reached out. In less than 30 minutes, I had a response back. She put me in touch with the Program Director who I chatted with last Friday. The Program Director told me that they have worked with children and teens with Autism and that she had several resources she could send me. In less than six hours, I had those resources. She also gave me the words to use now with Dominic (she was very, very, very old; very, very, very sick or very, very, very injured; her heart stopped beating or her body stopped working). Dominic with his limited language needs words that are very concrete. A word not to use is "lose." The Program Director also told me that when there is a recent loss, it triggers past losses.  Given the recent loss of my husband's cousin earlier this year, that totally makes sense as to why Dominic was talking about Burcham Hills and my mom in the cemetery. A literal "lightbulb" went off! I like to pride myself on being able to handle anything that comes my way with Dominic. In this particular situation, I'm really glad that I asked for help. I just wish I hadn't waited so long!!!!!!!!!!!!!!!!!!!!!!

**Dominic with my mother-in-law

**Dominic with my mom.

Wednesday, August 21, 2019

Thank You to the Kroger Clerk That Made the Extra Effort

There was a time when the thought of taking Dominic to the grocery store would immediately make my stomach tense up, because I knew there would be the inevitable "meltdown" at the checkout. Thank goodness those days are behind us! With tenth grade starting this Monday, I decided to take Dominic with me today to the local Kroger. I called it a "field trip."  I let him carry my "list" and push the cart. We were in there quite a while loading up the cart with great deals!

The Kroger was surprisingly empty around the time we went and there was a lane open with no one ahead of us when it was time to check out. I recognized the clerk at the register. I love going to her lane because she is always happy and likes to chat (just like I do)! Dominic helped me put all the items on the conveyor belt and then we both walked towards the clerk to get ready to pay. I made the comment that we were loading up for school (lots of granola bars and Cheez-Its). She looked right at Dominic and said, "so, what grade are you going into?" When he didn't immediately answer, I turned to Dominic and said, "she asked you a question, can you answer her?" Dominic started getting kind of flustered and said, "no, it's Saturday morning." That has become his thing to say when he doesn't want to and/or doesn't know how to answer a question. It's a line from an old episode of Barney. "Scripting" is Dominic's fall back mechanism when he isn't sure of how to respond. The clerk then asked Dominic another question and again he said, "no, it's Saturday morning." I then said, "I'm sorry, he has Autism." She looked right at me, smiled and said something along the lines of, "yes, I know, I wanted to ask him those questions." This awesome gal was making the extra effort to have an interaction with Dominic. She didn't have to talk to Dominic, she wanted to talk to him. Wow, just wow. For once in my life, I was speechless! That doesn't happen very often!! Thanks so much to the Kroger clerk, you didn't just make my day, you made my year!!!!!!!!!!!!!!

Sunday, August 18, 2019

"Realistic" Goals

Dominic starts tenth grade a week from this coming Monday. A handful of my friends have kids around the same age as Dominic who are taking (or have taken driver's education training) and are already practicing driving. While I am very happy for them, a part of me feels a little bummed out (and left out).  I remember very distinctly when Lauren was younger, secretly comparing her to other children her age. Things like, crawling, walking and saying their first words. When you are a parent of a "typically-developing" child, those three things come along pretty much "on track." It's a different ball of wax when they have differing needs. Before Dominic was diagnosed with Autism at 2 1/2, I knew something wasn't quite right, but I was so overwhelmed by everything else going on in my life at the time, that I was just happy to make it through each day. When he started school at age three and still in diapers, I wasn't too concerned. It was much easier just to send in diapers and wipes and not worry about the whole process of potty-training, it was just too overwhelming.  I was beyond frustrated AND disappointed, because we knew there was no physical reason why he wouldn't use the bathroom. We tried all kinds of things at home and I just resigned myself to the fact he would always wear diapers.  It wasn't until Dominic got a male teacher at school and we made it a "realistic" goal, that it started coming together.  It took a while, but by the time he was a little over age nine, we got him to consistently go.  At his Individualized Education Plan (IEP) meeting each October, we discuss goals and expectations for the coming school year. Dominic has had an IEP since he was three, he just turned 15 a few weeks ago. Where we live, he can be in the school system until he is 26.  I think it's always good to set goals, because it gives you something to work towards. I wonder if driving is a realistic goal. I have thought about it off and on all summer and put off doing any real serious research because I already knew the answer.  I guess you could say I was in a little bit of denial. Through just a bit of research I did on the Internet this morning,  I found a list of questions that were developed by Autism and driving safety researchers at the Children's Hospital of Philadelphia (CHOP) to see if Dominic met the criteria to drive:

1. Do you feel you/ your teen or young adult consistently demonstrates good judgment and maturity at school, around peers, and at home? 

2. Are you/ your teen receptive to constructive criticism and instruction? Do you/ your teen demonstrate knowledge of the rules of the road and other skills taught in driver education classes? If not, do you need specialized instruction or a driving assessment? 

3. Are you/ your teen agreeable to practicing driving with a skilled adult prior to driving independently? If so, is there an adult who is willing and able to serve in this important role?

4. Are there any medical or behavioral conditions (such as significant visual impairment) that may prevent you/your teen from driving safely?Are there medical interventions that may be needed to ensure safe driving behaviors, such as treatment with ADHD medication if your teen has symptoms of ADHD?

While Dominic meets the age criteria, he definitely doesn't meet the above criteria, so I guess learning to drive isn't a realistic goal. I have mentioned this before, that when Dominic first got the diagnosis of Autism, I spent two weeks "coming to terms about it." I thought then and I agree now, that you have to go through that process, before you are able to devote yourself 100% to your individual with disabilities. That time is different for everyone. Who am I to say that process that you go through is too long or too short? The important thing is that you DO come to terms with it. From time-to-time, the reality of Autism kind of smacks me in the face, like the possibility of driving. When it does, I just remember the wise words of Dominic's preschool teacher, "focus on what he can do, not on what he can't do!" A realistic goal for this summer was learning to do a handstand!!!!!

Tuesday, June 18, 2019

Why I Give My 14-year old Son with Autism an Allowance

Did you get an allowance growing up? If you are parenting a child or adult with Autism, do you give them an allowance? I truly didn't even think about giving Dominic an allowance until about a year or so ago when Dominic's private speech therapist suggested it. My first thought was, "will he understand the concept of "earning" money for chores?" Dominic still struggles with knowing how much money is worth and how much something costs, so getting an allowance was the perfect way for him to continue to learn. We kept a chart with the date, his "chore" and the amount given (we came up with $2.00). I also kept a clear mason jar on the kitchen counter and every time he did his "chore,"  he got $2.00 and he put it in the jar. That way, he could see the money as it accumulated. I also printed out a picture of the Lego kit that he was working for from the Target website and attached it to his allowance sheet. Dominic is very visual, so seeing the money in the jar and having his sheet where we kept track of the money was VERY helpful for him. Just a few days ago, he had enough money saved up to get the Lego kit from the Target. After his private speech therapy session yesterday, we drove over and found it on the shelf.

I let Dominic carry the Lego kit and his $30.00 that he earned up to the front of the store and we stood in line. When it was our turn, he put the Lego kit on the conveyer belt and handed the money to the cashier. I told the cashier that Dominic earned the money from getting an allowance. The cashier thought that was pretty cool. Can you tell Dominic was happy?!?!?! Take a guess what he did as soon as we got home?

Dominic watches three shows every evening, the NBC Nightly News with Lester HoltWheel of  Fortune and Jeopardy!. When it was time for me to turn on the television, around 6:30 p.m., I said, "Dominic, it's time for Lester Holt!" He shook his head no. I then said, "do you want to keep working on the Lego kit and then put on Wheel of Fortune at 7? His response was, "Yes!!" It takes something REALLY special for him to deviate from his nighttime television "viewing." Dominic learned SO much from earning his allowance. First, he had to learn to be VERY patient (it took six months to earn enough money to get the Lego kit). Second, he learned if you work hard, you get an allowance. Lastly, he learned that when you get an allowance, you can use that money to buy something you really want!!

Tuesday, April 9, 2019

What I Have Learned Since Being Diagnosed with Type 2 Diabetes

I knew it was just a matter of time before I would be diagnosed with Type 2 Diabetes. Since the passing of my mom almost a year ago, I had turned to my favorite thing to do when dealing with stress - EAT. There are those of us who don't eat when we are stressed and those that love to eat when we are stressed. You don't even have to be hungry to eat. You just want to eat and it's usually not a craving for a cucumber, you crave something sweet, like things with lots of sugar. You would think by now, at age 55, I would have figured out a better way!!! Anyways, I went and saw my primary care doctor back in January of this year. After taking a look at my lab "numbers" she said, "your triglyceride number is still high and it's been high for five years, what are we waiting for? I'm putting you on Metformin." I love my doctor, she is also kind of like a mental health therapist. She is the one that diagnosed me with Generalized Anxiety Disorder and put me on two medications which have made a HUGE difference in my life. I still have occasional anxiety attacks, but not nearly as much as I used to. My doctor never gets rude about my weight. She more gently "suggests" what I should do. We all make New Year's Resolutions, right? Mine was to avoid things with tons of sugar. I have watched my dad have numerous health issues from not controlling his Type 2 Diabetes. He had a massive stroke a handful of years ago, 100% caused by uncontrolled blood sugar. He has been hospitalized a few times because his blood sugar has been too high or too low. He has also had numerous problems with his eyes caused by the Diabetes. My brother and I both separately had a "heart-to-heart" talk with our father that we really wanted him to be around for a while and we encouraged him to eat healthier. I can now relate to what he goes through having Diabetes, so I bring it up about once or twice a week when I talk to him. A few symptoms I noticed in the years prior to being diagnosed, was extreme exhaustion; always thirsty and if I don't eat some kind of protein for breakfast, in the late morning, I started sweating and feeling like I was going to pass out (it's happened a few times in the Kroger while I was shopping). I had always chalked that up to the multitude of medications I take for my Anxiety and Congestive Heart Failure. I discovered after being on a vacation last week and getting lots of rest and drinking TONS of water, I came back refreshed with a lot more energy! I ate really healthy on our vacation (lots of fruit and veggies), did multiple laps in the pool, walked more than I have been, had a boiled egg for breakfast everyday and NO desserts. Diabetes is a very serious disease. I have a vision that has stuck with me for over 20 years. I went to a viewing of my great-uncle on my dad's side of the family. He had lost both of his legs to Diabetes. Whenever I even get a thought of wanting ice cream, cake or anything with tons of sugar, I just think of that. Maybe that's morbid, but I certainly don't want to loose any of my limbs. I have lots more I want to do with my life. I survived Malignant Melanoma Skin Cancer and live everyday with positivity. Coming face-to-face with my own mortality waiting those two weeks to see if my cancer had spread in March of 2017 was just about one of the most stressful things I have ever encountered in my entire life, because it was totally out of my control. I pride myself on always being in control.  Watching what I eat is in my control. My advice to others if that if you feel run-down, exhausted and always thirsty, ask your doctor to do some simple lab work. It may just save your life.

Tuesday, January 29, 2019

We Need to Start Doing Something

Who else besides me thought the suicide last week of a 10-year old young man named Seven in Kentucky was a tragedy? Seven was bullied repeatedly because of a bowel condition he had no control over. Unfortunately, this was not this young man's first time at being bullied. In August of last year, he was choked on the school bus until he passed out. I have said before that I was bullied in high school. I never reported it to the school, because I feared it would make the problem worse, plus I had to see these girls outside of school because we played sports together. This is my own opinion, but I think empathy begins at home. If we raise our children in an atmosphere where racial slurs and making fun of others different than ourselves is acceptable, then why wouldn't we expect our children to be that way outside of our home? Empathy, according to the Merriam-Webster Dictionary means, "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts and experience of another of either the past or present without having the feeling, thoughts and experience fully communicated in an objectively explicit manner."  The particular group of girls that bullied me in high school thought it was fun to see me cry. I've been out of high school almost 38 years and I still can't figure out why that brought them such satisfaction. Yes, even almost four decades later, I still think of it. I can't even begin to know how sad this young man was and what pain he must have been in to feel that suicide was the only option available. My heart breaks for his parents. Their son was in elementary school, a fifth grader. My husband and I have had more than one conversation about how fortunate we are that Dominic is not bullied for being "different." Truthfully, I don't think Dominic would even know if he was being bullied. I guess we can take some comfort in that. Children committing suicide because they are relentlessly bullied really needs to stop.  I saw the mom of Seven on television shortly after her son had taken his own life. I know I wouldn't be able to do that if it was one of my children. That woman was incredibly brave. I have had a hard time getting Seven's sweet face out of my mind, because it was such a senseless tragedy. He was just too young to have taken his own life. We need to start doing something. If you know someone struggling, there is help, it's not hopeless. Here is a link to the Suicide Prevention Lifeline

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!!!!!!

Why Tim Tebow's Night to Shine Prom is So Important for those with Disabilities

This past Friday night was the second time Dominic went to the Tim Tebow's Night to Shine Prom . For those of you that don't know ...