Wednesday, October 21, 2020

Doing the "Right" Thing



While this Pandemic in some ways has been good (like doing our daily walks), I have definitely noticed Dominic becoming more agitated at things that typically wouldn't have bothered him so much, pre-Pandemic. It has got to be SO hard to be a teenager with limited language and be in puberty. Everyone goes through puberty, whether you are typically-developing or not. When Lauren was a teenager, she would go to her room, shut the door and get some alone time. Dominic doesn't do that during the day. He only uses his room to sleep. We have worked really hard with the private speech therapist on how to manage his emotions. He used to go in our living room and hit the bay windows with the palms of his hands. Definitely not the best way to express how he is feeling. Slowly, he transitioned from hitting the wall to throwing a pillow on the ground. Last night, our evening was going well until he looked at his "schedule" from school. Dominic's teacher is awesome. She puts a daily schedule on-line for the entire week. It is very detailed with the times of all of his classes and the subjects. I print it out on Monday mornings and attach it to a clipboard. As he completes each class, we check it off. It also lists homework. Well, out of the blue, after we had eaten dinner, he picked up the clipboard, took a look at Tuesday's schedule and noticed that he hadn't done the homework. I told him we could do it the next day. He wanted me to cross it off, even though he hadn't done it yet. I told him doing that would be "cheating." Dominic didn't like that explanation too much and he ran over to one of the decorative posts in our family room and yanked it hard. I raised my voice and told him not to do that and to go to his room to cool off. He ran upstairs and immediately came back down. I told him that he could get his school computer back out and do it. He kept shaking his head and continued to tell me no. He then threw a pillow on the ground.  This side of Dominic is a side most people don't see. The hubby had been observing the ongoing interchange between Dominic and I and finally said, "why don't you just stop talking about it?" I told him that Dominic was the one that kept talking about it and that he wanted me to cross off the homework even though he hadn't done it. I guess that would have been the easiest thing to do, but honesty is one of those traits that I strongly believe in. Both Dominic and I were standing our "ground."  By this time, Dominic was REALLY frustrated. His face was red and he was doing a lot of grumbling. After another few minutes went by, he went over and took his computer out of the case and turned it on. I said, "do you want to do your homework now, so you can cross it off your schedule?" He told me he did.  As he completed each assignment, we crossed it off. After he finished, he logged the computer back off and put it back in the case. I think Dominic had mentally exhausted himself, so he went to bed early.  I felt that it was extremely important I didn't give in and let him think that type of behavior is okay, because it's not. It was mentally exhausting for me too (I was hoping he didn't have an Epileptic seizure, which are sometimes brought on by stress), but I am really glad I stood my "ground." I knew in the end that Dominic would do the right thing and he did!

Tuesday, September 8, 2020

Why It's Important for Dominic to "Pay it Forward"

About two years ago, Dominic's private speech therapist starting teaching him the process of when you do chores, you get an allowance. You then save up that money and buy something that you really want. In Dominic's case, it has been Legos.  If you have a child/adult that likes Legos, you know how expensive they are! Sometimes, it has taken Dominic three months to save up enough money (he gets $5.00/week).  About a month or so ago, I took a look around our house and I felt like we were living in a Lego factory. They were literally everywhere!! I couldn't walk anywhere in our family room without stepping on one. If you have ever stepped on a Lego piece with the arch of your foot, you know that doesn't feel too good! I knew that we needed to take a break for a while from buying them.  Dominic's private speech therapist gave us the option of taking part of his allowance to our local bank and have him deposit it into his bank account, but I want Dominic to get the full experience of filling out the deposit slip and waiting his turn in line to see the bank teller.  At our bank, you have to make an appointment to go into the lobby. Dominic could make his deposit at the drive-thru, but it isn't quite the same as doing it in person. A few weeks ago on a Saturday, I started the discussion with Dominic about how we are lucky to have food on the table and a roof over our heads. I explained to him that not everyone has that.  I then asked him if he would be willing to donate part of his allowance once a month to church. Without hesitation, he said yes. I had him grab the glass jar that we keep his money in that he has earned from his allowance. I told him that he could decide anywhere from $5.00 to $15.00 to give to church. He picked $15.00. Dominic keeps a ledger in a notebook of what date he gets his allowance and the amount, so he always has a running "tally" of how much he has. We subtracted the $15.00 from the grand total.  I then found an envelope, wrote a note, tucked it into the envelope and put the $15.00 in it.  As many are with Autism, Dominic is very visual. He watched every single part of the process. We typically go to the 5:00 p.m. Mass at our church. I made sure I had the envelope in my purse and when we got inside, I had him put the envelope in the offering box mounted on the wall.


 Dominic has watched me for years filling out a check and putting it in an envelope, taking it to church and putting it in the collection basket.   According to Kiplinger.com, there are three ways to instill enduring financial values in children, "teach them how to save, teach them how to spend and them how to give."  Dominic turned 16 at the end of July. He has his Individualized Education Program (IEP) meeting a little less than two weeks from today. At last year's IEP, we started the discussion of Dominic working on his vocational skills with the ultimate goal of getting a job, so I know we will be resuming that conversation this year. The skills that Dominic has learned from getting an allowance will apply to when he starts earning his own money at a job. The hubby and I will make sure that he continues to donate once a month to church. We feel it is extremely important for Dominic to "pay it forward." Dominic has been working very hard since the end of July baking and cooking different foods. This afternoon, it was Apple Crumb Muffins. Every time I mention to my husband that what he is eating is something Dominic made, he says, "he has a future in the restaurant industry!" The muffins were the eighth thing Dominic has made since I started keeping a "journal" of what he has made (another great idea from his private speech therapist). I think they look pretty yummy, don't you? If you are wondering why Dominic's grin was so wide, it was because I told him he could have TWO muffins!!!!




Saturday, August 22, 2020

An "Anniversary" Worth Celebrating

Yesterday was a HUGE milestone. Do you want to know what it was?!?!?! Well, I will tell you! It was five years almost to the day that Dominic has been going to his barber, Vince. Dominic was 11 when he went to Vince for the first time.



He just turned 16 in July. Vince has watched Dominic grow from a boy into a man.



In case you were wondering, both Vince and Dominic had on their respective masks during the haircut. They removed it briefly for the picture! So, for those of you without sensory sensitivities, getting a haircut can be challenging because of the bright lights; the noise of the hairdryers, people and the clippers; having someone touching their head and lastly, the smell of chemicals. For most of us, those things wouldn't bother us or we block it out. For those with Autism or sensory sensitivities, it can be very difficult.  Before Michigan lifted the restrictions for getting a haircut, I asked Dominic a bunch of times if he wanted me to cut his hair. It was always a resounding NO.  I think he remembers all the years I cut his hair where it literally looked like I put a bowl on his head and cut.  It was never a thought in my head of going to a different barbershop after the restrictions were lifted. When my husband and Dominic walk through the doors of the barbershop they are treated like family. Throughout these five years, Dominic has formed a trust with Vince.  That is so incredibly important for someone on the Autism Spectrum. Dominic is very intuitive and he knows if someone feels uncomfortable around him. From day one, Vince has treated Dominic with respect, patience and compassion. Vince carries on a conversation with Dominic and even if Dominic doesn't respond back, Vince just keeps right on clipping. If you find a barber that is as wonderful as Vince, consider yourself very lucky!!!!!!!!!!!!!!!! We sure do!!!

Saturday, August 8, 2020

Going Outside the "Comfort Zone"

Before this Pandemic took over, Dominic was pretty "set" in his ways. Trying anything new and out of his "comfort zone" was not anything at all on his radar screen. As are many on the Autism Spectrum, changes in Dominic's routine are not always easily accepted. Since we are living in a different world now, I have used this time with Dominic to not only work on his social skills, but to also try new things.  When the opportunity to sign Dominic up for a "virtual" music camp in June arose, I really had no expectations that he would be engaged and participate. We had tried this particular camp in-person and it was too overwhelming for him and I never signed him up for it again. Much to my surprise, he LOVED it!! The camp had just the right mix of breaks and participation. Based on that positive reaction, I signed him up for another camp similar to the one he did in June. The "Showcase" is this coming Wednesday night and Dominic will be singing, "Happy" by Pharrell Williams.  Dominic has been in the choir at school for several years, but there has been more than one time he hasn't sung, like not at all. I am hopeful when he does go back to school in-person, he will have gained the confidence to sing every time he is on stage! Since just about every activity has moved on-line, when I saw on Facebook that the Food Network along with some other sponsors were offering free cooking classes, I signed Dominic up for three. He made Chicken Barbeque "Pizza," with Rachael Ray; Chicken Parm with Angel Hair Pasta with Andrew Zimmern and yesterday, he decorated a cake with Buddy Valastro


Typically, when we decorate a cake, I only let Dominic do the "sprinkles." I have learned these past several months, to loosen the tight control I have on Dominic. That grip was real tight at the beginning of the Pandemic because he had three seizures within the first month. Since he has been seizure free for over three months, little-by-little, I am making progress and loosening that tight control. A huge lesson that I have learned having Dominic with me during this time of the Pandemic is that he has to learn to adapt to this world, the world isn't going to adapt for him. Speaking of going outside Dominic's "comfort zone," I asked an artist friend of mine if he would be willing to give Dominic private art lessons. Those start this coming Wednesday.  I will keep you updated!!!!

Tuesday, July 7, 2020

A Sibling's Point of View

There was a news story a while back that you may have missed and I feel that it is still important to talk about. It was about a very popular YouTuber named Myka Stauffer.  I had never heard of her until my daughter, Lauren, forwarded me an article about her. Myka Stauffer and her husband had adopted a son from China, who was named Huxley. After finding out he had Autism and other disabilities, they decided that he should be placed with a different family. The Stauffer's already have four biological children. Evidently, some of Myka Stauffer's followers were asking what happened to Huxley since he wasn't in any of the videos she was posting. About a month ago, Myka Stauffer and her husband made a video explaining where Huxley had went. There was a lot of negative fall out from the video including tons of judgment. Everyone seemed to have an opinion. Very few supported her decision to return him.  What I learned from one of my best friends is that you shouldn't judge others unless you are walking in their shoes. Many were concerned about Huxley and the effects of all of this on him. I read a lot of the comments and I don't think I saw any about how having an adopted brother and then not having him in the family would affect the four biological children. That was Lauren's number one concern about the whole situation, given that she has a younger brother with Autism, named Dominic. As a mom, I could only see it from my perspective. Besides having an older sister (Lauren), Dominic also has a stepbrother who is 36 and married.  My stepson has never lived with us full time and when we moved to Michigan in 2001, he was a senior in high school, so he stayed back with his mom in Maryland. We talk to my stepson and his wife each week, so Dominic is able to stay connected to them. Lauren was eight years old when Dominic was born. When the Myka Stauffer story came out, Lauren was like, "what about the other kids?" "They will be wondering where their brother went." During the time of the Pandemic, Lauren stayed with us for close to three months. Dominic started reading the "Magic Tree House" books to her. When she went back to her apartment, I was trying to figure out how the closeness could continue. That's where Skype comes in!!


Even though Lauren has a full-time job, she makes time in her day for Dominic to read to her.  He reads a chapter to her at a time and they are now on their fourth book!!!! Lauren has always thought of Dominic being her brother first and having Autism second. Isn't the way it's supposed to be?


Saturday, June 6, 2020

A Trip to the Post Office


So, we did it. This afternoon, for the first time since the Pandemic started, I took Dominic to a public place, our local post office. We needed to mail something by Priority Mail as well as buy some stamps. Before we went, I had put it on his daily schedule and showed him the Social Story for using a face mask. The only other time we had tried to get him to wear a mask was a handful of weeks back and he took it off after 30 seconds, so I was VERY apprehensive about him keeping it on the entire time we were at the post office.  Before deciding to take him, I talked about it all morning with the hubby and Lauren. Even though I am on two medications for my Generalized Anxiety Disorder, I still, once in a great while, get that old familiar feeling in the pit of my stomach, that unpleasant pre-worrying feeling. Anyways, I asked Dominic if he wanted to take the Social Story with us in the car on our way to the post office and he said no. Once we pulled into the parking lot, I put on my mask and told Dominic that he had to put his on and keep it on the entire time we were inside the post office. I had to help him put it on, but once it was on, he didn't try and take it off.  The hardest thing for Dominic to do with the mask on was trying to figure out how to pick his nose (no, I am not kidding)!! LOL. Once inside the building, I had to grab a Priority Mail label and start filling it out. I fished around in my purse and I couldn't find my pen. I knew I had one in my purse, because I checked before we left our house. I had literally worked myself into such a bundle of nerves, that once I calmed myself down, I found it. Luckily, we didn't have to wait at all. During this whole time, Dominic was cool as a cucumber and not once did he try and take the mask off while we were conducting our business at the counter. The transaction with the postal clerk took less than five minutes and then we left the building. I told Dominic that once we were back outside, he could take off the mask. He handled the whole outing like a pro. I, on the other hand, was stressed out the entire time. Dominic having three seizures at the beginning of this Pandemic, really messed with my head. I have been TERRIFIED of taking him to any public place. I knew at some point, he had to get out.  Believe me, this isn't the first time my anxiety has prevented Dominic from doing something. I am continually working on it. All I can do is just keep going forward and giving Dominic that independence he deserves!! Wish me luck!! 

Thursday, May 28, 2020

Random Acts of Kindness During this Quarantine

As we continue through navigating our new "normal," one thing in particular has stood out to me as far as parenting Dominic goes. No one can make it alone through this. I'm sure you have heard the saying, "it takes a village to raise a child."  Never has that been more true than doing these unusual times we are currently living in. After I had Lauren, I had two miscarriages. When I got pregnant with Dominic, I was worried every single day that I would have another miscarriage. I think I knew deep down from the time he was born that something wasn't quite right. When he was diagnosed with Autism at age 2 1/2, it surprised me, but not really. As the diagnoses started stacking up, ADHD and Generalized Anxiety Disorder at age 3 and then Complex Partial Epilepsy five years ago, I knew that we needed additional support. Say what you will about Facebook (I know not everyone likes it), but for those parenting children and adults with disabilities (such as our family) it's very much a "lifeline." Isolation was HUGE for our family in those early days of Dominic's diagnosis of Autism. During that time, our daughter was having significant health issues and we were taking care of my husband's parents back in Cleveland. It literally was all I could do to function each day. I guess you could say, "I was going through the motions." When everything settled down a bit, I then starting looking for my "village." It's not like you can go stand on your rooftop and say, "hey, I need support here!" I wish it was that easy, but it isn't. When I started posting on Facebook years ago about important milestones Dominic reached, my on-line "village" would comment and/or like my post. During this Quarantine, Dominic (and our family) have been the recipients of many "random acts of kindness." At the beginning of the Quarantine, a neighbor down the street gave Dominic a puzzle because he knows from my Facebook posts that Dominic loves puzzles.  Five days ago, another neighbor (who just happens to be Dominic's old music teacher) brought down five Magic Tree House books that her daughter picked out special to let him borrow because she saw on my Facebook page that Dominic was reading them:




This past Monday, I met up with one of my closest and dearest friends in a high school parking lot (so we could social distance) and she gave me six puzzles, three of which Dominic has already done and yesterday afternoon, Dominic's special friend, Madelyn brought over four puzzles.



Wow, I'll tell you, I am overwhelmed and humbled by the generosity of my "village!" Thank you from the bottom of my heart, and please know this, it is very much appreciated!!!!!!!!!!!!!!!!!!!!!

Tuesday, May 12, 2020

How a Daily Walk Has Helped Me Through this Quarantine as Someone with Generalized Anxiety Disorder


I used to make a daily walk a priority. As I had gotten more and more busy over these past few years, I would find every excuse I could to not walk. I'm too tired, I'm too out of shape, I have a heart condition, etc. My husband tried to encourage me, but I ended up taking offense at his not so "gentle" suggestions. He stopped after a while.  Up until the past four weeks of this Quarantine, I would come to the end of the day and realize I hadn't set foot outside of our house at all! Not even to get the mail from our mailbox.  Yikes.  Lauren has been temporarily living with us and she kept asking me to go for a walk. I kept telling her no, until I decided that for my mental health, I really needed to get out of the house at a minimum, once a day. I am so incredibly thankful to her and her persistence, because we are now on week 4 of our family "walks!!" The first week or two, I had to come home and lie down after our walk because I was exhausted.  I have slowly built my stamina up and don't need to do that so much anymore. Dominic's private speech therapist has built his speech therapy into our walks. He has to find three things he sees on our walks and write them down in a spiral notebook.  During his weekly Zoom sessions with her on Saturday mornings, he is able to have a conversation with her about what he saw on our daily walks. Pretty cool, huh? For consistency and routine purposes, we aim to go at the same time, 11:30 a.m. Lauren asked me recently if I was going to continue my walks even after the Quarantine is over. I told her YES!!!

Friday, May 8, 2020

It's a "Group" Effort


Since going to the local barbershop is still not allowed where we live, it fell upon us to figure out the best way to shave Dominic's beard and mustache. Typically, Dominic goes to our local barbershop to get his haircut and his barber (Vince) also takes about 30 seconds to shave the beard and mustache. This August, it will be five years that Dominic has been going to Vince. That in itself is a huge milestone as anyone with a child/adult with sensory sensitivities knows. Anyways, earlier in the week my hubby, Lauren and I had all noticed that Dominic's facial hair definitely needed some assistance. I mentioned to Lauren that I needed to find a "social story" about getting a shave. Before I had a chance to find one, she took it upon herself to find one and print it out, it had both an electric shaver and shaving cream/razor stories!



That meant so much to me, because she didn't have to do that, she wanted to!  I showed the social story to Dominic and said with tons of enthusiasm, "we are going to shave!" His response was a resounding "no." I just kind of casually left the social story out on the kitchen table and more than once, I caught him taking a look at it. Since he showed some level of interest, the hubby and I discussed it last night and decided that today would be the day!! I wasn't sure what time the big shaving session would be. After we did a family walk (a new Quarantine activity) and the frozen pizza in the oven for lunch was almost done, I heard my husband say something like, "Daddy is going to shave and then it's going to be your turn!" My husband switches up his shaving "routine." He either uses his dad's electric shaver, which I am guessing is at least 50 years old or he uses shaving cream and a razor. When I rounded the corner to the bathroom, my husband was making his best effort to shave Dominic's facial hair. It didn't appear to be working because either Dominic has too much facial hair or the electric razor just couldn't handle it. The noise was really starting to bother Dominic too and he put on his headphones. When my husband went upstairs to get the shaving cream and a razor, I told Dominic what were going to try next. My husband put some shaving cream on Dominic's face and he actually laughed!! The hubby also got some shaving cream on Dominic's lips which I wiped off. It took longer with the shaving cream and razor, but Dominic handled it like a pro!!! Lauren, the hubby and I kept telling Dominic how great he looked and Lauren made the comment that it was a "group" effort to get Dominic shaved. A few hours after the shaving session, I asked Dominic what he preferred, the electric shaver or the shaving cream and razor combo. He said the shaving cream/razor combo. I was kind of surprised because Vince uses the electric razor. I asked Dominic why he preferred the shaving cream and the razor and he said it was because the electric razor is "too loud." I don't know if we would have had the same fabulous results if it weren't for all of us coming together as a group to achieve the ultimate goal!

Wednesday, April 22, 2020

Investing the Time Now to Prepare for the Future

When the Quarantine first started, I spent the first week trying to replicate what Dominic did at school on a daily basis and unfortunately, he had a seizure that Friday, March 20. The next week, I let him do whatever he wanted because I had a huge case of mom “guilt” that I had caused it. Secretly, in the back of my mind, I was hoping the Quarantine would last two weeks and things could go back to the way they were. As we all know, that hasn’t happened yet (at least here in Michigan). The third week, I started using a whiteboard for Dominic’s detailed “schedule” as well as having him write his daily chores in a spiral notebook. Dominic has had a handful of chores for well over a year now (a fabulous idea from his private speech therapist), but what I began to notice, is that I was starting to give him additional chores, many of them life skills that he will be able to carry with him throughout his life, whether he always lives with us or not.  Some of his new chores include making his own lunch (he has been making his own breakfast for several years) and bringing in the trashcan from the curb after the garbage guys come through. I gladly let him take that one over from me! Dominic has been baking along side me from the time he was in diapers. Before the Quarantine, I was so incredibly busy, that baking had really taken a “backseat.” I was hardly doing ANY baking. During this time of togetherness, I have started it up again! Dominic used to just put the ingredients in a bowl and leave. I have “expanded” his role to reading the recipe, as well as finding and measuring the ingredients. A few weeks ago, he spilled a bunch of flour and got upset. 




He is what you would call a “perfectionist.” I had to reassure him several times it was okay. So far, we have made my mother-in-law’s Sour Cream Kuchen four times, as well as Brownie Pie and yesterday, Sour Cream Biscotti! 




My great-grandfather was a baker in Missouri. I have LOVED baking since I got my first Easy Bake Oven. I think Dominic has inherited his great-great grandfather’s passion for baking. Dominic will be 16 in July. He is on the life skills “track” at school, not the academic “track.” Employment for those with disabilities is hard to find. I don’t know the exact statistic, but I do know the number is quite low.  I see SO many stories on social media about those with disabilities working in coffee shops, restaurants, etc.  Dominic loves repetition and organization. Throughout my volunteering with the disability community, I have met the most remarkable woman who I have the utmost respect for. She took over as the President and CEO of the Greater Lansing Convention and Visitors Bureau right around the time the Quarantine started. I have watched her handle this crisis like a pro. It makes me even respect her more (if that's possible). When I sent her a draft of this blog post her words to me were, "with Dominic's winning smile, he's perfect for the hospitality industry!" Thank you Julie for having such a positive influence on Dominic!


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.    

Doing the "Right" Thing

While this Pandemic in some ways has been good (like doing our daily walks), I have definitely noticed Dominic becoming more agitated at thi...