I have mentioned before that when we first received Dominic's diagnosis of Autism at age 2 1/2 , my first thought was him as an adult sorting paperclips into boxes. I thought he would never talk. I knew nothing at all about Autism. I did grow up with a neighbor named Tommy who had intellectual disabilities and he would visit our home frequently. This was the 1970's when those with disabilities were separated in school and many parents were told to institutionalize their children. Looking back, Tommy's parents went against that thinking. They let him walk around the neighborhood unsupervised. I never asked Tommy if he had Autism, we accepted him the way he was. Speaking of acceptance, it took me about two weeks to come to terms with Dominic's diagnosis of Autism. In my own opinion, I think that is very important to do because you really can't move forward until you have done that. After the diagnosis of Autism, Dominic subsequently received diagnoses of ADHD, Generalized Anxiety Disorder and Complex Partial Epilepsy. In a lot of ways, when Dominic received that diagnosis of Autism, I was actually relieved. I found it much more stressful before we got the diagnosis. We knew something wasn't right, but didn't know what it was. Dominic turned 16 at the end of July and in a little over a year and half and he will be an adult. Now that I have been on this Autism "journey" with Dominic for almost 14 years, I can say with complete transparency that he has surpassed many of the expectations that I had for him!! Dominic's speech is delayed and most likely always will be. When Dominic was able to say two or three word sentences, I felt like jumping up and down!! This past Friday, Lauren asked Dominic what he wanted for Christmas. He responded back with, "Legos and puzzles." This was the very first time that he ever told us that!! Woohoo!!!! Given that he is almost 16 1/2 we have been waiting a LONG time to hear that!!!! When you have a child/adult with learning differences and speech delays, when they are able to tell you spontaneously, unscripted and unprompted what they want, you want to shout it from the rooftops! I belong to several Facebook pages that have to do with Autism. Earlier this week, on one of my favorite Facebook pages, I saw a post about a 4-year old boy that saw one of his favorite Disney characters and spoke for the first time. Another parent saw that post and said, "thanks for giving me hope!' Since I was so excited that Dominic had told us when he wanted for Christmas, I posted it on their Facebook page. A different mom wrote back to my post saying that she would give anything to hear what Dominic said to us and that her son is 16 as well. I wrote back to that mom and told her I was sending her a "virtual" hug and to never give up hope!!!!
Friday, December 4, 2020
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"
Saturday, August 22, 2020
An "Anniversary" Worth Celebrating
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"
Tuesday, July 7, 2020
A Sibling's Point of View
Saturday, June 6, 2020
A Trip to the Post Office
Thursday, May 28, 2020
Random Acts of Kindness During this Quarantine
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
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.
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.
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...
-
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...
-
Last Thursday morning, my husband, Dominic and I went to our county's Probate Court and had Dominic's Guardianship Hearing. My husba...