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.

Those "Steps" to Independence Can Be Hard

We are heading towards 600 orders for Dominic's business. Since our long-term goal for Baked Goods By Dominic is having a "brick-and-mortar" and hire those with disabilities, it is essential and imperative that I continue to teach him all parts of the business. Since I prompted Dominic for so many years for speech, he has become "prompt dependent." What that essentially means is that he will look at me for a prompt, like, "what do you do next?" I do that one a lot. Dominic has been going to a private speech therapist for over ten years and she reminds me often that Dominic usually will know the answer, if I am patient and wait for him. That has been a very hard habit to break! Dominic has an incredible memory, so I put it to the test this morning. I didn't write out the steps, I wanted to see how much he could do completely on his own. We have a customer picking up his order today, but the only thing that had been done is putting the cookies into t...

Why We Pursued Guardianship of our Son with Autism

Last Thursday morning, my husband, Dominic and I went to our county's Probate Court and had Dominic's Guardianship Hearing. My husband and I are Co-Guardians, and we were granted "Partial Guardianship," which means Dominic can make some of his own decisions (future educational and vocational placement options, what to wear and how he wants to spend his free time), but my husband and I will make his medical, health care, legal, contractual and major financial decisions. The subject of Guardianship in the disability "world" has been and continues to be a controversial and divisive topic. I was a panelist for an Autism Conference this past summer and presented on what it's like to have a child with Autism. Towards the end of my presentation, I mentioned that Dominic had just turned 18 and that we were going through the Guardianship process. When the attendees could ask questions, the first person that went up to the microphone started telling me that I was...

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 five years. Since his current one expires in February of 2024 and he is now 19, we had to apply for an Adult Passport. I don't know why my husband and I picked Dominic's first day of school and Michigan State University moving in their students, but the appointment was yesterady at 3 p.m. We had gathered all of the documents needed and then went into a special room in the East Lansing Post Office just for Passports. The three of us sat down and the clerk asked Dominic his age. He said, "19." Since we were also getting his picture taken for the Passport, he went into a separate room, where she took a picture of him and then let him look at it to make sure he liked it (it will be his picture for the next 10 years)! He said he did, so he sat back down with us. The clerk filled out a bit more of the paperwork and then she let Dominic s...

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