Explaining "Loss" to Dominic

I first started writing this blog back in July 2011, because the first six months of 2011 were incredibly challenging (lots of personal losses). I needed a way to get out all of the emotions I had been holding in. My husband calls me the "glue that holds our family together." Well, that's sweet, but sometimes glue dries up and starts to "crack" a bit! I have never considered myself a writer (I have a degree in Business). Anyways, flash forward to April 28 of this year. We had just dropped off my stepson and his wife at their hotel and were driving home from Lauren's college graduation. I was sitting in the back seat and started getting text messages from my brother that my mom was going to the hospital for an infection. The next day she was eating applesauce and was in relatively good spirits. I was totally caught off-guard the next day (Monday) when my brother called me to tell me my mom was gravely ill. My first extinct was to hop on a plane and fly back there. I knew my family would want to be with me, so I made the decision to wait until Tuesday. Unfortunately, she passed away as we were driving back to Maryland. My siblings and our families were able to put together a very nice service on short notice. I was extremely concerned that Dominic would be so out of his routine that he would start having seizures. He has had nine, the most recent one in March. I made sure Dominic had his "travel" schedule, which is a spiral notebook that is only used for when we travel. I also packed up his other favorite items. He knew my mom who he called, "Grandma Martha," pretty well. Funeral homes are not exactly the best place to have a child, much less a child with Autism, hanging out for hours. I let him go to the very back of the room and play with his favorite items. I asked him three times while we were there if he wanted to go up and see my mom. He told me no and I didn't push the issue. Dominic was very respectful and quiet during the whole day and it was a LONG day. When we got back home to Michigan that Sunday, we settled back into our routines. I like to think of Dominic's brain like a file cabinet. He sees and hears everything that is going on around him, even though it may not seem like it. He "files" things away for later use. When my mother-in-law passed away at the beginning of 2011, we struggled as to how to "explain" that loss to him. We ended up telling him that she was "broken" and we couldn't "fix" her, so she went up to heaven. In the weeks since we have been home since my mom's passing, I have asked him if he knows where my mom is. He has said, "no," which means he doesn't want to talk about it. Last Monday, I said, "do you know what today is?" I continued to say, "it's Memorial Day, it's a day to remember those who have passed away in wars." He then said, "up in Heaven." Just in the past week, Dominic has been voluntarily telling me that "Grandma Martha" is "up in Heaven." It has taken about a month, but I think he is finally making the "connection."

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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