Why I Celebrate Every Seizure Free Day

How many of you have ever seen someone, adult or child, have a grand mal seizure? It is pretty darn horrifying. Yep, that is about the best word I have to describe it. Never in a million years did I ever think Dominic would have Epilepsy. I thought I had a pretty good "handle," on the Autism thing until the grand mal seizure Dominic had in June of 2015. I was hoping and praying that he would just have the one and that would be it. Little did I know, there would be four more seizures (not grand mal), the most recent at the end of June of 2016. Do I ever fully relax when Dominic is at school, even though they have an emergency plan for him? Nope. Do I let him stay with a babysitter? Nope. I am in constant "high alert," status when he is not with me. It's really, really hard not to be, believe me I've tried. The only thing I knew about Epilepsy prior to Dominic's first seizure was that you have to put the person on their side. I had presence of mind that day in June of 2015 to at least do that. I wish I could go back and thank the 911 operator I talked to. I was so stressed out because a few times I didn't think Dominic was breathing. She told me to count in between his breaths until the ambulance got to our house. The paramedics and the EMT's were so great with him and with the hubby and I. I admire them, I know I couldn't do that job! I had no clue that many times, Epilepsy and Autism go together. Who knew? I wonder into the future, will he be able to get his Driver's License? I have asked Dominic and he says he wants to learn how to drive. Do I tell him no? Is it possible? Will having Epilepsy prevent that? He is on a pretty strong dose of anti-seizure medication. This morning, in the rush to get both Dominic and the hubby out the door, I forgot to give Dominic his anti-seizure medication. Ugh. That is like the second or third time I have done that since this new school year started! Each time, I toy with the idea of just letting him skip it, but my anxiety won't let that happen. I sent a message to Dominic's teacher as soon as I realized that I hadn't given him the medication, then I drove down to the school and met Dominic and his teacher near the office. Luckily, he doesn't get stressed out when he sees me (he actually gave me a kiss), he just washes the medication down with a cup of water and says, "bye Mommy!" This past Wednesday was 100 days since Dominic's fifth seizure.

We go for a check up with his pediatric neurologist in about two weeks. I am so grateful that he is on a medication that stops the seizures. I feel for those parents that are still searching for a solution. I can't tell them I understand, because I can't even imagine the stress they are under. I sometimes wonder if I have post-traumatic stress disorder. That day in June of 2015 was like a 100 on a scale of 1-10. The only time that comes close to that level of stress was back in January of 2011, when I had to rush Lauren to the hospital with severe abdominal pain and my mother-in-law passed away in hospice care on the same day. I'm already on two anti-anxiety medications. Those medications keep me balanced and I'm glad that I am on them. I have had more than one person tell me their child "outgrew," their seizures, I'm hoping that Dominic will one day be in that category. Until then, I will continue to celebrate every seizure free day.

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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