Family ~ Cooking ~ Inspiration ~ Love ~ Life
Wednesday, October 12, 2022
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 wasn't giving Dominic enough of a say in his future. Let's just say she was very angry and combative. I was caught so off-guard, that I really didn't know how to respond. Later on, after the Autism Conference was over, and I had time to think about that interaction, this woman doesn't know Dominic. She doesn't know what he is and isn't capable of. She was making a generalization, based on probably her own experiences. Deciding which route, you want to go with your individual with a disability, when they turn 18, is a very personal decision. Many, many factors go into deciding what is right for your adult with disabilities. In Michigan, there are two types of "Guardianship for an Adult with a Developmental Disability," one is "Partial" and the other is "Plenary or Full." I had heard that if the Judge grants "Full Guardianship," it is basically impossible to reverse. Part of the process before the Hearing was that a behavioral psychologist from Community Mental Health had to administer some tests on Dominic, which we did about three weeks before his Hearing. We were able to see a copy of her report before the Hearing which I appreciated. The day after his Hearing, I was talking to some business colleagues of mine, and I was telling them that Dominic's Hearing was the day before. One of my colleagues knew about Guardianship, because she has a brother with a disability. The other colleague asked me what it was. I told her that seeking Guardianship of an adult with a Developmental Disability is a way to protect them from possibly being taken advantage of. In the eyes of the law, when Dominic turned 18, he is responsible for making his own decisions. Unfortunately, there are people out there that are appointed a Guardian or Co-Guardian of an adult with Developmental Disabilities that don't have the persons best interests in mind. I have thought from time-to-time about going to law school and becoming a lawyer for those with disabilities based on all the different experiences I have had. Who knows? Maybe one day I may just do that!!!
Sunday, November 28, 2021
An Important Anniversary
When Dominic was first diagnosed with Autism at 2 1/2, I truly had no idea what would happen when he turned 18 (which is now just 8 short months away). Would he go to college? would he live in a residential facility? would he have a job? It is so hard to predict the future for any of your children, but especially for those with higher support needs. Today, marks the one-year Anniversary of Dominic's baking business, "Baked Goods By Dominic." I have spent the past few days thinking about that. I read recently that just 32% of adults with Autism have paying jobs. That means there are 68% that are not employed. That is a HUGE number. I have told more than one person since Dominic's business started, it's not like someone was going to knock on our front door when Dominic turns 18 and say, "hey, I'm here to offer Dominic a job!" We had to create an opportunity for him. Living in Michigan, he can be in the school district until he is 26. We had a choice to make this year. He could wait until he "aged" out of the school system or have him "graduate" with his typically-developing peers in June of 2022. My husband and I discussed it and decided that we wanted him to graduate with his typically-developing peers in June. Dominic first started special education services in the school system when he was three. Putting my "baby" on the school bus that first day was very difficult.
To my knowledge, he has never been bullied. I like to say that he travels around in his protective "bubble" at school. When we go places in town, we almost always run into someone that says, "hey Dominic!" He has had amazing teachers, parapros, therapists, etc. and I am personal friends with many of them. Each and every one of them has had a part in getting Dominic to the point he is now. In the Fall of 2021, he started working at a local business doing custodial work. He is able to tell the hubby and I every day when he hops off the bus what he did. It has been amazing to watch how much confidence he has in himself when he can tell us. When Dominic turns 18, we will seek full guardianship of him. As much as we had hoped he could make his own decisions, we also have to be realistic. My husband and I have to do what is in his best interests. Dominic's business just hit 150 orders. When we first started out a year ago, it reminded me of when Dominic was first diagnosed with Autism at 2 1/2, I had no idea what the future would hold for the business. When my dad unexpectedly passed away three weeks after the business started, it was devastating, even more so because we couldn't travel from Michigan to Maryland for the funeral because of COVID. In early 2021, I started a Facebook page for Dominic's business. He now has a huge on-line "community" that supports him and our family 100%. I use the Facebook page to talk not only about his business, but what it's like to raise a child with differing needs. It's like what I use this blog for! I have already had parents reach out to me and want their children to work for Dominic. I have parents who have children newly diagnosed with Autism tell me that Dominic's business is an "inspiration" to them and gives them hope for their children. It makes my heart so full to hear that! As for the business, it is no longer a matter of "if" we will have a brick-and-mortar business, but "when!"
Saturday, August 21, 2021
Focus on the Positive
Monday, June 7, 2021
It's Time to Leave the "Protective Bubble"
This Friday is Dominic's last day of 11th grade. He did part of 10th grade and all of 11th grade "virtually." While "virtual learning" has been good in some ways, there definitely has been one huge disadvantage. He has had seven seizures since March of 2020. All of Dominic's seizures, except the very first one, have been caused by anxiety/stress/change of routine. Each time he has had a seizure, I have had to call his Pediatric Neurologist and we discuss his medications. At Dominic's most recent in-person appointment, the Pediatric Neurologist basically said Dominic was at the top limits on his two current anti-seizure medications and she was very concerned about adding a third, especially since he was continuing to have seizures. After some discussion, since Dominic also has Generalized Anxiety Disorder, we decided to treat the anxiety with a low dose of the generic version of Zoloft. Thank goodness he hasn't had any side effects and he has had only one very small seizure since he's been on the generic version of Zoloft, so I would say it's a success! We did have the option of sending Dominic back in person a few months ago, but given he had not gotten the COVID-19 Vaccine yet, the hubby and I decided it would be better and less disruptive to let him continue the remainder of 11th grade "virtually." During this Pandemic, we added another day of private speech therapy, private drawing classes with an awesome artist
and started a Michigan Cottage Food Business, Baked Goods By Dominic.
Tuesday, April 13, 2021
Living with Congestive Heart Failure
Monday, March 1, 2021
Why The Pandemic Has Been the Best Time to Start a Business for My Son with Autism
This month marks the one-year "anniversary" of Dominic being home full-time from school. When the Pandemic started, I guess I was VERY optimistic and thought it would only last a few weeks. Little did I know, that almost a year later, the Pandemic would still be raging on. It has been of a bit of a "learning curve" having Dominic here and my husband working from home (the hubby likes to call it a "preview" of what it will be like when he retires)!! We have worked out a good system, so one of us is always home with Dominic. He can't be left alone because of his Complex Partial Epilepsy. He has had six seizures since the Pandemic started, the most recent one was the beginning of January. Since we have had LOTS of extra time in our schedule, in June of 2020, we went from once-a-week private speech therapy to twice-a-week. It has been a pretty seamless transition from in-person to "virtual" learning with her. His private speech therapist has moved away from worksheets and started to concentrate heavily on "work/life skills." It was her suggestion to start to have Dominic bake for her and then she would pay him for his finished baked product. We really wanted him to make that connection. I started to wonder if we could bake for other people and make it into a "business." I started to comb the Internet for information and found that Michigan has something called a "Cottage Food Law." I did some research and then sat on the information for a while. It was several pages of Rules and Regulations (very overwhelming and intimidating at first). I began to think long-term and after finding a free on-line workshop on running a "Cottage Food" business and registering for it (the workshop wasn't until December), I decided to move forward. I already had tons of recipes at my disposal on my food blog, so I knew that I wouldn't need to be continually testing out new recipes! I then began to think that we probably should come up with a name and a logo. This is where an artist friend of mine, that I had used for classes for the disability ministry came into the picture. I asked him if he could start private art lessons with Dominic (even though Dominic had showed ZERO interest at previous art events with the disability ministry). Dominic started his weekly private art lessons in August of 2020 and except for a few times, he has been going steadily every week! It has been AMAZING to watch his self-confidence grow!! A few months into the lessons, I asked if Dominic could start designing a logo for the business. My artist friend agreed and we let Dominic make all the decisions about what it would look like, the colors, etc. I even ordered a shirt with the logo on it for Dominic and one for his sister!!!!!!!!!!!!!
Anyways, we got our first order at the end of November and little by little, we started to get orders. In the second week of December, a few days after the on-line workshop about running a "Cottage Food Business," my dad (who lived back in Maryland) went into the hospital with what we all thought was a minor infection. It turned out he was in end-stage Congestive Heart Failure and my beloved dad passed away on December 17. I was devastated by his passing and it took me until a week or so into January before I felt like I could re-start the business.
Friday, December 4, 2020
Never Giving Up Hope
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!!!!
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"
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 husba...
About two years ago, Dominic's private speech therapist starting teaching him the process of when you do chores, you get an allowance. Y...
Before this Pandemic took over, Dominic was pretty "set" in his ways. Trying anything new and out of his "comfort zone" ...