Thursday, December 15, 2016

Report Cards

Dominic has been in a special education classroom since he was three years old. Just in the past couple of years, he has been getting report cards with a "letter" grade. For a lot of children, paying them for good grades is a big motivator.  Dominic is motivated by positive praise. Always has been and probably always will be. During the day at school, he doesn't have a "typical" class schedule. Most of his time is spent in his classroom. Dominic does get "mainstreamed," into a few classes, like Choir, so it's like he is getting the best of both worlds. I have said this before and I'll say it again, when Dominic was first diagnosed with Autism at age 2 1/2, I had very low expectations for him. I knew absolutely no one at the time that had a child with Autism and I had so many doubts as to what he could achieve. How would I parent him? would it be similar to raising Lauren? For example, teaching Lauren to take a shower was relatively simple, Dominic is absolutely terrified of the shower, so he continues to take a bath.  Oh, my - clipping his fingernails and toenails can't be done at the same time, he will literally run out of his bedroom. I have to put it on his daily schedule or he will refuse to let me assist him. When Dominic asked to go to the barber in the Summer of 2015, that was a huge step forward on the life skills "road." Dominic's class from time-to-time will go to the movies and he gets to order his own popcorn and pop.  Since he was four, he has been on ADHD medication. I used to have to sneak it into foods, but for several years, he has been able to take it himself. He even takes a dose in the school office during the school day! He willingly takes his anti-seizure medication and will remind me if I forget. Dominic puts his dirty clothes in the basket in our bedroom and he sets and helps clear the dinner dishes each day. He dresses himself each morning, though he needs verbal reminders to move it along so he doesn't miss the bus. Brushing his teeth continues to be a struggle, but we work on it. Last week in the mail, we got Dominic's report card. My eyes went immediately to the comments section, specifically the comments about his life skills. It said, "life skills participation grade - excellent participation/effort." He had an A+ too, which was just the icing on the cake. Receiving that type of positive affirmation as a parent of a child with Autism, just energizes me even more to continue to work on those life skills every single day! I have great hope that he can live on his own one day. It is something I think about A LOT. Time will tell.

Friday, November 11, 2016

How an Entire School Choir Has Embraced Dominic

When Dominic started seventh grade back in August, one of the electives he picked was Choir. I liked that he wanted to do Choir, because it meant that he would be with many of the same kids he has been with for the past couple of years. At the concerts, about 75% of the time he doesn’t sing, but stands there. He always gets assistance from one of the guys or gals to help him know where to stand and when to follow the choir when they go on and off the stage. No one seems to care that he isn’t singing, I’m just happy that he can stand there for long amounts of time and not fidget too much. That in itself is an accomplishment for a child with Autism, ADHD and Epilepsy. Last month, after his Fall concert was over and the hubby and I were sitting in our seats and packing up our stuff, one of the girls in the choir came over and kissed Dominic on the cheek, it was very sweet. As we were leaving the auditorium, a bunch of his choir “mates,” were telling him what a good job he had done and were shaking his hand. I didn’t think that anything could top that experience. Well, I was wrong. Wednesday, I got a message from his teacher that I had to send Dominic into school on Thursday wearing his choir “clothes.” The school choir would be singing in a Veteran’s Day assembly in the morning.  Yesterday afternoon, Dominic’s teacher sent me a message that he had done a great job at the assembly. Cool. It’s always good to hear that! Thursday evening, my cell phone rang. On the other end of the phone was one of the paraprofessionals that works in Dominic’s classroom. She said something along the lines of, “I was going to text you, but I decided I wanted to tell you this over the phone.” She went on to tell me that during his Choir class that he has at the end of his school day, the kids spent the bulk of the time writing letters to Veterans. She remarked that the 50 or 60 kids were all talking, so the noise level in the room was pretty loud. Towards the end of the class time, Dominic walked over to the piano in the room where one of the girls in his class was softly playing. Once she noticed Dominic was waiting, she got up and let him sit down. He knows several songs to play on the piano, but he picked the Star Spangled Banner. She said as he played, the entire class got quiet and the kids were all watching and listening to him play. When he was finished, the entire class clapped for him! She told me that the kids all love him and he loves them. Wow, just wow. These kids could choose to ignore Dominic or bully him because he is “different.” Instead, they have made the choice to embrace him!

Wednesday, October 26, 2016

Everything is Mad with You

Back a few weeks ago, I "snapped," at Dominic. Lauren used to call it "barks." I typically reserve my louder, "bark-like," voice for when I think the situation calls for it.  Dominic didn't really do anything, I was stressed because I was running late and he kept repeating the same thing over and over. You could say, I lost my patience. Anyways, he got upset. After I calmed down a little I said, "I'm sorry, do you forgive me?" He said, "no." I was like, "excuse me?"  I repeated my apology again and he said, "no." This went on a few more times and then I let about 30-40 minutes go by before I repeated my apology again. This time, he accepted my apology. When I retold that story to my dad, he said, "does Dominic understand the concept of accepting an apology?" I was like, "yes, he most certainly does!" This past Sunday afternoon, I was resting on the couch in our living room. I have told Dominic he is too heavy to be sitting on me numerous times and half the time he listens to me and the other half of the time he doesn't.  Well, this particular time, he came and stood next to me, jumped up in the air and sat squarely on my stomach. It hurt and I said, "ow!" He immediately jumped off. I told him that he had hurt me and he got flustered and then proceeded to have a half- hour "meltdown." When he had composed himself, I said, "you hurt mommy, please don't do that again." He seemed to understand and the rest of the evening was uneventful.  Monday, Tuesday and today, he told me, "everything is mad with you." I think what he has been trying to tell me is, "everyBODY is mad with you." When he said it today (right as he was getting off the bus after school), I said, "are you still thinking about that??" He said, "yes, mommy." I said, "how did that make mommy feel when you sat on my stomach??" His response, "sad." I told him it did make me sad. Wow, for Dominic to be able to express how he felt (thinking everybody was mad at him) and how it made me feel is DOUBLY HUGE for a child with Autism!  Hopefully, the next time he is able to recognize his own feelings and mine, my stomach won't be involved! He is five feet tall and almost 150 pounds!!

Friday, October 7, 2016

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.

Thursday, September 15, 2016

Puberty, I'm So Not Ready for You!

Okay, Dominic is still my "baby," isn't he?!?!?! He likes to sit on my lap and snuggle. Hmm, considering that he is almost as tall as me and will be 13 next July, that probably won't be for too much longer. I have a little bit of experience with puberty with a boy since I've known my stepson since he was six, but our relationship is like that of a really good friend, it's always been that way. If he had any questions about anything private, he didn't ask me.  Lauren's transition in and out of puberty I could understand, since we are both women. Dominic, so far, is totally unlike anything I've ever experienced before. With the Autism, developmentally, he is behind those of his "typically-developing," peers, but I can tell you from the physical and emotional standpoint, he is right on "track." Shortly after he turned 11 last year, Lauren was telling me that she could "smell" Dominic. That's not a good thing. I can still remember the smell of  "body odor," from the boys when I was in junior high. Ugh. I went to the Kroger right away and picked up some Old Spice deodorant. It took a handful of times for me to show him what to do, but he can do it pretty well by himself now.  It took many, many years to get Dominic potty-trained and at home we have had to teach him to close the bathroom door for "privacy," when he needs to do his toileting. So far, so good on the acne front. He gets a few pimples here and there, but I have explained to him what they are and seems pretty nonplussed about it. In the past month, hair has started to crop up in places there hasn't been previously. I won't go into details, but you get the "picture." I keep telling the hubby that he needs to have a talk about the "birds and the bees," with our son, but with a special needs child, it isn't quite as easy as sitting them down and telling them. They did have some talks about puberty in school and he received some handouts, but I don't think he fully understood. He definitely knows that someone touching him in a certain way or a certain place is not appropriate, thank goodness. I still take Dominic into the ladies restroom with me when we are out in public and he is always in the stall next to me. I don't foresee that changing ever, unless he is with the hubby or another male family member/friend. He is way too trusting and outgoing to go "solo," into the men's restroom. The emotional component of puberty has been "challenging." Yesterday morning, he got mad at me about something shortly before he went to school and he took the palm of his hand and hit the basement door. I was like, "I don't think so." I reserve a certain "tone," of my voice to use for when I have to reprimand him and I used it yesterday. He knew I was not happy. In the past, I've had to send him to his bedroom to let him "cool," down. Dominic is not a big fan of that, so I try to save it for when he really deserves it. He's slammed the door in my face more times than I care to remember. Lauren has said, "even I didn't do that!" Just like I wish there was a "manual," for raising a child with Autism, this is a time when I wish I had a "manual," for boys with Autism going through puberty. I'm so not ready for all of this, but I guess I better be!

Wednesday, September 7, 2016

Body "Shaming"

Back in July, I heard about a young, "semi-famous," young lady, Dani Mathers (she was Playboy Playmate of the Year), putting a picture that she "claimed," was meant for a friend on Snapchat showing an older gal undressing in a women's locker room. The picture showed her stifling a laugh with the quote, "If I can’t unsee this then you can’t either.” Wow. Okay, I have lots to say about this, so hang on tight for this soapbox "rant."  First of all, when you are in a women's locker room, it's PRIVATE. You don't sit there taking pictures of someone else, especially while they are undressing. The woman who got her picture taken could press criminal charges. I really hope that she does! Second, the older gal was in her 70's. I applaud her for going to the gym. Did Ms. Mathers know anything about the woman? is she married? have children? have grandchildren? That picture is out in the Internet forever. Did Ms. Mathers think about that before she took the picture with the unflattering caption? No, I'm sure she didn't. Taking the picture and posting it is bullying. When I was in high school, I was bullied by some of my peers. They thought it was the funniest thing in the world to make me cry. Even now, 35 years later, I still think of those women with disdain. The way they made me feel is something you never forget. Bullying is so much worse now with social media. Third, I don't buy the whole, "I'm new to Snapchat," apology. Ms. Mathers tried to apologize,

“I just want to acknowledge a photo that I accidentally posted,” It was absolutely wrong and not what I meant to do. I chose to do what I do for a living because I love the female body and I know body shaming is wrong, that’s not what I’m about and this is not the type of person I am. The photo was taken as part of a personal conversation with a girlfriend and because I am new to Snapchat I really didn’t realize I had posted it, and that was a huge mistake. I know I have upset a lot of people out there but please, please believe me this when I say this: This is not the type of person that I am. I have never done this before and I will never do this again, you have my word.”

Why would you send a picture of an older gal undressing to your "friend," in the first place? If Ms. Mathers thinks she has a beautiful body and it makes her feel good to mock someone else then I think it shows exactly the "type," of person she is. Finally, who is Ms. Mathers to judge anyone? She knew what she was doing wasn't right and she still did it anyways. I think she needs to be punished to the full extent of the law, which could be $1 million and time in jail. Unfortunately, no amount of money or jail time will help the embarrassment I'm sure the older gal felt when she found out. I'm sure she had no clue that Ms. Mathers was watching her, much less taking a picture of her. Okay, thanks for listening, I'm done now!

Tuesday, August 16, 2016

What This Picture Doesn't Show

Earlier in the summer, I was asked by one of the managers at the Goldfish Swim School if we wanted to "move," Dominic up to the next level since he has been at the beginner level since he started back in April of 2015. I said, "has he learned all the skills to go to the next level?" She told me that he hadn't. I told her the original reason we had started lessons for Dominic at the Swim School was because when we were on a trip to Jamaica earlier in 2015, Dominic and I had started to drown in the resort pool and had to be rescued by the lifeguard. I told her that I didn't want him to be moved up until he learned all the skills in the beginner level. Dominic is twice the age and size of a majority of the kids taking lessons there, but it doesn't matter to Dominic and I. I've never heard any parents make comments or point or anything like that. What this picture doesn't show is everything he has learned in the past 17 months, like having to adapt to new instructors (he is on his third one), gaining self-confidence and having to be patient and wait his turn during the swim lessons. After his class is over, we go over to the dressing room and I assist him in getting his dry clothes on. About a month ago, I said, "hey, do you want to get dressed by yourself?" His response, "yes." I said, "mommy is out here if you need me!" After about a minute, I said, "do you need any help? do you need me to come in?" His response, "no!" Well, that sounds about right for a 12-year old boy!! LOL. There are showers located in the swim area and I ask almost every single time after his lesson if he wants to try and rinse off. His response is always a resounding, "no." He is terrified of taking a shower, I'm guessing it's the sensory aspect of it. He still has a hard time verbalizing his "reasons," for why he won't do something. That is a continual "work in progress." I'm hoping it will be like when he "asked," last summer for a haircut. He has to be the one to initiate the process. We shall see. Last Friday, after Dominic's class was over, I was handed this:

He was "moved," up to the "Glider," level!! I think my smile was as wide as his! We have tried soccer and baseball and it didn't seem to be the right, "fit." I'm hoping that swimming will be.  Michael Phelps, watch out!

Wednesday, July 13, 2016

So, That's What "It" Is

Ever since I was a toddler, I have worried. When the first day of school would start approaching, I would work myself up to the point of making my stomach hurt. My mom would let me stay home and by the second day of school I was fine. I'm sure my friends at school were wondering why I  would always miss the first day. My second grade teacher thought there was something "wrong," with me because I didn't talk. Some of my classmates thought I was "stuck up," because I wouldn't talk to them. As I grew older and starting hosting family gatherings, my worrying would be off the "charts."  Even though I was 100% completely organized, again I would get myself worked up to the point of my stomach hurting. Once everyone would start to arrive I was fine, it was like the worrying was switched, "off." When the hubby and I would get an invitation to a social event, about 3-4 hours ahead of the event, I would start having a headache and a stomachache and would convince my husband to go without me because I didn't feel well. Fast forward to November of  2013. I had an appointment with my primary care doctor and I was telling her how much I had going on in my life.   She diagnosed me with, Generalized Anxiety Disorder. Talk about a "light bulb," moment. After 45 years, I FINALLY had a name for all those feelings, all that worrying. Hurray! Okay, the next decision was to figure out if I wanted to go on medication. Being a fiercely independent person, I thought it meant admitting I couldn't handle "it," by myself. Good grief, it doesn't mean that at all. Being put on two different medications was one of the best decisions I have ever made. It doesn't mean you are admitting defeat and are weak, it means you are strong by doing something to help yourself. I am not a doctor and I know that medication is not for everyone. All I know is that the medication has worked for me, for the past two and half years I have felt more, "balanced." The "worrying," isn't 100% gone, but it is manageable. I think it is good to talk about mental health issues.  I loved it when Kristen Bell, a celebrity recently talked openly about her anxiety.  I admire her even more than I already did for speaking out.  Isn't it about time that we talk about "it?"

Monday, June 20, 2016

Sensory Overload

Dominic has "outgrown," some of his sensory issues, but not all. At church, he is usually okay with a man singing, but if a woman with a high-pitched voice is singing, he will plug his ears. I often wonder what that must feel like to him. I wish he was able to tell me. This past Saturday, since Dominic was in dire need of some nice dress shorts, we headed to Sears, because their clothes seem to fit him well. As we stepped into the boy's dressing room, there was a "ding-dong," chime that caught both Dominic and I off-guard. It was really loud, even to me.  Every time we went in and out of the dressing room, this is what he would do:

The picture is kind of blurry, because he was practically sprinting out of the dressing room. He would continue to plug his ears until I reassured him it was fine.

By about the third time we headed back to the dressing room, he was done, he kept saying, "time to go home, time to go home." I had to promise him McDonald's french fries when we were done, to get him to cooperate with me. Believe me, I have tried multiple times to buy clothes for him in the hopes of them fitting and I almost always end up returning them because they don't fit.  Dominic is not a big fan of trying on clothes in a dressing room to begin with, but you throw in the loud "ding-dong," chime it certainly adds a whole layer of extra stress that we certainly don't need. Using a public restroom with Dominic can be an adventure in itself. The self-flushing toilets and the automatic hand dryers are the WORST. Sensory "overload," at its finest. You can't really not use a public restroom if you are out and about. Dominic calls any kind of bug a "bee." If he sees a fly or gnat in our house, he will go running upstairs into our bedroom and slam the door until we reassure him we have taken care of the matter. I'm thinking the sound of a bug must sound a like a chainsaw in his "world." We can't keep Dominic in a protective "bubble." He has to be able to explore everything this "world," has to offer him.

Thursday, May 26, 2016

Convincing Another Special Needs Mom My Son Has Autism

When Dominic was first diagnosed with Autism at 2 1/2 years old, I felt like I had tell EVERYONE. If he didn't talk when asked to, I would say, "oh, it's because he has autism." Fast forward to nine years later, the point we are at now. This past Sunday, I was at a wonderful event and I was meeting new people. I was chatting with two young women and I told both of them separately that Dominic had autism in the course of conversation.  Both of them had the same response back, "we thought so, but didn't want to ask." I told them basically they could ask me anything. I know that not all special needs parents are that way, but over these years, that is the parent I have evolved into. Anyways, recently I had a discussion with another special needs mom, though I'm not quite sure that I would call it that. It was more like I was in a courtroom and I was having to defend myself. Let me explain. I had a special needs mom tell me something a long, long time ago that has stuck with me and probably always will. This mom was one of the nicest, sweetest women in the world that has since moved away. Her son has both Down Syndrome and autism. One of the times we chatted, she said, "you have it much harder than me, people take one look at my son and know," "when people look at Dominic they can't tell." The worst things my family and I get from other people aren't comments, but "dirty looks," because they think he is misbehaving. I used to be so ultra sensitive about it, but not anymore. I just smile and move on. Okay, back to the mom I was talking to recently. This particular gal (who has a son with autism) is what I would call an acquaintance. We chit-chatted for a minute or two and then she proceeded to challenge me as to whether Dominic has autism. She kept hammering away at me and then I finally said, "yeah, he talks to himself and has other autistic traits." She eventually backed down, once I said that. Yikes, I have never had to convince another mom of something like that. Wouldn't it be great if diagnosing autism was like when you take a home pregnancy test? One line for no and two lines for yes?? Unfortunately, that is not the way it works. Diagnosis is based on a set of criteria. According to the website,

"Autism spectrum disorder is a serious neurodevelopmental disorder that impairs a child's ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning." "The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity."

Once someone knows that Dominic has autism, the next question usually is, "so, where does he fall on the spectrum?"  I try very hard not to judge other parents (whether their child has special needs or not), because I wouldn't want someone to judge me. Wow, talking to that mom earlier in the week, I immediately felt on the defensive. I didn't get upset, I think mainly because I was so taken aback by her boldness. If anything, I think my reaction was more of shock. I really wish I would have been better equipped to handle her.

Thursday, May 12, 2016

You're Only Human

Recently, when I was heading back home from a meeting, I got lost. It would have been fine, except I had to be home to get Dominic off his school bus. I thought about calling my husband, the bus company or one of my friends to help me, but in my head I kept thinking I could make it home before Dominic. Well, I didn't get home until about ten minutes past the time he gets dropped off. As soon as I got home, I immediately called the bus company and explained my situation. They told me that Dominic was still with the bus driver and she would drop him off shortly. I don't think in all the years Lauren rode the bus, I ever missed getting her off the bus, or if I did, I had my husband or a friend greet her. When Dominic got dropped off that day, after I apologized profusely to the bus driver, I brought him inside the house. I kept telling him, "I'm so sorry, I'm so sorry." I was beyond distraught, I felt like I had let my son down. During my evening conversation that I have with my dad, I was explaining to him what had transpired with the bus and me not being here for Dominic. After talking about it for about ten minutes, my father said, "you're only human." Hmm, I guess he's right. I try so hard to be the best mother and stepmother that I can be, sometimes I don't cut myself enough slack to make mistakes.  I really, really needed to hear those three words, "you're only human," that night. I don't think my dad realized how much he helped me - I was finally able to let go of that mom "guilt,"  I had carted around with me for several hours. Well, I have two important words for my dad, "thank you." 

Thursday, April 28, 2016

Give the Opportunity

In the Fall of 2015, I took Dominic along with me to a local horse farm to meet the owner.  It was a relatively quick visit, but I think it made a big impression on him. This past Sunday, we went back to the horse farm because I wanted to plan some events for the two non-profit organizations I volunteer for. The owner of the horse farm having met Dominic once before, remembered how anxious and wound up he got around the dogs, so she had put her dogs in the backyard of her house where there was a fence. Pretty incredibly thoughtful, don't you think? At one point during our visit, I started to scold Dominic because I thought he was taunting the dogs. I soon figured out that he was playing with them - Dominic would come to the fence and three of the dogs would start barking and then he would run to the other end of the fence and the dogs would run with him! It was a beautiful day and Dominic went in and out of the barn (where he fed a horse out of the palm of his hand), walked around the farm, basically had the run of the place.

Every so often a cat would walk by. In the past, let's just say cats and Dominic have not been a good "mix." He's never had an experience that I can recall which would make him so afraid, I'm guessing that it's because they are unpredictable and Dominic THRIVES on predictability. More and more, I have been hearing that animals are a good "fit," for adults and children with special needs and for those with anxiety and depression. There is definitely something comforting and soothing about petting an animal. Anyways, I figured Dominic would be ready to go within a half hour or so, based on our first visit last fall. That was definitely not the case this time! Since we ended up at the farm for almost two hours, it was very, "eye-opening," watching how Dominic went from trying to shoo the black cat off the steps to petting her,  not just for a little bit, but A LOT!

As it got closer to dinner time, I told Dominic we needed to go. We went inside the owner's house briefly and at first he was a little apprehensive because she had about three or four cats milling around inside her house. Dominic sat down on the couch and the owner said something like, "would you like to learn how to hold a cat?" I thought he would say, "no, thank you," but he didn't!  She showed him how and then he picked one up!  Wow, to go from being terrified and very skittish to holding a cat? Dominic then moved to a chair and would you believe those same three or four cats came over to him and were vying for his attention?!?!?!  I told the owner of the farm that Dominic was the "cat whisperer." It's been nine years since we got the diagnosis of Autism for Dominic. Even after all this time, I am still guilty of thinking he can't do something. Boy, did I learn my "lesson," this past Sunday. I need to give him at least the opportunity to be open to new experiences, because if I don't, then I am doing a real disservice to him.

Saturday, April 16, 2016

Awareness - First Step to Understanding

On our Spring Break 2015 trip to Jamaica, both Dominic and I almost drowned in the swimming pool at our hotel. I had went to the end of a water slide where the water was slightly above my head and Dominic followed me. I wasn't able to hold him up and we started sinking to the bottom of the pool. I put my arm up and the lifeguard dove in and brought us back to the surface. It was scary with a capital, "S."  Shortly after we got back from that trip, I decided I better sign him up for a beginner swimming class at the Goldfish Swim School where we live. I asked if they had a special needs swim class available and they said no. I almost didn't sign him up, but then decided I had to let go of my anxiety about it. I love the way the instructors at Goldfish teach. There is a lot of positive encouragement ,"high-fives," and participation ribbons which Dominic thrives on.

About a week ago, I got an e-mail from the General Manager. She said,

"I actually have a few questions that I thought you may be able to help me with in regards to Autism:

1  Do you know of any Autism Awareness Instructor in the area that would be willing to talk/teach my team about specific tactics/awareness in this area?
2.   Do you use a PEC system with Dominic? 

3.  What are your thoughts of having a specific half hour of lessons for children with special   needs? Would this be something you would like for Dominic or do you prefer how we have it now, where the children are all integrated together?

I thought you might have some good insight on these topics!"

As one ALWAYS willing to express my opinion, I wrote her back. In response to question #1, I told her that I would look around for an instructor to teach all different types of special needs that could train her "team." Question #2 -  Dominic does use a "PEC" system (Picture Exchange Communication System) - children with Autism, especially, are "visual" learners. Question #3 - I thought it would be a good idea to have a separate class available for children with special needs. I told her Dominic is okay in his current class (he is on his third instructor), but a lot of children with Autism (and other special needs), like consistency, routine and sameness. I loved that the Manager reached out to me, specifically about whether I knew anyone that could talk/teach her staff about specific tactics and awareness of those with special needs. Awareness is the first step towards understanding.

Thursday, March 31, 2016

Stretching Those "Wings"

About a week or so before Lauren came home for the Easter weekend, she asked me if I wanted to go with her to see My Big Fat Greek Wedding 2 at the movie theater.  After  I double checked with the hubby that he could watch Dominic for a few hours,  I told her yes, we were on! One thing I've learned now that Lauren is about a month away from finishing her first two years of college - if she wants to spend time ALONE with me, I clear my schedule and make it happen! Lauren's first semester of her freshman year was a HUGE adjustment for me because we are very close. When she was little and a kid cut her off at the slide on the playground, I instantly stepped in and was rectifying the situation for her. Riding her bike to a friends house for the first time, I made her promise she would call me when she got there! The time she told me that she wanted to call me "mom," and not "mommy," it was hard, but I understood. As she went through high school, I had a pretty good handle on how she was doing, but at the same time kept out of her business. When it came time to shop for things for her dorm room, we did it together. Since she took her car back to college in August of last year, we haven't seen her that often. Lauren will tell me she is sorry, but I tell her, "don't be sorry, I'm glad you are having such a great time at college!"  My Mother's Day gift last year from Lauren was a poem that she wrote herself:

Mom, You're so inspiring
Your wisdom's never tiring
There's never a day that goes by
That something you do doesn't catch my eye
Whether it's making something scrumptious to eat
Or patiently asking Dominic to take a seat
Or giving me advice
Even when I ask for your opinion more than once or twice
Your endless support
Is irreplaceable, and in short
I admire you so much
And in being a mother, you have a special touch
I cannot thank you enough for all that you do
Mom, I love you!

Okay, now that I've wiped the tear from the corner of my eye, I know that as she gets older, turns 21 and graduates from college, she will continue to stretch those "wings" even more. But, you know what? This "momma bird" is okay with that, because Lauren knows I will always be there for her, just as I always have been.  

Monday, March 14, 2016


When the hubby brought Dominic home from his Confirmation Preparation class a few weeks ago, he told me that his teacher (Mrs. W) mentioned he had cried during class.  My husband said he asked Dominic a few times on the car ride home, "why were you crying?" No response.  I tried asking him a few times too and got no answer either. When I reached out to Mrs. W later, she told me,

"Dominic seemed quite pensive the entire class, as if he were thinking of something else.  We asked him a few questions and it was obvious he had something else on his mind.  It was absolutely sweet that the other kids had such concern for him and wanted to know he was okay.  What a tender moment!  One of his classmates wanted to know if he needed a hug, so we asked him and 3 volunteered to give him a quick hug.  He didn't seem to mind, and I know it did them more good than him."

Wow, what empathy Dominic's classmates had! Still, I didn't know what was bothering him, so I waited a day or two and then asked him again. His response this time was, "overwhelmed." I thought well, he had a full day of school and then his bus brought him home an hour late. He had a little less than a half hour to get a snack, etc. before the hubby took him to class. I relayed the story to Lauren this past week and she said something like, "that's pretty good he could tell you that!" I have to also remember that Dominic is a "tween."  Puberty and Autism can sometimes be a challenging "duo."  I have to keep in mind that he might not always be able to tell us what's wrong because he might not know himself until he has had some time to think it over.

I wondered how he would do today at school (he missed all of last week since we were out of town). Yesterday, we drove for 10 hours straight. With it being daylight saving time plus Lauren leaving to go back to college this morning, I wondered if I would get a call from his teacher that he was having a tough time. He made it through the day fine and he even had a substitute bus driver this afternoon!!  Right now, I hear Dominic in the family room "scripting" scenes from both  Little People and  Barney. He does that when he is over stimulated. I'm letting him have that time in his "world," to relax before we head to his Confirmation Prep class in about an hour! We all need ways to "decompress," right?

Thursday, February 18, 2016

Need to Call Bella's Mom

Dominic at least a few times a week will tell me, "need to call Bella's mom!" Who is Bella you may ask? Here is the answer to that question:

I first met Bella shortly after Dominic's first grand mal seizure. She and her mom approached me at the Meijer grocery store back in June of last year as I was grabbing a milk jug out of the dairy case. Dominic and Bella go to the same middle school.  I have never forgotten what Bella's mom told me that day, "I would love to get our children together and be in Dominic's life however much you will let us." Bella's mom has the most generous heart and has passed on those values to her three children.  Bella and Dominic made sugar cookies last summer:

When Dominic had a choir concert at school and neither Lauren or my husband could attend, Bella and her mom surprised us after the concert!

The number one thing I admire about Bella is how incredibly compassionate she is. There is a respect and admiration between Dominic and Bella which is quite unique. This past Sunday, when Bella, her mom and Bella's little brother stopped by with a decorated heart-shaped cookie and a homemade valentine, Dominic was uncharacteristically SHY.


He would come over, say, "hi," and then run away. In a lot of ways, he was acting like a "typical" preteen boy, not like an 11 1/2 year old boy with Autism :) I foresee this relationship and friendship lasting a very long time. 

Thursday, January 28, 2016

A Friendship Forged By Elevator Rides

When our family moved to Michigan over 14 years ago, one of the very first things we did was join a church. We are blessed to be part of such a great faith community. About a year and a half ago, a gal that I knew, but not really, really well, (Mrs. F) approached us after Mass. She was telling our family how her older daughter had worked over the summer with special needs children. A few days later, she sent me this message:

"Cathy, I don't think I was very eloquent because I hadn't thought out exactly what I wanted to say. But I was thinking about you all summer. I guess what i wanted to tell you was how much I admire you and your husband. Dom is your son and I know you would do anything for him, just as you do for Lauren and your stepson. But still, you are so incredibly patient and loving...and just amazing. You are lucky to have Dom in your life...but Dom is also a very blessed little boy. That is really what I wanted to say."

Wow, I thought she was very eloquent! Such kind and supportive words. For about the past two years, we have used an elevator ride as a "reward" for Dominic behaving well in church. There have been a handful of times where he didn't get a ride because he acted up and he was NOT happy. Looking forward to an elevator ride after church has been a HUGE incentive for him. My husband, Lauren or I used to accompany Dominic, until one day I asked Mrs. F if she would like to ride with him. Now, she is his number one choice for those elevator rides.  She told me recently,

"I'm honored to be someone that Dominic is comfortable with and wants to share his special treat with. He is an awesome young man. I enjoy those elevator rides, too!!"

The definition of a friendship according to the Merriam-Webster dictionary is, "a friendly feeling or attitude - kindness or help given to someone." It has been really cool to watch Mrs. F and Dominic become "buddies." I appreciate the time she has taken to not just to get to know Dominic, but our entire family. We both have kids in college and what a great support she has been to me. Thank you Mrs. F from the bottom of my heart.

Saturday, January 23, 2016


Dominic getting diagnosed with Epilepsy last year by a pediatric neurologist was not anything I could have ever predicted. After hearing from more than person that Autism and seizures going together is not an unusual thing came as a HUGE shock to me. Dominic having the fourth seizure AFTER having the anti-seizure medication increased after the third seizure was very discouraging. When I saw my doctor for a physical in December and I told her that for the past few months prior to the appointment I had felt exhausted all the time even with several hours of sleep a night, she gave me a prescription for an anti-depressant. I was thinking to myself, good grief, I'm not depressed?!?!  I'm just tired!!!  But, I have to say, it's only been a month, and I definitely feel much more "balanced." The constant stress and worrying about whether Dominic was going to have another seizure had really begun to take a toll on me, both mentally and physically. Each of the four seizures have been very different in both the intensity and duration. The neurologist suggested upping the medication again after the fourth seizure and so far, so good! Being a caregiver for special needs children and adults is exhausting and constant. You have a whole different layer of worries. But, you also celebrate every accomplishment no matter how big or small. I feel like breaking out the New Year's Eve horns and marching around my house every day Dominic doesn't have a seizure.

I was having full blown conversations with Lauren when she was 18 months old. I was ecstatic this past Thursday because Dominic told me, "Can I ride the school bus?" Those full, spontaneous and complete sentences are not that easy to come by. Lately at home, Dominic has been "scripting" from old Barney videos. Darn that purple dinosaur!! Potty training Lauren was very easy for the most part. For Dominic, it took seven years. Getting his eye contact for more than 10 seconds is cause for a party! Back in December, we had a gal with Down Syndrome making her First Holy Communion at our Special Needs Mass for the disability ministry. When I was chatting with her mom, I was so excited for her daughter, I could barely contain myself. I told her, "it's almost like it's my daughter making her First Holy Communion!" Yes, that most certainly was a time for celebrating!!

Thursday, January 14, 2016

Why I Gave $3.00 to the Man on the Corner

When I first got out of high school, I worked for a handful of years in downtown Washington, DC. I used to see quite a few men and women living on the streets. One morning, coming off the subway and riding the escalator to the street level, I remember very vividly a homeless gentleman saying to me, "do you have a cigarette?" I didn't say anything and kept walking. He started following me down the street shouting, "didn't you HEAR me? I asked you for a cigarette!" I turned around, looked at him and said, "I don't smoke." His personality suddenly changed and he apologized for yelling at me. Since moving here to the Midwest, I rarely see someone holding a sign saying they need money, food or a job. Shortly before Christmas, the hubby was asking me what I wanted for a gift. I told him I already have everything I need. Yesterday, when I was on my way to a meeting for the disability ministry, while waiting at a red light, I saw a gentleman probably about my age, holding up a sign that said, "hungry." I only had $3.00 on me. I thought to myself, I could ignore him, but it was so incredibly frigid yesterday that I rolled down my window and handed the money to him. You would have thought I was giving him a million dollars. He was so grateful. I hope later on in his day, he went down the street and got out of the cold and bought himself a cup of coffee. Who am I to judge whether he was honest or not? My feeling was that if he was standing on a street corner when it was so cold, he wasn't doing it out of choice, but out of  necessity. Maybe he had a small child that needed formula or some diapers. Hard to know. These are the people on the "fringes of society." As I sit in my house this morning writing this post, hearing my heat just click on, I'm extremely grateful and thankful for having food on the table and a roof over my head.

Tuesday, January 5, 2016

It Starts the "Conversation"

A t-shirt to me is like a walking "billboard."  It spreads a "message." When Dominic's teacher was ordering "Autism Awareness," shirts a while back, some of my family and friends ordered one.


I especially like the message on the front - "Autism Awareness - Accept - Understand - Love." This morning, I did a quick Internet search of "Funny Autism T-Shirts." While most of them were acceptable, I came across a few I would not consider acceptable, such as, "I Have Autism, What's Your Excuse?" and "Hey, Keep Staring at Me and You Just Might Cure My Autism, Then We Can Work on YOUR Social Skills." Oh, my. Never in a million years would I wear a shirt with those kinds of messages - it immediately puts the other person on the defensive!! When my brother wore his shirt around where he lives, he had someone come up to him and they started talking about Autism, it "started the conversation." Pretty darn cool, don't you think?

Welcome to "Holland"

Have you ever heard of the "Welcome to Holland" story? I had heard of it, but never read it until about a week ago. It is wr...