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, August 3, 2016

It's Not the Same

My mom and I growing up were very close. When she was diagnosed with end-stage congestive heart failure in the Fall of 2014, none of us in our family knew what to expect.

She was given just a few months, but she has defied the odds and is still here. Since her diagnosis, because she is not getting enough oxygen to her brain, her personality has changed. For me, watching this process has been heartbreaking. Little by little, she has left us and the person I talk to on the phone one to four times a day is not the same person I grew up with. I have come to terms with that and while I won't say it's been easier, let's just say since I took that mind set, I've been able to handle it better. Day before yesterday, she called me. I said, "hi, Mom how's it going?" Her response, "I'm still alive." That kind of comment would really have made me incredibly sad a year ago, but I just let it go in one ear and out the other. Yesterday morning at 7:30, right when the hubby was going out the door to work and I had about 20 minutes to get Dominic ready for his bus that takes him to summer school, the phone rang. It was my mom on the other end, very upset. Evidently, the facility where she lives told her she had an appointment at 8 a.m. that she didn't know about.  I took a few moments and tried to calm her down and then said, "mom, Dominic's bus is coming soon and I really need to go get him ready." My mom responded, "yeah, you go get Dominic ready for school, I'll just lie here!" I didn't have time to get upset and unfortunately more and more of the conversations I have with her turn out like that.  I am by nature a caregiver and I feel at a total loss because I am not able to help her. I have only been in this situation once before and it was with my mother-in-law. She had advanced dementia and eventually forgot how to swallow, went into hospice and it was fairly quick before she passed away. We have talked about hospice for my mom in the past and she has made it very clear she doesn't want it. I talk to my dad every evening. It's been really hard on him to watch my mom decline as she has, they have been married over 50 years. I tell my father that mom is a different person, she is not the same. Hopefully, it brings him a tiny bit of comfort. It has now been over a day and my mom hasn't called me. I know that she probably will not apologize for the way she talked to me. This has become my new "normal," with my mom.

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.