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.

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, mayoclinic.org:

"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.