Monday, June 22, 2015

To the Mom in the Dairy Aisle


When you and your daughter came up to Dominic and I that Monday afternoon in the dairy aisle at Meijer and started talking to us, I know you had no idea what I had been through the previous 48 hours. The past Saturday, I had to call 911 because Dominic had a seizure and was unresponsive. I bet you didn't know that he went by ambulance to the hospital and that he had to be wheeled in on a stretcher and unfortunately this was not his first ride in an ambulance.  I bet you didn't know that I had to promise Dominic a meal from McDonald's if he lay still while the technicians did the CT scan of his brain. I wasn't able to tell you that day that he was discharged after a couple of hours because all of this tests were normal. I know that you didn't know that Sunday afternoon we had a fellowship service for the disability ministry that I am the program director for and when I got home, I found out that a beloved priest, who did our very first special needs mass had passed away. When I was reaching for the milk that Monday and heard a voice say, "there's Dominic," and saw you and your daughter walking towards us I had no idea who you were. We had just been to a follow-up appointment with our regular doctor who told me that Dominic would need to go to a pediatric neurologist over an hour away. When your daughter told me that Dominic was mainstreamed into her classroom for second hour all of the past school year, I thought that in itself was pretty darn cool. But, when you looked at me and said, "I would love to get our children together and be in Dominic's life however much you will let us," I was literally looking for your wings, because I assumed you were an angel. I didn't get a chance to tell you that day that Dominic had never been invited by a classmate to play, EVER. Your kindness that you showed towards me that day in the dairy aisle even though you had never met me, is something I will never forget, but will be eternally grateful for. Thank you so much from the bottom of my heart.

Thursday, June 11, 2015

Choosing to Talk About My Anxiety Disorder

Back when I was a child, my dad used to sing a song to me. He would sing, "oh, she worries, oh, how she worries." I would miss my first days of school, because I would "pre-worry" so much that it was debilitating. As I grew older, the "pre-worrying," followed me like a constant shadow. When I would host gatherings or other events for family and friends, the entire time beforehand I would constantly be worrying. Once the actual event or gathering would start, I would be fine. Once I got married and started having children, the "pre-worrying" continued.  About three years ago, I went and talked to a psychologist about everything that was going on in my life, because I was feeling a tad "overwhelmed." I distinctly remember looking right at the psychologist at one of my sessions and asking her, "so, do you think I have anxiety?" I expected her to tell me no. She was like, "oh, yeah, you do!" Wow, to finally have a "name," for all those feelings I had for so long was actually, well, life-changing. When I next went to my primary care doctor, she asked me if I wanted to be put on medication (Lexapro) for my anxiety. I was extremely hesitant. Well, let me just say this. I really, truly wish I would have been on the Lexapro since my teens. Up until now, just a few family members and close friends know that I have anxiety and take medication for it. I haven't really been keeping it a "secret," but rather felt that it was my private business. I have come to the conclusion that it is not something to be ashamed of and that's why I am choosing now to talk about my anxiety. It's a conversation that is long overdue. Demi Lovato, the singer, lives with bipolar disorder and has recently become the spokesperson for, Be Vocal: Speak Up for Mental Health, which is, "an initiative encouraging people across America to use their voice in support of mental health. Be Vocal aims to empower adults living with mental health conditions to speak up when talking with their professional support team and to speak up as a community to advance mental health in America." Wow, she is a mature young woman, isn't she? I have a ton of respect and admiration for someone that does that.  It seems like just about everyday, we hear of a young person taking their own life. Heartbreaking, isn't it?  Robin Williams, the actor, seemed to have it all. He evidently struggled for a long time with depression. How many of us knew that? I know I didn't. I guess he kept it "hidden" pretty well. Sad and tragic at the same time, huh? When someone has depression, unfortunately you can't just tell them to be, "happy," it doesn't quite work that way. Sometimes you need medication and/or therapy. I can only speak from my own personal experience, but I take my medication faithfully, everyday for my anxiety and am glad that I do. My "pre-worrying" has almost come to a complete halt.  How about this for an idea?  Let's stop sweeping mental health issues under the "carpet" and start the conversation!!!! 

Tuesday, June 2, 2015

I Want To Talk to Grandpa Mike

Last Christmas, my family and I drove back to Maryland for the holidays. Since my mom had just entered a skilled nursing facility a few weeks before, we stayed with my dad because I didn't want him to be alone.  Lauren and my dad share a love of  history, so they always have something to chat about. My dad and my stepson have known each other for more than 24 years, so they can always talk "guy" stuff.  It's been a bit more challenging though for Dominic to have a close relationship with my dad. One of the times when my dad visited us here in Michigan, Dominic did something my dad didn't like and he tried to discipline Dominic. I let my dad know right away that it was up to my husband or I to take care of that. My dad later apologized to me. On another occasion while at my parents house, Dominic starting playing around with the cuckoo clock that is in their living room. No matter how many times I told Dominic to stay away from it, he wouldn't listen. My dad would follow Dominic around to make sure he didn't touch it. It got to be kind of uncomfortable. I wish it was as easy as handing my father a "manual" on how to have a relationship with a grandchild with Autism. Since Dominic was just a baby when his other grandfather passed away, I really want my dad and Dominic to "learn" from each other, even though there is 70 years between them.  During the summer of last year, when we visited, my dad raised his voice very loud when Dominic was around. Every time since then, when he has seen my dad, he will go over to my dad and say, "hi, Pop-Pop," but then cover his ears and hum at him. Dominic is extremely sensitive to loud noises and I think every time he saw my dad he thought my dad would raise his voice again.  I think my dad was beginning to get annoyed with Dominic, until I explained to him the reason why he would cover his ears. Since the beginning of the year, I started calling both my mom and my dad every evening to keep up with what is going on with the both of them.  It's been a difficult adjustment for both of my parents, given that they have been married for almost 53 years. I call my dad shortly after dinner, about 8 p.m., every night and I go into the living room where it is quieter. I know my dad looks forward to my calls and we always "compare" notes on what is going on with my mom, since I am not always able to get a ahold of her.  A few weeks ago, when Dominic heard me talking to my dad, he came over out of the blue and said, "I want to talk to Grandpa Mike!" Pretty darn cool. He now talks to "Grandpa Mike" pretty much every evening. They both have so much that they can "teach" each other and I can't wait to see how their relationship grows and develops!!

Saturday, May 30, 2015

An Oldie, But a Goodie

I have written more than once about how I like to go through the old recipes and newspaper/magazine clippings that belonged to my mother-in-law. I have definitely found some good ones, that's for sure! I recently searched through the big pile of newspaper clippings and pulled one out from 1955. All four recipes had coconut involved, but only one had the quantity that they made. There were recipes for coconut macaroons, cornflake macaroons, baked tropical confections and marguerites. The only recipe I had all the ingredients for were the coconut macaroons, but I had no idea how many cookies it would make. One thing I quickly discovered about macaroons, they are super duper STICKY.  Also, make sure you use plenty of non-stick spray on the cookie sheet! I used an older cookie sheet and not enough non-stick spray, so they stuck a bit when I was removing them to a wire rack to cool. They still tasted great, though. Aren't the little scraps always the best?!?!?!?!?



Ingredients

1/2 cup sweetened condensed milk
1/8 teaspoon salt
2 cups shredded coconut, sweetened
1/2 teaspoon vanilla extract

Preheat oven to 350 degrees and spray a cookie sheet with non-stick spray. Set aside. In large bowl, put the condensed milk, salt, coconut and vanilla extract. Mix well with large spoon. Drop by rounded tablespoons onto the prepared cookie sheet. You should be able to get a dozen - these cookies don't spread very much.  Bake for 15 minutes or until the macaroons begin to turn golden brown. Remove from oven and let them sit on the cookie sheet about 5 minutes. Gently remove to wire rack to continue cooling. Keep in covered container at room temperature.


I loved "finding" this recipe - it was an oldie, but a goodie!!!

Sunday, May 17, 2015

I Can See It From Both "Sides"

By now, you have probably heard the story about the girl with Autism whose entire family was "kicked off" a United Airlines flight. When I saw this story on the news, my first thought was anger. Anytime I think that a special needs child/adult has been mistreated, I automatically go into that mode. Well, the more I read about what happened, I could totally see it from both "sides."  I wrote recently about when we made our reservations to fly to Jamaica for spring break, American Airlines had us separated from Dominic. At first, the customer service representative told me they couldn't help me, but I persisted and a supervisor made the change. While some airlines are excellent with special needs, others are not. The mother could have definitely had a better choice of words when talking to the flight attendant about getting her daughter a hot meal. Her words were something to this effect,

"I have a child with special needs, I need to get her something.' The flight attendant said, "I can't do that,'" the mom then explained, "How about we wait for her to have a meltdown, she'll be crying and trying to scratch in frustration. I don't want her to get to that point."

I can certainly understand the mom having such utter frustration that she felt she had to use the word "scratch" to get the attention of the flight attendant, but when she did, it was perceived as a "threat." The pilot of the plane has a responsibility to all of the passengers. If the girl with Autism did hurt a fellow passenger which according to the mom was a possibility, then the pilot had to make a judgment call. The flight attendant who initially refused to help the mom out by getting her daughter a hot meal sounds like he may need to get some "training" on how to assist those with special needs. Anyways, what it sounds like to me is what was a small problem, escalated quickly into a big problem. What I found fascinating is the number of people who felt the need to comment on social media. There were comments like, "that's why we don't fly with our child/adult with special needs," and "I won't ever fly on United." There were others targeting the mom such as, "the mom was unprepared and she should have planned accordingly." Well, she tried to get her daughter to eat before the flight and she wouldn't. The comments that I thought were the worst were the ones from people who didn't have special needs children/adults saying stuff like, "why would you take your special needs child/adult on a plane in the first place?" Hmm, okay. Dominic has flown four times now and we have learned from experience that he is very scheduled and needs to know everything in advance.  On our trip to Jamaica recently, we brought a spiral notebook and a pen/pencil and I wrote down every single thing we were planning to do on our trip. Dominic held on tight to that notebook for both the flights to Jamaica and back. I'm not saying it would work for every child/adult with Autism, but it has with us. I also kept multiple snacks and electronic devices in his backpack, so I was just about as prepared as I could be. But, as those of us with children, special needs or not know, there is always the possibility of being caught off-guard, right?  Did the pilot make a mistake by having the plane make an "emergency landing?" Possibly.  Could the mom have said something different to the flight attendant when asking for a hot meal for her daughter? Maybe. Here's what I hope comes of this whole story. That United Airlines and those other airlines that don't have a program in place for those with special needs learn from those airlines that do. I also hope that other families like ours are willing to try and fly. We are proof that it can be done. One last parting thought. For those who don't travel with special needs individuals, let's try to not be so quick to "judge" those who do. 

Friday, May 8, 2015

The Sky is The Limit for this Boy!

I'm guilty. I admit it. I am reminded by both Lauren and the hubby, more often than not, that Dominic is capable of much more than I give him credit for.  I really don't know why I sometimes underestimate what he can do. Maybe it's because I don't like to see him fail? or get frustrated? I know to learn, he will get upset and cry and possibly scream. I guess it's the maternal instinct in me, I don't like to see my children or anyone else's children sad. Having to tell Lauren that Santa Claus wasn't real was a pretty tough thing. At one time, I was convinced Dominic would never get toilet trained. It truly was easier to just change his diaper or Pull-Up. We knew there was no physical reason why he didn't want to get potty trained, which made it all the more frustrating. More than once I was ready to give up, but his old teacher, Mr. P., planned out the whole process and it did eventually happen. Just in the past three weeks, he has ASKED to use the bathroom both at home and at school. Major development and milestone :) A few years ago, I tried and failed at teaching Dominic how to tie his shoes. Thank goodness for his amazing teacher and his paraprofessionals in his classroom. He learned from them how to tie his shoes!


When Lauren came home from college a few weeks ago, one of the first things she did was tell me to take off the training wheels on his bike. She spent one afternoon, helping him get his balance.



I tend to over talk with Dominic and catch myself wanting to "prompt" him still too much. The other day, he told me that I was, "busting his chops." Hmm, well most likely I was. Dominic's speech and language continues to be behind that of his peers, but he has made remarkable progress since he started fifth grade. Since last summer, we started taking Dominic to a private speech therapist once a week with the hope of one day integrating him into one of her "social groups." It's pretty intensive therapy and she makes him work really hard for those 30 minutes. She gives Dominic "homework" for the week and I try my very hardest to always make sure it's done!! Recently, his speech therapist was giving Dominic a lot of praise for how well he had done during the therapy session. She then turned, looked at me and said, "the sky is the limit for this boy!" Wow, as a mom of a special needs child, to hear those words, was pretty awesome.  Never again will I doubt what Dominic is capable of!! 

Wednesday, May 6, 2015

You Are Beautiful, Mom

My mom and I have always been close. Besides being mother and daughter, we are also friends. When my family and I moved to Michigan in December of 2001, I knew that my mom would have a difficult time adjusting to the fact that I was going to be living 600 miles away. While we absolutely love the Midwest and everything it has to offer, when a friend or family member is in need back on the East Coast, it really makes me wish I could be in two places at the same time. My mother was diagnosed with heart problems at the beginning of August of 2014, which unfortunately are so far advanced, there is nothing the doctors can do to help her.  This past December,  my mom was moved to a skilled nursing facility. It has been an adjustment for all of us, but I think she has finally reached a point where she considers where she lives "home." Her heart is so weak that she is confined 24 hours to her bed. I have always considered my mom to be an attractive woman and that her smile is one of her best features.


When the kids, the hubby and I visited around Christmas, I knew I wanted Lauren to take a picture of my mom and I. She was trying to tell me that she didn't think she looked her best, but I told her, "You are beautiful, mom!" Lauren captured the essence of my mother, don't you think?
 
 
I don't talk about it much, but it's been very, very, hard to be apart from both of my parents at a time like this, but particularly my mom, because when I hang up the phone after my evening conversations with her, I truly don't know if that will be the last time I talk to her. The way I have reconciled it in my head, is that I will enjoy every single moment that I have the chance to talk to her. As much as I like to be in control of everything in my life, this is definitely a situation where I am not in control!! Anyways, since I can't be with my mom on Mother's Day, when I saw this card, I knew I had to send it to her!
 
 
 
It isn't the same as being there, but hopefully it comes close!