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!

Friday, May 1, 2015

Yes, I Know I'm a "Dinosaur"

This past school year, I helped co-teach a first grade religious education class. During our final class, a few weeks ago, I had to take an important cell phone call from the hubby. When I came back to the table and sat down to continue the lesson, one of the little boys looked at my phone and then at me and said, "you have a really old fashioned phone!" Yes, I STILL have a TracFone "flip phone." I communicate mostly by e-mail and Facebook, so I really haven't felt the need to switch to another kind of phone. Lauren taught me how to text a few years back, so when someone texts me, I can at least text them back!  A favorite saying of mine is, "good grief." The other day I caught myself saying, "heavens to murgatroyd." Yikes. I love to look through my old cookbooks and find "vintage" recipes.  Since becoming the program director of a disability ministry, I have met a handful of different priests and even a retired bishop!  Yesterday, I met with an 84-year-old retired priest who will be doing our Mass on Sunday. He is a busy man and his cell phone kept ringing. He was telling me how he just learned how to take pictures and put them on his smartphone!  I showed him my TracFone and he said, "I don't think I've ever seen a phone like yours." I looked at him and said, "yes, I know I'm a dinosaur!" LOL. I've been thinking lately, that maybe I need to have a new hairstyle, given that most of my life I have worn "bangs."

I don't know though, if it's a style that has worked for me for so long, why change it?!?!?!

Thursday, April 16, 2015

I Knew in That Instant

In the Fall of 2014, I applied to take a training session to work at the libraries in our school district. I didn't make the "list" and while I felt a bit disappointed, I knew deep down in my heart that opportunity was not the one for me. My life was already very full of helping transition and guide Lauren through her first year of college, helping to manage my mother's care in a nursing home, co-teach a first grade religious education class, guiding my father through all the challenges of living alone and getting Dominic adjusted to middle school. At the back of my mind though, I had this feeling that I wanted to be doing more, but I just didn't know what that "more" was. I don't think I would qualify the way I felt to be a mid-life "crisis," but I definitely knew I had reached a "crossroads" in my life. I thought about looking for a job or going back to college. Neither of those two ideas seemed like the right "fit."  I began to wonder if I even had the time to add anything more to my already full "plate." Sometimes, when you least expect it, a life-changing decision is made for you.  Since last May, when Dominic made his First Holy Communion, I have been praying and hoping that maybe one day in the future there would be a Mass available for special needs children and adults. I wanted to create an environment where no one felt "different" and EVERYONE was welcome. Since I joined a disability ministry earlier this year as the program director, I had been working on making sure that would happen. 

This past Sunday afternoon, we held our first Mass, the "inaugural" event for the ministry.  I knew it wouldn't be perfect, but I also wanted to set the right tone and standard. One of the moms coming with her two special needs sons had requested that they be part of the Mass. She and I had communicated by e-mail several times before last Sunday, we were just about as prepared as we could be. I was filled with a nervous apprehension about how everything would go. Around noon, people started showing up. We had two gentlemen in wheelchairs and a bus full of adult men with developmental disabilities. With each new person that came through the door, my excitement built. When I walked in behind the priest and looked around the chapel full of people, I really had to stifle my tears. To have wanted something for 11 months and finally see it happen, was an incredible feeling. There simply were no words to describe it. After the Mass, we all went down to the dining room and had lunch. Every person in the room had a smile on their face and were talking to their neighbors at their table. When the group of young men were getting ready to leave to go back to the residential facility where they live, one of them came over to me, told me bye and then hugged me. I knew in that instant, if there was ever any doubt whatsoever in whether I have made the right "decision" to be part of the disability ministry, there was absolutely NO doubt. I have never been so sure of anything in my life! To add "icing to the cake," Monday morning, I received an e-mail from the mom who had her sons participate in the Mass. This particular sentence has stuck with me this whole week, "I can't tell you how great it was as a parent watching my kids fulfill their desire to participate in the Mass, I saw them shine." Anybody got a tissue?!?!!?

Wednesday, April 8, 2015

Spreading "Awareness"

When you have a child with Autism, it can sometimes feel like you are always "searching" for just the right "piece" that will make everything come together and "fit" for your child. I read somewhere recently that there are over 500 treatments available for Autism. Wow, hard to know which one to try, huh? What makes things even more difficult is what works for one child may not work for another. There are all kinds of unscrupulous people out there that will claim they can "cure" your child of Autism. Hmm, okay.  I have always been of the mind of trying to "modify" the behaviors that Dominic exhibits as common traits of Autism, like the poor eye contact, "scripting" speech and improved interaction with peers and adults.  We still struggle with asking him "why" he feels a certain way. That has been and continues to be a constant struggle for him. I wish that was a "piece" that fit better in the "puzzle." Okay, I'm switching gears a bit here. The other day I saw a website that was actually selling shirts that said, "I'm Autistic, Not Stupid" and "I Have Autism, What's Your Excuse?" Yikes. I believe there are better ways of "educating" those around us about Autism, don't you think? Being that this is Autism Awareness Month, yesterday afternoon, I had an incredible opportunity to be interviewed  about what its like to be a parent to Dominic.  First and foremost, I wanted to let the wonderful gal that interviewed me know that he is just like any other 10-year old boy, except he just so happens to have Autism.  I wish when people met a child or adult with special needs that they could look past the disability and get to know the person first. Wouldn't that be cool? I think about the amazing and awesome people that I would have never met in a million years if Dominic didn't have special needs. I like to think that each "piece" of  his "puzzle" represents a person that has helped our family. Let's just say, we have a HUGE puzzle! As I have said before, when you are parenting a child or adult with special needs, it affects the ENTIRE family. I felt so blessed that I was able to be interviewed and share my opinions yesterday. If I can help just one person out there feel less alone, then I will be a happy lady. Okay, back to those two shirts I was talking about earlier. I don't know about you, but I think this is a much better way of spreading "awareness" about two things I am very passionate about - Autism and the disability ministry that I am ecstatic to be a part of!!

Tuesday, March 31, 2015

Why Having Friendships Are So Important

When I moved to this area over 13 years ago, I knew absolutely nobody. I remember going to PTO meetings at Lauren's school and literally saying, "hi, I just moved here!" Think back to high school - wasn't it REALLY important to have friends? Well, in my opinion, as we get older, I think having friends are even MORE important.  So, what does it take to make and keep friends? Honesty and loyalty are my two top criteria. I want a friend that always has my "back." They are always looking out for your best interests, will tell you if you have spinach in your two front teeth and will never hesitate to think you are an amazing baker!!

My husband's name for me is "Honest Abe," yes, like Abraham Lincoln. I can not tell a lie, that's why I don't play poker!  A good friend will always be loyal to you 100% of the time, not just sometimes or when it suits them, but ALL the time. To keep friends, we need to offer support and keep an interest in what the person has going on. If we always talked about ourselves, wouldn't that be a bit of a one-sided friendship?!?!? One thing that I recently discovered. Even if you haven't talked to a friend in a while (like several years), many times you are able to pick right up where you left off. It has been so cool to "reconnect" from my friends from my childhood. We now talk about getting older, our kids and our aging parents.  How about when a friendship "breaks up?" That happened to me a few years back and it was truly devastating. It took me months to get over it.  I finally moved on, but I no longer have a friendship at all with this particular person. It's probably better that way! When you find a good friend, consider yourself truly blessed.  I love meeting new people and am continually forming new friendships!  Can one ever have enough friends? In my opinion, no!