Tuesday, February 17, 2015

If You Build It, They Will Come

This time last year, Dominic was in the midst of finishing up his two years of special needs religious education classes and was preparing to make his First Holy Communion. I was shopping for church shoes and a shirt and tie. Since we have no family here, any celebration afterwards would be small, so I knew that wouldn't require too much planning. When the big day arrived, it was a moment captured in time, that I will never forget.

Shortly after Dominic made his First Holy Communion, I became co-chairperson of a group called, Our Lady of Grace Special Families Ministry.  The ministry has a bowling group that is in its ninth year. I knew in my heart, though, that the ministry could be doing so much more. I really, really wanted a Mass for special needs children and adults. I had become, what you would call, a "dog with a bone." I wasn't about to give the idea up!!! Well, about three weeks ago, my "faith" had begun to waver a bit and I was beginning to think that the Mass might not happen, ever. Imagine my shock, when I looked at my e-mails the next morning and found a forwarded e-mail talking about a group called, All Faith Ministry for disABILITIES. Their mission is to help serve people of all faiths with birth or life incurred disabilities and their families. I knew that this was a group I had to be involved in. Well, to make a long story short, I have been given an incredible opportunity to help with the "building" of this much needed ministry. Oh, and guess what? A Mass for special needs children and adults is scheduled for April 12!!!  The other co-chairperson of the Our Lady of Grace Special Families Ministry sent an e-mail out to the bowling group letting them know about the "special" Mass yesterday at 10:48 a.m. At 11:03 a.m., I received our first response back!! Glad I didn't give up the "faith." It is being "built" and I know they will be coming.

Sunday, February 8, 2015

Where I Want to Be

When Lauren left for college last August, neither of us knew how our relationship would change. She and I are very close, but respect each other's "space."  While there have been a few "tweaks" to our relationship, we are still just as close. Last Friday, I drove the ninety miles to visit her and we spent the day together - just the two of us.  With her busy schedule and mine, it took a few weeks of planning. We had so much catching up to do that I don't think either of us stopped talking the ENTIRE time. I recently discovered that there is a mall just 15 minutes away from her campus. I have been to some big malls in my time, but this one had a full size carousel in it! When we lived in Maryland, there was a park with a carousel that Lauren and I would ride frequently. I asked her if she wanted to go for a ride, but she declined my offer :) Throughout the day, I kept calling the hubby saying, "we are still shopping!" More than one time, Lauren said, "I'm sure you would rather be doing something else." I told her it was fine. I kept thinking to myself, there was nowhere in the world that I would rather have been last Friday than with Lauren. After a quick trip to the grocery store to get her a few more items, I dropped her off at her dorm about 8 p.m. I called the hubby one last time and said, "I'm on the way home!" In a little over two months, Lauren will be done with her first year of college. She loves to travel (she took her first plane ride with me when she wasn't even two years old) and talks about wanting to study abroad. Believe me, I "treasured" last Friday like a "rare gem." I 'm glad that Lauren and I took a step back from our hectic lives as a college freshman and stay-at-home mom respectively, and made the "time" for each other.  I love you very much, my sweet and only daughter and am so proud of the woman that you have become.

Tuesday, February 3, 2015

Why I Don't Mind Having One Less Band-Aid

Last Friday afternoon shortly before Dominic was due to come home on the bus, I popped into my local Kroger to pick up a handful of items for the weekend.  As I was putting the last of my things onto the conveyor belt, I overheard the gentleman who was bagging my groceries say to the clerk next to him, "can you get me a Band-Aid?" She answered back, "okay, I'll get you one in a minute." He was beginning to get upset about the fact he needed one and didn't have one. Since I was running late, I guess I could have just finished bagging my own groceries and gotten out of there, but that's not my "style." I always have at least one Band-Aid on hand at all times, so I pulled one out of my purse and said, "do you want this one?" He seemed very relieved and said, "yes, could you put it on my finger?"  I LOVE the fact that my local Kroger has hired a handful of special needs individuals to work at the store. As I finished putting the Band-Aid on his finger, he told the clerk, "we should buy her a candy bar!" I told him, "no, that's okay." The clerk was telling me that he has to ride a bus to get to work, by himself.  As I walked to the car and loaded in my groceries, I had a "flash forward" moment to about eight years from now, when Dominic will be 18 - an ADULT.  It's so hard to predict the future for him. There was a time when I didn't think Dominic would ever be potty trained. Yesterday, I was ready to have a party, because he said, "I have to go potty!" I have been having to "prompt" him to go every two hours, so him, telling me he had to go was a HUGE step for him.  I feel like every day we take a few more "steps" towards him being more independent. I think about his future more and more as he gets older.

Will he go to college? get his driver's license? have a job? live on his own? One thing I have learned as I get older, you can't assume anything in life! I'm sure my bagging "buddy" has a mom out there. I know that I will never probably meet her, but I hope she knows what a sweet and an awesome son she has and how proud she should be of him. Who knows, maybe one day she'll be shopping at the Kroger and Dominic may be bagging her groceries and he'll need a Band-Aid.

Tuesday, January 27, 2015

Eye-Opening View into Dominic's "World"

Before I had Dominic, I had absolutely NO CLUE what Autism was. As I have mentioned before, my only frame of reference was the movie, Rain Man.  I thought all children and adults with Autism lived in institutions and were non-verbal (and, if they did talk, it was to themselves). I also thought they were unable to show emotions. Wow, what a different "view" I have now. I think if I could put the past eight years since Dominic's diagnosis into two words, it would be, "eye-opening." I have learned that not all children and adults live in institutions. Some do, but a lot don't. Yes, there are children and adults that are non-verbal, but that doesn't mean they can't hear. Lauren told me once her thoughts on Autism. She said, "mom, every child is "in there," you just have to find a way to reach them." What a profound statement, wouldn't you say? I have had people ask me whether the "window has closed" for Dominic. The "window," meaning the "window of opportunity" which many parents of children with Autism, see as a limited amount of time into which to "pull" your child out of the "world of Autism." Well, I can only speak for myself, but I can tell you with almost complete certainty, Dominic's "window" is wide-open and will continue to stay that way. I advocate for him all the time. As a parent, whether your child has special needs or not, isn't that what we do? Okay, I have saved the best for last. Emotion. Yep, at one time, I thought all individuals with Autism were unable to show emotion or understand the feelings of others. While some children and adults do "fit" into that category, there are quite a few that don't, Dominic included. When my mother-in-law passed away back in January of 2011, it was a tough, tough time. The only way we could keep Dominic quiet during the funeral Mass was letting him play with a Game Boy. Yes, I know, some would consider it inappropriate, but at that time, it was my only option. Last week, Dominic said to me, "Grandma lives in Heaven, I miss her." Wow. You could have knocked me over with a feather. While he has said, "Grandma lives in Heaven," multiple times in the past few months, last week, was the first time he said that he "missed" her. You can't tell me that he doesn't remember that time.

What I have always thought about the way Dominic thinks, is this - he hears everything, but filters out what he doesn't want to hear and keeps the rest "filed" away for use at a later time. This past Saturday, when we were in church, there was a little baby crying. Without missing a beat, Dominic said, "baby is sad." I told him, "yes, the baby is sad."  This morning, shortly before Dominic's bus came to pick him up for school, he came over to me and while my back was turned, he hit my arm. He was just playing around, but sometimes, he doesn't know his own strength and it startled me. I said, "ow, that hurt!!" The first thing out of Dominic's mouth was, "I'm so sorry, Mommy!" He got himself so upset that he started crying. He even said, "feeling sorry with himself." Dominic kept repeating, "I'm sorry," over and over again. I reassured him that I was okay and that I knew it was an accident. But, I also told him that he shouldn't hit. Dominic continues to "open" my eyes a little wider each day into his "world" and I wouldn't have it any other way!!

Thursday, January 22, 2015

Winning Fair and Square

A few weeks ago, the hubby, Dominic and I went bowling.

We played two games. Dominic won the first game and the hubby won the second game. We didn't "let" Dominic win the first game, he beat us, "fair and square." When you play a board game with your child, do you "bend" the rules to make it easier for them to beat you? This past weekend, Lauren was home visiting from college. I asked her if she wanted to play a game. I wanted to play Yatzhee or Trouble, but she said she wanted to play a game that was based on skill, not luck. I guess I'm the reverse. We ended up playing Scrabble. That game is a little bit of luck and a little bit of skill, so it was a good compromise. I like the old adage, "it's not whether you win or lose, but how you play the game."  I think sometimes as parents, it's easy to get so caught up in winning, that we don't teach our kids how to lose. I will never, ever forget a soccer game where I was the goalie. I was probably like 15 or 16 years old. The team we were playing against was clearly much better than we were. I remember a parent on the opposing team yelling something on the sidelines like, "come on, we can score a goal on her, she isn't very good!" Wow. This happened over 40 years ago and I STILL remember it.  It's great to win, but isn't it also okay if we lose? I think it is so important to teach good sportsmanship. Okay, hold on, because I'm hopping onto my "soapbox."  Not every child wins a ribbon or trophy, but shouldn't they get something for trying??  Do you see the big smile on Dominic's face? The yellow certificate is a "participation" certificate.

I think ALL kids should get one of those types of certificates, whether they have special needs or not. Whether your child does music, art, drama or whatever else they choose, my opinion is that they should at a minimum, get some form of recognition for all of their hard work. Whether that means their name is called out over a loud speaker at a sporting event, receiving a "participation" certificate or just having their name listed in a music, art or drama program. Okay, I'm hopping back off my "soapbox" now!! What about you? what are your thoughts? Should your children get "participation" certificates or ribbons? Have you ever "let" your child win when you've played a game with them, just to make them happy? or, do you always play "fair and square?"

Friday, January 16, 2015

Why I Write About Dominic's Autism

When I first got the diagnosis of Dominic having Autism back in 2007, I spent two weeks feeling sorry for myself. I think it's extremely important to go through that process, so you can move forward. During that two week time frame, one thing I really wish I could have read was an article or blog posts about having a child with special needs, what it was really like and how it affects the entire family. I felt so alone during those two weeks, like I was the only one out there with a child with Autism. I didn't want to read a blog that was negative, but rather one that was inspirational and positive. Before I started writing my blog in July of 2011, I had many doubts. Would anybody read it? Would I get a bunch of negative comments saying things like, "are you some kind of expert?" or "who do you think you are writing a blog!?!" Since I have a business degree and not a journalism degree, I wondered if I would have enough "material" to make a blog interesting to read. Well, I needn't have worried about that. Good grief, I'm involved in so many things at any one time and have my hands in so many "pots," that I could write posts three times a day! Anyways, as this blog has evolved over the past three and half years, one topic I write about often is Dominic's Autism.

I always try to stay positive and I hope that I inspire other parents of children with special needs to just keep putting one foot in front of the other and keep on moving forward. If you don't know anyone with special needs or Autism, then I hope you have enjoyed getting to know my family better and what it's like for us. I hope when I put a post on where I talk about Dominic, that another parent out there in the same situation can say to themselves, "okay, I'm not alone after all!" or maybe they find what I write amusing and it puts a smile on their face. With 1 in 68 children being diagnosed with Autism in 2014, chances are you know someone who has a child with Autism or your own child has Autism. Earlier this week, I read this comment from a parent who has a child with special needs in regards to my recent post about Dominic and I having a conversation:

We are getting closer to this every day, I can't wait!

Cool. Now, a comment like THAT is exactly why I write about Dominic's Autism!!!

Thursday, January 8, 2015

Conversations with Dominic

When I heard Dominic running down the stairs and into the family room at 6:30 a.m. this morning, my first thought was, what in the world is he going to do with the two hours before his bus arrives? Would he play with his toys? the i-Pad? rest on the couch? When I asked Dominic what today was, he told me, "riding a bus to get to Kinawa (his middle school), pizza!" Yep, every Thursday I let him get hot lunch, which always includes pizza.  If Dominic had his way, EVERY day would be pizza day :) LOL. Next up for him was breakfast. I told him I would be making homemade waffles and would let him know when they were ready. When his "order" was up, he came dancing into the kitchen to get them. He then remarked, "Grandma lives in heaven." Well, yesterday was the four year anniversary of when my mother-in-law passed away.  It was tough not to grab a tissue and dab my eyes. Next, Dominic said, "Lauren?" I told him that she wasn't here. He then said, "Lauren is at college!" Yep, she went back to start her second semester this past Sunday. Dominic then told me, "Miss Mary on Saturday!" Miss Mary is his private speech therapist that we started seeing during the summer of last year and we continue to see her on Saturday mornings. I told him, "thanks for reminding me, I need to write that down on the calendar!" There was a time in the not so distant past, when we would have to "guess" what he was thinking and wonder if we would ever be able to carry on a conversation with him.

There was no guessing this morning as to what Dominic was thinking, that's for sure - he let me know all about it! I can't wait for him to come from school this afternoon and "tell" me all about his day. I'm sure at the top of the list will be how much he enjoyed his pizza at lunch!