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!

Friday, March 27, 2015

This Is Why I Will Never Stop Advocating

This morning, I saw a video that an Autism mom had posted on Facebook. After I watched it, I had two emotions - sad and mad. This particular mom had listened to a famous comedian on the radio who decided that it would be hilarious to make a special needs person part of his jokes. It's taken me a few hours to settle down enough to write this post. First of all, it is NEVER acceptable to make fun of special needs children or adults. Those children and adults have families and when you crack jokes, it hurts those families.  I felt physically sick this morning after hearing what this comedian had said. Second, there are many, many non-verbal children and adults out there. Back when Dominic had less language, he would sometimes say, "oh, oh," because he was trying to talk. I had someone ask me once in a sarcastic and negative tone of voice, "what does oh, oh, mean?!?!?!?!" After about 15 seconds of composing myself, I calmly looked this gentleman square in the eyes and said, "he has some speech delays." Third, this comedian's jokes were taking place in a church.  For those of us who take our special needs children and adults to a place of worship, we should be welcomed with open arms, not with disdain. I recently became the project director of a special needs ministry where I live. It will be one of my primary "jobs" to change the way we "see" others with disabilities. I want to become a "voice" for the "voiceless." I know that I am lucky, because our church has always embraced us, but there are many other families with special needs children and adults that have not been as fortunate. I plan to advocate not just for our family, but for ALL families out there, regardless of their religion. Fourth, there are still misconceptions of those with disabilities that need to be changed. I had someone who I am extremely close to, just this week ask me, "can Autistic children learn how to read?"  Dominic is in the fifth grade, but probably reads on about the third grade level. He has gone from throwing a book across the room, to asking me every night to read him a story. When I found out my local library didn't have a "storytime" for children with sensory issues or special needs, I wrote several e-mails to the person in charge of the programs, over the course of a few years, just to keep the idea out there. I am happy to say that there is now a "Sensory Storytime" program being offered. It has definitely been a "struggle" to "educate" this particular person on what children with Autism can do.

 Dominic can put together puzzles with over 500 pieces.

He can tie his shoes.

Lastly, it so incredibly disrespectful that some comedians feel its perfectly "acceptable" to make those with disabilities the "punch lines" of their jokes. Up until this morning, I was a fan of this particular comedian. Not anymore.

Tuesday, March 24, 2015

Well Wishes

When I was growing up, there was a couple that lived right next door to us, MaryAnn and Harold. We were not related by "blood," but by "love." This is a picture from my 18th birthday and MaryAnn and Harold are standing behind me. My little sister is to the right of me :)

The "door" to their house was always "open," and she loved to bake!!  It was a sad day when they moved to Iowa, but I did manage to visit a few times!  A few months back, I found part of a card that had a message from MaryAnn. It was from the Christmas of 1995. She had wrote a note on part of the card. I guess I'm a bit of an "antique," because even though I communicate by e-mail a lot, I still think handwritten notes are pretty cool :) That must have been why I saved this particular one!

She was telling us that she, "hoped it was one of the very best and wished she could be with us to help celebrate." MaryAnn and her husband had a very long and loving marriage. When MaryAnn was diagnosed with pancreatic cancer, she fought the good fight. She never, ever, let on how really sick she was. Sadly, both MaryAnn and Harold have both been gone over ten years. I so wish she could see how happy I am with my husband. This December, we will be celebrating 20 years of marriage!!



Tuesday, March 17, 2015

A Trio of "Tissue" Moments

Last Saturday, Dominic had a session with his private speech therapist. We had not seen her since January, due to circumstances beyond our control. I wasn't quite sure how he would do, given it had been so long since he had seen her. He definitely didn't have very good eye contact with her, but during the session he did say, "I love you, mommy!" Okay, tissue moment #1 (for both her and I).

Getting Dominic potty trained was definitely one of the biggest parenting challenges I have ever faced. Even though he is heading towards being 11 years old, we still have to "prompt" him to use the toilet every 2-3 hours. I'm ecstatic that he will go "on command," but in the back of my mind, I know he needs to be able to recognize that "feeling" of needing to go. Well, in the past week, he has told me three separate times that he had to go! Yep, tissue moment #2.
Dominic has been to a barber shop a grand total of two times in his entire life. We decided many years ago, that I would be his personal "hairstylist." I have a business degree, not a cosmetology degree, so the haircut is not always even or thinned out enough, but I do a halfway decent job. When Dominic was smaller, I would put him in his removable booster seat and strap him in. As he has gotten older, we have "graduated" to sitting on the floor. Believe me, there have always been tears, sniffling, whining, running away (sometimes all four) involved. No matter how many times I reassured Dominic that I wasn't going to hurt him, it didn't matter. I don't use an electric trimmer, so I know it's not a noise issue. Today, since he had a scheduled day off from school, I told him that he would be getting a haircut - it was even put on the "schedule" that I write for him everyday. I had a "light bulb" moment back a few haircuts ago. I used that old parenting "trick" of "first this, then that." The "that" in this case, being a meal from Burger King. We rarely eat out, so for him, it is a very special treat. I don't normally like to reward Dominic with food, but since I only cut his hair about every 8-10 weeks and I usually have a good coupon, it makes sense. We didn't get around to the haircut until about 12:15 this afternoon. He did absolutely amazing and in no time at all, we were done. Dominic was very patient and after I brushed some of the excess hair off of him, I told him to go put on his shoes. We drove down to the Burger King and got in the drive-through line. I ordered him some nuggets and fries and then as we were pulling forward to pay, he said, "thank you mommy for cutting my hair!" He has never, ever told me that before! Tissue moment #3. Good grief, do you think maybe I need to start carrying around a BOX of tissues in my purse?!?!? 

Monday, March 16, 2015

First Year of College

Exactly one month from today, Lauren will be done with her freshman year of college classes and preparing for Finals. Good grief, didn't she just graduate from high school?!?!?!

What's that old saying? Time flies? Yikes, it's been moving at breakneck speed lately! I have to admit, it's been hard not to be able to see Lauren in person every day. I don't think, even now, in the middle of March, that I am "used" to it. I know that Dominic really misses his sister.  He said, "La-La" (his nickname for her) no less than 25 times last week. I think it's still hard for him to wrap his mind around the fact she isn't around.

Lauren and her older brother are close and on our recent trip to Jamaica, he taught her how to snorkel.

It has been awesome to watch Lauren "grow" this first year of college.  She has "bloomed" like a beautiful flower and I couldn't be more proud. Keep up the good work, my sweet girl!