A family member reached out to me this morning for some advice. She has a daughter very much like my own. She is about five-years-old (still in pre-school) with a mood/behavior disorder and high functioning autism.
Last night, my family member took her daughter to her first soccer practice. Shortly after arriving, she had a melt-down. It was not as severe as some, but she was quite loud, and she did do some flapping. In the midst of this, my family member heard another parent remark, "Oh, we have one of those on our team." You read that right, one of those. My family member did not react to the hateful words, choosing to just get out of there as quickly as possible.
I was livid! And heartbroken for my family members.
I was at work, and so, I shared the story with some of my co-workers as we were leaving for lunch. I was certain they would all be as furious as I.
Some weren't. Some said they would have probably made the same remark. They said they wouldn't just say something like that if a child was having a meltdown though. They would also say it if a child was exhibiting poor skills on the field or didn't want to get dirty. Or any number of reasons. I questioned them, asking, "You would seriously put down a five-year-old in front of the child and/or his or her parent?"
The answer was yes.
I could feel my eyes fill with tears, and I had to stop talking. The subject was changed, and we carried on with our lunch plans.
But I was hurt. And very, very sad.
After lunch, one of my co-workers asked me if I had been upset by their comments, and I, generally very non-confrontational in nature, said, "Yes, very." We discussed the issues a bit more.
I told her that the conversation at lunch had solidified my resolve to keep fighting for awareness and acceptance of children with special needs. She asked, with genuine curiosity, what awareness and acceptance could do for kids like mine. I told her that I am hopeful that these children will be treated with kindness, compassion, patience, and understanding. I told her that children emulate what their parents do and say, and if a parent feels that it is acceptable to say something negative to or about a child that is different than his or her own, his or her child will grow up doing the same thing.
I don't think our conversation changed her mind on the topic. I do appreciate her willingness to listen to me though. I know that she did not want me to be upset; we just have a difference of opinion.
It's funny though...a couple of days ago, I was sent information about the Dallas Stars having a charity night with free tickets for families with special needs children. I told the girl who sent me the information that I was so grateful that awareness of families like mine has led to companies reaching out and offering special opportunities to experience events that they never would have before. And it is true. Movie theaters often hold special viewings for kids with autism or sensory processing disorders. Museums have special events for kids with autism. A local organization held special Santa visits away from the hustle and bustle of the mall this past Christmas. The list goes on and on.
Awareness is spreading. Acceptance though? I think we have a long way to go. And for that reason, for my children, for the millions of special children and families out there, I will not give up.
Today, I learned that I must keep fighting.
I love the movie Willy Wonka & The Chocolate Factory. It is a movie I've seen more times than I can count, and over the course of the last week, I've had the phrase, "Strike that! Reverse it!" replaying in my head, over and over again. If you've forgotten or don't know what I'm referring to, here's one example of its use in the film:
In a moment of frustration last week, I created a rule that my kids had to read to earn video game play time. (If you're interested and didn't read the last blog, click here
.) After spouting out the new house rule, I immediately knew that I should take the words back. I sought feedback from others, and they validated my uneasiness with the rule. Reading should not be a chore. I want my kids to love it, not dread it.
I needed to strike the rule and reverse it! And I did.
Tom and I decided, instead, to greatly restrict the play time. I thought we had been doing well with it, but it was obvious we had not. We did not decide to take the game time completely away during the school week but did leave that option on the table should it become necessary.
I also was very fearful that I had planted a seed in their heads that reading was not enjoyable. I wanted to dig that seed out immediately. So, on Monday evening, I decided to have some mother-son-bonding time with Troy. I decided I'd read to him. I told him to go to his room and bring a book back. He said okay and walked out....and never returned. Fifteen minutes later, I realized I was still waiting. I called his name, and when he entered the room, empty-handed, I asked him what he was doing. He told me watching TV because "books are lame." I almost fell off my bed! He got a lecture from me! I told him that I would not have filled our house with books if I did not feel that they were important. Mostly, though, I told him disobedience was not okay. Further, I told him that I had wanted to read to him.
I was heartbroken. I feared that I had done irreparable damage.
The next morning, the first words out of his mouth after I gave a cheerful "Good morning!" to him were, "I'm sorry about last night, Mom." I told him that it was okay and gave him a hug.
After dinner that night, I asked him if I could read to him, and he gave an overly enthusiastic, "Yes!" and ran to get a book. I knew he was doing it to make me feel good after the previous night's events. He's a very sweet child. Laura joined us, and we read from a book I had given him for Christmas, Different Like Me: My Book of Autism Heroes
On Wednesday night, we did it again. We read about a few more people in the book, and then, we looked them up online. For example, one was a painter, so we looked at some of his paintings. We watched some videos on YouTube. I felt like I needed to tread very lightly because the Troy/Books/Reading relationship was obviously very fragile. I didn't want to force anything.
A friend at work brought a box-full of books to work on Thursday. I took a large chunk of them and brought them home. Laura is currently extremely obsessed with dentistry. One of the books was about teeth and dentists. She was so excited! Koby loves Sponge Bob; about ten of the books were Sponge Bob books! He couldn't decide which one to read first and was angry when Laura dared to touch one! Troy was elated when he found a Sponge Bob book designed for older readers. To see them excited about books again made my heart flutter!
Near bedtime, I decided to ask them to join me for a family read-aloud. However, when I walked into Laura's room, this is the sight that greeted me:
I snapped a picture and quickly backed out of the room!
The work is not done. We spoke to the psychiatrist about the situation at their appointment the other day, and she told us that video games can easily become problematic for all kids, but even more so for kids like Troy.
Still, I believe that the love of reading and books has not left my son. The picture above proves that there is still a spark remaining.
Thank you to those who gave me advice after last week's post. The saying goes that you should always follow your gut. My gut told me I was making a bad parenting choice, but the advice and support I received from so many here on this site and also on Facebook and in personal conversations helped me follow my instincts that I did, indeed, need to strike that and reverse it!
Happy Reading, Everyone!
I don't make New Year's resolutions. I know I'll never keep them, so I usually skip that tradition. This year, however, is different! I have made a New Year's resolution--and made it six days early! My resolution is to update my blog more frequently and to do so more authentically.
As you are probably aware, I have published a children's book about autism. I have only written a handful of posts, and they have centered around autism. It made sense to me to write about autism on this blog. The truth is that, of course, autism causes challenges in this household, but mental illness causes many more.
A friend at work remarked to me the other day (he didn't know about my blog) that I should write about my life. He said, "It could be really therapeutic for you, and it could help other people at the same time." While I agreed with him on both points, I really felt that this page should deal with autism only. The conversation has popped up in my head repeatedly though.
Then, a family member who has a child with issues very similar to my own daughter's wrote a post on Facebook, detailing her frustration at some recent behavior struggles. Friends and family members quickly responded--and the comments were, in my opinion, without compassion or understanding. My family member was told that her daughter would grow out of it, was just doing it for attention, that she needs a good paddling, etc. I was horrified. Now, I know that they meant well, but it was clear that they did not understand the context of her post.
This situation gave me the push I needed for this decision to write more. You see, autism is gaining more acceptance in our society. Mental illness is not.
It is my sincere hope that by sharing my journey, I can help other people dealing with similar circumstances feel less alone. It is also my sincere hope that people not dealing with similar circumstances can learn about what families like mine face and perhaps gain some compassion.
I am not an autism expert; I am not a mental health expert. FAR from it! I am a mom. I screw up every single day. I worry, I cry, and I panic about the future. I will never pretend I have all the answers.
Still, I feel like I need to do this. I pray that it will make a difference in the life of at least one person. This is a resolution I plan on keeping! Happy New Year!
The official release date of Why Won't He Look At Me? is in mid-December. However, I was able to purchase copies of my book from the publisher early.
The shipment arrived yesterday, which was quite the surreal experience. Tom e-mailed me the picture above when the package arrived. I could feel my heart flutter and my stomach drop as I stared at the image.
I put a message on Facebook to let people know that the book is now available! The response was emotionally overwhelming. I was so touched that so many people placed orders. I was humbled at the number of people who bought several copies.
I stayed up until 12:30 a.m. to sign and package the first book orders. The climax of this long, publishing process hit today when the first several orders were mailed out.
With those first mailed packages, it is starting to sink in that there is nothing more I can do to the book. It is finished. It is out there. There is NO turning back.
I am terrified, absolutely terrified that people will hate it. When I confided my fear to some co-workers this morning, one remarked, "Haters gonna hate!" It cracked us all up. I've thought about it throughout the day though. It's true. I'm sure there will be some who will not like the book, and I can't do anything about that.
My fears and worry are not going to stop me. My hope for the book's impact is stronger, much stronger than any trepidation.
So, with a prayerful, hopeful spirit, I'm releasing the book to all of you and the children you will share it with. I hope it helps to open dialogue between children and you, their parents, grandparents, aunts, uncles, caregivers, teachers, or counselors. I hope it creates opportunities for children to ask questions. Empowered by their new-found knowledge, it is my fervent hope that this will lead to your children being accepting and kind to their friends and family who have autism.
Thank you for helping to make this dream a possibility.
I have been asked several times why I wrote my book. Many assume that it is because I have a child with autism. Actually, It started with a class project. I was working on a Master's degree at the University of North Texas in Autism Intervention. I was assigned the task of coming up with a way to spread knowledge about autism to the public.
I had read that kids with autism are bullied at an alarmingly high rate. (Click here
for a CBS news article on the topic.) It dawned on me that perhaps if kids were better educated about the disorder, the bullying rate might go down. So, I decided to write a children's story. My professor gave me a great grade, and after some thought, I decided to throw my hat into the publishing ring.
The process has been long and full of many ups and downs, but also very exciting! I'm terrified that people will not like it. I'm hopeful that people might. Most of all, I hope and pray that it keeps at least one child from being bullied.
You may have read or seen on the news the horrible letter that a disgusting human being put under the door of a home with a child with autism. If not, I have posted it below (If it's too small or you'd like to read more about it, click here
.). After wiping my tears away, I felt a renewed sense of purpose. It is true that autism is better understood and accepted today than ever before, but this hate-filled letter demonstrates that there is a long, long way to go.
I know it's cliche, but knowledge is power. It is my sincere hope that my book will help educate children about autism and, ultimately, decrease the bullying epidemic.