Our Pearl Story (Part 5) #HopeChangesEverything #BlogParty2011

Well, we're almost there...just a couple of posts to go...but even these are still just the beginning for those of us walking this journey with our Macey-girl.

After the whole nightmarish episode with DFACS, I spoke with Macey about how big of a deal this was. She had no idea. She was just telling her friend about her "food shelf," then the friend told a teacher who thought it sounded awful. The teacher told the counselor. The counselor called DFACS. I still would have appreciated a call to us first--this would have really cleared things up; but I'm thankful that we were able to get it all dealt with in a timely and fairly non-traumatic way.

I asked Macey to think about how she felt about what had happened and she said, "You know when you're washing dishes and you have that one dish that doesn't want to get clean; and no matter how hard you scrub, there's this place on it that won't scrub off?" I said, "yes," and she replied, "I feel like that dirty dish."

For 13 years I was getting to know Macey to the best of my ability, but I really didn't know why she acted the way she did or why things would anger her so much or why she could experience the exact same situation as the rest of us in the family, but be affected by it and remember it completely differently than the rest of us. Again, I was praying for God to redeem her filter so she wouldn't have a wrong view of the world, of God, of her family and friends, or of herself.

Around Macey's 13th birthday, my sister sent me an email sending me to a link about a form of Autism called "Asperger's Syndrome." I can't believe I had never heard of it before then. With all the info out there and as much as I study and read, I can only surmise that for some reason, God withheld that information until He knew we were ready to receive it. Up to that point, I had always thought I was just dealing with a strong-willed child who also had a hearing impairment--which would explain some of what life was like with Macey, but still did not give us the clearest picture.

I began to research Asperger's Syndrome, which also typically includes Sensory Perception Disorder, and as I researched it, some of it seemed to fit Macey, but not all of it. I talked to one of Macey's teachers who insisted she knew all about Asperger's and that it was her belief that Macey did not have this. So, I shelfed the topic, and went on with life--struggling with Macey's perceptions, reactions and confusing behavior...until this past spring.

I was meeting with Macey's teachers for her annual IEP (Individualized Education Plan), which she has had since preschool due to her hearing impairment. As the teachers, counselors, and I discussed Macey's struggles and the desire we all had to help her to the best of our abilities, we agreed to do some more testing for possible learning disabilities.

As I left that meeting, I headed to the gym, and fell apart in the car. I wept for my child who I wanted (and want) so desperately to be equipped to love her life and to find success in relationships. I teach my children that if you can be successful in relationships, you'll be successful in life. But if you never learn to be successful in relationships, you'll never be successful in life. I'm so far less concerned with the grades on a report card than I am with how my children learn to relate to other people. And, Macey was struggling with both.

I had not thought about Autism or Asperger's Syndrome in months. And, honestly, out of nowhere, the terms came to my mind. I began on that drive to the gym to talk to God about this possibility, and asked that He show me if this is truly what we were dealing with. After all, He created her, so He would know, right? :)

Stay tuned....more tomorrow...

(Thank you for reading and sharing this journey!)

Our Pearl Story... (Part 4) #HopeChangesEverything #BlogParty2011

So, I was scrambling to get some work finished since it was the last day of school for all the kids and I wanted to have everything done so we could celebrate and enjoy our evening and weekend together. Because it was the last week of school, and there had been class parties and such, I had let some housework go, with plans to get caught up over the weekend.

And then I noticed I had a voice mail on my cell phone. The phone had not signaled me that I had gotten a call, so I checked the voice mail. It was a woman from our county's Department of Family and Children's Services. When she mentioned she needed me to call her right back, I naturally figured she wanted to talk with me to get information that would be helpful with another child's case--possibly one of the kids in the neighborhood or something.

I never expected to hear what she said when I returned her call. "Mrs. Hendrix, there has been a complaint filed against you and I need to come to your house as soon as possible." Time stopped. I was horrified and shocked. I couldn't imagine anything that could have prompted anyone to file a complaint against me. She offered to come the following Tuesday after the Memorial Day Weekend break, but my heart and mind couldn't handle that long of a wait to get things resolved. I asked her to come out that day. Her tone and her words sounded like I had already been accused even though I had not had a chance to find out (because she couldn't discuss it over the phone) what I had even been accused of doing.

She came out that day and said, "a complaint has been made about how you handle food in your home." What???

This went from being frightening to being really odd. She went on to explain, "We were told that you put food on certain shelves with your children's names on them, and if your children don't do their chores, they don't get any food. We were also told that you no longer cook meals for your children for dinner." All of a sudden, this was starting to make a little more sense...and when it sounded like this, it DID sound awful. So I simply told her what I could imagine happened:

"This came to you from Macey, right?"

"Yes."

"And she mentioned to someone that we have given each of the kids a shelf with snacks (food) on it and we put the food onto the shelves each week and they're only allowed to have those replenished once a week, right?"

"That's what we were told."

"And Macey said that I don't 'cook' dinner much anymore, correct?"

"Yes ma'am."

I then went on to show her our two refrigerator/freezers full of food, plus two pantries full of even more food--and this was on the last day of the work week, meaning we would be grocery shopping the next day. I showed her the shelves with the kids names on them, and I explained that we put sugary treats, snack cakes, and the like on those shelves each week so that the kids have access to their own treats. We explained that this became necessary because Macey didn't understand that it was unhealthy to eat an entire box of Little Debbie snack cakes in one day-not to mention it was inconsiderate to take them all and not share with her brother and sister. This was an attempt, which has actually worked pretty well, to teach her to respect other people and their boundaries in addition to expecting others to respect hers.

I went on to tell her that they had plenty of other healthy snacks in the refrigerator and in the pantry (which she saw for herself), but that these shelves were specifically for things for which a parent wouldn't want their child to have an unlimited access.

I explained that we were teaching our children that since we're all part of the same team, we need to help each other out with household chores, so if they didn't help out with their chores, there was a good chance someone else (the grocery shopper) might not get to purchase those extra things each week since he/she would have to spend that time taking care of someone else's unmet responsibility.

As for cooking, Macey was right. I don't do a whole lot of  "get the pots and pans out and make a whole dinner from scratch" anymore like I did years ago. This is a season in our lives that makes that nearly impossible. As the girls entered high school and middle school and nights became filled up with band practice, karate, Church 4 Chicks, etc, I chose to do less cooking and more warming up, or purchasing dinner. We eat dinner, of course, but I was doing less "cooking."

The case worker changed her tone completely, and explained that as she spoke with my other children, what they said lined up perfectly with what I was telling her. She also said, "Macey really needs to understand how big of a deal this is..." When this whole uncomfortable and even embarrassing ordeal was dealt with and put behind us, the real journey to discovering what was really going on with Macey was just beginning. I'm so thankful that my Heavenly Father knew all along, and knew just how to lead us to a better understanding of this precious and wonderful child that He created just the way He wanted her to be...

To be continued...

Pearls...(Part 4)

So, I was scrambling to get some work finished since it was the last day of school for all the kids and I wanted to have everything done so we could celebrate and enjoy our evening and weekend together. Because it was the last week of school, and there had been class parties and such, I had let some housework go, with plans to get caught up over the weekend.

And then I noticed I had a voice mail on my cell phone. The phone had not signaled me that I had gotten a call, so I checked the voice mail. It was a woman from our county's Department of Family & Children's Services. When she mentioned she needed me to call her right back, I naturally figured she wanted to talk with me to get information that would be helpful with another child's case--possibly one of the kids in the neighborhood or something.

I never expected to hear what she said when I returned her call. "Mrs. Hendrix, there has been a complaint filed against you and I need to come to your house as soon as possible." Time stopped. I was horrified and shocked. I couldn't imagine anything that could have prompted anyone to file a complaint against me. She offered to come the following Tuesday after the Memorial Day Weekend break, but my heart and mind couldn't handle that long of a wait to get things resolved. I asked her to come out that day. Her tone and her words sounded like I had already been accused even though I had not had a chance to find out (because she couldn't discuss it over the phone) what I had even been accused of doing.

She came out that day and said, "a complaint has been made about how you handle food in your home." What???
 
This went from being frightening to being really odd. She went on to explain, "We were told that you put food on certain shelves with your children's names on them, and if your children don't do their chores, they don't get any food. We were also told that you no longer cook meals for your children for dinner." All of a sudden, this was starting to make a little more sense...and when it sounded like this, it DID sound awful. So I simply told her what I could imagine happened:

"This came to you from Macey, right?"

"Yes."

"And she mentioned to someone that we have given each of the kids a shelf with snacks (food) on it and we put the food onto the shelves each week and they're only allowed to have those replenished once a week, right?"

"That's what we were told."

"And Macey said that I don't 'cook' dinner much anymore, correct?"

"Yes ma'am."

I then went on to show her our two refrigerator/freezers full of food, plus two pantries full of even more food--and this was on the last day of the work week, meaning we would be grocery shopping the next day. I showed her the shelves with the kids names on them, and I explained that we put sugary treats, snack cakes, and the like on those shelves each week so that the kids have access to their own treats. We explained that this became necessary because Macey didn't understand that it was unhealthy to eat an entire box of Little Debbie snack cakes in one day-not to mention it was inconsiderate to take them all and not share with her brother and sister. This was an attempt, which has actually worked pretty well, to teach her to respect other people and their boundaries in addition to expecting others to respect hers.

I went on to tell her that they had plenty of other healthy snacks in the refrigerator and in the pantry (which she saw for herself), but that these shelves were specifically for things for which a parent wouldn't want their child to have an unlimited access.

I explained that we were teaching our children that since we're all part of the same team, we need to help each other out with household chores, so if they didn't help out with their chores, there was a good chance someone else (the grocery shopper) might not get to purchase those extra things each week since he/she would have to spend that time taking care of someone else's unmet responsibility.

As for cooking, Macey was right. I don't do a whole lot of  "get the pots and pans out and make a whole dinner from scratch" anymore like I did years ago. This is a season in our lives that makes that nearly impossible. As the girls entered high school and middle school and nights became filled up with band practice, karate, Church 4 Chicks, etc, I chose to do less cooking and more warming up, or purchasing dinner. We eat dinner, of course, but I was doing less "cooking."

The case worker changed her tone completely, and explained that as she spoke with my other children, what they said lined up perfectly with what I was telling her. She also said, "Macey really needs to understand how big of a deal this is. She made things sound horrible in your home." When this whole uncomfortable and even embarrassing ordeal was dealt with and put behind us, the real journey to discovering what was really going on with Macey was just beginning. I'm so thankful that my Heavenly Father knew all along, and knew just how to lead us to a better understanding of this precious and wonderful child that He created just the way He wanted her to be...

To be continued...

Pearls... (Part 3)

Thanks for reading these "Pearls" posts and following this latest mini-series. :-)

As Macey continued to grow, there were things about her that were definitely unique. I have told people for years that if I had only had my first child, I might be a pretty opinionated and arrogant parent. It's not that I think Amelia is perfect or that I've parented her perfectly, but it was as if Macey was born with the sole-purpose of making sure momma stays humble! I'll never forget when my first book was completed, published, and printed. I got my first copy in the mail. There really is no feeling quite like it! After all that studying, hard work of writing, teaching the material, re-writing, editing, researching publishing companies, writing some more, and on and on--it seemed like an endless struggle. When it arrived I showed Amelia, and she celebrated with me and said, "Oh Mommy, I am SO proud of you!" Jackson, although only 5 years old at the time, was so happy for me as well (and, in his totally Jackson way, said, "When can I publish MY book?")

I showed Macey and she said, "What does this have to do with me?"And she honestly wasn't trying to be mean or thoughtless. She just wanted to know what my book had to do with her.

From the time of her birth, I knew she loved me. There has always been a very special bond between Macey and me. She didn't warm up much to others at first, and we dubbed her from the start, "Momma's girl." In fact, of my three kids, Macey has never called me "Mommy," always "Momma." I've never doubted she loved me, but I've often doubted whether or not she liked me. (Now, don't get me wrong: I know it's not my job to be liked by my children. I'm just trying to explain something.)

Here are some of the little quirks we noticed:

• Macey likes hugs (sort of) but usually only the ones she initiates. Even today, if I hug her without asking her first if it's okay, she'll flinch and pull away from me.
• She is literal to an extreme (SO many examples of this! I think it has helped me become a better communicator.)
• She doesn't handle change well. (Even something as little --to me--as changing her from being a bus rider to a car rider after school can stress her out.)
• She tends to be very naive and trusting--which, unfortunately, makes her an easy target for kids who like to take advantage of that.
• Every negative emotion tends to be expressed as anger or even rage. 
• If you ask her opinion, she'll give it to you. (Beware! Especially if you're asking how you look in a certain bathing suit. I may never do that again.)
• She is extremely hyper-sensitive to noise, touch, texture, light, etc. (Her bedroom and wardrobe are full of fuzzy, soft, cozy items.)
• She doesn't express herself verbally as well as she can express her thoughts/emotions in pictures--word pictures or drawn. In this, she excels!
• She has a very strict system of organization--it works for her but doesn't make sense to the rest of us.

As Macey entered 3rd grade, I picked up on the fact that her anger issues didn't seem to be anger as much as sadness, feelings of rejection (from kids on the bus, church, school, etc), insecurity, and such. I started using a "Feelings Wheel" (a chart with different emotion words on it) to help her learn how to tell me what was going on inside of her when all we could see on the outside was rage that didn't seem to fit the circumstance.

Something that confused me in all of this was the fact that Macey has always been a "Teacher's Pet" of sorts. From her first experiences in Sunday School and Preschool to her days in Elementary and now Middle School, Macey's teachers and administrators have always LOVED her. I receive so many compliments  from other adults who work with and know Macey. When I've told them the challenges we face with her at home, they look at me like I'm talking about some other kid.

Now, remember, I have three children, so I know that kids usually behave and perform better for others than they do at home where they're safe to be themselves and make mistakes and even act out. But the difference in Macey is vastly different. Night and day different.

Things that don't bother most of us, greatly bother her--physically, emotionally, mentally, and even spiritually. She deals with daily and even moment-by-moment irritations that would go unnoticed by most people.

By the time she got into middle school, I really began to see how things just didn't "click" for Macey in certain areas. I began to see that her struggles weren't simply due to a hearing impairment (and missing cues from people because she didn't hear them). She was getting to an age where it was becoming more and more obvious that there was something else going on.

I've prayed for her for many years now that God would "redeem her filter," because it seemed like she had a filter over her mind that was scrambling messages going in and messages trying to come out.

On the last day of her 6th grade year, I was working in my office here at the house, and I got a phone call I never expected to ever receive...


To be continued...