New Mercies Every Morning....and Love

Okay, I've just read my last post about the Christmas season "Rollin' with the Holidays" stating my desire to minimalize stress by allowing problems to roll off of my back and by being more forgiving, both to myself and in my expectations of holiday events.

I want you to know that the things I write about are often the things I myself struggle with. Often I write and sort things out in my head as I struggle with self-improvement. Blogging puts a light on things that I need to work on in my life.

So, it's no surprise, then, that I must tell you that I royally blew it with regard of letting things roll off of my back this December. In fact, I blew it not once but several times. So, I'm writing about it while I once again try to sort out in my mind where I went wrong.

It's funny how after we make a decision to do something better, that we fall off of the wagon with a big thud. What is God trying to show us? What was He trying to show me?

The day after the post "Rollin' with the Holidays", the family went to a local wing restaurant for my father-in-laws birthday. For starters, I mistakenly received the wrong directions which landed me on the interstate going the wrong way right in rush hour. I was on my own with the two kids trying to find a restaurant across town in an unfamiliar area.

I called "Mattstar", a.k.a. my husband's cellphone, who directed me to the restaurant. I arrived quite a bit late. Once there, I found that the parking was insane. When we finally hiked to the table, our group was smashed into a both at a table needing about 4 more feet to accommodate our group. I could have dealt with this, but Alec was having a lot of difficulty. The noise was irritating him, and the confusion and overcrowding at the table was adding to his distress.

I ended up having to take him outside to calm him down. He looked so miserable inside. We tried it one more time, but he was not doing well so I took the kids home. I wish I could say I let it roll off of my back with a loud "oh well". But it bothered me. One of the things I have difficulty with in dealing with ASD is that the days vary. There are days when that noisy restaurant would not have bothered Alec at all.

Later in December I went to the Christmas program at Alec's school, to find that Alec would not sing or participate. I knew he could do it, but he just didn't want to. An early morning tantrum and the rest of the day goes downhill from there. I had even prayed with Alec's teacher that he would be able to do well and participate. As I watched the other kids with Alec in my lap, I felt a need to surrender.... Surrender to God to just take the expectations, the stress ... away.

I watched another mom cry as she watched her ASD son perform in the pageant. She sat with tears rolling down her eyes as her child made this incredible breakthrough, singing, raising his arms to the music with the others. Later, I allowed myself to find joy in her son's victory. Why not? Aren't we all facing similar battles? In her victory, finally, I found my peace. She doesn't even know it.

Later that afternoon, the kids in our neighborhood gathered at one house to practice for a night of caroling. Alec sat in a living room full of noisy, loud, excited children. He held onto his song sheet, he sang with the others. Every song. He fully participated.

Walking home, I realized that God gives us victories at different times. They don't come at once. What a difficult road it is as we learn patience. It's hard. Our biggest victories come after long, slow battles. Maybe it is the hard the makes them great.

The rest of December included some mall trips, family visits, other nights out, including a wonderful (noisy) Christmas Eve dinner at Outback restaurant...and this time Alec was fine. In fact, both of my kids were great.

So, here is it 2006. I start out the year realized how imperfect I am!

No shock to anyone, but now that I've admitted it to myself, I'm going to move on!

Charlotte Observer's Tim Funk Reports on Delay of Burr's Biodefense Bill

The Charlotte Observer

Tim Funk of the Charlotte Observer reports in December 12th's Charlotte Observer on the delay of Senator Richard Burr's supposedly "fast-tracked" Biodefense Bill. (See link above.)

Apparently special interest groups and bloggers are being heard, as Mr. Funk's article notes.

Burr's bill which would give drug companies protection from liability lawsuits, has angered many, including the Federation of American Scientists, the Reporters Committee for Freedom of the Press and the National Vaccine Information Center.

Burr has said that protection would help to encourage companies to develop new medicines.

However, here is the scary part: Burr, through the passing of this bill, would create the new Biomedical Advanced Research and Development Agency, or BARDA. If passed by the Senate committee, the bill would exempt BARDA from the Freedom of Information Act, requiring federal agencies to disclose records requested in writing!

The Freedom of Information Act was recently utilized to uncover the questionable Simpsonwood meeting notes, which contain comments by government officials regarding the initial studies on thimerosal showing a potential for a link between thimerosal and develomental disabilities such as autism.

As Funk reports, no other federal agency has ever received such a blanket exclusion in the 40-year history of the law.

I'm surprised that all parents are not sounding an alarm over this bill. My greatest concern is that it will render the vaccine makers accountable to no one, and we will not even have the power to look into potential abuses!

Who is looking after our kids? Is the government? I'm waiting to see....

(If you want to sound off, see this link and scroll down for the contact info of your senators: http://www.walkingwithalec.com/2005/10/bill-will-protect-vaccine-makers-from.html)

Hark! The Herald Angels Sing!

Elise and Alec practice carols in front of the Christmas Tree. Elise wants a horse (riiiigggghhht....) and Alec just wants candy.

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Walking with Autism Podcast Number 2

I have added a new podcast of this blog, available through iTunes (search the music store for "autism" and you'll find me) by the name of "Walking with Autism". You can download these podcasts to your mp3 player for listening.

Here's the audio version of the "Rollin' with the Holidays" post below, including music and all, and a special guest "appearance" from Alec at the end of the talk prior to the last song. Enjoy this second podcast!

Rollin' with the Holidays

It's the holiday season, which, in our home, means a celebration of the birth of Christ, Christmas trees covered in fragile ornaments, quiet sacred services, special music, way too much food, visits from family and crazy trips to the mall.

Although the meaning of it all is meant to be peace, love and enjoyment, the holiday season is often stressful for any family. Let alone a family with a child on the autism spectrum. Let's talk about it!

Stressful Situation Number 1: The Parties:

Just for starters, there are many holiday and classroom parties with tempting food. That five pounds or so I gain every season is proof of that constant temptation. For a chocoholic like me, watch out! But when you have a child on a special diet, such as a gluten-free, casein-free diet, parents have to foresee the unexpected and be prepared with substitute foods to keep our kids on their diets. It's a good time to stock up on extra special treats that our kids can have to be ready for that unexpected snowman cookie.

I have sometimes struggled so much with just the diet issues that I have dreaded the classroom parties! Something must be wrong in my thinking. Better preparation would help to aleve my anxiety over diet mishaps ... and the fall-out behavior we find when Alec falls off of the wagon.

Stressful Situation Number 2: The Holiday Shopping

Alec is four and Elise is 6. With children those ages, there tends to be stress at the mall. Without kids, there tends to be stress at the mall! I find myself chasing Alec (and Elise!) from under the clothing racks, always fearful that an expensive item will be smeared with residue cookie or broken. It's happened before, I'm sure it will happen again.

Actually, my kids are pretty good in the shopping arena, provided I follow a few rules: First, the trips need to be relatively short. This requires more planning ... again. (By the way, if anyone could invent a program to help plan all of this, I'd appreciate it.) I tend to get distracted from the goal of the shopping trip. I'll see something and that reminds me that someone needs something else, and before I know it, the kids are tired and I'm frazzled and we have not accomplished what we set out to do. It's the ADD in me, I guess! So, it's time to plan, prepare a list, and then go for it, but wear blinders! If I see something I want to do some more research on, I can add it to another day's list.

Another GREAT option for shopping is doing it all online. On a rainy day like this, who wants to go out anyway?

Stressful Situation Number Three: Family Visits

If anyone can figure out how to destress family visits, then please let me know. Advice columnists have been trying to figure it out for years. Any kid is full of excitement, rowdy, and out of the norm for their day. Sometimes this spells disaster for a child with sensory issues. I welcome comments from others!

For me, I think I am just going to learn not to be so hard on myself, or my kids. They are excited, and it is difficult to change up schedules and meet people they don't see very often. So, I am going to allow them to be kids (although within respectful limits) and not steal all of their joy. I am learning to make no excuses for the sometimes, well, odd, things that Alec might say or do. Like, when he is running and suddenly stops, kneels down and kisses the ground. (What's that all about, I wonder....) That's Alec, and with each day I am appreciating more and more all of the special eccentricities that make Alec who he is. If someone can't deal with it, well, then there's not much we can do about it and I'm not going to stress about it anymore. This is a task in process.

Stressful Situation Number Four: Sacred Services

As anyone can tell from previous posts, I believe that God embraces our kids on every level and right where they are on any given day. That means, they have a place in the celebration of our sacred holiday, which for us, is Christmas. We found a church where we are welcomed to come, and honestly, if Alec were not welcomed there, we would move on. But he is.

For our family, the Christmas season is the most special time of the year. I cannot imagine the holiday without the service on Christmas Eve. Yes, sometimes it has been difficult to enjoy it in the past, as I would worry so much about how Alec would handle it.

The amazing thing is that Alec has always done really well in those services. There is something about the look of wonder on a child's face as he or she takes in the glowing candlelight, the quietness, the music, the Holiness.

Nothing touches my heart more than hearing my children sing out carols from the back seat of the car. Even with all of the missed notes and imperfections, their sweet voices bring tears to my eyes.

It's the imperfections, really, that give life beauty. Who wants Stepford children? It's the chocolate-smeared kiss that my daughter gives me when I am losing my cool at the mall that jumps out and grounds me again. It's the miracle of hearing my little boy say, in actual words, "Mama, this is the best Christmas I ever had" as we decorate the house that help me understand that life is a miracle in itself, and that the journey, with all of the struggles, are what make it special.

Summary Statement for a Stress-Free Holiday Season: Roll with it!

This season, I'm going to lighten up on my kids, my husband, and myself. I'm going to accept a little bad behavior at a mall in order to keep my sanity. I'm going to not beat myself up if Alec sneaks a cookie at a holiday party. I'm going to find the humor in the little things my kids do and change my focus a bit, so that I can appreciate them instead walking on eggshells all of the time around others. In short, I'm going to lighten up and not miss out on the holiday fun.

These days are special, and they pass oh so quickly. The greatest gift I can give myself this year is not missing out on them.

This is the initial podcast of Walking With Autism. Future podcasts, available through iTunes, will focus on overcoming autism and maintaining joy, hope and love.