Monday, August 24, 2009

Painful Parenting

It's a good thing that parenting is a marathon and not a sprint, because if it were, then Chris and I would have been disqualified tonight. We had a terrible case of poor parenting which would look like a hamstring pull or a stomach cramp gone terribly wrong.
Tonight we started baseball with Jacob. Now, here in Texas where sports are 'King', we thought we would be safe putting him in the Fall league. The one that's supposed to be less competitive and more about drills and skills. Our first night of practice was an evaluation... that lasted almost 2 1/2 hours. Started at 6pm and ended at what for Jacob is his bedtime. Bad news. He is currently off his medications and not doing so great. Bad news. He has never played a game of baseball before. More bad news.
So, at the end of all this, we should have been prepared for the meltdown that occurred over a popsicle that ended up on the bleachers and not in his mouth. Should have been prepared. His now inevitable meltdown into perseveration and irrationality should not have been so shocking to us and yet it was. We did not handle this well, although we did recover somewhat after we got home. We asked for Jacob's forgiveness, each other's forgiveness and eventually God's forgiveness.
Sometimes I wonder why God gave us Jacob- we seem so unprepared and ill-meant to parent him well. And then I remember that what I am doing when I doubt, is questioning the God of the entire universe. He knows what He is doing, even though I doubt him many times, like tonight.
And that is why I know that parenting is a marathon and not a sprint- because parenting is a euphemism for sanctification. Sanctification is not easy or short or free from care, but I know that my God is in control and that "all things work together for good, for those who are called according to His purpose." So... I cry and I pray and I repent and I kiss those sweet cheeks and hope for a better day tomorrow with God's help.

Tuesday, November 11, 2008

He brings restoration

On Sunday, there was some miscommunication and we took our boys to church thinking there would be childcare at the "younger folks" service. Well, needless to say, the hallway was dark and quiet at 7:05pm- things did not look good. We metaphorically pulled our pants up and took them into the service. Being only 5 and 3 years of age and used to going to Sunday School, they did much better than we thought. Quiet during the announcements and even through most of the music. Luke, being 3, got bored rather quickly. But Jacob surprised us. He was attentive. He tried to read the words on the screen. He even sang along with one of the songs. It was a song based on Psalm 30:11, "You have turned for me my mourning into dancing; you have put off my sackcloth, and girded me with gladness."
Our autism journey has been messy. It's been painful. It is confusing and overwhelming at times. But all of that makes the joy so much sweeter. To stand by my son, his arm around me, and hear his sweet voice singing about God turning our sadness into joy- that makes it all worth it. Truly it does!
"You take my mourning and turn it into dancing, you take my weeping and turn it into laughing, you take my mourning and turn it into dancing, you take my sadness and turn it into joy. You bring restoration, You bring restoration, You bring restoration to my soul." It is in these moments, that I am firmly convinced that God's plan for us is good, despite it being sometimes hard and painful. God can use it ALL for good.

Monday, November 3, 2008


A few months ago, I went through a period of mourning... again. I came to the conclusion...again, that my child will never be "typical." Typical is a word that parents of autistic children use to refer to normally development kids who process information in the typical manner. I had one of those 'It's not going to get me anywhere' daydreams where I thought about how Jacob would be if he wasn't in the spectrum. This type of thinking is so futile and silly. My child is what he is, and trying to figure out the 'what could have beens' doesn't help our situation one iota. All of this came crashing back to me tonight when I read this quote by a doctor talking to the parent of a newly diagnosed child.


I seem to go through these mourning periods over and over. I come to grips with life as we know it and the unforseeable future, tell God that I know He has a greater plan than I can see and move on. But every once in a while, it sneaks up on me. 'It' being the normal child. I can get envious of my friends with unaffected children. "Do they appreciate what they have?" I ask myself. "No," is my resentful response. "They think their child is difficult, but they don't know what difficult is." Their child doesn't get stared at for being different. They think their child's tantrums are hard to handle, but they haven't ever walked on egg shells around their own toddler. Anger, sadness and jealousy surge to the surface in me. The part of me that wants it "easy."

Jacob isn't easy, but God, I love him so much. There is a fierceness in me when it comes to my child and helping him. I can't imagine my life without him in it. I can't imagine our family without his presence, so I continue to mourn the boy that I didn't have and celebrate the boy I was given to love. I keep praying that God shows me how to love him the way he needs to be loved and that I can accept him, challenges and all.

Thursday, October 23, 2008

Autism: The Musical

AUTISM: THE MUSICAL counters bleak statistics with 1 womans optimistic pledge to lead a group of autistic children in defying diagnosed expectations by writing, rehearsing and performing their own full-length musical. Following 5 LA children over the course of 6 months, director Tricia Regan captures the struggles and triumphs of their family lives and observes how this musical production gives these performers a comfort zone where they explore their creative sides.

After hearing about this documentary several times, I decided to buy it, and watch as a way of learning more about my son. I expected it to be maudlin and depressing, and at times it was extremely sad. However, watching these children and their parents struggle and succeed was a hopeful experience too.

The thing that most surprised me most was what I learned about my own child from watching these other children on the autistic spectrum. As I observed these kids, I saw my own. Things that I always assumed were "just Jacob" were revealed to me to not be Jacob mannerisms, but autistic mannerisms. It was comforting in a strange way, because it explained quite a lot about him.

In our trips to our specialist, I have been fascinated to see other children who have been diagnosed too. I do my very best not to stare at them, but I see kids who appear like my own, and I am drawn to them and their behaviors. The lunging movements, the strange sounds, the aimlessness of their wandering, their lack of eye contact and often their silliness. There are other children who act this way? Yes, and it is comforting to me that Jacob is not the only one. Isn't that odd? I have learned that my child is different but the same. Watching the musical has helped my look at my child, my marriage and my other son in a new way- one with clearer lenses. I am more patient, and I am more aware.

I am glad that I bought the documentary and I plan to show to my son (for as long as he watches it), my husband and my friends who have been touched by autism.

Thursday, October 9, 2008

Individualized Education Program (IEP)

May this article from a special education teacher inspire you to get more involved in your child's education process. Be their advocate! God put them in your family for a reason!

(From Catherine Whitcher, M.Ed, Precision Education)
First, let me remind the Precision Education Community that I was a special education teacher. I have the utmost respect for teachers. They show up everyday to teach children and deal with the political system. I also admit that I violated my student's rights, I BROKE THE LAW!

I never read a student's IEP from front to back. I rarely charted goal progress. I only glanced at modifications that needed to be done. I was told by my administration to "watch out" for a problem parent whose child was assigned to my classroom. Sure enough, the problem parent called and asked for a meeting before school started. The mom drilled me on teaching strategies, charting and reporting. The curriculum had to be explained to her and the aides had to have training. My world was turned upside down.

I discussed the conversation with the administrator. She told me that I had to comply with the Mom's requests because in the IEP it was written to communicate everything she had been asking. What? Wait a minute, if this IEP was written with accountability- what were the other ones written like?

So I spent the weekend reading all my students IEP's and found out that this child's IEP really wasn't written much different than the others. The difference was that this Mom knew what was in her child's IEP and how her child's education should be executed. Armed with this newfound knowledge, I took it upon myself to initiate the same types of meetings with the parents of all my students.

Parents were amazed at how much information I was giving them and how I wanted them to be involved. Goals were not only being met, but exceeded and IEP's needed to be rewritten by December. My administrator walked into the room a few months later and my entire class was sitting at their desks. A reading exercise was on the overhead and the aides were engaged in assuring the lesson was adapted to each level as I directed from the front of the class. It was an unexplainable experience to have my superior stand speechless at the progress that was made simply by me doing my job according to the Individuals with Disabilities Education Act (IDEA).

I ran into the parent who turned my world upside down last summer. I told her this story and she had no idea that she had such an impact on not only her son's education, but also on me as a professional and the other students who passed through my classroom. I went from an average teacher violating student rights, to a proud teacher of successful students all because of a parent who knew her son's rights and had the strength to become a proactive member of her child's education team.
Copyright 2007 Precision Education (May be reprinted with permission) Catherine Whitcher, M.Ed

Chelation study canceled

Autism does not kill children. Chelation has killed children. We must be careful to not allow our desire for our child to be better to adversely affect the rest of their lives. IV chelation is dangerous. There are much safer, and less aggressive, yet effective ways to remove these metals from our children. Be careful.

The National Institute of Mental Health (NIMH) had planned a study on the effects of chelation therapy on children with autism. Chelation therapy purports to pull toxic metals such as mercury from children. While some parents claim to have found chelation therapy helpful in reducing symptoms of autism, the NIMH found that there was no strong medical science to back up the parent claims. The NIMH was also concerned that the drug used for chelation (DMSA) was too risky for use with children. The NIMH therefore cancelled the chelation study.