To Others on This Road ...

I was surprised and humbled to learn that this site was listed on the page of autism resources on www.msnbc.com. I have been receiving many heart-wrenching letters from parents around the country who, like Matt and me, are trying to wade through the confusion to find the road towards recovery for their own ASD kids. I can relate in so many ways to these letters and thank you for each of them.

If there is one thing that I can say to parents who are either beginning their own journeys, or are somewhere along the way, I want to say to never forget that your ASD child (or children) has an incredible, special purpose in this life that is no less important than that of a "neurotypical" child.

Life is so hard and confusing sometimes, and it's hard to understand why things happen. But one thing I do know, is that God has placed Alec here for a reason, and that He has a very special plan and intent for his life.

It's impossible to see things from God's perspective. It's easy to get angry and I certainly have been! I have sat on the floor in tears and asked "why?" on numerous occasions. But I am learning that this is about more than me. I know that these kids have a great purpose and gift to give this world, whether they have made it far along the road to recovery, or just as they are today, right now. That they are touching people around them in many ways.

When I am able to step back from the daily frustrations (sometimes it's hard!) and from my futile attempts to tack my own dreams onto Alec of how I want him to be, I can see the beauty in him just as he is. I can feel the hope that it's going to be okay. I can know that this boy is fearfully and wonderfully made, and that his life is a precious gift.

I am learning to celebrate his daily victories (and each and every day there are victories!) with tremendous joy. Each step along the road is an adventure, a challenge, and what a blessing it is to get to see that boy's face light up after he succeeds! The joy I feel is so much more than I could have ever asked for. It's enough fuel to help me carry on. The vision of those times and Alec's smiles are enough to carry me through the bad days. And we are making such progress!

It's a lesson on love, it's a lesson on patience, and such an opportunity to pour your broken heart out to God and watch Him pick up the pieces and put them together in amazing ways. If life were not hard, would the journey be so special? How blessed I am to be given the opportunity to love this little guy. To have a chance to help someone else be all that God intended them to me, to be used in that way. Somehow, that little guy has changed my own life in incredible ways and is making my life richer, and showing me what this life is really about.

Thanks, Alec, and thanks to God. When I am done and this wild journey is over, to You be the glory.

MSNBC Newsweek - Willing the World to Listen

MSNBC - Willing the World to Listen

Media Coverage at Last

I have watched the first NBC segments on "Autism: The Hidden Epidemic?" on the Today Show and on MSNBC, and I am very encouraged that autism issues are finally getting some publicity.

The three segments I saw were informative and the statement that I heard loud and clear in all of them was that "1 in 166 children are affected by ASD disorders." At the end of the MSNBC report, one anchor turned to the other and commented how surprised she was that the numbers were that high. The other anchor agreed and stated that he was also very surprised to learn that many people were affected.

It's wonderful that an entire week is being devoted to autism, and that the current issue of Newsweek has autism as it cover story. I hope that this will inspire more people to fund research efforts towards learning more about the causes and effective treatments for autism.

If you missed the coverage, you can go to www.msnbc.com or to www.autismspeaks.org for information.

Thanks for so many of you who are writing me. Together, we do have a voice!

Fatty Acid Supplements Benefit Autism, Asperger's Sufferers

Newsletter Item : Fatty Acid Supplements Benefit Autism, Asperger's Sufferers

Autism Series on Today Show, Nightly News, CNBC & MSNBC

MSNBC - Autism: The hidden epidemic? Front Page

Frustrating week and then...A HA!

Alec had just finished a really long stretch of bad days. That means that he has been very foggy, with constant rambling from tv shows and his favorite robot toy dialogue, without any sense whatever. Very little eye contact. We had lost him again.

Matt and I constantly ran through what he has been eating and couldn't find the food we suspect to be causing the problem ... corn. Typically, he may have a bad day and then several good days, but this stretch had gone on for over seven days and we were tired and frustrated.

At one point, I held Alec tightly while he rambled his nonsense and looked him in the eye and said "I'm coming for you, Alec. I'm going to find out what this is and I'm going to bring you back out of it." It was a terribly frustrating week. Matt and I were both depressed.

Then, around 4:30 p.m. last night, I went to give Alec some pretzels. The same pretzels he has been eating about two bowls of every day. I looked on the label and there it was... corn starch!

Alec has been eating some corn-free pretzels. Matt had picked up some Snyder's buttery pretzels at the last visit to the grocery store and didn't realize that they included corn starch. Our little boy had been eating plenty of them each day. A ha!

I gave him a bit of an enzyme capsule (mixed in his 100% juice). In just a few hours, Matt and I were leaving Alec and Elise with our babysitters to go to our Bible study group and when Alec looked at me leaving (he's very attached to me... I was afraid he would throw a tantrum), he smiled and said "Bye! See you later!" and he ran off to play with the sitters.

We have our boy back! At least for now...

In two weeks, Matt is going to a Great Plains Laboratory lecture here in Charlotte. The following day, Alec will be tested at their clinic for food intolerances and mercury poisoning. Matt and I hope we will find some proof of our suspicions the allergies are contributing to his autistic symptoms.

In other notes, the Charlotte Observer did not respond in any way to my email to them requesting that they investigate and publicize the proposal to change the early intervention program for 4 year old kids like Alec. (See the letter in the previous post.) Sadly, neither did any of the newstations. I guess the issue of providing quality early intervention services for ASD kids is not much of a story for them. Again, frustrating.

Fightin' the System

Rumours... Rumours....

Matt and I have heard that the Charlotte-Mecklenburg School System has a proposal on the Superintendent Pughley's desk to eliminate the early intervention low student-to-teacher ratio classrooms for 4 year olds. Alec will be four next year.

Instead, the school is considering sending these kids to classrooms designed for socioeconomically disadvantaged kids. Currently, there are 19 students in these classrooms. Alec is in a classroom now with 7.

Needless to say, we aren't happy. We have written a letter to the Charlotte Observer asking them to investigate this, because the school system is keeping all of this under wraps. There has been no announcement that such a proposal even exists.

Here is a copy of the letter we sent to the Observer:

Last spring, our son was diagnosed with an autism spectrum disorder (ASD). PDD-NOS, in particular (Pervasive Developmental Disorder, Not Otherwise Specified). Although his IQ testing revealed a superior score of 127, his language and verbal skills fall substantially behind his peers. In addition to this, he has a few traits that are characteristic of autistic children, such as difficulty engaging in activities with groups of children, echolalia (repeating what others say, over and over). Essentially, he is a very highly-functioning ASD child, with, we feel, a very optimistic future for recovery and a normal life.

He is currently attending a "self-contained" CMS classroom 3 days per week that is geared towards autistic children. This class has 7 children in it, ranging from ages 3-5. In addition, he receives a small amount of speech therapy from CMS. In addition to this, we are currently paying out of pocket for 2 therapists to come work with Alec on the other 2 days of the week. They are using ABA (Applied Behavior Analysis) - a therapy that has shown promise with ASD children. Last fall, we stopped his private speech therapy, due to cost.

Earlier this year, we heard some rumblings among some educators we know (inside and outside of CMS), that some negative changes were coming from CMS. I called Valerie Todd, director of CMS's Exceptional Children's Program for preschoolers, to find out what changes they had in store for our children.

She said that a proposal, currently under review by Dr. Pughsley, and expected to be approved by March, plans to restructure the special needs program and combine it with Bright Beginnings. Essentially, 3-year olds will remain in self-contained classes, while 4-year olds will get placed into the Bright Beginnings classes. These Bright Beginnings classes currently contain 19 children, and Ms. Todd mentioned that there was a proposal to reduce the class sizes down to 15-19 students. She said that out of the 15-19 children, there would be 3-4 kids with disabilities. She also said that there would be 2 teachers and one assistant per class.

The problem with this proposal is, these kids desperately need one-on-one instruction in order to help them maintain focus and absorb as much of the instruction as they can. According to the Autism Research Institiute, these first years are especially critical, as the child's brain is still developing and has the opportunity to "re-wire" around areas that aren't functioning properly. By tossing these kids into a program clearly designed for "disadvantaged" children, not "disabled" children, we fear that CMS's program is going to waste this time.

Moreover, the 1997 Individuals with Disabilities Act (IDEA) (NCGS 115C-106 to 115C-150) defines special education as "specially designed instruction at no cost to the parents to meet the UNIQUE NEEDS of the exceptional child, ..." and requires that the public school systems provide this type of education to students age 3-20. The act clearly defines children with disabilities as including autism, among many other disabilities.

Here's a link to the CMS Bright Beginnings page: http://www.cms.k12.nc.us/programs/brightbeginnings/brightbeginnings.asp

Here are our concerns:

1. We as parents of a child already in CMS's program, have received absolutely no mention, indication, or anything of this proposed drastic change to our child's program.
   
2. Bright Beginnings is a great idea, and it is clearly designed to help bridge the socioeconomic gap and help disadvantaged children catch up to their peers before kindergarten. This is fine, but their needs are completely different from those of children with ASD's and other disabilities.
   
3. We believe that making the proposed changes, CMS will be violating the 1997 IDEA Act, by not providing for the child's UNIQUE needs, by piling them into a program designed to patch socioeconomic deficiencies.
   
4. We're terribly concerned specifically for autistic children and others with ASD's, whose critical years of potential improvement and recovery are at risk of being spent in a diluted environment not tailored for their unique needs. Especially distressing is the proposed ratio of children to instructors, given that ASD children respond best with a low student to teacher ratio.

These children have no voice in this matter. We parents do, but it's frustrating to find out about these dramatic changes so very late in the process. We would like for someone from the Observer to please look into this further and let the public know about these proposed changes.

I know that the majority of children in Mecklenburg County do not have disabilities, but we believe that the proposed changes will waste valuable time parents desperately need to help rescue their children from these types of disabilities. Our son Alec is an intelligent, loving, child with tremendous potential for improvement from his ASD and beyond. We don't know if CMS is trying to drive parents who care completely out of the system or not, but with these changes, some parents will have no choice but to completely privatize their children's treatment and education. Every parent wants to provide the best therapy, treatment, and education for their child that they can afford. For many families, CMS is the only viable option, and we want to make sure that our children are going to receive the "specially-designed instruction" that they are required to provide them, as protected in IDEA.

Please don't hesitate to contact us if we can be of any assistance. Thanks.