Alec the "Shower Cowboy"

Hope ... Holding on Tightly

There are three things that will endure--faith, hope, and love--and the greatest of these is love. 1 Corinthians 13:13

This past week has been a rough one, and today, I believe, was the worst day I've had in a long while. To start things off, we received the first of Alec's Great Plains Laboratory testings back this week, the Organic Acids Test. The results showed that Alec did have a problem with yeast, even though a test run less than a year ago by his pediatrician came back negative for yeast. With this test, Matt and I were hopeful that we might be on to something. It was wonderful to see a lab report showing something wrong that could be treated.

Earlier in the week, one of our two great therapists, a UNC-Charlotte student, decided to quit due to her school schedule. This left Alec with one therapist, and here we go again with searching for a new one and training, and money.

Blow number two came when we met with the public schools to discuss their new changes to the early intervention classrooms. These are changes we are not happy with. We didn't feel that the meeting did much more than allow us to air our griefs. Basically, we get the "try it and work out the problems next year" argument.

But the biggest blow.. and the one I am finding the hardest to deal with, came today when we took Alec to a neurologist for the first time. I have no idea what we were looking for. We almost cancelled the appt., because I didn't think there was much that could be done.

As it turned out today, Alec was having a really foul day. On a scale of 1 to 10, with 1 being the worst, we were dealing with a 2. In fact, we even had to send our therapist home early because after two hours Alec wouldn't do anything but scream at her. The fact that this was her last session with him didn't make me feel very good that it was also her worst session with him. I put Alec to bed and hoped for a fresh start for the 1:00 appt. I had to wake him up to go.

If you are a parent of an ASD kid, you may also have problems with your child taking a long time to wake up from a nap. Sometimes, it's a good 40 mins before Alec is himself. Matt and I found that his ill mood was still a go at the appt. We can handle ill moods, however.

What was difficult to take was listening to the neurologist tell us that Alec, basically, would never be okay. She mentioned that, even if he did get a job as a web designer or something like that, the fact that he can't communicate well will always be a problem. She said, "I hate to see parents get broken-hearted, hoping their child will be okay." Alec is really doing well, or at least I thought he was! But how awful to hear that.

We also discussed the Great Plains Laboratory results, which she said that for most parents she knew, the results always came out indicating problems such as yeast overload and metal toxicity. When asked about chelation, she said that basically, when there has been mercury damage to a person (or child, in this case) the damage has been done and can never be repaired.

She basically said that tests have proven that parents will see improvement in any treatment just to hold on. She also said that Alec's high IQ of 127 was virtually meaningless without proper ability to communicate.

Talk about stealing one's hope ...

As I write this, Alec yells up the stairs to me 'Mama! Mama! Want chocolate milk? Please?"

The therapies she could offer me were drugs. I know that Alec might benefit from drugs and Matt and I won't say we'll never rule out anything, but we just don't think that, at 3 1/2, this is right for Alec without trying alternatives first.

So, I drove back frantically to meet my five year old's bus in time, in tears. I don't want to give up on the hope that Alec can improve. Every hope that Matt and I had that there were medical possibilities, in diet, in yeast therapy, in chelation, were crushed. And we still paid yet another bill, gaining nothing. I believe the last thing she said to us was, "I hope you found this appointment helpful".

I can't really writing anything inspiring right now. I need to go and look at my own writings, finding strength in the battles we have already won. I need to regroup, recharge, and go back to God. Where are You, Sweet Father? Why so quiet today?

As I gazed outside of my kitchen window today, looking out for the birds who always seem to comfort me in their easy existence, all I could see were black common grackles with their haunting, empty eyes. As I watched, dozens of them settled in the yard and on the trees in my back yard. Please, Lord, bring me a bird of color. Bring me some hope.

Clarifying the New CMS Changes... and Responding to an Insightful Post

To tdb:

I would be exciting if CMS offered a logistically feasible ABA program in this "normal" sized classroom. Although I am finding study after study that say smaller classrooms are more beneficial. Maybe a limit of 12?

What we have been offered is 1 certified teacher, most, to my understanding, without experience in teaching kids on the autism spectrum, with one another assistant. The assistant, to my understanding, would not be trained. These two individuals would oversee classes of 15 - 18.

Bright Beginnings is a literacy-based program (is this good for my language-delayed son?) designed for socio-economically disadvantaged kids. That's a great program, but the curriculum does not match the needs of my child right now. That "typical" classroom will contain kids with behavior issues, English as a second language kids, and up to three kids requiring IEP's. I'm not sure I can qualify that as typical. Even so, I feel that there is far too little staffing in these classrooms to provide effective instruction.

EC children will be assigned to one of 22 classrooms, but I am told they are expanding that to 35. I understand there will be 5 floating, trained teachers who will help deal with issues. I don't feel that 5 floating teachers between 35 schools spread across the city is enough to effective deal with the problems which are bound to occur.

If CMS staffed each of these classrooms with a trained teacher to assist in the methodologies such as ABA - working wonders with my son - then I would feel better about it. Right now, we are told to just "try it" and deal with problems later. How long will resolving those issues take? Months of precious time, I expect.

I will contact the two individuals you mentioned, however. I am always open to possible solutions. I know there is one out there. My husband and I are less concerned, at least right now, with Alec's "fitting in", than in his learning. This is an important year and we feel that his ability to learn and progress is critical. We don't want to waste time while the problems are ironed out. We won't get his fourth year back.

I welcome responses to this post! I know I don't have all of the answers...but I am trying to find the best answer for my son.

Banding Together

Alec's self-contained early intervention pre-school class with Charlotte-Mecklenburg Schools is going to be moved by CMS to a program designed for kids with socio-economically disadvantaged kids next year. While that is a good program in itself, the program was not designed for the needs of kids like Alec. There is a real discrepancy of needs there.

In addition, these classrooms will have 19 kids in them... a big change from the 8 that are currently in Alec's self-contained class. I cannot image having 19 kids, some with sensory disorders and some with behavioral issues, in one class of 4 year olds. It's beyond my comprehension.

Apparently CMS doesn't care, so the parents of kids affected with this move are banding together and researching the legality of this decision by CMS... and what the rights of our kids are.

Has anyone out there been successful in a similar battle? We are looking for advocates and also possible representation from persons with expertise in kids with special needs. I'm open to comments! Send them on!

A Trip to TEACCH, a Biomedical Update.. and Improvement!

Since Alec was diagnosed, I have not taken him to TEACCH. I'll be honest .... it's because I have heard a lot about the "battle" between the TEACCH method and ABA, and I feel that ABA is doing wonders with Alec.

But, TEACCH comes into the classrooms to help (or at least, they DID but Charlotte-Mecklenburg Schools seems to keep reducing the time they get with the kids), and so I wised up and took him yesterday for an initial hour-long appt. The two women that I met were extremely kind and seemed very knowledgeable about autism.

While I talked with one of the women, I watched Alec playing with the other from behind specially mirrored glass. Alec was doing great! He was involved, interactive and full of smiles. He was playing appropriately with the toys. The entire session lasted about an hour. Towards the end, the woman working with Alec was drawing numbers on the dry erase board (18, 20, 29, 15, 12...) and Alec was correctly citing them.

What is beginning to dawn on me is that something, the GF/CF, Soy and Corn-free diet that we've been on for about a week and a half, is starting to work. Or the new supplements from New Beginnings? Alec seems very clear. He is behaving very appropriately. I'm starting to get very excited.

When I walked into his school, the speech teacher Kelly stopped me and said that she was discussing with Alec's teacher, Miss Natalie, that something was different about Alec. I was glad she told me, but I have been having a tough time getting Alec to eat.

He's a terribly picky eater. But...I just received some tips from Lori Knowles of the Great Plains Laboratories including a document "Picky Kids, Eating, And Autism: Creative ways to get your child to eat healthy foods" by Lisa Ackerman.

I'm going to read up. In the meantime, I do believe that Alec is improving! This is mid-way through his second week of supplements and the GF/CF (and for Alec, corn and soy-free) diet.

I'll keep you posted!

Just for the record...

A few of my friends who read this blog have asked me, "Do you really feel so down?" I guess that people who know me personally don't know much about the things I write about in Alec's blog... maybe I hide it well?

But truthfully, I've thought about it, and I think I tend to write at the harder times to help me cope. Writing things down are a way for me to deal with the challenges and to process them ... to think things through.

Actually, I really am a very happy person with a lot of joy - I mean a lot of joy - in my life. And Alec brings me far, far more joy than worry or distress! I am so glad he's here with us and I could not imagine it any other way. He's precious!

Alec at a Valentine's Party at his early intervention pre-school class. This was BEFORE the GF/CF diet began! 

Testing, Testing, Testing ... and THAT DIET THING

Thanks for all of the emails of stories! I am reading each one and am responding (albeit slowly!), but I've been swamped this week with work (I work part-time from home) and in working on moving Alec along in his recovery.

Here's what we've been doing: Matt and I attended a conference put on by the Great Plains Laboratories this past weekend. Information overload, but it gave us both a lot of hope concerning new biomedical therapies for autism. We have been waiting to take thelab tests for Alec and I had sent away for the free test kits (it's the processing of them that depletes your cash reserves...), but we found out about a conference here in Charlotte with a following clinic to do the labs. (Others are conducted nationally. Check their site for other conferences.)

The conference featured a number of speakers, including William Shaw, Director of The Great Plains Laboratory whose session was titled “The Importance of Biological Interventions in Autism” and Rashid Buttar, DO, who presented “Chelating Heavy Metals with DMPS”.

Dr. Buttar was featured in a February 15th, 2005 edition of the Wall Street Journal's Personal Journal in an article entitled "A Radical Approach to Autism". He has a son who is autistic. He developed a transdermal chelating cream that has helped his son. Dr. Buttar has testified before Congress regarding this treatment (read the Journal article) and is now working hard to further biomedical therapies to other autistic kids. His website is not very informative in terms of treating autism (looks like its still in the works), but it does have some info there. Here's a link: http://www.drbuttar.com/video/heavy_metal/heavy_metal.htm.

Alec has an appt. with Dr. Buttar scheduled for June (its a long wait...).

Dr. Buttar believes that autism is a result of mercury poisoning (metal toxicity), with genetic factors causing a child to not be able to flush the metals from the body. He believes that by removing the toxicity, then we can repair the core of autism itself.

Dr. Shaw spoke on yeast overgrowth and allergies. So, Matt and I have finally been convinced to formally give the GF/CF diet a true test for at least four months. With Alec, however, we believe he also has a corn allergy, so we are struggling to find food to feed him. I'm going to be posting, I'm sure, about my upcoming frustrations in that area.

Great Plains Labs offered a local clinic the next day, and Alec has taken their panel recommended for autism and PDD. (See http://www.greatplainslaboratory.com/autism-test.html for more info.)

We are pretty excited to see what those test indicate. In the meantime, the GF/CF diet has left Alec, well, sort of foggier than usual. He is repeating phrases over and over... much more than usual. It's only his third day. Are there any parents out there with suggestions or comments about what to expect in starting this diet? If so, I'd love to hear from you!