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.