July 1999

WOW! Two years can go so quickly! And my son's story, which is really my story I guess, has already touched hearts on the internet in the short time it has been here. Some send instant messages, others email. Almost all ask for an update...so here is my first update. Something tells me it won't be my last....

Next month two incredible things happen for my son: he starts first grade and he turns 7, and in that order. So much change in the years since I wrote "When Tears Fall". My son speaks now, although it is not always clear and concise speech. In fact it is rarely so, but we work with him, often reiterating what he says so he can hear how it should sound and so we can be sure we understand. This doesn't always work. He has since been diagnosed with autism and echolalia. Children with echolalia repeat, or echo, what has been said to them. We work on this by asking questions and helping him with the answers. Now when I ask him "what is that?" while pointing at the bus, he can answere all on his own, "Bus." He has gotten more social and actually wants to be hugged and kissed at times. The wall is dissolving between us.

He has advanced a lot over these two years. The developmental delay appears to be narrowing, although I doubt it will fully be gone. He likes to ride trykes and he loves to run. His energy level is still scary, but he has become more outgoing and involved with the world he used to avoid. He likes to see who has knocked on our door and say hello. Where he was once silent, he will now happily chatter your ear off, even if you don't understand it. He loves Burger King. There is still so much locked inside to learn about him. Like any other child his likes and dislikes change, only with him it is a constant challenge to figure out what the new favorite of the day is.

For all the advances, there are still difficulties for us both. For one, any change in the household sets off the tantrums that last for hours. When he feels overdone, or he is left to his own devices for any length of time, he spins a toy for endless hours. He still doesn't understand interactive play, and he and his younger sister just get into it all the time (she doesn't understand much either..and she is too young to use the "he thinks differently" explanaition that has helped my older girls). Another major problem is his father. In the house we try to keep certain things consistent (such as no running out the door when we are going out), and the school does the same. But nothing seems to get his father onto the program. His concern ends at the IEP it would seem. Respite care hasn't been consistent, so he has had at least 3 male friends and nearly as many female caregivers who didn't work out too well. As for me, I have no vehicle so can't make support group meetings. My new husband works all day and my son still wears me out. My son gets the resources HE needs, but I often feel left out in the cold.

Despite that, things ARE better. First grade will be an interesting experience since we will have to work on the homework thing, and my son has ever been difficult to get sitting down and focused on all that paperwork. But he talks and interacts....and my tears still fall when I see how far he has come.

Starting May 2000, I have begun a weblog for my son. It will contain updates on his progress and our experiences as parents (and the family) of a special child. In addition, it will have information about laws, websites and other resources that inform as well as provide help for others in our situation.