Thoughts on Mother's Day: Change the World

Most mother's think about all they can do for their child, knowing that one day they will break our hearts when they leave the nest. Special needs kids defy this - they very well could need us the rest of their lives. One of the things that I love about Zachy is how I still feel like he is an infant in so many ways - like I can keep him little just a bit longer. It plays into that very deep rooted instinct.

All the therapy Zach is going through is counter in some ways to a mother's instincts. Does anyone ever recall letting their child CIO (cry it out) to get them to sleep when they wake in the middle of the night? I refused to do it until Sophie left us so exhausted at age 2, I thought I would give it a try. The first night she went on and on for 25 agonizing minutes. The second night, 15 -20 minutes. The third night she whimpered for around 10. She's been sleeping soundly ever since for the most part. She occasionally goes through spurts where she climbs in to bed with us, or wants me to sleep with her, and I indulge both of us.

I have to be more careful of my indulgences with Zach. My trying to shield his innocence and disability could inhibit him from a happy life that I want him to have. I am only one person, frail and finite. I think about those days when I will be gone; who will take care of him like I do?

Sometimes during his therapy, I have to hear Zach cry while in the arms of a stranger. I will have to watch him this week as they take vials and vials of blood from him to see if he has allergies, or is it Lyme disease, or is it my very own bad genes? I know the blood draw will hurt him, and there is no way I can explain why we are doing this to him. This is breaking my heart in more ways than I can ever explain. The tears are flowing from me nonstop as I write this, if only my tears could replace his, if I could feel his pain for him, I would do it in a second.

The blood tests, much like the therapy, have some controversy. Some say why bother doing it since even if there is something detected, there are no medical courses of action to treat autism. In other words, some might say I am putting him through something for nothing. But there are treatments, and some people are relaying stories of how they help their children, some even saying the R word. (Recovery that is.)

I think of Zach's future all the time. These tests will provide us with a baseline. As much as I am tough on doctors, I do believe they will do much good in the future with autism and that there are a few good ones out there now. I pray that there will be viable options available to all children soon. Some of the techniques we are doing today will become mainstream for all pediatric practitioners in the future. And there will be innovations. Perhaps based on the findings of these tests we will have put Zach first in line to receive these innovative treatment options of the future. All these reasons to run these tests have little bearing on my heart, knowing, although only briefly, I will intentionally be letting another hurt him.

We feel guilt for the little things we do and don't for our children, thinking that these things may make some huge difference in our child's life. This is amplified many times over with a child with special needs. Why did I not save his cord blood? What about that coke I drank in month 4 of pregnancy? Is it because I let him get immunized? How about the fact that I didn't bring him to the doctor with that one fever that Sophie also had - could that have made the difference? Should I run one more discrete trial? Am I paying enough attention to Sophia? I didn't read the last therapists report...Maybe I should do flash cards? I haven't researched treatment options this week.... I trusted the manager at McDonald's that the french fries were wheat and gluten free. These questions really all boil down to just a few: Why did this happen to him? Is it something I did? Is there something I should be doing? Am I hurting him with what I am doing? Am I a good enough mother?

I look back at the last 10 months, then 8 months, then 5 ,then 2 months and I see the progress he did not make, and now (almost miraculously) has made. This makes those occasional and not so occasional burst of tears while in therapy seem easier to bear. Today, my mother and sister were both amazed at the progress. Is it the cocktail of supplements,the diet, the therapy, his own paced development? It's a little of his own pace, but I feel that what we are doing in its entirety is making a difference. The supplements and diet I believe are treating some of the underlying cause, or at least some side effects of the underlying cause. The ABA therapy acts as a rehabilitative agent, reestablishing old neurons to get them working again, training new ones to take over some of the responsibility of the damaged ones. I am very confident that what we are doing is making a difference. Others are taking note too.

In the end, instead of me teaching my child, my child is teaching me. I have learned to stand up for what is right, to look out for others who are not as blessed as myself or my children, that there are people out there to reach out to - angels among us in the form of therapists, that children are amazingly adaptive special needs or not, being around those with special needs makes you smarter and more aware of the work that needs to be done in this world. I once considered Jowonio as a preschool for Sophia, way prior to Zach's diagnosis. Jownio is an integrative setting, where some of the children are special needs and some are not. After thinking about what was best for Sophie, I decided against Jownio. I was afraid "those children" would bring my very bright and articulate child "down". What an idiot I was. As I stated in a forum once regarding the effects of inclusion classes on typical or gifted children:

I likely would have benefited from having more interaction with those who needed special ed for no other reason than to appreciate what I was given in this life.

I have always been a problem solver - likely why engineering was an OK fit. If I had seen the problems of life that some encountered earlier on in life, rather than my very white/middle class/honors classes suburban childhood - perhaps I could have started the problem solving of things that mattered to me more a little earlier.

I am filled with faults, as a person, and as a mother. But that doesn't mean I am not good enough. I am trying, running the marathon with every step being as difficult as the others, yet every step bringing me closer to knowing what I should be doing for him.

In the end, I might not be able to recover Zach, and I cannot change anything that I may have done to have caused his autism, but what good would it be to dwell on this (for me and especially for him?) I can change myself, and I have. And I will change the world I brought him to. Not the way I intended when I was a young, naive, and foolish adult and thought I was hot stuff and had something to prove, but with a heart knowing that someone (many people in fact) needs to do this for all the kids out there. People need to know what autism is, people need to care, people need to get involved even if they don't know anyone with it. The doctors need to quit being mediocre know-it-alls/nots and start being more insightful, the politicians need to make effective legislation changes to ensure the future of those afflicted and their families, the social workers need to quit worrying about peoples feelings and worry more about being effective, therapists need to call it as they see it, teachers need to get rid of their expectations and take on these children as individuals, scientists/researchers need to find a way to establish appropriate mechanisms to survey treatment efficacy since autism is a snowflake disease, and parents need to recognize what early intervention can do and get involved and never stop being involved; life is but a race, and special needs is heartbreak hill.

In the end, I don't know what contributions I will have, they may not be big, but I will try. My children deserve that. All children deserve a world where the adults in it don't give up on doing the right thing. I thank Zach and Sophia for teaching me that I am a flawed yet viable person in this world who has purpose.

I might no be perfect, but I am a good mother. And so are most of the women out there with children, especially the ones who read my whiny blog.

On Mother's Day - take a minute to listen to either or both of the following:

If I Could

Change the World