Thursday, April 12, 2012

Caden's Mommy

Dear newly diagnosed autism spectrum disorder parent,

I know that you are feeling overwhelmed at the moment but I have a few thoughts that I want to share with you….just some things that I wish someone would have told me in November of 2008 when my son was diagnosed with autism.

Please know that however you are feeling at this moment is perfectly acceptable. Mad—makes sense. Sad—yep been there. Overwhelmed—sure you are. Relief---I understand that one too; you finally have a name for what you have been experiencing.   There are dozens of other emotions but I don’t need to go through them all—the bottom line is that this is a big deal and you are entitled to feel however you are feeling.  Go into the bathroom and scream, go for a 3 hour walk or run, eat ice cream, rant and rave in a journal or to a friend. Do what you need to do but I am going to ask, no beg, that you avoid 2 things. First no matter how you are feeling please don’t ever hurt, much less kill yourself or your child. The horror stories are numerous in the news but the bottom line is that your child is still your baby. The diagnosis is just a name to what you have already been experiencing; don’t make it more than that. Not every day is going to be like day 1. Some days will be better and some days will be worse but every day will be different and why would you want to take future away from you or your child. 

Second no matter how you are feeling, please don’t ever express those feelings in front of your child. Humans have 2 basic types of communication, receptive and expressive. Receptive communication means understanding what is being said while expressive communication refers to the ability to respond. It is easy to tell if a child has expressive communication; we can see or hear it. But receptive communication is much harder to measure. When Caden was first tested the therapist used abstract line drawings which we now know are too figurative for him. He was recently tested with actual color pictures and tested at 100%. The point is receptive language scores are dependent on how the child is tested. You have no idea what your child understands and the last thing you want him or her believing is that you doubt them or question your feelings about parenting them. Expressive language is easier to gauge; we can see or hear it. But receptive communication is much harder to measure. When Caden was very tested the therapist used abstract lining drawing which we now know are too figurative for him. He was recently tested with actual color pictures and tested at 100%. The point is receptive language scores are dependent on how the child is tested. You have no idea what your child understands and the last thing you want him or her believing is that you doubt them or question your feelings about parenting them. See “bottom line” above—your child is still your baby.  The world can and will be a cruel place. Maybe it will a child who says something cruel because he or she doesn’t know better or an adult being cruel. The fact is something will be said or done and your child needs to know that you are 100% in their corner…their advocate…and that you have unconditional love for them.

You probably have a lot of questions now that you have this diagnosis. Start researching and reading. Keep notes of all of the ideas that sound intriguing or that you want to learn more about or maybe even try. But as you walk away from each article or blog or book remember that every child with autism is different and therefore every family with autism is different. What works for one child and family may not work financially or philosophically for another and that’s okay. Early on I came across Applied Behavioral Analysis a lot but I’m a researcher by training and it just didn’t seem like an approach that meshed with our parenting philosophy. I knew it wasn’t right for us but I still felt guilty because there was a lot of it out there and what if my child was missing out on “the answer.” Same thing happened when I read about fish oil and couldn’t quite reconcile that with our life choice to be vegetarian. Of course I sobbed after reading Horse Boy because we didn’t have the time, money, or resources to travel the world in search of an answer for our son. We also had another child with a major medical condition that prevented that kind of travel, not to mention she is deathly allergic to horses but still has that little girl with a pony dream and there’s no way I could put one child on a horse and so cruelly crush the other. It doesn’t matter what it is—ABA, 60 hours a week of therapy, Biomeds, or Camel’s milk—some things work with your life and some things don’t. Try not to lose sleep over what you can’t or won’t do and focus on what you can do with your child. Remember you are the only one who can decide what is best for your child.

It’s important to remember that the world will say stupid things to you (that post is coming up next) but strangers who don’t know better aren’t the only ones. Well-meaning friends and family will say the wrong thing as they try to support you and help you adjust.  Just like you need to feel how you do in this moment, so do they.  That has to be okay and you have to give each other the space for it to be okay.  As you make the above mentioned decisions you may lose a few people in your life along the way.  It’s never easy but autism is hard enough without surrounding yourself with people who don’t get it. Give them time to deal and then make decisions about who is and who isn’t healthy for you and/or your child. In the same breath hug those who do support you tightly and be sure to thank them. Having a few strong supporters is so much more valuable than a lot of luke warm companions.

The people who may surprise you the most though are the autism community members. Let’s face it; we all are living this life and we should get it. Unfortunately because there is no known cause or cure for autism, we are all left with a lot of doubt. Human nature dictates that we defend our choices to the bitter end and look for support where we can. When others express a different path, we often lash out and try to prove our method as a way of justifying our own choices. I’m going to ask that you keep this in mind when you ask questions or seek support—there are a lot of great people in this community who are open to a variety of ideas and who have a lot of experience so I recommend you find people either face-to-face or online. But remember that attacks can and will happen for all of the reasons I’ve just described. I try to avoid them or simply walk away but you’ll need to find the method that works best for you. Please remember though that eventually you will be the seasoned autism veteran and others will be asking you for your opinion, maybe you can try to be open about your experiences. We have to find a way to bridge our community because I’m not entirely sure we can ever achieve acceptance in the larger community if we can’t accomplish it in our own. Again the bottom line is that every child and every family is experiencing a different autism.

If you are reading this then you’ve already seen my blog intro—some days the stories are adorable and some days they are horrific but they are all a part of Caden’s tale. That’s the thought that I want to leave you with—there will be rough days. Days so rough that you wonder how you will make it through and you wonder how or why you are living the autism life. But for every one of those days there will be good, even great days. I try really hard to focus on those—I think about Caden’s first word, one of the few spontaneous hugs that I get, him really getting the “potty training” thing, and most recently him reading the word skunk. I have no idea how or why he can read skunk because he doesn’t know all of the alphabet in writing yet but he did and it is those kinds of moments that make me realize how lucky I am to be Caden’s mommy. I wish he didn’t have all of the struggles that he does but I wouldn’t change him being my son for the world. I could do without autism but if it’s a package deal then we are in this for the long haul. I was Caden’s mommy before autism and while I’ll never stop fighting autism, I’ll also never stop being grateful for my baby. I guess this is really our tale.