“Oh it’s okay, we won’t bother him.”
“So it’s okay to talk about it in front of him?”
This is a snippet of the conversation we recently had with the psychologist who heads Caden’s autism therapy team. The “it” was autism and the “he” was obviously Caden. I think she was a little surprised that we were so open about everything in front of him, but then again it is also possible that nothing surprises her about our household anymore.
Caden knows he has autism and an immune deficiency and allergies and so on. He can’t give you a medical definition, although he can usually give you a body part if you ask—so autism will usually refer to his brain or head, allergies to his mouth and throat, etc. He can even tell you which body part each medicine he takes helps, although he doesn’t know them by name, only by color and if he chews it, drinks it, or inhales it. Oh, and he does call the lactulose “poopsy medicine,” which is technically true, but also illustrates that he understands all of this on his level. And that’s how we intend to keep things. He knows that we go to the hospital every 28 days because his body isn’t very good at fighting germs, but he also knows that his body is really fast when it comes to running and jumping. He knows that Elf is an autism service dog and gets to go to school with him for that reason, while other people’s dogs have to stay home. He knows that some days he has to come home early to do autism therapy, and that autism is the reason he has a lot of challenges with reading, talking, emotions, etc . He also knows, though, that he has a pretty special dog and bracelet (Project Lifesaver) because of his autism, and that his autism makes him really, really good at video games, math, and not giving up on anything. We keep the conversations around him natural, on his level, and answer questions when he has them no matter how big or small. He also knows that he can stop the conversation if he doesn’t want to talk about it at that moment.
I suppose if I am honest I started this approach with Ryley because I was a single parent taking her to doctor appointments; there simply wasn’t anyone to sit with her in the waiting room while I talked to the doctor so she heard what was discussed. Because I didn’t want her scared or confused by what she was hearing, I started asking her if she had questions and usually she did. When she was younger, it was usually along the lines of if it was sticker (something little) or balloon (something big) worthy. As she has gotten older, she asks some pretty hard-hitting questions about risks and recovery and long term outlook. In fact, last summer as the doctor tried to skim past the material being used to replace her ear cartilage during surgery, she stopped him to ask some very specific questions about the donor process.
Since the approach works in our medical world, we just carry it over into everyday life. We don’t have a lot of secrets from the kids, and we work most challenges out with their involvement. There are topics that simply aren’t up for discussion—things like wearing seatbelts, taking medicine, or other life/death issues. But we don’t uphold a double standard either—they wear seatbelts, we wear seatbelts and so on. Things that we can do that they can’t, we explain in plain and simple terms, and they generally get it. When we can, we give them power to make decisions and take control. Caden needs his Project Lifesaver bracelet for safety reasons, but he can be empowered to help us check the battery every morning. He has to take all of his medications, but he can pick which one he takes first, second, and so on. Surgery isn’t discussable, but Ry can help us figure out when in the schedule will safely and most conveniently work with her school or dance schedule.
And this is all age and maturity level appropriate. Ry doesn’t like secrets, and needs to be prepped ahead of time particularly for anything medical; we talk to her as soon as we know something, and we help her find more information if she wants it. Caden, on the other hand, just gets anxious with too much lead time so we prep him the day or night before. All of this is a conversation; we share information, we answer questions, and we legitimize feelings. It’s okay in our house to get mad about an illness or a condition as long as it doesn’t become paralyzing. Recently, Ry became very caught up in her new medical challenges, and was having a hard time finding her perspective again; we found some kids her age with similar conditions for her to talk to and it really helped. Sometimes the conversation needs to happen, but maybe a peer or someone going through it understands better than mom or dad. We know that having a sibling with autism isn’t easy, and that she has feelings she probably isn’t comfortable venting to us, so again we’ve found peers and other adults that she can talk to.
And none of this is a perfect science. Sometimes we share too much information or information at the wrong time; my daughter is famous for saying, “geesh mom I so didn’t need to know that right now.” It’s really hard to gauge what Caden does and doesn’t understand so we do a lot of backtracking and fixing, but at the same time I feel better knowing that words like autism and immune deficiency can be spoken in front of our kids without shame or embarrassment. They are just facts in our family--a part of who we are. And I’m hopeful that if they know we are comfortable sharing with them, as they grow older and face new challenges in their lives they will be just as comfortable sharing with us. Although the questions are occasionally awkward, there’s no one I’d rather they get information from than us. Now if I can just find the answer key to life we’ll be set.
BUTLER MODAFF ROAD TO CHINA ADOPTION UPDATE!
We have been matched with an absolutely adorable little boy. He was born October 4, 2012 in the Henan Province. For adoption privacy reasons, I can't share his picture with you but trust me when I say he is absolutely ADORABLE! He has incredibly gorgeous big brown eyes and the most adorable smile ever; we can't wait to bring home and make him a part of our family. We are currently waiting on the next step of paperwork but are hopeful that we will travel this summer.
If you are interested in taking a look we do have several fundraisers underway. Through April 26th, we have are hosting an online Origami Owl Party: http://tracymiranda.origamiowl.com/parties/JenniferButlerModaff279905/collections.ashx We also have a t-shirt sale that helps us fundraise while also spreading adoption awareness: http://www.adoptionbug.com/butlermodaff/