Lessons of an Accidental Advocate

strategies for thriving while managing your child's illness

When we brought home 14 and 11 year-old brothers in 2004 and asked them to join our family, I really had no clue what to expect. I didn't expect our journey to be easy. I expected the boys to get into trouble, be disrespectful, and have problems at school. But, I also expected good things. I looked forward to being "the house" in the neighborhood where the kids hang out. You know the one--maybe it's your house--where the cool headed, friendly yet firm parents live with a house stocked with good snacks and just the right balance of sports equipment and video games. I couldn't wait for the sports. Younger Kid is a gifted athlete and I so looked forward to football games, basketball and baseball and being "that Mom" who carpooled the kids to practice and out of town tournaments.

If you have been reading for awhile, you know I was pretty far off base in my expectations. I didn't know anything about mental illness. I didn't even know my boys lived with it. It was "emotional disturbance" and therapy would fix it. As much as our boys have struggled and been challenged, my husband and I have as well. While managing our sons' respective illnesses and behaviors, while learning what the diagnosis mean and trying to keep it all together, we have also been served up a few heaping doses of loss.

We are not "that house" where the kids hang out. Our Younger Kid cannot even bring a friend home with him when he visits. The system doesn't allow for that. And that's just the beginning. Parents live with varying degrees of loss and we adapt to the fast paced, demanding nature of or task. Here are some lessons I've learned over the years. Strategies for thriving (or simply surviving) some of your harder days.

1. Get your Drama Mama on!

Find a parent resource group group in your area or start one yourself. It doesn't have to be all parents of children with autism or a group only for adoptive parents. Join or create a group that is inclusive of all parents of children living with illness. You will reach more people this way and you will have more friends. I have shared the story of meeting my people. I wouldn't be writing this today without their support. No one "gets it" like another parent who has been there. My friends and I call ourselves Drama Mamas. We have our own tee shirts and our own bling. You better believe it! Someday, I will share more about my amazing friends....my Drama Mamas. In the meantime, go find yours! This has to be your number one priority because your kid will be ok if you are ok.

2. Kids do the best they can. All the time.

Yes, sometimes our kids manipulate us. All kids do. But, I choose to believe that mine are doing their best all the time. It's not the same from day to day. Dr. Ross Greene teaches us that our kids live with deficits. "Learning disabilities" in the areas of cognitive function and emotional regulation. And it's not as if the kid has a meter on his forehead letting the whole world know he is about to blow. As parents and caregivers, we must learn to read the signs. Sometimes we miss it.

I remember being on vacation with our boys in Florida. We had spent the day on the beach, surfed and played in the water, eaten all our meals out that day, walked around the pier and through the tourist shops and we ended that day in a crowded ice cream parlor on the beach. It was there, among about 100 other people that one of my kids called me the word that rhymes with punt. Oh yes he did! Loudly. Yep...and one father said, "If that were my kid......"

"What would you do?" I asked him. I explained that my kid had Mood Disorder, about half a dozen other diagnosis, and a traumatic past. "I am the one who pushed too hard today. He wanted to get my attention. He got it. I am sorry you and your family were affected. We're leaving now."

You better believe that my son and I had a serious discussion later about that particular word and he hasn't used it again. But, on that day when he was sunburned, thousands of miles from home, and really done--he did the best he could given his history.

3. It's not your fault. It's your challenge.

That's a line from one of my Drama Mama friends. It's a good one. The ice cream parlor story is a good example of the type of challenge parents have. If your kid is like mine and has skill deficits in emotional regulation, then as his parent, you have to step in as his external brain. And you have to know when to do it. That's the challenge. Sometimes we miss.

It is easy for other parents and even some professionals to witness some behaviors and make judgements about our parenting. "Maybe you should respond differently or make less demands." Maybe I should. I am just a parent doing the best I can. Nobody chooses this. In a recent survey of professionals many made the comment that parents need to be "more consistent and firm" and then their children would behave better. If I had a dollar for every time I heard something similar, we could be having this discussion on a beach at a tiki bar where I could be paying for all the drinks. Parents need support. Try hard to be gracious toward parents like me. Remember the words of Dr. Daniel Hughes, a highly regarded attachment therapist, who says, "The adults must constantly strive to have empathy for the child and to remember that given his history, he is doing the best he can."

Enough said.

4. Treatment is complex and untested.

There is no easy answer. For years, I lived under the assumption that we were one step away from being like everyone else. One med change, one court appearance, one hospitalization, one stay in residential treatment. Whatever "next step" was on the table, I firmly believed it was the answer. I will always remember the day in July 2008 when the social worker gave me a stack of paperwork to have one of my kids "declared disabled". I was stunned. Disabled? Really? It took me 7 months to complete that paperwork. I just couldn't bring myself to do it because doing it acknowledged what everyone else knew but me. There is no easy answer. There is not even a difficult answer. Treatment is complex, largely untested, and it is likely that my kid will struggle with illness throughout his life.

After writing that, I think #5 should be drink. Drink heavily. For that, I refer you back to #1. Get your Drama Mamas together! Parents need a lot of support!

5. Live in the moment.

After #1, I have to say this is the most important lesson I have learned. And it was hard. It took years and I almost lost one of my kids to suicide before I realized this one. Today is what matters. Right now. Put most of your energy into this moment. Be thankful for it. Even if your child is hospitalized or incarcerated, be thankful that he is safe and in the hands of professionals.

I used to spend a lot of mental energy worrying about my boys' future. For each of them, I would have a never ending circle of questions. Where will he live? What if he can't get a job? What if he gets a job and loses it? What if he ends up in prison? What if has children? What kind of father will he be? How is he going to manage college or any kind of post secondary training? How will he support himself? Take care of himself? Take care of anyone else?

I gave all that up and I am happier for it. I care that my boys are happy today. I care about today and focus most of my energy on that effort. Because if today is good there is a greater chance tomorrow will be ok. And if tomorrow is not ok, then I will have the memory of today. I am thankful for this. Not worrying is a real blessing. One day at a time. One moment at a time if that is what is required. Because at the end of my life, I am going to be so thankful for each of my boys and their presence in my life. They are a blessing to me and I choose to believe that doing my best has been a blessing to them. That is what matters. That's what we are all striving for.

If this article is helpful to you, I hope you will share it. Use the widget at the top right corner of the blog. You might be a parent who can benefit from support or you may know someone. You have my thanks in advance.