November 4, 2013 by Marj Hatzell
Bugaboo has made some amazing progress the past few months. We still have a long, long road ahead but after years of little-to-no progress and struggles with his health, we’re finally going full speed ahead. It’s exhilarating. Kind of like being in a convertible and speeding down the highway. Minus swallowing ALL THE BUGS.
In the past year he’s been attempting to verbalize more, is picking up on using ACC for communication, is more interactive, is learning to enjoy leisure activities, is sleeping better, has better health and is just a happy dude all around. We love this, of course, because that’s the “real” Bugaboo. He’s a happy, happy little guy. Ok, he’s not so little any more at the age of almost-eleven, four-feet-six-inches and seventy-five pounds but he’s OUR little guy. You know, figuratively speaking. Or literally, since he’s small in stature for his age.
I’ve been asked by countless parents over the past few month how we are doing this. What’s our secret? Are we trying a therapy? Are we trying a diet? Does he take a vitamin? Is there a medication? Why is it suddenly clicking? If a train leaves New York going 70 miles an hour and a train leaves Boston going 90 miles an hour, WHAT TIME DOES THE TRAIN REACH CHICAGO????
If only I had the answers. I can only give you an answer based on assumptions. But one thing I know for certain? Things are finally falling into place for him. I think we just have the right combination of health-diet-meds-school-activities. Once we got the seizures thing under control, got to the right doctors, figured out his food allergies and got to the root of his sleep disorder, things started aligning. His ability to communicate is a HUGE factor. His school has made a huge impact on him, too. It’s not any ONE thing. It’s the sum total of all of it that’s making the difference, for those of you not good at math.
I’d like to take credit. But it’s not me. It’s HIM. He’s doing it. I can only make an educated guess as to why he’s finally making so much progress in such a short amount of time.
One thing I can tell you without a doubt that has changed? WE’VE changed. We’re different parents. Sure, we’ve always tried our best, we’ve always advocated for him, and we’ve never stopped looking for answers. But it turns out the answers we’re right under my nose all along.
All we needed to do was to stop trying to “fix” everything and start working with what we had.
All we had to do was presume intelligence.
All we had to do was relax and trust our parenting intstincts, instead of being so worried we’re screwing him up for life.
All we had to do was let go of anger and resentment.
All we had to do was throw away the developmental charts and stop comparing him to kids his own age.
All we had to do was stop babying him and start expecting more of him.
All we had to do was figure out where his strengths were and build upon them.
All we had to do was love him.
Sounds so simple, doesn’t it? In reality, the hardest thing to do was stop being so insecure as parents. Stop listening to the negatives. Stop second-guessing ourselves. The rest was gravy. It was a long, difficult path.
When we found out our children had developmental disabilities we didn’t really mourn. We were more of the, “I TOLD YOU SO” camp. We immediately jumped into, “What can we do to improve their quality of life?” mode. We concentrated on what made them happy and how to make them more independent. That’s a good thing, really. But we were so hung up on other people’s standards of what our child SHOULD be. We listened to the experts. We listened to other parents. We thought we were supposed to slam Bugaboo with therapy and work him hard. We thought we were supposed to use medication and diets. That’s the way to “fix” this all, right? At least, that’s the original opinion we had. (To be fair, he does take medication for significant medical issues and does have a special diet, due to allergies.)
The last eight years since diagnosis have been a roller coaster. Sure, life is a roller coaster anyway. Up, Down. Up. Down. (QUICK! name that movie!) Sometimes there were more downs. And more downs. And more downs still. But then we had some ups. It renews perspective and helps refocus on the end result.
The end result was always to love him.
Which we do anyway.
Once the cloud was lifted, it all became so clear. Our job is to love him. Then we needed to let him be Bugaboo. Sure, we need to guide him on our way. It still isn’t easy. It never will be. We still need to make decisions. He still needs school and some therapy (and boy howdy, speech therapy has taken him far, y’all) but we’re not so FOCUSED on that anymore. We’re focused on how to have the happiest Bugaboo. It turns out that Bugaboo is already happy. We just needed to believe in him.
Your journey won’t be the same. It will take you on a different path, and that’s ok. But take it from someone who knows. Focus on your child, your child’s happiness and loving your child. Stop focusing on fix, cure, change, rearrange, compare. They will grow. They will develop. Their skill sets will improve. What they need most is YOU. Just you. Your unconditional love.
That’s when the magic will happen.