If only I could have known then what has taken me years to understand! But it's not too late for others who are just starting out along this difficult and wonderful road to benefit from the lessons I learned the hard way. So, in case it might help someone else, here are some things I would say to my younger-mom self:
1. Calm down! It’s a marathon, not a sprint.
If your child has a developmental challenge or disability, by definition it will be with him for the long haul. We're not talking about strep throat or a broken arm -- there is no short-term solution to these issues. Obviously therapy and intervention are very important, and in some cases, early and intensive intervention are critical. But if you start running around like a chicken with your head cut off and don’t stop to breathe and calm down, you risk burning yourself out -- not to mention your precious child. Recognize that you have challenges to face, but remember to enjoy your child, and take pleasure in your life.
2. Be a little skeptical.
Seldom does any one professional have the complete answer. Have you ever heard the expression, “when you have a hammer, everything looks like a nail” (or something like that)? There are many terrific professionals out there who can give you a label or diagnosis and offer a treatment, but frequently, they are looking at your child through the lens of their own, particular specialty without necessarily having the expertise to see the whole picture. Even if they have the expertise, the only one who really sees what’s going on, the day-to-day ups and downs, is you -- so maintain confidence in your own perceptions and observations.
3. Accept that there may not be a clear diagnosis, explanation or solution.
What’s going on with your child, and what can you do to help? These are the questions that matter. The diagnosis is so much less important than the symptoms or behaviors that comprise that diagnosis. Sometimes, no diagnosis actually fits. What you need to find out is how to intervene to help your child with whatever discrete issues he faces.
4. Trust your gut.
Don’t worry about looking like a nut case. If you think there’s something going on, you should explore it. What’s the worst that can happen? You find out that there really was nothing wrong, so you waste time and money? Possible, but if you ignore your instincts and you were right, you could lose an opportunity to intervene. And with children, generally speaking, the sooner you intervene, the better.
5. Take care of yourself.
Ahhhh...Remember the person you were before you had a kid? Did you like to bike? Sing? Practice yoga? Take long baths? Don’t give it up! However busy you get tending to your child, do whatever it takes to avoid giving up the essential part of yourself that makes you “you.” Even if you think you’re giving things up in the name of helping your child, without self-care, eventually you are likely to grow bitter and resentful -- and that’s certainly not good for your kid!
6. Admit conflicted feelings to yourself, and share them with someone you trust.
One minute, you will resent your child with every fiber of your being. The next minute, you will be sick with worry about her. Then all of the sudden you will think to yourself, "oh my gosh, I love this little person so much, my heart feels like it’s going to burst!" If you can’t talk about your conflicted feelings with family or close friends, find a therapist with experience working with parents of children with special needs. Don’t suffer the emotional ups and downs alone.
7. Don’t freak out because of a label.
Your kid with a new diagnosis of autism or dyslexia or ADHD or whatever is the EXACT same kid he was yesterday, the day before someone told you he had autism or dyslexia or ADHD or whatever! He didn’t suddenly morph from being your amazing little child into some horrible, wretched...thing! All that is different is that you now have a shorthand way of describing his difficulties to professionals, educators, and others who might have tools to help. And if you’re worried how they might react, keep in mind that you can control how, when or even whether to share that label with others.
8. Fasten your seatbelt -- it’s a wild ride!
You will have times when everything seems good, manageable, and stable, and you start to think, hey, this is easy -- I can handle this! But then your child enters a new developmental stage, and suddenly your world turns upside down. Expect this. Frequently. I’m not saying to live in fear of when the other shoe will drop, but realize that even parents of totally typical kids (if there are such creatures?) confront new struggles and challenges as their kids grow up. Find joy in your child’s journey -- it only happens once, and it’s over far too fast.