The biggest blessing I’ve received from this blog is connecting with other parents who live my life. Parenting a child with mental/emotional/mood problems is extremely isolating. Your child can act like an unleashed demon and is completely impervious to normal logic or consequences. You see other parents disciplining their children with seemingly effortless authority, and you wonder why those tactics don’t work for you. You’re on pins and needles when you take your child out in public. Then you find a forum like this and realize you’re not alone. It’s life altering. But most of the parents I’ve connected with are in pretty much the same phase of this journey as I am: you know what you’re dealing with and have a network of experts in place to help you. But what about the folks who aren’t there yet? The ones who are just beginning to have the “something is wrong” fear gnawing through their guts? So I thought I’d create a list of things I wish I had known way back when….a primer, if you will. I’m not a medical expert by any stretch of the imagination. I’m also completely lacking in personal experience in some areas, like ASD. But here is my compilation of things I wish I had known.
- You know. If you’re worried there’s something wrong, you’re probably right. Mommy radar knows the difference between a normal temper tantrum or meltdown and the kind with that unhinged quality that creeps into your dreams at night, whispering that “this is not normal!” If that makes you squirm a little, it’s time to do something. My biggest regret is that I didn’t act sooner and that I didn’t keep pursuing answers when I knew good and well that we didn’t really have it nailed down yet.
- No matter how unique, weird, unnerving or scary your situation is, odds are someone else has already dealt with it. It’s hard to see that when you’re just starting down this path; the situation seems immense and overwhelming. But it’s important to realize that you don’t even know what you don’t know at this point. You don’t even know yet what questions to ask. And that’s OK, because other people have already done a lot of groundwork for you. Take advantage of that. The day treatment center The Challenging One attended this summer had kids as young as 6, but I didn’t even know it existed until May (The Challenging One is 10), and it’s a mile from my house! Take the time to discover what resources are out there. I’m going to put a list of resources on a separate page so it’ll have a permanent home. For now, just try searching for “child mental health in <your city, town, county etc.>”
- You’re not alone. There are other people in your shoes, and they’re just as starved as you are for people who understand what they’re going through. A blog site like this is a great place to start. Online message boards dealing with your particular issue are another. There may also be “real life” support groups where you live. These can all be essential in reminding you that it’s not your fault and that you’re not a bad parent.
- Medication can work miracles. I’m not a doctor or pharmacist, so I’m not going to advocate for or against any specific med. I would just encourage you to be open minded. For some reason, we balk at giving our kids psych meds when we wouldn’t hesitate to treat them for any other chronic condition. Sure, as a society, our kids are overmedicated. But that doesn’t mean it’s not the right choice for your child. The right meds have been life-changing for The Challenging One.
- You probably won’t find the right med the first time. Psych meds aren’t like antibiotics that are proven to kill a certain class of bacteria. Some work for certain kids, some don’t. Some even make things worse. Sometimes one med in a certain class works while another doesn’t. Sometimes you need to try an entirely different class of meds. And sometimes the med that works the best causes side effects you can’t live with. I encourage you to work with a psychiatrist, even if you adore your pediatrician as much as I do. It gets pretty complex, especially as you step out of the commonplace meds for ADHD and anxiety/depression.
- If you do decide to try medication, get an explanation of what things should look like if the medication is “working”. I was reminded of this again yesterday when we met with our psychiatrist. Even though The Challenging One has had some backsliding, things are so much better than they were at the beginning of the summer that I wasn’t too worried. The psychiatrist, on the other hand, was shocked. She said The Challenging One absolutely should not be having that level of anxiety on the meds he’s taking. Oops. So we made some changes.
- You know your child best. As another blogger recently reminded me here, nobody is more of an expert on your child than you are. It can be such a relief to finally find help that it’s tempting just to hand it over to the expert. But you’re the parent. You still get to decide whether you are comfortable with a diagnosis or course of treatment. Ironically, this is hardest when you have a good relationship with a particular doctor; once you’ve worked together for awhile and established trust, it can be hard to reject their advice. But if they’re as good as you think they are, they’ll roll with it.
- Other parents aren’t going to get it. They can’t. They’ll either think you’re exaggerating or that you’re just not disciplining correctly. Go ahead and develop thick skin now…you’re going to need it. I’ve chosen to be very open about our situation and to educate other parents whenever I can. You may prefer to keep things private, and that’s fine. I just encourage you to have an exit strategy, which I”ll talk about next.
- It’s crucial to know how you’re going to handle the nightmare scenarios. What are you going to do if you’re at the playground and your child’s evil twin makes an appearance, yelling at you, refusing to listen, being aggressive with other kids, etc.? What will you do when your preschooler refuses to get in the car, and you can’t get him there without putting the baby down? What, if anything, will you say to people watching? These things will happen, and it’s best to plan for them before they do.
- Document, document, document. I have my “Big Binder of Everything” for The Challenging One. It contains achievement test scores, report cards, results of psychological testing, communication from doctors and teachers, etc. What it doesn’t contain is a record of all the meds we’ve tried, how well they worked, what the side effects were, etc. I’d give a lot to be able to go back and correct that lapse.
- Don’t quit! Since these kids tend to save their worst behavior for home, it can be difficult to convince even the best doctor that things are really as bad as you say they are. Keep pushing. Keep asking questions. If you still don’t get a supportive response, switch doctors. But save that as a last resort, because you have a great tool already handy: your phone. (Remember the part about documentation?) Record your child’s behavior. If it’s not feasible to stand there and capture video, just set the phone down and let it pick up audio. We didn’t have smart phones back when The Challenging One was little, but I’m certain we would have gotten help sooner if I had been able to show people the behavior I was describing.
Those are the “biggies”….all the ones I wish I had known. There are others, and I may come back and add to this list from time to time. I’m also going to make a resource page, and I hope to have started sometime today, although I’ll keep adding to it whenever I find good information. For now, I’ll recommend my go-to book: Kids in the Syndrome Mix, by Martin L. Kutscher M.D. I love this book because it recognizes that there is a tremendous amount of overlap (symptoms fit with more than one diagnosis) and co-morbidity (diagnoses that that tend to go together) in children’s mental health. My son has characteristics of many and a definite diagnosis of none; he just doesn’t fit into a neat category. This book helps by putting it all in one place, covering:
- ADHD
- Learning disabilities
- Autism spectrum disorders
- Aspberger’s
- Anxiety and OCD
- Sensory integration disorders
- Tourette’s
- Depression
- Bipolar disorder
- Oppositional defiant disorder
- Central auditory processing disorders
If you suspect that something is wrong but don’t know what, this book is a great place to start. If the hair on your neck stands up in a certain chapter because you recognize your child, that’s a good place to do further research. (Full disclosure: This link goes to my Amazon affiliate page. If that bugs you, I totally get it…no worries. I encourage you to consider buying it independently or getting it from your library.)
Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar, and More!: The one stop guide for parents, teachers, and other professionals
Edited to add: I just downloaded and read the first part of a book that I think will challenge Kids in the Syndrome Mix for my #1 spot. While Quirky Kids was published in 2007, I just now stumbled across it, and I wish that had happened sooner. It’s aimed specifically at parents who are just starting to suspect that their child might have a problem.
Quirky Kids: Understanding and Helping Your Child Who Doesn’t Fit In- When to Worry and When Not to Worry
I'm a mom to three stair steps (all 3 born in under 3 years), one of whom struggles with OCD, ADHD and a few other things. I wrote professionally for 12 years before quitting to stay home with my kids.
Life on the Stair Steps 
I love the title of this. And I love that you are extending a hand of understanding to parents out there who might really need it right now. That is one of the really great things about the internet.
Thank you! And, yes, the internet can be a lifesaver.
Beautifully said. Thank you so much. I have found more connections, support and encouragement since joining the blogging community and sharing our journey. It’s given me resources I would have spent years searching for.
Thank you!