Wednesday, April 22, 2009

After the Diagnosis - What I wish I could tell you

My son has ADHD. We’ve been to multiple doctors, psychologists and now a psychiatrist. This diagnosis is a culmination of about a year of seeking professional help, and 2 years of us saying there was “something” and being told that no, he’s a boy, etc etc.

I thought, stupidly, that once we had a diagnosis, once we could say to our family and to teachers and coaches that our son has “special needs” that people would understand and give him a break. But, instead, in some ways, it’s harder. And, I think part of it is that people aren’t quite sure what to do. So, here are my suggestions as someone going through all of this.

1) Be supportive Be there for us and understand that as wonderful as it is that we have an explanation, we’ve just been told that our child has a psychological issue that there is no cure for and that medication may or may not help.Right now I can’t get enough of the people who tell me “you’re doing a great job and you’re doing amazing things for your child – good for you.” I need to hear that right now because in a way I feel like I’ve somehow failed my child (even though I *know* I haven’t.)
2) Knowledge is power, so keep some knowledge to yourself. Information is fantastic. I appreciate that you are trying to help if you give me articles on ADHD. I get that. But. What I don’t need right now are articles that:
a. Tell me that ADHD is made up so that the drug companies can make more money. I know that people believe this, but articles like that do not help right now. We’ve spent 3 years searching for a diagnosis and have one.
b. Blame me as a parent. I understand tv may contribute to ADHD. I understand that my traumatic birth may have contributed to this. I understand that even having post-partum depression may have contributed. Seriously. I FEEL BAD ENOUGH. No need to reinforce it. Also, I've probably read it.
c. Googled - with no source. If it’s an article that you pulled up by typing ADHD into google – I’ve probably already read it. I’ve been researching this for years. I’ve read the books, articles & briefs and listened to the podcasts. Also, I’ve spoken with the doctors. If you have an article claiming something "cured" ADHD. Probably not accurate.
d. If you really have to share the article with me that’s fine. But be discreet. Don’t hand me an article saying I caused my kid’s ADHD and then expect me to discuss it. This is an emotional issue for me.
3) Ask us what method we’re using and if there’s any way you can educate yourself I am so happy to share the method we are using. For us the book that is our Bible is “The Explosive Child” by Stuart Ablon. The method in this book is fantastic. It literally changed by life as a parent because for the first time I understood my child. When I researched psychologists for my son I called his office and asked for a recommendation. Our school believes in his method and they use it with our son because it is what works for him. The basic premise is that kids do well if they can. This book is amazing and I’m grateful I discovered it. I’m happy to lend my copy to people who want to read it. But, please, be on the same page as me. Understand why there are rules that I don’t enforce. Understand why I don’t believe in time-outs and I try very hard not to get angry. It’s a couple hours of your time to understand the situation. Please, take the time.
4) Opinions are okay, but tread lightly I know medication is a complicated issue. As is naturopathic medicine. As in any approach you take to a problem. I’m not opposed to hearing another side. But, it needs to be done gently.Think about what you’re going to say and if it’s really necessary. And remember that as parents we are doing out best. Please don’t assume that we aren’t agonizing over every decision. I don’t want my child on meds either. I know the dangers of Ritalin. I’m getting 2nd and 3rd opinions from medical professionals before I do anything here. So please, don’t talk to one person who knows someone who was once on medication and had a problem – and then relay it to me like it’s something I don’t know.Ask yourself – do you really think I would put my kid on drugs for his brain without thinking it through? NO.
5) Want to help? Here’s how The biggest help right now is to treat my kid like he’s normal. In fact, treat him like the super incredible amazing kid that he is. Of course there are areas he’s not successful. He can’t sit at a fancy restaurant for an hour and behave. He will have a meltdown, everyone will get angry, and he will feel like he failed you.LET HIM BE SUCCESSFUL. Take him to the playground and let him show you how he’s mastered sliding down the fireman’s pole. Let him take you for a walk. Have him tell you a story. Let him show you his drawings or how he prints his name. Ask him about Star Wars or about animals. Play with him, at his level.Want to eat with us? How about asking if he’ll help you bake cookies. And let him do stuff like crack the eggs (instead of worrying about the mess), mix the flour and have “taste tests”. Your reward will be some giant hugs and a kid who feels loved. And when you’ve done all those things, tell him what an amazing kid he is, and then come and tell me. Please. Because I love my child more than life itself, and I am so proud of him. And, I need to know that what I see in him, is what you see in him.


SciFi Dad said...

I'm glad you got an answer; it may not be the one you were hoping for, but at least now you know what you're dealing with.

But... people actually blamed you? Honestly?

(Oh, and if I see him I will NOT treat him like a normal kid. I will treat him like the young padawan that he is.)

Kerry J. said...

I loved reading this LD! You know that I think both you and Matt are amazing (frankly I'm fond of all of you!). Hugs my friend!

citygirl said...

I'm always here with a smile, a hug or whatever you need.

p.s. I had situations with people giving me articles and telling me about cures for Alzheimers in the past and it made me want to strangle them. Really, there's a cure for Alzheimers? Wow, I hope the rest of the world finds out!

Steph said...

I don't know you in person but have been following your blogs for awhile now and you are an inspiration. What a wonderful post.

Anonymous said...

In defense of people sending you articles... Sometimes it's the only way they know how to deal with the news, and honestly want to help. My sister-in-law was diagnosed with cancer, and all I could think to do was send her information I found online.

Of course, people shouldn't blame you, but I think sending articles is their way of showing they're interested, they care, and they want to help.

Laural Dawn said...

I totally get where you are coming from, and I appreciate the information. And, I totally get how it's caring.
What I've found hard is when I've been given articles and been put on the spot to discuss it - and the content basically says that this is my fault.

Ginny said...

Hey, if I could I would walk across the hall, knock on your door, sit down with you, have a cup of coffee and cry. Mostly because I'm crying for you right now and I won't lie, I'm crying for me too. I know you feel bad enough, that's the part that got me crying because I can relate to that 110%. I wish I had answers with Mackenzie but you have shown me that answers aren't the end, they are only the beginning.
If you ever need a shoulder call me because chances are I'll need one too.
PS - would love to get together to discuss Explosive Child. Need to discuss with someone other than James!

Mighty Morphin' Mama said...

You rock LD, I am so impressed with you and you reminded me of something important. Let your child succeed. Give him every opportunity for success. Thank you. I needed that.

Leece said...

Great post LD! I sometimes feel like I don't always know what to say, but I will support you in any way I can and am always here to listen if you feel like talking about it. It helps me learn too. xo