April 10, 2013

First Steps First...Breathe, Then Act

As a parent, you feel devastated and overwhelmed when your child receives a diagnosis of a developmental disability or mental illness.

I know I did. But do you know what else I felt, even though it seemed an impossibility at that moment?

Validation. Hope. Determination.

I already knew that something was wrong with The Boy - it was helpful to put a name to the array of symptoms/behaviors he was experiencing. Sure, it was upsetting and scary, but the diagnosis offered a glimmer of hope - that I wasn't overreacting to his problems - I wasn't imagining his difficulties. Better yet, I found that there were people who could help the both of us.

I don't want to minimize the sadness and devastation I felt - I grieved for the life my child might have had, I grieved for the lack of playdates, for birthday parties without an invitation, for family members who just didn't understand my initial sense of despair (or those who thought I was too lenient - all my child needed was a good spanking or other sort of punishment).

It's especially hard if your friends' kids are about the same age, and you see their kids meet milestone after milestone, while your child is marking time instead of moving forward.

The diagnosis means hard work is ahead - but it also allows you to feel hopeful - that there is somebody, somewhere who can give you the tools and the therapies that will help your child make progress. There are other parents who have traveled along this road; they can offer hope and helpful tips and give you a safe place to talk about your frustrations and fears.

Now where do you find these good people?

When you're ready to find answers and get help, your own determination is your biggest ally. First and foremost, learn all that you can about your child's condition. The internet can be a great resource. Agencies do not come, looking for participants. Use your dogged determination and get to work! You can do it!

Here in the St. Louis, Missouri area, there are several agencies and organizations who can help. Here are a few (some we've used, are currently using; others we haven't hooked up with):

The St. Louis Regional Center. That should be your first call. They offer service coordination through your child's case manager for St. Louis City and St. Louis, Jefferson and St. Charles counties. They are an excellent resource for services, practitioners, support groups and assistive technologies.

Your county's Developmental Disabilities Resource Board (DDRB) is an excellent source of information about services in your local area. They can get you in contact with folks who specialize in therapies as well as provide respite funding so you can take care of yourself while you pay someone else to take care of your child. We've used our respite funding so The Boy can go to sleepaway camp for a week - I call that MY vacation!

Jefferson County DDRB
St. Charles DDRB
St. Louis ARC

Your child should have fun while they're learning new skills - several agencies offer recreational and art activities, as well as the opportunity to participate in Special Olympics. Your heart will swell with pride and you'll be filled with admiration for the athletes who give it their all in every event, no matter what their disability. The Boy participated in swimming, and enjoyed himself - but once was enough for him. He retired from competitive swimming as soon as he was awarded his medals.

If you are interested in services for toddlers and school-aged children, contact MPACT. It is a state-run agency that offers training and consultation regarding special education laws. Educating a child with special-needs is a challenge - they can make sure that your school district is providing the types of services your child needs to be successful in school (and in the case of toddlers, before they get to school).

I am on the list to be certified as an MPACT Parent Mentor.

For autism services, try one of these organizations:

MO-FEAT (Missouri Families for Effective Autism Treatment)
Behavior Intervention Services
Touchpoint Autism Services

If your child is diagnosed with a mental illness, you can get information and support from NAMI St. Louis.

This is not an exhaustive list of resources, but it'll get you started.

Keep your head up and your eyes on the prize - the best possible outcome for your child. Don't give up hope! Help is available, and you'll meet some amazing people along the way. I hope I've given you a good starting point on your journey.


  1. Kim--I have a serious mental illness vein running through my biological family (I'm adopted). It's heartbreaking enough when it's siblings and parents. When it's one's own child, it makes it a really rough row for you to hoe.

    My hat's off to you.

    1. It's hard to see him be out of control, and harder still to see those in authority take control of him when he can't - but sometimes, it must be done.

      He's learning some self-control, and I think he's maturing a bit. His meds seem to be on track, and he's doing well in school. It's not the childhood/adolescence I imagined for him, but it's not half bad.

  2. Thanks for this info. I will share these resources with others. I know it's been a wild ride for you. Hang in there. You are an amazing woman.

  3. For those who need it, you've provided a nice wealth of information and... hope.

  4. Devastating as it is, your post offers what another mother yearns for the most - an outstretched hand, acceptance into a club they didn't choose but knowledge that they are not alone and validation. That in the midst of the daily judgmental looks (which are really masking the terror people feel - the little niggling feeling that it could happen to them so it is easier to place blame than admit what terrifies them), there is a safe place to come for validation.

    Carry on, Warrior. You are doing great.


Thanks for stopping by. I love your comments...I get all warm inside just reading them!