Here are the first steps

Your child was just diagnosed. The doctor has left the exam room. They shook your hand, told you to follow-up in six-months or a year but be sure to call them if needed.

Then they walk out.

You walk out as well, because that is what is expected. You are either pushing a baby carriage, holding tight to your toddler’s hand or trying to get your teen to look at you.

Your heart is in your throat. You want to throw up, but know people frown on that in public. You are doing your best to make it to the parking garage, to drive home, to get into the shower before you lose whatever strength is holding you together.

You cry, ugly and silently. You ask, what the freak do I do now?

This isn’t a perfect to-do list but I have found the steps help me (each and every time my world implodes).  Here are my 10 steps to surviving this unexpected life:

  1. Cry, but give yourself a time limit otherwise you won’t stop
  2. Find one or two friends that are your safe place. It may or may not be your spouse, and that’s okay. You need 1-2 people in your life that you can say anything to, that will listen and not judge but will also give you honest feedback when you go off the rails (cause you will)
  3. If your child has a learning disability find someone who can help you understand the IEP/504 process, especially comparing your IEP to the progress report/report card
  4. Allow yourself to be completely and utterly pissed off, but again give yourself a time limit so you do not become bitter
  5. Get counseling, for you and your spouse and the siblings (in the effort to remain honest, not doing this one but I can see the need). The point is, do not be afraid to seek professional help if you need it.
  6. Keep your marriage your #1 priority. It sounds silly, but if you solely focus on the child your marriage will fade and no longer be your safe harbor. Easier said than done, but trust me on this one.
  7. Don’t laugh when someone tells you that you need to find time for you. I completely understand. Finding time for me is like trying to find the Leprechaun’s Gold at the end of the Rainbow. Here’s what I did:
    1. Pancakes every Saturday when Louise or I are available
    2. Once a month I meet with 3-4 friends from High School for drinks/appetizers after Bridget is in bed
    3. Spend 5-10 minutes a day messaging friends for quick updates
    4. If you can find 30 minutes a week for alone time. I haven’t done this in too long, but if you can find 30 minutes just to sit and do what you want every week (going to the grocery store does NOT count) you will find yourself more centered and patient
  8. Question doctors and therapists and educators who think they know more than you. Do not be intimidated, they do not know your child only their diagnosis
  9. Find ways to volunteer. Before you say you have no time…I work 40 hours a week, I have Bridget and her sister (and the sister’s homework), I am responsible for 100% of the grocery shopping and 90% of the housecleaning. I am an elected official in my town. I am active in the PACS1 community.  I still find time to volunteer. Not every day, every week or every month. But volunteering gets you out of your house, out of your mind and allows you to interact with others. You do not need to lead the volunteer effort. It can be as simple as attending a PTA event. But get out there, and give back because you will feel rewarded in ways unimagined.  Just don’t go as crazy as I did with civic service!
  10. Believe in yourself. Listen to others, but your gut more. You know your child and your family and what works for you.

You can not lead a life with a challenging or unique child by 10 simple commandments, not matter what the religious will try to tell you. The above list has worked for me, it has helped create balance and if not balance at least a sense that my life isn’t swirling out of control.

If you had one thing to tell someone, on how to handle what life throws at you, what would it be?

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