Very early on in Emma’s diagnosis, I got connected with two organizations that had online communities.  I  became very involved with them through email.  I started friendships.  I received advice and encouragement.  That support has meant the world to me.  No joke.

If you are a parent of a child with special needs, my advice to you is to get connected. You won’t be sorry.  Google whatever syndrome it may be, and see where you end up!  One of my groups is through Google…it’s so easy to stay connected with them, and there’s always someone there to help answer a question!  The best thing about forming these bonds is that these people know exactly what you’re going through.  Seriously.  Everytime I have a question, someone has “been there, done that” and has taken the time to help me with it.  There’s no comfort quite like it.

If you want to take that “connection” one step further, attend a conference.  Emma and I have the amazing experience of meeting my “online friends” this summer at the MAGIC Foundation annual conference outside of Chicago.  I can’t even begin to tell you what an amazing time I had.  We were part of a huge family where no one was looked at oddly…no rude comments were made…no explanations had to be given.  It was truly magical!  During the day, I would attend educational sessions with doctors, psychologists, etc.  Emma had a blast in the day care that was provided right down the hall!  At night, they put on wonderful dinners for everyone to attend.  There was dancing, games, music, and more.  Truly fun for the whole family! And since we were out there, we spent an additional 5 days in Chicago and had a BLAST!!  (wonderful city, by the way…I’ll be going back!)

So in the end, my advice is to get connected with your community.  Let me know if you need help!

Emily and Emma at the MAGIC Foundation

A field trip to the local water park in Illinois.

I am SO lucky to call these ladies close friends! They "get it"!

Are you connected with any groups?

Be Sociable, Share!

•