I have an admission.  I’m anal retentive justabit.  So, for this post, since I am having a hard time organizing my thoughts, I will bullet the highlights.  And WordPress allows me to bullet.  Score!  Bear with my and my type-A mind.

• We (me and Em) had breakfast on Saturday morning with 4 other people from our Focus Families group.  Score! 2 we had met before, 2 we had not.  It was a crazy busy breakfast, but fun to learn about new friends, and catch up with old.  And the highlight of that breakfast (can I sub-bullet? no I cannot) Marshelle got Emma got swallow her capsules!! This is huge news.  Huge.  And she didn’t even have to convince her, bribe her, or sit on her! Score!
• We went to Stuffington Bear Factory and took a tour and built our own bears with the whole group.  So fun!!
  

  The girls (Emily, Emma, and Jewelia) and their bears!

• We spent the afternoon at the hotel with Marshelle and Karen and their granddaughters.  Girls were so cute together.  Seriously cute.  Marshelle and Karen and I caught up.  This is where my former tweet and facebook post about being with people who 100% understand you comes in.  Right there.  No explanations needed.
• We got to visit the exhibitor hall.  Let me just tell you about it.  I’m at the ACB (American Council for the Blind) convention.  The exhibitor’s hall was full of blind people everywhere!  Of course I expected it, but to experience it is something else!  Canes, guide dogs, human guides, everywhere!  We didn’t really find anything for Emma, as she really doesn’t need any visual aides.  I’m glad we went, though!  Girls also got to swim in the pool in the afternoon. It was hot!!
• Dinner was SUPAH! I felt bad because they wanted authentic Mexican, but I only know good places up by us, not in Downtown Phoenix.  But I got the name of a place from a friend of my Mother In Law.  And it was fabulous!  Authentic, delicious, and everyone was impressed!  Score!  The only thing they need to improve is their margaritas.  I’ve had better.  Just sayin’.  Ooh, I should’ve tried a michelada though!
• This morning was another breakfast with the gang.  So much fun.  Unfortunately Marshelle, Karen, and the girls head back to California today.  It was a quick weekend for them.  I’m hoping to meet up with Sarah this week, but we’ll see how things pan out.  It’s a lot of driving from my house to downtown.

All in all, a wonderful weekend!  We had so much fun and it was great meeting people that really do mean a lot to me.  I don’t know if they realize how positively they affect my life!  They’re like a breath of fresh air!  I still need to tell you about Marshelle…she’s a hoot!  And a hero!

How was your weekend?

I have to tell you about my weekend!  But I have to try to find the words to describe it.  I knew it would be fun.  I knew I would get encouraged and inspired.  But it was even more so then I thought it would be!  For those of you who are new to my blog, I belong to two groups that support Emma’s condition (SOD)  They are the MAGIC Foundation and Focus Families.  They provide such a wonderful support system to me.  Always.  Whenever I need it.  They were especially supportive in the beginning when Emma was first diagnosed.  Through the emails, you become familiar, friendly, and in some cases very close with these people.  3 of my close friends came out this weekend!  One I had never met before, and I was really excited to meet her.  I picked Sarah and her friend up at the airport.  It was an interesting meeting as we had never met before, and Sarah is blind.  I couldn’t hold up a sign for her, and didn’t want to call her name out!  Fortunately it was easy to spot Sarah and her friend.  They had guide dogs with them, and Sarah had also told me what they were wearing (Sarah and her friend, not the dogs!).  And from that point there was an ease to the friendship.  It was like old friends reuniting.  Except- and I did admit this to Sarah- I didn’t have any experience with bling people.  What should I do?  How do they need help?  She laughed it off by joking that first I needed to kiss her feet.  This was not going to be as hard as I thought!

To say that Sarah is an inspiration is a huge understatement.  She’s my age and living completely independently.  While she doesn’t have the hormone deficiencies that many people with SOD have, she’s got her plate full of other conditions that continue to challenge her.  But she never is down about it.  She doesn’t complain about it.  She does what she can and she does remarkably well.  She is a huge advocate for teaching children some independence.  It doesn’t matter how severe the condition is, every child can have some independence and it’s so important in their upbringing.  Sarah most certainly didn’t get to where she is today because she was sheltered and given everything she wanted.  She has worked very hard to get where she is.  And I’m sure it wasn’t rainbows and butterflies the whole time, she is who she is because of her wonderful upbringing.  And she emphasizes that to the parents on the list who may want to coddle their child.  I love that she speaks her mind, too.  She’s a smart cookie and isn’t afraid to share her knowledge or her experience.  She’s helped encourage me to push Emma to try new things.  Or to back off when I want to shelter her more than I should.  If I have questions about her schooling, she’s willing to offer her two cents.  And then there’s her dog.  Fargo is C.U.T.E.  And so sweet and well-behaved.  We became friends fast when he laid on my feet the first day at lunch!

"Fantabulous Fargo"

I haven’t even told you about my weekend!  Or my other friend, Marshelle!  I will save that for tomorrow.  It’s worth sharing!

And…did you know I took 909 pictures during our 11 days in California?  I need to go through and pick a few of my favorites to share with you.  We had a GREAT trip!  So stay tuned….I have  more for ya!!  Also, I wanted to remind you that I have a Facebook page and would love if you liked me!  You can visit me here.

Actually, there’s no real update for the IEP, other than it will take place on Thursday, February 11th.  2 weeks.  I ran into Emma’s special ed teacher and she asked me how I thought Emma was doing.  So I told her my thoughts (something I will share after the IEP is over with), and she basically said, “I don’t think that’s going to work.”  At the time it seemed very blunt and abrasive.  The tone shouldn’t have come out of the mouth of a special education teacher for a kindergartner, that’s for sure.  So I called Emma’s teacher…by the way, she’s also my roommate from college…to tell her about the conversation.  It was after she and I talked that I kind of switched my train of thought regarding Emma’s situation.  I was able to see it from a different angle.  Again, I’ll share with you after this IEP.

After that whole situation went down at school, I was frazzled. Stunned.  A little bewildered.  I had coffee with some good friends and they said everything I needed to hear. While they don’t live in our experience first hand, they’re aways able to say just the right things.  Or to give me different points of view.  Basically, they’re lifesavers.  I’m forever grateful to them for the support and encouragement they give me when I’m not able to provide it myself.  Love you girls…you know who you are!  ;-)

The moral of the story is that everyone needs a good support system.  If you don’t have one, life can be pretty tough (with or without a child with special needs).  That being said, they’re hard to come by.  If you have good friends, let them know how much you appreciate them!

I have now climbed off my sappy soap box.

What are the ways in which your friends encourage you?

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?