What if...

Yes, I have a daughter.  She is amazing, smart, funny, kind, happy and helpful.  She's also emotional,  attention-seeking, anxious, delayed developmentally, sad, and lonely.  I see photos on Facebook of girls her age doing things that girls do at 16.  They are cheerleading, playing soccer, basketball, having sleep-overs, texting friends and all the other things girls do.  (Including dating- yikes)  It makes me a envious, and a little sad.  Phoebe struggles socially with her autism.  She struggles to make friends, and keep them.  It's painful to live, and painful to watch.  Every child wants a close friend.   She doesn't really have that.  Every child deserves that.

With these struggles, my mind will wander to what life would have been like had Phoebe been born...well, normal.  (average- typical) It's not productive, but I do think it's natural to think this way.  Would she be playing sports?  Would she be a cheerleader?  Maybe.  Maybe not.   Then I come back around to thoughts that this child is amazing.  She doesn't play sports, but she certainly LOVES to watch them.  She loves Michigan State (who doesn't?), loves her Tigers (and all their names and stats- and sobbed when Austin Jackson left), loves the Lions, and simply loves most things Big Ten.  She has known the names in our family since she was 2 1/2 years old.  We would make lists of the names and she would point to them when we would ask.  She recognized everyone.  She'll remember where you live, your dogs name, your kids names, your spouses name, and whether you sleep alone or not. (Yes, that can be embarrassing)  She keeps me on schedule and on-task.  She never lets me forget anything.  She's an amazing big sister and makes sure her brother is well taken care of. She adores him.  

I don't know what the future holds for Phoebe.  Will she have boyfriends?  Get married?  Have children??  All doubtful.  However, she has proven me wrong before.  Her improvements this year are great, and I see her maturing slowly each month.  Even though she's difficult, and trying at most times...I'll take her.  She has made me realize that life isn't about all those things that didn't happen...it's about all the things that did. (and will)

Here's to you Phoebe.  My unique girl. 

You drive me crazy.  :) (I think that's normal?)

Small town life

We live in a small town.  Not a tiny town, but a smaller area.  I live in a great place to raise kids.  I really do.  I love that there isn't traffic, and that I was able to buy a decent house for a decent price.  I LOVE living by my family.  It makes all the difference.  I had the great opportunity to further my education right by my house.  I didn't have to commute.  It made it easy to change my career to better serve my kids.

Of course, there are trade-offs for these such luxuries. I need a decent Psychiatrist that understands autism, and specifically Phoebe's autism.  We don't have that.  I am not saying we don't have good Psychiatrists.  We do.  We just don't have the right kind for Phoebe, and not a lot to choose from.  Phoebe isn't a child that you can sit down and talk to.  She has anxiety about people talking to her/about her and in front of her.  It's weird, but it's her.  I need a psych that understands that.  One that can see me, and maybe her for a short time.   I need a dentist that understands Phoebe's special needs when there, and one that can sedate her for work that needs done.  I have a great one now, who can handle her at times for small amounts of work, and cleanings. (Seriously--he's good, but I can't even imagine how hard it is to do work on her when she's awake) I need a sleep study done, but can't find anyone in my small town who will allow for us to do it from home.  I can't imagine trying to get her to do one at a facility.  It's hard enough to get her to sleep.  Let's not mention that in order to take her to these things, I need to take time off, and get her out of school.  (Ok - that's a given with any office or appointment)  I can name about 5 other things I need, that only big name universities, or cities can give us.

I was told at the Yale Autism Clinic that this would be precisely the problem.  Good news is she has PDD-NOS (Pervasive Developmental Disorder-Not otherwise specified), and the bad news is...PDD-NOS.  There are not a lot of studies and research for PDD-NOS.  Every child with autism is different, and Phoebe is no exception.  Autism isn't a cold, or a flu.  It's not going away, and each year things change and I have to adjust.  (And so does she)  So with that, I'll be making appointments for summer, and driving her back and forth (to the big city) for various things.

Just when I think I can sit back and relax for a bit...

I am reminded that this is autism, and that I'll be looking for better things for her for the rest of her life. (Even if that does take me out of my little town)