Deep Breaths......

In through the nose, out through the mouth....in and out, in and out....
I'm feeling overwhelmed.  I'm just trying to keep my head above water lately.  Last week, one of
A's good friends and fellow trooper passed away suddenly.  He was going to be turning 40 on May 16th, which happens to be A's birthday as well.  A took this very hard.  Actually, even I have been taking it kind of hard.  I won't lie, I've done my fair share of crying to myself.  It was so tragic.  It's amazing how close to home it felt.  I have the tendency of being very independent and sometimes forget how much I rely on A.  Not just for help or his opinions, but for his company and love. I just can't imagine being suddenly left to do it ALL alone.  My heart weeps for his family and friends, including my husband. 

Last week, L's cardiologist called and moved back his surgery to June 11.  I'm beginning to get nervous.  In my head, I know that this is a simple surgery that is preformed over and over.  But deep in my belly, I'm scared.  Will I be able to be strong for L when I see him small and sweet laying in a hospital gown?  I am trying to be as strong as I possibly can for this little guy, but inside I'm a bit of a hot mess! 

This week, I had an appointment with a new hand surgeon.  I can't remember what I've mentioned before (and am too lazy to go back and look) about my right thumb.  My Ehlers Danlos is acting up in a big way again and my thumb has been consistently dislocating.  Anymore, I am in so much pain, by the end of the day, it is three times swollen, painful and basically useless.  I went to a Dr here in Wooster about 8 months ago to get a brace and ring splint to try.  Two months ago, I was at the point where I can't barely squeeze a bottle, open a door, or push a shopping cart.  I went back to the same Dr and he said I needed to have the joint replaced.  However, when I went to schedule my surgery, he was a little nervous doing it with my ehlers danlos, so he suggested a second opinion.  My second opinion appt was Wed.  Basically, I have three choices: Replacement: this option involves using my own tendon to make my joint and using soft tissue comes with the potential that it could stretch out again.  If this did happen further down the road, I would have no other options available to me because my bones would be gone.  Fusion: they would remove the cartilage in my joint and put a pin in it, limiting my motion.  This is not really the greatest option because I lose mobility, however, it is the most sure fire choice because it would insure it would stay repaired for the rest of my life.  Or, the third option: Do nothing.  Doing nothing may be a short term plan, but it certainly won't be a solid long term plan.  I am going with the fusion.  I'm terrified.  Just thinking about losing some of the mobility in my right hand makes my stomach flip.  Trying to be levelheaded, I admit the motion I will be losing probably won't be as bad as I think it will be.  But I also figure I don't entirely realize how much I actually use that motion at the same time.  Does that make sense?  I'll probably be able to manage almost all things fine, but I'm sure I'll be surprised how much I used that motion as well. 

I hate complaining on my blog.  Sometimes, I just have to get all this stuff out and I know my poor friends and family have listened and dealt with all my crazy freak outs to their limit.  I get it.  Now it's the entire Internet's turn to enjoy my major panic attacks.  Thankfully, almost all of the Internet doesn't read my blog...so they are spared!  :)

We are going with Autism

I think I've mostly shared our journey with L so far on my blog.  Basically, we've struggled with behavioral issues, some developmental delays, and social problems with L since, well, as long as I can remember.  I've had a nagging thought in the back of my mind that something beyond all of our control was happening with our little L.  About a year and a half ago, we went ahead and did the ADOS testing for L.  He tested just barely positive on the autism spectrum.  The neuro-development doctor gave us a few suggestions and a follow up appointment in 6 months.  One of the suggestions was a parenting program called Triple P (Positive Parenting Program).  Being that we live an hour away from the doctor's office, the had a social worker call me and give me a list of two or three places in my town that offer similar programs.  Well, I called all of these places countless times, left messages and talked to a ton of clueless people.  Finally, I talked to our pediatrician and she suggested a therapist.  So we spent 6+ months in family therapy.  While some of it was helpful, I kind of felt like all we were doing was allowing L to interrupt all of our conversations with the therapist and we didn't get very far.  Our six month appt. with the neurodevelopment doctor decided to give it another six months.  We got busy with life and didn't continue therapy.  Next six month appt, L had been in tri-county preschool for a few months with assistance and school was going fairly well.  L was still showing characteristics of autism, but his imagination had finally started to develop some (he does do SOME imagination play, but it tends to still be very literal), so the doctor said he'll see us in 6 more months.  Recently, things have gotten really difficult.  I decided to go back to the therapist in desperation.  Suddenly, I understood why doctors prefer to wait till kids are a little older to diagnose them.  Now that L is more verbal and a little more mature, things have become clearer than before.  He's been having tantrums that are more violent and even harder for him to settle down after.  Eating has always been a big problem for L and it continues to cause us a lot of stress.  We also started hearing some bad reports from his teachers at school.  It seems like for L, he really WANTS desperately to have friends and get along with other kids, but he just doesn't understand how to connect.  One of the bigger problems we've noticed is that he has a real difficulty with emotions.  He seems to know what the social acceptable response is at times, but he doesn't really understand the meaning behind the response. 

We went to L's latest neurodevelopment doctor appointment last week.  We went over everything with the doctor.  Let me say, Dr. Hull at Akron's Children's Hospital is really great.  He takes as much time as you need with him, never rushes, and interacts very well with the kids...I've been very impressed by him.  He felt that because L still has quite a bit of autistic characteristics and tested positive on the ADOS test, now would be a good time to put an official diagnosis of autism on the records.  Dr Hull felt that letting L go to school without a diagnosis may put him at risk of being labelled a trouble maker when there was more going on than him just being trouble.  Surprisingly, A didn't even disagree with that statement.  I was completely shocked that A was completely on board.  Since the last time we tried to participate in the Triple P program, Akron Children's now sends someone to Wooster once a week...which is so amazing!  This makes things so much simpler on us.  I was willing to drive to Akron and do the class, but being in Wooster and amazingly on A's day off is perfect.  Now we both get to go and learn some new things!

So how do I feel about all of this?  I'm still trying to come to terms with my feelings.  I have been pushing for something....not sure exactly what, but something, ANYTHING.  Be it autism, ADHD, or nothing.  We just needed some direction.  I am really relieved to have a plan in place.  In the year and a half since we started this journey, all I've ever wanted is for us, as parents, to be able to help L become a successful, happy, healthy little boy.  I am excited to start the Triple P program (the section for parents of autistic children is called Stepping Stones).  I still feel a little sad that all of this is happening to L, but I am positive that he will be fine and that we are on the right path to finding some maybe a little peace.