Sunday, January 6, 2013

It's a New Year

Happy New Year! I am glad to be back on my blog grind, but I will admit to not wanting to write this post, but it's probably the most important post I have ever written in some ways.

The whole purpose of me writing the blog is to document what goes on in my family on the daily, weekly, or such as it is lately...yearly basis.

A bit of New Year's Fun

I don't have any witty intro this time...this fall has been a challenging one for our family and not necessarily in a bad way, but a challenging one. Bear with me. Our oldest son was classified with autism by our school district. Now one of the reasons I dreaded this post was because I don't hold myself out to be any type of Autism expert so I am not and cannot possibly answer all of the questions that arise by making the statement I just made in a blog, nor will I attempt to. I will give the abridged version of things for everyone. About a year ago, the teachers in our son's class came to us with concerns about his learning and behaviors and asked if he could be evaluated for Autism.

We had been down a similar road with our oldest child who was also enrolled in the preschool program and received speech and occupational therapy services. We took Sash to several doctors and many concluded her behaviors were "autism-like" but no one ever concluded she was autistic and she eventually went from one end of the spectrum to the other-literally. I still have the bell graph the school psychologist drew us when she attempted to explain how two years prior she stated our child was permanently learning disabled to then stating she was practically gifted. Anyway, not trying to digress, but wanting to give you a bit of perspective on where we are as a family on autism, ASD, etc...

So on November 16, 2012 a panel of educational experts who had observed our son over a period of time, concluded based on the educational definition, our son meets the criteria for the classification of Autism. For anyone unfamiliar with classification verses diagnosis-classification is is used when the schools are trying to see if a student qualifies for certain services they can provide. A diagnosis can only be provided by a medical doctor. We are still going through the process of getting a medical diagnosis. It's easier said than done.

First of all, for us at least, we started the process a bit late. Then when we did start the process, I learned the department of the children's hospital here in DE that handles Autism is not accepting new patients at this time. I took my search to Pennsylvania and the wait list at the Children's Hospital in Philadelphia is 9 months to a year. So the good news is, the ball is rolling, the bad news is, it's a looooonnnng roll.

Shortly after the school's classification we learned our son also has a seizure disorder which explains why he has not slept through the night since birth (actually before birth if you count the time in utero that he did not sleep). Anyway, after an EEG and a 23 hour EEG with video sleep study that showed Scorey having seizures, he is now on medication that helps him finally get the sleep he has been missing all this time.

There were many medical challenges in 2012 and I am not sure what 2013 will hold, but it doesn't matter. We are blessed with life. I am thankful for so many things. I know it sounds cliché, but it's true. We are short on money, long on bills. Days are long, nights sometimes longer. I know I need more patience with my kids and my dog...speaking of which, someone told me he has a blog--go figure!

We are living the life we were blessed with. I look back and smile at the time I lived in NJ.  I remember holding my oldest rocking her to my favorite Stevie Wonder song thinking "if this is life, then we have this thing in the bag! It could not get better." I was did get better. It also got more complex-not necessarily in a bad way. This is what life is. It's messy, it's confusing, it's frustrating...and the best thing, if you are blessed, you get to keep doing it over and over. I have NO clue what the future holds. I have a stack of papers that looks like an encyclopedia that I need to complete for Scorey to be seen at the children's hospital in Philadelphia. I'm thrilled...

No, really I am! I have a friend around the block with a son in a coma. I have a friend who just lost her nephew in what should have been the best time of his young life. I have another mom friend who lost her husband in November and just spent two months praying and willing her daughter back to health. We lost 27 beautiful...BEAUTIFUL lives in December to senseless violence. I am thrilled to trudge through papers and questions about autism, behaviors and milestones I can now hardly remember.

I'm going to go put on my favorite Stevie Wonder song again and now I am wise enough to know this is not the best life has for's only the beginning.

Some of the beautiful faces I get to see everyday

Happy New Year everyone!