Sep 19, 2008


Let me say that again... SIGH!!! What a week! A very long week! I would like to say it was a glorious, victorious whopper of a week. But actually I feel a bit beaten up! I hate it when everything seems to be going well and WHAM! you get a good swift kick to the gut. You know the kind...the kind that either knocks you off your feet, knocks the wind out of you or both!
Not sure which I got this week but it sure was a nasty hit. Let me explain because I haven't actually blogged about it. This week out of no where we get a note from the teacher. Now last week when I talked to the teacher she just said Kristofer gets frustrated sometimes. So the letter we got this week was a huge hit. It basically said, that he has not only been getting frustrated but having huge meltdowns and crying episodes. He never did this last year or not that we were ever told. So what is a momma to do...go to bat for my kiddo. I go in and talk with the teacher the next day after I called his OT who gave me her home number in case of situations like these. Then later the same day I talked with the teacher some more and then talked with Kristofer's resource aide that works with him daily as well. They paint this picture of a child who is extremely stressed and frustrated. Naturally that upsets Momma!
So we figure out some things to do to help him. In the mean time today was
the big evaluation at SIUC. There Kristofer was taken into a classroom where Melanie one of the evaluators and three others worked with him. Actually the other three were taking notes. I was in an observation room watching and talking to Dr. Bordieri who asked me a bazillion questions, I swear. Every one at the Center for Autism Spectrum Disorders are great! They make you feel at ease and take time to listen to what you have to say. I truly believe God ordained this time for this moment at this facility.
So we went, were there for like 2 to 2 1/2 hours and then came home. We now have to wait for the next week as they decipher and score the results of the evaluation. The hardest part now is going to be the waiting.
For those that have gone through this process any advice or suggestions would be great! For those that haven't let me just share that this has been the longest 6 years of our lives. Yes 6 years because from the time Kristofer was born there was something different about him. Oh don't get me wrong please, he was a cheerful happy little guy as long as we were following his schedule. If we were not home on the dot to put him in his bed for naps and bedtime...he was a mess. There are so many things I could say here but won't go through it. But when you deal with a child that has special needs it is draining. What is worse is when family members think you are crazy and that there is nothing wrong with your child. "You need to discipline him more, be firmer, ect...You're just doing what a good mother should do" Yes I heard those things! From people who were suppose to be supporting me and their nephew! It hurts when you hear them say, that kid needs medicine, that kid is a brat, or I could never deal with that. Well let me tell you kid is not a brat! He is a joy to have and if he needs meds (which he doesn't right now) then we will do what needs to be done.
Honestly I am so emotionally spent this week I am not sure what I want. Yes I truly want to be told "No we don't think he is autistic!" BUT we need clarity as to why his behaviors mimic autism! Ok let's be honest, there is a part of me that would like to hear he is on the autism spectrum just so I could say, "I told you so to those people that have questioned my parenting skills!" But in my heart I do NOT want him to autistic. No parents stands up and says, "yes please I beg you give me an autistic child." NOT that autistic children are trouble or a curse. Because they are not! They are God's creation and there for created in His image and are perfect in His sight! There are not many people that will stand up and honestly say, they were overjoyed to get that diagnosis! I have two college roomates that have one or two children that are autistic and another that has a child with SPD. They are very strong advocates for their children. They have dealt with the sorrow of the dream of a certain life for their child and watched it be changed to something else. They have been strong and faced it head on and for that I am grateful because they have been the support I have needed...thank you Mike & Marty Short, Angie Young and Mary Fontelez! Little did we realize 14 years ago that not only would we become the best of friends but also friends that have special needs kids. What an adventure we have all been on!

For those that wonder if your child needs early intervention GO GET IT! FIGHT FOR YOUR CHILD! I was told today by Dr Bodieri that the intervention Kristofer has received has given him a huge advantage over the child that hasn't received therapy or any kind. I know for sure had we not listened to our friends and pushed for therapy that Kristofer would not be the same little boy he is today!

He is such a trooper! He deals with so much all the time. He amazes me! He really does! Yes he wears me out, yes he drains me physically and emotionally when he has his outbursts, yes sometimes I get very aggrivated that he doesn't understand things that other kids his age do, yes it makes me fighting mad when other kids tease him and make fun of him or won't give him a chance! BUT this great kid of mine is my heart throb! He and I have a connection that is different from the other kids. I love them all equally and I would stand in the fire for each of them. But somehow Kris and I have a connection that he does not have with Sean and I do not have with the other kids. Call him my because they are all my favorite but...ok yes I have a connection with him that is special and unique and I am blessed to have this remarkable little boy as my son! I am proud to say KRISTOFER IS MY KID! I am proud of his accomplishment and I am excited when he meets a goal.
Everyone that knows our Kristofer can't help but love him. He is such a great kid! A little quirky at times but a great kid never the less!


Michele said...

Running RIGHT beside you- You are not alone in this

Melissa said...

Thank you Michele! You have been such a great support!