I remember the first report we ever got back. There were no warm segways into what was printed. Just plain old numbers. Numbers which clearly read the facts. Which all boiled down to a diagnosis. Which was Autism. And it killed me to read them.
I took those first reports, taking my 2 year old and ranking him within the normal ranges of a 11 month old in areas. And I swore that Luke would never see them. I hid them deep in a file folder and closed it. And its been years since I saw them all again.
Tonight was that night, over 3 years later. And though I also get to read updated numbers, letters and reports on how far my Son has come, its still hard. Facing the hard truth as it hits you in the face, yes for me it is hard. And I hate doing it. Especially when its about someone I love more than almost anyone or anything.
I hate that Luke has been put in the position where people are constantly "grading" him and "studying" him. That they're watching the things he does, putting pen to paper and jotting down all sorts of notes about them. And him.
And as we prepare for another huge day of observations, which I dread, I must open all of these notes and circles and grades. I must read them and bring them along for others to read. And once again my Son becomes less Luke and more of a case study. Of a 10:00am appointment on some one's schedule.
So here we go. Round 5 or 7 or even 10. I lost track. I will bring my beautiful boy to you and I will allow you to judge him and talk about him though he's not there. I will express to you all of the things that I worry about every single day. I will tell you in detail about his latest melt-downs and his problems with socializing. I will tell you all of the things that I dont want Luke to ever know because I dont want him to feel bad or wrong or abnormal.
But I do this to help him. I open myself up and I come with my most prized possession and I let you make marks on your papers about all of the things he does that are "wrong". And I only do it because he means more to me than anything. Because there is no door I will not break down in order to help him. No paperwork too long, no therapist too far to reach. I will do anything to help this amazing, smart, sweet, honest, caring, silly boy that I have been blessed with.
I am his Mother and these things are my job. and I am unwilling to fail at this job or to fail this little boy. His future will be better because of how hard we will work together.
But know this, there is no grading system on your paper tomorrow that will show you who he really is. Nothing to register how sweet he is or how much he loves. You may think you know him because of the 35 pages of reports you will have on him but you will never have a clue. Don't get me wrong, I am grateful for you. I thank my Father in Heaven that you are there for us. I just hate your tests and I hate your questions and I hate, I hate your jotting pen. Because I hate how this disorder has taken parts of Luke from me. But Im going to get him back. All of him.
So here we go.... again.
8 comments:
Jill this post made me cry. What a blessing it is for Luke that he was sent to you to be his Mom. If every kids parents would fight for them the way that you are....there would be alot less problems in this world. He was sent to you because our father in Heaven KNEW you would fight for him. Bless you.
Yes, you made me cry. I hope that all goes well today. Luke is such a great kid - I am so glad that he and Lance are friends. I'll be thinking about you.
Okay, so I didn't cry, but I did feel an renewed drive to work hard for Samantha! You're very inspiring (and a good writer, too).
I hate how this is such a long process and that I'm constantly playing the waiting game for Samantha's sake. Her OT just suddenly moved to Alaska and so we're on another list to get a new OT.
It gets frustrating when I just want to have the help she needs right now in place, but my schedule doesn't match up with someone else's. At least I know she'll get there and I can do things with her until then.
Thanks for your wonderful uplifting words!
I love my perfect little Lukie and miss him terribly.
wow, tears came to my eyes too! What a great perspective to have, and what a fantastic mother you are!
YOu are such a strong, responsible and loving mother. So many would just deny their child even needed any of this, yet you go through this all knowing it will help the son you love.
You are such a good Mother Jill. This made me cry. Just as you feel lucky to have Luke, Luke is so so lucky to have you as his amazing mother.
You don't need to post this on your commoents, but I totally understand where you are coming from. We had some testing done on Taylor, and even though I knew there was developmental delay happening, reading the words "mildly mentally retarded" was heart breaking and crushing. I took the report with a grain of salt because the Dr. does not know my son, he does not know all he has already over come, he does not know how determinded his dad and I are at making his life as "normal" as possible. I know that there will always probably be some sort of problem, I am not denying that but I also know he isn't a fortune teller, and really can't tell me if or when he will be able to make it on his own.
You are a fantastic mother, Luke is very lucky to have you!
Love ya!
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