Autism awareness and education. Married to my best friend, mommy of two wild monkeys and riding the roller coaster of life and love.
Tuesday, December 18, 2012
Monday, December 17, 2012
Day of Silence
I know all of you share my sadness over what happened yesterday. As a mother - I can't FATHOM how those parents must feel. I hope you will all be praying for the people of CT. They need our prayers. My heart goes out to all of those people who will be forever changed by this tragic event. May God bless and keep your families close in his arms. I'm praying for all of you.
On Tuesday, December 18th, there will be a blogger day of silence. We will post the button and that's it. Please try to not post anything else that day if possible.
We are also raising money that will go to an organization in the memory of this tragedy. The organization is called The Newtown Family Youth and Family Services. Here is the official description of the support service we are donating to:
"Newtown Youth and Family Services, Inc. is a licensed, non-profit, mental health clinic and youth services bureau dedicated to helping children and families achieve their highest potential. NYFS provides programs, services, activities, counseling, support groups and education throughout the Greater Newtown area.
ANY DONATIONS MADE TO NEWTOWN YOUTH AND FAMILY SERVICES WILL BE DONATED DIRECTLY TO THOSE EFFECTED BY THE SANDY HOOK ELEMENTARY SCHOOL SHOOTING."
Please visit THIS PAGE to make your donation.
We can't imagine how they must be feeling, especially this close to the holidays. We would love for you to spread the word on your own blog, Facebook, Twitter, etc. Let's make a difference and use blogging in a positive way. Thank you in advance for participating.
Love,
The Blog World
p.s. If you would like to, copy-paste and repost any part of this, please do. Share on.
Friday, December 14, 2012
Filling in "THE" Blank
What's that expression? Close, but no cigar. Yep.... that's about all I got at the moment. (excuse the poor but deliberate English there) Call it what you want, I call it CRAP. Serious CRAP. Sooooo...... of course after I posted my frustrations about this whole "blank" that was left blank, I finally got someone to answer my call later that same day. Go figure. (more on the "blank" here)
I guess it should come as no surprise that every time I take two steps forward, consequently I take two steps back. Or at least it feels that way. Just as I think we are making "progress" with all of Jackson's testing, my phone call for answers didn't quite fill in the "blank" like I thought it would.
Let's set the scene...me on my cell phone, pen and paper in hand ready to vigorously write every word of the conversation (you should see my shorthand from these medical calls, the dog could write neater LOL) and then we have the nice lady on the other end of the line at the therapy office. Pretty simple, right? I begin to ask her about the ever so dark blank line from our OT evaluation and why there was no medical diagnosis on the line and her response to me was, "Oh, a doctor has to do the official diagnosis, so our screening for his occupational therapy is limited without a medical diagnosis" (Cue my interior monologue: "Excuse me what!?! I thought that's what you all were doing? She can't be serious? Is this for real?") My real response came out as "That's what I thought you all were doing?" She then went on to tell me that they cannot medically diagnose for Sensory Processing Disorder or anything else OT related, they can only do an evaluation at their office. (Ummmm, NOW'S a FINE TIME TO TELL ME THAT!) So I calmly (yes calmly) asked her what I needed to do about getting to a doctor that can give me those results so we can continue on the path of getting Jackson the testing and things he needs to succeed. We went back and forth for almost 30 minutes and to make a long story short, I needed another referral from our pediatrician for psychology testing and he needs to see a neurologist for the sensory testing. We are also planning to meet with the school about Jackson going into first grade next year, etc. which I explained to her as well. We were coming to the end of our conversation and her advice to me what that I just needed to be calm about everything but that she also maybe should have pushed a little harder for the other testing things for Jackson and that she wanted me to just enjoy my Christmas with my son blah blah blah (yep I was tuning her out by then) Hmmmm, okayyyy. And I'm suppose to still be calm? I could feel the steam starting to come out of my ears at that point.
I sat there in silence for a minute. How would you respond if someone said "I should have pushed harder for your child"? I simply said I would be in touch with our pediatrician for the other referral and we hung up, although I was ready to BLOW up! For a minute, ok maybe a few hours, I felt like I was failing at all of this for my sweet Jackson. In my mind I was falling just short of success and getting nothing for my efforts. How could I have missed these important things. Why didn't anyone tell me we needed additional doctors and referrals? I guess I shouldn't have been so surprised. Things could only go "according to plan" for so long on this long journey. So, I called my Mom, threw myself a short pity party and put the whole conversation to rest. I just couldn't think about it anymore. Talk about having the scrooge mentality, phew.
Fast forward, I called our pediatrician's office to send my "cry" for help because I wasn't sure what else to do. Lisa at the office, (an angel in my book) listened to every word of whining and complaining about my phone call. She told me not to worry and that she would call the doctor that we needed to see and demand that we get some answers so we can get back on track. Keep in mind I have been trying to get in touch with this neurology clinic for a while to see a great psychologist, or so I have been told that he is. Within about three hours she called me back. Whoo!
Now to fill in that blank. Lisa said, "You're in." THAT was the answer that was missing from the blank. We are in. Finally, we are in. HOLY...... And we are in with a good one, maybe the best? What a sigh of relief. OMG what does that mean? Well, so the neurologist that we are scheduled to see will evaluate Jackson to diagnose or rule out Sensory Processing Disorder and he will also be doing Jackson's Autism and ADHD testing to diagnose or rule those things out as well. He specializes in pediatric ADHD and all forms of Autism. (We do have a psych eval for Autism with EDFTC but not until at least February due to their physician being out on maternity leave) But Lisa's magic has fast forwarded us to another doctor for January 10, 2013.
That's 28 days from now. Days that will go by fast, but seem like eternity. I called John to tell him and I was so overcome with emotions. I wanted to smile, cry, jump up and down, not to mention I feeling drained all at the same time. (that's a one woman circus of emotion huh? lol) After years of wondering and searching, we are finally getting "our turn". Suddenly, my world stopped turning for just a moment. Nothing mattered at that moment except knowing my itty bitty monkey is going to get his turn.
I could HUG and KISS you Lisa! Thank you will never express my gratitude to you. As we approach Christmas, the season of hope and my mind goes a mile a second...
Some days are a rock, some are a stone. For now, I won't look forward, nor behind us.
I am looking for hope and I have fear. What's on the other side of January 10th I do not know.
I cannot predict and don't want to think, I just want to give one final sigh of relief.
I want to succeed as a Mom for my child, this world is beyond wild.
And I am not scared of what's to come, though the path is not clear.
So for now, the blank has been filled and my time is served best... right now, right here.
Do not be afraid. I bring you good news of great joy that will be for all people. -Luke 2:10
~EM
Labels:
Autism,
change,
developmental delays,
doctors,
EDFTC,
family,
Jackson's Journey,
kids,
life,
love,
Memphis,
mommy,
physical delays,
sensory processing disorder,
strength,
success
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