Whitney Update- What Ever Happened with the Test Results?

So much has happened since my last post. We had a 2 week visit from Tim's parents, LOTS of evaluations for Whitney, home renovations, and Owen and Lily's birthdays... so I didn't have much time to post.

The most frequently asked question that I have received about Whitney is,
"What became of  her genetic testsing?"

I wish I knew.

About 3 weeks ago I called to find out those exact sentiments. I discovered that the Microray (the genetic and chromosomal test) was never run. Apparently when the lab discovered that our insurance company did not cover the $1300.00 test, they decided not to run it (instead of contacting us to see if we wanted to pay for it out of pocket). Hearing this news was a bitter pill for me to swallow. However, it prompted me to immediately set up an appointment with a geneticist in Detroit, which we will be taking Whitney to on June 13th. The genetic doctor will hopefully provide us greater clarity regarding Whitney and any concerns that are to be had regarding a genetic or chromosomal abnormality. I am guessing we will go through with the Microray regardless of how it gets paid for.

After an emotionally arduous month of evaluations, Whitney has been diagnosed by the Oakland County schools as having an ECDD, an Early Childhood Developmental Delay. In short, she has multiple delays that are averaging on a developmental level that is equivalent to (less than or equal to) half her chronological age in multiple areas. It was frustrating at times to see her perform so poorly on certain tests, when I knew she knew what they were asking of her. However, by the grace of God I do not feel hedged in by this label. It has actually proven to open some unexpected doors of opportunity for her. Whitney will be attending the Oakland County Special Ed preschool in the fall. She will go to an academically based preschool 4 days a week for almost 3 hours a day. There she will receive all of the ancillary support she needs on a regular basis (speech and physical therapy). This was a dramatic turn of events for me on so many levels. Preschool, 3 hours, 4 days, Special Ed...this required a cry-fest on the phone with Kristen one afternoon. However, the very next day I took Whitney to Baldwin Elementary for our very 1st Mom and Tots weekly class. She LOVED it and did very well, proving to me her remarkable social skills and ability to rise to the occasion. She loves school and I now have no doubts that her attending this program is the very best path for her (and the rest of the homeschool kids). I will be the first to admit it: there is NO WAY I could do it all, at home, by myself. My heart still breaks a little at the thought of her being away from me for so long each day...but it is time for me to allow her to grow in they ways she needs to.

I HEART SCHOOL

On another positive note, Whitney scored in her exact age range for her emotional and social behaviors. She loves people. Win win!

Overall Whitney has made distinct progress since my last update. Her vocabulary is slowly increasing, and her gross motor skills are improving as well. There are days when I feel very confident that she will overcome all of these obstacles, and other days where I have to 'fight' for my peace. Today I have realized something quite profound. My connection with my 'non'-verbal child has grown strong in the context of our physical relationship. When I take a bath and she lays on me and I sing to her, I feel our hearts united. When we snuggle together, read books, or play, I feel connected to her. When we are lying down and I feel her arm's grasp around my neck tighten as I try and sit up, I feel wanted by her. However, this also explains why my heart often hurts and feels like I am 'missing' her when Tim is around all weekend and she dismisses me in favor of him, or when she is not that 'into' being still and cuddling because she is a busy almost 3-year old. Whitney is teaching me about love and its dance of patience. Oh how my own mother must chuckle at the prospect of me having to learn patience. I know. I know.

Patience and contemplation have been desirable fruits on this journey with my baby bird. When I see children with Downs Syndrome, or other obvious specialties, I can feel a soft part of my heart reserved for only these children and their parents exhale love. I feel forcibly protective of these children and families against judgments, impatience, criticism and ignorance. Jokes about the "short-bus",  sarcastic use of the term 'special', and comic mocking of slow speech are among the things I have no tolerance for. I am learning to celebrate the fight it takes for people with disabilities to accomplish our taken-for-granted normalities. I am learning to literally sit next to and see the GIFT that each child is regardless of how the packaging works.  I hope you will join me, in your own spheres of influence, in being a source of encouragement for those in or around your life with specialties. Look into their eyes and see. Then smile at their Moms.

I love my Whitty Woo Baby Bird, and her cuteness melts us everyday. Here are some pictures from the last month.

Boom and Grow forever.

Prettiest baby bird in the world



Traverse City



Sleeping Bear Dunes



Grammpa gettin' some Whitty Sugar

 



1st Day in shorts



The Farm field trip with Dada



Eyes



Nose...poor animals had to endure all her facial feature knowledge

I love you
A bushel and a peck
A bushel and a peck
And a hug around the neck
A hug around the neck
A bushel and a peep
A bushel and a peep
And that just can't be beat

Much love and respect to the awesome Mom's who have walked similar roads (or are walking):
Christa P., Desiree B (whom I have yet to meet), Marci S., Wendy C.,  Jill Y., Liz K., Rachel P.,