Where Do the Words Go?

One of the scariest things for me concerning Sadie is that I have no idea where Sadie's words go?  Last week she would say "barn" so clearly to request a chance to play "Peek a Boo Barn" on the iPhone....now she does not.  Last week we had "bye" so clearly, now it is a faint whisper.  I feel like as I put words in, some fall out the other end.  I wish I knew how to make the words stick.

Confusing results

 It's been a hard week of two for me in regards to Sadie's progress/therapies/ and challenges.  We got the results of her bloodwork last week.  We learned that her b12 and her carnitine levels were both  low.  I have heard about low b12 levels mimicking developmental delays but carnitine was a new word for me.  We were sent back for further testing. Of course this made me so nervous.  What were they suspicious of?  Carnitine affects many things.  It can give you low tone for sure.  I often confuse low tone and strength.  I have learned that tone is brain based and strength is muscular. Sadie is now on a supplement for carnitine but not yet B12.  Doctor Gordan thought we should do it with food.  All this info this week has be shaken up.  Why more testing?  Why not give her B12 if low B12 could cause a developmental delay?  When will I get the results from the last tests....I wish I had all the answers:(

Full Day of Therapies

Sadie had another good day at OT.  She tried finger painting and followed Celia through her obstacle course.  ABA with Michele was good today too.  Sadie said Bye every time she was asked.  We figured out that Sadie only turns her head reliably when I call her name. At speech today, Camil admistered her 6 month Battelle screening.  I could sense improvement as she asked the questions which is good.  The big news for the day was that we got some of Sadie's bloodwork back.  Sadie has low B12 (200) and low carnitine 27 on a range of 33-89.  I am a little alarmed.  I am anxious to understand better when I meet with Dr. Gordan tomorrow.  Wish me luck.                                              

Back to OT

It was a full day even though, half of it got canceled.  Sadie, Celia and I started the morning very early to get ready to be in Celebration for Sadie's 7:30am OT appointment.  Since she has missed a few lately, it was like starting from scratch.  Sadie was not a happy camper. She did get to try a spio, which is basically a Spanx for a sensory seeking baby.  We are helping it helps with her trunk control are core strength and perhaps gives her the deep pressure she craves. Then off to preschool.  Our ABA got canceled but I was determined to make the day as productive as possible.  Instead of therapy, I visited the Roper Y and the Zion childcare center as potential environments for Sadie to work on social skills.   I also spent most of the day on the phone with Cigna trying to figure out why they won't authorize Sadie to have speech.  I found out that the speech therapist kind of sent a mixed up report between our autism doctor and our regular doctor.  It just did not work.
So now I am starting to wonder if I need a new speech therapist.  I look forward to getting this all worked out as soon as possible.  I know that Sadie needs help most of all with speech.  At this point, she does not imitate, has an inconsistent vocabulary and low receptive language. Sometimes she says "bug", sometimes "g", and sometime when there is no pressure she will say "lady".  its like its in there but trapped.  I have started wondering about verbal apraxia.  Hoping to talk to a new speech pathologist tomorrow.  Hopefully, I can do this all while Celia is at school.  The disporpotaiate amount of time going to Sadie is hard on Celia.  We are needing to find balance.

High: Sadie tacted ball, gave it to me when requested and even tried kicking it.
Low: I spent more time on the phone than with my kids(at least it felt that way).

Happy Birthday Sadie

Yesterday, little Sadie turned two.  For some reason that seems like the official end of my baby years.  A little sad but for Sadie there are many great things ahead and growing up plays a huge part in that.  In fact, that is what this blog is about....Sadie's big year!

On July 3rd of this summer, Sadie was diagnosed with autism as a result of her lack of language and her intense sensory issues. Although we have been plugging along with speech and OT since the spring... the diagnosis has changed our lives.  We do Speech, OT and now 15 hours a week of Applied Behavioral therapy, and an hour sensory class each week.  Its an intense schedule.  Its tiring and time consuming but it's also hopeful.  I have high expectations for this year and feel that Sadie might surprise us all.  For that reason, and because sometimes I need to look back and see how far we have come... I decided this was a great year for a blog.  So here we go....
Happy Birthday Sadie.  I hope you love your bathtub ball pit. We love you so much!

So today, Monday September 10th,  Sadie had a full day of therapy.  She got right to work with Tammy, one of her ABAs and worked on saying bye, imitation, walking outside without pulling and coloring on paper instead of eating crayons.  We learned M&Ms and cookies are not that valuable to Sadie,  Tangled seems to be her best reinforcer.  We also learned Sadie really loves to sit in the grass and for some strange reason.... its easier for her to walk in the grass.  Bizarre.  After 4 hours of that today, Sadie had speech too.  She loves when Camil comes.  She seemed a little quiet today in terms of talking but did do a good job stacking and knocking towers