Today My Heart Broke for My Baby Girl...and Therapy Anger Rant

Today I found I faced an emotional place that I don't go very often.  Jordan had a rough morning.  I'm not sure if it has to do with the time change this past weekend or if it was just a rough day.  She was pretty much in a state of constant whining, crying, fussing and there was nothing I could do to help her.

I put her in her chair this morning for her feeding and she picked out her video (as usual) and I put it in and went into the other room to do devotions with Conner.  Within minutes she was whining and fussing and crying and yet said she didn't want a different movie and didn't want to get down.  I left her there and finished with him just to hear her continue to whine.

After she was done eating, we went downstairs for school and she seemed to go back and forth between playing nicely and crying.  Eventually, I had her in her swing doing her listening therapy so Conner could focus.  Finally, we moved upstairs for her feeding and Conner and I read a story in the bedroom.  By the time her feeding was done, I was hoping for a short playtime before lunch.

However, for some reason, Jordan started crying.  I tried to hold her, hug her, talk to her, play with her, read to her...but nothing helped.  I finally sat down with her and asked her "what is wrong?"  She just cried harder...and my heart broke.

See, here's the thing, I have a 3 1/2 year old daughter who understands and comprehends like any other 3 1/2 year old child...but she can only communicate on the level of about a 15 month old.  Can you imagine?!?!?!  What if you understood everything that was being said and asked of you, yet you were unable to put your thoughts into words to tell the world what you wanted or needed.  I know that this morning, Jordan knew what she wanted, however, she was so limited by her disability that it broke her heart...and mine.

I know I haven't posted much about her therapy recently, but we are facing a difficult dilemma.  Last spring, we thought Jordan would be in the Early Childhood Special Education classroom for Grandville, but the teacher was not comfortable with her in the class (and neither were we) due to the fact that she put EVERYTHING in her mouth.  We decided on itinerant speech 2 times a week for a 1/2 hour - it's basically outpatient therapy with the school speech path.  We are working with the same one who worked with Conner only 2 years ago with tremendous success, so we anticipated a great experience.  However, this is far from our current reality.

This summer we received therapy at an amazing private center.  The Center for Childhood Development is located in Jenison (only 5 minutes from our house!) and provided me with an opportunity to see how Jordan should be treated - as a whole being.  Instead of separating all types of therapy, she received physical, occupational, speech and sensory therapy all together and LOVED it!!!!   Jordan made AMAZING progress and began using new words and sounds.  We even heard her start to babble during imaginary play!!  It was so reassuring to see that Jordan could make such progress in such a positive environment.

There was only one problem...cost.  We paid, on average, $110 per week for Jordan's therapy.  That doesn't include evaluations, special therapy sessions, and the headphones we purchased for listening therapy.  Well, I submitted the paperwork to our insurance in the beginning of August to see if they would cover any of her therapy...and I am still fighting them!!  Last week, I received a request to show a medical diagnosis, any previous treatment received, and the reason for referral for therapy.  CAN YOU BELIEVE THIS?!?!?!?!?  After 3 years of doctors appointments, evaluations, tests, labs, and therapy, they want to know why????

Unfortunately, this is putting a delay on treating Jordan in the way she deserves to be treated.  We are keeping her in the school therapy, although she is having major temper tantrums at every session because she doesn't want to do what they are making her do!  Their recommendation is to put her in the classroom so that she will do what the other kids do!  Seriously?!?!  My daughter has made incredible progress in the past 3 years in all areas except speech and swallowing because of her strong will and determination...and now they want to her to follow what others do?!?!  They have offered to drop her to only 2 days a week, put her in the other school (since one teacher rejected her), have her in a smaller class size, still meet with the therapist one-on-one for both of those days...everything.  However, I just don't think their approach works for my little girl.

All I want is for our insurance to cover 80% of private therapy so I can help my daughter learn to speak in a non-threatening, positive environment.  Is that too much to ask?!?!?!?

Please pray that Derrick and I can receive wisdom on the best direction for Jordan.   I love my baby girl with all my heart and it breaks when I can't give her what she needs.

Seriously Too Busy to Keep Up!!!

Okay, so I am really depressed when I look and realize it has been almost 5 months since I have updated this blog!!!  I wish I had some grand excuse...but I don't.  I have had an amazing summer with my kids!!  Lots of backyard and pool time and trips to our CSA farm (more about that later.)  I feel as though I live in a time warp!!  This fall, I started homeschooling Conner and that has, again, increased my workload as a mom...but I love it and wouldn't change it for the world!!!

I have so much to share on Jordan's progress, but unfortunately, I am going to have to do that later.  I am actually just updating to commit to myself that I MUST make this a priority!!!  I hope to update 1-2 times a month...I know, pretty lame for a blog.  It is however, more to keep myself documented on her progress as I have no baby book for her and use this as my guide...remember, she's my 3rd and just doesn't get the stuff that comes along with being born early in the birth order!

So, if anyone reads this, please remind me to post something soon!!!  My facebook page is the most likely place for me to read it!!  Keep on me...so I don't slack again!!!!!