Nothing under the tree.....

A few weeks ago, Tim and I decided that we would not waste the money and buy presents for Nate and Noah to unwrap at Christmas.  Every year, it's the same thing.....we buy presents we hope they will like and wrap them.  Then, on Christmas morning, we fight with Nate and Noah to take enough interest to open them.  We can get them to open 1 or 2, but I usually end up opening them.  When they do open a present, they do not look surprised or interested.  Then, there is no guarantee that they will play with the new toy.  Usually, they won't.

I am wrapping presents and thinking of the gifts that Nick will have to open.  He will be surprised and excited.  I am starting to feel guilty that I am not wrapping gifts for the other two boys.  I know it is silly.  I am more sad about their disinterest in Christmas than they are.  When you have a young child, everyone says "Christmas will be so much fun."  Well, it's not.  It's difficult to be excited for Christmas when two of your children don't even know it exists.  

Maybe they understand the true meaning of Christmas.  They do not get caught up in the gift giving and receiving.  They have never watched a toy commercial and turned to me and said, "I want that."  All they want is to live their lives and be happy.....and jump on the trampoline, and swim, and eat pop-tarts.  There is nothing that I can put in a box under the tree that can hold a candle to the trampoline or indoor pool.  They know that we love them and we know that they love us.  So, as I sit here typing this, I am repeating to myself, "I am not running out to Toys R Us, I am not running out to Toys R Us."

Lopez Waiver....

So, a few months ago, I received a letter from the state telling me that Noah had been granted the Lopez Waiver.  Yeah!!  I was so excited and relieved!  It was often referred to as the "Golden Ticket."

However, my joy was very short-lived.  Before we could access the waiver, we had to submit a plan and it had to be approved.......

Noah's case manager told us we had to access HCY services (nursing).  This didn't make any sense to me.  Noah does not have any medical issues....he's not tube fed or have any mobility issues.  Noah's issues are all behavioral.  So the back and forth began.....

A couple of weeks ago, I had discovered that some other families had accessed their waiver without using the HCY services.  Now, I was just mad.  Why them and not us?  In one of my many emails with my case manager, I suggested that the members of the committee that grant approval come out to the house and spend some time with Noah themselves.  Surprisingly, no one took me up on that offer.

I even went so far as to have the woman who gives the approval for nursing come out to the house to see Noah.  She was appalled by his behaviors and did not have the good manners to hide it.  She finally just told me, "It's free babysitting, you should just use it."  Seriously???? I want more that that for my child.

Emails continued to go back and forth for weeks.  On Friday, it looked like we were going to have to try the nursing and chart any set backs he was having and appeal in a few months. I received an email from a man on the committee that grants approval.  I decided to call him myself.  I explained our situation to him and stressed how expensive all the co-pays were and that autism could eventually bankrupt us.  He actually listened and said, "You don't want HCY, you want HCY med-behavior."  I didn't know that there was such a thing.  My case manager had never mentioned this to me.  He told me he would talk to my case manager about this and get back to me today.

This afternoon, he sent me an email telling me that Noah's plan had been rewritten and he would recommend it for approval.  I called him back asking for a start date of 12/12 and not 1/1.  We had waited for this long enough.  He emailed me back a few minutes later letting me know that Noah's waiver plan could begin 12/12.

I did it!  I feel like I fought the system and won!

Noah will now be staffed form 8am to 8pm on Saturday and Sunday, 6:30am - 8:30 am and 4:00 pm - 7:30 pm on Thursdays with no co-pays.  I will also have extra hours to staff him during holidays and summer break without co-pays.  This will help alleviate the financial strain of all the co-pays.

Finally....someone listened to me......