World Autism Awareness Day

I've been very reflective today.  Not that I don't think about autism all the time.......Usually, when I think about autism, I'm bitter....and mad.  Today I am grateful.......

Not grateful for the autism......I'm not crazy....but grateful for the the help and support that the boys receive.  We wouldn't be where we are today without all that help.  We are lucky that we live in a city that has resources to help the boys.

 I feel sorry for the families who live in small towns and don't have good resources.  It must be so frustrating for those moms that know what help their child needs, but can't find it within a 30 mile radius of their house.  Maybe Autism Speaks needs to create an outreach program to help these families.

I am grateful that Nate and Noah attend a school for special kids.  It's such an amazing place!  I feel sorry for the kids whose parents insist on keeping in the mainstream school when there are other avenues to consider.  Regular high school or middle school is not always the best placement for a child who will not be able to live independently.  I do not understand why some parents think that memorizing the President's of the United States is a better use of their child's time than learning life skills.  I know it's more expensive to educate a child in come special schools, but what happened to doing what's best for kids?  What will happen to that child when they turn 18?  I'm afraid the parents will not have done what is best for their child's quality of life.

I hope that soon the Autism Bill becomes a federal law.  It's a shame that families in Missouri who have a federal health insurance policy and not a Missouri policy do not get the benefits.  I think it should be available to all families in the United States, regardless of their insurance carrier.

We are so lucky to have Team Hill!  We have 11 people who care about the boys and work very hard to help them reach their goals.  Yes, the autism sucks, but the people who have helped us throughout the years have been amazing.  We are lucky to have them.  Let's hope that all families affected by autism have such a team.

Another hoop

A few weeks ago, our DMH case manager decided that to put Nate on the waiting list for the Lopez Waiver (the same one Noah has).  This decision was made due to Nate's increased aggression and his hours being cut by the insurance company (that's a whole other issue).

In order to apply for the Lopez Waiver, I must apply for Medicaid (again) and be denied (again).  Has anyone seen the paperwork??  Why can't they just pull up our telephone number and see that we were already denied once so we sure will be denied again??  This is just ridiculous!  I am so tired of filling out paperwork.

I don't understand why people make things so difficult for some of us who already deal with difficult every day.  How about making things easier?  Just come to the house, watch one of Nate's meltdowns, and make the decision.  Someone must think that I sit around on my ass all day and eat chocolates.  I surly have a lot of free time to fill out a four page application for something that I will be denied.  

I am filling out the paperwork......ugh......

By the way, hula hoops are the only type of hoop I want to deal with.

Nate is 15

Nate is 15.  We have had his diagnosis for 13 years. 13 years ago I started to mourn the loss of the child I would never have. 

Nate should have his driver's permit. 
Nate has not had a first kiss.
Nate has never had a sleepover.
Nate has never played a team sport.
Nate has never gone to the mall with his friends.
Nate has never had his heart broken.
Nate has never ridden a bike.

I am still mourning. I am still angry. I am still jealous of all my friends who have typical children. 

PJHS

A couple of weeks ago, I visited my previous place of employment.  It was so nice to visit with the friends that I haven't seen in a very long time!

As I was driving home, I realized that these people helped me get through getting Nate's diagnosis and the first 15 months of therapy.  They were so patient as I cried and wondered how we would get through this.  They offered many hugs and words of encouragement.  They listened while I described every therapy and cheered for every bit of progress, no matter how small.  

It was a difficult decision to leave PJHS.  However, working closer to home was best for my kids.  I think of these friends often and hope they know how grateful I am for their support and friendship.  I don't think I would have survived that first year without them.

2 Year Anniversary......

Today marks the 2nd anniversary of having Behavior Intervention Services in the house.  The time has gone by so quickly!  What a difference two years makes!  The boys are making progress every day.  The new people on the team can't believe stories from 2 years ago.

Nate's most noticeable progress is in the area of independence.  He now makes his bed, makes a microwavable breakfast, gets dressed, brushes his teeth, washes his face, and loads/unloads the dishwasher independently.  Two years ago, he could not do any of these things.  He is almost showering independently, he still needs some verbal prompts to get moving....otherwise he just stands under the warm water.  We are still working on his speed.  Nate moves at his own speed....never feels the need to hurry for anything.  He will now sit through a movie at the theater.  That could not happen before BIS.  They are still working on Nate paying for items and improving his skills in the community.  Don't get me wrong, he is still so behind other kids his age, but his progress is amazing.

Noah......wow...... Two years ago, he was naked and aggressive.  He pulled me to the floor in the bathroom at Macy's (not my best moment).  He freak out whenever someone turned on the automatic hand dryer or if the automatic flusher went off.  He never kept his clothes on...at home or in public.  In order to brush his teeth, you had to lay him on my bed and straddle him and hope he didn't hurt you.  He was also eating and/or spreading feces.  He could not sit at the table for a meal.  He would take one bite and fall to the floor or run around the table.  All of these things have improved.  I don't believe it.  He is not the same child.  He listens (most of the time), he will let you brush his teeth, he sits at the table and waits for 3 minutes, he stays dressed, and he is potty trained.  This growth helps me believe that he will be able to live in an assisted facility with Nate.  

Nick's behavior in public and his people skills are improving.  He is still a little quirky, but learns better behaviors through practice. He is starting to understand how to have a conversation with another person, instead of just talking at the person.  He has 2 friends and I would like that number to grow.  He is also becoming more independent at home and out in the community.  

All of our lives have improved with the Autism Bill and Behavior Intervention Services.  Our team members have always been very nice and truly want to help the boys.  With their help, Tim and I were able to take 2 short trips alone.....what a luxury!  I don't feel so helpless or alone.  I can't wait to see where we are January 2, 2014!

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......