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......

If you win the lottery......

If you win the Powerball Lottery tonight and need an investment for all that money, I have a plan.  I have a dream for a residential facility for adults with mental disabilities.

I envision a dormitory-type facility.  The top floor would have single rooms that share a jack-and-jill bathroom.  The rooms would be large enough to house a queen size bed, a dresser and chest of drawers, small refrigerator, microwave, table with 2 chairs, love seat, recliner, and a television.  The bathroom would have a vanity, toilet, and a bathtub (which can have a bench or stability bar if necessary).  There would also be an office at the end of the hall for staff.

The next two floors could have single rooms that have their own bathrooms.  These rooms would be smaller and more expensive than the rooms with a shared bathroom.  These rooms would be large enough to hold all the other furniture as the upstairs rooms, but may only hold a double bed.  Also, to save space, the bathrooms may only have a stand up shower instead of a bathtub.

The ground floor will be the hub of activity.  It would house a commercial kitchen and dining room with several tables.  The kitchen would be professionally staffed and serve 3 meals a day.  There would be four therapy rooms; one for speech, one for OT, one for music therapy, and one for physical therapy.  We would employ full-time therapists to meet the needs of the residents.  A recreation room would house a large tv with video games, a couple of couches, tables and chairs for games, and shelves of books.  An exercise room would have various exercise equipment and an indoor trampoline.  A snack shop would be available for the residents to purchase snacks to practice their money skills.  We would have a heated pool in the back, an adult size playground, trampoline, and basketball hoops.  There would also be a physician's assistant on duty at all times.  The director would have an office along with a conference room.

The basement would house a commercial laundry room for residents and a separate laundry room for the facility.  It would also have storage facilities for the residents and the therapists.  The staff locker room would be downstairs as well.

The facility would be fully staffed 24 hours a day.  A resident can have 1-1 staff if needed.  A resident would have scheduled activities.  These could include speech therapy, OT, music therapy, working in the kitchen, doing chores in the facility, having a supported job outside of the facility, taking group or individual outings.  Each resident will have a staff member who is in charge of his/her "team" and daily schedule.

I know that the trend is moving towards special adults living in houses that are staffed 24/7.  I think this would be more beneficial because so many opportunities for socialization would be available.  There would also be so many activities to keep everyone active and making progress.

This is my dream living situation for Nate and Noah.  All I need is money, an architect, and a large plot of land.

Always thankful.....

While I am not thankful for autism, I am thankful for the arsenal that I have to fight it.

1.  The Autism Bill- requiring the insurance company to pay for in-home ABA.

2.  Behavior Intervention Services- providing the staffing for said ABA.  Team Hill is Fabulous!  They have changed my life!

3.  Action for Autism- the organization that raises money to help families pay for therapies for their children with autism.  They help me pay the co-pays and the boys' camp fees.

4.  ARC- Association for Retarded Citizens....yes, they need a new name.  They provide the weekend camp that Nate attends and Noah will also go this spring. They also ran Teens in Motion, the summer camp that Nate attended this year.

5.  The Home Health section of our health insurance-  when the OT and Speech therapists come to the house and it's billed through Home Health, there is no co-pay.  Please share this with other families!  The boys receive 50 OT visits and unlimited speech through the Home Health section of our insurance.  It makes life so much easier, we don't have to take them anywhere and we don't pay a $20 co-pay each time.

6.  Vicki-  every family should have a Vicki.  There are not enough words to explain how she helps us and not enough words to express our gratitude.

7.  The ADA Act-  when anyone takes the boys to an activity that charges admission, we pay for the boys, but their staff get in free.  This saves us a lot of money.

8.  Skyzone- kids with autism and their staff member jump free anytime.

9.  Therapy Relief- the company that provides our OT and Speech therapists.

10.  Special School District- St. Louis County pools their money to provide SSD services to all of the school districts.  This way, they can provide better services to kids.  Because of this, they have never told me that there isn't enough money to give the boys what they need.

11.  Southview School- the school for special kids that Nate and Noah attend.  Nate is starting to learn some basic office skills.  The boys can stay in school until they are 21.

12.  My family- they love the boys unconditionally and celebrate every one of their accomplishments.

13.  My friends- they don't pity me...they listen to me cry when I need to without judgement and take me out when I need to get away.

People in my house

I am often asked how can I handle always having people in my house. Saturday is the only day that staff is not scheduled to be at the house. On any other day, there can be anywhere from 1 to 5 extra people in the house.  My neighbors must think that we throw a lot of parties. 

Yes, it gets crowded. Yes, it gets chaotic. Privacy is a thing of the past.  However, the outcome far outweighs the inconvenience.   

These people have changed our lives.  Nate, Nick, and Noah will live much more productive lives thanks to these people. Because of this, I don't complain about the people in my house. We welcome them into our family.  We happily set another place at the dinner table knowing that the meal I feed them and their salary doesn't begin to equal their worth.  

Christmas is coming......

The holidays are upon us.....it's a difficult time for us.  The boys' schedules are disrupted and there and just so many more people.

Another difficult area for us is gifts.  People always want to know what to get the boys for Christmas.  For so many years, a lot of money was wasted buying the boys gifts that we thought they should want.  Everyone wants to buy the toy that brings squeals of excitement and hours of enjoyment.  Unfortunately, that doesn't happen with Nate and Noah.  We wasted so much energy trying to apologize to everyone and come up with excuses as to why they weren't excited about the gift and yes, they would spend hours playing with it.  We decided that it was time to end the facade.

We realized that the boys enjoy experiences more than toys.  They love videos and their IPads.  We now ask for ITunes cards and gift cards to their favorite restaurants.  This makes everyone happy.  The boys don't have the pressure of opening a toy that they won't play with and everyone knows that their money was well spent.  Since everyone still wants the boys to open a gift, they wrap boxes of Pop Tarts and other favorite snacks.  This also guarantees happy faces when the present is opened.  It's also a relief now that my family understands that the boys need to open presents in shifts or they just let me open them instead.

So, I will now get on my soap box.  If you need to buy a gift for a child with autism, I am going to give some suggestions.

1.  gift cards to restaurants
2.  pool together money to buy a therapy item: such as a trampoline, swing, adult tricycle, ipod (there are so many great apps for kids with autism that ITunes cards are always a good idea)
3.  pool together money to join an indoor or outdoor pool or gymnastics lessons
4. find favorite videos and or video games

I just purchased a family membership to an indoor wave pool.  Nate and Noah will enjoy this much more than the X-Box that we purchased last year.......another lesson learned.