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Part 2: Navigating Insurance and Figuring How to Pay for Therapy

I was supposed to go to class after Ingrid had her assessment.  I was too overwhelmed to even think about sitting in a room with other woman and having to listen to an instructor teach.  Nothing against any of them but I was in this state of really wanting to be alone.  I was having a range of emotions flowing through me at the same time that it felt as if my own skin was crawling.

When I got home I just sat with Ingrid for a little bit.  I started at her wondering what her future would hold.  I knew that my job as a parent was to do everything; anything to give her the best opportunity in life.  I decided that for my own sanity I needed to just take a week off from the worrying and focus on my family and making sure we were all still doing what we normally do before I started to figure things out.

For that week I put the packet that I received from WEAP off to the side.  Instead, I made sure to play with Ingrid and have the two of us just experience each moment while we were in it together with no worries.  It was beautiful.  When Ingrid would get upset or do something unusual I would find myself thinking, “is this normal?  Is this what a typical two and a half year old does?  Or is this the Autism?”  I would find myself obsessing over things like this.  As if Ingrid knew, she would come up and give me a kiss or a huge hug or laugh one of her best belly laughs to snap me out of the obsession.  It felt good.  It felt right.  It felt normal.

After the week passed I decided to get working on all the paperwork and calling my insurance.  I filled everything out and returned it to its rightful office.  Next, I called my insurance company.   Made sure to call later in the day when there weren’t so many people in the office.  My immediate co-workers knew for the most part what I was going through but I was nervous that I would break down if I ran into some issues about getting my questions answered or being told news that I did not want to hear. 

I called the number on the back of the card.  I get the really annoying automated woman asking what I am calling about.  So I state my business.  This machine tells me they did not hear me so I state it again.  It goes through more questions with me and most of them I have to repeat my answers.  I am growing rather weary from this.  I finally get transferred to a live human.  I explain the reason for my call, I give them my insurance card ID number, verify both mine and my daughters date of birth and our home address.  I get told they can not help me and I get transferred to another department.

I speak to the next person.  I go through the whole thing again reason for call, my date of birth, Ingrid’s date of birth, mailing address, insurance ID number and wouldn’t you know it; I have to be transferred again.  I take a deep breath, say OK, no more questions and get transferred to another area.

Finally aftyer a few misnutes of being on hold I get my third person.  She is really sweet sounded.  I go through it all again; reason for call, date of births for Ingrid and I, our address and the insurance ID number.  The woman confirms I am in the right area.  I celebrate in my head this small victory.  I explain to her about my daughter being just diagnosed with Autism Spectrum Disorder and the recommended therepy is Applied Behavioral Anylasis or ABA.  They look through my policy and state that my policy does not cover this. 

Luckily for me WEAP gave me a sheet of questions to ask.  So I start to go through them:

                Is my policy following the Wisconsin Autism mandate?

                Is in-home ABA therapy covered on my policy?

                Is this policy based in Wisconsin?

Is this a self funded policy or an administrative serviced only policy?

I am told that my policy is self funded there for they do not have to follow the Wisconsin Autism mandate and they are only required to cover what ever the federal guidelines are.  There for my policy does not cover the ABA therapy.  So I ask what they Do coverage.  I am told that they cover individual and group psychotherapy.  I explained that is of no use since my child is two and a half and non verbal.  Talk therapy is not really an option.  So I ask one last question:

Is the lack of coverage based on what my employer chooses to cover or what my insurance company offers?  I am told that the option to cover ABA therapy is left up to the employer.

Thanks for the information I say and I hang up.  I can feel the tears filling my eyes.  I wipe them away and take a deep breath.  I convince myself this woman has no clue what she is talking about and I will call back in a few days and speak to someone else.

I did this.  I got the same response. 

No my sadness was turning into anger and rage!

The Journey to the Diagnosis

I know no one ever thinks their child is anything less then perfect.  I have always felt that about my child Ingrid.  When she was born, with all that hair, and her soft skin, and feet that were the length of ski’s she was perfect. 

 As she got older, and the hair got longer, she was still perfect.  It took her a little longer to roll over and sit up but it didn’t matter.  She smiled and laughed, and cried and pooped and she was still perfect.

 She turned one and was still perfect.  She wasn’t walking yet and she just learned how to pull her self up but her chubby little legs, wobbling under her was still perfect too me. 

 Right around one and a half she really started to walk.  A late starter I suppose but she picked it up real quick.  She didn’t say anything but she remembered some signs her daddy and I would use on occasion.  We decided to use more signing with her.  She really picked that up.  She didn’t say “momma” but she said “dada” and “cat” really well.  I believe she might have been saying “puppy” too. 

 I started to notice how she would play with her hair pretties as I was brushing her hair.  She would take all the similar ones and line them up in a row.  I started to notice her doing this with some of her tows as well.  For me, it made perfect sense.  I was like that.  I have two colors of plates and when I put them away they MUST be alternate colors.  I have an obsession with odd number so in my art work or how I decorate my home things are in odd numbers.  I actually do not like symmetry but I like to find patterns and use that.  So my kid arranging things a certain way proves to me she is from my stock. 

 It was just before her second birthday that the word AUTISM was uttered.  My older sister said she had done some research and some of the behaviors that Ingrid does that I think are normal are signs of Autism.  I freaked out.  It was a month before her 2 year old check up but I called and got her in to see the doctor right away. 

The doctor didn’t think much of it but did state the delay in speaking was a concern so we were set up with speech therapy.  It was about six months later that our doctor called to have us come back in to discuss the speech therapy.  I thought things were going good.  However, the speech therapist had contacted our doctor to state that Ingrid showed moderate signs of Autism.  My heart broke.

 Next thing I knew we were setting up to have her assessed.  It would be 6 weeks before we could get her in.  I found myself analyzing everything she did.  I as researching everything I could.  Days I would think to myself that she was Autistic, other days I thought it was impossible.  I struggled with feeling inadequate as a parent.  How could I not see there was an issue sooner?  Through the school I attend I sought out help to get myself tested for learning disabilities.  I went through a month of tests and as I write this still await my results. 

 I started to think that my own mental health issues caused this in my beautiful child.  Is my child so much like me that she took on my mental health issues as well?

 The night before the assessment I just could not stop thinking about how I somehow made her predestined to this.  I sat in her room and rocked with her like I do every night but tonight I was crying.  I was crying because I did not know what to expect.  I feared not being able to give her the best therapy to give her the best chance of success in life.   

 Assessment day came and after tons of questions and hours of observations it was determined that my child was PDD-NOS (Pervasive Developmental Delay Not Otherwise Specified).  It was explained that she had behaviors that are similar to classic autism and Aspergers but does not have enough behaviors to classify her as either one or the other.       

 I was relieved to know for sure and that there was therapy to help her.  When we left, I had a very calming, relaxed, positive outlook for her future and ours as a family.  We were given a packet of items and what our next steps were and even though the packet was overwhelming I still felt great about everything.

Failed Co-Sleeping

It seems that every time I turn on the news or go online to local news sites there is a story about the death of a baby contributed to co-sleeping.  The response for the past several years has been public service announcements and billboards trying to discourage the act all together.  Unfortunately it seems that these PSA’s are not rectifying the situation much.

Just a month or two ago Milwaukee unveiled their newest campaign against co-sleeping.  There are two different AD’s and each shows a baby sleeping with a large knife.  They are on fluffy blankets and surrounded by big fluffy pillows.  Across the top it reads, “Your baby sleeping with you can be just as dangerous.”

At the end of 2009 there was another campaign that showed an adult bed.  There are some pillows and blankets on the bed and the head board resembles that of a tombstone.  In the tombstone it read, “For too many babies last year, this was their final resting place.” 

As I was doing some research for this post I came across another campaign that showed either a mattress or couch on the side of the road.  On it is an orange silhouette of a child.  Each one has its one separate statement.  One says, “It’s time to wake up to the dangers of sleeping with a baby here and babies who sleep here don’t always wake here.”

I understand that messages that the city wants to convey, however it appears that they are falling on deaf ears.  It seems like I am hearing more and more about the death of babies due to co-sleeping and the issue is not getting better but worse. 

I strongly feel that making co-sleeping the enemy alienates a lot of people from feeling comfortable about getting the facts on how to do so properly.  Many people from different cultures have co-slept and done so in a safe way.  When I was having issues with my daughter and getting very little sleep our family doctor stated that even thought she can not advocate for co-sleeping she said there are times when you just have to try everything that works for you.  She advised us of what not to do, (drinking, medication, etc) and took keep all pillows, fluffy blankets off the bed. 

My husband and I tried it and hated it.  We were too nervous to fall sleep.  We just dealt with things as best we could.  Co-sleeping did not work for us, but that does not mean its some horrible enemy that the city is making it out to be.

I think the better alternative, that might actually HELP save babies is that the city needs to offer literature and education on safe co-sleeping.  They can stress all they want that sleeping in a crib or bassinet is the safest place for a baby but if a person decides to co-sleep then here are the tools to do it in the safest way possible.

The city of Milwaukee needs to wake up and stop ignoring the other side of the story when it comes to co-sleeping.  They need to stop playing the fear game because this tactic has proven not to work.  Instead, the city should be teaming up with co-sleeping advocates to help come up with an alternative campaign that addresses that co-sleeping can be dangerous but can also be done safely and the best thing a person can do is educate themselves on which option is best for them and their baby.

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