Looking at Legislation - Arizona

My Thoughts:

So this Insurance Reform is good, but not nearly as good as Massachusetts.  This one has limits, limits on the amount paid and age - did you see it only pays for individuals under the age of 16.  Wow what do you do after you tun 16. hmmmm.  Then also if you pay for your own healthcare or you work for an organization that is less then 50 people - guess what you don't get the coverage.  Hmmm I wonder how many people that effects!!!!!!  Good but not that good!  But at least its something.  


So here is Arizona's view on the Autism Insurance Reform - Re post from Autism Votes website.

Arizona's Autism Insurance Reform Law:

1. What does Arizona’s autism insurance bill (“Steven’s Law”) do? 

Broadly speaking, the act requires many private insurers to begin covering the costs of diagnostic assessments for autism and services for individuals with autism who are under the age of 16. Insurance providers can limit the coverage for behavioral therapy in the following manner:

• Benefits up to $50,000 per year for a child under 9;
• Benefits up to $25,000 per year for a child ages 9-15.

2. When does the law requiring insurance companies to cover services for children with autism spectrum disorder go into effect?

The law went into effect July 1, 2009.

3. Once the act goes into effect, will my employer-provided health insurance be required to cover my child’s autism services?

Each group health insurance provided by a hospital or medical service corporation, a health care services organization, group disability insurers, or blanket disability insurers will be required to provide coverage for the diagnosis and treatment of autism spectrum disorders.

4. What happens if we get our insurance through a "small employer” (50 or fewer) or through an employer that self-insures?

Insurance provided by a small employer or an employer that self-insures is not subject to the requirements of this act.

5. What if we purchase individual health insurance?

Purchased individual health insurance plans are not subject to the requirements of this act.

6. Are there limits on what our private insurance is going to be required to cover?

Yes. Insurance providers are required to cover medically necessary behavioral therapy services. There is an annual dollar cap on coverage of behavioral therapies that varies according to age – $50,000 for children under 9; and $25,000 for children ages 9-15. There are no limits on the number of visits to a provider. Coverage may be subject to other general limitations and exclusions of the group health insurance policy. However, an insurer cannot place higher deductibles or coinsurance provisions based solely on the diagnosis and treatment of an autism spectrum disorder. Insurance companies are not required to cover services provided outside of Arizona.

7. What coverage is mandated by the law?

The act requires coverage for medically necessary behavioral therapy services provided in the state of Arizona. The act also requires coverage for evaluations and tests needed to diagnose and assess your child’s autism disorder.

8. Is applied behavioral analysis (ABA) covered?

Yes, the law’s definition of “behavioral therapy” specifically includes ABA.

9. Will all of the Autism Spectrum diagnoses be covered, or just those diagnoses with the keyword of "autism?"

Coverage is required for Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder – Not Otherwise Specified, as each is defined in the current edition of the Diagnostic and Statistical Manual (DSM).

10. Does Autism Spectrum Disorder (ASD) have to be the primary diagnosis for the child in order to qualify for coverage under act?

No, there is no requirement that ASD be the “primary” diagnosis for your child to qualify for coverage under that act.

11. Is Case Management covered?

No, insurance providers are not required to cover Case Management.

12. Who determines what services are medically necessary?

The law requires that the services be provided or supervised by a licensed or certified provider in order to be eligible for coverage.

13. Will the new law require insurance companies to cover the cost of social groups? Must it be prescribed by a physician?

The act does not include a "list" of covered services. Rather, the law requires coverage for behavioral therapy. Therefore, coverage under the bill will be determined by the insurance company based on the requirements of the law, whether the treatment is medically necessary, and whether it was provided or supervised by a licensed or certified provider.

14. Can insurance providers charge higher coinsurance, copayments, deductibles, or other out-of-pocket expenses for services for the treatment of ASD?

No, insurance providers may not charge higher coinsurance or deductibles for the diagnosis and treatment of an autism spectrum disorder than for the diagnosis and treatment of any other medical, surgical, or physical health condition under the policy. 

15. What is “utilization review”?

“Utilization review” refers to techniques used by health carriers to monitor the use of, or to evaluate the medical necessity, appropriateness, efficacy, or efficiency of health care services, procedures or settings. Some examples of techniques used include ambulatory review, prospective review, retrospective review, second opinion, certification, concurrent review, case management or retrospective review. (Source: National Association of Insurance Commissioners)

16. What is “grievance review”?

“Grievance review” refers to a health carrier’s internal processes for the resolution of covered persons’ complaints. The complaints may arise out of a utilization review decision or involve the availability, delivery or quality of health care services; claims payment, handling or reimbursement for health care services; or matters pertaining to the contractual relationship between a covered person or health carrier. Some states may call it an “internal appeal” process. (Source: National Association of Insurance Commissioners)

Looking at Legislation - Massachusetts

So they say that Massachusetts has the best legislation out there for Autism Insurance Reform.  I have read the law and its pretty good.  
My thoughts:

- Not bad for the state of Massachusetts.   But lets be honest, this state has come a long way when we talk about health care for the people of Massachusetts.  They had to do a complete overhaul of their state provided health care.  And in doing so they now guarantee that every individual in Massachusetts has to be covered by health care up to the age of 26- either privately or by the state.  This is called the Massachusetts health care insurance reform law or aka Romneycare.  You can read about this on this website http://en.wikipedia.org/wiki/Massachusetts_health_care_reform - yes I know some people don't like wikipedia but I have to say it was very informative.  You can also go to the mass.gov and learn more about their own insurance. - Not every plan is perfect, but this one does seem to have a great one for individuals with Autism.

So below is what they say about the  ARICA. 

Repost from the Autism Votes site - Massachusetts

FAQs On the Massachusetts Autism Insurance Reform Bill (H.4935, ARICA)

ARICA was sponsored by State Representative Barbara A. L'Italien (D-42) and State Senator Frederick Berry (D-7)

What does ARICA do?

ARICA requires health insurers in Massachusetts to provide coverage for the diagnosis and treatment of Autism Spectrum Disorder, which currently affects 1 in every 110 individuals. Read the text of the law HERE. 

When does ARICA go into effect?

ARICA goes into effect January 1, 2011, but implementation will be based on each policy’s specific renewal date. If you have insurance under a policy that is subject to ARICA (see below), the coverage must be provided when the policy renews on or after January 1, 2011, meaning it will go into effect the date that your company’s insurance plan renews annually.

What types of policies does ARICA cover?

Massachusetts legislation can only affect certain types of health care policies, so coverage under ARICA will depend on the type of policy you have. Private insurers, employees and retirees under the state plan, hospital service plans and HMOs would all be required to comply with the mandate. Self-funded plans are regulated by ERISA – which is federal law. This includes many of the State’s largest employers. ERISA plans are not subject to State laws and not required to provide coverage under ARICA.

How can I find out if I have coverage under ARICA?

Contact your employer to verify that your policy is subject to the new law, and if so, what annual date your group policy renews. Even if your company is regulated by ERISA, they may as practice comply with State laws. In addition, there is language in the recently enacted federal health care reform that will eventually cover autism treatment. We will be providing more information for employees covered under ERISA plans – in the meantime, you can access general information about self insured plans HERE.

Are individuals or family members covered for services under MassHealth or CommonHealth?

Unfortunately, there is no coverage required under ARICA. However it is possible for families with MassHealth or CommonHealth to access some treatments through EPSDT. Families covered by MassHealth or CommonHealth, with children under age 9, can also apply for the Massachusetts Children’s Autism Medicaid Waiver through DDS. – Consult DDS to find out the next application window.

Is there a limit to the amount of the coverage?

No. The diagnosis and treatment of Autism Spectrum Disorders will not be subject to any annual or lifetime dollar or unit of service limitation on coverage which is less than any annual or lifetime dollar or unit of service limitation imposed on coverage for the diagnosis and treatment of physical conditions.

Is there an age limit to this coverage?

There is no age limit.

What treatments are covered under ARICA?

The law covers the following care prescribed, provided, or ordered for an individual diagnosed with one of the Autism Spectrum Disorders by a licensed physician or a licensed psychologist who determines the care to be medically necessary:

• Habilitative or Rehabilitative Care – this includes professional, counseling and guidance services and treatment programs, including but not limited to, applied behavior analysis supervised by a board certified behavior analyst, that are necessary to develop, maintain and restore, to the maximum extent practicable, the functioning of an individual.
• Pharmacy care -medications prescribed by a licensed physician and health-related services deemed medically necessary to determine the need or effectiveness of the medications, to the same extent that pharmacy care is provided by the insurance policy for other medical conditions.
• Psychiatric care - direct or consultative services provided by a psychiatrist licensed in the state in which the psychiatrist practices.
• Psychological care -direct or consultative services provided by a psychologist licensed in the state in which the psychologist practices.
• Therapeutic care - services provided by licensed or certified speech therapists, occupational therapists, physical therapists or social workers.

How are educational services affected?

ARICA does not affect educational services provided under an IFSP, IEP or ISP. Insurers are not required to pay for in-school services. Conversely, under IDEA, schools may not require parents to access private insurance for services that are part of FAPE.

Date Night

I have been told by many people since Abbie's Diagnosis that it is important to get away and take time to make sure your marriage stays strong.  In a previous post, I posted a piece just about that, and even if your not married, its just as important to get time away to rejuvenate and cultivate friendships.

Our children are precious to us however you need to have time together.  Children in general need all our time and energy to make them strong and healthy and well rounded individuals.  But if we don't take care of ourselves in the process we can be warned down.  So what do we do.

Well we do a Date Night at least once very few weeks.  Most of the time we talk about Abbie and all the great things she is doing, and missing her. The rest of the time cultivating our relationship.  It doesn't have to be expensive or even terribly exciting,  Just spending time.

Here are some ideas - If you don't have the money for baby sitting - see if a friend or family member can watch your little one for a few hours.

Go to the park - have a picnic
Walk around the mall
Go Downtown and see the sites
Go out to eat
See a movie
and many more....

Course you can do all these things with your child as well, however it's nice to just get a way to regroup and refresh.  That's what we do and it makes all the difference in the world.

Strain on Marriage

I saw this piece and thought it was pretty good.   So I reposed it.  Hope you enjoy

For Better or Worse, and Kids with Disabilities

by Karen Putz

We’ve often heard about the effect of the relationship between parents on children, but what about the high divorce rates among couples with children with disabilites? Does this have to be the norm?
No, according to Dr. Laura Marshak, author of Married with Special-Needs Children (co-authored with Fran Prezant).  Dr. Marshak notes that many studies do point out higher divorce rates; for families with children with autism, there have been rates quoted as high as 85-90 percent. 
“I think that rate is not entirely accurate,” said Dr. Marshak, “and it scares many parents. Despite the fact that divorce rates are higher, at least to some extent, I don't think it is helpful for parents to assume they must become one of those statistics.”
So what can couples with special-needs children do to beat the disability-and-divorce odds?
“One of the first things couples can do is to make a decision to protect their marriage; they must understand that they are entitled to a decent marriage, no matter how many needs their children have,” said Dr. Marshak. “One of the steps involved with this is deciding that their relationship as a couple extends beyond parenting and that they need to devote at least a little bit of time to it.”
Dr. Marshak advises couples to devote just 20 minutes per day to each other, noting that 20 minutes is less than two percent of an entire day. “I think it’s helpful for couples to understand that protecting their marriage is actually good for their children. Often parents of kids with disabilities feel that they will be taking vital time away from their children. Some also feel guilt that they have caused the disorder; that’s another obstacle."
What about counseling for parents of special-needs children?
Counseling can be an effective way for couples to restore balance when things become rocky. Tina Calabro, mother of a 12-year-old son with cerebral palsy, sought out counseling when she thought she and her husband Dave were headed for divorce. Through counseling sessions, she learned how to express her frustration and her reasons for taking over so much of her son’s care. Their parental roles began to shift, and today her husband is a full partner as they raise their son together.
“We stayed together!” Tina shared. “We celebrate our 20th anniversary this year.”
For some couples, having children with disabilities can actually bring them closer. When Beth Donofrio learned that her 6-month-old baby was deaf, it came as a shock. “I spent a whole week crying. My husband was very supportive. Then one day, I woke up and decided that I was done crying and I would do everything I could to communicate with my daughter.  Chris and I took sign classes together, and he was very involved. Those years were actually a good time in our marriage.”  Beth and Chris later divorced for reasons unrelated to her daughter’s disability. They remain close friends today.
Special-Needs Children = Special Attention to the Marriage
Finally, Dr. Marshak shares a wonderful quote from a parent of a child with Fragile X Syndrome:  “The advice I give to couples who sail into a storm and are fighting is: ‘Don't hack at your boat in a storm. If you are in the middle of a crisis, don't take the very support you have and start whacking at it, because that is dumb. You should love, nurture, and care for the other person or you are not going to make it through the storm.’"
Communication Tips for Keeping Your Marriage StrongDr. Marshak recommends these actions for avoiding the "disability and divorce" syndrome:

• Use empathy with your partner
• Reflect back what you understand
• Avoid dangerous comments
• Compromise with each other
• Be flexible
• Keep arguments from escalating
• Fight fairly
• Make repair gestures

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Dear Shopper

This is a re post from flappiness is: - From :"Autism understanding and acceptance page on Facebook".  I just thought it was a great read.  Abbie doesn't act out in stores yet but you know one day it will happen.  It happens to every parent.  Enjoy the read.  


Dear Shopper,
Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.
Clearly, you have raised your children better than me.
That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.
I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.
This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.   So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.

My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.
Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  There IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it’s loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you is that much more upsetting for him.
I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others, and, sometimes, even the grocery store.
I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality hidden behind the mask of fear, anger and frustration.
Who knows?  Maybe I’ll get to see the one hidden behind yours.

Christmas

You remember as a kid the anticipation of what your going to get from Santa.  I remember it so clearly, couldn't sleep, and trying to seek a peek - and my parents saying if you don't go to bed  - Santa is not going to come.  So slowly I would get back in bed and finally go to sleep, only to wake just a few hours later to my parents saying Santa came, come in to my room and getting me up.  All the while telling me "lets see what he brought you".  I remember running in to the room so excited I could hardly contain myself.  Then sitting down as the family passed out gifts and we started to open them up wildly, looking a the gift then setting it aside, and opening another until they were all opened.  Then it was play time.  One year getting the bike, one year as I got older getting the boombox with a tape player,  then another year getting my first TV for my room and so many many more memories.

This is what I thought of when we did Christmas this year.  You see the first year we had Abbie she was so small and didn't realize or understood what Christmas was, then last year she was older but yet didn't have much interested.  So this year - (she is almost 3)  I was excited because I thought she will know now.  But you see with a child with Autism they think just a little bit differently about Christmas. 

When she saw the tree this year she looked at it and went straight to it and almost knocked it down.  Then it was the ornaments, we had to move those up the tree!  Which I found out is normal for children her age! YAY.  So as Christmas day approached.  We took her to see Santa, and she was so tired she fell asleep, then the next time she saw Santa she had no interest in him at all.  Didn't want to look at him or even respond.  But that is ok she is like that with others a well.  We talked alot about Christmas and Santa with no avail.  So two days before Christmas she found her toys in our office and wanted to play with them, and I thought oh wow she is going to love Christmas morning!

Christmas morning - She wakes up and comes in to the living room, all her gifts are under the tree wrapped and a big Santa gift just under the tree.  What does she do, (I laugh at myself) She looks and then turns away a goes to her other toys and starts to play with them taking no notice to the ones under the tree.  So we redirect her to the tree where see the Santa toy.  And she starts playing with it, it was so great to see.  But still she had no interest in the wrapped gifts.  I sigh to myself and it all comes to me that Christmas with Abbie will be just a little be different.  She will take her time will study and play with each toy and will enjoy the experience as she goes.  So it took us nearly 2 1/2 open 7 gifts, but each gift was special to her, and new and exciting. 

I think that is what Christmas is about, learning that everyone reacts differently and no one way is the right way.  So Christmas at our home was joyous and exciting as we explored each gift as if it was the only one under the tree.

Learning - Legislation

So I am starting the long process of learning about Autism Legislation.   That's right!  Because evidently our Government doesn't regard Autism as something that is effecting our families in the good old US of A.

Even our State government is not!  Well in Tennessee that is!  There are so many states that have adopted legislation that supports Autism and Insurance Reform to protect the individual with Autism. 

Right now in Tennessee there is nothing of substantial help for those individual with Autism to get help from insurance companies.  You see the therapies that individuals with Autism are mostly not paid by insurance.  Can you believe it! And the most relevant, current, and most effective treatment ABA therapy (Applied Behavior Therapy) is not paid by insurance AT ALL, because they say its experimental.   This treatment has been proven over and over again through out the years the effectiveness and yet insurance won't pay! 

However, most states (NOT TENNESSEE) has mandated by legislation that Insurance has to pay for the ABA because with this treatment the individual is more productive and successful in life.

So now I have to read and understand the other state legislation - like the one on Massachusetts - to see how I can make a change in the Tennessee State Legislation.  Or write my own bill and get someone to sponsor the bill.  The Federal Legislation is good for now but it doens't effect the State legislation and since this is a state issue, I have to do something.

So beware!  I will arm myself with the best knowledge and understanding!  Then with the people that can help me make a change.  I am not just an passionate Autism Mom, I am individual who believes that if you have an dx that can be treated that insurance should morally and ethically pay for it!  Since I have to pay my premiums, copay and extremely high deductible.  They should have to do their part, that is what I am paying them to do!  And in order for this to happen the state needs to make the insurance companies to comply!

OH BOY - I hope I have a thick skin to work through this, because it doesn't happen over night.

The frustrations of Feeding

We been struggling since we got Abbie with feeding.  She was so small when we got her and was still like an infant.  But when she turned 12 mo old our pediatrician said lets move her off the bottle to table food.  Little did we know she was not ready for table food.  It was like trying to feed a 3 mo table food.  Even though she was 12 mo old she was delayed and just not ready - and thus begins our road to feeding problems.   She did finally start eating table foods but over time has dropped most of the foods she ate.  And today she eats only a few items and drinks a high calorie shake.  Thank goodness for that and whole milk!  We struggle every day, every meal to get her to eat and try new things, but to no avail.

We started feeding therapy with an OT and well that didn't go well.  The OT said she couldn't do anything until Abbie can mimic her movements and have more control over her tongue.  That is easier said then done, if she didn't already struggle with Autism.  But since she doesn't want to look at you in the first place, how is she going to mimic you! ERR.  So instead of continuing and working through it she stopped the feeding therapy without letting us know.  How crazy is that.  When we questioned her about it, she gave us the excuse above.

So we had another feeding evaluation done, by another group of individuals and they said she needed feeding therapy.   So now we do feeding therapy two times a week and its so very hard to watch her do this therapy.  The OT is so good with her, and patient with her but Abbie still has a very hard time.

At home well you can only imagine the frustration.  Its so very hard for me to understand why.  I enjoy food and it just so different.  Abbie gets so upset, cries and even throws the food off her plate.  It bothers her so much to have food in front of her that she doens't want that she can't even move on to eat the foods she likes.  And she sometimes gets so worked up that she will gag and throw up, all because she doesn't want to eat what we presented her.

People say - Oh don't worry she will eat if she gets hungry!  THIS IS UNTRUE!!!!  She won't - she doesn't understand.  When we first got Abbie she never cried or asked for food, I had to be on a time line so that I wouldn't forget to feed her, because she never told me she was hungry and even today she doesn't tell me - So every three hours we give her something - her shake or we sit down for breakfest, lunch, or dinner.  We never miss a meal or shake time cause she needs it.  Yet she won't let us know if she hungry.  

Today it was hard she didn't want to eat anything but her puffs and shake nothing else.  Thank goodness for the generic brand of Boost because with out that I would be so so scared.

Now we wait and see if we need more intensive feeding therapy - which cost more money - but what can you do!

Worried Mom

Facts of Autism

Here is what I have found that is amazing say the least.


Statistical information so you can understand the magnitude of this diagnosis related to other diagnosis.

1 - 110 children will be diagnosed with ADS (Autism Spectrum Disorder) - Boys are 4x more likely to be diagnosed than Girls (so my little Abbie is in the minority and rare)

More children will be diagnosed with ADS or Autism this year than Pediatric aids, juvenile diabetes or childhood cancers combined! - This is extordanary


THERE IS NO CURE

COST:  is 35 BILLION - that"s right 35,000,000,000 - Can you wrap your mind around that!!!!

Autism - affect 1-110 Funding 79 Million

Lets look at others to get a perspective why don't we.

Leukemia - affects 1 - 1,200 Funding 277 Million
Muscular Dystrophy - affects 1 - 100,000 Funding 162 Million
Pediatric AIDS - affects 1-300 Funding 394 Million
Juvenile Diabetes - affects 1-500 Funding 156 Million

2010 Budget of the National institute for Health - Funding for research 35.6 Billion - Only 218 Million when to Autism Research = .6% of total funding

I understand the need for all these, I have and most like will continue to support some of the causes if I have any thing left over after we provide for Abbie, but this is ridiculous.  And to be perfectly honest, if it didn't effect us I would most likely not know this information right now.

So please understand that there is so much that goes into this Diagnosis!

Autism Treatments

Once I got over the initial shock of the diagnosis, it was time for me to get to know this beast - AUTISM.

To much is out there regarding autism from very mild to very extreme.  It is very hard to weed through the stuff to get the right information.  There are so many books, materials, ect out there on how to treat Autism.  As I mention earlier there is no real treatment plan, it's just what works for your child.  The problem with this type of approach is you have to weed through the crap to get to the good stuff. 

The one standard of care that everyone seems to believe is true: is the amount of treatment that needs to be done, and the earlier the intervention the better for the child.  What is that standard of care at least 25 hours of intensive therapy, by Speech, OT, ABA (applied behavior analysis), feeding (if needed), play groups with peer groups, home therapy, play therapy, music therapy, preschool, ect.  This can be overwhelming I know cause I am smack in the middle of it.

The Cost is NO JOKE!  Its a wonder why parents just can't do this, and that so many children do not get what is needed because the cost is so high, and there is not a lot funding out there for Autism. 

Power of Friends who understand

After we received the diagnosis of Autism, we went on line and found the Autism Society of Middle Tennessee.  They were so sweet and understanding.  They sent us this packet to let us know about all the resources that are out there and available for Abbie.  They also have educational programs that have any thing to do with Autism.   Plus they send out this resource "The First Hundred days after diagnosis".  It was so very informative and needed.  What a great resource.

While I was talking to the lady at the ASMT, she told me about this group on Facebook.  This group is a play group for children on the spectrum, in our area.  I was interested and decided I wanted to know more.  I contacted the person in charge of the group and was invited to be a part of the group.  Its a closed group, it's great because you can ask and put feelings down and not have to worry if other people can see.  And, through this group, I have met some very strong moms and dads that deal with the same things I am dealing with, some more extreme then others but still.  What is even better is the resources, the understand, the advise, and the words of encouragement.

I didn't realize how much I would appreciate this group until just recently when the moms got together and had a great time just being moms, not talking to death about Autism but just being.  They understand there is a time to talk and there is a time to just let go, even for just a few moments.

Its just they understand and there is no judging going on when I voice a concern or need.  Its just great, and has been a life savior to me and my family.  I have learned so much from different therapies, to how to deal with the school system, ect.  The wealth of information from those who understand its a powerful thing.

Now What

Now we have the diagnosis.  It confirms what is going on with Abbie and Now What.  I didn't want to do anything to be honest!  We just continued doing what we were already doing, which is about 15 hours of therapies a week.  However, I didn't want to read, hear, or talk about the situation.  I just couldn't.  I gave myself a few months to adjust to the diagnosis and start working toward the healing process.

I do find that when you state your child has Autism, its hard for people to understand.  Because the saying is "one child with Autism, is one child with Autism".  The thing about Autism is that it effects each child differently.  Its not like diabetes, childhood cancers, ect.  All those have specific treatment plans, they know for example what to do if a child is diagnosed with a cancer, what treatments to give and what the prognosis may be, the child hopefully survives and moves on with their life. 

However, with Autism - its NOT CLEAR.  There is no set treatment, there is not set prognosis, there is no right or wrong way for therapies.  This is mainly because each child is different, each child responds to therapies different, what works for one child may not work for another.   There are standards though.    They say a child with Autism should have at least 25 hours of therapies - either through group play, OT, Speech, ABA, ect.  But is 25 hours enough, is it to much.  WHAT - there is NO CURE.  Your child may be able to cope and develop ways to interact with people and school but will always have to deal with Autism and the prejudiced that come with it.

Then you have the issues of dealing with people who don't understand what Autism is and treats your child differently.   They JUDGE you because your child has a meltdown in the store, and they don't understand that your child maybe having a sensory issue or just doesn't understand the social aspects.  They give you dirty looks and comments on how they would solve the problem.  They treat you like you are bad parent and don't know how to discipline your child!  Its crazy!

There is a friend I met who responds to this in a very interesting way.  Instead of them confronting the individual and trying to explain the situation she had small business cards made out that said my child has Autism - and explains what that means.  She just gives it to the person and walks away.  At least now they understand and will stop making comments or rude looks.  I think that is a great idea and I am so going to use this technique.

Now after several months to let myself adjust to the new diagnosis, I started reading, getting involved, and trying to understand what is best for Abbie.  There is so much out there.  You have to weed through the bad to glean the good information.  So now, I find what is best for Abbie, so that she has positive and awesome experiences and learns and grows and becomes a productive and secure adult.  But that is long way to go, she is only 2 3/4 old almost 3 and we have many moons to go! 

Autism Diagnosis

We decide to do the testing May 2011.  We also got on the Vanderbilt waiting list for the Autism testing.  We decide to go ahead and have the testing done through the WAVES program in Franklin, TN and TEIS supports the testing.  So they had someone come to our home and asked us lots and lots of questions, then they watched Abbie play for about 30 minutes, then video taped her play for another 30-45 minutes, all the while asking us questions.   Then the next week they had the the team go and observe Abbie at her developmental play group for three hours.  After that we met with the team, an OT, Speech and Autism therapist and physiologist that specializes in Autism testing.  We talk and they observe Abbie that was about an 2 hours session.  Then we wait.

On May 11, 2011 - I will never forget the day.  It was beautiful outside.  Not to hot but it was May.  We walk into the room to get the report what they found and what to do next.  The director of the WAVES program was there and the Aimee Lyst PhD physiologist what specializes in Autism testing was there to give us the results.  I knew something was up, when they had tissues on the table in front of us and they were not smiling.

She starts explaining the testing and what test they did (DAYC (Developmental Assessment of Young Children, ADOS (Autism Diganostic Observation Scale, and CARS (The childhood Autism Rating Scale) and explains why they do each test.  Then they start with the results.

DAYC - test the standard score for her age is 80%  she received 9% - Rating below average - tears start.  They still are even as I write this, the tears are starting.  Then they move on to the ADOS

ADOS - Here is what they said. "The ADOS consists of standard activites that allow the examiner to observe behaviors that have been identified as important to the diagnosis of autism spectrum disorders at developmental levels and chronological ages.  Scores in the area of communication above 4 are considered in the autistic range and scores above 2 fall in the autism spectrum range.  Abbie scores in the area of communication was a 7 which falls in the autism range.  Scores in the Reciprocal Social Interaction area that are 7 and above are considered in the Autism range and scores that are 4 and above are in the autism spectrum range.  Abbie's score in this area was a 12, which falls in the autism range.  A total combined score of communication and social interactions of 12 or above is considered in the autistic range and scores between 7 -12 are considered in the autism spectrum range.  Abbie overall total score was a 19, which falls in the autism range.

CARS - Here is what they said. " The CARS is a 15-item behavioral rating scale developed to identify children with autism spectrum disorders and to distinguish them from children with development delays other than autism.  The CARS was administered via observation and parent report.  Scores of 30 or above are categorized as "autistic".   Abbie obtained a total score of 36.5, which fell in the autistic range.

With the testing complete - the recommendation for Abbie.  Since does meet the diagnostic criteria for Autism 299.0.

Silence - tears rolling down my face - I can't respond - I can't hardly breath.  I can't believe the information.  I can't hear what they are saying - but I see them talking, talking about what to do next, how to move on with this dx, I can't hear them, I can't stop the tears, I just can't stop the tears.

Fighting it will all cost

So, Abbie is growing, learning, and is still delayed at her 2 year evaluation with TEIS.  They recommend that we start going to the 2yr old development play group two days a week for three hours, on top of starting Speech and OT 2hr x 2 days a week, and have an in home therapist once a week for development and family training on how to play and grow.  So we do, I say lets do it, let get her what she needs so she will be ready for preschool when she is three!

Then we start our development play group.  She walks in and doesn't even look at anyone, goes straight to a puzzle and plays with that toy for a moment then moves on.  Mouthing everything.  Doesn't even look at me (but she really wasn't giving us eye contact at all anyway).  I leave her and she doesn't even know I left.

I thought at the time we may have been experiencing attachment disorder - which sometimes happens with adopted children.  So we spent everyday working on holding, eye contact, and responding to her name.  Little did I know it was not attachment disorder.

So we go every week, making some progress but not major ones.  My husband starts doing research and starts to see some signs that Abbie may not be developmentally delayed but something else.  I say no she just needs more time, she will get it, it will click you just wait and see.  The therapies say there may be more to this, I say no give her more time, I know she will come out of it you just wait and see.  For 6 months she makes small strides but no major progress.  Then it happens.  The program that Abbie attends for the development play group asked if we would consider testing her for Autism.  They say she shows all the signs, no eye contact, doesn't respond to her name, doesn't interact with the other children, doesn't focus on one thing for a long or even short period of time, is not talking or even do with other children are doing.  She wants to be isolated and play by her self, and she has sensory issues with food and other items.  I said No your wrong, there is nothing wrong with her she is perfect little girl she laughs, she plays so what that she doesn't play with others maybe she just shy, she is just delayed she was when we got her and she is till trying to catch up. 

You don't know what it feels like when someone tell you that your child may have Autism and should be tested.  She was 2 1/2 at the time.  The denial, grief not for me but for her, the not understanding because of all the nonsense that is out there about Autism, and being scared.

Cried for days, My husband already knew we would be going down this road he saw the signs, I did not want to see it, did not want to do the test, I just kept saying she will snap out of it, you will see just wait.  But my loving husband and dad, said "honey, we have waited - its time now - its time so we can do everything humanly possible for Abbie if she does have Autism and get the treatments started now so she can be successful in life, its all right your a great mom, you love her and she knows and one day she will tell you, but lets do this, it can't hurt and only help."  And I CRIED, CRIED and CRIED!  The fighting is over, I give into the fact that we do the testing and wait and see what happens, maybe she really is just delayed.  That was June 2011

Let the therapies begin

After all the evaluations TEIS did, they recommended several therapies, in home development therapy, OT therapy, until she turned two.  Then we would have other therapies available to us.  - She progress very slowly,  She started walking at 18 months.  It was amazing really she just decided I guess to pull up on bed and turned and walked to me.  It was awesome, got that on video! YES.  She was still not talking at 18 months.  We were busy doing therapies and playing at home. 

You know you really don't know how your child is progressing till you decided to do play dates with typical developing children.  It was so very hard for me, Abbie could have cared less.  She didn't interact with the other children, she didn't even look at them, or acknowledge they were in the room.  I saw the other children going to their parents asking for things, wanting things, crying if they didn't get the item they wanted.  And Abbie just sat there playing with her own toys and then would get up and run down the hall and back, laughing and just in her own little world.  That was hard to realized that yes your child is delayed and maybe something else.  No one can really understand what that feels like unless you have had it happen to you, especially if your children have grown and are typical.

Developmental Delay

Ok, what does developmental delay mean, really.  Everyone learns at there own pace and time.  But with Abbie, she was delayed when she was place in my arms.  We knew she would be from all the stories other parents told of - from adopting from China.  So we were prepared, well as prepared as you could be.

When we got home she couldn't hold her head up and she was almost 8 months old.  But with in a few weeks she was doing it,  then at 10 months she started to roll over, and at 15 months started crawling.   At 12 months our pediatrician and friend finally recommended we should have TEIS - Tennessee Early Intervention Service come out and help her get caught up.  I was so scared and worried, but with prayer and friends, and pediatrician help we did, it was the best thing we could have done at the time and it turn out the best for Abbie. 

When TEIS came out - our coordinator Carla - she did an initial evaluation and it came back seriously delayed.  Then we had two therapist come out and did an OT evaluation and developmental evaluation.  And both came back way below the norm.  I knew she was delayed I just didn't realized  how much until then.  She was not walking or saying words.  She was not playing with toys like typical developmental children did so the start of therapies to get her on track.  I had a very hard time with all of this but knew that she would get on track, it just took some time.  Just some time!  I guess that what every parent says when your in this situation.  Just give it some more time.

History

How do I begin?  I guess we can start from the beginning.  My husband and I decide in 2005 to adopted and we felt God leading us to adopt from China.  We filled out all the paperwork.  They call this the paper pregnancy,  because it takes about 6-9 months to get completely done.  Once we were done we sent all the paper work to China and we log in on March 22, 2006.  Then we waited!  waited! waited! waited!!!!! After 4 very long years we received a referral from China, on a Wednesday at 3pm.  It was Abbie our baby, our beautiful baby girl only 5 months old!  Wow we wanted young and God blessed us with her.  So excited.  It took 2 more months to get visa, passports, more paperwork and then we were off to china.  I went with my sister-in-law Rachel and my best friend Lisa.  My husband stated home so he could be home with us when we got home.  We left for China on Sept 3rd and arrived in Beijing, we were there three days then we flew to Nanchang, China.  When we arrived we went straight to the International Adoption Center and Abbie was waiting for us.  She was so very tiny.  She was only 7 months and weighted 9.67lbs.  So tiny but so cute!  Our first week together Abbie ran a 104 to 105 Fever.  I was so scared.  However, after 4 long days she recovered and we flew to Guangzhou, China.  We came home on September 17th, that is when Andy met Abbie for the first time.  It was all so overwhelming and wonderful all at the same time.   It was the beginning of our new lives as a family and just couldn't wait to see what was in store for us and our future.  God was and is so faithful to us, he provided for us and the wait was long but so very worth it!  I couldn't believe that I could love so much as I do now.  It is just amazing.  She was and is healthy, but we didn't know what was in store for her or us, but we know now that God knew that Abbie needed to be with us and we needed her so now the story begins.