Imagine finding out your child has a disorder that will affect them their entire life. After you move past the initial discovery, you become aware that they'll need to visit doctors, therapists, and other specialists on a recoccuring basis. That visiting these specialists will be vital to your child's well being.
Now, imagine being told you're going to have to cover almost all of that out of your own pocket.
That's what happened to my friends, Tiffany and Zack, with their 3 year old, Emma.
Alabama is one of seven states that does NOT provide insurance coverage for the 50,000 familes affected by autism. THIS BLOWS MY MIND. Why?
Before they were even given the diagnosis, they had to go through several tests and evaluations. None of those things were covered. After finally receiving a diagnosis, they were told Emma's first visit to the psychologist would be covered. Insurance will cover her outpatient speech therapy for 12 visits, minus the co-pay and any extra service or items she needs related to that therapy. They are only allowed one visit per week. After the 12 visits are up, they have to re-apply for more visits, which can take up to a month to approve or deny. In the meantime, they'll have to pay around $100 a visit. If they are denied more visits, Tiffany and Zach will have to pay $100 per week until the new year.
Here's another example for you. Applied Behavioral Analysis is a standard austim therapy. It's not covered. It can cost anywhere from $50-$150 per hour, with a recommended 10-40 hours per week. Go on, add that up. That's only one type of therapy.
A recent study published by the Journal of Autism and Developmental Disorders estimates that costs related to autism will reach $461 billion by 2025.
There's a lot more to be said about this particular issue, but that's not the only reason for this blog post.
The things I want you to take away on this topic are:
1. This isn't okay. A person who is born with a developmental disorder should not have any less support than a person with any other disorder.
2. Help push for a change! Help spread the word that #autismmatters.
- Write to your representative (f you sign the petition, you'll get easy instructions on how to do this!)
- Attend a Walk for Autism 5k. You can sign up for one right here in Calhoun County, HERE.
- Post to social media using the hashtag #autismmatters
- Donate. I have pledged to raise $100 for the Autism Society. Click here to help me reach that goal!!!
- Wear blue on April 2.
April is National Autism Awareness Month, and World Autism Day is April 2. So, light it up blue and shine a light on autism!
You can find more information here.
The other reason for this blog post is to help make you more aware.
Austism affects a person's personality, characteristics, and communication. It affects their past and it will affect their future. It affects all of the person, not just part of the person.
Autism Spectrum Disorders are puzzling dissorders that currently have no cure. It covers a wide range of symptoms and conditions. Every person with autism is affected differently. It affects both neurology and development. Being autistic doesn't mean that person can't accomplish or achieve things, it just means the path they take to arrive there is different. In fact, many autistic people produce strengths such as attention to detail, concentration, and passion for special interest. Just because they can't communicate to you verbally that they understand something, doesn't mean they don't. It's just means they need to communicate in a different way.
A person with autism can perceive things differently. Things like your tone and facial expressions can throw them off and be interpreted differently than how I might interpret them.
Some things to consider when interacting with someone autism.
1. Be patient & understanding.
2. Don't judge!
3. Be clear when communicating.
4. Be genuine.
I asked Tiffany if she would mind giving me some input for this post. Here is what she said:
"Autism wasn't something that even crossed my mind before Emma's 2nd birthday. In everyday life, I barely saw or heard anything about it but now, it's consumes us. Every thought, plan, day and decision is filled with words like: "meltdowns, IEP, therapy, is the iPad charged?, essential oils, and routines." Most people when we told them that Emma had been diagnosed on the Autism Spectrum replied with "I'm so sorry, are you ok?" Hell yes we're ok! While some days are challenging, Zack and I are elated to actually have a name, a reason for why Emma has some differences from a "typical" 3 year old, but there are so many things about her that are 100% typical. Emma loves Frozen, playing outside and just being silly. While there are so many people on the spectrum that suffer from severe symptoms, Emma just happens to not be one of them. However, that doesn't make our journey any less significant. She's very low on her verbal and social skills but, through therapy and continual attempts at socialization she is improving quite well. In fact just today she said the word "shake" today while shaking rattles...and her booty! Our world is quite different from most families but, even with our daily struggles I wouldn't change a thing about it. The biggest way to help us? Educate yourself! Get truly informed about different versions of spectrum disorders because EVERY AUTISTIC PERSON IS 100% DIFFERENT. For those of you that have children, educate them...and ensure that when they encounter an Autistic person/classmate/friend, they are better equipped to understand them."
At the end of our visit Emma inititated and gave me not only one, but THREE hugs!! This was huge. I don't think I've ever received a hug from her before. Melted my heart to. pieces.
Emma is a little girl who deserves all the opportunities this life has to give her. Please help me fight for her.
Slideshow music: www.bensound.com