So Now What?

If you're reading this post you've probably been on a crusade to find information. Maybe you were referred by a friend, family member, or care team professional. Truthfully we have been brought together for one purpose and all because of one word: Autism. Do not fear. Most parents don't hear much after receiving that diagnosis, at least the first time. It sounds scary at first, but take it from a mom who has been there, it gets less scary the more you face it. The best description I have ever heard of Autism goes like this: "Autism like a rainbow, has a bright side, and a dark side and even though it can mean rough weather, it can be beautiful."

The first thing you must realize is you are not alone. Autism affects approximately two million people in the United States and tens of millions worldwide. My son, Aiden, was diagnosed with High Functioning Autism in 2013. We suspected he may have this disorder due to family history, but we weren't sure until that fateful day in May when our psychologist confirmed it. So, what do you do now? Research, learn, educate, and explore. Promise yourself and your child you will never stop searching. The more you know the better you can advocate for your child. Dedicate yourself to this path. Autism is a lifelong diagnosis. There is no known cure and scientists cannot find one direct cause.

 Can you do anything? Y-E-S! You can always do something. A diagnosis like this one has the evil tendency to make you feel powerless and hopeless. You are NOT. You are the parent and your child needs you. A lot of this will sound scary and it can be. It is better to know and understand what is or maybe headed your way, than to find out as it comes and have the rug pulled out from under you.

Let’s break down the next 10 steps you need to take on your Autism path:

 1- Read any information your psychologist gave you. They may have given you an informational pamphlet or fact sheet, which is a good start.

 2- Call your family, friends, and talk. You need to talk. Some people feel this diagnosis should be kept a secret. My family did not come "out" about Autism for a year. Every family needs an adjustment period. Start by telling those closest to you. Secure your support infrastructure. Understand some people closest to you may reject the diagnosis and refuse to believe it. Ensure them the child is not damaged. Your child is the same child both you and they have come to love; this is part of who they are. Approximately 36% of mothers with Autistic children were found to suffer from depression and anger. This can be damaging to your marriage or relationship with your significant other, or to the relationship you have with your child. Remember there is no shame at all in seeking guidance for you. There are support groups in place to assist with acceptance of diagnosis. Talk to your diagnosing specialist for more information.

 3- Get in touch with your local government fixtures. What do I mean? In Florida we have a government program in place called Early Steps. Early Steps provides intervention services and therapies for free to families with special needs in Florida until the child turns three. Aiden was 2 and a half when he was diagnosed, this did not leave us with much time. Most children with Autism are diagnosed at school age, we were lucky enough to catch it early. Call your service provider ASAP! Time is of the essence. Here is a link to Florida Early Steps:  

http://www.floridahealth.gov/alternatesites/cms-kids/families/early_steps/early_steps.html

 4- Call your insurance company, if you have one, and get all the information you can about services they will or will not cover. Get them to mail or email you a copy of your explanation of benefits. Know it, study it, commit it to memory, you will need it. If you do not have insurance in the State of Florida offers a program called Florida Kid Care, you can find them here: http://www.floridahealth.gov/AlternateSites/KidCare/

 5- You were probably told to get an ABA Therapist. ABA Therapy is a type of behavioral therapy that involves one on one interaction between the ABA therapist and the child. This type of therapy is frequently used to assist Autistic children gain control of their behaviors. Find an in network ABA Therapist, your insurance company will be able to provide you with a list of in network providers. If they cannot, you must find one that will accept your insurance plan. Be sure to articulate your concerns to your employer about this lack of information, if you find it to exist. When selecting an ABA Therapist, be sure to stress that you want to observe the sessions. You as a parent need to be involved in your child's therapy to maintain consistency when the therapist is not in your home. Here is more information on ABA Therapy:  
http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

 6- Apply for Medicaid. You may get rejected, but you never know. Medicaid is available as a secondary insurance to your primary insurance. It is extremely helpful to have a secondary insurance when dealing with chronic medical issues. Do not rely on Kid Care to forward your application to Medicaid, they will not. I have personal experience with this situation, Kid Care failed to do this for us, despite their literature on their website. Kid Care is a primary insurance organization. To apply, search for the Medicaid application that applies to your state. Here is a link to Medicaid's website: http://www.medicaid.gov/

 7- Apply for SSI benefits. I would suggest opening a minor checking account for your child and direct deposit the SSI checks into that account. This way you can pay for medical care out of one account. Doing it this way keeps all your financial transactions in one place, making things easier for taxes. Keep records of each and every financial medical transaction you make for your child. It all adds up for tax season. Use the SSI money for your child's medical needs; this will alleviate the "money scramble" as I like to call it. To apply for SSI go to the Social Security Administration's website: http://www.ssa.gov/

 8- Be on the lookout for sensory processing issues. Your child may throw their hands over their ears, sit on the floor, scream, and kick or hit you when you touch them as they hear loud noises. Does your child frequently complain about bright lighting, drastic changes in temperature, or refuse to touch or eat certain textures? Any one or combination of these could be an indication of Sensory Processing Disorder. This is lumped into the ADHD or ADD diagnosis. If you suspect Sensory Processing Disorder please speak with an Occupational Therapist. To read more about SPD you can check out this link:  http://www.spdfoundation.net/about-sensory-processing-disorder.html

 9- Also be on the lookout for seizures. As many as 1 in 3 individuals with Autism also have epilepsy. There are six different types of seizures, so don't just watch for the stereotypical gran mal seizures. You also need to watch for absence seizures, tonic seizures, clonic seizures, myoclonic seizures, and atonic seizures. Don't panic, just be aware. If you suspect seizures in your child please contact a neurologist and get them tested. For more information on epilepsy as it relates to autism and types of seizures please read this article:  http://www.autismspeaks.org/family-services/epilepsy

 10- Seek out informational classes, meetings, groups, and organizations. Become a member and get involved. I am a member of the Autism Society of Greater Orlando and have attended classes through my local CARD program. CARD is a free resource and stands for Center for Autism and Related Disorders. CARD is housed in all major universities in Florida and they provide free events and classes to you and your family. These are a great benefit to you and are surprisingly informative. Please do not pass up this great program and what it has to offer.

This is a link to Florida's CARD program: http://www.autismfl.com/card.html    

Here is the link to CARD's website: http://www.centerforautism.com/

A bonus tip for you: Start a filing system for your child's Autism. I have two, twelve pocket, accordion folders currently and they are both full. Use whatever works best for you. Your care professionals will thank you for your diligence and will be impressed with your organization.

 Please remember, I am a parent posting through my own experience, I am not a medical professional, but I am here for you. You can post questions on this blog or on our Facebook page:  https://www.facebook.com/AidensHereos

I hope this information has helped you break through the haze and gives you a clear road map to help you begin your journey. I leave you with the quote that got me through my first month of restless nights, crying spells, and frustration: "Love Conquers All".

 May you find peace and blessings on your journey. Come back frequently for updated blogs and friendly advice.