Getting Through the Process

*Originally written 12/18/17

What started out as an obsession to make my son “better” turned into the responsibility as a parent to be the voice for my son that he didn’t have.  And it is a responsibility that I take very seriously.  My natural curiosity compelled me to study and learn the laws under the IDEA (Individuals with Disabilities) act, that ensures that my son has the right to a free and appropriate education and that whatever accommodations are supposed to be provided for him per his IEP (Individualized Education Plan), are provided and then some.  I make it my business to know everything there is to know about his teachers, providers, and his therapists;  I ensure that all whom I’ve entrusted the care and education of my son are very much aware that I’m educated and know how to fight for my son.  And because of this, I am confident that regardless of whatever school district the good old Army decides to send us next, I will be ready and armed to make sure my son has a fighting chance at success.
The rates of Autism diagnosis are climbing at an astounding rate.  As of 2014, the Center for Disease Control and Prevention (CDC) indicated that 1 in 68 children were identified with having been diagnosed with Autism Spectrum Disorder (Autism Speaks, 2017).  As you can see, these numbers show that there are quite a number of children and adults in our country that are living with Autism.  And because it’s such a tricky condition, due to the spectrum of it all, it can be challenging to figure out exact treatment plans.  Different approaches are necessary for the differences in each child; there is no “one size fits all” approach to Autism.  For example, most people have a hard time believing that Noah has Autism because he seems to be very social.  And I heard this from those who are educators!  While Noah is a social kid and likes being with friends, he struggles with initial eye contact and introductions, especially with those with whom he is unfamiliar.  He also demonstrates frustrations very easily when it comes to things that he doesn’t understand (math homework anyone?) to the point when he can shut down and become unresponsive.  Furthermore, he struggled in the beginning of the school year with adjusting to the morning routine (from coming from the playground to getting ready for class to begin).  He’d have the need to move around frequently during instruction time and would forget to raise his hand when needing to say something, choosing instead to blurt out whatever came to his mind.    So as you can see, Autism strikes kiddos in many different ways.
It is not your responsibility to figure out what “type” of Autism your child may have; leave that is up to the professionals.  Instead, it is your job as a parent to be an advocate for your child so that he or she has access to those services and professionals that might best fit their unique needs.  Below I’ve listed out some helpful tips to those who might not know where to begin or what to do next.

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1.       Know that you are not alone.  This might not be a tip but I always like to start with this sentiment.  It can be hard to stomach that your child might be different; that their path might stray a bit from what you’ve envisioned for them.  You have just joined a community of families who have walked this path before.  It will not be easy, and there will be days and nights that you’ll wonder “why”.  But just know that your child was chosen for YOU and that despite any doubt you may be feeling, you were made for this!  Take a deep breath…you got this, Momma/Poppa!  And we got you!

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p/c usnews.com

2.      Study up!  Yep, I know.  You might be out of school and I know that if you are not a reader, studying laws and blah blah blah might not sound like the greatest way to spend a Saturday night!  But it is important that you are educated, Momma/Poppa.  With this diagnosis, it is very likely that your child will have an IEP one day.  And unfortunately all too often the public school system has and will take advantage of families when it believes that they are not aware of their rights under the IDEA act.  KNOW YOUR RIGHTS and never go to any meeting without the proper documentation necessary (and there will be plenty).  If you are military, you have so many resources for free it is not even funny.  You have a right to have a representative from the Exceptional Family Member Program with you at any IEP meeting.  If you are not military, reach out to local organizations or Autism speaks about finding someone who can be at your corner.  These meetings can be a bit scary, especially since it’ll seem like you against the world (or in the school’s case, it is often the Special Education teacher (SPED), general education teacher, a school nurse and/or counselor, possibly a psychiatrist or any other specialist that might see your child or have tested your child, and maybe even the principal.  There will be a lot of information thrown at you.  Make sure you come prepared and ready to take notes and ask questions!

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p/c fda.gov

 

3.      Join a group.  I know it sounds cliché but it is so comforting to belong to a community that understands you.  When your child is first diagnosed, there will be a ton of information thrown at you.  And no matter how zen you’d like to imagine yourself to be, it will be overwhelming and you might feel stressed.  One thing you can do to help alleviate this stress is to find a group of people who get what you are going through.  Whether it’s an official organization, like Autism Speaks, a local community-based one, or even a group on Facebook, it can be so helpful to align yourself with parents and family members who are or have been on this road.  These people can point you in the right direction to get the best resources, therapists, doctors, schools, etc.  And it’s always good to have someone to vent to.  We are human after all, and there are going to be times that having a child on the Spectrum will suck for you.  You will feel overwhelmed and powerless sometimes and it is good to have a safe place where people won’t make you feel like shit for complaining once in a while.

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4.      Stay the course.   It can be tempting to give up, especially if your child is seemingly making improvements.  While he or she might not necessarily need 12 hours of ABA (Applied Behavioral Analysis) anymore, it doesn’t mean that the services should go away completely.  Always be open to new and different experiences that might fit your child better as he or she grows into adulthood.  Never, ever give up on your child!  And never, ever doubt your abilities as a parent.  You are doing an awesome job!

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5.      Focus on the can, not the can’t.  It is often easier to focus on what your child can’t do.  Isn’t that why, after all, he or she has been diagnosed with Autism in the first place?  As parents, we don’t set out to see the negatives in our children, but as time presses forward it can be hard not to take notice, especially in light of such necessary evils like Facebook, where we are consistently bombarded with pictures and dialogue of all the wonderful achievements everyone else’s child seems to make on a daily basis.  Every child has special gifts and talents that make him or her awesome in his or her own way.  It is our job as parents to find what that is and encourage it.  Often children with Autism excel highly in one or more specific areas.  Perhaps they love to read and become engrossed with the characters they read about.  Maybe they have a fascination with history or cars or trains or science.  Maybe they are good at taking things about to see how they work and then putting them back together again.  See the good, and run with it.

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p/c Google images

6.      Live your own journey.  This was a hard one for me.  I spent much of my life worrying about the things I didn’t have and more concerned about the lives of those around me rather than my own.  This is a very bad thing, friends.  VERY BAD.  I touched on this in the previous tip.  Facebook and Instagram are indeed the necessary evils that seem to have invaded our everyday lives.  Every day it is almost impossible to avoid seeing or hearing about the seemingly perfect lives of your friends and family.  This can be especially hard for those who have kids with challenges.  For example,  around the time Noah started Early Intervention, I found it very difficult to read posts from friends who had kids around his age describing conversations had with their children, even posting paraphrased statements their children had made (kids do say the darndest things).   I was in a low place at the time, blaming myself for Noah’s challenges.  And although it was no one’s fault, seeing posts like these made me feel even worse.  I had to learn that to be the best advocate I could be for my son, I had to disconnect from the experiences of others.  This was my journey; this was my son’s journey.  And I had to learn to live in mine, so my son could thrive in his.

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p/c Shay Middleton Photography

7.      Be thankful.  This kinda goes without being said.  We should always be thankful for everything in our lives, both the good and the bad, the easy and the hard.  There will be times when you will ask yourself “why my child?”  There might be times when you feel jealous or resentful of your friends who seem to have “perfect” children.  Well, first of all, no child is perfect.  And second, despite what you might see on “the book” or “the gram” all of us moms are losing our shit… some just hide it better than others.  You never know someone’s struggles except for what they want you to know.  Despite whatever struggles might come with this diagnosis, and there will be some, always remember to be thankful.  Your child is perfect, just as he or she is.  Be thankful for all your child is and all that he or she will one day become.

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