First I want to say I love you. I love your son and all of your kids. You are a great mom and you will get through this. I, too, have sat in your exact spot. Shock. Disbelief. Guilt. Anger. I am sorry for you pain. I wish I could take it away. I know I can’t, but I can share some of the things I’ve learned and give you some advice I wish someone had given me.
I know the idea of autism is scary. I know it feels like your world has just spun off its axis. The very word feels like something you wish you’d never heard, let alone uttered across your lips. You feel like you want to take a shower and wash it all away. “Autism isn’t my boy.”
The label sucks. It feels dirty and accusatory. I hated it. The thought of your baby boy having autism feels like an insult. I remember feeling betrayed by the diagnosis. Like I didn’t know who Finn was at all. How could I not have seen it? Why didn’t someone tell me? I’d spent 3 1/2 years thinking I knew Finn and all of a sudden he was someone else.
Turns out, he wasn’t someone else. There was just a facet of him I hadn’t seen before.
I didn’t want the label. Or the IEP. Or the “special needs mom” title. I didn’t want it. It wasn’t part of my plan. It wasn’t who I was.
But it is. It’s who he is. It’s who I am. And some things aren’t up to me.
Much as I hated the diagnosis, I knew there was no turning back because, for us, ignoring “the label” meant going back to fitting a square peg into a round hole. I tried everything and nothing worked! Sticker charts. Time out. Consequences. Extreme praise. M&Ms. Watching “the Supernanny.” Reading every parenting book. Chat rooms. I was open to anything. My husband used to joke that I was following the “Parenting Book du jour.” What could I do? I was desperate! At least the label gave us a game plan. As confusing as it was, at least there was a reason for his behavior! The label helped us see that what Finn was doing wasn’t his fault. He wasn’t being diabolical or manipulative. He was trying to tell us something.
Thank God we heard him!
You are entitled to not believe it! I know I didn’t! Do you know how many times I did the M-CHAT (Modified Checklist for Autism in Toddlers) online before we got Finn a diagnosis? I thought getting Finn tested was just a formality… you know, to rule it out, not in!
You can get a second opinion if you want. If the person who diagnosed him didn’t do the Autism Diagnostic Observation Schedule (ADOS), you should certainly have that done. It is considered the “gold standard” in diagnosing autism. Finn had the ADOS done and I still didn’t believe it! “He was having a bad day. How can she expect him to answer her when she just pissed him off? She was wearing socks with thong sandals for God’s sake!”
If you can, you should try and get a “team diagnosis,” where a developmental pediatrician, occupational therapist, physical therapist and speech therapist all look at your child in one day. Then they all sit down and diagnose your child. It would give you the most accurate picture of his autism. But, if you already have the diagnosis, your insurance may not pay for a team diagnosis. And the waiting list for those kinds of appointments is generally about 6-12 months, so I’m going to forge ahead with some practical advice…
In the meantime, check out Autism Speaks’ Glossary of Terms. It is not comprehensive, but it explains many things children with autism experience and it’s a good start. It will help you understand what he does or doesn’t do. At the very least, it will give you some of the buzzwords to use when talking to doctors and therapists. I found something new that Finn does when I clicked on it to link it here! Even now I am still learning.
This isn’t your fault! There is no known cause of autism. You didn’t expose him to something that caused it. It didn’t happen at birth. He didn’t eat too many red M&Ms or hot dogs or non-organic foods. There is nothing you could’ve done to change things. Stop thinking that right now. It is not a productive place to be.
This is going to change you. I wish I could tell you that you will be the same on the other side of this, but it’s simply not true. It’s impossible. After the pain and confusion subsides, you will attack this with the vehemence of an angry bear. But there’s a gentle side, too. You will see the wonder in the minuscule and glory in the mundane. Because you realize what a gift even the simplest of things can be. Your life isn’t over. This is just the beginning of a new one. A richer one.
There was a time when I wanted to bury my head in the sand and never think the word autism again. My brain felt like it was shaking around inside my head and if I heard or thought of the word again I was going to explode! But I knew, deep down, that burying my head in the sand was only going to help me cope. What about Finn? I owed it to him to put on my big girl pants. I had to decide to be strong because, believe me, I wasn’t born this way.
You know your kid better than anyone! I realized that the Dr’s don’t know my kid better than I do. Neither does Autism Speaks or the Child Study Team or Autism for that matter. I KNOW MY KID. He wasn’t going to do every little thing the books and blogs say autistic kids do. His autism is as unique as he is. His diagnosis opened my eyes to who he is, but it didn’t define him. It didn’t change who he is, it just broadened my understanding of him.
Think of it in smaller chunks. Think of autism as an umbrella diagnosis that stands for a little bit of a lot of different things. Some diagnoses that can fall under this include: ADHD, Anxiety, Auditory Processing Disorder, Communication Disorders, Executive Function Disorder, Obsessive Compulsive Disorder (OCD), and Sensory Processing Disorder. When you break it down like that, it doesn’t seem so scary. Overwhelming? Yes. But it helped me to see all of what Finn’s challenges were. I could fully admit that Finn has a little bit those things, but it took me a little while to swallow the autism.
Make some phone calls. This part may seem overwhelming, but I promise you, this will be the most productive thing you can do! Call your insurance company and see if they have an “autism coordinator” or someone who can help you figure out your benefits.
- You may have mental health benefits that will cover Applied Behavior Analysis (ABA) Therapy, which will help you understand why he does what he does and how to respond to it! Only about 20% of insurance companies cover ABA right now, but it’s worth looking into. Our ABA Therapist does Functional Communication Training with Finn and that has made unbelievable improvements in his behavior.
- Get an Occupational Therapy evaluation. He may have sensory issues that are contributing to his behaviors. This will probably be the most revealing evaluation you can get. It was for us.
- Get a Physical Therapy evaluation. He may have physical delays that can cause clumsiness or spatial insecurities.
- Get a Speech evaluation. He may have speech delays (not just articulation. Also, see communication disorders above), but what they call “Pragmatic Language” delays. It involves his ability to use language in social situations and read non-verbal communication. A Speech Therapist may also help you learn to use PECS with him. Many children with autism are visual thinkers. You can’t just tell them something, you have to show it to them. PECS uses pictures instead of words. It works for both verbal and non-verbal kids. For us, we use it as a schedule to show Finn “what’s next” (a question he asks all day.) It helps ease his anxiety, too.
All of these evaluations will help you get a better picture of his challenges, instead of focusing on a label or a diagnosis. Every kid with autism doesn’t do everything “autistic kids do.” You need to know what YOUR kid does. That will tell you everything.
Don’t call the Child Study Team right away. Wait until you are in a better place with the diagnosis. Dealing with a child study team is a whole other ball of wax. Some of them are great. Some of them are… not so great. You want to have a better understanding of what he needs before you walk in there because there’s no “menu” of services and if you don’t know to ask for it, they won’t offer it. In the meantime, follow Wrightslaw on Facebook. They also have a website, blog and books (I especially love “From Emotions to Advocacy”). They are invaluable. If I had it all to do over again, I would’ve started out knowing our rights and going by the book (Pete Wright’s book, that is). Don’t assume the School District is going to give you what he needs. Don’t assume they know the law or will follow it. Don’t assume they have your best interests at heart. This is their job, but this is your life! It’s way too personal and emotionally charged. The IEP process is almost more overwhelming than understanding the diagnosis. That’s why I’m telling you, if you can hold off on contacting them, do it. You need to focus your energy right now.
Be patient with yourself. You don’t have to learn everything in one night (and you certainly aren’t going to!) There is a lot of information out there and not every piece of it is going to be helpful! Start with the Autism Speaks 100 Days Kit (they have a “tool kit” for Aspergers/ High Functioning Autism, too). Read them at least twice. The first time, you might not know exactly what applies to your son. Give it time. Read them again. You may not understand it all at first. You don’t have to. I’ll be here to help if you need it. When you’re ready, read this blog, “Welcome to the Club,” by Diary of a Mom. I know it’s hard right now to think that anything good will come of this, but I promise you, it will. This isn’t a “club” any of us planned to be in, but I’ve made some of the greatest friends here.
It’s ok to feel overwhelmed. And scared. And sad. And incredulous. And ashamed. And guilty. And angry. You are entitled to feel. Whatever. You. Feel. You will go through all 7 stages of grieving (believe me). You will get to “Hope,” I promise. And until then, I will have hope for you.
You don’t have to do it all. You are not “behind the 8 ball!” You don’t need to make any drastic changes right now. You will figure this out and it will get better, but for now take your time! I remember getting every book I could find at the library and reading feverishly, trying to absorb everything I could, so I could “fix” Finn. Looking back, I wasn’t really reading them anyway. I would read a few pages, think “it wasn’t Finn” and cry myself to sleep. I’d wake up the next morning and repeat. There’s no quick fix anyway and right now your family needs you to be ok. Finn’s diagnosis was almost two years ago and I am still learning something every day!
Find a support group. This doesn’t have to be a traditional support group, but rather a group of friends who have been through this. Seek out other parents to lean on. Their advice is invaluable (and so is their wine!) There are a lot of support pages on Facebook, if you’re not ready to go public. Check out this, this, this, this, this and this. (These are some of my favorites because they post things that are positive and helpful to the autism community. There are plenty of “autism sucks” bloggers and Facebookers out there, but I stay away from them.)
Don’t compare him to other autistic kids you know. I promise you will NEVER find a kid who looks or acts like yours. He is unique and special and sweet all on his own. Autism is a chameleon. It blends in to each person. I’ve heard it so much it’s cliched, but so true, “when you’ve met one person with autism, you’ve met one person with autism.” Find out what your kid’s autism looks like. That’s all that matters.
Autism is beautiful. I know I sound like Pollyanna right now and you probably want to punch me in the face, but you will see it. Once you accept the diagnosis (if it is true), you will see the beauty in autism. You won’t be able to separate the diagnosis from your child. And how could he be anything but beautiful? When you think of autism right now, you are thinking of “that kid down the street who has autism” or “Rainman” or a picture of autism you read in books. Autism will become very personal to you. You will see its uniqueness. You will find its gifts. You will champion its miracles. You will find its beauty.
I am sorry for your pain. I am here for you. I will listen to you whenever you want to talk. You can ramble on for hours about him. I will listen. I am proud of you (and honored) that you reached out to me.
Whether or not he has autism doesn’t change your love for him. I know you would go to the ends of the Earth for him. He is still the same little boy he was yesterday. Nothing has changed. He is still perfect.
You are stronger than you think you are.