A Message to the Parent of a Newly Diagnosed Child

Your child has just been diagnosed with Autism. You heard about me from a friend of a friend. Or maybe you found me on Facebook. Or you emailed me at 1 AM as you were frantically googling autism in the middle of the night.

You are so confused and scared. You feel like you’ve lost control of your life. I see you. I understand what you are feeling. I was you. I am you. You are going to look to me for hope. You are going to search through hundreds of blogs until you find the one that sounds like your child. Maybe that’s Cooper. And maybe it’s not.

I know you are in shock. Even if you knew deep down that something was different about your child you are still in shock. Hell, Cooper was and is completely nonverbal at age six and there are days where I still think he will snap out of it.

When I walked out of Cooper’s diagnosis appointment I felt every single emotion possible. We waited for seven months for that appointment. The day came. The appointment happened. We got the diagnosis. We left. I cried. Everything was immediately different yet exactly the same. I was not the same woman that walked through the front door of Fraser.

I Was An Autism Mom

I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I did during my pregnancy. I hated my body for failing this child. I felt every single emotion possible. As I am sure you do too. But they are flying at you so fast you can’t actually make out one from another. It’s a flood.

Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.

I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him this would be fine. I could outrun Autism. I knew I could. No one had to know. This is called fight or flight.And it’s the grossest feeling ever. It’s not logical.

I get it friend. You are an autism parent now too. A special needs parent. You are in a group. A group that you don’t want to be part of. And you feel more alone than ever.

So Many Emotions

I know how you feel. All these emotions are flying at you and you don’t know how to manage any of it. And to make it worse you still have this super challenging child. Then add in everything you’ve ever heard about autism from Google and your mother’s sisters friends daughter. There are buzz words like Medical Assistance, Social Workers, Case Management, Financial Aide Workers, and IEP. The list goes on.

The advice is pouring in. Random friends of friends are emailing you. Your Aunt is tagging you in an autism post on Facebook. Your mom knows a woman who has an autistic grandson. You should call her. You keep hearing early intervention is key. You feel like you need to do a million things immediately. Cut out gluten and dairy. Call the school district and the county. Get more therapy. More, more, more.

But the oddest feeling of all is how paralyzed you feel and yet the world keeps going on around you. You are different. Everything is different. But yet your child is not. They are the same. The world keeps turning.

Suddenly you feel like you are a stranger in your own life.

You went to the appointment. You got the diagnosis. You left the appointment. You told Grandma and Grandpa. You tried to answer questions. You cried. You hugged your spouse. You talked about the unknown future. You drove home. You fed your child dinner. You gave your kiddo a bath. You put him or her to bed. You hopped on Amazon and ordered five books on autism. You joined a special needs parenting group on Facebook. You got into bed. You cried some more. You thought about the day.

The Reality Sets In

You spend hours wondering if the psychologist was wrong. You immediately Google, ‘Autism Misdiagnosis’ and find a wonderful blog post about a child cured from Autism. And you think, ‘this is going to be fine. This will be fine.’ I can make this fine.

Your kiddo will have a few good days. You hate to admit that you haven’t left your house nor are you challenging them. So everything seems fine. Then your child will completely and utterly throw you for a loop. Or maybe you will see them next to a peer and the blatant differences will scream at you. This is real. This is happening. And you can’t outrun it.

You will look at your baby and see the exact same child you did pre-diagnosis. Nothing has changed. All of a sudden you hate the term Autism. You think if you hear it again you might scream.

Can you say it out loud yet? Can you say, ‘my child is autistic.’ You feel like a traitor saying it out loud. So, you whisper it. You hide it.

It took me a year to be able to say my son has autism to a group of people. I felt like I was letting him down. Or I was determining his future. And I definitely felt like I was labeling him. I could feel the sympathy and ‘I am so sorry’s’ from strangers before the word even left my mouth.

This will sound crazy to you but a day will come when you will tell someone that your child has autism and it will be a good thing. That sounds ludicrous right now. Just believe me. The day will come and you will say it and you will see understanding in a strangers eyes. And you will be thankful that you can explain to people why your child is hitting them self in the head. Or rolling on the ground screaming.

In a super weird completely messed up way that word is now your ally. But you aren’t there yet. So don’t think about that please.

If you are anything like me your first thoughts post diagnosis are ‘what now? You need a plan. A focus. The night after his diagnosis I needed to research. I needed to stay busy. I needed to fix my son.

I want to tell you that I did it all wrong. I put way too much pressure on myself and my marriage and most of all Cooper. Well, maybe not all wrong. But I was so panicked. I didn’t have the best support system and I isolated myself. Cooper’s dad would say I became a martyr.

I want you to take it slow. I want you to hug your child. I want you to cry. I want you to take some time to grieve and sit in the dark. You don’t need to look on the bright side yet. You should need to feel everything.

Here is My Advice:

1. Take Time To Grieve
   Be sad. Don’t force yourself to be happy. Don’t lie to yourself either.  You pictured your child in one way and now you know that may never happen. Do not let anyone tell you that you shouldn’t be sad. Or that it could be worse. Do not listen to any stories about people that have it worse. Do not feel guilty for being sad. You need to go through the feelings and the longer you put it off…the harder it is. Feel every feeling friend. Just sit in it for a little bit.
2. Take Time To Process
   Nothing is going to change right away. I thought that our lives would change immediately once we knew if our son was autistic. I was wrong. It took months for us to see any effects of the diagnosis.  There was no medication. No magic pill. Honestly, there was no hope given. There was a label. A diagnosis. A heavy title. And I felt every ounce of its weight. By the time we hit the car I was already on Google trying to find out how to fix this. As a result I did too much too soon and it left me feeling extra anxious. I was making phone calls and raising expectations. I wanted to do as much as possible. How does that old saying go…I was throwing stuff at the wall to see what would stick. Don’t do that. Just process.
3. Wait To Tell People
   I told way too many people about Cooper’s autism appointment. I immediately regretted that because I didn’t know what to tell them after. I was scared. And was too sad. I also had no answers. I didn’t know how to answer people’s questions. Still to this day people ask me if Cooper is going to talk. Or they ask what his future looks like. HELL IF I KNOW. I wasn’t prepared for people’s questions and they made me feel so much worse. I was too sad to help them understand autism.
4. Be Patient
   I really believed in my heart that our lives would begin to change the second we got the diagnosis. If the universe had any idea what it did to me physically and mentally just to go to the appointment they would’ve saved me right away. But life doesn’t work like that. Nothing changed. We walked in there with Cooper. We walked out with Cooper. We told close friends and family the news. That was it. We knew nothing more, nothing less. And then we waited.
5. Build Your Village
   When my son was diagnosed I felt incredibly isolated. I knew my life was different than my friends and families. I need more than the average parent and yet no one in my real life understood what I was going through. Start building your village as soon as you can.  Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out. Get a social worker. They are the gate keeper to all benefits for your child. Find amazing teachers, doctors and therapists that love your child. Speak up if it isn’t working. These people will become your life support. Lean on them.
6. Get Ready For A Fight
   I know this sounds funny. But it’s true. You are now the sole care advocate for a vulnerable child that most likely can’t communicate. You are going to fight battles that you didn’t even know were out there. You can do this. You will feel the need to defend this little human to people. Before you know it you will become an advocate. It will be scary at first. And I want to tell you a secret. The fight doesn’t get any easier as they get older. You just get stronger.
7. Never, Ever Give Up Hope
   If you don’t fight for you child, who will? You are their greatest cheerleader. You are their advocate. Their person. You speak their language. You have their best interests at heart. Always. Never, ever give up hope. My son is doing things at age seven that blow my mind. He is potty trained. He is communicating with a speech device. He is starting to venture out into our community. Hope. Keep it always.

Grief is not linear my friends. You are going to have highs and lows. And at your hardest moments, remember that the child you have now isn’t the child you will have in a few months. They will change. They will grow. They will regress. The severe parts of son’s Autism are getting more evident. His sheer size alone is a lot. I still grieve. Just when I think we are settling into a routine or have a win a new behavior will develop. Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies. I have one meltdown to every five of Coopers.

And you know what, that’s OK. Because we never stop moving forward. Some days we crawl at the pace of a snail. But we are still moving forward.

I want to tell you that you have the strength to do this. You will become stronger than you ever thought possible. Your skin will get so unbelievably thick and you will become the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.

You don’t have to fight autism. Or carry the torch against it. But you do have to fight for the best services possible for this little person that is completely and solely dependent on you. And good god friend at times you will feel isolated and alone because of this disability. But your child is still the most amazing little human. They are funny. And adorable. And the best thing you have ever done.

Seven years in and we still have hard days. But the joy outweighs the hard. I promise.

I won’t lie to you and tell you that it’s going to be easy. I won’t lie to you ever. Being a special needs parent can be hard and scary and lonely. And it’s also loving and happy and joyous.

I want you to know that you can do this. You are not alone.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.