Welcome to Autism Island

Finding Cooper's Voice
Featured Story from Finding Cooper’s Voice 1/21/19

When we walked out of the doctor’s office that morning, it felt like we had walked off of a plane at an unexpected layover on foreign soil.

The world looked differed here.

The air felt heavy and my husband seemed fine…like he knew where we were. Maybe because he’s been here before with his son. But this time, there was no connecting flight back to our old lives.

It feels like we just stayed here and started our new lives, so welcome to Autism Island and wherever your journey may lead you.

In my time here, I’ve learned that no two autism journeys are the same—even when you have two. But the first day you receive that official diagnoses, you may go through denial.

You may research and convince yourself that none of those descriptions relate to your child. That you don’t belong here. That they can’t possibly have this. That what they do is so common.

Sometimes. Maybe.

You forget exactly what traits stood out the most and you doubt everything.

This is common.

You may continue to remain in disbelief when you convince yourself that this can be cured, especially when you dissect everything that has ever happened to you and your child from pregnancy to food.

You may even convince yourself that an organic diet or regiment of vitamins will cure it because some blog claims this happened.

You may even visit a psychic or witch doctor and spend hundreds of dollars on conspiracy remedies.

You’ll probably find yourself researching all of the ways to help your child be that one in a million falsely diagnosed kid who gets cured by a scalp massage and a heavy metal detox. But most likely, they won’t be cured and you will be left with a lot less money. And trust me, you’re going to have less money because autism is expensive.

It’s not part of your financial plan nor was it part of anyone’s financial plan.

Autism impacts your entire life in different ways depending on your individual child. It can range from what therapies they need, specialists, child care and your ability to work. But you’re going to figure it out.

For me, it felt like having to start over someplace new and from scratch.

It may take months to accept the diagnoses. Months to grieve the child you wanted and even years to accept the child you have. But once you accept the diagnoses, the most important thing is to keep moving forward.

One of the most devastating parts of this journey is the isolation.

I have written a lot about it on my blog because it is real. I think some of us expect empathy and support from family and friends but what surprised me the most was how opposite that is.

For some of us, we have to start our journey alone.

I hope your story is different. But if it is not, you are not alone.

My advice is to get on board and leave behind anyone who does not support your child, their diagnoses or the changes you need to make in your life to benefit your child.

It could be anyone from parents to siblings, therapists, and friends that try to keep you living in denial. These people will become toxic to your child and your sanity.

Not every family is going to come around and embrace your child like the fictional Braverman’s on The Parenthood.

Chances are, you have seen more than one specialist that has evaluated your child and the people in your life are most likely not medical doctors that focus in developmental pediatrics to be disagreeing with a diagnosis or making you feel guilty about it. This is the hardest part.

It is the most disappointing part because sometimes it is people you least expect who react unexpectedly.

I wish I had known this early on because maybe I would have been emotionally prepared for it (if that’s even possible). But that’s okay.

You are going to find your people. There are many of us out here who understand.

People who won’t judge you.

Once you have gone through the stages of accepting your child’s diagnoses, you can’t afford to go backward. You can’t let people fill you with doubt because you need to be strong. I wish I could say that Autism comes with a welcome wagon but it comes with a fight.

Fighting for services, fighting for appropriate education, and basically fighting for your child to be included in everyday parts of life and other things that typical families don’t have to fight for.

As you navigate your child’s needs and decide on therapy, education, and how you are going to parent, consider your child’s happiness and that success might not mean changing them to be like their peers.

Modifying behaviors and socialization may be crucial to their success but they are going to be different. This we cannot change.

Your child is their own person. Embrace their strengths.

Don’t compare them to peers or siblings, even if they have autism too. Every child is their own person and will advance at their own rate. Sometimes you will need to visit your child in their world instead of forcing them into ours.

Even if it is not your thing, join a support group and connect with other parents who are accepting and understand your journey even if it is an online community. Other parents are going to keep you strong and lift you back up into the world and off of this island.

When you get back, you will be ready to advocate for your child and their inclusion in the world–whatever that may mean for your individual family.

Whatever you do, try not to look back at your old life and what could have been. Try not to worry what currently is will always be.

Look into the future and strive for what can be and don’t give up on your child, ever.

They will surprise you and bring you joy, even though it wasn’t in the way you expected.


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