|This is a hastily snapped cellphone picture of my house this morning. It does little to capture the beauty that was the sunrise this morning. Please read to find about why this sunrise meant the world to me.|
In his famous article, "Don't Mourn For Us", autistic adult Jim Sinclair explained the grieving process that parents go through after an autism diagnosis like this, "Most of the grieving parents do is over the non-occurrence of the expected relationship with the expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives---but it has nothing to do with autism....It isn't about autism, it's about shattered expectations."
This blog is a very long one, but stay with me to the end.
I promise it's worth it.
It’s 5 am and I just woke with a start to loud, booming thunder outside. My mind is racing anyway, so I’ve decided to sit down and try to put into words what has been on my mind.
Ben is starting kindergarten in a week. I started at a new school this week. So many changes have happened this year, and one thing is for certain.
I am not the same person that I was this time a year before. But let me back up to the beginning.
This week was Open House week. Meet the teacher week. Since I work during Open House night, and I’m fortunate enough to be a teacher, I found a time to meet with Ben’s teacher the day before the actual Open House. We ended up talking for over an hour about Ben’s strengths and his unique needs. We brainstormed potential challenges that might arise in the classroom and interventions that have worked for him in the past. I wanted to make sure that she knew that, even though we are professional colleagues, she can feel free to be real and honest with me about what’s happening with him. I want kindergarten to be a great experience for him, her, and for the other students in the class as well. But I do know the reality. There will most likely be challenges along the way.
Then Ben’s teacher and I switched gears and spoke as two colleagues for a moment. We got to talking about how hard it is to have that conversation with parents sometimes. Gently telling a parent that their kid has some differences. Gently suggesting that their child may need extra supports and services. This is often so hard for parents to hear. I shared with her something that I’ve shared with many other people, and now I’m going to share with you.
I believe that after a parent finds out that their child has a disability, they go through five stages.
Someone once told me that we all must go through these five stages for pretty much any event in our lives that can potentially cause us pain, whether it is losing a job or divorcing a spouse or finding out your child has a disability or a unique health condition.
Now, let me start by saying I am in no means suggesting that a child having a disability is as life altering as the death of a loved one, or even having a loved one go through the process of dealing with a disease such as cancer. I want to make it very clear that I do not view Ben’s autism as a tragedy or a devastation to our life. I don’t even view it as a disease, but that’s a topic for another blog.
In fact, anyone who has read my blog knows that I believe that Ben has many unique strengths and gifts because of his autism.
But, how I feel now is very different from how I felt a year ago.
We all must pass through the stages.
There is no skipping steps along the way.
I believe anyone facing a major life challenge goes through these stages leading towards acceptance.
We all work through the stages at different rates.
For some, it may take a few months to pass through all of the steps.
For some (like me), it may take a year. To read more that first year for me, click here
For some, after years and years, they are still somewhere in the process.
And so, with that said, I give you the five stages on the journey to acceptance, as seen through the lens of my own personal experience. I do not pretend to know how these stages felt for you or anyone else, even my own husband. I can only speak for myself.
Stage 1: Denial
“No, they’ve got it wrong. Not my baby.”
That was my first reaction.
Denial comes for all of us at different times.
Maybe the denial comes after the official diagnosis.
Maybe it comes after a close friend or someone in your life mentions noticing something different about your child.
For me, I can trace the denial back to when Ben was around the age of three. If I really thought about it, I probably could go back even further.
As an educator, I’m trained to see the signs for autism, but I kept doubting what I was clearly seeing in front of my face.
I doubted my years of training because I thought I was being an over-analytical parent.
I doubted because my kid did give hugs, he was verbal, he did make eye contact (albeit fleeting), and he was very bonded with me, my husband, and close family members.
I held on to something our pediatrician once said to my husband and me offhand at Ben's one year well visit. I still remember his words as clearly as if it were yesterday. “I wouldn’t tell this to most parents, but I can tell right now that your child is not autistic.”
At three, I took him to Early Steps to have him evaluated for speech and language. He did not qualify (though he did show delays), and this put my mind at ease for a time. And the denial continued on for another year.
And so when I would see him running circles on the playground or playing off by himself, I would look at the milestone charts and convince myself that parallel play was still appropriate for his age. And the denial would continue.
For me, the denial continued after taking him through the evaluation process and receiving the official autism diagnosis. I talked to every ESE expert/friend that I knew in the school system about the best course of action I should take for my child.
“Should I allow him to have the autism label even though he probably isn’t autistic?” I would ask. “What if they were wrong over at the evaluation center? I can drop the label later if I want to, right?” I would press to clarify. They reassured me that I could.
Both my husband and I knew that Ben was a smart kid, and therefore we believed that he would outgrow being autistic.
After a lot of nighttime conversations, we decided that it was best to put the diagnosis label on his IEP for the services and support he would receive, even though we felt that the tests did not accurately measure his true abilities and intelligence (which I still stand by to this day).
And so Ben began Pre-K. Because he had done so well in a daycare setting (where I later realized, upon reflection, that he was really given free reign to do preferred activities all day, even though there were signs there too of challenges), I believed that Pre-K would be an easy transition for him. It wasn’t.
It took one very honest (and brave) colleague of mine to point out to me just exactly the extent of Ben’s challenges. After finally taking a long, honest look I finally realized, for the first time, that my baby really and truly was autistic. And then, I was snapped out of the denial stage right into….
Stage 2: Anger
Yes, I got mad.
I am not by nature an angry person.
It takes a lot to get me riled up.
So, when I got angry, I began searching for a cause of my anger. The cause of his autism.
I started reading every book I could get my hands on about autism. I searched the internet for answers. I immersed myself in a crash-course study, read lots of autism blogs, and sought the expertise of those who had experience with autism. I think I earned my honorary PhD in autism studies during this stage.
When you are in the anger stage, you want to know what did this to your baby.
You want to find the cause so that you can wrap your arms around something to be angry at. You need something tangible. You need to be able to point and say, “That is what did this to my child.”
I believe that many, many parents of autistic children (and probably a fair few parents of autistic adults) are stuck in the anger phase.
They spend way too much time and energy searching for the reason behind why their child is autistic.
There are those who believe that vaccines cause autism. And while there is a ton of scientific evidence that say this is simply not true, many parents want to believe that it’s the vaccines fault.
Then the vaccine can be the Big Bad Wolf.
Then, you don’t have to face your darkest fear
The fear you never allow yourself to think.
That it was you.
That you passed this on to your kid.
That you are the reason that your kid’s life is going to have an extra layer of challenge.
It is so much easier to turn your anger outwards.
Some people turn their anger on the teachers, therapists, and support people in the child’s life.
They ask, “Why isn’t my child getting results fast enough?”
Or, they get angry at the system itself. They think, “It took him a year to get diagnosed. Insurance is a hassle. If I only had only caught his autism during that magic window, then it all would have been different.”
And, while all of this anger is often very justified, the anger in itself does not help your child. And while some of these battles must be fought, make sure they are battles that will ultimately help you towards the end result of helping your child.
After lots and lots of study, I learned something about the autism community. Sadly, the autism community is deeply divided. On one side of the divide are those looking for the cause of autism. There are parents spending countless hours trying to find the answer for what may have caused their child to become autistic.
At one point, that was me, too.
But then I realized something.
It doesn’t matter what caused Ben to be autistic. Whether vaccines did it or whether Nick or I passed the gene on to him, he is autistic now, so we’ve got to face that fact and move forward, which led me to the next stage…
Stage 3: Bargaining
And then there comes a time when you believe autism can be cured.
If only you do this one thing, then he will be healed of his autism.
There was a period of time when I looked for a cure.
I am so ashamed to admit this, but at one point even I read Jenny McCarthy’s book. I was that desperate.
I believe so many parents are desperate to help their child to be okay, that their usual common sense goes right out the window.
You may feel as if you don’t know what to do to fix the challenges that your child is facing and the turmoil in your home. You may feel as if no one around you understands. You may not know anyone who is going through what you are going through, who can be a support to you. So you turn to the Internet for answers.
If you are at the stage where you are looking to find a cure, I have to say this to you.
Be careful. Be so careful.
Watch out for MMS, the miracle formula that is comprised of a solution that amounts to bleach (yes, actual bleach) and water. There are people out there feeding this to their children like a health tonic. There are people out their bathing their children in this solution. Well intended parents, I am sure, but there are children dying because of this poison. There’s a technique called chelation, which essentially leeches toxins out of the body. People do it to try to get the mercury out of their children, the poison from vaccines that they believe caused their child’s autism. Children have died during chelation treatments.
Of course, there are wonderful therapies out there that can help your child improve.
Do those things.
Try lots of different things if one thing doesn't work.
Find what works for your child.
Never stop seeking ways to help make your child’s life better.
Because, I’ve learned, there are many autistic children and adults who are right now leading fulfilling and productive lives.
And (gasp) many autistic children and adults who are living more productive lives than many of us neurotypicals (non-autistic individuals). If you want to meet some, check out Brooke at Diary of a Mom or Conner at Conquer with Conner. Google them or find them on Facebook. These children and adults are doing amazing things because of their autism, not in spite of it.
But again, if you are looking for a cure, be so very careful.
There are those that will promise you a miracle.
They will tell you that if you only do this “scientifically proven” approach, your child will be healed of his autism. After all, they will tell you, here are all of the success stories.
When you hear or read someone saying these things to you, it is a huge red flag waving in the wind because….there is no cure for autism.
Autism is a part of the wiring in a person’s brain. It cannot be altered any more than your eye color could be permanently altered. Even though you can put in contact lenses to change your eyes from brown to blue, your eyes still remain brown underneath.
And so it is with autism. Through therapy and supports, your child can learn do navigate through this world that is geared for neurotypicals. He can learn to do it so well that he may even appear to the outsider to be “cured”, but inside he will always be autistic.
Once I realized that Ben’s autism was not going to be cured, and that it was part of his internal makeup, I slid quietly and unassumingly into the next phase…
Stage 4: Depression
You may enter depression after spending many, many hours of waiting for your child to finish occupational therapy or speech therapy or ABA or whatever program you are using.
It may come after spending more money than you care to think about on services and supports. After lots of time has passed with little to no progress or change in your child’s behavior.
At this stage you are finally coming to terms with the fact that…this is forever.
And, as much as you try to keep positive and upbeat, reality sinks in.
You are probably losing sleep at night, either because your child doesn’t sleep through the night, or because you’re up thinking about what to do to help make it through the day (or both).
And then depression starts knocking on the door.
If you are at this stage, I want you to remember this.
Everyone gets sad from time to time.
We all get a little down.
When you feel yourself getting that way, reach out to support networks. Seek comfort in the company of friends and family. Search for respite services in your community.
But, if these feelings start consuming your life, please, seek professional help. It is not a weakness to admit you need help. It is not a moral failing. You can’t help your baby unless you help yourself first.
I’ve flown on enough airplanes with Ben to have the flight attendant’s instructions forever etched in my brain, “Put the oxygen mask on yourself first, then the child.” First take care of you.
Take time for yourself, for your activities and interests. Don’t let yourself go. My mom is the one who reminds me of this often, because I’m guilty of putting myself last. Luckily, I never allowed depression to really take hold of me. I had my sad moments (still do) from time to time, but in the end, I always remind myself of this, “I’m worth it, Nick is worth it, and Ben is worth it. All of it.”
And hopefully, if you tell yourself this often enough, you’ll begin your journey towards…
Stage 5: Acceptance
It will get easier over time.
Some days are hard, some days feel impossible, but then there may not even be days, but just moments, moments of sheer joy and bliss, when you see that thing that makes your child so uniquely wonderful that just takes your breath away.
I try to fill this blog with those moments so I can come back later and remind myself of them, to keep me strong when I need to hold onto them the most.
I wish that everyone could reach the acceptance stage.
Sadly, too many hang on to their feelings of anger and sadness.
They hang on to their vision of the child they believed they would have, rather than the child that they do have.
You’ll know you’ve made it to acceptance when you start looking at things from the perspective of your child.
When you think about how all this big, loud, confusing, and often scary world is impacting him. When you stop to consider first what is like to walk in his shoes every single day.
And, when you take the time to do this, then you’ll be so proud and amazed at all your child can do in spite of all the obstacles the world puts in front of him.
You’ll want to be his ambassador to the world, to teach the world about him and others like him, so that person by person, those others will change, so that eventually society can change and see your child the way you see him, for the unique and wonderful person he is.
Acceptance is letting go of that picture that you held in your mind of what your child was going to become. Of the person you thought he was destined to be.
Because, believe me, once you let go of your preconceived ideas of what your child should and should not become, then you allow your child to develop into the person that he or she is meant to become.
And then, when you truly embrace the unique gifts and talents that your child brings to this world, a whole new world of amazing possibilities that you never could have imagined opens up before you.
And it’s better…so much better…than you could have ever hoped, imagined, or dreamed.
Your child may not be the child you expected him or her to be, but he is a unique gift to this world, with his own unique strengths and talents to share.
And, with the right people and supports in place to help him to be his best self, you can unlock these hidden gifts and let the beauty shine through.
And then you’ll discover something that’s the most amazing part of all.
It wasn’t your kid who needed to change the most, really.
The one who needed to change all along was you.
And then once you change, then you can help others to change.
And that’s when you know you are on the way.
You’ll seek out other autistic adults, because you will know that they were once autistic children, and they know what it feels like to go through what your kid is going through. You’ll learn that they are the true experts, because they are living it right now. If you’re lucky, you will count them as your friends.
You’ll become part of a whole new community, new circles of people in your life who will support you and lift you up when times are difficult.
Most importantly, you’ll find that inner peace within you.
Not to say that you spend all of your days in a serene, zen state. I wish. However, even amidst the chaos that is life, you will feel this settled feeling inside knowing that, even though things may be falling apart all around you, you are on the right path, because even though you may not make all the “right” decisions, you are doing what’s best for your child in the long run.
You’ll feel a huge sense of pride in the fact that you are now part of an ever-growing movement, much like the civil rights movement in the 1960s, that is literally changing society as we speak. That’s when you become an advocate
You may not advocate by marching for the autism cause. You may not wave a banner, network with politicians, or even write a blog. If you like doing those things, I encourage you to, but I want you to understand it’s not a necessary ingredient to being an advocate.
To advocate for autism acceptance is to treat your child with dignity and respect, even in the midst of his darkest moments. This will speak volumes to all watching you, first and foremost your child.
Every time you interact with the general public, whether at a restaurant or the grocery store, and people around you watch how you handle a moment when your child is having a hard time, you are teaching others how to model the practices of autism acceptance. When you explain to a family member, a friend, or even a complete stranger what autism is…what it truly is…and how it’s okay…, you’re modeling acceptance.
No matter where you are on your stages in this process, I wish you well.
You may not believe everything I have to say, but consider this.
I wouldn’t have believed these words a year ago either.
We all have to work through the stages.
Remember, you must pass through them all.
There is no skipping over one.
The amount of time it takes to work through each one will be different for each of us.
But remember, you are not alone.
Find your community.
Find your tribe.
The internet is a wonderful place for community, but you need one in the real world also.
And, finally, never stop looking to find your peace. Your child is worth it. Your family is worth it. You are worth it.
All My Love,
After writing my very lengthy message above, I got dressed for school and headed out the door to work.
As I opened the garage door, I paused, realizing that the storm that was raging during the time I was writing this post had finally stopped.
I paused before getting into my car because I was struck by the unique beauty of the sky.
The contrasting darkness of the clouds that still loomed close by caused the sunrise to stand out beautifully in sharp contrast. The most radiant colors of orange, yellow, and red streamed so brightly from above that they almost hurt to look at in an almost unearthly glow.
And there, above my house, was a rainbow.
And then, in that moment, I felt something.
It felt like God tapping me on the shoulder and saying, “Look up. Look at this rainbow I sent you. Even in the midst of the darkness around you, there is beauty here. Even though the darkness is very near, in the center, there is peace. There is calm. And you are going to be fine. Ben is going to be fine. Everything is going to be fine.”
And then, for the first time in a very long time, I really and truly allowed myself to cry cleansing tears of pure amazement and joy.