Mamas who are in the Grief Stage; it is okay

Why would you feel grief over autism?

Your child is alive. 

They are healthy, even happy most of the time. 

It could be so much worse they say. 

I have said those words to myself as well as had others say them to me. It does little to bring you comfort in the darkest corner of your mind.

All it really does is make you feel guilty and believe me we feel an insurmountable amount of guilt already. 

The guilt can be even worse than the grief.

I could tell you all about my grief, the pain and heartbreak I had realizing my little girl was disabled.

The way it shattered my heart and took my breath away.

The stabbing pain, the physical pain, when I would look at her and want to help her but I had no idea how to. 

That helpless feeling as a mother is the worst feeling in the world.

I see the confusion in your eyes when I tell you how sad I am. I hear the tone you use when you say it’s not that bad. I see the words plastered all over the internet, judging, minimizing and questioning our hurt. 

I am going to tell you the pain you feel as a special needs mom is real..the grief is as real as anyone else’s. 

We get the added bonus of being shamed and feeling guilty on top of our world being tipped upside down and twisted inside out. 

Yes we know our child is not sick, but they are not without pain, we are not without pain. 

Yes we have the blessing of having our children in front of us and we are grateful, but we are not without loss. 

I am not telling you this for my benefit but for the benefit of all the moms going through it.

I have walked my path and lived the sadness and trudged uphill through all the hard, at times thinking I couldn’t take one more step.

I did it though.

At times I had my daughter on my back feeling the weight of the world and other times she would pull me with her smile, her light, and that was enough to keep me pushing.. in time the weight began to lift. 

There are 5 stages of grief and we go through them all. Everyone single one of them.

First there is denial. This one has a lot of impact that catches up with us later. This is where we can not wrap our head around a diagnosis. 

We come up with every excuse in the book and even find some signs endearing. We begin to see red flags and we search for other reasons but in our heart we have a sinking feeling.  We allow others to convince us everything is okay because we want so badly for it to be true.

Our love for our child puts up a protective wall, but it will eventually come crashing down. 

Then we have anger.  We are so angry. Why did this happen to our child? It is not fair. It feels so unjust.

Things seem so much easier for every other child we see, every other parent. Our sister, our neighbor and our best friend. 

You try to be happy for others but it is so hard and it hurts so so much. 
We are mad at God, the doctor , and mostly ourselves…and for no good reason.. there is no rational thought in this stage.

Next comes the bargaining stage…taking the anger and turning ourselves into research specialists.

Google becomes your best friend and your worst enemy.

You will find “all the things” and you will start ordering and trying everything. 

You are convinced you will find that one thing that is going to fix your child. 

You are sure that if they can just learn to talk they will be fine.

Maybe it’s not autism and if it is maybe just maybe it’s mild..or it will be if you just find the one thing that will help. 

This is in conjunction with all the therapy and educational services they are already receiving.  

You beg and plead with the universe, God or whoever you think is listening to please let something work. There is a little bit of denial still here in this stage. 

Then comes the sadness. You begin to realize that this isn’t going away, it’s here to stay.

It’s a part of your life and a part of your child forever. 

It begins to sink in and you become overwhelmed with emotion.  

The whys come back. Why your perfect, beautiful child? Why are they inflicted with this?

It feels like every other child is surpassing yours and experiencing a typical childhood.

You are sitting at IEP meetings, hearing how behind your child is and all the things they will never be able to do. It is crushing. 

You lose your fight. Your dreams for your child slowly slipping away as you realize this is forever.  

You will begin to move into acceptance. You will feel a huge weight lifted off you when you move into this stage. 

You begin to see your child in a different light. 

You relish in their accomplishments and celebrate them. 

You see the light at the end of the tunnel.  

You realize that this is your life and your child’s life. You take the ups with the downs.

You become stronger. Your fight comes back.  You fight for different things now. You fight for communication instead of words, you fight for progress, you fight for joy. 

You let go of the why and move forward with the here and now. 

Mamas who are in the grief stage; it is okay.

You need to recognize your feelings to own them.

It is unhealthy to keep them bottled up. It will only lead to guilt and shame. It is your truth.

Do not let someone who has not walked a day in your shoes tell you any different.  It is perfectly natural to feel this. 

I am not going to lie, it has not always been an easy life. You will grow thick skin and you become a mama bear like no other and you will walk over glass to protect your child.

You will be their voice.  

Acceptance is not a forever stage, you go back and forth.

You will go back into sadness at different times and that is okay.

You will take a day or an hour to cry and then dust yourself off and come back.  

Although this is a hard life, it is not a sad life. You will experience more joy than you ever imagined. You will have an overwhelming sense of pride and be in awe of so many barriers your child will break.

You will find your people.  

To people outside of our world and to well meaning friends and family, the grief is real and it’s hard. 

Do not try to tell us any different. 

Please understand this does not mean we do not love our child. We love them fiercely and it is because we love them so much that we don’t want them to not have to walk such a difficult path.

But we learn to hold their hand and walk  along with them. 

Be kind and be compassionate.

And if you don’t know what to say, don’t say anything.

Written by, Kimberly McIsaac

Hi, my name is Kim. I am married with four children, one who is a young adult with non verbal autism. We live in Massachusetts and I work full time as a director of a daycare.  I have a Facebook page that follows the progress my daughter has made, while making transitions into the scary world of an adult with a disability. She has made incredible progress beginning with words coming at the age of twenty-one.  I want to spread awareness of severe autism while giving others hope as we ride this crazy autism roller coaster with all the joy and heartache that comes along with it. You can follow us at https://www.facebook.com/Autismadventureswithalyssa/

Interested in writing for Finding Cooper’s Voice? LEARN MORE

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, subscribe for exclusive videos, and subscribe to our newsletter.