How To Be Okay With Not Being Okay

As I move through this journey of autism, the one discovery that has felt healing to me has been understanding that I am okay with not being okay with my son being autistic. What does that mean?

For me, I have carried pain with me that is not always present, but it lingers and is always with me.

My son is now 28 years old and has surpassed his original prognosis of a noninclusive education, no possibility of living independently, living in a group home once I am gone, and no chance of a career. At best he would be able to hold a part-time job.

Now, he has purchased his own car, pays for his gasoline, pays for his auto insurance, cell phone, saves his money, and has his own spending money. He is also working part-time at one of our local radio stations, but does have plans to go full-time in the near future. Our next step is for him to get his own living space. Maybe an apartment or small house to rent and transition into managing his own household.

Personally, I believe that he will nail it. He always has reached his own personal goals. One example of many is that it took him 4 years to pass his swimming class. After he passed he kept going and eventually earned his life guard certification. He was a lifeguard for one summer and then he decided to move on to his next goal.

Through all of these life transitions of moving towards independence, I have carried fear, guilt, and pain with me. This is how I am okay with not being okay. I don’t have all the answers of how to navigate being a mom of an autistic child. I just follow my son's lead of what challenge we are facing today. I know that we have struggled and I know we will continue to struggle through life and that’s okay.

One of my big AH-HAs has been that although I am a mother of an autistic person, that is not my only purpose. It has been one of my top priorities these past 28 years, but as I move forward I realize that I must live my life and autism is a part of it, but not all of it.

I am more than autism and so is my son Joseph. We are on this journey together with the same goals, but how we move through is very different. I am the mom, the protector, the advocate, the one who worries too much, the one who gladly supports, but also the one that must let go of micro-managing her son's life.

As Joseph himself once told me my greatest life lesson has been learning how to let go. His famous profound one liners have given me some of my greatest insight and understanding of how to manage living, observing and fighting for my son.

I now know that the only way I can be okay with not being okay is to let go. Let go of every decision in his life and let him live it. Maybe he will fall and get hurt and maybe he won’t.

I will never be happy that my son is living with autism but I can accept it. I can lean into our journey and find the beautiful teachings and lessons that we both have learned along the way.

As for my son, his journey is being the son of a mother who worries too much, a mom who holds onto things that he no longer needs help with, a man who is on his way to living his own life.

He is better than okay. I have observed him growing into a man beyond my expectations. He continues to amaze and teach me that I am his mother, not his life long life planner. He’s got this thing called life under control.

As we move through this transition of adulthood I will learn how to let go more each day. I must trust that all these years of searching, therapies, and unconditional love have given Joseph the tools he needs to navigate himself on this journey of autism. I also will continue navigating my life living as a mom of an autistic child, and living my own life.

Being a mother has been my greatest honor. I will continue being a mother that loves unconditionally. I will always show up for both of my sons whether they need me or not. I am a constant in their lives.

Just as Joseph is transitioning into adulthood I am transitioning into being a mother of an adult living with autism. I am learning how to let go and place focus on my next steps in my life.

Letting go, accepting, and being grateful for this beautiful life has made me okay with not being okay.

No matter where you are in your journey—whether you are starting out, in the middle, or in the later part like mine—remember, you can be okay with not being okay. It’s about allowing yourself to be exactly where you are, and you keep pressing forward. Isn’t that a relief? It sure is for me.

If you are struggling with your own personal pain, here is what I want you to know:

• You are okay.

• You are still a person with hopes and dreams. So dream.

• You are more than a mom of an autistic child and your child is more than autism.

• Find the lessons that are being offered to you on this autism journey.

• Let Go!

I hope this has given you some peace if only for today.

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