How to Accept your Child’s Diagnosis: Even When it Hurts

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By Elizabeth Lewis

 

What is normal, anyway?

Based on conversations I have had with other moms, we all have moments where we wonder if we have done something wrong. Have the Gods cursed us? Are we bad mothers?

When my son screams at me in public or verbally threatens his kindergarten teacher I want to sink into the floor. I envy the moms whose children come out of school beaming, holding up their prizes for an entire day of good behavior.

Not that my son never gets a prize, he does, but every single day I am sweating, waiting for the phone call.

I write all the time about how abnormal I am. I have no explanation for why I want my son to be something I am not. But I am starting to think my feelings are not uncommon.

My son has Asperger’s Syndrome and ADHD. Life in my house can be a little…..errrr challenging.

It is totally normal and acceptable to have mixed feelings about your child’s diagnosis.

 

HOW TO ACCEPT YOUR CHILD’S DIAGNOSIS

ENJOY YOUR CHILD

 

In the past, my son has had some emotional regulation issues. I have run around town to play therapists and occupational therapists and one cognitive behavioral therapist. Each time we went through a bad spell, we came out of it and I thought that I had it under control.

In my own way, I was arrogant for believing that having lived through ADHD I could handle it in my own son. As it turns out he does have ADHD. But he also has Asperger’s Syndrome, a type of high functioning autism that does not affect speech.

E likes the same things all 6 year-olds like. But he cannot transition at all. Not from one activity to another, and not from one environment to another. And if his daily schedule is altered in any way he is highly likely to have a meltdown.

When I say meltdown,  that means anything from crying and covering his ears, to telling his teacher that he will, “Hulk smash the building.”  He is that unpredictable.

E is also incredibly funny. Within the last week I have discussed all of the following:

  • Where “meat” comes from = dead animals
  • Black holes in space
  • The fact that my son swears he is never moving out of my house
  • Meditation, mindfulness….and, “why does that lady keep talking?”

 

Here is a link to more information on Asperger’s.

When you get a diagnosis for your child you will go through a process. Here are some ideas to get you through the tough times.

TAKE PERSONAL TIME

 

I have not been alone in 6 years. Literally.  My son was attached to me like an appendage for most of his life.

If there is one piece of advice I can give it is to take time for yourself.

This year we didn’t have a dog-sitter for Easter so I stayed by myself in my house over the holiday weekend. It was glorious. No interruptions. Just quiet time.

And I was fine. I can exist separate from my child with Asperger’s Syndrome and my husband.

My life is so consumed with taking care of others that I often forget how to take care of myself. Now I know that I can. I can be alone with my thoughts and it is ok.

GRIEVE

 

For at least 2 years I suspected my son has some kind of sensory processing or pragmatic disorder. Nobody really believed me, but I always knew. A mom just knows.

To date, I have yet to cry over my son’s diagnosis. Maybe because I spent so much time crying before?

Having an answer is somewhat comforting. With the diagnosis, I can make plans. I can enroll him in social skills classes, and schedule occupational therapy.

There is a forward motion to what I am doing.

But there is sadness. Will he ever be the boy I KNOW he could be? Will he make friends?

Let yourself cry if that is what you need. Hopefully, I will get there. Right now I feel like I don’t even have time to feel sorry for myself.

I have cried enough for all of us.

VISION FOR THE FUTURE

 

Like every other parent, I want the very best for my child. I want him to achieve… everything.

I have this vision of a handsome young man traveling abroad his junior year of high school. The same young man goes off to college and leaves me. I can literally feel the potential in my son.

I can feel it, but my son is too young to see the world through my crystal ball.

We have had issues at every single child care provider we have tried. Daycare directors have told me my child is “unmanageable.” There have been countless notes home from preschool teachers.

I have cried for days. I have cried rivers over my son. Every meltdown, every incident report chips away at my “vision” of who my son is.

But this is the thing – I know that he is more than his behavior.

It is my expectations that are being shot down. My hopes and dreams.

It is ok to grieve the death of your own expectations. Always keep the end goal in mind.

MAKE THE TOUGH DECISIONS

 

I live in one of the best public school districts in the country. I have shared with them my son’s recent diagnosis. We are working on a 504 plan.

It’s complicated because my son has an above-average IQ, but marked social skills deficits.

I am fearful of the labels that are often assigned in public schools. The labels, though necessary, tend to be life-long. I do not want to go to IEP meetings for my son. I do not want to get phone calls and emails from the school.

But as the mom, it is my job to make the tough decisions. Talking to teachers and administrators is part of my job. I got this. So do you.

THE FEAR IS REAL

 

I worked for a time with older students in a special education setting, I loved my time there but what I saw was not encouraging. I witnessed bright kids who were going through a tough time being thrown together with emotionally disturbed kids.

My students believed they could not and would not achieve. They had given up on school and even worse, on themselves.

In order for my son to be successful in any school he is going to need support. Private schools are sometimes unable to offer the types of supports that a kid like mine needs. I would like to think that I can provide enough support outside of school that he can live up to his potential.

I am scared and I am sad. But I know I am not alone.

To all of the moms out there dealing with an Autism diagnosis; I hear you. I feel you.

It is totally normal to question everything. It is also ok to just sit and cry. Sometimes this feels like a life sentence.

Every single expectation and hope goes down the toilet when you hear the words, “autism spectrum.”

But it’s ok. Your mixed feelings are ok. A diagnosis gives you the chance to learn and grow and provide the resources your child needs.

I feel you, I hear you. And I am right there with you.

Now I want to know: How do you accept your child’s diagnosis?

 

 

About the author:  Elizabeth Lewis is a freelance writer, wife, mother, and self-appointed CEO of her home. Liz founded A Dose of Healthy Distraction, a website and a private Facebook group to provide a realistic yet positive face to living with ADHD.  She also runs the ADHD Coaching Corner, a low-cost online support and coaching group.

Contact Liz at HealthyADHD@gmail.com or liz@adoseofhealthydistraction.com

 

This article was originally published as How to Accept your Child’s Diagnosis http://adoseofhealthydistraction.com/how-to-accept-your-childs-diagnosis/

Reprinted and edited with permission from the author.

Link on Asperger’s goes to Autism Speaks.org: https://www.autismspeaks.org/what-autism/asperger-syndrome

 

“Photo courtesy of Vlado/ FreeDigitalPhoto.net”  Modified on Canva.com