How To Accept Your Child’s Diagnosis

How to accept your child's diagnosis

WTH 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’s 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 Aspergers 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

Have fun

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 Aspergers syndrome.

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 info on Aspergers

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 Aspergers 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.

How to accept your child's diagnosis

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, with no training beyond a high school diploma 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. Click To Tweet

Every meltdown, every incident report chips away at my “vision” of who my son is.

But this is the thing – I know 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.

how to accept your child's diagnosis

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?

 

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  • Leanne Ferree

    Oh my god. You’re me! My daughter is now in 1/2 day k, in the best school district in the county, and I’m losing it. And I’m in PA too.
    Please message me.

  • Liz

    Leanne – thanks for commenting! I don’t know how to message you on disqus. Can I use your email?

  • Pr3shoolM0M

    You should never call a preschool teacher a Non-educated glorified babysitter! First, do you know your teacher’s background to call them this? I’ve worked in a preschool and it’s only because there were no school jobs available. I know where I was, you could not say anything about what to do with the child but tell the parents what is going on. Maybe your teachers at that school were just as frustrated as you. No need to call them names. You SHOULD be better than that, especially when you don’t like labels.

  • Liz

    Hi Pr3schoolMOM-
    Sorry my comment was offensive to you. It’s always good when someone can point out something I have written that might be interpreted in a negative way. Thanks for that.
    As far as the preschool in question – believe it or not, here where I live preschool teachers are not required to have any type of certification or degrees in early childhood development. As long as they can pass a background check, they are in like Flynn. So unfortunately, many childcare workers are put in a position to be babysitters as they do not know how to lesson plan, or create a positive behavioral support plan. And they are paid quite poorly for their efforts. Not sure who makes the money, but it is not the preschool teachers!
    Thanks again for your comment! 🙂

    • Pr3schoolM0M

      I agree there should be more trainings to help the teachers so they can be better prepared to help children and parents. Many times I felt helpless as a teacher with ABSOLUTELY NO support from my management. Preschool/daycare teachers have always been way under paid. Expected to do a salaried teacher’s job with no training and no pay. Sorry, if I upset you too. I just always hated to be referred to as a “glorified babysitter” because I truly cared for the kids and put forth so much effort in lessons and projects for the kids in my care.

  • Liz

    Oh definitely! I think many teachers are in your boat. It’s a shame that we as a society are unwilling to pay for childcare. When you think about it we are asking these caregivers to educate/care for our most precious possession, but yet we pay them terribly and provide no support. No worries about your comment – I love feedback. Thanks again!