The Questionnaires Still Sting

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My son Jayden has settled into school and he is doing amazing. I am still pinching myself every day when I drop him off. 

We are now starting to incorporate the other therapies Jayden needs back into his new schedule. 

It is official. I have received my mountain of paperwork. 

All I have to say is, WOW! 

Jayden is eight and some of the questionnaires are still completely brutal to complete. 

I really thought at this point the questions would be less cumbersome or I would be used to the daunting gut-wrenching questions they bring to the forefront of my mind.

But, the truth is I am not. Every question has a way to sting.

It is not only heartbreaking to answer no to every skill your child cannot do, but the questionnaires themselves are also incredibly long. 

They contain questions like “Is your child able to write journal entries up to ten sentences?”

I am still potty training and teaching him to write his name and these questions just remind me how far we truly are behind.

I have no idea what typical eight-year-olds are like.

I am usually left in tears, and require breaks to complete the questions.

I am thankful most places allow you to fill them out prior to your appointment or meeting. I think this is due to the lengthy amount of the questions being asked, but whatever the reason I am and thankful because I need that extra bit time.

I need the extra time to face the hard reality of the skills my son does not have yet.

I need that extra time to mourn the traditional family life I pictured having. 

I need that extra time to sit back and accept where we are today.

I need that extra time to reflect on how far we have come.

I need that time to reflect on the skills he does have.

I need that extra time to make sure I do not miss anything because I am his voice, and that is the most important job I have ever had. 

No pressure right…

I thought by now the questions about every aspect of my pregnancy would go away but, those questions are still being asked and much more often then I want to discuss them.

They want to know it all, which of course leaves me racking my brain to figure out what I could have done differently. I know today that I am not the cause of Jayden’s Autism. 

But those questions have a way to get me every time. 

The last question was, does your child have a friend that he considers his best friend? Jaxon has such a sweet bond with his best friend Kai, they really melt my heart. 

But, I had to answer no for Jayden. 

Other than his dad and close family members, he really does not have any friends and he has no interest in peers. 

He will interact and sometimes play with his brother for moments not minutes. 

That is the reality we live and spend countless hours trying to meet him in his world and have him join ours. 

We work every day to bring him out of his world and bring him out into the community and engage him in “our world” but it is so hard for him and every day brings its own set of challenges.

No matter how hard the questions are we as Autism parents push through.

We answer them for our sweet kids.

We are their advocates. 

It is the most important badges we wear. 

No, the questionnaires do not get easier.

Somedays we are stronger.

Somedays we need that extra day.

Written by, Kirby Morgan

My name is Kirby and I am the mom to two amazing little boys Jayden who is eight, Jaxon who is four and I have a have one bonus daughter Kayla who is seventeen from my husband’s previous marriage. My son Jayden was diagnosed with Autism at two years and four months old. I was pregnant with Jaxon when I received Jayden’s diagnosis and Jaxon was born four months after Jayden’s diagnosis. You can follow our journey at Beyond Autism Jayden’s Journey.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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