Seeking the Diagnosis - TheRustyMom

Seeking the Diagnosis: Our Journey to ASD

A year ago, if you told me that my daughter was autistic, I wouldn’t have listened. In fact, I probably would have gotten pretty defensive. It’s the mama bear in me but a lot has changed in the last year. This is our journey to my baby’s ASD diagnosis.

 

Disclaimer: I am not a doctor and do not claim to be any sort of specialist on ASD. If you are concerned about your child, please seek professional advice.

In the beginning

When our Pediatrician suggested that my 18 month old daughter had a developmental delay and needed speech therapy, I waited. Thoughts went through my head and unsolicited but well-meant advice was given by friends and family.

“She’s only 18 months old.”

“If she’s speaking by the time she turns 2, she’s gonna be fine.” *my thought*

“Kids develop differently.”

Etc., etc., etc . . .

I tried to be strong but I was devastated. My perfect child has a delay? Impossible!

I felt angry at this doctor for throwing out terms like “delay” and “early intervention” so casually. How did she not see that my daughter was perfectly healthy? Sure, she didn’t say “mama” and “dada” or wave “bye-bye” but she hit most of her milestones on time or early. How could there possibly be a delay?

When Lady A’s 2nd birthday came around, it was like a switch had been flipped.

She learned the alphabet, numbers 1-15 and began to say the names of so many things (bird, tree, sky, etc.). She learned her colors and shapes so quickly and began to memorize scenes from movies. Maybe we had a budding actress on our hands?

My fears began to disappear as she excelled but that word, “delay” kept nagging at my subconscious.

Something didn’t feel right.

When her third birthday rolled around, she still wasn’t forming sentences on her own. She would get frustrated and scream movie lines when she couldn’t express her wants or feelings.

I know this now to be ‘delayed echolalia’ but had no idea what that was at the time.

I began to watch her. Like, REALLY watch her even more than my already overprotective self normally did.

And I began to see things.

Like how she lined her toys up by categories instead of playing with them as they were intended.

How she had a complete meltdown for 20 minutes because I began to sing a song; something, that most children enjoy.

How she made zero eye contact with anyone.

I watched her growing fascination with letters.

I heard her as she memorized books and whole movies, as she used those words to try and communicate with me.

My suspicions grew into worries.

One month after Lady A turned 3, I turned to ‘Dr. Google’ with her unusual behavior and saw article after article in the search results. They all contained the same word: Autism.

The more I read about ASD, the more signs I began to see in my daughter and the more I opened my heart to having a child on the spectrum.

The more I read about ASD, the more I opened my heart to having a child on the spectrum. #ASD Click To Tweet

I decided it was time to express my concerns with our new pediatrician.

This was such a turning point for me. I suppressed my fears and doubt.

I prayed a lot and began to turn from the denial; to accept the fact that my child was delayed and that she was still my beautiful, precious baby.

We were referred to a specialist 2 hours away and the evaluations began.

Just FYI – If you are concerned about your child being autistic and move forward with a referral, there will be evaluations. Oh, yes. There will be evaluations. Tons of them. Bring snacks (for your child) and ibuprofen (for you).  🙂

Apparently, one evaluation by one specialist isn’t enough. To receive a diagnosis of ASD (at least in our state) there has to be a consensus from several different evaluators from at least 2 different offices with follow-ups. Ours were from an independent Family Practice and the county’s School Board.

So there went our summer: the husband taking off of work, loading the kids up and traipsing around our state to different assessments. Cognitive, speech, hearing & vision, parent reports, social skills, communication . . .

You name it, we assessed it and then went back for a follow up.

And do you know what? After all of those meetings, the results were pretty much inconclusive.

Baby girl was so high-functioning in some areas, slightly delayed in others and significantly delayed in few.

The school board wasn’t ‘comfortable’ with labeling her as autistic and diagnosed her as developmentally delayed with a note to evaluate again in 3 years.

The specialist from the family practice was a little more convinced in her ASD.

She told us that a lot of schools, specifically from poorer counties (we live within one of the poorest school districts in the entire state) will intentionally refrain from diagnosing a child as “autistic” because they can’t afford to bring in more resources for those children. So they label them as ‘developmentally delayed’.

Makes sense to me, especially taking these schools ‘round here into consideration.

Sorry, not sorry.

I trusted the opinions of this specialist quite a bit more than the school board’s and this specialist diagnosed my daughter with Autism Spectrum Disorder.

Not gonna lie . . . I cried the entire 2-hour drive home, devastated for my first-born. How would this affect her future? I was hurting for my baby.

At this time, I didn’t know ANYTHING about a developmental disorder apart from what I’d seen in films like “Temple Grandin” and “Riding the Bus with My Sister.” Claire Danes and Rosie didn’t seem anything like my little girl. I was clueless.

I wanted my daughter to be treated the same and was terrified for her to be seen as ‘different’.

Kids and adults can be so cruel, especially about things that they don’t understand.

I wanted my girl to be HAPPY and it turned out that she is.

She’s a happy, wonderful 3 year old who has no idea about disorders, cruelty or pressure to “fit in.”

She’s amazing in so many special ways. She is smart, beautiful and creative. She’s the purest source of joy in my life, along with her baby brother. My greatest blessings.

Once I put my worries and feelings aside, I began to watch my daughter with new eyes.

I never thought I could love her more but I do. I never thought I could be this strong but I am.

I never thought I could love her more but I do. I never thought I could be this strong but I am.… Click To Tweet

So full of life and strength. . . she is the source of my strength and has been for her entire life.

I have learned so much about this disorder in the month since receiving her diagnosis.  I’m learning more every day and we have such a long road ahead of us but I’m ready.

I’m ready to be her voice, ready to be her constant.

I want to be her light just as she is mine.

She will not be defined by this diagnosis. It is a part of her but not ALL of her.

Autism Diagnosis - The Rusty Mom

Now that I’ve accepted it, I’m learning that it’s not really a “bad” thing. Sure, it has it’s moments but a lot of the quirky traits that put her on the spectrum make her the beautiful, unique little girl that she is.

 

Sometimes, I look at her and become overwhelmed with love. Cheesy? Maybe, but it’s the absolute truth. The Lord chose me, ME to mother this amazing child.

Whether delayed, disabled, typical, or any other description . . . children are the Lord’s greatest gift.

So we’ve received the diagnosis.

We’re one step closer to getting her all of the help she needs and then some.

You know, it’s actually a relief to finally have a name for what she’s dealing with.

There may be trials ahead but I know there are so many more beautiful experiences to share with my baby girl.

I’m ready.

 

Are you an autism parent? Perhaps you haven’t received a diagnosis but have that ‘nagging feeling’. Maybe your child has just been diagnosed or you are a ‘seasoned’ autism mom or dad. Please share any thoughts, feelings, experiences or advice that you may have! Every child and story is different. This is just ours.

I would love to hear from you!

 

If you’ve made it this far (hey, when is a diagnosis ever a short story? Seriously, apologies for the novel), thank you so much for visiting The Rusty Mom! I’m so glad you’re here!

 

God Bless!

Danya

XOXO

 

(Visited 21 times, 1 visits today)

TheRustyMom

Hi, there! I’m Danya, a 20-something mother of 2. We all know that everything in marriage and parenthood isn’t perfect. Sometimes, we’re all a little rusty. I’m so glad you’re here! XOXO

6 opinions on “Seeking the Diagnosis: Our Journey to ASD”

  1. An intriguing discussion is worth comment. I believe that you should publish more on this subject, it might not be a taboo matter but typically folks don’t speak about such issues. To the next! Cheers!!|

  2. Thank you for sharing your story. There are lots of families that go through the roller coaster of worrying, questioning and maybe finally getting a diagnosis. We were given our son’s genetic diagnosis hours after he was born and it was a tremendous blow.

Share your thoughts!