Our Autism Diagnosis Story

Our Autism Diagnosis Story

Have you ever had a day that dawned bright and cheerful and seemed like nothing could ever go wrong?  I have.  Many times.  The sun was shining, the birds were singing and I realized I was just in love with this life I was living.

I am so blessed to have children I like as well as love and a husband who loves me enough to not complain when I move the furniture around.  (Even when it happens almost every time I sweep behind the sofa.)  I have more good days than bad and try to count my blessings each and every day.

I vividly remember a day like this when my oldest son, Spencer, was 2 1/2 and my daughter Samantha was about 4 months old. I was reveling in the fact that we had moved on from the sleepless nights and her little personality was shining through with drooling smiles and laughter.  We had been on a walk to enjoy the Louisiana weather before it got too hot to step a toe outside and had cleaned the house because we were expecting company.

The initial evaluation

A representative from the school district was coming to the house to evaluate Sammie to make sure her growth and development were on track.  When she found out Sammie had an older brother she offered to evaluate him as well since he was under age 3.

I’m sure it’s not just me, but I thought my kid was brilliant! He knew his alphabet, shapes, all of his colors- he would even put things naturally in rainbow order! He loved counting and numbers, playing school, and was obsessed with Blues Clues.

Enter the school representative-

She looked at Samantha first and deemed her absolutely perfect.

She was right on track development wise both physically and socially and the woman just went goo goo over her baby play skills, her smile and her ability to roll around to get to toys and look adorable.

We were off to an excellent start.  Yes, I know my kids are wonderful.  Thank you very much.

Spencer’s turn to be evaluated

I proudly showed him off- all of his skills- Obviously I can’t remember exactly what I said 14 years ago- I can barely remember what I ate for lunch yesterday- but I’m sure it was something like this:

“Look how great he is at his numbers!”

“It’s pretty amazing that he can line crayons up in rainbow order isn’t it?  I didn’t know rainbow order until I learned ROYGBIV in middle school!”

“He knows ALL of the Blues Clues characters and can memorize full episodes lickety split!”

“He even knows his shapes- and not just the normal ones- the weird ones a lot of adults struggle with.”

“He is so good at balance- look how quickly he can climb and how agile he is!  He’s like a cat!”

The lady played with Spencer for a long time, taking notes and interacting with him in great ways.  I was convinced she was as impressed as I was.

When the eval was over we set Spencer up with his favorite Blues Clues episode and she gave me her thoughts about his development.  It was not a glowing report to say the least.

She went about listing off all of the things that were “wrong”  with him.  (her words)

  • He didn’t have good social interaction
  • He was too focused on topics he loved and refused to play with toys she suggested
  • He didn’t have good eye contact
  • He wasn’t interacting with the baby except when prompted
  • His language was below age level
  • He didn’t comment back and forth about books or point at pictures
  • His skills I was so proud to show off- like the rainbow order thing (still amazes me to this day) or the fact that he knew what a trapezoid was- actually went against him.
  • The fact that he loved to organize his toys was a bad thing- not a really awesome, I’ve got it so good that my kid isn’t a complete slob- thing.
  • He was too obsessed with Blues Clues and his quick memory was a sign that his brain worked differently than “normal”. (again her words, not mine)

I’m sure there was more- I wasn’t exactly taking notes.  It was more like I was sitting there with my jaw hanging open almost in tears because she was picking apart my kid.

I finally had enough-

Before she could even get to the recommendation to help with this laundry list of faults she found in my perfect little boy- I literally kicked her out of my house.

People who know me well wouldn’t recognize the person I became in that moment.  I typically have a pretty calm nature and hide away from conflict with strangers at all cost.

That afternoon I was the vision of a protective mama bear and her cub.

I didn’t yell or scream (I really really wanted to though).

I remember asking her who she thought she was that she could come in and compare my children this way.  She gave such a wonderful evaluation for Samantha and had NOTHING good to say about Spencer.

That type of “help” was not needed in our home.  I’m pretty sure the words- Don’t bother coming back- were spoken and probably not in a very kind tone of voice.

To my absolute humiliation, I was in tears by the time she could pack up her stuff and leave.  I’ve always hated the way my tear ducts are directly connected to my anger.  It sends the wrong message!  I was not sad– I’m was so mad I could spit, but all I seemed able to do was cry.  Darn it.

That is not the strong image I wanted to portray in that moment. 

After she left I hugged my babies close and wept.  I cried for the way this woman had judged my child, my home, my family.  She didn’t even know us.  She spent about an hour with my children and I was devastated by the result.

 

autism parenting

But then we started having concerns

As you can probably imagine I had major trust issues after this incident.  Looking back I know the representative was just doing her job and probably was doing the best she could with the limited resources we all had about autism at that time.  It made me hesitant to talk about Spencer’s development with anyone though.

Shortly after the home visit, I started noticing some concerning things about Spencer’s development.

  • He fell asleep in the nursery at church each week.
  • He covered his ears a lot
  • We tried to get him in a once a week mother’s day out and it did not go well.  They said he wasn’t a good fit for their program.  He just cried the whole time and they couldn’t get him to interact with the other kids.
  • He wasn’t progressing in his language
  • He didn’t do well with big groups of kids his age or younger
  • He didn’t seem to be able to build on that foundation knowledge of his numbers, letters, shapes, colors.

Most worrisome though was-

He stopped responding to his name and he would bump into people like they were a table or chair in his way.

I didn’t know what to do about the other things on my worry list, but I figured there may be an issue with his hearing so I made an appointment with an audiologist.  He wasn’t hearing me say his name and his balance issues all of a sudden might be related to that too.

I was anxious for a diagnosis so we could start helping him progress again, but he passed his audiology screening with flying colors.

The audiologist was very sweet and kindly recommended that I take Spencer to get a developmental screening.  She recommended someone within my school district.

We went along with it- looking back that was a huge deal given my previous experience with the district!  But by this point, I had my own concerns.  I was ready for answers- I didn’t even care what they said as long as I could start the process of helping my kid.

A week after that developmental screening Spencer had his first IEP (Individualized Education Plan) and an educational diagnosis of autism.  He went from being at home with me full time to being in a full day preschool program for kids with autism.

To say this was an adjustment would be an understatement.  I had been home with Spencer since his birth and even though I was relieved to get him the help he needed and it sure was nice to spend quiet days with Samantha- I felt like I had failed him.

I don’t feel that way anymore.  I know I did my best in a difficult situation.

What do you say if you have concerns about a child?

I think the most important bit of advice I could give anyone with concerns about someone else’s child is to be gentle.  A bulldozer approach will only upset the parents and put them on the defensive.  I’m exhibit A.

Spencer would have probably gotten a diagnosis 6 months earlier if I had handled the initial evaluation better.  I don’t fully blame the district rep either- I was overly emotional about the situation and should have handled it with more maturity and grace.

If you want specific words- this is what I would say.   However- I would only say this if the parent comes to me with their concerns.

I try to never volunteer parenting advice that isn’t asked for even if I’m pretty sure there is cause for concern.  As you can see with my story it sometimes causes more harm than good. 

“I understand your concerns.  What may put your mind at ease is to take your child to the 3 year old developmental screening that’s offered through your school district.”

or if they have a younger child-

“I understand your concerns.  If you contact your school district they often have a program called Parents as Teachers.  A development specialist will come to your home to play with your kid and do an evaluation.  You would have a chance to ask questions about what’s appropriate for your child’s age.”  

Yes- even with my horrendous experience with a similar program for Spencer I would recommend them 100%.

I used a similar service with Samantha after we moved and Tyler, my other son,  had more ADOS evals than any kid should have to go through.  I was determined that if he had autism we were getting help fast!

My first experience with a representative from a school district was not with a gentle, loving soul.  However, I still recommend this service to people I love.  They will have an advantage.  They will have me.  

 They are not alone.

And neither are you.

If you are reading this diagnosis story because you recently went through a diagnosis of your child to the autism spectrum please know you are not alone.

You are now among a group of fierce warrior parents who will stop at nothing to protect and support their children.  We are a passionate group ready and willing to offer whatever help is needed to other parents because we know the hell it is to go through this alone.

Please email me if you would like further assistance in finding a developmental screening in your area.  I’ve become quite a pro at navigating school websites and getting to the right people.  Even if you live out of my area I’m happy to help you research where to begin.

Why I really love birds

As I write this I can hear Blues Clues coming from my bedroom TV.  Spencer, now age 17, still loves that show.  He has come a long way in his social development, communication skills and academics, but his love of preschool shows and toys lives on.  He is still obsessed with crayons and I am still impressed by the rainbow order thing.

Actually, I am impressed every day by the way he lives life with joy and song while facing such difficult experiences- just like the birds he loves so much.  In my “meet the bird” page I say all the reasons I love birds and why I call myself “Bird With A List”.

I left out one very important reason- my child with autism loves birds.  They are something we can connect over and every day we connect is a beautiful day.  It doesn’t matter if the sun is shining or if the birds are singing.  It’s a good day.

The latest CDC statement  states that one out of every sixty eight kids are on the autism spectrum.  So everyone knows someone who is effected.  Who do you know and love?

 

 

 

 

 

 

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