Facing Autism: My Journey to Acceptance PT I

BY: - 27 Aug '13 | Parenting

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FacingAutism

Our first meeting about Angel’s developmental progress is one that I will never forget. It was the first time that someone suggested that he may be on the autism spectrum. This was four years ago and back then I had no idea that we were just beginning our journey with autism.

I remember my husband and I walking into the meeting room with our two-year old, Angel. He immediately began playing with some toys while his dad and I sat at the table waiting for the meeting to begin. Everything was going well until the district representative started asking us  questions.

“Does he bang his head?” she asked.
“No,” I replied.
“Does he rock back and forth?” she asked.
“No,” I replied again.

By her second question, I became agitated. I had no idea what my husband was thinking but I knew where the district representative was going with her questions. I was waiting for her to say the word autism. Yet, I was also afraid of hearing the word autism.

I admit that I did not really understand what autism was. I do recall watching Jenny McCarthy talk about it during an interview with Larry King but I did not know anyone on the autism spectrum.

Facing Autism Part 1.jpgA few minutes later, the district representative casually said, “I think he is the A word.” My body went cold with anger. I remember thinking that this lady was not qualified to diagnose my son. I remember thinking that my son is fine. He just has a little speech delay. He will grow out of it. He will start speaking soon like all the other children his age. I even remember my in laws telling us that my husband did not speak until he was four. I remember thinking that we still had two more years for Angel’s words to come.

Whenever I voiced my concerns about Angel’s speech delay, people would say, “Oh he is just a boy. Boys do everything late.”  His preschool teacher even offered me this gem, “These goals on his IEP, don’t pay them any mind. He could be a late bloomer.” I believed her.

She even told me about a book called Leo the Late Bloomer. In the book, Leo’s dad wonders about him being a late bloomer. Leo’s mom asks his dad to be patient. In the end, Leo can do everything that he could not do before. My Angel is not Leo.

In fall of 2009, we had ear tubes put in Angel’s ears because of fluid buildup. After his surgery, I waited and waited for the avalanche of words to come. I had heard stories of other children speaking after getting ear tubes. The words did not come for Angel. In fact, the only change was that he would scream whenever we turned on the vacuum.

When Angel turned four, he only communicated with us using sounds and single words. As time went by, Angel’s progress reports and evaluations became harder to read. His fine motor and gross motor skills were lacking. Now he also needed occupational therapy and physical therapy.

Finally in 2011, I got the progress report that would break me. My now four-year old son was emotionally and cognitively only 1.8 years old. I did not think that it was possible for a broken heart to shatter into tinier pieces.

The tears came but as they rolled down my face, they also gave me a jolt into reality. My son needed help— desperately. It was time to dry my tears, pull my head out of the sand, and finally get to work!

Check back every other Tuesday for additional articles from Kpana Kpoto as she shares her experiences and what she learns as she raises her son that has been diagnosed with Autism.

BMWK – When did you first realize that your child was not developing typically?  What did people say to re-assure you? What did you do about it?

*IEP stands for Individualized Education Program

About the author

Kpana Kpoto wrote 38 articles on this blog.

Kpana Kpoto, also known as Miz Kp, is a special needs advocate and blogger. She provides resources and support for autism parents through her blog, Sailing Autistic Seas and her support group, Bronx Parents Autism Support Circle. Kpana lives in New York City with her husband and only child, six-year old "Angel" who is conquering autism one milestone at a time.

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45 WordPress comments on “Facing Autism: My Journey to Acceptance PT I

  1. Irene

    Wow. Very touching. Thank you for sharing this. It helps to hear the words coming from someone else! It helps us all feel connected, and not alone. Thank you for sharing your story! Looking forward to part 2 and more in the future.

  2. Shelley

    Thank u for sharing your experience. I hope this empowers other parents to seek help early when they see any sign of developmental delays or mental illness. Outcomes are significantly better with early intervention. We have to share our stories to eradicate the shame and stigma of these conditions. Our kids deserve every opportunity to live full lives in spite of having special needs. With the novel technological advances and appropriate accommodations, our kids are going to college and living independently in many instances. I hope you’ll get involved in advocacy efforts to raise awareness about ASD (particularly in the black community). Check out Partners in Policymaking in your local state for advocacy training and Tisha Campbell-Martin and Ladonna Hughley’s (D.L. Hughley’s wife) initiative to raise awareness about ASD in our community. It’s called “Colored My Mind.” What feels like a tragedy can become a blessing if u allow it to be . . . Blessings!

    1. Kpana Kpoto

      Shelley, I am with you 100%. Sharing helps to decrease the stigma for sure. I am familiar with Color My Mind the work these women are doing to spread autism awareness. It is needed in our community. In reference to your subsequent comment, no problem. I am an advocate by nature. I can’t sit still without sharing and trying to enlighten and help others. Thank you for commenting.

  3. Shelley

    I hadn’t read ur bio previously. I apologize for overlooking ur current advocacy efforts. Maybe the info I posted earlier will be a blessing to others. Selah.

  4. Pamela Huang

    Thank you i think now is the time to really convince my sister that her sonvhas a problem.We kept saying he is a late bloomer and thought he didn’t need any help.Thank you for the enlightment we were in denial for a long time.

    1. Kpana Kpoto

      You are welcome , Pamela. That moment when you realize that your child is not a late bloomer but actually has some significant delays is a light bulb moment indeed. My prayers are with you and I also pray that your sister is open to what you have to say.

  5. Charles McDaniel

    Thank you for sharing. I’m guilty of the thinking of I didn’t think “we” had an issue with Autism. Now I’m willing to take a more proactive approach concerning my children.

    1. Kpana Kpoto

      You are welcome, Charles. Autism can affect anyone. It does not discriminate. Because of the disparities in how it is portrayed in the media and how late our children are diagnosed awareness is certainly needed.

  6. Pingback: Applied Behavioural Analysis (ABA) For The Betterment Of Your Autistic Child - The Good Mother Project

  7. Ashley Stone

    Thanks for sharing this Article, I have a 5 yr old who has symptoms of Asperger Autism, I m gonna admit I was in Denial only because, I was uneducated in the knowledge of this Disorder. As African Americans we tend to put fear up as a guard to a lot of emotions and situations that occur . I’m now getting all the information, I can to help me in my journey FACING AUTISM.

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Mean Kindergartners! 5 Ways to Nip it in the Bud While They’re Young

BY: - 28 Aug '13 | Parenting

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TNMGirlsSchoolBus

Last night, I attended the very first meeting for my two youngest daughters’ troop.  Most of the girls in the troop are in Kindergarten.  This first meeting was more of a parents meeting (and the girls just played.)

The other moms and I began to share our daughters’ experiences with Kindergarten so far. For the most part, all of the girls are getting along fine in school.  But, there were also stores of:

  • boys and girls kissing on the playground (that’s one that my own daughter told me), 
  • clicks on the playground and mean girls
  • kids not playing with each other because they are different and because they are not dressed “right”

This is nothing new…playground drama is as old as the playground itself.  And it’s up to us, the parents, to ensure that our kids: 1. are confident with themselves and know that they are special, 2. appreciate differences in other people,  and 3. know how to treat other people.

Here are 5 ways that I teach my kids to love themselves as well as others:

  1. Celebrate what makes them unique.  All of my kids are special in their own ways. I try to remind them daily about what makes them so special.  I want them to have a healthy dose of self-confidence, so that when someone says something “out of pocket” to them…it will just roll off of their shoulders.
  2. Teach them how to treat others.You have to be intentional about teaching your kids manners and how to respect other kids.
  3. Tell them that being mean will not be tolerated.  Don’t get fooled into thinking that your little angel could not possibly be one of the mean kids on the playground.  Let your kids know that there will be serious consequences if they are caught being mean.
  4. Keep the lines of communication open. I am all up in the playground drama.  I ask my kids daily what’s going on at school and on the playground.  Of course I get the universal answer at first: “Good.”  But then I dig deeper until I get the details.
  5. Involve them in activities that reinforce these principles.  Which is why they are a part of the troop.

The troop leader asked each parent what we hoped our girls would get out of participating.  And it seems that all of the mothers had similar answers.  We wanted our girls to:

    • celebrate diversity and to know that it is okay to be different
    • to form a sisterhood with the other girls in the troop
    • to be of service to their community.
    • to have a safe place to be themselves.
    • to have fun, and
    • to have a camping experience (minus actually sleeping outdoors….none of us wanted to do that….lol)

My oldest daughter was a member of a troop for 3 years, and I can attest to the fact that she had a true sisterhood with other girls in her troop. And, I really loved that fact that they were taught to love themselves, and others, and their community.

Our Girls, enjoying their So So Happy Greeting Cards from Hallmark

Our Girls, enjoying their So So Happy Greeting Cards from Hallmark

I am also loving Hallmark’s new line of products, SO SO Happy™.  This is a line of cards, party supplies and gifts aimed at encouraging love, acceptance and positivity among kids.  “Hallmark’s mission – to make the world a more caring place by helping people make meaningful connections with each other – aligns perfectly with SO SO Happy’s mission to promote positivity, build self-confidence and inspire acceptance,” said Claire January, senior licensing account executive at Hallmark. “We are excited to partner with SO SO Happy and offer products that will boost kids’ confidence when they head back to school, as well as on birthdays and any day of the year.”

BMWK – Please share with us how you “nip it in the bud” with your own kids.  How do you teach your kids to embrace their individuality while respecting the individuality of others? How do you inspire self confidence in your kids?

Each new day provides you with an opportunity to have special moments with your family.

Disclosure:     This post is part of a series about Back to School encouragement that is sponsored by Hallmark.  All opinions and editorial content expressed are my own.

About the author

Ronnie Tyler wrote 504 articles on this blog.

Ronnie Tyler is the co-creator of BlackandMarriedWithKids.com and co-producer of the films Happily Ever After: A Positive Image of Black Marriage, You Saved Me, Men Ain't Boys and Still Standing. The proud mom of 4 has been selected by Parenting Magazine as a Must-Read Mom and is one of Babble's Top 100 Mom Bloggers.

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