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

http://www.sailingautisticseas.com/

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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27 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.

    Reply
  2. Inform and Engage

    I know how hard it can be for individuals to share their personal experiences at times, but sharing your experience helps everyone. Thanks for sharing and I look forward to reading part 2.

    Reply
  3. zenobia

    Thank you for this! My three Year he has ppdnos autism. He also receive occupational therapy.being the parent of a special needs child.

    Reply
  4. 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!

    Reply
    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.

      Reply
  5. 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.

    Reply
  6. 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.

    Reply
    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.

      Reply
  7. Nellie

    Thank you so much for sharing our autism stories. This is also very similar to my story. Love the late bloomer reference! ;) Can’t wait for part two!

    Reply
  8. 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.

    Reply
    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.

      Reply
  9. Lizzie

    You realise initially when i first started discovering this I failed to know
    everything had become entirely possible that exactly what you addressed
    in this article genuinely existed.

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

  11. 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.

    Reply
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