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GUEST POSTING: THE JUDGEMENT FREE AISLE


“Clean up on aisle 9.”

Yeah right, I wish it were that easy.  If this were a tangible spill, they would simply call a team member to clean it up. But how do you clean up an emotional spill?  No one wants to clean-up the sharp fragmented edges of a tantrum thrown by a four-year-old.

The stares of the others speak loudly. “She should really do a better job at teaching him manners at home so this awfully uncomfortable ‘scene’ is not seen in public. And just look at his helpless mother; why she can’t even quiet his piercing screams. If I were her, I’d… ”

If you were me, you would have a child diagnosed with Autism.

Amazing how many minutes in a given day I spend babysitting the assumptions of strangers in an effort to provide a more comfortable atmosphere.   I say programmed phrases like, “Oh dear, someone needs a nap,” or “Mommy’s not going to buy you anything with that attitude,” or the ultimate crowd-pleaser, “I’m going to count ten, and you had better get your act together.”  The truth is, I’ve been counting for over a year now, and it’s not an act.

Birth to 20-months was a great time for our son Grant, and we were proud that every baby milestone came with notable ease. He rolled over, sat up, crawled, and then walked much earlier than most. His accomplishments were our golden verbal trophies, and we proudly displayed them in conversations everywhere.  Time was moving, and physically, so was he.  His language, however, seemed to stand still. At nearly two-years-old, he returned to babbling, and then, only scattered sounds. There were no words.

The far-off stares in his eyes, the repetitive runs back and forth into corner walls, and the unbreakable fascination with disassembling objects, were becoming all too frequent.  He slowly began to drift away inside himself. When the official diagnosis came at 34-months, we plunged into a rigorous regime of Speech and Language camps, Applied Behavioral Analysis (ABA) Therapy, Social Skill Camps, Extended School Year programs, and countless Early Interventionist meetings.

The progress made in just one year has been awe-mazing. On most days Grant is focused, making full eye contact with his quarter-sized beautiful brown eyes. He is able to write his name and spell it using keyboards or magnetic letters. He appropriately uses his toys and is aware of the presence of others.  He speaks with vowel sounds and is learning to receive and show affection.

Most amazingly, he has become a teacher of sorts to his two-year old sister, who is verbal. He, making eye contact with her, will point to the letters of the alphabet   expecting her to correctly say the letter he points to.   Just this week, he pointed to the letter, “W”, which he pronounces, “ouble-oo.”  His sister looked at the letter and said, “ouble-oo.”  He returned a stern look and pointed to the same letter again. This exchange happened twice until finally she said, “Double-u.” He was pleased, and then pointed to the next letter, X.

Yes, indeed, that’s him.  That’s my son.  That’s my son whose nickname is, “CHAMP.”   That’s also the little boy who just had a meltdown on aisle 9.

In these “Aisle 9” moments it becomes painfully obvious that the average spectators haven’t paid the cost of admission to see my life. They judge my entire performance on this one episode. They hear the out-of-control screeching and see a child with no obvious physical disorder, and think, “Ahh, yes, behavioral issues.”

This is not intended to cast stones at those who have misjudged situations like mine. Instead, it’s an invitation to meet me on aisle 9 where brightly colored boxes of understanding, sensitivity and perspective are shelved and wait for those willing to look for them.

Sarena James, 35, is a wife and stay-at-home mother of three who enjoys theater and writing. She and her family reside in Charleston, SC where they frequent historic tours and relax beachside. Originally from Aurora, CO, Sarena is a graduate of Paine College in Augusta, Ga

18 Comments

  1. Jerome Davis

    July 29, 2010 at 8:15 pm

    This needs to be shared nationally.

  2. Patricia

    July 29, 2010 at 9:46 pm

    Nicely written! I’ve worked with children with Autism so I am well aware of your point and it is well taken.

  3. Johanna

    July 30, 2010 at 8:53 am

    Well said as always Serena! You and RJ are great parents with extremely talented kids!

  4. Melanie J

    July 30, 2010 at 9:12 am

    Wow, this seems like a page from our life! My son was dx’d with PDD-NOS when he was 22mos. I noticed that Miles’ speech was slow to take off. He reached his milestones eary to on time and I had tried to tell myself that it was ok and so was everyone else. I knew in my “mama gut” that it wasn’t. I had gotten intouch with some of my old collegues form an EI agency I worked with to come and do an eval. I was prepared to hear, “you child has a speech delay” , “your child has a learning delay”, etc, but when they said that he red flagged for Autism, all of the sudden my world was going in slow motion and without sound. So now I was panicking inside and my husband and I couldn’t beleive our ears. So the evaluators ordered up a batch of other evals and this time they wanted Miles to see s Developmental Psychaiatrist. At the DP was where he was formally diagnosed with PDD-NOS. Miles began Speech and OT therapies at his Daycare and was making tremendous gain with the therapist, but not at his daycare. Miles was in the toddler(2yr) room and already knew his alphabet ( not just the song but could recognize them) and could count and recognize his numbers to 20, colors and shapes as well. He was bored in that class, they refused to let him move to the three yr class during circle time to keep him engaged and they wouldn’t accomodate him in his current classroom. I had to flex my muscles and throw my Master’s Degree in the faces of “these so called educators” and called in the manager of the center and reminded them of ADA and the IDEA. All of a sudden they couldn’t wait to accomodate him. Shortly after I removed him from the center and he has been at home with me and attending Easter Seals 3 times a week. Miles is doing great! He has taougth himself how to speak some Japanese, loves numbers and letters still. We still have our “Aisle 9 moments” but that is pat of the package!

    **** Renee I think this is my favorite one so far keep up the good work!****

    Melanie

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  6. Shelli

    July 30, 2010 at 3:45 pm

    I admire you so much, Sarena, for putting yourself out there for other moms who still rarely get out of Aisle 9. Look forward to seeing you in another aisle soon!

  7. Hatzel

    July 30, 2010 at 4:24 pm

    What a wonderful piece! Really good insight for those of us not familiar with Autism.

  8. Janet Robinson

    July 30, 2010 at 9:42 pm

    Sarena,
    I am so proud of you and Raphael. You are awesome parents and I commend you for sharing with the world. Enjoy everyday and every moment. Expect the unexpected and look for the miraculous. Love you guys.

  9. Sharon

    August 2, 2010 at 6:28 am

    We should all have an Aisle 9, Sarena. You did a great job of showing that what one sees on the surface is never the whole story … thank you!

  10. Lois Dismuke

    August 2, 2010 at 8:19 am

    Oh, Sarena.

    I marvel at how you give yourself permission to share parts of your private experience. It takes a lot of strength to be so selfless. You are a wonderful writer. And you are one of the strongest people I know.

    Lois

  11. Allison Coggins

    August 2, 2010 at 2:04 pm

    Thank you for sharing your story with others. I truly believe that the more we educate, the more understanding and acceptance there will be! Your little champ has made huge gains because of the team work that has been given by everyone…including you and Mr. James. You are such an inspiration to me as a young parent and educator!

  12. LaGayle Marie

    August 13, 2010 at 11:40 pm

    Sarena, thank you so much for sharing this with me. It is so vivid and telling, what an awesome testament of the human spirit. I know that “Champ” is going to continue to do awesome and amazing things in his life.
    God bless you and your beautiful family

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  14. LaDoris

    August 26, 2010 at 7:09 am

    You have given us a perspective that would be almost impossible to comprehend unless we were experiencing it directly.

  15. CYNTHIA KIRBY-DRAYTON

    August 26, 2010 at 9:33 am

    As parents, we go through life anticipating from birth and judging our skills as parents and the moments in our children lives on a scale of 1 -10. Champ certainly has 10 moments, but don’t we all? But who are we to judge and live vicariously through our children? That’s what we do–. I can only imagine what you are going through, only because people like you, Sarena , are willing to share. Champ is more brave than we are, to live in a world with people who live on the outside of his world; yet he allows us to connect with him at times. Clean up on aisle 9 is simply cans placed chaotically on the floor of his life by Christ to be used as stepping stones for Champ to reach aisle 10. Them folks over there are only the stepping stones used by God because without Him, they are stones with no strength or right to cast them?

  16. Audra Roper

    August 26, 2010 at 4:59 pm

    Captivating article, very well written. Having worked with autistic children and having an autistic nephew, I fully understand what you are experiencing. Your article has a great message that does not come across as “preachy” or “sad sallie”, but illuminates a valid point. You will continue to be amazed at Grant; I just got off the phone with my nephew…he called me!

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  18. Will Jones

    August 22, 2011 at 9:49 am

    This is an absolutely beautiful piece and a great eye-opener.

    Thank you for sharing it with me.

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