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December 20, 2014 / 28 Kislev, 5775
 
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Chronicles Of Crises In Our Communities

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Heart To Heart:

A heartfelt response to a mother’s heartfelt plea

Dear Readers,

We recently published a letter from “A Flabbergasted Mom” whose eldest son was diagnosed with Asperger’s Syndrome. Though 12-year old Shlomo had proven to be a difficult and obstinate child all along, his parents regarded his behavior as more or less a backlash of sibling rivalry and a stubborn character trait.

The Neurodevelopmental disorder specialist who unveiled Shlomo’s diagnosis considered the examination way overdue and prescribed a medication and therapy regimen. In her letter, Shlomo’s mother expresses her hope of hearing from other mothers of AS children, as the family comes to grips with this unexpected development in their lives. She also mentions having previously read a letter in Chronicles from a mother in a similar situation, although some time back.

A search of our archives reveals an eloquent letter written by the mother of a then 8-year-old son with Asperger’s (March 16, 2007). This mother sent us the letter below, in response to the heartfelt plea of Shlomo’s flabbergasted mom (see Chronicles Jan. 31 – An Unexpected Diagnosis).

Mi k’Amcha Yisrael

 

Dear Flabbergasted Mom,

I believe my letter may have been one of those you read some time ago regarding raising a child with Asperger’s syndrome. Firstly, you must not beat yourself up for having missed the signs of an Autism Spectrum Disorder and only now, at the age of 12, finally getting a concrete diagnosis for you son. Individuals with Asperger’s, for the most part, develop normally as babies and toddlers and tend to acquire language skills at the same rate as their neurotypical peers. This relatively normal development differentiates an “Aspie” from a child with a more classic form of autism where speech/language development is abnormal and delayed and may be accompanied by some degree of mental retardation.

As with your son and mine, individuals with Asperger’s tend to be extremely bright and typically excel academically. These are the kids who are often viewed as “nerds,” “awkward,” or “following the beat of their own drummer.” In many instances, people do not receive an Asperger’s diagnosis until they reach adolescence or adulthood. They always had a sense they were “different” but just didn’t know why. I hope knowing this fact provides you with some comfort: you are not the first parent to uncover what is going on with your child late in the primary years.

The challenges associated with the disorder are primarily social, emotional and/or behavioral, and depending on the severity of the child’s difficulties in these areas, can remain under the radar for many years. It is not uncommon to have secondary diagnoses such as anxiety disorder, depression, or obsessive-compulsive disorder with these individuals.

In addition, as with my son, Joey, children can demonstrate sensory integration dysfunction (difficulty integrating environmental stimuli through the different senses) resulting in sensitivities to sound, smell, touch, etc. For years Joey would have a meltdown when he got a haircut because he couldn’t tolerate the feeling of the scissor, the sound of the razor and the sensation of cut hair on his face and neck.

He has also received occupational and physical therapy over the years (in addition to speech therapy and counseling) to address deficits in fine motor skills, coordination and muscle tone.

With my professional background as a Speech-Language Pathologist and the astute observations of Joey’s preschool teachers, we were able to acquire a diagnosis at the age of 4½ , which is considered unusually young. With neuropsychological report in hand and an Autism diagnosis, my husband and I were able to secure a wide range of services for Joey.

He is now 15 and doing amazingly well. He attends a terrific high school that provides a level of support and service to meet his needs. In addition to the regular rigorous high school curriculum, his program is focused on teaching him the necessary skills he will require to become an active, independent and functional member of society.             The successes we have seen with Joey did not occur overnight. My husband and I have worked tirelessly over the years to advocate on his behalf and ensure that he is provided with the correct interventions and support, as well as the appropriate educational setting to meet his unique needs.

It has been nothing less than a roller coaster ride for us – one step forward, three steps back. Good days, great days and awful days. Days when I was ready to pull out my hair and be done with it all. What I can tell you is that it does get better. You must educate yourselves, secure the services your son desperately needs and ensure that the school setting he is currently in is on board with you and willing and able to take this journey alongside your son.

I’m sure you are overwhelmed and may not know where to even start. I know what it’s like… I was once there too. Rachel has my contact information. Please feel free to reach out to me. I will be happy to help you, your family and Shlomo in any way I can.

Kol Yisrael areivim zeh l’zeh

Dear Kol,

Kol hakavod to you and your husband who have apparently left no stone unturned in providing your wonderful son with every chance and opportunity to rise to his potential and shine. Your steadfast devotion is awe-inspiring and a lesson for all parents to take to heart.

Your contact information has already been forwarded and your kindness is much appreciated. May you have continued hatzlacha in all your endeavors and see endless nachas from Joey.

About the Author: We encourage women and men of all ages to send in their personal stories via email to rachel@jewishpress.com or by mail to Rachel/Chronicles, c/o The Jewish Press, 4915 16th Ave., Brooklyn, N.Y. 11204. If you wish to make a contribution and help agunot, your tax-deductible donation should be sent to The Jewish Press Foundation. Please make sure to specify that it is to help agunot, as the foundation supports many worthwhile causes.


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