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Autism New Jersey Fund - The Behar FamilyThe Behar Family

December 2017

Dear Autism New Jersey Family & Friends,

We’d love more than anything to be able to share a story of our son’s triumph over autism. A story filled with progress, hope and achievement. A story that many families, thankfully, can share. Unfortunately, that was not our reality, especially during the past eighteen months. At a time of great despair and fear for our son’s safety and health, one organization was there for us - Autism New Jersey.

Autism New Jersey Fund - The Behar FamilyIf raising a child with autism was easy, there’d be no need for Autism New Jersey or this letter. But it’s not. And for us, it’s been an especially difficult road filled with heartache and sorrow.

We have two sons with autism. Recently our younger son’s (now 18 years old) challenging behaviors increased dramatically and altered our lives. We were afraid to be in the house with him, as he would attack us. We tried many strategies, but nothing worked. For everyone’s safety, we came to the heart-wrenching decision to place him in a residential facility in another state.

Autism New Jersey Fund - The Behar FamilyWe placed our trust in a facility which promised to care for our son. Tragically, when the facility failed to do so, we were forced to remove him from their care. There were many barriers to transferring him. Bureaucratic red tape, countless meetings and calls with insurers, state agencies and our school district, and the sheer lack of any alternate placements equipped with the trained professionals needed to address his escalating and dangerous behaviors, left us desperate. More tragically, it left our son with two cataracts and a detached retina, results of the damage of continuously hitting himself. Our son sustained serious injury under the care of that facility.

Our new goals became to bring him home and save his sight. Our incredible pediatrician spent hours on the phone trying to find a doctor who would operate under these circumstances. The surgeon we found agreed to perform the operation only if he could learn to wear eyeglasses and a helmet to ensure a successful recovery. We had no supports in our home. We had to do this by ourselves.

Enter Autism New Jersey. We’d long known about the good work they’ve done, having attended their trainings, conference, and support groups over the years from the time our boys were first diagnosed. Once we contacted them to explain the gravity of the situation, they stepped into action, assembling a “task force” to help us. They organized conference calls with insurance companies, identified a doctoral-level behavior analyst to design a treatment plan, and connected us with an advocate. Autism New Jersey helped us find staff for 24-7 home support after his first eye surgery.

Finding qualified professionals to work with a child with self-injurious behavior and aggressions, especially under these circumstance, was no easy task. At our family’s darkest hour, no one else had the combined understanding of funding, service navigation, state regulations, and clinical expertise that Autism New Jersey had to help our son and save his sight.

For us, they have been our guiding star, our sherpa, our friend. Autism New Jersey has helped both our boys receive the services and needed programs that have brought some normalcy to their lives and ours. They educated us on all the resources that we should be using. They gave us guidance and support, not only for our children’s education but also for our well-being.

We ended up having to have three eye surgeries for our son. We fixed his cataracts but his retina was not able to be attached. He will be blind in one eye. But thankfully, his aggressive behaviors have diminished and we’re hopeful with continued treatment, he will make more progress.

Autism New Jersey Fund - The Behar FamilyThe reality is that we are not alone. 1 in 3 children with autism exhibits self-injurious behavior, 84% of whom continue this behavior during their adult lives. We need programs and schools in New Jersey that can effectively treat children and adults with severe challenging behaviors. Currently, we are teaching our son in a church. He does not have a school placement.

Autism New Jersey understands the service gaps that exist for these children and adults. They remain committed to increasing program capacity and advocating for the adoption of an ABA treatment approach to support families more effectively. They remain committed to those like my son, so often isolated, hidden and untreated.

In a world where autism exists, it is a blessing to know that Autism New Jersey does also. For this reason, we ask that you consider making a donation to Autism New Jersey to support the important work they do and the lives they’ve changed for the better.

Thank you,

The Autism New Jersey Fund - The Behar Family

Deborah and Michael Behar

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