It began with a phone call. Leslie Dekko wanted to submit a letter to the editor to acknowledge and thank SULAM for everything the school had done for her son, Max. Her son had suffered a stroke in utero and was born with cerebral palsy. She had been told to just be happy with what little her medical team thought Max would eventually achieve. But, as Dekko said, “a mother never stops being a mother,” and she continued to fight and advocate for her son.
Her struggles were overwhelming — she could not afford the therapies. But she didn’t give up. She found ways to provide Max with the resources he needed. And her sacrifices have paid off. At 14, Max can now read at a second-grade level, and Easter Seals has recognized him for his inspiration.
I was moved by her story and realized how little I understood about what it’s like for families with special needs children. How expensive and time consuming the therapies; how little insurance covers; how difficult it is to be able to get your child to therapy when you must work to pay for the therapy.
And that’s just the beginning of the challenges.
I met with the Dekkos and learned more of their story but I didn’t want their story, as compelling as it is, to be the only story. I wanted to meet with more families, learn about more communal resources. And the more I learned, the more fearful I became that no matter how much I wrote, I could never quite tell the full story.
But I’m going to try. It’s too important not to. The number of persons with special needs is rising. As much as our community already does, we need to do more — do more to provide education, job training and housing — do more to shift the attitude and recognize that every person, no matter his or her abilities or challenges, has a place as a valued member of our community.
This is what I heard from every family. No one wanted pity. All referenced the poem about planning a trip to Italy, about dreaming about going to Italy. But somehow, on the way to Italy, the plane changed direction and landed, not in Italy, but in Holland. Holland, the parents explain, is not the dreamed-of Italy, it is different from Italy, but it is still beautiful.
This is their experience. Their children are not what they had dreamed of, when they dreamed of children. But their children are still beautiful. Their families, they say, would not be their families without them.
I begin this week on Page 1 with the story of Lotte who, at 85, is the oldest resident within the Jewish Foundation for Group Homes. Through her, we learn that no matter the age or the adversities, each of us can grow, each of us can reach our potential. Stories of others will follow and in each we’ll highlight the resources that helped and the resources that are still needed. Please understand that there are countless stories — I cannot tell them all, and I am certain there will be wonderful, amazing people and organizations that won’t be mentioned. Just know that I will do my best.
There is much to do. There are stories to be told, awareness to be raised, attitudes to be changed, opportunities to be created.
I want to hear from you. Let’s start this conversation.
