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Health & Fitness

"Special"

Parents of children with special needs discuss share their experiences.

Special china for a special day, special delivery, special guest—these images evoke honor, respect, and importance. So why, when we talk of special education, or children with special needs, do people often nudge each other or feel uncomfortable? Several parents of special needs children gathered at Good Shepherd last Sunday afternoon to meet each other and talk about some of the joys and struggles they face. It was a rich and moving conversation that needs to continue with more voices. Here are some of the themes I heard:

Money: How do you set up a special needs trust, to provide for your children once they are adults, once parents die? It takes several months and between $10-$20,000 of legal fees, money that is often needed for therapies or equipment now, so the thorny question of future plans gets deferred and deferred. What kind of financial resources are available for families who are struggling to make ends meet? Did you know that there are job training programs available until a special needs child is 21, with the goal of helping them become as independent and financially secure as possible, but if your child gets a high school diploma before 21 that aid is cut off? 

Education: What about education, advocacy, and techniques to work with educators to provide the best learning environment for children of all ability levels? It’s important not to be adversarial, and it’s important to have an idea of what resources are in fact available and how to work effectively with therapists, teachers, and schools. There are lawyers and advocates for hire, but they are expensive and still don’t know particular children as well as parents and teachers.

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Respite: “Do you know of baby sitters who are trained and capable of taking care of your child?”  “We can never go out alone, as a couple, for a break.”  Grandparents, aunts, uncles, friends, are sometimes not able to handle an “unusual” child. How hard would it be to set up a monthly evening where parents pool money to hire enough well-trained sitters to feel safe leaving their children to go out? Yes! What if we opened it to all children—the virtue of inclusion is that all sorts of children learn to interact and work together and respect each other? One of the parents described a weekend conference addressing their child’s particular condition which offered good child care: a two-to-one, adult-to-child ratio for special needs children and one-one ratio for siblings or children without disabilities. It was good for everyone!

Siblings: Oh, and what about a regularly scheduled special activity just for siblings of children whose parents rightly have to devote more attention to addressing special needs? Yes—fun, and maybe hire a counselor just to accompany them, listen, and take advantage of “teachable moments” to let children express some of their feelings safely. 

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Resources: How are our children going to do work they are in fact capable of?  Project Search is a program in Cincinnati for young adults with intellectual and developmental disabilities, and their workplaces and communities, to develop productive workplaces and products together. There are lots of models and resources online—how do you sort through the plethora of information? Do you know anyone who has used this website, or this agency—what’s its reputation? 

Pain: “I had never understood discrimination until I had a special needs child.”  Parents talked about watching other parents move their children away from their children. They hear complaints that “those children” take up the money and resources, as if extra support given to children who need it somehow hurts children who don’t. Knowing smiles and laughter and pained, sympathetic looks were exchanged.

Then it was time to go—to pick up toys, put away food, and go on about life. And plan next steps—everyone went away with a bit of homework, a new helpful idea or insight, and a desire to bring more folks into the conversation. So there will be another meeting at Good Shepherd on Sunday, January 29, from 2-4 p.m.—please spread the word.

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