Educational Information

One of the most important issues that families of children with Primordial Dwarfism will face is helping their child to find ways to interact with the average-sized children in the community. This includes the decision of how to school the children. While some families have chosen to home school their children with Primordial Dwarfism, many other families have decided to send their children to local pre-schools and public schools. The decision to 'mainstream' children with any disability can be the cause of many hours of anxiety. Parents not only have to cope with worries such as safety and how their children are being treated, there is also a great deal of paperwork that must be completed. Often there will be resistance to mainstreaming by the local school boards, whose main concerns are for the budget of their institutions.

Once the decision has been made to educate a child with Primordial Dwarfism through the public school system, it is important to learn and follow the correct procedures in your community for schooling special needs children. The Individual Education Plan (IEP) is perhaps the most important document in this process, so it is vital that parents make the completion of this document a priority. Filling out the IEP is usually a collaborative process which involves parents, educators, and the child as well. On the following page is a sample Individual Education Plan (IEP) that can serve as an example for any parents with children nearing school age. In the section below is a contribution from a family of a 'mainstreamed' child with primordial dwarfism.

We had to go through many meetings with school and Board of Education officials in trying to determine the best course for Dan's education. Danny was identified for help very early, and was in the state's "Birth to 3 Yrs." program. this was tremendously helpful to us in reassuring that Dan was progressing at his own rate. Dan was also eligible for the 3-5 yr. old pre-school, another state provided service, which he attended 4 mornings a week. He qualified for this program because of deficiencies in his hearing and speech, not because of short stature. Other parents have also conveyed to us that many states won't consider short stature by itself as a qualification for state supported pre-school programs, so be aware that you can use other symptoms of the child's syndrome to help them qualify!  After attending regular Kindergarten at 5 yrs. old, it was decided that Dan would attend a year of transitional class. Dan was able to use this year to "catch-up", and was ready to continue into First Grade at age 7.

By the middle of Second Grade, it was apparent that Dan needed extra help in Reading and Math. This began a year-long process of getting Dan identified as special needs, so that he would qualify for additional help. At the end of Third Grade, he began to receive "Resource Room" help, and for the next three years, (to the end of Grade 6), Danny did extremely well in his adapted program, consistently making the honor roll. He did so well, in fact, that at the end of Sixth Grade he was released from the Resource Room program, under protest from us.

Consequently, subsequent grades in Junior High and High School were much more of a struggle for Dan. We were in constant contact with Dan's team of teachers trying to catch problems before they get out of hand. Perhaps the most important thing we learned during these years was that teachers are much more willing to extend special efforts for their students when parents remain engaged in the education process!

Some tips we've learned over the years:

• Know your child's teacher - check in at least once a week to keep on top of things.

• Before each school year, go into the school - classroom, cafeteria, bathrooms, coat room, gym, library, lockers and art room, and request modifications as needed. As an example, Dan has a special chair and desk that traveled with him from grade to grade through elementary school. In Middle school, there are four different chairs and desks, and these will travel to high school with him when he moves on.

The educational system can be very intimidating. generally speaking, we had primarily good experiences with the school system here in Connecticut, but we were always questioning policies, and keeping Dan's best interests in sight. In light of the ever-shrinking budgets for education around the US, it seem likely that good educational assistance programs will be ever harder to find for new families. Please take advantage of the experience of other families who have children with similar needs, if possible. The Contacts page has e-mails for Jackie Kritzeck and Doug White, who can probably direct you to someone who can share helpful past experiences.

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