A parent's first encounter with the Individualized Education Program--the IEP--can be intimidating. However, participating in special education planning is critical in assuring positive long-term outcomes for students with disabilities.
Parents and guardians of school-age children with disabilities need to be familiar with relevant regulations and procedures for developing an IEP to fully participate in IEP development and long-term planning. Similarly, students who have attained legal adult statues in their state and have assumed responsibility for their own IEP need information to assure information participation at their IEP meetings.
The special education system can be confusing, frustrating, and overwhelming. The Individualized Educational Plan (IEP) is the written document that outlines your child's specific educational program. We know a strong IEP is necessary for our child's individual needs to be met. Yet is is common for us to feel insecure and unprepared during our child's IEP meeting. Surrounded by teachers, administrators, and special education personnel, our voice can get lost. This toolkit was written to help you find your voice.
As family members of a child with Down syndrome, we come to IEP meetings with love for our child and a commitment to his or her education. We must also come with a strong understanding of the IEP itself, detailed information about our child's specific needs, and an understanding of appropriate goals. This IEP Toolkit is designed to help you gather the necessary information. Focused preparation is essential to the development od an effective education plan, and a strong IEP leads to improved educational success for your child.
A Promising Future Together National Down Syndrome Society: New Parents A Guide for New Parents of Children with Down Syndrome
Congratulations on the birth, or expected birth, of your baby! We understand that your baby may have Down syndrome. You probably have a million questions, concerns and fears right now. That’s okay. The most important thing to keep in mind is that this diagnosis is not as life changing as the fact that you have a new baby. And in most ways, your baby will be just like other infants. Every baby needs to be fed, held and most of all, loved.
There will be challenges in raising your child, but there will also be many, many joys. It’s normal to be nervous about what lies ahead, but remember that Down syndrome is a condition your baby has, it is not who your baby is. Now is the time to begin learning all you can about Down syndrome and this brochure is a great place to start.
You Are Not Alone: For Parents When They Learn That Their Child Has A Disability
Patricia McGill Smith
Executive Director National Parent Network on Disabilities
If you have recently learned that your child is developmentally delayed or has a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.
Most importantly, your baby is a baby first and secondly, a baby who happens to have Down syndrome.
It is generally suggested that parents not wait to tell friends and family members about their baby having Down syndrome. Even though telling family members and friends about your child having Down syndrome will be one of the most difficult things you face, don’t be afraid. Most parents who have a new baby want others to be happy for them and to extend best wishes.
Babies with special needs are often bombarded with a variety of health problems early on. Those babies who have Down syndrome often face respiratory tract infections and bowel problems. They can benefit from the gentle protection human milk provides. Breastfeeding also helps establish a bond in the midst of the strong emotions and high stress surrounding the birth of a child who has special needs.
I have a dream. My dream is born of 19 years of living with a daughter who has Down syndrome. It is a dream created by Amy as she continues to teach me, and others who know her, about life and living.
My dream is that the birth of every child be celebrated—whether or not that child has Down syndrome or some other disability. I say this with a heavy heart because I did not celebrate Amy’s birth. What a breach of faith that was! She has had to rise up against my early misgivings, sadness and disappointment. I worry that she knows somewhere deep inside that in those first few hours after her birth I didn’t want her. I wanted the baby who fit my ideals and my standards. Little did I know then that I had been given a gift—a daughter who would give true meaning to spirit, courage, love and joy. If only I’d known in those first dark hours that our life together would be more ordinary than extraordinary. If only I’d known that this daughter would more than fit my ideals and standards—she would fit hers, which are higher than mine.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide- books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.