Special Family Network

Removing a food from your diet because you or a loved one has been diagnosed with an allergy or intolerance be very difficult. People with Celiac Disease are unable to process a protein called gluten. Gluten is found in many common products that contain barley, rye, and wheat. Here are some great websites that offer Gluten-Free recipes.

Celiac Spruce Association

Celiac.com

Recipezaar

The Gluten Free Kitchen

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Originally uploaded by honeybunny062.

Many people wonder why someone sets up the website that they run. My reason is simple. I have two beautiful boys, Luke and Josh. Luke is almost 2 and has Shwachman-Diamond Syndrome. Josh is still a baby and has Down Syndrome. One thing that I have learned by being the mother of these two wonderful boys is that having support and being educated about your child’s condition can make all the difference in the world.

Just an update to let everyone know that the site is about 60% complete. We appreciate your patience as we work hard to complete it. Also, we hope to publish our first podcast by the end of the month. We have an interview that is in the process of being set up that will deal with Music Therapy. If you have any specific questions that you would like for us to ask about Music Therapy during our podcast interview, please contact us.

For those of you who live in the Middle Tennessee area, The Down Syndrome Association of Middle Tennessee will have the 2007 Fired Up! For Down Syndrome Conference May 4th and 5th. There will be several sessions that both parents and professionals can attend. Some of the topics to be covered include Nutritional Supplements, Music and Art Therapy, Sleep Disorders, After Early Intervention, Mental Health Concerns, Potty Training, Opportunities After High School, Speech in the Early Years, and much more. The registration fee is $50 per parent or family member and that includes lunch for both days. You can visit the Down Syndrome Association of Middle Tennessee’s website for more information.

By Honey DensonÂ

Education is one of the main concerns expressed by parents of special needs children. They want their children to be included in all aspects of the academic experience and not be left behind simply because they are considered “different.”

The education of a special needs child begins at birth. First and foremost, a baby is a baby, no matter what their health status is. All babies need love and attention for proper brain stimulation. Read to your baby.  Sing songs and recite nursery rhymes. But most important, give a lot of hugs, kisses, and “I love yous’.”In 2004 the Individuals with Disabilities Education Improvement Act or IDEA was passed. It basically ensures that all children, regardless of their disability have the right to a free public education including early intervention. If you think that your child might require special education, you can request that your child be evaluated by your state’s early intervention program. If your child is delayed 40% in one area or delayed 20% in two areas, he or she will qualify for services. You and the early intervention services will then create what is known as an Individualized Family Service Plan, or IFSP. An IFSP is basically a road map that shows where your child is and where you would like them to go. The IFSP will include goals for your child to reach, what type of services will be needed in order to reach these goals (physical therapy, speech therapy, etc…), who will be providing these services, how frequently will these services be provided, and where these services will take place. The IFSP is reviewed every year to make sure that the child is on track and if services need to be added or dropped.At the age of three, the child will go through transition. Basically they will move from early intervention with an IFSP to public special education with an Individualized Education Program, or IEP. The IEP will include new goals for the child and how they will be met. The IEP is reviewed every year. Those present at the IEP meeting may include the parents, a general education teacher, a special education teacher, an administrator of the school, specialists in your child’s disability (invited by you or the school), guidance councilors, and, if you wish,  your child.

When making or reviewing your child’s IEP, it might be a good idea to bring along a little packet explaining who your child is and what you think is the best direction for your child’s education. Frequently the general education teacher and administrators at the meeting know nothing about your child. The only thing they know is that they have had their schedule interrupted to attend an IEP meeting about a child that they will probably never see in a classroom setting (the general education teacher does not have to be a teacher that your child has). Having a little booklet of information about your child gives them a story and a reason to care. You can include pictures, art work that your child has made, or even copies of their baby book pages. Let them know how wonderful your child is and how hard you are working to make sure that they are getting the best education possible.

If you ever feel that your child’s goals are not being met, you have the right to call the administrators and remind them of IEP and its goals and how you think that the problem might be fixed. Not having enough money is not an excuse that the schools can use in defense if an IEP goal is not being met. They will have to find a way.

Making sure that a special needs child has the education that they deserve is up to the parent. You are your child’s best advocate. Make sure that you know as much about your child’s condition as possible and take the time to review your child’s rights as stated in IDEA. You are your child’s best hope for a bright academic future.

We are proud to announce that our Special Family Bookstore and our Educational Toy Store are both up and running. Please feel free to visit each one to see if there are any products that might be helpful to you or your special needs child. 10% of our profits from the Educational Toy Store will go to Shwachman-Diamond America.