Family Resources: March 2006

Morgan, 8 years, partial trisomy 18 with unbalanced translocation

Sophie, 8 months, Trisomy 18, angel

One of the of the aims of the TRIS project is to raise awareness of rare trisomy conditions and the variety of situations and concerns families encounter. This page is intended to share resources that families can use in their daily lives.

We are now archiving previous months' Family Resources pages.

Money Saving and Life Care Information

If you are not planning for your child’s future you might want to start thinking about it. You may think that you will not have to worry about it, but something could happen to you tomorrow. Who will take care of your child then? I know there is a lot you have to handle day by day but taking a little time to plan for your child’s future may be one of the most important things you do for that day.

MetLife has a web site that might help you get started. They have a special program designed to help plan for children with special needs future life needs.

Another site that you might want to look at is at the American Academy of Pediatrics . This web site has things you may have not thought of, such as guardianship if something might happen to you, and a will and testament. It provides a checklist you can download tohelp ensure you have considered all things.

The Arc has a document that tells you what to look for and how to be sure any information you get from others about your child’s future planning is legal. It also provides steps in complete successful planning.

For those who deal with transportation issues Ford is offering cash assistance of up to $1,000 for the installation of adaptive equipment, and up to $200 on altering devices. This is for new Ford Motor Company vehicle purchases only. If you are thinking about getting a new vehicle you might want to check out Ford. You can call 1-800-952-2248 for more information.

To save money on medical products and assisted living products try American Discount Medical. They claim their pricesare lower than retail prices.

Fun and Therapeutic Items

All of the following items were found at the Abilitations and Integrations web sites. Some can be seen through the catalogs only. For a catalog you can order on the website or by calling 1-800-622-0638.

The following were some of our favorite items:

Abilitations® CuddleLoop™
Provides A Swaddle Effect For Kids
Designed by a therapist, CuddleLoop provides a tight, snuggly, swaddle effect for all kids, but is highly effective for kids with sensory processing challenges. CuddleLoops can be used in seated or lying positions and can be knotted and wrapped to meet a particular need or comfort. Each loop is made of a stretchable LYCRA® material. You can place a knot or fastener (not included) at any point to tighten it as shown. Loops fit children from 6 months to approximately 8 years of age (18 lbs.-45 lbs.). $24.95 each

Tender Vibes™ Soothing Mattress
Some children respond to the calming input of vibration. This toddler- size mattress will lay on top of a twin bed mattress. It has an oversized on/off button for easy operation. It automatically turns off after 15 minutes. It uses 2 “D” cell batteries. The soothing mattress measures 28”W x 52”L. $171.99 each

Therapy Net
This net can be hung to provide linear movement total body extension and help make sitting muscles stronger. It’s large enough for children of all sizes and adults. It is designed to stretch and flex without binding or pinching. It can hold up to 200 pounds. Accessories are available. The accessory that I liked was the study board. $73.29 each (Accessories sold separately)

Chair Hugger
Soft pliable and adjustable LYCRA sheet adapts to nearly any chair and any child. It provides a gentle pressure that helps to calm a child while they sit in a chair. It is not intended as s restraint but as a support for short interval setting. One size fits all ages. $31.59 each

Textured Spoon
This spoon is textured to provide awareness inside the mouth to those who are learning to self feed or learning to recognize solid foods given by others. Both the top and bottom of the spoon is textured to provide stimulation. $4.99 each , $13.99 for set of 3, $52.99 for set of 12.