When my husband and I were in grade school, there was no 504 or IEP for us. It was just a simple understanding between the principal and my parents that I needed some adaptations, which were very little due to just “having to work with it”. That was the 1970’s and 80’s where disability awareness was minimal at best. But, we survived with our one step stool and simple things like asking a friend to help. Fast forward to today with ADA laws and fear for lawsuits, our son has a nice adapted environment at school simply because we learned and are learning to make it easier and safer for him.
My own lessons learned as a parent:
- Ask for the equipment early in the year. Basically, each district is given an amount by the federal government each year. The pot is full in the fall semester, but once spring semester rolls around, it begins to deplete and you may need to wait until the following year to get it purchased.
- Research ideas for equipment by trying them in stores, going to friends houses, and getting input from other parents with children with dwarfism. Not all forms of dwarfism fit the same needs. For example, a product perfect for a child with achondroplasia, but not a child with diastrophic dysplasia. YOU should decide which equipment fits best for your child, not the OT, PT or teacher. They may suggest some ideas, especially an OT who has experience with other children who have gripping or orthopedic issues. Ultimately, you should be bringing them the picture, product link, or idea to help get the purchase through or get someone on the staff to build it (janitor, adaptive equipment dept., etc.). Otherwise, your child’s needs may not be met and you will wind up with a big $300 piece of equipment that will just sit there collecting dust. Another child could benefit from that low incidence funding.
- Come to school and see that it actually fits! Sometimes, a purchase will not go through or that the product won’t fit in a space as you might have expected. When this happens, you can take care of the problem right away by discussing it with the staff who purchased it and see if they can return it or re-purpose it to order something else. Sometimes nothing will fit that’s off-the-shelf. Custom builds are common for children with orthopedic impairments, so don’t hesitate to ask. If the District doesn’t have someone on staff to do the job, you can offer to find someone and outsource the work.
Here are some of the adaptive equipment our son has at school. Some of them have been with him since he was 2 years old at Early Intervention pre-school. You can find more information about Low Incidence Funding here.
Thank you for posting this! I was told we were asking for to much for my son, who only has a chair cushion, a step stool and a personal care aid to assist with transitioning up and down stairs, and during fire drills because he was being pushed down stairs and cannot move as quickly as the other students. I was in shock to hear someone felt I was hindering him by giving him access to his educational environment and providing teacher requested safety precautions . This puts my mind at ease and confirms that I have made smart choices on his behalf. Thank you!
My son with achon will be attending a private Christian school, which does not receive any government funding. In fact, they rely a lot upon volunteers to get by (we live in a small city/large town). Are there any other sources of receiving such equipment, maybe through the city?