Out Of Classroom Spoonsavers (Part 5-Helping Your EDS Child)

Today we will discuss tools and adaptations aka “spoonsavers” your child may want to use outside the classroom.

A rolling backpack and a pass to take it from class to class.

It is recommended to make sure the handle releases properly without a struggle, can be set at a height comfortable for your child, and that the wheels move well and are secure. (All problems we have experienced).

Some handles are a t-shape and seem to be harder for some children to grasp. There are many styles available and can be found at about any larger retail store. (I just thought the zebra print was fun for an example).

Having the wheeled backpack eases quite a bit of strain on your child’s shoulders, back, and wrists, saving their spoons for other activities.

An alternative lock. This can be a letter or digital lock.

Most schools offer combination locks and for students with weak wrists the holding and turning of these can be difficult. The digital or letter lock are easier to manage but can be a little harder to find. (Your school will require the final code when you add it to your student’s locker).

Two lockers.

This is to keep your child from being required to carry those heavy books up and down the stairs or long hallways. If there are 2 floors ask for one on each floor. If the halls are extremely long ask for one at each end and since you are keeping a set of books at home the wear and tear on your childs shoulders and wrist should be considerably reduced.

When possible schedule classes close together.

Example: My daughter has all her second floor classes before lunch and all her first floor classes after lunch. This minimizes her walking, time in the hallway to be jostled, and gives her a few more seconds to get her things together. Setting classes up this way is not always possible but can be taken into consideration at the start of the year when trying to plan a schedule.

Have an assigned classroom/lunch partner to help carry things, push the wheelchair, take notes, etc…

If your child doesnt have a full-time adult helper (and most don’t) address the occasional need for this and discuss who it should be (with the student and teacher). (The child your student picks may not be suitable for leaving class early to assist and the child your teacher picks may not be friendly or kind to your child.)

Address PE and recess activities. Some may be okay, others may not be allowed. Some may just need less repetition such as one lap instead of 10, walk instead of run. Check with your doctor and physical therapist for a list. Some children may simply need to be exempt from PE.

Limited exposure to heat or cold.

(What is ok for the average students leaves my daughter in pain or so weak she can hardly walk.)

Our 504 reads that this decision is made at the child’s disgression and it is her responsibility to remind the teacher. For older students this usually only comes into play during pep rallies, field trips or special occasions. This is when my daughter can choose what is very important to her and know (at age 14) she will be weak from later.

(A medical note will probably be needed).

Freedom to call home (supervised) for braces, medications, joint reset, etc…

Decides who and when to call home during an injury or illness.

Many times the school has called because of a sublaxation or dislocation my daughter was happy to reset and continue her day, other times they have not called until my child was extremely sick and tried to pass out even though he had been to the office and suggested they call and they had been warned how quickly he would spike a temp and collapse.

Now, my children get to make the call. I usually then go to the school and assess the situation or talk it out, make an appointment as needed. This only works if your child wants to be at school and is old enough to make wise choices.

Find and name a mentor.

A trusted adult the child chooses to talk to.

This is not in our 504 but we always have a trusted teacher in the building the child can go to if they are feeling overwhelmed, bullied, pressured by another teacher, or just need to let things out. School counselors and nurses are great but they are not always the person your child wants to talk to and Lord knows our children have enough stress dealing with pain and making it through a day without the pressures that come with being a kid in school.

The opportunity to lay flat in the nurses station if they need a minute to regain their strength, fight pain or a just feeling weak. My oldest will often stretch out during lunch to ease the pain in her spine.

Keep labeled, flexible reusable ice packs and towels on hand at the school for swelling and aches as they develop. Our school gives you ice in a bread bag. It is hard to manuever, springs a leak, melts, and takes forever to find someone to get. We keep the towels in her locker and the ice pack in the nurses fridge and she pops in the office when they are needed. (We use the ones sent home from hospital injuries).

Use of an upper or lower locker or backpack hook for younger children depending on your child’s health and abilities. My daughters are tall so bending is painful but in a wheelchair they cannot reach the top locker so each year it is based on their health.

Use of elevator, crutches, slings, braces, or wheelchair without a doctor’s note for every injury.

Extra time between classes.

This is only a portion of the non-classroom spoonsavers available. I know we only have the limited experience of our three children.

Please share any additional suggestions you may have in the comments below.

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We at The Zippy Zebra just want to share ways to make everyone’s life a little less painful and a little more hopeful each day!

Tags: EDS CHildren, EDS CHildren in school, How to help my EDS child, PE allowances, Spoonsaver Locks, Wheeled Backpack

Helping Your Unusual Child | TinaMiller | October 9, 2014 11:10 am