This was a blog post composed by CPRN Co-Founder Michele Shusterman. It is brought to you today in the same blog format that it was originally published in.
If you can find some time (easier said than done) to work with your child during mealtimes you can learn a lot about what may help her and where she is struggling for independence. Our occupational therapist has been instrumental in helping us find ways of supporting Maya comfortably and opening up her upper body, so that she may have as much free use of her arms and hands as possible to practice her self-feeding skills. That also means that it is up to us to ensure that she does practice, and that we take the time to observe her and report what we find to our OT.
Just a couple of weeks ago I received a message from our OT Julie who said that Maya seemed particularly tight in her upper body recently. She said she could not put her finger on what was different so she wanted me to think about it. I gave it a couple of days consideration. Sometimes you may not come up with anything. Our children’s bodies will often be different from day to day. However, if you can figure out what may be increasing tone (or any other changes) in your child’s body it is amazingly helpful. In this case, I realized it was Maya’s new feeding chair that was causing the problem.
We had started using it about the time the OT noticed the change in her range of motion. By Julie calling my attention to the problem, I realized that Maya had been struggling at home to grab her cup and pick up her food recently. I thought it was so strange. It turns out we had automatically begun using the top harness of the new seat. It was there, so why not use it? Her previous chair she outgrew did not have a top harness and she had always had free range of motion in her upper body. Now she was struggling to be successful at skills she had already mastered because she was “locked-in” (something I discuss in the Equipment section) her equipment and it was not serving her well.
This was leaving an “imprint” in her muscles which carried over throughout the day so that other skills were harder for her. Something so easily fixed could have perpetuated into a much larger problem if it were not for the diligence of our OT. Together we identified the source of the problem and eliminated it. This is why I want to impress upon you the importance of making time to observe your child and communicating with her therapists. I have often felt pressed for time, and the days and months were passing us by where we had structured limited opportunities for Maya to practice using utensils. It is easy to fall into the habit of feeding your child, or having her use her hands because it saves time. However, I realized I had to make the time for us to work together on this for her to be able to progress and gain more independence.
We are fortunate that Maya is outspoken and determined to try and master skills once she has a taste of success with whatever she is trying. Even so, we have to get her over the hump so that she is far enough along to want to continue trying on her own. Not all children are like this, so remember to try and make a few of your meal times throughout the week learning time. It is also a nice way to connect with each other and slow down. What you observe and share with your child’s OT can be used to make adjustments in her therapy program. The therapist may also come up with some ideas about feeding supplies, chairs etc., that can help support your child’s feeding skills.
Eating out can be a great way for everyone to have a change of scenery and break out of the routine. You don’t have to go somewhere fancy. In fact, I suggest choosing (when you have the choice) a comfortable, family oriented environment where the service is reliable and friendly.
- Try and go out to eat when you are not in a hurry. If your child already needs extra time eating, and you know attending to bathroom business takes more time, you have a recipe for stress for yourself and your child if you are pressed for time.
- Find a place you know is happy to accommodate your child. If things seem too hard from the beginning we leave and pick a different restaurant (if possible). I often have become stressed trying to figure out a place for Maya to sit where she can reach the table or use her wheelchair and tray and not be in the path of foot traffic. It is much easier if the staff is willing and happy to help you figure this out even if it means choosing another table.
- Let the host/hostess know what kind of table you need. For instance, we cannot have our child sit in a booth because she needs either a regular chair for us to place her portable booster or she needs to be able to eat in her wheelchair with her tray.
What to bring
Bibs,wipes, portable eating chair (if needed) or wheelchair/stroller, any special eating utensils supplies your child may need, flexible straws, a change of clothes, diaper bag, changing mat, something to drink for on the way, a tray, portable potty (if applicable) food grade scissors. If you don’t have a compatible tray for your child’s wheelchair and/or stroller you may want to look at this one: Taby tray
We discovered these utensils and they were a helpful transition for Maya since she has trouble curving her hands but could grip the utensils pretty well. http://www.easieeaters.com/
Bring a few wipeable books or simple toys for your child to play with (nothing to noisy so it won’t disturb others) while you are waiting for your food to arrive. I tried some wipeable placemats with a lip on the end to catch crumbs but it never seemed to work for us. I believe it was because my daughter wound up focusing on the placemat and playing with it rather than eating.
*If your child uses a feeding tube or your family is considering one, the Feeding Tube Awareness Foundation has put together this very helpful resource.
For more information, download our free cerebral palsy tool kit.