Fortunately, Emily does not have any feeding problems and the cerebral palsy does not affect her head control or any facial or digestive muscles. The most important aspect regarding feeding for Emily is proper positioning. Other special "equipment" that aids Emily in independent feeding include utensils, plates, bowls, and cups.
The first feeding aid we were introduced to was the feeder seat. This is a specially designed foam infant seat completely covered in vynle. The one Emily used was from Tumbleforms and was loaned to us by her Physical Therapist. The feeder seat fits in a regular high chair (most designs, anyway) and provides extra trunk and head support. The seat also boosts the baby up higher which was something our tiny Emily really needed in order to reach the tray properly.
Here is a link to a photo of Emily using the feeder seat in her high chair.
When Emily outgrew the feeder seat, we moved to using just the high chair but provided extra trunk support by placing rolled towels at her sides. Later, we learned that positioning a rolled towel under her elbow helped her maneveur her arms better. If I used a full-sized bath towel and rolled it just right, I could place one on each side of her so that they provided support for both her trunk and arms.
Here is a link to a photo of Emily in her high chair with rolled towels.
Camping seemed to present a bit of a problem. Naturally, less is more when you pack for camping -- but a child with special needs typically means a great deal more stuff to lug with you. When Jimbo was a baby, we simply took his baby walker and feed him in that rather than taking the high chair. Later, I picked up a clip on high chair at a garage sale and this worked great on the picnic table at the camp site. At first, the clip on high chair was out of the question for Emily, and the baby walker didn't provide her with enough support for eating either. So, we decided to take the high chair to the campgrounds with us -- after all, it does fold up nicely. It seemed a little odd ,at first, having an item that you solely associate with the kitchen, dining room, or a restuarant siting out under the pine trees, but it worked so well! And the high chair is made to clean easily so what does it matter if it gets dirt and pine needles on it? The food tastes so much better when we're camping and we tend to eat a lot more of it there, too. Emily should be able to enjoy eating at camp just like we do -- the toasted marshmallows, s'mores, and all that wonderful camp food!
Here is a link to a photo of Emily in her high chair out in the woods.
Then Emily's sitting balance improved enough so that the clip-on high chair, with rolled towels, worked good for her. But then she grew too tall and her legs, with the braces, would get stuck when we tried to get her out of the clip-on high chair. For a while, I would just have her sit on my lap and I would feed her while we were at camp. Now, Emily has her wheelchair and I suspect that will work fine while camping -- but the old pop-up camper bit the dust and we haven't purchased another one yet. (It's been a rainy summer anyway, so I guess we haven't missed anything this year.)
Although the high chair still worked well for Emily, I became concerned about age-appropriateness. The booster seat we used for Jimbo did not provide enough support for Emily so I went window shopping for booster seats. To my surprise, I found one that had high sides, a good seat belt with a safety strap that went between the child's legs, secured well to the chair you sat it on, and even came with a tray. (It's from Safety-First.) This booster chair, with rolled towels, worked very well for Emily and has some added bonuses, too. It is very portable and is great for road trips. Too many times we would go into a fast food place only to find all they had was the wooded high chairs and Emily's legs would not fit into the leg holes (or rather, they wouldn't come out of the leg holes without getting her legs and braces just right). It's great to take to the babysitter's, the grandparents', or visiting friends. Also, you can set the booster chair on the floor against a wall or sturdy piece of furniture and the child can play on the floor with other kids.
Here is a link to photos and descriptions of Emily in the booster chair.
Regular eating utensils and not fat enough for Emily to grasp well. We have been using the fat handled toddler utensils. The plastic curved spoon works the best for Emily, however the plastic forks are not good for stabbing food, like meats. The stainless steel toddler untensils with the built up handles also work well for Emily, however, she does do better with the spoon with the curved handle. I have yet to find one that is stainless steel with a curved built up handle. (If you have, please let me know!) At school, they use regular untensils and build up the handles with different things the Occupational Therapist has but such items are not readily available to parents (that I know of). Recently, we purchased handles that you can slip a regular utensil into but these are a bit too large for Emily right now. However, I did think they were worth getting and keeping one in my purse for times when we are caught without Emily's eating utensils. (We purchased them from Flaghouse, Inc.)
We also recently tried, and then purchased, the Scooper Bowl, Scooper Plate, and Doidy Nosey Cup. The Scooper Bowl and Scooper Plate both have a raised curved lip on one side to assist with getting food on the untensil. These work great for Emily and really increase her independence when eating. The Doidy Nosey Cup is a strange looking cup at first, but it works great for Emily! We have been using two-handled sippy cups. Since Emily is now five-years-old, I feel it is time we move on to something much more age-appropriate if at all possible. The Doidy Nosey Cup appears to sit at an angle as the sides are angled rather than perpendicular with the table. This allows for room around the nose for tipping the cup up for a drink. These cups are also two-handled. They are really cool and Emily loves them! (We purchased the Scooper Bowls, Scooper Plates, and Doidy Nosey Cups from Ableware by Maddak, Inc.)
Christmas and birthday shopping for Emily was certainly a chore. I became very frustrated for I greatly enjoyed shopping for Jimbo and felt it was unfair for me to dread shopping for Emily. Finding toys that were at the appropriate developmental level for her yet something that she could physically manipulate seemed nearly impossible. At first, the typical baby toys were suitable as they appropriately stimulate development, like the baby gyms. However, the toys beyond this initial stage seemed to focus on physical developmental skills, like telephone dials and working zippers and buttons. Emily was given a ton of stuffed animals because nobody knew what else to give her. Some people deserve credit because they did buy Emily toys keeping in mind what she would be able to do physically, but most often these fell way below her cognitive level. (i.e. She knows HOW to push a button but she just can't get her fingers to do it right if it is small.) As time went on, we identified that she loves books and music. This discovery made shopping for Emily much easier. And the really good news is that as she gets older, it is becoming increasily less difficult to shop for her. Aside from toys, we have found some ways of adapting at play time, too.
One day, out of the blue, memories of Jimbo climbing in the kitchen cupboards and emptying all the plastic dishes and pots and pans onto the floor came flooding back into my mind. Fondly, I remembered how frustrated my husband and I were that we had to pick up the same dishes numerous times a day. I looked at Emily and realized she had never had the opportunity of experiencing the joy of emptying the cupboards onto the kitchen floor. (I do not claim to know why kids find this so fascinating, just that I realize all kids love to do this at that particular developmental stage.) Needless to say, I helped Emily get into the cupboard and pull out all the dishes. She had a ball. A little later on, when she had developed the ability to roll, I would lay her on the kitchen floor and open the cupboard door to encourage her to roll to it. With some verbal prompting, she would roll over to the cupboard knowing that when she got there she could reach in and pull out the dishes. I was a bit worried about her doing this by laying on her back, especially when she starting reaching for the larger frying pans. But, the larger pans were too heavy for her to get out by herself so she was not able to hurt herself. Often, I would open the cupboard door and set Emily there in her Corner Chair so she could get the dishes out of the cupboard. I couldn't help but laugh at myself, remembering how desperately my husband and I couldn't wait for Jimbo to get passed the stage of emptying the cupboards and then I was helping Emily empty the cupboards.
More recently, the first day Emily had her new wheelchair she rolled herself into a big mud puddle in the driveway. Jimbo went running to help by pushing her out of the puddle. Emily began to scream and Jimbo came running over to me in the yard. He made his report and I looked over to the driveway. Sure enough, she had rolled herself right to the center of a hugh mud puddle and was scrapping the mud off her wheels with her hands. She looked at her hands and squeezed them shut. She opened her hands again and then shut them. She opened them once more, and then rubbed them on her pants. I chuckled and turned to Jimbo, "Thanks, Honey, for trying to help but you know what? Emily has never played in the mud before and I think it's time she plays in the mud if that's what she wants to do." I knew Jimbo needed a little more help understanding my reaction so we talked about why I find his clothes muddy so often. When he was satisfied, he went and played in the mud with his little sister. I stood and watched and laughed at myself -- a daughter with a brand new wheelchair, a son who tries to do what he thought was right, and a mom who tells her children to go play in the mud. What does this have to do with the art of adapting? Often what needs the most adapting is our way of looking at things.
One of my first projects in learning the art of adapting was to come up with a way for Emily to play on the floor with, or at least near, her big brother. I took the old wooden crate I kept blankets in and emptied it. Then, I placed the Feeder Seat (see above) in it. I sat Emily in the Feeder Seat and laid her busy board across the crate. I was very surprised to see how pleased Jimbo was to have his baby sister sitting on the floor with him. Emily relished in this experience as well. Shortly thereafter, we were introduced to the Corner Chair.
Here is a link to a photo of Emily in the Feeder Seat in the Crate on the floor.
This clever idea came from Emily's first Physical Therapist. Use a tractor trailor tire intertube for sitting support. We sat Emily in the center, sometimes adding pillows and/or towels, with toys. This supported her for sitting and allowed me to do chores inside or out. We took the intertube camping, too, as it allowed Emily to play in the dirt.
Here is a link to photos of Emily sitting in the tractor trailor tire intertube.
Cleaning Jimbo's bedroom is some chore. Emily, Jimbo and I were once again in his bedroom cleaning up the toy-covered floor. I had set Emily in her Corner Chair next to Jimbo's toy box so that she could help us by putting toys in the toybox. Instead, she started taking toys out of the toy box. When she had the toys out that she could reach, she began to fuss. I thought about how often I saw Jimbo at his toybox pulling toys out and realized this was something Emily had never done. I held Emily up at the toy box so that she could bend and reach in and pull toys out. Although I appreciated the physical therapy workout this was for her, as well as pure fun, I soon tired of being unproductive in the job I set out to accomplish. Caught between wanting my daughter to enjoy the pleasure of the toy box and wanting to get my son's room cleaned, I decided "If you can't play AT the toy box, then you play IN the toy box!" I pulled out enough toys from one corner to make room for Emily. She squealed with delight as I began to put her inside the toy box. She was small enough to fit sitting cross legged in the corner of Jimbo's toybox. Well, then, Jimbo had to get in the toy box too, and guess who cleaned his room that day? Still today, a special treat for Emily is to let her get inside Jimbo's toy box -- soon she will be too big.
Here is a link to a photo of Emily in Jimbo's toy box.
We believe it is important for our children to help with household chores. It may appear that Emily would not be able to help with such chores, however, the art of adapting applies to this area of our life as well as the other areas. Capitalizing on the fact that young children first WANT to help Mom and Dad, we began having Jimbo and Emily help around the house very early. Emily loves to help me sweep and mop the kitchen floor. She has participated in this chore in a variety of ways.
Here is a link to a photo of Emily sweeping by standing on a kitchen chair. She has also swept from her Gait Trainer, and now from her wheelchair.
Although Emily has helped with washing dishes and cleaning up the kitchen after meals, her main job is helping me with the laundry. She helps me sort the laundry from sitting in her Corner Chair or wheelchair. I set the laundry basket or clothes hamper beside her and she pulls the clothes out and piles them for me. While doing this she identifies what the item is, who it belongs to, the color, and what pile of laundry it goes with -- whites, colors, or darks. Emily loves to put the clothes in the dryer so I take them from the washer and hand them to her. She sits in her wheelchair next to the dryer, with the door open, and puts the wet clothes in the dryer. On nice days we hang the clothes on the clothes line. Emily's job is to hand me a designated number of clothes pins. Now, though, she's getting so she would rather hand me the wet clothes to hang. And when the clothes are dry, she puts the pins back in the basket and then helps me fold the clothes.
Emily also helps me vaccuum the rugs. She hangs on to the handle of the vaccuum cleaner while sitting in her wheelchair and I push the wheelchair. I set her next to the TV and windows and she washes them after I spray the cleaner on. Outside, she helps rake and pull weeds. As she gets older, we will be looking for ways for her to help out more. Although the amount of work Emily accomplishes may not equal the amount of work we can expect from Jimbo, we expect them each to exert equal amounts of EFFORT in helping out around the house.
For ideas of how to get household chores done, you may also want to see Baby Back Pack and Gait Trainer.
I still find myself faced with a dilema when running errands with the kids. Jimbo is certainly a big help now, but I still have to decide how to accomplish certain errands at times. Returning books to the library or stopping by to pay a bill is not as easy as it would seem. Both involve the decision of whether to get Emily out of the car seat, lug her along in one hand, while simply making a quick stop to accomplish the errand. We are very lucky to live in a safe rural area so I can leave the kids in the car for the quick minute it takes to drop books off at the library, for example. But days that involve a number of stops, I have to decide which ones I can group together so that it is worth getting the stroller out. When Emily was smaller, instead of using a stroller, I would use the Baby Back Pack. Keeping the Baby Back Pack and/or stroller in the trunk of the car is vital for us. We also keep a basket of toys in the middle of the back seat to keep the kids entertained when riding in the car and for the quick stops that I elect to leave the kids in the car. (When I do this, I always make sure I can park near a window of the building I am going in to.)
When Emily developed the ability to sit with little added support, she was able to sit in the kiddie seat of a shopping cart. But it wan't long before her legs were too long to easily get her back out of these seats. Once again, I asked myself, "Now what are we going to do?" Instantly, I spied the corner of the shopping cart in a different light. When I take a shower or bath, I set Emily in the corner of the bathroom with her legs crossed and she does a fine job sitting and playing. I now set Emily in the corner of the shopping cart and she is thrilled to ride along with the items we plan to purchase. I'm not sure what the next stage will be as I can't see myself pushing both her wheelchair and a shopping cart, but I am sure we will figure something out. (I welcome any hints or suggestions!)
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