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Life with children is busy.

There always seems to be activities, school functions, sports, church activities, etc. Adding in a child with special needs often makes things a little more interesting.

For starters, getting ready in the morning in our house looks a little different. Getting a growing special needs child dressed takes more time. He needs a lot of help getting his clothing on, and then he also needs braces on his feet and special shoes. He also has lower nerve sensation to his bowel and bladder, so it takes him a lot longer to go potty on the toilet. He needs help brushing his teeth, and due to his oral aversions and easy vomiting, we have to be sensitive to his cues that he needs a break from something being shoved in his mouth.

We also have to make sure all of his food is prepped and ready for however long we are going to be gone. This means measuring, blending, and storing all of his food. The diaper bag has to be packed for both his and his little brother's diapers, extra clothes for everyone in case there is a vomiting episode, emergency feeding tube supplies, an emergency feeding tube in case the one he has breaks or gets pulled out, and a care kit in case his tube becomes clogged. We also have to gather all equipment we need to bring with us.

Once we are packed and ready to go, it is time to physically get everything into the car. We have learned to say out loud what we are taking down so nothing gets forgotten. There have been multiple times when we are half way to our destination only to realize we forgot the diaper bag, or forgot the feeding tube!

When our son was little, we took off for a day trip for a family funeral. Our first stop was an hour away. We decided to feed our son while we were stopped and discovered we forgot his feeding tube! Returning home meant we would miss the first part of the funeral. Not returning home meant we would not be able to feed our child. Thankfully, a family member was just getting ready to leave town and was able to run by our house. We now always keep extras in the car if possible so even if something is forgotten we have a backup!

Once we get to where we are going, we choose how important each item is and whether or not we need it inside. Our diaper bag has evolved so much over the years as the medical supplies and our own knowledge has changed. In the beginning, we needed a bag that could hold oxygen supplies. During chemo, we needed a bag that could hold plenty of diapers and multiple changes of clothes to combat the vomiting and diarrhea chemo caused. We now have a nice backpack; it's big enough to hold a few emergency diapers, clothes, and all his feeding needs.

When we go places, we assess where we want to be in the building. This also helps us decide if we need a walker, a stroller, or a baby carrier. At movies, we like being close to the door, close to the screen, and far away from others. Our son doesn't tolerate sitting for long periods, so he needs to stand. The handicap seats at a theater are typically towards the front, and we need one to park his stroller.

We spend a lot of time having him sit, stand, walk, and be social with others if the environment allows.

And just like any child, every place is a new play environment. We talk about new smells, encourage him to listen, respond, and play. We use each place as a way to incorporate his therapy goals, improve his social skills, and educate the public about special needs children.

In all honesty, he may require more "stuff", but he is typically the best behaved child in any restaurant, any movie, and every store. He loves new experiences and being around people.

Going to bed isn't much different than our other children. He loves to snuggle, read books, and rock to sleep. The beginnings of our days may be chaotic, but they always end with a peacefully sleeping kid.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

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