General Care

Bathing

Daniel has no special bathing requirements except that he needs to be supervised carefully in the tub so he doesn't stand and slip, and so he does not turn on the hot water (just as you would supervise any toddler). He generally needs to be bathed two to three times a week.

Teeth

Daniel needs someone to brush his teeth for him each night just before he is put to bed. We use a minuscule amount of toothpaste on the brush. The adult first brushes Daniel's teeth (using hand-over-hand technique if Daniel allows it), then lets Daniel try to brush his own teeth. He swallows the water-he hasn't learned to spit it out yet. (That's why we use so little toothpaste. He'd swallow it, ingesting fluoride.) At times, he seems to understand he should spit out the water, but very inconsistently. Because Daniel snores, he has a tendency for plaque buildup on his lower front teeth, so brush that area more aggressively.

Pay attention to the appearance of any oral lesions or gingival bleeding, since it is an early warning sign for leukemia.

Hair

Daniel requires someone to groom his hair each morning. We wet the brush and brush his hair straight back (spiking it if it's short enough), using hair spray or gel to help it stay in place.

Nails

Daniel requires someone to cut his nails with a child's nail clippers about once every two weeks. Daniel is quite compliant about this.

Nose

Daniel sometimes suffers from nasal congestion, especially in the winter, which we treated in the past by enforcing a diet very low in milk products. We're more liberal in Daniel's consumption of milk products now, but if he's constantly congested, the milk products should be reduced again. You can also give him a chewable children's Vitamin C tablet each morning that his nose is runny. When Daniel is especially congested, he seems to benefit from a humidifier in his room at night, and can be given a Children's Sudafed tablet or another over-the-counter children's decongestant (especially before bed to help him sleep).

Daniel is starting to understand that he should wipe his runny nose with a tissue. He usually does it if handed a tissue and directed, but sometimes he needs his nose wiped for him. He's also starting to understand how to blow his nose if you ask him while you hold the tissue in front of his nose.

Clothing

Daniel is starting to understand how to dress and undress himself. When undressing, he can remove his socks, pull on his sleeves to remove his arms, and pull down his pants (sometimes only with help). When dressing, he can pull a shirt down over his head (if you position it on his head) and help pull his pants up if you pull them over his feet. He also can stand up or sit down if directed during dressing.

Daniel has no special requirements for his clothing, except pants with stretch bands help him pull his pants up and down.

Shoes

Daniel cannot put his shoes on by himself, but he can move his feet to help his caregiver put them on and he can fasten the Velcro strips. Daniel can also unfasten the Velcro strips on his sneakers and remove them from his feet.

When he wears orthotics, he usually wears the same pair of sneakers each day because it's easier to leave them in than to transfer them between different shoes. Because of his orthotics, he needs to wear a larger shoe size than he normally would. The Wyckoff Stride-Rite is especially good for getting the proper fit for orthotics. (They let us rip out the regular insoles and place the orthotics in when Daniel tries on new shoes.)

Drooling

Daniel doesn't have a drooling problem, but once in a while, when he's especially active, he develops a bit of foam around his mouth. Just prompt him to wipe himself (or wipe it yourself).

Feeding

Daniel can usually feed himself without assistance, but sometimes needs some help. Daniel generally knows which foods he can eat with his fingers and which require a spoon or a fork. Daniel uses adult spoons and forks, but does not use a knife yet. Daniel's fine motor skills, while improving, once in a great while require the caregiver to stab foods with his fork (or, better yet, help him stab them hand-over-hand). Daniel can stab almost all foods himself, however.

Daniel needs all of his food cut into small pieces. He sometimes ignores pieces he thinks are too big. At times, he'll even say he's "all done" when he just needs his food cut smaller, but he's getting better at saying "I need help" instead. He needs some foods cut that you might not expect, such as cake or hot dogs. If you'd typically cut something in half for a child, Daniel might like it in quarters. Daniel also needs help with ice cream-you can mix it a bit or let it start to soften so he can handle it more easily. Daniel generally has a large breakfast between 7 am and 8 am, lunch between 11:30 and 12:30, and dinner between 5 and 6 PM. Daniel usually has a snack around 3:30 PM. Daniel enjoys most of the school lunches offered.

Daniel sits in a regular adult chair for all meals. Daniel knows he must bring his plate and cup into the kitchen when he is finished. Remind him if he forgets.

Drinking

Daniel drinks from an open cup without handles at all times. At home, he knows how to fill the bathroom cup with water without assistance. He also knows how to drink from a sports bottle. He requires help in opening some of the sports bottles, but can manage others himself.

Devices or Special Equipment

Daniel doesn't use any special devices or equipment.

Medications

Daniel receives a children's chewable fluoridated multivitamin each day (Dr. Sherman has the prescription). Daniel has no other regular medication.

When Daniel's nose is runny, you can give a children's chewable 100-milligram Vitamin C tablet in the morning. If he is congested over one day, he can be given Children's Sudafed or another over-the-counter decongestant for children.

When administering Children's Sudafed, Tylenol, or another over-the-counter medication, Daniel needs the dosage measured based on his current weight (about 50 pounds), not his age (because he is so small for his age). Ask Dr. Sherman if you have questions about this. Daniel obviously requires a caregiver to purchase and administer the medication to him.

Diet

Adults with Down syndrome tend to be overweight, but Daniel shows no signs of that.

Daniel is offered the same food as the rest of the family. It is critical to add fruits and vegetables to his food to assure a healthy diet. People with Down syndrome have a critical need for antioxidants, which are found in fruits and vegetables. Antioxidants are important for everyone for fighting cancer and helping our immune systems, but for people with Down syndrome, they actually help mental function as well. Some evidence shows that antioxidants improve cognition in children with Down syndrome and help prevent Alzheimer's disease (to which adults with Down syndrome are prone).

Daniel should get at least five servings of antioxidants each day (five servings of fruits and vegetables). When you're counting, only count juice once, no matter how many servings you give. Try to serve as many different fruits and vegetables as you can each day. It's easy to mince or puree fruits and vegetables using the food processor if you don't think you're getting enough into the diet through normal means.

Daniel loves fruit, especially bananas, apples, pears, kiwis, melons, and almost any canned fruit. He will happily eat vegetables if they are lightly steamed and cut into small pieces. He especially loves broccoli. He sometimes eats salad with Marie's salad dressing. Breakfast is usually Daniel's heaviest meal of the day, and it is important to add some fruits or vegetables into his breakfast. Daniel expects that his scrambled eggs will contain spinach or some other green leafy vegetable or that his pancakes will be loaded with cranberries or blueberries. Daniel also likes oatmeal, waffles, or French toast for breakfast, with fruit on the side. Daniel loves any kind of carbohydrates. Daniel eats bagels, bread, or toast with jelly, butter, or cream cheese. He likes any kind of pasta, including macaroni and cheese. He also likes most kinds of cereal. He loves ice cream for snack. Cream cheese and jelly sandwiches and hot dogs are two favorite lunches. He will sometimes be persuaded to eat a tuna sandwich. Introducing new or unpopular foods when he is especially hungry is a good idea.

Daniel (and Derek as well) seem to have sleep problems from the caffeine found in chocolate. We have found that they can manage chocolate served early in the day (before 1 pm) but even small amounts (like chocolate chips in a cookie) may cause night waking (which leads to grown-up waking). Elizabeth and Annette suffer no such ill effects.

Daniel usually drinks water or orange juice in the morning, and drinks milk or water the rest of the day. When he does drink cow's milk, it is preferable to use organic cow's milk, so that his immune system is not exposed to any unnecessary antibiotics-this helps the antibiotics he must receive for infections work better. Although Daniel has been very healthy, many children with Down syndrome get frequent infections.

Safety Concerns

Daniel's cognitive safety level is around two years, so we must provide for his safety as you would for a toddler. His daily environment needs to be baby-proofed so he cannot reach anything breakable or dangerous (such as electric fans, glass, household chemicals, or electrical outlets). The house's hot water heater should be set below 130 degrees to reduce the chance of scalding. Daniel cannot be left unattended while bathing (we sometimes give him showers because they are faster). Daniel navigates the stairs well, so there is no need for safety gates. At one time, Daniel occasionally hurled toys and other small objects around the room, presenting a hazard for others, but he has dramatically reduced this behavior in the past few years. Although Daniel is usually quite gentle, he does bear extra watching around any child two and younger.

You must take measures each night just in case Daniel (or even Derek) leaves his bedroom before adults rise in the morning. To guard against something very dangerous happening, each night before we go to bed we take some additional precautions:

• We make sure all doors are locked so they can't leave the house.
• We remove the knobs from the gas stove (so they can't turn them on).
• We set the childproof lock on the microwave oven. (Both Daniel and Derek know how to open the door and press the buttons, so they could put something flammable inside and start a fire.)
• We remove breakable things from the kitchen counter.

When Daniel is outside a baby-proofed environment, he must be watched constantly to ensure that he does not injure himself or others, just as you would watch any toddler. Daniel sometimes wanders off when left unattended. He can do this quite quickly with no apparent fear-once he sauntered into a neighbor's house uninvited. He must be monitored closely in public places, such as a park-he can take off in a hurry. In case he gets lost, Daniel should always wear his identification tag that has his name and diagnosis on it. Daniel knows it as his "dog tag."

Daniel normally knows that he must stay on the sidewalk and not venture into the street, but he forgets occasionally, so he must be watched carefully or he must have his hand held by an adult. He must always have his hand held when walking in a dangerous place, such as crossing the street or in a parking lot. If Daniel does begin to wander off, a stern "NO, DANIEL, NO!" will usually bring him to attention, but not always. Because of this danger, we've gotten handicapped plates and a handicapped license for Daniel so that we do not have to walk Daniel long distances through parking lots.

Daniel has outgrown the baby swings at playgrounds and is permitted to use the "big kid" swings with close supervision, although he shows little interest in it yet. He must not swing high, however, because he sometimes forgets to hold on momentarily. If you do coax him to swing, remind him constantly to hold on with both hands.

When Daniel is traveling by car, we buckle him with a regular seat belt, although he can still use a booster seat designed for children within his weight range. Daniel does not know how to buckle himself, but he can unbuckle-a few times he's unbuckled while the car was moving, so be alert. We are not currently using the free school bus service that Daniel is eligible for, but if Daniel does use a bus, he must use a seat belt. While the aides that accompany the children on the bus are responsible for strapping him in properly, our experience is that they are typically untrained and lowly paid. We usually check their work on the way to school. If you decide to have Daniel use the afternoon bus, see if the teachers will check his seat belt before he leaves the school. The teachers, however, are not legally responsible for proper seat belt usage (the bus company is), so it is wise to make yourself known to the bus company to reduce sloppiness.