Physical therapy plays a crucial role in helping a child who is diagnosed with Down syndrome (DS) reach their highest potential. What that therapy looks like through a child’s life changes as he/she transitions from newborn to teenager. Hypotonia, weakness, cardiac and respiratory issues are some of the challenges a PT will address.
0 – 24 months: The physical therapist (PT) is one of the first healthcare professionals to work with a parent and their child to help build a strong foundation of strength and movement. Depending on the medical complications a child faces, the PT works regularly with the child to build strong muscles so he/she doesn’t develop compensation that can affect their abilities later.
The parents or caregivers will have activities to work on daily to help their child reach gross motor milestones. The child may need special braces for their feet to improve alignment so that muscles can maintain length to function efficiently.
Compression garments such as a SPIO, Benik or an abdominal binder, may be considered to aide postural alignment and respiratory function. Aquatic therapy can be beneficial if a child enjoys the water. This gives him/her an opportunity to be challenged in new and fun ways, while also building strong swimming skills and an enjoyment of water for future exercising.
2 years – 5 years: During the preschool years physical therapy continues to address higher level gross motor skills. It may be appropriate for a child to be involved in group therapy sessions where peers motivate each other, along with providing social and communication opportunities.
5 – 10 years: Throughout these years, a child involved in community-based programs could seek PT consultations. Some children may enjoy a summer PT group to build strength and confidence such as our rock climbing group. Biking can also be a great opportunity for fitness and socializing. There are several “learn to bike” programs in the community and a PT can help a child develop this skill. Many children become involved in swimming and this becomes their life long fitness.
Teenage years: Encourage physical fitness, which is important for any teenager or young adult. Hopefully as the child faces the challenges of being a teenager, they have confidence in their abilities and can continue to be a part of a sport community, like a swim team, running group, or special rec team. The child may need to check in with their PT a bit more to update home programs, as growth may affect their posture. While braces may not be needed anymore, foot inserts may be necessary to support his/her feet in the best possible position.
Most importantly, set high expectations and enjoy all the gifts children bring to families!
Halloween is right around the corner! Most kids can’t wait to put on their costumes and make their way through the neighborhood. No child wants to be left out of the fun of trick or treating or holiday parties. Unfortunately for some children this often happen.s However, with some planning and preparation, children with sensory issues or other special needs, don’t have to be left out and can enjoy this exciting time of year.
Create a schedule for special activities. Tailor the schedule to your child’s needs. Whether it’s a picture schedule or written schedule, using a schedule will help your child be able to anticipate what is coming up and feel calmer. Discuss the schedule regularly and provide information for each transition. Sometimes just knowing what’s next can help children with extra needs feel less anxiety.
Try using a social story that includes a pictures for your children to help visualize the day and better predict what will happen. You can click here for some sample stories.
Try having a code word your child can use if he or she feels overwhelmed and needs a break. When your child uses the code word, help them leave the situation for a few moments and discuss coping skills. Again, giving children some control during activities that may be overstimulating will reduce anxiety and enhance the fun.
Decorations like fake cobwebs, scary jack-o-lanterns, hanging ghosts, and mist from fog machines can bother kids with special needs.
Consider taking your child to explore the Halloween section of a local big-box store. You can help your child get used to the various sounds and sights by pressing the different buttons on the various machines. You can also help them get used to the different sensations by touching the variety of decorations. This can be helpful to figure out which ones to avoid during the festivities.
If your child doesn’t like the smell or slimy texture of pumpkin insides, there are a ton of different ways to decorate pumpkins. You can use paint or permanent markers and stickers to decorate your pumpkins. Pinterest has a ton of ideas like using playdough, coloring with crayons, or using decorations.
Costumes can be really tricky for our kids. Remember, costumes don’t have to be expensive to be fun and enjoyable for the holiday. When trying to decide on the just right costume, it is important to think not only about the theme but also about how it will feel, fit, and even smell.
When you find the just right costume, some kids will benefit from washing it a few times to soften the fabric before wearing it the first time.
Some children might benefit from practicing wearing their costume before the big deal. This will allow your child to problem solve anything that doesn’t feel comfortable. You should practice walking and sitting while wearing the costume.
It might be helpful to wear comfortable clothes or pajamas under the costume.
Don’t overlook simple costume ideas. With pinterest now there are a ton of creative ideas that don’t have to involve store bought costumes. You can involve the whole family with themed costumes (this year my family is doing Rock, Paper, Scissors with our regular clothes and few adaptations).
For trick-or-treaters who use a wheelchair or need help walking long distances, you can get creative and decorate their equipment or wagon.
For parents who want help in designing or making costumes, there are several resources in bookstores and on the web. Some sites, such as Family Education, provide costume making instructions. Also, organizations, such as the Muscular Dystrophy Association (MDA) and The Bridge School, offer tips and examples of costume ideas. Charities, like Costumes for Kids, collects used costumes and offers them to physically disabled kids too.
Trick or Treating Tips
Trick-or-treating can also be hard. Noisy crowds of kids and flashing decorations. Walking around the neighborhood. Walking at doors. Talking to unfamiliar people. Food sensitivities. Food allergies.
Do you know about the teal pumpkin? The Teal Pumpkin Project encourages people to raise awareness of food allergies and promotes inclusion of all children by offering an alternative treat for whom candy is not an option.
Go out at dusk or before the streets get very dark and crowded.
Only treat or trick at houses you know.
Map out and practice the route with your child ahead of time so it feels familiar.
Pull your child in a wagon or let your older child ride a bike to avoid having other kids crowd/bump into him or her.
Program a special Halloween message into a communication device for kids who need help with language.
Have some favorite calm down activities or toys ready in case it gets too much for your child.
Most parents know it is important for children to eat a balanced diet. What exactly does a balanced diet mean? Generally, it means eating a variety of foods and getting enough of each food group. The five food groups are fruits, vegetables, grains, protein foods, and dairy. Although every food group is important, it seems as though protein foods and vegetables receive the most attention. You may be wondering why these two food groups are so important, how much of each is needed, and how to get your child to meet the recommendations. We will cover all this, but let’s start with how much food your child needs.
Protein is a key nutrient for everyone from growing babies to elite athletes. It is necessary to build, maintain, and repair tissue. We need protein to form healthy bones, muscles, cartilage, skin, and nails, as well as to make enzymes, hormones, and other chemicals. Protein foods are also important sources of nutrients such as iron, niacin, vitamin B12, vitamin B6, riboflavin, selenium, choline, phosphorous, zinc, copper, vitamin D, and Vitamin E. These vitamins and minerals offer a myriad of benefits to a growing child.
A common misconception is that protein is only found in animal-based foods, like meat. However, protein can also come from plant-based foods, like beans (example: pinto, black, kidney beans) and soy products (example: tofu, tempeh, edamame). The protein food group includes meat, poultry, seafood, beans, peas, eggs, processed soy products, nuts, and seeds. Dairy foods such as milk, cheese, yogurt, and cottage cheese will also provide your child with protein. Your child’s protein needs vary based on age, sex, and activity level. (Please see Table 1 above for recommended intake amounts.)
A serving from the protein food group, also referred to as an ounce-equivalent, is 1 ounce of meat, poultry, or fish, 1 egg, ¼ cup cooked beans or peas, ¼ cup tofu, 1 ounce of tempeh, 1 falafel patty, 2 tablespoons of hummus, 1 tablespoon of peanut butter, or ½ ounce of nuts or seeds. Please see Table 2 for common protein food portions.
Table 2. Common Portions and Servings of Protein Foods*
Common Portion and Servings
1 small steak = 3.5 to 4 servings
1 small hamburger = 2 to 3 servings
1 small chicken breast half = 3 servings
½ Cornish game hen = 4 servings
1 can of tuna, drained = 3 to 4 servings
1 salmon steak = 4 to 6 servings
A couple examples of convenient and kid-friendly protein foods are hamburger patties (examples: McDonald’s, White Castle [yes, fast food is okay]), fish sticks, chicken nuggets, Boca vegan burgers, and milk (examples: cow’s milk, Ripple milk, hemp milk). If your child prefers to drink rather than eat, try supplementing with a nutritious drink (examples: Kate Farms, Vega, Orgain, PediaSure). If your child does not eat solid foods, you can puree meat, poultry, seafood, and tofu, mash beans and peas, and provide foods like creamy nut butters, hummus, blended soups, and smooth yogurt. If your child relies on formula given through a feeding tube or drinking a supplement for most or all of his/her daily nutrition intake, s/he may be getting enough protein if s/he is consuming enough. Make sure to speak to a registered dietitian if you have any concerns about your child meeting his/her protein needs.
QUICK RECIPE: Black Bean Quesadilla*
¾ cup pico de gallo
1 can (15.5 oz) black beans (great protein source!)
½ cup shredded Colby and Monterey Jack cheese
2 tablespoons chopped cilantro
4 eight-inch flour tortillas
½ teaspoon olive oil
1. Using small-hole strainer, drain liquid from Pico de Gallo; discard liquid. Transfer leftover tomato mixture to medium bowl. Mix in black beans, cheese and cilantro until combined.
2. Divide black bean mixture evenly over half of each tortilla (about ½ cup each). Fold tortillas in half.
3. Heat large griddle or skillet over medium-high heat. Brush with oil. Place filled tortillas on griddle. Cook, carefully flipping once, until tortillas are golden brown and crisp and cheese filling melts, about 5 minutes. Cut quesadillas into wedges. Makes 8 servings.
Optional: For additional protein, add chicken or your favorite meat!
Vegetables are full of nutrients including dietary fiber, potassium, iron, vitamin A, vitamin C, vitamin K, copper, magnesium, vitamin E, vitamin B6, manganese, thiamin, niacin, and choline. These nutrients can help your child build healthy bones, heal cuts and wounds, protect against infection, support heart health, promote healthy aging, and maintain healthy eyes, skin, teeth and gums.
The vegetable food group is made up of vegetables and 100% vegetable juice. Vegetables come in a variety of forms to fit any diet. They can be raw, cooked, fresh, frozen, canned, dried/dehydrated, whole, sliced, mashed, pureed, or juiced. Please see Table 1 above for recommended intake amounts.
A serving, or cup-equivalent, from the vegetable group can be 1 cup of raw or cooked vegetables, 1 cup of vegetable juice, or 2 cups of raw leafy greens. There are some great brands out there that sell kid-friendly, veggie-containing foods. Two examples of brands are Dr. Praeger’s Purely Sensible Foods and Happy Family. Dr. Praeger’s line of foods includes a variety of “Puffs”, “Cakes”, and “Littles” (these are shaped liked stars, dinosaurs, and bears!) that are made with ingredients like broccoli, spinach, kale, and carrots. Happy Family sells everything from bars, to squeeze pouches, to puffs (some of these are also shaped like dinos!). These foods can have veggies like tomato, kale, spinach, and carrots. Their foods are appropriate for all ages, from infants to adults.
You can also try incorporating vegetables into other foods at home. Combine leafy green vegetables, celery, carrots, or beets with fruit to make a juice or smoothie. Store-bought, single serving vegetable juices and smoothies (example: Bolthouse Farms or Naked Juice) are also an option if you are on-the-go. You can also try blending pureed cooked cauliflower in mashed potatoes and mixing pureed cooked sweet potato or carrot into a cheese or pasta sauce. Blending cooked pumpkin, carrot, squash, or sweet potato into a tomato or vegetable soup can also increase your child’s vegetable intake. These ideas are also appropriate for children who do not eat solids.
If your child relies on a tube feeding formula or an oral supplement, s/he may be meeting all vitamin and mineral needs if s/he is consuming enough. If not, your child may benefit from a multivitamin. A registered dietitian can help you plan on the best way to get more nutrients into your child. If you are interested in adding blended vegetables to your child’s tube feeding regimen, a registered dietitian can also help you get started with blenderized tube feedings.
QUICK RECIPE: Pineapple and Spinach Smoothie*
2 cups pineapple
1 cup baby spinach (great way to consume veggies!)
1 cup unsweetened almond milk
1 cup ice
¼ tsp ground cinnamon
Combinepineapple, spinach, banana, almond milk, ice and cinnamon in blender. Cover; blend until smooth. Makes 2 servings.