Haiti Thoughts

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How is it possible that I can be blessed with a roof over my head, relatively healthy children, parents and siblings? Why was I so lucky to come into this world never worrying that I’d have shoes on my feet and clean water to drink? What did I do to deserve to be able to make simple choices all day long based on what I WANT not on what I may or may not NEED?

These are some of the many questions that ran through my head during my time volunteering in Haiti with STAND (Sustainable Therapy and New Development) The Haiti Project, a nonprofit organization, dedicated to establishing permanent access to orthopedic rehabilitative services for Haitian adults and children in need through direct patient care and clinical training of its citizens. I landed in Haiti with 20 other STAND volunteers from around the US. We were primarily PTs but a nurse and a physician assistant were with us as well. As soon as we passed through customs in the airport there was a small band playing music on empty buckets and pans – what a welcome! The Haitian people are lovely.

We piled into a bus to begin our journey to Port de Paix, told that it could take anywhere from 6-16 hours. The road was paved for the first half of the trip, but for the second it was not. There didn’t appear to be any rules of the road. Our bus driver would quickly accelerate passing overloaded motos (mopeds) carrying up to four people (no helmets, I might add!), trucks packed tightly full of 20-30 people, other buses and pedestrians. There were vehicles driving in both directions on all sides of the road. To my American eyes, it appeared to be chaos. I later learned from the adult therapists that a large number of the patients they treated came in complaining of pain/injury from moto or vehicle accidents.

The condition of the unpaved road is indescribable. I have been on plenty of dirt roads in our country in VT, CO and AK. I have never seen roads like these. There were huge (2-3’ in diameter) boulders obstructing the roads. There were large gulleys in the middle of the roads. There was evidence that at some point road construction had been started, but nothing was complete.

The view from the bus windows: women carrying, by estimate, 40-50 pound bags of potatoes on their heads, children bathing in the river, babies squeezed in between adults on overcrowded motos, children walking donkeys loaded down with fruits and vegetables, goats with triangular wooden frames around their necks. En route to the clinic we got a flat tire, a noticeably common occurrence.

We arrived at the STAND clinic in Port de Paix at 9pm. Dinner was waiting. For me dinner, and lunch and breakfast, consisted of fried plantains, fried breadfruit and fried bread with Haitian peanut butter. I set up my mattress outside on the balcony with mosquito netting hanging from above. The waves crashing below me, I slept on and off through the night. When I woke up the next morning, I could not believe the view. It was a million dollar scene.

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In the clinic, I saw children with diagnoses that are obsolete in the United States because of vitamins. Rickets, for example, is a disease where your bones become soft due to lack of Vitamin D and Calcium. This results in bowed legs. I saw children with seizure disorders who are not on medication having five-six uncontrolled seizures daily. I saw children with Zika virus resulting in microcephaly. I saw children with cerebral palsy who were dependent for all daily activities.

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For these children, we built standers, walkers and chairs out of PVC pipes, foam and duct tape. We modified old orthotics we brought from home to fit these children’s feet as best we could. We taught families stretches and strengthening activities. We gave families shoes for their children so their feet would be protected and supported. We used donated Bumbo chairs so that infants who could not sit independently were safe and well positioned when they were not being held. We fabricated wrist splints.

There is an obvious huge difference between healthcare in the States and Haiti. In the Haitian system, only the wealthiest of families can afford healthcare. The way I saw this play out is that a child, for example, with microcephaly, in the States would be followed by MDs, PTs, OTs, STs and other medical and developmental professionals from birth. However, in Haiti, this is not the case. A child with a severe medical condition and disability is not given proper care early on, so his/her growth and development is stunted more than a similar child with the same diagnosis here in the States.

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The question I keep being asked since back in the states is “What kind of impact do you think you really had on these people?” And, that was exactly what I was most reluctant about prior to my trip. To that, I answer, “I know that I had an impact on these families and these children”. I saw so many smiles after children spent time in our clinic. There were so many simple, small things that I did while I was in Haiti that were so impactful.

I am so thankful for my husband, Jeff, and our children, Harper and Talia, who managed everything while I was away, and for my extended family and friends who helped as well. I am grateful for the support I received from my own family, Pediatric Therapeutics families, my friends, and colleagues. I am grateful for the choices I have every day of my life. I am grateful for my health, the clothes on my body and the sound roof over my head. I am grateful for the extremely patient Haitian children and their parents who allowed me to help them.

Miriam Cohen, PT, DPT, PCS

Does Feeding Therapy Really Work?

Mealtimes with my picky eater can be so stressful.  Does feeding therapy really work?

The short answer is YES! The longer answer is still yes, but it takes time, patience and a consistent approach. Trying new foods is a process and for many children it is fraught with anxiety, uncomfortable sensations, mixed expectations and feelings of a lack of control. At Pediatric Therapeutics, we combine several methods and techniques to assist our clients with gaining confidence, oralmotor skill and tolerance for new foods. Each child is different and so is their treatment plan.

Depending upon the comprehensive history taken and specific needs discovered, we can begin to formulate an approach where the child feels safe FIRST and then we can begin the process of setting the expectation, specific treatment goals and ways to follow through at home. Parent involvement is critical and paramount to success outside of the treatment room. How a child “works” in therapy and bonds with their therapist is different than what typically happens at home. The first and obviously most important bond around food occurs with parents and their children. It is an emotional experience for parents and when mealtimes become less pleasurable and more stressful, the emotions run even higher. Our children sense the importance of this so consist use of language, consistent expectations and consistent follow through are critical to the success of any feeding therapy session, whether inpatient or outpatient, daily, weekly or just periodically.

As with any intervention, progress isn’t always linear. The trajectory changes. Sometimes we need other professional guidance in addition to feeding therapy. There is no magic bullet but there is plenty of hope, plenty of tools to achieve the goals we set, and plenty of literature that supports the positive outcomes of feeding therapy. Would you guess that six months ago, Nicolina, an adorable 5 year old, was an extremely selective eater? With persistence and hard work, Nicolina is expanding the foods she tolerates, the foods she enjoys and the foods she will attempt. Trying something new can be empowering!!

–Anne Toolajian, MA, CCC-SLP

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The Art and Design of Out-of-the-Cart Shopping

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Shopping with your kids may fall into the category of unavoidable things you’d rather not do. Or, perhaps you’ve found you really enjoy it! Enjoy it, or not, shopping raises well-documented safety issues, especially related to shopping carts. For examples, a study done in 2014 found that every 22 minutes a child in the United States experiences an injury related to a shopping cart. 90% of shopping cart related injuries occur with a parent present. In fact, the American Association of Pediatrics has advised keeping children out of and off shopping carts (or leaving them home, or bringing along another adult) whenever possible, attributing most injuries to falls. As a reminder, seats in shopping carts are intended for kids (strapped in) from 6 months to 4 years and the cart itself is intended for objects, not for people. Shopping with your child out of the cart raises its own safety and logistical considerations.

So, what should you be doing when you bring your child along for some out-of-the-cart shopping? And what if your child just happens to experience extra challenges that compromise her ability to control herself? Here are some suggestions for out-of-the-cart grocery shopping with all kids , especially those who easily become out-of-control:

Know when your child’s ready (emotionally, sensorily, motorically, communicatively and cognitively) to make the trip to the supermarket, and wait until he/she is (if possible!). Consider both your child’s abilities & responses to stimulation and the characteristics of the store you plan to visit. As guidelines, your child should be able to pay attention to you in a distracting, variable environment for at least 15 minutes and follow your simple directions. He/she should be demonstrating comfort and cooperation in small shops. He/she should be able to maintain an appropriate activity level in his/her stroller or walk holding your hand through the parking lot, for at least one aisle and the check out, and back to the car. Not sure? If you think you’re close, try it…and try it with the mindset that you want to see how your child is going to handle the store visit, rather than intending to bring home a load of groceries!

Plan for success and make it special. Schedule grocery shopping trips as special events and go to the same store repeatedly, initially avoiding grouping grocery shopping with a long list of errands you need to run. Begin with small grocers. Think about where you ‘ll park (i.e. close by, so there’s little time and space between car and store, or farther away so you and your child have some movement prior to entering). Have a simple plan (re: what you’re going to look for to buy, a logical, direct navigation and how your child is going to help, what happens at checkout and in bringing items back to the car and home) and discuss it with your child. Talk about your plan as you’re carrying it out. Reinforce good behavior along the way with frequent, immediate verbal acknowledgement and praise (“I like the way you’re holding my hand .” “You just spotted the turkey in the deli case.” “You were really listening to the man at the check. I could tell he liked to talk with you.”), a small treat from home, a special item on the grocery list that he/she gets to enjoy at the end. Avoid reacting to a negative behavior (i.e. screaming, whining, running away, noncompliance, grabbing things) with something positive (an immediate treat). Prepping your kids for what will be happening as they strike out for that special time with you, reinforcing the sequence of events, talking about it later, and repeating the activity as a familiar event soon thereafter is very helpful.

Give her your attention, the entire time. This does not mean you always need to be talking to your child, but he/she needs to know from you, though your eye contact, verbalizations, physical contact and visual regard for his/her activity, that you are there for him/her. Save your conversations with a friend you haven’t seen for ages, your time- consuming search for something you just thought of, and your talk on your phone for later. Your attention means everything!

Give her a hand. Yours! Shop only for what you can handle knowing that you will need to hold your child’s hand, at least in the beginning (and likely, for some time to come). Gentle rhythmic hand squeezes can be calming and help your child focus on you. Varied squeezes can be fun.

Give her a job. Fortunately grocery shopping involves all sorts of opportunities. From the grounding influence of “heavy work” (such as reaching for, placing and carrying objects), to the focused attention needed for visual search, perceptual-motor skills for bagging, and cognitive/language stimulation such as sequencing and categorizing, shopping for groceries offers meaningful, purposeful activities for many ages and levels of ability. Think about what your child likes and likes to do and what he/she may need to do to help with appropriate behavior as the foundations for what you will be identifying as his/her job. Reinforce a job well done (on your part as well as your child’s).

Identify the learning opportunities each visit to the grocery store has provided. What worked? What didn’t? What would you do differently – proactively add or eliminate sensory input? simplify or increase complexity? reinforce desirable behavior another way? or modify the amount of your support (physical, sensory, verbal, emotional)?

Each of us knows the feeling of being overwhelmed by a shopping experience and coming home feeling either tired and drained, highly excitable, or perhaps irritable. Kids of all ages feel this too. Yet many of us love to shop, and love to shop with kids. Why? Shopping can be safe, fun…and therapeutic! From small town grocers to huge supermarkets, local shops and boutiques to immense department stores, out-of-the-cart opportunities can be deliberated crafted with loving care for positive experiences to be built upon throughout childhood.

–Sheila Allen, MA, OT

How can I coax my child to try new foods, especially if he is finicky?

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So much about the holidays seems to include food! Looking for ways to encourage your “picky eater” to try new things? Every baby and child is unique and there are a multitude of reasons for why a child refuses certain foods. While many toddlers and early school-age children experience some mealtime difficulties, there is a subset of children, many of whom have complex medical histories, who refuse most or all foods presented at meals. For these children, intervention with a multidisciplinary approach is critical and may require more specialized care.

For all of our kids, however, the primary goal is to assist them with developing a positive relationship with food. Try these beginning basics to coax your child to participate in learning about new foods while demystifying the process:

1. Encourage your child to help you at the grocery store by choosing some fresh fruits or vegetables and placing them in bags.

2. Ask for a helper at home to wash and dry fresh produce and place in a bowl.

3. Children usually LOVE to assist with food preparation…peeling, mashing and cutting with supervision. Take this time to discuss the properties of the food you are handling. What color is it? How does it smell? How does it feel? How does it change when we peel it, slice it or mash it?

4. Have your child help with clean up. They can discard the refuse by picking up and placing scraps in the garbage. “Pop” the garbage with your lips, blow the pieces with your mouth or drop the scraps with your fingers.

5. Family meal time – whenever possible, sit at the table for meals as a family unit. Solidarity sends a positive and powerful message.

6. Serve family style – passing food from person to person while serving allows the sights and smells of new foods to be part of the experience.

7. Encourage “playing” with food. Arrange foods to make smiley faces or letters, numbers or shapes. Avoid placing too many things on the plate. Start with one food and clear that before adding another. This keeps the plate visually interesting but not overwhelming.

Remember to have fun with food! Use positive dialogue such as “You can lick the peach!” rather than asking “Can you lick the peach?” Get messy! Interact, explore, manipulate and participate! With the emphasis on increasing interest and acceptance rather than eating, tastes, licks and nibbles often result. Good Luck!

–Anne Toolajian, MA, CCC-SLP

Sheila Allen’s Spinach Balls (Thanksgiving Recipe Series)

My daughters, who are now in their mid-twenties, began eating these spinach balls (nearly everyday!) as babies and still love them! A perfect recipe for kids to help make!

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• 2 10-ounce packages frozen, chopped spinach
• 2 cups crushed Pepperidge Farm stuffing
• 1 medium onion , finely chopped
• 1 cup grated Parmesan cheese (or ½ cup grated Parmesan and ½ cup grated or finely shredded mozzarella or cheddar cheese)
• 4 eggs, lightly beaten
• ½ cup butter, softened
• pinch garlic salt
• pinch ground thyme

Preheat oven to 350 degrees.
Defrost spinach and squeeze dry.
Mix all ingredients.
Form into balls 1½ inches in diameter.
Place balls on a cookie sheet.
Bake 15 minutes on top rack of oven. For lightly browned tops, broil (with oven door open) for 1 minute, watching carefully.
May be made ahead and reheated, or immediately frozen prior to baking.

Makes 60 balls .

To make this recipe gluten free, substitute 1½ cups crushed Corn Chex cereal and 3 tablespoons gluten free flour for the 2 cups stuffing.

–Sheila Allen

Liz Platt’s Cajun Cheese Dip (Thanksgiving Recipe Series)

If you’re looking for new dip, try this. It’s different and so TASTY!

• 2 cloves of garlic, grated
• ½ cup thinly sliced scallions, divided
• 1 tablespoon butter
• 1 lb. crawfish tail or lump crabmeat, drained and rinsed
• 1 (1 lb.) block of processed cheese (Velveeta)
• 2 (10 oz.) cans diced tomatoes with green chilies, drained
• Kosher salt
• Freshly ground black pepper

In a medium pot over medium-high heat, saute garlic and white parts of scallions in butter until slightly tender.
Mix in crawfish or crab and cook for about 5 minutes on low.
Pour mixture into a bowl and set aside.
Add cheese and tomatoes to empty pot and cook over medium-low heat until melted and combined.
Stir in reserved scallion mixture.
Heat on low until well blended and very warm.
Season with salt and pepper to taste.
Garnish with sliced green scallions.
Serve with seeded or seasoned crackers.

–Liz Platt

Miriam Cohen’s Chipotle Shrimp Wontons (Thanksgiving Recipe Series)

These are DELICIOUS! This is my husband’s go-to recipe that he’s made many a time over the years.

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• olive oil
• 1 16 oz package wonton skins
• ½ pound shrimp, cooked, peeled, deveined and coarsley chopped
• 1 yellow bell pepper, roasted, peeled and chopped
• 1 red bell pepper, roasted, peeled and chopped
• ½ cup chopped cilantro
• 1 chipotle pepper in adobo sauce, drained and finely chopped
• 8 ounces fontina cheese, shredded

Preheat oven to 350.
Brush mini-muffin tins w/olive oil.
Press 1 wonton skin into each cup.
Bake wonton skins10 min until tops are golden brown.
Remove from oven and cool slightly.
In large bowl, combine shrimp, roasted peppers, cilantro, chipotle pepper and cheese.
Remove cooled skins from muffin pan and place on baking sheet.
Fill each skin with reserved shrimp mixture.
Bake 7-10 min or until cheese is melted.

*Can be spicy so adjust with chipotle as needed.

–Miriam Cohen

Anne Toolajian’s Baked Brie (Thanksgiving Recipe Series)

This baked Brie is always a huge hit at our house and has become a Thanksgiving tradition. Looks beautiful and tastes incredible! Enjoy!

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•1 egg
•1 tablespoon water
•1 sheet Pepperidge Farm Puff Pastry (½ 17.3 ounce package Pepperidge Farm Puff Pastry Sheets = 1 sheet), thawed
•½ cup apricot preserves
•1/3 cup dried cranberries
•¼ cup toasted sliced almonds
•1 13-16 ounce Brie cheese round
Crackers

Preheat oven to 400 degrees.
Beat egg and water in a small bowl, using a fork.
Unfold pastry sheet into a 14” square.
Spread preserves on the pastry to within 2 inches of the edges.
Place cheese in center of the pastry.
Fold the pastry up over the chese to cover.
Trim excess pastry and press to seal the seam.
Brush seam with egg mixture.
Place seam side down onto baking sheet.
Decorate using pastry scraps, if desired.
Brush with egg mixture.
Bake 20 minutes or until golden brown.
Let stand 15 minutes.
Serve with crackers.

Serves 12.

–Anne Toolajian

Liz Duffy’s Turkey Platter (Thanksgiving Recipe Series)

I make one of these fruit and cheese turkey platters every year, with the help of my kids. There’s always a little variety of what we include, and it always gets eaten…and it’s healthy!

• Whatever fruit, cheese and vegetables you choose to use
• Crackers (optional)

A picture’s worth a thousand words here! The photo below gives you an idea what to do.
Alternate string cheese (cut in half) and apple slices for the outer layer of feathers.
Serve with a bowl of crackers.

–Liz Duffy

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How can I help to make the most out of Halloween for my sensory sensitive child?

With October being Sensory Awareness month, it’s a perfect time to recognize the strong influence that sensation has on behavior, not only for special occasions, but in ordinary daily life.

Children with sensory sensitivities are more sensitive than most other children to at least one type of stimulation and generally less comfortable with sensory events of daily life; most often more than one sensory system is involved. Mysteriously, a person can be overly responsive to some types of stimulation and under responsive to others. A common combination is heightened sensitivity to sound and to touch or texture (often known as tactile defensiveness). And frequently, when a person with sensory sensitivities is overly responsive to one type of input, other sensitivities become more pronounced. Food allergies, or sensitivities to certain foods or ingredients, may also serve to accentuate sensory sensitivity. What’s more, the accumulative effect of sensory input over time is commonly seen with sensory sensitivity; in other words, the effect of sensory stimulation adds up over time, so by the end of the day discomfort or other adverse responses to sensory input may be demonstrated when everything may have seemed fine earlier on in the day. And guess what? – Just as sleep impacts just about everything, lack of sleep or changes in sleep routine may also seem to worsen sensory sensitivities and the ability to cope with them.

With October 31st being a Monday, Halloween 2016 is looking like a three day weekend of dress up, get-togethers, parades, and trick-or-treating, with all the special costumes, masks, hoods and accessories, disguises, spooky and often unexpected sounds, music and sights, out-of-the-ordinary group activities, crowds, social interaction and goodies that go along with this over 100 year old holiday. What does all this “fun” amount to? Overabundant, and often unfamiliar stimulation. And the net effect? – A tendency toward self-protection, which, for the brain and other parts of the nervous system, means fight or flight. And a tendency toward reduced discrimination, which means a lessened ability to perceive distinctions among stimulation needed for judgment and adaptive action. It’s no wonder that poor listening, reduced cooperation, and melt-downs also may accompany Halloween festivities.

How to keep the fun in Halloween?

1. Keep it simple for the sake of comfort, both in terms of attire and activities. Choose a costume that feels like most other ordinary clothes when worn, or add a few accessories to clothes already worn by your child. Be selective about activities – you don’t have to do everything or stay for the full length of all activities.

2. Arrange a few Halloween “previews”. Practice costume wearing, perhaps even working up to the full costume. Rehearse trick-or-treating at your own front door. Play some “scarey” music and sounds, increasing volume within a safe listening level with familiarity.

3. Instill a sense of safety. Plan all events for daylight and with at least one parent or grandparent. Hold your child’s hand (sometimes and all the time), perhaps even giving it steady slow squeezes and even asking for squeezes back in return. Go to doors with your child, or let him/her know exactly where you will be waiting, in plain sight, no matter what. Give your child a big, long hug every now and then. Check back in at home for breaks between activities, or after a few houses of trick-or-treating.

4. Think “sensory”. Based on what you already know about your child’s sensory preferences and aversions, take your child’s perspective and analyze the environment. What’s potentially itchy or too much on the skin, too loud, too much of an undesirable tone(s) (i.e a high scream, a spooky laugh, a siren), too bright, distracting, disruptive, disturbing? Avoid surroundings that include others’ inadvertent touch. Remember that sensory input can have an accumulative effect.

5. Keep it positive (aka quit when you’re ahead). It’s far better to return home before a problem occurs. For those kids who will still want to stay at an activity or do more trick-or-treating beyond your limit, plan for a Halloween surprise back home that’ll help motivate your child to head home with you.

Although intended for Halloween, these tips can be applied to other events or outings too. Older children with sensory sensitivities who have the social skills and judgment to be out without a parent can benefit from learning and using these tips themselves.

–Sheila Allen, MA, OT