EXPLORE, PLAY, GROW: Our visit to see Winter The Dolphin

We are kicking off a new feature on our blog called Explore. Play. Discover, a series of blog posts sharing our reviews of fun places to play. We hope this series will help not just with vacation or field trip planning, but will also bring exposure to incorporating play into your travel fun.

For our first entry, we are sharing our recent visit to Clearwater Marine Aquarium. This marine rescue center and aquarium is located in Clearwater, Florida, and although it has been in operation for years, it was made famous by the Dolphin Tale movies. The popularity of the movies has certainly increased the number of visitors to the aquarium and has increased funds to improve the facilities and services.

Clearwater Marine Aquarium was easy to find and we were able to find (free) parking close to the entrance because we arrived early. Visitors arriving later park farther away. General Admission pricing is $21.95 for adults, $16.95 for children, $19.95 for seniors, and children under 2 are free. The kids were super excited to see the actual houseboat filmed in the movie outside the aquarium and loved pointing out the features they remembered.

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While my 9 and 11 year old were overly excited to see Winter (the Dolphin famously rescued), we were all pleasantly surprised by the other experiences offered. We got a tour of the animal hospital and the well educated volunteers showed us a huge board that tracks when animals were brought in, from where, what their injuries are, and when their expected release is planned. We saw a sea turtle brought in a few days earlier with a cracked shell that was bandaged and resting. We learned that sea turtles are at risk for a virus similar to HPV in humans and that their center is one of a few in Florida that perform laser surgery to remove harmful growths caused by the virus. Our daughters got to hold a bucket filled with the amount of fish a dolphin eats daily. We learned that anyone from the Coast Guard to boaters can call if they spot injured marine life and that Clearwater Marine Aquarium goes out to rescue them.

Next, we made a beeline for the VIPS of this place, Winter and Hope (we could hardly hold the kids back). They are in the tanks that they were filmed in during the movie and were separated at first and then joined together. Trainers on a microphone shared with the crowd the daily routines and care of both dolphin and we got to observe Winter getting therapy to help his prosthetic continue to fit. She didn’t seem to mind the stretches! The kids got to hold an examine one of Winter’s prosthetic tales, which was incredibly cool!

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Next to their tanks were sea turtles with missing limbs, damaged shells and several sea otters. One was paralyzed when hit by a car and could swim with only the top half of his body. Another was raised by a man living on a fishing boat for a year (frowned upon by marine staff) until it “got a bit out of control” and they explained this sea otter acts very odd due to it’s early experiences (See what we do in those first few years really is THAT important!). We also saw the loud and noisy bird, Ricky, that was in the video and another dolphin that had been injured similarly to Winter. There were several stations where we could touch and see small aquatic animals and plants, including sting rays (75% of us was brave enough), and ask questions There were also several tanks with a variety of fish and even some sharks.

This location also included (of course) a gift shop with a variety of souvenirs. We didn’t buy any but my favorite was a plush Winter whose tail could come on/off. We did cave to buy photos of the kids made using a green screen, which were pricey but precious at $30 for both, but too cute to pass up! Towards the entrance of the aquarium they sold limited drinks and concessions and snow cones for enjoying outside under a tent.

Fairly new to Clearwater Marine Aquarium is a second spot a few miles away where they showcase features from the Dolphin Tale movies called Winter’s Dolphin Tale Adventure. We took an open-air trolley to this location (included with the general admission) and did not have to wait long for the ride there or back. At this location, we saw artifacts from the movie (Sawyers bike, the kitchen and bedroom from his house etc.) and could walk through a simulated hurricane (full with high winds, noise, and water). This only took a few minutes but was fun! This location did have a slightly larger refreshment stand, where we enjoyed ice cream and popcorn. I believe there may have been hot pretzels and hotdog type foods too. There was a hands on area for younger children where smaller climbing structures were available and children could write a letter to Winter.   A nice surprise was that Cozi Zuehlsdorff, the actress that played Hazel Haskett in Dolphin Tale was visiting and did a Q&A session and a meet-n-greet.

I would certainly recommend Clearwater Marine Aquarium as a great option for a family activity. Here are a few details to consider:

 

TIME NEEDED: I’d allow ~2 hours if you only do the main animal hospital and ~3-4 hours if you visit the location dedicated to the movies.

 

AGES APPROPRIATE FOR: There’s really something here for everyone and I did see small babies that would enjoy the visuals, but overall, I’d say this is most appropriate for 2-3 years old and up, with 6 and up likely able to fully understand the educational component (of course we believe even babies learn from their environment).  ** The hurricane simulation might be scary for younger children.

 

ADDITIONAL TIPS: If going in prime sun hours, take sunscreen. The top deck and waiting areas for the trolley are outside. We enjoyed lunch afterwards at Frenchies with cousins we were visiting. They suggested this beachy local chain (and it was quite good). Interestingly, the kids insisted on watching Dolphin Tale that evening and noticed Frenchies is mentioned in the movie, so I guess you could say we had a fully authentic Dolphin Tale adventure.

 

DEVELOPMENTAL SCORE: (we decided to add this is a potential 5 star rating system, scoring how many developmentally appropriate, hands on, movement or sensory based activities are offered). We give Clearwater Marine Aquarium 5/5 stars! ★★★★★

 

BANG FOR THE BUCK: Considering there were two locations to visit, multiple hands on experiences, major educational experiences, well educated engaging volunteers and staff, and that we were in Florida at an attraction and we didn’t stand in line or feel Closter phobic, it was certainly worth the money we spent. When you consider that part of your admission funds care of these animals — it is icing on the cake!

 

Most interestingly to me, is that in the movie many children with physical and mobility challenges, including amputees visit Winter and Clearwater Marine Aquarium. While this touched both myself (a PT) and my husband (an OT), we figured it was sprinkled in as Hollywood’s “glitter” to bring he movie full circle. I was pleasantly surprised to see for myself that it was actually true, as many times during our visit I caught myself checking out a kid’s sleek gait trainer or wheelchair and noticing orthotics.   I have to say it was even sweeter in real life to observe the look on these little warriors faces as they watched animals preserve the same ways they do. So if you are a therapist, or simply a sucker for underdogs winning big time, you may experience the same joy on your visit!

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Here at Milestones & Miracles, LLC we BELIEVE that PLAY is the way we all learn, but especially young children and most certainly when encouraged by an involved parent. If you believe in play to learn too, check out 1-2-3 Just Play With Me (the perfect resource made by therapists and moms!).

COMMUNICATION FOR ALL – How AAC Helps Children Find Their Voice

This post was originally written for Child Guide Magazine. Check out the many resources Child Guide offers as well as this article and others HERE.

 

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What comes to your mind when you hear the word “communication”? Do you think of talking? That is what most people consider to be communication. But what if you don’t have a voice to talk? Or if when you talk no one can understand what you are saying? How do you communicate then?

 

Speech-language pathologists help those without an audible voice find their “voice” by introducing them to AAC. What is AAC? Augmentative and Alternative Communication (AAC) is just that; other ways, using high or low technology, to communicate. AAC includes something as simple as a head nod to something as high tech as a speech generating device.

 

The American Speech-Language and Hearing Association defines AAC as all forms of communications, other than oral speech, used to express thoughts, needs, wants and ideas. AAC can be aided or unaided. Unaided AAC is using body language, gestures and/or sign language to communicate. Aided AAC is when tools and/or equipment are used, such as pictures and speech devices.

 

Communication is a right of all people and it is the job of a Speech-Language Pathologist to help children access that right in the absence of the ability to speak. But how does one decide which AAC approach is best for the child? There are recommended criteria that typically have to be met for the child to be considered as an AAC candidate.

 

  1. Does the child understand cause and effect? Cause and effect is the foundation of communication; I do something and get something in return. Sometimes cause and effect can be taught using an AAC device.

 

  1. Manual dexterity and fine motor skills. To be able to access sign language as a means of communication the child must have the fine motor skills to perform two-handed signs. Also, to be able to push a button to activate a speech device, the child must be able to control the motor movement of the arm and hand. Tilt switches (a simple head tilt) and eye gaze systems exist to allow children with minimal controlled movement to access AAC.

 

  1. Motivation! The child has to be motivated to communicate to be successful with any type of communication option. A highly desirable reward just might motivate any child to use their AAC!

 

So what does AAC look like for real kids? How does their voice sound? Meet Claire and Ethan, two AAC user success stories!

 

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Claire Elias, daughter of Mark and Melanie Elias of Frederick, Maryland, is an adorably sweet 4-year-old girl. Claire loves the color pink and hugging her stuffed animals. She loves to watch Minnie Mouse and Sophia the First and her best friend is her twin brother, Chase. Claire has an incredibly happy disposition and a smile that lights up a room. Claire uses AAC to express herself. At the age of 2 she began using an iPad with a communication app to request toys and answer yes/no questions. The fine motor movements necessary to operate the iPad proved to be a difficult for Claire. Now she uses a PODD (Pragmatic Organization Dynamic Display ) book to communicate. A PODD book is a picture system that allows Claire to use visual gaze to make requests, ask questions, comment, etc. Claire will be 5 in June and will attend Kindergarten next fall. Her PODD book goes with her everywhere, just like her voice.

 

 

Ethan

Ethan Judd, son of Christy and Jeff Judd of Inwood, WV, is a 6-year-old kindergartener at Bunker Hill Elementary. Ethan has an awesome sense of humor and a determined mindset. His favorite colors are green and orange and he loves, and often wins, playing UNO. Because of his tracheostomy, Ethan was unable to access his voice during his infant, toddler and preschool years. During this time Ethan used a combination of sign language and an iPad with a communication app. Since then Ethan has gained respiratory strength and now mostly relies on his voice to communicate. Sometimes he accompanies his speech with sign language to increase his intelligibility (the clarity of how he is understood). Ethan’s story is an example of how AAC bridged the gap for him until he was strong enough to vocalize. AAC gave Ethan a voice when his wasn’t available to him.

 

Claire and Ethan’s stories are just 2 of many, many AAC success stories. If you know a child who has yet to “find” their voice, contact an SLP close to you to help. Communication is a right of all individuals, no one should be denied!

 

Lacy Morise, M.S. CC/SLP, better known as Miss Lacy, is a Speech-Language Pathologist with the WVBTT and Loudoun County Schools. She is co-owner of Milestones & Miracles, LLC (www.milestonesandmiracles.com), a company dedicated to educating families about the importance of PLAY. She loves to use verbal and nonverbal language approaches to help kids access their right to communicate!

Print or Digital? Which version is best for you?

From the beginning of our business, we have enjoyed sharing our visions and dreams with you – our friends and family personally, professionally, and those who we have connected with through our shared passion for play as the best way for a child to learn and bond with a parent.

For those reasons and more, we are very excited to share with you the next step in our journey to support those who love and interact with children by truly understanding their development in the early years and encouraging the pairing of it with purposeful play.

We are proud to announce that 1-2-3 Just Play With Me is now available for purchase as an E-book!

To give you a glimpse into why we decided to expand our product to a digital offering and how it can be used, we decided to share with you some questions we are asked repetitively (and some answers too!)

“I love your product, but are you going to make it into an app? E-book? Some digital form? Paper is going to be extinct soon!”

While we both still love the feel of an actual book or product to hold, and the opportunity to give a beautiful gift to someone, we realize that many people prefer a more compact version of 1-2-3 Just Play With Me! We both embrace the qualities of printed work and the convenience of digital work. As soon as we created our product, it was a goal to create a digital version so that we could meet the needs of all customers. We chose an e-book vs. an app because 1-2-3 Just Play With Me has enough information and text that it could be a book, but we wanted the convenience as parents of quickly accessing only the information we needed at a time in card form. The E-book was the best option to present the information digitally in the format we wanted to preserve.

“Which option is best for me? E-book or print version?”

Of course, this is personal preference, but in our opinion, if you are purchasing it for yourself to use with your baby, or as a gift, we recommend the print version. Here’s why. The cards can be physically placed in a useful place like the refrigerator door. This allows you (or another parent or caretaker) the opportunity to focus on only the age/stage where the child currently is, while doing all the other things we do as parents (cook, clean up dishes etc). The cards were purposefully made to be quite durable for these reasons.  Our sturdy, decorative box also makes a lovely addition to a nursery.

We do sell a great number of units to therapists, child care centers, and early childhood professionals. Depending on the professional use, the E-book version may be more practical. For example, Lacy & I both work in early intervention, so we will be loading the E-book on our individual devices to take daily into the homes of the families we serve to use as a quick reference (as a PT, I LOVE this option to reference the areas of development other than my familiar motor area. It allows me to give the parents a comprehensive and appropriate look into which milestones we are working on and how we can tie together goals in several areas of development into a few activities).  The E-book is obviously easier to transport for work purposes than the print version for us, but if you work in a clinic where you want parents to view the cards themselves in a waiting area or interactively with you during therapy sessions or parent conferences, the print version may work best.  Additionally, the eBook version has a table of contents, search engine, and hyperlinks to additional resources that the print version doesn’t have.

“I really like your product. I wish I had it earlier, but my child is 2 years old, so I’m not sure I can justify buying the whole set. Have you considered splitting it up into sections?”

Why yes, we have! We considered this in the early development phases of the print version, but doing so initially would have increased our production costs making it difficult to sell to our customers at a fair price. With the E-book version we were able to meet this request! You can purchase the cards in the first, second, or third year of life separately and each comes with the detailed resource section at the end of 1-2-3 Just Play With Me, including common topics such as potty training, discipline, sleep. sign language, and book and toy recommendations. Simply search for each individual year at the ebook store of your choice!

“I really like the design of the cards. Is that lost in the E-book conversion.”

We do too, so absolutely not! 1-2-3 Just Play With Me is color coded to quickly reference what domain of child development you are looking for and sequentially by age. That was part of our essential original design so we could not lose that in the conversion. In fact, we actually added a table of contents so you can search by age or area and a search engine to look for specific topics and milestones. The only difference is, that in the e-book version, you will not see our colored scalloped borders, but you will still be able to use the color coding system to identify which of the 5 developmental domains you are exploring. The font in the headings of the e-book sections will maintain the same system as the printed cards (red for cognitive, navy for social/emotional, green for gross motor, gray for fine motor, and light blue for speech and language). Here’s a screen shot to give you a sneak preview!

 

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“So how can I find 1-2-3 Just Play With Me digitally?”

We are excited to offer our e-book through Amazon/Kindle, Barnes and Noble/Nook, iTunes.

Simply click the hyperlink above to find the version of your choice and to read a sample.

There you have it. What you need to know about our next step. As with all of our previous steps, we are humbled by your encouragement and support. For reviews of what others are saying check out these reviews and these too! If you share our vision for a world where adults understand what real development looks like and embrace their children through play, will you share with a friend or colleague that might benefit from knowing  about our E-book? Whether you are a paper fan or a digital fan, we know you’ll be a 1-2-3 just Play With Me fan once you experience the detailed developmental information, purposeful and fun play strategies, and practical and unique format we are proud to offer you! Remember you can always order the print version at Amazon, Pro-Ed, and right here at Milestones & Miracles (we’ll happily ship for free and include a gift card for you). You can also visit these lovely spaces that may be local to you to purchase one in person.

WILL YOU HELP US KICK OFF THIS EXCITING NEW ADDITION TO OUR BUSINESS? SIMPLY SHARE THE FACEBOOK ANNOUNCEMENT FROM OUR PAGE AND WE WILL ENTER YOU TO WIN A FREE DIGITAL FULL VERSION OF 1-2-3 JUST PLAY WITH ME! DRAWING WILL BE HELD ON FRIDAY 9.19.14. THANKS!

 

The Secret of “The Hot Pink Tape”

This post was originally written for Child Guide Magazine.  Check out the many resources Child Guide offers as well as this article and others HERE.

If you are a runner, or have watched a race or even perhaps a professional sporting event lately, you may find yourself asking, “What is that bright colored tape people are wearing? And why is it cut in crazy patterns?” That trendy tape, often seen in bright pink or blue or sometimes black, is called Kinesiotape and it isn’t exactly new, even though it may have gained popularity in recent years in the US. But did you know that Kinesiotape is not just for athletes? This versatile tape is actually a very effective tool for children with motor challenges as well!

 

Kinesiotape is a progression of Kinesio Tex, which was invented by Dr. Kenzo Kase in Japan in the 1970’s. Dr. Kase was searching for an alternative tape to traditional athletic tape. He noticed that traditional tape often restricted movement, did nothing to aid healing, and could potentially cause additional injuries. Out of his hard work, Kinesiotape was born. What makes it different? Kinesiotape is elastic, latex free, cotton based tape that can stretch up to 30-40% of its original size. These properties allow it to be more versatile than traditional tape. In additional to allowing full range of motion and being very comfortable on the skin, the elasticity of the tape allows it to perform many functions. Kinesiotape is meant to be placed very strategically depending on the reason why someone is wearing it. Depending on placement it can increase healing, decrease inflammation and swelling, and support weak muscle by encouraging activation, or increase function lost by spastic muscle by encouraging a decrease in muscle tone. In addition posture can be improved with use.

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Sounds pretty incredible, right? Here’s how it works. Our muscles are each individually covered in a think filmy layer called fascia. Between the skin and this fascia are layers of connective tissue. When Kinesiotape is applied strategically to the skin, it tugs on the skin, which pulls on the connective tissue, which pulls on the fascia, which tugs on the muscle. The result is either an increased “fascial envelope,” allowing for 1) increased removal of toxins (lactic acid and waste) and increased space to allow fresh blood to restore tissue or aid in healing or 2) Encouragement of activation of a specific muscle for a specific purpose., improving posture or strength through increased use.   When used this way, the tape is like a constant tapping on weak muscles saying, “Use Me!”

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This can potentially best be illustrated by looking at something concrete like a bruise.

In the images below, Kinesiotape has been used to increase the space between the fascia and the skin and allow quicker healing in the places where the tape was placed.

How is this used with children or anyone with motor challenges? In many ways! Children with atypical muscle tone (either hypotonia (low tone), hypertonia (high tone) or any sort of weakness may benefit from Kinesotape. When the tape is applied strategically over the muscles that need assistance or strengthening, the result is a slight tug that encourages the child to use their body in a specific way. When used this way, Kinesiotape can be used as a bridge to encourage strengthening or function through active participation. The child wears the tape, the tape encourages the child to move their body in a way that strengthens, stretches, or improves function, and eventually the child may get strong or functional enough to not need the tape. An example would be using the tape on the abdominal or back muscles in a child with Downs Syndrome who has trouble sitting alone or on the hand of a child with Cerebral Palsy who has a hard time opening the hand to grab for things.

Owen Ruffner is a 2 year-old child has benefitted from Kinesiotape in large ways. Owen has Mitocondrial Disease and as a result has weakness and low muscle tone, which challenge him when moving and attempting to control his body. Owen is learning to walk with a gait trainer and without tape, tends to drift to his left weaker side. When Kinesiotape is placed on the left leg, encouraging full activation of his muscles, he able to walk in a straight path. These results were immediately noticed after 1 application by his Physical Therapist. His mother Kasey McDaniel has been thrilled with the progress. She shares, “Kinesiotape has helped Owen by giving him a chance to use his muscles on his weaker side. I have noticed a huge difference with daily function and with helping him as he learns to walk.”

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The possibilities are quite endless with Kinesiotape as it is relatively low cost, is easily tolerated on the skin, is waterproof, and usually lasts 3-5 days per application. It is very important that anyone using the tape is initially taped by someone with strong knowledge of anatomy, such as a licensed physical therapist, and by someone who has had training on the Kinesiotape method.  Once a few applications are applied, tweaked as needed, and monitored, a successful method can be taught to a willing parent, who could continue the taping at home, with the help of a physical therapist.
It is true that Lance Armstrong was one of the first to expose Kinesiotape to the United States, swearing by the pink tape specifically for his knee injury, but your child may benefit as well. If you haven’t tried it yet, the risks and cost are low, but the benefit is often quite high. Ask your pediatric PT about Kinesiotape at your next visit.

 

For more information about Kinesiotape and the Kinesiotaping method, visit: http://www.kinesiotaping.com/ and http://www.kinesiologytapeinfo.com/pediatric-kinesiology-taping/

 

What Can You Do With Ribbon, Marbles, Golf Tees and Pom Poms? We Have Some Ideas for YOU!

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Going into homes to serve children can be tricky when it comes to engaging them.  Therapists can be tempted to take in their own toys because the child will quickly join in the fun when a new toy is presented.  But we certainly don’t want parents to feel pressure to purchase the toys we bring into the homes.  Contrary to popular belief there is no magic in our toys!  So it is often best practice to play with what is available in the home and sometimes that is very little.  It can be heartbreaking to be in homes with not even a single book or stuffed animal.  Until I worked as an EI therapist I thought EVERY child owned at least one of each of those.  So in order to help these children have access to developmentally appropriate toys we often help families create toys out of everyday items that can be found in their homes.  At the request of another early intervention therapist we are posting this blog with photos of a few homemade treasures you can share with the families your serve or your own family at home!  I think creating homemade toys is a great way to engage children and their imagination and drives home to parents that it is not the toy that matters but the “PLAYING” with it that does!  We hope you find an idea here you like but if not be sure to visit our Pinterest DIY PLAY board for more ideas.  And certainly refer to 1-2-3 Just Play With Me for more fun PLAY at home ideas paired with developmental milestones for kids ages birth to three.  PLAY BUILDS BRAINS people!  Spread the news!

 

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Create crazy creatures with plastic golf balls and pipe cleaners

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Putting pom poms into a plastic bottle with the bottom cut off or a paper towel roll tube. Then pull up the bottle/tube for an explosion of pom poms! The mirror adds an element of interest as the little one can watch what they are doing.

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Use a lidded plastic container and a few ribbons. Have the child pull the ribbons through the lid.

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Color matching with play-doh and colored Q-tips.

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Fine motor work with golf tees and marbles. To add more difficulty have the child use tweezers to place the marbles.

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Make a Munchy ball by cutting a slit in a tennis ball. This could be used as a reinforcer as well as work on fine motor strength.

“The Look” And What It Silently Says to Me From A Sibling Of A Child With Special Needs

Last week I got the opportunity to speak at career day at my daughter’s school.  I drag my big therapy ball, some thera-band and thera-putty, my anatomy coloring book, a baby doll, and other interesting goodies that I play with every day into the school every time I am asked to do this.  The “regular grown ups” (aka lawyers, mortgage brokers etc.) laugh kindly.

 Last week, I had 20 minutes to share what I felt was most important about the profession I love. And then I did it again 3 more times. 100 4th graders and me. I gab on and on about how Physical Therapy is repetitively listed as one of the “happiest” professions, how great the job outlook is in coming years, and what I love about my job. I share that interested students need to like sciences, can’t be repulsed by touching people, and need to enjoy social interaction with many kinds of people.  I am a total nerd, but I get misty eyed sharing about how I love the teaching part of my job and what a blessing it is to motivate parents who get such satisfaction and joy when they get to be the ones who teach their child to roll, crawl, or walk!

I’ve done this for years for elementary, middle, and high schoolers. Without a doubt, when I ask for questions at the end, I get the same ones every single time – no matter the age.

“Did you ever work with an NFL player, NBA player…Professional Wrestler?”

“What’s the grossest thing you have ever done?”

“How much do you get paid?”

“You dissected a real human in school? Ew. Were they alive or dead? Was there blood? Did you cry? Ew.”

As consistent as these questions are, I am always ready for them. And there’s another one that happens every time as well. Usually when we are almost out of time, a child will somewhat sheepishly raise a hand and when I call on them will ask…

“Have you ever worked with someone with Downs Syndrome?”

 

or

 

“Have you ever worked with someone with Cerebral Palsy?”

 

or

 

“Autism?”

 

No other comments. But none are needed. I get the look and I know. This is the sibling of a child with special needs. No words are needed because the look is enough.

The look says, “I know you get it.”

The look says, “Someone like you has been to my house every week and knows us.”

And, “You know how hard my family works for small things that people take for granted.”

And, “You know how sad it is for us when people make hurtful comments.”

And, “You know that I am often expected to be more patient that most kids my age, and that that isn’t easy, and sometimes I’m resentful, or wish for more attention, and jealous. And you know that I feel bad about that but I still can’t help it.  And you know that despite these sometimes “yucky” feelings, nothing makes me feel more proud than when my sibling overcomes and obstacle or learns something new…because they don’t do it alone…my whole family does.”

Career day is a joy. It’s a day that recharges me with excitement about my job and my calling in this world. But, the sibling “look” gets me every time. 

Sometimes I wonder if those kids can silently read my “look” back to them. If they can, I hope they read,

“You are brave. And strong. And important. Not just because of the kind of sibling you are, but because of who YOU are. All alone. As YOU.”

And I hope they hear, “What you are learning from your sibling experience is compassion, and empathy, and a patience, and an awareness, and gratitude greater than average people will ever even know. And it is a gift. And it will make you do great things in your life.”

And I hope they know, “Your parents love you for you. Not because of what you do to help but for who are you are. Are for the special gifts you yourself have.”

And finally, I hope my look back says, “I get it.” And even though I don’t know you, “I’m proud.”

I’ve spent a lot of time thinking about the kid that asked that question last week and the kids who have asked that same question in the years before.  April is a month dedicated to Autism Awareness, Child Abuse Prevention, Mesothelioma, Children’s Footwear Awareness, National Minority Health Month, and Genocide Awareness & Prevention among others.  All are so important.

But I’m here to say, let’s let every month be awareness of siblings with special needs month….awareness of their own special needs. 

How can you celebrate?

Do you know a sibling of a child with special medical or health care needs?

       Take them out for a special day celebrating just them..doing something they love and often can’t do.

       Better yet, volunteer to watch their sibling so their own parent can do the same.

       Make a donation to the many camps that offer attention and love to these super siblings so that a child can attend. Financial costs are often a struggle for families. Sharing your resources to help a sibling attend camp, or play a sport would be a gift!

       Simply be aware of the challenges with families you know or don’t know. Offer help if you feel comfortable. Offer a smile. A “we are all in this together” wink. All can go a long way.

       Teach your child compassion and friendship by modeling it. Siblings of children with special needs have their own special needs – quality friendship is one!

 

Do you have a child with special medical or developmental needs? How do you feel their siblings are best supported? What are their needs? Join our conversation!

 

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BIG INSPIRATION IN A tiny PACKAGE- how a little girl with CAS taught me to believe and persevere.

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I received the phone call after recently rejoining the workforce from  maternity leave with my second child.  I remember exactly where I was when the service coordinator called to ask if I would consider joining the team of a  2 year old diagnosed with Childhood Apraxia of Speech (CAS) whose parents are both special educators.  Whoa!  Talk about pressure!  The family was requesting me because of a recommendation they had received from another family I worked with whose son had CAS.  I had recently developed an interest in the speech disorder after serving two other children with suspected CAS.  I took a couple of courses and settled on a therapy kit to address CAS but like they say, “experience is the best teacher” and I wanted some of that.  So I agreed to be Camryn’s speech therapist, anxious to learn more about CAS through my treatment of her.  Although I didn’t know it at the time, Camryn would end up being  MUCH more to me than just experience.

I first met Camryn one Spring evening at her home.  She was a pint-sized toddler full of spunk and cheer.  Our first interactions let me know it was going to be a long road for her.  I explained to her parents that her speech therapy would be more like a marathon than a sprint.  They asked me questions like, “Will she ever talk ‘normal’?“ and “Will this be something she will struggle with for the rest of her life?”.  All valid, good ‘concerned parent’ questions, all of which I could not answer.  And so began my journey with Camryn, me teaching her-her inspiring me!

ASHA (American Speech-Language and Hearing Association) defines Childhood Apraxia of Speech (CAS) as a motor speech disorder where children have difficulty saying sounds, syllables and words in the absence of muscle weakness or paralysis.  The brain has difficulty planning the movements required of the tongue, jaw, lips, etc. needed for speech production.  The child knows what they want to say but are unable to get their mouth to move in a way to produce the words.  These children require frequent, intensive speech therapy to improve and sometimes CAS co-occurs with feeding difficulties and/or cognitive delays/learning difficulties.  There is little data available reporting the prevelance and incidence of CAS however, some sources suggest that 1-10 in 1000 children have the disorder.

When I started with Camryn she could say /s/ and /ah /.  That was it.  Because of her sweet, laid back personality she wasn’t yet experiencing much frustration.  Plus her mom had been very proactive in teaching her sign language, which gave Camryn a way to express her immediate desires.  We started with 2 sessions per week and continued on with this schedule for a few years.  Her improvement was slow and steady with some bursts of progress here and there.  While me being there was important to guide her therapy along, the biggest job was left in the hands of her family.  I stressed to them that her progress would be hugely dependent upon them practicing with her EVERY single day.  Their dedication was obvious when I would come week to week and witness her saying new sounds and syllables with less effort.  Each sound, syllable and word Camryn said was earned.  Repetition, practice, dedication, perseverance and determination were required for her to do something the rest of us take for granted.  Camryn’s challenges were huge.  What I was asking her to do week to week in therapy was extremely difficult but she didn’t give up.  When I think of the challenges Camryn has faced over the years I am ashamed to think how quick I am to give up on much less challenging tasks.  She has never backed down, only risen up.  And her progress and successes are proof of that!

 

It’s been 5 years since I had the pleasure of meeting Camryn and her family. Today she is an aspiring gymnast who attends kindergarten, speaks in 5 word sentences, ask questions and carries on lengthy conversations.  She has inspired me and challenged me beyond my expectations.  She is my success story; my proof that hard work and a positive attitude can only lead to awesome achievements!  Camryn will go far in this world inspiring others to rise up to whatever challenge they may be facing.  I am proud of her, and her family!  And Camryn will forever remain one of the strongest, bravest, FIERCEST girls I know!

 

If you are concerned that your child, or a child you know, may have CAS, contact a speech-language pathologist to request an evaluation.  For more information on the disorder visit:  www.asha.org and www.apraxia-kids.org.

Can you feel the LOVE tonight?

It’s February.  The month of love! Is love in your air?

Love is on my mind. I’m not talking “romantic sweep me off my feet hubby love” (although I do love that kind!) Also not talking about “stare at my beautiful sleeping children in awe and adoration and forget how crazy they made me today love” (yep, guilty of that sometimes too.)

I am talking about love of life.

I had planned on blogging about magnet play today. We’ve been collecting and playing with some really cool magnets (and I promise that post is to come), but the thoughts of loving one’s life has been right in front of my face no matter where I turn for the last few weeks.

I’ll share a few examples.

A few weeks ago, our church took a turn hosting WATTS guests. WATTS is a brilliant idea of love turned into action – that helps churches in our community take turns housing the homeless through the coldest nights of winter. But “housing” seems like a generic word because what people do is much more – they cook, sweat, share, sleep, eat, and visit with guests. In a simpler explanation – they become vulnerable to what happens when we allow ourselves to have deeper exchanges than a casual “hi” as we walk by someone on the street. You know what happens when we open ourselves up, right? We usually get scared, but we also usually receive more than we anticipated. Example #1 – Lulu – with her megawatt smile, who shared the most soulful version of “This Little Light of Mine” with us in the kitchen as a thank you gesture for the meal we shared. As you can guess – not a dry eye.  Example #2 – another guest – we’ll call him “Jim” who was brave enough to show up for our fairly traditional church service for weeks after his stay with us and sit next to a majority of fairly well dressed folks. He beamed as he smiled with pride and shared with me in the hall that this was his “second week here.” He was so proud.So happy.

LOVE.

That same week my husband Brent came home with tears in his eyes.   He is a home health Occupational Therapist and had just left the home of a family where the husband has a terminal illness. He is fed through a feeding tube and kept alive by breathing with the help of a ventilator. That night before Brent left their home, the wife was preparing to tube feed her husband, but first they stopped to say grace and say thank you. They stopped to say thank you.. for a feeding tube – because it help sustain his life. This week, while we all complained about the never ending cold, snow, and ice, he was late coming home because he helped prepare her to use a generator that their friends had gifted them with in case the electric went out – so that she could keep the ventilator going, and he could keep breathing.

LOVE.

 

I talk and write often about the love of my patients and the many gifts they have given me. One special little person I have written about in the past is a friend of mine with Spinabifida. You can read more about his incredible journey HERE. When I first met him, through referral to the early intervention program that I work for, I also met two other little boys with various forms of Spinabifida. They were all born within 4 weeks of each other and all were referred to me at the same time. I knew it wasn’t a coincidence. (side note: in the 5 years since then, I have only had 1 referral for a child with Spinabifida). 3 Families with 3 different initial levels of acceptance to their sons’ diagnoses, 3 different sets of questions, expectations, hopes, and dreams. I could go on forever about this and all they taught me, but what stands out most today is the memory that one of the fathers had a long list of blunt questions regarding his then 4 weeks old infant – Will he walk? Drive a car? Play baseball? Date?.  Of course, I did not have all the answers, but promised we’d do our best together to make him as independent as possible. Fast forward 5 years. These boys are school aged. Many peers their ages are starting activities and sports, and while some activities (like music, art etc) and wonderfully accessible, all sports are not. These sports loving dads did not throw in the towel. They did not accept limitations. They are starting a wheelchair basketball league. They are recruiting, finding practice space, and even finding old adult chairs so they can play with their sons.

LOVE.

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These 3 examples are some of the purest forms of love.

Love of sharing any gift you have. Love of being welcomed and looked at as a person for the first time in a long time. Love that comes from sticking with something for the first time in a long time. Love strong enough to care for another full time. Love of a child in the highest form – acceptance.

Many kinds of love that all have one thing in common – LOVE OF LIFE.

Love of their lives.

Right where they are.

Without complaint.

Without hesitation.

Sure, there might be a wish for something different – permanency, stability, or health – but those wishes don’t threaten that intense love of life.

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It’s been cold, and icy, and snowy here for weeks. It’s been a long time since we’ve seen the sun. We’ve been inside – allll together – for a reaaaaalllly long time. It’s easy to fall into winter blues and want for more. Or different. Look around. Find the bright spots  – like Lulu, and “Jim,” and Brent’s patient and his wife, and my brave Dad friends.   In my twenties, looking at these examples would make me feel bad or guilt ridden. I won’t lie – the day he came home, I thought, We can’t even remember to say grace every night for our healthy, warm, homemade food, that we have the luxury of chewing, tasting and swallowing….and they remember to be thankful for a feeding tube.  The difference is – that in my 30’s instead of feeling bad, I feel inspired. I look to those who are bright spots to me and to my family and instead of hearing “You should do better,” I hear, “I want to try harder” and “I want to love like they do.”

As parents, and grandparents, and teachers, and therapists…like it or not…we are the example that has been given to our children. Will we choose to teach them through example to wish for more and hope for different than what we are fortunate to have? Or will we find favor with each day and be the bright spot they will remember to model after?

Go Shine friends! Spread the LOVE!

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You Really Are What You Eat & So Are Your Children: The Effect of Nutrition on Development

This article was originally written & published for Child Guide Magazine, which provides excellent resources and activities for families. The January 2014 issue can be found in it’s entirety HERE.

You are what you eat. How many times have you heard that? As adults, we certainly have considered this when considering our own food intake, but what about our children?

One local family has been considering every bite of what enters their son’s mouth.  Finn Csordas is 2 ½ years old, who is affectionate, silly, and quite the charmer to his 3 older adoring sisters, but this was not always the case. Shortly after his birth, his parents, Jennifer & Alex, noticed how frequently Finn was fussy. His original pediatrician initially felt this was simply colic, but as Finn grew older, his parents’ concerns also grew. Finn spit up more frequently than other babies.  He had frequent hives in many places on his body that the family was told were eczema patches. He was fussy more than he was content and could not find a way to self-soothe or to be soothed by his parents. More concerning, Finn seemed “spaced out,” and had significant delays in social, language, and motor skills that became more noticeable the older he became. The most alarming observation though, was head banging.  It started at night when Finn would bang his head against his crib to fall asleep but progressed to banging throughout the night, and then even during the day, while playing.  Finn would find the corner of the wall and bang his head until a bald spot appeared and didn’t seem concerned by the discomfort.

 

Jennifer & Alex persisted in their belief that these symptoms had to be more than eczema or colic – but their journey wasn’t an easy one.  After switching pediatricians, they began a search for what was going on with Finn. He started medication for acid reflux, which helped somewhat with spitting up, but not with other symptoms. Because he did have a history of reoccurring ear infections, he had tubes placed in his ears.  Shortly after this procedure, he did start to walk, but the communication and social skills continued to become more delayed and the head banging intensified.  The Csordas’ worked with a team of early interventionists from West Virginia Birth To Three, including speech, physical, and occupational therapists that offered strategies from sensory integration and balance activities to teaching basic imitation skills during play as a basis for eventual language development.  A developmental specialist with experience in behavior observed Finn and worked on providing self soothing options and deterring techniques for the head banging. A service coordinator helped link the family to specialists to help find a solution. When sensory strategies weren’t very successful, an MRI of Finn’s brain revealed no concerns, and he passed a detailed screening for Autism at Children’s National Medical Center, the team called on a registered dietician through the West Virginia Birth To Three Program.

 

Finn was evaluated by a gastroenterologist to determine if he had an allergic inflammatory condition of the esophagus called Eosinophilic Esophagitis (EE). When it was clear that he did not, a final referral to a pediatric allergist was made. After blood testing and 3 days of extended patch testing, the Csordas’ finally got their answer – Finn is allergic to soy, wheat, dairy, oats, and has a significant phenol intolerance (Phenol is a chemical found in many natural foods and in common artificial preservatives).

 

While some of their larger fears were put to rest, Jennifer & Alex had a whole new world to learn about.  Finding foods that were safe for Finn and that he would actually eat while maintaining the required calories and nutrients for his age is no easy task, but was one that they took on without reservation. Jennifer shares, “To be completely honest, I wasn’t sure that I believed all the diet changes would help, I prayed that they would, but deep down I was skeptical. To think a handful of goldfish crackers or a couple grapes could cause him to struggle for days and completely alter the course of the entire family is something I would have never thought possible, had I not lived it! “

 

After 2 weeks of eliminating the foods Finn was allergic to, there was a dramatic change in his demeanor and development. His mother recalls, “We had food journals and had to document everything he ate, all his skin reactions, behaviors, and try to make sense of all the parallels. About two weeks after we had changed his diet, he went from having about 5 words to over 70 words, and no longer needed weekly speech therapy!” Within 5 months of changing his diet, Finn has made over a years worth of progress with development.  He is walking, running, and climbing, talking in complete sentences, initiating social greetings, and is most importantly – he is a happy 2 ½ year old. While his speech is still slightly behind for his age and the head banging still remains in smaller amounts (it is likely more a learned behavior, which was originally caused by the allergic reactions), Jennifer and Alex are thrilled that they can finally get to know the little boy he actually is and not the one who could only react to pain & discomfort.

 

Finn is not alone in his diagnosis of food allergies. According to a study by the Center for Disease Control, food allergies increased 50% from 1997-2011. And while the number of people who have a food allergy is growing, there is no clear answer as to why.  And while many “traditional” allergic symptoms, such as facial swelling and hives, are well known and well recognized, those such as the ones that Finn experienced are often misdiagnosed as something other than a food allergy or intolerance.

 

Georgeann Freimuth, MS, RD, LDN, is the Registered Dietician who spearheaded solving Finn’s developmental puzzle. Freimuth, a Licensed Dietician Nutritionist and a part time professor at Shepherd University, works with children and families through the West Virginia Birth To Three Program and privately through consultations.   She sees more and more children having behavioral and developmental consequences from what they eat. When people question the relationship between the two, Freimuth jokes, “Think there’s not a gut to brain connection? Come have a glass of wine with me!”  In all seriousness, the connection of nutrition’s affect on the body should not be ignored. Freimuth says, “The gut to brain connection should not be overlooked when dealing with a child who is sensitive to emotion anger, anxiety or who has behavioral concerns. This is important because the brain and the gastrointestinal system are intimately connected. Certain foods and food intolerances or allergies can adversely affect a child’s behavior and attentiveness, while certain nutritional deficiencies can cause aggressiveness disorders and behavioral disorders as well as subtle and occasionally dramatic effects on the child’s behavior.”

 

Some food allergies are severe with defined noticeable reactions, like Finn’s, but others can be subtler.  Either way, nutrition should be included in the complete list of possibilities when assessing a child’s well being. Freimuth says,  “Food allergies or food intolerances can affect the nervous system causing the brain to have alterations in brain chemistry which then can affect a child’s behavior. Understanding if a child has food allergies and/or food intolerances along with nutritional imbalances could be helpful when trying to help a child’s behavior or development.” Often elimination diets (where certain foods are removed one by one) are suggested to determine what is the potentially offensive food.  However she cautions, “It is recommended if a parent wants to try a trial and elimination diet at home to see if their child’s diet is related to their behavior they should consult a Registered Dietitian. The caution used with trial and elimination diets are sudden nutritional deficiencies when certain food groups are removed.”

 

Jennifer Csordas agrees. “Before we knew all Finn was allergic too, it was like having a toddler with colic. He was always unhappy and no matter what we did, we couldn’t change that. Now he smiles all the time, laughs and plays, things that I took for granted when my girls did them. It takes a lot of planning and can be a challenge at times keeping up with his diet, but to know he isn’t in pain is a huge blessing. “

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Jennifer & Alex Csordas with a happy & healthy Finn

While eliminating aversive foods can be helpful in some cases, increasing particular nutrients and minerals that are lower than typical are necessary in others. For example, in some cases, increasing zinc levels can improve symptoms associated with ADHD.

As the trend for extremely busy families continues in America, so will the market for convenience foods, which are often full of too many ingredients to count and enough preservatives to frighten any parent. While it does take pre-planning and self-packaging on the part of parents, ensuring children have whole foods (ones your great grandmother would recognize. Yes to the apple. No to the bright orange cheese puff) is a great place to start.  Remember that whether your child has a diagnosed condition or developmental concerns or not – foods that we all eat certainly affect us in some way.   The effect of nutrition on an individual is certainly more far reaching than allergies alone. An individual can have developmental or behavioral concerns from intolerances to certain foods or reactions to the chemicals and preservatives found in many foods children are fed, or from low levels of essential vitamins and nutrients.  Freimuth advises, “Intolerances to foods, food additives or looking into food allergies may have a crucial role in your child’s behavior. Behavior and cognition in children and adolescents can be influenced by what they eat and their nutritional statuses.”

While nutrition is not the culprit for all developmental or behavioral concerns, it certainly is a possibility. If you have concerns about the role nutrition is playing with your child, speak to your Pediatrician or a Registered Dietician who specializes in pediatric care. Prepare for the conversation by logging 3 days worth of everything your child eats to share specific intake (including medications) and list frequently observed behaviors or developmental concerns for discussion.  Each parent may have individual standards for what they are able and comfortable to provide their child to eat, but all parents wish for happiness and health for their child. Let’s help our children live out “You are what you eat.” We can do this first by remembering that what they put in their bellies has a huge impact on their brains.  We can also start with small changes to provide nutrition that helps them to be happy and healthy for many years.

 

Georgeann Freimuth is dedicated to helping families learn more about the gut to brain connection and how it could be affecting their child. She can be reached at: georgeann.freimuth@yahoo.com The author thanks her and the Csordas family for their contributions to this article.

 

Nicole Sergent, MPT is a Pediatric Physical Therapist & co-author of 1-2-3 Just Play With Me. Her favorite processed food is a Reese Cup, but she feels happier & knows she is smarter when she eats her many favorite non-processed foods – especially nectarines & brussel sprouts!

 

 

Navigating Special Education in the School Setting: What Parents Need To Know

Child Guide Magazine is a great source for information and to find fun activities! Milestones & Miracles is proud to team with this great FREE publication by writing a column geared toward the Special Needs/Differently Abled Population.  The article below is our contribution to the FALL 2013 Issue which is filled with great “Back To School” Information. Grab yours today or view online at: http://issuu.com/childguidemagazine/docs/septoct2013cgweb

 

Are you a visual learner or auditory learner? Do you learn best by actually doing? Do you need a quiet room to retain what you are reading? Each one of us learns in unique ways. Many good teachers recognize learning styles, strengths, & challenges and accommodate the children within their classrooms. But what happens when simple modifications aren’t enough? Some children need additional supports and services to make the educational experience a positive one. And while learning about and implementing those services can seem very intimidating for parents, the process does not have to be.

Students 3 years of age and older that need supports and services in the public school setting receive them under Part B of the Individual’s With Disabilities Act (IDEA). This is a Federal Law that ensures special education services. If you are having concerns that typical classroom strategies are not meeting your child’s needs, speak to his/her teacher early. Sometimes, simple changes to a daily routine (such as changing seat location or providing a check list to stay on task) can make a huge difference.

If simple changes are not adequate, you or your child’s teacher may request testing to further identify strengths and challenges. The results of testing are reviewed at an eligibility meeting, usually held at the school, with parents, teachers, and other professionals (therapists, coordinators etc.) in attendance. If your child is found eligible for special education services, you can consent to move forward with an Individualized Education Plan or IEP. Parents, teachers, and others who have knowledge of your child’s specific needs such as therapists, nurses, psychologists and other professionals help create the IEP. You can invite others who know your child well and might help with the process. An IEP is a legally binding document that includes specific goals for your child, services and frequency of those services to support goals, & any additional materials needed to support your child (examples include special classroom materials, customized seating, or communication devices).

The IEP serves as the “map” to guide your child through the educational journey. It must be reviewed yearly, but can be reviewed more frequently per your request as your child changes, progresses, or new challenges arise. It is important that parents understand IDEA and their child’s rights under it. Seek out the assistance of an IEP advocate (counties hire these individuals) and ask to schedule a meeting to learn more and review policies that protect your rights. Each state develops a policy that outlines procedures for defining child find (how the state finds children that need to be tested), eligibility, and services as well as outlining parents’ rights and responsibilities. Refer to your own state’s Department of Education for more information on your specific policy or for support on learning more about individuals and organizations that serve to support parents through special education.

It is also important to understand that the IEP serves to meet your child’s EDUCATIONAL needs vs. MEDICAL needs. For example, if a child with Cerebral Palsy has tight hamstrings and an atypical walking pattern but can get around the classroom efficiently and safely, he/she would benefit from physical therapy, but would be served in a therapy clinic vs. a school setting in most cases.

Someone who knows both sides of the special education world in the public school arena is Tracey Parks. Parks is a 5th grade teacher at Tomahawk Intermediate School in Hedgesville, WV. While she has taught students of all learning styles and abilities for 18 years, she has first hand experience being a parent navigating the IEP process with her 9 year-old daughter Jordyn. She offers these wonderful tips to parents:

• COMMUNICATION IS KEY: Communication early and often. Request a meeting with all teachers who will be interacting with your child very early in the year (before the first conference) to share what works best for your child. Use a simple communication journal (could even be on a number system, such as 1= good day). Teachers have little time to write daily lengthy notes, but sharing simple information daily can be helpful to both parent and teacher. Parents might also consider sharing important things daily such as deviations to sleep routines, digestive issues, changes at home, or illnesses as they might impact the child’s day.

YOUR CHILD NEEDS YOU TO SHOW UP: IEP meetings are your chance to learn about your child from the people who spend hours with him/her! Make arrangements if possible to be there so that you can listen and learn, share your opinion and ideas, and brainstorm as part of the team. Your participation shows your child’s team that you are sincere about working with them for the benefit of your child. If you can’t attend in person, request a phone conference.

• ASK QUESTIONS/MAKE SUGGESTIONS: Don’t be afraid to ask questions regarding your child’s education. A good teacher should be willing to take the time to explain and answer. An example is asking for a second set of books so you can help your child at home. If you know of something that benefits your child at home or in other settings, such as during private therapies, don’t hesitate to share with your child’s team.

• BE PATIENT & POSITIVE: Remember that teachers are responsible for many children besides yours. While your concern or question may be incredibly important to you, try to allow reasonable time for the teacher to respond. Go into meetings or conversations with a positive attitude. Your disposition can be contagious and can make these exchanges more productive and pleasant for both you and the teacher.

It is important for the success of each child that parents and professionals work together on common goals. Successful IEP’s do just that. While the process might seem daunting at first, it is important to remember that there are many people who care about your child and want to support you. Seek out their experience and help, lean on parents with similar experience, and keep yourself focused on your priority – your child being learning successfully!