Thursday, July 28, 2016

Therapy Tip-Items at Wal-Mart for Oral-Sensory Play

Welcome again to Therapy Thursday!

This is the day I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Items at Wal-Mart for Oral-Sensory Play

The teething and rattle section at my local Wal-Mart

Almost every parent purchases toys for their babies to chew on for teething and play. Providing these type of toys is just a normal part of every baby's learning experience and development.

But there are babies who need oral-sensory play to address their developmental, medical, or sensory needs. Who? Babies who have low muscle tone including those with Down syndrome. Babies with a feeding tube with limited or no oral feedings but with the hopes of one day becoming an oral feeder. Babies who eat orally but have feeding challenges none the less.

As a speech-language pathologist, I have access to websites and catalogues selling costly tools for oral play. Many of these tools are designed to:
-provide texture for a sensory experience
-provide resistance to develop jaw strength
-provide stimulation (and therefore a specific movement) of the lips, tongue, or jaw
-encourage munching or chewing motions
-provide vibration to help the child receive added input

These specialized tools are great and useful. In fact, there are many courses and books that tell speech-language pathologist how to best use them and even have hierarchies for determining progress. I have purchased many of these and use them in my practice. But, what are parents suppose to do beyond the prescribed exercises? Many of these tools are not meant to be handed to a baby for their own oral play. Instead, they are done with a parent/SLP making sure the tool is used appropriately. These programs are great, and this entry is not about finding an alternative to them.

But the questions becomes for me as a speech-language pathologist:
How can I encourage the baby's oral-sensory play in a safe manner once I leave the house?

My answer has been to look for things available to any baby at local stores. Over the past few years, I have been finding more and more teethers and baby toys that can help fill some of the objectives I have with babies who need oral-sensory play.

Below are some products I found at my local Wal-Mart that would be useful for babies under 12 months who have been determined to need oral-sensory play. While I cannot go into too much detail in this blog about how to use each tool for a specific problem. I will tell you what I see when I look at these products as a speech-language pathologist. Hopefully, this can help you when you are shopping for your child.

Here are some things I like about the Munchkin Orajel Massaging Teether:
-It has bite activated vibration which should encourage baby to repeat biting.
-There are different textures on the teething parts which will give different feedback to the baby.
-The actual teething parts of this are made of different shapes. These allow the baby to use different teeth or to use varying amounts of force to compress the teether.

Next up is the RaZ-Berry Teether.
-I especially like this for those babies who are tube fed and need oral stimulation during feedings. This pacifier type teether is not smooth but has bumps and textures on it giving different feedback than a typical pacifier.
-This can be frozen to allow a cold temperature to be introduced and therefore add another layer of stimulation to the baby's mouth.

This is the Gummi Teething Necklace.
-This is a very basic version of an expensive version sold by therapeutic companies. This has texture on the teether to give the baby additional feedback in their mouth.
-The necklace is designed to be worn on the mother while the baby chews. This could be beneficial for babies who need oral play but like to be on mom's lap often. This teething necklace isn't necessarily that special, but I see where it would have uses for particular babies.

Now, let's look at the Nuby 3 Step Teether Set.
-I love how this includes three teethers going from Step 1 to 3. While they determine the steps on which teeth are needed for the teether, it can be also be said that these teethers go from least resistance to most resistance. That means the amount of jaw strength needed to compress or bite the teether increases through the steps.
-Again, I love that each teether has different textures on them for providing different feedback for baby's mouth.

Here we have the Infantino Vibrating Teether.
-I love anything that vibrates to give more feedback to the baby, especially those with low muscle tone.
-Vibration is again activated with biting, so this may give you some indication of the baby's jaw strength.

Finally, this is one of my go to products in my therapy practice, the NUK tooth and gum cleanser with a finger brush. Though, this is a product that baby cannot use alone.
-Proving oral stimulation of the gums and teeth is essential early on for babies who have low muscle tone or feeding difficulties. This product is great because you get the cleanser and also the finger brush to provide this stimulation. If the baby cannot tolerate the cleanser, you can still use the finger brush.
-The finger brush can also be used to encourage munching movements on a baby by stimulating the back molar region of the gums. This is a technique that I have learned about by taking courses through Talk Tools. For more information on this, please consult a trained SLP.

I hope you can see what I see when I look at these types of products for babies and promoting oral-sensory play. Check out your local stores and see what you find.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. Please consult your child's speech-language pathologist to see how and if these products can be used for your child.

submit to reddit

Tuesday, July 26, 2016

Salt Shakers and Other Things I Am Keenly Aware Of

I have lived a strange life since becoming a mother. It does not seem that strange when I am living it. But, then something happens that will show me just how different my life has been the past several years.

Being the mother of a child with medical and special needs has changed me more than other moms with healthy and typically developing children. Some things have become ingrained in me without even knowing it. Time and time again I am reminded just how different my mothering experience has been and the super mommy senses that have developed as a result. Take these for example:

-I almost get a headache when multiple children talk at once. I know this sounds strange. But, I have 1 fairly quiet six year old boy and a minimally verbal 10 year old daughter. I am use to hearing only 1 voice most of the day. Compound that with the fact that my job as a speech-language pathologist is working 1-on-1 with toddlers with language delays. Most of these children do not say much either. Hearing several children talk at once makes my head spin. Having several children talk to me for an extended period of time makes me feel like I am in sensory overload. It is just a foreign experience for me, and I can't seem to focus on many voices at once.

-I want to panic when children refuse to hold my hand while crossing the street. I hardly ever walk anywhere in public without holding my daughter’s hand. She has been a runner for years forcing me to hold her wrist while crossing the street or walking through parking lots. While her running off has decreased over the years, I still hold her wrist or hand in preparation for those moments when she tries to challenge me to an unexpected sprint. When I had an outing with my nieces and nephews once, I instinctively grabbed the wrist of my niece who is the same age as my daughter as we crossed the street. She looked at me and asked, “What are you doing?” Embarrassed, I replied that I was keeping her safe. Ha! I got her across that crosswalk really safely and realized my norm is not her norm.

-I am always aware of all the possible ways to exit a building. Whenever we visit a home we have never been in before, I like to know where the doors leading out are. Sometimes, I ask the homeowners when I am afraid that I can't see all the doors from the layout. I need to know the possible ways that Jaycee might try to leave a location to explore. I try to perch in a spot in the house where I can see the possible exits and Jaycee's activity. One time, we were attending a Bible study in a home. I embarrassingly asked where the doors were because I knew this question would sound strange. I was told I can see all the doors from the living room except the door that leads to the garage. The woman assured me that Jaycee wouldn't go in there because it was dark. At some point that night, we heard the noise of Jaycee wandering in there. Trust me, I know my daughter, and I need to know the exits.

-I am also oddly aware of the locations of the salt and pepper shakers. Jaycee likes to pour these out on the table or in drinks (usually mine). Having small specks of salt all over my kitchen table and running to the floor bothers me more than it should. For this reason, the salt and pepper is never left on the table after a meal. It must always be put up away from Jaycee to prevent her from the temptation to tip it over.

So now you know some of my bizarre thoughts. If you see me exiting a building to cross the street with a few children all talking at once each holding a salt shaker instead of my hand, you will know that I am probably at my breaking point. Just walk away from me!   

submit to reddit

Friday, July 22, 2016

Devotion to Caregivers

This week, I made my debut on a devotional website called Comfort in the Midst of Chaos. I try to answer the question of how we can live a full life for God when our lives are full as caregivers.

You can check it out here:

The Full Life God Intended for Caregivers

Thanks friends
submit to reddit

Thursday, July 21, 2016

Therapy Tip: Can I ask my SLP that?

Welcome to Therapy Thursday! This is the day that I share some of my experience based as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's topic is:

Can I ask my Speech-language pathologist that?

Having been a speech-language pathologist (SLP) since 2004 and Jaycee's mom since 2006, I can say that I have had many experiences on both sides of the table. I have performed evaluations, conducted therapy sessions, counseled families, and participated in meetings. I have also watched my child in therapy sessions, read through professional reports, and been the parent at meetings to discuss my child's progress. (My daughter has Down syndrome, severe childhood apraxia of speech, and is minimally verbal).

Some parents are very vocal and ask questions to communicate with me as an SLP. Others are quiet. Some of Jaycee's professionals have been very forthcoming with me and have had open lines of communication. Other professionals never seem to feel the need to communicate with me nor do they seem pleased when I ask questions. Since, I have experience in dual roles, here are some questions you may have for your child's SLP but may not know if you can ask.

Can I ask the SLP if my child can receive more speech therapy?
Yes, but let me explain something. This is probably the question I am asked the most at work. Determining how much therapy a child receives is based upon many, many factors. The first being the program rules. Right now, anything more than 1 visit a week in my state's birth-3 system isn't necessarily illegal, but it is highly discouraged. So, the child who receives more than one session a week must have a very good reason for it.

Other than policies, the important things I consider are:
-if the child has a diagnosis other than just a speech-language delay
-if the child is exhibiting red flags that might result in slower progress
-pertinent medical history
-the child's age
-the other services the child is already receiving
-test scores
-the amount of progress made on the current frequency/duration of speech sessions

If you are asking your child's SLP this, first consider why you want more speech therapy. Instead of just asking for more therapy, state your case. Tell the SLP your concerns, tell them how the delays are impacting your everyday life, and talk to them about what you hope to attain by increasing services. Sometimes, more therapy is appropriate. Sometimes, it is not! Asking for more therapy because you feel they need it won't get you far. You need to be specific with your concerns. If you ask this question, please be open to the SLP's answer and perhaps you two can come to an agreement or some timelines/expectations.

Can the SLP give me regular updates on my child's progress?
Here's the simple answer: yes, yes, yes!! Again, there should be a policy in place regarding how you are notified of your child's progress. If your child has home therapy or private therapy, then you are probably getting verbal updates regularly. In schools, it may be harder. However, there should be a spot on the IEP which will tell you how often the progress towards your child's goals will be assessed. Usually this is quarterly. Hopefully, the SLP is communicating this progress with you. If not, you could and should ask how your child is doing. I personally would not ask a therapist to update me after every session or even weekly. Yes, that would be ideal. However, school SLPs have huge caseloads. I think you will get better information if you ask for an update monthly or quarterly. This can be in the form of a call, written note, communication notebook, or email.

Can I ask the SLP to give me homework ideas?
Yes! You should know what your child is working on and why. Hopefully your SLP is giving you some ideas of ways you can help your child at home. It is so important that skills your child is learning in therapy generalizes over to the home environment, so you need to know some quick little activities to do with your child. Again, I would not ask for daily or weekly homework if your SLP is not giving you any ideas. But let them know you are more than willing to help at home and would love to know how to do that on a regular basis.

Can I ask the SLP for information on my child's future and prognosis?
Being a parent of a child with some fairly significant delays, I know many parents are worried about their child's future early on. I often asked my child's therapists early on how they felt Jaycee was doing and basically fished for information that may give me a glimpse into the future. I bet they hated those questions!

As a SLP, I am sometimes asked questions like: Will my child ever talk? Do you think they will be in special education forever? Do you think he will live independently one day? Do you think my child will outgrow this problem?

I don't have a crystal ball, and I can't possibly know the child's future, especially at the young age of 2. However, I know why the parents are asking those questions. I do know some basic information and experience that allows me talk to the parents about the red flags or concerns I have with their child and why/why not these may cause problems. Some parents don't need to be worried about their child needing special education or speech forever, and I can easily calm their fears. Other parents have reasons to worry, and I can't deny those reasons.

A better question to ask your SLP may be: Do you think these delays will be long term? What are the biggest concerns you have with my child and why? What's a reasonable expectation for my child 1 year or 6 months from now?

I really hope you have a good relationship with your child's SLP. If not, I hope you can develop one so that the two of you can work together to help your child.

Have a question not listed here? Comment below, and I will answer it. (Comments are moderated so they will not immediately appear.)

submit to reddit

Tuesday, July 19, 2016

Theme Parks & Your Child with Special Needs

Theme parks are fun, exciting, big, exhausting, and everything in between. Taking any child to a theme park may bring trepidation to a parent. If you are like me, you wonder how your child with special needs will thrive in a new environment and if the experience will be worth all the money.

In the past few years, we have braved a few theme parks with our children and have loved it. Here's some things I have learned.

1. Know your park! Do your homework!
I have a type A personality so this is one of my favorite activities. Even if planning ahead isn't your favorite pastime, you have to do it for a better experience. First, you can look up First Aid areas or family rest areas that you may need for your child. Secondly, check the rules on what you can bring in the parks. Some allow drinks and snacks. If I can bring Jaycee's cup in the park, it will be much easier to keep her hydrated through the day.

Finally, most parks have disability ride access programs. Some are highly publicized and others are not. For the parks that have disability access programs, these will become very important to understand to get the most out of your day in the parks. We have found that all the parks we have been to have had a disability access program of sorts. (This has included all the Disney parks in Orlando, Sea World in Orlando, Six Flags St. Louis, Holiday World in Indiana, and Silver Dollar City in Branson.) Guest relations at the park can give you information if there is not any available online. Most of the access passes allow us to get a return time to bring Jaycee back to the ride so she will not have to wait in line. Usually you can only sign up for one ride at a time, but we find things to do in between. This is not a jump the line pass. This is a modified way to wait for a ride as long as the person with the disability is riding.

Jaycee meeting characters at Holiday World in her wheelchair

2. Use wheelchairs or strollers.
If your child cannot walk long distances, runs off, or is difficult to lead in a crowd, then please consider using a stroller or wheelchair. If you don't own one, most parks have them for rent at the park entrance. I would not dare go to a theme park without Jaycee's medical stroller. The stroller allows her to save her strength for rides and shows. If you have never used a wheelchair with your child, you might feel awkward at first, but please consider giving it a try. This will save your child's stamina, keep your child safer, and most likely decrease some of your stress.

3. Plan your day around your child's needs.
We know that Jaycee's energy declines as the day progresses, so we always get to the parks at their opening time. This will help her get more fun done before she tires. Your child may be the opposite. Maybe they thrive at night. Now is no time to try to change their schedule preferences.

4. Split up.
You may also have to split up with your group to allow everyone to enjoy what they are interested in. Jaycee and I will sometimes watch a music or character show (she loves both of these) to give her a chance to sit and rest while my husband and son do activities that better interest them. There is no way we could do everything all day together as a family, and that is ok. Most of the day, we are together.

5. Bring helpers.
The first time I took Jaycee to a theme park, I was extremely nervous. I brought both of her grandmas with me. They enjoyed spending time with my two kids, and I had more than enough help. I didn't necessarily need two extra people, but it spread the workload out more conveniently. It is also made bathroom breaks and swimsuit changing more manageable with an extra person. Now, that the kids are older, I don't need extra helpers as long as my husband is with me. Do not be afraid to ask for help!
Jaycee and her brother enjoying a ride

You can do it! You can take your child to a theme park successfully. You may not stay all day or get to do everything you want. You may have to make adjustments, but it can be done. Now, go to it!
submit to reddit

Thursday, July 14, 2016

Therapy Tip: Choosing Toys for Your Child with Special Needs

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother a of a child with special needs.

Today's tip is:

Choosing Toys for your Child with Special Needs

There are no shortages of toys available for any child. But, what about the child with special needs? Do they need special (and more expensive) toys?

Toys come in all shapes, sizes, and prices. Some are noisy while others are quiet. Some are larger than the child themselves. Some are colorful and others are plain.

Toys are available in many different stores and websites. But which ones are really good for building language and vocabulary?

Having been a speech-language pathologist in the birth to three program for 10 years now, I have seen many different toys. Parents of children I work with often want to know which toys are best because they want to help their child's language development. Because children learn through play early on, having the "right" toy can be helpful.

Here are three guidelines to think about when selecting toys for your child with language or developmental delays.

1. You probably do not need to look at speciality stores to find a toy.
You can find exceptional toys to target a variety of language tasks anywhere. The majority of books and toys that I purchase for my therapy activities are from Dollar stores, Wal-Mart, and Target. I do purchase some through speciality websites, however this is not the norm. Toys for me are an investment as a therapist. For families, toys are usually a short term necessity. For this reason, I like to find toys that fit language goals in the least expensive manner and recommend that parents do the same.

2. Consider the child's developmental age instead of their chronological age.
I love how most toys have a suggested age on the box. This helps guide parents (and grandparents) into developmentally appropriate activites and toys. When a toddler is receiving speech-language therapy, their developmental age may not be the same as their chronological age. This means they may be functioning at an 18 month level when they are 24 months old. The functioning level is the age to look at when buying toys. Choosing toys based on this should lead to the child being less frustrated  with a toy that may be too difficult for them.

3. Boring, basic toys are best!
Plain toys with little bells and whistles may sometimes be overlooked in stores. Instead, we are often drawn to the toys that have electronic components with flashing lights, noisemakers, or both. These busy toys do serve a purpose. But for the young child with delays, I avoid them. Too often a child with little language will tend to passively listen to these noisy toys or get too involved jn activating the electronic component. Basic toys are best for encouraging the child to interact with another person  to socialize and learn language. Some of my favorite toddler toys that I feel are good, basic toys are: potato head, nesting cups, balls, play food sets, blocks, wind up toys, shape sorters, bubbles, and Little People sets. In general, I love products made by Melissa and Doug because they are durable and generally allow for creative play.

If you have a toddler with language delays or a development delay, do not overthink it when it comes to buying toys. You are the child's best teacher -not the toy- so remember that!

submit to reddit

Tuesday, July 12, 2016

What I Learned from a Selfish Prayer for My Child

After Jaycee was born back in 2006, I prayed intensely for her. I believed in the power of prayer and faith. For that reason, it was my Christian instinct to pray for her to thrive even with her Down syndrome.

As I had been taught by religious teachers, I made a list of things to pray for about Jaycee. Some of the things on the list were for Jaycee to:
-live a long, healthy life (still my prayer)
-be able to read and write
-thrive in school and not need special education
-walk and talk even hitting developmental milestones earlier than expected
-not be impacted by the presence of her extra chromosome

I prayed and prayed for Jaycee. I believed she could grow up and accomplish and unbelievable things with God's help. I wanted her to be the miracle child-the one that would be in regular education, clear speech, and having great successes despite having Down syndrome. Of course, I would give God all the credit.

Then one day, I was slapped in the face with a thought after a few weeks of praying through my list. It was one of those thoughts that came out of nowhere, leaving me to credit it to God.

Are you praying those things for Jaycee or for you?

I knew right away why the question came. It stopped me in my tracks. I knew at that moment in time, I was praying for Jaycee to thrive and do well for my benefit even if I wasn't able to admit it to myself. Could my prayers for Jaycee actually be selfish in nature? Is that even possible?

I can honestly tell you that raising a child "forever" and having a child with possible large delays was frightening for me as a new, first time mother. Of course, having Jaycee not be impacted by her Down syndrome would be easier for her and I. Perhaps even praying these prayers of faith kept me in a somewhat protective state of denial.

The real questions that came from that original question were:
-If Jaycee was not "healed" the way I prayed, will I be able to cope?
-If Jaycee has many expected problems, what will that mean for her and I in the future?
-Am I ready to accept that reality?

These were hard questions to try to answer because they required complete honesty. They required me to look at possible futures for Jaycee and myself that I almost could not fathom.

So the question remained, was I praying the prayers for Jaycee to thrive for her or for me? And did it matter?

Perhaps I prayed for Jaycee to be my miracle child because I was fearful of the alternative. Perhaps fear motivated me to pray rather than faith. That was the issue in my heart that God wanted me to address. And, I did.

I found that I didn't need Jaycee to be healed and perfect. I didn't need her to be an articulate, amazing successful person with Down syndrome. The things I feared years ago weren't as bad as I had imagined. We have both lived through them, and we are both happy.

Over the years, I have had to keep myself in check. I have had to examine my prayers at times. What is my motivation for praying things for Jaycee?  If it is done in faith and love, then I am on the right track.

And, this what I have learned from selfish prayers long ago.

submit to reddit

Thursday, July 7, 2016

Therapy Tip: Helping the Busy Child Sit

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Helping the Busy Child Sit

Ever try to work with a child who just won't sit down? You can't finish a book with him. You can't get them to finish a puzzle. You can't get them to engage with you in play for more than a couple of minutes. Maybe they won't even sit for a meal. A child who won't sit or stay in a general area can be difficult.

Sitting or being in one small area is important so that the child will:
-Engage socially with another person
-Improve attention span
-Improve listening skills
-Have an opportunity to watch and learn from an adult model
-Learn an important social skill that will transfer to other settings (sitting for church or a restaurant)

In early intervention play-based therapy, I want a child to be near me. I don't necessarily need them to sit on their bottom for the entire session. But, I do need them close to me so I can model language and play skills. Most children can sit for short periods of time in speech therapy sessions with little to no problems.

But then there's some that just struggle. I do not like to physically hold the child on my lap or on the parent's lap. Usually, the child who doesn't like to sit doesn't like being held either, so this is usually not a good option. So, here are some things that I try to help the child be more success at sitting and engaging while using a hands-off approach.

1. A small blanket or towel
Set a small blanket or towel on the floor as a visual boundary of where the child is expected to stay. The rule is that the toys stay on the blanket or towel. If the child gets up and moves, the toys stay on the blanket. This teaches them pretty quickly where the boundaries are. I prefer to use the family's blanket or towel that they have available and use the same one every week. I have had a good response from this method!

2. Position yourself for success
Sometimes the easiest way to keep a child in one place is to position them in a specific spot in the room. If there is a corner in the room or even a couch sectional, use this to your advantage. The child goes into the corner area. Toys or other small objects/furniture can also be used if needed to help enclose a small space for the child to help them stay put.

Using a blanket with a couch sectional to create a space

3. Toddler seats
Many children have a variety of small seats in their home available. High chairs, booster seats, and small recliners are some things I have seen and used in a family's home. Some people feel making a toddler sit to engage in play is unnatural and therefore not an appropriate method for early intervention therapy. Obviously, I don't feel this way. Children need to learn to sit so they can have success in outings with the family such as restaurants or shopping carts. If the child has no interest in sitting in their seat, you might try the seat in a different room in the house. I try to do something the child will think is fun in the seat like painting or play-doh to help them forget they might be annoyed by sitting. If the seat causes the child to cry or tantrum, then it's not a useful method.

4. Balls, boxes, etc.
While the previous three are my usual go to methods. I have known some therapists to use a big, therapy ball to position the child on top of while doing activities. I am not good at balancing kids on balls while doing another task. But, I have used a medium sized box in therapy sessions. Yes, I know that sounds strange. But, once in awhile I will have a child that loves to sit in a cardboard box. We color on the box and throw flashcards in and out of it. Sometimes, the best methods for sitting are the ones you stumble upon. I often carry my stuff in small plastic totes. They are the perfect height for a toddler to sit on. Similarly, some children have little wagons or swings. These are other good ways to help build up a child's tolerance to sitting.

Look around your house, the solution to helping your child learn to sit might be right there! Be patient and set realistic expectation. Five minutes might be a reasonable goal at first. Then you can track the time and work on increasing it.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

submit to reddit

Tuesday, July 5, 2016

The Weekend my Daughter Became a Princess

Our family has had its share of highs and lows. In May, we definitely experienced a low when Jaycee was in the Intensive Care Unit once again for a respiratory issue.

Her illness made life chaotic and scary for a few weeks and meant she missed the last few days of school. After the hospital stay, I was at home wasting time on Twitter when I read a tweet about a pageant for those with a significant Intellectual Disability and/or Developmental Disability called Butterfly Dreams.

I clicked on the link and read about it. I suppose I saw the link at the right time, because I was looking for our family's next high following our hospital low. For some reason, bravery took over, and I signed Jaycee up.

Jaycee is not a girly-girl. She tolerates dresses occasionally. I don't wear make-up or spend hours on my look. We are not the typical pageant people.

But, for some reason, this event interested me. It seemed less focused on the looks of the participant and more on celebrating the individuals.

Later that night, I told my husband, "I signed Jaycee up for a pageant today."

"Huh?" In all the years of he and I being together, he probably never expected those words to come out of my mouth.

He was on board. And so began our look for a dress and accessories for a date on the calendar that would be highly anticipated.

A few weeks later, we arrived for rehearsal. I was immediately surprised at volunteers who had memorized Jaycee's picture and name because they called her "Jaycee" before she even had her name tag on. From then on, it only got better.

We were immediately paired up with a PAL (Person Assisting with Love) who would be with Jaycee the rest of the weekend. The PAL helped Jaycee on stage and behind the scenes. I have to admit that I had reservations going into this about the PAL. We knew absolutely no one at this pageant. That means I would be entrusting my minimally verbal child who sometimes wanders off with a complete (but background checked) stranger. But, my fears were diminished after meeting Jaycee's PAL. They connected right away. We took time to learn about each other. The PAL quickly learned how to use Jaycee's communication device.

Jaycee's PAL and all of the many other volunteers were amazing. Everyone was kind, loving, and positive. I saw no "bad" encounter all weekend. There were times I drifted into a corner of the room observing the volunteers with their participants. There was nothing but love and friendship seen. It was rare to see so many people who appreciated people like my daughter.

Jaycee left rehearsal feeling excited. She kept signing, "Dancing, butterfly, church," which meant she was loved dancing at the Butterfly Pageant at the church (which was actually a school but whatever).

Pageant day arrived with smiles and excitement. We paid our entry "fee," which was a toy donation to a local charity. Jaycee's PAL took care of her for most of the day. I popped in and checked on them at times and assisted Jaycee in the bathroom. Her PAL led Jaycee through interviews with the judges. Jaycee was asked simple questions which she responded to using her communication device and sign language. After the interviews, the girls were treated to professional photographs. Then it was off to hair and make-up for some pampering (all free for the participants)

Jaycee getting pampered!

With the girls all ready to go, it was time for the talent showcase. Being our first time, we didn't sign Jaycee up for the optional talent showcase since we weren't able to explain this to her. Instead, Jaycee watched the showcase with us. It was funny at times, tear-jerking at other times, and all around fun. Each participant ended their performance with cheers and applause from the audience.

Then the magical moment arrived-pageant time! The girls were divided into different groups according to age. The males participating were the escorts for the girls on stage. The pageant started off with a choreographed group dance which made you want to stand and cheer when it was over. The family and friends with us in the audience all gushed over Jaycee and the other participants.

Then each participant was welcomed to the stage to introduce themselves and tell a little bit about them. If they were unable to speak or needed help, the PAL was there to help them through it. I sat nervously in my seat when Jaycee came center stage. Using her communication device, she told the audience her name, address, and about her cats. Of course, I cheered, "Go Jaycee!" as she left the stage. She did it!! In practice at home, she kept saying her name was Ava, so I was beyond excited that she gave correct information and a little tickled that she chose to give out her address. Maybe she wanted fan mail?

Jaycee waving to the crowd with her PAL

It was incredible learning about each participant. Their personalities shined while on stage. After a brief intermission, the evening wear portion of the pageant began. While we purchased Jaycee's dress, there was a meet-and-greet event prior to the pageant where participants were able to try on donated dresses. Since that event was so soon after the hospital stay, we were unable to attend.

This time, Jaycee was escorted across the stage by one of the male participants. Using information I had given on her application, the emcee read a little bit about Jaycee. She blew kisses, waved, and did her pose before walking off. I was so proud of the young girl I saw before me!

After all the participants were introduced and all male escorts crowned a prince, it was time to announce the pageant winners. Each age division was called to the stage. Every girl received a trophy and tiara and was crowned a princess. There was one girl in each division that was crowned a queen. Princess Jaycee took her tiara and trophy with a huge smile on her face.
The Princess
Jaycee had the best time at the pageant. It allowed her to demonstrate her independence from her father and I. It allowed her to show off her personality and abilities. She also got to experience something in this life that she would otherwise not have gotten to do because of her special needs. This experience moved my husband and I in ways we never expected. It was something we will never forget!

The following night after the pageant, Jaycee was unable to sleep. At 10 pm, I entered her room and asked her what was wrong. She signed, "Butterfly, dance, church." She was still so excited that she couldn't sleep. And yes, a week later she is still signing about her dance at church.

I hope and pray that every mother with a child with special needs gets a moment like I had...where they see their child celebrated and appreciated.

Butterfly Dreams is a non-profit organization which provides opportunities for "Differently-abled" individuals to reach their individual goals and enhance their current life by providing a safe platform where each person can embrace courage, develop life-long relationships, and openly communicate their passions to others. They currently have pageants in 4 states with dreams of being in more. They have been recognized and honored for their work by Jane Seymour and Kay Jewelers. Please take the time to learn more about them here:

submit to reddit