Thursday, September 21, 2017

Therapy Tip: Ways to Promote Independent Eating

Welcome to therapy Thursday!
This is the day that I give 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:

Ways to Promote Independent Eating

As a speech-language pathologist working with the birth-three population, I sometimes come across toddlers who are really struggling to use utensils to feed themselves. These toddlers often have low muscle tone and/or fine motor issues that make holding and using utensils difficult.

When Jaycee was a toddler, she struggled greatly with this. It wasn't until she was 3.5 years old when she was able to successfully and independently use a fork and a spoon. I tried everything to help her learn to eat by herself. Ultimately, it took practice and some maturity for her to develop the skill (along with occupational therapy). From all of our practicing, I learned some things I could do to help put her in the best position to succeed. Today, I'm sharing three of these things with you.

1. Get the right plate!
You might think any toddler plate will work when teaching a child to use utensils. For those toddlers that are having issues, they may benefit from using a deep toddler plate. Here is the deepest toddler plate I have at home.





It may look similar to the ones you have in your cabinet but this one is at least an inch deep. This depth is important when a child uses the sides of the plate to help food get onto the spoon. A plate with short sides or sides that curve out will make it more challenging for the child who is working on using utensils independently. A deep plate or a bowl will provide one level of support for the child. 


2. Make sure the plate is secure.
Another thing that needs to be looked at for some toddlers is the movement of the plate. If the toddler is really working to get the food on the utensil, the plate may slide or shift around which only causes more problems for the toddler. There are many plates available with suction cups on the bottle to combat this problem. These are great for chairs with plastic trays. But, I never really had a great suctioning plate that could withstand my daughter's attempts.

Recently, I came across the Happy Mat, which I absolutely love and is pictured above! This is a place mat and plate all in one. This automatically seals to the surface you set it on which keeps the plate stable while the child is trying to scoop against the plate. The other good thing about this product is that does have deep partitions which again helps the child scoop food onto their utensil much easier.


A great alternative to the Happy Mat or other items that promise to seal or suction is simple cabinet shelf liner. You can cut a piece of liner out for your child's plate to sit on. This should help minimize the movement of the plate while allowing the toddler to be more independent. This is a relatively inexpensive way to keep any plate you have in your cabinet more stable for the new feeder.


3. Get the right fork and spoon.
There are many different spoons and forks available in chain stores and online. I have a large collection of spoons but here are a few:





Depending on your child's issue, they may have more success with a specific type of spoon. There are spoons with thicker handles while some have thin handles. There are spoons made with flatter bowls while others are typical toddler sized bowls. There are spoons with angled handles to help the toddler with limited hand and wrist movements. The differences in utensils are important for some feeding issues. For example, toddlers with Down syndrome who have smaller oral cavities in general, may benefit from spoons that have bowl sizes that are smaller. (Here's a post specifically about making spoon choices!) If your child receives occupational therapy or speech-language pathology, they should be able to observe your child eat and make a recommendation for you on which utensil might be most successful.

When I work with a child in therapy on self-feeding, I generally start with the fork. I may have to help the child stab a food in order to get it on the fork, but the child can work on rest. A fork is good because the child can turn the utensil any way he pleases and the food won't come off. Whereas, a spoon you often have to keep it positioned level to make sure it stays on. If a child won't eat any foods that can be forked, I try to select easy to stick foods that will help spooning be more successful. Examples of these include: mashed potatoes, pudding, and yogurt.



If your toddler is struggling, try some of these tips, consult your child's therapist, and keep practicing!

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

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Tuesday, September 19, 2017

How My Body Responds to My Daughter's Illnesses

I don't know what it's like to have a surgery. I'm never had one myself.

I don't know what it's like to be a small child in the hospital for an illness. I was a senior in high school the first (and only) time I was in the hospital for an illness.

I certainly don't know what it's like to be taken to the emergency room in the middle of the night due to respiratory distress. That's never happened to me.

I don't know how any of these things feel for my daughter, who has experienced them all many times, but I DO know what it's like for the helpless parent in this scenario.

Whatever I have experienced in a health crisis is nothing compared to my daughter. I want to make that clear. I can't imagine what her post-hospital thoughts and problems are. With her limited verbal skills, I can only glean from the behaviors she displays later on.

As my daughter's caregiver though, I have had my own set of problems that stem from caring for a child with chronic health problems. I have been reluctant to share them because I don't want to seem like I'm trying to make her experiences about me. But, this is the side of the story I personally know. My body and mind have been changed forever from Jaycee's surgeries, emergency respiratory crises, and over 30 hospital admissions. Here's some things I have experienced from my daughter's health issues:


Hearing Beeps and Alarms
When Jaycee left the NICU after a 10 day stay, I came home "hearing" the beeps, dings, and alarms that I had been listening to nonstop at the hospital. There were no monitors at home, so there was absolutely nothing making these sounds. My brain got accustomed to the constant noises in the NICU and had to adjust back to silence. I thought it was such an odd phenomenon of hearing things that weren't real that first time, but it's happen several times to me after subsequent hospital stays with Jaycee. Now, I know that I may come home hearing beeps and alarms that aren't there, but they will leave in a day or two.

My Son Talking to Jaycee while she's in ICU on Day Time Bi-Pap Use
Nightmares
After an unplanned hospital stay, it is not uncommon for me to have nightmares about the hospital once we get home. Generally, the scarier the hospital stay the more intense the nightmares are and the longer I tend to have them. After a few days in the hospital for a less severe respiratory issue, I might have a nightmare or two within a week of being home. My nightmares aren't about serial killers or monsters. They are usually intense dreams about some aspect of the hospital.

After a few of Jaycee's very intense ICU stays that required a ventilator, I have had nightmares on and off for months. Most of them were hospital scene based. Many of them involved Jaycee being in the hospital struggling to breathe while I was lost in the hallways, trying to find her room. (If you are a dream analyst, feel free to message the meaning of that dream to me.) Sometimes, I have woken up from these dreams with a racing heart and fast breathing. Sometimes, I wake up confused about where I'm at, especially if we have just gotten home from the hospital. I have to remind myself that she and I are both safe at home.

I learned too that watching movies or television shows that are hospital based can trigger nightmares. For awhile, I was watching reruns of the sitcom "Scrubs" before bed. I started having nightmares again out of the blue. Even though nothing scary was happening in the comedic show, something about seeing the hospital scenes depicted triggered something in my brain.

Muscle Aches and Tightness
This is the most frequent and long term issue I have. The muscles in my arms, neck, and shoulders get unbelievably tight. At first, I blamed the tightness on the lifting and moving I did with Jaycee during an admission. It took me months and months (maybe a year) to realize my tight muscles were a result of the stress of caring for someone in the hospital so much. My muscles became so tight that I physically could not make them relax. I tried a technique called progressive relaxation where you tighten and relax your muscles in a certain sequence to get your whole body in a state of relaxation. I literally could not relax certain muscles no matter how focused I was.

The tightness eventually led to my left hand going numb, and that's when I started to understand I had a real problem. I lived on nightly Bio Freeze or Icy Hot applications. For a time in my life, I made weekly massage therapy appointments. These were not luxurious appointments, these were a necessity. Every therapist commented on my knots and the extreme tightness of my muscles. All of them asked me if I had stress in my life. One described massaging my neck and shoulders as pressing against a hard rock. I finally got to a place where my muscles could relax. I won't say I'm a 100% better, but I can recognize the tightness quicker now and try to take a more proactive approach.

Teeth Grinding
At one dental appointment, I was asked if I was aware of my nighttime tooth grinding. I wasn't. The dentist showed me the places on my mouth which indicated some serious grinding. After he made me aware, I did catch myself sometimes grinding when I was just starting to wake up. I ended up getting a night guard made from my dentist, because clearly I had a problem. I'm not sure when it started, but I can tell you the grinding gets worse with the stress I feel during illnesses with Jaycee.

The night guard has helped, but I don't always remember to pack it when an emergent illness arises. There have been times in the hospital that I have woken up in pain from intense grinding and jaw clenching. This is a problem for Jaycee too. When we drive to the hospital, sit in the emergency room, or wait for a doctor, she will grind her teeth SO LOUDLY!! She does this during the day while awake, but my problem happens at night when I can't control it.



There you go. Now, you know how my body has responded to my child's chronic health issues. I often wonder if she hears beeps and alarms that aren't there. I wonder if she is having nightmares about the hospital we just left. I wonder if she gets aches and pains from tight muscles after being stressed in the hospital. If I am a by-stander in this story, I wonder what all is happening to her. Perhaps, one day she'll be able to verbalize it to me. Until then, we'll just continue on and hope that the next illness is a long way off.

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Thursday, September 14, 2017

Therapy Tip: Alternatives to Sippy Cups

It's therapy Thursday! Hooray!
This is the day that I share a tip based upon my experiences as a pediatric speech-language pathologist and a parent of a child with a disability. Today's tip is:

Alternatives to Sippy Cups


After bottles, most parents offer their child sippy cups. Sippy cups are often a favored choice by parents for many reasons with the main one being that they avoid spills and leaks. But, they aren't favored by specialists like me.

But, hang on! I am a realist. I understand that sippy cups have their uses. For a child who is traveling or tends to throw things, a sippy cup is helpful. I'm not a total anti-sippy cup person, but there's something you need to know about these handy cups.

Sippy cups are not always the best for babies and toddlers who are already in speech therapy or have delays in development. When a baby is drinking from a bottle, the baby uses a suckle-swallow pattern to drink. The tongue is kept in a forward, low position to drink. A sippy cup essentially follows that same pattern. It encourages the tongue to stay in a low, forward position.

For children with low muscle tone or diagnoses such as Down syndrome, the sippy cup encourages the very thing (tongue forward position) that speech-language pathologist often are trying to discourage.

For these reasons, many therapists will offer alternatives to sippy cups. These alternatives do a few things. They encourage the toddler's tongue to retract and have more elevated movements.

A straw cup or an ordinary open cup are ideal alternatives to sippy cups that are easily found. Not every child has the motor abilities to drink from a straw or an open cup successfully. Therefore, I'm going to share some cups I have used with toddlers in my therapy practice. Below are cups that I have personally used. These cups are temporary tools to teach straw or open cup drinking. These are generally not needed long term because they are used simply to teach the drinking method to the small child. Some children work with one of these cups for a few weeks before moving on while others need more time to learn where their lips and tongue should go to drink successfully.

Reflo Cup
I found this cup this year and have started trialing it with some of the children I see in therapy. I really like this product! The cup basically has this special valve inserted inside their otherwise open cup. It slows the rate of which the water comes out of the cup. This is a great way to teach open cup drinking while the child learns how to tip a regular open cup and control the water flow rate. The top of the cup is just like an ordinary cup, which requires lip closure and tongue retraction in order to be successful.


The Honey Bear
The Honey Bear has become a staple item in my therapy practice. This is the cup I use to teach a child to drink from a straw when a child has absolutely no concept of straw drinking. I can gently squeeze this cup to assist in bringing the liquid up and in the child's mouth. You can achieve a similar effect using a standard juice box. However if a thin liquid comes out to quickly, I can put applesauce in the honey bear cup in order to teach the child to straw drink. I have used the Honey Bear multiple times to help children learn to straw drink.


Infa Trainer Cup
This cup is similar to the Reflo cup but with some differences. It slows the liquid before it comes out so that it can more easily by managed by toddlers learning to drink. By simply twisting the lid, the flow rate can be changed to a higher or lower rate. There are three flow rates to choose from. This does have a spill resistant design, so that is a plus with this cup. The children I have worked with generally have more trouble learning open cup drinking with this cup because of the spouted opening, but I still think it's a good option for some.

Recessed Lid Cup
This cup has a very simple design. The lid of the cup is, as it's name suggests, recessed. Therefore, this cup can be used for open cup training, but it can also accommodate a straw too. I like this cup because the lid is recessed, which makes the lips close on the cup as if it were a regular open cup. The flow rate is reduced by the small holes in the lid. This cup also provides handles, which is more helpful for some children. This can be another great option for children who need the water to flow out of the cup more slowly to open cup drink.



There are many widely available alternatives to sippy cups. When a child just can't simply do a straw cup or an open cup, these are some great options for training. Determining which cup is more appropriate requires one to look at what is hindering the child's progress. Your child's therapist should be able to help guide you through this process if you have trouble deciding which one to try. One of these cups could be a key to your child's progress, so don't be afraid to give one a try.


Therapy Thursday is for educational purposes only and not intended as therapeutic advice. Please consult your child's speech-language pathologist if you want specifics on how to use these cups. 

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Tuesday, September 12, 2017

Am I Being Real?

"Don't you ever struggle?"

I was surprised I was asked this question, because I thought everyone knew I have struggled. I've questioned my faith, I have fought post-partum depression, and have wanted to throw in the towel. I have cried many tears after every diagnosis my child received, and experienced uncontrollable anxiety in response to some of her delays and illnesses.

I have hinted at some of these issues in my writing. But, I suppose that much of my writing does focus on the positives instead of the negatives. There's a few reasons why I don't often talk about my ugly feelings and struggles that pertain to my daughter's diagnoses. The first being that even though I still have occasional struggles mentally and emotionally, I have grown so much. If I would have been writing during the first 3 years of my daughter's life, I guarantee you that I would have won the world's most depressing blog award. I was completely overwhelmed by Down syndrome, the heart defect and surgery, the medications, the developmental delays, therapy appointments, doctor's appointments, and feeling like I was never doing enough. Yes, I struggled.

My daughter and I have been together for 11 years now. I know the Jaycee beyond the diagnosis. Let me tell you, she's a pretty great child! Initially, I had a hard time finding Jaycee in the all the labels and medical problems at the beginning. But, my feelings are much different now. I am not overwhelmed by Down syndrome, her delays, and her Intellectual Disability. I'm just at a different place where the struggles are not front and center.
I may have dressed up as Barney a few times for Jaycee while she was growing up. That's love folks!
The other reason I don't share all my ugly feelings on here is that I know for a fact that some people who are considering abortions look at my blog. I don't want negative post after negative post on my blog, because I don't think that would represent how I really feel about my daughter. I would choose my daughter a million times over. After all, every parent has times that are hard for their child. A typically developing, healthy child can be bullied at school, be unbelievably disrespectful to parents, and cause all sorts of heartache and headaches for parents. Nearly every parent has some problem with their child, but I do feel that fact is overlooked by some outsiders looking into the world of disability. No child is guaranteed to excel academically, socially, or athletically-Down syndrome or not.

Still, there have been some rough patches in my parenting journey. Sure, it wasn't fun changing a 4 year old's diaper. Yes, I use to break into a sweat with the thought of taking my daughter out in public by myself because she was going to run off from me. And to be honest, the lack of babysitters and respite care has been a real problem for years. Please don't get me started on the medical bills! I think my family could have taken a dozen or so trips to Disney on what we've spent.

So I ask myself, "Am I being real on here?"

If I am not honest about ALL of my feelings, am I alienating some people? Are there some struggling parents who read my blog who think every parent is always happy? Do they read my posts and feel alone? I hope not.

I recall a few years ago being in an online Down syndrome group of moms. One mom commented that she often "forgot her son had Down syndrome." Another mom bravely wrote, "I can think of nothing else but my son's Down syndrome." Then all hell erupted on this online Down syndrome community. Moms took sides. Some claimed that a "good" mother should be able to see the past the diagnosis. Others (like myself) defended the mother because there are some times in life when the diagnosis does seem to take center stage of life though no one intends for it to be that way. The group was never the same after that heated discussion.

That online feud has stuck with me years later. I never want to be the person who causes a mom to feel bad about their feelings. I don't want to come across as someone who seems to say, "I'm doing great. Why aren't you?"

The truth is that I have struggled. I've had moments when I have wanted to throw the covers over my head and stay in bed all day. I've envied other parents whose "big" problems would be a piece of cake for me.

But you know what?

I DO get out of bed every day. I face the problems we have and try to learn something from them. I love my daughter fiercely (and my husband and son). I experience short lived heartache, and then I experience tremendous joy! We have a rough patch, and then we have some very calm weeks and months. I can't imagine my life without her nor do I want to! Yes, there are hard times, but there are really, really good times too.

That is the REAL me!


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Thursday, September 7, 2017

Therapy Tip: Spoons for Feeding Issues

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

Spoons for Toddler Feeding Issues

Working with toddlers, I run into a variety of feeding related issues that require intervention. Most of my feeding clients need help moving through textures. These kids may be orally defensive, gag easily, and even vomit with dietary changes. I also see kids who have a very restrictive diet. These children generally eat from one or two food groups (grains), and their problems are much more serious than just "picky eating." These kids too may have gagging or some other response when a new food is introduced. Other children I see may have low muscle tone or lack a chewing response that requires intervention as well.

Every child in feeding therapy is unique. Each has their own preferred foods, reactions to new foods, and physical responses to changes. Feeding therapy is very individualized and requires lots of brainstorming and trial-and-error. There are many, many things that go into feeding therapy, but today I'll address just one aspect-spoons.

The utensils that are used with a child may have a role in feeding intervention. Utensils are never THE fix to a solution, but they CAN be one tool or factor in helping a toddler. Today, I'm going to share a few of the types of spoons I commonly use in feeding therapy.
-The Maroon Spoons
Maroon spoons look simple, but they are unique. They have a very flat bowl. This flatness does a couple of things. First, there is no edge on the spoon, which benefits some children. Some toddler spoons are very deep and require strong lip movements to remove the food. The design of this spoon makes this much easier for children who have poor lip closure to eat successfully. The smaller maroon spoon, which is what I typically use with toddlers, limits the bite size that a feeder can give, which may be important for those who gag easily.

I personally used this spoon when my daughter with Down syndrome was eating baby foods. The difference between standard baby spoons and the maroon spoons was remarkable. With her low muscle tone, poor lip closure, and tongue protrusion, these spoons made meal times easier for her.  

If a flat bowled spoon is what you are seeking, there are some cheaper options that can be found in stores. I have found that the Kroger and Wal-Mart "take and toss" spoons have very flat bowls that meet the needs for some of my clients. The quality isn't as good because you get what you pay for, but it is another option. 
I love, love, love textured spoons! There are a few different options for textured spoons, but the ones pictured above are my favorite. Like the maroon spoon, they have a very flat bowl. Therefore, they are useful for the same types of children as the maroon spoon, but offer one additional feature. On the bottom of the spoon, there are small ridges or bumps that provide the tongue with a new feeling during feedings.

The texture on the spoon does a couple of things. First, it provides more feedback for the tongue giving more intra-oral awareness. Secondly, it provides a way to work on texture transitions. This is the reason I use textured spoons in therapy most often. If I have a child who eats Stage 2 baby food without incident but has a major negative response (gagging, vomiting) to the next stage, then I like to use textured spoons to fill in the gap. By keeping the child on Stage 2 foods but changing to a textured spoon, the child can get accustomed to a new texture via the utensil while their known food does not change. Generally, the toddlers will notice the change and sometimes gag with the change in spoon, but I can use this spoon to desensitize them. Sometimes, I can only use the textured spoon for a few bites because the reaction is so severe, but I can keep working to build up to a full feed using these spoons. 

Like maroon spoons, the manufacturer cautions using these spoons on children who will clamp down and bite on these spoons because they could potentially break them. I have never had a problem with this, but it is something I warn parents about. I never allow a toddler to use a textured spoon without adult supervision. 

If you have a DnZ vibe, then the spoon tip option is another handy tool to have in feeding therapy. Again, these tips have a flat bowl. (See a pattern in what I like?) By attaching these tips to a DnZ vibe, you can then use vibration as another way to provide a different input for the child who is struggling with oral aversions or texture changes. I have had some children who had no problems with the textured spoon but did exhibit a negative response when this tip was added with the vibration from the DnZ vibe. Therefore, the vibration gave me a transitional method when bridging the gap between two different texture phases. The vibration also gives the inside of the mouth more input, increasing the oral awareness on the tongue, lips, and cheeks during feeding. This oral awareness is important to achieve for those with low muscle tone. 

-Angled Spoons
Sometimes in feeding therapy, things progress to the point where a child needs to work on self-feeding. Spoons and forks that are angled do sometimes help a child be more successful with scooping food and placing it inside their mouth. The toddler's wrist does not have to make as many movements when a spoon is already angled, which can be helpful for children that have delays in fine motor skills. There are many angled spoons on the market and some options are available in common stores like Babies-R-Us. However, the spoons may all be slightly different.

Besides the angle, you need to look at the spoon bowl depth and handle thickness. Here a deeper bowl may be more beneficial as things won't spill off of the spoon before getting it to the child's mouth. If you are working on sticky, easy to scoop foods like pudding or mashed potatoes, then a flat bowl will still be appropriate. A thick handle may be easier for some children to hold but possibly too large for those with small hands or fingers. Trial-and-error may be necessary to find the perfect angled spoon, but these can be helpful for aiding in self-feeding.


In short, spoons are just ONE aspect of feeding therapy I consider in my practice, but sometimes they can be a very crucial piece that leads to success. I hope that you have some new things to consider when choosing a spoon for your toddler who has a feeding issue.



Therapy Thursday is for educational purposes only and not intended as therapeutic advice. Please consult your child's therapist before trying these spoons, and always follow the manufacturers' instructions on use.
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Tuesday, September 5, 2017

A Bundle of Joy For A Diagnosis

Thanks to technology and social media, it is easy to meet people all over the world on a journey similar to your own. I came across Melanie Gomez through a writing group on Facebook. Like me, she was passionate about sharing her experiences of caring for a child with a disability as a person of faith. When she announced to our little group that she would be publishing a book and was looking for some volunteers to read and review it, I gladly volunteered. 

It has been 11 years ago since my daughter was diagnosed at birth with Down syndrome and an AV canal heart defect. The diagnosis was initially a shock as I was preparing for a healthy baby girl. As you can imagine though, in 11 years, I have worked through many emotions and thoughts. Things that seemed overwhelming back then are just not now. But, I didn't want to read Melanie's book for my daughter's diagnosis. I wanted it for my son's. 

For a year I lived with the idea that my son could have Ehlers-Danlos syndrome. A local doctor suggested the diagnosis but it took slightly over a year to get into a genetics doctor who could officially diagnosis the syndrome. I spent that year reading, having a range of emotions, talking myself out of the diagnosis, and then convincing myself that he probably had it. Three months ago, my 8 year old son was officially diagnosed. I had a year to prepare for the diagnosis, but it was final at that point. I had a second child with a diagnosis, so this book came at a timely moment for me. 

Bundle of Joy: A Devotional to Accompany Your Child's Diagnosis is a short book comprised of two parts. In Part 1, Melanie tells the story of how her son Nicolas was diagnosed with medical issues and a genetic condition as a baby. (I'll let you read the book to learn the specifics.) Melanie tells how her son was finally given a surprising diagnosis, the fears she had, and the thoughts that came while waiting for the answers. She, like me, bounced between thinking everything was fine and worrying that they weren't during the waiting time.

Melanie's son is now 16, so her family is well beyond those scary first few years of adjustment and tackling unknowns. As I read through her book, it is evident that the author writes as someone with the wisdom and perspective that only time can give. When you have a baby with a diagnosis, there are many worries and fears you have for the future. When you are told your child may have severe limitations, you wonder what your child may be able to do and if/how you will be able to raise this child. These questions in your head can be almost paralyzing, which is what Melanie tries to address in Part 2. 


In the second and last part of the book, there are 14 chapters or devotionals. Each chapter is 2.5-3 pages long, so they are short enough for a busy mom to digest in a relatively small amount of time. The length of the book is a positive for me because when your child is diagnosed, you are often given lots of information to read. I often got overwhelmed by the stack of helpful pamphlets and books that came home with my daughter. The longer the book was; the longer I put it aside. The length of these devotionals should not overwhelm a new mom who has other things on her mind.

Each devotional has a short scripture listed first followed by Melanie's thoughts on various subjects such as Peace, Why, or Choose. Though the chapters are short, there were several times I read a very thought-provoking line that made me say, "Wow!" Again, the wisdom that comes from a person who has been on this journey for 16 years is something that new moms need to read. Each chapter ends with an opportunity for reflection where Melanie asks the reader to think about one aspect within their current situation in a new way.

While Melanie's book title may indicate that it is geared towards moms of babies who are diagnosed, I feel this book is appropriate for any mother whose child receives a life-changing diagnosis. I appreciated reading this book when I did. I needed to be reminded of things that I was sure of at one time. I also needed to hear another mother's story that reminded me that I am not alone in my thoughts, feelings, and worries, but I don't have to let those negative things overpower the good. Every child truly is a bundle of joy, and it's important to not let a diagnosis steal the joy a child brings.

If you have a child who was recently diagnosed, then please consider buying this book. This would also make a great gift for a family member in your life who finds themselves dealing with a diagnosis as well.

You can read more of Melanie's writing at https://redefinespecial.com/. If you want to purchase the book from Amazon, click here.

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Thursday, August 31, 2017

Therapy Tip: To Sign or Not to Sign

Welcome 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:

To Use Sign Language or Not To Use Sign Language



Sign language is sometimes brought up in my work with toddlers with language delays. Parents seem to have different points of view on the subject.

Some parents are interested in learning sign language to help their toddler who is not yet speaking. They see sign language as a temporary tool that can help their child communicate. These parents seem to understand that sign language allows a child to learn to express a word in sign and use it meaningfully. This is opposed to a child who merely grunts and points at random to mean a variety of things. The message becomes clearer when the child can sign "eat" or "drink" or "cookie" or "milk." They can start to build an expressive vocabulary that is taking a sign form rather than a spoken form.

Then I have other parents who have serious reservations. Some believe that signing may prevent the child from wanting to use words. They worry that successful signing may lead to the child not wanting to speak instead. Other parents see signing as an inefficient use of therapy time. They don't want me "wasting" time in sessions teaching the child signs when I should be teaching spoken language instead. Some families find learning signs overwhelming and confusing. The family may have a very busy life, and learning sign language may be too much for them.

As a speech-language pathologist, I do consider the parent's preference on signing. However, I do share the positives about signing. Plus, there is plenty of research on this subject. There is no need to fear if signing is appropriate. The research is clear. (Signing Time has a list of many research links.) Sign language does NOT hinder the acquisition or use of spoken language. In fact, it sometimes helps a child understand words or concepts. Here's another great article on this subject.

As a speech-language pathologist, I'm pro-signing. However, I don't necessarily teach sign language to EVERY child I see in speech therapy. A child with a language delay doesn't always need to learn sign language. Sometimes, picture communication is another alternative form that is more appropriate. Other times, the toddler has a good spoken base vocabulary of 20-30 words and doesn't necessarily need to learn sign since they have a good foundational vocabulary.

There is one particular type of child in therapy that I am reluctant to teach signing to in sessions. This child is very quiet but uses many gestures and pointing to get their message to others. In this case, I am reluctant to start signing right away because this child likes to gesture and NOT try to speak. I, personally, have seen these children flourish with sign language but make no effort to use their voice in any way. Therefore, I choose not to do sign language with these children or at least in the beginning. My first objective in therapy would be to get the child to start vocalizing in any way in an effort to teach him to use his mouth first.

Still, there are many children with delays that benefit from using sign language. Adding sign language to speech therapy routines requires minimal changes to the session and takes relatively no time if incorporated naturally.

Here's some important things I try to remember when using sign language with toddlers with language delays:
-This should be obvious, but maybe it isn't. Whenever you are signing with your child, you will say the word you are signing. Doing both ensures the child will see the sign and hear the actual word. We always want to sign a word and say it as they are learning signs.

-If a child begins saying a word, then I don't care if the sign is used. Spoken words are the goal, so that is the driving force. Once in a while a parent will insist that the child do the sign for the word they are saying. Nope, nope, nope! If they drop the sign once they say a word, that's what we are hoping for.

-If you have a child with a diagnosis known to have language delays, sign language is a good communication to use in additional to verbal speech. Sometimes, pairing a word with a sign helps a child "see" the word and thus have a new way to comprehend it. Children with Down syndrome, for example, have been known to do well with sign language acquisition before they are able to verbally communicate. This was the case for my daughter.

-I don't care if a child imitates the sign perfectly. Some signs are challenging because they require finger dexterity that a toddler does not yet have. My daughter could not replicate signs exactly because of her Down syndrome as a toddler, but I recognized her sign approximations and didn't correct her attempts. As her fine motor skills improved, her signs naturally got more accurate.


Sign language is one tool that is used in speech therapy as a temporary method of communication for children with language delays. Like any therapeutic method, sign language has its pros and cons, but it may prove to be a positive way for children to begin communicating with their families. If you feel like sign language could help your child, talk to your child's speech-language pathologist.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, August 29, 2017

Things That Happen Between Skillet Concerts

Time gives the wonderful gift of perspective.

Have you ever looked back and asked yourself why you got so worried or upset over a situation? Maybe you looked back and realize things that felt VERY important at the time didn't really matter at all later.

The passage of time allows us to have a different viewpoint and understand things that can't be comprehended in present circumstances.

Since becoming a parent, there are certain thoughts that have ran through my head at various times:
Will it always be this hard?
Will my daughter live through this present health crisis?
Will my daughter be able to ____ one day?
What will my family look like in the future?

These are questions that can't be answered. Only time will allow me see what these answers will be.

Recently, God used the gift of time to show me something about some of my questions.

Let's go back....

In March 2010, my husband and I went on a date. Our son was 7 months old at the time, and our daughter was 4. In the 4 years of being a parent, our daughter had 2 open heart surgeries and 2 other minor surgeries. She had been in the hospital a few times for respiratory illnesses and required daily medications for her lungs. It had been a very rewarding and challenging 4 years.

My husband and I had been immersed in the world of raising a child with a developmental disability with chronic health problems, so taking this night to ourselves was rare. Our special night out included VIP tickets to see Skillet and Toby Mac. These are two Christian musical artists that we absolutely loved. It was the first time Toby Mac had a concert near us, and I was not going to miss out.

Skillet's part of the night was unforgettable. It was the first time my husband and I had seen fire blazing on stage in tune with music. I was smiling, laughing, and in an awe of what my eyes were seeing.

Then my crummy thoughts came.
Will I ever be able to do something like this with my daughter?
Back then, I never saw it happening. I couldn't take her out in public at the time without her running off or making a scene. I didn't even know with her lung and heart problems if she would be able to live to see double digits. This unanswerable question in my head tried to ruin the concert.

My joy momentarily waivered as I tried to put this question out of my head. As Toby Mac sang and danced, I couldn't help but feel happy. My husband and I had a great time!

Now, it's time to fast-forward to 2017....
Earlier this month, my husband, daughter, son, and I sat on a grassy hill inside a theme park listening to guitars and drums on a large stage. Skillet was performing, and the four of us were equally enthusiastic to hear our favorite songs.


My daughter pointed to the smoke that went off during a song and exclaimed, "Dada!!"

"Yes! That's cool isn't it," my husband told her.

As we sang and jumped and clapped and cheered, God reminded me of a thought that I had forgotten about.

God took me back to my last Skillet concert 7 years prior when I wondered if Jaycee would be able to do this very thing she was doing. For a second, I got a little teary eyed watching my kids enjoy the very loud music. The desire of my heart was fulfilled!

As I said, time gives a gift of perspective. I just have to be more patient to see the good things coming!


Here's Jaycee being amazed by Skillet:
video


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Thursday, August 24, 2017

Therapy Tip: Fall Sensory Bin

Welcome 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:

Fall Sensory Bin


Sensory bins are a fun and popular activity for young children. Sensory bins are simply containers filled with an item meant to provide some sort of texture to the child as they dig and feel around while playing. People often associate these with children with autism or sensory processing disorder, but these are useful and fun for all children.

Generally, the base of the sensory bin contains something like uncooked macaroni noodles, rice, beans, shredded paper, pom-poms, etc. (The picture above does not have a base yet added to it.) Next, additional items are placed in the bin based upon the fine motor skills that are being targeted or vocabulary that is being addressed.

Working in homes of toddlers, I try to make up small sensory bins several times a year. Traveling from home to home to conduct therapy sessions, I use a small container to serve as my sensory bin. A small container is perfect for one small child to play in and is easy for me transport. I generally don't fill the container completely full since some of the toddlers I work with will end up dumping out the contents.

For my fall sensory bin, I use a typical base item which is generally rice or noodles. Then, I use small fake pumpkins, turkeys, fake fall flowers, and fake leaves. You could use real leaves, but I try to avoid this due to my own child's allergies. The little turkeys I use were originally on top of cupcakes sold at a grocery store. So, I did purchase the cupcakes just to have the turkeys to keep for therapy. The pumpkins and fall leaves were purchased on the clearance rack at the Dollar General Store. I try not to spend too much money on these bins since toddlers are sort of destructive.

Using the items from my sensory bin, I can easily target many language skills in young language learners. These include:
-Adjectives: Red, orange, brown, little
-Actions: Hide (hide the turkey in the leaves), Jump (make the turkey jump in the leaves), Eat (make the turkey eat the pumpkin)
-2 word phrases: Red leaf, small pumpkin, eat pumpkin, two pumpkins, jump turkey
-Vocabulary: Turkey, leaf, pumpkin
-Counting: Since, I have multiple turkeys and pumpkins, I can count them as we find them. 

To work on these skills, I just play along side of the toddler as we dig through the bin and model words. It's that simple!

The most important thing about any sensory bin is to find something that will meaningfully engage the child you are working with. I hope this gives you an idea for creating your own. Don't forget to check out your local dollar store (and tops of cupcakes) for some seasonal items that are inexpensive for your bin!


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

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Tuesday, August 22, 2017

Child Number 2, Syndrome Number 2

"Elijah," the young nurse called from an open door.

I took my son's hand and walked with my husband towards the voice. I watched my son step on the scale and have his vital signs recorded. I have seen this scene about a hundred times before with his big sister who has Down syndrome. It was a familiar experience with the wrong child, and it felt weird.

We walked down the white, pristine hallway making our way in a small examination room. I helped my 7 year old son change into a hospital gown. I put a smile on my face and assured my son nothing scary would happen.

It was a true statement. There would be no bloodwork or tests today. There would just be a genetics doctor with the power to diagnose and predict a future. I looked forward to this day, and I dreaded it all at the same time. For over a year, we waited to meet with a doctor who could confirm or negate what was suspected. It had been an excruciating wait at times. Plenty of time to google. Plenty of time to think, notice new concerns, and ponder the future.

A knock at the door brought me back to reality. The first doctor appeared and said, "I've read Elijah's file, but I want to hear it from you. What brings you here today?"

I began with, "We met with a podiatrist over a year ago. I took him there because I was worried about his flat feet and the strange ways his toes bend at times. I was wondering if he needed foot orthotics. After a brief examination though, the podiatrist told me that the joints in toes and feet were loose, which was why I saw his toes bend in ways they shouldn't. But, he also told me that he was loose in all of his joints all over his body. He was worried that he had Ehlers-Danlos syndrome. We saw a dermatologist after that who agreed that his joints were loose and his skin seemed consistent with the diagnosis, but we needed a genetics doctor to confirm Ehlers-Danlos."

A common sight at my house. Elijah is doing something to his shoulder joint that I certainly can't do.
The doctor made notes as I answered her questions. We went back to the beginning, to the unremarkable pregnancy and delivery. I detailed the first time I noticed a "minor" problem. I explained how Elijah received physical therapy for a few weeks at age 2 for in-toeing and tripping while he tried to run. I mentioned that from toddlerhood, Elijah has always sat in a w-pattern on the floor, and he often slept on his belly with his knees tucked under him. I recalled the time when he was three and diagnosed with a developmental delay by our school district, showing large delays in fine and gross motor. That's when the label hypotonia was given as well. Elijah began occupational and physical therapy through the school at age 3 and continues PT five years later. I described his difficulty sitting down for long periods of time due to what he describes as being "uncomfortable." Because it's uncomfortable to sit, he stands which causes his legs to overwork and get sore.

The doctor did a brief examination before leaving the room to talk to her attending doctor. The next knock on the door brought both doctors inside. We answered and asked more questions.

"Why is a diagnosis important to you?" one of the doctors asked with a gentle tone.

"If he has this syndrome, then we want to know how to prepare for the future and help him now. As a couple, we have different views on some issues of Elijah's. My husband and I have disagreements on what is hard for him to do because of his muscle/joint issue and what is him just not putting in enough effort. We're hoping to stop some marital disputes over this," I jokingly said.

They assured us that the disagreements probably wouldn't all be resolved today.

Then, the examination began. Every inch of my son was examined. Some body parts received a quick visual inspection (like his ears). Others were given several moments of attention. His skin was felt and described as "soft and velvety." The joints were all manipulated and assessed. From my previous readings, I recognized part of their examination was the Beighton Score. The Beighton Score is one aspect of judging hypermobility (or looseness). Elijah scored 7/9; he was loose for sure. He could easily do things like bend his thumb to reach his forearm.


There were moments when I gasped while my son's legs were stretched and moved; I couldn't believe how loose his joints really were. After this very long examination, the doctors sat down to say what I expected.

"He does have Ehlers-Danlos syndrome, type hypermobility with hypotonia."

At that point, the doctors were on the hot seat, and we were allowed to ask the questions:
"What do we need to avoid to ensure his joint safety?"
"What can we do to help him?"
"When can we expect his pain and other common difficulties to get worse?"
"How is pain frequently managed?"

After all of our questions were answered, we shook hands and parted ways. 

That night at bedtime, I asked my son, "Did you understand what happened today? Do you have any questions?"

"I just know I'm really bendy."

"Yes," I replied, "and now we have a name for it. It's called Ehlers-Danlos which means you have really loose joints. You are fine now, but if you start to have pain or your body starts to feel different, then you need to let me know."

After prodding he bravely asked, "Am I going to have to go in the hospital or have a heart surgery like Jaycee?" 

I answered his questions before collapsing into my own bed. My mind was focused on one connection. I had two children diagnosed with two different syndromes. What are the chances of that?


With this child though, I am smarter. I know to take this diagnosis one step at a time instead of trying to digest possible outcomes and plan for future what-ifs right now. I know that Ehlers-Danlos is not the focus. It is a little boy who likes to ride dirt bikes, build with Legos, play guitar, and tour state capital buildings. For now, he is happy, and his world seems right. Why should I turn my world upside down? 
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Thursday, August 17, 2017

Therapy Tip: Should I Invest in Talk Tools?

It's Therapy Thursday!! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist (SLP) and a mom of a child with special needs. Today's tip is for both parents and professionals, which is:

Should I Invest in Talk Tools?

Have you ever heard of Talk Tools? If you are a speech-language pathologist (SLP), then you have surely heard something about them. If you are a parent of a child with Down syndrome, you may have heard of them at conferences, through parent articles, or word of mouth.

Talk Tools is a company that their website says provides "the best Oral-Placement Therapy (OPT) techniques, training, and tools to clients, therapists and parents." They state that their therapy techniques add a tactile component to feeding and speech therapy, enabling clients to “feel” the movements necessary for the development of speech clarity. To see everything they offer, visit their website. 


Talk Tools is a unique company offering trainings, parent education, tools, books, and step-by-step protocols on how to achieve certain goals like improving jaw strength, for example.

As an SLP, I heard about Talk Tools through professional literature. I considered taking some courses, but the live courses were seldom held in a town near me. The costs was also expensive, but any professional training usually is.

After my daughter with Down syndrome was born in 2006, I decided I NEEDED to learn more about the philosophy from Talk Tools. Jaycee's low muscle tone made sucking hard and tiring for her. When baby food was initiated, she had a reverse swallow and a significant gag response. As I moved her through more textures, vomiting started accompanying the gagging. This happened EVERY meal I attempted with any sort of texture. Straw drinking was absent for a long time. She had major issues her in mouth that was making feedings simply miserable for the both of us.

I can't speak for every SLP out there, but I can say that my coursework and fellowship did not prepare me for these problems. I knew basic information but I didn't feel confident about treating complex pediatric oral-sensory and muscle tone related feeding issues. I needed more education not just for Jaycee but for other children I had started seeing in my job in the birth-three program.

Enter Talk Tools. I took a course. Then another one. Then another on DVD. If I went to a Down syndrome conference, I'd sit in those courses as well. In case you are wondering some of the courses I have taken are: 3-Part Treatment for OPT, What You See in the Body is What you Get in the Mouth! Bridging the Gap Between NDT, Feeding, & Speech, Organizing the Mouth for Feeding and Speech, Pre-Feeding: Preparing the Oral Musculature, and finally Developing Oral-Motor and Feeding Skills in the Down syndrome Population.

As you may have guessed, I have found strategies and methods taught through Talk Tools to be a valuable part of my daughter's early progress and other children in my private speech practice. There are many websites and companies that sell tools to help with various sensory, feeding, drinking, or tone issues. With Talk Tools, you can buy the tool such as the red chewy tube, know the reasoning behind it, know how to best use the tool, and know the guidelines for when it's mastered. The information has given me professional confidence and has helped treat many children more successfully.

In my field of speech pathology, I have heard complaints about Talk Tools. The chief complaint has been that the company is making money off of courses which are promoting the purchasing of tools they also sell. Some also doubt the effectiveness of the tools. I disagree with these opinions. When you take a training course, especially the 3 Part Treatment course given live, then you can clearly understand the rationale and passion behind the company. You will also see that they aren't just trying to sell tools. They stress in their live workshops that the tools aren't as important as knowing why, how, and when to use them.

That being said, let's get back to the original question. Should YOU invest in Talk Tools? My advice is...YES!

For professionals, I personally feel the 3-Part Treatment course is essential for professionals to get a good foundation in feeding and oral-placement therapy. From there, you might find other courses helpful depending on what your caseload entails. There are many tools that I have used again and again in my private practice. Some of these include the Honey Bear straw drinking trainer, lip blocks, the toothette vibrator, and jaw grading bite blocks. If you have children on your caseload who are orally defensive, have difficulty moving through textures, or have low tone, then Talk Tools can help you in your practice.

For parents, I think you have to be choosey with Talk Tools. The costs of these products can add up, and you really need to know what you are doing to make it successful. Therefore, I would highly recommend finding a therapist who has taken Talk Tools trainings. Even better, locate a certified Talk Tools therapist on their website and schedule an evaluation. You may have to drive a distance to find one, but an evaluation should give you a detailed treatment program with step-by-step directions on how to proceed at home. If this isn't possible, there are many articles and parent geared videos or parent friendly conference opportunities such as at national Down syndrome ones that will help you get started. I just wouldn't start buying products at random off the website without knowing how to get your desired outcomes. You can always email the company too with any questions. I have emailed a few questions over the years as I have been working with my daughter and have been given a thoughtful and helpful response back.

In short, Talk Tools has been helpful in my personal and professional life, and I know other people have found them helpful as well. Should you invest in them? I did! So, yes I believe they may help many other families like mine.


Note: Talk Tools does certify professionals through a level training program. While I have taken coursework, I am not a "certified" Talk Tools therapist. These opinions are my own and am offering them for those who are considering Talk Tools.
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Wednesday, August 16, 2017

Guest Posts Wanted for DS Awareness Month

It's almost here!!! Hooray!!

What is almost here?

Down syndrome Awareness Month-coming in October!

The National Down syndrome Society (NDSS) calls for October to be a month of celebration of abilities and accomplishments of those with Down syndrome.

During the month of October, I participate in the 31 for 21 challenge--blogging 31 days in October for Trisomy 21 awareness. Keeping the NDSS's position in mind, last year I had several guest posts for a series I called "I Can." The posts featured a story about someone with Down syndrome that was meaningful to the family or highlighted the person's abilities. I had a few parents share about their child, one child with Down syndrome share something, and even a sibling. These posts were quite popular last year!

This year, I would like to feature more stories of people with Down syndrome during October celebrating their lives, interests, achievements, abilities, and personalities. Want to join me? Write a post about your loved one, email it to me, and then it may appear here during October. I will also share it on my social media accounts.

Here's what I'd like:

Theme: The post should share accomplishments, abilities, interests, or personalities of someone with DS. You can send me something outside of this if you have a different idea, but I may choose not to run with it.

Content: New or old content is welcomed. If you are a blogger and have a post you have published on your own site, you may send it my way for a reposting.

Word Count: No set number for this. Most of the posts were pretty short last year, but length is up to you.

Deadline to join in: I need all writings by September 25th. Only one post will be shared each day, so there are only 31 spots for posts available. I will let you know the date your post will be featured by September 30th at the latest.

Ready, write, and send:
-Please send your written post via email to evanasandy@gmail.com. You can type your post in the body of the email or send it as a Word attachment.
-Please, please, please send a picture with it that can be attached to your post.
-If you are a blogger, feel free to link back to your blog and/or write up a bio of you/your family.
-I may edit your piece for length or clarity. Curse words will be omitted.

Here are some examples from last year:

Meet Nate: I Can...

Meet Benjamin: I Can...

Meet My Brother

Meet Sophie: I Can...


Click HERE for the NDSS statement on Down syndrome Awareness month.

I can't wait to see the guest posts!!!



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Tuesday, August 15, 2017

Mom Prob: I Need a BFF

This is embarrassing to write.

I am a grown up woman who is going to whine about how I don't have a best friend.

It's a true statement though no matter how embarrassing. There is a hole in my life where a best friend should be. I feel it most whenever I am going through some struggles in life or a health crisis with my daughter.

Sure, I have a husband. But, we are usually stressed at the same time when there is a child health issue. He is a great listener, but there is a limit to the whines and concerns he can hear from me without losing his mind. Sometimes, I pick up the phone to call someone who has a female brain, but there's no one I can think of that has the time to listen to me.

That's when a thought pops in my head, "I have no friends."
Me with all my close friends : )
But, that's not accurate. I have numerous FaceBook friends who read about my adventures with my daughter and give likes or crying faces when appropriate or write a comment. This makes me feel connected to many people, but it's not enough.

I have a great mom and a few close family members who call or message me during hard times. I need these people in my life offering prayers, encouragement, and assistance in various forms.

I do have a handful of female friends who check on my family, come to my kids' birthday parties, and possibly have dinner with my family a time or two a year. I consider these girls in my inner circle. They understand my life more than most and love my children. We talk about getting together for some girl time, but we never do. Every mom is busy and has a family to take care of first. But not spending time together without kids present really makes it hard to develop a closer friend relationship.

I even have two female friends I have met with 1-2 times a year in person by ourselves for some well deserved female time without children. Amanda will answer a text from me at 5 am. How great is she? Tricia will respond to my very long messages and doesn't judge me when I say I'm struggling. She gets me, and I need her. These two girls are the people who I can count on in a pinch for prayers or encouragement. I hope I do the same for them too. But I doubt Amanda or Tricia would consider me their best friend. I've never been Tricia's house. I don't even know Amanda's favorite color. That's got to be a BFF requirement, right?

See, I DO have friends. But I don't have a female Best Friend.

Part of this is my fault. I have always been the person who just kept 1 or 2 friends in my inner circle. I was never the girl who spent her weekends with a large group of people. I always felt good about just having a friend or two until that friend was sick or missed school. Then I was alone.

After Jaycee was born, I made more mistakes in acquiring and keeping friends. I isolated myself for the first few years of her life. I missed weddings, baby showers, parties, and special events. Sometimes, I was guarding Jaycee from germs. Sometimes, I was avoiding all the social contact. Try socializing with people and making small talk while your child went through two open heart surgeries and needed intensive care at home. Small talk and complaints about mundane things is exhausting and meaningless when your child has been fighting for their life. Even now, this is still true at times for me.

Still, I have made mistakes. I have closed myself away from people. I have hesitated to reach out to people when I have needed to talk to someone. I haven't talked about the things on my heart because I didn't want to burden anyone. Some of my problems with Jaycee are just too much for some people to handle or at least I think they are. Some of my thoughts are just so unrelated to most people; I keep them inside wishing there was someone to release them to.

Perhaps, one day I'll have a female best friend. We'll have lunch. We'll cry. We'll laugh and have inside jokes. We'll buy each other birthday presents. We'll go Christmas shopping together. We'll have babysitters that can keep our kids. Our plans will never be broken because of a sick child. We'll see each other's homes. We'll know each other's favorite colors. It will be awesome!

Until then, I'll be thankful for my caring and patient husband. I'll treasure my mom, my aunt, and the other family members that are close by my side. I'll be thankful for the friends I do have, even if I wish we had more time to develop closer friendships. I'll be thankful for my kids who give me plenty of reasons to smile, and a God that hears my deepest cries when there's no one to talk to.
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Thursday, August 10, 2017

Therapy Tip: Making the Most of School Speech Therapy

Therapy Thursday is back!! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and the mother of a child with special needs. Today's tip is important for parents who have children in speech therapy in the school:

Making the Most of Speech Therapy Sessions During the School Year



It's that time of year when school is starting back. If you have a child with an IEP who will be receiving speech therapy this school year, then you need to know how to maximize your child's therapy. Speech therapy from the school is an important part of a child's education, since the child must be exhibiting some sort of delay or problem to receive it.

Although parents are part of the IEP team and planning process, parents are often left out of the day-to-day business that actually happens to work on the fulfillment of the IEP goals. Hopefully, your child's speech-language pathologist (SLP) keeps you informed of your child's progress, current targets, and allows times for conversations. If not, here's how you can make the most of it:

1. First, update the SLP. If something significant happened this summer to your child that could impact therapy, please let your child's SLP know. If your child had teeth pulled, ear infections, ear tubes placed, a tonsillectomy, hearing evaluations, or anything else dealing with the mouth/nose/ears, then please share this information with your child's SLP. This is information the SLP would want to know.

2. Find out what your child is working on in therapy. This information should be in your child's IEP. If you have lost it, you can ask for another copy. You need to know what your child is working on, so that you can help your child at home.

3. Find out when your child will receive therapy. SLPs have different ways of scheduling sessions, but I am guessing most SLPs have a set time that your child is penciled in for every week. You can ask your child's SLP if they are receiving speech therapy on a certain day/time. If you know when your child receives therapy, then you can try to avoid scheduling appointments during days that would result in missing school/therapy. The SLP may have a very full caseload and may not be able to make up the session if your child misses school that particular day.

4. Ask for updates. I hope your child's SLP is sending 'homework' practice or other notes home periodically (at least once a quarter) to let you know what your child is currently working on in sessions. If not, you can ask the SLP for updates. If you do request updates, please keep one thing in mind. The SLP is very busy and most likely has a large number of children on her caseload. The SLP is probably unable to check in with you every week or every session. When I say, feel free to ask for updates, please be reasonable. You can ask for an update every few weeks, every month, or every quarter so that you can stay in the loop. You may offer to do this in emails, texts, or a notebook that can be passed between the two of you.

5. Reinforce speech goals during homework. There are many ways to work on a target skill in reading, spelling, or other subjects. This is especially true if your child is working on fluency for stuttering treatment or a specific speech sound (i.e. /r/). If you are unsure of how to support your child's progress at home, then ask your SLP. Reinforcement at home is key to getting your child to progress faster. If you aren't involved in your child's treatment in some small way at home, then there is a missing element that needs to be addressed.


I hope your child's speech therapy will be beneficial this year, and that you and the SLP can work together to achieve those goals. Have a great school year!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Wednesday, August 9, 2017

Bored? Here Ya Go

During my blogging pause, I didn't stop writing completely.

Here are some links to pieces I wrote elsewhere. So if you're bored, here's something to click on and read. 



Wait! Summer Break Don't Go I haven't had enough time for fun this summer. Or have I?


God, Hospitals Make Me Angry I have a hard time being a Christian in the hospital. True story.


Me and My Terrible, Ungrateful Thoughts Sometimes I want a vacation from ALL of it.


Reading Your Bible Again? Thoughts on how we can show children we are committed to God.





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Tuesday, August 8, 2017

Who Was I This Summer Break?

Welcome back!

The summer blog pause is over, and I'm back to writing.

Summer break this year was (pause.....think of an adjective) unique.

Many things happened in the two months I have been away from the blog. Some of these intense events were planned, which is why I took a break. I'm not a writer who typically writes about current events in my life that are serious. I need time to process and emotionally work through them. 

There were times this summer when I sat back and asked, "Who am I?"

Seriously. Who was I?

Well, I seemed to be:


A sweet kiss in the hospital
-A Nurse: Being Jaycee's nurse is not a new role for me. I dose out medications and run her medical equipment daily. However, Jaycee had a fairly big surgery at the end of June to make space in her airway to treat her severe sleep apnea. We were told her recovery could be 3-10 days. It took 25 days for Jaycee to make a full recovery! Twenty-five days is long, by the way, when you are trying to give pain medications several times a day to a child who does not want to take extra medications and counting every ounce the child drinks. Not to mention, Jaycee had 2 different post-surgery bleeds that resulted in 2 additional hospital stays during this 25 day recovery. I'll write more on this subject another day, but my mommy nursing skills were challenged this summer!

-A Travelor: My family took two mini-vacations. We fulfilled my son's dream to visit our state capital (Springfield, IL) and enjoyed a three day history lesson. Well, my son and I enjoyed it. My daughter and husband maybe not as much. Our second little trip was to visit my family in Indiana. Family visits may seem boring, but my extended family is super fun. We had lots of laughs. My son got to see another state capital too, so he was in Heaven! We didn't travel far or have a large budget, but I did get to travel somewhere. I was thankful to be anywhere besides a hospital!

Jaycee at Lincoln's tomb with some assistance with Daddy
-A Mom of a Princess: My sweet little girl participated in a pageant for people with intellectual disabilities for the second time in her life. We loved watching Jaycee perform on stage and getting all dolled up. She absolutely loves it too! (You can read about last year's pageant here.) I like being the mom of a princess, and it's a memory we will treasure! 
Post Pageant picture with the family
-A Mom of another Child with a Diagnosis...AGAIN!: Most of my writings have been regarding my daughter's health issues and diagnoses. My other child, Elijah, has had (what I have always considered) minor issues with his motor skills and muscles. In June, it was confirmed that his issues won't be something that he will outgrow as he was diagnosed with a connective tissue disorder called Ehlers-Danlos syndrome. I'll write more on this subject another time, but I had some emotional issues to work through when I discovered that both of my children had life long diagnoses.

-Someone who Struggled: There were some happy times this summer. But, the hard times were hard. During Jaycee's time in the hospital, I struggled with anger. No really, I wanted to slap a few staff who I didn't feel were treating my daughter properly or professionally. How do you walk into a room and not know what surgery a kid just had? And how does that happen more than once? There were very frustrating moments during Jaycee's longer than expected recovery. It was stressful on my husband and I, and we didn't get a break for three weeks. In a crisis, I have this tendency to want to throw a pity party when things aren't going well. Those parties spiral me down into despair farther, which isn't helpful at all. Anyway, I struggled some this summer. But, now that some time has passed, I am feeling more optimistic and almost back to my normal self.


Well, that was me in a nutshell during my blogging pause. It feels good to be blogging again and back to my normal regular self. I'm ready to share some experiences and thoughts with you every week again.



See you on Thursdays for Therapy Thursday, my weekly tip on a therapy related subject. Tuesdays is my general blogging day on parenting and my life. As always, thanks for reading!
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