Thursday, September 22, 2016

Therapy Tip: Articulation Practice with Objects

Welcome to Therapy Thursday!

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

Today's tip is:

Articulation Practice with Objects

There are numerous ways to help a child who has articulation errors. Whether your child has difficulty producing the /s/ or /r/ or /b/ sound, there are many ways to practice this at home under the direction of the a speech-language pathologist.

Perhaps you have found a flashcard set targeting your child's sound. Great! Maybe your child's SLP has sent home worksheets for you to keep practicing at home. Wonderful! But, what if your child is bored with that? Or, what if you are a SLP looking for something else to do to practice these same old sounds again?

When I first started out working in a school district, I created dozens of these sound containers (pictured above). I purchased an embarrassing amount of Tupperware, labels, and then went rummaging around the house and stores to find things to put in them. I loved using these sound containers with the children! It changed up the sessions and gave us all a break from some drill and practice that happens in speech therapy.

Making these sound containers takes some time, but it is worth it. Here's how to do it:

Making your sound container:
1. You need containers with lids. I purchased some small containers of various sizes for mine.

2. If you are doing multiple sound containers, you will want to label them. On the side, I marked what the container was such as "initial t." On the lid of the container, I wrote on another label all the target words of the objects inside. You may forget what words the objects represent, so this is a must if you are doing many of these.

3. Find your objects! This takes time, especially if you are doing multiple containers and sounds. I looked through Barbie accessories, doll house objects, magnets, and small toys at dollar stores. Things that go in party treat bags are also good choices. If you are a parent making one or two containers for your child, you may not care if you use large objects. But, if you are making dozens of these boxes, then storage will become an issue. That is why I looked for small objects for mine.

The picture below shows what I did for my one of mine just to give you an idea. For the initial /t/ container, I used a magnet letter "t," a magnet number "two," a doll house "table," a small clock for "time," a Barbie "tennis shoe," a play food "tomato," a "tissue," and a truck for the word "toy." You may want to look through word lists on worksheets, books, or online to find ideas for possible objects to look for and put inside your container. Here's a website with word lists.

Tips for using your sound container:
-Due to possible choking hazards, you need to know who you are working with! This is not a good activity for toddlers due to the small size of the objects you may have in the containers. I used these sound containers with pre-school children and a few beginning elementary age students in private practice.

-You can simply give the child the objects in the container and have them name the objects or use the object word in a sentence, depending on what level your child is at.

-I have put these objects in a sensory bin (like with noodles and beans) and let them dig around to find the objects. This becomes a more functional way to practice the words.

-I have put them in a gift bag and have the child draw an object out one at a time without looking to add to the mystery of each item.

Yes, this activity does take some time and thought, but it will very useful and rewarding!

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

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Tuesday, September 20, 2016

My Issues with the Health Care System

I am grateful for all the medical care my child has received over the years. Without the knowledge of doctors and access to care, Jaycee would not be here.

I have been to many specialty appointments with Jaycee over the years. She has spent time in a couple of different emergency rooms and a few different hospitals for illnesses and surgeries. We have gotten to know our area's health care system well. Prior to Jaycee, I didn't have much experience with doctors or hospitals. In the past 10 years, I have had more experience with this system than I would like to have.

There are three things that really aggravate me about the health care system here where I live in America. If you are familiar with doctors and hospitals, you will probably identify with some of these.

1. Results from tests, labs, and x-rays are not quickly communicated to patients.
If there is a true emergency, the results of different tests are easy to get. Results come quickly in the hospital and can be obtained easily by asking a nurse or doctor. When tests or labs are done outpatient, the results are very slow to be communicated to patients. I find this very frustrating!

The doctor that orders labs for Jaycee is not present when we hold her down for the blood draw, deal with her fists of fury, and listen to her cries as she is often poked again and again to find a vein. If we go through all of that for blood work, then I want to know what the results are! We went through a considerable amount of pain to get them.

When I don't hear back from the doctors regarding labs and tests, I get worried.
-Did the doctor forget about them?
-Maybe they didn't call because they are normal.
-Maybe the labs are bad and no one remembered to follow up on them. Maybe there's something wrong and we will never know.
-Maybe the lab never ran the sample.

Because my mind can supply many scenarios, I would appreciate a call whether the labs are good or bad. I am grateful for the rare doctors that do call me within a couple of days. They get a gold star from me.

One of the things that I do like is the access to online medical records from our Children's hospital. I can go online and now obtain lab results a day later. I no longer have to wait for a nurse-though I still feel like they should call. I can make sure there is follow up when I see a lab that is out of normal range. I love that sometimes I have to point a particular bad lab out to the office, since the follow through just was not there. All these years later, it still amazes me how many labs and test results aren't communicated to the patient or their family when it's their insurance and co-payments paying for it.

2. The wait time in waiting rooms is sometimes ridiculous.
Doctors have waiting rooms for one reason- for us to wait. Some specialists we see are consistently on time. Others, I just dread going to because I know the wait is going to be so long. I don't understand why patients must have to wait and wait. I don't understand if the doctors are over-scheduled, if there was an emergency that pulled the doctor away, or if the doctor just showed up late. I don't mind waiting 15-20 minutes as that seems to be the standard minimum wait time for appointments. But long waits every time at an office signal to me that something is wrong with the doctor or the scheduler. I wish my time was valued as much as the doctor's time. Usually, there is no apology or an explanation for the delay. It's just expected that we wait for the doctor. I have spent more time in a waiting room with Jaycee than I ever wanted.

3. The wait to get into specialists is sometimes too long.
Picture this: You are told something may be wrong with your child. It's nothing life or death, but it is a diagnosis that may have life long consequences. Now imagine that you are told to wait 8-12 months to get in to a doctor to confirm a diagnosis. That's nice, right? That's the worst scenario we have had. But there are other less worse situations. Sometimes a test result comes back that requires us to see a specialist, but the wait is 4-6 weeks. That's 4-6 weeks I have spent googling the possible problem and playing out every scenario in my head. In time, I have learned that this too is standard. If it's not life-threatening then we are expected to wait until there is an opening. Just because the possible problem might be life changing for us, it doesn't mean we are a high priority to be seen.

I have other issues with the health care system like how ridiculous some things cost, but that's for another post another time.

What about you? What's your top 3 annoyances with the health care system?

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Thursday, September 15, 2016

Therapy Tip- The Problem with "OK"

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

Today's tip is:

The Problem with "OK"

When I was a graduate student, I spent a semester working in my university's Center for Autism as a speech-language pathologist (SLP) in training. At that time, the SLPs worked along side of those training in the field of Applied Behavior Analysis (ABA).

If there is one thing I remember most in our group sessions, it was Dr. Anthony Cuvo, a professor and clinical supervisor of the ABA clinicians and autism program, and his hatred of the word "OK." If anyone said the word OK to a child when we were giving them a direction, we would surely hear about it from him later.

I tried not to say "OK" when I was in group sessions treating children with autism, but it came out so naturally! After he educated us on the problems with saying "OK" when giving directives to a child, it all made sense. Though I found it hard to do!

Here in America we often say "OK" at the end of a direction. For example: "You need to go clean your room. OK?" "Put it in the box. OK?"  "Let's all get ready to have a bathroom break. OK?"

When we put an OK at the end of the sentence, we usually add it in to mean, "Did you hear me?"

Dr. Cuvo stressed to us that adding "OK" at the end of a directive was actually a way to give the child an out. It is as if we are asking the child if they want to complete the direction. When we add "OK," we are allowing the child to answer yes/no.

If they say no, then what are we going to do? We essentially asked them if they were OK with our direction. If they say no, we were the ones who foolishly offered them an out. Their refusal to comply is in part our fault.

Maybe in your part of the world, OK is not said very much. But, here where I live, OK is added in more than people realize. I had to really pay attention to what I was saying to the children I was treating. I had to make an effort to say things with no gray areas that also made a firmer stance. I had to remind myself that the direction I want them to follow should be firm, simple, and give no options for refusal.

All these years later, this principle has stuck with me, so now I pass it to you.

The direction should be the direction and nothing more. It should definitely not contain "OK" in it!

You may be reading this thinking this is a very small word to take an issue with, but sometimes the small things have a big impact.

Your challenge this week: Watch how often you say "OK" when giving your child a direction. Make an effort to give the direction and nothing more.

Think you can do it?
OK! Give it a try!

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

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Tuesday, September 13, 2016

My Thoughts on 'Born This Way' A&E

I have watched "Born This Way" a television reality show on A&E featuring young adults with Down syndrome and their families since its first season with great interest.

I found the idea of the show fascinating when I first heard about. As a speech-language pathologist, I have treated many children with delays, disabilities, or conditions, but I don't know what happens to these children when they grow up and start transitioning into adulthood. But most importantly, I watch the show as a mother of a 10 year old girl with Down syndrome.

Watching the show, it is easy to see that there are many abilities within the cast members. To describe a few of them for you, John is full of personality and a budding rapper. Megan is an excellent public speaker and advocate for Down syndrome as well as a hard worker at her business. Rachel is a caring friend and has a job in an office. Sean is a self-proclaimed ladies man.

During the first few episodes of season one, I wasn't sure if I would fully connect with the cast. You see, while my daughter has Down syndrome, Jaycee has many struggles -some of which are unrelated to Down syndrome. I have yet to meet another person with Down syndrome like Jaycee that has had two heart ablations for Wolff-Parkinson White syndrome, a rare defect of the heart's electrical signals. Jaycee also has a lung cyst and recurrent lung infections, which has led to twice daily airway clearance treatments for a couple of years now. My sweet daughter is also a very brilliant communicator, but she is not able to do so with many words. Severe childhood apraxia of speech (which can occur with Down syndrome) has prevented her from being able to form words clearly and produce all consonant and vowel sounds. She uses signs and her communication device primarily to "speak."

Yet, watching the show, I saw that the cast members all have their own struggles. I think for those of us who have minimally or nonverbal children, we often think that our children have it harder. Our children are limited in what they can express and question. I have no idea what my daughter's dreams and goals are because she cannot communicate that with me. I don't know what Jaycee understands about abstract concepts like God because she doesn't yet have the ability to ask questions to clarify. This truly does limit life in some ways.

While the cast of Born This Way are all verbal, I have clearly seen that their lives are complicated by other matters. The biggest issue this season for many cast members seems to be finding the balance between wanting independence, marriage, babies, and their own lives while trying to understand what it takes to make this happen. In the show, Megan is seen struggling to understand money and the concept of how much things really cost, which is vital to budgeting and living alone. There is instance after instance of cast members wanting real love from a member of the opposite sex but perhaps not always knowing how to go about that through proper steps. (I.E. Saying I love you way too soon, understanding the difference between a crush and love)

I have learned so much as a parent watching this show. As the parents try to teach and prepare their children for the things they want in life, I can relate to the decisions and fears they express in their interviews. As the children assert their independence, the parents must walk a fine line between allowing their children to try new things while keeping them safe with the information and supports needed.

While we are dealing with different issues in my home with a 10 year old child, I am starting to experience this for myself. Jaycee wants to be independent in the shower which is evidenced by her slamming the door in my face. (Good communication, right?) I also know that if she remembers to wash her hair, the shampoo will only go in one spot in the front of her head. This is really not a big deal, but I must find a happy medium where she does these things on her own but accepts my instructions to keep improving. Other similar situations have been popping up with Jaycee where I must answer the question, 'How important is it that I step in to help her do this better?" As I navigate these new waters, I am glad to see other parents tackling more difficult issues with their children on the show.
A scene with Rachel from the show

But the most amazing part of the show for me has been the casts' comments about their own lives. I wanted to cry when Rachel expressed her displeasure over her weight gain and the possibility that it's the reason why boys aren't interested in her. I felt for Steven who wants to date girls without disabilities but finds this almost impossible. When Elena described her fear as she watched her friend have a seizure, I saw the care and love in her. Cristina's jealousy with her fiancé is an issue that many couples must face and deal with.

If you have a family member with Down syndrome, I encourage you to watch this show. You will learn something and feel a connection to the cast that may give you some insight with your own loved one.

To learn more about the A&E show or watch episodes, visit their website.  Catch new episodes on Tuesday at 10/9c.
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Thursday, September 8, 2016

Therapy Tip-Using Crafts to Build Language

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

Using Crafts to Build Language

I love using simple crafts in my speech therapy sessions to work on language goals. I find it engaging for both me and the children as we change up our therapy routine. I primarily work with toddlers but crafts can be used with pre-school age or older children as well.

Dog puppet and a bee craft

One of my favorite sites to use to find craft ideas for toddlers I am working with is Even if something may be too difficult for toddlers, I can usually modify it to make it work. Sometimes, I look through my craft drawer and come up with a craft based upon the materials I have. Simple crafts are best, especially if you aren't sure of what the child's reaction will be. The craft itself isn't that important as long as it is simple enough for the toddler to complete in about 5-10 minutes or so.

Picnic basket from paper plates with food craft

Language goals addressed during craft time:
-Following directions is a main goal when doing a craft in therapy. Every step of the task is a direction to follow. For example, during the dog puppet craft I might walk the child through the task by saying: Choose 1 nose. Put glue on it. Flip it over. Now, pat it on to make sure it sticks. You can make it harder by giving a 2 step direction at once (Get the glue and put it right here.)
-Task completion is another big goal. This is really important for children who have an extremely short attention span or who get distracted easily. Having the child go through several steps of a craft to make something is a great way to address this problem.
-Concepts can also be addressed during crafts. Words like: top, bottom, side, 1, 2, blue, green, etc. can all be reinforced during crafts.
-Requesting items is another goal during crafts. You can have the child ask for a crayon or the glue stick in order for them to complete their craft.
-Depending on the craft, vocabulary can be addressed too. The picnic basket craft pictured above is an easy way to work on food vocabulary while completing a craft. I love using crafts for vocabulary building because the child can then continue talking about these words with their parent after I am gone.

Tips for using crafts:
-Be prepared!!! I always have all the materials ready to go and pre-cut before our sessions. Toddlers and scissors are generally scary together!
-Always have a model. I want the child to understand what they are doing and what they are creating. Having a completed craft for them to look at is an easy way to help them understand.
-Be alert. After I do a craft with a child a few times, they generally know not to eat the glue. Still, it's important not to put the glue or anything within their reach that you aren't ready for them to have.

There are many ways to functionally work on language development. That is what I hope to stress during some of my Therapy Thursday posts. Now, go get crafting!!

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

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Tuesday, September 6, 2016

My First Lie as a Mother

Years ago, I nervously sat in a doctor’s examination room filling out a form. Without thinking, I read through the questions giving the “correct” answer and not the complete truth. I now understand that what I thought was a little lie was actually a huge untruth.

Moments before I became a liar on paper, I was in the waiting area with other patients. There were some women here for the same reason I was, a 6 week post-delivery checkup. On the floor next to me asleep in the car seat sat my first new baby, Jaycee.

During the long wait, I was forced to look at the other moms with their new babies. They were the moms I thought I would be, holding healthy children and gushing with joy. I watched a mother snuggle her new baby nestled in soft pink blanket before happily handing the baby over to her joyous grandma. Another mom sitting along the wall, gently lifted her crying newborn baby out of the car seat. The cries were soon stopped as a bottle was prepared and given to the hungry baby.

Meanwhile, I sat in an uncomfortable chair calculating the number of ounces Jaycee had drank today and how many we had left to go. I worried that the appointment would go longer than expected, messing up Jaycee’s schedule for feedings and medications. I yawned and fought to stay awake feeling totally exhausted by Jaycee’s intensive round-the-clock feeding schedule meant to increase her weight as quickly as possible before her open heart surgery. The longer I sat, the more jealous of the other mothers I became. I willed the nurse to open the door and call my name so I could soon retreat back to my home with Jaycee.

By the time, I finally heard “Evana” I found myself on the brink of an emotional breakdown. The initial assessment with the nurse was quick and then I was handed that form. The screener for postpartum depression was staring me in the face.

I didn’t need a questionnaire to know I was struggling. I had struggled since the day the doctor told me my daughter had Down syndrome, an AV canal heart defect, and was in congestive heart failure. I was expecting a healthy child. As a 25 year old mother, I had no reason to suspect my baby would be born with any problems.

Newborn Jaycee and I during a feeding at home

And there was that screener in my hand. As I ran through the form circling answers as to not raise too much attention to myself, I suppose part of me didn’t want to admit that I needed help. I felt at this point so early after Jaycee’s diagnoses my feelings were normal and would eventually get better.

The doctor made no mention of my screening when she entered to examine me. I suppose I passed it. Just before she left the room, she said something about Jaycee. With a trembling voice, I then told her about Jaycee’s problems before uncontrollably erupting into an all-out cry. All the hopeful memories I had from being in there for previous visits coupled with seeing all the other moms and babies in the waiting room had resulted in this unexpected tearful display.

The doctor, who was clearly uncomfortable with my outburst, asked if I was all right and if I needed medication. When I declined, she told me to call if I changed my mind and left the room. That was how I allowed post-partum depression to grow and grow into something more serious and untamable.

For about 10 months, I struggled. Initially, I cried EVERY time I was alone. Yes, EVERY time! I didn’t want to leave my house more than I absolutely had to do. I was overwhelmed. I was worried. I was stressed about taking care of a medically complex child.

Finally, I was able to pull myself out of that negative and sad world where I didn’t even recognize myself. It is only through God’s grace that I was able to get to a place where my thinking began to change and I could participate in some social interaction. But 10 months in depression was too long.

This year, we celebrated Jaycee’s 10th birthday. I spent time reflecting on her birth and all the things the both of us had overcome since then. It was then that God whispered something to my heart about that lie in that doctor’s office 10 years ago. I had never considered what I had done a lie. I didn’t even know the questionnaire would be given to me, so I had not planned to be untruthful. Yet, I was. God showed me that by not answering those questions honestly I allowed the depression to take root and grow. There was no one to monitor me but my husband and parents, who were at a complete loss as to how to help me.

The depression was 10 years ago, and I have rarely discussed it with anyone. I suppose I have kept it a secret for the same reasons I did while I filled out that screening form. I was embarrassed that my emotions seemed to be controlling me. I felt guilty that I was so depressed when I should be nothing but happy to be a new mom. I was too proud to admit that I needed help. I was ashamed that I was struggling with depression as a Christian.

And so, 10 years later I confessed the lie that I made on paper that day and asked for God’s forgiveness. I realized how lying about myself and my feelings contributed to some real pain and wrong thinking that would really take me years to overcome.

I can’t go back in time, but I can learn from my mistakes. I can also encourage others too. If you are struggling in this area, get help. You are not weak. Admitting you need help takes courage and honesty. Denying that you have a problem is not helpful to yourself or your family. God will honor your honesty.
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Thursday, September 1, 2016

Therapy Tip-Helping Your Child Understand/Pain Scales

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 of a child with special needs. Today's tip is truly based on my personal and professional experience:

Helping Your Child Understand Pain/ Using Pain Scales

Pain scales are nothing new. They have been used in the medical system for a long time. The series of faces ranging from neutral to crying to help patients describe their level of pain is often used in medical settings.

I liked the idea of using a pain scale with my daughter but I didn't like the common system or it's method. So, I came up with my own.

Background/The Problem:
My daughter has Down syndrome, a history of two different heart issues, obstructive sleep apnea, a lung cyst, and asthma. Her medical problems have far out-weighed her developmental ones. She has been admitted to the hospital over 20 times for illnesses alone. During these hospital admissions, chest x-rays, IVs (sometimes multiple ones at once), and blood draws are all routine. In addition, she has had numerous tests like sleep studies or swallow studies that have added to her medical experience.

All of these have led to one big issue with Jaycee. She has major anxiety related to anything medically related. I have tried to talk to her and let her know what is happening. Yet, she would fight, resist touching, hit, scream, cry, and kick when she felt threatened. When she was smaller, we could hold her down and fight our way through it. As she has gotten older, her anxiety has increased and our ability to just muddle through is not possible. 

I did not blame her for having her physical and emotional reactions. They were completely justified. The problem became clear to me. How can I help my minimally verbal child understand and differentiate between things that hurt and things that don't? A solution was needed because it got to where Jaycee was having a huge reaction to things that do not hurt like a chest x-ray or a dentist only looking in her mouth.

The Solution:
I decided I would make my own version of a pain scale for Jaycee. Since she uses a speech generating communication device, communicating in pictures is her normal, which means these should make sense to her.  

Front Side of the pain scale cards

Here are things I considered with Jaycee's pain scale:
-I did a scale of 0-5 to make it less complicated.
-I made a list of things that caused Jaycee to be upset or have meltdowns.
-I then assigned each problem area a rating.
-I then selected a picture that went with each pain rating.
-I made an individual card for each pain rating with the problems/meltdown areas on the back. This was to help me to stay consistent when I used them with Jaycee. For example, I didn't want to talk to her about getting an x-ray and describe it as a 0 one time and a 1 another time. I wanted this to be consistent.

Back Side of Jaycee's pain scale cards

-I decided that I would no longer lie to Jaycee about things that would hurt. If things hurt, I would tell her. If things did not hurt, then I would tell her. This way she could trust me and develop some understanding.
-The 0 pain was things that had no or minimal physical contact. This included: chest x-rays, wearing oxygen, getting hair cuts, and clipping nails.
-Getting IVs and blood draws were assigned the highest pain of 5. She absolutely hates these two things.
-On the pain scale 4 and 5, I wrote my verbal cues to her: Be calm. Hold mom's hand.

How I use these:
I always prepare Jaycee before a medical appointment or test by telling her what is going to happen. Now, I give the visual pain scale as an addition cue. I allow her to hold the particular card while she is in the waiting room as a reminder of the pain she can expect to have or not have.

The Result:
I have used these for about a year now at the dentist, before blood draws, and before seeing a doctor. It has not been a magic fix. It has not eliminated all her anxiety and related behaviors, but it is decreasing them. It is working.

If you have a child with comprehension or verbal issues, then I would strongly suggest you give this a try. It may take an hour or so to put it all together but it may be worth your time. With all visuals, consistent use is a key component to its success.

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