Preparing your Child with Special Needs for Medical Procedures

In a few weeks, my daughter will be having a series of tests completed at a hospital. The thought of those procedures gives me anxiety and stress. I know how difficult some of these things will be for Jaycee. I dread them, but they are necessary. One way to manage all that negativity is preparation.

Besides packing for the hospital, I will be trying to help Jaycee understand what will be happening. She has a long history with hospitals, which is sometimes a hindrance and other times a help. Jaycee has an Intellectual Disability and is minimally verbal, so visual aides, repetition, and simple explanations are all important.

Over the years, I have figured out how to best prepare her beforehand and how to best support her during the event. Here are some tools I use:

Videos/Pictures
I love YouTube. Every time I have went to YouTube searching for a video for Jaycee, I have found it. Jaycee connects to videos well, so they are the best way for me to explain procedures we don't do often like CT scans.

The key to using videos as a tool is watch them with your child, narrate what is happening in them, and watch them more than once. Videos are good because they help Jaycee anticipate what will happen and help teach her new vocabulary.

Whenever I can, I try to take a picture of Jaycee in a procedure to use later as a reference. For example, I have pictures of Jaycee during her sleep studies because I know she will have to have it again. I then use that picture to remind her of what will occur the next time she has one. I have similar pictures of her during a CT scan. I can't take pictures of every procedure because it isn't proper or I'm focused on her care, but they are helpful to have as a reminder for her.

Picture Sequence Cards

I have made a few picture sequence cards like this one to help Jaycee with familiar situations that cause her angst. Blood work and IVs are horrible experiences for everyone involved. As soon as Jaycee sees a tourniquet, she starts to panic and reacts defensively. Before she starts to get upset, I try to pull out this sequence card in order to show her what will happen. I have other sequence cards for suctioning and diaper changes, which are things she only deals with while hospitalized. I keep these cards in my purse, so I have them when she needs them. 

Pain Cards

I made these cards for Jaycee, because there was a time when she panicked over every procedure. X-rays, for example, are pain free, but Jaycee couldn't be convinced otherwise for a time. She fought everything due to her anxiety of the unknown, and it was exhausting for both of us. I used these pain cards in different situations so that she could begin to understand that not everything in the hospital is painful. After a few years, Jaycee responded better, and I only pull these cards out now in extreme circumstances.

Doll Demonstrations

Occasionally, we have used dolls to help Jaycee understand what is going to happen. We purchased a hospital gown for her American Girl doll, and I created a hospital wristband for her doll. We have changed her doll into these items prior to Jaycee's planned hospital admissions. Jaycee understands the connection. Jaycee is often reluctant to wear a hospital gown because it means she won't be going home immediately. Therefore, we try to convince her to put one on to be like her doll.

Sometimes, hospital staff have used teddy bears to demonstrate wearing oxygen or IV insertions. This technique has not been helpful for Jaycee, especially when they attempt them on her own dolls. Jaycee has gotten upset during these demonstrations. I do believe part of her reactions are because she understands what they are telling her and isn't happy about it.


These are the ways I have helped Jaycee prepare for hospital procedures. With medical testing coming up, I will be going over some of these things again. Let's pray they work, and things go smoothly!

If My Daughter Could Really Talk

My daughter's communication skills have grown exponentially over the past 4 years. For 8-9 years, she was nonverbal. We first communicated with sign language and other nonverbal methods. Later, she used her communication device to expand her vocabulary and "talk" about more subjects. Then, much later than expected, she started trying to talk more and more.

Now at 12 years old, Jaycee's verbal speech continues to increase. There are some words she can say very clearly like mom, dad, bye-bye, hi, yes, and papa. I love these words. They are precious.

Some words are missing consonant sounds or have the wrong consonant. Some great examples of these words are:  Pi-a (pizza), hickles (pickles), ip-ops (flip-flops), goo- -ob- bubba (good job bubba), eh-he (spaghetti). As her mom and a pediatric speech-language pathologist, I have come to understand her speech patterns and know what she is saying most of the time. I'm happy she's attempting to talk after years of silence.

Because of Jaycee's speech and language delays, we do a total communication approach. She can sign, use her communication device, speak, or gesture to communicate. Still, it's not like I can converse with her about anything and everything. There are some things she literally cannot say.

Similarly, there are some topics that I don't know if she understands. She has an Intellectual Disability, which affects how learns, remembers, and comprehends. This, too, impacts our ability to communicate. I try to simplify my speech for her, but it's hard to really know what she knows at times. With my son, he can ask questions to clarify or offer his own thoughts. This doesn't happen with Jaycee.

If, for a moment, my daughter could really talk like any other 12 year old, this is what I would ask her:

-I've told you that you are going to a new school in the fall. Do you have any questions or thoughts about that?

-What do you really enjoy doing besides watching movies and listening to music? What hobbies would you be interested in trying?

-Do you hate doing your medicine everyday?

-How does it feel to wear your bi-pap at night?

-What happens during a school day that you like? That you don't like?

-Sometimes you get really scared when we go to the hospital for a regular appointment. What are you thinking about? What scares you about it? How can I help you in the future?

-Sometimes you sit down and refuse to move when you walk for awhile. What's really going on when you do that? Does something hurt? Are you just tired? How can I help you?

-What do you really enjoy doing with me?

These are some questions that I would really love to have answered. I want to know more about what my daughter understands, thinks, fears, and feels. Maybe one day she'll have the ability to do it. Until then, I am grateful for the things she can express, and I'll keep interpreting her behavior as best I can.

After all, there was a time when I thought I'd never hear the word "mom." Now, she says it in several different tones all with their own meaning. Perhaps, one day these answers will come too. A mom can hope...

The Biggest Myth When Your Child is Non-Verbal

Myth: Individuals who do not speak have no words because no one made them talk or they don't want to talk. Individuals who can't talk don't have anything to communicate.

Fact: There is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. Also, a lack of speech also does not indicate a lack of desire to communicate.


Even though the vast majority of people with Down syndrome are able to verbally communicate, my daughter struggles in this area.

Jaycee was considered non-verbal for many years. I now consider her minimally verbal at age 10. She says about 20 or words clearly now and attempts many more words. Most of her communication is with sign language and her communication device. She has difficulty with verbal speech due to childhood apraxia of speech, which can be associated with Down syndrome (see my post from Oct. 2, 2016 for more information).

Other individuals who are non-verbal may have difficulty due to a brain injury, stroke, profound intellectual disability, or muscle weakness in the face to name a few. In short, understand that if someone doesn't speak (other than the rare selective mutism) there is a medical or developmental reason for it. This is true for those with Down syndrome and those without.

Outsiders don't understand why my daughter doesn't speak. I have heard comments like:
-She could talk if she really wanted to.
-I guess everyone talks for her, so she doesn't have to speak.
-No one is making her talk, otherwise she would be talking.
-She has nothing to talk about or she would talk.
-If she can sign so well, she should be able to talk.

These comments have lessened as Jaycee has gotten older. When she was younger, it seemed like my husband and I were seen as partially to blame for her lack of speech.

Lack of verbal speech is not a result of no one trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. "ee" for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. Jaycee got to the point where she shut down when asked to say a word; she recognized speaking was very hard for her. She doesn't speak because her mouth and brain can't work together to form the sounds like I can. It's her body's fault and no one else's.

Even though Jaycee doesn't have much verbal speech, she has much to communicate about. She has hundreds of signs, which she uses to request, name, and ask questions. Sometimes, this misleads people. Just because someone can sign, doesn't mean that they can speak. Signing involves being able to make a hand position/motion and recalling what that position/motion means. Communicating with your hands and your mouth are two different things.

Jaycee also uses her communication device to talk about things a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this.

Just because someone doesn't have the ability to speak, it doesn't mean that they have no communication.

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Mothering & Communication Fails

I have noticed that I am messing up in some areas lately. Communication with Jaycee is different. Due to her Down syndrome and severe childhood apraxia of speech, Jaycee's spoken vocabulary is limited. She uses gestures, sign language, verbal speech, and a speech generating communication device for a total communication approach.

I am a speech-language pathologist who knows about best communication practices but I am also a mother. Like any mother, I have instincts with my child. I can anticipate her moves. I know what her mannerisms mean and what her preferences are. This is very helpful in many situations and circumstances. However, this also causes me to step in when I should be allowing Jaycee opportunities to be independent and communicate for herself.

As my 6 year old son grows up, I learn about new aspects of communication from him. He's constantly trying to negotiate with me, asserting his independence, and letting his preferences be known. He begs for sodas when I say no. He asks for 5 more minutes when I say it's bedtime. He sees something on television, and he asks me for it. My communication with him makes me see the areas I am failing in with Jaycee.

• Restaurants: Most of the time, I ask Jaycee what food she wants since she has all the food items on her communication device. However, I usually don't have her tell the waitress what she wants. I tend to order for her, which is a communication fail. In the past, Jaycee has ordered the wrong thing (an item not on the menu) or will get sidetracked on her talker and go off topic. But, I need to let her learn and make mistakes. Other times in the past, the waitress will look at Jaycee as she communicates on her device as if Jaycee is speaking a foreign language. Sometimes my tendency to speak for her in restaurants is to prevent these awkward social situations.

Jaycee's restaurant food page on her communication device

• Clothing: On the weekends, Jaycee chooses her clothing for the day. During the week, I tend to pick out her clothes. This may seem insignificant, but I haven't been choosing my son's clothing for some time now. Jaycee in general doesn't protest about what I suggest she wear. (Except for that one time.) But, I do need to do better at involving her in the process and giving her a chance to express her preferences.

• Waiting: My son often tells me to wait. He asks for more time for playing. He tells me he'll do something in a minute. He can respond to my commands in ways that Jaycee can't. If I tell her to do something, I expect it to be done almost immediately. If she protests by throwing herself on the ground, I don't try to negotiate. This is a big communication fail! I need to give her the same types of options that I do her brother. Maybe she just needs one more minute with her priceless I-Pad and things will go smoother.

So with these things in mind, I will try to do better with my daughter. I will try to help her to be more independent and to allow her to use her methods to communicate in these areas. I will try to remember to examine my routines with her periodically and remember that she is maturing.

Perhaps, I will have a restaurant success story to share here one day!

An I-phone & A Minimally Verbal Child

How good is the camera?
How much memory does it have?
Is there a warranty?

These are all questions I didn't ask a few months ago when I got a new phone.
I knew what I wanted. No, what I needed. I needed an I-phone.

The only thing I was interested in was the FaceTime feature on an Apple phone.

Sure, I had tried Skype with some success with my old phone. But, many of my family members had I-phones or I-pads now which meant that FaceTime would be a good option for us.

Here's the thing: Jaycee is a very social person. She will sometimes bring me the phone and sign to call grandma or her cousin. I sometimes felt bad as I told the person answering the phone that Jaycee wanted to talk to them. I knew they would have to carry the conversation since Jaycee's verbal speech is extremely limited. She will babble at times and often sign or gesture responses to the person on the other end of phone who of course couldn't see what she was communicating. I would interject things like: Jaycee's smiling. She just signed play. She shook her head no. This method didn't work well for anyone!

A shot of Jaycee on FaceTime with her cousins

Enter the I-phone (and later an I-Pad) and the FaceTime feature. With a simple push of a button, we could connect with someone she wanted to talk to on the phone.

This is exactly what Jaycee, a child who is minimally verbal, needed. The conversations are no longer 1 sided. Jaycee can sign or gesture or make a facial expression that the other person can see. This has been a great way for her to communicate with those she loves. I don't have to be her interpreter any longer, since most of the time the people talking to her know what her mannerisms mean.

Since having these devices a few months, Jaycee has learned how to open FaceTime and can click on the name she wants to call. Sometimes, she does this without me knowing! But, she is gaining some independence this way as she doesn't have to rely on me to initiate a call.

Although I am sure the good people at Apple made this form of video chatting for a variety of reasons, I wonder if children who were like my daughter were initially one of them. Either way, I'm grateful for this feature!

Jaycee showing her cousin her new dolls on FaceTime

My Life: SLP & Mom of a Child with Developmental Delay

Life can be quite ironic at times. My job and home life is surely proof of that very thing.

When I graduated with my Master's degree in 2004, I was excited for my first job working as a speech-language pathologist for a local school district. In college, I had taken all the required courses, completed my internships, and had a significant amount of my clinical work with children with autism. Fresh out of college, I knew that I had a lot to learn but was ready to take on the challenges that were ahead of me.

I loved my job in the school. There were a variety of cases I saw in the pre-school and elementary classrooms. I especially loved the pre-school children as I could be silly and playful with them. Some of the children I had were difficult cases. I did the best I could at the time with the knowledge I had. But, I often wondered what life was like for these parents of the children with more significant delays.

During my second year of my job, my husband and I were thrilled to be preparing for the birth of our first child. My co-workers threw me a baby shower three weeks before I was due. Little did I know, it would be the last time I saw them for some time.

That night, I went to bed thinking I had overdone it at the baby shower. But a few hours later, I realized that I was in labor when my water broke. Jaycee arrived shortly after getting to the hospital, and it was a thrill to see our sweet baby.

Then things took a different direction. She wasn't breathing well and needed medical care at a bigger hospital. Later, we found out Jaycee had Down syndrome, an AV canal heart defect, and was in congestive heart failure.

My baby was medically fragile, and I could no longer work full time. I did not return to the job at the school telling myself if things ever settled down, I may find myself there again. For six months, I did not work at all. I cared for Jaycee at home becoming her "nurse" giving her medications, counting every ounce she drank, starting her early intervention therapies, and managing her 3 month stint of home oxygen.

When I rejoined the work force, I decided the best fit would be private practice with my primary focus being in the early intervention program. My goal was to keep my caseload small so I could work a couple of days a week giving myself time to be at home with Jaycee. I enjoyed the work and has a fresh perspective as a mom of a child with special needs.

The lines between my home and professional life blurred for several years. Jaycee had a number of feeding difficulties including a weak suck, texture aversions, and poor chewing that I took upon myself to treat. I taught Jaycee sign after sign trying to build a vocabulary while we waited for verbal speech to come. She had several professionals addressing her delays but I felt it was my duty and my obligation to help Jaycee at home too.

Before I knew it, Jaycee was ready to start pre-school. Three years prior, I was leading IEP meetings at this same pre-school. Now, I was the mother in the IEP meeting with a sick feeling in her stomach. Now, I knew exactly how those parents felt.

Honestly, my professional life was emotionally difficult the first 5 years of Jaycee's life. I knew developmental milestones well, and it was obvious that Jaycee was behind. When I would score a language test of a child with significant delays, I would instinctively know that my child was almost always "worse." It was hard not to compare and stay detached when the struggling children I was working with were making progress with verbal speech as Jaycee remained mostly silent. Sometimes, I envied those parents who wanted their child to say a specific phrase while I would just be happy with a word, any word! Yet, the biggest part of me understood their worry, stress, and problems created in daily routines because they had a child who couldn't communicate well.

It seemed like once Jaycee started elementary school, something changed in my brain. I was able to just measure Jaycee against Jaycee. I didn't compare children I was working with to my own situation. I somehow learned to separate the two worlds better. Perhaps, this was made possible since I gave up working with Jaycee at home about that time and just let her own team help her. I got rid of our stack of worksheets, oral-motor tools, flashcards, and list of skills we were trying to develop. I think we both felt relieved when I relinquished the role as Jaycee's extra therapist and became her mom (and continued as her untrained nurse). In a way, I felt quitting was doing Jaycee a disservice. But, it was actually allowed me to develop a different relationship with Jaycee.

Later this year, I will mark my 10th year in private practice and in the early intervention program. I still haven't made it back to work full time due to Jaycee's frequent hospital admissions, daily health needs, and multiple specialists she sees. I suppose I'm still waiting for things to settle down a decade later. The school job that I thought I might return to one day feels more like a wish now that an actual possibility.

Being Jaycee's mom and a speech-language pathologist has been good at times. I honestly would have been lost without my training and my access to materials. My background in sign language was helpful. My interest in oral-motor and sensory feeding issues all came in handy with Jaycee for sure. However, it's been hard for me at time to separate the two roles. It was hard for me to shut off that therapy driven, goal focused mind and just be a mom.

Jaycee has definitely made me better at my job. I can more easily relate to children with limited understanding and expressive language. I can also relate to parents much better as I have walked in their shoes. I understand first hand how a child's lack of verbal communication can cause the child and the communication partner to feel frustrated. I know what it's like to wait and wait for your child to speak. I know how frustrating it can be when it feels like your child isn't making any progress.

I also know the satisfaction that comes as a therapist when the child you are treating makes advances. And I know how wonderful it is when you are the proud mom of that child! The neat thing is-some days I get to have both!

"I'm a speech therapist. What's your Super Power?"

Public Interactions with my Minimally Verbal Child

Jaycee says less than 20 words due to severe childhood apraxia of speech (CAS) and her low muscle tone associated with Down syndrome. She has a small amount of consonant sounds she can produce and can usually only put very simple word forms together. For example: mama, dada, oh for no, hot, bubba, papa, "ss" for please, etc. She's trying more words than ever before but it is extremely hard for her to produce all consonant sounds and to sequence those sounds into words.

Interacting with the public when you can barely speak is tricky. These are common experiences I have with Jaycee while we are in public.

1. When a stranger asks Jaycee a question and she doesn't respond (because she can't), they ask me if she's shy. Sometimes I say yes and walk away. Other times I explain why she can't answer.

2. When Jaycee doesn't respond to a question asked by someone unfamiliar with her, they will make a comment like, "Aren't you going to talk to me?"  No, she can't talk to anyone. She only says a few words!

3. When people ask her what her name is, I usually have to answer for her. She does have a communication device but doesn't usually tell people her name with it.

4. When people see her signing, they ask me if she's deaf. No. Why can't she speak if she can hear? My answer will vary in length depending on who is asking and how interested they really seem to be on this subject.

5. When Jaycee does say a familiar word, people act as if they have witnessed a miracle and make a big deal out of a word I have heard her say a thousand times.

6. Children who approach her on a playground may say things like, "She can't even talk!" Some will ask me, "Can she talk?" She can say a few words but her mouth just doesn't work like yours. She uses sign language and can communicate other ways though. Then I usually teach them a sign or interpret Jaycee's gestures for them.

7. At restaurants, I generally have to order for Jaycee. We do try to have her use her communication device when the food is on her device and if she will cooperate. Sometimes, she'll order pizza at a fast food hamburger joint, so that's when I have to jump in.


This is just a few encounters for you to get an idea of what it's like for Jaycee and I when we go out and about. If you are a teacher or a professional, then I hope this helps you understand what some of your families deal with regularly.

Jaycee signing "deer," her name for her cousin Gabby. Signing is one of the many ways she communicates daily.

When a Talker Stops Talking

Boom!!

Jaycee was trying to take her coat off at church while holding her Bible and her communication device ("the talker") when her device crashed to the hard floor.

I didn't think anything about it. The talker has had many, many falls. On concrete, carpet, the ground, down a few steps, the talker has had many accidents, yet it has always been fine.

This is her talker's home screen when it's functioning properly. It works similar to an IPAD. You push an icon which opens up a related screen. The talker speaks whatever she pushes.

We have had Jaycee's Vantage Lite from PRC for a few years. It has only been "broken" one time when the battery stopped holding a charge. So, it had to be sent off to be repaired that one time. Overall, we have found the Vantage Lite to be very durable. It is considered to be medical equipment, so the talker is $,$$$!! Yes, you would certainly be surprised at how much these things costs.

At home, Jaycee uses total communication. She says a few words, she signs hundreds of words, and she uses the talker to supplement what she can't say using the other methods. 

Anyway, I looked at Jaycee's talker after church and noticed it was on the loading screen instead of the home screen. I knew there was a problem. I did some troubleshooting on the device with no change. The talker would not talk and it was time for lunch.

 My first thought was, "Shoot! We are having a lot of things today she can't sign."

The first problem we encountered, Jaycee couldn't pray. She pushes her prayer button before receiving her food. No talker=no prayer. During the meal, I usually push a button on her talker in an attempt to get her to converse with us about something. That opportunity was missed today. We had to stick with yes and no questions.

Then it came time for seconds on food, she was pointing and gesturing intently but I was lost. Really, I think she was saying she wanted more of everything, but that wasn't going to happen. She was pointing to her plate and making motions. I picked a great day to have tacos and salsa, both of which we use the talker to say. We finally got it figured out, but it wasn't an easy process.

After lunch, we took off the battery cover to reveal that something had come loose from the fall. Fortunately, the talker was fixed and Jaycee was back to communicating!

You don't really know how much you depend on something until it stops working. Just another thing we deal with on our special purposed journey.

 

A Label Change

For years, I have labeled Jaycee as "nonverbal" because she primarily does not use words to communicate. She has signed or used her communication device instead. Nonverbal seemed to best describe her. Her words, which were only a few, were rare occurrences.

But this year, Jaycee has started saying more words. She still doesn't have a large vocabulary by any means but she does say words daily now.

Her current word inventory consists of: mama, dada, bubba, bye-bye, love you, maw-maw (Grandma), papa, high, Paul, hot, up, boom, pie.

She also tries to sing along to songs making her own sounds and can even make some animal noises. This year has been her biggest vocabulary growth. Still, for an almost 9 year old, I would say her expressive language would be equivalent to that of a 15 month old. Her verbal speech is still extremely delayed. Signing and her communication device are still her primary modes of communication.

When I refer to her as "nonverbal" now, it feels inaccurate. People generally think of nonverbal as having absolutely no speech, so they act surprised when Jaycee says anything. Then they give me a puzzled look as to why I call her nonverbal. Maybe it is misleading at this point in her life...

After reading some other professional opinions on how to best describe her, I believe it's time for an official label change. From now on, I will refer to her as "minimally verbal." I think she bets fits this category. She uses speech daily now, although it is still very, very limited.

Maybe just maybe....one day she can upgrade from minimally verbal too!

31 for 21: News Flash

31 for 21 & Photo Friday and the story behind it.

This is a picture of me and my friend, Julie, at a local news station a few weeks ago. We were on the local morning program to discuss different aspects of Down syndrome for Down syndrome Awareness Month. Julie went on as the support group leader talking about the group. I discussed parenting Jaycee and her communication device.

My first thought when they told me that I would be doing a live interview was: "What have I gotten myself in to?"

I had a week to prepare, wonder, stress, and overanalyze what was going to happen in that 3 minutes of live television. I had to go buy new clothes. I had to examine my very frizzy hair and figure out what I was going to do with that. I totally overthought the whole thing.

But, I did prepare for it. I had a message I wanted to send. First, Jaycee is like a lot of other children. Secondly, don't be afraid to have a baby with Down syndrome.

I didn't have the questions ahead of time, so I had practiced with my husband asking me questions and then telling me if I answered them good or bad.

So, I felt ready for the interview when it happened at 5:35 in the morning. It went great. I got the message out that I wanted to send. Even better, I got to introduce many people to AAC as I showed Jaycee's communication device.

Advocating for our children is important. Even if you have to do something that makes you uncomfortable, it's important to get good, positive stories out there about Down syndrome.

But, I'm in no hurry to ever do live television again!!

31 for 21: Busting Non-verbal Myths

Blogging 31 days for Trisomy 21 continues with myth busters Monday:

Myth: Individuals with no verbal speech have none because no one made them talk or they don't want to talk. Individuals who can't talk don't have anything to communicate anyway.

Fact: There is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. Also, a lack of speech also does not indicate a lack of desire to communicate.


My daughter is essentially non-verbal. She says about 15 words now, so she does have a few basic words. She has difficulty with verbal speech due to childhood apraxia of speech.  Others who are non-verbal may have difficulty due to a brain injury, stroke,  profound intellectual disability, or muscle weakness in the face to name a few. In short, understand that if someone doesn't speak (other than the rare selective mutism) there is a medical or developmental reason for it. This is true for those with Down syndrome and those without.

Outsiders don't understand why my daughter doesn't speak. I have heard comments like:
-She could talk if she really wanted to.
-I guess everyone talks for her, so she doesn't have to speak.
-No one is making her talk, otherwise she would be talking.
-She has nothing to talk about or she would talk.
-If she can sign so well, she should be able to talk.

These comments are no longer hurtful to me but they frustrate me. Jaycee's lack of verbal speech is not a result of not trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. "ee" for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. While I don't ask her to say too much anymore; it is not the main reason she doesn't speak. She doesn't speak because her mouth and brain can't work together to form the sounds like I can. It's her body's fault and no one else's.

Even though Jaycee doesn't have much verbal speech, she has much to communicate about. She has hundreds of signs. Just because someone can sign, doesn't mean that they can speak. Signing involves being able to make a hand position/motion and recalling what that position/motion means. If someone has apraxia, it doesn't mean they can't learn sign. They are two different skills.

Jaycee also uses her communication device to talk about things a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this. Just because someone doesn't have the ability to speak, it doesn't mean that they have no communication.

The Silence in My House

Whenever I am around my brother's family, I feel a little overwhelmed. He has seven children, yes 7 children. (No, they aren't weird but I guess they like kids.) The noise and activity level of 7 children is quite different than what I am use to experiencing. I am starting to be known for saying, "You kids be quiet," whenever we get together because my ears and eyes aren't use to all the sounds and sights they give off.

My house is much different. My 4 year old son is inquisitive and talkative at times. He's starting to get to where I can hold a short conversation with him and get some decent responses back to questions.

Then there's Jaycee. Jaycee primarily signs, gestures, or uses her communication device to communicate with me. She says "mama" when she's mad or if I tickle her. Sometimes, she'll sign mom instead of saying it. Bye-bye, papa, bubba, uh, yeah, and high are words she can say well. Dada makes an appearance once in awhile, usually with prompting. 90% or more of her communication isn't verbal speech. It's other stuff. I can't have conversations with her very often. Whenever I ask her a question that isn't related to food or television, I am usually ignored. Sometimes, she will surprise me with an appropriate response. But, I can't talk to her like I can my son. I can't ask her how school went. I have to ask questions in the context of knowing what signs or words she knows on her device.

Car rides with Jaycee....silent. I can't have her sign in the vehicle. She can't speak. There's only dancing and music in the car but not many words. When Jaycee & I are alone in the house, which happens when she's home sick, the house is mostly silent. She will tell me what she wants to watch on television or she'll mention a friend at school she misses. But, she doesn't initiate a conversation with me. There is no long back and forth exchange. We cuddle, watch movies together, and take walks to spend time together instead. But there isn't much talking. There are times when I have been in the house with Jaycee all day that I just want my husband to get home so I can talk to someone who responds. And boy if he doesn't listen to what I'm saying, he gets it!

Silence breads more silence. I expected that as she got older, she would try to vocalize more or start to say more words. Occasionally, something new pops out, but there's been no spurt in expressive vocabulary. I have noticed that the longer she stays silent, the less I ask her to say words. I have become discouraged by the silence of our days.

As a speech language pathologist, I often make recommendations to families of toddlers with delays in language. If I were giving myself advice and being brutally honest, here is what I would tell myself in order to break the silence:
1. Create an atmosphere that encourages any kind of vocalization.
Over the years, Jaycee has gotten frustrated with the fact that she can't speak due to apraxia of speech. I have gotten frustrated too! She quit trying to talk, and I, for the most part, quit asking. But she won't try if I don't expect some sort of vocalization. I need to start trying again. Try any word, any sound, any simple thing until she repeats something.
2. Find new ways to practice words she's already saying in order to build her confidence.
We are well settled into a routine of what questions I ask or what choices I give her. We do this out of routine, which is good. But breaking the routine and adding in some new ways to practice words would help her.
3. Keep asking her questions.
I get discouraged when that she doesn't respond to me. It makes me want to give up. If 9 times out of 10 someone ignored you or talked about Barney instead, you'd probably give up too. But, when she does answer a question, it's magical! I should let that 1 time inspire me instead of letting those 9 times defeat me.

Let's see if I can follow my own advice without getting frustrated and discouraged....

"Talking" with Jaycee

When I talk to my daughter, our conversations are a little different. She's 7 years old but only speaks about 12 words or so. She signs, gestures, and makes noises to communicate a variety of things. For the past couple of years, Jaycee has also used a speech generating communication device. Her device is the Vantage Lite made by PRC. Here's are two short videos of conversations with Jaycee: