Tuesday, July 17, 2018

Call I Be All Right When Things Are All Wrong?

Did you ever have one of those days? Or several days?

As summer break goes along, Jaycee has become a real home body. She likes the routine of home life. When we leave to go anywhere out of our daily norm, she is reluctant to get in or out of the vehicle. Fun stuff- let me tell you! Grocery shopping, haircuts, a cousin's baseball game, Bible school, etc. are all things recently that Jaycee has protested. She repeatedly signs "home" while driving to or from these tasks. I'm not sure what it going on with her, but it's been stressful for both of us. It's been building over the past few weeks for whatever the reason.

Last week, this became a major issue for us. Almost every outing, I had to plead my daughter to get in the vehicle to leave home. By Friday when she had routine appointments at the hospital and refused to go inside the building, I was ready to have a meltdown of my own. We made it through thankfully with the help from grandma's bribery. After seeing two specialists, our weekend was just beginning.

The next day, my husband was leaving his job site in another state pulling our camper home. I followed behind him in my van. We had a 6 hour drive ahead of us plus a few stops here and there. A couple of hours into the trip, a radiator hose blew on his truck. That ensued a call-a-thon to different parts stores desperately looking for a part that we later found out was only available through a dealership. I frantically drove to one store under the belief they had the right part. They didn't. But, they located it for us at a dealership 1.5 hours away (the direction we had just traveled from). The part was eventually in our possession and in no time was on the truck. But, hours were wasted, and we needed to find a hotel for the night to get Jaycee's medications done in time. Jaycee reminded me periodically that she wanted to go home. We all did! During the chaos of the breakdown, Jaycee was very confused and cried a few times, which made me feel helpless and more stressed.

By the time we settled in to the hotel in the pouring rain, I wanted to throw the blankets over my head and cry. That's what I did. The truck's breakdown, the disruption of my plans (I don't do well with spontaneous events), the rain, the little girl asking to go home every 30 minutes, the little girl refusing to get in and out of vehicles all week...I was tired. That's all I can say.

In retrospect, I am glad I was traveling behind my husband so that I could retrieve parts for him. Otherwise, he would have been in a gas station parking lot alone with no way to fix his truck. For that, we can be thankful. At the time, I was frustrated, upset, and stressed.

On the way home (we eventually got home with no problems the next day), I was pondering my reactions to the events from the weekend. I handled things really poorly. Well, I could have handled them worse. I didn't get angry. I just got very stressed. And that's when I had the thought:
Call I be all right if things go all wrong? 

Sometimes, I am awesome in adversity. I can remain calm and make decisions. I have displayed this during several of Jaycee's health emergencies as I pack for the hospital, put her oxygen on, and call a relative to watch my son. Other times, my mind gets wishy-washy, fearful, and busy. My mind gives me a million thoughts at once and most of them aren't helpful. I worry and stress about things I can't control. I have had this reaction in health emergencies too as I have paced around the house forgetting what I'm doing and taking twice as long to make decisions.

The crazy weekend was an example of me not being all right when things are going wrong. I had trouble sleeping. I worried. I talked negatively. I didn't have patience for Jaycee's refusals to get in the vehicle. I didn't have peace.

Hasn't God called me to something bigger? Can't I pull myself together?

I remember how I was 10 or 12 years ago. I would have never responded with crying and immense stress to a situation like this back then. After all, my faith helps me keep an eternal perspective on situations and reminds me that panic and worry will add nothing to my life. I'm still praying, reading my Bible, attending church, and listening to worship music like I was back then, but something's clearly off.

I think I have discovered the problem though. I haven't given myself what I need to make it through the days. The amount of time I spent with God was fine 10 years ago. But things are different now. I am a person who has seen their child go through multiple health emergencies, surgeries, and respiratory distress. I have adapted to our life with machines and medicines and behavioral issues related to my daughter's limited understanding and verbal skills. But, I start out each day with more issues than the average mother. It's a fact-not a plea for sympathy.

My life is more stressful than most. I can't pray, attend church, or read my Bible an average amount. I need more. I need more time with God filling me up, especially when I feel stress start. Instead, I want to believe that I am fine. I tell myself I'm handling things well enough. I try to manage, and sometimes I can messily make it through a spike of stress in our lives. Other times, I want to give up, which is certainly a sign I'm not fine at all.

This week, I'm reviewing my faith status, looking at ways I can live more peacefully, and striving to get to a place where I can be all right when things are all wrong. My husband is busy too looking for spare radiator hoses for future long drives. What about you? What's helping or hurting you?
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Tuesday, July 10, 2018

Independence Report

Independence in life is THE goal. Every parent eventually wants their child to be independent. In America, that usually means that the kids grow up, get a job or attend college, be self-sufficient, and move out of their parent's home.
Parents of children with disabilities are no different. We want our children to do the best that they can whatever that may be. We want them to be as self-sufficient as possible, but it's not always easy to achieve. Outsiders may believe that we, the parents, are partially to blame for a lack of independence. Some feel the parents may do too much for their child, don't push them enough, or are too overbearing. No parent is perfect, but there are true barriers to helping those with disabilities do everyday tasks.

For myself with Jaycee, there are many factors that become obstacles to her independence. Jaycee's minimal verbal skills is probably the biggest hurdle for us. She doesn't have the verbal skills for a 2 way conversation. She can't ask questions when she doesn't understand. That makes it difficult. If she doesn't respond to my directions, I'm not sure if she doesn't understand, if she doesn't want to, or just what the problem is because she can't tell me. Add an intellectual disability to that and you'll find that teaching a simple skill isn't so simple.

Besides that, Jaycee has low muscle tone common with Down syndrome. This makes some basic motor tasks hard for her to do, because her muscles aren't as strong. For instance, carrying objects up steps is hard for her (think about carrying a small grocery bag up a couple of steps). Her muscle tone gets worse after hospital stays for various amounts of time. After two hospital admissions in January, Jaycee couldn't walk up our stairs because she was so weak. She crawled up them using her hands and knees for a few weeks until her strength improved. Her frequent illnesses disrupt many things in her life, but they definitely affect her muscle tone, endurance, and strength. This impacts her ability to make progress in her independence because she's fighting to get back what she had to begin with.

Another barrier has been Jaycee's fine motor skills. Many simple tasks require small muscle movements in the hands and fingers. Fine motor has always been challenging for Jaycee. Opening a water bottle, taking the cap off of toothpaste, opening a shampoo bottle, and tying your shoes are all examples of common daily tasks that require fine motor abilities. Good fine motor skills are vital to being independent.

Even though there's some challenges, Jaycee can do many things. When Jaycee was younger, I wanted to know what to expect in the future. I searched and read to try to find answers that only time could reveal. I'm less concerned about what our future holds now, because it's really not a worry for me anymore. Still, I'd like to offer information for the parent out there searching and wondering what life will be like. 

Every child with Down syndrome is different. Every child has strengths, weaknesses, and are motivated to do different things. No two people with Down syndrome will have the same abilities or challenges. But, here are things my 12 year old can do:

-Write her name. It's not perfect, but she tries.
-Take selfies.
-Call people on FaceTime. (Usually when she's not suppose too. Ha!)
-Brush her own teeth doing every step by herself. I do an extra minute of brushing just to be sure.
-Once I turn the water on, Jaycee can do almost everything in the shower herself. Shampooing her hair is still a bit of a challenge.
-Dish out her own food on her plate. She likes to give herself generous portions.
-Put her plate in the dishwasher after meals.
-Set the table for meals.
-She's just started opening up her own water bottles for drinks.
-Put dirty clothes in the hamper.
-Put her clothes away in the dresser or on hangers in her closet.
-Put her shoes on by herself, but they may be on the wrong feet. She can't yet tie shoes.
-She likes to pick out her own clothes. She doesn't always understand to choose them based on the weather, but she does pretty good for the most part.
-Gather what she needs for school in the morning.
-Feed the fish on her own. Feed the cat with a little help opening the can.
-Swiffer mop the floor.
-She loves to unload groceries from a shopping cart into the van. She helps carry grocery sacks inside the house too. A couple of times, she started bagging groceries at the store and did pretty good. Sometimes, she surprises me.

Is Jaycee behind? Yes, of course. But, she has accomplished many skills considering that she is minimally verbal, has a significant Intellectual Disability, and has major gross and fine motor deficits. Yet, there are many things she can do. Not only that, she keeps learning and doing more. Next year, I'm sure the list will be longer. I'm proud of what she's accomplished. As far as the things that are still a struggle- we'll get there. If not, we'll manage. We always have.

I only share this information for parents who are curious. What she does is important to many teachers, professionals, and the world. Who she is and becomes is by far more important!
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Tuesday, July 3, 2018

Sleep Apnea Surgery: 1 Year Later

Last year, my daughter had a multi-level surgery to help treat her obstructive sleep apnea (OSA). This wasn't a surgery we ever thought we'd consider, but it was one that came after 8 years of struggling.

When my daughter was 3 years old, a sleep study indicated Jaycee had OSA. It is a diagnosis that is quite common for individuals with Down syndrome. The first line of treatment was to remove her huge tonsils and enlarged adenoids. I thought that the OSA would be "fixed" after the surgery. To my surprise, the follow-up sleep study showed the OSA was still present. The c-pap entered our home shortly after the study. Getting Jaycee to tolerate the c-pap machine was a long, arduous task that frankly took years.

Since her diagnosis, Jaycee has had sleep studies completed every 1-2 years. Nearly every study showed worsening apnea, which meant her c-pap support was increased more and more. Eventually, Jaycee switched to a bi-pap to make the higher pressures more comfortable for her. It worked for awhile, but the pressures kept getting higher making the bi-pap uncomfortable. If you are familiar with pressure settings, then you'll know that 19/15 with a rate of 15 is pretty high (and hard to tolerate). When she was no longer wanting to wear her bi-pap on this high rate, we started considering alternatives that we had been offered before but never considered.

I'm trying to sum up 8 years of Jaycee's OSA and machine treatments in two paragraphs. There's so much to say. If you want to read more on her background, I've written previously about her journey towards the surgery on this post.

After seeking several opinions and going through several diagnostic tests, my husband and I consented to a multi-level surgery performed by an ENT last year. A sleep endoscopy test showed exactly where Jaycee was obstructing while she was sleeping. This test allowed her team of doctors to develop a surgical plan for treatment. This website gives some information on the surgery in general. Basically, Jaycee had a total of 5 spots in her nose, throat, and mouth that would be operated on in order to create more room in her airway.

Prior to the surgery, we were told what to expect with her recovery and the risks. After surgery, they thought Jaycee would need a night or two in the hospital to be monitored. After that, Jaycee would need around 10 more days of recovery time at home. Her diet would need to be softened (much like after a tonsillectomy) during her recovery. Also like a tonsillectomy, the main risk was the small chance of a bleed post-surgery.

The benefits of the surgery would hopefully be that Jaycee's pressures could be decreased significantly. The surgeon reported that this surgery eliminated the need for a c-pap or bi-pap machine for some patients but didn't expect that result for Jaycee given her severity.

Roughly one year ago, Jaycee went in for surgery. At the time of the surgery, Jaycee was 11 years old and minimally verbal. My husband and I were nervous, but hopeful she would do well. But, the recovery was worse than I could have imagined. My body tenses up again just thinking about it. She was in a tremendous amount of pain. Jaycee has a high tolerance for pain, so I knew she must have felt horrible. But really, the doctor didn't prepared me for the pain. I suppose I should have known, but it was hard to watch her feel so bad.

Jaycee spent the first night after surgery in the ICU as planned. Then she spent the next couple of nights on the hospital recovery floor. The main issue after surgery was her pain that kept her from being able to/wanting to swallow. At first, she couldn't manage swallowing her own saliva. It took her some time to swallow enough liquids to go home safely. We eventually got there! I could write several paragraphs on how the nurses didn't seem to know how to handle Jaycee and her recovery but I'll stop myself. (Sigh)

Once we were home, Jaycee wasn't doing great. She was barely taking enough liquids and soft foods. Normally, Jaycee wants to eat and drink all day long. She had to almost be forced to eat yogurt or drink a Kool-Aid jammer. Jaycee sat around and looked pretty miserable most of the time.

Then another problem happened. Shortly after being home, Jaycee developed thrush, which was most likely a side effect of one of her post surgical medications and her decreased oral intake. Thrush made eating and drinking even more painful for her. We begged her to drink and take her medicines. It was extremely stressful! I had a plan in my head of how her recovery would go based upon her doctor's warnings, and the reality was much different.

Then, Jaycee had a post surgical bleed. And then another. That's right- two. She had to be admitted each time for the bleeds. I could write 500 words describing the bleeds, but I'll spare you. In total, it took 25 days for Jaycee to make a full recovery. Up until that point, she needed some type of pain medication each day or needed to be encouraged to eat or drink. Twenty five days is a long time when you are trying to give medications and drinks to a patient that is unwilling! After all her bleeds and complications, we were slow to let her eat foods with rough edges and allow her a full diet. We finally let her eat almost anything about day 35-40. (Jagged chips were offered later than that.)

Some thoughts for those considering a multi-level surgery:
1. Plan on more recovery time than the doctor suggests!
2. If you wear a bi-pap, make sure your team has a plan in place for safe sleeping post surgery. For Jaycee, her airways were swollen and sore as expected right afterwords. No one wanted her to wear her bi-pap right after surgery. However, she was dropping her oxygen saturation levels at night in the hospital. There didn't seem to be any thought about what we would do during this post-surgical time. When the concern came up in the hospital, members of the team had differences of opinion. We ended up using oxygen, which we had at home anyway, while she slept at night for several weeks.
3. Consider having a humidifier ready for after surgery, especially if using oxygen. We purchased a good humidifier after Jaycee's first bleed. We were doing frequent saline sprays to keep her nasal passages moistened, but we decided to use a humidifier too for another layer of comfort.
4. Be prepared. Have soft foods, lots of liquid options, and over the counter pain medications at home for discharge. We tried to avoid foods and drinks that were red, which was the hospital's suggestion so that we wouldn't mistake red food or drinks for blood in the event of a bleed. Although, Jaycee's bleeds were so significant that it wasn't questionable.

A year later, here's what we have noticed with Jaycee:
-We were told that we'd see the full effect of surgery on a sleep study within 6 months. Jaycee, because of her nighttime sleeping issues and inability to use her high pressure settings after surgery, had a sleep study completed 6 weeks after the surgery. It wasn't completed at the optimal time, but it was necessary for her situation. Even in that short amount of time, Jaycee's pressure was decreased to 15/11 and the rate was dropped. We were pleased with those results. Because Jaycee has been tolerating this setting, her team has decided to not repeat a costly sleep study yet.

-She can burp now. The surgeon thinks we are crazy and insists this surgery has nothing to do with burping, but something changed. Jaycee never burped prior to the surgery. We had never really thought about it before, but it was obvious after the surgery. Once she was recovered, Jaycee would burp and cover her mouth in surprise. She thought it was so funny and odd. A year later, she is still surprised by burps. Apparently, no one can explain this burping phenomenon but we insist it happened because of the surgery.

-Jaycee can literally cough out mucus. Jaycee never coughed up mucus prior to the surgery. She's sick with respiratory infections often, so this was a big change we noticed shortly after surgery. She would cough the mucus up and not know what to do because it had never happened before. It was another change in her body that she was surprised by. This, the surgeon agreed, is something that could have been changed by her surgery.

In all, I can look back at the surgery now and be thankful that we did it for the positive changes Jaycee has experienced. However, I was really regretting our decision while we were in the middle of her extreme pain, bleeds, and inability to drink. Last summer was quite brutal, and I was sorry that Jaycee felt bad for the majority of her summer break. But, I am glad today that the surgery is behind her, and it was beneficial.
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Tuesday, June 26, 2018

Movie Picks: Special Needs Parenting Edition

If you are like me, the easiest hobby to have as a parent is Netflix. If it's not officially a hobby, just let me live in peace please.

I generally have a nice time right before bed when I watch a DVD or stream a movie. It may take me 4 nights to watch that movie, but it will get done eventually. If you are a fellow parent out there with a child with a disability or special needs, then I have a few movie picks just for you. You know...if case you are searching through thousands of movies trying to figure out what to watch. 
1. Wonder  2017
The previews for Wonder interested me, but, like most movies, I see them long after they were on the big screen. In Wonder, a child with a facial deformity starts school for the first time, and everything that you would expect to happen in the film does.

I rented this movie with intentions to watch it with my 8 year old son. I hoped it would spark a conversation between us, and it did. To my surprise, my daughter joined in on the movie viewing as well and seemed to enjoy it.

There's all sorts of topics the movie brings out regarding bullying, acceptance, peer pressure, loneliness, and the sibling's perspective. This is a great movie for the whole family, and it provides an opportunity to have conversations about tough topics.

2. Arrival  2016
This movie has nothing to do with special needs...or does it? Amy Adams plays a character who must learn to communicate with aliens who mysteriously arrive on Earth. I know what you are thinking. Why is this movie on the list? You have to watch it and then you'll understand. Arrival absolutely tore me up when I watched it. There was serious blubbering happening after the movie ended. My husband had to ask if I was ok. It was that bad. Ha! I don't usually get emotional watching movies, but there was a certain aspect of the story that got me. I don't want to ruin the movie if you haven't seen it. But, there's a question within it. If you knew some aspects of your future life would be painful and difficult, would you still choose that life? Hmmmm...

3. Where Hope Grows  2014
This is a sweet little movie featuring an actor with Down syndrome as one of the lead characters. The person with Down syndrome in the movie is employed and is a valuable member of the community, which are both positive representations I like to see. The story line in this movie was so-so compared to my top picks, but it's a nice little movie to watch.

4. Monica & David  2009
Before the hit television show, 'Born This Way,' there was this amazing documentary called Monica & David. This award winning documentary follows a married couple in love who happen to have Down syndrome. The film explores the topics of independence, expectations, and parenting adults with disabilities. I loved peeking into the lives of this family and seeing perhaps what may be in store for myself one day.

5. The Shack  2017
The Shack...where do I begin? This is a faith-based film, which I know may not be of interest to everyone, but I absolutely loved this film. In the movie, a grieving father meets with God at a shack that was an essential place in his daughter's death. There, he bears his heart and soul out to God while God teaches him about love, forgiveness, and the complexity of trials. If you are a person who has struggled to understand why bad things happen or why our loved ones suffer, then this movie will be of help to you. Sometimes, I feel like faith-based films don't have the best scripts or actors, but The Shack is different. I had some insightful moments while watching this movie and tears too. Excellent movie!

I hope I've given you some cinema inspiration. Enjoy these movies in your spare time!
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Tuesday, June 19, 2018

Intellectual Disability: Preparing for Baptism

Last week, I had a post on Key Ministry's website offering ideas on how to prepare those with Intellectual Disability (ID) and Developmental Disability (DD) for baptism. If you missed it, check out the beginning of the post and then click the link to read. 

Baptism is a sacrament that many in the faith want to pursue. But, what if your loved one has an Intellectual Disability (ID) or Developmental Disability (DD)? Can they be successfully baptized? How do you help them understand and prepare for baptism?

As a Christian mother, I had a God-given desire to see my child with Down syndrome baptized a few years ago. At the time, she was 8 years old, nonverbal, and dealing with a myriad of health conditions.

I was puzzled, at first, on how to prepare and teach her, but then I realized I knew what to do. As a pediatric speech-language pathologist, I help children understand new situations and concepts all the time using multiple visual and auditory methods. I just needed to apply them to a religious act.

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Tuesday, June 12, 2018

Reading After A Diagnosis: A Cautionary Tale

Almost one year ago, my son was diagnosed with Ehlers-Danlos syndrome (EDS). It was a diagnosis that came after a few years of questions and unexplainable issues. In a way, the diagnosis was a relief after getting no answers for so long. During my son's initial diagnostic appointment, the genetics doctor gave me a few book suggestions that several families have found beneficial. I scanned through the list eager to find something to read. 

Within a week, I purchased one of the books, Joint Hypermobility Handbook. I started reading the book shortly after receiving it. A year later, I still haven't finished the book. In all that time, I have made it to page 150 of 220. Before you remark on my slow reading, I want to clarify that I have read several books in the past year on my Kindle. I have simply chosen to take my time with this book. Even though I was eager, I wanted to keep my sanity. 
You see, I've been through a diagnosis before. Nearly 12 years ago my daughter was born and subsequently diagnosed with Down syndrome. Within a month of her diagnosis, I had a stack of information and books. I devoured them like I needed them to survive. A fellow parent advised me to take Babies with Down syndrome: A New Parent's Guide in chunks and reference it when needed. I didn't listen. I read every word in that book. And.....it made me so very fearful. 

As I have written before, my daughter's diagnosis at birth seemed to trigger more emotions and fears for me compared to my son's. (See my post Diagnosed: Birth VS Childhood) I suppose I took in all that information about Down syndrome because I wanted to get a sense of my daughter's future, my future, and our future together. She was so young and tiny; there were so many unknowns. I read everything to understand my newborn but also to try to see the unforeseeable future. 

The new parent's guide book is lovely, and I don't want to sound like I'm bashing it. It has basic information for a new parent that is helpful. I fully support new parents reading this book- just not the way I did. I didn't use it as a reference when issues came up or to research certain topics. I read it cover to cover, and I walked away feeling very overwhelmed by all the possible things that my daughter may face. 

Celiac Disease? Atlantoaxial instability? Sleep apnea? Those sounded scary. Leukemia occurring 10-30 times more often in children like mine. What?!? Thyroid issues? Late toilet training. How long will Jaycee be in diapers? Therapy. Special education. IEPs. Yikes! It was ALL too much to take in at once. 

The book scared me. Every possible thing that could occur with someone with Down syndrome was listed. Of course not every baby would end up with all the problems in the book, but I didn't know what was in store for Jaycee. In the state I was in, which was a post-pregnancy hormonal driven state, I was not prepared for this information. 

I look back now and wonder what I was thinking. Why didn't I just put the book down? It was just a book of possibilities and basic information, not firm plans for Jaycee. The book sparked a ton of fear in me, so I recognized what was happening last year with a different book. 

I was smarter for child number two and his diagnosis. I started reading the EDS hypermobility book. There were "ah-ha" moments. "Oh that's why he does that," or "I didn't know that issue was related to his EDS." These parts were helpful to understand my son. 

But then came one too many bits of information that left me feeling unnerved. I felt it rise up in me again. The fear of the unknown for my son and the list of possibilities. Starting with...Pain that affects a person's ability to do certain jobs as an adult and requires several medications to control.

After that section, the reading stopped for awhile. I had to digest that and mourn my son's future with pain (or predicted pain). Then came sections on heart palpitations and POTS... After my daughter's heart problems in the past, this one kept me up for a few nights. I didn't want to think about my son having heart issues too! That led to a very long pause in the reading again, which was followed by a serious internal debate on if I should continue reading this book at all. I was starting to get fear and anxiety from the list of possibilities, but few applied to my son currently. Who knew which ones would apply to him ever?

After a few months, I started reading again..headaches. Not fun. Unique dental challenges. Ugh! A few more pages...I stopped. And there I remain on page 150 after beginning a year ago. 

I read the Down syndrome book like one pulls off a band-aid. One quick painful motion, but it was over. I knew "everything" I needed to know after it was completed. I didn't like how I felt during the process though. The EDS book has been read like option two for a band-aid's removal. Slow, methodical. The pain is duller but it's over a longer span of time. I'm still not done with that band-aid. I don't know what other symptoms will be described beyond page 150 and if I'll feel better or worse after reading them.

I know what I need to know for right now. I love both of my kids. Whatever happens in the future, I'll face it with them. Every person with a diagnosis is unique. There are no two children with Down syndrome who are exactly alike in their challenges, strengths, and weaknesses. Some of the things that worried me about Down syndrome didn't happen to Jaycee. The same will probably be true for my son. Whatever EDS brings to Elijah, I'll support him through it.

Right now though, he needs a mother with a clear mind not bogged down by fears and possibilities that sound hopeless. So I'll stay on page 150 as long as I need to be. Instead, I'll open up my Bible and read what God has to say too. I'll ask God to help me parent these remarkable children, and give me hope for our future.

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.
Romans 5:3-5 NLT
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Tuesday, June 5, 2018

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...
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