Tuesday, May 15, 2018

Mother's Day & What I Lack

Last week, I had a Mother's Day post on Key Ministry's site. If you missed it, have a read:

I have a small struggle on Mother’s Day, and it’s for a silly reason.

A few years ago, my son developed a skill that my daughter has not, and this is what trips me up ever so briefly. When a holiday or my birthday comes around, my eight-year-old son thinks of me. He panics if my husband didn’t have time to take him shopping for a gift for me. He hunts around in his room to find special treasures of his to give to me to express his love. I’ve received a Santa hat, a teddy bear, and sea shells as gifts from such occasions. They are tucked away in my bedroom, and I think about him when I see these items.

Keep Reading...... Click Here: Why I Will Lack Nothing This Mother's Day

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Tuesday, May 8, 2018

Being a Mom in the Hospital

A mom finds herself in many situations. Most of which are expected with the title. Grocery store speed shopping is a favorite of mine. Googling answers for my son’s homework is becoming a more frequent activity at my house. Coming up with creative ways to bribe my daughter to comply with a simple request-that’s fun too. But, these are generally all expected as a mom.

To some extent, a mom can anticipate having some interactions with their child in the medical world. Well check-ups with a doctor and vaccines aren’t always fun, but they are a necessary part of life that most choose to do. Illnesses happen too. Dosing out medications and caring for a sick child is a hard part of being a mother, but it is temporary thankfully.  

But then there are women like me... We have mothered our children in the hospital for chronic conditions or severe illnesses. It is a situation that no one is prepared for -nor is it something one imagines when dreaming of their baby’s future early on. Yet, you learn to navigate the life you are given, even if it involves your child in the hospital.

Me and Jaycee-Yes, I am super tired from the hospital!

We have just finished up hospital stay 30 something for Jaycee. For those 30+ admissions, my plans- my appointments, work, and sometimes vacations- were canceled. I go where I am most needed, with my daughter to the hospital. Sometimes, I ride in the ambulance with her. Other times, I transport her myself with my van full of equipment like a monitor and oxygen. A couple of times, she went to the hospital in a helicopter as my husband and I sped there in our vehicle trying not to think about what was happening while we were separated.

I have spent as little as a few days in the hospital with Jaycee and as long as 4 weeks. There have been times when Jaycee craves my affection and love. I am happy to be there to kiss booboos and calm a scared and sick child. There have also been times when I have been pushed away. I am sure she wonders why I allow her to be poked and suctioned. Though she is 12, her mental age is more like a child under age 5 in some areas. She doesn’t understand everything that happens to her. Even though I have made visuals specifically for the hospital, supplement my words with sign language, and use simple words, a child who is terrified is hard to reason with. So if she pushes me away, I go across her hospital room in a chair as she wishes. I try not to take it personally and wait for her to receive my love again, which can take minutes or hours.

Being a mom in the hospital is tough. Before I get any farther, I want to clarify that my daughter has it the toughest. She has to endure it all, but this is my perspective as a helpless loved one who is at the mercy of the illness and condition beating my kid up. As Jaycee’s mom, I want her time in the hospital to be short and easy as possible with no setbacks. It is hard to stand by, watch numbers on a monitor, and wait. There is nothing I can do to stop things from getting worse. There is also nothing I can do to help her get better any faster. I must depend on the staff to make good decisions and figure out the right course of treatment. And, yes, I give my opinion when I think it will help.

As Jaycee has gotten older, my jobs in the hospital are pretty simple. Order her meals and help her once they arrive. Help with bathroom breaks and baths. Guide her through movie choices or put on music. Help with dressing and positioning of stuffed animals. I offer hugs and kisses and words of encouragement. I cheer her on when she is reluctant to take her medication. I help her FaceTime her friends and family when she is missing all her buddies. We call her brother every day and check on him. Unfortunately, that is about all I can do for him during our time of separation.  

The hospital is a hard place for a mother. It makes you see things you never wanted to see and be in situations you never knew existed. Some of the hardest things for me have been watching her be bagged, intubated, suctioned, and medically drugged. Looking at her body with PICC lines, central lines, arterial lines, catheters, etc. at different times hasn’t been easy. Some have left scars on her body. Though the time of the illness may be long gone, these remind me of her fight.

I have been called strong, a good mom, amazing, and a few other positive words. I am strong-sometimes good, but not on my own strength. It comes out of me when the situation arises. Sometimes, I think these admissions will break me emotionally. There are times I have wanted to give up, drive home, sleep in my bed for a night, and pretend my little girl didn’t struggle to breathe so often. It is a thought I have for a second. It’s not an option really though. I keep going until she is on her way to recovery and back home again. That’s where we all belong. Still, sometimes I break down frustrated with things I cannot change, fears for my daughter’s future, and from exhaustion that comes from an admission. Even strong moms get worn out.

As we approach Mother’s Day, I want to recognize the many roles of a mother. You never know what motherhood will bring to you and your children, but all life and time is precious. God is gracious to us and equips us with everything we need to help us through the good and the hard times as parents, even if we aren’t always able to see it at the time.

Motherhood doesn't stop in the hospital because there is a little life I helped create sitting in a bed needing me. I'll be there for her. That's what moms are for.

Happy Mother’s Day!

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Tuesday, May 1, 2018

Prayers for My Healthy Child

Last week, I had a piece on Patheos. Take a read, if you missed it:

Sometimes, I leave him in the middle of night to transport his sister to the hospital for an emergency. He knows when this happens I could be gone for a few days or a week or two.

Other times, I am gone an entire day for scheduled specialty appointments for his sister.

There are all sorts of reasons why my son is cared for by other family members a few times a year. Every time it happens, my heart is in two places. I go with the child whose health requires me to be present, but I’m thinking of the child not with me. The child with medical conditions and limited verbal speech obviously needs her mother. Still, there is a son left behind with emotional needs unattended by that same mother.
To Read More, Click the Link: 

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Thursday, April 26, 2018


It's Thursday!

Typically, I do Therapy Thursday on the blog. If you came here looking for it, you won't find it today. Last week was my last Therapy Thursday for the time being. I enjoy sharing that part of my life with you, but I have to stop for now.

I have several writing projects that I need to free up some time for in order to get them completed. I'm a little busy being a wife, working mom, running my kids to appointments, and putting up a never ending pile of laundry. If you are a parent, you get it. Free time is minimal, so Therapy Thursday is being left behind for now for other things.

Which brings me to my big announcement........

I am currently finishing up my first book of my very own. Yay! I've contributed to two books before, but this one is all mine.

For the past 2.5 years, I have worked on this book at night or on the weekends. Sometimes, I had 30 minutes to devote to writing it. Other times, I furiously typed for hours. There have been weeks and months when I had to focus on caring for Jaycee and the book went untouched. My kids came first obviously, so there were times when the dream of the book had to be placed on hold. It's been a long and tedious task, but the book is finally coming together. My plan is to have it completed and published on Amazon before the end of the year.

So, you'll still find a weekly post from me on Tuesdays here. If you follow the blog's Facebook page, then you be linked to other articles I write elsewhere. Of course, I'll announce the completion of the book here first. Stay tuned....
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Tuesday, April 24, 2018

Jaycee Gets a CT Scan...Finally

A 15 minute test took hours and hours of our lives last week, and it almost didn't happen.

Jaycee's pulmonary doctor wanted an updated CT scan, since her last one was 5 years ago. The doctor asked me if Jaycee would be able to tolerate a CT scan of her chest. I'm glad she asked for my opinion, because simple things aren't always simple.

Jaycee has Down syndrome. She's minimally verbal. She has had many, many hospital admissions, and this causes her great fear and anxiety with most tests and procedures. It took 3 of us to hold her down for a flu shot last fall, for example.

"If it just takes a few minutes, she'll be fine. I think she can do it," I told the doctor with assurance.

I meant what I said. But then came the paper from the insurance company. The document gave the preapproval numbers for the CT scan with contrast.

With contrast? Wait, what?

Yep, I googled it. Google told me that an IV type poke would be necessary to deliver the dye.

That changed everything. Bloodwork, shots, and IVs are all terrible experiences for Jaycee. She gets scared and moves, which makes more people have to hold her down. It's a vicious cycle that has kept going for years.

I had reservations about the scan, but I figured we'd get through it.

To prepare Jaycee for the test, I used a technique called video priming or video modeling. The technique basically involves having the child watch movies about a specific topic in order to prepare the child for a new experience and teach the child appropriate behaviors during that new experience. (Yay for my speech-language pathology degree!)

On Monday, we watched a few YouTube videos showing children getting CT scans. I sat next to her and narrated what was happening using words I wanted her to remember. ("The girl is getting pictures. She is with her daddy. She is happy. The pictures don't hurt. She's not crying. She's done. She is going home.")

On Tuesday, we watched more YouTube videos with me narrating again. By this time, Jaycee was signing back, "Me. Doctor. Pictures." I showed one video of a person getting an IV for the contrast CT scan. She didn't like that. She whined when she saw the IV part even though it was brief. That was a bad sign. Still, I pointed out that the boy in the video wasn't crying.

On Wednesday, I did more of a mix of contrast and non-contrast videos. She still whined and did a fake cry when she saw the brief IV part. I tried to remind her that no one was hurt or crying.

Thursday was the big day. "Me, pictures," she signed as we headed to the hospital. She was prepared! We made the 3.5 hour trip to the hospital. When we arrived, Jaycee was calm and happy. Sometimes, she starts getting anxious as soon as we arrive in the parking lot and refuses to get out of the van. She got out and walked inside smiling. She was actually fine up until the nurse asked her to lay down to get the IV inserted. The nurse put on gloves, and Jaycee was done. She saw the tray of IV insertion supplies, and she wanted no part of it.

The next 10-15 minutes were spent trying to get Jaycee to hold still so they could find a vein. One person looked with no confidence. Another person looked and couldn't find a vein either. (This is the story of her life.) Finally, a third person emerged who thought they found a vein worth trying to stick. Jaycee was ready for this fight and began to wiggle and squirm to keep the stick from happening. There were only 2 nurses trying to do the stick. The last few times she needed an IV in the hospital it has taken 4 or more people to hold all the limbs that frail around. The nurses were all patient, kind, and compassionate. But, they weren't going to get the IV in this way.

They finally decided Jaycee just wasn't going to be able to handle the contrast part of the test. They warned that the contrast dye will make her feel like her chest is burning and the sensation that she's wetting herself but she isn't.

They asked, "Do you think she can lay still for the scan while she feels those things?"


They listened as I explained how I felt that I had adequately prepared Jaycee for a scan without an IV. I could tell they were unsure if she would be able to be calm enough to do a regular CT scan. Still, they decided to call the doctor and get permission to do the scan without the contrast. Then the waiting began.

At this point, I wanted to cry. I didn't want to come back and do this quick test under sedation. That seemed a little overboard. I also didn't want to go home without doing anything. I didn't want the 7 hours of driving to be for nothing!

About 2.5 hours after our appointment was suppose to begin, we got word that we could do a regular CT. We were called back into a different room. Jaycee sat right down and followed all the directions as she signed "pictures." They fastened a big Velcro seat belt around her waist, but she never tried to get up. My mom held one of her hands above her head while I held the other one.

She did awesome! She was calm and happy. There was no fear in her eyes. Success!!

Jaycee celebrating that she was finished!

A simple test is never simple! I wonder how many health professionals know what some parents go through to get these things done. I'm just glad Jaycee's doctor allowed her to do the regular scan that didn't create so much anxiety and problems for her. In the end, everything worked out. I'm glad that we all worked together as a team and got her test completed.

And that my friends is how a 15 minute test can turn into a 3 hour test! 
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Thursday, April 19, 2018

Therapy Tip: When is a Language Delay Something More?

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

When is a Language Delay a Sign of Something More? 

Last week, I wrote about factors that may contribute to a language delay. (If you missed it, click here.) From that, you know that there are many things that come into play that may contribute to a child having a language delay. As discussed, some children will make progress in therapy and eventually be discharged. Other children have underlying issues going on that will require intervention for years to come.

When your child is 2 years old and you're a worried parent, how do you know when a language delay is just late talking and when is it a sign of something else?

To answer this question, let's talk about red flags. Red flags in the therapy world are characteristics that may signal an underlying condition that has not yet been identified or diagnosed. When a child has red flags, it may indicate that something else is going on other than just a delay in language. There are many red flags I could discuss, but I'll go over just a few today. Here are some things I look for when working with toddlers in speech therapy that may indicate something more than just a language delay:

-Slow to no progress in therapy: Speech therapy is usually not a quick and magical fix for most kids. Change takes place slowly over time. If a child has been in speech therapy for 6 months, then I should see some progress. The progress will look different for every child because each toddler is starting out at a different point developmentally. However, at the six month mark, a child who has made little to no progress is a red flag for me. If we started out with one word, and still have one word six months later, then that's a huge red flag. Again, it's difficult to explain what constitutes as slow versus adequate progress in therapy because all children are starting with a different set of skills. A therapist who has been in her professional for a number of years will be able to make that judgment based upon experience. Don't be afraid to ask your child's therapist if their progress seems expected or slow. But slow-no progress is a red flag.

-Difficult to engage in therapy: There are some children who after just a week or two of therapy get excited to see me and want to see what activities we will do. They plopped down on the floor and are ready to start the session. This tells me that they are socially interested in me, have discovered our routine, and desire to play with toys. These are the responses I look for after I come for home visits for a month or two.

There are a few children who don't seem to acknowledge that I am there or notice my arrival despite our weekly sessions for months. There are some children that notice me but don't care. Little to no eye contact during activities may happen as well. All of these responses are atypical. On the flip side, a child who is excited about therapy but will only sit for a minute or two despite a few months of therapy is also atypical.

When I bring up concerns about poor engagement in therapy, parents are usually quick to remind me that their child is just 2. I understand that. I also have over 10 years experience with two year olds. I know when a 2 year old is acting like a 2 year old or having a bad day versus a child who is consistently showing poor engagement. If a child is never wanting to engage with me, that's a red flag. If I have to "work" to keep their attention, that's also atypical.

-Delayed gesture development: Poor use of gestures is another red flag. If a child is not talking, then I always want to know about what types of gestures and nonverbal communication the child uses. Pointing and waving are important early gestures that toddlers need to communicate a variety of functions. Nonverbal communication like leading an adult to a desired object or bringing a cup to an adult to indicate thirst show attempts that the child is trying communicate. The fewer the gestures and nonverbal communication, the more concerned I am that something else is going on besides just a language delay.

-Poor imitation: Poor imitation comes in many forms. There can be poor word imitation, which would be expected when speech therapy first starts. Eventually though, the child should start to imitate words. There can also be poor play imitation. If I show a child how to push a train around a track, then I expect the toddler to imitate it. If a child can't imitate actions that I do, motions to songs, or play movements, then this is a red flag. Again, this is something that I don't expect immediately when therapy starts but it should come fairly soon after some intervention starts.

If I have a child on my caseload who is having red flags, then generally I will make a referral to a developmental pediatrician or speak with the child's physician. They might diagnose a child with a developmental delay, autism, or run further medical tests. If I feel the language delay may be a specific speech disorder (i.e. childhood apraxia of speech), then I may decide the child needs more intensive tests performed by me.

The most important thing a parent can do if you see some of these red flags is to ask your child's therapist about them. Open communication is key in these situations. If you are getting no where with your child's speech therapist, then talk to your child's pediatrician or get a second opinion with a different speech-language pathologist.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, April 17, 2018

Things That Make Me Go Hmm...

Parenting my daughter with Down syndrome, minimal verbal skills, and Intellectual disability is fun, exciting, challenging, and sometimes mystifying. 

Everyone in life seems to have certain preferences and routines. My daughter, Jaycee, is no different. Some routines in life, I have helped her develop. From an early age, she watched me pick out her clothes and place them on her closet doorknob. At some point, she started picking out her own clothes for the next day and placing them on her closet doorknob. She doesn't like to go to bed if her clothes are not set out for the next day. That routine is all me. I'm responsible for teaching her that. 

Sometimes, I don't know where my daughter's routines and preferences have developed. She has things that she does that just makes me go hmm. Why does she hate pillows on a couch so much? We have pillows on our sectional at home. The pillows aren't kept on "her" part of the couch. But still, where did her hatred of pillows sitting on a couch come from? She would rather see them on the floor than on the couch.

Speaking of the couch, she has her special spot on it where she likes to sit. She does her twice daily nebulizer treatments while she sits in her spot. Months ago, we had to start using a new nebulizer machine that had a shorter power cord. Suddenly, Jaycee couldn't sit in her usual spot to do her treatment. She needed to move to the other end of the couch. This threw her off for days. She was mad that she had to change spots and would get upset before each nebulizer treatment because she had to move. Her world didn't make sense anymore, but eventually she adjusted. Now, her new special spot is THE spot. 

Her glasses have a special spot too. Before she goes to sleep, Jaycee places her glasses on the nightstand parallel to bed. Never, never are the glasses perpendicular to the bed.
At the dinner table, Jaycee never mixes food. She always eats one food at a time. She will eat all her mashed potatoes, all her meatloaf, and then all her green beans. Jaycee never switches up bites of food. My son also eats this way, and I recall doing this as a child myself. This preference of Jaycee's carries over to when we are eating on the road. When I order Jaycee a happy meal from McDonald's, I can't hand her the box it comes in. That would be too simple. She will refuse to take it. She wants me to hand her the fries. When she's done with that, then I can hand her the sandwich. When I'm the only adult in the vehicle, it's kind of an annoying situation. Why won't she just take the box?!  

Here's my son when he was 5. He had to sort his M&Ms by colors before he would eat them. Kids develop funny habits! 

There's other things I can't figure out too. Jaycee hates it when I get into a vehicle before her. If we are all loading up to go somewhere, she cannot stand if I get inside the vehicle first. She will try to open my door in an effort to get me out. Sometimes, she will stand by my door and just cry. I don't know why this upsets her, but it does. I try to avoid it by letting her get in first.

As you can tell, there are some things my daughter does that I just don't understand. It makes life interesting and predictable for her and I. I don't know why or how some of the these things developed, but I've come to accept them. She is her own person and a pretty great one at that! Just don't sit in her spot when it's time for her nebulizer, and we'll all be fine! 
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