Monday, October 16, 2017

Speech Therapy & Down syndrome: When & Why

I've been blogging everyday in October for the 31 for 21 challenge- where bloggers write each day in October for Down syndrome awareness month. Today, I'm sharing a popular post from earlier this year. Because my daughter has Down syndrome and I'm a pediatric speech-language pathologist, today's topic is near and dear to my heart. So, let's discuss:

When should speech therapy be started for babies/toddlers with Down syndrome? And why?

With all the research that has been made over the years, it is indisputable that early intervention for babies and toddlers who are at risk for developmental delays helps the child. The question becomes when should certain therapies begin. 

But it really isn't a simple question to answer. Most articles regarding speech therapy and Down syndrome that I have read suggested an evaluation by or at 1 year of age. However, it is rare to find an article to state a specific age that all children with Down syndrome need to be evaluated by a speech-language pathologist. I believe this is because we know that the language of a child with Down syndrome will most likely be delayed whenever testing is completed. But, each child has their own family structure, health history, strengths, weaknesses, and motor abilities to take into consideration. That's why this is somewhat of a individualized decision.

First...What would speech therapy look like anyway in babies and toddlers?
If your baby with Down syndrome is under the age of 1, then most likely the treatment will primarily (or only) focus on feeding and oral-motor abilities. There are babies, like my daughter, that struggle to suck, eat from a spoon, accept a variety of textures, or drink from a straw. These types of issues can be addressed with early speech-language intervention. There are some babies that nurse or drink from bottles without any concerns who wouldn't need this type of intervention.

Still, there may be concerns with the baby's low muscle tone and tongue protrusion that would warrant early speech therapy. A speech-language pathologist who has taken courses with Talk Tools, for example, will know some of these strategies that can assist with these oral and feeding concerns.

If feeding and oral motor is the focus, the family and therapist may decide how much and how many sessions are appropriate. Some therapists do intensive, short term therapy to build skills. Others may do weekly or monthly visits with the focus on training the family to complete activities at home. Again, these are decisions that are made individually.

Speech therapy that begins after age 1 may start to address language delays. This may include building the child's ability to use gestures, introducing sign language, encouraging vocalizations or words, helping them understand familiar words, and following directions.

Libby Kumin has written many great books and articles on the development of language and treatment strategies for those with Down syndrome. You can click here for one example.

Deciding when to Begin:
While I believe early intervention is key, I do feel that there are several factors to consider when deciding what is best for a child with Down syndrome. Some of these are:
  • Family priorities: What are the main concerns for the family? In early intervention, we as professionals are told this is the guiding force that helps us make decisions. Even if the child may show big delays in language, we aren't suppose to push for speech therapy if the mom is mainly concerned about motor delays. The priorities and concerns of the family is a one thing to consider.
  • Health & Medical Status: For babies with feeding issues, any digestive health issues need to be considered. Reflux and constipation, for example, need to be addressed medically and may affect progress in feeding therapy. Cardiac conditions may affect feeding as well and the energy level of the baby or toddler. This may be an important factor to consider if the child is getting multiple therapies in one day.
  • Hearing: Ear infections and related conductive hearing loss are common with Down syndrome. A child's hearing history or concerns is a factor when considering if/when speech therapy should begin. Hearing loss or ear infections would put the child more at risk, and therefore may suggest therapy is indicated.  
  • Other delays: Global delays in development are usually found with children with Down syndrome. When deciding on starting speech services, the team and family need to look at all delays present and consider how one may impact another. Fine motor delays may impact the toddler's ability to mimic sign language. Gross motor delays in babies will affect the speech-language pathologist's decision on positioning for feeding, for example. Therefore, speech can rarely be considered in isolation. The baby/toddler's overall development needs to be considered when deciding to begin speech therapy.
  • Age: The child's age is always key. Sometimes there are agency rules, state guidelines, or program rules that state when speech-language therapy should or can begin. Some may consider 12 months too young to benefit from speech therapy that only focuses on language development as motor skills are still developing and attention spans are short. Some programs will not allow evaluations that are for language only to be completed for children under 18 months. Eighteen months is a common age to see speech therapy evaluations take place in any child without Down syndrome, since this is often the age when delays become noticeable and walking is established. It is important for parents and professionals to know the guidelines and rules that apply to them.

The take away
Every child with Down syndrome is unique. Each baby and toddler with Down syndrome needs to be evaluated while considering all the multiple factors that come in to play in order to determine when services should start. The earlier speech-language therapy starts, the better. However, therapy may be more productive when certain skills and milestones are met. It is my belief that every child with Down syndrome should receive a speech-language evaluation around 18 months of age and earlier if feeding issues (gagging, poor sucking, only eating pureed foods) are present.

This information is for educational purposes only and not intended as therapeutic advice.
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Sunday, October 15, 2017

October 15- A Day to Remember

Today, I'm pausing from my Down syndrome awareness month writing for another special date.

October 15th is Pregnancy and Infant Loss Remembrance day. It is the day for parents to come together, grieve over their baby, and to recognize their loss.

Between the births of my two children, I experienced such a loss. There is barely any evidence that the tiny life inside of me ever existed. I have a couple of early ultrasound pictures tucked away in a box, but that is all the "proof" of what should have been my second child.

At 11 weeks into my pregnancy the baby was suddenly and abruptly no more.
I didn't know the baby's gender.
I didn't have a name for the baby.

It was extremely hard during and after the miscarriage both physically and mentally. I knew it was early in my pregnancy and something could happen, but I was hoping it wouldn't happen to me. I, like many other woman, tried not to be excited about the pregnancy so new, but the excitement came naturally after the positive pregnancy test.

But then, that life was no more.

Afterwards, there were people who tried to help me but did emotional damage instead. They said things like:
You're young! You can try again.
There was probably something wrong with the baby, so you're probably better off. (Really? My first baby was born with Down syndrome. Why would someone say that to me?)
It was still early. This happens to lots of people.

These comforting words didn't comfort me at all, because they didn't recognize the life that could have been. They didn't feel the excitement of the positive pregnancy test, and they didn't hear the baby's heartbeat in the doctor's office. Sure I needed to move on, but I also needed to grieve. Grieving is something that is seldom allowed in a miscarriage situation.

There were some wonderful women who whispered in my ear, "I had a miscarriage too. It's hard, but you'll get through it."

They were right. It was hard. And after some time, I did get through it. Having my son about a year later helped me tremendously. It was a baby that I wanted after all, and a baby in my arms eased my pain. I felt for the other moms out there that experienced multiples losses or miscarriages without ever receiving a baby of their own to hold.

So today, I stop and think of that baby who would be 9 years old right now. I wonder what may have been for that child and I.

Today, I also think of other mothers out there like me. I hope you were allowed to grieve and reflect after your loss occurred. But just in case no one ever told you, I'm sorry for your loss. I'm sorry for all the pain and heartache you went through. I'm sorry things didn't work out for you like they do for so many other women. I hope you are healing and have found a healthy way to cope. I hope today you'll join me in remembering our sweet angels that were born into Heaven.

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Saturday, October 14, 2017

My Daughter: Reading & Talking

I've chronicled Jaycee's verbal speech development over the years on this blog. For years, Jaycee was "nonverbal" due to her severe childhood apraxia of speech. She relied on her communication device and sign language to communicate during this time. She slowly improved her skills and built a base of spoken words. That led me to refer to her as "minimally verbal." (Here's an old post about her move from nonverbal to minimally verbal.)

Jaycee's verbal speech continues to improve. At age 11, she is attempting to speak now more than ever. As a pediatric speech-language pathologist, I must admit that I didn't have much faith that she would develop verbal speech after age 10, but she is proving me wrong. It's exciting to hear her new words, which allows me to get a fuller picture of what she understands and thinks about.

Jaycee still does a combination of words, gestures, and communication device assistance for a total communication approach. But, her voice is becoming her primary way to communicate. Yay!!

So, today I share a short video of my child reading single words with her voice. Some of the words are clearer than others. Jaycee can read simple sentences, but I choose to video single words instead.

Here's Jaycee reading some words out loud:


This post is written for Down syndrome awareness month- a time to celebrate achievements like this! 

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Friday, October 13, 2017

My Son Explains His Sister's Down syndrome-Again!

For the past couple of years, I have had my son answer some simple questions about Down syndrome and his sister. Elijah's life has always involved his sister with Down syndrome. It has been his norm for 8 years. He has grown up attending Down syndrome walks, doctor's appointments, and other events like Special Olympics. His childhood has been much different than mine.

Some of these questions are hard for Elijah because he truly doesn't see the differences. He just accepts his sister for who she is and nothing else. Here's his responses:

What is Down syndrome?
It's when you have an extra chromosome. You can't get rid of it.

What are some problems that Jaycee has?
Communicating and talking! Spelling is a big problem for her. So is writing too!

Jaycee has obstructive sleep apnea. What is sleep apnea?
It's when you have a problem when you are sleeping. Jaycee wears a bi-pap for it.

What do you think is something that is hard for Jaycee to do?

School work and home work are hard for her. She's doing easier things than I am, and she's older.

What is your sister really good at?
She is good at eating. Her teeth were pulled out, and she still ate! She's also good at sign language. Jaycee is good at cooking pizzas.

Is it hard having a sister with Down syndrome? Why?
Yes! It's hard to take care of the stuff she needs. Her bi-pap, vest, nebulizer, puffs (our word for inhalers) are all hard. It's a lot of stuff to do.

For the record, my husband and I do these things, but I guess it mentally wears him out. Ha! These things are all related to her lung problems and not Down syndrome. 

What do you think other kids should know about Down syndrome?
It can be hard to take care of people with Down syndrome. But, Jaycee is really nice. I would want other kids to try to be Jaycee's friend.

Want to go back to our other interviews??
Here are Elijah's answers in 2015 (age 6)

And here they are from last year (age 7)

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Thursday, October 12, 2017

John 9: Hope For the Special Needs Family

There are some scriptures in the Bible that have resonated well with me since giving birth to my daughter with Down syndrome. This passage is one of them: 

As Jesus was walking along, he saw a man who had been blind from birth. “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”
“It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him. We must quickly carry out the tasks assigned us by the one who sent us.[a] The night is coming, and then no one can work. But while I am here in the world, I am the light of the world.”
Then he spit on the ground, made mud with the saliva, and spread the mud over the blind man’s eyes. He told him, “Go wash yourself in the pool of Siloam” (Siloam means “sent”). So the man went and washed and came back seeing!
John 9:1-7 NLT

Now, some people might read this passage and conclude that all people with disabilities need healed. I believe this is why many people in the church have felt comfortable and "right" about approaching Jaycee and I over the years to pray for her to be healed of Down syndrome. I'm not going to discuss this point today, but I'm going to try to show you something else that speaks to me in this passage. 

When I read this passage 11 years ago after giving birth to Jaycee, the question the disciples asked Jesus hit me hard. They saw a man born blind, and they wanted Jesus to explain which person's sin caused the blindness. They wanted to know why it happened. They wanted to know whose fault it was that a baby would be born blind. 

I wondered how many people in that village had the same question and opinion. I wondered how many times the parents looked at their blind child over the years and wondered what they did wrong. I wondered if they felt guilt or ashamed from the looks, assumptions, and questions. I never thought about the parents in this story until I had Jaycee. I always understood the curiosity of the disciples. But, after having Jaycee, I felt for those parents. 

You see after Jaycee was born, there were many, many people searching for the "answer" of why my baby was born with Down syndrome and a heart defect. A few did suggest my own or my husband's sin may have been to blame. I was encouraged to pray and repent and see if my daughter could be healed. When she wasn't, I was told to dig deeper and pray harder to help my child. They looked at my daughter and believed her diagnoses must have been sin related. This caused me to feel like a second class citizen in the Christian world. My family felt marked.

Me with newborn Jaycee
Still others saw my newborn daughter's diagnoses as something from God. They said I was strong enough or special enough to catch God's attention to receive a gift of a child like this. They wanted me to embrace the diagnoses.

You know what I was after all these opinions. Confused!

Opinions are many when a diagnosis comes. That's a fact now and appears to be a part of the culture way back in Bible times too.  

Jesus responded to the disciples that no one sinned to cause the blindness. It was no one's "fault," and it was merely for people to see God's power. In other words, the disciples were way off! They were viewing the man and his parents with some judgment (deciding sin caused the physical disability). 

This showed me that you can be very close to God and develop wrong conclusions. The disciples walked with Jesus and heard his teachings. They were close to him, yet they came to some very wrong conclusions about the parents and the man. Had they not talked to Jesus first about the situation, they may have talked to the blind man or his parents about their sins trying to "help" them. They may have driven the family farther from God instead of bringing them closer.

That was something good the disciples did. Before they talked to the man who was blind, they talked to Jesus about it! The information they got from Jesus was revelation to them!

Over the years of raising a child with developmental and medical problems in the Christian faith, I have had to keep this passage in mind. The first point being that many people are searching for answers in my situation, not just me. Secondly, very faithful Christians may get some things wrong because not one of us have God's perspective. People will say wrong things to me, and I need to be able to respond to them with grace and forgiveness. I can also teach people about their wrong assumptions and help them see beyond a disability. Finally, we all need to set our opinions aside and ask God for information on a situation before opening our mouths. We could really do permanent damage to a person's spiritual life if we speak without God's wisdom.

This is why John 9 is one of my favorite Bible passages. God has heard every accusation against my family. God has seen people who have tried to minister to us when we didn't ask to be ministered to. God has heard my questions and seen my tears. He has the answers we are all seeking. He has all the wisdom. He is the hope even when others make me feel like there's no place for Down syndrome in the church. God is the one who embraces my daughter's soul and can help others do the same.

Thanks for stopping by today! I'm taking part in the 31 for 21 challenge-where bloggers write for all 31 days in October for Trisomy 21 awareness. Happy Down syndrome Awareness Month!
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Wednesday, October 11, 2017

My Worst Day with my Daughter with Down syndrome

I have had some hard days with my daughter with Down syndrome over 11 years.

You may think the worst day with her was the day she was born when I was told she had Down syndrome and an AV canal heart defect. That was a chaotic and scary day, but it had some joyous times too. No, that day wasn't my worst day with her at all. I was happy to be a mother for the first time!

You may think the worst day was the one that I handed my 3 month old baby off to a surgical team for her first open heart surgery. That was a hard day. The day she was 2 years old and it happened again was another rough day filled with anxiety. But still, it wasn't the worst.

Perhaps, you think it was the day I walked Jaycee into school for the first time. Alright, none of you probably thought that. Letting go of my tiny 3 year old's hand did require a new courage from me though, but no- that wasn't my worst day.

You may think that our worst day together was the day Jaycee hemorrhaged at home after a surgery when she was 3 years old. Yep, that was a really terrifying moment that caused panic, but not the worst.

You may think the worst day was when I saw a group of girls roll their eyes and "play" run from Jaycee. That day sucked, but I made it through it. Jaycee never caught on to their games, which made it better in some way.

I'll spare you of any more possibilities. Let's get to it.

The worst day was the day that my daughter was on the verge of death. It was a little over 4 years ago when my daughter was sleeping in an Intensive Care Unit's hospital bed sick with pneumonia. Without warning, her blood pressure dropped and a herd of doctors scurried in the room. Multiple IVs were started to push fluids. I left the room in a puddle of tears as Jaycee was being placed on a ventilator (something she needed for 3 weeks). Hours later, Jaycee was somewhat stable so I could finally see her again. As my husband and I neared her room, two doctors met us at her doorway. We were told Jaycee was in septic shock, in cardiac failure and pulmonary failure, and not doing well on maximal support of the ventilator. We were told she may not make it. We were asked if we wanted to see a clergy, and we were encouraged to call close family in to see her.

I walked into her room, which was filled with IV pumps and machines. I held her hand. I prayed with her. I told her to fight. I stared at her monitor and willed the numbers to improve. I jumped with every alarm and held my breath until it stopped. My husband did the same thing.

This was by far the worst day with my daughter. It had little to do with her Down syndrome and more to do with crummy lungs and a perfect storm of complications. For three weeks, Jaycee's life was in limbo. I prayed and pleaded for her to live. That might surprise some people. Some people may think I'd be better off not having a child to care for the rest of my life. But, they don't know the love I have for my child. I wanted her to live more than ever. Her life was worth it all, and I wanted nothing more than to see what her life could become.

Four weeks later when Jaycee arrived home in a wheelchair, it felt like the best day in the world. It felt like a miracle. It was a miracle!

Life is sometimes hard and unpredictable. It's not easy having your child endure multiple surgeries, complications, and rough spots in life. But, my worst day with Jaycee taught me to appreciate all the other days with her more. Her life is precious. I've never forgotten that since that "worst" day when I almost lost my sweet little girl. Glimpsing into death really did teach me not to take her life for granted. I hope I never do...

This post is written for Down syndrome awareness month, which is an opportunity for bloggers to write all 31 days in October for Trisomy 21 awareness. 
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Tuesday, October 10, 2017

Last Week: A Missing Husband, A Dentist, and A Dead Fish

Last week was rough for many reasons.

My husband was out of town for work all week. When I wanted to watch 90 Day Fiancé, my husband wasn't home to protest. That is the one positive thing about being the only adult at home. Beyond that, it's kind of hard to suddenly do things without help when you are accustomed to having it. Jaycee's morning and evening medicine runs were all on me. The bi-pap at night was placed on Jaycee every night by good ol' mom. The school drop offs and pick ups were all me. The homework fun was all my department as well. Did I mention I work too? (Kudos to all you single parents out there!) It's an adjustment being the only one at home. But, then let's throw some added stress into a new routine with a dental procedure.

In the middle of the week, Jaycee had 10 baby teeth pulled. (Yes, 10! Her baby teeth just wouldn't fall out!) Because she aspirated the last time she had other baby teeth pulled and ended up in the ICU for several days, this relatively routine procedure had to be treated like something more. To keep her safe this time, we had to do the teeth removal at the hospital under sedation with her on a ventilator. Since my husband was away at work, I took Jaycee to the hospital solo and had to make arrangements for my son for 24 hours.

Everything went well, but there were two unsuccessful IV attempts Jaycee went through as well as some pain from the procedure afterwards. Even though this procedure was "uncomplicated," it still required time off work, schedule adjustments, and more medications to dose out for a few days.

Before the pain and misery, Jaycee was all smiles with her iPad and Beast doll.

That leads me to the dead fish. (Sigh) Let me first make it clear that I am not a morning person. I'm not thrilled to be waking up at 6 am every weekday, but I deal with it. I'm an adult after all! Anything before 6 am just feels wrong! The morning of the teeth extraction I had to wake at 5:30. I was already not in the best mentality when I came to the kitchen to prepare Jaycee's medications. Then I saw my son's fish floating in the aquarium.

Here's Redhead the goldfish on his first night in our home last month.
My son won this goldfish, which he named Redhead, at our town's fall festival last month. Honestly, we walked up to this game, and I didn't even know he was playing to win a goldfish. On his 11th out of 12th toss, Elijah scored, and a fish was ours. The next day, we bought an aquarium, rocks, food, and all the accessories. This $2 goldfish became a $70 investment. Did I mention we got him a friend? Jaycee chose a beta fish named Daddy Beast. (He survives.) We warned Elijah that goldfish are tricky to keep alive. As the days turned to weeks, we thought we were in the clear until that fateful morning. 

I have to admit that I cried a bit when I saw that floating fish in the aquarium. Should I flush him? What if it clogs our toilet? My husband isn't here to fix that problem. Should I throw it outside? There's no time this morning to bury the thing, and I didn't want the cat to traumatize my son with a half eaten carcass. I chose to throw it in the garage before taking it to the dumpster. Jaycee and I did say a short prayer first committing the fish to God's kingdom if he so desired. The death had no effect on Jaycee just FYI. Luckily, my son was spending the night with my sister-in-law who was responsible for getting him to school that day, so I was spared of his heartbreak for a few hours.

That night, I had to break the news to Elijah. My husband was on FaceTime and provided words of support as best as he could from two hours away. Elijah handled his first dead pet pretty well. 

By Thursday morning after all the chaos, I was spent. The hospital tends to make me nervous and uptight. I had been managing all the care on my own and disposed of a dead fish. What a day! What a week!!! I was feeling very overwhelmed. 

This post isn't very encouraging is it? I'm all about Down syndrome awareness this month, yet I'm in the verge of a tiny breakdown. Hang in a bit longer though. 

I was reminded of something in all of this. 

Parenting is hard. 
Whether your child has Down syndrome, autism, heart problems, or a developmental delay, there are times you are going to feel overwhelmed. You know what else is true though.....
Parents that have no child with a disability or medical issues have these same moments. 
Jobs may change. You might have to do things without your spouse that you'd rather not. And pets may die. Every week can't be carefree. 
My child's diagnoses were a small part of the stress, but most of it was just normal life stuff making me feel a bit overwhelmed. (Maybe more than I want to admit.)

For me, I knew I needed God more in those moments. I knew I needed to take someone by the hand a few days later at church and say I've been overwhelmed the last few days with life. Will you pray with me?

Maybe you aren't religious, and that's something strange for you. Then I hope you have someone to talk to and a way to de-stress after a hard week. 

Down syndrome diagnosis or not, life can have its moments that make us feel like giving up. But, there is hope for all of us moms and dads.

When all the chaos quiets and my kids cuddle up next to me at night, there's nothing stronger than a determined mom armed with love to keep going.
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