Thursday, November 16, 2017

Therapy Tip: A New Use for Bath Foam Toys

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

Using Bath Foam Toys for Language Building

Bath foam toys are often used with young children to make bath time more fun. These foam toys, like the 16 pack pictured above available in stores or online, are relatively inexpensive and easy to find. 

So here's what to do. Take the bath foams you have around the house (or purchase them). Grab a little water spray bottle like this one: 
Then head to your nearest glass door.

Use the spray bottle to wet a small area on the glass door, then place one of the foam pieces in wetted area. Tada! They stick! The young kids I have tried this with have really enjoyed it.

While you are playing with your child, here are some words and concepts that are targeted:
-Vocabulary Simply name the picture on the foam.
-Wet/dry Have the child touch the wet spot to really feel what wet means. Use a towel to make the glass dry again.
-My turn/your turn Take turns wetting the door to work on turn taking and saying 'my turn.'
-Up/high/low/down Use the child's shortness to your advantage! Have them say "up" before picking them up and helping them reach the top of the glass door to place a foam. Only do one foam at a time like this so you have many opportunities for them to say "up" (or whatever word or phrase your child needs to work on). Talk about the placement of the foams on the door using the words high or low.
-If you only have alphabet letters, you can work on:
      *individual speech sound imitation if your child has a speech sound disorder. (Example- Show the child the letter b, and model /b/. Have them repeat it.)
      *saying the child's name by spelling out the name with the letters.
      *naming letters of the alphabet for preschool age children.

Simple, easy, and fun! This is a great way to use a familiar item in a new way to build language. Give it a try!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, November 14, 2017

Love is...Consenting to a Surgery

The monitor beeps as numbers are displayed. 
There's constant scurrying outside the doors of the room.
My eyes strain to stay open after a grueling night. 
A whimper comes from my daughter's mouth. 

I take her hand, kiss her forehead, and say, "I love you, Jaycee." 

She says immediately, "Uh-uh!" (As in No!)

"Yes, I do. Mama loves you," I say with conviction. 

"Uh-uh," she retorts. 

I felt broken. 
She's miserable, and she blames me. 
She's partially correct. I consented to all this madness. My husband and I both did. 
Like many people with Down syndrome, obstructive sleep apnea (OSA) has been an issue for Jaycee since she was 3 years old. Having her tonsils and adenoids removed shortly after her OSA was diagnosed did not "fix" her apnea. Thus, treatment with c-pap started on my skinny, little 3 year old child. 

Over the years, her OSA has gotten worse. Some of it can be blamed on her weight gain (which has definitely been impacted by her health issues, hospital admissions, and prednisone use several times a year), but not all of it can. 

The first few years Jaycee had sleep studies, I prayed we would see improvements, and I prayed with confidence. Every time in the past 8 years of studies, it showed she was getting worse and needed higher pressures to force air in to keep her airway open as she slept. Eventually, she was switched to a bi-pap and on high levels of pressure. (19/15 with a rate of 15) I was told her pressures were so high that it was like driving down the highway and sticking your head out the window. More than one medical professional remarked how incredibly high her pressures were and wondered how she tolerated it. That fact is that she didn't tolerate the high pressures. She wasn't keeping her mask on at night. She was also beyond tired and ready for bed by 8 pm each night. 

In the last couple of years, several tests were conducted. Opinions were sought out. Options were made available. 

One professional nonchalantly suggested the best course of action would be to do a tracheotomy, which would bypass all the possible obstructions in the nose and the mouth. When I told this well-respected professional how I shocked I was by this option, he responded, "I don't see why you are so surprised. Your child is severely disabled. She doesn't even talk." 

As if that was a reason to do it? I never saw that "professional" again. A tracheotomy may have solved one problem, but it would have caused many new ones. It wasn't an option for us. 

And so we found ourselves going back to something offered 2 years prior, a multi-level surgery to address her obstructions. The first time the surgical option was offered, I said I would never do the surgery on my child. Things changed though, something needed to be done since Jaycee was no longer able to tolerate her pressures. Never say never! After a sleep endoscopy test which absolutely showed what was collapsing in her mouth and throat causing the obstructions, a plan was developed. 

We knew going in to this surgery that it was going to be hard as there were 5 places in her nose, mouth, and throat area that would be operated on. Jaycee's recovery was gruesome after her tonsil and adenoidectomy when she was 3. But, she was 11 now...older, stronger, and a much better eater. I was cautiously optimistic about her recovery. 

The surgery was absolutely worse than her tonsillectomy. Jaycee was older, but her response to pain was similar. As long as she felt pain, she refused to eat and drink. One night in the hospital was expected, but Jaycee needed a couple more. When we came home from the hospital, I tracked every ounce and she was barely meeting the daily goal to stay hydrated. Then she developed thrush- most likely due to the medications she was on post surgery coupled with the fact that she wasn't eating or drinking well. The thrush added to her pain and discomfort. The word stressful doesn't begin to describe the situation but it's the best word I have. (Other than horrible and terrible) She was in a lot of pain and had to be encouraged (often forced) to take anything by mouth including her pain medications. 

Then it got worse. Through the baby monitor one night, I heard Jaycee coughing. I went to her room to check on her and found she was coughing on blood coming from somewhere in her mouth. This is a long story, but I'll skip ahead to the part where Jaycee ended up back in the hospital for observation. 

About a week later, we awoke to Jaycee covered in blood again. A second bleed! Ugh! This time, the bleed had stopped by the time we discovered it. (Jaycee apparently woke up, took off her blood covered nightgown, changed into a new nightgown, and put herself back to bed!!!) Again...long story that picks up where this blog post began.... the emergency room with Jaycee arguing with me when I told her I loved her. 
I'm sure the surgery was confusing. I'm sure she didn't understand her pain. I'm sure it was all mentally and physically exhausting for her. It certainly was for my husband and I, and we didn't experience the pain of the surgery. I'm sure at that moment Jaycee wondered why her mother and father had allowed this to be done to her. 

Parenting is hard. Deciding what to do for your child with health problems is extremely complex as you must weigh risks and benefits. The decision to do the surgery was done with prayer, research, thoughts, worries, and hope for a better future. 

That surgery was 4 1/2 months ago. I still hate the thoughts of Jaycee's recovery and could talk to you for an hour about everything that didn't go as planned. I'll just say this. A sleep study just 6 weeks post surgery (which was only conducted so she could safely restart her bi-pap as we were using oxygen only after surgery) showed improvements already! The full effect isn't seen until 6 months post, but just 6 weeks later, Jaycee's pressures were dropped to a more tolerable level. We knew this surgery wouldn't get rid of her bi-pap machine. We were hoping for the result that occurred just 6 weeks later. Plus, Jaycee can now cough up mucus. She's never been able to do that! 

And so...
I sat in that emergency room feeling crushed from Jaycee's complications and her doubting my love. I wished for a time machine. I wanted to go back before the surgery and opt out of it to spare her of this pain. At the same time, I knew it would be better in the future after she was completely healed up. I had to simply give it time.

When I tell my daughter that I love her now, she says it back to me. 💓

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Thursday, November 9, 2017

Therapy Tip: Thanksgiving Ideas for Language

It's Thursday, which means it's Therapy Thursday here on the blog. Last month, all my posts were dedicated to Down syndrome awareness month, but the Therapy Thursday is up and running again. Like always, this is the day I share a tip based upon my experience as a pediatric speech-language pathologist and the mother of the child with special needs. Today's tip is:

Building Language During Thanksgiving

Thanksgiving will soon be here. I love using holidays to work on vocabulary and language skills. It gives me a chance to change up some of the things I do in therapy, which breaks up the routine for me and the child.

So, here's a few ways you can address some language skills using Thanksgiving themed items:

1. Make a turkey craft: 
There are many different patterns and ideas online on how to make a turkey for a simple craft. (Here's a link to some examples on a great website.) I have made turkeys out of brown construction paper with fake feathers. I have also traced the child's foot for the body of the turkey and traced the hands for the feathers. There's lots of different options out there. You can choose which type of turkey craft to use based upon the child's abilities.
I work with toddlers, so I typically do the simple crafts. Prior to seeing the child, I will have all the materials cut and ready to go. When you make a turkey craft in therapy, you can work on:
-Body parts: Name the parts of the turkey (feet, eyes). You can also have the child point out the parts on their body as they go along. If you do the craft that requires you to trace the child's foot and hand, you can reinforce foot, hands, and fingers as you do the tracing.
-Following directions: Making a turkey gives many opportunities for the child to follow directions. Think about combining directions to make them have 2-3 steps, so it will be harder for the child. Examples: Pick up the feather, and put it here. Get the glue, and put it on this.
-Attention span: Whenever you are doing something that involves multiple steps, you are helping the child stay focused and learn task completion. Don't let them stop until you're done!

2. Make a Thanksgiving card or collage:
Using clip art or free pictures online, you can easily print Thanksgiving related pictures. I typically use pictures of a pumpkin, leaf, turkey, boat, and a few different foods that are common on Thanksgiving. Sometimes, I'll print out a Pilgrim man and woman but call them 'mom' and 'dad' because those are common words I'm addressing with toddlers. I like doing these simple paste and picture projects because I can teach vocabulary as the child glues them on one at a time. Plus, they can look at this creation at home with their parents to reinforce the words.

3. Sort Turkeys:
If you search online, you can find turkey coloring pages (like these) to give you multiple options for some sorting activities. You can:
-Color sort: Color the turkey just 1 color but make 3 or 4 turkeys in this same color. Choose another color and make the same number of turkeys. Now, you can have the child sort through the colors (purple turkeys versus red turkeys). I have the child sort them into different baskets. I work with delayed 2 year olds, so sorting 2 colors is enough. But, you can do multiple colors if you want. Or, you can do 2 turkeys in 8 different colors and just look for matches.
-Big/little: Print out different sized turkeys and cut to size. Provide a basket for each size you are using. I usually just do big and little. Have the child sort through if the turkey is big or little. With toddlers, I make a clear distinction between the two sizes so it is not confusing.

Hope you can use some of these activities or adapt them for older children. Most of these take minimal advanced preparation and materials. Happy Thanksgiving!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, November 7, 2017

Diagnosed: Birth -VS- Childhood

I have been doing some thinking (too much probably) about my children and their paths to diagnosis. If you have ever read this blog, then you'll know that my daughter Jaycee was diagnosed with Down syndrome at birth 11 years ago. Just a few months ago, my son was diagnosed with Ehlers-Danlos syndrome at age 7. (If you missed the post on his diagnosis, you can read it here.)

Photo Credit: Short Photography
I responded much differently to each of their diagnoses. After Jaycee was born, I was in complete shock. For 9 months, I thought I was going to have a healthy baby girl. Learning at birth, she had Down syndrome, an AV canal heart defect, and would need an open heart was too much! I had a very hard time adjusting to the diagnosis.

With Elijah, the news of a diagnosis was sort of a blessing. I began having some small concerns with him around age 2 when he couldn't run without falling. He ended up in physical therapy and occupational therapy for his low muscle tone for years. There were times when I would be very confused about some of his problems. Why did he have low muscle tone? Why is he "uncomfortable" sitting? Why did his toes bend in funny ways?

I researched some of his problems and ended up with no answers. There were times I was really fixed on finding an answer. There were other times when I would tell myself that whatever was wrong with him must not be too bad. After all, he was age level in academics.

I took him to a few specialists looking to see if there was an underlying reason for his motor delays and muscle issues. The first orthopedic doctor completely blew me off. I mean completely. I was treated like an over-reacting parent. I was told his problems were minor and weren't really impacting him. I disagreed in some respect because he did need both physical and occupational therapy after standardized testing showed severe delays in his motor skills.

The second orthopedic person I took him to a couple years later examined Elijah for less than 2 minutes. He told me he was fine. His gait (the way he walked) was strange, but nothing to worry about.

I was done.

Let me tell you something. There's nothing worse than having some legitimate concerns about your child, and a doctor can't even spend 5 minutes checking into things before he determines there's nothing wrong.

By the time I took Elijah to a podiatrist to look into some shoe inserts, I was not expecting anything earth shattering. This man took an interest in my son. He wanted to hear about some of his problems because he noticed something with him immediately. In less than 5 minutes of watching him walk, run, jump, and move his body, he told me he suspected Ehlers-Danlos syndrome. (We later saw a genetics doctor who confirmed the diagnosis.)

So you see, my son's diagnosis was different. It came after years of questions and second-guessing myself. After knowing what the problem was, so many things made sense. The information was helpful, and it let me finally understand my son.

The future of chronic pain and joint problems in store for Elijah was depressing. That part of the post-diagnosis reaction was similar to learning about Jaycee's Down syndrome and associated intellectual disability. The parts of the diagnosis that are predictive in nature were tough for me for both kids. There are some things about each diagnosis that sounded scary. Unfortunately, time is the only thing that reveals how a diagnosis will manifest in an individual...not information in a book.

I handled Elijah's diagnosis easier in some ways. I had 7 years with my son before he was given a life-long diagnosis. I had time to see my son's personality and strengths. This kid was memorizing sight words at age 3 and begging to sit in his sister's home therapy time with me. He's the kid with a love for presidents, state capitals, and state capital buildings. He loves playing guitar and beating on his drum. Before Ehlers-Danlos syndrome, there was Elijah. I knew that sweet boy well. After his diagnosis, he was the same kid with a different possible future.

It was different for Jaycee. She was born and Down syndrome was there immediately. I had no time to get to know her. Down syndrome was a dark shadow cast over her for so long. I couldn't see past it. Maybe it was because the NICU doctor literally pointing out everything on her body that indicated Down syndrome. I looked at her, and I saw only Down syndrome initially. She was also a baby with a heart defect. She slept and slept and slept those first few months. Her personality, preferences, and opinions became known over time. Jaycee was in there all along, but I knew Down syndrome more than I "knew" Jaycee at first.

Getting a diagnosis for your child at any time is hard. It's an emotional roller coaster, and it changes the life course for the parent and child. But, a diagnosis isn't the totality of a person. There's an individual person with a diagnosis. That person has a personality, attitude, opinion, and my love. That love and bond is stronger than any diagnostic term. I knew after Jaycee that we could get through any present and future diagnoses, because our love was great. By the time Elijah's diagnosis came around, I knew this well. I knew I could face that future with my son, because love has a power to want to conquer all obstacles.
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Tuesday, October 31, 2017

Down syndrome Awareness: The Finale!

For 31 days, I have shared stories, thoughts, guests posts, and information.

For 31 days, readers have visited this site.

And, I hope that somewhere in that 31 days I have reached a parent with a newly diagnosed baby and assured them that they can do this. I hope I've given a perspective on topics related to Down syndrome that can help families, therapists, and the general public. I also hope that my stories of my daughter's life have helped people see that life with Down syndrome isn't disastrous. In fact, it can be very, very good.

Thank you for stopping by here throughout the month and taking the time to read.
The top ten countries that represented the readers this month were:
-USA (Thanks, fellow Americans!)
-United Kingdom
-South Korea

The 5 most popular posts during this month were:
1. Help That Hurts (Guest Post by Dana)
2. Siblings, Down syndrome, & A Hole in the Ceiling (Guest Post by Ger)
3. Are Kids with DS Stubborn?
4. My Worst Day with my Daughter with Down syndrome
5. Awkward Moments: Special Needs Edition

If you missed one of these, take time to read them. They are all great!

Check us out on Facebook too!!! I put a few extra things on FB this month.

Hope you come back next week!
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Monday, October 30, 2017

Meet Roshni: No Limits with Down syndrome

Today, I'm welcoming writer and mom of a toddler with Down syndrome, Sruthi, to this blog. Sruthi has been mentoring a young adult with Down syndrome named Roshni and would like to share her accomplishments today. 

Roshni is a 19 year old young woman with Down syndrome who enjoys life to the fullest! She is one of four siblings. She has a brother -25 and two younger sisters ages 14 and 13. She is a wonderful, kind, and helpful older sister to her younger sisters.

She attends a college transition program through her school where she is gaining work experience through various internships. Currently, she is interning as a teaching assistant in a KG classroom and loving it!

Roshni enjoys cooking and preparing her favorite dishes such as guacamole, Mexican dinner, and smoothies. Her guacamole is out of this world delicious! 

She likes to try all different kinds of foods but Indian and Mexican foods are her all time favorites. She aspires to be a chef one day.

Roshni loves to listen to all different kinds of music and enjoys learning the lyrics and singing along to her favorite songs. She also enjoys playing basketball, tennis and swimming. 
In her free time, you will find her constantly drawing and creating abstract pencil drawings. These pieces are quite remarkable. She is also taking a class in school where she is learning to create art pieces using technology such as various iPad apps. She has created many unique and artistic pieces which have been chosen to be displayed at her school art gallery.

Her latest adventure is learning how to make home made bath and body products such as soaps and body butter. She is also learning to sell her handmade products. She is enjoying learning this new skills, and we hope she can be an entrepreneur like lots of amazing young adults in the Down syndrome community.

It sounds like Roshni is a busy gal with an exciting future ahead of her. Thanks for sharing Sruthi! You can read more of Sruthi's writings on the site No BS about DS.
You can see some of Roshni’s soap creations at
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Sunday, October 29, 2017

Siblings Who Like Each Other

Happy day 29 of Down syndrome awareness month!

I have almost made it through the whole month- sharing a post each day on some topic of Down syndrome. Today, I'll show a candid video I took of my kids. 

My kids (ages 11 and 8) really like each other. Truly... They may have some small squabbles, but they get along really well. My son (who is actually younger) jumps in and helps Jaycee without being asked sometimes. He is aware she may need help, and he just does it. He's a great brother! 

A few weeks ago, the kids were bouncing on a jump pillow at a campground when I took this video. My son noticed Jaycee's balance was a bit off since there were other children jumping on this inflatable at the same time, and he did this: 

People wonder all the time what the dynamics are in a family like mine. They wonder if their children will form good relationships. I hope this video is the proof some people are looking for!
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