My Date of Birth & Other Things I Can't Remember

I have recently come to discover that parts of my mind have turned to mush. There's just too many things in my head. My grocery list, my to-do list, meal plans for my family, my work responsibilities, etc.

Caring for my daughter the past 10 years has meant a good chunk of my brain power has went into learning about her different diagnoses, tracking medications, operating medical equipment, keeping track of appointments, and remembering her extensive health history.

Through different scenarios, I have discovered how difficult some very simple things are for me for no good reason at all except that I have too much on my mind. They are:


My date of birth
Seriously, this is no joke. When someone needs my date of birth, I have to pause and take a second to think. I am accustomed to rattling off my daughter's date of birth at all of her medical appointments. I'm programmed to give hers and not mine. Sometimes the person waiting for my answer notices my hesitation, and I have to explain myself so they don't think I am giving a false identity.

My own health history
Yes, yes this is sad too. I really have to think about questions regarding my own past surgeries and hospital admissions. I shouldn't have to think, because I don't have anything to remark about myself. However, I am use to writing out an essay for these questions on forms for Jaycee. Before my pen marks "none" in the space provided on my health history questionaires, I have to take a second to remember that nothing has happened to me worth noting.

My last medical exam
I rely on my planner to keep track of all the family appointments. When the doctor does not automatically book my next appointment, I struggle to remember when I last saw them. Sometimes, I get to the end of the year and realize that I probably should have had some sort of physical exam for myself. All those times in the waiting room with my daughter have blurred together leaving me in a state of confusion as I try to remember when I was last in one for myself.

My hobbies
Oh good gracious! Please don't ask me what I do in my spare time. What are my hobbies? Hmmmm. Cross-stitching? I haven't done that in 10 years. Exercise? Nope--that would be a lie. Checking medicines and washing medical equipment probably doesn't count. Does it? I do dabble in writing I suppose. Does Netflix, Words with Friends, and Candy Crush count? My mind can't take too much more than that by the end of the day.


So, I may have a bit of trouble remembering some simple things quickly. But, there are some things that I don't have to think hard about. I love my family. I love my life. And, being a mother is the biggest honor, even if it means I lost the ability to say my date of birth quickly. 

Therapy Tip: Fun with Magnets!

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a mother of a child with special needs and a pediatric speech-language pathologist.

Today's tip is:

Fun with Magnets

One of the things I strive for in my therapy practice is to do activities that parents can replicate at home if they desire, which is why today's tip was created.

All you need for today's tip is a cookie sheet and magnets. Now, you have a way to work on vocabulary or articulation. I use a cookie sheet because I am traveling from home to home. You can use any magnetized surface if you are doing this at your home or office.

Possible language targets:
-Naming: Simply have the child tell you what the magnets are. Sometimes, I will find magnet sets that are all food or vehicles and use these to teach words in a category. I usually hold all of the magnets and give the child one magnet at a time to allow them to focus on the one important word.

-Identification: Hold up 2 magnets and tell your child to get 1 specific one. They get to put that magnet on the cookie sheet.

-Phrases: Have the child say a phrase or sentence to obtain another magnet to place on the cookie sheet.


Possible articulation targets:
-Imitating sounds like isolation: Have the child repeat consonant sounds using letter magnets  For example: Give them the letter /s/ and model for them "ssss"

-Multi-syllable practice: Choose magnet pictures that have 2 or more syllables. The picture below shows examples of this: elephant, panda, monkey, rhino, turtle, pony, butterfly, octopus, apple.

-Specific sound work: If your child is working on a specific sound like /b/, look through your magnets to see if any of them contain the sound your child is working on. The picture below shows magnets for /b/: bug, bunny, bear, boat, ball, baby, bee, and bird.

Where to find magnets:
Letter magnets are found pretty much anywhere. I have purchased some magnets at Dollar Stores. Some of the magnets I use are from magnetized books or activity boards that have fallen apart. I kept the magnets and ditched the boards that were no longer in good shape.

I recently purchased a set of 60 object foam magnets from Super Duper.

This set has a magnet for every alphabet sound, which was a great addition to the ones that I already have. I have been happy with this set so far. But, you don't have to spend a bunch of money on magnets to do an activity like this.

One caution.....When doing this with small children, always supervise them. Do not allow them to chew or mouth the magnets. If a child does start mouthing them, I discontinue the activity.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

What is a Woman Entitled to? Thoughts on pregnancy, babies, and abortions

There is a desire within many women to have children. It is a woman's right to have children if they are so able to conceive them. Many of us accept this right. There is no one in America forcing abortions nor are there laws limiting pregnancies or the number of children one mother can have. If a woman here chooses to have a baby, then they are generally supported under almost every circumstance.

Medical advances have even allowed women struggling to conceive to achieve pregnancy when they couldn't otherwise do it on their own. Fertility treatments are accepted in our society. There is support for the idea that we believe that all women should have the opportunity to bear children.

But what happens to that woman after there is a successful pregnancy?

Is it reasonable to expect a healthy and typically developing fetus?

Where do rights end and entitlements begin?

When it comes to pregnancies and Down syndrome, there seems to be a worldview that can't be denied. As I have previously written about, Iceland has a 100% abortion rate when a fetus is prenatally diagnosed with Down syndrome. 100%!

Other statistics also show the majority of women will choose termination of the pregnancy when Down syndrome is diagnosed. I have read many reasons that women give for this decision:
-They believe a child with Down syndrome would not enjoy their life.
-They believe they would not be capable of taking care of a child with special needs.
-The woman feels there is a stigma associated with being a parent/family of a child with special needs.
-Doctors encourage the women that they can easily try again.
-The women believe their child's life span will be shortened.
-The women have great fears about their child's future and possible complications.
-They believe they will be raising this child for the rest of their lives.
-The condition is not reversible and the severity of problems cannot be predicted.
-They believe it is the best thing for their child.
-They believe that raising this child would be too costly.

Beyond termination rates, there seems to be increasing pressures around the world to not judge those who choose termination and accept the individual's choice in the matter. In November of last year, France banned a telecast of a short video called "Dear Future Mom," which showed people with Down syndrome leading happy and productive lives. The Council of State declared the video “inappropriate” for television broadcast because it is “likely to disturb the conscience of women who had lawfully made different personal life choices,” i.e., those who had aborted their babies with Down syndrome. An article on the Huffington Post recently reported that the Netherlands Minister of Health had this to say in regards to Non Invasive Prenatal Testing that will be available to all pregnant women there, “If freedom of choice results in a situation that nearly no children with Down syndrome are being born, society should accept that.”

No ma'am. I will not accept that.

As I have read through many stories on increasing abortion rates in countries who mandate prenatal screenings, I am left with one question.

What are women entitled to?

And that question sparks other questions:

Are women entitled to healthy babies?
When a woman decides to get pregnant, should that mother acknowledge that there is a certain amount of "risk" involved?
Doesn't parenting any child involve challenges and risks?
Is an abortion really merciful if you take away any chance the child had at life?
Should women determine if a diagnosis warrants a death sentence?
How is the proposed worth of life being determined?
Are women who hold strong convictions about equality committing discrimination against their own children when they choose termination?

I realize that these are not easy questions and generate a wide variety of answers.

I do believe though that EVERY fetus has a right to life. That is a right that should not be denied. The idea that should change is a woman's entitlement to a healthy child. That should not be a guarantee because it is unnatural to expect perfection.

When I was pregnant with my first child, I never feared having a child with any problems. I did not want prenatal testing because I wasn't going to terminate no matter the outcome. (That was still true for the pregnancy with my son later.) However, I never thought disability in any form would happen to my child.

When my daughter was born with Down syndrome and heart defects, I did have to work through many emotions and thoughts I had in my life about justice and fairness. I learned just how selfish my heart was. I felt I deserved a healthy child because I was a good person and a person of faith. When my expectation did not match up to reality, I had to come to understand some flawed ideas in my personal worldview.

Through my experience with my daughter, I understood that no one is guaranteed perfection in life. I had no control over the gender of the baby or its physical development. When I became pregnant, there were a million different things that could have went wrong (or right) with my baby. Down syndrome was something that could have happened to anyone's pregnancy, but it occurred with mine. There are no guarantees in life. I was never entitled to a perfect, healthy baby even though the odds were in my favor.

Here's something that my husband and I want you to know:

It is much more compassionate to give your life in service to another human being than to never give that person an opportunity to exist.

Don't be afraid of a diagnosis. Don't be afraid of the life you will lead. You are stronger than you think. Your capacity to love will be greater than you dreamt. You might not have imagined this life for yourself or your child but it does not mean it will be a disappointment.

Therapy Tip: Using Snow for Language

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a mother of a child with special needs and a pediatric speech-language pathologist.

Today's Tips is:

Using Snow for Building Language

Snow is something I use to enjoy as a child. As an adult, I don't appreciate it as much. Living in the Midwest here in America, we have a few snowfalls a year. Snow brings an opportunity for an activity that isn't available all the time.

I started bringing snow inside the house in a container when Jaycee was a toddler. Jaycee has only went outside and playfully dug in the snow a handful of times. Her lung issues make it difficult for her to breathe in the cold air. Therefore, we generally enjoy the snow inside the house where it is safer.

As I have mentioned in some of my other posts, building language can be done is almost every activity. Snow play is just another method to target language while simply playing or guiding a child. I think the activity is always more interesting for the child too when it is something relatively new or unique for them.

Here's what you need:

-A container 1/2 full of fresh snow

-A towel to place under the container for drips if needed

-Measuring cups, small cups, spoons, scoops, and other small items that allow the child to dig and move the snow around

-Food coloring if you are going to change the color of the snow

-Mittens/gloves if the child won't touch the snow

Some possible language targets for toddlers and pre-school students:

-Concepts: In/out, empty/full

-Adjectives: White, cold, wet

-Action words: Scoop, dig, dump, pour, fill

-Other vocabulary: Snow, winter, gloves, cup, spoon

-2 Word Phrases: White snow, cold hand, fill it, dump out, more snow

Hope your next snow day is fun and language filled!

Therapy Thursday is for educational purposes and not intended as therapeutic advice.

Getting the Medicine of Music

"Hey Jaycee here's your very own song of love..."

When the song's opening comes through my van's speakers, my daughter gets very happy. She knows this is HER song. As it plays, she gestures, attempts to sing along, and dances to the catchy song that is all about her.

How did she get this song of her very own?

This song came from the Songs of Love Foundation, a group that provides free songs for children and teens facing medical, physical, or emotional challenges. Each song is unique for each child, with no song ever being duplicated.

We received this song on CD over a year ago, but it's still exciting for Jaycee to hear. Through our visit to Give Kids the World via Make-A-Wish, we learned about this foundation and decided this would be perfect for Jaycee.

To receive the song, I filled out a simple form describing Jaycee and her health conditions. It also asked for information that could possibly go in the song. I wondered what song would be created from Jaycee's nickname "Sissy" and her interests in swinging, swimming, Barney the Dinosaur, her cousin Gabby, and hugging.

After a short wait time, we received a CD with Jaycee's song that amazingly made all of her interests work together. It was so sweet! Here's a portion of the lyric sheet:

The foundation website says that they provide the medicine of music, and it's an accurate description. My daughter spends 40 minutes every day sitting through airway clearance and approximately 30 minutes on a nebulizer each day. You can easily double those times if she has any respiratory symptom or cold. She spends each night on a bi-pap machine, which is something she has needed since age 3. Jaycee has a very good and full life, but there are machines and medicines she must have daily to stay healthy. That is what makes organizations like Songs of Love so special because they are dedicated to reaching out to people like my daughter who miss out on many typical things due to accommodations needed for her diagnoses.

Prior to our wish experience, I had never heard of this charity. I'm guessing that many of you haven't heard about it either. They are always seeking kids who qualify to receive this free gift of music as well as donations to keep the songs going out to kids who need them.

For more information on this organization or to make a referral, please visit their website.

Therapy Tip: Winter Sensory Bin

Welcome to Therapy Thursday! This is the day 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:

Winter Sensory Bin

Sensory bins are a fun and popular activity for young children. Sensory bins are simply containers filled with an item meant to provide some sort of texture to the child as they dig and feel around while playing. Other items are placed in the bin based upon the fine motor skills that are being targeted or vocabulary that is being addressed.


Working in homes of toddlers, I try to make up small sensory bins several times a year. Traveling from home to home, I pack a shoebox sized container for my sensory bin. This container is just the right size for one small child to play in and is easy for me transport. I generally don't fill the container completely full since some of the toddlers I work with will end up dumping out the contents.

This is an example of a winter sensory bin I do.

The base of the bin is simple cotton balls. These cotton balls provide a soft texture for the toddlers. After they dig around, I will usually rub the cotton balls on the child's hands and face too.

Here are some of the objects I put inside it.

For my winter sensory bin, I chose to focus on the color white, so that dictated what objects I put into the bin. Besides the cotton balls, I have a couple of white cups (plastic and Dixie), a couple of rabbits, a spider ring, white/black tiger, a cow, and an ice cream and egg from a play food set. Sometimes, I include items like white Styrofoam balls, white pipe cleaners, or white measuring cups. Generally, I use things laying around my home so that families can somewhat replicate my bin if they choose.

Using the items from my sensory bin described above, I can easily target many language skills. These include:

-Actions words: Dump, scoop, eat, drink

-Adjectives: White, soft, full, empty

-2 word phrases: White spider, Put in, Dump out, Hop bunny

-Vocabulary: Bunny, spider, ice cream, etc.

To work on these skills, I just play along side of the toddler as we dig through the bin. It's that simple!

The most important thing about any sensory bin is to find something that will meaningfully engage the child you are working with. I hope this gives you an idea for creating your own.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

When People Say My Daughter's Down Syndrome Needs Healed

A small replication error causing three copies of chromosome 21 is the definition of Down syndrome in it's simplest form. The fact that this happened to my daughter Jaycee was completely random. It was no one's fault.

But, Down syndrome and it's medical definition is not a good enough explanation for many people. Over the years, many well meaning people have offered me the deeper reason why my child has Down syndrome. Some of these include:

-God gives children with special needs to special people.

-God blesses people with children with special needs who can handle it.

-God makes so many people with Down syndrome, and He choose you to receive one.

-God does not want anyone to struggle therefore, she needs prayer for healing.

-A demon, sin, or generational curse brought this upon your child, so you need to repent/pray.

I understand why people have offered me this information over the years. I too have looked for deeper meanings in the big and small things that have happened in my life. I even searched for the deeper meaning when Jaycee was born.

I struggled with how to pray for Jaycee initially as I tried to understand why my daughter was born with a disability.

At first, I felt it was my duty to pray for her to be healed completely or at the very least have Down syndrome with minimal effects. But, I started to not like those prayers. I felt that those prayers were selling my daughter short. I felt my prayers were only focusing on what was wrong with her and how she needed to be "more like everyone else." Did God view her as imperfect as my prayers seemed to suggest?

Here were some questions I had as I muddled through the subject of disability, God, and Christianity:
-Is the presence of disability the absence of God or is it something else?
-Can a person with a disability serve and love God?
-Can God accept a person with a disability? 
-If everyone should be healed, why didn't God heal Moses of his speech impediment instead of appointing Aaron to be his "mouth?" (Genesis 4)  Could I be Jaycee's Aaron?

I want to make it clear that I believe in healing, prayer, and miracles. I believe all people with big and small ailments need prayer and benefit from prayer. However, I do believe people in the church can show a lack of acceptance of those with disabilities when they only interact with people with disabilities to pray for healing. This post isn't necessarily about the topic of healing but how to approach those with disabilities in the church.

Let me tell you a personal story.

Some time back, I decided I was going to start and host a small group in our church. My group was going to be for parents of children with a diagnosis. I wasn't sure if there were even any other families in my church that were like mine besides the one family I was already acquainted with.

One Sunday was declared the small group sign up day. I stood by a table near my sign up sheet hoping and waiting for other parents to come and sign up. After a few minutes, someone approached me that I was only slightly familiar with at church. The person asked me how my daughter was doing. After my response, she went on to say she is still praying and believing for my daughter to be healed of her Down syndrome and encouraged me to keep believing for that too.

I was taken aback. I smiled and probably told her thanks, but inside I was screaming. There I was hoping to meet and support other parents in a similar journey. Instead, I was reminded just how some Christians view my child, as someone who is incomplete without healing.

I stood there another minute or two and then joined my husband who was waiting for me in the van with the children. He was surprised to see me so soon, since I told him I would be at my table for awhile. I had to get out of there. I started crying as I recounted the story to him.

It may not seem like a big deal to you. Perhaps, you think that person did nothing wrong. They didn't really. But their approach was what upset me. The only topic of Jaycee was her Down syndrome and her need of healing. Period. Jaycee is more than her diagnosis. I have to battle this is the real world all the time, and I don't want to have this battle at church too.

The miracle of 2013

After that experience, I prayed about what happened. I asked God how I could respond to people who only want to talk about Jaycee in terms of needing healing.

You see, I don't feel like God sees Jaycee's Down syndrome as such a huge problem that we do. Jaycee has not been healed of Down syndrome, but she has received healing and grace in her life during her many illnesses and hospital admissions. She was literally on the brink of death once in 2013 when she was maxed out on support on the ventilator. I truly believe that God heard our many prayers for Jaycee during that time and is the reason she is still here.

I know that God works through her even if His healing power isn't manifesting the way everyone would expect it.

Because of all of this, I decided that future people who want to pray Jaycee's Down syndrome away will be reminded of this one thing from me:

Jaycee's body isn't perfect, but her spirit is.

I believe Jaycee's spirit is God's main concern since that is what will join Him in heaven. In that regard, she is way ahead of us in living a life that is Godly. I am not opposed to people praying for Jaycee. But, I do hope they want to get to know her, appreciate her for where she's at, and acknowledge the ways God has worked in her life.

Related Post: Does God Make Down syndrome? 

Therapy Tip: I'm Worried About My Toddler's Language

Welcome to Therapy Thursday! Today is the day I share a tip based upon my experience as a mother of a child with special needs and a pediatric speech-language pathologist.

Today's tip is:

I'm Worried About My Toddler's Language. Now what?

For the past 10 years in my career, I have worked primarily in my state's early intervention program. This means the majority of my work has focused on providing speech-language intervention to children under age 3. Most of these children are two when I evaluate them as part of a team that decides if delays are present and/or warrant therapy. By the time I am coming to the home to talk to the parents and evaluate the child's language, most parents have had concerns for some time.

So when DO you know it's time to get your child evaluated? When do you wait and see if they will start talking on their own?

Today, I hope to help you answer these questions.

Consult Developmental Information
First, there are many, many websites that can give you information on typical speech and language development for babies and toddlers. It is important to know what is typical to decide if your child is behind. Sometimes, parents will see another child their child's age who is saying and doing more. Just because one child has more skills, doesn't mean your child is "behind." That's why the developmental norms are so important.

Here are two websites with some of this information:
ASHA's Speech-Language Development Information

Developmental Information from the Child Development Institute

Information presented in these websites are good reference points for concerned parents. These are just some of the things that a speech-language pathologist will look at when determining whether a child has a language delay or not. Parents are usually surprised by the number of questions or skills I look for even in a young 18 month old child. The number of words the child has is just 1 factor in assessing their overall language development.

If your child is not meeting some of the skills listed on developmental checklists that you have looked at, then consider a full evaluation from a speech-language pathologist.

Medical/Developmental Information to Consider
Maybe you looked at the developmental information, and you are left confused. You can read so many websites that you may be getting mixed opinions about your child. So, let's move on. If you are concerned about your child's language development but aren't sure if you should have an evaluation now or wait, then consider the factors below.

-Does your child already have a diagnosis that would put them at risk for a language delay?
-Does your child have a history of multiple ear infections or fluid in the ears? Has your child received ear tubes or being considered for tubes?
-Is there a family history of educational, speech-language, hearing, or developmental issues? This may included siblings or parents that needed special services.
-Is your child behind in meeting other milestones? Did your child sit up or crawl late, for example?

If you answer yes to any of these and have concerns with your child's language, then consider getting an evaluation.

More Specific Red Flags to Consider
Besides the developmental and medical history, I often look for these red flags when I am first evaluating a toddler. Each of these would be considered a red flag that would constitute a full evaluation from a speech-language pathologist.

-Was your child quiet as a baby with little to no babbling?
-Has your toddler ever had consistent words or skills that he/she no longer does?
-Has your child's eating ever caused you stress due to gagging or texture aversions?
-Does your child seem to ignore you when you call their name almost every time?
-Are gestures absent? (No waving, no pointing)
-Does your child play with toys in an usual manner? (I.E. spinning car wheels only on cars or simply holding small objects instead of playing with them)
-Does your child seem to ignore other people or children?

If you answered "yes" to any question above, then have your child's language evaluated by a professional. This does not mean that your child is definitely having a delay, this just means that I would not recommend a wait and see approach with these children.

Who should "wait and see" what happens?
If the above information did not alert you to anything new, then I am fine with some parents using a wait and see approach. However, give yourself a timeline to make a decision. For example, if no improvements have been made in __ amount of time, then I will call someone or talk to my child's doctor.

I do want to stress that getting your child evaluated is important if you have ANY concerns. It will decrease your stress, give you answers, and allow your child to get proper treatment if appropriate. Even if your child is tested and a delay is found, you may or may not want to start speech therapy right away. But, hopefully the professionals will empower you to make the best choice for your child.

I have evaluated children who follow directions very well, use many different gestures (even making up their own), communicate well non-verbally, seem to understand everything they are told, but just aren't saying many words. Sometimes, these parents choose to give their child time to improve without any intervention. I usually support the parents but give them a time limit (3 months) to see if their child can improve with just some parent training and parent led intervention at home.

The Bottom Line
If you are worried, just make that call for an evaluation, talk to your doctor, or give yourself a time frame to make a decision. An evaluation should give you the information you need to help your child and answer any questions you have. Getting an evaluation will not "label" your child for life. Speech-language pathologists are here to help you and your family!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 

The Good, Bad, and In-Between of Holiday Break

Happy New Year! I hope you had a great time over the holidays.

If you are like me, you make grandiose plans for breaks. "We'll have special family time," I declared with hope prior to break.

"We'll make great memories. We'll laugh. Nothing can stop our fun! Nothing!"

Then poof. A cough. Gasp!

If you have been a long time reader, you know that a cough and a cold is not simple with Jaycee's lung conditions and heart history.

Jaycee with her new doll

Jaycee's cough went to wet and junky sounding within the first 48 hours of break starting. That meant breathing treatments every few hours followed by airway clearance. Alarms from the monitor went off at night. Dirty sheets from unspeakable horrors were waiting for me several mornings. Two trips to the doctor were required, and one call to the pulmonary doctor was made. Christmas gatherings and plans had to be adjusted for the girl who needed to be close to her machines and emergency medicines. Everything during break was planned around her medicine schedule.

Yep, none of that was fun, but I'm thankful she recovered at home.


On the bright side, my husband and I did manage to go on a date since my mother volunteered to watch our children. We had a respectable grown-up dinner, but I did miss coloring while waiting for our food to arrive. We watched a movie and awkwardly sat next to each other. Usually, we sit Jaycee between us in case she gets scared during the movie. We hadn't sat next to each other in a theater in so long, but we had settled into each other's company before the 20 minutes of previews ended. A date night was exactly what we needed after the week we had. We enjoyed what was our 2nd or 3rd date of the year. (We aren't exactly role models for dating in marriage.)

I did love sleeping in past 6 am during break even if I was getting up in the middle of the night because Jaycee was alarming.

It was also great to watch a few movies at night with my husband after the kids went to bed. God bless you Sully and your awesome water landing skills!

Elijah playing his new tiny piano

Jaycee and I were thrilled to watch Beauty and the Beast three times. I helped Elijah with a Minecraft Lego set and received a great deal of information regarding Steve, Ender Dragons, and other things that I still can't comprehend.



So, everything didn't go as planned, but we still made memories. We still had quality family time. We had moments of fun and laughter amidst the illness and stress.



Several years ago, a pastor who is now in Heaven preached that he never had a bad day, but sometimes had bad things come up. Every day God gave him was good no matter what happened. He believed this even when he battled health issues that ultimately ended his life. His philosophy on life still challenges me.

Some not so great things happened over break, but I won't be calling it "bad."

The kids jamming with Jaycee's new tambourine

We are all still here and got to be together. That sounds great, doesn't it?