Guest Posts Wanted for DS Awareness Month

It's almost here!!! Hooray!!

What is almost here?

Down syndrome Awareness Month-coming in October!

The National Down syndrome Society (NDSS) calls for October to be a month of celebration of abilities and accomplishments of those with Down syndrome.

During the month of October, I participate in the 31 for 21 challenge--blogging 31 days in October for Trisomy 21 awareness. Keeping the NDSS's position in mind, last year I had several guest posts for a series I called "I Can." The posts featured a story about someone with Down syndrome that was meaningful to the family or highlighted the person's abilities. I had a few parents share about their child, one child with Down syndrome share something, and even a sibling. These posts were quite popular last year!

This year, I would like to feature more stories of people with Down syndrome during October celebrating their lives, interests, achievements, abilities, and personalities. Want to join me? Write a post about your loved one, email it to me, and then it may appear here during October. I will also share it on my social media accounts.

Here's what I'd like:

Theme: The post should share accomplishments, abilities, interests, or personalities of someone with DS. You can send me something outside of this if you have a different idea, but I may choose not to run with it.

Content: New or old content is welcomed. If you are a blogger and have a post you have published on your own site, you may send it my way for a reposting.

Word Count: No set number for this. Most of the posts were pretty short last year, but length is up to you.

Deadline to join in: I need all writings by September 25th. Only one post will be shared each day, so there are only 31 spots for posts available. I will let you know the date your post will be featured by September 30th at the latest.

Ready, write, and send:
-Please send your written post via email to evanasandy@gmail.com. You can type your post in the body of the email or send it as a Word attachment.
-Please, please, please send a picture with it that can be attached to your post.
-If you are a blogger, feel free to link back to your blog and/or write up a bio of you/your family.
-I may edit your piece for length or clarity. Curse words will be omitted.

Here are some examples from last year:

Meet Nate: I Can...

Meet Benjamin: I Can...

Meet My Brother

Meet Sophie: I Can...


Click HERE for the NDSS statement on Down syndrome Awareness month.

I can't wait to see the guest posts!!!

Mom Prob: I Need a BFF

This is embarrassing to write.

I am a grown up woman who is going to whine about how I don't have a best friend.

It's a true statement though no matter how embarrassing. There is a hole in my life where a best friend should be. I feel it most whenever I am going through some struggles in life or a health crisis with my daughter.

Sure, I have a husband. But, we are usually stressed at the same time when there is a child health issue. He is a great listener, but there is a limit to the whines and concerns he can hear from me without losing his mind. Sometimes, I pick up the phone to call someone who has a female brain, but there's no one I can think of that has the time to listen to me.

That's when a thought pops in my head, "I have no friends."

Me with all my close friends : )

But, that's not accurate. I have numerous FaceBook friends who read about my adventures with my daughter and give likes or crying faces when appropriate or write a comment. This makes me feel connected to many people, but it's not enough.

I have a great mom and a few close family members who call or message me during hard times. I need these people in my life offering prayers, encouragement, and assistance in various forms.

I do have a handful of female friends who check on my family, come to my kids' birthday parties, and possibly have dinner with my family a time or two a year. I consider these girls in my inner circle. They understand my life more than most and love my children. We talk about getting together for some girl time, but we never do. Every mom is busy and has a family to take care of first. But not spending time together without kids present really makes it hard to develop a closer friend relationship.

I even have two female friends I have met with 1-2 times a year in person by ourselves for some well deserved female time without children. Amanda will answer a text from me at 5 am. How great is she? Tricia will respond to my very long messages and doesn't judge me when I say I'm struggling. She gets me, and I need her. These two girls are the people who I can count on in a pinch for prayers or encouragement. I hope I do the same for them too. But I doubt Amanda or Tricia would consider me their best friend. I've never been Tricia's house. I don't even know Amanda's favorite color. That's got to be a BFF requirement, right?

See, I DO have friends. But I don't have a female Best Friend.

Part of this is my fault. I have always been the person who just kept 1 or 2 friends in my inner circle. I was never the girl who spent her weekends with a large group of people. I always felt good about just having a friend or two until that friend was sick or missed school. Then I was alone.

After Jaycee was born, I made more mistakes in acquiring and keeping friends. I isolated myself for the first few years of her life. I missed weddings, baby showers, parties, and special events. Sometimes, I was guarding Jaycee from germs. Sometimes, I was avoiding all the social contact. Try socializing with people and making small talk while your child went through two open heart surgeries and needed intensive care at home. Small talk and complaints about mundane things is exhausting and meaningless when your child has been fighting for their life. Even now, this is still true at times for me.

Still, I have made mistakes. I have closed myself away from people. I have hesitated to reach out to people when I have needed to talk to someone. I haven't talked about the things on my heart because I didn't want to burden anyone. Some of my problems with Jaycee are just too much for some people to handle or at least I think they are. Some of my thoughts are just so unrelated to most people; I keep them inside wishing there was someone to release them to.

Perhaps, one day I'll have a female best friend. We'll have lunch. We'll cry. We'll laugh and have inside jokes. We'll buy each other birthday presents. We'll go Christmas shopping together. We'll have babysitters that can keep our kids. Our plans will never be broken because of a sick child. We'll see each other's homes. We'll know each other's favorite colors. It will be awesome!

Until then, I'll be thankful for my caring and patient husband. I'll treasure my mom, my aunt, and the other family members that are close by my side. I'll be thankful for the friends I do have, even if I wish we had more time to develop closer friendships. I'll be thankful for my kids who give me plenty of reasons to smile, and a God that hears my deepest cries when there's no one to talk to.

Therapy Tip: Making the Most of School Speech Therapy

Therapy Thursday is back!! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and the mother of a child with special needs. Today's tip is important for parents who have children in speech therapy in the school:

Making the Most of Speech Therapy Sessions During the School Year

It's that time of year when school is starting back. If you have a child with an IEP who will be receiving speech therapy this school year, then you need to know how to maximize your child's therapy. Speech therapy from the school is an important part of a child's education, since the child must be exhibiting some sort of delay or problem to receive it.

Although parents are part of the IEP team and planning process, parents are often left out of the day-to-day business that actually happens to work on the fulfillment of the IEP goals. Hopefully, your child's speech-language pathologist (SLP) keeps you informed of your child's progress, current targets, and allows times for conversations. If not, here's how you can make the most of it:

1. First, update the SLP. If something significant happened this summer to your child that could impact therapy, please let your child's SLP know. If your child had teeth pulled, ear infections, ear tubes placed, a tonsillectomy, hearing evaluations, or anything else dealing with the mouth/nose/ears, then please share this information with your child's SLP. This is information the SLP would want to know.

2. Find out what your child is working on in therapy. This information should be in your child's IEP. If you have lost it, you can ask for another copy. You need to know what your child is working on, so that you can help your child at home.

3. Find out when your child will receive therapy. SLPs have different ways of scheduling sessions, but I am guessing most SLPs have a set time that your child is penciled in for every week. You can ask your child's SLP if they are receiving speech therapy on a certain day/time. If you know when your child receives therapy, then you can try to avoid scheduling appointments during days that would result in missing school/therapy. The SLP may have a very full caseload and may not be able to make up the session if your child misses school that particular day.

4. Ask for updates. I hope your child's SLP is sending 'homework' practice or other notes home periodically (at least once a quarter) to let you know what your child is currently working on in sessions. If not, you can ask the SLP for updates. If you do request updates, please keep one thing in mind. The SLP is very busy and most likely has a large number of children on her caseload. The SLP is probably unable to check in with you every week or every session. When I say, feel free to ask for updates, please be reasonable. You can ask for an update every few weeks, every month, or every quarter so that you can stay in the loop. You may offer to do this in emails, texts, or a notebook that can be passed between the two of you.

5. Reinforce speech goals during homework. There are many ways to work on a target skill in reading, spelling, or other subjects. This is especially true if your child is working on fluency for stuttering treatment or a specific speech sound (i.e. /r/). If you are unsure of how to support your child's progress at home, then ask your SLP. Reinforcement at home is key to getting your child to progress faster. If you aren't involved in your child's treatment in some small way at home, then there is a missing element that needs to be addressed.


I hope your child's speech therapy will be beneficial this year, and that you and the SLP can work together to achieve those goals. Have a great school year!

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

Bored? Here Ya Go

During my blogging pause, I didn't stop writing completely.

Here are some links to pieces I wrote elsewhere. So if you're bored, here's something to click on and read. 



Wait! Summer Break Don't Go I haven't had enough time for fun this summer. Or have I?


God, Hospitals Make Me Angry I have a hard time being a Christian in the hospital. True story.


Me and My Terrible, Ungrateful Thoughts Sometimes I want a vacation from ALL of it.


Reading Your Bible Again? Thoughts on how we can show children we are committed to God.

Who Was I This Summer Break?

Welcome back!

The summer blog pause is over, and I'm back to writing.

Summer break this year was (pause.....think of an adjective) unique.

Many things happened in the two months I have been away from the blog. Some of these intense events were planned, which is why I took a break. I'm not a writer who typically writes about current events in my life that are serious. I need time to process and emotionally work through them. 

There were times this summer when I sat back and asked, "Who am I?"

Seriously. Who was I?

Well, I seemed to be:

A sweet kiss in the hospital

-A Nurse: Being Jaycee's nurse is not a new role for me. I dose out medications and run her medical equipment daily. However, Jaycee had a fairly big surgery at the end of June to make space in her airway to treat her severe sleep apnea. We were told her recovery could be 3-10 days. It took 25 days for Jaycee to make a full recovery! Twenty-five days is long, by the way, when you are trying to give pain medications several times a day to a child who does not want to take extra medications and counting every ounce the child drinks. Not to mention, Jaycee had 2 different post-surgery bleeds that resulted in 2 additional hospital stays during this 25 day recovery. I'll write more on this subject another day, but my mommy nursing skills were challenged this summer!

-A Travelor: My family took two mini-vacations. We fulfilled my son's dream to visit our state capital (Springfield, IL) and enjoyed a three day history lesson. Well, my son and I enjoyed it. My daughter and husband maybe not as much. Our second little trip was to visit my family in Indiana. Family visits may seem boring, but my extended family is super fun. We had lots of laughs. My son got to see another state capital too, so he was in Heaven! We didn't travel far or have a large budget, but I did get to travel somewhere. I was thankful to be anywhere besides a hospital!

Jaycee at Lincoln's tomb with some assistance with Daddy

-A Mom of a Princess: My sweet little girl participated in a pageant for people with intellectual disabilities for the second time in her life. We loved watching Jaycee perform on stage and getting all dolled up. She absolutely loves it too! (You can read about last year's pageant here.) I like being the mom of a princess, and it's a memory we will treasure! 

Post Pageant picture with the family

-A Mom of another Child with a Diagnosis...AGAIN!: Most of my writings have been regarding my daughter's health issues and diagnoses. My other child, Elijah, has had (what I have always considered) minor issues with his motor skills and muscles. In June, it was confirmed that his issues won't be something that he will outgrow as he was diagnosed with a connective tissue disorder called Ehlers-Danlos syndrome. I'll write more on this subject another time, but I had some emotional issues to work through when I discovered that both of my children had life long diagnoses.

-Someone who Struggled: There were some happy times this summer. But, the hard times were hard. During Jaycee's time in the hospital, I struggled with anger. No really, I wanted to slap a few staff who I didn't feel were treating my daughter properly or professionally. How do you walk into a room and not know what surgery a kid just had? And how does that happen more than once? There were very frustrating moments during Jaycee's longer than expected recovery. It was stressful on my husband and I, and we didn't get a break for three weeks. In a crisis, I have this tendency to want to throw a pity party when things aren't going well. Those parties spiral me down into despair farther, which isn't helpful at all. Anyway, I struggled some this summer. But, now that some time has passed, I am feeling more optimistic and almost back to my normal self.


Well, that was me in a nutshell during my blogging pause. It feels good to be blogging again and back to my normal regular self. I'm ready to share some experiences and thoughts with you every week again.



See you on Thursdays for Therapy Thursday, my weekly tip on a therapy related subject. Tuesdays is my general blogging day on parenting and my life. As always, thanks for reading!

Hitting the Pause Button

Have you ever looked at your calendar and wanted to cry or scream and something in-between?

That's how I feel right now. The kids are home for the next couple of months for summer break, which always makes life busy and fun. There are mini-vacations planned that I'm looking forward to taking. There are doctor's appointments and a surgery that I'm not looking forward to at all.

And so, I am taking a little summer break from this blog to spend more time with my family and not worry about updating the blog.

In the mean time, I'll do some short posts on my blog's Facebook page. So, be sure to check that out.

You can also find me on Twitter here for 140 characters worth of reading.


Drop back in during the month of August when I expect to be up and writing again.

Therapy Tip: Taking your Child with Special Needs to Church

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:

Keys for Taking your Child with Special Needs to Church

When your child has special needs, certain places just aren't easy for a variety of reasons. Church is often one place that parents are hesitant about or have had difficulties with in the past.

One hindrance for church attendance and our children is that there is little support. This is not a dig at churches; it is a reality. At school, our kids have educational plans, special support systems in place, therapists, and possibly individual aides. At home, we parents have mastered our children's strengths. We also know their triggers and how to help them regulate themselves when they are upset.

Then there's church. If you are like me and attend a church where your child is "dropped off" in a classroom away from you, it can be very scary at first. But, I can tell you that having a child with special needs attend church is possible.

That being said, every child is different. Every church is also different. It may take make trial runs. It may take many weeks and months, but I am optimistic that there is some church in your area that is willing to work with you to help your child.

Here's some keys to help make church a place where your child can succeed.

First, give some notice.
If you are starting a new church or class, it might be wise to call ahead and speak to someone in the youth ministry. You might feel strange doing this but hopefully the church contact will be courteous and listen to your concerns. If a church has no experience with special needs, I wouldn't let that stop you from trying it out. All you need to find is people who are willing to listen and serve your child.

When we started a new church when Jaycee was 5 years old, we kept her in sanctuary with us for several weeks. She did well in the adult church, so thankfully that was an option for us. When we decided we would be staying at the church, I approached the children's church teacher at the time to let her know Jaycee would be joining their class. We chatted for a few minutes about Jaycee's needs, and she was ready for her the next week.

Jaycee (middle) praying with children at Bible School

Offer help to the leaders.
You know your child well. You can offer great advice and insight into your child to help them succeed. Most of the people working in youth ministry are volunteers. Few have special education training. You can't expect them to understand your child's diagnosis or what to do. But, you can help these people understand your child so that the time in church can be peaceful for them and your child. Give church staff ideas on things that calm your child or things that will trigger problems with your child.

When my daughter moved up to a new class in our established church, I had reservations about her adjustment to it. The first Sunday she was in the new class, I offered to sit with her and a volunteer who would be her helper for the next few weeks. As class proceeded, I told the lady what her mannerisms meant, when she was happy, and when things were bothering her. It was one Sunday that I gave up to give Jaycee the best shot for the next few weeks. It worked.

Another thing we did when she switched classes was to create a "Tips for Jaycee" sheet. Because there were different volunteers on Sundays and Wednesdays, we made a one page paper of basics to help the volunteers know and understand Jaycee. Some things on it were: Jaycee needs to be reminded to use the bathroom, Jaycee loves dancing and music, If Jaycee sits on the floor between the seats that means she's scared, etc. This helped all of the volunteers feel comfortable when interacting with Jaycee, who was nonverbal at the time.

Prepare your child.
If there is something that helps your child do well at school or in other situations, then use it to your advantage at church. If your child responds to social stories, then make one to explain what happens in class. If your child thrives on schedules, create a schedule of what happens in class so that they will know what to do. If they are anxious about when class will be over, come up with a way to help decrease the anxiety.

If someone at the church can't provide and make these things, then find other resources. If you can make them on your own, then offer to do this. If you have no way of making visuals or schedules for your child, then ask a friend, teacher, therapist, etc. Beg them if you need to.

Jaycee in front of the stage dancing to songs at church

Be patient.
Change often takes adjustment. This is true for everyone involved. It may take the church staff a few encounters to learn your child and know how to respond in different situations. If your child only makes it through half of class and needs to leave, don't give up. Brainstorm with the leaders and be willing to help. Be patient with leaders who are trying to work with your child while taking care of other children in the class.

Offer suggestions, not demands.
Many people in the children's ministry are volunteers. They are giving up their time and energy to serve your child and many others. Even though I have discussed things like schedules and visuals, please don't demand the church make these. Offer suggestions and ways to help. Suggestions are most likely better received in any place, even church.

Sometimes, there is a debate on what class a child should be placed in. One person wants the child in the class that is for their age/grade. Another person may want the child in the class that is based more on their developmental abilities. Again, I think you need to discuss your concerns, ask questions, and give your input. Placing a child based on chronological age or developmental age is a case-by-case decision. I think there are many factors to consider with this, and there is no right or wrong placement. Just be willing to try out different classrooms or visit them for yourself in order to help decide what may be best. If you are demanding that your child be in a certain classroom, then you may need to sit and discuss with the church leaders why your opinions are different and get their side of the story. Hopefully, they are willing to do the same with you.



Taking your child with special needs to church doesn't have to be stressful and difficult. There may be some bumps in the road. You may have to do some work to figure out what will help your child, but I pray you will find things that will indeed help. I hope you will find a church full of people willing to work with your family to see your child grow in God.

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