Let's Talk Tuesday - Our Apraxia Story

'Let's Talk Tuesday' is a bi-weekly post series with ideas on how you can help your child of any ability, but especially those with Apraxia, Autism, speech disorders or late talkers.  These are meant to be simple ways to encourage speech.  I am not a speech therapist, but I am a mom of an Apraxic child, I am just sharing these ideas in hopes that they will help someone else.  

If you have a story or an idea that you would like to share, please email me at [email protected].

Welcome to our first Let's Talk Tuesday!  In the future on our Let's Talk Tuesday Series, I'll post different ideas on tips you can do with your child (of any ability) at home to encourage speech & language development.  Today though, I thought a good place to start (with our first LTT post) would be to share our story of Apraxia with you.  It may not seem like much, but to us it's been an emotional journey & one that is close to our hearts.  

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My first daughter, Paige, was born with no major problems.  She was born at 38 weeks & only 5lbs 8oz.  She was incredibly tiny, but healthy.  We were thrilled!

As she got a bit older we noticed her eye lid's didn't seem to work normally & her actual eye opening was extra small.  After 3 surgeries on her eyes between the ages of 11 months & 15 months, her eyes were corrected as much as possible for the time being.  Before her surgeries, she was starting to say a couple of words... words only I could understand, but they were there.  After her surgeries, she stopped saying those words.  It was really odd to us.  Right around the time we were realizing this was a concern of ours, a study came out that basically said kids under the age of 2 that have more than 1 surgery are more likely to have speech problems down the road.  

My mommy gut told me that we needed to get some professional help.  I asked around to see what my options were & the main one that came up was Early Intervention.  I contacted a few until I found our local Early Intervention program & scheduled an appointment.  They came to my house & did the evaluation.  We started working with them, & they were great.  Paige was improving (slowly, but we were thrilled with each hurdle nonetheless).  At every doctor appointment, Paige's speech was a concern, which would then lead us to another doctor appointment with another specialist.  I think in that year we went to doctor appointments on average 3 times a month.  It was a journey. 

After about a year of working with them, one of Paige's speech therapist mentioned that Paige might have something called Apraxia.  Honestly, I had no idea what that meant & it went in one ear and out the other.  Seriously, she said it & I heard it, but I didn't register it.

One Sunday evening (a moment I will never forget), we were all in the car on our way home from Rick's grandma's house.  Earlier that day, Paige had learned how to say "Ma Ma"... I was so excited.  At 19 months she finally could say what every mom wants to hear!  Needless to say, it was a great day.  As we were driving home that night, we talked about what we were going to do to get ready for bed when we got home.  Paige then said... or rather, tried to say, "ba ba" (for bottle), but it came out as "ma ma".  It was evident what she was trying to say, but she couldn't say her "b" sounds all of a sudden.  She looked confused & tried over and over to say it.  She started to cry because she knew this was something she had worked so hard on mastering & that she could say it before.  At that moment I knew there was more to her "speech delay" than just the anesthesia she had  over a year earlier.  My husband worked with Paige to calm her down while I turned around & cried.  I didn't want her to see me crying, I needed to be strong for her, but at that moment I wasn't.  I just wanted to pull over, scoop her up & hug her while we both cried.  Just typing out this moment still makes me cry.   

The next morning I was still emotional about it, which gave me my mamma bear fire.  I was going to find out what is really wrong with Paige's speech & what we could do to help her,  I was on a mission for my baby.  I searched online, but didn't find anything.  I left messages for her speech therapist & her pediatrician first thing in the morning to see if they could point me in the right direction.  By lunch time they had both called me & they both mentioned that word again... Apraxia.  It wasn't just a word any more.  This time it meant more.  Not that I wasn't worried about Paige before, but I just didn't understand it the first time, I guess.  My mission was progressing, I looked online for anything I could find for Apraxia & I spoke more with her speech therapist at our next appointment.    

I was told that Apraxia usually cannot be officially diagnosed until the child is 3 years old & at that time Paige was 2.  Our Early Intervention speech therapist suggested we get a second opinion from a private speech therapist.  After lots of research, I found a speech therapist very close to us who specialized in Apraxia & she pre-diagnosed Paige with it.  Basically saying if she was old enough, she would be diagnosed with it, but since she wasn't quite there yet, we'll say she has about a 95% chance of having it.  it's amazing that after searching for about 12 long months, we finally found something that fit.  Something that, even though it's not easy, it's right & we had a direction to go now.  

It took Paige 6 long months & countless hours of practicing before she could say the "b" sound again, and even to this day she still struggles with it more often than not.

Just the other day Paige was officially diagnosed with Apraxia (since she is 3 now) & Dyspraxia.  The more I learn about Apraxia, the more confident I am of this diagnosis for Paige. But also, the more I learn about Apraxia & with each day that passes, the more I realize how serious Apraxia is.  

Paige on the first ever Apraxia Awareness Day

Childhood Apraxia of Speech (CAS) is considered a neurological speech disorder (or sometimes a motor planning disorder) that affects the child's ability to clearly and correctly produce syllables and words.  The most obvious thing that others notice is that the child has significantly limited and/or unclear speech.  (source)

Apraxia is something that affects our daily lives.  Although I can usually understand what Paige is trying to say (by picking out a word or two of her explanations), it takes a lot of energy to listen so intently to her all day long, and no doubt it takes much more energy on her part to try to coordinate her brain & what she wants to say with her mouth.  Most people have a much harder time understanding her, of course.  Sometimes I don't know if I should be happy or sad for her because she's come so far & done so well, but she still has such a long way to go.  

Paige is amazing, though!  She has been very patient with herself & with others through this whole process.  She has also worked so much harder than I would ever expect a 3 year old to work on something, especially something that seems as simple as speech.  She's always been positive about it & rarely gets frustrated.

Paige at Hippotherapy (speech therapy on horses)

Even though Paige is in speech therapy, I do my best to have little mini speech therapy sessions between the two of us so she can have that extra little boost of help.  All of our sweet kids (of all abilities) have so much they want to say to us, so that's why I am starting Let's Talk Tuesdays, so we can have give our kids every opportunity possible for them to have the tools they need to express themselves.  As parents we can make the biggest impact for our kids, so it's important for us to make every effort possible to encourage our kids.  

For more information about Apraxia, click here.

I'd LOVE to hear your speech journey or speech tips that have worked with your kids.  Comment with them below or email me at [email protected]

The Best Staycation for Family Fun - Guest Post

Today, we welcome Michele from the Mommy Blogger Directory as our guest blogger.

With the economy at a stand still, more and more people are choosing to forgo their summer vacations. As a mom, I know how family vacations can be expensive so I am constantly seeking out new ways to entertain at home. Doing things together at home can create a fun bonding experience with the family, but it can also save lots of money!

There are many different ways to spend a vacation at home. Staycations do not have to spent indoors, watching movies, and playing games. My family and I have created an annual staycation that is incredibly fun and also inexpensive: camping! While we do not have a glamorous backyard space or fancy camping equipment, we've managed to put together a fun-filled camping staycation!

Camping does not require all the latest and greatest tents, sleeping bags, and camping tools. I managed to peruse yard sales and Craigslist to find all the camping essentials including a tent and sleeping bags which we set up right in our backyard. We used our firepit for roasting hot dogs and then for smores each night. To make things a little extra special, I hung lanterns around the backyard. I purchased them at a dollar store but they were great for our camping staycation. 

We spent the weekend camping out in our backyard and the total cost was less than $100 and fortunately i just used my debit card. The camping equipment was an initial expense but considering we will be having this camping staycation annually, we consider the expense an investment. Although my kids were a bit apprehensive about our staycation, they had a really good time. I was surprised when they asked if we could do it every year!

Organize a Service Project...with your kids!

So many people talk about how to organize different community service projects, and maybe they even give you good ideas, but do they explain how to do it WITH your kids? 

I find it very important to include my daughters in service (even at their super young ages).  I want to teach them how happy it can make them & others.  I want to teach them to give back to others.  I want to teach them to forget about themselves & to put other's needs first.    BUT, I don't want to always be the one who plans the service projects & drags my kids around.  I know that if I include them in the planning, they'll be more excited to serve.

I also love to plan events.  In fact, being an event planner is on my top 3 dream jobs.  So, I combined these 2 passions to share with you how to go about organizing a community service project (of any kind!)... WITH your kids.

1.  Define the need
(the who & what)

If you are wanting to organize some sort of community service project, you'll need to decide what is needed & who to give it to.  It doesn't necessarily have to be in that order, it can be who to help & then figure out what help they need.  For example, if you are doing a Back To School Drive, like Brittanie, you'll need to contact different agencies & ask them what their biggest needs are currently.

If you are doing this with your children, tell them about 3 or so different agencies, or needs/cause & then you can let them chose which they feel the most connected to.  If they have a choice in the matter (and a story to tie with it), they'll be a lot more excited about helping.

2.  Decide on your time commitment & availability
(large scale or small scale)

You'll need to decide how much time you & your child have to dedicate to this cause.  Depending on what you decide, this service project can be something that you & your children do together in one day, or you can invite those in your mommy play group to help, or you can make it a full blown, city/state/nation-wide event that takes a couple of months to plan. 

3.  Organize the details
(dates, location, budget, etc.)

Who can participate?

I'm all about including your kids in service projects (in case you haven't noticed...), but don't forget that there are some projects that have certain age requirements.  For example, I know of an awesome non-profit in Northern Utah called Resolution Horse Company, but they can only accept limited help of those under the age of 18.  Be sure to talk to the organization about the ages of those who will be involved so that there is no confusion & you can make the most of every minute serving.

With that said, most service projects welcome help from children of all ages as long as they have an adult with them.

4.  Make goals

Children love to make & reach goals.  Just be sure the goals are very realistic especially considering the time you have available to dedicate to this project.  There doesn't even have to be a reward if they meet their goal.  If you make goals related to your service project WITH your child, once again, they'll be more excited about this project.  If you don't meet your goals, be sure to still make it a positive experience for your child by reminding them how much they helped so & so, or how many people this affected.

5.  Get the word out
Publicize, publicize, publicize!  

Possibly the easiest way to get the word out now-a-days is through social media.  (thank you, social media!)

•  Let everyone know about your event via your fb or twitter pages & ask people to help spread the word for you! 
• Create a FB Event
• Contact Local Bloggers & ask them to post about your event on their blog or fb page (hint, hint... you can ask me!  In fact, I have a spot on my right side bar reserved just for advertising service projects!)
•  Have your children pass out fliers in their neighborhood, at local churches. 
• Ask a local business to get involved (who would say no to a kid!?) (hang up a flier there, leave some by cash registers, or ask them if they'd like to donate or sponsor the event)
• Leave fliers at a grocery store or at a library
• Call a local radio station & ask them to announce the event or invite them to the event. 
• Enlist help from churches, youth groups, service organizations, mom's groups, family etc.
• Email everyone in your address book.  Your child can write it (or help write it).  Email is also a very low pressure way to ask for help for those of you who are not quite as bold.

6. The Day Of

Be sure to be on time, prepared & organized.  If possible or if needed, bring supplies like water or donuts to thank your volunteers.  This is not necessary of course, but it would sure bring a smile to my face!  Do remember to think about the kids that will be helping & if they will have any extra needs.  Then you're off to sort & deliver the products with a smile :)

7. Don't Forget!

Write thank you cards.  I think this is often the most overlooked step, though often the most important.  It can be something as simple as a piece of paper that you can hand to them the day of.  I personally think that handwritten & mailed thank you cards are so much more meaningful, but to be honest, anything is better than nothing.  At least sign some sort of thank you card & don't forget to have your child sign them, too. 

(nothing is better than little kid handwriting or a picture they drew... besides, it will give your child some great penmanship practice writing their name)

If you need some cute cards, check out one of my favorite sites, Tiny Prints.  I've ordered many thank you cards from many different places, but I love the uniqueness, quality & ease of Tiny Prints. 

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So many people think in the back of their mind that just because they aren't currently part of an organization, they can't plan a service project, but guess what... YOU CAN!  And there are so many things (big & little) that you can do with your children to teach them to help & love others.  In many of my upcoming posts, I'll take (what for me is) the hard part out of doing this with your kids.... coming up with ideas!  I have several projects lined up that I am excited to share with you & I hope they get you & your kids more excited to get out & serve.

Now let's get some ideas brainstorming... comment below on some service projects you have done (or want to do) with your kids!

Wordless Wednesday #1

The Big Breast Feeding Debate

There's an online movement going on right now called "I Support You", which is calling for support of mothers, however they chose to feed their babies.  It's being done to raise awareness & acceptance of each mothers' choice of how they feed their babies.

I'd like to share my own feeding stories with you & will be linking up here and here.  I'd love to hear your non-judgmental stories by linking up, too!  If you don't wish to share your story on your blog to link up, feel free to share your story in my comment section below, I'd love to hear them!

I have 2 daughters & our feeding stories for both have been very opposite.  

When Paige was born, my husband & I decided I would breastfeed her.  It wasn't something I ever thought much about, it's just what I knew.  I wasn't one of those "breast is best" kind of extreme advocates, but I knew it was a good option for many reasons.

Breastfeeding was something I had to learn (especially since she was my first baby) as well as let her learn.  I honestly felt very "new" at this breastfeeding thing.  I had several lactation consultants (LC) help us in the hospital, but they kept saying that Paige wasn't latching on.  Once I got home, she still wasn't latching on yet.  I remember getting home from the hospital & just crying because I couldn't even feed my own baby.  That's what my body was made to do, so why wasn't it working for us?  (thank you post-natal hormones!)

My mom helped me gather up the car seat, the diaper bag & my new tiny baby.  We went for several more visits with the LC.  Paige never ended up latching on.  It was a very emotional thing for me.  Each feeding I felt like I was fighting her, even though I knew it was time for her to eat.  We experimented in as many ways as we could think of, but nothing seemed to help.

After 6 very long weeks of fighting her to eat every 3 hours (give or take), I dried up.  I texted some moms who had been there, done that to get their advice.  I got a wide range of advice.  I had a few moms tell me "breast is best & to keep trying to feed her."I had one mom tell me, "take the herb Fenugreek, it will bring your milk back in."  I appreciated the advice I got, but nothing seemed to feel right for us.  I still was at a loss.  The most meaningful answer, though, was when another mom dropped everything to come & see me right when she got the text.  It was one of my (two) mothers-in-law.  She told me that she totally understood & that it was okay if I decided to formula feed my baby.  She had been in similar situations & felt guilty for not nursing at times, but that it all worked out in the end.  She knew the confusion & battle I was having in my head, but she reassured me that no matter what happened, we would know what to do & neither decision would make me a "bad mom".  I was so grateful for her acceptance of whatever I chose.  

After talking to my husband, we decided that since feeding Paige was so difficult still maybe we should embrace this "happening" & start bottle feeding.  Once we did, Paige was an even happier baby & feeding her was a happy experience for me (something I waited 6 long, sleepless weeks for).  A couple of short years later, we found out that Paige had a motor disorder called Apraxia.  When a child has Apraxia, they know how they want to move their body (especially their mouth), but their brain has a hard time telling their body exactly how to move.  Not all children with Apraxia have problems feeding as babies, but many do.  I was amazed once I found out this was why she would not ever latch on, even after working with Lactation Consultants for so long.  I was also so relieved that we decided to stop breast feeding her because I now knew that it wasn't right for her.  If we had continued, it would have been a battle for 12 very long months & I am so glad I had more time to cuddle with her when she was happily eating.  I feel like if I would have continued, it could have caused us to have more tension in our relationship or possibly even unhealthy eating habits for her.

My sweet parents feeding Paige at about 4 months old.
I can't seem to find one of me feeding her.
Photo taken by Carlye Morgan Photography.

When I got pregnant with my second daughter, I was more nervous about breastfeeding her than the actual labor & delivery.  Luckily, though, my story with Lindsey has been simple.  She has been able to breastfeed easily.  I did dry up at 6 weeks with her, too, but this time we felt like continuing would be ideal for her & our family if possible.  I took the herb called Fenugreek & got my milk back.

Can you tell what she prefers?  :)

Because of my experiences on both sides of the coin, I know that each mom knows what is best for their baby & their family (because, yes, it affects everyone else, too!).

I've breastfed & bottle fed & I support you, however you feed your baby.  Go mom!

What's your feeding story?  Share it with me below!