The One About Apraxia: Where We Are Now

This post is inspired by this post by one of my favorite bloggers.  For Paige's full apraxia story in one post, click here.

Paige is now done with Hippotherapy (speech therapy on horses) for the summer.  It was so much fun for her & I noticed it helping her in many ways.  Even if the actual therapy session didn't help her, just how much she loved telling people about it would have helped more than I could have expected.  I loved watching her, too.  I'm so grateful to the people at Resolution Horse Co. that provided that free service & for a friend online telling me about it.  It came at a time that she & I both really needed it.

Because of it's high cost, Paige has gone without speech therapy since January (besides her horse therapy).  She gets some speech therapy in preschool, which I am so grateful for, but it's so minimal compared to the help that she really needs because of the seriousness of Apraxia.   For months I felt so guilty that I didn't have her in therapy.  I saw on an Apraxia Facebook group that many of the parents were taking the summer off for speech therapy.  That gave me a little feeling of relief that Paige was just "taking a break".  Rick & I came across a little bit of money & found a cheaper (& it appears just as good) speech therapist in our area to work with Paige.  The speech therapist has been referred to as the "Apraxia Whisperer" to me by someone I know.  We are excited to be working with her.

Paige was previously "pre-diagnosed" with Apraxia when she was 2 because most speech therapists say you can't officially diagnose them until they are about 3.  At Paige's first appointment with her new speech therapist, the speech therapist did an initial evaluation.  I was slightly nervous for the results, even though she had been pre-diagnosed.  

After she worked with Paige, she told me that she would consider Paige someone with a "classic Apraxia" case.  I asked her how severe she thought it was & she said it was right in the middle of extreme & mild.  I always assumed it was more on the mild side.  

She also said that Paige does have some dyspraxia, which is basically Apraxia for her whole body (as far as I understand it right now...).

I don't know why, but I was surprised at the relief I felt (which I also felt with her pre-diagnosis, only this time I knew more of what Apraxia is).  Although Paige has a long & rough road ahead of her, I'm so glad we have this officially diagnosed & that we have someone working with her again... for now.

Below is a video I took a couple of weeks ago (before we found the books I talk about below) of Paige reading Harold & the Purple Crayon.

Thanks to someone on an Apraxia FB group, we learned about these awesome Speech Box books.  I got them from the library & we instantly noticed a huge difference in her speech.  It was such a big difference that we bought the whole set.  Reading them is now a part of her night time chores she does each night with Rick.

I love that we are seeing improvement in Paige & that other people are noticing it, too.  I'm so proud of her.  She often says things that surprise me & it makes me smile.  At this point, Paige basically tries to say anything & everything.  She loves to repeat us & it's been fun to hear her do that.  This is a huge advantage for her.  Occasionally she'll get sad when I can't understand what she's trying to say, so when that happens we'll stop, say a prayer asking for help understanding each other & then I always instantly know what she's saying.  It's been a kind of fun & neat tradition that we've started.  Even though this journey has been hard, it's been special to us in a way I don't think I could ever explain.  It's our story... & no one else's.  It's one we care about & one our emotions are all tangled up in.

For those of you who don't know, Apraxia is basically a disconnect from Paige's brain to her body (but mostly her mouth).  It is exhausting for us as parents trying to help her & to encourage her to speak all day every day, but I can't even imagine how exhausting it must be for her!

Like I've said before, Paige is a trooper.  She's amazing.  She's always been so patient with herself & others with this trial she has been given.  She's handled it with such a great attitude & she's for sure taught me more than I ever expected to learn from a 3 year old.  I love her so much for that.  

The One With June's Friday Photo Dump

Did you know that June is the best month ever???  Here are a few reasons why we loved this year's June...

This month started with one of the best weekends I've had in a long time.  

Part of what made it so much fun was going wedding dress shopping with one of my cousins on her birthday.  It was so fun to spend time with these 3 amazing ladies!  I honestly don't remember anything else I did that weekend, I just remember thinking the whole weekend that it was such a good one.

A few days later we went to visit Rick at work (downtown) again.  

Do you see those men clear up on the temple?!?

Paige started Horse Therapy this month.  

It's a free service done by Resolution Horse Company.  It's been so awesome for her, she loves it & she loves talking about it just as much.  It's so pretty there & I love to watch her.  It's been fun for both of us.  She rides on ponies named Dixie & Hope.  Just the other day they started working on 's' sounds (as per my request) and she's already been improving (in less than 48 hours! Go Paige!).  

Lindsey turned 6 months old this month!  

She's had quite the month.  She's rolling everywhere & so close to crawling it's not even funny.  Okay, okay... it's a little bit funny when she lunges forward while she's on all fours, but don't tell her I said that!  She's also learned how to get into the sitting position all by herself.

I think she's officially started teething.  She's had a few fussy days lately, runny nose, and she's also started nursing... well, differently.  :)  I can't see or feel anything in there yet, so hopefully they come soon so she can get it over with!

She also just started fake coughing & playing copy cat games with it.  I love it.

She started eating baby cereal & she seems to love it.  I think she knows it's a big girl thing...

Sometimes she even attacks the spoon before I can even get it in her mouth.  Now that's funny!

She started sleeping on her stomach (and for some reason I think it's adorable)...

She put a hole in both toes of some rather new pjs... ???

We took her swinging for her first time (she loved it & Paige loved pushing her... is that a bad sign or good sign??)...

Oh yeah, and we busted out her swimming suits a couple of times.  Once in our make-shift pool... (you likey?) and once in a real pool (Thanks Barbie!) where Paige was even kind of jumping in the pool... that's big for her!

My brother also made it into town.  I love having him & his family here.  

One of his sons decided to be baptized up here with my other nephew.  It was a really neat experience & of course so much fun to be with my family.

While he was here we also all went on a family vacation.

We went to another one of my brother's cabin up at Flaming Gorge.  Most everyone was able to float down the Green River.  Paige & Rick went & Paige fell asleep by the end of the 2 hour ride.  I don't know how Rick paddled one handed while holding her!  Z & I stayed back so that we could meet everyone at the end.  I wasn't about to risk being stuck on a raft with a 6 month old in a life jacket.  No sir.  

While we were at Flaming Gorge, we celebrated my birthday.  It was so neat to celebrate it with my whole family!  Everyone (including all of the little kids) wrote me the cutest cards & Rick took me out to dinner.  Oh yeah... and I got a nap!  :)  

We also had a lot of fun this month goofing around...

Dressing up...

Playing with our new baby that can go in the bath... 

Reading...

And my personal favorite... cuddling!!

Oh yeah, and we also enjoyed going to lots of family parties, spending LOTS of time with our extended family, and living it up in the sun before it gets too hot.  I love June!  

See??  How can you not agree that June is the best month?  

(unless you are Rick & are a little obsessed with football... :))

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*Update* After I posted this, Lindsey started to crawl!  Wahoo!!!

The One Where It's Apraxia Awareness Day

Today is the first ever Apraxia Awareness Day.

For those of you who don't know what Apraxia is, I'll simplify it as best as I can... It's a neurological speech disorder where she knows what she wants to say, but her brain has a hard time making her body (especially her mouth) move in the correct way.  Therefore, it makes it hard for her to communicate verbally.  

If I were to read that for the first time, I might think, 'oh, that's sad...' or maybe, 'that would be really hard...' and not much else.  

But it's more than that.  

Some people think, 'oh, she's just a late talker'.  

But it's more than that.

Apraxia affects her whole life & the lives of those around her.  It makes it really hard for her to talk to other kids her age at school, people at the grocery store, her grandparents, and even her own parents.  Because of this, it will be harder for her to make friends at school (not to mention she will be 'different' than the other kids).  

This likely affects her in many other ways.  Often Apraxia makes it hard for kids to do basic things like tying their shoes, or writing, or playing sports or even something as simple as eating.  

This is not a pity party, though... 

Because Paige is amazing.  Paige is one of the hardest workers I know (even at the age of 3!).  Paige is a silly, happy girl who loves normal kid things.  She loves shoes, playing outside, reading books, princesses and ice cream.  Other kids who struggle with communicating might get very frustrated & throw lots of tantrums because they can't communicate.  Not Paige, though.  She's always been a very happy person & has a great temperament.    She's very patient with herself & with those around her who are trying to understand her.  She is progressing each day and more than expected, and I am so grateful for that!  Although, I work all day with her, Rick works every night with her & he has helped her so much.  

She combines 'words' like it's nobody's business (a big deal for anyone with Apraxia) & she is a chatterbox at home.  She uses more approximations than I can count, and even though other people can't understand them (and I can only understand some of them), I am so proud of her for getting to where she is today.  

The Apraxia community is raising awareness for many reasons.  One of the main reasons, though, is because children with Apraxia need speech therapy often for several years.  This can be very expensive (our personal SLP was costing us $90 per visit while she needed at least 2 visits per week... needless to say, we can't afford that), but insurance often does not cover it, and if it does, it will only cover a couple of month's worth.  If we raise awareness, we can encourage insurance companies to cover this appropriately.  Of course there are many other reasons we'd love to raise awareness.  

Our children with Apraxia all seem to be amazing & dealing with their challenges in amazing ways.  I wish that Paige didn't have to go through it, but since she does, I'm so proud to be her mom & to be able to learn from her.  She's amazing.  I'll say it again... I'm so proud to be her mom.

For more information on Apraxia, please visit http://www.apraxia-kids.org/

*I hope I am using the affect & effect in the proper way!  :)

The One With April & May's Craft Line Up

As I mentioned in my last post, we've been creating a lot more than usual.  It's been fun & some things were helpful, so I thought I would post about it.

We made a doll house out of card board for Paige's smaller toys. Thanks to a similar idea from Pinterest.

It's not quite as pretty as the pinterest version, but we had fun making it together, so that's all that matters, right?

I felt like Paige was wanting to watch tv more than I would like (thanks to her getting sick), so I decided it was time for an intervention... well an intervention of sorts :)  I was ready to teach her some responsibility & some work ethic (as much as you can teach a 3 year old), so I decided she was old enough for a chore chart.  

I saw this idea & decided to tweak it a bit.  I used a larger paper & Velcro (because that's what I had on hand).  I used the chore images from this cute idea.  I debated on doing the latter (and still might one day), but I thought this one would work a bit better for now.  Her chores are: go potty, brush her teeth, eat breakfast, get dressed & read scriptures.  It's rough being a 3 year old... :)

We do our "chores" first thing in the morning then she can play &/or watch a little bit of tv.  She really loves it.  She goes to get her chore chart every morning (without me mentioning it) & then she tells me which order we are going to do things.  She really loves closing each one as she finishes it.  

*a word to the wise:  after a while, this chart will get pretty worn out.  I was considering laminating it, but didn't think that would work well with the folds, so I just reinforced the folds with tape on the inside and outside.  It's worked well.

Along those same lines, I wanted to encourage her to want to help more (instead of just wanting to watch tv), so I made a helper chart.  I put pictures of different Disney movies where they are helping to clean.  She gets a sticker every time she helps & she loves it.  I even let her pick between watching tv & helping with dishes or laundry occasionally & she often chooses to help me.

You're welcome to download it here.

In preschool, they are working on name recognition, so when I saw this idea, I had to jump on it.  It's basically like a puzzle of her name & she matches it.  I laminated it & used the Velcro again.  She's awesome at it, but it's still fun for her.

I also saw this idea, and loved it, so I tweaked it a bit & made my own.  It's a binder with some dry erase crayons (in a pencil case) with some pages I printed off (info below) on card stock for her to trace.  

Apraxia can make it really hard for kids to write (their brain has a hard time telling their body what to do even though they want it), so I decided to use it to help her learn to write (especially her name).  Since I made this last month, I've noticed a difference in her drawing, too... it's not just scribbles anymore, so I guess this has paid off!  

I made some pages that had pictures of each person in our family, with their name written below a few times so she could practice writing all of our names.  I just used Word & copied & pasted some custom handwriting work sheets.  I think it was this one, if I remember correctly.

It also allows me... ahem, Paige to use her creativity...

A: Name & First Letter Page Trace found here

B: LDS Church & General Conference Pages found here

C: Hidden Pictures found here

D: Trace-able Pictures & Shapes found here

I will also be adding this one to the book soon & will continually be adding more as she gets older.

I also made some sign language thank you cards to give (tied to their bananas to give to the people who joined us for the 2013 Apraxia Walk).  On the front was a picture of Paige saying thank you in sign language (her hand moved in that way & on the back it said 'Thanks! Love, Paige' in traceable writing so Paige could practice writing her name.  

I kind of loved how they turned out & I'm nervous for how I'm going to top them for next year!  They may or may not have been a big hit.  :)  Good thing I have a whole year to figure it out.

For mother's day & teacher appreciation day, I decided to have Paige do a little something for her preschool teachers & for some of her grandmas.  Of course my idea stemmed from yet another idea on pinterest, but as usual, I tweaked it a bit for us.

I just wrote some prompts, asked Paige what she wanted to fill in, then I wrote it for her.  So far the teachers have loved it & I am sure the grandmas will, too.

Paige also learned how to write her P's all by herself & on the Mother's Day cards for her first time, too!  I can't think of a better time to learn.  :)  She's got pretty great timing.  I'm super proud of her & I guess some of the activities above have been working!  

PS - I linked up here, here, here, here, here & here.  :)

The One With April's Friday Photo Dump

Another month has come & gone!  Thank heaven that we can take pictures on our cell phones (even if they aren't the best quality) so we can capture more memories!  

This month started with Rick's 30th birthday.  We had a few fun little celebrations & Paige even got in on helping Rick celebrate...

We also got a bunch of new books this month, so we had fun reading them all!

Paige & Lindsey officially had their first bath together (I can call this officially, right?)

& they had a lot of fun playing together.  It's so fun to see them interact more every day.  Oh, and Z has almost mastered sitting up!

Speaking of Lindsey, she's 4 months old now!  

 

We of course had Paige's Apraxia Walk (Thanks again to everyone who showed support in one way or another!)

I took the girls on Trax to visit daddy at work & have lunch with him.  That was a pretty big accomplishment for me :)  I'm glad we did it, though.  It was lots of fun.

As usual we enjoyed watching for daddy to come home from work, but this time we had a helper!

My trusty, dusty old Kitchen Aid died on me the other day... but then it was... resurrected?  Well, I guess that's not the right word because it still isn't perfected yet :)  But it came back to life for now.  Thank heaven, I use that thing multiple times each week.  Rick bought it at a yard sale when we were barely married for $25 ... steal?  I think so!

Rick started playing flag football again, and luckily the weather was perfect!

We "crafted" quite a bit this month, too, but we can post about that another time.  

And here's one more for the road... can you spot Lindsey?

(Paige piled all of her dolls on top of Z & me one day, it was kind of hard to tell which one was the real baby!)