apraxia: one year later.

a little over a year ago...

payton was diagnosed with childhood apraxia of speech.

i cried.

i pouted.

i screamed that it is not fair.

i had a bit of a poor me moment.

and i moved on.

because baby girl needed me to move on.

she needed me to put a plan into place.

a plan that would hopefully one day allow her to be understood.

by us.

by her peers.

by anyone that she comes into contact with.

and so i do as only i know how to do.

and i butted it in the head.

full force.

for the past year...

we have gone to private therapy four times a week.

yeah... momma is a wee bit burnt out.

mondays and wednesdays.

private therapy with a PROMPT trained therapist.

we drive 45 minutes each way to see her.

our God send.

tuesdays and thursday.

private therapy.

ST. OT. PT.

among speech therapy she gets at school.

some will argue that less is more.

sorry, but i do not agree.

 i wholeheartedly believe...

that payton is where she is today...

because of the consistent, intense therapy we have done.

and we still have so far to go.

but baby...

we have come so far.

here is payton repeating an apraxia word list one year ago.

and here she is repeating that same word list now.

there are so many of these words she can now say more clearly.

she can put more of those consonant and vowel sounds together.

apraxia is a motor planning disorder.

there are several consonant and vowel combinations she still cannot do.

and there are some words where she still drops the final sound.

like the -se in please.

or the -t in eat.

or...

she tries so hard to get that final sound...

that she brings it to the beginning of the word.

i am so freakin proud of her.

and my heart seriously breaks as i watch her try to talk.

she wants so badly to be able to say what she wants to say.

but she literally cannot.

the wires do not meet and the only thing we can do it continue to try.

and we will not stop.

not until this baby girl of ours can say everything she wants to say.

because isn't that what she deserves?

and here she is a year ago repeating my unofficial word list.

and today...

the same unofficial list.

The drama that is Payton.

This chick seriously cracks me up.

Drama, attention, drama, attention.

Five years ago...

as I sat in a hospital room crying my eyes out...

"We think your baby girl has Down syndrome."

I was not really sure if she would ever be smart enough to play me.

Ohh boy... was I ever mistaken.

This chick has it down...

perfected, actually.

Ohh... she cracks me up.

Sisters = Love.

Since Payton was born, I have blessed to meet so many amazing people... many of whom are now my closest friends. When we were in process to adopt Nika... I met Charissa online. At the time, she and her husband were in process to adopt Ava... a little girl with Down syndrome from Ukraine.

I think the thing that struck me most about Charissa was that she did not have a biological child with Down syndrome. And at first... things were not how she imagined they would be when she first met Ava. I remember sitting in front of my computer and just crying over her words and her fear... just praying that she could see past the orphan. And did she ever... she embraced Ava and loved her and brought her home.

Last week... I finally got to meet Charissa, Ava and the rest of their family... which now includes two additional children that they adopted. They rock.

Some of the crew... it was hard to wrangle 10 kids at once.

I will never forget reading these words from Charissa's husband... John... with regard to their adoption of Ava...

When Charissa came to me and asked me, "Can we adopt a little girl with Down Syndrome?" I didn't say anything. I just thought.

Then she said, "... there is a little girl in Ukraine that needs a family." I didn't say anything except.. mmmm.

I began to go over and over in my mind how MY life would change. How would this affect ME. What if this happened what if that happened. How would this little girl integrate into our family?

So, here is a list of questions I asked, prayed over and meditated on for several days:
- This is a huge commitment
- Will she talk, eat, walk
- What will Word of Faith folks think of me having a child with a disability
- How will my life change with this little girl
- Will my kids accept her
- Will my kids rebel
- Will my kids be safe while I am half way across the world
- Can I afford this
- and many other thoughts

Then I had this thought.. What is this little girl thinking:
- When is my daddy going to come kiss my neck and throw me in the air?
- When is my daddy going to come help me get my eyes fixed?
- When is my daddy going to help me learn how to eat, walk, talk?
- When is my daddy going to take me out of this crib and put me on his shoulders?
- When is my daddy going to hold me close at night before he puts me to bed?
- When is my daddy going to tell me he loves me?
- When is my daddy coming to get me? Why's he taking so long? I'm ready!

God defends the orphan! He will defend me and my family..

What a blessing little Ava has been in my life! I just cannot imagine life without that little girl. Jesus will increase your ability to love every child you bring into your home. He'll work miracles in your heart and in the hearts of a whole lot of other folks too.

Don't be afraid to LOVE! Love heals.



::

Speaking of people I have met over the past several years... and when I say met... I often mean met online... as um, weird as that sounds. Ha. Anyway... I just got home from the Juice Plus+ conference in California... and while I was there... I was able to meet up with some amazing mommas.

Some of our awesome team... Kristen, Linda, Debby, yours truly, Mandy, Rachel... MIA Kristin

After conference... Linda and I got to crash Ella's birthday party and meet some more awesome mommas... Cheri, Heather, Stephanie, Cammie and so many more. I forgot my camera, so I got nothing to show. Boo.

Then... Linda and I drove to Los Angeles for a couple days. That was interesting... and so much fun. We toured the city in the torrential downpour like teenagers... sadly we did not see anyone famous, which of course was our main goal. Yes... teenagers, I know. Ha... but it was so fun.

Kodak Theater, Hollywood sign behind the fog, Rodeo Drive

We were able to meet up with Darlena for lunch at Universal Studios City Walk in the torrential downpour... love her. Seriously... what up with the massive storms slamming SoCal the one time in my life I am there?

The shadows in this place were not nice to me.

And then... we got to have dinner at this little French bistro that Linda seriously loved loved loved with more Down syndrome momma friends... they are all such awesome girls and could quite possibly allow me to consider moving to California. Ha.

Kristin, Linda, yours truly, Cheri, Jen, Brenda

::

I really hate traveling without my babies... the older I get, the worse it gets. It seriously makes me anxious. I was so happy to see them when I got home.



Love me some lip puckers.



Nika is getting it down... sideways and all.









Hmm... what is that bubble doing hanging on there?



I could kiss those little lips all.day.long.



Sisters = Love.

Love that chick.

Payton is by far the pickiest eater in our house... behavioral as it may be. Her speech therapist spends about 15 minutes of each session working with her on eating different textures... and trying to do so without gagging. She has a very sensitive gag reflex... and if she had it her way... her diet would consist of the following...

• pizza
• chicken nuggets
• french fries
• yogurt
• chips

She will eat other things like spaghetti, chicken quesadillas, oranges and such... she just prefers not to. And thank goodness she does not make her own meal choices. I swear her eating could easily become a battle... but I try to be patient with her. I cannot imagine that she prefers to gag when eating a variety of foods. Chew, chew, chew is a common phrase at mealtime.

Sigh.



I get on these little kicks where I decide that I will not accommodate her behavioral meal choices anymore... and give her what the rest of the family is having. Because I know she can eat it... she just would rather have chips. And sometimes... when I don't feel like fighting the fight... I do make her a separate meal.

A few nights ago I used my menu planner and made chicken parmesan for dinner... with a side of corn. And I sat there with Payton until she ate every last bite of her chicken and at least a few bites of her corn. She gagged all the way through it and I chanted... chew, chew, chew. Her technique was less than desirable... chewing her chicken at the front of her mouth, likely secretly hoping it would just fall out. I nipped that in the bud... but now I am questioning myself.

Payton woke up in the middle of the night vomiting up her entire dinner. Like... several times. Did she have a bug? If she did, no wonder she didn't want to eat. Or was it her less than desirable chewing and swallowing technique of this food that she had no desire to eat? I am afraid maybe the food never made it completely down her esophagus.

Hopefully it was just a bug.

Even though she seemed to be feeling fine... I kept her home from school and took her in to be swabbed for strep. Negative. Days like that are some of my favorite times spent with my kids. Lazy day around the house... just the one child and I. 



Taking care of them... being a momma. Snuggling in bed for afternoon nap.



Payton... close your eyes and pretend you are sleeping.



Haha... love that chick.

::

I received the identification bracelets I ordered for the girls in the mail the other day. There has been a lot of discussion about what information the bracelets should actually contain.

Bracelets ordered from here.

On a whim after the great Barbie jeep escape... I ordered them with name, address and the cell phone numbers of both Kyle and I. After thinking it through and getting feedback from a few police officer friends... I think I need to order another set of bracelets with just our phone numbers on them.



And while I would love to have the girls wear these bracelets every minute of every day... I am not sure it is really feasible. I am just not sure... I am struggling with this. And the bracelets obviously will only go so far to help if the girls did end up missing... depending on the situation and whether or not they are found by the right person. That said... I am glad to have them for times when we go on vacation or to an amusement park... and other places of the like.

Meanwhile... I spoke with a Deputy Sheriff friend of ours about the Project Lifesaver. Unfortunately... our county has a waiting list due to budget restraints. So... this is not an option for us right now. We could get our own bracelets... but I am still on the fence... and I am not sure why. I don't know... I just want my girls to lead their lives as normal as possible... but at what point does it become too late? I do think... however... that I will be getting this for those times that we need it.

Decisions, decisions.

::

We are knee deep in all things IEP, FAPE, IDEA, ESY, LRE, PLOP*... and so on. We have Payton's kindergarten eligibility meeting in two weeks... and I am anxious, to say the least.

I have consented to the psychological testing for Payton and I am not sure if that was the right thing to do. I am feeling at peace with the decision... right this moment... but in five minutes I could read something that will change my mind. The outcome of this testing will determine her label... she will lose her DD* label... and I am okay with that... as long as it does not affect the services she will receive.

I could go on and on... but I won't since the end result is all that matters and I will update on that once we are there. If you are a parent or teacher or anyone else that is involved in inclusion of a child with Down syndrome... please feel free to join a new group that I created on facebook. We are up to 326 members nationally... well, even internationally... and there is a ton of great information.

IEP = Individualized Education Program
FAPE = Free Appropriate Public Education
IDEA = Individuals with Disabilities Education Act
ESY = Extended School Year
LRE = Least Restrictive Environment
PLOP = Present Level of Performance
DD = Developmentally Delayed

::

Headed to California later this week for the national Juice Plus+ conference... so excited. The conferences are always so inspiring... and they remind me why Juice Plus+ is such an integral part of our health.

We are also having a DS mommas meet up at City Walk while I am there... email me if you want to join us!

What I envision...

I love my life.

I am sitting here... in the midst of my family... cracking up hysterically while watching them play hide-and-seek. One, two, three, four... ready or not, here I come! I believe the rules of the game have officially been changed... that, and the quirks of young children (namely: Chicky) playing hide-and-seek... well, it is one of those moments that makes you want to pick up your kids and smooch them til the cows come home.

• Chicky counting... A, B, C, D... and turning me to ask, "Momma, where Daddy? Maymay? Where do?" (pronounced dough)
• Chicky seems to think that you are supposed to hide in the same place every.time.you.hide. Under the covers or behind a curtain... every.time... all the while thinking she is being just as tricky as the first time she hid there.
• When Chicky is hiding... and she hears the ready or not holler... she giggles. Hysterically. And she greets the seeker from her hiding place... "Hi Daddy!" Doesn't make for hard finding... but most certainly makes for lots of heart swells. 

::

One of my guilty little pleasures is oggling (is that a word?) over crafty, home design blogs. Some people are so freakin talented. I love crafty, do-it-yourself type projects... but I usually need to pull inspiration from somewhere.

I have a problem with meals. I mean... I have great intentions... I buy all the ingredients... but then let them go to waste in my pantry. Our days are busy and dinner time often becomes a grab-what-you-can meal... rather than that of a good home cooked meal. What I envision in my head is... "Please pass the potatoes. How was your day, dear? Don't forget to eat your vegetable. What happened at school today?"

Yeahhh ... haha.

But now... now is the time, dammit. I was scrolling through a blog that I follow... crafty girl... mom of a little boy with autism... we talk therapy... we talk IEPs... we talk inclusion... love that. And I came across a menu planner board... seriously the answer to my problems. 

So I made me one.



Got me a cheap little framed cork board from Michaels... don't forget to use a coupon --> cheap. Picked up some scrapbook paper and found these little clothesline clips at Walmart --> freakin cute.



Bought me a can of brown spray paint... sprayed and rusticized (ok... that really is not a word) the frame, the clothesline clips and the thumb tacks. Found these recipe cards at Target years ago... they were meant for a bridal shower gift. Oops... guess that never happened.



Mounted my scrapbook paper on my cork board using acid free scrapbook glue. Went to my handy dandy computer... printed off some menu items and my days of the week... mounted them on acid free scrapbook paper... wa la.



There she blows... err something. I am thinking the wall is a bit bare... and perhaps I should have made it a wee bit bigger... but whatever... nothing some accent items can't take care of. I have a menu planner and we have had our sit-down-and-pass-the-potato-dinners almost every night so far.

Love that.

(tutorial here)

::



We are anxious for warmer weather to settle in for the long haul... all the while taking advantage of the random sunshine that we have had. Our grass needs to green, our bushes need to bloom.





So... I am wondering... is it just my kids or are holes in the knees some sort of you know... new thing? Haha. Mason has holes in the knees of every pair of jeans he owns... literally.every.pair. And Nika... she has them too.





What on earth do my children do to their jeans? Momma gonna go broke replacing these things. On second thought... shorts are right around the corner... holes will have to do. I mean... they would just ruin the new jeans too, no?

Sigh.

::

More to come on inclusion, IEPs, labels... I have to show you the girls' identification bracelets I got and bounce more ideas on those... oh, and my Valentine's gift that I never posted about because I was in a funk over my failed FET cycle... it is coming... you know, in my spare time... oh, and a giveaway I need to get put up.

But for now... I need to go finish putting away my Christmas decorations... and my Valentine's decorations... and I need to do the dishes... and go through my kids clothes... and organize our storage area... and wash my dog... and decide on some new decor... and...