The last two weeks

Whew, we have been busy the last two weeks.  Jason has been working in Houston on a master bath remodel for some friends, so I've been a single momma.  I couldn't do that full time...my hat is off to all the single parents out there who work so hard every day!!

Let me take you through the highlights of finding a new SLP, the first 5K I've done (to support apraxia of course),  and the latest on insurance.

SLP search
My hunt for a new SLP for Charlie continued.  We visited two lovely women who could have possibly worked for Charlie.  But one only had evening appointments, and the other had just one day a week open.  Clearly those doors were closed.  Then, I thought I found the ONE for us...but that ended up not working out either.   So last week, I kept saying my manta, 'if God leads you to it, He will lead you through it."  My dad kept telling me something would happen at the walk.  So I waited.  And that's hard for me.  More to come on this later.

Apraxia Walk with Charlie's Champs
On Saturday, we took a small caravan of "Charlie's Champs" over to Bachman Lake in Dallas for the Dallas 5K benefiting children like Charlie who struggle to speak.  I'm very proud to say we all completed the 5K (yay Coco and Papa!!!!) with no issues.  There was a slight detour to a Whataburger around mile 2, but this girl needed her tea.  Thank goodness Debbie loves her diet Coke just as much.  And Coco and Papa made a small purchase there too, so I was in good company.

Our friends and family ROCK!!!!  Because of you, I was the highest individual fundraiser for the entire walk.  Charlie's Champs raised almost $3,000 to support children with apraxia.  I'm beyond touched by your generosity and love for our son.  Thanks to the passion of my parents, we had some folks who don't even know Charlie sponsor us.  When my dad called me about two of the donations, I cried.  In today's world of ME ME ME, it's hard to fathom someone would give money to support a child they've never met and a cause they've never heard of.

So thank you Jason, Griffin and Carter; Coco and Papa; Becky, Conner and Sydney; Paulette, Carter and Kayla; and of course my Whataburger buddy Debbie for braving the heat and walking for Charlie's Champs!!!  I love you all to the moon and beyond.

The thing my dad thought would happen at the walk finally did at the very end.  I had a check donation that I needed to give to the walk organizers.  As it happened, the person I found is the office administrator for a speech therapy group in Dallas that specializes, yes, I said specializes, in apraxia!!  Everything she told me about the SLPs in her practice sounded just perfect.  Down to the SLPs wanting and expecting parent participation and collaboration.  You have to sign a paper saying you will do just that or you can be dismissed from therapy.  I was ready to sign up right there.  And if that's not enough, guess whose methods they use -- Nancy Kaufman's.  I think I hit the trifecta on Saturday.

Because they are such a specialized clinic, they have a waiting list.  We can't see them until November.  Jason and I discussed it, and we feel this is the place Charlie is supposed to be at.  I can't wait to schedule our first appointment.  My dad was right.  Something great happened at the walk:)

While we were in Dallas, I got to meet a mom from Arlington and her 2 1/2  year-old son who has apraxia.  Stephanie and I have talked on the phone and texted back and forth for the last month, so it was great to meet her in person.  Her son was recently diagnosed, so I hope I can be a blessing to her as she starts her apraxia journey.

Insurance
This will shock you I know.  BCBS has denied all our speech claims yet again.  They are just hopeless.  It still drives me insane that we can't get any help to cover his therapy.  And just wait until next month when we add occupational therapy to mix.  Our bills will double overnight.

I'll blog soon about OT and the vital role in plays in helping kids like Charlie.  I didn't understand it myself until we went Michigan this summer.  And by the way, finding a quality OT is almost as challenging as finding a great SLP.  But we have an appointment for an evaluation next week, so please pray the OT will be a good fit for Charlie.

What about insurance??

My story of our journey with Charlie wouldn't be complete without talking about the role insurance plays in covering his therapy.  The quick answer is nope, insurance hasn't paid a dime.  If you like details, keep reading.

We've had a private policy through Blue Cross Blue Shield since 2005 (when I "retired" from the Shack).  Up until the first time I started looking for SLPs to help Charlie, I thought BCBS was a pretty good company.  That opinion changed drastically once I realized how little they do to help their customers.

In all the years we've had BCBS, we've really only used the office co-pay benefits (with 3 kids, I'm at the doc all the time...like just last week!!!).  Thankfully, we have rarely used the other benefits.  But the time our child NEEDS something, we get nada.  Here's why according BCBS.

For children under 3, BCBS only provides benefits if the child has a developmental delay as documented by a treatment service plan through Early Childhood Intervention (ECI), which is a state-run program.  Apraxia is NOT a delay...it's a neurological disorder.  And ECI dismissed Charlie from their care in September 2011 because they didn't have an SLP who could help him (their words, not mine).  Since we didn't have a service plan through ECI, BCBS denied all our claims for private therapy.  And they denied my appeals too because he didn't have a developmental delay.  I must have talked to them every week for six months.  I even got a case manager, but the answer was always no.

So then Charlie turned 3 in July.  And guess what?  STILL NO BENEFITS!!!  As a 3-year-old, we would have to prove he has an acquired brain injury to get any benefits.  Apraxia is not acquired, nor is it caused -- at least in Charlie's case -- by a blow to the head.   BCBS specifically excludes any other speech and hearing services after age 3 unless the services are treating a brain injury.  

It's so frustrating to know that we've paid a ton of money in premiums over the last several years to BCBS. Yet when our child needs something that necessary, no, critical, to his development, BCBS says we don't have coverage for that.  Do they think apraxia is something we wanted Charlie to have?  Do they think I enjoy chasing insurance forms and case managers and sitting on the phone for a hour at at time?  The answer is a resounding no.  I'd much rather spend my time working with Charlie on his sounds, thank you very much.  

If you aren't aggravated enough already, when I checked another policy's benefits, it specifically excluded apraxia by name.  And most moms of apraxic kiddos have similar stories.  We get no help from insurance.

Everything I read on apraxia treatment says children with severe apraxia like Charlie need 3-5 individual therapy sessions per week.  And that's just speech.  Other recommended therapies include occupational therapy, music therapy, hippo therapy and vision therapy just to name a few.  While we are certainly willing to do anything to help Charlie, we do like to eat and have gas for our cars:)  I wish we could do it all for him, but right now we have to pick our battles.  

So the long answer is insurance has not paid one dime for Charlie's therapy, and unless something changes, it won't ever pay.  Every dime we've spent for private therapy has come out of our pockets.  And SLPs don't have a discount if you pay cash:(

Boy momma theme songs

My SPEAK sister Jenny, wrote in her blog about how much the song "Home" by Phillip Phillips touched her heart, especially the lines:

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home

Perfect for our apraxia journey when you listen to the words, isn't it.  This is a very unfamiliar road, and we ride lots of waves.

A song that spoke directly to me the very first time I heard it was "I Won't Give Up" by Jason Mraz.  It says everything I want Jason, Griffin, Carter and Charlie to know:

• I will never give up on them.
• I give them all my love even with things get rough.
• I will not walk away from their problems.
• I appreciate and embrace their differences.

It's another beautiful song that takes on a whole new meaning when you filter through the ears of a special needs boy momma.  I listen to it often, and Charlie lets me sing it to him sometimes.

Here the song lyrics if you aren't familiar with the song.  I highly recommend spending the $1.29 to download it from iTunes:)

I Won't Give Up by Jason Mraz

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
Well, there's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?

Well, I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.

I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

This boy momma loves her boys!!!

His name is CHARLIE!!!

We got mail for Charlie addressed to CHARLES LAIN.  From our local school district.  On the paperwork for the school speech program. Really??

Charles.

That burns me up.  If we wanted his name to be Charles, we would have named him Charles!!  Yes, my grandfather's name was Charles, but all his friends called him Charlie.  Jason and I figured why give him one name and call him another.  It's Charlie on his birth certificate...not CHARLES.  Don't get me wrong.  I think Charles is a lovely name.  I know a couple of great guys named Charles.  But we wanted Charlie to be Charlie.

My brother is just Josh (not Joshua).  I'm just Jill (not Jillian). And Charlie is just Charlie.  I actually had to request the change in writing with the district.

Geez people, give our kid a break:)

Michigan changed us in so many ways

So fast forward to this summer, and off we went to Kaufman Children’s Center in Michigan for the month of July.  Leaving the big boys at my parents the night we left was one of the hardest things I’ve ever done.  Knowing that I wouldn’t see them for almost a month was devastating, and I cried all the way home.  Jason drove us 22 hours to the northwest suburbs of Detroit, and then flew back home.   So it was just Charlie and me for almost three weeks.  In a small hotel room.  Me and an almost 3-year-old!!  There were days when bedtime couldn’t come fast enough.

We looked like Sanford and Son moving into the hotel in Novi, MI, which was about 20 minutes from Kaufman Children's Center.

While I expected to learn a lot at summer SPEAK with Nancy, to say it exceeded my expectations is an understatement.  Each morning, we had a 30-minute session with Nancy and a 30-minute session with one of the other fantastic SLPs at KCC.   Nancy got more out of Charlie in the first session of therapy then his home therapist would get in 3-4 sessions.  I was in awe of Nancy.  Of course, she did tell me after that session that he had “some behaviors we needed to extinguish.” I love that word!!  Behaviors like turning his head if he didn’t want to try a new sound/word or raking the toys off her table when he thought he should be done.  Kiddos do NOT get away with those behaviors in Nancy’s therapy room, and I supported her 100 percent.

Charlie and the wonderful, incredible, unbelievable Nancy Kaufman

After lunch each day, we had a 60-minute group session with the other boys in SPEAK, who were from around the country and Canada.  One thing we learned through group was that Charlie has social anxiety.  He’s such a bubbly, happy kid at home that it never dawned on me that he would hide his face when it was his turn to “talk” in group.  It took almost the entire three weeks of SPEAK before he opened up and tried to approximate sounds without major prompting from Nancy.

Group therapy was just as important for me because I got to see other boys who were like Charlie.  Even though he was clearly the most severe of the group, it was great to see where he will hopefully be at some point next year.  The other key learning from group was how normal Charlie is in his activity level.  All the parents watched group from a two-way mirror, and it was quite humorous.   Those boys wore out Nancy and the other therapists helping in group.  Our running joke was which parent was going to called out to help with their kid first.  Any boy momma can totally relateJ

The SPEAK brothers from other mothers:)

Getting to meet other parents of CAS kids was an added blessing I wasn’t expecting.  I made friends that I know I’ll have for a long time (even though they will be long distance friendships).   I call them my SPEAK sisters.  Having a child with apraxia is very isolating because no one has ever heard of it.  Most can't fathom what it's like to know your baby so desperately wants to tell you he'd like a snack, but he can't find the words.  So he does the next best thing...grunts and points.  It’s a tough road we are on, but it’s comforting to know these ladies are just a phone call/text away.  I don’t feel so alone anymore.

The next several paragraphs I’m borrowing from a blog written by my SPEAK sister Jenny.  Jenny and her son Colten are from New York and attended SPEAK with us.  She wrote the most beautiful blog about her experiences, and I could not have said it better myself.   I’ve changed some things to mirror our experience, but Jenny eloquently wrote the majority of the words. If you’d like to read Jenny’s story about her expereince in its entirety, please visit her blog at http://flowercityfashionista.blogspot.com/p/apraxia-awareness.html

Excerpt from Jenny’s blog (with changes to fit Charlie):

In addition to daily therapy and friendships made, we learned so much as parents. We were taught how to script, how to approximate, how to cue and how to implement the philosophy of errorless teaching into practice. We left with the tools and the confidence to help him reach his speech goals.

If I had to sum up the more important things we learned, I think we took away three major lessons from SPEAK and our three weeks with Nancy Kaufman at the KCC.

•   Expect more because they are capable of so much more.

I think we, as parents, tend to unknowingly give our special needs kiddos a pass.  We know they struggle, so we try not to be too demanding of them.  And I have been very guilty of that (as have members of our family).  Charlie’s needs are met with minimal effort and communication – mostly through gestures and grunts.  Nancy proved to us that he is capable of so much more and that we can no longer accept “eh eh eh” or one word answers all the time.  We were doing him a disservice.  He can imitate.  He needs to do more.  He needs to speak.  And with help, he can.  I am so thankful that Nancy is bold enough to tell parents things they don’t necessarily want to hear, but need to hear.  In a world of wishy-washy people, it is so refreshing to meet someone who speaks the truth: no sugar-coating, no BS, just the truth.  And believe me, she spoke a word of truth to each boy momma about her little “angel.”  Charlie and I did not get a pass on this one either!!

•   Approximations are better than nothing.

One of the biggest criticisms of the Kaufman Speech to Language Protocol (KSLP) is that it TEACHES approximations.  In my opinion, this is the program’s greatest strength.  I am not an SLP or an expert in the field by any stretch of the imagination, but to me this makes perfect sense.  Apraxic children are overwhelmed by all of the complex speech sounds needed to form words.  That’s the root of this whole disorder. 

Why have them shut down because it is too hard when you can teach them to say “a-po” for apple (which Charlie can clearly say when he wants an apple) or “buh-deh-dee” for spaghetti?  Isn’t an approximation better than “dah, dah, dah” or “eh, eh, eh,” or worse:  silence?  Typically developing children approximate all the time!  Word approximations give these kids a starting point.  Every word can be broken down to a level that a child can imitate and coming up with appropriate approximations is easy to do once you get the hang of it.  If the whole word is too tough, we break it down.  Even if I use just the vowel sounds as a starting point, it's a start. Now he is able approximate simple 2-3 word sentences with lots of scripting, which brings me to the next lesson we learned…

•   Script. Script. Script.

Before we went to Michigan, no one had attempted to teach Charlie to say a sentence.  He didn’t really imitate well and had a very limited vocabulary.  Day one of SPEAK, Nancy had him saying pivot phrase like  “I want,”  “Put on” and “Open door.”  Seeing his progress made me realize what was missing from his home therapy program: scripting.  Now it is something we do all day, every day.  We had to completely change the way we communicate with him.  It is still not second nature to us, but our efforts are making a difference. 

Colten’s story and Charlie’s story are quite similar in some areas.  And even though she’s a Jersey girl and I’m a Texan, we hit it off like peas and carrots!!! Thank you Jenny for letting me borrow your wordsJ

Now it’s my turn again, so let’s jump back into scripting.  For example, when Charlie says “oo oo ah ah” and I know he wants to watch Curious George, he should be saying “I want mu ee” (monkey).”  I make him say the words and the more accurate approximation for “monkey” since George is way too hard from him right now. We need to script everything he wants to say because otherwise, he will revert back to grunts and gestures.  He still uses them, but we do our best to direct him into a “sentence” or at least his best approximation for what he wants.

I’ve had a lot of people ask how we were able to pull off me being going for almost a month.   If you know me well, I’m the cheapskate in our relationship, so Jason was adamant that he didn’t care how much it cost us.  Charlie WAS going to Michigan.  It was challenge to coordinate what the big boys were going to do, but my parents totally stepped in and took charge of Griffin and Carter.  Quite frankly, I think the boys were perfectly content with their own king-size beds, a huge playroom and a swimming pool.  And did I mention lovely cooked to order meals each night?  I think I need a couple of weeks at Camp CocoPapa myself!!

Our last day in Michigan.  We drove to Indianapolis so I could work a race the next day.                                                 Don't you love God's timing!!

The month was exhausting and expensive with the SPEAK fees, added OT sessions, hotel, gas, food, plane tickets for Jason – you get the picture. But we’d do it again in a heartbeat.  The confidence and hope Nancy gave us for Charlie’s future was worth every penny we spent.  If we could move to Michigan for a couple of years so Charlie could work with Nancy each week, I might have to get over my dislike of the cold and snow.

Once we got home on July 31, reality set back in.  We were no longer under Nancy’s wing and once again, on our own.

Nancy Kaufman becomes a household name for us

NOTE: After reading my first post, I realized I didn't include Jason much.  While I do the lion's share of Charlie's therapy, he is supporting us every step of the way.  Nothing is more precious than hearing Charlie work on his words with his dad.  And believe me, you've never seen a prouder man than when Charlie learned to say Daddy in Michigan.  Jason, I love you!!

August 2011 brought the final realization that Charlie did indeed have apraxia when my mom and I took him to see a seasoned SLP in Allen.  Coco found Sally after doing one of her many midnight Internet searches.  Sally was no nonsense and very direct about Charlie’s speech issues. She was convinced has apraxia, even though he was barely 2 years old.  She laid out an aggressive (and extremely expensive) therapy program.  

Sally also casually mentioned an apraxia specialist named Nancy Kaufman who pioneered several treatment methods for apraxia.  I remember very clearly my mom and I eating lunch at Taco Cabana after spending two hours with Sally talking about Charlie and what a hard road was ahead of us.  I was so overwhelmed by Sally’s matter-of-fact diagnosis that I cried most of the way through the meal. 

If we lived closer to Sally and her Allen clinic (it was 90 minutes one way from our home), we might have started therapy with her.  Since we didn’t, I started the search for an SLP in Fort Worth.  Finally in October, we found a clinic in Fort Worth that had a therapist who had some training in working with apraxia.

While Charlie made slow progress with the new SLP through the fall, I continued to research and learn everything I could about this condition that was choking his ability to speak.  Even though he had a few sounds, Charlie still communicated primarily through grunts and gestures.  And believe me, he could be quite animated when he really wanted something.

My mom and I continued our daily research on apraxia, and we found a speech clinic in Houston that was doing an apraxia boot camp the week before Christmas.  So Charlie and I packed up and headed to the Carruth Center in Houston.  The Carruth Center, coincidently, is a satellite clinic for Nancy Kaufman.  There was that name again. 

As I soon learned, Nancy is one of the national experts in apraxia.  She’s been a clinician for 33 years and has developed a line of assessment and hands-on therapy tools that both SLPs and parents can use.  The SLPs at Carruth use her methods almost exclusively, so I got to see how well Charlie responded.  Once again, the pros in Houston agreed completely that Charlie had CAS.   It was hard to hear yet another SLP confirm the hard road we were facing.  

As luck would have it, I found out Nancy Kaufman was scheduled to speak at Texas Tech University in February 2012.  My mom and I made the six-hour drive to hear Nancy’s presentation on “Children Who Struggle to Speak.” The audience was mostly SLPs from West Texas, New Mexico and Oklahoma, with a small sprinkling of parents.   After hearing Nancy talk about the hallmarks of apraxia, I was convinced 100 percent that was what Charlie had.  He WAS the poster child for severe apraxia in my mind.

Among the videos Nancy shared with the group were a couple from her SPEAK program.  SPEAK is her summertime program in which six children to join her team in West Bloomfield, Michigan for three weeks of intensive therapy. 

My mom and I got to have lunch with Nancy and three other parents to discuss our children.  I also ran into (okay, I followed) Nancy in the bathroom, and we talked more about Charlie.  She recommended I send her a video of Charlie in therapy so she could give us her opinion.  In the back of my mind, I was secretly praying we could figure out a way to spend three weeks in Michigan for SPEAK.  Nancy gave me more hope about Charlie’s future than I’d had in months, so I wanted her to see how much Charlie struggled.

Jason put together a 30-minute video, with a Power Point “selling” Charlie to Nancy.  When she called me a week later to discuss what she saw on the video, she agreed with that Charlie was special little boy.  She gave us some ideas to incorporate into his private therapy, but more importantly, she said he was great candidate for her summer SPEAK program...

Apraxia? Never heard of it

As anyone who knows our family is aware, Charlie struggles to speak.  Actually, struggle is a generous word.  If I’m honest, Charlie really cannot produce spontaneous speech on his own.  He has a rare neurological condition called childhood apraxia of speech (CAS).  I pulled the following description from the Apraxia Kids.com site:

Childhood Apraxia of Speech is a neurologically based speech disorder that can affect anyone. These children have difficulty creating the motor plans to produce and sequence sounds into speech. The brain knows what it wants to say, but it is not communicating effectively with the mouth. CAS requires frequent, intensive therapy with a professional who understands the problem and knows the techniques to help children progress. It also requires full family support and regular reinforcement outside of the therapy room. These families live, eat, and breathe apraxia.

To look at Charlie, you would NEVER know he is a special needs child.  He has the most infectious smile and darling laugh.  He adores his big brothers (when he’s not pounding on them or trying to steal their toys).  After his stint in the NICU when he was born, the neonatologist told us we needed to watch his development in three areas because of the pure oxygen he received and the jet ventilator he was on (both which helped to save his life): his vision, his hearing and his speech. 

His vision and hearing had easy methods to detect any deficiencies.  A pediatric eye specialist examined his eyes when he was an infant and assured us the oxygen he received in the NICU did not damage his retinas.  So, I checked that off my worry list.   At 9 months, we did a sedated hearing test at Cook Children's, and again, everything came back a-okay.  So from 9 months on, the waiting game began to see if Charlie would have any speech challenges. 

When I think back to the summer of 2010 when he turned 1, down deep I knew he was going to have problems.  I knew there was some terribly wrong with Charlie’s speech development, or lack there of.  And Coco (my sweet mom) will tell you the same thing.  I guess it’s just a mother’s intuition.   At his 12-month checkup, he met all his development milestones…except for language.  By that time, he had said “mama” and “dada” a handful of times, but that was it. Our pediatrician, who is a personal and dear friend of mine, was concerned too, but she wanted to give him a few more months to develop some sounds.

At his 15-month checkup in November 2010, Charlie had no new sounds or words (and he’d lost mama and dada completely), so we decided it was time to call Early Childhood Intervention (ECI).   He was seen for the first time right before Christmas.  I’ll never forget the day, Dec. 22, when I first heard the word apraxia from the ECI case managers.  I couldn’t even spell it, much less did I know what it was.  During that evaluation, he was found have the language development of a 6-to 9-month-old. 

After the ECI ladies left, I did what any normal mom would do.  I went straight to the internet to found out what apraxia was.   I was so distraught by what I found, I cried.  Apraxia was not just a speech delay…something that a little therapy could overcome in a few months.  It has no cure, no magic bullet.  This apraxia was serious business, and it wasn’t something I was prepared to label Charlie with.  So we waited. And hoped these ladies, who were not trained speech therapists, were wrong.

It took ECI almost three months to assign Charlie a speech language pathologist (SLP).  After a couple of sessions, she thought Charlie might have apraxia, but said he was too young to diagnose.  So she treated him as though he had expressive language disorder until “she could rule out apraxia.”

For an hour each week, she would use books and puzzles and toys to elicit sounds out of him, any sounds.   I would clap and praise him for practically any sound he made.  The ECI SLP also suggested we teach him some sign language, which he picked up on very quickly. 

This weekly dance went on for six months.  The SLP would come to attempt to get Charlie to make rudimentary consonant and vowel sounds.  I’d cheer him on.  Then, I’d work with him during the week on the sounds he was supposed to be learning.

In hindsight, I should have dropped ECI after the first few months because as well-meaning and sweet as our SLP, she wasn’t being aggressive enough with him.  At his 2-year-old checkup in July 2011, he was still grossly behind on his language milestones.  He still had no words and one very worried momma.

Throughout last year I can’t tell you how many well-meaning family and friends told us (and my mom) one or more of the following:

    “He’s a boy.  They usually are late talkers.”

    “His brothers are talking for him, so he doesn’t have to learn any words.”

    “Your house is too loud.” – well duh, we have three boys!!!

And my personal favorite:

“           “He will talk when he’s ready.”

Deep down, I knew everyone was 100 percent DEAD wrong with their theories, but my heart hoped someway, somehow, one of their theories would be right.