Apraxia of Speech . 2 Years

2 years.

At the beginning of last year I posted a "1 year" update for our boys' journey with Apraxia of Speech.  I commented then I didn't know how often I would update the blog on the topic, and it turns out, it was barely.

Ryder is doing phenomenal.  The boy has picked up an incredible amount of speech in 2013.  At the end of summer this year Patrick shared with me a voicemail message he has been saving since July 10, 2012.  To give you a bit of background (I researched it!) - it was the morning of Ryder's last speech session with Early Intervention (before "aging out" a week later - on his 3rd birthday).  Given what I say on the message, Ryder must have had a hard time having Patrick leave with his brothers (to go to work, and daycare, respectively), and having to stay home with me.  The recording is primarily my voice, with Ryder "repeating" what I am saying.  The most intelligible words he says are at the end:

"I uv ooo" 


I love you.  He couldn't say it fully, but he tried.  He "repeats" other parts of the message, with a few hit and miss intelligible words, but this was the most intelligible part.

When Patrick played me the message - I had no idea he had saved it for over a year - I immediately teared up.  Truthfully, I tear up every time I listen to it.  My baby could not say "I love you" just over a year ago.  Contrast that with his goodnight parting with me at the beginning of December:

At bedtime tonight with Ryder-Me: I love you to the moon and stars, and back!Ryder: I love you in the morning, and in the afternoon. I love you in the evening, and underneath the moon, and the stars, and then all the way back! I win!!

Honestly, he did not enunciate each word perfectly, but it was 100% intelligible.

This (school) year we ended up declining the speech services offered through our school district for Ryder.  It was a very hard decision (and rather infuriating), but it was the best choice for us.  The school district has put up numerous road blocks and rolls (and rolls) of red tape - all self imposed.  We pushed our concerns up the chain of command, stopping short at the Superintendent.  Had we not had 2 more children at home still receiving Early Intervention services, and possibly qualifying for preschool services, I would not have stopped.  If the obstacles are still present when (if) Harvick and Jarrett need the services, we will go further in our fight.

Harvick and Jarrett both remain nonverbal.  They are very communicative, generally in pointing, facial expressions, etc.

Harvick is the more willing participant in speech practice with flash cards and worksheets.  He is so proud of himself when we practice speech with him, even when he is far from the correct sound or word.  He tries so hard!

Jarrett does not like flash cards or worksheets.  Ever.  However, we are able to "sneak" speech practice into play with him easily.  He doesn't seem to mind having to practice when he gets to play!

Truthfully, we don't have a diagnosis for either Harvick or Jarrett.  Nearly everyone involved with their speech is "sure" Harvick has Apraxia of Speech.  However, Jarrett's issues present a little differently, and he has kept us guessing.  We know his speech is delayed, but he doesn't seem to have as great of a struggle learning the correct way to make a specific sound.  But, there is still a struggle.  From what research I have done, Apraxia is not a "spectrum" disorder where different "symptoms" can present in each child (like Autism).  There is, of course, a severity scale - ranging from mild to moderate to severe.  Perhaps Jarrett is at the mild end, with Harvick (and Ryder) closer to moderate.

Both Harvick and Jarrett had ear tubes placed in July of last year.  Harvick also had his adenoids removed.  It's unclear how much of an effect this had on their speech.  Technically, by removing the fluid, they are able to hear more clearly.  For them, it did not mean a "switch" was turned on, allowing them to speak.  We are, of course, happy with the decision to have the surgery completed - neither of the boys need an additional barrier in their verbal communication!

Harvick and Jarrett are both enrolled in Early Intervention, and will continue to receive in-home Speech Therapy twice a month until they "age out" (on their 3rd birthday).  At that time, they will be evaluated for further services (one option is the preschool Ryder attended).  Their SLP and OT (we determined an OT was a good fit for us, in helping to learn how to best engage each boy in the therapy) are both awesome.  Harvick & Jarrett's SLP is different than the one we were assigned to with Ryder.  While Ryder's SLP was a good fit for him in the end, we absolutely love the one we are working with now - from the beginning!  Both the SLP and the OT genuinely care about both boys, and the boys love when they come to visit!
Each of the boys also receive weekly private Speech Therapy.  Their SLP is the most amazing person.  I know Patrick and I have put in countless hours of speech practice at home, and that each of the boys work so hard.  But, I very much believe my boys' ability to speak rests very much in the SLP's hands.  Our boys are a handful.  Each of them, in different ways.  Being smart enough to have an opinion, but not possessing the ability to verbally communicate your need, is extraordinarily frustrating.  Our private SLP works with each of them to find what method(s) works best, and tailors each session to the needs of the boys at that time (each boy is seen separately).  Clearly, we pay her for the service she provides, but I don't know how, really, to thank her.  I tell her often, and I pray she doesn't feel it is cliche.

So, what lies ahead for our boys?  

Ryder will continue in weekly private Speech Therapy until our SLP recommends we decrease frequency.  He will be in Kindergarten this year (seriously, I can't believe I have a child old enough to enroll in school!).  His future with "special ed" is uncertain, as I'm not sure anyone would have predicted Ryder would have made the progress he has (we were told he was extremely "severe" at the initial diagnosis).

Harvick and Jarrett will continue in Early Intervention through their 3rd birthday.  They will be evaluated for possible additional services - much of which is at the directive of the school district, we get very little input.  Where they attend preschool next year is largely influenced by the services they will be qualified to receive.  And, we will keep them in weekly private Speech Therapy until our SLP recommends an increased or decreased frequency.  

Walking through this journey with Apraxia of Speech is difficult.  I have had more than a few breakdowns about it.  It is hard watching your child(ren) struggle to do something that is so easy for the majority of their peers.  It is heartbreaking when you overhear another student calling your children stupid, because they don't talk.  But, in the same breath, I am full of pride to hear Ryder's response:

When I picked up the boys from school today, one of Ryder's classmates commented to Ryder that his "brothers are stupid because they don't talk". I began to intervene - but, Ryder's response was so much better than my own - 
"You don't have to talk to be a genius".
 He could not be more correct. Such a good big brother!
(Photo from our October "brothers" picture - in our house, it's "monkey see, monkey do" with those boys!)

Ryder understands his brothers' struggles better than I will ever comprehend.  He gets it.  It's hard.  Of course, he is still a typical 4-year-old big brother, who doesn't always get along with his little brothers.  Sometimes I'm amazed at the fights they can pick with each other, considering two of them don't actually use words to argue.  They are constantly battling over who gets to play with a certain train, or whose turn it is to do a various task.  However, under that, on a deeper level, they get each other.  Ryder is their greatest cheerleader.  He prays nightly, without fail, that his brothers "wearn (learn) to use their words to talk".

In a sign of solidarity, for about a week(+), Ryder has reverted to calling Patrick & me "Dada" and "Mama" whenever his brothers are around. While part of me misses hearing "Daddy" and "Mommy" (or "Adorable"!), a bigger part of me is so very proud of my baby's empathy - he wants to be a good example for his brothers. Simplifying words helps the boys with their speech. He gets it.

A few weeks ago, as I drove home with the boys (on a night Patrick was teaching class), Ryder requested french fries when I asked what he wanted me to make for dinner.  I responded, telling him that wouldn't be happening that night.  Without any hesitation, Ryder asked his brothers "Will one of you just say 'french fries' - mom likes to hear you use your words, and if you will say it, I know she will buy them".  He then proceeded to break down the words for his brothers - eh, feh, fech, french, i, ies (eyes), fies, fries.  Harvick didn't enunciate beyond the "feh" and "ies", but he gave it a try.  Jarrett clearly said "fies".  And, I stopped to buy a french fry for the boys to share.  Ryder knows me well.  It was worth the $1.

Thank you to those that have read this post in it's entirety.  The community of friends and family that have supported us, and continue to support us, with this journey are invaluable.

I'll end with a reminder of something I shared last year:

To any of our friends with young children (especially Ryder, Harvick, and Jarrett's ages) : don't hesitate to tell me fun things your child says.  Or, new words they are learning.  I'll be honest, sometimes it takes a conscious choice to not be sad for my boy(s), but I have never, ever, not been happy for you to experience this. 

We will beat this.  Again (and again!).  

One-step-at-a-time.

Back to School . 2013/2014

The boys' "back to school" pictures for the 2013/2014 school year...

(Last year, we had Ryder's pictures taken by a photographer for "Back to School".  With all 3 boys headed "back to school" this year, we went to Ali (Clearly Seen) for her mini sessions.  Ryder and Harvick participated well...while Jarrett took a bit longer to warm up.

It didn't work out to get shots of the boys' backpacks and lunchboxes with them, so we grabbed a shot along the fence where we could see their names embroidered!

Ryder is so excited to have his brothers join them at school!  Harvick & Jarrett also get excited when we talk about them going with Ryder - and, they love to wear their backpacks!  It will be another 3 years (Ryder in 2nd Grade, Harvick & Jarrett in Kindergarten) before the boys are in the same school together - I'm hoping they are just as excited then too!)

If you're wanting to get your child's picture taken, I'd highly recommend Clearly Seen!  Ali is awesome - and, she's still offering these backgrounds.

First Day of School . 2013/2014

This year ALL THREE boys had a "first day" of school!  Ryder was so excited to have his brothers come with him, and both Harvick & Jarrett loved getting to go!

My post to Facebook last night.
(Tomorrow is Ryder's first day of (4-year-old)Preschool. And, Harvick & Jarrett start (2-year-old)"Preschool". Ryder is so excited for his brothers to join him at school (even though they're in different classrooms)...let's hope the teachers are excited too!)

(First Day of School . 2013/2014

This year all of the boys are attending school.  Ryder has attended one day per week since June 2012, and two days per week the summer of 2013.  This year, he will be attending their Preschool, and will be there on Monday, Wednesday, and Friday.  Harvick & Jarrett will be joining him two times per week - on Monday & Wednesday.  While the school doesn't technically have a 2-year-old Preschool, they have a structured classroom environment.  Everyone was excited for the first day, and were happy to have their name on their backpack!)

(For the most part, the boys cooperated with pictures before school...although the outtakes are often my most favorite!)

And...because I realize that my new method of blogging doesn't provide the clearest/best quality pictures, a few repeats for better viewing!

Ryder, Harvick, and Jarrett
First Day of School . 2013/2014

These silly boys wouldn't let me get a good group shot!

We had their names embroidered (in their colors, of course) on their backpacks and lunchboxes!

Harvick & Jarrett . Tube/Adenoid Surgery

Over a month ago, Harvick & Jarrett both had tubes placed in both ears.  Harvick also had his adenoids removed.  And, of course I did my best to document the day with some pictures.

(On July 18th Harvick & Jarrett both had tubes put in both ears, and Harvick had his adenoids removed.  The surgery was scheduled for 8:00am; however we had to wait nearly an hour for you before surgery began.  Jarrett went first, and Harvick followed about 45 minutes later.  In recovery Jarrett ONLY wanted Patrick; and Harvick ONLY wanted me.  The small puppy stuffed animals, along with a laptop & iPad kept you each entertained as we waited in recovery.

I stayed with you at home that afternoon.  Neither of you felt back to normal, and were lethargic.  However, neither of you were interested in napping in your own bed - so, we played together, and you each took turns falling asleep on the floor (something you NEVER do!).  You also each took turns taking care of each other.  Jarrett rubbed Harvick's back for nearly 5 minutes before Harvick could fall asleep, and you both laid together with Harvick rubbing Jarrett's back in order to wake up.  Your closeness amazes me - I pray it stays this way always.)

And., the FB updates for my non-FB family...

"Nothing helps you heal like being with your brother. When Harvick was tired earlier, Jarrett laid next to him, rubbing his back, to help him fall asleep. Now, the boys are both just groggy, and laying (awake) together, with Harvick comforting Jarrett. I pray they have this close (and reciprocal!) of a relationship always."

The results of the tube surgery is not noticeable in the boys' speech.  It is likely that with the fluid removed, the boys are both able to hear more clearly, which will in turn allow them to speak sooner/more clearly.  With the removal of Harvick's adenoids, he is snoring less, and breathing with more ease.

Overall, the boys did great with the surgery.  Jarrett was pretty much back to normal the next day, but it took Harvick a little longer - he ended up developing an infection from the adenoids being removed.  After a crazy strong antibiotic, the infection was resolved - day 6 following the surgery (day 2 of medicine), he was back to normal completely!

Apraxia of Speech & Surgery

Upon first writing about Apraxia of Speech, I made a goal to write weekly updates, and I did...at first.  As progress was slow, and our therapy schedule/routine changed, I lessened.  At the beginning of this year, the 1 year mark, I made no promises.  In my mind, I had planned to write a mid-year post on July 1.  Why do I make these goals?  I know life will get in the way.

Fun filled evenings and weekends.  Swimming every week.  Soccer.  Speech Therapy two to four times weekly.  Busy.  Summer life.

Oh, and fluid concerns...

Back at the Early Intervention (EI) assessment for Harvick & Jarrett, the therapists could not get a reading with the tympanogram - an instrument inserted in the ear (like a thermometer) that forms a seal, and a pressure test - intended to check for fluid.  Harvick is a mouth breather, and had a bit of a cold.  Jarrett was wiggly.  The therapists weren't concerned - both boys respond to commands, and passed the birth hearing screening.

When our EI therapist visited, she made mention of no result.  She wasn't content with not having a reading, so she brought the machine to our home at the next visit.  She was having issues with the machine working properly - it would error, or would read as though there was fluid.  Weird.

So, we had the boys' doctor look at their 2 year appointment.  He noticed both ears were "sucked in", but thought it was fairly insignificant - likely due to allergies (Patrick has them, and Ryder seems to as well).  So, the boys took a low-dose allergy medication.  The doctor's tympanogram results a month later showed definite fluid in Harvick's ears, and some in Jarrett's ears.

But, wait.  The boys are healthy.  They have each had an ear infection in each ear (one in Spring 2012, and again a year later).  Antibiotics resolved the issue each time.  Nothing chronic. 

An appointment with an ENT revealed Harvick has "significant and thick (mucus like) fluid".  Jarrett has the same viscosity of fluid, but slightly less.  Harvick also has enlarged adenoids (something we've suspected since birth, but without any significant issues (chronic sickness), it isn't treated).

Both boys need tubes.  In both ears.  Harvick will likely have his adenoids removed (they will do a scope when he is under anesthesia to be sure).

So, how does this relate to Apraxia of Speech?

Well, had we not been through the thick of Apraxia of Speech, Patrick & I (and our doctors and therapists) may have been concerned sooner about Harvick & Jarrett's lack of speech.   Harvick & Jarrett have still not been diagnosed with Apraxia, but it is suspected.

The surgery has a multitude of outcomes - the best case is that the tubes are a "magic pill".  That, with the fluid removed, they are able to hear clearly, which will allow them to talk clearly.  Worst case is that we are only battling Apraxia, now with no fluid to impede progress.  And, a million in between possibilities.

But, as I wrote earlier this year, we are facing this challenge head on.  Harvick & Jarrett have already received EI therapy and private therapy earlier than Ryder.  And, Ryder has made immense progress.  To think that at his 3rd birthday party he was still saying very few words, and today - Ryder's 4th birthday - he talks constantly.  Endlessly.  He is witty.  He has his father's sense of sarcasm.  He is funny, and he knows it.  He is curious & inquisitive.  He can express himself - with words.

The boys will be in surgery tomorrow morning.  The surgery is short (Harvick's will be a little longer because of the scope, and possible removal of adenoids).  Recovery time is quick as well.  We may be able to tell a difference in their speech as early as hours following.  Or, it may take a little while, as they re-learn to hear words and sounds correctly.  Or, an improvement may not come directly relating to the tubes, but with the intense Speech Therapy big brother received.

Please say a prayer for our little boys as the surgery is completed.  And, while my prayer will be that it is the "magic pill" to resolve their speech, it will be okay if it isn't.

You see, I have a love/hate relationship with this diagnosis.  Because, I want to end this post with "DAMN APRAXIA!"  Yet, I know that without it, Ryder may not be the reflective child that he is.  He understands the power of words.  He knows he can effect emotion with what he says.  He is empathetic because of it.

So.  I'll end this post as I have all other times I have written about Apraxia.

One-step-at-a-time.

Harvick, Ryder, and Jarrett
(taken at Harvick & Jarrett's 2-year-old session)

Boys' Birthday Party . 06.01.2013

We thought we would skip hosting a birthday party for Ryder this year.  Our intent had been to do a "big" 1st year party, and then do more of a family thing until he was older.  But, we held a 2nd birthday party to make sure he didn't feel like his brothers were taking over the attention (being born 2.5 months prior).  Then, we did a 3rd birthday party last year since his brothers got a "big" 1st birthday party.  But, something seems extra special about twins turning 2 - 2 2 year olds.  So, I had the idea to do a party for all 3 boys...in one!  

On June 1st (between the actual birthdays) we hosted their robot-themed birthday party.  The boys have plenty of possessions, so we elected to make it a "no presents" party - it was really a barbecue with birthday treats!

If you are looking for custom made shirts, you must check out Bluewater Road Kids.  The owner is incredible!  SO easy to work with, and the shirts are the best quality!  They've held up to multiple washings, and still look like brand-new.

Also - we've yet to have a "birthday cake" at any of the boys' parties.  At this age, we just figure that it is easier to not mess with extra plates and forks!  A few months previous, some co-workers took me to Madbrook Donuts - I decided then that we would order their donut holes as the birthday treat.  Madbrook was great to work with, and was more than happy to customize 12 dozen donut holes with the boys' colors - in sprinkles!

And, I think when my ability to write (and have people still read it) is limited, I tend to summarize things the best:

Harvick & Jarrett's 2nd Birthday . 05.04.2013

Harvick & Jarrett's 2nd birthday landed on a Saturday this year - we took advantage of our day together, taking Front Runner to Salt Lake.  We spent the day at the Discovery Gateway Museum, with a break for lunch at California Pizza Kitchen.

And...true to form, I took too many pictures.  And, blogging them all takes too long.  And, I am ridiculously behind on scrapbooking.  So - I'm trying something new.  I scrapbooked the day (and took too many layouts to do so...), and will post that here.  2 birds, 1 stone...right?!

Our day was perfect - celebrating our boys!

Harvick & Jarrett . 2 Year Comparison

Today Harvick & Jarrett turned 2 years old!

These boys have brought so much joy into our lives.  They were very much an unexpected double addition to our family, but we wouldn't change it!

Today we celebrated as a family - just the 5 of us.  As I transferred the (many, of course) photos to our computer, I couldn't help but share one tonight (more will come later).

05.04.2013
2 Year Birthday

The boys all had a great time today.  Harvick & Jarrett weren't able to stay awake, falling asleep before we made it all the way back to the Front Runner station.  Patrick & I each were holding one, when Ryder (who was having a hard time staying awake too) requested to sit with Patrick - I offered to take both Harvick & Jarrett (both sleeping).  As I looked down at my boys, the picture from the day we came home from the hospital flashed in my mind.

05.06.2011
2 Days Old - Minutes after coming home from the hospital

My boys have grown so much!

HAPPY BIRTHDAY BABIES!

Harvick & Jarrett . Toddler Bed

Out of necessity, we transitioned Ryder out of his crib a bit earlier than we had planned - at 18 months old.  So, with Harvick & Jarrett, we really didn't know the "right" timing.  In the end, we decided to take advantage of my last 3-day weekend (an extra night without work the next day!) for awhile, and over President's Day we transitioned the boys to the Toddler Bed.

My (limited) PhotoShop edited "before" picture.

While Patrick worked, the boys took advantage of the mattresses being on the floor.

Once the front rail was down, Jarrett & Harvick immediately climbed on Jarrett's bed.

Of course, we added the partial rail guard.

Ryder & Harvick wanted to help with the second crib.

Harvick enjoying his "new" bed.

Harvick was having a hard time covering himself up, so Ryder helped!

"After"

Both Harvick & Jarrett have adjusted well to their Toddler Bed.  About a month prior to transitioning, they had weaned themselves completely from their pacifiers.  A week or two after transitioning, they both reverted to wanting it at bedtime.  They both struggled slightly with having the new option of freedom at nap time - including a few instances of every single diaper pulled off of the bottom shelf, and strewn about the room.  They quickly learned that this wasn't okay!  We've had a few instances of one (or both) boys getting out of bed before falling asleep, but closing their door initially has helped with this (during naps we open it up again after about 20-30 minutes; at night it is opened when we go to bed).  The funny thing about this is that they each have the ability to open a door, but somehow seeing it closed is enough to stop them!

Although I want them to sleep in their own bed, I have to admit that the handful of times we have found them in each other's bed is about the cutest thing - these boys play hard (and rough!) with each other, but they have an undeniable connection!

Also - over the first weekend we had transitioned them, both Harvick & Jarrett climbed in bed with Ryder during their naps (Ryder has "quiet time" in his room at the same time).  Ryder loved it, and even helped them hide under the covers when he heard me coming back!  Clearly, this wasn't okay for the long-term, but it sure was hard being upset at them for wanting to be together!

Harvick & Jarrett . 23 Months

23 months old

.
31 pounds, 11 ounces (Harvick)
32 pounds, 5 ounces (Jarrett)
.
(Compare to Ryder at 23 Months)

So...I'm a little late with this post (considering they are now closer to 24 months!).  Oh well, better late than never!

Not anything too big to report this past month.  Harvick & Jarrett have both adjusted well to their toddler bed (yet another topic I haven't posted!).  They did revert to taking their pacifier again to fall asleep (about a month prior to being transitioned, they gave it up on their own).  But, it's only a bedtime thing, and they readily put it away in the mornings.

The boys have started Early Intervention for Speech.  Progress, as expected, is slow.  Neither are verbalizing anything consistently.  Having a non-verbal child really demonstrates how much of our communication is non-verbal.  Harvick & Jarrett are able to communicate with us - we still lack the ability to know a specific request at times, but for the most part, we are able to help them with what they are wanting.

The boys enjoyed the warmer weather - taking advantage of playing outside!  Harvick & Jarrett like to be with Ryder whenever possible - often following him around when they are playing.
(And, look at Jarrett's face in the bottom picture - the kid cracks me up - he positioned himself all on his own!)

The Stomp Rocket Ryder got for his 2nd birthday remains a favorite toy.  Grandma Jody & Ann even bought the boys refill rockets!

Everyone loves the power 4-wheeler, but Harvick needs a bit of guidance directing it - Ryder was happy to help.

Chalk!
(Harvick on the left, Jarrett on the right)

Funny how a box is such a fun toy!
(Harvick on the left, Jarrett on the right)

LOOK AT THOSE HATS!  I picked them up for $1 on a super clearance - both boys LOVE wearing them (even when they clearly don't match their outfits).
(Harvick on the left, Jarrett on the right)

Easter Eggs!
(Jarrett on the left/top, Harvick on the right/bottom)

Playing independently - I'm often asked if they play on their own, or always with each other.  They really do both!
(Jarrett on the left, Harvick on the right)

Patrick is always so patient to let the boys help with his projects.  Everything takes a much longer time to complete, but they are always so proud of themselves for helping!
(Jarrett helping on the left, Harvick helping on the right)

In LESS THAN 2 weeks (see, I told you I was late!), we are going to have TWO CHILDREN AGE TWO!  It's going to be interesting...