Apraxia Awareness Day . 2014

Wednesday, May 14th is the second annual Apraxia Awareness Day.

Much like I did last year, I find myself struggling with this day.

Bringing awareness is important.  In order for people to understand why our boys do not speak, they really have to know that they are affected by Apraxia.  Apraxia is not a visible disorder.  By looking at our boys, you would never know there is something much deeper going on inside.

Yet, our boys will not be defined by this.  I fight to ensure their teachers understand, that they are included in all typical activities of their peers.  Yet, I want their teachers to have high expectations of them, to not excuse behavior because of their inability to talk.

It's a fine line to walk.

Another Apraxia mom explained the struggle of Apraxia well on her blog:

Imagine you are a small child, playing outside, and you get stung by a bee or fall down and hurt yourself. You’re scared and crying and you run to your parents. But you can’t tell them what happened or how to help you or where it hurts. So you just sob and embrace your mom and dad until your just get used to the pain or it goes away.

This is us everyday right now.  Harvick and Jarrett do not have the ability to tell us what is wrong.  What is hurting them, what they need to feel better.  We comfort them, and make our best attempts to determine what's wrong, but often have unanswered questions.

This was us everyday with Ryder.  It is through intense speech therapy that we have a son who is able to articulate his feelings.  His emotions.  Without therapy it wouldn't be possible.

Like last year, the Childhood Apraxia of Speech Association of North America (CASANA) is encouraging people to wear blue & white on Wednesday, May 14th to bring awareness to Apraxia.  Last year I was surprised by just how many people made the decision to join us.  We'd love for you to join our family in this show of support again!

We will beat this thing.

One-step-at-a-time.

Apraxia Walk REGISTRATION . 2014

It's that time of year again!  The Childhood Apraxia of Speech Association of Northern America (CASANA) hosts an annual walk to benefit further research and support of Childhood Apraxia of Speech (CAS, or just "Apraxia" is what I say).

You can see a recap of our perspective on last year's Apraxia Walk HERE.

The details for the upcoming Utah Apraxia Walk:

WHEN:
Saturday, June 7, 2014
Registration: 10:00-11:30am
Walk: 11:30am

WHERE:
Legacy Park - Foxboro Splash Pad & Park
1160 W 1100 N
North Salt Lake City, UT 84054
(about 20-30 minutes south of Ogden/Roy)

I don't know the exact length of the Walk, but it will be at least a mile, up to two - when I know more, I'll update here.

COST: 
$20/adult
$10/child
Registration increases $5/adult day of the Walk.

In order to ensure you get a shirt in your size, registration should be completed online by this Sunday - May 11, 2014.

2014 Apraxia Walk Shirt

To register multiple people in one transaction, CLICK HERE.  On the upper left corner there is a blue "REGISTER HERE" button.  After you agree to the Waiver/Agreement, select "Register Family", then "Join a Team", and choose "Team Hansen" from the drop-down menu.  

To register a single person, CLICK HERE.  On the upper right corner there is a blue "Join Team" button.  After you agree to the Waiver/Agreement, complete the form(s).

And, because I said it well last year, I'll repeat the same again - 
I do know the cost of the event can add up, especially if you have children.  I know it's in Bountiful North Salt Lake - a bit of a drive for many of you.  If it would work for your family, we would welcome the support of you joining us.  Walking with us.  But, for those of you whom this is not a possibility, for any reason, there is no pressure.  We know that you walk alongside our family "in spirit".


Thank you, thank you, thank you!

Let me know if you have any questions.

(Jarrett, Ryder, and Harvick)

We'll beat this thing, one-step-at-a-time.

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.

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)

Apraxia Awareness Day . 2013

Tuesday, May 14th is the first annual Apraxia Awareness Day.

As you know, Apraxia affects our family greatly.  As this day approaches, many of the pages I "like" on Facebook are a buzz about the day.  Getting it signed into official congressional record.  Attempting to get each state to recognize the day.  Selling awareness items - clothing, jewelry, mugs, hats.

Yet, I feel conflicted.  

I want the world to understand Apraxia.  I want to stop receiving the hurtful comment of "See, if you would have just been patient, Ryder would have eventually talked.  It just takes time".  IT DOES NOT JUST TAKE TIME.  It has taken over 4,000 minutes.  FOUR THOUSAND MINUTES. of Early Intervention, Speech Therapy privately and at Preschool.  And, countless minutes more of practice at home.  It has consumed our thoughts, our routines, our activities at times.  It is always in the back of our mind.

I do not want Apraxia to define our son.

Our church is currently studying James.  At a recent Home Group (small group Bible Study), we talked about trials we have faced, and how it has affected our faith.  Apraxia is not my own struggle, but dealing with it is.  I am thankful that as Harvick & Jarrett stand at the start line of their own speech journey we can have hope, seeing the example of their big brother.  At the initial diagnosis, we were told Ryder would not reach developmentally appropriate (verbal) milestones until early Elementary.  He has defied the initial prognosis.  He truly encapsulates the word resilient   He has worked tirelessly to increase his verbal expression.  And, he now joins Patrick & I to help his brothers.

Harvick & Jarrett are working with Early Intervention, and Patrick & I have made the decision to start them in private therapy with Ryder's amazing SLP.

We will beat this thing.

The Childhood Apraxia of Speech Association of North America (CASANA) is encouraging people to wear blue & white on Tuesday, May 14th to bring awareness to Apraxia.  We'd love for you to join or family in this show of support.

We will beat this thing.

Inspired by many others on Facebook, I created this cover photo to encourage others to join us on May 14th.
How perfect is it that the boys are wearing blue & white in the photo?!

One-step-at-a-time.

Apraxia Walk . 2013

Yesterday was the Utah Walk for Children with Apraxia of Speech.  Whew - I just call it the "Apraxia Walk"!

The Walk wasn't quite what I had expected, but I am glad we participated.

We got to the Walk early to check-in.  It had rained all morning, and it was still rather cold.  The boys were layered well, which worked out fine, since their shirts were way too big for them - they just wore them over the layers & jacket!  The boys each played the "Go Fish" game, and ate a picnic lunch under the bowery.

The Walk was actually 2.5 miles (a 4K), rather than the "1ish" mile I had been told.  Our Team was mostly together, but I am missing pictures of several people (ahead of us).

Once back, we waited as they drew raffle winners, and then awarded the "Apraxia Stars" with a medal, and a bag of various trinkets.

(Ryder, Harvick, and Jarrett)

Due to some last minute events, our Team was down a few people.  I also didn't get a chance to grab a picture of everyone there.  There is always next year, right?!

Left: Us (Jarrett with me, Harvick with Patrick, Ryder standing)
Top Row: Reed/Sheldon Family; Jim & Martha Harris
Bottom Row: Felice Gant & Mariah Ruiz; Gerry & Roxie Sianez

I wrote the following on Facebook last night:

It's been a long day. A good day, though. Thank you to everyone that has supported our family in the Apraxia Walk today - those that donated, bid, and/or purchased items in our auction. Those that were thinking of our family today. And, those that walked alongside us. I took plenty of pictures, but they'll be posted later. Tonight, I want you to know we appreciate you. We appreciate you more than I can express, really. THANK YOU!

I meant it. The auction we held was very successful - thanks to Felice (pictured above) for initiating it, the many donations made, and to the bidders!  I know many family & friends weren't able to physically be there to walk with us, but I appreciated all of those who reached out to let us know they would be making a donation, or would be thinking of us.

And, at the end of what turned out to be a very long event, I asked Patrick to take a picture with me.  I often thank everyone who supports our family, but don't often take the time to thank him directly.

Thank you Patrick!

With the support of all of you, our total Team Hansen donation to CASANA was $766.00!  Thank you!

One-step-at-a-time.

Walk for Children with Apraxia of Speech

3 words. 3 boys.

Apraxia of Speech.
Just as I say I have begun to ACCEPT this, it hits us again.

3 boys.

What are the odds of every child in a family having this condition? I can't find an answer. Primary Children's Medical Center told us, at Ryder's diagnosis, they have not treated a sibling set. Most articles, blogs, and research I find online suggest it is not common to have multiple children affected.

Yet, here we sit.

Before I get ahead of myself, Harvick & Jarrett have not been diagnosed with Apraxia, it is just "suspected". At their Early Intervention assessments, they each tested average, or well above average in all sections...except one. Verbal expression. Their cognition, gross motor, fine motor, self help, and social/emotional skills are within typical (or above) range. However, each of the boys scored dismally low on verbal expression. Patrick & I knew this going into the appointments, we fully anticipated the results, yet, I couldn't help but feel sadness when the results were presented to us.

There is still the possibility that Harvick & Jarrett just have delayed speech. They are the youngest. They are boys. They have an older sibling willing to do things for them, and each other, with whom they are able to easily communicate. It may just be a delay.

Whatever it is, we will face it head on, together. We have tools, resources, and support. We have the most amazing SLP who is willing to work with all 3, when the time comes. Early Intervention has qualified the boys to participate in Speech (like Ryder did), and we have been assigned a therapist who will meet with them twice monthly.

And, speaking of support...I'd like to invite each of you reading to take action with our family. The Childhood Apraxia of Speech Association of North American (CASANA - you can even "pronounce" the acronym - "cuh-sauna") has a walk in support of Apraxia. All money raised goes back to CASANA - supporting research and furthering the education of this diagnosis (more specific details HERE).

 
More Apraxia Walk information:
Where: Bountiful City Park
When: Saturday, April 20th
Length: Approximately 2K (runners take about 20 minutes, walkers take 30-40)
Cost: $20/adult, $10/child (children are not required to be registered, but will only receive a T-shirt if they are).
*You must register by March 24th in order to guarantee you will receive a T-shirt in your size.

I do know the cost of the event can add up, especially if you have children. I know it's in Bountiful - a bit of a drive for many of you. If it would work for your family, we would welcome the support of you joining us. Walking with us. But, for those of you whom this is not a possibility, for any reason, there is no pressure. We know that you walk along side of our family "in spirit".
For more details about the walk in general, you can go HERE. 

And, to register, you can go to our TEAM HANSEN page HERE.

If anyone reading is interested in making a financial contribution, without attending the walk, the website does allow for this as well.

Thank you. Thank you. Thank you.

This is the shirt for this year's walk...tell me it's not meant to be - the shirt color is GREEN - Ryder's color!

One-step-at-a-time.

Apraxia of Speech . Follow-up

I promise this blog will return to a more-picture-less-words blog soon!

Sometimes I have to take time to process things.  And, since publishing my year update last week, that is what I have done.  Process.

I can't tell you, those of you who reached out in person, through Facebook, or email, how much it means to me.  I know it means a lot to Patrick also - but, he's not quite as sappy as me!  It means we are supported.  That you may not know what daily struggles we face, but that you are there.

Through the blog, and Facebook, I've learned just how many resources I have through friends. 

I am grateful for these people, amazing friends, that have reached out to offer their advice, suggestions, and just support in general.

I hope these blog posts, ones in which I write about my feelings, my thoughts, my struggles, don't make you feel bad for me.  I find comfort in being able to record these things.  And, I pray that maybe there is someone out there, whose child has been recently diagnosed, who is searching for someone that understands them right now.  The fear.  The frustration, the anger.  The unknown.  In December 2011, I spent countless hours each evening searching.  I found many blogs and websites that discuss the therapies they've encountered, and the progress (or lack of) their child has made - but nothing with the feeling. 

The support I received through writing this last post, led me to contact a friend who reached out to me a few weeks prior.  She and her husband are worried for their daughter.  They are seeing signs in her, that she remembers me sharing about Ryder.  She felt lost.  Lonely.  And, didn't know what she should do.  I gave her all the info I could via text.  And then, I had left it at that.  I didn't want to bug her about it.  I worried I would be a pest.

But, the day after hitting publish, I texted her again.  I asked how the next steps had gone, and what I could do to help.  Her first text back to me: Thank you.  She thanked me for taking the time to follow-up with her.  She was lonely in this journey.  I felt a kick in the gut for that - I KNOW how lonely it feels.  Yet, I still questioned my next step.  It was because of the response I received from the post that led me to follow-up.  I realized how much it had meant to me to feel supported, and decided to do the same for someone else.

Finally, in a response, to someone who reached out to me, I told her what writing this last blog post reminded me - I do have support.  All around me.  I just have to take the step to seek it - like my friend did with me.  

You are part of our support network.  And, for that, I can not thank you enough.

From 09/01/2012 - Fun in the bathtub!
(Harvick, Jarrett, and Ryder)

One-step-at-a-time.

Apraxia of Speech . 1 Year (Week 45-54)

367 days ago I published a post.  This entry has been brought up to me, in person, more than any other that I have written.

The day I hit "Publish" on it, I cried.

If I'm being honest, I cried for what I thought I was missing.  What I felt was stolen from me, and even more so Ryder.

I made many who read the post cry too.

Apraxia of Speech.

3 words I still wish I never knew.  3 words, when linked together, were life-altering for our family.  3 words I have grown, with time, to accept.  And, maybe even appreciate.  Maybe.

367 days ago I wrote about Ryder's diagnosis.  At that time, we had been through several months of frustration with our local hospital and school district.  The SLP diagnosing him had me feel infinitesimal in size when I brought up those 3 words at Ryder's evaluation.  My heart hurt for my son.  He had done nothing to deserve this.  Nothing.  Yet, we were facing what felt like a long, lonely path.  My writing reflected this, I believe, between the lines.  I didn't write about the way I was treated when Ryder was diagnosed - I stated she was kind.  She was kind to Ryder.  Not to me.  I didn't write the near battle it was to get Ryder to been seen the first time by the school district months prior.  Or, the many failed methods suggested to us to get Ryder to "stop being lazy" with his speech.  Or, really, the heartache.  In looking back now, I see it written in every line.  And, between each line.  It wasn't my intent.

But, 367 days later I hope what you read between the lines is hope.

Ryder has completed a full year of Speech Therapy.  It's been a road with many curves and bumps, but we've navigated it together as a family.

Almost immediately it was clear that PCMC was not a good fit for Ryder.  But, we (more me) pushed it.  PCMC is world-renowned for their work with children.  World-renowned.  What I failed to see is that it's status made no difference to my struggling son.  The therapist was easily frustrated with Ryder, and he was even more easily angered with her.  She primarily worked with children a few years older (which makes sense, seeing as Ryder was the youngest child to receive the Apraxia diagnosis by PCMC).  Her patience level would wear thin quickly.  

At the time, Ryder was attending a Montessori School two days/week.  His teacher had let us know earlier in the year that the school worked with a Speech Therapist company, and a specific SLP came into their school weekly to see students.  We declined at the time, but made the call to get more info just weeks into the PCMC therapy.

And, although this blog is personal, it is also public.  We'll call this new SLP "S".

S has been a blessing to our family.  Beyond words.  I recently sent her boss a review of our near year of therapy. I wish I was a better writer, as I am sure I failed to convey my full thanks for her.  If asked, I am positive that S would say that it is Ryder's effort, and the effort Patrick and I make throughout each day.  And, she is correct, but she fails to see just how immense her role plays in his success.  My son has the ability to communicate.  He can express his feelings.  He can say "me no know da word" when he knows what his is thinking, but can not physically say the word.  He can SAY that he doesn't know the word.  SAY it.

Also at the time I first wrote about Apraxia, Ryder was being seen twice monthly by the Early Intervention (through our school district).  Following the diagnosis from PCMC, we had nothing but great experiences with the SLP.  It was as if she needed the confirmation of a diagnosis to do things differently than she was "supposed" to.  It took us awhile, but I would say that Early Intervention played a key role in Ryder's success as well.

When Ryder "aged out" this summer, the therapy from Early Intervention stopped.  He qualified for the district's Special Ed Preschool, and attends 4 days/week.  It's hard to quantify his improvement directly related to his attendance, but we are happy to have him there.  Ryder has an awesome teacher, whom he loves.  He is in an environment of peers who also struggle in some area of their development.  Many are more severe than Ryder, in different ways.  In this environment, Ryder has learned how to better communicate with children.  I place credit with the school (over daycare, home or church) because it is there that he has to problem solve most frequently.  He has the opportunity to interact with differently-abled children, which has made him more aware.

So, 367 days later.

This year has been hopeful.  As we were able to make the right connections for Ryder, he was able to begin success.  Ryder has a long road, still, ahead of him.  He is still, in many aspects, behind his peers in verbal expression.  The truth is, he may always be.  But, we are hopeful for his future.  If he can go from 2 words (ball and "ba-woon" (balloon)) to no longer being able to count the words he can express, what can he do in a year more?

Ryder will continue in the Special Ed Preschool through this school year (he will likely no longer qualify next year - both a blessing and a curse - for another post).  He will continue his therapy with S, and decrease slightly in the coming months, as S prepares to welcome a third baby into her home.  He will get a full month "off" from formal sessions, before going back to S regularly (and, her willingness to take only a month off makes me forever grateful).

Now, our concern shifts to encompass little brothers.  Harvick and Jarrett are nearly 20 months old, and non verbal.  They babble.  Constantly.  But, have no words.  We see in them the same signs we saw in Ryder.  PCMC had told us, upon diagnosis, they have never treated a sibling set for Apraxia of Speech.  This, combined with being boys and being multiples, gives us a slight chance they just have delayed speech. 

We have made the choice to not pursue speech intervention with them yet.  We know (very well) basic speech therapy techniques, and use them with the boys regularly.  In the coming months, if their non verbal state remains, we will begin the process over again.  Only this time, we have hope on our side.
Thank you, YOU reading this, for being a support to our family.  I know that "only" have a speech issue seems insignificant in the greater picture, and it is, but in the moment, it is hard.  And lonely.

For those of you that interact regularly with our boys, just as it was 367 days ago, you should continue.  Encourage words, even if none come.  Require they make an attempt, even if it is very far from the correct sound. 

Finally, 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. 

Apraxia of Speech is a challenge, but one that we will overcome.

Their new bedtime routine (hence the sleepy eyes) includes running over to their growth charts to check if they have grown since the night previous.  It is likely one of the cutest things ever!
(Ryder, Harvick, and Jarrett)

One-step-at-a-time.

Apraxia of Speech . Week 41-44

It's been nearly a month since my last weekly Apraxia of Speech post.  It's not been for a lack of time (although, I'm short on that, for blogging, often).  It's been due to, ironically enough, a lack of things to say.  Originally, Ryder was getting weekly assignments from his PCMC Speech Therapist.  Then, as we moved to the private SLP, the format of his therapy changed.  Ryder was given weekly things to work on, but we have moved away from the effort put to just one sound, or word.  This is, in part due to a different therapist, and also due to Ryder's progress beyond just learning a single sound each week.

In the past month, we continue to see Ryder progress with his speech.  He is making more attempts with putting words together in sentences.  Yet, he is becoming more and more stubborn with not changing the way he initially pronounced a word (ie, "bown" for "down").

Patrick and I attended (with Ryder) Ryder's first Parent-Teacher Conference at his Preschool.  Ryder's Teacher, S, had nothing but great things to say about Ryder.  He is doing great in her classroom, and she states she enjoys him.  Ryder had to adjust to the routine, but was able to do so quickly - his biggest hurdle was with cleaning up - something he now does without question!

The school's SLP, A, had some not-as-great information to share with us.  She believes that Ryder should not be in the Preschool.  Clearly, you're reading my point of view, so it is definitely bias - but, to us, A's wanting to move Ryder out of Preschool doesn't make sense.  The logic behind her statement is that Ryder as an immense understanding of vocabulary.  He understands single vs. plural; past, present, and future tense; etc. Ryder also uses adjectives when describing something.

THIS IS NOT NEWS TO US.

Ryder has never (NEVER!) struggled with comprehension.  At a very early age Ryder was able to follow multiple-step directions.  He could complete puzzles intended for children several years older, with no issue.  Ryder has a great memory - he is able to recall where he left something (toy/book) days, and even weeks, later.

A states that the intent of the Preschool is language.  This means the understanding of language, not the verbal expression of language.  She feels Ryder should be removed from the Preschool, and put in a "language only" program - resulting in a 20 minute session (during school hours...time off work) every week with Ryder, a SLP, and me.

WE DO NOT WANT THIS.

We have seen Ryder improve, in more than just speech, since attending the Preschool.  We attribute this to him being around other students who struggle with something - not all have verbal expression delays.  This leads to them being a little more understanding, more patient, with each other.

I'd like to preface this by saying we love Ryder's daycare (the one he attends just one day/week).  However - I have walked in to pick him up, often hearing another child tell Ryder how they don't want to play with him because he is a baby, and can't talk.  The teachers do address this when they overhear it.  We have no doubt that this isn't an all-day occurrence   BUT, IT DOES HAPPEN.  Children don't have a filter on their thoughts and feelings.  But, at the Preschool, each child is struggling with something, and tend to have a more patient attitude toward their peers.

In the end, through much discussion, we have requested testing be completed with Ryder.  A's opinion of moving him from the school is based solely on observation (and discussion of the observation).  There are no test results to review.  We have also requested that the speech test be evaluated by an additional SLP - at this point, it means A will record Ryder during the test, and have another (school district) SLP score Ryder.  We also have an AMAZING private SLP who would be more than willing to complete the testing, or to evaluate a recording.  Finally, there is a questionnaire part of the test - Ryder's teacher agreed with us, that we should have multiple forms completed, by people who spend time with Ryder on a regular basis, especially in a speech-promoted, or a peer setting.  This means us, his babysitter, the daycare, and his SLP.

The school has no timeframe for this to be completed.  It's been a week and a half since the conference, and no forms have been sent home.  While I want to follow through with the testing, I've decided to let it's timing play out, as the school sees as appropriate.  I have still requested weekly communication about his participation and cooperation in class...but, I won't be asking questions about the test until I am told it's progress.

So...right now...we wait.

Ryder, with his SLP.

As I've said before, a "good" session with Ryder includes many different activities in order to keep him engaged in participation.  The pictures above were taken over a period of less than 5 minutes.

Name Spelling

Patrick and I are constantly looking for ways to incorporate Ryder's verbal expression into any activity we are doing.  One, of the many, ways is spelling out the letters in his name (hung above his bed, as seen at the end of this old post) every time Ryder is getting dressed for the day, into his jammies, or when we are in bed at night praying with him.

Ryder can now spell his name easily, although he still struggles saying it.

Also, we are constantly pointing out letters (from any word) to him, and having him repeat us.  This serves two purposes: 1) teaching him letter recognition, and 2) practicing his verbal expression enunciation.

Maybe 2 months ago, while walking into a store, Ryder stopped in the middle of the parking lot, pointed toward the store, and said "hay (k), o, h, l, s - mom, whats that?".  Honestly, it took me a second to connect what he was doing.  His letter recognition has always been exceedingly high, but his verbalization of the letters previously only came with our encouragement.

Then, one night, as Patrick prayed with him, Patrick asked me to come into Ryder's room.  Ryder was trying to say something, but Patrick didn't recognize it.  "wywer".  We made multiple guesses and asked him to say it in a different way, but after no success, I told him I was sorry that I couldn't figure it out.  Within a few minutes, Patrick called me back into the room - he asked Ryder to tell him another way again.  Ryder pointed to his wall, and spelled his name - "r, y, d, e, r - WYWER!".  He was trying to say Ryder.  In the past few weeks he has improved the beginning "r" sound, but still struggles with the "d".

Last night, in the bath, he started searching for letters...and did this all on his own!...

When Ryder realized he only had one "R", he moved the first one to the end in order to complete the spelling.

Ryder would repeat moving the "R" from the beginning, to the end, and back again.

Ryder may not be able to vocalize his thoughts, but this was a good reminder that his little mind is a sponge - he may not repeat sounds/words, but he understands everything!

Apraxia of Speech . Week 40

This week, for the first time, I reached the point where I told Ryder to STOP TALKING.  Without trying to sound too dramatic, I wondered if this day would come.  I've always believed Ryder would be able to speak, but it has been, and continues to be a long, hard road.

Ryder is expressing himself more and more verbally.  He still struggles with saying the correct sounds within words, and struggles with many words completely.

But, his increased verbal expression is really a great improvement.

His Speech Therapy this week went well.  He gets fixated on the trains, and sometimes struggles with cooperating with his SLP.  As I've said many times previously, we are so incredibly thankful for his SLP - she doesn't give up, or get frustrated, she just moves with Ryder at his pace (which, is a very fast pace!).  Ryder's worst session with his SLP is better than any session he had at PCMC - our 4 month "review" of Ryder's situation is an easy one.  We will continue with his SLP, and not pursue therapy through PCMC.

I forget what this activity is called, but Ryder is working on saying the words on each "flashcard", then upon saying it correctly puts it in the correct place (they have velcro).  The sounds in the second words builds upon the first word...bee, beat; A, ape; etc.

Apraxia of Speech . Week 39

Ryder did well again in therapy this week.  We practice as we drive to the library about how he will act.  I think he is better understanding he has control of his emotions.

Ryder was definitely more interested in playing with the trains, than he was in doing his speech work, but with some coercion he will a willing participant.

At the SLP's request, Patrick and I added to his "frequently used" vocabulary list.  This list is the words that Ryder says, or would like to say, regularly - but, that he is unable to correctly enunciate.  As we added, I decided to organize the words a bit more, removing previous words that he now can say without issue - it was quite insightful!  Ryder really is progressing.

I was able to get in contact with Ryder's SLP at Preschool - she says he is willing to cooperate, and make efforts to produce the sounds requested.  His current goal will be to work on the "b" sound.

TOP: The SLP puts her hand up to stop the trains from continuing across the bridge.  Without her insistence, Ryder would be content with not speaking, and just playing with trains!

BOTTOM: Ryder intently listens (and practices) as the SLP shows him the new worksheet she has for him to use this week.

 

Apraxia of Speech . Week 37 & 38

The perfect storm of getting ready for a yard sale, having the internet go out, and 3 babies with 101+ fevers last weekend led to limited blogging.  So, you get 2 speech updates in one!

Ryder has been having an increasingly difficult time leaving Speech Therapy each week.  Ryder loves (LOVES) his SLP.  And, the fact that she brings him trains and tracks is just icing on the cake.  Until, he has to leave before he is finished playing.  Thankfully, the SLP is more than patient with him, and his antics.  But, it is wearing.

We've been coaching Ryder throughout each week, and especially as we drive to Speech Therapy.  And, today, he did awesome.  He definitely didn't want to help clean up the tracks, but cooperated willingly.

09.06.2012

LEFT: We got to Speech Therapy a few minutes early, and shared a muffin from the library cafe.
RIGHT: Ryder, adding to the train tracks, as he works with sounds/words using an iPad app.

09.13.2012

Ryder doesn't really know personal boundaries all that well, luckily, his SLP is used to this (with 2 young children herself).  Here, he is playing with his trains while participating with the iPad app.

Ryder's speech is making improvements.  We hear him saying more words on his own, without us prompting him more frequently.

- Ryder is very observant as we drive (and can even tell you where to turn to get to certain locations!).  In November(?) he started saying "geen, go!" when the traffic light would turn green.  We've worked, for months, for him to say "green light, go", then adding "yellow, slow" and "red, stop".  It's slow, but it's an easy repetitive activity when we are in the car.  As I drove him to daycare this week, he told me "Mom, go, da (the) wight (light) is a geen (green) arrow".  I've never heard him say arrow, and I can't say that I've encouraged him to try.  But, the innumerable times that Patrick and I have told him that we are turning because it is a green arrow has paid off!

- When Ryder is looking for a specific toy, we encourage him to look for it on his own, and if he can't find it, we'll help him retrace his steps.  Often, I will say "(item missing), where are you?!" as we walk around.  Recently, Ryder was looking for his juice cup (often stolen by his brothers), and I asked him to look for it first, and I would help him if he couldn't find it.  He walked away, saying "o-hay (okay) mom, JUICE, WHERE ARE YOU???".  All words that I know he can say, but never strung together like that, especially without prompting.

- As we read the boys a bedtime story (or two!), Ryder has started to mimic what we are saying as we read the story.  Sometimes it is one we read often, other times it's one that is rarely pulled off of the shelf - his willing imitation is incredible.  Getting him to parrot a sound, let alone a word, took MONTHS.  Now, he's often doing it without prompting.

One-step-at-a-time.

Apraxia of Speech . Week 36

Ryder will be continuing his Private Speech Therapy throughout the school year, even though his Preschool will focus on increasing his verbal speech.  Ryder's SLP and I were prepared for a rough session today, as he was supposed to receive his first one-on-one session at Preschool, with A, this morning.  Speech Therapy is difficult for Ryder, and two sessions in one day has proven difficult in the past.

But, Ryder did an awesome job!

Ryder went back to the new area (that we tried last week) with his SLP, while I went to the bathroom (TMI? - sorry).  When I walked back there a few minutes later, he was already playing with the trains and train tracks the SLP had brought with her.  They were reviewing personalized flashcards on her iPad, and he was participating without issue!  He definitely was sidetracked frequently, but was able to be pulled back into the speech exercises.

Now...leaving without taking the trains or train tracks with him...was a bit difficult...but, I'd rather struggle leaving than during the session!

Despite his participation, I only took one picture - I was happy to just watch today as he participated!

When Ryder would lose focus on the exercise at hand, his SLP switches activities - the picture shows Ryder excited to see his newest flashcard, "tunnel", while he still has a hand on the trains/tracks.  The flashcards in front of him were used when he tired of the iPad, and the puzzle to his left when he wanted something different.

One-step-at-a-time.

Apraxia of Speech . Week 35

This week, Ryder was introduced to his new SLP, at the Preschool...more on that later...

Today, he had Private Speech Therapy.  We tried meeting in a different area of the library, and he did really well with the change.

Tangent: A co-worker of mine uses the word "wicked" to describe things she likes, enjoys, thinks are cool/amazing/awesome, etc.  Today, when she used it in conversation, I realized what a good word - albeit a bit strange - it is to describe something...

Ryder's SLP is wicked awesome.  She is so great with Ryder.  I feel like I say it often, but I don't know how to adequately describe how appreciative Patrick and I are of her.  Ryder can be difficult, especially when he is asked to do something he has to work hard at to complete.  Talking, although it seems like such a natural thing, does not come easy for him.  It takes an immense effort from him to talk.  He has to concentrate to produce the correct sounds/words.  And, the SLP works with him through it.  She incorporates his love (infatuation?) for trains.  She encourages his attention to return to her by engaging him in activities, and before he realizes it, he is participating - WHILE he is playing.

No distinct progress to report this week.  Looking at his speech week to week can be difficult, in that there is rarely notable quantities of progress in such a short span.  It's when we look back a few weeks, or months, that we see the change.

I do greatly enjoy when I can capture a moment of therapy in a picture (even if it is just with my camera phone).  Speech Therapy is now, and will continue to be, such a big part of his life.

This week, the flashcards became a train tunnel!

One-step-at-a-time.

Apraxia of Speech . Week 33

A week off from (formal) Speech Therapy - Ryder's SLP is out of town, with her family.

Not much of anything to report this week.  Ryder is initiating more speech, which is always encouraging!

---

I showed Ryder a friend's baby announcement, his response:
"OH MOM! Its-uh seet baby!" (It's a sweet baby).

Randomly, when he is playing quietly (usually with trains, of course):
"I hop (jump) at Oh-wen's (Owen) home"

While STOPPED at a train crossing, on our way home:
"WHOA MOM! Da boo hain has ICE CEAM inside!" (The blue train has ice cream inside)
Not sure, why he thought this...but, it led to a fun discussion of what might be in the other trains...white was milk (which makes sense, as one of the SLP's trains is white with "MILK" written on the side), green was chickens, orange was juice, and black was bananas!

Ryder slammed his thumb in the door at his Grandma Jody's house.  A few nights following, after praying with Ryder, as Patrick was leaving the room:
Dad, pay for my humm, holding his thumb up (pray for my thumb)
Patrick: Your thumb?
Ryder: Yeah, dad, my owie.

---

He still has a long way to go, but it is nice to note the progress he is making as well.

One-step-at-a-time.

CASNA