The King's Speech! (Well, Jamesie's Speech)

I've been going back and forth on whether to write this post, and have waited a while to do it, but here goes.  If you have seen us in person lately, you will undoubtedly notice (a) our children are amazingly cute, (b) Sean is constantly talking, usually asking "why..." and (c) Jamesie is not talking at all.  In all respects but one, Jamesie is a normal 2 1/2 year old boy.  He is sweet, especially to his Mama (OK, so Cody describes it as being a "mama's boy"...and I'm OK with that for now), protective of his baby sister, engulfed in anything that has to do with a train or a truck, stubborn to a fault, and mischeiveous with the most endearing "I'm too cute to punish" smile.  However, when he turned 2 last April, he had no words.  I thought he had a few words, but at a speech evaluation I was educated that those were actually "word approximations," and he in fact has no words.  By the time summer started, I had never heard him say "Mama" or "Mommy."  In his evaluation at 2 yrs 2mo, the Lady asked me if he could say two-word phrases like "my brother," referring to Sean.  I told her that if I heard him say a two-word phrase I would probably fall off my chair in shock. 

After a few evaluations and way too long working the state-bureacracy red tape, we were finally assigned a speech therapist.  A few of our cousins had gone through speech therapy at this age, so we thought this was just par for the course and they would have him up and talking in a few months.  Our speech therapist looked at Jamesie for about ten minutes and said she thought he had Speech Apraxia, which is a much more involved disorder than just being a "late talker."  Apraxia, for short, is a neuro-planning disorder in which the brain has a difficult time sending the message to the mouth to communicate.  It takes a LOT of planning which most of us don't ever have to think about to talk.  Kids with apraxia have a really hard time making sense of all the planning that goes into every sound and syllable, and then stringing them together to make words or sentences.  I'm not sure if this is accurate, but the way I think about it is this: Normal kids learn how to talk.  Kids with apraxia need to be taught how to talk.  So, 6 months in, we are teaching Jamesie how to talk. 

Here is the good news about this situation:
- In all of Jamesie's evaluations, he is cognitively on track with other kiddos his age.  He is smart. 
- We have a wonderful therapist, Mollie, whom Jamesie responds awesomely to. 
- With the apraxia diagnosis, we get Mollie twice a week at our house!  She has become a welcomed staple in our home Tuesday and Thursday (and sometimes Saturday!) mornings. 
- Because I like the idea of baby sign-language for any baby, I taught Jamesie (and Sean) sign language from a very early age.  They both started using their first sign around 6-7 months ("milk").  Jamesie has picked up sign language so well.  By the time he was evaluated at around 24 months, I had made a list of over 60 signs he used regularly.  He had even started using two-word phrases in sign (the first I remember, before he turned 2, was when a little girl got up in church to go to the bathroom.  Jamesie signed with a questioning look to me "baby, potty?"  I answered, yes, she is going to use the potty!).  Many kids with Apraxia aren't taught sign language until their first therapy session.  Jamesie had the language-equivilent in sign language of where he was supposed to be with spoken language (50+ words, starting 2 word phrases), which proved that (a) he was cognitively understanding everything, and (b), he can make his hands say the words he wants to say, he just can't make his mouth say the words. 
-He is making AWESOME progress.  He has so many new words lately, its amazing.  He says "Mommy," and when we tuck him in at night he says "Love you."  He says a ton of other words too.  And, while he's not trying full sentences yet, I have heard him try a two-word phrase here or there, although nothing regular yet.  The first time I heard it I almost did fall off my chair--except I was nursing Sissy, so good thing I didn't.  Cody was reading him a book at bedtime and he kept saying something, over and over.  Finally I heard it, and yelled from the other room, "Three bubbles!  Three bubbles!  he's saying three bubbles!  Oh my gosh, do you hear it!?  He's saying three bubbles!" 
- One of our stated goals, which we are told is completely reasonable, is to have him kindergarten-ready by age 5.  Jamesie works so hard right now and has made so much progress, I have no doubt he can do it!
-We "caught" his apraxia on the early end, at 2 yrs 2 mo.  Some people don't start therapy until 3 or 4 years old.  Early intervention is the best chance at success, and getting started just after 2 is on the early end.  I am forever grateful I kept pushing our pediatrician and stuck with it through all the red tape. 
- Our family has been awesomely supportive.  Everyone works with Jamesie and respects that he CAN understand everything, he just can't get words out sometimes.  My Aunt Anne is a speech-teacher in Albany public schools and was so supportive with phone calls and encouraging notes/texts/emails when we first got his diagnosis.  The diagnosis is pretty overwhelming sometimes, knowing that we will be at this with him for many more years to come, but having a supportive family around you eases the burden a lot.

There are definitely some challenges that come along with this diagnosis, which we have to acknowledge, but I try not to dwell on (cody might have a different perception about whether I dwell on the challenges).  One of the symptoms of apraxia is choking.  The diagnosis explains to some degree the four times we have had to give Jamesie the Heimlich for full-airway blockages, and the 2 911 calls.  While its good to figure out what is going on, it is completely unnerving knowing it could happen again at any time.  I think the most commonly heard phrases in our kitchen are (a), "You need to cut that smaller for Jamesie," and (b), "Jamesie, use your teeth.  Show me your teeth."  I would say I probably watch him eat 90% of his bites, and eat most of my meals with a low-level constant anxiety in my stomach.  If I leave him with a babysitter its usually mac n cheese and applesauce.

Yes, there are social situations and educational challenges to keep in mind.  He can't answer someone in the grocery store who asks him how old he is, and he can't tell another kid on the playground or at a birthday party his name.  He finds it easier to play with his trains by himself than to "talk" to other kids. Our home is strewn with flashcards and word games. When he starts talking regularly, it will be hard to understand him and we'll still have to work in therapy to get the sounds right. We'll have to coordinate his speech services with Sean's kindergarten next year, and once again navigate the bureacracy of special needs in this state.  But, people have gone before us doing this.  Someone has those things figured out, and it will work out.  He is developing into a beautiful, precocious, stubborn, compassionate little boy.  He has a beautiful heart and soul and for that we are ever grateful.

And, one thing we have learned about our two year old, is that he's an incredibly hard worker!  It's hard to sit through session after session of therapy, and its hard to not be able to say what you want to express, but Jamesie works so hard at it!  Here are some shots from the last few months to prove it:

Sean often works on Jamesie's words with him.  It's so cute and they both do so well. 

Sean says he is a good speech-therapist.

Here is Jamesie working on his words all by himself.  He's so good.  He will often find his bag of words and get them out by himself, and I will find him like this, or hear him in his room practicing his words. 

Jamesie and Ms. Mollie working on a pumpkin craft before Halloween.  He loves his lessons with her, and on days she's not here is constantly asking for her.

Daddy and Jamesie working together on a Saturday morning. 

When Emmy was here for Sissy's baptism she did a whole lesson with Jamesie.  She had read a book about Apraxia that my speech-teaching Aunt Annabelle had, so Emmy actually had a pretty good working knowledge of apraxia when she came down and was glad to work with Jamesie!  Jamesie responded really well to Emmy and opened up and practiced his words with her.

Maybe because Emmy was non-threatening, or because she didn't demand he speak, but waited for him, listened to him, and was patient with him, Jamesie showered her with affection and snuggles all weekend.  When you hit Jamesie's sweet-spot the rewards are wonderful!

 

So, the take-home from this post is (a) Jamesie is awesome, beautiful and amazing; (b) He will be kindergarten ready in 2 years, and (c) If your mommy gut is telling you something is wrong, push your doctors and get answers early.  Early intervention is the best medicine! 

 

To learn more about Apraxia, check out the Childhood Apraxia of Speech Association of North America: www.apraxia-kids.org