Monday, March 28, 2011

Apraxia

I've been wanting to blog about this for a long long time.  But haven't wanted to until our special meeting that Hayden and I had today...

First I should give a little background on how our "special meeting" with some new friends came to be...
I have been REALLY worried about Hayden's speech for a long, long time.  He has had chronic ear infections when he was about 1 year, he had tubes, got more ear infections last Thanksgiving until about the middle of January.. the poor kid has my terrible ears.  He is doomed to have ear infections.  I worried that he would be delayed because of all the infections.  If you can't hear, you cant learn to speak.  But he's always passed hearing tests and he still wasn't talking.  He would babble up a storm.  Telling me all sorts of things, it's just none of it was actual words.

At 20 months I had him evaluated by our ECI(Early Childhood Intervention)Program here.  He knew 5 words: mom, dad or "das", this, is, yes, and 2 or 3 random animal sounds, and about 35ish sign language signs.  Our case worker said he was very, very smart and verbally he wasn't delayed but at the low end of where he should be.  He needed to have a 6 month delay to qualify for speech therapy services.  So with the hopes in the next few months his language would pick up, we moved on and waited.  I tried swallowing the idea that he would talk when he was ready and his speech would come.

But...a few months went by and no change.  We prayed and fasted that he would start to talk and that Cory and I would know how to help him.  In February I really wanted to get him evaluated again.  I could not shake the feeling something was wrong.  Soo many people, including his old Pediatrician, said not to worry about it.  That many kids, especially boys(I HATED when people told me that) were slower to talk and he would catch up.  That I was worrying to much because he was so young I shouldn't push it.  But that same sick feeling in my stomach said no...it's something else.  I have an AMAZING ward, and fabulous friends here in Texas(we are so blessed!).  My friends here have heard me venting my concerns(sorry guys, I'm sure it got annoying) about Hayden's speech and told me about a cute lady in our ward was a speech therapist for a school district in Austin.  The very next Sunday we were introduced to this cute lady, Sister Wenger(who is now our bishops wife), and she talked to me about Hayden.  It felt so good to know my concerns were valid and she offered to come evaluate Hayden for me for free!  When I had called other speech therapy clinics JUST an evaluation is $300-$350. Yeah, ouch.

Sister Wenger came and was so cute and sweet with Hayden.  I don't know if she will ever really know how much I appreciated her coming and how much I love her for being so willing to help Hayden.  She busted out all her books and toys to test Hayden.  He thought it was grand!  He loved showing off how much he knew, and he adored the one on one attention.  He tested until he got bored of pointing at pictures and all of the other test questions...but Sis. Wenger said he tested up to a 3 1/2 year old's level.  I was even surprised at how much he knew and some of the questions he was getting right. He probably could have kept going if he wasn't so bored with it.  Hayden is smart.  Really smart.  Which I knew, but I didn't realize he was THAT smart.  Receptively(meaning he can point too it or hand me whatever it is) he knows all of his colors, shapes, body parts, some letters, under/on/off/etc, he/she, mine/yours, cause and effect stuff, problem solving...I was shocked.  But expressively, or verbally there is a huge gap.

This is when a new word entered into our vocabulary:
Apraxia

It was so gratifying to hear Sis Wenger say that she thought he was apraxic! That he did have a speech delay.  That my gut feeling was right.  Honestly it was a giant "I told you so!!" to the world kinda feeling.  She gave us a lot of info about apraxia and some numbers to call to get him into some speech therapy.  After she left the panic set in.  I started reading and learning about apraxia, and the more sick it made me.  Hayden does have a speech delay and will need help.  Probably for a long time.  I know that worse things could be wrong with him.  But I didn't want my baby to struggle.  

"Childhood Apraxia of Speech(CAS) is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder."http://www.apraxia-kids.org

So basically Apraxia is like any other "motor disorder." If a kid was having a hard time walking, skipping, etc they would need help with gross motor skills.  If a kid was struggling cutting with scissors and holding a pencil that would be fine motor.  With Hayden, it's his oral motor skills.  His brain is telling him to say words, but his mouth can't plan and form how the words will come out.  Which is why dad sounds like: "das." He cant form that last "d" sound on dad.  Which is why when he talks it sounds similar to words sometimes but a lot like baby babble too.

Since I went with my gut he should catch up verbally before he starts school.  But there could always be certain sounds he struggles with.  Each kiddo progresses differently.  Since Hayden is so smart and learns quickly hopefully he will catch up sooner than later and not struggle once he is in school.  Early intervention is best and we caught his delay super early. Thank you mothers intuition!

Today we FINALLY had our meeting with his new case worker and his new speech therapist.  I had been telling Hayden that we would be meeting "new friends" today to try and prepare him so he wouldnt be so shy.  And he did great.  He warmed up quickly and was his usual busy, silly, self.  Im glad they could see him in true Hayden form :)  We have goals set for him and I am excited to see him progress.  It was relieving for his speech therapist to tell me Ive been doing everything I could have done to help him. Because me, being me, felt guilty, like it was my fault he wasn't talking.  Silly, yes.  But that's how I felt.  As of today he knows 40-50 different signs.  I was so relieved to hear that teaching sign language to your kids is one of the best things you can do. But especially if they have a speech delay.(so teach your kids sign!)  Which I knew teaching him sign wouldn't delay him, but when he still wasn't talking I started doubting myself.  Signing is how we communicate mostly.  We also have a picture book that Sister Wenger made for him.  So if he wants something that he doesn't know the sign for he will go and get his book and point to whatever it is that he wants.  He says: mom, das, is, this, there it is, yuck and animal noises: moo, rough, quack, monkey sounds and rawr!


Im so so excited to see him progress.  He and I have been having MAJOR communication breakdowns lately.  He knows exactly what he wants and how he wants it, it's frustrating when I don't get it.  Like when he wants milk in the dinosaur cup and I thought he wanted juice in the lion cup.  He cries and tantrums. I cry.  It's awful.  But we are getting better at understanding each other :) Some days are harder than others but we are getting there.  Some of his new goals are just practicing imitation. He has never been able to do that.  He has never copied me saying "uh oh" or "bye bye."  So first we are just practicing coping basic sounds.  Then we will go from there :)  I will blog about his progress probably a lot! For our own record and because it's exciting and I am already so proud of him!

It has been a long road to get to today.  I feel so so blessed and grateful.  I know that Heavenly Father answers prayers, and that He knows better ways to answer them than what we think we need.  I am so grateful that Hayden is a healthy, happy, smart boy and that we all get to learn together with this experience.  Im grateful for the blessing of "mother's intuition," and that I felt like I needed to look further into his speech delay. 

So moral of the story: Always be close to your Heavenly Father so you can get promptings from the spirit that are life changing.  There is power in prayer.  Mother's intuition is freaking sweet. :)

7 comments:

Lizzie said...

It is so hard. What a blessing that sweet sister at church is. I hope he makes great progress in his therapy. What a good mommy you are.

Matt, Erin, and Ben said...

Megan, you are such a good and sweet mother. Hayden is so lucky to have you. :) Good luck with his therapy. I'm excited to read about his progress. He sounds like such a smart boy!

erin d. said...

You are fan-freaking-tastic. Way to go Momma instincts! Hayden is so lucky to have a momma who is so invested in him. Hayden is going to rock speech therapy with you as a cheerleader.
Love you Megan!

Jessica Havican said...

I am so glad that you are being taken care of by your ward members. What a nice thing for that lady to help confirm your intuition. Hayden does sound like a smart cookie and sooner or later his speech will match that. He is so lucky to have a mom like you that is aware of his needs so that he can get the help he needs sooner rather than later. I'm sure he will be talking your ear off before you know it!

Jeff and Ashley said...

You are such a good mom. I am glad that you are on top of being a mom and know what is going on with your kids. Blakelee has been a little behind with speech too and I took her to a speech therapist and I thought we were going to have to do speech therapy but one day it just clicked for her and she is doing so much better (still behind but making good progress). I hope that Hayden is doing good in his speech therapy- he sounds like a great kid! How could he not be with you as his mommy!?! :)

Heidi said...

It's the motherly instincts! My mom always said that ;) Sounds like you are in great hands and surrounded by a lot of helpers & supporters! You are such a super cute mom!!

Trissy-T said...

Megan, I miss reading your darling posts and seeing pictures of your adorable family! Hope you get back into the blogging routine again soon! I've been there, It's hard to get back into the swing of things once you've been out. Hope all is well with your adorable family!