Saturday, March 2, 2013

Apraxia

On my last "Dominic" post, I expressed my feelings about what we've been going through with his speech delays and it felt good to let it all out.  I don't know what it is about journaling and blogging but it's a different type of expression.  I'm just better at writing my feelings down.  A blank piece of paper is my preferred canvas.





So, Dominic's speech therapist, Megan, wanted a one on one meeting with me about a week after the school conference we had a few months back.  We picked a day, sat down together and she brought up something that I had mentioned my MIL saying to me some time ago, she said,  "Angela, I feel sometimes that we did something wrong w/ Dominic too.  I hear my friends talk on the phone with their grandkids and I think, I didn't do that and I should have even though he didn't talk back, at least he could listen."  Do you have any idea how hard my heart sank into the pit of my stomach? I wanted to cry, SHE thinks she did something wrong too.  It's not just the parents that go through these emotions, it's the grandparents too.  Not that I ever thought that this is just our problem, but I had no idea my MIL felt this way.  So Megan hands me a healthy looking packet on something called, Apraxia.




"Apraxia is a neurological speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). It is also known as apraxia or apraxia of speech. The severity can range from mild to severe - completely non-verbal. It is often times of unknown orgin."


"Verbal apraxia is present at birth. It is different from a child who is speech delayed. A child with a speech delay develops speech in the same manner as a normal child, they just do so at a slower rate. It is not something as simple as "their sibling talks for them" or they are stubborn. Children with apraxia do not have the motor planning skills to properly pronounce words.
By between ages 2 - 3 years of age, children are generally diagnosed. Before that it is often just considered a speech delay. The main symptom is the lack of developing speech. If you are concered you should speak to your child's physican. They should screen verbal skills at their well-child check ups. If they suspect a problem they can refer you to a speech and language pathologist skilled in working with young children in your area."



Megan and I talked about it for a bit then asked, "How are you feeling right now?  Are you ok?  Was this too much?  I didn't want to give this to you last year when you first came because I didn't want to upset you or overwhelm you."  To put an actual name other than "speech delay," it was a hard pill to swallow, not gonna lie, BUT had I read the above in the beginning of this journey, I would have lost my shit.  I told her that I appreciated the information, this meeting, her, the teacher and this school.  I truly was ok.  Ok fine maybe I cried a little, but not hysterically.  I wasn't ok before because no matter how many people said to me, "I told you he'd talk." or "You guys are great parents, you didn't do anything wrong."  My feelings are my feelings.  I can't change them and it's not like I wanted to beat myself up over it, but I'm his mother.  It's my job to know what he wants and I wasn't doing that.  

At this point in the game, Dominic is just a talking machine and we are loving every single minute!  No, we don't want him to shut up, no it's not annoying...it's fucking amazing!  No one is happier than Matt and I right now.  NO ONE.  Dominic tells us exactly what he wants now and the frustration level in the house is pretty much non-existant.  Our weekends aren't filled with guessing games and stress anymore, they're filled with sounds of an almost 4 year old talking, talking, talking and holy shit is he funny!  I can go on and on about the things that fly out of his mouth, but we'd be here all day!  Oh ok, fine, I'll give you one ;)  The other morning, Dominic woke up on the "wrong side of the bed" & was a little crabby.  We went to the bathroom to go potty and says to me, "No light mom, take off!" So I turn off the night light.  Later that night he goes potty before bed w/ Matt and he asks Dominic, "What happened to your nightlight?"  D gasps and says, "Who diit?!"  Matt asks, "Who turned it off D?"  Dominic yells, "Mommy diit!"  I yell, "You told me to this morning remember?!"  Dominic says, "Oh yeah! Sawwy mom." :)  Bwaaahahahahaha!!!



It wasn't until my office manager stopped me from "translating" Dominic one day that I realized we were also underestimating our son.  It kills me to know that that's what I've been doing, underestimating him. You guys have NO idea what it was like behind closed doors with this shit when we were in the thick of it.  When I say that toys were literally being thrown at my face, they were.  There were days I was home with him all day and the frustration level was so high that as soon as Matt would come home, I'd leave.  I remember one night, Matt came home at 4:30pm and at 4:31pm I was in the car heading to wherever!  I remember going to the McDonald's drive thru, getting an order of large fries, a large diet coke, sitting in the parking lot alone, stuffing my face and just sobbing because I'd lost my temper w/ Dominic.  I lost my temper with him, like it's his fault that he can't talk right?  Asshole mother of the year is what I felt like.  Again, I am supposed to know what my son wants and what he needs and sometimes I didn't know and that's when the toy would come flying at me.  I would be angry too, I would throw shit too if someone couldn't understand what I was saying, especially if it was my mom and she should know. 

Other mom's around me were enrolling their kids in stuff and I wouldn't because I was afraid that Dominic wouldn't understand or he wouldn't be able to express his feelings the "normal" way.  I forget where we were or what play area we were in but a little boy walked right up to Dominic and started asking him questions and wanted to play with him.  I stood back to see what Dominic would do and he just looked at me as if to say, "I want to play with him, but I don't know what to say."  I then looked at the little boy and said, "Sorry honey, he doesn't talk much but you can still play with him."  He ran off and I heard him say to his mom, "He doesn't talk mom!  I can't play with him!"  Do you realize how heartbroken I was for my son?  He wants to play, he wants to run with the other kids but can't communicate with them.  I can't even begin to imagine how much that fucking sucks. 

When we were in Sicily, all the kids were playing hide and seek, granted they were speaking a completely different language and he didn't understand, but he didn't play with them and no one asked him to play or showed him.  He sat on my lap and we watched them play.  I couldn't take it anymore so I took him to our room, shut the door and we played "Angry Birds" on my phone.  Underestimating Dominic is something that I shouldn't do, especially now, but even with things like a simple song, "Wheels on the Bus" for example.  Every kid should know that right?  Well, I never really sang it to him or taught him because well, he didn't talk.  I never really ran through letters or numbers with him, because well, he didn't talk.  Trust me, I feel like an asshole right now admitting all of this but all I wanted out of life was for Dominic to speak that I didn't care about all of that shit.  My mom joked while we were in Sicily and asked if we were teaching Dominic how to speak Italian and I said to her, "Uma, he can't even speak English right now, let alone Italian!" and we both laughed but it was true.  How am I supposed to speak Korean to him and teach him how to speak English without confusing the utter fuck out of him.  Yes, I realize that children right now are sponges and this is the time to expose him to it, but at one point I felt like we weren't doing him any favors by speaking other languages in the house.  My first language wasn't English, it was Korean.  I was born here, in the US, yet I had to be taught how to speak this language because I had "fresh off the boat" parents who didn't know a lick of English either.  They eventually were relying on me to translate shit for them.  As I say all of this, I'm thankful that Dominic is doing all of this now and not later in life to go through what I did.  I'm shocked I never went through an identity crisis and you think I'm joking.  I'm not.  I live the US, with off the boat parents who were teaching me the "Korean" ways yet I also had to learn the "American" way too.  See, that shit has identity crisis written all over.  ANYWAYS.....

Now that Dominic is in school and is flourishing, singing "Wheels on the Bus" with him in the car is like my most favorite thing do with him.  Yesterday, as we passed "Dominick's" he yelled, "Daddy! Das ma names! Up der! D-O-M..."  Matt had to pick my jaw off the floor and I cried! He recognizes letters, he just pointed out his fucking name!!!!!!  I know now, that I shouldn't have "held him back" so to speak, but it's a fear and that motherly instinct to always want to protect your child.  I'm sure that by the time he starts school full time he'll be fine but I would think, "Oh God what if he can't talk and can't make friends and kids pick on him?"  Again, you have no idea the shit that used to run through my mind.  My point here is, he's doing everything that he's supposed to do by himself now.  He changes his clothes on his own, puts his jacket on, even put his freaking snowsuit and boots on by himself a few days ago!  He even plays hide and seek like a champ!  It's little things that most of us take for granted but not us.  It's the little things that are making a HUGE difference around here.

Last weekend, Matt said to me, "Have you noticed that our days with D have been SO fun because of how much he talks now?"  When I said that no one is happier than us that he's talking....yeah, kinda lied.  My in laws are too, especially my FIL.  He was the quiet worrier.  It wasn't until Dominic started at home therapies that my FIL told me how he was feeling about all of this and it was pretty much how I felt about it.  My FIL was never one to show any emotion until he was diagnosed with cancer.  When it comes to his grandson, he's fucking mush.  You should see his face light up when he's telling me what Dominic said the other day or what funny thing he did to make him laugh.  Depending on the mood and what story it is, I can catch his eyes well up with tears of joy. 



"People come into your life and people leave it...you just have to trust that life has a road mapped out for you."

Orlando Bloom


Not only is Orlando Bloom a hottie, he's right.  In my life, I believe that everything I do, everyone I meet has a purpose.  I am thankful for all of my super supportive friends and family, but when someone is actually going through the same thing that you're going through it's just a little better.  I don't mean to sound ungrateful to the people that have been there for me with things we're going through with my FIL or even with Dominic's speech delays, but it's reality, that someone who's been there, does truly "get it."  Which leads me to mention my friend Tina :)  I just had Dominic and I came across a friend request from a Tina on Facebook.  I had NO idea who she was, didn't even recognize the name but saw that we had mutual friends.  I hit decline and went on my way.  She sent another request a few weeks later and I was like really?  I don't know you!  I asked Matt if her name rang a bell...I see the wheels turning and then, liiiiiightbulb!  He knew her from his high school days, so I messaged her and I'm so glad that I accepted her friend request. 

Tina, getting to know you through messages and becoming your friend has been a blessing not only for me, but for Dominic as well.  Who knew that speech delays would keep us connected!  We were meant to be friends and for that I'm grateful.  Without your guidance through all of this, without your advice, without your friendship, I'd have gone ape-shit crazy and you know I'm not kidding when I say that.  You've "talked me off the ledge" many times, even made me laugh about this and most importantly kept me sane.  We may not talk on a regular basis or hang out much, but when we do we all have SO much fun and I cherish the friendship we have and hope it continues for years to come.  You would always tell me Dominic would be fine.  You praised me on how patient I am with him and I would think to myself, "Hmmmm, maybe I am a good mom.  Maybe I can handle all of this, maybe I am doing an ok job."  You have to know that you are just as great of a mother to Caden.  He's the sweetest little boy and I'm so glad that Dominic can call him his friend.  I see what you do with Caden and how you speak to him and I have learned so much from you, you have no idea.  So with this said....thank you Tina, just thank you.





As far as the Apraxia is concerned, Megan said that there is no test for it to truly diagnose a child or any studies, no medication or a "cure", it's just something that is and what Dominic has.  Of course, it doesn't define him by any means, I know that.  Dominic isn't Apraxia and Apraxia isn't Dominic.  Our son is hilarious, he's sweet, he's kind, he's adorable and he's smart.  Going through all things that come along with a speech delay wasn't easy and we do still have our moments but nothing like what they used to be.  I have to continue to remind myself that things can be so much worse and overall he is a happy and healthy little boy.  I can finally say that I'm proud of us, I'm proud of Matt for being patient with me through this and especially proud of our son for making the strides that he has.  I will be forever grateful to this school, his teacher and his speech therapist.  He has one more year there and then that's it.  I will be a basketcase the day he's done there- a flipping basketcase.  I love, love, love when someone who hasn't seen Dominic in a while say to me, "I can't believe how much he's talking!"  Everytime someone says that to me, a little bit of that heavy weight from before lifts a little bit and inside I beam like the proudest mother on the planet.  Our hard work is actually working. 

I love the sound of his little voice.  We can finally hear our son, finally speak to him, not at him.  When I walk through the door after a shit day at work and hear him running to me, gasp and say, "Mommy here! Missed you mom!"  That right there is the shit, the best moment ever and I cry as I type it out.  I've been waiting years to hear him and it's music to my ears.  When I'm upstairs getting ready or something and I hear my boys downstairs laughing, I stop, sit at the top of the stairs and just listen to them talking to each other.  I sit, listen and cry.  I cry tears of happiness because getting him to this point was hard work.  I cry tears of happiness because all of that hard work is paying off.  When Dominic says something new all I want to do is scream in happiness and he sees it too.  He sees how proud I am and the smile on my son's face because he knows, is all the reward I'll ever need. 



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