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  • Her first “favorite”

    Her first “favorite”

    Kids always seem to have a favorite flavor of the week. Parents probably promote this. What is your favorite color? What was your favorite animal at the zoo? What was your favorite candy you received on Halloween? What is your favorite TV show, movie, toy, food, dessert etc etc. if Ashlynn has ever been partial to anything, we have never known, until last weekend.

    We went on a mini vacation basically planned around kid activities. Who knew that becoming a parent would also drastically change your idea of a dream vacation! We went down to our favorite Embassy Suites. There is a separation of the living room and bedroom so we can put our kids to bed and still have some quality time together, free happy hour for the parents, and free hot buffet breakfast for picky kids who have their choice of anything and everything to eat at no cost to us!

    A pool for free swimming and hot tubbing is a bonus, and it’s next to a bunch of family friendly places, like the Cheyenne mtn zoo. Oh, and it’s also next to kid friendly restaurants like Old Chicago and TGI Fridays.

    Coming back from the zoo my husband and I were full of “favorite” questions. “What was your favorite animal Ashlynn?” “Did you have fun?” “What was your favorite part?” She didn’t really answer. As we got closer to the hotel, she inquired, “Where we goin?” We answered back to the hotel….and that’s when we heard it. We heard her first favorite anything in that moment when she was 4.3.

    “Yes? That hotel’s my favorite!”

    My husband laughed and verified, “That hotel’s your favorite?”

    “Yeah!” she replied.

    He turned to me and said aloud what I was already thinking, “That was the first time she’s ever said anything was her favorite!”

    I don’t think many parents with of typically developing kiddos remember what they said was their first favorite. I don’t know my 19 month old sons yet, but I also am confident I won’t be waiting two more years to hear his favorite anything. With Ashlynn though, we just have always wanted to know her thoughts, her dreams, her fears, her favorites! We knew she liked that hotel as she has been to it at least four times prior, but hearing it was her favorite was just something special that’s hard to describe. It’s like we finally get to HEAR these things in her own words, and not just from her smile.

  • If we don’t say we’re scared, does it mean we don’t have fears?

    If we don’t say we’re scared, does it mean we don’t have fears?

    Ashlynn almost drowned…twice. Okay, maybe I’m being dramatic, but that’s how a mother feels when a lifeguard has to jump in and save your child.  The first was during her first ever swim lesson and the second was during a random winter session her Grandpa took her to.  Both times she just walked off the toddler platform as though she could swim, and both times a lifeguard had to dive in a save her.  The first time, she seemed to have forgotten the incident just as quickly as it had happened; but the second left fear, only apparent from her refusal to get in or go near the water two months later.

    She never told us she was scared, though we asked and she would nod her head yes. In fact, come to think of it, my now four year old has never told me she was scared.

    I remember parts of being four.  I was afraid of everything.  Currently, not much has changed. I’ve always been afraid of things. I hated the typical things like monsters and ghosts, but clowns and mascots always freaked me out too.  It struck me that though I can tell Ashlynn is afraid now of swimming, she has never told me and that makes me sad.

    We always say we want to know their hopes and dreams, but what about their fears? Fear is a human condition. Facing fears is one thing, but kids need and look to parents for reassurance.  How do you reassure your child though, when you don’t know what they need reassuring on?

    The family took an impromptu, much needed weekend getaway.  After taking Ashlynn to her swim lessons and watching her be afraid to even step in the water, my husband was excited to go to a hotel and practice her swimming.  Ashlynn was doing SO good with swimming last summer, even blowing bubbles and getting her face wet.

    Ashlynn acted excited to go swimming.  Kept talking about the pool and asking if we could go swimming.  However, once there, she wouldn’t come in despite my husband’s gentle prodding with arms outstretched.  If he went to grab her, she’d pull back and start crying.  I got in the pool and tried.  I saw the fear in her eyes.  “Are you scared Ashlynn?”  I asked, and she would cry and say, “yes”.  I’d tell her that I’d catch her, but she’d still cry and shake her head no.  I finally said, “Baby, I won’t let you fall, ok?”  Immediately I saw the fear leave her eyes and she verified, “yes?”  Realizing her fear was that she would fall, I said again and more confidently, “Ashlynn, I will NEVER let you fall” and then I said a quick prayer as fear gripped ME, that in every situation the Lord would guide my hands so that I would indeed never let her fall.

    She extended her arms and swung them around my neck and we entered the pool together. I kept reassuring her that daddy wouldn’t let her fall either and she went on to jump into his arms, do her back floats, and blow her bubbles.

    One day I know she will express her fears, and as her mother, I will always be here to reassure her, protect her, and just love her.  For now though, I’ll continue to do what all mothers who have a child with apraxia do…anticipate their needs, give our best guess at their desires, and express their fears for them until they have a voice to do it all on their own.   

  • Her little heart of gold this Valentine’s Day

    Her little heart of gold this Valentine’s Day

    Went to Ashlynn’s Valentine Party today, and was so encouraged!  The SLP informed me she has moved out of the cube chair and is now sitting up front by the teacher with reminders to sit criss cross applesauce.  Watching her with the other kids warmed my heart, although I could see how her core seemed much weaker than her peers.  Her back was slumped and she kept having to lean back on her hands for support.  Her focus was better though, not great, but better!  I have to hold onto this because other reports were not so positive. If you are interested, you can read about one of my struggles here: She really does have special needs

    Other great news: The SPED teacher informed me she is doing fairly well counting with 1:1 correspondence, and during an activity where the kids had to say a sentence, Ashlynn stood up proudly and said her sentence fairly clearly after the teacher modeled.  The teacher then sang a song twice.  Ashlynn was engaged and smiling.  When the song ended, Ashlynn said loudly, “DO AGAIN!”  The teacher moved on anyway, but it made me smile.  She really seemed like one of the kids today!

    I did start to notice when she lost focus.  She is distracted by people.  She wants to know what’s going on.  She’s making sure everyone is ok.  At one point, a peer was crying and she could not take her eyes off her.  During dancing, that same friend wasn’t dancing and Ashlynn came up to her side and danced beside her.  She would hold her hand out as if to say, “I see you.  You matter.  I don’t want you to be sad.”  During the dancing activity, Ashlynn moved from peer to peer.  Laughing with them, engaging them with her smile, not her words.  She was always usually pretty successful.  A person laughing genuinely and having fun doesn’t leave many sour faces  in their wake.

    Toward the end of the dance, she ended up next to her BFF.  I know it’s her BFF because she talks about this girl all the time, and the girl and her hug when I pick her up from school.  Today though, I got to glimpse into their world.  Ashlynn grabbed her hands so the girl’s attention was on her, and just made silly faces and laughed.  The girl couldn’t help but laugh along with her proclaiming, “oh Ashlynn, you are so silly!”  They then would jump and dance together!  I can’t tell you how happy I am that she has a friend.

    It’s hard to imagine that just a year ago, she wasn’t even talking to her peers in class.  I just can’t believe the difference a year makes.  I wish I could go back and tell that mother that everything really WAS going to be OK.  Next year, she would not only talk to kids, but she would have a best friend.  Next year, she would be participating in class, repeating modeled SENTENCES.  However, the sweetest part is that she is still the same sweet Ashlynn with a heart of gold; and I wish I could tell my old self a year ago.

  • First professional CAS presentation

    First professional CAS presentation

    I stood waiting 30 minutes early to enter the room.  The room where I would present information on my personal and professional experiences and knowledge about Childhood Apraxia of Speech for the first time at a professional conference.

    As the door opened, people started clammering for a seat.  I looked around thinking to myself, “are they sure they know they are coming to see me?”  I took my place at the front and started to set up my power point presentation.  My cousin, and SLP from a neighboring school district found me and gave me a much needed hug and wished me good luck.  It wasn’t long before the room was so full that the side door had to be opened.  People asked me if I could request more chairs.

    I started to feel sick and any hunger feeling I did have during this brief lunch break was long gone.

    Soon, people crowded in and just sat on the floor.  They sat in front and in back, and pulled up chairs in the back and side hallway.  I found my mentor in the hallway and leaned on her shoulder proclaiming I was about to be sick.   With a reassuring pat she sent me back in ordering I save her a chair in front.

    Soon the announcer came up to introduce me.  Nervously I chatted with him stalling for time.  As he said my name I experienced an almost out of body experience.  I heard him in the background, but I thought of Ashlynn.

    I thought of the two boys I had treated with apraxia before her, and how they came to me nonverbal in Kindergarten. I suddenly remembered that I’m giving this talk so that another child with apraxia doesn’t have to wait longer than they have to to find their voice.  To say their name.  To tell their parents they love them, or even call their parents by name.  I realized  I have an audience of well meaning, awesome professionals who wake up each morning and help children find their voice and I have first hand experience and professional experience on how to help them make that happen. It was clear from the number in attendance that they want to know more; so, with a big breath I began my presentation drawing strength from my little ones with apraxia who have to be braver than me in that moment,  EVERY moment of their young lives on their journey to find their voice.

    If the email inviting me back for next year is any indication, I hope I did them all proud.

    A link to my presentation is here: Importance of Differential Diagnosis and Treatment Approach in Childhood Apraxia of Speech

  • Did I cause her apraxia?

    Did I cause her apraxia?

    It starts with a question: 
    Did I cause her apraxia?  I know I’m not the only mom to wonder this, or worse, believe this.  This is where the guilt sets in.  It set in early and would tap on my shoulder in the shower, at lunch, or when I was trying to go to bed.

    Even though I’m an SLP, and I tell parents all the time that the speech delays are not their fault, I still felt like somehow I must have done something wrong.  Maybe my C-Section had something to do with it.  Could it have been the petocin, the pain meds, the stress? Maybe if I had only taken my pre-natal vitamins more strictly and just dealt with the fact they made me sick.  Then, after she was born, maybe I didn’t talk to her enough.  Maybe I didn’t give her enough attention.  Maybe it’s because I went back to work and she was sad her mom wasn’t there full time.  Maybe it’s because I talked to her TOO much.  I was trying TOO hard to make her talk she never had a chance to just be herself.

    Ugh, enough already!  It’s exhausting to feel this way.  It’s exhausting to go through every scenario in my mind wondering if there was something else I could have done, not done, tried to do.  She has apraxia and the truth is, there is nothing I could have done to prevent it.

    I know it’s not my fault, but….is it really not my fault?
    Now, I just have to believe this. That’s the hard part. I’m not alone because I read stories almost daily on my support group page of parents wondering if it was the c-section, should they have breastfed or breastfed longer?  Was it the food they ate, a cold they got, a toxin they were exposed to……the list goes on.  Theories with no basis that mothers will beat themselves up over.  Well, I want to tell you to stop it.  I know it’s hard, I know it’s still in the back of your mind, but if our thoughts become our truths, then this thought process is a cancer.   Further more, it doesn’t matter.  It doesn’t change the fact your child or my child has it.  What does matter are our actions right now to make it better.  To fight for our child and help them through it.

    How I actually banished the guilt
    I have finally shed my guilt over it, and the credit is due to my son.  My typically developing son who is so eager to be older and to grow up.  He learns things and picks up things without me literallymighty doing anything.  He is 18 months and already sings his ABC”s.  I have NEVER worked on this song with him. That’s how easy talking is supposed to be.  Despite my daily dose of the alphabet song with Ashlynn well into her third year, she only could sing it at 3 1/2.  My son, on the other hand, picked up the iPad, listened to it on repeat for a couple days, and started singing it.  I remember watching a video on facebook of a friend’s  2 year old when Ashlynn was the same age and crying thinking what a bad mom I was.  This little girl was younger than Ashlynn, singing her ABC’s and I’m supposed to be an SLP no less and still my little girl wasn’t singing it.

    Last night we were eating noodles for dinner.  My four year old with apraxia kept resorting to using her fingers, and I kept prompting her helping her to use her fork.  It’s hard to pick up spaghetti noodles that need to be scooped rather than stabbed.  I briefly looked back at my son in his highchair, and he was not only scooping up the noodles like a pro, but he was stabilizing the bowl with his other hand to steady it.  I looked at this situation in awe.  Again, I have maybe once showed my son how to scoop with a fork instead of stab, and here he was, doing it as well, if not better, than Ashlynn.  That’s how easy it’s supposed to be.  He picked that up without any special help from me, and even after years of practice with Ashlynn, she still has a hard time.

    I start to realize even more, her progress or lack of progress or slow progress is apraxia’s fault.  It’s not my fault or her fault.

    This morning I was asking my kids what they wanted for breakfast.  I threw out two ideas to my son and he shook his head and said ‘no.’  I have never taught him the word no.  I never had to teach him that instead of stomping his feet and throwing a tantrum, he could simply say, ‘no.’  He just does it.  There was a time that the child throwing tantrums instead of saying ‘no’ was my daughter at 2 1/2.  Myself, my husband, and my mother-in-law literally had to tell her for months to stop and say “no.”  Yes, that happened.  I actually had to teach a child to say “NO.”  Chances are if you have a child with apraxia, you have been there done that.

    If you are a mother and are looking for something to fault, then I suggest you personify apraxia and fault the disorder.  It’s not your fault.  You hear me?? It’s NOT your fault.  Even if you have two kids with it, it’s still not your fault.  Stop the guilt.  Stop the obsession with trying to figure out why your child has it.  It doesn’t matter anyway.

    I say this to you again as a parent AND an SLP; talking should be easy.  Though it is a highly complex skill that parents only fully realize when they see their child struggle, a child should talk regardless of what you did or didn’t do.

    I just want to say one more thing.  I think parents get the message that it’s their fault when the SLP (myself included) gives them suggestions for home.  These suggestions might be to make their child grunt or make some type of sound or word approximation everytime they want something.  Don’t let them get away with saying a sound wrong that you have heard them say correctly in therapy.  Don’t let them point and give them what they want when they can say a word for it etc. etc.

    I want to tell you we say these things not to fault you.  Parents of typically developing children didn’t make their child talk.  Their child just naturally did so.  Don’t listen to your family member, or well meaning friend or whomever, tell you it is your fault because you never made them talk.  Children don’t have to be made to talk.  I really  BELIEVE this now with my son.  My pivotal moment occurred when I realized I have never made him talk.  He talks so much I can’t make him stop talking. In fact, the one time I did try to teach him a word I was trying to get him to say “Jake” when requesting the show “Jake and the Neverland Pirates,” since Jake would be easier to say.  Well guess what?   He didn’t say Jake, he said pirates instead and has continued to do so.

    So there you go.  I am the same mom, the same SLP I was with him as I was with Ashlynn;  and I am here to tell you I tried my DANGDEST to get her to talk.  I did everything I knew how to do as a professional.  Guess what though?  She has APRAXIA.

    Yes.  Apraxia.  I’ve channeled all that guilt and blamed it on Apraxia.  I wish you the same!