SLP Mommy of Apraxia

Tag: Ashlynn update

  • I saw the light go out in her eyes

    I saw the light go out in her eyes

    I saw the light go out in her eyes as she floated buoyant, but motionless under water. Her eyes staring out in front of her.

    I wish this was the beginning to some fictional novel, but instead it’s what happened today at swim lessons. This is on the heels of great success in swimming I just wrote about last week Good teachers change lives
    If you know me, it’s no secret I have an over active inhalation and freak out whenever I think my kids are getting hurt, but today this was no false alarm.

    I’m shaking typing this. As a mom, sometimes you have to keep it together and find strength you didn’t know you have to reassure your child even when you know you will fall apart.

    I was sitting poolside about 20 feet away behind the red line so “lifeguards can do their job.” Two life guards keep watch on the side, and as I’ve mentioned before, Ashlynn has had to be rescued twice.
    Ashlynn is getting more comfortable in the water. She can stand in it, so she’s been venturing out more with the other kids to do her head bobs and bubbles while the teacher does individual instruction.

    I have to watch my little man too who is good but active wondering around a play structure they have there. I looked at the water and Ashlynn was underneath doing a head bob. I turned away to make sure Jace was in view. I looked back to the pool and Ashlynn was still under water. She was struggling silently and I saw her trying to reach the top of the water with her chin, but because she was freaking out she wasn’t putting her feet down.

    I ran over.

    “Ashlynn!” I screamed.

    Other parents stepped forward. The lifeguards were still talking.

    I looked over at them while crouching poolside and screamed, “someone help my baby!!”

    The lifeguards didn’t move. I looked back at Ashlynn and, and, ugh…..I can’t get this image out of my head.

    She stopped struggling. She was in a sitting position under water staring into nothing. I jumped in and pulled her out. I patted her back and looked at her blue lips. It was probably only a few seconds, or maybe even one, but it seemed like an eternity and then she started coughing.   Then she cried and I have never been so relieved in my entire life.

    I wanted to cry tears of anger, of relief, of joy, but she was so scared I had to dig deep. I didn’t yell at the lifeguards (though the pool will be hearing from me), and I put on a smile and told her it was okay.  Even after this, the lifeguards casually looked over asking “what happened?”

    Josh her instructor came over and was incredible. He put on his big smile and reassured her for close to five minutes. We both knew she had to get back in the pool, because if she didn’t she might never go back in.  He and I coaxed her back.  I hear his voice and I don’t know what he said but it was soothing to me so it must have been soothing to her.  He made her smile.

    I happened to look back and it felt like a dream. Parents had their hands over their mouths. I see them in slow motion. They almost witnessed a tragedy…..and the tragedy was MY daughter. Another parent told me that’s why she always sits on the side of the pool regardless of the red line. I hear her voice as muffled confusion. A grandmother told me she’s had to save both of her grandkids last year. Her voice is just jumbled confusion.

    All I can see is the light that left my daughter’s eyes.

    Ashlynn has had a Mormon blessing and a Catholic baptism, and I know she was saved today.

  • Ashlynn summer speech therapy 3.9 years

    Ashlynn summer speech therapy 3.9 years

    Ashlynn received two grants to help with her speech and occupational therapy over the summer!  The United Health Care Foundation and the Lindsay Foundation made it possible!  I am so grateful.  Ashlynn will be back to getting intensive 1:1 speech and OT services.  

    As far as speech goes, Ashlynn communicates her wants and needs.  She has basic conversational skills and really does try to tell us what happened in her day.  Sometimes when she’s talking, I see my husband look at her with pride in his eye and I know what he’s thinking.   Even though we don’t always understand what she is saying, it is amazing to listen to her talk and try to tell us things.  She was silent for so long.  
    I love her speech therapist.  She was actually my mentor and is now one of my good friends.  She’s fun, but I also know she’ll push her.  However, I also know she’ll find the deficits and the continued deficits are hard to be faced with and make me sad.  I want to write it down though, because if I know anything about Ashlynn, I know she’ll overcome it.
    – She has significant word finding issues.  Sometimes, she needs so much wait time that eventually she even forgets what she wanted to say and moves onto something else.  
    – Her attention continues to negatively impact her progress
    – When something is hard, she changes the subject and tries to talk about something else
    – Auditory processing skills such as auditory discrimination between minimal pairs (sleep, seep) appear to be impacted.  
    – Grammar, including marking varying tenses and using s/v agreement along with pronoun usage are faulty
    – Syntax is jumbled, particularly for question forms
    – Still has a tendency to assimilate sounds she knows how to say (goggy/doggy), and continues to be inconsistent with her production of consonants in her repertoire (koys/toys). 
    – Needs continued work with /l/ and /r/
    – Continues to breakdown with novel multi-syllabic words
    – Receptive language skills continue to need monitoring
    That’s a long list, but I have to remind myself it used to be longer.  She’ll get there.  I know it.  There was a time I worried if she would ever make friends because she couldn’t talk to them.  Here she is at the splash park talking to perfect strangers and making friends.  One step at a time.
  • Good teachers change lives

    Good teachers change lives

    What a busy month!  Life definitely doesn’t slow down just because I’m off for summer break!  I signed both the kids up for swimming lessons.  Ashlynn would be in the Guppy class for probably her 5th time, and Jace and I would be in the parent/tot class.

    I decided that since it was the first day, and considering Ashlynn’s aversion to water now following two traumatic pool events, here: I would stay on the side with Jace and watch to make sure she was ok. I realize now it was totally irrational, but I guess I was expecting she would have her same instructor from last year and she would be off and running.  She sure was excited at the thought of going swimming.  I snapped this photo while we were waiting for them to call off the classes.  Doesn’t she look excited?

    I have to admit, when they called off her instructor, he looked like he was 12.  Okay, not really, but he was young, new, a little hesitant himself.  Ashlynn refused to get in the water.  She cried hysterically as fear gripped her whenever they even mentioned it.  Another little boy in her class had autism, and his mom had to literally sit on the side and hold his arm or he would go swimming off under water, and another little boy had no desire to listen or follow directions.  I actually kinda felt bad for this kid as much as I did for Ashlynn.  He was in waaaaay over his head!

    Week two, Ashlynn would let him take her out to practice skills, but she either had her arms gripping his face, her neck up, or her knees pulled to her chest.  She also refused to stand in the water and would only sit on the side of the pool.  It literally broke my heart.
    There were some cute moments though.  When it was time to stand on the edge of the pool, she would hold the little boy’s hand who had autism and talk to him and repeat the directions.  He never looked at her, but he seemed to listen and his mom seemed more than grateful.  Ashlynn was the only child to talk to him and she was the only person beside his mom that he would let hold his hand. I just thought, “Well that’s Ashlynn.  Maybe she isn’t here to learn to swim.  Maybe she has a bigger purpose.”  Even though I was proud of her, my heart was still sad.  I lamented to my husband that I felt that she was actually worse than when she started swim lessons last year because now she wouldn’t even get in the water.  
    We tossed around private lessons and decided to do it.  I heard the instructor of my parent/tot class saying she and another instructor were the only two current certified staff.  I figured I’d go with her and had her write her number on the back of the card.  That was Thursday.  
    On Monday, Ashlynn started her new two week session.  I just figured she would have the same boy, and I thought, well, maybe it’s best because at least she knows him.  However, I was surprised when they put her in “Josh’s” class.  I had seen Josh since last year.  He normally taught the older kids, or so I thought.  I would marvel about his amazing teaching ability and how his kids would respond to him.  I wished he taught the younger kids, but I had never seen him do so, until today.
    Ashlynn went shyly with me holding her hand.  Instead of my usual speech of “Even though Ashlynn doesn’t look like it, she has special needs and has a motor planning disorder that affects everything from her speech to her gross motor skills, so please keep an eye on her because she has had to be rescued twice” I said, “You teach little kids?  I only thought you taught older kids?”  He seemed surprised and said that was weird because he usually only teaches the little ones.  
    I stepped back with Jace and turned around to see Ashlynn red faced, freaking out not wanting to get in the pool.  He put her in anyway and then bent his head in and said something to her ear.  I have no idea what he said, but she stopped crying.  Before I even knew it, I was in tears on the sideline watching her not only stand in the water but blow her bubbles and do her head bobs.  I sent text messages to my husband.  
    When I looked up again, I saw this:

    Full back float, head down, arms AND legs out relaxed, and trusting Josh.  She has NEVER, EVER, done this with anyone.  I looked on stunned and snapped another picture.  When she started to tense up, he leaned his head into her ear again and told her to trust him.  He told her he had her, and when she did it he gave her the biggest hug.  

    Tears flowed.
    To see the pride on her face, the confidence in her smile, the sparkle in her eyes….he did this in ONE day!! 
    And what I realized was, I actually didn’t care about the swimming.  I mean I do, but I was more proud of her being proud of herself.  He gave her confidence, he instilled a sense of accomplishment in herself and that is what being a teacher is all about.  He made her WANT to learn to swim.  
    Good teachers change lives.
    In this journey in apraxia, I realize and learn over and over and over again, that maybe we have to know the darkness to truly appreciate the light, and the light sure shone on us today.  

  • For once I went to school, and I heard only positives

    For once I went to school, and I heard only positives

    Let’s face it.  Being a parent is rough.  Whether you have a child with special needs or not, we all want for their happiness, that they will feel successful, that they will be confident, and that they will never hurt.  Of course we know that without trials they cannot fully appreciate the successes, without sadness they could never fully experience complete happiness, without hurt they simply wouldn’t be human. 

    School has been an absolute blessing for Ashlynn, my social butterfly.  She never let her limited speech hinder any of her relationships.  In fact, her first word was ‘hi’ and it was all she needed.  She could and still can engage anyone with that simple word and her beautiful smile, and they are hooked. 

    But

    That’s why it was so hard to go to IEP meetings, parent teacher conferences, and get reports from her teachers and therapists.  No matter how many positives were relayed, we always sit there waiting for the

    But.

    She is so happy and works so hard,

    But

    She is friendly, sociable, and loving

    But

    She is an absolute joy

    But

    I’m not gonna lie.  The “buts” hurt.  It really doesn’t matter if they are framed around 100 glowing adjectives, the “buts” can be overwhelming.  Especially when for one child she needs a

    speech therapist
    occupational therapist
    physical therapist
    special education teacher
    social worker

    They all come with their own set of “buts.” 

    Today though was different!!  Today, her last day of Pre-K, there were no “buts.”  Today, as I picked her up, I heard this:

    Teacher: “I have been blessed having Ashlynn is my class.”
    Social Worker: “Ashlynn is the sweetest, kindest child. She is friends with everyone, and everyone is friends with her.”
    Another parent: “My son told me this morning he was really going to miss Ashlynn. When I asked him what he would miss, he told me her laugh.”

    It just brings tears to my eyes. There’s no standard score or percentile for that….but if there were she would be way above average. 
      
    Ashlynn is my sweet, kind, loving, daughter who blesses those around her with her smile, her laugh, and her friendship.

    No buts about it.


  • To say your name

    To say your name

    Most people might take for granted their name. You have a name, you’ve always had a name, and basically that’s that.  Kids with Apraxia have a name too, and they know it just like you.  There is, however, one difference.  Many can’t say their name at first. Can you imagine?  How many times are little children asked their name?  It’s basically the first question strangers ask them right up there with how old they are.

    Every child deserves a voice, and every child should be able to say their own name. A name is not only your identity, it gives a symbolic representation of YOU.  A verbal representation of letters and sounds that come together and allow you to say YOU are YOU. A name carries history, geneology, and meaning to the carrier.  It’s so important, that even if one vowel in someone’s name is mispronounced, the offended will quickly correct the offender. Just recently in the news, John Travolta mispronounced Idina Menzel’s name when introducing her at the Tony Awards read here and she reported that it threw her off for like eight seconds and she had to give herself a pep talk saying “stop worrying about your name and sing this song.”

    So…needless say.  A name is important.

    I remember back to the early days of speech/therapy.  Her private SLP had a great idea.  In those days she was only working on CV and VC syllables.  We could get Ash, and we could get In.  We settled for Ashinn.  I actually was thrilled then when she said it.  After that, it took repetition after repetition to actually put the sounds together correctly and then more practice with her actually remembering and saying it on command.  I have a note from her school SLP frequently about how they would go around her preschool last year and practice saying her name when people asked her. 
    I was okay with this, because as an SLP I know that L within the realm of what we consider a later developing sound.  Basically, it’s still developmentally appropriate not to have an L at three years old, apraxia or not.  
    Now Ashlynn is 4 years 7 months.  Just a few days ago my husband and I went to the grocery store and the clerk asked her, “What’s your name?”  We waited for her to respond and she said “Ashin.”  The clerk as expected said, “Oh Ashley, what a cute name,”  and as expected without even thinking, my husband and I both followed up, “Yes, AshLYNN.”  
    Then came today.  We were looking at pictures in our photo album that I was putting away.  In it, I had some pictures of her friends from school.  I was quizzing her on their names and she could tell me most of them.  We came to a girl named “Calista.” Very deliberately, she said “Ca-Lista”  
    My head whipped around.
    “Ashlynn!  Did you hear the L sound in her name??  You said CaLista!!  Say it again, CaLista.”
    “Ca-Lista.”  
    “Ashlynn!  Do you realize that sound is in your name??  Say AshLynn.”
    “Ashhhhhhh-Lynn.”  
    And there it is.  Today, May 2nd 2014, Ashlynn finally said her name with all the sounds.  So funny how these small things bring big tears.

  • Show and Share

    In the Fall of this year, Ashlynn’s teacher decided to do a weekly show and share with the kids.  I LOVED the idea and jumped at the opportunity to work closely with the school SLP to help Ashlynn be successful.  At first, she just stood up there and didn’t say anything, so I sent a list of questions each week that we had practiced and that Ashlynn only had to answer using 1-2 word responses.  Then the SLP and her would practice before she went up. 

    One week, the teacher did show and share early, and I didn’t send anything with her.  The teacher reported she dug out some post it note out of her backpack and said a few words about them and showed all the kids!  I realized then I didn’t have to send questions anymore and I was thrilled.  Then, I just got this report from the SLP:

    “she does enjoy getting up, is talking in the group,calling on friends, and labeling the things she brings and saying 1 or 2 things about object….all of those things I think are huge for her!”
    These things are absolutely HUGE for her.  I’m so excited!