SLP Mommy of Apraxia

Tag: dyspraxia

  • Seeing the numbers in black and white are equivelant to a punch in the stomach

    Seeing the numbers in black and white are equivelant to a punch in the stomach

    This is the score I knew would be low, but still feels like a punch to the stomach when I see it in black and white.  Why is it so hard to see it in black in white??  I knew it would be low.  I KNEW it would be low.  The OT is my co-worker and friend.  She asked me if she could go over the report with me before she gave it to me.  I brushed her off explaining I had heard her give numerous reports to other parents.  I understand her report.  No need to cushion the blow.

    But the 4th percentile??  I’ve heard these scores at IEP meetings.  The 4th percentile means out of 100 kids, Ashlynn did better than 4.  Than 4!!  
    Sigh.
    I knew it would be low, but this hurts. My poor baby.
    “She would benefit from occupational therapy services to address gross and fine motor skills, self-help skills, attention, transitioning, and sensory processing skills.”
    So basically, Ashlynn needs help in every area the field of occupational therapy addresses.  I don’t know if that’s accurate but that’s what it feels like.
    On the sensory scales she has “definite dysfunction” in Balance and Motion, Planning and Ideas, and in Total Sensory Systems.  
    Double sigh.  “Definite Dysfunction” is fun to read.  Blah. 
    I”m sure there’s a plus side to all of this, and I’m sure I could find the silver lining like a I normally do and will; but for now, blah.  This sucks.  Apraxia sucks.  My daughter is too sweet to have something like this.  She doesn’t deserve it and I hate it.
  • You play dirt with me?

    You play dirt with me?

    We took our annual Fourth of July camping trip to Glendo State Reservoir in Wyoming.   It’s a family tradition, so I decided to document her progress each year.  Last year’s experience can be found here: Glendo 2013
    This was only a few short days after our near drowning incident at her pool during swimming lessons.

    Glendo is a HUGE reservoir, and a lot of our time involves the beach.  I was worried about Ashlynn’s safety, and also if she would be too scared to go in the water.  The first day she kept her distance from the shoreline; however, the second day she walked to the shoreline and was watching her dad who was floating in the water maybe 10 feet away. Sensing she wanted to come in, he held out his arms.  I didn’t see him at first and my sister motioned to me that it looked like she was going to go in.  I went running to her, but stopped just short behind her.

    I saw my husband with arms outstretched encouraging her to come to him, and then I saw her little shoulders rise up big as she took a deep breath, and she marched in the water.  She marched through the waves, keeping her balance, until she fell into his arms with a big smile upon her face.  He hoisted her up into a floaty with him to enjoy floating in the water under the warm sunshine.

    I looked on in awe.  She’s so brave.  Her character is quite astounding to me, and I’m her mother.  She faces challenges, fears, and obstacles head on.  She never gives up. She is determined and resilient.

    She also of course, rode our jet ski.  I wrote last year that she asked, “Ashlylnn play boats with daddy?” and this year, she announced proudly after riding, “I ride the je-si huh!”

    One of her favorite requests this year was, “you play dirt with me?”  imploring anyone who would listen to play in the sand with her.  No one had the heart to say no, so she made quite a few friends and suckered in quite a few family members!

    When it was time for fireworks, Ashlynn has historically stayed in the car.  However, this year, she again put on a brave face and ended up enjoying the show!  At times she would say, “that was too close!!!” but she never went back in the truck.

    I like documenting some of her milestones on the Fourth of July, Independence Day.  It’s so fitting since each year she becomes more and more independent.

  • 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.

  • Summer speech with a little sidewalk chalk

    Summer speech with a little sidewalk chalk

    Looking for a fun way to incorporate some speech practice into your summer schedule?  All you need is some sidewalk chalk and your kid!

    I picked some sound combos Ashlynn is currently working on in speech and drew them in the boxes of a hopscotch grid.  We then would throw a rock and whatever the rock landed on, we would hop to that picture and say the picture.  She was so busy having fun, she didn’t really realize I was working on her /l/, /l/ blends, and /s/ blends!   Not sure if you can see here, but we have a firefly, spider, butterfly, ladybug, dragonfly, bumblebee, roly poly, star, and clouds in the sky.  

    As a bonus, since Ashlynn has global apraxia, the added jumping and keeping feet in the boxes would make any PT or OT happy too!

    Look at those good jumps!  My heart smiles at this picture because jumping did not come easy.  If you’re interested, you can read about here: Jumping on the bed

    Not to be outdone, her 24 month old brother was hopping right along too and practicing speech! Fun for everyone, and momma stays sane with kids entertained!

  • 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.  

  • Private speech evaluation

    I have been antsy since the poor and disappointing experience I had in the school district.  Poor Ashlynn has once again been subjected to constant therapy all day long.  In addition, I couldn’t stop thinking that I still have a month until she starts school and therapy, and then it might be another month or more after that to “give the therapist a chance.”  We could potentially be losing two months of valuable time that she could be working on speech!

    A thought came to me in the middle of the night, when my mind was racing once again with how I could help her more; and I realized that my insurance probably covers therapy.  I discovered that it did! 

    I decided Ashlynn can’t wait.  There is so much research showing that early intervention is key, and as her mom AND as an SLP, I know she is at a prime stage in development to effect the most change.  She is open and willing to practice, and even opens the app on my iPad everyday that is just to practice speech.  We have to act NOW.  As much as I pride myself on keeping up on the current research, I am not an expert on apraxia.  You might be thinking, what did you go to school for then?  Well, let me tell you, the scope of practice for speech/language pathology is extremely vast and it grows everyday.  Let me list just a few disorders as a school based SLP I am responsible for treating:

    Articulation/Phonological disorder
    Receptive or Expressive Language Disorder
    Auditory Processing Disorder
    Stuttering
    Autism Spectrum Disorders
    Global Developmental Delay
    Cerebral Palsy
    Down’s Syndrome
    Apraxia
    Cleft lip and palate
    Velopharygeal deficiency

    This list is not exhaustive.  Basically, this list is a group of the most common disorders I see in the schools.  SLP’s are also responsible for:

    Voice disorders and pathology
    Traumatic Brain Injury
    Aphasia
    Dysphagia (swallowing disorders)
    Dysarthria

    This second list is more commonly seen in medical settings and not so much treated in the schools.

    My point in this list is to show that all SLP’s have knowledge and training in all these areas.  However, it’s much like a general practitioner.  Your primary care doctor knows a little about a lot; but if you really want an expert opinion you may choose to go to someone who specializes in just a certain part of the body.  Someone who deals with your certain condition daily and who sees a variety of types.  The field of speech/language pathology is not there yet, but there are SLP’s who choose to focus on just one or a few areas thereby becoming more of an “expert” in that particular disorder.

    In the schools, it’s pretty safe to say the SLP’s are experts in phonological, articulation, and language disorders since these are the most common disorders seen; and the average SLP will work with these disorders daily.  In addition, most school-based SLP’s are extremely knowledeable about the law as it relates to them.  However, the average school based SLP will not see as many less prevalent disorders such as apraxia or stuttering; and though qualified to treat it, may or may not be an “expert” so to speak in the disorder.   After the IEP meeting, I decided I want to get “expert” help for Ashlynn from someone who deals with apraxia daily or almost daily. 

    I took her into a private SLP yesterday who came recommended by other mommies of apraxic children.  I left the session with my mommy sense saying “yes, yes, yes!”  This is exactly who and what we need!  She was extremely knowledgeable in treating apraxia, knew and quoted all the references in the literature, and had Ashlynn working to talk the entire time!  I’m so excited not only for Ashlynn, but also for me to learn from her as I set out to become an expert in this disorder as well.