SLP Mommy of Apraxia

Category: Apraxia

  • The importance of touch

    The importance of touch

    “Touching helps us build relationships with one another.”
    This is a simple but profound quote from an article I read on the power of touch: Importance through touch.  It went on to say that babies first communicate through touch and crying, and that their needs are met mainly through touch. It got me thinking. Since Ashlynn took longer to talk, she could only continue to communicate with us through touch and crying.  She has pretty good functional communication now, but when she is tired she still resorts to crying or a tantrum to express her frustration. 

    Other parents who have kids with apraxia frequently report their kiddos are the sweetest and most loving children.  Generous with their hugs and kisses, they are also sensitive and highly attuned to feelings and emotions.  This describes Ashlynn as well, now.

    As a baby, she wasn’t as cuddly.  She always wanted down, and would only cuddle with me long enough to breastfeed or fall asleep.  However, she did always need to be touching hands.  Daddy’s hands, Grandma’s hands, my hands.  When she started preschool this year, the teacher reported she was very loving, which was great; but they were having to teach her to ask for hugs first because not every child shared her enthusiasm for hugs (except the little boy with Down Syndrome.  It’s a hug fest when those two get together!)  Holding hands, however,  she can usually get a way with!

    Ashlynn holds everyone’s hand.  If they hold it back, she immediately declares them a friend. If they resist, she moves onto the next kid.  When she plays with her cousins her age, she also wants to hold their hand.  I have so many pictures of her hand in hand with her cousins and various children.  Not to mention her little brother.  They hold hands in the car on the way to Grandma’s house for daycare. 

  • “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

    “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

    I love, LOVE Maya Angelou.  I always have.  I was talking with a friend today who was concerned about her apraxic son talking so he can get a job one day.  In the midst of apraxia, in the midst of our children not speaking, us parents all get caught up in the thick, dense trees.  We all, including myself, miss the forest.  In the end, we all ultimately just want our kids to be happy.  We want them to have every opportunity to fulfill their dreams, which is why we cry, worry, and agonize over all the details.  Just recently, I’ve been kept up at night thinking about how my daughter needs to not only be able to point to letters, but she has to learn their names and sounds before Kindergarten.  Yes, she has one more year of Pre-K, but we already know her attention is an issue and she needs more repetition than most and she has apraxia which means even when she knows the letters she has word finding issues and…and…and…..

    and…I stopped myself to remember the forest.  I want above all for Ashlynn to be happy.  This picture is from a shirt she wears that her Grandma Green bought her.  It is her to a tee, pun intended.  She is silly, she is happy, she is sweet, and she is kind.  I think the world needs more children and people like this.  

    The political outlook has no time for this.  It’s all about Race to the Top, No Child Left Behind, and more recently, the Common Core.  It’s all about test scores and academic achievement.  Teachers are judged on their ability to teach by a test score.  

    The world has and will have enough big test scores.  What the world needs more of, is big, happy hearts.  As Maya Angelou says, “people will forget what you said.”  In my desire to hear her talk, I was really looking for the feeling of being told, “mommy, I love you.”  If we listen close, it’s the little hand that reaches out to us, it’s in their hug and their big sloppy kiss that they might have because they have yet to pucker, and we know in their tears when we leave.  My daughter’s heart is on her sleeve, and in her young four years she epitomizes already what Jesus said in John 3:18  

    My little children, let us not love in word, neither in tongue; but in deed and in truth.  

    and defies what Einstein mused on when he said,

    ““Action speaks louder than words but not nearly as often.” 

    Our kids’ actions already speak louder than words!! They have learned a lesson in life some people fail to learn.  Though my daughter is talking in basic 4-6 word sentences now, she is still sweet, kind, and happy, and will still hug, smile, giggle, and hold someone’s hand over talking.  People don’t remember what she said or what she didn’t say.  Everyone remembers how she makes them feel. 

     If this is the woman she is destined to become, than I think I can say as her mother she is successful.  




  • “She just needs more repetition than most.”

    “She just needs more repetition than most.”

    Today was Ashlynn’s Spring parent/teacher conference.  I don’t know what I expect really.  As much as most of the time is spent focusing on her strengths, all that hits me like a ton of bricks is what she ISN’T yet doing. My husband thought I was crazy.  He couldn’t come to the meeting today, but read the paper tonight at dinner and told me he felt it was predominantly positive.  Look at all the things she’s doing that she wasn’t doing last year at this time.

    True.

    I guess I just hate listening to all the positives while holding my breath and waiting to hear the “but…..” 

    It sucks.  I just leave there feeling desperate, sad, and worried, no matter how many positives they managed to come up with.

    Hearing all the buzz words I’ve used in meetings before, “needs more repetition than other children” “learns differently” “has a great attitude which is a huge asset”

    I guess I should focus on the positive though.  Her strength was in pro-social behavior and she even gets in trouble now for talking too much!  Um, what?  Talking too much??  She didn’t even talk to her peers last year in preschool so that is AWESOME.   Her language sample during sensory table was as follows:

    I help you?
    What doing?
    I’m making a pizza to baby.
    I like pink.
    You have purple.
    I sit here?
    I play with Austin?
    Blue goes right there, see?

    As an SLP, this is awesome.  She’s four years old and is using primarily 3-4 word sentences.  Still a little behind, but her sentence length is only a little under than what is expected for her age.  This is exciting.  Also, she was SO clueless about her colors last year.  It sounds like she’s finally starting to retain them.

    The report said “she is understood by most familiar people and strangers can usually understand her if she speaks slowly.”  That is also great news!  I need to revel in all of this progress.  Can’t I just remember when  I was freaked out she wasn’t talking to anyone and all I wished for was that she would talk?  I know….I NEED to….it’s just…then there is all the academic things she needs to know now.
    She still needs more practice recognizing and naming the letters in her name. She can count to ten and count up to five objects accurately using 1:1 correspondence.

    Okay, yay, that’s awesome…..except I know by the end of preschool they need to know ALL their letter names and letter sounds, count to 20, and be able to write their name by the time they enter Kindergarten.  The teacher tried to encourage me by saying, “well, she does have one more year in preschool.”  and then ended, “but summer is a critical time because a lot of kids do show some regression.” 

    Yes, yes that’s true.  I hope next March at her Spring parent/teacher conference we will be on target.  In the meantime, I am officially off my sabbatical of only being Ashlynn’s mom.  She needs me more than that.  I went out and bought a bunch of alphabet cards, foam letter puzzles, and a dry erase board.  I sorted the letters of her name into a bag, and we’re going to practice putting them in order and naming them every day.  We’re also going to go through the foam letters and name the letter and the sound daily.

    I downloaded a kid weekly planner so that Ashlynn can learn the days of the week and each day we can talk about what she is going to do, and then at the end of the day we can talk about what she did. 

    I printed out three picture sequence cards so she can practice putting them in order as well to encourage pre-reading and narrative abilities there too. 

    I’ve been depressed today just thinking about all of our hard work ahead, but tonight when I was working with Ashlynn, she’s not depressed at all.  She was thrilled to have 1:1 attention from her mama and just attacked it all with her positive attitude. 

    So here’s to a lot of work, but most importantly, a positive attitude to go with it. 

  • 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.

  • 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!

  • She really does have “special needs.”

    She really does have “special needs.”

    So, I obviously am well aware my daughter has apraxia.  I’m well aware of her challenges, but for some reason, I didn’t want to admit she’s “special needs.”  I don’t know why.  I work with special needs kids all day long.  It’s what I do.  I don’t see them as special needs.  I just see them as maybe learning differently, or needing different supports than other kids to be successful.  I guess that’s why it has taken me until now to admit that yes, my daughter does in fact have special needs.

    When she was first diagnosed I was drowning in a sea of sorrow and desperation.  Sorrow because I knew how much more work it would really take her to talk, and desperation because I so desperately wanted to help her and hear her voice, her thoughts, her say, “I love you.”  After that though, I picked myself up and took her to endless therapy appointments spending thousands of dollars on her therapy and little by little, her speech improved.  I’ve been riding a pretty good high for awhile.  She’s talking at school, she’s speaking in sentences, and for all intents and purposes, she has found her voice! Oh, and now with a neat trick from OT she is putting on her coat BY HERSELF and is able to get her shoes and socks on without help.  I see the light at the end of the tunnel!

    Until about a month ago.  It’s one thing to be told you’re daughter will be sitting in a cube chair and has a weighted lap blanket to help keep her focused.  It’s another to see her with those accommodations in the classroom.  She was happy though and if it was helping her, well ok.  Then at teacher conference, the teacher told me she needed us to work on Ashlynn’s name, or at least get her recognizing the first three letters and being able to put them in order.  Sounds easy right?

    Wrong.

    She doesn’t consistently identify the right letter, even when I only have three in front of her; and I have to keep cueing her to start at the left and put them in order in a linear fashion to the right.  I created a grid with three boxes so she could visually see where the letters fit, and she started to get it a little.  In the bathtub, I would take the foam letters and have her put one on each tile of the wall.  Then the OT started sending home packets.  Ashlynn isn’t crossing midline.  She switches hands instead of reaching across her body, and she needs to cross midline to eventually develop hand dominance, and oh yea, to write!  Hmm…I realized she wasn’t starting with the left box for the first letter of her name because she wasn’t crossing midline.

    I know this doesn’t seem like a big deal, but now I have to work on getting her to cross midline with various activities, and also work on her name.

    Ok, that’s cool.  I got this. I’ll keep cueing her with the letters and I’ll add practicing in the bathtub making sure she crosses midline washing herself, and when I’m working on her brushing her own teeth (which she still can’t do well yet)  I’ll also remind her to cross midline.  When she’s eating dinner, instead of just cueing her EACH time to use her fork (which is hard to use because of her apraxia), I’ll also make sure she is crossing midline instead of switching hands.  That while practicing drinking out of a big girl cup and not managing to spill her drink, plate, or drop her fork.  Oh, and when I read her a book at night, while I’m busy reading and then asking questions and making her answer using complete sentences and correcting her articulation, I’ll make sure she flips the pages by crossing midline with her right hand and turning the page. Phew.  Yes, I can fit this in though.  I got this.

    Then on Monday I get caught by the OT in person.  Ashlynn has very weak upper body strength and she needed me to also do exercises with her to improve it.  I was left with another packet.  My shoulders started feeling a little bit heavier.  It’s okay though, I got this.  No problem.  When I work out, I can just have Ashlynn “work out” with me.

    Wrong.

    She needs max assist to do the exercises. I see the need though as she really is weak and can’t even lay on her tummy for more than 30 seconds without fatiguing. Her upper core just isn’t there.  Hmm, I wonder if that’s why it’s hard for her to ride a tricycle, oh crap, I haven’t practiced pedaling with her in awhile.  What kid can’t ride a bike!  I need to get out there with her.  Oops, I digress.

    Oh no!  I just remembered the teacher sent out a newsletter that the kids will be having show and tell every week and Ashlynn’s turn is tomorrow.  Crap, how is she going to do show and tell?  Yes, she can talk, but on demand she clams up.  Better email the SLP.  Okay, that’s done.  I wrote three questions and practiced them with Ashlynn after dinner.  I sent it with Grandma who drops her off, and then I emailed the SLP who promised to practice with her before it was her turn.  Success!

    The next morning I get her ready for school.  She comes out with her coat on upside down and her shoes on the wrong feet.  Sigh.  I haven’t worked on her jacket or shoes in awhile….
    ….and I finally realize.

    My daughter has special needs.

    5/17/17 Edit – I am editing this to reflect my education around special needs, and though she has special needs, the term that is being universally more accepted now is neuro-divergent.