Tag: Apraxia journey

  • Kids say the darndest things….unless of course they don’t because they have apraxia.

    Kids say the darndest things….unless of course they don’t because they have apraxia.

    What was it that Bill Cosby always said?  Kids say the darndest things or something like that.  Unless of course, you know, they don’t because they have apraxia of speech and can’t even say the most basic things.  Or this that I just ran across:

    Unless of course, they don’t because they have Apraxia 

    When Ashlynn was born, I wondered what her personality would be, the funny things she would do and say.  I just expected it to happen.  She would be so witty.  She has two smart parents, and one in particular who is quite funny (I won’t name names but it’s not the SLP).

    As time marched on, I did see her personality, and she did do funny things, but it was all so limited. It’s pretty hard to say or do basic things, much less funny things when you have motor planning issues affect your entire body.

    Seeing other kids her age or younger on social media or worse in person, usually broke my heart.  It got to the point I didn’t want to take her around other kids her age and I had to hide friends on social media because I couldn’t bear another kids say the darndest things” moment, or really any moment that a typical developing child would have:

    Scenario:
    My crazy kid is doing back flips off our couch
    What I saw:
    Ashlynn can’t even jump yet

    Scenario:
    Look at our precious baby wearing her mom’s high heels.  We’re in trouble!
    What I saw:
    My precious baby still falls wearing her own sturdy tennis shoes

    Scenario:
    My son just imagined this carrot looked like an alien
    What I saw:
    Can my daughter even say carrot, and does she even know what an alien is?

    Scenario:
    Look at our big boy riding his two wheeler!
    What I saw:
    My big girl still can’t pedal a big wheel.

    Scenario:
    Little girl just said she wants to be a princess for Halloween.  She sure is daddy’s little princess!
    What I saw:
    My little princess has yet to say her name.

    The list goes on. Not that I wasn’t proud of all of these other kids, I was.  I was also happy for the parents, and maybe a little jealous.  How easy everything came.  All these cute little milestones taken for granted.

    Worse yet, the posts about their child’s annoying incessant talking.  If only there was some peace and quiet.

    Really?

    The quiet is our own little hell.  You can’t even to begin to understand how painful that is to hear as a mother who has a nonverbal child, when every quiet moment is spent praying that they will talk.

    That’s why my last post was so special I guess about Ashlynn confusing “coworkers” with “construction workers.”  She always comes along, just in her own time,

    and your kids will too.

  • So what’s the deal with gratitude anyway?

    So what’s the deal with gratitude anyway?

    This past week Dr. Maya Angelou passed away.  I was introduced to her in college with her poem “I know why the caged bird sings,” and many times on the Oprah Winfrey show.

    I have learned so much from so many teachers and inspirational women, but perhaps my greatest revelation in my life thus far is to be grateful.  With gratitude comes the fortitude to push forward despite any struggles I have been facing.  If I can look a difficult situation in the eye and decide to learn from it, rather than to be reduced by it, not only do I gain hope, but  I come out stronger, happier, and wiser because I have found something in which to be grateful.

    Albert Einstein once said, “In the middle of every difficulty lies opportunity.”

    That speaks to me.  If I can find opportunity in something difficult, I can also find gratitude in that positive.  A great metaphor for this is from Alphonse Karr when he said, “Some people grumble that roses have thorns, but I am grateful that thorns have roses.”

    Through life I have chosen to be inspired by people who not only refuse to be defeated by their difficulties, but who use them to their advantage. As Maya Angelou, a woman who was raped when she was seven and went on to be a mute for 5 years afterward said, “We may experience many defeats, but we must not be defeated by them.”

    I think so many people struggle with this.  There are numerous life coaches and self help books because people are craving happiness.
    I too struggled with this and I didn’t even realize.  My husband asked me one day, “Why is it that if there are multiple explanations for a given situation, or multiple outcomes for a given situation, that you always choose to believe the worst possible outcome will happen?”
    My response was I’d rather not get my hopes up that way I would never have to be disappointed.  As those words crossed my lips and I heard myself say them, I started to realize there might just be a better way to live.

    “Let gratitude be the pillow upon which you kneel to say our nightly prayer.”  Maya Angelou

    I do nightly prayers with my daughter Ashlynn, but last night I decided to add a quick section on gratitude.  When she asked me what gratitude means, I asked her, “what made you happy today?”  She had so many things!  She was grateful for paying (playing).  She was grateful for Baby Jace (her brother).  She was grateful for her gapes (grapes).  As she was sitting there telling me all of this, I really felt like I was onto something big.  If we can do this simple exercise when she’s young, perhaps it will be habit as she grows older.  To be honest, she already does it.  Despite her apraxia that brings so many defeats, she has never once been defeated.  Despite struggles that might frustrate others, she never loses hope.  She always seems happy and grateful for each new day and each new experience.  Oh, and a surprise twist I didn’t expect.  At the end she asked me, What you gafo fowa mama (What are you grateful for mama?).  Oh yeah, I guess I forgot kids will remember your example more than your words.

    “I’m grateful for you and Jace and daddy.”
    “I’m grateful for the walk we took today in the warm sun.”
    “I’m grateful for being grateful.”

  • The day I realized apraxia has been a blessing.

    The day I realized apraxia has been a blessing.

    Yes, you read the title correct.  I just called apraxia a blessing.  It took me a long time to get to this point.  I certainly didn’t feel it was a blessing here 2.5 years, or here, New worries, or here IEP on the other side of the table, or here Background and suspicions.  I remember shouting “I HATE APRAXIA” “APRAXIA SUCKS!!” everytime I watched my daughter struggle.  Slowly but surely though, the blessings started to outweigh the diagnosis; in fact, blessings started to develop out of the diagnosis.

    I was talking to a mom the other day from Georgia at Mommy Square, and she told me she has met a lot of friends because of apraxia.  It got me thinking that I have too.  I have a mom from Syracuse with whom I formed a connection because of our commonality of being mom’s who were ALSO SLP’s.  We shared our frustration at the lack of knowledge surrounding apraxia, and our mission to be educated on it.  I have a mom from Utah who has a daughter the same age as mine with apraxia.  We blog, collaborate, and fight apraxia together.  I met Sharon Gretz,  the founder of CASANA, the non-profit behind the apraxia-kids website.  Meeting her was a pivotal, inspirational moment in my life.

    All these moms have one thing in common.  They all are incredible, inspirational women, and they all go through extraordinary lengths in the names of their child.

    I am blessed to have found and to know each of them.  I am blessed to understand from an emphatic position what it is like to have a child with apraixa.

    I am blessed that I was chosen to be her mommy, because through her I have learned the true meaning of perseverance and bravery by seeing them through the eyes of my daughter.

    I am blessed because we have so many people in her corner.  Grandma’s, Grandpa’s, Uncles, Aunts, & cousins all cheering her on.

    I am blessed because out of the struggle has come joys I could never have dreamed of or experienced myself.

    I am blessed because though her dx could have brought distance between my husband and I, it only brought us closer toward the common goal of beating it.

    I am blessed because my husband confided one day that when he starts to feel bad about the hand Ashlynn was dealt, he always sees her overcome it.

    I am blessed because if not for her, I wouldn’t have set a goal to specialize in apraxia, and in turn, I may not have met all the wonderful people I have met, or been able to treat all the wonderful children I am priveleged to treat.

    I am blessed because I never take for granted one word, one sentence, or one song.

    I am blessed because I know other parents who feel the same.

    I am blessed because apraxia has taught me gratitude.

    I am blessed from simply being her mother.

  • What I would have told myself 2 years ago.

    What I would have told myself 2 years ago.

    There was a time, a time not long ago but that seems like almost forever now, that when someone asked me Ashlynn’s age I immediately became defensive.

    “Why?” you might ask yourself.  Seems like a typical question among moms in that age group.
    It is……….. until your child is delayed.  Then that game isn’t fun anymore.

    Every time the question was asked, I found myself rounding down.  When she was almost 2 1/2, I still said she had just turned 2.  When she was almost 3, I said she was 2 1/2, because, you know, technically she still was only 2 1/2.  I might have been in some sort of denial, but at least to others she didn’t seem THAT far behind.

    I don’t know if I was projecting (I probably was projecting), and I don’t know if they really felt this way (pretty sure they didn’t feel this way), but I felt like once they found out her age they immediately measured up their kid to her, and their chest puffed out a little further and their smile got a little bigger because they were SO proud of their little offspring; and I HATED it.

    I know that sounds dumb, and I can’t really tell you why I did it, but I did.  However, I can say now that I don’t do that anymore!  Yes, all of her difficulties are still there but:

    She’s talking.
    She has friends.
    She learns in school.
    She plays on the playground

    And

    She’s the most loving and accepting out of ALL the kids in her class.
    She’s the kindest.
    She’s the most intuitive and she is by far the most advanced in lessons of the heart than others her age, and yes, that does make me proud of her and there is nothing wrong with that.  Just like there is nothing wrong with the parent who is so proud their child is verbally gifted, or an athletic super star.

    A girl who is verbally gifted and can speak TWO languages already in her preschool class, turned out to be a loner and the class bully.  Despite being mean to Ashlynn, Ashlynn still is sweet and kind.  When we talk about it, Ashlynn tells me that the girl “is sad mommy”   and you know, Ashlynn’s right.  Bullies are sad, and that’s why they are mean, and the only person who sees that is Ashlynn.

     That’s pretty dang impressive.  We all have our roads to battle.  That parent was probably bursting with pride at her daughter’s early verbal skills, only to be fretful and worried now that her young daughter is already a loner and a bully.  I don’t envy that mom, but I do understand that we all go through something that unites us as mothers.  We all have our worries, and we all lose sleep over our children.  No one gets left out.

    I just wish I could have told myself this 2 years ago.

  • 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.