Category: developmental coordination disorder

  • Finding hope again is like finding a diamond in the rough

    Finding hope again is like finding a diamond in the rough

    We always hear about mama bears.  Okay, maybe it’s just me, but I guess I am one.  Daddy bears don’t have quite a good a reputation.  Daddy wolves though.  Watch out.  Read about them.  You do NOT want to cross a daddy wolf.

    My dad is a daddy wolf.   I found a definition online that read,

    “Male wolves are attentive, monogamous and fiercely protective dads that live with their she-wolves for life. A wolf pack is essentially a classic nuclear family consisting of a mom, dad and kids.”

    If I had written that definition, I would extend the kids to “grandkids” as well.

    That’s because my dad is a daddy wolf.  My dad loves being a grandpa, and he likes being called grandpa.  Grandpa is a name of respect…just like dad.  A child says “dad” out of respect, and similarly says “grandpa” for the same reason.

    He had 5 grandchildren before Ashlynn.  They ALL respectfully refer to him as “Grandpa Baskall.”  It is a title he has certainly earned.

    Then came Ashlynn.  Then came apraxia.  Yeah, Grandpa is going to be pronounced “papa” and that’s just the way it is. I saw my dad soften in these years.  We always think about the pain parents feel that their child cannot say their name…….but when do we talk about the grandparents?  My dad, though words were not spoken, I think had also yearned to hear his grandchild say “Grandpa.”

    She clearly loved him.  She gravitated toward him as a nonverbal two year old.  He would play with her and make her laugh.  He would practice writing with her, playing ball, and pulling toy boats in the grass outside. She giggled in his presence.  She clearly loved him…..but she couldn’t even say his name “grandpa” much less “I love you.”

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    Ashlynn dancing on my dad’s feet at his 45th wedding anniversary.

    One day….when she was three….she was able to say the words “papa.”  I can’t recall the exact moment in time, but I can recall that my dad never even blinked from that day forward to being called “papa.”

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    My dad working on “ball skills” with my daughter who has dyspraxia

    One day, on our way to my parent’s house, Ashlynn told me she was happy for the first time.  She was 4 1/2.  It was so monumental, I wrote an entire post about it.  I think it’s a great read, and if you want to read about it, it was entitled: Ashlynn Happy….Papa’s House.

    She is now 7.  She is verbal, intelligible, and says so many more things now.  She would be able to say “Grandpa Baskall” now, but he is not her Grandpa Baskall, he is and always has been…her Papa.  The same is true on my husband’s side.  Where they both went by Grandpa, they both now are Papa…because of Ashlynn.

    Though Ashlynn can speak, she is still a girl of few words. If you know her, you know there is way more in her head than what we hear out of her mouth.  Thank you to her additional language processing disorder that has been heaped on top of the apraxia.

    Anyway, on Thanksgiving, my dad, my daddy wolf, was talking to Ashlynn before he turned to me and resolutely commented on how he couldn’t wait for the day she would “break out.”  The day when we would truly hear all the thoughts in her head.  He laughed that we would all have to “watch out” because boy would she have a lot to say.

    I could only smile wistfully.  I have to be honest and say I’m not sure that will ever be her reality.  As I mentioned, Ashlynn’s language processing is also impacted….aside from apraxia.  I hoped my dad was right.  As I looked at him, at his resolve, and his absolute certainty Ashlynn would one day break out, I started to remember how he believed in me that same way.  That daddy wolf way.  That papa wolf way.  My dad ALWAYS believed in me.  It wasn’t a belief born out of encouragement either.  It’s not like he was always telling me I could be anything I wanted.  On the contrary, he’s very practical and encouraged me to do practical things like don’t take out student loans and have a plan B (some of which I listened to, a lot of which I didn’t…. love ya dad!)

    No, it was deeper than that.  It was a visceral belief that I felt…..and though I am still scared for Ashlynn, I took comfort in that moment that the same daddy wolf who  believed in me, had that same firm belief and resolve in MY child.

    It gave me hope again, and boy, aren’t we always looking for renewed hope.

    Speaking of hope, today the internet affords us many opportunities that wouldn’t have been possible…one big one being knowing others with the disorder.

    In my search for others like Ashlynn, I came across a page called “Mikey’s Wish – Verbal Dyspraxia Awareness.” That is the term for Childhood Apraxia of Speech as we know it here in the U.S.  Finding his page, was like finding home.  Ashlynn’s disorder is sooooo misunderstood.  Many peg her as having a cognitive impairment, and on a test of cognition, I am certain she would perform poorly too.  However, motor planning is a bitch.  It impacts EVERY area.   My daughter’s cognition is in tact.  IQ tests will never be able to adequately describe her because inherent in any IQ test is language processing and motor planning.

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    One of Mikey’s poems

    Anyway, back to Mikey.  I have been soooo impressed by Mikey’s writing. He writes poems and other genres to spread awareness and to encourage expression and understanding of those who have apraxia.

    When I was in AP English, I remember our teacher saying writing should make people “feel.”  Good writing touches on “universal experiences” that touch a large portion of the population regardless of culture, background, or creed.

    I can tell you, that the few things I’ve read now that are written by people with apraxia “speak to me.”  I start to have hope that maybe Ashlynn will have an outlet in writing.

    The two I’m following right now are “Mikey’s  Wish” and “The Girl with the Funny Accent.”

    Their writing frequently makes me tear up.   Ashlynn may never “break out” as my dad described.  Or…one day…maybe she will.  We certainly have success stories now in Ronda Rousey and Gage Golightly.

    I’ve been enjoying Mikey’s poems so much that recently I asked him if he ever thought of compiling them and selling them.  I would love to buy them to have Ashlynn read when she’s older.  He said he had not, but it apparently got him thinking.   He recently wrote this

    I have been reading up about getting poems published and it is very hard to do. Then I got thinking about something that I would have liked to have access to when I was younger. I don’t know if I will be able to do it but I would definitely like to give it a go. I would have really liked to have a book that would either make myself feel better about having verbal dyspraxia or that could be read to (or read by) other children to help them understand a bit about verbal dyspraxia. Aimed at primary age children, so maybe written in rhyme with nice pictures. I would really like to be able to make this a reality. Can you imagine a child who has always struggled with literacy managing to get a book in print. Now that would be a huge achievement. I know I can write it so I will, it’s just getting it noticed by the right people that I might find difficult. But I am used to facing difficulties so hopefully that won’t stop me and if I don’t try I will never know, so watch this space. ?

    Well, I for one am watching, and cheering.  He’s absolutely right.  How amazing would that be that a child who struggled with literacy would get a book in print.  It really speaks to his intelligence and how even though he had struggles talking, then reading, then writing, he’s in there and it now comes through IN his writing.

    When my dad said he can’t wait until Ashlynn “breaks out” it may never be verbally, but perhaps it will be in a different way.  Actually, it could be in a way of which I am rather quite fond of…writing.

    This weeken15284868_10209136846470865_6471383872322827586_nd she brought home this.  I pulled out the paper, saw the rubric and winced.  Like, I seriously physically winced because rubrics lately have been…well…depressing.

    I took a deep breath and opened my eyes.  Ashlynn rushed over and said, “Look mommy, I got a 6 and a 2 and another 2..”

    I braced myself for it being out of like 10 points or something.  Instead, I saw 6/6.  2/2.  The note said “with TA” which means she had TA support, but look at what she accomplished!  This girl with apraxia, a language processing disorder and dyspraxia.  I’ll be damned.  Nothing has come easy, and I finally feel we have a therapeutic dose now of her meds, she’s in private OT again, her reading plan was changed after conferences to put her back in the classroom while continuing to get pulled for those foundational skills, and I started her on a home reading program called “ALL” recommended in the apraxia groups for kids who are nonverbal; so maybe it’s all pulling together now.

    I’m so proud of her. She was so proud of her. When Ashlynn struggled for years to just write her name, I couldn’t imagine getting to this point.  All these words and sentences on a paper written by HER hands, and suddenly I find hope again.  Hope on this one rubric out of so many that have come back poor, this one rubric is like a diamond in the rough...so it’s now hanging on my fridge, to honor her, but to also remind me we may roll down a lot hills, but it’s never about the fall.  It’s how you get back up and try again….

    and again

    and again in our case. In her case.

    So we will.

    When we fall we might have a good cry, okay I might have a good cry because Ashlynn doesn’t seem to get sad over all the hard work she is doing.  Then we will stand up, more determined than before.  I’ll brush myself off, take her hand, and start climbing up again, and again, and again, until we’re at the freakin top because I know if we do this, it may be slow, and it may be hard, but we will always keep moving forward.

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  • Feels like we’re falling down the hill again…..

    Feels like we’re falling down the hill again…..

    I’ve been sad.  Really sad.  What’s the point in sugar coating it.  It’s interesting, because I didn’t really start blogging until after we were really seeing progress in Ashlynn’s speech.  I was able to be upbeat and positive in most of my posts.  Sure there were some sad ones, or some angry ones, or some worried ones, but for the most part, I was feeling and had been until recently,  pretty optimistic.

    I can assure you though, I had very, very, VERY dark and sad days.  Days I felt the worry would consume me.  Days I felt the guilt and the weight would be too heavy and I would have to admit I didn’t do enough.  I didn’t help her enough, and then I would be upset about this potential future outcome and obsess over what I could do more to help her.  It’s a vicious cycle I tell you.

    Ashlynn has now overcome my greatest fear.  She can speak.  She will be an intelligible speaker and she will be a verbal communicator.  She will probably be slower.  She will probably have continued word finding issues, but she will speak.  For so long when she wasn’t speaking, I would imagine a hill.  At the top the hill, was the trophy, which was intelligible, verbal, communication.  As she failed to gain speech, I felt like each day had us slipping further down the hill.  I was desperate and worried.  How would we ever catch up?  At least if we were climbing the hill, I have hope.  However, it felt we were grasping yet slipping, and then stumbling even further back….and that feeling friends, is probably one of the worst feelings  you can feel as a parent.

    I haven’t faced “the hill” in awhile.  I mean I have, but at least not in a negative way.  We have been steadily climbing the hill.  We have been getting closer and closer to the top.  In fact, in regard to speech, we reached the top.  Language is still an issue, but we are closing in.  I see the prize.

    Then came school…more specifically, reading.  Writing.  I found us on a new hill, and on this hill, we are very, very far down.  Through Kinder, though I felt we weren’t necessarily closing the gap, it also didn’t feel like we were tumbling backwards either.

    Enter 1st grade.  Commence tumbling.  Commence somersaulting.  Down.  Down.  Down we went.  The pace of the classroom curriculum is VERY fast.  Too fast.  We need about 1000x more repetitions than the typical peer, and honestly, there just isn’t that many hours in a day. I have had to face some very, VERY uncomfortable, okay painful truths, with the main one being this:

    Ashlynn is going to have to live with some degree of disability for her entire life.

    Call me delusional, but I really thought I could fix this. I really thought I could expert in this and get her all the help…and the RIGHT help she needed and we would overcome this, and by overcome, I mean soon.  Like, really soon.

    It has been very, very, very painful to realize this isn’t going to happen on my timetable.

    My husband has told me before he feels he has a better understanding of Ashlynn’s reality than me.  I would scoff.  Impossible.  He doesn’t know anything.  (love you babe).  I’m the expert in this.  I am NOT in denial.  I know the problems and we’re going to attack and beat them.

    Well, I think this year has been revealing to me what my husband knew all along.  I have been in denial.

    I should have known.  I mean, afterall, I’m the mom who when filling out a disability state park pass to get a discounted rate, actually felt guilty about it telling myself that even though Ashlynn will grow out of it, if the state approved it I wasn’t cheating.

    Hah!  I actually felt like I was cheating when filling out a state disability pass and I didn’t think I was in denial?

    Can I shake my head anymore??  It’s an approved disability because Ashlynn HAS a disability.

    UGH

    Do I need to write that in black and white to sink in?  It should be obvious by now.  I can’t fix this.  No matter how many continuing education credits or certifications I get, I can’t fix this.  A wise woman who has walked this road before me, had a “hard” conversation with me recently (which I appreciated). However, it went something to the effect of how she wasn’t sure I was truly accepting Ashlynn for who she is, and if I don’t, how that could truly be to her detriment.

    Deep breath. Breathe in…..breathe out.

    Everything I do is for her benefit.  Could I truly be behaving in a manner that was to her detriment?

    I have realized that I have.   I need to realize there is another hill we are yet again tumbling down, and after we reach the top, there will be yet another hill quite possibly that we will be facing, and at first falling backward on.

    As I type that though, I think of life in general.  My life without a disability.  The hill metaphor is still relevant.  Life is not a ride on smooth waters.  Life always throws a wave, a dip, or a hill in the way, regardless. Though I would trade places with Ashlynn in a second, perhaps she is learning early what some adults may spend their entire life trying to learn.

    A life worth living is about struggles, because without struggles you could never feel triumph.
    A life worth living is about sadness, because without sadness, you could never truly feel happiness.
    A life worth living is about defeat, because without defeat, you could never truly feel success.

    A young man with apraxia in the UK, Mikey from Mikey’s Wish, reminded me recently that learning issues Ashlynn will have to tackle herself, but the greatest gift I can give her is just my support.

    It doesn’t seem like enough, but I don’t think I can “fix” her anymore.  I can though, hold her hand and squeeze it when she’s sad or when it’s hard.  I can’t take away her disability, but I will walk through every fire with her to overcome it.

    I still feel like we are tumbling down another hill, and though I can’t promise her I can carry her to the top, I can at least promise I will hold her hand and die trying to get there

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  • The decline of the therapeutic relationship and why you don’t have to stand for it.

    The decline of the therapeutic relationship and why you don’t have to stand for it.

    I’ve noticed something since I’ve had my daughter in therapy.  Therapy offices that are small, with only a couple therapists and an actively involved owner, yield happy clients.  Conversely, therapy offices only interested in expanding their brand, that staff numerous therapists and have a relatively un-involved owner, have more unhappy clients.

    I used to work at a place this happened actually.  The owner was fantastic.  Smart, personable and caring, her clients improved, her families were happy, and her reputation grew.  Soon, she was staffing multiple therapists from two different disciplines and opened up a second location.  She became  stretched so thin, that she outlined a list of policies and procedures, and then delegated a supervisor and receptionist to enforcing them.  The result?  Common sense flies out the window.  The parent/therapist relationship becomes strained.  People leave.  I know personally now why this happened.

    Recently I was on the receiving end of this.  I took my daughter to what was supposed to be a well reputed therapy place in Denver, Amaryllis Therapy Network in the Highlands.  I wasn’t too pleased with the evaluation, because Ashlynn has been evaluated three times before with the very same test and this time she scored 20 points lower.  20??  I had to ask myself if that was really accurate and I had quite a long conversation with the therapist who said attention could have played a factor or this or that.  Ok.  Fine.

    However, then she was transferred to a different OT for treatment.  They initially wanted to have her see an assistant.  I have no problems with assistants.  I used to be an SLPA (which is an SLP assistant) and an assistant is more than capable of doing therapy.  However, what they are not able to do, no let me correct that, what they are not allowed to do,  is  change a treatment plan when they see something isn’t working.  They are required to consult with the supervising therapist who IS qualified to develop treatment plans before they change it, and that’s just assuming you have an assistant who is experienced enough to know it needs changing.  Anyway,   I needed someone who can change a treatment mid session if they see something is or isn’t working.  My daughter is not a typical case.  She’s involved and I don’t want to waste time.  I’m not trying to sound rude, but it’s just the way it is.  As a side note though, it does make we wonder how many parents reading this even know if their child is seeing an SLPA or a CODA.  If they are, just know that you want to make sure a supervising therapist is really staying on top of things in regard to your child’s treatment approach…just sayin.

    Anyway, they complied, and I was given a different OT.  I wanted a conference call set up between the new OT, me, and Ashlynn’s school OT who is also my colleague, a therapist I trust, and has been with Ashlynn since preschool.  When she called, it was clear she had not thoroughly read Ashlynn’s report and then mentioned how Ashlynn had done a “group” therapy.

    I’m sorry what? Group therapy?  Ashlynn can get group therapy in school.  I’m paying for private therapy.  I need INTENSE private therapy.  She quickly reassured me it was still 1:1 kid to therapist just participating in a group activity.  Ok…maybe….but that’s not what I was paying for which even furthered my resolve that we needed a group conference call.  I asked if she would email me and she agreed to set up a time.  I NEVER received an email.

    I’m reasonable.  Ok.  Maybe she entered my email address wrong?  I call the next week before another session has come and gone and tell the receptionist I never received an email, would she email me again.  She check the email address on file.  It’s correct.  Hmm.  Okay.  She’ll send another one.  Perfect, thanks.

    ANOTHER week goes by.  NO email.  My husband is the one that takes Ashlynn so I can’t just bring it up.  I’m pretty ticked about this to be honest, but it can still be dealt with…worked through.  Probably an honest mistake.  However, I’m going out of town and I don’t think I can make the carpool arrangements work to get Ashlynn there this week.

    Now, yes.  I know I signed  48 HOUR cancellation policy paper.  I actually remember signing it because it struck me as outrageous.  Who has a 48 hour cancellation policy?  Oh well.  There are people who do chronically abuse the system, and cancellation policies are in place to protect and respect the therapist’s time.  I get that….not only because I just get that…but because I AM A THERAPIST WHO DOES THIS EXACT SAME THING AS A JOB.

    Dang!  Why is that in caps you ask? Well, it’s because even when therapists, or doctors, or people in a field where they are to care about people have a cancellation policy, it’s usually only enforced to the chronic problem clients.  Any person with a heart and common sense, understands that things come up.  If someone is abusing the system, then yes.  A cancellation policy should be enforced.  I was NOT abusing the system.  I called 30 hours in advance, choosing to wait until the morning instead of the hour they closed.

    This was my first time cancelling, we aren’t late, and my husband probably spends close to 3 hours round trip getting her down there through rush hour traffic and back home. Not to mention the financial hardships families are already going through. You would think someone who actually has a heart and interest in caring about children would have been understanding. I know I am! I don’t even have my clients sign a cancellation fee policy, and if I did…I would give them chances. Unbelievable and SO sad. It’s not right we go through this when we are already bled dry from the cost of therapy. So now, I have to find a NEW place and begin the process again.

    Oh, and one more thing. The email situation?  The supervisor said it was documented she emailed me twice.  “Maybe I didn’t get it due to spam filters?”  I went along with it.  Afterall, I hadn’t yet checked spam, even though it’s ironic that I DO get all of THEIR spam email.  Well, low and behold I DID check, and by check I mean SCOUR my spam email and there was nothing.  NOTHING.  NO email from her…so now on top of it I can add lying.

    Anyway, I digress.  I have to find a new place and begin the process again.

    Oh…but I WILL begin it again, because I know there are places and therapists who do not feel the need to run their therapy office like a corporation and treat people, actual human beings, as only dollar signs.  I know, because I’m one of those people, and I know many, many other good therapists who are ALSO one of those people.

    My message to any parent reading, is if you feel like your child and your appointments are nothing but a dollar sign, then you need to leave.  That is so unacceptable.

    My message to any professional reading this, is you need to know and understand we are counting on you! We are putting our faith and literally our children’s success and outcomes in your hands.  Meet us halfway. We are your paycheck, but we are also human.  If you are a person running a therapy office like a corporation, take heed.  YOU may be an honest and awesome therapist, but don’t get caught in some black and white policy and procedures BS.  These are humans, humans with disabilities no less, that you are dealing with.  Have some freaking compassion beyond your rules and regulations.

    Oh, and for anyone considering Amaryllis Therapy Network in Denver, scratch them off your list and move on.  Developmental Fx is where I’m headed, and unlike Amaryllis, I know many families who have been happy with the outcome.

  • Ashlynn play boats with daddy.

    Ashlynn play boats with daddy.

    This past Fourth of July weekend we went on our annual trip to Glendo State Park in Wyoming. My husband and I have been going since before we had kids. Without getting into all the details, once you go to Glendo for the Fourth, you always go back if you can! Last year we couldn’t go because I was having my son so we were very excited.

    When we went to the beach, Ashlynn saw my husband pull up on the jetski. She looked at her grandpa and me and announced, “Ashlynn play boats with Daddy?” I teared up immediately. I know I sound like such a sap, but when you are the parent of someone with apraxia and they say things and put novel words together in context, it is just the best feeling! I asked her if she wanted to ride the jetski with daddy, to which she enthusiastically replied “yes.” I of course then scripted the appropriate  way to ask the question and had her repeat, I want to ride the jetski with daddy.

    We still have a ways to go. We’ve been working on her using the first person “I” since before school was out. It’s just such a testament to how much repetition a child with apraxia needs, because I correct her and make her repeat her phrases and sentences using “I” every time she refers to herself as Ashlynn. We were so intent on getting her to learn her name that now it’s hard to get her to use something else.  However, I do know that she will get that too, and that’s a comforting feeling.

    Two years ago we took her to Glendo when she was 21 months old. At that time she had just learned to start walking really well and she only had a handful of word approximations. Unfortunately, anything that wasn’t a flat surface was difficult to walk on, so we still had to help her walk everywhere. She only had a handful of word approximations, and her favorite thing to say was “a dah.” and “hi.”  I’ve learned from my parent support group that most kids with apraxia have a go to sound that they use for everything, and “a dah” was Ashlynn’s.

    Fast forward though two years (and a lot of therapy and extracurricular activities to work on motor skills) and she was running on the beach and bending down on the sand. She is still unsteady in the waves and can’t be trusted around the fire pit for fear she will lose her balance and fall, but that will be a progress report for another time. For now, we celebrate that in two short years, a dah was replaced with a complex sentence asking to play boats with daddy, and now she fearlessly got up on the jetski.

    I look forward to coming years when she will be navigating around the campsite without fear of falling, swimming in the water, and maybe waterskiing or jetskiing on her own.  Also, I excitedly anticipate her talking our ear off around the campfire.