SLP Mommy of Apraxia

Category: apraxia blog

  • To love something with all your heart may also mean you have to let it go: The future of CASANA

    To love something with all your heart may also mean you have to let it go: The future of CASANA

    I’ve never been involved with non-profits until recently.  I mean, I had the couple that I liked and donated to and then went about my merry way.  Once I had Ashlynn and met Sharon Gretz, the founder of CASANA, knowing I could never repay her for the kindness and support she gave me, I turned to supporting CASANA 100%.  As a mother to a child with apraxia herself, Sharon automatically had 50% of my trust, and the other 50% was earned very, very quickly.  Sharon cared.  That’s the bottom line.  She has an incredible gift for bringing people together and getting people support. I cannot tell you how many times I thank God he gave this world a Sharon and her son Luke.

    That’s why her stepping down announcement was shocking.  She said it was for the good of the non-profit, and she said these changes happen, so we all trusted her like we always have.  We meaning the base.  There is a base of CASANA supporters spread out across North America, and she connected with us on some level. That’s what made her special.  She lives in Pittsburgh but could make these sincere and genuine connections nationwide that made people like me want to give 100% in helping CASANA.

    We all tried to take it in stride.  To say we were shocked and devastated was an understatement.  We all had no idea this was coming. We loved Sharon though, legit.  It’s weird to think you can love someone you have only met a couple times, but I guess as I said, that is her gift.

    We waited almost with baited breath who the new interim director would be.  Let’s be clear, we all knew no one could replace Sharon.  No one.  It’s like a dad who says no man will ever be good enough for his daughter……that’s the kind of love we have for Sharon.  She’s just that important to us. However, when the interim director was announced there was no mention of apraxia.  No connection to it at all.  If you remember, I told you Sharon had my first 50% trust because of that alone.  The resume was impressive.  This woman knows non-profits, so that’s good…..we guessed.  We all tried to convince ourselves someone who has no connection to apraxia can fill Sharon’s hole, and then we all started to panic.  Silently at first, but then slowly we started whispering to each other.  In tandem, Sharon seemed to be pulling away.  She told people she wasn’t going to be at the apraxia conference or the apraxia walk. Things she had always done in the community now were leaving too.  We all didn’t understand.  Had we burned her out?  Was she done with apraxia once and for all?  How could she seemingly turn her back on us?

    One apraxia mom and CASANA supporter told me reading about the new director was like meeting dad’s new girlfriend for the first time.  It’s funny, but unfortunately, there is nothing funny about that feeling.  We all started feeling hurt.  Would this still be the CASANA we once knew?  It felt like the heart was gone now, and with no heart, there isn’t much motivation.

    I decided to bring it to Sharon.  I knew she would be hurt but sometimes when you love someone and you value the relationship with them, tough conversations have to happen.  This is true with a spouse, a mom, a sister, or a good friend. I have found that to avoid a tough conversation, in many cases means to avoid the truth.

    This post does not need to outline every particular, but what it is meant to do is to let the base out there….our apraxia tribe know….you guys, we’re going to be okay.  Sharon’s heart is not out of apraxia.  In fact, it cares more than I ever thought possible.  Her decision epitomizes the saying, “If you really love something, you have to let it go.” Her decision is like a parent who must let their children fly on their own.  They cannot be successful their entire life under their parent’s watchful eye.  A child is reared to eventually leave and flourish on their own.  Isn’t that what we’re all trying to do with our children with apraxia?  Give them the tools to fly on their own?

    Sharon sent me these two articles and if you, like me, had wondered how Sharon could seemingly cut all ties, these explain why.

    Founder Syndrome can take down a non-profit

    Strategies for Handling Charity Leaders

    I didn’t know anything about non-profits before.  I didn’t know founders no matter how well-intentioned have ran their non-profits into the ground.  I didn’t know that even when trying to step away and do what’s right, there is still a risk of running it into the ground.  I just can’t imagine that would happen to CASANA, but that’s the problem and that’s why I’m not the founder.  Sharon did know, and that’s why she had to have the strength to let it go.  She had to dig deep and admit her own shortcomings, and she did this so CASANA would continue.

    I should have trusted her like I always had, but I was sad and hurt, and it’s hard to think clearly in those moments.  Emotions take over.   How silly is it to think a woman who started a non-profit and dedicated 17 years of her life to it would just walk away without any doubt, worry, or honestly…agony.

    Sharon’s vision has always been big, OBVIOUSLY.  We all love her so much because of her selfless and unending support to all of us and our kids.  Of course then it would only make sense that this decision too was selfless in nature.  To walk away from something you created  from the ground up in the hope that it will grow bigger and help more people takes a depth of character, strength, and humility not many people possess.  It should come as no surprise to us though, her base, that it was the driving force behind the decision.

    I want to reaffirm my position as an apraxia advocate and CASANA warrior in spite of the big changes.  We are all working out here tirelessly so that CASANA will grow……and now we have to trust Sharon, as we always have, that this is the way to do it.  I’m happy to say I emailed the new interim director Michele Atkins, and she responded immediately and positively and seemed open to hearing from me.  I would encourage you all to do the same.

    Sharon will still always be a driving force in my work on behalf of CASANA.  I will carry her support and love she showed to me and countless others every time I mention the name CASANA.  I ask you all to do the same.  CASANA is still the organization we believe in.  It still has a board of directors and staff that Sharon brought on who are apraxia warriors themselves.  I do admit in my sad moments it felt the heart left, but the heart was bigger than we could even imagine. The heart still beats for CASANA but recognized for it to grow it had to step aside.

    I just want to take a minute to list anonymous quotes from the “base” spread throughout the US as to Sharon’s lasting impact on us all.  This list is compiled by not one, but many who she touched throughout North America.  Some were taken from FB comments and some were specifically solicited; however all are sincere and representative of Sharon’s lasting impact.

    “A public shout out to an angel in my eyes…..I have learned amazing things from CASANA and it is now part of my soul.”

    “Your accomplishments helped me win a proper education for my apraxia child.”

    “You changed the world for children who struggle to speak.”

    “I feel so blessed to have meet you and received such warmth, love and concern for our family.”

    “Sharon thank you for paving the path you have to bring apraxia to the forefront.”

    “Thanks a lot for you dedication! You have changed my life and children in Brazil who struggle to speak!”

    “What a legacy you have created!”

    “So beyond thankful that our paths crossed all those years ago. You have changed my life.”

    “My family and I are so incredibly grateful for your vision and passion to help children families and clinicians.”

    “CASANA has been an amazing place for me to find a home and friends when I needed them most and you are the reason for that.”

    “Thank you. You have given my family and child a roadmap to giving my child a voice. I can’t thank you enough for that.”

    “Thank you for EVERYTHING you’ve done to help our kids find their voices! I will be forever grateful that our paths crossed during my son’s apraxia journey. Your knowledge, empathy, and “light at the end of the tunnel” attitude always gave us such hope during times we felt so hopeless.”

    “Thanks to your contributions, countless children have found their voices!”

    “I always think of you as a pioneer. You have charted a new way of helping families deal with the tremendous impact of apraxia.”

    “Thank you so much for choosing to devote your brilliant mind, your determination and your huge, huge heart to making the world a better place for children with apraxia.”

    “YOU are one of my personal heroes and you will always be a part of my heart.”
     

    “I trust you enough to let you go.”

    “Sharon has been my gravity. Those times in this apraxia journey when I wanted to spin out of control Sharon would reign me in with her calm voice of reason and experience. She has given me direction using a strong enough nudge to get me started without pushing me away nor crushing me with her strength. Mine and my son’s lives have been forever been changed for the better thanks to the force that is Sharon Gretz. Thank you!”

    “I wish I could give you a big hug and thank you in person for everything you’ve done, not only for us personally but for everyone. If it wasn’t for CASANA, I don’t know where we’d be. You will truly be missed. I wish you the best of luck and pure happiness in your future endeavors!!”
     
    “How does one find the appropriate words to thank someone who has impacted their life on so many levels? Sharon, my life and my son’s life changed from one click on the computer and when I first met you I felt like I was “home”. You have been my anchor for 5 years and I would never be able to advocate for my son the way I do if it weren’t for you. Thank you for being such a wonderful person to have along side of our family during this journey”
    “I know I’ve told you this a thousand times, but it will never be enough. Thank you, from the bottom of my heart, for all you have done for me and my family. I never knew how much one person could have an impact in so many lives until I met you. You truly are the Mother Teresa of Apraxia.”
     

    “When I was floundering under water, you pulled me and countless others up for breath time, and time, and time again.  I will never for the rest of my life forget that kindness you showed me, and I am forever thankful God made a Sharon and a Luke for this world.”

     

    To honor Sharon now is to honor her life’s work and achievement that has helped all of OUR kids and countless others, and that is to continue to support CASANA, because in the end what matters is that EVERY CHILD DESERVES A VOICE.

     

     

     

  • Apraxia, special ed, and grad school. One woman’s remarkable tale.

    Apraxia, special ed, and grad school. One woman’s remarkable tale.

    One day I was perusing The Mighty to see if any new apraxia articles had been posted, and I ran across an article by Kelsey Belk, a graduate student studying to be an SLP.  I was so inspired by her article I just had to reach out and thank her.  I found her on facebook and saw that she was currently attending the University of Northern Colorado! I live in Colorado! Can anyone say coincidence, and as a reminder, you all know I believe they are signs and so I took it as a green light to contact her.

    Kelsey, thank you so much for writing that article!  I plan to save it and have Ashlynn read it one day.

    Let’s start with what you remember about speech therapy? When did you know you had apraxia?  Do/did you have any co-morbid disorders aside from apraxia?

    I was diagnosed at age 2 with apraxia. I also was diagnosed with SPD and dyspraxia in my early toddler-hood age as well. In late elementary school I was diagnosed with ADHD and Oppositional Defiant Disorder.  As I am getting older I keep getting diagnosed with more psychiatric and learning disorders. I really want to do research on the possible relationship between childhood apraxia and a later diagnosis of psychological conditions!

    What was your school experience like?  Could you tell us how you did academically and if it affected you socially?

    I have always been a very highly motivated student and am a huge social butterfly – I actually cannot stand the idea of being alone. In elementary school I did rather well with the accommodations the school provided. It wasn’t until later that I realized how big the gap was between my peers and I, especially in reading and writing for me. In high school I started to receive worse grades and this really negatively affected my self-esteem because I didn’t understand why. I felt like I was putting in double the effort than my friends, but always got worse grades. This is when I went back to get more accommodations and was re-evaluated and was told I had all of the same results as a severe dyslexia case, only was able to read rather fast therefore my poor decoding/reading/spelling/phonological awareness was tied to my apraxia. Ever since then I have been receiving extra help such as a note-taker in class and all my books on an audio file. It is not perfect, especially in college. Most of my peers will skim read, but I cannot do this and have to sit and listen to the entire 100 page textbook chapter – but it still makes it much easier than without the accommodations. Overall I have been very successful in school, but it has definitely been a huge struggle.

    My social life is more difficult to describe due to some of my co-morbid diagnoses that affect social relationships. In elementary school through high school I had amazing friends, although seemed to change friend groups frequently to find these friends. However, I also had really negative relationships. I was terrified to talk to adults because they could never understand me – which affects me to this day. Kids were always carefree and often did not even notice a difference. I did have some bullies though – I remember particularly having kids make me repeat things I could not say (like rabbit and railroad). I did really well to not let this get to me though! When I got to college I met all these new people from all over the world. This led to more issues with people not being able to understand me, and I often got asked “where is your accent from?”. I never had an issue making friends growing up or now, but I do have issues with some of the less accepting people. But, it showed me who the good people were and has allowed me to make amazing genuine friends that I may not have found otherwise!

    How has apraxia affected your life?  Do you still have residual struggles?

    Apraxia has definitely shaped me to be who I am.  When you have to put in so much effort just to play “catch-up” at school, it will definitely change you. I had one speech therapist that I loved, but many I did not like which made me not like school on speech days. It has affected me academically and socially, as described above. I am lucky to have had great support systems growing up that allowed me to succeed academically and made me want to go to college. I know that this is not the case with many special ed kids, because you just get so burnt out. It is exhausting to act “normal”. Even to this day I don’t think my professors understand that half of my cognitive energy goes to my talking clearly, focusing, and reading – so in class when I have to take breaks I really need them. I get home completely exhausted everyday, and then have to focus on homework. People forget that disabilities don’t disappear, and it is a constant struggle. I definitely have residual struggles, like mentioned I get asked where my accent is from or I am asked to repeat myself often. Most noticeably, it is in my reading or SLP tasks, because that is what I am studying. Apraxia has greatly affected my self-esteem – I refuse to talk on the phone, get defensive quickly about my speech, and still get scared to make presentations/talks. Last year I decided to go back to speech therapy to try to fix these speech errors, and made some progress on the ‘ai’ vowel however I am to the point I am just going to accept these speech errors as part of me.

    What made you want to become a speech/language pathologist?

    I always wanted to work with kids, but did not really want to be a teacher. I became very interested in this field and just stuck with it! I particularly love the Deaf/hard-of-hearing population. I think it is great to help someone communicate – as social connections are so important. I also have felt that the current model is not often what is best for the child – and I hope to change that. I feel like this field overlooks mental health way too often, even though it is so hard being a child who is different. I hope to work to combine the two fields more to help children succeed in every part of their life – most importantly making them feel valued and happy. I also think we often assume that children need to be like ‘us’ – look like us, talk like us, walk like us, etc. I don’t think this is always the case. I think it is important to see the child as an individual and help them succeed in the modality best for them. For me, I need accommodations such as audio books – no amount of therapy would fix my problems. For some kids this may be ASL or an AAC even, so I hope to change the view so speech therapy is actually centered around the kid.

    My daughter is 7 and currently struggles with what seems like every motor task.   What advice would you give her and all the other kids who struggle with apraxia and related learning disorders?

    I think it is important to not compare yourself to others. The school system is set up to where everyone is pressured to be at this perfect level – but that is not real life. In real life everyone has strengths and weaknesses. I know that I will always have weaknesses in these areas – and it will always come back (such as driving – it is so hard!). But, I also have learned to find my strengths – which are ones you probably share. I learn to persevere – when someone tells me I can’t so something I work as hard as possible to show him or her I can. I am creative – having disabilities makes you find new and creative ways to complete tasks. And most importantly, I gained strength in having empathy. This one seems so simple, but is one so many people lack.  Just remember to never give up – I did. I dropped out of speech in 6th grade because I wanted to be normal and I regret it. In the words of Taylor Swift, “haters are gonna hate hate hate”. Don’t let other people get you down, do it for yourself! Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.

    What advice do you have for parents?

    Accept your child for who they are. Yes it is good to practice correct motor tasks and speech at home, but also remember they are kids! They need a break and need to be able to talk to you without being corrected. Find a balance between the two. Let your child make decisions too – explain the IEP to them and let them give their important in what they want to learn and work on. And do not be ashamed to seek out mental health help (if needed)! There is absolutely nothing wrong with therapy; it can help your child grow in self-esteem and self-confidence. Also remember to not put all the pressure on yourself, you child goes to an SLP/OT/PT/specialist for a reason, just enjoy being a parent!

    There is so much good advice in here Kelsey! Thank you so much for your candor and honesty.  You sound so much like my daughter.  She’s a huge social butterfly too, and works harder than everyone else around her.  You give me so much hope for her!

     

     

     

     

     

     

     

  • Them some big holes to fill: A tribute to Sharon Gretz

    Them some big holes to fill: A tribute to Sharon Gretz

    I cried last night.  Not just a few tears either.  Big, ugly, chest heaving tears.  I think my husband was a little taken aback.   It’s not that’s he’s never seen me cry, but it’s not very often and it’s usually because something really big happened.  They can be happy or sad tears, but the events that inspire a full on cry have usually been big, like the birth of our children, Ashlynn’s dx of apraxia, or the time I thought my Grandma was dying.

    “Sharon’s leaving!!  She’s stepping down from CASANA.”  I wailed.

    In case you don’t know, Sharon Gretz is the founder of the Childhood Apraxia of Speech Association of North America (CASANA), the non-profit I now work tirelessly to promote.

    “What’s the point in being the walk coordinator now???” I demanded at Cody.

    “Laura, it’s not like CASANA is going away is it?”

    I shook my head and managed to get out they are hiring an interim executive director until a permanent one can be placed.

    “What will we all do????  She helps all of us.  ALL of us.  Who is going to care that much?  Who is going to answer all of our questions in the facebook group, and if they do, who could possibly be as knowledgeable as her???  Who could possibly be as selfless as her?”

    I told you friends, it was a big, ugly, irrational, downward spiraling cry-fest.   At the very least, I think my dear husband finally understood why I do as much as I do for apraxia and CASANA now.  Not that he didn’t before, but it’s just, I don’t think he realized why I was 100% all in.

    I first had indirect contact with Sharon before Ashlynn was ever born.  I was a new SLP working in the schools and a Kindergarten boy showed up on my caseload nonverbal.  One day he named all the letters of the alphabet, but he could not string any sounds together intelligibly to save his life.  I remembered as an SLPA helping my mentor treat a kid with apraxia, and I immediately was suspicious.  I googled it and found apraxia-kids.org.  I found “start here” articles on how to treat CAS, printed them out, and changed my treatment plan.  He said his first words that year to his dad.  That family thanked me, but little did they know, CASANA (Sharon) changed the path for their son.

    It’s difficult to say, but CASANA and Sharon are almost synonyms in my mind.  It’s not true of course.  CASANA has an amazing staff, but I can’t help but think even they wouldn’t exist had it not been for Sharon.

    The next time I had contact with Sharon, it was direct.  Ashlynn had just been diagnosed with CAS and I found a parent group on facebook.  Every time I posted a question, Sharon would usually respond.  They were always the type of response that makes someone sit up and listen, because this “Sharon Gretz” really seemed to know her stuff.  I had no idea for quite some time she was actually the founder and executive director of CASANA who would answer me and countless other parents, sometimes at night during her free time, to help us and give us support.

    After a few months CASANA announced they were having their national annual conference in Denver. Sharon encouraged everyone from the facebook group to come and say hi to her.  I bought my ticket and showed up with my husband.  I remember being sooo nervous.  Oh my gosh, the woman standing there was amazing.  She had a child now resolved with CAS, founded a non-profit, and basically knew everything about apraxia there was to know in the world right now.  What would I say to her?

    I’ve written about it before, but I will never forget.  She encouraged parents to put a picture of their kiddo in their badge and she pointed it out as we were talking.  She genuinely cared about my kid and wanted to know about her.  I started embarrassingly pouring out my heart to her.  I had tears in my eyes and was looking down the entire time.  When I looked up she had tears in her eyes too and was staring right at me.  She gave me a hug.  I’ve never felt more understood in my life.  I had all this guilt about being an SLP and my daughter having apraxia, and I had no other person I knew in my position.  She was the closest because she had a doctorate in speech and she relieved me of so much guilt in that moment.  I had found my people.

    From there I had a face to the name.  Every time she responded to a post on facebook I was in awe of her dedication, compassion, and genuine love for all children with apraxia.  She was the first person to cheer anyone’s success story, no matter how big or small.  From a child saying “hi” for the first time to a child learning to read, Sharon celebrated them all with the parent.  I tried for awhile to follow every post and do the same, but there are a lot of people in that group now, and it was very time consuming.  I had a deeper appreciation for Sharon.  This wasn’t a job to her, this was truly a vocation, and it wasn’t just the facebook group.

    CASANA funds needed research so we know what treatment approaches are best and most effective for kids with CAS, which is important because traditional treatment approaches for speech will not work for CAS.

    CASANA has set up a network of support for families via the facebook group.

    CASANA funds iPads and therapy for kids with apraxia to help families crippled by the cost of therapy which is usually not covered by insurance.

    CASANA provides education to professional SLP’s who never received the right training in grad school (despite thinking they did) to treat this rare but treatable severe speech disorder.

    CASANA helps set up walks nationwide to honor our kids.  They receive medals and are rewarded for all of their hard work that no one else recognizes but their family, therapists, and teachers.  They get to meet other kids like them, and know they are not alone.

    CASANA is more than Sharon, but she is the heart.  She is…or now was.  Change is hard and the unknown is scary.  It felt like the heart of CASANA died when I read that announcement, but after my ugly cry I’m rational once again and I know my husband’s right when he says she put all the supports in place.  We are not left without.  We have a network of people for support.  Research will continue.  Walks will continue.  Education will continue.

    I know it will, but it still makes me sad it’s without Sharon.

    Sharon epitomizes the quote “Be the change you wish to see in the world.”  She never wanted anyone to go through what she went through with her own son, which was lack of resources, knowledge, and awareness of Childhood Apraxia of Speech.

    Someone wrote “What a legacy!” and yes it is.  Through it all Sharon,  you remain one of the kindest, most humble people I have ever met.   That will never be replaced.  You have accomplished more in 17  years than other people could hope to do if given two lifetimes.  What a blessing you are to us, to this Earth, and especially to your son, who will one day realize the extraordinary (and I mean EXTRAordinary) love of his mother.

    Sharon, when I was floundering under water, you pulled me and countless others up for breath time, and time, and time again.  Eventually I found my footing on dry ground, and knowing I could never repay you, I resolved to work tirelessly for CASANA and for kids like mine who deserved a voice.   I will continue to do so, and pay it forward to every parent who crosses my path, because I know what it’s like to literally feel saved by one person who just took 5 minutes of their time.

    You are a living, breathing example of all of my favorite quotes that I’ll share below.  Let’s have a toast.  Raise your glass.

    Here’s to you Sharon.  May you find some peace and relaxation.  When you close your eyes to sleep, may your dreams be filled with the satisfaction of knowing you not only helped your son, but in doing so, have set up an infrastructure to ensure every child like him has the opportunity to find their voice.  May your next journey be filled with blessings.  Most importantly, don’t stay a stranger.  Remember to come back and visit.  We are your people.

     

     

     

     

     

  • Apraxia would have destroyed me

    Apraxia would have destroyed me

    I often think about what would have happened had it been me who had apraxia, dyspraxia, SPD, dysarthria, and a learning disability when I was young.  It’s pointless I know, but I was/am a perfectionist.  That’s not a good thing.  I learned early I was really good at spelling, reading and writing, but math I had to work for.  I won a math award in 3rd grade and I looked at the teacher, Mrs. Plummer,  like she was crazy.

    “I’m not good at math.  Give this to Keith or Jimmy.”  She maintained I was good at math, but I didn’t believe her and I never cared about that award.  I knew what I was good at, and it wasn’t something I had to work that hard to do well.

    I think about that because Ashlynn has to work at everything to do well.  There’s not like one thing that comes naturally to her….well actually social skills do, but she’s behind in that too only because of her other issues.  I had to work at math so it made me mad and I didn’t want to try, despite the fact I could do well.

    Her disability would have destroyed me.

    She has the best of my husband’s personality THANK GOD.  She doesn’t get embarrassed, she attacks everything, she’ll try anything, and she’ll never give up until she conquers it.  That’s a page straight up out of her daddy’s book.  She’s in a first grade performance Tuesday, and I was watching the practice with the art teacher.  I said the songs were hard for a kid with a speech problem (bear necessities, supercalifragilisticexpialidocious) and the art teacher smiled and said she loves Ashlynn because she just goes for it.  I smiled.  It’s true…she does.  She always has.  I can still cry thinking about her preschool observation where she couldn’t jump on the trampoline so she smiled and marched instead.  All the kids were encouraging her to jump like them….

    and she couldn’t bear walk so she hung across a teacher’s arm upside down to at least get a feel for the movement….still smiling.

    When she rode her tricycle and couldn’t pedal she never stopped trying……and not only trying, but smiling. Oh, and guess what.  She learned all these skills eventually, on her own time.  She walks, she runs, she jumps, she bear walks, she skips!  She puts me to shame.  She puts that third grade girl who decided math wasn’t her thing to shame.

    Well not anymore.  I’m not sure anyone becomes a parent to be inspired by their child, but she has inspired me and made me better.  There are things I do now I would have NEVER attempted.  Every time I’m scared or nervous, I think about Ashlynn.  One year on a camping trip everyone was cliff diving.  I was terrified as I stood on the cliff, but I thought of Ashylnn and I’m on video jumping and while I’m in the air you can hear me say “for Ashlynn.”

    Tonight we were watching “Zootopia” and a song came on “Try Everything.”  Ashlynn started clapping and dancing around the kitchen.  She always dances like no one is watching.  Isn’t that phrase people have to try and follow?  Well, Ashlynn just lives it.  It’s her essence.

    So I started listening to the lyrics and I’ll be damned if this isn’t that girl’s theme song.  I downloaded it immediately.  (I’m also admittedly a Shakira fan so I was hooked anyway).  We put it on outside and her AND Jace were going crazy.  It’s a great song.

    “I messed up tonight, I lost another fight
    I still mess up but I’ll just start again
    I keep falling down, I keep on hitting the ground
    I always get up now to see what’s next

    Birds don’t just fly, they fall down and get up
    Nobody learns without getting it wrong

    I won’t give up, no I won’t give in
    ‘Til I reach the end and then I’ll start again
    No, I won’t leave, I wanna try everything
    I wanna try even though I could fail
    I won’t give up, no I won’t give in
    ‘Til I reach the end and then I’ll start again
    No, I won’t leave, I wanna try everything
    I wanna try even though I could fail

    Look how far you’ve come, you filled your heart with love
    Baby, you’ve done enough, take a deep breath
    Don’t beat yourself up, don’t need to run so fast
    Sometimes we come last, but we did our best”

    So many times she has come in last but she gets back up and tries again. As a witness to this strength I have no choice but to do the same.  Look how far you’ve come, but don’t keep looking back.  Look up and I’ll walk next to you guys through anything and I’ll pick you up when you fall.

     

  • The Rise

    The Rise

    I have Ashlynn on a new game plan.  We had to take a break from her private speech because of unforseen financial issues in our life, but now we are back and better than ever.

    She’ll be seeing her awesome private SLP again on Tuesdays (who just happens to be my mentor, friend, and speech mom), and then Wednesdays we have insurance finally paying for 20 sessions, which is not to mention the two sessions she gets at school.

    Last night my husband took her in to the new SLP and she was given language testing.  Knowing I would never be satisfied with his summary, he prudently told the SLP to call me personally.  I had already emailed, called and left messages (oops), but hey.  I need to know this stuff.

    Well, tonight she called.  She was lovely actually.  Experienced.  Moms of kids with disabilities will totally feel me when I say, “I instantly had  a good feeling in my gut about her.”

    She told me she tested Ashlynn in language. I was anxious to hear the results.

    Before I get to that.  Let me set the stage really quick.  Two years ago, Ashlynn was tested at school as part of a re-eval.  The ONLY area, and I mean the ONLY area in the average range was her articulation skills, and even then, it was barely.   Language testing was no exception.  The one area kinda close to at least low average was a the receptive vocabulary test where she was to point to pictures depicting certain vocab words.  It was STILL slightly below the average range.

    I was devastated. Despite so much work at home, Ashlynn’s expressive and receptive language skills were tested to be significantly below the average range.  Beating apraxia at that point seemed pointless.  When Ashlynn actually spoke, most people could understand her now, but her language development was so delayed she still hadn’t really found her voice.  She spoke in scripts she had been taught. Sentence formulation consisted of scripts she’d practiced in therapy. If you have any idea about apraxia, then you know how jacked up it is to wish your child *just* had apraxia, and you might have a greater appreciation of just how damn freaking hard that sweet little girl has to work.

    BUT

    Fast forward to today.  The day I talked with this new SLP.  Ashlynn scored a standard score of 90 and corresponding percentile rank of 25 on the picture vocabulary test!!  DEAD average for receptive vocabulary skills.  My heart was leaping out of my chest.

    With a sympathetic and somber voice, she told me Ashlynn had just barely squeaked in the average range for a measure of relational vocabulary, which is telling how two things are alike.  My heart started singing and I think I took her aback.  I had to hear it again. Wait, she scored in the average range for what?? Tell me again.  Well, it’s the low average range, borderline really, but yes……

    I zoned out.  I checked out and started cheering.  OMG.  I work in the schools with her school SLP and this is what they have been working on!!  It’s working!!  She’s doing it!!  We are climbing!! We are RISING!!  We are OVERCOMING!!  I texted her school SLP.

    “Private speech gave Ashlynn the TOLD and she scored in the 25th percentile for picture vocab and 16th for relational. That’s ALL you.  Thank you for working with her.  I can’t believe it!”

    Her response was golden: “I believe it!  Ashlynn needs the gift of time to develop and mature.  Her brain is working hard right now but it will get easier and better!  Proud mama time!!”

    Um…people..cue the waterworks.

    It took me some time, but I finally found Ashlynn’s village.  I can’t help her overcome on my own, but I found a village who not only believes she can, but is helping her to do it.  There are so many working parts.  There is general ed, and special ed.  There is school speech and private speech. There is private OT and school OT.  There is physical therapy, extracurricular activities, and a legion of family members praying for her.

    Most importantly though, there is Ashlynn.  She is a fighter.  She doesn’t look like one, but she is.  That face is deceiving.  She has this understated determination, this quiet ferocity, and this unceasing resilience.

    It’s good to look back and see what we have conquered.  At times though, it’s too overwhelming to look up and see what’s left ahead.  So in this present moment, we will look a few steps in front of us and as my dad always says, “just keep your head down and working,” and one day, we will reach the top.

     

     

     

  • Apraxia and the village.

    Apraxia and the village.

    I work in the schools a few days along with my private practice work.  I say I work in the schools because I like working in Ashlynn’s school, and that’s partially true.  However, I have always in my career had at least one child on my caseload with apraxia in every school in which I have worked.

    If you have a child with apraxia, you’re probably thinking, “what’s the big deal?”

    If you are an SLP, you might be thinking, “Wow!  I’ve only ever had one, or none, or….”

    Anyway, if you are in the apraxia community, you know about the “apraxia coincidences” and if you know me, you know I don’t believe in coincidences.  So part of me feels like I’m put at a school I am at because I can be of service and have a connection to a particular child, with Ashlynn’s school being no exception.

    Currently I have a 4th grader that I see and I can only say so much because of confidentiality, but I love this boy.  Actually, I wrote about him once.  You can read about it here, but it turns out, I was right.  He’s gifted.

    Ha!  As I went to link that last post, I had actually included this graphic two years ago.  How things come full circle right?

    Anyway, his nonverbal IQ is off the charts and now he’s in the gifted program.  However, he’s a fourth grader and still can’t read or write, such is the extent of his disability.  I can’t imagine being so smart, but being unable to read or write.  Such is his life.

    We have every AT tool at his fingertips.  Technology though still hasn’t totally caught up to the extent of his disability.  His grades remain sub-par, and he is unable (and many times defeated so he’s unwilling) to produce any written work.

    There are sooo many people in this boy’s life who believe in him and who want to help him.  Meeting after meeting takes place behind the scenes.  I’m serious.  If you don’t work in the schools, you have NO idea the mobilization and time occurring on behalf of our children.  I know his parents don’t.

    Anyway, after at least two major meeting of the minds with every professional expertise (OT, Speech, SPED, gen ed, ATRT specialist, TA), we finally came up with a plan we thought will help him become more independent with his school work regardless of current reading, writing, or spelling ability.

    We set a meeting date of today with ALL of these above listed professionals and the child.

    Let me take a quick digression.

    A week ago, I posted on my SLP Mommy of Apraxia/Dyspraxia Fb page that the librarian at the school stopped me to show me this book called “Fish in a Tree.”  The book is written by a woman who had dyslexia as a child, and writes a fictional novel based on real life events about her life and the people in it.

    The librarian read this one chapter to me the other week, in which the girl’s teacher listed famous minds of our past and current generation.  They all were brilliant, but as it turned out, they were all believed to have had dyslexia.  I was so inspired.  I couldn’t WAIT to read it to my 4th grader.  The librarian was going to read it aloud to the entire class during library time, but she wanted me to read it to this child first so he knew we were all thinking of him.

    Today I got the chance.  I asked him if he knew the names of the people and what they were famous for.  He didn’t disappoint.  He can’t read, but he knew most of them as I read them to him:

    Thomas Edison? – “Invented the light bulb”

    Alexander Graham Bell?  – “Invented the telephone”

    Albert Einstein? – “Really, really, really smart.” 🙂

    Walt Disney? – “Made Pluto!”

    The list went on, and as I read the pages to him, some he knew and some he didn’t, I swear I could see a spark glow in his eyes and it was everything I could do not to cry.  People, this boy is as brilliant as all these people I was reading to him.  I honestly believe that, and it’s not just me….EVERY professional who works with him feels the same way; but if  you can’t read, and you can’t write and you’re in the fourth grade, you don’t feel that way.

    I barely got through reading the entire thing without completely breaking down.  When I finished there were stars in his eyes.  I’m telling you.  Bright, bright stars, and he smiled as he said, “Wait, all those people were like me!  They couldn’t read, but they were super smart and they invented stuff BECAUSE they weren’t typical.”

    I nodded my head.  That may not be a completely accurate assessment but I sure wasn’t going to contradict it, would you?  Oh, and I should mention, his comment came after a therapy session we had a few weeks ago in which I showed him Mikey from Mikey’s Wish who was talking about “neurotypical” and “neurodiverse.”  I knew he was alluding to this because he was inspired by the idea of being “neurodiverse.” (Thanks Mikey).

    As fate or coincidence would have it (coincidences aren’t coincidences), let me take you back to the meeting of all the professionals, the village, that helps this 4th grade student.  We scheduled another meeting, this time to include him.  It just happened to be that it was right after I read him those excerpts on these brilliant minds needing to find another way to express themselves.

    I took him to class where the meeting was about to take place, and his awesome 4th grade science and math teacher, who had already prepped him (for being in such a daunting meeting by himself with so many adults) told him we are here because we believe in him, and sometimes great minds have to find another path to greatness.

    His eyes lit up.  “Like Albert Einstein, and Disney, and the guy who invented the telephone!”

    People, the tears were in full force behind my eyes, but I still didn’t let them go.

    As the entire special education and general education team piled in, I watched this incredible strong and resilient 9 year old, listen to the plan set before him.  He was surrounded by people who loved him, but still.  He was outnumbered by 1:9 and he listened to our plan on how to help him read and write using technology, and, get this….his VOICE.   Yes, his VOICE would be a huge part in his written output via voice memo, and that’s possible, because he has one.

    We are all under no illusions.  We know this will be hard for him.  We know he will be frustrated and maybe even resist.  But literally, 8/9 people at that table believe he is capable (the 1 out-liar being him), and as one of his reading specialists said, “Maybe he doesn’t believe he can do this, but hopefully he will remember all the adults who think he can and it will keep him moving forward.”

    I was so proud to be sitting there as part of his team….his village; because we all know, these kids need a village.  I was trying pretty hard to reign in my emotions.  I thought about how lucky Ashlynn is to have this village too.  I don’t need doubters in her corner, I need believers; and I really know we have that.

    Oh, and about my 4th grader.  Believe me when I tell you he has BIG ideas.  His ideas cannot be adequately explained through his reading, his writing, or even his voice. I predict one day these BIG ideas will be turn into something even bigger.  I look forward to seeing it.