Tag: Ashlynn update

  • There are no easy answers, only tough choices

    There are no easy answers, only tough choices

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    I didn’t expect to cry today,  yet that’s how the cards fell.  I dropped Ashlynn off at school today, and asked her teacher if she had talked to the OT about changing her name card to all capitals per the private OT recommendation given in my last post .  Her face kinda dropped and she said she had talked to the OT, but she wanted to talk to the SPED teacher first, could we talk after school?

    Oh sure, I said.  Inside though, I felt that pit in my stomach.  They don’t agree with that.  I guess I’ll find out why in a couple of hours.

    I went back to school and the SPED teacher, teacher, and SLP were there.  The SLP kinda accidentally walked in, but I had her stay.  So basically in a nutshell, there are two theoretical professional recommendations for this issue.  The SPED and classroom teacher both have research to show that kids need to be writing their name in both upper and lower case because that will be the automatic expectation when they go to Kindergarten.  At a recent conference, the teacher said the one of the speakers pleaded that if they are still focusing on uppercase, to please at least expose them to lowercase because lowercase letters are what they will predominantly see in literacy.

    The OT’s position (and I ran this past the school OT too who agreed with my private OT) is that developmentally, uppercase letter formation comes before lowercase.  Basically, uppercase letters contain more pre-writing strokes like basic horizontal, vertical and diagonal straight lines that are still hard for Ashlynn to visually interpret and copy correctly.  It’s a problem with the praxis, or motor plan, not a problem with her perception.  So for example if she sees an M she can point to an M not a W, but when she goes to write it, it looks completely messed up.

    Hmm.  Sounds familiar.  Sounds like speech apraxia.  She understands what people say. She understands correct and incorrect production, but when she goes to say it, it’s all messed up.  Apraxia.  Yup.  Nothing new there.

    Back to the situation though.  The SLP voiced what I was thinking  She sees writing and literacy almost as two separate entities.  Why can’t she write in uppercase but still be taught and exposed to both?

    Well, they felt that writing reinforces reading and vice versa.

    Okay, but my kid could write her name almost legibly last Thanksgiving, and this Thanksgiving she can’t write it all. Her motor plan is completely confused. Don’t you guys see how concerning that must be to me?

    But we’ve gone half the year doing it this way, the teacher said.  I keep thinking it’s going to click.

    SPED teacher: Yes and again, don’t you want her to practice this early so she gets extra time with these skills?  She needs to be writing two sentences with correct punctuation, which includes capitalizing the first letter….by the end of Kindergarten.

    Insert lump in throat. I can’t talk.

    We just want to get her ready for Kindergarten.  That’s our job.

    Me: Lump still in throat.  “So, I’ve been told by experts in writing development that they must learn uppercase before lowercase.  I have personally seen the regression in writing her name.  I’m not talking about literacy.  I’m talking about writing, and, do you think, I mean, I hate to say this but

    this is hard for me to even say but

    Is it really realistic to think that Ashlynn will be able to learn 52 graphemes by the time she hits Kindergarten when it took her a year to consistently write 5, and now those are gone?

    Silence

    It kills me to say this.  I WANT to say that by having THREE years in Pre-K she would be Kindergarten ready, and now I have to say, out loud to you all, that writing both uppercase and lowercase letters is just not in the cards for her right now.  I hear your research and I appreciate it, but my daughter has GLOBAL apraxia.  Have any of you actually had a child with global apraxia?

    Crying. Nope, not one of them had.  Neither had I, until now.  Ashlynn is our guinea pig, but she’s MY daughter.  What do I do?

    The teacher folded slightly and said she was willing to do whatever I decided, but she did want it to be consistent across disciplines so that she gets the most bang for her buck.  We all kinda left with a question mark and promise to consult with various professionals and come back with our recommendations.

    I left and cried again.

    Such is my journey in GLOBAL apraxia.  When I asked them if they had ever had a student with global apraxia, they all had to admit they hadn’t.  I started thinking. I hadn’t either, except recently.  One out of my 6 kids with apraxia have it globally.  Most have other soft signs, but only one has it everywhere. The three I saw in the schools before Ashlynn only had verbal and some fine motor issues.

    Wow.  I guess since I’m part of a support group online, I don’t see it as rare as it really is.  This is rare.

    REALLY, REALLY RARE.

    Sucks.

    I spent the last 2 plus years thinking if we could resolve the speech, she would be ready for Kindergarten.  I’ve read many books.  Speaking of Apraxia is a popular book, but yeah…only dealing with CAS and SPD. Not global apraxia.

    My daughter fits into two columns: her can do’s, and her cannot’s.  My husband usually lives in the can do’s, and I live in the cannot’s.  Why?  I guess because I feel so crazy responsible for getting her from the cannot to the can, but then when I get to the can, I immediately give a sigh of relief and then go back to the cannot column to work on the next goal.

    It sucks, and today was low.  I had to admit out loud that I can’t remediate the cannot column, because that column contains more than speech.  It’s just too much.  To be honest, the speech was too much too, it’s just that I felt such responsibility and I went on an exhausting mission to specialize in it. However, I can’t specialize in it all.

    I’m vulnerable now.  I have to be a mom now, and I tell people all the time mom’s are the expert on their child, despite all the experts on the various disorders their child might have.  So, I’m taking my own advice, and it’s scary, because what if my decision negatively impacts her entire academic career.

    But, here we are.  Here we are, and I have decided, and I’ve felt all along, the experts in writing, the OT’s, know what they are talking about when it comes to writing, and Ashlynn needs to stick to upper case for writing.

    That said, she will continue to be exposed to both uppercase and lowercase letters, but to write…we have to stick with uppercase.

    I wish there was a cookbook.  Heck, I wish there was some credible info on GLOBAL apraxia.

    For now though, I have to trust my mommy instinct, and my mommy instinct say that although I wish to God…I would wish my life on this Earth that Ashlynn could learn like the other students and handle both upper and lower case; deep down, I know she can’t.  At least not yet.  I know I have to just stick with the uppercase until mastery, and then when she masters it, we’ll cross the lower case bridge when we get there.

    No one said life would be easy, only that it would be worth it, and she is worth it.  There are no easy answers, only tough choices, and today was very hard.

  • I’m never doing enough

    Since I’m an SLP, I’ve been in the meetings where we, as well meaning professionals, give our advice and tips.  Simple and easy tips that seem so easy, but when you have 4-5 people giving you these tips, the weight seems to get a little heavier.

    Such was the case tonight.  My grant finally ran out for my private OT and speech services that I was able to get starting at the beginning of the summer. So for the last OT session, I asked the OT to just kinda look at all the skills and give me an update.

    She immediately started in on handwriting to start.  Handwriting is probably her hardest area right now.  I didn’t want to admit it, but when we did our Thanksgiving craft, I thought she might have regressed.  Plus, private OT has been working more on gross motor skills and core strengthening, and we’ve seen some big growth.  She can finally pedal her big wheel the span of three houses and back, and is able to sit on the carpet in school during circle time without any special seating or weighted blankets.   That doesn’t mean her core is better though.  I observed her in class on her birthday, and by the end of circle time, she was practically mush melting into the floor.

    However, there were improvements….and this is good.

    Back to handwriting though. Long story short, we haven’t been focusing on handwriting.  As she had Ashlynn write her name, the struggle was apparent.  Since I have also worked with this OT, I know her “hmms” and “ok’s.”  They meant Ashlynn was NOT doing OK and she had concerns.  I waited.

    “Have you seen regression in her handwriting?

    Me: Groping for words

    “I just say this because I hadn’t been focusing on handwriting because the school was.  They are right?  Focusing on her handwriting?”

    I was launched back to her IEP meeting.  I remember the teacher saying the kids write their names with the Uppercase AND lowercase letters, and then she looked at the OT and mentioned they could chat since OT’s typically don’t want the kiddos writing in lowercase.

    That was the end of it.  Ever since then, I’ve noticed Ashlynn traces her name everyday, and that papers come home with her tracing her name after someone had highlighted it first.

    I kinda stuttered.  Well, I know they have really been working on drawing a person and getting all the body parts.  I proudly showed her a sample, and the OT admitted it looked good.

    Her name though.  Her name.  Damnit.  I don’t want to admit I saw regression too and now I realize it might have had to do with changing from uppercase to lowercase before she had even mastered uppercase.

    I asked if she recommended staying in uppercase and she said yes.  That would be best, because we’re going to have a situation where she won’t be able to do either.

    Stupid apraxia.  Stupid apraxia.  Stupid APRAXIA.  sigh.

    She works so hard too.  My poor baby. She knows it’s tough, and yet I see her march on.  She tried to smile, act cute, and divert attention, but the OT made her write all those letters….and it was hard, yet she smiled through it all.  Knowing she wasn’t writing them correctly.  She always tries so damn hard.

    I applied for more funding.  I don’t know how we can afford private speech and OT, but I know she needs it, so we’ll find a way.

    You know what’s so hard, is this same OT that is seeing her is my friend and colleague from my old school district.  Before she knew Ashlynn I would talk to her about her issues, and not knowing Ashlynn, she would always say she was sure school OT was enough and that I was probably overreacting.  Assuring me not to worry.  But  then today, the last session until I get funding, her brow was furrowed and she said, “oh I just didn’t have enough time with her.”  It killed me to hear, because it means she sees professionally what I have seen all along.  Ashlynn needs so much help.  As she left, she told me maybe we could plan a playdate over break.  I eagerly agreed and then she offered a freebie therapy session.  She’s such a good friend and I appreciate her charity, but again, it let me know just how serious this is.

    Yay apraxia.  Yay GLOBAL apraxia.

    As I went to help get Ashlylnn ready for bed, I found myself pulling patience from the depths of me because I know she needs it.  She can’t yet take off or put on her shirt.  She’s five.  I think I mentioned in a prior blogpost my son who is 2 takes it off no problem. That’s hard.  It hurts.

    Then, the things she can do, like putting on her pants or socks take a very long time.  Tonight her pajamas had buttons.  I sat on the floor waiting for her to try, and try she did.  It took her 10 minutes to button three buttons, but she never gave up.  Think about that.  10 minutes doesn’t sound like a long time, but just to button three buttons?!?

    Tick tock, tick tock.

    I have to wait though.  I can’t do it for her anymore.  She will never learn that way.  I have to sit there, even though I desperately just want to veg out and not think about her speech, her writing, her drawing, her pedaling, her drawing a person, her feeding herself, dressing herself, oh and I didn’t even mention the letters and letter sounds we work on every night I can.

    And she always comes through. My nerves were frazzled and my husband emerged from her room and said she told him that she buttoned the three buttons by herself but mommy “did this one” (the last one).  She was so proud.

    Like I said, the weight is sometimes overwhelming.  There is so much to do, and when I focus on one thing, it seems we have lost in another.  All I can do is keep on keeping on.  I’ll take my cue from Ashlynn.  That’s what she does and I love her for it.  I just hope I can be the mom she deserves to have.

     

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  • It’s hard to explain how global apraxia affects so much

    It’s hard to explain how global apraxia affects so much

    We went on a Santa Train again this year at Georgetown Loop Railroad.  Ashlynn has never talked to Santa before.  When she was 3, she cried and clung to her dad for dear life.  When she was 4, we went on a different Santa Train, and though she wasn’t scared, she was too reserved to say anything audible enough for him to hear.

    This year a four year old girl was sitting across from us.  As her parents were asking her what she was going to ask Santa for, she eagerly said she wanted another Elsa doll.

    Ashlynn’s not really into Frozen, or any movie really.  Though each year we try, she just has no desire to sit and watch TV…much less a movie.  As for toys, we took her around a toy store three times leading up for her birthday, and though she was mildly interested, it’s just not like the “kid in a toy store” image that might usually come to mind.

    Fortunately, I have my friend Kim, an SLP who also has a son with global apraxia.  I also have a 7 year old client with it too, and interestingly enough, they all are similar in these areas.  They don’t have an overt interest in movies, TV, or toys.  Why?  I really don’t know.  The toys I think has to do with their struggle to play with toys they would cognitively be interested in, but can’t mainuplate because of the gross and fine motor apraxia.  That happened to her last year when she actually asked for baby clothes but then couldn’t put them on or take them off the baby.   To engage in imaginative play is equally as challenging due to their delayed speech and language skills.  Who knows.

    All I know I I started to feel sad listening to this four year old chatter away about what she wanted….until it was Ashlynn’s turn to sit with Santa.  Though he kept asking her what she wanted, what she wanted was to talk.  She asked him “What’s this?” and “What are you doing?” until he smiled and then moved onto another kid.  As he was walking away, she grabbed me frantically and said, “I need presents!!”

    Smile

    Oh Ashlynn.  That’s my Ashlynn and she’s perfect and in that moment I had nothing to be sad about. All she wanted, all she’s ever wanted is to engage people in conversation, and then as an afterthought she thinks about herself.  Even then though, she had nothing specific.  Just presents.  From the outside I’m sure she looks like a typical 5 year old, and it’s hard to explain just how involved her needs are, or how they affect so much.

    However, today, she asked for presents from Santa Clause just like a typical 5 year old and she will find them waiting for her on Christmas morning.

    from the outside in

  • What exactly DO I want to hear at parent teacher conference?

    What exactly DO I want to hear at parent teacher conference?

    I had Ashlynn’s Fall parent-teacher conference for this, her last year of Pre-K.   The teacher gave me a HUGE packet for Pre-school standards for my review, and said she didn’t need to go through all of it.

    Um…okay.

     

    She showed me a picture Ashlynn had drawn the first day of school of a person with her name on the paper, and then another current picture of a person with her name on it.  There was improvement in both.  Okay…..cool.

    Then she said she had an idea to work on the morning routine.  Every morning the kids are to complete a series of 4 steps before the parents leave.  1.) Hang up Coat 2.) Wash Hands 3.) Check in 4.) Write name.

    Despite three months of doing the same thing, Ashlynn always comes in, gets distracted, and needs physical prompts to do each one.  She seems absolutely oblivious to verbal prompting.  It’s not ignoring either.  She is just so engrossed in what the other kids are doing, she loses focus.

    So,back to the teacher’s idea.  She wants me to physically take her to each station instead of verbally prompting her, to hopefully just get Ashlynn successfully completing the routine, and then we can add language.

    Ok….not a problem.

    She seemed relieved I agreed.  I mean, honestly, I’m not too wrapped up in the routine.  I need to know if my baby is making progress.  Is she going to be ready for Kindergarten?  What do I need to be doing at home?

    She really couldn’t pinpoint one thing.  Just kinda said Ashlynn is getting a lot of services to try and catch her up.

    She did say Ashlynn is engaging in collaborative (not just parallel) play, and is using her imagination to make up things.

    Okay….that’s good.

    Oh, and then she said she usually has the kids change seats on the carpet, but she thinks it would be best to keep Ashlynn in the front so she’s not as distracted.

    Okay…sounds good.  She should be getting preferential seating per her IEP, so…. I mean….how is my baby really doing?

    Sigh.

    I don’t know what I want.  The whole thing was underwhelming.  No rave reviews, but then no suggestions on how to help her.

    Not at that meeting anyway.  I gleaned plenty when I finally had a chance to read through the skill sets.

    Let me just pick one out here:

    Early Literacy Skills Assessment:

    Out of 14 pre-literacy skills, Ashlynn has four boxes checked.  🙁

    Damnit.

    FOUR!!! out of FOURTEEN!!!

    It makes me want to cry.  Nevermind, I am crying now.  It’s not fair.

    So, I’m going to tackle those skills.  Comprehension, Phonological Awareness, Alphabetic Principle, and Concepts about Print.

    That’s just reading FYI

    Cody is going to tackle the math part….and that’s a whole other list of checks she doesn’t have that I just can’t bear to look at again.  Thank God my husband is amazing and helps lift some of the burden.

    Stupid Apraxia.  Stupid Apraxia.  I hate apraxia.  I hate this damn disorder.  I HATE IT.  I HATE IT.

    Okay, tantrum over.  Put on your big girl panties Laura.  You don’t see Ashlynn crying about all the work there is to do.  In fact, she’s looking at your right now with alphabet cards in hand ready to learn.

    Alright bug, bug.  We haven’t come this far to raise our white flag yet.  Like I said in my post at the beginning of the year, “Bring it on.  We’re going to give it everything we got.”

     

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  • Apraxia? How does that affect her vision and hearing?

    So today I took Ashlynn to her 5 year checkup at the doctor’s office.  Her pediatrician is one I met at a pediatrician’s office, but who decided to go work at a family medicine facility.  I love the pediatrician, but having her housed in a general practice creates some challenges….such as today.

    The regular physician assistant was out on vacation, so  another one was there to fill in.  Though she was friendly and seemed good with kids, she really had no clue.

    This was the first year they did a vision and hearing screening on Ashlynn.  I didn’t know what they were doing until she asked,

    “Is she better with shapes or letters?”

    Huh?  Oh.  I realized then she was talking about the vision board.  Oh Lord help me, “The shapes I guess.”

    Ashlynn knows her shapes, and knows many of her letters, but as I’ve written about before, word recall really gets in her way.  I’ve had to tell professional after professional, “You need to have her point for it to be a better indicator of what she really knows.”  Today though I thought screw it.  Whatever.  Let’s just see what happens.

    She takes her out into the hallway and has Ashlynn stand back at a distance.  She points to a star.  “What’s this?”

    Ashlynn, “A rectangle.”

    Me (talking silently to myself): Oh boy, I can see how this is going to go.

    And it went.  She missed every single shape.  When the P.A asked her simple yes/no questions, “Is this a star?” she decided to answer, “no.” For EVERYTHING.

    “Any concerns with her vision?”

    Me:  “No.  She has apraxia.  When she gets put on the spot she has severe word finding issues and just gives you an answer trying to please you.”

    P.A. looks at me skeptically.

    Sigh.  I hate apraxia. This girl can spot a spider on the wall an entire room away, notice her daddy’s new haircut within seconds, or when decorations in the house change, within minutes.  No…I have zero concerns about her vision.

    Back in the room, we wait for the hearing test.  She comes back with a hand held device.

    P.A. “Now raise your hand when you hear the beep.”

    I mean really?  I wanted to start laughing.  My daughter has global motor planning issues!  I should have laughed, because as the saying goes, if you don’t laugh, you’ll cry.

    P.A. “Do you hear that?”

    Ashlynn: “No”

    P.A. turning up volume.  Ashlynn’s eyes dance in recognition. “Did you hear that sweetie?”

    Ashlynn: “No”

    My mind starts to wander.   I have absolutely NO concerns at this point in time with vision and hearing.  She’s passed all of her school screenings and this girl can be distracted by the tiniest noise.  Just ask all of her teachers, including in swimming.  This girl can hear. However, here I am watching this and I wonder, how many more professionals will underestimate her?  This P.A. was ready to pass on a referral for hearing and vision.  It’s not fair.  This is why I don’t want a cognitive test in the spring.  This is why……

    P.A. “Ma’am?”

    Okay, reel yourself in Laura.

    The rest of the visit went great.  Her pediatrician praised her speech and was genuinely impressed.  She laughed when I told her about the screening, and said if I didn’t have concerns she doesn’t either. That’s why I love this woman.  She has a son with autism, and she knows, just like I know, a mother is your best reporter.  She is the expert on her child.  She respects my decisions even if she doesn’t agree with me, and that is the kind of person I need helping me and my child.

     

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  • Wait…is she the ….R word?

    Wait…is she the ….R word?

    Oh apraxia is a sneaky devil.  For so long I prayed to just hear her sweet voice say what she wanted to say.  At some point she started imitating really well.  She didn’t really call out to me “mama” and she didn’t really offer up “I love you” but she could say it in imitation, and this was good.  This was very good…because NOT hearing those words was devastating.

    I still hear my husband putting her to bed at night.

    Husband: “I love you Ashlynn.”

    Giggles

    Husband: Say, “I…love….you.”

    The progression was slow, but she would do it, in her own way using word approximations.  Never spontaneously though.

    The last two years are a blur of therapy appointments, speech practice, working toward the next goal. Despite what I would see at home, she would never show her skills to others so anytime she did something new at school or in therapy and they were so proud, I was just left giving a small thanks that at least she’s showing what she does at home.

    Family who knew her began understanding her more and more.  However, those who didn’t still questioned what she was saying.  Disappointing to say the least, but the honest feedback was a necessary reality check.  I know what she’s saying 99% of the time, so it sucks when even her school SLP rates her at about a 60%.  Oh well.  I need honesty, and that’s honest.

    On her fifth birthday though, it all started to change.  I posted a video of her, and the feedback was incredible.  Everyone could understand her!!  Other people were validating what I have seen for so long!!

    A progress note from school only lists a few artic errors: inconsistent ‘l’ and ‘l’ blends, a frontal lisp ‘s’ pattern, and occasional errors with multi-syllabic words and consonant clusters.  Of more concern now are expressive language delays including: grammar, sentence formulation, and word finding.

    That’s when it hit me.  Ashlynn is almost “resolved” from CAS.  Her motor plan (I’m tearing up), has caught up.

    What?  Could it be true? Can I actually start to even consider my daughter might be working toward resolved CAS?

    How could that be?  It’s only been two years, but then I remember the struggle has been so much longer.  Is this really the girl who could only say “hi” and “a dah” for everything?  The girl who said “nah” for “bus” and “dada” for “iPad?”

    I read something once that said,

    The days are long but the years are short.

    Yes.  Yes.  Perhaps this is true.  At some point I stopped praying my nightly prayer that she would overcome apraxia.  When did that happen??

    I’m always looking toward the next problem.  The next goal.  She has an expressive language disorder now, and the future for a reading disability is still unknown.

    Maybe I need to stop for a minute.  Smell the roses Laura.  There was a time you yearned to hear that sweet voice.  That very voice today that told you, “I like you mama.  I like you.  I like daddy and I like Jace.  You’re my family.”

    What I would have traded or given to her those words two years ago.

    So yes, I’m going to pause.  I’m going to freeze time.  I’m going to think, if only for a moment, how sweet it is to hear my daughter’s voice.  A voice that is her own and able to express her own thoughts.

    I’m going to reflect on the fact, that in just two short years, I met the head of CASANA and went on to now have advanced training and expertise in CAS.  I literally have national apraxia experts a keystroke away via email.

    Say what?  How did that happen?  How did any of this happen?

    I just asked to join the facebook group for resolved apraxia but with new issues.  Yes.  That’s us.  We now fit into that category. My daughter talks so much I now know she needs help with expressive language.  How amazing is that?

    Even though I was late to the game in my opinion because I so wanted to believe Ashlynn was just a late talker, none of this would have been possible without early intervention…..wait…let me clarify…appropriate early intervention.

    For reasons I will probably address later, I’m so, so, so grateful that Ashlynn’s initial evaluating SLP (in the schools) told me it was CAS.  I knew then I had to get her private services.  I knew then I had to research this disorder.  I knew then our life would never be the same.

    I’d seen CAS before.  I’m an elementary SLP, and in my 10 years of experience, two kids walked through my door in Kindergarten nonverbal.

    That would have been Ashlynn had not appropriate therapy been initiated.  That meant that as an SLP, even I had to pay out of pocket.  $365 – $425 a month.  Yes.  Ouch.  Therapy is expensive, but it’s worth it.  I just had a baby in that time too and was on maternity leave.  We didn’t have any extra money.  You make sacrifices.  It’s necessary.

    I knew I didn’t want Ashlynn walking into a Kindergarten classroom nonverbal, so my husband and bit the bullet and went broke funding her therapy.

    It doesn’t matter now.  It was all worth it.  I’m so proud of her.