Tag: dysgraphia

  • 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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