Tag: Ashlynn update

  • If we don’t say we’re scared, does it mean we don’t have fears?

    If we don’t say we’re scared, does it mean we don’t have fears?

    Ashlynn almost drowned…twice. Okay, maybe I’m being dramatic, but that’s how a mother feels when a lifeguard has to jump in and save your child.  The first was during her first ever swim lesson and the second was during a random winter session her Grandpa took her to.  Both times she just walked off the toddler platform as though she could swim, and both times a lifeguard had to dive in a save her.  The first time, she seemed to have forgotten the incident just as quickly as it had happened; but the second left fear, only apparent from her refusal to get in or go near the water two months later.

    She never told us she was scared, though we asked and she would nod her head yes. In fact, come to think of it, my now four year old has never told me she was scared.

    I remember parts of being four.  I was afraid of everything.  Currently, not much has changed. I’ve always been afraid of things. I hated the typical things like monsters and ghosts, but clowns and mascots always freaked me out too.  It struck me that though I can tell Ashlynn is afraid now of swimming, she has never told me and that makes me sad.

    We always say we want to know their hopes and dreams, but what about their fears? Fear is a human condition. Facing fears is one thing, but kids need and look to parents for reassurance.  How do you reassure your child though, when you don’t know what they need reassuring on?

    The family took an impromptu, much needed weekend getaway.  After taking Ashlynn to her swim lessons and watching her be afraid to even step in the water, my husband was excited to go to a hotel and practice her swimming.  Ashlynn was doing SO good with swimming last summer, even blowing bubbles and getting her face wet.

    Ashlynn acted excited to go swimming.  Kept talking about the pool and asking if we could go swimming.  However, once there, she wouldn’t come in despite my husband’s gentle prodding with arms outstretched.  If he went to grab her, she’d pull back and start crying.  I got in the pool and tried.  I saw the fear in her eyes.  “Are you scared Ashlynn?”  I asked, and she would cry and say, “yes”.  I’d tell her that I’d catch her, but she’d still cry and shake her head no.  I finally said, “Baby, I won’t let you fall, ok?”  Immediately I saw the fear leave her eyes and she verified, “yes?”  Realizing her fear was that she would fall, I said again and more confidently, “Ashlynn, I will NEVER let you fall” and then I said a quick prayer as fear gripped ME, that in every situation the Lord would guide my hands so that I would indeed never let her fall.

    She extended her arms and swung them around my neck and we entered the pool together. I kept reassuring her that daddy wouldn’t let her fall either and she went on to jump into his arms, do her back floats, and blow her bubbles.

    One day I know she will express her fears, and as her mother, I will always be here to reassure her, protect her, and just love her.  For now though, I’ll continue to do what all mothers who have a child with apraxia do…anticipate their needs, give our best guess at their desires, and express their fears for them until they have a voice to do it all on their own.   

  • Her little heart of gold this Valentine’s Day

    Her little heart of gold this Valentine’s Day

    Went to Ashlynn’s Valentine Party today, and was so encouraged!  The SLP informed me she has moved out of the cube chair and is now sitting up front by the teacher with reminders to sit criss cross applesauce.  Watching her with the other kids warmed my heart, although I could see how her core seemed much weaker than her peers.  Her back was slumped and she kept having to lean back on her hands for support.  Her focus was better though, not great, but better!  I have to hold onto this because other reports were not so positive. If you are interested, you can read about one of my struggles here: She really does have special needs

    Other great news: The SPED teacher informed me she is doing fairly well counting with 1:1 correspondence, and during an activity where the kids had to say a sentence, Ashlynn stood up proudly and said her sentence fairly clearly after the teacher modeled.  The teacher then sang a song twice.  Ashlynn was engaged and smiling.  When the song ended, Ashlynn said loudly, “DO AGAIN!”  The teacher moved on anyway, but it made me smile.  She really seemed like one of the kids today!

    I did start to notice when she lost focus.  She is distracted by people.  She wants to know what’s going on.  She’s making sure everyone is ok.  At one point, a peer was crying and she could not take her eyes off her.  During dancing, that same friend wasn’t dancing and Ashlynn came up to her side and danced beside her.  She would hold her hand out as if to say, “I see you.  You matter.  I don’t want you to be sad.”  During the dancing activity, Ashlynn moved from peer to peer.  Laughing with them, engaging them with her smile, not her words.  She was always usually pretty successful.  A person laughing genuinely and having fun doesn’t leave many sour faces  in their wake.

    Toward the end of the dance, she ended up next to her BFF.  I know it’s her BFF because she talks about this girl all the time, and the girl and her hug when I pick her up from school.  Today though, I got to glimpse into their world.  Ashlynn grabbed her hands so the girl’s attention was on her, and just made silly faces and laughed.  The girl couldn’t help but laugh along with her proclaiming, “oh Ashlynn, you are so silly!”  They then would jump and dance together!  I can’t tell you how happy I am that she has a friend.

    It’s hard to imagine that just a year ago, she wasn’t even talking to her peers in class.  I just can’t believe the difference a year makes.  I wish I could go back and tell that mother that everything really WAS going to be OK.  Next year, she would not only talk to kids, but she would have a best friend.  Next year, she would be participating in class, repeating modeled SENTENCES.  However, the sweetest part is that she is still the same sweet Ashlynn with a heart of gold; and I wish I could tell my old self a year ago.

  • She really does have “special needs.”

    She really does have “special needs.”

    So, I obviously am well aware my daughter has apraxia.  I’m well aware of her challenges, but for some reason, I didn’t want to admit she’s “special needs.”  I don’t know why.  I work with special needs kids all day long.  It’s what I do.  I don’t see them as special needs.  I just see them as maybe learning differently, or needing different supports than other kids to be successful.  I guess that’s why it has taken me until now to admit that yes, my daughter does in fact have special needs.

    When she was first diagnosed I was drowning in a sea of sorrow and desperation.  Sorrow because I knew how much more work it would really take her to talk, and desperation because I so desperately wanted to help her and hear her voice, her thoughts, her say, “I love you.”  After that though, I picked myself up and took her to endless therapy appointments spending thousands of dollars on her therapy and little by little, her speech improved.  I’ve been riding a pretty good high for awhile.  She’s talking at school, she’s speaking in sentences, and for all intents and purposes, she has found her voice! Oh, and now with a neat trick from OT she is putting on her coat BY HERSELF and is able to get her shoes and socks on without help.  I see the light at the end of the tunnel!

    Until about a month ago.  It’s one thing to be told you’re daughter will be sitting in a cube chair and has a weighted lap blanket to help keep her focused.  It’s another to see her with those accommodations in the classroom.  She was happy though and if it was helping her, well ok.  Then at teacher conference, the teacher told me she needed us to work on Ashlynn’s name, or at least get her recognizing the first three letters and being able to put them in order.  Sounds easy right?

    Wrong.

    She doesn’t consistently identify the right letter, even when I only have three in front of her; and I have to keep cueing her to start at the left and put them in order in a linear fashion to the right.  I created a grid with three boxes so she could visually see where the letters fit, and she started to get it a little.  In the bathtub, I would take the foam letters and have her put one on each tile of the wall.  Then the OT started sending home packets.  Ashlynn isn’t crossing midline.  She switches hands instead of reaching across her body, and she needs to cross midline to eventually develop hand dominance, and oh yea, to write!  Hmm…I realized she wasn’t starting with the left box for the first letter of her name because she wasn’t crossing midline.

    I know this doesn’t seem like a big deal, but now I have to work on getting her to cross midline with various activities, and also work on her name.

    Ok, that’s cool.  I got this. I’ll keep cueing her with the letters and I’ll add practicing in the bathtub making sure she crosses midline washing herself, and when I’m working on her brushing her own teeth (which she still can’t do well yet)  I’ll also remind her to cross midline.  When she’s eating dinner, instead of just cueing her EACH time to use her fork (which is hard to use because of her apraxia), I’ll also make sure she is crossing midline instead of switching hands.  That while practicing drinking out of a big girl cup and not managing to spill her drink, plate, or drop her fork.  Oh, and when I read her a book at night, while I’m busy reading and then asking questions and making her answer using complete sentences and correcting her articulation, I’ll make sure she flips the pages by crossing midline with her right hand and turning the page. Phew.  Yes, I can fit this in though.  I got this.

    Then on Monday I get caught by the OT in person.  Ashlynn has very weak upper body strength and she needed me to also do exercises with her to improve it.  I was left with another packet.  My shoulders started feeling a little bit heavier.  It’s okay though, I got this.  No problem.  When I work out, I can just have Ashlynn “work out” with me.

    Wrong.

    She needs max assist to do the exercises. I see the need though as she really is weak and can’t even lay on her tummy for more than 30 seconds without fatiguing. Her upper core just isn’t there.  Hmm, I wonder if that’s why it’s hard for her to ride a tricycle, oh crap, I haven’t practiced pedaling with her in awhile.  What kid can’t ride a bike!  I need to get out there with her.  Oops, I digress.

    Oh no!  I just remembered the teacher sent out a newsletter that the kids will be having show and tell every week and Ashlynn’s turn is tomorrow.  Crap, how is she going to do show and tell?  Yes, she can talk, but on demand she clams up.  Better email the SLP.  Okay, that’s done.  I wrote three questions and practiced them with Ashlynn after dinner.  I sent it with Grandma who drops her off, and then I emailed the SLP who promised to practice with her before it was her turn.  Success!

    The next morning I get her ready for school.  She comes out with her coat on upside down and her shoes on the wrong feet.  Sigh.  I haven’t worked on her jacket or shoes in awhile….
    ….and I finally realize.

    My daughter has special needs.

    5/17/17 Edit – I am editing this to reflect my education around special needs, and though she has special needs, the term that is being universally more accepted now is neuro-divergent.

     

  • Just love

    Just love

    It’s really not ok to develop a severe disliking for a child.  They are, after all, just a child.  However, there is a little girl at Ashlynn’s school who is very hard to like.  She’s rude, rolls her eyes, and bosses Ashlynn around.  She has mocked my son (who’s a baby) when he was talking, refused to say “hello” to Ashlynn even as Ashlynn greets her with a cheerful “hello,” and demanded Ashlynn stop hugging a little boy in her class among other things.  All of this has happened in the first five minutes before school started, so I can’t help what wonder how this girl is to Ashlynn the rest of the day; and my anger stemming from somewhere in the depths of me, begins to rise giving way to some not so nice feelings toward this little girl!

    The other day for the class holiday party, I couldn’t go so it was just my husband and Ashlynn.  Feeling like I was missing out, I text messaged him begging for a picture.  He took the most adorable picture of Ashlynn.  I smiled as I saw it, and then I saw she was sitting next to……that girl.  Why?  “Why is she sitting next to this little girl who has an attitude problem and is ALWAYS rude to her?” I huffed in my mind.

    Well today, as I dropped her off for school, we were once again graced by the little girl’s rudeness.  She refused to say hello, and only spoke to tell Ashlynn to get away from the door, declaring SHE was first.  Ashlynn backed away and the girl with an air of haughtiness gestured, “YOU can get behind me.”

    Okay really??  She’s four!  What the heck!  Ashlynn sweetly nodded her head and answered “yes?”  Of course since she was in fact there first, there wasn’t much I could say, as the rules of preschool are very black and white.  However, the rules of preschool don’t dictate my feelings, which were only growing into more of a cancer now.

    As I left the school, I called my mom asking her how she dealt with these problems?  My kid’s only four and I’m already mad at her “friends” and developing hate for a mere child.  I need to get it together.  My mom had great advice, including “let go and let God.”  She also reminded me that in life we all have to deal with these people at different times, and unfortunately, our kids have to learn that too even though it may hurt us.  She made me feel better, and I thought I had put it to rest.

    I started thinking though. Ashlynn has only love in her heart.  She’s the target, not me; and yet she still tells her hello everyday with a big smile.  She still hugs kids when they want hugs (or maybe even if they don’t), and she still sits with her at a party, possibly because no one else will.  I know it wasn’t because she doesn’t have any friends, because all the teachers assure me frequently how well liked Ashlynn is and how she is friends with everyone.  I realized I needed to take a tip from Ashlynn.  There is no room for hatred in our heart.  Love is not only easier, but it’s kinder and makes us feel better.  This little girl is unhappy, but Ashlynn always has a smile.  She has a smile because she dismisses the eye rolling, the lack of manners or social etiquette, and just wants to love.  If Ashlynn can love so simply, than so can I.

    She’s a real class act that Ashlynn.

  • Christmas 2013 updates

    Christmas 2013 updates

    It’s Christmas 2013, and my daughter is 4years, 2 months.  It was a magical time this year with her talking more and being able to jump.  So much is conveyed through jumping and talking.  We did the Elf on the Shelf this year, and each day she would get out of bed and ask, “where’s elf?”  When she found him, she would point (something that took until she was more than two to do) and jump (another motor milestone that took until 3 to do).  Add the speech, “There he is!!” and her excitement was communicated fully for the first time this Christmas!  As a parent, that is literally all you want to see.  You want to see the excitement in your child, and then their wonder as they play with their new presents. 

    Apraxia affects ALL of that.  If you’re not a parent of a child who has it, you just cannot understand.  She smiles in the pictures (though it has to be genuine because she still has difficulty smiling on command), and she is holding her toys (though a picture doesn’t show how she can’t operate AND steer her car, or pedal her big wheel, or put the baby clothes on her dolls), and she looks completely normal; but if you are there with her, you not only see her struggles, but as a parent, you FEEL them as well.

    This Christmas was a mix of feelings.  At seeing her jump and point, we FEEL her excitement.  At forgetting how to pedal and not being able to ride the big wheel, we FEEL her frustration and disappointment.  At opening baby clothes that she actually asked Santa for (“I want clothes….for my baby…baby clothes”) we FEEL her success at telling Santa for the FIRST time what she wanted and not what someone else had suggested, and when she opened the clothes, we FELT her elation.  As she tried to put it on and finally gave up and had to ask us to “play babies with me” we FELT her resignation to her apraxia. 

    There are not words to convey the roller coaster that is apraxia.  There are no words to convey how you literally feel everything your child feels; which is why every parent says they would wish hard things on them if only they’re child didn’t have to experience it. 

    However, this is not a story of sadness or defeat.  This is an update of triumphs and successes, and how this year is better than the last.  In years to come, these years will be faded memories as she will have struggled and defeated all of her difficulties. We will literally be the proudest parents when she achieves every success, and we will love her through them all.

  • Ashlynn Trick or Treat

    Ashlynn Trick or Treat

    Ashlynn turned four this Halloween, and it brought another milestone: being able to say “trick or treat” and be understood!  When she was two, she couldn’t even attempt to say it.  At three, she could say “ee o ee” but then clammed up and wouldn’t say it on command.

    At four though, we had success!  She still needed prompting and encouragement, but she was able to say an intelligible “trick or treat” and this was her best Halloween yet.  You can click on the link at http://www.youtube.com/watch?v=l2BsWccC4Nk to hear it.  Definitely one proud momma here 🙂  Happy Halloween!

    https://youtube.com/watch?v=l2BsWccC4Nk%3Fversion%3D3%26autohide%3D1%26showinfo%3D1%26autoplay%3D1%26autohide%3D1%26attribution_tag%3Dtgo3ZEvB8eCF38nnzTbm0g%26feature%3Dshare