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SLP Mommy of Apraxia: January 2014

Sunday, January 26, 2014

Did I cause her apraxia?

It starts with a question: 
Did I cause her apraxia?  I know I'm not the only mom to wonder this, or worse, believe this.  This is where the guilt sets in.  It set in early and would tap on my shoulder in the shower, at lunch, or when I was trying to go to bed.

Even though I'm an SLP, and I tell parents all the time that the speech delays are not their fault, I still felt like somehow I must have done something wrong.  Maybe my C-Section had something to do with it.  Could it have been the petocin, the pain meds, the stress? Maybe if I had only taken my pre-natal vitamins more strictly and just dealt with the fact they made me sick.  Then, after she was born, maybe I didn't talk to her enough.  Maybe I didn't give her enough attention.  Maybe it's because I went back to work and she was sad her mom wasn't there full time.  Maybe it's because I talked to her TOO much.  I was trying TOO hard to make her talk she never had a chance to just be herself.

Ugh, enough already!  It's exhausting to feel this way.  It's exhausting to go through every scenario in my mind wondering if there was something else I could have done, not done, tried to do.  She has apraxia and the truth is, there is nothing I could have done to prevent it.

I know it's not my fault, but....is it really not my fault?
Now, I just have to believe this. That's the hard part. I'm not alone because I read stories almost daily on my support group page of parents wondering if it was the c-section, should they have breastfed or breastfed longer?  Was it the food they ate, a cold they got, a toxin they were exposed to......the list goes on.  Theories with no basis that mothers will beat themselves up over.  Well, I want to tell you to stop it.  I know it's hard, I know it's still in the back of your mind, but if our thoughts become our truths, then this thought process is a cancer.   Further more, it doesn't matter.  It doesn't change the fact your child or my child has it.  What does matter are our actions right now to make it better.  To fight for our child and help them through it.

How I actually banished the guilt
I have finally shed my guilt over it, and the credit is due to my son.  My typically developing son who is so eager to be older and to grow up.  He learns things and picks up things without me literally doing anything.  He is 18 months and already sings his ABC''s.  I have NEVER worked on this song with him. That's how easy talking is supposed to be.  Despite my daily dose of the alphabet song with Ashlynn well into her third year, she only could sing it at 3 1/2.  My son, on the other hand, picked up the iPad, listened to it on repeat for a couple days, and started singing it.  I remember watching a video on facebook of a friend's  2 year old when Ashlynn was the same age and crying thinking what a bad mom I was.  This little girl was younger than Ashlynn, singing her ABC's and I'm supposed to be an SLP no less and still my little girl wasn't singing it.

Last night we were eating noodles for dinner.  My four year old with apraxia kept resorting to using her fingers, and I kept prompting her helping her to use her fork.  It's hard to pick up spaghetti noodles that need to be scooped rather than stabbed.  I briefly looked back at my son in his highchair, and he was not only scooping up the noodles like a pro, but he was stabilizing the bowl with his other hand to steady it.  I looked at this situation in awe.  Again, I have maybe once showed my son how to scoop with a fork instead of stab, and here he was, doing it as well, if not better, than Ashlynn.  That's how easy it's supposed to be.  He picked that up without any special help from me, and even after years of practice with Ashlynn, she still has a hard time.

I start to realize even more, her progress or lack of progress or slow progress is apraxia's fault.  It's not my fault or her fault.  It's not anyone's fault. 

This morning I was asking my kids what they wanted for breakfast.  I threw out two ideas to my son and he shook his head and said 'no.'  I have never taught him the word no.  I never had to teach him that instead of stomping his feet and throwing a tantrum, he could simply say, 'no.'  He just does it.  There was a time that the child throwing tantrums instead of saying 'no' was my daughter at 2 1/2.  Myself, my husband, and my mother-in-law literally had to tell her for months to stop and say 'no.'  Yes, that happened.  I actually had to teach a child to say NO.  Chances are if you have a child with apraxia, you have been there done that. 

If you are a mother and are looking for something to fault, then I suggest you personify apraxia and fault the disorder.  It's not your fault.  You hear me?? It's NOT your fault.  Even if you have two kids with it, it's still not your fault.  Stop the guilt.  Stop the obsession with trying to figure out why your child has it.  It doesn't matter anyway.

I say this to you again as a parent AND an SLP; talking should be easy.  Though it is a highly complex skill that parents only fully realize when they see their child struggle, a child should talk regardless of what you did or didn't do.

I just want to say one more thing.  I think parents get the message that it's their fault when the SLP (myself included) gives them suggestions for home.  These suggestions might be to make their child grunt or make some type of sound or word approximation everytime they want something.  Don't let them get away with saying a sound wrong that you have heard them say correctly in therapy.  Don't let them point and give them what they want when they can say a word for it etc. etc.

I want to tell you we say these things not to fault you.  Parents of typically developing children didn't make their child talk.  Their child just naturally did so.  Don't listen to your family member, or well meaning friend or whomever tell you it is your fault because you never made them talk.  Children don't have to be made to talk.  I really  BELIEVE this now with my son.  I have never made him talk.  He talks so much I can't make him stop talking. In fact, the one time I did try to teach him a word I was trying to get him to say "Jake" when requesting the show "Jake and the Neverland Pirates," since Jake would be easier to say.  Well guess what?   He didn't say Jake, he said pirates instead and has continued to do so.  So there you go.  I am the same mom, the same SLP I was with him as I was with Ashlynn, and I am here to tell you I tried my DANGDEST to get her to talk.  I did everything I knew how to do as a professional.  Guess what though?  She has APRAXIA.

So for now, I've channeled all that guilt and blamed it on Apraxia.  I wish you the same!

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Friday, January 17, 2014

January book of the month: The Jacket I Wear in the Snow

Winter is in full swing, and there is no shortage of books that talk about winter, snow, and winter clothing vocabulary. Also, the preschool in my district has winter clothing vocabulary on as part of the curriculum, so it's perfect!

The book is a repetitive, rebus style book that is great for practicing vocabulary, early reading skills, sequencing, and as always speech!

I started with some cutouts from the story I found here:
Winter clothes

Then I printed them out, laminated them, and put velcro on so that the kids could dress the boy.  I used a printout doll from the website you can find here: Paper dolls

This was the final result and it's just so darn cute! All my kids from preschool up to even 4th grade love dressing up the boy.  For my speech kids, I strategically pick a clothing item for a sound they are working on.  There are a lot of good options including 's' blend words that seem to be a constant therapy target for at least one group a year.  For a child with apraxia, there are some good basic CVC words you can use (i.e. cap, boot, sock,), or in my daughter's case since her speech is improving so much, I gave her most of the cards and she had to practice recall while I read the book.  The use of the cutouts provide a visual and tactile aid to help kids learn and recall the vocabulary, so you will see I try to make cutouts to go with books I have whenever I can get my hands on them.  Unfortunately, I'm not very talented in the drawing department, so I have to rely on other sources as you see I did here!

 For my older kids, we did silly things to practice following directions with spatial concepts: on top, under, over, etc to work on receptive language, and then they had to do a retell.  Again, the visuals really help in being able to sequence and retell the story for those kiddos who have weaknesses with language processing.

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Wednesday, January 15, 2014

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?


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.


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.

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Monday, January 13, 2014

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.

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