SLP Mommy of Apraxia

Category: global apraxia

There is either fear or hope. Pick one

Life would be so much less complicated if we lived on breaks. haha. Yes, that is my opener and I realize it’s not only a statement captain obvious would make, but it’s completely devoid of reality.

Seriously though, breaks are awesome. Family comments how far Ashlynn has come. We are all stress free (well at least from school and work stress). We can spend time as a family doing things together we wouldn’t normally have time to do. We’re not in “go” mode all week trying to get to school, to therapy, get the homework done, and all the other million appointments we have.

I don’t have a daily reminder of how hard things are for Ashlynn, like tonight, doing homework with her again. Don’t get me wrong, she’s improving…so, so SO much. It’s just, when we’re doing homework, I realize we’re improving, but nowhere near the pace the class is going. I feel like Ashlynn is more keenly aware of it too now, or maybe she always has been and now she can just verbalize it. Tonight we did her reading, her math, and then practiced her spelling test. I think she said at LEAST 8 times something like, “it’s just my brain! ugh.”

We are not punitive. We are patient. We tell her EACH time, something to the effect of, “Ashlynn, it’s okay sweetie.” and I might add, “you have apraxia and also have a hard time getting the words out, it’s okay. The more you practice the better you’ll get,” but then she’ll stumble on a word again, or say the wrong number when we are counting by tens and hit her head and again announce “Ohhh my brain!’

Hearing it once is hard. Hearing her say it twice is hard. Hearing her say it repeatedly despite our words of reassurance and patience is excruciating.

Damnit. Damnit. I had to walk away and have my husband help her. This isn’t fair!!!

I got on my phone and checked fb. In the apraxia group a woman posted a picture of her son crying while looking at a reading passage. My heart broke all over again. Stupid apraxia. Stupid apraxia. Ashlynn isn’t crying….yet. Will she be? Will she get to that level of frustration?

I was feeling down again. Two weeks back at school and I feel sad again. All that joy and happiness of the vacation gone.

Then I read this. A blog post by an adult who had grown up having apraxia. She outlines the day she went back to her old reports and progress reports and how she discovered that in early elementary school she spent 80% of her time in special education. She says the reports all started with how teachers would comment she was a hard worker and tried hard. I immediately thought of Ashlynn. Every report says that about her.

She talks about how she just wanted to feel normal. She says you could see her “subtle progress” through the years as she started spending more and more time in general education. By highschool she still had report cards that said she was a hard worker and tried hard, but now she had a GPA of 4.5. She muses that she doesn’t even know when that transition from “special education” to “straight-A honors geek” even happened.

She concluded that apraxia fueled her strong work ethic, and though she is sad she never achieved “normalcy” she decides maybe it was all for the best.

I needed to read that right now. I needed to read that because I needed hope.

You know what drives parents of special needs kids? You may think it is the love for them, and yes of course that is true. However, at the core, even on the darkest days, what drives us to face a new day with strength while we hold their hand is….hope.

Hope is the belief that despite any challenges we may face and how many times life will knock us down, we will wake up tomorrow still standing, still growing, and still achieving. Sometimes hope may be a flicker, and other times a fire, but as long as it is still there, we will continue to rise

again

and again

and again.

Thank you Alyson for sharing your story AND re-igniting HOPE.

January 12, 2017
One kickass family, finding your tribe, and other lessons from Finding Dory

I finally watched “Finding Dory” last night. I had already wanted to see that movie because I’m sorry, Ellen Degeneres is awesome, and her Dory character in Finding Nemo is the best!

However, when the movie came out, my clients started asking me if I had seen it. “No…” was my reply as I sighed in disappointment.

“You HAVE to see it!” was the resounding response. Yeah, yeah, I know. I want to. In good time. I will. One day. Then I started to read about it on the disability pages and websites I’m part of. Finding Dory had struck a cord with a variety of disabilities including: depression, autism, sensory processing disorder…the list goes on. I purposely didn’t read them so the movie wouldn’t be spoiled.

Ashlynn is seven and to this has never been interested or captivated by movies. She completely checks out and gets distracted and then I’m annoyed and movie time is over. Whatever.

Jace is better at watching shows, but he has about a 30 minute attention span for a story. Now he can watch 3 successive 30 minute shows, but watching an entire movie is not really his forte either. I obtained a copy of Finding Dory, and since I’m on break, I was finally able to fire up the DVD player and put in a movie. It was seriously below zero outside and I was excited to get cozy and watch a movie with the kids. Ashlynn was interested for about 3 minutes before she announced she was going downstairs to play with her dad. Jace snuggled with me for about 30 minutes, his max, before dragging out toys and playing with them. So much for that fantasy. Oh well…

I was HOOKED.

If you know me, you know I talk about emotional intelligence. I talk about it so much because I wish it was valued as much as intellectual intelligence. I have met brilliant people who literally cannot function in society or hold a job because they have zero ability to relate to other people. I would argue they have a disability in emotional intelligence, but no one cares about emotional intelligence so those people don’t get the proper help they need either.

This may be me because I think too much, and please don’t quote me because I am only stating an observation, not a research article; but isn’t it curious that many people who are gifted in intellectual intelligence seem to have a deficit in emotional intelligence, and those considered to have an intellectual deficit seem to have a heightened emotional intelligence?

Let me give you an example. I have a young 5th grade friend in the schools who has Down Syndrome. This kid is some sort of angel. I mean, everyone loves him! Even my toughest, most challenging fifth graders will smile and tell me, oh yea…he’s cool. Sure they know he’s different, but he just has this special charisma you can’t NOT love. I mean I know I’m biased, but I LOVE this kid. If I’m having a bad day, or even if I’m not, this kid makes it instantly better with his smile, his incredible memory for names despite his memory difficulties for other tasks, and his social competence.

I was talking to the main school SLP before break, and she was telling me a friend we have with autism in the 1st grade started school and his mom was terrified no one would like him. One day when she was picking him up, this fifth grade friend was passing by, and stopped and asked if this woman was the 1st grade friend’s mom. She replied yes and he smiled his big perfect smile and announced how happy he was to have this boy at his school, and he said the boy’s name. When he walked away, the mom was crying because she was so happy that someone had noticed her son and not shunned him, and someone had actually even known him by name.

THAT’S emotional intelligence. To have THAT effect on a mother of a special needs child takes an incredible person, and that person is my 5th grade friend who just happens to have Down Syndrome.

Oh but I digress. Back to Dory.

Where do I even start with this movie?? I guess since I’m on the topic, let’s start with emotional intelligence.

Dory suffers from short term memory loss. Consequently, she is not the person, ahem fish, who is good at math, reading, writing, or following directions.

She WAS, however, the fish to whom young Nemo looked up to the most. He felt loved by her. At the end of the day, do you want to be with someone who is smart, or who makes you feel loved? I’m pretty sure most people would say the latter.

Let’s go to her parents. She does finally find them, and as she gets closer to home, she starts remembering more and more. Maya Angelou said, “people will forget what you said, people will forget what you did, but they will never forget the way you made them feel.”

Dory started to feel loved again, and through this she started to remember more and more. She starts to remember the encouragement of her parents,

“It means you can do whatever you put your mind to.”

“When life gets you down…just keep swimming.”

I smiled watching those moments and thought of a phrase someone told me once when talking about prognostic indicators, “Don’t underestimate the power of one kick ass family.” Dory found her way back IN SPITE of her disability because of her belief in herself that was fostered and ingrained by her family.

Finally, the parents. Watching the opening scenes and seeing their realization as to the extent of her disability, but then the resolve to put things in place to help her overcome it speaks to EVERY family I have met. The anxiety that is 10x magnified when you have a child with special needs, the strategies you try and teach to help them compensate, and the undying hope they exhibited at the end of the movie as Dory realized they spent the entire time she was missing laying out shells for her to find her way home……it speaks to the painful yet infinite hope we parents have in our children.

Finally, when Dory was reunited with her biological parents, she was separated from the surrogate family, Marlin and Nemo, she had known now for years. Her parents understandably didn’t want her to risk her life again to get them, but she was not deterred. They were her family too, if not by blood…they had been loyal, they understood her and accepted her, and appreciated her for all of her talents. So much so, that Nemo frequently used the phrase, “What would Dory do?” to problem solve.

So no. Dory went back and rescued Marlin and Nemo, because if you are in the special needs community, you know what it feels like to have found your tribe, even if they aren’t blood; and so you will go back because your tribe understands you, they love you just for who you are, and when you have found your people, it is unacceptable, no UNIMAGINABLE to lose them too.

Finally, at the end, Dory’s memory has improved and she is living with her biological parents and surrogate family..her tribe. She declares she is going to swim to the drop off..a known danger zone if the fish ventures further. Marlin, her surrogate friend freaks out, reigns it in, and then supports her. Fearing for her safety though, he cautiously follows her to make sure nothing happens.

Without looking back she remarks,

“Hello Marlin,”

to which he tries to casually play off. She of course though has a heightened emotional intelligence and tells him, “You look worried.”

He replies something to the effect that he’s pretty sure that’s just his face now and I cracked up! My God that will be Ashlynn some day. She will be spreading her wings, and I will want her to so I will support it, but then I will stalk her and she will know it and tell me I look worried and I will answer her with words that could never be more true,

“It’s fine. It’s how I always look.”

So yeah…..one fish movie left me with all that! If you haven’t seen it, I’ll channel my clients and tell you,

“You HAVE to see that movie!”

December 19, 2016
Feels like we’re falling down the hill again…..

I’ve been sad. Really sad. What’s the point in sugar coating it. It’s interesting, because I didn’t really start blogging until after we were really seeing progress in Ashlynn’s speech. I was able to be upbeat and positive in most of my posts. Sure there were some sad ones, or some angry ones, or some worried ones, but for the most part, I was feeling and had been until recently, pretty optimistic.

I can assure you though, I had very, very, VERY dark and sad days. Days I felt the worry would consume me. Days I felt the guilt and the weight would be too heavy and I would have to admit I didn’t do enough. I didn’t help her enough, and then I would be upset about this potential future outcome and obsess over what I could do more to help her. It’s a vicious cycle I tell you.

Ashlynn has now overcome my greatest fear. She can speak. She will be an intelligible speaker and she will be a verbal communicator. She will probably be slower. She will probably have continued word finding issues, but she will speak. For so long when she wasn’t speaking, I would imagine a hill. At the top the hill, was the trophy, which was intelligible, verbal, communication. As she failed to gain speech, I felt like each day had us slipping further down the hill. I was desperate and worried. How would we ever catch up? At least if we were climbing the hill, I have hope. However, it felt we were grasping yet slipping, and then stumbling even further back….and that feeling friends, is probably one of the worst feelings you can feel as a parent.

I haven’t faced “the hill” in awhile. I mean I have, but at least not in a negative way. We have been steadily climbing the hill. We have been getting closer and closer to the top. In fact, in regard to speech, we reached the top. Language is still an issue, but we are closing in. I see the prize.

Then came school…more specifically, reading. Writing. I found us on a new hill, and on this hill, we are very, very far down. Through Kinder, though I felt we weren’t necessarily closing the gap, it also didn’t feel like we were tumbling backwards either.

Enter 1st grade. Commence tumbling. Commence somersaulting. Down. Down. Down we went. The pace of the classroom curriculum is VERY fast. Too fast. We need about 1000x more repetitions than the typical peer, and honestly, there just isn’t that many hours in a day. I have had to face some very, VERY uncomfortable, okay painful truths, with the main one being this:

Ashlynn is going to have to live with some degree of disability for her entire life.

Call me delusional, but I really thought I could fix this. I really thought I could expert in this and get her all the help…and the RIGHT help she needed and we would overcome this, and by overcome, I mean soon. Like, really soon.

It has been very, very, very painful to realize this isn’t going to happen on my timetable.

My husband has told me before he feels he has a better understanding of Ashlynn’s reality than me. I would scoff. Impossible. He doesn’t know anything. (love you babe). I’m the expert in this. I am NOT in denial. I know the problems and we’re going to attack and beat them.

Well, I think this year has been revealing to me what my husband knew all along. I have been in denial.

I should have known. I mean, afterall, I’m the mom who when filling out a disability state park pass to get a discounted rate, actually felt guilty about it telling myself that even though Ashlynn will grow out of it, if the state approved it I wasn’t cheating.

Hah! I actually felt like I was cheating when filling out a state disability pass and I didn’t think I was in denial?

Can I shake my head anymore?? It’s an approved disability because Ashlynn HAS a disability.

UGH

Do I need to write that in black and white to sink in? It should be obvious by now. I can’t fix this. No matter how many continuing education credits or certifications I get, I can’t fix this. A wise woman who has walked this road before me, had a “hard” conversation with me recently (which I appreciated). However, it went something to the effect of how she wasn’t sure I was truly accepting Ashlynn for who she is, and if I don’t, how that could truly be to her detriment.

Deep breath. Breathe in…..breathe out.

Everything I do is for her benefit. Could I truly be behaving in a manner that was to her detriment?

I have realized that I have. I need to realize there is another hill we are yet again tumbling down, and after we reach the top, there will be yet another hill quite possibly that we will be facing, and at first falling backward on.

As I type that though, I think of life in general. My life without a disability. The hill metaphor is still relevant. Life is not a ride on smooth waters. Life always throws a wave, a dip, or a hill in the way, regardless. Though I would trade places with Ashlynn in a second, perhaps she is learning early what some adults may spend their entire life trying to learn.

A life worth living is about struggles, because without struggles you could never feel triumph.
A life worth living is about sadness, because without sadness, you could never truly feel happiness.
A life worth living is about defeat, because without defeat, you could never truly feel success.

A young man with apraxia in the UK, Mikey from Mikey’s Wish, reminded me recently that learning issues Ashlynn will have to tackle herself, but the greatest gift I can give her is just my support.

It doesn’t seem like enough, but I don’t think I can “fix” her anymore. I can though, hold her hand and squeeze it when she’s sad or when it’s hard. I can’t take away her disability, but I will walk through every fire with her to overcome it.

I still feel like we are tumbling down another hill, and though I can’t promise her I can carry her to the top, I can at least promise I will hold her hand and die trying to get there

.

November 21, 2016
Hello dyspraxia…thanks for making me cry

I’ve been riding a pretty nice high in the post apraxia diagnosis era. Mostly positive and determined, I had taken action and Ashlynn’s speech improved significantly. That is such a celebration, truly. Everyone comments within the family, at work, or at school how her language is exploding and she’s talking so much more!
Yes!
But then…..her dyspraxia started becoming more noticeable and our focus shifted. Dyspraxia affects her ADL’s (Activities of Daily Living) which include not only things like brushing teeth, taking a shower, getting dressed and undressed, toileting skills and using utencils, but also affect writing and gross motor skills. That’s okay. We would tackle that too. Make sure she has school and private therapy and we will beat that too. All in good time dear Watson.
It’s just…..time. There isn’t enough of it.
Every motor act is so laborious. Determined to make sure she can one day attain independence, we have been making her (some days more easily than others) do it all on her own. It is excrutiatingly painful to watch. For example, despite getting dressed every day for at least three years now, Ashlynn still struggles to dress herself. It’s not for lack of trying, okay sometimes, but every step is hard. In those three years, my son, her younger brother, went from being a helpless baby to perfectly independent without any help or cues from us. He has literally zero issues with the motoric aspect of getting dressed and complete a night time routine, start to finish, even putting himself to bed.
Tonight he asked me, “Why can’t Ashlynn do it?”
I wonder in those moments how she takes that. Currently it’s all in stride….but i wonder.

I switched insurances since private out of pocket therapy for EVERYTHING was killing me, so at least with Kaiser, my insurance, she will get some visits paid. I took her in for the OT eval and jokingly told the evaluator I was sure she would qualify. I’m pretty aware of her issues at this point. When she came out, she joked back that “Well, she does DEFINITELY qualify” and went on to tell me how sweet and wonderful she is.

For some reason I instantly felt sad. I don’t know what I was expecting. I know what I would wish.
“No Ms. Smith, she’s a little behind but all within normal limits.”

Why? Why does that go through my head? If I thought she was anywhere close to typical I wouldn’t make drastic life decisions like switching insurances and pulling her out of school for an eval. I don’t know. It’s just sad. Not that she qualifies. She DEFINITELY qualifies…..like even if one were to try and say she was normal…she’s not. That’s how I took it. Is that wrong? I don’t know, probably. I always say though we can’t make ourselves feel any certain way. We feel the way we feel at the time, period, and that’s how I felt. 🙁

The results came this week and she was given a test of visual perception skills that she has been given twice before, once last year, and once a year and a half before, and scored as much as 20 points lower on some subtests. 20 points LOWER?? What is THAT about?

Oh hi there guilt and self-doubt. Shit. We took the summer off of OT. We had some things come up and couldn’t afford therapy, plus we were switching insurances soon anyway. Give her a break…but is that why her scores are low then? Has she regressed? Was she paying attention? I’m failing her. I’m failing her at the one thing she wants to do more than anything now…read and write. The follow up description said children who struggle with this test will struggle with reading and writing. Yep. Definitely my fault. She has regressed on the one thing she practices as much as speech everyday. Writing. I wish I was exaggerating. She steals all my pens and has pads of paper EVERYWHERE. They go to school with her, to bed with her, sheets of paper cover my car, my husband’s truck, she takes them on her backyard swing and they cover the yard, and they are all over my house. How is it she REGRESSED. 🙁 🙁

Then, this weekend we had a birthday celebration for her at my house. Great! I needed an upper! She basically never plays with toys so people bought her clothes and books and cards…which are all things she loves.

My brother and his wife bought her a case of gel pens and my mom stuck in a free pad of paper and some stickers she had received in the mail just to get rid of them along with her gift of lots of clothes.

My niece in Wisconsin Kayla texted and asked me what Ashlynn’s favorite gift was. I looked up to see her case of pens proudly displayed on her kid table in my living room and the free paper sitting next to it coming in a close second to her favorite gift.

For the first time without prompting, her independent scribbles on the paper had actual words: “Mommy” and “Dad.”

As proud as I was, it’s not right. It’s not right her favorite gift is a pen and paper so she can learn to write. It’s not right that she knows she has to work everywhere everyday, and practice 1000x harder. I’m the one crying though, not her. I’m the one that thinks it’s not fair, but to her, this is just her life as she knows it. Ignorance is bliss…isn’t that what they say? Is that a good thing?

Jace will be in Kindergarten next year. He’s crazy smart with no glaring motor issues. Can you believe we have only barely attempted to try and get him to write? I know the reason, and my husband does to but neither of us will say it loud.

Will that kill her to see him write? She’s already watched him whiz past her getting dressed, feeding himself, showering himself, doing whatever it is by himself.

We know Jace will get it. We don’t need him to be a prodigy, but could he be a prodigy if we worked with him more? ahhhh. It’s so much. Where the hell is the parenting manual? I need it! I would actually read it! Instead I feel like I’m never doing enough for either of them. This feeling will pass….I know it will….as I said though, feelings are feelings and they are what they are. This is what they are right now.

It’s dyspraxia awareness week in the UK. That’s because dyspraxia isn’t as well known or researched here in the U.S. I guess what I want to say, is though I am sad, I am strong. I will NEVER stop. I will accept this step back and I will step the freak over it with Ashlynn’s hand in my hand. We’re going to help her. We’re going to meet her where she is at, but we are never EVER going to give up, and I won’t stop because one day, when she is older, I want to look her in the eye and confidently say I did EVERYTHING I could…and mean it.

October 10, 2016
Homework and special needs? Insert silent cursing in my head.

Homework. I’m gonna be honest. When I was a young, enthusiastic SLP, I assigned speech homework all the time. Most of the time, it didn’t come back. I could never understand what the deal was. It’s seriously like 5 minutes of their time. Who doesn’t have 5 minutes?

Man, sometimes I want to go back and smack some sense into that young SLP!

Let’s talk homework. I know most parents dread it. That wasn’t a typo. I just wrote parents. I know this, because I hear it all the time. Now, don’t get me wrong. I’m not going to sit here unfortunately, and tell you homework is not important and our kids shouldn’t have it…I don’t believe that either. BUT……

Now, I want to talk about homework and kids with special challenges. Seriously people, if parents of kids without challenges want to pull their hair out during homework, let me just give you a tiny peak into my life.

I have a kid who actually wants to do homework, like I was. Thank God. Everything I am about to tell you would only be THAT much worse if she didn’t, and from what I hear, most kids DON’T want to do it. It starts with reading, which we are supposed to do for 15 minutes every night. That’s usually doable. I say usually, because in the time I pick her up from school at 3:30, we usually have some sort of extra therapy (Speech or OT) or extra curricular we have her in hoping to catch her up, and they also assign hw. I actually have her in less than many parents I know because their kids are still requiring more than 1x a week therapy, just as an FYI to any professionals reading my blog gaining some perspective. Anyway…I like reading because at least it’s a time limit and not an amount. Actually, that would be nice if instead of an amount, we were given a time. Let me give you an example with a recent math worksheet.

This was a packet. A PACKET people. There was a pie graph with nickels and pennies and we were to spin a paperclip with a pencil and then document how many times the paperclip landed on either coin and we were to do ten trials on spinner A and ten trials on spinner B. Then on the back we were to compare. It was a great activity. I looked at it and realistically thought we could complete it in a week. It was due the next day.

Sigh

Okay, to start, spinning a paperclip with a pencil tip is hard for even ME and I’m an adult without motor planning issues. You can only begin to imagine how much time was actually spent on just trying to keep the pencil tip in the paperclip and spinning a spin that actually stayed on the graphic. Basically, the task turned into learning how to spin a paperclip with a pencil…I’m serious. Now that I have some foresight, I think maybe it would have been best if I were to spin and then she were to write down the results, because writing down the results also doesn’t just teach her math, it’s another OT (occupational therapy) lesson. She would mark in the wrong column and then have to erase, which sounds fast…but with motor planning, NOTHING is fast. I was so frustrated after 5 trials of just the first spinner (and mind you we had 15 more to go) that I stopped there…..because after that we had to shade in a bar graph. Ahh yes…”shading” in with a kid who has motor planning. Do you know the serenity prayer? I was repeating it in my head over and over and over again. We are now at least 30 minutes into math hw and this is after the 15 minutes we did of reading. Nevermind I have my own work to do from my job that I still have to get done before the next day. I have to do her hw with her. Sigh. Okay….graph is done. Awesome…turn the page…..and….math calculations.

Silent cursing in my head. Big deep breath. Stay calm.

“Okay honey, so let’s count how many more times we landed on the nickles and write that number.” Oh yeah…writing…that’s a motor plan too. She forgets how to write letters and instead of “calculating” the task in now a handwriting and number formation lesson. FML The ONE silver lining is Ashlynn is not frustrated at all. Thank goodness. I don’t know how she has this amazing tenacity, but she does, and I am so thankful, because this night looks much more difficult in many houses with kids who do get frustrated and want to give up and fight them.

We finished all the math in about 50 minutes only completing 1/3 of what was required. Is this what a first grader is supposed to be doing? Because I also put her to bed early because she’s six, so between 3:30 and 7:30 we have four hours to drive to a therapy, attend a 45 minute therapy, fix dinner, eat dinner, and then do homework and then go to bed. I get why parents don’t do it. I do it because I’m a type A personality and if something is required I can’t let it go.

The school recognizes that kids should not have hw all the time, so they only assign hw M-Th. I guess they think this is helpful. It’s not. I asked last year AND this year for them to send the hw over the weekend…when we have lots of time…and we will complete ALL of it. It hasn’t happened yet, but seriously, if the goal is the amount, than I need more time, which includes the weekend. My kid has special needs. Other kids aren’t challenged by the motoric acts and attention issues that we have. There is no other option than more time for my kid. It’s the way it is. Either that, or we set a time limit, like reading. Work on reading for this amount of time. Okay, we can do that.

I go back to current IEP meetings I am in now with a MUCH different perspective than my young, pre-kid, SLP self. Speech homework?? Speech homework?? Ahahahahahaha. Yeah, no wonder parents wanted to laugh. I just had no idea. I think back to kids I had with ADHD. Ashlynn has it minus the hyperactivity, and if anyone or anything enters the hw room she looks up and is gone. It takes time to regain her attention, find the problem she was working on, and then continue our work. When this happens at least 10 times during the hw assignment, we are talking a sizable chunk of time!

You know what really sucks about homework though? It’s that OUR kids, MY KID, need it the most, and they take the LONGEST to do the amount the average kid is given; and because they need more repetition, they get MORE than the average kid.

Think about that! Isn’t that jacked up??

So, for a kid like Ashlynn, an average hw load already takes her at least double what it takes a typical peer, and because she needs more help, she also GETS double the work.

My apraxia sister with a 2nd grader in Oklahoma wrote it best the other night in a text to me saying simply,

“Global Apraxia SUCKS!!!”

Yep. That sums it up.

October 2, 2016
To tell or not to tell……..your child they have apraxia of speech?

I see a question that gets asked a lot. In fact, I asked it myself. It usually goes something along the lines of,

“Did you tell your child they had apraxia? If you did, how did you say it? What did you say?”

I remember thinking when I first saw this question that I wouldn’t tell Ashlynn until way later….and then…maybe if she still seemed apraxic, I would tell her. I didn’t want her to feel different. I wanted her to know I believed in her and I wanted her to believe in herself. I wanted her to know that she can do anything anyone else can do.

Yep. That was my stance…..

Until,

Sharon Gretz, the executive director of CASANA answered someone’s question. She made so much sense, I couldn’t help but immediately question my own decision. She told this parent that it’s important kids know from an early age what their problem is, so they have a name for the difficulties they are facing. Providing a name empowers the child because they realize their struggles are due to something that is real. In this way, they have a name for the struggles they are experiencing, and don’t develop their own schemas about it. These schemas anyway, are usually negative and may include: I’m stupid, I’m dumb, or, I’m different.

Aren’t we as parents the first to tell anyone who questions our child’s abilities that they are smart?? Aren’t we the first people to defend their honor? What do we use an excuse? Well, we explain apraxia don’t we? We defend our children’s honor by labeling them. Right?

So, why wouldn’t you offer that SAME defense to your child? You’re the first one to say your child is smart. I’m the FIRST one to say my child is capable. If I, if you, truly believe this; can you really think your child doesn’t know they are different? Do you really think that, or are you just hoping they don’t know?

I have a feeling it’s the latter. I have this feeling, because I have hoped the same thing.

Truth is, Ashlynn has always known. I remember when she had JUST turned three and was put in preschool as a nonverbal child, the teachers reported she would just laugh when they asked her to do something. I could see it in their eyes:

Low cognition
Poor comprehension

However, I knew….I KNEW as her mother, that Ashlynn laughed as a coping mechanism because she couldn’t do what was being asked. It didn’t matter if it was speech or otherwise. Ashlynn has GLOBAL APRAXIA, meaning overall motor planning difficulties. It didn’t matter what they asked her to do, she couldn’t do it…so…she laughed.

Every heard of emotional intelligence? My daughter has it in spades. If you haven’t, it’s because we live in a society who only values academic intelligence, completely ignoring the fact that a genius who can’t relate to people or get along with people can’t be successful in life.

No.

I’m ever so thankful I read that post and the response from Sharon. Before I was even sure my daughter knew what I was saying, I told her she had apraxia. Whenever she even remotely paused and looked upset, I would tell her “oh dangit. That darn apraxia!”

If you have read my blog for awhile, I talk about apraxia being the new stuttering. Back in the day, no one wanted to tell a child they stuttered. Surely they didn’t notice, so you didn’t want to draw attention to it. Years of research later, low and behold children who stuttered DID know they were different, and instead of understanding their disability, they developed shame.

Shame is a bitch. Shame develops when you feel as though you have done something wrong. If we don’t talk to our kids about apraxia, we risk them feeling ashamed of it. Apraxia is NOTHING to be ashamed of.

That leads me to my final thought.

The walks for apraxia taking place around the country.

I recently learned so many people think the walk is about awareness.

I mean, I guess. I can see that. Certainly a part of the walks is about awareness. Publicity leading up to the walk and various news stories all bring awareness and awareness is very good.

However, it may surprise you to know, especially from me, that the walk itself has very, very little to do with awareness in my eyes.

The walk, in particular, the medal ceremony, has EVERYTHING to do with honoring our children.

No shame.

We HONOR them for their struggle. We HONOR them for differences. We HONOR them for their perseverance and hard work..

We HONOR them. We RECOGNIZE them. Their family and friends HONOR them. Their therapists HONOR them. We all honor them, because despite the odds, they persist and achieve. We recognize their achievement in spite of apraxia, and they can feel pride, not shame.

Even if your child is considered “resolved,” I would urge you to rethink your stance on not telling them. People………..they KNOW. They may not know what apraxia means, but they know they aren’t like other kids. They know they are different.

On final thought. A label should never be used an excuse and trust me, our sweet babes are smart enough to use a label to their advantage. I’ve definitely heard a story or two about, “oh I can’t do that because I have _____.”

On the contrary, it’s a teachable moment to say, “It makes it more difficult for you, but YOU are capable and I believe in you.”

If you don’t believe me, ask my daughter some day! We are obviously an atypical family because I specialize in apraxia so I see kids all day with apraxia and of course Ashlynn has it; however, my youngest son asked me why he DIDN’T have apraxia. lol.

No shame in this house. Only knowledge…and knowledge is power.

Jumping her heart out at a fundraiser for the Apraxia Walk

August 27, 2016