SLP Mommy of Apraxia

Tag: Childhood Apraxia of Speech

Apraxia would have destroyed me

I often think about what would have happened had it been me who had apraxia, dyspraxia, SPD, dysarthria, and a learning disability when I was young. It’s pointless I know, but I was/am a perfectionist. That’s not a good thing. I learned early I was really good at spelling, reading and writing, but math I had to work for. I won a math award in 3rd grade and I looked at the teacher, Mrs. Plummer, like she was crazy.

“I’m not good at math. Give this to Keith or Jimmy.” She maintained I was good at math, but I didn’t believe her and I never cared about that award. I knew what I was good at, and it wasn’t something I had to work that hard to do well.

I think about that because Ashlynn has to work at everything to do well. There’s not like one thing that comes naturally to her….well actually social skills do, but she’s behind in that too only because of her other issues. I had to work at math so it made me mad and I didn’t want to try, despite the fact I could do well.

Her disability would have destroyed me.

She has the best of my husband’s personality THANK GOD. She doesn’t get embarrassed, she attacks everything, she’ll try anything, and she’ll never give up until she conquers it. That’s a page straight up out of her daddy’s book. She’s in a first grade performance Tuesday, and I was watching the practice with the art teacher. I said the songs were hard for a kid with a speech problem (bear necessities, supercalifragilisticexpialidocious) and the art teacher smiled and said she loves Ashlynn because she just goes for it. I smiled. It’s true…she does. She always has. I can still cry thinking about her preschool observation where she couldn’t jump on the trampoline so she smiled and marched instead. All the kids were encouraging her to jump like them….

and she couldn’t bear walk so she hung across a teacher’s arm upside down to at least get a feel for the movement….still smiling.

When she rode her tricycle and couldn’t pedal she never stopped trying……and not only trying, but smiling. Oh, and guess what. She learned all these skills eventually, on her own time. She walks, she runs, she jumps, she bear walks, she skips! She puts me to shame. She puts that third grade girl who decided math wasn’t her thing to shame.

Well not anymore. I’m not sure anyone becomes a parent to be inspired by their child, but she has inspired me and made me better. There are things I do now I would have NEVER attempted. Every time I’m scared or nervous, I think about Ashlynn. One year on a camping trip everyone was cliff diving. I was terrified as I stood on the cliff, but I thought of Ashylnn and I’m on video jumping and while I’m in the air you can hear me say “for Ashlynn.”

Tonight we were watching “Zootopia” and a song came on “Try Everything.” Ashlynn started clapping and dancing around the kitchen. She always dances like no one is watching. Isn’t that phrase people have to try and follow? Well, Ashlynn just lives it. It’s her essence.

So I started listening to the lyrics and I’ll be damned if this isn’t that girl’s theme song. I downloaded it immediately. (I’m also admittedly a Shakira fan so I was hooked anyway). We put it on outside and her AND Jace were going crazy. It’s a great song.

“I messed up tonight, I lost another fight
I still mess up but I’ll just start again
I keep falling down, I keep on hitting the ground
I always get up now to see what’s next

Birds don’t just fly, they fall down and get up
Nobody learns without getting it wrong

I won’t give up, no I won’t give in
‘Til I reach the end and then I’ll start again
No, I won’t leave, I wanna try everything
I wanna try even though I could fail
I won’t give up, no I won’t give in
‘Til I reach the end and then I’ll start again
No, I won’t leave, I wanna try everything
I wanna try even though I could fail

Look how far you’ve come, you filled your heart with love
Baby, you’ve done enough, take a deep breath
Don’t beat yourself up, don’t need to run so fast
Sometimes we come last, but we did our best”

So many times she has come in last but she gets back up and tries again. As a witness to this strength I have no choice but to do the same. Look how far you’ve come, but don’t keep looking back. Look up and I’ll walk next to you guys through anything and I’ll pick you up when you fall.

March 19, 2017
The Gift, Grandma, and more lessons in emotional intelligence

Ashlynn has always given us “papers” with her scribbles on them. She constantly surrounds herself with papers and pens. As impressed as I am with her always working hard, the paper obsession drives me mad. I have papers all around my house! They are treasures to her though, and you never want to refuse a gift from a child.

Ashlynn has a Great Grandma Green who visits periodically and stays with her Grandma Smith. I remember seeing the wall in the room she was staying papered with Ashlynn’s “cards.”

Ashlynn has always been drawn to Grandma Green when she’s here. It might be because Grandma gives her a ton of 1:1 attention. Here is just a peek of the two of them.

Yesterday, Ashlynn came home with a “gift” in her backpack. She made it at school. It looked official. It was wrapped in construction paper. I was excited to see it. I looked at the paper, and it was addressed to Grandma Green. I’d be lying if I said I wasn’t jealous. I showed my husband when he came home, and I gushed about how sweet and thoughtful she was, and then added, “and I’m sooo jealous!.” He admitted he was too. I couldn’t wait to see what it was, but I knew it would be more fun to wait and see.

I texted her Grandma Smith, who is the daughter of Grandma Green and she replied, “Oh boy, not feeling the love! lol.” “Hey Grandma Green will be excited” and then “Wow, I’ve been replaced.” hahaha. I think her Grandma Smith was just as jealous as we were!

We stopped by her Grandma’s house on the way home from school to give her the present. It was the cutest thing ever! I was even more jealous, but at the same time, proud of the emotional intelligence my daughter exhibits daily.

It reminded me of a special moment more than three years ago now where Ashlynn was still mostly speaking in scripts. I titled it “God bless Grandma Green” and it was a special moment too. Not sure what it is between these two, but it sure is special, so once again, God Bless Grandma Green.

December 17, 2016
Anxiety as a special needs parent feels like…..

Anxiety as a special needs parent of Childhood Apraxia of Speech feels like……

It’s my fault. Endless intrusive thoughts wondering what caused it, and despite coming up empty, still feeling like somehow it must have been something you did.

I’m not doing enough. Despite working tirelessly and endlessly for your child, you will continue to see her struggle, and it feels like you have missed something; and the enormity of the responsibility is crushing.

Doubt, doubt, and more doubt. There is always a decision to make in parenting, and it feels like there are never any easy answers, only tough choices, and you’re never sure you have made the right one.

I’m failing. Thousands of dollars dumped into therapies that help, endless restless nights, tireless fights, but still seeing low scores leaves feelings of failure…and nothing is worse than feeling like you’ve failed your own child.

Getting on and off the bus at the wrong stop over and over. Even after months, sometimes years of therapy, you still feel like there is no end. When one area seems to improve, another area of concern arises.

I’m falling. Out of touch with friends, family, life outside of therapies, and yourself.

Exhaustion. Physically. Mentally. Emotionally.

Never ending worry. Am I doing enough? Will my child make friends? Will he/she be successful? Will people see past their disabilities and see their abilities?

The weight of the world at times. A result of all of the above.

Lonely. Finding support and others who truly understand this journey is difficult. Isolation is real.

Thank you to Kendra Jenkins, an apraxia mom and advocate who commiserated and collaborated with me to write this simple, but hopefully powerful post. There is nothing easy about being a special needs parent, but there is always a silver lining, and the silver lining is finding others who can bring you comfort simply by saying “me too.”

Me and Ashlynn

Kendra and Talan

October 23, 2016
My head gets messed up sometimes

This is what Ashlynn has said to me twice today. It’s rather timely since I just wrote about a post about letting our kids know they have apraxia so they have a name for the problems they experience.

Ashlynn (I thought) has known she has apraxia, but I realized I said it a lot when we were still just trying to get her words out and her sounds right, but maybe I hadn’t said it lately.

This morning she called me Grandma, stopped, and then hit her head and said “ugh. WHY DO I DO THAT??? You’re not Grandma…you’re um………….” I waited patiently. “Mommy. You’re mommy. Ugh. My head gets messed up sometimes,” and she hit her forehead.

I quickly told her “Ashlynn, your head is not messed up. You have apraxia, and that is what makes it hard to get the words out sometimes and also why you may say the wrong word.” My husband quickly followed up with his own words of encouragement.

Two hours later I was working on my computer, and she came over and started talking to me. I was asking her what she wants for her birthday. She told me her standard: cards, papers, pens. She’s always fighting over Jace’s magna tiles, so I asked if she wanted magna tiles. She immediately said yes! Then she said, “I couldn’t think of that word: magna tiles. I said Legos but that’s not right. Ugh. My head gets so messed up sometimes.” I started to say something, and she interrupted and said, “That’s because I have apraxia?” I quickly agreed and told her that’s why she goes to speech therapy. (Except she hasn’t been to private speech lately because of some personal family extenuating circumstances). So, literally two minutes later I look up and see this:

It’s not the best picture, but she has a box of decodable books we keep in the living room open and she is trying to read them. She noticed me looking at her and she asked, “When am I going back to speech therapy mommy?”

Sigh

Apraxia sucks. Ashlynn is amazing and her head is anything but “messed up.” Why does she have to work so damn hard. Why does she have to know she has to work so damn hard. Am I doing enough? Am I saying the right things? I swear being a parent is half doing what you think is right, and half second guessing what you said and did.

It’s such an invisible disability at this point. No one would look at her and think apraxia. No one would look at her and think her “head’s messed up.” Ugh. That kills me. Look at her. She’s looking out our window here taking it all in. She is seeing and looking at WAY more than she says. Maybe one day I will know everything in her head. Maybe.

Sometimes, I feel like I’ve been jipped. Other parents get to hear the thoughts behind this picture. I try to read her eyes and her facial expressions. Oh she talks. That she does and she does it well now. I still don’t know everything though, and she knows it now too…..and I don’t know whether or not to be sad or happy she is empowered to know why talking and getting the words out is hard for her.

Sometimes I wonder if that’s unique to parenting a child with a communication disorder, or a more universal experience as a mother. I think of the ABBA song I love so much:

Do I really see what’s in her mind
Each time I think I’m close to knowing,
she keeps on growing,
slipping through my fingers all the time.

September 12, 2016
Lessons in emotional intelligence..courtesy of a 6 year old with apraxia

Ashlynn’s classroom has a color clip system for behavior. Basically, every child starts the day on pink, which is a neutral color, and during the course of the day, students’ behavior earn them a “clip up” or “clip down” depending on their actions. At the end of the day, they get a star to take home that is the color of where their clip was for that day.

Ashlynn has never had below the neutral pink color. On occasion, she has been coming home with greens and even some purple stars! Yesterday, she had a green star and I asked her why she clipped up today. She answered first that she didn’t know (easy, known, motor plan), but when I pressed more she said for sitting in her seat.

When we were leaving, I was able to ask the teacher, who told us it was because Ashlynn finished a writing assignment and stayed focused even as many others around her were not. I mean, maybe that’s what she meant by “sitting in her seat.” Who knows. Stupid apraxia. I never feel like I get the entire story, and how frustrating for Ashlynn that she knows but can’t convey everything she knows.

I made a joke to the teacher that I told Ashlynn if she clipped up she should know why so it can happen again! I started thinking though, maybe that’s not right. Mother Teresa was canonized this week and there were a lot of memes floating around social media. This one caught my eye and reminded me of Ashlynn.

My God I pray she keeps this mentality. She really does know who she is. She could care less about clipping up. I mean let’s be honest. If you’ve read my blog, you know that girl works harder than anyone else and is always trying to learn to write, to talk, to read, to do jumping jacks….like literally her play is stuff she practices in her various therapies. Basically, Ashlynn earns a clip up everyday. Most people have to learn humility, ESPECIALLY egocentric kids. As I write that, I don’t mean to imply there are *some* egocentric kids. Kids in general ARE egocentric. It’s their nature.

Not Ashlynn though. Nope. Ashlynn was born with humility. Seriously. I can’t tell you how many times she gets told she’s pretty on a daily basis and she always accepts the compliment with a smile and grace. I’ve never heard her once walk around bragging about anything, but conversely, she is not devastated by criticism either. If you don’t believe me, read this incident at the park where one of our worst dreams comes true and she is asked why she “talks like a baby” when she was just learning to talk and use her words and was putting herself out there. She handled it way better than me and I’m the adult.

Anyway, when I first started this blog, one of my most liked posts was called lessons from a tricycle. Really, this blog could be called Lessons from Ashlynn. I always talk about emotional intelligence, and I really wish it was talked about or even acknowledged at IEP meetings because it’s a real thing and people with it make this world a better place. Seriously. I would posit that most people need lessons in emotional intelligence, even adults….including me.

If you follow my fb page, you know that I won this award, a media award from ASHA, which is the governing body over ALL speech pathologists and audiologists nationwide. ASHA is basically our American Academy of Pediatrics. I unabashedly felt the need to publish it on my fb page. I would love to go to the national conference in November, but I probably can’t; but really, if I think about it, it’s just vanity, or lack of humility, that makes me want to be there so bad…..and that’s when I take a lesson from Ashlynn.

She just does her thing whether people notice or not, and I seriously feel like the biggest A-hole for thinking I need to go to some conference to be recognized. Oh Ashlynn. Here we are. You teach me lessons again and again and you are only six. Humility is probably on my top five virtues I admire in people. Honesty and integrity being up there too, humility is admirable to me and Ashlynn has it naturally. Keep it up my young chickadee. I’m so proud of you. I love you, I admire you, and I know you are destined for great things.

September 10, 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