SLP Mommy of Apraxia

Category: special needs parenting

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
When you can talk but have no words

If you are familiar at all with apraxia of speech, then this meme makes perfect sense to you. Most kids with apraxia, especially in the early stages cannot communicate what they are thinking because they cannot talk or make the sounds make sense.

(Not) fun fact: Some kids (I don’t know the percentage offhand), will also have an additional language processing disorder with the apraxia. This adds another layer of complexity and makes it more difficult for kids to express themselves with language even if they can actually articulate all the sounds correctly.

Such is the case with Ashlynn. Now, to be clear, Ashlynn can talk my ear off. She talks so much sometimes I have to tell her to stop talking, like when she has food in her mouth or when we are brushing her teeth! She speaks in sentences, has long sentences, has question forms, and is gaining new vocabulary words daily.

The other day, she comes home with this paper:

Seems normal, except, the only thing correct is her name. She has never declared a favorite color, she doesn’t eat meatballs, and I’ve never heard of this alleged “favorite book.”

“Ashlynn,” I asked. “Why did you say your favorite food was meatballs?”

“Ugh my brain!” she said as she slapped her forehead.

“Honey, why would you say meatballs though?”

She points to a cookie tupperware sitting on the counter. Over break we had made Christmas cookies called Pecan Drops that are round little balls. She says, “What are those called?”

“Pecan drops?” I offer.

“Yes! Pecan Drops! Ugh my brain!” she exclaims. Sigh. Poor thing. Can you imagine? What must that be like? She knew EXACTLY what she wanted to say, but couldn’t access the word pecan drop and settled on meatball instead. Someone even wrote it down for her and she just had to go along with it. This is what always amazes me about Ashlynn. She like NEVER gets frustrated. How is that? Wouldn’t that be frustrating? She was just happy she could spit out a word and complete the activity. She didn’t care they didn’t know she was trying to say pecan drops.

I look down the list. What book is this? We’ve never read this book? Is this really your favorite book?

“No,” she laughed.

I looked at my husband and told him maybe one day one of these about me papers will be accurate.

Later that day, I saw a fun game on facebook where parents were asking their kids to answer questions they asked them. It was to show how much your kids pay attention and really know you. Questions were things like, what is my favorite food, what makes me happy, etc.

I asked my four year old and he was funny. I told my husband to do it with Ashlynn and handed him the questions. This girl who talks with her mouth full and while she brushes her teeth was reduced to a pantomiming nervous wreck. I could have cried watching it. She knows all those answers. She pays more attention to us than anyone. She will be the first one to notice a haircut, a new shirt, or change in the decor.

My husband asks the first question:

“What is something I say a lot?”

I KNEW she would get this one. She tells me what he says all the time. She tells me “Daddy says he loves me forever.”

She stood there and looked visibly anxious shuffling her feet from side to side. We gave her processing time, we didn’t rush her, we were patient, we both asked again phrasing it differently, still nothing.

“Ask the next one,” I said sure it would be easier.

“What is something that makes me happy?” Cody questioned. I knew she would have this easy. She waited a time and then just pointed at herself. She didn’t even say her name. It’s true she makes Cody happy, but I couldn’t believe she wasn’t saying the jetski, or his snowboard, or his video games. Hmm.

“What makes me sad?” Cody asked as the next question. She pointed to herself again. My husband gave a half smile. “You don’t make me sad Ashlynn,” he said as I sat there feeling that exact feeling. Sad. This was so sad. Where were her words? When I say and write about crippling word finding, this is what I’m talking about.

He skipped down. Ashlynn has been to his work now twice with him for take your kid to work day. She knows he works on computers. He asked her if she knew what his job was. She sat there and started shuffling her feet again.

He asked the last question, “How much do you love me?” and she put her arms out wide, again with no words. 🙁 🙁 🙁

Sometimes it’s such a cruel, cruel, cruel disorder.

Seriously.

January 8, 2017
The irony of the Chicago Hate Crime

By now, you have probably seen or read about the special needs man who was kidnapped and tortured by 4 other individuals. Some reports say it was racially motivated, yet others said they targeted a person for being special needs.

I made myself watch the video. I got through a fair amount. I saw this man cower in a corner while he was beat, kicked and punched. I saw the fear in his eyes. Oh God his eyes. I saw them bully him into getting up and going to the bathroom and I saw him get on his knees and drink the water out of the toilet while they laughed. That’s when I stopped and turned it off.

Some call it evil.

To me, it was simply the worst of humanity. It was a display of everything bad that humans can be, and what’s worse, they had no ounce of shame. Not one drop of shame as they proudly and mockingly recorded it on video.

I have a special needs child, and I work with special needs children every day and I can resolutely tell you this:

They represent the BEST of humanity, what is GOOD in humanity. Their innocence and joy are a display of everything good that humans can be, which is what makes this hate crime so utterly despicable.

This isn’t the first time this has been on the news. It made me remember a story I heard of a young man who had autism and his peers dumped human urine and feces on his head, also capturing it on video for presumably bragging rights or some sick form of entertainment.

I’m sad. I’m sad and then I get angry, and then I get scared because I’m not sure if Ashlynn would know if she was being bullied yet, and I worry she could fall into some mean trap, and all she’s ever done is “spread her sunshine” as my sister puts it.

I don’t like seeing the worst of humanity. Maybe that’s why I surround myself with people whom I feel are the best. They make me remember the good that’s in people because when you read stories like this you can’t get enough reminders that there IS still good in this world. It’s easy to get cynical.

If you are reading this, I ask you to do one thing, make one promise each day when you wake up that today you will choose to be KIND, and if you have children, you will teach them too to just be KIND.

At the start of each day, I’m going to start asking my kids to do something kind for someone, and then at night I’m going to ask them what they did that day that was kind. #choosekindness and teach your kids to do the same…..because PLEASE remember:

Kindness is an active endeavor, not a passive one.

January 5, 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
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