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.
If you follow my facebook page, you probably already saw our HUGE news! Ashlynn came home from school this week with a note and award that said she had successfully verbally named EVERY single letter AND letter sound.
It’s nothing short of amazing. Ashlynn has been working soooo hard and for YEARS. YEARS! She deserves it soo much. We bought ice cream for her and let her eat it straight out of the carton right before bed!
Right after this picture was taken, my husband walked into the kitchen and told her “Ashlynn, I’m sooo proud of you for working so hard.”
And then….something surreal happened. Maybe it won’t feel surreal to you, but let me stress…it was.
Cody left the room and she looked up at me….with this same smile…the smile you see here….and she said,
“And Mommy, I’m so proud of you for working with your kids and helping them talk.”
I included the above dead space on purpose, because dead space is what happened. Time stopped. I looked at her looking back at me with what I can only imagine is the most shocked look on my face. Tears actually immediately welled in my eyes. Where did THAT come from??
I am a private person. I’m not saying we shouldn’t cry in front of others, but it’s just not my way. I just prefer to do it behind closed doors….but right then…in that moment…that moment all about her…..it felt like someone was speaking through her and it took a moment to collect myself.
I told her thank you but this moment was about her. She tilted her head back in glee and then pointed at her brain and said,
“Mom! My brain is not messing up my letters anymore!”
…….and she innocently took another bite of ice cream.
We always hear about mama bears. Okay, maybe it’s just me, but I guess I am one. Daddy bears don’t have quite a good a reputation. Daddy wolves though. Watch out. Read about them. You do NOT want to cross a daddy wolf.
My dad is a daddy wolf. I found a definition online that read,
“Male wolves are attentive, monogamous and fiercely protective dads that live with their she-wolves for life. A wolf pack is essentially a classic nuclear family consisting of a mom, dad and kids.”
If I had written that definition, I would extend the kids to “grandkids” as well.
That’s because my dad is a daddy wolf. My dad loves being a grandpa, and he likes being called grandpa. Grandpa is a name of respect…just like dad. A child says “dad” out of respect, and similarly says “grandpa” for the same reason.
He had 5 grandchildren before Ashlynn. They ALL respectfully refer to him as “Grandpa Baskall.” It is a title he has certainly earned.
Then came Ashlynn. Then came apraxia. Yeah, Grandpa is going to be pronounced “papa” and that’s just the way it is. I saw my dad soften in these years. We always think about the pain parents feel that their child cannot say their name…….but when do we talk about the grandparents? My dad, though words were not spoken, I think had also yearned to hear his grandchild say “Grandpa.”
She clearly loved him. She gravitated toward him as a nonverbal two year old. He would play with her and make her laugh. He would practice writing with her, playing ball, and pulling toy boats in the grass outside. She giggled in his presence. She clearly loved him…..but she couldn’t even say his name “grandpa” much less “I love you.”
Ashlynn dancing on my dad’s feet at his 45th wedding anniversary.
One day….when she was three….she was able to say the words “papa.” I can’t recall the exact moment in time, but I can recall that my dad never even blinked from that day forward to being called “papa.”
My dad working on “ball skills” with my daughter who has dyspraxia
One day, on our way to my parent’s house, Ashlynn told me she was happy for the first time. She was 4 1/2. It was so monumental, I wrote an entire post about it. I think it’s a great read, and if you want to read about it, it was entitled: Ashlynn Happy….Papa’s House.
She is now 7. She is verbal, intelligible, and says so many more things now. She would be able to say “Grandpa Baskall” now, but he is not her Grandpa Baskall, he is and always has been…her Papa. The same is true on my husband’s side. Where they both went by Grandpa, they both now are Papa…because of Ashlynn.
Though Ashlynn can speak, she is still a girl of few words. If you know her, you know there is way more in her head than what we hear out of her mouth. Thank you to her additional language processing disorder that has been heaped on top of the apraxia.
Anyway, on Thanksgiving, my dad, my daddy wolf, was talking to Ashlynn before he turned to me and resolutely commented on how he couldn’t wait for the day she would “break out.” The day when we would truly hear all the thoughts in her head. He laughed that we would all have to “watch out” because boy would she have a lot to say.
I could only smile wistfully. I have to be honest and say I’m not sure that will ever be her reality. As I mentioned, Ashlynn’s language processing is also impacted….aside from apraxia. I hoped my dad was right. As I looked at him, at his resolve, and his absolute certainty Ashlynn would one day break out, I started to remember how he believed in me that same way. That daddy wolf way. That papa wolf way. My dad ALWAYS believed in me. It wasn’t a belief born out of encouragement either. It’s not like he was always telling me I could be anything I wanted. On the contrary, he’s very practical and encouraged me to do practical things like don’t take out student loans and have a plan B (some of which I listened to, a lot of which I didn’t…. love ya dad!)
No, it was deeper than that. It was a visceral belief that I felt…..and though I am still scared for Ashlynn, I took comfort in that moment that the same daddy wolf who believed in me, had that same firm belief and resolve in MY child.
It gave me hope again, and boy, aren’t we always looking for renewed hope.
Speaking of hope, today the internet affords us many opportunities that wouldn’t have been possible…one big one being knowing others with the disorder.
In my search for others like Ashlynn, I came across a page called “Mikey’s Wish – Verbal Dyspraxia Awareness.” That is the term for Childhood Apraxia of Speech as we know it here in the U.S. Finding his page, was like finding home. Ashlynn’s disorder is sooooo misunderstood. Many peg her as having a cognitive impairment, and on a test of cognition, I am certain she would perform poorly too. However, motor planning is a bitch. It impacts EVERY area. My daughter’s cognition is in tact. IQ tests will never be able to adequately describe her because inherent in any IQ test is language processing and motor planning.
One of Mikey’s poems
Anyway, back to Mikey. I have been soooo impressed by Mikey’s writing. He writes poems and other genres to spread awareness and to encourage expression and understanding of those who have apraxia.
When I was in AP English, I remember our teacher saying writing should make people “feel.” Good writing touches on “universal experiences” that touch a large portion of the population regardless of culture, background, or creed.
I can tell you, that the few things I’ve read now that are written by people with apraxia “speak to me.” I start to have hope that maybe Ashlynn will have an outlet in writing.
Their writing frequently makes me tear up. Ashlynn may never “break out” as my dad described. Or…one day…maybe she will. We certainly have success stories now in Ronda Rousey and Gage Golightly.
I’ve been enjoying Mikey’s poems so much that recently I asked him if he ever thought of compiling them and selling them. I would love to buy them to have Ashlynn read when she’s older. He said he had not, but it apparently got him thinking. He recently wrote this
I have been reading up about getting poems published and it is very hard to do. Then I got thinking about something that I would have liked to have access to when I was younger. I don’t know if I will be able to do it but I would definitely like to give it a go. I would have really liked to have a book that would either make myself feel better about having verbal dyspraxia or that could be read to (or read by) other children to help them understand a bit about verbal dyspraxia. Aimed at primary age children, so maybe written in rhyme with nice pictures. I would really like to be able to make this a reality. Can you imagine a child who has always struggled with literacy managing to get a book in print. Now that would be a huge achievement. I know I can write it so I will, it’s just getting it noticed by the right people that I might find difficult. But I am used to facing difficulties so hopefully that won’t stop me and if I don’t try I will never know, so watch this space. ?
Well, I for one am watching, and cheering. He’s absolutely right. How amazing would that be that a child who struggled with literacy would get a book in print. It really speaks to his intelligence and how even though he had struggles talking, then reading, then writing, he’s in there and it now comes through IN his writing.
When my dad said he can’t wait until Ashlynn “breaks out” it may never be verbally, but perhaps it will be in a different way. Actually, it could be in a way of which I am rather quite fond of…writing.
This weekend she brought home this. I pulled out the paper, saw the rubric and winced. Like, I seriously physically winced because rubrics lately have been…well…depressing.
I took a deep breath and opened my eyes. Ashlynn rushed over and said, “Look mommy, I got a 6 and a 2 and another 2..”
I braced myself for it being out of like 10 points or something. Instead, I saw 6/6. 2/2. The note said “with TA” which means she had TA support, but look at what she accomplished! This girl with apraxia, a language processing disorder and dyspraxia. I’ll be damned. Nothing has come easy, and I finally feel we have a therapeutic dose now of her meds, she’s in private OT again, her reading plan was changed after conferences to put her back in the classroom while continuing to get pulled for those foundational skills, and I started her on a home reading program called “ALL” recommended in the apraxia groups for kids who are nonverbal; so maybe it’s all pulling together now.
I’m so proud of her. She was so proud of her. When Ashlynn struggled for years to just write her name, I couldn’t imagine getting to this point. All these words and sentences on a paper written by HER hands, and suddenly I find hope again. Hope on this one rubric out of so many that have come back poor, this one rubric is like a diamond in the rough...so it’s now hanging on my fridge, to honor her, but to also remind me we may roll down a lot hills, but it’s never about the fall. It’s how you get back up and try again….
and again
and again in our case. In her case.
So we will.
When we fall we might have a good cry, okay I might have a good cry because Ashlynn doesn’t seem to get sad over all the hard work she is doing. Then we will stand up, more determined than before. I’ll brush myself off, take her hand, and start climbing up again, and again, and again, until we’re at the freakin top because I know if we do this, it may be slow, and it may be hard, but we will always keep moving forward.
Timers can be a useful way to manage behavior, promote task completion, or as a way to motivate the child. Digital clocks and timers are great and convenient, but they aren’t teaching kids an understanding of the passage of time, and are more abstract.
Outloud Timer is different. You have the option to set the timer to either seconds or minutes and then set the time.
A penguin appears and the child can draw a path to the treasure chest. The penguin waddles its way to the treasure box AND a digital countdown is also provided in a small box in the lower right corner. Once the penguin reaches the end, the treasure box opens with music and money sounds, and coins are displayed animatedly across the screen.
As a bonus, I’m also able to touch on some receptive language concepts while they draw the path, working on concepts like: around, next to, left, right, bottom, top, side corner etc. Some kids with a receptive language processing disorder have difficulty with these concepts, so this can be a nice easy way to sneak in some practice just by setting a timer.
In a surprise twist, one client I have actually thinks of this app as the reward! He was too distracted by using the app as a timer, but he LOVED drawing the path and watching the penguin complete it. Either way, it’s a win win.
Also, it’s available on both the iPhone and the iPad making it really convenient.
You can head to iTunes to download the app here where it’s only 99 cents! Or, enter to win a copy in my giveaway. Enter below
I originally started this blog as a way to spread awareness, and maybe commiserate with or even help others on this journey with me.
As a parent and an SLP, I have readers now who are also both. Hopefully there has been something you have found useful on my blog. I have thought before about trying to make money and monetizing my blog, but I personally hate pop up ads, and I feel they would distract from what I wanted this website to be about.
Hope
Education
Information
Awareness
Understanding
A lot of the information in this blog would not be possible because it would not be available, without all the work CASANA has done. I used to think CASANA was this huge non-profit. It’s not. They work tirelessly beyond their 40 hour work week and are absolutely passionate about their mission.
When many people think of charities, they immediately think of the big ones. I mean, I did too. March of Dimes, St. Jude’s, The Komen Foundation, etc etc. I’m not here to discourage you from donating to these worthy causes, but I am here to ask you to also donate to the smaller ones too. Helping kids literally find their voice is an incredible and life changing gift. The reality is, some kids with apraxia will NEVER develop intelligible speech, and this is even more true if they don’t have access to appropriate therapy…..research based therapy that is only now getting done because of CASANA’s efforts.
Let’s face it. It’s hard to get people to care about a rare disorder, much less donate to it or fund research toward it.
My daughter is where she is today because of CASANA. Seriously. If you are my client, or if you have ever called or emailed me and thanked me for taking the time to talk to you, thank CASANA. I’m simply paying forward the kindness and absolute selflessness of the foundation, because that same time and attention was given to me from them as well…..for FREE.
Isn’t that worth $5.00? Just $5.00. That’s a latte. That’s a happy hour drink.
If you find any worth in this blog at all, a $5.00 donation to CASANA would seriously mean the absolute world to me.
Once upon a time, there was an 18 year old girl who received a full ride scholarship to her local metro university. She took public transportation to get there since she couldn’t afford parking, and simultaneously worked 30 hours while going to school full time. Each day she walked onto the train, she wasn’t sure she would actually receive her bachelor’s degree, but she decided she would take it day by day, one step at a time, and see where life led.
One day, 4 1/2 years later, she boarded the same train with a cap and gown in hand riding to the downtown convention center. This center, the location of her graduation from Metro State University for a Bachelor of Arts degree in Speech Communications.
She could hardly believe it. Walking across the stage, surreal. She had accomplished something she was never sure she would achieve, and it felt awesome. This was the end of her academic career to be sure. Though her emphasis was in disorders and she had taken the coursework to be certified as a Speech/Language Pathology Assistant, she would use her umbrella “Speech Communications” degree to now move up in the car dealership in which she was working to become the customer relations manager.
Insert recession. The car dealership was turned upside down. Future plan….shattered.
Cue phone call from local school district inquiring about an interview as she was one of the few to complete the SLPA certification and they would like to interview her for a new position.
Complete interview and accept new position.
Introduce Deborah Comfort and Roberta Fehling. Two seasoned SLP’s. Pioneers. Feminists. Glass ceiling breakers. I was to work under them. They both would laugh at this description, but I can tell you I was in awe of them. I didn’t even think I would complete my bachelor degree and I’m a millennial. These were two baby boomers who had not only completed their Bachelor Degrees but had Masters Degrees.
The Spark
I was inspired by them. Their accomplishments ignited a spark in ME. A spark, I wasn’t yet willing or ready to realize. I tried to push it down and blow it out. Graduate school wasn’t meant for people like me. I grew up in a humble and modest home, with a common phrase of my dad’s being “poor people have poor ways” and I can tell you, graduate school is NOT one of them.
Long story short, they both believed in me. They both urged me to continue my education, but there was no money for grad school and women like them wouldn’t understand that “poor people have poor ways.”
Deborah decided to push harder. I arrived to work one day with her personal recommendation letter along with applications and GRE dates to get into graduate school. I remember scanning the paperwork and then scanning her face. She really believed in me that much, and just to be clear, Deborah was TOUGH. I knew she didn’t do this to just anyone. Why did she believe in me, I wondered. Could I really be like her and have a professional degree and job?
The flame.
I applied to one distant learning school so I would still be able to work and earn an income. It’s hard to get into graduate school for speech, and most applicants apply to many schools. Oh well, if I didn’t make it, it wasn’t meant to be, I reasoned.
Well, here I am, so I guess you know by now I made it. I completed it. However, I never attended the graduation ceremony……. and I regret that.
This past year, the American Speech/Language Hearing Association (ASHA) which is the governing body that certifies SLP’s, gave me an award for media outreach champion for my encounter and subsequent press coverage of Ronda Rousey and Childhood Apraxia of Speech. I was to be recognized at the annual ASHA conference in November. I wanted to go sooooo bad, but finances aren’t great. Therapy, and doctor copays for a child with global apraxia are pretty crippling. There were other personal circumstances as well that made it seem out of reach.
I kept thinking about how I regretted missing my Master’s degree graduation. It felt silly, but I didn’t want to regret another thing. Have you ever heard of this by Paul Coelho?
I believe it. Oh my goodness do I believe it. Problem is, I have to be willing to listen to the Universe.
Case in point? My husband’s incredibly giving extended family from out of state offered to pool their money and pay for it knowing we were kinda strapped for cash in this particular time of our lives. I rejected it. I felt it was charity and if I really wanted to go I could charge the entire thing on a credit card. They offered one last offer, and I STILL declined it.
I was talking to someone about it, and she challenged me on this. She urged me to accept the offer with grace, knowing I would make the same offer to someone else if I were in the position to do so.
Yes, of course I would, but I don’t know. It still felt silly. Accept money from people so I could go receive an award? It seemed self-serving and somewhat selfish. I can’t say it didn’t poke at me though.
A good friend and fellow apraxia mom Linda Power, offered to go and pay for the hotel. She had lived in Philly for a time, knew her way around, and was excited to go back. In this way, I would have a companion, and would only have to pay for the price of my plane ticket and ASHA registration.
Hmm….that offer was tempting. Plus, I don’t believe in coincidences. What a coincidence Linda lived in Philly for four years and she’s a close friend of mine and would like a quick girl getaway. Hmmm…November happens to be my birthday month. I could ask everyone to just give me money instead of presents to pay for my plane ticket.
I asked my mom if that was rude. She didn’t think so, so there we were! Philadelphia, Pennsylvania!
SUCH an amazing time!
The fire
I attended the ASHA convention last year, and I never thought to attend the award ceremony, which is ironic, because it’s the ONLY reason I went this year and that’s only because I was part of it.
I left soooooo inspired. I heard story after story of SLP’s in the field and their lifetime accomplishments. The stories were personalized and part of a video montage. Each story was unique and touching. I had tears and Linda had tears. I couldn’t believe this girl from Colorado who never truly believed she would finish college was sitting in a room with these esteemed people. If you ever attend ASHA, I highly recommend going to the award ceremony. It will make you proud to be in this field.
Also, it made me want to do even better. It made me want to aim even higher. More importantly, seeing the stories of these ordinary people who did extraordinary things, made we want to be more like them.
I don’t know what the future holds. I guess I’ll just do what I have always done, starting from that highschool graduate who stepped foot on public transportation to go to college. I’ll keep putting one foot in front of the other, day after day, because if I do that, I don’t know where it will take me but it takes me further than I am now. It take me further AND my sweet girl Ashlynn. Kids learn through example, or I learn from her. It seems like a mutual enterprise in this house.
That’s what she does though. She wakes up every day putting one foot in front of the other, and for her, even THAT simple act isn’t easy….yet she does it. So again, I have to ask myself,
