Finding hope again is like finding a diamond in the rough
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.
The two I’m following right now are “Mikey’s Wish” and “The Girl with the Funny Accent.”
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 weeken
d 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.
