This year was a little rough on me. However, positives and good things still happen in any bad year.
I personally believe the life we are given, your life, my life, Ashlynn’s life…we are given this life to learn to and to grow. Christians may refer to this as a “cross to bear.” I know at times, life has seemed incredibly unfair, but in that unfairness I have met some of the most amazing people I would not otherwise have met, and I have experienced joys I would not otherwise have experienced.
I hope regardless of why you have found this website, you have left with a better understanding of apraxia. I thank all of you who read, comment, share, and like my posts. It helps us to know we are not alone and though I started hoping to educate and support others, I have found that it is I who has also gained from it through your comments and support.
I also thank everyone who collaborates with me, professionals who reach out to me wishing to learn more about apraxia, and anyone who reads this with an open mind and willingness to learn more about apraxia.
I truly do believe gratitude is one of the most important practices on a path to happiness.
I’ve been having a hard time lately again. I hadn’t felt this discouraged since Ashlynn was first diagnosed about 4 years ago. I worry so much, and even though we work sooo hard, harder than most people it would seem, we continue to stumble backward. It’s such a terrible place to be.
I start seeing the trees instead of the forest. I start counting each star instead of the galaxy. I start to get consumed in the nuances.
But then……
I went for a girls night. Had sushi and wine with some great friends. The best friends really. Girls who have known me…all of me….me before kids.
There were four of us this night. I have the oldest kids. My other two friends have children 2 and under, and the fourth woman was just married and looking forward to becoming pregnant.
My kids are older now, so I could stay and chat, but the two with young infants had to leave. I stayed and shared a glass of wine with my friend who had just gotten married. I asked her how married life was, wistfully remembering that exciting first year. Her immediate and large smile made my heart happy as a I remembered that feeling through her transparent emotions.
Her countenance shifted as she detailed the possibility of having PCOS – poly cystic ovarian syndrome.
My mind raced back to two supplement bottles in my cabinet above my fridge. I was immediately and surprisingly reminded I had PCOS. That seemed like a lifetime ago. Memories came flooding back to me in that moment. Memories I had seriously forgotten. I read the anxiety on her face. I remembered it, because I had experienced it myself. It’s terrifying to think you have a condition that can prevent you from conceiving a child. In that moment talking to her, I remembered feeling desperate, scared, and anxious. Since I have had two healthy kids, I hadn’t thought of PCOS since this very moment, talking to my friend. Something that had consumed my daily thoughts I had clearly forgotten about.
Mind blown.
It started coming back to me though. She asked me how I was dx. I started to say it was based on what I said, and then I remembered I had had an ultrasound that proved it. I asked her if that sounded right and she readily agreed in affirmation.
Wow
How had I forgotten that? I started to remember more. Oh yes. Only one of my ovaries was working and they discovered that on ultrasound. I remember now. Wow. Again, how had I forgotten that??
Crazy
Crazy because I now have two children. Two healthy, beautiful, amazing children. I have two souls on this Earth who call me “mom.”
Insert tears. “Blessed.”
Blessed.
Blessed.
I realized talking to my friend, until that moment when she was unloading her fears to me, I had completely forgotten about, and written off any memory of PCOS.
I personally am astonished. I’m astonished because this was SUCH a big deal to me. How could it not? I had a disorder that could potentially cause infertility!
I’ve been feeling down…but in that moment. In that moment of talking to my friend, I remembered how desperate I felt to have a baby. I remembered how blessed I felt to kiss this baby…to smell this baby…to nurture this baby as only I could….
And I remembered how blessed I felt to hold her, to touch her, to smell her and to breathe her.
My baby girl. My perfect, sweet, and lovely baby girl.
I have been so consumed with other things, I had seriously forgotten I had worried about ever conceiving a child. I think back now, and that worry had been so pointless. I have not one but TWO amazing kids now. I am so incredibly blessed.
Me and my little man
It made me think. I get caught up in the learning, the attention, and the this and the that. At the end of the day, I’m so grateful and happy my children inhabit the Earth. When it really gets down to it, nothing and I mean NOTHING is as important as the fact they are HERE. They are LOVED. They both give MEANING to my life. My life is better because Ashlynn and Jace are in it. Period. The end.
I will ALWAYS fight for my babies. It’s how I am. It’s in my blood. Perhaps though, I needed to be reminded that I HAVE babies, for that in and of itself is a privilege. A privilege I had forgotten.
Suddenly, it put things in perspective. I remember indignantly refusing genetic testing because I would love and accept any baby no matter what. I do still vehemently believe this (although in an ironic twist we will probably be pursuing genetic testing for Ashlynn), and thanks to this conversation, I remembered that no matter what Ashlynn’s challenges, no matter what potential challenges Jace has or will have…. I STILL would have signed up for them,
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,
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.
