SLP Mommy of Apraxia

Tag: dyspraxia

Neurology, delays, a dream, and a miracle.

Most parents of kids who have a child with global apraxia will at some point visit the neurologist. It’s usually before the age of 7, which is the age Ashlynn is today.

I remember the referral, although the dates are a little fuzzy. We were either at Ashlynn’s 6 or 9 month checkup and I had to fill out one of those dreaded developmental screens. Don’t get me wrong, as a professional I’m very, VERY pleased my pediatrician had them; but as a parent each question only served as a slap in my face to everything in which Ashlynn was behind and it was hard. Really hard.

Well anyway, I had mentioned Ashlynn had very tight calves (or heel cords) as the professionals view it. The pediatrician, knowing I was in the profession tread lightly. The result though was a possible referral to the neurologist.

I declined.

So curious to me now. Why did I decline? Why wouldn’t I have at least gone to the appointment? The pediatrician, sensing my hesitation, told me to massage her calves in in the bathtub every night and come back and we could re-evaluate at her next well baby visit. I pounced on the cop out and religiously massaged her calves every night. By the time of her next visit, her heel cords were looser and she could flex her foot. I remember being praised by the pediatrician for Ashlynn having such an involved mommy and she left it up to me if I still wanted the neuro referral. Of course I said no. I could help her. I could do this. I thought for sure when Ashlynn started walking, she would be a toe walker, but she wasn’t. We had to remind her when she learned how to stand to keep putting her heel down, but you would never detect even a hint of toe walking now.

Anyway, that’s water on the bridge, because yesterday found me and my seven year old Ashlynn finally at the neurologist. I actually would have went sooner, but our insurance sucks! I knew going to a neuro would mean a recommended MRI at least, and our insurance comes with the lovely 80/20 policy and a deductible of 5K anyway before that kicks in, so I had to be willing to pay of out pocket basically for her MRI which I wasn’t willing to do. We have her in all the right therapies, I would wait when maybe my insurance would get better. This past year I switched the kids to my insurance plan. It still has a high deductible, but is more manageable and at least offers 20 visits of speech and OT a year, so it’s now or never.

Ashlynn’s “ballerina toes”

The appointment itself was good. She took our case history, and did an exam on Ashlynn. She was a lovely
person who commented how she could not detect any heel cord or tight calves now, what a great and friendly personality Ashlynn has, and when she watched Ashlynn run, commented on how good it looks considering all of her motor planning issues. I was so proud. I told her Ashlynn works hard and gross motor skills are the area in which Ashlynn is seeing the most progress. I added that the school PT said she will probably meet all of her goals and be within the average range within the next year.

She was a resident, so she went to get her supervisor for the final conclusions and recommendations. The supervisor came in and examined everything she missed. I felt bad because in five minutes this woman identified an under-active gag reflex, oral apraxia, and verbal apraxia (based on a measure called the diadochokinetic rate). She didn’t say this aloud, but I knew as an SLP that was what she was examining. They recommended a Tier 1 level of tests first which include an MRI and genetic micro-array testing. I nodded my head. It’s what I was expecting. I know many, many kids now in the apraxia world and this is the next step. We want to see if there is an actual cause we can pinpoint for all the motor planning issues.

Then, this.

“We would classify her at this point as a developmental delay (insert loss of breath. Loss of breath even though I KNOW she has this, it’s just so hard to hear) and that she’s functioning right now around a 4 year old level.”

I just stared back at them. I was thinking, what on Earth did they do to just decide she’s functioning at a 4 year old level? They heard her talk, ok. They have my case history, ok. I wouldn’t put her at a 4 year old level based on that.

“Does that sound about right?”

I kept staring. Her dressing skills. They asked me in detail about her personal care, adaptive skills we call them, and, oh yes. Yes. She can’t brush her teeth independently, still can’t spit, can get dressed independently but usually has things on backward or on the wrong feet……the adaptive skills is what gave them this conclusion….

“Ms. Smith? Does that sound about right?”

I nodded my head. I couldn’t get any words out. It felt cruel. It’s not their fault, it is just the way these appointments are. I thought of Ashlynn’s four year old brother on the way out. He can get dressed independently, brush his teeth independently, spit, can almost shower by himself…..punch in the gut.

I looked over at Ashlynn holding my head walking out of the hospital. She was smiling holding my hand, and holding a notebook and pens in the other hand. Always working that girl. ALWAYS. During the appointment she “took notes” for the doctor and gave them to her at the end. The doctor who smiled and was nice to her believes she’s functioning 3 years under her actual age level. Similar to the day she was dx with CAS and Ashlynn smiled at me and said the one word she could, “hi,” she remains happy and with a positive attitude. I wanted to cry, but I won’t. That’s not to say I’m against crying. It’s just to say it’s not how I want to process it all. I will write it all out and when Ashlynn looks at me I will smile because that is what she deserves.

I turned on “The Fighter” by Gym Class Heroes.

“Just waking up in the morning
And the be well
Quite honest with ya,
I ain’t really sleep well
Ya ever feel like your train of thought’s been derailed?
That’s when you press on Lee nails
Half the population’s just waitin’ to see me fail
Yeah right, you’re better off trying to freeze hell
Some of us do it for the females
And others do it for the retails

But I do it for the kids, life through the tower head on
Every time you fall it’s only making your chin strong
And I be in the corner like mick, baby, til the end
Or when you hear this song from that big lady”

One last thought. My dad has never been a dreamer and he certainly did not encourage us to dream. He encouraged us to work, stay out of debt, and have a plan B. He’s a practical man. I think maybe at one time he did have dreams, but they were crushed slowly until they were snuffed out. Between Vietnam and then coming back with no college degree and no credit, he was a blue collar worker his entire life. That’s why it was surprising the other day when my mom called me and said,

“Dad wants to know if you know what Ashlynn’s name means?” Seems like something I would know. I didn’t know though.

“No, what?”

“To Dream,” she responded.

We both paused.

“Wow” I managed. “Dad told you to tell me that?”

“Yes.”

I was silent. Honestly it was hard to process.

“He told me the other day too, Laura, he believes Ashlynn will be a miracle.”

Silence.

“Wow” I managed again.

So Ashlynn, one day when you are reading this, I want you to remember that Christ once told us in Matthew 17:20 “And he saith unto them, Because of your little faith: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”

So work baby girl, and I’ll work alongside you; but most importantly DREAM and BELIEVE and your entire family will be here dreaming and believing alongside of you.

My dad with four of his grandchildren including Ashlynn

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January 29, 2017
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 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.

December 5, 2016
The decline of the therapeutic relationship and why you don’t have to stand for it.

I’ve noticed something since I’ve had my daughter in therapy. Therapy offices that are small, with only a couple therapists and an actively involved owner, yield happy clients. Conversely, therapy offices only interested in expanding their brand, that staff numerous therapists and have a relatively un-involved owner, have more unhappy clients.

I used to work at a place this happened actually. The owner was fantastic. Smart, personable and caring, her clients improved, her families were happy, and her reputation grew. Soon, she was staffing multiple therapists from two different disciplines and opened up a second location. She became stretched so thin, that she outlined a list of policies and procedures, and then delegated a supervisor and receptionist to enforcing them. The result? Common sense flies out the window. The parent/therapist relationship becomes strained. People leave. I know personally now why this happened.

Recently I was on the receiving end of this. I took my daughter to what was supposed to be a well reputed therapy place in Denver, Amaryllis Therapy Network in the Highlands. I wasn’t too pleased with the evaluation, because Ashlynn has been evaluated three times before with the very same test and this time she scored 20 points lower. 20?? I had to ask myself if that was really accurate and I had quite a long conversation with the therapist who said attention could have played a factor or this or that. Ok. Fine.

However, then she was transferred to a different OT for treatment. They initially wanted to have her see an assistant. I have no problems with assistants. I used to be an SLPA (which is an SLP assistant) and an assistant is more than capable of doing therapy. However, what they are not able to do, no let me correct that, what they are not allowed to do, is change a treatment plan when they see something isn’t working. They are required to consult with the supervising therapist who IS qualified to develop treatment plans before they change it, and that’s just assuming you have an assistant who is experienced enough to know it needs changing. Anyway, I needed someone who can change a treatment mid session if they see something is or isn’t working. My daughter is not a typical case. She’s involved and I don’t want to waste time. I’m not trying to sound rude, but it’s just the way it is. As a side note though, it does make we wonder how many parents reading this even know if their child is seeing an SLPA or a CODA. If they are, just know that you want to make sure a supervising therapist is really staying on top of things in regard to your child’s treatment approach…just sayin.

Anyway, they complied, and I was given a different OT. I wanted a conference call set up between the new OT, me, and Ashlynn’s school OT who is also my colleague, a therapist I trust, and has been with Ashlynn since preschool. When she called, it was clear she had not thoroughly read Ashlynn’s report and then mentioned how Ashlynn had done a “group” therapy.

I’m sorry what? Group therapy? Ashlynn can get group therapy in school. I’m paying for private therapy. I need INTENSE private therapy. She quickly reassured me it was still 1:1 kid to therapist just participating in a group activity. Ok…maybe….but that’s not what I was paying for which even furthered my resolve that we needed a group conference call. I asked if she would email me and she agreed to set up a time. I NEVER received an email.

I’m reasonable. Ok. Maybe she entered my email address wrong? I call the next week before another session has come and gone and tell the receptionist I never received an email, would she email me again. She check the email address on file. It’s correct. Hmm. Okay. She’ll send another one. Perfect, thanks.

ANOTHER week goes by. NO email. My husband is the one that takes Ashlynn so I can’t just bring it up. I’m pretty ticked about this to be honest, but it can still be dealt with…worked through. Probably an honest mistake. However, I’m going out of town and I don’t think I can make the carpool arrangements work to get Ashlynn there this week.

Now, yes. I know I signed 48 HOUR cancellation policy paper. I actually remember signing it because it struck me as outrageous. Who has a 48 hour cancellation policy? Oh well. There are people who do chronically abuse the system, and cancellation policies are in place to protect and respect the therapist’s time. I get that….not only because I just get that…but because I AM A THERAPIST WHO DOES THIS EXACT SAME THING AS A JOB.

Dang! Why is that in caps you ask? Well, it’s because even when therapists, or doctors, or people in a field where they are to care about people have a cancellation policy, it’s usually only enforced to the chronic problem clients. Any person with a heart and common sense, understands that things come up. If someone is abusing the system, then yes. A cancellation policy should be enforced. I was NOT abusing the system. I called 30 hours in advance, choosing to wait until the morning instead of the hour they closed.

This was my first time cancelling, we aren’t late, and my husband probably spends close to 3 hours round trip getting her down there through rush hour traffic and back home. Not to mention the financial hardships families are already going through. You would think someone who actually has a heart and interest in caring about children would have been understanding. I know I am! I don’t even have my clients sign a cancellation fee policy, and if I did…I would give them chances. Unbelievable and SO sad. It’s not right we go through this when we are already bled dry from the cost of therapy. So now, I have to find a NEW place and begin the process again.

Oh, and one more thing. The email situation? The supervisor said it was documented she emailed me twice. “Maybe I didn’t get it due to spam filters?” I went along with it. Afterall, I hadn’t yet checked spam, even though it’s ironic that I DO get all of THEIR spam email. Well, low and behold I DID check, and by check I mean SCOUR my spam email and there was nothing. NOTHING. NO email from her…so now on top of it I can add lying.

Anyway, I digress. I have to find a new place and begin the process again.

Oh…but I WILL begin it again, because I know there are places and therapists who do not feel the need to run their therapy office like a corporation and treat people, actual human beings, as only dollar signs. I know, because I’m one of those people, and I know many, many other good therapists who are ALSO one of those people.

My message to any parent reading, is if you feel like your child and your appointments are nothing but a dollar sign, then you need to leave. That is so unacceptable.

My message to any professional reading this, is you need to know and understand we are counting on you! We are putting our faith and literally our children’s success and outcomes in your hands. Meet us halfway. We are your paycheck, but we are also human. If you are a person running a therapy office like a corporation, take heed. YOU may be an honest and awesome therapist, but don’t get caught in some black and white policy and procedures BS. These are humans, humans with disabilities no less, that you are dealing with. Have some freaking compassion beyond your rules and regulations.

Oh, and for anyone considering Amaryllis Therapy Network in Denver, scratch them off your list and move on. Developmental Fx is where I’m headed, and unlike Amaryllis, I know many families who have been happy with the outcome.

November 15, 2016
I’m never doing enough

Since I’m an SLP, I’ve been in the meetings where we, as well meaning professionals, give our advice and tips. Simple and easy tips that seem so easy, but when you have 4-5 people giving you these tips, the weight seems to get a little heavier.

Such was the case tonight. My grant finally ran out for my private OT and speech services that I was able to get starting at the beginning of the summer. So for the last OT session, I asked the OT to just kinda look at all the skills and give me an update.

She immediately started in on handwriting to start. Handwriting is probably her hardest area right now. I didn’t want to admit it, but when we did our Thanksgiving craft, I thought she might have regressed. Plus, private OT has been working more on gross motor skills and core strengthening, and we’ve seen some big growth. She can finally pedal her big wheel the span of three houses and back, and is able to sit on the carpet in school during circle time without any special seating or weighted blankets. That doesn’t mean her core is better though. I observed her in class on her birthday, and by the end of circle time, she was practically mush melting into the floor.

However, there were improvements….and this is good.

Back to handwriting though. Long story short, we haven’t been focusing on handwriting. As she had Ashlynn write her name, the struggle was apparent. Since I have also worked with this OT, I know her “hmms” and “ok’s.” They meant Ashlynn was NOT doing OK and she had concerns. I waited.

“Have you seen regression in her handwriting?

Me: Groping for words

“I just say this because I hadn’t been focusing on handwriting because the school was. They are right? Focusing on her handwriting?”

I was launched back to her IEP meeting. I remember the teacher saying the kids write their names with the Uppercase AND lowercase letters, and then she looked at the OT and mentioned they could chat since OT’s typically don’t want the kiddos writing in lowercase.

That was the end of it. Ever since then, I’ve noticed Ashlynn traces her name everyday, and that papers come home with her tracing her name after someone had highlighted it first.

I kinda stuttered. Well, I know they have really been working on drawing a person and getting all the body parts. I proudly showed her a sample, and the OT admitted it looked good.

Her name though. Her name. Damnit. I don’t want to admit I saw regression too and now I realize it might have had to do with changing from uppercase to lowercase before she had even mastered uppercase.

I asked if she recommended staying in uppercase and she said yes. That would be best, because we’re going to have a situation where she won’t be able to do either.

Stupid apraxia. Stupid apraxia. Stupid APRAXIA. sigh.

She works so hard too. My poor baby. She knows it’s tough, and yet I see her march on. She tried to smile, act cute, and divert attention, but the OT made her write all those letters….and it was hard, yet she smiled through it all. Knowing she wasn’t writing them correctly. She always tries so damn hard.

I applied for more funding. I don’t know how we can afford private speech and OT, but I know she needs it, so we’ll find a way.

You know what’s so hard, is this same OT that is seeing her is my friend and colleague from my old school district. Before she knew Ashlynn I would talk to her about her issues, and not knowing Ashlynn, she would always say she was sure school OT was enough and that I was probably overreacting. Assuring me not to worry. But then today, the last session until I get funding, her brow was furrowed and she said, “oh I just didn’t have enough time with her.” It killed me to hear, because it means she sees professionally what I have seen all along. Ashlynn needs so much help. As she left, she told me maybe we could plan a playdate over break. I eagerly agreed and then she offered a freebie therapy session. She’s such a good friend and I appreciate her charity, but again, it let me know just how serious this is.

Yay apraxia. Yay GLOBAL apraxia.

As I went to help get Ashlylnn ready for bed, I found myself pulling patience from the depths of me because I know she needs it. She can’t yet take off or put on her shirt. She’s five. I think I mentioned in a prior blogpost my son who is 2 takes it off no problem. That’s hard. It hurts.

Then, the things she can do, like putting on her pants or socks take a very long time. Tonight her pajamas had buttons. I sat on the floor waiting for her to try, and try she did. It took her 10 minutes to button three buttons, but she never gave up. Think about that. 10 minutes doesn’t sound like a long time, but just to button three buttons?!?

Tick tock, tick tock.

I have to wait though. I can’t do it for her anymore. She will never learn that way. I have to sit there, even though I desperately just want to veg out and not think about her speech, her writing, her drawing, her pedaling, her drawing a person, her feeding herself, dressing herself, oh and I didn’t even mention the letters and letter sounds we work on every night I can.

And she always comes through. My nerves were frazzled and my husband emerged from her room and said she told him that she buttoned the three buttons by herself but mommy “did this one” (the last one). She was so proud.

Like I said, the weight is sometimes overwhelming. There is so much to do, and when I focus on one thing, it seems we have lost in another. All I can do is keep on keeping on. I’ll take my cue from Ashlynn. That’s what she does and I love her for it. I just hope I can be the mom she deserves to have.

December 9, 2014
What is your future like when you have GLOBAL apraxia?

My friend Kim, (a fellow apraxia mom and SLP) and I talk a lot about how most people, including professionals and pediatricians, just have NOT SEEN global apraxia. What is global apraxia?

Well, it’s not an official diagnosis. You’re not going to find it in the DSM 5, and when you google it, you’re not going to find some great scholarly articles. Nope.

Instead, you can google Childhood Apraxia of Speech and get some great information now on verbal apraxia thanks to CASANA of apraxia-kids.org. Members of their advisory panel were critical in the recognition of the actual disorder from ASHA (The American Speech/Language Hearing Association).

Google oral apraxia, and a lot of information comes up for verbal apraxia, even though they are two very different things.

Oral apraxia refers to difficulty coordinating non speech oral movements. These include: sucking, blowing, puckering, lip rounding, etc. whereas Childhood Apraxia of Speech refers to difficulty planning the precise movements for speech.

Google plain old “apraxia” and the first two references are to apraxia-kids and ASHA, both referencing Childhood Apraxia of Speech.

The third entry is from Wikipedia, which references acquired apraxia of speech only. This is for adults with brain insults for the record.

The fourth result is from WebMD which does acknowledge it as a developmental disorder as well, but says “typically, it is found in adults.”

Google “dyspraxia” and the first entry form ncld.org indicates “people with dyspraxia have trouble planning and completing fine motor tasks.”

Okay, so she now has: Childhood Apraxia of Speech aka verbal apraxia, oral apraxia, and dyspraxia.

Hmm…but she also has trouble with motor planning gross motor movements as well. So what label is that? Oh, and she also has trouble with visual motor planning as well. So….what label is that?!?

So let’s see here. According to a lot of testing, my sweet little Ashlynn has motor planning difficulties in these areas:

Verbal, Oral, Fine Motor, Gross Motor, and Visual Motor skills.

Does a human have any other motor planning skills? Right now as I type this, I can’t think of any and it makes me so sad. How does that sweet baby with normal cognition, have motor planning deficits in literally every part of her little body?

That my friends is why there is the term “global apraxia.”

You’re not going to find it with a search from google. You’re not going to find it in a scholarly article, but if you do I implore you to email it to me because I have looked!!

You’re not going to find the term global apraxia in the Childhood Apraxia of Speech research, or the developmental motor planning research, on the dyspraxia websites, or searching under the term developmental coordination disorder. I think this is because the research is already so lacking in these specific areas, that we are still a ways away from collectively combining all these separate disorders into diagnosing one “global apraxia.”

However, if you have a child with motor planning deficits in ALL of these areas, I don’t have to tell you, the term “global apraxia” makes absolute, unequivocal sense.

Can you imagine?? A pure definition of apraxia according to medicinenet.com is simply,

“The inability to execute a normal, voluntary motor movement despite being able to demonstrate normal muscle function.”

So as my friend Kim, another SLP put it: her son is essentially trapped inside his body. How awful is that? They know what they WANT their body to do. They see peers or younger siblings executing the same things seemingly effortlessly…..and there they stand. Knowing what they need to do. Knowing what they are ASKED to do. Knowing what they WANT to do, but unable to do so.

It’s almost like being paralyzed, except everyone knows you’re not; so they expect you to do things you simply cannot do.

How does a sweet child respond to that situation? How would you respond? You can’t tell someone you can’t do it, yet they see you as any other child. Normal muscle function, seemingly normal cognition….

I ask you again. How would you respond??

I can tell you how my daughter responded. She would laugh and act cute. Dang she is so socially competent. It worked. Sure they thought her receptive language skills were low and she didn’t understand what they were saying (read into this low cognition aka mentally retarded), but at least it gave her a pass. Other times she just acted like she didn’t hear them. She still does that. Oh…”attention problems” they say.

I ask you again though! How would you respond when adults think you can do something, demand you to do things, that you cannot do?! Oh and remember, you can’t TELL them you can’t…because, well, motor planning has got your tongue.

I can tell you about my friend Kim’s son. He hangs by the door. He tries to escape! Poor baby is so smart!! Does the staff see that though? Not really. They see behavior problems.

I’m also not trying to down professionals. Look. I get it. Apraxia of anything is RARE, much less apraxia of EVERYTHING.

I’m an SLP too. Before Ashlynn, would I have been one of the misguided staff?!?

This leads me to my question though. What is a future like for global apraxia? I honestly don’t know.

I know that my husband is right when he says my daughter always conquers all the mountains. She does. But is conquering the mountain the same as owning the mountain? Will she have a skill, a gift, or something else?

Things were so cut and dry for me. I was good at English not at Math. I was a great speller and poor mathematician. I was athletically inclined and was naturally good at basketball. What about Ashlynn? What will she have?

I know already she has this incredible ability to unite people, to make people happy. Everywhere she goes, despite when she was nonverbal or now verbal, people engage her. They are drawn to her. She is kind. She is accepting. She is sweet to a fault. She doesn’t see bullying, she sees hurting. She is naturally inclusive. She makes people feel good about themselves.

These things make me incredibly proud. But can I tell you a secret? I’m scared to death these “strengths” will kill her inside. Society is cruel. Kids are cruel. Will this be enough to carry her through?

I want her to feel proud of herself. I want her to feel and to know there is something she is amazing at. I want her to know I am always and forever will be proud her…but I want her to feel that for herself.

I already know she’s resilient. I already know she’ll overcome her obstacles. At what price though? What will she be interested in? What will her passion be? Right now, I don’t know those answers, but I know this one.

Whatever her passion is, I will do everything in my power to support it. When she wants something…like to talk…she will work tirelessly and endlessly, equipped with a positive attitude to make it happen, and I will be right there making it happen with her.

November 24, 2014
The high of summer! The fear of “back to school.”

Oh summer, how I love thee. Filled with swimming lessons, play dates; visits to the park and zoo.

During summer, I get to see my children be children. Their carefree smiles light up a room, and the echoes of their laughter can be heard long after they lay down their head. Yes, therapy appointments are a way of life for Ashlynn, but even speech and occupational therapy bring positive updates from the session and we can quickly return to our days of play.

This summer I signed up to a few good facebook pages I found: MamaOT and Inspired Treehouse. I LOVE these pages! Instead of the packet of ideas I would get heaped upon my shoulders during the school year, these pages provide an idea a day to do with your child. Simple, easy, fun! When I just get one idea a day, the load seems MUCH more manageable. I was so inspired, I tried to do the same for speech and language on my SLP Mommy of Apraxia page, since I’m usually doing something related throughout my day with my kids since that at least, comes naturally to me. I really think they helped Ashlynn, and I felt good about incorporating some sort of speech, sensory, or occupational/physical therapy at home.

My husband and I also saw HUGE improvements this summer in the motor realm. Ashlynn climbed a play structure that she had yet to conquer at our nearby park. Who knew how much core stability, bilateral hand coordination, and crossing midline play a part in climbing a simple play structure! Well, I’ll tell you who know.

Parents of children who have dyspraxia!

At the local amusement park, she was riding the tea cups independently. My husband shot a video. During the first two go rounds she was just sitting there, but by the third go round she figured out how to spin the wheel to spin her teacup! You should hear my husband cheer. Who knew how much core strength, bilateral hand coordination, and crossing midline play a part in being able to operate a simple teacup ride.

Oh yeah, parents of children who have dyspraxia.

However, now summer is coming to an end. I see facebook posts ripe with updates along the lines of “I’m so happy school is coming up!” Or memes like this one:

Not me. School. Sigh. What can I say? I have a love/hate relationship with school.

I firmly believe school helps children develop their social skills and gives them important language models, which is especially important for kids with speech and language delays. The first week my daughter went to school shortly after she turned three, she came home singing a tune I actually could decipher, and at that time she was nonverbal! That my friends, is the power of school!

On the other hand, school brings new fears and new worries. I always thought, once she starts talking, I’ll be okay.

Not true.

Now I’m worried about her phonemic awareness skills, language lag, slow processing speed, and being able to write.

My God how much do kids need to do and know now just to be ready for Kindergarten???

I’m not looking forward to the IEP meeting, the parent/teacher conferences, the comparisons I try not to make when I’m visiting her classroom.

Quite frankly…. It SUCKS. Apraxia STILL sucks!

So no. I’m not ready for Ashlynn to go back to school. My SLP friend and mother to two young boys with apraxia who has a blog: Landon Journey just posted this song lyric the other day:

If I could make days last forever
If I could make wishes come true
I’d save every day like a treasure and then,
Again, I would spend them with you.

As my brother says though, “Life’s not fair. Get used to it.”

So farewell summer! I bid you adieu. You have been so kind to us this year. We have made castles in your warm sand, felt the glow of the sun upon our face, cooled off in your waters, and celebrated the milestones and successes at our pace. Though I’m anxious for the coming school year, I have faith you will be waiting on the other side. Welcoming my children to your sunshine, casting light onto their beauty.

August 13, 2014