SLP Mommy of Apraxia

Tag: Apraxia journey

A confession, and a hope for A

A is about to graduate from preschool tomorrow and embark on her Kindergarten experience. She is ready and excited. Her preschool teacher this year is retiring, and what a teacher she was! Ashlynn mimicked and learned SO much from her. I can’t even begin to start with all the things Ashlynn has learned. This woman set everything to a tune paired with some large gross motor movements, and the combination was pure gold for A. I hear what she has learned every night before bed, during her pretend play of being the “teacher,” and with her songs she will randomly bust out when in a good mood.

Great right?

Well, yes of course….and well no, not really. No? Why you ask? Well, I don’t believe this teacher ever really believed in A. It’s a sad and maybe terrible thing to say. I know the teacher liked her. In fact, she called her dolly. It’s just that, there was maybe only one time in all the meetings and conferences that the teacher knew what A could really do, and when I would tell her of all the amazing things Ashlynn learned, she would just smile a half smile. I thought she would be so proud. I always waited for her to tell me that, but it never came. Sigh. Oh well.

In fact, though A is well liked, there was never any teacher who exclaimed how proud they were of her. Who noticed how hard she works. Tirelessly really. Truly. She is always begging for me to do homework. She is always going over what she learned, or practicing flash cards, or hand writing. It’s really sad to me that no one sees that but me. In fact, it felt like they were against her when they were trying to force cognitive testing on me…as though giving her a number would make me see what they see, or rather, didn’t see.

I’m part of a lot of groups now for apraxia. Basically, my facebook newsfeed is apraxia news 24/7. I have friends I never would have had if not for apraxia. Some are experiencing highs, some lows, all riding the roller coaster. I have a few who are having incredible highs and I am SO happy for them. THRILLED! TRULY. At the same time, I can’t help but feel jealous, sad, but also hopeful that A will meet that right professional who will change her life, and to be honest….I really don’t want that professional to continue to be me. I really think next year we will have them. The team she is going to is MY special education team that I actually work with at my job, and ALL the professionals care about their kids, know their kids, fight for their kids. I’m pretty sure A is going to have a dream team next year, but of course, one can never be sure.

Throughout all this I keep being reminded of something I said earlier in my career. It’s been haunting me now, and I really hesitate to confess it. However, that’s never stopped me before, so here goes. I had been at the job for awhile when I was paired with an awesome SPED teacher. She was young, enthusiastic and passionate (much like me). We were both problem solvers and would talk rounds and rounds about kids and how they learn. We were going to change the world. I believed in the kids as much as her. I just knew with our help they were all going to thrive. I remember though, she would call all of her kids “smart.” At the time, I had enough experience with cognitive testing results to make me knowledgeable, but not enough experience with cognitive tests it made me dangerous. At least, that’s how I see it now. At the time though, I really felt I had this learning disability thing down. In fact, I was praised by numerous psychologists for knowing it so well, and for being a great diagnostician myself. Maybe it inflated my ego. I didn’t think so at the time, but I just could cringe now.

Okay I’m stalling. I’ll just say it.

After one IEP meeting for a kid who had come out below 80 on cognitive testing, I had a conversation with this SPED teacher that went something like this:

Me: Jamie, we both believe in this kid, and we both know he’s going to make growth and that he’s got so much potential, but do you really think you should be saying he’s smart?

Jamie: But he is smart! He can do………..

Me: I know! I know! I mean, don’t you think though that we should be honest and not give false hopes?

Jamie: You don’t think he’s smart?

Me: I think he’s……capable. I think we should say he’s capable, because he is, but telling parents he’s smart doesn’t seem ethical. His IQ is in the 70’s.

I cringe again to say I think I won that argument.

How dare I?? How DARE I tell a teacher who believes in her student that he isn’t smart. Who was I? Who was the psychologist? What is in ONE number given on ONE day, when a CHILD IS STILL DEVELOPING?

Oh I’m so mad at that Laura, and prouder than ever to have worked with that Jamie. So Jamie, you probably don’t read this, but if you’re out there, you are a DAMN good SPED teacher, and if your think your student is SMART in spite of a stupid cognitive test, then I hope you never listened to me and say it.

I desperately need a teacher like you right now. I desperately need to hear that someone else other than me and her grandparents think she is smart. I desperately want just ONE professional at some point at least see what I see. I don’t know why I need to hear it. I know in my heart she is not only capable but smart too, but to hear it, just the thought that maybe someday I will hear it……. is bringing tears to my eyes.

I always quote her, but it’s always appropriate.

My dad always said you have to be humbled to make growth. *gulp* For A, I take a bite of my humble pie.

May 20, 2015
Still we rise

I received all of Ashlynn’s reports from her re-evaluation. I knew it would be hard. It’s hard to read those scores and things about your baby. However, I was also proud. So proud of how far she has come. She is the hardest working child I know. The social worker and special education teacher seem to understand her the best. They listed her strengths, which are many. They were thoughtful in their words, and I could tell they both believe in her success.

Perhaps that’s why it came more as a shock to read the speech report. It is too painful to summarize. Maybe in another blog post, years down the road. Not now. Suffice it to say, there were no strengths listed. So much of what she can’t do (which I know) without praising how far she has come and what she can do.

I was upset to learn she tested her in the classroom. Ashlynn’s attention severely impacts performance. Doesn’t she know this? Why wouldn’t you take her to a quiet room?

Well after reading the report, it would seem apparent to me this woman doesn’t like my child and doesn’t see her potential. Maybe that’s why she continued to only receive 30 minutes of therapy IN the classroom despite a report that says she is severely deficient in essentially every area of speech and language. I’m not even the most upset about the numbers. There were things Ashlynn didn’t do on the test I know she can do. I’ve SEEN her do it. I’m an SLP, I can assure you….she can do it. Why then didn’t this woman qualify in her report that despite not performing on the test, she can do x,y & z?

No matter. I have my answer.

I guess when you don’t believe in someone, what’s the point in trying?

I’m crying as I wrote that, but I refuse to cry anymore. There are people who believe in my daughter, and people who aren’t just me.

I took her this morning and told her “Ashlynn, I just want you to know you are smart. You are kind and you’re a hard worker. You can be anything you want to be. You can do anything you want to do.” and you know what that girl said?

“I know mommy.”

Before I enter this IEP meeting, I have Maya Angelou’s words running through my head. Ashlynn…..WE WILL RISE

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

April 24, 2015
Am I the only one?

“Lord woman. We need a jet airplane, a case of wine, and a few days to ourselves. We are living parallel lives.”

I received this text today from a mom I have never met, but who I feel I must have known my entire life. I found her through the marvel and wonder of the internet, and in only a year’s time, I feel I know her life story….not because she has told me, but because she too has a child with global apraxia and sensory processing disorder. He is Ashlynn’s age, and each time I write a blog post, somewhere in Oklahoma, more times than not, a young six year old boy and his mother are going through the same things we are.

The experiences range from the emotional joy of seeing them pedal for the first time wearing their smiles of pure joy while tears of joy run down ours……. to the mundane task of cracking an egg perfectly for the first time.

Whatever it has been…struggling to write their name, being pegged as cognitively deficient, or being the best charmer this side of the Mississippi; our children, and now us, their mothers, are truly kindred souls.

Literally while I was in the midst of emailing Ashlynn’s OT explaining I want the sensory profile in her IEP on Friday to give a full picture of her attention issues and not just ADD, I receive this text from my Oklahoma friend:

“How is Ashlynn’s attention span?”

I knew immediately she meant her son’s sucks and she was looking to see if it was the same for Ashlynnn. I know she didn’t say that, but I knew before she said it that that’s where it was going.

I actually feel blessed for these moments. In these moments when God seems to whisper, “you can do this. You are not alone. I am here for you.”

Sometimes it comes out of nowhere. Again through the marvels of the internet, I know another mommy to a child who has global apraxia, and this mommy is also an SLP! Global apraxia is so rare, but it doesn’t seem that way when I have others to talk to. Others sharing my exact same experience. Somehow she always knows just what to say. Sometimes, it’s just APRAXIA SUCKS, and it means so much more coming from her. She just *gets* me.

I love this quote.

I don’t care that I haven’t actually met either of these women face to face and I don’t care if people think I’m crazy. Truth is, I already know them and they already know me, in a deeper way than some who see me face to face ever will….

And one day there will be a jet airplane and a case of wine. I look forward to it. Until then….

April 21, 2015
Where are the dads in the therapy process?

Working in the schools, I often don’t have the chance to talk to parents as much as I would like. Though there are the obligatory IEP meetings, it’s not the same as being able to see the parents every week and chat about speech therapy; or better yet, having the parents right there in the session with me.

To date, I have seen a little over 20 children who have Childhood Apraxia of Speech, and for all of them, it was their mother with whom I had contact first. Isn’t that interesting? Not 50%, 80% or even 90%. 100%!!

Now don’t think I’m going to start bashing men. Not at all. Actually, this post aims to praise these unsung heroes, often standing in the background, but I’ll get to that in a minute.

When I was at bootcamp, David Hammer touched on an interesting topic I don’t think many SLP’s think about. Men and women may be at very different stages with the child’s diagnosis. Though important, what really stuck with me that I wrote down, was that “women seem to sometimes form a symbiotic relationship with the child.” I nodded my head. That no doubt was true of me and Ashlynn. He went onto say, that may hurt a marriage. Men may not understand that relationship, and are left to wonder where their wife went. He always has parents fill out a questionnaire, he said. He asks the mother and father to rate their worry on a scale of 1-10. Mothers are usually on the high end, with fathers usually being on the lower end. I say usually, because of course there are exceptions to all broad stroked brushes.

Anyway, not only have I personally experienced this, but I see it time and time again with the mothers of whom I am now able to get to know better.

When a child is nonverbal, let’s say a baby, parents anticipate his needs. They know the different cries, the different giggles, the facial expressions, the body language. We do this because a baby can’t TELL us what they need. As Ashlynn grew but still couldn’t tell me when she was: hungry, thirsty, sad, hurt, or scared, my heart broke a little more each time. When she still couldn’t call out to me “mama” but would just wait in her bed until I came and got her, my sadness would mount a little higher. When she was frustrated and would resort to stamping her feet or throwing herself to the ground and I would plead with her to just say “no,” my desperation only intensified. When a piece of my hair had gotten itself wrapped around her little toe creating a tourniquet, so much so that we had to go urgent care, and she had spoken not even a cry; my fear and protective instincts kicked into full gear. I could go on, but suffice it to say, yes, yes I guess I did have a symbiotic relationship with my sweet daughter, because if I couldn’t anticipate her needs, who was going to? She NEEDED me, even if she didn’t know it.

I see those feelings of sadness, desperation, fear, and hope in all the eyes of the mothers I have met. In fact, on a recent intake, I was apologizing for having to ask questions about the child’s expressive language that I knew the parents would have to say no to. However, to maintain the validity of the test, I am still required to ask. As I ask those questions, I think about the stupid baby development questionnaires at the pediatrician’s office that killed me every time. Every time she was behind in EVERY area, and EVERY time, it freaking sucked…but I digress. Back to this client and his parents. After my apology, the dad interjected that it was really okay. They know the reality and it doesn’t bother him. Before I could answer, his wife snapped at him saying, “her daughter has apraxia too, so she understands. ” He looked confused, so I told him that even though I knew and continue to know the reality, it hurts every time I am faced with her delays.

Oh mothers. We become crazy over our own children don’t we?

That’s why I wanted to take the time to share what I see from those tall shadows hanging back in the corner. The realists, the fixers, the large shoulders who hold our small children and maybe our tears. Though they may not be who I meet first, they are certainly always there at the final finish line. When the mothers have been worn down from their endless worrying, on the verge of breakdowns from the exhaustion; it is the fathers who bring their children to therapy. It is the fathers who seem to have some amazing ability to compartmentalize their feelings of sadness and fear, and who push forward when their wives just can’t bear another therapy session.

One father I met basically took over my role and became the best SLP for his son. I remember toward the end of therapy, we were working on /s/ blends, and they had to skip a week because they were going skiing. When they came back and I was asking the kiddo about his vacation, dad kept interjecting “wait..where did we go? Was it SSSSSteamboat?” “Where did mommy and daddy get coffee? Was it SSSStarbucks?” and when the child dropped something it was dad who piped up “uh oh! Did you SSSSpill it?” I looked on and smiled. Yes, it was mom who brought him in on the verge of tears, but it was dad who picked up and finished the pieces. Well done team.

Currently, I have 6 kids in private practice with CAS. Do you want to know the track record for how many of the dads either share the responsibility of taking them to therapy or who are the only person currently bringing them to therapy? 100% Yep….you read that right. Once the child starts making progress and the mother feels she can step back and breathe, it’s usually the dads who see it through to the finish. No, they may not pour over every report, or remember the homework (to many a mothers exasperation), but they are there, every week. Many have red eyes from working all day, since I see kids on nights and weekends. Many have laptops in tow, working while we do therapy. All of them burst with pride at every success. I see it on their faces. I’ve seen the tallest, quietest, and burliest man cry. I see them pat their children on the head with big smiles.

I see you dads, I do. I see you and I thank you, with the biggest thank you going to my daughter’s dad. We love you. Thank you for sticking by us, even if you were criticized, misunderstood, and neglected. Thank you for maybe not being totally prepared for the race, but running the marathon while cheering all the way. Thank you for your strength, your reality checks, and your patience. But most of all, thank you for loving your child the way you knew how. The only way a father could.

April 4, 2015
Success WAS there, and we will revel in it.

Exactly 18 months ago, I wrote one of my favorite and initially most popular posts: Lessons from a Tricycle.

At that time, Ashlynn was close to 4 and still could not pedal a tricycle. I describe how we bought it a couple months before her third birthday when I was pregnant with my son. A year later, I wrote that post and explained that she STILL wasn’t able to ride it. When one has motor planning difficulties, the steps involved in riding a tricycle become glaring.

Core strength
Bilateral coordination
Vestibular and propriocepive systems
Balance
Strength
Endurance

Who knew one needs ALL of the above to do a simple childhood rite of passage like ride a tricycle. In that blogpost, I described “arched back and frazzled patience.” My back hurt every time I tried to teach her how to ride. I would lean over and pull or push her, while she struggled just to keep her feet on straight. I wondered time and time again, will she ever actually get this down? Do you have any idea how heartbreaking it was to have her “walk” her trike back home?? I knew deep inside though she would get it one day. I wrote,

“Success will surely be there, waiting more patiently than me.”

After having my son, I realize how easy people have it. I didn’t teach my son anything. I gave him his big wheel and said “have fun.” I didn’t have to teach him how to keep his feet on the pedals. He just did it. I didn’t have to remind him that while he was pedaling he had to look up and pay attention because he was going to fall off the curb. He just did it, and I’m so proud of him. He loves flying down the street on his big wheel shouting “faster! FASTER!!”

I remember my husband posting enthusiastically when Ashlynn had actually purposefully and independently pushed the pedal forward herself and propelled herself for at least two rotations. We were so sure she had arrived. That was it right? She got it down, right?

No, no it wasn’t. The motor plan wasn’t quite carved out enough in her brain. At least, that’s how I imagine it. I imagine pathways in her brain as a ski slope full of thick powder. Every motor activity requires her to carve a path herself to the bottom. It’s hard. It’s tiring, and when she gets back up the hill to try again, she may swerve off track and be forced to try again.

Once the motor plan is mapped though? Oh boy. Then it’s like the groomed hill, wide and easier to maneuver. I dare say we are beginning to revel in the groomed slopes.

She rode her trike around the block tonight. As I watched her in front of me, the sun was setting, and there she was….laughing, smiling, turning the handlebars when she was in danger of veering off the curb, and going as fast as she could and then stretching her legs out in front of her to feel the wind on her face. This to me is childhood.. This to me is what apraxia had robbed from her for so long. As I watched her, hair blowing carefree in the wind, the setting sun once again caught my gaze….and I realized, the sun was setting on a chapter in her life. There it was….success…just as I predicted, waiting more patiently and more beautifully than I ever could have imagined.

Here’s the video if you’re interested. Warning: She’s so far ahead, she’s hard to see 🙂

March 23, 2015
The day the page went blank.

I can’t remember a time since I learned to write that I stopped writing. I was the girl with diaries, journals, writing pads, and notebooks filled with writing. Obviously now, I continue to write. There was a time though my writing was noticeably absent. I recently scoured my notebooks and old blogs searching for what I wrote around the time of Ashlynn’s diagnosis and came up empty. I had many poems celebrating her birth and first year. One of my last poems was this:

Angel

They told me me you were my baby girl
as you cried hello to us.
I believed them at the time
admist the chaos and the fuss.

They told me you were my baby girl
and when I took you home,
I would gaze upon the sweetest face
I had every yet to know.

They told me you were my baby girl
and I would gaze at you at night.
I would watch your lips
flash smiles radiant and bright.

They told me you were my baby girl
and I have so many flaws;
and you are perfect in every way,
they must have got it wrong.

They told me your were my baby girl
and my baby girl you will always be,
but I know the truth and the truth is,
God sent an Angel to me.

I stopped writing shortly after this. This was the time during her diagnosis. I didn’t start again until a year later when I started this blog.

I guess I could brush it off and say I was simply too busy. After all, I WAS working full time and then coming home each night to continue speech therapy with her.

That’s a lie though. As I’m three years out now and I’m meeting parents who are new to the dx, I realize the devastation and the heaviness was to much for me to even write. To WRITE. My outlet, my creative platform, my emotional release. I wanted to hide it all and be strong. I had to push forward, but as my friend Kim has said, there is always an underlying sadness threatening to break way at unexpected times. A mix of guilt, pain, and desperation to help your child that can only be released through tears. Tears I fought back.

As I met a mom last Saturday, she broke down three different times. She seemed embarrassed to say she hand’t told anyone her son has apraxia because she doesn’t want him labeled. I totally understood what she was saying. If you read my poem, I would suspect it’s pretty universal. We see perfection in our child and our children, and a label means other people see something less than perfect. It is very painful, because despite any imperfections, in a mother’s eyes, our children were “fearfully and wonderfully made.” Psalm 139:14

I’m glad I started writing again in 2012.

My story, OUR story, has been one of success and triumphs. Yes it is still of struggle, but through the struggles emerge victories, however small. Yes there is still pain. Gut punches from reading reports in black and white, but there is also progress and celebrations I might have taken for granted. There are now friends I never would have met, people I never would have known, and admiration for a little five year old girl that might have never been as great. If you talk to any mother who has a child with apraxia, they will no doubt agree that child is their

Hero.

March 16, 2015