A tale of two roles: navigating my role on both sides of apraxia.

I first met a fellow mommy of apraxia at the Denver Apraxia Walk.  She was pleasant with kind eyes, and said she felt her 5 year old son needed a change up in speech therapy services.

The next week her son was scheduled for therapy at the private clinic in which I work.

In most cases, I have my parents come with their child into my office.  I NEED them to see what I see.  I NEED them to do what I do.  They are with their child the most, and they are completely capable of carrying over what I am doing, as long as they know WHAT I am doing.

Normally the child might be somewhat distracted by the parent; however, this day, I was the one distracted.  Not by my client, but by his mom.  There isn't one word to describe her face, but there were multiple adjectives rolled into one: worry, anxiety, fear, hope.

These are only a few, and honestly, they killed me.

I understood more when she said she had successfully home schooled 4 other children, some even in college.  I admired her.  She not only stayed home and raised her kids, but she taught them school as well.  Their entire childhood development rested on her shoulders and she had done a good job.

But her baby.  Her last child.  This one was different.

I felt her pain.  I absorbed her worry.  I took responsibility for her hope.

I knew I could help her son.  He wasn't receiving the right therapy.  That was evident from his first session.

I was so moved, I came home and told my husband.  I described her face and how it was hard for me to take because I kept absorbing all of her emotions.

It's hard to watch a mother visibly show almost every emotion I went through with Ashlynn's dx, but then be able to turn that off and be the professional SLP I need to be.

I recently watched an initial video I took when I saw him.  Again, though I was trying my hardest to focus on him, I couldn't help but look at his mom in the background.  The worry on her face is tangible.  I just want to yell out, "I will help him mom."  "Slow down."  "Stop worrying."  "He is going to be okay."

Unfortunately, I know saying all of those things is like telling the sun not to rise.  A mother's worry cannot be extinguished.

Last week though, something was different about her demeanor.  A softness was in her face. Upon further questioning, I discovered her oldest daughter came home from college and told her she saw a difference in her little brother's speech.

That's all it took.  Outside validation from an inside source.

I'm sure that doesn't mean she's still not worried, but I hope a small weight, even if ever so tiny, was taken off her shoulders.

Did I cause her apraxia?

It starts with a question: 
Did I cause her apraxia?  I know I'm not the only mom to wonder this, or worse, believe this.  This is where the guilt sets in.  It set in early and would tap on my shoulder in the shower, at lunch, or when I was trying to go to bed.

Even though I'm an SLP, and I tell parents all the time that the speech delays are not their fault, I still felt like somehow I must have done something wrong.  Maybe my C-Section had something to do with it.  Could it have been the petocin, the pain meds, the stress? Maybe if I had only taken my pre-natal vitamins more strictly and just dealt with the fact they made me sick.  Then, after she was born, maybe I didn't talk to her enough.  Maybe I didn't give her enough attention.  Maybe it's because I went back to work and she was sad her mom wasn't there full time.  Maybe it's because I talked to her TOO much.  I was trying TOO hard to make her talk she never had a chance to just be herself.

Ugh, enough already!  It's exhausting to feel this way.  It's exhausting to go through every scenario in my mind wondering if there was something else I could have done, not done, tried to do.  She has apraxia and the truth is, there is nothing I could have done to prevent it.

I know it's not my fault, but....is it really not my fault?
Now, I just have to believe this. That's the hard part. I'm not alone because I read stories almost daily on my support group page of parents wondering if it was the c-section, should they have breastfed or breastfed longer?  Was it the food they ate, a cold they got, a toxin they were exposed to......the list goes on.  Theories with no basis that mothers will beat themselves up over.  Well, I want to tell you to stop it.  I know it's hard, I know it's still in the back of your mind, but if our thoughts become our truths, then this thought process is a cancer.   Further more, it doesn't matter.  It doesn't change the fact your child or my child has it.  What does matter are our actions right now to make it better.  To fight for our child and help them through it.

How I actually banished the guilt
I have finally shed my guilt over it, and the credit is due to my son.  My typically developing son who is so eager to be older and to grow up.  He learns things and picks up things without me literally doing anything.  He is 18 months and already sings his ABC''s.  I have NEVER worked on this song with him. That's how easy talking is supposed to be.  Despite my daily dose of the alphabet song with Ashlynn well into her third year, she only could sing it at 3 1/2.  My son, on the other hand, picked up the iPad, listened to it on repeat for a couple days, and started singing it.  I remember watching a video on facebook of a friend's  2 year old when Ashlynn was the same age and crying thinking what a bad mom I was.  This little girl was younger than Ashlynn, singing her ABC's and I'm supposed to be an SLP no less and still my little girl wasn't singing it.

Last night we were eating noodles for dinner.  My four year old with apraxia kept resorting to using her fingers, and I kept prompting her helping her to use her fork.  It's hard to pick up spaghetti noodles that need to be scooped rather than stabbed.  I briefly looked back at my son in his highchair, and he was not only scooping up the noodles like a pro, but he was stabilizing the bowl with his other hand to steady it.  I looked at this situation in awe.  Again, I have maybe once showed my son how to scoop with a fork instead of stab, and here he was, doing it as well, if not better, than Ashlynn.  That's how easy it's supposed to be.  He picked that up without any special help from me, and even after years of practice with Ashlynn, she still has a hard time.

I start to realize even more, her progress or lack of progress or slow progress is apraxia's fault.  It's not my fault or her fault.  It's not anyone's fault. 

This morning I was asking my kids what they wanted for breakfast.  I threw out two ideas to my son and he shook his head and said 'no.'  I have never taught him the word no.  I never had to teach him that instead of stomping his feet and throwing a tantrum, he could simply say, 'no.'  He just does it.  There was a time that the child throwing tantrums instead of saying 'no' was my daughter at 2 1/2.  Myself, my husband, and my mother-in-law literally had to tell her for months to stop and say 'no.'  Yes, that happened.  I actually had to teach a child to say NO.  Chances are if you have a child with apraxia, you have been there done that. 

If you are a mother and are looking for something to fault, then I suggest you personify apraxia and fault the disorder.  It's not your fault.  You hear me?? It's NOT your fault.  Even if you have two kids with it, it's still not your fault.  Stop the guilt.  Stop the obsession with trying to figure out why your child has it.  It doesn't matter anyway.

I say this to you again as a parent AND an SLP; talking should be easy.  Though it is a highly complex skill that parents only fully realize when they see their child struggle, a child should talk regardless of what you did or didn't do.

I just want to say one more thing.  I think parents get the message that it's their fault when the SLP (myself included) gives them suggestions for home.  These suggestions might be to make their child grunt or make some type of sound or word approximation everytime they want something.  Don't let them get away with saying a sound wrong that you have heard them say correctly in therapy.  Don't let them point and give them what they want when they can say a word for it etc. etc.

I want to tell you we say these things not to fault you.  Parents of typically developing children didn't make their child talk.  Their child just naturally did so.  Don't listen to your family member, or well meaning friend or whomever tell you it is your fault because you never made them talk.  Children don't have to be made to talk.  I really  BELIEVE this now with my son.  I have never made him talk.  He talks so much I can't make him stop talking. In fact, the one time I did try to teach him a word I was trying to get him to say "Jake" when requesting the show "Jake and the Neverland Pirates," since Jake would be easier to say.  Well guess what?   He didn't say Jake, he said pirates instead and has continued to do so.  So there you go.  I am the same mom, the same SLP I was with him as I was with Ashlynn, and I am here to tell you I tried my DANGDEST to get her to talk.  I did everything I knew how to do as a professional.  Guess what though?  She has APRAXIA.

So for now, I've channeled all that guilt and blamed it on Apraxia.  I wish you the same!

"I Will Wait" Struggles have made victory that much sweeter.

Ashlynn's progress continues to grow by leaps and bounds.  So many times I catch myself smiling and my eyes well up with tears to see her knock down all of her obstacles.

Last month she learned to jump for the first time at 3 1/2.  At the beginning of the year, it broke my heart to watch her try on a classroom trampoline.  On their turn, all the other kids exuberantly bounced away.  When it was Ashlynn's turn, all she could do was march.  Now, she is not only exuberantly bouncing, but she is catching air in my kitchen, on my patio, and even on her bed.  I was scolded for jumping on the bed, but I don't care if she busts every spring and I have to buy  her a new one.  It's worth it.  It's all worth it.  Every penny spent, every happy and sad tear shed, every minute in therapy; it's all worth it!  

She also sang to a song that she had never heard before in the car last week.  Mumford and Son's "I Will Wait" song was on the radio.  I was singing to it, and all of a sudden I heard her.  Her little voice filling the car with the chorus.  There are no words to describe the feeling.  I will buy the CD and put the album cover in her baby book. 

These little triumphs, so sweet when  you have a child with a developmental delay.  She has taught me so much.  We may have had challenges, but we experience something so much sweeter when there are victories.  We appreciate all the little things so much more.  We never take for granted, not even for a second, her talking, her jumping, her SINGING.  

Ashlynn's at four words! Update

Ashlynn is literally making leaps and bounds in her speech.  Sometimes, I feel like we are actually having a mini conversation.  I think the greatest aspect is her being able to tell me where she's hurting, or even tell me what she wants to eat.  She tries to repeat everything now, and even has some sponteaneous four word utterances! 

The past week, her new thing was "too" as in, "Ashlynn go ni night too?"  or "Ashlynn eat dinner, too?"  That counts as four words!  Yeee haw!!  She's also said, "I want more ketchup."

This past month, after hard work from both her SLP's and myself, she marks every final 't' 'p' and 'n' consonant.  Getting to that point though, wasn't easy.  Practicing CVC words, you could see her brain thinking as she groped for the correct sound.  She needed a visual and verbal cue every time.  For example, when saying "hat" she would say,
ha       t.  The pause time could be up to 3 seconds, which doesn't sound like a lot, but is when you are talking about speech.  Now she has it down though!  Such a small step, but so big at the same time!  Having a child with apraxia makes one wonder how we ever learn to talk at all?? 

She puts chapstick on her "yip", and has Jace sit in her "yap."  She puts a "hat" on her head, and drinks with a "sup."  She can tell me perfectly "I want down" and that she wants "out" or to put something "in." 

She also gets tickled by everything and laughs "Silly_____."  My favorite is of course, "Silly Momma" but "Silly baby"  and  "Silly Daddy" are pretty popular around here too.

Oral apraxia

Looking back, there were SO many signs that told me Ashlynn had apraxia. Before she even spoke, there were things she couldn't do that I knew wasn't normal. However, my family, my husband's family, and even my husband told me she would do it on her own time, or all kids develop differently, or to stop being so critical of her. Despite my training and perhaps wanting to believe them, I ignored these signs even though deep down I knew something was wrong.

What were these early signs?

For one, Ashlynn never blew raspberries. To this day, and she is almost three, she still can't.
Ashlynn couldn't blow out candles or blow bubbles, and to this day, she still can't.
It took until she was almost two to learn how to drink from a straw, and even now she frequently sputters and chokes when drinking.

Well meaning family members told me I was being too picky about these things, but my mommy instincts were right.

Other signs were feeding issues. For the most part, Ashlynn was a great nurser. However, poor nursing can be an early sign. She also did really well when I introduced puréed solids. After that, her feeding issues became more complex. She struggled with masticating or chewing her food and then swallowing it. This oral motor sequence was very difficult for her to learn.  I was scared to death to even give her Cheerios when she was 9 months to a year because she would immediately swallow them.

When family members or friends would offer crackers or other food items, I would panic. However, I was told by everyone, including my husband that I was babying her. How would she ever learn if I didn't let her eat it? I was so frustrated thinking I was being paranoid and being a helicopter parent already, but guess what? I KNEW my baby better than anyone, and if I just would have listened to and trusted myself, she might have got help sooner.

Other signs of oral apraxia which she has include: not being able to lick her lips, not being able to spit out food, stuffing or overfilling her mouth, and not being able to pucker her lips for a kiss :(

What really makes me mad, is my college training didn't train me in this. These are things I have learned just on my own. Of course one could argue that graduate school teaches us how and where to find these answers, and of course our ongoing professional development requirements provide opportunities to learn this, but its not enough. Every SLP needs to know this stuff!

I had a professor, Patty Walton, for my undergrad and grad degree here in Denver who taught a stuttering class. It was the only class she taught because she had a full time private practice with a focus on stuttering. She said that what she realized, is SLPs were graduating without any knowledge on how to treat stuttering. She might have been an expert, but she at least wanted SLPs to have a basic knowledge in the treatment of the disorder. In fact, she had met many a therapist who admitted they didn't feel comfortable treating stuttering.
She and other stuttering experts have definitely done a great job of educating newer therapists, because most therapists I meet who are around my age or younger feel very comfortable treating stuttering.

In my opinion, apraxia is the new stuttering. In my speech department for my school district, no one is trained in PROMPT that I know of, and when people have a child who they suspect have apraxia, they borrow the set of Kaufman cards or the Easy Does it For Apraxia book out from the department.  I have faxed multiple clinicians the information I had on apraxia from the professional development I attended when Ruth Stoeckel was here because they didn't have any information on apraxia at all!!  My field needs to address this! I don't know where my road will take me, but I want to make sure we have SLPs graduating with a clear understanding of motor speech disorders and treatment. 

Baby development screens

When I held my baby, and even when she was in utero, I had visions and dreams of her being this incredibly verbose child with a large vocabulary.  In fact, I dreamed she would be like me.  The first few months brought all the regular milestones: tracking with her eyes, smiles, giggles, and even rolling over.

However, she did have a case of very pointy toes.  So pointy in fact, I couldn't get her foot into a flexed position to even put on shoes.   During her developmental screens I filled out at the doctor's office, she started losing pace. Motorically, she wasn't able to sit alone without help at 6 months, she wasn't crawling, or even able to get up on her legs and rock back and forth.  Verbally, she wasn't babbling.  She would coo, but not babble.  I just didn't get it.  Despite my almost constant visual modeling and babbling to her, she would just smile and giggle.  I put her in front of mirrors to have her look at her mouth, but she appeared disinterested.  I consulted with other colleagues who gave me all the suggestions I was already doing, and told me not to worry.  There was one colleague who suggested baby sign and told me lack of babbling was a sign of apraxia, but I wasn't ready to hear that.  However, I did start signing with her.  I bought the signing time videos and signed to her throughout the day.  Peculiarly though, she wasn't able to imitate my signs either.

To address the pointy toes, her pediatrician and I discussed the possibility of CP based on my case history of her delivery.  We talked about a referral to a neurologist, but I was convinced I could help her.  The pediatrician told me to work out her calves daily which I did religiously every night in the bathtub.  Her calves were so tight and I would have to massage them until I could finally get a small flex in her foot.   By a year she was able to flex her feet and I was praised by the pediatrician who said it was so great she had such a knowledgeable momma.  I didn't realize this would start my damaging thought process that if I sought help I wasn't being a good mommy.

Since she only had one word "hi" at 1 year and wasn't even babbling other sounds, the pediatrician raised her eyebrows and told me she could make a referral to child find.  However, I was convinced that another SLP couldn't do anymore 30 minutes or 60 minutes a week than what I was doing with her every spare chance.  I utilized all my therapy techniques.  We continued with sign, even though she only caught on to a few, and we played while making various sounds, since imitating sounds precede speech.  I bought a play zoo and play farm and I made the noises the various animals make while she sat quietly and giggled.  I would ask her to say, "moo" or "quack" and she would just smile. We played with cars and pull toys while I made the sounds "vroom, bonk, beep beep, etc."  She wouldn't utter even a sound.  I bought and read books that were repetitive such as "Brown Bear" or books that had sounds such as "Mr. Brown can Moo, Can You?"  I was so frustrated as the days went on, but continued to try and work with her every night after work KNOWING that these techniques are evidence based and WORK!  I kept telling myself I knew they would work eventually.  I remembered reading a study in regard to the Hanen therapy model of teaching parents how to work with their children with a speech delay.  In it, the authors said that the techniques are used by parents of typically developing children that are just abandoned by parents of children with a speech delay because they don't appear to be working.  If there is no reward or positive feedback (i.e. the child mooing when the parent moos), than the parent will not do that anymore.  I was determined to stick with the techniques despite weeks and months going by without them seeming to work.

My husband, sensing my frustration, bought a baby babble CD.  He explained it wasn't to undermine me, but just to help.  I was actually relieved.  Maybe they knew something I didn't.  There was a tip section for parents on working with children.  I watched it over and over hoping to glean something I wasn't doing, but I was doing everything they suggested and then some.  Ashlynn was so smart, but why wasn't she talking??

2.5 years

On my Spring Break, my daughter was 2 1/2.  Before that week I was home full time she had about 5-10 core words; however, she was just labeling things like mama, dada, and doggie.  By the end of Spring Break she was requesting juice, water, and milk with one prompt!  My mom and mother in law immediately noticed and told me how great it was she was talking more.  I was so glad and happy to hear their feedback, but at the same time, I felt guilty for working.  Here I was helping other children when my own child was at home NEEDING me.

By summer she had added quite a few more words and had reached around 50 expressive words.  Again everyone noticed and celebrated her success, but I could only focus on the fact that this milestone is achieved for children around 2 years of age, which meant she was about 8 months behind.  When summer hit, we did therapy all day long.  At breakfast she had to choose between two items and attempt to ask for one of them while pointing.  The same went for play activities.  We sang our ABC's and assortment of nursery rhymes all morning long; and on our walks we played "I see" instead of "I spy" since she couldn't say "spy" but could say "see." I had activities that focused on final consonants that we played with since she didn't seem to have these.  I had a wagon with a variety of rocks and sticks to practice final 'k,' I had "The express train" speech CD I played everytime we were in the car and reinforced during our play activities.  We paired gross motor activities like moving a car or pushing the swing and saying "go" and the list could go on.

Despite this daily dose, she still couldn't sing her ABC's, and she could only put two words together with my prompting word by word, such as "see (see)  house (house).  On facebook a friend's younger daughter sang the ABC's beautifully, another friend's younger daughter sang "You are my Sunshine" with 95% intelligibility.  My younger nephew talked to us on facetime and was putting 2 words together such as "dog little" and "baby sleep." I couldn't even think it was cute or be happy.  Instead, I just felt like crying because my baby couldn't do these things.  I also felt embarrassed, because I felt like her speech was a reflection on myself as her mother and as her SLP.

Background and suspicions of apraxia in my own daughter

Apraxia has been a topic of intense interest to me, ever since I was a speech/language pathology assistant.  Apraxia is misunderstood even among the SLP community.  Many SLP's learned about apraxia, but may not have the skills or experience to correctly diagnose and/or treat it.  I was fortunate to have a mentor who was familiar with the disorder and who took me to a professional development workshop given by Ruth Stoeckel from the Mayo Clinic.  It didn't take long to put her therapy techniques into practice.  Denver Public schools has a high rate of children living in poverty.  These kids many times didn't receive early intervention, and therefore may start speech/language therapy for the first time in Kindergarten. 

I remember one boy in particular.  His name was Daniel and he won my heart immediately.  He had a million dollar smile that made my heart happy every time I saw him.  He was sweet, friendly, playful, and funny.  Unfortunately, his classmates couldn't see what I saw because Daniel didn't talk.  His IEP read that he had a basic speech delay, but fortunately with my training I quickly realized he had apraxia.  I changed his service delivery to 4 days a week and we began intense therapy sessions.  Daniel was the hardest worker.  He was so motivated, and despite repetitive and intense drills, he tackled them all and never once complained.  By the end of that semester,  his dad heard him say "hi dad" for the first time.  He was so overcome with joy he cried.  Daniel's smile had never been bigger.  We had practiced so long and so hard just to get those two words out and he had done it!  I never realized then that 4 years later my own unborn daughter would be struggling with the same disorder.

I knew something was wrong when she didn't babble.  She smiled, cooed, and laughed, but she never babbled.  Friends and family members told me I was being too picky because I was a speech/pathologist; but in my heart, I knew something wasn't right.  Despite my daily, almost nauseating dose of blowing raspberries and babbling to her, she still didn't babble.  By her first Birthday she had successfully learned the word 'hi.'  It was by far her favorite word and the most powerful since everyone she said it to responded back to her.  However, this was her only word.  My colleagues reminded me you only need one word by your first Birthday, but I still had this gut feeling something was wrong.  She couldn't drink out of a straw, she had trouble even drinking out of cup, and I always feared she would choke because she didn't chew up her food all the way sometimes either. 

By the time she was 18 months, I knew she at least had a delay.  Kids this age start to go through a "language explosion" adding new words to their vocabulary almost daily.  Each month I waited for this milestone, and each month passed without her meeting it.  By now my colleagues were starting to agree she was delayed and encouraged me to take her in.  Call it pride or denial, but I just couldn't bring myself to take her in.  What would they think of me?  I'm a SPEECH/LANGUAGE PATHOLOGIST for God's sake.  I must really suck at my job if my own child can't talk.  I thought these things despite knowing that a speech delay or disorder many times has no known cause.  Children learn to talk even in homes where there is very little language.  In fact, I tell heartsick parents daily that it is not their fault.  However, I felt like my situation was different since I was an SLP.  I felt I had failed her.  What's the point in having a mom who is a speech therapist if she can't even teach you to talk.

Every day after work I would come home and work again with my own daughter.  I was racked with guilt if I didn't do therapy with her one night because I was too tired or busy.  She needed me.  The burden was getting so heavy and I was feeling crushed by the responsibility to not only be her mom, but her SLP as well.  During this time, she did make gains.  On my Spring Break, when she was almost 2 1/2,  I had her requesting juice, water, and milk for the first time.  I was thrilled with the breakthrough; however, her words were imprecise and not easily understood by others.  I enrolled her in a nearby junior preschool so she could get language models and see other kids getting their needs met through language.  My heart fell when a little boy her age walked up to us and said as clear as day, "Hi!  My name is Brian.  Would you like to play with me?"  My poor baby could only say 'hi.'  I started gaining a better appreciation of how my students' parents feel. 

By the time summer came around I was ready to have my second child.  We worked on my summer break for an entire month, and she gained so many words; however, talking remained very difficult for her.  Talking shouldn't be so hard.  Watching her grope for sounds and words gave me a real world appreciation for just how complicated talking really is.  All that training in graduate school came flooding back to me.  I remember my professor saying how it is a miracle any of us learn to talk at all when you consider all the muscles, nerves, and cognitive functioning that go into talking. 

When my new baby came, I had no time to devote to her.  She had a terrible adjustment.  She was so used to getting one on one time with me everyday, and now she had none.  I had mom guilt now along with the lingering guilt I felt as a speech therapist that couldn't help my daughter talk.  I was sleep deprived and exhausted.  I finally decided to take her into Child Find.  I knew she would qualify, but I felt like such a failure.  By making that appointment, I had to accept that I had failed her.