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SLP Mommy of Apraxia: September 2012

Saturday, September 29, 2012

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. 

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She's eating meat!

Last night, my husband came home with chicken fingers for dinner.  Ashlynn kept asking for some, but I told her no because she has always refused to eat meat. I'm not sure if it was the texture, because as a baby she ate it when I puréed it with vegetables, and she would eat mushy chicken nuggets, but that's about it. I realize now, many of her picky eating habits were actually symptoms of oral apraxia.

Well anyway, I gave her a piece just to prove to her she really didn't want it, but instead she ate it and asked for more! Huh? This is the same girl who just a month ago raked out of her mouth a tiny piece of shredded chicken I tried to hide in her fettuccine Alfredo noodles! I thought it was a fluke, but then this morning she was eating her scrambled eggs when she started asking for some bacon. My husband gave her a piece, and though she initially acted like she wasn't going to eat it, she went on to eat more!
So, seemingly overnight my little vegetarian has decided she likes meat. Maybe she will start growing taller now with some protein in her!

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Thursday, September 27, 2012

Video tutorials

I've decided I have to turn this unique situation as an SLP and a mother to a child with apraxia into a positive experience.  I can't keep sitting around feeling depressed and worried.  I"m a believer in signs from God, and I believe this a big one that has the potential to positively impact others' lives.  I've decided to make videos of Ashlynn for two purposes: one is for me to see and have a documentation of her growth, and the other is to possibly have examples and ideas for other parents on what they can do at home to work with their child.

I don't know where this journey will take me or Ashlynn, and though I fear the road ahead may hold additional learning disabilities that she is at risk for, I'm not going to sit in pity.  Ashlynn and I are a team and we are going to do something about it! 

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Wednesday, September 26, 2012

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??

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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.

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Thursday, September 13, 2012

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.

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