SLP Mommy of Apraxia

Tag: Oral apraxia

  • Still on a sippy cup

    Still on a sippy cup

    Ashlynn is 4.5 years old.  Though as a baby she never really had a problem latching or drinking out of a bottle, she eventually showed signs very early of oral apraxia.  I remember looking at some teething biscuits and the box saying it was for 9 months and older and thinking, “are they for real??”  She’ll choke on that!!”
    I remember my sister-in-law talking about babysitting my niece when she was under a year and feeding her cheerios, and again, I thought, “Seriously??  Ashlynn would choke on that!!”

    I remember after I took her bottle away at 12 months, my mother-in-law said she had all three of her kids on a regular cup.  I know she didn’t mean any harm by it, but at the time I felt like a failure.  Ashlynn could barely handle a sippy, and a cup?? Forget about it!

    When she was eighteen months, my husband I decided to take a weekend vacation for two nights and left her with her grandma, and I remember I was still pureeing fruits and vegetables and had sent 8 jars of food. Now that I have a typical 18 month old, I can’t believe she was still on purees at that point.  She could eat the occasional cracker, but she refused any other solids.

    I can’t totally remember when she finally started eating at least pasta and breads.  I do remember though one night going to Mimi’s cafe and ordering their kids pizza.  It was more like a thin crust and she swallowed her bite whole and silently cried.  Her face turned red and she had that look on her face like when you eat a chip that isn’t totally chewed and it scratches you going down.  Another instance, my friend brought over amazing fresh bagels from Panera Bread.  I cut Ashlynn’s up into pieces.  As I was talking to my friend she started choking.  I ran over and pulled up her left arm and started patting her on the back.  The entire piece of bagel came up whole.  My friend was horrified and honestly, so was I.  I lived in fear, worried about when she would choke and I couldn’t get it up.  Another time I fed her shells and cheese pasta roni and I remember telling her she needed to chew!  She would put it in her mouth, and then immediately swallow.  Halloween when she was two was pretty disappointing.  Give her M&M’s?  Are you kidding?  What if she didn’t swallow!! Skittles?  Nope. Sprees?  No way! Anything with caramel?  Not a chance.

    I’m paranoid now.  I still quarter her hot dogs, grapes, blueberries.  I figured all kids have messy mouths, but now that I have my 21 month old son, his mouth is always cleaner than my daughter’s.  He licks his lips and wipes his chin.  Here is a recent “ketchup mouth” pic of her on our Spring Break.  Isn’t she a doll? She’s so perfect, apraxia and all.

    Which leads me to the title of this post.  She still violently chokes on liquids.  I’m talking about it went down the “wrong pipe,” face turns red, lips turn blue, and we have to pull up her arm and pat her back. This is with a sippy cup!  My husband and I enacted a two sip rule, which is working. We tell her, two sips and then breathe.  We’ll see how this goes, but I wish I had got her feeding therapy earlier.  This is usually done in early intervention through the SLP. She had all the symptoms: over-stuffing, choking, difficulty with chewing, and difficulty sequencing the steps for the swallow.  Hindsight 20/20.  If you read this, and this sounds like your kiddo, get them into early intervention!!  You won’t regret it.  Now I have to decide if I put her in to feeding therapy now, do a swallow study…etc etc.

    I hate apraxia.  I really, really, hate apraxia.  With apraxia, they don’t “grow out of” anything.  They have to work for EVERYTHING, but the earlier the intervention…the better.

  • 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. 

  • 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!