SLP Mommy of Apraxia

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  • It’s hard to explain how global apraxia affects so much

    It’s hard to explain how global apraxia affects so much

    We went on a Santa Train again this year at Georgetown Loop Railroad.  Ashlynn has never talked to Santa before.  When she was 3, she cried and clung to her dad for dear life.  When she was 4, we went on a different Santa Train, and though she wasn’t scared, she was too reserved to say anything audible enough for him to hear.

    This year a four year old girl was sitting across from us.  As her parents were asking her what she was going to ask Santa for, she eagerly said she wanted another Elsa doll.

    Ashlynn’s not really into Frozen, or any movie really.  Though each year we try, she just has no desire to sit and watch TV…much less a movie.  As for toys, we took her around a toy store three times leading up for her birthday, and though she was mildly interested, it’s just not like the “kid in a toy store” image that might usually come to mind.

    Fortunately, I have my friend Kim, an SLP who also has a son with global apraxia.  I also have a 7 year old client with it too, and interestingly enough, they all are similar in these areas.  They don’t have an overt interest in movies, TV, or toys.  Why?  I really don’t know.  The toys I think has to do with their struggle to play with toys they would cognitively be interested in, but can’t mainuplate because of the gross and fine motor apraxia.  That happened to her last year when she actually asked for baby clothes but then couldn’t put them on or take them off the baby.   To engage in imaginative play is equally as challenging due to their delayed speech and language skills.  Who knows.

    All I know I I started to feel sad listening to this four year old chatter away about what she wanted….until it was Ashlynn’s turn to sit with Santa.  Though he kept asking her what she wanted, what she wanted was to talk.  She asked him “What’s this?” and “What are you doing?” until he smiled and then moved onto another kid.  As he was walking away, she grabbed me frantically and said, “I need presents!!”

    Smile

    Oh Ashlynn.  That’s my Ashlynn and she’s perfect and in that moment I had nothing to be sad about. All she wanted, all she’s ever wanted is to engage people in conversation, and then as an afterthought she thinks about herself.  Even then though, she had nothing specific.  Just presents.  From the outside I’m sure she looks like a typical 5 year old, and it’s hard to explain just how involved her needs are, or how they affect so much.

    However, today, she asked for presents from Santa Clause just like a typical 5 year old and she will find them waiting for her on Christmas morning.

    from the outside in

  • Apraxia? How does that affect her vision and hearing?

    So today I took Ashlynn to her 5 year checkup at the doctor’s office.  Her pediatrician is one I met at a pediatrician’s office, but who decided to go work at a family medicine facility.  I love the pediatrician, but having her housed in a general practice creates some challenges….such as today.

    The regular physician assistant was out on vacation, so  another one was there to fill in.  Though she was friendly and seemed good with kids, she really had no clue.

    This was the first year they did a vision and hearing screening on Ashlynn.  I didn’t know what they were doing until she asked,

    “Is she better with shapes or letters?”

    Huh?  Oh.  I realized then she was talking about the vision board.  Oh Lord help me, “The shapes I guess.”

    Ashlynn knows her shapes, and knows many of her letters, but as I’ve written about before, word recall really gets in her way.  I’ve had to tell professional after professional, “You need to have her point for it to be a better indicator of what she really knows.”  Today though I thought screw it.  Whatever.  Let’s just see what happens.

    She takes her out into the hallway and has Ashlynn stand back at a distance.  She points to a star.  “What’s this?”

    Ashlynn, “A rectangle.”

    Me (talking silently to myself): Oh boy, I can see how this is going to go.

    And it went.  She missed every single shape.  When the P.A asked her simple yes/no questions, “Is this a star?” she decided to answer, “no.” For EVERYTHING.

    “Any concerns with her vision?”

    Me:  “No.  She has apraxia.  When she gets put on the spot she has severe word finding issues and just gives you an answer trying to please you.”

    P.A. looks at me skeptically.

    Sigh.  I hate apraxia. This girl can spot a spider on the wall an entire room away, notice her daddy’s new haircut within seconds, or when decorations in the house change, within minutes.  No…I have zero concerns about her vision.

    Back in the room, we wait for the hearing test.  She comes back with a hand held device.

    P.A. “Now raise your hand when you hear the beep.”

    I mean really?  I wanted to start laughing.  My daughter has global motor planning issues!  I should have laughed, because as the saying goes, if you don’t laugh, you’ll cry.

    P.A. “Do you hear that?”

    Ashlynn: “No”

    P.A. turning up volume.  Ashlynn’s eyes dance in recognition. “Did you hear that sweetie?”

    Ashlynn: “No”

    My mind starts to wander.   I have absolutely NO concerns at this point in time with vision and hearing.  She’s passed all of her school screenings and this girl can be distracted by the tiniest noise.  Just ask all of her teachers, including in swimming.  This girl can hear. However, here I am watching this and I wonder, how many more professionals will underestimate her?  This P.A. was ready to pass on a referral for hearing and vision.  It’s not fair.  This is why I don’t want a cognitive test in the spring.  This is why……

    P.A. “Ma’am?”

    Okay, reel yourself in Laura.

    The rest of the visit went great.  Her pediatrician praised her speech and was genuinely impressed.  She laughed when I told her about the screening, and said if I didn’t have concerns she doesn’t either. That’s why I love this woman.  She has a son with autism, and she knows, just like I know, a mother is your best reporter.  She is the expert on her child.  She respects my decisions even if she doesn’t agree with me, and that is the kind of person I need helping me and my child.

     

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  • Does my child have a speech delay?

    Does my child have a speech delay?

    When you baby is born, you can’t imagine anything more perfect you have ever seen on Earth.  Their newborn baby smell, their soft skin, cuddly folds, pouty lips, their eyes little windows to their soul.  In that moment and from then on, you experience a love you have never known before.  An instinctive and protective nature instantly resides within you now, and you will literally go to any lengths to ensure they survive and thrive.
    As they grow, there may be signs that tip you off things aren’t quite right.  If I’ve learned anything being a mother, it’s that a mother (or parent/caretaker) knows her child better than any professional on this planet.  They may not have the diagnosis, the name, or the treatment plan; but a mother knows her child’s symptoms better than anyone.  I have found if I really listen to the mother, the diagnosis lies in their description.
    I wanted to write a list of milestones, red flags, and suggestions parents can do at home.  This is part I of my series.
     Parents can be tireless in their search for answers when it comes to their perfect baby.  If you have found this blog because you are concerned your child has a speech delay, I hope this series can either ease your mind, or convince you to seek an evaluation from a certified speech/language pathologist.  If you’re unfamiliar with some of the terminology, you can click here for a list of terms.
    Milestones:
    v Birth to 3 months – Babies exhibit reflexive behaviors that allow a parent to interpret their needs.  For example, your baby might cry or turn her head a certain way when she’s hungry.
    v 3 months – Babies start cooing.  This is where babies use primarily vowels and voice them experimenting with various pitch and volume.  Babies also start smiling around this age.
    v 4 months – Babies start blowing “raspberries.”  Eye gaze develops helping to express intent. 
    v 6 months – Reduplicated babbling may appear around this age.  The baby will babble a string of repeated consonants and vowels such as “mamamama” “dadadada” or “babababa.”
    Receptively, the baby should begin localizing a sound source by turning his/her head. 
    v 9 months – Variegated babbling emerges.  The baby, now adept at reduplicated babbling, starts to experiment with changing consonant and vowel patterns: “ma-da-ma-da” etc. 
    Receptive language starts to really pick up here.  The child should understand basic words like ‘no,no’ and start responding to his/her name.  
    v 9 months to a year – This period usually brings about the arrival of the baby’s very first word!
    v 12 – 18 months – Has at least one word at 12 months and uses 12 or more words by 18 months.
    *there should be a lot of babbling and imitating sounds and words. Pointing, jabbering, waving, and attempting to imitate simple words all occur during this time frame as well* 
    Receptively, the child will begin to follow simple commands, identify objects by pointing, point to various body parts, and understand simple questions.
    v 18 months – Around this age, toddlers normally experience a language explosion between now and 24 months.
    v By 24 months of age – Jargon/jabbering should be mostly eliminated by this point.  Kids should be using around 50-75 words and putting two words together by this age if not sooner.
    Receptively, kids will understand more than 200 words!
    v 3 years – Children will use around 300 words.   By this age, the child should be around 75-80% intelligible.  It’s important to note that children at this age may not have mastered all their consonants; however, they should still be fairly intelligible. 
    v Receptively, Kids will understand about 900 words!
    When to seek an evaluation

    Your pediatrician should be able to refer you.  However, for any number of reasons, this may not be the case.  My advice is to seek an evaluation as soon as you can if you are reading this and are feeling worried about any of the information.  Find the Early Intervention service in your area!  It’s free, so why wait?  It’s only a win-win to get them in as soon as possible.  If they don’t qualify, your mind will be eased; if they do, your mind will be eased because they will be getting the services they need.  You should be able to ask your pediatrician where you can go or who you can call to get an evaluation. 

    For an easy printout click here: Speech and Language Milestones: Birth to three

  • So what’s the deal with gratitude anyway?

    So what’s the deal with gratitude anyway?

    This past week Dr. Maya Angelou passed away.  I was introduced to her in college with her poem “I know why the caged bird sings,” and many times on the Oprah Winfrey show.

    I have learned so much from so many teachers and inspirational women, but perhaps my greatest revelation in my life thus far is to be grateful.  With gratitude comes the fortitude to push forward despite any struggles I have been facing.  If I can look a difficult situation in the eye and decide to learn from it, rather than to be reduced by it, not only do I gain hope, but  I come out stronger, happier, and wiser because I have found something in which to be grateful.

    Albert Einstein once said, “In the middle of every difficulty lies opportunity.”

    That speaks to me.  If I can find opportunity in something difficult, I can also find gratitude in that positive.  A great metaphor for this is from Alphonse Karr when he said, “Some people grumble that roses have thorns, but I am grateful that thorns have roses.”

    Through life I have chosen to be inspired by people who not only refuse to be defeated by their difficulties, but who use them to their advantage. As Maya Angelou, a woman who was raped when she was seven and went on to be a mute for 5 years afterward said, “We may experience many defeats, but we must not be defeated by them.”

    I think so many people struggle with this.  There are numerous life coaches and self help books because people are craving happiness.
    I too struggled with this and I didn’t even realize.  My husband asked me one day, “Why is it that if there are multiple explanations for a given situation, or multiple outcomes for a given situation, that you always choose to believe the worst possible outcome will happen?”
    My response was I’d rather not get my hopes up that way I would never have to be disappointed.  As those words crossed my lips and I heard myself say them, I started to realize there might just be a better way to live.

    “Let gratitude be the pillow upon which you kneel to say our nightly prayer.”  Maya Angelou

    I do nightly prayers with my daughter Ashlynn, but last night I decided to add a quick section on gratitude.  When she asked me what gratitude means, I asked her, “what made you happy today?”  She had so many things!  She was grateful for paying (playing).  She was grateful for Baby Jace (her brother).  She was grateful for her gapes (grapes).  As she was sitting there telling me all of this, I really felt like I was onto something big.  If we can do this simple exercise when she’s young, perhaps it will be habit as she grows older.  To be honest, she already does it.  Despite her apraxia that brings so many defeats, she has never once been defeated.  Despite struggles that might frustrate others, she never loses hope.  She always seems happy and grateful for each new day and each new experience.  Oh, and a surprise twist I didn’t expect.  At the end she asked me, What you gafo fowa mama (What are you grateful for mama?).  Oh yeah, I guess I forgot kids will remember your example more than your words.

    “I’m grateful for you and Jace and daddy.”
    “I’m grateful for the walk we took today in the warm sun.”
    “I’m grateful for being grateful.”

  • They want to put her in a special classroom….what does that mean?

    They want to put her in a special classroom….what does that mean?

    I have a client who is usually brought in by her dad who drops her off and then waits in the truck.  Last night; however, he followed us back to the therapy room and asked to talk with me.
    This normally reserved, stoic man had fear and sadness in his eyes.  He told me had just seen his wife briefly and she was crying.  She had a meeting with the school and they told her their daughter is eligible for a special classroom.  I knew what this meant.  I knew she had been being re-evaluated in anticipation of her 6th birthday.  At that time, the district has to figure out a “label” for why she is having learning difficulties.  Aside from her global apraxia, I could only assume they found an intellectual disability as well.

    I was looking into his eyes.  This family trusts me.  They know I have Ashlynn, they know the struggles I have had and I know he thinks I understand.  Truth is, I’m just as terrified as him in that moment.  I was with him as a parent, not as the SLP I usually am.  I’ve been at IEP meetings where we recommend the “special classoom.”  We always try to be positive and explain to the parents that the smaller setting will allow them to work at their pace.  This is all true.  In fact, I am the SLP for two “special classrooms” during the day.  The kids are learning, they are happy, and we are all here to see them succeed.

    As a parent though, standing there with him, looking at his fear, sadness, trust, and just a glimmer of hope, my heart was breaking. I rambled and explained the process and the testing, and how a school usually gets to that decision.  A psychologist would have looked at her general cognitive abilities.  A score would be calculated and compared to national norms.  Scores below could indicate a cognitive disability; however, the social worker would be administering an adaptive/functioning assessment.  The parent and teacher would be interviewed and asked questions based on various adaptive skills she can do at home and at school.  If these came back below age expectations, a cognitive disability may be suspected.  However, in her case, the global apraxia would negatively affect the scores because a lot of the questions include daily living skills.  Finally, educational testing will look at her academic performance and compare it to her cognitive and adaptive scores.  If all the tests were low across the board, she most likely will be identified with a cognitive disability and be eligible for the special classroom.  If her cognitive and/or adaptive was high, but her educational scores are still low, she most likely will be labeled with a specific learning disability in the areas in which she struggles, and she may or may not be eligible for the special classroom.

    His eyes glazed over.  I stopped talking.  I told him that it doesn’t mean a thing.  It doesn’t mean a damn thing.  I’m not giving up on her, and neither are they, and neither is the school, and just because she needs it now doesn’t mean she’ll need it forever; and I really, truly, meant that.  She might have to work harder, but work she will, and work WE will.  I told him that Ashlynn started in a special classroom, but now she is in mainstream with a lot of support. 

    I thought of the Katy Perry song “Eye of the tiger.”  All of us parents have to have the eye of the tiger.  It’s hard, it’s tough, we will cry, but we will also smile.  There will be challenges, but there will be triumphs.
    “I got the eye of the tiger, a fighter, dancing through the fire, and I am a champion, and you’re gonna here me roar!”

    I love this definition of determination.  “The ability to see past challenges, rather than stare at them.”  I encourage you all to do the same!

  • Show and Share

    In the Fall of this year, Ashlynn’s teacher decided to do a weekly show and share with the kids.  I LOVED the idea and jumped at the opportunity to work closely with the school SLP to help Ashlynn be successful.  At first, she just stood up there and didn’t say anything, so I sent a list of questions each week that we had practiced and that Ashlynn only had to answer using 1-2 word responses.  Then the SLP and her would practice before she went up. 

    One week, the teacher did show and share early, and I didn’t send anything with her.  The teacher reported she dug out some post it note out of her backpack and said a few words about them and showed all the kids!  I realized then I didn’t have to send questions anymore and I was thrilled.  Then, I just got this report from the SLP:

    “she does enjoy getting up, is talking in the group,calling on friends, and labeling the things she brings and saying 1 or 2 things about object….all of those things I think are huge for her!”
    These things are absolutely HUGE for her.  I’m so excited!