SLP Mommy of Apraxia

Category: specific language impairment

  • Why you are the CEO and CFO in special needs parenting

    Why you are the CEO and CFO in special needs parenting

    A discussion in one of my groups the other day centered around the fact that parents of kids with special needs have to be the CEO on their child.  This extends beyond the idea that we are experts on our child.  The CEO, by definition, is in charge of making all management decisions.

    Parents of children with special needs have to be the CEO, and there is LOT to manage.

    Some days, it can feel unmanageable.  A CEO is typically responsible for the success of a company, which is no doubt stressful; but a parent feels they are responsible for the success of something even greater than a company……

    Parents feel they are responsible for the success of their child’s future.

    I know all parents feel this way about all of their children of course, including those with special needs.  However, the stakes are higher when you have a child with some sort of delay or disability.  A child with special needs is already starting life behind the eight ball.  A parent of a child with special needs feels intense responsibility to give them the best chance at a normal life, which is hard enough in this world without a disability!

    Parenting a child with special needs is a juggling act.

    When a parent has a kid with special needs, they spend their time not only at the pediatrician, but are bounced from specialist to specialist in many cases, just in an effort to get an actual diagnosis.  Kids with special needs in many cases have visited developmental pediatricians (different from regular pediatrician), neurologists, and psychologists. They have had blood taken, scans done, and more doctor visits to discuss results.  They have been poked, prodded, and examined more than the neuro-typical peer.  Their tiny bodies might have been subjected to sleep studies, sedation, and sometimes surgery.

    Therapy is always in the mix.  They may see occupational therapists, physical therapists, speech therapists, play therapists, behavior therapists, early interventionists, vision therapists and the list goes on.  Seeing a therapist always means another new evaluation, where this child who struggles anyway is subjected to tests and judgement calls as to their performance compared to typical peers.

    Obviously, there are only so many hours in a day and so a parent; the CEO if you will, has to choose  and prioritize many of the above listed appointments and even others not on this list.

    Unless you have been in this position, you have no idea how excrutiatingly difficult it is to decide which doctor or therapy your child needs most or more.

    Remember what I said before.  As a person making these decisions, the weight of your child’s future feels like it lay squarely on your shoulders.  Hopefully, you can get an appreciation of how big that weight becomes.

    Let’s not forget though, money.  All of these things cost money.  Insurance in many cases does not cover the brain scans, the MRI’s, the evaluations and the therapies.

    It causes a parent to become the CFO for their child as well.

    A CFO is responsible for the financial affairs.  Oh, and in the case of a parent with special needs, one doesn’t count on paying thousands of dollars out of their budget when they are starting a life with their partner, buying their home, and preparing for a new baby.  I had a supervisor tell me once at a private practice, no one can afford therapy, because no one counted on the huge hit to the budget these therapies, doctor appointments, and evaluations will cost your family.

    If you are lucky to get some sort of disability, Medicaid, or scholarship to help fund the cost; it’s not without another price.

    Time.

    All of these applications take an enormous amount of time.

    Parents need to gather required documentation, letters from insurance companies, doctors, evaluations, tax returns, and medical records to name a few.  A parent will spend hours filling out paperwork, spending time on the phone, and listening to hold music.  This time is well spent if a parent can get insurance to cover or get money to help with expenses; however, prioritizing time and finding time is not easy when we are shuffling our kids to doctor appointments and therapy appointments (see above).  This on top of finding time to put them in “typical” kid stuff like soccer or gymnastics and letting them go to birthdays like other kids do; in hopes that they can feel “normal” at least some of their childhood.

    If we are lucky, there are times we CEO parents find the perfect team.  We’ve got the diagnosis, the plan and team of therapists to treat it, and we see our child do the most amazing thing in the entire world……

    Make PROGRESS

    It’s probably the most beautiful gift in the entire world and in that moment; all the guilt, all the stress, all the worry, all the money, and all the time was 100% worth it.

     

  • Apraxia would have destroyed me

    Apraxia would have destroyed me

    I often think about what would have happened had it been me who had apraxia, dyspraxia, SPD, dysarthria, and a learning disability when I was young.  It’s pointless I know, but I was/am a perfectionist.  That’s not a good thing.  I learned early I was really good at spelling, reading and writing, but math I had to work for.  I won a math award in 3rd grade and I looked at the teacher, Mrs. Plummer,  like she was crazy.

    “I’m not good at math.  Give this to Keith or Jimmy.”  She maintained I was good at math, but I didn’t believe her and I never cared about that award.  I knew what I was good at, and it wasn’t something I had to work that hard to do well.

    I think about that because Ashlynn has to work at everything to do well.  There’s not like one thing that comes naturally to her….well actually social skills do, but she’s behind in that too only because of her other issues.  I had to work at math so it made me mad and I didn’t want to try, despite the fact I could do well.

    Her disability would have destroyed me.

    She has the best of my husband’s personality THANK GOD.  She doesn’t get embarrassed, she attacks everything, she’ll try anything, and she’ll never give up until she conquers it.  That’s a page straight up out of her daddy’s book.  She’s in a first grade performance Tuesday, and I was watching the practice with the art teacher.  I said the songs were hard for a kid with a speech problem (bear necessities, supercalifragilisticexpialidocious) and the art teacher smiled and said she loves Ashlynn because she just goes for it.  I smiled.  It’s true…she does.  She always has.  I can still cry thinking about her preschool observation where she couldn’t jump on the trampoline so she smiled and marched instead.  All the kids were encouraging her to jump like them….

    and she couldn’t bear walk so she hung across a teacher’s arm upside down to at least get a feel for the movement….still smiling.

    When she rode her tricycle and couldn’t pedal she never stopped trying……and not only trying, but smiling. Oh, and guess what.  She learned all these skills eventually, on her own time.  She walks, she runs, she jumps, she bear walks, she skips!  She puts me to shame.  She puts that third grade girl who decided math wasn’t her thing to shame.

    Well not anymore.  I’m not sure anyone becomes a parent to be inspired by their child, but she has inspired me and made me better.  There are things I do now I would have NEVER attempted.  Every time I’m scared or nervous, I think about Ashlynn.  One year on a camping trip everyone was cliff diving.  I was terrified as I stood on the cliff, but I thought of Ashylnn and I’m on video jumping and while I’m in the air you can hear me say “for Ashlynn.”

    Tonight we were watching “Zootopia” and a song came on “Try Everything.”  Ashlynn started clapping and dancing around the kitchen.  She always dances like no one is watching.  Isn’t that phrase people have to try and follow?  Well, Ashlynn just lives it.  It’s her essence.

    So I started listening to the lyrics and I’ll be damned if this isn’t that girl’s theme song.  I downloaded it immediately.  (I’m also admittedly a Shakira fan so I was hooked anyway).  We put it on outside and her AND Jace were going crazy.  It’s a great song.

    “I messed up tonight, I lost another fight
    I still mess up but I’ll just start again
    I keep falling down, I keep on hitting the ground
    I always get up now to see what’s next

    Birds don’t just fly, they fall down and get up
    Nobody learns without getting it wrong

    I won’t give up, no I won’t give in
    ‘Til I reach the end and then I’ll start again
    No, I won’t leave, I wanna try everything
    I wanna try even though I could fail
    I won’t give up, no I won’t give in
    ‘Til I reach the end and then I’ll start again
    No, I won’t leave, I wanna try everything
    I wanna try even though I could fail

    Look how far you’ve come, you filled your heart with love
    Baby, you’ve done enough, take a deep breath
    Don’t beat yourself up, don’t need to run so fast
    Sometimes we come last, but we did our best”

    So many times she has come in last but she gets back up and tries again. As a witness to this strength I have no choice but to do the same.  Look how far you’ve come, but don’t keep looking back.  Look up and I’ll walk next to you guys through anything and I’ll pick you up when you fall.

     

  • The Rise

    The Rise

    I have Ashlynn on a new game plan.  We had to take a break from her private speech because of unforseen financial issues in our life, but now we are back and better than ever.

    She’ll be seeing her awesome private SLP again on Tuesdays (who just happens to be my mentor, friend, and speech mom), and then Wednesdays we have insurance finally paying for 20 sessions, which is not to mention the two sessions she gets at school.

    Last night my husband took her in to the new SLP and she was given language testing.  Knowing I would never be satisfied with his summary, he prudently told the SLP to call me personally.  I had already emailed, called and left messages (oops), but hey.  I need to know this stuff.

    Well, tonight she called.  She was lovely actually.  Experienced.  Moms of kids with disabilities will totally feel me when I say, “I instantly had  a good feeling in my gut about her.”

    She told me she tested Ashlynn in language. I was anxious to hear the results.

    Before I get to that.  Let me set the stage really quick.  Two years ago, Ashlynn was tested at school as part of a re-eval.  The ONLY area, and I mean the ONLY area in the average range was her articulation skills, and even then, it was barely.   Language testing was no exception.  The one area kinda close to at least low average was a the receptive vocabulary test where she was to point to pictures depicting certain vocab words.  It was STILL slightly below the average range.

    I was devastated. Despite so much work at home, Ashlynn’s expressive and receptive language skills were tested to be significantly below the average range.  Beating apraxia at that point seemed pointless.  When Ashlynn actually spoke, most people could understand her now, but her language development was so delayed she still hadn’t really found her voice.  She spoke in scripts she had been taught. Sentence formulation consisted of scripts she’d practiced in therapy. If you have any idea about apraxia, then you know how jacked up it is to wish your child *just* had apraxia, and you might have a greater appreciation of just how damn freaking hard that sweet little girl has to work.

    BUT

    Fast forward to today.  The day I talked with this new SLP.  Ashlynn scored a standard score of 90 and corresponding percentile rank of 25 on the picture vocabulary test!!  DEAD average for receptive vocabulary skills.  My heart was leaping out of my chest.

    With a sympathetic and somber voice, she told me Ashlynn had just barely squeaked in the average range for a measure of relational vocabulary, which is telling how two things are alike.  My heart started singing and I think I took her aback.  I had to hear it again. Wait, she scored in the average range for what?? Tell me again.  Well, it’s the low average range, borderline really, but yes……

    I zoned out.  I checked out and started cheering.  OMG.  I work in the schools with her school SLP and this is what they have been working on!!  It’s working!!  She’s doing it!!  We are climbing!! We are RISING!!  We are OVERCOMING!!  I texted her school SLP.

    “Private speech gave Ashlynn the TOLD and she scored in the 25th percentile for picture vocab and 16th for relational. That’s ALL you.  Thank you for working with her.  I can’t believe it!”

    Her response was golden: “I believe it!  Ashlynn needs the gift of time to develop and mature.  Her brain is working hard right now but it will get easier and better!  Proud mama time!!”

    Um…people..cue the waterworks.

    It took me some time, but I finally found Ashlynn’s village.  I can’t help her overcome on my own, but I found a village who not only believes she can, but is helping her to do it.  There are so many working parts.  There is general ed, and special ed.  There is school speech and private speech. There is private OT and school OT.  There is physical therapy, extracurricular activities, and a legion of family members praying for her.

    Most importantly though, there is Ashlynn.  She is a fighter.  She doesn’t look like one, but she is.  That face is deceiving.  She has this understated determination, this quiet ferocity, and this unceasing resilience.

    It’s good to look back and see what we have conquered.  At times though, it’s too overwhelming to look up and see what’s left ahead.  So in this present moment, we will look a few steps in front of us and as my dad always says, “just keep your head down and working,” and one day, we will reach the top.

     

     

     

  • Baking with speech and language

    Baking with speech and language

    Parents are always looking for ways to incorporate speech and language activities at home.  Whether it is to stimulate a typically developing child’s vocabulary and language, or to help a speech or language delayed child; baking is great and fun way to work on speech and language.

    The first and most important rule before you start, is you have to accept the fact that your toddler will make a mess, and that is just part of the process, or um, fun.

    When I do baking or food activities with kids in school, they absolutely love it.  That’s the key. When kids have fun they are at their best learning.  Also, baking is a multi-sensory activity, meaning many sensory systems are activated.  When children are using multiple sensory systems, acquisition and retention of skills is more likely.  Baking with your kids inherently promotes:
    Vocabulary development
    Sequencing
    Following directions and comprehension
    Pragmatic language – the social piece of language

    Let me explain a little bit further.

    Vocabulary Development:  

    For the young child, words are learned best in context.  Certain authors refer to this as “event-based knowledge.”  Many of children’s first words are usually embedded within scripts that are part of their daily lives.  Examples could be: bottle, cookie, doggie, bath, etc.  These words are said to them frequently throughout the contexts of their daily lives.  Baking provides the same event-based knowledge experience, and exposes them to new vocabulary.

    Sequencing:  

    The ability to understand sequences and to sequence is an important skill.  Sequencing most simply refers to the order of things.  When kids get into school, sequencing is very important to understanding: patterns, math, a story etc.  Following a sequence of steps is inherent in baking and makes it the perfect activity for this skill.

    Following directions and Comprehension:

    These two things fall under receptive language skills; however, they are very important to the development of overall language skills.  Kids who are good at retaining and following directions have less difficulty in school since they are not devoting a lot of their cognitive load on simply understanding and remembering what they are supposed to do.  Baking is a fun and easy way to help your child practice these skills at home.

    Pragmatic Language:

    This is usually referring to the “social” element in language.  This involves the way language is used to communicate with others.

    With a little forethought, baking can also be a way to sneak in more direct speech language targets while working with your kid at home.

    Muffin Mondays and Waffle Wednesdays

    This summer I implemented Muffin Mondays and Waffle Wednesdays. Ashlynn is VERY interested in what day of the week it is, so I did this to also give her a framework of her week.
    Ashlynn’s current speech/language needs include: syntax (the form or structure of a sentence), and consonant blends (two consonants found together in a word: sp, st, sl, fl, bl, for example).

    It’s important to know your child’s goal, and then structure your baking around the goal.  Get creative, but it’s not as hard as it seems.  In Ashlynn’s case, I chose  the words: spoon, flour, stir.  For syntax, I had her ask me “Can I do it?” to work on her questions forms.

    Then each time we used a spoon I had her repeat “spoon.”  While she was mixing the batter, I would ask her what she was doing and cue her as needed to say the “st” blend in “stirring.”  Instead of using 1 cup of flour, I broke it up into four parts to give her more practice saying “flour” each time she poured in the flour.  For an extra bonus, she had to put “stir flour” together in a simple phrase.  I would hold the spoon until she said the desired words, and then I would give her the spoon back when she was successful!  She loved it.

    If your child isn’t yet talking as much as Ashlynn, hum the ‘m’ sound while you mix the batter or if your child isn’t great at imitating yet, just have him/her make any vocalization to request an item.  If they can’t yet imitate even a vocalization, imitate any spontaneous sounds they make to provide an opportunity for vocal play. If they aren’t really vocalizing yet, don’t get discouraged!  Practice turn taking and reciprocal play.  They pour then you pour.  You stir then they stir.

    With other clients who needed a final stop, I might have chosen the word “dump” and then every
    time we pour in an ingredient, we work on the word “dump.”

    Really, the possibilities are endless!

    In addition, you can also tell your SLP that you incorporated some great “distributed” practice throughout your child’s day.  In motor learning approaches to therapy, mass practice refers to the production of a large number of repetitions of a single target(what you should be seeing in therapy) and distributed practice refers to hitting targets with a greater amount of time between trials or sessions.  However, distributed practice is very important for stabilization and generalization!  Parents are the greatest asset when it comes to carryover, because you are in a better position to afford the child numerous opportunities for distributed practice!  In addition, you can do it in ways that are fun and multi-sensory in the child’s natural environment.