Category: developmental coordination disorder

  • Thank you for choosing me to be your mom

    Thank you for choosing me to be your mom

    It’s Halloween, 2018.  You are a freshly turned nine-year old.  You are 9 years old. My mind immediately repeats a phrase from my dad,

    “Mr. Baskall, here’s your little baby girl.”

    I remember I would roll my eyes and scoff at him.

    “Ugh dad!” I would lament as he looked at me with eyes brimming with pride.

    I don’t have any words to describe or memorialize your entrance into this world, but I have your pictures.

    Halloween, 2009 was the most magical holiday that I have ever experienced.  It was the first holiday I ever experienced as a mom.  I was a mom.

    I was a mom!!

    On Halloween’s prior, the entire holiday was full of self-entitlement, but the Halloween of 2009 was full of something completely different.  I had given life to the most beautiful angel.

    My normally highlighted hair was brown, which is actually my natural color.  I had diligently not dyed my hair while pregnant with Ashlynn to ensure no harmful chemicals crossed my scalp, into my bloodstream, crossing the placenta and then hurting my baby.  I remember taking every precaution to ensure I had the healthiest baby my body could possibly produce.  An avid craft beer drinker from Colorado, I would refuse to even take a sip while pregnant.  I ate my lunch meat warm to avoid lysteria and eliminated all caffeine so my developing fetus was never exposed to any stimulant in utero.  I wore an industrial style mask when I painted her baby room to ensure she was exposed to no harmful fumes.

    So confident was I in ensuring I had followed every caution and recommendation, the thought never even once crossed my mind I would have a child with any sort of developmental delay.

    Life sure answered back with a big middle finger and boisterous laugh at that one.

    Every Halloween though, I become nostalgic.  I remember that new mom holding that tiny baby in her cute onesie with the pumpkin bum and beaming with pride.  I remember my husband dutifully reporting to work each day, but taking time to hold, hug, kiss and fawn over the tiny human we had somehow created together.

    I remember my heart being so full I thought it could actually burst from the amount of love that it was trying to contain inside.  Every Halloween, ironically, reminds me just what a GIFT life actually is. Yes, this day of the dead reminds me of how lucky any of us are to actually live.  Halloween always reminds me of how blessed I was to have a baby.

    I had no idea then, all the challenges life had in store for Ashlynn.  When I look at that picture, I see the instant connection a mother has to her child.  Our eyes are fixated on each other, and I know she trusted me to be the person to never give up on her.  I remember what an honor it is that Ashlynn chose me to be her mom, and I renew my commitment to never, ever, EVER, give up on her.

    I love you Ashlynn Kay.  Thank you for choosing me to be your mom.  I hope I never let you down.

     

  • Finding our umbrella.  The last piece of the puzzle.

    Finding our umbrella. The last piece of the puzzle.

    In my opinion, Ashlynn’s birth history was significant.

    No, she wasn’t born premature.  No, there wasn’t a dramatic rush to the ER.  However, I was failing to dilate or efface and the labor was taking so long that vaginal fetal electrodes were placed on her head.  In addition, every contraction brought concern to the fetal hear monitor.  My OB recommended at least three times that I get a C-section; but hopped up on drugs and determined to deliver my baby naturally, I didn’t read between the lines.

    When Ashlynn was three months old I started to become concerned about her toes.

    My friend affectionately pointed out her “ballerina toes,” but they were cause for concern.  Her feet were always in a pointed flexed position, otherwise known as “plantar flexion.”  If I tried to stretch her feet to what is known as a “dorsal flexion,” I was unsuccessful.

    At her 6 month well baby check I brought my concerns to the pediatrician. She offered two possible solutions.  I could get a referral to neurology, or I could stretch our her tight heel cords each night and at the next well-baby visit we could re-evaluate.  I chose the latter.

    I was an SLP working in the severe needs classrooms before Ashlynn was born.  I co-treated with PT’s and watched them massage and stretch out kids with cerebral palsy for at least two years.  I tried to replicate the same motions and massages in Ashlynn, and meticulously stretched her out every night in the bathtub for 6 months.  At her next well baby check, her heel cords were loose and we could easily get her in a dorsal flexion.  A referral to neurology no longer seemed necessary.

    Ashlynn continued though to be delayed in every milestone.  I was convinced it was Cerebral Palsy (CP). I worked with her every night doing a speech therapy approach called “language stimulation.”  I was exhausted.  Physically and emotionally run down from working each day, but I would look at my daughter’s smiling face and pull reserves out from the depths because she was by far my most important client.

    At around a year I took her to a PT I worked with who saw children with CP everyday.

    “I think she’s fine, Laura,” she said to me. She had her crawl, stand, and try to walk.  I was relieved, but still skeptical.  When Ashlynn started to pull up on furniture I noticed she would stand on her toes.  I immediately and diligently would relax her calves or physically manipulate her legs to stand flat-footed.  When she finally went to walk (very late at 19 months), we didn’t have a problem with toe walking.  I felt relieved at the time; but little did I know I had successfully suppressed all the soft signs of CP through my training and experience with children who had severe needs.

    I’ll never forget her Child Find Evaluation shortly before she was three.

    I had been working with her every night on speech, and the progress was less than amazing.  I wanted to turn back a million times, but knew I had to take her to this evaluation to get her qualified for extra services. The diagnosis of apraxia smacked me hard in the face.  Though I instantly knew it was true, I was mortified I had not thought of it until that moment.

    I grieved.

    I had a difficult time looking myself in the mirror after that.  All questions of CP had been ruled out and I had missed a diagnosis of apraxia in my own child.  I was beyond disappointed and angry in myself. I struggled to look at myself in the mirror.  My confidence was shattered and I questioned as to whether I was really helping children or not.  I didn’t know it at the time, but looking back I think I was deeply depressed.  I decided during that time that I had to do something with this situation.  I could sit in sorrow, guilt and regret; or I could turn all this pain into a purpose.

    I started my blog and my mission to specialize in apraxia.

    During this time period I was PROMPT trained, Apraxia-Kids trained, and watched the Kaufman K-SLP method on video.  I became so fanatical about apraxia that I earned an award from ASHA for obtaining a crazy amount of continuing education in a short period of time.  During this time, Ashlynn improved and I finally started to be able to look at myself in the mirror again.

    Ashlynn went on to receive additional diagnoses of: dyspraxia, ADHD. SPD, and dysarthria at this time through various professionals.  I had accepted that Ashlynn seemed to have “global apraxia,” which is a term for kids who seem to be globally impacted by motor planning issues.

    I sought expertise from neurologists who ordered MRI’s and genetics but came up empty.   I knew from an article I had read once that in some circles, global apraxia was considered a type of CP; but no one would believe me.  I had settled on global apraxia, aka apraxia and dyspraxia until….

    At the age of 8, Ashlynn toes started curling forward.

    I had noticed it, but hadn’t done anything about it until her Grandma told me that she noticed it and Ashlynn told her they hurt.  Concerned I took her to her pediatrician who was completely stumped.  She did refer to me the orthopedic department at Children’s and I felt I was on another wild goose chase to figure out why Ashlynn’s feet were acting like this.  That was until a mother to a client I have with CP told me that toe curling is common is kids who have CP during the time of a growth spurt.  She referred me to a specific doctor at Children’s Hospital Denver called a “physiatrist.”

    I scheduled the appointment and arrived early with Ashlynn.  Trying to shake off nerves we played on snap chat and laughed.

    d.

    I was so proud of her pucker in the second picture because puckering has been a task that has been traditionally something that is difficult for her.  Finally we were called back and ushered to our examination room.

    The doctor and resident came in skeptical.

    They asked me why I was there and when I mentioned CP they looked at Ashlynn and seemed pretty dismissive at first.  CP?  Why on Earth did I think this girl sitting before them had CP?  I soaked in her skepticism and it killed me. Great.  Here we go again.  Another person who doesn’t believe me.  She had Ashlynn walk down the hallway away from us.  Ashlynn was scared so I walked with her.  The next task was to run and the doctor instructed Ashlynn to run by herself and explained she needed me to stay behind.  As Ashlynn ran ahead this woman began a running commentary of medical jargon I was desperately trying to keep up with.  She was talking to both me and her resident.

    “Notice the Pie Pan arm hold as she runs.”

    I looked at Ashynn’s peculiar arm and finger posture.

    “Sweetie will you skip now?”

    Ashlynn skipped happily down the hallway and Pam began her expert observations,

    “Notice how that pie pan hold switched sides.”

    Ashlynn returned.

    The rest of the evaluation went much the same.  I watched on in disbelief.  Somewhat invested but still skeptical, they had Ashlynn take off her socks and shoes and repeat the exam.  As she ran down the hallway, what had been no evidence of toe walking with shoes, revealed a slight toe walk without shoes.  I was in awe of Pam’s expertise and knowledge.  Her observations and running commentary were impressive.

    Back in the exam room the revelations were revealed.

    They tested all of her reflexes and Pam remarked how all of her reflexes were “brisk,” which was code for “not normal,” and observed that all of Ashlynn’s primitive or baby reflexes were still present.  When I questioned her she explained that children with CP never outgrow those early reflexes and will retain them into adulthood.  I was fascinated.  I had OT reports from multiple places that described how Ashlynn hadn’t lost her primitive reflexes, but I didn’t realize it was due to a possibility of her having CP.

    I knew from my apraxia blog groups that some kids with global apraxia received a dx of “ataxic cerebral palsy” early on.  This doctor had Ashlynn touch her own nose and then touch the doctor’s finger.  Ashlynn did well with this.  The doctor immediately ruled out ataxic CP.  I asked her if a child could improve on that task with OT (since Ashlynn used to be bad at that but has had therapy) and she shook her head and said there was no way Ashlynn had ataxic CP.

    Ok. I wasn’t even offended.  My mommy gut was telling me this woman knew what she was talking about and I was in the exact spot I needed to be.

    The next test, from a lay person’s view, seemed to be the most definitive diagnostic marker of the evaluation.  It was a “clonus test” that is done at the foot and ankle level.  I could google it and come up with this amazing medical definition, but I want to report this as a mom.  As they were testing reflexes, one reflex test they did put Ashlynn right back into those ballerina toes I saw as a baby.  They then tried to push up on her foot so she could achieve a dorsal flexion, and her foot started pulsing.  Apparently, pulses beyond 2-5 are considered abnormal and Ashlynn was at an 8 or above.  It was so significant, they couldn’t get her out of it without changing her body position completely.

    It was after this the treating MD told me that based on Ashlynn’s pie pan hand posture when running and clonus in the ankles, she exhibited symptoms consistent with dystonic cerebral palsy.

    I gasped.

    It wasn’t a gasp of pain or sadness.  It was…relief.  I couldn’t believe someone listened to me.  I couldn’t believe that after almost 9 years of knowing this was what Ashlynn had, it was only now being diagnosed.  I beat myself up for years missing apraxia.  It was so bad, it was what made me specialize in it.  I couldn’t look at myself in the mirror.  It was a big blow to my self esteem as a professional.  I thought I was a good SLP and then I had missed apraxia and CP was ruled out and I felt incompetent.  The guilt was overwhelming.  I did everything in my power to make up for the error.  I specialized in apraxia, received awards related to apraxia, and helped my daughter every way I knew how.

    To find out now that I had been right all along was a feeling I can’t put into words.  It had come full circle.  I actually did know my stuff  back then, but this experience with Ashlynn shot me to a place with apraxia expertise I could have never imagined.

    I was talking with a client I had who brought their daughter with diagnosed CP into see me for a differential dx over a year ago, and was telling her the story. Our stories our reversed.  Her daughter immediately received a CP dx, but no one believe her daughter had apraxia until she came to me to get a differential dx.  She said exactly to me what I said to that doctor.

    “So you believe me??  I’m not crazy?  Oh my gosh!! Oh my gosh!!!  I freaking knew it.”

    She went on to tell me this day that she was thankful that I didn’t know Ashlynn had this rare presentation of CP, because I probably would have went all in on the CP awareness train.  Instead, I went all in on apraxia and because of it; her daughter got the right dx and subsequent treatment she needed to find her voice.

    I had to agree that she was right.

    In the end, life has been a journey with my Ashlynn.  However, I actually and finally feel like all the pieces to her “puzzle” have been found.  A good friend said it best when she told me,

    “You found your umbrella.”

    I didn’t cry at any point during the evaluation or dx.  After we left I called my husband, mom, and mother in law and explained the findings over the phone with Ashlynn in the back seat. When I hung up my last phone call I heard this little voice ask,

    “Mama?  What do I have?”

    I didn’t expect to tear up when I answered her my voice cracked and I said, “Baby, you have cerebral palsy, or CP.  It doesn’t change who you are at all. It’s just something you have, like apraxia.”

    “That says Exit, Mississippi” she said right after, reading the freeway exit sign to our house; and in that moment, I knew everything was going to be okay.

     

     

  • Apraxia, dyspraxia, dysarthria and the link that tied them all together.

    Apraxia, dyspraxia, dysarthria and the link that tied them all together.

    Those familiar with my story know that I missed apraxia in Ashlynn because I was convinced she had CP (cerebral palsy).  She had a significant birth history and had to be pulled out via C-section and all of her motor milestones were late.

    Tummy time was a nightmare.  I was always so stressed about it because she literally seemed like she was suffocating and couldn’t pull herself up for air.  She would cry.  As much as I tried to prevent it she developed a flat head.  I remember asking the pediatrician if she needed a helmet but was told no. From 3-6 months she had developed a case of extremely pointy toes.  My friend affectionately referred to them as ballerina toes, but they were anything but cute.  I couldn’t get them flexed at all.  I kept thinking they just looked “spastic” to me; which is a term to describe very tight muscles in individuals with CP.

    When I brought it up to the pediatrician she said we could go to neurology or maybe I could just massage her calves every night in the bathtub and at her next baby well visit we would evaluate.  I decided to do that and if it didn’t work I would go to neurology.  I worked as a speech/language pathologist before she was born in severe needs classrooms and worked alongside physical therapists.  I did to Ashlynn everything I would see them do to our students.  By her next well baby visit, her feet could flex and she no longer had a standing ballerina toe pose.  There didn’t seem a need for neurology at that point.

    After that the rest is really history.  I received her diagnosis of apraxia right before her 3rd birthday, and then subsequently got her dx of dyspraxia, SPD, and ADHD through various OT places we went for therapy.  From that time on, I’ve accepted this was her diagnoses.

    Last year I decided I wanted to make sure I had checked all the boxes and got a referral to neurology.  It was not a good appointment.  You can read about here. They completely dismissed any chance of CP, but they did write orders for an MRI and genetics and those were two boxes I wanted to check off.  That all turned up empty.  They dismissed any neurological soft signs I had seen such as her pointy toes, flat head, and choking as a baby.  They actually dismissed dyspraxia and apraxia as well but that’s another story.  I let it go again because these are experts after all.

    That was until, a new development happened.  Ashlynn’s toes are curling forward to the point you can’t see her toenails because it looks like she is standing on them.  I took her back to the pediatrician who literally did not know who to refer me to.  She sighed a deep sigh and took a good 20-30 seconds to speak.  In the end, we decided on the orthopedic department at children’s, guessing it has something to do with her dyspraxia causing balance and coordination issues.

    As fate would have it, I’m telling Ashlynn’s symptoms to the mom of a client who has severe CP and dysarthria.  After I told her about our dr appointment and referral, she relayed to me that curling toes is common in CP, or any joint abnormalities for that matter, especially around the time of a growth spurt.

    My heart sunk.

    There is this feeling every mom can relate to.  It is this gut feeling that tells you when something is right and when something is wrong in your child.   At that moment, I immediately felt it. I knew that what I had thought all along was right.  Ashlynn has CP, and this woman standing before me knew of the person I should go see.

    She recommended I go to the rehab clinic at Children’s Hospital Denver who has a team of doctors who deal with this stuff.  I called this place in lieu of the orthopedic department.  The intake person went from being skeptical and asking me why I didn’t have a doctor referral to enthusiatically affirming she could get us in right away after I explained all of Ashlynn’s symptoms.  She then told me that me once Ashlynn was diagnosed, they can recommend the best plan of treatment.  When I got off the phone my mind was reeling.  What had I told that person that made their attitude change from skeptic to a certain dx?  I wasn’t sure, but at least I knew I was now on the right track to getting an accurate and complete dx for my daughter.

    I’m a firm believer that coincidences are put in our path for a reason.  It wasn’t a “coincidence” this client found me.  She had in fact been referred to me by Dr. Ruth Stoeckel, who had been my mentor at the Apraxia-Kids bootcamp. I was about to experience another coincidence that would light the path to the answers I was seeking.

    That same week I found out Ashlynn’s OT was leaving and a new OT would be shadowing her for the next two sessions.  When I went in, I told them both about Ashlynn’s new doctor appointment and that it was because I had always suspected CP.  The minute I said CP they both turned to each other, smiled, and then nodded in recognition.

    I’m sure when they looked back at me I looked angry.  Why on Earth would they suspect something like CP and not tell me?  I quickly had my answer.  The new OT had observed Ashlynn the week prior and after reading her chart suspected a mixed presentation of low and high tone.  She suspected it, because she herself had CP as well.

    My mouth probably dropped open.

    That was a lot to process.  For someone like me who believes coincidences are God’s way of telling us we are on the right path, this path was lit up like a Christmas tree and blinking.  I knew my initial hunches way back when Ashlynn was a baby were about to be finally confirmed, almost 9 years later.  I didn’t know what to feel.

     

     

  • 1st Day of 3rd Grade

    1st Day of 3rd Grade

    My dearest Ashlynn,

    Your courage amazes me daily.  It inspires me and pushes me beyond any limit real or imagined.  Today was your first day of 3rd grade.  You have been waiting for this day since the last day of 2nd grade.  Actually, quite possibly since the first day of 2nd grade when you told me,“After 2nd grade you I will be in 3rd grade!”

    I emphatically responded,

    “We need to make it through 2nd grade first!”

    We bought you a new backpack, new outfit, new shoes, and you got a new haircut.  Two out of the four items went as planned.  The backpack and new shoes went off without a hitch.  The other two? Well Ashlynn, it’s just not our style to have a few hiccups is it?

    Getting a new haircut is always an adventure.  Your dyspraxia, ADHD, SPD, and receptive language issues make following specific commands somewhat challenging don’t they?  I stepped in to help guide your head where it needed to go so the stylist would stop reminding you of how hard it was for you to follow those simple commands.

    Then came the new outfit.  We picked it out together!  I didn’t think we needed to try it on because I know what size you are and I was sure it would fit.  Last night we hung it up on your dresser anticipating the first day of school! However, this morning when you went to put it on you were more confused than ever.  I came into help and realized I had bought you a romper! That flowey material fooled both of us didn’t it!!  I could have sworn it was a dress.  A romper though?  Yeah, not a friend to the girl who has dyspraxia.  I apologized and offered other options in your closet.  We chose a pretty sun dress you hadn’t worn much, but I still felt bad.

    You took it in stride though!

    All morning you were jumping up an down and excited to go to school and I marveled at you.  School is so hard for you.  Last year you came home with bloodied shirts or completely different shirts because you had so thoroughly stained yours from picking your finger nails.  Almost every assignment you completed you struggled in, and many times you ate and played alone.  How on Earth were you excited to go back to that?

    Three days before we saw an ex client of mine who is your age.  Her apraxia is resolved and she has residual learning disabilities.  She told us how she didn’t want to go back to school because she was bullied and you sat there un-phased.   I thought to myself if I were in either of your shoes I would feel like my client; yet I was so grateful you are you.

    You have a strength and internal resolve I am working towards.  You have courage and resiliency I have yet to conquer.  Where my instinct is to run back your instinct is to jump forward.

    I am inspired by you.  I am always going to be here by your side.  I’m going to love you, but I’m going to push you.  I’m going to do everything in my power to help you obtain the tools you need in order to live life on your terms.

    It took me many years to believe and even more to practice this simple advice:

    Heck it takes grown men and women to follow this advice, and let’s face it.  Some die before they ever follow this advice at all. YOU embody this.  YOU are a living testament to this.

    Pursue it all Ashlynn!  I’ve always got your back and I’m your biggest fan!

    Love,

    Mommy

  • This school year, teach your children to be kind.

    This school year, teach your children to be kind.

    Fresh backpack, lunchbox, shoes and school outfit are waiting tomorrow for my child’s first day of school.  There is an excitement in the air as we bought school supplies and met her teacher last week.  She picked out her name tag like the other kids and picked her seat.  She flashed a big smile to her new teacher and chattered endlessly about school starting again and how she was excited to go back and to learn.  We went and got a new haircut and she told the stylist how she was starting third grade.

    Tomorrow I will take the historic first day of school picture. I will probably proudly post it on all of my social media accounts.  I will most likely scroll back and look at it a couple of times and wonder where my baby has gone.  I will marvel at how this school aged girl with long legs is standing on my front porch.

    That is where the similarities will end.

    As many parents cheer and are relieved to get back to a routine, I’m left with only nerves and trepidation.  The summers in my house are happy.  My daughter is a child who can explore the outdoors and experience life as a carefree and curious kid.  She plays with neighbor children until bedtime and explores campgrounds on the weekend.  She makes mud pies and collects dirt under her fingernails that need to be clipped and scrubbed frequently.

    Unfortunately school brings other stories.  The child who played carefree until bedtime with neighbors is the same child who is frequently seen sitting with her teacher’s aid (TA) at lunch and playing by herself on the playground.  The fingernails that grew long and collected dirt over the summer are replaced with widdled down nubs during school that are bit, picked and chewed so much that her shirts frequently come home bloodied or on some really bad days, have to be changed completely.

    The girl who chatted endlessly to family and friends is the same girl who is quiet and reserved at school, frequently clamming up when put on the spot or asked a direct question.

    The child who could explore during the summer and jump from varying activities is the same child who frequently loses focus and can’t concentrate on subjects at school.

    My child has invisible learning disabilities.

    Many of them.

    However underneath them, she is still just a kid like your son or your daughter.  She is curious.  She is friendly.  She wants friends.  She craves connections.  She’s excited to learn.

    This year as you talk to you children about their new teacher, new classroom, and new adventures, I beg you to talk to your kids about being kind.  I beg you to explain to your child that children with disabilities are just like them, but it might take a little longer to understand or get to know them.  If nothing else though, please just teach your children to be kind.  Maybe ask about something they did that was kind alongside your questions of who they played with or what they learned.

    Our kids will thank you for it!

    Sincerely,

    A proud mama to a child with hidden disabilities

  • Executive functioning home intervention

    Executive functioning home intervention

    Let’s talk executive functioning.  If you follow my facebook page SLPMommyofApraxia (click here), you already know we are making our house an executive functioning friendly zone and you might have read a prior post I wrote a  “What is Executive Functioning, and Why Do You Need to Know?”

    What does an executive functioning friendly zone mean exactly?  I decided to put all of it into a post so you can see and hopefully help others who may have children with similar issues.

    Before I begin, I just want to say this:

    Children with learning differences, many, many, MANY times benefit from the use of visuals.  There have a been a handful of cases in my career where visual aids actually confused the student more; but for the most part, visual aids benefit everyone.  This visual from northstarpaths really explains why:

    Executive functioning (EF) deficits are a common comorbidity with a variety of conditions including: ADHD, OCD, ID and others just to name a few.

    Visuals are AMAZINGLY helpful for children with EF dysfunction.   The problem is, most teaching involves auditory input.  The teacher (or parent) talks, children listen, and learning takes place.  For kids like my daughter, who have a language processing impairment, the teacher (or parent)  talking is basically the equivalent to the teacher in the Peanuts comic series.  All the children hear are “wah wah, wah wah wah wah.”

    Visuals bridge the gap.  I couldn’t say it better than Benjamin Franklin, who himself had a learning disability when he said,

    Aside from just visuals though, kids with EF dysfunction benefit from organization and time management strategies.  The following is what we currently have implemented in my home.

    Morning Routine

    The most recent example from my personal experience involved the steps to getting ready for school.  If I told Ashlynn what to do, she immediately forgot or I had to go through step by step and tell her, which is not promoting independence.  With the help of her SPED teacher, we made this visual schedule and she was successfully completing all of her steps without our help in about two weeks.

    Restroom steps

    We decided to make a visual schedule for completing bathroom steps.  Let me tell you that we have been working on remembering these for AT LEAST a year.  Last year in 2017, I sent her to Adam’s Camp and remember telling the therapists she can say all the steps but still is not consistent.  After Adam’s Camp she came home being able to sing them as well, and still, we could not get consistency.   So we made a visual schedule a little different than her morning schedule and it looked like this.

    This was NOT successful.  It probably has too many steps and it doesn’t have the nice left to right motion the morning schedule this, so I modified and made this.

     

    I’d be lying if I said this was a complete success right off the bat, but it has worked better than any other strategy to date and now that the summer has hit, we have made sure she has to go back and complete her steps every single time.

    Cleaning her room

    The next step was to tackle completing a basic chore like cleaning her room.  I can’t even begin to explain the difficulty with this.  What I do know, is that many adults with ADHD continue to struggle with disorganization into adulthood.  It behooves us now to help our kids develop strategies that are going to serve them well throughout their lives.

    The first step is to make sure everything has a place.  Classrooms are set up this way for a reason.  There is a specific space for each and every item that is used or played with in a classroom.  If not, things will inevitibely end up in a pile of clutter.  Ashlynn and I went through her room and designated certain drawers and bins for different things.  Everything has a spot.  There is a bookshelf, a lego bin, a writing utencil drawer, a baby clothes bin, you get the idea.

    I then created a visual schedule of each piece of furniture that she could check off as she went about her cleaning routine.

    I know it’s hard to read, but basically each furniture item is listed on the left, with a picture representation on the right of what it looks like done.  The picture on the bottom is a grand finale picture of what the entire room should look like clean after completing all of the steps for one last check.

    Next up was to have bigger picture velcroed to all of the furniture items so she could see as she was cleaning them what they are supposed to look like.  I know it seems redundant, but seriously if you have a child who struggles this, then you will relate when I say that a dresser with closed drawers looks fine with clothes hanging out of it to her.  Same with a picked up hamper.  I even have a picture showing what the closet should like closed and no that doesn’t mean it is closed until it hits the piles of crap.  It means actually closed and looking neat.

     

     

     

     

     

     

     

    I have to add that these helped, but still had to be taught.  In fact, it’s still a work in progress.  Some nights, I am so frustrated and just want to pull my hair my out.  I’m only human after all.  I do though, in those times, try and decompress and remind myself this is not a *fix* but a lesson.  Ashlynn doesn’t learn like other kids and that’s okay.  I have to realize though that all of this will pay off in the long run, and when we start early kids have the best outcomes.

    Homework

    Oh man don’t we hear horror stories about homework from parents of kids with varying learning differences.  Teachers make homework sound so easy.  Ten minutes for every grade you are in, so a first grader shouldn’t be more than 10 minutes a night.

    Say….what???  That assignment just took my kid an hour….and then when we went to second grade, that so called 20 minute assignment just took upwards off and on of two HOURS?  Minutes?  What?

    Know that homework can always be modified, but there are strategies that can be put in place to help with this too. Number one is to just start with a place that is going to make them successful for learning.  If you are like me, my first baby is the one with learning differences so instead of preparing for the ultimate learning environment, we were more focused on transitioning my son from a crib to a toddler bed and spent our money on that.  Needless to say, our kitchen table became her homework place.  Yes, the place that she eats and the chair in which she sits that her feet don’t touch on the ground yet is what we thought would be the perfect location for her to sit down and do that quick assignment in 10 minutes.  I should mention too it’s a thoroughfare in my house, so my kid with ADHD was also constantly distracted by the events taking place all around her.  Can we talk about set up to fail???

    I redid her room and created a homework corner.  I bought her a new desk in which she sat at a 90 degree angle, perpendicular to the floor, and decked it out with strategies from executive functioning queen Sarah Ward from the website Cognitive Connections.

    New desk with feet on the floor

    As you can see, I have her own desk, in a corner of her own room, that is quiet and in which her feet touch the floor!

    Get ready, do, done boards

    The colored board above the desk are suggestions from the cognitive connections website.  In the yellow, we write everything we need to get ready.  It might be as simple as a pencil and it might be more complicated if doing a project.  (To modify for non-readers, you can tape or velcro pictures that you need.).

    The green stands for “doing.” These are the steps you need to do to reach the finished project.  The finished project then is the red board and reflects what the assignment looks like when it is finished.  For lower level, you can put a picture of what a completed assignment looks like, or for readers you can simply write it.  Sarah Ward also recommends to “start with the end in mind,” meaning kid with EF deficits benefit from knowing what the end is supposed to look like and then working backwards. For a more elaborate description, go see Sarah Ward talk.  She’s amazing.

    Calendar

    We have tried a few different things to help Ashlynn learn time, and I’m not just talking time management.  Ashlynn has had a lot of difficulty learning the seasons, days of the weeks, the months, and understanding the difference between yesterday, today, tomorrow, last week, next week etc.

    I decided to buy this peeling dry erase calendar at target.  It’s huge and sits right by her desk.  Every month, she helps me write the month and the days.  We then go through and write her therapy/activity schedule and color code them.  Each activity is written in a different color.  The weekends are shaded on red since she has a difficult time understanding that Saturday and Sunday are one unit (the weekend) when they are split up on a normal calendar.  We then marked an X for each day that had passed and talked about yesterday and tomorrow.  This calendar has been AMAZING.  I might be so bold as to say it almost helped her understand days of the week right away.

    Her school though also hit this hard visually and created the following corner in the SPED room just for her.

    This picture is also hard to see, but basically you see the basic calendar color coded by day in the middle.  To the left, each day of the week is color coded.  On the file cabinet on the right, the months are placed and she has to pick out the right month each day for added repetition.  The days are in the second bag, and there are tiles for the season and then arrows to talk about the concepts yesterday and tomorrow.  A normal calendar was provided as a reference to keep track of how her modified calendar related to a typical calendar.

    Timer

    Last to come is the timer I used for all of these tasks!  Time management is another HUGE skill that is difficult for those with EF deficits.

    The timer is from the autism community store here in Denver, but I’m sure you can find them on Amazon or other places.  This timer is amazing!!  The colors stand for different things similar to a stoplight.  Green means go, yellow means caution you are nearing the end, and red means you need to be done or stop NOW. What is best, is that each color is completely customizable by time.  For her morning routine, we usually set it for 3-3-3.  For homework, it might be  2-20-2.  Did I mention it also comes with sound?  So that means every color it changes to also has a sound to go with it, aka, an auditory cue.

    The impact

    I have to admit, there were times that as even I were making all of these materials and buying all these things that I wondered will this really make a difference?  Was all this work really worth it?? My answer came from Ashlynn.  As I was making these visuals, she probably thanked me more than 10 times.  She knows how she learns.  She was just waiting on me to help her.

    Laura Smith is a mom to two children, one of which who has multiple learning differences.  She is also an SLP (speech/language pathologist) specializing in CAS (Childhood Apraxia of Speech), a passion that was fueled by her daughter’s dx in 2012.  To learn more, visit slpmommyofapraxia.