SLP Mommy of Apraxia

Category: special needs

  • 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.

     

     

  • Apraxia as a symptom to a bigger picture

    Apraxia as a symptom to a bigger picture

    When I started out on this journey, having my daughter receive the diagnosis of Childhood Apraxia of Speech was devastating.  Unlike other parents who might have needed it explained or who turned to google and realized it is a lifelong neurological disorder, being an SLP I already knew that.  My mind flashed to two boys I treated prior to Ashlynn when I was a school SLP, who both entered Kindergarten nonverbal and I was terrified.

    After I threw myself a pity party, I picked myself up determined to attack the beast named apraxia.  At the time as we were going through it, I did not fully grasp as I do now, the fact that most kids with apraxia will not only hold that one label.  I did not fully realize that most kids with apraxia, a neurological speech disorder, will also have co-morbid neurological disorders as well.

    As a professional SLP specializing in the field, I have a current private practice caseload of around 35 kids.  There is not one who doesn’t have another co-morbid condition.  Friends, I have to repeat that because it is important.  There is not ONE who only has apraxia.

    I feel now like this is an important topic to discuss because I don’t know about other parents, but for me I would have wanted to know up front that a diagnosis of CAS meant I was going to be dealing with more than CAS for the long haul.

    Why?  What does it matter?  You take each diagnosis day by day right?

    I struggle with this.  Part of me agrees but then part of me just wishes I had known the statistics were as high as they were for the chances that my daughter would have dyslexia, or ADHD, or SPD.  I say this because honestly, had I just known up front all of that was a possibility, I could have:
    1. Been more vigilant and more proactive about potential comorbidities
    2. Not been so devastated each time a new one popped up.

    In the post on ADHD I wrote:

    I know it’s a little too young to diagnose ADD, but I hope to God she doesn’t have that too.  She doesn’t deserve this..any of this.

    In the post on Dyslexia I wrote:

    In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”  In that moment, that article told me, “Laura, this is dyslexia.”  I started to cry at the end of that article.  Damnit.  I missed it again.  I missed another OBVIOUS dx in my OWN daughter.  Why does this keep happening??  What good was all my training and experience when I’m not applying it to my OWN baby??

    Ashlynn has a slew of other diagnoses as well, and EACH time I went through this process AGAIN.  I had to relive the pain of a diagnosis AGAIN.  I guess I can’t say if the pain would have been any less had I known all of these diagnoses were more of probabilities that possibilities, but I honestly think it wouldn’t have made each new diagnosis as gut wrenching.

    I was talking to Lynn Carahaly the other day, creator of the Speech EZ program for apraxia and apraxia expert out of Arizona,  and she said the following,

    Over my career specializing in the disorder, I definitely feel apraxia is rarely the primary issue, rather a sequela to a bigger picture.  The problem is SLP’s and parents are so focused on the speech and not looking at the big picture in early development.  There is this thinking that if we could just overcome the apraxia, everything will be OK.

    I let out a big sigh after reading that.  Anyone else who felt that way, will you raise your hand with me?  I fell into that category.  I was so convinced if we could just fight and beat this beast called apraxia, everything else was going to be okay, and man I was wrong.  Consequently, each new diagnosis brought this sense of total indignation.  We fought apraxia and WON!!  Why now did she have to deal with something else?

    I take a different approach now with my clients.  I am completely honest and transparent about the potential for co-morbid issues.  In fact, I told one mother the other day,

    Your daughter is at risk for dyslexia.  I recommend that for now we operate under the assumption she might have it and get her started early with pre-literacy and phonemic awareness activities; and if she doesn’t have dyslexia, we celebrate.

    I’m just giving parents, and now all of you, what I personally would have wanted to hear.  Lynn is right, and that’s why her program incorporates so many pre-literacy elements.  Let’s start looking at apraxia as more than just a speech disorder, and let’s celebrate if the child did indeed only have apraxia.   Once I started connecting with parents of kids who have global apraxia, only then did I realize every child with global apraxia had a co-morbid diagnosis of ADHD.  The same was true when I found the apraxia-kids facebook group and realized just how many kids with apraxia also had Sensory Processing Disorder!  Oh, and when I found out that and started talking to my global apraxia friends, just how many kids with global apraxia had a similar and rare presentation of sensory processing disorder in that they had a high tolerance for pain and an “under-responsive” tactile system!

    Parents and professionals, the moral of the story is this.  In most cases, apraxia is just a foreshadowing of additional neurological conditions to come.  There are many, MANY, combinations it would be impossible to predict at that initial CAS dx.  Dr. Ruth Stoeckel did a talk at one apraxia conference titled “Co-Occurring Diagnoses: Other Letters that may go with CAS.”  There are MANY other conditions that can and DO go with CAS.  I think it benefits parents and professionals to know we are dealing with just the beginning of what is probably a very bigger picture.

     

    Resources:

    Duchow, H., Lindsay, A., Roth, K., Schell, S., Allen, D., & Boliek, C. A. (2019). The co-occurrence of possible developmental coordination disorder and suspected childhood apraxia of speech. Canadian Journal of Speech-Language Pathology and Audiology.

    Iuzzini-Seigel, J. (2019). Motor Performance in Children With Childhood Apraxia of Speech and Speech Sound Disorders. Journal of Speech, Language, and Hearing Research, 62(9), 3220-3233.

    Langer, N., Benjamin, C., Becker, B. L., & Gaab, N. (2019). Comorbidity of reading disabilities and ADHD: structural and functional brain characteristics. Human brain mapping, 40(9), 2677-2698.
    Lewis, B. A., Freebairn, L. A., Hansen, A. J., Iyengar, S. K., & Taylor, H. G. (2004). School-age follow-up of children with childhood apraxia of speech. Language, Speech, and Hearing Services in Schools.
    Miller, G. J., Lewis, B., Benchek, P., Freebairn, L., Tag, J., Budge, K., … & Stein, C. (2019). Reading Outcomes for Individuals With Histories of Suspected Childhood Apraxia of Speech. American journal of speech-language pathology, 1-16.
    Teverovsky, E. G., Bickel, J. O., & Feldman, H. M. (2009). Functional characteristics of children diagnosed with childhood apraxia of speech. Disability and Rehabilitation, 31(2), 94-102.

     

    Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado. 

  • Report cards are bittersweet with special needs

    Report cards are bittersweet with special needs

    End of the year is here! Summer is around the corner and the excitement of summer is palpable. There is something else though that is tangible I hold right before the excitement of summer.  It’s a small manila envelope that holds the children’s report cards.

    When I was a kid, I LOVED report card season.  My report card was always glowing.  I couldn’t wait to take it home and show my parents who would shower me with accolades and possibly reward me with ice cream.  I could not WAIT to open up that envelope and see the delicious and positive contents hiding inside.

    Ashynn, my first born child with apraxia and related learning disabilities was the second time aside from myself that I had looked at report cards.  I remember opening up her first one and feeling like someone had sucker punched me.  Despite her working hard every night, and going to therapy almost every night, the scores were more than concerning.  The grades were absolutely devastating.

    Yes I KNEW she has on an IEP. Yes I KNEW she had a modified curriculum and the report card shows her performance based on same aged peers.  Yes, I KNEW that.  It didn’t make the blow any less intense.   How was it fair?? While other kids played soccer or did gymnastics, mine spent every spare minute in a therapy and yet she was still behind.  Again I ask you, “How is that fair??”  As she went through first grade I started taking longer and longer to open that envelope.  You have to work up to putting yourself through that kind of pain again.

    Ashlynn is in second grade now.  Her manila envelope aka report card was sent home first.  I saw it in her backpack. Yes, I saw it.  I never pulled it out.  Why would I?  I know what I’m going to see.  I’m going to see that in spite of the fact that she has therapy after therapy and tutoring after tutoring after school; she remains dificient in most areas of her life. Despite her positive attitude, her resiliency, and her stellar attention to task and work ethic in therapy…she has true disabilities that will persist throughout her entire academic career and will be highlighted by the scores on her report card.

    Yeah so that report card. It kinda makes me sick.  I have to work up to reading it and it usually takes a couple of weeks.

    One day later a same manila looking envelope ended up in my son’s backpack.  I found myself excited and ready to tear into it!  I had a hard time waiting until we drove home.   I was over the moon to read the narrative,

    “It has been a pleasure to be Jace’s Kindergarten teacher.  He is outgoing, inquisitive, and comes to school excited to see his friends. He is a hard worker and determined to do his best. He takes great pride in his work.”

    I looked at the description with awe.  The same could have been written about my daughter with disabilities, yet, this person, MY SON, had scored all three’s (A’s) and my daughter still remained far behind.

    My daughter is outgoing, inquisitive and loves to see her friends too.  She is a hard worker and is determined to do her best.  She takes great pride in her work too.

    The next morning I received a text from her special education teacher.

    “Did you read A’s Progress Report yet???”

    I had been caught.  I felt ashamed, but I wrote back honestly and said,

    “Looking at her report card is so painful I have to work up to looking at it.  It usually takes a week or more.”

    She wrote back that after her IEP in March she had completely revamped her programming and she encouraged me to look at it.  I thanked her and sighed a heavy sigh.  I wanted to see all the progress which would be on the special progress reports that are added to the report card based on her IEP (Individualized Education Plan) goals, but I would have to look at the report card too which I knew still had low scores.  I looked at the two manila envelopes lying on the floor in the living room.  One opened, and one un-opened.  I want to read all the wonderful progress, but I’m just not ready to get punched in the gut today with the other papers sitting behind it.

    Not yet.

    I will.

    I promise I will.

    I just can’t face it yet today.

  • Diagnosis, Disability, and Finding your Tribe

    Diagnosis, Disability, and Finding your Tribe

    ​Parenting children is hard.  That isn’t a secret.  Parenting a child with a disability has even extra challenges that shake us to our core.

    I have a daughter with special needs and numerous learning challenges.  When she was almost three, she received her first diagnosis of Childhood Apraxia of Speech, a rare and severe speech disorder in children.  That was the beginning of many a “dark day” in my parenting journey with her.  I remember putting her in her car seat, tears in my eyes as her bright blue eyes smiled back at me and seemed to ask, “why are you crying?”  I sobbed that day.  I cried for so many reasons.  Fear, uncertainty, guilt and confusion.  I texted a friend I was devastated, and I truly felt like I had the wind knocked out of me.

    Slowly I found a community of parents who had children with apraxia as well; and I started to feel hope again.  I started to believe what was possible for their children was possible for mine as well.  I found my tribe, as I like to say.  All these parents understood me, my daughter, our challenges and the significance of our small successes!  I discovered there was a walk to honor kids like mine and spread awareness.  I connected with others in my community and no longer felt alone.  I no longer felt devastated but instead felt blessed by the friendships I had formed.

    My daughter has went on to receive multiple and additional disabilities since that first one of apraxia.  I can’t lie.  Each new diagnosis, report, or low test score feels like a punch in the gut all over again.  However, we have our people now.  We have our tribe.  We have others who understand.  They understand that sometimes you are in such a state of deep grief you can do nothing else but cry and cannot face the world that day.  We also know that stage doesn’t last, and when a member of our tribe is down, we will rally around them and be ready to pick they back up when they are ready to face the day again.

    I learned that some of my darkest nights were followed by the most glorious sunrise; and I found that sunshine in the community around us.  No one should suffer alone.  No matter the struggle, we should all find others who understand our unique situation in the world.  For us, community was the light that found its way into the dark tunnel of grief and showed us the way out.