Category Archives: Autism

Unexpected Call From School …

So its Friday evening at the end of a long day at work, and I have settled down on the couch to relax.  The phone rings.  It’s Justin’s new science & homeroom teacher on the line.  [Inner dialogue: First week of school, sometimes a tough subject for him, inclusion class – uh oh – is there a problem???]

But what followed was the most lovely and heart-warming chat!

She called just to let me know how thrilled she was to have him in her class, and talked at length about how he had settled in with his table mates, was helping out another child that sits near him.  She said he was friendly, polite and (encouraging but also surprising!) that he’s speaking up already in class and asking for help if he doesn’t understand something.  She was encouraging and supportive, and said she felt confident that he would do well this year because he seems so focused on learning.

A few minutes after the call I asked Justin to come over and sit with me.  Then I shared with him some of the kind things his teacher had to say.  “Wow!” he said.  “That’s awesome.”  Then he beamed (sort of like in the pic below … but with less hair now) 🙂

What a LOVELY way to kick off the weekend!  I am so very grateful for the teachers who spend part of their Friday evening calling their students families and doing other things to help their students learn.

p.s.  For those new to the blog, Justin has high-functioning autism and is in an inclusion class (blended mainstream and special needs kids.)  So while this is not dramatic, its the small victories that make our days and this was a great one.  Here’s a post with a little more background – link

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3 Cheers for Surfers Healing!

Justin LOVES the water!  When he was younger, even though he could swim he loved to let himself sink to the bottom of the pool and rest there.  It was soothing for him, he said he liked the way it felt.  But how do you think lifeguards felt about that?  We know he could swim, but its unnerving.  You see, drowning is the leading cause of death for kids with autism.  And we live in Virginia Beach – surrounded by water at both the beach and the bay.  So the only way to retain our sanity as parents was to make sure he was a capable and confident swimmer.   So he swims, does SUP, and has tried surfing and snorkeling, too.  And he loves them all!

Today was Surfers Healing Virginia Beach, a highlight of the year for our autism community.

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The program runs camps around the world that pair pro surfers with kids with autism – to take them out to ride the waves and expose them to surfing.   If the organization is new to you, check out their website to learn more about this great org.  http://www.surfershealing.org

The kids love it so much that its in high demand.  The camp extended to two days, and the over 400 slots are reserved within less than an hour of opening!  And I can never say enough about the kindness and heart of the surfers who participate.  They are so great with our kids!

This was Justin’s second year and – true to its hashtag – it was #oneperfectday.

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The weather cooperated so we had sunny, clear blue skies and warm water.  The dolphins even made an appearance off the surfing area to And while I loved watching my little surfer, we stayed for hours watching so many other families cheer on their sons and daughters.

When it was Justin’s turn to surf, he confidently followed his surfer  out into the surf, and they paddled their board out a good distance to wait for some good waves.  They floated around for a while (my little guys might happily do that for hours) then caught their first wave rolling in.  With the help of his surfer, Justin rose to his knees and them stood up on the board.  Sometimes for a few seconds then a spill, sometimes longer as they rode the wave all the way in.  When they reached the coast, Justin would turn around and march back through the surf … ready to give it another go.  He was brave and confident and happy on the water.

Here are a couple pics I captured of Justin out on the water.  John Wright did the official pics and they should be posted soon.  Here’s his FB Page Link

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And here is a mesh of a few other pics I captured from the 1-2:30 slot on Saturday, Aug 15th.  (just click on the image to see the full image … the preview will just show a part).  Still trying out this new photo gallery, Mesh, to see what I think …

Thanks to Izzy Paskowitz for realizing that water helped your son, and growing a program to extend it to the global autism community.  We are so grateful!

Autism Awareness: Sensory Issues with Touch

April is Autism Awareness Month – so thought I would sprinkle a few slices of life throughout the month to give a little lens into a family with a child on the autism spectrum. There are so many different experiences – ours is just one, and much milder than many.

Our journey with autism has had plenty of Sensory Integration issues – basically challenges with sensory processing that can take many forms. One of the big ones for Justin when he was younger was the sense of touch.

THEN: for years, our little guy could not stand the feeling of fabric on his limbs. He walked around with his pant legs rolled up and his sleeves push up above his elbows. May sound like a minor issue, but when your child is always uncomfortable its a problem.  And while thats easier to work around in the summer with shorts and t-shirts, what about those cold weather months where no sleeves and pant legs are just not an option?

NOW: Over time, we found fabrics that were less irritating (lots and lots of fleece), never had any clothes with tags, and gradually over a couple of years he could tolerate the pant legs and sleeves.  Now its a distant memory … though he still has a wardrobe that is about as close to pajamas as you can get (still lots of fleece, PJs when he gets home, etc.)

But between THEN and NOW was a couple years of occupational therapy and lots of patience, support and flexibility as we worked to keep him comfortable.

Here’s a link below if you want to know a little more about Sensory Processing issues.

Sensory Processing Disorder Explained

Justin’s Tae Kwon Do Journey

In fourth grade,  our youngest son, Justin, transitioned from Montessori to a mainstream, neighborhood elementary school.

Well, at Back to School Night that first month, World Champion TKD visited the school and invited kids to come try out the program.  Master Park was enthusiastic, full of energy and encouraging kids to come out and give it a try.

 

 

Justin was really interested – maybe a little to my surprise – so the next week we visited.  That was about 2 1/2 years ago … and next month he will test for his Black Belt.  What an accomplishment, and we are thrilled for him!   It will be a big month ahead getting ready to test, and as the milestone approaches I couldn’t help but reflect on all that this program has done for him.

At first I wasn’t sure if Justin would thrive in the TKD program, was hesitant about whether being on the autism spectrum would get in the way of it being fun and his making progress.  But, boy, was I mistaken.

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  • Physically – the TKD form, board-breaking techniques and kicking combinations developed his gross motor skills and his overall coordination.  And Justin brought a level of precision and crispness to his work in form that I would not have expected.  The normally loose and floppy little guy can turn on the intensity when practicing in front of his instructors, competing or testing.  It’s like there is an ‘ON’ switch that flips when he is trying to earn a stripe, and great to know that he can dig deep to find that extra focus and commitment when he needs it.
  • Emotionally – Justin really does not like to make mistakes, especially ones that are noticed publicly.  But with TKD, you are constantly in learning mode as you earn stripes within a belt, and progress from one belt to another.  That made it more ‘normal’ to realize that in the beginning, before we master something, we all make mistakes.  That its nothing to be ashamed of and just part of life and learning and growing.  He also learned about processing disappointment and bouncing back – especially when he thought he was ready to earn a stripe but he did not, and had to keep honing his practice to try another day.  Hard to see him disappointed, but so important that he learn to handle that disappointment and not give up.

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  • Socially – One of my favorite memories of Justin’s TKD studies is the first time an instructor entrusted him with a small group of students in his belt, and asked Justin to guide the other kids through their form practice.  He was BEAMING!  And rigorous.  While some might run the group through, then goof off or take a break, these kids did constant drills for about 15 minutes solid … he was focused and a little taskmaster!  Who knew?!   Master Park is very clear with all the students that he expects them to be students of great character – being respectful, diligent and kind.  Through parent report cards, he publicly shares the kids results with the class – praising those who are dong well, and challenging but also encouraging those who are not meeting those standards at home with their families.

22193_4030952666590_1841810661_nThen there’s the impact of setting a long term goal and working diligently until you attain it.  That’s something that I know will stay with him and help him feel that he can set other big goals and through commitment and hard work achieve them.  The confidence that comes with that is terrific and I am so glad that we visited the dojang way back in September 2011.

 

And like everything else in life, Justin would be ready for this big milestone without the support, encouragement and coaching of Master Park and all of his instructors.  We thank you SO much!!  Now for the final stretch to get ready for testing day next month.

 

I know that each child on the autism spectrum is unique in their abilities and their areas of challenge, and tae kwon do may not be right for many.  But in our case it has been a blessing and really helped with Justin’s development.  Our other son who is neuro-typical is also in the program and it has been great for him, too.  Just focused this post on his it has helped with the development of our youngest.

Kwanzaa 2014 – and Justin’s Rite of Passage

We have participated in a Kwanzaa celebration annually for about 15 years now.  Our cousins Veldon and LaKicia Sallee have led the annual gathering of family and friends each year, and its a family celebration that everyone looks forward to each year.

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Kwanzaa is a cultural celebration of African family, community and culture.  It celebrates values like faith, self-determination, responsibility and creativity.  And for us, its a time when everyone focuses on lifting up family members – recognizing their progress, their accomplishments, remembering our elders and those that have left this world, and offering words of encouragement and wisdom to the children of the family.

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Here’s a link to read more about the 7 principles that Kwanzaa celebrates.

Principles and Values of Kwanzaa Celebration

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Each year, one part of the program is a Rite of Passage, where we honor, recognize and celebrate the youth in our family that have reached 13 years of age.   We celebrate their character, their gift, their accomplishments, and both their parents and extended family members of all ages offer them words of advice to carry into their journey through the challenging teen years ahead and onto adulthood.   Today it was Justin’s turn to be recognized and honored.

And our challenge tonight – Bryce’s and mine – was to try to sum up the life and character of this amazing little guy who has touched our lives and changed us as people and as parents in so many ways.  He is so many things, and not defined by any one of them.   He has autism, but is not defined by it.  He also loves running, Tae Kwon Do, Legos, and movies.  He’s silly, a movie buff, wears pajamas whenever humanly possible.

And he has come so very far …

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Academically, I remember back to around 5 years old, when he was just beginning to really speak in sentences.  To 7 or 8, when speech therapy was having a big impact, and helping him communicate more effectively.  To his years of occupational therapy to develop his fine and gross motor skills.  I remember Miss Subha and his other wonderful Montessori teachers who worked so closely to draw him out, stretch and challenge him.  Then his transition to a mainstream school and the wonderful teacher and administrators that showed caring and attention, and helped ensure that Justin had the supports he needed to thrive in that new setting.  And sports – how running, swimming, stand-up paddling, and tae kwon do have given him confidence in his strength, endurance and physical abilities.

Socially, I remember the early days when he would stand at the edge of the playground and not approach the other kids, or the sensory issues that had him rolling up his pants and pushing up his sleeves, rotating between a small set of clothes that he was comfortable in.  I smile when I think of his love of pajamas that has persisted even to this day- changing into them immediately when he returns home even still, no matter the time of day.

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Justin has been blessed with a few close friends over the years.  Best among them was Josh as the loving and giving big brother who he loved dearly.  But beyond his brother, these friends have loved, accepted and been protective of Justin – as school play turned to visits and later to sleepovers.  Friends like Michael and James and now Jacob who have helped him really develop socially and been wonderful friends to him.  His friendships have been as much a part of his growth and development as the teachers and other adults.

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During Kwanzaa, Bryce did a wonderful job describing Justin’s progress and work ethic and kindness.

And as the emotion welled up, I tried to to talk to the family about Justin’s positive approach to life and happy disposition.  How throughout any challenge – academic/learning difficulties, social situations, disappointments or other difficulties – he always remains positive and optimistic.  He shakes things off as best he can and tries again.  And that constant flow of positive feeling is amazing and inspiring.

Justin receive many words of encouragement, praise and wisdom.  We truly appreciate everyone that has encouraged him throughout his journey.  He know he has many rooting for him!  My father-in-law summed it up well at the end of the evening: Justin has a pure heart.

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And that’s really what it comes down to.  His heart is pure and vulnerable and open.    We hope and pray that even as he grows,  his resilience and positive spirit will continue on.

 

I am so grateful to be his Mom.  Love you, Justin!

The small things we take for granted …

One of the many things affected by autism is social interactions.  The easy and natural ways that people engage in discussions, or share a joke, or just casually converse are much less natural.  Discussions with people outside of the family can be awkward, direct and typically short.  (Unless he’s telling them a story …)

Well this year Justin has develop a close friendship with his buddy Jacob.  And I have loved watching their friendship grow and seeing them interact so very much.  Makes my heart smile!

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They share a love of movies and can trade facts on movie history and trivia like the best of them – release dates, producers, casts, production facts, you name it.   Their personalities are not the same – my guy a little quieter and more shy outside the family, his buddy more talkative and expressive.  But when they are together I just love to watch the chemistry – Justin is drawn out a little more, laughs a little louder, is more talkative, and seems so at ease.  Nothing awkward about it at all.  Typical and taken for granted for many, HUGE for families with kids on the autism spectrum.

So this week was Justin’s birthday, and his buddy called to wish him a Happy Birthday.  I expected a 30-second call that would go something like “Hi.  Happy Birthday.  Thanks.  Bye.”   Not at all …

But much to my surprise, what happened was completely different.  They talked … and talked … and talked.  We had to end the discussion to head out to his birthday dinner – reluctantly.  Lovely conversation – about Halloween costumes, carving jack-o’lanterns, and upcoming movies to see.   I could hear encouragement “that sounds really fun!’ and connection “we need to see that movie together!” and laughter.

I can’t even say just how much I smiled listening one side of the discussion.  Phone calls with friends … one of the small things we can take for granted …

 

But is he learning??

If you’ve met one child with autism … you’ve met ONE child with autism.   Well our young man made the leap to middle school and we were on pins and needles for the first week …

  • will he make the transition between classes OK?
  • will he learn and remember how to open his locker?
  • will kids tease him?
  • will we have ANY idea what’s going on  – what’s working, what’s not with so many teachers?

In our case, Justin doesn’t really have behavioral issues that would draw attention – no meltdowns, no stimming, no anger issues.  Doesn’t mean he isn’t challenged with processing everything, but its more internalized for him.  Easier for people not to notice.  He’s also pretty polite and follows instructions, so would not naturally draw attention because of his behavior.

So the first couple of weeks passed and we were feeling pretty good.  Likes his teachers, good transitions, sitting with a couple kids from elementary at lunch, etc.  Whew!  What a relief.  The teachers we met and his case manager have been kind and supportive.

Now we are into the third week of school.  Past the mechanics, into the academics.  And its getting bumpy, and I’m getting more and more uncomfortable.   Trying to let go of the nervousness and know that we will work with his teachers to make adjustments that help him succeed.  But still troubled … for now.

Wrestling with and reflecting on questions like:

He’s present, hearing the lessons, and taking quizzes … but is he LEARNING?

Some of the recent results suggest maybe not as much as expected.  To quote him: “my brain just got all jumbled up with those quizzes.”

My perspective on kids with developmental delays – particularly our own – is  that its our job along with their teaching team to redefine success to meet them where they are at developmentally and help them grow from there.  To redefine the rubric for success based on their ability – stretching and challenging them of course.

For school, and particularly for Justin, to me it means:


adjusted learning goals

+ good learning environment

+ mental focus

=  SUCCESS, progress and positive reinforcement


If these things are true, then how can a child who is really applying themselves and working to the best of their ability fall short of expectations?

When we see him applying himself and trying hard and the results and feedback don’t match up,  then I have to wonder what is out of balance?   He’s such a smart boy but needs more time to process things, and maybe its all just coming a little too fast ??  He really wants to achieve and to make us proud, so we have to find a way to make it clear that his efforts are worthwhile.  It’s important for his morale and his psyche.  None of us want to work hard and do our best only to feel like we still can’t hit the mark, right?

So we are embarking on a journey to get this darn learning equation back into balance.  Meeting with his teaching team on Friday to start the discussion and hopeful of some course adjustments to get things back into balance.  The sky is not falling, I just want the very best learning experience for the little guy.  He deserves it.  I’m hopeful …

Middle School … here he comes!

Middle School Orientation for Justin … drum roll please!

Well, the morning started out a little dicey as we pulled up to the middle school parking lot and dozens of geese were grazing across the lawn.  Justin really REALLY dislikes geese – thinks they are creepy and might chase you.  He hooked his arm in mine (for geese protection) and we walked across the parking lot toward the middle school entrance.  He was in good spirits and excited about Lancer Launch – the rising 6th grader orientation day at our new middle school, Landstown Middle.  And once we cleared Geese Central he was all grins, even posing for a pic on the Lancer Bench out front.

 

From the moment we walked in the school you could feel a great, positive vibe – SO thrilled by that.

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First positive sign was seen the smiling face of a family friend from Justin’s running club at the PTA table – wide smile and warm welcomes all around!

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As we head toward registration one of Justin’s best buddies sees us and rushes forward to give me a bear hug – happiness!   Volunteers all around were helpful, energetic, smiling.  They shepherded the kids off to their homeroom classes and had a great day of touring the school, visiting classes and generally having a great time.  Could not have asked for a better start to the year – and SO grateful for the incredible effort that you could tell had gone into the day.  Bryce and I left feeling like he was going to be in good hands.  Justin said it was ‘awesome’ and he’s excited for the first day of school.  He knows where his classes are, can find the library, is amazed at the size of the school (very big) and is excited about all of the clubs.

 

Pretty incredible and so encouraging to realize just how far Justin has come.  Since he was diagnosed on the autism spectrum at about 5 years old, he (and we) have grown so much.

 

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On every single front – academic, social, emotional, physical – he has made such progress.  And as he has grown, some symptoms of his autism receded and really are not present anymore, while others are revealed in different ways as he gets older.

 

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So we keep learning and listening, adapting to meet him where he’s at and help him grow.  And there are so very many people who have helped him reach this point where he is ready for middle school – it feels right to share our thanks and our love with a few of them as he gets ready for this next stage.

  • from Montessori teachers like the lovely Miss Subha (wish I could find a pic), to
  • his speech and occupational therapists over the years,

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  • from the amazing Newcastle family of teachers and administrators,  to

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  • the incredible Kellie Maier of KelsKids who has helped him become so confident in the water with his surfing and stand up paddling

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  • the wonderful tae kwon do crew at World Champion TKD who have challenged him and supported him, readying him to test for Junior Black Belt this coming week!

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  • his running coaches from POWER – especially Coach Todd and Coach Dennis – who have pushed and encouraged Justin in his running

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  • to all of the family members who have cheered him on, listened intently to his many stories, played along with the hundreds of version of Top 10 lists and ‘what if’ discussions.  Thanks Natalie and Josh for your patience and kindness with him

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  • and the friends (both ours and his) who have loved him for exactly the person he is, and by being there and sharing life have helped him to grow into the sweet, silly, happy kid that he is.  The sleepovers, birthday parties, swim races, Lego adventures and all around silly times are some of his favorite moments and memories!

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Yet for all the progress, it’s equally unnerving to see his quirks and perseverance on some topics and wonder how kids that are new to him will react.  Will he build on the social progress he has made in recent years, or withdraw in this new setting?

Will his complete love and mastery of all things superhero/supervillain help him find friends with common interests, or will he find it hard to connect with others?

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And academically, will this much larger school setting be able to adapt to help him learn at his pace?  He is incredibly smart, but learns differently and takes more time to process.  Big worry there … I hope so.

It feels like such a milestone to not only be old enough to be in middle school, but to seem developmentally ready.  He has work ahead to get to grade level in all of his studies … but the gap closes every year!

 

 

In every one of his major transitions over the years, there are always similar questions.  But having supportive and caring teachers and support teams around him have always been the best sign that it will work out.  And that’s why this morning’s Lancer Launch was especially encouraging – I left feeling like they would look out for him.  I’m sure there will be bumps along the way, but a positive partnership goes a long way in weathering the storms when they come.

So excited for Justin and the year ahead!  Go Lancers!!  

Water – Fun, Safety and Autism

When you get to know other families of kids with autism, you quickly realize a terrific but unnerving pattern – they are drawn to water.     Thankfully, Justin took to swimming pretty early and seems to be half boy/half fish, so I usually feel pretty safe.  But, boy, can he give the lifeguards a scare.  You see, he LOVES the feeling of floating and drifting – like allowing himself to drift to the bottom of the pool and hang out there til he needs air.  yeah … just the kind of thing to panic a lifeguard.   Freaks them out!  But its sensory and relaxing for him.  We had to create some rules so that he would be a swimmer in good standing … it all worked out.

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But that love of water is wonderful – it opens up so many water sports and family fun … swimming, kayaking, SUP, surfing, etc.    And the exercise is great too!

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But on a more serious note,we have all seen the news and noticed how many times kids with autism stray from their homes, wander off, and water is often their first destination.  Many times with tragic consequences.  How many of our hearts have broken to hear of kids on the autism spectrum who were found too late – in the water – drowned.  That’s the dark side of this attraction to water.  And if you live in a beach town with lots of waterways, feeling confident that your kids are safe in the water is critical (for your own sanity as a parent …)

Which brings me to water safety, and the reason why so many of us LOVE Kellie Maier and her non-profit KelsKids.

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Kellie devotes herself to working, playing and laughing with our kids with special needs in and on the water.  She has been the key to water safety and joy on the water for so many of the kids in our community.  Justin has taken classes, Joshua helps her out as a volunteer and assistant.  

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She’s committed to these kids and the love and caring just flows right out of her.  Amazing!  

Tonight is the fundraising event for KelsKids and many of us will be out in force – really to laugh, share, connect, and celebrate her work and our kids.  We love you, Kellie!!  Excited for this evening.  Let’s all get there – checkbooks in hand – to generously bid on the auction and raise some money for this fantastic lady and org!

Photo credit to Suzi Noyes – awesome friend who captures amazing photographs of our kids adventures together.

9/1/15 UPDATE: Kaitlynn King, a 7-year old member of the autism community here in Virginia Beach, wandered from her home and drowned in her neighbors pool today.  Devastating and tragic.  We need more scholarships to help any spectrum family get water safety lessons and get water-safe.  Please consider a donation of a scholarship in Kaitlynn’s memory.  Kellie Maier is such a champion of spectrum kids and water safety.  You can donate a scholarship by contacting Kellie at kelskids.org or at Kellie’s Facebook Page.  Let’s help!

Behavioral Changes … and MiniFigure solutions

It took me a little time, but I have been really processing some troubling and gradual changes we have seen in our littlest guy.   In the 7 years since Justin’s diagnosis with high-functioning autism, We have been so blessed to see incredible progress – social, functional, sensory, speech, academic.

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Fairly steady progress … sometimes new challenges or curve balls …but progress.

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Our life and family have gladly adjusted in lots of ways to accommodate raising this amazing little guy … he’s a happy kid and our routines are pretty consistent.

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But lately,  sometimes we turn to realize that there are silent tears flowing down his cheeks over something that he would have taken in stride a few months ago .   Could it be pre-teen hormones (can’t believe he is 12!!)? Sadness that his very best buddy Josh is quickly growing into a young man and more independent?  Something else??

And couple that with some real and perceptible changes in his attention and focus.  He’s more scattered at times, less connected to what’s around him sometimes.  Not all the time, but enough that we have noticed a bit at home and more at school.   And his progress toward his goals at school is flat.  Less time outside being active?  Too much screen time?  Something else??

So much to make sense of lately.  Not nearly what some autism spectrum families I know navigate, but changes nonetheless and difficult ones for him.

Well of all these things, the one we have had the most success with in the past is focus.

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So when the going gets tough, the tough get …creative!

One small part of our game plan is to keep him motivated to keep his focus and attention up at school.  He responds VERY well to even small rewards like a trip to the ice cream shop or a game of family bingo. So tonight – as one small part of the plan to get to the bottom of these changes – we relaunched our iRewards program, with a ‘bonus.’

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This last year we have used a great app to keep track of Justin’s chores/goals and the rewards that we give him – called iRewards Chart.  Great little app, and we have loved it.

http://www.irewardchart.com/#

It has a nice library of goals and rewards, all customizable.  And every night Justin would score himself on how he did … on things like manners, brushing his teeth, clearing the dinner table, etc …  plus a score from his teacher on focus and following directions. Then we would talk about the scores together at bedtime and see if they were fair, what worked well and what didn’t … and we might adjust some score up or down.  Then the points he earned could be traded for rewards later on.   And it was a great routine … that we somehow fell out of recently.  And so that connection between his accomplishments and rewards wasn’t as front and center as before.

So to get back into the swing of things … tonight I added a little BONUS (his eyes LIT UP!)   Each day at school that he earns a 9 or 10 on focus/attention in class, he gets a special Success sticker.  5 of these puppies gets him a Lego minifigure!!

He’s a BIG collector of these guys so this is serious business to have one on the line for only 5 days of excellent class focus.   And the glimmer in his eye was back at least for tonight, with plans of how to get his mind ready after breakfast for a great day.  of how he will tell his teacher that he wants to get back to the 9 and 10 scores of the fall.

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Lots of other steps ahead to figure out the other changes he’s going through … but tonight, I am at least happy that he feels motivated to put his best foot forward at school while we figure out the rest.  Fingers crossed … and off to buy some minifigures soon (I hope)

 

Just Breathe … and go to my happy place

Mom: “What can you share about your special ed program, and the transition into middle school (my son has high functioning autism)?”

Administrator:” We treat them ‘normal’ … ” (in fairness, they did finish the sentence but I turned off.

Mom: “You mean … because they ARE normal, right???”    (sidebar: very out of character for me to respond that way but SERIOUSLY?!  This is a parent orientation.)

Yes, this was the low point of my first visit to the (now potential) future middle school for our little guy in the fall.  It started off great – upbeat, positive, good info.  Administration and student speakers talked about working hard to make the middle school transition a great one for the kids and talked about how they accomplish that.

But no special ed info at all.  None.  As it wrapped, they pointed out someone to answer questions.   I wish they had not … I was feeling pretty good.  That little snippet above was the jewel of the exchange.  It did neutralize a bit after that, but basically this person seemed to think it was sufficient to tell a parent of a child with special needs that they will be in a ‘normal’ classroom and the teachers are experienced. Nothing about transitions, or IEPs, or how their curriculum is modified, etc etc.  Any actual questions … I should schedule an appt for those.  Apparently parent orientation was not the right place to address these things.

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So I stewed as we toured the sixth grade classrooms, ruminated while we hit the gym, and was about to re-approach for a second attempt.  Can’t leave this bad taste in my mouth about the school I thought.  And thankfully the next person I asked the same basic question was so kind, and very helpful.  And the information was encouraging.  It’s not that the school couldn’t address my concerns – its that the spokesperson did it horribly.   Which brought me right back to our gifts … know what they are and play to your strengths.  Of all the people they could have assigned to speak to new parents, I KNOW there was someone who had a gift for connection and engagement that could have left us feeling so different.

So how do I feel … frustrated!  disappointed!  I hoped for so much more – like encouragement, a supportive middle school team, partners.  And it may be there yet … but not the ‘first look’ I wanted.    But before I drive myself nuts

I am going to just breathe … and go to my happy place 

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(as depicted by a wonderful artist and friend, Clayton Singleton, in this great painting.)

Living Our Challenges, In Community

The youngest of our three incredible kids has high-functioning autism, and its been about 7 years since he was diagnosed.  This has brought a whole other dimension of family and parenting experiences to us.  Our special needs community is a vital part of our family life today, but it wasn’t always that way.

For the first few years after our youngest son was diagnosed with high-functioning autism, I really didn’t want to meet other families of kids on the spectrum.  Didn’t want to join any groups, attend any socials, share our story.  I was sure that our little guy was different.  That other families were experiencing challenges much more intense than our own, and that I could not relate to them.  That it wasn’t important  to us,  or to Justin.  

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But in hindsight, I realize that I just didn’t want to identify with ‘special needs’ or ‘disability’ … it seemed like a sign of weakness somehow.  I wanted to fix this situation  (spoiler alert … this is a theme for me!) and move on.  We were working hard for our son’s development, but sort of in denial that his diagnosis would shift something permanently in how we would experience parenting and family.

And over those early years he did make incredible strides, thanks to a wonderful team of teachers, speech and occupational therapists, and an incredibly loving and supportive family.  

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But his condition didn’t go away.  It was more manageable, and he was developing and progressing, but clearly we were going to be in this for the long haul.  And it felt like we were navigating it by ourselves.  So slowly … ever so slowly … I started to plug into our special needs community.  And it was POWERFUL, and such a blessing.

We are  part of an amazing network of families of kids with special needs here in Hampton Roads, Spectrum Parents.  Through this group of families raising kids with special needs, we support one another, we connect and are not alone on this journey.  And as much as we integrate our kids in so many settings, its also great to have them play and experience things among other kids with similar lives.  If you are in Hampton Roads, we would love to connect with you at:   https://www.facebook.com/groups/spectrumparents/

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But no matter where you live, this type of connection and community can enrich you and help you thrive!    And maybe its not special needs, its something else that is part of your life experience … a challenge or weight that may be a bit lighter if shared with others.  Even among the hundreds of social connections we all have in social media, many are superficial, and these deeper connections breathe honesty and life into us, I think.

More to follow in future posts in simple ways to get one going in your community.    But you have to be a little vulnerable … to go out to an event, to share your story, to build connections.   It will be SO worth it!