benjaminsrpmjourney

I apologize..it’s been way too long since we wrote in this blog. There really is no excuse..we were busy living life. The good and the bad.  Benjamin completed his sophomore year at high school and will start his junior year in a month.  He’s now a 6’2″ teenager who loves to go to bed late, sleep in, roller blade (a new sport he has mastered) and ride roller coasters.

Benjamin got to participate in his first autism advocacy event at the start of the summer. Thanks to one of Jeff’s fellow Autism Speaks board members, he and another young man with autism were guest speakers at  a ‘fireside chat’ for employees  to learn more about autism. There were probably 100+ people there.  They were given questions in advance that Benjamin prepared. Jeff put this great video  together (kudos to his video making skills) that includes Benjamin’s contribution using text-to-speech. Click on this YouTube link .  Benjamin did really awesome. It was over an hour and a half long. He was very excited to be part of it. He’s said before that he wants to be an advocate for people like him. He certainly made a great start!

Rollerblading this spring

Speaking event

Speaking event

The first semester of High School is about to come to a close.  Benjamin has transitioned well and is enjoying all that High School has to offer. He’s been able to have experiences he’s never had before.

We decided to go out on a limb  and bring him to a home football game. His first ever football game (he’s not a big sports fan). We, of course, had to experience it as every high schooler does and sat, or more correctly, stood, in the student section.  I’m not sure any student sits :-)…  There’s a lot of activity going on!  I think Benjamin stood the whole time by the rails looking out on the field. ‘Awesome’ is how he described it! There was one more home game before the end of the season and sporting his school team’s spirit wear, he, Dad and Timothy had another great night.  We’ll definitely be attending more games next season!

Stevenson is a very large high school  – over 4,000 kids.  Freshmen hail from many surrounding middle school districts. Making friends is hard for any freshman.  The best place to make friends is through a great freshman mentor program (a year long program to help kids acclimate to the school), clubs (they have over 100 clubs in the school) and sports.  Benjamin had gone through the list of clubs prior to starting school and had made a list of his top four choices. The first one was Best Buddies.  This is a national program – kids with a disability are paired up with a peer buddy and there are two planned events after school each month. He’s been paired with two great kids -a freshman boy and sophomore girl.  He loves those two times a month that he spends with them!

The very top of his list was a club called Operation Snowball.  This was the club I mentioned in the last post where he was asking some seniors in the student lounge on the very first week of school if accommodations could be made so he could attend. It’s a three day retreat on a campgrounds in Wisconsin.  The description of the club is:’ Snowball is a way to boost your self-esteem by being accepted for who you are, not what others want you to be, and to have a lot of fun doing it. Students from Stevenson have the opportunity to attend the weekend and are given the chance to get to know each other despite what group they are a part of in school.’ It was exactly what Benjamin wanted!

Benjamin’s overriding goal for high school has been to make friends. He has been making some friends but not any many as he wanted and not as close friends as he wanted.  The school was very accommodating and made the necessarily accommodations for him to go.  Kristen, of course, went with him.  I think his words and the grin on his face in the attached pictures say it all!  His words to us as he went to bed the evening he returned home: ‘Really had a great weekend.  It was all that I wanted it to be!’  There were about 90 kids that went and they broke the kids into small groups, about 10 kids per group.  They then met with that small group a number of times over the three days. The kids there were open and accepting and really embraced Benjamin. He feels like he has finally made new friends.

High school..freshman…they sound so frightening. But we’re there..we made that leap. Benjamin is now in week three of his freshman year at Stevenson High School!  The night before he started, Jeff and I were so nervous. We were a lot more nervous than Benjamin.  We asked him if he wanted to talk about anything.  All he wanted was ‘I want so much that you pray that it all goes well’.  And it did..the first day, the first week, then the second week.

High school is a big step for any kid, expectations are so much higher.  His day is longer, he’s expected to stay in classes for the whole period (periods are longer than his middle school) and he’s pretty much ‘on’ all day long.  He certainly looks like a high schooler (he grow several inches over the summer, towering over me now and wears a size 12 shoe) and he’s determined to act like one too! Benjamin has really stepped up to the plate and is showing a level of maturity that we are so proud of it. We feel very blessed that Kristen, his communication partner, is with him during the day as his full time assistant.  Thanks to her being with him he can whatever interactions he wants to have, such as asking some seniors in the student lounge on his third day of school if they could make some modifications to a weekend wilderness club adventure he’d like to be part of.  Shy is one thing he’s not :-)…

The school team have been phenomenal is really trying to get to know Benjamin and to listen to his input (and believe me, he has input on everything). A couple of staff members began RPM training during summer school and have picked that up again.  As always, Benjamin is more effective and efficient at describing things, so in his own words :’Taking it better than I thought. Getting the hang of things. Didn’t realize I’d like it so much. Rest assured I will make some mistakes but it will surely be an adventure’.

We’ll be sure to keep you updated on ‘the adventure’!

The months that have passed since our last blog post have been incredibly eventful for Benjamin.  Benjamin has graduated from 8th grade and has secured placement at Stevenson High School, where he has already completed summer school.  We’ll talk more about his journey to high school in a future blog.  For today, let’s focus on the exciting milestone of completing 8th grade.

Benjamin entered Keshet partway through 3rd grade after making very little progress at his prior therapeutic day school.  Keshet’s staff took a very humanitarian and loving approach to working with Benjamin, and although they did not have a magic pill for understanding him and teaching him, their administrator really connected with us when she talked about the importance of respecting “the culture of people with autism.”  Perhaps none of us could have defined what such a culture really was, but to us the phrase affirmed that Keshet was a place that was open to ideas and pursuing the best interest of the student.  How true that proved to be!

As we have noted in prior blog entries, Benjamin only began using Rapid Prompting Method as his primary mode of learning and communication in 7th grade, with the full transformation occurring this past year in 8th grade.  However, the Keshet staff had suggested that Benjamin might benefit from RPM after another student who is the same age as Benjamin came to Keshet at the beginning of Benjamin’s 6th grade year.  I still remember when Ashling called me when I was on a business trip in Scottsdale telling me about this other student and Keshet’s suggestion that perhaps RPM could be a useful approach for Benjamin.  Of course, Keshet was not equipped at that time to introduce RPM for Benjamin, but the very fact they suggested it demonstrated their commitment to open-mindedness that we felt from the very beginning.

Ashling had heard of RPM before.  It seemed like another of countless approaches in the cornucopia of autism therapies and treatments, but we had never encountered anyone with any personal experience of using RPM.  Now, that changed.  I won’t recount all that happened from 6th grade until now, as that has been well documented in earlier entries. But we do need to pay a debt of gratitude to Keshet for providing the environment, despite changes in administration and teaching staff over the years, where Benjamin finally flourished.

Throughout Benjamin’s 8th grade year, he had many opportunities to interact with students from the adjoining and affiliated private school, Solomon Schechter, and he counts many of these students as his close friends.  Keshet students are included with Schechter students for graduation, and it was wonderful to see Benjamin sitting on stage along with his fellow classmates in his blue cap and gown, enjoying the musical program and speeches (with just a couple breaks offstage mixed in).  At the end of the ceremony during the diploma presentation, each student read a prepared statement about their experience, which was simultaneously portrayed onscreen.  Benjamin also prepared a message using his letter board, and one of his close friends stood beside him and read it, barely able to hold back the tears.  Here is his message:

“Hope is holding on to the dreams that are dear to our hearts no matter how impossible they seem, and that is my story.  I hold close the last couple of years as I found communication, friends, and the ability to interact and participate in group work during Mr. Chanan’s social studies class – and with fun things too…peer lunches, roller skating, and ice skating at the 8th grade party.  I can now say, for the first time, that I belong and have friends – don’t ever lose hope.”      –Benjamin Smidt, 8th Grade Graduation

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It’s hard to believe that 2016 is already over.  What an eventful year it has been for Benjamin and RPM!  Since our last post, Benjamin has continued his amazing progress having found his voice.

I still vividly remember when Benjamin was just a few weeks into first grade–over seven years ago(!).  We had heard that “inclusion” was very important, so we requested that Benjamin be placed in a regular 1st grade classroom with a teacher’s aide.  As I recall, it took some effort to get the school to agree, which we felt was mainly because of a lack of budget.

Within a few weeks, our happy and largely peaceful 6-year old son was having a lot of disruptive outbursts in school.  I went in to observe this very unexpected behavior and was disheartened to see Benjamin sitting with his aide at the edge of the classroom with absolutely no ability to participate.  When he was pulled out of the classroom into the resource room for special instruction, I was shocked to see him go into a full meltdown, throwing himself on the floor and biting his arms (something he had never done to that point but still does to this day when he feels stressed or alienated).  It was shortly after that observation that we worked with the school to have Benjamin placed in a therapeutic day school.  Inclusion was off the table.

Why do I start this blog entry with that story?  Well, seven years later, thanks to RPM, we have learned the difference between “inclusion” and truly “being included.”  Benjamin now is able to work with Kristen, his RPM communication partner, at school every day, and his teacher, Corrine, has adjusted his entire school experience around his new abilities.   The psychologist for our school district performed a whole battery of academic assessment tests, which Benjamin completed using RPM over dozens of hours leading up to the IEP meeting.  We were so proud when we participated in his annual IEP meeting this Fall to find that he has only one academic goal (to catch him up on writing styles that he had missed out on) because he is performing at or above grade level on all subjects as demonstrated by the academic assessments!

Benjamin has always been a very social kid, but with no way to express his thoughts, this sociability has been a source of great angst for him.  Benjamin now participates in mainstream classes with other 8th graders, and unlike his experience in first grade, he is now fully included.  As a result, he has begun to develop friendships that extend outside of classroom.  Several of his 8th grade classmates take turns in small groups having lunch with Benjamin.  One classmate who is fairly new to the school wrote him a note just before Thanksgiving break telling Benjamin what an inspiration he is to her and how glad she is to have the chance to know him.

Benjamin is also now able to be included in our weekly church gatherings.  He told us that he wanted to participate, and he stood up in front of the entire church group to share his decision. Before every church meeting Benjamin reads the Bible with Ashling and prepares his thoughts on what they read, which either Ashling or I then read (verbatim–his voice) on his behalf during the service.  Benjamin’s thoughts are very deep and also very concise–I have a lot to learn from him in that department!  Benjamin sits attentively when we share his thoughts and is clearly so glad to fully participate–we almost never have to leave the service early, which was previously very common.

One final example of Benjamin’s emerging opportunity to be included came this past week over the holiday break.  Ashling’s brother visited from Ireland with his wife and four children.  Benjamin’s older three cousins are very close to him in age, at 14, 13 and 11 years old.  Benjamin had a fantastic time during their entire visit, and the only time he became upset was early in the visit, and he quickly answered: “I am angry that I cannot interact with Adam (his oldest cousin).”  We made sure to set up opportunities for them to talk throughout the week, which both boys loved.

We went away for two nights to a water park at the Wisconsin Dells during their visit.  For the first several hours at the water park, I maintained my usual duty of chaperoning Benjamin on every water ride.  This is mainly to help Benjamin appropriately stand in line, which is physically challenging for him.  It is also to deal with meltdowns that can occur when he loses his patience waiting.  However, while Benjamin’s line-waiting skills are still a challenge, this year there were no meltdowns.  Eventually Benjamin’s cousins effectively stole him away from me (as they could see I was “over-parenting”).  For the first time ever, Benjamin was able to experience the water park with kids his own age!  They helped him wait in line, and they helped him enter and exit the slides appropriately.  Most importantly, they did it in a fully accepting way, as peers, cousins and friends, not as a “chaperone.” As you can see in the pictures, Benjamin has never been happier!

I am convinced that our original request back when Benjamin was in first grade was the right one: Benjamin deserves to be included.  However, what we did not know at that time was how unprepared the “environment” (schools, SLP’s, psychologists, pediatricians, neurologists, researchers, etc.) was to help a person with Benjamin’s needs and abilities. The fundamental reason for this is that autism is still such a mystery, and we accept our responsibility to learn and advocate, and especially to help other non-/limited-verbal people with autism find their voice as Benjamin is doing.

We have seen this past year how validating it is for Benjamin to be included.  He has taken the very little bit of rope that life has provided him and is not only holding on for dear life but is pulling with all his might!  Benjamin works incredibly hard to be understood, and as a result of his efforts (and that of his loving support network, spearheaded by his indomitable mother), his life is changing right before our eyes.  And it is impacting the lives of many others, as well.

For us, and especially Benjamin, 2016 has been an overwhelmingly good year.  2017 brings a huge transition, with Benjamin moving on to high school next Fall, so there will be much more to write on these pages in the new year…!

Enjoying the water park with his cousins and Timothy.

Benjamin and Adam after their turn, just waiting at the bottom of the slide for the Henry and Beth to arrive down the shoot.

‘Talking’ to his cousins before bed.

Oh my…has it really been nearly three months since I wrote the last post?  It’s not for the want of things to say.  We’ve just been busy, very busy but a good busy.

The summer flew by.  It really was a good summer. Benjamin spent most of his summer at home rather than spending all day at summer camp like he used to. He’s matured and I’ve matured too (in just taking things in stride).  He went to summer school two mornings a week and the rest of the time it was mom as recreation director.  We filled out summer with lots of math catch up with Kristen, working on him holding his own board, hanging out with his buddy Mitchell and just having fun (which involved many trips to the local beach).

Benjamin had his first sleepover ever this July.  Mitchell and he went to our local trampoline place, ate supper out, hung out at our place and went to bed late (Mitchell was so excited he never went to sleep).  They had such a fun time.  The word Benjamin used to describe it was ‘awesome’.

The highlight of Benjamin’s summer is always his annual trip to Ireland. We spent two weeks there this year and Benjamin enjoyed every second of it.  I truly believe that it’s his happiest place on earth.  I’m including some pictures of him on our trip.  There’s one picture of him communicating on the board while his cousins watched.. such a great picture.  He said to them ‘thank you for being such great cousins’.  While in Ireland he wrote a letter to his new penpal and I think he summed up pretty well why Ireland holds such a special place in his heart.  He said ‘I love to visit here as I have lots of cousins. They make me feel like a typical kid’.

Then we were back to school – 8th grade, Benjamin’s last year of middle school.  We are so, so excited for this school year.  Kristen was hired as Benjamin’s 1:1 at his school.  It’s just been a joy to watch these first couple of weeks unfold.  Benjamin is beside himself.  He has someone there with him all day who he can communicate with.  He has a voice whenever he needs one.  The bird has been released from his cage.  Or as his teacher put it ‘he’s finally in his own skin’.  We have a ritual that when he comes home from school each afternoon, I ask him how his day was.  He typically says ‘awesome or great’.  There will be lots more to come on that topic…

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We had a lot to celebrate this Father’s Day.  At the Autism Speaks Walk last month, one of the photographer’s captured a very tender moment between Jeff and Benjamin that truly captured the bond they have had since Benjamin was just a little guy.  He loves his Dad very, very much.  I decided to get the photo printed, one for home and one for work.  I told Benjamin about my plan a few weeks ago, showed him the photo and asked him to think about what he wanted to inscribe on the photo.  This is what he wanted to add ‘So glad you’re my Dad.  I hope you know you are my hero. I love you’.

I know Jeff loved his present and will treasure the momentum but I think his best Father’s Day present was the conversation he had with Benjamin on Friday night. A conversation he never knew was possible last Father’s Day weekend.  This week Benjamin and Timothy went to a summer camp sponsored by families who are forerunners to us in RPM. His best friend Mitchell, who inspired us to try RPM, also attended. The boys got home on Friday morning. Here is the conversation Jeff had with Benjamin when he got home from work on Friday evening: “What did you think of summer camp?” “I had a killer time” “What was your favorite part of the experience?” “Hanging out with Mitchell” “Were there any cute girls?” “There were lots of cute girls”. At this point he started to bite his arm, so Jeff asked, “How are you feeling?” “I am sad because camp is over”.

Father’s Day 2016

Father’s Day gift with personalized inscription from Benjamin.

Benjamin holding his own board

Jumping with the ‘girls’

Well, another month has rolled by since our last blog post.  We’ve been keeping busy and most importantly, moving along and making progress.  Benjamin finished 7th grade just this week.  Yikes, this will be his last year in middle school!  It was a great school year for Benjamin. We’re excited for even bigger and better things for 8th grade.

Since our last blog post, Benjamin has moved on to the next step with Mom and Dad.  He is now using the laminated board with us (the next progression after the 26 stencil board).  This is the board you’ve seen him use in the birthday message to Jeff.  Kristen has started working on him holding his own board! This is a big step towards independence.  It will take some time but he is determined to get there.  He’s also moved along with his teacher and two assistants at school and is on the 26 stencil board with two of them.

At Benjamin’s request and given his insight into his struggles to cope with his emotions,  we’ve been slowly increasing one of Benjamin’s medications (combined with other non-pharmaceutical interventions).  Benjamin has communicated that he is starting to feel less anxious. Today, he really wanted to go to the local trampoline place.  We had given up on bringing him as it always ended in big meltdowns which he has been able to tell us is because there are either too many kids or not enough kids (of course, something we cannot control).  So Jeff decided he’d bring him today.  Before he left, I asked him what we could do to make it be successful, he said ‘Make me take walking breaks every 10 minutes’.  So off they went. Lo and behold, it was a big success.  Jeff brought the board with him and communicated with him each time they had a break.  On one of his breaks he said that there were ‘attractive girls’ there.  About half way through, was the only time he showed signs of getting upset  and Jeff took him off and asked him what was going on, he said ‘I don’t see any chicks’.  He was jumping on the younger kids court so Jeff explained to him that he needed to move to the other court for the older kids.  He finished out the time there having a blast jumping by two cute teenage girls (here’s a picture, the girls are blurred out so I think it’s appropriate to post).  My, we do have a teenage boy in the house!

It’s been a while since we wrote in the blog…sorry, it’s been busy…Benjamin was on his second Spring Break (Timothy’s  and his Spring breaks do not co-ordinate) and we were in  entertainment mode.

As part of Benjamin’s Language Arts coursework, he had to read ‘The Book Thief’.  Many of you probably saw the movie. The book is even more powerful.  Between the staff at school and myself we read the book to him – he sits and listens while he’s coloring, doing chalk or whatever.  We finished the book over his Spring Break (poor child, he had to endure me crying my eyes out as I read the last part of the book to him). The class assignment was to write a five sentence summary of the book.  He and I tackled that together.  I was so proud of him and I…we’ve come a long way.  Here is  his summary (credit goes to brother Timothy for typing it up for us).  This is all his work!  We even made edits.  He drafted the paragraph (spelling on the board what he wanted to write) and then I asked if he wanted to make changes.  He told me where he wanted to make them and what he wanted to add.

As all are you are more than aware (thanks to us bombarding you with social media posts), today, April 2, is World Autism Awareness Day. We had a fun day. We went to a local amusement park and wore our Light it Up Blue shirts. Benjamin held it together phenomenally (and we say that only because we know how hard it is for him to do that).

As was so evident from my last post, autism awareness is so critical and we’ve benefited from it directly.

I have to admit, I’m a little giddy this evening. Do you know why…because Apple, that company who manipulates most of our homes, just came out with videos today that promotes autism ACCEPTANCE…it’s a video of a boy who communicates through typing (on an iPad of course) that started with RPM – note the rpm boards all over the table.

I’m giddy because we’ve a fight to fight. We now have to approach a high school district (one of the best in the country) and prove ‘presumed intelligent’…’not speaking does not mean not thinking’.  I feel like we’ve got an ‘Ace’ in our back pocket.

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Here’s the link:

Here’s Apple’s description of the video: ‘Autism Acceptance Month acknowledges that every autistic person’s path is unique. For Dillan, the dedication of his loved ones, years of hard work and his iPad made a big difference in how he connects with others. Hear Dillan, his mother and his therapist / communication partner share that journey.’