Funny Things: A Ben Update

I have been terrible about updating this blog.  You can blame Facebook, if you’d like.  It’s a pretty good scapegoat for most of my inadequacies lately.  This isn’t really even a “real” blog entry.  It’s an excerpt from an email I wrote to our RDI/HANDLE consultant about how Ben is doing.  We’ve been on a hiatus from RDI, not working on specific goals, but keeping general principles of living RDI in mind.  During this period, we’re doing a full-on HANDLE program with Ben, instead.  HANDLE uses gentle, simple activities that strengthen underlying, weaker body systems that ultimately support Ben’s neurological functions, physical, emotional, and cognitive development.   Strengthening and regulating those systems (vestibular, visual, tactility, visual-motor, auditory processing, etc. ) are what drives Ben’s progress.  Here’s what we’ve been observing lately:

Ben is doing really well with lots of things, not as well with others.

We’re seeing definite improvement in overall stability and ease in using his body.  Things that really showcase this for us are
1. watching him bowl (no longer just plunking the ball down, but actually swinging the ball, twisting his torso, bending his legs, etc.),
2. swinging on the swing (not just moving legs in and out, but leaning back and into the swing to propel his body forward),
3. running (much faster than before, definitely having ‘air time’ with both feet off the ground at the same time during his stride),

4. riding his horse (he adjusts his body–not all the time–when he slips sideways in the saddle and will be learning to use the reins soon to guide his horse.  He also loves to trot, which is a fairly quick, bouncy walk.)

5. writing and drawing (can write all the alphabet letters with visual/verbal scaffolding, has a new love for drawing CARS.  He always has a story about the car he is drawing, even if it usually has the same components–name of car, the car’s features, and of course the SMOKE he draws while making car noises.  If I suggest something else, he’ll agree if he can incorporate it into his car drawing.  He’s much more confident at attempting different things and uses a more mature pencil grip–not fisting, but using fingers)

and 6.  boogie boarding!  This is the newest thing for Ben.  He’s always loved watching other kids “surf” while we’re at the beach and actually asked me if he could do it the last time I took him by myself with his siblings.  So, this past Saturday when Mark was with us, we bought a board and Ben jumped right in and LOVED it.  He figured out how to do it just by watching others, and with some verbal/visual help from Mark realized where on the board to hold on for maximum lift and speed.  Crazy!

The things that we’re not seeing changes in (and are driving me crazy) are

1.  eating with his fingers
2.  dawdling and getting sidetracked when he is expected to get his shoes, get dressed, pick something up, put something away, etc.
3.  freaking out about nail cutting (fingers and toes) and not as intensely, but haircuts are still a challenge
4.  getting out of bed every night to get in bed with Mark and I

5.  pronation is still pronounced, not sure how to judge improvement there other than increased mobility as mentioned above

6.  just recently, I noticed that holding hands with other children is something Ben is very tactilely averse to.  Holding an arm was an okay alternative and holding an adult’s hand is okay, too.

7.  not sure if HANDLE would address this or not, but Ben definitely does not distinguish between a purposeful and accidental action, in terms of being hurt by the action.  He has this need for “revenge”.  If his toe is accidentally stepped on, he will not rest until he steps on the offender’s toe.  He used to avoid touching or being touched by the baby, but now she is free game for pushing, hitting, kicking, etc.  He doesn’t seem to understand the concept of intent.

8.  anger is also his “go to” emotion when he disagrees with something.  He’ll yell “NO” at kids who ask him to play and really holler at Will when he is not interested in interacting with him.  To be fair, Will is often an instigator of conflict between the two, but just as often he is not, but gets yelled at, or physically hurt anyway.
Ben is using language more than physical violence, though, to deal with the anger lately.  He can actually be quite creative.  “I’M AN ANGRY MONSTER AND I’M GOING TO BITE YOUR TOES OFF!”  “I’M GOING TO LOCK THIS DOOR AND RUN AWAY AND YOU WILL BE LONELY!”

One of the best things we’re seeing emerge with Ben the past few months is a social sense of humor.  He’s always laughed at things that privately make him laugh or are amusing to him auditorally, but recently he’s enjoyed watching America’s Funniest Home Videos and laughs when people or pets do unexpected things.  Such a great sound to hear him laugh along with everyone else, knowing he ‘got’ it.  There is a lot more giggling with his brother and occasionally his sister, too, over ‘private’ jokes and shared experiences.  He’s also been “making jokes”, although I’m sure they’re not exactly intentional.  I’ve got three examples:
1.  While cleaning with me the other day (he sprays, I wipe), Ben starts to sing a la ‘Bob the Builder’ “Bob the Cleaner!  Can he clean it?  Yes  he can!”
2.  While talking over dinner about how pilots have to go to flying school to get their license, Ben comments that he has a “horse riding license”.
3.  After asking him to stop touching things in the grocery store for the millionth time while shopping, he looks at me and says, “but touching is in my blood”  This is from a movie where the actual line is “racing is in my blood”.  Cracked me up.

So, there you go.  A Ben Update.  With stories and  photos to boot.

RDI Update

It has been six months since we started Ben’s RDI program.  (For those who don’t know what I’m talking about, you can catch up here, here, and here.)  We traveled to Jacksonville, FL for his bi-annual re-evaluation last month.  We keep in touch with April, our RDI consultant, through bi-weekly phone conferences, email and video clips of our progress.  We knew going in to the re-eval that there had been some remarkable progress, that Ben had experienced significant growth.  And, of course, the ‘numbers’ backed that up.  His developmental test scores all showed improvement.  Now if you know me at all, you know that I don’t believe in numbers.  Meaning, data in measurable units has it’s worth, but it’s not very significant worth to me.  I prefer to evaluate growth and change through more holistic means.  For example, I try not to weigh myself very often, but I sure notice when my jeans feel too snug.  RDI, in all it’s wisdom, also does not rely on numbers.  The tests are given (observation rating scales) and scored, but mostly for show.  The truest gains in Ben’s development have been so natural, so organic, that we barely noticed them as they occurred.  Much of the week of re-eval, we spent remarking, “Oh yeah…he *used* to do that, didn’t he?”  It is amazing to me how much you can forget, and how easy we readjust our idea of “normal”.

In addition to the RDI re-evaluation, we had April screen and develop a HANDLE program for Ben to address his sensory difficulties.  HANDLE is the Holistic Approach to NeuroDevelopment and Learning Efficacy.  We’ve been using a general program developed for children on the Autism Spectrum, but now we have a program tailor-made for Ben’s specific needs.  Like RDI, this is a family-based therapy and it focuses on the roots of Ben’s sensory challenges by gently strengthening the neurological systems that support how his body works in the world.  And again, the gains are so subtle and natural that we barely notice them until we look back.

Some examples of changes we’ve experienced in the last six months are:

• Expanded language.  THEN: I noted back in March that Ben’s language seemed to have plateaued out at 2-3 word phrases with memorized scripts or ’sound bytes’ that were repeated over and over in increasing volume until you replied with your scripted ‘line’.   NOW:  Scripted language is an occasional to rare occurrence.  Ben doesn’t always use longer phrasing than before, but what he does say is much richer and more dynamic.  Almost everything is novel–created for the moment.  He comments, asks questions, answers questions, reflects on past events… It is truly amazing.
• Using pronouns.  THEN:  Ben had a really really hard time with the you/me thing.  For example, he’d say “Mama, hold you.” when he wanted me to hold him, or “you want more” when *he* wanted more of something.  We’d repeat the right way to say things, withhold wanted items until he repeated it correctly over and over, but he never caught on.   April promised it would come naturally with RDI and encouraged us to let it go.  NOW:  With his new understanding of himself as a person, Ben uses correct pronouns almost 100% of the time WITH NO DIRECT TEACHING.  Do you know how many children I taught with “pronoun goals” on their IEPs??  Amazing, again.
• Eye contact.  THEN:  Ben would give eye contact, but only if he recognized you as ’safe’.  It took three days before my mom got an engaged look from Ben once when they came to visit.  He also didn’t use eye contact for gathering information–facial referencing, it’s called.  NOW:  Ben shows a great understanding of facial referencing and it’s importance to connectedness.   He even seeks out other children in small groups by trying to establish face to face contact!!
• Social play.  THEN:  Ben seemed to like other children, but would keep a safe distance and just watch.  He engaged mostly in solitary ‘play’ with objects.  NOW:  Ben LOVES playing with other children, seeks them out, and attempts to INITIATE interactions without any direct intervention of what to say, how to move, preparedness of ‘what might happen’.  He is not without quirks, and is not ‘typical’ yet, but he has gained more in six months in this area than I ever imagined.  I rarely saw social gains occur this quickly in the classroom, and NEVER in a child on the Spectrum.  School was every day.  We have playgroup once, maybe twice, a week.
• Bits and pieces.  Ben has overall less anxiety.  He can now run, jump, and blow bubbles–all things that were very difficult and did not seem to improve no matter how much we practiced before.  He can dress himself, wash his hands, and draw a face–all without my ‘teaching’ him.  He laughs at jokes, reminds me of things I forget (seatbelt, keys, where I put my phone), fights with his brother (No, Will!  That’s mine!), used pretend play, and wants to do everything HIMSELF.

This is just a snippet, of course.  It doesn’t really give you a good enough picture of the bright, clear-eyed, quick-to-respond, happy little boy that has emerged from our Ben.   We can’t wait to see what’s coming next.

I do have to give a shout-out to Elaine Gottschall (RIP) who authored the Specific Carbohydrate Diet.  Healing Ben’s gut and leveling out his digestive issues, including night pain that interfered with sleep, has been equally beneficial in treating Ben.  So, huzzah for the trifecta–RDI, HANDLE,  and SCD!