Disney for a Day

This is a backtrack post.  We took a day trip to Disney World  back in September while in Jacksonville for Ben’s RDI re-evaluation.   I talked Mark into the trip using my powers of persuasion.  Mostly, I just explained how CHEAP this day was going to be.  “Cheap would be not going at all,”my love reminded me.  So, I revamped my plug by explaining how much cheap-ER this trip will be than all. other. trips. EVER.    Captain Frugal is intrigued.  He knows what sort of magic a bargain shopper like myself can create.  So I laid it out for him like this:

1. Military discount tickets, non-refundable option (turned out we were also given the FL resident discount–yay.)
2. Ella Rose and WILL are both FREE (under 3)
3. no Orlando accommodations needed, as we were already staying at the awesome oceanfront NavyLodge in Jax
4. one day–one park (Magic Kingdom)
5. Our wacky diet (SCD) makes virtually all over-priced park food forbidden.  We packed our own.
6. The kids will LOVE it.  (They did.)

As an unexpected surprise, while eating our packed lunch under a tree, a park employee approached us.  I thought “uh oh, we’re busted for bringing in our own food”  Even though I had the whole food allergy speech ready to fire, I was not looking forward to a conflict.  As it turned out, it’s the Year of a Million Dreams (or something) and he chose our little family to receive one.  Yippee!  He figures out how many are in our party, gets out his little form, then asks which “dream” item we’d like to have–

Five free popcorns?  Um, no.  (SCD illegal)

Five free ice creams?  Wah!  No.  (Really SCD illegal)

Then five free sodas?  Strike three!  So sad!

I tell him we can’t have any of those things, he shrugs and says, “you can always get water.”  And, so, we did.  It was a very hot day, and we had run through our own supply fairly quickly.  The boys got a kick out of the ‘grown up’ bottles, and I splurged and bought them Mickey straw toppers for their one souvenir.

Our only other purchase was a set of ears for Ella Rose (13 bucks!).  The grand total for the day was twenty-two dollars.  Not bad!

Less the gas money, of course.

And 12 dollars for parking.

And staying one more night at the NavyLodge.

And the stroller I bought at the resale shop to avoid the rental fee for a Disney stroller (30 bones they charge!)

And the fast food we stuffed our faces with on the ride home while the children were sacked out in their carseats…

Ah well.  So, maybe not the cheapest trip EVER.  But pretty darn close.  Pretty Darn Close.

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!