RIP....

That is the sound of the ripping of duct tape.  I know I just started this blog with a whole 4 or so posts.  Each piece of duct tape has been essential to Chuck's growth.  Well- at least we thought it was helpful.  But recently, we have ripped off two pieces of duct tape.  The first is RDI.  (The second will be in another post.) I started this blog with 101+ things we have seen with RDI and each one is still valid and true.  I do highly recommend RDI for those with autism.  It is the BEST thing out there.  Better than Floortime.  Certainly better than ABA.  There may be a place or two for those but RDI deserves a look-see if you happen to be here because of RDI.

So why did we rip off that piece of tape.  Simple.. it was time.  Our decision happened so quickly.  It seemed like we quit within the span of a week but looking back I guess it wasn't THAT quick.  I started getting anxious when I'd talk to our RDI consultant.  I'd have to put on my diffuser with essential oils and pray just to calm down before an appointment.  Why? I don't know.  I think part of the reason, and also part of the reason we paused RDI was because we could not do this 100%.  And ideally that is what you should do,  but life is not ideal.  I began to feel that if I couldn't do this 100% we would see no growth.  That is probably not the case but it is my perspective and I was able to do less and less of what was asked of me.  So while we made the decision in the span of about a week, it had been growing internally for me for awhile.

Second... Chuck is now 14.  A 14 year old boy..and autism... and kaboom.  Our consultant has always said that Chuck is unique.  No autism kid is in a box but Chuck ventures even outside of that.   I think what we were doing with RDI just wasn't working with the present circumstances.  I would love to talk to other parents with hormonal teen boys who do RDI to see how it works out for them and how their consultants handle things.  Because what worked well at 10 years old was not working at 14 years old.  He is becoming an individual and needs to express that.  What we were doing.. just wasn't working.  

Third... Husband and I came to the same conclusion prayerfully at the same time.  It was the same feeling we had when we decided to start RDI, strangely enough.  We were in agreement.

So what are we doing now?  I'll save that for another post but a whole lotta nothing...  Especially since November.  (Well there was a big additional piece of duct tape but that is another post.)

25 cents...3 am thoughts.. and life.

3 am.. was not sleeping and my mind wandered back to when I went to Aldi's a few years ago.  I had never been, and walked up to a lady thinking I could help her out as she was taking her cart back into the store.

She just about beat me with her purse.

If you have been to Aldi's you know the drill.  You pay a quarter, you get a cart, you return a cart, you get a quarter.  I did not know the drill.  I was embarrassed and totally did not understand the woman's reaction until I went to GET a cart (and I didn't have a quarter with me!)

I feel as if Chuck goes through life not knowing the drill and he has difficultly focusing on the "important" stuff to learn the drill.  How do you learn that you need quarters for carts at Aldis??

A few weeks ago, we went for ice cream.  So thankful for the plethora of vegan ice cream options because milk-free means we can enjoy.  It was soft-serve/self-serve.  That was a trick in itself but then there was a toppings bar.  Chuck went to grab strawberries with his hand.  I said, "use the spoon."  He went to put the spoon in his mouth.  <<sigh>>   I might add at this point that Chuck has above average intelligence.  It has nothing to do with IQ.  He had not experienced or noticed HOW to do this.  (The ice cream was delicious.)

 I think all of life is that way for a spectrum kid.  They need to learn how to observe and it comes much slower than for the 'typical' kid.  They don't need to be taught how to do things.  They need to be taught how to learn and observe and follow.  You can't TEACH all of these things.  You can't teach:

-- use the spoon at the ice cream bar and no don't put it in your mouth.
-- when you take a cart back into the store there will be a curb you have to go over but they have ramps to make it easier
-- it isn't appropriate to go to the back room of the juice bar where they are making the juice
--when someone says, "do you want to go for a ride?" you have to answer.  You don't just get in the car.
-- you don't talk to anyone and everyone in your path.
-- you have to pay for items in a store.
-- kitties bite.
-- not everyone likes to be petted on the head. (Talking humans here... not cats.)


  This is why RDI works so well.  It teaches dynamic intelligence and grows a child so that they can learn from others.  First trusted guides and moving out from there.

In any event, it is difficult and challenging to go out into the world and LEARN and I would love to tell you we have it all figured out.  But we don't.  I don't LIKE to go out into the world all the time.  Some days I am brave and we do venture out.  Some days we stay home.

Hello Big World

In RDI one thing you eventually have to do is leave the house.....

It is one thing to achieve an objective while at the house, it is quite another to try and achieve that out in public.  For one thing, when you have a kid on the spectrum you don't know how they are going to ACT.  (And that leaves uncertainty... for mama.)  And when learning a new thing, you by definition aren't going to be great at it.

One of my favorite books is Dancing with Max.  In it Emily Colson talks about how she decided to just venture out.  She wasn't going to stay inside anymore.  It is in my top five.    It is raw and real... and I recommend.  But I digress.  I am not quite 'there' mentally to want to 'venture out.'  But it is still a requirement.

The issue is, where do you go?  The lights, the sounds AAAAAAAHHHHH!!!!!!!  Our consultant told me, "you have to practice these things IN PUBLIC."  <<Sigh>>   In April, Autism Awareness Month, when we ventured out I'd make a funny about it, if only to myself and say, "I'm just making people aware..."  

Well God has been good in bringing to mind some really cool places to go.  Because I wasn't going to take him to the grocery... or Wally World.. or anyplace with that much commotion.  So here is a list of places we have visited.  Think mom and pop.

A fresh juice joint.  The only people there most of the time were us and the store worker and one time the owner.  They now know my kid.  And are not phased.  And he loves fresh juice now which is a BONUS.  (Including the ones w/ kale!)

A bakery.  We chose GF bakery that had zero people in it.  Again ample space to navigate what was going on.

A wheatgrass place.  This is basically an empty room with a desk in front.   You ask for what you want.. and leave.   (You would think not much could go wrong but...  )

A friend's house.  Especially if they do RDI are or familiar with it.  Otherwise a good friend who will do what you ask and help you 'set the scene.'

A SMALL natural heath food store.  These can be crowded but we have a really high priced one that very few people visit.  So I just pick a few choice items when I go there.   Do not do your weekly shopping during these trips.

The Post Office after hours.  Many post offices have front areas that are open 24 hours to go in and mail things.  This can be a very good place to test stuff out.  We have been there twice.  Once when there were other patrons and another time when it was empty.  This was a surprisingly good 'bridge' location to work on our objectives.

An ice cream shop (on a cold rainy day.)  We have one near us that is self serve soft serve and they have milk free options.   In addition they have a toppings bar.   (I really should be more thankful for that.)  It provides more "opportunities" than those above with all of the navigating of choices and how to work things.

In each of these places things did not go perfect; especially the first time out.  We had to go back, revisit, try again.  And we are continuing to work out our objectives in the "out of doors."  As you think of settings of where to try your objectives, think outside the box.. outside the store.

I think in the next few weeks I will tell you more about what we have done in each of these places.

Go Fish, Crazy Eights and Tears

We have been playing cards!  Whippy Skippy I hear you saying.  But it has been FUN!  And Chuck asked me to play again!  This has not happened before.

Above are the cards we used...perhaps that had something to do with the attraction.

I started analyzing our play, (as all good crazy intense RDI parents will do), and was thinking about the differences between RDI and other therapies in relation to our card games.  You can TEACH a child to enter into a game of cards but will they really PLAY WITH you if you just TEACH them?   Is it FUN if they mechanically go through the motions?  What makes a game enjoyable?

RDI takes a different approach with objectives.  Things like teaching a child to play cards is NOT about teaching a child to play cards.  It is about finding opportunities to fill in the gaps of child development and using those as frameworks.  When playing games there are many many opportunities for waiting... for mistakes.. for mis-calculations.. for potential meltdowns.   These were all times when I was able to guide Chuck.  (Even a year ago the 'framework' of card play would have been too much to handle.)

Of course when you initially teach there are many words used, at least for me.  But in general you can play a whole game with no words once you get the rules down.   (RDI is big on non-verbal.  As is child development!  Watch some kids at the playground.  They don't talk.  They play.  Especially if they are boys.) I found that Crazy Eights was actually a much easier game than Go Fish.  The rules are actually less complicated, or perhaps the pattern of play was simpler.  But again, the experience is not about the rules.  It is about the back and forth.

And we had so much of that.

There were mini-opportunites for disappointment when there was no match.  There were a tad bigger disappointments while playing crazy eights when he had to draw 12 cards to get a match.  This is where the tears, if only internally, came, on MY part.   What did Chuck do when he had to draw all those cards?  He did NOT melt down.  He.... laughed.  HE LAUGHED!!!!  There was a bit of a disappointed frown under the laugh but it touched his funny bone.  (I don't even think we have 'mastered out' an RDI objective to this regard so I will have to remember this when we get to it.)  You can't TEACH that.  "Chuck.  You must not have a meltdown when you are loosing.  You must maintain your composure.  You must laugh at yourself."  Nope.  Can't be taught.  I am still a bit weepy thinking about this moment.

And.. We.Had.Fun.  It is a rare thing where we have FUN doing something together.  We do chores, we do work, we go on walks.  But it is hard to find SIMPLE fun things to do with a teen.  Most of the objectives we work on with RDI are things that a one year old has mastered!  But a teen does not want to play peek-a-boo.  And I did not even set out with the card game to achieve an objective.  I just wanted to 'see what happened'.

In any event..  this is a picture of our day the past few days.    (Oh and what started this all?  I am cleaning out our hoarders room that is closed off all winter.. the one where I just dump stuff.. and found decks of cards.  Each day I am taking something out of that room that we have not used and .. well.. using it.  Novel concept.  Can you spy Chuck in the photo?)

100 Things

One piece of Duct Tape we have applied to things over the years is RDI... It stands for Relationship Development Intervention.  The internet is chock full of pages for ABA and Floortime as it relates to autism remediation but it is difficult to find appropriate information on RDI.  You can find a bunch of links over at Kathy's Blog, who is both the mom of an autistic child as well as an RDI consultant.  She provides rabbit trails to other areas on the web that discuss RDI and quite frankly, she 'gets it' because she lives it.  We started 'fooling around ' with RDI many years ago but began formally with a consultant in the fall of 2010.  I can't express the importance of not only working with a consultant but working with the RIGHT consultant.  She is my Yoda...  

A few months ago I began contemplating the improvements we have seen since starting RDI and I began just keeping a list on my phone whenever I thought of something new.  It amazed me all that we have seen as thoughts of how it "used to be" streamed through my mind.  We have done a few other remediations including some medication however one needs a GOAL in order to achieve something.  And RDI, via our consultant, provided us with those goals... slowly.. surely.  Some of them lasted several years.  It is a marathon.. not a sprint.  

Some have a common theme and may be listed several times in various ways.  The "main idea" of what we have achieved is that change can not only be tolerated but can be good.  One of my favorite TV preachers says something along the lines of, "you aren't where you need to be but thank God you aren't where you were."  And thank God indeed.  So thankful He guided us to RDI and to our mentor.

Here is the list:  

1. I can make breakfast inside, while Kid is outside, with the cats or just walking around in the front yard.  (He doesn't need me to supervise 100%.)

2. I can leave the back gate open on the fence and he will just stay in the backyard. (Versus wandering to the neighbors house.)

3.  He can be told to just go take a shower.. and he does it.

4. Grandma and Grandpa can babysit him for extended periods of time.

5. A selected few others can babysit him for short periods of time.

6. He carries on conversations in the front yard with the neighbors without my help.

7. He doesn't scream out the window 'conversations' to passers-by (much.)

8. We are volunteering at Petco.

9. He no longer exhibits physical violence.  Even though he will say he feels like it he will tell me and then we will do something about it.

10. When he is the care of another person, for work or for respite, I don't care as much how they do their job (as long as it is done.)  I have relinquished responsibility.  This is possible because of growth on both our parts.

11. He will eat food that has certain things added to them… and mixed up foods such as rice and peas… rice and cheese in eggs.

12.  Moved the furniture.  (This deserves it's own blog post.)

13.  Will sit on new furniture.  (There was a year gap between  # 12 and # 13…)

14. Will wear pants with zippers.

15. We enjoy watching some of the same shows together.

16. He can attend a co-op class with a buddy (almost.)

17. Can play at a park with a buddy unassisted by mom when not crowded.

18.  Can play at a park with a  buddy unassisted by mom when park is crowded.  (Again.. a year between #17 and #18.)

19. He can leave some things uncompleted.

20. Changed the front mat… he complained but left it there.

21.  Many small and larger changes are "allowed" where they were not previously (except under great duress).  Sometimes there is small whining but no meltdowns.

22.  I went away for a weekend with no fuss.. no muss.  House was even clean when I came back.

23. Tell him to vacuum and he does it.

24.  Tell him to do many other chores and he does it. 

25. We really enjoy reading together and enjoy sharing some of the same points of a book

26. Takes a bit more direction all the time on things that were rigid to him.

27.  I can take a shower while Kid is watching TV.   (I don’t need to constantly watch over him.)

28.  I can drive to the corner to drop off a car while Kid is home alone for 5 minutes.

29. We eat together.

30.  Eats more and varied foods including salmon.

31. Will use different bowls, spoons etc.  Even to the point of using a coffee cup for his juice and an ice cream scoop for a spoon when all the other dishes are dirty.

32. We had a great day when we lost power. 

33.  When another child comes up to tell him something at a museum he listens and has a conversation.

34.  No longer .. Rarely.. flips the bird at our RDI consultant.

35.  Does routine / learned chores easily and willingly. 

36.  Trash talked with the neighbor regarding rival football team.

37.  Is an incredible writer.  (Is this because of RDI?  Probably not but it is a truth so I have to note it.)

38.  On Facebook

39.  I don’t have to stand behind him in group pictures to get him to behave.  (Including Halloween pic with over 200 people.)

40.  Will SMILE when I ask him to for pictures with Grandma instead of insisting on being goofy.

41.  When he has a meltdown it bothers me.. not because he is having a meltdown but because it is an oddity.

42. When I bring coffee or water to a place where there is a chance of spilling on his stuff, he no longer wigs out.  He just asks me to be careful.

43.  Tried skyping with a buddy

44. Talks with Grandma on the phone.

45.  Loves to facetime

46.  When he has an appointment at "computer time" this no longer bothers him.  (This was a “10 minutes to Wapner" thing.  He HAD to play computer at wake up and 6 PM.  It started as a reward.  Again this will be a separate blog post.)

47.  Turns down the volume when asked without resistance

48. Cheats.. and I believe him.

49.  He is very funny.  (example.. from today.. “Tell me you didn’t erase your history.”  …  response: I didn’t erase my history.”)

50. Takes a punishment like a man. 

51.  Accepts help on homework and sometimes even ASKS for help. 

52.  Rarely gets upset when he gets something wrong. 

53.  Will initiate high fives.

54.  LETS me watch TV with him.

55.  Gets stuff wrong on homework and doesn’t get upset.

56. Does school work ‘nicer.’ More compliant.

57. Husband takes kid places.

58. Joke appropriately… a prankster.

59. Uses puns and word twists appropriately.

60. Plays board games and it is fun.

61. Played MONOPOLY!

62. Walked with a peer just a few years older around the block.  No safety concerns.  (When we started RDI, I had to hold his hand and be with him.. that led to me giving him a few paces lead.. and now he can go with a responsible buddy.)

63. Helps unpack groceries the way I request.  (ie: So the eggs don’t get broken.)

64. He gets my attention non-verbally

65.   I can get his attention non-verbally.

66.  He asked me what was wrong.  Thought I was thinking heavy thoughts.  (And I was.)

67.  Compassionate when I am sick.

68. Turned around to wait for me when we were walking.

69. Kid mentioned MOVING!!  (The only drawback being our neighborhood cat..)

70. I accidently ripped his UglyDoll Calendar and he didn’t have a meltdown.  He was sad but OK with it.

71. I accidently erased one of his perma-saved shows on the DVR and he didn’t meltdown. He just rolled with it.

72.  There was no 2014 UglyDoll calendar and he adjusted by getting a kitty one.

73.  Asked him to take out the garbage and he just trotted downstairs and did it.

74 Not adverse to making his own food.. made his own sandwich.  (This one is still a bit of a work in progress.)

75 .  I took things off the wall in the living room and he didn’t notice or care.

76.  We ran out of potato chips and he didn’t get wigged. (He has one small bag.. daily.)

77. Didn’t NEED to play computer before going to Petco (an activity he loves.)

78. Didn’t NEED to play computer before going to an audiology appointment (something he doesn’t like.)

79.  Put up Christmas tree together..and it was fun.  Just like in the movies when a family puts up the tree together.  (almost.)

80. Didn’t NEED to get dressed on Christmas morning before coming down. He was OK with pajamas on Christmas day.

81.  He was toying with us / joking during Christmas.

82.  Did a 90 minute speech eval which we do yearly. Only a small five minute break was needed.

83. Audiology appointments have gotten progressively better.

84.  Playing “people” (pretend) is less static.

85. Did Legos TOGETHER.  (Still a bit of a work in progress..  It is not perfect but he joined in when I started.)

86.  Wore hearing aid that he didn’t like.

87.  LIKED a new hearing aid.   This is a significant event for us.  It will be a separate blog post.

89. New foods.. I know I listed before but this is such a huge area.  Beans,  greens in smoothies, chicken on a bone, taquitos, brussels sprouts…They aren't always finished but he used to Helen Keller his food across the table.  

90.  We can go to a friend’s house (child is 3 years younger) and they play together without any interference from mom.

91.  We go to an annual park event.  Year 1: I had to be with him all the time.  Year 2:  I had to go back to help w/ interaction often.  Year 3:  I sat on the sidelines and chatted with friends.

92. Closes the bathroom door

93.  Remembers to change clothes. (Mostly.)

94. Desires to shower more often.

95.  Wants a girlfriend.. to get married.. to have kids..  has a plan in his mind to get there.

96. This one is a mom change:  When people give kid a condemning look when we are in public, I laugh instead of getting angry. Mostly.

98.   Stopped cussing at our RDI consultant. 

99.    Wrote RDI consultant a nice Birthday card.  (They share a birthday.)

100. Sold our van!  (He was very tied to it emotionally.  I was tied to it emotionally!)

101. Got new fabric on dining room chairs.  He was NOT wanting it to happen and boycotted the chair.  But only for a day.  Please keep in mind that when we moved the furniture in the living room he would not sit on the couch that was in a new location..for a FULL year.   

102.  I left to go out and at 5:15 pm asked him, “Before you play your game at 6:00 please take the shirts out of the dryer and lay them flat.”  When I came home at 9 pm I expected said shirts to be wrinkled in dryer.  They were not.  They were laying flat on the floor.
103.  His peer buddy who is about 5 years older than him noted to his mom that he has seen changes in him over the years.
104.  Instead of believing fantasy is real, he says, "I sure wish fantasy was real." (Don't we all?!?!?!)
105. Is OK with grading on school work.  Does not NEED to get 100%.
106.  Takes initiative instead of control.
107.  Haircuts are uneventful
108. Dentist appointments are uneventful
109.  One year old nephew came for 4 days and 3 nights.  Messed with his routine including bedtime where he could not go in his regular drawing room.  We had a houseful and he did incredible.  
110.  He's making popcorn by himself (with a tiny bit of oversight to make sure there are no burns.)
111.  We watch TV shows together and have a good time.  
112.  When watching TV, he "gets it."  And then makes appropriate non-verbal gestures to share what he has understood.  And we laugh.

Bean Dip

Why the title for this blog??  Because 'passing the bean dip' is a phrase used when nothing else will work.    It is reserved for those times when persistent detractors pummel and criticize you for information on your life choices--- especially as they relate to parenting.

• Breast or bottle feeding
• Staying at home.. or working
• homeschool.. public school
• attachement parenting.. co sleeping.. etc.

If you add on special needs which we happen to have in this house, you have a whole new variety of criticism come your way.

• Sign language.. yes or no?
• autism therapy?
• Do you make the child sit and work at the age of one year or do they get to do play therapy? Or perhaps there is yet another remediation.  (Yes.. why yes there is..  )

When someone comes at you with their opinion on what you are doing (with the assumption you are wrong), you can tell them you have made your choice.. and to pass the bean dip. Because these sorts of conversations could take place over a party table.  (That is if you could find a babysitter to attend the party.)  But they happen at the park, in the carpool, over the phone.. and if you say "pass the bean dip" in those situations they might just think you are crazy and shut up.

Still don't get what I am talking about?  Here is an example applicable to homeschooling. 

Why duct tape?  Well because duct tape fixes everything.  More on our versions of duct tape in later posts.