Life Lessons from Jillian

I don't think one should take all life lessons from Jillian Michaels but she said something on Losing It this week that struck a chord with me:

When you give yourself credit for something and take pride in what you do, it doesn't mean you think you're better than someone less. It just means that you value who you are and you send that message to the world.

This gels and seems to be just one more confirmation in many areas of my life that are melding together. It also seems to meet up with the previous post on The Road Not Taken. It is difficult to take pride in something that you are doing when it is not apparent to others that it is the 'right' way to do things. Questions abound, people tell you that you are intimidating..when in fact they are the ones that are being intimidating whether they realize it or not. Not all the choices we have made have been easy..homeschooling, RDI, biomed, implant. And they look 'different' to outsiders. I have been trying to 'justify' RDI to quite a few folks this week. People say that I am using technical language because it is so foreign. Slow down your speech, slow down your actions, wait for the child to answer, WAIT for them to look to you. Sloooowwwww.. .slooooowwwww.... waaaaiiiiittt.....waaaaiiiittt... That's it. That is MUCH of what we do. You can do that in ANY activity. It does not matter what it is. I don't understand how that is so confusing. We don't script, we don't do charts, we do very little behaviorally. We set limits, but work with Andrew's developmental age and we use daily activities to accomplish the objectives we are working on. The activities stay the same- but the objectives change.

That is basically it. We are taking things developmentally. We are not working with Andrew at at forth grade level. When I tell people that Andrew is a 12 month old developmentally I can hear over the phone, people's eyes roll in the back of their head. Seriously. They don't GET it. Because they are constantly trying to put putty in the holes instead of breaking apart the whole stinking bridge and starting from scratch. Putty starts to leak after awhile. And breaking will happen again. Maybe not until college or real life. But when you build a life around static situations, you learn to BE static. Yet..i was told more than once today..that is what parents want. Ok..so be it. We are taking the road less traveled. But we are breaking apart the bridge (and there has been some serious breakage around here over the past 6 months) and we are BUILDING ON A STRONG FOUNDATION! I mean that from a spiritual, emotional and physical sense. (I could write a whole other blog entry on my own spiritual breakage but that would be to intense I believe.)

So I don't think we are better than anyone else but I do value what we are doing. I don't mean to be flip truly but RDI, although 'hard' to DO because you have to do it yourself (as a parent with a consultant), is just basic child development. It is about being present and available. I am just tired of the uphill battle in a land where people have out their putty knives.

And that has made all the difference.....

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference.

Robert Frost

Blog Walk

The new TOS Crew is blog walking 10 blogs at a time of those that are on the Crew. I missed week 1 and 2 but here is week three. There are some very fun blogs in here. Don't forget to subscribe to the blogs while you are there.

1. All American Family

2. ME..Growing Fruit

3. Learning to Teach

4. Codex Young Author's Publishing Program

5. Stairsteps Homeschool Academy

6. Kingdom Academy

7. Living Sola Gratia

8. Wynfield Christian Academy

9. The Cow Queen

10. Peace Creek on the Prairie

The mind of Andrew....

We have regular "Andrew-isms" around here... he is the pun master and joke teller extraordinaire. He also asks some great questions. The past few evenings we have been working on a geography e-book that I received for review from TOS. Andrew says, with all sincerity, "mom, why do we have to know this?" And I do not have a good answer. I told him that it is 'important' to know geography. I think we may have to 'dig deeper' to connect the dots for him. It is funny- on math and handwriting, he balks, but he never asks 'why.' He gets the connection. "Just because I said so" doesn't cut it with him. And I like that about him. He will never be one to run with the crowd and give in to peer pressure.

There is a fantastic story about an autistic girl (embedded below) that has been listening, and thinking for YEARS and now has a voice by typing out her words. We assume things about people and those on the spectrum..that they all think like us (or don't get things at all). But it is interesting that Andrew seems to get better than most that PERSPECTIVE difference is "OK." I blogged about that a few days ago. This girl in the story is precious. She has quite a little sassy personality on her. She just can't get it out! Well, she couldn't but now she can. I am quite sure that many of the things she has done over the years have come across as 'naughty' were just an attempt at expression.

But Andrew speaks so well...and his language is incredible! Especially given that he didn't hear until he was 13 months old. So CLEARLY he MUST understand since he has great language and is so smart. It MUST be 'bad behavior.' RIGHT? These are the biases that I come up against on a regular basis. I will tell you that children are very very forgiving. Those on the spectrum and 'neurotypical' kids. Some adults- not so much. Sure there is the occassional kid who says, "hey dude. you are weird." But when an adult says something that shows me they 'assume Andrew must know he is behaving badly'...it sticks with me for days. This could be splashing in the pool, tagging too hard at tag, knocking over someones blocks, or kicking sand. As one example, we went to the Hands On Muesum this week. It was a 'block party' and they had oodles of large soft blocks to build with. I could see this as an accident waiting to happen. I could see throwing of the blocks, knocking down someone's tower...etc. I previewed with Andrew what was acceptable behavior and he did quite well. But I was right there giving guidance and there were enough other things around to capture his attention.

In another instance Andrew threw water on someone and an adult said, "maybe we should throw water back on him." They said that out loud. It wasn't 'right' what Andrew did but he was playing and we did have water out. And I don't teach him 'tit for tat.' Actually splashing him would have been a better response.. vs. stating it out loud. That is a natural reaction. This is one reason I was so glad the squirt guns were not brought out at park day yesterday. He wouldn't have had his listener on and would have been squirting everyone including adults. We often play the game with adults at home. So he would have a hard time shifting his brain to think differently in a new situation. When Andrew gets hurt (physically) he often erupts. This is not the time to reason with him, to have him see how the other person feels etc. Often another person getting physically hurt will effect him in the same way. These are all things that show me that his brain is wired differently. He needs to learn (and is) how to reference me to gauge his emotions. He is just starting to look to me, as a 1 year old might, on gestures. The other will come..I know it will because of the progress we have seen. But it will take time. That is what RDI is all about..... going after the core deficits (and I believe re-wiring the brain. That is another post too- the negatives that are showing up with the positives as Andrew's brain is re-wired.)

So how CAN you react with a child who is acting socially inappropriate?

One of the biggest instances of grace we have received was when Andrew hit a little girl about half his size. This happened a year ago at our homeschool co-op. Andrew was sorry and expressed that. She said, "I forgive you." I was still mortified a week later and spoke to the mom. She said, "Julie (kid) and I just talked about how it was not acceptable but Andrew is learning social issues a bit older than most because of his disability. We talked about God's grace and how we need to extend that to Andrew." I still tear up at this interaction.

A final thought...all of this is independent of IQ. The core deficits of autism are independent of IQ. I know people all over the "IQ" spectrum that, when they begin RDI they are back at square one of 'development.' Sometimes the high IQ has made the 'behavior' worse over time because they have been able how to manipulate the situation (their world) to make it as static as possible. That high IQ can also help them fly through the stages but initially resistance to become an apprentice is high. But there are no formulas.

Here is just one article on the core deficits of autism. If you google 'core deficits RDI' there are a number of hits. Not all of them are 'valid.' If you are interested in more info on it for yourself or a loved one, or just to learn, please email me and I can give you more of an overview. I think I will blog it myself at some time.

Anyway this is my little Saturday Morning Rambling. Maybe I should start a MEME for it.

additional note added: As I read through this again it makes it seem like we see this behavior all the time. We don't. But he also does do many mis-steps and we have to deal with them as they come. He is such a great kid to be around..and oodles of fun.

Five Question Friday

1. Do you know how to play a musical instrument?

I have tried many. Played the flute, violin, piano at various intervals. Went to Interlochen summer camp and all that jazz. Now I play drums.

2. What is your pet peeve while driving? Construction and my minds ability to not remember where the construction is located. Went the same route in 2 days...duh.

3. Would you rather have a housekeeper or unlimited spa services? Do I have to choose?? Apparently not.. as the inventor of this little meme said both. I laughed because I had thought originally...I"ll put both but I can't really DO that. Well if i HAVE to choose I think I will take the housekeeper. I can put massages under medical expense :)

4. Is there a song that you hear that will take you back to the moment, like in junior high or hight school dance?

Stairway to Heaven... the long slow dance. Depending on your perspective that was either the greatest song on earth or TORTURE!!!

5. What song best represents your life right now?

Going to pick a few

The Climb my Miley Cyrus.

In the Blink of an Eye by MercyMe

Only Grace by Matthew West

More Beautiful You by Jonny Diaz

Casualties by Addison Road

You are a Child of Mine by Mark Schultz

Walk on Water by Britt Nicole

Your Hands by JJ Heller

Burn the Ships by Stephen Curtis Chapman

but probably the Best for me is:

He is with you by Mandissa

Not sure if THIS LINK will work for the play list i created because Youtube has changed some things. But I put the above songs in a playlist called "life." enjoy

"I don't mean to offend you but.."

Andrew has a habit of saying the above and then adding..."you look fat." He did that a few weeks ago to a child at OT. Things went from bad to worse when the adults involved tried to logic him to stop saying it. That just made him say, "I'm sorry..but you are fat." (over and over again...)

People think- well just tell him DON'T SAY stuff like that. He has probably said that fat thing about 100 times. I heard him say it to someone at a grad party this weekend. But truly he thinks it is 'ok' to say it and telling him not to seems illogical to him. He also doesn't place value on it. I told him I was going to loose some weight and he said.."no mommy! I like you squishy." yea .. sorry kid. I gotta loose the squishy.

Our RDI consultant recommended a book: Look Me In The Eye. It is written by an adult w/ Apsergers. I don't really like that much of the book. The text is somewhat boring to me and there is some 'naughty' language but I think I will buy it (I have a library copy) just for one chapter called, Logic vs. Small Talk. (There is also some in there on how he feels his brain has been re-wired over the years. The second half of the book is better.) There are several pages that are most interesting but let me type out a couple of paragraphs. Starting on page 192:

As to weight...if he looked bigger, I'd say, "You seem fatter than the last time I saw you." I've learned by life experience that people get fatter for any number of reason, most of which are benign. I am aware that people may not like having their deficiencies- increased bulk, for instance- pointed out. But my mouth may spit out, "You look fatter!" before my brain concludes, It would be rude to say he looks fatter!

Losing weight is another matter. If someone looks a lot thinner, I might say, "You look a lot thinner..are you sick?" I know people go on diets. But people my age are just as likely to be thinner because there's something wrong with them. ....

The chapter has much more than discussing just this but it points to the fact that even as an ADULT, he struggles with saying inappropriate things. He was not diagnosed until he was 40..he has tools... yet sometimes his inborn brain wiring just doesn't quite get things 'right.' So be compassionate and patient with those on the spectrum when it comes to communicating. The closing paragraph of the chapter:

With me, though there is no external sign that I am conversationally handicapped. So folks hear some conversational misstep and say, "What an arrogant jerk!" I look forward to the day when my handicap will afford me the same respect accorded to the guy in a wheelchair.

Welcome to GNOWFGLINS eCourse!

I am going to finally delve into this e-course. I had originally asked the creator if I could 'sample' the classes to review them and she has recently changed the pay structure to donate when you can. I am going to post these over on my Picking Fruit blog...but wanted to give it some press here as well. So stay tuned and subscribe or follow Picking Fruit! If you want to know what GNOWFGLINS.... go to her website. Just a little tease.

Defeated??

A friend posted the video below on facebook. It is so rich. I have seen the movie and it is excellent but this clip in particular is just all about..life. (Of course they knew that when they put it in, but still watching it again and again it brings strong emotions. What can I say? I'm a sucker for stuff like this.)

This can be applied to so many areas of my life. I think back to when Andrew was first diagnosed with a hearing impairment and then he was implanted with his "listener." It took some time before it 'took.' We kept crawling....

We still do that today with Andrew's other issues. We keep crawling along and some days it feels like this video. And we do have a blind fold on. Where is the finish line? But we have a coach in God. I am not sure he yells like this coach..but he does sometimes. And at other times he is silent. I also think that there are times that we can and should rest but even then God is moving us along.

I also think this is applicable to health. So many friends are struggling with their health right now. It is hard for some of them to even get out of bed in the morning because of the issues they struggle with. But somehow they continue to move- not defeated- with encouragement from God and friends. I too feel a bit defeated especially in the weight loss department. I keep trying but when everything else is out of control I have 'control' over what I eat. And so i do.. I am beginning to feel that I have more value than what I give myself when I shove food in my mouth.

My favorite line from the clip is, "If you walk around defeated so will they." It is so important to be able to be REAL with some friends about your daily struggles but we are victors when we have Jesus in our lives. I have recently been reflecting with a friend on how God gives us all dreams and visions in our hearts. They are personal to us. When we listen to that as well as the direction for achieving those, even though there are some days that are like the death crawl, the yoke is easy and the burden is light because we are in His plan.

The Presidential Observations...

I DVR'd Losing it with Jillian Michaels. I debated between popcorn or ice cream. I made popcorn.. I poured myself a big glass of ice water, grabbed the remote, sat down to relax after a really long day and promptly started watching..The President. Andrew came in and made it all worth while. So many things he said I can not possibly remember them. These are just a couple of highlights:

• "I gave the President a high five mom! We need to respect the President. But we need to respect God more."

• He was reading the captions and said, "party?? what party??" I quizzed him and he remembered the Republicans and the Democrats. He remembered that Obama is a Democrat and then said, "Well he should probably listen to the Republicans since he already knows what the Democrats think."

• He was very very excited to hear about new jobs and the economy. He would like to let everyone know that Andrew's window washing is open for business.

• He is pretty sure that the President knows Jesus given that he kept talking about prayer and all....

Maybe I will add a few more tomorrow but I just wanted to 'journal' these. I love my kid. (I think I've said that before.)

First Glimpse into sound

There has been a recent video circulated on the facebook that shows when a child's cochlear implant has been turned on.

Most of the comments on youtube and facebook are 'WOW' and "Amazing!" The cochlear implant is on my top five list of "best things we have ever done for Andrew." But I do remember the day he was implanted. I remember feeling...nothing. Yep...nothing. I wasn't 'numb' or sad or excited or happy. And I wasn't on Prozac. The audiologist said, "that's good that you don't feel too excited. Don't have expectations because it will be a process." And she was right. Because of Andrew's other issues, it has been quite a marathon. Most kids who are implanted young can be mainstreamed from the get-go with intensive Auditory Verbal Therapy. We did do AVT and it payed off..eventually.

I guess I wanted to post this for parents out there who have gotten their child an implant and they didn't get a reaction or progress right away. Often audiologist do things slowly so as to not startle a child. And if a child doesn't take off right away, that is OK too. With Andrew it was many years before we knew he was truly understand and a few more before we could understand him. Don't give up! Adults and older implanted children will also respond differently but there are still so many benefits.

I leave you with a few pictures. First we have our family the day Andrew was activated.

A few years after that we went to Chicago to be part of a volunteer training. My sissy went along to help us.

And finally a snippet of a video we shot today while Andrew was acting on stage at a children's museum. A few things to keep in mind. First, it was very noisy and he heard what I said from a few feet away. (I wasn't yelling. I was just next to the camera.) In addition his speech is quite clear. I kept trying to get him to do the whole speech over for the camera. He was trying to tell everyone about Jesus. I just love my kid.