Tuesday, May 31, 2011

Mini-update and Thank You Jesus

Been a rough week here.  I can't imagine how those who are in the worst weather areas are handing it, especially if they have an autistic kid.  Late last week (Thursday maybe?) I sent Andrew to the basement for something.  He was slow in coming up and I heard him say, "Mom.  I think there is something wrong." The basement was flooded... Nothing catastrophic .  But above the ankles and kept refilling and a nuisance.  And tomorrow we are getting a semi major plumbing job to get at the "root" of the problem.  (Tree roots that is.)  Andrew keeps getting upset about his 'stuff' but Thank you Jesus for cousin Jamie who works in construction and has loaned us a heavy duty pump.  And Thank you Jesus for nephew Ryan who has been helping with the clean up.

We also had some wild weather Sunday night and Andrew did 'ok' with the tornado and other weather warnings..but it still makes for a long week.

But sometimes it is the little things.  I went searching for a bathing suit tonight.  I am not sure there is a woman on this planet that enjoys doing that.  Also, Andrew also has a favorite pair of shorts that Mark bought him...last year.  He will only wear that ONE pair.  I wanted a swimsuit (the ones w/ the shorts and tank top) and a pair of the same shorts for Andrew.  I knew Andrew's shorts were from Kohls so I went in and hoped and prayed...for shorts and God willing, a swimsuit.   I turned right to them and found racks of exactly what I wanted.  Two trips to the dressing room and two suits found!!

Then on to the boys section... where I found the EXACT shorts.  And...everything was on sale.  Ok that part isn't a miracle at Kohls.  But I didn't have my Kohls card, and when she put in my info it said "please call."  After she tried calling unsuccessfully, she said, "do you want me to just give you the discount on your regular credit card?" um..yea.

Sometimes it's the little things...

Saturday, May 28, 2011

Why RDI? part one

Although we have challenges..and daily.. I truly think RDI is the best thing out there for remediation of kids on the spectrum.  I think I will blog short entries for a few days.

Reason number one.. it is a do-over.  Yesterday the plumber came.  Our basement is flooded because of all the rain.  Andrew is verkempt over his lost stuff.  (I love that word... although I hate it when I see it.  My friend Jean taught me that word many years ago.)  It was late Friday afternoon and the plumber brought his three year old daughter.  Thankfully Andrew was watching Jimmy Neutron because he would have been verklempt over her playing with his toys.  (He has watched a lot of TV and played a lot of video games in the last week.)  I was able to spend about 30 minutes with this cute as a button little girl and let me tell you- IT WAS EFFORTLESS.  And I saw EVERY objective we are working on so hard with Andrew to remediate.  The reciprocity, the non-verbals, the joint attention was palpable.

And I sobbed.  She left and I sobbed.  I only have Andrew and so I never have REALLY experienced proper development and the gap is great.  I have thought it when I have played with my niece but she is older than three and so I 'justified' in my mind that Andrew wasn't quite 'there' yet..but Andrew is not even three developmentally although he is 10 chronologically.

But I do see things in Andrew- great growth in the phases of child development.  But we have to work for them.  Hard.  When we got Andrew's cochlear implant they said that progress would be about the same as a typical infant.  So he received it at a year old.  And so when he was two he should have the language of a one year old.  I noticed we have been doing RDI for about 18 months now and Andrew is about 18 months old developmentally.  With Andrew's implant it took time and then he skyrocketed.  I am praying the same for this.  God has a plan and I am going to keep asking for insight to be encouraged.

Later this week I want to talk about the differences of DIR and RDI and how in a way, DIR set us up for future challenges.  And then in another entry about how RDI works on communication- and how similar the core deficits are regardless of your spoken language.

Friday, May 27, 2011

Read For The Heart- a TOS Review


Well, it's been a good year!  This is my last review for TOS Homeschool Crew.  I may put up a post this summer of my favorites so stay tuned on that.  And I have been chosen for next years Crew as well!

Apologia gave us Read For the Heart which is a compilation of books that starts with several chapters on reading in general as well as how to 'pick' a book.  The rest of this reference is filled with book summaries.   It has books in various categories from picture to poetry.  You can see the entire table of contents as well as a sample chapter by going here.  The book, as you can see from the link, sells for $17 from Apologia.

There are others in this family of books... An anthology:

anthology [ænˈθɒlədʒɪ]
n pl -gies
1. (Literary & Literary Critical Terms) a collection of literary passages or works, esp poems, by various authors
2. any printed collection of literary pieces, songs, works of art, etc.
[from Medieval Latin anthologia, from Greek, literally: a flower gathering, from anthos flower + legein to collect]
anthological  [ˌænθəˈlɒdʒɪkəl] adj
anthologist  n

This anthology is newer and has a Christian bent.  There are some that I don't think you would find in other anthologies.  Each entry has a brief paragraph or two describing the book with some facts and some opinions regarding that title.

I then performed the "library test."  I went to 10 random pages to see if my library would have this book should I want it.  Because of the Christian books in this list I wasn't sure I'd be able to find some but I was pleasantly surprised.  I have a VERY good library.  Eight out of the ten books I was able to find AT my library and the other two I could find through inter library loan.  One of those was The Spiritual Lives of Great Composers.  YEA!!!  Who would have thought?

Would I buy this book?  Well I own the other anthologies.  So yes, I probably would because I love books and I love books on books.  I wouldn't give this one the blue ribbon but it is newer and has some different selection of books in it.  If you want to peek at what others thought please click on the banner below!

I received this book in exchange for my honest review.

Wednesday, May 25, 2011

Flexible vs. Controlling...

I could also title this post, "why you need a consultant."

I am a do-it-yourselfer.  No one else can do it as well as I can.  Well let me tell ya.  That's a flaw.  It wasn't really arrogance or pride so much as needing / wanting to CONTROL.   Funny thing was, when I saw that trait in my son I called it 'flexible.'  But let me explain....

I used to do RDI as a do-it-yourselfer.  There are some things I have done well myself and even better than the professionals.  But when you have a special needs child the COST is astronomical over what you think raising a child can be, and so I didn't want to spend money on a consultant.  We were already doing speech, OT, PT and other things.  We had spent a few pesos on some really stupid stuff and I was gun shy to spend more.  RDI is definitely not covered by insurance or even the medicaid waiver in the state of Michigan.  So I read books, went to seminars and 'did it.'

The reason I am recalling this today is because we are working on the following objective:

This lesson involves the child learning to successfully adapt to more fluid introduction of variations. Guides increase the rate and the degree of variations that they introduce to shared frameworks

In plain English, when you are doing an activity with a child (such as throwing a ball) and you decide to change up the activity without using verbal cues (for example sitting down), does the child know to follow your lead without any extra instruction?

A few years ago, in the do-it-yourselfer phase, I thought, not only did Andrew KNOW this objective but  he offered up ideas on how to change it up himself.  That's good right???


When he does that he is trying to control the activity to do it his way.  This is 'normal' in autism.  A child wants to be able to control it so that they know what will happen next.  But first they have to follow your lead.   When you try and 'do it yourself' without a good guide you have no idea which direction you are headed.  Andrew needs a guide as much as I needed an RDI guide/consultant.  (This is also a good analogy for Christian life but that is another post.)

What does a consultant have to do with all of this?  An expert consultant helps you work through it so that you aren't hatcheting away at your 10 year old's esteem while still teaching them that you, the parent, can be the 'guide.'  Andrew is ten, after all, but he is working at the developmental age of an eighteen month old.   (Yes it is true.  He may be academically and physically superior but in developmental years he is a toddler.)  So think about an eighteen month old.  They need guidance.  They learn by observing.

I peeked out the window yesterday and Andrew was playing Zoom Ball with his college age cousin.  They were whipping it around every which way and I thought, "I should go out there and show them how to use it."  I stopped myself and thought..NO!  This will be a great 'framework' for this objective later between me and Andrew.

Here is when I questioned Andrew's control vs. flexibility.  When we started zooming, I intended on doing a few back and forth while standing, and then sitting down to see what he would do.  But right out of the shoot he started whipping it around and making his own variations.  I dropped my end of the toy and waited.  He handed it back to me (a nice repair) and we repeated that scene for a few rounds before I said, "no I'm done."  At first glance, and in the past, I'd have said, "WOW!  That is great that he is being flexible and thinking up all the variations and ways to do Zoomball."  But now, with a consultant's help, I know that it is his way of controlling.

Think about an eighteen month old toddler.  If they are constantly changing things up, what are you, the parent/guide doing?  Chasing them!  It is exhausting when they are young and even more exhausting when they are pre-teen.  Or perhaps, that IS the age where children start to challenge and control their environment and that is WHY it is so exhausting.  Either way...

Today we had a Skype with our consultant and we worked through this particular objective and framework in a way so that Andrew could be ten years old and eighteen months all at the same time.  I won't bore you with the details, but it involves letting him be an individual while making my own guided variations.  If this all sounds complicated and strange, I promise you it is not.  (Strange..maybe.  Complicated..not.)  Our consultant makes it easy.  We also video tape our activities so that we can review it ourselves and have her do the same.

I don't know if any of this makes sense but I struggle daily with Andrew's 'ages' that are all over the map.  He is so gifted and talented in many areas.  But 'doing people' (aka relationships) is hard for anyone.  Add in deficits from autism and it just is so complicated.  That is what I love about RDI.  It is a do-over for us.  It is slow development but it IS development.   I have seen great things since we have started eighteen months ago.

If you have any questions, please ask!

Tuesday, May 24, 2011

Outside Fun Lazy Bum....

This week I wrote an email to a 'coach' in the area that works with those on the spectrum.  He is very in tune with RDI philosophy and started training on it at one point.  We had tried soccer a few years back with him and it didn't work but I thought he might have some good ideas or that it might work now.  He said that what they do in soccer isn't really a game (I knew that) and that perhaps a solitary sport such as swimming or karate might be better.  This was very discouraging because if anyone can coach a kid like Andrew, it would be him.  And I want the kid to get more physical exercise.  I want him to have more outside time!!!

This weekend hubby and kiddo were outside playing with a remote control car that Grandma had given him a few years ago.  They were having a great time with it and so I was trying to brainstorm other outside things that don't involve 'sports.'  I asked a few friends and one is an EXPERT at ideas.  So I wanted to put them down here 1) because they are great ideas and good to share and 2) because I will loose them if I don't put them down on 'paper.'

  • model rockets
  • weather equipment
  • sidewalk chalk
  • lemonade stand
  • potato cannons
  • nerf guns
  • water balloon sling
  • watermelon seed spitting
  • pumpkin chunking
  • remote control boats or planes
  • kite flying
  • mime
  • street performing
  • survey taking
  • fund raising
  • door to door evangelism
  • painting
  • weeding
  • nature collections
  • collecting litter
  • fishing
  • stomp rockets
  • croquet
  • horseshoes
  • yard darts
  • frisbee golf

Now get out there and get your vitamin D!  Feel free to leave some comments with more ideas and I will add them to the list!

Wednesday, May 11, 2011

GoTrybe- A TOS Review

I had the opportunity to have a subscription to GoTrybe.  It is an online fitness program.

One part of the program is physical fitness.  There are videos where you drag mini-clips into a video line and then you go thru and complete the videos.  They are 'real people' videos.  This worked out OK but there are not many male instructors.  95+% is women and girls.   I didn't do this with Andrew (see the following info on why), but I didn't find any boys in the ones I did.  Some folks said at the next middle school level there were boys and men.    It is difficult to convince a 10 year old boy to work along side a female instructor and a couple of pre-teen girls.  Although not quite 'dance aerobics', it is still girls dancing.  Also, although mostly modestly dressed, some were still in leotard type outfits.   I just didn't really want to do this with Andrew because he is so visual.   Many other folks reviewing this product thought it was just fine.  (Click on the banner below to see their reviews.)  I actually go through magazines that come in the mail for Andrew and rip out pages before I give them to him.  Mostly these are video game magazines but once something gets in his brain it stays there and he is in the stage of 'making comments' about people's appearance.  I also have him pick the 'male' trainer on Wii Fit...so that tells you a bit about where we are in the thinking on this.

  The videos are not captioned, but I suppose they didn't need to be because you can follow along.  They do talk quite a bit in them though.

There is a nutrition component as well where you answer a daily question and get points to buy virtual prizes for your avatar.  The same is true for a motivation section.  You also do get points for your exercise.

They did have excellent customer service.  I attempted to contact them twice regarding both the boys in the videos and a password issue and they returned my email promptly.

All in all, this was a no-go for us but it could be OK for others especially if you have girls.  The good news is that.....

You can try this program for free for a day to see if you like it.
The cost for the program is regularly $39.95 annually.  However on the F.A.Q. page there was information that you can use the free code for a day and then sign up after the free day for a one year membership of $19.95.  So make sure to use the code if you sign up!

I received a subscription to this free of charge in exchange for an honest review.

Sunday, May 8, 2011

Happy Mother's Day

I was asked to write a summary of our journey for a Cochlear Implant Online and I thought this would be the perfect day to do so...being Mother's Day and all.

A long time ago, in a galaxy far far away...  well that is how it seems.  As I prepared to write this article, I was sent searching through my pictures to find one the day Andrew was diagnosed as profoundly hearing impaired.  You see, he was born before the digital age, so I had to go through a few boxes of actual print pictures to find it!  I was recalling all the fun, and difficult times we have had over the last 10 years as I thumbed through the pictures.

Andrew was born with a profound sensorineural hearing loss and was implanted at 13 months of age.  He was born early, received the proper hearing test in the NICU and I was told by the pediatrician that he might "grow into his hearing."  I was a new, first time mom.  This, my dear friends, is not the case and I find it difficult to believe that such a good doctor could even utter those words.  Thankfully, I am a pursuer.  And pursue I did.  We went ahead with the appropriate testing and on October 31, 2000, just two months after Andrew was born, we had a confirmed diagnosis.

The "good" audiologist told us that our Early Intervention folks would call us.   Again, I am thankful I did not sit on my laurels.  My husband and I made calls, got in programs, had our first run in with IEPs and so on.  We have in our area passionate teachers of the hearing impaired.  Don't tell anyone this but they let us in the classes even before we had a signed IEP.

Andrew also had other delays early on in his life.  I have a very good friend who is also now Andrew's developmental pediatrician.  She told me many years later that when I was at her house visiting when Andrew was only a couple of months old, that she knew there were other things wrong with him.  But what was she going to do at the time?  I was doing the proper things...getting in involved with Early Intervention, going to PT, OT and even speech.  

So... I have let the cat out of the bag.  Andrew has other things going on in addition to his sensorineural hearing loss.

I have to say we have been blessed for ten years with an incredible team of professionals that have gone above and beyond.  Even looking back I see God's favor.  Those in Early Intervention know that support is minimal.  We were dual enrolled in our district's program as well as the county's hearing impaired program.  We had PT, OT and classes in both programs as well as a Teacher of the Hearing Impaired coming to the house.  This teacher was assigned to come once a week...and she often came twice.  We were going to classes for those who were involved in both sign and oral in an effort to make our cochlear implant decision.  God also put in our life Mark's cousin Jeanie.  She is a Teacher for the Hearing Impaired in the Upper Peninsula in Michigan.   Sometimes I think of God sitting up there when Jeanie was born and peeking ahead to when Andrew was born..knowing there would be a connection.

When Andrew was thirteen months he received his cochlear implant.  The surgery went very well and we started Auditory Verbal Therapy immediately.  And we worked....and we waited..and we worked..and we waited..and we switched therapists...and we worked..and we waited.  And nothing.  And we wondered was this the right thing to do??

During this time several speech therapists suggested that Andrew start occupational therapy for sensory integration.  I balked at the idea because our initial occupational therapist said that this wouldn't work for Andrew because he has an inner ear malformation.  We were also doing physical therapy at the time because Andrew was not walking at age one..or two.  I knew in my gut we should try it.

Finally we started both PT for the walking and OT for sensory integration.  We were doing this through the schools but added on private services.   We also started a hearing impaired oral preschool.  Once again God put together a wonderful team of people.   Andrew started to walk, and eventually he did start to respond and talk.  One of the first words he said was when he was around four years old.  We were walking into Meijers (a grocery store) and he pointed to the sign overhead and said..WELCOME.  That's what it said!  OK...so my kid can read!  He is still a reader and loves words.  He spells better than I do and will read anything he can get his hands on.  This is a picture from a walk we were taking.  It is a tag on the fire hydrant..it has words..therefore he must read it.  You can scroll down to the previous post where I posted just one of the many poems he has written.

When Andrew was in the oral preschool we knew there were other things going on.  We always KNEW that but we needed additional supports.  Andrew is a complicated kiddo.  In the schools you need labels. So we did the proper evaluations and added autism to his IEP.  The professionals were awesome in our county's hearing impaired program and although some have problems getting additional services, this was not an issue for us.  Andrew's developmental pediatrician doesn't necessarily agree with this label and I don't know if I do either even five years later, but there are 'other things.'  We finished out Andrew's early years in the oral preschool with an autism consultant and other additional supports.  But then it was time to make a decision for kindergarten.

There were three choices.  1) Hearing Impaired K-4 classroom, 2) autism classroom or 3) mainstream.  None of these fit well. Andrew could read and clearly even the 'accelerated' reading programs were below his capability.  I didn't see the county's hearing impaired elementary as a good solution.  The autism classrooms were, in our district, mostly about babysitting.  And there was no way he could be mainstreamed so we decided to homeschool.

Homeschooling has worked well for us.  If I am to be honest, I will tell you that if I could find the right public or private school, I would put Andrew in it.  And I am not going to go into detail on why we don't have that in our area.  But homeschool can be, and is for us, a blessing.

There are other interventions we have done as well.  When Andrew was still in preschool we started a gluten and casein free diet.  This does not work for all children but does for him.  Our developmental pediatrician is open to both biomedical interventions as well as medication and we do not rule out medication.  At this present time we are treating Andrew with antibiotics for PANDAS.  Some of the PANDAS signs are tics and OCD type behavior.

We also started Relationship Development Intervention for the autism.  This program is much different than both ABA or Floortime, both of which are done for autism.  RDI focuses on....relationship and it gives hope because it takes the child back to square one to focus on reconnecting those brain snapases in the proper way.  You can start RDI at any age with a child.  It is never too late.  It is funny because much of what we are doing with RDI is non-verbal but we are blessed to get a consultant who gets Andrew as a WHOLE child and knows that his implant is part of who he is, so she does not take AWAY the verbal- because that is so important to him.  (Much of language is non-verbal and Andrew did not intuitively pick up on this.  In addition we focused, rightly so, on verbal after the implant.  So we are getting a mulligan on the non-verbal right now...as well as working on various behaviors and 'stuff' that goes along with autism.)

There are some unique challenges when you have an implanted child with 'extras.'  For one thing, we still wear the BWP..body worn processor.  Andrew has worn it since he has been a year old.  The BTE...behind the ear... feels different, sounds different and change is very very hard for a spectrum kid.  I also would like to look into bilateral implants but honestly, until a year or so ago, getting Andrew to change to shorts in the summer was too much change for him.  When he was a year old we could easily make him wear his implant.  At 10, it is a different story.  He has to buy in.  There are ways that you can help facilitate this of course and our decision to wait is thought out and made with prayer.  I do know others who have kids with both autism and bilateral implants so if you are interested, please pursue it!  They were not doing bilateral implants when Andrew's surgery was completed.

I feel that we spent the first five years focusing mostly on the hearing impairment and the next five focusing on the 'extras.'  I feel the pendulum switching back.  I am reading all the updates that have occurred over the last few years in the HI world, seeking information and getting involved.  It is impossible to know and do everything and we just need to take it one day at a time.

We have had some really rough days when it comes to the 'other' areas with Andrew.  I am thankful that he can talk...and well..and often.  The cochlear implant has been an incredible blessing and clearly was the right decision.  One day he dropped the 'F-bomb' in a museum.  I'd like to say that he learned that in school, but we homeschool.  Then there was a day when he was about five that he had such a large tantrum in Target that I had to drag him to the parking lot.  I couldn't drive with him in that state so we sat there for 90 minutes.  At that point I saw the security guy come out because someone had mentioned a screaming kid in the parking lot.  Thankfully he had seen the whole thing and we were actually pulling out when he was walking to the car.  Just last week, (he's 10 now), he ran out of the yard and INTO the neighbor's house.  He was having such a fit, and they took such pity on me that they brought US cookies.  I didn't have the heart to tell them we don't eat gluten or milk.  I just said thank you.  Even at our last audiology appointment, Andrew could not participate the way a typical 10 year old would to get a good map.   He did however manage to interview our audiologist.  It is lovely and shows how far he has come.  Here is that interview for you.  (This is my first go at captions.  I need to clean it up but this is the first pass and it is read-able.)

When you have a child with autism AND a hearing impairment, you have to really pave your own road. There is no perfect one.  I have had to lean a lot on Jesus.  For decisions, for comfort, for mistakes...  I just wrote a post for another blog that I have, and in a nutshell, when it gets right down to it, the only way for me to make it through some of the really rough days is to give Him ALL of it.

There have been many decisions that we have made where I wonder if they were right.  But the implant has always been the right decision.

Sunday, May 1, 2011

The Goblor Plant

The Goblor plant grows from words.
It lives from speech, that's what I heard.
Should it lack gab, it will die.
So talk to it every day, up to the skies.

By AJ Lapain
© 2011

Amy's review:  I think this is a wonderful poem that my son wrote in less than five minutes.  He has a wonderful gift with words.  I love so many things about him!!!  And I love his poems.  What I like most about this poem is the way he uses the word "gab."  I love the silly name "Goblor."   There is nothing I don't like about this poem.    (He gave me this poem free of charge in exchange for my honest review.)

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