Sensory needs.... implant materials...

Sorry I don't have a more catchy title to this post. My head hurts.

On one hand, Andrew is under responsive to all things sensory. He love heavy hugs, deep pressure and swinging like a monkey.

But he can sense the smallest of changes. When we change his mapping on his implant, even a tiny bit, he notices it. We have tried going to the BTE but it is MORE than just the feel of something on his hear (his BWP has nothing on his ear).. he senses small changes in programming. I think he might be a super taster and sense small changes in flavor. He likes Lays chips...not BetterMade. (Ok even I can taste that.)

We changed his head piece this week. We made sure it had the same number of magnets. He felt a HUGE need to push things into his headpiece and even when it came off, he'd smush things on the implant site. It then transferred to pushing peas in his belly button. I thought I might go insane. We decided to change back to his old headpiece. Within a day it stopped. If you look closely, there is a DIFFERENT RUBBER on the circle around the headpiece that touches his head. REALLY?? Obviously there is some sort of 'reaction.' Now what to do about it????

Happy Birthday Andrew

Eight years ago today I was lying in intensive care...so was Andrew even though he was a perfect 9 on the apgar. Just precautionary and I'm sure the decision was also made because there was no place for him to go!! So my dear husband toggled between two hospital rooms and going a bit nutty I am sure. Since then so much has happened....he had a newborn hearing screen and failed. But "it was probably just water in the ears." So since then, we've had a cochlear implant, realized there was 'other stuff,' done hours of hearing rehab, physical rehab, occupational rehab and each year has been a bit of a drain. But.... i feel this is the first year I have really enjoyed my little buddy. And this is all because I have worked where he is at versus where I want him to be. I've worked in God's timing...not mine. Read below for some accomplishments in language, development and relationships!

Just today, we walked down to the gas station to get a paper. We do that often as I have mentioned and I told Andrew he could get a Wonka candy. He can't eat them mind you....he just loves the wrappers. And since we frequent this place the attendant gave him an additional free candy when we said it was Andrew's birthday. Andrew says.."Thanks! That's Out of Control!!!!!" You would have thought he'd won the lottery. I also taught him 'off the hook' on the way home;) Gotta keep a homeschool kid up on the lingo!

My last post was on our trip to a local park. The pictures show Andrew with another little boy Josh. We do not know this boy....Andrew and him just 'hooked up' amongst a hundred kids at the playground. Andrew would run off and Josh would follow him....Josh would run off and Andrew would chase him down. We took a brief 5 minute bathroom break because I felt Andrew needed a mini-chill.... but Josh was actually following us on the way back LOL. They played for an hour! The sad part, in this day and age, is that I felt uncomfortable asking mom for a phone number exchange because it was clear that she was not interested. Andrew was very very broken hearted yelling...get her phone number mom!!!!!!!!! We soothed the open wounds by stopping at MDs for a Star Wars happy meal toy on the way home. Shopping and eating...it solves everything;) Well- it doesn't HURT as long as you don't count on it. But he did handle it well. I think we all use distractions when we feel hurt. Andrew was very hurt about a potential lost relationship. That's wonderful.

And since I've taken a bit more relaxed homeschooling approach...meaning shorter focused lesson times aka Charlotte Mason, Andrew has really taken off. Here is a picture an artistic work he did just this morning...100% his work: the cutting, the writing the folding. When he was two years old in early intervention they were trying to get him to cut with scissors. He wasn't ready and he rebelled...so did his mommy. Given time, patience and working in the 'zone' he makes tremendous progress because it is not disheartening! He can actually DO new things!!!



And yesterday we went to The Henry Ford Museum. It is a favorite place even though the open expanse can make it difficult for Andrew to hear. What a great time. The best part was the language exchange between us and between Andrew and a 'guide' in the museum. There was a very specific place Andrew wanted to see in the museum; the mock up of the inside of a plane. He didn't know how to communicate it and I had no idea what he wanted. I told him he could describe it to a guide and she understood Andrew's words but not what he was describing but she suggested we go to the upper level to see all of the exhibits. While walking around upstairs I finally realized what it was he wanted to see! So his language and speech were great and he did not melt down! We just kept figuring out new solutions! It was great. Here is a picture of the cockpit.





Our big party is tomorrow but today the teenage cousins are coming for a sleepover!!! I made cupcakes this morning...with the wrong flour....still gluten free but I used tapioca flour instead of my blend...oops. Tastes great but the texture of a tire. Andrew didn't seem to mind. Will buy King Dons for the cousins this evening. The cake however, made with the correct flour is lovely. Thanks Tammy and Penny. I took a combo of all the recipes LOL! I'll post it later.

I thought I'd include a few other pictures from our visit to The Henry Ford Museum. It is a fun place to visit. If you come, I'll be sure to take you there. We saw all the usual stuff and also he sat and listened to a brief presentation by a live person while sitting on Rosa Park's bus. I don't know how much of it he actually understood but he sat and listened. (mostly.) I'm including a picture Andrew took of me. I think he was telling me to 'be a gorilla...." and he was doing the same in some of the other pictures. Fun times!!!

Hearing Impaired Diver at Olympics

Diving is my favorite Olympic sport...and here is an article on Chris Colwill who is one of the US divers. They are awesome to watch.

Living Math Books

I think this topic really crosses every area I blog. It is obviously homeschool and Charlotte Mason but living math books are wonderful for building language and understanding for those that are hearing impaired as well; including those that use ASL or spoken English as their first language. Too many times we focus on 'skills' versus general understanding and both are important. Books are probably the single best way to increase your knowledge across a variety of subjects and increase your vocabulary. Living books make it interesting.

First, there are lots of living book definitions out in cyber land. For me, a living book is a story that brings a topic to life. Here is a detailed definition. It could be social studies, history or math just to name a few. There are also oodles of lists on living math books. This past few weeks we have done an impromptu unit on money. I have found lots of great resources that I already own!! Here are just a couple of great 'living books' on the subject of math.

If You Made a Million teachers the the 'power of the dollar' through a brief introduction of the concept of 'interest.' It starts out with what you might purchase for a penny and works it's way up to a million dollars. It discusses how many pennies, nickels etc.. it might take to make various amounts of money and why 'checks' are important as well as how checks are processed.

Another fun book we have read is Money Troubles by Bill Cosby. In this book, Bill desires to save up for a telescope which costs $100. He learns the value of hard work and then in the end a social lesson is learned as he determines that other people have greater needs than he does.

We are reading two books which are not living books but are wonderful resources and written in a very 'learning friendly' style. Larry Burkett's All About Money discusses how banks work and a bit of history behind money. Kids' Money Book by Neale S. Godfrey is chock full of history, the workings of economy and much much more. I love it so much that when I couldn't find it on my bookshelf I repurchased the book!

If you are interested in more living math here is a website for you and another here.

We also added a bit of practical workings to our study of money. A few weeks ago Andrew ran a lemonade stand and was able, with a donation from mom and dad to buy Babo. We decided to institute an allowance; a nickel here, a quarter there and three weeks later Uglydog was able to join the family.





If you are interested in Uglydolls you can peek at the archives of Andrew's blog.

AVT in action

I've been wanting to blog this for quite some time and I only have one part of it captioned...so i will go ahead and just show just the one clip that I have finished and save the other for a later date. Andrew and I did one of the weekly activities from hearing journey. To be honest, he is well past this and we normally do most of our listening practice during every day activities...but I thought I'd show how you can mix things up a bit. First, the idea behind this activity was for Andrew to listen to where I was asking him to put the treats and I would do the same to my hidden snack mat. We then compare to see if he is right. But you do not need to print out anything- any doll, plastic McDonalds toy, plastic or real food, or even blocks will do. The idea is to provide language just at and above where your child is at developmentally. If a child is just beginning, you might GIVE a child a toy french fry and say..."moooo." Then they would give it to the cow. You may have to START by showing them what to do a time or two. When they are advanced, still practice listening but add several treats and several 'people' or things to give the treats to as we did in this video. Also use voice inflection changes (such as I did with 'really') to indicate an idea. You can use words like 'each' or 'many' as well. I read somewhere that a person's auditory memory is their age- up to a certain age LOL..I know I can't remember over 40 things in a row!!! But don't worry so much about that...give some success at what there level is then bump it up a notch. A wonderful AVT told me to not let them get it wrong more than 2 or 3 times max. I'm famous for drill and skill which is not a way to make a happy auditory camper!

Andrew also has adhd and 'other.' I make our sit down lessons SHORT...very short. Five minutes tops! And I have learned ways to re-direct over the years. In this case, I just ignored his errant comments.

LEMONADE FOR SALE

WELCOME TO MY SALE. DO YOU WANT SOME LEMONADE?

WHERE ARE THE CUSTOMERS?

OH HAPPY DAY!!

HMMM...WHICH ONE?





This one!!! For Babo's description see below it contains idioms!

I am planning a future blog where Andrew and I put together our lemonade stand. It was an excellent guided participation venture and I did catch it all on video. But for now I will upload a few pictures. There were quite a few customers at Grandpa's garage sale. And we learned a few lessons to boot- not to mention the language opportunities!!


Favorite quote: "This isn't fun, but it's exciting." When I pressed him he said, "It's hhhaaarrrddd work but I'm earning money." With his profits, he bought a new ugly doll- Babo. Mom and dad had to a chip in a bit extra.

I put Andrew in charge of the money and I poured the lemonade. This worked out very well. He was able to figure out how much for two people, how to make change and he learned about tips. Just yesterday we were at the mall and went for french fries at the food court. (a small feat and blogworthy event as well.) He wondered what a tip jar was and today he received a 95 cent tip!

He learned to be nice to all garage sale customers- even the crotchety old ones that wouldn't look us in the eye. After being a tad of a 'hard sell' he yelled at the second one, "HAVE A GREAT DAY!!!!"

Another 'tip' a friend gave me to make it even simpler for those that don't understand the value of money- just charge 'a coin' and then the customer can decide what they will give.


Babo Description:
Babo is best friends with Wage...and the cookie jar. But once he gets to know you and the kinds of snacks you keep around the house...he will focus mostly on the snacks! We all know Babo's got your back, and he will stick up for you when the chips are down...unless it's potato chips. If those are down, it's time to get over to the store and pick some up. Why does Babo seem smaller? He's just too far away from you! When you guys hug, he'll seem to be a lot bigger.

Thoughtful Thursday

Who said:

Perhaps my sun shines not as yours. The colors that glorify my world...may not correspond exactly with those you delight in; but they are nonetheless color to me. The sun does not shine for my physical eyes,..nor do the trees turn green in the spring; but they have not therefore ceased to exist, any more than the landscape is annihilated when you turn your back to it.

OK I hate guessing games so I will tell you Helen Keller. I am on chapter five of a wonderful book on child development. I will leave you guessing on the book though as I plan to blog on it further. This quote was in the chapter on child development in children with disabilities- specifically blindness, deafness and adhd; not all together. I am depressed and inspired. As I read I realize Andrew has had seemingly insurmountable challenges to overcome. Thankfully God has taken me one day at a time did not give me this information when Andrew was born. I'd have given up!!! The inspiration is that a girl, although she could hear and see at birth, lost much of her early childhood 'in the dark' yet still through a patient and persistent teacher, changed the world.

Deaf Village...

There is a great new website called Deaf Village. It brings together folks of all 'walks of life' as it concerns the Deaf and hard of hearing. I am one of the blogger links on there so I thought I would write just a bit about ourselves and how I may end up contributing.

Our hearing history:
My son is almost eight years old. We found out he was deaf through newborn screening. The doofusses (how is that not in spell check?) did the test and said it 'might be water in the ears.' The pediatrician said "check it again in two months because he may grow into his hearing." Dorks! So on Halloween of 2000 we found out Andrew was indeed Deaf..profoundly. We immersed ourselves in activities of all kinds....we learned about oral, ASL, Deaf community, cochlear implants. (etc...) We went from Deaf events (churches, scrapbooking weekends) to cochlear implant seminars. I HIGHLY recommend EVERY parent, Deaf or hearing, to attend every sort of event they can in the first year of their child's life to determine the course that they might want their child to have. There is only ONE wrong answer...the one you let someone else make for you.

We decided to proceed with a cochlear implant at 13 months old. We chose Advanced Bionics. We started with Auditory Verbal Therapy. Again- personal choices, based on MUCH prayer, work and involvement in Andrew's first year of life. There are oodles of posts on all this stuff elsewhere on the WWW.

the "other."
As Andrew developed we knew there was 'something else.' Prior to the implant we did a CT scan so we knew Andrew had malformed semi-circular canals which would delay his physical development. But there was again...more than that. Two AVTs said there was 'something else.' One had no idea what to do and the other suggested an Occupational Therapist. But you see, the first OT we saw in the schools said 'it's just the malformation of the semi-circular canals. There is no need for other therapy." Note: Never listen to just one person...and don't be stubborn in your thinking. There is a verse in the Bible that says, "Test everything. Hold on to the good." 1 Thessalonians 5:21 In the Bible that is referring to prophesy primarily but I think it holds here too. When people ask how we have made decisions, the primary answer is prayer. We KNEW there was something else from day one. It took awhile for that knowing to take root in action when it came to the 'other' issues.

We were in a FABULOUS oral preschool. There were a few hard fought IEPs even before this class but once we got here we thought it would be great. The problem was, the teacher was an HI teacher with HI kids...and Andrew had 'other.' After many evaluations we did a MET and he was labeled as having autism. His developmental pediatrician says he is 'autisticish' in that he dances around it but never quite enters it formally. Regardless, he has sensory, attention, and social issues way beyond the scope of an HI room.

Homeschool
We looked around for an appropriate program for Andrew. I have always had homeschooling on my heart, even before Andrew was born. But we did want to keep our options open. As we looked toward Kindergarten our options were 1) HI room, 2) Autism room or 3) Mainstream. Andrew is "pretty smart." Let's just say that when I went in and saw there accelerated reading program I almost laughed out loud. In the autism room I saw kids lying on the kids licking toys (and escaping while I was left in the room with the other kids.) In the mainstream room they were 'included.' I witnessed the teacher say, "Go tell Billy Happy Birthday." Billy was the autistic student. Does that sound like inclusion? So...we homeschool. (Yes I know all my rights, I know I could fight for the prefect situation...but homeschool is what we feel is the best option for him right now.)

Our inclusion for homeschooling is hit and miss. Some folks bend over backwards to include. Some folks..well...not so much. Because autism manifests itself in behaviors, some folks see it as 'bad parenting.' And the cochlear implant has been incredible. Andrew reads above grade level. He can communicate in incredible ways with people one on one. I recently had my neighbor say, "you are doing great with him." This was after a conversation directly between Andrew and her. This is incredible for a kid born deaf and also with 'other.' Still Andrew's behaviors prove challenging. We went to Nana's funeral service today and Andrew didn't want to listen to the 'pretty music.' Is that the autism? the way the implant transmits music? or just plain stubbornness? No idea....


Academics is challenging in that I try and formulate our day to best fit his needs. We do the Charlotte Mason approach with an eclectic mix. I am in the process of formulating our fall curriculum but no matter what the materials, it will consist of short, high interest lessons. We will add in low interest lessons as a way of improving attention but those lessons will be VERY short. For autism we informally do RDI so I prefer to call it Mediated Learning or Guided Participation. We do not do ABA because we don't believe that has a long term lasting effect for most children with autism. There is controversy everywhere;)

So what will be my contribution on Deaf Village? Well, did you know that ONE OUT OF SIXTY Deaf kids is autistic????? That is well above the one out of one-hundred or so in the general population. And many people- deaf, autistic and combo end up homeschooling. So it is a uniquie niche that I fill. I have two other blogs. Settings of Silver focuses on our household; we do allergen free and are trying to organize our house to maximize attention and sensory input. I also have Our Art and Music Blog. I put, well, our art and music stuff on there that we do for homeschooling. Charlotte Mason is heavy on those subject areas and it is a great way to work on listening as well. I think that may be of interest to some folks here. It will probably be updated more frequently once the school year gets rolling. so....that's us....thanks for stopping by. leave a comment...or just enjoy. Oh- my OLD blog is Growing Fruit ONE. I moved here for a variety of reasons but you can check the archives for various hearing and homeschooling activities we have done!