Where to Begin

I've been such a bad blogger! A lot has happened over the last couple of months, probably too much to try to blog about. I'll just try to hit a few of the main things in the next couple of the posts.

Bebo had surgery on September 1st. He received his 1st cochlear implant. It will be activated on September 1st which is next week. We are excited and nervous all at once. Many of you know we were not going to do the cochlear but things have come up and felt that it was a MUST for him.

His recovery has gone well. He had pain probably the first couple days but the pain meds took care of that. He is back to himself and full of spunk. Here is a picture of his surgery site just two days after.They used surgical glue instead of stitches and the site looks much better today.

He will receive his processor on September 1st and his ear will be "born" that day. Meaning he will start hearing just like a newborn would. He will have to learn how to hear. He will have to take his processore off when he goes down any slides, trampolines or plays with balloons. Otherwise he could damage it.

I'll post his progress with his CI when they turn it on. :)

Teeth

Or the lack there of! It seems that for awhile Spitfire and Bebo where neck and neck with teeth falling out. Bebo had lost two before he had come to be a part of our family. As soon as Spitfire had loose teeth it seemed Bebo's teeth started to wiggle. He lost a bottom tooth and she lost her two front bottom teeth. He then lost a front tooth. A few months went by and no one lost any teeth. Bebo lost his "odd" shaped tooth right after Christams and I'm waiting to see how it is going to grow back. Now they are back to "competing" again! LOL Spitfire lost her first front tooth a couple weeks ago and it has changed her little smile so much. Both have other teeth that are ready to come out. They are keeping count how many each have lost.

Twink's teeth are nowhere near ready to come out. She will come to me wiggling when she sees the other kids doing it to their teeth.

Bebo's Christmas Concert

I know I've been gone a long time but that is going to change. I finished my ASL 2 class and don't start 3 until the end of January. :)

This is Bebo's very first Christmas with us and he is so super excited! His school did a performance last night and the kids did about five songs. This is my favorite though. Enjoy!

Well apparently it is too long for blogger. :( After an hour or so of trying to load the video, blogger let me know it was not working.

Seizures or Tic?

Tell me what you all think of these video's of Bebo. I have brought it up to our family doctor but he seemed to think it was behavioral, I'm not so sure. I would think that after 6 months these behaviors would slow down and they are not.

**Let me add that the head movement is not in anyway related to what he is watching. Remember we have watched him do this for the last 6 months. Also in the bottom video the leg movement is involuntary.He does this when he is relaxing, watching TV and when he is trying to fall asleep at night. He does do it for a bit when he firsts falls asleep as well.**

Just a side note, Twink is letting me know that she tooted and that she has a stinking butt in the second video. :)

Wordless Wednesday

Going Through The Motions

Not very well either I might add!

Happy Birthday!

My niece, Special K had her first birthday party this past weekend. Just look at how cute she is! We had a great time at her birthday party as did the kids. SK is already signing to her mama thanks to Baby Signing Time Videos. I love to watch her sign, it's so sweet!

Enjoying the first couple tastes of her cake. I'm SURE she did not sleep that night due to all the sugar! LOL

She loved the feeling between her little fingers. She worked at it until it was tiny little piece.

The aftermath! ;)

Bebo loved these glasses. He is one silly little boy!

Twink enjoying her juice and trying not to get wet!

See what I mean when I say she was trying not to get wet! LOL This is Spitfire who LOVES the water.

Umm, yeah this was my idea! hehe Poor Jewel went swimming.

Bebo's Art Award

Last night Bebo was honored for an art piece he drew. Seven schools participated in the Build A "Framework" Of Character Contest. There was one winning participant overall and seven 1st runner ups from each school. Bebo won 1st Runner Up for the Deaf School! :) We were all so excited and proud of him. His principle was so excited to share the news with us last week. 

Bebo loves to draw. It is one of his favorite things to do. I will say he is very, very good at it too. Some of things he does is just mind boggling. I have one piece on camera from when we were in China. This is coming from a child who had just turned seven mind you. My almost six year old does not draw nearly this good.

Bebo, we are so proud of you! Keep up the great work and do what you love for as long as your little heart desires.

Too Painful

Today's eye testing was too much for Bebo. He went to the eye doctor to have an ERG performed. Unfortunately when they placed the contact in his eye it was too much. If you'd like to view how they go about this procedure you can check out a video at the bottom of this page.

After they place the three main leads on him as well as the dilating drops we all sit in the dark for 20 minutes. Then the numbing drops are placed in his eyes by the use of red lens flash lights. (remember we are sitting in a dark room) After that is when they place the contacts in. Or should I say try.

He did great! They were all so impressed with how well he did. Unfortunately we will have to wait a VERY, VERY long year to repeat this test again, all the while worrying. *IF* insurance pays for genetic testing we may find out this fall.

Prayer Request

Tomorrow Bebo goes for further eye testing as his eye doctor was concerned after his routine vision test last month. Could you all please say a prayer for him as the test is not a comfortable one. That we would also receive the test results tomorrow and not have to wait any further with questions. Thanks!

Wordless Wednesday

M

O

M

Racial Identification?

The look from Twink is about how I feel when we received a letter home from our local school district. The letter/form title reads Student Racial and Ethnic Identification. It states in this letter that they have adopted a new policy that requires them to collect this information. The information will be used for the following:

- Report information to the State and Federal Education Departments
- Plan educational programs and make sure that they are readily available to all students.
- Study the movement of students in different ethnic groups as they move from school to school.
- Analyze differences in academic performance, attendance and completion of school.

If this form is not filled out a student records officer from our school or the district will be required to identify the group to which the student appears to belong, identifies with, or is regarded in the community as belonging.

Does anybody else see this as wrong? I know people who do not have children of a minority race see no problem with it but I just do not see why this is REQUIRED! We have already given this information once when we register the child for school so why do have to do it again?

I can tell you that both of my children from China are register with the school system but do not attend the schools. One goes to a deaf school and the other is in the preschool program. We are moving out of the school district but I am disappointed that they have decided they needed this new policy.

What are your thoughts?

Flags Galore!

 

We went to a local park Sunday after we heard about all the flags that they had displayed for Memorial Day. Actually they were doing a fundraiser for a local school and this was the beautiful results. I think I read there was 1,300 flags and honestly it was a sight to see. 

These pictures really do not do them justice.

Deaf NOT Dumb

Pictures are from last week when Bebo received his new Phonak hearing aids. Pictures pretty much speak for themselves.

 So Excited!

Surprised by sound

 Pleased!

This is how China labels some of their deaf children in the waiting children program. It is not acceptable as these children are not dumb!

When people find out that Bebo is deaf I get that "Oh" and a long pause. Up until recently you would not have known he had any hearing issues. Now with his hearing aides, it is a little bit more obvious. I've had a wild array of comments from the moment he arrived. Anywhere from does he read your lips (this just coming home from China) to questions of his intelligence. Why do people automatically think he has intellectual impairment?

What I'm also find is that people like to go to the extremes! They approach him and then talk really slowly to him stretching their mouth out making it difficult to lip read. He tries his hardest to repeat the word back. It is not going to sound anything like what the person is trying to get him to say. The sounds that he makes is Ba, occasionally Ma and some sounds that come from his throat. You know, like humming. He is not a mute. People are surprised that he makes noise. I think this is one of the most common misinformed pieces of information of deaf people. If they are not doing that they will shout - distorting their lip patterns, again this makes it difficult to lip read.  He is deaf you know, not stupid so just talk normally or just a little bit slower. Not too slow as this makes YOU look really silly. Don't be afraid to tap him on the shoulder to get his attention, it’s OK and helps. Waving is mighty handy as well. Yelling at him from behind does not work even with his new hearing aids in. Just because he has those in does not mean he knows what he hears. Every sounds he hears is brand new and he can not distinguish what is what.

Bebo has done well with simple gestures. That is all China taught him the whole 7 yrs he was there. OK, they found out we were coming so they scrambled and taught him a few "signs". He is signing more and more thanks to his amazing school and the signs that we've taught him at home.

Quote:

"For Hearing People Only" (Third Edition) by Matthew S Moore and Linda Levitan. With a foreward by Harlan Lane. Both are Deaf so forth, Linda is Latened Deaf.


Think about the last time you used the word "dumb". you used it to describe something stupid, clumsy, or foolish, right? A century ago, this term was in common use. Nobody thought twice about its propriety. It's outmoded now, and insultingly inaccurate. We're aware that this term is still used in England to describe someone who is deaf, but that doesn't say much for the discernment of those who persist in using it. As for the correct term, why not simply say "deaf"?


"Mute" prefers to someone who cannot talk, that is, produce intelli-gible speech, or someone who has malfunctioning or missing vocal cords. "Mutism" is a medical or psychological condition_the inability or refusal to produce sounds. Virtually all deaf person are physically and psychologically normal in this area. They have vocal cords and voices, just as the vast majority of hearing people do. This also applies to deaf people who prefer to communicate exclusively in sign language. Their vocal apparatus is perfectly normal. But, being deaf, they cannot hear themselves talk, and thus, cannot easily modulate their voices. Consider: If you were born deaf or became deaf as an infant and have never heard yourself talk, it's extremely difficult to talk clearly, with normal intonation. So signing is the natural mode of communication for many deaf people; speaking can never be. A few deaf people have good clear articulation better than some hearing people but most don't. It's a matter of personal preference, deciding what we feel most comfortable with.

We dislike these terms because they now convey a negative attitude. "Deaf and dumb" does not connote pride or wholeness. It conjures a pitiful, pathetic, dull-witted image, with a hint of subnormal intelligence. "Deaf-Mute" suggests that a deaf person is doomed to a life of silence, without speech, without hope. We've run into these terms repeatedly, and we find them annoying, inaccurate, and insulting.

Hope this information helps. :)

Goal!

We had a busy weekend of soccer! Both Spitfire and Bebo play Saturday mornings, usually back to back. This past week Spitfire's soccer game was first. She played great once we were able to get her out onto the field. See, the child is extremely shy and needs to warm up to people. If there is a crowd of people it makes matters worse. I could never see her doing dance! LOL She would just stand on stange with her arms folded a crossed her chest.

Here she is fighting for the ball down near her teams goal.

 Celebrating her first goal of the game!

Running to her coach after her goal.

Bebos game was right after hers. In fact we had to leave her game fifteen minutes early. It really didn't matter as I had watched her kick in 6 goals! She has really blossomed into a much better soccer player this year. Dad and Spitfire came to Bebos game right after and informed me that she scored two more goals for a total of eight goals for the day! WOW!

Bebo did really good as well. He played really hard and almost kicked a goal in. He loves to play soccer but he needs to build his stamina and remember to look up even when he thinks they are not playing. It will come in time. It was only his second game. The kids on his team are great as well as his coaches. We have been really blessed so far.

Look at him run!

Oh so proud! (Love that smile!)

Waiting for his turn to go back in.

Both kids would love to have a practice or a game every night but this mama is happy we don't ! LOL I do love to watch them though.