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. :)

Never Underestimate

Never underestimate someone/something based on what is on paper! So many people let their fear stand in the way of some really beautiful moments. They depend on experts to know what is best and to know it ALL!

Here is our daughter who we were told would NEVER speak! That very doctor that told us she would never talk made a statement (in a condescending tone) that spoke volumes to his personality. This is his statement to my husband and I, "And you adopted her knowing all of this?" I really wanted to scream at him what makes her less desirable than any other child? We wanted a child and she needed a family. She has medical needs that take lots of time and patience. We prayed and knew this was our child! He obviously only saw her as a medical case not a child who was loved dearly already.

Twink has made HUGE gains in a years time (she's been home now 32 months). Actually it has been the last 3-6 months where she has blossomed in her vocabulary.  In another year, I plan on sending a video to that doctor to show him just how well she is talking. I think they way he treated us was wrong and I plan on telling him.

Oh the first statement she makes is she wants to see the picture and then she wants to see *** (herself).

Coming Up For Air

Wow, life has been rather busy around here! Yesterday was the last day of my ASL class. It was a five week class that met M-Th for two hours in the a.m. I must give a shout out to my wonderful daughter Jewel who made it possible for me to attend this class. Everyday for the last 5 weeks she was up at 7:30 helping to get the littles off to their summer programs. She knew how important this class was to our family and she really stepped up. Teens don't like to get up that early in the summer but she did it without complaints. Much love to to her!

Both Bebo and Twink have 6wks of a summer school program so they do not regress in the things they have come so far in. They have one more week left and then a couple weeks off before the school years starts back up. Dash and Spitfire both had 4wks of summer time fun at the local school. It was almost like a day camp. Dash attended a sheriffs camp and totally loved it. Jewel has had a friend pretty much live here for the summer. I call her our fourth daughter as she says with us four to five nights out of the week. Jewel attended field hockey camp for 4 wks and their season will be starting in two weeks.

We've had a few bites on our house but they have totally low balled us. They offered 50 G's less than what we were asking after we lowered the price. I'm content to stay here for the school year and maybe try again after the holidays. It's so stressful living limbo.

I've started two home based business (no I'm not doing photography!). I love them both and am doing very well with them. I'll tell you more about them in my next posts. I'll also update you more on Bebo and Twink. There has been some amazing stuff going on there!

Oh and I'm sorry there are no pictures but I have not taken any since I started my class! I know, bad mamma!

Anybody Still Here?

Quick update before I head off to bed. First I can't believe it has been a month since I've last poseted! I've been without my computer forever. I am using dh's and it is not my favorite. Mine had mulitple viruses on it and has since been fixed only now I have a black screen with some error message. Hopefully it will be fixed for good this weekend. It is probably for the best as I have started my ASL (American Sign Language) class at the college. I am in love with this language. I'll have more on that later.

We are alive, doing much better emotional as well. Between field hockey, swim classes, summer enrichment classes, summer school for Bebo and Twink, and trying to sell our house it has been insane. I hope to be back soon! I miss you all. :(

Wordless Wednesday

Virus Alert!

I have a virus attacking my main computer. If you receive an email from me today, PLEASE do not open it!

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

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Looking Fear In The Eyes

Have you ever looked into an animal or a persons eyes and seen fear? I don't mean just any fear, I mean shear terror? I have and I see it more than I would like.

Twink has an extreme fear of doctors, dentists, etc. She is fine walking into the office but as soon as it is time to head back for her to be weighed and measured it is a total melt down. This is where her fear starts and my lack of muscles come into play. As long as it is a routine check things are pretty good. I call pretty good screaming, crying, and kicking. If the visit is one where she needs to be held for something then it is a different story.

Twink does not like to be restrained. It does not matter if I do it or someone else does. For the record, I prefer to be the one to do as I can be the one who looks into her eyes and talks to her. She has had so many tests where we have had to hold her. Numerous sedations, Castings, Botox, EKG, Echo, X-ray's, Lab Work but the worst two have been the EEG's and her eye exams. Both have to deal with her super sensitive head which has major sensory issues compounded with us holding her down. She goes into this fight or flight response. The only thing is she does not do the OR it's both!

Holding her for these procedures is nothing short of a miracle. The physical strength this child demonstrates during these times is mind boggling. It takes every ounce of energy and all my strength to hold her. Most times that is not enough.

Looking into her eyes during those moments breaks my heart. She looks like a scared trapped animal looking for a way out. Many times I have to look away when she is like that. You see her fear, her terror in her eyes. They are scanning the room searching for a way out. Searching for a reason as to why this treatment is being done. Soaking in every face that is doing this to her. Screaming at the top of her lungs that it hurts and she does not want it. Shaking her head back and forth. Her face soaked with tears and snot streaming down her face. It's all I can do not to cry with her. I know what they are doing is only helping her but times like those it's hard. It's hard to see her react like that.

All is better within a few minutes of each procedure with a little love and some holding. Oh how we dread those appointments though.

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.

Favor Please

If you have our old blogs linked on your side bar can you remove them and replace it with our new one if your inclined to. I really don't mind if you put the new one up I just really don't want the old one up. Many thanks from our family! :)

Oh and for some reason I've lost some of you comments from the last post.

New Glasses!

Twink received her new glasses yesterday. I'd like to say it went without any tears but anyone with a child with sensory issues knows that was not the case. She hates it when anyone does anything with her head. We've finally arrive to a point where brushing her teeth is not a fight but it took a TON of therapy. Brushing her hair is good as well but that too took along time.

When we placed the frames on Twinks face she went into hysterics! She kept screaming, "I don't wan em" over and over. I whisked her out of the building and brought her home where everyone was roasting marshmallows. That seemed to calm her down a bit. Give her food and she is happy as a lark. I started to notice she was looking all around taking it all in. You could tell she sees better. 

Today she has only told me a few times that she did not want them but there has been no tears! She off playing and having a great time. We will beat those sensory issues yet!

Baby of The House

Twink is the baby of the house when it comes down to the ages of all of the children. I've been thinking about something for now for awhile. When we decided to adopt last time we knew we were going to go older and in between Spitfire and Dash. I've always felt that Twink needed to be the "baby" of the house.

It was my thought that she would not do well with someone younger than her. When in fact she actually plays better with a child that is a year or two younger than her. See I believe it is more my own fear that plays into that mind set.

The thought of Twink having a younger sibling makes me quite sad. The thought of that sibling one day surpassing her in something just does not give me warm cozies. We recently had a little tike (almost 1.9 yr old) over at our house and I could not believe how well she was talking! Made my stomach kind of ache. Then I did a little dance for how far our girl has actually come. My niece Special K who will be 1 yr next month is pooping in the potty! Ummm, I can't for the life of me get Twink to poop in the potty. She is fully pee trained but no poops. I actually think she is withholding.

When I get frustrated people feel the need to remind me that Twink either had a stroke or has cerebral palsy. REALLY!! I forgot that tiny tidbit, thanks for reminding me. It's pretty hard not to compare your 4 1/2 yr old to a younger child who is far exceeding what your child is doing. Most days I'm fine but there are days that are harder than some.

Twink just has her own rhythm that she moves to! :)

Who's The Boss?

 Twink signing to Spitfire "Stop"!

If you answered either Spitfire or Twink than you must know that these two little girls are making us crazy lately! They both think they are the boss of the house. Between the tattling, yelling and face making we need to keep them separated. Only problem with that is they look forward to playing with each other when they get home from school. Spitfire is the culprit for most of the problems, as she like to be the instigator. Boy does she know how to get under Bebos skin!

Apparently Miss Twink thinks she is the boss at school as well! I received a note home stating that her speech is exploding. Not only that she is bossing her teacher around and tattling on the other children. I'm sure they think it's cute but we don't. I'm going to have to make sure they do not continue to allow either behavior.

We really can't put our finger on when Twinks language took off but she is really talking up a storm. She is talking in sentences and we can usually understand what she is saying. We saw three different older children that we had not seen since last fall and when they heard her talk they were shocked. The first thing they said is, "She can talk now?" Can you imagine how proud I was to say yes! :) We're loving it but holy smokes this child can yell momma for a long while!

Please Read

The reason for moving my blog address and giving my children nicknames is because they are getting older and I wanted them to have a little bit of privacy. We've also had a peeping Tom snooping around our house. Jewel saw heard this person knock on the window downstairs shortly after we arrived back from China. This is not the first time we've had one. Jewel waited almost two weeks to tell us about the incident. It did freaked her out quite a bit.

I'm also very careful not to blog where we live. I always say north east but never give my state. If someone does place where live in their comments I will not be able to post their comments. Same with the kids real names. We can never be too careful when it comes to safety and our children. I went to an internet safety awareness at the kids school and it really opened my eyes.

I also just wanted to move so that I had a bit more freedom to post my feelings. Now that family is one blog and adoption community/friends is on another I don't have to worry and can be even more open. I can touch on a few things that I wouldn't if the family were to read.

So please, use the nicknames and if you know where I live please do not post it or I will not be able to approve your post. I hope that clears up why I moved and why I am using nicknames. :)

*So I was the first offender of using the kids name! LOL Thanks Carla for giving me the heads up.

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. :)