Katy's school pictures

Quit my job

It got to be too much for me. I just couldn't keep all the plates spinning. It started out as only 4-5 hours a day 4-5 days a week, but as time went on it began to change. I was getting a set amount of money for that and as my hours increased my pay remained the same and then actually began to decline. I was making about $2 an hour and I will not work for that! Also I showed up to work one day and they were fighting and trying to draw me into the fight. They started screaming obscenities in front of J.D. and I spoke up and said I would not tolerate that. My last day is Friday and I am relieved and at the same time will miss the kids and the extra money that I was making although towards the end that wasn't much.

Happy Birthday Katy!

Today my tiny girl is 5 years old! I can't believe she is already 5. She is home sick from school today as she was last year. She is doing the mystery fever thing again. Maybe she will not do it as much as last year. I honestly don't know what to do about it and neither do her doctors. She is on antibiotics now because her white blood cell count is up indicating the presence of an infection. I will also put her on some coconut yogurt and probiotics to counter act the negative effects of the antibiotics. She vomits and doesn't digest her food well when she is running a fever so she loses weight and she can't really afford any weight loss as tiny as she is. She is 24.8 lbs only 1 lb more than her baby brother. Everyone is beginning to ask if they are twins because they are almost the same size. She has a follow up with her endocrinologist scheduled for March. He is tracking her growth and at her last appointment he said that she is small statured, but growing at the same rate as other children her age so no reason to be alarmed. Her growth hormone levels were normal when we checked them and her bone age was within normal limits meaning that her bones are growing in a normal way. Delayed or accelerated bone age is a sign of trouble so she is good on that front.

interesting story

I saw this on Yahoo!News today and thought it was interesting. Maybe the public schools can take notes and learn from this to help these kids. Being understood really goes a long way to teaching someone. If someone feels they have to keep their guard up all the time to avoid sensory overload and miscommunication and bullying they have a real hard time learning. Sean's school is very individual in their approach to the children's needs and focuses on each child's strengths and weaknesses. It has really made a huge difference in his ability to learn. His teacher and aides really seem to understand. Since starting there he is making great progress. This morning he wanted me to blow up a balloon. He gave me a balloon and said, "Momma". I said, "Do you want me to blow up a balloon?" He said, "mm-hmm." I started to blow it up and he said, "Make it big please!" and threw his arms out to indicate big. I was so proud of him I could burst! We actually had a conversation, YAY!

Good news

I got a call this afternoon from a man named Bobby Johnson. I had no earthly idea why a Bobby Johnson from Minnesota would be calling me. He explained that his family was featured in the same episode of Real Families Real Answers that we are and he just had to call me to say how much our story had touched him. He said that the episode had already showed and we didn't even know because it was supposed to be on in December. We looked it up online and watched it and let me tell you it is GOOD. Get out the tissues and have a watch. Go to http://www.byu.tv and go to Tune in now BYU television and click the link. Then go to the listings and go to Saturday October the 4th at 1:30 pm. This is a powerful episode and is almost exactly what we prayed for. The expert they had commenting has a bit different view of autism than I do so please don't think that I agree with her. You do NOT lose your child when they have autism which she called a chronic mental illness, I do not feel it is a mental illness, but rather a different way of being. I hope that other families will be reached by our story. Please pass this along to anyone you know who might need it.

Edited to add: Try this link and go to October 14 at 8:00pm.

Dave Ramsey's site

William and I have been doing Financial Peace University at church. This is a class to teach us how to handle our finances in a way that allows us to meet our needs, honor God and build wealth over time. It is really making a difference for us and we are learning so much. Dave Ramsey made millions in the real estate business and lost it all during the housing crunch in the 80's. He fought tooth and nail to come back from financial ruin and now is sharing his insight with others who want to succeed the right way. He, being the financial common sense go to guy, now has on his site his take on what we as a country should do about the so called financial crisis. I have e-mailed all my congressmen about this and I pray that the right thing will be accomplished. If Americans would wake up and read their Bibles they would see that the borrower is slave to the lender and strive to never borrow again. William and I have made a pact to never borrow again with the exception of a mortgage that we can afford and we will work our butts off to pay that off early. Peace comes with knowing that no one can come and take the stuff you worked so hard to earn for your family. The following is his common sense plan to get out of this mess:

Years of bad decisions and stupid mistakes have created an
economic nightmare in this country, but $700 billion in
new debt is not the answer. As a tax-paying American
citizen, I will not support any congressperson who votes
to implement such a policy.  Instead, I submit the
following three steps:

Common Sense Plan.

I. INSURANCE

A. Insure the subprime bonds/mortgages with an underlying
FHA-type insurance.  Government-insured and backed loans
would have an instant market all over the world,creating
immediate and needed liquidity.

B. In order for a company to accept the government-backed
insurance, they must do two things:

1. Rewrite any mortgage that is more than three months
delinquent to a 6% fixed-rate mortgage.
a. Roll all back payments with no late fees or legal
   costs into the balance.  This brings homeowners
   current and allows them a chance to keep their homes.
b. Cancel all prepayment penalties to encourage
   refinancing or the sale of the property to pay off
   the bad loan. In the event of foreclosure or short
   sale, the borrower will not be held liable for any
   deficit balance. FHA does this now, and that
   encourages mortgage companies to go the extra mile
   while working with the borrower—again limiting
   foreclosures and ruined lives.

2. Cancel ALL golden parachutes of EXISTING and FUTURE
CEOs and executive team members as long as the company
holds these government-insured bonds/mortgages.  This
keeps underperforming executives from being paid when
they don’t do their jobs.

C. This backstop will cost less than $50 billion—a small
fraction of the current proposal.




II. MARK TO MARKET

A. Remove mark to market accounting rules for two years
 on only subprime Tier III bonds/mortgages. This keeps
 companies from being forced to artificially mark down
 bonds/mortgages below the value of the underlying
 mortgages and real estate.

B. This move creates patience in the market and has an
 immediate stabilizing effect on failing and ailing
 banks—and it costs the taxpayer nothing.




III. CAPITAL GAINS TAX

A. Remove the capital gains tax completely. Investors
 will flood the real estate and stock market in search
 of tax-free profits, creating tremendous—and immediate—
 liquidity in the markets. Again, this costs the
 taxpayer nothing.

B. This move will be seen as a lightning rod politically
 because many will say it is helping the rich. The truth
 is the rich will benefit, but it will be their money
 that stimulates the economy. This will enable all
 Americans to have more stable jobs and retirement
 investments that go up instead of down. This is
 not a time for envy, and it’s not a time for politics.
 It’s time for all of us, as Americans, to stand up,
 speak out, and fix this mess.

It's show time

I got an update from Real Families, Real Answers. The show will start airing this week on ByuTV. Which is Dish Network channel 9403 or DirectTV channel 374. It is also available streaming on the web at http://byutv.org/streaming/

The schedule is as follows:

Tue 9/23 8:00 pm and 9:30 pm Episode 1 Strengthening Families, part 1

Tue 9/30 8:00 pm and 9:30 pm Episode 2 Strengthening Families, part 2

Tue 10/7 8:00 pm and 9:30 pm Episode 3 Protecting Family Time

Tue 10/14 8:00 pm and 9:30 pm Episode 4 Managing Our Emotions

Tue 10/21 8:00 pm and 9:30 pm Episode 5 Keeping a Marriage Strong, part 1

Tue 10/28 9:30 pm Episode 6 Keeping a Marriage Strong, part 2

Tue 11/4 8:00 pm and 9:30 pm Episode 7 Effective Parenting

Tue 11/11 8: 00 pm and 9:30 pm Episode 8 Parenting Teens

Tue 11/18 8:00 pm and 9:30 pm Episode 9 Family Finances

Tue 11/25 9:30 pm Episode 10 Strengthening Blended Families

Tue 12/2 8:00 pm and 9:30 pm Episode 11 Successful Single Parenting

Tue 12/9 8:00 pm and 9:30 pm Episode 12 Avoiding and Overcoming Pornography

Tue 12/16 8:00 pm and 9:30 pm Episode 13 Family Crucibles

We are featured in episode 13, Family Crucibles. Please try to watch this show and please pray that families will find the support and information they need to be successful in this crazy world. Here http://www.youtube.com/watch?v=kU4MTl4FN84is the promotional video.

The new civil rights movement

God doesn't make mistakes. EVERY person has a purpose whether or not they know it or live up to it. I am so excited at the prospect of one of us(Special mommies) making it to the White house. I pray that God's will be done for this election and for all the critical issues the country is facing at this time. Please take the time to check out this article about Trig Palin, Sarah Palin's 5th child. I was going to vote for McCain before he announced his choice for VP, but now I am actually excited about the prospect of voting now. I will not agree on all the issues with the McCain/Palin camp, but this is one I can honestly say I support because I am also a "Bulldog with lipstick." I have fought tooth and nail for a better life for my kids and I hope that the administration of the country regardless of outcome of the election will join that fight. Those who face challenges deserve a life that is cherished, honored and respected. They deserve to have free will and dignity, not to be incarcerated because the Government funds institutions but not community supports.

I just got busier

I got a part time job to make ends meet. I am taking care of 3 little kids in the afternoons at their house. I saw an ad in the Buy Sell Bulletin asking for someone to watch children in their home and called. I interviewed and she chose me as soon as she talked to me. The children have some minor special needs and she was very cautious about a sitter for them. She said I was a perfect fit for them because of my experience as a mommy to special kiddos. I started last Monday. I am working from 2-5:30 on most days. The 2 younger kids are 1 year old preemie twins and the older is a 5 year old kindergartner. He gets off the bus at around 4:00. I take J.D. with me and then William comes to get him when he gets off work. If he was to work overtime I would pack up the babies and go get Sean and Katy off the bus and head back over well before it is time to get the other little boy off the bus. I prepare for dinner ahead of time so I can just throw something together when I get home and so far everything is running pretty smoothly.

Please pray

Gustav is gearing up to hit the gulf coast. The people who live there are still putting their lives together from Katrina. Pray for wisdom, strength and direction for them and pray for a weakened storm. My daddy got called up in the National Guard to go to New Orleans to be on standby, please pray for him as well. He is finally doing what the intended purpose of the Guard is. Also please pray that we will not have major flooding and tornadoes from this storm here. I will probably plan to be away from home during that time as we live in a mobile home and I am terrified of this sort of thing anyway.

Sean is talking!

Sean began saying a few words back in December and stayed there for awhile. Then over the summer he began to say a few more words and now he is coming up with something new every day. Today he got off the bus and walked over to the DVD player, picked up his "Big Bird Gets Lost" DVD and handed it to me and said,"Big Bird". So of course he got to watch Big Bird! I am so glad he got into camp this summer because he had a great summer and I think that is why he is trying so hard to speak.

Unidagnosed syndromes you tube channel

We are a part of a non profit organization called SWAN USA(Syndromes Without a Name, USA). They have a you tube channel and there is a slide show there that explains what they are for and shows the kids. Katy is on there. I know these kids from talking to their moms for years and we have grieved together as we have lost some over the years. That is the most tragic thing when you talk about undiagnosed kids, they face terrible challenges and the doctors don't know how to help. Please consider shopping online through I-give and designating funds for SWAN USA. This organization is on a crusade to help researchers and doctors help these kids by finding out what is wrong. They also try to educate parents and caregivers on where to go for help.

Update from Real Families Real Answers

I got an e-mail from Blair Treu about the documentary that we filmed for last August.
Here is the letter I got.

To all Families and Scholars who participated in the Real Families, Real Answers documentary series;

Thank you so very much! I’m sorry for the impersonal nature of this letter, but I want to get the word out quickly. Here’s an update on the progress of the series.

We completed principal photography on the Series in December of 2007, and we’ve been busy in the edit rooms ever since. You’re effort and patience with us in this process is about to pay off.

Promotional advertisements for the Series are now playing several times a day on both BYUTV and KBYUTV. If you tune in, you may see yourself or members of your family! If you don’t see yourself, don’t worry, the promo is only 5 minutes long and there was no way to represent all families that participated in all 13 episodes. Tune in beginning September 23 at 7:pm, as we begin to air Real Families, Real Answers in its entirety, and keep an eye out for your family (see table below). Please check local listings or www.byutv.org for more accurate updated information as the broadcast dates draw near. (Scholars, I’m sorry you are not listed in the table below, but I believe most of you are aware of the shows in which you were involved, so just check the shows by topic)

RFRA Series Show Order Air Dates Guest Families

1. Strengthening Families Pt. 1 September 23, 2008 Wiginton/Bennett/Cousin

2. Strengthening Families Pt. 2 September 30, 2008 Wiginton/Bennett/Cousin

3. Protecting Family Time October 7, 2008 Chapman/Cahan

4. Managing Our Emotions October 14, 2008 Giddins/Candland

5. Keeping a Marriage Strong Pt. 1 October 21, 2008 Skolaski/Jackson

6. Keeping a Marriage Strong Pt. 2 October 28, 2008 Chase/Frandsen

7. Effective Parenting November 4, 2008 Rowe/Howard

8. Parenting Teens November 11, 2008 Parsons/Brooks-Nichter/Willis

9. Family Finances November 18, 2008 Hughes/Beverly

10. Strengthening Blended Families November 25, 2008 Webb/Hill-Mullford

11. Successful Single Parenting December 2, 2008 Newell/Dico

12. Family Crucibles December 9, 2008 Johnson/Bussey

13. Avoiding/Pornography December 16, 2008 Hughes

Additional Air Dates (General Conference)

Protecting Family Time October 5, 2008 Chapman/Cahan

Managing Our Emotions October 7, 2008 Giddins/Candland

There are additional broadcast dates for KBYUTV, BYUTV-HD, through this same time period. BYUTV International airings will start world wide in January 09. The series will also be available on other PBS affiliated stations across the United States in 2009. DVD sets are anticipated to become available in early 2009. After the series has been delivered for distribution, I will TRY to get a DVD to each of you who have participated in the series as a special thank you.

You can watch byutv online at their webiste here.

Special Needs ministry

William and I have felt for some time that God is calling us to start a special needs ministry in our area. We are gathering information and praying for guidance on where to go with this. We know that families with disabled members usually don't make it and the divorce rate in this group is 80% or more. We also know that 80% of families with an individual affected by disability are unchurched. I really think that if we as churches do something about that then the divorce rate would most certainly improve in this "unreached people group." Missionaries travel the world to reach "unreached people groups" and we have a huge one living in our very own communities. So why are these families unchurched? From my own experience the churches are simply not meeting their most basic needs for accessibility and understanding. In short they are not meeting them where they are and not even trying to find out how they can help. So what does a family affected with disability need in a church? Well that all depends on the nature of the disability and the needs and personality of every member of that family. This is why no one gets anywhere, how do you prepare for the unknown? The answer lies in scripture. Paul said he was all things to all men so that they could know the love of Christ Jesus. And in Matthew Jesus said that in order to enter the kingdom of Heaven we must become like the little children and those who cause these little ones to stumble might as well have a millstone on their neck and be tossed into the ocean. Now that I think of it, that is exactly how I felt when I was not being met where I was at church, I felt like I was drowning in despair. If the very people who are the temple of the living God are not sharing that love with these families where can they go? The world out there is certainly not going to sustain these most blessed families. God's strength is made perfect in weakness and a person with a disability illustrates God's perfect grace in everyday life. Check out this link on how one church is making a difference in this area.

Check this out!

During the conference there was a young man running around getting pictures of all the children. He was so friendly and truly saw the beauty in those kids. At the concluding breakfast he presented the photos he took and told us about himself and the company he founded. He is a fashion photographer who grew weary of being told what was beautiful and disgusted at how fickle the concept of beauty seemed to be in that industry. He had a wild idea to try to change that and decided to take photos of people the fashion world might reject, but he saw their beauty shine through and wanted to share that beauty with the world. Katy is in his slide show on his website here.

The Conference was awesome!

We met so many families facing many of the same challenges that we face on a day to day basis. I met some people who I am sure will be life long friends. It was so nice to go to a place where no one looks at my kids like they are strange and ask rude questions. Everyone was so nice and I could see so much of Katy in those kids. They had her unstoppable joy and spice for life and many shared gait and mannerisms with her.

We saw 2 geneticist and a GI dr at the conference who offered some great suggestions for Katy's care and will contact Katy's drs about recommendations. We did not get a definitive diagnosis though and will have to wait longer for answers. The geneticists said that she definitely has some features of CdLS, but also has some features that are inconsistent with CdLS, so they can't say for sure until we rule out some other syndromes with similar features. The other syndromes suggested are Rubenstein-Taybi, Floating Harbor, and Seckel Syndrome.

Rubenstein-Taybi is very rare and I really do not feel that Katy has this. There are many characteristics that just don't fit Katy. Floating Harbor does have some familiar characteristics, but also some that just don't fit. Seckel Syndrome is a type of primordial dwarfism and is also very rare. She does look a little like these kids, but they have thin, fine hair and she has lots of thick hair. They are also much smaller than Katy. These syndromes will be suggested to Katy's geneticist and we will test for them. If we get negative test results they suggested that CdLS should be a good diagnosis for her. We are scheduled to see Katy's geneticist in September, but after the Foundation contacts her she might want to see Katy sooner.

Chicago Here we come!

We are going to attend the CdLS National Conference in Chicago. When I heard about the conference I was racking my brain trying to find a way to go. We are broke and haven't been able to go on vacation since having children. We really need to connect with other families facing similar challenges and Katy needs to see experts who can finally give us an answer to the question of whether or not Katy has CdLS. The CdLS Foundation has a scholarship program to pay for the tuition for first time attendees so I applied for that not even knowing how we were going to pay the rest. I prayed and prayed and God kept speaking to me in our quiet time that He would provide because He has a purpose for us at the conference. I then learned that one of the speakers is the author of a book called The Unexpected Journey: Special Paths With Special Children and is going to speak on that topic which fits right in with the ministry that God is calling us to start in our area. I prayed "wow, you really know how to confirm something! Now show me how to pay for it." About a week later I stumbled across something amazing. There is a fund to help people with developmental disabilities in Alabama attend conferences. We will be reimbursed for almost all of our cost! We will fly out tomorrow afternoon from Birmingham to O'Hare and return late Sunday night. We will be staying here. It is by far the nicest place we have ever stayed in. We will also try to make time to go to the Beach on Lake Michigan. Katy will be having a consult with the medical advisory board and we hope we will finally get a diagnosis. Please pray for safe travel and opportunities to learn about God's purpose for our ministry and our family.

I feel very strongly about this

Short bus jokes and use of that horrible word need to be done away with. Check out this site.
http://stopsayingretard.wordpress.com/

Willam is gone for a whole week

He left early this morning. He is going Roxanna, IL with a group of short term missionaries called Carpenters for Christ. They will be helping a church build a new facility so they can meet the needs of their community. He has wanted to go for many years, but this year God worked it all out for him to go. He is so worried about me with the kids with no help, but I know I will be fine. I have plenty of people to turn to if I need help.

My photo shoot

When I won the radio contest I won a spa package and after all that pampering I looked great so William got out the camera and we went up to the top of Vestavia Hills and these are some of the pictures he took of me.

A new milestone?

J.D. is beginning to use the potty some. YAY! If he continues on his trend maybe Katy will follow like she did with walking.

Wow What a day!

Crazy me, I entered a contest on the only radio station we listen to and wouldn't ya know I won! Our radio station is WDJC in Birmingham and they are celebrating 40 years in ministry. They had a contest where you e-mail in how the radio station has made a difference in your life. Here is what I wrote:
http://www.wdjconline.com/page8_sub.php?id=91

Hi WDJC,

We are the Bussey family from Anniston.  WDJC has made such a difference
in our lives.  My daughter was born in November of 2003 with multiple
birth defects that are part of an undiagnosed genetic syndrome.  She was
transferred from our local hospital to Children's hospital when she was
just a few hours old.  That very long drive to Children's after spending
a whole night with her so far away was made bearable by listening to the
familiar, uplifting music we had grown to love over the years.  To our
pleasant surprise the NICU nurses had WDJC on in the unit all the time
so we could get the message we needed and be comforted by the familiar
music we loved amongst the unfamiliar chaos of the unit.  They were also
playing WDJC on the radio at the Ronald McDonald House in the common
areas and other families were just as blessed as we were to constantly
hear the message that no matter how bad things got, God was there and He
loved them.  The blessings we have been granted by the Lord have been
transmitted through your station for years.  Through all of the follow
up appts and long drives to Birmingham you have granted us strength and
brought our spirits up through your message of hope and love in Christ. 
We are stronger because of the ministry of your station many times over.

Another thing I would like to mention is that Mark Harris is also very
important to our family and has given us hope for the future with our
children.  We have 2 special needs children as well as one child that is
typically developing.  The song, "Find Your Wings" that he performed has
really touched us and changed the way we view parenting these very
special children and raising them "in the way they should go".  I have
for a long time wanted to tell him how important that song has been to
our family and we pray that we will have the opportunity to tell him
face to face at the WDJC Birthday party.

William and Jennifer Bussey and children

The party was awesome and I could listen to Mark Harris all day long!

Info on our home

Praying for a buyer

We have managed to pay off all our debt except our mortgage, woohoo! Now we are ready to move and have found a house that will meet our needs. It is in Saks, it has 4 bedrooms and 3 bathrooms(2 masters, one with a walk in shower with seat which would be perfect for Katy), a garage and fenced in yard. The payment will be less than what we were paying for all our debt payments before we paid them off. The problem is we can't buy it until someone buys our home. So please help us get the word out and pray for us.

An article that makes you rethink autism

While I don't agree with everything in this article, it does make you think. Why is different wrong or deficient? http://www.wired.com/images/press/pdf/autism.pdf

New movie

I have for a long time viewed autism differently than the general population. I do not see it as something that has stolen my child or a fate worse than death as I have seen it portrayed in mainstream media. Autism has been described by many autistic adults as being an essential component of their personality, comparable to gender. It colors every thought, every action and every reaction. I have long felt a kinship with Sean and other autistic people. I have read so much and talked to so many autistic people and feel that I am either autistic myself or at least have many of the characteristics. If I do have autism I can see how it is an essential component of one's whole being and can't be separated from who a person is. I do see the world differently than almost everyone I know and maybe that is because I am autistic. Do I think that autism shouldn't be treated? No. I really feel that with the right interventions and acceptance and support autistic people can live full, productive lives full of love and joy. What interventions are the right ones? I can't answer that because each autistic individual has different needs and strengths. Having a means of communication is probably in my opinion the most important thing one can teach an autistic person. The next most important thing is to approach behavior from a totally different perspective. Making sure the child medically, sensory and nutritionally healthy is also of vital importance. A child in pain is a child who can't learn and will act out. Much of what I have learned about myself I have seen first hand in my child. I am amazed at his brilliant mind and totally confused by his limitations, but I accept him as he is and try each day to let him know that I love him and will help him to the best of my ability. I ran across a website about a movie that debates these issues.

Sean's note from school

Sean came home from school today and as I was sorting through his things, I looked in his communication notebook. This is a notebook that the teacher and I can send back and forth explaining what he did that day, so we can stay on the same page. I was thrilled to read her note today.

"We had a great day! Sean has been talking all day. He said mama, daddy, Katy, pop and verbalized for a lot of other words, but couldn't quite get the right word out. We wrote that another child had lost a tooth for news time today. Sean got up and opened his mouth and put my hand where he had lost a tooth We wrote that in the news too!"

How's that for exciting! He is now up to over 10 words! Woohoo! I have dreamed of this for years and now I am just so proud of him.

A breakthrough, maybe!?

Sean is trying to talk!!! He can say some words on command now. He is saying "Sister"-while pointing to Katy, "Bug"(Katy's nick-name), "Daddy"-while pointing to William,"Mama"-while pointing to me, "Cru-tan"-while pointing to his baby brother(that is the baby's nick-name LOL, don't ask!), "Cocoa"-while pointing to his new cat, and "Bubba" while pointing to his cousin (again a nick-name). He just suddenly started doing this, wow! This is the best he has ever done with speech. Maybe we can build on this and ease some of his frustration to stop this behavior problem of his. I am looking feverishly for any idea of how to help him with his behavior. There is not a lot of research on what really works and I have no idea how insurance coverage works for all this.