Coming Together

Ya know all of those balls that I always seem to have up in the air.  Well, I know I will always have a few up there but some are finally coming down. 

Easing back into my normal routine is getting a little easier to do.  I’m not so gung-ho.  I still wish I could be skinny by summer but don’t we all .

I have a month left of spring classes, and I pretty well have my Fall of 08 class and my Spring of 09 classes figured out.  Then I’ll graduate and be done…probably for forever.  My job is just too perfect to let go.  And I’m watching people retire from here, after only 20 years, with over half a million dollars.  Now if that isn’t an incentive, I don’t know what is.  To retire at 50 with a nice little nest egg would be suh-weet!!  I know I’d still work if my health will permit, at least part-time, to keep my brain from petrifying.  But I could have more time for Kevin, Matty, my grandbabies, hobbies, and what-not.  Maybe I’ll even get a chance to go to Guatemala and visit Theresa and all the orphans she will be taking care of .

Kevin starts back to work tomorrow.  Ya know…I don’t know if I’d want to start a job on April Fools Day.  Nothing would be worse than to walk into your first day of work and they tell ya, “April Fools’!  You don’t really work here.”  He is so stoked to be going back to this job.  He has been gone for four years cuz the old manager acted like Hitler.  Ya know I think I posted about that already so I won’t go into details.  Sorry!  I still have post hysterectomy brain…it’s kinda like pregnancy brain.

Ya know I probably have more balls coming down but I can’t remember what they are cuz my tummy wants ice cream.  I got my priorities guys .

…and these are the days of our lives

I don’t watch the soap opera but when I was thinking of a title that is what crept into my brain, with music and everything. 

I have beyond awesome news.  My little brother proposed to his girlfriend of 2+ years, Friday night, on a bridge, in Phoenix.  Of course she said, “Yes!”  I’m still stoked even though I knew what she would say.  

I have 2 adopted brothers and I’m much closer to my little brother.  My other brother has always been extremely independent and head strong.  We have hardly anything in common though I still love him to death.  I think with me coming in and taking the “oldest” spot away from him caused an irreparable rift.  We just never had a chance to bond when I was living at home. 

I did with my little brother though.  I babysat him a lot when I was a teen because there is a 9 year difference in our ages.  That protective sister feeling has never gone away.  I have watched his girlfriends with a wary eye.  The one before this was a doozy.  She dissed everything that my little bro did; his guitar, his college major, his friends, where he worked, even his faith!!  Dumping her was the best thing he ever did. 

It was quite a few months before his met his current girlfriend/fiancee.  I watched her with an eagle eye but she was an angel.  She treats him great, lets him be his silly self, and he does the same for her.  They both attend different university’s so they live about 4 hours apart but they spend every second they can together including all holidays.  So he has brought her home a lot.  She just totally rocks and I’m glad she will be joining our crazy family.  My parents got lucky.  Out of three kids they love the spouse choices all three kids have made.  That rarely seems to happen these days!!

In other news….Matty played a board game with me yesterday.  We played Qwirkle.  We got it for Christmas but I have no clue from who.  Rachel wanted to play a game with me and we hadn’t opened this one yet.  We were getting the blocks out and Matty actually said, “I wanna play!”  I about fell over.  Rachel told him to come on up and join us.  I told him we needed to put the blocks with the black side up and he did!!  I passed out his six blocks fully expecting him to spend the time twirling them.  Nope, he stood them up facing him just like we had ours.  I had to help him take his turn but he was involved.  He got his blocks out of the bag when he finished playing.  He told me where the blocks should go (he was usually wrong but who cares…lol).  I was in shock.  I’m going to have to play it with him more often.  He had a ton of fun. 

Lauren and Austin were at a hunter safety course all day yesterday.  I thought they would end up bored out of their minds but the college designed it to where it was a lot of fun for the teens.  They did have to take tests along the way.  One of the tests Lauren got an A+ on while Austin got a 92%.  She is still ribbing him on that one.  They are both ready to go on their first hunt.  I’m still amazed that my little diva wants to shoot something.  I guess I’m more of a diva than her because I refuse to go hunting.  I love target shooting but not killing live creatures unless I’m desperate for food.  

Today is the last day of spring break.  School and soccer start back up tomorrow.  I am also supposed to start back full-time at work.  I have a ton of assignments I need to wrap up today, that are due tomorrow, so I better get to them.          

Autism Awareness 2008

April is National Autism Awareness Month in the United States.  I searched all over the place to learn who declared this but couldn’t find anything.  Does anyone out there know where I can find the statement declaring this?

Also, the UN declared April 2 as World Autism Day. 

The vast majority of my readers have an association with autism.  There are probably more autism visitors than fragile x visitors.  Fragile X syndrome is also associated with autism.  Both of my fragile X children have autistic features and I think that Matthew might also have autism.  I just don’t get him tested because it won’t change anything.  Matthew loves things that spin.  He stims and has meltdowns.  He bites himself.  He is majorly delayed.  He hates eye contact.  Rachel flaps her hands and stims.  She also fights eye contact. 

So I wanted something different for my blog for April.  I did a little digging on the internet and I found an awesome sight that has fragile x and autism graphics.  There are much more autism graphics.  They are unique and gorgeous.  There are graphics for those who have autism, grandparents, aunts, parents, and even friends.  There are statistical graphics.  Some graphics give facts.  Some state the love of a child with autism: daughter, son, children, twins.  There are those that focus on aspergers and pdd-nos.  Some have pictures of adult children, young children, babies, teddy bears, etc.  And if you have a myspace account there are even layouts.  Check it out.  It’s fun .  Autism Awareness Graphics .

Some examples:

     

Jake’s Run

I learned Thursday morning that one of my favorite real life fragile X stories is being filmed and is coming to TV on Fox, in the U.S. in January 09!!!  I’m so excited

It will be a made for tv movie.  One of the main writers is Brian Bird.  He is more famously known for some Touched By an Angel and Step-by-Step shows that he wrote.  He did an interview Tuesday on a blog titled Alien Dream if you are interested in learning a little more about him and the project.

The movie focuses on the real life story of Jake Porter.  Jake Porter has fragile X syndrome.  Jake was featured on Oprah.  He received a sports award (but can’t remember the name of it…sorry).  He also had a huge article about what happened in Sports Illustrated which I included below.  BTW…my old pastor was so touched by the story that he even devoted a sermon one Sunday to the topic.  This boy touched so many people and lives ,just by being his fragilistic self.

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The Play of the Year

Posted: Wednesday November 13, 2002 9:35 AM

Jake Porter is 17, but he can’t read, can barely scrawl his first name and often mixes up the letters at that. So how come we’re all learning something from him?

In three years on the Northwest High football team, in McDermott, Ohio, Jake had never run with the ball. Or made a tackle. He’d barely ever stepped on the field. That’s about right for a kid with chromosomal fragile X syndrome, a disorder that is a common cause of mental retardation.

But every day after school Jake, who attends special-ed classes, races to Northwest team practices: football, basketball, track. Never plays, but seldom misses one.

That’s why it seemed crazy when, with five seconds left in a recent game that Northwest was losing 42-0, Jake trotted out to the huddle. The plan was for him to get the handoff and take a knee.

Northwest’s coach and Jake’s best friend, Dave Frantz, called a timeout to talk about it with the opposing coach, Waverly’s Derek Dewitt. Fans could see there was a disagreement. Dewitt was shaking his head and waving his arms.

After a ref stepped in, play resumed and Jake got the ball. He started to genuflect, as he’d practiced all week. Teammates stopped him and told him to run, but Jake started going in the wrong direction. The back judge rerouted him toward the line of scrimmage.

Suddenly, the Waverly defense parted like peasants for the king and urged him to go on his grinning sprint to the end zone. Imagine having 21 teammates on the field. In the stands mothers cried and fathers roared. Players on both sidelines held their helmets to the sky and whooped.

In the red-cheeked glee afterward, Jake’s mom, Liz, a single parent and a waitress at a coffee shop, ran up to the 295-pound Dewitt to thank him. But she was so emotional, no words would come.

Turns out that before the play Dewitt had called his defense over and said, “They’re going to give the ball to number 45. Do not touch him! Open up a hole and let him score! Understand?”

It’s not the kind of thing you expect to come out of a football coach’s mouth, but then Derek Dewitt is not your typical coach. Originally from the Los Angeles area, he’s the first black coach in the 57-year history of a conference made up of schools along the Ohio-Kentucky border. He’d already heard the n word at two road games this season, once through the windows of a locker room. Yet he was willing to give up his first shutout for a white kid he’d met only two hours earlier.

“I told Derek before the play, ‘This is the young man we talked about on the phone,’” Frantz recalled. “‘He’s just going to get the ball and take a knee.’ But Derek kept saying, ‘No, I want him to score.’ I couldn’t talk him out of it!”

“I met Jake before the game, and I was so impressed,” Dewitt said. “All my players knew him from track. So, when the time came, touching the ball just didn’t seem good enough.” (By the way, Dewitt and his team got their shutout the next week, 7-0 against Cincinnati Mariemont.)

Into every parade a few stink bombs must fall. Mark Madden of the Pittsburgh Post-Gazette grumbled that if the mentally challenged want to participate in sports, “let them do it at the Special Olympics. Leave high school football alone, and for heaven’s sake, don’t put the fix in.” A few overtestosteroned Neanderthals on an Internet site complained, “That isn’t football.”

No, it became bigger than football. Since it happened, people in the two towns just seem to be treating one another better. Kids in the two schools walk around beaming. “I have this bully in one of my [phys-ed] classes,” says Dewitt. “He’s a rough, out-for-himself type kid. The other day I saw him helping a couple of special-needs kids play basketball. I about fell over.”

Jake is no different, though. Still happy as a frog in a bog. Still signs the teachers’ register in the principal’s office every morning, ready to “work.” Still gets sent on errands, forgets where he’s going and ends up in Frantz’s office. Still talks all the time, only now it’s to NBC, ESPN and affiliates from CBS and Fox about his touchdown that won the game.

Yeah, Jake Porter thinks his 49-yard run made for a comeback victory. He thinks he was the hero. He thinks that’s why there were so many grins and streaks down people’s faces.

Smart kid.

   

Busy Thursday

Austin had his EEG and his spinal X-rays this morning.  Prepping a normal child for an EEG was work.  I couldn’t imagine how some of you do it with your mentally challenged children.  Knock on wood, we haven’t had to do one with Matthew or Rachel.  Austin was done with both tests by 10:30 this morning.  He was exhausted.  He wanted to sleep for 24 hours.  He didn’t but I think he was pretty happy they were done and they were painless.  We’ll probably get results at the end of next week.Kevin called me at work at about 11ish.  Before my surgery my boss gave me two free movie tickets and a gift certificate to Fuddrucker’s.  Kevin asked if I felt up to an afternoon date with him.  Shoot yeah!!  Anytime I can get some one on one time with my man, I’m all over it!! 

 After I got off of work, I met him at the mall.  We had a nice peaceful lunch.  Well, sorta peaceful.  The neighbor girl was there, with her mom, helping to raise money for the school drama club.  My hubby also saw a friend from work there.  I can’t take my hubby anywhere without him knowing a poo load of people.  Once we got done eating we still had an hour to before the movie started.  We tried to walk around the mall and window shop but my tummy didn’t want any of that.  So we got to the movie 30 minutes early.  It was nice to have a theater all to ourselves for a while.  Kevin rested his eyes while I chattered.  We are like old people.

We watched Vantage Point.  Kevin said that some people that he knew had hated it because it kept going back in time to show each individuals vantage point of an incident.  But we loved it.  The third or fourth time of it going back in time we kinda got annoyed but the pieces fell together so well that the feeling passed.  It was definitely a great pick for a date movie.

We came home and have just vegged the rest of the evening.  Rachel went to her dad’s for the night.  Lauren invited a friend over.  We always seem to lose one and gain one. 

In other news, I’m getting back into work pretty well.  Earlier in the week I was nervous about going full-time next week.  But now I am feeling a lot more confident about it.  I’m still avoiding the stairs and moving too much.  I have to create this balance where I’m not sitting too long and I’m not walking around too much. 

One huge thing that I have noticed since I had my hysterectomy is that my blood pressure has gone up.  Before the surgery it hovered around 90/60.  The last two appointments it has been around 120/90.  I was a little worried.  I have never had one of those numbers above 100.  NEVER!!  Kevin said it is because those organs are gone now so the blood flow is not going there anymore.  And where my blood pressure is at is where it should have been.  So maybe with it being normal it will have some positive effects on my health.  We will see.     

The First 6 Months with Matt

This is the continuation of the FX Memories series.  I left off two weeks ago with moving into my first apartment with my 16 day old son.  I was a single mom and would remain that way for some time.  I just didn’t know that yet.  I didn’t get to go back to my job at the police department.  The budget just wasn’t there.  I was living on welfare in low-income housing.  And I was very happy.  Go figure!

Everything seemed to go pretty smoothly the first couple of months.  Matty seemed to be progressing okay.  He was underweight but he was gaining weight so there was no worry.  Then one day he just stopped peeing.  He started running a slight fever.  He had already had one urinary tract infection due to his hypospadias.  I assumed that was what was going on.  I took him in to see his pediatrician.  Dr. H admitted him into the hospital that very moment.  He was terribly dehydrated.  All that eating but not getting anything finally caught up to him. 

My baby was put in this horribly ugly rainbow onesie.  He was attached to all these tubes and things and then put in a hospital crib…with no baby bumpers.

My mom knew the struggle I was having with breast feeding.  She had suspected that maybe he was eating so much that he was throwing up.  She was right but we didn’t know it yet.  Matt was on both sides of the coin.  He either couldn’t get the suction reflex going right and he would get milk but it would spill out of his mouth.  Or he would get the suction reflex right and eat and eat and eat until he ate way too much and threw it all up.  My poor baby was starving but no one knew it.

My mom called the hospital to inquire on Matty.  After the nurse gave her the report, she asked her about her suspicions.  The nurse flipped out on my mom.  She told her to never mention that to me.  I had to breastfeed my baby and there was no way that a baby could overeat until it vomited. 

They got Matty hydrated and sent us home late the next day.  I was told not to change a thing on feeding him.  So I didn’t.  He wound up there again about two months later.  Once again he was released the next day with no changes.  No one ever questioned it.

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What Matty could and couldn’t do in those first six months.  Green means good to go and Red means that he couldn’t do it.

Taken from NNCC Infant Development Center   

PHYSICAL DEVELOPMENT

BIRTH TO SIX MONTHS

      At birth, infants cannot control their body movements. Most of their movements are reflexes. Their nervous system is not fully developed.

      For the first few months, infants can see clearly objects that are about 10 inches away from their faces. By 6 months, their vision is more fully developed.

      By 4 months, most babies have some control of their muscles and nervous system. They can sit with support, hold their head up for short periods of time, and can roll from their side to their stomach.

      By 5 months, most babies can roll over.

SOCIAL AND EMOTIONAL DEVELOPMENT

BIRTH TO SIX MONTHS

      They begin to develop trust as their parents and providers meet their needs (for example, feeding them when they are hungry, changing their diapers when needed, or holding them when they cry).

      When frightened, infants cry and look surprised and afraid. They cry to express hunger, anger, and pain. It is their way of communicating.

      They are easily excited or upset.

      They need to be cradled and comforted.

      It seems as if they cannot tell where their bodies end and someone else’s begins.

      Infants smile in response to a pleasant sound or a full stomach. At about 6 weeks, they smile in response to someone else. By 4 months, they smile broadly and laugh when pleased.

      They learn to recognize faces and voices of parents and providers

INTELLECTUAL DEVELOPMENT

BIRTH TO SIX MONTHS

      Infants can focus on and follow moving objects with their eyes.

      They cry in different ways to express hunger, anger, and pain.

      They babble, coo, and gurgle.

      They turn to locate the source of sounds.

      They study their hands and feet.

      They forget about objects that they cannot see.

      They explore things with their mouth. They put anything they can hold into their mouth.

Wordless Wednesday ~ Sleepy Time