Wednesday, October 24, 2012

Bullies are everywhere….

***Warning – The R-word is mentioned throughout this post.  Readers discretion is advised.***

Do any of you know who Ann Coulter is?  Until this week I had never heard of her.  She is a political commentator… among many other things.  She is making big headlines this week because of her Twitter posts that have outraged a lot of people including many parents of children with intellectual disabilities, like me.  She has not once, not twice, but three times used the R-word as an insult towards the President of the United States. 

The first tweet was about a video the president made for the National Forum on Disability issues.  Here is the video:  Here is Ann’s tweet: "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election."  

Then after the presidential debate this week she tweeted: "I highly approve of Romney's decision to be kind and gentle to the retard."

Then she went on: "Obama: "Stage 3 Romneysia" - because cancer references are HILARIOUS. If he's "the smartest guy in the room" it must be one retarded room."

How does this make me feel?





And believe it or not, Thankful! This evil woman brought attention to a huge issue that plagues our vocabulary, without even realizing the impact. The R-word is a derogatory word.  Sure, perhaps her followers may have thought her comments were funny and/or think that it is OK to use the R-word, but not without hearing from the people that the R-word hurts…prompting more people to take a stand against using the R-word.  The media is blowing up over this, which only continues to raise awareness to end use of the word.  These articles will get posted millions of times on Facebook, Twitter, MySpace, and emailed all around.  Because of that, I am thankful.  Check out this amazing letter to Ann from John Franklin Stevens who is a Special Olympics athlete and global messenger:

A few weeks ago I had an email conversation with someone over their use of the R-word that was sent out in an extremely large email chain.  The person was upset that I didn't  come to them directly instead of replying to all, but someone followed up her email backing her use of the word so I felt I needed to reach out to everyone on the email chain.  The conversation between us hasn't been long forgotten by any means, but this media coverage was like pouring Jack right into the wound.   When the incident happened, I talked myself out of blogging about it.  At the time I thought I made my point and that was good enough, but it still plagued me because I was keeping this from those who follow my blogs.  I am the quiet one, who doesn't like confrontation.  I have been sitting on this for weeks, debating with myself whether or not to share this experience because several of the people who were in the email chain are Facebook friends and that is the source I share my blog from.  After reading all of these articles on Ann Coulter I decided I need to get it out there instead of it hanging over my head.

This was my reply to all email after someone used the R-word: “I find the R-word very offensive and would love it if my familia would discontinue the use of it.  My son, Jackson, has a mental impairment called Fragile X syndrome and when you use the R-word you hurt me and my family very much.  You wouldn't call my son a RETARD to his face, but when you use the word you not only hurt my family, but others who have a mental impairment.  There are so many other words you can use... so I challenge all of you to take the pledge today to end your use of the R-Word.  It only takes a few seconds...

I received a lot of responses from other people on that chain supporting me and apologizing.  It provided me some comfort which I needed because of how the way the rest of the day went.  The emails I received directly from the person who used the word never apologized; at least I didn't feel that she did.  Her responses to me were in all caps and were full of nothing but excuses for why she used the word.  She called my sons disability an “ORDEAL” and claimed that it wasn't a personal attack against my son.  She went on to explain to me that she has worked in the field for 23 years and knows and understands these impairments.  That we all have impairments in one way or another and after being in the field for so long, she chooses to laugh rather than cry about the inadequacies of her friends.   That is her business and if I have a problem with that she said to feel free to come at her on a personal level seeing that I took it personal. 

So I responded this to just her:
Fragile X syndrome is a genetic syndrome that is the most common cause of autism and, for lack of a better term, the inherited cause of mental retardation/impairment. Yeah my son has special needs, but I don't see it as an ordeal.  I took it personal and because I live with it every day and I will continue to take it personal until my last breath. Once you used the R-word, then others quickly followed which made it look OK to use.  I am glad that you are able to laugh rather than cry about, but I choose not to.  Just because you work in the field doesn't give you the right to use it and when you do it tells others it is OK.

The R-word is a derogatory word and it hurts me to hear it, sure that is on me.  You and I have talked about this before, however I was really intoxicated so I don't know if I made my point on how it makes me feel, but I know you saw me cry about it.  When I hear or see people use the word I try to seize the opportunity to teach and advocate about the use of the word and how it affects me.  If you continue to use the R-word in everyday language, that's on you.  And you know it hurts those around you, especially this kid who loves and looks up to you.  In the beginning after getting my son's diagnosis it was hard for me to remove the R-word from my vocabulary, I am not a perfect person by any means.  I saw an opportunity to speak up about how the word affects me as a parent of a son who has a mental impairment.  I know I may not be able to remove the word from everyone's daily life, but if I can reach one person then it is worth every breath.”

The response I got in return was again in all caps, but again it didn't feel like any sort of apology.  She again says it was not directed towards me and feels that there are other words that should be removed, even listed them.  She said she respects my opinions and feelings, and I can choose to respect her or dislike them as I wish.  She again states it was not directed towards me or my family, but if I like I can choose to use her comment as a grand stage for my cause because she doesn't mind because she knows who she is and what she stands for such as myself.  And she loves the people she works for.  

The thing what makes it worse is that she works with people who have intellectual disabilities for a living.  Years ago I remember hearing her standing up and putting people in their place for using the R-word.  What happened to that?  I felt defeated after our emails back and forth, but not to the point I would start using the R-word in everyday language.  Perhaps she feels defeated after all the years of standing up for those who she works for, but it gives her no right to use the word.  I have run into this individual once since this email conversation and neither one of us spoke to one or other.  She might read this blog and be irate that I wrote this.  However she did tell me that if I wanted to use her comment as my grand stage then she doesn't mind.  I read another blog that encouraged me to write this up:

I will continue to ask people to stop using the R-word when I hear or see it and challenge the user to take the pledge to spread the word to end the word

Thursday, October 11, 2012

The Controversial Topic of Bullying

A person very close to me witnessed an event in a school cafeteria.  I am not going to mention the school this happened in or the persons involved to keep them protected. The event really upset the adult that witnessed, it upset me as well.  The event also prompted me to research what schools Missouri schools define as bullying.

The majority of the schools defined bullying in the following matter: Bullying includes a wide variety of behaviors, but all involve a person or a group repeatedly trying to harm someone who is weaker or more vulnerable. It can be physical, verbal, sexual, or psychological. It can involve direct attacks (hitting, threatening or intimidating, malicious teasing or taunting, name-calling, making sexual remarks, stealing or damaging property) or more subtle, indirect attacks (spreading rumors or encouraging others to reject or exclude someone).

Teasing is defined as to make fun of, irritate, or attempt to provoke (a person or animal) in a playful way with persistent petty distractions, trifling raillery, or other annoyance, often in sport.

Most of my research on the school districts also stated that teasing becomes bullying when it is repetitive or when there is a conscious intent to hurt another child. It can be verbal bullying (making threats, name-calling), psychological bullying (excluding children, spreading rumors), or physical bullying (hitting, pushing, taking a child's possessions). 

The scene setting is a middle school cafeteria.  A really anxious child went to sit at their lunch table, but all the seats were taken and it was really loud, so the child went to a different table.  The different table happened to have children who were a year older.  The anxious child sat at the table and started covering their ears while munching on Cheerios for comfort. 

The older children started making fun saying, “Put your hands down! Quit covering your ears! Why do you eat Cheerios all the time?  Why do you talk like that?” all the while laughing as they continued to make fun. 
An adult noticed this interaction and went over asking the children to stop.

The child who was being made fun off told the older children, “I am zipping my lips and not talking to you”. 

The older children shouted back, “Well then how are you going to eat your Cheerios” as they giggled and continued to make fun of him.  The children obviously didn't listen to the adult.  The child who was being made fun continued as though nothing was going on, eating his Cheerios and holding his hands over his ears.

The adult asked them to stop again and then reported this to the school principle and their boss.  The boss said, “You can’t change the world and these kids aren't bullying that child yet”. 

The adult started crying, taken off guard to this response; it was personal to this adult because they have a relative who has special needs similar to the child who was being made fun of.  It appears to this boss that bullying is only when physical abuse is occurring.  The adult and I chatted back and forth over this for a while.   The adult was distraught and felt the child who was being made fun of didn't even realize that was going on which made their heart sink further. 

I thanked the adult on behalf of other special needs parents for speaking up, reporting the incident, and for being a hero, at least in my eyes.  The adult is most likely right in feeling that child didn't understand what was going on around them.  The adult was so upset worried that the parents of this child will never know what happened.  My son is non-verbal; he can’t tell me what happens at school.  Even though he is only 3 and in pre-school I ask him every day, “How was school today, buddy? Did you learn and play with your friends? Did you see Aidan today?”  He always smiles at me and answers, “Yah” with a giggle.  Aidan is his classmate and is one of his friends…so I know he will respond to that.  My hope is when he is older he will understand what I am asking him and will be able to answer. 

I feel there is a huge misconception on what bullying is, in the incident above the boss told the witness that it wasn't bullying because there wasn't anything physical.  Maybe I am wrong and don't understand what bullying is, but I strongly feel this child was bullied, but others might argue that the child was just teased. Personally I think this staff at this school should go through a bullying training to better understand that bullying is not just physical.  I would even attend a bully training to better understand it myself.  I also read in my research that it depends how the child (victim) reports the incident, but what if the child doesn't know how to report the incident or they aren’t capable of reporting the incident? Other kids who witness bullying events can report them and that is awesome, but what if they don’t understand what bullying is either?  I saw a lot of great articles were schools as early as elementary age participate in bully training, but it shouldn't just fall on the schools to teach the children, parents need to step up to.  I know, I am preaching to the choir here..   I know so many parents who read this will either be extremely upset like I was and some that just think kids can be so cruel and just blow it off as it were nothing.  What do you think…was this child being teased or being bullied?

Growing up I was verbally and physically bullied.  During elementary age while walking to the bus stop a neighbor a few doors down would push and shove me, threaten to kill me if I told my mom, and on one occasion slapped me across the face.   My mom saw that happen and had a very long talk with her.  After that the abuse stopped and that girl never spoke to me again.  During middle school age I was teased for being a tom boy and not wearing makeup.  A group of girls would ask me if I knew what a dyke was and the follow up with the question asking me if I was one.  This happened for days until another student stood up and told the girls to stop, from that day forward those girls never asked me again.  The verbal abuse did not bother or scar me, maybe because of the experience I had at a younger age, or the way my mom thought me that sometimes it better to turn the other cheek and stick and stones.  I always felt you can make fun of me all you want, but you can’t make fun of my friends or my family.  The only fist fight I had growing up was with a boy who made fun of my brother and my childhood best friend.  The fight was quick, the boy hit me in the face and I fell to the ground.  When I stood back up, the boy took off running.  My friends said it was because I had a look of rage like I was going to rip his head off and I was screaming like a demon, perhaps I levitated off the ground because the group of boys looked really scared.  All I remember is being so mad that tears were streaming down my face.  That boy never teased my brother or friend again, so that was all that mattered to me.

To all those people who stand up to bullies, thank you so much for being so courageous…  please don’t stop standing up for others because it makes a difference.    

Tuesday, October 9, 2012

Wake me up when September ends…

Seven years has gone so fast.  Wake me up, when September ends. Here comes the rain again, falling from the stars; drenched in my pain again, becoming who we are. As my memory rests, but never forgets what I lost… wake me up, when September ends….

I can’t believe 7 years ago this past Saturday you lost your ever so courageous battle with cancer. So much has happened over time, but there isn’t a day that goes by that I don’t think of you.  Memories of us growing up together still fill my heart with joy and laughter.  I know you are looking down or maybe up (LOL!) and watching over us.  I can hear your footsteps in the morning, well I used too…we moved dude, come on over already.  I wish you could meet my son; I know you would be proud so of him. He is such a happy busy boy. He works so hard every day to just exist in this world and he reminds me of you sometimes especially when things that come easy for some people that are not so easy for him.  He strives for our acceptance and praise when he accomplishes anything.  He laughs at the same things we did as kids, poop and farts.  Teehheee…  You were right when you told me about your children, he is truly the best thing I have ever done with my life. I love and miss you so much my little big brother.

P.S.  Cancer still sucks…

Wednesday, October 3, 2012

The big move part 2

The move itself went really smoothly; it was days leading up to the move that was rough.  Jackson needs full attention, you can’t just plop him in front of TV or his favorite toys, the iPad may give you 5 minutes.  You can’t expect you are going to get anything accomplished when he is in the vicinity.  I tried once and he dumped the box I filled in 2.5 seconds flat. As I tried to clean up the dumped items, he was clearing the table of the packing tape and sharpie.  Oohhh a sharpie…sweet find for him as he was taking the lid off to draw on the wall I patched and painted a few months ago… Luckily I was able to grab him before that happened or before he had sharpie mustache or tattoo arm sleeve.   We did have help watching him leading up to the day the movers showed up.  Weekends and weeknights people would come over and watch him which was very helpful.  I know we couldn't have packed at all if we wouldn't have had that help.

The night before the movers came, I left the new home after painting to help Sara with the last of what we could get packed in a box, you know those hodge podge boxes of stuff that are not organized..  It was one of those kinds of packing nights.  I remember getting home, taking a shower, and then laying on the hardwood floor feeling like death warmed over.   Sara and Jackson were on their way after having dinner over at her parents, Andie was on her way to watch him, and I could not move from the floor.  Every fiber of my being was sore.  I have had tough workouts throughout my career in sports and nothing even compared to how my body felt at that moment.  Even though it was a brief moment of rest, I was able to muster up energy to help pack more boxes. 

I don’t remember going to bed that night, or how was I able to get up the next morning.  I left early to meet the Charter guy at the new house.  Even then I couldn't just sit and wait because I wanted to make sure what we had already brought over was out of the way of movers. Charter came and had trouble getting tone on the line, so they had to run a new cable outside to the house.  I brought a laptop and a mac as I know you need to test the connection once it is live.  The Charter guy also had some tests he had to perform, but I made him connect via a cable into my modem/router vs. giving him my router configurations.  The internet was up, but there was one test of his that kept killing the connection.  The Charter guy told me that most likely it was modem and tried basically sell me a Charter modem.  I explained to him that it was not the modem, but the test itself, most likely this happens on all personal routers, he said yes…for some reason they have trouble with this test.  I believe this a ploy they use to get customers to buy their crap.  I explained that it is cheaper for me to buy and configure my own equipment than it is to rent Charter’s, there was no argument there.  I also explained that I have had this modem at two previous homes that both worked fine with Charter services, there was no argument there.  He told me that I would need to most likely upgrade my modem to handle the high speeds that Charter has to offer. I explained, in my house we don’t need anything higher than what we have, but thanks anyway.  Each time his test failed, you had to reboot the modem to regain connection, although I bet if we waited a little awhile that would have worked too.  I told him it wasn't necessary to continue to push this test as it is apparent it doesn't work.  I told the guy I did IT for a living, but he didn't know what that was.  So I explained that I have been supporting computers and servers for over 15 years, but he gave me a look of not impressed.  Either way, the internet was up and working which will make everyone in our house happy.  Did I mention this guy looked like George W. Busch Jr.?  Seriously, could have been his brother…

Sara called shortly after the Charter guy left, the movers were almost done and they were getting ready to swing by the storage locker to get the rest of our belongings.  It was only 11:00 AM, so they booked it.  I figured they would stop for lunch on the way, at least that is what the last movers we had did, but they came straight over.  There were 3 of them, so that helped a lot.  Sara stood in the hallway of the entry way guiding them with each load.  They had trouble getting the box springs up the stairway to the 2nd level, so they passed it through the Veranda.  They ended up passing the bed frame through there as well.  With all the stuff they moved there was only had one causality, one bottle of my pumpkin ale homebrew.  I am not even sure if was a causality though because the less than half case is over 2 years old.  I figured this brew might get better with age, but after drinking one the other night…I am not so sure.  The movers were done by 2:00 PM. 

Jackson was over at Sara’s parents and they were going to bring him over after the movers were done.  Cray was going to come over after work to watch him for a little while we unpacked some boxes.   In-between the exchange I put together our canopy by request from Sara.  I was just about finished when everyone showed up.  Then I worked moving some furniture in the living room and safely securing the TV to the wall.  Sara worked on unpacking the kitchen.  We had some boxes that ended up in wrong places, but overall it was well worth having the movers do it. Sara’s parents said we could bring Jackson over later that night and he could stay with them giving us a few more hours at night to get more stuff completed.  We dropped Jackson off and picked up the dogs from the old house.   We set up Jackson’s big boy bed to which I am happy to report that he has successfully slept several nights in since the move.   We bought a video monitor to make it easier on us in fear of him having a seizure in his sleep.  We unpacked more boxes until late at night before calling it a day. 

The dogs were nervous all night and it has been hard getting used to not being able to let the dogs out the back since there is no fence.   Jackson loves walking the dogs.  He doesn't hold a leash, but he will hold your hand.   He will laugh at them when they get tangled up and then holler at them when they go the wrong way.  It is so cute, but very hard to clean up doggies messes when you have the two of them and Jackson in tote.   So far all the neighbors have been very welcoming.  The neighbors behind us moved in the same day.  Sara has met most of the neighbors when walking with Jackson.  Box by box are getting there.  Sunday evening we had my nephew’s birthday.  Afterwards Sara wasn't feeling very well and then ended up with the stomach flu causing her to miss a day at work.  Both our dad came over on Monday to help with some minor repairs, like hooking up the drain line to the dishwasher, fixing the drain pipe for the clothing wash machine, and the outlet to the microwave was loose.  We did not get to unpack very many boxes throughout the work week. 

Friday I left town, Danville, IL., for work and Jackson started a new patch with a higher dose of Clonidine to help him with the aggressive impulsive behaviors.  Since work went well Friday night, I drove back home on Saturday to help get things done.  As for Jackson’s medicine, the new patch caused Jackson to sleep for 3 solid days.  The last time Jackson had sleep patterns on a medicine like this, he had a seizure so he slept in bed with Sara while I was gone.  Sunday we went to the old house to grab window coverings and the storage space to remove the rest of the items and turn in the keys.  Jackson was like a zombie the entire time.  I felt very winded and tired, figured it was from the driving.  We ate some lunch and I took Jackson up for a nap.  Sara’s dad was going to come over to help hang window rods later that afternoon.  I abruptly woke up in the middle of the nap with the stomach virus Sara had the weekend before.  Terrible timing as I was supposed to leave and head back to Danville.  Luckily one of my work teammates was able to cover for me and my management was empathetic to my needs.  I got some rest and had to return the rental car Monday afternoon.  The drive into the city did not go very well as I was not completely better.  When I got back home I rested some more.  I still don’t feel 100%, but I am eating again.  We removed Jackson’s patch Sunday afternoon because we were in fear of a seizure and school in the morning.  Jackson is back to his bubbly higher self now.  If only we can find a middle ground with this medicine.  Dr. EBK suggested we try a patch and a half that has worked with other kids who were on the smaller dose and had the same sleepy reaction to the larger dose.  She just said she can’t guarantee the amount of medicine distributed in the half patch, but we can give it I try.

Last night we ran up to Lowes and bought some hardware to hang up Jackson’s IKEA hug swing.  On our way home there was a beautiful full Rainbow that looked like it was located directly over our house to welcome us home.  By the time we got home it had faded a lot, but you could see it perfectly from our driveway.  I was able to get Jackson’s swing hung up and even watched Parenthood which was an awesome episode.   “Vote for Max the (braver) MAN”.  This is show is so awesome how it deals with day to day struggles.  I could easily write a review/blog on every episode.  It is a must see TV show in my opinion.  Jackson was asleep before I could have him test his new swing.  We put Jackson back in his big boy bed, but had a very rough night staying sleep between 1 – 4 AM.   Now I am back to feeling like a zombie… LOL!  Oh and did I mention the big orange cable that Charter ran over a week ago is still not buried?  

Thursday, September 27, 2012

The big move

It is official…we have bought a new house and moved into it.  For a minute I wasn't sure that was possible after putting an offer on a house that ended up being the money pit as mentioned in my previous blogs.  The house we bought is a million times better than the one we walked away from.  I still can’t believe it is all ours because it is way more than ever imagined it could be.  We signed the papers almost two weeks ago.  Since then we have done so much and we are so exhausted.  The first week we painted, painted some more, had some carpet replaced, cleaned, and painted some more.  The second week we hired movers and the majority of our belongings are all under one roof.  We still have a few items at the old house and it needs a good cleaning, but we are officially moved and living in the new house.

The hardest part of this process was finding people to watch over Jackson while we got things done.  We started packing as soon as the inspection went well.  Each of us taking turns in various rooms, while the other attended to Jackson’s needs.  Then we had help from family and friends who would come over and watch him for a few hours here and there.  We are super lucky to have the help we so desperately needed.  I don’t know that we will ever be able to thank those who gave us that time, especially since we are trying new medicine for Jackson that doesn’t appear to be phasing him much when it comes to hyper activity, a calm body, and nice hands.  Jackson started on a Clonidine patch a few weeks ago since the extended release turned him into a zombie and the split pills didn’t seem to be enough.  As with any new medicine, you start off with the lowest dose and work your way up.  We just received the new dosage yesterday, so I hope it will be the perfect fit for Jackson to be able function or exist in the world without so much anxiety and whatever else may cause some of the impulsivity.  

So the rest of this blog I will break down into two parts. Part 1 will be the preparation for the move.  Part 2 will be the move itself.

Part 1: The day before the close we did our final walk though going over all the items the seller had to repair/replace for the occupancy permit.  I gotta say the Ballwin area has some strict guidelines and the seller had to do so many things.  The only area of concern for us about the house was the driveway.  It is concrete sections and some of them had sank lower than other sections, but it was nothing major.  Interestingly enough Ballwin saw that as trip hazards, so the seller had to fix the driveway.  The rest of the stuff was really minor; like a smoke detector didn’t work…it just needed a new battery. 

On closing day we packed up the car with some cleaning supplies and paint.  After signing all the papers we went over and started with painting.  We wanted to paint the living room, dining room, the master bedroom and bath, the hall bath, Jackson’s room, a spare room yet to be determined, and the basement.  The basement was the biggest area and must as it was completed in wood paneling, over 1500 sqft of wood paneling…  After Googling how to paint wood paneling we had a good plan.  So we started down there.  Taping and placing plastic down took over an hour, but we were still very excited to get this done.  Jackson was over at Sara’s mom’s house receiving his in home ABA and Sara was going leave later in the afternoon to pick him up and I was going to stay as long as I could.  We started in one corner with the prime, filing the cracks, and then painting the wall.  Filling the cracks was a very long process, but it needed to be done.  At some point I took a break from painting to pull out the old dishwasher.  Sara had to leave to go get Jackson.   Once I had the dishwasher out I went back down and decided to roll on the primer over the areas we had filled.  I came to a stopping point and headed home. 

The next morning I could barely move.   One of us needed to be at the new house for the appliance delivery, so I headed over before 8:00 AM.  Jackson was scheduled to go over the grandmas again and in the afternoon Sara was going to pick him giving her a few hours in the new house for more painting and cleaning.  We also had my High School 20 year reunion later that night and Jackson was going to go back over to Sara’s mom to stay the night.  Filling in the cracks of wood paneling sucks and I noticed that we were going to have to roll two coats of primer because where we had filled the cracks then painted over you could see the stripes.  I was worried they would show through the paint color we actually wanted.  Sara cleaned, while I painted.  Then Sara’s mom said she would just keep Jackson allowing Sara to stay with me.  Sara came down and started painting with me.  We had set a goal to get all the way around with filling the cracks.   Andie and I had been texting off and on, she was going to be in the neighborhood and stopped by.  We were almost all the way around the entire perimeter of the basement, but had to stop to go get ready for the reunion.   The reunion was awesome, but that story will have to be told another day.

Sunday morning was a rough start mostly because I was completely hung over.  Someone scheduled a showing at our house for the afternoon so we had no time to be lazy and the house was disarray with packed boxes.  We also were getting laminate dropped off at our new house around the same time as the showing and my pops was going to come over and install the new dishwasher.  So I headed back over to the new house.  The dishwasher needed parts so as soon as the flooring was dropped off, we headed to Lowes.  Sara had Jackson and they were killing time for the old house showing.  We all ended up back at the new house.  Jackson was running around crazily at the new house and they left.  After getting the dishwasher connected, we pushed it under the counter, but it was getting stuck on something.  There was a copper pipe that ran behind the dishwasher to the refrigerator, but the pipe was not in the wall.  The back of the new dishwasher was right against it then all the sudden it started leaking where the pipe was fused together.  Luckily the shutoff was under the sink, but then the pipe just fell off.  My dad asked me if I had a torch.  I might be futch (not too fem, not too butch, just somewhere in-between), but I don’t own a lot of tools.  I have just enough to get by for small repairs.  My dad however has two of everything; it is just a matter of him being able to find it.   Since we weren’t washing dishes anytime soon, we stopped and rescheduled so dad could bring over his torch and other plumbing fixers (I have no idea what the actual terms are).  I called Sara with the news and all I could hear was Jackson being crazy in the background.  I could tell Sara needed a Jackson break so headed home grabbing some dinner.  After dinner Sara headed over to the house to finish filling the cracks. 

I had Monday off to get more painting accomplished.  We had so much to do and movers were coming on Saturday.  Sara had bought a really cool gray, so I tested a patch on his room and the bathroom.  Then down to the basement I went.  I was able to roll the rest of the basement before lunch.  Then after lunch I started the second coat.  Sara stopped by after work and I showed her the patch tests in the bathroom and bedroom, we both agreed it was too dark for the bathroom.  Sara couldn’t stay long and left shortly after seeing some of the progress.  Andie was going to call and come over later to help with painting and I had finished the 2nd coat of primer on the basement before she came over.  I was exhausted, but welcomed the help.  We taped off Jackson’s room and painted away.   Jackson’s bedroom is the second largest at 17’ X 12’, so it took a while, but it was awesome because it gave Andie and I some time to chat, something we haven’t been able to do in a long while.  After getting the room finished, we went to grab a bite to eat and the dining room at Lions Choice was closed, it was also down pouring.   It was around that time I realized I had been painting for 12 hours.  I also had Sara’s dad’s truck which I needed to swap back so Sara could drive Jackson to school the next day.  I was early afternoon at work the next day where my body was trying to shut down and I felt awful.   Originally I was going to go to the new house after work to do more painting, but I decided to go home.  Jackson was getting therapy that evening, so Sara worked on packing while I just lay in bed.  

I scheduled Thursday and Friday off because we weren’t sure when the carpet was going to be installed.  I figured if I had to take a day back, I would do that.  Wednesday afternoon I went to Lowes on lunch to get more painting supplies and pick a lighter color gray for the bathroom.  We got a call from the flooring people and they were going to come over Thursday afternoon to tear out the old stuff and do the install on Friday. How perfect is that?!?  After work I headed over the new house, I tested a patch over the dark gray test patch and dark purple in the bathroom, and then went downstairs to start the color.  I decided instead of filling the cracks, I would just roll it.  The roller was getting in the cracks fairly well, but the color was not coming out very well.  I painted to a spot, stopped, and headed to the old home.   I packed the car up with some stuff we didn’t want the movers to take (breakables).  

The next morning back over to paint.  I was worried that Sara wasn’t going to like the color and I was tired of being in basement.  When checking the tested patch in the bathroom I realized it was going to need to be primed.  Taping a bathroom is not an easy job I found, but I was able to get the bathroom primed.  The bathroom was a tighter space and I got a nice little buzz.  Ran out and grabbed lunch and shortly after finishing it the flooring guys showed up and got started.  I went downstairs and started painting again.  Sara had a FX mouse races meeting, so I couldn’t stay too late, when the flooring guys finished, I headed home.  I had a huge headache from the Killz and the paint.  Sara decided after the meeting she would go over and start where I left off.  Just as I thought….she hated the color. So much that she was ready to do something else.  I was so tired and exhausted I was like, too bad we are going with it.  Oh…and it will also need a 2nd coat anyway.  Friday morning I headed over early, the flooring guys came, and I continued on with the basement color.  The flooring guys got done before I did, but I was able to get all away around the basement.  I also painted a section with a second coat so we could see the outcome.  I then painted Jackson's bathroom. 

We did all we could before the movers showed up on Saturday.  I left early to meet the Charter guy in the morning while Sara took care of guiding the movers. I mean we can't move if we don't have Wi-Fi, Jackson won't be able to watch his YouTube and Sara wouldn't be able Pin things and FaceBook.  LOL!

Part 2 to be continued….

In the meantime enjoy some before and after pictures...  

Our New Home, a set on Flickr.
Some before and after pictures of our progress.

Wednesday, September 26, 2012

A few days away

(Note: I typed this up two weeks ago, so I am late in getting it posted.  My next blog post you will understand why.)

So when I last wrote I was mad at myself for not taking time to write and give myself the relief I need.  My blog is not only funny stories of my families’ day-to-day life, or informational for those who want to learn about Fragile X syndrome, but it is a huge stress release for me.  It is a lot like a journal where I can be myself and not care if anyone is judging me.  Hell…does anyone even read this?   LOL!

Any hew… when I last wrote I mentioned we were back on the path of finding a new house to call home.  I am so glad we walked away from the money pit house because not only did we save ourselves from falling into major debt perhaps keeping the money pit from sinking, but it gave us the opportunity to find something even better.   You know…a house that didn’t need major updates in every room, a house that has hardwood floors, a house with a yard that doesn’t slope, a house that doesn’t have rodents living in the attic, a house that really doesn’t need much done but maybe a few coats of paint.   We could see it in our minds…even amidst thinking we had already stumbled across it and finding so many disappointing problems. And then there she was...a bigger, gorgeous, two story home.  Not only did we fall in love with it, but we put an offer on it, got a contract, and close on it at the end of the week.  There are some rooms that need to be painted, we needed a few appliances, some carpet needs to be replaced, oh…and it needs a fence, but it is our dream house.  It has everything we wanted and more.  Sara gets her main floor laundry and walk in closet (which is almost as big as current bedroom).  Jackson gets a new bedroom and even his own therapy/play area.  I get a huge deck and a man cave.  It is perfect and I can hardly wait for Friday to get here.  The last few weeks have been busy with packing, selecting paint colors, and flooring.  The next few weeks will be more packing, cleaning the new house, and painting walls.  The basement is finished in wall to wall 1975 grayish wood paneling.  I promise to post before and after pictures of it all.

New house aside… Jackson has been on two different medicines since the conference.  The divided dose of Clonidine didn’t seem to be working well, when it wore off Jackson was bouncing off the walls.  EBK suggested trying Tenex again, which I was really leery because the last time it did not go too well.  Similar result on take 2, Jackson was not himself at all and the head banging got really bad.  School was seeing an increase in hair pulling and we were seeing that at home too.  Jackson also smashed one of those long dorm wall mirrors with his head at school.  Luckily it did not cut him or hurt any of the other kids; none of the pieces of mirror fell to the ground they stayed attached to the cardboard backing.  So for the last two weeks he has been on a Clonidine patch.  I don’t know if it is too early to tell, but Jackson is definitely himself.  Laughing at farts and wanting to eat all the time.  The head banging isn’t completely gone, but not a frequent problem and is used in an “I am not getting my way” function.  The hair pulling… again something that Is not completely gone, but is being used when trying to get out of something.  

Medicine aside, Jackson is doing really well in speech.  Every day he is making more sounds.  Like most typical 1 and half year olds he reverts to pointing and grunting, when in doubt reverts to finger gagging, but he is working really hard with using his words.  Jackson’s speech therapist is trying hard to help us get a grant proloqo2go for our iPad.  We are hoping to get a grant for it because it is really expensive.  If Jackson points and grunts, you can ask him to use his words and he tries really hard to say it and sign at the same time.  I call that major progress.

Since I brought up the iPad…Jackson’s favorite thing to do on the iPad is watching YouTube videos of people mowing their yards or vacuuming their houses.  I have actually learned a lot about cutting the grass and what our next vacuum purchase should be.   It is also very scary that people let their 2 and 3 years olds cut grass with a lawn mower.  WTF people?  Then there are the three videos of songs Sara and I are getting to know by heart which are “We are young” by fun. (the actual video by the group), “Big Green Tractor” by Jason Aldean (a video of a little boy driving around a JohnDeer), and my personal favorite “Call me maybe” by Carly Rae Jespen (a video dubbed by Missy Franklin and the USA Olympic swim team).  I always had said if my kid loves the big purple dinosaur I will shoot myself, so I will settle for these pop songs for now.  LOL!

Monday, August 6, 2012

Hello blog, remember me…

I want to write on my blog as much as possible, believe me I do.  I wish I could find the time, but it is so difficult. I don’t know how the blogs I follow do it, some of which have more than one child with Fragile X.  These moms are truly amazing and I feel like I truly know them and their families, even though we have never met. I want to thank all the friends and family who follow and read my blog; I didn't realize how many people enjoy our family stories.

So much as happened since I last wrote I don’t even know where to start.  We had the 6th annual Fragile, Not Broken Walk for Knowledge in June.  Even though the walk fell on the same weekend as the Komen Race for a Cure, there was still a big turnout.  So many of our friends and family came out with us and walked in support of Jackson.  I feel like I can’t thank those who participated and donated enough, it means so much to me.  I feel bad that I haven’t had a chance to individually thank everyone.  Jackson was all smiles all day, helps that his nephews were there.  I hope that our team grows every year.
Team Jackson 2012
Sara and I have been trying to find a house since April in the Parkway West district.  We found a house that we loved spite the fact it needed a lot of updates and got an accepted contract, but after the inspection revealed a multitude of problems we had to walk away.  Honestly I am not sure which was the last straw as the list grew, maybe it was the massive leaking basement wall after a slight rainfall or the mice family in the attic, but our inspector found 42 items that needed to be repaired.  Some of those items included more than one item, like the leaking faucets in all 3 bathrooms.  The good news is we didn’t buy the money pit; the bad news is we really wanted the house.  Two weeks…  We had called Parkway West when had our initial accepted contract to get the balling rolling before we even moved.  I think the icing on the cake of heartbreak for the horrible inspection was the call we got from Parkway West about adding services to Jackson’s current IEP.   They were really shocked at the limited services he was receiving at Northwest, they were specifically floored that Jackson was not receiving any speech at all.  Sara told them we were paying privately, to which Parkway responded that we shouldn’t have to pay privately, the school should be providing that.  Even though the house fell through it only reassured us that making the move is in Jackson’s best interest.  So the day we walked away from the contract on the money pit house, we started looking again.  It is so exhausting going from work to looking at multiple houses in one night.  We are fortunate to be able to drop Jackson off at Sara’s moms on the way and pick him up after.  Now if we can just find a house we both like again…we will be set. 

Catching a wave
Having fun in the ocean
House hunting set aside we traveled as a family to Miami for the International Fragile X Conference.  It was our first conference since Jackson’s diagnosis.  We also tried to get a little bit of family vacation while we were there by visiting a beach.  The hardest part of the trip for all of us was the plane ride there and back.  Jackson doesn’t sit still for a long period of time ever, so to have to sit still for 3 hour flights just forget about it.  We tried medicine on the way there, then upping the dosage on the way back.  We had his favorite snacks and activities, but nothing seemed to calm him.  We had a lot of hair pulling, a lot of kicking the seat in front, and a lot slamming into the back of his seat.  Aside from that, the trip was great.   I was warned about Miami’s humid weather, but coming from St. Louis with 104 temps at 90% humidity I didn’t even notice.  We stayed at the hotel where the conference was held, it was walking distance from a mall with a ton of eateries.  We got some great pictures at the Hard Rock Cafe, ate at Bubba Gump Shrimp, and the hotel food itself was amazing.  Jackson was a flirt everywhere we went and his favorite spot was the hotel pool.
Ham'n it for the camera

The conference itself was amazing. They offered childcare which was great because there were so many sessions to attend.  Sara and I divided and conquered, trying to go to as many sessions as we could.  It is overwhelming the amount of information they pack into these sessions.  I went to a clinical session where I was so lost from start to finish.  Sara and I both attended Hand-On Hyperarousal Workshop that was led by Mouse and Tracy.  It was by far my favorite session because we got to experience how it feels to be hyperaroused and we can teach others what it feels like by making them participate in this small little exercise.  I thought I knew how hard it is for my little man to function in this world, but I was completely blown away and to be honest had no real clue.  The common word used in the majority of the sessions I attended was “Hyperarousal”.  Even though the information at times felt overwhelming, it was also good to be reassured that we are on the right path in helping Jackson succeed.  Since Jackson is still young we did miss the big luncheon and dinner banquet which would have given us more opportunity to talk to other families, but I am glad we chose to have some family time too.  Sara did get to go to the Mission to Lars viewing while I put Jackson to bed, I was a little bummed that I didn’t get to see that.  We were able to meet up with Sara’s grandpa and grandma for lunch.  The visit seemed too short, but they were able to see Jackson.  Sara’s grandma brought Jackson a little goodie bag with yummy treats, cute sunglasses, and bubbles.  Jackson literally bounced the entire time they visited.  I can’t remember if Jackson was walking yet the last time they were able to see him. 

Since we have been home from Miami we have been busy house hunting.  Saturday we had a showing of our house and went to the Fragile X BBQ at the Howards.  They are so nice to open their home to everyone and the food spread is always amazing.  Even though Jackson takes up the bulk of our time at events, we find time to take turns and mingle with the other parents.  It is nice to be around friends who are or have been in shoes similar to ours.  Plus there is a pool and Jackson loves pool time.  Jackson pulled on one of the little girls’ hair in the pool and she handled it so well.  I also have a BBF every time I see her.  She loves to ask many questions and has such a great imagination, I really enjoy our talks.  She even lost a tooth which was super exciting; I hope the tooth fairy visited her.   We wish could have stayed longer and visited more, but we didn’t want to push Jackson too far.  I think he may have had too much pool water because on the way home he made himself sick.  Jackson was getting so much better at not sticking his fingers down this throat, but this time we couldn’t distract him away from it at all.  Sara believes he had an upset stomach.  When we got home I pulled the hose around to clean him and his car seat off, he of course loved it.  Then I took him upstairs for a bath while Sara finished cleaning the car seat.  After his bath, we switched and I finished cleaning out the car.  Did I mention that after he got sick he starting clapping and smearing his stomach contents on the window?  I think most parents would be screaming at the top of their lungs over this, but all I could do is laugh at this point.  I will admit I was not laughing when he was making himself sick on the way home, mostly because it makes me want to get sick.   The finger thing has always got to me.  I sure do miss Billy Mays, but Oxi-clean is by far a life saver for times like this.   Next year we will be living much closer to everyone so we will be able to stay longer and the drive home won’t be as far, less time for incidents like this. 

Yesterday we stayed home.  There were a few open houses we thought about seeing, but I didn’t feel like leaving the house for anything.  We took advantage of the no tax weekend and bought a new MAC because ours is on its last leg.   Sara also bought a wireless printer so I got to play tech geek in the afternoon getting it all setup.   We took a much needed family nap and after dinner went for snow cones.  I should feel rested today, but I am not quite there yet.  I think once we are moved into our new home I will be able to get caught up.  Come on new home.. Wherefore art though…  

Monday, July 9, 2012

Seizure scene take 3

So we are in the process of starting Jackson on a new medicine to help with many things. The main focus or areas we are mostly concerned with the aggressive behaviors like pulling hair and head banging which we understand are brought on by Jackson’s anxiety and/or hyper-arousal.  We also want to address the ADHD hyperness that might prevent him from focusing or learning at school.  While we were in Chicago visiting Jackson’s Fragile X doctor we discussed all these things with her along with having her manage his seizures since she gives us a better response all the way from Chicago than the doctors here in the STL.  Jackson and Sara are both on summer break from school, so a perfect time to try this new medicine, Clonidine.   Yes, if you have a crazy memory like I do, we tried Jackson on Clonidine over a year ago to address his sleep issues and we saw an increase in head banging, sleep was a struggle, and he was a zombie throughout the morning.  Jackson can now swallow pills and this Clonidine is an extended release.   The doctor also thought it would be a good candidate because Jackson is now older and bigger, so his system my react differently this time around. 

So far the results haven’t been exactly what we were hoping for.  Jackson takes the medicine in the morning. About 2 hours after he is ready for a nap, sometimes just a quick power nap and sometimes for an hour or so.  After the nap he is a zombie till his normal nap time around 1 and then he sleeps for 2 hours.  After regular nap time he is back to being a zombie again until after dinner to which he returns to his normal bubbly giggly stinker self.   We emailed Dr. Berry-Kravis to see how long we need to try this, she says a week. The good results are he is more calm and focused during speech and OT.

Since Jackson is getting a lot of rest during the day, at night he is waking up around 2 or 3 AM, tossing and turning until finding a comfy spot on me across my neck.  Comfy for him, not really for me, but whatever it takes for him to get sleep I don’t really care.  On day four of tossing and turning, Jackson couldn’t find that comfy spot and started pulling hair.   First it was my hair, then Sara’s. It became clear to us that he was not going to go back to sleep, so Sara took him into the living room for some Mickey Mouse.   After an hour Sara brought him back to bed, but he didn’t want any part of that, back to pulling hair.  So they stayed out in the living room for the remainder of the morning so I could get a little bit of sleep before work.  It was rough getting out of bed let me tell you. I checked in on them before hopping in the shower.  Sara was asleep in the recliner. Jackson was sleeping on the love seat and he looked up at me, smiled, and lay back down.  When I got out of the shower I heard Sara close the recliner and she was running over to Jackson calling name.  She didn’t have her glasses on, so when I came out of the bathroom I saw that he threw up on the love seat, he was having a seizure.  Sara picked him up and moved him to the floor; I grabbed a wash cloth and the emergency medicine.  Normally you wait 5 minutes before giving the emergency medicine, but we have no idea how long he has been having one…so we waited a minute.  Sara gave him the medicine and called 911.  I grabbed some clothes for us, let the doggies out, and by then the first responders was at the door.  Jackson was still having his seizure at that time, so the fire rescuers saw what his seizures look like.  When EMT’s arrived Jackson was coming out of his seizure.  The emergency medicine worked this time. 

These seizures appear to be happening on a two month cycle.  One of the EMT’s remembers being at our house from the last one.  Unfortunately we still have not had a follow up with an STL neurologist (I will come back to this topic), so our only action plan is give him emergency medicine after 5 minutes, then take ambulance to ER.   So we told the lead EMT we want to go to Children’s in unison when he asked where we wanted to go.  The lead EMT responded with, well Children’s is not the closest hospital so would you rather go to St. Anthony’s…and that is when I start to lose it.  I explain that St. Anthony’s pediatric ER is not equipped to handle Jackson’s needs and I refuse to let anyone take him there.  The EMT decides to continue on his spiel about going to a closer hospital.  To which I respond with, well if you really want to take him to a closer hospital and then pay for the helicopter ride to the hospital we want to go to, then be my guest.  Now I have 4 men looking at me funny in my living room.  The EMT wanted to make sure I knew that his ambulance is not equipped to handle things if Jackson has another seizure on the way and given the time of morning the traffic is going to be unpredictable, making sure I understand the risks.  My final response in a not so nice tone was, I will take that risk because my son has a better chance of making the ambulance ride to Children’s than going to an ER that can’t read a weight chart and do the conversions for the medicine he needs, let along get a proper reading on his blood pressure.  You have sirens; if you need them use them.  I was so ready to lose it further on this guy….or tell him screw off I will drive him myself.  It is only a 10 mile difference without stop lights to go to Children’s over St. Anthony’s.  I personally think it is easier to get to Children’s because it is all highway.  I was so mad….

Sara rode the ambulance with Jackson and the EMT apologized for arguing with me.   He said it is their procedure to make sure they take someone to the closest hospital and wanted to make sure we understood the risks.  Sara explained to him in better detail of our experience at the “closer” hospital. The EMT then tells Sara he has a 3 year old daughter that has seizures and he understands what we are going through.  WHAT! OMG…so why give me that much trouble about what hospital I want my son to go to.  Geesh… 

I arrived to Children’s and I didn’t see the ambulance on the way this time.  I may have mentioned this in a different post, but you have to go through security at the ER at children’s, it isn’t as bad as TSA, but you do have to walk through a metal detector and they will go through your belongings.  The security guard this day was a much older gentleman.  He asks me if I have anything sharp, not once, not twice, but three times.  After you pass though the metal detector, security will ask what patient and your relationship to the patient.  Before this guard can ask I say, “my son just came in on the ambulance’. The guard responds, “Hamilton?”  I said yup and then he asks me, “What is your relation to the patient?”  After rolling my eyes because I had just said “MY SON” I respond, “Mother”.  The guard looking very confused responded with, “then who is with him?”  With a big smirk on my face I respond, “His other mother”.  Whoa…  the look on his face.  I thought for sure he was going to ask me for ID at this point, but he printed off my badge and handed it to me with a look of disgust.  Good thing I had much more important things to attend to than waist any more time with him.

The check-in nurse walked me back to Jackson’s room where he was sleeping.  He was only hooked up to a pulsox and all his vitals were really good.  Sara was talking to the ER attending going over history and medicines. Half way through someone pulled the attending out of the room for a meeting and they told us a different doctor will come in soon. The doctor came in.   Sara started going over the history, told him Dr. Berry-Kravis was our FX/seizure doctor.  The doctor perked up, said he was very familiar with her and that he did some training in Chicago.  After hearing everything Sara had, he said we seemed very versed and he asked what we normally do after Jackson has a seizure.  Our answer was, well we come here because that is what they told us to do.  He asked us if we had a local neurologist who is managing his seizure care.  Our answer is, well Dr. McGill is supposed to be his doctor, but we are not getting any responses from his office.  Sara even asked if this ER doctor has any recommendations any of the neurologists here.  He responded with Dr. McGill is a good one to his knowledge.  I don’t think he was prepared for us to ask nor have the responses we had.  The doctor was going to consult with neurology, see what we should do at this point, and come back to us.  We handed him some scripts that we got when we were in Chicago from Dr. Kravis. Sara sends an email to Dr. Kravis and before the ER doctor even come back to the room, Dr. Kravis responds….took her 5 minutes.  She thinks because of Jackson’s erratic sleep patterns this week put him at a high risk to have a seizure this time around.  The Clonidine didn’t cause the seizure, although it may have caused the erratic sleep issues.  Next step is measure the Depakote (anti-seizure) medicine in his blood, she wants to see the levels be around 80, the last seizure the level was around 70.  The ER doctor spoke with neurology and they suggest running some blood tests (same ones we already gave him) and then if everything is good we can go home.  The nurses come in to take some blood and we discussed giving him his morning medicine.  Nurse comes back with some baby food (pureed pears) and a fork that was all they had.  When we tried to give Jackson the medicine, he threw up.  So we waiting a little while and was able to give it to him using a breakfast bar as a positive reinforcer.

We sat and waited for the blood results.  Sara turned on cable TV, something we don’t have at home.  Ironically Dr. McGill’s office calls to schedule a follow up visit.  I explain that we are currently at the hospital in the ER because Jackson had a seizure this morning.  The lady did not even respond to that.  The phone is cutting out and I handed Sara the phone since she is the keep of the schedule anyway.  The phone connection drops and the office calls back.  Sara explains to the lady that we haven’t had our follow up from February, nor April, and now we have today.  The lady is super confused and said normally follow visits are scheduled 6 months after a seizure.  WHAT!?! 6 MONTHS?!?  Sara explains, we were supposed to have visit in April, but Jackson was in the hospital on the day of the follow up (8 weeks after, not 6 months).  Since Jackson was in the hospital, the neurologist on the floor told us he consulted with Dr. McGill and not to worry about that appointment.  Then we were told someone from Dr. McGill’s office would call us within 2 weeks to reset it up, but if we don’t hear to call and schedule on our own.  It is the end of June; it is well past 8 weeks for them to be calling us.  We also ran into a medicine refill debacle in between then to which Sara had to call multiple times to get anywhere.  So when we were in Chicago we asked Dr. Kravis to manage things because she at least responds to us.  Since Dr. Kravis agreed to manager his seizure and we were completely frustrated over the medicine refill mess we never called them to schedule the follow up.  Here it is about 9 weeks later and they are calling for the follow up from April.  This is so ridiculous.  According to the website Children’s is ranked 7th in the nation when it comes to Pediatrics in Neurology, I don’t know how that is possible.  We can’t get a phone call back in a timely matter and after a few days when we got a call from the doctor over the medicine mishap he was rude and tried to blame the mismanagement of records on Children’s side instead of his office.  We are on our second neurologist here at Children’s, soon to be on our third at this rate.

Jackson’s blood results came back; the ER doctor wrote the details down for us and said he was waiting to hear back from the neurology floor.  The doctor figured we would want to email them to Dr. Kravis.  We sent her the results, she responded within 10 minutes.  The white blood cell count was high, but she expected that after the seizure.  The Depakote level was 55, so she wants to increase that.  She thinks two pills in the morning, 1 afternoon, 2 at night.  After an hour, the doctor came back with the same information the Dr. Kravis gave us except less detail.  The doctor wrote us a new script for the additional anti-seizure medicine and was highly impressed with Dr. Kravis.   We got Jackson dressed to leave as we were waiting for the discharge papers, Jackson threw up again, but he was all smiles and flirted with the nurse when she came in.   It was over an hour since he had his medicine, so there was on concern there.  I asked if we could take a vomit bucket just in case for the ride home.

Jackson was very alert all the way home.  He loves riding in the car and looking at the other cars on the road.  We were all hungry so I stopped at McDonalds; Jackson threw up as we waited for our food.  Then he wanted to drink up his apple juice.  Sara was leery in giving him too much.   When we got home Jackson wanted to eat. This child puts away some food.  He did not get sick anymore, but he seemed slightly feverish throughout the day.  Our AC was running non-stop and not getting below 80 so that may have played a little role.  I didn’t not sleep much over the weekend constantly using my cell phone to make sure that his eyes were closed and he was sleeping. We had a busy weekend ahead of us, but knew the best thing to do was try to keep it easy for Jackson as much as possible. 

Monday, June 18, 2012

So Busy

We have been so busy the last few weeks and weekends that I have not had any time to share our exciting adventures.  So I will try to be brief to get everyone caught up with our family.  LOL!

Over the memorial holiday we traveled to Chicago to see Jackson’s fragile X doctor, Dr. Elizabeth Berry-Kravis.  We left on Monday for the Tuesday appointment.  We only stayed one night and drove back, we are brave.  Jackson did really well; it took us around 6 ½ hours there and about the same back. I think trip took more of a toll on us.  The appointment went really well.  I entertained Jackson while Sara asked as many questions as one could ask.  Dr. Kravis is such an amazing woman; I am not sure how she fits all that information in her brain.  She was very impressed with Jackson’s progress.  Last year when we visited Jackson only had about 3 signs for communication, now he has communication oh plenty.  The room we were in had a computer that Jackson was obsessed with.  Dr. Kravis said that all her FX patients love the computer and felt he couldn’t break it.  He somehow changed the video to display sideways using nothing but keystrokes.  I might be a computer geek, but this computers system settings were locked down, so without knowing what in what sequence the keys he pushed I could not get the display back to normal before our appointment was over.   Dr. Kravis wants to try Jackson on a medicine during the day to help with hyper activity and focus.  She also was impressed with the amount of energy he had during the time we were in that room.  Sara is going to brave the medication next week while the two of them are both home for two weeks.
Watch out Bill Gates!

The following weekend we went to a “mommies like us” outing and we had an open house.  It was nice to meet other families like ours with two mommies.  It was hard for us to get to know the mommies as Jackson is a busy toddler.  I brought my camera to take pictures of the other families, but didn't a get a chance.  After lunch we dropped Jackson off for a nap at grandmas, and then Sara and I did a 24 hours blitz deep cleaning to our house making it all sparkly for the whopping two couples who came and took a look see.  The only feedback we got from the agent who was at our house, which by the way is not our actual agent, was one couple really liked it and was going to speak with their agent; the other couple was concerned about the roots for the tree in the front yard.  We have not heard from our actual agent since our open house, so my guess is she did not follow up with the agent of the couple that said they liked it.  So in the 3 months our house has been on the market we have only had 3 lookers.  Either way I am still very positive that someone will fall in love with our house and put an offer on it soon.

Every weekend Sara and I are going to as many open houses as we can.  We switched buyers’ agents recently and our new agent has been very helpful.  We have gone to a few houses outside of open houses and taken a 2nd look at two houses we are really interested in.  Both houses our listed outside our budget, one of which has come down in price, just not down enough…  Any spare time we have at home we have been online looking at houses.  Pretty much that is where our spare time has gone too.

Sara started working at Howard Park Center a few weeks ago.  Jackson is also attending school there over the summer.  She loves her job and Jackson is doing well at school.  Last week he had a few hair pulling incidents, we are really trying to find the best way to manage this.  We asked Dr. Kravis about it when were in Chicago and she said a behavior analyst would be able to advise us best.  This is the one behavior that can’t be ignored as it harms others.  We keep trying multiple avenues, I hope we find a working one soon.

This past weekend we walked for one of Sara’s high school classmate’s daughter at the “Seize the Day Walk”.  The event was in Kirkwood at the train station.  Jackson got to see a train go by, which was probably his favorite part of the day.  They had a lot of silent auction items available, a bubble bus, food, and beverages.   The walk started early, we were there just before 7 AM.  We finished the walk just after 8 AM and it was already very hot.  Jackson lasted till about 8:30 AM before he was ready to go.  
Watching the train

That is not Thomas Na-na!

We stopped at his favorite store on the way home, Target.  We got home in time for lunch and a nap, and we all took part in the nap.  It has become a weekend family tradition, if Jackson naps, we all nap.  After then nap, Jackson and I vacuumed that house.  We are using this as a reward for after naptime.  I was able to a snapshot of him helping. 
 My little helper

Sara and I had a date night for the evening.  We went to Elephant Bar in West County.  I have an onion allergy so it was difficult for me to find a menu item, we didn’t realize that before booking the reservations.  We ordered the lettuce wraps for an appetizer, but it had red, white, and green onion throughout.  Our waiter was nowhere to be found after the plate was dropped off, so I told Sara to go ahead and enjoy them while I enjoyed my yummy adult beverage.  After dinner, we drove by a house we had on our list to go see, but the backyard was nothing but a huge slope, no level ground at all.  We drove around a little bit more in the area and then stopped at Blockbuster.  Since the evening was falling a little short we grabbed a comedy, Tower Heist.  The movie was hilarious, just what we both needed.

Sunday we both spent time with our dads.  My siblings, sister-in-law, and I took my dad to 66 Roadhouse for brunch.  Because we booked the reservations late, we had an early bunch, but it did not disappoint.  There was plenty of great food.  My sister-in-law is related to the owners, but I didn’t know that before deciding on that location, small world. That did not get us any sort of discounts though.  Sara and Jackson got home shortly after I did.  Jackson was really tired, so we all took a nap before lunch.  We slept 2 ½ hours, wow I guess we all needed that.  Sara vacuumed after lunch while I packed up swimming gear.  I took Jackson over to my parents for a swim so Sara could do some cleaning.  She suggested it before you go thinking I am a bad guy.  Jackson and I had a blast at the pool.  We bought him water wings with a chest belt and within a few minutes he was swimming on his own.  He needs some work on kicking those feet, but by the time we getting to ready to get out of the pool he was starting to get it.  My dad grilled some shrimp and steak.  I ate some before we headed home and it was so yummy, Jackson didn’t really want any part of it and I was still full from our late lunch.  Sara cooked some baked spaghetti and he was ready to eat as soon as we got home. 
Mr. Independent!

Kicking his legs

This coming week we have a lot going on.  Sara is going to a support group on Tuesday night.  We might try to see a few houses.  We also are switching agents, so we have new contracts to sign.  Friday night I have softball with my ladies. Saturday is the 6th Annual Fragile, Not Broken Walk for Knowledge.  If you haven’t already, it is not too late to register to walk with Team Jackson.   Our team is going to be wearing Cardinals gear.  Go CARDS!  It is a fun family event with games, pony rides, and raffles.  Come visit our team page for more details and read our story: TEAM JACKSON