So we pulled out all the Christmas stuff and started decorating the tree. We were going to get a real one as well as put up our fake one but we decided to used the money that we would have spent on a real tree to buy presents for some friends who are a bit of a bind right now.
So everyone except Noah is putting on the ornaments although Parker is more into directing than participating. Noah crawls around the back and the new dog follows...luckily the tree is pretty sturdy. When we were just about done we sent Reece to the basement to get some ice cream. He comes back and we learn that it had been left out and was completely melted. Well most people would pour it into the sink but Reece put it in the recycling bin as is (you see where this is going right?). Noah pulls it back out as his favorite food on the planet is ice cream. He makes it partially through the kitchen/family room door before he drops it. No problem for him, he just gets a spoon and starts scooping it up. Gross. When you are putting in new flooring and have the wood floors in but still have not started on the kitchen travertine guess what happens? It soaks into the subfloor between the old and new flooring. Not only that but melted ice cream sinks nicely into the grooves of really nice Brazilian hardwood. Toothpicks are helpful in case that ever happens to you.
That was the end of happy, fun, family time.
Most of the time I can laugh this stuff off and move on but this was not one of those times. It has been really rough this year with Noah and this was the proverbial straw for me. I never sit around and feel sorry for myself over Noah. I don't have time and it does no one any good plus I know it would be too easy to fall into a permanent funk and I have three other children that need me. I just lost it. It is so hard to parent a special needs child. Seeing blogs and pictures of other families who go camping, to Disney World, etc is very hard because we cannot do those things as a complete family. If we do something like that we have to find someone to watch Noah because he makes it impossible otherwise. Even something as simple as going to the local farms is a major ordeal. We no longer even go to church together. Scott and I takes turns staying at home with Noah and the other takes the 3 oldest. It is so unfair to the other kids. They get that we have to make allowances but when they must give up so much for one person in the family.....I worry that they will grow to resent it or him or even me because the frustration needs a target and there is not a clear one in this case.
After the ice cream hit the fan, er floor, Reece just said he was going to bed. It is not right that this will be his memory of decorating the tree. I have really struggled this year with my emotions over Noah's challenges. There is no clear path with his diagnosis. None of the specialists can tell us what to expect. It isn't that he is retarded or stupid. He knows his numbers, letters, shapes, etc but when we can't even have a two sentence conversation what do we do?
On the plus side Parker is doing great at homeschooling. He is "recovering" from the disaster that was second grade. We are very blessed to have a wonderful family from church who lives one street over and also is a homeschooling family. I have leaned on her quite a bit. I am even thinking of yanking the oldest two within the next year or so. I don't trust myself to do it right now so Parker gets to be the guinea pig for awhile. We have had a lot of fun so far and I am very happy with our decision.
Wednesday, December 9, 2009
Sunday, November 29, 2009
No profile.....
I had to remove any trace of myself profile-wise because of another blog that is connected to me. No I am not doing anything illegal (that would be really blog-worthy!). It is waaaaaaay to long of a story and I am waaaaaay too tired to explain it right now.
Great Thanksgiving, exhausting Thanksgiving. They are not mutually exclusive. :)
Great Thanksgiving, exhausting Thanksgiving. They are not mutually exclusive. :)
Sunday, November 22, 2009
Still a blogging failure....
I guess I should change my blog to "Farnsworth Quarterly Report".
In our last issue Parker was having a bad time in school. I am happy to report that is not longer the case because *drumroll* I have pulled him out and we are official homeschoolers!!!! It is the best decision I could have possibly made. He was withdrawing and regressing at a terrible rate. i felt that we were losing Parker to the Wii and Club Penguin. Those had become his escapes because he was so unhappy. I think the thing that finally clinched it is when my fabulous friend Nikki commented that on Friday's Parker was shut down towards everyone but come Saturday afternoon he was a happy little camper. I finally pulled the plug on what was a bad situation.
There were so many issues that I couldn't possibly name them all. I have come to the conclusion that most public school systems are ridiculous. How is it that 25-30 children can be put into a room and they are expected to be on the exact same learned level as everyone else in the class. That completely discourages anyone from being gifted because no one has the time for one-on-one instruction time. Gifted students are "dumbed down" to the level as the majority or their classmates. This was one of the main issues with Parker. We have caught him up on everything except social behavior. He is about 18 months behind and is the youngest kid in his grade. Unfortunately (for the schools) he is also one of the smartest and can do work several grade levels ahead. He was bored and hated doing work that he could do in his head. He didn't want to write it down because it was so easy for him. This situation had disaster written all over it. He wold be bored, act out and get a referral. In the past two years he never received a referral (at the last school) and I think that is partly because his teachers were male. Sorry but there needs to be more men in the public schools. In the two months that Parker was at Chancey he received no less than 12 referrals. How can he go from none in two years to more than one a week?
You cannot tell me that he changed that much over the summer. Basically Parker was not going to sit there and do work that was so far behind him it would be like asking a high school senior to sing the ABC's over and over.
I am very happy with the decision I made and am having a great time so far. Parker is doing great and his little spirit is healing quickly. As another wonderful friend said "You have to think of Parker as if he were in Triage for his damaged spirit". That is what we are doing. *Putting soapbox away*
As for the rest, Noah is doing wonderfully and has a couple of words now. We love, love, love his school, teachers and speech therapist but JCPS will not let him stay after this year (don't even get me started).
Connor is doing well but needs to become more organized. Reece is doing well but got a "D" due to not turning in something that had nothing to do with grades or work...it was something I was supposed to sign but Reece forgot to give it to me. I will not go off on my tangent about that grade but suffice to say that I am beyond angry that my son went from a "B" to a "D" and it had nothing to do with his work.
We are seriously looking into homeschooling them all (except Noah) within a couple of years. It is a difficult decision as I was going to return to school in the Spring to finish my degree. I am so close but I am sure the season will come when it is my turn. The kids cannot be put on hold but my education can.
We are getting rid of all the carpet! We have gorgeous hardwood in the entry, dining room, hall and family room now. We are not even close to being done. We will also do all the rooms upstairs, our rooms and then we are putting travertine in the kitchen, breakfast nook and all three bathrooms as well as the fireplace surround. This is a small part of the floor. We are ripping out that awful vinyl in the picture.
When the house goes up for sale in the next year or so we want everything to be ready and updated.
We hope to buy some land with a couple other people who are on the same timeline as our family. Luckily we all get along and so do our kids. Hopefully it will come to fruition.
Anyway I have to fall into bed so I can get ready for the 26 (!!!!) people who will be here on Thanksgiving. I love to have a full house on the holidays.
Monday, September 21, 2009
Blogging failure
I cannot believe that it has been so long since I wrote something.
The summer was fun but really chaotic. We had a great time in Mexico and basically want to build a hut on the beach to live in. At the end of the summer we took the oldest three kids to Great Wolf Lodge. It was really fun and no one had to wonder where Noah had wandered off to every 30 seconds.
School has begun and things are crazy as usual. Reece and Connor have great teachers and seem to be doing well. Parker has a wonderful teacher but is off to a very rocky start. Parker was in ECE (special education) for all of kindergarten and 2 months of 1st grade. He stayed at Zachary Taylor (not our home school) for the rest of first grade even after he went mainstream fulltime. He had an amazing teacher who was great with him. This is the first year that he has gone to school with his brothers, ridden the regular bus, not had a male teacher, and first time at his home school. Tons of changes.
It has been rough to put it mildly. He has not really felt completely at ease at Chancey. Even with his brothers there he is just not familiar with anyone or anything and it has really undone a lot of progress. He has had constant meltdowns/tantrums and already he has two referrals. He got a new doctor because the old one was awful (why would someone who obviously does not like kids become a child psychologist?) but the new one was even worse. He now has a new, NEW psychiatrist. He is actually my shrink. Yes people as startling as it may be.....I see a psychiatrist and he is the bomb. *Tangent* When I first went to him I noticed that he had a University of Oklahoma degree so I asked him about it...long story short...he grew up less than 1/2 mile from me and his mother still lived 1/2 mile from my parents AND he, my mother, myself and two aunts all graduated from the same high school. WIERD!!! He keeps trying to convince me to go to law school.
Sorry. So my psychiatrist thinks that he is very close to being ADHD but he doesn't quite fit the criteria. Wow how surprising since he doesn't fit any label most people have tried to slap on him. He is not autistic, ADD, Aspergers, but he might be a little ADHD. Why is it so important for adults to label kids? He has been evaluated more times than I can count and not once has he ever had a definitive label. It was always "maybe this but maybe not.
So we are trying to find a happy medium in a lot of different categories right now with Parker.
Noah is in a class of only four kids. We love his teachers and the school. They formed this class for non-verbal kids and they have some very cool technology and almost a 1/1 student teacher ratio. We are thrilled. Noah is doing better but not great. We no longer go to church as a family any longer because he became impossible to manage. After one really bad Sunday that ended with me sobbing in the RS room we decided that one of us will take the older three on a rotating basis. It sucks but it is either that or we just stop going altogether.
Now that Noah is in school I have about 7 hours with no kids. I thought I would have tons of time to get things done but the day is over so fast that I never get everything done. It is really nice to have some quiet though.
I am SO tired as it has been a very long and stressful day. I am going to time travel back to the 1950's and read Trixie Belden.
The summer was fun but really chaotic. We had a great time in Mexico and basically want to build a hut on the beach to live in. At the end of the summer we took the oldest three kids to Great Wolf Lodge. It was really fun and no one had to wonder where Noah had wandered off to every 30 seconds.
School has begun and things are crazy as usual. Reece and Connor have great teachers and seem to be doing well. Parker has a wonderful teacher but is off to a very rocky start. Parker was in ECE (special education) for all of kindergarten and 2 months of 1st grade. He stayed at Zachary Taylor (not our home school) for the rest of first grade even after he went mainstream fulltime. He had an amazing teacher who was great with him. This is the first year that he has gone to school with his brothers, ridden the regular bus, not had a male teacher, and first time at his home school. Tons of changes.
It has been rough to put it mildly. He has not really felt completely at ease at Chancey. Even with his brothers there he is just not familiar with anyone or anything and it has really undone a lot of progress. He has had constant meltdowns/tantrums and already he has two referrals. He got a new doctor because the old one was awful (why would someone who obviously does not like kids become a child psychologist?) but the new one was even worse. He now has a new, NEW psychiatrist. He is actually my shrink. Yes people as startling as it may be.....I see a psychiatrist and he is the bomb. *Tangent* When I first went to him I noticed that he had a University of Oklahoma degree so I asked him about it...long story short...he grew up less than 1/2 mile from me and his mother still lived 1/2 mile from my parents AND he, my mother, myself and two aunts all graduated from the same high school. WIERD!!! He keeps trying to convince me to go to law school.
Sorry. So my psychiatrist thinks that he is very close to being ADHD but he doesn't quite fit the criteria. Wow how surprising since he doesn't fit any label most people have tried to slap on him. He is not autistic, ADD, Aspergers, but he might be a little ADHD. Why is it so important for adults to label kids? He has been evaluated more times than I can count and not once has he ever had a definitive label. It was always "maybe this but maybe not.
So we are trying to find a happy medium in a lot of different categories right now with Parker.
Noah is in a class of only four kids. We love his teachers and the school. They formed this class for non-verbal kids and they have some very cool technology and almost a 1/1 student teacher ratio. We are thrilled. Noah is doing better but not great. We no longer go to church as a family any longer because he became impossible to manage. After one really bad Sunday that ended with me sobbing in the RS room we decided that one of us will take the older three on a rotating basis. It sucks but it is either that or we just stop going altogether.
Now that Noah is in school I have about 7 hours with no kids. I thought I would have tons of time to get things done but the day is over so fast that I never get everything done. It is really nice to have some quiet though.
I am SO tired as it has been a very long and stressful day. I am going to time travel back to the 1950's and read Trixie Belden.
Friday, May 22, 2009
Good and the bad
Well school is coming to a close and I am happy yet also dreading it. Entertaining 4 kids daily will be exhausting but fun. I am also leaving for Mexico on June 7th and cannot wait. I desperately need to get away.
The dread of summer is due to Noah. It sounds awful but wait until you hear my reason. First, Noah loves to get out of the house and run off. Since he doesn't talk and doesn't understand danger this makes it way more stressful that it could be. We recently got him a Brickhouse Child Location device but we have to pin it on him and it cannot get wet. Second, he seems to know every single time I sit because that is when he comes to get me so he can drag me around until he finds whatever he wants and then I am supposed to get it for him. I cannot tell you how tired I am of that. It doesn't matter if he wants a drink or if he wants to turn the ceiling fan on/off/on/off/on/off/on/off, etc I am dragged to it by my finger. If I don't comply with his "request" he immediately begins to scream and throw a tantrum. You cannot reason with him. He can count, he knows his colors and shapes but you cannot explain why playing with the box fan for 6 hours is not your idea of a fun time.
Good News! We found a school that we think will be able to get Noah speaking. Bad News! It costs $12,000. I will be fighting the school system to get them to pay but no matter what he is going. We are not moving to Oldham County and I am ebaying my heart out to come up with the tuition. Someone offered me $30,000 to be a surrogate but I have to draw the line somewhere. Being pregnant for someone else is not worth $30k.
Sorry I digress (as usual). I feel really overwhelmed right now with Noah. Because of him our family options are growing smaller and smaller. We are so limited to what we can do because Noah can, will and has ruined activities for us all so sometimes (most of the time) it is easier to just not go anywhere. This has grown to include church. Scott and I now go on alternate Sundays because he refuses to go to class even if we go with him. Complete tantrum/meltdown. It is ridiculous. I feel like my family is being held captive daily.
This is why I will live in a shack to pay for this school. Reece has to kiss South Oldham (or East...we were not quite sure yet) goodbye for middle school because we cannot afford $1333 a month for this school and a new mortgage payment. That is actually more than my current mortgage. Yikes. If he starts talking it will be worth every single penny though.
If anyone has any great ideas on how to pay for this place I would love to know.
The dread of summer is due to Noah. It sounds awful but wait until you hear my reason. First, Noah loves to get out of the house and run off. Since he doesn't talk and doesn't understand danger this makes it way more stressful that it could be. We recently got him a Brickhouse Child Location device but we have to pin it on him and it cannot get wet. Second, he seems to know every single time I sit because that is when he comes to get me so he can drag me around until he finds whatever he wants and then I am supposed to get it for him. I cannot tell you how tired I am of that. It doesn't matter if he wants a drink or if he wants to turn the ceiling fan on/off/on/off/on/off/on/off, etc I am dragged to it by my finger. If I don't comply with his "request" he immediately begins to scream and throw a tantrum. You cannot reason with him. He can count, he knows his colors and shapes but you cannot explain why playing with the box fan for 6 hours is not your idea of a fun time.
Good News! We found a school that we think will be able to get Noah speaking. Bad News! It costs $12,000. I will be fighting the school system to get them to pay but no matter what he is going. We are not moving to Oldham County and I am ebaying my heart out to come up with the tuition. Someone offered me $30,000 to be a surrogate but I have to draw the line somewhere. Being pregnant for someone else is not worth $30k.
Sorry I digress (as usual). I feel really overwhelmed right now with Noah. Because of him our family options are growing smaller and smaller. We are so limited to what we can do because Noah can, will and has ruined activities for us all so sometimes (most of the time) it is easier to just not go anywhere. This has grown to include church. Scott and I now go on alternate Sundays because he refuses to go to class even if we go with him. Complete tantrum/meltdown. It is ridiculous. I feel like my family is being held captive daily.
This is why I will live in a shack to pay for this school. Reece has to kiss South Oldham (or East...we were not quite sure yet) goodbye for middle school because we cannot afford $1333 a month for this school and a new mortgage payment. That is actually more than my current mortgage. Yikes. If he starts talking it will be worth every single penny though.
If anyone has any great ideas on how to pay for this place I would love to know.
Saturday, April 4, 2009
April is Autism Awareness month
So technically I don't have an autistic child. When Parker was three he was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). Here is the "official" explanation:
(PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.
So it means sorta autistic but not actually autistic and not aspergers but somewhere on there....we think.
I count myself lucky (now). Classic autism is much more involved and difficult to pin down and treat. We went through all the classic therapies and added chiropractic, vitamins, supplements, cranial therapy, psychological sessions, etc. Since he didn't really have a great dx (diagnosis) it was hard to know what direction to go. After one really bad month we went to to a psychiatrist and he said that he had OCD and major anxiety which also involved sensory issues (auditory for Parker) and behavioral issues in an effort to get away from all the auditory overload. Basically some kids cannot filter out some of the things around them so they hear the TV, phone, all conversations, humming lights, noises outside, etc. Parker was put on an anti-anxiety and an anti-psychotic that is used for OCD. Within days we had a new child. His language exploded, he was calm but not catatonic, he interacted it was amazing. I wish that some of the non-pharmaceutical options worked for Parker but each child is different. Some do great on the gf/cf free diet some don't, some respond to therapy and some don't. As a parent I think you are at least obligated to try them all. Some kids don't respond to anything. It is a very hit and miss thing.
We have had minor setbacks but most are with Parker going completely mainstream and dealing with that. I will take that setback any day over all the crap we went through before. His IQ is above average and he is still in the top math and reading group. They actually had to bring him down a level reading wise because there was not a group that was reading as high as him :)
He is no longer considered to be on the spectrum at all. He still has some social issues to overcome but I consider him a walking miracle. He is so bright and smart but still says the funniest things. I thank God that he has Reece and Connor because they teach him things that cannot be learned in therapy like punching a kid in the face when the teasing goes too far (our very first referral to the principal!). Seriously though he has come so far and I am very grateful for that.
For others though this is a struggle that is 24/7/365 and maybe for life. It is a difficult way to live. Just the time and money involved is more than most families can give because insurance does not cover autism therapies because they are considered experimental. ABA which has been prover to get kids off the spectrum is an intense 40 hour a week therapy. It can cost $65 an hour. Obviously most kids do not receive this treatment because it is not covered. An hour of Speech and OT is not going to do anything to help these kids. I am really excited that Obama has put so much money towards research and special education. I hope that this may be the beginning of something good for these families. Goodness knows they need it.
Jenny McCarthy is an amazing person and I cannot say how highly I regard her. Her books are wonderful and I urge everyone to read them. She and her sons pediatrician have written a new book called "Healing and Preventing Autism". I plan to get it today. Although Parker is no longer anywhere on that spectrum there may be some things in there that I can use to get him past the tail end of this.
http://search.barnesandnoble.com/booksearch/store.asp?EAN=9780525951032&distance=2&zipcode=40241&x=0&y=0
(PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.
So it means sorta autistic but not actually autistic and not aspergers but somewhere on there....we think.
I count myself lucky (now). Classic autism is much more involved and difficult to pin down and treat. We went through all the classic therapies and added chiropractic, vitamins, supplements, cranial therapy, psychological sessions, etc. Since he didn't really have a great dx (diagnosis) it was hard to know what direction to go. After one really bad month we went to to a psychiatrist and he said that he had OCD and major anxiety which also involved sensory issues (auditory for Parker) and behavioral issues in an effort to get away from all the auditory overload. Basically some kids cannot filter out some of the things around them so they hear the TV, phone, all conversations, humming lights, noises outside, etc. Parker was put on an anti-anxiety and an anti-psychotic that is used for OCD. Within days we had a new child. His language exploded, he was calm but not catatonic, he interacted it was amazing. I wish that some of the non-pharmaceutical options worked for Parker but each child is different. Some do great on the gf/cf free diet some don't, some respond to therapy and some don't. As a parent I think you are at least obligated to try them all. Some kids don't respond to anything. It is a very hit and miss thing.
We have had minor setbacks but most are with Parker going completely mainstream and dealing with that. I will take that setback any day over all the crap we went through before. His IQ is above average and he is still in the top math and reading group. They actually had to bring him down a level reading wise because there was not a group that was reading as high as him :)
He is no longer considered to be on the spectrum at all. He still has some social issues to overcome but I consider him a walking miracle. He is so bright and smart but still says the funniest things. I thank God that he has Reece and Connor because they teach him things that cannot be learned in therapy like punching a kid in the face when the teasing goes too far (our very first referral to the principal!). Seriously though he has come so far and I am very grateful for that.
For others though this is a struggle that is 24/7/365 and maybe for life. It is a difficult way to live. Just the time and money involved is more than most families can give because insurance does not cover autism therapies because they are considered experimental. ABA which has been prover to get kids off the spectrum is an intense 40 hour a week therapy. It can cost $65 an hour. Obviously most kids do not receive this treatment because it is not covered. An hour of Speech and OT is not going to do anything to help these kids. I am really excited that Obama has put so much money towards research and special education. I hope that this may be the beginning of something good for these families. Goodness knows they need it.
Jenny McCarthy is an amazing person and I cannot say how highly I regard her. Her books are wonderful and I urge everyone to read them. She and her sons pediatrician have written a new book called "Healing and Preventing Autism". I plan to get it today. Although Parker is no longer anywhere on that spectrum there may be some things in there that I can use to get him past the tail end of this.
http://search.barnesandnoble.com/booksearch/store.asp?EAN=9780525951032&distance=2&zipcode=40241&x=0&y=0
Saturday, March 28, 2009
Where o' where has my little Noah gone?????
So Scott was gone today. He took a gun safety course so he can get his carry permit (don't mess with us!). I decided to tackle the ridiculous amount of laundry that has piled up as I have been going through every possession we own trying to decide if it needs to move with us or move to Goodwill. I ignored the rest of the house including my piano which is literally face down in my dining room because I have taken apart as much as I can (real ivory keys anyone?) without Scott's help. Surprisingly they did not make piano's easy to dismantle especially 125 years ago when everything was solid wood and cast iron. I digress.
So the house looked wrecked and there was laundry all over the living room...I open the front door to tell Reece something and here comes my neighbor with Noah. He is not exactly a warm fuzzy guy and has the most kid unfriendly yard/house because they were not going to have kids but the arrival of their son 7 months ago changed that. We are not real trusting of many of our neighbors as they have a fabulous track record ganging up and judging others. We have been the lucky recipients of this several times. Being that they have no problem calling the police, animal control or CPS none of the people who have been on their receiving end want to confront them because they do not want any of the entities listed above showing up on their doorstep. Now to clarify most people here are really great but it just takes a few to mess with the dynamics. I digress again....
So here comes neighbor guy with Noah. I am freaked out because Noah could wander out in the street, go to someone's house who doesn't know him, fall into one of the many fountains/ponds or meet someone's dog, etc. Luckily Noah decided to take his jeans off before he left so he looked like the white trash child coming home. I thanked neighbor guy and then had a talk with the kids about leaving the front door open. We have three locks and an alarm on the front door but when it is left unlocked and/or open it might as well not be there. So I go upstairs and Google "child GPS". I find a child tracking system and am about to buy it when I hear a commotion in the entry hall. I go out on the landing and there is neighbor guy with Noah....again. His dog had run into my total wreck of a house and he had to come in to get him. His house is always immaculate because they have one child who just started crawling and mom watches him so she picks up as well. Lucky. I can't get a word out before he tells me that Noah (pantless) just walked into his house. He looks at me and says "It better not happen again" and walks out. Luckily Reece figures out that one of their friends had left the side gate open and Noah was going downstairs to the basement, out the back door and through the gate (pantless).
We don't allow anyone to go through the gate for just this reason. We gated the backyard just for Noah and Parker and even tore the stairs off our back patio (we put rails up so no one can fall off) so there was one less escape route. Two of the three gates on the fence are padlocked and the only reason the other isn't is because there is a rock where the post should go that is so large we cannot move it even with an iron pry bar. The way that gate is set the ground actually holds it in place and it is hard to open. Our kids know not to go through it but their friends don't listen because they are...well...kids. As stated above, we have numerous barriers on the front door but none of this matters if people don't shut the door/gate.
So I start to fall apart because it had already been a LOOOOOONG week and I just couldn't take any more. I call Nikki who is one of the calmest people I know and just come apart. She calms me down but I call back a few minutes later and ask her to go with me to neighbor guys house. About 30 seconds later she is on the sidewalk.
So neighbor guy answers the door and comes out onto the porch I start talking about crying my eyes out at the same time. My assumption is that if he could understand medically what is going on with Noah he might have some sort of sympathy for the situation or at least understand where I am coming from. I explain his genetic issues and that we don't know about the future, etc, etc....NF1 and dx Unknown...etc. His expression never changes. It was as if I was being more annoying by taking two minutes from his day. He tells me (as I am standing there in a sobbing heap) that he didn't want Noah to get into his pond and get hurt or drown because then he would get sued. Um...seriously if my son drowned I think that would be the last thing on my mind but I am glad that we are focusing on the issue at hand. I thought Nikki was going to lose a vein in her forehead....she maintained that wonderful British calm though.
Back at my house her awesome mother who is visiting and her equally awesome husband Jason are there...I never asked why but that is just the kind of family they are. Her mom offered to go "batter him". I seriously think she would have. Then she offered to do it the night before she flies home (her husband later confirmed that she would definitely have done it). I send everyone off because it is Nikki's sons birthday and I don't want to rain on their parade.
It is so difficult to have a high needs child and it is SO easy to judge families who have one. I used to when I was younger and stupid. You cannot imagine how emotionally and physically exhausting it is to have to know exactly (I mean exact spot) where your child is 24/7. It also means that things that other families take for granted such as simply going to someone's house, the zoo, restaurants, vacations, etc can sometimes be literally impossible. How fair is that to the other kids? It is very alienating as well. Many people do not want to get involved with your family because there is an added element that most do not understand and are intimidated by. I have been lucky enough to find a few people who are crazy enough to take us on and they know who they are. I thank God every night for these dear friends who reach out to me when they know I am at my breaking point. I have zero family within 800 miles so they have become my adopted family.
To the 2-3 people who read this here is my lesson for the day: Please do not assume that families with kids who are not "normal" have it all under control. If you ask us how things are we will give you the rhetorical "fine". It isn't always fine. Most moms are like me. We don't allow ourselves to sit around and feel sorry for ourselves because that is a bottomless pit and it is easy to fall into. You get up and put one foot in front of the other every day. You go the the endless therapies, see neurologists, psychologists, geneticists, radiologists and pediatricians. You take your child in for more bloodwork, MRI's, test after test after test. You do it because we are mothers and that is what we have to do. Please do not pass judgment when you think we are not being good parents. Sometimes we cannot control the situation or the child....we laugh it off but we are not "fine". If you know of something you think we should look at mention it but don't tell us that we "should try it". Believe me, most of us should have an honorary M.D. with all the research we do on our childrens conditions and many of us know what does and does not work. Don't assume because you read something online or in a magazine that it is the miracle that we missed. By all means mention it but don't force the issue. Please, please, please do something as simple as talking to that person. It is very lonely sometimes. Most of all be grateful for your children. I don't know why I was entrusted with these challenges and I am sure that someday it will be clear. Count your blessings when your child talks during sacrament, school, or primary. At least they are able to do so.
So the house looked wrecked and there was laundry all over the living room...I open the front door to tell Reece something and here comes my neighbor with Noah. He is not exactly a warm fuzzy guy and has the most kid unfriendly yard/house because they were not going to have kids but the arrival of their son 7 months ago changed that. We are not real trusting of many of our neighbors as they have a fabulous track record ganging up and judging others. We have been the lucky recipients of this several times. Being that they have no problem calling the police, animal control or CPS none of the people who have been on their receiving end want to confront them because they do not want any of the entities listed above showing up on their doorstep. Now to clarify most people here are really great but it just takes a few to mess with the dynamics. I digress again....
So here comes neighbor guy with Noah. I am freaked out because Noah could wander out in the street, go to someone's house who doesn't know him, fall into one of the many fountains/ponds or meet someone's dog, etc. Luckily Noah decided to take his jeans off before he left so he looked like the white trash child coming home. I thanked neighbor guy and then had a talk with the kids about leaving the front door open. We have three locks and an alarm on the front door but when it is left unlocked and/or open it might as well not be there. So I go upstairs and Google "child GPS". I find a child tracking system and am about to buy it when I hear a commotion in the entry hall. I go out on the landing and there is neighbor guy with Noah....again. His dog had run into my total wreck of a house and he had to come in to get him. His house is always immaculate because they have one child who just started crawling and mom watches him so she picks up as well. Lucky. I can't get a word out before he tells me that Noah (pantless) just walked into his house. He looks at me and says "It better not happen again" and walks out. Luckily Reece figures out that one of their friends had left the side gate open and Noah was going downstairs to the basement, out the back door and through the gate (pantless).
We don't allow anyone to go through the gate for just this reason. We gated the backyard just for Noah and Parker and even tore the stairs off our back patio (we put rails up so no one can fall off) so there was one less escape route. Two of the three gates on the fence are padlocked and the only reason the other isn't is because there is a rock where the post should go that is so large we cannot move it even with an iron pry bar. The way that gate is set the ground actually holds it in place and it is hard to open. Our kids know not to go through it but their friends don't listen because they are...well...kids. As stated above, we have numerous barriers on the front door but none of this matters if people don't shut the door/gate.
So I start to fall apart because it had already been a LOOOOOONG week and I just couldn't take any more. I call Nikki who is one of the calmest people I know and just come apart. She calms me down but I call back a few minutes later and ask her to go with me to neighbor guys house. About 30 seconds later she is on the sidewalk.
So neighbor guy answers the door and comes out onto the porch I start talking about crying my eyes out at the same time. My assumption is that if he could understand medically what is going on with Noah he might have some sort of sympathy for the situation or at least understand where I am coming from. I explain his genetic issues and that we don't know about the future, etc, etc....NF1 and dx Unknown...etc. His expression never changes. It was as if I was being more annoying by taking two minutes from his day. He tells me (as I am standing there in a sobbing heap) that he didn't want Noah to get into his pond and get hurt or drown because then he would get sued. Um...seriously if my son drowned I think that would be the last thing on my mind but I am glad that we are focusing on the issue at hand. I thought Nikki was going to lose a vein in her forehead....she maintained that wonderful British calm though.
Back at my house her awesome mother who is visiting and her equally awesome husband Jason are there...I never asked why but that is just the kind of family they are. Her mom offered to go "batter him". I seriously think she would have. Then she offered to do it the night before she flies home (her husband later confirmed that she would definitely have done it). I send everyone off because it is Nikki's sons birthday and I don't want to rain on their parade.
It is so difficult to have a high needs child and it is SO easy to judge families who have one. I used to when I was younger and stupid. You cannot imagine how emotionally and physically exhausting it is to have to know exactly (I mean exact spot) where your child is 24/7. It also means that things that other families take for granted such as simply going to someone's house, the zoo, restaurants, vacations, etc can sometimes be literally impossible. How fair is that to the other kids? It is very alienating as well. Many people do not want to get involved with your family because there is an added element that most do not understand and are intimidated by. I have been lucky enough to find a few people who are crazy enough to take us on and they know who they are. I thank God every night for these dear friends who reach out to me when they know I am at my breaking point. I have zero family within 800 miles so they have become my adopted family.
To the 2-3 people who read this here is my lesson for the day: Please do not assume that families with kids who are not "normal" have it all under control. If you ask us how things are we will give you the rhetorical "fine". It isn't always fine. Most moms are like me. We don't allow ourselves to sit around and feel sorry for ourselves because that is a bottomless pit and it is easy to fall into. You get up and put one foot in front of the other every day. You go the the endless therapies, see neurologists, psychologists, geneticists, radiologists and pediatricians. You take your child in for more bloodwork, MRI's, test after test after test. You do it because we are mothers and that is what we have to do. Please do not pass judgment when you think we are not being good parents. Sometimes we cannot control the situation or the child....we laugh it off but we are not "fine". If you know of something you think we should look at mention it but don't tell us that we "should try it". Believe me, most of us should have an honorary M.D. with all the research we do on our childrens conditions and many of us know what does and does not work. Don't assume because you read something online or in a magazine that it is the miracle that we missed. By all means mention it but don't force the issue. Please, please, please do something as simple as talking to that person. It is very lonely sometimes. Most of all be grateful for your children. I don't know why I was entrusted with these challenges and I am sure that someday it will be clear. Count your blessings when your child talks during sacrament, school, or primary. At least they are able to do so.
Saturday, March 21, 2009
Friends....
In looking over my last post I realize that I am still using blogger as a dumping ground. I am not an unhappy person by nature but I think it is better to dump negative stuff on a blog than on other people.
I am not constantly angry with God. I guess that was not too clear. It would take too much energy (as stated by Holly) to be that angry all the time. It is so frustrating though to not be able to do the average, normal, everyday stuff that people take for granted. It took so long to get Parker to the point where he can do pretty much anything that his brothers can but Noah is the wild card.
Anyway I wanted to post about my wonderful friends. Some are here in Louisville while others are across the country. It took me until I was in my 20's to really find friends that I know I will have for life. The kind of friends that I can call at 2am and they will be there for me. First I have to say how great it was to see Holly last weekend and how much we miss their family. They were kind enough to let us share many, many holidays with them as neither of us had family in the area. It is still odd to have them gone. I cried like a baby the day before they left...it took awhile for it to hit me that they were really leaving. I was at her house joking and laughing and then while driving home the floodgates opened (not a good thing on the highway). Holly is an amazing person who just radiates light. She will do anything to help anyone.
Rebecca is one of the few people who is LDS that I never have to edit things for content. What you see is what you get with Rebecca and I love her like a sister. She was at the hospital before my husband when I had my first child and stayed all day. We had wonderful times together when we were newlyweds in DC with no kids. We don't see each other as much as I would like but when we do it is as if we never left. She has amazing strength and resilience. She makes me want to be a better person.
Nikki. What can I say about my favorite Brit that I haven't already said? She is so giving, caring, and loving. She adopts any child who comes in her house. She lays awake at night worrying about others because she has such a big heart. I absolutely love her and wonder what I ever did before she moved in. She can get me out of a bad mood better than anyone by just making me laugh and I love our Barnes and Noble nights where we just sit and talk for hours. I hope she doesn't move because if she does we are going with her (she says the same about us). We joke about buying land and building two houses connected by a big garage. That would be great. Why not? Her kids already call me "second mommy" and my kids think she should just move in.
There are so many others not named above such as Larissa (been there for 5+ years), Suzanne who has held my hand through many things, my mom, my sisters, and people from church and friends from Oklahoma all who have helped me and been there through so much. I am so blessed to have such wonderful people in my life.
I am grateful for each one of them.
I am not constantly angry with God. I guess that was not too clear. It would take too much energy (as stated by Holly) to be that angry all the time. It is so frustrating though to not be able to do the average, normal, everyday stuff that people take for granted. It took so long to get Parker to the point where he can do pretty much anything that his brothers can but Noah is the wild card.
Anyway I wanted to post about my wonderful friends. Some are here in Louisville while others are across the country. It took me until I was in my 20's to really find friends that I know I will have for life. The kind of friends that I can call at 2am and they will be there for me. First I have to say how great it was to see Holly last weekend and how much we miss their family. They were kind enough to let us share many, many holidays with them as neither of us had family in the area. It is still odd to have them gone. I cried like a baby the day before they left...it took awhile for it to hit me that they were really leaving. I was at her house joking and laughing and then while driving home the floodgates opened (not a good thing on the highway). Holly is an amazing person who just radiates light. She will do anything to help anyone.
Rebecca is one of the few people who is LDS that I never have to edit things for content. What you see is what you get with Rebecca and I love her like a sister. She was at the hospital before my husband when I had my first child and stayed all day. We had wonderful times together when we were newlyweds in DC with no kids. We don't see each other as much as I would like but when we do it is as if we never left. She has amazing strength and resilience. She makes me want to be a better person.
Nikki. What can I say about my favorite Brit that I haven't already said? She is so giving, caring, and loving. She adopts any child who comes in her house. She lays awake at night worrying about others because she has such a big heart. I absolutely love her and wonder what I ever did before she moved in. She can get me out of a bad mood better than anyone by just making me laugh and I love our Barnes and Noble nights where we just sit and talk for hours. I hope she doesn't move because if she does we are going with her (she says the same about us). We joke about buying land and building two houses connected by a big garage. That would be great. Why not? Her kids already call me "second mommy" and my kids think she should just move in.
There are so many others not named above such as Larissa (been there for 5+ years), Suzanne who has held my hand through many things, my mom, my sisters, and people from church and friends from Oklahoma all who have helped me and been there through so much. I am so blessed to have such wonderful people in my life.
I am grateful for each one of them.
Friday, March 20, 2009
I think I have been blackballed--whatever.
So another baby shower full of people I know and the person is someone that I see a great deal in the summer months...not invited. At first (see other posts) it really bothered me...now not so much. I have come to realize that I am vastly different than most people at church. There are a few who are very much like me in their views and beliefs ( I won't name names because they tend to downplay it) .
I tend to say what I think and I am not a sheep who will follow what someone says without figuring out how it fits into my life. I cannot stand people who judge others because they are not doing what has been stated over the pulpit. What most people don't stop to think about is that sometimes that is impossible. Example: Way back when President Benson urged mothers to not work and come home to their children. My institute teachers mother went back to work right when this was said in General Conference. Many people judged her and talked negatively about this decision. What they were not aware of is that her husband was unable to work because of health issues despite looking fine...he wasn't.
Blanket statements drive me nuts. When I hear in classes that you MUST sustain the local leaders it angers me. I know of many instances where certain people could not do this. Here are several examples: In my stake there was a bishop who molested many boys and was later arrested for solicitation of a minor (boy). Another bishop embezzled millions of dollars from the tithing fund and a dear, dear friend of mine was molested by her father (as was her sister) and this person was not only in the bishopric but also served as a veil worker in the temple.
So when I am TOLD that I MUST sustain leaders I balk at that. I DO sustain my local leaders because I believe they are good people and my bishop is amazing. But those who judge before they know details are so wrong. Maybe they should start handing out copies of the bishops handbook. Gossiping is right below adultery because it can absolutely destroy a family and/or their faith in the church. Another example: When I was 15 my mother decided she was done with our ward. For years it had been the most gossipy ward but now it had focused the gossip on my family. Horrid (and untrue) things were said about my father, brother and other various members of my family. To this day I am the only person who has come back to church. From that same ward I had two friends whose families went through the same thing and no members from either family have ever gone back. I know there are more but since I have not attended that ward for 20 years I only know of those. Just those three families constitute 20 people not including grandkids who have come along. You cannot unring a bell so be careful about what you say and whom you say it to.
I have spoken with my (awesome) bishop about many of these (and other) things at length. He strongly dislikes the gossip and judgments that are passed without full knowledge of the situation. He has been good enough to take time and let me sort through some of these things.
I guess the bottom line is that I am very much a free thinker and I tend to really look at things before I accept them. I don't accept things just because it has been drilled into me since I started primary. I DO have to know the why's of many things. Some things I can take at face (or faith) value but some I cannot. I suppose it would be easier to have the testimony that I inherited from my parents but I would rather have my own. I question a great deal and use common sense where I feel is necessary even when it comes to things handed down in General Conference. I could never live in Utah. Maybe everyone should look up J. Golden Kimball...he was known as the swearing prophet. I could not possibly be more controversial than him!
I go against the grain and that tends to rub people the wrong way. I suppose that is why my best friends (with the exception of one) tend to be non-members. I think they understand what I go through on a daily basis and they are the ones calling to ask what they can do to help. I don't feel that I have to gloss over how crappy my day really was with them. I can be angry with God that Noah has not one but two genetic disorders and no amount of praying or priesthood blessings are going to make him better. If I said that to anyone at church (with the exception of my bishop) I think their jaw would hit the floor but sorry it is the truth.
I am not saying that I can't stand anyone I go to church with. There are some who I greatly admire but do not hang out with because of geography, schedules, etc. There are amazing people in my church who I have learned a great deal from. Many may not even know it and I should be better at letting others know. Have I mentioned that my bishop rocks?
On a happier note. Reece's grades are way up, Connor is doing great in school, Parker is in the top reading and math group in his class and Scott is rocking work.
Oh the weather!!! It has been absolutely gorgeous!!! It is so nice to throw open the windows the windows and air the winter out of the house. Suddenly you see people you haven't seen forever out walking or playing with the kids. The other day we had seven kids out front and at least that many in back.
We are going to try and sell the house in an effort to find some acreage. Apparently we are in KY for the long haul but we love it here. It is a great place for families and kids. The people are very friendly so here we are.
Well I am off to fix dinner and start the weekend!
I tend to say what I think and I am not a sheep who will follow what someone says without figuring out how it fits into my life. I cannot stand people who judge others because they are not doing what has been stated over the pulpit. What most people don't stop to think about is that sometimes that is impossible. Example: Way back when President Benson urged mothers to not work and come home to their children. My institute teachers mother went back to work right when this was said in General Conference. Many people judged her and talked negatively about this decision. What they were not aware of is that her husband was unable to work because of health issues despite looking fine...he wasn't.
Blanket statements drive me nuts. When I hear in classes that you MUST sustain the local leaders it angers me. I know of many instances where certain people could not do this. Here are several examples: In my stake there was a bishop who molested many boys and was later arrested for solicitation of a minor (boy). Another bishop embezzled millions of dollars from the tithing fund and a dear, dear friend of mine was molested by her father (as was her sister) and this person was not only in the bishopric but also served as a veil worker in the temple.
So when I am TOLD that I MUST sustain leaders I balk at that. I DO sustain my local leaders because I believe they are good people and my bishop is amazing. But those who judge before they know details are so wrong. Maybe they should start handing out copies of the bishops handbook. Gossiping is right below adultery because it can absolutely destroy a family and/or their faith in the church. Another example: When I was 15 my mother decided she was done with our ward. For years it had been the most gossipy ward but now it had focused the gossip on my family. Horrid (and untrue) things were said about my father, brother and other various members of my family. To this day I am the only person who has come back to church. From that same ward I had two friends whose families went through the same thing and no members from either family have ever gone back. I know there are more but since I have not attended that ward for 20 years I only know of those. Just those three families constitute 20 people not including grandkids who have come along. You cannot unring a bell so be careful about what you say and whom you say it to.
I have spoken with my (awesome) bishop about many of these (and other) things at length. He strongly dislikes the gossip and judgments that are passed without full knowledge of the situation. He has been good enough to take time and let me sort through some of these things.
I guess the bottom line is that I am very much a free thinker and I tend to really look at things before I accept them. I don't accept things just because it has been drilled into me since I started primary. I DO have to know the why's of many things. Some things I can take at face (or faith) value but some I cannot. I suppose it would be easier to have the testimony that I inherited from my parents but I would rather have my own. I question a great deal and use common sense where I feel is necessary even when it comes to things handed down in General Conference. I could never live in Utah. Maybe everyone should look up J. Golden Kimball...he was known as the swearing prophet. I could not possibly be more controversial than him!
I go against the grain and that tends to rub people the wrong way. I suppose that is why my best friends (with the exception of one) tend to be non-members. I think they understand what I go through on a daily basis and they are the ones calling to ask what they can do to help. I don't feel that I have to gloss over how crappy my day really was with them. I can be angry with God that Noah has not one but two genetic disorders and no amount of praying or priesthood blessings are going to make him better. If I said that to anyone at church (with the exception of my bishop) I think their jaw would hit the floor but sorry it is the truth.
I am not saying that I can't stand anyone I go to church with. There are some who I greatly admire but do not hang out with because of geography, schedules, etc. There are amazing people in my church who I have learned a great deal from. Many may not even know it and I should be better at letting others know. Have I mentioned that my bishop rocks?
On a happier note. Reece's grades are way up, Connor is doing great in school, Parker is in the top reading and math group in his class and Scott is rocking work.
Oh the weather!!! It has been absolutely gorgeous!!! It is so nice to throw open the windows the windows and air the winter out of the house. Suddenly you see people you haven't seen forever out walking or playing with the kids. The other day we had seven kids out front and at least that many in back.
We are going to try and sell the house in an effort to find some acreage. Apparently we are in KY for the long haul but we love it here. It is a great place for families and kids. The people are very friendly so here we are.
Well I am off to fix dinner and start the weekend!
Monday, March 9, 2009
Not a professional blogger.
So I haven't posted in 5 months and I still have no pictures up. I am not real good at this.
I have become a Facebook addict lately. It is funny to have people send you a friend request that you have not heard from in years and possibly decades. There are some people from your past that you had somewhat hoped you would never hear from again. Luckily you can just ignore them.
The kids are all doing pretty well. Parker actually got into a fight at school because another child was teasing him. I am proud that he defended himself. I guess the other kid had not heard that he had older brothers that taught him how to throw a punch. There was blood (not Parker's) but he didn't get into trouble because he was provoked. The problem was that the child he was swinging at ducked and the little boy behind him caught the punch in the cheek. Luckily he knew it was an accident and his mom was VERY understanding. Such is life with boys.
Noah just went through another round of genetic and neurological testing. It is always fun to see your child knocked unconscious (not really) with IV's coming out of his arm. His geneticist and neurologist thought that there was something else going on with him because he was almost 4 (now he is) and still not speaking. Despite having an diagnosis of neurofibromatosis type 1 it is so mild that it should not affect him at all. He shows no signs other than a few spots on the skin. His geneticist calls him the mystery child. Anyway they did an MRI and some very sensitive blood tests. Luckily there was nothing awry on the MRI but something came up on the blood work. We all have 23 pairs of chromosomes. Females have "XX" chromosomes while boys have "XY". With Noah one pair of chromosomes is "XXY". Only one pair not all 23. If it were all 23 pair it would be something called Klinefelter syndrome but since it is only one pair they are calling it "diagnosis unknown". Great.
When your child gets a dx (abbreviation for diagnosis to those of you who have perfectly healthy children) it really sucks....I have been through it twice before this. But you run to your computer and find out as much as you can about it. When they cannot even tell you what it is or give you a name what are you supposed to do? Apparently whatever this is on his DNA is keeping him delayed and I cannot even get a prognosis or an educated guess about what the future holds. How do you google "unknown"?
Because there is a chance that I passed it to him (boys get their "X" chromosome from their mothers) I went and had my blood drawn to see if I carry this. Even though it is something that I could have done nothing about I will be devastated if I find out that it originated from me.
Luckily the lab is doing the testing for free. The last round was over $14,000---thank goodness for insurance. Apparently there is a dr who wants to write a paper about this "unknown" genetic disorder so they are not charging us. We should know more in a month or so.
We are putting the house up for sale! Yes the time has come to find more land for the boys. We are making the house look like we don't have four active boys and a big dog. It makes me laugh that we stage the house to look so much nicer for strangers than we do our family. This includes new curtains, paint, ceramic tiling (so not looking forward to that) and even a fireplace (thank you Craigslist). We are so grateful for Ikea and their inexpensive home decor. We hope to have it up for sale in about 3-4 weeks.
We are trying to decide on land but it is somewhat pointless because in this economy we will not buy anything until we sell the house we are in. Double mortgage payments are not fun. Been there, did that for TWO LONG YEARS.
Scott is doing well at work. He has come up with a new program that could net his company over $250,000,000. Yes that is $250 million. That would be job security for a long, long time. In these times that is a wonderful thing and we feel blessed daily by his continued employment.
At the beginning of December Reece began telling us about a new friend in his class. His name was Jack and he had just moved from England. At the same time a friend in the neighborhood was selling her house due to a divorce. One day we were driving home and Reece yelled "Hey that is Jack at Beth's house!". Well my friend had sold her home to Jack's family. A few days later we invited them over for Christmas Eve and Christmas Day since we assumed they did not have family here. The family includes Nikki, Jason, Jack Ashley and Mitchell. They are wonderful and have become like family to us. They are from Northern England (Manchester area). Nikki is probably my best friend in Louisville and we are joined at the hip. We always joke that we should just buy some land and build houses next to each other. Jack says we should just connect them with a big garage. We don't even knock on each others doors, Jack calls me "mommy #2" and we are supposed to go with them to England next summer.
Sometimes you just know that people were put in your life for a reason. Nikki is one of the most wonderful, giving, caring people I have even known. She is almost selfless to a fault and would give you the shirt off her back. If you have a problem she is the first to ask what she can do to help and she really means it. I feel beyond blessed that she and her family have come into our lives.
On a compete tangent I have to write this so I will not forget. Parker comes up to me today and says "Mommy did you know that sneezing protects you from cavities, dragonflies and germs?". Where do kids come up with this stuff?
I am going to stumble downstairs and watch something mindless on TV. Daylight savings always throws me. Forgive any spelling and/or grammar faux pas. I am past tired.
I have become a Facebook addict lately. It is funny to have people send you a friend request that you have not heard from in years and possibly decades. There are some people from your past that you had somewhat hoped you would never hear from again. Luckily you can just ignore them.
The kids are all doing pretty well. Parker actually got into a fight at school because another child was teasing him. I am proud that he defended himself. I guess the other kid had not heard that he had older brothers that taught him how to throw a punch. There was blood (not Parker's) but he didn't get into trouble because he was provoked. The problem was that the child he was swinging at ducked and the little boy behind him caught the punch in the cheek. Luckily he knew it was an accident and his mom was VERY understanding. Such is life with boys.
Noah just went through another round of genetic and neurological testing. It is always fun to see your child knocked unconscious (not really) with IV's coming out of his arm. His geneticist and neurologist thought that there was something else going on with him because he was almost 4 (now he is) and still not speaking. Despite having an diagnosis of neurofibromatosis type 1 it is so mild that it should not affect him at all. He shows no signs other than a few spots on the skin. His geneticist calls him the mystery child. Anyway they did an MRI and some very sensitive blood tests. Luckily there was nothing awry on the MRI but something came up on the blood work. We all have 23 pairs of chromosomes. Females have "XX" chromosomes while boys have "XY". With Noah one pair of chromosomes is "XXY". Only one pair not all 23. If it were all 23 pair it would be something called Klinefelter syndrome but since it is only one pair they are calling it "diagnosis unknown". Great.
When your child gets a dx (abbreviation for diagnosis to those of you who have perfectly healthy children) it really sucks....I have been through it twice before this. But you run to your computer and find out as much as you can about it. When they cannot even tell you what it is or give you a name what are you supposed to do? Apparently whatever this is on his DNA is keeping him delayed and I cannot even get a prognosis or an educated guess about what the future holds. How do you google "unknown"?
Because there is a chance that I passed it to him (boys get their "X" chromosome from their mothers) I went and had my blood drawn to see if I carry this. Even though it is something that I could have done nothing about I will be devastated if I find out that it originated from me.
Luckily the lab is doing the testing for free. The last round was over $14,000---thank goodness for insurance. Apparently there is a dr who wants to write a paper about this "unknown" genetic disorder so they are not charging us. We should know more in a month or so.
We are putting the house up for sale! Yes the time has come to find more land for the boys. We are making the house look like we don't have four active boys and a big dog. It makes me laugh that we stage the house to look so much nicer for strangers than we do our family. This includes new curtains, paint, ceramic tiling (so not looking forward to that) and even a fireplace (thank you Craigslist). We are so grateful for Ikea and their inexpensive home decor. We hope to have it up for sale in about 3-4 weeks.
We are trying to decide on land but it is somewhat pointless because in this economy we will not buy anything until we sell the house we are in. Double mortgage payments are not fun. Been there, did that for TWO LONG YEARS.
Scott is doing well at work. He has come up with a new program that could net his company over $250,000,000. Yes that is $250 million. That would be job security for a long, long time. In these times that is a wonderful thing and we feel blessed daily by his continued employment.
At the beginning of December Reece began telling us about a new friend in his class. His name was Jack and he had just moved from England. At the same time a friend in the neighborhood was selling her house due to a divorce. One day we were driving home and Reece yelled "Hey that is Jack at Beth's house!". Well my friend had sold her home to Jack's family. A few days later we invited them over for Christmas Eve and Christmas Day since we assumed they did not have family here. The family includes Nikki, Jason, Jack Ashley and Mitchell. They are wonderful and have become like family to us. They are from Northern England (Manchester area). Nikki is probably my best friend in Louisville and we are joined at the hip. We always joke that we should just buy some land and build houses next to each other. Jack says we should just connect them with a big garage. We don't even knock on each others doors, Jack calls me "mommy #2" and we are supposed to go with them to England next summer.
Sometimes you just know that people were put in your life for a reason. Nikki is one of the most wonderful, giving, caring people I have even known. She is almost selfless to a fault and would give you the shirt off her back. If you have a problem she is the first to ask what she can do to help and she really means it. I feel beyond blessed that she and her family have come into our lives.
On a compete tangent I have to write this so I will not forget. Parker comes up to me today and says "Mommy did you know that sneezing protects you from cavities, dragonflies and germs?". Where do kids come up with this stuff?
I am going to stumble downstairs and watch something mindless on TV. Daylight savings always throws me. Forgive any spelling and/or grammar faux pas. I am past tired.
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