Needless to say you and I had a great time and you want to do the paddle boats again next visit! I will keep this short. Hard to believe we are in the middle of July already! I love you Noah!!
Mom
XOXOX
Saturday, July 20, 2013
Tuesday, July 16, 2013
Dear Noah.....visit with grandma C.....and puffy clouds...
Just a quick update. We had a nice visit with grandma C. on Sunday. SO MANY beautiful clouds on the drive home..they were gorgeous. Once back home..the sun was out but some clouds were all around us...lots of blue sky though..and I heard this sound and thought the wind had picked up. Here it was RAIN! It was pouring down rain and the SUN WAS SHINING the entire time it rained! There must have been a rain cloud over our house...never saw any around us but wow did it rain! We saw a rainbow over the neighbor's house across the street and you really were excited to see it rain when it was SUNNY outside as you really have not ever seen that before. I can probably count only on 1 hand the number of times I have seen this happen in my lifetime and I have never seen it rain so hard in the sunshine as it did on Sunday. Anyway...here are a couple of pics. I love ya!
Mom
XOXOXO
Mom
XOXOXO
Thursday, July 04, 2013
Dear Noah....you are growing up so fast...
This was before you got your hair cut. I think you look great with longer hair...and also the shorter hair. You are a cutie...and I love you very much.
MOM!
x0x0x0x
Friday, June 14, 2013
Wednesday, May 29, 2013
Dear Noah...wrapping it up....
Well...school is pretty much wrapped up for the year. You have a final in Algebra and Language Arts but otherwise you are done and have been. I think they will let you all do some extra credit if you want as well.
We have decided not to continue with Ohio Virtual Academy for your high school years. I think it was great for elementary and middle school but there are many changes in high school that are going to be huge problems for you.
The classes will no longer be self-paced. Even with an IEP....you may get behind or be totally stressed out and not really grasping everything you could at the pace they set in high school. You actually did 2 high school classes this year and it is completely different than middle school. In high school you will be required to attend class connects...you have 6 classes daily and most will have class connects. You will also still have all your regular classwork and assignments to do in addition to these because if these class connects are like the ones we have attended thus far....I am sorry to say it is more a waste of time as it goes very slow and usually covers things you have already covered yourself or with my help. SO...we end up spending time there when it could have been used elsewhere. The school is saying you will work on assignments due that day in the class connects and not have to spend any additional time on your own to do work, but we already know that is not ever usually the case. We had heard there were reports of kids spending a lot more than 6 hours per day on school work....you could potentially spend 6 hours per day in class connects alone if each class had a class connect each day.
The school advertises flexibility and working at your own pace. That is only true for elementary school and middle school. That was the biggest reason we chose OHVA...to be able to work at our own pace....(which was usually ahead anyway)....but avoid stress...take downtime if we wanted to or when you needed to...they provide the curriculum and materials in case I did not have time to plan things out...and you would get an accredited high school diploma. Now if you take off or have vacation....all the work and assignments pile up and you somehow have to magically catch back up in addition to doing the current assignments.
You work better in the afternoons than mornings....but many classes will begin in the mornings. Sure you could watch recorded links if they have been recorded.....but you would be doing school work till midnight. No longer would I be your teacher but instead you would have teachers and guidance counselors and all the same stuff you have in a regular brick and mortar school. I think some parents like that..but some like us do not really need all that and if I wanted you to have it that way..you would still be attending a regular brick and mortar public school.
No more block scheduling of courses either...so instead of picking when you want to do what course....it is assigned...every day...each class....everything with due dates...etc. Gone are the days you can do all English or Art or Math one day and Science the next or in any combination you want...like combining 2 classes of Art together into one day. No working ahead...etc.
You would obviously keep all your IEP accommodations but those have pretty much been trimmed down to the bare necessities and really only applied anymore to test taking as you do well academically....but OHVA is like many schools now....all gearing toward teaching for state mandated testing ONLY. SO much is being left out or lost because everything is done to prepare you all to only fill in bubbles....memorize things you will likely never use again in your lifetime...I could go on and on but I am not going to invest that much time or energy into it..at least not right now.
So come fall, if not before..we will branch back out into homeschooling again on our own. I have already notified OHVA about this...and we know what to do as we have homeschooled before. I can give you a diploma myself when you graduate as I keep track of all your courses and grades and you will even have a transcript. MANY employers and even colleges accept these and/or would only require you to test as anyone else beforehand to show what you already know. I am not worried about any of that now.
I have my work cut out for me as I need to work with you also this year on life skills...learning how to write well enough to fill out applications or paperwork....sign your name....keep a budget and pay bills...write checks...balance a checking account....do laundry and cleaning....cooking....things outside as well as inside..so many things. You will also pick some things you wish to learn about this next year ...we will have MANY MORE field trips and to be honest...we are both excited about the way we used to learn together in our homeschooling so I do think these next 4 years will be a lot of fun for you and me! SO MANY things continue to change regarding virtual online schools and homeschooling and public schools and state testing...etc.
So...lots of changes coming up for us again, but I know you will do well.
I love you Noah.
Mom
XOXOXO
We have decided not to continue with Ohio Virtual Academy for your high school years. I think it was great for elementary and middle school but there are many changes in high school that are going to be huge problems for you.
The classes will no longer be self-paced. Even with an IEP....you may get behind or be totally stressed out and not really grasping everything you could at the pace they set in high school. You actually did 2 high school classes this year and it is completely different than middle school. In high school you will be required to attend class connects...you have 6 classes daily and most will have class connects. You will also still have all your regular classwork and assignments to do in addition to these because if these class connects are like the ones we have attended thus far....I am sorry to say it is more a waste of time as it goes very slow and usually covers things you have already covered yourself or with my help. SO...we end up spending time there when it could have been used elsewhere. The school is saying you will work on assignments due that day in the class connects and not have to spend any additional time on your own to do work, but we already know that is not ever usually the case. We had heard there were reports of kids spending a lot more than 6 hours per day on school work....you could potentially spend 6 hours per day in class connects alone if each class had a class connect each day.
The school advertises flexibility and working at your own pace. That is only true for elementary school and middle school. That was the biggest reason we chose OHVA...to be able to work at our own pace....(which was usually ahead anyway)....but avoid stress...take downtime if we wanted to or when you needed to...they provide the curriculum and materials in case I did not have time to plan things out...and you would get an accredited high school diploma. Now if you take off or have vacation....all the work and assignments pile up and you somehow have to magically catch back up in addition to doing the current assignments.
You work better in the afternoons than mornings....but many classes will begin in the mornings. Sure you could watch recorded links if they have been recorded.....but you would be doing school work till midnight. No longer would I be your teacher but instead you would have teachers and guidance counselors and all the same stuff you have in a regular brick and mortar school. I think some parents like that..but some like us do not really need all that and if I wanted you to have it that way..you would still be attending a regular brick and mortar public school.
No more block scheduling of courses either...so instead of picking when you want to do what course....it is assigned...every day...each class....everything with due dates...etc. Gone are the days you can do all English or Art or Math one day and Science the next or in any combination you want...like combining 2 classes of Art together into one day. No working ahead...etc.
You would obviously keep all your IEP accommodations but those have pretty much been trimmed down to the bare necessities and really only applied anymore to test taking as you do well academically....but OHVA is like many schools now....all gearing toward teaching for state mandated testing ONLY. SO much is being left out or lost because everything is done to prepare you all to only fill in bubbles....memorize things you will likely never use again in your lifetime...I could go on and on but I am not going to invest that much time or energy into it..at least not right now.
So come fall, if not before..we will branch back out into homeschooling again on our own. I have already notified OHVA about this...and we know what to do as we have homeschooled before. I can give you a diploma myself when you graduate as I keep track of all your courses and grades and you will even have a transcript. MANY employers and even colleges accept these and/or would only require you to test as anyone else beforehand to show what you already know. I am not worried about any of that now.
I have my work cut out for me as I need to work with you also this year on life skills...learning how to write well enough to fill out applications or paperwork....sign your name....keep a budget and pay bills...write checks...balance a checking account....do laundry and cleaning....cooking....things outside as well as inside..so many things. You will also pick some things you wish to learn about this next year ...we will have MANY MORE field trips and to be honest...we are both excited about the way we used to learn together in our homeschooling so I do think these next 4 years will be a lot of fun for you and me! SO MANY things continue to change regarding virtual online schools and homeschooling and public schools and state testing...etc.
So...lots of changes coming up for us again, but I know you will do well.
I love you Noah.
Mom
XOXOXO
Friday, May 17, 2013
issues with Blogger
I will update once I get the bugs worked out. I have not been able to post pics now for over a month
Saturday, April 06, 2013
Dear Noah...trying to decide about your high school years....
and what to do ...whether to stick with online virtual school or go back to doing it on our own. You are currently enrolled and have been since about 4th grade in an online public charter school...and now are already almost complete with your 8th grade, as well as 2 high school courses during this year that you will also get credit for...Math and English.
The high school courses and curriculum change CONSIDERABLY, however, and a lot of the "flexibility factor" we need and loved about this particular online school is pretty much gone in high school. Needless to say we have a lot to think about and decisions to make.
Meanwhile you have really enjoyed your new laptop and meeting and making NEW friends from around the world who also enjoy playing similar games you do. You are using Skype to hook up with them and talk...and I have to say you have become quite the social butterfly....
Otherwise, winter seems about over and we are heading into spring. You plan on helping me mow this summer. I hope we can manage it okay.
I love you...cannot believe you are growing up so fast.
Mom
XOXOX
Saturday, January 26, 2013
Dear Noah....ongoing toiletry issues, voice cracking and no cures please...
Noah:
Even at 14 years of age you still have some toiletry issues...which I will not go into since you are now 14 years old...but suffice to say you have made great progress...and likely will always have some issues to deal with in this regard..but you definitely need to always remember to GO when you feel the urge to go! This would eliminate most if not all of your issues my little man!
You submerged headlong into puberty a few years ago...and your voice has been very deep for a long time now...but recently it has started to "crack" quite a bit...which you asked me last night if that was "normal." You were comforted knowing that yes, it is.
Last night you walked into my office and told me that some people were trying to come up with a "cure" for "autism" and you did not understand that....very loudly expressing to me (and perhaps to our neighbors) that you were NOT interested in any cure....and WHY did anyone want to CURE you or get rid of your autism...that you LIKED how you were. In your way of thinking...the only reason you could come up with for someone trying to find a "cure" to "change" you into becoming more like them was the same reason the teachers in the public schools always tried to "change" you to be "like everyone else"...to make their lives easier...so they would not have to put in the extra time or extend themselves a little out of their own comfort zone to just work with you as you are and accept you for who you are and just deal with it.
You informed me that many times just because someone has autism you are singled out and treated unfairly or given "crap" jobs. I think that is what you called it. Basically something less than anyone else would normally be offered....merely because you are different.
We talked about this for a while. I am so thankful you have learned to just EMBRACE who you ARE and not try to change to become what someone else thinks you need to become. I did tell you that many are discriminated against in the world, not just autistic people, but yes they are definitely included and have their own share of issues to deal with..but also overweight people, black people, some white people, Asians, Indians, disabled people..etc...and ALL usually merely because of ignorance and the fact that the person doing the discriminating is the one who is "uncomfortable" with those discriminated against persons being in their world. Such a slippery slope mankind has weaved here to try to determine someone else's value in the world by their own personal biases.
I did tell you there are some autistic people who have it really severe and usually combined with many other issues making their lives very challenging, and maybe some of them would like to change some things to be able to lessen those challenges or eliminate them altogether, but most every autistic person I have ever spoken with, usually feels as you do (if they are aware of their being and surroundings) and have no desire to change just to be in "my" world for example.
SO...stay strong my little man....go boldly as colorful and "different" as you can in expressing yourself and your desire to be accepted as you are, not letting anyone tell you ever that you are not good enough, strong enough, smart enough, "valuable" enough to just even be alive in this world...just as you are.
I love you Noah....just as you are...always have and always will.
Mom
XOXOXOX
Even at 14 years of age you still have some toiletry issues...which I will not go into since you are now 14 years old...but suffice to say you have made great progress...and likely will always have some issues to deal with in this regard..but you definitely need to always remember to GO when you feel the urge to go! This would eliminate most if not all of your issues my little man!
You submerged headlong into puberty a few years ago...and your voice has been very deep for a long time now...but recently it has started to "crack" quite a bit...which you asked me last night if that was "normal." You were comforted knowing that yes, it is.
Last night you walked into my office and told me that some people were trying to come up with a "cure" for "autism" and you did not understand that....very loudly expressing to me (and perhaps to our neighbors) that you were NOT interested in any cure....and WHY did anyone want to CURE you or get rid of your autism...that you LIKED how you were. In your way of thinking...the only reason you could come up with for someone trying to find a "cure" to "change" you into becoming more like them was the same reason the teachers in the public schools always tried to "change" you to be "like everyone else"...to make their lives easier...so they would not have to put in the extra time or extend themselves a little out of their own comfort zone to just work with you as you are and accept you for who you are and just deal with it.
You informed me that many times just because someone has autism you are singled out and treated unfairly or given "crap" jobs. I think that is what you called it. Basically something less than anyone else would normally be offered....merely because you are different.
We talked about this for a while. I am so thankful you have learned to just EMBRACE who you ARE and not try to change to become what someone else thinks you need to become. I did tell you that many are discriminated against in the world, not just autistic people, but yes they are definitely included and have their own share of issues to deal with..but also overweight people, black people, some white people, Asians, Indians, disabled people..etc...and ALL usually merely because of ignorance and the fact that the person doing the discriminating is the one who is "uncomfortable" with those discriminated against persons being in their world. Such a slippery slope mankind has weaved here to try to determine someone else's value in the world by their own personal biases.
I did tell you there are some autistic people who have it really severe and usually combined with many other issues making their lives very challenging, and maybe some of them would like to change some things to be able to lessen those challenges or eliminate them altogether, but most every autistic person I have ever spoken with, usually feels as you do (if they are aware of their being and surroundings) and have no desire to change just to be in "my" world for example.
SO...stay strong my little man....go boldly as colorful and "different" as you can in expressing yourself and your desire to be accepted as you are, not letting anyone tell you ever that you are not good enough, strong enough, smart enough, "valuable" enough to just even be alive in this world...just as you are.
I love you Noah....just as you are...always have and always will.
Mom
XOXOXOX
Sunday, December 30, 2012
Dear Noah....your Christmas surprise and 14th birthday
Noah...well...you were very fortunate to have Secret Santas make your wish of a laptop come true for you this Christmas. I think that has been the biggest highlight for you...and you got some nice gifts and many gift cards to Pizza Hut...and a Mastercard...and lots of extra cash for your birthday, which you want to open a bank account and put in the bank. All in all we were very blessed this Christmas. We were surprised on Christmas Eve by other secret santas delivering presents and a huge rubber tote filled with foods and goodies and gift cards. I was fortunate to also receive gift cards to Krogers...we have been truly blessed and provided for this year. I am so thankful and thankful for you too Noah. I love you...very much...Mom XOXOXOX
Thursday, December 20, 2012
Dear Noah....getting ready for the holidays...
Well you our officially out on school break...which means I too am out on school break. That is nice...we will have a little more free time.
I had no idea it had been nearly 2 months since I posted last. I remember a time I posted nearly every day...I think because back then we had more things to deal with than we do now. Now that you are older and homeschooled life is a lot easier thank goodness.
Raining hard today...and windy. Supposed to turn to snow and be more wintery later tonight and into tomorrow. Then warm up again.
Last night we went rail fanning...but only saw 1 train in 3 hours. We also drove through a park in Indiana to see 3,000,000 lights on display! It sure was pretty.
Otherwise you are very anxious for Christmas. I know you are hoping beyond hopes for a laptop. We will see what the day brings...but I have prepared you for NOT receiving anything like that. I will be late in hanging a stocking for you this year too since money has been tight. You have handled this all pretty well..but it makes me feel badly that financially we are in the mess we are in. I am doing all I can to try to work that all out...even went and applied for benefits including FOOD stamps/card...just to see what we might qualify for if anything..to help us over the hump. We will see.
Anyway...I love you so much Noah. SO VERY MUCH...you have brought so much light, happiness and joy into my life. I loved spending time with you yesterday my little man. Your 14th birthday is coming up next week too. Cannot believe you will be turning 14. Time goes by so quickly.
XOXOXO
I had no idea it had been nearly 2 months since I posted last. I remember a time I posted nearly every day...I think because back then we had more things to deal with than we do now. Now that you are older and homeschooled life is a lot easier thank goodness.
Raining hard today...and windy. Supposed to turn to snow and be more wintery later tonight and into tomorrow. Then warm up again.
Last night we went rail fanning...but only saw 1 train in 3 hours. We also drove through a park in Indiana to see 3,000,000 lights on display! It sure was pretty.
Otherwise you are very anxious for Christmas. I know you are hoping beyond hopes for a laptop. We will see what the day brings...but I have prepared you for NOT receiving anything like that. I will be late in hanging a stocking for you this year too since money has been tight. You have handled this all pretty well..but it makes me feel badly that financially we are in the mess we are in. I am doing all I can to try to work that all out...even went and applied for benefits including FOOD stamps/card...just to see what we might qualify for if anything..to help us over the hump. We will see.
Anyway...I love you so much Noah. SO VERY MUCH...you have brought so much light, happiness and joy into my life. I loved spending time with you yesterday my little man. Your 14th birthday is coming up next week too. Cannot believe you will be turning 14. Time goes by so quickly.
I love you to the moon and back again Noah...again and again and again..to infinity and beyond..forever I will.
MomXOXOXO
Monday, October 22, 2012
Brumbaugh's Fruit Farm...and the pumpkin patch
Every year we try to make it out to Brumbaugh's Fruit Farm to look around if nothing else. We stopped by one day to pick up some apples and apple fritters before going to grandma C.'s house...and you wanted your yearly pic taken in the picture posing pumpkin patch area..so we stopped and I snapped a few. So, my little man, here you are 2012....compared to prior years you can see you are growing up so fast!
I love ya!
Mom
XOXOXOX
Monday, October 08, 2012
Dear Noah..artwork....
getting you to do any artwork these days is like pulling teeth. You fight me the whole way....never want to do it...I think because you do not feel like you CAN do anything "good enough" or like everyone else your age might do things. I try to tell you to just LET GO and CREATE..to do ANYTHING....there are no limits in artwork and being creative. You finally AGREED to come out to the table and paint...
We had been talking about ABSTRACT art in art class so you decided to just let loose and do something more abstract....
this is your creation. I love the colors and movement in the painting and you seem pretty proud of yourself which I am happy about! Hopefully this will build some confidence in you!
I love you!
mom
XOXOX
We had been talking about ABSTRACT art in art class so you decided to just let loose and do something more abstract....
this is your creation. I love the colors and movement in the painting and you seem pretty proud of yourself which I am happy about! Hopefully this will build some confidence in you!
I love you!
mom
XOXOX
Dear Noah....follow-up cardiology visit....
My little man is growing up.....getting tall and lanky....
He still loves to sit in this position for most everything. He reads like this...will eat at the table like this....do a lot of things like this. (this is the same position he used to use on the toilet which took years to break him of....lol)
He still loves to sit in this position for most everything. He reads like this...will eat at the table like this....do a lot of things like this. (this is the same position he used to use on the toilet which took years to break him of....lol)
Thursday, October 04, 2012
Dear Noah....red left turn arrow...
We had a good weekend. On Sunday we drove to your aunt Angela's house to celebrate her husband's birthday. On the way we saw one of these...a left turn arrow that had turned RED. Normally we only see a solid red circle....not the left turn arrow that is red.
Anyway....you got very excited and looked over at me and said, "I think I am kind of dreamy right now, cause it has been a long time since I have seen one of those!"
I chuckled and asked you to repeat what you said...because I was not sure I heard you correctly. Yes...you said "dreamy." You were swooning.
I said that was cute...and you said, "Well it is an emotion!"
You would be correct and it sums up PERFECTLY exactly how you were feeling.
Needless to say, that was probably one of the highlights of your day...possibly even year...lol.
Love you as always,
Mom
XOXOXOX
Anyway....you got very excited and looked over at me and said, "I think I am kind of dreamy right now, cause it has been a long time since I have seen one of those!"
I chuckled and asked you to repeat what you said...because I was not sure I heard you correctly. Yes...you said "dreamy." You were swooning.
I said that was cute...and you said, "Well it is an emotion!"
You would be correct and it sums up PERFECTLY exactly how you were feeling.
Needless to say, that was probably one of the highlights of your day...possibly even year...lol.
Love you as always,
Mom
XOXOXOX
Sunday, September 23, 2012
Dear Noah.....getting checked for Marfan's syndrome...
Well...since you have quite a few of the characteristics of Marfan syndrome on top of everything else..we had to go see a specialist at the Children's Hospital in Cincinnati last week.
Marfan syndrome is an inherited disorder that affects connective tissue, which supports and anchors your organs and other structures in your body. Because connective tissue is such an integral part of your body, Marfan syndrome may disrupt development and function in several sites. Most common are your heart, eyes, blood vessels and skeleton.
People with Marfan syndrome are usually tall and thin with disproportionately long arms, legs, fingers and toes. Marfan syndrome is caused by a dominant gene, which means one of your parents also has the gene and passed it to you.
Marfan syndrome features may include:
The most dangerous complications of Marfan syndrome involve the heart and blood vessels. Faulty connective tissue can weaken the aorta, the large artery that curves over your heart and supplies blood to the body, then splits in your pelvis to supply blood to your legs.
Eye complications may include:
Marfan syndrome can cause breathing difficulties, either from defective connective tissue or from chest wall abnormalities. Severe spinal curvature or a concave chest, for instance, may restrict your breathing and cause you to feel short of breath during mild or moderate activity. People with Marfan syndrome are also at higher risk of:
She feels you probably do have it...but again, we are already doing everything we should in regards to it. It is mostly preventative things.
The main thing to be concerned with for you would be any change in any characteristics or symptoms you already have..mainly those regarding the heart. Obviously we all want to avoid any surgery for as long as possible if not for your entire lifetime...and we want to avoid an aortic aneurysm or dissection.
So we will need to continue to monitor your heart with the cardiology visits we already do...and repeat echocardiograms to monitor your heart and valves for changes. We already have your eyes checked yearly and you get a physical yearly. We are taking care of your flat feet. We are watching for any changes in the spine or lungs. You are avoiding contact sports and extreme physical exertion...so we are already doing the things most docs would recommend anyway. We may see a geneticist one day...and maybe one day you will have some testing done...but it does not change the way we would treat you anyway..so for now we will avoid that as most likely our insurance may not cover that cost as those tests are very expensive...and/or you may not be able to handle the blood work very well.
So we keep plugging along. You have a cardiology appointment and repeat echo coming up in October. Hopefully all will be the same and nothing will need to be changed.
Meanwhile you are growing fast. As you can see by these pics..you are now longer and taller than these pediatric examining tables at Children's Hospital (though I know they probably have an extension there underneath your leg area).
Homeschool is going well. You are doing so much better as far as getting your butt in here and DOING school than in the past..and you are doing well thus far with the 2 high school courses you are taking as an 8th grader..in math and English.
So, now we are heading into fall. I wonder where the year has gone. I look at you and wonder the same thing. You are growing up so very fast...and time keeps on tick tocking away...for you and me both! Makes me a little sad....but also a little excited to see what the future holds for you as well as myself. I still cannot imagine one day you being out on your own and me being here in my home all by myself. You have been with me since you were born. So that will be a big adjustment...
but let's not rush things...lol
I love you Noah...so much more than you will ever know.
Mom
XOXOX
Marfan syndrome is an inherited disorder that affects connective tissue, which supports and anchors your organs and other structures in your body. Because connective tissue is such an integral part of your body, Marfan syndrome may disrupt development and function in several sites. Most common are your heart, eyes, blood vessels and skeleton.
People with Marfan syndrome are usually tall and thin with disproportionately long arms, legs, fingers and toes. Marfan syndrome is caused by a dominant gene, which means one of your parents also has the gene and passed it to you.
Marfan syndrome features may include:
- Tall and slender build (yes ....check positive for this for you)
- Disproportionately long arms, legs, fingers and toes (check..your arm span is longer than you are tall)
- A breastbone that protrudes outward or dips inward (negative)
- A high, arched palate and crowded teeth (not that high arched)
- Heart murmurs (yes along with bicuspid aorta, aortic stenosis and some leaking)
- Extreme nearsightedness (yes)
- A curved spine (no)
- Flat feet (yes..extreme)
- Straie (yes..and in strange spots on your body and you are skinny)
- Hyper-reflexic joints (yes...you always have been super flexible...beyond the normal range of joints)
The most dangerous complications of Marfan syndrome involve the heart and blood vessels. Faulty connective tissue can weaken the aorta, the large artery that curves over your heart and supplies blood to the body, then splits in your pelvis to supply blood to your legs.
- Aortic aneurysm. The pressure of blood leaving your heart can cause the wall of your artery to bulge out, like a weak spot in a tire. In people who have Marfan syndrome, this is most likely to happen at the aortic root — where the artery leaves your heart. The bulge can spread along the entire length of the aorta, into your abdomen. If it ruptures or tears, you may die.
- Aortic dissection. The wall of the aorta is made up of thin layers. Dissection occurs when a small tear in the innermost layer of the aorta's wall allows blood to squeeze in between the inner and outer layers of the wall. This can cause severe pain in the chest or back. An aortic dissection weakens the vessel's structure and often results in a rupture, which can be fatal.
- Valve malformations. People who have Marfan syndrome are also more likely to have problems with their heart valves, which may be malformed or overly elastic. When heart valves don't work properly, your heart muscle often has to work harder to compensate. This can eventually lead to heart failure.
Eye complications may include:
- Dislocation of the lens in one or both eyes because of weakness in the ligaments that hold the lens in place.
- Glaucoma, a condition in which abnormally high pressure within your eyes damages the optic nerve. Symptoms may range from sensitivity to light and glare to severe eye pain, blurred vision and blindness.
- A cataract, which clouds the eye's normally clear lens.
- Detachment or tear in the retina, the light-sensitive tissue that lines the back wall of your eye.
Marfan syndrome can cause breathing difficulties, either from defective connective tissue or from chest wall abnormalities. Severe spinal curvature or a concave chest, for instance, may restrict your breathing and cause you to feel short of breath during mild or moderate activity. People with Marfan syndrome are also at higher risk of:
- Emphysema
- Chronic obstructive pulmonary disease
- Collapsed lung
- Sleep apnea
She feels you probably do have it...but again, we are already doing everything we should in regards to it. It is mostly preventative things.
The main thing to be concerned with for you would be any change in any characteristics or symptoms you already have..mainly those regarding the heart. Obviously we all want to avoid any surgery for as long as possible if not for your entire lifetime...and we want to avoid an aortic aneurysm or dissection.
So we will need to continue to monitor your heart with the cardiology visits we already do...and repeat echocardiograms to monitor your heart and valves for changes. We already have your eyes checked yearly and you get a physical yearly. We are taking care of your flat feet. We are watching for any changes in the spine or lungs. You are avoiding contact sports and extreme physical exertion...so we are already doing the things most docs would recommend anyway. We may see a geneticist one day...and maybe one day you will have some testing done...but it does not change the way we would treat you anyway..so for now we will avoid that as most likely our insurance may not cover that cost as those tests are very expensive...and/or you may not be able to handle the blood work very well.
So we keep plugging along. You have a cardiology appointment and repeat echo coming up in October. Hopefully all will be the same and nothing will need to be changed.
Meanwhile you are growing fast. As you can see by these pics..you are now longer and taller than these pediatric examining tables at Children's Hospital (though I know they probably have an extension there underneath your leg area).
Homeschool is going well. You are doing so much better as far as getting your butt in here and DOING school than in the past..and you are doing well thus far with the 2 high school courses you are taking as an 8th grader..in math and English.
So, now we are heading into fall. I wonder where the year has gone. I look at you and wonder the same thing. You are growing up so very fast...and time keeps on tick tocking away...for you and me both! Makes me a little sad....but also a little excited to see what the future holds for you as well as myself. I still cannot imagine one day you being out on your own and me being here in my home all by myself. You have been with me since you were born. So that will be a big adjustment...
but let's not rush things...lol
I love you Noah...so much more than you will ever know.
Mom
XOXOX
Monday, August 20, 2012
Dear Noah....you are growing up fast....but....
I love the fact that you still will reach out for my hand when we cross a parking lot...or wrap your arm around my neck or waist to walk in....
I love you...
Mom
XOXOXO
I love you...
Mom
XOXOXO
Friday, August 10, 2012
PLEASE go sign petition to BAN shock treatments (TORTURE) against autistics and special needs children...
SIGN PETITION HERE
***WARNING...on the above link to the petition you will be able to view the video of the poor 18-year-old autistic young man who was given this shock treatment over 31 times in 7 hours. There were reports of another 18-year-old autistic child who received 88 shock treatments in 3 hours. It is VERY difficult to watch even a snippet of this video. You can hear the poor boy screaming HELP ME or STOP IT....and he is strapped face down to a table...spread eagled..and what tops it off and makes it deplorable...is the fact that you can hear/see staff in the background LAUGHING.
This occurs at Judge Rotenberg Center (JRC) — a special needs school in Canton, Massachusetts.
I cannot tell you how this ties my stomach up in knots...how FURIOUS it makes me...how I am sickened and saddened that anyone anywhere has deemed this so-called inhumane torture "therapy" and gotten away with performing it over and over again! Of course it is usually performed on those who CANNOT speak for themselves...have little ability to communicate....who have no idea of the reason they are even being punished...or that they are even being PUNISHED at all. They usually do not know what they did wrong..or why it is considered "wrong" to begin with. Must we really try to get all the square pegs to fit into society's round holes?
In this particular case...the boy, Andre McCollins, would not remove his coat. Let's read that again. He would NOT remove his coat. SO...that behavior is deemed UNwanted and warrants SHOCKING??? As mom to an autistic child who was very NONverbal starting out his young life..I am totally aware that any PUNISHMENT for something like this just does not work. WHY? Because they do not know they are doing anything wrong. So what if this poor child would not remove his coat? Often, Noah would not want to remove his in school...or he would get extremely upset if he got water on his shirt..dirt on his pants..etc..and have a "meltdown" and disrupt the class. THOSE are not reasons to PUNISH these kids. They are reacting in the only way they know how to COPE with all their sensory overload. Wearing the coat probably helped this child remain CALM and more focused...perhaps safe. He was sitting still in the classroom and facing forward. WHY make an issue at all about the coat? Because he was not like everyone else? WHERE in society is it deemed we all HAVE to remove our coats when inside to begin with? HOW would that ever prepare him for behaving BETTER in any social situation? I don't understand this.
So this poor kid gets dragged from his chair..he is screaming and crying already...and they strap him to that table spread eagled..place a helmet on his head and begin administering electrical shocks to his body....stronger than taser strength..over 31 times. He has suffered some permanent brain damage now because of this. The child's mother has submitted petitions to try to get this treatment (and I use that word loosely)...BANNED but it continues to this day to other, special needs children and young adults at this particular school..or so-called school. MANY have climbed on the bandwagon saying the mother had to SIGN off and give PERMISSION for her child to receive this treatment..but often the schools will not go into detail about what their "treatments" are and never display them to the parent. SELDOM.
This child has since been treated at a children's hospital and is now in a mental hospital. I am not sure that is any better. You see a picture of him on one website where he looks so innocent and smiling....it is hard to believe he had such bad "behavior"...but I know it is possible. BUT I also know that this form of "behavioral therapy" is just WRONG and will usually never work on an autistic child...and it will usually be met with the complete OPPOSITE reaction of the one you wanted to begin with.
I am stunned about this. I am in a state of shock myself that this is being allowed to continue..even now with the UN doing an investigation. It is scary. Think about it. What could this lead to in the future for any special needs people? WHAT else goes on that we do not know about...sometimes our kids cannot even tell us.
I know when Noah was not able to talk much...and we would get called to school because he did "something wrong" ...he could never tell us his story or what really happened according to him. We only heard the school's side and of course they expected us to believe what they said was true. I found out quickly how often schools lie about things to cover their own backsides. As Noah got older and able to communicate better...I also became more involved and asked more and more questions. We were asked at one point to GIVE PERMISSION at his school in Colorado to allow staff to "RESTRAIN" him if he "acted out." First I asked for them to define "acting out." They said it would be if he put himself or others in danger such as kicking, biting, running away, etc. I told them that HOLDING Noah down would be met with the exact opposite behavior than the one they wanted. After all, if someone tries to hold YOU down..what do YOU do? I fight against it. I fight to be free. I cry and scream for help. I would kick and bite and try running away and do even MORE of those same possible behaviors they did not want to begin with!
They did demonstrate the RESTRAINING technique since I asked for it to be demonstrated...a type of sitting down BODY hug basically...a little more than a hug..where they basically have your child on the floor between their legs and they wrap their arms and legs super tightly around your child's body...and if we are not there to witness it...HOW do we know what really happens?
We withdrew Noah from school the next day. I did not want to sign that paper and have him end up in who knows what type of situation.
Now I know not all autistic and special needs children are the same..and many have extreme defiant behaviors and more...but I still feel very strongly that SHOCKING them is NOT the way to HELP them. It would seem to me to only create more anxiousness....fear....withdrawal...silencing of that tiny voice inside that is wishing so much it could speak and just have someone else "listen."
So I am asking you to BE THEIR VOICE...SIGN THE PETITION...HELP BAN this type of so-called therapy from ever being used against another special needs child in the future.
Thanks.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
***WARNING...on the above link to the petition you will be able to view the video of the poor 18-year-old autistic young man who was given this shock treatment over 31 times in 7 hours. There were reports of another 18-year-old autistic child who received 88 shock treatments in 3 hours. It is VERY difficult to watch even a snippet of this video. You can hear the poor boy screaming HELP ME or STOP IT....and he is strapped face down to a table...spread eagled..and what tops it off and makes it deplorable...is the fact that you can hear/see staff in the background LAUGHING.
This occurs at Judge Rotenberg Center (JRC) — a special needs school in Canton, Massachusetts.
I cannot tell you how this ties my stomach up in knots...how FURIOUS it makes me...how I am sickened and saddened that anyone anywhere has deemed this so-called inhumane torture "therapy" and gotten away with performing it over and over again! Of course it is usually performed on those who CANNOT speak for themselves...have little ability to communicate....who have no idea of the reason they are even being punished...or that they are even being PUNISHED at all. They usually do not know what they did wrong..or why it is considered "wrong" to begin with. Must we really try to get all the square pegs to fit into society's round holes?
In this particular case...the boy, Andre McCollins, would not remove his coat. Let's read that again. He would NOT remove his coat. SO...that behavior is deemed UNwanted and warrants SHOCKING??? As mom to an autistic child who was very NONverbal starting out his young life..I am totally aware that any PUNISHMENT for something like this just does not work. WHY? Because they do not know they are doing anything wrong. So what if this poor child would not remove his coat? Often, Noah would not want to remove his in school...or he would get extremely upset if he got water on his shirt..dirt on his pants..etc..and have a "meltdown" and disrupt the class. THOSE are not reasons to PUNISH these kids. They are reacting in the only way they know how to COPE with all their sensory overload. Wearing the coat probably helped this child remain CALM and more focused...perhaps safe. He was sitting still in the classroom and facing forward. WHY make an issue at all about the coat? Because he was not like everyone else? WHERE in society is it deemed we all HAVE to remove our coats when inside to begin with? HOW would that ever prepare him for behaving BETTER in any social situation? I don't understand this.
So this poor kid gets dragged from his chair..he is screaming and crying already...and they strap him to that table spread eagled..place a helmet on his head and begin administering electrical shocks to his body....stronger than taser strength..over 31 times. He has suffered some permanent brain damage now because of this. The child's mother has submitted petitions to try to get this treatment (and I use that word loosely)...BANNED but it continues to this day to other, special needs children and young adults at this particular school..or so-called school. MANY have climbed on the bandwagon saying the mother had to SIGN off and give PERMISSION for her child to receive this treatment..but often the schools will not go into detail about what their "treatments" are and never display them to the parent. SELDOM.
This child has since been treated at a children's hospital and is now in a mental hospital. I am not sure that is any better. You see a picture of him on one website where he looks so innocent and smiling....it is hard to believe he had such bad "behavior"...but I know it is possible. BUT I also know that this form of "behavioral therapy" is just WRONG and will usually never work on an autistic child...and it will usually be met with the complete OPPOSITE reaction of the one you wanted to begin with.
I am stunned about this. I am in a state of shock myself that this is being allowed to continue..even now with the UN doing an investigation. It is scary. Think about it. What could this lead to in the future for any special needs people? WHAT else goes on that we do not know about...sometimes our kids cannot even tell us.
I know when Noah was not able to talk much...and we would get called to school because he did "something wrong" ...he could never tell us his story or what really happened according to him. We only heard the school's side and of course they expected us to believe what they said was true. I found out quickly how often schools lie about things to cover their own backsides. As Noah got older and able to communicate better...I also became more involved and asked more and more questions. We were asked at one point to GIVE PERMISSION at his school in Colorado to allow staff to "RESTRAIN" him if he "acted out." First I asked for them to define "acting out." They said it would be if he put himself or others in danger such as kicking, biting, running away, etc. I told them that HOLDING Noah down would be met with the exact opposite behavior than the one they wanted. After all, if someone tries to hold YOU down..what do YOU do? I fight against it. I fight to be free. I cry and scream for help. I would kick and bite and try running away and do even MORE of those same possible behaviors they did not want to begin with!
They did demonstrate the RESTRAINING technique since I asked for it to be demonstrated...a type of sitting down BODY hug basically...a little more than a hug..where they basically have your child on the floor between their legs and they wrap their arms and legs super tightly around your child's body...and if we are not there to witness it...HOW do we know what really happens?
We withdrew Noah from school the next day. I did not want to sign that paper and have him end up in who knows what type of situation.
Now I know not all autistic and special needs children are the same..and many have extreme defiant behaviors and more...but I still feel very strongly that SHOCKING them is NOT the way to HELP them. It would seem to me to only create more anxiousness....fear....withdrawal...silencing of that tiny voice inside that is wishing so much it could speak and just have someone else "listen."
So I am asking you to BE THEIR VOICE...SIGN THE PETITION...HELP BAN this type of so-called therapy from ever being used against another special needs child in the future.
Thanks.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tuesday, July 24, 2012
Dear Noah...our local Pizza Hut restaurant is closing and they are opening a Carry-Out Pizza Hut down the street
You now LOVE Pizza Hut pizza. We have a very old sit-down Pizza Hut restaurant still here in town...one of the few remaining around. We do enjoy going to sit inside the restaurant to eat pizza from time to time..but after over 50 years...I think...around that..they are going to close it and tear down the building. This makes us sad...we will miss it. They will be opening a smaller, carry-out/delivery Pizza Hut closer to us right down the street...so it is bittersweet.
Last night when we decided to go pick up some pizzas for you for your supper you wanted to snap a few pics...saying in 20 or 30 years you would really enjoy looking back at the pics.
Here is one of you standing outside before we left. Anyway...I love you. School will be starting before we know it. I hope and pray it goes very well for us both again this year! I LOVE YOU!
Mom
XOXOXOX
Last night when we decided to go pick up some pizzas for you for your supper you wanted to snap a few pics...saying in 20 or 30 years you would really enjoy looking back at the pics.
Here is one of you standing outside before we left. Anyway...I love you. School will be starting before we know it. I hope and pray it goes very well for us both again this year! I LOVE YOU!
Mom
XOXOXOX
Sunday, July 15, 2012
Dear Noah....your school supplies are rolling in!
I cannot believe July is almost half over and it seems we only started it! All the Christmas in July events are taking place this weekend and next week and weekend. Your school supplies have been coming in via UPS...and I know before we realize it...school will be starting back up again for us! WOW...I am a bit shocked and apprehensive. I always have things I want to accomplish during the summer while you are out of school and I am off from teaching you...but so far have not yet even really begun those projects. I am not physically all that agile lately so the process would be slow to begin with...and I am hoping and praying I can get the major things I always want to accomplish actually FINISHED this year before schoolwork resumes.
I also wanted to work on special projects with you over the summer...teach you some things I never have time to during the regular school year..but you are all about being stuck in your room planted in front of your PC lately till all hours...playing Mine Craft or watching old videos of The Price is Right and Supermarket Sweep! Sometimes you forget to eat...take breaks..etc. So I am still trying to get a handle on that and control it a bit better.
Meanwhile we stopped up at the local Hallmark yesterday for the Keepsake Ornament Premiere. That is a family tradition and we enjoyed it.
We seem to be in a drought...no rain for a long time..lots of sun..and no rain in sight.
I should have put up a pool for you this year..maybe that would get you outside moving around more.
Regardless I love you. You said you are happier at Christmastime than other times of the year....and you are looking forward to the tree going up this year..etc.
More later..
I love you lots!
Forever...
Mom
XOXOXOXOX
I also wanted to work on special projects with you over the summer...teach you some things I never have time to during the regular school year..but you are all about being stuck in your room planted in front of your PC lately till all hours...playing Mine Craft or watching old videos of The Price is Right and Supermarket Sweep! Sometimes you forget to eat...take breaks..etc. So I am still trying to get a handle on that and control it a bit better.
Meanwhile we stopped up at the local Hallmark yesterday for the Keepsake Ornament Premiere. That is a family tradition and we enjoyed it.
We seem to be in a drought...no rain for a long time..lots of sun..and no rain in sight.
I should have put up a pool for you this year..maybe that would get you outside moving around more.
Regardless I love you. You said you are happier at Christmastime than other times of the year....and you are looking forward to the tree going up this year..etc.
More later..
I love you lots!
Forever...
Mom
XOXOXOXOX
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This website is part of the autism-assembly, this is a coalition of
members of the autistic community who share the common goal of seeking
acceptance for those on the autistic spectrum, who aim to educate about
autism, and who are not seeking a cure for autism. This is part of the
global autism rights movement.