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

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.

I love you to the moon and back again Noah...again and again and again..to infinity and beyond..forever I will.

Mom
XOXOXO

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

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

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)

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

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:

• 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)

Cardiovascular complications
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
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.

Lung complications
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

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

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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

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

Dear Noah..you are still super flexible!

You are still so flexible. I need to work on this. You can still put both feet/legs BEHIND  your head...here you are putting 1 behind your head...with your aunties trying to see if you can then walk or stand up...I think you could have stood up with help...but you did manage to crawl along on your hands a bit with your leg over  your head.

You are my silly boy...who is rapidly growing up to a young man.

I love you..cannot believe you are already 13-1/2 years old.

Mom
XOXOXOX

Dear Noah....another summer hair cut!

Noah getting his summer hair cut. He likes it short in the summer especially!

I personally cannot believe we will be heading into JULY already...where is the summer going? I always make all these plans...and unless I start to really get my butt in gear Mr. Noah...I won't be getting things accomplished again like I had wanted this summer....and we won't be doing some of the things I had wanted.

Today I want to work on a GRAND PLAN and write out all my/our goals...I sometimes even put that off...so hopefully it will help me actually get things done around here. Meanwhile you are all about MINE CRAFT and playing it or watching videos about it in your room every hour you are awake pretty much. Trying to get you out of your room to do anything can be difficult but you do it for me sometimes. Today is a nice day...hopefully you will come out and enjoy it some with me!

Love you lots...you are growing up so fast. One of the biggest things I think that is the most difficult for me to handle right now with you....is how I know you love me or other people in the family....but you are also pretty aloof to it all....and not very emotional about anything...not really "showing" how you feel. We talked about when people pass on for example...and you said while you might be sad or feel a little sad...you would not cry...and in fact...I know this to be true....and you just go about your day as usual. I know this is definitely part of your being autistic...and something I try to grasp...and I definitely know you love me...but also know you can do just fine WITHOUT me in your life. This is a good feeling but also a little sad for me...lol...I am not going to lie about it..but I am more thankful you will be FINE really than NOT.

I saw this best portrayed in the movie SNOWCAKE when Sigourney Weaver (sp?) plays an autistic person...and her daughter gets killed in a car accident...the man who had been driving her daughter and felt responsible for the accident goes to apologize to Sigourney the mother...and she answers the door..he tells her about him being the one who was driving....etc....and she just says "Oh okay" and shuts the door. He stands there not understanding why she does not seem more emotional than she does. He eventually gets inside her house and she ends up comforting him more than he comforting her and they become friends. She is very aloof and matter-of-fact about the accident and details and the fact that her daughter died...not showing any sadness or crying...etc. That is how you are when you are in situations where most would probably cry or show their sadness..etc. You just go on about your day as usual.

As you have gotten older...this has become much more pronounced. It is not just part of you becoming a typical teenager..as I know most kids do distance themselves from their parents and think their parents are idiots and know nothing...etc...or embarrass them. It is much more than that and has become more enhanced. I try to teach you what the normal responses are for most people...but we also talk about how that is probably never going to be a normal reaction or response for you..not instinctively and natural at least..and I certainly don't want you to "fake" anything...but I also want you to try to understand WHY people might be sad or cry over certain things that happen in life and why you should be considerate of their feelings and emotions and respect them.

Over the years as I sit here looking back over how far you have come and all we have accomplished so far in your life and world..I am amazed...but also realize we have a ways to go...though the mechanics of it all have greatly changed.

So here's to summer and fun-filled days and memory making and learning and preparing you to be out on your own one day!

I love you Noah Wesley.....so much.

Mom XOXOXOXO

Dear Noah....pool fun with your cousin Miss Audrey

We went to your Aunt Angie's house on Saturday for her birthday party...and you kids got to go swimming in the afternoon. It was very crowded....mostly adults...and after a troubled start where you did not think you were going to end up getting to go swimming and had a minor meltdown...you all ended up going and had a great time.

This is a great photo collage Angela took...

Love you Noah..

Mom

Dear Noah.....what to do..what to do...

Noah...my little man....you are growing up for sure....you are getting taller and a mind of your own. You inform me you plan or wish to move out when you are 18. I can't say much...I was the same when I was growing up...and swore as SOON as I turned 18 I would be moving out...and I DID just that..but my life at home was TONS more stressful than what you have here at home. This does not "hurt" my feelings really as I believe this should be ALL parents' goals...to bring their children up in such as way that they cannot wait to get out and fly the nest with their wings spread way out wide and be independent...etc.

BUT (there is always a but isn't there?)....I am anxious about it all. I do hope and more importantly PRAY you will be MORE than able to be successful at whatever you desire in life ..and can move out when you want and be more than fine...but currently you are all about being on your computer basically during any waking hour...and not stopping and going to bed at a decent hour. I know you think you should pretty much decide for yourself even now...your own schedule and what you do...etc..and I pretty much do allow you to do that. I don't mind you staying up late most nights as then you are still sleeping in the daytime when I work and that just works out best for us both.

BUT...staying up till 4:30 a.m. or later is TOO late! It does not matter that you don't get up then till 2:00 a.m.! You miss so much more that life has to offer shut up in your room all the time ....not hardly ever coming out for anything other than eating (as I now make you eat at the table and NOT in your room)...so I see you then. There are also times I just say we ARE going to do this or that or go here or there and make you get ready and go too....and times you do want to go places.  You are legally old enough to be left at home alone but I do not feel comfortable doing that...you still have many emotionally immature thoughts...running parallel with those grown-up  moments and thoughts. What a mish-mash of emotions growing up can cause.

SO...now I have to give a consequence for you continuing to not listen or go to bed at a decent hour. I mean I let  you stay up now till 1:00 a.m. through the week and on weekends 2:00 or even 2:30 a.m. I think that is PLENTY late enough for a 13-year-old boy. I know you will soon be getting even older and then wanting to do more of whatever it is you want to do...but...I think you have to learn to be somewhat disciplined and set some limits. I have come up with the consequence you lose 1 hour of PC time for each hour you are up past a decent bedtime. I believe this will work as I have done this before and it worked.

Otherwise...this has all made me think about a lot of things. Like how I am already almost feeling like I live alone, and you  have already moved out...since you are in the house and here..but not really out here with me much doing anything anymore. I can hear you in the background making noises...and doing "your thing" in the bedroom on the computer...but I have to wonder if you are not also missing out on a lot more things....well, in fact you are...and then I am too I guess. I am going to be making some changes this summer to help you break out of this pattern you are in. You will still be allowed to do time in your room but...I will be pulling you out to go on field trips and work on projects here at home...and coming out more often from your room than you do now.

AND ..I have been wondering what life will be like for ME when  you do move out. I have devoted my life to you since you were born...especially once I found out you had autism and a lot of issues to deal with when you were little. AND I did this because I WANTED TO....do NOT misunderstand me. I WANTED to change my entire life around so I could be here for  you 100%! Nothing else was acceptable to me. AND so I did just that! You  have since overcome many of those challenges you had when you were little but still have a ways to go. While contemplating your being successful and being able to manage everything out on your own....I have to ask myself, "where will that leave me?" lol.  I mean I used to not have "any" free time...as ALL my time outside of my full-time job was spent with  you....teaching you things....prompting you..redirecting you....teaching you how to handle "changes"...etc. How to just "BE" in this world...as it was very difficult for you and chaotic for you. Now when I am done with work and school with you...I have TONS of free time. This is almost a foreign feeling to me....as I have gone basically 13 years without really spending much time on things I might have wanted to do.

I am slowly finding things to fill up my time..mostly doing artwork and being creative, BUT..child support only lasts so long....same with your SSI money...and I will need to find ways to compensate that income one day. I am not really worried there as we are not currently receiving SSI for you anyway...but the child support will be something..I will definitely need to be debt free by the time you turn 19 or so...in case child support stops. Your dad has always said he would continue paying child support as long as you needed extra help with income (and it is even in our divorce decree)..but...I am wishing to avoid depending or counting on that one day...and that would be YOUR money then anyway..not mine. You would need it to help YOU pay YOUR own bills then if you are out on your own. I work full time still from home and I love my job...but do not make a lot of money at it. So debt needs to decrease for me in the future or my income should increase or both actually. MY body is also not always cooperating with me these days...making even simple everyday things extremely difficult for me...so I have to wonder how long I can function doing things owning a home...etc.

I know this is all part of growing up...you getting older....spreading those wings to fly....and taking off to being your own life somewhere...and I am already wondering about that empty nest...and would I really need such a big house or all this stuff anymore...etc. Probably not...or how would I even manage keeping it up..you know? After all, as YOU get older so will I. This can be almost depressing. lol

SO I have a lot on my mind right now...wondering what I will do or where I might end up or where you will be one day...what you will do for a living...if you will be safe...etc. Do moms though ever stop wondering about those things?

Hey..maybe you can design a cool house for yourself with a patch of land somewhere on your property to build me a tiny house....I would not be up in your business but yet close by if you needed me...or I needed something maybe from you. You have mentioned this to me before...about  me having like a garage apartment for YOU in my home....so you would have your own place...but still be close to me in case you needed things...probably like a meal other than eating out! lol.

You are NOT happy thinking about how one day you might have to HELP your mom do anything in life and have told me you wish to GET OUT before you had to do anything like that. I  have to admit that is pretty  hurtful...but you are 13 and have autism, and have never really cared or thought about what all you say and how it might make someone else feel. That was something we had to teach you and in fact, I still am teaching you.  I know you have said you could HIRE someone to help me if I needed it..so I guess that is all that is important. I have to wonder though if I would ever see you again once you moved out. I would certainly hope so..but you really seem pretty fine even now all on your own and even talk about moving to another state...even one where you have  no relatives.

Mixed emotions...mixed drama....everything is just a mix right now for you and me both...and you are only 13! In 5 years you will be 18...hard to believe....but we are going to start working on life skills this summer...so I can better prepare you for that big world of "reality" one day coming up sooner than I can even imagine.

I love you Noah....I know you love me too....and you certainly do NOT owe me anything...but I do hope one day you can be thankful for me and our time together...and hope you have some memories and are not filled with regret one day for all the things we could have done but did not.

Mom

xoxoxox

Dear Noah....you are now nearsighteded....and have Christopher Robbin's legs...

Well...you are the same age I was when I became nearsighted...and now you have glasses. You actually like them and we all think you look handsome in them. Even your dad liked them!

Meanwhile...back when you got new gym shoes last..you picked out some black ones...and it always reminded me...(when you wore shorts and the white socks)..of Christopher Robbin's legs from Winnie the Pooh...

so now each time you walk by..I hear a snippet of the Winnie the Pooh song play in my head but I substitute "Christopher Robbin legs"....and we laugh...I told you I loved you and your legs and their in-between stage right now...not quite young adult...not quite the child anymore...but still reminding me of Christopher Robbin. I am going to devote an entire spread in a photo album of you and your legs...and put in a tiny recorder with me singing that snippet of the song and my word substitutes! I love you...even if I tease you sometimes...but you know that! Mom XOXOXOX

Noah and cousin Audrey...growing up so fast

Noah and Pepper Jax....

Noah and Pepper Jax...my parents' dog....

Dear Noah....after TEN years you have finally finished speech therapy!

WOW...this day has been a LONG time coming. You have come so very far with your speech, speaking, reading, talking, expressing yourself, etc. You still have a ways to go. We often look back at old videos and are amazed at how far you have come in talking. Even you cannot understand some of your old videos where you were talking.

I think speech therapy would still be continuing on had I allowed them to continue with social skills questions and scenarios for you...because you never quite met those goals....according to them, but I felt that was not really speech therapy's job..it was my job...or your dad's job..to teach you about social scenarios and what is an appropriate response and how to react. I never agreed with allowing speech therapists to try to teach you those things, but for some reason all your former teachers and schools tried to always have it "included" as part of speech therapy's job. I know it was because of cost. They had NO social skills classes or teachers or instructors for social skills or anyone qualified, so they figured they could save time and money and let speech therapists handle it all. They actually told me this at your former school.

SORRY...I do not agree...because this then also takes "time away" from speech therapy, AND on most IEPs like yours...you only get so many minutes a MONTH for speech therapy...and if too much of that precious time is spent on social scenarios instead of speech...your therapy can go on forever.

NOT to mention the fact that you may always struggle with social scenarios. People tend to forget that autism is not something you will outgrow. YES you CAN LEARN and YES you CAN IMPROVE and YES you CAN practice responses and situations....until YOU learn a way to COPE better for you in those particular instances and situations and learn how to respond. Does this mean you are no longer autistic or have outgrown it? NO...because it is a neurological disorder...your brain processes things differently than others and likely always will. What comes as second nature to us.....you will likely still always have to search your brain for prior similar instances or scenarios for the appropriate response or reaction. It will not come as a knee-jerk reaction to you....but slightly delayed after a little thought. BUT those synapses in exposure to a situation to your response CAN get faster with time.

So...after I had speech therapy END the social skills aspect on your goals....as I felt socially you were fine and had nothing on their list left to accomplish....they focused more on the speech therapy part...and voila...you have finally MET your goals.

So Noah, after 10 years...you have finished your speech therapy! CONGRATULATIONS!

I love you!

Mom
XOXOXOX

Dear Noah...you still have a unique way to sit on chairs to eat

you sit perched like a bird. I remember when you were smaller..you always sat on the toilet like this...and to this day...you sit like this to eat whenever you can....it seems difficult for you to sit and eat fully seated....at least here at home. You have to sit perched or stand up. Sitting perched in your room in front of your computer...you always stretch out your T-shirt to fit OVER your perched legs...so many of your shirts have holes ripped under the armpits now....we will have to buy larger sizes to avoid that if you keep sitting like this and stretching the shirts out over your legs.

You are growing up fast...getting tall and skinny! Very lean....your mustache is showing up more all the time...and you are officially taller than I am now I think. Last night you slept on the loveseat since I was on the sofa...and when I looked over this morning...you were on your back but had your legs up around your chest crossed over in Indian style fashion...you do that a lot. Not sure how you can sleep like that..but you do.



This is how you were sleeping if you imagine you lying on your back and eyes shut..but in this position with your legs up on your chest!



Here you were also reading..



See that T-shirt stretched out over your legs?


I love you....more later!

mom
xoxox

have a "GOOD" day...being grateful

Dear Noah - opening a belated gift from a good friend!

We got a package from a very good friend of ours in Florida the other week and you opened it and found this inside...a very cool monster truck toy..which you loved playing with. In fact..you actually TURNED OFF your computer to play with this ...and I even played it with you. We had fun...I must admit it is fun to play with.

Hard to believe January is almost over. We have been very fortunate thus far as far as winter goes...with very little snow. A dusting here and there....more unseasonably mild temps than normal....some rain. We even had THUNDER during some storms this month. I do not think I have ever heard thunder in January before! I think the most we have gotten so far has been about 4-6 inches ....and otherwise it is nice dustings and then they blow or melt away...it sure does look pretty to see it snow though. (and this is the year I bought you actual snow boots!) lol.

Speech therapy is back on....I have revamped it now so you are only receiving actual SPEECH THERAPY and no more social scenarios they were trying to keep interjecting in your speech therapy time. You are doing fine socially and I have no worries there...they need to spend more time on the speech therapy part. So that is finally happening and maybe you will be able to make some faster progress this way. After all, it has been like 10 years that you have been in speech therapy now!

School is going well...you are really making heads and tails out of your math which excites both you and me. It is like the lightbulb finally went off in your brain and you just GET IT. I get the luxury of refresher courses on the way in all subjects as I teach you..or I even learn things I never knew before. MANY times you know an answer when I DO NOT! However, getting you to break away from your computer to do school remains a huge challenge. In fact...getting you away from it for much of anything is a challenge. BUT you have been that way for years. You do not seem to need anyone as far as much of anything...and I realize that is the autistic parts of you....and I too am very much okay being by myself a lot of the time...but I did remind you that you will have to be around people some of the time...and asked you if you could or even wanted to do anything with people...you said ONLINE..I asked about real life..you said "with a girl." haha...so I guess in the end you will be fine.

I saw this sign the other day posted online on Facebook and I was telling you about it. You just smiled...but when I got to the part about being 50 years you immediately stopped me cold and said, "well I don't have to worry about that stage because YOU WILL BE DEAD by then!" I proceeded to tell you that would only be less than 40 years away and I COULD VERY WELL still be VERY MUCH ALIVE thank you very much!



Well...I need to get your school time in for today..the day is fading fast and I have house cleaning to finish as well.

OH..you have been staying up like WAY TOO LATE...and that has to change!

Love you lots,

mom
x0x0x0x

Dear Noah....your visit over Christmas with your dad...

I just realized I forgot to upload photos here about your visit with your dad over Christmas break. He flew in from Colorado to spend a few days with us...and you had a great time visiting with him. This was the first time in 3 years since you had seen him last. You 2 played videogames together and trains...we opened presents...went out to eat....and just had a very nice visit. I know you have missed him a lot since he went back to Colorado. I still sometimes think maybe we should be living closer together so you could see him more often, especially as you are entering those teen years!

Here is a picture of the 2 of you I took at the Asian Buffet restaurant.

I love you Noah. Hard to believe you are now 13 years old! I think I forgot to post pics and anything about that too..your birthday on December 29th! See I was on vacation from work for over 2 weeks and I did not keep up online with posts I guess.

You are officially a teenager now....wow. So hard to believe. I will include just a couple of pics from your BD now too. We made up a Shutterfly photo book for your dad as a gift and 1 for us to keep with pics from his trip and the holidays. It turned out nice and he loved it.

I love you lots....

Mommy...mom.....
XOXOXOX

Happy New Year blessings to you and yours!

Noah and I are wishing you all a very blessed and happy, healthy, prosperous, abundant, joyful, and peaceful new year!