Tuesday, May 31, 2005

Dear Noah:

Okay...your mommy LOVES Christmas. Some think I am odd but I do. I am the kind who listens to Christmas music and watch Christmas movies all year long. I never tire of them. I anxiously look forward to when Hallmark comes out every year with their Season Premiere of ornaments (coming soon in July!). I decided to check online yesterday on Hallmark's website and sure enough...the CATALOG is already out online! SO many wonderful new ornaments coming out. We have quite a collection which will all become yours one day. SO we sat and looked at every page online yesterday and ooooooed and aaaaaaad. Making our lists of what we will have to get. Next we will go to the Hallmark store to pick up the catalog in person! Carlton Cards does not yet have their stuff online or in a catalog but we enjoy their stuff too. SO many wonderful memories and so many magical times let alone the day we officially celebrate Jesus' birth. Maybe those are some of the reasons we love that time of year so much?

Anyway...I hope you always will enjoy it as much as we do too. So far you seem to.

I love you more than the world Noah!


SOME of our family many years ago Noah. That is me with the long hair down front holding Heather. I look at that picture and wonder what has happened to your MOMMY!!!!!! Your aunt Melissa is to my right in the picture and then your Aunt Becky. Behind them is your grandma Custer and grandma Lincoln and my aunt Vera and uncle Sonny and his wife Eva and Uncle Ed and your uncle Chris and of course grandpa Custer. SO LONG ago but seems like yesterday. I sure do miss you Vera and Ed! Posted by Hello

Aunt Nancy shortly before she died at 42 years of age from breast cancer/lung cancer Posted by Hello

Aunt Nancy (on the left) and my mom or your grandma Lincoln (long time ago!) Posted by Hello

Here are pictures of your great grandma and grandpa...waving goodbye after a visit. This is how we always think of them too...as they always would run outside and stand on that front porch to wave goodbye to us...all the way down the street. We would turn around and they would still be there waving. Grandma still does that today! Posted by Hello

Here is a clean-shaven grandpa Custer. Grandpa Custer died on Thanksgiving morning 2003.. Posted by Hello

Here is your great grandpa Custer. WITH his beard that grandma did not like all that well! But that smile and him looking honery is what he was all about Noah.  Posted by Hello

Dear Noah:

Just thinking about your great grandpa (my grandpa) and my aunt (who you never got to even meet) who are no longer with us. Kind of makes me sad and makes me want to visit our family in Ohio! I will have to see if I have a picture I can post. Course then you start to think about all our family members who have passed on. And you realize time is tick tocking away.....second by second, minute by minute and going so FAST! You never feel like you have enough time for anything these days. And before you know it you will be all grown up and these days will all be nothing but memories.

I love you Noah!


Monday, May 30, 2005

Dear Noah:

Well we have had a nice Memorial Day weekend. It has been rainy and cold and very much like fall but we have enjoyed it. We have had 2 severe thunderstorms and hail today and some high winds. It has calmed down again. We just finished watching Spongebob Squarepants the Movie....you laughed a lot and we really did not think it was a bad as everyone had said it was. The David Hasselhoff part was really funy.

Making some homemade macaroni and cheese for supper. Daddy just put on What About Bob.....so I guess it is movie night tonight.

It is only about 46 degrees and dropping. Looks and feels like fall that is for sure. I need to get you in the tub...but you have not been showing any interest in that for the past couple of days. If not tonight TOMORROW FOR SURE my little man!

Love you anyway stinky butt! No...you are not really a stinky butt.



YEAH..what is that about? I have a crystal clear picture on this end and once I send it to my blog it ends up being a bit grainy and fuzzy looking. Definitely NOT the crystal clear shot I have on this end. Maybe I need to change a setting somewhere. All about settings I guess. Just don't want everyone to think my pictures are that out of focus as on this end they are not.

Ignore the Date/Time Stamp on my photos!

Yes..please ignore the date/time stamp on my photos. It will perpetually say we live in 2022. I have changed the date to the correct reading many times over but it always comes back to this 2022. Have no idea why and I don't really care. I have even turned "off" the date/time stamp option and it magically reappears showing once again.....2022. So....for picture purposes we apparently live in 2022. I just ignore it now and it does not bother me...however...it really BUGS Noah! I have told him to just ignore it too but that is a lot harder for him to do. I guess my fingers must keep hitting something on the buttons somewhere!

Noah was in a rare mood to pose on this day! He kept running around the park and would say "how about this pose?" So I ended up taking tons of shots of him that day. Here is a good one! Posted by Hello

A tree at the park where a woodpecker has made a home. You don't see the woodpecker here now and I was surprised the bird would choose to live so low but he was sitting in that hole many times when we stop by this park.  Posted by Hello

Noah on slide at park - 1 Posted by Hello

Noah on slide at park-6 Posted by Hello

Sunday, May 29, 2005

Noah's FALL COLORS painting from May 28, 2005 Posted by Hello

Noah's SUMMER COLORS painting from May 28, 2005 Posted by Hello

Dear Noah:

We all sat down at the kitchen table and painted yesterday. You were so excited to finally be able to paint with "daddy". I asked if you were happy now. You said "I am very happy!". I will have to scan a couple of your paintings and post here. They are beautiful. You came up with a great way to paint using a roller brush and mixing different colors. You even named them. I will post it next.

LOVE YOU my angel boy!


Saturday, May 28, 2005

Dear Noah:

THANKS FOR THE LAUGH today. Talk about making up lost time for creativity and imagination! I happened to look over today and there you stood....all of a sudden you kind of bent over and put your hand held recorder down by your butt and you farted! You ran down the hall giggling as I had happened to catch you in the act and my mouth just fell open here at my seat. My mouth is still hanging open in disbelief, but more now because I am laughing so hard. You have been recording all kinds of things. I think it is pretty creative you decided to test this out! hahahahahah.

(course I have informed you that you can ONLY do this here at home and not make it a habit of course!)

oh my........HAHAHAHAHAHAHHA ;)

Noah and his new bike! Posted by Hello

Noah filming his doctor

A lot of information....

I know I just posted a lot of information and if you don't care to read it all that is fine. I felt it necessary to try to at least post the basics on both autism and Asperger's syndrome as they are closely related and confused all the time. MANY children are misdiagnosed or have their diagnoses changed over time again and again. The reason for this is because all of these syndromes and disorders all fall under the BIG umbrella of "autistic spectrum disorders".

SO a child, like my Noah, can and usually will have many characteristics of many of the disorders on the spectrum. This makes it extremely hard to just label them with one specific thing. Noah's doctor told us (and I believe her) that he has symptoms of about 10 different things. However, it all falls back into autistic spectrum disorder as it covers the entire range of the spectrum and characteristics, even though he would officially be classified as having autism.

While he is officially classified as having autism, he has also displayed characteristics of Asperger's syndrome (except for the fact that he had no language till about 3 which means this would normally be ruled out), PDD, and PDD-NOS. BUT it still all comes back to autism. Some say he has Asperger's syndrome but if the "qualifying factor" means he needed to be talking when he was not...then he would not have it. However, other than the language part he has had ALL the other symptoms of Asperger's syndrome.

I know it can be so confusing. AND our local school district won't even recognize the term "autistic spectrum disorder" as THE OFFICIAL DIAGNOSIS for a child. They want to break it down further and know which exact part your child fits into. SO when our physician notified the school that Noah has autistic spectrum disorder she said they would question that and want to know WHAT part of the spectrum he was on. She felt saying autistic spectrum disorder was more appropriate as there are so many characteristics involved. However, he officially was diagnosed with infantile autsim (not recovered obviously), sensory integration disorder (not recovered obviously), speech language delay (both receptive and expressive), hypotonia (low muscle tone) with some motor skill delays that Noah has recovered from, hyperflexible joints, and generalized anxiety disorder.

So anyway...there you have it. The basics...but not always so easy to understand I guess. I have come across many definitions for autism but the fact that it is so complex I think is why the definitions end up becoming complex even if they started out sounding simple.

More on Asperger's syndrome

What Is Asperger Syndrome?

By Barbara L. Kirby Founder of the OASIS Web site (http://www.aspergersyndrome.org/) Co-author of THE OASIS GUIDE TO ASPERGER SYNDROME (Crown, 2001, Revised 2005)

Asperger Syndrome or (Asperger's Disorder) is a neurobiological disorder named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills. In spite of the publication of his paper in the 1940's, it wasn't until 1994 that Asperger Syndrome was added to the DSM IV and only in the past few years has AS been recognized by professionals and parents.

Individuals with AS can exhibit a variety of characteristics and the disorder can range from mild to severe. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. It's important to remember that the person with AS perceives the world very differently. Therefore, many behaviors that seem odd or unusual are due to those neurological differences and not the result of intentional rudeness or bad behavior, and most certainly not the result of "improper parenting".

By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naiveté, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying. While language development seems, on the surface, normal, individuals with AS often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors." However, persons with AS can be extremely literal and have difficulty using language in a social context.

At this time there is a great deal of debate as to exactly where AS fits. It is presently described as an autism spectrum disorder and Uta Frith, in her book AUTISM AND ASPERGER'S SYNDROME, described AS individuals as "having a dash of Autism". Some professionals feel that AS is the same as High Functioning Autism, while others feel that it is better described as a Nonverbal Learning Disability. AS shares many of the characteristics of PDD-NOS (Pervasive Developmental Disorder; Not otherwise specified), HFA, and NLD and because it was virtually unknown until a few years ago, many individuals either received an incorrect diagnosis or remained undiagnosed. For example, it is not at all uncommon for a child who was initially diagnosed with ADD or ADHD be re-diagnosed with AS. In addition, some individuals who were originally diagnosed with HFA or PDD-NOS are now being given the AS diagnosis and many individuals have a dual diagnosis of Asperger Syndrome and High Functioning Autism.
For your information, I've included below a copy of the DSM IV Description. In addition, I've also added a more down-to-earth description that was originally posted to the autism listserv.
Diagnostic and Statistical Manual of Mental Disorders (DSM IV) Description (p77)
A description provided by Lois Freisleben-Cook

Diagnostic Criteria For 299.80 Asperger's DisorderA. Qualitative impairment in social interaction, as manifested by at least two of the following:

marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia

A More Down-to-Earth Descriptionby Lois Freisleben-Cook
I saw that someone posted the DSM IV criteria for Asperger's but I thought it might be good to provide a more down to earth description. Asperger's Syndrome is a term used when a child or adult has some features of autism but may not have the full blown clinical picture. There is some disagreement about where it fits in the PDD spectrum. A few people with Asperger's syndrome are very successful and until recently were not diagnosed with anything but were seen as brilliant, eccentric, absent minded, socially inept, and a little awkward physically.

Although the criteria state no significant delay in the development of language milestones, what you might see is a "different" way of using language. A child may have a wonderful vocabulary and even demonstrate hyperlexia but not truly understand the nuances of language and have difficulty with language pragmatics. Social pragmatics also tend be weak, leading the person to appear to be walking to the beat of a "different drum". Motor dyspraxia can be reflected in a tendency to be clumsy.

In social interaction, many people with Asperger's syndrome demonstrate gaze avoidance and may actually turn away at the same moment as greeting another. The children I have known do desire interaction with others but have trouble knowing how to make it work. They are, however, able to learn social skills much like you or I would learn to play the piano.

There is a general impression that Asperger's syndrome carries with it superior intelligence and a tendency to become very interested in and preoccupied with a particular subject. Often this preoccupation leads to a specific career at which the adult is very successful. At younger ages, one might see the child being a bit more rigid and apprehensive about changes or about adhering to routines. This can lead to a consideration of OCD but it is not the same phenomenon

Many of the weaknesses can be remediated with specific types of therapy aimed at teaching social and pragmatic skills. Anxiety leading to significant rigidity can be also treated medically. Although it is harder, adults with Asperger's can have relationships, families, happy and productive lives.

NOTE: Lois Freisleben-Cook's description was originally a post to the bit.listserv.autism newsgroup/listserv . I thought it was an interesting explanation and included it on this site. A visitor recently pointed out that not all Asperger Syndrome children exhibit superior intelligence and felt that the post was somewhat misleading. It is my understanding that the majority of children diagnosed with AS do have at least an I.Q. in the normal range and that many children do have I.Q.'s in the superior range. It is important that you take the time to read through several explanations of AS, many of which are available on O.A.S.I.S. In addition, use the bibliographies, the libraries, and those professionals working with you to further your knowledge about Asperger Syndrome.

What is Asperger's Syndrome

Asperger's Disorder is a milder variant of Autistic Disorder. Both Asperger's Disorder and Autistic Disorder are in fact subgroups of a larger diagnostic category. This larger category is called either Autistic Spectrum Disorders, mostly in European countries, or Pervasive Developmental Disorders ("PDD"), in the United States. In Asperger's Disorder, affected individuals are characterized by social isolation and eccentric behavior in childhood. There are impairments in two-sided social interaction and non-verbal communication. Though grammatical, their speech is peculiar due to abnormalities of inflection and a repetitive pattern. Clumsiness is prominent both in their articulation and gross motor behavior. They usually have a circumscribed area of interest which usually leaves no space for more age appropriate, common interests. Some examples are cars, trains, French Literature, door knobs, hinges, cappucino, meteorology, astronomy or history. The name "Asperger" comes from Hans Asperger, an Austrian physician who first described the syndrome in 1944. An excellent translation of Dr. Asperger's original paper is provided by Dr. Uta Frith in her Autism and Asperger Syndrome.

Autism FAQ-Characteristic Behavior (not all)

Autistic children display unusual behavior. A typical autistic child's behavior is likely to include some of the following:

no speech
non-speech vocalizations
delayed development of speech
echolalia: speech consisting of literally repeating something heard
delayed echolalia: repeating something heard at an earlier time
confusion between the pronouns "I" and "You"
lack of interaction with other children
lack of eye contact
lack of response to people
treating other people as if they were inanimate objects
when picked up, offering no "help" ("feels like lifting a sack of potatoes")
preoccupation with hands
flapping hands
balancing, e.g. standing on a fence
walking on tiptoes
extreme dislike of certain sounds
extreme dislike of touching certain textures
dislike of being touched
either extremely passive behavior or extremely nervous, active behavior
extreme dislike of certain foods
behavior that is aggressive to others
lack of interest in toys
desire to follow set patterns of behavior/interaction
desire to keep objects in a certain physical pattern
repetitive behavior (perserveration)
self-injurious behavior
"islets of competence", areas where the child has normal or even advanced competence. Typical examples:
drawing skill
musical skill
calendar arithmetic
memory skills
perfect pitch

There are other conditions which sometimes coincide with autism:
synesthesia(an unexpected sensation arises when a particular sense modality is stimulated)
Cerebellar abnormalities revealed by MRI scans
raised levels of serotonin in the brain
sensory integration disorder
generalized anxiety disorder

Autism FAQ-Definition of Autism

The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV):


A) A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by
at least two of the following:
a) marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction
b) failure to develop peer relationships appropriate to
developmental level
c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)
d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
"mechanical" aids )

(2) qualitative impairments in communication as manifested by at
least one of the following:
a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative
modes of communication such as gesture or mime)
b) in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others
c) stereotyped and repetitive use of language or idiosyncratic
d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in
intensity or focus
b) apparently inflexible adherence to specific, nonfunctional
routines or rituals
c) stereotyped and repetitive motor mannerisms (e.g hand or finger
flapping or twisting, or complex whole-body movements)
d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:

(1) social interaction
(2) language as used in social communication
(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder
or Childhood Disintegrative Disorder

The following definition is from the Autism Society of America:
AUTISM is a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. It occurs in approximately 1 out of every 160 births and is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.

The symptoms are caused by physical disorders of the brain. They include:
Disturbances in the rate of appearance of physical, social and language skills.
Abnormal responses to sensations. Any one or a combination of senses or responses are affected: sight, hearing, touch, pain, balance, smell, taste, and the way a child holds his body.
Speech and language are absent or delayed while specific thinking capabilities might be present.
Abnormal ways of relating to people, objects and events.

Autism occurs by itself or in association with other disorders which affect the function of the brain such as viral infections, metabolic disturbances, and epilepsy. It is important to distinguish autism from retardation or mental disorders since diagnostic confusion may result in referral to inappropriate and ineffective treatment techniques. The severe form of the syndrome may include extreme self-injurious, repetitive, highly unusual and aggressive behavior. Special educational programs using behavioral methods have proven to be the most helpful treatment.

AUTISM IS TREATABLE -- Early diagnosis and intervention are vital to the future development of the child.

Note: an example of a dictionary-definition of autism is: "absorption in fantasy as escape from reality". Obviously there is a big difference between the traditional definition documented by dictionaries and the syndrome this memo addresses. The difference stems from changes in word usage: in the 30s and 40s, psychologists first observed a number of children with the above symptoms and called it "early infantile autism", borrowing the word "autism" which had already been applied by psychologists to describe people who try to escape from reality. Today, most discussion of autism (at least in the USA) centers on children diagnosed as having "early infantile autism" and everyone refers to it simply as "autism". But occasionally there is confusion when someone who means "early infantile autism" talks to someone who is thinking of the original definition. In this document, we will use the term "autism" in the sense of "early infantile autism" and refer explicitly to "early infantile autism" only when discussing both senses of the word.

The definition of the syndrome listed above is oriented to children, but note that such children do not outgrow their autism. Much of the literature on autism deals with children because educating them is such a big issue that more research, education, and writing on autism is about children than adults.

What is Autism?

Autism is a complex developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism impacts the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.

Autism is one of five disorders coming under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by "severe and pervasive impairment in several areas of development," including social interaction and communications skills (DSM-IV-TR). The five disorders under PDD are Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder (CDD), Rett's Disorder, and PDD-Not Otherwise Specified (PDD-NOS). Each of these disorders has specific diagnostic criteria as outlined by the American Psychiatric Association (APA) in its Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).

Autism is a spectrum disorder. The symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. Two children, both with the same diagnosis, can act very differently from one another and have varying skills.

Parents may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled. More important than the term used is to understand that, whatever the diagnosis, children with autism can learn and function productively and show gains with appropriate education and treatment.

Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. The person may have difficulty initiating and/or maintaining a conversation. Communication is often described as talking at others (for example, monologue on a favorite subject that continues despite attempts by others to interject comments).

People with autism process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits:

Insistence on sameness; resistance to change
Difficulty in expressing needs; uses gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing, crying, showing distress for reasons not apparent to others
Prefers to be alone; aloof manner
Difficulty in mixing with others
May not want to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Spins objects
Inappropriate attachments to objects
Apparent over-sensitivity or under-sensitivity to pain
No real fears of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross/fine motor skills
Not responsive to verbal cues; acts as if deaf although hearing tests in normal range.

For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our senses of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach fuzz as we pick it up, its sweet smell as we bring it to our mouth, and the juices running down our face as we take a bite. For children with autism, sensory integration problems are common. Their senses may be over-or under-active. The fuzz on the peach may actually be experienced as painful; the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors are actually a result of sensory integration difficulties.

There are many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.

One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children with autism, they can and do give affection. But it may require patience on a parent's part to accept and give love in the child's terms.

There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder.

While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.

Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.

Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. Early in 2002, The Agency for Toxic Substances and Disease Registry (ATSDR) prepared a literature review of hazardous chemical exposures and autism and found no compelling evidence for an association; however, there was very limited research and more needs to be done.

The question of a relationship between vaccines and autism continues to be debated. In a 2001 investigation by the Institute of Medicine, a committee concluded that the "evidence favors rejection of a causal relationship.... between MMR vaccines and autistic spectrum disorders (ASD)." The committee acknowledged, however, that "they could not rule out" the possibility that the MMR vaccine could contribute to ASD in a small number of children. While other researchers agree the data does not support a link between the MMR and autism, more research is clearly needed.

Whatever the cause, it is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.

There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited.

A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers') input and developmental history are very important components of making an accurate diagnosis. At first glance, some persons with autism may appear to have mental retardation, a behavior disorder, problems with hearing, or even odd and eccentric behavior. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, since an accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.

As part of a well-baby/well-child visit, your child's doctor should do a "developmental screening" asking specific questions about your baby's progress. The National Institute of Child Health and Human Development (NICHD) lists these five behaviors that signal further evaluation is warranted:

Does not babble or coo by 12 months
Does not gesture (point, wave, grasp) by 12 months
Does not say single words by 16 months
Does not say two-word phrases on his or her own by 24 months
Has any loss of any language or social skill at any age.

Having any of these five "red flags" does not mean your child has autism, but because the characteristics of the disorder vary so much, a child should have further evaluations by a multidisciplinary team that may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professionals knowledgeable about autism.

While there is no one behavioral or communications test that can detect autism, several screening instruments have been developed that are now used in diagnosing autism.

CARS rating system (Childhood Autism Rating Scale), developed by Eric Schopler in the early 1970s, is based on observed behavior. Using a 15-point scale, professionals evaluate a child's relationship to people, body use, adaptation to change, listening response, and verbal communication.

The Checklist for Autism in Toddlers (CHAT) is used to screen for autism at 18 months of age. It was developed by Simon Baron-Cohen in the early 1990s to see if autism could be detected in children as young as 18 months. The screening tool uses a short questionnaire with two sections, one prepared by the parents, the other by the child's family doctor or pediatrician.

The Autism Screening Questionnaire is a 40 item screening scale that has been used with children four and older to help evaluate communication skills and social functioning.

The Screening Test for Autism in Two-Year Olds, being developed by Wendy Stone at Vanderbilt, uses direct observations to study behavioral features in children under two. She has identified three skills areas - play, motor imitation, and joint attention - that seem to indicate autism.

Whether you or your child's pediatrician is the first to suspect autism, your child will need to be referred to someone who specializes in diagnosing autism spectrum disorders. This may be a developmental pediatrician, a psychiatrist or psychologist. Other professionals may be included who are better able to observe and test your child in specific areas.
This multidisciplinary assessment team may include some or all of the following professionals. They may also be involved in treatment programs.

Developmental pediatrician - Treats health problems of children with developmental delays or handicaps.
Child psychiatrist - A medical doctor who may be involved in the initial diagnosis; can prescribe medication and provide help in behavior, emotional adjustment and social relationships
Clinical psychologist - Specializes in understanding the nature and impact of developmental disabilities including autism spectrum disorders. May perform psychological and assessment tests and may help with behavior modification and social skills training.
Occupational therapist - Focuses on practical, self-help skills that will aid in daily living such as dressing, eating; may work on sensory integration, coordination of movement, and fine motor skills.
Physical therapist - Helps to improve the use of bones, muscles, joints, and nerves to develop muscle strength, coordination and motor skills.
Speech/language therapist - Involved in the improvement of communication skills including speech and language.
Social Worker - May provide counseling services or act as case manager helping to arrange services.

It is important that parents and professionals work together for the child's benefit. While professionals will use their experience and training to make recommendations about your child's treatment options, you have unique knowledge about his/her needs and abilities.

Once a treatment program is in place, communication between parents and professionals is essential to monitor the child's progress. Here are some guidelines for working with professionals:

Be informed. Learn as much as you can about your child's disability so you can be an active participant in determining care. If you don't understand terms used by professionals, ask for clarification.

Be prepared. Be prepared for meetings with doctors, therapists, and school personnel. Write down your questions and concerns, and then note the answers.

Be organized. Many parents find it useful to keep a notebook detailing their child's diagnosis and treatment as well as meetings with professionals.

Communicate. It's important to ensure open communication - both good and bad. If you don't agree with a professional's recommendation, for example, say specifically why you don't.

Getting Past the Diagnosis
Often, the time immediately after the diagnosis is a difficult one for families, filled with confusion, anger and despair. These are normal feelings. But there is life after a diagnosis of autism. Life can be rewarding for a child with autism and all the people who have the privilege of knowing the child. While it isn't always easy, you can learn to help your child find the world an interesting and loving place.

(ALL taken from the Autistic Society of America's website at: www.autism-society.org

Dear Noah:

I have been reading and writing back to another woman online who has a 9 year old son with Asperger's syndrome. He was only diagnosed a year ago. Course his diagnosis is questionable and while she continues to believe it is Asperger's syndrome I still wonder if it is straight out autism. Her son has a speech delay and has had problems with speech and kids with Asperger's usually don't. But that is here nor there. The issue Noah is this. As she writes more and more in her journal it becomes more and more clear to me at least that she seems to be in denial still about her son and does not want to accept his diagnosis as just part of him and who he is. She has not told her son anything about his diagnosis so he continues to feel frustrated and not understand why he does some of the things he does sometimes. She continues to keep calling him "normal with some quirks" and trust me...any child on the spectrum is not a "neurotypical person (aka normal) " as autistics call "us". They are indeed different in many ways. I personally don't see anything wrong with that but I am getting the impression this mom does. She continues to try to place her son into so many "normal and social" activities that he seems to be overloaded now as he is losing interest in playing baseball all the time or doing some of the other things he has always been doing. SO many clubs and outings he is involved in. I know how easy you can get overloaded as any child can who is on the spectrum. To me this sounds like way too much. She would deny it of course and just say "her son is high functioning and is normal and can and always has done all these things before....etc...etc...etc."

Meanwhile he continues to have problems and emotional instability especially recently. He is approaching that age where kids can be very cruel and start to notice when another child is "different" and will move their own way and leave their former friend in the dust. This mom has kept her son's diagnosis so private that it almost sounds like she is ashamed of it. And by her continuing to pretend her son is normal by involving him in so many extracurricular activities and such, is only fooling herself in the long run. I imagine her son will continue to change and become more noticeably different. It always seems to happen and even if they are mainstreamed. SO I told her I felt he might be at that age where he would "want" to know what is wrong with him so he could better understand why he does some of the things he does sometimes. Course she disagrees with that completely and I wonder if her son will ever know about his disorders.

I just always hope and pray I can show you that no matter what disorders you face in your lifetime that you are still very much OKAY and WONDERFUL and a fully abled body person! You will be about as "normal" as anyone else out here trust me!! I don't find it necessary to smash you into the same socially acceptable mold that everyone else thinks you must fit into to make it in society. I KNOW you will be successful and able to make it in our world. I want to let YOU pick some things YOU might be interested in doing and do them. I don't want to stick you into things to keep you busy but perhaps you are not interested in...just to keep you social and active and blended in with everyone else. You are usually in total misery inside when we try to get you to do things you really cannot handle.

SO I just pray that this other mom opens her eyes and begins to see what she is doing. I think she is placing so many expectations on her son to be "normal" that he is beginning to fall behind and probably senses he is letting MOMMY down. This puts even more pressure on him. Can I tell her this? No...she won't read it let alone have the words sink in to maybe realize they could possibly be true and make some changes. I pray I never turn into that type of mom. I pray you will always know I ACCEPT you JUST THE WAY YOU ARE and in fact cannot imagine ever having you any other way! I KNOW and trust YOU as you are SO IN TUNE with your own body and well being. I KNOW you will make good choices and be successful in your lifetime. AND IF you struggle I will be there to help pick you back up and set you back down on the right path.

This is another reason why I personally think it is best you are homeschooled. A lot of the things the other mom's son is starting to experience in school is what eventually happens to any child who is "different". Kids can be kids and be very very cruel and mean. It is counter-productive I think to continually force a child to be exposed to that. Here at home you are praised and given confidence that in the public school setting they seemed to tear down. It was like they were trying to break your spirit and MAKE YOU BECOME like the rest of them. Sorry but I will never let that happen.

Some day you may very well be able to handle school in a public setting. But if not so what. I have talked to so many autistic adults who now looking back wish they could have somehow avoided the public school setting altogether too. They basically went through hell especially in middle school years and high school years.

So Noah please always know I love you for YOU and you don't have to be a certain way for me to love you any more than I possibly do now. You don't have any magic numbers of activities to be involved in. You don't have to blend in so well with all the other kids you are never noticed as being different. You don't always have to STOP being YOU because you are too loud in public or around family members. You don't have to act or look a certain way to be accepted by me and your daddy. There is no criteria you have to MEET. Just be you!

I will love you forever,


Friday, May 27, 2005

Memories of my Noah when he was little

Dear Noah:

Last night you brought up Heaven. You had finished watching a movie with me "Raising Helen"....and once in bed you said "Mommy, I am already in Heaven." I asked "what?" and you repeated it. You said something about the kids' parents in the movie being in Heaven...and you said when you go to sleep you are in Heaven. I explained that dying was a little different than just going to sleep. That you never wake up, quit breathing, etc. You listened. I then explained how people go to Heaven when they die...and you started bawling and said "but what about me?" "I want to go to Heaven too". SO I explained the entire process to you and how people go to Heaven and that YOU WOULD go to Heaven. You settled down and then again kept saying "I am already in Heaven." I asked "what...when you are awake you are in Heaven?" You said "no...when I go to sleep." That you dream of Heaven. I asked you if you ever see God. You said yes. I asked what he looked like. You said He "has on a long white robe and sandals that are really big!" I asked if God ever talked to you. You said yes. I asked you what He said to you. You said " He says I love you." I asked if you ever tell him anything. You said "I love you too."

TOO SWEET for words Noah...that is what you are!

I love you very very much!


Thursday, May 26, 2005

Dear Noah:

You made a friend with the little 3 year old boy downstairs that just moved in and his 1 year old brother. You all played and talked to each other back and forth from you up here and them down below. They wanted you to come down to play with them and I even heard their daddy tell you to come in and ask your mommy if it would be okay. THEN I heard you want the little boy to come up here. I think it would be great if you could all play together....but I also worry. It would have to be only outside where I can see and hear everything going on practically every second. I mean the boy down there is only 3 and his brother only 1. I think you would play fine but if they happened to do something to "set you off" then what? USUALLY around smaller younger kids you do very well. BUT we also don't really know these people yet. They only moved in a couple of days ago. I think so far they appear to be okay....but then sometimes looks can be deceiving. What a world we live in huh? Hard enough for US to try to figure everything out without you. You told me this "I think the strangers downstairs are good strangers because they have 2 little boys!". I only wish it were always that simple. BUT I am thinking you are probably right too and perhaps you will all become very good friends. Course then what when the child starts school or moves? OR WE move? (you know working at the Children's Hospital you hear horror stories too about kids coming across guns to play with). While I know WE don't have any here etc...even if another parent told me they did not either I think I would always worry about that. SO...we will see how things go.

Last night however you already informed me that today, May 26, 2005 was the day you were going to go downstairs and play with Isaiah.

I love you my angel boy!


Wednesday, May 25, 2005

This was Noah BEFORE the EKG....

Noah getting upset during his EKG

Dear Noah:

Much cooler today....reminds me of early fall or spring. Kind of cloudy and only to be in the 60s. Much different than the past week or so. I was checking out the story of one of our patients who died from CF this past week. It is amazing to me how many of these kids do so much during their lives. Makes you kind of feel bad for not doing all that much with your own if you think about it.

We should all live our lives to their fullest and savor every moment in time as they are fleeting!

With that said Noah my little man....Mommy loves you to the moon and back again!

Tuesday, May 24, 2005

Dear Noah:

Okay so yellow was not a good color choice for this blog! Sorry about that.

I have been thinking about you a lot Noah. Wondering about where you will be in the future. Wondering how much support you might end up needing or if you will need any as you get older? I still have to help you get dressed at least your shirts in the mornings and at night. I still need to help you do a lot of things. While I don't mind I wonder if you will always have things you will need help doing in your life?

This week I am going to have you help me do the laundry and cooking and dishes...etc. You love to help and are a great helper! I want you to learn how to do basic things and you pretty much already know them anyway as you have already done them many times.

Anyway....I love you Noah Wesley!


Dear Noah:

Testing out yellow on this blog

Monday, May 23, 2005

Dear Noah:

Wow. Just got back from your cardiology visit. Talk about trauma and drama! I had explained what might happen to you even before we went. We went over the heart and studied taking pulses and doing echocardiograms and EKGs at home in school. However, even with all that preparation you still freaked out in the doctor's office. You keep thinking back to when you had to go to the lab and have those EIGHT tubes of blood drawn. I guess you kept thinking someone was going to stick you with something or hurt you. We kept trying to explain things to you but you cried and screamed and cried some more and would calm down for a short time before the entire process would start all over again. It is hard to make you understand things to begin with let alone when you are upset and not calming down. We finally got the EKG done. The doctor came in and you freaked about him just listening to your heart. You freaked about your blood pressure. You had a hard time today with your entire visit there.

THANKFULLY they did not hear a heart murmur today and this doc feels your heart is probably just fine. SO that is good. No more visits like this one. A couple of weeks ago before the blood draw however you were hugging your docs and nurses and calling them your BUDDIES. Not sure if you will think that way again though you still have some favorites. Now I am getting a bit worried about speech therapy, occupational therapy and physical therapy. You have done these things all very well in the past...but....they were done in the school setting and not in a clinic setting. Hopefully you will not have a hard time with all those in the future.

I think I am going to cancel your eye doctor visit. You have better than normal vision we already know that. They only wanted to assess you squinting and/or you looking at things sometimes peripherally. I personally am not worried about that and know it is part of autism. So there...so what. Why go through even more trauma just to find out what we already know.

Makes you almost wish we had never taken you for the genetic blood tests and 8 tubes of blood draw. I mean it would not really change the outcome of anything anyway. They said it was to rule things out or in I guess. But so what? Nothing would be handled differently than it is now anyway. That was one reason why I did NOT choose to have an amniocentesis during my pregnancy with you. It would not change anything as I would have had you regardless of whether or not something was wrong with you. They try to tell you it is just so the hospital staff can be more prepared in advance if you will need something special after your birth. I personally think they do that to offer some women a way out of having a child that is perhaps less than perfect or even severely disabled or deformed.

Anyway..you are off filming now to calm down.

I still love you Noah even though you had a very hard time today at the doctor's office. I know you worry we think you acted badly. BUT it was how you felt and you at least showed us very well how you were feeling about today's visit.



Dear Noah:

We watched "Autism is a World" last night on CNN. Was a bit disappointed in it. While it revealed ONE person's story I think CNN was trying to make a correlation and show this was how ALL autistics are. Maybe they were not but we took it that way. Sue Rubin's story was "her" story. Not "all" autistics have her degree of communication problems. Some have more. Some have less. Some would hardly notice any problems with communication at all in public. AND NOT all autistics will need one-on-one support their entire lives. Many go on to live very normal successful fulfilling lives on their own where they work and support themselves. They have learned over time how to take care of themselves, etc. Perhaps one thing this documentary proved was how important "early" intervention is to at least provide a child with autism the basics on coping in our world. The longer you wait to provide that the longer it takes for that child to have any ability to cope in our world on their own. Unfortunately some children never get any help and probably end up in some institution somewhere.

And there are some autistics who are severely mentally retarded. Some have ABOVE AVERAGE intelligence and are even in the SUPERIOR range in many areas. I think everyone tends to lump autistics in one category and unfortunately that should not be the case just like all other people are not lumped into one category and likeness. Autistics are indeed all different. Many have similar traits but in essence they end up being different from each other and have varying degrees of their disorder and traits and "quirks".

So...while the documentary was good and provided much information into Sue Rubin's world....everyone has to remember that is not every autistic person's world.

Sunday, May 22, 2005

Noah's Birthday song and cake 2004

Dear Noah:

Well CNN Presents tonight is to have a show on about an adult woman living with her autism. Sounds interesting...so we are planning on watching it.

Been super hot here. WAY too hot for this time of year. SO thankful to have air conditioning!

We have next week's school lessons planned out for you Noah. You even wanted to do some school today. I think taking a few days off makes you really miss it. You would rather do it nearly every day which is fine with me!

Love you my sweetie pie!


Saturday, May 21, 2005

Mommy and Noah testing

Noah thinks this video clip is funny!

Dear Noah:

We watched the Muppet's "Wizard of Oz" show on CBS last night. I think it was CBS. It was cute.....they changed the story around and you got a HUGE kick out of that! It was funny in many spots but you had to run out of the room during some spots too as you said it scared you or you did not like it.

You have been doing pretty well but have had some problems at the parks lately. MOST times you enjoy being around other kids and people. Lately however you see someone coming close to our area or just walking by and you "freak out" and say "we have to go....someone is coming!!". "Too many people are coming!" "I need to go now!"

Not exactly sure why this bothers you so much from time to time but you will go on and on till we either leave or calm you enough ONLY if the person ends up not coming to the park but walking by. Sometimes too many kids in the park bother you. Sometimes it doesn't phase you at all. Lately it has been a huge issue and so we try to get to the park really early....way before anyone else is there or only a couple of kids. That way it won't bother you and you can have fun ....plus it is cooler.

Today we were invited to go to your half sister's son's birthday part at a PARK of all places. Problem is the park she chose is a HUGE park that is SUPER busy all the time....especially on weekends! It won't be till later which will be way too hot for you. I already know by your history this week at the parks there is NO way you will be able to handle that today. SO I told you daddy to tell Kelley we cannot come to the park today but will get together with her and her kids another day "through the week" at another park when it will be cooler and less crowded. AND I told daddy she would just have to "get it" and understand that. It is tiring always trying to explain to someone why certain things bother you and you just cannot tolerate them. I don't believe in forcing you to do things that will only make you miserable. You are still participating in many social events and outings without being miserable. I don't think it is a requirement to go to every single event you cannot handle in order to be social.

But at the same time I wonder about you as you get older. Who will you play with or what you will do? Your daddy and I play with you now and I hope that will always be something you like and enjoy. I pray you don't go through some of the typical behaviors some kids do where they don't want much to do with their parents at all. BUT if you are still being homeschooled and we don't get you involved in other things where will you meet friends to do things with? I guess that is where the social classes come in handy. They get together at least once per week where you can meet other kids....and kids like you....to do things with etc. I also think you will expand on your interests as you get older and doing things you enjoy will keep you busy. Eventually I know you have to learn how to handle situations that might make you uncomfortable. We are slowly doing that even now. But I guess I am still adamant about not making you go through total agonizing misery just to have one more social event notch under your belt.

If we lived closer to your cousin Audrey I know you would play with her a lot. And you cousin Alex. Course I guess again that is limited to "time" to a degree. Everyone grows up and gets older and your likes and dislikes change. While you may enjoy it a lot now someone in the three may not in the future. Audrey may want to play more with more girls as she gets older. Alex is a lot older than you already and he will probably not be interested in playing with a little kid as he gets older. BUT whenever we are around family it never seems to be that way. We include the little kids in with whatever the big kids are doing.

But we live 1200 miles away from all that kind of activity. We love living here in Colorado but that is a downside. Probably the only one I can think of but still. We don't do much with Keith's side of the family here in Colorado....and the only kids available that you could play with (Isaak and Erik) are a bit rough. Well...they can be. It all tends to be too over-stimulating for you and you end up having a very hard time. Plus once again I think Kelley only asked us to come get together today because her mom and her side of the family are all on vacation or gone and not available to have a party. Otherwise...I think another year would have gone by where none of us had been invited to anything. I won't get into it here but this is not right and something your half siblings do all the time! It is not right how they treat daddy.

Well...I need to get some work done. I am sure you will be showing daddy the video clips you took of me taking a couple minute cat nap snoring!

I love you more than you can possibly ever know!


Dear Noah:

I am way too tired the last couple of days. Chronic lack of sleep is catching up with me. Makes it dangerous! I don't want to be falling asleep while it is just you and me here. I did doze off a couple of SECONDS....yes...only seconds yesterday and somehow ended up still SNORING and what did you do? You grabbed my digital video camera and RECORDED me lying there snoring and breathing LOUDLY. It is HILARIOUS!

You are my stinker bubble!

I love you very very very very very very much!


Wednesday, May 18, 2005

Early Signs Noah Had

1)Inability to deal with the "in between" situation of anything (Noah had a very difficult time with changes in his routine in preschool or at home and in Kindergarten. Initially he would break out in temper tantrums and push or shove things or try to bite people and NOT do whatever was required of him-he has progressed and now if he has a temper tantrum it is short-lived-he has learned to calm down first and then try to handle things and that changes are okay)
2)Attachments to persons and/or normal childhood things (stuffed animals, blanket) is not there. The child is more attached to specific, favorite often unusual items and can play with them for hours (Noah never really seemed attached to anything as an infant like some kids would be-as he got older he became attached to a bear...but it was mostly things like pillows, pinwheels he could spin, calculator, or computer games as he can play all day long on his PC by himself if we let him-though there are some days he does not want anything to do with it)
3)Attention focus (goes both ways-can have amazing focus for specific things and yet none at all for others) (see above-he has tremendous focus for things that interest him-and little for things that don't)
4)Biting or gnawing (mostly objects or people though they can bite themselves too)(Noah has gone through stages where he was gnawing on all kinds of things even things that should not be chewed on-then he has gone through spells where in frustration he would bite or try to bite people)
5)Blank stares (this happens a lot with Noah and especially on days after he has had tremendous overload-I was afraid he was having seizures but the physician did not seem to think so)
6)Constant running back and forth or jumping/spinning to get sensory stimulation via feet (no one quite gets this until you LIVE with someone with autism-Noah will sometimes walk around in circles in the living room before bedtime over and over and over or up and down the hall back and forth over and over and over as it seems to calm him. He is always jumping or spinning as he walks or body slamming into walls as he walks. I rarely see him just walk in a line anywhere with anyone without some kind of constant jerking movement)
7)Does not always respond to name (sometimes Noah would not respond to his name at all-if he was into something and was focused on it he would never answer-he does very well with this now)
8)Echolalia (repetition of words)(When we used to take Noah to the park when he was little he would hear other kids talking and saw how they acted on the playground and he would repeat EVERYHING he heard and not once but over and over and over and over)
9)Extreme or unusual sensitivity to light and/or sound (child squints a lot or puts hands over ears a lot)(Noah does both of these things a lot-but his hearing is probably even more sensitive than his sensitivity to light)
10)Fascination with captions/credits at the end of a movie-also likes to rewind or fast forward videos over and over (Noah can have a fit if you turn a movie off before the credits are finished)
11)Hand flapping (Noah does this when he gets extremely excited about something. He hand flaps all the time when he plays on the piano
12)Hyperactivity (Noah has extreme activity to be sure though he can have periods where he will be quiet)
13)Impaired motor function (Noah had delays in fine and gross motor skills)
14)Inappropriate play-lack of pretend play (Noah NEVER had pretend play-and if you tried to pretend play he did not "get it"-we were not really aware of this till he started preschool and they brought it to our attention and we realized he indeed had NO pretend play ability-this was something we worked with the preschool on and now at 6 years of age he is finally pretend playing!)
15)No flexibility-has trouble with changes in routine (used to be a HUGE issue for Noah but he does much better now with changes in his routine-he only gets upset now if the change will make things louder or over stimulating-such as Easter service at Church when it was almost too much for him to handle with the extra people and loud music and talking and noise)
16)Does not point with finger (Noah never pointed with his finger-we had to teach him to do that)
17)Lack of sensitivity to pain-0r over sensitivity to something that should not really be painful (sometimes something that should hurt Noah does not phase him at all-other times the slightest tiniest thing will set him off crying)
18)Lack of social skills and boundaries (HUGE issue for Noah-he does not "get" most social cues or skills at all and he definitely has a problem with boundaries)
19)Leg banging, body shaking-to get sensory stimulation (always moving something somewhere it seems-will even throw himself on the floor sometimes over and over and laughs)
20)Limited food choices (ongoing issues for Noah-has extreme pickiness to eating)
21)loss of language, lack of language development and use of nonsense language (Noah has speech language delay and receptive and expressive language delays)
22)no fear of danger (again these are extreme issues for Noah-has had to be taught stranger danger- and that there are certain things you just do not do-like climbing on the nightstand in the bedroom and jumping off)
23)Must have order (Noah is a bit picky about where things are as everything has to be put back where it belongs..but that is also what I have taught him from day one of life...wish I could say the same about his daddy!)
24)Potty training does not come easily (HUGE issue for Noah-has potty training down at 5 1/2 years of age but still needs help with wiping after bowel movements)
25)Pushing forehead along floor with butt in air (Noah did this a lot as a toddler-the preschool was worried about this and that is when we became more aware of it happening-not sure why but perhaps for the sensory input)
26)Red cheeks (they say this can be a sign of allergies-Noah has none I am aware of but he can get red cheeks..course his Mommy has flushed cheeks all the time too)
27)Removes bandaids or anything that does not belong on the skin (used to never want anything like that on his body-now will tolerate fun bandaids)
28)Likes routine (as above)
29)Screaming or screeching many times throughout the day (Noah makes sounds all day long off and on over and over-they seem to calm him like meditation
30)Self injurious behavior (Noah would sometimes bite himself just to see what it felt like-pulled his hair-bites his nails including his toe nails now really short)
31)Sense of touch is heightened-sensitivity to textures (was a huge issue in preschool-I could have cared less whether he wanted to touch shaving cream or sandpaper, paint and sand, etc,. but the staff was worried about it-they worked with him getting used to having things on his hands and he is now much better and does not mind getting a little dirty in different textures)
32)Seeks sensory stimulation (always jumping, running, spinning, looking for vertigo effect) (key word for me here is "always"-haha)
33)Sideways glancing (Noah has always done this and still does)
34)Speech delay (yep)
35)Staring at ceiling fans and lights or anything that spins (yep-fascinated for hours)
36)Tantrums and violent outbursts coming out of nowhere (yep but less now)
37)Loner syndrome-can play alone for hours (yep-will say "okay Mommy go away now)
38)perfect baby (yep)
39)toilet flushing and fascination with toilets (YES YES YES....this went on for a long time and he is still fascinated with toilets and restrooms and flushing!)

Tuesday, May 17, 2005

Dear Noah:

You have had a very very trying day today Noah. And it is only 2:15 p.m.! First of all because things have been a bit hectic lately around here you got to bed a lot later than normal. We got a phone call last night regarding Floyd and Mommy was on the phone for 90 minutes and that was the same time you should have gone on to bed. SO needless to say you went to bed MUCH later than normal and I told you you would have to get at least 10 hours of sleep and to sleep in the next day. You are pretty good about always making sure to get your 10 hours of sleep in. We have found through experience you do VERY well with 10 hours of sleep. If you do NOT get the 10 hours for whatever reason the next day is extremely trying for you. Hence all your problems I think today. I do give you credit for sleeping in however till 8:13 a.m. That was over 9 hours and not bad. But you have had several nights in a row where you have gone to bed about an hour later than normal but then the next day you do not always sleep in for that extra hour. Over a few days it really adds up and you act completely frustrated at the littlest things.

We set out to the park first today. You were crying over EVERYTHING today. It started out well and you were playing well. Then some little kid came up and tried to push you away from the piano at the park. You unfortunately lost it and tried to push him away rather than using words as that is your first reaction. We are slowly trying to teach you to "tell someone" what bothers you and not to "lash out" instead. You do well for the most part and rarely push or shove anyone anymore. You started crying and pointed to this little kid and said "he came up and pushed me and is not going to play Twinkle Twinkle Little Star" (cause you were). This was a tiny kid though and you still sometimes don't always understand you cannot act that way to anyone but especially around other "tiny and younger kids" who don't know better. So you got him off you and then threw his sand bucket and shovel as far away from you as you could toss it. You were bawling like crazy. I explained as calmly as I could that this little kid did not know any better and to go pick up his sand bucket and shovel and place it back down in front of him so he could use it. AND to remember that you were a lot BIGGER than other tiny kids and that they did not know better cause they were so little but that you were a BIG boy now and needed to try to remember what you were to do in situations like that. You calmed down but it did not last long. Then you saw a chain had come off a playground thing that you walk across and you became extremely upset about that. Once Daddy realized he could not fix it you bawled and bawled and could not let it go. I calmly explained to you again that it was "okay" and that you might have even "more fun" because the thing you stand on would move around even more now. You went over and plopped down in front of the thing and tried to attach the chain yourself. WHICH only frustrated you more when you realized it was not going to happen.

You cried and cried and I was trying to calm you down and finally told you it was "okay". To "let it go". It was okay to do something else or to even "take a break" from the park. You were so upset over so many little things we finally left. We decided to head over to Super Target to do some shopping as Grandpa Lincoln sent you some money. Once there you did pretty well. But you complained about your leg hurting...that right knee really bothers you a lot. You have fallen on it several times and just out of the blue complain about it hurting to the point where you say "I can't walk and I need a wheelchair" in between sobbing. And I mean SOBBING. We finally took you to the doctor a few weeks ago and they THINK perhaps it is a stretched hamstring muscle and that eventually your physical therapy will help that problem. You have such hypotonia (low muscle tone) that it does not help the situation any.

While in Target however you were spinning down the aisles like you so as you are excited and happy and you slipped on their shiny waxed floor and fell ....RIGHT ON THAT SAME KNEE....you cried and cried and cried again. I kissed it and you got yourself together ...but again only for a short time. You cried again when it came time to walk. Wanted Daddy to carry you. You complained even about standing on the end of the shopping cart. You yawned repeatedly.

So we are home now. Got you some of your favorite Dominos pizza for lunch. You came around the table and WHAM...HIT that SAME knee again. All we heard was the thud and you saying "not again!" and you starting to cry all over again.

After lunch you said you could not walk...started to cry....then sobbing again said you could not walk and would need a wheelchair. I told you you would have to "rest" your leg a couple of days. I gave you some Motrin and will put a cold ice pack thing on it in a bit as soon as it freezes up a bit. I got you a new PC game today so you are in your room now playing that. I am going to try to get you to take a nap. Regardless..tonight it will be bedtime at 8:30 or 9:00 PM NO LATER!

Floyd we found out developed a blocked shunt which led to an infection and meningitis. No wonder he was so sick. That did not help his already existing hydrocephalus one bit. We think we found a personal friend/advocate who might be able to help him take care of his affairs. I hope so. He is going to need all the help he can get.

So....much to do on this end as usual. I think we need to give you some downtime for the next few days and let you recoup your emotional status and physical status. Today we will soak you in a nice warm tub of water too..which will also help you feel better.

Okay...I need to go and clean up the lunch dishes. Daddy and I had chicken breasts stuffed with broccoli and cheese which you wanted nothing to do with. I am going to start making you at least TASTE a real vegetable in order to get your TWO FOR TUESDAY specials every week from Dominos. I think that is only fair and perhaps you will actually find one you like enough to eat more than a taste of.



Monday, May 16, 2005

My Dear Noah:

Not much new today I guess. I had to stay over at work for a meeting before I could come home. Made for a long morning since I had been there most of the night too. You brighten my day though and I so look forward to being with you and seeing you come running to say "mommy is home...MOMMY IS HOME" when I come through that door!

Today you are excited as it hit 82 degrees! You love temperatures and their numbers so you have looked forward to seeing it hit 80!

Otherwise Mommy is a bit tired tonight, fighting off a headache and a bit stressed w ith all the stuff going on with our neighbor Floyd who we found out today is in the Neurology ICU. So he had to be pretty bad off or a lot worse then he ever thought he was. Not sure how he thought he was fine or how he fooled so many colleagues into believing he was "fine". Talk about being in denial.

Anyway my little sweetie pie. You came out today all upset cause your Roller Coaster Deluxe cd had cracked. I thought I had a copy but could not find it. I tried copying all th files but apparently I missed something. So you are now playing your other Roller Coaster Tycoon 2 game. We will go get you a replacement Roller Coaster Tycoon Deluxe tomorrow if we can find it. I think Super Target had them on sale for 10.00!

Okay....more another time when I have a lot more energy to spare.

I love you to the moon and back my little man!


Sunday, May 15, 2005

Noah Eating BK chicken nuggets


Bulk Buying Burger King Chicken Nuggets??

I wonder if anyone knows if I can BULK BUY chicken nuggets from Burger King? Seems that is the ONLY kind of chicken nugget you will eat these days and since that is about the "main" staple of your diet I need to think of something. I guess I will need to call a local BK and talk to the manager. Course this will only work if they come frozen and only require heating and not frying. I don't think they fry them. They look and tasted baked. SO that would work if they are frozen and are just like all the other frozen nuggets out there....you can pop them in the microwave or oven and WHAM....lunch! As you would say "they are perfect" or "oh my favorite!"

Dear Noah:

I was re-reading some of my earlier posts and am now thinking I am a bit too passionate at times. That is a good way to say it I guess..hahahah. "PASSIONATE"...sounds better than losing my temper or something.

Anyway............I don't want you or anyone else to get the wrong idea about my feelings on teachers. I personally LOVE most teachers and think they do a great job. However....we have found that "most" in the public school setting have no clue what to do with autistic spectrum kids. There are even some who think they do but they just don't ever seem to quite "get it". So....there is a serious lack in special education teachers to begin with I know and there seems to be "none" who hardly specialize in autism or Asperger syndrome or at least the grand spectrum autistic spectrum disorder. That would cover everything. AND I have talked to a lot of other people and they all seem to say the same things about their experiences with their public schools. I have heard one success story so far in the past let's see.......3-4 years? That does not mean there are not more out there as I am sure there are. We just have not come across them.

So anyway.....I tend to get a bit mouthy sometimes...and probably pretty defensive when it comes to you Noah as I have to be "your advocate" right now. I need to learn however that sometimes you get more when you sweeten the pot with honey than you do with lemons!

Love you my little sweetie pie!