Tuesday, December 25, 2012

Wow as we say goodbye to another year 2012 is about to close, we celebrate Christmas! Happy Birthday Jesus!! I was blessed to wake up to another day after I had stayed up late setting everything up for the boys. We stayed in a normal routine, but the boys we're super excited. This year was a lot different then previous years. Thomas Jeremiah and Malcolm we're all over stimulated by the change but Thomas AMAZED me after all the rumble was over.. he played. Now you may not understand what I mean by that, so let me explain. Getting toys has meant nothing to my boys, they open they break things they would loose interest right away, or touch it once - it is hard to buy for a special needs child. This year, Thomas PLAYED with two toys .. without words but he played crashing and driving them I took a lot of pictures and cried as I watched my 6 year old do something so typical it blew my mind. Words cannot express how thankful I was for such a progression, such a moment, for me to be able to see it as well!
 
My heart goes out to all the shooting victims, I prayed a little harder today for peace in the heart of all those effected. I could not imagine being in that situation. God bless their souls. 
 
I think that as I lay my head down tonight my biggest thought is how far my son Thomas has come. Autism does not define who anyone is, especially him. He defines Autism .. ..
 
Count your blessings .. tomorrow is never promised!
 
 

Life has kept me away

So since I last blogged a lot has happened. Thomas is 6! Malcolm is 2! Jeremiah is 4 & 1/2 and they are driving me insane while blessing me more each day at the same time!
 
 Malcolm's MRI results came back he had no tumor and was undiagnosed with auditory neuropathy he was found to have no cohclear nerve connecting his ear to his brain for him to hear, so essentialy he is half deaf BUT hears great from his right ear, none on his left. So, we now have a bit of answers some things are still in question and he is still having other things done to figure other things out! He went to kluge and was evaluated, he is presenting just like my Jeremiah did but a bit worse at this age. I was thinking Malcolm wouldnt fall on the spectrum but I had known for a long time that he just might because of all his issues. One day at a time, heck .. it is actually one minute at a time here!
 
Our in home aide who works with the boys is amazing, she is sitll with us and I am so thankful for her, words cannot express how blessed I am to have someone who really loves their job and does it so well. She makes life so much easier on me.
 
Matt lost his job back in November, it has been really hard on our family but we are hanging in till he finds something else. I started selling 31 and am LOVING it! I had a really great month this month and am super blessed to be bringing in some income!

Friday, October 19, 2012

What is it to you?

What is a disability to you? This is what the dictionary says:

DICTIONARY

disability

Definition

dis·a·bil·i·ty
dis·a·bil·i·ties Plural

NOUN

1.
restricted capability to perform particular activities: an inability to perform some or all of the tasks of daily life
2.
medical condition restricting activities: a medically diagnosed condition that makes it difficult to engage in the activities of daily life
3.
payment to person with inability: a sum of money paid to somebody, usually on a monthly basis, by a government agency or insurance company because he or she is unable to work
4.
legal disqualifier: something that causes somebody to be regarded in law as ineligible to perform a specific transaction
 
I am going to say, someone most likely a child and someone I do not know posted a very ugly comment on my blog. I would like to say first and for most that your words could never hurt me but I more feel sorry for someone who has to seriously struggling with them selves. Anyways I thought I would put that out there. Now look at some of these other definitions and ponder on that awhile.
 

Autism

From Wikipedia, the free encyclopedia
Jump to: navigation, search
Autism
Classification and external resources
Young red-haired boy facing away from camera, stacking a seventh can atop a column of six food cans on the kitchen floor. An open pantry contains many more cans.
Repetitively stacking or lining up objects is a behavior sometimes associated with individuals with autism.
ICD-10F84.0
ICD-9299.00
OMIM209850
DiseasesDB1142
MedlinePlus001526
eMedicinemed/3202 ped/180
MeSHD001321
GeneReviews
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.[3] It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and pervasive developmental disorder, not otherwise specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.[4]
Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by rare mutations, or by rare combinations of common genetic variants.[5] In rare cases, autism is strongly associated with agents that cause birth defects.[6] Controversies surround other proposed environmental causes, such as heavy metals, pesticides or childhood vaccines;[7] the vaccine hypotheses are biologically implausible and lack convincing scientific evidence.[8] The prevalence of autism is about 1–2 per 1,000 people worldwide, and the Centers for Disease Control and Prevention (CDC) report 11 per 1,000 children in the United States are diagnosed with ASD as of 2008.[7][9][10] The number of people diagnosed with autism has increased dramatically since the 1980s, partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.[11]
Parents usually notice signs in the first two years of their child's life.[12] The signs usually develop gradually, but some autistic children first develop more normally and then regress.[13] Early behavioral or cognitive intervention can help autistic children gain self-care, social, and communication skills.[12] Although there is no known cure,[12] there have been reported cases of children who recovered.[14] Not many children with autism live independently after reaching adulthood, though some become successful.[15] An autistic culture has developed, with some individuals seeking a cure and others believing autism should be accepted as a difference and not treated as a disorder.[16]

Contents

[hide]

Characteristics

Autism is a highly variable neurodevelopmental disorder[17] that first appears during infancy or childhood, and generally follows a steady course without remission.[18] Overt symptoms gradually begin after the age of six months, become established by age two or three years,[19] and tend to continue through adulthood, although often in more muted form.[20] It is distinguished not by a single symptom, but by a characteristic triad of symptoms: impairments in social interaction; impairments in communication; and restricted interests and repetitive behavior. Other aspects, such as atypical eating, are also common but are not essential for diagnosis.[21] Autism's individual symptoms occur in the general population and appear not to associate highly, without a sharp line separating pathologically severe from common traits.[22]

Social development

Social deficits distinguish autism and the related autism spectrum disorders (ASD; see Classification) from other developmental disorders.[20] People with autism have social impairments and often lack the intuition about others that many people take for granted. Noted autistic Temple Grandin described her inability to understand the social communication of neurotypicals, or people with normal neural development, as leaving her feeling "like an anthropologist on Mars".[23]
Unusual social development becomes apparent early in childhood. Autistic infants show less attention to social stimuli, smile and look at others less often, and respond less to their own name. Autistic toddlers differ more strikingly from social norms; for example, they have less eye contact and turn taking, and do not have the ability to use simple movements to express themselves, such as the deficiency to point at things.[24] Three- to five-year-old autistic children are less likely to exhibit social understanding, approach others spontaneously, imitate and respond to emotions, communicate nonverbally, and take turns with others. However, they do form attachments to their primary caregivers.[25] Most autistic children display moderately less attachment security than non-autistic children, although this difference disappears in children with higher mental development or less severe ASD.[26] Older children and adults with ASD perform worse on tests of face and emotion recognition.[27]
Children with high-functioning autism suffer from more intense and frequent loneliness compared to non-autistic peers, despite the common belief that children with autism prefer to be alone. Making and maintaining friendships often proves to be difficult for those with autism. For them, the quality of friendships, not the number of friends, predicts how lonely they feel. Functional friendships, such as those resulting in invitations to parties, may affect the quality of life more deeply.[28]
There are many anecdotal reports, but few systematic studies, of aggression and violence in individuals with ASD. The limited data suggest that, in children with mental retardation, autism is associated with aggression, destruction of property, and tantrums. A 2007 study interviewed parents of 67 children with ASD and reported that about two-thirds of the children had periods of severe tantrums and about one-third had a history of aggression, with tantrums significantly more common than in non-autistic children with language impairments.[29] A 2008 Swedish study found that, of individuals aged 15 or older discharged from hospital with a diagnosis of ASD, those who committed violent crimes were significantly more likely to have other psychopathological conditions such as psychosis.[30]

Communication

About a third to a half of individuals with autism do not develop enough natural speech to meet their daily communication needs.[31] Differences in communication may be present from the first year of life, and may include delayed onset of babbling, unusual gestures, diminished responsiveness, and vocal patterns that are not synchronized with the caregiver. In the second and third years, autistic children have less frequent and less diverse babbling, consonants, words, and word combinations; their gestures are less often integrated with words. Autistic children are less likely to make requests or share experiences, and are more likely to simply repeat others' words (echolalia)[32][33] or reverse pronouns.[34] Joint attention seems to be necessary for functional speech, and deficits in joint attention seem to distinguish infants with ASD:[4] for example, they may look at a pointing hand instead of the pointed-at object,[24][33] and they consistently fail to point at objects in order to comment on or share an experience.[4] Autistic children may have difficulty with imaginative play and with developing symbols into language.[32][33]
In a pair of studies, high-functioning autistic children aged 8–15 performed equally well as, and adults better than, individually matched controls at basic language tasks involving vocabulary and spelling. Both autistic groups performed worse than controls at complex language tasks such as figurative language, comprehension and inference. As people are often sized up initially from their basic language skills, these studies suggest that people speaking to autistic individuals are more likely to overestimate what their audience comprehends.[35]

Repetitive behavior

Autistic individuals display many forms of repetitive or restricted behavior, which the Repetitive Behavior Scale-Revised (RBS-R)[36] categorizes as follows.
Young boy asleep on a bed, facing the camera, with only the head visible and the body off-camera. On the bed behind the boy's head is a dozen or so toys carefully arranged in a line.
A young boy with autism who has arranged his toys in row
  • Stereotypy is repetitive movement, such as hand flapping, head rolling, or body rocking.
  • Compulsive behavior is intended and appears to follow rules, such as arranging objects in stacks or lines.
  • Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.
  • Ritualistic behavior involves an unvarying pattern of daily activities, such as an unchanging menu or a dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.[36]
  • Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program, toy, or game.
  • Self-injury includes movements that injure or can injure the person, such as eye poking, skin picking, hand biting, and head banging.[4] A 2007 study reported that self-injury at some point affected about 30% of children with ASD.[29]
No single repetitive or self-injurious behavior seems to be specific to autism, but only autism appears to have an elevated pattern of occurrence and severity of these behaviors.[37]

Other symptoms

Autistic individuals may have symptoms that are independent of the diagnosis, but that can affect the individual or the family.[21] An estimated 0.5% to 10% of individuals with ASD show unusual abilities, ranging from splinter skills such as the memorization of trivia to the extraordinarily rare talents of prodigious autistic savants.[38] Many individuals with ASD show superior skills in perception and attention, relative to the general population.[39] Sensory abnormalities are found in over 90% of those with autism, and are considered core features by some,[40] although there is no good evidence that sensory symptoms differentiate autism from other developmental disorders.[41] Differences are greater for under-responsivity (for example, walking into things) than for over-responsivity (for example, distress from loud noises) or for sensation seeking (for example, rhythmic movements).[42] An estimated 60%–80% of autistic people have motor signs that include poor muscle tone, poor motor planning, and toe walking;[40] deficits in motor coordination are pervasive across ASD and are greater in autism proper.[43]
Unusual eating behavior occurs in about three-quarters of children with ASD, to the extent that it was formerly a diagnostic indicator. Selectivity is the most common problem, although eating rituals and food refusal also occur;[29] this does not appear to result in malnutrition. Although some children with autism also have gastrointestinal (GI) symptoms, there is a lack of published rigorous data to support the theory that autistic children have more or different GI symptoms than usual;[44] studies report conflicting results, and the relationship between GI problems and ASD is unclear.[45]
Parents of children with ASD have higher levels of stress.[46] Siblings of children with ASD report greater admiration of and less conflict with the affected sibling than siblings of unaffected children and were similar to siblings of children with Down syndrome in these aspects of the sibling relationship. However, they reported lower levels of closeness and intimacy than siblings of children with Down syndrome; siblings of individuals with ASD have greater risk of negative well-being and poorer sibling relationships as adults.[47]
 
 
 
 

Facts about Autism


En Español
Did you know ...
  • Autism now affects 1 in 88 children and 1 in 54 boys
  • Autism prevalence figures are growing
  • More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs the nation $137 billion per year
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are four times more likely than girls to have autism
  • There is no medical detection or cure for autism

Prevalence vs. Private Funding
  • Leukemia: Affects 1 in 1,200 / Funding: $277 million
  • Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
  • Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
  • Autism: Affects 1 in 88 / Funding: $79 million

National Institutes of Health Funds Allocation
  • Total 2011 NIH budget: $30.5 billion
  • Of this, only $169 million goes directly to autism research. This represents 0.6% of total NIH funding.

Monday, October 15, 2012

In my emotion today .. a video blog..

 
This was the best way to explain today how I felt. I think I will continue video blogs.
It puts the feeling out there more in my opinon. Hope you guys enjoy.

Monday, October 8, 2012

..don't mess with mama bear's cub..

 
Last week felt like it went by so fast and here we are starting another new week a week into October already. If your friends with me on facebook, you saw  my post about Thomas getting hurt at school and it was not reported. Thomas has a bleeding disorder, a hit to the head could be very serious for him and he is not responsive to the medication they would usually give which means he would need a blood transfusion. When Thomas got home Thursday evening I noticed he had a mark on his face after checking him out I realized his whole left side of his face was bruised he had a fist like bruise on his neck and his eye was a bit swollen, when I pulled his lids down to check he had some blood in his eye. I was pissed to say the least. Thomas told me two boys pushed him down and really hurt him. When I asked him what happened he could not tell me, in fact when he got home he did not tell me anything hurt because verbally he does not always have those skills. I have to be very on it and watch because all three of my kids do not lay down or say they are sick when they are, they "behave badly". Kids on the spectrum often do not process things the same way as typical kids and especially with sensory issues. Anyways the school system never called and in fact they are pretty much denying this happened at school in so many ways. We ended up at the E.R. for a head CT because Thomas could not communicate or explain how hard he got hit in his head -sad they won't give him an aide. Thomas could have had a brain bleed for hours not only because he has safety awareness issues along with communication but how about how he expresses pain differently. I plan to pursue things to the best possible outcome for Thomas. I am no where near started on getting this taken care of.
 
We have a busy week. Monday Thomas has a hearing test, because he has been having issues hearing issues. Tuesday Thomas follows up for his head injury from school and Jeremiah is seen by his psychiatrist. Wednesday Malcolm has back to back therapies and we come home for in home for the big boys. Thursday I have to follow up with endo for my PCOS. Friday Malcolm has his MRI and ABR at UVA. I appreciate all prayers as this week with be a hard transition for everyone but especially Thomas. I know Friday we will not know any results except for the ABR. I am praying for peace of mind and in my heart.
 
I began to write this Sunday night 10/7 and it is now 10/8 Monday night. The verdict is in Thomas has not lost any hearingfrom his ear drum issues, Thank GOD! Also she tested Jeremiah because he had some concerns and he is okay as well, thank GOD! God is good, not just today but all the time for I know all my trials are what I am suppose to go through for a reason. One day everything will be clear as a bell but for n ow I will smile anyways<3
 
 

Tuesday, October 2, 2012

Cleared for Surgery!

This is Malcolm in August 2012.
 
He is my full spirited mini version of myself! He decided to come early when I was pregnant with him, guess that was his way of letting me know he would be my most on the go child, huh? Since birth Malcolm has had a lot of health/developmental issues but recently it was decided we need to do an MRI of his brain along with a repeated ABR brain stem response test. Today he was cleared for surgery we talked about what was going to happen and how many hours they would need to keep him sedated how a lot of people would be working with him because he is moving from one floor to another for two seperate things.. I just pray that this will give them a better picture of what is going on and while I won't go into great detail what they are looking for or what they could find I just ask that you please keep this really special little brother in your prayers as next Friday is the day he will go through these things. I really appreciate it!!
 
June 2012
 
July 2012
 
Our in home behavior therapist that works with my older two boys, calls me the warrior mom. I would fight till death for my kids. Let's do this, get it over with and put it behind us.
Faith guides me in this journey<3
 
 

Monday, October 1, 2012

Too much on my mind to sleep yet ...

Tomorrow is Malcolm's pre-op appointment for his MRI on October 12th along with a repeat ABR for his hearing. I never thought I would be going through this a second time as I went through an MRI with Thomas at a young age too. Praying for peace in my heart and a good appointment tomorrow, Lord knows I could use all the positive energy you have to give away ..

Thomas is thriving in academics at school, socially he is not with the other kids and struggles. Talking like a "baby" touching kicking scratching and other things have been issues this year. I feel like it is always something. When one thing seems to get better, another gets worse. That's autism for you ; up down & sideways.

Jeremiah loves his new teacher and so do I. I could not say one thing I do not like about her. He is in a class with one other full time kid. His anxiety is so high, no idea what next year will hold but I will take the positive as it is and just go with it.

How is Stephanie? I get that a lot .. how do you do it? Well , let me tell you .. these are my kids. I grew these babies in my belly, I have been on health and developmental roller coasters since they were inside my belly. I will fight, I will advocate and I will NEVER give up hope that their future will be all that it ever could with getting them what they need NOW. So how is Stephanie? I am just fine, I have good days and I have some days where reality really hits me .. most likely tomorrow will be a serious reality check but I am so settled into this life and no it's not bad so don't assume that is what I mean at all ... it's different.

I leave you with this video tonight as I hit the shower ... <3