20 things

 

My sister-in-law who by the way is awesome shared this with me. Good advice. I understand some of it doesn't apply to autism families but take what applies to your family and tweak the rest. Before people jump me that this can't be done YES it can. You stand up for yourself and others who can;t when necessary. How much better would this world be if people stood up and didn't allow the bullying and did whats right. If possible our kids need to learn as many of these as possible.

20 Things to Share with your High School and Middle School Student As Well As a Lot of Other People……………

1. Yes, your freshman year counts towards your GPA for college entrance. Screw it up and you’ll work for crap wages your whole life.

2. No means NO. In every possible circumstance.
3. Join every sport, every club, every after school activity no matter what the cost. It’s cheaper than bail.

4. Repeat after me: I am never in that much of a hurry…I am never in that much of a hurry. Now say that every time you get behind the wheel. It will save your life and that of your best friend in the seat next to you.

5. Don’t smoke pot. It ruins your short term memory. (Did I already say that?)

6. Don’t ever get a credit card and go into debt. Ever. You earn it or you live without it.

7. If I yell at you, it’s because I love you. And also, because you pissed me off. To avoid the latter, stop being an idiot.

8. Make a vivid picture inside your head of every great moment of your childhood. You’ll need those to get through adulthood.

9. Make snow angels as often as possible.

10. Stand up for those who can’t stand up for themselves.

11. Be always benevolent. Yes, that’s a word. Look it up.

12. Call me for a ride even if you are so drunk you barely know my number. I’ll probably be mad for a while but I’ll respect you for calling and I won’t kill you. Riding with someone who is drinking will.

13. Be a leader, not a follower. Unless you are doing stupid things, then follow the kid with the highest GPA.

14. Love your siblings, even when you don’t like them. Some day you will be trying to get them to take care of me in my old age. If they are mad at you, you are stuck with me.

15. I’ve been there, done that on more things than you can imagine. I’m not stupid and I know what you are doing. I was once you (times ten).

16. Work hard at everything you do. Anything worth doing is worth doing your best.

17. Cover it. (Enough said.)

18. When I tell you to clean your room, do not point at my messy room and raise your eyebrows. I’m trying to raise you to be better than me.

19. Learn to type; to budget; and to pray. All are very important.

20. Never be sedentary. Someday soon you will no longer be able to move like that.

Just an observation:

 People are always saying others do not know what to say to thoes of us that are part of the community. I think that's true but I also think there is a reason and the reason is us. Look around the community is so ready for a fight no matter how small the infraction we jump.  We fight over everything.

Someone posts a blog about being vaccine's or a treatment and the argument ensues. Can't we just read the opinion state ours (if we feel the need to) respectfully without blame. Everyone is entitled to their own opinion.

Someone says "you should try xyz" and they are jumped on by whoever doesn't agree with xyz. They are just trying to help. They are not saying "You HAVE to do XYZ". Now if they word it like that to me I HAVE to do something yeah game on, no one has to do anything.But even the wording "You HAVE to" take a step back and look at the context. The you have to may be their was of saying you really should try. They still are not trying to tell you what to do.

Someone posts a picture that they think is funny and then someone else interprets and twists that the person posting is wrong and should know better. You know sometimes we just need to take a step back and look at the whole picture. Well just as one may think the picture is funny and one may think its offensive who knows maybe the person in the picture posted it themselves because wait for it they think it's funny too. Now being a person who has had pictures taken and used in a derogatory manner, I try not to use postings that have a picture of a person that can be taken as derogatory. I know how violated and angry you feel when and if you find out. I'll stick to cute little baby pics, cats, and drawings. That's just me though.

Yesterday on my facebook page I posted a video made by Cooyon Duhon. Nobody said anything but I did lose followers immediately following. I even felt the need to post a disclaimer "Just funny. Before anyone jumps on me hes not making fun of anyone but himself. But thanks to his little video I now want boudin (that stuff is like crack in this house) and the only person I know that knows how to make it is out of the country." He takes every stereotype of Cajun's and he made a character out of him. Husband was born and raised in South Louisiana and thinks the guy is hysterical.  I also know Cooyon makes and posts the video's himself.

We need to not be so sensitive. I know easier said than done. When someone says something to us that seems wrong, they more than likely did not mean to be offensive. Even the family member that says have your tried. In most cases (there are always exceptions) they are not trying to say you don't know what you are doing they are trying to be supportive and help in the only way they can think of. So lets not jump on them and say you have no idea, that's right they have no idea but hey they are trying to help in there way. Lets save the fight for the people and things that really do have the intent on being offensive and cruel.Besides it's a lot more fun when we all get along.

picture from http://www.sspeter-paul.net/index.cfm?load=page&page=203

DSM-V Changes

       There is a lot of talk about the new definition of autism in the DSM in the media. Here's the thing not once has the media said what the "new" definition is. Which is what they like to do get people all worked up but never tell them what they are worked up over. Well here it is. I posted how it is written in the DSM-IV  and the proposed change for the DSM-V. Read it, it is almost the exact same definition just more streamlined. Yes the wording has changed a bit but it means the same thing.  I actually like the new severity scale. Having a child that's in the middle he never fit on the low-functioning or high-functioning scale now he has a place and I think this scale will actually HELP not hurt the ability to get resources for him in school.  
       I have talked to our neuropsychologist and asked how the changes will affect us. He thinks in most cases the changes will be for the better.  So lets all take a deep breath do our research talk to your doctors about your concerns. I think the media is getting everyone in a frenzy over nothing. MANY thing in the DSM-V are changing. The DSM-V goes through a overhaul every so often and things change they have too. Change is not a bad thing. We need to remember the APA is not out to get us, the insurance companies did not pay them to make these changes if they did half the things in the DSM would be gone. The APA is a peer reviewed association. Their changes are based on research. Now good or bad that's up to who is reviewing the science. Lets not put the cart before the horse.

How it is listed in the DSM-IV:

Autistic Disorder

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 impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, 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)

(d) lack of social or emotional reciprocity

(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 language

(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 one of the following:

(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, or (3) symbolic or imaginative play.

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

Proposed revision:

Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

Rational for change:

New name for category, autism spectrum disorder, which includes autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. 

• Differentiation of autism spectrum disorder from typical development and other "nonspectrum" disorders is done reliably and with validity; while distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.
• Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

Three domains become two:

1)     Social/communication deficits

2)     Fixated interests and repetitive behaviors

• Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities
• Delays in language are not unique nor universal in ASD and are more accurately considered as a factor that influences the clinical symptoms of ASD, rather than defining the ASD diagnosis
• Requiring both criteria to be completely fulfilled improves specificity of diagnosis without impairing sensitivity
• Providing examples for subdomains for a range of chronological ages and language levels increases sensitivity across severity levels from mild to more severe, while maintaining specificity with just two domains
• Decision based on literature review, expert consultations, and workgroup discussions; confirmed by the results of secondary analyses of data from CPEA and STAART, University of Michigan, Simons Simplex Collection databases

Several social/communication criteria were merged and streamlined to clarify diagnostic requirements.

• In DSM-IV, multiple criteria assess same symptom and therefore carry excessive weight in making diagnosis
• Merging social and communication domains requires new approach to criteria
• Secondary data analyses were conducted on social/communication symptoms to determine most sensitive and specific clusters of symptoms and criteria descriptions for a range of ages and language levels

Requiring two symptom manifestations for repetitive behavior and fixated interests improves specificity of the criterion without significant decrements in sensitivity. The necessity for multiple sources of information including skilled clinical observation and reports from parents/caregivers/teachers is highlighted by the need to meet a higher proportion of criteria.

The presence, via clinical observation and caregiver report, of a history of fixated interests, routines or rituals and repetitive behaviors considerably increases the stability of autism spectrum diagnoses over time and the differentiation between ASD and other disorders.

Reorganization of subdomains increases clarity and continues to provide adequate sensitivity while improving specificity through provision of examples from different age ranges and language levels.

Unusual sensory behaviors are explicitly included within a sudomain of stereotyped motor and verbal behaviors, expanding the specfication of different behaviors that can be coded within this domain, with examples particularly relevant for younger children

Autism spectrum disorder is a neurodevelopmental disorder and must be present from infancy or early childhood, but may not be detected until later because of minimal social demands and support from parents or caregivers in early years.

  
Severity Level for ASD:

Level 3 ‘Requiring very substantial support’
Social Communication
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.
Restricted interests & repetitive behaviors
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
Level 2 ‘Requiring substantial support’
Social Communication
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
Restricted interests & repetitive behaviors
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 1 ‘Requiring support’
Social Communication
Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
Restricted interests & repetitive behaviors
Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

This information was taken from http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94#  and http://leftbrainrightbrain.co.uk/2011/01/proposed-dsm5-autism-diagnostic-criteria-made-public/

Redefined again and again

I wrote this last year for another site which has since gone an overhaul and all that good stuff:

It seems that as things change we are redefined in our roles as mothers throughout life. At 19 I was a teen mom followed by 7 years as a single mom (at 25 I had my second child) an ill fated marriage that lasted 1 year then I became a divorced single mom of 3 an dv survivor (I refuse to use the word victim because I left therefore I win) Another 3 years of being a single working mom of three. And through all this I was a full time student, now I am a graduate student. Then I was a married sahm that was a change trust me. Last year we added autism mom to the list Now I may be going back to work.

Went to an interview on Wednesday and the job is mine if I want it. Wanna know what it is cemetery sales, no I am not kidding. To do this I have to get daycare lined up for porkchop who is 4. The job is willing to work with me time wise so I don't have to put the older two in daycare as well. Try explaining why you need childcare for a 12 year old and why he can't just stay home for an hour or have everything up and changed on him.

Now come summertime Lucy and Roger will have to go to daycare of some sort. The school system does have summer childcare which reminds me I need to call them. Doing the math sucks, the biggest reason why I have not gone back to work in so long is that the pay never justified it, daycare would always be more than I would make. I had an offer a while back to be an ABA therapist but the pay was min wage. I would have loved to take the job but I would go broke just to do it. This one seems doable childcare can be paid from the base pay and commissions well we will have to see how that goes.

The decision still has not been made if I am going to take the job or not. I have until Monday to make the decision. I probably will and once again I will be redefined to a working mom again.

Today's addition to my previous post:

The cemetery job didn't pan out. The amount of pay to what would be paid out for full time daycare of three kids in the summer just didn't make it work.

The question has come up again. I have a phone interview tonight for a job. Again it is in a therapy clinic as a aba instructor. I would love to be able to do this and I'm not going to get my hopes up yet. I have to make it through the initial interview first.

Not only does the question of daycare come up but this will be a juggling act, work, kids, school, therepy appointments. Oh and a car that is on its last leg. But when it comes down to it. The only way my family can get out of this hole and move up to the next level is for me to find a job where I can move up while also doing something I want to do.

Marriage

yep this is from our wedding. Nothing fancy just us.

I'm taking the lead from other blogs on marriage. What makes it? Special needs or not its hard but having a kid with ASD can make it a little harder. I get sidetracked I get stuck in my own world of therapies, doctors and IEPS sometimes and forget to just live, just be, have fun, stop planning the next move for 5 min, turn the computer and the phone off. I've seen this post in pictures and words I'll do mine for the most part in music. It just makes more sense to me.
I know you can't always get away. I mean it's been over a year since me and my husband have had a night without kids. but we make it work. Even if it's a movie from redbox and a bottle of something after the kids go to bed. You do what works.

 

 

 

Homework Battles (yep again)

When I say homework battles I'm not talking about the typical fight with the kids to do their homework, that's not a problem. The problem is the actual homework. It's like these teachers have no clue how to change the curriculum for a child with autism.

my Facebook post last night:

This is a question from Rogers homework: How does the protagonist view himself/herself in your story? Identify a page number and example from the text. His response I don't know I am not them. WHY can these teachers not get it through their think heads that he seriously cannot put himself in someone elses shoes and tell you what they think of themselves. UGGGG Oh and I was informed he is to write an essay on this as well, this should be fun.

It took us three hours and finally he came to he feels good, reason because another charter in the book said so. Ok works for me. I know I am going to get some note home that it is incomplete and not acceptable and again I will have to point out the IEP. A friend of mine said I should send a note in with the homework saying " How does the student who is incapable of taking anthers perspective feel when his teacher assigns him homework requiring him to do exactly that?" honestly how can she expect him to do something she obviously is incapable of doing herself."

I was looking at his next section of questions and they are Give a specific example of how the protagonist has changed? And what have you learned from the characters?

Those should be fun. The teacher also said she will have him reread the book to make sure he understands it before he writes the essay. wait what back up a minute. The problem is not his comprehension. He understands perfectly what he is reading you actually have him reading about 5 grades below what he can do. It's the questions you are asking you know he has problems putting himself in a fictional characters shoe and telling you how they feel. Heck the kid can't tell you how he feels a lot of the time. If you do not really understand your own feelings how can you understand and explain someone elses?

I have sent a email to his case manager to let her know that he solution of oh we will just punish him and make him reread the book is not going to solve the issue. The questions need to be reworded. So we will see what happens and if they take time to listen and work with him and his needs rather than what some curriculum states.

My Response to Germain's Comments

While Germain is not the only one to have made some not so nice comments his was the worst. This is my response. If you want to write a letter yourself email  film@ap.org  To see the stories click here, here, and here

 

To Whom It May Concern,

It saddens me to have to write an email like this. As the mother of an autistic child I have enough battles on my hand, and certainly do not need to take on any more. But I recently read a comment made by one of your AP writers that I just can not let go. When an established writer like Mr. David Germain makes a comment in a very public review that has been picked up and ran all over the word, a review that is both offensive and just plain disturbing to the entire Autistic Community, something has to be done. So I am writing to you and I ask, no I beg, for the sake of the estimated 3 million individuals in the U.S. and tens of millions worldwide who have autism a retraction and apology from Mr. Germain.

What exactly is it that we, as a community, find offensive? This is the statement we are referring to which appeared in his recent review of the movie Extremely LOUD Incredibly CLOSE.

“Newcomer Thomas Horn, the 13-year-old star who was cast after the filmmakers saw him on a “Jeopardy!” kids episode, is a mixed bag, holding his own among the adult actors but, through no fault of his own, forced to behave with excessive shrillness much of the time.

That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive). You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating.“

Perhaps Germain makes “allowances” for the autism people in his life, but the autism community refuses to do the same about his ignorant and extremely insensitive comment. I am sure he would not even think about writing that he makes “allowances” about a movie character’s race or sexual orientation. The public outrage over that type of comment would be tremendous.

I understand the response as of now has been "is a veteran movie reviewer for the AP, Mr. Germain is expected to mince no words in expressing his opinion about the various elements of a motion picture and sometimes those words can seem overly harsh. But he in no way intended to be insensitive to the real-life challenges facing autistic children and their parents."  Steve Loeper

We understand that this is based on a fictional character but I know for a fact had the issue at stake been the characters race, sex, orientation, or any visible disability the paper would have retracted the article and provide the apology. Just because Mr. Germain is a seasoned writer does not mean he throws all compassion out and watch his wording. there are many other ways the statement could have been made without coming off as offensive. What I ask is what point was he trying to make by saying "you make allowances in life for people with autism" What did this statement have to do with the film other than being a bigoted point of view.

The autism community may not be as big as others, but none the less, we too our outraged and offended by this.

Every day I wake up and hope that TODAY, Today is the day that the world will see my boy for who he is and not just a label. Today is the day that he will be accepted, understood or at least tolerated. With reviews and comments like the ones that Mr. Germain made lingering out there, well that day is further away. Please, I ask that you retract this review and demand that Mr. Germaine make amends for his complete lack of compassion and respect. My son and all the others out there deserve it.

Sincerely yours,

*special thanks to Mama's turn now for putting into words what we wanted to say and allowing us to use her letter and add to it if we chose to* Visit her http://www.blog.mamasturnnow.com/

1 year

 

At this time last year I was sitting in the neuropsychologist office with my husband and my sons father getting the results from his testing. So today it has officially been a year that we have had a diagnosis. Did the diagnosis really change anything yes and no. For the most part everything is the same we just have a word for it. I have learned a lot in the past year.

Roger still is the same child as before, that will never change. We may have only had a diagnosis for a year but we have lived with autism for eleven years. What has changed is we know what sort of supports he needs in school. Before he was a frustrated C student, today he is on honor roll. Never let Autism make you forget your child's potential. Autism does not mean "Can't" 

The worst thing we could have done would have been to start treating him differently. He is expected to do chores, homework, and be respectful to others. This is not an excuse to have everyone else do everything for him. He can do it so he will. There is something every child can do even if it is a simple task like helping wipe a table, find what they CAN do rather than CAN'T. A little bit of independence goes a long way to making a person feel worthwhile and needed.

Autism is not going to magically go away on his 18th birthday. Roger will become a adult with autism and just like every child needs to know what is expected of him as an adult. No adult will get away with throwing a tantrum in a store more than likely they will be put in jail. SO what are you to do? You do your best to teach proper behavior and control. It will not happen overnight and it will never be perfect but take them out. The best therapy in the world is not in a office its in the world.

We have had friends come and go. Hey if you don't want to be around because the word autism scares you ok I didn't want you around anyways. There are family members that just don't get it. They think we can beat it out of him. Nope sorry not going to work, besides I don't want to go to jail.

I have meet a lot of people in the past year. Some to me take everything to seriously. When everything offends you your not fun to be around. Not every comment is made to hurt you or your loved ones. Take it with a grain of salt and when the big offenses come along people will listen. There are others who can laugh at themselves I mean really you have too.

I have also learned to make my decisions based on Rogers needs. ABA was pushed at first but when we really looked at it, we needed something else. Don't get me wrong ABA is great and works well for some but as with everything it does not work for all. While I have never gone the biomedical route I don't think it is appropriate for us but I am not going to browbeat someone who has chosen that path.

The most important thing we have learned is to listen to Roger he will show us what he needs.