Are there really people like this? Thursday, Apr 30 2009 


Bullying: Its not just for school kids anymore.

Bullying: Its not just for school kids anymore.

I am pretty appalled at an article I read this morning. You can read it for yourself at 10news.com, but I’ll paraphrase it here.  A family in San Diego had a son diagnosed with autism at 18 months.  At a later date, the child was being bullied by another neighborhood child.  The father, an airline pilot and retired Marine, tried to talk to the other child’s parents about it.  In response, that neighbor and two others filed restraining orders against the child and his parents.

How galling!  I mean, kids will be kids.  There are bullies, and those kids need to be taught better behavior.  However, when the parents will file a lawsuit rather than admit any sort of wrongdoing on their child’s part it seems pretty obvious where the child has learned how to treat people.  What kind of message are they sending to their kids, and how is that message teaching the kids to be better people?  If I ever say something to my son like “Well buddy, sometimes its better not to talk things out and file a lawsuit to get your way” I hope he has the good sense to ignore me!

The hard part is to find the good in people when you read about something like this.  I mean, the neighbors were making crazy accusations like the 4 year old “might come out with a firearm at anytime.”  Really?  I mean, my son is 5 and couldn’t load my pistol, which I keep locked up and unloaded.  Oddly enough, the father owns one gun as well, which is also locked up.  A former Marine is familiar with gun safety!  I wonder where he learned that?

I guess the silver lining is that it was thrown out of court, and the judge ordered the neighbors to reimburse the family for their legal bills.  There are good people, and some of them are in positions of trust and doing damn good jobs.  I encourage everyone to read the article and make their own decision, but I really feel like this is an instance where the our justice system did things right.

Please folks, think about your actions with these kids.  In my experience, there is no situation that cannot be resolved amicably when approached with calmness, honesty and an open mind.  If we are all tolerant of each other then everyone wins.  Thanks for reading.

Rock for Autism, or how I get motivated. Wednesday, Apr 8 2009 


So I started thinking that different people are moved by different things. First off, my main motivation is to help my son, but sometimes I need “a little help from my friends.” My friends are songs that inspire me. Naturally my son is now a fan of some of these songs, so I’ll share a few with you.

Radio, Radio – Elvis Costello and the Attractions

I’m not a huge Elvis Costello fan, but this song really pushes me. It has a great beat and a good message. I find it telling that Raymond’s favorite line is “And the radio is in the hands of such a lot of fools trying to anesthetize the way that you feel.” He has trouble singing it, but he really loves it anyway!

Handlebars – Flobots

Okay, this is a newer addition, and I think Raymond only likes it because he is really into riding his bike right now, but it still helps get me going. A simple college alt-rock/rap anthem about power and ego. Good stuff.

One Toke Over The Line – Brewer & Shipley

I put this on a mix cd thinking Raymond might enjoy the vocal interplay and upbeat tempo. He didn’t cotton to it at first, but now he loves it. It really helps me smile and push on when things are tough.

Gnarls Barkley – Going On

Raymond likes a few Gnarls Barkley songs, but this is the one that really gets my blood pumping. “Connect the cause and effect, one foot in front of the next, this is the start of a journey.” Gets me every time.

Must Of Got Lost – J. Geils Band

Not sure why he loves this one so much, but he sure gets into it. I like it because it has a great vocal line and a driving beat. Perfect for in car listening, but I have to fast forward through Peter Wolf’s intro in the live version due to adult language.

Say Hey – Michael Franti & Spearhead

I can’t think of another song that gets me dancing in my seat like this one. Wonderful song, and you get to sing “I love you” a lot in it.

I’ll include one last song, but I will be coming back to this topic in the future. My wife has one song in particular that she dedicates to Raymond every time she hears it, and I think its pretty apropos so the lyrics are below. They’re worth a read.

When I Paint My Masterpiece – Bob Dylan

Oh, the streets of Rome are filled with rubble,
Ancient footprints are everywhere.
You can almost think that you’re seein’ double
On a cold, dark night on the Spanish Stairs.
Got to hurry on back to my hotel room,
Where I’ve got me a date with Botticelli’s niece.
She promised that she’d be right there with me
When I paint my masterpiece.

Oh, the hours I’ve spent inside the Coliseum,
Dodging lions and wastin’ time.
Oh, those mighty kings of the jungle, I could hardly stand to see ’em,
Yes, it sure has been a long, hard climb.
Train wheels runnin’ through the back of my memory,
When I ran on the hilltop following a pack of wild geese.
Someday, everything is gonna be smooth like a rhapsody
When I paint my masterpiece.

Sailin’ ’round the world in a dirty gondola.
Oh, to be back in the land of Coca-Cola!

I left Rome and landed in Brussels,
On a plane ride so bumpy that I almost cried.
Clergymen in uniform and young girls pullin’ muscles,
Everyone was there to greet me when I stepped inside.
Newspapermen eating candy
Had to be held down by big police.
Someday, everything is gonna be diff’rent
When I paint my masterpiece.

Someday, everything is gonna be diff’rent…

A day in the life of autism Sunday, Apr 5 2009 


“What do you do all day?”

I get this question all the time, sometimes from my wife, but mostly from friends and family. I guess folks who don’t have a kid with special needs really don’t understand what we do. So, in hopes that I can direct people who ask me about my day here, I am going into detail about my day with Raymond.

We try to get up at 6am. If I get up at 6, I can do some exercise, eat my oatmeal and drink some tea prior to waking Raymond up at 7. My wife gets up around the same time and starts getting ready. Typically we will turn te tv on Noggin, and Raymond will wake up on his own. Perhaps not the best strategy for a kid who gets visually overstimulated, but it wakes him up while I shower, shave, etc. Also, it gives me time to measure his supplements and get him to take them. If we are doing vision therapy, we have to get that done too. Then I make his lunch while my wife helps Raymond get dressed. We get out the door around 8, and I drive Raymond to school.

School is a half hour away, so I get back home around 9. This is my chance to get stuff done. I blog, make my real estate calls, do research on properties or autism, pay some bills, schedule therapies, call the insurance company or any one of 30 other things that absolutely need my immediate attention. However, my workday goes on hiatus at noon, because I have to pick Raymond up from school at 12:30. So, after another half hour drive, I get to the school. There I talk with the teacher and her aide and ask about Raymond’s day, try to resove any issues, explain behavior they don’t understand and get a picture of how his education and social skills are progressing.

Then, depending on the day, we have either speech or OT. OT is at 2, so we grab a quick lunch out and head to OT. I will typically take Raymond’s supplement drink with me and he drinks it on the way. Speech is at 3, so we have time to go home and I make his supplement drink then. Then we head out to speech. OT days I drop Raymond off at his grandparents house at 3:30ish, and speech days its more like 4:30. Except Wednesdays, when Raymond has Therapeutic Riding, and we don’t get home until 5:30.

On the lucky days I get home between 3:30 and 4, I can actually get a little more work done. However, when I get home later than that, I have to start making dinner. I generally try to get Raymond’s vision therapy exercises done then too, and give him more supplements. Kelly gets home from work around 6:30 and we eat. Then we try to get some household stuff done, like laundry, take the trash out, etc. We also spend some time reading to Raymond, playing trains, games or whatever he wants to do. Some nights I work, either doing research for my real estate clients or doing data analysis as a subcontractor for my wife’s company. We watch a little TV generally starting around 9 and try to be in bed by 10.

That’s a perfect day. The rough days are when we wake up late and have to fit all that into a shorter time frame. Even better is when Raymond is uncooperative, so we are running late and have to figure out how to motivate him! Still, with our weekdays that full we must slow down a little on the weekends, right?

Wrong. Friday nights I either practice playing hand drums with a group called Bongo Buddhas or go to my Masonic Lodge meetings. Saturday mornings are devoted to either cranial sacral therapy with Raymond or counseling with our our therapist. Saturday afternoons are dedicated either to errands or showing homes to clients. We do get a break saturday night. Raymond’s grandparents are good enough to let him stay over once a week. This gives us a respite and lets us reconnect as a couple. Sundays are birthday parties, or day trips if we can find a fun place to go.

I’m not complaining. I love my life. I would be bored if I were less busy. However, I want people to understand that we do a lot for our son, but we also do a lot with him. I spend a great deal of time with Raymond, and it helps me stay connected to his needs. I think there is a perception among some folks that parents of kids with special needs are antisocial, or don’t want to be around, but the fact is that we are just super busy. Keep inviting us. Eventually we will show up, and I promise our company is worth the wait.

World Autism Awareness Day Thursday, Apr 2 2009 


Or World Autism Day, depending on who you ask. Today is a pretty good day to talk about all things related to autism, but the key is getting people to understand. I am committed to posting at least once a day on my blog during the month of April, which is National Autism Awareness Month, just to help educate and inform. So I think I’ll start today with the basics.

Autism Awareness Ribbon

Autism Awareness Ribbon

What is autism? Well, according to the Diagnostic and Statistical Manual Volum IV (DSM-IV), you have autism if:

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
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 two 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

(3) symbolic or imaginative play

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

I understand that doesn’t really give you a definition, but may help you understand that autism is not a cut and dried diagnosis, like a sinus infection or even diabetes. The Autism Society of America defines autism as “a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.

Awareness can help. Many people I have spoken with don’t really understand why awareness helps families with autism. Let me give you some examples from my life where awareness would have made life easier. First off, my son Raymond has High Functioning Autism. Much of the time he presents like a typical kid. However, when you begin to engage him you start to see his issues. One of his issues is auditory processing. He has acute hearing but has difficulty processing and making sense of sounds. Imagine how difficult simple things like shopping and riding in a car could be! Well, when I am in public and Raymond starts to melt down, I am typically very calm. I attempt to redirect him, offer him fidgets or whatever toys I have stuffed in my jacket pocket, but I keep on shopping or doing what I’m doing.
I can tell this frustrates some people. I get the looks. You know, the “why can’t you control your kid” looks that parents get from non-parents. I ignore them now, but when we were first discovering these things I actually had people come up to me and ask “what are you doing to that child.” Naturally I had some choice words for them, but on reflection I wish I could address them again and say the following:

“My son has autism, a severe developmental disorder. He has difficulty remaining calm in crowded or busy surroundings. Unfortunately, I still have to buy groceries and clothing or my family will walk around naked and starving. If this inconveniences you, I’m sorry, but understand it is only an inconvenience to you. It is much more than that to me. In the future, please try to be considerate of parents who are trying to handle their children. They might be going through something you cannot understand. Thank you.”

So awareness helps. Be kind, and understand that people who are not typical have the same rights to public places that you do. If you are not a tolerant person, give it a try. I promise you will get more than you give.

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