Chapter 8: AMNIOCENTESIS

 I was only planning to work half the day.I was taking the afternoon off to accompany Kathy to her appointment with her OBGYN. Her doctor recommended "we" undergo a procedure called Amniocentesis. Amniocentesis, for those who don't know, is when the doctor takes a large needle and inserts it through the abdomen and into the uterus to extract amniotic fluid. The doctor can analyze the fluid and tell you the sex of the baby and detect 99% of all birth defects. That's right, 99%; Downes to Spina Bifida and everything in between, before and after. When a parent hears that,he/she can't help but be reassured; why worry about anything?
  I was working with a client from Kaiser Permanente, we were setting up for a large employee meeting that was happening the next day. As I got ready to leave for the afternoon, I went to the client to let her know I was leaving and to introduced her to the event manager that would stand in during my absence. She asked me how Kathy was doing with the pregnancy and that led to an interesting conversation. I told her that I wanted to know the sex of the child and Kathy didn't so we agreed that I would find out but keep it a secret from Kathy. (..and Yes, I did find out and keep it a secret from Kathy for 6 months!) I also told her that the test would reveal any possible birth defects the child may have.
 She asked me, "if your wife doesn't want to know the sex of the child, are you making her go through this procedure just so you can find out?"
  I said, "of course not. I wouldn't put my wife through this for such a selfish reason. The doctor recommended we have this procedure because Kathy is 35 years old and this is her first child." 
 My client said, "well, what do you expect to learn from this procedure. What would you do if you find out you child has a birth defect?"
I responded, "I don't know. But I'd like to be informed so I can prepare."
 "Prepare for what? You wouldn't abort the child, would you?"

I was really kind of floored by such a personal question. Perhaps I asked for it, after all I provided the information that allowed her to go there in the first place. Still, I couldn't help but be offended.

 I said,

I

 "if I know that my child has any type of disability or special need, I can be prepare myself by learning as much as possible in advance. Preparing/adapting the house, if necessary."

 My client just looked at me and said, "that's not why most people have those test."


 I walked away thinking what a self-righteous piece of work she was. This obviously had nothing to do with medical issues and everything to do with her religious views. It really ticked me off!
I see my job as a father as simple, though challenging in today's society; raise a child that is empathetic, well-educated, strong and socially conscious. I can't raise anyone else's child and I don't care to change anyone else's life that doesn't pose a threat to my family. Women who want abortions, don't pose a threat to my family. Men who fall on love with other men, don't pose a threat to my family. People who own the meth house on the corner, pose a MAJOR threat to my family. See how that works? Anyhow, I am waaay off the subject matter here...

Kathy went through the procedure and six months later, Taylor was born, beautiful and perfect. Of course we were told the test of the amniotic fluid revealed no birth defects so we had no concerns when Taylor was born. As predicted, we were rewarded for our faith with this perfect little angel.
  When it came time for Kathy to undergo the amniocentesis procedure again, "we" were pretty comfortable with everything. After all, our one experience had gone really well and we couldn't argue with the results. 
  Once again, the procedure went well and this time we both wanted to know the sex of our new baby. We struggled with names for a long time before we finally settle on Danielle. We had everything pretty well planned out. We knew our child would be fine. Baring some horrible unforeseen accident, our child would be perfect. After all, amniocentesis detects 99% of all birth defects and birth defects are what parents worry about. Certainly, developmental disabilities never even crossed our minds.   
  When I look back on my conversation with my client from Kaiser Permanente back in '97, I have to ask myself,  "If amniocentesis could have predicted Danielle's autism, what would we have done?" Would we have decided to go through with the pregnancy? Kathy and I have never discussed abortions. It was never an issue but could it have been? Would it have been? It is easy to look at Dani today and say, "No way would I have missed out on this kid." But, given the little information we knew about autism at that time (absolutely nothing), the few resources available then and to this day, the stigma, concerns for the future and the stress on relationships, it is not hard to imagine some deep discussion, soul searching and much prayer. Thank goodness we did not have to make that decision.

The Nature of Conflict

CONFLICT IS CHARACTERIZED BY THREE ELEMENTS:
-Interdependence

-Interaction

-Incompatible goals


Conflict is a natural component of the human relationships and can only be expressed and managed through communication.
When we become dependent on one another to meet our goals or needs, conflict can arise.

Constructive Conflict
-Allows constructive change and growth to occur
-Provides an opportunity for resolving problems associated with diverse opinions, goals and needs.
-Enhances productivity
-Provides a method for creating consensus
Destructive Conflict
-Develops when common goals and needs are incompatible
-Occurs when individuals stick to respective positions and the likelihood of a resolution is diminished
-Results in increased frustration, dissatisfaction, anger and disassociation

Conflict is not synonymous with anger.
Advocacy is not synonymous with adversary

FROM TAP SILICON VALLEY ADVOCACY INSTITUTE, 2009

Chapter 3: Holding Out

From my Facebook account May 20, 2010:
Kathy and I had our lives planned pretty well. I was a mid level manager with the City and I was due to retire at age 57. With our retirement plan and deferred compensation, we would receive approximately 80% of my annual salary every year for the rest of our lives. We wouldn’t be rich but we would have choices; in many ways, having choices is the definition of comfort.

The two year period following Danielle’s diagnosis caused me to question my direction, my focus and my idea of fatherhood. The stress of dealing with Danielle’s disability was taking a toll on Kathy. I was working 50 plus hours each week. My job called for me to work rotating shifts; I might work the Symphony performances Friday thru Sunday evenings, take Monday off and return to work Tuesday through Friday morning on a tradeshow or convention. The schedule was different every week. It was solely based upon what was happening in any of the seven (7) facilities I was responsible for managing. The ever-changing schedule was what I loved about my vocation. I’ve never been a 9 to 5 person. When I was a young man, I couldn’t imagine sitting at a desk for eight hours a day. The ever-changing environment of event management was the ideal way for me to make a living. From theater to arena to convention center to ballroom to auditorium, every week was different. However, as with many relationships, the thing that attracts you most is what tends to drive you away, in the long run.

The constant change in my work schedule was creating havoc at home. It is difficult to plan family activities when you don’t have regularly scheduled days off that your spouse could count on. This had never been a problem before. I’d been working like this for nearly 15 years and we enjoyed the benefits that went along with my position. My girls attended Ballet performances and they went behind the scenes on some really fun and unique events; America’s Smithsonian’s U.S. Tour, “Dora The Explorer Live”, the Symphony, the Harlem Globe Trotters and the Charity Ball. I’ve always believed that it’s important to introduce your child to a wide variety of cultural activities and we were fortunate to have the opportunity to expose our girls to all of these wonderful the things and more through my job. Kathy also enjoyed the access and opportunities that my job provided. However, things had changed dramatically for us over the past few years. What we needed was stability and routine; two things you don’t get as the Senior Event Services Manager for the City. The job that I loved had become an obstacle, a hindrance to my ability to provide the physical and emotional support that my family needed.

What about the plans we had? We were only thirteen years away from a fairly comfortable retirement. We have seventeen years invested in this “plan” and things are going as scheduled. If we could just hold out, things will work themselves out. Or will they? Remember, “early intervention is the key to success”. These words echoed in my mind constantly. I began to question our plan, what was the reality of our situation? When we do retire, what would we be retiring to? Would this be a smooth transition into a life of relaxation or would we retire to provide full time care for our disabled daughter?...”early intervention is the key to success”. Where am I investing my time?

Soon, my questions went beyond just the legitimacy our plan. I began to question everything; my faith, my strength, my commitment to my wife, my ability to lead. I was constantly haunted by something that I had to confront head-on. I had to make a decision about what was important in life. If being a father meant making sure that there was a roof over our heads, food in the house and clothes on our backs, then I was fulfilling my role and more. However, the questions continued to resonate in my head; was I doing all that I should do? Was I doing all that I could do? After all, “early intervention is the key to success”.

One of the most disturbing aspects of this disability is all of the “unknowns”. No one can give you a long-range prognosis because every child is so different. As parents, you really don’t know what you’re planning for; are you saving for college tuition or for long term assisted living services? The experts can’t tell you, all they will say is “early intervention is the key to success”.

We are thrilled when we hear about parents like Jenny McCarthy and the success their children have experienced with changes to their diets. So, we think perhaps this is the answer we’ve been waiting for; only to discover that what worked so affectively for her child has no apparent benefit for you child whatsoever.

Every parent of a child with autism has heard of Dr. Temple Grandin and her miraculous story. Many parents see Dr. Grandin as an example of what their child could accomplish with the proper education, therapy and support services; realistic or not. As parents, we see the possibilities; we witness those glimpses of what our children are capable of through hours of interactions. It’s so difficult when you look into you child’s eyes and you know that given the proper help, your child could someday live an independent life but the proper help is beyond your reach.

There is a wonderful organization called Natural Learning Concepts, http://www.nlconcepts.com/, that features an online article called “On The Spectrum.” These articles are written by people who have autism. Their stories are both informative and inspirational. When you read a story or an interview of an adult who has learned to function within the “norms” or boundaries of his/her community, it gives you hope and inspires you to continue to hold out for that miracle.

In a way, it is a cruel and slow brand of torture for many families. Hope can sometimes be exhausting and inhumane. Of course, you can’t give up; what if the one thing you did not try was the answer you were looking for all along? So, you continue to hold out for the miracle. You end up chasing any and every lead that arises, just hoping that something will prove promising for their child.

I needed to ask myself some very serious questions. Was I doing all that I could do to help my family? How would I feel if I retired and found out that I could have helped Danielle if I had invested the time when she was in her formative years? Should I continue to hold out and hope for the best or should I invest in my family now, in order to insure our long-term survival? How do I do that without jeopardizing our plans for the future? After all, my job is what sustains us. The rotating and ever-changing schedule that we struggle with is what pays the bills and allows Kathy to be a stay home mom.

What we had to do was take a long look at the reality of our situation. Was our retirement plan the priority or was the health and well being of our girls the priority? The answer to that question came very easy to us. Our girls are the center of our world. The plans we made, the goals we set were all artificial and presumptive. The only true reality was that our girls deserve all of the tools and resources we can muster.

The reality of what we needed to do was more than a bit sobering. I had to find a job that would allow me to spend the quality time necessary to help my family. This was not going to be an easy task. The job market wasn’t really strong and I was 45 years old. Attempting to re-invent yourself at 45 is a daunting task, especially when you hadn’t planned to make the change in the first place. I had been in the special event management field for nearly 25 years. There aren’t a lot of jobs that call for the unique set of skills required for logistical/production management. I didn’t want to go back to concert logistics or stage management, I was much old for that life style and the time commitment and scheduling would continue to be a problem. I don’t have advance computer or technical skills and in the Silicon Valley, that is nearly sacrilegious. However, the task at hand was clear; I had to make a change or risk suffering the long-range consequences of doing nothing at all. So I started looking for work in the Fall of 2005.

Now that we were willing to let go of “the dream”, what were we going to do to affect change? I’m committed to the change, now what? How do I help Danielle and help other families who are struggling with many of the same issues? We don’t have money, we don’t have political connections, and we don’t know where to start.

In November of 2006, I interviewed for and was offered the position of Vice President of Administration, Planning and Program Development for a local nonprofit organization. I recognized this as the ideal opportunity for me to learn the how the nonprofit world works from within a well-established and successful nonprofit organization. If offered this position, my path would be set. If successful, perhaps I could persuade the Executive Director to assist me in developing and implementing programs to assist children with autism, their families and caregivers. I couldn’t have asked for a better opportunity. I decided to jump in, head first.

Not All Abuse Is Physical

The past several years have been full of anxiety and stress. Having and child with a severe disability takes a real toll on parents; both individually and as a couple. Yesterday, I let my frustration get the best of me and I did something that I find unacceptable and extremely difficult to overcome. I lost my temper with Taylor and I allowed myself to cross the line of discipline. There is no excuse for it.
Taylor is a typical 13 year old. By that I mean she knows more that both parents combined. This isn't unusal for a child this age, they all know more than their parents do. I  know this. For me to allow my anger to manifest itself in such a way was very hurtful and I've been awake all night thinking about it.
Without going into all the details, I yelled at her and told her that I was sick and tired of being questioned and second guessed about my decisions. I told her to go to her room and that I did not want to see her until the next morning. To some people, that may not sound all that bad but it wasn't so much what I said, it was more how I said it. I was angry, my voice was hostile, it was as if I was talking to another adult. I immediately knew I had crossed the line but it was too late.

Later that evening, I went to her room and found her sitting on the edge of her bed crying. I felt like a complete jerk, a bully. Though she needed to be corrected, she did not deserve to be talked to in that manner. I know this. I sat with her and apologized for my behavior. I told her how much she meant to me and what a wonderful little girl she is. I don't know that that will be enough.

Men raising girls should be careful in how they speak to them, especially when it comes to expressing anger. I know this. For this reason, I have always been very careful when expressing anger with my wife. I don't ever want my girls to hear me berating Kathy or speaking down to her. I don't want them to ever think that it is acceptable for a man to be verbally abusive to is partner. I don't want Taylor to ever enter into a relationship where she willing to accept that type of behavior from a man.

There is no lower feeling than when you look into your child's face and you know you've said something hurtful. My God, this is tough.

I grew up with a father who was known for his temper. When I was thirteen years old, I decided to embark upon a life of crime. Actually I'm being over dramatic; I tried to steal a bicycle lock from a shopping mall. Having never stolen anything before, me and two of my friends were caught and our parents were called to pick us up. If I recall correctly, my two friends were grounded for a couple of weeks. I should have been so lucky. Instead, my father stripped me naked from the waist down and he took a pool cue and he began to beat me from the back of my knees to my lower back. I can't remember how many times he hit me; I couldn't possibly count the blows. He beat me until the pool cue broke across the back of my thighs. I thought to myself, "thank you God for breaking that pool cue". But Dad wasn't finished, he picked up the fat end of the broken pool cue and began beating me again. He beat me until he was literally to tired to swing the pool cue anymore. He finally staggered out of the room in exhaustion.

 I could hardly stand for the first 24 hours following my "punishment". My back and hamstrings were purple and black. I spent the next three days lying in bed, on my stomach. I couldn't go to school and could barely go to the restroom. This is one of a few memorable "whippings" I received from my father. How can a person do that to a child? They say that people who are abused as children often grow up to be abusers themselves...The operative word is "often". It doesn't always have to be that way. I refuse to repeat the sins of my father.

I got over it but I never forgot it. It has influenced the way I deal with my children to this day. That is why I was so upset at my behavior with Taylor. I know better.

The "3 Es"

There are several leading reports available that show how the people that will be supporting the disabled and elderly (the direct care workers) will be grossly under-staffed in the next 10-20 years (aging baby boomers). Unless we start building a localized effort to encourage and support people in this field, we will have a significant problem in the coming years. Utilizing the model from the Gates Foundation, we can build a 3-tiered approach to developing future programs:



1) Encouraging – Encouragement of high school programs to volunteer in disability programs or develop disability sensitivity training on the campus. This is a collaborative effort with the current disability programs to open up training and volunteer opportunities – something Agnews used to provide.

2) Enabling – Ensure that individuals in the field are adequately supported. Build internship program collaborations to foster connections and growth in the field. Identify certificate or credential programs to support direct care workers in the field of upward mobility.

3) Entrenching – Building retention programs to support cross collaboration with other agencies to encourage growth and a broader level of support infrastructure for current agencies and employees.


(The 3 E’s) While those affected with disabilities and their parents will secondarily benefit from the training and resources developed in such a program, we need to create opportunities for organizations  focus on building agency/vendor/school-based support infrastructure. There are numerous people and organizations out there seeking to be the clearinghouse of information or parent resources…but nobody is building the core infrastructure to build a stronger tomorrow.


This is a unique vision for a new organization and would define the nature of organizational collaboration. This is what's truly needed.

My Journal

Prior to Danielle's diagnosis, I had never really written anything of substance. I never kept a diary or journal, I never really wrote letters. I had written a couple of small grants and the obligatory grant reports, some event reports required by the City of San Jose and of course, business letters to clients. Otherwise, I never consider my self a writer and I certainly, never thought that I would be blogging or writing in a public forum. Yet, here I am...I've been writing since around July 2003. I have averaged about three or four journal entries per week since that time. I probably have enough to write three or four books by now. Probably 80% of the content of this blog has come from my journal entries over the years.

  I began writing down my thoughts as a means of "self regulating" the anger, stress and tension that accompanied all of the new "unknowns" in my life. I tried counseling and it really didn't help me much. I realized that writing these things down and coming back to review them days or even months after the fact was tremendously healing and insightful. Often, I am surprised when reading something that I wrote several months ago; sometimes pleasantly, other times not so.
  When I started this blog, there were lots of things I wanted to do. However, there were two things that I said I would never do, my two blog rules

1. I would never use a blog to attack an individual or organization no matter what our differences. The key to any quality blog is integrity and if left unchecked, blogs can do more harm than good.


2. I did not want to put out a bunch of negative, unbridled emotional crap. There is plenty of that to go around. I wanted this blog to provide good information, resources and insight for people who are interested in the human condition. Not just about disabilities but about family, community, society; past and present.

 I know that I am not that unique when it comes to fathers. At least not amongst men who are connected to family and have strong family values. Perhaps my response to our situation is not/was not typical but I know the concerns, fears and questions must be the same as any other dad.
  For this reason, I am about to come very close to violating rule #2. I am going to publish part of a journal entry that I didn't think I'd ever share with anyone. Not due to any embarrassment or anything like that, but just because it is such a bummer! I was clearly at one of the lowest points in my life and I wasn't sure where to turn. I questioned everything; my love for my wife, my faith in god, my ability to lead my family, my strength of spirit, my will to succeed, my desire to parent. It was a terrible time but I got through it. I went in one side and emerged from the other, more determined and committed to the cause then ever.

Here is a portion of my journal entry from the summer of 2005:
...Danielle insisted on taking a bath so I ran her water and put her in the tub with some of her toys. Kathy was out with her girl friends so I had “Daddy Duty” for the evening. I left the bathroom, for just a few minutes, to check on dinner. When I returned to see how Danielle was doing, I found that she had defecated in the bathtub. There she was, lying on her back, floating up to her ears in her own waste.
  Of all the challenges that Danielle faces, this is clearly the most disturbing. “Disturbing?” The issues surrounding cleanliness are down right emotional for me. It brings me tears each time I witness these unconscious acts. I don’t know why it strikes such a cord with me but it is very difficult to express the feelings I experience when these things occur.
  I took her out of the bathtub and cleaned her off. I cleaned and sanitized the restroom and refilled the tub with clean water. I bathed Danielle and washed her hair twice. I drained the tub, once again, and bathed her thoroughly. Afterwards, I dressed Danielle for bed and put her in her room.
  I went back downstairs to check on Taylor and dinner. When I returned to check on Danielle, I found that she had defecated in her “Pull-Up”. She didn’t like the feeling of having soiled clothes on so she took them off and put them in the middle of the floor. Danielle attempted to clean herself with her hand and with the clothes in her room. By the time I returned to check on her, there was feces on the walls, in her bedding, on clothes that were spread throughout the room, in the carpet, on the door knob, all over her face and hands. I completely lost it, and I began to cry. I cried as I re-re-bathed her, I cried as I stripped her bedding, I cried as I scrubbed the carpets and washed the walls. This wasn’t the first time that this has happened. I really did not know what we were going to do or where we could turn for help.
  The next day, I talked to the father of a 12-year-old boy who hasn’t learned to use the restroom. “John” is a very handsome and likable young man but he just hasn’t mastered his toilet skills, yet. As I expressed my distress over Danielle’s transgressions, John’s father began to tell me his story. John is 12 years old and growing through puberty. The fact that he is still in diapers is a major obstacle to John’s advancement. There are very few Assisted Living Services or Independent Living Services that deal with adults who have this problem. John’s family is hoping that someday he will learn to use the restroom so he will have options for placement. The words of John’s father hung heavy in the room. Suddenly, my concerns about Danielle came in to perspective. Danielle was four years old and she clearly understood the concept of using the restroom. That was why I was so upset when she had these “accidents”; she knows better. She goes to the toilet 80% of the time. The 20% of the time when she doesn’t make it, the outcome is extremely unpleasant but John’s ongoing struggle brings this all into perspective.
  This is the most trying and difficult times of our lives and I know this is just the beginning. I just don't know where to turn for information or guidance. Of course, we keep hearing, “early intervention is the key to success.” But where were these “critical” early intervention programs.
Autism can be a really expensive disability to deal with. I’m sure that all disabilities can have a huge financial impact on the average middle class family. However, most disabilities have provisions in standard medical insurance policies. This is not necessarily true with autism. Many insurance carriers won’t provide coverage for occupational therapy, speech therapy, etc. Proper professional care and therapy for a child with autism can easily range from $300-$600.00 per week. Many families rely heavily upon the services provided through the local public school districts. Dental insurance can also be a challenge for families with children who have ASD. Recently, Danielle needed to have some dental work done but because of her autism, she was unable to sit for the procedure. Her dentist told us that we would need to have an anesthesiologist to assist her with Danielle’s dental work. We had no choice; we decided to pay the $1,050.00 cost and try to get reimbursed for the expense. Our dental insurer said that the anesthesiologist was a medical expense, not a dental expense therefore they would not reimburse us for the services render by the anesthesiologist. Our medical insurer wouldn’t cover the procedure because in happened in a dental office not at a clinic or hospital. Unfortunately, this is not an unusual occurrence for families like ours. For families who have limited resources, these types of expenses can be devastating. There needs to be some dialog with legislators and the medical community regarding the basic therapeutic needs of children with ASD....

Enough drama! That's about all that I'll share from this journal entry...

Me, A Socialist?

A friend of mine called me a leftist and socialist yesterday. I'm not a leftist, though I am clearly left of center. I'm not a socialist, I'm a patriot. I believe that free education and medical care for our citizens will make our country stronger in the long run...But that's another story.

The argument began over our conversation about the governor's race. I ask him who he was voting for and he told me he was supporting Meg Whitman because he liked her stance on immigration. (By "stance" I assume he meant commercial ads.) He felt it important to expand on this by saying, "she'll keep those wetbacks from crossing the border." He felt it was okay for him to say that because he is Mexican American. I felt just the opposite, I felt it was absolutely appalling to hear that coming from him.

Do I have issues with conservative people or conservative values? No.
Do I think there is anything wrong with Mexican Americans advocating for immigration reform and tougher laws? No.

I have no problem with conservative values that are based upon political or economical ideology. However, when conservative values are based upon class, race or social issues, I can't help but be concerned. To hear a Mexican American refer to someone who looks just like him and whose parents look like his parents as a "wetback" was kind of disturbing.

Of course the inevitable comparison between this issue and black people's use of the "N" word had to come into play during this conversation. All I could do was attempt to give an appropriate analogy to address his point. If you are a recovering alcoholic and another alcoholic approaches you and says, "hey you ole drunk", you might take it in stride, even laugh about it. But if another person approaches you, someone with no concept of the pain and hardship that this addiction has inflicted; a person with no history of substance abuse calls you a drunk, your feelings and emotions will tell you that this person doesn't have the background or knowledge to truly feel empathy towards you and people like you.

I don't know that that's a good analogy but it was the best I could do at that time.

What bothers me about this is the apparent need that some people have to "assimilate" into American culture. Dr. King spoke about integration not assimilation. Integration is key to the survival of our society. Assimilation is not only unnecessary, it is harmful in so many ways. Can you imagine a world where all Asians, Blacks, Hispanics and Whites all spoke the same, acted the same and shared the same beliefs and values? I couldn't imagine a more boring place to be...

Economic and political reasons for conservative views are legitimate but where does the "wetback" thing come from? I know what his issues are, he is Mexican American, he has no college degree and he is a non-union carpenter/painter. So he sees Mexican day laborers that are able to work cheaper than he can as competition. I get that; it's an economic reason. But, that's not how it was expressed. I just don't get the whole wetback thing. After all, to most conservatives, he looks just like the people he's advocating against. The fact is, they may have more on the ball then he does because they speak two languages.

Conservative values that are based upon class and race should be a concern for everyone. The problem I have with the so-called "Tea Party"movement is the fact that it is hard to believe that their agenda is based on tax reform and smaller government. After all, this "movement" really picked up momentum about 6 weeks after President Obama was elected to office. The previous administration was spending $10 Billion per week in Iraq and they didn't even put it in the budget. How long was that going on? Where was the Tea Party movement then? Is it reasonable to think that the spending wasn't out of hand until March 2009?

The conservative movement is being hijacked a bunch of racist, homophobes who feel they are somehow "getting the shaft". Unfortunately, some minorities believe that in order to "fit-in" they must pander to the worst that this so-called "movement" has to offer. Well, you don't.

It is okay to hold conservative beliefs without selling your soul. You can believe in immigration reform without reducing immigrants to a status less than human.

Another Facebook Rant

This was taken from one of my Facebook Rants in June 2010. The dangerous thing about blogs is that a person can engage in character assassination and slander with virtually no rebuttal. That is something that I will not allow myself to do in this public forum.
  Sometimes I write things and when I return to read them later, I am surprised by what I read. This was one of those occasions when I was surprised at the level of frustration demonstrated in this "rant". Surprised yes, but do I regret it, no. I believe my frustration was justified. 
  Elected officials are supposed to represent their communities. I sometimes wonder if that truly is the case. Could it be that middle class Californian's don't care about education? Is it possible that most people believe that our legislature functions fine and that I'm one of the small minority of the population that thinks our priorities are all screwed up?
I feel like the naked guy on the UC Berkley Campus; no one understands me...and they won't take me seriously because I'm not one of them...and I'm naked...

June 2010-
The problems families in the Silicon Valley face are exacerbated by the total lack of support for education that has continually been demonstrated by our state representatives and legislators. Our representatives have continually failed to recognize the importance of our public education system and it is reflected in our annual state budget. When I look at what states spend on their public education budget and compare them to California, I’m appalled and embarrassed. California has the ninth largest economy in the world…The World!! In spite of our economic power, we are forty-eighth amongst our states in per-capita spending on public education. The strange thing is that this is common knowledge amongst educators, parents and legislators but nothing ever changes. It amazes me that prison guards make six figure salaries and their union seems to be able to abscond with any and every possible scrap of “surplus” money in the state budget. Meanwhile, teachers rarely can afford to purchase homes in the areas where they teach. California refuses to invest in their children. Instead, we let them flounder until they are old enough for us to incarcerate them. It’s the “Fisherman’s Mentality” that many conservatives cling to; the little ones aren’t worth the effort so you throw them back until they’re big enough to keep. Then we pay $40,000.00 per year to lock them up in prison. For many young people, it’s their official apprenticeship for a more notorious lifestyle.
  What if we flipped the process 180 degrees? What if we invested $40,000.00 per year, per student on public education and allowed $6,900.00 per year, per inmate? Is it possible that Oakland might not be amongst the most dangerous Cities in America? Would South Central L.A. have the reputation it has if we flipped the script? If we invested $40,000.00 per year in our students, then you’d know the people who end up in prison really have no excuse. The new $6,900.00 per inmate budget approved by the state legislature would be justified in my book. When you have the economic power of this State and you consciously choose not to invest in the future of your children then you are going to have dangerous areas like Compton, Oakland, Richmond, Petrero Hill, Hunters Point and East Palo Alto.
  The fact is we have continued to elect representatives that do not reflect the core values of our families. Perhaps it is apathy or perhaps we are not as well informed as we should be, but some how we have allowed our representatives to run unchecked. The state education budget is the perfect example of a scandalous situation that is common knowledge. We did not recently discover our dubious distinction of being at the bottom of the list of school funding amongst the states. It’s been well documented for some time. So, why hasn’t the situation changed? There are some legislators who have been and continue to champion the cause of public education. Given what’s at stake, why aren’t there more? Why hasn’t there been any change in our priorities? Instead, the prison guards union runs the state and we seem to be fine with that.
  We are facing a major crisis in our state budget. Our governor has proposed a state budget that would include blind cuts across the board. These cuts could amount to a $4 Billion dollar reduction in funding to our public schools. To our governor, a man who has never held public office and is worth several hundred million dollars, a $4 Billion cut to public education seems perfectly acceptable. Why not, his kids don’t go to public school and neither will their kids or their kid’s kids. There is a complete disconnect between this man and the working class.
  Rather than cut $4 Billion from public education, why not tax the oil companies for the oil they pump from the ground? Given the huge profits they enjoyed over the past few years, they should be able to survive a state tax on the resources they are processing and selling to the public. Most states already tax oil companies for the oil they take from the ground, but not California. Why not impose a sales tax on luxury items like yachts and airplanes? I pay sales tax on my automobile, why not a sales tax on big-ticket luxury items? Why don’t we increase the vehicle registration fees; anything but cut the education budget.
  Our governor has no concept of what everyday people do to survive. It always amazes me when people like this want to go into public service. They may have the political connections to get what they want but they have no connection to those they are supposed to serve. Clearly, service is not the reason that people like this go into politics. They will often convince themselves that they are there to “give back”, but rarely is that the reality we witness. I can’t blame Mr. Schwarzenegger for being disconnected; after all, the people of California elected him as their governor. Californians like to think of themselves as being liberal and very progressive. People in other states definitely believe the stereotype(s) about Californians and their liberal views. However, when you look closely at our history you realize that we are not nearly as liberal or as progressive as we’d like to think. Sure, there are pockets where liberals have a strong base however I find California to be very conservative as a whole. A review of our recent list of past governors will provide you with the clearer picture of what this state is all about. There is San Francisco, Los Angeles, Berkeley, Santa Cruz and a handful of small bastions of liberalism; otherwise California can be as red as many other states.
  As a society, we have lost our focus. There is no connection to our neighborhoods or our communities. This is clearly reflected in the people we have elected to represent us on a state level. How could it be more important to save taxes for corporations than to invest in our children’s future and in our public education system? This is the indication of a society that is on the brink of moral bankruptcy. I wrote a letter to the governor expressing my concerns that a public education would become a luxury to many families if the education cuts he proposed were passed. The reply I received from the Governor convinced me that he will have a long and successful career in politics.

Chapter 2: Inadequacies and Fatherhood

What does it mean when you hear someone say, he was “just a man”? You hear it all the time. I’ve heard my friends say it, I’ve heard it on TV shows, and I’ve even heard my mother say it. Ninety-nine percent of the time, it is used by a child in reference to his or her father. I say this about my father all the time; he was “just a man”. What does this mean? How and at what stage of a man’s life does he earn this dubious distinction? Is it when you children recognize you for the flawed human being you are? Is it when you have publicly compromised and/or embarrassed you and your family? Or, is it simply when you become a father?
There are probably many answers to this question. One thing I’m sure of, it doesn’t happen before you become a father. Don’t misunderstand me; I’m not going to reflect poetically upon my days as a bachelor. I don’t suffer from any illusions. I recognize my limitations as a man. However, prior to the birth of our first child, only I knew any character flaws or weaknesses that I had. Sure, I was married for several years before Taylor was born. While my wife may bare witness to weaknesses in my character or deficiencies in my role as a partner, the reality is she is my spouse. It is easy for a person to explain away a spouses claims as “a relationship gone bad” or as “more my spouses problem” than mine. Not so with a child.

Children have a way of exposing a man for what he is. If you are a cold and distant person, if you are unsupportive father, a poor provider, if you do not take time to acknowledge and strengthen your relationships, these things will manifest themselves through your children and their relationships with individuals and their community. Every child is different so you don’t know where, why, how or when these issues will present themselves but rest assured, they will.

As a father, I am the model from which men are made in my daughter’s eyes. My relationship with their mother will help determine their idea of how a man should love, respect and support his wife. When the time comes, my girls could look for a man like “Dad” or they could look to someone who is my polar opposite. Much of this is based upon my relationship as a husband and a father. It’s an awesome responsibility and one that many men fail to recognize.

If I had a son, the one thing that I would share with him is the importance and responsibility of being a good father. I’ve been witness to the struggles of young, unwed women in our community. Even the “well intentioned” young fathers who believe that occasional financial support is sufficient to produce young men and women of character are painfully ignorant of the future they are helping to create.

As a father, my greatest hope is that my children will be better than me. Better people, better educated, better citizens, better connected to the environment, better in every way, shape and form. Providing the experiences and resources necessary to make this dream a reality has become an overwhelming obsession. But, I digress…

When does a man achieve the dubious distinction of being “just a man?” What does it mean when your children refer to you in that way? Usually, this term is used to excuse the challenges many of us face when trying to connect with our fathers. It’s a sort of “Parental Pardon” for fathers whose behavior was, at minimum, less than acceptable. A qualifying statement like, “my father was not a very affectionate person and we didn’t have much of a relationship but I’m not bitter, after all he was just a man” usually precedes the term. Or, “my father was abusive and my mom was often afraid for us. But, over the years I’ve come to forgive him. I realize he was just a man.” How often do you hear someone say, “ I forgive her because, after all, she was just a woman?” It happens but not nearly as frequently as with dads. That says a lot about our society.

I recognized my potential for being recognized as a mere mortal when my daughter, Taylor was born. The first time I held her, I realized that I could be exposed, naked to the world, for who I truly am. A good loving and supportive father or a distant dictatorial tyrant, my values and who I am will greatly impact the lives of my girls and their loved ones.

I don’t suffer from any illusions. I recognize my status as a mere mortal and my limitations as man. I know my girls understand that I am only human. But when all is said and done, I hope that my daughters have more to say about me than that.
I’m not sure what my father’s relationship was with my sister. I don’t ever recall him disciplining her; certainly not in the manner he disciplined me. I’m really thankful for that. However, I know that my sister attempted to establish a relationship with him after she married and had her son. My father never reciprocated and eventually my sister gave up her attempts to salvage the relationship. She was emotionally crushed by his lack of concern and his obvious unwillingness to acknowledge their connection. Sometimes being cold, emotionally distant and uncaring can be as devastating to your children as being physically abusive.

Today, my sister has moved on with her life and bares no obvious animosity. However, if I were to ask her how she came to grips with her relationship with my dad, I’m sure she’d say she forgave him because “he was just a man.”

Advocacy At It's Best

In March of this year, the San Jose City Council announced that due to the city's $100 million dollar deficit, the Office of Therapeutic Services would be eliminated. Almost immediately, community members, local nonprofits and parents went to work advocating on behalf of the Therapeutic Services programs. Two weeks ago, it was announced that major cuts were to be made in both the fire and police departments; cuts that were unprecedented in my 35 years as a resident of San Jose. Within moments of hearing about the cuts to fire and police staff, I was told that the Office of Therapeutic Services had been spared.
When I started making calls to people in the community, several people said that fighting these cuts was going to be a real battle and it was not likely to go in our favor. Others were less optimistic. But there is always a core group of passionate individuals that won't give up no matter what. The key is to find those people. This is advocacy at it's best.
Here is a copy of a letter I wrote to the San Jose City Council in April.

Dear City Council Members,

These challenging economic times call for some very difficult decisions on the part of our City leaders. Certainly, there are many worthwhile programs and valuable human resources at risk. While there is no way to avoid the loss of some programs and services, I implore you to reconsider the City Manager’s proposal to eliminate the Office of Therapeutic Services. People with special needs, children and families are often isolated with very few resources or services available to them. For this reason, they are often the first to see their services eliminated and the last to see new programs developed and implemented. The City of San Jose’s Office of Therapeutic Services has been a progressive leader in the inclusion of people who are struggling for acceptance and basic opportunities.
As the father of a child with special needs and a long time disabilities advocate, I have been proud to call the City of San Jose my home. I have witnessed the growth of this department and the impact it’s had on our community. I’ve spoken with representatives other local municipalities about the merits of therapeutic services for their community and offered the City of San Jose as a model for what truly works.
The loss of these programs means the loss of resources for our most vulnerable citizens. The impact of these losses will be felt in homes, in schools and in neighborhoods throughout our city. Rather than cut valuable services, I would suggest that the City consider partnerships with other local service providers, collaborative programming with other municipalities to leverage services or any progressive strategy aimed at providing services to our most under served population.
I appreciate the hard work and dedication of our City Council. I certainly understand the difficult task at hand and I thank you for this opportunity to share my sincere concerns.
Sincerely,

Brian Miller
Danielle’s Dad
Executive Director
The Autism Project, Silicon Valley

Chapter 10: Danielle at 10

If you’ve read other post on this blog or followed my notes on Facebook, you may have an idea if what Danielle was like at age 2 to 3 years old. At that time, our biggest questions were, “what will she be like when she gets older” and “will this behavior ever change?”
Danielle is 10 years old now, and at age 10 the results are mixed. Danielle has shown tremendous progress in many ways. She is very well behaved in public settings; she has maintained her warm disposition and friendly manner. She is very enthusiastic about school; she is very social and loves spending time with her big sister and her sister’s friends.
On the other hand, Danielle’s behavior at home has not changed much. She still has a fixation with water, though it is easier to redirect her to other things. She still insists on climbing on kitchen counters, running through the house, spinning, opening and closing the refrigerator door and climbing into and out of the dryer. When you stop her from playing in the kitchen sink, she starts opening and closing the refrigerator door. When you stop her from opening and closing the refrigerator door, within 30 seconds she is climbing into the dryer. It’s nonstop and makes for some really tough days when school is out.
If someone had told me 5 years ago that we would be dealing with many of the same behavior issues at home when Danielle was 10, I would have been deeply depressed. Knowing that after 5 long years of constant work and training that we would have seen so little progress may have been too much for me to handle at that time. However, with time comes wisdom (…hopefully), I realize that the past 5 years was not just about Dani’s progress with autism, it was also about my progress with autism. I needed the past 5 years to understand the tremendous blessings that this family has received. It is not about what Danielle hasn’t accomplished, it is about what she has accomplished. Looking at it from that perspective, we are very fortunate. The list of what Dani can’t do is fairly extensive but not if you compare that list to the one we had 5 years ago. My point is, as parents of children with developmental disabilities we must learn to recognize and celebrate every single accomplishment and every bit of progress our children make. Anything else is unfair to the child and to the parents as well.

This brings me to a second topic that all caregivers and parents of children with ASD must eventually face, what part of this behavior can be attributed to the disability and what part of this is simply bad behavior? It’s a critical question, the consequences of which could greatly influence the lives of the special needs child, the parents and siblings. If a parent assumes that all behavior is due to the child’s disability, they can become overly permissive. A lack of boundaries is detrimental to any child, especially a child with developmental disabilities.

On the other hand, a parent/caregiver who assumes that strict discipline is the key to controlling all behavior is setting themselves up for disappointment and frustration, as well as setting their child up for failure.

So, what is the answer? I’m not going to pretend to have an answer for everyone but I do know what works for us. As Danielle is maturing, her understanding of what is being said has become very clear. There are still some complex requests that she doesn’t seem to grasp but otherwise she is very sharp and extremely resourceful. Danielle does however, still get fixated on things; her favorite object of attention is still running water. If Danielle is fixated on running water in the sink and I tell her to stop and she doesn’t, then that is her disability.

When I walk over to Danielle, turn off the water, make eye contact with her and say, “stop that”, her focus or “fixation” is temporarily broken. This is where the behavior comes in; Danielle now has an opportunity to make a decision, she can do as I ask or she can go back to what she was doing before I stopped her. Interestingly, if Danielle decides to go back to what I stopped her from doing, she will usually give me a “sneaky” little smile and she'll stare at me as she begins her mischief all over again. It’s the ultimate in defiance and she knows it. That’s a behavior issue and something that gets addressed immediately. (Unfortunately for us, it’s hard to get upset with a kid who’s laughing at you the whole time you’re scolding them. Just try your best not to crack a smile).

EYE ON THE PRIZE: KEEPING ALL STUDENTS SAFE

For those of you who do not have children enrolled in our public school's special education programs, you may be shocked to hear that such barbaric practices still occur and must be legislated. Hundreds of children with special needs are seriously injured each year by various practices described below:

Copyright 2010 by Tricia and Calvin Luker. Permission to forward, copy and post this article is granted so long as it is attributed to the authors and www.ourchildrenleft behind.com.

Parents, parent advocates and self-advocates, attorneys, educators and medical/mental health professionals throughout the United States have been working for years to create federal legislation that would prohibit the use of seclusion and restraints throughout America’s schools. We have expended this effort because we have seen the effects of thousands of instances where children who expect us to protect them have been hurt or killed by being secluded or restrained. We are acting to protect the children.
On December 9, 2009 we achieved our first hint of success when the Preventing Harmful Restraint and Seclusion in Schools Act was introduced in the US House of Representatives by Congressman George Miller of California and in the US Senate by Senator Christopher Dodd of Connecticut. The House bill, now renamed, “The Keeping All Students Safe Act” has passed the House and been sent to the Senate. The Senate bill remains pending before the Senate Committee on Health, Education, Labor and Pensions [HELP].
Why do we need this bill? The primary reason we need a federal law prohibiting the use of seclusion and restraint is because many states currently have no prohibition against the use of seclusion and restraints, while other states have individual legislation regulating the use of seclusion and restraint without uniform enforcement provisions or federal reporting requirements. Without federal legislation ALL American children are at risk of injury and death from the use of restraint/seclusion . Here are the provisions as passed by the House in The Keeping All Students Safe Act:

Mechanical Restraints: Prohibits
Chemical Restraints: Prohibits
Restraints that Interfere with Breathing: Prohibits
Restraint/Seclusion in IEP: Prohibits as a “planned intervention.”
Allow seclusion/restraint use only if there is an emergency AND if less restrictive measures would not work (a 2-part requirement) : Sets this two-step standard. First, there must be an emergency presenting imminent danger of physical injury to self or others. Second, if less restrictive measures would resolve the problem, R/S cannot be used.

Monitoring children in seclusion/restraint s: Requires face-to-face monitoring unless unsafe for staff and then direct, continuous visual monitoring required.
Terminating the use of seclusion/restraint : The restraining or seclusion must end when the emergency ends.
Use of aversives: Prohibits aversives that compromise health or safety.
Parental notification if child is restrained/secluded: Requires same day verbal/electronic notification of parents and written notification within 24 hours of each incident.
The bills as passed by the House and as introduced in the Senate permit the Secretary of the Department of Education to withhold funding for those districts that violate the provisions of the bills. They also extend the power of the state Protection and Advocacy systems to investigate instances of unlawful use of seclusion or restraint.

WHAT IS THE STATUS OF THE SENATE BILL?
The Senate HELP Committee has not held any formal hearings on its bill. There has been significant informal discussion with Senate staffers concerning whether to include the provision prohibiting restraint/seclusion in IEPs, as well as other proposed modifications. These informal discussions are continuing. There may be a push to have the bill considered before the late summer Senate recess.

It is vital that you know that these discussions are going on within the Senate and that there is a possibility that the Senate might pass a bill that would not prohibit the use of restraint/seclusion as a planned intervention in a student’s IEP. Now is the time to educate ourselves about this issue so that we all can be ready to advocate for our children’s safety at the national level once the Senate bill has taken its final form and is presented for debate.

Here are the links to the bills as passed in the House of Representatives and as introduced in the Senate:

H.R.4247.RFS – Keeping All Students Safe Act – as passed the House

http://www.opencong ress.org/ bill/111- h4247/show

S.2860 – Preventing Harmful Restraint and Seclusion in Schools Act – as introduced in Senate:

http://www.opencong/ ress.org/ bill/111- s2860/text? version=is&nid=t0:is:127


Here is the link to the Council of Parent Attorneys and Advocates’ position statement:

http://www.copaa/. org/news/ position% 20on%20HR4247% 20and%20S2860. html


Here is the link to the Government Accountability Office report on restraint and seclusion:
http://edlabor/. house.gov/ documents/ 111/pdf/testimon y/20090519GregKu tzTestimony. pdf

Here is the link to the National Disability Rights Network report on restraint and seclusion:
http://www.napas/. org/sr/SR- Report.pdf

Here is the link to the Council of Parent Attorneys and Advocates report on restraint and seclusion:
http://www.copaa. org/pdf/UnsafeCO PAAMay_27_ 2009.pdf

Finally, here is the link to the Alliance to Prevent Restraint, Aversive Interventions, and Seclusion paper, “Myth of Fact: Restraints and Seclusion More Torture than Learning Experience”
http://aprais/. tash.org/ toolkit.htm

These links will help you see the scope of the problem of restraint and seclusion for yourself and to evaluate the bills so that you can express your opinion effectively. We invite you to join us in our concerted effort to tell our federal legislators – particularly our Senators -- why the bills are so important to all of our children.

We cannot understate the importance of the fact that federal legislation has been introduced to prohibit restraint and seclusion. We have been working for this for many years. Now that the bills are in Congress, let us unite to improve them and to pass them as quickly as possible. They must pass this session of Congress [which ends in December, 2010] or we go right back to square one in 2011. We can and must do this to protect our children from seclusion and restraint once and for all. We cannot do it without your help.

Tricia and Calvin Luker
http://www.ourchildrenleft/ behind.com

Copyright 2010 by Tricia and Calvin Luker. Permission to forward, copy and post this article is granted so long as it is attributed to the authors and www.ourchildrenleft behind.com.

What is Systemic Advocacy?

Systemic Advocacy is when action is taken to influence or produce systemic change to ensure fair treatment and social justice for all citizens. Changes may be pursued in legislation, government policy, policy and practices of agencies providing services to people with disabilities.
Strategies for this may include collective advocacy, advocacy development, community development, community education, campaigns, resource development and lobbying.


                         Goals for Systemic Advocacy

1. Positive changes in legislation/protection of existing legislation.

2. Positive changes in government policies.

3. Changes in practices and policies of services (generic and disability).

4. Increased access to generic services by people with a disability.

5. Increased participation by people with a disability in community activities.

6. New service development in response to identified needs.

7. Changes in models of service.

8. Issues raised by advocacy taken up by government/ services/ community.

9. Safeguarding and protecting rights of people with a disability.

10. Changes in community behavior towards people with a disability.

11. Development of effective networks and coalitions.

12. Improved quality of life

2009, The Autism Project, Silicon Valley Advocacy Institute

Autism Speaks 100 Day Tool Kit

Autism Speaks has a wonderful book(s) called the "Family Services 100 Day Kit".
Great information for parents and caregivers...Good stuff for service providers too.
Visit Autism Speaks' web site at:
http://www.autismspeaks.org/community/family_services/100_day_kit.php

ADVOCACY WORKSHOPS

The Autism Project Silicon Valley
The Autism Project, Silicon Valley works to assist individuals, coalitions, groups and networks that empower the community to effectively participate in the decision making process. We accomplish this in the following ways:
1. Provide training(s) on the concepts and practices of advocacy.
2. Assist in building coalitions and networks that work on addressing social justice issues.
3. Preparing Community Advocates who can support other groups to include advocacy in their programs.
4. Helping concerned individuals and groups develop their advocacy campaigns.

The Autism Project is offering an advocacy workshop for individuals, caregivers, guardians and service providers from 10:00am to 5:00pm on Saturday, August 7th at the Silicon Valley Independent Living Center; 2202 North First Street in San Jose. This workshop is being provided Free with the support of the SVILC.
Workshop Agenda:
-Advocacy: Historical Perspectives

-Rules of Advocacy
-Independent vs Systemic Advocacy

-Role of the Advocate
-Nature of Conflict

Though our focus is disability and educational advocacy, the rules and guidelines for successful advocacy efforts are universal in their application. Whether you advocate for cleaner streets and neighborhoods or for greater accessibility in our educational institutions, this workshop focuses on the techniques and skills required for successful advocacy.
There are 20 spaces available for this workshop and reservations are first come, first serve basis. Please RSVP to theautismproject@sbcglobal.net by August 1st.
This is not a legal seminar.

Contact:
Brian Miller
Executive Director
The Autism Project, Silicon Valley
theautismproject@sbcglobal.net
Visit Us Online at:

www.tapsiliconvalley.org

www.specialneedsdirectory.org

Chapter 11: It's The Little Things

I was on the phone with a representative of Blue Shield, trying to get some clarification regarding our benefits and Danielle’s speech therapy. After a lengthy conversation, the Blue Shield representative said that I needed to talk to someone else and offered to give me another “800” number to call. Then came the question that I hoped she wouldn’t ask, “Do you have a pen or pencil so you can write down this number?”

This is the kind of thing that drives me nuts. All I need is a pencil. However, I’m not really that particular; it could be a pencil or a pen. I’d settle for a marker, a piece of chalk, eyeliner, anything will work. I’m searching the kitchen drawers, the family room, bedrooms; every possible place one could hide writing utensils.

I know I’m not going to find anything to write with. The fact is we don’t allow writing utensils of any type to be readily accessible in our house. We have washed and repainted more walls and surfaces than you could possible believe. If Danielle gets her little hands on a marker, pen, pencil she feels obligated to express her artistic side by writing on any and all possible surfaces in the house. Walls, floors, clothing, drapes, counter tops, bills, anything that sits still is in danger of being graphitized.

When talking about little kids, most people know what the “terrible twos” are. The terrible two’s usually start somewhere around 18-24 months and they could last a year or more. It’s a tough time for parents and siblings as well. Danielle’s terrible twos started at about 18 months and they haven’t stopped, yet. She is entering her 7th year of terrible twos. Imagine a child that has the size, strength, life experience of an 8 year old, combined with the energy, curiosity and stubbornness of a 2 year old. That’s daddy’s girl. Danielle is constantly in motion.

The list of contraband doesn’t stop with writing utensils. That is just the tip of the iceberg. The list is long and comprehensive
.
Scissors. An obvious choice. Danielle loves to cut things, especially bills, checks and things we try to keep out of her reach. It is interesting that she seems to target things that she knows we would not want her to have. Lately her target seems to be family pictures.

Knives. Another obvious choice but not really for the obvious reason. Danielle loves to cut food. If she gets a knife, she goes to the kitchen and cuts tomatoes, onions and any food she can find. Though I must admit, watching her cut onions is absolutely hilarious. The more she cuts, the harder she cries and the harder she cries, the more she cuts.

Keys. Danielle has figured out what keys work with what door. That includes the keys to the truck, the car and the garage. On more than one occasion, I’ve found her in the garage sitting in the truck. Fortunately, she’s sitting in the back seat but I suspect that won’t last long. It’s just a matter of time…

Bottles, Bowls and Containers. Danielle has a fixation with liquids. She loves to pour things out and refill them with water. This is one of the more concerning issues for our family. On the lighter side, Danielle has a habit of pouring out your most expensive cologne or perfume and refilling in with water. Of course, you don’t know what’s happened until you decide to put it on and you realize you’ve been had.

Of deeper concern, is the more dangerous aspect of this behavior; Cleansers and other household items that could injure her if she comes in contact with it.

You may read this may say, “These things are typical concerns for any parent when it comes to raising a child. What’s the difference?” The difference is that Danielle is entering her 7th year of this behavior. The difference is that a two year old is not big enough or strong enough to pose the problems that Dani does.

Danielle’s fixation with water has created more than a few problems for the family. We had gone through a 5-year period where we had to keep the bathrooms locked at all times. Danielle would go into the bathrooms and fill the sinks with water and sometimes flood the bathroom. That was the preferred scenario. The worst-case scenario is that she would go into the bathroom and play in the toilets. Any source of water was an invitation to play. This is probably the most difficult thing for me to deal with. As a result, we had the cleanest toilets in town. However, no matter how often you clean a toilet, it is a toilet! The idea of her putting her little hands in a toilet and splashing around just makes me sick to my stomach. Imagine having to lock your bathrooms for five years? Recently, Danielle’s come to understand the function of the toilet so that is no longer a worry. We still have to lock the restrooms. She still likes to play in the sink and she will take four baths a day if you let her.

About a year ago, I had to give in to the one thing I had been fighting for quite some time. I had to put a bolt lock on the inside of our front door. In order to open the front door, you must have a key to the house. This is something I’d been thinking of doing for months however I was concerned about the danger of securing the front door with a bolt lock. What if there is a fire and we have to get out the front door and we can’t find the key? I’ve tried every possible alternative for the front door problem but Danielle is always one step ahead of me. Our front door has four different types of locks on it. Each lock represents another failed attempt to secure the house from “Hurricane Danielle”. The last couple of episodes convinced me that I would have to take drastic measures to deal with this issue. One day our doorbell rang and when I answered the door, my neighbor was standing there with our new puppy; Danielle opened the door and let Oliver out. Fortunately our neighbor was out front and saw what happened. So, I went to the local hardware store and brought an alarm for our front door. It’s a simple type of alarm that attaches to the door and the doorframe. When the door opens and the contact is broken, the alarm goes off. This is a great idea, as long as you actually hear the alarm. Two days after installing the alarm, the doorbell rang. When I answered the door, my neighbor was standing there with Danielle by the hand. Once again, Danielle just opened the front door and walked out and I never even heard the alarm. So, we made the decision to add a bolt lock to the front door.

We have not only secured our front door and our bathroom doors, we’ve also had to secure our bedroom doors. Mom’s vanity table full of lotions and perfumes and jewelry is just to tempting for Danielle to avoid. All of those bottles that need emptying! We had to come up with a solution to our individual “privacy” issues when it comes to Danielle as well. What do you do when you need to use the restroom and Danielle is “on the loose”?

It might sound silly, but it is a legitimate concern. With Danielle, any moment that she is out of sight presents an opportunity for one of her “adventures”. Two or three minutes in the restroom could be just enough time to climb on the kitchen counter and attempt to reach the top of the refrigerator to get to the cookies, or any of the other schemes she is waiting to hatch. Caring for Danielle requires you to be constantly alert and aware of her location at all times. As a result, we put a lock on the outside of Danielle’s bedroom door. For those times when either Kathy or me need a few minutes of privacy, we have to put Danielle in her room and lock the door. Of course this only works for so long. Danielle does not stand still for being locked in her room for more than a couple of minutes at a time. Living in our home is a lot like living on a ship during rough seas; every time you leave one area, you have to check and make sure you’ve secured all the “water-tight doors” to prevent a catastrophe.

All of these behaviors and our response to them have an impact on her sister. Taylor is probably the most well-adjusted and empathetic kid I’ve ever seen. I’d love to take credit for it but I think it is just in her nature to be that way. I can’t think of anything I’ve done to create such a great kid. Taylor is 13 years old and she still shares a room with Danielle. We have a third room that we currently use as an office but we have been considering giving Taylor her own space. Recently, Taylor asked to re-decorate her room. She is at the age where it is important for her to express who she is. She wanted to put up posters and pictures and personalize her space. So we put up some pictures of her favorite celebrities from her teen magazines and Taylor was pretty thrilled. We talked about what color she wanted to paint her room and about getting some new bedroom furniture. Everything seemed to be fine.

Later that evening, I heard Taylor yelling at Danielle about something so I ran upstairs to see what happened. Danielle had torn every one of Taylor’s posters from the wall. As far as Danielle was concerned, those posters weren’t supposed to be hanging on the walls. That wasn’t the way the room usually looks. I sat down with Danielle and talked with her about the posters and told her that Taylor and Daddy wanted them on the wall. I demonstrated what I wanted by having her watch as I attempted to put the torn pictures back on the wall. I promised Taylor that we’d go to the store and buy some new magazines and posters for her room.

The next day, I went to the store as promised and brought a several new “teen” magazines for Taylor with posters of some of her favorite stars. Taylor was confident that she would be able to hang up her posters without fear of Danielle tearing them down. I was skeptical but I’ve learned not to underestimate Taylor’s ability to work with Danielle. When I went upstairs, Taylor was waiting at her bedroom door with a stapler. She came up with great idea; she would hang her poster on the ceiling above her bed. That was a great idea, why didn’t I think of that? There was no way Danielle could reach them on the ceiling. Taylor could lie in bed and look at her posters and Danielle would have to adjust to it; problem solve. I went to the garage got the stepladder and we hung eight new posters on the ceiling. As we hung the posters on the ceiling, Danielle sat quietly observing our every move. She was watching how we used the stapler and the stepladder and carefully calculating the ceiling height. Watching Danielle watch us was actually comical. Taylor and I laughed the whole time we were hanging the posters. We knew exactly what she was scheming but there was no way she could get these posters off of the ceiling.

Later that evening, when I went to say goodnight to the girls, I found Taylor lying on her back looking at the posters spread across the ceiling. Over in the next bed, Danielle was lying on her back looking at the posters, too. Somehow, Danielle’s “look” was different than Taylor’s. Taylor was admiring the posters, the artistic arrangement, and the placement of them. Danielle was looking at the posters but this was not a look of admiration. It was a look of curiosity, almost a look of wonder. She seemed to be thinking. “Could Taylor and Dad be challenging me? What purpose do these things on the ceiling serve?”

I awoke the next day to find the posters on the ceiling as positioned the day before. However, the past several years have taught me that success comes one day at a time. Four days pass, the posters are still in place and there haven’t been any incidents of note; if you don’t count the one time Danielle tried to use the broom to knock the posters from the ceiling. But that was only once and she only got two swipes in before she was “apprehended”. That was three days ago and everything’s been fine. Danielle seems to have adjusted having the posters on the ceiling so everything is great. The crisis has been settled and Taylor won’t have to move to separate room.

Another week went by and not only were the posters still in place, but more had been added to the ceiling in the girl’s room. One afternoon, Taylor and mom went to their weekly Girl Scout meeting. Danielle and me were relaxing at home and working on a puzzle. Suddenly, Danielle decided she had had enough of the puzzle and abruptly went upstairs to her room. I followed her upstairs and she turned on her TV. I asked her if she wanted to watch a movie and received the usual answer; a big giant smile. I assumed that meant yes so I put on one of her favorite movies and went downstairs. It was quiet, I almost felt like I had the house to myself. I got a phone call from my sister and left Danielle to herself for a while. After about fifteen minutes, I heard a very loud “thud” upstairs. I ran up to check on Danielle and there she was, lying on her bed watching Wallace and Gromit. There was nothing out of place or unusual so I went back downstairs and continued my conversation. Within a few minutes, I heard another loud thud and ran back upstairs to check on Danielle. When I opened the door, there she sat at the edge of her bed with that big beautiful smile of hers. Once again, nothing out of place but something was happening. That loud thumping noise was a bit discerning.

Perhaps it’s Danielle’s need for pressure kicking in, again. Danielle occasionally needs to have pressure applied to the bottom of her feet; like a deep foot message to calm her down. The use of pressure to help children is very common. Danielle sometimes wears a weighted vest in class to help her with her sensory perception. There are times when she will jump up and down in an attempt to self stimulate and fulfill her need for pressure on her feet. She must be jumping up and down upstairs. It sounds like someone dropping a bowling ball upstairs. After my third trip to check on Danielle, I decided to ignore the “jumping”. After a few minutes, the noise was so annoying that I stepped outside to continue my telephone conversation.

Thirty minutes later, Taylor and Kathy returned from their Girl Scout meeting. Taylor went upstairs to her room and within minutes, I heard a commotion upstairs. I ran upstairs and as I entered the bedroom, I saw Taylor’s posters, all twelve of them lying on the floor. The “thumping” and thudding” noises I heard were Danielle jumping from her dressers and from her bed to reach the posters on the ceiling. The posters were hung flush on the ceiling. I couldn’t believe she was able to pull every one of them down. I felt both a sense of disappointment for Taylor and a sense of pride in Danielle’s determination, no matter how ‘misplaced”.

Obviously, Taylor was really upset with Danielle over her posters. After all, this was as much her room as Danielle’s. Why should she have to make all of the concessions? The only sure solution to this dilemma was to give Taylor her own room. So, I offered to turn our home office into a third bedroom for her. This wasn’t the solution I was hoping for but it was the only sensible answer. I told Taylor that I thought it would be difficult to get Danielle to accept the changes that we’d like to make to the bedroom. Danielle was very accustomed to the way things were and change was something she struggled with. I reminded Taylor of the struggles we had putting a TV/VCR in the room.

“Remember how Danielle would throw the TV off of the stand every time we’d leave the room? We finally had to attach L-Brackets to the dresser and secure the TV/VCR to it with small bungee cord. It would probably be best to for you to have your on room.” I thought Taylor would be thrilled at the idea of having her own room. To my surprise, she asked for some time to think things over.

About an hour went by and Taylor came downstairs to talk with me, “Dad, sometimes Danielle gets up in the middle of the night and gets in bed with me. I don’t know what she would do if I wasn’t there for her so I’d rather not have my own room right now. Maybe in a couple of years when Danielle gets older I can get my own room.” Of course, I was thrilled at Taylor’s decision. I was proud of her concern for and her commitment to her little sister. I was proud that she would put the needs of someone else before her wants. I was proud because her decision meant that I didn’t have to give up my office.

It’s been six months and the last set of posters Taylor hung on the walls are still in place. The walls over Taylor’s bed are covered in posters of her favorite stars, even Danielle’s side of the room a set of posters on the wall. I must admit that I was skeptical when Taylor decided to try and hang posters in their room for the third time. I really thought she was setting herself up for more disappointment but Taylor proved me wrong, once again. The solution was a simple one; so simple it never even occurred to me. Taylor recognized the obvious solution was to involve Danielle in the process of decorating the room. Instead of asking me to help her hang posters, she had Danielle help her hang them up. It was a brilliant solution. Danielle helped arrange the posters and Taylor showed her how to use the stapler. Instead of forcing or imposing change upon her sister, she enlisted her support in implementing change. What a wonderful lesson for us all to learn.

California Healthcare Fiasco

May 13, 2010, Taken from my Facebook page:

HERE ARE THE FACTS:
* Health Insurance premiums in California increased by 95.8% from 2000 to 2007, while median earnings only increased a mere 19.3%. The median yearly wage in 2007 for California was only $30,702, but the average health care premium for a family was $12,194. This means that premiums grew 5.0 times faster than wages.

* In California, approximately 6,555,000 non-elderly people spent more than 10% of their pre-tax family income on health care costs in 2008. 77.25% of those people have insurance, but are underinsured. 5,064,000 Californians with insurance spent more than 10% of their pre-tax income on health care costs, and 1,321,000 spend more than 25% of their income.

* By 2016, projections show that California families will have to pay close to $25,500 for health care or over 41 percent of median household income. This would represent a 90.3 percent increase over 2008 levels.

* In addition, more and more Californians have been forced into the exorbitantly expensive individual market, as unemployment reaches massive heights. As of December 2008, 1,731,800 California residents were unemployed. That reflects a loss of over 652,000 jobs statewide last year alone, increasing the state unemployment rate by over 3 percentage points.

* If the state keeps losing jobs at the rate it did last year, 2,778,504 people in California will be unemployed by 2010. 48.35% of insured Californians depend on their employers for their health insurance. If nothing is done to stem the economic downturn and reform our health care system, 506,110 California workers will lose their current health coverage.

* While 209,349 people will likely enroll in COBRA, which lets workers who lose their jobs continue their health benefits at their own expense, the high cost of COBRA will force an estimated 296,761 people to enroll in Medicaid, fend for themselves on the private market, or become uninsured.

* This year California faces a $35.9 billion budget shortfall. As a result, the state has already proposed cuts that will cause more than 429,000 adults to lose health coverage. As of 2007, 19% of all state spending has gone to Medicaid and SCHIP. $35.4 billion went to spending on Medicaid alone.

* As of 2007 there were already 1,232,218 uninsured children in California, and more than 5,360,938 uninsured adults. 1,780,823 of uninsured adults in California also live below the Federal Poverty Line. California's economy lost as much as $32 billion because of the poor health and shorter lifespan of the uninsured in 2007. That equates $4,900 per uninsured California resident.

* Of the top 10 employers in the state of California, 1 of them is a Healthcare Provider. According to the US Census, 1,172,614 individuals work in the Heath Care Sector in the state & make an average of $4,320.26 per month, which accounts for $5.06 billion in wages per month.