Mystery Lane

Mystery Lane

Wednesday, December 14, 2016

Sounding Off

It’s been a few weeks since our election and I, like so many others, continue to struggle with the reality of Donald Trump as our President Elect.  I’ve felt a lot of emotions – sad, devastated, disgusted, anger, disbelief, to name a few.  But the one that has been the most difficult is betrayal.  I have felt overwhelmingly betrayed because of Jackson.  How can anyone with any decency vote for someone who feels its ok to make fun of someone like my son?  Especially those that claim to love him.  It hasn’t been easy, and I am still struggling to understand.  Some people have explained to me their reasoning and on some level I understand it.  While I may understand it, the betrayal is still there and I am not sure where to go from here.  Others have said to me that their vote had nothing to do with Jackson and they won’t treat him differently.  But they did when they cast their vote for Trump.  They absolutely treated him differently.  They treated him as if he didn’t matter, as if he was some joke, as if it was acceptable to make fun of him.  To not see that is a real problem.  My son isn’t a joke or an object to be mocked, he’s a human being worthy of love and respect just like anyone else.  I’m not alone in feeling this way.  Over the last several weeks I have had numerous conversations with fellow special mama’s and we have all expressed the same feelings.  Our children have been betrayed by those who voted for a candidate who doesn’t value them.  

When you have a child with special needs, the world around you is a different place than most peoples.  You see things differently and you feel differently.  It’s hard to explain and put into words.  You will just have to trust me on this.  Sometimes it’s a kinder, gentler world to live in.  Other times it can be a harsher, unjust world.  Mostly, there is just a lot of love and understanding of differences and how all people are equal, and not judged on their abilities.  I often wish that every human could have a child with disabilities, I think if that happened then there would really be a chance for world peace.  But not everyone is as lucky as Kevin and I.  I think because of having Jackson as a son, I truly believed no one would vote for Donald Trump.  Seriously, how could they?  Surely Americans didn’t believe all the nastiness Trump spewed.  But I was wrong. 

Apparently, people felt so strongly that something was wrong with our country that they felt a narcissistic, compulsive liar, sexual offender, scammer, bigot was the best option for us.  Those of you who voted for Trump and are reading this are probably wanting to argue that Clinton was a criminal, she killed people, she had email violations and so forth.  I’ve heard the arguments.   I’m not here debating who was better.  I am looking at the person we voted to supposedly run (or ruin) our country.  I could write all day about the scumbugs he’s appointing to his cabinet.  Anti-semitic, anti-human rights, bigots, racists, privileged people who could care less about the people and country they are supposed to represent.  I saw a woman on the news the other night, a Trump voter, expressing her shock and dismay at one of his appointments (a Goldman Sachs, Wall Street type).  It was because of this man that she had lost her home.  She just couldn’t believe Trump would appoint him.  What did she think was going to happen?  That he was going to appoint logical, knowledgeable people who believed in human rights?  Ha!  He ran on a platform of mockery, hate, privilege and discrimination, he obviously was going to appoint like minded people. 

Here's something else that bothers me.  Those who voted for Trump have been coming out publicly saying they did so because they want change.  But how many of those who voted actually did anything to bring about change?  I would speculate that most of them never did.  They sat on the couch watching the news and cursing about how they didn’t like what was happening in our government.  Did they call or write their state legislator?  Did they call or write their Representative or Senator in Congress?  Did they go to their state capitol or Washington D.C. to advocate for change?  Did they ever meet their legislator for coffee to share their concerns or ideas?  Did they keep track of and read legislation that would impact their lives?  Did they testify in any legislative committee on a bill they were against or for?  Probably not.  But somehow they expected change.  I’ve done all of these things.  It’s hard work.  And now I am sitting here with the reality that everything I have worked so hard for over the last few years might be wiped out and destroyed.  Thereby affecting the lives of hundreds of thousands of people with disabilities, including my son. 

Already we have seen thousands of Americans being treated differently because of their color, race, sexual orientation, religion and disability.  It’s happening here in Spokane too.  The day before Thanksgiving I went to a meeting at Spokane Public Schools to support three families whose children have been bullied and harassed since the election.  One young girl at middle school, who is about the size of my daughter, was repeatedly verbally harassed and ultimately physically assaulted because of her Hispanic appearance.  “Build the wall”, “Go back to your country” were common verbal assaults.  You know what country she is from?  The UNITED STATES OF AMERICA!!!  She’s an American.  It’s infuriating that a young girl should have to go through this ignorance.  What’s just as infuriating is that since that meeting we have been working to get the Superintendent, Shelley Redinger, to make a public statement that this type of behavior will not be tolerated in our schools.  But she won’t.  She doesn’t want to upset the voters (i.e. bigots).  So tonight I will go with many others to our school board and strongly encourage them to make a statement.  If they don’t, then some very strong advocacy will start to take place.  I’m already exhausted by what is happening and how people are being treated and the inauguration hasn’t even happened yet.  Even more troubling is that supposed leaders in our community are afraid to step up and do the right thing (shame on Shelley Redinger).  Our country is in trouble and we need strong leaders now more than ever. 

Kevin and I have taken the kids to two peaceful protests so far.  We want to make sure that all those who Trump and his cronies consider to be the less desirables of our country know that we will stand by them, fight with them, and be a safe person they can go to.  I will be going to Seattle the day after inauguration to march along with thousands of others on behalf of women and their rights.  I don’t doubt that this activism will continue the next four years.  I want Sylvia to see us doing these things and understand the importance of being involved in what is happening in our country.  That one person can make a difference.  And that our voices must be heard.  Because she needs to understand that in this family we stand up to hate.  We truly love our neighbors whether they are black or white, gay or straight, muslim or catholic, immigrants, or disabled. 

I have no doubt this post is going to piss off some people.  But quite frankly this is my blog, not theirs.  What I do care about is that my son and daughter live in a country free from hate and harassment.  I don’t want my son to be an excluded part of society, where he isn’t allowed to go to school, we can’t afford to buy his medicine, his only living option is an institution.  I don’t want my daughter to grow up in a world where men can grab her privates whenever they feel like it, where women and their rights aren’t valued and encouraged, where she has no say over what happens to her body.  Those things are more important to me than Trump voters feeling judged or criticized.  They’ve made their bed, they can sleep in it.  I will spend the next four years fighting my ass off so that my children and their rights are protected.  Will those of you who voted for Trump do anything?  Will you ensure that your vote doesn’t take the human rights of millions of Americans away?  Will you fight for policies that will benefit the lives of your fellow Americans?  Or will you sit on your couch and complain?  There’s a saying “Silence is consent”.  Will you be silent? 

If you don’t want to be silent, here’s some great information from Emily Ellsworth, a former congressional staffer, on how to advocate and reach out to your Representatives and Senators:
1. Do your research.
You don’t need to be an expert on how Congress works, but it will help to know a little about its day-to-day operations. (I wrote a short guide that can get you on the right track to understanding the basics of how both chambers of Congress work, how to contact your representatives, and what to say or write when you do get in touch). But here’s what you need to know to begin: You have three representatives to the federal government: two senators and one member of the House of Representatives. When you make your phone calls, you’ll want to limit your contact to these three people, since most offices don’t have the resources to respond to people who are not their constituents.

The House of Representatives and the Senate have similar roles, but there are a few key differences you should be aware of. The Senate is the chamber that handles presidential appointments as well as Supreme Court nominations. So, when you start hearing about confirmation hearings, you’ll want to contact your senator rather than your representative.

If you have a concern about something on a state level, such as funding for education or Medicaid expansion, you’ll want to contact your state legislator. On a state level, you have one state senator and one state representative. The best way to find contact information for them is on your state’s website or with a quick Google search.

2. Create your script.

Now that thousands of people are calling their congressional representatives and jamming the phone lines, there are many different scripts available. One of the most popular is a Google document called “We’re His Problem Now.” If you’re feeling unsure about making a convincing script, the ones on that spreadsheet are a good starting point.

However, it’s easy and more effective to make your own scripts that include your personal story. When it comes to contacting Congress, it’s not just the volume of calls or emails that matters, it’s the message as well.

When you make your script, you can start with this formula:

● Begin with your name and city. Be sure to include that you are a constituent. “Hello, my name is (first name), and I am a constituent from (city name).”
● Briefly and respectfully state what you are calling about. It’s important to condense your message as much as possible, similar to an elevator pitch or a short answer to an interview question. Stick to one topic per phone call, and give any specifics you have, such as bill numbers, names of presidential appointees, or your support for a policy.
● Take a minute and explain why this issue is personally important to you. If you have expertise or a personal experience about a topic, sharing it with a staffer is powerful. It puts a human face to an issue and makes your position more persuasive.
● Ask the staffer if the representative has a position on the issue you raised, or how they will vote on a bill, or if they will issue a statement. This gives the person on the other line a chance to give your representative’s opinion or let you know if they haven’t reached a decision yet.

Those four elements will create a phone call that doesn’t last too long, but gets your point across clearly.

As you start engaging with your representatives, don’t spin your wheels or get burned out by calling every day. Choosing a few key issues that you care about and getting involved with like-minded friends and neighbors will help you know your stuff before you call and reduce the amount of time you spend actually calling.

After inauguration, the new Congress will begin its session, and we will have a clearer understanding of what kinds of laws it will pass. Some of the most important issues will be health care, immigration, national security, and environmental regulations. For instance, funding for a border wall would have to come from Congress. So would the repeal of the Affordable Care Act, or a reversal of the financial regulations found in the Dodd-Frank Act. These are concrete pieces of legislation that Congress will either vote on separately or roll into other pieces of legislation. The best chance to stop these massive changes is by preventing them from coming to a vote or ensuring the vote fails.

During my time in Congress, I found that we were most influenced by public opinion when constituents told us how their lives were affected by bills we were passing. For instance, we heard from many veterans that they wanted more flexibility to choose to participate in health savings accounts provided by their employers. But participating in those benefits meant permanently opting out of TRICARE — their military health coverage. We sponsored legislation that would allow veterans to temporarily pause their military benefits so they could use their employer’s benefits. It wasn’t a piece of legislation that got a lot of press, but it was something that meant a lot to the veterans in our district who were asking for it.

I believe that with a Trump administration, the best places to take a stand are with keeping existing policies laid out by President Obama. If the Affordable Care Act has made it easier for you to access health-care services, call your representative and let them know which provisions are most important to you. If you came to the United States before your 16th birthday and have been working and going to school because of the Deferred Action for Childhood Arrivals (DACA) program, call your representative and let them know that your livelihood and education are at stake.

It’s likely that opinions in Congress will not change overnight. The past few years have made representatives more divided than ever. But staffers and Congress have been listening to the fringe voters for far too long. It’s essential that reasonable Americans start calling and raising their voices to Congress and showing encouragement for sound policy decisions. Regardless of how you contact your representative, each time you make contact, you are making a difference.

Thursday, August 11, 2016

Didn't See It Coming

When I left the blog last Kevin had quit his job and we were heading into summer.  Now, summer is almost over and Kevin has a new job!  Oh and we are leaving Spokane!  Bet you didn’t see that coming.  Neither did we!

Kevin’s hobby for years now has been the stock market and investing.  He’s nothing short of obsessed.  Every night he watches the Nightly Business Report, reads Barron’s and checks the stock market like most of us check our Facebook accounts.  So what better career for him to go into than investments and financial planning.  He’s been researching and looking at different options to change careers.  We went out to dinner with some representatives from Edward Jones and Kevin decided that would be a good fit for him and he began the process of applying. 

Then this happened - right around the same time Kevin quit, so did the Director of EPIC (the outdoor program at Eastern Washington University).  He had only been there for a year.  Kevin had actually applied for the job last year when it opened.  So when Kevin quit and the EPIC director quit, some of Kevin’s employees and co-workers came to Kevin and asked him to consider applying for the job.  It’s a position I have always felt Kevin would excel in and one he has a lot of passion for.  In an effort to give it one last shot, just so there weren’t any “I wonder if…..” in his future, he applied for the job.

Then this happened – we went to Florida for our annual summer vacation trip.  While we were there we celebrated my in-laws 60th wedding anniversary.  After 60 years they are still so much in love.  Watching them brings tears to my eyes and such a deep admiration for the strength of their love.  They are in their 80’s now and there are definite signs that they will be needing help in the near future to continue to live on their own.  Since Kevin’s changing careers, why not do it in Florida we asked ourselves.  We are mountain people and Florida has no mountains (or even hills).  But if we are going to leave the mountains, we might as well do it for the beautiful ocean.  After talks with Sylvia and a little negotiation on my part (I negotiated a paddle board and a house with a heated swimming pool so we can swim year round), the decision was made.  We are moving to Florida!!!!

Then this happened – we came back to Spokane.  Right away, Kevin went to the hiring committee for the Director job and let them know he was withdrawing his application because we had decided to move to Florida.  A couple of weeks later they asked him if he would consider taking the job as an interim position until next June.  I was in Seattle at my Developmental Disabilities Council Meetings when this happened.  I got home Friday night and Kevin says “Guess what?!”  So I dug out our big white board and we began our list of pros and cons of Kevin taking the Director job.  In the end, the job won – we are staying in Spokane for now!  Kevin went into work that next Monday, accepted the Interim Director position with an end date of June 30, 2017.  Come July 1st we are headed to Florida!

So there you have it, a new job and we are moving to Florida.  The kids will have one more year to go to school with their friends (Sylvia is starting middle school so that is important).  I will have more time to prepare for the move.  I am heading to Vero Beach, Florida in October for a week to start scoping things out.  Schools, doctors, therapists, and a place to live are on my list.  So much to do….

If anyone would have told me I would move across the country to Florida I would have never believed them.  I’ve spent my whole life living near mountains and lakes.  It’s going to be quite a change.  I’m going to miss Spokane, Washington state, the Pacific Northwest and all the friends we have made here.  Someday we may be back, or maybe we won’t.  Who knows what will come.  But I’m excited for the adventure ahead of us.  There’s a lot to see in Florida – the Keys, the Everglades, Winter (the dolphin with the prosthetic tail), Disney World (Florida residents get discounted tickets!), cruises to the Bahamas, Daytona, the list goes on.  What matters more than anything is that we will be close to Kevin’s parents and all his family in Florida.  The rest will all work itself out.  “The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences.” – Eleanor Roosevelt

Monday, June 20, 2016


I'm not good at fundraising.  I hate asking people for money.  I'm not very persistent or determined.  But here I am fundraising.

This spring Jackson's teacher raised money for a SmartBoard for the classroom.  But according to the district it wasn't an approved vendor so she couldn't put that particular SmartBoard in her classroom.  Sadly, she had to give the money she raised back.  Which kind of made me mad.  And making a special needs mom mad is not a good idea.  So I went to the principal and had a talk with him.  Basically I asked what I needed to do to get Jackson's class a SmartBoard.  He showed me the paperwork, we calculated the cost, got approval, and I left his office on a mission.  First, I had to see if I could get a good chunk of the money back.  A local credit union had donated over half of the cost so I reached out to them first.  There's no way I could raise all $2500 on my own!  Like I said, I'm not good at fundraising.  Thankfully Inspirus Credit Union agreed to give the money they donated directly to the school to go towards the SmartBoard purchase.  Now I just have to come up with the rest, to the tune of $1100.  Can I pull it off?  Time will tell.

So here's my sales pitch:  The fact of the matter is that no matter how you look at it, special education students tend to get the shaft.  They don't have the same opportunities as our general education students.  And that includes technology.  This past year Spokane Public Schools spent a good chunk of money on technology for Jackson's class.  How much?  I don't know.  No one at the district can answer that question for me.  And what is the technology?  Something called a Smart Table.  Where is this Smart Table?  I don't know.  No one at the district can answer that question for me.  So money that was allocated for Jackson's classroom was spent by someone outside of the classroom, on technology that wasn't conducive to the classroom so they took it away, and it hasn't been in the classroom all year.  Great.  Meanwhile, Jackson's wonderful teacher realized that because so many of the kiddos have visual impairments, the big screen allows them to see the instructional material better.  Couple that with the ability to interact with the big screen (which they do with iPads), and you've got yourself a SmartBoard and technology the kids could really benefit from academically.  Now, of course, there is no money to buy this SmartBoard because the technology money was spent on that Smart Table thingy.  Which brings me to this point of having to fundraise (big sigh).

Which now brings me to this.  If you can help, please do, I'll be forever thankful.  If you can't, I get it.  Either way, share this link on social media if  you feel inclined.  Spread the word!

SmartBoard for Jackson's classroom: