Uvalde Elementary School

Its unimaginable that less than 10 days after posting about the Buffalo mass shooting, another tragedy has hit our country.  As of this morning, 19 children and 2 adults have been killed in Texas by an 18-year-old with assault-style rifles.

I remember the paralyzing fear I felt any time something would happen at school while Tyler was in the building.  Being less ambulatory and cognitive than other students, he would be entirely at the mercy of a bad situation.  He wouldn't have the ability to run, hide, or even fight back as the situation would warrant.  First, your mind goes completely blank while your brain fights to place all focus into one place.  Then, within a second, the brain fills with a million thoughts.  I'd almost instinctively try to tap into his mind to decipher what he might be seeing or thinking.  

One day perhaps 15 years ago, I received a call that no special needs parent (or any parent) ever wants: "we don't know where Tyler is".  I remember the blood draining from every part of me.  Fighting for information, fighting for the sense of where he could be, and fighting the urge to panic.  A supervisor in the care agency had come to our house to check on him and his day caregiver, and they were not there.  The caregivers were not permitted to remove him from his property.  They checked the park and other nearby areas but neither could be found.  While it was easy to consider the 100 logical possibilities, it was just as easy to imagine the scary ones.  Ty was out there with someone where he wasn't supposed to be with no means of defense.  He was essentially alone to fend for himself.  Fortunately the caregiver returned shortly after everyone came to the house to investigate.  She was instructed to stay off of the property so I couldn't interact with her, and she was immediately fired.  She never revealed where she went with Tyler.  Tyler seemed to be in no level of distress, and a head-to-toe exam did not uncover any concerns.  I'm still sick that I don't know where he was.

Image that nightmare 1000 times more terrifying.  Parents gathered yesterday in a reuniting building to learn the fate of their small children.  Unbearable hours had already passed while they prayed for the best but feared for the worst.  One by one it became reality for some families.  One report said the the screams and cries of agonized families could be heard in the parking lot.  Parents finding out that their young child, maybe 7 or 8 years old, spent their final minutes alone, bleeding to death on a floor.  Forever they will wonder if their child called out to them or simply cried silently while dying.  

Sadly, nothing will change.  Sandy Hook changed nothing and neither will this.  Gun-rights activists are already lining up their statements about our failing mental health systems and need for more armed guards.  There is truth to both of these statements, but their goal is to deflect all talk away from the actual weapons themselves.  80% of Americans support background checks, however, legislation stalls and does not pass.  If the 2nd amendment is "the rights of the people", why isn't the 80% also the rights of the people?

Lets pray that somehow we find a way to never allow another parent to feel that sense of panic ever again.  

Needing People - More or Less

There are times that I throw up my hands and say that maybe I will just become a hermit living on the beach and eating turkey and cheese sandwiches all day.  While its true that I can be frustrated with humans in general, I do like interacting with people.  Sometimes I need a little time away to re-energize and go back to the race.  I also think an interesting question is...would you rather have 100 friendships, or 10 close friendships?  The older I get, the more I feel that I choose the latter.

My children are currently experiencing very different needs as it pertains to peers.  Neither is right or wrong, but both show how different siblings, and people in general can be.

Tyler had a housemate for a few years that was a pretty good fit.  "K" was higher functioning, and understood how to avoid Tyler's triggers.  After "K" moved away, Tyler got another roommate, but that had opposite results.  Tyler became moody, defensive, and just generally unhappy.  Obviously this was no fault of the new person, it was just not a good fit, compounded by a run of incompetent oversight.  Once that arrangement was disbanded, we requested that Tyler be permitted to remain living in the residence alone, with only his staff there.  It was a blessing that this was granted, and now Tyler is the sole resident.  The changes in him have been staggering.  He is so much brighter, happier, and energized.  He interacts with everyone at church and looks forward to his Sunday milkshake afterward.  He is stronger and more verbal than we have seen in a long time.  In his case he needed less distraction from other people and more time to be a solo pilot through his journey.  As long as he has his support group and family to remind him how much he is loved and cared for, he is happy.

Sam, on the other hand, has experienced more need for interaction and support.  We are excited to end this coming week by allowing her to spend a day with her beloved pen pal from Charlotte.  It will be their annual get together at the beach.  For 6 years now, our once little girls have met at the beach and enjoyed a wonderful friendship.  

For those of you not familiar with the story, Sam was at the beach with us when she spotted a little girl playing nearby.  The other girl "S" was staying at the same building we were, so the girls made plans to see one another at the pool and the beach.  S's family and ours played along and cleared time every day for the girls to use the pool and beach together.  Sam would wake up in the morning and watch the beach from our room to see the second S hit the beach.  Once she saw S was on the beach Sam had no rest until she was able to run down.  S is very mature and patient which is especially good paired with Sam's rather bold and impatient personality.  Once the week was over, we exchanged numbers and encouraged the girls to stay in touch.  I make sure to see when the Charlotte clan will be at the beach so we can meet up for at least a day.  Its a friendship that may just stand the test of time and distance, but we shall see.  

It seems funny to me that for one of my children I am advocating for them to be alone, while doing the opposite for the other.  Its an example how the typical world and the autism world can be so many miles apart.  Its also yet another lesson in how the goal is to have happy children, and not "normal" children.

Be well and God bless.    Tom

Our Self-Inflicted Wounds

This weekend we witnessed yet another mass shooting in the United States.  We also witnessed yet another example of the racist divide in our nation.  We continue to do this to ourselves, and we have yet to have the courage to stop it.  We CAN stop it, but we choose not to.

Every time this happens, I will take to this blog and be a voice for those who distain the violence.  I've decided now that no one event will cause this country to change its mind about the role of guns in our society.  Columbine didn't change anything, Las Vegas didn't, Orlando didn't, and saddest of all...Sandy Hook Elementary didn't.  Some in our society manage to make the issue about something else, like mental health, for the sole purpose of protecting their sacred gun rights.  To them, dead children or a few innocent dead black people in a supermarket is an acceptable price to pay.  They won't ADMIT that out loud, but it is 100% true.  If they gave a shit they wouldn't argue about registering guns, background checks, or capacity limitations.  They don't want any regulations, and if that means innocent people die, so be it.

Racism is also to blame.  We, as Americans, spend our time thumping our chests about how we are the greatest nation on earth, while at the same time continuing to be a nation run by old white men.  When Obama was elected President, gun sales rose in historic numbers because of the fear of a black uprising (whatever that means).  Gun sales then declined as dramatically once the the black uprising didn't happen.  Today we use the Trump rhetoric to thinly vail racist principles.  "Make America Great Again" equates to "Make America White Male Again".  Trust me, I hear vailed racism every single day.  Anyone using the term "those people" when talking about any non-white group is a screaming racist behind closed doors.  Try a little social experiment...consider the percentages of whites, blacks, and Latinos living in our country....now count the same groups at a Trump rally.  See if the percentages are the same.

Organized religion is also to blame.  Let's be completely honest, none of the religious leaders will talk about gun violence.  Period.  Gun rights are a conservative talking point and they would never bite the hand that feeds them regardless of the lives being lost.  Abortion?  Oh you bet they will throw their hat into that ring.  The "sanctity of life" is on a sliding scale politically.  Prior to the children at Sandy Hook being born, the evangelical right would have been more than happy to pass legislation to protect them.  Once they found themselves at the end of an assault rifle....meh....not so much.  

Until people begin to CARE...nothing will change.  And I don't see that changing any time soon.  We are in a "me" culture.  I'm not talking about the kids....I'm referring to the adults.  A teacher I know explained to me that the school children were very compliant when asked to wear a mask during COVID, but the parents were horrible.  We saw signs on some of our neighbor's lawns accusing schools of taking away the freedom of our children (even though a million people have now been killed by COVID).  As a society we are not only entitled, but ignorant.  That is a hopeless combination.

The hate has to stop.  The gun violence has to stop.  The racism has to stop.  Our turning our heads because of political allegiance has to stop.  Left and Right has to stop and turn into RIGHT and WRONG again.  There used to be values that didn't hinge on political ideology.  We respected the law, our church, our leaders, and doing right by others.  That's been replaced by Jan 6, Trump, walls, guns, and hate crimes.  

Meanwhile there are 10 dead Americans, minding their own business at a grocery store, gunned down because somebody didn't like their skin color.  And not enough people give a damn.

How Far is Too Far?

Special needs families have a very delicate balance that we try to maintain.  Unfortunately, we also deal with more variables than the typical family does, which makes that balance even more difficult to maintain.  Shifts in any form, be it politics, social values, or even weather, can have serious consequences to our way of life.  You will find that many special needs parents become nervous when changes happen, because typically they are for the worse and not the better.  That's not pessimism, that's fact.  I've been Tyler's Dad for 30 years and never have I said "WOW!  I can't believe how much funding is being put into our special needs kids!  Now we have plenty!".  

As Tyler's Dad, I try not to need anyone more than what is necessary to fulfill his needs.  But that alone requires A LOT of people.  We have to hope that those people are kind, empathetic, and interested in the common good.  Unfortunately, I will give you a sad truth: empathy is becoming more uncommon.  Empathy is endangered and that scares me.  

Believe me if you like, or choose not to....but there is proof all around us.  All you have to do is drive for 5 miles on any occupied road.  At the first stoplight there will be someone in front of you that won't be paying attention when the light goes green because they will be on their cell phone.  They believe that whatever conversation they are holding is more important than your safety and wherever you are trying to go.

Governor DeSantis is in a pissing match with Disney over his new education law.  Personally, I'm not upset about the law itself, but his reaction to Disney's reaction.  Instead of turning the other cheek or encouraging Disney to use the channels available to challenge a law, he used his political power to change a 50-year-old zoning decision that has the potential to have severe economic impact on lots of people that could care less about this feud.  This is dangerous.  And frankly, I'm more disappointed with the people who openly support this type of ramrodding for purely political one-ups-menship.   What happens if the next Governor decides that we spend too much money on special needs adults and we should group them by 10's in large group homes to save the tax payers money?   How far is too far?

On the radio I heard an ad for a political primary that promised to fight "idiot socialists".  First of all, most of the people listening to that ad are not educated enough to understand what a socialist REALLY is.  It's a scary term that gets thrown around to rile up the uneducated.  But again, I don't have a problem with someone wanting to speak against socialist ideas, its the use of the word "idiot" to enflame one groups hate for another.  We have already seen a riot on our Capital....so how far is too far?

Representative Greene stood up in the middle of a speech by the President of the United States and shouted at him.  In our country we have a zillion forums in which to speak such as Facebook, Twitter, news outlets, newspapers, and the list goes on.  She has the freedom of speech she needs to state her opinion one hundred times over.  Flouting the level of disrespect in those actions is dangerous.  What if we devolve into every speech becoming a chaos of shouting and disgusting displays of ignorance?  How far is too far?

If you are over the age of 40, you grew up during times when none of these actions, by any faction, would have been tolerated.  There were always lines that we didn't cross because we knew they were WRONG.  Now we are accepting abusive behavior when it suits our overall agenda.  That is frightening.

What's worse, in my opinion, is that we don't call things for what they are.  Instead of weakly defending what we know is wrong, why not tell the truth?  Just say..."I understand that we have a problem with bigotry in this country, but as a white middle-class person I prefer my leaders to be white males." Or...I understand that we have people that go to bed hungry every night, but I don't care because I was able to get mine."  Or....I know a lot of innocent people die due to gun violence, but I find my freedom to be more important than innocent lives."  At least if we are going to ignore the problems we should admit the real reasons we have them in the first place.  This latest social deterioration is due to middle-class white Americans being threatened by anyone different wanting an equal seat at the table.  They are threated by homosexuality, threatened by Muslims, threatened by Black Americans, threated by Hispanics, and threatened by science.  Someday, they may become threatened by those with mental disorders.  

And maybe someday we will wonder.....how far is too far.  

Tyler's Sunday

We had a great time with Tyler yesterday.  After church we celebrated his birthday by taking him for some Mexican food.  He loved the food, but he was much more interested in interacting with his family.  It was so nice to see him so smiley and engaged with everyone.  Its easy to tell that Tyler currently feels very safe and comfortable with his life.

Its hard to wrap our brain around what life has brought us over the last 6 years.  We have experienced some dramatic losses and equally dramatic victories.  I'm proud to say that we have kept our head up and fought for the important things along the way.

One question always seems to come up around Tyler's birthday or other holidays, which is "what can we do for Tyler's birthday?.  After all, he doesn't truly need anything that isn't already provided for him.  He isn't a gamer, he isn't into using a phone, and he doesn't drive.  So what does he need?

A better world to live in.  That's the way that we can truly honor Tyler.  We can reach out to just ONE person and make their life a little better.  Maybe a person is going through a person tragedy and needs to hear some encouragement.  Maybe someone just needs a hug and to hear everything is ok.  Perhaps you have lost contact with someone and they would be overjoyed if you just dropped them a note to say you are thinking about them.  

This is how we honor Tyler.  It takes a lot of dedicated people to care of Tyler which is the most wonderful gift he could receive every day.  So take those gifts and pass one on to someone else.  

Be well and God bless.  Tom