In a Nutshell

Happy 4th of July! I hope you did something fun! We went to our cabin and once again spent the better part of the long weekend lumberjacking. After cutting down and cleaning up hundreds of dead lodgepole pine trees over the years, we are beginning to see the light. Not just figuratively, but also literally. Thinning out the trees has allowed the sun to shine through and the forest ground cover is full of beautiful wildflowers.

Travis joined us for a couple days. I was proud of him. He packed for himself, remembered his med box, and drove himself up. Every once in a while he likes to get away from his home and some of the drama in his life. He ended up spending the bulk of his time there on his phone. We recently broke down and got wifi connected at the cabin. We realized during Covid-19 that if we had internet there, Tracy could have worked from there as well as from our home. I hope that Travis will be able to unplug at some point and just enjoy being in nature. I think it would be good for him to spend some time to just breathe.

Last week I mentioned that I had worked on a letter to drop by to Travis’s new psychiatrist. I wanted to highlight his life for her. I felt that we could get her up to speed much faster if she took ten minutes or so reading my letter. I wanted the letter to be as detailed as a doctor might need, but also as succinct as possible, in the interest of her time. My understanding is that this psychiatrist is extremely busy. She comes highly recommended, it took three referrals and almost a year to get this intake appointment.

The letter ended up being seven typed pages. When I dropped it off, the receptionist commented that I was quite organized. Let me just say, as a caregiver you have no choice. You have to be organized.

I wanted to highlight my letter here, even a bit more condensed. Some of my newer readers might appreciate it, they too can get up to speed. When I talk about my blog, I always mention that it is best to scroll down, clicking the older button, and read from the beginning. It’s the best way to understand our story. The letter:

My hope is that you will take 5-10 minutes to read a bit about Travis to catch you up to speed.  I will be at his intake appointment with him.  I will allow him to do most of the talking.  I am not a pushover, I am not easily manipulated.  But when I answer questions from my point of view he, depending on the day, has a tendency to get angry and can end up in a tailspin.  It is his appointment and it is important that you see “him”.

First let me say that he is doing much better since his 10 day stay at Peak View in Colorado Springs.  I had to have a meltdown of my own to get the ER to send him there.  One of the distressing things we were told is that because Travis has an intellectual disability and is autistic it would be impossible to find him a bed. That sounds like discrimination to me, but it wasn’t the first time Travis has faced discrimination and it most certainly won’t be the last.  I simply refused to take no for an answer.

Our family has endured one crisis after another caring for Travis.  But we were in a state of distress like never before.  No one would listen.  I am not surprised when I watch the news and see that another person with mental health challenges has performed an atrocious act.  Our mental health system ignores all of the early signs.  People cannot get a bed in a psychiatric facility until they are an extreme threat to themselves or someone else.

Travis is currently more stable than he has been in years.  The hospital took him off his current meds and prescribed lithium, Invega and Zyprexa.  He is currently taking 1200mg of lithium per day.  600 mg in the morning and 600mg at night.  9mg of Invega in the morning.  Invega under the tongue as needed, no more than 2 per day.

Travis has a med box that a nurse comes and fills once per week.  There is a form that needs to be signed by you periodically to keep that going.  It is an absolute necessity.  The Zyprexa doesn’t go in the box as Travis is to take it as necessary.  I keep some with me in case he gets highly agitated when he is with me.  I have a couple hidden in his home.  He told me on several calls from the hospital that the Zyprexa helps a lot, but hasn’t asked me for any since he has been home.

Since he has become more stable, he has been much more compliant taking his medications.  This is the first time that he has reported to me that he can actually feel the difference.  When he was on a psychiatric med that he didn’t like he would skip taking all his medications.

The hospital nurse practitioner asked me to tell her all of the medications that Travis has been prescribed in the past.  The list is long and extensive.  She asked me if Travis had ever tried lithium.  I said no.  She asked me why not?  I said I had no idea.  She started Travis on it and Travis felt, and we saw, an immediate effect.

I had Travis’s nurse meet me at his home so that I could give him the new medications to put in his med box.  He called Travis’s current psychiatrist, assigned through Foothills Gateway, to get his approval.  He said that he was unhappy with the current meds and he may not refill them.  Now we know why Travis had never tried lithium or Invega.  His current psychiatrist has been seeing Travis for almost 11 years, since Travis was approved for state waiver services and placed on the waitlist when he was 18.

Travis’s primary care physician has been putting in referrals to you for some time now.  Our family was desperate.  His current psychiatrist took Travis off Abilify because he was worried it was causing Travis’s physical health problems.  Travis has been overweight since the medications started in early childhood.  Abilify wasn’t perfect, but it worked better than anything Travis had tried in the past.  His psychiatrist had weaned Travis off it once before and Travis became unstable immediately.  I brought Travis to see the psychiatrist at an emergency appointment and he immediately put Travis back on it.  Travis was a mess.

When the psychiatrist decided to wean Travis off it again I was upset.  The exact same thing happened again.  Travis had exhausted the 2nd generation medications that the psychiatrist was willing to try, so he started prescribing 1st generation medications. 

I understand the need to watch the blood work and keep an eye on Travis’s physical health.  But his glucose number tomorrow is not going to matter if he dies by suicide today.  My argument is that we keep Travis mentally stable first and then work on the physical stuff.  It is not as if we didn’t try several prescriptions in the past. As an aside, now that Travis is feeling better he has been more compliant taking all of his meds and his most recent blood work looked better than it has for a while.  Travis reports that he can actually feel when his meds are wearing off so he has been better about taking them.  All of them.

Travis has also been more compliant with using his BiPap.  I think if he is mentally feeling better, he reports that his brain is more quiet, that he can think.  Maybe he will become more active.  We get that Travis may not live to be 80 based on his physical health today, but it is important that he has quality of life today over quantity of life. 

Travis was adopted at birth.  His birth mother did report that her family suffered from mental illness.  She said her father was diagnosed with schizophrenia.  She was a stranger to us.  She lived in our home for 3 weeks before giving birth.  Travis was born 3-4 weeks prematurely.  His birth mother received very limited prenatal care, didn’t take prenatal vitamins and smoked cigarettes.  She self-medicated while she was pregnant.  There is no doubt that Travis was subjected to trauma in the womb.

Lutheran Family Services completed the birth mother counseling and advised us to walk away.  We didn’t.  I was certain that we could love all the hurt away.  I thought environment could make a difference.  I was naïve.  Genetics plays a huge role.  I know that now.

Travis was a happy baby.  He doesn’t remember ever being happy, but I have pictures.  We started seeing signs of extreme sensitivity.  He refused to wear certain materials based on how they felt or if they made noise.  Socks had to be just right.  No tags.  Hated collars unless the shirt was washed and a bit worn. 

We attributed initial behaviors to personality.  Extreme perfectionist.  Things need to be done a certain way, in a certain order.  Lining up of toys.

Travis was tested by the school district and accepted into the Colorado Preschool Program.  They were mostly concerned about his poor social skills at this point.  Travis started to struggle and show behaviors in kindergarten.  Difficulty making good choices, interacting with others and taking responsibility of his behaviors.

The summer after kindergarten I worked with him daily on letters and numbers, I was determined to break his stubbornness.  He was unable to stay focused.  Even with my 1:1 attention he refused to complete any worksheets.  At the time I believed he was capable of doing the work and just refusing.  We made a reward chart together.  Where he chose the rewards.  To earn a sticker towards the first reward all he had to do was complete a packet of two sheets.  Five minutes of work.  I told him that after he finished we could go swimming, roller blading, riding his bike at the BMX bike course.  All of his favorite things to do.  The only reason he got any rewards is because I lowered the bar.  Thinking if he had some success he would get on board.  It was a very long summer.  This is when I began to realize that something was amiss.

1st grade – all hell broke loose.  He was put on an IEP for an emotional disorder.  Significant attention problems with hyperactivity, social problems, oppositional behaviors in all environments.  Travis started saying things like, I hate my life, nobody likes me, why can’t I be like other kids?  Teacher told me that Travis said he wanted to die, at age 7. 

Pediatrician diagnosed ADHD and prescribed Dexedrine and then Adderall.

Teacher’s comments on IEP: insists on needing help always and on his terms.  Very bossy when playing and aggressive when angry.  Disrespectful.  Climbed under his desk screaming for everyone to shut up. 

2nd grade – began seeing his first psychiatrist, was diagnosed as bipolar.  Prescribed Depakote, Seroquel, Paxil.  Travis had extreme side effects to most medications that he was prescribed.  Paxil made him paranoid.  One day I found him hiding in my closet under my dry cleaning pile, from the aliens.  Stopped the Paxil.  Tried Zyprexa.  When that didn’t work, Ritalin, Clonidine, Risperdal, Trileptal.  All by the age of 9.

Travis began having rage and meltdowns both at school and at home.  He would scream, scratch, hit, kick, throw furniture and punch holes in walls.  We went through a training to learn how to restrain him properly.

3rd grade – Travis placed in a self-contained classroom with 2 other children.  School district was adamant that Travis was capable of learning if he would learn to behave.  Pretty much blamed our parenting.  Even though we had a daughter in the same district in their gifted and talented program.

We began to believe that the prescriptions may be aggravating behavior as opposed to helping it.  The district’s patience was wearing thin.  They began to suspend Travis for his behavior, again and again.  Ten times before Christmas break.  I argued that they were not allowed to suspend Travis if behaviors were a manifestation of his illness.

Travis was suspended the week before Christmas break.  That gave him three weeks off of school.  During this time we weaned him off all meds and started the TrueHope supplement program.  During the break, unbeknownst to us, the district decided that they could no longer serve Travis. 

Travis did the supplement program and all sorts of natural things for about five years. 

Travis was placed, in what was supposed to be short term, in a day treatment program slot in a residential facility in another town.  This placement didn’t feel right from the very beginning.  Travis was one of four kids that came home each evening. All of the other children lived in the facility. The only thing Travis learned there was the F word.  Which he continues to use often in his daily conversation. 

During this time, I got a call from an acquaintance.  He was the father of a boy on Travis’s T-Ball team.  He asked if I had seen the special on Asperger’s Syndrome.  He thought Travis might have Asperger’s.  I bought the book, “The ADHD/Autism Connection” by Diane M. Kennedy.  This definitely sounded just like Travis.

I asked the district to evaluate Travis for a learning disability and autism.  They indicated that they would get the evaluation scheduled.

Travis attended the day treatment center for 14 months.  Until I walked in one day and found the door to the school propped open by a book and walked in.  And found him locked in a cement closet, banging his head on the wall.  We certainly were not shown this room, that they called the “Quiet Room” in notes home, when we did the tour. 

I walked out with Travis that day and notified the district that Travis was not spending another day there.  To which they replied, you can’t do that, we have to have a change of placement IEP meeting first.  Nope.

Travis spent the remainder of 3rd grade and all of 4th grade there.  Notes home: Travis missing out on privileges due to not working in class, needs 1:1 support to complete any work, continually needing to take space, having trouble seeing the connection between his behavior and natural consequences. 

Special Ed Director refused to bring Travis back to district.  We are still waiting on testing.  Instead sent aide to our house for one hour a day and considered that school.  She didn’t have a teaching degree or any experience with special education.  Travis was too easily distracted in our home so I asked the director to find a room in a school building for his one hour a day.

He put me off several times saying that he was looking.  I served our district on the school board for 8 years, so I knew there was a space.  Eventually I had to have the aide meet us at the administration building and told the director my plan was to use his office for Travis’s one hour until he found a space.  Which he did that moment, downstairs in the conference room.  It had a white board and a table.

5th grade – Travis was placed in another residential facility as day treatment student in yet another town. Notes home: losing PE and recess time because he was not focused in class.  For real?  Having difficulty completing independent work.  Cannot go on field trip.  Sending all schoolwork home.

The center told our district that it was necessary to conduct cognitive functioning testing in addition to a psychological assessment in order for them to continue to provide services.  Resulting in an IQ score of 67.  Significant deficits in overall cognitive functioning.  Processing speed fell in the 1st percentile, extremely low range.  Working memory fell even lower than the 1st percentile, extremely low range.

The center wasn’t equipped to handle Travis’s special needs.  Like the last placement, they focused on kids that were dealing with extreme trauma, that were punted from foster care because of behaviors.  Like the last center, most of the other kids were residential. 

Our district brought Travis back to district in 6th grade.  He immediately began to be suspended.  We filed for due process.  District had an evaluation completed by an outside neuropsychologist.  At age 11 Travis got his autism diagnosis.  She also had concerns about his mental health.  She told us that the placements at the treatment centers were the worst thing you could do to a child with Travis’s diagnoses.

She gave several recommendations to help Travis have success in school.  The school also hired an autism specialist from another district that gave several recommendations.  In the list: Travis cannot read or write at grade level and will need oral testing.  He may never be able to complete essay type tasks or tests.  His attention and writing weaknesses will prevent him from getting thoughts on paper.  Writing is difficult for many reasons.  He will need to dictate to a scribe.

District changed IEP to include autism diagnosis in August 2005.  New IEP goal listed: Travis will be able to write a short story with multiple paragraphs on one topic with correct punctuation and grammar.  Deep sigh.

9-7-05 – Travis suspended.

9-13-05 Travis suspended.  He was asked to write a statement explaining what happened in his words.  When he told the Vice-Principal that he couldn’t do it, the VP suspended him for willful disobedience.

Has anyone even read the recommendations that are now part of his IEP?  Or the behavior plan?

9-22-05 Travis suspended.

Due Process Hearing scheduled.  Judge came to our district and held a mediation meeting.  Luckily I had every piece of paper from ever and showed the judge the minutes from meetings held monthly at the out of district placements that were never attended by anyone in our district.  Even though they were invited.  And that we were asking for testing every month.  And the meeting minutes were cc’d to the special ed director.  Who just told the judge that he had no idea that we were unhappy with the placements.

The judge indicated that if we actually had a hearing he would find for us.  He asked what we wanted.  Our district to hire a teacher with autism experience and put her in a classroom with Travis and 3-4 other children with a Para.  The special ed director said he had no intention of doing that.  So the judge asked us then what?

Travis finished 6th grade at school of our choice.  Brideun School for Twice Exceptional children.  It had been open for a few years, but closed at the end of that school year.  Our district paid for the tuition and provided the transportation.

7th grade through middle of 10th Travis attended the Joshua School for autistic children in Denver.  Again the district paid the $65,000/year tuition and provided the transportation.

Remainder of 10th-12th, HumanEx Academy.  Again in Denver.  District paid the tuition and transportation.

I simply couldn’t understand how our district would rather pay hundreds of thousands of dollars to send Travis out of district rather than set up a program that would cost them far less and help other children at the same time.

Travis came back to district and did completed one year of the 18-21 IEP program.  He refused to attend a second year even though it was an option because he was only 20.

Travis was receiving some services through Foothills Gateway while on the waitlist for the DD or SLS (supported living services) waiver.  He was on the MI (Mentall Illness) waiver until he came off the waitlist and began to receive services through the SLS waiver.

We bought Travis a mobile home and paid the expenses his SSI wouldn’t cover.  His SSI wouldn’t even cover the space rent in the mobile home park let alone…  Travis received a HUD voucher after being on the waitlist for a couple of years and we are now his landlord.

Over the years we have had 8 live-in aides.  They last on average 6 months.  The shortest stay was two days by one person, unless you count the guy that quit after he met Travis but before he moved in.  We found a great guy that moved in this past February.  Unfortunately Travis was in the worst place he had ever been with his mental health.  This guy moved out after 3 months.  Which is a shame, because Travis is doing so much better now.

I definitely wish we could go back and have a do-over.  I would definitely reconsider using all the prescriptions that ultimately, in Travis’s opinion, did more damage than good.  He is very angry at us about allowing this to happen, even though we were following the advice of doctors.

If I could have a do-over I would have given up my career all those years ago and kept Travis at home.  Even though I was not equipped to handle homeschooling because of his behaviors, I think that he would have ended up better off emotionally.  He didn’t learn anything from school in those formative years anyway. 

I am Travis’s person and his kicking post.  He calls me several times a day, it’s like he needs to hear my voice to help him regulate his emotions.  I am suffering some major caregiver burnout and have started to implement some boundaries in the interest of self-care.

Travis needs a live-in aide because he is easily exploited.  He is desperate for friends.  Even though he has poor social skills he hasn’t given up trying to be social.  He knows no strangers and invites people he met in a parking lot smoking a cigarette to his house.  We have spent years kicking out homeless people that find their way to his home.  We could tell you countless stories about the danger Travis has put himself in and in turn me when I have to get involved.

We did get Travis set up with the Vitals app.  I did contact a co-responder with the sheriff’s department to share our story in order to feel better about dialing 911 in a crisis situation.  I had lost my confidence in the system years ago when after multiple visits to the ER they just send Travis home.  And when Travis started talking about his suicide by cop plan.

When Travis is unstable he reverts to not being of this world.  He is from another place, where he is a bad ass warrior.  This has been going on since he was a child.

Travis’s current psychiatrist had indicated that he would not refill Travis’s new medications if his blood work showed any issues.  Which completely stressed me out.  The primary physician must have been able to tell that I was, after all these years, starting to get to a crisis point myself.  After Travis’s last visit with him in May, I finally got an intake appointment for Travis with you, yay!  And I had a social worker reach out to me.  She listened, I felt heard, and she said she would reach out to you about our story.

My husband, myself and our daughter are co-legal guardians for Travis.  Our daughter is not involved at this time in the decision making, we were advised to add her in the beginning in case something happened to me and my husband, she would already be in place.

I am Travis’s representative payee for his SSI.  He is unable to make responsible decisions around money.

Travis is seeing a therapist weekly.  I get that your role is medication management.  But I wanted you to know a bit about the person you’re prescribing for.  And I wanted to let you know that he has a family that loves him very much.  He just doesn’t see it that way and blames us for everything that is isn’t right in his life.  Or he says he is angry for being abandoned by his birth parents and is just taking it out on us.

Believe it or not, this is a very condensed version of our story to get you up to speed.  Lol.  Thanks for taking the time to read it.

“There you have it: Our Lives in a Nutshell. Emphasis on nut.” - James Patterson