Being Jessica's Mom: Growing up on the Autistic Spectrum

Experiences, all experiences, create brain growth.  Rewarding experiences and stressful experiences can create the growth of new brain neurons (brain cells).  I am in no way an expert in this field and this is not a neurobiology 101 lecture.  But having this information is important because it means that the human brain is open and available to learning, storing memories and regulating emotions through our life time.  Our kids on the spectrum tend to isolate and avoid many experiences.  They also tend to be the kids that get bullied, struggle in school and are often misunderstood.  We can’t control these experiences.  But what we can control is introducing them to new things, encouraging things they are interested in (which sometimes changes…often) and providing them with the tools and strategies to manage things like their sensory and mental health issues.

High school presented many challenges for Jessica (neuron building!).  She had to learn how to navigate social experiences , she traveled to Chicago and Arizona and competed with the marching band.  She studied, she took tests, and she did homework.  She did all of this while her anxiety and depression was developing.  In fact the testament to Jessica’s perseverance and her ability to learn and grow from her experiences was that she came back from a devastating start to her Senior year and graduated!

For all of the experiences Jessica had during high school, that were out of my control, there was one in particular that will always be a moment where time stopped for me and  life changed for Jessica.  I would never have thought about this as a brain growing experience because I didn’t know about that neurobiology back then, but now (years later) I can see the resilience, the trust and cognitive maturity that this experience contributed to.

By the end of 11th grade we had gone through so many medication changes and ups and downs and Jessica had been on medication for seven years,  I came to the conclusion that I didn’t know who Jessy was off of medication, there was no baseline anymore.  We were spinning our wheels and she seemed stuck in a vicious cycle of side effects and med changes with no solid stability (emotionally).  She managed to get through her Junior year in spite of what I can only imagine was frustrating, confusing and lonely.  So I had a conversation with the psychiatrist and Jessica and we all agreed on a plan that would have Jessica completely off of all of her medication by the end of summer(this was what was in my control).  Between June and July Jessica lost approximately 30 pounds that she had put on as a result of medication side effects.  She was relaxed, laughed and was active.  Summer was always more relaxed and carefree, but this felt different.  In August (just about 3 months off of the medication), I took the kids on a trip to Hawaii, a new experience for all of us.  For most of the trip, she was present and enjoyed the activities.  But at least once a day, she would become irritable, snapping at her brother and I and she would refuse to engage or it would take a lot of convincing to get her to engage in whatever we were doing.  But then it would pass, she would go to bed and we would wake up and have another great day.  This seemed more like teen angst in the moment and was manageable (though I think her brother might have a different opinion about that!)

When we got back home there was one week before school started.  I was so happy at the idea that we only had one more year of school to deal with and I was ready for it to be her best year.  Remember, this was a school she had been at for the past four years, as I tell you the next part of the story.

The first day of school was a Thursday.  I pulled up to drop her off as I had for the past three year.  She didn’t get out of the car.  She didn’t want to go in.  I offered to walk her in.  This worked for the first four days of school.  On the fifth day she had an orthodontist appointment mid day.  The orthodontist was within walking distance from the school, she had been there before and the plan was that she would walk back to school after appointment.  No problem…right?  I walked her into school and she stopped in the common locker area and said she couldn’t go to class.  I sat on a bench with her until the first bell rang and then I was able to walk her to class and hand her off to her teacher.  I couldn’t figure it out.(At this point, I had not connected the lack of medication to this “I don’t want to go to school” issue, we had had plenty of those over the years….but when she went to school, she did not need to be escorted in)  So I leave her at school and go to work.  I can’t recall what time it was, but some time after her appointment, I received s phone call from Jessica telling me she can’t go back to school.  My response was, “yes, you can”.  She kept insisting she couldn’t go (it didn’t make sense and in the moment, I did not pick up on the fact that this kid was in crisis).  So I tell her she either walks back to school or walks home, but I was not leaving work (we had a plan).  That is what any other good parent would say to a teenager who was trying to get out of school…well, most teenagers would just not go back, they wouldn’t call their mom and tell them…LOL!  There is that trust and innocence that I love about my daughter!  Probably about 90 minutes later I get a call from that Jessica is at the hospital and that they had been trying to reach me (I am a therapist, I don’t answer my calls during session and it was not a number I recognized).    I immediately call my parents in a panic and ask them to go to the hospital and I meet them there.  Along the way I talk to my ex-husband who tells me they called him when they couldn’t reach me.  Jessica had gone into the emergency room and told them she had a headache.  My ex-husband refused treatment when they called her.  Now I am pissed…..the emergency room FOR A HEADACHE???!!  Here comes the bad parent….When I arrive, my parents are standing outside with Jessica.  I look at her and out of my moth comes, “What were you thinking?!  You have now disrupted everyone’s day over a headache!  We are all standing here at the hospital because you had a headache and didn’t want to walk back to school!”  I suck!  I got the award for worst parent of the year for this one!  How to make your child feel like crap in two sentences.  I’m sorry Jessica!  Had I known then what I know now, it would have been a very different afternoon.

Here is the rest of the story:  I took Jessica home (still irritated and still clueless).  She went to her room.  I left her home while I went to pick up her brother.  When I came home, she was still in her room, quiet, just staring at the wall.  Here is where I lose time….at some point during the evening, Jessica came down from her room and she was very irritable, it did not take much to set her off, I may not have said anything to her, I don’t remember.  What I do remember was her standing in front of me with a piece of twine, threatening to hang herself from the ceiling light (an unrealistic feat, but it was a threat none the less).  When she realized this was not going to work, she escalated, there was no reasoning with her, redirection was not working….she grabbed a butcher knife and held it to her neck!  (Now do you hear me?  Now do you see me mom??!!  Help me mom!)  It was chaotic!  It was the scariest thing I have ever experienced, my heart stopped.  I was able to calm down, lowered my voice, softened back to the mom I know I am and was able to get her to put the knife down (I hear you Jess, I see you, I am going to take care of you).  I called the mental health crisis and they told me to call 911, so I did.  While waiting for the police, I called the psychiatrist who instructed me to give her 50mg of Seroquel (which we had in the house) and she took it without argument, but she was highly irritable and and unpredictable, it had been a long hard day.  So I suggested she just lay down on the couch while I called my boyfriend (now my husband) and he came and took my son to his house for the night.  Ok, things felt more in control and calmer.  Then the police arrived…(to be continued)