We have all witnessed the beautiful stories of families of children with special needs…you know the ones…the dedicated parents who give all they have for their child. Some give up their jobs, devote all their time to their child, and said child goes and does something incredible in the world. The family is proud. It is the feel-good story at the end of a news broadcast. We, as spectators, smile, retweet or share the story on Facebook, and everyone lives happily ever after.
I love these stories. I’m the queen of sharing them. But they often leave me wondering: Will our story have a happily ever after?
There is a reason for my wondering. The last several months have been extremely difficult.
Aggression. I’ve discussed it before. Braden has had pretty significant aggressive outbursts for most of his life. When he was four, he started attacking me when he was having a meltdown.
Just to clarify the meaning. A meltdown is something different than a temper tantrum. Many people get these two things confused. A meltdown is something a child cannot control and there are many factors that can cause a meltdown to happen. Basically, tantrums are an angry outburst, while meltdowns are a reaction to be overwhelmed either by outside stimuli and sensory overload or by emotions the individual is unable
Braden’s go-to aggressive behavior during a meltdown was to bite and pull hair. I’ll never forget being in the elementary school parking lot when Braden, upset over a car honking, yanked my hair, pulled me to the ground, and bit my leg so hard, it drew blood. All this while a group of moms stared in horror…not one offering support or help…but that’s another story for another day.
Another time he bit my thumb with such force, I couldn’t move it for over a week. Nerve damage.
He was four years old, and I remember telling Mike, “I’m so afraid that when he gets older, he is going to kill me.”
Don’t get me wrong. My son does not have murderous intent. He is a kind, gentle, and loving soul. But when he was in the middle of a meltdown, I was afraid.
Mike never felt the same way. He couldn’t understand how I was feeling. Mike’s 5’11”, and weighs 175 lbs. I’m 5’4” and it’s none of your business how much I weigh.
When he was about 10, Braden’s doctor gave us a medication called Risperidone. It’s an anti-psychotic. Just that name, anti-psychotic, is a scary thing, right? He told us that when we got to the point where we felt unsafe with our son, we should give it to him. We honestly never thought we would need it or use it, but we held on to it just in case.
One night, when he was about 12, Braden had a meltdown. Mike was out for the evening (a rare occurrence), and it was bad. I don’t remember why he was melting down. I just know what happened as a result. He came after me, ripping out chunks of my hair and scratching my face. Our daughter was home and heard me screaming. She tried to intervene, and he started pulling her hair as well. She ran back to her room and called our friend who came over to help.
We were heartbroken. It was one thing for him to hurt me, but we couldn’t handle him hurting his sister.
We put him on the medication.
For years, the medication helped Braden. He was calm and didn’t suffer any of the side effects we had read about online. Not only did we all feel confident we wouldn’t be hurt, but Braden was happy. He smiled so much more and didn’t rage as he once did.
Until last May.
Braden was getting ready for his vocational training program. He was dressed and seemed quite agitated. I asked him what was wrong and he started stimming (which is a way of tuning out sensory stimulation that is bothering him and helping him feel better).
Being a mom, upset that he was upset, I tried to comfort him. “Oh Braden, do you need a hug?”
I saw it in his eyes. The flash of anger. The intense look of fear. I should have realized that his amygdala, that fight or flight area of his brain, was firing. I should have stepped away. Instead, I went in for the hug.
And he attacked. He grabbed my hair at the roots. I fell to my knees and he kept pulling. I screamed. Oh how I screamed. I hadn’t experienced so much pain at the hands of another human being in my life, and I was afraid. I flashed back to that conversation Mike and I had when he was four, “I’m afraid he’s going to kill me someday.”
Mike came running up the stairs and had to physically remove Braden from me. It was not a pretty scene. In the end, I was crying, Mike was crying, and Braden…he was sobbing hysterically. This attack was out of his control, and after it all, I believe he felt terrible about it.
It was after this attack that Mike finally understood my concerns. His level of concern now matched mine.
PTSD is real. For weeks afterward, if Braden moved suddenly, I would dart to the other side of the room. Sometimes I didn’t even know how I ended up there. It was that automatic. Eventually, we fell back into our normal flow and I no longer feared to be in the same room as my son.
In the summer we had another event happen, and I’m not ready to share that one. I will just say it was scary and it raised our concerns to threat Level “Oh shit!”
We went to see Braden’s doctor. His previous doctor, the one who prescribed the Risperidone is retired. His new doctor is fabulous and we’ve learned so much from her through this process. At this appointment, we shared with her what was happening. Our natural question was, “Should we increase the dosage of the Risperidone?”
Her response: A look of concern with these words, “Have you heard of Dystonia?”
To be continued…Part Two coming soon.