Written in 2014 and 2015
November 2020 Note – This writing does not flow. It appears I came back to this over several months in 2014 and 2015 adding my thoughts. I’ve left it in its original, raw state except for a bit of rearranging so writings about the same topic are grouped together.
One blood test, one phone call, one moment in time; drastically changed everything. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioral issues than I ever thought I would need or want to know. The main way that 18p- manifested for Lillian earlier in life was that she had delays with motor skills, articulation issues, and GI concerns. Now at 13 years old Lillian is very hard to understand when she speaks. She simply cannot articulate in the way most of us can. The shape of her mouth and the inability of the tongue, lips, and mouth to coordinate properly are what cause this. She is a smart young lady and has all the words and thoughts she wants to say in her mind, but simply can’t get them all out in an understandable way.
She has always had anxiety and fears concerning certain issues, had problems with unexpected changes, and an inflexibility with schedules. These issues had been mostly manageable. About the time puberty entered Lillian’s life she had an IEP for transitioning from elementary to middle school. She also came down with a bad cold turned into a sinus infection. All of these proved too much for her to handle and she imploded. So began a turn in this adventure that began so long ago.
I now find myself learning about emotional and behavioral issues and Lillian’s inability to cope with situations that cause her to panic or worry.
In December 2014, Lillian caught a pretty bad cold. At the same time we had just attended her transition IEP for moving to middle school next year. Internally, Lillian’s teenage hormones were making their appearance as she had just turned 13 in September. Illnesses take a harder toll on Lillian, even if it is just a cold. She missed some days of school, went back for one day and then seemed to get sick all over again. Her cold had turned into a sinus infection.
After the sinus infection cleared, Lillian refused to go back to school. This wasn’t just a case of Lillian being stubborn and defiant. I could sense a deep fear and high level of anxiety. I tried to help Lillian through this time by addressing and solving whatever it was that was causing the fear and anxiety. During this same time, Lillian’s ability to cope and remain calm seemed to be dissolving. Whenever her schedule was changed or didn’t work out or things didn’t go as she thought they should, she would go straight into a horrific meltdown with an explosion of screaming, hitting, pinching, and scratching. It was lightening fast with hardly any space between something going wrong (in her mind) and the explosion.
At this point, I decided that I needed professional help. In April 2015, I finally located an acceptable psychotherapist that took Lillian’s insurance to work with Lillian and I on mindfulness techniques, dialectical behavior therapy, and cognitive behavioral therapy. I know that there are medications to help with these difficulties but my inner compass is very strong in that I am supposed to try the non-medicated route first. I absolutely do NOT judge other parents for the routes they take on this complicated and complex journey. The part of me that would have judged no longer exists, thanks to Lillian and Thomas.
It was (and is) my intention to try to help Lillian be in tune with her body’s feelings and emotions so that she can recognize when anger or sadness are present. And to then have her use mindfulness techniques and emotional connection to connect with negative (and positive) emotions. First and foremost to get her past the point where she feels out of control leading to screaming and lashing out at others (myself and her brother, Thomas).
This is furthering my own mindfulness learning as I must be mindful when Lillian disconnects. I must also be patient, flexible, and learn how to not take words or actions personally. There are absolutely days and moments my thoughts go straight to, “It’s time to look into medication.” However, once the moment has passed so has the thought. As long as we are making progress we’ll continue this path. Although Lillian has not returned to school yet, we are making slow progress. I use the term we as this is definitely a team effort by all three of us.
She had one extremely huge meltdown turned into explosion this past July. We made a quick stop at the grocery store to get a few items. I was a bit overwhelmed as the store was super crowded. I was trying not to forget what we needed and to carry on small talk with Lillian. We took a few minutes to smell the essential oil perfumes and wonderful handmade soaps. Then we chose a gluten free cookie for all three of us. After this, I decided to return an item since we were close to the customer service counter. The wonderfully kind cashier offered to ring my other items since I only had a few. I accepted. Lillian had caught up with me at this point and once I was finished paying, I could sense her energy shift.
Apparently, there was miscommunication between the two of us about Lillian looking at more gluten free desserts. This quickly led to a volcanic like explosion for Lillian with screaming and lashing out at me. Fortunately, I was close to the exit doors, so I made my way out and headed to the car with Lillian screaming and yelling behind me. I quickly got into the car and invited Lillian to do the same if she was going with me. She was not open to doing any of the mindfulness or other techniques we’ve been learning.
I decided to start making our way home even though she had not calmed down. Perhaps not the best choice in that moment. She was scratching, pinching, and pulling my hair from behind. As soon as it was possible, I pulled over, turned to Lillian and screamed some ridiculously outrageous comments, and decided I must get out of the car. We needed space between us as I was in a great deal of pain from the scratches and she was a big hot mess. Once out of the car, I closed my eyes, took a few deep breaths, and asked to see the situation differently. I opened my eyes and shining up at me from the rock and dirt filled ground was a beautiful red jewel heart. I knew that was in answer to asking to see it differently and a reminder to always respond with love.
At this point, Lillian was ready to do a calming technique and I requested that she do it on her own. She got out of the car and chose to pick up a couple of rocks and study them. After a few minutes we got back into the car and drove home. We’ve not had anything of that magnitude happen since then and I am hopeful this was simply “one step backward” before more steps forward. When this happens for Lillian, one of us has to be fully present and mindful or things can escalate.
When I pulled over there was anything BUT grace flowing from my mouth. After being scratched continuously, and having my hair pulled from behind from the time we left the parking lot; I lost it. So glad I listened to my intuition to pull over and get out. It was what we both needed. I know when this happens it is not the true Lillian and we are making great progress with helping her to notice, feel, and release emotions (centered around mindfulness).
My feelings are that we are all doing the best we can with where we are in our lives; child and adult. I judge no other parent for how they choose to handle this. That has not always been the case. Where there is Love, there is no judgment. Personally, I want to help Lillian learn NOW how to process emotions so that she has a happy and peaceful life as an adult. So that she knows how to handle things when they don’t go as expected and don’t go her way.
It’s so interesting that for at least 4 years I’ve been talking about connecting with emotions with Thomas and Lillian and Lillian does NOT want to feel sadness. Goes straight from sad, to anger, to deflecting the anger in a split second. We are teaching her how to “listen” to her body for the clues that let her know she’s about to get angry.
I have much to learn from Lillian and she has much to learn from me. I know because she verbalizes what she’s saying to herself. It boils down to this: She’s not in control and she cannot be successful. We are giving her new phrases to replace those: I am in control, I can let this dissolve, I am successful. Along with teaching mindfulness activities and I take both of them through a mindfulness exercise at least 4 times a week. Definitely not an easy path, yet, for me, this is the path of Love.
Two more positive moments from the 2015 Chromosome 18 conference … one night she was having anxiety and worries about going out to eat with her friends (without me as I was having dinner with the moms … ladies night). Worried there would be stairs, worried about going to the bathroom, worried about what to eat, worried about it being too crowded. She was expanding, to use her word. I explained to her that she was expanding and that we could not talk about it and come to a solution in her current state (it was bed time too). She agreed to wait until tomorrow to discuss it. The next day when I brought it up, she said, “There’s nothing to talk about it.”
This happened with one other issue too. And I have used this several times now as it seems she wants to discuss things as we are getting ready for bed. I have been successful at getting her to wait until the next day.
She had a huge meltdown in a restaurant on our last night there. First, it took us half a day to even get out of the room to go to the local library. She slept late and took forever doing her “schedule”. This seems to be interfering more and more with us even getting out of the house. Anyway, after we ordered she began to “expand” about not having gotten to everything she wanted to do while there, being VERY sad and angry about the situation.
She was crying and getting louder. I tried to have her wait until we were done eating to discuss, but she was not in a place to agree. She screamed and pinched my arm. I could not get her to do a distraction exercise so had to resort to helping her resolve the issue so we didn’t have to leave the restaurant with me dragging her out. She finally calmed down. Thomas was having great anxiety during this as he saw all the people staring at us.
Lillian has always had anxiety and worries related to certain situations, venues, and schedules. Some of these are stairs, escalators, people with stern voices, automatic flush toilets and hand dryers, small enclosed areas and big open areas. In addition to a fear of all animals and stuffed animals. Some of this stems from difficulties with Lillian’s proprioceptive system and some from sensory processing issues.
I am still on this journey of attempting to learn Lillian’s nature. I’ve come a long way. What I do know, what my internal compass is rock solid about, is that Lillian’s contributions to humanity will not come forth in the typical way of going to school, graduating, going to college, and getting a job (or some adapted version of this).
And something else I know is that it’s okay if there’s a shift within her and she does go the typical route. I feel she is an artist and her contributions are manifesting and will continue to manifest in this way. As I write this, I realize, she’s got something figured out that many of us strive to figure out our whole lives. How to express oneself. And how to express oneself in a way that benefits humanity and spreads loving-kindness.
Lillian loves and enjoys life. In fact, she is confused when, at her prompting, I or those around her don’t stop what they are doing and BE in the present moment, enjoying life and being happy.
November 2020 Note: This writing turned into a 4,000 word article contributed to a multidisciplinary journal for the Australian Institute On Intellectual Disability, published in 2015. To read the polished and final article, go here …
November 2020 Update – Six years later … We have come such a long way from this time. Thankfully, the severity and occurrences of meltdowns has drastically decreased. Lillian began using botanical oil two or three years ago. That and maturity were huge factors in helping.
I also wrote a letter to her meltdowns in 2016 that was published by Elephant Journal. If you’re interested in reading that, go here …
See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.