Experience stories

Caring for a Loved One with Behavior Issues

My daughter’s name is Kaitlyn. She is 24 years old and lives at home with her dad and me. She is not non-verbal, but is not completely verbal either. She has a very hard time expressing feelings and pain. She was born at 38 weeks (due to weak to non-existent fetal kicks/movement). While the doctor thought I was going to give birth to just under an 8 lb. baby, she was only 6 lbs. 9 oz. and 19” long. The doctor knew she had a syndrome at birth, but it took six days to get an appointment with a geneticist to obtain a clinical diagnosis of CdLS. She was in the school system from age 3 (early intervention) to graduating at 22. The school experience, I for one, am glad is over.

For Kaity, behaviors started in earnest, around age 12. We worked with her and a school appointed behaviorist to help her. This just did not work and I was fighting to keep her from being medicated. By the time she was 15, I realized we needed more help and turned to the Foundation. They got us into the next session of the Multi-Disciplinary Clinic for Adolescents and Adults in Baltimore. What an experience!! This provided us with a lot of information to take back to our primary care.


A year ago, we started working with Dr. T. Gaultieri and Amy Boison at NC Neuropsychiatry in Chapel Hill, NC, when Kaity’s medical needs out grew her GP’s ability. They are currently working with Kaity on a cocktail of serotonin increasing medications to help keep her at an even keel and we are just adding a med to assist with the dopamine to see if we can even out what I call the “witching hours”. Kaity seems to be at her worst between 4-4:30pm until about 7pm, each and every day. And it feels like we have tried EVERTHING to help her during this time by the way of: naps, snacks, going for walks, quiet time with music or reading stories. Nothing seems to help.

Over the last 12+/- years, EVERYONE has tried to figure out what “triggers” the outbursts. They are so random and no one (including us) has been able to pin point one item, experience, activity, etc. that sets her off. I take that back… crying babies and sirens are an immediate meltdown. But those are few and far between, as we usually hear them before her and are able to control the situation. We did try taking Kaity to a therapist one summer about 5 years ago as it was highly “suggested” by the school system that we do it. This only lasted a few sessions since there was not any dialog with Kaity and it was all just her dad and I regurgitating what had happened in the past week, etc. The only piece of advice that he gave, that has stuck with us, is that she basically holds on to negative feelings, actions, words, etc. If her brother scolded the dogs, a week ago, to stop barking, this may set her off again because she thought about it again. If she wet the bed two days ago, which makes her very angry, she can think about that and get angry all over again. We also feel that sometimes it is just her acting out because we are not giving her our undivided attention 24/7. She was tested for autism in the late fall of 2019 and has been given a diagnosis of autism with the mentality of a 3y 8m child. This was hard to accept at first because she does do a lot at a much higher level. But thinking about her behaviors and attention span, they truly are at the level of a 3 or 4-year-old.

Kaity directs her outbursts/meltdowns/behaviors towards objects first (house plants, TV, anything sitting on tables, tossing her plate of food and windows), then she will turn on the nearest person (hitting, pinching, spitting, and kicking and destroying glasses). Then on to her room where she will knock over a dresser that is as big as she is. Everything comes out of the other dressers and curtains come off the wall. You get the picture.

After all is said and done, Kaity is always remorseful. Repeating sorry, sorry, sorry, over and over again. At this point we usually hug it out. Sometimes she has to cry it out. Then, as if a switch has been flipped, she goes about cleaning up the mess that she has made in her room, without any prompting and works at it until she is done. Dealing with the behaviors is very difficult for me. I take them personally, so I react before I think, which does not help the episodes. Sometimes we just have to put her in her room and walk away. One time we secured her in her stroller and covered her with a weighted blanket. We will be doing this more! You could see her physically relax. Sometimes, a timer is set and she has to be still and quiet for an amount of time before we will allow her to get up. If she is unable, we talk, and the timer is set again. Episodes can be as short as 10 - 15 minutes, but she has had one that lasted four hours (I really think that one was a delayed drug interaction from a dentist appointment).


I want to be honest, there are days that I really think I can’t take care of her anymore. That I should let Kaity “grow up” and move out to go live her best life, by placing her in an adult assisted living home. It would then enable my husband and me, to live out the rest of our years as most other parents do. But it chokes me up and brings tears to my cheeks to think about it. She has been abused, physically and verbally, by staff, in her own home and at school. She has been lost by staff. She has been denied medical care by staff. And if that is happening in her own home, what is going to happen to her in a different setting, where there is not someone to see what is going on daily and hold the staff accountable? And I decided that would not be the best life for Kaity. Mentally she is 3 – 4. She still sleeps with dolls and night-nights (security blankets). She is not going to understand why mommy and daddy are not there every night to tuck her in and give her kisses. Or why we can’t come to her when she calls out for us during the night. And that gets me through until the next time. It is my goal to keep her with me as long as I am physical and mentally able.

offers this advice to families. “My first feedback for parents experiencing physical
attacks from their child is to remind them that they MUST take care of themselves since this is such a significant stressor. Parenting is hard enough, let alone when the demands of a child with special needs and challenging behaviors are added into the mix.

Find strategies to improve their own sleep, resilience and ability to remain calm and nourished. Classes in yoga, mindfulness and other stress reducers might be helpful. Talk to friends and family and find some time for fun. Seek out local supports for respite from community agencies, your place of worship or friends and family. Spend time with your other children and your spouse.

Ask for help. Breathe.
Julia O’Connor
Ph.D., Clinical Psychology and Professional Development Committee Member at the CdLS Foundation
name with cdls USA
name with cdls USA

Story told in 'reaching out, fall 2020'

Page history
Last modified by Gerritjan Koekkoek on 2020/11/03 14:29
Created by Gerritjan Koekkoek on 2020/11/03 14:07

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