Why is everything a fight with her?
This was our daily, sometimes hourly, lament with Bean. She would fight having her teeth brushed, fight getting her face washed, fight getting in the car seat, fight getting strapped into the stroller. Fight getting dressed; fight getting undressed, fight leaving home; fight returning home. Everything. Always. It seemed that nothing was ever easy with her.
When I witnessed other kids happily going through their daily routine of getting ready and out the door, my jaw would drop to the floor. And these parents, they didn’t have to use the constant creative tactics I did. They just went about their business.
No constant singing of songs to make the tasks fun and inviting. No imaginative turning-their-child’s-mouth-into-a-dollhouse-and-cleaning-all-the-furniture-inside tooth brushing games. No turning on Dora just so they would be distracted enough that mom could quickly slip on their clothes without them even noticing. No funny noises, funny faces, crazy dances, promises of rewards. Nothing. Despite all my research, I could not figure out why Bean had such a hard time with these simple, everyday tasks.
One time when Bean was about 2 years old, we were supposed to leave for story time, which was one of her favorite activities. She couldn’t budge. She wasn’t involved in anything special at home, no TV or art project. She just didn’t want to leave.
I explained that her friends would be there, we were going to hear stories and there would be songs. She still didn’t want to go. I did my best to explain to her, in terms she could understand, that if we did not leave right away, we would miss it, and if she decides she wants to go later, we won’t be able to go because it will be over. She agreed. I tried and tried, but she would not go. I decided to I would have to let her learn this lesson, and next time, certainly, she’ll leave when it’s time.
Sure enough, later in the day, my sweet girl came up to me happily and told me, “OK, mommy. I’m ready to go to story time now! I have my coat! I’m ready to go!”
My heart broke, and I hated that she had to learn this lesson. I explained to her that we missed it, it was over; we have to wait until next week. She, of course, could not completely understand, and got very upset that I wouldn’t take her.
The next time a similar situation arose, I reminded her of the story time incident, and how we would miss this event, too, if we didn’t leave on time. And it didn’t matter. She remembered how sad she was about story time, she remembered that it was because we didn’t leave on time, but she still could not manage to leave home to go her event.
Once we would get to an event, I couldn’t get her to go home. Yes, the very same home she couldn’t bear to leave in the first place. And this was nearly all the time with nearly everything. Playgroup, Gymboree class, library, story time, you name it. It was maddening. We were often the last to arrive and the last to leave. And there was a “fight” on both ends of the trip. It was exhausting.
I continued to wonder about this phenomenon until attending a Mommy and Me class where there was a child psychologist who would conduct a parent Q&A session the last fifteen minutes of the class each week. I inquired about these constant hassles with everyday tasks, and she said, “It sounds like your daughter has trouble with transitions.”
Transitions. That was exactly it! This opened up a door in my mind, and as I mentally calculated all of the situations that were hard for her, many of them required transitions. Transitioning from being at home to going to an event. Transitioning from being at an event to going home. Transitioning from eating breakfast to washing up. Transitioning from evening activities to going to bed. The list goes on and on. Not to mention when plans changed; we would dread those times! Those unexpected transitions were the worst of all.
Now Bean is 9 ½ years old, and she still struggles with transitions. We have read the book The Explosive Child by Dr. Ross Greene, and with the help of the TS Clinic program at Rutgers, spent eight months trying to implement the ideas from the book. It is a process we are continuing on our own, until we are able to resume therapy at Rutgers.
My next big “a-ha” moment was when I learned more extensively about Executive Function Disorder through a webinar offered by NJCTS. The Executive Function skills are the fundamental brain-based skills that get people through every day. They are required to execute tasks such as initiating work, planning, being organized, controlling impulses, staying on task, regulating emotions, and being adaptable and resilient.
I realized that Bean was lacking most of these skills, and the ones she had were weak. And to expect her to be able to go through her tasks as easily as other children did would be like tossing her into France with no knowledge of French and expecting her to be able to speak to the people there in their language. It would be impossible for her to do that, and for me to expect it from her would be insane. I can’t talk her into using skills she doesn’t have, there’s no incentive in the world that can accomplish that!
I’m currently reading Smart but Scattered by Peg Dawson, EdD, and Richard Guare, PhD, and it is fantastic. It is all about these skills that are lacking or lagging, and how to train your child’s brain to develop these skills.
It continues to be a source of frustration and sadness when we cannot arrive on time, when we have to excuse ourselves in the middle of an event, when we have to leave early or late. I know people don’t know, and they don’t understand. They couldn’t possibly. And, quite honestly, part of me doesn’t want them to.
I don’t want them to know what we have to go through to just get out the door in the morning. What takes place in the car while on the way to an event. What transpires between us in the corner behind the coats, while we are trying to convince her it’s time to leave. Or that she should put on her coat because it’s freezing outside. Or that it’s time to stop eating and time to get her shoes on.
I would be humiliated if people saw what we have to go through to just get through the things they don’t think twice about. But then again, maybe I wouldn’t get some many looks if they did know. Maybe if they knew how hard leaving a place is for Bean, I wouldn’t see the sideways glances and hear the offhanded remarks. They mean well, but they just don’t get it.
So, why is everything a fight? Because inside her little body, a battle is always raging. A battle of wills, a battle of senses, a battle so steep, she has no chance of prevailing without a lot of help. And a lot of love. And a LOT of patience.
And us here, battling with her, beside her, until the battle is won.
Since my post last night, I thought of a few things you may or may not already be doing. I know you don’t have an ASD diagnosis, but please read some of the strategies for autism / aspergers as they will very likely help Bean. Other children that are not on the spectrum benefit greatly from visual cues for executive functioning and transitions. We struggled with my son’s teacher last year because he really didn’t buy into how helpful visual prompts could be (despite all the research and proven results!). He neglected to incorporate into the classroom for our son until my son’s melt downs became so disruptive (throwing books, knocking over a desk, squeezing himself into the crack between a file cabinet and the wall and refusing to come out, smacking himself in the head over and over), that the teacher finally gave it a try with the attitude that “he had nothing left to loose”. Sure enough, at the next meeting he excitedly reported how he could not believe how much visual cues had reduced outbursts. My son still had them when the schedule had to change without notice or there was a supply teacher or there was an external force impacting his ability to cope, but the regular, everyday routine in the classroom became achievable and when he did have an outburst over something, it was less severe because there was not a compounding effect. Visuals and a heavy diet of proprioceptive input for sensory integration made the biggest differences in our son. Weighted blanket, compression vest, chew necklaces (the jaw is the first source for the human body to receive proprioceptive input and remains one of the most important throughout life), brushing/walberger technique, head phones, and a quite “break” / study carrol location with social stories, visual prompts and plasticene for squeezing were all instumental in helping our son. Before this, we were on the precipice of putting him on some heavy anti-psychotic medications to reduce rage. There are so many different strategies and techniques out there. Keep writing and maybe someone will share something that clicks for Bean. All the best.
My 10 year old son has Aspergers and TS. Reading your posts brought back a flood of memories. Many, many similarities.between Bean’s experiences and his. We also thought he was just quirky and learned to compensate for his difficult behaviours because we celebrated how smart, creative and amazing he was. OCD behaviours started to arise, sensory sensitivities were causing discomfort that was just too much for him, motor planning prevented him from learning basic things like pushing the pedals of a bicycle, then anxiety and depression arose. My defining moment came when he told me at 7 years, 2 months old that he didn’t want to be alive anymore. The 9 month wait for a developmental pediatric assessment became unacceptable. We took him for a private psycho-educational assessment and this is the first time I ever heard the term Aspergers, but it fit. It explained the sensory processing issues, the difficulties with transitions, the ocd like behaviours, the anxiety and depression. It did not explain the tics, but these were mild physical disturbances that he really didn’t notice… and we had bigger things to now deal with. His diagnosis has been good for him. We are still struggling with people who don’t understand, wait lists for services that are far, far too long and his tics (now confirmed as TS) have worsened, but accomodations, strategies in home and school environments, light therapy for those long winter months (we are in Canada), ABA and behavioural therapy, nutritional supplements and maturation have brought him a long way from where he was 3 years ago. Also, we talk with him about Aspergers and all the difficulties/disorders that go with it so he developments an awareness of his own needs and self-advocacy skills. He is learning to ask for his breaks before he melts down; he is learning to know when he needs his heavy blanket to calm and regulate his nervous system so he can fall asleep. He knows that excersize helps his mood and sensory processing even if he hasn’t found “his sport”. So, with lots of discussion, transition planning and preparation, he keeps trying new activites to see if one sticks… so far wresting seems to be the best one. We have been able to keep him off medication, but we have almost gone ahead with it a couple times. Somehow, everytime we were close things have changed for the better… and we haven’t always known why. Their bodies and nervous systems change as they grow and there sometimes changes that effect their symptoms for the better and sometimes for the worst. For now, he is happy and that is everything… it is absolutely everything. Missy, all my very best to you and Bean. I hope Bean finds a comfortable place of happiness soon. Occupational therapy for sensory integration made a world of difference for our son. Our son will always.have Aspergers, but right now he is learning to live without it defining our every decision. Right now he is able to just get on with living. I hope Bean gets there and you can breath and once again celebrate who she is instead of having to spend so much energy on how she “is not”.
I get what you are saying! Day to day things become so difficult. Transitioning and EFD. Although my daughter who is almost 11 was diagnosed with TS and ADD, I think it is the Executive Function that we need help with. I will read that book and see how I can help my daughter with these skills. Keep sharing your words have helped.
Cindy
Don’t ever be ashamed of your daughetrs behaviors. As you know they are not intentional. We tell people all the time. Educate, educate, educate. Its some of the best “medicine” out there. Best of luck. K
ps. and you and Bean will certainly win the battle
I get it completely. While my son is not as severe as your daughter, I went through the same thing. Picking him up while he was screaming in order to leave a toy store, him not wanting to get out of the car to go into the dentist office when I finally just left him in the car, waited inside and it took him a half hour to come inside, bribing him just to leave the house to go to an appointment that we had, the list is endless. And now that he is 14, things are easing up a bit. But still a struggle. And he is turning out to be a nice boy who people tell me is polite when at their house and thoughtful . Who would have ever thought we could reach that point? You have it right – lots of love and patience (and don’t be too hard on yourself when yours runs low), and you will move forward. best of luck.
My son has issues with transitions also. Keep writing! You aren’t alone.