Monday, December 1, 2008

Ella's Meltdowns

I will have a section where I track my oldest daughter's meltdowns... primarily for my own need to keep track and analyze common set off points, but also so that my readers can learn more about Ella. Maybe you have an Ella. maybe you know someone like her, or a mom who has a daughter like her.

Recently, we celebrated Maddie's 6th Birthday. While I realize that loud noise can be an assault to Ella and cause her protective sense to go into overdrive.. she thrives on socialization, and rarely has any problems in loud environments that involve playing. I realize that the gifts and party for Maddie may have given her cause to feel jealous. But I don't really think those factors are large contributors to her meltdown during the party.

Situation: The partygoers are assembled in Ella and Maddie's room. They are all playing with the princess Barbies that Maddie received as gifts and the ones we already have. There is a squabble between Ella and her little sister Annelise (age 3) over a crown for a Barbie. Ella falls apart, screaming and crying about how Annelise stole her doll's crown. I ask Annelise if she took it, and she said yes. Ella yelled that I should make Annelise give it back. I asked to give it back and Annelise said no. Ella freaked out and lunged for the crown, and Annelise shrank back in fear.

I told Ella to back off and calm down, and that I would get the crown. Ella continued to howl about the crown, and I told her that she needed to go into another room and pull herself together, and that she should come back when she was calmer. She harumphed off angrily, still crying. I suggested that she use her time to do some of the exercises and techniques that her occupational therapist has shown her to do when she is feeling out of control. I suggested wall pushups, and she refused, and said that she wasn't going to do any of those things. She was out of the room for less than 5 minutes, and returned. She fell apart again within moments, this time about a different doll, I think. She was clearly not composed enough to join the group, so I told her to leave the room again and come back when she had pulled herself together. She came back a second time, and was able to keep herself composed for the rest of the party.

I was trying to coordinate a group picture, and left the room briefly to address her both times she left. My husband and the other adults were in another part of the house.

I was surprised that she showed her meltdown to her friends. I suppose it was because she was in her own house, but she had never pitched a big fit before in front of her friends, or Maddie's friends. They were all very confused about why Ella would throw such a fit, when the older girls, ages 8 and 7, were well able to share the dolls and make suggestions to help pacify or distract the younger girls, aged 3-5.... those same suggestions were made to Ella during her fits, but she did not accept them, and the 3-5 yr olds did.

Last Sunday, my husband was out of town. I took the kids to church, and was under the mistaken impression that I was to help out in the 2 yr old room during the worship service. I had told the girls that we would be in there rather than in church. I discovered that I did not have to work in there, and told the girls that we would be attending worship. Maddie pitched a little fit and said she was really hungry and couldn't we go get lunch instead. Ella started freaking out and sat on the floor in the hallway and refused to move. I had to threaten the loss of television for the day to get her to stand up, after trying several times to get her to obey without the threat. She came inside and sat down with Maddie and I after the singing. She harumphed into her seat, and I told her to watch her attitude. She threw her croc shoe at me. (We sit on the front row on our side of the church, so her activity was not shielded by rows of pews). I took her arm and again told her to get control of herself, and she reached over and pinched my arm hard. I asked the people behind us to watch Maddie, and I took Ella out into the hall. I expressed my frustration and displeasure to her over her actions. I told her that I understood that she was expecting to be in the 2 yr old room and that plans had changed and that I knew it was difficult for her to get adjusted, but that she needed to try. She refused, and slid down the wall to the floor. She told me she wasnt going to get up. I took TV away for several days as a consequence. She finally decided to come sit down. She drew pictures for the rest of church.

We had no more issues until we went to Target around 5:20 that afternoon. Before we left our friend's house, Ella mentioned that she had sweated through her shirt and that she was starting to stink. I told her she could get another shirt while we were at Target. On the way there, I had a discussion with the girls and told them that we only had a short time to shop, so we would not be late for choir at church. Everyone said that they understood and that there would be no tantrums about not being able to find something they wanted in the dollar aisle.

We spent the first 10 minutes in the girls clothing section, with Ella trying on shirts over top of her tshirt. She was becoming more and more agitated that she couldnt find a shirt. I suggested doing push fives with me there in the store, which is an activity that her therapist suggests to help get her organized... we lock fingers and push against each other. She refused and began to get more out of control. Ella fell on the floor, weeping about not wanting to stink. She stood up when I told her to, but continued to wail as we walked through the store, and threatened to run back to the girls department alone if I wouldnt let her get a shirt. I allowed Ella to go look for shirts while I was across from the department in the dollar aisle. She took ten more minutes and had one more breakdown about not finding a shirt until she finally found one.

I realize that because I had told her she could get one, she expected that she would be coming out with a shirt, and that making her leave the department seemed like a change in plans and a personal affront to her dignity that she wouldn't get a shirt. I indulged her looking for more than twice the amount of time I was willing to take to find a shirt, and I was irritated that she felt that her finding a shirt was more important than us being on time to choir where I was supposed to be helping out.

Overall, Im not sure I feel like she is having more breakdowns than usual.. I think she probably has at least one a day, and some days as many as 3. It is just that she is having fall on the floor, weeping tantrums in public, and the disparity between her actions and her age is just getting more pronounced. I recall that in April, we had a trip to the store much like this, where she was on the floor in the checkout lane as well as between the exit doors. We had another fit like this in Walmart about a year ago where I was having to drag her along as she held onto the handle on the cart and refused to make her feet walk and drug between my feet. This does not happen every time we go out. It doesnt happen at the end of the day more often than at the beginning of the day. It is almost always about her rigid thinking about what is going to be happening and how something has changed.. and it is also the fact that once she starts throwing a fit, she cannot stop herself and ends up getting more and more consequences piled on her as she continues to say terrible things, or punch me in the chest, or throw a shoe at me, or whatever.

Considering that her younger sisters have never thrown even one fit each in public, whether with Ella or while Ella was at home, it bewilders me how she might just be a brat and want her own way, etc. Her therapist would likely point to sensory overload, difficulty with transition, rigid thinking, and sensory modulation dysfunction issues when looking at these situations. And while I agree that each might play a part, there is a point at which I guess I feel like the fact that she is 9 would give her some degree of maturity, especially in public. We certainly have fits like this at home, but 1) my mama skills are not on display at home and 2) I can send her to another room to calm herself (even if I have to escort her there with her hands wrapped around my leg and hold the door shut myself.) I am curious about whether her emotional maturity is also much lower than her chronological age and if I should have different expectations for her behaviour, like that she reacts more like a 3-5 yr old most of the time, and try to work with her differently because of that.

It is possible that her hormones are at work here, but we have had these same fits for years. I think we are in a season where they are coming more often, but it waxes and wanes. When she is having a hormonal day, she sheds more tears and seems much more sad when she melts down. Not so much tantrum and anger 3 year old. Both situations, at the party and at Target, were much more 3 year old looking to me.
Thanks for reading. I will post more positive things about Ella soon, but this was on my mind to share today.

Thursday, October 9, 2008

Occupational Therapy Evaluation

Ella is 8 yrs and 9 months old. She was found to have a lack of proper myelination when she was about 6 years old, due to yearly MRIs and EEGs from her seizure disorder followup. The myelination experts told me that her delays and sensory issues were due to the lack of myelination, but never explained it to me, and did not do any further followup.. just prescribed OT, PT, and Sensory Therapy. She had OT and PT (but not really any ST) when she was 6-7 yrs old, and I was not very happy about the place she was getting services. We switched to another office, and I love her therapist, and how comprehensive this evaluation was!

I will be meeting with her OT next week to go over the eval in more depth, but I wanted to post the findings here. I have been aware of Ella's gross and fine motor delays and sensory issues for almost 3 years, but she was officially diagnosed with Sensory Processing Disorder including Sensory Modulation Dysfunction, Auditory Processing Disorder, and Developmental Dyspraxia. The eval reported that on most of her issues, she is 2 standard deviations below the norm.

I am looking forward to working with the therapist to FINALLY get Ella going with a sensory diet. And I am interested to figure out how her low tone and postural issues, Auditory Processing Disorder, and Visual Motor delays are affecting our schooling, and what I can do/buy/provide. Let me know what you have used or are aware of if any of this looks familiar!

I have the full report if you're interested, but here are my notes.

Sensory Processing Disorder

Definition of sensory integration:
Sensory integration is the neurological process in which the brain organizes and interprets sensory information for use in daily life. Effective sensory processing allows a person to efficiently respond to environmental stimuli. Sensory input is received through several systems.. tactile, auditory, visual, taste, smell, proprioceptive (muscle and joint receptors in the body which provide information regarding the body's position in space), and vestibular (input to the receptors of the inner ear which respond to motion and changes in head position that contribute to the development of balance reactions, muscle tone, ocular control, bilateral integration, and the body's relationship to gravity). Sensory input provides a child with information about her environment. Appropriate sensory processing is necessary for a child to interpret environmental information and use it to successfully and purposefully respond to the demands within that environment.  All sensory information has to be organized and processed in order for an individual to respond adaptively. Some children may have difficulty processing, or making sense, of sensory input, and as a result of "faulty processing" demonstrate a variety of behaviors in accordance with their neurological thresholds.

Behavioral observation:
during fine motor evaluation, she was cooperative and talkative, demonstrated appropriate social skills and appropriate eye contact with therapist. After demonstrating some difficulty with suspended equipment, she quickly gravitated toward more sedentary activities such as drawing and writing.

 She needed prompting from therapist to more fully explore her surroundings.
 Ella was noted to become more animated and talkative after participating in several gross motor activities. She was observed to have trouble with motor planning to access several pieces of equipment and needed coaching from the therapist to keep trying when the activity proved to be challenging.
Ella used several compensatory strategies when faced with challenging gross motor activities.
She was noted to try and redirect play to more controlled activities such as pretend play, she would try to talk her way out of activities, and she also exhibited flight behaviors and refused to participate in activities completely.
Ella was able to develop, explain, and implement problem solving strategies to help modify activities so they were less challenging in some instances.
Ella was observed to seek out vestibular input through spinning, she appeared to need more intensity than other peers to reach her threshold, as evidenced by holding her head back to intensify rotary input yet never reaching a dizzy state during the activity.
Ella had difficulty motor planning through multi step directions given by therapist and demonstrated some trouble sequencing actions that required timing or complex movement patterns, she did better with these tasks when they were visually demonstrated by the therapist or a peer.
 Ella displayed poor balance and low postural tone as evidenced by difficulty walking over large floor pillows and difficulty shifting weight to access suspended equipment.

Part 2:

Sensory Defensiveness:
in individuals with sensory defensiveness, the protective system overrides the discriminatory system, often resulting in hypersensitive responses to sensory input. It is an unusual degree of anxiety or discomfort as response to sensory events in the environment which are typically not threatening. These responses typically take the form of fight (reactive, explosive), flight (escape, distractible), or fright (reluctance, whiny, tearful). It can effect activity level (arousal), behaviour, and emotions as well as motor responses.

Ella exhibits sensory defensiveness in reaction to certain auditory, tactile, visual, and some types of vestibular sensory input that her body perceives as harmful.

  Ella exhibits significant hyper-responsivity, or avoidant behaviors to tactile input. Once she reaches her high threshold for tactile registration, she responds quickly with intense behaviors that may be considered extreme for the type of stimulus. For example, she may have a tantrum or a meltdown when asked to do grooming activities like brush her hair, or wear itchy, uncomfortable clothing. These behaviors are characteristic of a Sensory Modulation Disorder.

Oral Sensory:
Averse to meat and rice, and other food textures. Food texture avoidance is a characteristic of a Sensory Processing Disorder.

  Ella exhibits hypersensitivity to auditory input. She is fearful of loud and high pitched noises often causing her to run away from these experiences or cover her ears. She is easily distracted in noisy environments, she has trouble working when there is background noise present, and she often has difficulty paying attention to auditory commands when in busy settings. Ella displays characteristics of an Auditory Processing Disorder as indicated by hyper-responsive behaviors to auditory input.

Ella demonstrates some hypersensitive behaviors in response to visual input. She also has some trouble with letter reversals when writing. These characteristics can indicate difficulty processing visual input.

Sense of muscle and joint activation, which provides information to the brain regarding the body's position in space and the grading of one's movement. Receptors in the muscles and joints are stimulated through activities such as pulling, pushing, climbing, jumping, and other resistive type of activities. Proprioceptive input is organizing to the nervous system as it brings the individual to a calm alert state.

  Ella displays hypo responsive behaviors in regard to proprioceptive processing. She was able to complete more challenging and complex tasks after engaging in activities that provided strong proprioceptive feedback. She was more calm, organized, and alert.

Important for behaviour and motor coordination de to its contributions of balance and equilibrium reactions, muscle tone, coordination of eye and hand movements, ability to use both sides of the body together, arousal, and some aspects of language development.

Ella displayed both over and under responsiveness to vestibular input. She displays poor endurance and tires easily. She tends to seek out movement activities especially when she is trying to concentrate during homework or school related tasks. She has difficulty interpreting some types of vestibular input such as a fear response with heights. Ella also sought out spinning activities during the clinical observations, she displayed under responsiveness to rotary (going in a circle) input and seemed to need more of this type of input than other children to elicit a dizziness response. Ella's challenges with crossing the midline, letter reversals, delayed visual motor skills, and poor motor planning are also consistent with vestibular processing challenges.

An individuals state of alertness. Some people have high arousal level and are constantly on the go, and have a hard time calming down. Others present with a low arousal level in which they appear more lethargic, disinterested, and disengaged from their environments. Ella has difficulty modulating her arousal to a "just right" place. She tends to stay in a constant state of high arousal where she is constantly on the verge of shifting into sensory overload. Her sensory sensitivities to certain inputs can cause her arousal to escalate quickly and result in over stimulation. which can result in protective responses such as anxiety attacks, shut down, limited frustration tolerance, and flight from activities. It was noted was noted that Ella demonstrated more appropriate organization and attention to task through the gross motor portion of the evaluation, and this modulation was partly contributed to the intense amount of proprioceptive input these activities provided her.

Motor performance:
  Ella's range of motion and strength appeared to be within normal limits, however, she did exhibit characteristics of low muscle tone. She also had difficulty maintaining an upright posture when walking over oversized pillows on the floor, indicating that her postural responses are diminished due to her under-responsive vestibular system. When allowed to seek out input in a sensory enriched environment, Ella sought out intense vestibular input such as swinging across a zip line or spinning in the hammock. These activities have an alerting and organizing effect on Ella. She had difficulty with gross motor planning and execution. She has difficulty figuring out how to coordinate her body to complete complex motor tasks, like copying movement patterns demonstrated by the therapist. She also shows difficulty coordinating movements that cross the midline of her body, indicating difficulty with bilateral separation. Overall, Ella’s gross motor skills are below average for a child of her age. She is quick to fatigue, and has a low frustration tolerance for challenging activities. She also has difficulties with sequencing and motor planning.  Ella's difficulties with planning and organizing complex motor movements are consistent with the diagnosis of dyspraxia. Based on observation and parent report, her primary areas of need are within the organization and initiation stages of praxis.

Visual Motor Skills
Ella's visual motor integration and motor coordination skills are lower than average for a student her age. Her visual perception scores are higher than average for a student her age. When faced with a motor coordination component to a visual perception task, her abilities are taxed. From a developmental dyspraxia standpoint, Ella must cognitively put forth more effort to accomplish these types of tasks due to the motor challenges involved. Although her brain is correctly and efficiently processing visual input, delays with motor skills impair her visual motor integration skill. Ella was able to copy basic shapes, but presented with more complex pictures, she had difficulty with sizing, spacing, and directionality of lines to copy more complex forms.

1. Occupational Therapy using a sensory integrative approach and fine motor development are recommended to address the issues that are negatively impacting Ella's ability to function at home, school, and in the community. 1 hr a week

2. It is recommended that a Therapeutic Listening home program be implemented with Ella. The primary goals are to decrease auditory sensitivity to loud and unexpected noise, and to improve auditory processing to help Ella filter out extraneous background noise.

3. It is recommended that Ella participate in a sensory diet at home and at school. A sensory diet is a plan of sensory based strategies used throughout the day to assist with appropriate sensory processing and modulation of arousal. Ella's sensory diet should specifically include proprioceptive and vestibular input since these are currently means by which she is seeking organization.

4. Ella may benefit from a therapeutic skin brushing protocol to facilitate body awareness, modulate arousal, and decrease tactile sensitivities.

5. Ella should continue to participate in therapeutic strategies to help her improve her writing skills, handwriting without tears handwriting program, ocular motor skill development, improvement of distal motor coordination, and strengthening of trunk and upper extremities for improved postural and distal control.

I am also going to talk to her OT about putting together an Individualized Educational Program (IEP) for homeschooling.

Thursday, July 24, 2008

I was THAT mother!

A mother of one infant was at an attachment parenting (AP) playdate, and she saw a woman who was at the end of her rope. She decided to post about it on a private local board to vent her frustration to people who would understand. The mother to one infant posted that the overwhelmed mom was extremely negative toward her oldest child, maybe even to the point of making fun of her. She was preoccupied by blowing up a pool for some children, and then seemed to wander off and leave her young, crawling infant to be cared for by whoever was nearby, while she socialized and continued to harass her oldest child. She was at the AP playdate, but didn't seem to really "get" what AP was, and this mother of one infant decided that this out of control mom shouldn't think that what she is doing is AP, and that the mother of one infant was going to make sure that she was not at any other playdates with this mom who clearly doesnt "get" AP.

Well. Imagine my surprise to log on to that private local board and find a post about ME! I was the overwhelmed mom in question.

AP or mainstream, judgment sucks. But being online on different forums, I sure have seen a ton of "OMG I saw this lady at WalMart today...", and that day, I was the lady.

And granted, if I had one small child and saw a mom flipping out like I was flipping out, I suppose I might have sworn that would never, ever happen to me. Ive gotten loads of judgment from moms of one small child who havent lived through age 2, age 3, or any age past that. Just not ever quite like this. One should never swear that they are never, ever going to do something. It generally has the potential to come and bite you in the butt later.

My oldest daughter and I talked about that day. I apologized that day, and I apologized again. I was forgiven both times. She was horrified that a mom would talk about me like that, and said she was sad that this woman doesnt understand that people have bad days sometimes.

A wise mom friend of mine said something sweet, and true too, about this:
"I would much rather be the daughter of a woman who is open to learning and changing if something isn't working, than the daughter of someone who already has it all figured out."

The mother who posted did apologize to me, and felt badly that she had judged without knowing the full story and had not offered to help. She acknowledged that she had not been in my shoes before., and that she wanted to get to know me better.

I learned that I need to try harder to hold it together when Im in public.


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