Sensory Memories Understood

Chaotic Idealism wrote a post today about 'stress based regression'. I think it is a very important read. We have always considered Maizie as being a child who regresses. Now, after reading her post I see it in a new light. Of course with Maizie's ongoing seizures we do see regression in other forms too that are very concerning for us. But for this post I will focus on the regression that stems from over stimulation, from an environment that is clashing with her needs.

It hits home with something we realized a few weeks ago when we were watching old behavioral video tapes of Maizie. I was appalled to see a few obvious areas of "over stimulation" or sensitivities that Maizie had that we were unable to recognize. I know I should not be too hard on myself but looking back I really wish we would have figured out what was upsetting her and been able to make a few simple changes. I am sure at the time we were making major changes all the time but still....it was really hard for me to watch.
I am amazed and humbled that Maizie was able to tell me exactly what she needed as she watched the video. I was not wanting her to watch the videos. I worried they would upset her or she would view her past differently. She begged me and I gave in. She has been fine since viewing them and taught me many lessons. Of course, keep in mind it would have only been within the last couple of years that she could have watched these videos and communicated with me on what was bothering her. Before that time she would not have had the verbal skills or possibly even the comprehension skills needed.

The first thing we noticed was during her bath time. Maizie was three to four years old in these videos. She would scream from the start of bath time until we finished cleaning her. I asked Maizie if she remembered what was upsetting her so much during the bathing time. Maizie laughed and said, "The water is loud and it feels bad on her body." Whenever Maizie sees herself on video she says things like, "She is sad." or "She is pretty." I know she understands it is her when she was little but she still does not speak of the video as if she is watching herself.

Anyway, when she clearly told me what was wrong with the bath time I about fell to the floor. Duh! What on earth was I thinking back then? Neither Joe nor any professional watching the tape figured it out. We knew the water sensation bugged her but we were oblivious to the noise factor.This also made me realize that she had the hardest time in the bath tub that was large and did her best in a small tub. Her best bath time experiences were when she would beg to bathe but only to play in the water so at those times I never ran the faucet to wash her hair or had to use wash cloths. Now, we use those disposable baby washcloths that are very soft. I know it is not very 'green' but they don't hurt her like regular wash cloths seem too.
Once Maizie pointed out this almost too obvious fact I noticed in the videos that she calmed down almost immediately once we turned off the water. We always kept the water running while washing her hair, therefore causing her to scream and hit at us during the entire procedure. While we watched the video I was horrified at how obvious this was! It was painful for me to watch. I was saying to myself in the video, "Turn off the water and she will relax!" We spent years bathing her in this fashion. All we would have had to do was run the bath water and get everything ready before even bringing her into the bathroom. If we did not want to rinse her hair from the tub water we could have easily filled it from the more quiet sink faucet.

I even noticed that before the bath when she was very upset she would hyper focus and scream about who was going to take her into the bathroom and who would bathe her. She would get very panicky and say, "Mama carry me! Mama do it." Then, during the video I noticed that Joe was the one who was washing her hair and doing all the bathing. Through the entire bath she kept repeating that Mama should have carried her. I really believe this was her way of trying to explain that we were not doing it in a way that was helping her. Had I listened to her I may have carried her in while Joe was getting the tub filled. If she associated Joe with the loud faucet noise it would make sense as to why she was screaming for me to hold her.

I know that looking back can't change what happened then. As Maizie was watching this video and explained why she was so upset I said, "Maizie....I am so very sorry we could not understand what you wanted, what you needed." Maizie smiled and said, "Mama...it's okay. I still love you."

Wow. As Maizie would say when her emotions are getting too strong, "I am melting!"
I also noticed major trouble with transitions during the video. I asked Maizie why she was screaming in the car and refusing to get in the car seat during one of the videos I showed her. She said to me, "The seat hurts." Plain as day! Well, no wonder these major...and I mean huge melt downs stopped once she was able to stop using a car seat. We were pretty much forced to use the car seat however. But, I wonder what we could have done to make it more pleasant for her.

I also asked her in one video why she was so upset with Joe leaving to go to work and me trying to get her in the car. This is what she said, "It is fast. It hurts when it is too fast."

Are you kidding me? I was amazed. I still am amazed. It has taken me a few weeks to process it all. I felt like total crap at having not figured some of these most simple things out. Now, would it have made a big difference if I turned off the faucet and changed the bath time routine? I guess I can't know for sure. Considering how fast Maizie explained the discomfort she felt in the videos......well, I am guessing I would have noticed some improvement.

Now that Maizie is able to verbalize her needs for the most part she is a much calmer and happier child. I do believe that many of her "behavioral" outbursts were her trying to tell us that the way something was happening was not good for her. I do think we were doing our best at the time. However, I will forever think that we should have thought through her routines in a more painstakingly detailed way. Broke down every task into little steps in order to discover what was the breaking point...where could we change something in order to help her feel more comftorable.

Maizie can't always explain why something is not right in her environment. It is sometimes hours or days before we get to the root cause of a serious melt down or fear of something that has taken place. Sometimes there are no answers and we are left wondering what went wrong.

Chaotic Idealism's post reminded me of these times with Maizie. I know looking back that Maizie's "bucket" was full early in the day and we forced her to do more, go more places and see more people. There would be days where Maizie would refuse to leave the house. I would get so upset with her because I wanted her to go to school or to a play date and there she was...huddled in a corner, screaming and holding on for dear life. Friends would think, "How can it be you can't make your four year old get in the car and go to school?" Well, it is true. I could not make her go. Her bucket was overflowing and she had no where to put any new stimulus coming at her. It took me years to respect that about Maizie. I had to change my lifestyle and my expectations of Maizie. Once I did that everything slowly turned for the better.

We still have many many struggles but I look through new eyes when we have them. I ask myself new questions and change our routine, our life style, sometimes even our friends to accommodate. It is never easy but the rewards are wonderful. I wish I would have learned to stop fighting against what Maizie needed way earlier. I wish I would have stopped trying to make her conform to what teachers, friends, doctors or other parents thought she should be like. Or better yet what I should be like in caring for her.

I should have listened to my gut when I thought Maizie had sensory processing disorder but doctors belittled my concerns and led me to seek answers in other directions. Finally, I stopped worrying about getting a diagnosis for sensory issues and read books on the subject and bought products I thought would help. I put myself in her place and tried to see things through her eyes, ears and through her skin. No professional can truly do that, only Joe and I know her that well.

I slowly began to accept that Maizie was a child who needed time alone, quiet, low lighting or none at all, air conditioning, cotton clothing with no tags, small bath tubs, shampooing without tilting the head back, no showers because she feels wobbly, special toothpaste that will not "burn", special foods that do not "stink" or are not of "bad color", fidgety toys, baggy shirts, tight pants, socks that 'feel right', something special from someones house before we leave, transitional objects for the car, deep pressure through hugs, heavy blankets or her squeeze machine, our perfume and scents are best when "Maizie approved", vacuum only when she is happy in her room with the door closed, no new movies or music unless she approves the "newness" of it, cutting her hair when she is ready and willing...not when I want it done, often silence is more rewarding in the long run than listening to "my music" while in the car,smells really can cause melt downs, she truly will learn when her 'brain wants to" (just like she tells me), just because she likes watching something does not mean she wants to participate and that has to be okay, if she says she can't do something it is not necessarily that she is being stubborn...more than likely it is the truth and I need to respect that, just because she can do something one day does not mean she will be able to or want to do it the next, she requires time to determine physical pain and sickness (she needs help knowing when she is sick), changes from one place to the next need to be slow and marked.....and the list goes on and on. What is the most important thing we have discovered and changed? Our expectations. Our attitudes. Our "way" of being. Our energy. Our lifestyle. So much of what we need to change and adjust is not within our daughter, but within ourselves.

Once again, I encourage you to read Reports from a resident Alien at Chaotic Idealism. I continue to learn a great deal from her blog.