Sensory Processing Disorder Awareness, Our Story

This is Sensory Processing Disorder Awareness month. I knew Maizie had severe sensory issues since she was a newborn baby. It was hard to watch her struggle during baths, having difficulty eating certain foods and refusing to be almost anywhere but home. Most of us take our ability to process sensory information for granted. When this complex system is strained a child or adult will struggle with all areas of life.

I asked pediatrician after pediatrician if Maizie's reactions to sensory input were "normal". I worked hard to explain how difficult caring for her on a daily basis was. My concerns were returned with a vacant stare, a nod or a pat on the shoulder. After a while it was pretty easy to blame Maizie's sensory difficulties on my supposedly poor parenting skills.By the time Maizie was a preschooler her sensory issues were obvious to more than me. To this day Maizie hates to get her haircut. I came across these pictures the other day and had to smile. It was a challenging yet happy hair cutting experience. Rachel was not only Maizie's hairdresser back then but she also babysat Maizie on a regular basis.

Finding hairdressers willing to put up with Maizie's inability to sit still and be touched for a haircut has been difficult. Not only was the sitting torture for her but the smells of the salon sent Maizie over the edge after about fifteen minutes. I did not know it at the time but the smells were triggering Maizie's cyclical vomiting syndrome. Many hair appointments turned into long bouts of vomiting. I left hair appointments carrying a messy, vomit and hair filled shirt while wrestling to keep Maizie in my arms while she screamed and cried.

Finally, it all became too much and I began cutting Maizie's hair myself. Sometimes she was willing to stand in the bath tub while I quickly cut her bangs. A few times I snipped at her bangs while she slept, praying she would not wake up. Many times she woke up and proceeded to be up for the rest of the night, wired and ready to go.Once I had a handful of information concerning Sensory Processing Disorder I went into the pediatrician's office as if I had discovered a miracle. Excitedly, I would hand over the information to her doctor. I remember holding my breath, praying that the doctor would say, "Eureka! You've got it! Just do this and this and all will be well!"It did not take long for me to realize Maizie's pediatricians knew nothing about Sensory Processing Disorder. Not one of her doctors believed that a child who made eye contact and who spoke could be Autistic. SPD was not even on their radar.

Once again, we felt totally alone in helping Maizie. I went through a month or so of grief. Beating myself up for my inept parenting abilities. Once I stopped feeling sorry for myself I decided knowledge really was power and I worked on my own to discover what might help Maizie handle the overwhelming world around her.

After coming to the realization that Maizie responded well to and needed deep pressure we were able to find ways to help her. No child is exactly the same in what helps him or her destress from the sensory overload being experienced. I told myself it was like being a detective. We tried something and if it did not work, we moved on to the next idea. When Maizie was seven we found an occupational therapist who helped with SPD. It was difficult to get insurance coverage for OT but we did see a benefit.

We found Southpaw Enterprises and ordered a weighted blanket, chewy tubes, the steam roller and a weighted kitty pillow. I read every book I could find on the subject. My two favorites are...

The Sensory-Sensitive Child by Karen A. Smith, Ph.D. and Karen R. Gouze, Ph.D.

Too Loud Too Bright Too Fast Too Tight (What to do if you are sensory defensive in an overstimulating world.) by Sharon Heller, Ph.D.

It took years for us to realize that the speed of our life, the intensity to which we went through a day directly affected Maizie in every way. As parents it was up to us to simplify our lifestyle in order to help Maizie cope with SPD. Adjusting our expectations and slowing life down is by far the best thing we do to help Maizie cope with a world that is too much for her senses.

Finding things to help Maizie with her sensory challenges is an ongoing process. Some days taking a bath, brushing her hair, going to a store and eating seem effortless. On other days we have to think outside of the box in helping her through these tasks.

There are many times where I feel rushed and get so frustrated at how Maizie's inability to cope with certain situations slows us way down. I am short tempered and my empathy evaporates. When this happens I find it helps to skim my books on sensory processing disorder. At other times I am shocked to realize that my expectations have by far surpassed Maizie's abilities and I am taking it out on her. Not good. I might need a break or a long walk to sort out what went wrong. Answers never come easy in this area. We are constant detectives in the mystery that is Maizie. What works for one child may cause more difficulties for another.

Parents who have children with sensory processing disorder learn patience and discover the importance of empathy. In our situation SPD is a diagnosis the professionals have pretty much ignored. Sometimes SPD is considered a part of Autism and not a separate diagnosis.

For us SPD has changed how we look at life and what is going on around us. It is an added challenge and yet I am thankful for how we have learned to tone down our lives. Taking time to breathe and simplify how we live is a benefit that definitely came about through discovering how Maizie's senses process the world.

The Kirton Family, My Thoughts on Autism x 6

Okay. So did anyone watch Autism x6? A show on Discovery Health about Amazing Families. We did. I have seen the Kirton family they pictured on other interviews before. They have their own blog Autism Bites (not liking the title any) and foundation. Hopefully some of the home renovations from this foundation would go towards their own home. I know these parents love their children very much and yet I found much of what was going on very disturbing.It may seem odd to care so much but when people watch these shows they will think that this is what life is like with all Autistic children. Even worse, they will think that some of the tactics used within this household are acceptable. This show was a giant step backwards in the advocating for special needs children.

Here is a bullet point list of what I found disturbing.
*In the interviews I saw and the show the children never have bedding on their beds. The reason being that they have accidents or tear the bedding off. Why not as sit the children in learning to keep the bedding on? Buy clips or sheets that wrap totally around the mattress to protect it and keep the bedding in tact. It looked terrible and can not be comfortable.

*The children are allowed to tear at the walls, removing it little by little. One little girl in particular was said to do this as she layed in bed. The wall was torn down to the brown board. Is it too hard to redirect an autistic child so that they have something else to rip and tear? Something appropriate could be used. If a child is being allowed to destroy a wall that child is not being watched carefully. The child may require sleeping in the parents bedroom until the behavior can be stopped.

*A little boy was shown belted onto a kitchen chair as the dad cut his hair. The dad explained that he would be squirming all over the chair if they did not belt him in. There are more appropriate ways to do this. A booster seat with a built in belt would look a lot better and would certainly be more comfortable/safer than the dad's belt. This one really concerned me. We all advocate and work very hard for our children never to be held down or tied down and then they show this as being a great technique. It made me sick.

*The father at one point made a comment about working hard to make her daughter "more human". Ummm.....need I say more as to why this is inappropriate language when discussing Autism?

*The parents have a large piece of wood that closes off the kitchen to the children. Once again, is this a farm? Why not use one of the many baby gates that can be purchased inexpensively to restrict this area? When I saw the wooden divider that was as tall as the parents I was shocked. Not only is it unsafe because a child and adult can not even see through it but it looks like they are caring for farm animals not children. If one thinks I am focusing on what something "looks like" well, yes I am! It is very important not to treat people like they are animals no matter what their physical or mental challenges are.

These are just a few of the concerns I had in regards to this program. The family is looked up to as an example of how to care for Autistic children. I am sure the family was chosen due to the large family size and that all of their children are Autistic. The deplorable conditions in the house also adds to the sensationalism of the show.

The family is being studied. I do hope that includes complete genetic studies on the parents and children. This family could be a huge help in that area. It would seem to make sense that there is a huge genetic possibility going in within this family. Unfortunately, I doubt that is part of the study.

My final thought in regards to this show will upset some people. I don't mean for it to do so. Obviously, this family is overwhelmed. They have their hands full. All six of their children are Autistic and of varying degrees. Why do people have more children than they can afford to take care of? Why do they have more children than they have the energy for? Raising a child with Autism is very expensive. Raising six children with Autism would be beyond expensive. It is no wonder the family struggles to afford proper tools in the home to assist with the care and direction of these children. They mention in the link above that they have no space in their 1, 100 square foot (3 bedrooms, 1 bath and no basement) home for these six children. Why would one not consider the fact of not having enough space for six children before having six children?

It is beyond my understanding when so many children in this world go without homes and care that people give birth to so many children and are unable to care for them properly. Oh, I so know I will upset people with that comment and I am sorry. But, it just makes sense to me to limit the amount of children we have so that we can care for each one in the best way possible.

The Kirton family has their hands full. I am sure the blessings are huge and the challenges as well. I hope that their family begins to focus more on the blessings within their family and sharing that on their blog.

My Cut and Color Upsets Lil' Miss Maizie

Tonight I had my hair cut and colored. Feeling the need for a change I decided to cut my long hair into a short wispy cut and began the process of coloring it lighter. Changing my hair is nothing new for me. I have had it almost every possible length but I have never drastically changed the color since we adopted Maizie. I knew I was taking a risk in upsetting her but such is life.

Upon picking Maizie up from my sister's house she looked at me and broke into a very loud maniacal laugh. I was a bit shocked when the laughter continued for quite some time. Finally, she calmed down and we were off.

Throughout the evening she would begin the hysterical laughing and tell me to look away. At one point she requested some help and I obliged only to hear her scream, "No! Daddy do it!" She closes her eyes and begins to shake a handful of silverware at me and says sternly,"Because of your head! I need to have Daddy do it because of that (pointing to my head). I need you to get rid of that now!" Needless to say Maizie has not taken well to my new hairstyle.

I asked if she thought I looked the same or different. She said, "You are different. A different person." I assured her I was the same ol' mom regardless of my hair color and style. Quickly, she ran from me and insisted Joe play Webkinz with her.She did let me tuck her in bed. This was the ending to her bedtime prayer,"I pray that Ma's hair wears off. Thank you God. Amen."

Maizie will come around by the end of the week. Until then I walk a fine line of taking her concern as seriously as it feels to her and trying not to laugh at her endless requests that my head be somehow changed back. I wondered if getting my hair cut would inspire Maizie to allow her hair to be cut for the first time in months. I will not be holding my breath.

For me, I like the new haircut and color. The change feels pretty...pretty good.