Letter from a parent

I am the parent of a child with Sensory Processing Disorder. We received the diagnosis and started focused occupational therapy just after my daughter turned 7 years old. I invite you to read my story.

As an infant, I noticed she would become anxious and cling to me but the extreme reactions to situations started when she was about two years old. Both my husband and I work so our daughter went to daycare. Symptoms included excessive biting; meltdowns; cleaning off shelves of toys in an uncontrolled rage when the environment became too loud; and hitting the other children when they came too close, especially if she was already over-stimulated. At home, she had extreme reaction to someone touching her or if someone was too close to her; tags on clothing have to be removed; covered her ears in loud environments; inability to go into grocery stores, department stores, and restaurants without eventually having a meltdown; lights, especially fluorescents; transitions from one thing to the next even if the transition was simple; couldn’t adapt to a change in the schedule unless I talked it over with her first; meltdowns (sometimes 8 to 10 a day); and anxiety about everything. She would often do things to purposely get put in the quiet corner at daycare because that is what she needed to get herself settled down. When I would ask her about it, she would respond with “that’s what I wanted to do.” Translated that means “that’s what she needed to do.”

I found myself avoiding social situations because either during the event or just after, she would have a meltdown. The meltdowns included kicking, screaming, and biting and would sometimes last an hour or more. During these times, I would simply hold her very tightly without saying a word to her. She would, eventually, calm down and go to sleep. The sleeping would give her over-stimulated sensory processing system an opportunity to relax.

Every time we would talk with one of her teachers or daycare center care provider, they would say “She’s very bright but….” Then the explanation would start about her behavior. We tried everything from taking things away, not letting her go to events, time outs, etc. Nothing worked and she didn’t care. Matter of fact, she would tell us she didn’t care. When she was 4 years old, we talked with a school psychologist and we were told that she was a 4-year old with a 7-year old brain, but still no diagnosis. We mentioned ADD and ADHD and the psychologist said her behaviors were neither of those. He suggested that we change her environment, which we did. We went from a daycare center to a private home with about 8 children in the care of a very calm provider. This helped tremendously. We did, however, still experience the meltdowns and behavior issues in loud, crowded environments, sometimes multiple times a day.

Then school started. I thought school was the answer but the behavior continued. The teachers and school were very patient. Kindergarten brings many changes for many children so we just worked through it. But, it was the same comment from the teacher, “She’s very bright, but….” Then one day at the end of the Kindergarten year, her Kindermusic teacher called me and asked if I had ever had her tested for giftedness. She had noticed the behaviors and I truly believe her question was a kind way of saying “you should have your daughter tested.” After a long discussion with her, I decided to approach the school and ask for an evaluation. I can’t stress enough the importance of educating your child’s educators about SPD and the affects it has on children. Because our daughter attends a private school, the Principal had to work through the paperwork process to request the public school Special Education team to schedule the evaluation. This was in September of 2008. Our daughter is adopted, so we have very little on her background but we do know alcohol and drugs were present so we completed many evaluations for ADD, ADHD, Fetal Alcohol Syndrome, and Aspergers along with other Autism Spectrum Disorders. The Special Education team spent countless hours in the classroom evaluating Angelina’s behavior and asking her questions in the private setting.

About a week prior to the evaluation completion deadline, the public school Occupational Therapist called me and requested a conference. After talking with the OT, she felt our daughter had Aspergers but she handed me the information on SID (Sensory Integration Disorder) and asked me to take it home and read it. That’s when the light in my head turned on. I had spent many hours on the Internet researching all the obvious childhood issues such as ADD, ADHD, Fetal Alcohol, etc. but nothing fit. When I read the SID information, all the information described my daughter. Everything fit. That night, I went to the Internet and found everything I could on SID/SPD. There it was staring me in the face.

After the evaluation was completed by the Special Education team, the results of were this, “In summary, Angelina, shows significant issues with sensory processing particularly of sound and touch in school and at home. However, Angelina does not qualify to receive special education services because she does not meet any Minnesota Department of Education criteria for disability.” We were basically on our own on this but at least I had been pointed in the right direction.

It was after this that I turned to the Internet for help again and found the SPD Foundation (www.spdfoundation.net). It was through them that I found Amy Danielson of Children’s Therapy Works in Willmar, Minnesota, and Missy Butler, Family Therapist. Amy and her colleague Jen were listed as having completed training that focused on SPD. Everything I read stated that successful SPD management required 100% parent involvement working with an occupational therapist trained specifically in the treatment of SPD. By this time, it was January 2009.

After meeting with Amy, we started therapy specific to my daughter’s sensory needs. Not every child reacts to therapy the same or needs the same therapy so I relied heavily on Amy’s guidance and instruction. We also chose to include chiropractic to make sure the spinal cord and brain stem were properly aligned and family therapy to work through any of the family and personal issues that can develop when working through challenges of a child with special needs.

Following the therapy as instructed by Amy (our OT) and Missy (our family therapist) was critical to the success we are enjoying today. We attended therapy once a week at first then decreased to once every two weeks when things started to improve. Yes, it did get worse before it got better. When the therapy started making changes to the way Angelina felt physically, she would tell me that she didn’t feel like herself. She would do things just to bring herself back to the high level of anxiety she was used to living in every day. Both Amy and Missy helped with determining sound therapeutic solutions if we saw Angelina trying to bring herself to the level she thought she needed to be. Each time I would see her do this, we would talk about how her body felt and what “feeling” she liked the best.

The therapists also helped with Angelina’s feelings of loss and grief for her birth parents, frustrations with friends and classes at school, and helping me understand Angelina’s signs when she needs extra help managing her over-taxed sensory system, among many other things. The first and most important benefit of both is helping Angelina recognize how her body feels when her sensory system is over-stimulated. Secondly, teaching her how to manage the feelings on her own. This is where we are today. She tells me when things are too loud and reaches for her tools to manage her sensory system. She also tells me when she has to leave an environment and she recognizes on her own when an activity is too much. She adapts to transitions more easily. She is better equipped to manage the grocery store, restaurants, or the mall where the music is always playing and lights are flashing. The meltdowns have also disappeared.

For just over a year, we followed the Wilbarger brushing method every two hours. This included at home and at school. Thankfully, the school supported us and provided a resource to do the brushing four times throughout the school day. Angelina completed the therapeutic listening program, which included 30 minutes of listening in the morning and evenings. We cut a hole in the ceiling in our basement and installed a therapeutic swing, which dramatically increased the success of calming Angelina during meltdowns. She sleeps under a 16 pound weighted blanket and uses it whenever she needs to. She also has a 5 pound weighted lap pad, a 7 pound weighted vest, and ear protection for school and other times when environments reach a level that she feels are too loud. We shut off the television. No computer games and very few movies. Television, video games, and movies have repeating flashing lights, loud voices, constantly changing screens, among many other attacks to a child’s sensory system. These things were too much for Angelina and needed to be removed. We also completed ten sessions of therapeutic horseback riding, which resulted in a dramatic increase in her self-confidence and self-control.

Amy taught me many other methods to counteract Angelina’s over-reactive sensory system such as stretching; wrestling properly to provide positive input to her senses; bear and crab walks; blowing bubbles using a curly straw; and chewing gum when I see her chewing her sleeves, fingers, toys, pencils, pens, etc.; just to name a few. I continued holding her tightly or giving really big hugs.

A typical school day would go something like this:

6:00 am – Wake up Angelina and brush using the Wilbarger brushing method for the first time of the day – by this time I was already showered, dressed, and had made lunches for the day

6:15 am – Set timer for 15 minutes. This is the time we agreed for Angelina to clean up and get dressed

6:30 am – Eat breakfast and start 30 minutes of therapeutic listening

7:00 am – Finish therapeutic listening

7:15 am – Leave for school

7:30 am – Arrive at school

8:15 am – Brush for the second time

10:15 am – Brush for the third time

12:15 pm – Brush for the fourth time

2:15 pm – Brush for the fifth time

4:30 pm – Get home from work and school. Brush for the sixth time. Angelina is under the weighted blanket for 15 minutes and blows bubbles. If needed, we would give her additional therapy in the therapeutic swing. Do homework. If she wasn’t in a good spot to do homework, we waited until after supper

6:00 pm – Supper and 30 minutes of therapeutic listening

6:30 pm – brush for the seventh time

8:00 pm – brush for the eighth time and bed time

Today, March 2010, we are doing home therapy as needed and not meeting with Amy or Missy at all. We keep the option open to meet with both therapists if Angelina should show signs of sliding backwards. Angelina is much happier and better-balanced. We continue to manage the sensory issues. I will see Angelina’s typical sensory behaviors re-surface when she is faced with a situation where she doesn’t feel comfortable. Because both her and I are aware and openly communicate, we talk through them and help her manage using calm interaction and clearly defined consequences.

Recently, we were spending the day geocaching, which meant we spent the day in a quiet, natural environment. She was sitting on a swing and she said “Mom, I feel like I’m new.” Of course, I said “What do you mean?” She said, “I feel like I’m new. I feel like I don’t have SPD anymore.” She told me that three times that day. I said a quiet prayer of “Thanks” each time. Since then, she’s reached that “new” place several times. Each time we’ve been in a quiet, rural setting. This could be a walk in the woods or a visit to a quiet park. Fun time for Angelina is not at the mall, the movies, the waterpark, or a sporting event. I recently read an article written by a man who has dealt with sensory issues all his life. He said “If you want to make your child with SPD happy, don’t take them to the movies or a baseball game…take them into nature.” This is so true.

As we move forward, I will never quit teaching the adults around her the reality of SPD and the affects it has on her system. I will help adults understand that when she communicates that she needs to leave a situation, it’s not always because she’s trying to “get out” of something, it’s because she NEEDS to leave. When explaining Angelina’s needs to another adult, I typically use this example. “As an adult, when we find ourselves in an environment where we are not comfortable or it is too loud, we make the decision to leave the environment. As a child, whose life is controlled by adults, the child has no choice but to stay in an environment the child feels is hostile, unless the adult in control understands the true needs of the child.” This is so important. It’s okay to leave someplace early or to shut the television or video game off and listen to your child. They are very smart and know more and have more to say than you think they do.

I thank God every day for our child and the happiness she has brought into our family and also for His never-ending guidance and support as we continue our journey. I knew the moment Angelina was placed in my arms that she was a gift. I also thank Amy Danielson, our occupational therapist, and Missy Butler, our family therapist for helping us bring Angelina to a place of peace within herself. For Dr. Brian Bymers, our chiropractor, who understands the special needs of children and for Angelina’s teachers and educators. We couldn’t have done it without all of them.

Jackie Caron, parent of a child with SPD