I have been participating on this network for about a year, and although I’ve contributed many comments, I haven’t felt the need to add my own post–until now. I now want to share what we’ve learned thus far on our journey, what worked and didn’t work for us, and the amazing progress our beautiful six-year-old daughter, Chickie, has made.
Our journey into the world of SPD began on June 1, 2012, just short of her fifth birthday, at an IEP at the end of Chickie’s second year of preschool. She qualified for an IEP due to a speech delay diagnosed at two. At this IEP I heard comments such as, “She has trouble regulating herself”, “She appears to be socially unaware”, and “She frightens the other children with overpowering hugs”. In response, I said, “What exactly does that mean, and what are you recommending?” No one seemed to be willing to offer an answer other than “talk to her pediatrician”, but as the meeting concluded and Chickie’s speech therapist was on her way out the door, she told me I may want to look into a book called The Out-of-Sync Child. As you can imagine, I went home and immediately bought it on my Nook. We were on our way that evening to a long weekend in Vermont, which meant a three and a half hour drive, during which I read and cried, and read aloud to my husband, and cried, and felt a mix of relief and fear. I also was angry. Chickie had been getting Birth to Three services since age 19 months, had seen a child psychologist and a host of other doctors at the local children’s hospital, and had attended a special ed preschool for two years. I had been expressing concerns and asking questions of all of these “professionals” since we adopted her at two and a half, yet I’m just hearing about this at five? I wanted to call all of these people and scream at them, blame them, make them confess their ineptitude, but instead I had to accept it and dive into the world of SPD.
Following the guidance in The Out-of-Sync Child, we decided to get an OT evaluation and received a recommendation from Chickie’s speech therapist. Three weeks later she had the OT evaluation. She was diagnosed with dyspraxia because that is an “approved” diagnosis for insurance purposes. I was stunned to discover that SPD is not an approved diagnosis. Verbally the OT told us she is clearly a sensory seeker and her developmental delays were clear, but if we wanted to pursue it further, we would have to get an appointment with a developmental pediatrician, who would likely diagnose PDD-NOS. We proceeded with weekly OT and the internet became a close companion as I researched all her symptoms: speech delay, speech apraxia, dyspraxia, daytime enuresis, nighttime enuresis, poor bilateral motor coordination, poor sensory regulation, mouthing inedible objects, etc. And I read books, many books: Sensational Kids; The Out-of-Sync Child Has Fun; Effective Parenting for the Hard to Manage Child; Understanding Regulation Disorders of Sensory Processing in Children; Toilet Training for Individuals with Autism and Other Developmental Disorders; It’s No Accident: Breakthrough Solutions to Your Child’s Wetting, Constipation, UTIs, and Other Potty Problems. I joined forums: SPDSupport.org; spdbloggernetwork.com. I investigated alternative therapies: Wilbarger Brushing Protocol, Therapeutic Listening, Interactive Metronome Therapy, Theratogs, Brain Gym, dietary changes.
So here we are, fourteen months post diagnosis, and this is what has worked for Chickie. I have put them in the order from what has helped the most to what has contributed at least a little to her improvement:
1. Feingold Diet (Feingold.org). Within two weeks of eliminating artificial dyes, preservatives, and salicylates the meltdowns, angry outbursts and banging her head on the floor stopped. As a result of keeping the related diet diary, we were able to discover some sensitivities to foods that were causing bladder spasms and have gone from having 5-6 accidents every day to 5-6 a week. She made it through kindergarten year with only 6 accidents all year.
2. Johnson Whistle Hierarchy prescribed by OT. Her speech production and intelligibility exploded after the first whistle in the hierarchy. She saw the speech pathologist at the children’s hospital this month and was discharged as a patient because her speech is now at age level.
3. The Sleep Disorder Research Center, Inc. (sleepingdry.com). Within three nights she stopped wetting her bed and began going directly to the bathroom upon waking in the morning. When the supplies for this treatment came in the mail, my husband commented, “It looks like a sixth grade science experiment.” But a week later, he was saying, “That was the best money we ever spent.”
4. Ten Gems for the Brain ebook (movetolearn.com). Treatment for retained primitive reflexes. Major improvement in functioning closer to an age-appropriate level. We had her evaluated about a month before we began the exercises in this book, and in most areas, she was functioning at a 3.5 to 4 year old level. She hasn’t yet been re-evaluated, but in my opinion, she’s functioning in most areas at about a 5 year old level. She’s also now picking up on social cues more readily.
5. Occupational Therapy. She has reached several developmental milestones that previously seemed out of reach. A prescribed sensory diet including heavy lifting and lots of physical activity helps with calming and self-regulation. She is now riding a bike like a pro because of improved balance and body awareness. Her tactile sense has improved, and she can now identify objects by feel, rather than only by sight. She can now catch a ball and shows decreased mouthing of inedible objects due to prescribed chewelry and chew tubes.
6. Probiotics. Within a week of starting probiotics, her focus and interest in learning new things jumped forward dramatically. Before probiotics getting her to do one school readiness workbook page was met with an argument and pouting. After probiotics she asks to do workbooks and will willingly work on them for 15 to 20 minutes and complete 30 minutes with a little encouragement. She’s psyched to try new things that require focus: science experiments, math games, iPhone apps, cooking, gardening.
7. Effective Parenting for the Hard to Manage Child book. My husband and I were able to get on the same page regarding parenting techniques and discipline strategies to provide the consistency that Chickie needs.
8. Therapeutic Listening. After two ten-week rounds, there was minimal improvement with sensory regulation and space/time awareness. We were hopeful it would help with toileting issues, but saw no improvement in that area.
We tried the brushing protocol, but it was not helpful for Chickie.
So all in all, in a year there’s been a lot of growth, development and improvement. If I had to quantify her improvement, I’d say she’s functioning at about 80 percent of what one would expect of a six year old. That’s pretty exciting!! Her speech has improved so much that the school was no longer able to provide an IEP unless she had another diagnosis. After some testing, she was diagnosed with ADD.
So where do we go from here? We are doing a four-day Brain Gym program next week. We’re continuing OT, although we took the summer off. The Feingold Diet and probiotics will continue indefinitely. We are also investigating a program provided by Brain Balance Achievement Centers, which I learned about a couple of months ago from reading the book Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders. We are cautiously optimistic it may be able to help with her inattentiveness and distractability, as well as lingering daytime enuresis. We’re also considering enrolling her in gymnastics classes to continue to help with coordination, balance and hopefully make some social connections.
The most important thing I’ve learned in the past year is that there is no one magic treatment that’s going to make her “all better.” I naively began this journey last year thinking that I would find that. I have found, however, that the right combination of treatments can do wonders if you are willing to research with an open mind, sacrifice your time, sometimes your sanity and often some money, and honestly accept that, barring a miracle from the Lord Jesus Christ, there is no cure for SPD.