Big thanks to Kay Marner and Adrienne Bashista for organizing this blog and for editing and publishing the Easy to Love, Hard to Raise anthology. I’m honored to be a part of it.
I am Lorraine Wilde and I have been blogging about my writing journey at One Writer’s World from the Pacific Northwest since 2009. I often use my writing as a way to process my feelings about my children’s disorders.
I’ve known since my twins were 18-months old that they weren’t typical. The signs were there earlier, but denial has been a long-term friend of mine.
A fellow mom in Baby-and-Me class helped me realize my children struggle with Sensory Processing Disorder (also known as Sensory Integration Disorder). Sensory Processing Disorder is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception).
Assessments during preschool led me to consider Asperger Syndrome, but it turns out getting a firm diagnosis was cumbersome and elusive. I’m a scientist, so I tend to approach everything that way. I read every book my public library had on Asperger’s. One book helped me discover that my boys suffer from a metabolic disorder called pyroluria. Pyroluria is a blood disorder where an unnecessary byproduct, kryptopyrrole, is formed during the manufacture of hemoglobin, a constituent of red blood cells. Kryptopyrroles floating around can result in a whole host of symptoms, many of which are shared with Asperger’s and other disorders.
I felt immediate guilt when I realized that my children had inherited this disorder from me. I was dismayed that I’d been living my whole life undiagnosed. I also have Sensory Processing issues and pyroluria, but I never knew what to call it. I knew I wasn’t typical and I’d made a very long list of my “character flaws” that needed work, but I never considered there was an actual explanation for it.
Because my twins are now only seven, they don’t yet understand their disorders, and every day I am thankful for that. The time will come soon enough, and I don’t look forward to the day I must explain it to them. I’m hoping that next week’s episode of the TV show Parenthood, where parents Adam and Kristina will be explaining to their 11-year-old that he has Asperger’s, will give me ideas on how I will broach the subject someday.
One of the hardest parts for me has been letting go of my hopes for a typical, boring life; accepting that my children probably won’t be the most popular kids in school; accepting that they might have to struggle for their whole lives with these disorders.
But discovering that I’ve been living with these disorders has also helped me realize that my kids will be okay, because I’m okay. I’ve had a productive career and while relationships are a continual struggle for me, I have many friends, all without the behavioral interventions, therapies, and accommodations from which my children are now benefiting. My road was bumpy, but I survived it with joy and hopefulness, and so will they.
I’ll be blogging again next week about my hesitation to start the latest therapy, the Wilbarger Brushing Technique, that will hopefully lessen my son’s tactile sensitivity, specifically an aversion to rain on his skin, which can be tough to live with in the not-so-sunny Pacific Northwest.
Lorraine Wilde is a freelance journalist and environmental scientist. She posts regularly on her blog and has published articles at the parenting website www.Neighborhood-Kids.com. Lorraine is writing her memoir, Egg Mama: An Egg Donor and Her Extraordinary Family.
I have not had any time to read any posts till now and I am so glad I started with yours. As a curriculum specialist, I help teachers to work effectively with kids with Asperger’s (a favorite of mine) and sensory disorders. We are just becoming so much more aware of these things and they are becoming more common, at least in my line of work they are.
I hear you with your feelings of anxiety and guilt. My youngest grew up struggling with AD/HD and a bad case of scoliosis. He and I had identical surgeries just a few years apart, to implant steel rods in our backs. He also inherited knobby tricky knees from me that dislocate when you least expect it.
But I believe that these things have made him a pretty terrific adult. Sensitive and caring, especially about people who are different for reasons they cannot help. And they have made me a champion for kids at school who need more support than they have. My job is to help the parents, kids and teachers work together. Wow! What a great thing.
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I’m excited to learn more about you and pyroluria, which I’ve never even heard of.
Hi Lorraine! I am excited to hear more of the sensory integration disorder. My son was diagnosed with this when he was 12, along with the other disorders. Unfortunately, he was too old to go for OT or have OT come to us…so we are told many times a day to stop breathing because we are too loud! Often times triggering a huge rage, this is the one disorder we cannot figure out how to help him. So looking forward to your knowledge!
Jeanne, Kelly, and Renee!
I’m so glad you found this blog. Thank you so much for the kind words and sharing your own stories. It does seem that when we’re dealing with poorly understood disorders, we must gleen as much information from fellow struggling families as we can.
Tomorrow I’ll post another blog right here at http://www.easytolovebut.com. I hope you can find something that speaks to you.
Lorraine,
I feel for you! I found out I’ve had pyroluria all my life and didn’t know it. It runs in my family, and I can tell you, if you don’t know what to do for yourself, it is NO FUN.
But Dr. Larsen’s book “Emotional Healing in 7 Weeks” turned my life around. I found out to change my chemistry…vitamins are a lot better than being on toxic drugs the rest of your life, right??
Pyroluria is when your ability to process stimuli can deteriorate to the point where you have a hard time just functioning in society. When all the stresses from the divorce hit me, I soon lost my ability to “deal with it” and after a while, I just shut down.
This person is very sensitive and can have problems with EMFs, adjusting to weather changes, noisy environments, “noise” or vibrations from just about anything, even “vibes” from people.
What happens is all those excess kryptopyrroles run around and grab aldehydes–like B6—then those two attach themselves to zinc, and hit the exit. What happens when B6 and zinc get flushed out of the body? Disaster! But that’s not the end of it… If not checked, after a while you have serious adrenal exhaustion on top of everything else.
When I found that book in the library and changed my eating and started the vitamin protocol, it was like waking up from the dead. My friends will tell you now I am unrecognizable from 9 years ago when I got my divorce.
Dr. Joan Matthews Larson has done extensive research on pyroluria and many other depressive states, including those from candida contamination and heavy metal toxicity. I hope this helps you!
Meggie Cole
Meggie! Thanks for your post. I had not yet heard of Dr. Larson’s book so I thank you for the referral. I do appreciate expanding my understanding of this disorder. I too have friends who would say that I’m very different now on vitamin therapy than I was without it. I too have suffered from each of the symptoms you mention above, and also ended up with adrenal problems. Thank goodness for the help of my naturopath, Dr. Jean McFadden-Layton who has helped me manage my symptoms. I congratulate you on persisting with diagnosis and treatment. Thanks for commenting. I hope you’ll pitch in an any of my future posts that speak to you.