It’s been two weeks since Ben started his therapy.
Some of you may be surprised to see me blogging about this again. I was surprised people’s reaction to my previous blog. My family, for the most part, thought it was unbloggable material. Some cited that fact that Ben probably wouldn’t want to have this information out in the public later in life. Others felt it was a family problem that should be kept just to family.
Personally, I respectfully disagree. Well, maybe Ben will be angry about my blogging later in life, but honestly, anyone who knows Ben knows that there is no way this disorder can be kept a secret. And I feel doing so would be a disservice to him. The more people who know, the easier it will be for them to help and interact with him. And maybe, just maybe I can help some other mother who is out there at her wits end wondering what the hell is wrong with her child.
I think part of the resistance I felt from family members is due to the fact that Sensory Processing Disorder is a relatively new discovery. (I had never heard of it before we started this journey with Ben.) I don’t think my family members fully grasped what this meant.
They were surprised to learn it is something that is recognized by the medical community. That therapy is supported under insurance (partially!). That it is a disorder “on the spectrum” just like ADHD or autism.
I’ve been talking to my friend Jennie, an occupation therapist who first tipped me off that perhaps Ben’s problems were sensory.
Let me tell you what Jennie explained to me. Because now I understand it all so much better. We are ALL on the spectrum. Some of us are just outlying more than others.
She asked me how the sessions were going. I said I felt bad because it’s like utopia in there, that Ben is so happy for the attention and as soon as we leave I’m yelling at him to stop running in the street or some other thing. I also said that I never knew how much anxiety Ben suffered from. That I didn’t notice it in every day life. I mean, I figured his opposition to transition stemmed from his anxiety but in therapy it’s very apparent.
Jennie explained that sensory processing disorder basically means that a part of his brain is either underdeveloped or developing wrong. That part of the brain is called the vestibular system and it is responsible for maintaining balance, posture, and the body’s orientation in space.
She explained that the reason I’m observing so much anxiety during OT is that it is the therapist’s job to exercise the vestibular muscle (kind of like how a physical therapist exercises muscles to strengthen them) in order to help fix it. She has to push this system to the limit, causing anxiety, then bring him back to normal again.
She had a lot of helpful suggestions for me, but the most unusual one was to cut out all food dyes from our diet.
She explained there was a definite link between food dyes and behavioral problems.
I thought I was a fairly healthy eater, but I did a check of my kitchen and found ALL THESE PRODUCTS with food dyes (or other banned substances like BHT, a preservative known to cause cancer) in them…
Pickles? And Nutra Grain bars?
I completely freaked out and started crying when I saw that all the gum we buy at the store has food dye. Ben’s behavior is getting worse and worse every month. In the past year, because of his sensory disorder and need to put everything in his mouth (yesterday he didn’t have gum and he was licking the hand railing outside Jack’s school), we’ve let him chew lots and lots of gum every day. Would he change when I eliminate these things?
And after I had a complete freak out about those products, I found even more…
Yeah, even Motrin!
Other countries governments have banned these substances from their food!
I’m imposing a dye free zone in the Calisoff household for the next week. Other people on the internet say it only takes a few days to see the difference, so I’m excited to start right away.
I’ve sourced a dye free gum to help Ben and stuffed anything I thought Adam would be upset about losing in the closet so I wouldn’t accidentally grab it and give it to the kids.
Here is a list I got from Die, food Dye! with possible side effects of food dyes…
1. Hyperactivity: Can’t stop moving, runs most of the time, constant movement of hands and feet.
2. Lack of attention: Cannot focus either at home or school – without affecting all areas of life all the time (not ADD).
3. Sleep problems: Has a hard time settling down for sleep, or has sleep disturbances throughout the night.
4. Mood swings: Unexplained emotional problems, hours-long tantrums, inconsolable crying, paranoia, and meltdowns over tiny things or schedule changes.
5. Violence/Aggression: Biting, spitting, growling, hitting, kicking, and uncharacteristic mean talk.
6. Lack of impulse control: Increase in risky behaviors, excessive talking at inappropriate times, loud talking, disruptive, interrupts people a lot, hard to transition from one activity to another, does not adjust behavior in response to discipline.
7. The Ickies: Headaches, stomach aches, and vomiting.
8. Bed-wetting: This includes daytime wetting, well past the age of toilet training.
9. Skin ailments: Eczema and hives. Her daughter had eczema and cradle cap before they eliminated dyes.
10. Breathing problems: Some kids require an inhaler due to dye-induced asthma.
11. Compulsiveness: Pulls out hair, eyelashes or eyebrows, picks at skin, repeats certain actions numerous times.
12. Not consistent: This is the single most important clue to watch for. Can you give your kid sugary treats without problems some days, but then other times, they freak out? Their clue was their daughter’s hyperactivity after eating sugar-free pudding that they later discovered had red dye.
Ben does not display all of them, but I’d definitely give a nod to 3, 4, 5,6, 9, and 12. Let’s just see how they change in a week’s time. Stay tuned!