First of all, I am NOT an occupational therapist. You should consult one, and probably a speech- language pathologist, before you start a sensory diet. This information is drawn from my experience, and your child's needs may differ from Punkin's. Much of this was learned along the way; doing it a second time would be much easier. Also, Punkin's teacher is a rock star and did a lot of work to get this going. (THANKS!!!)
A sensory diet has little to do with food. Basically, it is a schedule of sensory breaks given throughout the day to regulate a person's state of arousal. This is something that most of us can do naturally -- we drink coffee, tap our fingers on the table, take a walk around the office, ect -- but people with FXS can't. And their needs are generally intensified compared to ours. I think of it as an inability to filter out unimportant stimuli from important stimuli, making the world feel like one giant attack on the five senses.
Some of these breaks may be activating while some are calming, depending on your child's needs. All of Punkin's activities are focused on calming, except when his speech pathologist is working with him.
First, pray. Because, well, the hardest part is getting everyone to cooperate and agree -- not to mention actually follow through. I am of the belief that only an act of God can make this possible.
1. Learn as much as possible about hyperarousal and sensory diets as you can. The National Fragile X Foundation has their Foundation Quarterlies available online, and the articles by Mouse and Tracy are always approachable and realistic. Also, the series Braden on Behavior is quite good. The more you know, the easier it will be to convince your child's teacher that this is worth investing time and energy in.
2. Ask your child's teacher what times of day are the worst. If she doesn't know, ask her to make notes for a week or two and get back to you. Do this at home, too. Make notes of how your child reacts to specific situations -- try to be specific about which behaviors you want to eliminate. (ie: hitting, hiding under the table, stuffing food, screaming) The reason for this is to determine what time sensory breaks need to be given.
A sensory break or sensory diet is meant to be proactive, not reactive. So if your child has trouble at 9:30 every day, you would schedule a sensory break at 8:30 or 9:00 in order to prevent a meltdown later. Also, your child will probably be more cooperative if you aren't catching him in the middle of a meltdown.
3. Request an evaluation by an occupational therapist. She can do a sensory profile on your child to determine his strengths and weaknesses. This is a really important step because it can help everyone understand what environmental and physical challenges trigger undesirable behavior. It will also help when coming up with ideas for what kind of input your child needs.
4. Talk to any other service providers, especially speech-language pathologists, as they often need to work closely with an occupational therapist -- or at the very least are often sharing the same concerns about oral-motor development and may have ideas about oral-motor interventions.
5. Schedule a meeting for all of the people involved just to talk. Hash out all the information you've been given and come to a consensus on what behavior(s) you want changed or eliminated. Also, brainstorm ideas on how to intervene (ie: deep pressure brushing, sensory balls, weighted vests, computer or TV time, swings, snacks, trampolines, chew tubes). In Iowa, if these items are written into the IEP (Individualized Education Plan) then the state MUST provide them and use them. You, as a parent, aren't required to purchase anything. Rememer that the sensory breaks need to be as fast and easy as possible. This increases the likelihood that the teacher and service providers will follow through. Because, let's face it, none of us wants this to be difficult or time-consuming.
6. The diet should be presented later by the OT (or in my case the child's teacher) at a second meeting. If needed, you may amend the child's IEP to include the sensory diet. This makes the sensory diet part of the contract between the state/school and you/your child, meaning you have more rights if it's not carried out. Also, if you happen to move or if a new service provider enters the picture, the diet is explained and detailed in all of the official paperwork that moves with your child.
7. Do your part and follow through at home. Also, consider buying your child's teacher some chocolate.
Punkin's Diet (general version):
He is given a break about every 90 minutes. The majority of this is Deep Pressure Brushing (DO NOT DO THIS WITHOUT TALKING TO AN OT-- it can be done incorrectly!) followed by heavy work. The brushing activates his joints and nerve endings, and then the joint compressions calm them. This is followed by heavy work (lifting, pushing, tug-of-war, chewing on a chewy tube) to further calm and give the joints lots of input.
At other times, she may "squish" him under a pillow or bean bag to give him lots of deep pressure input at once. He LOVES this. His teacher also has him lay on his back on an therapy/excercise ball to give him some upside-down time.
They also have sour candy, popcorn, and chewy tubes to give him intense oral input that wakes up (sour) or works (crunchy/chewy) his mouth and jaw. The idea is to give him enough input through appropriate means that he stops chewing on inappropriate or unsafe things such as toys or his hands. Blowing bubbles and sucking juice or milk through straws at meal times also fulfills this need of deep pressure to the mouth/jaw.
His speech pathologist is using this thing to help with oral-motor defensiveness. She got the mouse and cat attachments, and Punkin really likes to give them kisses.
I continue this at home with brushing and squishing in the afternoon, followed by a snack, and then bouncing upside-down and brushing right before bed.
This plan is WORKING! Combined with his meds, he is a calmer, less-anxious version of himself. I love it. It takes time to see real results, but it works! He is responding very strongly to the brushing, especially. The difference is visible before and after it's done. And it only takes about 5 minutes for the brushing and compressions.
The most important thing to remember is to follow through on this plan every single day, not just as a reaction on bad days or until the rough time smooths over. Just like kids need their medication and their structured routines every day, they need their sensory needs met every single day by a unique diet.
The FX Foundation also has a place on their website where you can e-mail them. I've done this a couple of times, and a real live professional e-mails you back with a detailed, personal response.