The ASA's 38th National Conference on Autism Spectrum Disorders (July 11-14, 2007) of ASA

The Westin Kierland Resort & Spa, Scottsdale, AZ

http://www.autism-society.org/

For a complete author index with session numbers, please click here
Friday, July 13, 2007: 10:30 AM-11:45 AM
Herberger Ballroom 4 & A
#2865- Santuary: Tools for Creating a Comfortable Home Environment*
Home should be a sanctuary where every family member’s needs will be understood and met. What does the perfect home for the ASD family look like? Every home is as unique as the family that lives there. This presentation offers strategies for making use of visual aides, managing medication, enjoying meals and for getting a peaceful night’s sleep so your home can be a perfect fit for every member of YOUR family. All with a dash of self-deprecating humor!

Presenter:Kristi Sakai, Parent, Author, Editor - Kristi Sakai is the mother of three children on the spectrum and author of ASA Literary Work of the Year 2006 in the Family/Social Category, Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Syndrome Family. She is the editor of AAPC Community of Support, and a national presenter. But her greatest passion is being "Mom" to Tom, Kito and Kaede, and wife to Nobuo, all of whom have Asperger Syndrome. Kristi is currently co-writing (with Peter Gerhardt) The Hidden Curriculum of Sex.
 
Home is a sanctuary from the outside world for most of us, but even more so for kids like ours who struggle with social and sensory issues. Coming home to a place where they feel understood, accepted and know their needs will met gives them the strength to brave the world once again the next day. For parents who experience challenges raising a child on the spectrum home may not always feel peaceful, and they may struggle trying to meet their own needs. With some organizational solutions, some jazzy parenting strategies we can create the kind of atmosphere where everyone feels they belong (parents too!)

Visual aides: not just for school!

One of the wonderful characteristics of individuals with ASD is that they are visual learners. Clever teachers utilize this strength in the educational environment with picture schedules, and for organizational purposes such as clearly marking the location for the students to put things. Who says they have to be the only clever ones? Visuals aides are an excellent non-verbal way to ease transitions of all sorts. An early morning battle as you stand over your child to tell him step by step to: get dressed, brush their teeth, get their shoes on, or simply giving up and doing it yourself, can be eased with a morning picture schedule. Instead of telling the child, we direct them to the picture schedule where it shows each step. It is not mom telling her child what to do, it's the schedule. It also allows for a measure of control our kids struggle to maintain.

Clear labeling can reduce the confusion factor not only for our kids, but for our spouses (who may need a little visual prompting of their own). The backpack that is tossed on the floor has a clearly marked location. All the better to have the child draw their own picture of a backpack. Does it have to LOOK like a backpack? Nope! It IS a backpack if that's what the child says it is, and he is more likely to enjoy using something he proudly helped create. Labels on dresser drawers: sock and underwear, short sleeved shirts, long sleeved shirts, pants leaves the mystery out of the equation. The child is less likely to leave it on his floor to be trampled on, AND he will know where to find things when it's time to follow his picture schedule and get dressed. Along with this portion of the presentation I'll be providing some strategies for purchasing clothing and shoes, and how to save money, time and angst.

Calling a Truce: Tools for Having an Enjoyable Family Dinner

“I am NOT eating THAT.” yells the child, stomps off and slams the door to his room. Mom just spent an hour cooking that meal, and her secret ingredient was love. Not only does she feel frustrated, she feels hurt. It might not feel like simply a rejection of her meal, but of her efforts and her love. Well meaning, good-hearted Dad might give a stern lecture or threaten no dessert to no avail. Mealtime has become a battleground. Numerous studies have shown that kids who eat dinner with their family three or more times a week are more successful in school, better socially adjusted and less likely to take drugs or alcohol. The key is family togetherness. How communal are we feeling as the child gags on Mom's specially made casserole? How communicative is that child? How peaceful and relaxed is the family who argues about food while consuming it? The answers are pretty obvious, but what do we do about it? Do we just let them go hungry? Do we let them scarf down junkfood instead? Nope!

Cover the basics: Try to find at least one item in each food group that the child will eat. It might be the same items: potatoes, peas and chicken three times a day, but hey, the kid won't starve and he's getting adequate nutrition.

Work on one goal at a time: If food is it, then focus on it alone. Our kids struggle with new experiences and balk at increased expectations, so if his diet is the current priority, let off the pressure in some other area until things stabilize.

Offer Rewards: Allow the child the choice whether to eat something and receive compensation for it. Video game time? Half an hour of TV? Dessert? Entice them and let it be their own choice. They are less likely to gag if it's under free will.

Keep it to yourself and see what happens. Exposure! Hey, you don't have to eat this, but I'm going to keep it on the table because “I” like to eat it. The kid gets used to the look and smell of something. He may eventually get curious. Or not.

Let it solve itself. Kids something go through phases. Many a four year old refused to eat anything but oatmeal, but I've never met a forty year old yet who exclusively exists on such faire. Keep offering without pressure and one of these days he might just decided that peas will not actually cause his death.

Do a little detective work: is it potatoes he hates? Or is it the way you've prepared them? Won't eat scalloped, how about mashed? Is it mashed potatoes he objects to? Or the lumps? Use a handmixer and be liberal with a little milk and suddenly he might not mind mashed potatoes.

Not getting any? Sleep that is!

No one is their best without a good night's sleep, and for many of our kids on the spectrum that is as elusive as a “cure” for autism itself---although for most of us, we'd rather have the sleep thank you very much! Many kids with ASD have sleep problems from infancy on, consequently so do their parents. So what's the deal? Why are they keeping us up into the wee hours?

Difficulty with transitions. As we know, kids on the spectrum often have difficulty with transitions, and going to sleep is a major one. Awake to asleep and asleep to awake cycles are hard to manage. Using a picture schedule can prepare the child for the transition.

Overstimulation. Ever so exhausted that you're keyed up and can't sleep? The demands of school are often so stressful for our kids they can't settle down.

Anxiety. Many individuals with autism struggle with anxiety. Close their eyes and the anxious and worries of the day spring up with a vengeance.

Underlying neurological issues. They often say in medicine: if you hear hoofbeats in the night, look for horses, not zebras. In other words, look for the obvious source of trouble first before we look at the less obvious. If strategies continue to fail, it might very well be time to investigate for an underlying medical condition such as a seizure disorder.

Here are a few strategies for getting some shut eye:

-Keep to a routine.

-Keep stimulating activities to a minimum at bedtime (including video games)

-Take a look at what your child is wearing. Some kids cannot tolerate clothing, but don't care. Unless you live at the North Pole and he is in actual danger of becoming a popscicle, let him be. On the other hand, if an intolerance to sleeping in clothes causes him to awaken because he's chilled, turn up the heat.

-Provide calming music. Some kids even fall asleep with headphones (I do!)

-Water. For some a soothing bedtime bath with lovely aromatherapy is just the ticket. Unless you have a child who is intolerant to water then scratch that.

-Warm drinks. A little warm chamomile tea with honey naturally eases one to sleep

-Weighted blanket. Deep pressure! Some families simply stuff a couple of heavy blankets into a duvet and make their own (no sewing!)

-A backrub while discussing positive things of the day can be a nice way to end the day and a way to discharge worries.

-Read a somewhat boring story. Nothing puts a child to sleep like the sound of his parent's voice (sigh!)

Medication

You've implemented every parenting strategy known to mankind, you've created a loving, supportive environment, and you're basically Mom of the year, but your child is still having meltdowns, cannot sleep or is miserable with anxiety. Perhaps you've even gone the route of trying every homeopathic and natural remedy your visa or mastercard can handle, and still nothing works. Perhaps it's time to talk with your doctor and consider medication. I do not recommend that pediatricians or GP's administer psychiatric medication. I'm a strong believer in going to someone with the most up-to-date information on medication, a board certified pediatric psychiatrist.

Managing medication

Parent struggle whether to go the route of medication, finally after a great deal of research they have decided this is the best thing for their child, and then discover managing meds is a major hassle. Not to mention the darn kid doesn't want to take his meds for heaven's sake! What on earth is a parent to do? Strategies below:

Educate your child. He or she may be resistant to taking medication because he sees absolutely no reason for it. Many kids respond positively when empowered by information. Oh, this medication prevents those awful headaches that keep me from playing sometimes? This one keeps me from feeling angry and out of control all the time? Kids will also notice they feel better when meds are working well.

Consistencey Routine! Our kids with ASD thrive on it. Picture schedule, post it on the fridge, it's not a question of whether or not you take your pill. Here it is, right on the schedule. Also, like many parents we've found that when a med prescribed for behavior issues is accidentally missed, the kid is less likely to be cooperative when taking the next dose—because he's not at his best and a little cranky.

Send an extra. If your child receives medication at school, send a week's worth at a time every Monday…plus one extra. Just in case NEXT Monday not all of your brain cells are online and you forget, they have it on hand.

Keep it on you. Always have a dose or two of your child's medication WITH YOU, even if you think you'll be home in plenty of time for the next dose. Car trouble, flat tires, traffic and delays are part of life. Our kids are already chronically unflexible, so having to deal with an emergency and in the meanwhile not having received his meds, might be just the last straw for our kids. No one wants that.

Avoid mistakes, use a dosage management system. Did Dad give him his meds at 3:00? Keeping weekly medications stored in a box marked by periods of the day ensures that all requires is to check. A checklist is another option. Always post the current list of medications on the fridge. In the case of an emergency and another caregiver must come in to take over, it's all there to refer to.

Refills. No one wants to be out of meds. on the weekend, a routine helps you plan ahead. Choose one specific day of the week to refill medication. Most pharmacies have a call in option for refills, even when out.

If your child refuses to take his medication

Tell your doctor. There may be a liquid substitute

Find out if pills can be split or ground and added to foods. Some medications can, others cannot, particularly time-release pills that can be dangerous if broken

Compound pharmacy. These special pharmacies can take nearly any medication and make it into a liquid in addition to masking the flavor.

Change your approach. It's not “Do you want to take your meds?” It's “Do you want to take your meds with juice or water?”

Put it on the picture schedule. It's the schedule telling him to take his meds, not Mom. Who can argue with the schedule?

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