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Tuesday, January 24, 2012

Tips for Home Care Providers on Working with a Child with Autism

I sold a much shorter, clearer, and more blog-like blog on this topic to Tender Tree Home Care a little while back. Check to learn more about home care of all kinds. The "blog" you'll see below is completely different, much longer post, so it's probably worth it to check out Tender Tree's blog post first. Without further ado--here are a few tips for working with a child with autism derived from a combination of ABA training, Sunrise training, and experience living with an autistic child for 11 years.

Every child with an ASD (Autistic Spectrum Disorder) is a little bit different, so many kids operate well in the normal world, and others have much more violent behavioral problems. Ability problem areas range from simply avoiding eye contact to never speaking; not every child will smear feces on the walls, and not every child will flap his hands like he's trying to fly. Here are a few tips for home care providers new for helping out in a family with an autistic or ASD spectrum child.

1. Understand where your tolerance and the child's needs should meet

Many children with autism have behavioral quirks that may not be actually dangerous to the child's health or to your ability to do your job as a home care provider. Caretakers often make the mistake of assuming that because a behavior is abnormal for them, it results from autism, and the child should change it. For example, a little boy once enjoyed playing with a pink fairy wand. A caretaker insisted that he could not have this wand and actually developed a behavioral plan to remove it from him. The boy's interest in the wand was neither obsessive nor obstructing his normal therapy or schedule, or even affecting his interaction with other children; she simply did not find a pink wand gender-appropriate. You should think carefully about prioritizing behavior-modification: which is a bigger problem, an autistic boy's habit of screaming when asked to perform any tasks, or his odd interest in picking fluff off blankets? Because many behavior changes become battles for children with ASD, you should pick your fights carefully. A child will often respond better to you as a caretaker if he feels safe and realizes that you aren't out to take away every little comfort from his life.

2. Identify real problem behaviors and their sources

Real problem behaviors have many different sources, and autistic children have very different behavioral responses to life in general than other children do. It's funny how even after Dr. Bernard Rimland disproved Freud's 'unloving mother' theory of autism we tend to look for normal reasons for abnormal behavior; even very well-meaning new caretakers will sometimes assume the child simply received too little discipline, or too much scolding, or some other issue resulted from the child's conniving heart or parental weakness.

Look for three major sources of a problem behavior: physiology, resistance, or social reward. Many autistic children have heightened senses and experience the world differently from you, so it's no use scolding an autistic child to wear his shirt when he won't because the fabric actually hurts him. On the other hand, coddling a child who resists the shirt because he wants to disobey and control you will only end up hurting the child's family life in the long run. The autistic child may be resisting the shirt because a response you give rewards him: you may put him on time-out, and that escape from unwanted interaction may be exactly what he wants.

How do you know what behavior has what cause? You have to chart triggers of the cause, and you have to see in what situations the behavior stops. This will take a long time of getting to know the child, and watching the problem situation over and over again, but part of the diagnosis lies in the solution.

3. Find replacement behaviors for physiological or other comfort behaviors; ignore resistance

To use our shirt example a little more, if you find the child responds better to a different material, the problem may have been physiological. You can ask a doctor as well to evaluate the child. Some autistic children with horrible allergies experience intense internal pain or even hallucinations; the child may bang his head on the wall, or shriek every few minutes, or even show fear of the floor, and the problem might actually come from something a doctor can help with. The child may smear feces on the wall because he's constipated, or because he's reaching an age where his diaper makes him uncomfortable. Try to look for every possible physiological trigger for the behavior, and if you find none, check to see if you're simply rewarding the negative behavior.

Replace desire-based problem behaviors with behaviors that fulfill the same needs. A child may smear feces just to feel the goop against the wall; replace that behavior with finger paints, and the child can experience the same sensation without the yuck. You can teach a child who likes to throw to participate in a game of catch with you. These kinds of solutions may sound silly, but finding ways to channel a child's problem behaviors will save you a lot of frustration.

For resistant behavior, negative reinforcement like taking away a favorite toy or other discipline--you need to talk to your family to understand how they feel about spanking and other controversials--may work. "Normal" kids often respond well to negative reinforcement, but you have to remember that ASD kids live in a completely different world, and negative reinforcement might actually hurt rather than help the situation. If you use negative reinforcement, you must apply it directly after the problem behavior occurs. Not ten minutes later, not before as you see it coming, but directly after. This is the best way to ensure that the child connects the negative reinforcement with the behavior. This may have to happen over and over tens or hundreds of times before the child makes the connection.

You almost have to think like an autistic child in order to make sure you aren't encouraging the problem behavior: the smallest things may become rewards. Some autistic children will actually throw or break things in order to see your anger response. This may sound ridiculous, but because most autistic children have trouble interpreting social patterns in the world around them, they cling to any pattern of normalcy or control. If you had no idea how to communicate with anyone, and everyone behaved completely unpredictably all the time, you might also take comfort in the one truth that throwing the plate makes Nana scream. Much of the time, an autistic child might actually completely tune out your yelling or frustration; at other times, the child may not understand that a particular negative reinforcer has anything to do with the problem behavior. She may just tremble under the loss with no idea as to why it's happening.

The hands-down most-ABA-recommended way to deal with a reaction-seeking problem behavior? Ignoring it. Because autistic kids can be more detail-observant than the rest of us, this means no eye contact, not a word, and if possible no change at all in your body language. Kids who are looking to make you angry will increase the intensity of the behavior for a while to see if they can finally get that response. Don't crack. If you ignore it to the end, the child will realize the response gets them nothing they want, and they will find something else.

I hope your first experience helping an ASD child is a positive one, and that the child feels loved and accepted as you embark on this new phase of your professional home care life!

Thursday, January 12, 2012

Homecare for Family Members with Handicaps: What to Pay, and How to Find Help

When my cousin came over just before Christmas Eve, small talk brought up her new job working for a wealthy family member who became paralyzed in a diving accident. My cousin has to help him get dressed, eat, accompany him to the gym, and do everything else that you may have to do with your friend or family member with physical or neurological disabilities. We got around to talking about payment, and she explained she's taking a cut in pay because he's a relative.

It can be a hard question--what should you pay a caretaker who helps you with differently-abled family? How much more does it cost? Should it cost more? Many children with Down's syndrome have happier demeanors and easier "obedience ethic" than "normal" children do. On the other hand, spending a day with a stimming, high-energy autistic child has turned many a saintly caregiver into a rage-class sinner. Here are some considerations for paying a caregiver for a differently-abled family member.

1. Government aid

Families with mentally-affected family members sometimes receive government social security subsidies for care. Depending on your needs, the state you reside in, and other factors, once they've reached eighteen years of age the government may pay anywhere around $695 a month to supplement their care. This definitely factors in to any decisions the rest of us make about their care in the future. A caregiver in Hawaii can receive as much as $14.64 an hour from the government to help with home care for a young adult with cerebral palsy; you may want to pay a comparable or competitive rate even if you don't receive government money, just to attract good caregivers.

2. Volunteerism

Lower-income families not yet eligible for government aid and unable to pay government rates to their caregivers don't have to fear getting edged out of the home-care market by Uncle Sam; you can still attract good help for less. If you live near a college or university, you may take advantage of psychology or pre-med students looking for volunteer credit. "Miriam" posted an ad in the local student volunteer center asking for help with her child with autism. She trained volunteers to use the Sunshine program to play with and care for her son, held meetings every Sunday, and scheduled each volunteer for a few hours every week. The simple math reveals enough: twenty volunteers at two hours each every week equals forty hours of care, and even ten or fifteen volunteers can fill up a sizable chunk of your in-home needs.

If you don't live near a large student population, an e-mail out to your local church may even get you a long-term caregiver for ten or so hours each week who's just looking for room and board as payment. Don't feel overwhelmed, and don't give up your search--people can help you.

3. Training

This leads to the issue of expertise. It's often fairly easy to train caregivers for basic help, but if you want higher quality intensive therapy you will certainly have to pay more. An ABA therapist with a master's costs $100 an hour, but you can get good therapists working on their bachelor's for around $9.00. This is actually a criminally low rate--ABA therapists often receive much more training than non-therapeutic caregivers have, and non-therapeutic caregivers in Virginia can go for as much as $20 an hour. However, it can be tough to get even 30 hours a week of in-home therapy, and having therapists come in and out of your house may require more of your presence at home. You may need to mix and match in-home therapy and other in-home care. Many special needs' experienced caregivers work for $10-$15 an hour.

Whatever your cost evaluations for in-home care, make sure you remain up-front with your caregiver about your health needs and pocketbook. When you post a special needs opening on, make sure to list all the important needs and details so that you can get the right caregiver for your family. Don't be afraid to ask for free help from your church or community center, and remember that the rest of your family has needs also. Join a support group for families with differently-abled members for resources; many of us understand and sympathize with you. It's common for families with special needs to feel judged by their local community or co-workers, so finding a forum of similar families not only helps families share resources--it also allows you readier access to info about non-judgmental, experienced caregivers and friends. It's okay to ask for help if you have to stay home more while in-between caregivers or if you can't find a caregiver who meets your needs: that doesn't make you any less an educated or empowered person. Families with special needs face a lot of pressures from all different directions, and you have to feel comfortable with your own decisions to do the best for YOUR family, not some imagined ideal.

Blessings, and peace.