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Archive for October, 2011

Hi and welcome to Ask Missy Mondays where I respond to email questions from parents who are having difficulty with their child’s behavior. Today’s question comes from no one in particular but from many parents. Every time we show a parent how effective the iPad is for their child with autism, they instantly want to know how to get one for their child.

While some of our readers may not understand why a family cannot just run out and buy one (we know some families with 3 and 4 iPads!), many of the families with whom we work are struggling financially. So, if you have the finances, then definitely purchase an iPad for your child (and make a donation to the Holly Rod Foundation so more children can have iPads). If you do not have the finances, please read on.

There are several ways to get your device funded so I will carefully review each.

School Funding

First, under the Individuals with Disabilities Education Improvement Act (IDEIA), every child with a communication impairment has the right to an assistive technology (AT) evaluation. Only children with an IEP are eligible for this benefit. If the AT assessment result shows that the child would benefit from services, then the child should receive the device and services at no cost to the family. Training for family members, teachers, and all school staff who interact with your child is also included.

When purchased this way, the device belongs to the school district. Thus, when your child graduates or leaves the school district, the device does not necessarily remain with your child. The IEP team decides TOGETHER if the device should go home with the child each day. Obviously, if a child needs a device at school to communicate, he most likely needs it at home too. However, in some instances, the team may decide against this, especially if your child is prone to throw his device out the school bus window or if you frequently “forget” to send the device back to school.

Your child’s school district is also responsible for the care, maintenance, and repairs of your child’s device. Because the device belongs to the school, they are also ultimately responsible for any apps that are purchased and placed on the device. This means that your child’s app selection may be somewhat limited.

If you already had your IEP meeting, do not fret. Simply write a note to your child’s teacher requesting an additional IEP meeting to discuss AT (and any other thing you would like to talk about). The district must schedule the IEP meeting within a reasonable amount of time. You may have as many IEP meetings each year that are necessary to meet your child’s needs.

If you received an AT assessment and the results suggested that AT was not appropriate for your child, then you need to disagree with the assessment report and ask for an Individualized Educational AT Evaluation. This is known as an IEE and your child may have one IEE at no cost to you if you disagree with the evaluation that was completed by the school team. When your IEE is approved, carefully select an evaluator that will consider the use of an iPad for your child. If a second evaluator decides that an AT device is not necessary then your child will not be eligible for a device from the school district.

Insurance Funding

Your child’s insurance may cover the cost of a device. Coverage for devices varies based on your state of residence, your child’s insurance type, and other factors. Some insurance companies (e.g., Blue Cross and Blue Shield of Illinois) have gone so far as to state that devices like the iPad are not augmentative and alternative communication devices. If this happens to you, connect with your state health care advocate and file an appeal.

If you are lucky enough to have the right type of insurance, you will have to work closely with your child’s speech and language pathologist as well as your child’s primary care physician in order to get a device approved. The process will be time-consuming but when you use this option, the device belongs to your child. You will be responsible for its care, maintenance, and repairs. You will be responsible for purchasing any new applications.

When the device is purchased with insurance funds, the device is serving as a mode of communication. It should not be used as a toy.

Grants

There are many non-profits and foundations out there that are focused on helping provide iPads to children with autism and other disabilities. My favorite is the Holly Rod Foundation. My brother was a recipient of one of their iPads and he uses it to Skype our Dad and to Face Time me. One of my clients also received an iPad from the Holly Rod Foundation. We cannot thank the Foundation enough. Get on their mailing list so you will know when the next round of iPads will be given away.

If you live in Texas, the state has a program called STAP grants that are available to individuals who need to be able to communicate with others. Your child’s speech and language pathologist must complete the application on your behalf. Similar to insurance funding, the device must be used for communication purposes and not for games. This device will belong to your child and you will be responsible for its care and maintenance.

We have recently been made aware of other groups that are giving away iPads. We have not had any experience with these groups so use caution before providing them with information such as your social security number.

Babies with iPads is hoping to give away 4 iPads per year. Their website is here: http://babieswithipads.blogspot.com/

Snapps4kids is also giving away iPads. They recently merged with Easter Seals. Their website is here: http://www.snapps4kids.com/funding-sources-directory/

Have you had success getting a device for your child? Please share so that we may celebrate with you.

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Good Day

In our work, we come across some amazing “kid comments”. In one classroom, we met a boy wearing a shirt proclaiming, “I’m in permanent time out.” Missy found a great shirt for her nephew, Blake. He proudly showed his new shirt to everyone but had no idea why they thought it was funny.

“MY PARENTS ARE EXHAUSTED”

We found the following picture and decided it pretty much says it all.

 

So, here’s hoping that you have a Good Friday! And if you have any great comments that you have overheard, please send them to us!

Get your own “Permanent Time Out” t-shirt here: http://tinyurl.com/67dg786

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We try to review a research article each week. Because so many of you saw the 60 Minutes episode this week on iPad applications (such as Proloquo2go) for children with autism, we thought we would spring board off that wildly popular topic. In case you missed it, you can follow the link above to see the entire clip.

As was asked at the end of the interview, many people wonder if children will ever go on to talk after using augmentative and alternative communication (AAC) strategies such as the iPad. In light of this, we are going to review an article to answer the question. Ralf Schlosser and Oliver Wendt authored the article. The American Journal of Speech and Language Pathology published it in 2008.

The authors set out to review “the effects of augmentative and alternative communication (AAC) intervention on speech production in children with autism or pervasive developmental disorder-not otherwise specified” (PDD-NOS). The authors reviewed 9 studies that were published between 1975 and 2007. The authors extracted data for each child who participated in the studies. This resulted in a total of 27 participants (3 of which participated in one of my own studies! Please forgive me for the shameless self-promotion).

The authors noted that most studies taught children to make requests for items and activities. Additionally, the authors noted that researchers used a variety of communication intervention strategies. These included the Picture Exchange Communication System (PECS) and some version of milieu teaching (e.g., Enhanced Milieu Teaching or Prelinguistic Milieu Teaching).

The results of the analysis “indicated that AAC interventions do not impede speech production. In fact, most studies reported an increase in speech production.” Additionally, the authors went on to note that, “pretreatment speech imitation skills are a very strong predictor of subsequent speech production, regardless of the treatment conditions.”

In summary, if your child is non-verbal and you are considering the use of an AAC strategy, it is unlikely that the device will impede your child’s later language production. Instead, use an AAC device while simultaneously ensuring that your child develops speech. Remember, speech imitation (also known as vocal imitation) occurs after the child learns to do motor imitation so start with basic motor imitation and move on to vocal imitation.

We wish you the best in helping your non-verbal child develop language.

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Hi and welcome to “What Works Wednesdays” where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be.

Today’s story is about a neurotypical little girl named Sophie who was 8 years old at the time we treated her. Sophie had long blonde hair and big blue eyes. She had a heart warming smile that could make you melt. She could also throw a punch better than Mike Tyson. Yes, sweet little Sophie had aggression and that was why we were brought in to help.

Sophie was much like any other child her age. She was not interested in boys, desperately wanted to have friends, and she loved her stuff–and wow did she have a lot of stuff! She had an iPhone, jewelry, and endless art supplies. She also had a doll collection–many of them unopened. She also owned had a stuffed animal collection that could make a Carnie envious.

The good news was that Sophie did not engage in aggression to children at school. Sadly, her sister was the recipient of all that anger. At times, Sophie would threaten to hurt her baby brother but she never followed through on those threats.

Our first step in treating aggression was to determine why the aggression was occurring in the first place. We had a difficult time figuring Sophie out. At times it seemed as if she was hitting to get attention. However, at other times, it seemed as if she was simply taking out her frustration.

After the assessment was completed, we developed a plan to address the behavior. The plan consisted of strategies to prevent behavior from occurring in the future. The plan also included instructional strategies to teach replacement behaviors. Finally, the plan included strategies for reacting or responding to behaviors.

Preventing Behavior (Also Known as Proactive or Antecedent Strategies)

We taught Sophie’s parents to provide Sophie with attention when she engaged in positive interactions with her sister. We also taught them to give her high quality attention when she was being good. We know that this sounds rather simplistic but the research supporting these strategies is unsurpassed. The research also shows that these strategies are rarely used by parents. So we listed some specific positive behaviors for them to be on the watch for and we taught them specific things to say and do when they saw Sophie engage in those behaviors.

Replacement Behaviors

Next, we taught Sophie some strategies to use instead of aggression.

  1. We taught her to get help from an adult when she became frustrated with her sister
  2. We taught her to use her words instead of hitting (e.g., “Sister Suzie, please stop bouncing on the couch.”)
  3. We taught her to walk away if her sister was getting her agitated.

Reactions and Responses to Aggressive Behavior

Even when the preventive strategies and the replacement behaviors are being used, aggression could still occur. Thus, Sophie’s parents needed to have a plan about how to respond when aggression occurred.

First, we taught the parents to avoid providing unnecessary attention when Sophie engaged in aggression. We taught the parents to, instead, provide attention to sister Suzie who was the recipient of the aggression.

Next we asked the parents to have a planned consequence for behavior. They selected time-out. This is an easy strategy to use because it can be implemented anywhere at any time. The other advantage to this strategy is that the parents could direct Sophie to time out without giving her too much attention.

We stressed the importance of telling children about plan before they are implemented. So, Sophie’s parents informed her that she needed to use other strategies instead of hitting. They told her that if she chose to hit instead of using one of the strategies, that she would be placed in time out for 5 minutes.

Is it Working?

The next step was to set up a process for determining if the plan was working.This is important because if a plan is not working, it is necessary to make revisions to the plan. Generally, behavior will respond within the first 4-6 weeks if the plan is appropriate.

We simply asked Sophie’s parents to count how many times the behavior happened each week. Unfortunately, after 6 weeks, there was no change in Sophie’s hitting. After discussing possible alternatives with them, we opted for a different consequence. Each time Sophie hit, she lost one of her stuffed animals. This is called response cost. Many parents want to allow their children to earn back lost privileges.  Sadly, this is an ineffective strategy and only teaches the child that they will ultimately get the toy back. We made a plan for the lost animal to be donated to Good Will for children who do not have good toys.

The parents explained to Sophie how they were going to change the consequences for her hitting. To date, Sophie has only lost 3 stuffed animals with the last incident occurring over one year ago.

Congratulations Sophie on learning how to use your other strategies instead of hitting. Congratulations to your parents for effectively implementing the plan!

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One of the greatest challenges you will face following the diagnosis of your child is determining which treatments to pursue to help your child grow and develop maximally. Many treatments are readily available for treating autism making the treatment selection decisions difficult for families.

To ensure that your child receives treatment that is most effective for him or her, it is essential that you select treatments that have been shown to be effective. Choosing a treatment that is ineffective for your child may cause your child to lose time from effective treatments in order to access the ineffective treatment. Moreover, the ineffective treatment could be detrimental to the effective treatment you are implementing. Even worse, the ineffective treatment could be harmful to your child.

Several factors should be considered prior to starting a new treatment.

  1. The treatment should have a research base to support its effectiveness.
  2. The intervention procedures should be available in a published paper.
  3. The paper describes the participants in the study as well as the methods that were used in the study.
  4. The paper describes the intervention in detail and then presents the results that were obtained from the intervention.

An intervention does not have a solid research base if it only has one published outcome paper. There is one exception to the research base rule. If you are enrolling your child in a clinical trial, the intervention most likely does not have a research base; hence the need for clinical trials. Please note that clinical trials must be approved by boards that have been established to assess the safety of clinical trial for your child. Read all the information you can about the clinical trial, including the consent form. If you have questions, the investigators will make themselves available to you in order to answer your questions.

Once you know that an intervention has been researched, make sure that the research has been published in peer-reviewed journals. Anyone can publish a paper on their personal blog or website. However, the peer-review process helps to ensure that the research is valid. The peer-review process assists researchers in accurately describing their results from the treatment. When a scientist has results that she wants to publish, she submits then to an editor. The editor sends the paper out to several other researchers who are experts in that particular area of stud. The peer-review researchers help ensure that appropriate research methods have been utilized and that adequate experimental control has been employed. If the peer-reviewers agree that the science is sound, then they recommend its publication to the editor. This entire process makes it easier for consumers to know that the research they are reading is valid and accurate.

You will know that the research has been peer-reviewed if it is published in a journal with an editor and an editorial board. Some journals and boards are more prestigious than others. This is determined by an impact factor. Typically, a higher impact factor is indicative of a more prestigious journal.

Once you have determined that the intervention has been published in peer-reviewed journals, check to see that the publications have occurred across a variety of journals. If all the research on one intervention is published in one journal, a greater likelihood exists that the research has limitations or has not been accepted by other scientists. Similarly, it is important to verify that more than one scientist has studied the intervention. This helps to ensure that the intervention outcome can be replicated across people and locations.

In the likely event that you do not have time to critically analyze treatments yourself, you may also turn to various organizations that have devoted time to determining the efficacy of treatments. Each of the entities below review a variety of treatments and treatment methodologies including biomedical intervention, behavioral therapies, medical treatments, and allied therapies.

The National Autism Center developed the National Standards Project, set out to identify the scientific evidence for autism treatments. The report was written and reviewed by a team of scientists who collaborated to reach consensus on the findings. The report may be purchased on their website for $19.95.

The New York State Department of Health established a multidisciplinary team of individuals to critically analyze a variety of treatments for children with autism.  Their findings are available on their website. A booklet of their findings is available at no charge to residents of the state of New York. The information is available for a small fee for non-residents.

Research Autism has created a web page describing the efficacy of a variety of interventions. An independent team of scientists evaluated treatments and posted their findings for the public. The information may be found on their website.

While the aforementioned reviews are comprehensive, the materials are dated and thus, do not include any recent or emerging research. As such, it is important for families to empower themselves with tools for sorting through the science.

Once you have determined that the intervention you are going to implement for you child has been well-researched, then you are ready to select your treatment provider. Carefully select your provider by asking for the degrees and credentials that are available. Ask about training specific to autism and training specific to the intervention that you are going to implement.

In summary, before starting a new therapy ask yourself:

  1. Has the treatment has been researched on children with autism?
  2. Has the research been published in peer-reviewed research journals?
  3. Has the research been replicated by a variety of people in different locations?
  4. Has the research been published in a variety of journals and not just within one publication?
  5. Has the provider had the appropriate training and credentials to provide the treatment to your child?

Good luck sorting through the science!

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Hi and welcome to Ask Missy Mondays where I respond to email questions from parents who are having difficulty with their child’s behavior. Today’s question comes from Tina, who is a teacher in a school district. Tina asks,

“We have several children with feeding problems in our program. Is is appropriate for us to address feeding issues during the school do? If yes, what should we be doing? If no, what can we do to help?”

Tina, this is certainly a timely question. I was recently contacted by a school district asking for consultation and training to help them help their students. They reported that they are seeing more and more children with extremely picky eating habits. Sadly, we are seeing this increase within our practice as well. Additionally, I attended a birthday party this past Saturday and two mothers shared with me that their children were extremely picky eaters.

Many people associate picky eating with autism but the research shows that all children can become picky eaters. Within the population of autism, however, it is quite common to find picky eaters. In fact, in Kanner’s original paper describing autism, over 50% of his sample had serious issues with eating. In our practice, about 80% of our feeding clients have a diagnosis of autism spectrum. The remaining 20% are neurotypical except for their eating.

So, back to your question, Tina. I’m going to break your question in to parts if you don’t mind.

  1. Children who have an Individualized Education Program (IEP) or 504 Plan
  2. Children who do not have an IEP or 504 Plan
  3. Importance of Parent Involvement

Child with an IEP or 504 Plan

I feel strongly that it is appropriate for you and the other school staff to address feeding issues. This is particularly true if the child is on an IEP. Under the IEP, you are required to develop goals and objectives to address academic and functional skills. Feeding, eating, and drinking are functional skills and should thus, be addressed within the IEP. First, an appropriate assessment is warranted to determine what specific needs the child has. The assessment should be completed in conjunction with a speech and language pathologist (SLP), the occupational therapist (OT), and the behavior specialist or BCBA. The family should visit their family doctor and/or gastroenterologist and/or allergist to rule out any underlying medical issues or food allergies.

Once the assessment has been completed, it should be used to develop appropriate goals and objectives. This component should also be done in conjunction with the SLP, OT, and BCBA.

The next step is to determine which intervention strategies are needed. Each professional will develop techniques within his/her own practice. For example, the SLP will address swallowing issues while the OT will address oral motor function. The BCBA will help identify strategies to address the behavioral aspects of the condition.

Finally, the team should develop a process for monitoring progress to ensure that the plan is working. If changes are not observed within the first few weeks of intervention, then the team should meet to discuss possible changes to the program.

Child without an IEP

Unfortunately, children without an IEP or 504 plan do not have the same educational rights as children who do. However, I still feel strongly that school staff should address feeding issues for all children.

First, an assigned lunch monitor should be available for each class. Often times, only 1 or 2 people are assigned to lunch duty and they are responsible for 5-6 classes of children. This is too much. I recognize fully the expense of assigning one monitor to each class. However, if children are not eating, they will not benefit from the afternoon instruction. Thus, the monitor should ensure that each child is eating what is sent from home or what was served that day. If a child is not receiving appropriate lunches from home, the parents should be contacted to determine if education is needed regarding appropriate lunch foods or if it is a financial issue and additional financial support is needed.

Second, additional supervision is needed as children move through the lunch line. Children need to learn to eat a healthy well-balanced diet. Any child under the age of 12 is incapable of making these decisions on their own. Our children tell us the horrors of school lunches on a regular basis (e.g., “Susie ate a bagel for lunch and she threw most of it away”).

Finally, children and parents alike need to be taught about appropriate eating habits. Offer free training sessions for parents  in the evenings. Incorporate healthy eating habits in to the curriculum. Teach children how to make good choices and why they are important.

Parent Involvement

I cannot possibly over stress the importance of family involvement in this process. Parents should be involved in eating/feeding issues from the beginning including during the assessment. Parents should participate in the goal setting process. Parents should also be included in progress monitoring.

Remember, children do not come with instruction manuals. When parents run in to problems while raising their children, they turn to books, online resources, other parents, and teachers for help. Picky eating in children causes a great deal of stress for parents. Offering training, counseling, and other services will help families remain connected to the school. Schools who have high rates of parent involvement have better outcomes for their students.

I know this was a long-winded answer to what seemed like an easy question. Unfortunately, not all of the questions we receive are easy ones. If you have a behavior or situation that you need assistance on, please email me at askmissy at applied behavioral strategies dot-com.

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Well, we are most certain that the topic of today’s post is probably not the most appetizing to many of our readers. However, given one of the headline stories on yahoo, we felt compelled to chime in. We should first clarify that we are not nutritionists, nor are we pretending to be. (On a completely unrelated note, we can recommend some good nutritionists if you are looking: Kelly Barnhill, Vicki Kobliner, and Dr. Liz Lipski to name a few).

While we are not nutritionists, we routinely see children who are having feeding difficulties. We also routinely see children who have a number of food allergies and/or intolerances including issues with cow’s milk. Because of this, we now have extensive experience with children who follow a dairy-free, lactose-free, or casein-free diet. We have seen children experiencing detox symptoms when they stopped consuming casein. We have seen children start sleeping through the night when they stopped consuming milk. We have seen children stop having seizures when they stopped drinking milk. In summary, milk must be the devil. Well, at least that was a thought until we realized that someone else had already taken claim to that statement (i.e., Devil in the Milk is actually a published book!).

We are not here to bash milk. We are here to simply say that if you (or your child) is not going to consume milk and milk products, that you should seek some assistance from an appropriately trained person before quitting. In addition to having some help, you should also know your milks. Multiple milk varietals are now available in many places. For example, if you are lucky enough to get your cup o’ joe at Whole Foods, you will be overwhelmed with your choices for a latte. You may choose from soy, almond, rice, hemp, or coconut (as well as 2%, skim, half and half, and whole). “WHAT? Can you repeat that? I can actually have a choice of dairy-free, lactose-free, casein-free milk substitutes?” The answer is “yes, you may.”

Again, we are not here to explain to you the pros and cons of each of your milk varietals. That is what your trained professional is available to do. We can, however, give you some pointers so you don’t make the same mistakes we have made. So, in famous Dave Letterman fashion, we are going to give you the top 10 reasons you need a trained professional to help you quit your (milk) habit.

10. Drinking hemp milk will not have the same effect on you as the more popularized hemp product.

9. Soy milk curdles just like cow’s milk.

8. Coconut milk is sweet, so you do not need to add a sweetener in your latte.

7. The only difference between rice milk and water is…well…..water is clear.

6. Almond milk is now available in a yogurt (if that is what you want to call congealed white stuff in a cup).

5. Milk substitutes are often available on the shelf and only need refrigeration before consumption (now doesn’t THAT sound tasty?).

4. Milk substitutes also come in ice cream form! Mmmm thoughts of peanut butter zig zag is making my mouth water.

3. Milk substitutes work well in smoothies, puddings, desserts, and cereals.

2. Almond breeze is now available in bulk at Costco.

And the number one reason you should not quit your milk habit without professional help:

1. Coconut milk with live cultures is NOT the same as regular coconut milk.

Sadly, we learned the hard way when one our clients ate buttermilk-style coconut milk on his cereal. Poor fella. And he still ate the cereal without putting up a fight! We TOLD you we could get your child to eat ANYTHING.

Happy detoxing! (but only with the support of an appropriately trained professional)

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