TEN COMMON ROADBLOCKS WHEN
BEGINNING A HOME PROGRAM

By Sabra Gelfond Ingall, M.A., CCC-SLP

Over the past 15 years, I have worked with countless families who have children with Autism Spectrum Disorder. I have witnessed common challenges each family must consider as they forge ahead in the many decisions they face. Listed below are the most common questions families are looking to resolve along with suggestions explaining how to jump those hurdles as smoothly as possible.

Doing a home program will take so much time away from my other responsibilities, such as my other children. How can I maximize my time so that I can do this?

Managing a home program places tremendous demands on your family. This is particularly true when you first begin your home program as you, your child and your home-therapists (new to your child) must all experience a learning curve. For you, this includes managing your child’s schedule, the schedules of your therapists, purchasing materials and organizing your work area. For your child this means having many new demands placed upon him. Moreover, this is all in addition to the demands of your already complicated every day lives.

Although you recognize that starting a home program may be the best thing, (there’s more scientific support for home programs than any other intervention for children with Autism Spectrum Disorder) it will be laden with internal challenges and demands. Know in advance that there will be setbacks and times when you feel it is too much to handle. This will facilitate your pushing onward (as you would have your child do) through tough times. Remember the first three months will be the most complex, just as they are in most beginnings.

After this time period, your child is likely to look forward to the routine as he becomes comfortable and familiar with what is expected of him. Your child’s behaviors will become more positive and will be refocused towards learning. In fact, it is likely that he will even enjoy the newfound structure. Finally, you and other family members will all begin to find the routine comforting. Once your program is in-place, you can look forward to a household that runs smoother, is more organized and structured, and allows you to maximize your time and better manage day-to-day responsibilities.

I really want to begin a home program, but my child already has so much going on that I feel like I might be asking too much of him. Should I wait until he’s older and can handle more?

NO, NO & NO!! Imagine not being able to express yourself or tell others what you want or need, such as when you need to use the bathroom or feel thirsty. One of the reasons your child exhibits negative behaviors is because he does not understand the world around him. Now he is likely to have difficulty understanding words and concepts as you present them to him and therefore finds language and communication confusing. A major benefit of a home program is that by breaking concepts down (an integral component of home programs) you allow your child to learn how to learn. I cannot stress the importance of that idea. Soon after you start your home program, your child’s communication skills will improve and both you and your child will be less frustrated.

Finally, waiting for your child to get older will allow critical time to pass and in the long run make your journey more difficult. The younger your child is when beginning a home program the sooner he will benefit from that program. Think of it like you would when learning a new language - the sooner and younger you are when you begin learning that language, the more likely you are to become fluent. In fact, your child will be able to handle more because (as with anything) the more you know the easier it is, and the more successes you have the more confidence you will have when the next challenge arises. So, don't worry about asking too much from your child - he will rise to the occasion.

I’ve made the decision to begin a home program, where do I begin?

First, congratulations on your decision. It must feel like quite a challenge to you, but you will see that the reward of communicating with your child will certainly outweigh the roadblocks and pitfalls you currently have as well as those you are likely to continue to encounter on your journey. When choosing someone to design your home program, it is important to find an experienced mentor. Typically, professionals involved in designing home programs include: Speech-Language Pathologists, Special Educational Consultants, Behavioral Consultants and (some) school programs.

Some questions you may want to ask these specialists include:
• How long have you been designing home programs?
• How many children have you worked with?
• What kind of special training do you have?
• Can you give me the names of a few families you have worked with?
• Do you provide home therapists and if so, how are they trained?
• How do you follow-up on the initial program?
• What happens when I have a problem with my program?
• How do you monitor my child’s progress?

Generally, I have found that the more experience a specialist has the more likely they will be able to creatively address your child’s novel and individual needs. My fifteen years of experience as a therapist has taught me that the more children I see, the more opportunities I have for growth as a therapist. Furthermore, I have often seen families that are wait-listed for a number of months because there is no professional near their home or they simply cannot afford the challenging costs of a home program. Don't let these issues impede your child’s progress. Get started in anyway you can. For example, you can use the book Behavioral Intervention For Young Children With Autism to get a jumpstart on your home program.

Or, for those families who are interested in a more structured and comprehensive program that is cost effective and can be run from your home, Marching Ahead to Progress (MAP) has been found to be very helpful. This advanced computer program not only contains a complete home program, but also has video clips of speech therapists at work and a guidebook demonstrating the techniques used in operating a successful home program. Beginning your home program can take some legwork, but you will find it worth your while in the long run.

Beginning a home program can feel like an overwhelming obstacle. As a parent, I am concerned that I will do all of this work and not be able to tell if my child is benefiting from the program. How can I tell if the program we choose is working?

There are numerous ways to monitor your child’s progress. I urge you to consider any or all of the following:

Videotape

I cannot stress enough what a wonderful tool this can be. Think of it like this: When someone is dieting and slowly loosing weight you generally don't notice it if you see this person on a daily basis. However, if you went for a month without seeing the person, the loss would be more obvious to you. Videotape your child periodically, perhaps even once every 2-3 months. Enjoy looking back and observing the changes in your child.

Tracking sheets

Monitor your child’s progress by actually tracking the programs your child is working on. Keep a notebook of the different goals and a section in the notebook dedicated to listing all of those goals. Once a month, look back at your program and update your goals. Make sure you date it, so that you will be able to see what kind of progress your child has made.

Diary

Keep a diary of your child’s behaviors and skills. Once a week or even once a month, write a brief description of what your child is doing. Some parents will want to get very specific while others will want to make only brief summaries. Ask yourself what changes your child has made. Be sure to include qualitative changes, which for some children can be very important. For example, if when you began your program your child was making only spontaneous sounds or saying “/m/” to request “more” and a month later he was saying “/maw/” that would be a qualitative change of tremendous importance.

Does it matter where we do the home program?

Absolutely! You should have a specific work area set aside for your child. Make sure the area is lacking in distractions, such as phones, television, radio, other children playing, toys strewn all over, etc. Also, have your child sit at a small table with you during the work time to help keep him focused during your session. Keep in mind that whether you are using a book, the MAP program or an individually designed program, little changes in your surroundings can make a huge difference in your child’s ability to focus and facilitate learning, so don't overlook these seemingly small modifications.

Hiring a home therapist sounds very expensive. Can I do the home therapy myself?

This question is asked a lot. Some parents, especially those with no other children (or older kids who are in school) feel that they have the time. However, a lot of parents are concerned about their efficacy with their child, particularly if their child happens to tantrum a lot or exhibit negative behaviors. It is easier for someone who is not the child’s parent to withstand a lot of behavior when the child does not want to sit down, etc. Successful initiation of a solid home program can be difficult, time consuming and emotionally draining. We recommend that you take on this task with as much help and support as possible.

Most families conducting a home program also hire “home therapists” who are generally graduate students in related fields such as speech pathology, special education, and psychology. These students must be trained so the program is consistent amongst the people working with your child. This training should be offered as part of your home program. For instance, the MAP program does train a "home therapist" on the techniques used in a home program. As a guideline, a “home therapist” is paid between US$8 and US$13 per hour, depending upon experience and what part of the country you live in.

Where can I find a “home therapist”?

First, ask whoever designed your home program if they have a list of “home therapists” in your area. My Center, National Speech/Language Therapy Center, provides on-going training and has established relationships with graduate programs and students. In addition, you can contact the local graduate school in your area and ask if there are students available or a place where you can post a job ad.

Make sure when you interview people that you stress the fact that they will be working with your special needs child and that it is imperative that they be responsible and intend to work with your child for an extended time period. This is not a job to do over winter break! I have encouraged families to use a contract with their “home therapists”. This helps to create an emotional bond and commitment to you and your child. Remember to check references just like you would with anyone you would employ.

“Intensive” therapies were recommended for my child. What does “intensive” therapy mean? A couple of hours? More? How many hours per week should my child be doing the home program?

An “intensive” therapy program is using your time and your child’s time to maximize progress. In other words, your child should be receiving therapy as frequently as possible for both his benefit and your own. Here are guidelines as well as some of the benefits for allocating frequent sessions to your child’s home program.

The frequency and repetition of new concepts at a young age enables a child the opportunity to recall information and store it permanently into memory. If too much time lapses (and this could mean even a day in some cases) between two sessions, there is a distinct probability that it will take your child longer to master certain concepts.

The more sessions your child has almost certainly dictates how much your child will learn and how quickly he will progress through a home program. If your child is meeting for only five hours a week, chances are you will have to cover the same material repeatedly and feel as if the program is moving slowly, whereas if your child is meeting for 30 hours per week you would certainly see greater progress sooner.

Children on this spectrum like routines. The more often you meet in a session the more likely your child will cooperate when it is work time. Remember the foreign language analogy– you will learn at a greater rate if you are exposed with greater frequency. The most rewarding journeys take the most commitment and time to complete.

I can’t imagine ways to motivate my child to work. How can a home program be successful if my child won’t sit still or attend?

Over the years, I have read countless books on motivation and reinforcement. The one common theme that I have noticed and seen first hand regarding all children is consistency! All children will test you to see how far they can push before a parent puts the proverbial foot down. Special needs children are no different, perhaps with the exception that they may not recognize when that foot is being put down (your consistency will allow them to learn this). Regardless, your child will still be looking for guidance and reinforcement from parents and caregivers.

The key to helping your child learn can be summed up in one word – reinforcement. If you reinforce your child well you will be able to successfully shape new behaviors and teach new concepts. Having a well-designed home program is simply not enough. If you do not properly reinforce your child your program is bound to fail.

A couple of other thoughts about reinforcement: reinforcing positive behavior or performance for a child with Autism Spectrum Disorder is to give the reward immediately following the action. For example if you say, “Touch truck” and your child does what is requested, then reward immediately and with enthusiasm.

Provide reinforcement every single time he does it right, especially in the early stages of a home program. For some children a hug, tickle or an enthusiastic “Hurray!” is a great motivator. Other children might want a food item or special toy. Provide reinforcement every single time he attempts to do it right, especially in the early stages of a new program. You want to ensure your child learns to equate trying to succeed with succeeding on some level.

• If you are using a food item to reinforce your child, make sure it is a small quantity, such as one grape, one chip (even a piece of one) or one M&M. Vary your rewards. Children become bored with the same thing. Over time require your child to do more before offering the reward. Be overtly proud and enthusiastic. Grade your reward. In other words, a better response gets a greater reward.

Always keep in mind that this is very hard work for your child and that your reward system is critical to your child’s learning. We suggest that you read up on ways to make rewards meaningful. (For more detail on how to reward, motivate and reinforce your child we refer the reader to the “rewards” section of the MAP program where video clips can assist you.)

What are some ways I can save on materials cost?

Home program materials can be expensive, but there are ways to save on the materials. Here are some that other parents have used:
Use Dollar Stores! They usually have party blowers (oral motor skills); candies and chips; toys for young children; and inexpensive storage bins to keep your materials stored.
Visit garage sales and flea markets. A lot of great buys can be found at these sales at a fraction of the cost of new store bought toys.
Make them at home. It may be worth your while to cut out and laminate pictures-- they are less expensive than the cards you purchase, as well as equally functional.
Network with other parents. Children can become bored quickly with toys, so check with friends and swap toys.

In considering and running a successful home program for your child you are likely to encounter many of the aforementioned challenges. Every journey has unforeseen roadblocks and forks in the road. All you can do is prepare as best as possible so that if and when you encounter a roadblock, you will be able to problem solve and discover an alternate route. Remember to minimize the difficulties, maximize the (sometimes) small feats, and take each leg of the trip one step at a time!

Sabra Gelfond-Ingall, M.A. CCC-SLP is the Executive Director of National Speech/Language Therapy Center in Bethesda, Maryland. Ms. Ingall has worked with children on the autism spectrum for over 15 years, as well as being the initiator and one the driving forces behind the development of the MAP computer program (written for families and caregivers of children on the autism spectrum).

Click here for the full range of autism and Asperger's fact sheets at www.autism-help.org
Click here to read a fact sheet about creating home-based programs

This autism and Asperger's syndrome information is reproduced with permission and copyright remains with Sabra Gelfond-Ingall, M.A. CCC-SLP, Executive Director of National Speech/Language Therapy Center in Bethesda.