How to Serve Families with Disability - by John Knight

I was enjoying some friendly conversation with old friends after church when my teenaged daughter whispered in my ear, “Dad, he’s losing it.”

A quick glance at my son confirmed her assessment of her older brother with disabilities. Experience had taught us that his vocalizations would only get more intense and much louder. We needed to go.

I felt a heavy sigh welling up as yet another pleasant moment was cut short by my son’s behavior caused by his disabilities. It was another small disappointment added to the 10,000 others before it.

This is an important part of the story about disability in the lives of families. It frequently isn’t the “big things” that are sapping our strength and hope, but the constant little things that wear away at the foundations of our lives.

You Can Help

Here is where the church can have a profound impact on a family! Paying attention to small things that are wearing away at a family experiencing disability can help maintain their foundation and reduce the need for a bigger intervention down the road.

But how? I’ve been to many conferences, read dozens of books, reviewed hundreds of blog posts and nearly a thousand articles. As simplistic as it sounds, the best advice boils down to three things: trust God, get to know the family, then act.

1. Trust God

Trusting God is, by far, the single most important of the three. If we are

1. truly uncondemned and set free (Romans 8:1–2),
2. with the full knowledge that all things work together for good (Romans 8:28),
3. in a relationship with someone God has intimately created (Psalm 139:13),
4. even with disabilities (Exodus 4:11),
5. which is for his glory (John 9:3),
6. and he has chosen that person for the good of his church (1 Corinthians 1:27),
7. even calling them central to his purposes (1 Corinthians 12:22),

then you can trust God to equip you to serve families that experience disability.

Based on that sure knowledge, getting to know a family that is different because of disability isn’t so scary. Their God is your God and he is good and entirely trustworthy.

2. Get to Know the Family

Getting to know somebody also provides insight into what might be useful in that family’s life. The books and blog posts with lists of ideas about serving families then begin to take more specific form. Plus, the person with the disability becomes a real person who is interesting and gifted and maybe even fun to be around.

This is the first big step in communicating to this family what you really believe about God’s sovereignty in disability. This is where your theology — your trust in God — is expressed. If you know a family experiencing disability, reach out, introduce yourself, get to know them.

3. Take Action

Action then becomes an expression of trust in God informed by knowledge about the family. Action will always entail some risk — maybe the family doesn’t want what you are offering. But action done in a spirit of affection and respect is generally well received even when imperfectly executed. When your help is harshly rejected, and it could be, then trusting God is even more important. Being faithful to God’s call to act is more important than the result you achieve.

Be proactive. Many families, by necessity, must focus their attention on the big issues and won’t be responsive to the question of “what can I do for you?” If you add to their list of things to do, like texting or emailing when something is needed, they won’t do it.

Which means you should take the initiative, after prayerful consideration. The impulse to help is probably a good one, but praying for wisdom is still necessary. Then acting in faith, trusting that God is in it, rendering it to him, demonstrates that God is really big to you. This approach will confound even the hardest person (like I was) at your dogged desire to love them.

What Is More Sure

In this broken world the disappointments add up quickly. Disability feels relentless. But it will end someday, swallowed up in the ultimate promises of God to make all things new for his glory and for our eternal joy.

Until that day, the grace and strength he promised are more sure than the sun rising tomorrow. And maybe you’re the very person, acting in faith, who will remind a family like mine about the supremacy of God over all things (including disability) for the joy of all peoples through Jesus Christ.

Source: http://www.desiringgod.org

The author, John Knight is Director of Donor Partnerships at Desiring God. He is married to Dianne and together they parent their four children: Paul, Hannah, Daniel, and Johnny. Paul lives with multiple disabilities including blindness, autism, cognitive impairments and a seizure disorder. John blogs on issues of disability, the Bible, and the church at The Works of God.

Dear friends and readers, today is United Nations International Literacy Day. Its a day for us to reflect on the fact that many children in my country Nigeria, and in Africa are left behind in terms of education simply because they require Special Education. Please take a few minutes to participate in our online survey by clicking the link or the picture below. Thank you for your time.

https://apps.facebook.com/126231547426086/lokuc

Still on Reinforcement...

The past few weeks have been quite busy for me as I've been involved in planning for the launch of a new blended (i.e. online and physical) special education program. I'll give you more information on this project in the coming weeks, but just so you know, the name of the project is: Comprehensive Autism and related Disabilities Education and Training (C.A.D.E.T.) Academy.

In the meantime, back to the topic of 'Reinforcement.' I have embedded a YouTube video which demonstrates examples of different types of reinforcers. The video also describes the proper way to deliver reinforcers and provides suggestions to ensure that reinforcers maintain their interest to the child.  

As always, your comments are appreciated. Thanks.

Reinforcement

Reinforcement is the process of increasing desired behavior in children with autism and other related disabilities. There are basically two types of reinforcers- extrinsic and intrinsic.

Extrinsic rewards or reinforcers are those that are unnaturally added to the situation. For example, if a child is given a piece of cake for touching his nose when asked to do so. The child is said to be extrinsically motivated because of the piece of cake. Extrinsic rewards are usually efficient at the initial stage especially when the age and cognitive level of the child are put into consideration. However, it is helpful to understand when and how to quickly transition to more intrinsic or natural reinforcers. Extrinsic rewards may hinder generalization because the child expects to be rewarded whenever he/she exhibit desired behavior while rewards (especially primary reinforcers such as food) may not readily be available in some environments.

Intrinsic or natural rewards are the natural outcomes of the child's behavior. For example, a child walks towards a table with bottles of water and juice, and when asked if he/she wants water or juice, he/she responds by saying juice and gets what he/she wants – juice. The child is said to be intrinsically motivated because he says what he wants and gets it. Intrinsic rewards usually occur naturally, usually more motivating and easily generalized.

Some of the common challenges people face when using reinforcers (intrinsic or extrinsic) are as follows:

1. Rewards are always expected when desired behaviors are exhibited.
2. Difficulty finding the appropriate activities or items that can be used as reinforcers.
3. The child may get tired of items or activities used as reinforcers and one has to come up with new ideas to replace the old one.
4. How to achieve generalization when reinforce is taken away or stopped.

(Look out for how to decide on what makes a good reinforcer and how to determine activities that motivate children living with autism in my next post). Thanks for reading, your comments are always appreciated.

Still on Discrete Trial Teaching (DTT) for Children with Autism...

When working with children with special needs, it is always important to note that progress could be gradual or immediate, but consistency with adopted practice is key. Parents become worried when they realize that their kids have been going through sessions of intervention and they can see little or no progress. However, when the change is obvious, they complain that it is inconsistent.

I get lots of phone calls from parents and caregivers with such concerns and I try to provide professional recommendations to the best of my ability particularly when I'm given adequate information, observations works better for me though.
The other day, I got these three different phone calls from the same parent in less than 15 hours.

4:00pm on Thursday...

Mum: Hey Lola, Uche (pseudonym) was with me in my bathroom early this morning  while I was trying to clean up. He noticed the toothbrushes on the rack and said “brush teeth” (ordinarily, he throws lots of tantrum when it’s time to brush his teeth) so I hurried to get his tooth brush and we had fun brushing his teeth together. See?  I didn’t have to reinforce him! Yay!!! We are making progress. I just wanted to say "thank you," I’ll talk to you later…bye.

(As I listened patiently, I was super-excited for Uche’s mum)
Lola: Happy for you! Bye.

7:00pm same Thursday...

Mum: Hello Lola, We’ve been trying to get Uche to brush his teeth for the past hour and it’s been tough!

Lola: You should try using the reward system.

Mum: We did! I told him he will get to watch Barney after brushing but he refused, I even showed him his favourite chocolate and was willing to let him eat it after brushing but it didn’t work! I think he is regressing. I have tried everything I know to do, I think I’ll just let him  be…I am tired, I pray he’ll agree to brush tomorrow. Goodnight.

Lola: Okay. Have a good one!

8:30am on Friday...

Mum: Lola, we had a good time brushing his teeth this morning and all Uche wanted was to hold on to his toy phone while brushing...this boy is so unpredictable, I pray that everything goes well in the evening.

There are several reasons why most people working with children with disabilities may not see desired changes in these children. The above conversation and other experiences  leads me to some very important topics that I will be sharing on my blog for the next couple of weeks. First of these topics is 'Motivation.'

Motivation.

Everyone loves to be motivated. The reason most people go to work every day is because they expect to get paid. I wouldn’t embark on a 20 minutes drive to the cinema or pay money for a movie that does not feature at least one of my favorite actors. This is the same for little children too (with or without disabilities). When a little child says “dada” for the first time, everyone around that child cheers him up and get all excited, this kind of attention serves as a form of motivation for the child to say more words.

Motivation is a major factor for all children when learning. Motivating a child with autism can be rather challenging for a number of reasons. For instance, I have found that children with autism are often not motivated by social reinforcement such as attention, praise, affection or other activities that interest other typical kids. However, this is not enough reason for parents, therapists, teachers and other caregivers to conclude that nothing motivates these children. Every child has unique interests and preferences but it requires creativity, time and dedication to determine such interests especially when the reinforcers may appear inefficient or limited. (Read more on the types of reinforcement and the common challenges of reinforcement in my next post).

Discrete Trial Teaching (DTT) for Children with Autism

As a special education professional, my job description entails observing, supervising, training, providing recommendations, counseling parents and so on. I have realized while doing all or some of these that DTT is a common topic of discussion. Many of my clients (teachers, therapists and parents) confirm that they use this method and still do not see the desired result in their children and I usually have to go through the process of explaining what DTT is all about. 

  

This morning while driving down from church, three words kept resounding, in my head "comprehension", "application" and "manifestation." And then it all started coming together, "Comprehension" - understanding; "do these people really understand what DTT is? "Can I possibly give what I do not have? Application- how is this applicable, and what is their level of fidelity to the practice? Response to these questions will bring about the desired result in the children, that is: ''manifestation."

What is Discrete Trial Teaching?

The DTT is a method that is generally used to provide intervention for  young children (ages two through six) with autism in order to maximize learning. It is also used with older children, especially those with significant developmental delay. This method is based on the principle of Applied Behavioral Analysis (ABA). DTT is simply good teaching for developing communication skills, cognitive skills, play skills, social and self help skills. It involves teaching in simplified and structured steps rather than teaching a whole skill all at once.

The Format

The format for DTT involves the following steps:

a.  Breaking a skill into smaller parts.

b.  Teaching one small part of the skill at a time until it is mastered.

c.  Allowing repeated practice in a concentrated period of time.

d.  Providing a prompt for the correct response and fading the prompt as necessary.

e.  Using positive reinforcement procedures.

    

In DTT a small amount of information is given to the student, and the response is immediately reinforced or not reinforced as the response would determine. DTT involves numerous trials in order to strengthen learning. Each small bit of information given must be mastered before moving to the next.

Here is an example of what a session may look like:

The special education teacher/therapist gives the child an instruction (antecedent) e.g "touch your nose." The child responds (behavior) by touching his/her nose, since the response was correct, the child receives a positive reinforcement as the consequence of his/her behavior. If the response (behavior) is incorrect, a prompt replaces the reinforcement, once the prompt leads to a correct response a reinforcement is then administered. If the child still does not give a correct response after prompting, the teacher would have to withdraw the instruction ("touch your nose") and replace it with an easier skill that has already been mastered by the child such as "hands up." It is important to watch against frustrating the child and to ensure that each session ends with success (Read more on types of reinforcement and prompts in my subsequent posts).

   

Other important factors in using DTT are setting up the session environment, regular data collection in order to monitor progress, fading of prompts and reward, and generalization of learning or skills taught to other materials, environments and people.

The Family's Role in Special Education Intervention

In the course of my interactions with parents having children with Autism Spectrum Disorder (ASD), I often encounter those who want to "dump" the child on a therapist and expect "miraculous" changes in the child. I must emphasize that active involvement of parents and siblings is very important in special education intervention for a child with autism or any related special needs. No one knows a child better than the parents. Remember that you as the parent will in the end be the one who cares the most for, and is affected the most by your child's condition. Besides, you spend more time with your child than anyone else. You can use that precious time to generalize the teaching goals into everyday living situations and activities.

Parents are positioned to provide direct therapy to their child. However, as parents better understand, having a child with autism takes a huge emotional toll and coordinating the treatment team can be a daunting task. Therefore, whenever possible, it is recommended to use hired therapists to do most of the intensive work. This allows parents to have some respite and the remaining time spent with their child can be more enjoyable and productive.

Parents can use the child's time that is not spent in intensive programming to develop play, social and self-help skills. Spending time outdoors by visiting the park, shopping mall, close friends and relatives' homes are opportunities to generalize skills and work on improving  behavior. Similarly, brushing their teeth, having a bath, getting dressed, and having a meal are just a few examples of everyday routines that serve as opportunities for teaching.

As a result of these, the child's day if filled with activities that become part of the therapy process. More importantly, the parents become an integral part of the special education intervention team. Therefore, it is important to involve the child in the family daily routine of living, this will reduce any form of isolation for the child.