Patricia S. Phelan runs The Law Office of Patricia S. Phelan - a practice dedicated exclusively to the field of special education law and advocacy. Ms. Phelan has been practicing law for eighteen years and is an experienced litigator as well as a parent of a child with a disability. For guidance about your child's rights under the law, please contact Ms. Phelan by email at PSPESQ@aol.com or telephone at 845-398-3273. For more information about The Law Office of Patricia S. Phelan, go to http://www.phelanspecialedlaw.com/.
PART FOUR
Who Says Children Don’t Come With Directions!
The first day of school is approaching. Knowing that a teacher will be working with your child with special needs for the first time can be unsettling. Will they know how to address her needs? How much do you tell them about your child so that they know how to support her, but are not turned off from working with her? How do you protect your child, without looking like a neurotic parent? How do you make constructive suggestions, without sounding like you question the teacher’s ability or professionalism?
Don’t give up. You will get through this.
As a parent of a child with PDD-NOS, an Autism Spectrum Disorder (ASD), I imagine like many of you I approach my child’s novel experiences with great apprehension. While so many of my friends look forward to the summer, my husband and I struggle with the constant fact that the change in routine and lack of structure are always a challenge for our child.
We have learned over the years, through the benefit of some wonderful professionals as well as trial and error, that certain strategies can be helpful for our children with disabilities to minimize the stress of new transitions.
Based upon my personal and professional experience as a special education attorney, I routinely suggest to my clients that it is a good practice to learn those strategies which can help your child. Once you understand how to help your child, you can convey these strategies to those working with your child.
Create an Instruction Manual
In order to “summarize” your child’s strengths and needs, it is helpful to give professionals working with your child a copy of the PLOP list you created as we discussed in an earlier Part of this Series. This gives the teachers, counselors, etc. an overview of what strengths and needs they can expect from your child.
Critical to your child’s “instruction manual” is also a summary of helpful strategies which people working with your child should use. Show this to professionals before they begin working with your child. In addition to school personnel, these professionals may also include summer camp counselors, people supervising after school activities and childcare workers.
One format I have found helpful in my practice as well as my personal life is: Mark your page with 3 columns (this can easily be created as a “table” in Microsoft Word. The first column lists the problematic or maladaptive behavior your child is likely to display. The second and middle column shows an example of the behavior. Finally, the third and farthest column to the right lists the strategy recommended to deal with the behavior of concern.
I recommend keeping a running tally of this information. Each year, update your entries by adding them in a different color. Hand in this instruction manual at IEP meetings, the beginning of the school year, or the first time anybody new is working with your child.
In my experience, professionals have been appreciative of this valuable, heads-up insight.
Instruction Manual for your Child on the Spectrum
A large part of my practice deals with helping children with ASDs. While nothing serves as a substitute for individual advice from the professionals guiding you and your child, there are a number of strategies suggested below which tend to help many children with an ASD. They are incorporated into a letter written by Jene Aviram which I recently read on the Natural Learning Concepts web site.
If you are a parent of a child with an ASD, consider filling in the blanks and sending in this letter as an instruction manual for your child. If you are an educator, consider implementing these strategies with children with an ASD.
To:________________________________
Thank you for assisting my child. Here are ten points you might find helpful about children on the autism spectrum.
1. Where did he go?
A group of children are all peering into the duck pond while the leader explains their habitat. The counselor looks down at the child she’s been assigned to. Horrified, she notices that he has disappeared. “Where did he go?” she thinks in a wild panic as she races off to find him.
Children on the autism spectrum are easily distracted. If something grabs their attention, their instinct is to check it out. It’s a good idea to remind children on the spectrum that it’s important to stay with the group. Even so, make sure to keep a consistent check on their whereabouts to make sure they are safe.
I would also like to add some extra information about my child:
2. Participation
All the children are happily working on an art project EXCEPT for the child on the autism spectrum. The paraprofessional is trying everything she can to motivate the child and is practically gluing, pasting and coloring with her hand over the child’s hand. The child is still protesting and the paraprofessional feels uneasy. “Should I insist he does this or should I let him off the hook?” She wonders to herself.
Children on the autism spectrum often have different interests to typical kids. While it’s perfectly fine for kids to have their preferences, there are many kids on the autism spectrum who would never participate in activities given the choice. As you can imagine, never participating in life doesn’t hold a very promising outcome. On the other hand, we certainly don’t want to cause undue stress in a child. We do our best to find a balance and a compromise.
Children on the autism spectrum appreciate structure. They might be more willing to do the activity if they know exactly what’s expected of them and when it’s going to end. A couple of strategies that might work are telling the child that he has to do six things in the activity and then he’s done. Make sure you count them down as he does them. Another strategy is to show them the clock or use a timer. Let them know that when the little hand reaches the 3 on the clock, the activity is over and then it’s time for snack. A third idea is to draw a small schedule of the activity. Example, you could draw a scissors, glue, crayons and then the word DONE. Explain the schedule to them in as few words as possible and assist them if needed.
I would also like to add some extra information about my child:
3. Privacy
The children are all excited because it’s time to go swimming. The instructor is explaining the rules and telling the kids where the changing rooms are. Out of the corner of his eye, he is shocked to see that the child on the autism spectrum has already started undressing and is practically naked.
Children on the autism spectrum are not always aware of privacy rules. Sometimes they’re expected to undress in group situations (such as in gym class) and other times, he’s supposed to do this in privacy. It’s all very confusing to the autism spectrum kid. It’s a good idea to let the child know beforehand where the bathrooms are and where he should dress and undress. Explain very clearly where this designated area is and who he should call if he needs help.
I would also like to add some extra information about my child:
4. Turn taking
The children are bowling and the child on the autism spectrum is thrilled. This is his favorite game! There’s just one problem. He is so excited, he can’t wait his turn. He keeps grabbing the ball and knocking down the pins. The other kids are getting really upset and the assistant isn’t sure how to handle it.
Turn taking is a difficult concept for those on the autism spectrum. They will likely need frequent reminders about waiting their turn. A couple of strategies that might work are to use the “Pass the token” method. Get an object, for example a token and direct the children to pass the token to the next child when their turn is finished. When they get the token, they know it’s their turn. Explain this clearly to the child on the spectrum and if he jumps ahead of the line, gently remind him by asking “Do you have the token? When you get it, then it’s your turn.” Another strategy you could try is to help him pay attention to the child before him. You could say something like “This is John. Wait for John to have his turn. You go right after him.”
I would also like to add some extra information about my child:
5. Meltdowns
Without any apparent reason, the child on the autism spectrum throws his things off the table and starts having a screaming fit. The teacher is stunned. She races to him to find out what happened but doesn’t seem able to console him. In a desperate attempt, she tries everything possible to calm him down.
Children on the autism spectrum have difficulty expressing themselves. When it’s all bottled up inside, the result might be an outburst when you least expect it. While each child is different there are some commonalities that cause stress in those with autism. Environmental factors affect their sensory system and they are often unable to tune out information such as noise, smells, textures and things such as flickering lights. If the child next to him is constantly tapping his feet, it might be as simple as to move him to another table. Not knowing what lies ahead can be very stressful to a child on the autism spectrum. An overload of stress often results in a meltdown. You will be doing a great service if you write a schedule for the day and put it on the board or a flip chart that’s always in view. This strategy will benefit others too, as all kids thrive on structure. The schedule needn’t contain small details but rather give an overview of the day. An example would be:
Today is Pirate Day
9:00 Greetings
10:00 Paint a pirate
11:00 Snack
12:00 Treasure Hunt
1:00 Lunch
2:00 Splashing for Diamonds
3:00 Home time
I would also like to add some extra information about my child:
6. Can you repeat that?
“Everyone listen up! You have two minutes to finish decorating your shells. Take them to ledge to dry. Then put your left over beads in the red box and make sure you put all your crayons in the yellow box. When you’ve finished cleaning up, line up to go outside.” A few minutes later, the kids are almost done except for the autism spectrum kid who’s still sitting at the table with his shell and belongings scattered about.
Children on the autism spectrum can find it difficult to follow long verbal instructions. In addition, they typically don’t ask the instructor or a peer for clarification. This may result in the child following part of your instructions or becoming immobilized and doing nothing at all. It’s important to understand the child is not being disobedient, he simply didn’t understand what to do. Call him over to the side where there are fewer distractions and try and explain yourself in as few words as possible. An example would be to say “I need you to do four things.
1. Take your shell to the ledge
2. Put your beads in the red box
3. Put your crayons in the yellow box
4. Line up
To make sure he understood, you can ask him to repeat it by saying “You’re going to take your shell to the ledge and then…” allow him to complete the sentence. Continue by saying “and then…” Once the child has run through all four steps, say “Great. Go and do that now.”
I would also like to add some extra information about my child:
7. Social awareness
Its break time and the children are having fun. The children are playing and laughing together. They’ve made up a game and are all participating. The child on the autism spectrum child seems eager to join in but stands on the sidelines. Then he turns around, sits down and happily occupies himself, ignoring everyone around him. The aide wants to do the right thing and is faced with the decision of trying to get him to join in or allow him to remain alone.
The social world is a mystery to children on the autism spectrum. We all tend to shy away from situations we feel uncomfortable in. Kids on the autism spectrum need a lot of encouragement and assistance in social interactions. Help the child interact wherever possible. If the child needs the glue, tell him to ask another child to pass it to him. Find another kid who is kind and tolerant and pair them up whenever possible. Children on the autism spectrum have many capabilities and strengths. Find out what these are and then engage the other children for help. For example you could say “Gordon has an excellent memory and is really good at math. He can help us with things like that and we can help him learn to play Toss-Across.”
I would also like to add some extra information about my child:
8. Poor motor skills
“Snack time is over” calls out the camp counselor. “It’s time to clean up.” He scans the tables and notices that the autism spectrum child looks very frustrated. He hasn’t even started eating his snack. Walking over to him, he realizes the child is unable to open his water bottle or his sandwich container which is snapped firmly closed. “Do you need help?” he asks. The child looks at the counselor with relief as he hands him his snack.
Fine motor skills can be challenging to those on the autism spectrum. Zippers, buttons, closing and opening items, writing and tasks requiring detailed motor coordination may not be within the child’s capability. Similarly, gross motor activities requiring coordination, such as various types of sport can be difficult for a child with autism. We’re all familiar with the feeling of incompetence and it doesn’t feel good! These are the times we need gentle encouragement. Help the child feel successful by starting the action and allowing the child to complete it. As an example, you could loosen the snack container and let the child take it off. During gross motor activities such as sport, allow for some extra concessions. For example, if the kids are playing t-ball, help the child bat or allow him to run to the next base even if he strikes out.
I would also like to add some extra information about my child:
9. Attention
The teacher is reading a story to the class. The kids are enjoying it thoroughly but the child with autism isn’t paying any attention. She doesn’t want him to miss out on the story, so she calls his name and asks him to listen. He does for a moment but then continues to stare out the window. She tries to talk to him about it later but he avoids her gaze and doesn’t respond.
Children on the autism spectrum have poor attending skills but excellent attendance. That’s right. It often looks like they’re not taking anything in but nothing could be further from the truth. They typically hear everything! Never make the mistake of talking about them from across the hall. They’re bound to hear you and their feelings will be very hurt. However, when it comes to activities they’re not interested in, they often have a short attention span. They might concentrate for a few minutes and then require a break or a schedule to get back on track. It’s a good idea to break activities down into small steps if they having trouble completing a task.
I would also like to add some extra information about my child:
10. Strange Behaviors
The child on the autism spectrum flicks his fingers through the air, makes a fist and bangs his knee. He does it again and again. The camp counselor watches in fascination and wonders if she should stop him. Later she notices that he makes a strange noise every time he stands up. Then she observes that he keeps asking questions he knows the answers to. “Why does he do this?” she asks herself.
Children on the autism spectrum often have behaviors we don’t understand. The child does not do these behaviors to be disruptive, but simply because he feels a need to do them. Compare it to the compelling behavior many of us have of biting one’s nails, twirling one’s hair or cracking one’s knuckles. While we might be confused by their behavior, they are often equally confused by our rules and expectations. Children on the autism spectrum are unique and they all have different behaviors.
I would also like to add some extra information about my child:
Thank you for your dedication in helping my child this summer. My child might stand apart from other kids but just like everyone else, he wants to be loved and accepted for who he is. Your kind and caring attitude will make a big difference in his life - and mine! We are very grateful. Thank you!
- By Jene Aviram
This letter is the property of and copyright © 2003-2008 Jene Aviram of Natural Learning Concepts.
It can be accessed at http://www.nlconcepts.com/autism-summerstress.htm
For guidance on how to determine what strategies might be appropriate for your child with an ASD, you should consult the professional(s) working directly with you. I have also found the book Autism in your Classroom: A General Educator’s Guide to Students with Autism Spectrum Disorders, by Deborah Fein, Ph.D. & Michelle A. Dunn, Ph.D. to be a valuable resource. I strongly recommend it for any educator or parent concerned with educating a child with ASD.
For additional resources, including helpful books and links to other web sites, I encourage you to access my web site at www.phelanspecialedlaw.com.