Saturday, March 16, 2013

Advocating, not neglecting

So....... I recognize that my last post was a little more than 4 months ago.
I of course, let life surround me with the usual chaos that often occurs when your world revolves around your children.

My oldest (5th grade) needed me. He needed me to advocate. He needed me to reassure. He needed me to ease his anxiety, to assist in helping others understand his different way of thinking and processing.
"They" were calling it bad behavior.
We Call it a lack of social skills and anxiety in unstructured settings with staff that doesn't quite get it.
 His doctors call it a disability.

The school doesn't have the resources for the majority of children with high functioning Autism. They have self contained programs for low functioning, mainly non verbal students.... They have classroom settings referred to as the Behavior Disorder rooms for the disruptive children, but, There is nothing for the social skill lacking, sensory sensitive, routine structured, literal child.

When a child has some difficulties managing in a general education setting ( you know, a bustling classroom with 1 teacher for 30 students, constant noise and distractions) the immediate turn is bad behavior. It's sad really. My sons IEP is written under "other health impairment" because he doesn't meet the Federal education guidelines as autistic.

NEWS FLASH## he doesn't fit anything.
It's time to get real. It's time to change. It's time to adapt, accept and understand.

The schools need to listen. My son won't be the last child with his variety. He most likely isn't even the first child. But I am the first parent that they wish would go away. I am sure of it.

In my recent go rounds (almost daily) with my sons school, I discovered an article. It's a bit lengthy, but boy, it is so nice to have something like this that spells out exactly what I've been saying to the schools. It validated everything. I know I am not alone in this. It's okay to stand up and advocate. The squeaky wheel gets the oil and when translated into terms for your children, it's a win win.


Building Strong Supports in School 

Structure, predictability, and consistency of approach. Many children on the spectrum become overwhelmed very easily. You want to evaluate the sensory, academic and instructional demands in the classroom. Try to make sure that noise level is low, lighting is not too bright, and that academic demands are tailored to the learning style of the student. Try to keep a written or visual (picture) schedule for the day, and try to stay with a consistent schedule each day. The more concrete, visual, and predictable the daily routine the lesser the anxiety. "Uncertainty" is a major enemy of children with ASD.

Kids with ASD can be very "rule" bound. They interpret things "literally" and will follow things "literally." Post written rules and expectations and review them frequently. LOL...just make sure you stay true to them. They will remind you.

Be very careful of the social demands within the classroom. They have difficulty interacting in group situation, especially reading the fast pace interactions among several people at one time. Invite, but do not push too hard, and then support them in group activities. They will have trouble reading the unwritten rules of relating with others. They have trouble reading the thoughts, feelings, and perspective of others. They have difficulty "fitting in." Try not to push them, but rather invite them into interacting. Children with on the spectrum can be very different in desire to interact. They tend to either be indifferent or uninterested and need coaxing, or they are very social and very verbal, but do not know when to stop. The very social ones, will often interrupt, talk nonstop about their topic of interest, dominate a conversation, and overwhelm other children. They do not know how their behavior is effecting others. They will need a lot of coaching.

Focus on their strengths and interests. Kids on the spectrum often have good awareness of detail, and have one or two very strong interests. They can have very good memory for facts and detail, but not catch the "gist" of things. Identify what their strengths and interests are and try to build them into the lessons. Like any child, if you build on their strengths, and help support their weaknesses, they will develop.

Expect that they will have organizational problems very similar to ADD. Break tasks down into manageable steps, and give them a lot of visual cues. Set up organizers, color code things, help them put their backpack together at the end of the day, and remind them to give you their homework at beginning of the day. Try to give main instructions with written notes for them to refer back to when needed. Start where they are competent and build gradually.

DON"T ASSUME. Just because they are very verbal doesn't mean they understand. Also, because they are very literal, they often do not understand our multiple-meaning, vague language. Don't assume they know. Be very careful to explain things very literally for them, and have them repeat it back to you. Be careful to "clarify" and "verify" everything. If the child "does wrong" they probably "misinterpret" the expectations. Look at how it was presented and how it was interrupted. Do not assume the child purposely is "doing it wrong." Rarely is this the case. It is usually more "our fault" not theirs. However, do not expect to anticipate all problems, you cannot be that good.

The children are often very black and white, all or nothing in their thinking. The stronger the anxiety, the more rigid and inflexible the thinking. They can get upset with vague rules and behavior, and get very anxious which can be displayed in obsessive/compulsive behavior, or oppositional/defiant behavior. When highly anxious they can be very perfectionistic and unrealistic in their own performance and that of others. They can have a strong fear of being wrong, and need to make sure that they have competed it right.

Peer awareness is important. The better understanding the other kids have of the child, the better they can support them. There are some good videos and kids books out for explaining autism/aspergers. Some schools use video tapes to teach staff and peers about autism. Develop peer supports to help the child navigate the social life. Supportive peers can sometimes be the best teachers. Watch very carefully for other children teasing and bullying the child.

Often the hardest times during the school day will be the unstructured times, such as lunch, recess, between classes in the hall, locker room before gym, etc. These transition times can be very difficult for them to regulate. When aids are not available, peer supports can really help out.

For many children with anxiety, stress chemicals will accumulate throughout the day. Give them frequent breaks during the school day to rebound and collect themselves. Also give them "break" cards that they can hand to you if they need to "get out of there" and rebound. I would also ask for an Occupational Therapist to evaluate and give them sensory diets to help calm and organize their nervous system.

Each child is different, but assume that the everyday demands of school can be very overwhelming for the child. Whether they tell you or not, their behavior will tell you how they are doing. Communicate that they are safe and accepted in your classroom, and provide proactive support. Become a :"working partner' with them, and most importantly be flexible. Once they read that in you, they will use you for support and feel safe in your classroom.

Anxiety can be expressed in different ways. Some children with melt down and act out. Some children will "shut down" or "tune out." They are just as overwhelmed and anxious. Some children use a very "oppositional" coping strategy. They often argue, or resist much of what is going on. "They will say "something is stupid, or boring," when they feel insecure and incompetent.

Because these child often go undiagnosed, they can appear "lazy", "oppositional", or "poor attitude." Because they often have good verbal skills, the social and emotional issues are often more hidden. These children are not "manipulative and oppositional" by nature, only as a way of coping with uncertainty. Just always remind yourself, as the child becomes oppositional or defiant, realize he is feeling more insecure and anxious.

For the children who become overwhelmed and "melt down", do not scold or punish. Do not become controlling or demanding. When they are melting down, they lose coping skills and self control. Back off demands, lower the stimulation, and lower your voice. Offer assistance, but be aware that many child need to be left completely along to rebound. We often develop "safe areas" for the child to escape too in order to rebound. Communicate that they are safe and accepted with you. Respect their need to back away.

BE PROACTIVE RATHER THAN REACTIVE. Provide strong proactive supports to minimize stress and build adaptive skills, rather then "punishing" problem behavior. This doesn't mean letting them get away with things. You can provide consequences for behavior, but focus heavily on identifying "why" the problems are occurring and building in supports to minimize the behavior.

When assessing the safety factors at school I look closely at the physical surroundings of the classroom (sensory issues, physical layout of the classroom, seating arrangement, etc.), the instructional strategies that the teacher uses, the task performance demands, and the social interaction patterns with teachers and peers.

When looking at how to create a supportive school environment for your child, consider the following:

1. Look to see if there are any sensory problems in the classroom (too many children, too much noise, too much distracting activities, etc.). Look to see if where he sits is a factor for him. Does he need to sit closer to the teacher, away from windows, are other kids sitting too close to him, etc. 

2. Children on the spectrum need strong organization to the classroom and schedule. They require strong predictability to their routine. The teacher should provide the class (or him) with a picture schedule, and go over it at the beginning and middle of the day. The teacher should review the schedule frequently, and prepare him ahead of time for transitions and changes. Also, use visual cues and visual instructions to what he needs to do.

3. Remind the teachers to be very specific, very literal with their language. Don't assume that the child understands what is expected. They need to clarify information, and verify that he understands it (ask him to repeat it back). Provide instructions in visual form, (pictures, written words, etc.).

4. Transitions between activities (ending one activity and starting another), especially if it means ending a preferred activity and going to a nonpreferred activity, can be difficult for the kids. The children usually do better when they know what activity will following the current one, and then prepare them for the transition by giving a couple of warnings before transitioning (in 3 minutes we will be cleaning up and doing ___, then one minute warning, etc.).

5. Watch closely the interaction patterns with the staff. How do they support your child, what types of teaching strategies do they use, and how do they prompt your son to do things? Do they help him out when he is struggling, do they focus on his strengths, and support him early when he is struggling, etc? Does he feel accepted and supported by the way they assist him. If he gets overwhelmed and acts out, how do they support him at the time. Do they assist him to calm (e.g. back off demands, allowed to retreat to safe area, use calming strategies), or do they demand and command. Try to guide them in what techniques work best to lessen the overload, as well as calm your son when overwhelmed. If needed ask the Occupational Therapist to design a sensory diet to help your child stay calm and organized during the school day, and ask for a “functional behavior assessment” if your child is having behavior issues at school. Ask to be part of the team that will be assessing and designing any behavior strategies. You have a right to be part of all decision making.

6. Also take a look at how the child interacts with the other children. This is often their biggest anxiety. Try to get the teachers/staff to support him during social, group activities. He will need help learning how to coordinate interaction with the other kids. He will not be aware of the reactions other children have to his behavior. He will not pick up on the cues other children give him, and will not be aware of the thoughts, feelings, and perspectives of the other children. Teachers need to help guide him in social interaction.

7. Take a close look at how the work is presented. Kids with autism/aspergers often need the work to be broken down into smaller parts, given to them one at a time, and given more time to complete their work. A good rule of thumb is giving "half the work, in twice as much time." Also, many children need help getting started (even if they know what to do). The teacher might want to try assisting him through the first part to get him started, and then return again midway through to reinforce working and jump start if needed.

8. Make sure the child knows how to ask for help and how to appropriately ask to get out of doing something. Even if the child is very verbal, they often do not know (or feel safe) asking for help. The child also might act out to escape a task he doesn't want to do (or feels comfortable doing). Sometimes by raising their hand for help, and given a "break card" to use when they need to take a break from the classroom, the children do much better.

10. Regardless of how bright your son is, he will find many of the normal daily demands of the classroom more stressful then the other children. Making his way through the normal interactions with other children and teachers will take ongoing conscious effort on his part. Much of what other children process subconsciously, with little effort, will require a lot of conscious effort from your son. Because of this, he will become overloaded very easily. He may need periodic breaks to rebound throughout the day; chance to escape from the classroom demands and engage in an activity that calms and organizes him.

11. Pay close attention to the unstructured times (lunch, recess, rest periods, etc.) and group activities that require more relating with the other children. They are often lost in these activities, which will lead to them acting out to control them.

12. Make a list of your son's strengths and interests, his fears and sensitivities, and what helps him feel safe, accepted and competent. This helps teachers know the child better. The staff should focus heavily on his strengths, help compensate for his weaknesses, and adapt for his fears/sensitivities. At all times, focus your attention on what you wanted him to do, and minimize attention on what he is doing wrong.

Helping the child feel “safe, accepted, and competent” at school takes many changes in the physical setting, task demands, teaching strategies, and ways of interacting with the child. Sometimes it takes a few years to isolate, analyze, and create the needed changes to make school successful




1 comment:

  1. Well written - Thanks for sharing.

    Schools just aren't prepared for the waves that will be coming to them. My son was diagnosed with moderate Autism and ADHD at 2 yrs of age. He was later diagnosed further with cerebral palsy (mild) and he is hearing impaired. He is, however, a very high functioning kid with autism and a sweet boy in general. This in mind, I went round and round with his public school teacher who, in one meeting with his LRE person, SpEd teacher, and the principal told me that I needed to understand that she was powerless to stop the other kids bullying him because "[your] son can be aggravating" and that she'd never dealt with a child like Joshua. I told her that he might have been her first child like this, but he will not be her last. We pulled him from public school and put him in a smaller charter school and have been much more successful.

    I have always felt horrible for the kids that I have known who are on the Spectrum, but don't "qualify" for services.We are the fortunate ones that do qualify, but my son's symptoms are probably no more or less than yours or his friends that are either PDD-NOS or Aspergers, and yet they don't get the benefit of assitive service or therapies unless they basically bankrupt their parents paying for it out of pocket.

    I pray that the system gets changed, your sons are just as deserving of help and attention and understanding as anyone else.

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