In Response to Parent Query: Equal does not mean the same

First let me address the particular expectation with regard to the seating arrangements. 

Seating is an important aspect of classroom management to make the students “available” for learning. Just because a student is present in class doesn’t make him/her available to learn academic or social skills. There may be several reasons for this. In my links to the OT posts there is some wonderful information about how optimal sensory motor integration impacts a child’s ability to attend, follow directions, complete the task on time, etc. 

In some children we may see behavioral symptoms—talking out of turn, distracting others, being goofy or defiant, being unresponsive and withdrawn, etc. Some of these may be because the students have been given the opportunity (who can resist chit chatting if the teacher doesn’t set boundaries?) and others because of poorly developed inhibition. In some students, lack of inhibition is an acquired behavior (because parents or caregivers don’t set boundaries or dues to inconsistencies in the follow up). In others it is because of a learning disability.

Quite often, teachers start with one kind of seating at the beginning of the year. This changes as they get to know the students and make observations on their social interactions and learning needs. As they get a better understanding of their students’ needs, teachers change the seating arrangement. Some teachers don’t assign seats because they feel that their students can learn to be more independent.

Sometimes, teachers set up the classroom for their needs—to make it easy for them to teach. But the key is to keep the students’ needs in mind—whichever arrangement fosters students’ learning is the best arrangement for that student body. Now, in a classroom of forty one it is impossible to find the setup which works for all. This is where individualization comes in. 

If we take any random sample of students (of the same age) their skills will fall under a range. It is up to the teachers to keep track of their strengths and weaknesses and adapt the environment, materials, and instruction. This is the case in a regular education classroom, given ideal conditions. In our schools, teachers are forced (due to various reasons) to try the ‘one size fits all’ for almost all instruction—social and academic. When you add a child with a disability, (especially a disability without an obvious ‘physical’ component) it results in conflicts in philosophy and methodology.

In this particular instance this can be resolved by understanding one significant aspect of PDD—difficulty in adapting to change. The teacher’s reasoning is that by holding your son to the same expectations she is providing him with an opportunity to grow (thereby treating him as an equal to his typical peers). The confusion here is because of the assumption that equal means the same. But that is not true, is it?

If your son changed seats every day and completed his classwork on time prior to this, then he stepped out of his comfort zone each and every day! That was a lot to ask of him, given his diagnosis—much more than what his typical peers were asked to do. When you discuss this with him, do let him know that he took a big step forward in adapting to these changes. 

Next, your son told the teacher he couldn’t see the blackboard. No child should be asked to sit at a place where he/she can’t see the board. There is no other alternative. There is more to being able to see the blackboard than visual acuity. Visual perception may also need nearer seating. (By the way, I don’t know if your son wears glasses. If he doesn’t this is the perfect opportunity to go for a vision screening.)

Last, change induces a lot of anxiety in children with PDD. This anxiety can manifest itself as different behaviors. It is human nature to pay attention to the child who exhibits attention seeking behaviors as compared to a quieter or shy student. As teachers we have to remind ourselves constantly to pay close attention to the needs of these students. I think your son did a great job advocating for himself by informing his teacher that he couldn’t see the board. Good for him.

Some questions related to this issue:

• Does the teacher have access to information on PDD?
• Can your son use one of those micro-cassette players to record the teacher’s lesson? That will help you transcribe the lesson after he comes home (given the fact that his classmates don’t want to share their notes).
• Does the teacher give the class extra five minutes at the end of the lesson for them to catch up? A lot of teachers do that:)

I will reply to the other questions in the next post.

Ms. S

Query From a Parent

A very interesting and pertinent question waited for me in my inbox. The parent and I tried to post it as a comment to my earlier post on inclusion but it was too long. We wanted it to have a wider audience and so, here is the message in it's entirety. I will address the questions separately.

My son is in 4th class (I.C.S.E).  This year's teacher dictates  the notes at times and sometimes she writes on the board. Even the instructions given is not clear and specific hence my son is finding it difficult to follow the instructions of the teacher. He used to sit in first bench all these years but now in 4th std his new class teacher has started a rotation system of sitting—everyday she changes the place of students but with same neighbouring friends. Only their place changes but not friends.

Yesterday the class teacher made my son sit in the last bench and he had a tough time completing his class work. He could not see the board properly, and understanding  instructions of the teachers by reading between the lines also was difficult. He could not complete his c.w and it was a mess. When he told his teacher that he could not see the board the teacher said that he needs to manage it for a day, as his place of sitting is  going to change tomorrow.
 
Prior to this above incidence  I spoke to his class teacher just to get to know her and to make her aware of  my son's needs. She said that I should not be analytical, nor judgmental, and forget about his problem and stop over- protecting him.

Do you think what the teacher is saying is correct?

I told her  treating a child like any other child is good but it is necessary to adapt to his problems . You cannot neglect his problems and expect the child to perform like any other child in his class. Her reaction has created lot of queries in my mind and right now I am in a total state of confusion.
 
I really need somebody to give correct answers to  my queries and I felt you are the right person hence forwarding my queries:-

Can a mental barrier in a child be overcome just by keeping him in a normal or inclusive environment without intervention?

As per the teachers school of thought they  are giving him opportunities to grow like any other child by overlooking his special needs and making him do things outside his comfort zone. According to them I, as a mother, am to be blamed for being over worried, analytical and over protective about him.

Do you feel their allegations against me is correct? I feel as a mother I am being critical or analytical about my child only to improve him further and not to put him down. I am his mother and I love him very  much. How on earth would I not want my child to progress in life? And as  a mother, I don't  love my son blindly—I have always being unbiased and not pampered him too much though he is my only child. I have been a strict mother to him also whenever it is required.

I told the class teacher that I explain him each and everything that is taught in class only after ensuring that he has really not understood the chapter. I only substitute whatever is missing. The teacher felt that I was analytical and judging the child. I felt that her allegations are based on the fact that academically the child is performing very well but her mother is a nagging type who complains about the child simply. My son is performing very well in academics for the last four years because of the hard efforts taken by his mother at home giving him full  attention. The teacher can't give so much personal attention to a single child amidst the 41 children in class.
 

Being a competitive world, nowadays his school friends also give us excuses for not wanting to share their notes or help him. We are managing with great difficulty .
 
One school of  thought says that a child with mental deficits need to be kept in an inclusive environment without intervention and made to do things like any other child, so that we can break the mental barrier, or make him come out of his comfort zone and do things like any other NT child.
 
The other school of thought (which is my thought too) says that a child should definitely be in an inclusive environment but he needs to be given the required help or his work needs to be adapted to boost his self - confidence. This will  make him come out of his comfort zone in a balanced way without taxing him mentally too much.
 
Which school of thought do you agree and why?
 
Do clear my confusion.

A Parent.

Sensory Integration/Occupational Therapy...What is that?

If I could get a paisa for each time I am asked that question I'd be rich by now! Yes, I did mean a paisa and not a penny;)

Sometime back I posted a link to one of Loren Shlaes' articles in Minds in Bloom. Here is the link to all her posts in the Advice from the OT Series.

Irrespective of whether your child has a need or not, do spend some to read all the six posts. The last post particularly explains sensory integration and how a deficit in this are impacts day to day functioning and a how you can help your child.

Ms. S

Acceptance is the First Step

I realize that I repeat myself a lot--sometimes with the same set of parents and teachers. Once, I spoke to a parent about her child for over two hours. By the time the conversation ended we had planned out a series of steps to address her child's needs. I gave her resources to read, professionals to call and information on local parent support groups. I felt that we had been productive. 

Exactly a year later, I received an invite from both parents. "Would you please come over for dinner? We'd like to spend some time with you to talk about our child. We have had reports from the school about behavioral problems..." As we talked some more I realized that they had chosen not to follow through with any of the steps we had set up. The child was a year older and the issues were firmly entrenched. So we went through the whole set up again...I didn't have anything new to say. I reminded them gently that if their child was tested, it would shed some light on what she needed. If they disagreed with the result they could always reject it.

This was a year ago...the mom just called again because the school was very concerned and would not be able to support the child as things were. What was she to do?

About two months ago, I spent considerable time with another mom...detailed mails full of questions and answers. She'd get so excited at some of my questions...'That's exactly what happens! How did you know that?" etc. It ended the same way...at the end she said, she had to think about it because everyone around her said "Your child will grow out of it. You are over reacting." and of course, the ubiquitous "Every child is unique."


Recently my former coworker forwarded a newspaper clipping about a former student of mine. The parents moved across the country to be able to send the child to that school. At the end of the year review, the parents were asked to get certain evaluations done because there was a gap between the child's potential and progress. They thought about it and decided that they didn't want the evaluation. The child moved to a different school. A few years later I found out that the child moved every two years to a different program. After 6 years, the parents were now looking at the recommendation made by the team of professionals in my former workplace.

It is the parents' prerogative to decide whether they want to find out what is going on with their child, the right way to help and who will provide the services. Professionals see so many children that they can pick up on patterns that others may not. They offer suggestions based on their roles. This freedom of choice exists up to a point...mostly when the child is very young. As the child grows older other factors take over and parents are forced to take action.

When someone recommends a course of action involving evaluations and therapy, it is not because they are finding fault with your child. It is because there is something which prevents your child from reaching his or her full potential. If you address the needs at a young age, then the gap between your child and a typically developing peer can be bridged or minimized.

When you accept that your child has some learning or behavioral needs (and is still perfect in your eyes) you are preparing your child for the future. It takes a lot of courage.

Ms. S

The Power of Inclusion

“My friend, a special ed. teacher, wonders how the new program will work out. The authorities have decided to shut down special schools and enroll the students in regular schools…teachers are stressed, parents are worried and I can only speculate about the students’ feelings. As a mother of a regular ed. student and as a friend of parents with children who have extra needs, I am a bit confused. I am trying to negotiate the line between what is right for both these children in the short term and long term,” a parent expressed her concerns.

The following week, another parent shared his misgivings. “My children went to an inclusive school. They were able to assimilate better with children who had physical disabilities. When it came to children with cognitive needs or behavioral needs, they found it difficult. The teachers and the administrative staff were very empathetic but I was concerned about how much time was spent on the children with these issues. I felt that other children were left to fend on their own. But these are just children and they don’t yet have the skills to understand or deal with the complex emotions these interactions aroused. I want to be empathetic and I want my children to learn these skills. What we need is a better system where the give and take is equitable.”

I felt that the parents were honest in their misgivings given the manner in which the process was initiated and maintained in their children's schools.

Last week I had a chance to observe a young child with intellectual disabilities at play with his typical peers. He was a very endearing child but you could see some behavioral challenges, albeit very mild. His peers were a bit upset but they managed to set it aside and continue to play with him. They were his classmates and the parents spent considerable time together. Having spent so much time together they understood that he needed a bit of a leeway. But more than that would have been a burden on them—they too were very young. 

Inclusion is a powerful tool. And like all powerful tools, you have to have a clear understanding of how to use it. Sentiment is a wonderful thing but it isn’t enough when you encounter obstacles. Otherwise parents and educators are going to give up on it too soon.

Administrators have a responsibility to expand their teachers’ training beyond the philosophy and the feel good nature of inclusion. The teacher has to have assistance in the classroom; have a thorough understanding of classroom management and behavior management. The school as a whole should follow a behavior management program so that there is continuity from class to class. 

In one of the schools I worked, we had discussions on the restrictions certain disabilities imposed on the child. It helped the other students understand some of the limitations in a matter of fact manner. When there was a particular difficulty in social interactions, we had discussions (yes, even young children can benefit from this). This taught the children to express their points of view without playing the blame game. When the students and parents realize that there are expectations and consequences for all, everyone pitches in to make it work. In some instances we also worked to help them understand that being equal does not mean having the same consequences or choices.

It is a lot of work…we might as well do it correctly. So dear reader, irrespective of your role as an administrator, teacher, or parent of a child with/without a disability…do your homework. 

Ms. S

Mehdi Hassan versus Sheila & Munni

I spend my time preparing for the upcoming workshop listening to Mehdi Hassan and invariably land on this rendition of his Rafta Rafta from the movie Zeenat.

The 1 dislike out of 35,060 views caught my eye and I did wonder at that.  But one comment put it in perspective for me...

"The 1 dislike is by a relative of Sheila and Munni."

APT!

RIP Mehdi Hassan Saab.

Ms.S

Meeting Children's Needs Part 2

If you are a parent of a child with disability and live in India…don’t get dejected. It is tough yes, but we are moving forward. It is happening in patches, some locations offer better services than others and some services are offered by quacks. This is no different than other countries.

You may wonder why it your lot to butt your head against the school, society or family. Your fight will help someone else who’ll follow your path ten years down the road. This is not a curse or a premonition—just an acceptance of reality.

What can you do to help this process?

Make your child visible. If your neighbors don’t know about your child then you can’t expect them to understand the adaptations required in your immediate environment.

Take your child out to where the neighborhood children play. Children will ask honest questions but they will accept your answers and be more open to suggestions on how to include your child in play. If they play for 1 hour, don’t expect them accommodate your child for the entire hour—at least not initially. Start with smaller installments and gradually work your way through. This is not just about social acceptance of your child or social skills development in your child. These children will grow up to become policy makers—in private industry, in the government, in society. You are molding the minds of these policy makers and developing their understanding of your child's needs.

Answer others' questions about your child's disability. That will help others see your child's needs as do-able and will pass on the information to other parents. Most of my referrals from rural areas start with the comment, "My friend/relative heard from a parent (of a child with a disability just like mine) that we can do something for her..." One word of caution—if you get excessively emotional people will listen to you for the first few times. But after that they tend to back off. It is not that they are being intentionally rude to you—it is just human nature to want to discuss other things.

Present your child in a positive light. Begin by discussing what he/she can do. This brings your child’s potential into focus.

Do not allow anyone to patronize you or your child by saying that they have sacrificed their lives to provide service to ‘these kinds of children.’ By accepting that it is a sacrifice to work with your child, you have accepted that your child is below par in some manner. Any one in this field should enjoy their job because it offers opportunities for creative thinking and social interdependence/competence. “Say No to Flowery Language” about your child with a disability.

“They are God’s children” is another patronizing comment. It focuses on the commentator’s need for recognition of his/her goodness and Godliness. Whether you believe in God or not, you should believe that all children should have equal rights and benefits. Equal doesn’t mean the same, so there is room for individualization. I may have written about this earlier…one young mom from a devout Muslim family complained about how every professional she met said, “Don’t get disheartened. These are God’s children. You have been entrusted with their care…blah, blah.” “I am not disheartened and I know that God has given me these children…I maybe sad to see them in pain but I am never sad that they are my children. I find it patronizing that they assume I need to be counseled about God’s plan for me!”

Don’t allow comments linking your ‘Karma’ and your child’s disability go unquestioned. They may argue that it is a matter of individual belief but no one has the right to say that you or your child, deserve disrespect, pain or difficulties, due to a disability.

Most important of all, enjoy your child. That opens minds like nothing else can.

Ms. S

Meeting Children's Needs

My fellow shopper was so happy when her young son with Asperger’s called from the behavioral clinic. A few months back she had had to call 911 when she couldn’t calm one of his aggressive bouts. We stood there for 45 minutes while she expressed her frustrations with the school district, how well this behavioral clinic addressed the essential conflict resolution/social skills, and her future plans for her child.

“One of the store owners said to me that he would have moved away to a different school district. Maybe that is their thought process...just keep ignoring her and she'll eventually go away. Well, I won’t! I’ll stay right here and fight for my child’s needs. Maybe the next parent who takes on the system will have it better because they’ll learn from me. I have every right to live here and expect my child to receive the services he needs,” she ended.

This was in one of the small but expensive suburban neighborhood not too far from some of the leading schools of education in the country.

I returned to Germany a few months later. At a gathering with friends I met another parent. She asked me several questions and then turned to her neighbor, “See, you can tell the difference,” and went into a fast stream of German. My friend translated it for me. “There is a difference in how the child is seen and talked about in the different school systems. My child’s teachers are kind but she is treated as someone to be kind to, but not as someone with potential. If I question them they look aghast—as if I am expecting too much from a porcelain doll. Well, my daughter is not a porcelain doll—she is a human being with potential, expectations for herself and a disability…”

Then I met an acquaintance in India who was complaining about how difficult it was to get necessary services for her son. Another parent from her son's school left for another country. Her child has access to so much more in the new location. A week later my acquaintance met another parent (of  a child with a disability) from a very rural part of the country. It made her take a second look at the services her child has...she is ready to take on her joint family, therapists and teachers with renewed fervor.

The first two parents had one less worry—services were provided for by the local government body. That was a significant benefit that the Indian parents could not claim. But there was another important point here—

Education and how it is provided is a work in progress, no matter where we live. Every where parents are working hard to make their system offer better services. What do they find?

The services may be funded by tax payer’s money, schools of education may have come up with some of the most advanced techniques and strategies, there may be no need to worry about what will happen to your child when you are no longer around…the quality and types of services you and your child get, are dependent on the people who work with your child, and their beliefs.

•  Do they see your child as an individual worthy of respect?
• What do they see first-the individual (and all the inherent potential) or the disability?
• Do they believe that the individual has the right to access services, information and opportunities just as any other child?
• Do they offer these because it is your child’s right, because of legal requirements, or is it because they do your child a favor out of the goodness of their heart?

To be continued...