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> Being a Parent of a Learning Disabled Child

Being a Parent of a Learning Disabled Child

Taken from a lecture that was given at a seminar of the Open University on 19/3/97 on the topic of Coping with Learning Disabilities: New Perspectives

By Mira Fein

It's difficult in general to be parents. It's not a topic that's taught in schools, colleges, or universities. It's difficult to be different. It's even more difficult to be a parent of a child who is different. And it's even more difficult than this to be a parent of a learning-disabled child. (Even today, I'm not at peace with this name since it doesn't reflect the whole picture of the difficulties that accompany our children, particularly when they reach adolescence, and I feel that it defines them inaccurately).

My personal connection to learning disabilities is with my son, a learning disabled boy, who's main difficulties are adaptive and functioning, and this is actually the full name of the children and adults that we treat. I see in front of my eyes a very wide spectrum, a long continuation of difficulties. Each parent has his own child and a different explanation of the concept of learning disabilities. There are parents that the term learning disabled reminds them of a child with disabilities in the academic field that cause difficulties with reading, writing, and math. Others see in front of themselves a child with fine and gross motor deficits, coordination difficulties, or an image of a disabled body. There are those who picture a hyperactive child, restless, who can't stand for one moment in the same place. Maybe what is common to all is a child with a low self-image, who always fails, and because of this is rejected by his peers. There are those who see the whole picture and those who focus more on the details, but the confusion is big and great. The more the disability can be less accurately defined, it's less clear and it becomes harder and harder to deal with.

We're actually dealing with a completely unexplained world, and from my personal experience that began 30 years ago, I can happily note that today parents have many more solutions than those who were before them.

When I first saw my child, red lights lit up with me, they signaled to me that something's not right with him. He was just quieter than other babies and even somewhat apathetic. At the hospital when I asked what's the problem with my child, they joked with me. Practically, they didn't give me any hint, any direction where to look, what's going on, what's developing, who I should turn to. I went out of the hospital very unsettled and lacking guidance.

Until then, I hadn't been in my profession a parent to a learning disabled child, I came from the field of movement. I monitored every move. I noticed that his motor development was a little slow, but he also had some sort of accompanying restlessness. Then, they didn't know about the term hyperactive child. I remember that our pediatrician told me, "If you will be calmer, then your child will be calmer". I have to admit that I was actually a calm parent, but I asked questions. I felt then that the problem was physiological and I didn't go around with feelings of guilt. It was very hard for me to convince the pediatricians who treated him over the years just to listen to me, to take seriously the information that I tried to clarify for them, that they should understand that here's a situation that they should pay attention to.

The large gaps with my son began from a very young age. I noticed that my child understood everything. The moment he started speaking, he used his first words with exact precision, even on a grammatical level, but with distorted pronunciation. When he started playing, he put together puzzles amazingly fast, but he couldn't put three blocks one on top of the other. This was already a difficult task. Of course, he was very restless; he walked around all of the time. It seemed to me that for 24 hours a day I walked around sleeping with my eyes open. There wasn't a moment without some damage, and the emergency room at every hospital already knew us, with a bruise here, and a broken bone there. When we walked together in the street, I couldn't loosen my grip on his hand even for a moment, because this moment could cost him his life.

The large gaps between his understanding and his performance were very unclear. When he was 2 ½ years old the Child Development Center in Tel-HaShomer Hospital opened. After a few tests at the center, we came back every few months for monitoring, but treatments weren't actually given. My child then started going to regular schools.

At the private preschool he attended, the teacher was very pleased when my son didn't participate in parties or end-of-year celebrations. He was a child who really didn't know the difference between his right and left hand, and he may have ruined the performance that they worked so hard to prepare. The truth is that he really did turn the wrong way; he raised his hand when others lowered theirs. I can assume that it was really hard for her after all of the effort that she invested in the presentation.

I noticed that his reactions to medications were different than expected. When I gave him by accident, as a result of constant tiredness that went with me, 30 drops of Ahiston (an insomnia medication), instead of Acemol (an over-the-counter pain medication), I was certain the he'd sleep for 30 days, but he was wide awake and didn't close his eyes more than normal at all during these days. Ritalin wasn't popular yet at that time, but if he were offered Ritalin, certainly I would have tried to receive help with anything that could have sharpened his attention and calmed his never-ending restlessness. 

When my son went to kindergarten, I heard for the first time about a special school for children with learning disabilities. You may be amazed, but I was the one who went to the Psychological Services Clinic and asked for my son to be admitted to this special school. This was the first school for the learning disabled that was established in Tel-Aviv thirty years ago by parents. I had the impression, as far as I knew my son that there was no way that he could develop and advance in a class of forty students.  When my son entered the school, he could hold a pencil only with a closed hand fist and a lot of effort. In order to teach him how to properly hold the pencil we had to work with him for a very long time. Understandably, there were several other difficulties that came along with this: gross and fine motor movements, coordination, and disabled body image. All of these things went with him constantly.

I would like to deviate now from the accepted consensus in recent years, that is to refrain from sending children to special schools because of the stigma and insult of special education, because if I will tell you frankly what happened, the I would tell you that when my son learned in a special education school, not only could he not hold a pencil, but we had to write for him in math four boxes on the page in order to help him orientate himself and write the numbers in the correct place.

Our son finished in a regular elementary school and high school, one of the most competitive high schools in the city, with graduation credits in two foreign languages. I'm certain that he couldn't of reached this accomplishment if he hadn't made his first progress in a special education school where there was an individual program for each student of the eight students that were in his class.

He learned for two years there, receiving the foundation from which he could continue to advance forward. I remember when I first brought him to school, I entered the class and saw students sitting, and I told the teacher that I don't expect anything in this stage; I only want him to sit in one place for a few minutes, that's it. And the truth is that I didn't believe he would learn to sit in one place for a few minutes ever, but it happened. After two or three months, my son read even without vowels. The principal claimed that it couldn't be and that he must be reading by heart. She said that it's not possible that he reads. I told her that "he may learn partly by heart but nevertheless he continues to read freely". In other words, there wasn't a problem of dyslexia, but there were disabilities that were very complicated.

The school worked with him for two years on his specific difficulties. I think this was something for everyone to be proud of that he took the first steps in his education in a special school for learning disabled. Only in this setting could he receive the solid foundation for his impressive accomplishments that he had in regular schools afterwards. I, in any case, didn't wage any wars. I was a strange bird at the Psychological Services Clinic. I actually requested this school as opposed to other parents who fought against their children being sent there. I saw after two years that my son advanced nicely and then they opened the first "integrated (inclusion) classrooms" in Tel-Aviv and my son moved into a class like this. This was a great accomplishment in my eyes. He began to enter into subjects that he was strong in. He wasn't included in drawing, art, and exercise classes, but he fit in well in the main subjects.

When he reached middle school and entered a school where they learned two foreign languages, both French and English, they told me from the beginning that they would waive his obligation to learn French since without this he wouldn't be accepted to the high school. I agreed; I have to say that I invested a lot in preparing the foundation for cooperation with the school. I would come to parents' meetings, to share with the teachers, to the counselor to highlight his capabilities, to request to pay less attention to the way he gets organized and more to the knowledge he's acquired. Throughout those years, my afternoon hours were set aside for one purpose, to help my son advance.  The issue of getting organized was very weak with him and it's still weak today.

He was very distractible. Whenever he left the room where we were sitting he always forgot to come back. His thoughts were always distracted. At one of the lectures of Professor Malka Margalit at the university when we were sitting in class, there was a demonstration outside and a lot of noise. We recommended closing the windows, but Malka told us, "Sit now with the windows open and try to think what's happening to a learning disabled boy who's overwhelmed with stimulations from every direction, when he has to pick out what is the main focus and what is less important." I always tried to neutralize what wasn't relevant and to stress the important and to be helpful for him.

At the end of 7th grade, the French teacher recommended to me to give extra learning to my son in French since he showed better than expected ability, and in fact, my boy who was in the third (the lowest) group in French just so he would feel apart of the school that taught this language, joined the class in 8th grade that learned French the whole year. He did this, grasping the language, and moved along with the class. But there were still a lot of difficulties that stuck with him. Actually, I helped him develop his intellectual ability that was evident from early childhood.

I can say that in other areas, of day-to-day functioning, and social adjustment he advanced much less. I knew we had reached a great achievement when my son passed the graduation (bagrut) exams, when only two of them he did orally. I was helped a lot by private teachers in the last two years of his studies, but I knew a diploma at the end of high school was not the end of the journey.

My son was rejected by the army, so we had to get re-organized. Like every parent of a learning disabled child, in every transition period the child wonders again what will be in the future. I had a feeling that in the end of those long years that we invested in them so much energy, so many resources, that we were moving backwards. We had to come to our senses, we had to look and to find, maybe to invent, additional settings, new solutions, that weren't available in the field, in order to continue to take advantage in a positive way our of our son's potential to rise forward and not to cut him off in the middle. We had to give him a lot of strength to overcome the fact that he was still different, that he was rejected from the army after he had practically from his perspective fulfilled all of the requirements of the regular society, he finished a regular, competitive high school, and all of a sudden he was left out, remained without any friends, we had to build our world from new.

I have to say, that throughout the years he put in a lot of effort to fit in amongst his peers. There were lots of difficulties, he lives in a big house, amongst 50 apartments with very close groups of friends, and sometimes quite mean, he suffered a lot of abuse because of his being different, and nevertheless he did everything in his ability in order to be a part. He bought their favor of the children by inviting them to our house to play his television games, but he still remained on the side. But it was important for him to be accepted, and he was willing to pay the price.

The motto that accompanies me immediately is the song of A. Hillel "Yossi, My Successful Boy". Yossi is his mother's successful boy, and if we will all know as parents, to come to terms with what's lacking and to project to our child the positive messages, the support and encouragement, if we will succeed in seeing and feeling the innocence, the energy to want, to bring us happiness, the joy a child like this causes us, despite all of the difficulties, we will succeed in making a warm and encouraging environment for him and we'll accompany him every day, every hour, his progress and his chances to merit a more beautiful world.

But first and foremost he will always remain in our eyes, our successful man.

Taken from "To Be Like Everyone", Nitzan Newsletter, No. 16, May 1999