Sunday, 04 September 2011
As we prepare to start a new school year, I am continually grateful for the district we found which enables my son to learn in an inclusive classroom. He has become a fabulous student, despite continuing issues with expressive language. He is a beautiful writer and can read and do math at grade level.Still even here there are challenges. Here is one we dealt with last year.
His teachers tell me most of the time he is quiet in class, and until last year we accepted this without question. In the middle of third grade Benny began to complain in the mornings before school. After three years of happiness he said he did not want to go to school. All reports pointed to great progress and it took me a few weeks to get to the root of his despair. One morning with tears streaking down his cheeks he told me he is sad because he never can answer any questions in class. He went on to question why his teachers say such good things about him when he does not ever answer a question. Now sobbing he added that he does not answer because he does not know the words.
Suddenly I realized that he needed more. He wanted to participate and was frustrated because his expressive language difficulties made this impossible.
I went right into school and asked to meet with the school psychologist and the speech therapist and together we came up with a relatively simple plan: We decided that in his speech sessions he would research topics related to those his class was learning about in school. For example they were studying Kenya at the time, so Benny made a poster with pictures of the people, the animals and the landscape. He then wrote down descriptions of the pictures and practiced reading them to his small speech group. When he was ready his teacher gave him a few minutes to share his poster with the class. He was on cloud nine.
Once we saw how much he enjoyed the limelight, a surprise for us all, I realized that he needed more opportunities to talk in a way that made him comfortable. His school has a club called Junior announcers, where students take turns giving the morning and the afternoon announcements over the PA system. I asked Benny if he would like to do this. He smiled. We arranged for him to join and a few weeks later he was up there with the microphone. I stayed for the first announcement and to hear his voice, clear and strong, circulating throughout the school was one of the greatest moments of my life- one akin to his very birth, 9 years ago.
He went back to his classroom to a standing ovation and then a student directed line up in order that each and every student could give him a high five.
The moral behind this story- never settle, never assume that your child would not want a certain kind of attention. If your child is sad, there is a reason behind the sadness. As your child grows, his needs will change, and it is your job as a parent to find out what they are and then to make the necessary changes happen.
As we begin fourth grade I wait to see and hear what he will need and I hope I will have the ingenuity and patience to find a way for him to achieve all the goals he has for himself. The IEP is a guide for the school, your child should be the guide for you. Best of luck to all.
Thursday, 21 July 2011
One would think that the quirks of a child on the spectrum would stand out more when he is amongst typical peers. That was one of my fears as I planned our move to an inclusive district. I quickly learned though that his behavior which looks troublesome when put under a microscope by professionals and special educators is often accepted more readily by those who are not looking to "fix" him. While taken together all his idiosyncrasies led to a diagnoses of PDD-NOS, individually they often blend in with the general neuroses of our time. I offer two examples:
Benny is obsessed with hair. He still falls asleep twirling either his or mine and rarely a day goes by when he does not remove my scrunchie and borrow his hands in my curly messy locks. One day, about a year ago, I saw him stroking the hair of a girl from his class, after school. She did not object, but I remembered conversations I had with previous therapists about the importance of good social skills, boundaries, personal space and so on. When I saw this girl's mother looking on I became agitated. I went up to the mother who was engrossed in the exchange between my son and her daughter and offered something between an apology and an explanation. She laughed and told me she thought it was fine, and that actually she and her sister both have a bit of an obsession with hair, especially each others. She continued to chuckle as she told me how she and her sister, both happily married, find themselves quite unconsciously stroking each others hair in public, to the point that they are often assumed to be a couple themselves! To her and her daughter there was nothing strange about my son's behavior. He somehow found the one girl in the class for whom this behavior would be tolerated. I realized that behind the delay in social skills was an intuition that was working just fine.
The first time I have a new child over for a play date is always nerve wracking for me. I know Benny has difficulty at first and often displays more outrageous behavior at home than he would in school. So when Charlie came for his first visit I set up many activities ahead. Charlie was a particularly "cool" child with many friends and a PTA mom. I wanted this date to go well. I bought new paints, and papers in different sizes, set up puzzles and games and was ready to guide them from activity to activity when it seemed Benny needed a change. They were painting happily when Charlie ran to the bathroom crying. Benny ran with him and stood beside with words of comfort. I tried with great tension to figure out the problem...was he hurt, did he get paint in his eyes, was he feeling suddenly ill? Benny handed him paper towel after paper towel and gave him gentle pats on his arm. Once Charlie calmed down a bit (a good 10 minutes after he began to cry) he told me that he had put his elbow in the paint and wanted it all off. Once his arm was completely clean they went back to the basement. I followed then down and saw them take out a set of glitter glue tubes. Glitter glue is basically colored glue with sparkles throughout. I suggested they play with something else- something dry, something safe, after all glitter glue is not so different than paint. Charlie looked up at me with his big brown eyes and said "don't worry Mrs. Linder, I am not afraid of glue, only paint."
And so I see that all kids come with quirks, which may not cluster around a label, but are there . I am delighted that my son is able to be there for his friends and this is one of the reasons why inclusion works. We are all imperfect people trying to make it through life with issues. Some issues cluster into diagnostic categories, others do not, but everyone needs a friend there to help us when we have a freak out.
Do you find that the quirks of you and or your child are better tolerated by certain folks?
Sunday, 10 July 2011
Inclusion is my first meeting with a very well dressed principal promising me that he will "make it work," while lying on the sidewalk beside my unhappy son.
Inclusion is a five year old girl helping my son unpack his book bag, rather than hearing each day from his teacher that she can't possibly have the time to do this.
Inclusion is my son pushing the same girl on the swing at lunch.
Inclusion is my son's classmate coming over and with the timing of a seasoned therapist and the love of a friend teaching him how to play.
Inclusion will only succeed when teachers feel supported and never feel alone.
Inclusion works best when there is no easy alternative- no place for the child to be moved to.
Inclusion takes advantage of natural supports which develop when a child is placed with his peers.
Inclusion means that his teachers do not demand that he change before they teach him.
Inclusion means his teachers are willing to learn from him.
Inclusion is a place where acceptance is so universal it defies definition.
Inclusion is a place where every child is fully involved and has no limits places on what they can learn or who they can be.
Friday, 08 July 2011
Years ago, after extricating my son from a team of therapists with whom he made no progress for almost a year, I was worn down and low on confidence. It was also time to find a center based program for the following year and I set up to call a dozen or so programs. He did not have a firm diagnoses yet and I varied my story slightly with each call. I tried to sound like I was in control when in reality I was falling apart. Within seconds of speaking with the assistant director at the school which he eventually attended I felt a shift inside. She listened with such a sincerity that I could not help but to be completely honest about all the contradictory predictions I had been hearing. Her insight and sensitivity continued to be a tremendous source of strength for me. She allowed me to advocate effectively by first allowing me to share my thoughts freely.
Her name happens to be "Diane," coincidentally, the same name as I have. My husband coined the term "find a Diane." This is one of the first things I advise parents to do. Your "Diane" can be anyone at the school. At Benny's second school it was a paraprofessional, who took a strong interest in him, and seemed to have her eye on him for the best. My "Diane" at Benny's current school is the school psychologist. The important thing is that you have a person you trust completely. It is inevitable that even in the best school district in the universe, issues will arise. There will always be difficult conversations with teachers and therapists who can't possibly understand your child like you do. Your child is changing constantly and new challenges will come up even as a result of positive growth. There will always be comments made that make you angry, frustrated or make you cry. There will always be slight adjustments needed in your child's program. You will often be the first to sense this and the teachers and therapists may be too busy to hear you right away. This does not mean they do not care, this is because they have many students to think about. Your "Diane" is the person you can call when this happens. She will listen to you and calm you down and help you figure out the best way to handle the situation. She is someone you can call three days in a row and she will still sound happy to hear from you on the forth day.
Do you have someone you can confide in with complete honesty connected to your child's school? If not, why not? Are there times when you get frustrated and upset? Times when you have an idea about your child and want to communicate it to the school but do not know how?
Monday, 04 July 2011
Benny craves friendships and has made a few close friends over the past three years. It takes a solid, strong and insightful child to make it past the first few play dates with Benny.
Benny often ignores his friends at first, preferring to hide out in his bedroom or watch a video when they come to the house for the first time. I shy away these days from first time dates because they are so difficult for us all. I rationalize that Benny has two close friends and that is enough for now. For the past few months though he has been asking to have Jake come and I finally asked his mother and he came for his first visit today.
Benny waits by the window for hours anticipating the arrival of his friend, but as soon as the doorbell rings, he retreats to his room, and will not come out. In his room he is busy making strange noises- loud raspy attempts to imitate the ignition on a bus. I know this only because I see him holding his eyes to the wheels of a picture he had drawn. To Jake it must sound very scary.
Jake is a quiet boy with the largest blue eyes I have ever seen. His face has not caught up yet to his large front teeth and I see that he is close to tears.
Benny is not content to simply be alone in his room, he calls out to me repeatedly that I should tell Jake to leave, that he does not like Jake and he does not want to play with him.
I can’t figure out who to attend to first, but I choose Benny. My attempts to reason with him and then cajole him to go out and play make him angry and he decides to send me to my room, to my bed, yell at me to stay put and tell me that I am in time out. As he slams the door I felt a momentary relief.
I decide to stay in my room, curl up in my bed and feel the guilt for having made the move to an inclusive district. Suddenly it seems a cruel trick to have placed him beside the typical. Had he stayed in a self-contained program, there would be no bright eyed boy experiencing rejection in my living room, while I sit in exile behind a door. And Benny would not be failing to connect with a boy he adores, striving to make connections which might be out of reach.
So I begin to write and as I write I hear them talking. Jake asks where I went and Benny explains that he put me in time out. Jake questions further, does not really get it, and I fear that when he tells his mother, she will lose respect for me as well. It seems however that Jake thinks Benny is quite clever and cool. They discuss my situation for a few minutes and I hear Benny has softened, a kinder gentler child is back and slowly and quietly I open the door. I sneak into the den and continue to write, now on the couch tucked beneath my favorite window.
They are in the basement now laughing so hard I can’t make out the words. I tip toe to the door, they are playing trains, Benny is the LIRR and Jake is an AMTRACK. They build a track of big soft blocks and they race around, up and down, and then they find the hula hoops to use somehow. They run for a half an hour and I know they must be sweating now. I leave my den to bring them ice cold water and big stick pretzels. They eat them quickly, they ask for more. They are still giggling as they sit and snack, Benny telling Jake our recent trip to the city. I try to hold back my tears until I am safely out of sight.
How do you deal with the social challenges of raising a child on the spectrum? Does your child crave friendships he is not always ready to handle? Does anyone have an unusual play date story to share?