Having your special needs child accepted into the school of your choice has most likely followed the culmination of research, discussion, goal setting and many sleepless nights. A self congratulatory pat on the back is certainly deserved. It is a major step in the laying of strong foundations, and now it is time to help your child build a future supported by those foundations. You are ready to stand a ladder on those foundations and look forward to climbing each rung as new goals are set and achieved. The first step on your ladder of success most certainly must be the ability to communicate in an honest open way.
As the parent of a disabled child it is important to remember that when your child finally goes to school they will make relationships with people who really have little understanding of who they are beneath the obvious disability. It is up to you as the parent to help others learn about the personality of your child. In so doing you will be building positive relationships all round.
Every child, disabled or not, has a personality, innate interests, and a unique way of relating to others. Some kids display incredible understanding of the direction their life will take from only a few years old. “So why then do many people assume a disabled child is different?” For teachers the overarching disability may bring out protective reactions, concerns about coping, or fears about being judged by a parent as not caring enough. The possible interests of the child, their fears, shyness, or aptitude for some as yet undiscovered skill, can often lay dormant due to the fact management of day to day necessities relating to their disability is a priority. It isn’t difficult to imagine a teacher, faced with your perceived expectations, your child’s needs which they may be inexperienced in handling, and the needs of the majority of the class they also have a responsibility for, feeling overwhelmed at times.
In my own experience, because of the severity of Robs condition, the disability was seen as the challenge, when in fact as far as I was concerned, stimulating his mind was the challenge. It was the very reason I chose a regular school as opposed to a special school for physically disabled kids. Every parent has to draw on their own knowledge of their child in order to decide the school they should attend. I chose a regular school because of Robs verbal ability and inquiring attitude. I sometimes wonder if he would have developed better physically if attending a different school. I don’t dwell on that though, knowing I researched all possibilities at the time. No two kids are the same which makes it extremely important that the views of the parent are heard by all authorities. You are the expert.
I believe if you build imagination and excitement in any child they will blossom. It is no different with a special needs child. The child doesn’t see their disability as a challenge in the same way we might. They live with their constraints daily. They are just who they are. Another kid who wants to be treated as a kid. Help your child achieve small goals and they will laugh and discover just the same as others. As your child’s parent you know this intrinsically, but others may not, so you really must be the mentor to your child’s teacher. You have to open their eyes to the child beneath the disability and discuss the ways you can see your child assimilating into the group as a whole.
Communication is your number one priority. You will gain trust from teachers, and they will feel able to share their concerns with you. When you include your child in regular meetings he or she may have novel ideas about how to fix a problem. I have heard many times how the child should not be included in all meetings. My son, having gone through all the things I talk about, says without doubt he appreciated being included. Before he was consulted about his thoughts when we had an issue, he knew he was being spoken about. He would be angry with me and was wary when he saw me talking to his teacher.
After he became a regular member of our small meeting group, we would often be surprised by the solutions to problems he came up with himself. Sure we might be talking small issues of no real concern at times, but as the years pass the issues may be more pressing or involved. Your child will be honing their problem solving skills year after year as well. Today Rob helps me enormously when we are faced with a problem. We discuss and decide together. By continually strengthening the foundations of communication life will be easier for you both.
Rob had been involved in goal setting meetings almost as soon as he began school. It gave him the opportunity to say he would like to be involved in sports in some way. He was lucky his teachers were determined to find a role for him which meant a great deal to me. They had learned to look beyond the wheelchair, and instead saw the little boy who wanted to play with his mates. I firmly believe my open honest communication, and having Rob involved in decisions, was a catalyst for the way teachers went to all lengths to include him as much as possible. I do hope they looked back on the chaos caused at times with a laugh. I surely do.
Rob had been waiting for quite some time for an electric wheelchair. His first couple of years at school saw him pushed around in a manual one. The chair finally arrived and it was exciting indeed. Now he could take himself around the school and enjoy watching the kids practice their skills for the upcoming sports day shared with other local schools. Rob asked to be included, and his dedicated teacher found a way.
The school oval was surrounded with cheering parents and flags in the colors of visiting schools. White lines segmented the oval into different areas for running, high jump etc. Rob waited patiently to be called for his event. It had been decided to let him line up with his classmates who were competing in the 200 mt sprint. Rob had his new electric wheelchair to show off, and the school could proudly showcase their inclusive attitude to all the other schools. I was feeling humbled indeed. My son was being included and that meant I was being included too. I was so proud.
The starter gun went off, and so did the line of kids. The kids had to gather speed, and for little legs that was a slow windup. But Robs new wheelchair had instant speed. It was almost like zero to full speed in a flash. Rob just kept gaining as my smile turned to a stunned look of disbelief. The cheering hushed as he crossed the line. No one around me knew what to say. Robs teacher must have felt a strong pang of regret when she saw two of the kids throw themselves on the ground and begin wailing. Parents were consoling their children as a small delegation of teachers came over to chat with Rob and myself.
“Maybe you might like to watch the next race Rob.” the teacher said. But Rob was adamant. He had won that race, now he wanted to win the next one. He didn’t care about the fall out. This was the first time he had ever been included in such a way, and as far as he was concerned, if he was faster than his mates, then more power to him. It took some careful talking to assure him his value to the sports day would be even greater if he took on the starter role. He would be involved in every race that way. But he would have to yell ‘go’ as his hands wouldn’t allow him to use the starter gun. Fortunately he felt he was being given an important role.
Moving forward Rob was encouraged to be the umpire for cricket games, and the goal umpire for footy. There were a few problems when his decisions were appealed but he said if it was his job it was his decision. Everyone felt the solution to including Rob appropriately had been found. That is, until the rain clouds of winter began to drop their load.
The springy firm grass that covered the oval transformed into a spongy waterlogged vice around the wheels of a heavy wheelchair. Undeterred Rob figured out if he kept moving he was less likely to sink. To make matters worse, new carpet had been installed in the hallway and classrooms in the main building. The bell would go and Rob would drive through the building with his tires leaving behind long streaks of mud. I can only imagine what the cleaners thought each day. To the credit of his teacher she was always trying to find a way around the problem, and this problem was solved after consulting Rob about what he thought might work. He suggested washing his tires and a bucket of water was put near the door to the building. Robs tires were washed before heading into class. Another small problem overcome.
For the brightest sparks in the class there was a great opportunity for some mischief. Rob was always one to push the envelope so he was only too happy to befriend the troublemakers. He was encouraged to head back down to the oval from which he had now been banned, at least till the ground dried out. I lament to this day I didn’t see the fun or hear the laughs. But the description of the mayhem still resonates.
One of the teachers saw the fiasco unfolding through the window of the staff room, immediately springing into action. Rob was driving around in circles spinning his wheels and skidding in the mud. Two other boys were chasing him and getting covered from head to toe. The story they told in the principals office later sounded plausible. Apparently according to the boys, one of them had teased Rob and he took off after them. Rob couldn’t be blamed for attempting to stand up for himself, so going onto the oval was overlooked. The boy who teased him had apparently been misheard so it was all put down to an unfortunate incident. It would be quite some time before Rob told me the real story.
Apparently he had wanted to drive his wheelchair in the mud, slipping and sliding, the way he had seen hot rods sliding in the mud on TV. The two boys egged him on and kept him excited by running behind and cheering with every wheel spin. They had worked out their cover story and sold it like professionals. After that day Rob was told the motor on his chair would be disconnected during recess and lunchtime, if he was seen near the oval before it dried out.
There are more funny tales I will share in the future, but for now the important lesson that comes out of this one, is the very real need to keep up strong communication with the school and teacher. This one episode brings up many instances of times when I could have felt unhappy about decisions if I had not been a participant in the discussion. Other kids may have found themselves in trouble when Rob was the real instigator of mischief. The children in the first race who felt cheated needed to be talked to carefully so they wouldn’t be angry with Rob. On top of all that we needed to work out ways to move forward.
Parents of a disabled child have a really important job to do. They need to communicate with both the child and the teacher, and make sure everyone is on the same page. I truly believe it is important to make the child a part of the conversations and include them in the meetings you have with the teacher and principal. The child knows they have a disability and they can feel upset if they believe they are being discussed behind their back. It can breed hostility and mistrust. Often Rob would come up with a solution to a problem no one else had thought of. He understood his needs far better than anyone else.
No matter how disabled the child, every child will find a way to achieve their goal. If I as his parent, was unaware of the lengths he would go to to drive around in the mud, how could his teacher be expected to know the mischief lurking below the facade of a poor little kid confined to a wheelchair. When you build a solid team based on strong communication, you are ready to climb the next rung of the ladder and set a new goal. If you make good communication your priority when your child starts school, you will save yourself a lot of grief over the coming years.