This week we got a letter we have been waiting for. It is a letter I have been anticipating yet dreading. It is an appointment for Noah that will kick start his path into the school system.
Because Noah has Down Syndrome, he will meet with a psychologist on the 21st November, who will put him through a series of tests and activities to determine whether she thinks his intellectual disability is mild, moderate or severe. Depending on which of the categories she chooses, the resources and help that he will, or potentially will not, get in school will be decided. This categorisation will have a significant impact on the next steps in his journey.
For most parents thinking about starting school is an exciting time, a time full of optimism, opportunity, friends and learnings. I remember the excitement when Anna was starting school. Her brand new school uniform laid out ready to go. She was so excited she couldn’t sleep. I imagined the friends she would make, the school plays, the homework, the songs she would learn, the books she would read. I was full of hope, excitement and pride as she headed out into the world.
This time is a little different. I have the same hopes and dreams for Noah, I am optimistic and excited as he approaches his new journey but I also have a sense of anxiety & fear that I did not have with Anna. I feel a huge sense of responsibility to get it right for him, to make his experience one of happiness, laughter and learning. I am acutely aware that he will have challenges other kids won’t have. It might seem strange but it is not academic ability that worries me most. It’s friends. I worry about how people will accept my little boy, how he will take part in games, how he will build relationships, how his voice will be heard. I worry that people will underestimate him, assume he is weak when in fact he is strong. People may not respect how hard he works to achieve what is expected of him.
Noah will not start school until next September but the planning for that day started early. He will go to mainstream school, the same school as his sister, the school he has been running in and out of for years as we drop her off to class. The preparation for this milestone in Noah’s life has been a long, sometimes difficult yet rewarding process.
For the last 4 years, as other kids play outside, head to swimming camp or run around with diggers and superheroes (Noah does all these things too by the way!), Noah has spent hours in therapy sessions or at the kitchen table trying to match shapes, colours & words. Put together simple jigsaws, identify and sound out letters and a whole range of therapy activities to assist his learning. He knows these are academic activities, he knows they are pushing his boundaries, he gets frustrated when he cannot get them right but he keeps coming back, he keeps trying and he is thrilled with pride when he pulls it off!
The upcoming appointment on the 21st November is our first real step in dealing with the school system for Noah. The psychologist he will meet does not know him, he has not met her before. She has not seen this little boy dramatically push his boundaries to get this far. He may go into that room in November and perform like a pro. He may do the puzzles, match his words, build the blocks or he may not. He may run into the room with enthusiasm or he may roll around on the floor for 45 minutes, refuse to look at anybody or to take part.
Of course when we get to that room, I want her to see the amazing little boy that I see. I want him to do himself proud but the great irony of our system is that doing well is not necessarily a good thing. If Noah does arrive motivated, determined and ready to go he may perform well. If he decides to show her what I know he is capable of, he will do well. But if he does well, the level of support he will get when he goes to school may be minimal and he will have to figure out how to keep up without help. What then?
Noah is a clever little boy with buckets of charm and potential. He works hard and he sees and enjoys the results of all his efforts. He has Down Syndrome, his vocabulary is limited, he cannot express himself the way other kids can so he needs help, support, love and encouragement to reach his potential. If he gets this support & encouragement, he will have an independent and happy life, contributing to society like everybody else and building his own dreams.
I started a blog because I have learned so much since Noah was born. I don’t want people who meet my little boy to see Down Syndrome. I want them to see the incredible, strong, capable person that he is. People may think children or adults with Down Syndrome are weak when in fact they are strong. Noah is constantly judged, measured against some kind of development chart or expectation but he fights and overcomes obstacles everyday with an incredible sense of strength, spirit and pride.
So on the 21st November, somebody will categorise my little boy and I have no choice but to just let it play out. Noah will arrive for his test and he will do however he will do. I don’t know what that piece of paper will tell me, what grade it will put him in or what judgement will come from it but I do know that when Noah gets to the school gate, he has most likely already worked harder then most of the other kids to get there and that in itself deserves respect and recognition.
I hope that Noah will get the resources and support in school that he needs and deserves but I will not let a piece of paper or category define him. I will not create my expectations from him based on a grade from a stranger. I will continue to encourage, love and support this little boy and no matter what that result of that assessment is, he will continue to surprise, inspire and motivate the people around him.
I am so proud to be his mum.