There is a great german saying that things are rarely eaten as hot as they are cooked, meaning that real life is rarely as bad as you cook it up in your head. This saying was flying around in my head as I sat in a recent meeting with Noah’s school to discuss his progress and learning plan for the year. We’re two months into the school system now and whilst it would be a lie if I said it is easy every day, there are so many little achievements that the challenges are becoming less daunting. The school has been an incredible support, they enjoy having Noah as their student, they encourage independence and inclusion and they work with all my quirks as a parent!
I often giggle to myself in the mornings on the way to school as Noah cruises through like a local celebrity. I worried about how people would view him and they do look at him all the time. However they are mostly looks of adoration or surprise rather then looks of pity or tilted head. I know how charming Noah is but the fact that he is so popular among kids and parents alike is a surprise to me. My preconceived notions of Down Syndrome had me believe he would be treated as somehow less worthy or less appreciated but so far the opposite is true. People are fighting for a moment with him, a smile, a cheeky grin or a hold of his hand. Like most of us, he can be grumpy and dismissive so its like a little reward at 8:30 in the morning if they get a smile or nod!
Then there’s the schoolwork. Despite all my fears and worries, Noah is doing very well in that he is making progress every day. He loves going to school, his teacher and SNA are wonderful, he has friends, he follows instructions excellently, he performs in the structured environment just like all the other kids do, he has responsibilities, jobs that he is in charge of and he is fulfilling the tasks given to him which are adjusted to his level of ability in the classroom. He loves doing homework, he is proud of himself even though the task may be to just draw a line or point out to things in a picture. He is practicing to perform in school assembly with the class, he knows both the words and actions for the song. He went on his school tour with his class and was able to tell me some small details of his adventures. All in all, a bucket full of successes!
So friends ask me why it is hard. If all this great stuff is happening, why do I find it difficult?
I suppose I am on a continuing path of acceptance and adjustment. Noah is doing so well and has come so far that I am very proud of him but it is really only when you get into the school system you realise that despite the huge steps we have taken, there is a sizeable gap between Noah’s abilities and those of other kids his age. I have never really compared Noah to other kids his age because up until now, we have been surrounded by friends or cousins of all ages and Noah is Noah, just like Anna is Anna. I have never really spent time comparing either of them to anybody else their age. But when you get to the classroom full of children the same age, these comparisons become more difficult to avoid. Those friends he is close to start to do things together that he cannot keep up with. Noah is smart, he knows when he is out of his depth or when others are completing tasks he is not able for so he disengages, moves away and that can be difficult. I need to remind myself regularly that we are on a slightly different path, we are taking our time and Noah is happy to go at his own pace. I need to stay on course, be patient and enjoy each small step as we achieve it.
I will also admit that Noah’s welcome popularity can present its challenges. I suppose I feel like we are on a strange kind of stage. A display of how well we are doing, how we can fit in and how cute a kid with Down Syndrome can be. As one of Anna’s 9 year old friends pointed out to me recently: “Noah is so cute, we love him. I think if he didn’t have Down Syndrome, he would not be as cute”. Anna beamed proudly back at her, delighted that her brother is so special and her friends don’t have a bro like hers but I approach this wonderful popularity with some trepidation. I find myself having to slow down and get perspective, fight the pressure to perform, to expect Noah to fulfil other people’s expectations, laugh it off endearingly when he does not perform and be charming and thrilled when he does. I try to be publicly positive at all times even though I have my days where I would prefer to climb under a duvet with a huge bottle of Bordeaux.
As parents, from that first day that we meet our babies, we make assumptions. When they start school we assume they will have friends, they will read, they will write, they will colour, they will learn new letters and words, they will love books and stories, they will sing songs. Parenting a child with special needs is not the same. Rather then having a rough draft of all the things your child will achieve, you find yourself starting out with blank pages. You are no longer sure what that rough draft will look like, you are full of hope that you will fill the pages of your book with achievements and you learn that every word you write is a step forward, a step towards getting to the next chapter, a celebration of another tick in another box.
Of all my learnings so far, I think this is the one that makes parenting not only easier but also so much more rewarding. I have accepted that it’s OK if my book is yet unwritten. Of course I could fill my writings with lists of all the things Noah’s friends can do that he can’t but I would much prefer to talk about how far we have come. It was not a given that he would be able for mainstream school but he is. He walks in proudly every morning, he hangs up his coat and bag, he follows his lesson plan, he learns new words every day and loves to surprise us with every one of them! He may not hold down a detailed conversation but he can imitate almost every word of Despicable Me and Descendants 2. He can draw with chalk on a blackboard, he can perform a song, he loves his homework time and completes the tasks given to him. He is a little boy working hard to fit in with other kids who in some ways are stronger then he is and he is pulling it off with personality and style! He is popular, he is loved, he is a friend, he is a student, he is smart, he is happy, charming and hilarious.
I remember all of this great stuff every day but I also allow myself those difficult days. It doesn’t have to be sugar and roses every day. I enjoy those days that are and for those days in between where it can be daunting and hard work, I have friends, I have dancing and I have wine. For these wonderful gifts, I am ever grateful!