On my soapbox: Marriage and pre-natal testing

It has been months since my last post, and while Max’s story has continued to unfold, my attention has been taken up with grappling with the daily minutiae of French administration. These challenges have managed to completely paralyse my creativity, so this blog has been very neglected. But the events unfolding in both the Australian and UK media over the past few days around Down syndrome have prompted me to revisit it, and hopefully to initiate some discussion among us to try and make sense of what we are dealing with.

On my soapbox

So, just so we are all on the same page, here are the two issues under discussion: In Australia, a young couple with Down syndrome has recently been the subject of Australian Story, an excellent television program that broadcasts documentaries of ‘ordinary’ Australians living ‘extraordinary’ lives. This couple is in love, wants to marry and have children; their parents are very anxious about whether or not this is achievable without large amounts of support from them. I haven’t seen the program as I can’t access it from here, but I did see a snapshot of it in an interview on The Project, a current affairs program, that had been posted online.

In the UK, a medical breakthrough in pre-natal testing has stimulated debate on the subject of termination of foetuses with Down syndrome (DS). At the moment, the general, non-invasive screening for DS has about 85% to 90% accuracy while definitive tests are invasive and carry a risk of miscarriage. The new test is non-invasive and has 99% accuracy, so it seems likely that many more prospective parents will choose to have it. Could this lead to higher termination rates where the foetus is found to have DS?

Both of these subjects are controversial, complex and very close to my heart. Max is in a long term relationship (more than three years) with his delightful girlfriend – who also has DS – and they, too, want to get married. Max adores children, and has said he would love to have babies of his own. This raises a huge moral dilemma for me. I would love nothing more than for Max to be happily married and a father, and I do believe that it should be his right to choose to have a child. But – and it is a big but – I honestly can’t see how he and his girlfriend could manage the overwhelming task of raising a child. They have a wonderful relationship, but my observation is that it is a naive relationship that lacks an understanding of the difficulties all long term relationships face, especially when it comes to raising children. 

My concerns are not limited to the daily routines of feeding, changing and bathing a newborn: these challenges in themselves would be huge, but could possibly be overcome with support. But what if the baby is unsettled and cries all the time? How would they deal with the sleep deprivation? What about a toddler who challenges their authority, who has tantrums and runs away from them when out shopping? What about the eight year old boy, for example, who wants his dad to coach his soccer team? And the 10 year old girl who wants her mum to coach her netball team? And who, for that matter, will drive them to soccer/netball/sleepovers? Who will help them with their homework? And what if, and for me this is the biggest worry of all, what if they have a baby with Down syndrome? I know from first hand experience that a child with DS needs a lot more attention than a ‘normal’ child. How would they manage? 

Max with his 1st cousin once removed (I think!). Anyway, changing his first nappy. He adores her!!

Max with his 1st cousin once removed (I think!). Anyway, changing his first nappy. He adores her!!

Of course these issues are only arising as a result of progress. We are now seeing a generation of young adults with DS who have grown up as part of their family; who have been educated; who engage with their community and who lead interesting, meaningful and reasonably long lives. These are all wonderful things and an indication of how society is changing. But as a result, new challenges are being thrown up. At the moment there are no reliable data around the likelihood of two people with DS having a baby with DS, as such cases have rarely been documented. Evidently infertility is more common among people with DS, but again, data are not reliable as most people with DS haven’t had fertility tests. But all this aside, my dilemma remains: should Max be allowed to exercise his human right to father a child with a woman he loves? Or should I, as his guardian, carer and biggest fan try to help him change his mind because I think that in all likelihood (not through lack of love, goodwill or effort), he will not be able to care for his child adequately? I honestly don’t know the answer. And then there is the question lurking inside me that I don’t want to ask: am I being selfish? Because much as I love the idea of being a grandmother, I really don’t want to be responsible for raising any more children, and I fear that Max’s children would become, largely, the responsibility of their grandparents. 

And then there is the question of pre-natal testing for DS. What does this new, reliable, non-invasive test mean for our future? Can we expect that DS will become a thing of the past? And, if so, is that a good thing? This worries me a lot. Is this a quest for perfection in the human race? What constitutes perfection? And WHO gets to decide this? Please don’t misunderstand me: I am pro-choice for women who are well informed and understand their options. My concern is that we are weeding out perceived ‘imperfections’ in our society without considering the implications. If DS becomes a thing of the past, do we then concentrate on eliminating something else? And who do we imagine will gain the most from this cleansing? Will it be the parents, who have conceived a child out of love and then endured a termination and the sadness that brings? Will it be the unborn foetus who is being ‘rescued’ from a marginalised life? Certainly none of the people with DS I know seem to be miserable or feel inadequate; in fact Max, as an example, has higher self esteem than his brothers. Or, and this frightens me most of all, will it be society as a whole that will benefit from no longer having to accommodate this disability, nor bear the financial costs that supporting people with disabilities brings?

Undoubtedly knowledge is power, and telling parents in advance that they are expecting a child with DS should be beneficial, as long as they have all the information. My concern is that most parents will panic (I know I would have) and will be advised by medical professionals to consider termination as the most sensible option. But if they knew the stories of families such as mine who, when given a child with DS unexpectedly, have overcome the difficulties and have come to not only accept DS, but to appreciate the wonders a disability like this brings with it. I’m not saying that it’s always been easy, and we have had lots of dark days, but when it comes to a reckoning, the joy, enrichment and wisdom having Max in our family has brought far outweighs our early trepidation and sadness.

Screenwriter and actor Sally Phillips who has a 10 year old son with DS put it beautifully when asked in a recent BBC interview about her experience and she said:

‘I was told it was a tragedy and actually it’s a comedy. It’s like a sitcom where something appears to go wrong but there’s nothing bad at the end of it.’

For me, that sums up our life with Max. He is funny, compassionate, deeply intuitive, creative and has higher emotional intelligence than any of the rest of his family. Before Max was born, if anyone had asked me how I would feel about having a child with DS, I would have said that it would be a disaster. Now, I consider it to be a delight, a privilege even, and I know that the world is a better place with him in it. So, I guess my point is: Yes, bring on the new testing if you must, but PLEASE make sure that every family who gets a positive result has all the information at hand before choosing their course of action. 

So, it’s time for me to get off my soap box now and throw it over to you. Please, share your thoughts, feelings, opinions and be as brutally honest as you want to be. I want to hear from you, all of you – those of you who have a loved one with DS and those of you who don’t. I need all your wisdom and insight to help me get these issues into perspective. I don’t expect to have a lightbulb moment here, but maybe with your help I might be able to start to make sense of it all. I certainly hope so. 

 

 

 

 

School: sorted; how to get there? hmmmm…….

So, having finally found a school for Max where he was happy, we started to settle down into a more harmonious family life. There were still problems: because Max’s school was some distance from home and there was no school bus (anyway, it would have been too much for him to have caught one were there one to be caught), he qualified for the school transport scheme. This meant that every morning a taxi would arrive at our house to collect Max and take him to school. Perfect, I hear all you frazzled mums saying, thinking of your morning panic as you try to get everyone dressed, lunch packed and out the door to catch to bus. Well, yes, it should have been. But unfortunately it didn’t always work out that way.

Let me try and describe the scene for you. Max: starring role; loving himself sick in his uniform; enjoying the packing up of lunch and school bags; slightly less interested in the idea of being transported away from home and the prospect of any of the latest Disney series that he may/may not be allowed to watch at some as yet undisclosed time in the future. Me: supporting role; frazzled (borderline hysterical) mother; desperate to get Max off to school so I can then put my other three children in the car to drive them to their bus stop in time. Really don’t want to chase the bus. Scene: house in somewhat chaos; Max standing firm and refusing to leave said chaotic house but enjoying his school uniform and lunch box to the point that he won’t relinquish the latter in order to allow support actor Mum to put it into the bag to take to school. Other three boys (in minor, but very important roles), looking on in various states of uncertainty; disinterest; anxiety depending on how they felt when they woke up that morning.

o-SCHOOL-BUS-facebook

So, the taxi arrives. I, in my supporting role, have lost the script and it appears my prompter has gone AWOL. Minor, supporting actors now become incredibly important as I have run out of ideas. ‘Harry,’ I ask calmly (read screech hysterically) ‘can you please try and persuade Max to get his stuff and get into the taxi for school?’ 

So once again my hero, my darling and my Sergeant Major son at the age of ten, goes in to negotiate for greater good of the family and a positive outcome for the day. It’s only 7.15am. If he succeeds, then we don’t need to move to plan B; if he bums out (as is often the case, no fault of his poor darling), then we move to the Lieutenants: Sam and Louis, just six and five years old. Somehow, between the three of them, they manage to persuade Max that there is great good to be gained from getting into the taxi and going to school. Phew! Am once again poised, calm and confident in my role as a mother and can safely transport my other three sons to the school bus before going home for a good cry. It’s 7.45am.

As if the anxiety of the ‘getting into the taxi’ routine weren’t enough for me, and more importantly for the children, there was then the anxiety of who was driving the taxi. Over the years we had many different experiences, and of course the driver would have had a huge impact on Max’s willingness to get into the taxi in the morning or not. We had the driver who hit him; referred to him as ‘the boy’; and dropped him home one day without his ($800) glasses telling us ‘the boy’ had dropped them out of the window and it wasn’t his job to stop and pick them up; and then we had drivers who used to stop off to buy Max his favourite packet of chips; addressed him as ‘young man’ and bought him birthday presents.

taxi

I think I’ve said in previous posts that Max is a very accurate barometer for humanity; this is a perfect example of what I mean. No taxi driver enjoys dealing with a child who is fidgety; doesn’t want to wear his seatbelt; doesn’t like his travel companions. Some respond with aggression; others try to find a way to make the journey such a treat the child looks forward to it. And these drivers became some of Max’s best friends and strongest allies. 

As for Mum, in my supporting role, it was the difference between either Mother Theresa or Hannibal Lecter arriving at my door in the morning to collect my darling boy: one had me slobbering with gratitude; the other had me shrinking in fear for his well being. And the day that followed was entirely shaped by that morning’s experience. In hindsight, we were lucky. As a supporting actor, I was far too big for my boots and made a lot of fuss about Hannibal Lecter who clearly thought his role in the drama that was Max’s life was very much more important than it should have been. As a result, his appearances became less and less frequent and were replaced with Mother Theresa and her colleagues who made Max’s journeys to school an absolute pleasure. So my days became easier over time, as they ceased to start with anxiety, tears and fear, and become seamless transitions between children at home to children on their way to school. 

So, there we have it, my friend. What can I tell you? You are going to have to overcome obstacles you have never imagined existed, and you are going to have to deal with the worst kind of people you can imagine. But, and this is important, but you will have the immense privilege of meeting some of the best kind of people you probably never imagined existed; and you will discover in yourself a strength you never knew you had. Which is a great gift. And if, like me, you have other children in your family, you’ll discover the beauty they carry within them. Which is the greatest gift of all.

 

Revisiting the school years: for the better

I have been aware for some time that I deviated from the stories of Max’s school years as other things have sprung to mind. This is indicative of the incredible freedom of blogging: chronology isn’t such a big deal and I can write about whatever is foremost in my mind at any one time. But, in this case I think I really need to go back to school, so to speak, as any parents of youngsters who may be reading this might be frantic to know how things worked out for Max.

Well, as I alluded to in the last post about Max’s school years, things turned out well in the end. In fact, the biggest obstacle I had to overcome was my own preconception of what school should look like for Max. That’s to say, I really believed full integration was the only model for him. Of course, in an ideal world where all things are equal, I honestly believe this is the best model for everyone, as we should all grow up side by side with people of all abilities, disabilities, religion, race, sex etc etc. But while the social systems with which we live are so broken that education and disability services (to name a few) receive significantly less funding than military defence, for example, often this perfect model is difficult to achieve. 

So John & I set about finding a school for Max where he could learn, make friends and be happy. We spent weeks looking at different schools (mostly public) and they were all lovely, in their own ways. However, there was always the problem of support for Max. We were variously offered part time enrolment for the amount of hours of support he would receive (about three hours a day); the option of us paying for additional support so he could be enrolled for a longer day – by that I mean a shorter day than any other ‘normal’ child, but a bit longer than the government funded support would allow for; and the option of me being involved in his daily support needs. None of which were perfect. So we moved on to looking into ‘special’ schools and schools with dedicated support units. And it was in this latter category that we found the place for Max.

Max's graduation. Not sure who's prouder him or us! Lovely moment
Max’s graduation. Not sure who’s prouder: him or us. A special moment!

To be absolutely honest, I still have some reservations about any kind of segregation in a school, but at Southern Cross Ballina (where Max was a student from Year 2 to Year 12), the support unit model worked really well. He finally found himself in a classroom where the teachers respected his individuality and adapted to his needs. He had classmates who were his equals and he still enjoyed the integration of art, sport, playground time and music in the general school environment. I’m not saying we didn’t have problems; we did, but at least now there was a spirit of ‘we’re all in this together: what can we, as a school, do to make things work for Max’.

I remember in his early years at Southern Cross he would occasionally have a huge temper tantrum which would result in us being called in to take him home. On a couple of occasions these tantrums included him hiding under a desk and hurling Lego missiles at anyone who approached him resembling authority. Not cool, nor funny, and for us very distressing as Max displayed none of these types of antisocial behaviours at home. But what I want to say here, my friend, is that the teaching and executive staff handled it beautifully. While there were clearly discipline issues to be dealt with, there was no judgement or anger. We were met with sympathy and smiles. Max was asked to go home with the promise of a speedy and welcome return. And his principal at the time (with whom I crossed paths often over the subsequent years in our professional lives) always recalled with genuine humour and affection Max’s bullseye efficiency with those Lego missiles: not one of them missed their mark!

And it was here that we were asked for the first time what we hoped Max might achieve at school; what our particular goals and dreams were for him. When I replied ‘to read for pleasure’, I wasn’t told it was impossible. I was told that while it was unusual for someone like Max to read other than for information, they would do their best to help him achieve that goal. And they did: Max reads for pleasure (admittedly it’s Hannah Montana in a Disney book and Guiness World Records and the like) but when the rest of us settle down to read, or get our books out on the beach, Max does too, and I love seeing him do it.

So, my friend, my message here is that if at first you’re not happy with your school, try and try again. Max was blessed with many outstanding teachers and support staff at Southern Cross (you all know who you are and I love you all for it) but I want the final word in my post today to mention one in particular. I won’t name her but an absolute treasure who taught Max in early primary school and now has adopted a beautiful daughter of her own who has Down syndrome. I think it tells us a lot about the calibre of the person who chooses to work with people like Max when they go on to choose to raise a child like him. These jewels among humanity are out there, and they want to teach your little one. It’s just a question of finding them.  

Have a look at this… it speaks louder than all my words

Have a look at this!!!
Have a look at this!!!

So for the past few months I’ve been telling you all sorts of stories about Max: how funny he is; how talented he is; how much he has enriched my life and the lives of all his family and friends (albeit after a shaky start when we didn’t really understand what having Max in our family was going to mean). Now I want you to hear from Max himself, and see him in action, because I think once you’ve had a chance to listen to him talk and watch him dance, you might get a better idea of what I’ve been banging on about!

Recently, Max’s Disability Service Provider (DSP) RED Inc made a short film of Max to demonstrate how much a person like Max can achieve with the right support in place. When I watched this clip for the first time, I cried – not tears of sadness; no, far from it. I cried tears of pure joy, pride and gratitude that I have Max in my life and that he has had the opportunities to follow his dreams. So, my friend, without further preamble, please take five minutes to watch this beautiful film of Maxy. I can’t upload it here as it’s too big a file, but you can click on the link below and it’ll take you straight there. I hope you love it as much as I did.

 

https://vimeo.com/152220983

Maxism revisited: a welcome breath of fresh air

Dear blog friends: I have been neglectful of late. While I apologise for this, I am secretly delighted that the reason for my silence has been my re-immersion in Maxism and my renewed admiration for this very special young man. Let me explain: I have always longed to live in the south of France. It was a dream my parents had, but sadly they died too young to fulfil it. As a child growing up in London, I spent all my summers in the mountains near Nice with my family, so I have always had a certain nostalgia for this part of the world and have longed to spend some years there. 

Having a son with Down syndrome, for many years I assumed that I would never be able to live my dream; that I would need to be ‘hands on’ with Max throughout his life; that he would never be able to manage without John & me nearby to manage his day to day existence. Over the past five years or so, my perspective shifted dramatically, partly due to Max’s obvious desire for independence, but also as a result of John & me deciding that we would do absolutely everything in our power to make this work for all our family.

So why am I telling you all this? Because, my friend, I want you to know that many things are possible that, when your baby is tiny and not thriving; when your toddler is not meeting their milestones; when you think that your lives cannot follow the path you had hoped they would, please think again. Of course, all people with DS are different and they will all have different comfort zones, but I encourage you to push your youngster to the edge of their limits. Because I really think you will be pleasantly surprised. 

Me, Max and his brothers enjoying the frozen lake in Poland
Me, Max and his brothers enjoying the frozen lake in Poland

What’s prompted me to think of this now? I hear you ask. Well, last October, after about five years of planning, John & I finally took the plunge and left Australia for an indefinite period in France. We sold our family home, which was a big wrench; installed Max in his new house, which was a big wrench for us but an apparently a fantastic adventure for Max; sold our business which was a pleasure for everyone, and bought one way tickets to Europe. Now, clearly this whole jaunt (which, when I read what I’ve written here, seems incredibly irresponsible) is only going to work as long as all our boys are happy in Australia without their family home to visit from time to time. And of course John & I need to have our ‘fix’ of parenting in general, and Maxism in particular.

So to get things started, so to speak, we arranged for all four of our boys to fly from Australia to meet us in Poland for Christmas and a five week holiday travelling in central Europe. While this journey would have been too much for Max to manage alone, he did fly from Ballina to Sydney where he met my sister Charlotte and his younger brother Sam, both of whom flew from Sydney to Krakow with him. They arrived in various states of disrepair, with Max absolutely best in class for post 30 hour flight liveliness! We then went on, as a group of seven, to travel to six different towns/cities in Europe; stay in different accommodation for between three and seven nights at a time; visit museums and art galleries, including the Nuremberg Nazi rally grounds where there was an audio guide detailing the atrocities of the Nazi party in the lead up to and during WWII.

Max dancing to buskers at a flea market in Berlin. As you do....
Max dancing to buskers at a flea market in Berlin. As you do….

 

So what’s my point? Well, simply put, Max did everything we did (with the exception of Auschwitz) and loved it all. Sometimes we altered our itinerary to include something for him that none of us were that interested in (zoo in Berlin, for example), but mostly he came along with us to everything. And it was completely his choice to do so. Despite constant moving from one B&B to the next, different beds etc, he was absolutely fine. He took what was important to him from the museums and galleries we went to, then when he’d had enough, he was happy to listen to music and just ‘be’ with his family.

I really want to share this with you, my friend, because when you have a child with Down syndrome, it’s hard to see how family life can continue as ‘normal’. I remember when Max was tiny I thought my life could never be ‘normal’ again. And in lots of ways I was right about that, but only in a good way. The ‘heart brimming with happiness’ things I was afraid may be impossible, such as travelling with my family; having all my sons living independently and making positive contributions to society; having happy, well adjusted children and a cohesive family, have all been wondrously achievable. And these things have been in spite of, and as a result of, having Max in our gang. Because after fearing it would be impossible, when it all falls into place, there are no words to describe the joy I feel. So the early anxiety makes the later success so much sweeter. 

Hang in there, my friend. Listen to the advice you’re given, but keep an open mind about what you and your little one can achieve and enjoy together. Really, the sky’s the limit.

Changing perspectives, paradigm shifts, and a lesson from a teenager

So for the last couple of posts I’ve digressed a little from Max’s life and talked a bit more about how those around him have impacted on him. This time, I just want to write a little piece about how much Max has changed our perspectives, that is mine, John’s and those of our three other sons. I know I’ve spoken about this to some degree in previous posts, but a conversation I had recently with his youngest brother Louis really brought it back into sharp focus again.

Going back to our early days with Max when we thought that our lives had taken a turn for the worse, I spend many dark hours dwelling on the ‘might haves’ and ‘should haves’ and ‘if onlies’. What this really meant was that I was questioning my lot and dreaming of a life where Max didn’t have Down syndrome. I often used to wonder how our lives would have been different had we not had a child with DS, and of course I believed that things would have been much easier. This is complicated, because I didn’t want a different child; I just wanted Max to have less chromosomes. But of course, if that were the case, he wouldn’t have been Max. 

One of the questions I used to be asked was: If there were a ‘cure’ for Down syndrome, would you get it for Max? This is an incredibly complex ethical question (for the reasons I have just mentioned) and of course it is utterly hypothetical, but over the years I’ve felt it to be an important indicator of my acceptance of Max just as he is. If I’m going to be completely honest (as I’ve promised to be), in those early days I think my answer to this question would have been yes. Because at that time I couldn’t begin to see a future where Max was successful and we were a truly happy family. Then, as I’ve said before, as the years passed my perspective has completely changed. 

Let me tell you a story that I think really demonstrates how important this change in perspective is. Over the past seven years or so, one of my professional roles has been as a facilitator of Stephen Covey’s        ‘7 Habits of Highly Effective People’ program. Without going into too much detail, the program covers seven stages of development that allow participants to become more self reliant and more effective in all their interactions with others, both personal and professional. In the foundation of the program, Covey discusses paradigms (how everyone sees any particular situation from their own perspective, based on their own conditioning), and how important it is to be able to shift one’s paradigm in order to see things differently. Or more colloquially, how to walk a mile in somebody else’s shoes. While facilitating this segment of the program, I often used my experience with Max as an example of a major paradigm shift, as John & I had to completely readjust our perspective in order to appreciate how our baby could achieve everything we had dreamed he would. As I said in a previous post, we achieved this mostly by challenging the definition of success, but for me at least, I knew I had undergone a huge paradigm shift when my answer to the ‘cure’ question changed from ‘yes’ to ‘no’.

Max & Louis. The day Louis left for gap year travels
Max & Louis. The day Louis left for gap year travels

I can’t put my finger on exactly when this happened (probably about the same time I stopped thinking of Max as my son with Down syndrome and just as one of my sons), but I know that I’ve never looked back. I finally understood that for all the negatives that are associated with DS, there are as many, if not more, positives. The reason I’m sharing this with you now is because the other night as John, Louis and I were having dinner together, we were talking about Max, and Louis brought it up. He said:

‘I really hope this isn’t selfish of me, but if Max were offered a cure for Down syndrome I really wouldn’t want him to have it because I love him just as he is. If he didn’t have DS, he wouldn’t be the same and it would be really weird.’ 

Well there we are. My teenaged son has a clearer insight into inclusion and social equity than many mature and well educated adults. Of course he’s had the advantage (and yes I do mean advantage) of growing up with a brother with a disability allowing him appreciate the many gifts a person like Max possesses, and the joy he can bring to others. It brings to mind a line out of the film Bridget Jones’s  Diary (yes, my friend, I am shameless in my devotion to Bridget, my love for the books and the pure, mindless enjoyment of the films) when Bridget and Mark Darcy finally realise that they’ve fallen for each other. After an excruciating evening at a dinner party with ‘smug marrieds’, Mark follows Bridget to the front door as she’s leaving, where he tells her, ‘I like you very much, just as you are.’

Well, Max my darling, I love you completely. Just as you are.

 

Balancing the scales in favour of equality (and loving the women in Max’s life)

It would be remiss of me to leave things as they were at the end of my last post without mentioning the many incredible women in Max’s life. His home life has been dominated by the presence of men, purely by chance, and it’s been an overwhelmingly positive experience for him. He’s also had the larger network of men in his extended family: uncles, cousins; friends etc who have been fantastic influences in his life. But it needs to be said that Ying without Yang is unbalanced; the women in Max’s life have as big a part to play as the men. Just because they’re not part of his immediate family doesn’t mean they’ve had a less integral part to play in his life; in fact the opposite is true. In this day and age of internet, mobile phones and social media (all of which are so intuitive for Max) his ‘lady friends’ actually outnumber his male friends, and in some ways are more likely to be Max’s pillars, if you like, than the men. 

I hate generalisations, but in this case, I’m going to apologise in advance for applying one to our situation with Max. The men in his life are wonderful: they are kind, supportive, caring, but mostly fun. The women in Max’s life are his rocks: they are the ones who are sensible, offer practical advice and support, and sort out his washing when needed! This doesn’t mean they’re not fun as well, but the necessities of daily life take priority over the play time. So Max has, essentially, about 20 mothers! I’m obviously one (DER!) and as the biological mother the least fun; but beyond that he’s got an amazing crew. On John’s side of the family was first and foremost his Nanny Millie, sadly no longer with us, but his champion, best friend, and often, partner in crime. And hot on her heels are Max’s amazing aunts and my very, very special sisters-in-law Anne, Judi, Rosie, Lucy, Alice and Robin, all of whom have loved Max as their own over the years and gone the extra mile when asked. Thank you, thank you, thank you: words cannot describe how much you mean to Max, and to me. I never dared to think that when I married John I would love his family unconditionally, but I do, and I’m so very lucky that you are who you are. 

Then there is my dear sister Philippa who recently, when Harry was having chemo for his lymphoma, made every Thursday available to collect Max from work, take him to lunch with her and her husband, Max’s fun Uncy Muz, drop him home and generally be his bestie for a day. No questions asked. Philly, what can I say? Life is impossible without these kindnesses.

And Max being Max, of course, has picked up a couple of AMAZING friends along the way who are not family members by blood, but as far as Max is concerned, are family because he loves them. Amanda, who started out as Max’s personal trainer and has become his dearest friend, confidante, carer and just all time angel, I can’t say enough about how much of a role she has played in Max’s life over the past eight or so years. It’s thanks to Amanda and her talented sister that we had such a fabulous powerpoint of photos to show at Max’s 21st. It was priceless, and an indication of how much Max and Amanda mean to each other.

And let’s not forget the lovely Kim. Kimmy, Kimmy, Kimmy, you are such a great girl! From the day Kim met Max, she was smitten; and vice versa. Despite the tyranny of distance with Kim’s travels around Australia, she and Max have never lost touch (thanks, technology; this time. Still hate you, though, when my internet doesn’t work!). I know that these two will be friends forever. Come what may. 

This list wouldn’t be complete without our dear neighbour Gail. When we first moved to Myocum nearly 16 years ago, Max was six years old. At that time, Gail had no grandchildren, and she took Max under her wing as her ‘proxy’ grandson. Max spent hours Frank and Gail’s, mostly sitting with Gail, watching ‘The Wiggles’, eating chips, and generally chewing the cud. He also invited himself into her bed on a couple of occasions at extremely antisocial hours (about 5.30am) when he woke up and fancied a visit. Gail never complained. She loved Max as completely as if he were one of her daughter’s children, and she still does. 

M-Dawg & A-Dawg
M-Dawg & A-Dawg

So, at this point I’m guessing there’s a couple of women reading this blog wondering why they haven’t been mentioned. It’s not because they’re not important; it’s because they are so special I thought I’d leave them to the end (like the cheese and biscuits after a meal; saving the best til last). While I hate to play favourites (and it needs to be said that Max adores all his cousins; male and female – as do I – and each and every one of them has had an integral role to play in his life), there is one in particular who is so very close to his heart that he couldn’t do without her. Amy, what can I say: you are a beautiful soul; you are gold. Creator and manager of the Dawg squad, you are one in a million and we are grateful every day that you are Max’s cousin and leader of his cheer team.

Max and Char Char
Max and Char Char

Finally, of course, we need to talk about my sister and Max’s godmother Charlotte. From day one, Charlotte has been Max’s number 1 supporter; his champion; his gladiator. Over the years, they’ve become great mates: they tease each other; laugh together and play endless rounds of UNO together (as long as Max wins). My darling Charly has been a part of every single one of our family celebrations, and it wouldn’t be right if she weren’t with us for a Christmas or special birthday. Max absolutely adores her, and I couldn’t have managed the last 25 years without her.

So there we are. Having a child with Down syndrome has thrown up all sorts of challenges and shown me the ugly side of humanity, but on the other hand, it has also shown me the richness of human relationships. If Max were a different child, would I have had the privilege of seeing the wonder all these incredible people have to offer? Possibly not. Not because it didn’t exist, but because there was no need for others to ‘go the extra mile’ to enhance the life of someone important to them. What an extraordinary gift! When we are lucky enough to see this generous, kind and compassionate side of humanity, we are rich people indeed. And in my case, my friend, I have Max to thank for that. 

The outstanding men in Max’s life

As I sit here reflecting on Max’s life and why I’m writing this blog, I realise that I’ve overlooked one of the most important reasons why Max is the happy, successful and fulfilled young man he is today. I have touched on this is previous posts: Brotherhood and beyond parts 1 and 2, but I really need to take a moment here to tell you all how exceptional the men in Max’s life are. As you will have gathered, Max is the second of four boys who are all very close together in age, so his home life has always been lively and stimulating as well as noisy and messy. It’s also been incredibly inclusive, largely as a result of the intuition of his brothers who have, almost entirely without interference from me, worked out that Max has some challenges to overcome that they don’t.

Max and his brothers. Best friends always.
Max and his brothers. Best friends always.

 

Having said that, they have never let him get away with nonsense or poor behaviour just because he’s got Down syndrome. When they were very small, they didn’t know that Max had a disability; then when they started to notice the difference in development, it became harder for them all to play together. But here’s what I noticed: without being told or asked, Max’s brothers started to adjust how they interacted with Max, because they observed that he wasn’t quite the same as them. They would get frustrated initially, but then as the time passed, they would change the rules of the game and change their means of communication so that Max could join in. 

As young adults (since they were all about 10 years old) Max’s brothers have had a very clear understanding of what his having Down syndrome means. And without exception, they have embraced Max and his disability and loved him for who he is. They have accepted without question, fear or anger that they each have an important role to play in Max’s life. They respect Max’s resilience; admire his talent; laugh at his great sense of humour; enjoy his idiosyncrasies and quirkiness. They are masters’ graduates of Maxism. They love him because he’s their brother, but more importantly (and this isn’t compulsory as a family member) they like him. 

I was hugely touched recently when, discussing with our boys the terms of our estate and explaining that we had bequeathed a slightly larger portion to Max in order that he might continue to live independently after our deaths (given he has a limited capacity to earn his own living), all three of them said, ‘Of course you should do that. It’s what we expected. It’s what we want.’ Well, what beautiful boys are these. 

And now, while we are away from Max, I see that his brothers are keeping in touch with him via social media; our son Sam who is in Melbourne at university wants to get Max down for a weekend to stay with him; our eldest son Harry had Max stay with him in Sydney last year at his ‘bachelor’s pad’ where they stayed up talking most of the night, from what I hear. Louis, Max’s youngest brother, has been away travelling most of this year, but recently they chatted on messenger and the banter was just as cheeky as it was eight months ago.

Max & John. Or donkey head and gorilla face.
Max & John. Or donkey head and gorilla face.

And then there’s John. I can’t say enough good things about John and his amazing relationship with Max. Most of it stems from John wanting to revert to childhood, so they call each other names like ‘donkey head’ and ‘gorilla face’, but Max just adores John. Much as it pains me to admit it, because I carried him, gave birth to him and spent the first 15 years or so of his life being his preferred parent, I am no longer ‘the one’ for Max. It’s all about John. In fairness, John deserves the adulation; he’s an exceptional father to all our boys and to Max in particular. They just get along together so well. It’s a joy to see father and son in such great harmony, and for Max I think John is his best friend. 

So this post, my friend, is less about Max and more about the incredible men in his life. He is a very, very lucky young man to have such sensitive, caring, strong and principled brothers, and such an amazing father. I know the old saying goes that it takes a village to raise a child; well yes, a village would have been grand, but under the circumstances, I’ll take the family. Love all five of my ‘boys’ more than I can say. Lucky, lucky me.

An introduction to Maxism: for the beginners

This post is purely for the joy of Max and how he makes us all laugh. His honesty, lack of inhibition and total lack of an ‘inside voice’ make for fantastic comedy, especially when in church situations. This has all come back to me after the last few weeks in Europe exploring beautiful churches: in fact it was Max’s youngest brother Louis who reminded me of these stories and urged me to share them. Let me give you some background: Max’s dad John was raised a practising Catholic; I was raised as a baptised Anglican who never went to church. My grandfather on my father’s side was an Anglican priest, so my father had a religious childhood, while my grandmother on my mother’s side was Italian and a devout Catholic, so my mother was more or less raised in a convent school. Sounds complicated? It was a bit, but basically it meant that when John & I got married it seemed reasonable to do so in a Catholic church as it meant so very much to John’s parents and was familiar to my mother (my father had died many years earlier). Further, when we had children we decided that we would have them baptised as Catholics for much the same reasons but have always allowed them to choose their level of involvement in the church.

Despite John’s lack of involvement with the church since leaving home, when our boys were born we decided that we would enrol them in the local Catholic school. There was a number of reasons for this: it was an excellent school; my clever, caring and exceptional sister-in-law Anne was a teacher there, and in spite of my misgivings about religious doctrine, I really loved the atmosphere and attitude of the school which embraced diversity and encouraged care for others. Please don’t get me wrong here: I know that most schools have the same philosophy, secular or parochial, but this school seemed to me to be special. (Just to be clear: this is NOT the school I wrote about in my previous post). Anyway, as the years went by we took the trouble to take our boys to Mass from time to time given that this was a part of their school curriculum. It was also a very special occasion for my dear parents-in-law Millie and Len to go to church with all their family. And that in itself made it worthwhile: for me, at least, if I weren’t there for the faith just to see the joy on their faces was priceless.

So Max, like all his brothers, completed all the sacraments so that he could fully participate in any Catholic Mass. However, his attendance at church was sporadic as, for us, it wasn’t a high priority. This meant that he wasn’t completely on top of all the rituals that take place in a regular service, which led to a couple of absolutely hilarious incidents which are so typical of Max that we need to introduce a new word into the English language: Maxism. 

A Maxism: How to improve church music with percussion and style!
A Maxism: How to improve church music with percussion and style!

The first occasion I can remember blushing and giggling over a Maxism was going to church when Max was about five, and when the priest emerged from the sacristy, Max turned to me and asked at the top of his very loud voice, ‘Is that God?’ Well, why not? He looked important enough. But that was nothing compared to what came later. I remember Millie coming to stay with us over Easter one year along with a large number of the McAuley family and we all arranged to go to Mass on Easter Sunday together. Max would have been about eight at the time. He sat with Millie (his beloved ‘Nanny’) on the front pew and proceeded to take his shoes off. As you do. Anyway, Millie was pretty upset and told him to put his shoes back on immediately. 

‘No, Nanny,’ said Max. Millie was not impressed. ‘Max, put your shoes back on now,’ she insisted. ‘No, Nanny, no shoes,’ replied Max. ‘Max,’ said Millie again, more firmly this time, ‘Put your shoes back on this minute.’

Just when it looked like we were approaching a stalemate, my beautiful, angelic and innocent young boy replied, ‘No shoes, f**k off Nanny,’ in a completely conversational tone as though he’d asked her how the weather was. I have to give utmost credit to Millie (who must have been shocked beyond belief) in that she completely bowed out of the argument at this point and carried on as if nothing had happened. However, the entire row of seats behind her and Max which included most of my brothers and sisters-in-law was shaking with silent laughter, and we still giggle about it today.

 

Max and his dear friend and beloved 'Nanny' Millie.
Max and his dear friend and beloved ‘Nanny’ Millie.

(Isn’t it one of those strange truths that children learn to swear so easily? In Max’s case, I think he learned it – like my other boys – from older children either on the school bus or in the playground. One of the other incredibly unfair truths in Max’s case is that his articulation has always been quite poor, which means it’s often difficult to understand him. Except when he’s swearing. Then his articulation is pretty well perfect and there’s no question about what he’s saying!)

And then there was the time we decided it would be a good idea to take the boys to a little childrens group held in a tiny side chapel, led by one of the sisters, during the Homily. Seemed like a grand idea until Max broke wind, brought tears to everyone’s eyes, and the entire group sought sanctuary either back in the church (in the middle of the Homily) or outside in the car park. 

The most recent occasion was when we went to church again with a large group of McAuleys and Max decided he’d like to receive communion. So he joined the line, did everything right in taking the bread, popped it in his mouth and promptly spat it out again saying (in his absolutely not indoor voice) ‘Yuck, me no like that!’ Once again, we were all reduced to silent, stomach-achingly, tear-producing giggles made worse when John’s lovely sister Judi took one for the team and ate Max’s slightly slobbery, spat out host. (For those of you, like me, who are unfamiliar with this ritual, I should explain that for Catholics the host is consecrated so you absolutely can’t throw it in the bin. No: it has to be treated with respect and eaten. Definitely not spat out. Nor called yucky.)

So, my friend, I’m sharing these stories purely for the joy of them, and because I love how Max puts every situation into perspective. Why shouldn’t he take his shoes off in church? Why would a loving god care if a child wore his shoes or not? And why should he like the taste of the communion wafer? Does anyone actually enjoy it for its flavour, or is it more about what it represents? And with the best of intentions, how could Max possibly know that it wasn’t meant to be tasty, but instead spiritually fulfilling? As for the flatulence, well there’s no excuse really! What I want to say is that I love that he feels free to speak his mind because he is so lacking in inhibition. And I love that people don’t judge him harshly for his unexpected frankness which could be mistaken for rudeness, but is never intended that way (particularly his darling Nanny: God bless you Millie; we miss you more than words can say). I love all his Maxisms. Actually, if I’m completely honest, I just love how Max is Max. There’s nobody else like him, and I’m so proud he’s my son. Farts and all. 

 

 

The good, the bad, and the downright unforgivable: part 3 and final

So here I find myself recounting some dark days in my journey with Max and I still feel my stomach churning, my eyes filling with tears, and my head reeling with the injustice of it all. What happened? I hear you ask. Well, simply put: Max started school. After the delight of our pre-school experiences and Max’s apparent aptitude and ability to integrate, we decided to pursue a mainstream school environment for him as this had been so successful to date. We spent a significant amount of time looking at schools, interviewing principals (they like to think it’s the other way round; it’s not), and generally getting a ‘feel’ for what would be the right environment for our boy. At the same time, we were hoping that he might be able to attend the same school as his brothers, so we needed to consider their needs (which were very different) as well. Anyway, we thought we’d struck gold when we found a school nearby which was small-ish, had lovely, safe grounds and a very supportive principal. We promptly enrolled both Harry and Max and were looking forward to the next few years.

Max after his move to a new school with all his and his brothers' awards on the walls behind him
Max after his move to a new school with all his and his brothers’ awards on the walls behind him

What unfolded over the next year and a half or so was so nightmarish I almost can’t believe it really happened. Once Max was enrolled and before the start of the school year, we were invited to a meeting with his prospective teacher, the principal and some of the other Kindy mothers who’d expressed an interest in being involved in helping Max get settled. We arrived feeling full of optimism and were greeted joyfully by our lovely principal and introduced to the two mums who wanted to help. This was ‘The good’, the really, really good. These two women who had busy lives with families of their own and demanding jobs had volunteered their time to help get Max settled into their school community. They had never met us, nor Max, they just wanted to help because they felt it was the right thing to do. Kim and Leah, if you’re reading this, I’ll never forget what you did for us and I thank you from the bottom of my heart.

Unfortunately, it transpired that the Kindy teacher (who was new to the school) had different ideas and didn’t want anyone in the class ‘disrupting’ her while she settled the children in. This meant that the lovely Kim and Leah were no longer ‘required’ and had, in fact, wasted their time coming to the meeting in the first place. She also informed me that Max would only be welcome in the classroom while there was an aide present, which meant he could only expect a part-time enrolment. Further, she expected me to support him for at least the first term. Well, OK. Not what I had expected, but I thought I could work with it. It did mean that Max was only at school for two hours a day which was far from ideal, but I went along with it being new to the community etc, and really believed we could make it work.

Sadly, things went from bad to worse. As long as I was in the classroom, Max’s teacher seemed able to cope: in other words, I was modifying the curriculum and teaching him myself. Once I stopped attending school with him, things went downhill rapidly. He was still only at school for two hours a day, but whenever I went to collect him, his teacher would be waiting with a litany of complaints about how she couldn’t teach him. His behaviour also began to deteriorate as he was mucking around with the boys in the class (all gorgeous of course, but with some very ‘rascally’ behaviour as one would expect of five year old boys) and just didn’t have the adaptive behaviour skills to know when to stop. This was the start of ‘The bad’.

In hindsight, I should have seen the writing on the wall and done something much sooner than I did. But I still had the ideal of him attending a local school with his brothers firmly in my head and thought we could overcome the difficulties. And to be fair, there were positives. He had the most gorgeous Year 6 buddy Sian who spent every spare moment in the playground with Max and was such a great friend. There was also a fabulous casual teacher, who did some job sharing with his regular teacher, who loved having Max in the classroom and had no problems with him at all. But sadly, none of this was enough in the end.

Max started Year 1, still on a part time enrolment. Sam started in Kindy; Harry was in Year 4. We had a different teacher this year, and I was hopeful that things would improve. Sadly, I was wrong. Our lovely, supportive principal who had stuck his neck out for us over the previous year, battled the school bureaucracy and Max’s teacher on our behalf finally decided he had to quit from the stress of the situation. Phil, thank you for everything you did for Max; we won’t forget you. The new, relieving principal was a very kind woman, but by now we were in injury time. I had suggested to the new classroom teacher that a ‘communication book’ might be a good idea, in which she could write anything she thought I should know about Max’s day at school, and I could let her know anything relevant from home. Well, it seemed like a good idea at the time. What it ended up being was a ‘complaint book’ from the teacher in which she listed every minor incident that had involved Max and could be considered remotely disruptive. 

And then it got worse. Max had befriended a nice little boy in his class and they had become quite firm friends. Then one day I was informed by the teacher that Max was no longer to sit with this boy as his mother had spoken to her and didn’t want her son to ‘learn bad habits’ from Max. This news was like a blow to the stomach. Until that moment I had never, ever felt so overwhelmed by emotion; it felt like a physical illness. I tried to make things right: I spoke to the parent support staff at the Down Syndrome Association of NSW who are always marvellous, and was given the right information about how I should approach this situation. So I took a deep breath, rang the mother, and explained that her son was at no risk whatsoever of taking a retrograde step in his education by befriending Max. In her defence, she was embarrassed and upset, but she didn’t budge. Her son and my son were definitely no longer allowed to be friends. 

But the final straw was what I can only describe as ‘The unforgivable’. I learned from third party information that there had been a class meeting to which all the parents in the class were invited except John and me in order to allow them all to feel ‘comfortable’ about discussing Max without fear of retribution. Can you believe it? I was shocked to the core. The only reason I know this happened is because the aforementioned angels Kim and Leah both left the meeting when they became aware that I hadn’t been invited. Further, they both rang me to let me know what had happened. 

So clearly it was time for me to find a new school for Max. He had started Kindy as a happy, positive little boy with some good skills including a good number of sight words, good pen skills and social skills etc. He left this school with none of the above. Why am I telling you all this? Because I don’t want you to think that we’ve had a dream run. We haven’t. There are always obstacles to overcome. Everyone is capable of making bad decisions, and in our case that was me when I chose to persevere in what was clearly a toxic environment for Max. I also want you know that despite a horrible 18 months when I would come home from school pick-up every day in tears, we found the perfect school for Max in which he thrived. I’m not saying it was plain sailing from then on, but at least this time we, the teachers, the principal and the school bureaucracy were all on the same team.

So here is what I want to say to you, my friend: when the going gets tough (and it will), hold on to the belief that there is a place where your child will excel, be happy and contribute to his community. Even if you don’t find it the first time, it’s definitely there.