Special Needs Consulting

June is my least favourite month and not because it’s the start of winter, although I don’t like the dark, dreary mornings either. (Having been brought up in Zululand, for me cold is anything below 20 degrees!) Both my parents passed away in June, 17 years and 18 days apart, so it’s a very sad time. Every year, during this month, I can’t seem to shake the feeling of impending doom. It’s like I wait for something bad to happen and it’s a terrible way to live. Some people are superstitious about Friday the 13^th – for me it’s June. It’s the only month in the year, where I literally have to cross the days off my calendar; a countdown to my sanity resuming.  Family and close friends know to just let me be. It’s a temporary lapse in positivity, but I know it’s short-lived.

My first two boys were spring babies, born in September and October. I was never that keen on a winter baby, but my husband convinced me that July is a great month to be born in (yes, he’s a July baby!) and it would probably take us a few months of trying for number three anyway. It did not and our third son was given the due date 22 July 2012.

This I could handle. It would be cold and we would have to really bundle up our newborn when going anywhere, but at least it wasn’t June. My other two were natural deliveries and had missed their due dates by mere hours, so I assumed July was a safe bet.

As the pregnancy progressed and my amniotic fluid lessened, I just hoped that we could make it to July. I had bought Disney on Ice tickets for the Sunday, 1 July 2012 and that day was going to be a huge milestone. June would be behind me and I would officially be 37 weeks, considered full-term. It was to be celebrated with a fun outing for the family. Sadly it didn’t go according to plan. I found out on the Tuesday earlier in the week, that a Caesar had to be scheduled. The date was Thursday, 28 June. I was going to have a June baby, slightly premature.

My in-laws very kindly offered to look after our other two and though the news of the early Caesar came as quite a shock, I was determined to stay positive. Packing up the boys was a sad reminder of doing the same thing two years previously, when I rushed to my mom’s bedside but didn’t make it in time (she passed away from cancer, 29 June 2010), but I was grateful we had missed her anniversary by a day. My husband and I went out for dinner the night before and chatted about what lay in store. We were in unfamiliar territory but I was adamant that this was going to be a magical experience. It was the birth of our third son and all that mattered, was that he was born healthy, regardless of how or when he made his arrival.

Nothing could have prepared us for Nicholas’s birth. To this day, I still feel bitterness that this poor little boy had to enter the world under such sad circumstances. I’m not angry at anyone in particular – it’s no one’s fault. But our beautiful son joining our family, should have been a happy and exciting occasion. In addition to the unexpected diagnosis of Down syndrome, shortly after birth, my husband’s uncle sadly passed away later that afternoon. I just kept asking why. Why such sadness felt through the family the day that Nicholas was born? It was so unfair. I felt robbed of a joyous arrival of our son. Thankfully those emotions have faded with each passing year.

28 June has come to be a day of reflection and gratitude, a beacon of light in the month I dread. Jarod Kintz said ‘the year you were born marks only your entry into the world. Other years where you prove your worth, they are the ones worth celebrating’. The words ring so true for me. We have come to know this extraordinary little person that is Nicholas and every day with him, is worth celebrating. And despite not receiving the arrival he deserved, that sadness lessens as the joy he brings to us, fills our heart.

This past Sunday, for Nicholas’s birthday, we went to Disney on Ice, just the five of us. The show has always been a mental block for me – it’s a reminder of what could have been and so I’ve always avoided it. But this year, I feel like we came full circle and it was a very special day. Since Nicholas turned one, we’ve held a birthday party two weeks after his birthday. Not because I wanted to celebrate outside of June (although it’s a bonus!), but because of it being school holidays and many people are away. We still have the Barney party to look forward to next weekend, when we celebrate with family and friends.

We are now finally in July and another month of June has come and gone. It is incredibly hard when you’re in the moment and experiencing the shock of the diagnosis, to really see the ‘bigger picture’. Three years down the line and I see it now more than ever. I can honestly say that one of the saddest days of my life has without a doubt, resulted in one of the best things that has ever happened to me – and that is Nicholas.

 

 

Some expectant parents like the element of surprise and so choose not to find out the gender of their baby. For them, the ‘reveal’ at birth adds to the excitement of the day, while family and friends wait eagerly to hear the news. Is it a boy or a girl? What is the name? Then there are others, like myself, where the gender is known from the beginning, but a much bigger surprise awaits at the birth – the existence of an extra chromosome.

The birth of your child, be it your first or your fourth, should be a momentous day filled with an immeasurable about of joy and excitement. However, with the birth of Nicholas and the diagnosis of Down syndrome thereafter, the day did not quite go as planned. I did indeed feel an enormous amount of love for this little person, as this was the child I had bonded with and whom had been a part of me for eight months. But on the other hand, I also experienced shock, uncertainty and grief.

I grieved the child I expected to have. My hopes and dreams for him were now beginning on a different path, one that had completely caught me off-guard. What I came to realise over time though, is that it is so important to give into your emotions, both negative and positive. And guilt must not play any type of role. Everyone will go through a different process, in order to reach acceptance. I read a quote by Tracey Johnson Buzzeo that sums it up beautifully: ‘grieving the losses is not incompatible with celebrating the triumphs’.

There are two pieces of advice I would like to share with new parents, embarking on the special needs journey. Firstly, when you receive the diagnosis, don’t immediately turn to Google and Wikipedia. Yes, you will find knowledge on the cold, hard facts of your baby’s diagnosis, but in no way can it prepare you or educate you on your baby specifically. Most often than not, you will read about ‘worst case scenarios’ which probably won’t apply to you at all. Every baby is different and every baby with that specific diagnosis, is also different. My husband and I made the mistake of turning to the internet five minutes after the news was broken to us and it was just petrifying. We read that Nicholas would probably have a heart defect, a thyroid problem, have a higher chance of being diagnosed with leukaemia and would spend his last few years on earth, with Alzheimer’s. In no way did this information help us to deal with a newborn, just one hour old.

In the next couple of weeks and months as we digested the news, I focused on reading stories told by parents who had children also born with Down syndrome. And this filled me with hope, because I knew that there was so much joy to be experienced. I realised that it was in the best interests of Nicholas and us as a family, to take it day by day and not worry what could happen in the future. Be aware of the risks, do the necessary check-ups and deal with issues only when they arise. We discovered that Nicholas did indeed have a heart defect and open heart surgery was necessary at four months of age. Thankfully, the surgery was a success and he has been healthy ever since. Worrying about things that may never actually happen, is just cause for unnecessary stress and anxiety.

The second piece of advice is don’t compare your child to anyone else. We are all unique, each with our own set of imperfections and abilities. Yes, a child with special needs may take longer to reach certain milestones than his or her peers, but putting pressure on them and on you as a parent, really doesn’t help matters. There is no trophy at the end of the day for the parent whose child is ahead of the pack. Celebrate those achievements, big or small, when they happen. The ultimate reward is sharing in your child’s joy, when they accomplish something that they have worked so hard to achieve.

 

It was National Siblings Day last Friday, 10 April. This is primarily celebrated in the United States, but is gaining recognition internationally. The founder, Claudia Evart, created the day to honour her brother and sister, who both died at an early age. As she states, ‘the siblings bonds are life-long relationships, usually lasting from cradle to grave. It is usually the longest relationship of a person’s life and typically much longer than a mother’s and father’s relationship.’

Another story that stood out for me this past week was 21 year old American, Jordan Spieth, winning the Masters on Sunday. He has a 14 year old sister who is special needs. Last year, he was quoted as saying in an interview, ‘Ellie certainly is the best thing that’s happened in our family’. Jordan also states on his website that ‘being Ellie’s brother humbles me every day of my life.’ When I read that, I was filled with hope and it really touched me, as I completely understood. I don’t have a sibling who is special needs, but I have the privilege of witnessing every day, the extraordinary bond of my three boys.

     

When Nicholas was born with Down syndrome and we became a family of five, I was met with many questions from people:

• Have his brothers accepted him?
• Is Nicholas more work than the other two?
• Have you told his brothers that they’ll be looking after him for the rest of his life?

These are all valid questions, but nothing I’ve felt I have had to worry about. Yes, the first six months after Nicholas’s birth was hard for the family. His brothers only met him when he left the NICU after three weeks. They then had him home for ten days, when he went back into hospital with RSV, followed by open-heart surgery when he was four months old. In that time, we tried to maintain some form of unity, taking turns going to the hospital for visiting hours. It was important to establish a sense of normality until Nicholas came home and we were finally under one roof again. When he eventually left the hospital, he was like any other baby who needed to be fed, changed, soothed and most importantly, loved. The boys immediately took to their roles of protective older brothers and were so excited to have Nicholas join the family.

As Nicholas became a toddler, I didn’t find myself having to focus all my time and energy solely on him, thereby neglecting the other two. We’ve also been incredibly luckily that he’s been relatively healthy. He now goes to school three times a week and the other two days are busy with therapy. The afternoons are then spent on his brothers’ homework, extra-murals and sports matches. All children initially struggle learning to share, especially their parents’ time, but as I keep telling them, ‘I am only one person.’ I simply do the best that I can. Each one gets individual attention when possible, but thankfully they also just love being together. For them, their best time is when the five of us are doing things as a family.

Nicholas is a great source of amusement for his brothers and they really draw such joy from his happy disposition and mischievous innocence. The three of them will spend hours playing with each other, with just a couch and some pillows as props. Being all boys, it sometimes tends to get out of hand (and Nicholas definitely thinks he’s older than he is!), but his brothers are very gentle with him and he in turn just adores them. We’ve never felt the need to sit the boys down and explain to them that Nicholas will need looking after for the rest of his life. To be honest, we are very positive about his future and what he could one day accomplish as an adult. Who knows, he might be looking after all of us, instead of the other way around!

I see the look of pride on the boys’ faces, when I bring Nicholas to school with me and all the children gather around him. Nicholas was born with a double thumb on his right hand, so essentially has eleven fingers. This has brought on much curiosity when all the children first spotted it and they love to see it and ask about it. Two years ago, my eldest was in Grade R when his teacher told the class, ‘isn’t Nicholas lucky? He gets to count to eleven!’ Needless to say, there were a few jealous classmates, not content with only ten digits.

I’m not naïve. I know that Nicholas, who is not yet three, is going through that cute and adorable phase. It’s hard not to be drawn to him with that grin and sunny personality. But I know the boys might be exposed to bullying down the line and unfortunately, it doesn’t take much to be teased. You wear glasses, have skinny legs or are simply born with red hair. I just hope that their love and admiration for Nicholas will give them the courage and strength to stand up for themselves, and for Nicholas, in those situations. I also know that there will be times when they might feel embarrassed by their little brother, but that’s all part of growing up. Just like the fact that siblings fight. And they may go through stages of loving and loathing throughout their relationship. My sister was a sulky teenager and I in turn, was overprotective and bossy over her. I was the older sister only by twenty-one months, yet I acted as if I was her mother. The teen years were a strain on our relationship, but it passed and we couldn’t be closer. When we lost both our parents by our early thirties, we leant on each for guidance and support, not because we were taught to, but because that’s what siblings who love each other do.

I don’t worry about the future of my boys. I am so grateful that Nicholas has his two big brothers who will always be there for him. The love they have for their little brother will forever be entrenched in their hearts. And in turn, I’m so grateful that they have Nicholas in their lives. They will learn about difference and acceptance from an early age. These life lessons will help them grow up to be kind, caring and compassionate young men. I believe that they will continue the journey of changing people’s perceptions and just simply loving Nicholas for exactly the person he is, extra chromosome or not.

 

When I sat down to write about World Down Syndrome Day, different thoughts popped into my head. I envisaged starting with the origin of this day, for example, explaining why 21 March was chosen and ramble on about the 3^rd copy of chromosome 21. But that sounded too scientific. Then I thought about mentioning that the Empire State Building will be lit up to commemorate this special day, but we’re not American. I could also state that it’s the 10^th anniversary of World Down Syndrome Day, but as Nicholas is 2 years old, it hasn’t really held much significance for us until 2013.

So I decided to rather write about what this day means to our family and to especially Nicholas. What we’ve always wanted, since we found out after birth that Nicholas had Down syndrome, was that he’d be accepted for who he is. We wanted him to be defined by his character, his personality and not by that extra chromosome. Right from the beginning, we hoped to raise Nicholas as we do his two brothers and be able to give him every available opportunity. Yes, we know that there will always be limitations placed on him – no one walking this earth is perfect, but don’t we all just want to be given a chance?

Too many times, we focus on the things we can’t do and forget about those we can, our unique abilities that make us who we are. So today, I don’t want to think about the milestones Nicholas hasn’t yet achieved, his next medical check-up or his next therapy session. I want to honour and celebrate the person he is right at this very moment, a true blessing in our lives. I cling onto the hope that through the awareness of World Down Syndrome Day and everyone involved in acknowledging these extraordinary people, Nicholas has a very bright future ahead of him. There is still a long road ahead and many hurdles to overcome, but I know that his dreams and aspirations have the possibility of coming true. It’s what every parent wants for their child and Nicholas is no exception.

Happy World Down Syndrome Day!