Special Needs Consulting

(By Adam Schoeman, aged 10, oldest brother of Nicholas)

You have probably read some of my mom’s blogs from her perspective of Nicholas being her son, but you may have wondered what his siblings think of him and what it’s like for them, with him being their brother. Well, that is the exact reason I am here: to tell you what it’s like having Nicholas as a brother. When I was 5 years old and my parents briefly explained to me what Down syndrome or Trisomy 21 was, I honestly had no clue what they were telling me at all. But now I’m 10 and I think I might know even more than my mom about it. Just so you know, if you want to find out how other children live with their siblings with Down syndrome and other disabilities, buy the book “Views From Our Shoes” by D. Meyer. Anyway, instead of telling you about all the scientific evidence, discovery and whatnot, I am going to tell you what Nicholas means to me and how he is treated just like any other child in my family!

When I first met Nicholas, I thought of him as just like any other baby I had seen. As I got older though, I began to notice how he seemed to be taking a bit more time learning and that he appeared a bit smaller and lighter than expected (at least he will be able to do the limbo easier!). Now Nicholas is 5, and I don’t think of him as anything short of unique. Like any other child, he has his talents and weaknesses, fears and strengths, ups and downs. But life is like a rollercoaster, full of ups and downs and twists and turns. Every time we fall down, we get right back up again. And if a track breaks, we mend it.

If you read my mom’s blog Cupcakes & Scrambled Eggs – A Day of Celebration, Nicholas likes to do things a bit differently. Like, he enjoys having egg with fresh pancakes and cinnamon and likes to make parodies of songs replacing the words with the names of his family members, friends and even teachers! Having a brother with Down syndrome has made my life a little bit different. And I’m not just talking about karaoke competitions and his birthdays! He has a bit of difficulty speaking and sometimes my family does not quite understand him. Every morning Nicholas wakes me up, I help him get dressed, we fetch his (technically my dad’s) iPad and his ABC puzzle, I unlock the passage door and he watches educational videos on YouTube and then he has breakfast. I think I have heard the alphabet song 50 times! Nicholas also goes to a special school which gives him a bit more help. So the school my parents chose was the Talk Shop, a very good remedial school for children who have trouble speaking. In the holidays they hold a holiday clinic that Nicholas, Ryan and I always go to.

By the way, have I mentioned that Nicholas loves dancing? He is like a small battery that never runs out of energy. Some of his dance moves are the bum shake, the robot and jumping in the air shaking his hands. His favourite songs are “Thunder” by Imagine Dragons, “You’re Welcome” from Moana (2017) by Dwayne Johnson, “Roar” by Katy Perry, “Hot Dog” by Mickey Mouse, “Shake It Off” by Taylor Swift and finally “Hakuna Matata” from the Lion King (1995). Having Nicholas as a brother so far has been like a rollercoaster that goes up, up up, down, up, down, up and so on. Someone is yet to be as energetic and playful as Nicholas and I cannot live without him! He is the best little brother ever and I love him to the edge of the universe (the universe is always expanding so my love will never end!).

Thank you, Adam Schoeman signing out!

For many, Valentine ’s Day is the day one receives flowers, chocolates and cards. This year in particular, South Africans will remember it as the day Jacob Zuma finally resigned as president. But for me, it will always hold a very different memory – 14 February 2018 is the day I was diagnosed with breast cancer.

I turned 39 at the end of January. A mammogram is something you always hear of as a woman, but usually we get told to start having them at the age of 40. It was at the back of my mind to ask my gynae about it when I had my annual checkup in May. I had felt no lump, nor was I concerned, but I think having a special needs child, you are forever dictated by routine checkups. Then a friend of mine told me that she had discovered a malignant lump in her breast (our birthdays are a couple of months apart). I mentioned to my husband that night that maybe I should just go get checked out. His reply was yes, it would at least give me peace of mind.

So that Friday, I found a nearby breast screening centre and made an online enquiry before the school run. They phoned me an hour later while I was driving and asked if I could come in that morning. My only concern was the length of the appointment, as I had to fetch my daughter at 12h00. They assured me that a mammogram took less than half an hour.

So in I went, on my own, not knowing my life would yet again be turned upside down. A lump was found, a biopsy done and the radiologist informed me that it was very likely malignant. We would have to wait 3 to 4 days though to confirm the diagnosis. Now I’m not in any way comparing Down syndrome to cancer, but in those moments, I was transported back to Nicholas’s birth. You get caught unaware and a combination of shock, disbelief and devastation overtakes you. How can this be happening? In both cases, we had to wait days for the lab results. Both times though, my gut feel told me that the results were positive – Nicholas had Down syndrome and I had breast cancer.

Last week was a whirlwind of appointments. I found out that not only was the lump in my breast malignant, but that the cancer had also spread to my lymph nodes. It’s an aggressive form of cancer, but thankfully caught very early. The breast specialist wasn’t surprised I hadn’t felt the lump. It’s that tiny. I’ve since had a CT scan and the rest of my body is clear. I’ve met with the oncologist and will start chemotherapy next Monday, for 6 months, followed by surgery and radiation.It’s going to be a tough year but my prognosis is very good. My hope was to be finished treatment by my 40th birthday in January, but I’m assured it’s very likely that I’ll be done by Christmas.

Who knows what would have happened if I’d waited until May to have a mammogram, or worse yet, when I turned 40. My friend’s news was the nudge I needed and for that, I am forever grateful. One of the radiologists I met, said that they are seeing so many women lately with breast cancer, in the 35 to 40 year range. If you are reading this, you are that age and you have not yet had a mammogram, book today! Maybe this is your nudge!

I’m feeling positive and I know I can get through this. There will be good days and very bad days, but I will keep my eyes on the finish line. 5 years ago I added ‘proud special needs mom’ to my repertoire and by Christmas, I’ll have a new one to add to the list – breast cancer survivor.

The number five has been floating around in my head this week and for good reason. Nicholas turned five in June this year, today is the 5^th day of November and it’s exactly five years ago that he had open-heart surgery. A congenital heart defect is one that affects the structure of the heart and is present at birth. It is the most common birth defect and nearly half of babies born with Down syndrome, are affected. Nicholas was one of them. When your baby finally enters the world, you expect him or her to be examined by a paediatrician. But having a cardiologist perform tests on your baby when they are only forty-eight hours old, is definitely something no parent anticipates.

I remember the morning of Nicholas’s surgery so clearly. Seeing our little four month old boy wheeled into theatre, was a gut-wrenching experience. All you want to do is protect them, but the situation is out of your control. You’re handing over your child and all you can do is wait. My other sons had been under general anaesthetic previously, but a twenty minute grommets’ insertion was a far cry from open heart surgery. And even then, it was very scary letting your child go, if only for a minor operation.

The six hour wait was agonising but we were thankful for the constant SMS updates from the anaesthetist. We never thought we’d be hearing the words ‘bypass’ in conversation regarding our baby, but we trusted that Nicholas was in the best possible hands. He was a fighter and we just had to stay hopeful and positive.

After a wait that felt as if I’d aged ten years, we were informed that the surgery was successful and that Nicholas had been taken to the cardio-thoracic ICU. We had had experience with the neonatal ICU in the past. He spent the first three weeks of his life in there and then another two weeks for RSV, only ten days after finally coming home. But nothing could’ve prepared us for this area of the hospital. The patients ranged from young to old and you knew all were dealing with life-threatening situations. It was a very sombre place to be but the nurse patient ratio was one-to-one, so we were comforted by the fact that Nicholas was receiving first class care.

After hearing that Nicholas was out of surgery, we had to wait awhile before being allowed to visit, as he was heavily sedated. That first glimpse of your baby attached to so many tubes and wires, with a large vertical bandage on his chest, indicating where they had cut him open, was so difficult. All we could do was focus on the positive. They had managed to repair the holes in his heart and we had to believe that ‘time would heal all wounds’. We would keep visiting him, would keep telling him how much we loved him and when he was ready, we would take him home.

One of the nights, waiting to go in and visit him, sticks out clearly in my mind. The alarm suddenly went off and the ICU went into lock down. No one was allowed to go in. It was terrifying, as all the visitors waiting didn’t know for whom the alarm sounded. Someone was in distress and all we could think was, ‘is it Nicholas?’ Thankfully, we didn’t have long to wait for an answer, as his nurse for the night came out and told us that he was absolutely fine. What a relief!

Bringing Nicholas home was such a happy day, but also quite a nerve-wracking one. We were almost too scared to hold him, for fear of hurting the wound. We had some days where he just cried and all we could do was comfort him as best we could. I was petrified of burping him as I’m sure his little chest was in pain. Nicholas will never remember that whole experience and for that we’re very grateful, but it was also amazing to see how resilient and brave he was, despite being so tiny. Day by day his chest started healing and our fear began to subside. He is now just left with a scar from his ordeal and our own hearts can barely contain the love we have for him.

As a parent, you never quite know what you can handle until you are thrust into a situation that involves your child. There is an inner strength in all of us that becomes apparent when someone you love, more than life itself, is under threat. I am so thankful that five years ago, Nicholas’s heart surgery was successful. For now, his heart is healthy and only annual cardiologist check-ups are necessary. Going through such a traumatic ordeal really puts things into perspective and I am deeply saddened to think that there are many families out there who unlike us, never got to bring their little ones home.

 

“25 to 30 children are born with a congenital heart defect in South Africa every day. 25% of them will need life-saving intervention in the first weeks or months of their lives. Only 40% will receive it”                                                    –   www.heartkids.co.za

 

 

 

 

                                                                                                                                        

 

 

We celebrated Nicholas turning five last week and what a happy occasion it was. It was a day filled with all of his favourite things. He received alphabet-themed presents, ate cupcakes for breakfast, watched Cars 3 at the movies with his brothers and ended the celebration by tucking into scrambled eggs for dinner. A very happy (and full!) little boy went to bed that night.

For me, the remarkable thing was that for the first time on Nicholas’s birthday, I didn’t relive his birth over and over in my mind. Don’t get me wrong, it’s not that with time I’ve forgotten. I still remember every detail and feeling that day. I remember driving to the hospital at the cold crack of dawn, listening to Florence + the Machine. I remember the blinding lights and the sterile smell of the theatre room as they wheeled me in for my Caesar. I remember feeling like my heart had just stopped, when the paediatrician came into the recovery room to tell us she suspected Down syndrome. And I remember all the phone calls and visits from family and close friends, me reassuring them that everything was going to be ok, although I didn’t have a clue what the future held for us and our little boy.

I can say without a doubt that the day Nicholas was born, was one of the worst days of my life. And I don’t feel ashamed or guilty saying that. The day wasn’t actually about him. In no way did it involve the celebration of welcoming our son into the world. It was all about blood tests, overwhelming Google research, insensitive comments from medical professionals and that gut-wrenching feeling of ‘what now?’ With just a few words, hopes and dreams were shattered. But by slowly giving into all those emotions, an acceptance of a new reality set in. Going forward, I chose to celebrate Nicholas’s life and not his birth. And I wake up each morning feeling extremely grateful.

I can’t believe Nicholas is now five. It feels like yesterday that I held this tiny four-week prem baby in my arms. The age of five is quite a big deal. It’s half a decade! I was looking at him the other day thinking ‘he really is a proper little boy’, my baby and toddler no longer. And on his birthday, I didn’t compare him to other children the same age. No, he doesn’t speak as clearly and yes, he’s still in Huggies pull-ups. But my Nicholas is now saying three-word sentences, chewing solid food and sipping through a straw. Such an achievement! If these are the milestones he conquered at the age of four, I can only imagine the amazing things he’s going to accomplish whilst being five.

And so I say to any parent perhaps having just gone through the birth of a baby with special needs, or maybe recently been given an unexpected diagnosis along the way, take heart. Yes, you will feel an overwhelming flood of emotions, be it sadness, anger, grief or just plain shock. Those feelings will never go away, but the all-consuming love you have for your child, will dilute them. With time, that day won’t be a reminder of how you felt your heart breaking into a million little pieces, but rather how this little person stole your heart and how you possibly couldn’t imagine a life without them, just the way they are.

‘The only cure for grief, is to grieve’  – Earl Grollman

Exactly eleven years ago to the day, we lost our first baby. I miscarried on a flight from London to Johannesburg, when seven weeks pregnant. A miscarriage is generally defined as a loss before twenty weeks gestation, with most occurring in the first trimester. The tricky thing with that, is that most of the time you haven’t told many people of the pregnancy to start with. When you then lose the baby, often the mourning is done silently.

In April 2006, having lived in London for just over nine months, we discovered I was pregnant. In the UK, if part of the public healthcare system, you only have your first scan (the booking appointment) at eleven weeks. As it was very early on, we only told our close family the exciting news and we couldn’t wait to celebrate with them. Luckily we were visiting at the end of April after attending the wedding of friends in Cape Town.

We arrived at the airport on 26 April 2006, after a busy day at work. We both were feeling exhausted, but happy to be flying home. Just before boarding our flight to Johannesburg, I quickly went to the bathroom and that’s when I saw it – blood. I told my husband, I phoned my mom and we found an airport staff member who was very helpful. She called a nurse and when the nurse arrived, she explained that there was nothing much they could do except advise me not to fly. However, if I was miscarrying, staying put in London would not prevent it from happening. We decided to carry on with our trip to South Africa. If it was going to happen, we needed to be with family during the difficult time.

So we boarded the flight and headed for Johannesburg. Two seats were organised for me, so that I’d be able to stretch out and attempt to sleep. I wasn’t very successful though. I must have gone to the bathroom every twenty minutes during that eleven hour flight. I started losing hope. By the time we landed, I was bleeding heavily and we knew we had lost the baby. Somehow I managed the two hour flight from there to Cape Town, but by then I was in agony. The cramping was unbearable. We rushed off to the nearest hospital where they saw me immediately. By now, we had spoken to our parents and they knew the sad news.

I had an ultrasound, the doctor took a tissue sample and also did blood tests. Within twenty four hours, the miscarriage was ruled as ‘complete’ and no ectopic pregnancy detected. Over the next week, we received plenty of support from our family before heading back to London. Life returned (almost) back to normal. Being at work was fine as no one knew a thing (regarding both the pregnancy and the miscarriage). It was very emotional for me about a week after though, when my boss told me that his wife was sixteen weeks pregnant. I smiled, said congratulations and joined in on the baby talk, but deep down inside my heart was breaking. Why did it happen to us?

We were told that the body recovers very quickly after a ‘spontaneous miscarriage’ and thankfully there had been no complications. We could start trying again. So we decided to go for it although deep down, I probably knew I wasn’t ready. But there was one big reason for not waiting. My mom was battling cancer and the prognosis wasn’t good. She needed to be operated on and I started thinking that there was a good chance we could lose her soon. I really wanted our future baby to know one maternal grandparent.

I had a period soon after and then nothing for four weeks. But unfortunately the circumstances surrounding the pregnancy anticipation were far from happy. My mom took a turn for the worst while in hospital and we immediately booked flights to fly straight to Durban, South Africa. All this happened on 11 June, the thirteenth anniversary of my dad’s death. She had to be resuscitated, but clung on with everything she had. My mom was in a coma when we arrived at the hospital, but every day from then on, she started showing some improvement. During this time, I secretly did a pregnancy test, as my period still hadn’t arrived. The test was positive. But we didn’t feel the excitement we had previously. The emotions were a mixture of fear, anxiety and sadness as a result of what was happening with my mom. By the time I headed back to London, my mom was doing better. Seven weeks after arriving in hospital, she finally went home.

This time, we didn’t tell a soul about the pregnancy. I also didn’t want my mom worrying, while she was dealing with her recovery. We made our first appointment at the beginning of August, when I would be eleven weeks along. Day after day went by and I had my moments of panic and anxiety attacks. I tried to stay positive but it was so hard. Six agonising weeks later, the day finally arrived and we went in for our scan. I then got to hear those dreaded words that were every pregnant woman’s worst nightmare: “I’m sorry but there’s no heartbeat’’. We couldn’t believe it was happening again. I felt absolutely numb. It was like some terrible nightmare where I’d wake up and find I’m still pregnant. The doctor told us that I could have a D&C (dilation and curettage) as soon as possible to remove the foetus, or wait two weeks for the miscarriage to happen on its own (as it had before). We opted for the latter. To this day, I have no idea how I survived those two weeks in silence. We did not communicate with the outside world, besides having to break the news to our families once again. This time there was no exciting news preceding the devastating announcement.

We went back to the doctor after two weeks, as nothing had happened. At this stage, we had to tell the hospital that we were flying home to South Africa permanently, in a week’s time. The doctor told us that I couldn’t fly if the miscarriage hadn’t happened, as it was too risky. So we opted for a D&C, two days before leaving the country. We were supposed to spend our last weekend in the UK in Devon, relaxing and doing some last-minute sightseeing. But plans had to change. My husband contacted the B&B where we had booked in for three nights. He started by saying that we wouldn’t be able to make it, and at first the woman (husband and wife owners) was not very impressed. But then he explained why and she fully understood. They had suffered a miscarriage two weeks before us. It suddenly hit home that we weren’t the only ones out there dealing with something like this, although most of us were suffering in silence.

I had the D&C and two days later we flew to South Africa to start our new life together on home soil. It took six weeks for me to fully recover physically. Emotionally, it was a great deal longer. Looking back, I really should’ve seen someone professionally to talk about it all. We moved to a new city where most people didn’t even know we’d been pregnant twice, let alone suffered two miscarriages. Eleven years ago, social media hadn’t taken over our lives yet. You didn’t know what was going on with people unless you asked them directly. And the topic of miscarriage wasn’t deemed to be appropriate dinner table conversation. If it was ever brought up, I was often met with ‘at least it was early’, or ‘luckily you’re still young. You still have plenty of time to start a family’. It made you almost feel guilty for grieving something you never had in the first place. But what people don’t understand, is that there was the promise. The promise of having a child and becoming a parent, can be all consuming, especially if it appears to be just within your reach. You fall pregnant and in nine months’ time, you should be holding your baby. Then that dream is snatched away.

On the flipside, I’ve had friends who had miscarriages after already having had a couple of children. They get ‘well at least you’re already a mom’ or ‘focus on the family you do have.’ This too doesn’t make the pain go away. You are almost made to feel selfish or greedy, when in actual fact you are mourning the loss of a child, an addition to your family.

Only when my mom passed away nearly seven years ago, did I finally see a psychologist. I was emotionally empty and just couldn’t fake it. I lost the person I spoke to every day, my sounding board. I also had a busy two year old on my hands and a nine month old who wasn’t sleeping due to chronic ear infections. I needed to carry on and be strong for them, but I was hanging on by a thread.

I began seeing someone weekly and I started feeling more like myself again. Just having someone to talk to who would sit there and listen, calmed me and made me feel like I would get through the pain. There would always be sad days, but I knew there would also be days where the sun shone brightly and I’d feel overwhelmingly happy and grateful for what I had.

When Nicholas was born a day before the second anniversary of my mom’s passing, the world came crashing down yet again. But I think because I was already in the throes of therapy, this time I could deal with it head on.  I grieved the child I expected to have but I also knew it was ok to do so. This time I wasn’t going to be silent and keep my feelings to myself. I would allow myself to give in to my emotions and that way I discovered a calming inner strength. Yes, we were given an unexpected diagnosis of Down syndrome and all the uncertainty that goes with it, but Nicholas was thankfully alive and we loved him. Any obstacles along the way, we would endure together as a family. We would keep talking.

Around the time of Nicholas’s birth, I thought a lot about my two miscarriages. Most often than not, a miscarriage is a result of a genetic abnormality. As much as you can blame yourself or go crazy imagining what went wrong, it’s usually completely out of your control. That baby was simply not meant to survive. So when Nicholas came along, with his extra 21^st chromosome, I thought to myself ‘here is our child that was meant to live.’ I do not condone abortion but at the same time I believe in every woman’s right to choose. If I’ve learnt anything during my journey of motherhood, it is that you cannot judge anyone unless you’ve been in their shoes, standing exactly where they are. We were thankfully spared a choice with Nicholas, as it was a birth diagnosis. I just knew that he was meant to be on this earth and he would change our lives in ways I never imagined.

Everything I have been though in my life, has moulded me into the person I am today. One of the most important lessons I learnt along the way, is never underestimate the power of communication. If you suppress your feelings, they will always emerge at some point in time, be it weeks or months later and often with consequences. With grief especially, you need to allow yourself to be sad, angry or just simply curl up in bed for the day. But most importantly, you owe it to yourself to talk about it. Communicating and asking for help is a sign of strength, not weakness and we all need to acknowledge that.

 

For as long as I can remember, I’ve wanted to be a mom and I love being one (you’d hope so, given I have four children!). But let’s be honest, while it is extremely rewarding, it can also be a pretty thankless job. There are days when you feel like you’ve lost your identity as a well-rounded person. You wake up feeling like ‘just’ a mom. Since having kids, there definitely were times where I questioned my purpose in life besides raising and nurturing little people. But then Nicholas came along and his Down syndrome diagnosis soon after. My world turned upside down but when I came up for air and was able to look at the bigger picture, as clichéd as it sounds, I finally found my reason for existence. I was going to educate and create awareness for Down syndrome and other special needs. It was a life I never would have chosen for myself, but I knew it was the right one.

I wanted to help those going through similar experiences and I wanted to create awareness. But along the way it’s easy to lose confidence. Am I making any form of impact? Do people actually need to be educated about accepting and celebrating differences? And then you have a week that makes you realise that there is still so much change necessary in society and yes, you need to do whatever you can to start those small steps towards that change.

Last week on one of my husband’s Whatsapp chat groups, a guy he doesn’t know well, sent a meme that was followed by deathly silence from the group. There was silence because 90% of the participants knew my husband and they knew his son Nicholas. The meme showed a young adult male with Down syndrome stirring a pot and the caption read ‘got a new slow cooker.’ I actually felt sick when my husband told me. Someone must have informed the sender of the inappropriateness, as my husband very quickly received a separate apology. The sender claimed that he just didn’t think. He barely read it and just forwarded it on. And he felt terrible about it. I appreciate the apology, but it’s so hurtful that this kind of joke actually exists. Whether you read it or not, by forwarding it on, you are condoning this behaviour. It made me sad that Nicholas has to live in this kind of world where he can be made fun of, purely for being the person he is.

That was the first incident. The second occurred days later, when I was driving to school. I was switching between radio stations at an attempt at finding a decent song. I eventually gave up and ended up listening to the female DJ explain how her boyfriend had to help her with her cell phone, along with the other gadgets in the house, as she was ‘technologically retarded.’ She laughed and so did her colleague. I still feel angry when I think that there was someone supposedly educated and intelligent, talking to thousands of people on the radio and using the most offensive terminology possible. They have a huge social platform and this is what we are subjected to.

We all just want to find our place in the world, to be included and accepted purely for being who we are. Look at what’s currently happening around us at the moment. It’s not positive. I know I can’t change things on a global perspective. But I can continue writing and talking about what I believe in, and that is the fact that everyone is special and unique regardless of their abilities. No one is perfect, which means we can’t judge others. And teasing, bullying and just downright exclusion is what makes for spineless and weak people. We all have a right to belong. I can’t change everyone but what I can do, is start the change at home with my four children.

My little girl is too young to understand at the moment, but my older boys are very privileged to be growing up and experiencing first-hand what it is like to be part of a special needs environment. They have been caring and compassionate towards Nicholas from day one. And they also get to be exposed to other children with special needs, not just Down syndrome. Being young themselves, they are naturally curious and we discuss it all. I want them to be educated and to realise that we should all be proud of our differences. And those differences are to be embraced, not to shy away from. The other day they wanted to know how a deaf person communicates, so we discussed sign language. Then it was a blind person, so I explained to them about braille. All these things make up who we are. I truly believe the greatest gift you can teach your child is empathy. For me, the person with the high EQ, will go further in life than the one with the high IQ.

My older boys are very lucky to attend a school that celebrates all different races and religions. One of my 7 year old’s good friends is Muslim, so he’s become quite knowledgeable on that particular religion, despite us being of the Christian faith. And my 9 year old is learning about the Chinese culture from one of his Chinese friends. Without knowing it, the boys are learning and embracing others for who they are. That’s where it needs to start and the same thing needs to happen with special needs. Children must be taught from an early age that it’s ok to be different. No two people are alike, even my husband and his identical twin who share the same DNA!

One of my proudest moments as a parent came at the end of last year during the parent-teacher meeting. My eldest was in Grade 3 and his teacher and I sat down to discuss his progress for the year. Being a parent is hard. You do your best, but just like we’re imperfect with flaws, so are our children. On the flipside though, we too all have our individual strengths. And sometimes you get those glimmers of hope in parenting, that indicate that maybe you’re actually doing something right. The teacher said to me that my son was well-liked and respected by his peers. The clincher for me though, was that if there was a child on their own feeling excluded or not part of a group, my son would be the one who would go up to them and invite them to join his. It honestly brought tears to my eyes because that is the type of child I wanted to raise. That is the type of sibling I had hoped for Nicholas. And he’s so blessed to have more than one.

I am going to continue to raise my children in an empathetic environment that is accepting of all races, religions and most importantly, abilities. And I will carry on advocating for special needs. If this post reaches just one person who may previously had not given a second thought when forwarding on an offensive joke, but that now think twice having read this, then I’ve done my small bit. Well, for now anyway.

 

Some people, when they find out they are expecting a baby, can feel disappointment at the gender reveal. Perhaps they have always dreamed of having a little girl and are now carrying a boy. Those feelings might only last until the baby is in their arms, but for some however, the disappointment can result in feelings of sadness and depression way beyond the birth.  They have a healthy baby, yet can’t shake the thought that this is not the outcome they wanted. I am in no way dismissing the severity of these emotions, but it is not something I have ever dealt with personally. Yes, I have suffered loss and when my 3^rd son was born with Down syndrome, I grieved the child I expected to have. But for me, whether I was the mom of boys or girls, it was irrelevant. What annoys me the most though during my continuing journey of motherhood, are the people attempting to chip away at my happiness with ignorant comments on my children’s gender.

I’ve always wanted to be a mom, for as long as I can remember. My planned future always involved children in it. My husband and I met at the University of Cape Town, dated for three years and married at the end of 2004. We worked and travelled overseas for a bit and about a year later, decided that we wanted to start a family. Long story short, it wasn’t as easy as I had expected. We suffered two devastating early miscarriages, but I kept clinging onto the hope that I would one day be a mom. We moved to Johannesburg and about six months later, found out we were expecting again. I was extremely nervous but so excited and this time around, we were blessed with a healthy pregnancy.

We’re not very good at surprises, so we were very keen on finding out the gender. We had to wait until the twenty week scan though, as the little one was very shy. It turned out we were having a boy. Family and friends were very excited for us and gender comments from inquisitive strangers were kept to a minimum. After all, you’re starting from a neutral base. I did get the odd ‘it’s great to have a boy first’ and ‘your husband must be so pleased’ but we were so wrapped up in our own joy, we barely paid attention.

Everywhere you go, a ‘perfect’ family is depicted by a mom, dad, son and a daughter. It’s supposedly what every parent strives for. Look around you – billboards, adverts on TV and in magazines. They’re all smiling with perfectly white teeth. We get told by society that that is what a real family should look like. But think about in this day and age. Families come in all shapes and sizes. Maybe a child has two moms and no dad or perhaps a single parent. And shock of all shocks, you might just have two daughters and no son!

As soon as you fall pregnant with your 2^nd child, the peanut gallery weighs in. If you had a boy first, then they’re all hoping for a girl second time round and vice versa. It’s as if no family is complete without the ultimate pigeon pair. Every father MUST have a son and every mother, a daughter. It’s a lot of pressure bestowed on that unsuspecting child. We found out at sixteen weeks with our 2^nd pregnancy, that we were expecting another boy. And we were over the moon.  We felt so privileged just to be able to have another child. Everyone was generally happy for us. ‘The boys will grow up to be best friends’, ‘Dad is on his way to a four-ball’ etc. We did however get quite a few ‘are you going to try for a girl next?’ comments. I even had people offer me their ‘recipe’ for a girl in case we were going for no. 3. I would just smile and politely decline.

When you are pregnant, there is a 50% chance you’re having a girl and a 50% chance you’re having a boy. For me personally, I felt that if we weren’t prepared for those odds, then we shouldn’t bet in the first place. Being a parent is a huge responsibility and not something to be taken lightly. I also never wanted any of my children to be born into our family feeling like they were a disappointment from the get go. Having three sons, I never want them to think we kept going for that elusive daughter and accumulated a few ‘spares’ along the way!  I come from a family of two girls, so my dad never had a son. He was a keen fisherman and would spend every Saturday morning out on the water. I never for a second felt that he wished my sister and I had been boys. We were loved unconditionally and I felt that love every day we were privileged enough to spend with him.

If you really want to be in the centre of a gender debate, try having your 3^rd boy! I couldn’t actually believe the 2 cents worth I got from passers-by who didn’t know me at all. I remember shopping one day and a woman noticed I was pregnant. She asked me what I was having and I said it was a boy, my 3^rd one. That was me asking for trouble. Maybe I should have just kept my mouth shut? But obviously I was excited. She actually said to me ‘shame, every mother needs a daughter’. Seriously?! I was so grateful that I was pregnant with another baby and blessed with another boy. Immediately I felt defensive, like I had to prove to this woman that actually I was happy. And I was! Another favourite was ‘what sins are you paying for?’, as if I was being punished for having a 3^rd boy. I even had a few moms of two sons comment ‘and that’s why I won’t have a third – it’ll be another boy!’ My sister dealt with similar reactions but on the other end of the spectrum, having had two girls. But this time it was her poor husband who was so hard done by as she had not produced an heir. He had no one to pass down the name. You honestly think we lived in the middle ages!

When we found out about Nicholas having Down syndrome five days after his birth, all the emotions went through me. One of them was anger. It was mostly targeted at those ignorant people who gave me a hard time about having another little boy, when all I wanted was a healthy baby. Yes, it sounds like a cliché, but that’s all I hoped for. I’m not proud to admit it but I actually felt resentment towards those disappointed people who didn’t get the gender they desired, but were blessed with a healthy baby nevertheless. In the end though, we all have our own personal struggles to endure. And we can’t judge or compare. There is always going to be someone who has it better than you and on the flipside, who is less fortunate. I accepted our new and unexpected journey and focused my attention on trying to be the best mom I could be to my three little boys.

There is such a stereotype when it comes to boys and girls. Boys are supposed to be the hooligans who can’t sit still for a minute and girls the quiet ones, who will happily sit in the corner and colour in. I actually joked to my husband one day and said don’t be surprised if we start getting fewer lunch invitations to people’s houses. No one wants 3 ‘crazy boys’ tearing their house apart! I really think it comes down to personality and not gender. I remember once someone early pregnant saying to me, when we had two boys at that stage, that they really hope they have a daughter as they want a child who loves reading and who’d be interested in learning. (I honestly could write a book about the idiotic things said to me!) Adam, our firstborn, has had a nose in a book ever since we can remember. His obsession with the solar system started around three and his love for facts has just grown from there. He literally is a walking encyclopaedia and I sometimes have to sneak off and Google the question he’s just asked me because I literally have no idea how to answer it!

What makes me the most proud though, is my boys’ kind and empathetic nature towards others. They show such love for their baby sister and their younger cousins. They just really enjoy the company of little ones and in turn the little ones look up to them and feel protected. I have no doubt that my older two have only benefited from having a brother with special needs. They’ve learnt from an early age that everyone is different and we need to embrace those differences. When people comment on my boys’ gentle nature, it really fills my heart with pride. So yes, they can be very busy and they do give me a few grey hairs at times, but to put them in a box and label them a certain way, would really not be a true reflection.

We took a long time in deciding whether to have a fourth child. The desire was there, but we had a lot of other factors to consider. In the end, we went with our hearts. The boys were so excited at the prospect of another sibling and we couldn’t wait to add to our family. Due to Nicholas having Down syndrome, I did the panorama blood test to rule out any chromosomal abnormalities. I didn’t want to be caught off-guard again. This test would also tell us with 100% certainty, the gender. It was quite a shock to find out we were having a girl. I just naturally assumed that it was another boy, as I didn’t know anything else. I’d even picked out a boy’s name (not easy when you’ve already used three of your favourites!). We told family and close friends that we were expecting around thirteen weeks along, but kept it relatively quiet until we had the blood test results. We then only really went public once we knew the baby was doing well and we knew the gender. I just wasn’t up to hearing everyone’s preference and I felt fiercely protective of her before we found out. Obviously when you have three boys, no one is going to say to you ‘I really hope it’s another boy!’ And that irritated me, because I would have loved another boy. I think because we already had three boys and one was special needs, I was very sensitive to subjecting another child to everyone and their opinion. I had heard it all before. I wanted each and every child of ours to feel loved and special in their own way.

The boys were ecstatic to be having a sister for the first time and you can imagine the string of comments we received. ‘Your family is finally complete’ and ‘you can now stop having kids’ is what we heard over and over again. Yes, our family was complete – we had our four children. If we had had another boy, I can say beyond a shadow of a doubt that we would not have had another child after that. And that’s not due to admitting defeat. We were a family of six. That’s what we had hoped for and we considered ourselves very blessed. I also have come to realise that people generally mean well and often it’s just finding something to say in the situation. You really can’t take it too personally.

So in March 2016, we welcomed our daughter. When we decided upon her name, Tessa, we found out that it actually meant ‘4^th child’ in Greek. Very apt! She’s definitely our most independent, strong-willed and feisty baby so far. Not sure we’ll ever find her sitting quietly in a corner doing arts and crafts, but more like munching on the crayons! And with three besotted big brothers, she’s probably always going to get her way. I’ve already seen the fiery little temper and I have no doubt there are many power struggles ahead. Who knows what the future holds? She might turn her nose up at ballet and head straight for the cricket bat. In the end, it’s up to her. I’m not going to shove her into a tutu purely because I ‘finally’ have my little girl to play dress up with.

Being a mom of four children, I get asked all the time if the fourth (or even the third, back in the day) was planned. It’s quite a personal question. To set the record straight, yes all of our children were planned. We can’t blame load shedding or lack of anything better to do! With Tessa, even the brothers were consulted about a possible future sibling. But to be perfectly honest, if one of our children wasn’t planned, I wouldn’t be telling you anyway! I wouldn’t want that label placed on them.

At the end of the day, being a parent is a privilege. Some enter that journey easily, others not so much. I’ve known too many couples desperate for a child and fortunately some have been successful via IVF, adoption or surrogacy. Others have not. I can’t even imagine what that devastating emptiness must feel like. Boy or girl, to be able to hold that baby in your arms, is a feeling like no other. I hope that those lucky enough to become parents, although initially disappointed by the gender outcome, find peace and acceptance. A child really is the greatest gift.

“Remember that sometimes not getting what you want is a wonderful stroke of luck.” – Dalai Lama XV1

 

 

‘If a child can’t learn the way we teach, maybe we should teach the way that they learn’   –    Ignacio Estrada

Seeing your child go off to school for the first time, is an emotional and heart wrenching moment for any parent. Your ‘baby’ has now grown up. But for parents of a child with special needs, it’s just that little bit harder. Whether your child was diagnosed after birth, or during pregnancy, there were dreams and expectations that parents were hoping their child would fulfill. Then the dream changed.

When Nicholas was born in 2012 and subsequently diagnosed with Down syndrome, I put his name down at the school his brothers would be attending the following year – Grade R and Grade 000. It was too early to really know what Nicholas would one day accomplish, but we didn’t want to limit his potential. Time would tell and decisions could be made at a later stage.

I’ve always believed in inclusive education. Everyone deserves the right to be educated, to be given a chance, regardless of their ability. But at the end of the day, it is our responsibility as parents, to decide on the path of education for our children. It should never be about proving a point, but rather about our children’s happiness and wellbeing.

A couple of months ago, I spoke to a group of moms from Soweto. They have children with Down syndrome as well as a hearing impairment, ranging from ages two to seven. Many of the children were at a crèche and they were scared of what the future held when they were inserted into the education system. Besides the worry that the teachers won’t be able to address the special needs of the child, other factors such as finances and logistics also play a huge part. My heart breaks for those that have no choice – no ‘special’ treatment for the special child that just gets lost in the system and most of the time, are not able to afford the necessary therapies.

When Nicholas received his acceptance letter to attend Grade 000 in 2016 at his brothers’ school, I’m not going to lie, I shed a few tears. 95% of the time, I go through life not thinking ‘what might have been.’ But when the letter arrived, my first thought was ‘if he didn’t have Down syndrome, this would automatically have been his path’. And I felt sad. And then I moved on. I moved on from feeling sorry for myself and for Nicholas, because no one can dictate their future or the journey of life, no matter how hard you try.

I did consider sending Nicholas with his brothers, if the school considered giving it a try. It certainly would have made my life easier. But I had to look at his needs. Nicholas wasn’t yet talking coherently, not yet potty trained, still not wanting to chew his food and he required numerous weekly therapy visits. There was a school I had my eye on, where he would be able to do his therapy during school hours and where his individual needs would be addressed. It wasn’t a special needs school, but rather a remedial one catering for children with speech and language difficulties. A dedicated team of speech therapists, physios and OT’s work closely together with each child to help them obtain their maximum potential. For me, that environment sounded ideal for Nicholas. He spent 2015 at a Montessori pre-school and thrived, despite being the only child with special needs.  However, he was going three days a week and the other two days were devoted to therapy. For Grade 000, in addition to therapy, he needed five days of school a week.

I grew up in a small town where there was only one bilingual government primary school. Each grade had one English class and one Afrikaans class. Then there was the ‘Special’ class – only one in the entire school; a mixture of grades. Here children with learning difficulties would receive additional assistance, for a subject or two or on a more permanent basis. It was essentially a remedial class, but to the rest of the school, they might as well have been lepers. And so the kids were treated as social outcasts and stuck together. Well, that’s how the memory plays back in my mind anyway, give or take 25 years!

That’s exactly what I don’t want for Nicholas, for him to be treated differently purely due to him not fitting into the cookie cutter mould of ‘normal’. It needs to be about inclusion, not being stuck away as a class of ‘misfits’ because the children need extra guidance and attention, but rather a part of the class just like everyone else. And that extra assistance could perhaps be introduced by means of a facilitator, bridging the gap between teacher and pupil.

Thankfully Nicholas was accepted into the remedial pre-school and we haven’t looked back. He has been so happy there this year in Grade 000 and not a single tear has been shed, well maybe a few by me as he gains independence! Nicholas is making such progress and the teachers and therapists guiding him, are incredibly loving and caring.

I am content that Nicholas is in the best place possible for the next 3 years (the school goes up to Grade R). For Grade 1, we enter a whole new world, but I am not too worried. We’ll find the right fit for him, just as we have done in the past. Will he one day attempt to mainstream? We just don’t know. Time will tell. What we do know, is that Nicholas’s happiness is of the utmost importance and we hope that he continues to be given every opportunity to learn, just like everyone else. I firmly believe that he is capable of great things, both in and out of the classroom.

 

 

‘The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear, is fear of the unknown’   –   H.P. Lovecraft

‘Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable’   –   Sydney J. Harris

Since announcing my pregnancy, I’ve had a few moms of children with special needs ask me similar questions. Was I scared to fall pregnant again? What testing did I do this time around? So I decided to share my journey so far – both exhilarating and terrifying all at the same time!

The desire to have another child was always there. My older two boys are still amazing with Nicholas and they were all for another sibling, which really touched me. And Nicholas in turn has so much love to give and I know another child in the family will learn a great deal from him. But the fear was also there. Nicholas’s birth and subsequent diagnosis really opened my eyes. You always know someone who knows someone, whom that happened to – but it happened to ‘other people’. After Nicholas, I became that other person. I was the person they were talking about when they mentioned ‘a friend of a friend has a child with Down syndrome.’ I envied those couples that announced to the world the minute the pregnancy test came back positive. I could never ever be that confident. I had gone through too much and I now knew too much about the other side of the coin; when things don’t go according to plan. My anxiety extended beyond the normal worries of having enough time for another baby, the financial consequences or how it would change the family dynamics.

Although non-disjunction Down syndrome, what Nicholas has, is the most common type and completely random (i.e. not hereditary), my chances of having a subsequent child with the same diagnosis did increase, given my history and my age (36). It was a lot to think about. Of course I would not change Nicholas for the world and we couldn’t love him more if we tried, but what happened if we were destined to have another child with special needs? My thoughts didn’t just run to Down syndrome. I started thinking maybe our next child would have cerebral palsy or autism. It was one of the most agonising decisions that my husband and I have ever made, but in the end we decided that fear could not dictate our future. We would never regret having another child, regardless of its abilities or disabilities. That child would be loved for being exactly the person he or she was meant to be. On the other hand, if we decided not to have another child, I knew it would be a regret I’d have to live with for the rest of my life. The decision was then made.

Once we had decided that another baby was (hopefully) in our future, we had to discuss how we would go about things, knowing now what we know. With Nicholas being a birth diagnosis, the next time round we wanted to be informed of everything. We just could not handle another shock at birth. It was decided that we would see a foetal specialist at 12 and 20 weeks and follow the NIPT route (non-invasive prenatal testing). A simple blood test is done around 11 weeks and then sent off to the States. The wait is about 3 weeks and your results will then come back as either low risk or high risk for chromosomal abnormalities. Should you come back high risk, the only way then to really detect Down syndrome, is by having an amnio.

Thankfully I fell pregnant quickly and our journey began. I’m not going to lie – although I tried to be as positive as possible, I was a nervous wreck during the first trimester. I really wanted to enjoy the special time, as I was 99% sure it was going to be my last pregnancy. But I also had nagging doubts that would crop up in my mind, particularly at 01h00 in the morning when I made yet another trip to the bathroom! I was so relieved to see the heartbeat at 7 weeks but every bit of joy I felt was also marred by the fact that with Nicholas, we were oblivious to what lay in store and was this in fact history repeating itself?

So it really was a bag of mixed emotions during my 1^st trimester – fear, anxiety, excitement and also guilt. Guilt, because I was hoping that this baby would not be born with an extra chromosome. But what does that mean about my feelings for Nicholas? From day one, I have always said that the Down syndrome must not define him. I don’t believe for a second that his infectious laugh, crazy yet rhythmic dance moves and loving nature can be attributed to his extra chromosome. We love Nicholas exactly the way he is. But at the same time, do I want my 4^th child to be born without special needs? Absolutely! I would hope that this child will be spared any additional hospital stays, open-heart surgery, countless hours of weekly therapy and the limitations and prejudices from society.  I have decided not to feel guilty any longer as it is such a pointless emotion. And in no way does it diminish my unconditional love for Nicholas.

A few weeks after I discovered I was pregnant, a question was put forward by a mom on one of the Facebook groups I belong to. It is primarily an American based group, for parents of babies and toddlers with Down syndrome. One of the moms was thinking about having another child and asked the group whether she and her husband needed to be genetically tested before falling pregnant, given her history and what genetic testing could she do once pregnant. I was quite shocked at the responses she received. This is a closed group and feedback is usually friendly, positive and encouraging. But not so much this time around.

Many people asked her why she wanted to do genetic testing. Was she not happy with the child with Down syndrome that she had been given? What was so wrong with having another one? And my personal favourite: ‘these children are such blessings!’ She replied that the issue at hand wasn’t whether she did or didn’t want another child with Down syndrome. It was about knowledge. With her 1^st child, the diagnosis only occurred at birth (like me) and so with any subsequent pregnancies, she needed to know everything and be prepared. If there was another diagnosis of Down syndrome, then she needed to ensure that she gave birth at a hospital equipped with an excellent NICU unit and a cardiologist, amongst other specialists, on hand.

I completely understood her reasoning as that’s exactly how I felt. I did the Panorama blood test at 11 weeks, which was then sent to the States and the waiting began. The first thing the foetal specialist asked me at my 12 week appointment, was why the Panorama test? (it is a very expensive test, approximately R8 000, and not covered by medical aid). And I told her why. It had nothing to do with termination, but everything to do with knowing. I needed to know if there were any serious medical issues awaiting us and this time I needed to be fully prepared.

The 12 week scan was nerve-wracking but also amazing. I couldn’t believe the level of detail – it finally hit me that that was my baby. I actually had a little life growing inside of me! The appointment couldn’t have gone better and I felt a great sense of relief. I knew that if I could just get my blood test results back, my worries to some extent, would be put to rest.

At 14 weeks, I got the call that my results had come back as low risk. We had been through so much as a family the past few years and I am so thankful for my 3 beautiful boys and a healthy baby on the way. I have since had my 16 week check-up and felt the first little kicks. It doesn’t matter how many times you have experienced that in the past – the feeling is absolutely magical.

My 20 week anomaly scan is coming up next week and I know it’s an important appointment. I will no doubt be walking into the examination room with knees of jelly! But I also know that no matter what, we’ll get through whatever lies ahead. If Nicholas has taught me anything, it’s that you have to live day by day and so many things in life are not in our control. All I can do is take care of myself and the baby and stay positive. This little baby is already so loved and the level of excitement felt in the family, just neutralises my fears. For now, everything is as it should be and that’s all I can really ask for.

‘I think we all have empathy. We may not have enough courage to display it’ – Maya Angelou

We’ve all been there in that situation where you simply don’t know what to say. It’s something you’ve never experienced personally and so don’t know how to go about showing that you care. Every day we’re hearing of people close to us going through hard times – the loss of a loved one, cancer, divorce, the list goes on.

If someone has lost a loved one, often the appropriate statement is ‘I am sorry for your loss’ or ‘I am thinking of you’. When it comes to a celebration, be it an engagement, marriage or birth of a baby, ‘congratulations’ is usually the order of the day.

But what happens when the birth of a baby doesn’t go according to plan and the baby is born with special needs? It was a tricky one with the arrival of our Nicholas. I felt that as more and more people came to hear of the news, they were torn between ‘congratulations’ and ‘my condolences’. It was as if they were divided between congratulating us on bringing our third son into the world and consoling us for him having Down syndrome.

As word spread about Nicholas and he finally came home, we then had to deal with strangers and their input. My favourite is ‘special children are born to special parents’. I don’t feel any more special than the mom raising her ‘typical’ children. I simply do the best I can and every day is a learning curve. Is Nicholas special? Without a doubt, but then again, I consider all my children to be special. I know people are trying to find something nice to say, to somehow justify the diagnosis, but it does get extremely annoying constantly being given the generic response.

I really do believe that people inherently mean well and to this day, I have never had someone say anything maliciously negative to my face about Nicholas. In fact I often deal with people almost forgetting that Nicholas has special needs and say the most ridiculous things. My husband thinks I’m a bit odd, but I almost see it as a compliment. I want to be portrayed as a ‘normal’ family going about things just like everyone else. We don’t hide Nicholas, nor his diagnosis, but the fact that people can see past all that, is a small triumph for me. We must be doing something right!

That being said, it irritates me when I receive comments such as ‘they’re always so happy’, ‘you get to have a baby for longer’ and ‘so they actually can live past their teens?’ I’m always willing to answer others’ questions as I think awareness is so important. But discussing my child’s life expectancy and seeing the incredulous look on their faces when I explain that Nicholas could very well live to his 60’s, does seriously get to me. You’ve only missed the mark by about 50 years!!

My advice to anyone who has a family member or friend with a child with special needs, is to do your homework. The parents will really appreciate your effort of trying to understand and you don’t run the risk of offending them with a comment you deem completely innocent. The last thing you’d want is to imply that something happened during the pregnancy to cause it, when in fact the diagnosis is a result of a completely random genetic abnormality.

Believe me, having a child with special needs does not make me an expert, not even close. I’m merely living the journey along with countless others, all taking it day by day. I’ve always prided myself though on having an above average emotional intelligence and thinking before I open my mouth (often what I think and what I say, are vastly different!). They say that sometimes you only truly understand what a person’s going through when you walk a mile in their shoes. And I’ve had my fair share of heartbreak in the past, which I think has made me more empathetic and a stronger person overall – two miscarriages, the loss of two parents, close family members that have battled cancer and I am now the mom to a child with special needs.

From day one, we saw Nicholas as a baby first and one with Down syndrome second. I am a firm believer that that is how it should be for him and all children with the same diagnosis. However, recently it was pointed out to me, that in my articles and on my website, I was writing ‘Down syndrome children’ as opposed to the correct term, ‘children with Down syndrome’. I was preaching one thing and writing another. I didn’t want the diagnosis of Down syndrome to define Nicholas, yet I was describing him as such. I’ve since made the changes and am making a conscious effort going forward, to not make that mistake again. It is absolutely vital to portray people for who they are as a person and not for their disability.

Some people thrive on the dramatic, others know exactly what to say and when to say it and then there are those who simply take the avoidance route. They shy away from the situation, for fear of saying something inappropriate. That child however, is part of their lives and that family member or friend needs all the support they can get. Actions really do speak louder than words. If you are at a loss of how to show you care, simply drop off a meal for dinner. It will really mean a lot to the family and who knows, your lasagne might just be the comfort they need after a really bad day fielding insensitive questions.