Due to the incredible response to my posts and to mark the end of Down Syndrome Awareness Month I have collated my “myths debunked” and “things they didn’t say” posts into one coherent post.
My hope is that these aid any new parent who find themselves facing a new and often scary World after receiving a positive diagnosis for Down Syndrome.
Please note that all views and opinions are my own.
- Normal is the benchmark – and as a result we fear anything that is different
Luke is by all intents and purposes a typical toddler. He eats, he sleeps, he poo’s, he laughs and he cries, he whinges and whines. He has a distinct personality, an incredible sense of humour and is well aware of what he likes and what he dislikes. He loves twinkle twinkle little star, to high five and strawberries. He dislikes his face being wiped, being told NO and getting him to eat vegetables is an o going struggle. And boy oh boy do we experience suicide hour. Sound familiar? Luke is far more alike to toddlers his own age than different, and his unique little personality is unique to him and not to his diagnosis.
2. So, how did you make Luke?
My favourite of all questions. I’ve actually been asked this a couple of times and each time I ask with a smile on my face if they would like me to give them a Sex Ed lesson. But in all seriousness there is SO much confusion when it comes to what “causes” a person to be born with Down Syndrome. Luke was born with the most common type of Down Syndrome, Trisomy 21. So in short he has an extra copy of chromosome 21 in every cell in his body. This is caused by a random error in cell division during the development of the sperm or egg cell. The key word here is random. This error is complete chance everyone has a 1 in X chance. In my case that chance was 1 in 3500. So in essence we made Luke the same way you made your child, and the same way we made our unborn child, and the same way humans have been making babies for decades.
3. Children born with Down Syndrome are always happy
I was told this a number of times when we found out Luke would be born with Down Syndrome. And yes Luke is happy. I like to claim however it is because Jon and myself are pretty happy, relaxed people and not because he has an extra chromosome. Luke however is not ALWAYS happy. See pic above as evidence. Luke gets sad. He gets angry and he gets frustrated. He sobs so much when he is not happy that little tears roll down his cheeks. Luke gets embarrassed, he sulks and he gets shy. In fact he experiences the whole spectrum of emotions just like a typical person.
4. Really? You didn’t terminate?
This question was asked by a health professional. Although termination rates worldwide vary, it is believed around 92% of people who receive a positive prenatal diagnosis for Down Syndrome decide to terminate. We fell into the 8% who decided not to. For us the decision was easy. This unborn child was ours, he had been given to us to care for, to love and to protect. We made an unconscious pact that we would become our child’s advocate, that we would provide for him a home where he felt nothing but love, pride and a sense of integral belonging. We wanted to attempt to and to continue to change perceptions and understanding so that he could feel that love and sense of belonging far outside of our four walls. We knew that by choosing Luke we were choosing pure joy and my, how right we were. So no, we chose not to terminate, and that my perfect little boy was the best decision that we ever made.
5. All people born with Down Syndrome look the same
Yes, Luke has features that are unique to his fellow #homieswithextrachromies. His beautiful almond shaped eyes, his shorter limbs, his singular palmar crease and his sandal gap toes to name but a few BUT Luke is first and foremost a Roberts. He looks more and more like his Dad every single day and he gets his big blue eyes from his mama. He may have an extra chromosome but his other 46 chromosomes are uniquely him.
6. Will Luke go to school?
There are so many misconstrued ideas about people born with Down Syndrome being uneducable. It is scary to think that in the UK it was only in the 1970’s that children born with Down Syndrome were given the right to education. This seems absolutely crazy. Luke is like a little sponge, he absorbs, he listens, he responds and he replicates. He knows how to play us, and he knows how to get what he wants, he is one switched on little sausage. Luke attends Top Tots with his peers and in January he starts at a mainstream school. We believe that schooling and education is based on each child’s individual needs and as Luke progresses (as with any child) we will reassess his specific needs and re-evaluate when necessary. We have high hopes, expectations and dreams for Luke, just as any parent would for their children and we have no doubt that he will achieve whatever he puts his mind too.
7. People born with Down Syndrome are a burden to their families
Luke has done more for our family in the last 17 months than we could ever have imagined. I suppose prior to Luke’s birth and after finding out the diagnosis it was always about us. What will WE be able to do to makes Luke’s life better, how will WE equip Luke with the right tools to lead the best life that he can. Not once did we imagine how much exactly Luke would do for US. He has brought unfound joy into our home, he has strengthened our relationships, he has taught us more about ourselves than any psychologist could ever have and he has made us better people as a result. We only see Luke’s impact, joy and pureness of heart reaching further into our community and into others’ lives. So no, Luke is not a burden to our family, he is an integral, light filled and meaningful part of it and we could not imagine a life without him.
8. You will spend your life in and out of hospitals and doctor’s rooms
When we received Luke’s diagnosis we were given a plethora of potential health implications. Heart defects, gastrointestinal defects, immune disorders and sleep apnea to name but a few. Our biggest concern was that Luke would be born with a heart defect and would have to have heart surgery once born, which is the case for around 50% of babies born with Down Syndrome. I still to this day count our lucky stars that Luke’s heart was fine, I cannot begin to imagine the fear and worry of having your tiny babe going through surgery. Luke has been a very healthy little chap, and we realize just how lucky we are. We have been to the paediatrician three times, once for a check-up, once for a common cold and once for croup. We have by no means been in and out of hospital and we don’t spend every other week in doctors waiting rooms. We have been blessed with a very healthy and very strong little boy and we vow never take his or our health for granted.
9. Special children are given to special people
Don’t get me wrong I absolutely appreciate the sentiment behind this comment, BUT it really isn’t accurate. I truly believe that special needs children are given to “normal” people, living very normal lives. I believe that they are given to people who are so scared that they have no choice but to be brave. I believe that they are given to people who have learnt to know that imperfection can be perfect, and that pure joy can emerge from the most unexpected of places. And I strongly believe that these “normal” people appear to be special because of the pureness of spirit that they get to witness and surround themselves with every day. So no, we are not special people, we are very “normal” people, we simply happen to have been given a blessing, a pure light which apparently happens to reflect onto us.
10. You will feel alone as a parent of a child with special needs
Believe you me, we have had our dark moments, moments of feeling sorry for ourselves, moments of feeling sad and moments of feeling disappointed and angry. Those feelings almost but disappeared when Luke was born. One thing we have never felt is alone. Our relationships with our families and friends have only strengthened as we have witnessed them welcome and love our son as their own. I have met the most incredible people as a result of Luke, and I have formed lifelong friendships with likeminded parents. I have felt as if I have been included into a secret group, a group of individuals who speak nothing but truth and who want nothing but love and inclusion for their children. In addition, strangers from across the world whom I have never met have offered advice, support and encouragement and in turn have become special friends. So no, being a parent of a child with special needs not lonely, if anything it has opened our eyes to a world of braveness of love and of kindness.
11. Siblings of children born with Down Syndrome are affected negatively
All studies that I have read and each family that I have spoken to dispels this myth. Most siblings report that their relationship with their sibling born with Down Syndrome is one of their most treasured gifts. We cannot wait to welcome Luke’s sibling into our family in January and we cannot wait to see Luke fulfil his role as big a brother. We cannot wait for Luke’s sibling to adore, look up to and challenge Luke and we cannot wait for Luke to teach his little sibling kindness, patience and how to love purely.
12. Hitting milestones will be a struggle
Yes, Luke’s milestones have been slightly delayed, but has it been a struggle? No. If anything him hitting each milestone has been made that much sweeter and has been celebrated that much more because of this. We have and continue to gently encourage and quietly equip Luke with whatever necessary to ensure that he is given the best opportunity to thrive and challenge himself, but we have tried not to fixate on when he reaches each milestone. If anything this has been a struggle for me as an inherently competitive person, but this slowing down and savouring of each moment has taught me that it’s not about who reaches a goal first, it’s about how sweet the journey was getting there.
THINGS THEY DIDN’T SAY
- You will be happy. Heart bursting, blindingly, truly happy
No one told me this, besides if anyone had I probably wouldn’t have listened and I certainly wouldn’t have believed the extent of that happiness. Anyone who has received a diagnosis either prenatally or postnatally will tell you that it is a dark time. A time of mourning and of sadness and of heart rendering loss, you wonder how you will ever get over the trauma. But what a I can tell you is that it does pass and when it does, the light that shines through is truly blinding. I can honestly say that my heart has never been so full, sometimes I wonder if a living beating organ can expand any further, and then it does. This moment, right now, is the happiest I have ever been, and it is a direct result of a little boy who happens to have an tiny extra chromosome.
2. You will need to practice self restraint
You will need to stop yourself from yelling “please don’t feel sorry for us”. Because you will get a lot of “I’m so,so sorry’s” You will have to reign yourself in from answering peoples ignorant questions with an “are you serious? “answer, because you remember that once, not long ago, you were naïve and ignorant too. You will need to refrain from throttling other children who are mean to your child, because you understand that they are only children, children who perhaps need a little more guidance. You will want to protect your child with every single ounce of your being, and that level of protectiveness will scare you. We have chosen to rather use that protectiveness to educate. We have decided that it is only through awareness, compassion and kindness of others that our son will be truly protected, and it is really through our own example that he and hopefully others will learn.
3. Life will be fun
When you receive a diagnosis you get told all of the very scary things. You get told the things that may happen, how difficult life may be and how you may be in for a very difficult and long path. Yes there are tears, there is frustration and there is worry, but that’s about being a parent. They don’t tell you however exactly how many deep belly laughs you will have. They don’t tell you how much you will smile and they don’t tell you just how much happiness will be brought into your life. What they forget to tell you is how fun your life will become and that that deep seated happiness will far outweigh any anxiety and any hurdles that you may have to face along the way. I can tell you without a shadow of a doubt that we laugh every single day. We smile until our cheeks hurt and when there are tears we try and smile through them. Life is fun, and I have no doubt that the fun is only just beginning.
4. You will feel proud
It blows my mind that not so long ago people born with Down Syndrome were immediately institutionalized. They were hidden from society, locked away and forgotten about. I look at my son and I cannot believe that we have created something so perfect. I feel such an immense sense of pride, so much so that I want the world to know about him. We are not embarrassed and we are not ashamed of who our son is. We want to celebrate who he is and we are so excited to see who he will become. I once thought that I would have to swallow my pride at not being given the child that we had dreamt of, little did we know that our son would make us more proud and would exceed every single expectation that we had conjured up in our minds.
5. Your Eyes Will Be Opened
when you receive a diagnosis you feel that you will never be able to see through the haze. You feel as if your life as you know it is ending. And in a sense you are right. Life as you know it is about to change, just not in the ways that you had possibly expected. Our lives have changed, they have changed in a million ways and as a result our outlook to life has changed, and I like to believe in only the best ways. My eyes have been opened to a whole new world. A beautiful, happy and unexpected new world. A world where differences are celebrated, where tolerance and patience is key, and where love is in absolute abundance. My son has made me a better person, he has made me value life more, and he has opened our eyes up to the pureness of true love.
6. You will never, not for one second, regret your decision
I always maintain that we were lucky to have found out Luke’s diagnosis prenatally. We were able to make our decision and for us that decision was an easy one. We chose Luke. We both knew that by doing so was the easy path. We knew that as a result of this choice we would never have any regrets. We would never question “what if” and we would never wonder who our son would have or could have been. We made a decision to choose life and I can promise you with every ounce in our being that this was the best decision that we have ever made. We have zero regrets. I look at my perfect little son and I feel privileged that we will see him grow, that we will see him become the person that he was always meant to be and we feel honored that he was given to us.