8 things to never say to a special needs parent

As a parent of a special needs child, I always find myself in situations where people find it okay to comment on me about my children, faith, parenting and everything else they can think of. I know, I know, I know. They mean well. Blah blah blah blah. 

1 - "I'm Sorry''
While a statement like this seems like the only thing you can say sometimes. It actually is offensive to the person who your saying 'sorry' to. 
What happens next? What do we say? "don't worry", "He is okay", "Oh, it's nothing". There is no reply for this. I'm not sorry that my kid has a genetic disorder. He is my kid, after all. We don't need or want sympathy or pity. We really don't want it. So by saying 'sorry', you are apologising for us being in the situation we are in, feeling sorry for us. Again, I say this, we don't want pity.   

2 - "I hope he gets better soon (Shifa)" (not including when he is sick)
My son has a genetic disorder. A genetic disorder is not a sickness. It can cause his body to have a low immune system but the genetic disorder itself is not a sickness. His hearing impairment is not a sickness. His vision impairment is not a sickness. His lack of development is not a sickness. Nothing about him is sick. And because it is not a sickness, it can not be cured. It is, what it is. Just the way it is. I know alot of people find it hard to accept or understand that something like this is not a sickness. My family took it very hard always asking what it was that we could prevent this from happening again or getting this again (like it was a some virus that you could pass on) but it's not. It takes a while to accept the fact that it just happened. So please don't say this. Because he is not sick.


3 - "He looks fine, he doesn't look like he has anything"
Thanks for trying to make me feel better. It didn't work. So far, in our two and a half years of life, nobody (except my sister) has actually admitted that Mango looks 'different'. Than you sister. I love you.
We know he isn't 'typical looking'. That's how we found out about his genetic disorder in the first place. His facial features. We know his ten fingers and eleven toes look weird. Yes, That's right. I just said eleven (two bones in one toe). We know certain physical features gave the genetic disorder away. 

4 - "At least you have a normal kid too"
There are two parts of this common saying. 
1. The word 'normal' . Your meaning of normal could be very different from what my meaning of normal is. Your normal could mean, waking up in the morning, feeding the kids breakfast and going to meet friends on a play date, while my normal is waking up, feeding the kids as fast as I can and rushing out the door like a mad women to try and reach our hospital appointment in time. There is no normal. 

2. You are so very very wrong. Seeing your younger child doing all the things the older child may never do, is a constant reminder of the loss that you feel. It reminds you everyday that Mango may never get there. A daily reminder that Mango may never learn to solve his problems or learn the hand and mouth co-ordination skill or learn how to lift himself with his hands but only his elbows and do so much more that your 6 month old is already doing. A reminder that your darling Mango, is so different. It makes you sad everyday, reminding you that your 'nest' that is eventually supposed to be empty, will never be. It's a constant reminder, to you, every time, you look into the two most perfect faces who think the world of you, of how your hopes and dreams were once crushed by the reality of 'never happening'.

5 - "God only gives you what you can handle"
As much as I believe this line to be true. I feel as if, when someone says it. It just sounds so rude. Pretty much like 'Stop complaining'. For me, this line has always been brought out at the wrong time and wrong place for me. 
My husband and I actually spoke about this line over dinner once. We spoke about how, one simple sentence could mean so many things and none of them were nice. 
I know, I can handle things because we do. This doesn't mean that we aren't allowed to share our disappointments. This also shouldn't mean that we become too worried to say anything because we feel that someone is going to take our disappointment the wrong way and think that we are ungrateful for having Mango.  
Sometimes, I feel like putting my hand up to their face and saying 'Just shhh. Just. sshhh. ssssshhhhhhHHHHHHHH!! Don't say another word'. *High five in the face*

*I can feel my blood boiling and my heart starting to beat a little faster*


6 - "I know so-and-so and they know so-and-so's, sister has a child with a genetic disorder, so I get it."
You don't get it. You don't even get a small bit of it. The fact that you had the audacity to say such a thing, just proves that you don't get it. Unless you have walked in my shoes and been through what I have. You don't get it. 


7 - ''Maybe you need to pray more"
Ahhh... I have actually got this one before. It left me crying in the car for hours. I don't even have the word to explain this one. 
The first thing our geneticist told us after breaking the news about Mango to us was "There is nothing you did or didn't do. Should have or could have done, to prevent this. It just happened and there is nothing to explain why. It just happened."

8- Don't ever say "Retard" or "Retarded" 
The moment I became a special needs  mother. The word retard has suddenly become extremely offensive. The medical term for Mango's cognitive delay is 'mental retardation'. The word is tossed around so lightly and used for jokes, noone really knows it proper meaning anymore. Delay is obviously a better use of language. Especially when you are talking to me. Its a horrible feeling. The moment the word is said, I get this knot in my stomach and without even knowing it, I take a mental note that the friendship I have with this person is a little ruined, a little trust is lost and I plan on keep my distance to protect my heart from being hurt this way again. The word is so backward-living. People I love, tell me I shouldn't be offended when they use the term retard or retarded. But I am and I always will be. Why should I not be offended. Please explain to me this. If so many people in this world find this word offensive, but the parents of children with special needs are apparently being label 'too sensitive' when we get upset because of this. How is that fair. The word has been changed, they have changed it to 'delay'. Use it. 

While everything here is said from a nice place in everyones heart, Please understand that most of the time, they are actually offensive. How else would you know if we didn't tell you, right? You wouldn't know. Most of us parents understand that people always mean well,  so we don't say anything. Alot of the times we just nod and smile. But you just never know what type of mother, might be holding on to the last straw on the camels back with all her might, hoping she wont break. A small line like this could go a long way and just might be the thing that makes her break. Think before you speak.

He is Perfect

Perfect. 


Or

Perfection.


What does it mean? What is perfect? What is it that you see before the word perfection leaves your mouth? What makes you believe that something is perfect? 

I don't even know how to begin to start to explain this lump in my throat. This throb in my heart that makes me feel as if I'm about to explode into a million and one pieces. I want to curl up with my children and protect them from everyone that could hurt them. 
Right now. This very moment, I would trade anything for this feeling to go. 

How do we as parents of such fragile children protect them from people. Protect them from the world that threatens to take more away everyday. How do we protect our children who have special-need siblings that they have not come into a life of hardship, but into a life full of life and appreciation without exposing them to ignorant people that crush their views and make them question otherwise. 

Since Mango got his NG tube, I've had more and more people come to me and ask what is wrong with him. Which doesn't bother me as much if they look like they really care. Some people just stop and stare until we are out of view. Some have the nerve to to blame me, as if I made him that way. Some openly quote that he isn't perfect. All this I can usually take in with a smile and kindly explain to them that Mango has chromosome abnormality and that this is just one of our little obstacles that we need to face but he is otherwise as healthy as he can be. 

Except today. Today. I can't seem to stand and smile while you allow the ignorant words flow out of your mouth and cut deep into my heart, while I nod and smile. Today, I will not justify their words to protect my heart. Because today, my heart is giving in to all the hurt and pain. 


Dear person that stop me in my tracks to ask about my Mango. You didn't just stop to ask about Mango's NG. You didn't just ask about why he is the way he is. You didn't just tell me that my baby wasn't perfect. You didn't just ask me what I did to him to turn out this way. You even dared to say that you felt sorry for Plum, that he has a sibling with special needs. You did all of the above within two minutes of you standing in front of me. 

Mango is perfection. His NG tube, hearing aids, eye patch and all. He, as a whole, is entirely perfect. Everything you see in my kid that you define as not perfect is what makes me think he is so perfectly perfect. 

We are all perfect. Just the way we are.

If most of us can see this. Why can't you?

Moment of realisation

As the year 2014 sets in and my growing 34 week pregnancy belly continues to grow, the reality of how another beautiful soul will soon join our family and turn our world upside down (for the better ofcourse). Something like we never expected before. Because as much as I would like to admit that I am always prepared for everything, it somehow always turns out that Im not.

I realised this morning when I was feeding Mango a bottle of milk. His eyes were closed, half asleep but just awake enough to drink down some milk, that this. This moment. This quiet peaceful one-on-one moment that we had every morning for the past 19 months will soon be gone. It wouldn't be Mama Bear and Mango anymore. There would be three of us or four if you want to include Papa Bear (except I'm sure he wont mind because he would rather me do the morning feeds). My sweet little baby, who kinda actually still is a baby. It was a bitter-sweet moment. I need to cherish every moment that I have with him in the last few weeks. Am I wrong by doing this? Will I spoil him rotten and when his little brother comes along he will feel that i am giving him less time? I want to cry in agony and smile at the same time. I don't know how to react.

I hope one day that my Mango will have the ability to understand the love I have for him. I hope one day he will grow into a man of his own and know that everyday that passes/passed till my very last breath I loved him more than the moment before...

Mango's

Today my darling baby Mango ate a mango. Yes, like a round very sweet yellow mango. A milestone that hit me so hard I didn't even see it coming. I put a nice decent square piece of it in his mouth and he chewed it till it was all mush and then swallowed. He swallowed that piece of mango without choking and dying on me.

So today, I am an extremely proud Mama Bear and I use the word extremely because I am proud of him everyday but today I just happen to be extra proud. We pretty much thought that he would be on purees all his life and the rest of my days on this earth. Puree morning, afternoon and night. BUT today showed us that it won't always probably be like that. Today, I hope, is the day that we can start thicker foods that include more mouth movements.

Today is a good day. A milestone that not many parents take for granted because it is just what is expected and unfortunately have not seen the beauty in having the ability to have mouth control.

Outside there is a bright yellow sun, shining down on our green luscious grass. A bright yellow sun just like my little asian Mango who sits in his supported chair eating square pieces of Mango from my hand.

=)  

Chromsomes

I would say I know quite a bit about chromosomes but if you asked me to explain everything I know to you, I wouldn't know what to say. I would have a mind-blank. However, I know that I have asked a few family member and few friends to join me on this journey and follow us, as I slowly but surely update a little bit about our lives when ever I get the chance. So here I go... Im going to try and explain chromosomes in the most basic and simple form as I can before I explain Mango's chromosome anomaly (abnormality).

In every human body we have cells. Cells, are what make up our body. If we were to take one cell from our body and place it under a microscope, zoom in really close we would see that so much is happening in just ONE tiny cell. In each cell we have chromosomes. In each chromosomes we have genes. These genes tell our body what to do and how to do things. (So when our child either has a duplication or a deletion in the chromosome, the doctor's tell us how much of it is missing and added. When they tell us this - they are actually telling us which part of the gene in the chromosome that is missing). 

Every person has 23 pairs of chromosomes. One copy of each chromosome from the mother and one from the father.
Mother - In a mother's 'egg' she has one copy of chromosome 1 to chromosome 22, and the 23rd chromosome being the sex chromosome, which would be an 'x' chromosome. 
Father - In a father's 'sperm' there is also only one copy of chromosome 1 to chromosome 22, and the 23rd chromosome being the sex chromosome. The sex chromosome from the father can either be an 'x'(female) or 'y'(male) chromosome. In saying this, the sex of the baby is determined from the father.

This is what two pairs of chromosomes look like (in a cartoon kinda way): 

Example

Asking yourself what your looking at? I asked myself the same thing... 

Every copy of a chromosome has one short arm (p arm), a centromere and  one long arm (q arm). This means every pair of chromosomes have two short arms (p arm) and two long arms(q arm).

So, you see the dark shade of purple labeled 'P'? This is what scientist and everyone else call's the 'P arm' OR 'the short arm'. The lighter shade of purpler labeled 'q'  is either called the 'q arm' OR 'the long arm'. The yellow circle in the middle is called a 'centromere' which acts like the body part of the chromosomes holding the two arms (p arm and q arm) together. The centromere is the centre part of the chromosome but this doesn't mean it is always the centre of the chromosome when speaking about the length of it. Then there is an outline, outlining the entire chromosome which is called a 'telomere' and this keeps the entire chromosome together. 

The genes inside the chromosome are identified by using a special type of dye that defines their differences. Each part of the chromosome will be affected differently when the dye comes into contact with them. By this happening it identifies certain 'G-bands' within the chromosome which are labeled by numbers. The smallest number starting from the centromere to the largest number ending at the end of the arm furthest from the centromere. 

Something like this:

Chromo 18.org

I'm pretty sure I haven't covered all of the facts about chromosomes but I think it's most of the things that you need to know about Mango's chromosome anomaly.

Fact: In saying all that I have said. I would like to add one last thing to this short post. I found particularly interesting even though it meant nothing. Each chromosome is a certain size. The largest of the chromosome being chromosome no.1 to the smallest chromosome being chromosome no.22. 

Thanks,
xx


NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

To the me of tomorrow - Mango's 1st

Dear Mama Bear,

Your probably reading this because you know you needed to hear it today. Today, because today is Mango's first birthday. Somehow its a bitter sweet feeling. I understand the pain and joy you ar feeling right now. Well, because I'm you, writing this for today. To let you know that I understand how hard it is to be happy and yet be so sad at the same time. Mango is finally 1! We waited for a long time for this day to come and at the same time we wished this day would never come because of the reality check it would bring to us. I'm here to tell you that it's ok. I'm here to tell you the things we want to hear from our loved ones but they don't really understand our situation enough to tell us these things. 

I can't promise you that it won't hurt. I can't promise you won't cry and I can't promise that the future holds many different days than today. All I can tell you that what ever your feeling is ok. I understand that when you look at Mango would will see a child that has fought for a whole year. He had to fight, a fight that no person should ever have to fight and he had to fight it on his own. I understand that when you look at him to see a 2 to 3 month old child rather than a one year old who should be sitting atleast by now. I understand that it will hurt you to celebrate his one year birthday but wonder why your even celebrating because he kind of isn't really one at all. I can tell you why. We are celebrating not his birthday but his life of 1 year. We are celebrating that he is with us today and remember that not many bubs make it through pregnancy to be with family. We are celebrating his achievements in life and all the things he has accomplished including all the things our doctors told us he would never achieve. We are celebrating that fact that he knows Mama and Daddy. We are celebrating all the support we have had during this full year of therapy appointments, genetics and paediatrician appointments. We are celebrating your sons heart, the fact that it's beating strong refusing to stop. Most of all we are celebrating the fact that you are a family. A family that a bond has grown stronger than most families out there. Today we remember that we are blessed to have such a wonderful child who have changed us as people for the better. A child who has changed the way we see things, say things and do things. We are better people and without him, we would never know what it's like to be the better person we are today. 

You are a mother. A compassionate, caring and loving mother. You have given everything to this day and for that you should be proud. I know its hard and I'm not telling you that you shouldn't be sad. Your allowed to be sad. Noone should tell you that you shouldn't be sad. If you want to cry and laugh at the same time, then go for it. This is not only Mango's day too, this day if celebrating you too. The way he looks at your for reassurance before he does something because he knows you would never let anything happen to him. You are his whole world. You don't remember all the time but I'm here to remind you. 

From Mama Bear

Dear Shopper

Someone shared this with me... It's so sad but so true. Once upon a time I was the shopped (sad to say) but now I'm in different shoes too. 

It is written by a mother who has an autistic son. April is the month of Autism Awareness. Please support them by clicking on the link below. Bringing 'typical' children together with children who have special needs teaches our children to be aware. Involve them in helping. Teach them. Don't be afraid of the unknown. 

http://www.autismawareness.com.au/get_involved

It is these lessons that will define who our children will be in life. To have an open mind and most probably have more knowledge than many other people will. It's lessons of kindness, love, affection and so much more by getting them involved in something so simple. We just have to reach out towards it.

Dear Shopper,
Yes, I know. I’m well aware that my child is screaming. Not just a regular scream, but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.
Clearly, you have raised your children better than me.
That is what you were wanting to say, right? There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.
I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.
This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.” I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided. So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.
Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.
My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.
Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There IS always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.
I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system. So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.
I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.
Who knows? Maybe I’ll get to see the one hidden behind yours. ♥

By Flappiness Is