Number 2

Yep - thats right. We're pregnant again! We are finally here now, Officially calling it a pregnancy and not a 'if this is a pregnancy'. YAY!! Three cheers to us!! Mango is going to be a big brother! 

When we first found out, it was quite weird. Me and hubby had already discussed that we were going to do testing to check out in this bub have a chromosome abnormality or not. So, when we did find out - We knew what direction to go in.

At 7 weeks we were booked in for an ultrasound to determine how far along in the pregnancy I was, so we could book a date for a CVS (Chorionic Villus Sampling). In English - It means to take a piece of the placenta, test it and culture it so all the chromosomes can grow and test that again. Don't worry. you don't need to feel stupid. You should have seen the look on my face when the genetics councillor said CVS. I didn't know which question to ask first. What is a CVS? Who is a CVS? Let's not get started on what a fool I made myself out to be.
At 13 weeks, our CVS was performed. I had done a tiny bit of research about what a CVS was and it seemed like a very basic procedure. All the 'experiences' I had read were very good ones saying that it didn't really hurt and that they went back to normal routine within a few days. LIIIIIEEEESSS!!!!
ALL LIIIEESSS I TELL YOU!!

I didn't mean to be that dramatic.

It was a painful procedure. I have to admit that. The needle sticking inside my belly and pushing and pulling to suck up a bit of placenta. Gross and painful. I remember the Doctor telling me to try and not tense. How do I NOT tense my body when a needle is stuck in a belly and keeps poking away at my placenta. Please tell me. Thats right. You can't. You just stay as still as you can and hope that you survive the next few minutes without wrenching that needles out yourself. The End.

The waiting period was definitely like waiting a thousand years. We waited and we waited. Every time a private number would call, I practically screamed hello as I picked up the phone. Probably, wasn't even fast enough picking up the phone and Im pretty sure most of what they heard was the end of hello 'OO O O O oo' .
When 2 weeks and 1 day finally arrived. I couldn't wait any longer and called our geneticist. Receptionist told us that results weren't in. The sound of my despair probably made her feel bad so she told me she would get the geneticist to call the lab and call me by the afternoon.

Afternoon came and I received a call from our geneticist. For some reason My heart dropped as I picked up the phone call. 'GOOD NEWS' she announced. I don't know why I was thrilled by this point but all I could say was 'which part of it is good news?'. Im very pessimistic aren't I. I think I see that now. But all of it was good news and I didn't know how to feel. I still don't. We are very excited to have a new edition to the family. Giving Mango a sibling will also hopefully help him in his development. No longer a new couple with a baby. Somehow 4 feels like a family.


*few tears of joy*

Thank you for sharing this happy time with us.

Please keep us in your prayers!

Hello you! It feels like its been ages. 

Mango recently got a new chair. It looks like someone cut a piece of their corner wall out and added cushions around it, to make it look 'professional'. It sits on the floor, a wedge between his legs to keep his legs straight and to keep him from thrusting/ arching and strap that hold up his upper half. i feel bad putting him in because it looks like I'd tied him so he cant move. Which in reality I actually have done just that, but not for the reason I feel but for the reason to hold him up so he can play with toys. Because seriously, lets face it. Hypotonia is the devil. I think it is anyways. Mango has also got his own special table that wraps around him just so neatly. 

On a different note. If anyone reads this (which I dont think anybody reads this except me). Mango has finally seen a neurologist for his so called 'seizures/infantile spasms'. At first we decided to leave it and just wait it out since they haven't been occurring very regularly.  Then I get a phone call from our neurologist and she said that she spoke to her colleagues and they all think its seizures and to start him on medication. We need to go through blood work first to make sure its all ok. She prescribed us Epilim. Anybody? Anybody ever use this before? Experiences please? Im not asking. I'm begging. 

I have met many parents with children's who have been diagnosed with seizures but  the medication they use are much stronger like steroids and stuff. Oh My GOD. Don't get my started on the stories they have told me about how all the strong stuff effected their kids so bad. It was scary. 

All I see online are medical websites. I don't want a medical website. I want parents experiences because after all. Parents know best because they see EVERYTHING. And doctors? I don't know. I trust them to a certain extent but come on now, most doctors go off by just guessing their way through until something works. They tell you all tiny weeny side effects that are 'oh not that bad' and they make the reasons to use the medication all fluffy and beautiful. 

So please, anyone out there. Parents, people, someone.... anyone?

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

Year 10 class

I was in my year 10 art class sitting down when there was a knock on our classroom door. A lady popped her head in, smiled at my art teacher and walked in with a young special needs girl holding her hand. All my years of being alive and I had JUST realised that special needs children can go to 'normal' school and that they have a lady following them around class to help them with work. I still don't know these people who help are called. Anyone?

Except all I remember that it was at that particular moment that I realised that I wanted a future with special needs. Whether it be working with the elderly, or playing with children or something along the lines of that. I knew that I wanted my future to be a part of something unique and special. I was always one of those kids that would be walking in a shopping centre and see a child in a wheelchair and STARE like I had never seen someone in a wheelchair before. But heres the thing, I know that my staring probably looked so rude as if I wasn't brought up with manners and I understand that if I was in that parents position I would want to slap me on the face. In my head though, it was a whole different story. In my head (I remember this very clearly so some reason I don't know why) I was thinking that if I stared at this kid with a worried face as my expression, I would kind of show that person that I was caring and that the parents would understand I actually wanted to be friends with this kid and help this kid and not the other way around. I don't know why that made sense to me at the time. Sounds twisted doesn't it? I know. I have no explanation for the way my brain works. It scares me sometimes.

However, I never pursued that goal and only god knew why. Now years after, I understand that my life was written out for me and even though at the time all I could see was my goal, The Lord had a much higher and more rewarding goal for me in my future. It was probably from when I was a child and I used to stare at special needs kids that it was just the beginning of my journey to become a the mother I am today of a child with a disability. I sit back and I realised yet again how great Allah is and how he prepared me for such a rewarding role in life.  

Dr A - prediction for the future

Aaaahhhh... Its been a while. Me and you. Together. You know... sitting here infront of our screens sharing this moment...

Eeeeerrrrmmmmm....

Well, we saw Dr A this afternoon (Dr A = Paediatrician). Booking an appointment to see her is like trying to book for the president. We waited three months. Not because we wanted to but because she was booked out. Why? Because she is AWESOME! Like my kid. His awesome. You know that.

We sat in that room for an hour talking about Mango. While he sat there trying to join in the conversation with us.

Mango: Excuse me. I know your speaking about me. Don't face my pram to the wall! I can't see!
Well, I assume that was what he was trying to tell us with all his babbling and screeches.

What I thought had been very mild spasms Mango has been having, turned out that it might actually be seizures. Damn. All I know about seizures are that they could fry your brain. Sorry, no nicer way to put it. Fry. Fry like frying something on a fry pan till its burnt. Damn again. Which if we can really confirm they are ACTUAL seizures then that would explain many things such as his development. Oops. Thats one things BUT its a big thing. ONE. BIG. thing. Booked for an EEG. You know the most stupid thing about an EEG? An EEG is supposed to pick up seizures and high brain activity. The only way they can detect that is if this poor person has a seizure during the scan. WTH? Seriously? What are the chances. Most the families I have met who have children with epilepsy tell me that this scan is pretty much useless. Can I say damn again? Damn.  Oh boy... This isn't even the beginning.

Dr A tried to do a small assessment on him based on her own knowledge and her experience with other children she has worked with during her 15 years as a paediatric doctor.
Her overall conclusion was that Mango is a happy and healthy boy. He will learn to communicate in a way that he finds best for him, in his own way. He will probably never have the chance to go to a 'normal' school or be 'normal'. He probably may never talk or walk but we can only hope that he will some day. He will always remain the little boy he is today. Never being able to be independent in any kind of way. He has medical issues and we can definitely try to get them all under control. *sighs* - all I remember was that voice inside of me screaming louder than Dr A was talking. I wasn't shocked. I was hurt. It just doesn't change. The hurt doesn't change. it always hurts the same and as bad as it did the first time. I slowly started to tear up, so I turned my face away from Dr A to take a look at Mango who was staring into space. I just wanted her to stop. Stop talking. I know reality and I accept it. I just don't want to hear it.. but she kept going. She said - I do believe that your journey will be a very difficult one and there will be many obstacles along the way. I know how hard it is to remember and know but as much as it will be a very hard journey, it will also be a very rewarding one too. As his doctor too, to him accomplish new things will be rewarding for me because we will be seeing each other for a very long time (aka for the rest of his life). - Don't you get it. I don't want to see you for the rest of Mango's life. I never want to see you again! -  We will continue with the therapies and start with speech, - as if we dont have enough of therapies to even make time for more. - We will get to know each other other better and work through things as the years pass.  -Far out. I think this is the start of a bitter sweet relationship. - 

We walked out of room in silence. Walking to the car was silence. It felt like the silence was making us all deaf and this one time, we would let the silence make us deaf so we couldn't hear our own thoughts...

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

Parents

Being a parent of a special needs child is truly something I would call an emotional roller coaster. You think nothing can get worse but somehow it does. You feel as though your getting your feet on the ground again and somewhere along the road you tripped and fell on your face realising that your not quite there yet. You tell yourself and deep down in your heart you know that one day, you WILL get there but damn it - someone please tell me WHEN?!

We, who are so blessed to have someone in our life that might have a disability - understand what it means to be put to the test of what our unconditional love means. We wake up every morning ready to start a new day. Ready to fight for our children's challenging abilities. Whether its the simple things that we are trying to succeed or the more difficult things that us 'typical' people carry out as nothing. We NEVER prepare ourselves for what the next day has in store for us. We don't bother because we don't know what it holds. Today is already too much.

I start to think of all the people that I have crossed paths with during my life as a mother of a special needs child and I being to realise that there is a pattern of ignorance when the word 'special needs' is added to the conversation. Early on after Mango's diagnosis, I had to make the decision on how I would explain to people who had no experience of caring for someone with special needs. As much as I feel like throwing my arms and legs in the air like a child throwing a tantrum, I chose to educate people about children with additional needs. Ofcourse, because I love the fact that I put the extra stress on myself but I do it anyway. If not for myself and my sanity but for Mango. All people see from special needs or disability is hard, limited, worthless, handicap but noone ever stops to look at my child to only see that inside those loveable eyes there is a warrior. A strong soul that refuses to stop trying.

So heres the thing... When me and husband found out we were expecting a new addition to our family - it didn't start off by going to centrelink to fill in form and accidentally tick the box 'health problems'. All we knew was that we wanted him in our arms as soon as possible and not in my belly. When we were told of Mango's diagnosis, I wont deny the fact that we were both shocked and scared but it didn't mean we wanted to turn back time. We still wanted him. We still loved him the same way when we found out he was on his way. The only thing that was different was the way we would lead our lives. We now knew that he had to fight everyday for the simple things. Seriously fight... We had over 3 months intensive therapy to open up his thumbs. His thumbs!

We spend everyday in what I like to call 'play therapy'. For the days that we aren't spending in  a hospital waiting room, we play. We play opening our fingers, we play chewing, we play sticking our tongue out, we play standing with our whole foot on the ground, we play with turning our heads from side to side, we sing and sign in AUSLAN because unfortunately for my child, these simple things feel like climbing Mount Everest. These simple and natural human abilities have been a battle for him.

Don't get me wrong though, I have no problem with this. Except today, I feel a bit cranky. Please don't be offended with what I say here. I truly do not mean to be rude in any way and I am very sorry if you do.

I truly believe that parents with typical growing children, who have no experience with what special needs is like dont really understand that real meaning of appreciation and I understand that, they probably never will. That is so fine with me because I understand that you can't really appreciate something until you lose it. OR maybe I've got it all wrong here, maybe what I'm saying is that people need to think before they speak. I can usually suck it up when I hear a parent brag about how advance or bright their child is and that's great! There is no problem with having pride in your child for accomplishing something early or even accomplishing something but please don't rub it in the face of a mother who's child is nearly one and can't even lift his head properly. Once - twice - three times and thats enough. Would you in your right mind complain about how your child is driving you insane if the person you were talking to had recently lost a child? No. Daaaahh...

I'm sure many parents know exactly what I am talking about. So please be considerate. We want to celebrate with you, your children's accomplishments but you don't need to keep rubbing it in our face. And those who say things like 'I wish he would just stop walking! He walks to much and touches everything'. Please I know what your trying to say is 'He is very active and sometimes its a bit overwhelming', so please say it as it is and DO NOT say that you wish your child would stop walking! You do not wish that because I pray that god forbid that your child stop walking one day, you will be wishing that even though you never meant what you said at the time - you definitely will be wishing that those words didn't come out of your mouth the way they did.

It truly hurts to the core to see the look in your child face and see deep in their eyes that they want to play with the children but not physically have the ability to do so. It crushes your heart to see your baby not developing and see the kids around him who were born after him develop into strong able toddlers.

OMG. I just realised that I haven't stopping typing. If you haven't got bored by now. Thank you dearly for reading.
xxx