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.  

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

What I thought I knew

Among conversations I always somehow get myself involved in is parenting. I would be in conversations like 'What kind of company will you put your child in?', 'Will you home school, private school or public school?', 'what type of sport will you teach your child?'.

Before Mango was born I knew exactly what type of mother I was going to be. I didn't know where my children were going to end up but I certainly knew what lessons I wanted to teach them and how I would teach them. I had heard (to my limited knowledge) everything I thought I needed to know about parenting and how the game works. So, by the time I was pregnant with mango I already knew how things were going to play out and how I would deal with EVERYTHING and anything. I had all the lists numbered down in my USB that I call Brain.  

Typical child

Teaching the word 'no' - check

Think before you speak - check

How to open mouth - check

How to chew - check

Dealing with tantrums - check

Dealing with bad habits - check

Being kind - check

To be loving - check

To be useful - check

How to help/increase vocab - check

How to speak - check

How to crawl - check

How to share - check

To look at someone when they are talking to you - check

To sit quietly - check

and well.... the list goes on. 

Except as you know now that this is not the way things played out. When mango was born all I had to throw the entire USB out the window and start fresh with what pretty much looked like this.

To teach Mango:

1. Teach Mango how to look at Mama and/or follow Mama from side to side - 6 months later.... check! YAY!!

DOING THE HAPPY DANCE

2. Teach him how to open his thumbs - 9 months on.... still getting there BUT when he does, I'll be doing the chicken dance. (no idea why) 

It suddenly isn't about what school I would put him in. It wasn't about what type of atmosphere I wanted him to be involved in (ofcourse I would put him in a good environment but that wasn't/isn't important right now, that time would come just not right now), it wasn't about the type of sport I pictured him playing. It was about would be ever be ABLE to go to school? Would he be able to see? Can he hear? Can he use his limbs? Wait. Hold on. Does he even know he has limbs? Will he one day be like what I had pictured? The worst of all questions I think about that every parents with special needs thinks even if they don't want to is 'How long will my baby live for..' 

I have a son with special needs. I do. He needs me. 24 hours a day 7 days a week right now and maybe for the rest of his life. It doesn't matter. As long as my heart beats I will look after him with what ever I have left. 

I have come to that stage where I can speak out and not feel that lump in my throat that my beautiful son, who is a miracle that he is even with us today is special needs. He is wonderful. He makes my world spin. He makes my day. To you he might just be another boy but to me - he is MY boy. My Mango.

ehh...

I had a few friends over the other night. Put my little munchkin to bed and made sure he was drunk with milk that he couldn't even keep his eyes open to finish the bottle. I ordered a pizza and everyone else made dessert. Sat down all together, let the kids run wild while we sat in at the dinning table (where by the way many great conversations have taken place) and we chatted away till even the mice couldn't stay awake.

Chit. Chat. Chit. Chat and I was telling everyone about my terrible history with the paediatric orthoptist at the hospital when I realised that I was reopening a wound that hadn't even healed yet. It felt like I was scratching at a scab and unfortunately I had successfully peeled that dried layer of blood off and I before I knew it, i had started to bleed. I broke into a million pieces without being warned.

I felt hopeless. That very moment I felt like I couldn't go on. I couldn't do it anymore. It was the last straw that I had to give and someone had taken it from me. I felt like my lungs were being squeezed and my heart was about to come out of my chest any moment. I broke. I broke and all the strength that I used to keep myself together was yelling it. That week I was also suffering from a sore throat and was croaking. So imagine  runny nose, puffed eyes and red face make a nice crying picture... except when you turn the sound on and all you hear is a frog croaking uncontrollably as if cheering for the footy.

After a few minutes of what seemed like a fight to get myself together and stop croaking uncontrollably. I felt like all my armour had been shined although dented everywhere, I was ready to begin again. Which also, brought me to the the thought "hold on. I have no voice. I actually have NO voice. How am I supposed to be my son's voice and be serious when everyone around me was to busy laughing at my croak instead of concentrating on my words." So I did the inevitable.  I drank an asian remedy for a sore throat. Pear, lots of blended ginger and lemon. Hold it! As much as colourful rainbow that might sound, it is really rather-stick-your-finger-in-your-mouth-and-vomit-because-that-taste-is-enough-to-kill disgusting. No lie. Try it if you don't believe me. Before you do though, let me know and I would like to see your face as you do it. =)

The Little Things

*RANT ALERT*

I looked around the room full of people. Mothers and children all around me. Everyone was laughing, children running around and all I could think of was if my baby will one day be able to those things...

Parents take so much for granted, the little things their children can do. I mean, I try and move earth beneath my feet so my son can take that first look at me and follow me. I totally understand that people mean well when they say 'he did it when he was ready' but somehow it still makes my blood boil. It makes me want to scream out that I have invested 24 hours and 7 days into trying to get him to look at me. I didn't spend 10 minutes of play time and suddenly he could look at me and follow me with his eyes. It wasn't that easy. 

Months, weeks, days - who knew how long I sat on our lounge floor talking, singing, playing him all day and night till he went to bed trying to get me to look at me and follow my face as I moved my head side to side. I bought so many toys to try and get him interested. I tried so hard to get him to LOOK at me. To LOOK at ME! 

My sister couldn't understand how I go to OT just so Mango can learn to stretch his thumb out and learn to grab things. One month at OT and I can see improvement,  He actually grabbed a toy today with his whole hand. I don't care if it was by accident or he knew what he was doing but that he opened all five fingers to grab that toy is what I was so happy about. Yes, it was only once but it was enough for me to do a happy dance and thank Allah for helping him do so. 

Who would have thought that opening all five fingers was so tough?...

Not Alone (still trying to believe everyday)

After several months of doing it alone, with no one I knew who were going through the same things my family was going through, I finally pulled my socks up, took my courage and gave it a good shake. I needed to find people, HUMANS!!! I wanted to find people with experience. It didn't matter if the child had the same chromosome disorder, a different one or didnt have any chromosome disorder just a small delay. I didn't care. I just wanted to meet special needs parents and listen to their special needs experience. I felt so helpless. 

How is it that I sit around all day, praying and exercising Mango so he can learn to look at things, lift his head up and bring his hands to his mouth and yet after months he still cant do it.

Back to the point, that is a totally different post. I finally signed up for the Unique support group. I found play groups for special need parents and what ever else I could find. I was desperate even if it meant I had to go door knocking. 

UNIQUE is a support group for special needs parents with children or family who have rare chromosome disorders. They were so wonderful. We emailed back and forth and then I joined their facebook network cafe (closed group). There, I didn't meet parents who had the same disorder as my son but I met parents going through the exact same thing I was going through. From sleepless nights to hypotonia and feeding issues. Everyone, regardless of race, religion, country or colour we were all united but one thing... our loved ones needs. Parents with adult children who have been diagnosed and new parents who jut found out early or late. 

So for all parents out there whose children are special needs.. mild or severe, you are not alone. You might feel alone, like I did and I sometimes still do but your not. There are people out there, maybe worse or maybe not so severe at all but We are all united by one thing. Our UNIQUE children.  

Mango and Eczema

Over the past few weeks Mango has been having a sever case of eczema. In the beginning I thought that it was just heat rash. But it starting to peel and scar up and we haven't even been in the sun! So sunburn was out of the question. His face, ears, chest, belly, legs, feet and arms all were covered in red rash. Poor little one. He would rub his face into my chest as if he were to try and dig a hole with his face. My friend's bub has eczema and she bought me QV bath oil and Dermaveen lotion for eczema.

I took Mango to the GP and she her eyes nearly popped out. She gave me some steroid cream (not strong ofcourse 1%) and she told me to go home and put it on him straight away. 

After a few days of using the steroid cream it has become so much better so i'm back to just using the QV and Dermaveen. Well anyways, one thing I learnt from a friend was to wash him with oats. So When ever I gave him a quick bath under the sink, I would put some outs into an old stocking and rub it all over his body. Surprisingly he came out of that bath much more calmer and lets red. It works. 

Overall... Eczema sucks. Anyone have any other tips they would like to share? I would love to know. One lady came to me and told me to try and use Devondale butter. As in Devondale margarine. I haven't tried it yet...