Diagnosis, grieving and accepting

GOD always has something for you,

a key for every problem,

a light for every shadow,

a relief for every sorrow and

a plan for every tomorrow

Dear Mother and Father of a special needs child. It is nothing that you did or did not do that could have made this happen or is the reason that your child is special needs. It just was. 

From the moment Mango was born, I knew something was wrong. It was my maternal instinct that told me that something but I don't know what, was wrong. I used to tell my husband that Mango was sick or something but it just didn't feel right. He used to tell me that I was dreaming. 

Ofcourse, lo and behold 9 weeks later we received the diagnosis that our precious boy had a very rare chromosome disorder. So from then on... I always trust what my gut tells me.

{After diagnosis, the family goes through a whole process or recovery. It feels as though someone has shot you in the heart - your heart is aching, screaming in pain but just wont stop beating and suddenly the next thing you know your in a coma. Your awake but your body paralysed. At first you thing that maybe your dreaming and you can't understand why or what has just happened. You can't scream out and ask for help because the voice inside your head is screaming but your mouth isn't moving. }

From this moment on... everyone carries on with their lives, nothing about it has changed except that your paralysed and the only people suffering is you and the people that are closest to you. Well in my case.

Grieving. Then we finally learn and understand what has happened. How could this have happened? What did I do to deserve this? WHY did this happen? OH MY LORD!!!

Grieving can come in many different way depending on the person. I know for me personally I went in fight response and just turn all sensory and emotional feeling off and skipped right into doing something. Which ofcourse was o.k. for the time being. My problem? I never grieved. 

It's important for us to grieve. Those tears and sad words and cries for help. That all needs to come out. We need to go through falling down, curling up in a ball and crying before we are able to stand up, straighten our clothes out and stand tall. It's all part of the process. I hate to say it but I don't know if I can really get over this. 

Accepting. A friend once told me accepting doesn't mean that once you have accepted, you are not sad. To accept something you don't have to happy about it. You can still not be happy with it and who knows we might never be happy with it. It just means we accept and are ready to live with it in a different was than we have been. Not physically but more mentally. Our brains are still all mushy and squashed but it just means we can see a little bit, even a tiny winy bit clearer now. 

So my quest to get over grieving was a goal I was trying to reach for many months now. I can't say that it has been that easy and that it ever will be. I know now that my baby is the way he is. I would never change anything about him. I know that now. This is it and there is no wishing how thing were different but hoping that maybe this will start getting better.

He is who he is and I love him. I loved him from the moment we found out we were expecting. If he wasn't Mango, he wouldn't be mine. Not a day goes by that my heart doesn't ache from the hurt and pain I feel. The knowing of that my beautiful just so wonderful boy will ever have a normal life. Will ever be able to love and hold someone. To even KNOW that someone is there. To feel like he is not different but the SAME. I can't grasp the idea that Mango might one day realise the children around him are playing, running around, using their hands, talking and laughing, all these things that everyone takes for granted because they don't know how hard it is to 'move that hand, grab that toy or focus on that face' when these things are supposed to come naturally - and he can't do any of that. Will he ever feel INcluded rather than EXcluded. So my heart aches. I dont think that a day in my life will go by that it doesn't but now that I have grieved I see things differently. Yes, my heart is aching and screaming out   all week sometimes but I see things differently. I've cried all my tears till not one tear was left unshed and ached all my pains till the aching when numb. Then I finally stood up and told myself that it's over. That part is over. It's time to move on now. I don't know how but I will try. WE will try. 

 I see this as an opportunity. We will learn all our lives about how to do things. How to have more patience and how to love more and appreciate more. We will take this as an opportunity for learning. Well... We learn all our lives don't we?

P.S. So many parents have gotten to the end... If they can. WE can too. 

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...

Letter to Sue Austin 'Deep sea diving.. in a wheelchair'

Sue Austin deep diving.. in a wheelchair
image from ted.com

A friend of mine sent me this link to a video called 'Deep sea diving...in a wheelchair'. I read the title twice before I clicked the link that would send me to the video, I was like 'wwwhhhhaaaaaa?'. 

So before I put the link down for everyone to watch, I'd just like to say a few words to Sue Austin who was the lady who actually went diving in a wheelchair in the sea.

I'll begin by saying, thank you thank you thank you. THANK YOU. Your belief and motivation has not only inspired myself and people around the world but has also educated people on another perspective of what the word 'disability' means. It's an eye-opener on so many different levels. I, for one, can not begin to explain how much you have lifted my heart up from ten feet down in the ground. You're video gives my family hope, my Mango a whole new way of looking at life. Not one with limited potential of where our goal is to be the norm but a whole new goal of being more than the norm. I believe and hope that one day Mango can achieve great things but boy... I tell ya, seeing it is a whole lot different than just believing it. It suddenly changes the belief into reality and so with that I replace the word 'believe' to 'know'. I now KNOW, one day Mango will achieve swimming in deep sea, bungee jumping, parachuting or what ever it is he wants. If it's in his two feet or I have to carry him in my arms. We will achieve it. HE will achieve it.

So with that said, I hope all you wonderful people whether your a parent of a special needs child, special needs yourself or just someone passing buy. I do hope that this makes your day the way it made mine. I hope that it inspires you to see things differently and when the word 'special needs' comes up, you do your part by showing that instead of 'limited, handicap, pity' should be popping up in our minds we change that by thinking of 'love, potential and most of all able'.

Enjoy! http://www.ted.com/talks/sue_austin_deep_sea_diving_in_a_wheelchair.html

P.S. Thank you dear friend

Half roll

What an odd week. I sat around playing with Mango dangling a toy infront of his face wondering if he actually was looking at it or he was looking right through it. It took him 5 months to start using his eyes properly and start focusing. When I say focusing, I mean look at my face. Actually looking at it and not past it.

When Mango was 3 months he could roll from his back to a bit more than his side. More like three quarters of the way. At 4 months he got casts put on his feet to try and correct his vertical talus. We had him in casts for a week and between that time he couldn't pick his feet into the air, move them even an inch and definitely not roll. 

One of the symptoms of Mango's chromosome disorder is that he can learn to do something but there is no guarantee that he will remember it. This is what happened when we had him in casts. After a week of casts, he forgot how to do everything with his legs except kick. THANK. GOD. for the kicking. I was so grateful to see that he hadn't forgot about his legs all together. Three months on now, with alot of exercising and massaging, I can proudly say that he now has the ability to roll on to his side without any help.

I know this is not really much of a big deal to anyone else but for our little man, it's a great achievement. We were told that he may never be able to do anything. From lifting his head to sitting and even walking or talking. In these months that have passed, he can now lift his head briefly and roll to his side. =)

So for all those people who thought and said he couldn't. His proving you wrong. 

Exercises to help with baby's head control

• Tummy time using boomerang pillow, rollers, rolled up towel and placing a toy infront of them
• Flexed carry "In a ball"
  - tuck head forward aiming chin to chest
  - hold both shoulders forward to help baby bring hands together in the middle
  - bend knees up towards chest
  NOTE: They don't need to be all scrunched up so their squashed but something along the lines of those rules.
• Pulling up to sit form shoulders ( sitting on the floor with your knees bent, place bub between your belly and your knees)
  - keep his head in midline
  - this position is a lovely one to use for talking to bub, working on eye contact,showing him stimulating toys, etc.
  - hold his shoulders forward bringing his hands together closely so he can feel them and learn to bring them to his mouth
  - Gently pull him up as far as he is able to control his head

Exercise to help with rolling

• Turn his hips slowly to the side as if he were to roll
• Allow him to try and lift his head while on his side (lifting his head so his ear will touch his shoulder)
• Giving him firm pressure down through his hips so that he can more easily practise lifting his head up
• Play is side lying position, keeping top leg bent and assisting bub to reach for toy with upper arm
• Then slowly encourage him to roll onto his back again
• Remember to practise on both sides

All the best

Congenital Vertical Talus

Rocker bottom feet also known as 'congenital vertical talus' is the term referred to the abnormal shape of the baby's feet, usually diagnosed at birth. One of both feet may be affected. It is not painful, but if left untreated, it could lead to serious disability and discomfort when walked on. 

Vertical Talus

It is characterised by the talus bone (which is a small bone that acts as a connector  between the foot and the leg and helps transfer the weight across the ankle joint) being formed in the wrong position, making the other foot bones that are infront of the talus bone shift to top of it. The bottom of the foot has no arch but instead curves outwards resembling a rocking chair, hence the name.

Many cases of rocker bottom feet are associated with babies who either have neuromuscular diseases, chromosome disorders or other syndromes. The exact cause of this abnormality is not known. However, rocker bottom feet/congenital vertical talus can be corrected. Non-surgically or surgically.

Non-surgical treatments includes a course of stretching and casting designed to increase the flexibility of the foot and sometimes even fix it. 

Surgical treatment includes an orthopaedic surgeon placing the bones in the correct position and applying pins to keep them in place. After surgery casts will be placed on the foot and stay there for as long as four to six weeks. After that, a special brace or shoes may be worn to prevent the vertical talus from returning. 

Note: Around 85% of babies with rocker bottom feet have an abnormality affecting their brain or nervous system. 

Global Developmental Delay / Developmental Delay

Global Developmental Delay / Developmental Delay

What is it?

Global developmental delay (GDD) or developmental delay (DD) is a term used when a child is slower at meeting milestones than other children. Delay may occur in the way a child moves, communicates, thinks and learns, or behaves with others.

Causes

GDD or DD can either be temporary or permanent. Scaling from mild to severe. In most cases, developmental delay is related to some form of neurological abnormality. This may be due to genetic or heredity disorders or other developmental disorders that affect the nervous system. 

WHAT CAN I DO ABOUT IT?!?!

Early assessment and identification of possible causes can help. When medical conditions that cause GDD or DD are treated, usually children's functioning improve substantially. Regardless of whether the cause is known or unknown it is important to remind ourselves that children with GDD or DD continue to learn, although more slower than others and in sometimes in different ways than most. 


I know first hand how hard it can be to receive devastating news about your Bubba. It breaks our hearts to see even the tiniest of things happen to them, like the scars on their face made by the nails our Mamma brains forgot to clip, let alone that be told the news that bubba has GDD. 

I'm going to say this anyways, even though it feels so ridiculous because I myself can never get myself to do this but THINK POSITIVE. Finding out now or seeing the signs now is a good thing. It means that the first step is taken and we can now move on to the second. Which is doing what we can (obviously after all the tears).