I'M SO EXCITED!!!!
Tuesday, 29 March 2011
Thursday, 24 March 2011
Although I don't "discount" the difficult nature of some needs, I wanted to express, that so many needs are easily worked in with everyday life. Obivously, it is a very personal decision, and everyone has a different view point on what they are able to cope with - I just wanted to express that special needs isn't always as scary as you may think. (To be honest, when we started our process for Tiny, I definitely wasn't open to SN!)
Love Without Boundaries, is an excellent organisation, that advocates for the Waiting Child.
Adopt China, has an excellent series, each day a "special need" is posted, and the comments are open to families to post about their personal experiences, daily life with their child. (adopt china also has an excellent Special Needs Discussion forum - that is a wealth of information)
I thought I'd quickly list a few conditions, and their "laymans terms" description (only because I didn't know what any of these things were, and had to go.ogle them!) Since I've done all the work already, I thought it's only fair to share! (Note: I am NOT a Doctor or have any experience in the medical field... below is what I have read online - usually on medical sites!)
Firstly, anything that is named "Congenital" means a child is born with it.
Aural Artesia / microtesia / anklyotia - all ear conditions. (deformed or missing outer ear (often hearing canals present) / small (peanut shaped ear - usually no "hole" present)CHD = is short for Congenital Heart Defect. There are TONNES of different heart defects, some will just sort themselves out, some need total heart transplant. Many of the waiting children have CHD, many are also operated on in China. Be aware that if CHD is combined with missing limbs, imperforate anus, hearing / eye troubles - it is very possibly part of a "syndrome". It is very important to get a Specialists opinion. (VSD, ASD, PDH, TOV, TOF, PDA are all shortened names for different heart defects)
Cleft Lip / Palate - present as a big "split" through lip, (sometimes gum) and the palate (roof of mouth). This condition is always sorted out with surgery. The lip and soft palate are able to be fixed in the infantile/toddler years, and hard palate surgery is usually done around the age of 13. What I have discovered with cleft lip / palate, is although surgery is the solution 1. the first surgery may not be successful 2. most often speech therapy and orthodonitc treatments are also needed (just be aware that if you're thinking you can cope with the cost of one surgery... CL/CP usually require alot of specialist treatment) Unilateral means - one side; Bilateral means - two sides
Cyrptochordism - undescended testicles
Hypospadias - wee hole (in boys) not in the right place (urology surgery fixes this)
Imperforate Anus / Anklyoproctia - no opening, or obstructed opening to anus. (surgery fixes this, although some cases may need permanent colostomy bag)
Below are all eye conditions, some more serious than others (some may eventually lead to blindness, some are simply assisted with prescription glasses
Microcornea - small cornea
Strabismus - cross eyed
Nystagmus - trembling eyeballs
Missing eyeball - prosthesitic eyeball can greatly assist appearance
Equinovarus or Club Foot is where the feet turn inward (or outward). Sometimes children born with club foot/feet, are diagnosed with Anthrogryposis, a joint condition which stiffens / curves the joints. The Ponsetti method of casting club feet appears to be more beneficial and less invasive treatment, than surgery, to straighten club feet.
Anemia / Thassalmenia - Blood conditions. As with the heart conditions, these two conditions have varying severity. Some simply require vitamins, other types require regular blood transfussions.
Meningocele - a sac of fluid, either protruding through the skull, or vertebra. Successfully sorted out with surgery. (check that child has normal bowel/urology)
Congenital Torticollis - wry neck (usually sorted with regular manipulation by Chiropractor, occassionally requires surgery)
Laryngeal Web - membrane that covers laryx, can cause hoarse voice, sometimes restricts breathing
Hypoevolutism - I've found two interpretations for this! One was malnutrition / slow growth, the other is delayed! (big word, to say, "the child is small or a bit behind!")
Polydactyl digits - extra fingers / toes
Syndactyl digits - webbed/fused fingers/toes
Ectodermal dysplasia - several conditions grouped together meaning abnormal growth of skin, teeth, hair, sweat glands.
These are but a few of the conditions that Waiting Children have. (please don't get mad at me, if I haven't listed the condition your child has! I just picked a few that I had to look up, when I was looking through the list!)
Here are some excellent Waiting Children websites, advocating for children on the China Shared Waiting Children List. (In Australia, children are allocated to families wishing to adopt a SN child, from the Shared List Only)
Red Thread Kids
Sharing Life and Love
Love Without Boundaries
Philip Hayden Foundation
A Family for Everyone
Loving the Fatherless
and the BEST SN site for information and advocation is
NO HANDS BUT OURS
Please consider these sweet children, who if left in orphanages in China, will not have much of a life at all. (these are the words of orphanage workers, in some children's files).
Make a difference to just one child's life, and you're making a HUGE difference.
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.