Wednesday, October 28, 2009

Conquering Sand

This is the hospital where we have spent the last 10 days. It is in a tiny village called Zithulele. Lloyd and I went to a rural part of our country (Eastern Cape, previous Transkei) to support and serve 4 of our friends who live and work here.

Our friends Ben and Taryn (both doctors at the hospital) have recently done up this cute hut on their property for visitors. We were blessed to be the first occupants.

I took this photo standing outside our hut. You can see the sea in the far distance. All around us the view was the same - rolling green hills and little huts.

Matt got to learn more about roosters, hens and chicks - much better than just reading about it in the books. Although the rooster had a bit of an attitude problem and felt he needed to assert his dominance by attacking other "alpha males" - so poor Lloyd was often the object of his assault. (Fortunately Lloyd manage to run for cover or throw water at the determined fowl - and was spared an actual pecking)

We weren't worked too hard, and on one beautifully sunny day we headed down to a stunning rock structure called The Hole in the Wall - you can see why in the next photo. Matt loved playing on the stones - picking them up and throwing them. Matt had been really unwell for the first 4 days of our stay, fortunately by this time he was starting to recover.

Matt and I enjoyed watching the waves break through the Hole in the Wall. It was quick magical and Matt (who usually is always moving around) sat still - transfixed by the sound and movement.

Ben and Taryn have the BEST trampoline. Matt took a little while to get into it. He preferred it when dad jumped and the sensation of being thrust into the air, as opposed to jumping himself.
By the end of our visit when Matt could easily spend an hour on the trampoline being flung in different directions as others jumped around him - should people rest he would sign MORE MORE. And as soon as the jumping started so would his lively laughing.

Here is a cute pic of Matt and Emma having a laugh - Emma's parents Karl and Sal are also doctors at the hospital. Matt enjoyed being around the other kids although he is definitely in the phase of playing alongside kids, rather than with them.

The Saturday before we left the weather was gorgeous so we headed down to the beach with Ben and Taryn and their kids Joshua, Grace and little Elijah. The beach sand was very firm, the sun hot on our backs and there was a little river of warm water running into the sea. The perfect setting for Matt to overcome his sand-and-beach-hatred. Having other kids around who loved the sand and water thing seemed to really get Matt's attention.

It started with walking on the firm sand and discovering that it was not at all scary.

Next thing we know - Matt is crouching in the water, rubbing his hands in the mud/sand. Thoroughly enjoying it and looking as if he does this every time he goes to the beach.

Our 12 days in Zithulele where filled with many fun and challenging adventures. (One of which was learning to survive without running water for 3 days as the dam pump had broken. I believe our friends there are still without water. Boy did I appreciate my tap when I got home). In terms of Matt's development that Saturday at the beach was a joyful highlight. I am coming to see that Matt's favourite way of showing us he has learnt something new is by surprising us with his new skill. No indication or forewarning that he is learning, no it just arrives - in its complete form. Makes life with him exciting.

Wednesday, October 7, 2009

Evaluations – in my perfect world

I received many comments and encouragement after my post on Matt’s evaluation. One of my friends who asked me how things could be done better. So if I could change the therapeutic and educational world for kids with special needs this is what it would look like…

Before I share my thoughts, please hear what I am not saying:
I am not saying evaluations are bad – on the contrary, they can be an amazing tool to help parents who are with the child day in and day out to recognise progress and they can ensure that the child receive the most developmentally appropriate input and services.

I am not saying that the medical and therapeutic world is bad – on the contrary they are a VITAL component to every kid with special needs reaching his or her potential.

In my perfect world there are 2 types of evaluations for our kids. The first is to determine delay in children; and a second evaluation is to track progress and also to determine intervention and service provision.

Determining Delay Evaluation
This evaluation will only be used when there is clarity needed as to if a child is delayed and also by how much. Hence it may only be conducted on a child once or twice in his or her lifetime. Once it has been determined that the child has developmental delay it is understood that there are no longer any benefits to keep measuring how delayed the child is – and the focus moves to helping a child reach his or her potential.

In order to measure the delay it is required that the development of the child in question be compared to the milestones reached by typical children. All professionals will recognise that no matter how emotionally strong and well supported a parent is, that the outcome of this evaluation will be traumatic. Also, it will be recognised that the written report is not a neutral piece of paper with words written on it, but a document loaded with power to destroy carefully guarded reserves of parental energy. Therefore, the parents will receive adequate counselling before the evaluation in order to fully understand the benefits and the purpose of it; as well as preparing them for the possible negative feelings they may experience. Parents will also receive counselling after the evaluation in order to help them process the feedback, so that their motivation and energy levels are not undermined. This is because all the professionals recognise that kids with special needs very vulnerable to their parent’s attitude and motivational level. It is understood that the nurturing environment created by parents is one of the most crucial factors that impacts a child reaching his or her potential. All effort is made to ensure that the evaluation does not add a burden to already burdened parents; and therefore negatively impact the child.

Tracking Progress and Determining Intervention
The second type of evaluation is held regularly to measure a child’s growth and development and to determine what input is required to empower the child to move towards her next milestone. However, the foundation to this evaluation is NOT a comparison to the development of typical children using chronological ages as labels for various milestones. So you will never find a statement such us “Jane’s ball handling skills are that of an 8 month old child”. Rather each milestone is reclassified making it a descriptive terms rather than a number of an age. For example in the book It Takes Two to Talk* they explain the stages of communication development as follows: The Discoverer, The Communicator, The First Word User, The Combiner. These stages follow on from each other in a linear process and are based on typical children’s communication development. Each stage is clearly explained and a checklist is given so one can easily see into which stage a child falls. Not once in the 171 page book do they link these stages to the ages of typical children. So I can work out Matt is the First Word Users stage, and then research what I can do to help him move on to the Combiner stage, without ever having to deal with the torturous experience of labelling his communication as that of a 12 month old.

In my perfect world, a new framework has been developed for gross motor development, fine motor development, speech development and all the other spheres of development so that each stage is labelled by a description, rather than the chronological age of when a typical child is able to reach that milestone.

A parent might receive the following feedback:
- Gross motor skills: Jane is in the First Steps Stage in terms of her walking
- Hand eye coordination: Jane is in the early Ball Catching Stage and can improve her hand eye co-ordination through the following activities.
- Fine motor skills: Jane has successfully mastered the One Piece Puzzle stage and is ready for 3 to 4 piece puzzles, threading and scissor cutting.

Ok my descriptions of the stages might sound a bit amateur, as I just made them up now. But I am convinced that if all the well-motivated therapist put their heads together they could come up with an excellently descriptive timeline of the stages that will be user-friendly, meaningful and motivating to parents and therapists alike.

These evaluations can be done as regularly as one requires them and will successfully and positively allow parents to track their child’s progress and also to learn what new things they can start doing to help their child onto the next milestone.

I would like to live in this world.
* "It Takes Two to Talk: A Practical Guide for parents of children with language delays" by Jan Pepper and Elaine Weitzman. The Hanen Program, 2004