Tuesday, December 29, 2009
Monday, December 21, 2009
Here is a poem I wrote as I reflected on it all:
My little child
I never saw your face
I never felt your physical touch
But through your presence in my life
...through your little heart beating in my belly
You taught me so much
in the little time you were with me
You showed me where I have wounds
Places of pain that I have kept hidden
You helped me to bring them into the light
And to find healing
You showed me where I have dreams
Where I have hope
To have another child
To mother a little person
You showed me where I have fears
Uncertainty about my future
And how I will cope
And how Matt will cope
You showed me where I was holding on too tight
Where I was gripping with fierce control
To things that I cannot hold
You inspired me
To face my fears
To choose hope
To choose trust
To release control
To let go and breathe
To give myself to my dreams
You showed me, as did Matt
That the only way to live this life
Is in Gratitude
I thank God for you
and for the 10 weeks you were with us
I will never forget you
Sunday, December 13, 2009
What would a physio session be without some water and shaving cream. Look at those beautiful hands.
Monday, November 16, 2009
There he was standing in my room, sobbing. My mind was racing - what had happened? Whilst calming and cuddling him I looked around the room to see if I could see the cause of his pain. Everything looked safe and nothing out of place.
As he calmed a bit, I asked him "Matt, can you show mom what made you sore?" I wasn't sure if he understood the question, and less certain if he would find a way to answer. Without hesitating Matt showed me the sign for CAT. I was astounded. Then I asked him "Matt can you show mom where you are sore?" And he lifted up his hand, and there on it were fresh whelts and scratches clearly the result of an angry cat.
I cannot describe the joy that I felt. Obviously not happy about the cat's actions, but that my little boy had so clearly communicated to me about his pain. I have long been anxious about the fact that he is not able to tell me when he is sore or where. Something that moms really need to know.
I have had a really tough week (a story for a future blog entry) - and this moment was such a highlight, a real gift! Well done Matt. Now I need to have a chat with the cat about scratching...
Thursday, November 12, 2009
Wednesday, November 11, 2009
We met at Tamsin's family home just before she was heading off to the hospital for the day. I love these ladies like they are my own sisters, even though we hardly know each other. Matt was a little subdued during our time with them, but I know he was able to show them that their future is not all doom and gloom, rather a hopeful place.
Please pray for God's strength for Tamsin and His protection and healing for Payton.
Saturday, November 7, 2009
Lloyd had an idea on Thrusday night that if we sedate Matt when he was really tired - then he might just sleep through the MRI. However, the appointment was for 8am - not a time when Matt is usually tired. So my amazing husband woke up at 4 am, and woke Matt too (without waking me - bless him) and entertained him for the early ours of the morning. At 7.30am we gave him the sedation meds at home and drove the the hospital. By the time we got to the MRI room Matt had just fallen asleep - and he stayed that way for the duration of the whole, long, NOISY MRI scan. No anethetist required! Lloyd's sleepiness was all worth it. Poor Matt was very drowsy and almost drunk-like after the scan. But after a good two hour sleep he woke up mostly recovered. We still await the results of the scan.
Wednesday, October 28, 2009
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.
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.
Wednesday, October 7, 2009
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.
Sunday, September 27, 2009
And what's a party without presents.
Maurietta had kindly agreed to sing some of Matt's nursery rhymes which she did with great enthusiasm. She captivated the attention of children and parents alike.
Anna drumming on the box!
Mom singing along, Matt enthralled