Good Inclusion links

Here are two links that I have come across that I don't want to lose track of.

First is a moving, inspiring, and heart-warming speech by a mother who  shares why she is passionate about Inclusion for her son

And here is a great article written by a teacher who worked with children who have special needs in a setting where these children were educated in a separate classroom within a mainstream school...she shares some really useful perspectives on why Inclusion should be pursued...

Here are some of my favourite quotes from her article

"We have absolutely no way to know what a child will or will not be able to learn, and so the best we can do is assume competence and provide supports and accommodations that respond to the learner’s needs. Not parallel curriculum! Not different goals! Our professional obligation is to give all children full-time access to the general education curriculum (social and academic) via class membership that is valued."

"Belonging is a prerequisite for learning, and without a sense of belonging, learning is difficult."

Matt ice skates

So in my last post I wrote about how Matt was included into a birthday party through the mother of the birthday girl being open to having a variety of activities allowing for Matt to participate.

I had been concerned that Matt would not be able to participate in ice-skating activity of the party. But let me report to you that not only did Matt ask me if he could try to ice-skate, but he willingly wore those strange, heavy, wobbly ice-skates AND waddled over to the mini ice-rink AND stepped onto the ice. There he held to the side, very conscious that he was unstable. But didn't flee. He slowly got to know the ice and realised he could slide forwards and backwards whilst holding to the side. And that's what he did. And that's what he enjoyed. I was so proud of his courage to try something so new!

Wielding the power inside her effectively...

I love this..

'delayed' is a word that helps neither me nor my daughter at all, nor any professionals that serve her.  To think of development, milestones, victories - only in vertical linear patterns keeps us in a "catch up" mindset.  I don't believe Addie is delayed.  I think she's just different.  Even when she could walk, it wasn't that she caught up to other kids - she still does it differently.  She is unable to speak verbally, but that is not a matter of being behind, we are not awaiting speech.  She communicates effectively through a variety of other means.  And our goal is not that she do things like everyone else.  It's that she does things in a way that helps her understand, appreciate and wield the power inside her effectively - no matter if it looks nothing like those around her.

 

a quote from Terri who blogs here, and whose comments on our RTS Email Support Group always inspire me to pursue a future for Matt that has concepts like belonging, participation, contributing meaningfully and other ideas that push towards Matt being appreciated as a valuable person in society.

Through a Friend's Eyes

One of Matt's friends mom, Sharon, posted this beautiful perspective on her son's friendship with Matt. It really touched my heart, seeing Matt through her eyes, and her son, Jude's eyes. I often get so caught up in my view of Matt, it is refreshing to see him, and what inclusive education means from another angle.

Click here to check it out: A Friend Called Matt

Hope and the future

I am really not sure what the future holds for Matt. I have learnt not to dwell on it too much as so far each stage of his life has turned out different from what I expected. And mostly in wonderful ways...exceeding my hopes for Matt.


Click here to read a news article about a teenager who has RTS. It is a story of how he has found his place in his school community and... well go read it I won't spoil the endig.

It gives me hope.

Lasting gifts

Raising a child with special needs often feels like one is trapsing through a wilderness, I have mentioned this before, with few well-worn paths, let alone any tarred roads or sign posts. At times it can be rather lonely as few others are journeying through these parts. So when one meets a person who is willing to journey with you for a season, then you are deeply thankful. And when you realise that, in addition to providing great company, they also come equipped with all sorts of tools and knowledge that make the wilderness less scary, then you know you will forever be grateful that this person walked along side you.

Matt's play group teacher, Debbie, is just such person. I knew from the moment I met her - her warm nature, calm presence and compassionate heart - that Matt would do well in her care. Matt has come to adore Debbie, or as he says Bebbie. There has not been one day he has not wanted to go to school. Matt has grown in more ways that I can imagine - from recognising letters, to forming words and talking, to climbing a ladder, to holding a other children's hands during "Here we go around the mulberry bush", to becoming comfortable with sand and all things squidgy, to understanding what it means to say sorry, to saying hello and bye, to loving books, to completing puzzles, to becoming toilet trained, to learning to count, to realising that other kids are ok to play with. Debbie has been a KEY member of the team of people who have sowed into Matt's life. She has completely integrated him into the group of children in her school. He is treated as an equal, his opinion is sought out, he is expected to participate and give just as every other child. But at the same time Debbie has been able to balance the fact that Matt's learning needs are different and she has helped him become the best Matt that he can be.

I am going to miss my chats with Debbie after school. Helping me see what is "just normal kids stuff", and what "is special needs". Advice on anything from potty training, to where to buy a good sun hat. Giving me feedback on Matt - remembering what he did or said that would be of interest to me. Pointing me in the direction of a pre-primary school for Matt and opening doors where she could. Constantly thinking about how best we can help Matt reach his potential.

So it is with great sadness that I said goodbye to her today after Matt's last day at this school. The sorrow I feel shows just how valuable this experience has been. If it were not of such great worth, it would be easy to leave with a simple goodbye.

It is totally for Matt's benefit that we move on from Debbie's playgroup, as much as I would love him to stay there forever, we know that Matt has more learning, growing and exploring to do. Thus our path continues through the wilderness and Debbie will no longer travel alongside us as she has been for the last 18 months. But though we will miss her , I am very conscious of the lasting gifts that she has imparted to Matt and me; gifts that will stay with us for many years.

A bush-wacking mama

...in the midst of all my concerns for next year, I must admit, I am not completely overwhelmed. One of the reasons is that I am not beating down raw vegetation to carve down a path in a completely unknown land. There is a path...yes it is a little overgrown, yes the jungle of the unknown and potential problems is dark around me...but there is a path.

This week I met a lady who has been key in creating a path in this part of the jungle where I find myself. Her name is Glenda. Her son Daniel used to go to the same preprimary school where Matt is going next year. Daniel is a remarkable boy who made a deep impression on the staff and children of the school in his time. Daniel also has Down Syndrome. It was because of Glenda's impassioned appeal to the principal that Daniel was given a chance in join the school. It was because of Daniels personality and his mother's care that, not only the principal but one of his teachers, decided engage in further studies around how to include kids with special needs into their school.

So when I knocked on the school door earlier this year, and I saw the principals embracing heart towards Matt...I know that lady that I need to thank for creating this little pathway is Glenda.

Not only a bush-wacking mama who has carved out a place for her boy in a mainstream setting, but a woman of such sensitivity, courage and joy. She came to my house for a cup of tea, and what was initially planned to be a half an hour chat to meet up, turned into a nearly hour and half visit where we shared stories, laughter and tears. I now count her as one of my friends. Someone I can phone for advice or just to rant or to share a story of triumph.

Thank you God for Glenda and for others who have pioneered in the making this world a more embracing place for Matt.

Meet a young lady with RTS

Follow this link http://www.youtube.com/watch?v=MFUbyUwp35Q&sns=em to meet April and her sister Rachel who made the video.

Beautiful!

Beacons of hope

Their love for each other was unmistakeable. Neil and Bee. He was in a car accident a few yesars ago, which left him with a host of injuries. He has had to undergo a number of surgeries, and is in mostly good health now. Except that his thinking and memory is affected. I met him in 2005 when he came to volunteer at my work place. It was arranged that he help us out because it would be good for his recovery. In return we were blessed by his friendly and positive personality.

Now I see that he has fallen in love. Bee - She can't really manage to walk without Neil gently supporting her. She is beautiful with well groomed hair, face and dress. I can see her mind is sharp, but she struggles to form words in her mouth. She talks, I try to listen and only understand a little. Neil "translates" for her - he understands everything she says. She too was in an accident and her injuries have taken longer to heal.

Neil still comes to voluteer and this week he had brought Bee with him. I met them on their way our of our building so didn't get long to chat with them. But I was drawn to their warmth and obvious love for each other - so tender.

As I work part time I am not always up to date with everyone's news. So I asked a colleague to update me to Neils relationship with Bee. They have been in a relationship for a while now, in fact that have made promises of love to each other and exchanged rings. They are in some senses married, but they cannot live together as the complications of both their injuries would make it too difficult. They both live with their own families - in two different cities! But they don't let distance undermine their love - they travel regularly to visit each other.

I was so moved by their story - their love is a beacon of hope for me, and for my dreams and contemplations about Matt's future. If you read my blog regularly you will know that my deep prayer for Matt is that he will always be loved. I am not necessarily talking about "marriage love" - but just love: "interaction, understanding, belonging, friendship love". In a world where people so often get distracted by outward appearances, ability, success, and power - Neil and Bee's love tells me that there are people who can see past all the outward stuff and love the person on the inside. That is indeed a beacon of hope.

No limits

She had a shy but radiant smile at first. She was one of those people who, when you met her, were invited into her “real” self immediately. It seemed that she did not want to play the social games of “hide and seek”. I was warmed to her quickly. Her name is Jess.

Last Saturday our physiotherapist had invited us to meet Jess and her mother. I had previously heard inspiring stories about this young lady: how she had been given a “no-hope” diagnosis, and how her parents had been told that she would never be able to read or write. Today she can send text messages and surf the net. She has raised money for her personal needs – like buying plane tickets, a keyboard, air-conditioner, and many more useful items – by making and selling beaded angels.

Her mother had a kind smile and was delightfully interested in Matt. I could see that she had a deep and firm strength to her – most likely built through the years of raising a child with special needs. Yet her strength did not overpower her gentle and inviting manner. I enjoyed hearing her share about being a mother to Jess. I was very encouraged.

Although our visit was short as Matt needed to head home for nap, it was a precious encounter. Jess is a role model for me – a picture of how a young person with special needs can develop into an insightful, humorous, and confident adult. Interacting with her has strengthened my belief that we need to be so careful and so intentional about never putting any limits on Matt’s ability or development.

I hope to see Jess again – I have placed an order for some of her beaded angels so I am sure we will.

Hope for the future

A couple of nights ago we listened to a CD that my brother had given me months back. He had heard this talk on our local Christian radio station and had ordered it for me. It was entitled VICTORIOUS LIVING. Now I was expecting a well-known Christian leader to give us the “5 steps to victory” or something similar (yawn – I don’t do steps, but that’s another story). I was completely blown away when the hosts introduced the speaker as some one who had cerebral palsy. His name is David Ring. As he started talking I struggled to follow because he is not able to fully pronounce all his words, but soon my ears adapted. He shared his life story – filled with tragedy of losing both his parents and experiencing much rejection. Yet as a teenager he discovered that God really loved him despite everything – and this changed his whole life. It’s didn’t take away his cerebral palsy but it meant that the cerebral palsy was not going to limit him. Today he is an evangelist – he has spoken at thousands of gatherings, encouraging and challenging people to live their lives to the full.

I was blown away.

I was blown away that God could truly use David, with cerebral palsy, in such a dramatic way. This is something that I have wanted to believe in for Matt. Not that he necessarily becomes an evangelist travelling the continent, but that God has plans and purposes for his life, regardless of his medical diagnosis. Now I am convinced of this in the deepest part of my soul.

I was blown away by how God provided for David even when his mother died. This is my greatest fear – that I would die and no-one will love Matt the way that I can. But the truth is that God loves Matt more than I do and He will provide. That fear in me was quenched as I listened to David share about God’s faithfulness to him.

I was blown away by how God did for David more than any one could think of imagine. In fact his family had told him that he mustn’t even think of marriage because no-one will want to marry him. Today David is happily married with 4 children! I felt a deep challenge that my love for Matt must never become a cage (even though I want to protect him), but rather my love should be a springboard – launching him into all that God has for him, and all that God has created him to be.

I was blown away by the hope for the future that God has restored in my heart. Up until hearing David talk I have been dealing with my fear of the future by avoiding it. You must understand that when you have a child with special needs the future is a Very Scary Place. In my mind I imagined a big iron door between me and the future – I refused to contemplate it, telling myself that “I will deal with it when I get there”. That is how I coped, that is how I managed to maintain joy in the present. To some degree that was helpful, but avoiding the fear is not truly being free from it. Through David’s testimony I felt God lift up that iron door and invite me to look to the future with hope. I was still to remain in the present, but no longer hide from the future and the fears that lurk there. I feel remarkably freed by this – my fear has been replaced by hope.

After the talk finished I googled David Ring – you can check out his website by clicking here. I see he has published a book called Just As I Am. I’m going to try get myself a copy, I suspect it will make an excellent read.