I stand in the doorway

I was asked by a South African NGO called SAALED, the South African Association for Learning and Educational Differences, to write an article on my perspective as a parent on pursuing inclusive education for Matt. This will be for their newsletter.

Here is what I submitted:

I stand in the doorway, my eyes moist. I watch Matt and Maya jumping on the mattress. Squeals of joy pierce the air. Not an unusual sight for most parents, but for me I am witnessing a miracle. Something I didn’t dare think was possible: Matt has an authentic friendship.

 

When Matt was born 5 years ago, it was immediately clear that he had a genetic syndrome and soon words like mental retardation and speech delay were thrown at us. The immediate medical and feeding issues made things like schooling and friendship part of a list of things Matt would not likely achieve. Watching Matt and Maya flop tiredly to the floor, their laugher spilling from their mouths, made my heart swell. I really didn’t think this would be possible.

 

I remember Matt’s first day of pre-primary school clearly. Sitting with him in the lego corner, I really should have been more focussed on him and settling him in. But I found myself staring at the other children; they were so able, so normal. Matt seemed so weird and different in comparison. And so delayed. Though I had celebrated that fact that he had made it so far in his short life, I sat there on that fuzzy play mat, wondering if he would ever fit in, would he cope, would the other children want to be his friend.

 

And here I am in the doorway, close enough to keep an eye but not wanting to intrude, witnessing just such a friendship unfold.  I watch as Maya talks to Matt. This is a new thing for me to see. Usually kids use me as a mediator when trying to communicate with him. I understand why they do that, his speech is delayed and it is easy to assume he cannot understand or respond. The children are fascinated by his signing, but as they don’t know what it means, still require me to facilitate the interaction. Maya doesn’t get stressed if Matt doesn’t respond, but she is delighted when she does. She really “gets” him, and seems to like him just as he is.

 

And in so doing Maya is affirming something that I really had to work hard to embrace this year as Matt started in a mainstream setting. I almost became obsessed with how different he was. I panicked, thinking he wouldn’t fit in. I had all these elaborate plans of how I could do extra work with him in the afternoons to help him catch up and seem a little less abnormal.  It was emotional torture, because anyone who has a child with special needs knows, that no matter how hard you try, you can’t make them all better.  I needed to realise that the whole point of inclusion is not that I make Matt fit into a mainstream setting. Rather it is about recognising that he is different, and looking at what changes can be made to the way things are done in the school to allow him to participate fully, to belong, and to keep growing and learning at his pace. In my heart, I had to learn to accept all of him – not just the bits that made him more “normal”. As I watched Matt and Maya giggling at some silly joke that only the two of them shared, I saw that this is exactly what Maya was doing, appreciating all of him.

 

I can’t give all the credit to Maya, though she is a remarkable young girl. The principal of the school is motivated to make inclusion work, saying “every child deserves a chance to be educated.” She has worked to create a school environment which allows children with Matt’s challenges to participate alongside their typically developing peers. Matt’s school teacher and teacher assistant have really embraced Matt. They took their time to get to know and understand him. They met with me regularly, giving me feedback on how he was doing, chatting through how they could better to support him, looking specifically at how they needed to do things differently in the classroom and playground.  

 

At the end of the second term my husband did the whole meet-the-teacher-to-get-the-report thing. After hearing all about Matt’s progress and challenges, he asked Matt’s teacher how she was coping with Matt in her class. Her reply literally brought tears to his eyes as she shared how she couldn’t imagine her class without Matt, and that most days one of the children come to her sharing how much they like Matt. My husband had been living with the heaviness of thinking that the school was doing us such a favour of taking Matt because surely Matt must be adding strain to their environment. As the teacher described her fondness for Matt he realised that Matt was bringing something precious to his teacher, classroom and peers. This is a very moving thing for a parent of any child, especially those of us who parent children that are so easily labelled as demanding resources without adding value.

 

One day I was sitting with Matt in the sandpit. I was appreciating how comfortable he was in the sand having been so texture-defensive for most of his life. In his exuberance Matt happened to splash some sand towards another child who was most offended. Before I could open my mouth one of Matt’s classmates came rushing up to explain Matt to the sand-coated girl. “Don’t be cross with him. He is just learning, he didn’t mean it.” In her words I heard the echo of Matt’s teacher who had found the balance between  making too-big-a-deal  about Matt’s differences and the other extreme of not explaining Matt at all. His teacher has also invited me to teach her class Matt’s signs, which has increased their respect for Matt’s communication skills. Matt is allowed to use his iPad as a communication device during show-and-tell, which demonstrates his cognitive abilities that are often hidden by his speech difficulties. These initiatives have combined to help Matt’s peers to understand him and recognise that he can contribute, although he does things differently.  This has created a helpful context in which children can build authentic friendship with Matt.

 

Matt’s teacher tells me that Matt is as good for Maya as she is for him. I smile as I contemplate this, still standing quietly at the doorway, marvelling at this friendship that has been developed outside of my intervention or control. Something Matt and Maya created on their own. This is the great reward of inclusion.

 

I am not under any illusion that there won’t be challenges ahead. I also can’t say how long inclusion will work for Matt. But I remain hopeful that as long as there are principals and teachers who see the benefits of inclusion for everyone involved, that I will be able to work with them to create an environment where Matt can belong, contribute and grow.

 

More Winter Adventures

 Matt was terrified of running down this very, very tall sand dune. All the other kids had had a whale of a time sliding, rolling and crashing down the sand. Then Daddy came to take his hand, and this gave Matt the courage to mostly jump down the slope - and his laughter filled the air as he realised it wasn't so scary after all.

I love this one of Matt waving at me - I was standing a fair distance away from him. He was running in between these beautiful purple flowered sand dunes. He stopped suddenly, looked for where I was, gave me a ear-to-ear grin before offering a enthusiastic wave.

Winter Adventures

Catching up on our blogging.

 Here are some pics of what Matt has been getting up to these last two months or so.

For some reason Blogger won't let me upload more pics, so that is all for now. Hopefully I can get more uploaded next week. 

Matt's friend

During these winter holidays I have arranged a few playdates with Matt's school friends. Matt has been interested in these visitors although a little reserved. In all honestly most of these friends are invited because I have gotten to know the mothers and it has been easy to make the arrangements. They may not be the ones Matt would have chosen. Matt hasn't really communicated a preference for a particular child. So I have been left to my own discernment

What has been most special is that one girl in Matt's class initiated a visit. She reportedly begged her mom for a playdate with Matt. And her mother heard and responded. So Matt and Maya had their playdate last week at our place. Maya was brimming with excitement to see Matt's play area and his room and his toys. But was most touching for me was the way she was just thrilled to spend time with Matt. I can see that she "gets him" and I don't have to explain him to her. In fact most of the time she was explaining him to me. And she talks to him. Not relying on me in the communication. And she is not perturbed if he doesn't really answer her, but is delighted when he does.

It was quite marvellous for me to meet Matt's friend. A friend who he had found on his own, without his mother being there to mediate or explain. A friend who really sees him for who he is and thinks he is wonderful.

Sunny winters day at the beach

I remember when Matt would scream at the sounds of waves, cling to me harder than a limpet when I tried to put him on the nasty sand, and shrivel up in protest should cold water slightly touch his feet (or hands for that matter). In the first few years of his existence the beach was a place of torture; now it is a place of play and exploration. Though that chilly water still remains uninviting, he is not afraid to test it out. I love thinking back and seeing how far we have come.

Check out the photos from this past weekend when we visited my parents who live really close to the beach. It was a sunny day, but being the middle of winter it was still cold.

From the mouths of children #4

"Matt is a prince" Matt's teacher told me today that often she has some of the girls in Matt's class come up to her and tell her that Matt is a prince, usually accompanied with an expression of how much they like him.

Matt loves watching waves

Matt REALLY loves his boots

Good Different

As I am learning to Celebrate Difference, I have come to realise that being different can be good and it can be bad. Good Different is attractive because it is different, it breaks free from the norm, it is not bound by fear of what others think, it can lead to new perspectives, new ideas, even new and better ways of doing life. Good Different can have friends, can have a place of belonging, can know love, and can make a meaningful and marvellous contribution to this small planet on which we live.

Being different doesn't automatically mean being rejected, lonely and left out.

This is helpful to remember.

Occupational Therapy

Matt has been seeing more of his Occupational Therapist these last few months. Previously we would meet with the OT once a year or so, she would assess Matt and recommend activities we could be doing in the home with him. This year she is helping him with some of his sensory issues and also the use of his hands. Check out some of the fun things they get up to in a session.

 Start off with a quick sensory brush

 Then some hand pushing

 Every session has a theme based on Matt's interest - today it was trains.

  

 Matt loving pretending to ride the train on the gym ball.

 Train puzzles

 Using the puzzle for some help with drawing.

 Let's read a train book

  

 And Matt's all time favourite thing - hanging out, bouncing and swinging in this very interesting, stretchy-fabric hammock. Great sensory input for Matt. He can't get enough

 

 Then some more drawing - this time on the mirror.

And to end, let's clean up. Spray, wipe the drawing off of the mirror.

Celebrating Difference

One evening not so long ago, I am sitting with two good friends who are praying for me. I hadn't mentioned to them my wrestling with Matt being different as described in my previous post. The one shares with me that she feels God has put it on her heart to tell me to celebrate Matt's differences, to dare to be different and see all the positive things that his differences are bringing to our lives.
It was a very spiritual moment, I just knew God was speaking to me through her, although I was rather surprised at the message. At first I fought with God - how can he expect me to embrace the differences I see in Matt. Over the days that followed I reflected on this invitation to celebrate Matt's differences.

Throughout Matt's life we have been doing a lot of celebrating. Every tiny step forward has been received with joy and party. Yet I realised that what we had been celebrating was not the ways that Matt is different, rather the small steps he was taking to become less different. We had been rejoicing in every achievement that would make him fit in and be the same. I am not saying that celebrating milestones reached is a bad thing, on the contrary, that is what got us through these last 5 years. But the invitation here is to celebrate more than just the victories, to celebrate all of Matt. And to celebrate the experiences, people and things that Matt's differences bring into our lives.

This is a huge change in perspective for me. I am still getting used to looking through this new set of glasses. These days, as I am standing in Matt's classroom about to kiss him goodbye, I sense the Holy Spirit nudging me to look around me with my new eyes. I am being trained to focus on all they ways in which Matt's differences are bringing something valuable to the other kids and his teacher.

What I am seeing with these new eyes is very healing.

Being different is hard

I am not there yet. I am no where near being ok with Matt's differences.

I guess this isn't really the politically correct thing to say,  but it is my reality in this season. I have been wrestling with this issue since Matt started school this year. I blogged about it a few months back, where I thought I had worked through it. Recently I wrote an article for a non-profit that helps parents who want to mainstream their child with learning needs, here too I shared my difficulty watching Matt being different to his peers at school.

Clearly I need to grapple with it on a deeper level because right now my honest feeling is that being different sucks. I have this overwhelming desire for Matt to be like others...to make friends, to be able to share with me about his day, to tell me why he starts sobbing unless his dad or I sit with him until he falls asleep, to engage with other children without being so physical, to be out of nappies at night, and, and.

I have never considered myself to be a follow-the-crowd type of person, rather I see myself as an independent thinker, someone who doesn't just buy an outfit because it is fashion, someone who is confident enough to question the status quo. So it surprises me that I am longing for Matt to be normal. I must clarify, that I don't feel embarressed by Matt - I am happy to take him shopping, enrole him in community activities, and include him in our church and with friends. It is not that I am ashamed of him.

I have been seeking the root of my struggles and I think my difficulty is in part because my relationship with him is not as close as it might be if he could pour out his heart to me. I watch other kids interacting with their parents and my heart aches for that. Despite his blossoming speech, and despite the iPad communication device, there is still so much of his thinking to which I don't have access.

Also I think I am really scared that others won't like him because he is different. And that he will be lonely. My heart ices over at the thought of him being without friend one day - just surrounded by people who are paid to be in his life. I find it hard to believe that Matt will have a place of belonging and acceptance in a society that honours "the normal" and where people invest time and money to be IN so they won't be OUT. I see his differences and it feels like they are a passport to loneliness.

A couple of weeks ago, in the midst of my wrestling, I had an intriguing encounter that has stopped me in my tracks, and that has offered me hope...maybe I can make friends with Being Different. But more about that in the next post.

Matt's Easter - photos

Brothers in the Bath

To Do Today (By Terri)

I love the fact that I live in an age where the internet has made connections possible that otherwise would not have been - I follow a good number of blogs by parents who have kiddies with RTS. Reading their words are a gift to me in so many ways. Addie's mom, Terri, not only has inspiring thoughts but has a remarkable way using words to describe them. She also writes for a website called Hopeful Parents which is worth checking out. I had to steal her latest contribution. It really spoke to me, and summed up much of my daily dilemma...

To Do Today

• Put her out there
• Keep her close
• Orchestrate situations in which she can succeed
• Sit back, hands off, see what she can do
• Make annual appointments with multiple specialists per diagnosis guidelines
• Let her be until and unless she appears to need medical attention
• Schmooze the professionals and experts in her life
• Screw the professionals, I am the expert
• Advocate to affect systems change
• Don’t rely on systems
• Contact insurance about coverage for a new communication device
• Research alternate funding as insurance is unlikely to cover a new device
• Seek work for pay
• Continue to work for other compelling reasons and no pay
• Worry
• Don’t worry
• Trust others with her
• Investigate,monitor, and record the actions of others in her life
• Remember she is ‘special’ because she is different
• Remember that she is just a regular kid
• Respond to insensitive comments with a grace aimed at educating
• Fling a zinger back when stupid things are said and done
• Promote inclusive attitudes by taking risks and assuming inclusion
• Don’t expect acknowledgement of any kind
• Search for strategies to mitigate her challenges
• Accept her as she is
• Celebrate
• Grieve
• Participate in typical family life
• Redefine my own family life
• Let people in
• Guard privacy
• Say yes
• Say no
• See what others have done, don’t reinvent the wheel
• Pave a new path, do it my own way
• Get involved in everything
• Take time for myself
• Ask for help
• Don’t depend on others
• Try to work my family into the typical flow of my community
• Sign on to exclusive disability-related opportunities with those who “get it”
• Campaign to change words referencing those with intellectual differences
• Don’t let words get to me
• Change everything
• Change nothing
• Push
• Pull
• Act
• Wait
• Do
• Don't

To Do Tomorrow

• Put her out there
• Keep her close
• Orchestrate situations in which she can succeed
• Sit back,

                      hands off,
                                     
                                        see
                                           
                                              what
                                                 
                                                       she
                                                      
                                                              can
                                                             
                                                                     do…

I've been published again

Here is the link to the 2nd article that I have written for a local parent magazine. It is all about Matt and his iPad.

Very exciting - what a privilege to be given a voice on behalf of Matt.

Book Review: The Boy in the Moon

I have just finished reading “The Boy in the Moon” by Ian Brown. Ian is the father of Walker who was born with a genetic syndrome called CFC. I won’t begin to explain what that all entails, the book does that well enough. The book is about Ian’s journey as a parent of a child with severe health and development issues. Being a journalist and a seasoned writer gives Ian the   ability to write both from a very personal perspective whilst at the same time looking upon the matter from an objective distance.

Walker’s needs are very taxing on the family, emotionally, physically and financially. Ian descriptions of their struggles made me ache for him, his words bringing me into his tiredness and exhaustion. He shares about the dark times in his marriage and in his own private thought world. I appreciate such candour as often parents of special needs kids are so focussed on the positive, as this is how they cope with the life altering gift. But it does mean that others can get the impression that things are easier than they seem. I think I might sometimes fall into that trap in my blogging.

“The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.”

 

This quote from page 46 demonstrates that his book, although brutally honest, isn’t a pity-party, nor does it only focus on the struggles. His writing also invites the reader into those precious, glorious moments of connection with Walker, those moments that breathe life and purpose; and that inspire gratitude in one’s own life.

In addition to telling his story, he also shares his observations and critique of the medical system, genetics, government services, and society – obviously he is speaking from real-life experience, and unafraid to question the status quo. One interesting thought

“Until recently, no-one – certainly no part of the government-funding apparatus – was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until twenty years ago, children this medically complex didn’t exist. They didn’t survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level” page 95-96.

In seeking to understand his son better he explores all that genetics and medicine can give him. Whilst at the same time he is also trying to determine if Walker has a sense of self, grappling with what life Walker could live, what would give it meaning. A hard goal to achieve, especially Ian is an atheist, and many of the more spiritual explanations don’t connect with his world view. He does reach one profound conclusion on page 234

“The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest”

Ian often refers to his wife, but less often shares her thoughts and perspectives. He did quote her reaction to the occasion when, strongly encouraged by someone, she takes Walker to a Shaman. I love the way she reflects on the experience.

“It was a huge relief to me, “Johannah said. “Because for the first time, the only time, someone wasn’t trying to fix him. They were just describing him. There was no judgement or fear. It was just very accepting. And I do think it was a turning point for me. Instead of trying to fix Walker or make him better or diagnose him or see what was causing his state, it was just what and who he is. This is what he is doing. It wasn’t a triumph or tragedy. It just was.” (page 111)

I can connect to that sense of peace one gets when one sees one’s child for what he is: when the yearning for the next milestone has ceased, when you have stopped comparing him to your neighbour’s child, when you are no longer trying to make him something he is not.

Ian shares about joining an internet-based support group aka listserv, and his description of the experience made me laugh in that it was so familiar – the various types of people and responses. He spends time and energy visiting various families whose child has the same syndrome. He introduces us to these children and reflects on what it means for him and Walker. One belief held by some of the parents he meets is the notion that God has chosen to give this special child to this specific parent, that the child is some time of heavenly gift. I appreciate his honest reaction to this way of thinking:

“I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonising about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experiences into a dependable, reassuring stance. But the details of Walker’s life belied any certain path.” (pages 135-136)

I must confess, that even though I love Jesus and read the same bible as other Christians, I do not believe that God intentionally decides to inflict a chromosome disorder on a child, and then gives this child to a specific family as part of a greater, cosmic plan. Nothing in the life and person of Jesus teaches me that this is what I should expect from God. I am reading an interesting book on this topic and so will spare you a theological explanation here. But I must say, although thinking that God is all in control, like a giant puppet master, and that all that happens to us in life is God’s will may bring some comfort to some Christians, I believe it makes it really difficult for those who have experienced the rough side of our fallen world to have an intimate relationship with God. But more of that in another post.

My final comment on this book. When contemplating Walker’s care home, as well as his future, Johannah’s deep longing for him are expressed here: “As long as someone loves him every day” (page 184). I don’t think about Matt’s future that often, by future I mean what will happen to Matt when Lloyd and I have passed on. It is too scary, and as I don’t have much control over it from where I am now, I choose to leave that question in the future for now. But when my heart does wonder down that road, then Johannah’s words echo my deepest prayers for Matt – God, as long as someone loves him every day.

I would recommend this book to parents of children who have kids with special needs – the honest realistic reflection is so refreshing, and affirms you that you are not the only one struggling, and that you are not alone. I would also recommend this book to friends of families of children with special needs – it gives wonderful insight into a topic that is often avoided. Therapists, teachers, medical professionals who engage with children with special needs and their parents will also find this book helpful in developing insight and empathy.

From the mouths of children #3

Maya tells me, "Matt can't talk so well, and it is difficult for Matt to sit still. But I like him, he's my friend"

The full story

I am thankful that sometimes they way I see the world isn’t always the big picture, it isn’t always the full story, it isn’t always the complete truth.

So we have been struggling with some of Matt’s actions (I was tempted to call it his behaviour but I don’t think it is a bad behaviour issue). Three things are combining to make Matt too physical with other children. On the one hand he has just discovered that children are fun to engage with – but with the speech delay it is easier to push,  pull or prod than to find the right word and get it out in time before the other child moves on. Matt doesn’t know how strong he is, he doesn’t seem to be aware of how his roughness hurts other children- a life lesson still needs to be learned. Matt also seems to have some sensory need that draws him to physically touching, pinching and leaning on other children. I have analysed this from numerous angels and am convinced he is not trying to be malicious or intentionally hurtful.

This week I came to Matt’s class during morning circle ring to share some of Matt’s signs with his classmates. They were really receptive. On the other hand I saw Matt, overstimulated by being in close proximity to his friends, grabbing their arms, pinching their skin, leaning in on their laps – not all the time, but for enough time to make me very unsettled.

Very unsettled – I left wondering if I was expecting too much from Matt in this mainstream setting. Were his actions traumatising the other children, would they ever want to play with him? My mind was racing with possible solutions to help Matt contain himself during circle time, whilst still doubting our choice of schooling for Matt.

It is hard to summarise a whole week in a blog post with much happening in my heart and mind. So I will just skip to Friday and share two moments that took me by surprise, and made me realise that I only had one side of the story.

Moment 1:  Before Matt’s class starts parents can hang out for 15 minutes or so while the kids explore and play. Usually Matt and I do an activity together. This morning he was enveloped by 5 other kids, eager to play. Soon they were doing an impromptu ring-a-rosies, followed by flying around like butterflies, then morphing into frogs they were jumping around the front of their classroom. Matt mostly following the other childrens’ lead, sometimes initiating a new movement which the others then followed. Laughter. Giggles. Talking to matt. Matt holding their hands. Matt playing with children who liked him.

Moment 2: Meeting with Matt’s teacher after school she tells me that, yes Matt’s disruptive actions continue during circle time but she has found that he is calmer if he sits next to her. The other problem that has now emerged is that a number of his classmates fight over who gets to sit next to Matt –so much so that she has now resorted to drawing up a roster!

Seemingly all my worrying about Matt’s anti-social actions are not pushing the other children away. Sure they don’t like it, and they tell him so (which is good as he needs to learn). But that is not all they see in Matt, they see a whole much more. And seemingly all the other parts of Matt have charmed them, so much so that they are willing to fight over who gets to sit next to him.

So I am learning to keep in mind the bigger picture, and not just obsess with the challenge that lay before me.

Tour Matt's School

The other day I brought my camera to Matt's school to take some photos to upload onto his iPad. And Matt took me on a tour of his school.

Matt in his classroom.

 Matt's lovely teacher

 The warm and friendly teacher assistant who keeps a special eye on Matt.

 Matt has learnt how to swing on the rings. Mom is surprised.

 

 Matt has conquored the tricky slide, where you have to climb under a beam to access it. A little bit of help is however always welcomed.

 Hoola hooping, I am told, is a favourite activity.

 

 The sandpit - a fantastic sensory place for Matt

 Matt proudly showed me how bravely and quickly he climbed the rope climbing frame, only to get really nervous at the top. Neither his mom or Matt could figure out how to get that leg over the top. Something we both need to work on. Matt was carried to safety.

 A favourite cushion - I am told Matt snuggles with it on a daily basis.

 Cheers - Matt loves the pretend kitchen area.

And the dress up area.

Thanks for showing us your new school Matt