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.

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.

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.

Being different

One thing I didn't expect about Matt's first week of school was how emotionally taxing it would be for me. I was so focussed on getting to the day of starting school, that I didn't give much thought to the days that would follow.

Matt has been very content at school, and his teacher and the teaching assistant have consistently given me satisfactory reports at the end of each day.

The turmoil has been within me - and not with Matt at all.

In this new setting, where Matt is surrounded by a whole new bunch of kids, the differences in their development and Matt's stands out starkly. At first I felt this rising sense of panic that he wouldn't fit in nor would he be able to keep up. Every morning I get to hang out with Matt in his classroom for a quarter of an hour or so, and I would watch the other children chatting away, expressing sophisticated thoughts on matters. Little girls negotiating the subtleties of preprimary school relationships. Little boys eagerly constructing things and getting creative with playdough.

Every new season for Matt requires that Lloyd and I face the reality that he is different, and is hard. Because with difference comes vulnerability; the potential of being hurt. As he settles into his new environment, finds his place, and as others start to understand him; and finally appreciate him, then the pain of his differences goes away. And for the rest of that season we live with joy and appreciation for the love the Matt receives, and for the progress he makes. In a new environment, it feels like we have to start from scratch. I wasn't expecting it to be as unsettling as it was.

I have also had to grapple with this concept of inclusion. I had to realise that inclusion is all about including someone who is different. The aim is not to make them the same as other the children - because if they could do the same things, they wouldn't have special needs. Inclusion is also more than a warm acceptance of a child who is differnt. It is also about recognising the differences, and making adjustments in the environment to allow this child to participate fully. It is about celebrating those differences, recognising that those differences add a richness to the school community.

So, through shedding some tears, through some desperate prayers, and through some helpful chats with Lloyd and a couple of good friends, I think I have come to the place where I can say once more that I am ok with Matt's differences. I am no longer thinking up crazy plans to try to make it seem as though he is the same as the others. Rather I am thinking up clever plans that can make this inclusion thing work. But I know I can't do it by myself. I am thankful that the principal and the teachers are eager partners. My first step, is to learn more about this whole thing called inclusion. Watch this space as I process my learnings on this subject.