The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Monday, April 26, 2010

This may be a bit random, but today when Caleb and I were shopping he was singing a song for me:
"Down at the bottom of the deep blue sea, catching fish for Daddy's tea: One, Two, Three!"

I remembered how he caught a fish a few weeks back that Brian then cleaned, descaled, gutted and cooked--and ate all by himself (pretty much). He'd had his face painted, which means that whenever I see this picture I think "the Tiger and the Fish" like it's an Aesop's fable.

Caleb doesn't get much mention here, but he's quite the fisherman. And gardener. And friend.

weekend update

late on Monday evening!! Oh well...

We went to our second Bowen clinic visit on Saturday, which would not be complete without some episode of sickness. Adam honoured that requirement and duly had a fever Saturday morning that we couldn't figure out. I have to say though that when he climbed up in my lap and snuggled there for 20 minutes I was grateful for the fever. It was wonderful!! He perked up after a while, and we had a nice session with the therapist. I gave her instructions on what needs to address--after the last session Adam's nose cleared up, so I'm ready to expect and see some results in his hearing, bowels, brain, etc! We're still waiting on that though...

Yesterday we went swimming, which is our usual Sunday outlet. However, we had a surprise when we were all having a snack after the session. I had forgotten a nappy for Adam and just put him in his jeans--then forgot that he didn't have a nappy on (do you see a trend too?) We were all sitting and chatting, watching Adam and Caleb having fun and jumping up on a table and then down when all of a sudden Adam says "pee pee, pee pee" and I realise he's had an accident. Now 'says' is italicised because for Adam to connect what he's just done with a word that he's learned and then say it is huge. And it's not too far a leap from that to connecting what he needs to do with a word and saying it. Big encouragement indeed.

Last night we watched "A Beautiful Mind" to unwind--which I found odd after we watched it as it's a real tear-jerker. Not to mention that Brian suggested it at 8:30pm which is usually after our bedtime! I sobbed my way through most of it, as it is such a beautiful story of a woman who has accepted her husband's disability by accepting and staying with him. Several times in the movie I found myself thinking that I would have left him, but she stays. This is even more stark if I reflect on the fact that we "can" leave a spouse, and even our own child, but how much more powerful it is if we stay with them, see them through the disability even at the complete and utter loss of our own expectations. That's really what is at stake, I think--our expectations. If I was expecting a "perfect" child when Adam was born then I would have been disappointed. And if I see living in a world with him as painful then I will be disappointed. But if, as in this movie--completely devoid of spiritual or religious meaning--I stay with the people I've been given through all the various pieces of their life, living the pain and loss with them, then out of that is borne the ultimate meaning of love. This, as John Nash says as he received the Nobel Prize, is the heart and soul of logic and reasoning.

I think I might cry again.

oil and water

You know what happens when you mix oil and water together? If you whisk it really hard it goes all smooth, and then like three seconds later it's separate again.

That's a bit how I feel about Adam's "new" school, which is actually a special needs school and a mainstream school merged together. I really enjoy the Headteacher, and the parents I've met so far, and deeply love the kids, but it's still oil and water. This is a tough mixture to get right. It's also tough to stay clear and focused when you feel your child's needs are on the line.

I wrote this little blurb to someone on email tonight, and I want to put it here for a couple of reasons:

"We are having an inane discussion about jogging trousers, of all things. Some of the ASN kids can't manage buttons or zips, and/or have frequent accidents, and so need to wear jogging trousers. Now that they are merged, they have to abide by the "standard" uniform, which does not include jogging trousers. I asked why the standard uniform is not jogging trousers to begin with. That would put all the kids on equal footing and not single anyone out. Because, as one parent put it: "they don't look smart." Exactly, I said to her. The ASN kids don't look smart is the underlying belief, and we are not about to be brought down by them. I find this kind of discussion exciting and worth having, whether in the church or the school system."

First, this is an example of what is happening under the surface in any merge: it is rarely two equal groups blending together equally. It is often one larger group allowing/absorbing another smaller (not necessarily in size) group into itself. I understand this, and yet to pretend that kids with special needs are automatically included or on similar footing just because you say it is absurd. Disability is absolutely opposed to the way our society is set up. It brings people down, to be honest, and nobody wants to be brought down. I'm not being ugly: when our society is set up for people who have motor-neural difficulties, and problems communicating, and behavioural issues, and low muscle tone, etc., and the rest of the population has to fit into THAT mold, then we're talking.

Second, I want to be reminded of what my idols are. More specifically: I can easily get caught up "advocating" for Adam in quite good ways, and they become my identity. At the end of the day this is God's story, and Adam is very much a part of it, in all that he is and is not. I can raise my fist and proclaim the "truth" as much as I want, but, as St Paul reminds me, if I do not have love it is all in vain.

If God has called me to be a whisk, then so be it. But may I have the grace to love everyone I am "whisking" and resist the temptation to thump my fist. For in doing so I drown out His voice.

Wednesday, April 21, 2010

Healing for Adam?

I am doubtful even as I write this that I know at all what I want to express. A friend sent me a link to a Facebook page called Healing for Autism. I read through the whole thing, which is not short as it is full of testimonials. Pretty amazing stuff, really. Usually I have my reservations about something like this even before I've read about it, but I couldn't find any reason to dislike what I read on this page. How can we not rejoice in someone praying for healing and being healed?!

To be honest though, a bunch of emotions come to the surface when I see something like this. Quite honestly jealousy, frustration, longing, hope, faith, hopelessness, all blends together. I have prayed for Adam, but have I not prayed right? Is he not meant to be "healed", or have we just not prayed enough for his healing to occur? To go back a few steps, what am I asking him to be healed of, and is that really something I should be asking? Is Autism really a "prison", to use this mom's words in the Facebook article, or is it just another aspect of the human condition that can and does reflect God's face? Is Autism an affliction to be rid of, or part of who Adam was and is meant to be?

While I don't necessarily have any answers, I do think that committing to pray for our children and their particular "afflictions" or "prisons" is meaningful, and I will do it. I will also be sure to relate any healing here. Actually, speaking of healing and with regard to a former post (see Bowen Clinic), Adam had his first visit to an alternative therapy here in Aberdeen called the Bowen Clinic, at which visit the woman asked what specific issues Adam has. I related that he is often congested and it's his right nostril that usually runs constantly when he has a cold. She pressed her thumb to his face on the right side a few times (and only a few as Adam did the duck and dodge manoeuvre), but ever since then his nose has been clear. And I'm not kidding--not once has he had the same discharge from that nostril, not since that day. So where does that fit in with the healing and prayer discussion? I can't say, but I'll have to come back to it another time.

Sunday, April 18, 2010

Caleb's prayer

Caleb took me by surprise tonight at dinner. Out of the blue he asked to say the prayer, and I thought he meant to sing the song we usually sing. But no, he launched off into a very solemn series of thanks for various things--the toys that Oma and Opa had given him for his birthday (two months ago!), the sunshine, swimming that afternoon, Daddy coming home on the train later that night. At the end of his list he punctuated his prayer with a sweet "ah-men", very professional. When I asked him who he was praying to, though, he said "Oma and Opa", so we had to clarify a few details during the meal!

This might not be news for many kids Caleb's age but I had never heard him pray before. We have prayed together a few times, but it was me doing the praying and not him. I know that Caleb is a listener, and this was a sweet and profound example of what he's been picking up. I wish all his examples were that sweet! :)

At any rate, he could also have thanked God for the sun and wind down at the beach today, and for not getting wet when that big wave rolled in! He could have thanked God that Mommy kept her temper (for the most part) when he and brother were a right handful in church. He could have thanked God for the car that drives us all over town to do fun things. But I do like that those things are just part of his happy life and don't always need special recognition. I like that God is in the details naturally...that is a great thing for anyone to learn.

Friday, April 16, 2010

We are connected

The world is a huge place, truly. I was reading a book to Caleb today that had a picture of the globe in it, and as I pointed to the tiny speck at the top of Great Britain that is where we live, I regarded the rest of the enormous planet and thought: wow. It really is hard to comprehend the scope of the earth, and yet almost every day I have an experience that makes me feel like maybe "it's a small world after all" could possibly also be true.

Like meeting a post-grad's wife for the first time and finding out she grew up in the town where Brian went to college. Or meeting some people at a party and finding out they are good friends with a couple we became good friends with at Duke last year. Or meeting the University chaplain in the ladies' washroom at the Stirling services rest stop while we were en route back home after our Easter trip. Crazy! And right now, a volcano in Iceland is having a pretty big impact on a huge chunk of the planet, and though we might not appreciate its effects on our flight plans, we have to appreciate that it's part of living on this earth together.

At any rate, Brian's and my interest in theology and disability means that more and more names and places are becoming familiar, and more and more connections made in the network mean that it is slowly becoming more fathomable. I like to see the workings of the church and feel that at some level we are working and striving in similar ways across the globe. I like that loving God and loving His people with disabilities in the church has given me a sense of purpose and place in this crazy big world. Even little Adam, without words or big flashy possessions, has had an impact in his own way around the world.

The people I met in London this week are amazing, and the work they are doing in the Catholic church for and with people with disabilities is inspiring. There are great things afoot, and I'm pleased to be able to watch and learn from what is happening and be part of it as I'm called to. I hope to see this tight little network grow and grow over the years. I hope it will be a little like the ash from this volcano--it will slowly spread out and people won't be able to ignore it any longer.

Monday, April 12, 2010

Friends for the Journey

"Hey, I know someone you might like to talk to."

I regularly experience someone I know saying this or something like it and making the connection for me with another person. It's always interesting to me why this happens, what drives that networking impulse we have. Obviously some point of possible connection stands out--a love of a certain sport, or a cultural background, field of work, or unique characteristic ("You should meet Mike...he's also got really big feet!") As humans we like similarity--we look for the things in other people that we can resonate with, either things about ourselves or things we like or dislike. These commonalities provide us with some sort of bedrock from which to build the relationship.

For us, however, it's a slightly different motivation to make a connection. I never have someone say "My friend Helen's son likes Thomas the Tank Engine too, you should talk to her!" The predominant reason why anyone suggests a friend or connection for Brian or I is that they know someone who has a child with either Down Syndrome or Autism (or both) and that is our point of commonality.

Why do this, though? Why suggest that just because our children both have an extra 21st chromosome or behavioural difficulties we might be friends? I think the reason is the recognition that we all need friends for our journey, and that on this particular journey for Brian and I and Adam and Caleb, we can use all the friends and support we can find.

It is not so much that our kids are the same, because that is also not true. Just because a child has Down's or Autism doesn't mean they will be anything alike at all. But our journey will still be similar in its trials and speed bumps--waiting for physical development, hoping for words to come out, trying to find resources, lamenting educational obstacles, etc. And this journey is one that is noticeably difficult, like being a foreigner in a land where you don't know anyone or speak the language. I do occasionally feel like that foreigner with Adam and our life, and I very much appreciate the friends along the way who I've met or been introduced to who help me struggle on.

Thanks, friends.

Sunday, April 11, 2010

Blast to the Past

This picture was sent to me this morning by the woman who runs our church creche, Christine, passed on to her by her granddaughter Emma. The picture was taken at least three years ago...and yet I bet you can guess who it is! :)

What a cutie, and still the happiest boy in the world on the swings!

Some more holiday reflections

It's Sunday evening, the last day of Easter holidays. Tomorrow the boys return to school and life returns to "normal". I have to say that I'll miss them and the lovely holiday anti-routine we've enjoyed. It's been a new era for us in so many ways, and I am reluctant to let that slip away. But I know that over the next few weeks the momentum we built will grow and the boys will continue to develop. And hopefully I won't drag my feet toward the next school holidays, but leap with joy and thanksgiving straight into them.

We went to visit good friends last week who live in Buxton, England. This is a lovely part of the country where people say things like "Love" and have the greatest accent. Brian and I used to stay at a B&B in the area long before we had kids, and visiting with our boys felt like looking back on two other people we once knew long ago. We visited the grounds (and fantastic playground) of a stately home called Chatsworth and saw chickens, piglets, horses and goats. We also visited a place called Blaize Farm and enjoyed their award-winning ice cream. We walked every day to the city's Pavilion Gardens and let the kids slide on the Bouncy Slide. Sandra and Derek cooked us some great food, and we had time to chat and catch up on life. Now and again we had to quell a few fires amongst the kids (and patched up the occasional finger caught in the door!) but overall it was a great week.

One of the things I can count on when we travel someplace is that Adam will be unpredictable in his reactions and behaviour. This was just as true for Buxton as anyplace, though I have to say the end result did not leave me in tears this time. We even slept all together in one room and survived. It was actually nice to get a sense of each others' rhythms, which I think we miss out on when we always sleep in separate rooms. I learned that Caleb talks in his sleep, and that Adam still snores (though quieter)! I learned that proximity no longer equals disaster, and that gives us hope that this summer we might be able to do something crazy like rent an RV and travel together. This is also possible because even spending 18 hours in the car with the boys to and from Buxton was great fun. Not once did I wonder in my head "how much longer is this going to take?!" And this without the DVD player I really thought we'd need!

One of the highlights of the trip was at Blaize Farm in the sheep barn. They had a lamb pen, and several lambs out for the kids to pet. Brian sat in between our two and the son of our friends. Adam petted a lamb for a minute, but then became too rough with it and Brian took it away. He stayed seated with the group, though, and a few seconds later belted out the loudest "BAAAH!" you've ever heard. It was priceless. Yes Adam, these are sheep!

And the holidays ended in a blaze of warm, sunny, blue sky glory after beginning in snow and sleet. What better start to spring could you ask for?

Saturday, April 3, 2010

Good Friday indeed

Five years ago on Good Friday we lived in Erlangen, Germany. Adam was seven months old, and had gone in to the hospital on March 28 to have heart surgery that would fix the two large holes in his heart. He was in the hospital for 3 weeks and one day. The worst day of his whole time in hospital was that Good Friday. His blood pressure was dangerously low, so low they didn't tell me at the time. They feared he would die. I lived in blissful ignorance.

I remember going to the rehearsal of the choir I sang with in Germany. We were due to sing a set of Good Friday music, but as I had been at the hospital so much I had to drop out. I had a bit of time free that Friday while Adam was asleep, so I went to the church and listened. The music was beautiful, so beautiful that I couldn't bear it and left, after sobbing my way through the first half. Knowing the contrast between all that they were singing and all that was happening five minutes away was more than my heart could bear.

Interestingly though, and quite apart from any coincidence: the day Adam finally was able to come off the ventilator and into my arms, his best day so far, was Sunday. Easter Sunday. So the significance of this time of year, of all that Christ was and is, is not lost on our family.

This year, yesterday on Good Friday, we went for a hike. Our first ever family hike. We completed--yes, completed--a walk of 1.5 miles. And Adam walked most of the way himself. He also jogged a bit, sat and threw rocks into a puddle with his brother (and got FILTHY!), asked to be held, touched our faces, and smiled. In general, he was whole, and healthy, and alive. I am grateful for Adam's transformation over the years, for the person he is and the family we are because of he and his brother.

It is very much a Good Friday. And He is risen indeed.

Thursday, April 1, 2010

Baby Steps

Today was great, and I'm not saying that lightly. It was truly a day of "baby steps", though really I'm speaking metaphorically: today we hit some milestones.

First, we did not leave the house until 1pm. You read that right, one pm, and yes, there is a reason why that is huge. You may have heard about those families or those kids who can stay indoors and play all day, entertaining themselves quietly with constructive tasks. We are not one of those families. Or at least we weren't until today. All this holiday week I've been moving slower and slower, and noticing that the boys have allowed me to do that. It's been really nice, so today when we were still in our pj's at 11:30 I knew we'd have to test the boundaries and stay in for lunch. I made some soup, and while eating we heard on the radio that the Easter bunny would be at the mall until 2pm. That's when I looked up and it was one. We had played indoors happily all morning, and nothing was broken. Wow.

Second, Adam took three easter eggs from the Easter bunny and held onto them. He didn't throw them and run in the other direction for the escalator. Cool.

Third, we were sitting at Starbucks enjoying a cup of hot chocolate after the mall, and Adam (as usual) got down off his chair to sit and rock in the middle of the floor. As usual I pulled him out of the way of other customers. As usual he slid further out into the middle of the floor. Then I asked him to scoot closer to me, complete with gestures, and pointed where I wanted him to be. And he moved for me. Granted I said please, but this has never worked before. Awesome.

Fourth, we went to play with a group of people and had fun. That's not always an easy task with Adam around, but this was a new group for children with Autism and their parents. It was a lovely two hours, getting to know new mums and watching a whole group of children playing happily together. I've waited for years to find something like this, and it was worth the wait.

Funny thing was, sitting there chatting to the mums about their kids, and the diagnosis of Autism, and which special school or base the kids are going to...looking at the kids they all seemed just normal. Which was the best feeling of the whole day.