Apples and Oranges

"Don't compare your child to other children." Cardinal advice from all the baby books, and yet I bet if you surveyed 100 parents out there 99 of them would say that at one time or another they had compared their child to another child (and the 1 who denied it is lying). It's hard not to compare--as humans we are born with a special impulse that makes us look at ourselves and look at others and see how we rate. It is only natural that we would do it with our children too.

When Adam was born I tried to keep up with the baby books for as long as I could. If a range was 6-9 months and he was 10 months, I could always claim that he was three weeks early. If he was meant to do something at one year, I would cite all the kids I knew or had heard of who didn't do it until 18 months, thus buying us 6 more months. Part of this was because we didn't have a diagnosis yet, and there was still a chance that he was "normal." I was holding on to this normal and trying to compete with it--comparing him at every level. Another reason was that I was instinctively defending myself and Adam against all the people who asked how old he was and then looked carefully at him. You could see my answer didn't match their expectations, but I always felt that if I had a reason for the discrepancy that might shield Adam from the inevitable response, thought if not spoken: "What's wrong with that kid?"

After he was diagnosed positively as having Down Syndrome, I felt the pressure lessen. There, you've got your answer: "what's wrong? He has a disability. That should satisfy you." I, of course, was not satisfied, as I didn't feel that anything was wrong with Adam in the first place, or to be more truthful: I didn't want it to be seen that way by the world. However, that was when I began thinking of apples and oranges, as in "you can't compare these two things, they're two different fruits!" I realised that Adam's diagnosis meant that he was an orange, and I could relax and let him be different from the apples.

This was a comfort for a while, but could never actually save me from my own natural human impulse. The trouble was, I also felt that if Adam was an orange, then we had to keep an eye on the other oranges! First we read several books about kids with Down Syndrome, all of whom were already much farther on than Adam. Then we were in a support group for parents of kids with DS who were talking, walking (Adam didn't walk until 27 months!*) and generally progressing in ways that he was and is not. Now he is in school and needs the most help of any child in his class. Any group that we go to, I can guarantee that Adam will be the child playing on his own and the others will be playing together. He is, of oranges, certainly behind in the flanks.

Why did this come up? To be honest, because I read something about another child with DS who it turns out can read and talk. As I read I could feel the old bristles coming up..."what, you mean life is hard with your child? But she can read and talk? What more could you want??" I know, it's pathetic, but getting to the bottom of our pathetic impulses is the only way forward.

I have enough friends in the disability world to know there are many children who have more difficulties than Adam, who will never be "ahead" in the ratings. I know how wobbly it is to compare Adam to another child and feel either discouraged about him or critical of the other child. In a sense it's still apples and oranges, only Adam is the orange and everyone else is an apple!

As I think about it, I know why that happens in my heart. It's about the hopes and dreams I have for Adam, wanting him to be able to interact with his peers, play sports with other kids, laugh and tell jokes with his brother, read and enjoy books with his father, go to work someday and maybe have a relationship. It's also about the fears, that he will never be able to talk or communicate well with others, that he will never experience friendship, or camaraderie, or the feeling of sharing intimacy with another person.

I hope, and I dream, and I fear: therefore I compare. It may not be that simple, but that is the best summary I can think of for it. And what is the way to deal with this, you might ask? Well, it is my husband's ability--and Adam's extraordinary gift, to himself and to me--to stay in the present. Whenever I am tempted to bemoan Adam's lot in life, or mine, to regret the past or to worry about the future, Brian reminds me of the critical element I seem to miss: "But just look at Adam. He's so happy." And it is true, no matter what I think Adam has missed or will miss, no matter how much he is behind the other kids in his class, he is happy. He doesn't worry about the past, or the future. He is like the biblical lilies, just hanging around looking brilliant and being fully who he is supposed to be. And the more I can let him be that, I am allowing him to have the greatest success of all.

By the way, * was supposed to remind me to say that not one day of the 27 months mattered in the end. When Adam walked, we cheered.

There we are

Let it never be said that Adam is not a smart boy. He may have earned himself the nickname "Bogey-nose" from the kids who ride on his daily school taxi, quite legitimately too, but he is still a smart boy. He knows what he wants and can now ask for it. And he also knows what he doesn't want, and every last ounce of muscle in his little body, approximately 45 pounds of it, will protest to the bitter end. I guarantee you if Adam is not inclined to do something, he ain't gonna do it.

That includes visits to the doctor, though this is not a new thing. Today was eyes, and I knew right away that he wasn't going to "look at the pretty ducky" for all the persuasion in the world. Luckily we had a nice practitioner who, rather than get annoyed, helped me think through how we might get a good result with Adam for next time. Secretly, I'm not sure there will be a next time.

After all is said and done and we're home watching Cars (again), I still find myself in the position that I hate: figuring out what is worth doing and what is not when it comes to Adam.

I know, for instance, that trying to persuade him to watch one of Caleb's movies with him is not worth doing. He won't watch anything but Cars and that's that. Or, in the words of a British saying, there we are. That's a great phrase that roughly combines "there you have it" with "that's the way the cookie crumbles" and "who cares anyway?" thrown in for good measure. It's the perfect phrase for Adam...you know that lovely chocolate cake you made for Adam's birthday? Well, he's not going to eat it, so there we are. Or, hey, there's a great game of rounders in the park, does Adam want to play? No, he doesn't, and there we are. Or maybe, is Adam wearing his glasses these days? No, he's not. There we are.

Where we are is this little piece of no man's land where I frequently have to decide what Adam is going to do, what he's going to have to do, and what I'm willing to do for the sake of what he needs. It's the place where I long for the ability to reason with him, to explain that if he just looks at the duck once we don't have to come back. Where if he doesn't look, I then have to decide if he gets anaesthetised so that the doctors can have their look. What happens if we do that? What happens if we don't? Do they really need to look? Should I just lie back and quit fighting every doctor who needs a look at Adam? Because if that's the case then I also need to know if we should be paying rent to the hospital, since we'll be there that much.

Sigh. Where did I put that manual for raising Adam again? I'm always losing that thing...

Anyway, there we are. Another day, another dilemma. It's good to be alive.

The eyes have it

You know that look in someone's eyes when you make a connection with them? It's like a little light comes on...their eyebrows go up and most often a smile appears to confirm that you've just hit some nail on its head. This happens in many ways, but here's one from today.

Walking back to pick Caleb up today I found myself alongside a mum of another boy in Caleb's nursery class. I had seen her enough times but not talked to her. I knew she must speak another language from the pigeon conversations I'd observed between her and the teachers, but hadn't pinned it down until I said "hello" today as we were walking. She said hello, and then immediately apologised for her English and said she is from Mexico.

Now, you might be thinking that Aberdeen is a long way from Mexico. It is, but I, on the other hand, was thinking "oh dear." Because the fact of the matter is that somewhere, a long time ago, I also spoke Spanish. And now, with this woman in front of me telling me her English is not good because she speaks Spanish, well, what could I do? So I said, "..." (I won't bore you with the pitiful attempt at Spanish that came out of my mouth!)

It was absolute rubbish, my first attempt to actually speak Spanish in more than 7 years (I still remember my last attempt very clearly, and that story I'll tell to anyone who asks but bring a box of tissues for it). But here's the thing: the Light came on in her eyes. It had nothing to do with me as such, but the fact that her language was being spoken. Someone might understand her. And finally she could make a connection with one of "us". I know that relief well, having lived in different countries and living daily with Adam. It's a joy and a delight to make a connection with someone, to find that another person understands you in a way you didn't expect. It is a momentary feeling like your burden could be shared, even if only conceptually. It's a bench to sit on for a moment on a long, arduous walk. It is hope.

I do like those moments, and I am grateful for the Hand that moved me to speak to her. It was only fear that had held me back, and that fear can easily be dealt with by dusting off my "Basic Spanish" textbook. Now that I think about it, as we talked today, I, too, had a light come on. It's the one that says "hey, maybe you just made a friend."

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.

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, doubt...it 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.