The Recap

As I write this I'm sitting by the pool, it's 6:20pm and about 95 degrees, at least 90 in the shade. The kids are enjoying the only coolness afforded outdoors and playing in the pool with Dad, who arrived on Saturday. We were so glad to have him, not least for another pair of hands to chase, hold, catch, feed, clothe and play with the boys! I have to admit having grossly overestimated both the time and the desire I would have to sit and blog when there is so much playing to do, but we'll try to catch up here in a quiet moment.

This is our last day of the Florida leg of our holiday. Tomorrow we leave in the red Ford Explorer, aptly named since we will be exploring the southeast corner of the US on our way to Texas for Brian's family reunion. The boys are excited and so are we to have our first family US roadtrip. I wonder what we will find to explore with them? It's funny, trying to explain what a motel is to a four year old!

The week past has been given to many different exploits, most prominent being the Seal World Aquatica water park, the Daytona Nascar speedway experience, and of course, The Magic Kingdom. All three were memorable for different reasons, and not least because Adam just could not deal with any of it. I have been surprised, in fact, by how little he enjoyed any of what we have done here in terms of large, corporate entertainment. I didn't know what to expect, of course, but I thought surely we would be able to find something somewhere in this haven of dreams coming true that would appeal to my little autistic boy of almost seven. But really, the only things he enjoyed were swimming around the lazy river at the waterpark--something all of us enjoyed, in fact--watching the Imax movie at the Nascar, and sitting on the bench in the shade with Dad at Disney.

Not that the heat has helped--the poor boy has been sweating non-stop like the rest of us. But I try to see it from his point of view, he whose hearing and vision and brain workings are a complete mystery to most doctors and even to his parents. Adam couldn't care less who Mickey Mouse is, or why we should wait for 30 minutes to sit in some little plastic car and spin around fighting "the evil emporer Zurg", or who these funny people are in big costumes dressed like a duck. Adam likes to play and be inventive and be active, and I think a lot of his trouble comes from walking to stand in line, or sitting and waiting for a show to start, and engaging with a world that is not real. He deals in reality, and certainly in the present, so almost nothing in this imaginary, happy, dreamy world matters to him. The happiest moment for him was when, at 6pm, we said OK Adam, time to go home. He immediately made the signs for "home" and "eat" and started walking toward the exit! Sorry, Mickey--you just could not beat the pool for this little boy. Try again Walt, and when you've designed a theme park for kids like Adam who need reality and whose dreams don't depend on being cooped up in lines and close, dark, noisy quarters, we'll be there.

Maybe.

On a brighter note, Adam has been full of music and facial expressions the last couple of days, showing that he is not traumatised by this environment. He is resilient, as usual, and full of life. I think we all have enjoyed this phase of adventure, though I can't say we're not ready to move on to the next one.

See you in Texas!

Horses and Autism

I just realised that I haven't written about my monumental experience with The Horse Boy last weekend. Sorry for the confusion, and for the fact that I can't do it justice just now. I'll give you the link to their website, and you can see for yourself what The Horse Boy is about when you have time. When I have time, I'll write about what I experienced at the Douglas Hotel in Aberdeen last weekend, and how it has shifted my perception of Autism just that tiny, and very important, bit.

When the cat's away...

Brian left tonight for Oxford for a week. When I told this to someone today at the park, she asked if he "must be really brainy" to be going to Oxford. I leave the answer to that to our collective imagination! Of course, no sooner had we dropped him off at the train station and come home did I see all his toiletries laid out on the bathroom counter, neatly waiting to be packed! So much for brainy! :)

I'm well on the way to my first mark of wildness when Brian is away: it is nearly 10pm and I haven't even begun to wind down for the evening. Usually we go to bed by about this time, but when he's away I don't seem to hit the sack until at least 11pm. I do pay for it, but I find that I enjoy the quiet and the space to just potter about by myself. I get so little of it anymore that every stolen slice of time is worth savouring. A week stretches out before me with hopes of a girls movie night, a BBQ with the youth (with sitters for the boys), time to finish my book, time to work, and time to watch old TV shows on the computer while I iron all the shirts Brian will need when he comes back! See, even when the cat's away the mouse doesn't forget about him. :)

My second mark of rebellion was not buying any salad at the store tonight while stocking up for the week. If I don't have to eat it, I'm not going to eat it!

In all seriousness, the week does hold some logistical nightmares, like Adam's hearing test under anaesthetic which is of course scheduled for Wednesday, and which I hope and pray is finished before the sitter has to leave! It should be no problem, but with these things you never know. I'll be praying for a smooth transition into hospital, a complication-free time with the anaesthetic, and for the doctors to truly get a sense of what is going on with Adam's hearing and vision (yep, it's a double-up of systems here!).

Also, I'm trying a little experiment this week and going gluten free with our food. I've thought about doing it for a long time, and have toyed around with it before, but never given it a serious go. There is so much debate about whether or not it works or helps, but I figure that even if it helps Adam a little bit, I owe it to him to try. You can read the best article I've ever read on the topic here. In it, a good friend of ours is the anonymous Philadelphia friend who talks at length about their search for the "right" diet for their daughter. I owe my new interest partly to he and his wife, and partly to the Horse Boy event last weekend. If I'm going to take Adam's Autism seriously, I have to also take seriously that even little steps I take might help or hurt him. I will post an update here in a week.

Finally, no scratch that. Adam is still up, and obviously still hungry so I'll leave it for now. But I do want to say that I've laughed more today than in a while, and I have the boys to thank for that. It's a good time with them, and I am looking forward to summer and all that it holds.

It takes a *blank*

Before I start, I want to say that I told my husband my next blog post would be called "It takes a village" and he said I sounded like Hilary (Clinton, of course). So, to avoid sticking to a well-used cliche, I thought I would leave it blank for you to insert any size or definition of people grouping you would like. It could be "neighbourhood", or "church", or "school board" or "bus load of strangers"-you choose. There, now how generous was that?

Now that you have chosen a grouping, the next obvious question is, "to do what?" Well, survive, I would postulate. More specifically, thrive. Grow. And particular to my point here: raise children with special needs.

I began thinking about this a few days ago when we began "Head-ButtGate". No, I'm not joking, but actually I am being a bit ironic, since that's how I cope best with life. I'm referring of course to Adam, and the drama that some of his phases can produce. We had "NoseGate" last year in Durham, when his prolific sneezes made his taxi driver squirm and nearly got me carting him to school myself (that was resolved satisfactorily for everyone involved. And Kleenex loves us.)

This year it's "Head-ButtGate", appropriately labelled because Adam likes to play a "game" where he taps his head against yours. It's sweet really, harmless--unless, that is, you are not prepared for it, or he's really having fun. Then you'll be finding a cold compress and hitting the Tylenol. If you are an adult you will survive. If you are one of the children in his class at school, you will cry and the teachers will get mad at Adam. Then, if you are one of the teachers, you will send a few pointed letters home to mum, with quite legitimate intentions to protect the other children and get Adam to stop a distressing behaviour. Then, if you are me, you will blog. Oh, just kidding.

I did get that letter, and I did write back, but I'm very happy about my letter because it clearly expresses all the facets that we deal with where any of Adam's behaviours are concerned. Do I like his negative tendencies? No. Do I encourage them? I try not to. Do I want him to continue to behave that way? Goodness, no!! However, is he being malicious? Again, no. There are reasons why Adam does what he does, and these have largely to do with the fact that:

A) he has Autism, and

B) he is non-verbal.

I am not excusing him, just trying to understand why he does what he does so that I can help him to find what he needs in more appropriate ways. I think he needs a huge amount of sensory input and therefore seeks out sensory overload in certain ways. Swinging for hours on the swings, whacking his head against a door or wall, bouncing on the trampoline...these are all things that give him some sort of kick, but he needs them at very high intensity to feel the stimulation. High enough to make any of us sick, whereas Adam will laugh.

I know he also needs to communicate, especially with his peers. And right now the amount that he does that is extremely little. I would say he wants to communicate, but doesn't know how in socially acceptable ways. He does look at his peers, he does smile at what they do now and again. But to speak to them he would tend to put his hand on their mouth, which you may remember from a few days ago makes some of his pals go off their lunch! Or, he will butt his head against theirs, if they are in a certain proximity and position in relation to him. Now the sad thing is, for him to butt another pupil's head means that he's come close enough to them to really interact. And then he goes and gives them a tap and it's all over. This is forever how it is with Adam, how it commonly is with Autism in general: the conditions are right, the scene is building up to something "normal" and great happening...and then it all goes wrong.

The reason why it goes wrong? Well, Adam doesn't know how to speak yet, so he can't say "I like you" or "I like the game we are playing." He taps his head against the other pupil's head instead. Then, to him, he gets an angry/upset reaction and is made to sit on the time-out chair or some other punishment. He is isolated, which is the opposite of what he was going for in the first place. It is a shame, and yet the whole situation is totally understandable. I can't speak for the rest of the Autistic world, but I sense it's a similar thing--the ability to respond to a social situation is diminished; the person with Autism can't cope with the stress of not knowing what to do so they react "abnormally."

So. You can't head-butt (even if that's not really what you are doing), you can't not punish it, you can't excuse the behaviour, you can't beat it out of him. So what do you do?

I try to fill the need he's trying to fill himself. I try to give him words to say in that situation, and hope that with repetition he will learn to do it for himself. I try to show him physical gestures that are appropriate to the situation that he can use to express himself. And I turn to others who can help him learn these things, and teach me how to teach him as well. This is where the *blank* comes in, obviously.

I found myself feeling grateful for each person who looks after Adam, teaches him, works with him, spends time with him, makes an effort to communicate with him, pushes him on the swings so I can sit, and yes: every person who has taken a head-butt for the team. I know we are all on a journey, and I am grateful for my *blank* who most certainly help us to survive.

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.

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.

Saturday

Saturday was a beautiful day in Aberdeen--bright blue skies, light clouds and a whippy spring wind. Just after breakfast we headed out in the car for Inverurie, the next big town along the A96. As we got into the car we were having a discussion about Adam, who didn't seem to be on top form. He was walking along slowly, with his tongue sticking out. He doesn't usually have his tongue sticking out at 10am--it's something that happens when he gets tired, like 7pm at night. I began the rundown in my mind of all the possibilities, which did not include what was conclusively proven about 10 minutes into our drive: an upset stomach.

Just over the hill past Tyrebagger woods Adam let loose with what little he'd eaten at breakfast. We paused in a bus stop to clean him up, and debated carrying on with the plan of the day. It was 50-50, but we'd already packed the bags so we carried on. In retrospect it was the absolute right decision, but at the time I wasn't so sure!

The reason we were heading to Inverurie was for Adam to have his first appointment at the Children's Bowen Clinic. I will spare you my lame summary of what they do and let you read it for yourself if you are interested. Suffice it to say we're always game to try something new, and we just hoped that Adam's blip on the way would not repeat itself in the middle of the session!

The woman who worked with Adam was great, and he did great. He tolerated her touching him without complaint for the most part, now and again waving her hand away and looking at me as if to say "what IS she doing?" I mentioned that his right nostril is constantly clogged, and she set to work on that too.

I found myself really hopeful, as I usually find myself hopeful when people are working with Adam, but of what I'm not really sure. I know that people seek treatment for their children's disabilities for many reasons: cure, improved ability, better quality of life, etc. I know for a fact that Adam's Down Syndrome will never be cured, and whether or not his Autism can be is beyond my ability to answer. I also know that I couldn't care less whether or not he's ever "cured"--he is Adam, regardless of his "condition", and that's that.

What I do hope for is that through these treatments and daily work with Adam his communication might improve, and that he'll gradually become more independent, and maybe even potty trained. I hope that his nose might unclog, and that he'll be more able to tolerate physical touch and changes to his routine. But in all of this I want to be careful and mindful of the line between wanting to "fix" him and help him. I don't need to change Adam to be "better", I need to help him in every way possible to reach his potential. His potential, not mine.

Anyway, that is what I tell myself, and it is a good reminder with Caleb as well. I don't want to make my children who I think they should be, I want to watch as they grow into the people they were made to be.

No more blips after the morning--we had a lovely day in Inverurie, a great walk in Kirkhill forest on the way home, and two very tired boys at 7:30pm!