On Again, Off Again

A series of schedule changes (early release, in-service day, field trip, sick therapists, etc.) has left Oliver a little "off" lately. His emotional volitility reminds me of those pre-diagnosis days when we all walked on egg-shells, not knowing what would trigger a tantrum.

I often think back to a recurring, pre-diagnosis conversation that I had with RT (Resident Teenager):
"RT!" I would yell into the next room from the kitchen, "What are you doing?"
"Nothing!"
"Well then why is Oliver screaming like that?"
"I don't know. All I did was X,Y, and Z."
"Well, just stop it, would you?"

Somewhere along the line, RT mostly stopped interacting with Oliver because just about every time he did it ended with a version of this conversation. And I, of course, was ever on red alert trying to head off these emotional exercises before they got started or, failing that, to distract Oliver from letting small upsets escalate into full-blown tantrums. The problem in those days, however, was that we were never really sure what would cause the breakdowns. Consequently there were a lot of things we didn't do. We didn't leave Oliver with a babysitter. We didn't visit friends. We didn't take him shopping. We didn't invite people to our home. Life came down to avoiding things that were likely to cause trouble -- which was potentially everything.

But since Oliver started receiving services in late September I can probably count his tantrums on one hand and each of those were mostly attibutable to his being overly tired. Our ability to help Oliver deal with his frustrations better has stemmed from our new understanding of what lead to the tantrums and how to prepare him for the small changes that life throws at us. And the upsets these days are a far cry from those pre-diagnosis that left me clutching him in despair, both of us sobbing, exhausted and covered in vomit. His upsets now seem almost fleeting in comparison.

The fact that four "off" days are so remarkable to me means that we are having days that are more "on" than "off" and reminds me of how far we've come in the last six months. On Sunday evening we followed through on plans we had made to invite the neighbors to our house for a get-together. After a LONG day with Oliver I had briefly thought of cancelling but didn't. I am gradually coming to see that maintaining a social environment at home is important -- and theraputic -- for all of us. And so for two hours that night we entertained our friends and, much to my surprise, were entertained by Oliver. There was no escaping to another part of the house. There was no crying or hiding or hitting or biting. Instead there was my wonderfully silly little boy who grinned and giggled and who climbed on laps and just in general had a great time. Our neighbors have seen Oliver at his worst and so I felt truely delighted to share this little boy with them.

Tuesday is a school day and hopefully we are back to our normal schedule this week and the coming days will be more "on" than "off".

So? Call me an Ostrich!

Of all the decisions I've had to make since Autism the hardest, by far, doesn't even have to do with Oliver. And it is a decision I have to revisit every three months. The decision to vaccinate my Sammy is so hard that I usually choose to just ignore it altogether, keeping him warm and safe in the cocoon of our little green house and trying not to think of all the germs that are just outside those walls plotting how to get at his tiny little immune system. So, call me an ostrich if you must but this is one decision that, for the moment, is being made by default.

Today I am taking him- one month late because I couldn't face it a month ago - to the peds office for his "well baby" visit. My last visit there left me feeling slightly bruised and I almost decided to quit going altogether. Really, the "visits" are just an exercise of me forking over $35 for the jab of the needle. Without the needle do I really need to spend $35 for them to tell me that he is growing and gaining as he should be? But I don't want to go to the place where bad mothers go when they die so I will take him and pay the $35 and consider myself lucky that I get some benefit out of our insurance.

Wish me luck.

What's So Funny, Anyway?

4am.

Oliver roused the household of sleepy occupants with his loud and contagious laughter. I have no idea what was so funny but it must have been really something considering the gales of squeals and giggles coming from his room.

I've only recently read that "inappropriate" laughter is an indicator of autism and I'm sure that is well-documented and said with good reason. But I don't care; I like it. No, I love it when he does that. It is not, in my mind, a sign of pathology. It is a sign of Spring, of Hopefulness, of Character, of Light, and that there are good things that have happened to my boy in his short years with us. That there are good things to come.

With any other kid I might have gone into his room and, considering the hour, demanded: "What's so funny?" But with Oliver I didn't need to do that.

Maybe, just maybe, the laughter is the message.

Love it. ... Hate it.

The diet that is.

When I first started researching autism after Oliver was diagnosed I read about the gastrointestinal problems that affect many kids on the spectrum. I recalled a concern that I had a year earlier when Oliver's digestive system never seemed to recover from his one and only bout with ill health (which occurred, incidentally, almost immediately after receiving his last round of vaccinations -- but that is neither here nor there). I mentioned it to the pediatrician once over the course of that summer and again brought it up at his 2 year well-baby appointment 6 months later. My concerns were dismissed both times and since he seemed otherwise healthy I didn't think anything more about it. A year later things had changed: Oliver had autism. The pediatrician was still dismissive of my concerns but I needed to feel like I was doing something -- anything -- that might help.

After reading and reviewing what was available on the internet, and talking with people who had advice to offer, we decided to embark on a trial of the Specific Carbohydrate Diet. The SCD is pretty restrictive: no grains of any kind. No sweetners but honey. No soy. No a lot of things. It sounds daunting and it was. But we chose the SCD over the more standard GFCF diet because of it's promise to heal the intestinal tract by removing what is causing the trouble and allowing healthy bacteria to flourish so that the body can repair itself. After a year without symptoms the foods that have been restricted can be slowly re-introduced. So in the short term the diet can seem overwhelming but in the long-term it seems worth a chance if it promotes healing and will allow Oliver to have a somewhat "normal" diet therafter.

We have been on the diet now for almost 3 months and have truely seen changes. Without going into too much detail I can say that we have seen about 75% improvement. I expect that will improve even more now that we have found a way to get him to eat the yogurt that is an integral part of the diet. I've also found ways to make the cooking and food preparation easier for me, thanks to experience and a wonderful food advisor.

I am also lucky in that Oliver is a good eater. He always has been. From the time we first introduced solid foods at 7 months he has loved food. On the SCD everything is natural, whole, healthy, and mommy-made. And it isn't a problem to get him to eat it. (Unlike the resident teen-ager in our house!!)

But Oliver's love of food is also the reason I hate the diet (and maybe hate is too strong a word). Like any other kid in America Oliver loves pizza and candy and ice cream and these are among the things that he can't have. When we are at home it is no problem because he just naturally reaches for fruit when he wants a treat. But today, for example, his pre-school program has a fieldtrip to the pizza parlor where each kid will make their pizza and then gets to eat it. Everyone, that is, except for Oliver. And did I mention that he LOVES pizza? So I feel mean. Denying Oliver, who asks for so little in life, does not come easily to me. I know it is for his health. I know it is (theoretically) just for a year. And I know it is tied up with my own warped ice-cream-as-emotional-salve coping mechanisms. But still.

I sent him to school today with every yummy treat I could think of packed in his little back pack.

Three months down. Nine to go.

Is it my imagination, or. ...?

So what is pretend play anyway? And would I know it if I saw it? One of the deficit areas identified as a trait of autism is the lack of imaginative play. But for kids who are mostly non-verbal, like my Oliver, how do we know what is going on in their minds and that it doesn't qualify as "imaginative"? Since he can't tell us what he is thinking we watch his actions and draw conclusions. My conclusions sometimes differ from those of the others and I am only just learning to trust my intuition (and my own eyes!). But in the past, conversations with his lead therapist (whom I have grown to trust a lot) went something like me describing an action of Oliver's and then posing the question: "So, does that qualify as pretend play?" or "Does that count as an initiation?"

Oliver loves Thomas the Train -- or any train, really -- but with the TtT franchise and parents and grandparents who are willing to fork over, say, $19.99 for a train because finally there is something that captures his interest, he tends to have a lot of these items: books, videos and a growing collection of trains. Thomas videos are responsible for a lot of the repeated speech that we hear around the house. He doesn't repeat the narrative that George Carlin provides but his own spontaneous narrative that emerged the first few times he watched the videos and now repeats even when the video isn't on. But there is another thing that I have noticed lately that has me intrigued. Oliver will act out scenes from his favorite videos -- which right now happen to be TtT and Frosty the Snowman. Using play doh and his toy trains Oliver will stage scenes from the TtT video. Likewise he will use an old hat when he is reinacting scenes from Frosty. I haven't yet asked the therapist about it and I don't think I will. Okay, so it is scripted and repetitive, but still. He is using everyday items to represent the pictures that are captured by his mind and that symbolic thinking has got to be at least a building block for the imagination, wouldn't you say?

After coming to understand the playdoh dynamic I have been carefully observing Oliver for other signs of imaginative play and the conclusion I have come to is that it is impossible for me to know what is going on in that little mind of his. Just because he doesn't often play with toys in the same manner that other kids do does not mean that he doesn't have a rich imaginative life playing out in his head. (And even if he doesn't -- so what? I work with plenty of people who don't have an ounce of imagination!) I know that we all use lables and categories and types to understand our experiences, to navigate through life, and to communicate and share these things with others. But I suppose I am only starting to understand that these categories are fluid, dynamic, shifting and contextual. And most of all that they are created by people who have an imperfect understanding of the complexities that they are describing.

I was looking for a picture to add to this because I haven't posted one in awhile and I came across a series of photos that I took this fall when we went to a corn maze. Oliver loved the makeshift "drums" and it took me about 15 minutes to realize that he was acting out a scene from a bert and ernie video where ernie keeps bert awake by playing the drums. We tried to get him interested in some other activities but the last photo shows tells you how successful we were.

On Motherhood, Instincts and Hope

Last night I dreamed that I had a conversation with Oliver. I don't recall what we talked about but it was as if we had always been talking together. When I woke and the warmth of the dream receded I held at bay the tears that came threatening. My tears weren't of sadness but for the hope of possibilities realized. Hope is something that I hold to very tightly. I protect it; I nurture it. But all the while I feel compelled to remind myself not to be too explicit in my hopes for the future because, while I believe that Oliver will talk, will play ball with his father, will ride a bike, I don't want to risk being disappointed if he doesn't. The line between being disappointed in not being able to share something, like halloween, about which I have some preconceived idea, and being disappointed in Oliver, is just too devastatingly close.

Oliver has been thrilling me lately with little explosions of speech that are so clear and in context that when I hear him from another part of the house I have a hard time grasping that it is actually him. The feeling of hearing his voice so strong and clear is pure and utter joy. It renews me. When I picked him up from pre-school yesterday his aide, the teacher and the OT excitedly told me that they had introduced a game similar to Duck, Duck, Goose only this one was about Snowmen. Without prompting Oliver got up and tapped each kid on the head and said, "Snowman". He also sat in circle time for 25 minutes, which is a record for him. Hearing these little anecdotes and reading the daily communication notes and progress reports keeps me going and I think, energizes the rest of Team Oliver.

It is six months now since Autism has come to occupy me. Having left my job to focus on Oliver, it is now my predominant occupation. I wake up thinking about it, fall asleep at night having just closed the cover on the latest book, and turn the word over in my head a million times in between. I am getting good at sifting through the theories and hypotheses; separating the wheat from the chaffe. I have learned to use Oliver as my guidepost, weighing and measuring the advice of the "experts" against what I know to be true of Oliver. Learning to trust myself, to trust my intuition has been a hard won achievement. So much of that was wiped out when we received the diagnosis. Why didn't I catch it earlier? How could I have let him slip so quietly away from us without even really noticing? Why had my instincts failed me?

In one of my very first entries in this blog, I wrote about how I felt that I had found myself in a liminal state of motherhood. This is true less and less. I am finding my footing and feel much less vulnerable. I still have a ways to go but holding on to hope and learning to be thankful for where we are today is giving me a good solid place to move on from.

Validation

"You are the parents of this child and so that makes you our partners. We will have him for the next 20 years but you will have him for the rest of your lives. We want to make sure he is a success."

That was how the Director of Special Education Services for our city concluded the IEP meeting yesterday after approving my request for additional hours of in-home therapy for Oliver.

"You made an educated, informed request and I want to validate everything you said. We are here to support the parents. At this point money is not an object."

That was what she said after I made my presentation and it was discussed around the table.

I know that a lot of parents have had a different experience with the IEP process and so I feel incredibly fortunate. I went to sleep at peace last night.

Also, for those other autism bloggers out there, if you haven't watched this video (which I found courtesy of Autism Diva's site) you may find it interesting. I don't hold out much hope for getting the rest of the world to want to see things through Oliver's eyes but this reminded me of my own obligation to do so. In my struggle to make sure he is getting everything he needs I tend to forget how important this is.

I particularly like the bit about the hairless dogs!

It's a Whole New World

My mom has always told me that I need to get safety features for our house -- special knobs for the gas stove, special locks for the doors, etc. She has done this since Oliver was a baby, even before we received his diagnosis. But I never needed them. Oliver has never attempted to touch the stove or to open doors.

All that is changing and I'm not sure I like it. Yesterday when I wasn't looking Oliver opened the refridgerator and retrieved an egg. Holding it aloft he looked at me and said: "I break the egg."

"Oh no you don't," I replied and tried to grab the egg from him before he dropped it onto the hard kitchen floor.

Now the other thing about Oliver is that he is fast. And he knows how to evade capture, this boy. I dart to the right and he skirts around me to the left. He fakes me out and runs past me in the other direction. He would do great on the basketball court if he could ever figure out the dribbling thing.

So for the next couple of minutes chaos ensued as I chased my boy around the house while he held the egg precariously between two fingers, laughing and repeating: "I break the egg!"

When I finally managed to catch him and avert any slimy, sticky disasters, I figured he had earned the prize. So with supervision I took him back to the kitchen, took out a bowl and watched as he broke the egg, looking triumphantly up at me as he did so.

Whew. That was fun.

Now where's Sammy? I had momentarily forgotten about the other little guy. A quick survey of the area and I found him -- half way up the stairs!

Two firsts in one day! It's a whole new world in our little green house.

Are You My Mother?

Sometimes I feel bad for Oliver because I think he really got the wrong Mommy. Honestly, I don't think I'm cut out for this line of work. I have no patience. None. Zero. Zilch.

Sometimes, when I'm having an especially bad day, Oliver looks up at me with a kind of questioning look as if to say: "Are you my Mother?" and just like in the book I want to reply to him: "No. I am the Dog." Or, "No. I am the mommy that you got. But you were really meant to have a much more patient, understanding mommy. Your real mommy wouldn't mind sitting with you while you are on the potty for the millionth time today only to clean up an accident 5 minutes after we get up. And your real mommy wouldn't be impatient with you when you absolutely object to wearing THAT shirt for no apparent reason. Or when you insist on always playing with Percy the train in just that way.

I mull this kind of thing over when I go into the kitchen at night after my dear, wonderful, amazing husband has just cleaned up from dinner and I put away random items where they really belong because there are just certain ways that things are done because that is the way it has always been and the way it always should be. He doesn't know this because he is a man. I think this to myself as I carry the laundry that he has done to the top of the stairs and un-fold, then re-fold properly all of the towels because that is the way they should be stored in the closet. Then, before climbing into bed I straighten the sheet and put the comforter on the right way: with the dark green border at the top. I sleep better if the sheets aren't all wrinkled up and the border just goes at the top. Aesthetically, I mean. It's better that way.

I used to try to explain these things to dear husband. He would always listen patiently to me explain why something should be done a certain way and then go ahead and continue doing it his way thereafter. I stopped explaining and now just concentrate on being happy to have a true domestic partner.

Lucky for me, Oliver has exactly the right Poppi.

Navigation in the New Year

I've been on a bit of a hiatus over the past couple of weeks, dealing with all the fun stuff that comes with the season. It was by turns busy, relaxing, trying and rewarding.

With no school for Oliver and no work for me, Team Oliver switched into high gear and we began implementing phase III of PECs. This phase requires Oliver to discriminate between pictures of items in order to make a request. Previously he had one picture available and that was for the desired object. Now he must choose between multiple pictures and only gets the object if he uses the correct image. Much to the surprise of our lead therapist, who had warned me that Oliver might have a hard time with the change, he picked it up almost immediately. Watching him figure it out -- and figure it out quickly -- was such a boost. I had braced myself for lots of crying and tantrums but his complaints were relatively mild and I think mostly to let us know that, boo-hoo, we were intruding on his neatly organized life.

In addition to Phase III, we spent a great deal of time on potty-training which has been met with mostly success, we completed the Assessment ofBasic Language and Learning Skills that will help us develop priorties for the ABA portion of his therapy, and in general spent a lot of time reinforceing the things that Oliver does well. I saw a boost in his use of language -- much of it echolalic or scripted but speech nonetheless -- and he seemed generally well-focused and happy. One of the biggest changes that I've noted over the last month is that he has become very, very affectionate, demanding hugs, kisses and cuddles from everyone -- even people he doesn't know all that well. He has always been a cuddly guy but even his therapists agree that it has stepped up a notch.

On New Year's Eve we spent a few hours at the home of a neighbor where some families from our street had gathered for a meal. I had been apprehensive about it because Oliver typically doesn't do very well when there is a lot of commotion but there were no tantrums and he only started trying to escape to remote areas of the house after about 90 minutes, which was then our cue to head home. I couldn't believe how well he managed despite all the noise and commotion.

Present at the gathering was another child who is only two weeks older than Oliver. The differences between them are dramatic and I tried hard not to compare. When I allow myself to make comparisons, even for a minute, I still feel the tide of grief lapping at my ankles. There are days when I can quite clearly see where the road ahead of me becomes paved with acceptance. There are fewer and fewer days when I feel overwhelmed by the all-encompassing "autism". It is simply our new normal.

I have such great expectations for 2006. It will be a year full of new challenges and I feel ready to embrace them. I still have the feeling of being slightly adrift, without roadmap or chart, but I have also learned that I must take Oliver's hand and let him be the guide.

To those of you who have come along for the ride, who have given me support, advice, wisdom and hope over the past few months: thank you. And may the winds of 2006 show you favor.