The Remarkable Incident of the Button

A new set of pajamas is on the top of the Christmas list for Oliver. He is now regularly wearing an old, old pair of PJs that he inherited from Resident Teenager. (It is so hard to believe that Oliver, now seven, is wearing clothes that RT wore ten years ago!)  The pjs are a comfy flannel, green and white checks with teddy bears. And the button up the front.

Buttoning was never on my list of things to teach Oliver -- the same with tying shoelaces. That's what pullovers, tee shirts and velcro are for, after all. But one night a couple of months ago, I noticed Oliver paying particular attention as I buttoned up his well-loved pjs. Here, I said, you try it. He gave it a go but couldn't quite get it. The next night, however, he brushed my hands away as I started to button. He'd never done something like that before. Normally, he prefers for me to do things for him even when he can do them perfectly well on his own. It's a least amount of effort thing that I totally get, being that way a little bit myself now and then. But THIS time, he wanted to figure it out and I stood back.

In the moment following the one in which his fingers grasped the button and slid it through the hole and into place, Oliver raised his face to find mine -- beaming. And I was so happy for the next four buttons because I got to see that gorgeous look of accomplishment each time. That look that said: "Hey Mom! Did you see what I just did! What do you think of that?!" I looked forward to bedtime every night for a week after that, knowing that I would get to watch it over and over again.

It took him about a week longer to master the un-buttoning, but master it he did. The really incredible part of this, for me, is that I just didn't have it in my mind to teach this thing to him. But there he was, ready to learn and ready to take charge of the process. I've wondered aloud to Nik a couple of times since about what would have happened if I had tried to teach him last year. Or last Spring. I think it would have been hard. I think he would have struggled and I would have gotten frustrated.

I tend not to worry too much about Sami. He is four and a half and can't name all of the letters of the alphabet if they are out of order. And I don't really care because I know that when he is developmentally ready he will get it and if that doesn't happen until he is six or seven then so be it. I have confidence in his ability to learn and grow and that he will do it at a rate that is appropriate for him.

The Remarkable Incident of the Button kind of reminds me that the same is true of Oliver.

It's good to be reminded every now and again.

May the sleep be with you.

And also with you.

For years these have been the last words uttered between Nik and I as we drift off into a hopeful sleep. Anyone who lives with a child with a sleep disorder knows that it can be rough. The hardest part, I might add, isn't waking in the night but the long days that follow when we must still function. We must be patient and loving, responsible and alert, even when all we want to do is lay down in the fetal position and sleep a long dreamless sleep.

You'd be surprised -- or maybe you wouldn't -- just how unhelpful our doctors have been. I vividly remember one time when I was still working and in the middle of an intense five week program attended by 30 foreign diplomats for which I was largely responsible. Oliver hadn't slept in 4 nights and I was on the brink of despair. I called the pediatrician's office and couldn't stop sobbing. Bring him right in, they urged me. I walked out of there a half hour later with their sympathy and a recommendation for melatonin and benedryl. That was it. And it was not nearly enough.

Oliver is seven now and we've finally gotten someone to take the issue of our sleeplessness seriously. I'm not crazy about medicating my boy but at this point I'm starting to believe that we don't have much choice anymore. What else can we do that we haven't already tried? So. Clonidine. We started giving it regularly ten days or so ago and, after adjusting the dose a bit, it looks like we now have sleep -- seven to ten hours every night for the past five nights. I'm seeing some other differences as well -- the constant restlessness, the galloping the running -- they all seem to have abated a bit. He seems calmer and less impulsive. He has surprised me with word choices. Instead of: "I want eat," he says, "Let's go eat." Even, "I'm hungry," with the all important use of the pronoun. I don't know if that is the clonidine or the effect of some solid sleep. A bit of both? Either way, I'll take it.

I felt a little weird putting this post together. It seems so revealing to talk about my son's medications. But I spent a couple of evenings looking for blogs that mentioned the use of clonidine for children with autism and I couldn't find anything useful. Judging by the comments I got on my last post about the subject, I guess other parents are giving it a try and I wonder: why is there so much written about diets -- what we feed our kids and what we don't feed our kids, but so little sharing about medication? Why is there such a stigma? Because, really, if medication helps us get some sleep then I'm gonna feel like shouting it from the rooftops.

Thankful

This year marked the second year of our new family tradition in which we celebrated with a room full of people who probably have a whole lot less to be thankful for than many. I count myself lucky to part of a community of people who make it their business, on a daily basis, to be helpful to others. In years past, I might have appreciated this kind of community meal because it would have made me thankful for what I DO have. I might have felt good about myself for helping others less fortunate than myself. But as my family grows and we try to find our place in this world I find that my reasons for gratitude have also changed. I am not thankful because I am different from those gathered together for this meal, I am thankful because we have a place among them. This year, I am thankful for the people at my table. I am thankful for Mike, the ever-present man about town with no home, who took me aside after the dishes were done to read to me from the book he is writing. I'm thankful for Chris, the man who arrived in town only a year ago with nothing more than a bundle of clothes, who asked after my fair boy just before sitting down to eat. I'm thankful for all the people who have a hard time fitting in and finding their way in this world who were gathered together in appreciation for the truly important things in life: food, friends, family, health and God. I'm thankful for the people in this world who make it their business to see the humanity in each and every person. And most of all, I'm thankful to them all for giving my family a spot at the table.

In which it takes six hours to fill a cavity

I have a good dentist. A really good dentist. After years of seeing not so good dentists I can tell the difference. But even my really good dentist couldn't make the dental experience trouble free with my fair boy. Teeth brushing has always been a challenge for us. When Oliver was very young it was downright traumatic. It was so traumatic that I negotiated with my husband: Look, I'll do all the breastfeeding -- I'll take care of nourishing our son -- if you would only just brush his teeth every day.  Somehow he agreed and when it was time for the brushing of the teeth I always left the room.

We started taking Oliver to the dentist every three months at around age 2.5 for "happy visits" so that he could get used to the experience. I also bought a set of dental instruments at a local pharmacy so that he would get used to the tap tap tap of metal against his teeth. Those things, plus maturity, seemed to have helped.

Teeth brushing has gotten easier but a combination of sensory defensiveness and genetics led to Oliver's first cavity, which I noticed a few months ago as a small dark spot on his last right molar. When I brought it to the attention of the dentist he told me that even though he loved having our boy as a patient, there was someone in town that was better suited to work with Oliver. Based on his sensory issues, he told me, a cavity probably meant that the work would have to be done under anesthesia at the local hospital. Today was that day. 

As much as I love our really great dentist, I have to say that this new, pediatric dentist who specializes in special needs kids, was totally, incredible. His staff, his office and his entire demeanor set Oliver and I at ease when we met for the initial consult. The one time when Oliver started to get agitated I offered a suggestion and the dentist, only allowing the teeniest bit of annoyance to show on his face, changed his approach. When my suggestion worked he was quick to earnestly thank me for my help in making it a successful interaction. I knew right then that he would do a great job with Oliver.

Today Oliver did fantastic. He wasn't allowed to eat before the procedure and even though I had explained that to him the night before, I was surprised when my ever-hungry boy didn't ask for breakfast this morning. Everything went without a hitch except that he vomited the sedative all over me after I forced him to drink it despite his adamant refusals. Every time I do that I regret it. (Note to self: don't do that!!)

I also asked three staff members to get me one of the face masks that he would have to breathe through after they took him to the operating room and all of them acted like it was too difficult. Finally, I asked the dentist himself and he replied: "Great idea! Let me go fetch that for you!"  A few minutes later he returned with one and I was relieved to see that Oliver thought breathing into it was very amusing. Later the dentist congratulated me for thinking of it and said he would offer the same to other parents in the future.

When they finally wheeled Oliver away from me through the operating room doors I let myself realize just how emotional the whole experience was. The nurse standing next to me said: "There's just no two ways about it -- being a mom is hard." And he was right. It is hard sometimes. I went to the cafeteria for a cup of coffee and a yogurt and felt so weepy that I had to keep reminding myself: it's just a cavity!! In the grand scheme of all the reasons why someone might wheel my child away toward the operating room it was a very small thing.

Still, after the quarter incident early this year, I earnestly hope we don't see the inside of a hospital again any time soon!!

Reason 1001 why Rachel Rocks!

Ok, have I ever told you that Oliver has a teeny tiny little sleeping problem? Well, I mean it doesn't seem  to be much of a problem for Oliver. But for the rest of us? It pretty much stinks. Imagine if you will, what it would be like to not sleep through the night for 7 years straight. Alright, I'm exaggerating a little bit. But only a little bit.

Anyway, Oliver has been on a no-sleep bender for the past couple of weeks (yes, I said weeks). Basically, this means that he sleeps for about 4 hours and then gets up for three or four or five hours or that he just never goes back to sleep. (we see this extreme every year at this time.)

So last night was better than a lot of nights. The boy slept until 3:30 before waking every one up. I traded beds with Sami and kept Oliver company, whom I had dosed up with melatonin, hoping that he would fall back asleep before dawn. No such luck.

But here is the brilliant part. Rachel arrives at 8:30 every day!!! So I didn't even bother changing out of my pajamas because -- get this -- I could take a nap!! And I did. I slept for 90 minutes and then got up and had an undisturbed shower. Can I tell you the last time I had an undisturbed shower? I practically cried when I told Rachel how ridiculously happy a nap and a shower made me.

I'm also ridiculously happy that Rachel is totally amazing with Oliver. He loves her already and is always smiling when they spend time together.

On another note: we've been consulting with a neurologist about the sleep thing and we're trying a medication (clonidine) that I'm really hopeful will help. Keep your fingers crossed for us!

I Waiver

I interrupt all of the blog-silence to bring you breaking news from the little green house.

A couple of months ago I went to a short presentation on Virginia Medicaid waivers. I wasn't going to attend because I am in the midst of applying for the DD waiver and have been hitting some roadblocks. Oliver doesn't test well. Well, he doesn't really test at all. Almost every time we have him evaluated the report from the psychologist says some version of: "the tester could not get an accurate measure of the child's abilities. ..."  blah blah blah. But for the waiver they need a damn number. And we don't have a number. And it seems like it might be hard to GET a number. They don't make it easy on us parents. Basically, I've started down this road several times over the years, knowing that I had to do it but feeling like the whole process was impossible.

Anyway, I went to the workshop. I learned about another waiver. A waiver with NO WAITING LIST. I applied. We were screened. We were determined eligible.

Just. Like. That.

The benefits? In-home aides and respite care. I found and hired a wonderful, wonderful, local young woman who loves children and has a natural way with my fair boy. She is with us 20 hours every week and her job is just to help out with Oliver or things related to Oliver's care. The gift to me is ME. For a few hours every week I can do things that I need to do without worrying about who will take care of the boy. I can exercise. I can work. I can browse the racks for a new sweater. (No more hit and run shopping!!) I can shampoo the sofa without having to keep one eye out for the boy.

I had a hard time thinking about what all this meant as the day approached when our aide would start. OK, I thought, it is agreed then. It is understood that my boy needs pretty much constant supervision. We've known this for a long, long time. But now it is written. Yeah. On one hand I was elated to imagine free time. On the other hand it was a slightly bitter pill. I wish we didn't need the help.

But it has been a week now since Rachel has been coming to work at our little green house and more and more I see her as someone who is here to expand the possibilities. And so I think: maybe this is our time for expansion. Maybe we've contracted enough over the past couple of years. Oliver has someone new to negotiate a relationship with. He has someone new to love him. And I have someone new to trust. And yes, I feel that we are expanding. Every day a little bit more. We are growing and learning new ways to be.

I've gone to do my RDI work at a local coffee shop for a few hours everyday. I've gone early for pick up time at pre-school just to watch Sami playing through the window. I've listened from another part of the house as Rachel and Oliver concocted and cooked a yummy butternut squash soup. I've sent them on errands and they've come back flushed and laughing. I started learning German again. 

We'll see how it goes. So far, so good. There is a lot to be said for expansion when the time is right.