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.

Happy Accident - a Giveaway

I had been waiting until I finished my RDI certification to reward myself with the purchase of a book I had been wanting to read for ages. So imagine my happiness when Sami, bringing in the mail, handed me the fat yellow envelope bearing Vicki Forman's memoir, This Lovely Life. Then, imagine my surprise and happiness when not one but two copies of the book slid into my greedy hands. A quick check of the receipt confirmed that I had somehow ordered two copies. I guess that's how badly I wanted to read this book. Anyone who knows Vicki through her writing on her blog, anyone who felt moved and inspired by the short life of her son, Evan, will understand why. Indeed, I'm only so many pages into the book and I can't wait to pick it up again each evening. If only I had a whole day to devote!!!

SO! A giveaway!

I am happy to pass on my extra copy to one lucky reader anywhere in the world!! Just leave a comment on this post and I'll randomly choose a name by Friday the 23rd of October.

And if you've never left a comment here before, maybe this will inspire you? Because Look! A Prize!! All you have to do is say "Hey!"

Driving under the influence

I had two bad Sundays in a row. Days when I had to talk myself out of crying. Days when I gripped the steering wheel and forced myself to think of all the good and positive things that we have going for us. On both of these days we went for long bike rides and that helped. I see Oliver holding his body straight as his strong legs pump and the bike sways from side to side beneath him. I watch as he languidly coasts on straightaways, steering his bike so precisely this way and that. I see him aware of and reacting to all the potential dangers in his environment. And I see the look of joy and competence on his face. He is capable, more so than I dared to hope a few short years ago.

But on each of these Sundays I also have had to witness Oliver struggle with even the simplest of social interactions. I see him unable to stay sitting through the circle-time song in the Sunday School classroom where I have brought the two boys and then crying out for the box of Legos that he has spied on the shelf. I see the other kids looking at Oliver as he vocally comforts himself, also seeing when I have to leave the room with him. I see them appraising him and thinking to themselves: there is something wrong with that boy. Later, during the closing prayer -- after hours and hours of elapsed time which only read as 30 minutes on the clock -- as I stand close to Oliver, quietly urging him to stay with the others, the girl next to him refuses to hold his hand. "That's OK," I tell her, "I'll hold his hand." And it is OK, I remind myself, he will learn and she will learn. And I have to believe it to be true because as I say goodbye to the Sunday school teacher and her husband I tell them: "See you next week!" in what I hope is a cheery tone. And she must believe me because she hands me a piece of paper with her phone number written on it and says "Call me. Let's talk about what we can do to make this a good experience for Oliver." I have my doubts. Lots and lots of doubt. But I will call her. And I will try.

And I grip the steering wheel all the way home.

Dear Mr. Springsteen,

I am a longtime fan of yours. My children have also become fans of yours since your CD, We Shall Overcome, is on regular rotation at our house. Because of you, my son knows all the words to Old Dan Tucker and can sing them too. This means a great deal to me because, you see, my son has autism and has a great difficulty speaking. But he can sing Old Dan Tucker.

I am writing to you because it has come to my attention that you plan to perform in support of Autism Speaks. Please, Mr. Springsteen,reconsider. There are many ways that you can benefit the autism community that do not involve supporting an organization that portrays children like my son in such a negative light. How we choose to talk about and portray people with autism is vitally important. When Oliver first received a diagnosis I did what many parents do: I turned to the
internet. Unfortunately, the images portrayed in the media -- including those created by Autism Speaks -- paint a very bleak,frightening picture. Consequently, the time after the diagnosis was a very bleak and frightening time for our family and it remained so until I found other words and other images, images of hope and
optimism and acceptance. These are the words that are important and these are the messages that will make a difference to individuals with autism and their families.

Mr. Springsteen, I hope you hear from many parents that feel as I do and I hope you will hear our words. Autism Speaks does not speak for my family!

Very Sincerely,
Me


*************


I was alerted to this upcoming benefit over here.
If you agree with these sentiments, you can also send a note letting Mr. Springsteen know how you feel, to: mlaverty@shorefire.com

It's too late to do anything about that awful Autism Speaks video but maybe we can still send them a powerful message. 

My go-cart kid is picking up speed

Nik took the boys on their bikes to the park one day this week in the sometimes hard to fill time between dinner and bedtime. I stayed home to recharge before the brushing of the teeth, changing of clothes and the long bedtime ritual that comes with a child who has trouble falling asleep.

When the boys returned I asked Sami if he had a good time. He said that he did and that he met a new friend who lives just a block from us and that he had fun playing with the boy. I then asked if Oliver also played with this new friend and he replied: "No, he played with the older boys." The older boys? I wondered what that meant and later asked Nik about it and and he confirmed that Oliver played, although somewhat awkwardly, with some kids his own age. Nik and I were both somewhat surprised. I have seen my boy's increasing interest in other children but it is usually reserved for babies and children quite a bit younger than himself. This was most certainly a first.

Contrary to the advice of a great many experts, I have not been too pushy about putting Oliver in lots of activities with his same-aged peers. I don't believe that just by putting a child like Oliver with other children his age that he will magically start to understand how to interact with them or to model their behavior in any way. Maybe there are some children that this works for but with Oliver it would be like putting a go-cart on a speedway, the other kids are just too fast, light years ahead him. We've focused instead on helping him to understand himself in relation to family members, believing that this has to happen first, because this is how all children learn to become social creatures. And because we are willing to slow down enough that he never has to feel like a go-cart.

We home school but my house is a pretty socially-rich environment. Friends know that they can just drop by with their kids and hang out if they are looking for something to do. I'm the one people call when they need someone to watch their kids for an hour or an afternoon. So during any week, there is bound to be a time or two when it is a full house around here. Over the years I've watched as Oliver first completely retreated from visitors, usually to another part of the house altogether, then to maybe just another part of the same room. Lately, though, I've watched as he has moved with the pack -- always to the side but there nonetheless.

Towards the end of the summer I saw something new developing with Oliver. For the first time ever I saw that he was struggling to become part of the group. I watched as he watched children he knew well, studying the situation and then trying to join in, failing and becoming upset. I know that many a mother would find this upsetting, but for me it seems like a very big step towards learning how to relate to other kids. I honestly don't know if he will ever get there, the gaps are just so huge and the other kids aren't slowing down. But his desire is there and certainly nothing would be possible without that.

Last year at this time I wondered how we would do it all -- the RDI, the homeschooling -- I felt so completely off the grid and wondered if that is where I ought to be. This year I  feel more confident. I see Oliver blossoming in ways that I was afraid to ever hope for. When I used to fall into that black pit of fear I would remind myself that Oliver was developing, not typically, but according to his own timetable. And the more time I spend being his mother the more I know this to be true.