Mini Update

I have so far been quite surprised, and pleased, at how willing and cooperative Oliver has been for his ABA therapy sessions. At the same time, I have been hesitant to jump for joy that this therapy will go smoothly. I have learned that with Oliver, very little goes smoothly. Sure there are lots of bumps in the road with any typical toddler, but I feel like I am circling an elementary school parking lot with speed bumps every 10 feet and there is no exit.

Oliver has been somewhat unsettled this week. I'm really not sure why, though I suspect he may be having some cognitive developments that are stressing him. He seems to be very anxious at times, wants me by his side at every moment and almost always holding his hand when we are not at home (unless of course he is maniacally darting away from me towards the road) and even often when we are home. I really hate seeing Oliver in this state. He is not comfortable, he is not at peace with his surroundings or himself and he is not happy. He has had an increase in some repetitive and OCD behaviors which clearly reflects his distress.

I haven't been blogging as regularly as I'd like to. It's hard to type with Oliver clinging to me, and then when I finally have some space during nap and in the evening, I just need some serious ME time to unwind from all of own stress and anxiety. I do have a few things to report, such as how Oliver's appointment with his neurologist went, and what progress has been made in therapy. I also still need to redeem myself for the "Eat Your F**king Food" post. Soon, I promise.


For now, here is a photo of Oliver from last summer. How time flies...

Welcome to Holland

I really love how the path your life takes brings you knowledge that, had your life taken a different path, you may never have had. If my son did not have Autism, I would not have started Specialty Services with the May Institute, and would not have received their substantial "Welcome" packet. I may never have been fortunate enough to read a wonderful piece of writing that was included in that packet, "Welcome to Holland," by Emily Perl Kingsley.

I also really love uncanny coincidences. Anybody who knows Oliver knows that he has a slight obcession with Sesame Street. I didn't know who Emily Perl Kingsley was, so naturally I asked my good friends Google and Wikipedia. As it turns out, Kingsley happens to be an Emmy award-winning writer for Sesame Street. She joined the Sesame Street team in 1970, and in 1974 her son Jason was born with Down Syndrome. Through her writing and activism, she is responsible for changing many perceptions about Down Syndrome, and she is also responsible for adding people with disabilities into the Sesame Street cast.

In 1987, Kingsley wrote "Welcome to Holland," a piece that describes the experience of raising a child with special needs. I read this piece for the first time yesterday, and her description could not be more accurate. While I've never been, Holland will now always hold a special place in my heart and I suppose someday, I will have to take Oliver. Perhaps Emily Perl Kingsley should be receiving some commission from The Netherlands Board of Tourism.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Finally Learning

It's been over 2 months since Oliver was diagnosed with Autism, and many more months since I suspected he had it. One would think that when your child is diagnosed with some awful malady, you would read every book you could get your hands on and search the web day and night for every bit of information you could find on the disease, its causes and it treatments. The first book I read after he was diagnosed? It was Ayelet Waldman's "Bad Mother: A Chronicle of Maternal Crimes, Minor Calamities, and Occasional Moments of Grace." It had nothing to do with Autism, and I read it simply because I heard the author speak at a local synagouge and I liked her. She told lots of great stories, she was funny, entertaining and as she talked about motherhood, she kept it real. Every woman, especially mothers, should read it.

Even before Oliver's diagnosis, I did buy a couple of books on Autism and I browsed them. I even bookmarked a few interesting websites. But for some reason, not until now, have I seriously hunkered down and wanted to learn. I really don't know what was stopping me before. Maybe I was just too lazy. Maybe I was subconciously in denial of the diagnosis, and the symptoms. Maybe I was scared of what I might learn, and what we might have to do. I'm a very observant person and just by having my eyes and ears open had already learned about some of the more common treatments for Autism, and also that there were kids that had so-called "recovered" from their Autism. I've been skeptical. I'm sure it has happened, and does happen to other people. But could it ever happen for me and for my son? I really didn't know.

Something in me has changed though, and I am now feverishly trying to learn and understand all that I can about Autism. It's all I want to do. How can I empty the dishwasher when I can be learning about a biomedical protocol for healing Oliver? How can I walk the dog when I can be studying about how a Gluten/Casein/Complex Sugar free diet might improve Oliver's eye contact, language and mood? How can I go to sleep at night when I could be searching for doctors who might actually want to help heal my son, instead of forgetting to return my calls. Naturally, since all I want to do is learn about Autism right now, it's also all I can talk about. I apologize if you are unfortunate enough to spend time with me right now, but, should you get an earful, I hope that you will be half as excited as I am that there may be hope and healing in the future for this very special boy: