1. I am Tired

I came across an article the other day titled, "6 Things You Don't Know About A Special Needs Parent" by Maria Lin, a writer, editor and mother to a special needs boy. I think the article is an important one. As the parent of a special needs boy myself, it validated some of the feelings that I have, knowing that another mother, especially a professionally successful one, has similar feelings. The article is also informative for friends, relatives, acquaintances, professionals and anyone else who may ever come in contact with the parent of a special needs child. I've been thinking about the article since I saw it, and wanted to write some of my own feelings in response to it.

For tonight, I'll start with #1: I am Tired

Boy am I ever. She hit the nail on the head when she wrote "there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs." I have felt this way from very early on with Oliver. It never matters how much sleep I get, I will always be tired. For me, the bulk of my tiredness is from emotional stress. I worry about Oliver a lot, mostly about his happiness, if he's sad, frustrated or if he misses me. Most of the time Oliver is happy to go into his bedroom to "play" with his therapists, but there are days where he just doesn't want to and those days are really difficult. He cries and clings to me when I leave the room. Even though he quickly settles down and works with the therapist I am often paralyzed with anticipatory anxiety, waiting for the crying, the meltdown, the sadness when he gets frustrated or doesn't want to do something. It is just so hard to listen to and when he's having a bad week, it makes me so very weary.

I feel like I do a lot more work in general than many other parents, even during simple and "fun" activities. At the park I have to work hard to keep Oliver corralled to the area our friends are at. If we go to a friend's house, I have to continuously offer him toys or items that might be of interest to him, hoping that he will play for just a little bit longer. At playgroups I have to constantly move around the room with him so I am always within reach. I often feel like I am constantly performing in a 3-ring circus to keep Oliver entertained, and to keep one step ahead of him in an effort to avoid the metldowns. I long for the day when I can just sit on the park bench and watch him play on the jungle gym or be across the room, or even in the next room over, while he happily plays by himself or with friends. I feel like some of this is selfish, and maybe it is, but really, I am just tired. All I can do is simply carry on, surviving, and being led around by the hand, waiting for bedtime.

Current Affairs

It's been ages since I've posted on this blog. I've written a bunch of half-complete stuff, but nothing ever felt post-worthy. For some reason I always think whatever I post has to be some earth-shattering, profoundness when really all I want to say is WTF!?!? Over the months that I have been absent from my blog, there were a lot of times that I wasn't writing anything because Oliver was doing so well. He has come such an amazingly long way since beginning his ABA Therapy with The May Center in June. Despite his great advances, we certainly still struggle, but don't all parents struggle with their kids at times? Of course they do.

There have also been some really difficult times during my absence. Times that I was struggling so much that I wanted to just give up, and just getting out of bed was a huge chore. At times I wanted to write about it, but figured my blog shouldn't be so negative. And the purpose for my blog is supposed to be about Autism. Specifically, what my life is like, and how I cope with having a son with Autism. I can't be successful at maintaining a blog with this limited topic (and by successful I mean posting something interesting and worth reading a couple times a week...I'll never be a true Blogger). I'm realizing that Autism is not my entire life, even though it often seems like it is. I have a lot to say that doesn't pertain at all to Autism, my son and sometimes not even to myself. I enjoy writing and I especially enjoy sharing honesty and not being afraid to say many of the things people wish they could say. So that's it. I'm going to continue forward by writing whatever it is I feel like writing.

Today, what I feel like writing is simply a brief summary of my current state of affairs. So, here it is.

I am tired. Not like I didn't get enough sleep last night tired. This is the kind of tired that doesn't go away with sleep. It is inversely proportional to stress and will only go away with change. Lots and lots of change.

It has been months since Ken and I decided we should divorce, and that we'd both be much happier apart. Unfortunately, he has been out of work all winter which has left us struggling to pay our current bills and rent on one apartment. The possibility of paying for a second apartment is out of the question. So we are stuck. We are forced to live together, and while we are able to maintain a civil living environment, it's not fun or enjoyable for anyone involved. The tension is increasing, the desire for more separateness is increasing. There are days that I am so angry I can't stand it. I am just so stuck and there is no light at the end of the tunnel. I want space and freedom.

Oliver's therapy schedule is pretty intense right now, keeping me home a lot. Here's what he currently does:

Monday:
Speech Therapy 10-11am
ABA Therapy 11:30am-1:30pm

Tuesday:
ABA Therapy 11:30am-1:30pm

Wednesday:
ABA Therapy 9-11am and 11:30am-1:30pm

Thursday:
ABA Therapy 9-11am and 11:30am-1:30pm

Friday:
Early Intervention Playgroup 9am-11:15am
ABA Therapy 11:30am-1:30pm

He usually eats lunch and naps right after his 11:30-1:30 therapy session so we are generally homebound until 4pm most days. With home being my least favorite place to be, it's a recipe for disaster. I'm sad, angry, lonely and jealous of other people's happiness. I'm pissed off that life is so hard and so unfair.

Should I be grateful that I have a warm place to live? Of course. Should I be grateful that my son has made tremendous progress and is thriving? Of course. Should I be grateful that, overall, my life is good (well...it's not bad...)? Of course. And I am. I am grateful for those things and so many others. But today, and right now, I'm mad. One of Oliver's favorite books right now is Mercer Mayer's "I Was So Mad." Every time I read it, all I can think is, "Me too little critter, me too. It's just not fair."

More to come.

Most of the women I know don't like to be photographed. I'm guessing it's because when those photos are downloaded from the camera they don't look quite like the professionally photographed, airbrushed images seen in magazines. I know that's generally why I don't like to have my picture taken. Besides the fact that I am truly not a photogenic person, I am very self-conscious in front of the camera, and overall insecure about my body and how I look. For a long time, I have shied away from the camera, and as I get older, I am starting to regret it.

A couple of weeks ago a friend posted on Facebook that since having her two kids, she has never really felt the same, and that she feels " gross, frumpy and just yuck." She said she hasn't felt pretty or attractive in years. This initial status post began a conversation about photographic worthiness and how in general, it seems as if a lot of women (and probably men too) feel like they shouldn't bother being in photos if they aren't attractive enough. It made me sad to think that this friend, and so many other women I know, including myself, miss a lot of opportunities to record wonderful times simply because they don't like how they look, and therefore don't want it etched in stone, so to speak.

I have never really enjoyed being photographed because of my insecurities, but since having Oliver, I have tried to allow myself to be photographed more, so that he will have pictures to look at one day, and know what his childhood was like, and what his mom was like. It's not always easy. I'm heavier than I have ever been which makes me that much less confident, and I just feel awkward and unattractive. In response to my friend's post, this is what I said:

"You do look amazing, so no worries there. But even if you didn't, you'd still be worth photographing with your boys!! After all, I doubt you'd ever look at an unattractive woman and say, 'What was she thinking being in that picture with her kids?'. Just some perspective!"

And it's some perspective I really need too, and one I have continued to mull over. I tend to be very forgiving towards other people, but remain harshly critical of myself, and physical appearance is no exception. How other people look has never been of much importance to me. I pride myself on being an extremely accepting, non-judgemental person and I have a hard time living in a society that often bases worthiness on outer appearance. This isn't to say that I don't enjoy the frivolity of fashion and having or seeing nice things, it just means that I don't place a lot of importance on them in terms of another person's worth. The next step, it would seem, is to treat myself as I do everybody else, and feel some sense of self worth without placing importance on my own physical appearance.

For me, one way to work on this is to allow myself to be photographed, especially with my son. He turned two a little over a week ago, and while I do have a bunch of photos of us together, I wish I had so many more. Maybe these pictures will act as a reminder to all of us to get in front of the camera. We're worth it!

Retreat Farm Visit

Yesterday when I woke up, I decided it would be a great day to take a trip to Brattleboro, VT to visit Retreat Farm, an old farm that now has a great petting "zoo" for kids and adults alike. We hadn't been before but had heard such great reviews from friends that I've been wanting to go all summer.

The car ride wasn't too long, but Oliver disagreed and was slightly disgruntled, though he rallied when we reached our destination. Not sure what to expect, we put him right into the stroller and made our way to the barn. We soon discovered that Oliver prefers his farm animals to be in books, or in the form of plastic figures in his play barn at home. It was difficult to tell exactly how he felt about the animals. At times he seemed apprehensive or maybe scared. At other times he clearly wasn't afraid, he just didn't care about them. I find Oliver's behavior around animals to be kind of strange. We have a dog and 5 cats, yet he almost never even notices that they are there. Occasionally, when he is aware of them, he seems either fascinated or annoyed by them. He really likes to feed animals, and thinks it's funny to do so, but that seems to be about it. At the farm yesterday, he only touched the animals when I did hand-over-hand to help him pet them. He most enjoyed feeling the thick hairs of a pony's mane and feeding the giant ox.

In addition to the animals, Retreat Farm also has a great play area for kids wth ride-on tractor toys, a play farm stand with wooden play foods, many farm animal puzzles, blocks and other pretend toys, piles of clean hay and bedding with child-size rakes and shovels for them to play with, and an old silo with a big pile of dried corn kernals for kids to play in. Oliver liked the corn, but was more interested in going in and out of the silo than actually playing in the corn.

Oliver checked out the play area in about 30 seconds flat. He was sort of intrigued by the tools for a moment and he sat very briefly on one of the ride-on tractors, but that was it.

The play area was located along a fenced area of blacktop, so really, it didn't stand a chance of holding Oliver's attention. There is nothing this boy loves more than running free on pavement, waving his arms about. Sometimes he holds his arms a bit in front of him, thumbs to fingers as if he's holding something, and he moves his arms up and down as he runs. I've come to wonder if he could be pretending to steer something, though I have no idea how he would have any concept of that. Watching Oliver run on pavement is actually one of my favorite things to see him do. There aren't many areas where it is safe for him to do it, and we tend to discourage it since he can't differentiate between what is and is not safe, but when he is able, it's as if his spirit is soaring. I think he could just go and go and go for miles running like that, and he'd love every second of it.






Since we weren't able to occupy a whole lot of time with the animals or play spaces we decided we would try taking a walk on the hiking trail that starts at the farm. Surely Oliver would enjoy this since he could have some freedom to walk and run as he pleased. Wrong. First we couldn't find the start of the trail and Oliver grew more and more impatient as we walked back and forth looking for it. When we finally found it, and set him down so he could go on his own, he sat down screaming, refusing to get up. He grabbed at his shoes, so I went to investigate and saw that his feet were being pinched a little by his new shoes so I changed to his preferred sandals and thought, "Okay, here we go. He'll be ready now." And for a split second he was. He got up excitedly and took off for the start of the trail. But suddenly, as if he had just run into a brick wall, he stopped, sat down in the dirt and started screaming again. I could find nothing else wrong wth his shoes, or any other article of clothing. We picked him up and walked a bit further, hoping to entice him into the fun of the walk. I spotted some Jewel Weed and was able to get some good laughs by having him touch the very full pods so they'd "Pop!" in his face. We set him down for one more attempt at a walk, but he clung on like a monkey and screamed some more. We called it quits and headed for the car. We had packed a lunch, which we ate at a picnic table with only minor struggling to keep Oliver at the table. We loaded back into the car, me sitting in the back with Oliver to try to keep him happy, and hopefully get him napping. He drank his cup of milk and I rested my head on the arm of his car seat. He had two of his blankets bundled in his lap and while initially excited by my head on his seat, he quickly settled in and began pulling and stroking strands of my hair. He did this until we both drifted off to sleep.

Our friends were right about Retreat Farm. It is a wonderful place. A wonderful place for Oliver? Not so much right now, but overall we did enjoy our visist, and are glad we went. My favorite part of the visit was going into the "chick room" where you are able to pick up and hold baby chicks.

I could have sat on the bench in that room all day just watching and snuggling the chicks. At first I picked one up, kissed it's beak and then Ken pointed to a sign. "No kissing the chicks." Oops. Oliver preferred to just sit on the bench, watching the chicks from afar, though he did at one point venture over to a nesting box to peek in.

Almost all of the baby chicks in the room were yellow, but standing out from all the rest was one lone black chick. We had tried to show Oliver chick after chick but he did not want to see them, and pushed our hands away. When I brought him this one little black chick, his reaction was completely different. He looked right at him, smiled, and reached out to gently pet his head. I like to think that Oliver realized this chick was different from all the others. It's as if he was saying, "Hey chickie, you and me are kindred spirits. We're different from the rest of our friends. Different, but still the same."

Mayhem Returns

So, I've been on a bit of a hiatus from the blog. I've taken off the end of July, all of August, and the first days of September. This means that I've taken off more time from the blog than I've been blogging in the first place. It's not that I haven't written anything...I have. Some of it will eventually be posted when complete, but others will be deleted because the writing isn't real.

There are a couple reasons why I haven't been posting anything, and I've only recently realized the bigger reasons. The not-so-big reasons are the more obvious ones of being busy, overwhelmed by life's tasks, and so on.

So, what are the bigger reasons? First of all, things have been going generally well for a while now, at least where Oliver is concerned. I tend to be somewhat of a negative person and while I have written about some positive emotions and experiences thus far, I've largely written about the difficulty of my current life and the struggles I face. It's much easier for me to write about the hardship. That's what I know and what I am comfortable with. I'm not good at being happy, or allowing myself to revel in the good times. I want very much to be happy, have fun, and find joy in life but something often holds me back. When I am in a good place of happiness and peace, something keeps me from wanting to share it with others. It's almost as if I have this reputation of being unhappy to uphold, and something terrible would happen if I were not miserable. In the past I've always used the brief and neutral responses of "ok" or "fine" when greeted with the common, "How are you guys doing?" Lately I find myself responding differently. It's the tone that's different more than the words. The words say we're "good," but the tone says, "actually, we're GREAT!" I'm kind of liking this. And what can I say? It feels good to feel good.


The other reason I haven't been posting has to do with truth. I started this blog as a place to record my experiences living the life I've been given and in my very first post, I said that I intended to paint a very honest picture of this life. There are some things I haven't been ready to share with the world, and by not sharing them, I felt like I wasn't being honest. I realize that I could have written about any number of other things and just entertained readers with cute photos, but in doing so, I would have been faking it. It would just have been filler material until I could write what was really on my mind and in my heart. I've come to a point where I am ready to share the parts of my life I couldn't before. Or at least some of them.

One thing you may not know about me is that I am a terrible procrastinator. And with that being said, I'll finish these thoughts tomorrow.

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.