Asperger's Syndrome

It’s official. My daughter has Asperger’s Syndrome (not Ass Burgers syndrome as my foreign born friend calls it before she doubles over with laughter). I mention laughter because I use my humor to get me through these hard times. Being mom, I am the stress gauge for the family. If momma is stressed then the kids start to unravel, which makes the husband grumpy, so grumpy that he doesn’t want to walk the dog, and the dog has accidents. Oh it spirals out of control until the house is ripped off its foundation and whizzed up into the clouds like in the Wizard of Oz. A good laugh and some light heartedness help better than pills.


Dave and I went to the doctor today and she told us about her diagnosis. Asperger’s Syndrome, and mild ADHD. Once we have health care again she’ll get genetics testing, see a neurologist, and a speech and language specialist. They are very thorough. The doctor has hope for our family. She is prescribing that Alice live in a clean well organized house with lots of structure, scheduling, and tough emotion free corrections (with unwavering consistency). I’m kind of sad about putting Alice up for adoption. We will miss her around here. I mean have you met me? I am a scatter brained, lovey marshmallow mommy. I am all about cuddles and kisses, not coldness. Have you seen the mayhem that I call home sweet home? I am going to have to transform my parenting style and my house to help Alice. Does this mean that I shouldn’t go with my over the rainbow color scheme for my kitchen redesign?

Today is a happy and a sad day. I am sad for my beautiful daughter and for all of us. This is going to be a hard new adventure. Yet, I am happy that we now know for sure in which direction that we will be traveling.

Spring Fashion Week

Spring is here so are the newest fashions from New York, Paris, and Milan. I was at a fashion show this morning, no not at a funky fashion house in the city, but at my neighborhood park. I was there meeting a friend this morning with Alice, our first park outing of the season. I was kind of excited to see some of the park moms that I haven’t seen all winter. The park was packed. Alice ran in and before I could put my bag down started swinging on a swing. I looked around to for an empty spot at one of the three picnic tables to put our stuff. I looked around again. Forget the fact that people were hogging all of the tables who the heck were all of those trendy mommies? When did a cult of models move to my town? More importantly why don’t any of them look like they have ever had babies? I see tiny skinny jeans, designer sunglasses, bright spring sweater sets, spa coiffed hair, make -up and matching accessories. I look down at myself. Baggy jeans, black t-shirt, green over sized button down shirt, and huge oversized bright green St. Patrick’s Day beads. I am not blending in here. I look around with my best fake smile, isn’t their one other fat dowdy mom here? I am looking for just one friendly blotchy face?


I walk over to where Alice is swinging. I jump on the swing next to hers. All of a sudden I have the feeling that I have just entered the Lawrence school play ground in 1984. The cool girls have taken over. Nerd girls are shunned and driven into hiding by the swings. Seriously, I have just walked through the whole park, smiling as I go. No one even said hi. Come on, I am a grown woman wearing a necklace with beads the size of green golf balls around my neck, and no one even smiles at me. Come on. We are all moms here. I refuse to be intimidated by these women. I am friendly Lydia who inappropriately talks to everyone.

Alice and I jump off the swings and mosey on over to the sand box. She starts making sand cakes and I start trying to make small talk with a few moms’ hanging out by the sand box. They smile politely like someone has just farted. You know that look? Where is my friend! I left my cell phone at home. I play with Alice in hell for a few more minutes before I see that mom. The one with the cute sporty hair, who always matches her sneakers to her workout suits. I know that she and I don’t get along, but I can’t remember why? I know, shocking (I get along with everyone. She is the lone mom in Franklin that I dislike. Okay and now all of these designer manikin moms in this park) I look over again she is over there with her perky pink clad friend. Why don’t we get along? Oh forget it! That was the proverbial straw. These are not my people. I come from the mommy planet of ill fitting mom jeans and old tee-shirts. I quickly explain to Alice that we have to go to auntie’s house to see why they are late. We are in the car in 30 seconds.

Once at my friend’s house she apologizes. “Lydia, I only waited 15 minutes. I had to leave. What was up with those moms?” I smile at my friend. Who is wearing old jeans, a green tee-shirt. Ah I have found my people. I am home and I am happy.

A Nice Relaxing Chai

Like all moms I need a little escape from the stressful low budget soap opera that is my life. When the playroom that I just cleaned is suddenly trashed again and my daughter is lying in a heap on the living room floor crying because I cannot find her minuscule doll shoe that she has already lost and I have already found three times already. In these moments I need to throw a chair through a window or I need to go make a cup of my newest vice. Oh Chai. My friend introduced me to chai a few months ago. For those of you who don’t chai, chai is basically milky sweet spicy tea. You can get chai many ways. My friend’s chai was from a powder and that stuff was amazing. I have tried premade chai that you buy in a carton and mix with hot milk, also amazing but expensive. In case you don’t read my blog, or watch the news, I, like my fellow American’s am strapped for cash. I have needed to find a cheaper chai.

Which brings me to today, I am making my new Twinings brand Chai tea. As I boil the water I am exciting about escaping into a cup of creamy sweet heaven, even just for a few sips. The water is boiling. I take the tea bag out and smell the spicy goodness. Then I pull off the paper tag because I am going to let it steep and I don’t want to drink paper. Darn I pulled out the whole string. I put the bag into the cup and pour in the water and wait. Alice has improved her wail sounds more like a hiccupping snivel.

After looking and successfully locating the word’s smallest doll shoe. I go back to have my moment. I put in milk and sugar and stir. What is that black stuff? I dig out the empty tea bag. I guess the string holds the tea bag together. All of the tea is now swimming around my cup. This is my moment! This never happens on those calm happy mom commercials! I go into the cupboard and pull out my finest strainer then I grab a new mug. I strain the chai and find a large puddle on my counter. Oh no! The mug I grabbed is too small and filled over. I clean out the first mug and pour the chai back in. Eew! There is more black tea; the strainer holes were too big. I use a saucer and pour the drink back and forth between the mugs until I have only a small amount of black crap floating in it. I take my first sip to try and calm down from this stressful chai making debacle. Yuck. The drink tastes like cold dishwater. I microwave the mug and then add cinnamon and more sugar. I settle for mediocre. The drink is okay. Not terribly yummy calming and certainly not taking me away to any private stress free oasis. I swill the drink and go back into the living room to recover from making chai.

Hannah Dustin

On my drive home from Vermont on Thursday I turned off the highway to find an antique store. After travelling through miles and miles of tree lined one lane back roads that had a top speed of 30 miles an hour. Simple me followed my trusty GPS off of route 495 and wound deep into the country side for what felt like days just to find that the store was gone. Then instead of sending me back the way I had just come the GPS sent me on a new and even slower route back to route 93. Just when I had accepted that another evil GPS system had hijacked me and my car. She was turning me around and around in circles until I was confused enough to follow her directions right over the top of a mountain cliff into a fiery death in the valley bellow. I was already perplexed and quickly heading towards bamboozled and flying car-beque, serves me right for trusting my life to a another evil machine. On my way to my fiery death I saw one of those big blue road signs that usually say things like Fuel, Lodging, or Food. This sign simply read “Hannah Dustin” and had an arrow. Of course I followed the arrow. Why? Because Hannah Dustin is my ancestor and I knew that there was a statue of her somewhere in the Granite state.


Here is Hannah’s official story: Hannah Emerson Dustin B: 23rd Dec 1657 D: 6th Mar 1735 “She was captured by Indians on March 15, 1697. They killed her 1 week old daughter Martha, and forced her to walk for days until they arrived at an island in the middle of the Merrimack river about 6 miles north of Concord, NH. There she met Samuel Lennardson, a young english boy who had been there about one year. They became friends and plotted to find a way of escape. They were soon informed that they were to start traveling again to a distant indian settlement, so they determined to escape before the journey. On the 31st, they got up around midnight and killed the ten Indians and escaped down the river to Hudson, NH with their scalps to prove their story and collect a bounty.”

How cool! (Sorry to any native American ancestors out there). I was named Lydia Dustin after my mom’s great grandmother. Our Lydia Dustin was Hannah’s great-great-grand daughter. I might be a few greats off. The exact genealogy is on my old computer. My mom found the old family gravestone on her grandfather’s farm and loved the name.

Now we fast forward to this Lydia Dustin’s adventure: I followed the arrow to of all magnificent honorable places a commuter parking lot. In the commuter lot there was a nice plaque and a wooden sign that said “the Path”. I followed the path there were woods on one side and train tracks on the other, sadly the woods seemed to double as illegal garbage dumping grounds for construction waste. The path ended and by the side of a river and I saw nothing but tracks, woods, and water. Hannah was gone! Someone stole Hannah! Or perhaps they moved her away from the garbage? I walked back up the path and got into my car and drove back to the main road. As I crossed a large bridge I looked back and saw a large monument on the side of the river about 500 feet past where the path ended. I took the first right after the bridge on Hannah Dustin Lane and turned around.

I jogged down the path and walked through the woods through the trees and abandoned train tracks to a wooden railway bridge covered in graffiti. At the end of the bridge I saw a nicely mowed grassy area. In the middle of the clearing a large stone structure grew out of the earth. This isn’t a statue this is a monument. The monument is over ten feet tall with a stone figure of Hannah on top. I looked up at this glorious tribute and start to cry.

I have been hearing this family story my whole life. I have been teased just as long for being named after the Indian Slaying branch of the family tree. The story and people in it always seemed like characters in a movie. Yet, here I was standing at the very location of the Indian camp staring up at a real monument. I realized that this heroic woman risked her life and actually killed people in order to return to her family. This mother murdered people and physically scalped their heads for her children. This was the only way to ensure she would ever see them again. I thought of her sacrifice to go against her strict religious morals and taking another’s life in order to ensure her children would have their mother. She had 11 children that were waiting for her and needing her at home. After her return she lived another 38 years that she spent educating and cultivation her children. Those children went on to have children and here I was three hundred and fifty years later, her descendent, one of thousands of children’s children coming home to her. The moment was too much and I cried. Perhaps I was just a mother missing her own children, but I prayed that I would carry her legacy and always be strong and heroic for my own children and my children’s children’s children. I wiped my eyes and said goodbye vowing to return someday with Alice and Dylan, and then wondering as I walked back up the path how many of her children come home to her each year?

To learn more about Hannah click here http://www.hannahdustin.com/index2.html

Where is Our American Dream...

I am trying to be funny for you but it is getting harder and harder. Right now I am listening to my daughter scream and shriek upstairs. My daughter’s tantrums are more like psychotic episodes. She seems to lose her grasp on reality and be transformed into a frantic violent animal. My husband is trying to calm her down but all I hear is what sounds like furniture being knocked over and her earsplitting cries. If I didn’t trust my husband I would swear that he was murdering her up there. Moments like these, when she is out of control, and I am terrified, and on the verge of tears and can no longer deny that something is wrong with my little girl and I don’t know how to help her.


Her first Nursery school recommended that she be evaluated by our town’s Special Education Center, They tested her and said that she was fine. I was so relieved. Then her symptoms started to get worse, her tantrums more frequent and more ferocious. At first I thought that she may have Sensory Integration issues, I got on a wait list to see a specialist at Boston’s Children’s Hospital. They warned me that I would be on a waitlist for up to 4months just to make an appointment. Six months later, over the summer, I was still on the waitlist and desperate, Dave was still unemployed and we were losing our Cobra health care. I was afraid that once our appointment was made that we’d have no insurance. In the mean time I begged the town Special Ed Center to help me. They told me to wait until the school year began in September. Then in September they told me to wait until Alice got settled at her new school. They finally came to observe Alice in late October. They stayed there 20 minutes and told me that she was fine then implied that my parenting style may be the real issue. Oh yes they did.

In November Dave was working on a contract job and we got health insurance again. I talked to Alice’s pediatrician he thought that she may have Aspersers Syndrome. He gave me the number of a specialist that accepted our insurance at Tufts Medical Center in Boston. I could see other specialist’s sooner, but the Tufts accepted our new insurance. I was happy to wait the few months for an appointment. I mean we would only have to wait a few months, unlike Children’s hospital, who I never did hear from again. They sent me a ton of questionnaires and paperwork to fill out. They also wanted all of her testing and evaluations. By the time I got everything together and mailed out it was January. I was just thrilled to have an appointment in late February.

Alice and I went and met a great doctor. I finally found an ally that would help my daughter and my family. We saw her twice and were very impressed. Then the doctor’s office called me. My insurance rejected the charges. We have Tufts Select and they don’t take that. They take regular Tufts insurance. After talking to three billing agents at the hospital and then crying over the phone to our insurance company I was very discouraged. The bottom line is that Tufts insurance sucks! We were over paying for Tufts Select. The select means that you can only use a small “select” number of doctor’s none of whom work at the Tuft’s Medical Center. The bill we owe is now around $3,000.00. Since November we have paid about about $5,000.00 dollars to carry these useless insurance cards in my wallet. I am Shirley McLean in Terms Of Endearment sick over this! My daughter is suffering and I can't help her! 

Here is where we are now. Dave’s contract is over. We cannot afford this over priced crappy health insurance anymore. Once March is over we are uninsured. We have halted our daughter’s essential evaluation process because we cannot afford to pay the services that we have already received and we are terrified to add more. We are applying for Mass Health (our State’s health care program) but we might have too much money in assets. Being frugal and financially responsible may harm us in this process. Perhaps we should cash in our retirement and the kid's college funds and go buy matching Rolexes?  Then we'd be poor enough to get help? My daughter needs help now. Our family needs help. I am so sad and pissed off. I am having a hard time being funny these days. This is not a political blog. I know my life reads like a healthcare reform add, I am not endorsing anyone or anything, I just telling you about my life.