Tuesday, January 11, 2011


OK so it's been awhile since Ihave posted anything. First, I need to remind everyone including myself that I am mom to a very busy, challenging, yet beautiful and lovable little boy who has Autism. His life keeps me moving in various directions simultaneously. I don't mind, it's what came with the territory when I gave birth six years ago. Now, I don't want to complain, but being an Aunt is much easier than being a Mom. Especially when Autism is involved. Take the holidays for example. When I was simply Auntie, I would excitedly spend the night at my sister's house with her two kiddos, and help her wrap and set the stage, and of course bring all the coolest of presents. Morning would bring a tornado of excitement, and much revelry with the family. Memories I will have engraved in my heart forever. Now, that I am the mom, the holidays have completely changed for me. First, one should note that for someone with a sensory disorder and a penchant for rigidity the holiday chaos begins the moment the tree goes up, (which for us is the weekend of Thanksgiving). I, being a new Autism mom didn't get this at first. For three years in a row, Ben couldn't handle the tree being in the room, and would repeatedly would knock it over. The year he was four, he was constantly knocking the tree over and riding it like a horse. It was so ridiculous I decided, to hell with the Christmas tree, and kicked it out. But that was just the beginning that year. One big enjoyment for me every year is attending Christmas Eve service. That year I decided that we wouldn't go. Going anywhere that required sitting and being quiet just wasn't part of our life. Putting it mildly you know when our family is around. We come with chaos. At the last minute Ben was in tears that our extended family was going to church and we were not. This broke my heart and I glanced at my husband for back up. His gaze came back with the clearest of communication, "Absolutely Not". To make a long story short, I took him myself, in our sweatpants, and it ended up being a delightful surprise. In extreme contradiction to years past, there were no time outs, no chasing a child down the aisles, no stares from old fashion people stuck in their own belief patterns. Ben sat quietly in his seat, and was an Angel. On the way home he asked, "Is Jesus a Little Lamb?"...needless to say that night taught me a lot about faith, in more ways then one. Next we returned home for one of the most exciting parts of Christmas. Setting the stage for the big guy with the white beard. Lots of cookies for Santa and tons of Reindeer food. Unfortunately Ben was too maxed out. Spending time with the family, then church was too much, and the panic attack began. Getting out of the car, he started kicking and punching me, and screaming, "No Santa, No Santa". I was surprised, and couldn't understand, after all isn't Christmas like a wedding? One of the biggest most important days? And who the heck doesn't like Santa anyway. All in all, after getting him settled down the problem was this. He didn't want some guy, with toys or not, rummaging around his house while he was sleeping. And, once I thought of it, it made sense. It does sound kind of creepy. The next day I was so proud of how beautiful the house was. How fantastically perfect each gift was, and after a night without sleep I was beginning to cook my award winning, (husband approval award) brunch. Then he awoke. You could feel his tension with every step he took down to living room. Like an explosion, he started screaming, "I hate Christmas, I hate Christmas, and I'm gonna kick your butts". Stunned, Jeff and I stood with pale expressions. We're supposed to be a Norman Rockwell family, and the in-laws are almost here. Now what? With coffee in hand we settled onto the couch and waited for Ben to embrace the joy of Christmas. That year it took four days for us to embrace. He would open one toy at a time with caution. Some were greeted with negativity that went flying across the room, and some he embraced with love. But I tell you this story because as I reflect on our holiday that was just a few short weeks ago, I realize that, WOW have we come along way. That Ben has come along way. This year, there was no church service, and we didn't attend the family gala at my mom's house. Yes, I am heartbroken over this, but I am realizing that Ben just can't handle it. It's not some romantic thing where I've learned my lesson and I'm learning to make new traditions. We have done this out of survival. I have also learned that this is just a season. It will get better, as so many other things have. Hey, the Christmas tree remained upright this year. The ornaments were constantly getting moved, touched, licked, chewed and eaten, but you can't ask for everything. Yes, looking back it was a success. Ben helped to leave out the Reindeer food,(he declined when asked to help with Santa's treat) and yes, Christmas morning he popped into the living room with a delightful squeal that made my tired soul dance. I have now learned to use the holiday to my advantage. It's a great tool to measure our growth from the previous year. We're not perfect yet, but we're certainly getting better.

Monday, April 5, 2010


You know, I heard the funniest thing today, and it wasn't the first time I have heard this.... I was talking with a person about my darling son and she said to me, "It's time to grieve for the child you thought you would have, but didn't". Hmmm..I'm not sure what to think about this, or where to go with this. How do I know what I was supposed to have? Am I to grieve when I get my 5 year old out of bed for school in the morning, and he kicks me, and tells me that he is quitting school, he hates it and that the other kids are stupid idiots....Am I to grieve because I can't take my child to the playground, or the play place at the malls, or McDonald's for that matter because my child will get too overwhelmed and physically hurt another child? Am I to grieve that I have to be with my child for 24 hours a day, 7 days a week because daddy is so hurt and confused and can't handle our 5 year old? Am I to grieve that my child ended up on the front page of the paper for physically assaulting another child, and the school department never told me this happened? Am I to grieve that my 5 year old gets suspended from kindergarten because he hurt another child, and the grandmother of that other child wants, "these kids" out of our schools? Am I to grieve that we just found out that my son has a heart defect, and other medical issues going on? Am I to grieve that we just found out he has Dyslexia...Auditory Processing Disorder...and was down graded from Asperger's to Autism? Hmmmm.....as I sit and type this, my natural instinct is to defend my son and explain to everyone that there is NOTHING to grieve here. Despite all that we have went through, my son is absolutely amazing, and I see it everyday. Some days I have to see the beauty through the fog....but it's there. I don't know what kind of child I was "supposed" to have, but the one in front of me is a child that I will celebrate. Not grieve. Frankly I find that a waste of time. My son can surf, swim, ski, ride horses, smile, run, laugh, and is probably the best human GPS this side of the Mississippi. I guess if there is anything to grieve, it is the insecurities that people have about my son and the fact that they believe he won't amount to much in life. Well, I say grieve for yourself. Call your mom, are you the person she wanted you to be? It's a crazy thing this life....we can dwell on the good or bad....grieve or rejoice.....it's all what you make of it. I would be horribly embarrassed of myself if I had to look my son in the eye one day and explain to him how I grieved over the child he never was. How sad, and tragic. He and his life are bountiful. I always say that no matter how hard this life is, I am the luckiest mom in the world. So, during this Autism Awareness month, I encourage everyone to cast all the grief, shame and doubt aside, and just simply love someone with Autism. We will all be better for it.

Thursday, March 18, 2010

March 18, 2010

First blog, here goes....

Went to Boston today to see our little guys Psychiatrist. He's our go to guy that handles the medication management for Ben. We were VERY skeptical about beginning him on medication, but in the fall after he was suspended from kindergarten for physically assaulting another child, and an increasing issue taking him to stores, we were really left with no other options. Now when I tell you he was suspended it wasn't all his fault. The school was supposed to have given him a trained aide to start the school year with, and they didn't. I tell you this not to place blame on the school department, but rather to show you just how crazy and misunderstood Autism really is. Anyhow, we went for med check and all is well. He's on .75ml of Risperadone, and this has seemed to level him off quite nicely. However, this does not come without side effects. Man boobs, yes I did say that; weight gain; and who else knows....time will have to tell. After his appointment he wanted to walk around the city and look at sky scrapers. This we did, for 5 hours! Without an altercation! Definite progress! However when it was time to go, he could not leave his skateboarding friends, (a group of teenagers he was admiring)his behavior started to escalate, and two girls who were near us said out loud, "Those who don't know how to control their kids, should never be a parent in the first place." Like being Ben's mom isn't hard enough. Getting out of this situation without an altercation was appearing like fantacy, now we're adding the B*LL S**T comments from some college girls. You'll see in a few years girls, you just might be blessed with a child who has Autism. All in all a great day, 65 degrees, sunny and we made it back to our car in one piece, safe and sound. We're home now, and my little Ben is sleeping peacefully.