The Mom on the Moon

Keep climbing!

Um... well OBVIOUSLY that one, but also all the other ones too.. Anger, Alienation, Affliction, Agony are all A-words that pop onto your radar once you fall off the cliff everyone else is so nicely perched on with their "normal", or "typical" children.

Initially we went through a state of insulated denial. We would spend hours just watching Hudson, staring at him like some sort of science experiment waiting to see signs of normalcy, or of a mistake that may have been made when he was diagnosed. As a mother I felt myself falling inwards in a nose-dive of emotions.. How could someone who had pretty much done everything right (except get pregnant out of wedlock in Africa while on birth control) end up with a child that had so many issues? I had always been a strong student, a fast thinker, an avid reader.. To me my brain worked so well, especially compared to some people I know! SO how in the world was it that I could produce a child whose brain wasn't a smaller version of my own?

I became really Angry. A lot of the anger was with myself, things I maybe could have done differently, not seeing the signs earlier, not knowing enough about what I was facing and what Hudson was actually feeling. I let my anger slowly begin to build a wall around me and my heart, and when you are being irrational sometimes it feels so good to run with the things that will hurt you the most in the long run.. By allowing myself to get more and more angry it felt productive, but to what end? None. Every time I went to a party, or had Hudson around family I would see children his age and YOUNGER doing and saying the most simple things that I would have literally cut off my hand to see and hear from him. Each interaction stacked on another brick. After a while the walls were high enough in my mind that I began to feel Alienated. Of course I never was! I have an amazing, loving, and supportive family, but when you are being irrational in your mind things tend to all blur to your train of thought. I felt like I needed to stay away from get together's because it was going to be too hard for Hudson to have to interact with the other children and become frustrated, or for them to understand he wasn't like them.. What I was really doing was being totally selfish.. I was too afraid to admit to myself that it was ME. It was too painful for me to be there and see my son with other kids and realize how truly enormous the mountains were that separated him from them.

These feelings segued into more subdued states as I slowly processed things, and began to learn more about exactly what we were dealing with. I think a lot of the panic I was initially feeling started to calm also when I was able to get Hudson out of the house and into a center-based treatment program. I loved having him with me during the day but it was intensely unhealthy for him and for me to spend that much time together. Hudson needed socialization and other children to model after, as well as the benefit of other teachers and I needed to force myself to occupy my time with things other than staring at and analyzing Hudson. Win-Win. This was also around the time I found out I was pregnant with my daughter, talk about a full plate. A daughter! A little girl with bows and dresses and curls, and pink and polka-dots and....oh.my.God..Will she be okay? How absolutely exciting and absolutely terrifying.

Sending Hudson to school has by far been the best thing that has happened to him and to us, the progress and changes he has made are astonishing, and we are so proud. Triumph's like this are really important to note because the whole arena of autism can be such a black cloud. Which brings me to the next A...I want to just touch briefly upon the Agony of autism. I am not a particularly negative person, despite how I just painted myself in this entry, but I am actually extremely empathic and deeply affected emotionally by things I feel strongly about, which is why this journey has taught me to grow a much thicker skin, and to stop leap-frogging so far ahead. What I mean by leap frogging is that there have been times where I have completely broken down and freaked out because it has hit me; there is a chance I wont be taking Hudson to the DMV on his 16th birthday for his learners permit.. Or sprouting grey hairs waiting for him to come home at night.. Or adjusting his bow-ties before a prom.. Meeting and liking (or not liking) his first love.. Sending him off to College.. Or meeting the wonderful children he could have brought into this world as a parent himself someday... and on and on.. Can you feel it? One shred of it..? Its like a hot knife in your heart, only instead of killing you (which you think it might) it only makes you crazy. That's the sick-cycle you can get caught up in if you let yourself agonize. Its sad, and dark and awful, and when you are there you are locking yourself up and cheating yourself of all the small achievements and accomplishments that child will make in spite of your losses.

I refuse. I will NOT trade the opportunity to witness the things he WILL accomplish for the things I might not be sure about yet. I have chosen to trade all of the above mentioned A's for better ones. I've tried them all and they just don't work for me. I'm trading up. Customer Service better get on the ball because I am EXCHANGING Anger, Alienation, Affliction, and Agony for Achievement, Ambition, Anticipation and Aspiration. I will take cheering on Hudson for stringing a bead or doing a wooden puzzle one million times over the hollow and unproductive resignation of thinking that I may never see him drive out of my driveway in a new car, or get to see him play high school football. Maybe, just maybe if I am focused and excited enough to spend that time watching him and supporting him to string that bead, instead of sitting there blankly mourning something 10 years away it could shift things just a little.. And if i do it over and over and over... You get the idea. I am not saying that Hudson is going to string himself cured, but its all about the NOW. The support now, the focus now, and the direction now. Why worry about what may or may not happen later if you can make positive changes or impacts now. I will celebrate every achievement NOW.

Ambition... ooooohh yes. A lot of people who are very close to our nucleus know just how ambitious I am. I wont take no for an answer, and I refuse to settle or let Hudson settle for Less than. Without ambition and HOPE there is no reason to move forward. I am forever hopeful that Hudson will exceed my expectations, and so far every time I set a goal for him he blows me away. In some way its almost like he enjoys showing me up, or proving that the more I believe in him the more he has to unveil. Its awesome. I sent him to school hoping and praying that he would come home one day and be able to actually address me as "mom". I got a song "Mommy, Mommy, I L-O-V-E YOU!" screamed as he came downstairs one morning. Talk about your knees buckling. That's what I am choosing to live for.. Because if I didn't have to walk through the fire and heartache I could get "I love yous" whenever I wanted, but having to want them makes them like the little power boosters in video games that restore your life-force as you are about to die or fall off a cliff.

I am so excited and nervous and anxious for Hudson to keep going to school, keep learning, keep seeing and modeling, the anticipation is crushing. Everyday I pick him up and cant wait to hear what is going to come out of his mouth. Some days he is so tired he whips his sneakers at me while we are driving, and other days he sings these awesome songs he retains in his head like an ipod. I get so excited I try and learn them all as he sings them to me so I can sing them later on to him. Its hilarious. I think I will make it my goal to tape one and post it. I Anticipate and Aspire to see him progress. I know he will.

What I am getting at here is that going through all of the dark emotions and eventually reaching the crossroads where you can choose to move into the light is a necessary and important step for all parents of autistic and disabled children. Once you realize you can trade the fuel you used to get from being angry all the time for the fuel of love and joy you will get when your child does the littlest things they couldn't do before, you can actually begin to move forward with your life and theirs.

As parents we all have the responsibility to teach our children to be Good people, to be Happy people and to be Hopeful people, but what is more difficult than just understanding these things and explaining them, is being an example of them ourselves.

Your role model vs. Your Reality

Sometimes the idea of being a parent of two, owning a home and keeping up with the busy life of mother, wife and independent woman can appear in our minds like we just opened up the latest issue of Pottery Barn. We, as women, convince ourselves that we have made up our minds to let go of the frivolous lifestyle we enjoyed in college, we let go of happy hours, late nights, and fast food, all to create a scene which depicts children on the floor playing, a husband reading quietly on a luxe leather chair and us perfectly coiffed with an apron on in a custom kitchen.. What we don't realize is that in our quest for Martha Stewart we end up more like Martha Plimpton from Raising Hope, and when we thought we gave up Forever 21, we didn't, we just traded it for Forever 21 (lbs overweight). The point is, no matter how much you plan, picture and envision; things have a way of surprising you and becoming the exact opposite of the things you were expecting. And if you can get over the shock of it all, when the dust settles you may actually realize things turn out the way they need to.

When my husband and I found out I was pregnant we were 21, and in South Africa over the Christmas Holidays. I was there to meet his family (!!), and spend time getting to know the exciting and foreign place the man I loved grew up. There were many adventures had on our visit, a safari, a trip to the stunning Cape Town, days spent in the vineyards of Stellenbosch, and even a mini-retreat to the Draakensburg Mountains, where we stayed at a family friends resort, in the lap of luxury.

There adventure I didn't sign up for- the trip to the local pharmacy to buy a pregnancy test, because nothing says "Nice to meet you" like, "hey and I am pregnant too!"... I was taking birth control at the time- and who honestly gets pregnant on the pill?! (Well... apparently ME, and a lot of other women). If you've ever been curious to find out how to throw a wet blanket on the remainder of a month long trip to an exotic location most people never visit in their lifetimes, look no further! When the initial shock and disbelief wore off after reading the positive results of about 5 separate sticks we started to really panic. Although it may seem that up until this point that we should have had no problem adjusting to the addition of another person, especially because of our fancy trip and seeming excess of cash, in fact we were flying home to no place to live and a full remaining year of college! The week before we left on our trip the people we had been living with decided to drop a bomb on us and move out, and we were still undecided on where to go. I guess you can say we dodged that bullet, because there was no way in hell we would be able to bring a baby home into the situation we had been happy to live in; all night parties, beer cans on the floor and a bathroom with more living bacteria than a free clinic in Mexico. To my parents house we went! Believe me when I tell you, no one and nothing can prepare you or your boyfriend for the shock waves that will rock you after moving back home- head hung low, NOT finished with School, pregnant, and without a clue as to where you are going to go from there.. But we did it, and it builds character, but more importantly- it builds Humility (something I also have a lot to say about..another time).

    As we had time to adjust in the following months we focused on getting through our classes, putting together a nursery and arguing over baby names. I was scared out of my mind. Anyone close to me can tell you, I totally self medicated the entire pregnancy with a steady stream of Oreo Cookies (wtf?!), and a lot of sunbathing during the most ridiculously hot and humid Summer to hit the East coast in a long time (I'll give you a second to get that awful picture out of your mind, because the answer is Yes. I did. I ate them by the pool too...)
     Nine months, 65lbs (of Oreo's) and a Beautiful baby Boy later Wayne and I had a Brand new Beginning to begin. Throughout my pregnancy Wayne and I would joke about all of the things our Son to be, Chase/Hudson (Waynes/My name choice) would do or become; A tennis player like Dad, a free spirit like Mom, a genius that gets a totally free ride to college (don't deny it, you want that too for your kids/future kids), or maybe even his Grandpa Chris's choice- go into the military. At the end of the day when we were done dreaming up all of the possible things he could be or do, I always said a silent prayer (I do this all the time) that I didn't care if he did any of those things, i just wanted a healthy child. Hudson (I won!) Turner Tentler came into the world and we couldn't have been happier.
    Hudson was so sweet and well behaved as a baby. He was the bright spot in an otherwise stressful and scary point in our lives at that time. I began to notice as Hudson got older that he was beginning to place his hands over his ears when there were loud noises, this started around 4 months, he was always attracted to the television, constantly stretching his neck out to see it even when he wasn't facing it, and by the time he reached 11 months he hadn't even begun to properly crawl. Despite these unusual characteristics we still thought we had a very typical child. Hudsons first word was "dance", and "flower" followed soon after. I wondered why he hadn't by a year old, it may have been even later, called me mom, or mama, or Wayne dad or dada. Something was strange. At 13 months it was like we hit the first of many walls, Hudson stopped accepting most foods. Up until that point he was a veracious eater, trying and enjoying almost everything I offered him. Overnight it was like a switch was flipped and he began to only seek crunchy foods; cereal, toast, pretzels, chicken nuggets, and cookies. Initially I was jut giving him what he wanted in an effort to just see him put something in his mouth and stop him from being upset, but before I realized it or could stop it, his entire diet became "beige". Hudson went for his 15 month well visit, and like the times before that one, received at least 4 shots. He ran a very high fever, which scared the hell out of me, and he woke up in the middle of the night babbling and disoriented. But I was told and reassured that fevers were normal after vaccines. Hudson really didn't progress much between his first birthday and his second birthday, he began walking but his communication was at an absolute minimum. He didn't even point to what he wanted express himself, instead he would stand in front of either the cabinet or the fridge, or wherever else and just cry until i pulled out whatever he wanted (after guessing).

His second Birthday came and went, and at our 2 year check up it was recommended that we seek out an evaluation from Birth23. His fevers, ear covering, late walking, non-responsiveness, and loss of language were enough red-flags to his pediatrician to push us to hear the news, that he probably already knew, from a qualified agency that could begin to intervene.

Knowing your child isnt progressing and suspecting there is something seriously wrong, and even whispering the "A" word in your own mind, are nothing compared to the slap in the face you feel from a complete stranger when they say it out loud after only spending an hour with you and your kid. We took our diagnosis, shook the therapists hand, and began our slow descent into space..