Love and marriage... and autism

Tooth #2 gone. Yup - looks like my clenching of the teeth is back; I can tell that I have shattered yet another one of my molars. When, pray tell, will I have time to get to the dentist to get this looked at let alone taken care of with a good old American cap? There is no such thing as time lately. It looks like teeth clenching (and thus teeth shattering) and finger nail biting are my forms of stress relief. I am careful about the booze and only do the occasional glass of wine. Would not want to get myself into a pickle (pun intended). I wish I could just smoke a joint. Damned security clearance.

Marriage is tough stuff. I never thought it would be easy. I never thought it could be so hard, either. There is no time for each other when you have children which I hear is very common, right? Add to that the fact that every moment of supposed free time is spent conducting research if not doing therapy with Zach or trying to give Sophia the attention she needs and deserves. Things like intimate moments or even one lousy lazy hour spent doing nothing together are a definite thing of the past. Steve and I barely speak. What is there to say to one another? This stinks.

I had read statistics when I first realized what was going on with Zach that said 85% of marriages with children with autism end in divorce. I soon realized this statistic came from nowhere - there was no conclusive study that determined this, no census data. Someone just said it one day, and it made sense, and was spread around. Autism is excruciatingly difficult to handle and adds and inordinate amount of stress to our lives.

Steve and I have had far from a perfect marriage. We were older when we married, and the two of us were quite set in our ways. By the time Sophia was born, we both felt our lives threatened by the little diaper wearing sleep stealer, and trouble began. We have never quite been totally unified since we had kids. We have somewhat different parenting styles, which created conflict. Note: This was long before the dx of ASD. This was even before Zach was born.

We were managing, and still laughing, which to me is the barometer of "is this relationship still working?" There is just too much pain and stress to laugh right now.

Now lets look at a marriage on autism (sort of like your brain on drugs). I was going to try to explain what life is like with autism, but found this entry from another blog and decided that it was a decent summary

"...[there is ] therapy galore. Then you spend your time and energy finding the best doctors, therapists, teachers. Fighting with insurance companies, school districts, and of course yourself. You deal with guilt and questions and wondering what more you could do and should do and might do. No one will watch your kid so you can go out. If you want to pay someone to watch your kid you'll be paying double what a standard family pays. You can't do anything without a huge disclaimer and explanation. You have more medical bills than you can imagine and no money to do it. Insurance doesn't cover most therapies so you sit there and wonder whether or not you can find a way to pay for therapies that are $100+ an hour out of pocket and worth every penny. Oh, money? number one cause of divorce? HUGE issue with families with autism in the picture. Did I mention those copays and medical bills? Dont' forget extra gas. Consults. Therapy tools for home. Special diets. Supplements.

Then the stress. Every day activities can flip on a dime.

This summary doesn't include our other issues - some of them typical issues of having 2 young children,jobs, a home and some of them life's little crisis - such as Mom's lung cancer and hip issues, my about to lose my job, Sophia's disability, stolen cars, messy family situations, still fighting the autoimmune virus of several months. Let's just say with all the high priority things going on, our marriage is at the bottom of the to do list.

Steve and I care for each other, but we are not necessarily always the most complimentary people to one another when things get rough. Our situation feels so dire, and we have so little help, that we are clinging to one another for dear life out of necessity I am afraid, and not out of love. I never want Zach or Sophia to feel responsible for this, they most certainly are not. We were sort of off even before all this crap.

I keep on hoping that when we get to the other end of this tunnel, we will get a chance to meet one another, fresh and, hopefully, fall in love again. We can discover the people that we will have become, and hopefully really like who that person is, and commit to one another again. Right now we are committed to our family and our marriage as the skeletal support system to hold up the rest of the family body.

I remember when I realized that marriage was not about the commitment to the other person. People are faulted and will always let you down. If your commitment to another is based on your perceived notion of their commitment to you, your marriage will only work under ideal conditions. Marriage is about a commitment to the institution, not the other person. If you commit to the marriage, then even when the other person is failing, it will work out in the end. This is not to excuse bad marriages where there is abuse and complete unhappiness, these are different circumstances. I just laugh when I read that lack of communication, finances, or sex cause divorce. Steve and I should be toast if this were true. Divorce is caused more often than not because people give up. And sometimes, you should give up. Some things don't work. I hope that Steve and I come through in the end. I really do. It breaks my heart to think that all this shared experience could end up as baggage.

We need to laugh, but how does one do that when their two most treasured creatures are both going through so much life stuff. So that is why I write this blog. Sophia was an exemplary 2 year old troublemaker. She got into everything! At one point when she broke into the locked pantry, and spilled cocoa all over the kitchen floor, pantry, herself, the dog and lets not forget a few heating ducts, I thought I was going to lose it. I decided to pull out the camera instead. I snapped the picture and immediately sent it out to friends before I even cleaned the mess up. I realized that although it made me want to pull my hair out at the moment, I would likely laugh about it one day. I really want to laugh about all this one day. We need to laugh to get through this. Even when your heart is broken, things can still be funny, and you should still laugh.

Uh Oh - here come the books

Went on vacation, got stuck at home a bit because of tornadoes in the area. No biggie. Managed to get the kids out to the beach, the aquarium, the fossil museum, even a playdate with a nice little southern girl named Abbie. What wasn't so nice was the phone call telling me that Steve's car had been stolen. It has been recovered with no apparent damage.

Anyhow, I called a neighbor to ask her if she saw the car, or anyone suspicious around the house. She asked me how I could remain so calm during this, and I am not exactly sure. Perhaps I didn't want anything to ruin the vacation for my kids. It was fun going out to the beach and watching the kids let the waves crash into them. Thank God for technology, they reached us by cell phone at the beach to let us know the car had been recovered.

Zach was talking up a storm while we were in North Carolina. He was relatively unfazed by staying in a strange bed and slept very well. He loved exploring and running around my MIL's ranch. We were really impressed with the way he accepted the change. He said a bunch of new words while there - sail boat and bathtub come to mind. It was just terrific.

Last night we had a great moment-something I have been waiting for since he was born: I was able to sit with him and read a book! Usually he rushes through the book, doesn't go in order, and gets bored with it right away. You find yourself forcing him to read - not the pleasant cuddly moments I would like. Well last night, it was great, we cuddled, and he said so many words! Socks - he really liked saying socks which he repeated over and over again which made Sophia giggle hysterically. Cup, car, ball, cow, horse - and so many more. We read each word and pointed to the correlating picture. It was so much fun - I can't wait to do it again tonight with him. We basically are sticking with picture books for now. Once I think he has more functional language, we can move on to stories. But for now, having him understand that objects have associated words is the first step (nouns). Then we will tackle actions next (verbs) - run, walk, sit, etc. After that perhaps something more abstract such as colors (adjectives). OK OK. I am getting ahead of myself. I just can't wait to see what tricks he has in store for us next!

Thoughts on Mother's Day: Change the World

Most mother's think about all they can do for their child, knowing that one day they will break our hearts when they leave the nest. Special needs kids defy this - they very well could need us the rest of their lives. One of the things that I love about Zachy is how I still feel like he is an infant in so many ways - like I can keep him little just a bit longer. It plays into that very deep rooted instinct.

All the therapy Zach is going through is counter in some ways to a mother's instincts. Does anyone ever recall letting their child CIO (cry it out) to get them to sleep when they wake in the middle of the night? I refused to do it until Sophie left us so exhausted at age 2, I thought I would give it a try. The first night she went on and on for 25 agonizing minutes. The second night, 15 -20 minutes. The third night she whimpered for around 10. She's been sleeping soundly ever since for the most part. She occasionally goes through spurts where she climbs in to bed with us, or wants me to sleep with her, and I indulge both of us.

I have to be more careful of my indulgences with Zach. My trying to shield his innocence and disability could inhibit him from a happy life that I want him to have. I am only one person, frail and finite. I think about those days when I will be gone; who will take care of him like I do?

Sometimes during his therapy, I have to hear Zach cry while in the arms of a stranger. I will have to watch him this week as they take vials and vials of blood from him to see if he has allergies, or is it Lyme disease, or is it my very own bad genes? I know the blood draw will hurt him, and there is no way I can explain why we are doing this to him. This is breaking my heart in more ways than I can ever explain. The tears are flowing from me nonstop as I write this, if only my tears could replace his, if I could feel his pain for him, I would do it in a second.

The blood tests, much like the therapy, have some controversy. Some say why bother doing it since even if there is something detected, there are no medical courses of action to treat autism. In other words, some might say I am putting him through something for nothing. But there are treatments, and some people are relaying stories of how they help their children, some even saying the R word. (Recovery that is.)

I think of Zach's future all the time. These tests will provide us with a baseline. As much as I am tough on doctors, I do believe they will do much good in the future with autism and that there are a few good ones out there now. I pray that there will be viable options available to all children soon. Some of the techniques we are doing today will become mainstream for all pediatric practitioners in the future. And there will be innovations. Perhaps based on the findings of these tests we will have put Zach first in line to receive these innovative treatment options of the future. All these reasons to run these tests have little bearing on my heart, knowing, although only briefly, I will intentionally be letting another hurt him.

We feel guilt for the little things we do and don't for our children, thinking that these things may make some huge difference in our child's life. This is amplified many times over with a child with special needs. Why did I not save his cord blood? What about that coke I drank in month 4 of pregnancy? Is it because I let him get immunized? How about the fact that I didn't bring him to the doctor with that one fever that Sophie also had - could that have made the difference? Should I run one more discrete trial? Am I paying enough attention to Sophia? I didn't read the last therapists report...Maybe I should do flash cards? I haven't researched treatment options this week.... I trusted the manager at McDonald's that the french fries were wheat and gluten free. These questions really all boil down to just a few: Why did this happen to him? Is it something I did? Is there something I should be doing? Am I hurting him with what I am doing? Am I a good enough mother?

I look back at the last 10 months, then 8 months, then 5 ,then 2 months and I see the progress he did not make, and now (almost miraculously) has made. This makes those occasional and not so occasional burst of tears while in therapy seem easier to bear. Today, my mother and sister were both amazed at the progress. Is it the cocktail of supplements,the diet, the therapy, his own paced development? It's a little of his own pace, but I feel that what we are doing in its entirety is making a difference. The supplements and diet I believe are treating some of the underlying cause, or at least some side effects of the underlying cause. The ABA therapy acts as a rehabilitative agent, reestablishing old neurons to get them working again, training new ones to take over some of the responsibility of the damaged ones. I am very confident that what we are doing is making a difference. Others are taking note too.

In the end, instead of me teaching my child, my child is teaching me. I have learned to stand up for what is right, to look out for others who are not as blessed as myself or my children, that there are people out there to reach out to - angels among us in the form of therapists, that children are amazingly adaptive special needs or not, being around those with special needs makes you smarter and more aware of the work that needs to be done in this world. I once considered Jowonio as a preschool for Sophia, way prior to Zach's diagnosis. Jownio is an integrative setting, where some of the children are special needs and some are not. After thinking about what was best for Sophie, I decided against Jownio. I was afraid "those children" would bring my very bright and articulate child "down". What an idiot I was. As I stated in a forum once regarding the effects of inclusion classes on typical or gifted children:

I likely would have benefited from having more interaction with those who needed special ed for no other reason than to appreciate what I was given in this life.

I have always been a problem solver - likely why engineering was an OK fit. If I had seen the problems of life that some encountered earlier on in life, rather than my very white/middle class/honors classes suburban childhood - perhaps I could have started the problem solving of things that mattered to me more a little earlier.

I am filled with faults, as a person, and as a mother. But that doesn't mean I am not good enough. I am trying, running the marathon with every step being as difficult as the others, yet every step bringing me closer to knowing what I should be doing for him.

In the end, I might not be able to recover Zach, and I cannot change anything that I may have done to have caused his autism, but what good would it be to dwell on this (for me and especially for him?) I can change myself, and I have. And I will change the world I brought him to. Not the way I intended when I was a young, naive, and foolish adult and thought I was hot stuff and had something to prove, but with a heart knowing that someone (many people in fact) needs to do this for all the kids out there. People need to know what autism is, people need to care, people need to get involved even if they don't know anyone with it. The doctors need to quit being mediocre know-it-alls/nots and start being more insightful, the politicians need to make effective legislation changes to ensure the future of those afflicted and their families, the social workers need to quit worrying about peoples feelings and worry more about being effective, therapists need to call it as they see it, teachers need to get rid of their expectations and take on these children as individuals, scientists/researchers need to find a way to establish appropriate mechanisms to survey treatment efficacy since autism is a snowflake disease, and parents need to recognize what early intervention can do and get involved and never stop being involved; life is but a race, and special needs is heartbreak hill.

In the end, I don't know what contributions I will have, they may not be big, but I will try. My children deserve that. All children deserve a world where the adults in it don't give up on doing the right thing. I thank Zach and Sophia for teaching me that I am a flawed yet viable person in this world who has purpose.

I might no be perfect, but I am a good mother. And so are most of the women out there with children, especially the ones who read my whiny blog.

On Mother's Day - take a minute to listen to either or both of the following:

If I Could

Change the World

He said Grandma!

We got the little bugger to say Grandma on our last day in NC. I hope she was as tickled as I was. That will make my Mother's Day brighter for sure.

quickie

Car stolen Wed, car found Thursday.

New words: sail boat, Zachy, chip, eyes, nose, bottle.
Gonna get him to say Babcia or Grandma before we leave.

YEAH!

Why we do it

I have been criticized by only a few, but I have had to field some. Most criticism is anonymous and not meant to me specifically, but to parents who do an ABA approach. There has been specific comments made to me about repression. Well, if Zach ends up on a shrink's couch one day complainng that his mother made him play with therapists for 25 hours a week while all the other kids played by themselves likely in front of a TV - then I will gladly pay his $250 an hour (todays dollars) sessions. If he has the ability to complain about me and express himself - than I feel that my job has been done.

Damn those who decide it is their right to criticize parents for trying this is all I can say. First off - the soft fuzzy warm inviting methods did nothing for 9 months but left Zach (and the rest of the family) in tears. If they work for others - terrific. It was not working for us - 9 months was way too long.

So here is a little article I would like you to read as passed on to me by my terrific SIL Cindy. She knows how to encourage us and we really appreciate it.


From the Autism Speaks website:

In Their Own Words: I Beat Autism By Jason Ross Editor's note: The opinions
expressed herein are those of the author exclusively. The piece is unedited and
its original form, at the author's request.

Hi! I'm Jason Ross and I'm
16 now, and you'd probably just label me a normal teenage kid. I'm a junior at a great little private day school in CT and am involved in a ton of things: my sports - cross country, swim team and crew; Spanish Club, Model UN, school newspaper, jazz band, play writing and Spanish club. I hope to get my drivers license in January; I'm scared about the college process and SATs that start in the spring; and I like girls a lot, but not a girlfriend in sight.

So, all that seems pretty typical of me and my friends.But, I have a history that is different than all my friends, and I'm just beginning to get my head around what my life was like as a little kid. Apparently in July of 1995, when I was 3.5 I was diagnosed with Autism. I guess in some ways it was fortunate for me that I don't' remember a lot of it, let alone the panic that my parents tell me was going on when I was in the middle of it. Later on, sometime around when I was 12 or 13, my parents talked to me about autism, but I didn't really want to deal with it. I'm sorry to say that I guess I was too immature to want to talk about it, let alone do something for others.

Well, now I'm 16 and my best friend went on an Autism Walk. My Mom's best friend's son has autism. I read a lot and know there's a ton being done for Autism research, and to raise awareness. I read through Autism Speaks column on In Their Own Words, and I realized that there was a lot about the challenges of autism and some stories from parents who got their child through recovery. What I didn't see is stories from those of us who went through it. I just thought if I share with you my story that maybe others would have hope that they can also beat autism. Or let me be more precise, if I can share pieces of what I remember, and remind you that I'm on the other side, maybe that will be helpful to others. I hope so.

Memories of Autism:
I don't think I remember more or less than another kid trying to recall stuff from ages 3.5 – 5.5 but I have no frame of reference. I certainly don't remember what my parents describe as a house under siege; panic that I didn't speak, walk/run, nor connect with others like a normal toddler. I don't remember having speech and then losing it, or walking into parking lots because I didn't have any sense of space, and certainly don't remember not knowing who my Mom was! We have at least 20 notebooks detailing my life; I haven't looked at those in ages. Its like looking at someone else's life when I see them. But there's a few things that always linger with me and that is probably due to autism. I have a memory of feeling like I always had to work 10 times harder than anybody in order to get good grades. Now I know there are certain subjects only where I work much harder, like any subject where I have to apply principles to different concepts.

Memorizing the principles is a snap; applying them is hard – so applied physics and applied geometry means I have to work harder than anyone else just to get the B. The second thing is that I can be a 10 times more studious than my friends. I mean that when it comes to having to buckle down and study my brains out for finals, for me that's easy. My Mom thinks that's because I had to work so hard as a little kid with autism, where I apparently worked hours on end. The third thing is that I really love learn about almost anything and because I'm not afraid to experiment, amazing things happen. Friends call me a pure intellectual nerd, and I know they are just joking around. I have a theory that it started with my brain getting turned on during autism.

I recall a lot of great adults in my life; I really liked all of them. I didn't know I was special.

I did a lot at the kitchen table. I remember triangle pencils and mechanical pencils, sitting tall, learning to cut, write, and read. Reading was the BEST! Mom had these cute pencils in a triangle shape that we used when we were drawing or writing. Those were neat simply because they came in a bunch of colors. I didn't like the pencils we used later on – the point kept breaking and the pencil ripped my paper a lot - that was incredibly frustrating for me. I also remember we practiced my posture a lot, and Nancy Dyer would say “Jason, look at me... and things like Sit Tall, Sit Up. Sit Tall, Sit Up...” Scissors were a pain in the neck; I was a jerk at cutting but I guess I lot of boys are.

It never seemed like there was enough room in the holes where I put my fingers. Writing was ok I guess, and I have seen the cute notepads that they used. It has solid lines where I practiced upper case, and then a line in the middle where I'd stick the lower case of the same letter. And reading, I don't remember if I struggled or not. What I do remember is that in first grade I had the best best teacher Mrs. Shuhi, and by spring of first grade I reached a goal in her class.

To this day, I'm in love with reading and I remember being so proud of reaching
Mrs. Shuhi's goal. Mom had a bunch of expressions that I remember: On using utensils correctly, it was “Palms Up, Thumb Up”; on walking up and down stairs,
“Light feet. Light Feet”, and on going right and left it was done in the car with a funny clicker she had, “Right right, right right right... and Left left, left left left.”
Birthdays were always great. I remember my 4th birthday, where Princess Priscilla came to my house and I had a ton of kids over. It was great.
My nursery school was Little Brick; it was fabulous, I made friends there, and my nanny got a job there too!

Sports memories are fuzzy. I loved skiing always but throwing a ball and ball stuff in general never came easily. I didn't throw a ball like a boy does until I was at least 8. I finally made it to the major leagues in baseball and then called it quits. That was my equivalent of making it to the Olympics.

My Conclusion:The darkness of autism – all that therapy and disciplined training are from another world I don't remember too well. Yet, I know its part of me today. I can work very very hard, and spend hours practicing, reading or writing. A lot of this probably comes from my autism training. I know my Mom wanted me to enjoy learning for learning sake,and that's really who I am today. I'm sorry that Autism caused so much pain in my home, but I'm also a better person for it. I know I'm a lucky teenager with a future in something cool. I know if I work hard, good things happen. And I know that I can work 10x harder than others if that's necessary. Oh, and one more recent anecdote. I went to look at a college recently because I have to start thinking about what I want for colleges in my senior year. The person in
Admissions asked me what is one thing that I'd like to let her know. Because I was writing this, I said casually that I had autism as a kid. She said that couldn't be possible; no one beats Autism. I told her I did. She said - again - that I was mistaken. I said – again- that am one of a new generation that beat Autism. I was pretty upset; I know that I'm a lucky one and I better help get the word out. I beat Autism and I'm proud of it!!

I hope I have been helpful.

Greetings from North Carolina

Well, I typed in a whole post only to have it deleted when I hit the save button. uugghh I am currently writing this post from the Bath public library. (How many libraries do you know of where they allow dogs in - in fact the librarian has dog biscuits in her desk. That is the sort of town Bath is.) Access to the internet is limited around here; there are no hot spots, in fact, there aren't any lukewarm ones either. :) OK, so little old Bath North Carolina, NC's oldest town and former playground to the notorious Blackbeard the Pirate may not have the latest tech gadgets around. But I will tell you what it does have - as many ABA's in a 50 mile radius as Syraucse. sad, sad, sad It also has a Montessori school that is growing so fast that they are building a whole new facility. Seems like they are pretty with it to me.

I have been staying in touch with Zach's two ABA therapists asking them how to manage through a few particular situations. Even on vacation, we can't let our guard down. Believe it or not, it was the therapists who actually contacted us to see how things are going. That is the sort of dedications we need and makes me know we are doing the right thing. I just love them!

Anyhow, with limited internet access I haven't been able to post much, although I am logging some of our events on our laptop which I hope to upload at some point when we get back home.

But there is one thing I just could not wait to post about - because it just has me tickled. So this morning, my MIL (mother-in-law) made playdate with a neighbor's granddaughter for Sophia. They came down to pick her up, and I told Zach to say bye to Sophie to which he said:
"Bye Sophie!" Sophie didn't hear him and went off skipping with her new little friend. I held back the tears, since these people would probably think I was nuts since they don't know our situation. However, just like Sophie skipping off, I felt like I could have done the same. My heart was certainly skipping. He said his sister's name today. Awesome.