Rambling Stim

One of Aidan's new stim's is watching me type. So, as he was sitting next to me, having a great time watching my fingers, I just started typing to keep him entertained. I had no plan, but just typed whatever popped into my head, so take that into consideration while reading. I thought I would share what goes on in my mind, because autism is on my mind 24/7. There are many times where my thoughts are not so positive and are quite frankly quite dark, but those I keep close to the vest. Hope you enjoy a little ramble...

I love you, yes I do! You are my sweet boy and you are perfect in your own Aidan way.

You have the sweetest smile and I love it when you laugh!

You have the most expressive eyes and I want more than anything to know your thoughts. Your words will soon come and one day that dream will be realized.

One day we will be able to sit down and have a magical conversation and you can tell me anything you want. Everything you have ever wanted to tell me!

My world is better because you are in it. You have brought me what I needed and have shown me the true meaning of life.

I will always take care of you and try my best to give you everything you need and want. Sometimes it feels like I am not doing enough, but believe me when I tell you I have tried. Some days have been hard, but we are getting better, one day at a time. Keep being patient with me while I deal with my own issues. They have nothing to do with you; I am just trying to take care of myself while I fight my own demons. And please be patient while I try to be patient with the world. It has nothing to do with you, because you are perfect in your own Aidan way.

I hope you are happy and continue to be happy throughout your life. All I want is what is best for you and I am working hard to figure out what that is. If you don’t like something, let me know and I will do my best to make it right. If you need something, please let me know and I will get it for you.

I love you more than words can say. You are my teacher, my love. Please be patient with your student.

You want more typing, so here goes…

This has been the most difficult journey of my life. However, I do feel that everything I have done up to this point: becoming a CVT, working all those hours for a neurologist taught me what I needed to know technically what is going on, as well as prepared me for the long hours I have put in trying to figure this autism/Dup15q thing out. You know, it is really hard to type with you laying on my arm. Seriously hard. But that is OK, because I love to snuggle with you and I love that you want to touch me. Some Moms don’t have it that good. There are many things like that I am thankful for. It could be so much worse.

You are loving and affectionate. You are able to overcome your sensory issues to where we are able to go out in public. You try so very hard and I am so proud of you for what you have accomplished. Do you know I was afraid you would never walk? Now you run and do a quick-step while walking backwards! I couldn’t even do that! You are able to choose the movie you want to watch. You are dealing with school and the tasks that they want you to do. You have interests and like to bring us into what you like. You aren’t rigid – in fact you are very easygoing. Now you are leaning on my arm and drooling down it. Nice touch.

You are going to the potty and I know that diapers will be a thing of the past (by summer? At least in the day?).
You will eat almost anything, and we don’t have to worry about detoxing your little body. Oh, how hard that would be! You are healthy and strong and you are so beautiful! You sleep pretty well throughout the night, however I would like to see you sleep in until after 6am. 4am is much too early little man!

You are sleepy and Daddy should be home soon. I guess I’ll go empty the dishwasher!

Love you my sweet boy!!!

It's only just begun...

We just came home from a wonderful week-long family vacation, I jumped online to check e-mails and noticed that Aidan has been assigned a kindergarten teacher. I went to her website and started printing out forms for the year and was shocked to see what they expect him to do this year. He is nowhere near ANY of the items on the list.
He's supposed to read a book weekly and either write a sentence or draw a picture about the book? (He is still holding a marker with an immature grasp and it is like pulling teeth to get him to make a mark on the page).
He's supposed to learn sight words, start math concepts, do a daily classroom chore (calender, weather), zoophonics, and centers, etc.. It just makes me realize that this is just beginning. His whole school experience. The teasing, frustration, the realization that he is not 'normal' and that he never will be.
I know what you are going to say - you are going to say what is 'normal?', that he is a beautiful person who is a joy. But you well know that elementary, middle and high school kids are mean, and they just don't get it.
Why did he have to have Dup15q? Why does he have to have autism? I hate the fact that he is going to have such a hard life. HAS HAD a hard life. I don't want to do this anymore...

Running scared

Tonight, just before I left for work I read a story on the 9news website. It was about a 3 year-old little boy who got away from his grandmother (who was his legal guardian) and drowned in a pond behind their house. It turns out this little boy had autism. While I read this, I could feel my head starting to spin and the color drain out of my face.
This is my worst nightmare. This could have been Aidan.
Aidan is so fascinated with water that when we were in Vail last June, when the rivers were running so fast and so high with spring runoff that the kayakers were banned from going in the river during the Teva games, he was trying to climb over the guard rail to get in the water. I had a grip on him so tight that I'm sure I left marks, and yet he was fighting me tooth and nail to get in.
He has no sense of danger and has no fear. A deadly combination that scared the hell out of me last spring, and made it so I couldn't sleep tonight. Which is why I am sitting here typing this at 2am...
I am thinking about all of the known dangers (like running into a raging river, or stepping off of a roof), but also of all of the unknown danger as well. I know we can't protect our kids from everything in the world, but what about the kids who don't know any better?
What about the kids who get talked into things - dangerous things - by other kids who think it is funny? What about losing sight of him for that second, and he is gone forever?
It's just another facet in this hand we were dealt with. Just another issue on the table. But God, please watch over our precious boy and protect him from the things that he doesn't know can hurt him.

Opposites

I said that I was going to use this space to get it all out, the ups and downs, ins and outs. I haven't done that - so get ready, because here it comes...
I feel like I am living in a body with two different people. One optimistic and grateful and the other hopelessly depressed and pessimistic.
On one side I love my sweet little boy who is so mild mannered and sweet; who has the face of an angel. He has come so far from where we began - running, "singing", trying so desperately to make his words understood. One who realizes he has power by taking our hand and showing us what he wants. This little boy who we thought would never walk is now jumping independently on his new trampoline. The trampoline that made him squeal with delight on Christmas morning. He is able to feed himself (with supervision) and can now turn on the faucet and grab a dixie cup and get himself a drink. He is the little boy who is so proud of himself for being able to walk up and down the stairs on his own - secretly while we are not paying attention.
I also have a great paying job at a time where many don't have a job at all. A job where a lot of the time is spent talking with my co-workers, doing crossword puzzles, or keeping up with the news on the web.
I have a beautiful house (which may need a little work) that we have made into our home. The basement therapy room where Aidan has done so much work is now perfect. The yard with the flowers and deck for enjoying the seasons. Away from the bustle of the city.
I have the most amazing husband, whose sense of humor makes me laugh more than I thought and longer than I thought (18+ years) I ever could. I love him with all of my heart and am so lucky to have him.
I have a supportive family, who may not always know how to help, but is always there when I ask.
So what the hell is my problem????
I have this other person inside of me. The dark one who never lets me forget what I am missing, what I will never have.
My beautiful son, who is now upstairs sleeping so peacefully, is living in a world I try desperately to understand, but will never know. As I write, my face, hands, and neck are scratched raw and bleeding from his quick and violent pinches. Even as he was asleep, he reached out and grabbed my face for one more. He seems to know that if he moves his fingers in such a way, he can inflict more damage and get my attention. If he doesn't get the reaction he wants, he tries again. And again.
Our Christmas was a little more normal, but is still light years from what it should be. Well meaning co-workers as the perfunctory question "How was your Christmas?" and I have to take a deep breath an say "Great!". I listen to the stories of how their children put together lists of things they want. Does Aidan even want things? Does he even know that things are out there to want? We are considering not doing the Santa thing at all since people with autism have a hard time with abstract things. Damn you autism! I would have been great at Christmas, the Easter Bunny, the Tooth Fairy...
It has taken the joy out of the holidays. I mean, what is the point?
My job is a job, nothing more. I occasionally think about going back to veterinary medicine to give me some sense of usefulness. But there still isn't any way I can fathom dealing with that world and the world I am currently living in. Overloaded just thinking about it. Plus, I am making more money now than I ever would starting over as a tech. I have also given up on the idea of going back to school and getting my biology degree and doing the GIS thing. Nuts. I would have been great at that too.
We are in so much debt it's almost laughable. Almost. We have 1 1/2 more years of being on the autism waiver and we are going to try to make a dent in it so we have some credit left to spend for when it ends. If we don't, we are in serious trouble.
I still love Robert. We are doing the best we can, but are both still a little checked out. It is hard, having a child who is there and yet who is not. It affects every moment and every thought, of every day.
I feel I could be doing so much more. I sit on the computer more than I should. I should be downstairs doing Son-Rise, going out and getting more volunteers, so Aidan is engaged as much as possible. I don't know if I am scared to try as hard as possible and still fail...
It's that dark side of me that whispers, "No matter what, it is and always will be your fault. Your son always was, and always will be autistic."
I am so scared for what the future holds for him. I watched a ABC show on autistic adults. Ones who have a job, who live in a group home. It was so depressing, to see these people who are considered successes on the autism scale. I wanted so much more for my son.
I have been depressed most of my life. I have always wondered why we have to live such painful lives. Now I have to live with the guilt of bringing in another life, just to suffer, just to die.
I told you this wouldn't be pretty. But this is my life. This is what is going on day in and day out.
I feel so lonely and yet I want to run away and live in seclusion, away from everything.
But that sweet little boy, upstairs sleeping, needs me (at least I like to think he does)...

So much change in so little time

I can't believe it has been so long since we have sent an update!
We had an incredible time and a life-changing experience at the Son-Rise program in February. We have met so many people from all over the world and we are keeping in touch via facebook (a black hole that is a blessing and a curse =). We are so blessed to have a family that encouraged us and supported us financially so we could go to the Option Institute to attend the training. We couldn't have done it without you!
The Son-Rise program is a home based, child centered, one on one, parent lead program where the primary focus is social development. Is is based on the attitude of love and acceptance.
It teaches you that no-one can tell you what your whole child's life will be based off of an afternoon of tests. And that your child's potential is limitless.
It lifted a great burden off of both us (and I am sure Aidan has benefited as well)!
We modified our basement into a distraction free playroom complete with an observation room. We removed all electronic toys from the house (we were supposed to remove the TV and computers too, but we need baby steps! =) I took the last 4 weeks off of work to implement the program and get everything in order. Boy have I been busy! It is like setting up a pre-school program (coming up with games, making projects, etc) from scratch! I am also trying to recruit volunteers to come in to work with Aidan. We currently have him in therapy for 10 hours a week, and we need to double that in order to run a successful part-time program. The Son-Rise program takes a lot of energy and in order to keep him engaged at the level he needs, we need some help! (We are old, you know) I am also putting together a tracking system on excel to monitor progress.
We have been requested by some family members for more information about how to interact with Aidan since he is so unique. We are also putting together a presentation for you! We will contact those of you who are interested and will get everyone together sometime soon. (Yes, I promise, sooner rather than later =). For those of you out of state, I can send you the powerpoint and we can answer any questions for you.
But now to the good part - AIDAN!!!
It has been 4 weeks since we started the program, and the change is evident in our beloved boy! Before the program, he would say "DA" for everything. We counted words at the beginning of this week and he is saying or saying approximations of 20 words! It is so exciting and motivating! We were getting discouraged and were really starting to get worried that he would be one of the 40% that never speak. But we are seeing a glimmer now that is giving him confidence and us encouragement to keep going and keep fighting!
He is also interacting with us more, is making requests (like when he is hungry, or wants to go outside), and his personality gets brighter everyday!
We can't say enough about the Son-Rise program. It has given us a whole new lease on life and has painted a bold and bright future for our son.
Thank you to those that helped make it possible!!!
We love you,

Adrienne

We made it!!!

We made it to the Option Institute for the therapy training. Just getting settled in after 12 hours of travel. Everyone we have met have been very friendly and nice....and are going through the same things we are. Some have traveled half way across the world to get here. We are looking forward to starting classes tomorrow and meeting all of our classmates. We will update with some pictures and stories in the next few days.

Love you all,
Robert and Adrienne

There's always a first time

There's always a first time - and it's not always good!

Well, we sent out 'the letter' today. A letter that we have been going back and forth whether or not we should send out.

On one hand, we really feel that Aidan will benefit greatly from this (unfortunately expensive) program. And we are so hopeful that through this program, we will finally be able to hear his little voice. Who cares if his first words aren't "Mommy" or "Daddy". We don't care if his first word is "NO!" or "Tractor!", as long as we get him to talk.

On the other hand, we hate to ask for help; especially financial help. But, we are truly having a hard time and we know that people that know and love Aidan would be upset if they knew they weren't given an opportunity when he needed help. So to those of you that know and love Aidan, we love and cherish you all. We don't know what we would do without you!

Along with financial help, people have really gone above and beyond to step in and give us much needed love, support, and their precious time. I wanted to take a moment to thank all of you that have done so.
My mom drives 106 miles once a week just to attend one of Aidan's therapies. I keep telling her that she can come down once or twice a month since it is such a long drive, but she just waves me off and tells me she wants to be there. Thanks Mom, you are my #1 support and have been in the trenches with me since day one. We Love You!
Robert's mom comes to our house once a week to watch Aidan since I went back to work full-time last year. She never bats an eye when the house is a mess, Aidan hasn't been given his afternoon snack, or when she has to cook dinner. Thanks Linda, we wouldn't have been able to come this far without your love and support! We Love You!
My dad has been coming over and taking care of the house maintenance that we haven't had the time or energy to do. He understands how emotionally drained we are and how precious little time we have - not only for ourselves, but especially for all of the things that have fallen away as a non-priority but are still important. Thanks dad for taking care of all of those things. It has lightened the load. We Love You!
And to all of our family and friends that keep in touch just to see how we are doing, invite us out to have a little fun (even though we are rarely able to go - we still appreciate it!), and for those who offer unconditional love and support - Thank you! We Love You!

I could go on and on, but since this is my first blog, I don't want to bore anyone to death on the first attempt. I can save that for later. ;)

Robert and I will try to get on regularly and update everyone on the latest (good and bad). I have a feeling that this is going to be an outlet for it all.

Aidan is doing great in school. I had a chance to observe him in pre-school today without him knowing I was there. He did great paying attention to the teacher and was very tuned-in to what was going on. Yea! Our work is paying off!

This is a marathon, not a sprint - slow and steady are going to win the race!

Love,
Adrienne