Autism and our lives

Sometimes when I think of our experience with Owen and Autism, I wonder what I would think of it, if I wasn't experiencing it. It's kindof like trying to explain to someone what it's like to have a baby. It just doesn't fully make sense until it's experienced. With that said, I think that there have been a lot of good people in our lives that have supported and loved us and wanted to know more about what we're going through and how we're handling it. We are blessed that way with a lot of love and support coming at us from family, friends, ward family and specialists.

Where do I begin?  There are a few things that are challenging that you may not think about. For example, family pictures aren't going to happen anytime soon, and let me explain. Owen is a VERY easy going kid, until he gets thrown out of his routine, or if forced to do something he really doesn't want to do. Some examples: sitting for a photo, sitting period, trying a new toy or holding something with a new texture, going to bed...and so on. I know what most people are thinking. Most kids don't like to sit for pictures or go to bed, but you have no idea! With these new things comes tantrums, screaming, occasionally biting, (bedtime) brings kicking the door (for hours at a time), and a lot of frustration.

Now this is the point I want to emphasize, because where the tears usually come. Most kids can be comforted and soothed and just need mommy or daddy to hold them or lay with them, until they fall asleep. Autism is different. Owen does not want to be held, or consoled, or talked to. He wants what he wants. He understands a lot of words, but he very few of his own. And so, I can't ask him if he understands or ask if he has a tummy ache, or if he needs water or food or if he had a bed dream. There is no way to describe what if feels like when your child doesn't show you that they need you. It can be very overwhelming.

Now, I feel that I need to be clear to not paint a negative picture. My son is amazing! He has learned to communicate his own way, by leading us by the hand to what he wants, and gives occasional hugs and kisses. He is very smart and happy and laughs and likes to be tickled and in those times, sometimes I forget that there is anything different about him. I love him so much! He and Will and Zac are my whole world and I am really proud of who he is.

I just sometimes feel that because he is so chill when he is in his routine or fixated on a toy for a long period of time, it can be hard for people to understand why all of this is so hard for us. (And I understand). But, what some people don't understand is that when we go somewhere and all the kids around us are playing games with each other or playing on toys, Owen is generally running around is circles for hours or playing with the same toy for hours. It is harder for me to watch younger kids be more social than my sweet little Owen. It feels sometimes like he is missing a part of his childhood that I can't give back to him. And, if I encourage him to play, (sometimes he will like a new slide or toy) but most of the time he will drop to the floor and be inconsolable until he gets to go back to running in circles or playing with a particular toy.

We have had a real eye-opening experience with this and we have really learned alot about ourselves, compassion, kindness, understanding, patience and love through all of this. We have had Owen in occupational therapy, speech therapy, classes, community activities, seminars, conferences, and multiple doctors and specialists. We have given all of our time and energy to give him him voice and encourage him to strengthen relationships, and to see that we are still without words, difficult bedtime routines, no playing with his brother, it is really difficult to feel like what we're doing is enough. It sometimes feels like if we just love him more, or give him more opportunities to communicate, or have more patience...the list goes on. But, this is what I've learned after feeling all that hurt:

1-He is what God has made him, and that is the person that we love (and there is a LOT to love).
2-Every smile, laugh, hug, kiss and word brings us so much joy and happiness!
3-We can know that we are truly doing everything we can to give him a happy and loving childhood.
4-We try not to be afraid to try new things (ex: we went to Lagoon last Friday and had a great time!)
5-He does not have something we can fix, he only has a heart we can love.
6-Every small thing is a win.

I also have some advice for those that are not going through a life with autism:

1-Be understanding. If you see a child screaming in the grocery store or a child misbehaving, remember that you have no idea how hard that mother is probably working to help that child.
2-Don't be afraid of kids that are different. They may do thing differently, but they are like any other kid, in that they like to be praised and loved.
3-Have compassion. Sometimes that biggest hurt comes from a roll of the eyes or look of disgust.

We have been so lucky to have such good people in our lives, and a lot of happy experiences with our children. They are handsome boys with good hearts and busy feet. I hear a lot of people say that kids with special needs are special spirits, and that God must trust us. It is both comforting and hard to hear. You want the best for your kids, and sometimes they have to find what is best for them instead of you showing them. We are about to start a new program with mounds of possibilities for Owen and an opportunity for us to learn how best to help him. We don't know what is ahead for us or for Owen (and William for that matter), but we do know that God has blessed us beyond anything we could have asked for. We are loved and so are our children. Thank you for your prayers, your love, your compassion, your understanding, and your willingness to let me tell you what it's like for us. We are truly blessed!