Monday, February 25, 2008

February 25, 2008..what I said...

Wow...I'm sleepy.

It's been very busy...we had our Kick-Off Luncheon for the Inaugural Cincinnati Walk Now for Autism with Autism Speaks on Saturday. Between preparing for that, work, Jakob and his playroom and one other big project I'm working on, I haven't had much time for sleep let alone sit down to write. I've missed it. And since I'm so wiped right now, I'm just gonna share the speech I gave at the luncheon. This is it, for the most part...of course, I ad-libbed a little from the podium...but you'll get the jist...

It's been 3 years since we received the diagnosis that changed our lives...even tho I knew when Jakob was just an infant that the diagnosis was coming, it was a scary day. Looking back, it wasn't the diagnosis that was so was the prognosis..and the never-ending stream of "I don't knows"....will Jakob ever speak? I don't know. Will he be able to take care of himself? I don't know. Will he ever go to a typical school and have friends? I don't know. Will he ever look at me or even care that I'm in the same room as him? I don't know...

The prognosis turned into an overwhelming wanting and needing of help and not knowing where to go for it. There was this unbelievable feeling of urgency because all the difference could be made with early intervention so something had to be done and fast. It was the prognosis that caused us to stop looking at all the things Jakob could do and to focus on all the things he couldn't do and to try to figure out how we were gonna fix it.

So what came next was inevitable...the anxiety, stress, panic, sadness, grief, insecurity, uncertainty, fear, anger, frustration, guilt...the are we gonna pay for everything he needs? How are we gonna to live like this? What therapies do we try? Will it ever get easier or will it always be like this?

Only parents who have gone thru this can truly understand. We learn quickly that family, friends and co-workers don't know how to help, don't know what to do for us. Some may try but few can truly comprehend what our lives are like. We become an island in a sea of autism...with little to no support.

Somewhere along the line, many of us lose sight of the beautiful child we brought home from the hospital...the perfect little being who was the greatest gift we'd ever been given...the perfect addition to our family.

And as it is with all things in life, what we focus on just gets bigger, it expands and grows. And it's tough to not focus on what's right in front of us day in and day out...the screaming, the crying, the tantruming, the no sleeping, the running, jumping, throwing, crashing, the doing all the things we don't want them to do and not doing anything that we want them to do......the sleep deprivation...the sheer exhaustion.

With all of that mixed in with the rollercoaster of emotions, we no longer see the child who's just doing the best that he or she can to manuever thru a world that makes no sense to them...a world of sights and sounds that bombard them from every direction...a world filled with people everywhere who are so unpredictable...a world where they don't understand how to communicate or relate to people...we lose ourselves in the prognosis...

All we can think about is how to fix it, how hard it all is and how people need to understand our children, how they need to understand our lives and how everyone should accept our children and us. Some of us even kick and scream ourselves in an attempt to get people to listen to us and understand something we ourselves haven't fully grasped.

It can become a vicious cycle that can easily take over every minute of every day and all we can try to do is make it thru.

But there is hope...there is always hope. Our kids can get better, they do get better...some even recover. There's a father in the room today whose son did recover...ever met a parent whose child recovered?? Amazing and inspiring story...and if you'd like to meet him, I'd be happy to introduce you to him after the presentation so he can tell you what he did to help his son.

But it's up to us in this room...those of us most affected by Autism. We have to believe in our children if they are to believe in themselves. We have to make our world look so interesting and fun to them that they want to leave their world of autism and join us in ours.

Some of the greatest things that can happen to a parent with a child who has autism is to be able to see their child for who he or she is....the beautiful, amazing, brilliant person who's simply a little different and to love every one of those understand how they see our world, to get inside their heads...and to love their autism because it is a part of who they are. I love that Jakob likes to write lists...the same words, in the same order with the same colored markers over and over. I sit in front of him and make lists with him and doing that has become one of the highlights of my day. All the simple things that bring him so much joy now bring me joy. I have grown to love every moment I get to spend with him in his world...even jumping on a trampoline or bouncing on a ball...for long periods of time.

If we can see our kids as a blessing...not just say it but feel it to our cores...and start to look for the lessons that they are here to teach us, we will change the outcome. I know Jakob has taught me patience, understanding, compassion, he's forced me to re-think my priorities in life and he's definitely taught me that the world does NOT revolve around me and I am not in charge. I'm sure there are many more lessons to come and I look forward to the learning them. The sooner we learn the lessons, the sooner we all can heal and grow into better people and better parents. Our lives become more peaceful and we can experience true joy. It is absolutely possible for each and every one of us.

We can show the world that our kids are ok...and so are we. We're a strong bunch, we autism moms and dads and it's our strength that will see our kids through...our stength and our never-ending belief in them.

I'm so excited to have Walk Now for Autism with Autism Speaks coming to Cincinnati. We have such an amazing autism community here and we have this opportunity to all join together for a nice slow-paced walk and a day at the Zoo. I couldn't imagine a better place. It's a day for all of us affected by autism...parents, family, teachers, therapists, doctors, friends and the community to come together and enjoy our see them for who they are, to love them unconditionally, to understand their lives and ours and to support each other. It's a day where everyone will see the beauty in our children. It's a day of acceptance, love and celebration. And of course, to raise much needed funds to give families the support we desperately need. The kind of support that relieves some of our daily stresses of where to go, what therapies to try and how are we gonna pay for it. Relief so that we can stop the panic, the stress and the fear so we can spend our time focusing on the amazing little people our children truly are...and enjoy every minute of it...

Autism's time to listen...

Monday, February 04, 2008

February 4, 2008...crazy calm


We're trucking along and life is good. Jakob and his playroom...a beautiful combination.

Ya know, I never go back and read any of my old entries so I don't have any idea if I've ever really explained what we're doing. Put simply...Jakob spends his days in a special playroom in our basement with minimal distractions. It's quiet, uncluttered and full of stuff that he loves...minus the computer, tv or any toy that uses batteries. The focus in the playroom is it's Jakob's World (even more-so than my house already was) and we do whatever he feels like doing. We join him in his world. If he feels like tearing paper, we tear paper. If he wants to jump on the trampoline, we jump. If he wants to be tickled or squeezed, we tickle or squeeze. One of his favorites is writing lists on his whiteboard. When he makes his lists of colors, we make a list of colors. We're building a relationship and it's working. He loves that we love doing whatever it is that he's doing and he's taking a sincere interest in us. We're building a bridge.

And what I'm noticing is he's looking at me so much, real eye-to-eye, engaged eye contact. He's taking an interest in everything I do. He likes having me around. He takes me by the hand and invites me to play with him. And he's so much more willing to do the few things I ask him to do without putting up a going to the bathroom, taking a bath, going to bed. There's more peace in this house and we're having so much fun.

We worried a little bit about keeping him in the playroom...would he stay in there all day?? No problem. We've done 9, 10, 11 hours straight in there. We've even come upstairs after 8 or 9 hours and he's gone back on his own. He loves that room. It has everything he needs and he loves it best when someone is in there just being with him.

Outside the room, I'm totally crazed...Christmas decorations still up, working, helping plan Walk Now for Autism with Autism Speaks on May 3, trying to find volunteers for the playroom and the list goes on. But all is well, it truly is. Jakob is in the happiest place he's ever been and that makes everything ok. The tree can stay up til June.