Sunday, June 22, 2008

Quick Update and Speech

Still no stinkin' answer on the pee pee problem. He's still hurtin'. It's not as bad but it's still there. Nothing shows up in the urinalysis and the x-ray was normal. The pediatrician thinks it's just discomfort from the surgery. We have a follow-up appointment with the surgeon on Thursday, maybe he'll have some answers. I know I've said it before...but it should would be nice if Jakob could tell me where it hurt.

He's been home from the hospital for 2 weeks now. What a blur this all has been. For the most part, I'm pretty relaxed most of the time. I keep telling myself that if something was wrong, he'd have a fever, he'd be grumpy or crying, tests would come back abnormal...something would happen. So I'm just going with the flow.

Hopefully, I'll get him back in his playroom this week. We haven't stepped foot in there since the night he first got sick. I haven't wanted to push it since I know he's still not 100%. And I know I have to be completely comfortable and ready and I just haven't been yet. I'm getting closer though and I intend to go back in Tuesday...yup, Tuesday.

I finally got around to making the speech I gave a couple of weeks ago a little more reader-friendly. Here it is...without all the extemporaneous stuff I stuck in as I went along. This was given to parents and professionals at an event for Children's Hospital Department of Psychiatry...the theme for the evening was "Whatever It Takes".

(Have I ever mentioned that I love public speaking?)

Thank you so much for having me. I'm thrilled to have the opportunity to talk to you tonite about the things that are nearset and dearest to my son Jakob, his diagnosis of Autism, what it's like to have an amazing and special child like him and how you do whatever it takes, as parents and professionals, to make all the difference in the world for kids like Jakob.

It's been a bit of an adventurous week for Jakob and me. Last Thursday around noon, we brought him the ER with a suspicion that he might be suffering from appendicitis. Around midnnight that night, he had an appendectomy. Unfortunately, his appendix had burst and it was quite a mess. We're still living at the hospital and will be there until at least Sunday. For most kids, when this happens, it's a day or two and they get sent home to continue treatment there. But not for us...

Because of Jakob's Autism, we need to keep an eye on him 24 hours a day and monitor his condition very closely. Since he is still technically non-verbal, he can't tell us how he's feeling or where it hurts so we're left to watch him and make our best guess. There's a risk of infection, an abcess forming which would require a second procedure to drain it and he has a picc line inserted up his arm that runs thru a vein close to his heart thru which antibiotics are administered. That picc line would be very easy for him to pull out...we're doing whatever it takes to make sure that doesn't happen.

Jakob doesn't understand what's going on...all he knows is that it's kinda noisy (as all hospitals are), there are strange people coming in and out and they like to poke at him with cold instuments and invade his space. He doesn't feel so great and he wants to go home. There's really no way to explain to him why he's there or why all of this is happening to him. So we do whatever it takes to keep him calm, entertained and peaceful. He's doing pretty great, all things considered.

The care that we have received at Children's has been nothing short of awesome. The entire staff has done everything in their power to make us feel safe, warm and cared for. They've been so willing to work with me to not only understand Autism and how it affects Jakob but also to change the ways they normally do things to make it easier on my little man. The respect that I've been shown is so very appreciated and will never be forgotten.

I first knew something just wasn't right with Jakob when he was just an infant. He wasn't hitting his develpomental milestones....he didn't babble, he was very stiff, didn't like to be held, cried all the time, never looked at us, didn't play with toys the way they were intended to be played with and just really didn't seem to like me very much at all. As he continued to grow, all the classic signs of Autism began to appear...he lined all his toys up, he would do the exact same thing over and over, turn cars over to just watch the wheels spin, jumping, toe-walking, hand eye contact, no language.

I remember our pediatrician (not from Children's) telling us that he was just a boy and boys develop slower...that we shouldn't worry...even if he did have autism, he was only a "little Autistic". We asked for a referral for a speech evaluation and he said, "Why do you wanna put him in speech therapy? All they're gonna do is play with him...can't you do that yourselves?" Needless to say, we switched doctors...

Jakob finally received the official diagnosis at 3 1/2...the therapies began and I continued to search for answers on my own.

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 something like 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 our diagnosis/prognosis...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 our case with Autism, it was 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 they just see and experience differently than we do.

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.

It was about 16 months ago when I decided enough was enough..I was tired of feeling sorry for myself and for Jakob. I made the decision that life was supposed to be fun and darnit, I was gonna make sure that it was and I began to focus on all the things that Jakob could do and all the cute, funny "quirky" personality traits that made him who he was.

I began to really grasp that I know Jakob better than anyone...better than any doctor, therapist or specialist. I knew what he was thinking, feeling, wanting, needing...what approaches worked and which didn't. I still occasionally have to remind myself of that...and of the fact that he trusts me more than he trusts anyone...he feels safest and most at ease with me...and if I'm feeling stressed, rattled, angry, frustrated or sad, even if I try to hide it...he knows and he will feel the same way. That's why I'm always doing my best to set an example for him of how to be an easy-going, happy, peaceful and loving person...haven't perfected it yet, but I'm getting there.

Mother's intuition is so much more than a catch's a feeling so deep in our core that if we can calm down enough to listen to it, it will lead us directly to all the answers we're looking for. It will lead us to the diagnosis, to the best treatment, to the best physicians and therapists and the best way to live our everyday lives with our children.

That inner voice that we as parents have is so powerful...if we can find it, hear it, listen to what it's telling us, nothing is impossible...nothing. And life becomes so much easier for eveyone involved.

Once I really started to pay attention to that voice, everything fell into place for us. I found the autism treatment that fits us to a tee and in the 4 months that we've been doing it, my "non-verbal" 6-yr-old has gone from saying one word to saying over 10 words clearly and trying to say at least 200 words. He looks at me all the time, I get hugs and kisses without having to ask for them and instead of jumping on a trampoline all day watching videos and not caring if I'm in the same room with him, he takes me by the hand, sits me down and wants me to play with him. It's so wonderful.

I've been doing whatever it takes to listen to that inner voice...

The biggest hurdle to be aware of with that inner voice? Not living in the present moment...guilt about the past and worry about the very, very, very easy to get caught up in. I know...been there, done that. Truth is...ain't nothing we can do about what already happened and the only thing we can do about the future is do the best we can right now. The only thing we have any control over is the right here, right why don't we just live the right now to it's fullest?

It may take a little practice...but it can be done and when you do it, you'll'll feel it and you'll love it. For parents and professionals...the next time you're with your child or the child you're treating...forget about what happend 5 minutes, an hour or two days ago. Don't think about what you're gonna do later that night or next week. Forget about the laundry or the jerk who just cut you off in traffic. Just be 100% present with that child and in that matter what that moment is. There's no better feeling than really being there, and the child you're with will feel it too...amazing things can and will happen. Do whatever it takes to just be there.

I always thought that I did that...I always thought that I was a pretty good at really paying attention and being aware of Jakob's needs. Then I locked the two of us in a playroom with no tv, no battery operated toys and no computer. I began to let Jakob take the lead and do whatever he wanted. I had the room filled with all of his favorite things and turned him loose. Whatever he wanted to do, he did and I did it too. I was completely focused on him...where he was and what he was doing. I really got into the activity he was involved in...whether it was bouncing on a ball or writing lists on a white board. I joined him with lots of energy, excitement and enthusiasm. I accepted him for who he was and didn't judge him. I began to see the world thru his eyes. And he began to see me as a person who understood him completely, a good friend who not only loved him unconditionally but enjoyed doing the same things he loved to do.

It was a huge turning point for us and continues to be. When I join Jakob in his world of Autism, he's more willing to join me in my world. The 3 hours every day that I spend with Jakob in his special room is by far the best part of my day. And every day before I walk in, I do whatever it takes to remind myself to be present and live those 3 hours to the fullest...100% there in that room with my Little Man who is always doing the best that he can...whether he's jumping on the trampolines or telling me to draw a barn with a cow, a dog, a pig and a cat and 4 flowers (always 4, never 3 or 5, always 4).

A great benefit of learning to really be there is doubt just melts away. The doubt about if we're doing the right thing, the doubts about what our child can do, the doubt about what they see and what they know. We begin to truly believe in them...and we have to. As parents of these kids, we're the only ones that can and often the only ones that do. And if we don't believe in them, how can we expect them to believe in themselves? Do whatever it takes to believe...

Believing leads to faith...we discover a faith in what they're capable of, faith that all is truly well, faith that everything's gonna be ok and faith in ourselves that we are always doing our best and giving everything we whatever it takes to have faith...

This whole process of being there, believing and having faith takes care of the future. All of a sudden there is hope for the future where before there may have been uncertainty. If we're believing in our kids, having faith in them and ourselves, and being present in the moment, we know that no matter what the future brings, everybody and everything is gonna be alright. And we sincerely and completely see our child and our situation as a blessing. Not only does our child get better, we do too.

As a parent of a child who is different, and that's all he is...different than most, I have become a better person and a better parent. I know the parents here tonight know exactly what I mean...we've all heard the sayings "God doesn't give you more than you can handle" and "God gives special children to special people" and "everything happens for a reason"...all of which may very well be true.

But the choice is ours as to what to do with what's been given to us. We can be angry about the rotten hand we've been dealt, we can feel sorry for ourselves, we can expect everyone around us to make it all better or we can decide that we're gonna make the best of every moment we have and learn the lessons that our children are here to teach us.

There have been so many lessons for me throughout this journey that have changed the way I see the world, what I think is important, what I think life is all about, who I really am and what I really want.

Jakob has taught me so many things...patience, compassion, understanding, acceptance, that different is more than's cool And he's definitely taught me that the world doesn't revolve around me...I am sooooo not in charge.

He's taught me that "stuff" doesn't matter...the house, the car, the handbgs and is about relationships, loving, giving.

He's taught me that I can survive on 4 hours or less of sleep a night...

He's taught me to be grateful for everything in my not focus on all the things I don't have but appreciate everything I do have.

I've had some pretty big reminders of that one this past week...I've seen some things at Children's that brought back to mind something that my dad used to say to me all the time..."no matter how tough you think you have it, there's always someone who's got it tougher"...

I'm sure that's something that those of you who work at Children's are reminded of every day and I commend you for having the strength to take on the jobs that you have. I'm always in awe of people who choose to make their life's work changing the outcome for others. I marvel at your ability to take on the challenges that other people face and do your best to make a difference.

I know it has to be hard sometimes and I'm sure you've asked yoursleves "why did I decide to do THIS for a living". (Hey...I ask myself that pretty much on a daily basis when my alarm goes off at 4am.."what was I thinking when I decided to do a morning show????"). But you get up and you do it. You do make a difference. You do change the outcome. You do help families like mine who are so overwhelmed and confused and unsure what to do.

For some of us families, you're all that we have. We parents know what tends to happen when you have a child that's "different"...friends, family, co-workers...they distance themsleves...they don't know what to do or say to help or make it better. You become our friends and family because you do understand, you care and you help. We need you, we appreciate all that you do. We're grateful you chose to make this your life's work and there are days when we don't think we could make it without you. And maybe we don't tell you that enough...sometimes we just get too caught up in our own crap. Sometimes we just need someone to be upset with. Sometimes we need someone to blame. Ya know, we treat you like we treat family sometimes. But know that there is always love here for you...and lots of it.

So please, continue to do whatever it takes to help families like mine. Help us know that we're ok and that our kids are ok...they just need a lot of love, understanding and patience. And help us know that everything's gonna be ok. We need you...we need your knowledge, expertise, compassion and your friendship. We need to be able to come to you with our deepest, darkest secrets and our fears and we need you to help guide us to the answers. We need you to remind us sometimes that nobody knows our children better than we do. We need you to help us feel calm, cool and confident amid the chaos that some days bring us. We need you to help empower us so we can believe and have faith.

Everyone in this room is facing a challenge...some by choice, some not. And it's up to each of us to decide what to do with that challenge. I hope for everyone here that you choose to face it with confidence that you are doing the right thing, that you're always doing the best that you can and that the children that you are here tonite representing are doing the best that they can too in a world that they simply see and experience differently than we do.

Thank you so much for giving me your time tonite, I've loved being here with you. I wish you nothing but the best in your adventure and I hope you continue to do whatever it takes to teach your children what we all as parents and caregivers want most for experience, peace, love, joy and happiness. When you live in the moment, believe and have faith...all things are possible. Thank you.


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