Friday, February 12, 2010

So, I can't believe 2 whole weeks has gone by since I was at the Hope In Action conference in San Francisco.

But that weekend was amazing. I always love hearing Dr. Woeller and Julie, I had not heard Stan Kurtz speak so that was great. But more than anything I was so happy to hear from other parents. We can get so much out of our meetings. I had someone comment on my last post about a crazy day I had. I don't want to mislead people into thinking I have got it all figured out, because I struggle just like everyone else. But, this is 3+ years into this biomed journey and life has gotten easier in many respects. I sometimes wonder if the world can see my "Autism scars" though. I look back on the last few years and feel a bit battle worn. The years of no sleep, constant tantruming, I can still hear his screaming in my head when I think about it. We couldn't go anywhere without a meltdown or a freak out, so I avoided MANY things. We lived and breathed his schedule because disruption was so bad and he was so explosive. I did my presentation last week at one of my son's therapy clinics and used before and after biomed pictures. The before picture brings me to tears. Such a vacant look, I was standing in front of him calling his name, nothing. There were times when I thought, very early on, that I was just not cut out to be a mom. And I felt so isolated. I didn't have the awesome group of moms back then, heck I didn't even really understand Autism or know that my son would be diagnosed with it. And every other mom I knew made it look so easy. Why wouldn't my child sleep? Why did my child cry inconsolably all the time? Why was this so HARD for me?

I looked into these moms' eyes at the conference and saw that many were where I was back then. For me, I have cried thousands of tears, tears of regret, guilt, anger, frustration, exhaustion, you name it. And then you start to go into type A fixit mode. And I haven't looked back since. I still grieve, I still do the "why me" sometimes but much less now. I actually think now "why not me?". These amazing people were placed into our lives for a reason, and I think we are the perfect people to help them through their own journey with Autism. There have been really dark periods in my life as I have tried to understand and navigate my emotions as they relate to Autism and what my son has to go through each day. I like to think we made it through the other side better equipped for what comes next, whatever that is. But I wonder if other parents can see it. But to look into another mom's eyes and say "I know how you feel" and mean it. To be able to tell all the seemingly crazy things (to people without a child with Autism anyways) you've had to do to help and protect your child. We had to build a dutch door to keep our son safe at night since he was up at all hours and we have a 2 story house. Even WITH a gate at the top of the stairs I worried about him falling down them or getting into something without us hearing. I developed the ability to wake up just minutes before he would (I know, crazy, right?). I would wake with a pounding heart, adrenaline racing. It took years for that to go away. The level of stress was out of control. Some of the ways to calm him, from the outside, could look like forms of torture or abuse - smooshing with pillows and "whacking" against soft couch cushions for that input his little body craved. Of course these were all suggested by professional occupational therapists and if you saw the huge grin on his face you'd know he loved it but at first glance, CPS could have been on my doorstep, lol. I had no clue what was going on with my son, with my self, with my family as a whole for a period of time. I told you, I don't have it figured out either. But, I have learned to adapt better. We've done a lot to help my son feel better and his behavior has changed. I always tell people I would rather spend the time to fix him special meals from scratch than deal with non stop tantruming, that is my choice. Seems like a no brainer for me. His screaming was almost too much to bear at times. It was hard. The hardest thing I have gone through to date. No one is equipped for this journey. But you strap in and try and keep moving forward. And with my son's recovery comes a little bit more of my old self back. Some of the stress goes away. We can function better as a family. And yet talking to another Autism mom still heals my soul just a bit. Another person who has "been there, done that". We don't have to share all of our stories to know that we understand each other and even though every child is so unique, these struggles are not. We all have those emotions that tear at us.

And then we hear our child speak. Or maybe they make and hold eye contact, or what about potty training, no matter the age. You cheer louder than anyone out there. You just know how hard they work to accomplish what comes so easily to their peers and even their siblings. It was hard seeing our friends' kids pass him right by, even though they are the same age. But wow what a rush when they master something. You become the proudest mama in the world (or dad!). And their smiles, laughter, hugs and kisses are so worth it. Now I hear "aww thanks mom, you're the best!" and it is the best thing I could hear. And it keeps me going each day, even when I am exhausted, stressed and worrying about how to pay for it all.

Autism does not come with a guidebook and we all do the best we can, each day. So, when you see another mom who looks like she's got it "all figured out", she probably doesn't. And if you are talking about me, now you know I certainly don't. But what can I do? Fall apart and be paralyzed by fear, doubt, naysayers? Absolutely not. That will not help my son at all. So, I slap a smile on and keep moving baby. But I think we need to be honest about these feelings, otherwise we do feel isolated and alone. We need to know there are others out there with the same fears, doubts, frustrations, anger, etc. I hated when new moms only talked about how rosey and wonderful life was! Can't we be honest for just a second? And that does not mean I want to dwell on the negative because I don't. But, I think people need to feel like they are not alone. I am here to help as many people along the way as I can. Anytime you need to talk, I am here. Contact me offline for a lunch date or whatever. We are all in this together, never forget that!


Shari Goodman said...

well said and oh so true. Thank goodness for support groups. Thank goodness for progress.

Anonymous said...

Thank you so much for this is how I have felt and how I still feel at times put into words so well.

Can I ask if you feel like some of your friends have pulled away at all? I sometimes feel like some of my friends have...I think that I haven't been able to do the things that I used to do because as you mentioned sometimes it is just easier not to...this is a rough and rewarding journey as a parent and it does change you somewhat...anyway...just wondering if you have ever felt this way at all? Thank you!

Terri Burges Hirning said...

Thanks Shari. I am so greatful for our friendship!

Anon - First off, thanks for your wonderful comments. Secondly, I am a person with a few really close friends, most I have been friends with for at least 2 decades by now. None of them pulled back, some more casual friends yes, but no true friends, sometimes the relationships changed, many times they did. What I ran into was that they didn't quite understand my life and some of the things we avoided - but were ok avoiding. Some of them thought it was a cop out, like we were hiding from the world. And of course some family members probably didn't like our "discipline" or what may be considered lack thereof at times. But when you have a child with Autism, all your preconcieved notions of parenting, rules, etc. have to be thrown out and completely redone! Otherwise just bang your head against the nearest wall because that is all you will be accomplishing, some people have a hard time seeing that. We avoided eating out for a LONG time and a friend actually confronted me on it. But, for us it was a no brainer. We shouldn't be eating out much anyways for health reasons, my son is on a very restricted diet, the sensory environments can be very overwhelming. How many times do I have to wait in the car with a screaming child to say "you know what....let's give this a rest". But you know what, now that is his weekly treat for getting his stickers in school all week. He can sit and eat in a restaurant no problem, it just took time. Timelines have to be adjusted, along with expectations. I think it is hard for many people, they want to help and be there but they just don't know how to. We have family the same way. They hang back (which can seem aloof) because they don't know what to do and don't want to make things worse, not out of malice. I hope that helps!

Anonymous said...

Thank you SO much!! You have no idea how much your words mean to me...finally I feel validated. I have felt so much of what you describe. I just wish those around me could understand that my life is different than it used to be...but that I don't care about them any differently...I just can't do all of the same things that I was able to do before.

I am so sorry for all of the questions...I do have one more if you don't mind. I noticed the link to "Enzyme Stuff" on your side bar and I love that site. We are using enzymes and I feel that we are noticing some positive changes. I am wondering if your son takes enzymes and what you have noticed if he does. Thank you for all that you are a wonderful mother!