I promised an explanation on why I haven’t really been on the internet, so here it is.
My son, Ari, was diagnosed with severe autism back in November. I went through a pretty dark time for a while starting even before the diagnosis because I knew something was “wrong” with him. I kept telling myself and family that asked questions that he was just a late talker and I hadn’t socialized him well, so that would explain some of his behaviors. Denial is a weird thing. But in the late summer, other behaviors started that couldn’t be ignored, such as running around in circles until he couldn’t breathe anymore, not making eye contact, flapping his hands, etc. Alex and I bought some books on autism and started doing research on our own, and all signs were pointing to a classic case, but not too severe. We found the Riley Center here in Huntsville, and went there for a two part evaluation. They assured us that as parents, we were some of the best they’d seen, and none of this was our fault, but he did have some symptoms that needed to be addressed. After finishing the medical part of the examination, we got the results back. The Center had rated him as severe, which was WAY worse than we expected. I mean, he’s so sweet, and likes people, doesn’t freak out too much with new places, and is so clever! But it turns out he’s just a little different from your classic case of autism, as in he’s overly passive.
Getting news like that just shatters your soul. While you’re telling everyone “We got him in therapy early, so there’s a great chance that he’ll be totally normal before he’s five,” deep down, you’re thinking about the percentage of children that never recover and just regress further and further into their own minds, never to come out and live a full life. You feel like a failure, despite the doctors telling you you aren’t. You can’t stop thinking about all those other children you’ve seen that are past the point of no return, and wonder “will that be my baby one day? Will my handsome little boy act like a shell of a human being when he grows up?” So life is scary right now. It was even scarier when we didn’t know how to pay for the therapy. (FYI, insurance doesn’t cover much, and we were left with $24,000 a year to pay on our own) But now, our families have banded together and I think we’ll pull through that part just fine. It’s nice to have so many people care for one little baby. We are truly, TRULY lucky on that part.
So now, every day, I take Ari to the Riley Center, where he’s undergoing intensive ABA therapy. He also has a speech therapist and occupational therapist that come to our house once a week. Every day life is no longer “easy” (like it ever is with a toddler). Simple tasks, such as eating lunch, giving him juice, and playing with toys, have become training exercises. It’s exhausting. I miss just innocently playing with him, thinking some of his behaviors like spinning in circles were “cute,” and just giving him juice when he wants it, rather than it being a huge power struggle. I feel lost not knowing when we’re pushing too hard, or not enough. If we push harder, will he regress even more because he’s so frustrated? Or if we don’t push hard enough, will he ever progress like he needs to? Not knowing exactly what to do is the worst. But we’re doing our best and hoping we’ve made the right choice with the Center.
So you can see why my crafting has taken a back seat. At the end of the day, I just want to be with Alex and turn my brain off. The only thing I’ve made recently was a cozy for my Garmin. I hope to get back in the seat soon now that craft night will be picking back up and I’m feeling more stable emotionally. I did join a gym which has been WONDERFUL. I previously hated working out, but when you have as mush stress as I do, running on a treadmill until you can’t think straight is delightful! Who knew? Maybe this year I’ll actually loose all that weight that I’ve been telling myself to loose for the last 5 years!
This is the mental state I’m constantly in: Stay optimistic and do the best you can do, and don’t let anyone see your tears. It will all work out in the end, and even if Ari doesn’t recover, he will always be my sweet baby boy.
on Jan 11th, 2010 at 12:19 pm
*hug*
on Jan 11th, 2010 at 12:28 pm
Renee,
I know Atlanta’s a bit of a hike, but there’s a huge center called the Marcus Autism Center (http://www.marcus.org/) that may have info for you as well. I by no means claim to have a firm grasp on any autism spectrum disorders, but we talked about it a lot during one of my grad classes and got a glimpse at how stressful things can be and just know I’m thinking about you and Alex. If you ever need anything (and I’m serious!) just ask- I can be in Hunstville in 6 hours!
on Jan 11th, 2010 at 12:28 pm
It’s a tough thing you guys are going through. Be strong and call on friends and family when you need. We’re here for you.
on Jan 11th, 2010 at 12:36 pm
Wow - I wish I could give you a giant hug (and a stiff drink). I can’t imagine the emotions you’ve gone through, but if anyone can get through this, it’s you and Alex! My heart is with you guys - and no matter what happens, Ari is going to be a better person for having such wonderful parents!!
on Jan 11th, 2010 at 2:22 pm
Oof…well that’s no good. That makes me sad. But I know Ari has parents that can handle the amount of time and love it will take to get him to the place he needs to be
And I know we’re friends far away, but in some remote chance we can help, just let us know.
We’ll be thinking about you and sending positive thoughts. Stay strong.
on Jan 11th, 2010 at 2:55 pm
Like Brian said, please let us know if there is anything we can do for you, Alex, and Ari. You know that I’m a special ed teacher and I’ve done ABA therapy, so if you ever need to talk, let me know. Don’t neglect yourself in all of this; it won’t do anyone any good if mama is a hot mess.
So keep exercising and doing other things to relieve some of the stress and chaos around you. The early therapy will most likely make a huge difference. I have never worked with anyone who didn’t benefit from early intervention. Ari is lucky to have amazing parents.
on Jan 11th, 2010 at 3:13 pm
Agree with Jen completely. You’re in my prayers.
on Jan 11th, 2010 at 8:59 pm
Thank you for sharing your news. I’m sorry your family has to deal with this, but I’m glad to hear that your son is getting some therapy. It will all work out. My prayers are with you!
on Jan 11th, 2010 at 10:41 pm
I’m not sure what to say. I don’t know you, but I feel for you. I’m glad you are keeping a positive attitude during this trying time. I also like how you acknowledge your doubts too. I hope the best for you and your family.
on Jan 12th, 2010 at 10:25 am
My parent’s Priest related something that may help: Attitude = 100%. If you assign a number to each letter of the alphabet (a=1, b=2, c=3 etc) and add up the word attitude like an equasion, it equals 100. I know some days aren’t going to be 100, or even 50, but know that there are lots of people pulling for you. Let their spirit lift you up.
This is what we’re banking on as we get my husband through Chemo, and for us, today, in this very moment, it’s working. Live for the moment, and love the ones around you.
on Jan 12th, 2010 at 11:52 am
Maybe we haven’t said it enough, but Nick and I are TOTALLY COMPLETELY 200% there for you guys. It broke our hearts to find out about this, and we both felt it keenly. I hate that we’re so far away, and that we can’t really do as much as we would like, but you guys are always in our thoughts and prayers. We love you and your family, and we need to be reminded to tell you that more often.
on Jan 12th, 2010 at 12:30 pm
I’m glad you’re doing things and exercising to relieve the stress. I’m also glad that I know somehow how much you love him and how supportive you are with him. Writing how you feel is wonderful, and though it may not seem like it helps, it does. Maybe keep a private journal for yourself, if you don’t already. Being scared is perfectly normal, but you love him. Your entire family loves him. I’ll keep your family in my thoughts.
on Jan 12th, 2010 at 1:39 pm
You are an amazing mom! I’m sorry about your little guy but you didn’t stay in denial forever and that’s pretty damn awesome. You got him some help even though it means a crapload of work on your part. A lot of people these days wouldn’t even do that, so way to be awesome.
Also, (at the risk of sounding like an echo) there are a bunch of people here in Ohio ready to do anything they can to help. Feel free to lean on any and all of us.
on Jan 12th, 2010 at 4:27 pm
Aw, man, what a rough time while you adjust to this new (and challenging!) phase of your lives. I send you the best luck and the best good thoughts. Your son is lucky to have you, and I feel like you’re doing a spectacular job at helping him thrive. B
on Jan 13th, 2010 at 12:05 pm
Sending hugs…
and do let me know if there’s anything I can do
Nancy
on Jan 16th, 2010 at 8:49 am
Autism is a scary thing, but you can pull through! I know people that have children with autism, and also people that work with them everyday through the Autism Society here in Canada. It is scary at first, and you will always worry, but things will turn out alright. There are some amazing people and groups out there to help you with the scary parts, and the therapy processes are always getting better, and the younger the child the more the therapy will help him.
Hugs and warm thoughts!
on Jan 17th, 2010 at 4:17 pm
Renee,
I think the fact that you are so worried all the time is what tells me that you are going to do the best you can do with Ari. I’m sure it will take a toll on you, but I think you’re going to do what’s right for him and that makes you a truly amazing person. I hope you realize that about yourself.
I was watching a recent AMAZING short series on PBS called “This Emotional Life” (it’s online at the PBS website) and there were parents dealing with a child with attachment disorder. One of the things the father said was heartbreaking, but it reminded me of what you’re going through. He said
“This was not the dad I wanted to be. And that… that was the hard part with Alex. Is recognizing that I have to be somebody else who is best for him. And that’s a hard thing to give up. But maybe that’s what being a dad is.”
For your sake, I hope you can find other parents who are going through the same thing as you (if not locally maybe on internet forums?). Your friends love you, but I doubt we’ll ever be able to relate the same way someone else with the same experiences can. Maybe it would help to hear from others that they’re going through all the same things.
All our love and support,
Katie and Ryan
on Jan 17th, 2010 at 4:22 pm
And if you need a chuckle, look at your tags. Since they’re about the same frequency on your tags, it totally looks like you have a category called “baby baking”
on Jan 31st, 2010 at 4:49 pm
Hey so I haven’t been around alot but I just read this and now I’m sending you internet hugs. If you need anything from that weird balloon chick in Vegas, lemme know. keriboyle (at) yahoo is my new address. You’re awesome! Don’t forget that!
on Feb 2nd, 2010 at 6:38 pm
Wow, I don’t really know a lot about autism, but how you’re supporting your son is so wonderful. I’ll keep you in my prayers.