Boy, when you hear this diagnosis and then wrap your head around it, and then suck it up and grow a pair and share it with others...you really find out who your friends are.
I am part of a couple of groups of moms. I guess I love being a part of due date groups! One I have been a member of for over 13 years. The other group, 3 years. I am also a part of another group, and have known those women for a little over a year. I didn't tell that final group about Buzzy's diagnosis. They are more for talking about the baby. So, I didn't really see the need to share.
Oh, I wanted to talk about it. I guess talking about it for me is how I work things out. But, I didn't say anything. The first group kind of gets a pass. I did share the news with them and noted a few of them didn't comment, but while it stung a bit, I could see it. Many of those ladies are in a different stage in life. As far as I know, all of them are done having babies and very few of them have special needs kids. So, I could understand not having anything to say. Whose to say I wouldn't have been the same way?
But, the due date group for Buzzy...I definitely noticed that who commented and who didn't. And maybe that's stupid or petty of me, but I did. And it hurt. If something serious (life-changing) happened to one of their kids - the very children the whole group was created for, I would say something to them. Anything. Not ignore it. So, when it was all said and done, I went and cleaned house on my Facebook. I will admit I was angry when I did it. But, I wouldn't change it. I deleted people that couldn't have bothered to comment on my post.
I also deleted people that didn't really interact with me on FB. That's the whole reason I am on it: to interact with people. I have a lot of friends, but many of them are former students. I won't ever delete them (they get an automatic pass), because I enjoy keeping up with them. They didn't need to say anything, because they're still kids as far as I'm concerned. But, the people I thought were my friends (even if I never met them)...
I used to feel like I didn't fit in with Buzzy's due date group. Now I really feel that way. And it won't change unless Buzzy changes drastically. Which kind of sucks, because I like most of the ladies and their kids and like to hear about (most) things going on with them.
Yet, while I feel some people suck, some really amazing people have stepped forward. A few to commiserate and tell me about their path, a few to offer sympathy (but not in a smarmy way), and one who has given so much of her time to tell me about her son's journey with autism and to offer advice, help, a shoulder to lean on, and even her phone number to call any time. When I sent her a message about Buzzy's autism her first words were to ask how I was doing. She knew. Stacy had been there.
And while there are times I wonder what the hell I was thinking when I went and had another baby lickety-split after I had Buzzy, I stop and think if I hadn't I would not have met Stacy and I wouldn't be where I am now without her advice. (She happens to be a member of that final due date group.)
And I wouldn't trade her for anything.
Hugs mama.
ReplyDeleteHugs from me as well and a kiss for Buzzy. (babysoap)
ReplyDeleteYou are doing great things for your little guy! A mutual friend referred me to your blog. I hope you don't mind my commenting.
ReplyDeleteI'm a few years ahead of you, but I can relate to many of your experiences. Waiting for services. Yes. Missing some signs. Yes. Good therapists. Not so good therapists. Yes and yes. I say that not to demean your own journey. But so you know that there is hope even when things don't happen how or as quickly as you want.
My son is almost 10 now, and he was doing many of the same things Buzzy is. His diagnosis didn't come until 3 1/2. He is doing so well now. Does he pass for NT? Not quite, but you have to have a conversation with him for a bit to clue into the autism. He participates in our world. He relates some. He still gets confused by the social world at times. I do a lot of interpretation for him, but he learns. He smiles. He laughs. He tells jokes. He shows concern. He's compassionate. He understands rules and safety appropriate for an almost 10 year old. Yeah, we had a safety strap on the oven too. And he's achieving in school on par with his peers. For the most part, he's a happy kid, explores his gifted areas and gives/receives love freely with his family. I'm thrilled.
Buzzy can have this too--or exceed it! New research info plus early interventions (of many sorts) plus committed parents equal a bright future! Don't believe anyone who tries to limit Buzzy's future. It's only limited when you stop believing and pursuing. But that said, please be more wise than me. Remember to pace yourself, rest, celebrate small accomplishments (and big ones!), attend to yourself and your whole family--especially your marriage. It's a marathon not a sprint (absolutely true, but I hated that). You can implement a change at 9 years old that can make a huge change. It doesn't all have to be done now, and can't.
And finally, diet and supplements ARE critical to his improvement. Behavioral interventions get a turbo boost with diet. You are on the right track!!! Keep loving, engaging, standing up for your kid even when people don't "get" him or you, and direct your pain and energy toward helping him not changing other people. It can be a great process of growth as a mom. I, for one, would not want to go back to who I was.
Best wishes. Good thoughts, and lots of encouragement to you today!! May the blessings (even the small ones) feel bigger than the challenges! Never give up hoping!
I'm so sad that you feel like you don't fit in our group. I understand why, but it's not how I want it to be. Buzzy is "one of ours" for me and his diagnosis didn't change that. This process is about you and him and your family, and what you need. But I've been hoping, hoping, and hoping that some day you would feel like you (and he) belong, with the good and the difficult that you go through. Julymoms is a form of family for me at this point and you guys are a part of it.
ReplyDeleteThank you, Bethany, Lisa, and Amy.
ReplyDeleteHeather - I do believe I have your email. Thank you for words. I really appreciate it. I will definitely drop you an email some time tonight. :)