Where Advocacy, Special Needs Parenting, & Life Collide
One Dad’s point of view – A Rant for Special Needs “Parents”
The Dad’s Side of Cafe Life, and Another Reason Special Needs “Parents” Rule
Note from Katrina: This is the first of, I hope, many posts here at the Cafe by my other half, Jim. You’ve heard of him fleetingly here and there in other posts at the Cafe, but never directly.
You’ll learn more about Jim if you come back often to visit in on the Dad’s Side of Cafe Life, and I’m pretty sure you’ll be surprised. There’s a reason I fell in love with this guy, after all. He’s a deep and sensitive kind of guy, just a bit quirky, and chock full of the same awesomeness all my kids claim as well.
Dads are Part of “Special Needs Parents” Too
I’m a stay at home dad of three boys. All who have varying degrees of health issues. I myself have quite a number of health issues as well. This is a post from my point of view.
Being a guy who has Aspergers and reads almost everything literally I am bothered by some things. I don’t know why exactly but reading certain things, seeing certain things, and disruptions in my routines are my biggest issues. But the main thing this post is about is the lack of acknowledgement fathers receive in their kids’ lives.
I’ve complained to Katrina probably hundreds of times about seeing posts that just say special needs moms or entire websites, conferences (Blogher), dedicated to moms. Heck I get angry when something comes home from the boys school that only has my wife’s name on it. Katrina will say I read too much into it but this is something that has bothered me since I first became aware of it.
I know there are a few dads out there that write blogs and are advocates for their children. I’m so glad they are out there. I respect what they do so much. Seeing what they write and what they go through really helps out in times when it gets hard.
A Look from the Other Side of the Family, Dads are Parents Too
Just look at something from my point of view for a second.
I am a dad with kids, who combined have mild Cerebral Palsy, Apraxia, mild to severe Autism, Epilepsy with some Grand Mal seizures, and who are developmentally behind. I am a guy that is socially awkward. I have Aspergers that wasn’t diagnosed until my first child was 4 years old. I won’t ask questions unless I know you and trust you. So I go online to research (which I do A LOT). All I see are pages after pages after pages dedicated to moms with kids that may have some of the same problems mine do.
First off I get discouraged because I see a lack of support. Second I would find it extremely difficult to ask questions due to my social issues. Third and finally, I wouldn’t know who or where to turn to because I’d be lost. Where could I go? I really do feel lost at times because I see all the support moms get.
The point of all this ranting is just to say when you think about the kids with special needs just remember there are weirdo’s out there like me that would love to see replies, blogs, websites, and conferences that say Special Needs Parents.
Katrina Moody
Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
@KatrinaMoody
Wife; Mom to 3 guys w/ARS, autism, epilepsy & awesomeness; Advocate. Writer, Graphic Designer, Wordpress addict, social media nut. Site: http://katsmedia.com &
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wonderful post. you aren’t the only socially awkward parent in the world.
bryan
Thank you. I know I’m not the only one but It feels like it sometimes lol.
You are right! There are not enough support outlets for the dad’s. I look forward to more of your posts.
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Thanks! I hope to add more soon.
Yay!! This is fabulous!!
You will have to pop over to my blog sometime… where you might read about Craig, the wonderful Aspie father of our son with autism. He too is a stay at home dad and he is also the “Home Facilitator” for our guy’s distance education school.
I look forward to reading more from you Jim. Thank you for sharing your perspective!
Leah
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Thank you. I will look take a look at your blog. Nice to know I’m not the only one out there.
Hey there Leah! {hugs} Love your blog, and glad to see Jim beat me to replying to you, but just had to say hey!
Hi Jim,
Thank you so much for writing this post. Your experiences are truly inspiring. I do feel the same way at times. That we are neglected as dads as so much emphasis is placed on moms. I like your tone and presentation of this piece. Please keep writing.
Kind regards,
Qarau
Thanks. I do feel neglected at times when trying to find support for dads. Glad to know I’m not the only one.
Dads like you have a special place in my heart. It makes me so happy to hear about your involvement in your kids’ lives. I agree: Dads are TOO important to be left out of the equation.
I have a son with Autism. I’m also a writer. Last year, I wrote a short story about a Dad trying to figure out how to connect with is daughter on the spectrum. I wrote about the Dad instead of the Mom because I really wanted to draw attention to the fact that dads are so, so important in their kids’ lives.
I hope you enjoy it: http://wakeofechoes.blogspot.com/2012/04/ten-words.html
Oops! I linked to my latest post. The story is RESCUING GRACE and can be found here: http://wakeofechoes.blogspot.com/2011/02/rescuing-grace.html
Jennifer Froelich ( recently posted..Ten Words
I enjoyed the last one too, though
Great response for my guy’s post, Jennifer! We really appreciate your comments and sentiment. Going to read this post now, and I know Jim will check it out when he’s online later tonight!
Thank you for the reply and for posting the link. I’ll be sure to take a look at it.
You are so right, it should be parents not just moms. Do you think it is because there are so many single parent families or the fact that women tend to verbalize more and thus seek support more readily?
I enjoyed reading your thoughts.
I think that probably has a lot to do with it. I don’t know many families personally that are single parent with special needs kids but there are a lot of vocal moms out there. Harder for us dads I think.
I also realized I was on the autism spectrum when my son was diagnosed with autism. All the things parents were told to do to “help” their “autistic” kids were things I couldn’t do myself: get involved in group sports, understand a great deal of nonverbal social cues, begin to comprehend what the point of gossip is.
I have stuttered all my life and stuttering is on the autism spectrum, I recently found out, so even if my son’s diagnosis didn’t give me some conceptual basis in which to define why I never “got” so much of what goes on in the social universe, I found out I was part of the autism spectrum, invented, and constantly tweaked, by “neurotypicals,” anyway, meaning, who cares?
I’m also offended by the “Mom” thing. Yes, I am a mother, and not a father, but the mothers they are addressing are way too enthusiastic about “curing” something which I consider an integral part of my son’s being, not to mention my own.
The fact that you are sensitive to this, might mean you are not as autistic as you might think you are. It sounds like you want to belong to a group I’d never want to be a member of. But, then again, I might be paraphrasing the Groucho Marx quote of not wanting to belong to any club which would accept me as a member.
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Thanks for your comment. I am not sensitive about it as much as I get angered about it. I’ve had to adjust so much in my life to what I didn’t know I had going on, (Aspergers, mild CP, etc.). Been told it was all in my mind, or was ignored. I think I just hate being ignored more than I would being apart of a group. Katrina can tell you I don’t work well with others.
Ok. You are a stay at home dad. Unusual, but not unheard of. Gosh, just kind of seems like as a man you might not be caring much for not being recognized much for what you are doing. Women are never recognized in society for staying at home with their children, disabled or not. All I can say is, welcome aboard the women’s boat LOL.
Thank you for your post. I’m not a woman. Forced to be a stay at home dad due to brittle t1 Diabetes, seizures from too much stress, Complex Regional Pain Syndrome, Rieger Syndrome, mild Cerebral Palsy, and having heart issues from my mild heart attack 8 years ago causing me to be a little depressed. Not gonna mention the boys due to it being covered in other posts Katrina has made. I try and have a warm place in my heart (hard to do being an Aspie) to all parents with special needs children. I know how hard it is and I see more sites, blogs, get-togethers for moms than I do dads. That was the reason for this post. Once again thanks and have an awesome day!
I completely agree and it is really great to hear your side of the story. As I have got older I have realized that life really isn’t very straightforward like you think it is when you are a kid. I have OCD myself and sometimes feel a bit overwhelmed. Hearing about other people’s lives helps to put things into content. Thanks for sharing
Thanks. It is so helpful when you see comments from others that know what it’s like. Make you feel like you’re not alone.