I am what you would call wide open. If I am in pain I don’t ignore it, I EMBRACE the pain… and talk about the pain to anyone who will listen. I think that it is important to explore our feelings in order to grow and learn from our life experiences, painful or not. I also hope that by sharing my experiences they may be a help to others. I HATE those taboo subjects that no one is supposed to bring up. We have WAY too many of those in my family and I find it exceedingly dysfunctional. I think that we give those painful & awkward things even greater power over us by keeping them hidden. Yes, I know that everyone processes emotions differently, I get that. I just have a hard time when someone brings up a touchy subject and is greeted with an uncomfortable SILENCE. *cricket*cricket*
I have encountered a LOT of this lately when I bring up the subject of my youngest son’s Autism Diagnosis. This has been a life changing event and it has greatly impacted the life of my family– in ways both good and bad, I’ll be honest. So I tell people. I am NOT ashamed. I want them to know about our life so that I can help raise awareness and increase sensitivity. I want them to know WHY I may not attend certain social functions or keep cancelling plans. I want them to know WHY my son (or other children with special needs) acts the way he does so people don’t feel the need to secretly gawk. I want them to know that when they see a child having a meltdown in a grocery store it would be more useful for them to offer to hold open a door, not whisper about “out of control brats & poor parenting”. I want to help reduce prejudice & fight a lot of misinformation out there. And also I just flat out like to talk… and this journey has give me a LOT to talk about!
So Autism is obviously one of my major topics of conversation. (By the way, it is a REAL mood killer at parties!) When I first joined Facebook waaaay back when I reconnected with a LOT of people from my High School. In the process of “catching up” I told many of them about our journey. I said something to the effect of, “I am currently staying at home with my 2 boys ages 2.5 and 4 (only 17 months apart!!), one of whom has an Autism Spectrum Disorder. It has changed our lives… and also opened some new doors for me. I am becoming active in disability advocacy and special needs ministry. I facilitate a support group for parents at my church (as a a layperson, but it is good to get to use my seminary training somehow!) and it has been an amazing experience. I am also helping the church start a special needs ministry for the kids and I hope to work in a related area once the kids are older. ”
So I put myself out there, took the time to tell people what is going on with me, and I also took the time to ask about what is going on with them, too! And you know what I got all too often? SILENCE.
Sometimes people may respond in general terms, but then ignore the Autism subject. I am very fully aware that in some cases this is related to the superficial nature of Facebook (THAT could be a whole long post in itself). You are connected to people, but not REALLY connected. Some people don’t really wish to take the time to have a deep “catching up” conversation. Most people want to stick to the “fluff”. But this awkward silence happens in person, too. That’s when it REALLY gets me.
One of my recently regained friends on FB noticed I was in some Advocacy groups and she approached me about the subject. I was delighted and thanked her for asking about it, but it got me going. I told her, “Yes, my youngest has a form of Autism. I get sad when I tell people about it and they get uncomfortable– changing the subject or just ignoring it all together. It has happened to me several times recently and I finally got cranky about it. I like to talk about it to help raise awareness. If it doesn’t bother me and I seem open to discussion, why should it bother them? I would rather someone say to me “Wow, I don’t know what to say” and be honest that they don’t know how to discuss it – instead of just ignoring it.”
I HATE it when people say NOTHING. That nothing SCREAMS at me. Even though there could be any NUMBER of explanations for it, my imagination runs away with me. I wonder what they are thinking. Are they Michael Savage types? (Autism is NOT a hoax!) Do they pity me? (I prefer empathy). Do they think my son is broken? (He’s NOT. I am SO PROUD of him!) Are they not seeing my beautiful, smart, loving, energetic child for the Label? Do they just not care? If they took the time to talk to me and I took the time to tell them about this part of my life, the least they can do is take the time to say something. Make something up, for heaven’s sake. It’s only polite. Just don’t IGNORE it. My son is not to be ignored! And by the way, I am not a Narcissist (much). I don’t expect everyone to drop everything and spend all their time listening to me tell my life story. I really do want to know about YOU. It’s not all about me. But is it too much to ask for it to be a LITTLE bit about me?
I do confess that I am at times touchy. It bothers me if people act like my life is soooooo hard. It also bothers me if they don’t understand how hard my life is. When people say, “Wow, I would never know by looking at him”, I get mixed emotions~ glad that my son is doing so well, but wondering if people are second-guessing his diagnosis and thinking I am over-reacting and there isn’t really a problem. I have also had people use the “It could be worse” tactic, just so I could “put things into perspective”, and then tell me about parents who have children who are dying of cancer. Well, that’s just insensitive and not fair. As truly awful and heartbreaking as those stories are, I feel that it downplays the struggles that I also face EVERY SINGLE DAY. File all those under things NOT to say to an Autism parent.
So yeah, I guess Autism and special needs are hard subjects to talk about. I complain that people don’t say anything, but then I also complain when they say the wrong thing. In my defense, I can tell when people say things in a genuine desire to be supportive. Even if those people don’t know just what to say I don’t take offense, because I can tell where their heart lies. Anyway, I am going to try and be less touchy from now on. To prove it, I offer up some possible responses that I promise will not offend me (I can’t speak for others). This is especially for you silent types:
Your child is beautiful/sweet/precious/funny/wonderful/strong…
You’re doing a great job!
Sounds like you have had quite a journey.
What a loving, supportive family you have.
I am not very familiar with Autism. Could you tell me more about it?
How great that you have found a group of people for support & encouragement.
I am excited that you are so involved in Advocacy.
Is there anything I can do to help? ~(my personal favorite!)
To my fellow Special Needs Mommies~ feel free to add to the list!
NOTE: This is a repost. The original appeared at my old blog “My Playpus Life”