Did I just tell you my child has ASD?
Here is a great article on what to do now.
As my friend (new or old)…
Please:
- listen
- ask thoughtful, considerate questions if you really want to have this conversation with me
- consider finding a way to help if you really want to get involved (see article/link above)
Do not: freak you out internally, attempt to fix me or rather give me advice.
I can’t stress this enough. I told you for a reason. Maybe it’s because I am just getting to know you and I just didn’t know how to avoid it because of your questions. Maybe I told you so I could share with you my life, so we could actually have a friendship.
The one piece that has been really hard is that when I tell people; they mostly pepper me with advice. People don’t always tell you things to fix them. I am not broken. It’s not time to suggest a support group, therapy, or friends with kids with ASD.
That’s what’s wrong with advice. Even if you ask me (rather than tell me) if I am doing this things, there is something about that that is ultimately condescending. Get to know me. Make it natural. Resist the urge to fix. Change the topic to something lighter if this topic makes you uncomfortable. I am more than being a mom. We can talk about something else.
Remember: A friend should be able to just talk, but more importantly, it’s not like I am bringing this to your attn because you are a counselor. It’s just my life. I can’t sit and talk about babies/toddlers for hours with you without ASD being woven into the entire fabric of the conversation. I have actually talked to people who act like I can just remove this from the conversation. THAT IS INSANE. As much as it makes you uncomfortable, force yourself to just listen, be nice, be quiet if you don’t know what else to do. I had someone tell me that I didn’t have to tell her “all of this”. “All of this” is all there is. I can’t become a different mom or have a different son. I don’t have any other children. It’s like asking me to discuss being a police officer, but I am teacher. This is the career I chose. I had a baby and this is our story. I should never have to apologize for that. And yes, I have been made to feel that I am supposed to hide myself because I never know who might not be able to handle it. Enough uncomfortable conversations like this will keep families from leaving the house. And that’s the last thing anyone needs.
You need to know that your friend is dunked in the advice bucket all day. No literally. The first 2 years, we would go to OT, SLP, and PT appts with the school and then turn around and do it privately. On our down time, I didn’t need to hear a non-professional’s advice on the parenting disability topic. Sometimes I just needed to talk, vent and all I got in return was more advice. The problem is, I wasn’t listening. I was just hurting. That was lost I nearly…everyone.
Did your friend just find out her child has ASD?
You are possibly on shaking ground. Here’s my truth. For me, during that first year – you were in or you were out. My thinking became very black and white for my own sanity. My life was full of confusion and questions. Expect your friendship to change as your friend works out her child’s therapy schedule, personal career, and emotions. Frame this situation as mourning a death. I have never read anything better than this. It’s a horrible comparison, I know. Most people were unable to treat me in this respect, which meant that people typically offended the shit out of me. I left nearly every social situation in tears, disappointment, and hurt. Don’t assume this person has people to talk to, that they want to run off to a support group. They wanted you. That’s why they were talking to YOU. Can you be the kind of friend that is there as long as they need you to be?
My child was late on all of his milestones. Don’t reduce him to comparing him to your dog or cat. Fucking offensive as hell. Period. Don’t reduce people’s children to pets. It will never be the same. I don’t care how much you love Spot.
My “I couldn’t give a shit button” is activated often. I have to decide who is going to support me or not in this life. If that leaves me deciding we can’t be friends. Oh well. I can’t deal with more drama. I am not in high school. If you are on the other side of the story. Make your decision too. Maybe you can’t be a great friend to this person right now. That’s ok too. The first year, for me, was about being offended because I was hurting so deeply as I explored every avenue of my fears. I am now trying to repair these relationships. All of them.
The people I decided were “out” were not always people I could push away. But, I tried because I felt they were so insensitive that I couldn’t handle it. Skin gets thicker, time goes on, and sometimes things aren’t as bad as they first appear.
Which brings us to – Your friend might come around when her life settles down. Let her repair the damage. Try not to hold on if she came off as something you didn’t think was right at the time. As much as I felt very unloved the first year of dealing with “diagnosis”, I am smart enough to know my family and friends were not trying to be the way I perceived them. I still feel today I saw some true colors that were hard to swallow, but if I push the world away; I don’t know what kind of life I will have. I realize now that as uncomfortable as I was with my feelings, so were the people I was trying to connect with too.
Don’t say “RETARDED”. (Are you kidding me?!!!!?) If we are friends, then you are at least 27 years old or older. Drop the word “retarded” from your lexicon and have a deep conversation with yourself how you have gotten to this age and continue to use one of the more offensive terms. Have this conversation with yourself and ask yourself how insecure you are with your own stupidity that you can just throw around that term so often that you say it front of a mother with a child with severe learning disabilities?
Have I said “retarded” – yes. And honestly, much more than I wish it would have ever come out of my mouth. I used to say things and people were “gay” too, but I don’t have to have a slew of homosexual friends to know that using the word “gay” makes me sound as smart as a rock. I can’t count how many people have said “retarded” to me 2 seconds after discussing my child’s challenges. I take a deep breath and let it flow over me.
You should know that 80% of people with ASD classify as mentally retarded (this term is only acceptable as classification used by psychologists). You should also know that saying learning disabled or developmental delayed is a nicer way of describing low IQ.
While saying “retarded” is just a word. If you are my friend, then you are probably not someone that does not consider yourself a racist or a bigot. People can’t chose their IQ, any more than they can chose their skin color. Please stop saying “retarded” – well, at least in front of me.
Here is a list of other disability-related words you negative connotations.
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Please comment if you think of more items you wish you could tell your friends and family. I am happy to keep this a working document.
I am not sure I wrote this in the way I exactly intended. I’ll push “publish” now, but something tells me it came out wrong.
The future is bright for both of us!