Go Ask Aunt Becky. Again.
For the first time ever, I have had to rewrite a post, and not because I overused the word ‘fuck’ or got sued by someone (yet). In the original post, I made an unhelpful comment that started a comment thread that was unhelpful to the asker. The comment thread is important, so I left it on the post below, but I want this post to focus on the question and this Prankster.
It’s also very clear to me that we ASD people need a space to talk. I’m trying desperately to start something over at Band Back Together, so if you’re on the fence, please hop over.
The previous post is up for us to discuss our experiences with autism. This post is here to help, support and guide this Prankster.
Dear Aunt Becky,
Do you have any advice for mothers of children who have recently been diagnosed with autism? How did you figure out what was best for Ben? I feel so lost.
Oh Prankster, I’m so sorry for what happened in the last post. I tried to answer your question properly and give you some hope about your child’s condition. I wanted you to see that while you go through some of the really hard times, there are bright spots, too.
There is always hope. Special needs parenting does not always need to be as awful and overwhelming as it feels.
I’m afraid that the wealth of information of autism can sometimes overwhelm us. I did not have that when my son was born and in many ways, I am grateful. I was fortunate to have a child on the lighter end of the spectrum. I had a wonderful Early Intervention caseworker, we had some amazing therapies and putting him into a Montessori preschool full of physicists’ kids was the trick to help Ben.
Is he “cured?” Of course not. That’s not how it works. But I don’t regularly share the darker parts of autism and I didn’t figure that this would be the time to showcase it. Instead, I pointed out that my son was quirky and wonderful as he is. This is true. There are times when it has been dark and awful and hard. This is also true. As a newly diagnosed parent, you do not need to know the dark times, as your dragons will never be the same as mine.
What happened next was not what I wanted to have happen and for that I am deeply sorry. You wanted my help. I wanted to help you. I had hoped that my Pranksters could show you some resources that I did not know of to guide you in your journey. I’ve never used The Internet for autism resources. I’ve never connected with other autistic parents. I don’t have other special needs parents that I routinely talk to.
My son is older than most of the autistic parents I’ve seen online which makes it harder to connect with them.
I am trying to put together an autism resource page and get some of the autistic parents I’ve met to post over at Band Back Together so that we can form a community there. Perhaps there we can share our different perspectives and grow together. I think gathering in one place would be a good thing for all of us. I’ve never felt comfortable talking in great detail about my son here. I don’t know that I ever will. I’d be honored if you would come share with us over there.
Now, I am going to share some resources with you again.
Faces of Autism is a great resource for you.
US Asperger and Autism Association is another great source of information.
So, Pranksters, what would you tell a newly diagnosed parent?
And, if you’d like to talk about autism, I welcome in the post below, but now is the time to support this scared Prankster.
Nicely done, Becky.
Fellow Prankster, I have no advice to share, but instead let me offer my sincere hope that you find the help and resources you need. And not just for your child, but for YOU, as well. Remember, don’t feel ashamed to ask for that help when you need it.
My daughter doesn’t has a diagnosis yet but she does have some situations going on. I want to tell you that you will find joys in your child that most people take for granted. My middle daughter put three words together more than once yesterday. I cheered,clapped and cried in a classroom full of people that I didn’t know. I did not care one fucking bit what people thought. I can tell you that I don;t know when my oldest did that because I had taken my child talking for granted. You are not alone in this.
We are none of us alone. This is a great comment. Thanks, Mandi. xo
Nicely done, Aunt Becky. Also, The David Cook would agree.
I will be happy to help with Band Back Together’s autism resources info. I’ll start working on it right now.
My son was diagnosed this year with an autism spectrum disorder, so here is what I would say to your asker: First, start accessing services for your child. In the U.S., children age birth to 3 can access Early Intervention Services for free, in-home occupational, physical, and speech therapy services, if the child qualifies. Early Intervention Services are administrated on a state level but are federally required. You don’t need a referral or anything. Your pediatrician should have the phone number; otherwise, just Google “early intervention services in [your state]” to find the contact info.
If your child is age 3 or older, contact your nearest public elementary school. “Intermediate” or preschool services will be administrated through the school. My son is receiving full-day specialized preschool for free at our local elementary school. (This is in Texas; in PA, where we used to live, special needs services were usually outsourced to private special needs preschools and providers.)
To me, the thing that’s most difficult about the time of the initial diagnosis is the feeling of helplessness. Throwing myself into finding services for my son helped me feel like I had at least a smidgen of control over our situation.
Best wishes, The Asker. The David Cook wishes you well, also.
Thank you, love. The David Cook would be proud of you for helping me. I’d love a list of resources for Autism for Band Back Together. Thank you so much.
Nicely done indeed — kudos to you for going back!
This prankster doesn’t mention how old her little prankster is, but I just wanted to add that a diagnosis later in life (my son was originally diagnosed at 6 – 8 years ago when ASD was just starting to be recognized and resources were few) At 14, the available resources are few and far between. As is often the case, an early diagnosis is the best diagnosis.
My greatest piece of advise would be “CONSTANT VIGILANCE” (I love Mad Eye Moody). Generally, ASD kids are challenging because there isn’t a one-size fits all answer. What works today may or may not work tomorrow. You have to be willing to let yourself get it “right” 50% of the time without beating yourself up.
It will be frustrating to muddle through the muck, but you’ll find a place where you can identify triggers and have a handful of coping mechanisms in hand just in case the first (or second, or third) thing you try doesn’t work.
Hold your head high and don’t let the judgmental Judy’s and John’s get in the way of what you know. ASD kids can often look like spoiled brats and people are quick to judge your parenting (been there, done that). I’ve found addressing those people head on with information about ASD is the best route.
That should have read …
” … that a diagnosis later in life (my son was originally diagnosed at 6 – 8 years ago when ASD was just starting to be recognized and resources were few) brings on an entirely different set of challenges. At 14, the available resources for him are few and far between.”
I cannot presume to speak to the diagnoses all these Pranksters are dealing with, and the one you’ve recently gotten that must be unimaginable scary. But I do know this: you are your child’s best advocate, no matter who your child is. And in your particular case, you have a kid blessed with a parent smart and brave enough to say, “What the hell is going on? I need HELP, here, people!” loudly and publicly enough that you are GOING to get help. You already have, beginning with what’s right here.
The grand adventure of parenthood throws every one of us curve balls by the jillions. You field ’em, and you glory in your kid for each positive, with each tiny step. Coming your way from me: thoughts and prayers.
I don’t have experience with this as a parent, but as a former teacher I just want to say that you shouldn’t get too caught up in the diagnosis. Your child is still the same kid you’ve been parenting all this time, it’s just now you’re going to have more resources to help him/her.
We cannot define ourselves solely by a diagnosis.
I think that was a great response.
first of all…a diagnosis is your ticket to getting as much help as available. Most schools won’t give you crap without an medical diagnosis. this is what you can use to say, “hey! YOU HAVE TO HELP MY KID!!” and they do, it’s the law. So as devastating as hearing the words, your kid has autism…USE IT!!
Don’t be scared. Do not let Autism intimidate you or freak you out. YOU are stronger than it is. Also? there are HUNDREDS of moms like me and like Aunt Becky. We are here to help and support. Cry and laugh with and believe me, there is a lot of laughing. Our kids are amazing.
There are resources that you would not believe.
Don’t be shy. Friend me on Facebook, I have about 30 moms there and we also have a support board that is private. I’ll get you in. 😉 look for me: kerry ann butler
HUGS and please dry your tears and know that YOU are a warrior and can handle this. You can and will.
I’ve tried to respond to this a few times but still have a very hard time discussing my daughter’s diagnosis in any serious way. The one thing I would say is that you’re already doing one of the best things you can do by reaching out. I didn’t do that. I played like everything was normal. It took a year before I could really admit to anyone, other than her doctor, what was really going on. And that year was all wasted.
I’ve tried to respond to this a few times but still have a very hard time discussing my daughter’s diagnosis in any serious way. The one thing I would say is that you’re already doing one of the best things you can do by reaching out. I didn’t do that. I played like everything was normal. It took a year before I could really admit to anyone, other than her doctor, what was really going on. And that year was all wasted.
I never quite know what to say about it, either. It’s not that I can’t be serious, it’s just that I never know what to say. The asker is light years beyond where I was at this point in the diagnosis because, like you said, she’s reaching out.
Full of the win. Hope that she finds herself to Band Back Together. I’m assembling an autism community over there.
I have no personal experience with autism, although my children – like most children- had challenges of their own. And both my kids are pretty much grown up now, but I’ll say this in the event it provides any comfort – both of my kids had friends who were autistic. In the event your child is young and you are worried about the social side of things, please believe that there will be children who will bond with, care for and be friends with your special child. They can be really neat kids. So hang in there and be sure to ask for the help you need.
I have so much to say about this, but the hour is late, so I will be brief. First remember that your child is the exact same person they were the minute BEFORE you got the diagnosis. It is just words, a label. A label that should hopefully help you get someone else to pay for the resources your child will need to blossom and grow. And in some way, maybe the label can be a comfort to you, because it confirms things you’ve been suspecting for a while and gives you a flag to wave when someone is giving you & your child the fish-eye in the playground “see, my kid isn’t an ill-raised, ill-behaved brat, there is a REASON for this strangeness you see.”
It is also your entry card, your key to the vast community of Autism Mommies. For me, too, that wasn’t there when my now 8 year old son first got diagnosed. The groundswell was just beginning, now it’s a tidal wave. So look around, there are LOTS of communities out there. Take the time choose wisely, one that seems to fit your family, your child, your parenting style.
Trust your gut, unless your gut is leading you into despair, then harness every resource of your rational mind to talk you out of that shit.
And remember, what has worked for one parent, for one child is always an interesting story to hear, but may or may not work for yours. Look, listen, learn, experiment, throw all the spaghetti at the wall & see what sticks. As many before have said: if you’ve met one person with autism, then you’ve met one person with Autism. Never lose sight of your child’s uniqueness. They are YOUR one very special person with autism.
Kudos X 10 to you for reaching out! I have no personal experience of having a child with Autism, I have a 22 year old daughter with ADHD, it has its own challenges. However, I can say I work in an assisted living center, for challenged adults. Do not be afraid to reach out, ask questions, demand answers. Ask again. So many parents I see blame themselves for what the challenges that their child has had to face. Please, for the love, do NOT blame yourself. There is a wonderful community here, and at Band Back Together. These are people that can help you find resources, give you emotional support when you are feeling like you cannot go another step. I cannot pretend to know the inner turmoil that you are feeling, but here, you will not go through it alone. Ever.
Becky, we’d like to invite you to bring along your single-stranded reverse-transcribing RNA viruses and become one of our Authors in Alexandria. Invitations have been extended to you by email as well.
You may mirror your existing posts from here or elsewhere or produce original posts there, on anything you wish, as you desire. For your contributions and participation we will blogroll you with no reciprocation required. See our Guidelines for Authors for full details.
Come contribute your perspectives and opinions to the ongoing conversations there or, even better, start some new – and different – ones of your own. Contact us through the site or directly by return email for full invitations and instructions.
There is a museum in San Fransisco that has an exhibit where you sit in a chair and experience every day things the way someone with autism would. I was working with autistic children when I experienced this. I can tell you that from then on ANY time I felt even the slightest bit frustrated I remembered what they went through every….single…second.
And you’re not alone…anyone