Sorry for all the linking to others’ posts, but just came across this one too, and loved the message.
Unstrange Mind talks about Early Intervention and why it’s important…and it’s not what you probably think!
This one works for me…
Just read a post on “I Know This Rose Will Open” that gives a great metaphor for how autistic adults might feel if we do not treat them as the experts on autism.
Read the post here. Thanks, Ekie.
A voice…on a rollercoaster
I always feel like I have so much information to offer, but then I’m conflicted that it’s not the *right* information. I feel like I could be doing more to help support others, particularly parents, but I’m not sure what to do. I work in a job that supports programs that support families of young children, but they all do so very, very differently. Who am I to say what the world should do?????
Well, I’m a mom. I have (at least half) a brain. I have experience with autism. So, that’s my voice. I guess I just need to own that voice and never assume I know about anyone else’s experiences. As long as I stay there, I guess it will be OK.
I would like to say if you follow me, it would all work out just fine. But…life. Am I right? I think I was clear in my last post, but I’ll share this again. We didn’t know how this would all work out for my son. We still don’t, really. It just seems like we are in a better spot than we’ve ever been. And that thrills me! And that terrifies me!
I’ll let you in on a little secret of many parents with kids with differing needs, particularly the ones that make school and life really hard.
Life is like a roller coaster.
And in order not to feel the crash so hard next time, we are careful about how much we celebrate getting to the top of the hill we just climbed. Frequently, it’s not a smooth, fast ride down to help us climb up the next hill. It’s a rocky, dangerous cliff dive into very murky waters. Waters that might have sharks…and electric eels…and, well, you get the idea.
And so to climb back up the next hill, we need to find our way out of the murky water, dry off, and figure out where the heck that roller coaster was again, anyway. It might take some time. Gotta find that amusement park. Pay admission again. Troll through the crowds.
But then…there it is! The shiny, fast, thrilling ride!
We forget the cliff. That was last time. We want another shot at the top of the hill. And it’s for our baby, so, yeah.
We wait in line. We pay attention to all the safety information. We follow the directions of those in charge of the ride. We do all the things it takes to get up that hill.
And we’re 
off.
Click.
Click.
Click.
You climb. And climb. You see the light at the top of the hill.
Click. Click. Click.
You feel the rush…you’ve made it up another hill. It feels glorious! The thrill of getting to the top, looking back at all it took to get there. You feel great. Looking down, you see there is another hill ahead. But it’s OK. We’ve got all this momentum…we can do it!
Down, down, down.
Splash.
Somehow you end up belly flopping into the murky depths again. We see that shark fin before we even hear the splash. We wonder how, just how, did we get wet again? “But I waited! I listened! I followed the rules!” you say as you get out, dry off, and start all over.
If you’re like me, you don’t relish the top of the hill so much. You know you have to find the park, pay admission and find the coaster, but after riding a few times, the thrill is gone. You think “if I just find smaller hills, shorter rides, maybe that belly flop won’t sting as much.” The thrill isn’t as big, you reason, but the hurt won’t last as long.
And you’ll only go for the “big one” when you know, you just know, the thrill will be huge, and the next cliff dive might not happen right away.
I don’t want this to sound too depressing. I don’t want other parents to get stuck in that murky water, eaten by the shark, never to try for the big hill again. I just want you to know that I get it. The fall of the next downhill can be pretty life altering. Making decisions that go all wrong for your kid. Been there. Switching schools, having hope for positive experiences, having it all blow up in your face, switching back to old school(s) [plural for both kids…long story/another day], and things still not right for your kid. I felt like something was pulling me into the depths for sure.
But we climb out.
We shake our heads and dry off.
We figure out which way to go.
And what we find most times is that the park isn’t that far away. We find familiar faces as we stand in line. There are cheers coming from the rest of the coaster as you crest the next hill…cheers for your kid! And it softens the blow of the next cliff dive. The smack not so hard, the water not as murky.
And as we find our way back, we may even start to envision the day we don’t cliff dive. We may be able to make it up that next hill without going for a swim. We’re not sure when that day will come. But for our kids, we’ll wear floaties every. single. day if it means they are going to be OK.
So…back to my voice. At times, it’s been a little hoarse from the screaming. At other times, completely mute, as I was just treading water, trying to stay above long enough to breath. Right now, I think I’m finding it strong enough to throw out a few life preservers and help point people back down the road to that amusement park.
Not Enough Time. Lots of Time
I had one of the most interesting experiences this week. It’s effects were unintentional. It’s consequences radical. And it all started out harmlessly enough.
I presented at the National Autism Conference in State College, PA on August 5th. I was presenting with 3 other women, all 4 of us moms of children with disabilities, 3 of us with children on the autism spectrum. We spoke to a group of parents and professionals about Early Intervention, but in particular how to be an informed and effective parent. When planning the presentation, my colleague asked if I would be interested in having my son, Will, share some insights on growing up and we could incorporate them in whatever way worked.
So, I kept forgetting to ask him. Then, a few weeks before, I asked and he agreed. We decided on video. Dropped the thought again. A week before, I came up with some questions for him. He was OK with them. So now we are 4 days out. I asked him to commit to videotaping that night. I asked him if he wanted to have time to prepare, to come up with responses. He said no…”I’m OK with just talking to the camera”. Well, then…here we go!!
The following is the video. I did edit, but not for content, mostly to keep it under 5 minutes. I did not coach him, nor did I know what his answers were before the camera went on.
Amazing kid, huh? I know, right?!?! But parental pride aside, I got so much out of doing this. A few thoughts:
- At 17, my kid is more insightful about his childhood than I have yet to accomplish at 45
- Even if some of his topics were things I’ve talked about with him over time, his words and insights were all his own
- He is OK with who he is
- He knows that there are others who are OK with who he is…and it’s not just his parents/family
- We are all just looking for “our people”
- Doesn’t everyone need a fresh start once in a while?
As I’ve shared the video, here are some more thoughts:
- Parents of young kids need to feel some hope that there is a future for their kid
- Seeing a video like this gives them hope
- Maybe dialogue and insight from adult autistics would be even more hope?
- Showing this video to those who gave us hope in the early years of his educational journey is very gratifying…and makes people cry.
- I got lots of kudos as the parent.
- I don’t like getting credit for this.
- Because I was just being a parent.
- Being a parent means loving your kid unconditionally.
- Unconditional love means loving your kid right now, as they are, not as you want them to be.
- I wish all kids/people on the autism spectrum unconditional love.
So back to the title of this post: Not enough time. Lots of time.
One of my messages to the parents in the room was: there’s time. There’s time to learn. Time to grow up. Time to just be a kid.
We are life-long learners. It’s a concept I only embraced as an adult. I was good at school, but it was something to accomplish, then put aside. Be an adult, go to work and be successful. I never thought about all the learning I would need to do as an adult…learning how to be good at my job(s), how to be a wife and a mother. Learning how to take care of other people…and myself. Just reading about something interesting and fascinating…just because it’s interesting and fascinating! What a thought!!
I didn’t learn how to play volleyball as a kid. I only joined a team as an adult and play for fun. I didn’t starting running for exercise until I was 40. And I’m still learning that…oy! I didn’t even learn the job I am doing now until about 5 years ago, and I’m still learning as I go.
We put so much pressure on parents of very young children with autism to NOT WASTE TIME! Get as much therapy as you can. NOW! Otherwise…what? We are told we miss a window of opportunity. If they don’t do X by 5, they’ll never do Y and Z and P, D, Q.
As you watched my son’s video, you might think “well, he’s one of those gifted kids, that always did well”.
And you would be wrong.
He went from Catholic/private school, to public, to private, to public and back to private school. He never read on grade level on testing from the time he started school. He couldn’t sit still. He hated writing. His teachers struggled to understand him. He struggled with being in school, as well as all the social stuff. He was never invited to a birthday party. I could go on.
It wasn’t all unicorns and rainbows.
But he kept being himself. He kept learning. And he kept doing new things.
He started reading more when a middle school teacher turned him on to history.
He started writing better, in high school, when he wanted to communicate with others online about his interests.
He did better socially when he found shared interests.
He keeps being himself. He keeps learning. He keeps doing new things.
Join the cross country team, even though I don’t run…sure! (full disclosure: we pushed him to do that). Join the musical in 11th grade, after never dancing/singing in public…absolutely! Join marching band in 12th grade when the last musical instrument I played was violin in the 4th grade…why not!!
So, my friends, there’s lots of time. We are always learning. We continually set new goals to reach (like, theology professor!). But a lifetime might not be enough time to fully realize the potential of my baby boy.
Knowing More, Doing Better
One of the blogs I follow religiously…not kidding, I worship this woman…ok, sort of kidding…is Diary of A Mom by Jess Wilson. She is the parent of 2 beautiful girls, and one of them is on the autism spectrum. The best part of Jess’ journey is that she has learned and evolved. She does not strip her blog of her older posts, which don’t reflect where she is as a mom and autism advocate presently. But she refers back to them to show us all that when we know more, we do better.
When we look outside ourselves and our situation, we find different ways of looking at our situation or our world. Her biggest a-ha’s have come from listening to a growing number of friends who happen to be autistic adults. They are helping to educate Jess (and the world) about what it’s REALLY like to live with autism…not what it’s like to live with a child with autism. It’s good stuff, folks.
So, Jess’ blog and parent support. One of her posts (actually many of them) speaks to this issue of how parents respond to the autism diagnosis for their child. Her view on what that diagnosis really does (as well as her candor on how she was handling it herself) is kind of eye-opening. The post is called “D-day” and you can read it here.
Also, if you want to read her initial reaction to the diagnosis, read her letter called “Welcome to the Club” here.
My ideas on how to help support families aren’t all my own. They aren’t even completely related to how things went with my son. They come from my evolving view of autism from a professional and parental point of view. As I’ve watched Early Intervention jump in to support families, it goes all kinds of different ways – it looks messy and families are still grasping at all kinds of straws. I’m not sure how much “support” families feel as they are left to figure it out with EI being only a piece of what they might be told they need.
The parts that do relate to me are this: parents are scared. They don’t see hope. They don’t know if what they’re doing is right. They want to know it will all be ok. To be honest, it’s only recently that my husband and I have had conversations that relate to hopefulness and a future. My son is 16, an 11th grader in high school. It took until 9th grade for us to see how things might actually work out for him. And even though everything isn’t perfection (his grades…meh), we see his interests growing into something he can do in the future. We see college in his future, but what that experience looks like (i.e. community college/living at home? Going away and not seeing us for weeks?) is still very much up in the air. But we are confident that we can help him make those decisions based on conversations that will be informed by his strengths, needs, and overall experiences he’s had and how those have worked or not worked.
This is what we need to focus on at all ages. As parents, if you have a child who is too young to tell you what they think, you are going on what you *do* know…what works well for them, what doesn’t; what they are good at, what they need a lot of support to do. And nothing else – other people’s experiences, the new “cure” or technique, all of the so-called experts – should convince you to go against what you know better than anyone.
Your child.
Google as Parent Support, Part 2
Now you have a taste of my slant on the autism world. Autism Speaks = damaging. Autistic adults = enlightening. There are also many parents of autistic children who “get it” and write beautifully on their real lives without it becoming all about how difficult the world is for me because I have an autistic child. If you check out my blog roll on the left (under the folder tab), you will see a large list that includes both autistic adults and parents. There are plenty more, but these are the ones I’ve been tuning into lately.
To round out the discussion about what parents see when they go to Google, I’ll show you what was on the rest of the page the other night when I wrote my last post. First, there was this:
The first article talks about a study where parents with children who were diagnosed on the autism spectrum, were given intervention to help the engagement of baby siblings who were then undiagnosed. OK, not so bad, unless it spurs parents of otherwise typically developing children to therapize their 2nd child’s life JUST IN CASE they might have autism. Doesn’t seem like the best strategy for adding less stress to your life.
Also, is mouse sociability similar to human sociability? And are there autistic mice? Guess I’ll have to read that article to find out.
And last, but certainly not least, circumcision tied to autism risk. Really? There are so many things that someone somewhere has actually put money into studying to see if it relates to autism. But, circumcision? Wow.
Then, if you scrolled down the page a bit, you would see this:
This ranges from a story about devastated parents who went on to help their child “beat” autism, to the first person ever diagnosed with autism and then an article asking if you too are on the autism spectrum. So much information, but so little of it actually helpful and supportive.
Where does all this leave us? Where do we go from here? I have a few thoughts. For next time.
The First Parent Support Resource…Google!
So, where to go from here….I mentioned support for parents. Let’s explore that a little further.
What do you think happens when a parent either suspects that their child has autism, or hears the word associated with their child for the first time? Where do they turn for information? Their friends? Parents? Neighbors? Um, no…they go ask Google. So, tonight, I googled autism and found this:
Wow. I bet all of those hits are chock full of useful, carefully-worded, unbiased nuggets of information, filled with supportive and encouraging words about autism and where to go from here. Let me save you the trouble of looking up all 73 million results…not even close.
In fact, we probably don’t even have to move off the front page to see some controversial stuff. After skipping over the top hits that paid to be there, here’s what we find:
Looks benign enough, right? But I’ll let you in on a secret…once you are in the autism community, you end up choosing sides in a lot of philosophical, moral and ethical types of debates. The anti-vaccine vs. vaccinate-on-different-schedule vs. on-time-vaccines debate. The inclusion vs. specialized settings debate. The ABA vs. relationship-based approaches debate. Fun times, really. Just at a time when you need to know that the decisions you make will be the right ones, there are people on all different sides of said debates telling you what to think about this topic.
Back to controversial. As helpful as Autism Speaks has seemingly been to many parents, their organizational practices remain questionable. First and foremost, they do not involve autistic adults in their organizational structure or planning at most levels, and particularly not at any critical level. As such, their “voice” is strictly that of parents and caregivers of children on the autism spectrum. Is this bad, per se? Probably not if they were honest with themselves about that fact. Their name, Autism Speaks, implies direct experience of autism. But the only direct experience they have with autism is as a caregiver. And that “voice” comes out clearly in their public persona.
Take this video. No, please, take it. In this video, titled “Autism Every Day”, the purpose is to introduce to you what it’s like living with autism as a parent or caregiver. Just watch a few minutes and you’ll get the idea, though the video is over 13 minutes long.
Didn’t that make you feel better? I know, right? If you really want to get the full impact of this video, start at 6 minutes in and watch for about 30 seconds.
Now, it’s not that I want all of these stories to go away or say this isn’t someone’s experience with caring for a child with autism. And I want these families to feel supported in their stories. However, do I think this is the overriding message that any parent should get when they are looking for information on autism? N…O!
To drive home what I’m saying, take a look at this video from an adult autistic. Just watch a few minutes or scrub through to different parts to hear her message.
The overriding message of Autism Speaks is that autism needs to be cured and eliminated. This message is given over and over. If, in fact, you are an autistic adult…how would that make you feel? And if you are a child on the spectrum with parents hearing this message, your experience is probably not one of unconditional acceptance for who you are right now. It’s a lot of therapy and medication and other non-childhoodlike experiences that are working to change everything about you.
I’ll say it again…soul damaging, my friends.
Here’s How I See This Working
This blog will capture resources and information for the people who support very young children on the autism spectrum…parents, therapists, family members, etc. It will be written from my biased, yet informed, point of view.
I chose this topic for a few reasons.
First of all, I work closely with a program in Pennsylvania that serves infants and toddlers who need early intervention supports. They receive those supports in their homes or community settings where they spend time (e.g. child care). We have worked really hard to support the early intervention therapists who support families with young children with autism. So, this blog may support that effort.
Second, I have a child on the autism spectrum. I am part of a family that has needed support at times from professionals in and out of the system. I have a desire to help families start out their journey to support their own child without fear, guilt, and all of the difficult feelings that come with this diagnosis. That’s a lofty goal, I know. We have completely demonized the word autism. But even if I can help support one parent to not feel the world crashing down on them, that will be enough.
Last, but not least, there is so much information about autism and what is “best”. Some claims tout research to back their particular brand as the best thing out there and poo poo all the rest. At the other end of that spectrum (!) are the worst forms of snake oil salesmen around…preying on families in such a vulnerable state they would do anything to see a change in their child, even things that put their health at risk.
It is my hope to pull together information that has a different slant. I currently read blogs and information put out by adult autistics. It is exceedingly helpful as a parent to hear their words and experiences and know that my child has a future. It is less positive to hear the many stories of the difficulties they faced as children, when the world around them, including their parents, worked hard to change everything about them. This creates damaged souls, my friends. It is my hope to free a few of those souls from the damage that is yet to come.
Autism Support in Early Intervention 