FAQs

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{image is a sign reading FAQs}

Oh, hi. How are ya?

As many of you know, I get a lot of questions from readers, especially on Diary’s Facebook page. Many of the questions are repeated as new readers join the conversation. That said, I thought we could save some time with a short cut for sharing the answers. This isn’t perfect and it’s definitely not complete. It will be a living / evolving document. But here goes.

 

Who are you?

I’m Jess. Read more about me and my family here. And here.

Why do you use pseudonyms?

For the safety and privacy of my girls.

What are the girls’ real names?

Well, if I told you, that would kind of defeat the purpose now wouldn’t it?

How did you choose their pseudonyms?

Not telling. You’ll get over it, promise.

Is Luau’s name really Luau?

Nope. It is, however, a nickname that he’s had since college.

How do you pronounce Luau?

Like the Hawaiian party – Loo – ow.

Is your name really Jess?

Yes.

Are your dogs really named Lucy and Winston?

Um, yeah.

Could you tell us more about Brooke’s experience with puberty vis-a-vis autism?

No.

Still no.

What do you mean when you talk about presuming competence?

This.

And this.

And this.

But it’s really, really important to also understand this.

How can I contact you?

Unfortunately, I don’t have a public email address and the Facebook page doesn’t have a message function. That’s by design. As much as I wish I could, I am both physically and emotionally incapable of managing 242,000 individual conversations. That’s why I started this. Please feel free to use a pseudonym to ask questions and then subscribe to the comments to help one another. I also highly recommend the Facebook page Parenting Autistic Children With Love and Acceptance. They take questions and pose them to their readers for feedback. It’s a wonderful resource.

May I use your photos?

Thanks for asking. No.

May I share a Facebook status from Diary?

You never have to ask to hit the share button. Just please don’t cut and paste and, as above, please, please don’t take pics of my kids. That’s just not right.

May I share a blog post?

You may always link to anything here without asking. You can’t, however, cut and paste without attribution. That’s plagiarism and it’s illegal.

Why do you seem to kowtow to autistic people?

Because I’m not autistic.

Isn’t kowtow an awesome word?

Yes.

Was that really a frequently asked question?

No.

Why do you get so hung up on things like the Sally-Anne test for Theory of Mind and the assumption that autistic people lack empathy?

Because the first is fatally flawed and the second is a lazy shortcut to dehumanization that I see disproven in my home daily. To put it another way, this.

Is Brooke a sensory seeker or a sensory avoider?

Yes.

Why do you seem to talk about Brooke more than Katie?

Because Katie is 14 and has her own social media accounts. She often prefers to share her own photos and stories on her own pages rather than have her mom do so on hers. I get that, and I respect it. I never, ever post photos without permission from BOTH of my children, and even then, I still decide whether or not I think it is appropriate.

Where can I find the cell phone contract you made with Katie?

Here. And here.

I know that Brooke loves amusement parks, but they’re impossible for my kiddo to handle. How do you do it?

We have found that most parks have a disability pass that is available through guest services. Call and ask ahead of time. They all have different accommodations, but they can make the difference between success and a whole lot of wasted time, money and misery.

What is stimming?

This.

How do you feel about ABA?

I think that parts of it can be extremely useful. I also think it’s a minefield and parents need to be extremely informed and critical consumers of it, just as we should with any therapy that will have a long-term effect on our child.

What do you mean by sensory overload?

This.

What do you mean when you say that behavior is communication?

This.

And this.

What is scripting?

Scripting is the more colloquial term for delayed echolalia. In our house it looks like this. And this.

What does NT stand for?

Neurotypical, which is used to refer to a person with a typically developing brain. Non-autistic people are sometimes referred to as allistic, though Brooke prefers her word: “Nautistic,” pronounced, “NOTistic.”

Why don’t you talk more about the hard stuff?

I do talk about the hard stuff, but I don’t talk about the kind of details of the kind of hard stuff that should be private. Because if I were twelve or fourteen or, well, forty-five, I wouldn’t want my hardest moments described in detail by my mom for the entire world to see. Forever. It’s a matter of respect.

But doesn’t that give a skewed view of autism to those who aren’t otherwise familiar with its challenges?

I don’t think you need details to understand that it’s challenging to be autistic in a world that’s not. It’s challenging; take my word for it. But someone else’s need to prove that will never trump my respect for my daughter’s dignity and privacy. She comes first. Always.

I suspect that my child might be autistic. What do I do?

Talk to your pediatrician. If they are dismissive of your concerns, you might consider talking to another pediatrician, not because you’re necessarily right, but because no doctor should be dismissive of a parent’s concerns. For us, our pediatrician recommended a speech therapist who immediately became the gateway to a diagnosis and the help we needed. Other good resources are children’s hospitals, neuropsychs, and your child’s educators.

My child was just diagnosed and I’m freaking out. What should I do?

Know that freaking out is okay.

Now know that a lot of what you’re freaking out about is misinformation, so you can stop freaking out.

Read this.

And this.

Breathe. It’s going to be okay.

Did you always feel the way you do now about autism?

Nope.

What’s wrong with the terms High Functioning and Low functioning?

The former minimizes challenges and the latter dismisses competence. Both create a false dichotomy that separates autistic people in ways that simply aren’t accurate nor helpful but rather dehumanizing and dangerous. When some try to claim that it’s okay to say awful, scary, dehumanizing things about the more disabled “end of the spectrum” because “they don’t understand,” firstly, I call challenge because I believe that most of them DO understand, and either way the societal results of doing so are disastrous, but I also say this:

“I can assure you that my daughter would not — could not — separate herself from her more disabled brethren, defining herself as something other than they, something that is, according to someone else’s twisted thinking, more sentient, more fully human, by virtue of being less autistic. I can think of nothing less humane than trading someone else’s dignity for one’s own. My daughter wouldn’t do it, nor will I.”
.
Read that in context here.

What’s been the most important / rewarding part of the autism journey for you?

Knowing that it’s not my journey, but my daughter’s. Seeking out the help, guidance, and friendship of people like her.

Why do you think it’s so important to tell our kids about their diagnoses?

Mostly this. And this.

How should I tell my kid s/he’s autistic?

Remember that s/he is taking their cues from you. If you go into this as though you’re about to issue a death sentence, your kid is going to pick up on that. Don’t. If your kid is like mine, a single conversation isn’t happening, but for others, here’s a pretty good model.

My child is aggressive. What should I do?

This is a great place to start. Also, an FBA (functional behavior analysis) can be very helpful in determining what your child’s behavior is communicating. It seeks to understand the context of the behavior in order to determine the root cause or motivation of it. An FBA is typically done by a BCBA (Board Certified Behavior Analyst) or psychologist. However, please see: informed and critical consumers of ABA before proceeding.

What is Neurodiversity? Doesn’t that mean giving up on helping your kid? 

No. Neurodiversity is this. And it’s not this.

Why don’t you talk about vaccines on your blog?

Because they aren’t a part of our story. Our children are fully vaccinated. If we were to have another child, s/he would be too. That’s about all you’re going to get on that topic from me.

Do you only accept comments from people who agree with you?

I love that one. No. I actually really like comments from people with vastly different perspectives than mine and I find that I learn the most from those who tell me I’m just plain wrong and respectfully explain why. But I do have rules about what gets published and what doesn’t and I do my best to enforce them, though it’s getting harder as the blog grows. Anything meant to flame, troll, or make others feel unsafe is deleted without discussion.

Are both of your girls autistic?

Nope. Just Brooke. Katie is neurotypical, or, if you prefer, typically developing. Truthfully, she’s anything but “typical” but she’s nautistic.

Why do you refer to Brooke as autistic instead of using “person-first” language?

This.

And this.

Why don’t you (and nearly every autistic adult you know) support Autism Speaks?

After supporting them and trying desperately to help guide them for many years, I finally gave up. Here’s why:

This.

This.

And this.

And this.

And this.

There are a LOT of other posts out there that I will ultimately link to, but in the meantime, here is a very easy-to-read flier put together by the Autistic Self Advocacy Network.

When was Brooke diagnosed and with what?

She was initially diagnosed at age 3 1/2 with Classic Autism and every year thereafter in yearly evaluations. A few years later, the diagnosis was changed to PDD-NOS, which stands for Pervasive Development Disorder – Not Otherwise Specified, which has also been affirmed every subsequent year. She’s still autistic, with a longer label. More importantly, she’s still Brooke.

Who diagnosed her and how did you find them?

A neuropsych at a local autism center affiliated with Mass General followed by a second opinion a few months later at Boston Children’s Hospital. When Brooke was five, we found Dr Dreamy and have seen him every year since. If he ever moves, we’re going with him.

What were the early signs that led you to believe she was autistic?

The signs didn’t lead us to believe that she was autistic because we knew nothing about autism. The signs that led us to seek help included but were not limited to the following.

Her speech was entirely echolalic, or scripted. She repeated words and phrases, but was unable to generate novel speech, which led to a great deal of frustration in communicating.

When the first specialist we saw asked questions about her play,  the conversation looked like this ..

What does she like to play with?

Legos.

What does she do with them?

Lines them up on the floor.

Does she draw?

Well, no, but she loves to play with magic markers.

Oh? How so?

She lines them up end-to-end on the floor.

Etc.

She was frustrated a lot. Like A LOT. It was heartbreaking.

She had crippling anxiety which caused significant motor planning challenges and a reluctance to try anything new.

She avoided eye contact.

The first time she said, “Look, Mom,” and drew my attention to something that she wanted me to see, it was just shy of her sixth birthday. It was a blue house.

Her method of interacting with us was to say half a word and look to us to finish it. That was the beginning of dialogue and it lasted until she was about six.

She would get overwhelmed easily. And yell. A lot.

She sought out spider webs. Everywhere.

She seldom responded to her name.

There was a lot more, but the bottom line was that she was struggling and we knew we needed help to help her.

Have you tried biomedical intervention / special diets?

No. We spend a lot of time observing Brooke’s reactions to just about everything, particularly gluten and dairy given that some folks have sensitivities to those foods that can cause discomfort that she might not be able to describe. She has never exhibited any of those sensitivities nor has she displayed any kind of gastrointestinal distress. Some time ago, her doctor tested for Celiac given her slow growth / low weight. That test was negative and she’s since sprouted and gained seven pounds. My kid does everything at her own pace.

Is she on medication?

I used to answer this. I don’t anymore. She can decide someday if she’d like to tell you.

Why don’t you think your kid is kicking autism’s ass?

Cause she’s autistic. Autism is part of the fabric of who she is. To kick its ass would be to kick her own ass. It just doesn’t make sense.

Why do you get so upset about people saying that we need to fight / cure / prevent autism?

See the last question. And this. And this.

Where can I get those Autism Acceptance t-shirts you sold a while ago?

Here, along with some of Brooke’s art. A portion of the proceeds goes to the Wounded Warrior Fdn, ASAN and St Jude’s. The rest goes to more art supplies for Brooke.

What is LRE?

It stands for Least Restrictive Environment, which is part of the requirement of IDEA (the Individuals with Disabilities Education Act), which seeks to ensure a FAPE (Free and Appropriate Education) for every child in this country. I don’t think that LRE always means what people think it means though. Read this to see what I mean.

Do you believe in inclusion?

With all my heart. But that doesn’t mean that our kids don’t need places that work for them. This.

What’s a walking yard sale?

Years ago, when both of us had small children, my friend Brenda got out of the car after a very long trip with her husband and kids and said, “I swear we’re like a walking yard sale.” With her blessing, I’ve used it ever since to describe myself and my rag-tag bunch. We’re often running late, always forgetting something, usually can’t find something or someone, almost always dropping things, and generally just trying to stay out of our own way. I love the imagery of a yard sale being picked up and moved, which is pretty much impossible to do. It just fits.

 Why do you describe your photos?

For my blind or visually impaired readers. When I found out that they can access the blog and the Facebook page using page readers, but that those readers don’t describe images, I began to add the descriptions. I try to do it in a way that adds to, rather than detracts from, the posts. I hope I succeed in making them fun to read. If I ever forget, remind me!

What’s up with Godspell?

Start here.

Why do you write <sarcasm> and <hyperbole> when you write?

Because many of my readers are literal thinkers and tend to take language at face value, making sarcasm and hyperbole very challenging.

What kind of school is Brooke in?

She is currently in seventh grade in a classroom in a public middle school that has been designed specifically for autistic students. She has six classmates, all of whom are on the spectrum. Services / therapy / supports are woven throughout their day. She travels with the group to some academics while others are taught at her home base. She attends a mainstream homeroom as well as art, chorus, health, etc. with an aide. The aide also accompanies her to play rehearsals, one of her favorite things in all the world. She has adaptive PE.

What was her elementary education like?

She was in integrated classes throughout preschool and elementary school. Her preschool was approximately 1/3 typically developing kids; the remaining 2/3 had various disabilities. From Kindergarten through third grade, she was in a mainstream class with a one-to-one aide. In fourth and fifth, she was in integrated classrooms. Looking back, I’d have pushed to have had her in smaller, more tailored programs like the one that she’s in now, but there were benefits to full inclusion as well.

Did she have Early Intervention?

No. She wasn’t diagnosed until she was already three, so we missed the deadline.

What are some of the best OT related things you’ve bought / found / been given for Brooke?

Her peanut ball. Thank you, Aunt Jersey!

Her Yogibo.

Her weighted blanket.

Weighted lap pads.

What’s the yellow bracelet that she wears? Where can we get one?

It’s actually a stretchy keychain. I bought it for her a few years ago in an attempt to redirect a particular SIB (self-injurious behavior.) She can chew it, stretch it, and twirl it. I bought like ten of them. She’s never taken that one off. I have no idea what happened to the other ones.

What therapy do you think has been most helpful for her?

Speech therapy, social pragmatics groups, acceptance, and the presence of other autistic people in her life.

What has been most helpful for you?

Meeting autistic adults. Hearing their perspective. Shifting mine. Beginning to understand hers. There are a ton of links over there on the blog roll under Vital Perspectives From Autistic Adults. Click on them. Read. Get to know them. There are some pretty extraordinary people out there.

**

Additions in response to reader questions:

Your sister’s name is Jess? Really?

Yup. It’s not quite as odd as it seems when you know that she’s actually my step-sister, but given that we’ve been together since she was seven and I was eight (okay, fourteen, whatever) and we love each other dearly, we dropped the “step” years ago.

Why didn’t you respond to my comment? Are you mad at me?

I try really hard to read and respond to every comment that needs a response. That said, there are 242,000 of you and one of me. I work full-time, am a mom full-time, and do this alone. So no, I’m not mad at you; I probably just haven’t seen it.

What breed are your dogs?

According to our vet, Lucy is a puggle (a pug / beagle mix) and Winston is a King Charles Cavalier. Both were rescues and I’m a big, big proponent of adoption. Please, please consider rescue if you’re looking for a pet. This is a great place to start.

How did you tell Katie about autism?

She was only five at the time that Brooke was diagnosed, but she was arguably more in tune with her sister than anyone else. So the language was pretty simplistic, but we talked about the fact that people each have different things that they’re good at and different things with which they struggle. We talked about specific things that she’s good at and some things that are harder for her. Then we talked about specific things that her sister was good at some more things with which she struggled. (At the time, the latter list appeared to be much longer than the former, so we also explained that we knew that many more things that she’s good at would appear over time as we helped her with the things that were challenging. (And they have.))

We then told her that sometimes there’s a name for someone’s differences. The name for her sister’s way of thinking / processing / experiencing the world is called autism, and it means that she often needs extra help to be able to do things that might seem easy for others. (We didn’t know yet that it could also mean that some of the things with which others need help might be easy for her.) We then talked about the fact that a family is a team. That we all help each other where we can in order to make sure that we all get what we need. We told her that “fair” is not always “equal.” And that that’s okay. We also made, and continue to make, a concerted effort to spend time individually with the girls. They both need and deserve that.

I’d also add the following …

Over time, as our circle began to widen, we included Katie in our relationships with autistic people. Like her sister, she doesn’t just hear from us that we respect and admire and have meaningful and rewarding friendships with autistic people whose abilities and challenges span the spectrum, she sees it. While she is well aware of the disabling aspects of autism, she also has a deep appreciation for autistic people and a lot of respect for their identity and culture, as we all do.

Why do you write “like = I get it” on some of your posts? Are you fishing for likes?

Nope. I’m not selling anything so promoting the posts is never my intent. I put it there because readers often say that they wish there were an “I get this” button on Facebook. When I see a post about something hard or frustrating or sad, I often want a way to show solidarity – to acknowledge that I understand – without implying that I actually “like” it. So I create it by changing the meaning of the “like” button at will.

Why haven’t you written a book?

See: Working full-time, mommying full-time and running this blog pretty much full-time. There’s not a lot of time left after all that full-timeness. But I’m working on it. Promise.

How do you keep your house so clean?

I can’t tell you how hard I laugh every time I get this one. (Hard.) My house is a mess. Seriously. I’m not just saying that. It is a MESS. Like to the point where my dad, who is very easy going, points it out in a twice yearly, “You really need to get your house together, Jessie” speech. Which is particularly sad because we clean before he comes. But there’s usually at least one safe space or, if not, one angle that I can manage that doesn’t show the mess. You might notice that a lot of my pics are taken in exactly the same spots in my house. There’s a reason for that, people.

Do you ever slip up and call the girls by their pseudonyms in real life?

No, but I do have to stop and think when I’m writing, and it does get difficult when I’m speaking to people who only know them through the blog. Oh, and I did once write an entire letter to Brooke’s support team referring to Luau as “Luau.” Oops.

Do you have any idea how hashtags are supposed to be used?

Yes. I also don’t care. I find my hashtags funny. #CheapLaughs #YoureWelcome

This will be a living document. I will add / edit as we go. If you have further questions that I’ve failed to address here, please feel free to leave them in the comments below.  

71 thoughts on “FAQs

  1. I have worked in the special ed field for over 15 yrs. The major of the children I have worked with have been on various ends of the spectrum. I have heard some many perspectives on autism. Yours by far is the most positive. I love your unconditional acceptance and support given to both your daughters. While I know every case is different I feel like your blog should be required reading for all parents, professionals, and support staff. I know every day isn’t a picnic I get that however you never dwell on it you keep moving forward and that is simply amazing! Thank you for sharing your families story with us!

  2. I have been following your Facebook page since my grandson was diagnosed last year. I do comment sometimes but never have my questions straight in my head to ask. Right now he is 3 and still mostly nonverbal. You mentioned that Brooke lined up her Legos.. my boy does that with matchbox cars. Recently his lines have evolved.. instead of just straight lines he’s now making lines of circles with them.
    We did try ABA as they tell you to… but we could never make sense of what they were actually trying to accomplish. Now we have taken the unpopular stance of limiting his therapies to school… home is his safe place. Does any of this make sense or am I rambling?
    My most important question is how did you explain autism and what was happening with Brooke to Katie? Our guy has an older brother and a younger sister. The baby is blissfully unaware but I’m having trouble explaining it to the older brother

  3. Thank you. This answers many of my curiosities. Been following you for a year or two. My own Brooke is 36 now. Wish I had your insight when she was coming up through school. Any advice for parents of adult autistic children; autistic adult children?

    • Oh gosh, I feel unqualified to offer advice on something I’ve yet to experience, but I would think that finding other autistic adults, connecting with them and their families would be helpful for both you and your daughter. Whether it’s through a supported living environment or other supports that she may have, I would imagine there would be opportunities to connect with others who could relate to both of your experiences.

  4. thank you for the FAQ. I have been following you for a little over a year on facebook. This makes it so easy to find the answers to some questions that I’ve had. I have commented a couple times on Facebook but a lot of my family is still in denial about my son. So, they think I’m over reacting a lot about his behaviors and the struggles he is going through. This can be very lonely and I’m appreciative of what you share of you family to try to give us all some insight.

  5. Thank you for getting it. Sometime I feel my views on those with special needs are rare and a bit insane (such as making people fit into “normal” behaviors). As a teacher and parent of those with special needs, I find this blog so informative and inspirational to keep doing what I’m doing.

  6. Pingback: Diary of a Mom – FAQ – tons of awesome | Spectrum Perspectives

  7. Thank you.
    I look up to you and Luau.
    Brooke and Katie.

    I am intrigued by autism.
    Many people including myself, do not fully grasp nor will fully understand the challenges and victories accompanying autistic children/people.

    Ive read books and stories and everytime i try to understand a little more.

    They are special.
    In more ways than one.

    Jess, keep on inspiring.

    I hope the world listens.

    Kindest regards, allll the way from Namibia, to you and your amazing family.

    ❤❤❤❤

  8. I just have to say THANK YOU! so much for mentioning the weighted blanket and weighted lap pads. I didn’t know such things existed nor did I realize that when my anxiety is crippling me and I have a few heavy blankets wrapped around me that it isn’t just a comfort thing – but is [scientifically] relaxing and calming me. I also will ask either my mom or brother to ‘squeeze’ – a sit down, extra strength, long lasting hug. I definitely just rambled…. a lot…. But seriously, thank you. I’m already trying [planning] to figure out how I’m going to afford at least a blanket, and fast, because I know its going to be an incredibly helpful item.

  9. Just reading all your FAQs. My son was recently diagnosed. (he’s 10, but he was misdiagnosed). This is all so new, and scary. So, thanks, mostly, for saying it’s okay to freak out because every.single.other.person has told me to be grateful for a diagnosis, and I’m still, well, in shock. Love your blog and facebook posts. I found you quite by accident, but I’m really glad I did.

    • Freak out! Yeah, I’m grateful we finally got a diagnosis, and the doors it opened to get my son the services he needs, but it’s a huge deal, especially if you were not expecting it, and, therefore, didn’t do any research on it, making it a great, scary, mystery. My son was diagnosed at 5, just over two years ago, and I still see things, new symptoms, I guess you’d say, that catch me off guard, and I worry about his future. That’s normal. I think the ones who say they don’t, or didn’t, freak out are lying to themselves and everyone around them, or have found some magic fairy dust that makes normal concerns go away! lol

  10. I started following your page about a year ago. When my son was diagnosed I knew no one whose child was like mine. It was an uphill battle somedays and then I found you and your page. I realized that it’s not just me. In the past year you have given me so much insight and advice without even knowing it. And for that I thank you! I realized that yes there will be tough days but also to enjoy the good days with my son and not dwell on the bad. It has changed my life and his.

  11. This is much appreciated! With one 8 year old “step” (whatever) grandson diagnosed, and his 2 year old cousin with whom it is being considered, this information, insight, and awesomeness is very helpful. “Stimming” has definitely become a part of my vocabulary, when I used to just say “WHY does he do that??” Now, (thank you) I am the one surfing the net, looking for things to help.

  12. This is awesome! I’ve been following you on Facebook for a little over a year now, and checked your blog out many times, but this answered some questions I hadn’t yet figured out how to ask (Luau’s name! I’ve been saying “lou” in my head, simply because “lou-ow” didn’t make sense, but neither do my kids’ nicknames! lol) I plan to check the links you added out, when I get a chance (have got to start my boy’s lesson’s like an hour ago now!) but wanted to thank you for clarifying the bit about high-functioning versus low-functioning.
    I’ve been guilty of saying my son is high-functioning in the past, not to separate him, or make his diagnosis smaller, but to help others understand that just because you can’t “see” the Autism all the time, doesn’t mean he doesn’t have it. I also found out last January that he has Duchenne muscular dystrophy, which has “extra” symptoms that are very similar to Autism, but not quite (it’s hard to explain; he’s been diagnosed by two professionals, but even they say he has “just enough” markers to say yes, it’s Autism) so it makes it harder for outsiders to see some of his quirks and associate them with Autism, when some of his other quirks don’t match. Again, it’s hard to explain, and navigating two associated, but very different, diagnoses does nothing to make it easier! Basically, even though my concern switched to the muscular dystrophy, and trying to slow it’s progression, I won’t be qualifying his Autism anymore. He has it, get over it. I wouldn’t qualify his Duchenne like that, so why would I do it to his Autism? They both are in his DNA, and neither has plans to leave (though I’d sell my soul for the Duchenne to vacate!) and both affect him hugely, so minimizing either is just wrong and unjust, for him, and us. Thank you for helping me see that ❤

  13. Where is your Mom’s comment??? I love everything about you and your family.. but your Mom’s comments tops the list 🙂

  14. I love your family and your blog! It makes me smile daily!
    My second son is almost 17. I’ve believed for many years that he fits somewhere on the spectrum. As a baby and toddler he avoided eye contact. Everyone said he was “such a serious little guy”. I would take him to play groups where he would find a corner to himself and I would watch the kids try to play with him and he would just head to another corner. He’s so very smart and did many things early. He’s had a Lego “thing” for years. He will still sit for hours and build. Never needed instructions. As he’s gotten older his focus has been music. Guitar and Bass mostly but he’s very gifted. He is very noise sensitive (unless he is making the noise) and has texture issues with some foods. The list goes on ,but I forget who I’m talking to!
    I attempted to get some sort of diagnosis when he was younger but I was told that I was just trying to jump on the “my kid’s on medication” bandwagon and sent away with an ADD diagnosis and a script for something to sedate my kid. I ignored both. So I did what I knew how to do. I listened. He’s done alright but I divorced his father and things went a little crazy. His dad doesn’t get it and actually reprimands him for not hanging out with his peers. So he has discovered that alcohol and Marijuana make this more bearable. I’m terrified. After wrecking his truck (and a whole lot of chaos) I finally got his father to agree to some counseling and some anti-anxiety medication. I’m hoping that he won’t feel the need to self medicate any longer.
    I know you’re extremely busy and I don’t need a reply. I’ve just spent years dealing with this and nobody would listen to me without giving me that look. You know, the one that says, “you spend way too much time on Web MD!”
    Your blog and fb page have helped me look back at some of my son’s little “quirks” and smile. I found the page by accident and I’m so very glad I did. Thanks so much!

  15. I love that your daughter enjoys theme parks! They can be such a great way for children with disabilities to have the opportunity to enjoy something just like their peers. My nonprofit partners with two local theme parks to offer exclusive nights for individuals with special needs where we make accommodations to best serve the special needs community. I would love to invite your family to visit us by provided you tickets for our next evetn (March 6th at our indoor water park). Please reach out if you are interested in attending!

  16. Wow. This is just brilliant. So much I can relate to (although I don’t have a sister called the same name as me ;)). Love your blog and agree it should be compulsory reading for everybody 🙂

  17. I’ve been researching autism/asd for about a year now, in hopes of being diagnosed – mostly because I want answers and support. Your blog has been a huge help, both in answering questions and in directing me to blogs by autistic people. There are so many experiences that I share with Brooke, as well as your good friends Emma and Sparrow, and it’s been really comforting and relieving that I’m not a freak, which is how I’ve felt a lot of times.

    • Thank you so much for sharing this. Above all, I am so glad that I could provide the bridge to people like Sparrow and Emma. I’m so sorry for the hard and so happy that you’re finding some light. xo

  18. Jess, I love reading your blog and your Facebook page. I think that you are the best I’ve seen at the integration between the two. I am starting a new blog and have a couple questions: 1) do you have two separate Facebook accounts in order to keep the page anonymous, or it is anonymous just by posting as the page? 2) do you actually write a blog post and a separate Facebook post with a link to the blog, or are the two connected? Thanks!

    • the page is separate from my personal account. when i post / comment, i do so within the ‘pages’ app on FB, mostly so i can’t screw up by mistake 🙂

      i write them separately 🙂

      good luck!

      • Thank you for such quick feedback! That helps me to know I’m on the right track. Thank you also (while I’m here) for your blog. While my kids are all neurotypical, as am I, your blog has really helped me grow as a parent.

  19. Love your blog…Behaviour is Communication…I present a workshop entitled the same….mostly to teacher, education assistants and parents of children with all different challenges. My website is http://www.beyondtheboxbasics.com and wondering if I can have your permission to use this blog as part of a handout for my presentation..and credit and source would totally be given to you…and I usually do not make many dollars doing this….often not paid or very minimal…..thanks..Barbara Laird

  20. Your words have meant so much to me over the past 4 months, when I finally found you due to a friend sharing one of your FB posts. I just wanted to thank you for “getting it” and for being out there, living the daily challenges with all of us.

    I just had this piece published on my company’s parenting blog & I wanted to share it with you, because you have shared so much with me. I hope you like it. http://jnjparents.com/content/raising-an-autistic-child/

  21. I’m wondering if your daughter attended infant-toddler care, and if so what worked for her/your family and what did not work?

    • She did not. Luau was home with the girls during the day until the started preschool – Brooke began at a typical preschool then transferred within a year to the town’s integrated program.

  22. Dear Jess,
    I’ve read some of your articles and I really enjoy them. I just want to share with you a little bit of my life’s story here because I think you might find it very inspiring for your own family.

    I have high functioning autism, and didn’t even know I had it until 18. Growing up, I had all the signs my family and teachers managed to miss- walking and speaking very late, having sensory issues, meltdowns, low social skills. I was in special education classes until 5th grade and had very few friends until I was in my late teens. My poor social skills and obsessions led me to developing an eating disorder that lasted most of my adolescence and an abusive relationship that lasted nearly a year.

    Yet, my autism gave me some advantages. I loved learning and I had a great memory. I went ahead on homework assignments and found regular school so challenging I started college at just fifteen. By seventeen I was taking third semester calculus. At eighteen I came into my current university with 70 credits (junior status). And well, it was finding out about my autism that finally allowed me to change all my relationships for the better and take a different approach to having a well rounded life.

    Today I’m 20 years old and graduating UC Berkeley in 3 months. I have many friends and have even dated. I bought my own car this year and have already worked at 2 entry level jobs, with one secured for me as soon as I graduate. I eat healthy and have a good relationship with my body. Although my history with having a learning disability still gives me a few specific disadvantages in my life, I’ve learned that it’s not about having a normal life but living one that’s happy and putting myself first. I just want to say that even though I well know by now autism is a spectrum in every way, your daughter has a very straight chance at a fulfilling life and I am so glad you are fighting against the stigma Autism Speaks often promotes. It’s just scary for me to think that if I was born before the late 70s or even living in certain countries today, had my diagnosis been obvious early in life I would have likely been institutionalized for life. And that is why it’s so important for families, caretakers and people involved with those like myself to fight for self advocacy more than anything else, because that’s my very goal as someone applying for special education credentials this year. To help those like myself and live your daughter live the very good life I have today.

  23. Hi Jess

    Firstly, congratulations on such a well-written, beautiful blog. I’m relatively new to your site, discovering it about 2 months ago and I’ve been following your posts on Facebook ever since. I’ve read through some of your older stuff too. It seems like you and your family have been on an amazing journey, you should be very proud!

    I am a dad to 2 autistic boys, aged 7 & 4, and we are at a much earlier stage in our journey. We have a lot of challenges to deal with right now, which we try to do in a house full of acceptance and love. Having met and been inspired by so many wonderful people over the last few years I’ve thrown my hat into the ring and started my own blog about our life. I’ve decided to make my sleepless nights productive!

    Anyway, I’d be honoured if you could give it a read when you have the time, and would love any feedback you may have. you can find it here
    http://www.storiesaboutautism.com

    I hope you, Luau, Brooke and Katie have a great weekend 🙂

  24. I’ve been following your blog for a little over a year now. I ALWAYS try to be open minded, but you have shown me that I have more opening to do :-). (Don’t worry, that’s good!) I want to always be the best mother I can be, and I believe we all improve when we share our knowledge and experiences as humans (not just parents, siblings, spouses etc…).

    Anyway, because you always discuss how important it is to presume competence with all people of varying ability, I thought you might find this article very interesting. You might have already read it. It is very sad, but also encouraging… Hopefully your wonderful “Diary” community (which I’m so thankful to be a part of) can continue to grow and prosper and really share what it means to presume competence ALL THE TIME. Much love to you and your family!

    http://www.nytimes.com/2015/10/25/magazine/the-strange-case-of-anna-stubblefield.html?WT.mc_id=2015-KWP-AUD_DEV&WT.mc_ev=click&ad-keywords=AUDDEVREMARK&kwp_0=55020&kwp_4=314004&kwp_1=208083&_r=0

  25. Thank you so much for everything you’ve written. You are wonderful guide on this awesome journey. I thought of your wisdom this weekend when I was responding to a problem with my son’s upcoming ARD. The link below is what I wrote. I wanted to share it with you to say thank you for your inspiration and encouragement. I thank you from the bottom of my heart.
    https://docs.google.com/document/d/1V2U9ugr-MAF9G2N4myA6kIrQ-XAK0EVUDCwM3eyh_BI/edit?usp=sharing

  26. Thank you for describing your photos, it’s very much appreciated!!

    I laughed out loud when you said you wrote a whole letter calling Luau Luau! As in, full on, my family think I’m possessed laughing.

  27. Jess,

    Daniel needs to get braces and he knows that Brooke got them last year/year before(??). I wanted to read to him your post-I think you wrote a post- about it but don’t know how to find it. Thanks for your help 🙂

    Debbie

      • Thank you so much!!! He has so many questions. For example,on the way home he was like, “so when I eat, I take them out”. Plus about a dozen more.He doesn’t know of anyone at school who has braces, so he can’t put a face to it. Brooke is the only person he knows of with braces. He likes to hear about Brooke b/c he can relate. Anyway, I told him how brave Brooke was and he can be just like her. I told him she still has them and she is doing really good. I hope this helps. Thank you again!

      • I know I asked you for this info in April, but today is the day. (had to wait b/c we’re new patient). I used your info. when speaking to the staff on the phone. Fingers crossed. Thanks again.

  28. Hello Jess,

    My daughter was diagnosed as autistic about three years ago, and I have been following your FB page ever since. I read every post I see, and I feel it is a privilege to learn about your family through your kind and thoughtful perspective.

    I have noticed your posts lately have touched on Brooke’s epilepsy. It seems as if this is a new development, and I didn’t know if there is anything you could add into a blog post or the FAQ discussing when/how she was diagnosed. My husband was epileptic in his youth, and since my daughter (6 yo) is autistic I feel like she is at increased risk for this diagnosis. I’d be grateful for any advice on things to look for, or background on how you noticed it was emerging, etc. Thanks so much for all that you do.

    • elesa, it’s not something i’ve talked about in detail because it feels like that would be for brooke to do, not me. the first inkling though was when a teacher suspected absence seizures 3 years ago – which basically look a lot like zoning out / being dazed briefly. we’re still not sure if that’s what was actually happening, but it ultimately helped lead us in the right direction. i’m not sure about the genetic component, but autistic people do have a much higher rate of epilepsy than the NT population, so it’s definitely something of which we all need to be aware. xo

  29. I have followed your and your family’s experiences for several years now. I have laughed and cried with you and appreciate every word I get to read here. I will admit that lately I have fallen a little out of touch with your fb page/blog. But I have seen some mentions of Brooke’s seizures here and there. I’m not up on your posts enough to know exactly where you are in your journey with seizures but I wanted to share another option just in case. Are you familiar with VNS Therapy? Full disclosure: I work for the company who developed, manufactures and sells the device. But I also spend all of my work time and lots of my personal time just trying to help people with seizures and their families. VNS Therapy is designed for people whose seizures don’t respond well to seizure meds or who don’t tolerate the medication side effects well. It’s not for everyone. When drugs or brain surgery work, they are often curative or at least completely control seizures. In that case, those options are definitely the right choice. But sometimes those don’t work, about a third of the time, in fact. And VNS Therapy has given many people their lives back. If you’d like more information, I would love to help you get details and find a doctor in your area who treats with VNS Therapy. If not, please know that my thoughts are with you, your girl and your family as you navigate these waters.

    • Thank you so much. I don’t want to jinx it so I won’t write it “out loud” but it’s not something we need to look into right now. xo

  30. I wanted to let you know I sent the Autism Prep Class information that you had posted to my sons school guidance counselor. She sent an email to the entire school faculty asking them to please look into taking this course because she felt it would be a great assistance to them in the classroom etc. How great is that!! Thanks for passing the information on.

    Debbie

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