Tag Archives: Parenting

Question?: Rett Syndrome In Boys

Donald asks…

Survey: How aware are you?

today is autism awareness day and all of april is autism awareness month i want to see how aware people actually are by asking afew questions
answer with what you honestly know if you want to look up the answers after you answer yours feel free to but not till you answer first

Question 1. what is meant by “autism spectrum” disorders?
2. What are sensory issues?
3 true or false if someone is not diagnosed with an autism spectrum disorder by age 12 that means they dont have one.
4. true or false autism is very rare in girls
5.true or false autism spectrum disorders are obvious and you can tell right away if someone has autism
6. what is asperger’s syndrome?

bonus question: can you read this article then tell me your reaction and weather you learned anything new http://parenting.blogs.nytimes.com/2009/03/05/dont-judge-a-mother-until-you-know-the-whole-story/
oh and for why its in this section is because i feel in my opinion part of being spiritual is being in tune with the world around us and understanding others (or atleast trying to understand others)

admin answers:

1. The autism spectrum consists of classical autism, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder, and PDD-NOS. All these disorders involve social and communication issues in some way. The symptoms appear early in childhood and last throughout the lifetime.

2. Sensory issues are a common feature of autism spectrum disorders. Most frequently they are hypersensitivity or hyposensitivity, either in general or with specific stimuli. For example, I’m extremely sensitive to sound, and metal on metal is one sound in particular that’s painful for me. I’m hyposensitive to pain. Another common issue is difficulty filtering out background information, like music playing in the background. Sensitivity and filtering problems can lead to constant sensory overload.

3. False. The symptoms appear early on, but they aren’t necessarily caught early on. I wasn’t diagnosed with Asperger’s until I was 17.

4. False. It appears more common in boys, but the gender gap is actually a lot narrower. Girls are more likely to be misdiagnosed or undiagnosed for a variety of social and cultural reasons.

5. False. People with ASDs may not appear particularly unusual, or they may seem eccentric but not exactly autistic. If everyone could tell right away if someone had an ASD, mental health professionals are wasting their time with diagnostic evaluations!

6. Asperger’s is a mild form of autism. It’s very similar to HFA, but there’s no speech delay.

BQ: I liked the article. I think its meaning can apply to everyone – it’s important to not judge people right away, because you don’t know the whole story. What appears to be a poorly behaved child and an unconcerned mother is actually an overstimulated, anxious autistic child and a caring mother who’s trying to help him the best she can. Everyone has challenges that aren’t obvious from the outside, so it’s important to withhold judgment and keep an open mind, since there’s often more to a situation than meets the eye.

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Question?: Autism Symptoms Toddler Boys

Jenny asks…

odd toddler behavior?

my 18 month old girl, does something odd – she sits on the floor and puts her hands on the floor in front of her and rocks front to back. is this abnormal behavior, she is my first girl my other kids are boys and they never did this.

admin answers:

I studied early childhood development in college and sometimes you may see this behavior early on with children that have autism. BUT, don’t get worried right away since autism comes with a lot of other symptoms and behaviors.
As long as she is developing normal on the other milestones for her age (walking, trying to talk, etc…) I wouldn’t be worried about one thing.
Some babies also develop different ways of self soothing, a tiny step into their “independence”.
Keep watching her and take her to the pediatrician if it concerns you anymore.
Happy parenting and best wishes!

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Special needs parenting: is it time to brush up on your child’s disability?

If you are the parent of a child with special needs, it’s likely that you researched your child’s disability exhaustively during the early diagnosis stage.

Then you got busy, and tired, but now you are thinking it might be a good time learn about resources get caught up on the latest research and treatment. If you live in the San Francisco Bay Area, you are in luck. In the next few months there are countless opportunities to learn from renowned disability experts:

EAST BAY

Living with Disabilities: A Family Conference and Resource Fair

Sunday, October 28

Lamorinda Family Center
Lafayette-Orinda Presbyterian Church
49 Knox Drive
Lafayette, CA 94549

Pediatrician and autism expert Dr. Ricki Robinson is Keynote speaker and will discuss treatment approaches for individuals with developmental disabilities through their life.  She is the author of Autism Solutions: How to Create a Healthy & Meaningful Life for Your Child and has been in private practice for over 30 years, specializing in children with developmental delays.

Take part in a fun and informative resource fair that will include interactive booths with:

Dr. Clarissa Kripke (UCSF), Developmental Pediatrician
Dr. Deborah Sedberry, Developmental Behavioral Pediatrician
Nan Arkwright, Occupational Therapist
Dr. Megan Flom, Psychology, Assessment, School Advocacy
Shannon Des Roches Rosa, iPad for Autism Expert

To learn more and to register CLICK HERE

MARIN

The Marin Autism Lecture Series

The first Lecture was this past week, but there are several more left through May.

SOUTH BAY

Peninsula and South Bay Autism Lecture Series

Morgan Autism Center Lecture Series

The Morgan Autism Conference was Saturday, September 22 and it was awesome, but register for the lecture series by clicking the link above.

Future Horizons Autism and Aspergers Conference featuring Temple Grandin

SACRAMENTO

UC DAVIS MIND INSTITUTE DISTINGUISHED LECTURE SERIES

The UC Davis MIND Institute’s Distinguished Lecturer Series is now in its 11th season of public lectures by nationally and internationally-recognized researchers in neurodevelopmental disorders.  These monthly presentations (October 2012 – June 2013) are intended for both specialists and community members.  All lectures are  *free and open to the public* and no reservations are necessary.

SAN FRANCISCO

Support for Families of Children with Disabilities has ongoing lectures, clinics, support groups and workshops. Check them out.

That is all for now. I’m sure I am missing something, and I count on YOU to let me know. But do yourself a favor and pledge to go to at least one of these amazing events. Lets face it, being the parent of a child with a disability can be isolating and these events will not only educate and inspire you, but you will have a chance to connect with parents just like you. I’ve made some of my dearest friends this way.

***

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of my book HERE.

You’ll be hooked.

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Parenting (Autistic) Kids is Hard

“Be kind, for everyone you know is fighting a hard battle.”

Being a parent is hard. Really hard. When I say that, I don’t mean that I wish that I hadn’t had children or that I wish they were easier kids. I mean that raising other human beings that you love more than you love yourself is breathtakingly difficult.

Your child’s struggles—his anxiety, her aching desire to fit in, their stumbles and bumps as they travel their roads to become adults responsible for themselves—can be inspiring, heartbreaking, hilarious, scary, remarkable, stressful, unexpected, delightful, worrisome…add your descriptor here.

Sometimes it is many things at once.

It is impossible to know what it is like to be a parent until you are one.

Ever since I started blogging about my kids, which has been five and a half years now, I have consistently gotten emails, messages, tweets, personal hugs, and all other manner of communication thanking me for my honesty in writing about just how damn hard it is to raise kids. People tell me that they thought they were the only one. They tell me that they thought they were alone. They tell me how much it matters to them to know that they are not the only ones who are struggling.

Sharing that bond over the difficulty of parenting and acknowledging that it is so hard and even that sometimes our kids are assholes, well, that acts as a safety valve that releases pressure. Knowing that we are not in it alone, especially if the act of raising our children isolates us from each other, sometimes helps us make it through a heartbreakingly scary day until we can get to a delightful one.

Raising a child with autism or another disability often imposes even more isolation upon parents. In addition to the joys and problems that parents of typical kids face, we have a whole other set of hurdles (and, yes, a whole other set of joys as well). Yes, we get to experience the unique point of view that our special needs kids bring to life and we get the amazement every day of seeing what our beautiful autistic kids are capable of. I wouldn’t change the neurodiverse makeup of my family even if I could.

But we also face great challenges. We have to decide how best to help our children with their extra struggles in the face of confusing and conflicting information. We have to learn to advocate for our children, something that isn’t always easy, and is often extremely difficult. We have to help them navigate the social difficulties of the world, even if doing so is hard for us ourselves. Often we end up losing friends and family members because they don’t understand what we are going through, because our stresses are too much for them, because they want us to fix our children when all we want to do is accept and teach them. We lose the ability to socialize on the school playground because we have to keep track of our kids to keep them from “eloping” or having problems with other kids because of social difficulties. Some of us can’t leave our children alone ever, even in our own homes, and still count on them remaining safe. Most of us worry about making sure not only that we safely usher our kids to adulthood, but that we are prepared to keep them safe and cared for once they are adults and even once we are gone.

We aren’t underestimating our kids. We aren’t feeling sorry for ourselves. We believe in our children’s genius and their good and their capacity to learn and contribute and be happy. We are hoping for the best, but preparing for the worst. When you have a child, when you are a parent, that is what you do.

I’m not saying it is harder for us than it is for our kids. And I am not saying that people should pay attention to our needs more than those of autistic children and adults, but I am saying that our road is valid and important as well. I am saying that watching your child struggle in the way that autistic children do can break your heart. I am saying that parenting autistic children is hard.

This is not to say that I wish Jack—or any of my children—were different, were typical. This is not to say that I do not accept my child exactly as he is. This is not saying that I want pity or kudos for my parenting. This is only to say that parenting is sometimes hard.

Just as it helps parents of typical kids to hear that they are not alone, the same goes double for parents of autistic kids. When a struggling parent hears, “Yes. It’s hard,” “You’re not alone,” “This is what my family tried,” “It gets easier”? That can be life-saving.

I know a lot of parents of autistic kids and a lot of them feel like they can’t say publicly that it is hard to raise their children. They feel that if they break down and say that they wish they could have one easy day that they will be accused of not truly accepting and loving their own kids. Valid or not, they feel that they are criticized and judged whenever they say something negative about raising their children.

I know that there are are parents who don’t accept their children’s autism. I know that there are parents who want to “fix,” who want to cure. I know there are parents who do not speak respectfully about their children. However, most of the parents I know would fight lions with their bare hands for their children—exactly as they are. I know many, many parents who do accept their children as autistic—really, truly do—but who sometimes have days when they just can’t hack it. They know they will be able to pull it together tomorrow, but they need someone to tell them, “It’s okay. Yes, it’s hard. You’re not alone. You can do this.”

I believe that it is vital to hear autistic voices. I know that the number one thing that brought me to my place of acceptance and embrace of Jack and his autism soon after I first started learning about the spectrum was reading things written by autistic adults. Without question, I believe that their voices are the ones that we should follow. I know that just as you cannot know what it is like to parent an autistic child unless you parent an autistic child, you also cannot know what it is like to be autistic unless you are autistic.

Likewise, none of us can truly know anyone else’s experience. Your experience growing up autistic is not the same as my experience growing up autistic and neither of us had the same experience that Jack has growing up autistic. But we can all learn from each other, as long as we are willing to listen. I believe that conflict drives conversations forward and that dissenting opinions make everybody think harder.

But most parents really know their kids. And most parents really try hard. And most parents love and embrace their children for who they are. And even if everyone doesn’t, we can’t assume that just because someone says it is hard to parent their child that it means that they don’t accept everything about him. And just as it is vital to respect and amplify autistic voices, it is vital to let parents have hard days without judging them.

I know that autistic adults often feel disrespected by parents. I understand that, because I hear some things spoken by parents that bother me terribly (and vice versa), but many of us want nothing more than to respect both parents and autistic individuals. Sometimes we have to take a chance and lead with respect in hopes that we will be met with the same.

I have three beautiful children. They are amazing gifts to me. Some days, however, I want to sell them all to the highest bidder. When I write about feeling that way, I hope that I do it with humor and respect, and I also hope that some other parent out there reads it and is stronger for knowing that she is not alone.

Quinn, Sam, and Jack They are everything to me. But sometimes “everything” is overwhelming.

*****

I tell my kids all the time to “lead by example.” Head over to White Knuckle Parenting to find out how I actually led my kids by example last weekend.

*****

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Autism, parenting and feeling judged

I saw a woman at the gym the other day that I really wanted to avoid.

I used to see her a lot when Matthew was small. It seemed she was always there when he was bolting away from me at the grocery store, the swimming pool, the park. She watched me as I tackled Matthew before he wandered into the street, and while I tried to defuse a big bad meltdown. She was always sitting right behind us in church while Matthew flapped and tapped and giggled. Her pale blue eyes followed us everywhere and her frown was constant.

I wove my way around the exercise bikes and ducked behind the magazine rack to avoid the woman, and then ran smack into her in front of the drinking fountain. She was wearing that frown that I remembered well, and her eyes bored into me in such a way that I couldn’t pretend to avert her gaze.

“You look familiar,” she said, cocking her head. No kidding I look familiar. “Did our kids go to school together or something?”

“Maybe,” I countered innocently, “I think we may have seen each other at the pool.”

“Of course!” she said smiling, her frown softening ever so slightly.  ”You had that adorable boy. I remember he had…issues.”

I laughed self consciously and explained that Matthew had autism and that some years had been more challenging than others. I told her that he was 26 now, living and working in this great community for people with disabilities near Santa Cruz called Camphill California.

“I’ll never forget the day he climbed to the top of the batting cage during a little league game,” she said, shuddering, ” he was teetering around and you climbed up like it was nothing and carried him down.”

We burst out laughing and went on to talk about how her children were doing, the ones I never got to know because I was so sure their mother was evil. What a waste! Here was this really nice and compassionate woman who I assumed was judging me when in reality she was just curious. And concerned. Even now when she was laughing with me she was frowning. She was a frowner, not a judger! And who knew why she was a frowner? She may have been coping with “issues” of her own.

As we parted ways, I thought about all of the other people over the years that I had judged–and avoided– because I assumed they were judging me.

I thought back to the day I climbed to the top of the batting cage to retrieve Matthew. And to the day I ran into the surf in Carmel fully clothed to pull him from the surf. And to the day I sprinted down my street in red high heels and a black cocktail dress as Matthew rolled away precariously on a skateboard. We were stare-worthy in those days!

If you are an autism parent, you know what I am talking about. It’s not easy to be on stage during tense moments like these. Still, the next time you think some one is judging you, try taking a step back.

They might actually be admiring you.

***

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

***

The Marin and North Bay Autism Lecture Series starts Sept. 19. (more about that soon) but CLICK HERE to learn more and register.

The Morgan Autism Center Conference is coming soon, too. CLICK HERE to learn more.

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shooting stars

*

Today is Color Day at Brooke’s camp.

There will be games and contests. Competition. Camaraderie. Team spirit.

She will not be there.

Green – she was going to be on the green team.

She won’t be.

She will, as per her ardent request (more of a desperate plea, really) have color day at home.

I’m told there will be a tug of war. There will be hands-in for team cheers. Luau has suggested a sponge race.

I’m guessing that her dolls will participate. There will be no people here other than Brooke, Katie and Daddy.

~

I knew it was where we were headed at bedtime on Wednesday night when she first brought it up. And then couldn’t let it go. Even as I told her that we’d talk to Miss C about it the next day, I already knew.

I tried everything.

I told her she could take breaks. It didn’t matter. I told her that she didn’t need to participate in any events that were overwhelming. No, not in those words. It didn’t matter. I told her lots of things. Had lots of creative ideas about how to make it work. They didn’t matter.

She wanted out. I could see it on her face. The Fear. The Pain. The Too God Damned Much.

She asked me again as I kissed her goodnight, “You will call Ms C to tell her that I will be color daying at home on Friday?”

It was the tears that did me in. When she  came into my room an hour after bedtime, tears streaming down her face, I knew I’d be making that call.

If it were the school year, it would be different. If it were a different kind of event, it would be different. It’s color day. At camp. There’s not nearly enough to be gained. It just doesn’t matter.

Does it?

There are so few absolutes on this parenting journey, and even fewer on the autism path. Unquestionably right answers are as few and far between as shooting stars.

I want to respect my kid. I want to push my kid. I want to teach her that she can handle more than she thinks she can.

I want her to feel safe.

I want to teach her to try. I don’t want her to become isolated. I want her to see what’s possible. I want to teach her to communicate what she’s feeling.

And when she does, I want her to know we’re listening. 

~

Yesterday, with Ms C’s help, she wrote her note ‘home’ to a dear friend of the family with whom we’ve struck up a correspondence via e-mail. This was what she wrote:

Dear Roxy,

Big Joe is the guy that came to mi fiesta. In camp today I had a bouncy casa. Do you know Spanish? What was your favorite part of camp? Do you like grunting? I felt happy when my mama told Miss C that I won’t be at camp for color day. For pretend at my house on color day vacation my friends and I are gonna go away to Disney world in a plane. Pooh will call Eeyore Yogurtyore.

XOXOXOXOXOOXOXOXOXOXOX,

Brooke

There are so few absolutes on this parenting journey, but sometimes, the gut call is clear.

~

Today is Color Day at Brooke’s camp.

She will not be there.

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Splish

I have all kinds of things that I’ve been mulling and I want to write about, but until I get the chance—seriously, will someone tell these kids to give me five damn minutes to myself?—I will give you this piece of photography advice:

Splashparks are the best place in the world to take photographs.


Oh, wait. That was when everything was turned off because of the thunderstorm. Yes, the sky is blue. No, I don’t get it either. Shortly thereafter the water turned on. It was all kinds of super fun after that. I wanted to share, like, 20 photos with you, but I managed to pare it down. My kids are cute. Also, Sam and Jack look EXACTLY alike.




Three in one shot! That NEVER happens!
If *I* can get these fun shots, imagine what someone who actually knows what to do with a camera could get.

*****

Also, do you remember back at Jack’s hockey tournament when he choked on all that bacon? I finally got around to taking the first aid class I swore I would take. It was not only informative, but all kinds of fun. I wrote about it over at White Knuckle Parenting. Check it out!

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Dysthymia

Hey, I learned a new word last week! It is “dysthymia,” which is chronic low-level depression. And guess what, kids?  I haz it! Who knew? I’ve been calling it ennui.

This, in and of itself, is not surprising. I am well aware of my status as a depressed person. Being handed it as a diagnosis wasn’t particular awesome though. That particular diagnosis was part of a larger package, which I’ll go into another time.

For now, I’m swinging up from bottoming out. While where I am is not the most awesome place, it is better than where I was yesterday. Who knows what tomorrow will bring.

In other news, I’m looking for a therapist. If anyone knows of the best ever therapist in the Silver Spring/Wheaton area and tells me his or her name, I’ll give you a free hug.

*****

Until then, here is what I’ve learned from hosting a bajillion kids’ birthday parties in my time: Birthday Party Hosting 101 at White Knuckle Parenting.

*****

Also, my Not Even Wrong post was chosen as a Voice of the Year selection for BlogHer ’12. I’m not one of those who are reading at the conference, but I am so honored to be among the phenomenal writers who are featured. Check out the list on the BlogHer website.

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I’m Having Trouble Working From Home

Hi again! I’ve been having trouble getting stuff done, what with these kids all up in my business all day every day. It’s a problem. Not surprisingly, this is what I wrote about for White Knuckle Parenting—Working While Parenting.

I’m still working on my offline project, which is of no interest to you, but it is keeping me from writing during my infrequent time when I’m not taking care of my kids. I plan to be done with it this weekend, so I’ll be back happily typing away before too long!

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This Is Getting Absurd (Subtitle: That Poor Blanket)

Sam is still at camp. Which is good. It was weird to not have him here today. We didn’t have anyone to boss us around.

We went to the zoo today with my friend Heather and her kids. We all piled into my car and headed out this morning. About 5 minutes before we got to the zoo, Jack started moaning and saying he was carsick. I managed to pull over and was opening the door so he could get out, when he got carsick all over the car.

I’m just glad we didn’t have a domino effect with Heather’s kids.

Fortunately Jack had brought his lovey blanket with him, so I used it to clean up the car and then got back behind the wheel and we kept on our way. It was a bad day to be Jack’s favorite blanket.

“I’m glad we took your car,” said Heather. (It was also a bad day to be my car.)

Things got better from there. We had a good time.

We got to see an anaconda get a shower…


We watched Algernon taunt a pitviper…
We made sure to feed Jack a milky snack before stuffing him back in the car for the ride home…
And when we arrived back at the car, Jack’s soiled blanket was still where we left it (thank God)…
Then back home to the pool…*
Altogether a pretty good day. (Unless you were the blanket.)

* Photo actually from last week, but the same thing happened today.

*****

Hey, guess what? White Knuckle Parenting is back for a couple of weeks! Yay! I wrote about how things have degenerated at my house since school let out. My kids have turned into the Bickersons.

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