Wednesday, February 29, 2012

Minorities, Late Autism Diagnosis, & IEP Meetings...












(ORIGINALLY WRITTEN & PUBLISHED ON FEBRUARY 29, 2012)



I read with great interest today's big autism news story, "Study: Autism Detected Later In Minority Childrenand it made me very very sad.   

I encourage you to read the whole article from the cbsnews.com site HERE but if you're too lazy here's the major take aways from the article...


  • "Autism should be diagnosed as early as possible, but minority children tend to be diagnosed later than white children. New research is beginning to try to uncover why - and to raise awareness of the warning signs so more parents know they can seek help even for a toddler..." 

  • "Even when diagnosed in toddlerhood, minority youngsters have more severe developmental delays than their white counterparts..."

  • "Cultural differences in how parents view developmental milestones and how they interact with doctors may play a role..."


  • "Tots tend to point before they talk, but pointing is rude in some cultures and may not be missed by a new parent.... Or maybe the mom's worried that her son isn't talking yet but the family matriarch, her grandmother, says don't worry - Cousin Harry spoke late, too, and he's fine. Or maybe the pediatrician dismissed the parents' concern, and they were taught not to question doctors..."


  • "Studies show that white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children, University of Pennsylvania autism expert David Mandell said, who led much of that work. Socioeconomics can play a role, if minority families have less access to health care or less education. Mandell found in one of his studies that black children with autism were more likely than whites to get the wrong diagnosis during their first visit with a specialist...."



Ok, now back to me.  Autism Daddy & family live in a pretty big city with a pretty diverse population.  There's a lot of immigrants ("off the boat") who live in my city, and a lot of second generation Americans.  There's a lot of Irish, Italian, Latin American, Jamaican, African, etc.  I live in a real rainbow of a city.  And I love that about it most days.


Financially the population runs the gamut too...some mid-middle class, some low middle class, some out & out poor. 


And while this article was about minorities getting a late autism diagnosis, it made me think back to something that's been gnawing at me for years. 


So when I go to my IEP meetings at my city's Board of Ed headquarters every year and I see the things my school district tries to pull over on me & my wife it blows my mind.  The wife and I are a couple of white English speaking college graduates.  And my son has a slam dunk case of severe autism. 


But the incompetence of my school district never ceases to amaze me.  And the bureaucratic red tape & nonsense is flabbergasting.  And if you are not extremely careful your kid may be left out in the cold.  It's a combination of they are intentionally trying to screw us to save money along with being undermanned, understaffed and incompetent.










We were victims of this.  It happened to us this past September.  Our son slipped through the cracks and had no school placement for the first 2 weeks of the school year.  And it took us "lawyering up" (and spending over $1000) and it took alot of advocating from me & the wife to set things right.  I had to take quite a few days off from work back in Sept for school tours & lawyer meetings.


What does this have to do with today's report?  Well the report is about minority kids getting diagnosed later, but how is the quality of their services once they are diagnosed?


We've come out of IEP meetings, me, the wife, our team of therapists and advocates, and more than once I've seen a Latina mom waiting in the waiting room with her autistic child waiting for her IEP meeting.  And my HEART BREAKS. 


This woman doesn't speak English very well.  The school board probably brings in a member of the board of Ed to act as a translator.  She has no "team" with her.  She's probably there on her lunch hour or had to take the morning off from work.  She couldn't get a sitter so she dragged her poor kid to the meeting. 


If they tried to screw us, how is this woman gonna get a fair shake?  Can she trust the translator?  And how many are out there like that in my city alone?  


When Kyle was out of school those 2 weeks in September he had a special ed teacher come to the house for an hour a day.  And she told us HORROR STORIES about kids from our city who have slipped thru the cracks, who for one reason or another haven't been placed in a school for YEARS.  Some with autism, some with other disabilities, but almost all from poor minority families who just believe what they are told and accept what they are given.  And these kids have been receiving weak at home services.


So if you go by the article, at least where I live, if you are a minority AND you don't speak English that well you are ROYALLY SCREWED.  


Your kid may get diagnosed late and then when he does get a diagnosis you have to expect to get screwed by the board of ed at every turn.


Maybe this only happens in my city?  Or in big cities?  Or maybe it happens more that you even know, but you just don't see it in your city because your IEP meetings go so well.  You are successful advocating for your child.


But what about that single mom who has the IEP meeting after you?


As hard as it is to have a kid with autism, and how awful my big city school district has been with us over the years, this is one case where I'm glad I'm a white male that speaks English and I'm glad that I've got a flexible job that let's me take time off for emergencies (like IEP mtgs) and I'm glad that I have enough $$ to hire a lawyer to fight the system when necessary.


That's all I got.  Whataya think? 


:-)

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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!







Thursday, February 23, 2012

Autism vs Parkinson's -- Why are drugs considered bad for one & good for the other??






(originally written & published on February 23, 2012)


I have a soon to be 9 year old son with severe / classic non-verbal autism. I've written on here countless times that he has the receptive language & expressive language of about an 18 month old and he has been for years.

And a few days ago I painfully recalled what my son used to be able to do / how his brain worked when he had mild PDD-NOS before his huge, unusual, late, slow regression. (you can read that by clicking HERE)

And now that you know that you can better understand my controversial posts a few weeks back about those who say they wouldn't change one thing about their asd kids if they could.  (you can read that HERE & the follow-up post  HERE)

One thing that came out many of the comments is that why would you want to alter your autistic kid's beautiful mind? And why would you want to change his brain?  His brain just works differently than most of ours. Not worse, just different.  And a lot of this comes up again BIG TIME when I talk about the fact that we've tried certain prescription medications on Mr. Kyle.   People write that meds are dangerous, meds have horrible side effects, pharmaceutical companies are evil, etc
I'm really curious if the people that feel this way are the people who's kids they feel were born with autism. Because if you saw your kid have a lot of skills, if you saw your kid speaking, and then saw all of that regress and fall away, regardless if you feel your child's autism was caused by something (vaccines, etc) or he just had late onset autism,  if you saw what your kid was capable of before it slipped away,  wouldn't you want to alter his mind to get it back?

I'm not writing this today because I'm looking to write another controversial post. I swear. 

Monday, February 20, 2012

The Hardest Thing To Write About -- my son's initial autism diagnosis &late regression









my son's regression makes me think of deniro's character in this movie...
i cant watch this movie anymore...


(originally written & published on February 20, 2012)



Ok, so this is probably going to be the hardest blog post for me to write so far.  And I have no idea where it's gonna lead so bear with me if I go off on tangents. I'm gonna be remembering things that I haven't thought about in awhile so it could get messy.

But here goes...

I've written in a few previous posts about Kyle's mysterious late regression.   If you haven't read about it before I STRONGLY RECOMMEND that you do before continuing this post.   You can read it HERE.

We will wait for you...

:-)

Ok, did you read it?  Great welcome back and away we go...

Even though I covered a lot in that post many people have asked more about it. They want more details. They want to know if we know what caused it. Was there any early warning signs?

People on this blog also always want to know the details of Kyle's diagnosis. It seems like you can't have an autism blog without at least one post (usually the first post) detailing the story of your kid's diagnosis and how you dealt with it, etc.

The story of Kyle's diagnosis isn't really
that interesting. And the story of his late regression is very painful.  And i never wanted my page or blog to dive into all that.  I've spent years learning to deal with it. So I don't want to relive it too often.
But for the good of all of you, I'll get into it a little bit more. But I'll say up front that I still have NO F$&KING IDEA what caused his late HUGE regression.

Ok, here goes...

We have a good friend who has 2 sons with autism and she was dropping subtle hints about Kyle maybe being on the spectrum as early as 12 months. Flapping, walking on his toes, etc.   We thought she was CRAZY.











I covered it in the other post but basically Kyle was diagnosed pretty early... at about 18 months with mild PDD-NOS.  We got into the Early Intervention program.  And we were able to get a plethora of services.

At least in NY when you are in EI and CPSE you can get alot of services. Then when you get to be 1st grade age you enter the CSE system and they start tightening their purse strings.

But anyway between the ages of 18 months and 36 months Kyle was getting a TON of services!  Our house was a revolving door of speech therapists, OT's, PT's and ABA therapists. We added it all up and on most weeks he worked more and worked harder than me!  35-40 hours per week.

And we had these AMAZING women in our lives. And Kyle was THRIVING!  Within weeks of showing up at our house his attention span had grown by leaps & bounds.
The first speech session she couldn't get him to sit still for more that 2 minutes. Within a few months he would sit for the ENTIRE 45 minute session. And he knew the routine of which games went with what book and what song she would sing when she brought out that toy. Thinking back it was AMAZING!

Some family members would say "he's working too hard.  you have to give him time to be a kid" and we would say "everyone says the more the better, the earlier the better"
As I said in the other post he was learning his numbers, letters, and had  an amazing memory. You would show him which states were which on a big US map like 5 times and he had it memorized.

His point was good. His receptive language was good. We would carry blocks and books with us everywhere and would sit on the floor anywhere we went and imitate one of his therapy sessions and he would LOVE it. He enjoyed learning and he liked to show off his knowledge.

That was key thinking back.  He enjoyed learning.  And as parents that is HUGE.  Because if your kid shows a glimmer of interest in learning it makes it SO much easier to "work" with him on your own.

When you get something back from your kid when you use a particular teaching method (ABA, Pecs, etc), even if it's just a glimmer of something, an iota of something it makes you want to work with him on your own outside of the "school day".

We haven't seen that from Kyle in a LONG time. He doesn't enjoy learning anymore. With mom & dad he gets stressed when you ask him the simplest question like "point to nose"

Anyway, back to how great he was doing...

He was doing so well and was so good and calm behaviorally that I remember thinking and maybe even saying to the wife that besides the fact that he can't talk and a few stims, he's pretty much got it going on. I had visions of grandeur of  him maybe going to an integrated kindergarten in a few years.

I just now remembered that even his stims were different and more high functioning(?)  One of his biggest stims when he was younger was spinning EVERYTHING.  You know the way you twirl a coin. Kyle could do that with anything....which means his fine motor was much better. I forgot about that.

And he was using a spoon and fork MUCH better back then. I forgot about that...
:-(
(see this is why I don't write about this)

Anyway he was thriving between 18 months and 36 months and thinking back me & the wife felt like we were doing everything right.  We were "hot shit". We advocated for our kid and got him what he needed and he was progressing nicely.  And maybe we were a wee but judgmental in our minds.

We would see other ASD kids out always with headphones on watching dvds or listening to music and zoning out and we would frown at each other and say "not our kid".

We would see other ASD kids who didn't sit at the table for meals at big house parties and were left on their own in the other room to watch tv. And we would say "we want Kyle to interact with everyone" and there Kyle would sit (strapped in most of the time) and he would eat with the adults and we would show off his skills. "point to 40". "point to Florida" and he was an angel.

This is why I'm so ok with people on my page & blog thinking their way is the best way. We were there too. Our way was the best way too...until it wasn't anymore...

Slowly between the ages of 3 & 5 it slowly all went away.

His age 3-4 school year (what would that be pre-pre school?) we fought to get him into this amazing ABA school. And it was a great school and the staff were amazing. And the parent training sessions were helpful but slowly our Kyle was slipping away.
We always say that he was getting burnt out on ABA.  But now thinking back i don't think at all that the ABA burn out caused his regression.  Maybe he regressed and was upset because he couldn't do it anymore?  Who knows?

All we know is he  was miserable there. He would cry a lot. By January of that school year he was so upset all the time and i guess upsetting the other children that they had taken him out of the classroom setting and he was getting his ABA trials one on one in one of the basement offices.

And that seemed ridiculous so we left that school with our tail between our legs and went to more of a TEACHH school for his age 4-5 year...

But it didn't matter. The HUGE SLOW regression was happening. And by the time he was 4 1/2-5 years old our good receptive language, pre-speaker, who knew all his numbers, shapes, colors, and states who could use a fork and sit for a meal or sit on the living room floor with me and play with puzzles for 15+ minutes straight was gone...

And in his place we had our severely classically autistic son that can barely sit still, climbs on everything, plays with his saliva, has a low attention span, and hasn't made any significant forward progress in years 

Basically the Kyle I write about and you all know and love today.  :-)

And that's it. We have no explanation. Nobody does.

In the past few years we've done all the autism rights of passage. For one reason or another we've had MRI/ Catscans done, we did a 24 hour EEG, etc and as sick as it sounds I have rooted for something to show up on these tests. Something to give us an explanation or a direction to go in. Maybe he's having silent seizures?  Maybe that caused part of the regression. And there's meds that help with that. But all tests turned up normal...

So I've given up looking for an explanation. What's the point?  How will that help me/him now?  And I've said in the other post that maybe he had CDD on top of his autism. Maybe he did but how will that knowledge help us now. There's not a different treatment method for CDD. It's the same deal with less retention and progress. Yep, that's what we got...

And as for blame ...I don't blame ABA. That wouldn't have caused his fine motor regression. I don't really in my heart blame the diet or any of the biomedical things we tried. I don't blame myself or my wife.

For the time being we just have to chalk it up to "SHIT HAPPENS" and stop thinking about all the things he used to do and stop thinking about the type of kid he was heading towards. And just love like crazy the crazy severely autistic kid we currently have.

It took me years to put away the things he used to do... But I have until this F*&KING blog post!

Ive put in far back in my mind.   Now i say it's nice to know what his brain is capable of and maybe it's still all in there.  And maybe some day Kyle will have a love for learning again and have his Carly Fleischmann moment but for now we're just living in the here and now and trying to make our kid as happy as possible.

That's all i got  The end. Whew. Thanks for drudging up all those good memories ...NOT!

:-(

I think I need to take an extra antidepressant tonight.





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Sunday, February 19, 2012

Why Be Normal? 13 Things That Are Untypical About Our Lives On Autism Avenue (w/ pics!)












(originally written & published on February 19, 2012)


We have an 8 year old son with severe/ classic non-verbal autism. He is our only child.  So we have untypical lives.  Here are 13 things that are normal/typical for us in our life on Autism Avenue, but not to most others.  Some may be things that parents of babies of toddlers find familiar, but not parents of neuro-typical 8 year old boys...

Do I really feel and live the "why be normal?" mantra. If you've been reading this page long enough you'll know that's not always the way I feel.  I'd love a typical/ normal lifestyle. But this is the hand we've been dealt so i say let's make the best of it and find humor in the "not normal", right?  If you can't beat them, join them...  :-)

So here is is our story and I'm sticking to it...

1) We can't leave hand soap (or any soap) out in our bathrooms because Kyle like to eat it. He's really tested the concept of "non-toxic" on product labels!
When guests come over we have to instruct them to unhook the child proof latch below the bathroom sink and grab the soap from down there... and replace it and lock it up again, don't forget! :-). We went thru a similar phase where we had to hide the toilet paper too cuz he liked to eat it or unravel it, but that phase has subsided.... for now

2) We normally change Kyles sheets every 2 weeks. And somehow every morning after we change the sheets Kyle has an accident & wets the bed and we have to re change the sheets we just changed yesterday...Oh and it's the usually the only time he has an overnight pee accident. Twice a month, right after the fresh sheets were put on.

3) Up until a few months ago, we always had a big supply of size 5T Pull-Ups on hand.  And a big sale would send this daddy into a tizzy!









4) We always have 10 boxes of microwave popcorn in Kyles cabinet in the kitchen. When there's a 10 for $10 sale we get very excited!  And popcorn can be served as a supplement to breakfast, lunch or dinner.


Basically popcorn is an anytime food in this house.

5) We always have lots of baby food bananas on hand. Does Kyle love baby food bananas?  Not really.... But it's how he takes his pills.
We can put a pill on a spoon with some baby food bananas and he will wolf it right down.

6) Kyle still sometimes needs to be strapped in to his seat when he eats.  He's got some feeding issues and has had a history of LOSING quite a bit of weight. So sometimes it has to be done.

7) We've got a DVR full of Sesame Street, Dora the Explorer, and Jacks Big Music Show.  Some are Kyles favorite episodes that we've saved from as far back as 2004. And I totally see Kyle still watching these when he's 34 years old...









8) He's got a bookshelf full of the same toddler books.


Kyle's been reading his same favorite books for YEARS and it's very hard to get a new favorite into the mix. But he always rips and destroys his favs for his birthday or Christmas he'll usually receive a gift from someone of new copies of his old favorites....

9) Kyle has an autism service dog. NOTHING typical about that!  :-)

You can read more about "Princess Paula" HERE

10) We still have child gates on rooms we don't want Kyle in,

child locks on cabinets we don't want him in, and most amazingly Kyle has NEVER been in our basement!  Basement is unfinished and has WAY too many dangerous things down there.  Basement door is ALWAYS locked...

11) Kyle likes to sit on the bathroom sink and drink the hot water from the sink. 

I would say that 60% of his liquid intake for the day comes this way. A few times a year in our downstairs bathroom he'll sit a certain way and pull the main pipe out of the wall and they'll be water all over the floor.  Autism Daddy is not the handiest daddy so I'll just duct tape the crap out of it...  :-)

12) Kyle has a trampoline and a swing inside the house, in his playroom. 

We have quasi gym flooring in there as well.

Having a meltdown?  Go work it out by bouncing on a ball while bouncing on the treadmill...


13) Kyle isn't too cool to want to be picked up and held. In fact he goes thru phases when he wants me to pick him up all the time.  He can be very huggy/kissy, probably more than your typical 8 year old.  But I'm not sure how I'll be able to continue to pick him up when he's a teenager and weighs ?? pounds.  I guess I should give up running and move towards weight training....


Those are the 13 that popped in my head right away on a Sunday morning at 5:45am while he was eating popcorn for breakfast and drinking water out of the sink.  But there are tons more, so maybe I'll update this list periodically or come up with a new one from time to time....

What are your things that are normal for your asd household that would be considered untypical to most?





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Saturday, February 18, 2012

8 Ways That The Grass Is Greener On My Side Of Autism Avenue Right Now....


When I started my Autism Daddy Facebook Page & blog it was a place to rant and vent and complain about my son's autism. I've said a MILLION times on here that I LOVE my son but I'm not a huge fan of his autism.

And for years I had a huge case of "the grass is always greener on the other side" syndrome (I wrote about that HERE).  I would always in my mind be comparing my life and my kids struggles to my friends with typical kids and would get depressed and have a huge case of "why me?"

And when I hung out with our other autism parent friends I would look at their asd kids and would in my mind be comparing them to my son and seeing how far behind Kyle was. Some of their kids were severe but Kyle was severely severe and I would get depressed and have a huge case of "what are we doing wrong"

But I have to admit that since having this page & blog and reading about alot of your struggles I realize how lucky we are right now.  This is a product of reading some of your horror stories about your asd kids while my son is going thru a GREAT stretch behaviorally right now.

I never intended for me to get soft on you all :-), but I realize now how good the wife and I have it right now. And I don't mean to compare some of your misfortune and pit it against what we've got going on...but hey it's human nature. And now that I've got 4700+ followers I hear alot of stories and read about alot of your kids and more and more lately I'm coming out of it thinking "wow, maybe the grass is greener on my side!"

Don't get me wrong. I know Kyle will go thru a bad stretch again soon and I'll have plenty to rant and complain about.  And I know that if I look LONG TERM things get alot more murky. Kyle will need constant care and will be dependent on others for the rest of his life (even after the wife and I are long gone) and that's something that if I think about alot it will keep me up at night...

But for right now, at this period we got it pretty good compared to alot of the other asd parents who read this page... 

So here's 8 ways that IN MY MIND maybe the grass is greener on our side right now...

1) My commute to work is only about 40 minutes...I get to drive to work and work in the GREATEST CITY IN THE WORLD, NYC and  my job / bosses are very flexible about my "home situation" and are ok with me having to "work from home" when necessary so I can go to a mtg at Kyles school or give the wife a break.

2) My kid is affectionate... Right now he's overly affectionate with me and doesn't give the wife much to work with, but it's in there.  He can be very huggy/ kissy...

3) My kid is potty trained right now...  He lost it twice before and he's been having alot of accidents lately, but he is somewhat trained and is malleable and amenable to being potty trained...(I write about our potty training method HERE)  And even when he was in pull ups he is not and never has been a "play with his poop" kid.  We talk about fecal smearing alot on my FB page cuz you guys talk about it...but my guy has never done this...so far....

4) My kid sleeps pretty well....  Lately he's in a stretch where he's been sleeping from about 8:30pm - 6:00am which means the wife and I can have some alone time which most nights means eating dinner on the couch in front of the tv until she passes out...and when he does go thru a stretch where he wakes up in the middle of the night the worst it is is like twice a week, and he's happy while he's awake...

5) My kid is not a runner.... I mean we still hold his hand tightly when we are out in public and we bring his autism service dog with us to alot of places, but lately Kyle is not likely to bolt off or run away

6) Kyle's been very good behaviorally lately...  A little less manic add/ADHD...  At home he can tolerate the tv being off and playing in his room or in a little "nook" in the dining room or kitchen for 10-15 minutes at a time.  He is not an overly destructive kid right now.  And out of the house he's been ALOT better going shopping, running errands.  This is one thing we know can change on a dime, especially after last summer's "Summer Of Rage" so we are thrilled right now....

7)We have some respite...  Because Kyle sleeps well and is affectionate and is pretty good behaviorally he is somewhat easy to baby sit for. And if you've been reading this page long enough you'll know that the wife and I take breaks and get sitters often. Going out and recharging our batteries is VITALLY important to the both of us. (I wrote about that HERE)  And we are extremely lucky & fortunate that we have the people in our lives who are willing to watch Kyle and that Kyle is "watchable".  I'm really afraid of that not being the case when he's older.... but for now we will use it to our advantage...

8) The wife and I have each other. And we are both "all in" and committed to each other, and to our marriage, and to raising our only child.

Those are the 8 that came to me off the top of my head.  There are definitely more...

Don't get me wrong we still have major issues and Kyle is still severely autistic.  His receptive and expressive language are at an 18 month level and have been for YEARS....but he's very happy right now which makes mom & dads lives alot brighter.  I always say since Kyle is our only child the wife and I live & die by his moods and his behaviors. When he's going thru a good stretch we all are and when he's a terror we all at each other throats...

But for right now, even though he's non-verbal, even though he hasn't made any significant progress in a LONG time, even though he still holds his breath ALL THE TIME, even though he has to be fed like a baby cuz he barely eats and is still at risk of losing weight, he is happy so we are happy and in a good place right now...

So right now the grass on our lawn on Autism Avenue is green and thick and luscious.  Let's hope it stays that way for a LONG time.

THE END...
.

Sunday, February 12, 2012

Autism Parents & The Guilt Factor written by Jene Aviram

 AUTISM DADDY'S COMMENTARY:  I've been living this autism lifestyle for almost 7 years now and I still succumb to GUILT on a weekly basis.  Not guilt over me or the wife being the cause of my son Kyle's autism... but more guilt about not doing MORE.  If you read this blog or my Autism Daddy Facebook Page often enough you'll see "guilt" creep in to my writing often.


I was thinking about it and I googled "autism and guilt" and wouldn't you know it, I found another great article about it written by Jene Aviram.  I've reposted a few of Jene's articles on my blog (here) & on my FB page (here & here).  She has a TON of great articles about autism from a parent's point of view and from my experience her articles do not seem to be very widely circulated, at least not within the autism blogs and fb pages that I'm reading.  So from time to time I'm going to repost her stuff cuz I think it's THAT good and deserves a bigger audience so please read, enjoy, comment and share. 


Ok, so without further ado here's...




"The Guilt Factor" written by Jene Aviram of National Learning Concepts




When a child is diagnosed with autism, parents develop a new vocabulary. Conversations contain words like ABA, receptive and expressive language, discrete trial training, eye contact, floor time and biomedical approaches. Parents share their joys, their fears, their strategies and their dreams. In fact, almost everything is easily discussed except one thing – THE GUILT FACTOR.


While it’s proven time and again that parents are NOT responsible for their child’s autism, many parents have this nagging little feeling somewhere deep inside that they are to blame. If they don’t feel they caused the autism, they typically feel that their child would be doing better and progressing faster if they just put more effort into it. One can only equate it to preparing for the Bar exam. No matter how much you study, you could always do a little more. Simple every day activities result in great emotional stress for an autism spectrum parent. It’s not long before the "guilt factor" spills over into every area of life.


HOW THE GUILT FACTOR IMPEDES YOUR LIFE


Your autism spectrum child is interested in animals. In a completely "non-typical" method of conversation, your child names all the farm animals and wants you to repeat it back to him. Again and again and again! You do so and the guilt factor sets in. "This is so inappropriate" you think to yourself. "I should take this opportunity to teach my child how to converse appropriately." But you know that if you don’t comply to your child’s wishes he’ll have a meltdown, and you’re busying making dinner, your two year old is crying because she’s hungry and your eldest needs help with her homework questions. Disheartened, you continue the banter with your child, blaming yourself for not doing a better job.


The telephone rings and it’s your friend. You’re thoroughly enjoying the conversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise. "I shouldn’t be talking to my friend. I should be teaching my child how to play with that toy" you silently berate yourself. Then your child begins to run up and down the hall and you silently reprimand yourself. "I must get off this phone. Time is precious and I should be engaging my child". Feeling discouraged, you’re torn between hanging up on your friend and redirecting your child.


When picking up your child from OT, you chat politely to the other parents. One mother mentions that her daughter has extra speech therapy. Another one talks about the social skills group she enrolled her son in. Another one declares that she just signed her child up for Karate with an aide to help him. Despair and guilt wash over you. "These parents do so much" you think to yourself. "How do they do it? Where do they find the time? I should do more. Perhaps I should have signed my child up for Karate instead of swimming." As the guilt factor sets in, you shamefully accuse yourself of being a bad parent.


It’s been a long day and you’re exhausted. You’ve been to work, dealt with tantrums, spoken to three teachers, rearranged your child’s therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities. As you plop on the couch to watch some TV, that feeling of guilt washes over you. "I shouldn’t be relaxing." You say to yourself. "I should be re-writing my child’s program. I should be researching new methods of treatment. I should be going over my child’s IEP." But your brain can’t take one more thought about autism and you guiltily sink into the couch and think "Tomorrow, I’ll tackle it tomorrow".


KEEP IT IN PERSPECTIVE 


Paradoxically, parents of autism spectrum kids are one of the most proactive groups that exist. While they commonly feel they’re not doing enough, these parents should be honored and commended. They’re able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime. Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible. The great strides that have been made in the autism community are largely due to parent driven establishment. The next time the guilt factor sets in, keep it in perspective and remember the following points.




 1. You’re not alone
You are a great parent. You are your child’s best advocate. You have a lot on your plate. Your days are often filled with a great deal of mental anguish and emotional stress. You help your child through small activities that most parents don’t even think about. You fight for services for your child. You fight for the best class placement. It can be tiring. It can be exhausting. As you look around, you often feel that other parents are doing a better job. Realize they think the same of you. The guilt factor impedes their life too. Parents of autism spectrum kids have a common bond. They understand, they empathize and they spur each other on. If you declare "My 6 year old dressed independently today" they rejoice with you, because they too appreciate every milestone, large or small.


2. Organizations
Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum. This is on a worldwide basis. A large number of autism schools have been driven by parents. Special education distributors and manufacturers often have parents at the helm. Researchers and educators are often parents. Increased services in schools and communities are the result of parent driven efforts. Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum. You might not be part of one of these establishments but you have made a difference. It’s the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.


3. Relationships
When your child is born you are instantly a parent. The role of a parent is to love, educate and support your child. You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults. When you have a child with autism, you become a teacher. The role of a teacher is to educate a child. Whether it’s a small task or a large task, teachers use every opportunity to educate a child. As a parent of a child on the spectrum it’s difficult to maintain a balance. While you want your child to learn as much as possible, you also simply want to be a parent. The next time the guilt factor sets in because you’re not teaching your child at every moment, release it immediately. Your child loves it when you’re just being a Mom or just being a Dad. While it’s perfectly fine to teach some of the time, a healthy balance leads to a healthy relationship between you and your child. Enjoy those moments with your child. Even if they aren’t typical interactions, they’re certainly fun! 


4. Acceptance
On asking adults with autism "What’s the single piece of advice you would give to parents of autism spectrum kids?" the answer is almost always a unanimous "Unconditional love and acceptance." For just a moment, view your child’s perspective. Almost every action gets corrected. Almost every behavior is modified. Method of play is considered inappropriate. Self stimulatory behavior is often halted. Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature. It can’t be easy to keep one’s self esteem intact. I certainly advocate teaching as many skills as possible to help your child function in life. However, it’s essential your child knows you believe he is perfect just the way he is. It’s simply unfortunate that others might have difficulty understanding him. Your child should intrinsically know the reason he’s learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life. The next time you feel guilty about not correcting your child’s behavior or mannerisms, remember that delighting in your child’s unique qualities is just as important as teaching appropriate actions.

The next time the Guilt Factor impedes your life, simply acknowledge its presence. You don’t feel guilty because you’re a bad parent. You feel guilty because you’re an outstanding parent. You’re a parent who loves your child dearly. You’re a parent who is so committed to helping your child learn that you feel bad taking time for yourself. Your hard work, dedication, energy and eternal giving are unbeknown to most and recognized by few. I acknowledge you and say "Well done! I know how committed you are and what it takes. You are an exceptional parent and I recognize your greatness!



Written By Jene Aviram This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com/ 
Toll free: (800) 823-3430 Main: (631) 858-0188 Fax: (631) 858-0061 sales@nlconcepts.com


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    This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

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Thursday, February 9, 2012

Things To Say To & Ways To Help An Autism Parent... :-)








(originally written & published on February 9, 2012)





I wrote a post yesterday called "10 Polite Things People Say To Autism Parents That Can Be Annoying / Frustrating..." which got a TON of feedback.  Many autism parents added their own stories of things that people say that irritate them. 

However, the stuff I wrote about was stuff that on it's own seem pretty tame & polite.  And as I said in yesterday's post...

People are just trying to be polite and show interest in your kid and have something nice to say.  Let me say straight away that I don't blame them for saying any of these.  These are just 10 things that when you hear ALL the time get to be a bit frustrating... the same way the movie stars get exhausted when they have to answer the same questions over and over when they are on a press junket...  :)

Many of the things that other autism parents commented about don't fall under the "polite but annoying when you hear it all the time" category.  Many of the things you posted fall under the "out & out rude / mean / ignorant" category.  And to me there is a HUGE difference. 

As I've said in a blog post last week (called "Where Are All These Mean People"), we rarely, if ever, come across people who are mean or rude on purpose or even by accident.

Yesterday's post was meant to be a slightly humorous way to show how even polite things when you hear them constantly can become a wee bit irritating. 

And some non-autism parents pointed out that we asd parents can be hard to please. Many of my non-autism parent readers wanted to know in all honesty... 

--Would  you feel better when people just do not say anything? If not, what would you like to hear?


--What would you like people to say to you? What are the encouraging words that you want to hear?

And several readers wrote back with some ideas like...

--How about whenever you need a sitter call me lol!
--I would love it if people would just ask regular questions like "how is school going", "is he getting along better with his brother (because they fight)?" regular questions that do not surround his disability.

And so that made me try to think about the types of things I would want to get asked... or appropriate ways to bring up sensitive topics that probably won't irritate me. :)  And I planned to sit down and write a follow-up blog post all about this.

But you know what?  I'm not the first person to write / blog about the things NOT to say to an asd parent.  And I'm not the first person to write / blog about the things TO say to an asd parent.

I did a google search on "things to say to an autism parent" and I found some AMAZING articles that say it way better than I ever could.  So I will pull out some of my fav's and add links to the original articles. 

I encourage you to read all of these articles.  There are alot of hidden gems and ideas in each of them.

So without further ado here's
"Things To Say & Ways To Help An Autism Parent Culled From The World Wide Web"

1) Stuart Duncan is a fellow autism dad blogger.  He's the big kahuna on the block of autism dad blogs.  He has a blog called Autism From A Father's Point Of View.  He wrote a post in May 2011 called "What to say and not say to a parent that has a child with Autism".  And on his list of what to say?

--You’re doing such a great job
-- I don’t know how you are able to do so much
-- Your child is progressing so well, you must be very proud
-- If I can help, just let me know.
-- I don’t know much about it but I’m willing to learn
-- I’ve read some studies, heard the news but I’d love to hear what you think


2)  Ellen Seidman writes an autism blog called Love That Max and she often writes for parents.com.  Back in July 2011 on parents.com she wrote her own list, 7 Things Not To Say To Parents Of Kids With Special Needs and took some heat in the comments section.  And a few days later she wrote a follow-up called What To Say To Parents Of Kids With Special Needs  Here's a snippet of her advice...


So what would be good to say about my son? Well, if you don’t know us and we are, for instance, hanging at a playground, this is what I would love for you to say: “Hello.” It’s the universal way of opening a conversation. It’s friendly. It’s pity-free. As reader Clementine said, “Simple hellos go a long way.” Or, if you prefer, “Wassup?”
Let’s gripe about how the playground needs a renovation. Let’s joke about how quickly kids grow out of their shoes. Let’s talk about the sort of stuff all parents talk about as they’re striking up a conversation. One commenter asked, seemingly facetiously, “What should we say: ‘What’s his/her name’ ‘How old is he/she – the standards?” Actually, the standards are much appreciated. If you think that having a typical-parent conversation is ignoring the elephant in the playroom, maybe you can reconsider your idea of elephants.
Once we’re chatting, getting more personal is cool. I’m OK with being asked “What’s his diagnosis?” or “What does he have?” (“What’s wrong with him?” is way negative and kinda rude.) Sometimes, people precede questions with “If you don’t mind my asking…” which is a nice approach since some parents don’t want to go there....
It’s different with people who already know me and Max, obviously. My friend Wendy always asks, simply, “How’s Max doing?” which leaves plenty of room to get into whatever detail I’m in the mood for. Oh, and anyone is always free to ask how I manage to stay in such great shape, though I suspect that is one question I will never hear...

3) Jean Winegardner writes an autism blog called Stimeyland.  She also sometimes writes autism articles for the Washington Times website.  In July 2011 she wrote an article for the Times about when someone said "I'm sorry" upon learning that her son has autism.  And one thoughtful commenter asked, "What might be a good thing to say?" and Jean wrote a follow up article called "What to say to parents of children with autism".  Here's a great snippet (but read the whole article cuz there's tons more great stuff)...

I think the most important thing to remember when you are talking to parents of children with autism is that they want you to understand their child. Most of us are willing to explain how autism affects our families and are happy to answer your questions. What we don't want are platitudes or assumptions.
If someone tells you his child has autism, ask how the child is doing. Ask what he is like. Remember that he is someone's very loved child.

4) On the autism blog Delightfully Different Life I found an AMAZING post called "Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving" filled with GREAT advice.  Here's ONE nugget that is EXTREMELY helpful to us asd parents that your friends/family might not think of, or do often enough...(but I IMPLORE you to read all seven!)


If you are inviting the family over, ask specifically about how you can accommodate, and try to follow the parent’s lead about the extent to which the child will be involved.  No gluten?  No problem.  Your Halloween decorations or your perfume may trigger a meltdown?  Easily fixed.  They are leaving their child with a sitter even though you’ve insisted it’s okay to bring her?  That’s fine too.
It’s much easier for us to tell people what we really need to do if they let us know that they want to know.  Otherwise, we will probably decline perfectly wonderful invitations just to avoid being an imposition on you.
For example, a child with autism might have a favorite video that can be the default setting when the socializing gets to be too much.  Kids may have certain foods that they must avoid, or certain colors that freak them out.  A child may need safety precautions that would be easy for you to take.  The family may want to be home earlier than most, so dinner could start early.  Jeannie, an adult whose only sibling, a sister, has special needs, says:  “Ask the parents if they want to also include their child to join everyone when they go out.  It is hard to find a sitter for someone who is an adult and has special needs. Including them is so nice because they already feel isolated and left out as it is.”

 5)  I found a GREAT autism blog called The I Love You Song and an AWESOME blog post from October 2011 called "10 ways to help a family living with autism".  Here's a few of them... (but please READ them all!)

3. Be present.Don't go missing. The life of a family living with autism often changes immeasurably and it can become very hard, with the demands of appointments, therapy programs and the like, to maintain friendships and even family relationships. Persist. Persist. Persist. They might not say it but the family living with autism most likely needs your support.

4. Focus on the child with autism
One of the toughest things about autism is watching your child struggle with things that are easy for typically developing kids. It's even more painful to listen to other parents celebrate their child's stellar achievements in detail. If you can, at least for a time, keep it brief and focus on the child with autism.

5. Practice random acts of kindness.
That thing when you have had a day filled with meltdowns and therapists in and out of your house, followed by a speech therapy appointment and a lovely friend drops in with something homemade to soothe all and sundry. Yeah that. It's the little things that make a big difference sometimes.

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So there you go...

Those are snippets from 5 great articles, but there are tons more!  Go google them yourselves...

And you autism moms & dads... Do you agree?  Are there any other things you'd like to be asked?  Or ways people can offer help?

We are a demanding fickle bunch, us autism parents, aren't we.  Sorry you all have to walk on eggshells around us...  but that's just the nature of the beast.  :-)  But deep down inside we appreciate the effort when someone tries to say something nice and/or supportive...  or someone offers to help. 

So PLEASE don't feel afraid to talk to us!!    :-)

the end...


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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!






Wednesday, February 8, 2012

10 "Polite" Things People Say To Autism Parents That Can Be Annoying / Frustrating....













(originally written & published on February 8, 2012)



These are 10 things that the wife and I hear often from friends and family members who are just trying to be nice.  They are just trying to be polite and show interest in your kid and have something nice to say.  Let me say straight away that I don't blame them for saying any of these.  These are just 10 things that when you hear ALL the time get to be a bit frustrating... the same way the movie stars get exhausted when they have to answer the same questions over and over when they are on a press junket...  :)

Anyway without further ado... here's MY 10 "Polite" Things People Say To Me & The Wife That Can Be Annoying / Frustrating with some of the sarcastic remarks that go thru my head when I hear them  :-)....  


1) "Hows the baby doing?"
Who had a baby?  Oh you mean my soon to be 9 year old?  He's doing fine...


2) "Even typical kids do that..."
Thanks.  Even typical kids are known to drink the chlorine water in the pool? That'll make me feel better when he has crazy diarrhea tonight. Yes, some typical toddlers may do that, but not 8 year old typical kids....but thanks for trying to make me feel better 


3) "Did you see that autism report on the news about ____"
Yes I did.  And if I didn't I probably know about it already.  And if I don't know about it, it probably won't help me anyway...
(I covered this topic a bit in a few old blog posts  that you can read HERE and HERE)












4) "Awww but he's so cute..."

Yes he is cute.  Being cute goes a long way in life.  Wait till he leaves a dollop of saliva in your pocketbook. Tell me if you think that is cute...



5) "Wow he's gotten so tall..."
I've covered this in another blog post that you can read HERE.  When your kid has made almost no discernible progress people say "wow he's gotten so big..."


6) "What do the doctors have to say?  Any suggestions?"
Uh, the doctors?  Which doctors?  I take that back.  It doesn't matter which doctors, none of them have a f&$king clue..












7) "Is he talking yet?  Any words at all?  I saw ____ 's kid and he started talking so there's always hope.."
Nope, no speech yet.  And thanks for reminding me how far behind my kid is.  I can blame you for the funk I'm gonna be in for the rest of the day.    



8) "Does he sleep well?  Well at least he sleeps well..."
Yes, for the most part he does sleep well.  And that totally makes up for the other 16 hours of the day when he's bouncing off the walls and we are playing goalie trying to keep him safe and away from the knife drawer in the kitchen..


9) "It's ok. He can put that in his mouth.  It's clean and he can't choke on that."
That's very nice of you that you are ok with my son putting your wooden figurines in his mouth.  I'm glad that they are not a choking hazard but it's not really appropriate for an 8 year old boy to be putting weird things in his mouth...but again thank you...  :-)



10) "I don't know how you guys do it...."
Do what?  Wake up in the morning, take care of our kid, get him dressed, fed, love him?  That's hat a parent is supposed to do.  We're no saints over here, trust me...
(I touched on this in a previous blog post that you can read HERE)

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That's my Top 10.  I would LOVE to hear some of yours!!

:-)
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I wrote a follow up to this post the very next day with the Things To Say & Ways To Help An Autism Parent.  You can read that here

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-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!






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