I'm betting that just about all of you know that APRIL is Autism Awareness Month.  Am I right??  We here in NJ use this month to educate and support.  I have read several other blogs concerning how frustrating it can be to staff and parents both when they come up against people in their community who know little or nothing about autism.

OK, first, let me remind us that, while we feel like experts on this subject, there was a time when we too knew nothing about autism.  And I would venture to say that we still wouldn't know anything about it, if we didn't have to.  We should not blame those who are ignorant about ASD ( unless it's your mother-in-law and she's in denial or, better yet, just insisting on being a pain in the a--).  Autism is not going to matter to others unless they see that it matters to us, and that it is worth caring about.  I think that once we are honest and accept that autism is a very hard disorder to get your mind around, then we can be more understanding, and maybe even patient when we come across those who are clueless about it (and say the stupidist things we've ever heard!).  read more »

I work as a speech tx in a public school in New Jersey.  I am in a self-contained autism class, grades 2,3 and 4, so my students are in that class, and I also have studetns on my caseload who are in other self-contained classes such as MD (multipli-disabled), LD (learning-disabled), and preschool-disabled. In the past, the staff of the autism program (there are 3 teachers and 3 speech therapists) have presented evening workshops for parents of the kids in our program (actually open to parents of kids with any disability in our district).  However, the last 3 years, we have seen a huge decrease in the # of parents who attend.  We're not sure why they're not coming...we have asked them, but haven't gotten a clear picture of why they don't attend.  It could be that they're busy, exhausted by the evening, can't get babysitters (a common problem for kids with autism), or they are simply not interested in the topics we present on.  Would you all mind if I asked your opinion?

 Some of the past topics:

-ABA therapy overview, plus Q & A

-Social Stories

-Visual Schedules - Make-and-take

-Behavioral Issues, modifying behavior

-Dealing with the Holidays/Birthday parties

-Developing Play Skills, working on play dates

-Power Cards

-Appropriate play skills re; games, plus toy suggestions

Some of the topics we haven't presented on yet, but we are interested in:

health and safety (home, school, stranger safety)

sexuality

chore charts and job skills in the home

What do you all think?  Any additional suggestions?  I would like to start this program up again, but my colleagues are so bummed out that they don't want to try, for fear of being disappointed again at a poor turnout.

Please let me know what you think!!  Thank you!

-

JohnPaul received an electric cordless rechargable shaver for Christmas.  His father wanted to be the one to show him how to use it.  He came downstairs today looking very dapper and quite clean-shaven.  It looked like a big success to all.  Then later he needed to be sent upstairs, as he was not behaving, and when I talked to him about his behavior, we got onto the subject of school.  Next year he will go to High School, not sure which one, but he will be in 9th grade, so a school change is in order.  OH dear, the floodgates opened.  He sincerely cried and cried, explaining that he didn't want to get older and change schools, that he needed things to stay the same, that once he moved on, "everything will be lost".  I sat next to him, hugged him, listened to him...he expressed himself very clearly.  I quietly reiterated that he would still change schools (and teachers), but that he was allowed to feel sad, that is OK to do.  As he calmed down, he did get a little testy, asking me what would happen if he shaved off his body hair.  I told him that I would take the shaver away.  A natural consequence, I think.  He thought about it, asked again, and then decided that he would not shave his body hair.  I let him take a bath, and I threw in some baking soda (perhaps it would help him to calm down), and now he is watching a movie with his sisters quietly.

Probably part of the disruption is that it is vacation, which gets boring and there is little routine, and that always gets him out of sorts.  I had forgotten how vacation can affect us...it's never pretty, is it?  I have double the laundry and cooking to do, the kids feel compelled to tell me constantly how bored they are...we aren't purposeful.  I eat more.  I complain more.  I worry more.  I stay up later, and cannot sleep later because the kids get up so darn early to play.  That's vacation for you.  read more »

It's hard to find presents for JohnPaul.  He's still a little kid mentally and emotionally.  Here he is. tall, dark, and hairy, must be at least 5 ft 10 inches tall, and he wishes he lived on the Island of Sodor!  (where Thomas the Tank Engine lives, for those of you who haven't been indoctrinated). 

But wait!  This year it's different.....he actually told us what he wants. 

He wants to shave.

Yikes.  Oh, double-yikes.  I have a flashback to when he was 6 and he found his sister's Bic razor in the shower, and he took off part of his lips.  We found him in the bathroom, bloody and triumphant.  Oh Shit-yikes.  read more »

We have had rabbits for pets for about 12 years.  Our first were outside bunnies, which were very unfriendly and generally afraid of us.  They couldn't be cuddles, or even held because they were so frantic to get away from us.  Also, they died gruesome deaths.  Next we had an indoor bunny named Petersam, who litter-box-trained himself and was lots of fun.  Not too cuddly, but had a lot of personality and spunk.  He died this past year (was 7 years old) of asthma.  Meanwhile, we had acquired another outdoor rabbit named Spring.  She was put to sleep yesterday, due to what we think was a brain tumor.  It was as though she had had a stroke...she lost the ability to walk, eat, toilet herself...so sad.  We felt it was important for the kids to still care for her, since this is how life is, but she became so ill that we did need to put her to sleep.  JohnPaul and Dorothy (20) went with me to the vet, and when the doc was administering the final injection to our bunny, I asked JohnPaul if he knew what was happening.  He hesitated, saying "yes", that Spring was going to die.  I asked him what that meant.  He again hesitated, then said he didn't know.  'Will she come back to us like she was before?' I asked.  "no", he said.  'Will she eat and play and breath?' I asked.  "I don't think so "  he said.  "Will she live with us anymore?'  I asked.   "Uh, no."      So he has the general idea, although the concept of death may seem more like being invisable to him than not existing.  I remember when my mother-in-law died, JohnPaul was 9, and he ran around the wake like a nut, commenting that Nana 'was in a bed', and when was she going to get up?  None of the old people at the wake had ever heard of autism, so they thought he was misbehaving terribly and should be spanked.  At the funeral, he wanted to play in the dirt that had been dug up for her burial.  Since th  read more »

JohnPaul just turned 14.  OK, that's always tricky because his birthday is dec 1st, so we have to watch how we give presents.  Not too generous, not too miserly.  Then the buying fever hits us, not so much out of generosity but mainly a panicky "I-don't-want-to-leave-anyone-out-God-I-hope-I-didn't-forget-anyone" feeling.  It all spirals out of control, to the tune of "Silver Bells" and "Grandma Got Run Over By a Reindeer".  I rapidly use up all the wine I was saving for Christmas dinner, just to cope with the undercurrent of inadequacy I always feel.  And it doesn't have to be this way!  (I tell myself)  Christmas is a time of joy!  Sharing with others who have less than us, remembering the poor, the elderly, reaching out to all (as I reach out for the corkscrew).  My coworkers and I have decided not to give to each other this year, or to our students.  Instead we will buy food for our local food pantry.  I'm making a big effort to practice all the carols I know on piano and guitar, in the hopes that when our families get together, we can sing together.  And most importantly, I'm reading to JohnPaul about the Christ child.  read more »

Every family is a unit...made up of individuals who function independently within the family, and they all work in a coordinated (or, in my case, UNcoordinated ) fashion as part of the family...like organs and limbs and parasites all are part of the overall human body.  Yeesh, so far this is the worst thing I've ever written!  Well, bear with me.

When all my 4 kids were young, and I was an at-home mom, things ran pretty well.  Autism entered our lives, and it was chaotic for a while, I admit, it was chaos for a long time. 

What changed?  What swung the balance in our quiet lives from calm family with extremely difficult kid, to calm kid living in extremely difficult home?

One word:              TEENAGERS

I now have a 20 yr old daughter with OCD, depression, endometriosis, chronic headaches, and painkiller dependance.  I also have a 17 yr old who has just been dx with an eating disorder, who won't talk to me or let any of us touch her (hug her, kiss her, be affecetionate with her).  I'm 3 years past breast cancer with no re-currence, the medication has tossed me into menopause and oh boy is that fun.  (being sarcastic here)

So my perception of autism has completely done a 360.  It ain't so hard to deal with, after all.  I guess it's all relative.  When JohnPaul was diagnosed, I felt like I was drowning at times.  The concept of having to care for a child who would always be a child and always therefore need my care was overwelming.  Now my son is a pleasure, compared to those 2 vixens upstairs.  Bring on the economy crash!  Bring on global warming!  If I'm still alive and standing by the end of next week, I can handle anything.    IF.

My friend Michele and I both have boys with autism who are soon to turn 14.  Here in New Jersey, that is the magic number for what's called "Transition".  You have a big meeting, much like an IEP meeting, and you plan what your child's needs are for high school, so that he has what he needs for adult life. 

No small task!

So I'm supposed to know what my son's future is, and can tell what he will need for highschool, in order to get him there.  omg!!!!!!!!!!!!!Michele and I have been to lots of talks and workshops in our sons' 14 years.  Now we see that they are all generally geared towards young kids with autism;  behavioral help, ABA, stimulating language, social skills, eating problems...well, we've lived thru all those, but now we're faced with Life Skills,  Vocational training, and the ever popular Sexuality.  omg!!!!!!!!!!!!!!!!!!!!!!!!!!!!(did I say shoot me now?)

We went to a friend of ours who is a case manager at our local hospital, and she immediately set up a series of workshops that we desperately need.  The first one was last night - "Transition and the IEP".

IT WAS GREAT!!!  the lady talked about who should be there at a transition meeting, what should be discussed, what will happen...all those parts made me feel empowered.

Then she talked about how bad it is in NJ...how the waiting list for housing (group homes and apartments) is at least 10 years.  And that's if you are considered a priority because you're over 55 or you have a life-threatening illness.  Otherwise it's longer.  Oh no.

   read more »

We  thought we had a great idea!  It looked like it was helping.  We all had the best intentions, believe me. Here's what happened:

  JohnPaul, who is 13 and has autism, does have impulsive reactions when he is angry.  I don't think he can even identify in his own mind that "Son of a gun, I'm angry!", but he definitely does get angry at times, and his reaction is usually one that a much younger kid would have - hitting or calling the person he is mad at insulting names, or throwing something (usually something small).  Since he likes to draw, one of his sisters had an idea to have him draw a picture that would express his angry feelings.  He came up with a good one.  He drew a picture of her (he was mad at her), with a speech bubble coming out of her mouth saying "I'm Therese, and I'm a weenie".

Wow!  The picture diffused the anger, and plus he got a lot of positive attention for the drawing.  OK, he likes this form of therapy, so for the next few weeks, whenever he gets riled at someone at home, he draws pictures and then tapes them in a prominent place for all to see.  But they turn violent.  He's mad at his other sister, so the picture is of him laughing smugly while she is electrocuted with Christmas lights wrapped around her.  He gets mad when I insist he must take a shower, and then an entire series of comic book vignettes appears on the fridge involving me in a guillettine, me falling thru a trap door, me getting run over by a truck...while he stands nearby.

Whew.  The last straw was the picture of his younger sister's bottom being roasted in the fireplace.

OK, the tantrum rate has gone way down, but the sadism level has gone sky high.  read more »

Leisure skills are important.  Mucho Importante!  or I guess it should be "muy importante".  Hey, don't distract me!  I've been thinking about leisure skills for our kids with autism since my last blog...and it's bugging me!  You may or may not know that, besides having a son with autism, I am a speech language pathologist in a public school, and I work with children who are on the autism spectrum.  I also have many friends who have kids with autism, as well as having a nephew who has autism.  There must be something in the water here in NJ!  (haha, not actually so funny because there IS a lot of crap in the water AND in the soil AND in the air).  Well, in our schools, social skills groups are usually in everyone's IEPs because that's how social skills are adressed, right?  Well, I had forgotten the fight I put up when my son was younger and had recess...I couldn't figure out why social skills were not addressed every moment of the day.  And I kept asking why couldn't the aide who was with him at lunch and recess facilitate some kind of appropriate play interaction with the other kids?  I never got an answer, except that maybe I was asking too much.  read more »

Ask any typical kid - what do you do for fun?   and they can tell you.  Somethings they'll say are appropriate.  Some things they might not tell you, because they're innappropriate.  Either way, most kids have things that they like to do in their leisure time. 

With autism, it's different.  Or, should I say, the motivation is very different.  Kids with autism don't necessarily want to please others.  They often have something running in their heads that commands all their attention, or they have a need to stim in a very personal, physical way that defies our understanding but makes perfect sense to them.  You got your flapping stims, your movie talk stims, and your "should-be private" stims (nose-picking, hand-licking, body-parts-rubbing or scratching).  I have had parents complain to me that their kids have nothing to do, and will walk around and actually get themselves into trouble by their behaviors.  One kid loved office tools, and hole-punched all the mail that came in every day, including pay checks, so that they couldn't be cashed.  read more »

When we got the dx of autism, it was a big relief to me.  I had been reading and researching like crazy, and happened to read a book that was written in journal-style about a boy who happened to behave so much like my son...that's how I began to understand that my boy had autism. 

The first thing both our families did was to blame the 'other side':

"Your family has multiple instances of mental illness - that's where the autism came from!"  (translates to" your whole family is nuts!")

"Your family has several people with autism" (my brother's son has autism)

Back and forth, blame and counter-blame.  Didn't do anyone any good.  We still have a kid with autism.  Well, eventually that blame thing died down, and we forgot to do it.  Instead, we were able to look to who our son really is.  That's a good thing!  Because I think, of all the things we want to be accepted for, who we are is the number one on our lists, right???  Of course, right!!!

This Halloween we had fun the ASD way!  My son who has autism and I went to a party given by a classmate and his family, and all the kids from their class on the spectrum were there.  There was trampoline jumping, swingset swinging, pizza, and lots of cupcakes.  Then we went trick-or-treating.  The great part about attending a party where almost everyone has autism is that no-one is embarrassed or self-conscious about behaviors.  The parents can relax and, while they still correct innappropriate behaviors, they don't have to worry that someone will think they are bad parents, or wonder 'what the h- is wrong with that kid?".  It was a chance for all of us to relax; kids and adults.  Wish the rest of the world could be as accepting as our friends with ASD are.

Tonite we watched some "I Love Lucy" episodes on DVD.  We sat on the couch under a blanket, and my huge 13 yr old son with autism sat next to me and leaned into my lap and snuggled against me.  I felt just like he was a little boy again, although when he was little, he was not capable of snuggling.  This was like a great big reward!  He was never a hand-holder, or a hugger or kisser.  Now that he is older and more mature, he is able to do these things, and will often show affection to me or his sisters.  The shame of it is that, now that he is older, he is too old to kiss me on the neck, or sit on my lap, or be too affectionate.  It is innappropriate.  I hate to let that part of our relationship stop.  It seems so unfair that I didn't have that with him when it should have happened, and now that he's finally able to make affectionate gestures, I have to tell him that he cannot kiss me on the neck, but he can hug me, or kiss me on the cheek.  I remember all the days of leading him places, and holding his hand but his hand was limp in mine.  Then one day, on the way out to the school bus, his hand slowly gripped mine...I cried that day - I was so happy to feel his little hand holding my hand.   read more »

Gluten-Free.  The very words sent fear thru my trembling body.  I already had a husband with food allergies and a special diet, and I had 2 young daughters underfoot.  Then JP came along, got diagnosed with autism, and the new mantra was gluten-free.  I could not do another special diet!!    Well, I did another special diet.  What the hell-

Actually, "special diet" should be my middle name, cause baby, I'm good at it.  I hate doing it, but I'm darn good.  I can juggle plates and menus like a short order cook in a small town diner.  Eldest daughter has milk intolerance?  No problem.  Second daughter just broke out in excema?  No problemo, mijo.  Husband has Chronic Fatigue?  I'm on it!  (now there's an ironic illness label if ever I saw one.  "Chronic Fatigue Syndrome".  Do we know any mom who doesn't have chronic fatigue?  HA!)  So OK, now we need to explore the world of gluten-free, but within the context of autism.  See, my other kids (and hubby) would eat whatever I set in front of them.  Soy.  Duck eggs.  Potato pancakes.  So modifying diets was really not too hard.  All the magic happened in the kitchen, and they did the eating part on their own.  Now switch to a kid with autism, who is already very picky, and brand-specific, and shape/color specific, and I had no clue I was up the friggin creek!!  This child would not eat what I put in front of him!!!  Life was a misery for 4 months, which was how long we lasted doing the gluten-free thing.

I did not see any changes in my son, positive or negative.  Good.  I put the gluten-free diet (nightmare) out of my mind.  read more »