Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Support Groups’ Category

Autism and Aggression

There are certain images that engrave themselves on my mind from time to time. Much of the time these images relate to children, teens, or adults with LFA. My children, because they are verbal and toilet trained/training, and cognitively fine, are considered HFA. Yet I sometimes feel very alone in the HFA world as my kids (both of them) have the aggression typically associated with the LFA world. My nose has not YET been broken. I HATE saying YET but it’s the truth. My kids are getting bigger, stronger, and more stubborn. With every glimmer of improvement I see, I also see the possibility of me or their father or one of his teachers (he is aggressive at school as well as home) needing medical attention or God forbid, hospitalization.

HFA support groups don’t focus on aggression, which is our biggest stumbling block. I don’t care if my son has any friends if he can’t stop biting. Let’s get the biting under control first. I don’t care if my daughter speaks nonsense if she throws her shoes at strangers, know what I mean? LFA parents don’t feel welcoming, at times, to me, when they’re confused by my kids’ academic and verbal achievements and write us off as “autism lite”.

One of the images on my mind is this….there is a woman on a facebook group to which I belong who was changing the diaper of her teen boy when he kicked her in the belly hard enough to kill her unborn baby (she was 8 months pregnant).

There are many parents who are afraid for their lives because the meltdowns of their children with autism can be very VERY violent. There are teens and young adults who have killed their parents. There are parents who sleep in shifts.

I thank God every day that the aggression we see in our children is less intense and less severe than the aggression typically seen in those LFA children, teens, and adults whose mothers I’ve befriended. However, even though our aggression is no longer multiple episodes per day and indeed there are full days with NO aggression, I still get extremely frustrated by the comments from ignorant onlookers. “Are they retarded or something?” “Spoiled brats!” “Why don’t you give them a smack?”

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Autism Has Made Me a Better Parent

I’m reading this post that my friend made over at SPD Blogger network.  In the last paragraph she writes:

“In many ways, I feel that Autism has made me a better parent. I have come to appreciate the moments and every success that all 3 of my children make. However, it has made me timid. It has, on occasion, made me so nervous that I’m afraid to step out my door to see what the world has in store for us. There are days that I really miss the Mom I was.”

She and I have a lot in common– we both have five year old twins with autism.  I think all the time about how timid autism has made me and how very few times I step out my door WITHOUT pecs, just in case changes of clothing, loveys, and a very healthy sense of trepidation.  Today for the first time in years we had a PERFECT (ok, ALMOST perfect) Shabbos lunch at a friend’s home.  NEITHER of my children misbehaved (greatly).  NEITHER of my children had a sensory meltdown.  BOTH children interacted with the host family’s children.  My son, who pre-abilify would never give a hug to a stranger went up to both the Mr. and the Mrs. of the family (without us asking) and hugged them!  WHAT?!?!?  Abilify might just be doing something for him!  ok, Tenex is still doing nothing for Wilma, but today she was great!!!  So tomorrow when I take the kids out in public, will I be less timid and fearful?  Nope.  I’m realistic— I know that today was a total fluke.

But I NEVER think about how autism has made me a better parent.  So I’m sitting here (with a sinus headache, so it’s not like I can concentrate on work related stuff anyway at the moment) thinking about it.  My twins with autism are my first and only children.   So I can’t compare my parenting to MY parenting of a neurotypical set of twins.

My friends with neurotypical children take some milestones for granted.  For each milestone they don’t have a folder of pecs/social stories/bookmarked websites/loads of posts on online support group websites.  I saw a two year old today who, when she needs to go to the bathroom, goes over to the bathroom, undresses herself, sits on the toilet herself, does her business, washes her hands, and comes back out.  My five year old son is now newly toilet trained, but I help him every step of the way on the potty, remind him to go potty, etc— he absolutely refuses to dress or undress himself— and wiping?  we’re probably a year away from that.  Does it make me a BETTER parent that I’ve spent not hours, not days, but YEARS in preparing my son to get just THIS far with toilet training?  Not necessarily– our kids get to the same place at different rates.  But it makes me a much more STUDIOUS parent.  Out of necessity, everything my kids do comes complete with a laminated social story, a chart, loads of late night hours spent on support group websites.  And now I blog about it all too.

I reach out for companionship.  My friends with neurotypical children are friends with their neighbors, their children’s parents, their general religious community.  I am friends with all of the above PLUS an entire online arsenal of cheerleaders:  fellow autism moms.  Am I a better parent for befriending the women who can help me decode my children’s mysteries?  Nope….. but definitely more introspective.  I think most parents don’t think, when they make a friend…. “how can this woman advise me vis a vis my daughter’s IEP?”  “how can this online website help me learn the tricks to get my son to take off his own sweater?”.

So I’m a more studious and more introspective parent than I would be if I weren’t blessed with children with autism.  And much more timid too.  And that’s why my friends with neurotypical kids will all be at Chuckee Cheese tomorrow, but we won’t be there.

 

Our little update:  Fred is now on abilify and Wilma is now on tenex.  Abilify is calming his desperate questioning “may I calm down?  May I bite?  May I hit?  May I stomp my feet?”  AND is making him more gentle and cuddly.  It hasn’t stopped the biting, but I’m starting to see some differences I like.  Wilma’s tenex is doing diddley squat.  If she’s going to go into full blown crazy mode, this med isn’t stopping it either.  The psychiatrist wants me to give it more of a shot but I think I’m going to ask for risperdal at the next visit.

Support Groups ROCK

I’m in three, count em, THREE support groups.  Actually more than that if you want to count the facebook groups I’m in.

#1 is an email only group for moms of kids with adhd.

#2 is an every other Tuesday moms group via the local Jewish special needs group.

#3 is a six week Tuesday evening group at the local autism center.  The second session is tomorrow night—- this one costs money but our insurance covers it.  Whammo!

Just for kicks I’m posting here one of the posts I sent to group #1.  This will give you a glimpse into our lives.  I took out all identifying names.

——-

hi everyone!
 
______, you are so lucky that you were able to do build a bear and mini golf and fun and stuff, etc etc.  My kids can’t handle most of that stuff and anytime we’re invited to ANYTHING we seriously consider whether we’re going to go and how much support we’ll need to be able to go (come late, leave early, bring lovies, bring pecs, is there a quiet hallway to escape to, do we need strollers, etc etc etc).  I blogged about that actually.  https://sortedmegablocks.wordpress.com/2011/10/17/autism-awareness-in-the-jewish-community/
 
So here’s what’s going on in our lives lately—- the center for autism wants both my kids to have ABA.  ABA isn’t offered in public school.  If you want to get an ABA based curriculum at ___________it comes with a pricetag of $70,000 and the autism scholarship only covers $20,000 of it.  So I figured ANYTHING but public school was financially out of reach for us at this point.  But I’ve been doing research.  I blogged about our big kindergarten school decision.  I found a “free” ABA based program.   neither of our twins will be toilet trained by kindergarten, both (one more than the other) need ABA…… 
https://sortedmegablocks.wordpress.com/2011/11/04/anyone-have-a-crystal-ball/

By the way, if you’re new to my blog, Fred is _____ and Wilma is ________— I don’t use our real names on the blog.  🙂
 
As far as ______ and her ADHD——  far above the hypotonia and the pdd-nos, the adhd is now the stumbling block to potty training.  I have her completely potty conditioned—- *I* sit her on the potty once an hour every hour and she pees.  But if she needs to go at another time (she has a lot of juice and I don’t sit her down 15 minutes later), she doesn’t tell me, she doesn’t go, and she simply wets herself— pullup, underpants, whatever— she doesn’t care— not only that, but she thinks it’s funny.  “look mommy, I wet myself!”.  So I calmly clean her up and say next time you’ll put your pee pee in the_______  (and wait for her to say potty) and with a BIG GRIN she says “in my PULLUP!”  or “ON THE FLOOR”!  She thinks she’s so amusing.  Seems to be the adhd.  I don’t know how to get over this hump because bribes, charts, and taking away priveliges for wet pullups aren’t working.  No success at all with #2—- she NEVER puts that in the potty.  And NO success at school—- she refuses to USE the toilet at school— she just SITS on it.  School has prizes ready for her and stuff I sent from home too.  She doesn’t care.  We’ve got laminated social stories complete with pictures of her sitting on the potty— it’s ridiculous.
 
her clonidine has helped her tantrums, certainly, but it’s making her super tired.  She naps 3-4 mornings a week now.  (preschool is afternoons only 12:30 to 3:30)   But that’s better than non stop screaming.  Gotta get her a good psychiatrist– the neurologist doesn’t want to handle med mangement for the adhd AND the pdd-nos and frankly I need someone who can really dig deep into ____’s whole case and maybe change her med completely at this point.  Any recommendations for a psychiatrist for a 4 year old?
 
And then there’s brother bear.  No ADHD, but the autism is getting worse, NOT better.  He *IS* verbal, which is a bracha, but it’s also a curse.  We’ve been denied SSI because he’s “too high functioning”.  We’ve been denied extra respite because he’s “too high functioning”.  I can’t take him and ______ together anywhere by myself except somewhere with a cart where I can contain one of them to keep them apart.  At home, I send him to his room to get him away from _______ (and he’s HAPPY to be there).  But out in public when she whines and he bites her and I’m alone with them trying to pay for groceries,  well, it’s fun times.  I have a lot of trouble walking them both from the car into an office or store— she flops down and refuses to walk if she’s tired or ornery.  If I pick her up, he gets upset and bites me.  So you’ll see me in a parking lot holding both their hands just standing there while he’s screaming and trying to bite me and she’s flopped down not moving and I’m (patiently) waiting for her to get up.  Some days I feel like toilet training is the least of our issues but I know that toilet training is the benchmark which will eventually enable one or both kids to mainstream.  But they’re about to turn 5 so I’ll have two 5 year olds who aren’t toilet trained and can’t dress themselves and have massive problems with self regulation.  And I can’t get government programs or SSI, so everyone thinks I can raise them with only part time preschool WHILE making a full time income because chas v’shalom there be a job out there for my husband with enough money to support a family.  Good luck to me—- I’m working at MIDNIGHT via internet— it’s insane.
 
I’m feeling very STUCK between the worlds of neurotypical and special needs.  If my kids were neurotypical they’d be toilet trained, they’d be at __________, I’d be able to work a decent number of hours, and things would be calmer.  If they were special needs ENOUGH, the district would pay to send them to ______ or another ABA based program, they’d be in a very intense enviornment all day, we’d be getting SSI and a decent amount of respite funds, and things would be calmer.  As it is, they’re too special needs for a neurotypical environment, and not quite special needs enough to get the help we truly need.   I think this feeling is common for moms of adhd kids, but in my case I’ve got the ASD stuff too and I still feel it.  Just thought I’d throw that out there– anyone feeling what I mean?  Most of your kids ARE neurotypical ENOUGH to be at a Jewish day school, but I know some of you are feeling like they don’t fit in there— but certainly they wouldn’t fit in in a special ed program either……  it’s tough!
 
Sorry for the novel…….  I have a LOT of thoughts lately!

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