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

Archive for August, 2011

The End of The Road is Just the Beginning

Today, we finished an enormously long process.  Wilma is now finished with her third diagnosis after a summer of EEG/ MRI/ bloodwork/ neurologist/ psych consult/ 5 appointments at the autism center/ stacks of paperwork.

About a year ago is when we started to suspect something was up with Wilma other than “just” hypotonia and a speech delay.

Someone on a message board where I had posted some of Wilma’s symptoms 5 months ago asked for an update and I realized that a TON has happened since then and I haven’t updated everyone.  We did the MRI, EEG, bloodwork, psych consult, neurologist, and a few truckloads of paperwork.

The MRI and EEG showed no seizures.  Meanwhile, her behavior got a LOT worse, almost overnight.  Her out of context speech got a lot worse too.

Hey Wilma, what’s up?  “why do the cars change traffic when the jaguar has a tail on it?  because they have sippy cups.”    Every word is English but when she’s having an episode her sentences make no sense and words just come flying out of her brain.  It happens often and it freaks people out.

Five months ago, she had no ASD symptoms that I could pinpoint.  Now she has a ton of them!  I filled out the vineland and srs, etc etc and we had 5 appointments in the last 2 weeks to give her a pdd-nos diagnosis.  Her autism is a million times different than her brother’s, but I finally do recognize it as autism now that this summer has gotten more and more spectrummy for her.  As of this morning, pdd-nos is official.  She now has hypotonia, adhd, and pdd-nos.  ODD is part of her pdd-nos but the psychologist assures me that though we’ll now be traveling down the path of psychiatry appointments and medication management, we will not need a separate ODD diagnosis— it’s just a piece of her pdd presentation.

Meanwhile—- we ruled adhd right back in— the psych and the neurologist got on the same page and diagnosed her and started her on meds.  The first week on meds I saw NO DIFFERENCE and was getting frustrated.  Week 2— I saw a difference–Thank goodness!   There were 2 days in a row that she didn’t scream or tantrum or throw things or kick or hit or even be oppositional.  Day 3 we saw glimpses of misbehavior and she needed some time outs again but STILL.  It’s not perfection, but I’ll happily take an improvement!

I’m seeing glimpses of how she used to be at age 2 and 3….  calm and compliant and sweet…. I’d missed that lately!

So she’ll continue with physical, occupational, and speech therapy and special ed.  She’ll be in preschool from 12:30 to 3:30 tuesday through friday in an integrated special ed class.

More good news.  We’re up to averaging about once a day for potty success.  WHEN she’s in the mood— she’s compliant, her meds are working, and I suggest trying to make on the potty, she MAKES and is so proud of herself.  I try to encourage her to sit more often than once a day but she’s just not ready.   “no mommy I don’t want to pee on the potty now– maybe later”.  (on a good day when the clonidine works well) and “ASDSDGHDSFHGSDGHDSHJHJJJ!!!!!!!!!!!!!!!!!!!!!!!!   NO POTTYYYYYYYYYYYYYYYYYY!  (runs around the house naked)  (on a bad day!!!!)    With all the tumult in her life (and with all the craziness of toilet training her brother) I’m just not pushing quite yet.  Let her get used to her new preschool class first.

But then when she’s having an episode of adhd/pdd  whatever the heck she’s got….. I’ll say “do you want to sit on the potty?”  and she’ll tell me she was an astronaut last tuesday because she ate a pizza.  *sigh*

Meanwhile, when people first meet my kids, if she’s acting normal, her twin brother is the one who’s more obviously special needs and people wonder why she’s not in a typical school setting.  But this summer she hasn’t acted normal a whole lot…..

ABA has now been recommended for her.  I have no idea how to get it without spending money……  we were lucky with Fred— the school district ALSO felt he needed ABA.  The school district feels that Wilma does well with an integrated classroom setting (hey— she does– they’re right).  So I don’t know how to get her free or cost effective ABA.  Something else to consider.

Today’s facebook status update:   adhd diagnosis and pdd-nos diagnosis now finalized- she’s on meds. Now she needs a psychiatrist for med management and now possibly going in a different direction for potty training—- it was suggested that we give consequences for wetting herself….. I’ll go over that idea with our board of developmental disabilities rep.

That’s just one of my twins…… well, something has to give, between all the specialist appointments, therapies, and paperwork for both twins…. since my sanity has been hanging by a thread lately, I’m about to be making big changes in my business.  More on that to come— I need to call my friend tomorrow and discuss it with her first.

The end of the road (finalizing her diagnoses) is just the beginning— I’ve learned that multiple times in the past few years.  These things tend to lead to more paperwork, more processes, more waiting lists, more phone calls, and more frustration.  On the other hand, the more of this we do now, and the more glimpses of normalcy we see, the more of a chance we have in the future of mainstreaming the twins into a typical school setting.

A neighbor told us that so and so (another neighbor with a kid with autism) gets 3 hours a day of respite.  3 hours a DAY?  what?  So I spoke to her and she told me to beg for it, demand it, and just not take no for an answer.  Not my personality for sure.  I’ve been very thankful and grateful for the $2000 a year I *am* getting.  However, I spent $1200 of it on daycamp this summer and another $400 or so on an in home respite care worker (babysitter, really).  I do need more.  I’ll do a little begging, but I have to prepare for the eventuality that I’m not going to get much of a break this school year……  Fred will be in preschool from 9:00 to 2:00 Tuesday through Friday.  Wilma will be in preschool from 12:30 to 3:30 Tuesday through Friday.  That leaves me 4 days a week from 12:30 to 2:00 without being in charge of a child with severe behavior problems.  12:30 to 2:00 4 days a week to do all my laundry, bill paying, cooking, cleaning, organizing, money making……  good thing I’m a night person and I’ll also have nights but I’ll write another post soon on why that’s not really true……

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Autism and the Jewish Community

I have plenty to say on the subject of Autism and the Jewish Community, but right now it’s almost midnight, I’m tired, and I can’t get my own thoughts together.  But when I do, I’ll post, have no fear!

For now, I wanted to link to this wonderful article by Jacob Artson, a young man with autism.  Jacob has a dream.  Enjoy!

HFA versus LFA

People ask me ALLLLL the time whether my twins are high functioning (HFA) or low functioning (LFA).  Truth is, I don’t know.  I have their test scores and I know where they score in relation to neurotypical kids and in relation to other kids with autism, but I don’t officially know whether they are HFA or LFA and truthfully, I don’t really care.  They’re high functioning because they walk, talk, eat, and are academically either on target (Wilma) or ahead (Fred).  They’re low functioning because they are about to be five years old and are not potty trained, cannot dress themselves, and in Fred’s case, cannot be in a group situation without a massive meltdown.  Both were in “regular” special education this year, with half the class special ed and half the class neurotypical.  Wilma does well in that setting.  Fred had a rough year and this year will be in a class of all kids with autism.  He’ll have more adult attention, and the addition of ABA (applied behavioral therapy).

A friend of mine on one of the autism facebook groups says the following about HFA versus LFA and I asked her permission to share it here on my blog.  I found it fascinating.  Her name is Heather E. Sedlock and she herself has autism.  Read on!

Heather E. Sedlock: Okay, I’ve been thinking about this and I”m about to (was going to drop it) detail *why* I find the terms LFA/HFA less than desirable. When i do so, it is NOT a judgment of those who have used the terms here in this group or elsewhere. It is just *my* interpretation of why the terms need to stop being used and some news ones defined if really necessary.

When you call me “HFA”, you totally dismissed all my struggles. It’s like saying, you can talk, walk, feed yourself, so you’re perfectly fine and can’t possibly understand what it’s like to not have skills so needed for life. The struggles I face daily are summarily dismissed as if they do not occur because the focus in on what I can do and not what I cannot do. Therefore, it is as if I don’t need any respect, assistance, guidance, and understanding as an autistic person.

When you call me “LFA”, you totally dismissed all my strengths and battles overcome. All the progress I have made in a certain area is summarily dismissed as if they did not occur because the focus is on what I cannot do and not what I can do.

Autism comes with a mixed skill set. Period. It doesn’t matter what type of autism it is either. That is part of the diagnostic criteria because *every* person (child or adult) that has autism has a mixed skilled set. By focusing on one set or the other, you are saying, to me, that the other side does not exist. Therefore, you are limiting a DESCRIPTION of MYSELF to one area. You would not like to be defined or described by one skill area, would you?

Thank you Heather!  Whenever I think of HFA versus LFA, I’ll be thinking of this post!

Describe a Typical Day In The Life of This Child, Morning Through Night

 

Entrance to the Occupational therapy Department

Image via Wikipedia

One constant in my life is PAPERWORK.  The SRS, the Vineland, the CFQL, the stuff for the neurologist, the stuff for the genetics guy, the stuff for the psych consult, the stuff for the county board of developmental disabilities, the stuff for school, the stuff for daycamp #1, the stuff for daycamp #2 (they’re in two camps this summer— one just ended and one just began).  I’m always working on some stack of paperwork or another.  Whenever I think I’m done for a few weeks, something else pops up.  The stack I’m working on now is specifically for Fred and I’m not yet ready to say what it’s for.  But I did want to share how I answered one of the questions:  Describe a typical day in the life of this child, morning through night.  I learned about myself and my child while coming up with the answer to this question.  My husband helped me.  THIS is how we spend our Saturday night at 11:00 pm.

As you’re reading this, remember that he’s about to be five years old.

Fred sleeps with a child lock on his door so that before he wakes up he cannot access his sister.  He sleeps in a Goodnites brand overnight diaper with stretch pants and a onesie on top to prevent diaper digging.  He wakes up in a good mood, chewing on his favorite Curious George stuffed animal.

I change and dress him and his twin sister and give them breakfast.  On days he has daycamp or school he rides the bus (in a harness) to school or I drive him and his sister to daycamp (in carseats).  On non school/ camp days, he likes to draw on his magnadoodle, play with blocks, spell with magnet letters, do math workbooks, read books, jump on his trampoline, and be tickled.  He is not as prone to enjoy playdates with children his age or typical games for four year olds as he has trouble taking turns.  He doesn’t enjoy taking walks if the destination is unknown and therefore requires that an adult push a stroller so that when he melts down, he can sit in the stroller.  He requires constant redirection so as not to stim on particular toys or activities.  He needs frequent reminders before activity transitions will take place.

We tend to avoid group activities:  picnics, barbeques, parties.  His behavior in public is completely unpredictable and though at times he is successful, he most often needs lots of support as he tantrums, screams and bites.  He does well in a SMALL group with mostly adults.  In a larger community event or a room with more than two or three children, he is extremely overwhelmed.  We try libraries and playgrounds from time to time but those visits need to be short and well supervised.  As his twin sister also has special needs I can no longer take them both to the library or playground by myself due to his unpredictable behavior.  If she refuses to leave the library, he bites me and then runs off to bite another child while I’m picking her up.

Going to the dentist is a horror show.  Thus far, we’ve been using a dentist who does not put children to sleep.  From now on, we’ll be going elsewhere.  I’m physically incapable of holding him down without getting extremely bruised in the process.  Going to the doctor has been getting steadily better and his behavior is unpredictable—at times he’ll tantrum as we’re walking in and at other times he’ll play happily until he sees that he’s about to be examined.

As he is not yet toilet trained we are sitting him on the potty every hour on the hour.  He does not yet use the potty but he is now comfortable sitting there as long as we don’t ask him to perform.

After plenty of occupational therapy he is now extremely successful with bathtime and enjoys it.  Nail cutting, however, is still a massive challenge and a two adult effort.

At this time he has no problems with eating what is served to him although if he’d rather play than eat, he tantrums and requires a four minute time out in his room before he will buckle down to eat.

He is a good sleeper and sleeps through the night but usually takes a while to settle and runs around his room.  This is typically when he chooses to defecate so I go in and ask him if he needs a change and I change him.  THEN he goes to sleep.

Mothering this child is my greatest joy and my greatest challenge in life.  It’s very difficult to hire a babysitter or  leave him in a room unattended for a few minutes.  However, I need to make an income so I work at home.

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How Fred is Potty Training Me

My twins are about to turn five and neither is potty trained.

With Wilma, I see light at the end of the tunnel.  WHEN she’s in the mood to sit on the potty, I can usually encourage her to try, and she makes (#1, not #2).  She gets a treat and lots of praise and she’s thrilled.  And then 20 minutes later she pees in her pull up.  But she GETS it.  There are two things keeping her in pullups now….. #1, she dribbles every 20-30 minutes rather than holding it in and making once an hour or less.  She certainly can’t be bothered to go to the potty that often.  It’s a muscle thing having to do with her hypotonia, apparently.  But I’m thrilled that she can control herself enough to on purpose put something in the potty when she’s in the mood (a few times a week or so).  #2, she’s not often in the mood.  We JUST started adhd meds.  When she wants to be compliant and do what she’s supposed to do, it’s fine.  But more often than not, I suggest sitting on the potty and she takes the towels off the racks, reads the shampoo bottle, turns on the sink, says nonsense sentences (her latest one is “why does the traffic change cars when there is a jaguar with a tail on it?  Because they have sippy cups!”) and can’t focus enough to be willing to sit for 60 seconds.  If I have her sit on the potty in the living room or in our bedroom (take away the distraction of the bathroom), she’ll often lie down on the floor and scream like I’m torturing her.  So I just tell her “someday you’ll be ready to put everything in the potty instead of in your pullup”.  On the outside, emote patience.  On the inside, tear my hair out.  She might be trained within the next six months if these meds work.  If she wants to be.  If the stars line up.  If there’s a full moon.  Pray for us.

Porta-potty with rattlesnake warning sign at L...

Image via Wikipedia

And then there’s Fred, dear Fred.  On the advice of the board of developmental disabilities, I sit him on the potty once an hour every hour for a few minutes and give him an M&M.  This is to get him to associate the potty with treats and happy times—– months ago, he used to bite himself and scream bloody murder every time I asked him to sit on the potty.  So now he’s happy to sit and he’ll even sit for five or ten minutes.  But heaven forbid he PUT anything in there.  He holds it in on purpose.  The books about training kids with developmental disabilities recommend timing the potty trips around the drink schedule—-  I DO put him on the potty at the time I know he needs to make #1— I can predict very nicely when he’ll need to make.  Evidence of that is after I finally allow him to get OFF the potty, it’s less than five minutes later and he has a wet pull up (or underwear, or floor—- underpants doesn’t help the process, it just creates a mess— so we’re still in pull ups).  He won’t stand at the potty or toilet at all, so we’re teaching him to sit.  But apparently I’m teaching him to SIT but not to MAKE.  I cannot tell you how incredibly frustrating it is to sit him down once an hour every hour and give him an M&M and say multiple times per day “soon you’ll be putting everything IN the potty instead of in your pullup!”.    We are having the TINIEST bit of progress with #2 in that I ALWAYS know when he’s about to do it— he has a special dance he does and he says “ouch ouch ouch my poopy hurts” for ten minutes up to 4 hours before he finally does it— in the pull up.  So during his dancing, I encourage him to sit on the potty— one time he said “can I go?  can I poop?” and I said “absolutely— right there in the potty, go ahead” and again he started screaming and biting himself.  Put the pullup back on, it was dirty less than 2 minutes later.  So everytime  he does his dance I tell him he’ll be so proud of himself if he does it in the potty instead of in his pullup……  is the poopy dance progress?  It WOULD be for a two year old, for certain.  But I’ve given up hope of potty training him by I don’t know, six or seven years old… numerous times over the past two years.  I’ve been reading books of kids with such classic autism still working on training at seven, nine, ten years old and I just sigh in frustration.  He’ll do it when he’s ready, yeah yeah yeah.  But if I saw an inkling of progress like I see with Wilma’s 2-3 times a week of success, I’d be so much happier.

Potty training, for me, is that hard, dark line in between “my kids have special needs but perhaps someday can be mainstreamed with an aide or even outgrow some of their most difficult behaviors” and “will public school special ed even be enough or are they both going to be going to special schools for kids with autism a few years from now?”  I have a rough time sitting on that line because often times I don’t know in which direction to focus.  Are their special needs extremely profound, or should I adopt the incredible optimism of my mother in law, who like every good grandmother just worships the ground they walk on and they could do no wrong, so WHAT if they’re not toilet trained when they’re teenagers?

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Sweating Through a Parking Lot

Everytime I take my kids by myself somewhere, I have to plan ahead.  Will Wilma flop down in the middle of the parking lot and refuse to walk?  If I’m alone with her I can pick her up.  But if Fred is with us he can not simply hold my hand and walk nicely while I carry his 45 pound sister.  When she pulls this, he immediately bites me.  EVERY time. It’s impossible to hold his hand while he bites me.  I no longer have a double stroller which fits in my tiny car.  I have a great double stroller to use for walks around the neighborhood, but for car trips I typically depend on going places where we quickly walk through a parking lot, go in, and the kids get absorbed in whatever is inside (toys in the doctor’s office, books and toys at the library, the fun at daycamp).  I did recently get a larger size single stroller for Wilma for trips to the hospital where there is lots of walking (we recently did an EEG, an MRI, the neurologist, and other fun stuff at the main campus of our hospital which is not friendly to a hypotonic 4 year old on the spectrum), or for the mall if I EVER venture to try that with the kids by myself again (not bloodly likely).  I CAN take the kids to target, walmart, and the grocery store— they LOVE to ride in the cart.  But at 40 and 45 pounds, once I have the kids in the cart I have no room for groceries.  But that’s ok because with the kids in the car seats in the back, and a mountain of stuff in the trunk I haven’t had time to clear out (more in another post on why I have no time), there’s no room in the car for STUFF anyway.  When I take the kids to walmart or target it’s to get a couple of items (usually diapers– more on the evil topic of potty training in a future post), but mainly to get OUT of the house.  Staying home with both of them all day is a challenge to say the least of the matter.  But going anywhere with them that isn’t target, walmart, or the grocery store is also a severe challenge.  I’d given up on the mall, and I’m about to give up on the library too.  More on the playground in a future post….

You know how you sometimes see a mom with neurotypical kids walking through a parking lot and her two, three, or even five or six kids are just walking next to her or holding her hand and the act of getting from point A to point B just seems to be no big deal?  I get that every now and then and today, TWICE, I did— I was thrilled.  But then there are days like yesterday.    I took them by myself to orientation for a camp program they’ll be starting on Thursday (their main special needs daycamp program will be ending, and they’ll be doing a seven day program specifically for kids with autism).  So I get to a large parking lot in front of a large building and I’m not sure exactly which door to go into—- I’m sensing trouble— the last time this happen I ended up with six welts on my arm and I was covered in sweat within three minutes.  By the grace of God, both kids happily walked holding my hands from the car into the building!  And when I asked someone where to go, they happily followed me!  WOW!  This might be a great experience!  They enjoyed the orientation, playing with the toys, meeting their teachers, etc etc and then…. it was time to leave.  I had such a great experience walking IN with them that it just didn’t occur to me to worry about leaving.  It’s always when I’m on a high and NOT expecting trouble……

Wilma refuses to leave.  She flops down on the ground, kicks her feet, flails her arms and I calmly ask her to get up approximately 17 times because I know I can’t carry her to the parking lot because Fred will then bite me.  While I’m calmly asking her to get up, he bites me anyway.  I calm him down while she runs off.  I gather her and she actually starts walking.  We pass an entire class of kids their age– neurotypical kids all lined up nicely at the door waiting for their parents to pick them up (there is a “regular” camp group that meets in the building).  I’ve got sweat dripping down my face but no hands to wipe it because if I let go of her for a second, she’ll run.  If she runs, he’ll bite me.  The teachers are watching me.  We get out the door.  She flops down again.  Again, I tug at her arm, gently enough so it doesn’t leave it’s socket, but firmly enough that she gets that I will NOT be carrying her and I will NOT be letting go of her hand.  He bites me again.  I calm him down again.  Now my entire face is covered in sweat.  THIS is when a friend of mine comes towards the building— her daughter is in the camp group we just passed, and she’s there to pick her up.  Her kids (all 87 of them—- ok, I think 6) are neurotypical.  One of her kids is my kids age and has been toilet trained now for approximately thirty seven years (I have a few insecurities about the fact that I CANNOT toilet train my children- more in a future post!).  In her mind, she’s thinking— oh, it’s nice to see you– your kids are getting so big– have a great day!  In MY insecure mind, she’s thinking—- oh wow, one kid screaming and flopping, one kid biting, what is going ON with her parenting skills?  Meanwhile I’ve taken a lot of parenting classes and have read a lot of parent books and am amazed that my twins’ behavior continues to stump me so much.  God has blessed me with these children to teach me lessons about patience and behavior management.

Hoping for more than two days in a row when I can make it through a parking lot without being covered in sweat and bite marks.

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WHY SortedMegablocks?

I have three other blogs– everyone knows the blogs are mine, there’s nothing private about them, and the purpose of those blogs is strictly business.  Everytime I make a post on one of my blogs I think that I REALLY should be blogging about my personal life— the life that revolves around Orthodox Judaism and special needs twins.  There’s a lot that is really unique to our situation that I think can inspire and help other families.  At the same time, blogging will help me cope.  I’ve been more and more overwhelmed over the past year or so, and joining the ASD blogging community and being a part of a network of families struggling with similar issues will surely be helpful.  I’m on a couple of facebook autism groups and they’re very helpful.  But I haven’t shared my entire story.  So bit by bit, as time permits, I’ll share it here.

The name of the blog represents the first moment I knew that either of my children has an ASD.  My son, “Fred”, who is now 4 and a half, was sorting his megablocks by color at thirteen months.   Yellow ones here, Red ones there, Blue ones there.  When I would move one to try to show him how to stack them, he’d cry.  He had always been a lot more intense than his twin sister and had a lot of funny quirks.  A little over half a year later, he ended up with his provisional diagnosis.  We didn’t do his official diagnosis until this year because hey— if it walks like a duck and quacks like a duck, treat it like a duck.  He was already in special education, occupational therapy and speech therapy.  Since we weren’t yet ready for anything requiring special funding (our state has special funding for autism schools, OR for one on one aides to help mainstream at typical schools– but in order to access the funds you need to be outside of public school.  So far, my twins have been in public school)– he didn’t NEED a diagnosis.  For various reasons (for a future post!)– he needs one now.

“Wilma” was the reason the county’s program for special needs 0-3 year olds kept giving us home visits during the twins’ first year.  She was hypotonic and delayed in all of her milestones.  She didn’t even cry for a long while— she had an insistent little squeak.  If her twin brother hadn’t been insanely loud, we may have slept through some of those middle of the night feedings.  She was an incredibly easy baby.  And then the twins turned one, and all of our attention began to turn to her brother.  We thought we had a handle on her special needs:  hypotonia and a speech delay.  We still had no inkling that she could be on the spectrum.  Age two, age three, same thing.  We figured we had a son with autism and a daughter with hypotonia and a speech delay.  Until age three, we didn’t feel she showed any of the signs of autism.  Age three, she also landed in public school on an IEP due to her being behind in so many areas with the gross motor, the fine motor, the speech….. but she was still our social butterfly, having learned to clap and wave and talk to peers long before her twin— autism didn’t even cross my mind.  She was in special education, physical therapy, speech therapy, and occupational therapy, but I still had the optimistic hope that once she catches up with some of her essential skills, she’ll end up fairly neurotypical.

A year and a half later, and I can look back at her journey from age three to age four and a half and see her spectrum behaviors getting more and more intense.  It took me many months to recognize her behaviors as being spectrum related.  For many months I was saying “well, she’s got hypotonia, a speech delay, and SOMETHING else— probably adhd”.  So we got her diagnosed with adhd— through the process of THAT diagnosis, I discovered that she is also on the spectrum.  More on that journey in future posts.

I’m looking forward to the journey of sharing our story through my words.  Please keep our identity private.  My facebook friends will know that this is my blog, but the general blogging community or anyone finding this blog on the internet will know my children as “Fred” and “Wilma”.   Stay tuned for more!

 

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