Dayenu

In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough.  If he had given us this but not that it would have been enough.  Sometimes when I vent I turn it around.

I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.

If I had twins, Dayenu.

If I had special needs twins, Dayenu.

If I had to work because we can’t survive on hubby’s income alone, Dayenu.

If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.

If I had to do laundry, clean, cook, pay bills, Dayenu.

If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.

If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.

If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu.  (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)

If I applied for SSI and got denied, Dayenu.  If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.

If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.

If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.

If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.

If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.

If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.

If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.

If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.

If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.

If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.

If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.

If I have to prepare for Purim, Dayenu.

If I have to prepare for Passover, Dayenu.

But put all of them together and you have one very tired work at home mommy.

Vent over.

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oh by the way…..

Oh I forgot to tell you all the upshot of Wilma’s IEP meeting and follow up conversations……. she’s not in a special ed class.  She’s no longer REALLY in the mainstream classroom.  She’s not sent off to an autism school.  They’re bending over backwards to create a schedule for her based on her needs.  The resource room and the intervention specialist (who works with first and second graders also) is her home base.  As behavior permits, she is brought into the mainstream classroom with an aide for 50% to 85% of every day.  She gets a LOT of individual attention (some of it from the occupational therapist which is interesting because I had been toying with the idea of begging for more OT…… hey!) and over the past few weeks since this new program has been initiated, her behavior at school has gotten MUCH MUCH better.  She earns the right to go be with the group and see her friends…. and the bulk of her academic work is done in very small groups without the overwhelming atmosphere.  Before she was being removed from the group when she was disruptive.  NOW she works well one on one or in small groups and then GETS to re-enter the classroom for part of each day.  She does all specials (art, gym, music, library, lunch, snack) with her class.  Rest time she does in the resource room because everyone else was resting and she was up at the computer reading over the teacher’s shoulder (poor teacher was constantly emailing me!).

Additionally I won the FBA argument.  I have a meeting on January 10th to sign the paperwork to get an FBA in place for her.  SO WHAT if her behavior has improved over the past few weeks.  LONG TERM, it’s gotten much worse from preschool to kindergarten.  I need a paper trail NOW to show that we’re doing all we can to keep her mainstreamed because things are only going to get harder once the first, second, third grade bullying starts.  Thankfully, there has been NO kindergarten bullying (yet?!).

Here comes winter break.  Two weeks of not being able to travel with them, not being able to take them anywhere by myself, not being able to move a load of laundry without Fred biting Wilma as soon as she ticks him off.  I’ve changed my meds.  I’ve changed Wilma’s meds.  I’m armed with lots of books, toys and games.  Let the fun begin.

IEPs are done!

We did IEPs on Monday!  I was in and out in two hours for both kids (since I had already had a three hour PRE IEP meeting).  Five goals with subgoals for Wilma, Three goals with subgoals for Fred, enough OT, PT, and speech to satisfy me but not so much that switching them to the therapy center is out of the question (I just love their school so darn much though…..).  I’m satisfied.

Potty training goals for both twins.

Kindergarten placement?  To be decided at the end of February when ETR results are back.  ETR testing started this week.  PLEASEEEEEEE  let there be the right program for both of them at ONE school with similar hours this next year.  PLEASE.

But here’s a funny poem because this nice Jewish family loves Xmas poems.  — about the IEP process—- for most fellow autism moms, it will garner some chuckles!

 

Anyone Have A Crystal Ball?

My twins’ school is GREAT.  For neurotypical kids it’s downright perfect and for kids with mild special needs it’s also really a nice program.  We love it, we won’t want to leave…. for what it OFFERS, it’s the best around and the people are so friendly and helpful and wonderful.

However.

It doesn’t offer true ABA— no public school around here does.  It doesn’t offer super intense behavior therapy.  It DOES offer an autism class with a varied approach, but the teacher (Fred is in that class– it’s his teacher) has a VERY laid back approach to potty training.  She feels the students will do it when they’re ready.  Calm down, he’ll be trained by the time he’s 30.  A very valid approach and I appreciate her point of view.  However, I want Fred sledgehammered more than that.  I need someone at school to do more than simply sit him on the potty and watch him NOT do anything in it and wet his pullup.  I want ABA to be part of his routine (even if it’s not the end-all be-all of the approach to teaching him).  There are five boys in his class.  As far as I know, none are potty trained, and only two (Fred included) are verbal.  What I would LOVE is a class in which there are potty trained kids for him to emulate, verbal kids for him to emulate, AND a more ABA – based approach.  MOST private ABA – based programs around here are out of reach financially.  But this week I found one that would be free.  EXCEPT— we’d be giving up public school completely and enrolling him solely in the ABA-based program which means we’d be taking a $20,000 scholarship and getting nothing for free from the district.  It’s a tough decision.  I’ll be seriously looking at the program next week.  The scholarship ($20,000) would completely pay for the program and he’d get his OT and ST as part of the program as well as ABA.  I don’t CARE if he can hold scissors or a pencil correctly (his OT at public school does)—- *I* care that he starts to have life skills necessary to (eventually) mainstream back into a neurotypical classroom.  *I* want OT to be working on pulling down pants, buttoning and unbuttoning pants buttons, VOIDING in the toilet rather than just sitting there (a TOUGH one, but one that CAN and SHOULD be done in school!).  Above all, I want potty training goals in his IEP.  The school doesn’t want to put them in there.  I’ve been told to push and fight the school.  I hate being THAT kind of parent.   Meeting with the current school on November 14th to start talking about IEP goals and options for next year.

As far as Wilma goes, I’m BASICALLY happy with her placement— she does okay in a mixed class of half neurotypical kids and half special ed kids.  BUT— I don’t know which kindergartens in our district offer that mix or IF any do.  If she’s not toilet trained by kindergarten, will she need to go into a self contained class?  If so, I may as well pull HER out and put HER in the ABA program too.  At any rate, if I do pull him, I’ll probably pull her too—- their separate schedules this year are already driving me batty and it’s only November.  If they both go to the ABA based school, they’ll BOTH be there from 9:30 to 2:30.  (I sense a workout, a manicure, a nap, some scrapbooking, and oh yeah— SOME *WORK* time in my future if I decide to go this route…..).  Does she NEED ABA?  In my opinion, not even half as much as her brother.  BUT— the center for autism has in writing that she needs it, so she’ll certainly get into the program… if she were my only child I don’t think I’d be concerned right now.  But I would still be fighting for potty training goals in her IEP too.  She’s potty conditioned now for certain.  *I* put her on the potty once an hour.  She pees.  If *I* don’t put her on in time, she simply wets herself.  Pullup, underpants, whatever— she doesn’t care— in fact, she thinks it’s funny.  “look mommy, I wet myself, ha ha ha”.  Consequences don’t matter.  Bribes don’t matter.  Trying to get more independence from her, but at least I can keep her dry at home (no success at school yet).  NO success with #2 yet.   But still, she’s light years ahead of her brother who sits on the potty saying ‘I will NOT make in the potty”!

Private ABA- based school?  Public school?  TOUGH decision.  If my kids were neurotypical, they’d be in a private Orthodox Jewish day school.   Where we live that isn’t an option for kids on the spectrum unless they’re toilet trained and can be mainstreamed with an aide.  (Years from now, maybe.  for now?  nope).

What’s right for my kids?  When I thought all ABA based programs were financially out of reach it was an easy decision.  Now that I have more knowledge it’s a tougher one.  Wish me luck!

Autism Awareness in the Jewish Community

For Orthodox Jews, it’s now “Chol HaMoed”, the time between the beginning days of Sukkos and the days of Shimini Atzeres and Simchas Torah.  There’s another Chol HaMoed between the beginning and ending days of Pesach (Passover).  Chol HaMoed is a holiday in that you’re supposed to dress up, enjoy time with family, and take off work.  It’s not the holiday (Chag) days where you’re not using the computer or car or phone, etc, but it’s not “regular” days either.  All Orthodox Jewish schools (where 95% of the kids in our community go) are closed.  So most of my friends are going with their kids to bouncy house places, big Sukkah parties, Chuck-E-Cheese (no it’s not kosher, they just go for the games, not the food), bowling, and mini golf type places.  The question in our community is not IF you’re doing something fun this week, it’s WHAT are you doing on Sunday?  On Monday?  On Tuesday?

Us?  Nothing.  I literally can’t take my kids ANYWHERE by myself anymore except places with a cart.  (Target, Walmart, the grocery store).  Even in those places, I’m 50% assured of a meltdown, a biting incident, or some screaming.  YES, I can take my kids to the zoo or the playground or a little kid park IF AND ONLY IF I have my husband or hired help with me.  AND a double stroller (which truly doesn’t fit the kids anymore).  AND a lot of prayers and perfect weather (I can’t name a lot of indoor places we can go, because of crowds…)

My friends with six kids can handle Chuck E Cheese by themselves even if their husband isn’t coming along.  Me?  Even WITH my husband super glued to one of the twins, I’m 100% sure there will be an incident (it’s crowded, and it’s indoors— double whammy).  So even WITH him, we limit our outings greatly.  And why should I hire paid help if we’re bound to leave an event early anyway?    We’re good with walks around the neighborhood (but only with my husband’s help), and occasional trips to the playground (ditto).  The weather this week is really iffy— I think we’re just staying home tomorrow.

I sort of feel like it’s become my job in our local Jewish community to explain why a family affected by autism can’t just get in the car one morning with the kids and say “hey, what should we do today??”.   Most of my friends don’t even get it.  When they see my kids they’re on their best behavior.  (because they see us when we’re taking a walk around the neighborhood which is 99% successful with my husband’s help— the Rosh HaShanah incident excluded).  I KNOW there will be a problem if we take them someplace crowded, someplace with music or lights, someplace with people, someplace indoors……  so I waver between “why bother” and “alright my kids need to have these experiences even if they SUCK— let’s just try”.

Six months ago, my kids weren’t even wonderful with walks around the neighborhood.  If I stopped to adjust my shoe, the screaming would ensue.  So the community gets to see my kids on their best behavior BECAUSE of all the occupational therapy they’ve done this year.

When there IS an incident in the community (my Rosh HaShanah walk, or just yesterday at a friends’ house for Shabbos lunch), people are super surprised at how quickly and intensely my kids change from Dr Jekyl to Mr Hyde— one sets off the other and it’s a horrific chain reaction.  MOSTLY people are extremely understanding and tell me I shouldn’t have to hide my kids or keep them home— I shouldn’t be embarrassed.  But there are the few who whisper right in front of me or behind my back……..”why would she take him to a Kiddush if she KNOWS he can’t handle it?”  or “what’s WRONG with those twins— they LOOK normal— it MUST be their parenting skills”… or “why does she let him bite her?”.   My personal favorite is those people who “care” who call during the week to tell us about an institution they heard about for kids with autism.  Great— you want me to send one or both of my kids to an institution?  First of all, just spend twenty four hours with them to see what life with them is truly like and see how hard we ARE trying.  THEN come up with the money.

At any rate, the kids do have school on Tuesday and Wednesday, since public school is their only option.  Public school doesn’t know from Chol HaMoed.  And that’s just fine because my twins are most successful when they’re separated.  He goes to school in the morning on tues and wed, and she goes in the afternoon.  As for me and when I get anything done, who cares.

At least I don’t have older, neurotypical children who are begging for the fun outings they know they’re missing, right?

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

 

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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.

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!