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

Archive for the ‘Playgrounds’ Category

Is It Possible?

Is it possible that the twins have stayed on the same meds for a while? Fred is on Risperdal and it’s working fairly well!  Wilma is on adderral and geodon (and all the poop meds— enemas, metamucil, colace, probiotics, etc) and….. it’s working fairly well!  Is it possible that Fred has had ONE toilet accident in the past many months (not counting night-time)?  Is it possible that Wilma (only so far through great scheduling and enema timing, etc) only has one accident every few weeks or so?  Is it possible that Fred is down to biting once a month?  Is it possible that Wilma is down to massive tantrumming once a week?  Is it possible that Wilma’s whining and impatience doesn’t bother me so much anymore BECAUSE things are so much easier in general?

And the BIG ONE—- -because the Jewish camps aren’t affordable (as if I could afford two camp tuitions AND two one on one aides) and the special needs camps aren’t affordable (the past four summers we sent them to the ONE affordable special needs camp on this side of town and it got worse and worse each summer—- AND they tripled their price— so now it’s babysitting, not camp— AND too expensive)——– I’m doing CAMP MOMMY and it’s going halfway decently?????

So far we’ve done playgrounds, science center, out to lunch, out to ice cream, spraypark, mall, chuck e cheese… and we built a swingset (they helped me drill!). cooking, baking— Wilma thinks challah dough is a great sensory activity. gonna put up a basketball hoop next week and then we’re getting either a trampoline or a pool (Wilma keeps changing her mind). later in the summer we’re doing piano lessons, and we’re keeping up the limudei kodesh tutoring. We’re down to 3 ABA sessions a week and up to 2 speech therapy sessions a week. Most of my work I’m doing after they’re in bed (and still making decent money, amazingly), but for a few hours a week they come with me to my local sm client and they play with the ipad and read while I work. On the docket still to do…… bowling, library, playground world, and lots of the area playgrounds. We’ve played a few games, read a bunch of books, done some coloring/painting/etc— and so far in the past 15 days have watched ONE dvd— my daughter is NOT good at sitting and watching, lol. TRYING to get them to ride bikes with training wheels, but our gross motor skills are kinda rocky and that’s definitely a non preferred activity (double meltdown fodder). They DO like their scooters though. Here’s a funny—– one twin got a TONNNNNN of summer homework and the other twin got none. So unfair— that’s the icky thing about them being in different schools.

And the zoo. how the HECK did I forget the zoo? and I’m getting braces again so soft food for mommy will be a theme— lol.

I hire help, I utilize my hubby who is off all summer (hello, I’m the only income all summer— you will play with kids when I wanna work, k?) and SOMEHOW, so far so….. GOOD?!?!

BARUCH HASHEM for ABA (6 hours a week for Wilma these days— still waiting priority on the waiver wait list for Fred) and the right meds…… and for these monsters getting older and more mature!

Also?  Also?   Wilma can walk a mile with no stroller now!  HA HA HA HA!!!  Every family walk does NOT involve her flopping down and refusing to move!  (as long as SHE picks the route).  Bye bye hypotonia— you don’t rule our lives anymore!  I might sell the fancy expensive special needs stroller soon!

 

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Kindergarten Placement? Still No Answer

My mom friends of neurotypical kids have all chosen their kids’ schools for next year.  My mom friends of MOST special needs kids have all had their kids placed for next year, whether in a Jewish school with a one on one aide, or in an appropriate public school class.

Our school district has autism units, multi-handicapped rooms, mainstream classrooms, and not much else.  For preschool, Wilma was in an integrated program with half neurotypical kids and half special needs kids.  That’s truly where she should remain for kindergarten.  From what I’m gathering, there hasn’t been a program like that for kindergarteners.  Special needs kids were either mainstreamable, or put in an autism unit or MH class.  So they’ve been thinking about and talking about starting a program like that for kindergarteners.  But it depends on money.  And enrollment.  And the price of tea in China.  Meanwhile, it’s mid May and though my twins have finished the ETR process, there has been no transition meeting yet and no placement.  I got an email today in response to my (rather pushy) email saying that they’re still deciding, nothing is certain yet.  It’s mid May.

Fred was in all three programs during the course of preschool— an MH class, then an integrated class (where he proceeded to bite EVERY student in the room over the course of the year, then an autism unit.  If he’s placed in an autism unit, he’ll be one of the higher functioning kids— he’s verbal and toilet training.  If he’s placed in an integrated class, he’s going to need a lot of extra assistance to make sure the structure of the class doesn’t completely overwhelm him (more than a few kids in the room and he turns into the tazmanian devil when his personal space is threatened).  I’m okay with them putting him in an integrated class to try it out.  Problem is that *IF* they do create this new integrated kindergarten in our district, it may just be ONE class, forcing Fred and Wilma to be in the same room.  That’s a WHOLEEEE other blog post.  However, I’m willing to try.  I just want to KNOW already.  Where are you putting my kids.  WHO will their teachers be.  What school?  What hours?  I want to know for certain that next year I won’t be meeting the school bus outside four times a day and that both kids will be in the same school for the same hours if at all possible.  I’ve paid my dues and deserve that so much.

I’ve thought about giving up on public school altogether and having them attend the Jewish day school with one on one aides but quite frankly, neither twin is ready for that.  Neither twin is ready to be THE special needs outcast in a class of neurotypical kids, with all the comments and stares that entails.  Ultimately, that IS my goal, but we’re just not there yet.  They still need the extra support of having lots of kids like them in their space.  My kids have a lot more in common with non Jewish kids with autism than they do with neurotypical Jewish kids.   Plus, with toilet training still at stake, I’m not sure most one on one aides will want to be dealing with constant potty accidents.  Public school HAS to.  Public school is mandated by the IEP and if they say my kids are high functioning enough to be kept within district and not sent out to special autism schools than by golly, they need to meet their needs.  Public school has OT, PT, and speech therapy right on site.  Public school has a sensory room, special educators, and a staff used to dealing with all types of special needs.

So for a while longer I sit patiently and when friends ask me where my kids are going in the fall I admit that I have NO idea.

The update:  BOTH twins are on abilify.  Wilma’s tantrums have decreased in length and frequency but are still mighty intense.  She no longer throws plates/cups/silverware at dinner.  She is willing to leave the house in the mornings without her brother.  When I ask her to do something she sometimes complies.  HUGE improvement.  For #1, she stays dry as long as I tell her when to go potty.  If I keep my mouth shut, she wets herself happily.  For #2, she is still 100% untrained and it always lands in the underpants.  I buy lots of extra underpants and hey– she never does #2 at school.  Fred’s abilify dose needs to be tweaked still— it tends to wear off before dinnertime so dinner is a challenge with him– it’s as if he’s DONE being asked to comply.  We ask him to eat, he turns on the tears—  how dare we require anything of him at the ungodly hour of 6:00 pm.  Instead of biting, he’s now licking.  He has no stranger anxiety anymore— at the playground he picks random mothers, climbs into their laps, and licks them on the lips.  That’s when I whisper that my kid has autism, and I see how understanding people can be.

The biggest update:  I am now able to take both twins to certain playgrounds by myself.  No huge double meltdowns at certain playgrounds anymore now that we’re on abilify.  We have a standing playdate every Monday morning with another mom and her autistic three year old and neurotypical four year old.  So far we have a nice budding friendship forming.

Two Week Winter Break

I was busy obsessing over thinking about the fact that my kids will have a two week break.  This Friday will be their last day of school until January 10th.  I physically and mentally CANNOT take them by myself most places (we have a system down pat for walmart and target— my kids LOVE CARTS).  The library?  Nope.  Playground?  Nope.  Restaurants?  SOMETIMES but I’d better be prepared for a mini meltdown.  (If you’ve ever seen us at the library or the playground, you’ve seen a MEGA meltdown.  A restaurant is usually a mini meltdown which is the worst meltdown ever for a neurotypical kid— for my kids, it’s a regular day.)  So I CAN take them to restaurants, though I don’t love it.

My husband has to work.  I have to work too, but hey, as long as I can make a full time income after the kiddos go to bed, then my daytime has to be the autism battle zone.  Forget the laundry and the cooking.

SSI denied us so we don’t have play money to get respite.  Respite denied us “extra” funds even though in the board of developmental disabilities paperwork are all the reports from our early childhood intervention specialist stating that taking them places by myself is my biggest problem.  I have ZERO issues taking either kid with me anywhere— yes, there are meltdowns, but no safety issues and nobody except me gets bitten— I use my strategies and I can get out the door without anyone getting hurt.  But put me with both kids and as soon as Wilma decides to flop and refuse to move, Fred turns into a tazmanian devil and bites anyone near him—- I don’t have enough hands to keep Wilma from deciding to run off while I pry Fred off an unsuspecting library patron.  I need both of my hands on both children at that moment.  I’m actually the only person I know who took a rep from the board of developmental disabilities to the playground with me, and Fred’s special ed teacher to the library with me— SO THAT we could come up with strategies SO THAT eventually I can go places without hiring a babysitter for one or both of my children.

Other families during winter break travel or go to museums or special events or parties.  Yeah, we’ll be home.  Want to come over for a play date?

This post sums it up SO nicely— THIS is why you don’t see me and my children out and about so often.

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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