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

Archive for the ‘Walking’ 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!

 

April update

I don’t blog enough.  Mostly because 100% of my time is spent coordinating the psychologist, the developmental pediatrician, the outreach worker from the Center for Autism, the behavior specialist from the county board of DD, the intervention specialists at both schools (IEPs, FBAs, constant emails), and now a new psychiatrist, along with the usual regular doctors and dentists and errands and chores and such.  The other 100% of my time is spent dealing with behaviors and actually working with my kids (or playing with them, or reading to them, or wiping their butts….).  The other 100% of my time is spent working for an income.  300% of my time is accounted for, leaving no time for blogging.  My ideal would be to keep this site updated daily, but…. yeah.

I was going to post about how one twin had a horrific enco day two days ago (10+ poops in her underpants— ok after the first couple it was pullups the rest of the day, but I still had to buy yet another pack of underpants) and with the other twin SIBS (self injurious behaviors— he bites himself)  are back (4 times in the past week) and we had some massive meltdowns, but nah, I’d rather point out happy stuff about the walk and the movie from last week. Two steps back, half a step forward…… spring break till monday—- there will be at least one GOOD day between now and Monday- I’m determined.

So here’s the good news:

Taking them to their first movie (Muppets Most Wanted) was great—- everytime they lost interest we let them play with an ipad or phone for a few minutes. or go to the bathroom. or play an arcade game. I left the movie at least 3 times that I remember– but MOST of the time we were in the theater and watching. well they watched 2 thirds of it between all the ipad breaks. I loved when Wilma stood up at the beginning and said “I don’t want to watch this anymore” but then with LOTS of encouragement made it through the whole darn thing. We were the the only ones watching that movie so we took stand up and stretch breaks too. They were OKAY with the lights and sound— 6 months ago it would have been a massive problem. They both lost it a little right when we got home– no shock there. As for the movie, I think I liked it more than the kids did—- spoiler alert— don’t read on if you don’t want to know……………. Lady Gaga, Tina Fey, Salma Hayeck, Josh Groban—- LOVED all the cameos.

Right on the heels of the movie theater trip I have more good news……… most of you don’t know that EVERY SINGLE TIME we take a walk together as a family (and it has to be all 4 of us because the last time I took a walk alone with the kids it was seriously unsafe when he went into multibite mode and I didn’t have enough hands to put her in the stroller while he was off biting strangers because she lay down and refused to walk in the middle of the street— never mind…..)—- EVERY SINGLE TIME we take a walk together as a family lately, it’s gone well— up until it hasn’t. That is, we walk, we stop and talk to friends, the kids have little mini dramas over who gets to sit in the one special needs stroller because even though only one kid has a physical problem with walking a distance, the other one just falls apart from overstimulation….. as we talk to people and the kids play it’s great— and then whenever we’re almost home whether it’s 20 minutes in, or an hour in, THEN the double meltdown begins in all it’s glory and the biting, hitting, screaming ensues. EVERY walk ends up with us walking in sweating and 3 out of the 4 of us in tears (hubby is a man— no crying there– lol). We keep trying to take a walk together because it goes so well for MOST of the walk and we know that SOMEDAY we’ll have a walk that is 100% fine. TODAY IT WAS 100% fine. No permanent scars here, folks. Could be Wilma’s med adjustment, the new supplements we’ve added, the behavior charting…… all I know is that we took a walk together as a family and smiled the whole time— THIS is news. May this be a beautiful spring/summer with lots of GOOD family walks!

Twins Are Ready To Go To Shul…. But How?

I just posted this in a facebook group for Orthodox Jewish moms of “special” children. I’d love the opinions of the fellow Jews reading this….. how would you handle shul if you were me?

opinions please! My twins turn 7 tomorrow (!) and are very high functioning except for severe behaviors— fully verbal and cognitively fine— both have autism. One twin will start receiving the Ohio SELF waiver in February— we’ll be using much of it for therapy insurance won’t cover and some to pay for a DECENT summer day camp (the only special needs camp we’ve been able to afford has gotten much suckier— a JEWISH special needs camp would be ideal, but this is Ohio….). But we’ll have more money we can use to have a certified person accompany me and the kids in the community— most places I cannot take both twins by myself because of severe and dangerous behaviors. We haven’t been attending shul at all. My twins’ only exposure to shul has been on Simchas Torah when Abba goes to a hashkama minyan, comes back to get us, and we go do the dancing. We’re safe at shul with one adult for each twin. So being that my kids are very cognitively aware and are learning davening and do have many many moments each day which are 100% FINE, but being that if I were to take them both to shul by myself, as soon as one twin breaks down I’d need to take them both home and that’s physically impossible to do due to the unpredictability of severe behaviors (when I walk with them both during a double meltdown, strangers get bitten or get shoes thrown at them)—— I’d like to take someone to shul with me. I don’t want my husband to need to leave shul or be disturbed at all. As soon as I hear my son melt down on the men’s side I need my husband to be able to walk him outside and have me or my helper meet him and take him home. If my daughter melts down I need to have my helper or myself take her home. If I can do this, we can finally enjoy shul as a family, I believe. We’d do 20 minutes, then 40….. I wouldn’t force 3 hours on 7 year olds— but severe behaviors could happen 10 minutes in with one twin or both and I physically can’t take them both there or home. So here’s my question——- do I hire a Jew or a non Jew? A non Jew isn’t allowed into an Orthodox shul. A Jew would need to drive on Shabbos to get to us. An Orthodox Jew wouldn’t be certified to be able to be paid by this waiver to help us— we have to choose from a list of people…… do I ask the Rav for a heter to bring a non Jewish worker into shul? Do I ask for a heter to hire a Jew even though that means the Jew would drive? It’s a strange conundrum. For the rest of the week I can hire whomever but how do I handle Shabbos and Yom Tov knowing that’s when I need help the very most? (the last time I took them both for a walk by myself we were all stuck crying for half an hour until someone went into shul to get my husband who did not enjoy having his davening interrupted to help get them safely home). **OR** do I hire a non Jew to stay with one twin at home while I take the other twin to shul and just switch twins each week? And if I go that route, what are the rules of hiring a non Jew to work on Shabbos and Yom Tov? I know other people in this group have non Jewish helpers on Shabbos but I haven’t seen anyone yet have this shul conundrum……. thoughts?

Pediatrician- Home Base

My neurotypical mom friends are talking about their five year old’s well visits and it usually goes something like this:  “once in a while he’s still having accidents at night, so we talked about that”.

Um, yeah.  We’re not even close to fully daytime trained let alone thinking about night-time training.

At my twins’ well visit this morning we discussed handicapped placards (I now have a prescription because of all the times Wilma SITS in the middle of the parking lot refusing to move and Fred bites her, bites me, and cars stop and honk.  I’m alone with them holding both their hands and sweating.  Fun times.).

We discussed wheelchairs.  Wilma is 54 pounds and most normal strollers go to 55 pounds.  I now have a prescription for a wheelchair or special needs pushchair due to her autism and hypotonia—- there is no way I can go most places with her without a stroller (or now, her fancy schmancy chair that, to get, I’ll have to call insurance, call her neurologist, go to a seating clinic, blah blah blah).  DAILY in the middle of wherever we are, she’ll sit down and REFUSE. TO. MOVE.  No amount of bribing helps.  For that matter, when we take family walks with the double stroller (which we’ve truly outgrown), Fred insists on sitting.  If we get rid of the double stroller and take just Wilma’s wheelchair, my hope is that Fred can use it for a BIT of each walk while Wilma walks, and Wilma can use it when she does her floppy act.  He can get used to walking farther and farther distances because physically HE is completely capable.  She is far more hypotonic than he is.

Any questions about eating or sleeping?  Nope.  Any medical issues at all?  Nope, not really.  Just questions about handicapped placards and wheelchairs.  Hidden disabilities SUCK.  All these moms of neurotypical kids look at my kids who at age 5 can read (one can write), handle a general ed curriculum (one knows third grade math!) and wonder why we’re always off to the neurologist and the psychiatrist.

Fellow special needs moms are telling me not to bother bringing up the toilet training issues, the wheelchair stuff, and generally anything out of the ordinary with the pediatrician.  Just take that to the neurologist and psychiatrist.  I see the pediatrician as being home base for all of our medical, developmental, and behavioral issues.  I like that she has EVERYTHING in her files and when I call to ask a quick question she knows the entire history of each child.

So I’ve got the NT moms thinking I’m nuts for over-doctoring my kids and the SN mommies thinking I’m nuts for trusting my pediatrician so much.  Yep I’m nuts.   And a little sad that though I’m INCREDIBLY EXCITED that I went with both twins BY MYSELF this morning to the pediatrician and nobody got bitten (THANK YOU ABILIFY!)……  I didn’t get to talk about normal five year old developmental stuff, but instead dove deep into the special needs world of handicapped placards and wheelchairs.

We Have a New Dentist

I have a happy post.

Our dentist whom we LOVE can’t handle my kids anymore.  He doesn’t offer sedation for children.  At all.  Take my two autistic four year olds, put them in his small office with no laughing gas, and the whole building is in for a rude awakening.  My husband and I will still go to him- he’s wonderful.  But my kids need to be knocked over the head with a frying pan sedation.

So I called every dental office listed in our local autism directory— most of them DO have experience with patients with autism, but put them all completely under in a surgical atmosphere.  My kids don’t have cavities or dental issues— they just need cleanings— a little sedation is fine, thanks.

This was a disaster waiting to happen…..

1)  I couldn’t get the twins their cleanings right away— they needed us to have a first appointment (consult) first so I have to take them AND take them back…..

2)  It’s in a ridiculous campus of buildings — had I not studied the campus map on the internet I would have been ridiculously lost.

3)  Parking is a nightmare– not for normal people, but for a mom with two behaviorally challenged four year olds?  ugh.

4)  I don’t have a double stroller big enough for these people that fits in my car.  These people were going to HAVE to walk.  Or at least one of them— I brought a single stroller with me.

5)  It’s the dentist.  Nuff said.

 

But……. dance with joy with me please.

1)  I found the building without driving around and around and around.

2)  Valet parking, usually reserved for labor and delivery patients, agreed to valet my car.  Worth every penny.

3)  Both kids eagerly walked to the bathroom where Wilma and I went potty and Fred got a diaper change and then eagerly walked with me to the office.

4)  While I filled out 15 minutes worth of paperwork (no joke), both kids quietly and happily watched Spongebob on the tv.  Totally amazing in and of itself.

5)  When we walked back and Fred screamed “oh no!”  he got over it very quickly and walked to a corner and pooped.  If he’s comfy enough in the office to poop immediately, it’s a good sign.

6)  They patiently made it through the teeth counting and poking around and all my questions.  A Bit of screaming, but that’s to be expected.

7)  They will give us FREE sedation at each appointment.  Our insurance doesn’t cover it but they won’t charge us.  No kidding?

8)  We left with toothbrushes, stickers, and appointments for cleaning for two separate Mondays in Jan and Feb (I’ll leave the opposite twin home with a sitter).

9)  They went back with me to the bathroom where Fred got another diaper change.

10) They WALKED to the lobby— I never unfolded the stroller— Wilma did NOT flop down, refuse to move, scream, whine, or cry.

11)  The valet drove the car up, I paid and tipped, and he STAYED with me while I got both kids in carseats and HE put the stroller in the trunk.

 

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12)  Nobody was crying or screaming, so we went to target next. Wilma picked out more panties.  Why?  Because starting next Friday the 23rd NO MORE PULLUPS except at night.  Her teachers agree that over winter break we should do panties all the time and then when she comes back to school just send lots of panties and changes of clothes and let’s hope for the best— she’s about 80% trained now—– NO #2 in the potty yet, and NO #1 in the potty unless I tell her to (she never tells me), but I’m telling her enough that she’s staying dry ENOUGH.

 

I’m in shock!  This was the first time in ages that I’ve had a successful trip out with BOTH kids that wasn’t at walmart or target (where I can throw them in the cart).  Not only was it successful, it was the DENTIST– which could have been soooooo horrific.  He remembered past dentist appointments and freaked a little, but calmed down so incredibly quickly.  GO FRED AND WILMA!

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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?

I Promise Not To Take a A Walk Again….

…. with my children…. without help.

It was an innocent thought.  Three days in a row of no television, ipad, computer, telephone, or car…..  there are only so many hours we can play with the same books and toys, right?  So let’s take a walk!

For the past many years I’ve always done it whenever there’s been a Shabbos (Sabbath) or Yom Tov (Jewish holiday) with nice weather.  For a one day span, Shabbos, we’re able to stay home without too much trouble— if we get invited out for a lunch meal, my husband comes home to help get the kids to where we’re going.  But for three days in a row— this year two days of Rosh HaShanah backed up into Shabbos and soon two days of Sukkos will back up into Shabbos and then Shimini Atzeres/ Simchas Torah will back up into Shabbos…… picture an autistic kid with no access to an ipad or a computer game or anything with buttons for one day (or playdoh, or crayons)— now multiply it by three days— now multiply it by two children— we need a walk!

I had already crossed library, playground, and a bunch of other fun places off the list I can physically take my children by myself without someone getting bitten, kicked, hit, or tackled.  But I was still willing, until yesterday, to pile them into the double stroller (which really doesn’t fit my almost 5 year olds) and walk on.  Go without the stroller?  No, I know better than that.  Wilma flops down on the sidewalk five streets from home and refuses to get up.  That causes Fred to step on her, scream, and bite her.  So…. yes, they’re able to walk for a bit as long as I have the stroller with me.  As soon as she melts the teeniest bit, I pick her up, put her in the stroller, and walk on.  Until yesterday.  The kids have outsmarted me.  I can no longer physically put her in the stroller and lock her into the seatbelt with one hand while keeping him from biting her with the other hand.  Because the stroller really doesn’t fit, it takes both my hands and a ton of strength to slam her into the seat and get the seatbelt on her (with no seatbelt, she melts face down to the sidewalk screaming– she WILL. NOT. WALK.  when she’s in meltdown mode).   I can do that when I’m alone with her.  But while he is in multi-bite mode (which is ONLY caused lately by her meltdowns), I literally don’t have enough hands.

So picture us a few streets from home in the middle of a lovely walk where I’ve just told Wilma, no she may NOT go into the synagogue.  Meltdown.  (they behave BEAUTIFULLY until they don’t and I can’t predict how quickly or intensely it’s coming).  I calmly wait it out while she is facedown on the sidewalk and I’ve locked him into the stroller to prevent him from biting her.  So far so good.  Until she doesn’t get up.  And keeps screaming.  And bothering people in nearby homes.  And the synagogue.  And neighboring synagogues.  And neighboring countries.  So I attempt to lift her into the stroller.  I can’t do it because he turns around to bite her.  If I take him out of the stroller, he’ll run into the street.  So I hold her for a minute, try to talk him down and try again.  And again.  The more I try to shovel her 45 pound limp screaming body into the stroller, the more he tries to bite her.

By now, here comes everyone.  The old men at the synagogue door opening the door every 30 seconds to stare at me.  That’s truly helpful.  The lady who comes by to tell me “you can’t handle those two by yourself— you need help!”.  I said “thank you for reminding me of that”.    We were offered candy approximately fifteen times.  Sure— my kids are in the middle of a massive meltdown– you think my parenting style should be to reward it with candy?  So with one hand I’m locking Wilma into her seat— with the other hand I’m trying to keep Fred from biting a friend of mine who thankfully came along and WAS a big help.  With the third hand I’m thanking but waving away all the candy offers.  Once both kids were in seatbelts I TRIED to move the stroller.  I couldn’t.  Wilma’s feet were firmly planted on the ground.  She was standing up while in her five point harness.  I tried to move her feet— Fred bit her again (some of the bite marks on her neck and back are minor and some are all sorts of fun colors).  At this point my friend sent a boy into the men’s section at the synagogue to grab my husband, and I, defeated and relieved, burst into tears.  Enough, I had it.  He was strong enough to keep the stroller moving depsite her feet and his teeth and while the stroller was moving they both calmed down.  He dumped them in the house, went back to synagogue and I could say at least I TRIED to spend time with my kids alone without a car outside the house.  Never again.  For Yom Kippur I’m getting a babysitter to help me take them for a walk in two separate strollers— or if I don’t buy another single stroller by then, to help me walk the one who’s willing to walk, far away from the one who’s being pushed.   My friends who have six, seven, eight or nine neurotypical kids don’t hire babysitters.  Me, I’ve got two kids and I can’t leave the house without a helper.  It’s not fair.

To make this week even better, I finally got the official paperwork denying SSI.  I knew we weren’t going to get it— we don’t get anything— we “make too much money” for free health insurance or WIC or food stamps or anything like that that everyone knows we’re having financial trouble because I don’t have enough time to work many hours keeps telling us to apply for (great sentence but I don’t care– it’s my blog and I can be grammatically incorrect if I wanna)…….   but I was kind of hoping that we had a shot at SSI.  Nope—- THOSE hours of paperwork are now wasted and I’m back to turning my whole life upside down for kids who aren’t potty trained, aren’t in school a full day, need lots of individualized appointments and therapies, AND I don’t have time to work enough hours to provide what we need because their school hours overlap for eight hours a week.

In short, if you see me,

don’t tell me to apply for WIC, food stamps, medicaid, or SSI.  I did and was denied.  Didn’t even WANT to apply, but did anyway.

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don’t tell me I need more help.  I KNOW THAT.

don’t tell me I need a vacation.  I know that too.  Got a qualified babysitter and some money for me?  Now we’re talking.

don’t offer us candy.  EVER.  If my kids deserve candy once in a blue moon, I’ll be the one to decide when and it WON’T be mid meltdown.

don’t tell me that since I can’t handle my kids I should send one to an institution.  I’m doing the best I can.

 

And I’ll never take a walk with them alone again.  ok?

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