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

Archive for the ‘Abilify’ Category

Agression Regression

yet again we JUST BARELY escaped the hospital and the police because of Fred.  By sheer LUCK the neighbors didn’t call the police and by sheer response blocking experience we didn’t land in the hospital but we have some shiny new bruises. Hubby has a loose tooth and will call the dentist in the morning.  No  dental insurance — if it’s going to be a crown it will be about $1000 we don’t have, right?  In addition—-  Fred bit my husband’s arm down to the bone—- an arm/hand surgeon  said there isn’t nerve damage but there might be bone damage.  There were many hours that he had no feeling in his hand but feeling is coming back now so I’m optimistic there.

It was only an hour but it was a VERY LONG HOUR when before covid craziness the worst of the worst was down to maybe 20 minutes two times a week– now it’s EVERY day for at least 20 minutes but tonight an hour. I’m dripping in sweat. Some of my friends in an autism moms facebook group go through this for MORE than an hour— every day—- I just….. ugh…….. Wilma who ALSO has autism was crying her eyes out saying how unfair it is and how she wants to run away.

Fred is now on  Depakote, straterra, tenex and Lexapro.  (ALMOST as many meds as Wilma!) He was at his best at the beginning of the abilify and Risperdal days (before he was on the largest dosages for his weight and they each stopped working).  So— back  on the meddy go round we go.  I guess we’re going back on one of those.  This psych just loves our family.

At last count, the four of us are on  Fred (4), Wilma (5), me (4), hubby (6) prescriptions every day—- and some randomly like all my post surgery meds for the 3 surgeries I had in the past 6 months.  I should really open a pharmacy.

Autism is kicking my ass lately.

Spring 2014 update

It’s been a while….

Wilma is on 6 mg of abilify and 30 mg of adderall and doing AMAZINGLY both at home and at school. At school, there are virtually NO more episodes of flopping to the ground and screaming her head off. At home, there are entire days with NO episodes of ODD. The adhd has disappeared into adderall oblivion and homework is a breeze. Her major episodes are all ODD related and down to a few times a week rather than a few times a day. She does pick her fingers until they bleed on purpose and get blood all over herself on purpose (she even puts it on the doorposts right before Passover— irony!), but that’s SMALL potatoes compared to the days of rolling her in a stroller screaming out of the library, being kicked out of Chuckee Cheese, etc. I’m still terrified to take them most places by myself but that’s from remembering history more than today’s reality… I think. But I don’t want to put a mahooey on it. AND—- a majority of her poops land in the toilet due to great laxative timing, and a teeny bit of command of her nerve endings! She poops in her underwear but just a little bit— tells me immediately and then I can put her on the toilet and she does the rest– huge improvement! A couple of times I’ve even caught her fidgeting and told her to try to poop— CLEAN underpants and an ENTIRE bowel movement in the toilet!

I credit our county board rep for a lot of the improvement— she’s helping me chart behaviors and target particular times of day and particular triggers. Of the Center for Autism’s outreach program, the psychologist, the developmental pediatrician, and the county board rep, she’s probably the most helpful— it’s taken a long time to gather this dream team.

This month’s improvements: Chuckee Cheese got rid of some games and brought in some new ones. She didn’t flop on the ground, scream her head off, and throw her shoes at strangers. She simply…. made friends with a new game. Amazing. We had stopped buying soda for a while. We had some this week—- she wanted some after dinner tonight. I asked her to wait until she was finished with her chicken. NO plates went flying. No forks went flying. Seriously, it looked like a typical dinner with typical children. There are entire days with no behaviors worth writing down. There have been days with 83 to 120 minutes worth of severe behaviors. But lately—- 20 minutes over the course of a day is typical for us (on a weekday when they’re mostly at school anyway, but STILL!)

Fred is on 10 mg of abilify and OFF the zoloft and doing better at home. He’s doing better at home simply because WILMA is doing better at home. At home, I don’t give him a lot of expectations. He’s had a long day at school. As long as he does his homework and goes to his after school activities, I pretty much let him have at least a half hour of ipad or computer time a day and that keeps him fairly calm until Wilma starts up. At school, however, things have gotten significantly worse. It all started during the zoloft trial period, but it’s continued and through putting together the FBA and changing up his behavior plan at school and bringing in the county board rep to observe him at school, I’m starting to wonder whether to ask for a placement change (self contained class), a one on one aide, or a different (read– expensive autism based) placement. I LOVE this district and don’t want to come in with a lawyer and beg for what costs money….. they’re trying so hard and they love him so much. But he’s biting, kicking, and hitting. He’s spending a chunk of each day screaming. The county board rep arrives to observe him and hears his screams from outside the building. It’s heartbreaking. He’s calming down at home, but so overwhelmed at school. Academically he’s fine. Socially and emotionally, he’s having such a much rougher year than last year.

Today, he fell at school first thing in the morning and bled all over his pants. They called me to come take a peek and two teachers and I all agreed that maybe he might need one stitch. So I took him to the hospital. Two episodes of Sesame Street, a green popsicle, and 3 hours later, he’s got 4 stitches. Took him back to school for the last hour of the day, came home and finally ate my breakfast at 3:00 pm after filling his pain med and antibiotic ointment scrips. Fun times.

PS— Wilma’s medicaid waiver was approved on January 29th. It’s now April 1st and we still haven’t been approved to begin services (we want ABA!). Meanwhile her behaviors have improved somewhat—- maybe if they make us wait long enough, she’ll behave appropriately 100% of the time. hah.

First Grade Fun

It’s time for the first grade update.

Home is still hard. REALLY REALLY hard. She ticks him off on purpose by flopping on the ground and refusing to do what I ask (including using the toilet—- yeah I’m such a mean mom asking her to go potty). He screams and goes into multi-bite mode. I send him to the playroom to calm down. He screams from there. She still refuses to comply. And on and on. It used to be about toileting AND dinner AND getting on the phone with the grandparents AND homework but now homework is off the list. For whatever reason, homework is going well for Wilma this year. There is a LOT more homework in first grade (at least a half hour every day) but Wilma is calmy complying with homework time. Woo friggin HOO! Fred is having a REALLY rough time with the repetition of homework and the forced writing (he hates being told to write), and anxiety attacks over coming up with a sentence about a book he read, etc. But at least for Wilma, homework is okay.

Fitting homework in is hard. Lots of after school therapy and appointments, dinner, and I can’t seem to get a handle on helping them both at the same time so I usually help Wilma first and THEN help Fred while Wilma plays on the computer or ipad. On a non appointment/therapy day, this works but on other days I HAVE to help them together and it’s hard.

But school? School is going BEAUTIFULLY this year. We have Wilma’s increased adderall dosage to thank for her success. She is now on 5mg abilify and 30 mg adderall. We have finally found the adderall sweet spot for her and her adhd is under control. WHEW. Her oppositional defiance disorder and autism are definitely NOT under control. And don’t even ask about the encopresis. But the adhd? SO much better. And Fred? Well aside from biting the teacher and doing a lot of screaming and crying, he’s academically doing just fine. Socially? eh. Anxiety wise? eh. But he loves school and they’re working well with him and the other kids are accepting of him. Aside from a lack of ABA, I LOVE both of their schools. I really do. Oh, and aside from a lack of Judaism. At this point I’m getting less hopeful that they’ll someday be in Jewish day schools and more accepting that perhaps our place is in public school.

Monday, the friendship circle girls come after school— that will start this week. Wednesday, they’ll go to an activity club run by the Bikkur Cholim house— that will also start this week. Thursday is speech therapy. So our only non appointment/therapy day will be Tuesdays, but I met with a new therapist today who might be able to work with them on Tuesdays so we’ll see. Meanwhile whenever the SELF waiver comes through and we have ABA funding our entire schedule will have to change in a big way.

First grade is fun. Writing sentences, learning addition and subtraction (well for Wilma anyway. Fred is doing fractions, decimals, and percentages with his teacher— thankfully they’re willing to do that for him because his high anxiety moments include being asked to do math at the level where he’s supposed to be– keep his mind moving, and you keep his anxiety at bay– they’ve learned that.)

Wilma is on abilify and adderall. Fred is cutting down on the abilify and going up on the zoloft (did I mention we took him off focalin and put him on zoloft?)—– doc wants to get him off abilify all together with a huge dose of zoloft— good luck, doc. we’ll see.

Toilet training/ megacolon/ encopresis update to come over the weekend or next week—- I’m just…. BUSY!

Is Summer Over Yet?

In the past few weeks here’s what you’ve missed because I’ve been lazy about blogging:

Wilma had an autistic meltdown on the floor of Chuck E. Cheese, screaming her head off and throwing her shoes at people….. she got kicked out.  “you need to get her out of here— she’s disturbing other patrons”.  thanks.   And no, her brother was NOT reacting calmly—- I response blocked 18 bites– go me.  Hoping hubby doesn’t need the hospital for his leg she kicked—- if he needs a blood blister drained, we don’t have health insurance.

the kids’ new health insurance needed a pre-authorization for Fred’s $800 a month med from which he can’t be dumped—- if we were to take him off, he’d seriously need to be weaned.  Last week they gave us enough pills for free to make it through Tues.  Monday I met face to face with the doc who said she took care of the pre-authorization.  Pharmacy still couldn’t put it through and gave us ONE more pill.  Called the doc again and it got straightened out but I was thinking…..  If Fred has to stop taking the medication that is essentially keeping him out of in-patient… cold turkey…. I’ll be inviting the doctor, a rep from the health insurance, and a rep from the pharmacy to come babysit him while he goes cold turkey off the med while I go vacation in Aruba.  If he does go in-patient, that might bump us up on the waiting list for funding for real behavior therapy- hmmm.  Can I scream yet?

got the car fixed to the tune of $765.80.  knock sensor, oxygen sensor, throttle position sensor…..  For a 1999 car, I guess it’s not too shabby.  still only 46,000 miles on it.  $80 of it was from rodents chewing the wires—- yet again.  Rodents love going underneath our cars.  The good news is that the other car (brand spankin new) will need nothing for quite some time because there are only 800 miles on that car.  The other good news is that we paid $300  and the other $465.80 in 2 weeks so I have a couple of weeks leeway not to have to bust out all that dough at once.

my one bit of alone time between august 2nd and august 29th— a trip by myself with no kids—- to the lawyer downtown.  He convinced me not to sue anyone.  hooray.  the kids’ insurance company switched to one that has a weird clause in it that a few cases have won in terms of parents being able to get ABA for their kids in severe situations.  So I was meeting with a lawyer who convinced me that waiver would be an easier route to travel because winning those cases is not a clearly defined route and has lots of complications.   There are a few different waivers.  One has a 10 year waiting list…. but another newer waiver, “SELF”, MIGHT be quicker.  So he gave me the number of a person to call who might know how quick.  Meanwhile we’re already on the SELF list.  If SELF rejects us or takes ten years, then we might be able to sue the insurance company.  Woo friggin hoo.   He was surprised we weren’t suing the district but he agreed that we wouldn’t be able to get it through them anyway, and he said I’m one of the few parents he’s met with who is basically HAPPY with the public school district (aside from the lack of behavioral therapy!).  He said we can get the SELF waiver more quickly if there’s an emergency.

Anyhoo, center for autism demands we do ABA.  District says we don’t need it.  Center for Autism sends us to a lawyer.  Lawyer has us call the board of developmental disabilities.  Board of DD is probably going to want me to sue the district.  Excuse me, I’m covered in red tape.

We got a hamster.  Wilma adores him, Fred couldn’t care less.

My Wii broke and is unsalvageable so I might just have to join a gym— otherwise my only workout option is a realllly old and squeaky elliptical machine in the basement.

I spent 20 hours in the past 2 weeks fixing my ipad.

ok, you’re all caught up.  School starts August 29th.  Till then, I’m in survival mode……  camp is long over.

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.

Mommy can’t get sick

Last week I had my fourth episode of a chronic health problem I’ve had since 2001.  The episodes can last from one to four weeks and scare the bejeepers out of me because losing complete control of how my body feels is terrifying at ANY time… but the last two episodes have happened while I’ve been a mother.  Nightmares about being admitted to the hospital for medication management and further testing have been the bright spot of this past week.  Thankfully, I was scheduled to have a doctor appointment yesterday before Shabbos for another health issue (super high blood pressure—- I’ve already BEEN on blood pressure meds for years now) so I simply came in showing all the classic symptoms (of the chronic health problem that I’m not sure I wish to share here) and begged for help.  With a few tweaks of my medications (I’m now on four meds), I felt normal last night for the first time in WEEKS.  I am SUPER lucky that the med change worked and that I’m now on the upswing.  The silver lining is that I lost some weight (from a lot of vomiting and no appetite), and that my pharmacist, when I explained what I had been going through, gave me a major discount on meds (no, of course we don’t have health insurance) and a big hug.

Stress doesn’t help my health at all, and to be perfectly honest, these kids are the light of my life— and a cause of a SUPER amount of stress.  I spend more time filling out paperwork/calling/meeting with people from the board of developmental disabilities, our local autism center, our local behavioral center, IEP meetings….. than I do with my income producing WORK.  I gave SERIOUS thought this week to giving up on one or the other.  If I give up on all the stuff I’m doing for the kids— I cancel the outreach from the board of dd…. I cancel the outreach, psych, and therapy from the behavior center…. I cancel the outreach from the autism center…….. and I just simply let public school do with them what they do and not run to therapies every day after school…… I’ll have more time to work.  OR…. if I stop working completely and just focus on being a stay at home mom….. well that’s out of the question because my husband makes about a third of what we need to make just to be middle class— he loves his job, but is horrifically underpaid.  There are no easy answers but I’ll just keep muddling along doing what I can and always knowing it’s not good enough.

Meanwhile we had a med change for Wilma this week.  AGAIN.  She is now on Vyvanse instead of Focalin.  And the abilify has been upped again.  By golly, we might be starting to see changes!  Then again she had a half hour meltdown today after cheating at Chutes and Ladders (who CHEATS at Chutes and Ladders?  I calmly said she needed to move to where she was supposed to or I’d put the game away—- so I started to put the game away and well….. my husband didn’t get his Shabbos nap).  But this was the ONLY meltdown in the past 3 days.  SERIOUSLY!  PRAYING that med changes for Wilma and myself are helping us turn a corner.

Medication update

Fred is on 15 mg of abilify.  Without Wilma around, he’s doing ok.  If he were an only child we’d be satisfied.  He still shows lots of signs of autism and plenty of anxiety, but his anxiety is manageable— he freaks out, bites, screams, and it’s over.  His episodes are frequent, but short lived.  Unfortunately he comes home with the daily bite reports and his teacher and IS/ISA still aren’t yet interested in pursuing an FBA and I don’t yet have the balls to demand it.

When he’s with Wilma, all hell breaks loose.
Wilma is now on 1 mg of abilify and 5 mg of focalin.  Today is day 2 of focalin and I don’t know if the focalin is making her SO MUCH WORSE or if she’s just had two realllllllly bad days.  She kicked my husband so hard tonight that we considered the ER.  With ice, he’s limping and no longer yelping in pain, so nothing’s broken.  Focalin is supposed to make her focus, pay attention, help with impulse control…… yeah.  right.

 

Such a bad mommy blogger…..

It’s been far too long.  But I’ve been launching a new business website, and now I have three businesses which are all vying for my attention.  My main business, plus my two side businesses, one of which I did some extra training and moved up a level last week.   I’d LOVE to be the special needs mommy who does laundry, cooks, bakes, pays bills, and organizes while the kids are in school, but even with full day kindergarten my days are still frantic and hectic because I need to do all that stuff PLUS tackle all the business stuff.  PLUS email teachers.  EVERY.  Single.  Day.  Other autism mommies, are you getting the DAILY emails?  Doesn’t it get old?  It’s always something…..

Wilma is not allowed to come on field trips without a parent accompanying her.  “We cannot support her behaviors in an open environment”.   So there’s always a field trip (#2 is coming up next Wednesday and it’s only early October) and if I don’t come, she’ll give me hell because she won’t be allowed to go.  So erev Yom Kippur (for the non Jews, that’s the day before a Jewish holiday— big cooking day)— I was at the zoo all day.  Next Wednesday, it’s the fruit farm.  Is it legal for them to require a parent just because she’s special needs?  Probably not.  I don’t want to fight it.

Fred is biting every day.  On days he doesn’t bite, he hits and/or kicks.  I get the notes home always with the smiley faces noting that the other kids are accepting of it and encouraging of him “use your words!  Calm down!”.  I’ve nicely requested an FBA twice.  They want to wait until they see CONSISTENT biting (read:  a week without a Jewish holiday where the kid is THERE every day).  Fine.  I’m not fighting it yet…. but after the chagim (Jewish holidays), I might just call a conference.  They plan to beef up the ISA’s presence with Fred (kind of like assigning him a one on one aide which is what the FBA would probably lead to anyway)— but will Mr X’s presence pinpoint the source of the biting, or just be a response block?  I don’t want to fight it.

Fred is now on 15 mg of abilify per day.  Yes, FIFTEEN.

The gifted program at Fred’s school did extensive testing on him and want to grade accelerate him.  HELL to the no.  You’re going to put a kindergartener who is BARELY potty trained, can’t make friends, can’t share, can’t take turns, can’t be patient, can’t take no for an answer…. into first grade?  So they’re going to speak to Fred’s teacher and IS and figure out a plan to get him some gifted work to do while remaining WITH his peers and learning what he needs to learn in kindergarten.  Sure, he can do fifth grade math now, but if you ask him to wait in line he screams and bites.  They told me they’d never had a kid in the school be so academically advanced while so emotionally/behaviorally deficient.  Thanks, gang, good to know.

Between the center for autism follow up appointments, the center for autism outreach appointments, the old psychiatrists and the new psychiatrist, the neurologists, the weekly therapy appointments, the weekly outreach appointments, the speech therapy, and now I’m being told my kids can’t possibly exist without a weight loss program (for Wilma) and occupational therapy outside of school hours…… I’m beginning to think I need a full time secretary just to schedule my kids’ lives. On the other hand— I think I’ll hire one secretary for that, one to run my businesses, and one assistant to take care of my housework while I go take a nap.

 

Summertime

It’s summertime and the living is easy.  Isn’t that how the song goes?

Since I last wrote, we added weekly therapy for anxiety, upped Fred’s abilify to 5 mg a day (Wilma is on 2 mg a day)… Wilma is still gaining FAR too much weight and is now 12 pounds heavier than her twin brother, signed up for outreach assistance that will send a worker to school once a week for each kid to help with anxiety issues, did two MFE/ETRs/IEP updates and two transition meetings at two different schools.  It’s official— we’re going to ATTEMPT to mainstream both twins in public school in the fall at two separate schools.  For Wilma it should be fine— her main issues are tantrumming, toilet training, and focusing.  She has no problem being in a large group of other children and functioning within the group.  She’ll have an intervention specialist to help with her issues and I don’t anticipate problems with her placement.  I even truly believe that if we’re magically able to toilet train her in the next year, she might go to a Jewish day school with a one on one aide for first grade.  Fred, though, will also be in a mainstream classroom— the feeling I’m getting is that’s where he’s ending up because there is no other option — because he’s verbal and toilet trained now, he no longer belongs with the autism unit.  He will have massive issues being in a classroom of twenty children.  I warned them.  They’ll come up with a plan B if they need to, or Mama Bear will come in with backup.   🙂  In an autism unit of seven children and three teachers, he did fine because there was always an adult RIGHT next to him for support.  In a mainstream classroom of twenty children his anxiety will go through the roof.  I’ll keep you all posted.

I’m feeling sad and jealous this week.

My friends are posting pictures of bbqs, swim parties, fireworks, carnivals, and the like.  When we do try to do anything like that, we end up with a massive double meltdown, someone (usually more than one person) gets bitten, and it’s just easier to stay home and let the world go by.  These two are on their best behavior on a day where Fred isn’t challenged to interact with anyone, share, communicate, or be involved with the outside world.  He’s a PLEASURE at home.  Unless Wilma is around.  And she always is.   So home isn’t a piece of cake either.

This summer, my husband isn’t working.  I’m the sole income.  So I should be working.  Well.  Daycamp had four days and now a ten day break.  They give the ENTIRE WEEK off for the fourth of July.  So if I ask my husband to entertain the kids for more than twenty minutes I feel guilty.  They’re home, I’m supposed to be on them.  He’s got the “where on earth can I take them by myself” attitude (I don’t blame him!), so if I try to get anything done, Wilma is banging on my office door:  “mommmmmy.  mommmmmyyyyy.  mommmmmmmmmmmmmmmmy”.  So we end up separating them for as much of the day as possible.  Hubby takes one twin to the attic playroom while I’m with one in the living room.  Then we switch.  Rinse and repeat.  Wilma whines and whines that she wants to be where Fred is, and Fred is THRILLED to have his Wilma-free time where he can just BE.

The first four days of camp went well.  I’m in shock, but Wilma is willing to pee for them.  They sit her on the potty and she pees.  She stays dry in underpants at camp.  And then comes home and poops in her underpants multiple times in a row.  And instead of letting me clean her off lies down and screams hysterically.

Fred isn’t biting at camp.  Again— total shock.  However, we’re in no school no camp mode this week, so everyone is getting bitten.  The boy wants his structure back.  He bit me two days ago and my husband yesterday.  Surprisingly he didn’t bite Wilma today– she was due for one.  Oh he did bite her HAIR, I take that back—- he bit some hair right off her head.

This camp is amazing.  I wish it were a Jewish camp.  I wish it weren’t 35 minutes driving distance away (no transportation).  I wish it weren’t in a horrible neighborhood.  But it works on IEP goals, it strives to truly understand our kids’ needs, and it’s got a WONDERFUL teacher to student ratio.  This year it’s eleven kids with four teachers (this year, our twins are together— SO FAR SO GOOD!)

On one of the websites I frequent for Orthodox Jewish mothers, in the special needs forum, someone asked for advice about having more than one special needs child— balancing their needs and balancing life and kids and (yep, she asked about….) cleaning and cooking.  Wait, I’m supposed to clean and cook?   I liked my answer and thought y’all might like it too so here it is.  It gives good insight into our lives (and maybe why I haven’t blogged for a couple of months— sorry!). Enjoy

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………………between the two of them they have 2 neurologists, 2 psychiatrists, 2 therapists (but we just begged one therapist to take them both so now it’s ONE weekly appointment for both twins), an outreach worker from the therapy center, an early child intervention specialist from the board of developmental disabilities, a special needs dentist who can sedate them, physical therapy, occupational therapy, speech therapy, etc etc. Balancing all of that with TWO IEPS each year and meetings at the center for autism and TWO MFE/ETRs every 2-3 years (we did at 3 and at 5 pre kindergarten), means I can’t work a traditional job—- I have to spend lots of time each day emailing teachers, coordinating therapy, working on behaviors, etc etc. So I work part time from home and figured out a way to make a full time income doing part time work hours and putting my kids’ needs first. My husband works, but his pay is very minimal and he doesn’t work at all during the summer or during cholhamoed and when he doesn’t work he doesn’t get paid, etc. So we survive without health insurance. we work  enough that our kids get health insurance, but to pay an extra $1000 a month for the 2 of us just isn’t happening now. (we both have pre-existing conditions). So that’s financial. I’m the only income this summer.

As far as more children go, we’re done. If magically in the next couple of years we can somehow figure out how to get health insurance (I’m self employed and my hubby’s job has no benefits), AND both our kids behaviors are a LOT more under control (we’re dealing with daily biting, hitting, screaming, toilet issues (one twin at five and a half isn’t near toilet trained), then we’ll consider it. But I’m 38 already, so I’d be over 40, and yeah— we’re probably done.

We don’t throw parties, we rarely have Shabbos guests, and our house isn’t clean. it’s LIVEable— the laundry is always caught up if not put away—- there are dishes from which to eat even if there are dirty dishes in the sink, etc.

Our kids come first. 100%. I schedule EVERYTHING around them. I don’t do laundry when they’re home—- I don’t cook when they’re home— I ALMOST never pick up the phone when I’m home alone with them, but sometimes it’s unavoidable. I do everything after they’re in bed at night. Work, laundry, cleaning, bill paying, etc etc. This year, they were on separate preschool schedules—- he went in the morning and she went in the afternoon (2 diff types of special ed in public school this year). But this fall, they’ll both be in full day kindergarten, opening up my day to be able to do normal mom things (work, laundry, cleaning bill paying) while they’re in school so maybe I can BREATHE in the evenings after they go to bed. just trying to keep my head above water till then. Smile

We’ve got both kids on abilify— it’s not making enough of a difference that I can get through a day without being kicked/hit/bitten, but full on autism meltdowns (triple a normal temper tantrum) are SHORT— ten to twenty minutes now. Still intense, still frequent, but SHORT. Ten minutes after the screaming starts, I have a 5 year old in my lap hugging me and that makes it all better. So for us, meds HAVE helped a bit though we’re still tweaking dosages.

We DO go to simchas without our kids— there are sitters out there willing to deal with non toilet trained 5 year olds, hard autistic behaviors, etc— you just have to really look. We don’t want to miss out on every simcha just because of our kids. Having said that, we 99% of the time don’t take them to community events. We DO take them to quiet Shabbos meals in a friends’ home, but we don’t take them to kiddushes or vorts or chassunahs, etc. It makes our lives a lot less stressful. It’s clear who in our community GETS our kids and who just thinks we’re lousy parents who can’t control our screaming brats. So we choose our friends carefully.

I don’t think I’ve posted my blog link here on the forum before— my facebook friends know it and I’m VERY uncomfortable having just ANYONE out there in internet-ville knowing about my life and connecting this blog to ME but this is a closed forum, yes, and most of you don’t know my name in real life…… those of you who DO know who I am, I ask that you just never mention my name or my kids names in your blog comments….. I’m going to share my blog here because I think it might give fellow frum special needs moms some chizzuk, some knowledge that you’re not alone. I haven’t blogged in a little bit— but some of my past posts are pretty intense. https://sortedmegablocks.wordpress.com On the blog, my kids are “Fred” and “Wilma”. Smile

As for a supportive family, my parents didn’t come to my wedding— I haven’t seen them in almost 20 years. Long story. My in laws are great but far away and in very poor health— we only see them once or twice a year— we don’t travel, so they come to us. We talk on the phone daily but as for babysitting help– nahh.

Even if you’re a stay at home mom, I’d encourage you to hire a babysitter for a little while here or there— your county board of developmental disabilities might have a respite program. We get $2250 for the year from them. $1200 for daycamp and the rest for babysitting— it’s not enough to pay for all our babysitting needs (I have a sitter every sunday morning while my husband is at work so I can work too and on monday afternoons because there is never camp or school on mondays at any of my kids’ programs)—- MOSTLY I work at night but for daytime phone appointments this helps.)—- but it pays for some amount.

I also love a lot of the autism mom support groups on facebook. PM me and we can be facebook friends and I’ll hook you up.

Just re-prioritize— don’t bother cooking anything fancy, cleaning to fit your standards (just clean enough that y’all don’t get sick), or paying bills on time— just BE THERE for your kids and there will be light at the end of the tunnel.

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.

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