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

Archive for July, 2012

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.

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