and for the rest of us where you can tell the child is on the spectrum, give the mom a good long judgemental stare…. *KIDDING*! People either LOVE this one or hate this one– see why?
and for the rest of us where you can tell the child is on the spectrum, give the mom a good long judgemental stare…. *KIDDING*! People either LOVE this one or hate this one– see why?
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.
“In many ways, I feel that Autism has made me a better parent. I have come to appreciate the moments and every success that all 3 of my children make. However, it has made me timid. It has, on occasion, made me so nervous that I’m afraid to step out my door to see what the world has in store for us. There are days that I really miss the Mom I was.”
She and I have a lot in common– we both have five year old twins with autism. I think all the time about how timid autism has made me and how very few times I step out my door WITHOUT pecs, just in case changes of clothing, loveys, and a very healthy sense of trepidation. Today for the first time in years we had a PERFECT (ok, ALMOST perfect) Shabbos lunch at a friend’s home. NEITHER of my children misbehaved (greatly). NEITHER of my children had a sensory meltdown. BOTH children interacted with the host family’s children. My son, who pre-abilify would never give a hug to a stranger went up to both the Mr. and the Mrs. of the family (without us asking) and hugged them! WHAT?!?!? Abilify might just be doing something for him! ok, Tenex is still doing nothing for Wilma, but today she was great!!! So tomorrow when I take the kids out in public, will I be less timid and fearful? Nope. I’m realistic— I know that today was a total fluke.
But I NEVER think about how autism has made me a better parent. So I’m sitting here (with a sinus headache, so it’s not like I can concentrate on work related stuff anyway at the moment) thinking about it. My twins with autism are my first and only children. So I can’t compare my parenting to MY parenting of a neurotypical set of twins.
My friends with neurotypical children take some milestones for granted. For each milestone they don’t have a folder of pecs/social stories/bookmarked websites/loads of posts on online support group websites. I saw a two year old today who, when she needs to go to the bathroom, goes over to the bathroom, undresses herself, sits on the toilet herself, does her business, washes her hands, and comes back out. My five year old son is now newly toilet trained, but I help him every step of the way on the potty, remind him to go potty, etc— he absolutely refuses to dress or undress himself— and wiping? we’re probably a year away from that. Does it make me a BETTER parent that I’ve spent not hours, not days, but YEARS in preparing my son to get just THIS far with toilet training? Not necessarily– our kids get to the same place at different rates. But it makes me a much more STUDIOUS parent. Out of necessity, everything my kids do comes complete with a laminated social story, a chart, loads of late night hours spent on support group websites. And now I blog about it all too.
I reach out for companionship. My friends with neurotypical children are friends with their neighbors, their children’s parents, their general religious community. I am friends with all of the above PLUS an entire online arsenal of cheerleaders: fellow autism moms. Am I a better parent for befriending the women who can help me decode my children’s mysteries? Nope….. but definitely more introspective. I think most parents don’t think, when they make a friend…. “how can this woman advise me vis a vis my daughter’s IEP?” “how can this online website help me learn the tricks to get my son to take off his own sweater?”.
So I’m a more studious and more introspective parent than I would be if I weren’t blessed with children with autism. And much more timid too. And that’s why my friends with neurotypical kids will all be at Chuckee Cheese tomorrow, but we won’t be there.
Our little update: Fred is now on abilify and Wilma is now on tenex. Abilify is calming his desperate questioning “may I calm down? May I bite? May I hit? May I stomp my feet?” AND is making him more gentle and cuddly. It hasn’t stopped the biting, but I’m starting to see some differences I like. Wilma’s tenex is doing diddley squat. If she’s going to go into full blown crazy mode, this med isn’t stopping it either. The psychiatrist wants me to give it more of a shot but I think I’m going to ask for risperdal at the next visit.
Watch this video.
In many ways it’s an advertisement for Ohel Bais Ezra— but it’s touching in that it shows us the following.
1) Autism happens in the Orthodox community.
2) It’s not talked about because of the stigma involved.
3) Lots of autistic behavior is looked at by those who aren’t aware as just being the result of poor parenting. Example: No, I CAN’T just bring my child home when he screams in the supermarket. He’s going to scream EVERY time (or almost every time) I expose him to that environment. The key is to keep doing it from time to time and working on the skills needed. Hiring a babysitter everytime I need to go to a supermarket isn’t feasible or what’s best for my child.
It’s a little cheesy, but definitely worth a watch.
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?
The 3rd or 4th person in the last 2 years told us (my hubby anyway) about a “great residential program” for 4 year olds with autism. Is it just me, or is it INCREDIBLY insensitive to assume we’re thinking of putting him in residential? Apparently the word on the street is that we’re in over our heads and can’t handle our kids. /vent over
Even *IF* we were feeling we needed to send him— which we DON’T—- those programs are expensive! If you’re going to call us and tell us about these programs are you also prepared to hand us the cash?
Everytime I take my kids by myself somewhere, I have to plan ahead. Willflop down in the middle of the and refuse to walk? If I’m alone with her I can pick her up. But if is with us he can not simply hold my hand and walk nicely while I carry his 45 pound sister. When she pulls this, he immediately bites me. EVERY time. It’s impossible to hold his hand while he bites me. I no longer have a double stroller which fits in my tiny car. I have a great double stroller to use for around the neighborhood, but for car trips I typically depend on going places where we quickly walk through a parking lot, go in, and the kids get absorbed in whatever is inside (toys in the doctor’s office, books and toys at the library, the fun at daycamp). I did recently get a larger size single stroller for Wilma for trips to the hospital where there is lots of walking (we recently did an , an , the neurologist, and other fun stuff at the main campus of our hospital which is not friendly to a hypotonic 4 year old on the spectrum), or for the mall if I EVER venture to try that with the kids by myself again (not bloodly likely). I CAN take the kids to target, walmart, and the — they LOVE to ride in the cart. But at 40 and 45 pounds, once I have the kids in the cart I have no room for groceries. But that’s ok because with the kids in the car seats in the back, and a mountain of stuff in the trunk I haven’t had time to clear out (more in another post on why I have no time), there’s no room in the car for STUFF anyway. When I take the kids to walmart or target it’s to get a couple of items (usually diapers– more on the evil topic of potty training in a future post), but mainly to get OUT of the house. Staying home with both of them all day is a challenge to say the least of the matter. But going anywhere with them that isn’t target, walmart, or the grocery store is also a severe challenge. I’d given up on the mall, and I’m about to give up on the library too. More on the playground in a future post….
You know how you sometimes see a mom with neurotypical kids walking through a parking lot and her two, three, or even five or six kids are just walking next to her or holding her hand and the act of getting from point A to point B just seems to be no big deal? I get that every now and then and today, TWICE, I did— I was thrilled. But then there are days like yesterday. I took them by myself to orientation for a camp program they’ll be starting on Thursday (their main special needs daycamp program will be ending, and they’ll be doing a seven day program specifically for kids with autism). So I get to a large parking lot in front of a large building and I’m not sure exactly which door to go into—- I’m sensing trouble— the last time this happen I ended up with six welts on my arm and I was covered in sweat within three minutes. By the, both kids happily walked holding my hands from the car into the building! And when I asked someone where to go, they happily followed me! WOW! This might be a great experience! They enjoyed the orientation, playing with the toys, meeting their teachers, etc etc and then…. it was time to leave. I had such a great experience walking IN with them that it just didn’t occur to me to worry about leaving. It’s always when I’m on a high and NOT expecting trouble……
Wilma refuses to leave. She flops down on the ground, kicks her feet, flails her arms and I calmly ask her to get up approximately 17 times because I know I can’t carry her to the parking lot because Fred will then bite me. While I’m calmly asking her to get up, he bites me anyway. I calm him down while she runs off. I gather her and she actually starts walking. We pass an entire class of kids their age– neurotypical kids all lined up nicely at the door waiting for their parents to pick them up (there is a “regular” camp group that meets in the building). I’ve got sweat dripping down my face but no hands to wipe it because if I let go of her for a second, she’ll run. If she runs, he’ll bite me. The teachers are watching me. We get out the door. She flops down again. Again, I tug at her arm, gently enough so it doesn’t leave it’s socket, but firmly enough that she gets that I will NOT be carrying her and I will NOT be letting go of her hand. He bites me again. I calm him down again. Now my entire face is covered in sweat. THIS is when a friend of mine comes towards the building— her daughter is in the camp group we just passed, and she’s there to pick her up. Her kids (all 87 of them—- ok, I think 6) are neurotypical. One of her kids is my kids age and has been toilet trained now for approximately thirty seven years (I have a few insecurities about the fact that I CANNOT toilet train my children- more in a future post!). In her mind, she’s thinking— oh, it’s nice to see you– your kids are getting so big– have a great day! In MY insecure mind, she’s thinking—- oh wow, one kid screaming and flopping, one kid, what is going ON with her ? Meanwhile I’ve taken a lot of parenting classes and have read a lot of parent books and am amazed that my twins’ behavior continues to stump me so much. God has blessed me with these children to teach me lessons about patience and behavior management.
Hoping for more than two days in a row when I can make it through a parking lot without being covered in sweat and bite marks.