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

Archive for the ‘HFA’ Category

Can You Tell?

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?

 

autism meme

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Autism and Aggression

There are certain images that engrave themselves on my mind from time to time. Much of the time these images relate to children, teens, or adults with LFA. My children, because they are verbal and toilet trained/training, and cognitively fine, are considered HFA. Yet I sometimes feel very alone in the HFA world as my kids (both of them) have the aggression typically associated with the LFA world. My nose has not YET been broken. I HATE saying YET but it’s the truth. My kids are getting bigger, stronger, and more stubborn. With every glimmer of improvement I see, I also see the possibility of me or their father or one of his teachers (he is aggressive at school as well as home) needing medical attention or God forbid, hospitalization.

HFA support groups don’t focus on aggression, which is our biggest stumbling block. I don’t care if my son has any friends if he can’t stop biting. Let’s get the biting under control first. I don’t care if my daughter speaks nonsense if she throws her shoes at strangers, know what I mean? LFA parents don’t feel welcoming, at times, to me, when they’re confused by my kids’ academic and verbal achievements and write us off as “autism lite”.

One of the images on my mind is this….there is a woman on a facebook group to which I belong who was changing the diaper of her teen boy when he kicked her in the belly hard enough to kill her unborn baby (she was 8 months pregnant).

There are many parents who are afraid for their lives because the meltdowns of their children with autism can be very VERY violent. There are teens and young adults who have killed their parents. There are parents who sleep in shifts.

I thank God every day that the aggression we see in our children is less intense and less severe than the aggression typically seen in those LFA children, teens, and adults whose mothers I’ve befriended. However, even though our aggression is no longer multiple episodes per day and indeed there are full days with NO aggression, I still get extremely frustrated by the comments from ignorant onlookers. “Are they retarded or something?” “Spoiled brats!” “Why don’t you give them a smack?”

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?

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.

What the heck I’m talking about

People are requesting definitions of the alphabet soup, so here goes…

 

IS= Intervention specialist.  Each of my kids has one in their public schools.

ISA= Intervention specialist aide.  Each of my kids has one of these too.  Wilma never puts her poops in the toilet- EVER, so her ISA gets the fun job of taking poopy underpants off an almost 6 year old.  Fred DOES put his poops in the toilet FINALLY but doesn’t yet wipe himself so his ISA wipes his butt.  🙂

MFE/ ETR=  Multi factored evaluation/ Education Team Report.  The MFE is once every 2-3 years.  We just had our second one so the twins could transfer from preschool to “school age”.  It’s MANY MANY observations and pages and signatures.  And an IQ test too.  ETR= the report leading from the MFE which brings us to the qualification for the IEP.

IEP= Individualized Education Program.  My kids don’t go to school without one and the benefit of public school is that their schools are mandated to follow it.  I sit in the meetings crafting it and it includes gross motor, behavioral, toileting, etc etc goals.  For instance this year a goal for Wilma is that she must learn to write her name.  A goal for Fred is that he must take turns with a typically developing peer using a central material (car, windup toy) by asking if the person is ready for the object and waiting for a response and asking for the person to pass the object.  etc etc etc.  Each goal has subgoals and progress reports relating specifically to the goals, etc.  I begged for potty training goals.  The goals aren’t well written, but they’re in there.
HFA/LFA= High Functioning Autism, Low Functioning Autism.  Most consider both my twins to be HFA, but dang if I don’t have an almost 6 year old who’s never put a poop in the toilet and another almost 6 year old who refuses to talk to a peer— he’ll either ignore or bite.  But they’re verbal.  And toilet training.  So they’re HFA enough NOT to qualify for SSI or waivers or extra respite funding, but LFA enough not to be able to attend any school they want (I would LOVE to put them in a Jewish day school, but we’re just not ready).

SSI= Supplemental Security Income.  We applied and got denied.  At some point I’ll hire a lawyer and try again, but I’m a bit busy TRYING to make enough money that we can BREATHE.  God forbid we ever want to buy a house or take a vacation— no, I just don’t want to live in a cardboard box!

ABA= Applied Behavior Analysis.  something our kids’ insurance won’t cover and their school district doesn’t feel they need.  But our local autism center demands they get 20 hours a week of it and it’s the most expensive therapy you can find.

There’s plenty more but that’s it for now!

 

HFA versus LFA

People ask me ALLLLL the time whether my twins are high functioning (HFA) or low functioning (LFA).  Truth is, I don’t know.  I have their test scores and I know where they score in relation to neurotypical kids and in relation to other kids with autism, but I don’t officially know whether they are HFA or LFA and truthfully, I don’t really care.  They’re high functioning because they walk, talk, eat, and are academically either on target (Wilma) or ahead (Fred).  They’re low functioning because they are about to be five years old and are not potty trained, cannot dress themselves, and in Fred’s case, cannot be in a group situation without a massive meltdown.  Both were in “regular” special education this year, with half the class special ed and half the class neurotypical.  Wilma does well in that setting.  Fred had a rough year and this year will be in a class of all kids with autism.  He’ll have more adult attention, and the addition of ABA (applied behavioral therapy).

A friend of mine on one of the autism facebook groups says the following about HFA versus LFA and I asked her permission to share it here on my blog.  I found it fascinating.  Her name is Heather E. Sedlock and she herself has autism.  Read on!

Heather E. Sedlock: Okay, I’ve been thinking about this and I”m about to (was going to drop it) detail *why* I find the terms LFA/HFA less than desirable. When i do so, it is NOT a judgment of those who have used the terms here in this group or elsewhere. It is just *my* interpretation of why the terms need to stop being used and some news ones defined if really necessary.

When you call me “HFA”, you totally dismissed all my struggles. It’s like saying, you can talk, walk, feed yourself, so you’re perfectly fine and can’t possibly understand what it’s like to not have skills so needed for life. The struggles I face daily are summarily dismissed as if they do not occur because the focus in on what I can do and not what I cannot do. Therefore, it is as if I don’t need any respect, assistance, guidance, and understanding as an autistic person.

When you call me “LFA”, you totally dismissed all my strengths and battles overcome. All the progress I have made in a certain area is summarily dismissed as if they did not occur because the focus is on what I cannot do and not what I can do.

Autism comes with a mixed skill set. Period. It doesn’t matter what type of autism it is either. That is part of the diagnostic criteria because *every* person (child or adult) that has autism has a mixed skilled set. By focusing on one set or the other, you are saying, to me, that the other side does not exist. Therefore, you are limiting a DESCRIPTION of MYSELF to one area. You would not like to be defined or described by one skill area, would you?

Thank you Heather!  Whenever I think of HFA versus LFA, I’ll be thinking of this post!

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