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.

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Pharmacy Hour

Some nights I just want to chuck the risperdal, vitamin D, multivitamins, probiotics, fish oil, geodon, adderall, colace, NAC, tenex (gotta crush that one of course), and last week benadryl (but no more albuterol because I was told maybe THAT caused more aggression) (Fred was sick- he’s fine now, but every time he gets a cold he gets R.A.D.) ………..out the window and just tell the kids to go to bed. There are families out there who don’t have pharmacy hour between exercise time and bedtime– amazing.

Med update:

risperdal—–  WAS working well for Fred.  Until now.  He’s now at the highest dosage and he’s been suspended from school 5 days out of the past 6 weeks.  Emergency IEP meeting—- I asked for a 1:1 aide.  Denied because “he has more good days than bad”.  I asked that they stop suspending him because you can’t suspend impulse control into a kid with autism.  Denied.  I asked for another FBA– got THAT rolling.

Vitamin D—- Wilma is low.  Duh, we’re in Ohio.  Why is Fred not low?

Geodon— working fairly well— she’s having a good year.  Today I was told at her anal manometry that they’ve not usually done manometries on kids on such strong anti-psychotics.  yeah, ok.

Adderall— working super well—- she always does homework nicely, and always sits through class well, needing just a few breaks per day.

Tenex— just added it for the finger picking and forehead picking…… she gets one pimple and spreads it into a little colony by picking and picking.  Fun times.  Tried tenex before and it did nothing, but that was years ago.

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.

Autism Has Made Me a Better Parent

I’m reading this post that my friend made over at SPD Blogger network.  In the last paragraph she writes:

“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.