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

Archive for the ‘Paperwork’ Category

Hurry Up and Wait… No More

Now that Wilma’s medications are under control and her behaviors are starting to improve, and many times we can go places and trust that she won’t throw shoes at strangers’ heads, we can finally begin intensive behavioral therapy. After years of insurance won’t cover it and the school district doesn’t provide it, we sat on waiver wait lists. After getting approved for SELF waiver we waited some more. Our enroll date is Jan 29th. FINALLLLLY this coming Tuesday, April 8, we will begin services— part of the FBA that will lead to ABA. Do a dance of joy with me. Will ABA be the magic bullet? Maybe not. But to be able to access it and try it before shrugging it off as “well, she’s high functioning, so it’s probably not for her” is a blessing. Now to get Fred off the wait list. When I called and asked why she was approved first I was told it was because he “ONLY” has autism. ONLY. HAH. She’s got autism, adhd, ODD, megacolon, encopresis….. and a partridge in a pear treeeeee. At the moment, his behaviors are more severe than hers. But SHE’LL get the intensive therapy.

ABA is what I THOUGHT would be part of Fred’s autism classroom in preschool. Though I LOVED that class for him, it wasn’t ABA. Some kids get ABA tutors in public schools— but I’ve been too happy with the district to fight them. For what they DO provide, they do an awesome job and really love and know our kids. ETR/IEP meetings are a breeze. But I’ve been wanting to try ABA and had no way to do so. Until now.

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.

Tree Killing

The kids are home from school for two weeks for winter break.  I still have to make an income, do some housework, and do….. the paperwork.  I’m not going to say it’s been EASY, but Wilma’s new medication is… dare I say it……. WORKING!  She’s had a couple of massive, horrific temper tantrums….. but just a couple!  There are DAYS that go by with just NORMAL five year old temper tantrums (you all know the difference between a normal five year old tantrumming, and an AUTISM tantrum, right?  My landlord doesn’t— he came to get the rent tonight and he spent five minutes pontificating how his grandchildren also have temper tantrums—- tantrums don’t mean autism…. um helllloooooo.  I LOVE my landlord in every other way so I’m not going to torture him by making him read this blog— but I’m tempted.)

I digress.

Yesterday I hired a babysitter for four hours so that I could photocopy:

Wilma’s ETR x2

Fred’s ETR x2

Wilma’s IEP x2

Fred’s IEP x2

Wilma’s adhd paperwork x2

Wilma’s autism paperwork x2

Wilma’s special speech eval paperwork x2

Fred’s autism paperwork x2

 

And then stand at office max dividing it all up and stapling it all………  1 copy of each for the new developmental pediatrician.  Do we NEED a developmental pediatrician?  No….. we have two neurologists, a psychiatrist (same one for both twins now— THAT’S new!), a therapist, an outreach worker from the behavior center, an outreach worker from the county board of developmental disabilities, an outreach worker from the autism center… and a partridge in a pear tree.  It takes a village, right?  However….. we HATEEEEEEEEEEEEE our required weekly behavior therapy.  All three psychiatrists we’ve tried thus far have required weekly therapy.  The ONLY weekly therapy covered by the twins’ insurance within a half hour of our home is at a behavior center that we’ve grown to dislike VERY much.  And we’re there at LEAST once a week.  We have the outreach worker there, the therapist there, and the psychiatrist there.  Soooooooo at my last meeting with the outreach worker from the autism center, I told her how we’re STUCK at the behavior center which shall remain nameless.  She called a developmental pediatrician to ask her if she’d consider doing our med management (and not require this weekly therapy…..).  We have our first meeting with her on the twenty first.  I HOPE this works out so our Wednesday afternoons could be easier!

1 copy of each for the SSI lawyer.  We tried applying for SSI for one twin and got denied.  I got frustrated and gave up.  But ASIDE from the work I put into my businesses and the work I put into laundry/ bill paying/ cleaning (ok not that much work ha ha)/ cooking…… I put AT LEAST fifteen hours a week into emails, phone calls, paperwork, meetings, and research about these kiddos.  Dammit we need the money.  PAY me for all this damn work.  So we’re re-applying.  With a lawyer.  Wish us luck.

 

oh by the way…..

Oh I forgot to tell you all the upshot of Wilma’s IEP meeting and follow up conversations……. she’s not in a special ed class.  She’s no longer REALLY in the mainstream classroom.  She’s not sent off to an autism school.  They’re bending over backwards to create a schedule for her based on her needs.  The resource room and the intervention specialist (who works with first and second graders also) is her home base.  As behavior permits, she is brought into the mainstream classroom with an aide for 50% to 85% of every day.  She gets a LOT of individual attention (some of it from the occupational therapist which is interesting because I had been toying with the idea of begging for more OT…… hey!) and over the past few weeks since this new program has been initiated, her behavior at school has gotten MUCH MUCH better.  She earns the right to go be with the group and see her friends…. and the bulk of her academic work is done in very small groups without the overwhelming atmosphere.  Before she was being removed from the group when she was disruptive.  NOW she works well one on one or in small groups and then GETS to re-enter the classroom for part of each day.  She does all specials (art, gym, music, library, lunch, snack) with her class.  Rest time she does in the resource room because everyone else was resting and she was up at the computer reading over the teacher’s shoulder (poor teacher was constantly emailing me!).

Additionally I won the FBA argument.  I have a meeting on January 10th to sign the paperwork to get an FBA in place for her.  SO WHAT if her behavior has improved over the past few weeks.  LONG TERM, it’s gotten much worse from preschool to kindergarten.  I need a paper trail NOW to show that we’re doing all we can to keep her mainstreamed because things are only going to get harder once the first, second, third grade bullying starts.  Thankfully, there has been NO kindergarten bullying (yet?!).

Here comes winter break.  Two weeks of not being able to travel with them, not being able to take them anywhere by myself, not being able to move a load of laundry without Fred biting Wilma as soon as she ticks him off.  I’ve changed my meds.  I’ve changed Wilma’s meds.  I’m armed with lots of books, toys and games.  Let the fun begin.

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.

IEPs are done!

We did IEPs on Monday!  I was in and out in two hours for both kids (since I had already had a three hour PRE IEP meeting).  Five goals with subgoals for Wilma, Three goals with subgoals for Fred, enough OT, PT, and speech to satisfy me but not so much that switching them to the therapy center is out of the question (I just love their school so darn much though…..).  I’m satisfied.

Potty training goals for both twins.

Kindergarten placement?  To be decided at the end of February when ETR results are back.  ETR testing started this week.  PLEASEEEEEEE  let there be the right program for both of them at ONE school with similar hours this next year.  PLEASE.

But here’s a funny poem because this nice Jewish family loves Xmas poems.  — about the IEP process—- for most fellow autism moms, it will garner some chuckles!

 

We Have a New Dentist

I have a happy post.

Our dentist whom we LOVE can’t handle my kids anymore.  He doesn’t offer sedation for children.  At all.  Take my two autistic four year olds, put them in his small office with no laughing gas, and the whole building is in for a rude awakening.  My husband and I will still go to him- he’s wonderful.  But my kids need to be knocked over the head with a frying pan sedation.

So I called every dental office listed in our local autism directory— most of them DO have experience with patients with autism, but put them all completely under in a surgical atmosphere.  My kids don’t have cavities or dental issues— they just need cleanings— a little sedation is fine, thanks.

This was a disaster waiting to happen…..

1)  I couldn’t get the twins their cleanings right away— they needed us to have a first appointment (consult) first so I have to take them AND take them back…..

2)  It’s in a ridiculous campus of buildings — had I not studied the campus map on the internet I would have been ridiculously lost.

3)  Parking is a nightmare– not for normal people, but for a mom with two behaviorally challenged four year olds?  ugh.

4)  I don’t have a double stroller big enough for these people that fits in my car.  These people were going to HAVE to walk.  Or at least one of them— I brought a single stroller with me.

5)  It’s the dentist.  Nuff said.

 

But……. dance with joy with me please.

1)  I found the building without driving around and around and around.

2)  Valet parking, usually reserved for labor and delivery patients, agreed to valet my car.  Worth every penny.

3)  Both kids eagerly walked to the bathroom where Wilma and I went potty and Fred got a diaper change and then eagerly walked with me to the office.

4)  While I filled out 15 minutes worth of paperwork (no joke), both kids quietly and happily watched Spongebob on the tv.  Totally amazing in and of itself.

5)  When we walked back and Fred screamed “oh no!”  he got over it very quickly and walked to a corner and pooped.  If he’s comfy enough in the office to poop immediately, it’s a good sign.

6)  They patiently made it through the teeth counting and poking around and all my questions.  A Bit of screaming, but that’s to be expected.

7)  They will give us FREE sedation at each appointment.  Our insurance doesn’t cover it but they won’t charge us.  No kidding?

8)  We left with toothbrushes, stickers, and appointments for cleaning for two separate Mondays in Jan and Feb (I’ll leave the opposite twin home with a sitter).

9)  They went back with me to the bathroom where Fred got another diaper change.

10) They WALKED to the lobby— I never unfolded the stroller— Wilma did NOT flop down, refuse to move, scream, whine, or cry.

11)  The valet drove the car up, I paid and tipped, and he STAYED with me while I got both kids in carseats and HE put the stroller in the trunk.

 

SpongeBob SquarePants (character)

Image via Wikipedia

12)  Nobody was crying or screaming, so we went to target next. Wilma picked out more panties.  Why?  Because starting next Friday the 23rd NO MORE PULLUPS except at night.  Her teachers agree that over winter break we should do panties all the time and then when she comes back to school just send lots of panties and changes of clothes and let’s hope for the best— she’s about 80% trained now—– NO #2 in the potty yet, and NO #1 in the potty unless I tell her to (she never tells me), but I’m telling her enough that she’s staying dry ENOUGH.

 

I’m in shock!  This was the first time in ages that I’ve had a successful trip out with BOTH kids that wasn’t at walmart or target (where I can throw them in the cart).  Not only was it successful, it was the DENTIST– which could have been soooooo horrific.  He remembered past dentist appointments and freaked a little, but calmed down so incredibly quickly.  GO FRED AND WILMA!

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Working Hard? Hardly Working?

I’m supposed to be working full time.

A decade ago when I decided to have children I picked up a part time hobby which became a part time business.  As we were moving through the intense infertility battle, I was having my own health issues and needing to take breaks from the battle.  I decided to stop working full time, put my part time business into higher gear, and be a work at home mom…. Before the kids came.  I knew ultimately I’d want to be making a full time income from home so that I could spend as much time with my children as possible.  Everything was going quite nicely when I finally got pregnant and had the twins.  Even after the twins were born, I was remaining in the top 2% of my company, holding weekly meetings in my home, marketing to new customers and building a sales team.  Direct sales was my baileywick, and I was also a pretty good mom.

Their special needs hit slowly, and one at a time.  By the end of the twins’ first year, we felt there were some delays but “they’d catch up” and maybe they’d need special ed but “just for a little while”, and there’s my favorite line of all – “well, they WERE preemies”.  I was doing all I could to work as many hours as I could, and things were plugging along.

 

False Sunflower Heliopsis helianthoides 'Summe...

Image via Wikipedia

Fast forward to now.  My twins are almost five years old, and I have exactly eight hours a week that they’re both in school at the same time because they need different programs.  I meet the special ed bus outside four times a day.  I’m potty training.  I take Wilma to private physical therapy outside of preschool hours and leave Fred home with a babysitter.  I had twenty appointments in the last few months JUST for Wilma’s last two diagnoses:  adhd and pdd-nos.  (The EEG, the MRI, the bloodwork, the neurologist x2, the adhd appointments, the five separate pdd-nos appointments…. Etc).  Their behaviors literally take my breath away some days.  When they were babies I was not dealing with time outs and behavior charts and calming techniques and horrific outbursts in the middle of walmart (that was my morning today….).  I diapered them, played with them, and while they napped, I worked.  Now I’m SORT of able to work after they go to bed except that I also need time to do laundry, cook, clean, pay bills, balance the checkbook, shop, and organize…. And I can no longer do ANY of that while they’re awake.  Plus, bedtime is never truly bedtime since Fred chooses to make #2 only after I put him to bed and lately Wilma cries when I put her down (something to do with the clonidine, we think) so she needs multiple hugs and kisses after bedtime.

So it’s come down to this big decision.  I need a full time income.  I also need my sanity.  I don’t know any other mothers of multiple special needs children who are working full time or even part time with great consistency.  I decided to leave my position at the top 2% of my company and continue to sell product without the pressure of being in charge of a sales team.  I wasn’t able to put in the effort needed to go to my meetings (let alone run them), put out newsletters, do conference calls, etc.  I’m able to be an unpaid full time special needs interventionist who happens to be in direct sales on the side.  I used to be a sales director with a direct sales company who happened to be a mom of special needs twins.  This was a really tough decision for me.

Fellow special needs moms, do you need to make a full time income, or does your spouse provide well?  If you need to make a full time income, how do you balance your working with the therapies, doctor’s appointments, and paperwork?  I find I spend at LEAST 15 hours a week on paperwork and therapies and appointment setting (and online support groups!).

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The End of The Road is Just the Beginning

Today, we finished an enormously long process.  Wilma is now finished with her third diagnosis after a summer of EEG/ MRI/ bloodwork/ neurologist/ psych consult/ 5 appointments at the autism center/ stacks of paperwork.

About a year ago is when we started to suspect something was up with Wilma other than “just” hypotonia and a speech delay.

Someone on a message board where I had posted some of Wilma’s symptoms 5 months ago asked for an update and I realized that a TON has happened since then and I haven’t updated everyone.  We did the MRI, EEG, bloodwork, psych consult, neurologist, and a few truckloads of paperwork.

The MRI and EEG showed no seizures.  Meanwhile, her behavior got a LOT worse, almost overnight.  Her out of context speech got a lot worse too.

Hey Wilma, what’s up?  “why do the cars change traffic when the jaguar has a tail on it?  because they have sippy cups.”    Every word is English but when she’s having an episode her sentences make no sense and words just come flying out of her brain.  It happens often and it freaks people out.

Five months ago, she had no ASD symptoms that I could pinpoint.  Now she has a ton of them!  I filled out the vineland and srs, etc etc and we had 5 appointments in the last 2 weeks to give her a pdd-nos diagnosis.  Her autism is a million times different than her brother’s, but I finally do recognize it as autism now that this summer has gotten more and more spectrummy for her.  As of this morning, pdd-nos is official.  She now has hypotonia, adhd, and pdd-nos.  ODD is part of her pdd-nos but the psychologist assures me that though we’ll now be traveling down the path of psychiatry appointments and medication management, we will not need a separate ODD diagnosis— it’s just a piece of her pdd presentation.

Meanwhile—- we ruled adhd right back in— the psych and the neurologist got on the same page and diagnosed her and started her on meds.  The first week on meds I saw NO DIFFERENCE and was getting frustrated.  Week 2— I saw a difference–Thank goodness!   There were 2 days in a row that she didn’t scream or tantrum or throw things or kick or hit or even be oppositional.  Day 3 we saw glimpses of misbehavior and she needed some time outs again but STILL.  It’s not perfection, but I’ll happily take an improvement!

I’m seeing glimpses of how she used to be at age 2 and 3….  calm and compliant and sweet…. I’d missed that lately!

So she’ll continue with physical, occupational, and speech therapy and special ed.  She’ll be in preschool from 12:30 to 3:30 tuesday through friday in an integrated special ed class.

More good news.  We’re up to averaging about once a day for potty success.  WHEN she’s in the mood— she’s compliant, her meds are working, and I suggest trying to make on the potty, she MAKES and is so proud of herself.  I try to encourage her to sit more often than once a day but she’s just not ready.   “no mommy I don’t want to pee on the potty now– maybe later”.  (on a good day when the clonidine works well) and “ASDSDGHDSFHGSDGHDSHJHJJJ!!!!!!!!!!!!!!!!!!!!!!!!   NO POTTYYYYYYYYYYYYYYYYYY!  (runs around the house naked)  (on a bad day!!!!)    With all the tumult in her life (and with all the craziness of toilet training her brother) I’m just not pushing quite yet.  Let her get used to her new preschool class first.

But then when she’s having an episode of adhd/pdd  whatever the heck she’s got….. I’ll say “do you want to sit on the potty?”  and she’ll tell me she was an astronaut last tuesday because she ate a pizza.  *sigh*

Meanwhile, when people first meet my kids, if she’s acting normal, her twin brother is the one who’s more obviously special needs and people wonder why she’s not in a typical school setting.  But this summer she hasn’t acted normal a whole lot…..

ABA has now been recommended for her.  I have no idea how to get it without spending money……  we were lucky with Fred— the school district ALSO felt he needed ABA.  The school district feels that Wilma does well with an integrated classroom setting (hey— she does– they’re right).  So I don’t know how to get her free or cost effective ABA.  Something else to consider.

Today’s facebook status update:   adhd diagnosis and pdd-nos diagnosis now finalized- she’s on meds. Now she needs a psychiatrist for med management and now possibly going in a different direction for potty training—- it was suggested that we give consequences for wetting herself….. I’ll go over that idea with our board of developmental disabilities rep.

That’s just one of my twins…… well, something has to give, between all the specialist appointments, therapies, and paperwork for both twins…. since my sanity has been hanging by a thread lately, I’m about to be making big changes in my business.  More on that to come— I need to call my friend tomorrow and discuss it with her first.

The end of the road (finalizing her diagnoses) is just the beginning— I’ve learned that multiple times in the past few years.  These things tend to lead to more paperwork, more processes, more waiting lists, more phone calls, and more frustration.  On the other hand, the more of this we do now, and the more glimpses of normalcy we see, the more of a chance we have in the future of mainstreaming the twins into a typical school setting.

A neighbor told us that so and so (another neighbor with a kid with autism) gets 3 hours a day of respite.  3 hours a DAY?  what?  So I spoke to her and she told me to beg for it, demand it, and just not take no for an answer.  Not my personality for sure.  I’ve been very thankful and grateful for the $2000 a year I *am* getting.  However, I spent $1200 of it on daycamp this summer and another $400 or so on an in home respite care worker (babysitter, really).  I do need more.  I’ll do a little begging, but I have to prepare for the eventuality that I’m not going to get much of a break this school year……  Fred will be in preschool from 9:00 to 2:00 Tuesday through Friday.  Wilma will be in preschool from 12:30 to 3:30 Tuesday through Friday.  That leaves me 4 days a week from 12:30 to 2:00 without being in charge of a child with severe behavior problems.  12:30 to 2:00 4 days a week to do all my laundry, bill paying, cooking, cleaning, organizing, money making……  good thing I’m a night person and I’ll also have nights but I’ll write another post soon on why that’s not really true……

Describe a Typical Day In The Life of This Child, Morning Through Night

 

Entrance to the Occupational therapy Department

Image via Wikipedia

One constant in my life is PAPERWORK.  The SRS, the Vineland, the CFQL, the stuff for the neurologist, the stuff for the genetics guy, the stuff for the psych consult, the stuff for the county board of developmental disabilities, the stuff for school, the stuff for daycamp #1, the stuff for daycamp #2 (they’re in two camps this summer— one just ended and one just began).  I’m always working on some stack of paperwork or another.  Whenever I think I’m done for a few weeks, something else pops up.  The stack I’m working on now is specifically for Fred and I’m not yet ready to say what it’s for.  But I did want to share how I answered one of the questions:  Describe a typical day in the life of this child, morning through night.  I learned about myself and my child while coming up with the answer to this question.  My husband helped me.  THIS is how we spend our Saturday night at 11:00 pm.

As you’re reading this, remember that he’s about to be five years old.

Fred sleeps with a child lock on his door so that before he wakes up he cannot access his sister.  He sleeps in a Goodnites brand overnight diaper with stretch pants and a onesie on top to prevent diaper digging.  He wakes up in a good mood, chewing on his favorite Curious George stuffed animal.

I change and dress him and his twin sister and give them breakfast.  On days he has daycamp or school he rides the bus (in a harness) to school or I drive him and his sister to daycamp (in carseats).  On non school/ camp days, he likes to draw on his magnadoodle, play with blocks, spell with magnet letters, do math workbooks, read books, jump on his trampoline, and be tickled.  He is not as prone to enjoy playdates with children his age or typical games for four year olds as he has trouble taking turns.  He doesn’t enjoy taking walks if the destination is unknown and therefore requires that an adult push a stroller so that when he melts down, he can sit in the stroller.  He requires constant redirection so as not to stim on particular toys or activities.  He needs frequent reminders before activity transitions will take place.

We tend to avoid group activities:  picnics, barbeques, parties.  His behavior in public is completely unpredictable and though at times he is successful, he most often needs lots of support as he tantrums, screams and bites.  He does well in a SMALL group with mostly adults.  In a larger community event or a room with more than two or three children, he is extremely overwhelmed.  We try libraries and playgrounds from time to time but those visits need to be short and well supervised.  As his twin sister also has special needs I can no longer take them both to the library or playground by myself due to his unpredictable behavior.  If she refuses to leave the library, he bites me and then runs off to bite another child while I’m picking her up.

Going to the dentist is a horror show.  Thus far, we’ve been using a dentist who does not put children to sleep.  From now on, we’ll be going elsewhere.  I’m physically incapable of holding him down without getting extremely bruised in the process.  Going to the doctor has been getting steadily better and his behavior is unpredictable—at times he’ll tantrum as we’re walking in and at other times he’ll play happily until he sees that he’s about to be examined.

As he is not yet toilet trained we are sitting him on the potty every hour on the hour.  He does not yet use the potty but he is now comfortable sitting there as long as we don’t ask him to perform.

After plenty of occupational therapy he is now extremely successful with bathtime and enjoys it.  Nail cutting, however, is still a massive challenge and a two adult effort.

At this time he has no problems with eating what is served to him although if he’d rather play than eat, he tantrums and requires a four minute time out in his room before he will buckle down to eat.

He is a good sleeper and sleeps through the night but usually takes a while to settle and runs around his room.  This is typically when he chooses to defecate so I go in and ask him if he needs a change and I change him.  THEN he goes to sleep.

Mothering this child is my greatest joy and my greatest challenge in life.  It’s very difficult to hire a babysitter or  leave him in a room unattended for a few minutes.  However, I need to make an income so I work at home.

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