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

Archive for the ‘Twin’ Category

Support Groups ROCK

I’m in three, count em, THREE support groups.  Actually more than that if you want to count the facebook groups I’m in.

#1 is an email only group for moms of kids with adhd.

#2 is an every other Tuesday moms group via the local Jewish special needs group.

#3 is a six week Tuesday evening group at the local autism center.  The second session is tomorrow night—- this one costs money but our insurance covers it.  Whammo!

Just for kicks I’m posting here one of the posts I sent to group #1.  This will give you a glimpse into our lives.  I took out all identifying names.

——-

hi everyone!
 
______, you are so lucky that you were able to do build a bear and mini golf and fun and stuff, etc etc.  My kids can’t handle most of that stuff and anytime we’re invited to ANYTHING we seriously consider whether we’re going to go and how much support we’ll need to be able to go (come late, leave early, bring lovies, bring pecs, is there a quiet hallway to escape to, do we need strollers, etc etc etc).  I blogged about that actually.  https://sortedmegablocks.wordpress.com/2011/10/17/autism-awareness-in-the-jewish-community/
 
So here’s what’s going on in our lives lately—- the center for autism wants both my kids to have ABA.  ABA isn’t offered in public school.  If you want to get an ABA based curriculum at ___________it comes with a pricetag of $70,000 and the autism scholarship only covers $20,000 of it.  So I figured ANYTHING but public school was financially out of reach for us at this point.  But I’ve been doing research.  I blogged about our big kindergarten school decision.  I found a “free” ABA based program.   neither of our twins will be toilet trained by kindergarten, both (one more than the other) need ABA…… 
https://sortedmegablocks.wordpress.com/2011/11/04/anyone-have-a-crystal-ball/

By the way, if you’re new to my blog, Fred is _____ and Wilma is ________— I don’t use our real names on the blog.  🙂
 
As far as ______ and her ADHD——  far above the hypotonia and the pdd-nos, the adhd is now the stumbling block to potty training.  I have her completely potty conditioned—- *I* sit her on the potty once an hour every hour and she pees.  But if she needs to go at another time (she has a lot of juice and I don’t sit her down 15 minutes later), she doesn’t tell me, she doesn’t go, and she simply wets herself— pullup, underpants, whatever— she doesn’t care— not only that, but she thinks it’s funny.  “look mommy, I wet myself!”.  So I calmly clean her up and say next time you’ll put your pee pee in the_______  (and wait for her to say potty) and with a BIG GRIN she says “in my PULLUP!”  or “ON THE FLOOR”!  She thinks she’s so amusing.  Seems to be the adhd.  I don’t know how to get over this hump because bribes, charts, and taking away priveliges for wet pullups aren’t working.  No success at all with #2—- she NEVER puts that in the potty.  And NO success at school—- she refuses to USE the toilet at school— she just SITS on it.  School has prizes ready for her and stuff I sent from home too.  She doesn’t care.  We’ve got laminated social stories complete with pictures of her sitting on the potty— it’s ridiculous.
 
her clonidine has helped her tantrums, certainly, but it’s making her super tired.  She naps 3-4 mornings a week now.  (preschool is afternoons only 12:30 to 3:30)   But that’s better than non stop screaming.  Gotta get her a good psychiatrist– the neurologist doesn’t want to handle med mangement for the adhd AND the pdd-nos and frankly I need someone who can really dig deep into ____’s whole case and maybe change her med completely at this point.  Any recommendations for a psychiatrist for a 4 year old?
 
And then there’s brother bear.  No ADHD, but the autism is getting worse, NOT better.  He *IS* verbal, which is a bracha, but it’s also a curse.  We’ve been denied SSI because he’s “too high functioning”.  We’ve been denied extra respite because he’s “too high functioning”.  I can’t take him and ______ together anywhere by myself except somewhere with a cart where I can contain one of them to keep them apart.  At home, I send him to his room to get him away from _______ (and he’s HAPPY to be there).  But out in public when she whines and he bites her and I’m alone with them trying to pay for groceries,  well, it’s fun times.  I have a lot of trouble walking them both from the car into an office or store— she flops down and refuses to walk if she’s tired or ornery.  If I pick her up, he gets upset and bites me.  So you’ll see me in a parking lot holding both their hands just standing there while he’s screaming and trying to bite me and she’s flopped down not moving and I’m (patiently) waiting for her to get up.  Some days I feel like toilet training is the least of our issues but I know that toilet training is the benchmark which will eventually enable one or both kids to mainstream.  But they’re about to turn 5 so I’ll have two 5 year olds who aren’t toilet trained and can’t dress themselves and have massive problems with self regulation.  And I can’t get government programs or SSI, so everyone thinks I can raise them with only part time preschool WHILE making a full time income because chas v’shalom there be a job out there for my husband with enough money to support a family.  Good luck to me—- I’m working at MIDNIGHT via internet— it’s insane.
 
I’m feeling very STUCK between the worlds of neurotypical and special needs.  If my kids were neurotypical they’d be toilet trained, they’d be at __________, I’d be able to work a decent number of hours, and things would be calmer.  If they were special needs ENOUGH, the district would pay to send them to ______ or another ABA based program, they’d be in a very intense enviornment all day, we’d be getting SSI and a decent amount of respite funds, and things would be calmer.  As it is, they’re too special needs for a neurotypical environment, and not quite special needs enough to get the help we truly need.   I think this feeling is common for moms of adhd kids, but in my case I’ve got the ASD stuff too and I still feel it.  Just thought I’d throw that out there– anyone feeling what I mean?  Most of your kids ARE neurotypical ENOUGH to be at a Jewish day school, but I know some of you are feeling like they don’t fit in there— but certainly they wouldn’t fit in in a special ed program either……  it’s tough!
 
Sorry for the novel…….  I have a LOT of thoughts lately!

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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Sweating Through a Parking Lot

Everytime I take my kids by myself somewhere, I have to plan ahead.  Will Wilma flop down in the middle of the parking lot and refuse to walk?  If I’m alone with her I can pick her up.  But if Fred 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 walks 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 EEG, an MRI, 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 grocery store— 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 grace of God, 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 biting, what is going ON with her parenting skills?  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.

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WHY SortedMegablocks?

I have three other blogs– everyone knows the blogs are mine, there’s nothing private about them, and the purpose of those blogs is strictly business.  Everytime I make a post on one of my blogs I think that I REALLY should be blogging about my personal life— the life that revolves around Orthodox Judaism and special needs twins.  There’s a lot that is really unique to our situation that I think can inspire and help other families.  At the same time, blogging will help me cope.  I’ve been more and more overwhelmed over the past year or so, and joining the ASD blogging community and being a part of a network of families struggling with similar issues will surely be helpful.  I’m on a couple of facebook autism groups and they’re very helpful.  But I haven’t shared my entire story.  So bit by bit, as time permits, I’ll share it here.

The name of the blog represents the first moment I knew that either of my children has an ASD.  My son, “Fred”, who is now 4 and a half, was sorting his megablocks by color at thirteen months.   Yellow ones here, Red ones there, Blue ones there.  When I would move one to try to show him how to stack them, he’d cry.  He had always been a lot more intense than his twin sister and had a lot of funny quirks.  A little over half a year later, he ended up with his provisional diagnosis.  We didn’t do his official diagnosis until this year because hey— if it walks like a duck and quacks like a duck, treat it like a duck.  He was already in special education, occupational therapy and speech therapy.  Since we weren’t yet ready for anything requiring special funding (our state has special funding for autism schools, OR for one on one aides to help mainstream at typical schools– but in order to access the funds you need to be outside of public school.  So far, my twins have been in public school)– he didn’t NEED a diagnosis.  For various reasons (for a future post!)– he needs one now.

“Wilma” was the reason the county’s program for special needs 0-3 year olds kept giving us home visits during the twins’ first year.  She was hypotonic and delayed in all of her milestones.  She didn’t even cry for a long while— she had an insistent little squeak.  If her twin brother hadn’t been insanely loud, we may have slept through some of those middle of the night feedings.  She was an incredibly easy baby.  And then the twins turned one, and all of our attention began to turn to her brother.  We thought we had a handle on her special needs:  hypotonia and a speech delay.  We still had no inkling that she could be on the spectrum.  Age two, age three, same thing.  We figured we had a son with autism and a daughter with hypotonia and a speech delay.  Until age three, we didn’t feel she showed any of the signs of autism.  Age three, she also landed in public school on an IEP due to her being behind in so many areas with the gross motor, the fine motor, the speech….. but she was still our social butterfly, having learned to clap and wave and talk to peers long before her twin— autism didn’t even cross my mind.  She was in special education, physical therapy, speech therapy, and occupational therapy, but I still had the optimistic hope that once she catches up with some of her essential skills, she’ll end up fairly neurotypical.

A year and a half later, and I can look back at her journey from age three to age four and a half and see her spectrum behaviors getting more and more intense.  It took me many months to recognize her behaviors as being spectrum related.  For many months I was saying “well, she’s got hypotonia, a speech delay, and SOMETHING else— probably adhd”.  So we got her diagnosed with adhd— through the process of THAT diagnosis, I discovered that she is also on the spectrum.  More on that journey in future posts.

I’m looking forward to the journey of sharing our story through my words.  Please keep our identity private.  My facebook friends will know that this is my blog, but the general blogging community or anyone finding this blog on the internet will know my children as “Fred” and “Wilma”.   Stay tuned for more!

 

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