The update….FINALLY

Okay, so I’ve done worse than neglecting this blog, I let it die.  But resuscitation is possible, right?

Roman is now done with the buspirone trial.  I look back on a year ago and remember a little boy who hardly even attempted to speak.  I reminisce about my son who was indifferent towards people, especially his peers.  I recall a child who didn’t see any use for imaginative play.   Today, that boy has changed.  I have a boy who tries to talk all the time.  He doesn’t get most of the words right, but he’s trying.  He interacts with his peers when prompted and has strong relationships with certain adults.  He plays with toy tractors instead of just spinning their wheels.  He likes Little People and Mr. Potato Head.  I don’t know if I can attribute it to the buspirone, and I realize that a portion of it is due to his excellent and intensive schooling.

There have been disappointments this year.  Roman is still in diapers 100% of the time.  He currently has no interest in using the bathroom.  The high hopes I had for intelligible speech have not been met.  But, after all is considered, we’re glad we did it.  We even opted to keep him on the buspirone indefinitely.

Roman’s life was changed a few months ago when we got him an iPad.  He was very advanced with PECS for his age, but he likes using the Proloquo2Go app better.  He uses it at home to request things all the time.  Instead of getting frustrated and throwing a fit when I ask him what he wants for a snack and he answers “ah” and I don’t understand, he sort of rolls his eyes and hops off the kitchen chair and retrieves his iPad.  He enters the Proloquo2Go app and navigates to the “food” section.  There, he simply hits the icon for “I want” followed by the icon for “apple” and the computerized voice announced “I want apple”.  He is rewarded with his apple, and I marvel as he enjoys the snack he just asked for.

He has other apps, mostly age appropriate educational games.  He has shown me that he knows his colors, matching (which he excels at), letters, numbers, picking out differences and puzzles.  I never knew that Roman was age appropriate or better in his learning until the iPad.  We knew that underneath the autism, we had a smart boy, but we never knew how much he was actually learning at school and at home.

I think the iPad is one of the most useful tools I have ever seen for children (and adults) with autism, especially those who are nonverbal or have speech difficulties.  PECS is an awesome system for communication, but for some reason, if you throw in the technology, some children are just more likely to use it.  Roman never had a problem using PECS, but I was always losing the laminated icons or forgetting to pull out his book and make him request using it.  He never really went to his PECS book unprompted for me, like he does with the iPad.  There’s just something about that tablet computer that bring out so much more in our boy than we ever did before.

So, in closing the update:  Yes, we’re glad we did the buspirone trial.  Roman has developed beyond our expectations.  And, get an iPad if you’re thinking about it.  You won’t regret it.

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So….Potty Training

Yeah, it’s not going well.

We’ve had a total of three successes.  That’s it.

ABA (Applied Behavioral Analysis, a type of autism therapy) specialists recommend taking an autistic child to the bathroom every 15 minutes.  Who has time for that when there are two other kids to take care of in the house?  My mom tells me of a success story that includes pushing water and other drinks and spending the day in the bathroom.  I just don’t see it happening.

But, we’ve had a minor success.  Roman will take his toilet icon off the bathroom door, where it is firmly attached with velcro, and bring it to me, meaning he wants to at least try.  He’ll stand at the toilet for a few seconds and then beg me to flush by pointing at the lever and then pointing at me saying, in his own way, that all he really wanted to do was watch swirling water work it’s way down the drain.

My mom asked me the other day if I was starting to think that Roman was on the placebo.  It’s been nearly four months and we’ll get a few words and then they’ll disappear into the depths of his brain, to maybe resurface weeks or months later, if at all.  The first few months were exciting, with new words and mild side effects.  Remember the drooling and chewing?  He’s since stopped both, thankfully.  The sleepless nights are still the bane of my existence.  So my answer to my mom, truthfully, was maybe.  He could be on a placebo.  His gains could completely be related to school, as they do an excellent job with him.

On a completely unrelated note, I’m completely giddy over something and I want to share it with the world, or at least the dozen or so readers of this blog.  In less than a week, I will be celebrating “Bye Bye Beardy”.  Eric has been growing a god-awful beard since November (or was it October? All I know is that it’s been way too long).  Roman likes the tickles that Eric gives him with it.  He may be the only one in the house to miss it.

The infamous beard. He's also been growing his hair out. Usually it's very close cut.

The beard is not just for aesthetics, or lack of.  Eric has been growing it as a fundraiser for cancer research.  He’s been taking donations for the sacrifice of his face.  On Tuesday, he’ll be shaving it off along with T.J. Duckett (a former Michigan State and NFL football player) and a handful of other guys.  I guess I’m proud of him, but nobody realizes my personal sacrifice of living with this beard for the past four or five months.  I need some recognition.

Roman may miss “Beardy” but I think he’ll adjust.


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He went in the potty!

Yesterday at school, Roman stayed dry the entire day.  One of the para educators (aides) decided to let Roman stand at the toilet.  I thought it was probably in vain, and for that time, it was.  But today, he was situated in front of the potty again and he actually WENT in it.  I wasn’t there, but i was told he was a little surprised, but then, when his aide went to lay him on the changing table later, he fussed and she stood him in front of the toilet again.  Nothing came out, but still he wanted to do it.

I’m all about potty training now.  I went ahead and ordered the “Once Upon a Potty” movie that Tycen loved when he was potty training.  I set out the potty that Roman’s grandma bought him awhile ago and set the stool in front of the big toilet.  I attached a PECS icon to the bathroom door.  We’re all set for some real potty training now!

Of course I had to call just about everyone in my phone directory.  I even called Roman’s Grandma Frohriep who is on vacation in Arizona.  She was talking to me about pee in the potty while sitting at White Sox training camp, watching batting practice.  I can just imagine the looks she got.

Then, I tweeted.  I kept going on and on.  My followers must have thought I was just a *tad* overzealous.  I posted on Facebook.  I posted on the Mom Squad, a forum I use throughout the day to keep in touch with my local mommy friends.  It may have been a bit much to announce a single successful urination with my entire social network, but I don’t care.  I’m such a proud mom.

I’ve been hearing that I shouldn’t expect miracles when it comes to potty training an autistic child.  To be fair, I don’t expect him to be dry starting tomorrow, but it’s a start, right?

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Night time Woes

For months now, Tycen has been complaining about sleeping with Roman.

“He kicks.”

“He snores.”

“He jumps on me.”

“He wakes me up at night when he wakes up.”

We have three children and a three bedroom house.  Since Eric and I are not willing to permanently move to the couches, that means that someone has to share a bedroom.  The most obvious choice, since we have two boys and a girl, was to have the boys share a room.  Unfortunately, Roman is like many other children with autism in that he doesn’t have the best sleeping habits.

He kicks.

He snores.

He jumps on his brother.

He wakes up all night long.

Recently, we’ve been noticing behavioral problems and tics in Tycen.  Tycen was once diagnosed with Asperger’s, but later a psychiatrist questioned the diagnosis and instead labeled him ADHD.  We were getting to the point of maybe putting him on ADHD medication.  But then, we wondered if it wasn’t a lack of sleep.  Finally, his sister agreed to share her room with him.  A week ago, we moved Tycen into Tanis’s room to sleep.  Suddenly, he was not as cranky, his impulse control got better and his tics even started to subside.

With one problem solved, another arose.  Roman not only has trouble falling asleep and staying asleep, but he seems to be distressed to sleep alone.  Every night since Tycen left, Roman wakes at around midnight, just as I have been asleep for a good half hour, crying for me.  Some nights,  I would bring him to bed with me and the dogs and Eric would retire to the couch.  Other nights, Eric would take him to the living room and the two of them would sleep on the couches.  If we failed to do one or the other, Roman would continue to scream and cry for me, apparently meaning either Eric or I since “MOM MOM MOM” seems to mean anyone who will listen.

It’s like living with a newborn all over again.  We thought we were out of this phase.  Neither of us has had much sleep in the past week and it’s really starting to wear on us.  As I sit here at the keyboard, I’m nearly falling asleep.  I just don’t know what to do.  It’s impossible to get a good night’s sleep with Roman at my side.


He kicks.

He snores.

He jumps on me.

He wakes up all night long.

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The Monthly Visit

We had Roman’s monthly visit at Children’s Hospital to have him checked out and get his meds for the next month last week.  It included the bimonthly blood draw.  He was not very excited by the notion.  We had to pin him on the bed while his blood (slowly) filled three vials.  Poor guy.  The nurse checked his vitals, gave us the medicine and sent us on our way.  The visit took a whole 45 minutes, but the drive took two hours each way.  Fun times, let me tell you.

We did receive the report from the psychologists and psychiatrist who tested Roman when the study started at his baseline visit.  His performance had gone up since the last time he had the some of the testing done.  The first section of the report went over the Vineland Adaptive Behavior Scale.  He scored overall in the moderately low range.  All of the categories except written communication and motor skills were below the adequate range.  In particular, the receptive and expressive categories rated his age equivalent at 1 year and 3 months to 1 year and 4 months.

The next portion of the testing was the Autism Diagnostic Interview.  Back in November, I was interviewed for a good hour and a half.  The summary of this interview was simply that Roman met the cutoffs for a classification of autism in the areas of communication, social interaction, restricted and repetitive behavior.  Well, duh.

The rest was more of the same.  Not that I expected any different, I guess.  How many times can you be told your child has autism?  Okay, I believe it already.

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Lucky, lucky us

No, I don’t mean that facetiously.  We are lucky.  We are extremely lucky that we live where we do.  For four years, we tried to sell our house so we could move to Eaton Rapids, where Eric teaches.  It just didn’t make sense to us to have Eric driving forty five minutes each way every day to go to work when I wasn’t working.  When we bought our house, I was working on the west side of Grand Rapids, so we decided to settle in Portland, the half way point between our two employers.  Then, Tycen was born and we decided that I would stay home.  For a few years, Eric made the trek without complaint every day.  Then, we started thinking about school for Tycen and his sister, who I was pregnant for.  We wanted them to go to school in the district that Eric taught in.  It only made sense.

Then, Tycen started school in the Michigan Readiness Program when he was turning four.  we decided to send him to Eaton Rapids with his dad.  It was our intention to have all the children go to Eaton Rapids via school of choice until we could sell our house.  But the economy and fate stepped in.  Roman started the Early On program in Ionia County, which is for children birth to age 3.  After that he graduated into Early Childhood Special education at the Portland School district.  It took us only a few weeks to realize that there must have been divine intervention involved because Roman was truly in the right place.

I’ve mentioned Roman’s aide, or paraeducator, before, but that’s just the beginning of the support structure he has in place.  Katie has an ASD (autism spectrum disorder) mentor who acts as a liaison between Katie and the intermediate school district.  This mentor offers support to Katie in training her and working with Roman.  This mentor has been very open with communication with me and keeps me abreast of all the new training Roman is receiving.  She’s the one who sent me the video I posted yesterday.  I’ve been told that Ionia County is the only county in Michigan that has such a structure and I can see the difference that it makes in Roman.

Not only does Portland have this unique structure within the Ionia Intermediate School District, but it also has an excellent Early Childhood Special Education teacher.  I was a bit apprehensive as the year started, as the teacher was just hired for this school year.  Another teacher had taught for a number of years and decided to move up to second grade.  I had met the precious teacher and liked her.  I just didn’t know who Roman was going to end up with.  Within a few weeks, my fears were put to rest and I realized that Portland really knows how to hire teachers.

Then there are the therapists.  Roman has excellent therapists that work with him throughout the school day.  His speech therapist has been nothing but helpful with me and she is working wonders with Roman.  The same could be said for his physical and occupational therapists.  All of them are always willing to talk to me about concerns I have.  They are all wonderful.

I was extremely apprehensive to put Roman in school full time, five days a week when the school year started.  After all, my five year old was only going to half day kindergarten and Roman wasn’t even three when the year started.  But here we are, over halfway through the year and I know that we, as an educational team, have made the right decision.

And that’s why I know, in my heart, that we could never sell our house.  There were greater powers at work.  All three of my children now attend Portland Schools and all are thriving.

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He’s come so far

I got this video today in my email from the school.  One of the many people who works with Roman sent it to me.  I just can’t believe what they’ve done with him using his PECS book.  He’s learned a completely alternate way to communicate and he’s really good at it.  I’m so proud of my little guy.

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When I’m Gone

I’ve been thinking a lot about what would happen to my kids if Eric and I should meet an untimely end together.  Besides Roman, I have two other children, one with special needs.  Tycen has Neurofibromatosis which has led to bone deformities, tumors, and other issues.  He sees several different doctors for his various conditions related to NF.  He already had several surgeries and has more in the future.

So, who would take care of my kids?  I have seen only one option.  I won’t name that option by name because we have never approached them about such a situation.  I suppose we should.  Who knows?  Maybe they think they couldn’t handle it.  I wouldn’t blame them.  This is not an easy life sometimes, and I’m sure that as Roman gets older, fighting for his needs to be met at school may become more difficult.  But my greatest fear is that my children will be separated from each other if anything happens to both Eric and I.  And to care for all three is quite the task.  I just hope that someone is willing to take it on.

And what if Eric is left to care for our children on his own?  How would he handle that?  I have no idea.  I’m sure that some family would step up to help for awhile and I hope that they would stick around to help on a regular basis.  But they all have their own lives, too.

I read somewhere that 80% of autistic adults still live with their parents or a caregiver.  Is this Roman’s future?  If it is, at some point, he’ll likely outlive both Eric and I.  What then?  What if he can’t live on his own?  Will his sister, or brother, become his caregiver?  Is that fair to them?

I fully intend to make sure that Roman isn’t in the greater part of that statistic.  It’s my goal to teach him to be a self sufficient adult who can live on his own.  That’s what we’re supposed to do, right?  Teach them to fly and let them go.  But what if that’s not Roman’s future?  What then?

The way I see it, there is only one option; immortality.  That’ll work, right?

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Ode to Katie

I want to put this out there:  Roman and I really like Katie.  She is his aide at school.  Katie’s full-time job is to be focused on Roman and his education.  Katie does Roman’s sensory exercises with him everyday, communicates with him using his PECS book, helps him adjust to changes at school and even gets the glorious job of changing his diapers.  Basically, Katie is me at school.

When school started, we didn’t know what we were going to get as far as an aide goes.  I didn’t know how interested a complete stranger could ever be in Roman and his education.  But I have to say that the Ionia County Intermediate School District really knows how to hire ’em.  It’s not just Katie.  All the aides really seem to have their stuff together.  They’re all easy to talk to and they genuinely seem to like their jobs and their charges.

It’s hard to believe, as the parent of an autistic child, that someone besides yourself can get past the difficulties of dealing with your child to really care about them and their education, but I have met such people and they’re godsends.  I have a friend who has an older child with a different disability who has horror stories to tell of aides that just don’t care and are just there to waste time and collect a paycheck.  I can’t tell you how fortunate I feel to not be in the same situation as my friend.

I’m not the only one who feels this way.  Yesterday, after two days off due to snow, I marched Roman in to his classroom to start his day.  Every day, Katie meets us with Roman’s schedule in hand.  He knows the routine, first the backpack comes off, then the coat, boots, snowpants, etc.  Every time a new piece of clothing is shed, he grabs the icon for that item and takes it from the schedule and puts it in the “done” pocket.  Midway through the routine, Roman made a move to hug his aide and then, as both of us can attest to, he said “Katie”.  He has never named a person outside of his immediate family before except for once or twice that we’ve heard him say something that resembled “Grandpa”.  I think that means he approves of his appointed aide and really does care about her.

I know that Katie is probably reading this and I’m glad.  It’s hard to express my gratitude in the few minutes we have while running after Roman together in the morning and after school.  Thank you Katie.  Roman and I are both glad you’re at his side.

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Quirky Sandals

For those with autism, quirks are a natural thing.  Even those of us in the neurotypical population have our oddities.  For example, I must wake up to a coffee mug full or Diet Mountain Dew.  I know, I know, it’s gross to some, but it gets me going, and getting going is a necessity when you’ve got three kids under eight to get ready for school every weekday.  It gets me through the daily grind of breakfast, remembering Roman’s medicine, feeding the cat,  bundling the kids up in their snow clothes and heading out the door to pile in to the car.

Roman has a new quirk.  He must wear his sandals around the house.  Socks are optional.  As soon as he eats his breakfast and settles in to watch TV for a half hour before heading off to school, he’s got his sandals in hand, asking anyone close enough to velcro them on.

Roman models his favorite at home accessory, his Teva sandals.  He could have worse quirks, that’s for sure.  As a matter of fact, he has others that get a little annoying.  He picks certain foods off his plate and sets them on the table, saving them for last in his daily meals.  Yesterday, it was the green peppers in his venison concoction.  He diligently picked out every cooked green pepper and set it on the table adjacent to his plate before digging in to his meat, corn, and cooked carrots.  At the end of the meal, he ate every piece of green pepper that sat on the table.  Weird to the rest of us, it makes perfect sense to Roman for some reason.

New quirks surface all the time.  The sandals are just the newest in a string of oddities.  But they make life interesting and make Roman who he is.  And that is a very special kid who’s easy to get along with and even easier to love.

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