Panic

September 14, 2010

I’m having a hard time shaking the sad today.

Pretty much every morning going to school and church Hamhock says he doesn’t want to go and resists in all sorts of creative and various ways.  We deal with it by planning the mornings as best we can to accommodate the length of time it takes to get him fed, dressed, shoes on, and locked & loaded in the car to go.  Most of the time we’re late, sometimes we’re there on time, and sometimes we skip it all together.  But usually once he is wherever we are, he is fine and gets excited by all the stimulation and has a good time (even church. . .!!!).

This morning. . . not so much.  Ugh.

He.  Did.  Not.  Want.  To.  Go.  To.  School.

He had a 3-day weekend.  Tomorrow’s a field trip.  He made a new buddy last week. Lots of fun to look forward to.

Nothing.

I suspect that Moms of kids who are not strong-willed (no matter the cause – ASD, ADD, ODD, etc) often don’t seem to comprehend why you can’t just *make* your child go.  (At least that’s what it feels like when they tell me how *they* would do such-and-such).  Well, here’s how it goes when I try that approach:

I got Hamhock fed & clothed, with backpack ready.  He climbed on top of the roof of the car and said he wouldn’t go.  Normally he’s been responding to my 1-2-3 and time-out approach, but he ignored that this morning.  I kept trying to assuage his concerns, or answer his counter-arguments, and he kept digging in his heels.

It’s at this point that I get panicky.  It’s a feeling of complete panic, that I have no idea how to “make” my child get himself to school.  None.  It’s a feeling of complete out-of-control-ness.  And I hate it.

So. . . I said that if he didn’t start scootering/walking/biking to school that I would carry him there.  So I physically pulled him from off the top of the roof, carried him down the driveway to show him I meant business.

WRONG APPROACH, MAMA!

He simply started hitting and scratching and kicking me.  Just like a toddler.  I set him down and he started bawling and tried to run away.  So I chased him down to the corner and led him back to the car.  Then I just start ordering everyone around while raising my voice.  Remember out-of-control?  Panicky?  Yeah, that’s what it sounds like.

Finally he’s in the car and we’re driving.  He tells me he doesn’t want to get a “Think Time” (a time-out) for breaking a rule.  I reassure him that his teacher likes him and hasn’t given him one at all because he’s been following the rules every day.  He got one from different first-grade teacher (from the first grade pod) the first week for laughing at some other boys goofing around in bathroom (at least that’s *his* version of the story).  He doesn’t like the teacher who gave it to him.

Aha!  He’s feeling anxiety about an unresolved issue!  (Why can’t people just tell you what they’re *really* worried about?)  Makes sense. . . we had a few incidents last year where he’d get into a fight/misunderstanding/power struggle with another kid and if I went to ask both kids to say sorry and I forgive you, Hamhock would be good & could move on.  He needed to have some closure about this.

Duh.  I didn’t think about it.  Man, parenthood is tough.

Luckily, this teacher happened to be standing right by the door when I walked Hamhock to class, and he saw me start to talk to her.  She was very nice and understanding and wants kids to learn and follow the rules, but doesn’t want kids to be scared of her.  She said she would try to talk to him to clear the air about it.

Every day so far he has been very happy to see me when I pick him up after school and says:  “Mom, I didn’t get in trouble today!”  I hope today will be no different.

I just hate when it takes me a while to figure things out, when I don’t handle power struggles better, and when I feel sad the rest of the day. . .think I’m going to go get in a run, watch some Arrested Development, and clear my head before school is out. . .

________________

UPDATE:

Hamhock came home very happy.  He said the teacher talked to him and:  “She likes me Mom!”

I thanked her the next day, and all seems to have returned to right in his cute little brain.

Whew.

Goodbye to shorts pants

June 29, 2010

Hamhock’s autism often exhibits in rigid behaviors that he gets fixated on, and won’t give up for an extended period of time or without a huge, hours-long/days-long tantrum.

One of those behaviors has to do with clothing.

Most likely it is due to sensory issues, that he finds certain clothing more comfortable or familiar, and just doesn’t want to wear anything else.

When he was 2 1/2, he would wear a size 3T onesie that I had.  All. The. Time.  He looked so silly to others (I have no doubt), although he looked really adorable to me.


Right now he *looooooooooves* and *must* wear only his socks wherever he can.  Socks only.  No shoes.  (Except when forced to like in church or at school).  Needless to say, I go through a lot of packages as he wears them out with big holes – on a daily basis.

A few months ago he found an old pair of Superboy’s size 3T sweatpants.  Hamhock is 6 1/2, and wears size 7 pants.  He’s definitely taller than most kids his age.  Wearing a size 3T sweatpants.  Yeah – nice.

He insisted on wearing these affectionately dubbed “shorts pants” as much as he could.  I picked and chose my battles when I needed to enforce ripping them off his legs.  For example, I would let him wear them under his church pants if I didn’t have time or energy to deal with the resulting tantrum.

Finally, one day, I noticed that “shorts pants” just had waaaaaaaaay too many holes in the knees.  It was time to prepare Hamhock to say goodbye to “shorts pants.”

I prepared him for several days letting him know that we needed to say goodbye to “shorts pants.”  He had too many holes and needed to go up to Heaven to live.

Hamhock was down with it.  He decided we needed to burn “shorts pants” in the grill with another shirt and some beloved socks to have some company in Heaven, and Hamhock would see him up there one day.

So, we did it.  “Shorts pants” was ceremoniously burned, after much hugging and kissing and saying “Goodbye shorts pants, you’re a good boy.  Take care of Fiona in Heaven.”

Goodbye “shorts pants,” RIP.

I can read!

January 16, 2010

Hamhock read his first book this week!  And, Superboy followed right along.

Mrs. Larson started sending home this week these little books for the Kindergartners to read and check off.  Like always, my anxiety hits, and I was nervous how to get starated because we of course have a bit of a struggle to do homework (thanks to Foo, it’s been going better – dads rock!).

Well, Hamhock was excited to read it!  We’re working on only 3 words so far:  I, See & Sam.  He read all 6-8 pages of the story using those three words, and I couldn’t have been prouder!  Then, Superboy read it too, (which is great, to have Superboy follow along as I struggle to do these things with Hamhock).

It made up for my feeling like Lousy Parent #1 this Monday when karate so did not go well.

We left early because Hamhock was about to meltdown for not getting a sticker because he moved during the “focus your body” exercise.  Superboy was his typical silly little goofball,  – not paying attention, making other kids act goofy.

ARRRGGGHHH!  I just hate being in those situations where you feel like every other parent is looking at you (because you’re the loudest thing in the room) and probably feeling grateful they’re not me, and you feel like such a sore thumb.  Of course I went home and cried all night.  Karate instructor was not worried, though.  He said Superboy’s the youngest in the class, and he’s willing to be totally flexible with Hamhock, and for me to  just stay consistent.

Tantrum Time

December 22, 2009

This time, it was Superboy. We’re talking a very intense, rigid, non-negotiable all-out 4-year old tantrum.

Hamhock had parent teacher conferences with no school.  I wanted to drop Superboy off at preschool, and go to Hamhock’s classroom for the P/T conf.  Superboy knew what was going on, and he wanted nothing of it.  He dug his heels in and refused to go to preschool.  I realize that sometimes/often I have less patience for Superboy because I “expect” him to comply because he doesn’t have the nerological deficits that belong to ASD.

I finally dropped him off, heaving and with tears streaming down his face, with the preschool teacher.

But, I felt bad about it all day.  The intense, angry, panicky emotions I feel in those moments are just so horrible.  It makes me feel so out of control, while I was raising my voice to get Superboy to calm down and go to class, but my head is telling me to *not* raise my voice.  Hamhock kind of freaks out in those situations and he’ll start hitting me to stop me from getting angry at Superboy.

In this instance, it was all in front of the elementary school in the playyard.  Ugh.

Superboy’s got a tough road.  Hamhock is intense and demanding and bossy, all as wonderful benefits of having a brain wired with ASD.  Superboy loves and looks up to him as little brothers do.  We expect more of Superboy, and are probably more lenient with Hamhock as we pick and choose which battles to fight.  It’s tough.

I’ve noticed that Superboy wants to follow Hamhock’s lead.  Hamhock says he doesn’t want to go to school?  Superboy says he doesn’t want to go to school.

I just hope both of my boys will someday forgive me for the mistakes I make, and have good lives in spite of my shortcomings as a parent.

Mom? What?!?!

August 15, 2009

Here’s Superboy lately:

Sb:  “Mom?”

Me:  “What?”

Sb:  (4-year old babbling)

Sb:  “Mom?”

Me:  “I’m right here.”

Sb:  (More 4-year old babbling)

Sb:  “Mom?”

Me:  (Waiting for his commentary)

Sb:  “MOM?!?!?!”

Me:  (Sigh).  “I’m right here, I can hear you.”

Sb:  (More 4-year old babbling)

Why does it get annoying?  It’s normal, healthy and appropriate speech-related development for a kid.  Yet it grates on my nerves.

And yet, I would literally give my eye-teeth if Hamhock would annoy me.  Just.  Like.  That.

Mother at the Swings

October 2, 2008

For all my friends who are “mothers at the swings:” (Warning: this will choke you up.)

The Mother at the Swings

by Vicki Forman

It’s a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I’m swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, “Boy, he really loves that, doesn’t he? I mean, kids just love to swing, don’t they?”

Yes, I think, kids do love to swing. But the reason my son loves to swing isn’t the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed “sensory integration dysfunction” and requires enhanced “vestibular input.” Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

“He really loves to go high,” the mother at the swings says. “He’s not afraid at all.”

“He’s not afraid because he can’t see,” I say. “He has no idea how high he’s swinging.”

“Well, he must have other ways of knowing,” she says. “Because he definitely loves it.”

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two — variations on “muh muh” — which he uses indiscriminately for “more” or “mama” or “open.” I have watched my friends’ newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were “rocks” could unexpectedly turn out to be “gingerbread men.” Just like the story, they run, run as fast as they can from you when they hear of your baby’s birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan’s disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker’s handout: the mother at the swings.

The mother at the swings wants to know. It’s why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it’s like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She’d like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn’t know how to ask. And so she tells me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it’s hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can’t do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother’s curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

I am positive that is exactly what another mom was whispering about me to her husband at the Children’s Museum yesterday.

As I tried to inch closer so I could make out what she was saying, she stopped talking and moved away, so it pretty much confirmed that was exactly her topic of conversation. Then they quickly left the area.

Yes, I’m a little mad.

I was already thinking of things I wanted to say to her, but they all involved using Jenny McCarthy language (i.e. the “f” word), so I refrained b/c that’s just not cool, especially around kids.

What happened, was this: We went out to play on the helicopter. Hamhock jumped to play in the cockpit with another boy about age 5. There were no other kids waiting in line, and Superboy was playing inside the cabin of the helicopter.

The other 5 year old boy started shouting into the intercom to his friend in the control tower “shut up” and other such boy shouts. Well, Hamhock LOVES to say shut up (for any UCB fans, think:  Matt Walsh in the Shut Up Sketch), so he was all over this. He starts shouting “shut up” with the boy and the boy was really sweet and played with him, too. It was really cute. I was watching this whole interaction thinking, if I were a “normal” mom, I would tell my child to not use that language. But, I don’t have the luxury to be a “normal” mom. I was glad that Hamhock was communicating and interacting with another kid, and that the kid was sweet and could relate on his level. Most other kids just stare at his lack of verbal/social skills and walk away. This kid definitely was having fun shouting into the intercom, and welcomed the attention Hamhock was giving him.

Foo & I have tried in vain to help Hamhock say other words instead of “shut up” but nothing has worked. This is a kid who has barely been speaking a year ago. He definitely doesn’t understand the subtleties of language, why you would say one thing but not another. So we just ignore the behavior, not drawing any attention to it, hoping that it will be a phase that will disappear as he learns more.

So, I was standing there I admit in a bit of a stupor, partly mesmerized by the interactive play, and partly mesmerized by my lack of sleep all week. All of a sudden I noticed a mom standing next to us who began to steer her daughter away from the cockpit while saying: “We’ll come back in a minute to play in the cockpit.” I didn’t notice how long they had been standing there, wanting to play in the cockpit, or I would have had Hamhock move. She also didn’t ask whether her daughter could have a turn.

Shortly thereafter several other kids came to play, so I had Hamhock sit in the middle while other kids had a chance to sit in the two cockpit seats. No one else had a problem, and other kids were getting their turns.

Finally, Superboy had his turn in one of the cockpit seats, and as soon as I noticed a boy who wanted a turn, I picked Superboy up to let the boy have a chance. Superboy’s seat was empty, Hamhock was in the middle, and some other kid was sitting in the first seat. Well, this mom didn’t see me make room for her boy, and she said her boy something like: “this mom doesn’t know how to share” and then she walked away. She was so intent on complaining to her boy, that she couldn’t even hear me telling them the seat was open. I almost shouted to the boy while pointing to him, and he finally looked directly at me and then immediately ran over to the cock pit seat, while the mom huffed off.

That’s when I saw her gossiping to her husband about what a terrible mom I am. I inched closer so I could somehow have an opening to explain what was going on (minus the “f” word). But she and her husband scuttled away before I could.

It’s just as well. When I’m tired, I cry a lot easier. That’s the last thing I want, to be a blubbering mess at the helicopter in the Children’s Museum.

The Wall of Autism

May 21, 2008

. . .stops me cold.

For example, you try to engage Hamhock in conversation about something you’d like to talk about, or think he might be interested it.  He doesn’t respond, ignores you, or plays with something else.  You stop trying to engage him about that thing and roll with what he’s interested in.

It’s good to take his interests and expand on them, and many therapy protocols teach you to do just that.  But what happens when you try to bring him into your world, introduce him just a bit to something new, and try to bridge that gap between his world and ours?

Well, it’s the Wall of Autism.

I realized this in Foo’s & my discussion with Scott our RDI Consultant last Thursday night, learning about dynamic conversation.  Most conversation takes on a declarative format; you say something – throw it out there, and expect it to be picked up and responded to someway, somehow.  Only maybe 20% of natural communication takes on an imperative format, where you actually directly TELL someone to do something.

Scott made the comment that our parenting styles have picked up coping mechanisms to compensate for Hamhock’s social/language/communication delays, and we inadvertently may be reinforcing those autistic static tendencies in Hamhock’s communication, rather than trying to teach and help him learn more dynamic ways of communication.

I realized then that I give Autism what Autism wants.  

It’s just easier to let Autism have its way.

In our free play time, I realized I’m not naturally the mom who requires her son to push through and do what she knows is best for him.  Mostly because I’m not sure HOW to do that.  I spend most of my energy working for, paying for, hiring for, planning for, buying supplies for, managing tutors for, and managing programs for his ABA program, that I realized I didn’t learn other techniques during our free play time. (Although, shouldn’t it be just that:  free time?)  Of course I buy the crafts, the games, the toys, and we go to the Children’s Museum, the park, or store. But that’s not enough.

For example, what mostly happens during our free play time is this:  Hamhock has his idea of what he wants to do.  He wants to involve us in that idea, as far as his requirements go, and as far as we can be “tools” to achieve those requirements.  This ends up in me dragging around Superboy, following Hamhock around as we literally troll the neighborhood.  Ask my friend Karen, her mom lives across our street, and she sees the trolling in action.

Yesterday I put the bike seat on the back of my bike, thinking maybe we could bike around and have some fun with Hamhock’s new Spider-man bike.  For the first 15 minutes, it was OK.  We biked around the cul-de-sac.  But then Hamhock decides he’s done and literally won’t get back on his bike.  We’re a block away from home, and he’s just dragging along.  Nothing I do or say is helping him understand that we need to bike home.  We do our share of exploring what catches his attention, including neighbor’s back yards, etc., and slowly making our way home.  Finally I had to prop Eric up securely, and walk with Hamhock and his bike to the next street before he could see our street so he would get back on the bike to bike home.  This is fine, something every mom has to do in various ways with her kids, but anything like this just reminds me of the deficits we’ve got to overcome.

This shuts me down.

It makes me sad that every interaction is stunted, blocked, different.  I know I haven’t learned the right skills and techniques to interact and teach and help Hamhock in free play.  I need to learn some new skills.  This is where I’m hoping the RDI comes in.  I’m hoping it will give me and Foo the foundation to break through that wall and get some real therapeutic teaching done during our free play days.

Ditch the guilt

May 10, 2008

So. . . I’ve decided to ditch the guilt.

At least, until we’re done with RDI training.

Backstory: We’re in-between 2 different therapy programs, and so any non-therapy time usually leaves me feeling guilty that we are wasting precious brain-rewiring time, sad that I don’t know how to better interact with Hamhock, and frustrated that it’s very difficult to schedule fun activities with both Hamhock and Superboy.

Backstory, detailed: We’ve lost two of Hamhock’s ABA therapists (summer internship and grad school), and we’re not hiring any replacements because Foo & I decided to pursue RDI Therapy. Thus, we went from 36 hours/week of ABA Therapy to 21 hours/week, and at the beginning of June we’ll be down to 15 hours/week. We won’t be done with RDI training until at least mid- to the end of June. This leaves a lot of down-time in between the two.

In spite of that. . .guilt has been ditched. Movies and videos are being watched. New Ironman and Superman toys are being bought. Water guns are being played with.

A more calm mommy has been achieved.

Let’s hope this stays for another 6-8 weeks. Gulp.

I guess Foo & I haven’t quite “accepted” the autism yet.

We’re still frustrated, angry, grumpy, tired, stressed, stretched thin, worried, anxious.

I remember meeting families with children with special needs in the past and thinking: “Geesh, just quit worrying about it so much.”

Now I understand.

There’s a problem, so all you do is worry. Maybe you stop worrying when you’re older, when “nothing more” can be done, when you’re dead?

It’s not just “the diagnosis.” It’s your kid, your life, everything you ever wanted, expected, desired.

Also the challenges created by the autism make life difficult now. We are working so hard to make things better, easier, more enjoyable to live.

But for now, we struggle.

Foo took the boys to a neighborhood girl’s birthday party last night while I was at work. Cool parents, sweet girls. But anytime Hamhock is awake, we have to be “on.” We have to know where he is, what he’s doing, and especially when he’s around other kids we have to be vigilant to make sure that he doesn’t hurt anyone too badly.

So, Foo was exhausted keeping him from destroying the house, from pulling the girls’ hair, from terrorizing the toddlers, and from sneaking contraband food. Foo was worn-out, as well as sad, that he couldn’t be like the other dads, just enjoying their evening, not running around after a 4 year old with autism, enjoying a relaxing moment in life. It also doesn’t help when they look at him running around, and he feels as if they’re all thinking: “why aren’t you just sitting down and enjoying yourself?” Or maybe worse: “I’m glad that’s not my life.”

I just want my child to have a full life. I want to share that life with him. I want happiness and enjoyment in that life. I hope that someday, someway, somehow it will be ours.

Right now, not so much.

Hamhock just figured out how to unlock the front door, and made a mad dash outside yesterday. You can call and call to him, and he doesn’t care – he’s off and running/biking down the street, so you have to throw on your shoes and RUN. I flipped the front door knob around so now I can lock the door with the key from the inside. The deadbolt still locks so nobody can get in from the outside.

There is constant whining and verbal tantrums, and Quiet Sittings help to calm him down, but mostly he has to do it when he’s ready or forgotten about whatever upset him. Basically, taking care of both boys is an exercise in enduring lots of whining and crying throughout the day.

Working to pay for ABA doesn’t help. . .Foo & I only see each other on Saturday and Sunday nights. Even then, I get off work at 8 pm on Saturday night, but do a 4 hour shift on Sunday morning at 5 am. So, I can’t really relax. Sunday night you have to start getting mentally ready for work again. During the week Foo works days, I work nights. We see each other only in passing.

I have to remind myself when I’m feeling down that there are amazingly adorable and sweet things that brighten our moods throughout the hard long days. Both boys are so physically cute, that it’s so fun to kiss their pudgy cheeks (both ends!), or tousle Hamhock’s locks of curls, or pat Superboy’s naked tush (often naked due to potty training), or tickle their underarms. My favorite thing about both boys is to get them to laugh. When they smile or laugh, all of my life has meaning and complete joy in that one precious moment in time.

Batman and Robin

They are hilarious with their love for super heroes. . . Superboy complete with his songs about Superman, Batman, Wonder Woman, the Flash, Green Lantern, Hawk Girl, Green Arrow, and John Jones. Hamhock’s face today lighting up as he played with his new Ironman mask and disc thrower, or Superboy’s focused attention on his new Superman figure fighting off Darkseid.

It’s so interesting how Hamhock has gravitated towards Batman, and Superboy towards Superman. I’m all too happy to be assigned the role of Wonder Woman, because I still think she’s as awesome as I did when I was 5. It’s so great that she is so beautiful and feminine, but is as tough as the big boys, and can completely hold her own.

To my two little superheroes: life may be challenging, but you make it all worth it!