August 2010


I am not a “hugger”.

I’ve never been one, either. I’m not sure why. I’m just not a fan. When someone comes up to give me a hug, I can feel my body stiffen. It doesn’t matter if it’s a close relative or an acquaintance, it’s just not something I’m comfortable with. I have learned to cope with it but it’s not my favorite way to greet someone.

I’ve understand now that I’m what is called a “sensory avoider”. I don’t like being touched or standing in a crowded room. Places like Costco and Wal-Mart make me want to run for the hills.  I may end up paying more for diapers, but it’s better than having a panic attack next to the giant packages of paper towels.

My son Howie, on the other hand, is a hugger. A huge hugger. I haven’t officially kept track, but there are days when it feels like he has asked for about a thousand hugs. And all from me.

See the tabloid headline now: “Sensory avoider gives birth to sensory seeking kid!”. I don’t remember learning about this possibility when studying genetics in high school. Considering my husband is also a sensory avoider, we must both be carriers of the sensory-seeking gene.

Howie’s been a sensory seeker since I can remember. It started mostly with sleep issues, with a constant need to be next to someone (me) while sleeping. He created a technique he called “tunneling” – meaning he would stick his hands into the side of my neck and ask me to press my head down into his hand. This is how he would fall asleep for about two years until we discovered that weighted blankets, body pillows and 2mg of melatonin did the trick, although I still have to lay next to him at night with my arms wrapped around him in a giant hug as he falls asleep. Sometimes when he has a hard time falling asleep or is uneasy in a situation, he still asks if he can “tunnel”. With me. And only me.

The hugs can interfere with our daily routine. I’m trying to change a diaper, and he needs a hug. I’m trying to make or eat breakfast/lunch/dinner and he needs a hug. There are days when he asks me for hugs for hours straight. I know others see it and think it’s cute. When we had the Children’s Hospital researchers here a few weeks ago, Howie was clearly uneasy about them being in our house. He asked me over and over again “Can I have a hug?”. He would say this as he was digging his legs into my lap and his hands into my neck. The researchers smiled and said “aw, that is adorable!”. It was all I could do not to scream.

How awful is that? My own kid’s hugs can make me want to scream.

But it’s because they are more than just hugs, as I tried to explain to the research team. It’s his cry for help.

I’ve learned to differentiate between different hug requests – ones for when he’s happy and proud, ones for when he’s bored, ones for when his body doesn’t feel right after something he ate, ones for when he’s tired, and ones for when he’s completely out of sorts. Those last ones are the most difficult, because they hurt the most physically and emotionally. When he’s unable to regulate his body, he squeezes me so hard that he actually chokes me. But I know he needs them to make himself feel better, and it takes every inch of my being sometimes to give him the hug back.

But I do. Because I’m his mom. And I know it could be so much worse.

Until he learns how to regulate himself, those hugs are all he has to make him feel right. We’ve tried to teach him ways to help himself – squishing under pillows, sitting in the bean bag chair, climbing in the body sock – and we’re working on giving him better words to use when he’s out of sorts so others can help him. We’re always showing him more appropriate ways to get the sensory input he so desperately craves. My husband will pick him up and squeeze him like an accordion (because if he calls it a hug Howie runs screaming away from him), and Gerry will have a gentle pillow fight with him. My hope is that someday “Can I have a hug?” won’t mean “I need help”.  Someday it will just mean “can I have a hug?.”

I can’t wait to write that headline.

U can’t touch this
Look in my eyes,man
U can’t touch this
Yo, let me bust the funky lyrics
U can’t touch this
” – You Can’t Touch This by MC Hammer

I’m not a big fan of what I call “obligation holidays”. I’m talking about days like Valentine’s Day, New Year’s Eve, and even my birthday. Holidays when you feel like you’re supposed to be doing something. Everyone asks what you’re doing on those days, and there’s the expectation that you need to do something great – a fabulous dinner, flowers, a midnight kiss. When it doesn’t happen, there’s a feeling of total failure. The end-of-the-day giant letdown.

Summer has always felt like one big long obligation holiday.

There’s the anticipation at the beginning of summer. Oh, we’re going to go on a trip, and go to the beach, and have cook-outs and family bike rides. This will be the year we finally take the boat out again, and…

(that last one is a tough one for me…the boat has been sitting in our garage for six years now. Tim and I used to talk about it every spring, thinking that maybe this will be the summer that we’ll rent a place on the lake for a week and spend the whole day out on the water like we used to do before…well, before everything. We don’t even mention it anymore. We both just stare at the boat in silence as we stack strollers and scooters and trash cans up against it.)

This summer I decided to break the cycle. I know our family better now. I know our limitations and have a better understanding of what we can and can’t do. I set zero expectations for this summer. And as I wrote back in June, I dug my heels in and started counting the days until September.

And now, Gerry starts school on Tuesday, and Howie the week after that. Gerry has a memory bag that his new teacher gave him on the last day of school, and he’s supposed to put special things in there from his summer adventures. I remember getting sad looking at it, knowing that I had nothing special planned, and just hoping we could find a thing or two so the bag wouldn’t be empty when he returned to school.

So here I sit now, the last Friday of August. I’m trying to figure out what we could put in that bag.

The truth is, quite a lot. Here’s what we did on our summer vacation:

-attended a wedding (my mom’s)
-went to Storyland
-went blueberry picking*
-went to the library
-played at the park (not once, not twice, but three times)*
-went bowling*
-went to the zoo*
-shopped at the mall
-went to the beach (just me, Gerry and Howie)
-took family walks
-taught Howie how to ride his bike
-played in the backyard
-went to the New England Aquarium
-saw a ballgame at Fenway Park (ok, this was just Tim and Gerry, but still cool)
-went to birthday parties (two of them – both Howie’s friends, first time ever)
-had playdates
-took all three boys swimming in friends’ pools (once even by myself!)
-survived camp/summer school/swim lessons (just barely)
-had a sleepover (Gerry’s first…more on this another time)
-bounced in a bounce house. All five of us together.

note: the (*) next to some of the activities on the list means I did them with the assistance of a mother’s helper. I hired the 15 year old daughter of Howie’s one-on-one aide to help me out two mornings a week on the days when Howie wasn’t at his summer school. The best decision I ever made and worth every penny. I’m pretty sure this summer would have been an even longer one had I not done that. I’m forever grateful for her help.

I’m exhausted just typing that list. Well, I’m exhausted with a smile on my face.

To the average family, that list might not seem so impressive. It’s probably what most families do during those 12 weeks of summer. But for us? Not so average. Getting us out of the house is sometimes accomplishment enough. Getting us anywhere is impressive.

Were there days when the minutes seemed like hours and the hours seemed like days? Absolutely. Were there days when I thought that all the progress we’d made with Howie this past year had disappeared in an instant? Definitely. Were there days when I sat at the computer, trying to hide my tears from the boys? More than I care to count. Were there tantrums, meltdowns, and screaming matches at some of those activities? Oh yes (just ask them at the zoo…)

But there were also mornings that started with laughter, when the coffee pot wasn’t the first thing I reached for. Afternoons filled with baseball, and swings and bike races. Nights when I fell asleep easily, knowing that we had made the most of the day.

That is our new version of summertime. The living isn’t easy, but it’s the best we can do. I know we’re not the rent-a-place-at-the-lake kind of family. At least not now.

Gerry has several things to put in his memory bag now, including one more to be made today with his dad at the water park. They’ve waited all summer for the perfect day to go. Can’t get more perfect than today.

Perfect song on the radio
Sing along ’cause it’s one we know
It’s a smile, it’s a kiss
It’s a sip of wine, it’s summertime
Sweet summertime”
– Summertime by Kenny Chesney

I’ve been thinking a lot lately about the show “The Golden Girls”.

Stay with me for a moment…

I was recently reading one of my favorite blogs written by my new friend Partly Sunny. I call her my friend even though I’ve never met her and have only “conversed” with her through our blogs and by e-mail. She has a perspective on all things autism that is different from mine, and recently she asked me if she was upsetting me with some of her comments. My response was of course not, that I respected her opinions and point of view, and I found her comments to be refreshing and important to hear.

All this started me thinking about my new community of parents with kids on the spectrum and parents of kids with sensory processing disorder (and in so many cases, these parents are one and the same). We listen to each others’ stories, comment on them, and then tell our own and get our own comments. I’ve been lucky enough to meet an amazing group of parents out there in cyberspace and in person. I enjoy hearing their stories and others do me the favor of listening to mine.

And for some reason, all of my new friends reminded me of the show “The Golden Girls”.

Still with me?

“The Golden Girls” was a show back in the mid to late 1980’s about four older women living in Miami. Each woman had a distinct personality and role on the show. I’ll out myself as a faithful watcher those Saturday nights through high school (now you know how exciting my life was back then). There was Dorothy, played by Bea Arthur, the voice of reason in the group and clearly the one in charge. Her mother, Sophia, was played by Estelle Getty, and was the wise-cracking sarcastic one, yet lovable in her own way. There was Blanche, the sassy southern belle man-chaser with a heart of gold played by Rue McClanahan. And my favorite, played by Betty White, was Rose. She was naive and took everything literally. She was the sweetheart of the group and the one they protected the most from the outside world.

So on Saturday nights for seven years (and for decades in syndication), these women entertained America. On the surface, they had very little in common and disagreed on a lot. Yet they had a formed a bond stronger than those disagreements, and at the end of every episode there was some sort of group hug.

That’s what this amazing community feels like to me.

I read a lot of blogs and websites and have the good fortune to have people reading mine, and have made many friends along the way. We have our voices of reason like Dorothy who guide us in the right direction. There are the wise-crackers like Sophia who are always there with a joke or comment to make us laugh. There are the sassy Blanches with the heart of gold. And of course, our sweet Roses who will always say the nicest things to make us feel better, even when the situation is dire and sad. We disagree on a lot – the causes of autism, what treatment methods to use, and whether or not we should look for a cure. In many ways we have almost nothing in common. To extrapolate on a saying “if you’ve met one parent of an autistic child, you’ve met ONE parent of an autistic child”. Yet remarkably we have one strong bond: the desire to be there for each other in whatever way we can. Because we “get it”. Because we’ve been there. And because we need people to be there for us.

Just like the end of every “Golden Girls” episode, each night before I go to bed I feel like I’m getting a big group hug from everyone out there. Every comment that I read, either on my blog or on others, reminds me that people care. Every text or e-mail I get from my friends shows me that I’m not alone. Each day my faith in humanity is restored by the Dorothys, Sophias, Blanches and Roses out there in cyberspace and in my daily life.

Thank you all for being my friends.

Thank you for being a friend
Traveled down the road and back again
Your heart is true your a pal and a confidant.

And if you through a party
Invited everyone you ever knew
You would see the biggest gift would be from me
And the card attached would say thank you for being a friend.
” – Thank you for Being a Friend by Andrew Gold (Golden Girls Version)

I am completely exhausted.  All in the name of science.

About three weeks ago, I received a letter in the mail from the Interactive Autism Network, asking if we’d participate in a research project through Children’s Hospital.  The study, sponsored by the Simons Foundation, is looking at families with just one child on the autism spectrum in attempt to understand if there’s a genetic or environmental link to autism.  All participants receive an autism evaluation for their child for free. My family fit the research criteria perfectly : only one child with an ASD diagnosis aged 4-17, one or more typically developing sibling older than 4, two biological parents willing to participate, and no other cases of ASD in the immediate or extended family (that we know of).

At first, I put the letter into the recycling bin.  I wasn’t all that interested in putting my family through some research project, and I was somewhat skeptical of the study as a whole.  But something kept bringing me back.  We fit the criteria perfectly.  What if by gathering data on our family, we were able to help scientists find a cause for autism?  What if we were able to help identify ways for earlier detection, and thereby earlier intervention?  I did a little research into the Simons Foundation and the project in general, talked to Tim about it, and decided to give them a call.

I asked all the appropriate questions, and got all the acceptable answers.  Yes, it was all anonymous.  The blood samples and questionnaires were all assigned an ID number so we could not be identified.  The information from the assessment would be ours alone and we could choose to share it with school and/or our doctor if we wanted to.  The blood draw would be handled by Children’s Hospital by a team comfortable working with kids on the spectrum (and 8 year olds who are terrified of needles).  They would even send us a practice kit and a social story for the blood draw.  The kids would be compensated for their participation, and the researchers would come out to the house for the interview portion of the study.   After getting the ok from Gerry about the blood work (five minutes of torture equaled a new Star Wars Lego set in his mind), we set up the appointment.

(speaking of Gerry, we included him fully in the discussion of whether or not to do the study.  His participation was important and we thought he was old enough to understand the purpose of the research and how he could be helping scientists discover the cause of autism.  He thought about it for a long time, as he is apt to do.  He came down on the side of helping kids like his brother.  Couldn’t have been more proud of his thought process.  The only exception is when I told him that the criteria involved having one kid who is on the spectrum and his other sibling not on the spectrum.  His response to me: “well, I know I’m not.  But we don’t know about Lewis yet.”  Ugh.  That was the kick in the gut that I didn’t need).

So today two researchers came out to the house and spent four hours with me and Howie.  One researcher administered the ADOS (Autism Diagnostic Observation Schedule) to Howie, and the other one went over the ADI (Autism Diagnostic Interview) with me.  Howie did great – he spent almost the whole four hours at the table with the woman with just a few short breaks.  On the other hand, I was a wreck.  The questions were incredibly comprehensive and detailed, asking me to recall a million small details of the last four years of our lives.    She asked about his speech, social interactions, and what developmental milestones were met or not met.  She asked for specific examples of speech patterns and moments of aggression.  She asked when we first noticed problems.  She asked four straight hours worth of questions.

I tried really hard to focus.  In so many ways, it was as if I was reliving those years all over again.  I could feel myself starting to fidget, and my body language was clearly showing my discomfort.  I know this because the whole interview was videotaped, and the little screen was turned around facing us at the table so my crossed legs and arms were staring right back at me.  It didn’t help that every question that I answered out loud for Howie I was answering in my head about Lewis.  A little bit of knowledge is a dangerous thing, and I was diagnosing Lewis along the way.

After finishing the ADI, we went through two more questionnaires – one about Howie and one about Gerry.  She gave me a few others to complete before our blood draw day at the hospital, including one social behavior questionnaire that I answer about me and one that I answer for Tim (and vice versa – that should be interesting).  They closed up their video cameras and went on their way around 2pm.  Thirty minutes later, Howie was out for a nap.  He was done.  And so was I.

I’m still having some mixed feelings about the whole thing, even after today.  We’ll finish up the study at the hospital in a few weeks and get the complete report from the assessments in about 6-8 weeks.  I’m not really sure what we’ll do with the information we get.  The scientist in me says that I should just file it away, that the point of participating is to help gather data with the hope of discovering a cause of autism spectrum disorder.  That’s pure science.

Then I remember there is no scientist in me.  Just a parent looking for some answers and some hope for the future for myself and my family. Just like so many other families.

She blinded me with science!”
And hit me with technology”
– She Blinded Me With Science by Thomas Dolby

I am honored to be writing over at Hopeful Parents today.  If you haven’t looked at the site before, check it out.  It’s a great place for parents with special needs kids to meet, chat and learn from each other.

I will be writing at Hopeful Parents once a month, adding my small voice to the many amazing voices sharing their stories.

Click below for the link to my post

The Wheels on the Bus

(my oldest has become quite interested in what I’ve been writing on my blog, and asked if he could write something sometime.  He was having trouble getting started, so we thought we’d begin with me interviewing him.  These are his responses – some he wrote down himself, some he told to me – but ALL his words.  The boy is wise beyond his yearsI hope he’ll be a frequent guest writer here.)

(and yes, I know he doesn’t have any sisters.  I just love this song from Free to Be You and Me and I thought it fit.)

Interview with a Big Brother

Tell me about yourself

I’m 8 years old going into 3rd grade.  My favorite school subject is reading, my favorite sport is baseball and my favorite video game is Lego Star Wars.

What’s the best thing about being a big brother?

The best thing is that your little brothers are looking up at you as a role model.

What’s the hardest thing?

The hardest thing is that my 4 year old brother can be a little annoying sometimes.

What’s your favorite thing to do with your 4 year old brother?

I like it when my room is clean enough and he can come in and play.

What’s one happy time together with him?

He likes to run and jump over a small couch, so most of the time I do it with him.

What was an unhappy or hard time?

When he is eating he chews with his mouth open which annoys me.

What does it mean to you that your brother is autistic?

It means that his brain developed differently than normal people.

What’s the hardest thing about having a younger brother with autism?

He can’t really control certain situations.  It’s  hard for me because if I’m sitting in the green chair and he wants to sit there, he pretty much gets his way, otherwise he goes off screaming or unhappy.

Is there anything you would change about your relationship?  What would you keep the same forever?

I wish he could control certain situations, so if he was making his silly noises, and someone asked him to stop, he would and ask where he could make those noises.

I would keep what he likes – his Hot Wheels cars and the food he likes – the same because I like them too.  I don’t really want to change his personality.

Imagine it is 20 years from now.  What do you see you and your brothers doing?

I would be 28, and my brothers would be 24 and 21 years old.  So we’d all probably have a car.  I think we’d be sitting on a couch – well, one of us sitting on a chair – watching baseball together.

Brothers and sisters, sisters and brothers
Each and every one
Sisters and brothers, brothers and sisters
Every mother’s daughter, every father’s son

Ain’t we lucky, everybody
Bein’ everybody’s brother
Ain’t we lucky, everybody
Lookin’ out for one another
” – Sisters and Brothers from the Free to Be You and Me soundtrack

I had a horrible horrible dream last night. The kind that wakes you up with a start in a cold sweat – the bolt upright in bed kind of dream that you see in the movies. The kind where you’re afraid to go back to sleep, because you fear the dream will start back up again where it left off.

I won’t go into the details, but it was in the genre of “every parent’s worst nightmare” kind of dream. I laid there in bed for a while wide awake, mostly because I was afraid to go back to sleep.

For as long as I can remember, I’ve always had anxiety dreams. My college roommate’s dreams were these grand “good versus evil” extravaganzas, where the players dressed in medieval garb and fought with swords and serpents. In my dreams, the players are familiar faces, acting out some twisted scene from my subconscious. I’m a firm believer that my dreams have some sort of message to me, something I’m supposed to do or understand. It was clear this particular dream was sending me this message:

It could be so much harder

Let me be clear, I am in no way minimizing how hard life is with a kid on the autism spectrum. I know that every day, and even every moment, is a struggle sometimes with our kids. I know that many of us live on the edge, waiting for that moment when our kids will say their own name or give us some recognition that they understand the world around them. I know the fear and worry that so many of us have about the future for our children, wondering if they’ll be able to grow up and survive in the world without us someday. But this dream reminded me of the alternative – the horror of making life and death choices about our kids and the unspeakable pain of outliving them. I know there are parents out there that suffer with this everyday – holding their own lives together while they care for their children who can’t walk, or eat, or breathe on their own.

So there in bed I laid with all these thoughts swirling around my head. I spend hours of my day in constant active autism mode. From the moment we wake up (and even during the night) I’m managing, planning, scheduling, observing, re-planning, and organizing our lives around Howie’s sensory needs. Activities are planned and timed with these needs in mind in order to minimize tantrums and outbursts. We avoid certain foods and smells so we don’t set him off. Our house is full of timers and schedules and body socks and social skills scripts so we can always bring him back to the moment when he’s overloaded.

While these are all things necessary to help him cope and understand his world, there are days when I feel like it’s all we do. When Howie’s running through the house, jumping over pillows with Lewis chasing him, in my head I say “he’s getting his energy out because his engine is running high”. When Howie asks to be pushed higher and higher on the swing, in my head I say “he’s getting the sensory input he needs”. When he’s sitting at a table with his friends having a snack and telling jokes, in my head I say “he’s developing good social speech skills”.

Why can’t I just look at these situations and in my head say “Look at my Howie. He’s having fun being a kid”? Is it because I know too much now? Have a become so mired in all-things-autism that I can’t look at a situation without identifying what IEP goal is being met at that time?

If my dream was showing me anything, it was that I need to be more appreciative of the moments that I have with him and all my boys. I need to stop always focusing on how Howie’s interactions with us all meet his sensory needs, and just let us…play. I need to laugh along with Howie and Lewis as they run and crash into the pillows with reckless abandon. I need to push Howie as high as I can on the swings because he wants me too, and because it’s fun. I need to sit down at the table with Howie and his friends and tell jokes that only make sense to four year olds, because that’s what four year olds do.

My dream showed me that the alternative is unimaginable to me.

I finally calmed myself down and fell back to sleep around 3am, about 30 minutes before Howie tried to climb into my bed as he has done on so many nights. Usually, I take him back to his bed and lay there with him until he falls back to sleep, and then I return to mine. This time, I pulled him into bed with us. Tim told me this morning that when he left for work at 5am, I was snuggled up tight against Howie with my arms around him.

Doesn’t surprise me. My dream told me to savor any and every minute I have with my kids, no matter how hard it is in that moment. Because it could always be unthinkably and unimaginably harder.

These dreams go on when I close my eyes.
Every second of the night, I live another life.
These dreams that sleep when it’s cold outside,
Every moment I’m awake, the further I’m away.
” – These Dreams by Heart

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