The Missing Piece (A Mom's Perspective on Traveling with a Child with Disabilities) by Rachel Nemhauser

I just returned from visiting my family on the other side of the country and I had a really great time. I lingered over steaming coffee (not as good as Seattle's, but good enough) and the best bagels Long Island has to offer.  I caught up on family news and stories, successes and setbacks, highs and lows.  I held my baby nephew for a long, cuddly time, getting my fill of his weight in my arms and his gorgeous grey eyes. I ate at my favorite restaurants, took long, winding car rides, and laughed a whole lot. Like real, hearty, belly-ache laughing. I flew home at the end of the 3 days feeling refreshed and reconnected, happily a part of a large and loving extended family.

Wait a minute - something's not right. My annual visits aren't usually like this. Usually I experience rushed meals, snippets of conversations, cold coffee and full body exhaustion.  Hmmm. Weird. Why would this visit be different then the others? Why did this visit leave me energized and not drained, connected and not frustrated? What a puzzle...

Wait, I got it!  A certain red-headed, slightly mischievous nine-year-old wasn't there.  Nate was home with his dad and brother, and I was visiting on my own.

There is nothing earth shattering about the assertion that traveling with kids is difficult, and traveling without kids is easier and more relaxing in comparison.  However, when you add a child with disabilities into the traveling mix, the difference is almost incalculable.  For us, visiting our family means security lines, a 6 hour plane trip, long car rides, spending a lot of time in homes that aren't Nate-proofed, lingering meals at quiet restaurants, and well-meaning family members who don't always understand.

Taking Nate to visit family is more than just extra work.  It's seeing him and his deficits through the eyes of people who don't spend very much time with him.  It's explaining why he does what he does, and why we respond like we do.  It's making sure Nate's brother gets the attention he deserves from his extended family, even when Nate seems to demand every ounce of everyone's attention all day long.  It means skipping certain outings that just won't work for our family, or leaving early from others.  It means seeing younger cousins' development skyrocket past Nate's, more notable because of the long separations.  At moments it can be gut-wrenching, to tell you the truth.

I was reminded this week that every once in a while I really need a trip by myself so I can connect and relax and have fun with my long-distance loved ones.  Most of the time, though, when I climb aboard a plane and head east, I'll have my mischievous red-head by my side. He's a part of my extended family, chaos and all. He's loved, he's missed, and he's needed. He's part of what makes our family who we are, and without him there is a piece of joy missing.

Happy holidays and happy New Year!  Enjoy your time with your family, wherever they are!

I Don't Know How You Do It by Rachel Nemhauser

Let me set the scene: I'm at the grocery store with Nate, waiting in line to check out.  While we wait, Nate's ever-busy little hands grab a candy bar off the shelf.  I take it out of his hand and put it back. He screams in his shrieky way that makes everyone stop and look.  I try to hush him and he grabs a magazine and throws it on the floor.  I ask him to pick it up and he screams again. I unload the groceries onto the conveyor belt and he puts them back into the cart before they're scanned. Basically, he's turning grocery shopping into an endurance sport that is testing every limit of my patience and good humor.

By the time we're at the front of the line I'm sweaty and frustrated, and that is when the woman behind me in line chimes in with "I don't know how you do it!"  Not this again.

I get "I don't know how you do it" a lot, accompanied by a sympathetic smile or a pat on the back. Sometimes there's a hug, sometimes followed by a "Wow! You have so much patience". Sometimes by a stranger and sometimes by a loved one.

I hate when people say that to me.

Perhaps it's because "doing it" was never a choice I was given. No one asked me, before I conceived Nate, whether I'd be interested in making grocery shopping infinitely more agonizing and embarrassing for the next 20 years. No one asked me if I'd like dinners to be tornado-like, or getting my child dressed to be a full-contact sport. Sometimes I'm not sure how I do it either, but groceries need to be purchased, kids need to go to school in clothes, and we all have to eat.  I do it because it has to be done.

Maybe "I don't know how you do it" gets to me because it reminds me that what I'm doing is harder than it is for some other parents. While most people don't like to take their 9 year old grocery shopping, I know that most parents aren't dealing with what I'm dealing with when we shop. However, if I walked around all day dwelling on that I'd be a pretty miserable person.  "I don't know how you do it" takes me out of "denial" mode and into "reality" mode, and I don't always feel up for that!

But here is why it really gets to me. "I don't know how you do it" implies that what I have is worse than what you have, and that is absolutely NOT how I view my child.  Tougher? Yep. More frustrating? Probably. More labor intensive?  Absolutely.  Worse? Not by a long shot.

Because at the end of the day, I get to have Nate and no one else does.  I get to hear him laugh, and watch him learn, and brush his glowing orange hair.  I get to snuggle with him and smell his neck and take him trick-or-treating. I get to watch him squeal with delight as leaves swirl down from trees, or when our cat licks his face.

Difficult behavior is an unfortunate down-side of an awesome kid. If you find yourself not knowing how I do it you just might not know Nate well enough.  I promise you that if you knew him better, you would know exactly how I do it.

Happy Birthday Bubba by Devra Hunt

Today is little Bubba's 11th Birthday. What a crazy ride you've taken us on. Lots of twists and turns. Some turns are easy, some twists are more difficult than others. But life with you is always an adventure and certainly never boring. I am so proud of how hard you work to be who you are. Your courage, determination and curiosity have brought you this far. I am eager to see how much further you can go. Love you Bubba. Happiest of Birthdays to you.

The Trumpet (A mom's perspective on inclusion) by Cori Ponte

Inclusion. What does that mean? Well, let’s briefly talk about it. Inclusion is a model of education in which students with special educational needs spend a large portion of their day learning in the general education classroom with “typical” peers. For Mason, he has additional para-educator support (an aide) in gen ed and also goes to the Resource Room for smaller group instruction. The idea of inclusion is also supposed to carry over to specialists (art, music, library, P.E., etc). Sometimes it works. Sometimes it doesn’t. Some teachers are fabulous in going the extra mile, while others don’t really want to work with “those kids”. Regardless, whether inclusion, gen ed, or a more contained classroom – it varies upon each student’s needs. In an ideal world, there would be enough funding and staff to support all students in an inclusion model – but that’s just not reality.

Enough about that - let's talk 5th grade – YES, Mason is a 5th grader! Now, let’s narrow the scale to music for a 5th grader (did you catch my pun...scale - music? hee hee). Music in 5th grade doesn’t mean singing the songs and doing “choir” performances during the year. Music in 5th grade means INSTRUMENTS. You heard me. INSTRUMENTS. Week one of school and Mason brought home the “warning” letter about band and orchestra. Knowing this was coming, I sent a preemptive email to the music teacher asking what he thought might be the best fit for Mason. I’m thinking bell, a drum, wood block, etc. The easier (for mom that is), the better.

On Friday the class had music and saw/heard a demonstration from a variety of instruments. When I picked Mason up after school, he was bubbling over with excitement and information about the cello, trombone, viola, violin, tuba, flute, etc. He spewed information about each instrument. As we were leaving, I spotted the music teacher and quickly raced over. “So, what do you think would be a good fit for Mason this year”? His response? “Whatever instrument he is interested in playing”. Um, wrong answer! Let’s think easy, quiet, low risk of frustration, etc. Let’s not do the whole “whatever” thing. But, no, the music teacher pulled the whole “whatever he’d like to play” card. AAAHHH. The music teacher went on to say that he wants the students to pick their top 3 choices of ANY instrument and then he makes the final decision. His rationale was two-fold. First, he wants the students to WANT to use the instrument and therefore practice at home. Second, he can adapt/modify anything so the student (Mason) has success. Um – excuse me? I understand this is a great inclusion model, and all, but seriously? The thought of a tuba in the house makes me shudder. Not to mention a stringed instrument which I have no idea what to do with (I played the flute and piano). Hmmm, now the burden is on me to help “guide” Mason’s choice so that I will survive the year.

So, Mason and I went home and looked up all the instruments again on-line. There was NO guiding him – his mind was made up. He decided his three choices were:

1.      Trumpet

2.      Violin or Cello

3.      Percussion

Yesterday “the letter” came home. He was assigned THE TRUMPET. He was ecstatic! I had other thoughts. So,today after school, we procured said trumpet from the music teacher (thankfully – if you are all aware of my current situation, you’ll understand – the school had one we could borrow vs. rent). The band teacher showed Mason how to put the mouthpiece on and how to blow. Guess what? He made a sound! So, as one would expect, he’s been serenading Lauren and I most of the afternoon. He LOVES it. I think he loves it more because he can make more farting noises – but he is actually making “trumpet noise” too.

While I joke about this situation in relation to inclusion –this IS what inclusion is supposed to be. The band teacher was fabulous and didn’t even miss a beat. He explained that if Mason picked a stringed instrument then maybe he could “pluck” vs. using a bow. If Mason picked a woodwind/brass, then they’d just figure it out so he could participate with his peers. This is what a parent of a child with special needs earns for – and I’m just thrilled that Mason has a band teacher who embraces him, considers his needs, considers his abilities, and considers how to include him (yes…trumpet and all)! Three cheers for a wonderful start to 5th grade and a great band teacher! Now, where did I put those ear plugs?

Counting Down to Day One (A mom's perspective on the first day of school)

First day of school.  New backpacks, fresh haircuts and high expectations. Jangled nerves, empty houses, lunch boxes and pointy new crayons. New teachers, new kids, new rules, new routines.

The first day of school is in 61 hours.

I've been counting down to September 3rd since late spring, and I. Can't. Wait.  My kids need to be in school.  They crave the routine, the structure, the socializing and the stimulation. Our family harmony thrives on the controlled chaos of soccer practice, speech therapy, dinner time, and homework. The 9 months of the school year are comforting in their repetitiveness and predictability.

Perhaps even more than my kids, I need them to be in school. I crave a cleaner house, running errands alone, and an occasional solitary walk with my dog and my headphones. I yearn for the moment when the bus pulls away from the curb and I'm left to walk, alone, into a silent and empty house. I want it so much I can almost taste it.

But with a new school year comes new reminders.  Nate is nowhere near the maturity and skill level of his typically-developing fellow third graders. Nate has not spent the summer going to birthday parties and play dates with his peers. Nate won't quickly adapt to new classroom routines and expectations, he still can't read and his math skills are at a preschool level.

The first day of school brings new teachers, students and parents who have never met Nate before. Cue the sideways glances, quizzical looks and confused stares. A new group of families trying to understand who Nate is and why he's acting so....different. A new batch of paranoid thoughts flying through my head, wondering whether the teacher, the other kids, and their parents are wishing Nate wasn't there.

The new year brings what feels like a million new logistics and details to iron out.  Who will take Nate to the bathroom? Will they know to take him even when he says he doesn't need to go? Will they make sure he gets his pants pulled down in time?  And what about lunch?  Does his aid know he has a peanut allergy? Will they know he needs to be reminded repeatedly to focus on his eating? What time will he get his afternoon dose of medication, and will it be at a convenient time that doesn't interfere with his class time?  Who do I talk to about making sure Nate gets to attend Art class this year, instead of missing it for Speech therapy?

And then there's the guilt.  I should make him write his name 10 times a day to improve his handwriting. I'm not consistently reinforcing school skills and expectations at home.  I'm not spending time each day working on his reading.  I should be posting daily schedules around the house, encouraging his use of the iPad at home to communicate, and making play dates with a classmate every few weeks. September through June is a annual, prolonged period of knowing I should do more but not having the time, energy or organizational system to make it happen.

Something else happens when school starts every year.  I'm reminded how many people work hard to ensure Nate's well being, safety, security and happiness. I'm reminded of all the people in our community who love him and want him to succeed.  Like the weight of a thousand hugs, I feel the support of teachers, therapists, counselors, administrators, parents and kids who care about Nate and our family.  When school is in session I get the chance to see the kindness of a classmate holding Nate's hand and walking with him to recess. To see a teacher take extra time to include Nate in a lesson.  To see an aid offering him a hug when he's sad.

And so we begin another school year of joyful highs and heartbreaking lows, early morning wake-ups and late night homework battles. New shoes, a shiny lunch box, many successes and some failures. Being Nate's mom means more questions, more worry and more time spent making sure it all works. Only 60.5 hours left.  Bring it on 3rd Grade!  Nate and his mom are coming for you!

Some Days are Diamonds by Linda J. Porter

Thanks for asking about my dog.  She perked up over the past couple of days but this morning she could not get up without assistance.  I thought maybe she had just been ill rather than dying, but now I’m not sure.  I just try to make her more comfortable, do some contingency planning around her potential demise, and focus on enjoying every moment that I can share with her.  I secretly hope that if she were to die, let it be after ShayLynn, 16, returns from camp on Saturday so she can gain some closure. 

ShayLynn was three years old, about six months after her adoption, when a litter of puppies was featured on the local morning news one rainy day in December.  The puppies had been left in a bag in a rural area in King County called Black Diamond.  Remarkably, a group of teen boys came by, rescued them, and brought them to the local animal shelter.  I felt compelled to drive to the shelter that morning, not really believing we would get one of those puppies but since I had been planning to adopt a dog, I hoped it would be one of these. 

You see, ShayLynn had been asking in previous months about her biological parents; e.g., why they were not there for her and why they left her.  In preparation for her July adoption, I had been explaining that “adoption” means having a “forever family”.  She knew she had lived with me since she was two months old, and now adoption would mean she could forever remain legally a part of my world.  This comforted her but she was also a bit confused.

When the boys found the puppy littler, I thought it would be a great parallel for ShayLynn to reach out and adopt a puppy within a few months of me adopting her, and that she might then better understand on some core level that she had an opportunity to ease another creature’s life.  Even though Diamond’s mommy was not there, because of the kindness of young men—who could have made other decisions about their fate—these puppies had a solid chance.  And so it came to be that one little black Labrador/border collie mix who had a large white diamond on her chest, who was found in Black Diamond, and now named Diamond—had that chance of being loved by a little girl who now somehow understood.

But the story does not stop there.  When I brought ShayLynn’s little brother into our home six years later after his mommy could no longer take care of him, he required an extraordinary amount of supervision—more than even most waddlers and toddlers—as he continues to need to this day at the age of 11 years.  Besides suffering from PTSD due to his traumatic early childhood history, Nathan has a sensory processing disorder where he is highly sensitive to sensations, but he also seeks it out to distraction.  He has this incredible “bionic” ability to hear, see, and feel sensations more than most people can.  (Case in point, he spoke just last week about how amazing it was to actually hear the sound of little birds flapping their wings some distance away.  I am highly attuned to sensations as well, but I could not hear it.) 

There are many times when Nathan becomes so overwhelmed by all of these sensory intrusions in his life, that it can lead to behavior problems.  Not to be crass, but it was sometimes hard to even get into the bathroom because he had to be right near me at all times.  Sometimes I felt I could hardly breathe.  I also had to be highly aware of whether or not he would somehow harm the dog, as is so typical of little tykes whose greatest delight is in toys that make noises at the push of a button.  Pulling a dog’s ears can result in a squeal or even worse, a snap of the jaw.  This would be exciting for Nathan with his sensory-seeking needs.

So, I knew if I went into the bathroom, I would have to keep the door at least partly open, then use my “mother’s other eyes” (my ears) especially since the dog bed was located in my oversized hallway outside of the bathroom door.  One day, the door ajar and separating us—it got eerily quiet.  I spoke to Nathan (who was about two), asking him what he was doing.  No answer.  I spoke more and no answer.  This could not possibly be good.  I had kiddie gates on the doors leading from the hallway, but had not heard any open.  What was going on? 

I rushed to open the door and there I saw what has become one of my greatest memories:  My little boy, the epitome of relaxation, was lying in a fetal position in the dog’s bed next to the dog.  Every inch of his hair was saturated and swept into all sorts of comical swirls and curls.  And there was our family dog, licking my normally busy boy with a most loving expression on her face.  It was impossible to be disturbed by what would typically be a rather disgusting scene.  A bath could come later.  Right now, Nathan enjoyed it so much that this was the one thing that he remained still for.  Why impede that?!

And thus began the bond that he and his “mother dog” share to this day.  In a special way, Diamond transcended what I had been trying to accomplish in the months since Nathan had arrived in my home—helping him learn how trust enough to be nurtured and to accept love.  Nathan is sad about the prospect of losing his beloved Diamond.  When he thinks about it, huge tears form in his eyes and the occasional tear trickles down his face.  He said he misses her already.  For now, he leans into me for comfort and empathy, a huge step for him.  Someday, though, he will understand even more, the importance of her journey in his healing.”

Afterthought, 8/28/13:  I continued to observe Diamond until Saturday, 8.24.13, the date my daughter would return after two weeks of overnight camp.  Since Saturday, it is as though our beloved dog is different!  She is up and around, moving easily, doing her “sassy bark” when she is not in the same room with us at night (her long-term, unpredictable incontinence means she must be on a washable floor), and is eating and drinking more.  She wags her tail and initiates play.  Could it be she was grieving the loss of her “sister”, my daughter?  Hmmm….  We are guardedly joyous that this means she will remain with us for longer still.  

Charades, Anyone? (A Mom's Perspective on Assitive Technology)

Nate has a lot to say, and has opinions on everything that goes on around him.

Everything.

He has things he wants to do, specific ways he wants to do things, and an argument for every rule and decision I make. He has a favorite show he insists on watching, he has several excuses as to why he can't eat when it's dinner time, and he tattles on his brother regularly. In all of these ways he is like every other 9 year old I know.

However, Nate is not like every other 9 year old I know.  Nate is extremely limited verbally, and most of his complicated ideas, beliefs, thoughts and decisions are trapped inside his head.  He knows the words he wants to say, but he can't make his mouth move in the right way in order to say them clearly. His words come out without most consonants, and often don't sound like words you would recognize.

This is not to say he doesn't try to express himself.  Nate is extremely effective (I might even say gifted) at communicating what's on his mind. He uses a combination of his very simple (but always growing) vocabulary, a few signs, pointing, grunting and acting.  In short, life with Nate is like a very long, unending game of Charades, where the people around him attempt to guess what he is trying to communicate, and Nate patiently continues to convey his ideas until we finally figure it out.  The people who spend the most time with Nate can more easily interpret what he's communicating (the Charade "winners", if you will) and people who don't know him well usually struggle to understand him.  As long as Nate is always around someone who knows him well, he'll most likely get his needs met, his questions answered, and his thoughts heard. 

The problem is that Nate is not always around someone who knows him well.  We work hard to keep Nate's world wide and to involve him in the community around him.  That means he is periodically meeting new people and independently facing a world that can't understand him.  I can only begin to imagine how frustrating, scary and annoying that feels to Nate.  Additionally, Nate's brain is developing and he's progressing intellectually.  He wants to share more complicated ideas and questions and opinions, and his Charades strategy can't keep up. 

Part of my job as his mom is to prepare him for a time when he will be navigating the world as an adult, without his support system around him.  While I know that Nate will likely always need extra help, it's incredibly importance that he learns to communicate effectively with the outside world.  That is where assistive technology comes in. 

Since Nate was 5, he has spent a portion of his assigned Speech Therapy hours at school learning how to communicate on an iPad.  He's spent several years learning how to operate the equipment, how to find the words and pictures he's looking for, how to string 2-3 words together, and how to be ok putting the iPad down when speech therapy is over.  By the end of 2nd grade, Nate was using his iPad to give an oral presentation on Stephen Hawking, and to give weekly updates to his class on how he spent his weekends. It's not a fast process, and I still think Nate can express himself more efficiently with Charades than with the iPad, but it has opened up a world of possibilities.   

I have a dream that one day grown-up Nate, alone with his iPad, will walk into a Starbucks and order a very complicated coffee drink without needing help from another adult.  And that he will use his iPad to tell me the really funny thing that happened at work that day.  And to tell me that his tooth hurts and maybe we should see a dentist. 

I'm not giving up on Nate's language and vocabulary improving, and we still work in speech therapy every week to improve his talking.  However, for Nate assistive technology is a very strong and reliable backup plan.  It's also the ticket he needs for independence, safety, productivity, friendship and life in general.  It's a lifeline for him, and a cause for increased confidence and security for me.  Nate has so much going on in that little red head of his, and I look forward to years of him telling me all about it! 

DDD Induced Rage: A Mom's Perspective on Working with the Division of Developmental Disabilities

"Division of Developmental Disabilities, can I help you?"

"Yes, thank you.  My son is 4 years old and is DD Eligible.  His behavior is non-stop out of control and our family is cracking under the pressure.  We are not low-income but we need help and we need a break.  What we really need in respite care."

"Unfortunately there is a wait list. I will add your son's name, and we'll contact you in 8-9 years."

"8-9 years?!  But he'll almost be an adult by then!"

"Well that's great, because we have so many more services available for adults!"

Yes, that was an actual, real phone conversation I engaged in back in 2008. After finally getting to a point where I was desperate enough to reach out and ask for help, I was notified that no help was available.  And yes, the DD Case Manager who told me no help was available said it with such a chipper, upbeat tone that it still makes me want reach through the phone and slap her.  If I could have I would have.

My first interaction with DDD was undeniably a negative one, and definitely discouraging.  Much like a child learning the hard lesson that no one can take the tough math test for you, I faced the reality that our family was really on our own.  There was no government help out there for us, and if we were going to make it through Nate's childhood, we were going to do it without the help of the State.

And I'm proud to say that we are making it through.  When my first call to DDD didn't work, I didn't stop there.  I connected with doctors, friends, clergy, Nate's school and our extended family.  I used the resources around me to get the respite care and behavior management help we so sorely needed.  I found babysitters who could handle Nate but didn't charge an arm and a leg so that my husband and I can have some time together.  I found volunteers at my Temple to spend a few afternoons with Nate so I could attend, and actually watch, a few of Isaac's little-league games.

The lesson here is not that DDD is awful, or that they don't offer incredibly helpful and life-saving services and support.  I understand that the combination of my financial resources and a bad phone rep who answered my first call was what resulted in my not getting the help I needed at the time.

To me, the lesson I learned is that DDD is one stop when help is desperately needed, but not the only stop.  Once I recovered from my desire to get violent through the phone lines, I was able to look at the people around me and realize that help was available. Nate and our family have an entire community of people available to us when we need it, and we couldn't be more grateful. Having my eyes opened to the natural supports around me was, and continues to be, a true gift.

So I end with a parting message to the DDD rep who answered my phone call in 2008: You surely didn't mean to give me a gift but I learned a valuable lesson, and found some incredible help.  Also, your chipper tone was rage-inducing and in the future when you're delivering bad news you should use a tone that reflects the news you're delivering. Thank you.

IEP/Working With The School System (A Dad's Perspective)

Most people who know Nate are aware that he has challenges with speaking. Fewer people know he struggles with motor control as well. He has had tremors, shaking, when attempting to do fine motor activities like use a fork or spoon or controlling a pencil or pen. His occupational therapists have attempted to introduce tools into his life to help him control these intention tremors. Things like weighted utensils and weighted sleeves can help give him more physical feedback. We have celebrated small signs of progress like holding a fork with the proper grip, and more recently, feeding himself cereal with only moderate liquid mayhem left in his wake. Two weeks ago, Rachel brought Nate to the local Boys and Girls Club to watch his brother's basketball game. Nate wandered off to play with some Legos. Rachel walked over to check on him a while later and saw him drawing on a piece of paper. He loves to draw, so there was no surprise there. More accurately, he loves to scribble. What Rachel saw when she peered over his shoulder was something she never expected to see...maybe in his entire life. There was Nate's name, written in his own handwriting, plane as the bright red hair on his head. Miracle. It was the type of moment where parents who have worked hard to temper expectations for their son's future could dream a little. If he can write his name by age 8, what will he be able to do when his 12 or 18? These are the questions we tackle when working with the school district on Nate's Individualized Education Plan (IEP). It is that process, and the team of people that have spent countless hours with Nate, that made the impossible, possible.

I am lucky to have a wife who has dedicated time to learning about the system and understands better than most what it means to be an advocate for your child. She knows every therapist and teacher working with Nate, and knows every goal that has been set. Mundane tasks like buckling a seat-belt, or brushing teeth appear on the list. Striking the balance between fundamental life skills and true academic education can be difficult. All of it aligns to the goal of enabling a more independent adult life for Nate.

Some of the more difficult moments are when our goals do not align completely with the school district. Taking care of special needs children is expensive and challenging. While we know the people want what is best for Nate, we also know they face tight budgets and a dearth of qualified, affordable candidates to hire. The human in me empathizes with them. The parent in me has to largely ignore it and focus on what is best for my son.

Nate originally started out his schooling in the special education class, at a school that housed the program. He took the bus there. The teachers were great. It also was not the right place for Nate. Rachel had been learning about inclusion, and one of the things that became clear to her was that Nate was never going to learn the necessary behaviors from his peers in this class or be challenged to reach his potential in the same way as if he was surrounded by typically developing students. I was skeptical of her conclusions early on. The idea of putting Nate, with all his odd outbursts, and his unrequited hugs, in a school of typical kids with parents that didn't know him was scary. I know how cruel kids can be to a kid that has a different backpack, let alone one that behaves like Nate.

Rachel convinced me over time, and then we worked together to convince the school district. He was attending Sunday school every week for hours with an untrained teenager watching him. Was it such a stretch to think a trained adult aid could help him through a school day? The idea was met with plenty of skepticism and reluctance. Some of it was due to real questions about whether it was the right thing for Nate, and a lot was due to the expense and logistics required to pull it off. We worked through it.

Nate has attended his neighborhood school for the last three years. The kids treat him well. The teachers have been terrific, and the parents have been understanding. We no longer spend time in the IEP meetings debating whether he belongs there. We focus on what we can do next to help him reach his undefined potential. He is a gift that is being unwrapped over years. Nobody other than Nate really knows what is inside. He can write his name now. I cannot wait to see what he does next.

The Immutable Bonds Of Brotherhood (A Dad's Perspective on Sibling Issues)

I always wanted two kids. I grew up in a two kid family. It provided the chance to have a boy and a girl, if genetics and luck allowed it. It was just part of my life plan. That is, until I had my first child with Rachel. One child seemed like a fine number after surviving a colicky newborn. Rachel was not convinced. Her life plan included a sibling for our son, who so clearly relished every opportunity to play with other kids. She wanted a playmate for him when he was young. She wanted a him to live in a household where the world did not revolve around only his needs as he grew up. She wanted him to have someone to share the burden of taking care of us when we got older. It was a compelling case that took about three years to make. The plan was set. But, as they say, the best laid plans often go astray.

We welcomed Nate into our family, and watched with satisfaction as Isaac took so naturally to the role of big brother. He had an extraordinary ability to keep calm as Nate shrieked and bellowed in the back seat with him on car rides. He was gentle and kind. In that first year, before we were certain of Nate's special needs, much of what we hoped for was happening. Isaac needed to adjust to a world where his brother's schedule was factored into the family calendar. He got to see someone else be doted on and given gifts. Typical stuff for new siblings, and things Isaac handled relatively well.

Rachel and I knew Nate had special needs far before Isaac ever did, and it weighed heavily on Rachel. Not only was Isaac going to miss out on having the playmate we wanted for him, but now he was going to have to take care of his brother as he got older. He would likely never have the confidant she envisioned. I worried that Isaac would eventually be embarrassed by his brother's odd behavior and feel the need to make fun of him when with friends or at school.

Isaac never had an inkling of our master plan for him, and we certainly did not share our growing concerns about Nate. For him, Nate was his brother. A brother that was capable of certain things, and incapable of others. He was a brother that liked to wrestle, watch cartoons and often made all of us laugh. Nate was also a brother that might break his things, scream at him for no apparent reason, and annoy him and his friends when they were trying to play Xbox. He was his little brother.

Nate knew nothing of our plan or his limitations either. He saw a boy who wanted to play with him and hug him. He saw a boy who he desperately wanted to impress or make laugh. He saw a boy who brought other boys to the house that laughed when Nate did something funny. Nate wanted to do what Isaac could do. He wanted to be like his big brother.

Siblings have no ability to choose one another. They just are. We have all seen brothers and sisters that are fit together like hand in glove, and we have seen brothers and sisters that cannot occupy the same space without touching a nerve. These phenomenons are curiously caused by the same thing: shared genes and shared experiences. Siblings know each other in a way nobody else does.

The language barrier has made it difficult to assess Nate's feelings for Isaac. He often has trouble understanding what is going on around him, and lashes out at Isaac in frustration. He will accuse his brother of being, "Not nye!" (punctuated by a pointer finger disapprovingly wagged in his face) for transgressions ranging from Isaac offering to help him with a problem on an iPod game to events that have nothing to do with Isaac like Mom or Dad asking Nate to come to the dinner table. Isaac takes his fair share of abuse from Nate.

Mike Isaac, enjoying an afternoon nap in the Sun

I see how hard it can be for Isaac to give and not receive with Nate. There are many moments of fun and happiness, but not a lot of clarity. One such moment came recently when we welcomed a new member to our family. Nate's class at Sunday school was asked to bring a doll in for a baby naming. Nate eagerly brought his baby doll to class, and emerged eager to share the baby's naming certificate. On it, the name read, "Mike Isaac." Or, in Nate speak, "my Isaac."

Nate can't say much. But the words he chooses speak volumes. It does not matter that he has trouble talking with his brother. Plenty of siblings have trouble communicating. What transcends language is action and intent.

Nate trusts Isaac. He loves Isaac, and Isaac loves Nate. They make each other better people, and us, better parents. Their relationship will continue to grow and change. They will be drawn together and pushed apart, but they will always be brothers.

I've Got the Family-Dinner Blues (A Mom's Perspective on Sibling Issues)

It's 5:56 pm.  The kids are hungry, and I am sweating.  I'm running around like crazy, making dinner, setting the table, feeding the pets, keeping the kids from getting into trouble, and pouring the correct type of milk into each child's preferred cup and pairing it with each child's preferred type of straw. Exhausting.

By 6:04 Dad has walked in the door from work, the oven-timer has beeped, and it is finally time to sit down for dinner.  This should be the moment where my hard work, large effort and flop sweat pay off.  This should be the moment that I look around the dining room table at the family I love and rejoice in sharing a meal as we go over the highs and lows of our day.  

Should be.

In my house, this is the moment where things usually go down-hill.  It starts with trying to get Nate to the table.  He doesn't want to come.  He wants to continue doing whatever it was he was doing the minute before I said "Dinner's ready!" It continues it's downward spiral with Nate's insistence that he's too sick to eat, that the food is "yuck", and that he's "all done" (his language is limited, but not his ability to make excuses not to eat).  Once forced into his chair, Nate climbs in and out no less than a hundred times, drops his fork, feeds a few bites to the dog who is smart enough to always station himself by Nate's feet, spills his milk, occasionally throws food at my head, and insists he has to go to the bathroom.  

It is usually at about this time when Nate's older brother interrupts the festivities to ask "May I be excused?", and just like that the family dinner is over.  

Oh, did I not mention that Nate has an older brother (Isaac, 12) who is subjected to these nightly family dinners?  Did I forget to say that while Hurricane Nate is taking place to my left, my other son is scarfing down his dinner in the chair to my right?   I'm not surprised I forgot.  I occasionally notice that my entire body is pointing towards Nate while we sit at the table as I attempt to anticipate the next catastrophe.  I have to intentionally remind myself to turn my body around and direct my eyes at Isaac. My mom-guilt meter is through the roof because with all the chaos of "dinner with Nate", it is sometimes hard to remember that Isaac is sitting there, also wanting/needing/deserving my attention. 

I'm not proud of this.  As I write it, my heart breaks a little bit.  Isaac deserves peaceful family time and his mother's full attention during dinner.  He deserves the opportunity to share the ups and downs of his day, and to take part in a genuine, age-appropriate conversation.  But Isaac is the sibling of a child with a disability, and so his needs sometimes get overlooked.  

Isaac's life with Nate is not all bad, and I would even go so far as to say that it's mostly good.  My boys love each other in a way that makes my heart sing.  They snuggle, they treat each other with kindness, they laugh hysterically together, and gang up against their parents in the way that brothers have been doing for ages. Isaac has learned such patience, acceptance, open-mindedness and generosity because he has Nate for a brother.  He has learned to be comfortable around a wider variety of people. He believes in inclusion. He knows to define people by their personhood, and not by their disability. He makes me proud every day, and I know his experiences as Nate's brother will help to shape him into a man of integrity and goodness.

Knowing Isaac will be better because of it doesn't erase the frustration and sadness I feel about our challenging family dinners. Similarly, suffering through impossible meals does not erase my understanding that a family dinner is important for both my boys for a thousand different reasons.  Therefore, I will keep making dinner, sweating and rushed though I may be, so that our family can sit together each evening.  I can guarantee you it won't be quiet, peaceful or involve in-depth conversation, but it will involve the people I love most in the world so how bad can it be?

We'd love to hear what family dinner is like in your home. Please share your stories of siblings, dining and family together-time!  Thank you!

The Rule of Yes (A Dad's Perspective On Marriage )

My wife and I married when we were young, especially by today's standards. We met in college--the first day as it so happened--and were exchanging vows by the time we turned twenty-four. Rachel was pregnant with our first child by the time she was 25, and we shed any remaining childhood innocence by the time we turned 26 as we grappled with the reality of what it meant to be parents. I'll never forget my mom wondering aloud how I would handle the effect a baby would have on my well-worn routine. She was right to wonder. I lived life the way I wanted to live it, when I wanted to live it. That meant watching nearly every Mariners, Seahawks and Trail Blazers game. It meant going to sleep when I felt like it, and getting 8-9 hours of rest every night. There was enough space in our pre-child lives to accommodate such splendid rigidity. These were, after all, the quirks that defined us.

Sleepless nights, a crying baby, dirty diapers, and a social life that only The Unabomber could appreciate challenged us as individuals and as a couple. Life, for me, had been like a lake, with experiences accumulating over time without much change in location or make-up. Now it was much more like a river. Life was rushing at me, and it was never clear where the next turn was coming from or if rapids were ahead. Navigating those waters was tough. I had to jettison things that I had once considered sacred, and truly find what the rocks in my river were going to be--which things would define me that everything else would have to flow around. Only I was not going through this alone.

Rachel had her own transformation. Her professional life was in question. Her circle of friends was changing. Her life was in service of another's. It was during this time that we established a rule in our marriage that would eventually become a bedrock for our relationship.

The stress of our transition into parenting triggered a defense mechanism in both of us where any request for individual time was met with some combination of guilt and bartering. I could go watch a movie with my friends, but only after we agreed on when Rachel would get time to go out for a massage. She could go out for a jog, but only after I complained about the time she was choosing to do so and reserved my time to go play basketball. It was exhausting. It was petty. It was unloving.

There came a time when we realized that not only were we going about it the wrong, but were were 180 degrees from right. Making your spouse feel guilty for wanting some independent time only guarantees you will have that weight to bear when you need some time yourself. Requiring a tit for every tat makes each spouse an anchor instead of a propellant. It is cycle that breeds cynicism and contempt instead of trust and joy. And so we decided that the answer from then on would be, "Yes."

We agreed that no matter what the request was, no matter how inconvenient it was to the other, if one of us asked the other for time away, the answer would always be a guilt-free, "Yes."

It was a revelation. Being a parent and spouse was no longer an obligation. It was a choice. Both of us were equipped with enough innate guilt that we had no interest in taking advantage of the other given this new arrangement. This put the burden on the requester to determine what was reasonable and what was important enough to ask for. Each time I would ask Rachel for time to go out and she would respond with no strings attached support, I loved her a little more. I trusted her more. I wanted to return the favor. This became a rock in our river.

Approaching our relationship in this manner helped prepare us for the stress and strain that adding a special needs child can have on a marriage. Saying, "Yes," is much more difficult when it means looking after two kids and one of them requires full-time attention. Thankfully, we had plenty of practice in the years before Nate was born. Nate is now eight, and the rule is still in full effect. Rachel will soon be traveling overseas for ten days while I watch the boys. I travel regularly for work while Rachel watches the household. She has girl's nights out. I have Seahawks games.

We continue to grow and change and explore what life has to offer. Marriage, kids, special needs kids are often wielded as weapons that deter wives and husbands from getting the most out of their lives. It is a natural, instinctive reaction to circle the wagons. Those instincts betray you. Life cannot be lived inside circled wagons. Rachel and I have been lucky enough to discover that it was never our quirks and routines that defined us, it was our ability to let go of them. I look forward to giving and receiving my next, "Yes."

I Hate Behavior Plans (A Mom's Perspective on Marriage)

There are some parts about being a mom that I've got down.  I can cook a dinner that 4 people with different tastes and various dietary needs can all enjoy, and I can do it in under 30 minutes. I can negotiate an IEP meeting and not be intimidated by a table-full of district employees.  I can have honest talks about sex and drugs with my pre-teen without stumbling over my words, and I can translate Nate's rudimentary language accurately into sophisticated thoughts and ideas without even giving it a second thought.

There are other things I face as a mom that make me sweat and want to hide under my covers: 6th grade math, keeping the laundry going, firm discipline, and maybe the worst of all special-needs parenting obstacles: Starting and sticking with a behavior plan.  I hate (and stink at) picking a behavior Nate needs to improve upon, and then devising a plan to help modify the behavior.  Even as I'm typing those words I feel a sneer creeping across my face, and my blood pressure is climbing.  

Why do I sneer at the thought of a behavior plan?  Because I honestly think I'm biologically averse to little charts, and token systems, and "earning privileges". It doesn't work with my laid back, it-will-all-work-out attitude.  It's a lot of work, causes more problems initially, and tends to make everyone around me really grumpy! And to be clear, I'm not saying I'm OK with coloring on walls, screaming in restaurants and throwing toys out windows, but rather that I sort of hope they will work themselves out...

But here's the kicker: My husband, who can sometimes bother me with his stubbornness and rule-following,  is really good at this.  He's so much better than me at deciding something needs to be done, making the appointment with the behavioral specialist, buying the (stupid) tokens, and then implementing the plan. He's way better than me at ignoring the tears and negotiating tactics of a (supposedly) non-verbal child.  He's even good at getting me on board and actually giving out the tokens!

Co-parenting children with special needs is not always easy.  There are more decisions on which to agree (or disagree), more problems to collaborate on solving, and more high-stress moments/days/weeks than the average family.  We can't all be experts at all aspects of parenting.  The hope is that we can recognize our own strengths and weaknesses, and that our spouse can fill in the gaps where our skills and gifts leave off.  The additional hope is that even in the trenches, when toys are flying out windows and new wall art is appearing overnight, we can take the time to recognize the contribution we both make, and to be thankful for the gifts we both offer.  I admit I'm not always great at doing that, but I'm trying!  It's possible a token system would help, but it's not really my thing.

Keeping Your World Wide by Stacey Klim

I recently read an article about how women lose part of their identity when they become mothers. The article talked about how moms no longer have a picture of themselves on their Facebook page, that in fact their profile picture is typically a picture of their child (guilty as charged). The article went on to explain how we no longer associate ourselves as women who do this or that for a living, but we associate ourselves as mothers. I think this is  especially true for women who choose to stay home when they have a baby. For me, one day I was a teacher, the next day I was Jackson’s mom. It is even more true for those of us who have special needs children and suddenly find ourselves unable to work because we have kiddos who require above average care. When you spend a great deal of your week in the car taking your child between doctor and therapy appointments, you tend to forget about any career or career goals you once had. So what does that mean for us stay at home Mommies? I think it means we have to work a little harder to keep our world wide and not fall into the “our entire world is in our home” trap.

Going out with girlfriends, going to the gym, going out of town for the weekend. These were all things we do BC (before children), the trick is doing them AC (after children). It’s hard to keep up those connections and take time for yourself. I think a lot of Mom’s would agree that “me” time often consists of being able to go to the bathroom alone. Sad but true. Most days we are too tired from taking care of our children all day that we don’t have the energy to do something for ourselves. At some point we have to say enough is enough and make a conscious effort to get out of the house. The key to that though is having a supportive spouse or family member who recognizes your need and helps you achieve it. If you are a stay at home mom that generally means your husband is working to support the family. After working all day the last thing you want to ask him is to help you with the children. I feel that way a lot. But the fact is they are our kids, not just mine, so I ask him to help out. You may not be earning a paycheck, but you worked just as hard all day long. Telling your spouse you need a break is perfectly acceptable. Get out of the house. Go walk around Target for an hour. Go buy groceries, by yourself! Call a girlfriend and meet her for dinner. Find a Yoga class once a week. Do something, do anything! 

For me, I have a lot of things I have gotten involved in just so I can stay sane and mentally healthy. I am taking a Leadership Advocacy class through the Arc of Spokane, I am on the Board of Directors at the Spokane Guild School, I go out to dinner and a movie with girlfriends occasionally, I bought a treadmill (so I can work out after the kid goes to bed), and in the past 2 months I have traveled over to our State Capitol 3 times to speak to my legislators about disability legislation that affects my family. I couldn’t do all this without the support of my husband, who is wonderful and understands I need to do things for myself, to keep my world wide and wonderful. Dylan Thomas said “Somebody’s boring me. I think it’s me.” If you’re boring yourself, stop doing it. Find something that excites you, something that gives your life meaning, something that takes you away from being a mom for a while. It’s hard to do, but if you don’t make that effort to expand your world, well you won’t have much of one.

Read more about Stacey and her family at http://lifeonmysterylane.blogspot.com/.

Keeping My World Wide (A Self-Advocate's Perspective)

Jessica Renner with DDC Director Ed Holen

My name is Jessica Renner, I live in the 33rd district. My road to employment has been a journey of ups and downs, twists, turns, and loops. Starting in 2001  the year after I graduated from high school with DVR, WISE, and the Job Connection just to mention a few  agencies before ending up currently with DDD and SKCAC Industries and Employment Services. All together to date I've worked with a total of 10 job specialists overall. All of which have one thing in common, nobody has been able to find me permanent employment, all my history have been volunteer, and temporary positions. I know that finding employment is not easy especially for people with disabilities, and although I've had many successes while on my path to employment, including being a current active member of the DDC, SAIL, as well as having temporary stints with the City of Kent, Veolia Transportation, WAEYC,  and the Renton Community Foundation, all of which have been great work experiences,  however having the word staff associated with my name has not been one of them. It is my hope by sharing just a small piece of my story, I can change some minds, and open the eyes of everyone. I may have a disability, but I have always  had the ability to be a active and productive member in my community, and want, and deserve employment that gives me added meaning and quality in my life! As I want to be an example for others, and let people know that others can find there own successes on their own pathway.

I would like to thank you for being in support, and continuing to stand behind all services, and bills related to, and that effect people with disabilities. Being an individual that receives services myself, I am fully aware that without Medicaid personal care, and respite service hours, my life would be greatly impacted. Not allowing me to lead my life, not only in my home, but in the community, resulting in being extremely limited in what I do during my day as well as my pursuit to find, and maintain employment. I am lucky, and grateful to have my mom as my primary care giver, and a strong family unit to help me with all my day to day living needs, so I can continue to do what I enjoy, and advocate not only for myself but others who may be in similar situations, everyone needs services, and should have the right to access the services that fits their own situations Thanks again, for listening, and being in the continuous support of the developmental disability community.

Jessica Renner,

Employment Day Speech

February 13, 2013

Keeping Your Child's World Wide: A Dad's View

Anyone with a child these days is familiar with safety gates. Homes with mobile babies and toddlers turn into a maze of latches and lifts. Good luck figuring out how to open one of them. Whoever designed these barriers must have been "over-gated" as a kid, and has dedicated his life to seeking revenge on adults by devising a new, and more complicated, unlocking mechanism for each gate. That, at least, is my working theory. The goal of these gates is simple--create a safe space, and protect your child from the dangers that lie beyond. It is among the most noble of parental goals. It is also one of the  most misguided.

A great marine philosopher may have said it best:

Protective Father: I promised I'd never let anything happen to him.

Philosopher: Hmm. That's a funny thing to promise.

Protective Father: What?

Philosopher: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

The Tao of Dory

Dads cannot help it. We see the danger lurking around the corner. We see the glass placed at the edge of the table, begging to be knocked over. That anticipation has kept us safe, and those that we care about. Our job is to protect, both body and heart. Yet, that instinct can betray the very objective it is there to achieve. 

Eliminate all germs from your child's life, and their immune system will never have a chance to build up defenses. Keep them from ever having their heart broken, and they will never find love. 

As the father of a special needs child, the urge to protect often combines with the fear of embarrassment to form a potent cocktail of isolation. Nate and I can stay home and both of us will be safe from what lies beyond. The front door is our safety gate. 

Yet, we work to overcome the fear. Or, at least I do. Nate is naturally fearless. I do my best to put us in situations that have positive outcomes. He still fits in the bike trailer, so we go for a long ride. He still likes to ride in the shopping cart, so we hit Costco. I may never be completely at ease in public with Nate. It is less because I do not trust him, and more because I do not trust myself. 

It takes a special gift to handle embarrassing situations with grace and dignity. My wife has that gift. I tend to get angry. The direction of that anger is unpredictable, and the outcome is rarely something to be proud of. 

Embarrassment is a self-inflicted wound. Nobody can make you feel embarrassed. Nate is proof of that. Judgment, however, is a weapon everyone wields. Nate has helped us find people that we can be around without fear of judgment. We joke about his ability to find the pure-hearted. Certain people just "get" Nate. People like the Ballingers, the Streichs, the Weicherts create safe places beyond our safety gates. They allow us to experience the world with pride and not shame. We are forever grateful. 

Come to my Birthday Party

It doesn't happen very often, but Nate was recently invited to a birthday party.  The pink, Little Mermaid-themed envelope was handed to him by a classmate after school, and Nate's shy smile told me how much the invitation meant to him.  Not surprisingly, the invitation put more than merely a small smile on my face.  I spent the afternoon beaming!  My child was being included!  My child was part of the community!  Nate's classmates like having him around!

But my elation eventually faded, and by the evening it was replaced with gnawing concern.  I can't just send Nate to a party without supervision. He isn't much for group-activities, and quietly fitting in is not his strength.  Did the parents of Nate's classmate want me to attend the party with him?  Is it weird if I go?  Is it weird if I don't go?  Will they be doing an activity that Nate will be able to participate in?  I know the birthday girl wants him there, but what about the other children at the party?  Maybe the birthday party isn't such a great idea for him...

Nate's world is more than just his home and his school, where the people around him accept and accommodate his eccentricities and special needs.  His world includes places where he's expected to conform, behave and fit in.  As his parent, I have a constant goal to widen his world.  I want him to feel he belongs, be it at the grocery store, the playground, Sunday School or a classmate's birthday party.  However, keeping his world wide means a lot of effort, work, and stepping outside our comfort zones.  It means letting Nate sit in the drivers seat of the enormous shopping carts with steering wheels even though he's way too old.  It means overhearing children making fun of him on the climbing structure because he's acting strange.  It means pre-planning, preparation, practice and hard work.

This month, it means calling the birthday girl's mom to ask her thoughts on Nate coming to the party.  It means taking some extra steps that typical parents don't have to take, including finding out what the party activities will be and writing a social story to help Nate prepare.  It will probably mean attending the party with him, and working hard for 2 hours to keep Nate interested and involved in the games of his peers.  It will definitely include a degree of sadness when the other parents wave goodbye and leave their kids for 2 hours, and I have to stay behind and monitor my child.

Keeping Nate's world wide, vibrant and multi-faceted is not always for the faint of heart.  It takes effort and  commitment, time and energy.   More importantly than what it takes, however, is what it gives back.  Nate smiled when he was invited to a birthday party.  Nate will find joy in giving his friend a present.  Nate will love singing happy birthday with the other kids.  When the party is over, and I'm no-doubt exhausted from the effort, Nate's world (and the world of his peers and their parents) will be that much richer, and that much broader.

We'll keep our eyes peeled for the next birthday party invitation.

Keeping Your World Wide

It's February, which means it's time to address our newest topic, "Keeping Your World Wide"!  Please share your thoughts, advice, feelings, or stories of success (and failures) regarding your efforts to create a broad sense of community for your family member with disabilities.

Poem for an Autistic Child

                                                   A Tribute to August                                           

                                         

To soar on wings of eagles

to glide along the glade

to bounce and jump and whirl and twirl

to dream and search and sway.

He has so much in common

with you and me you see —

a bright and charming sweet young boy

who senses all with clarity.

To hear, to see and touch and smell,

he takes all in so well,

his self expression is unique

his feelings hard to sell.

We might whisper, he might yell

but one can never tell.

He likes himself and folks like him

and that works out quite well.

August has needs and we have ours,

life comes with give and take ―

love and comfort, peace and joy

needs all share, so we partake.

A smile, a doubt, a look askance

a wave, a nod, a sigh —

He needs hugs and love at times,

same as you and I.

He gazes on the sights nearby,

is stirred by beauty there.

A swan takes flight, a songbird sings,

if only he could fly.

Unspoken words may bite his tongue,

but thoughts within belie.

A word from Mom, a smile from Sis

unspoken things give him answers to why.

Show him love and friendship now

his joy you’ll never miss.

  Don’t ever leave just stay nearby,

he just might make you cry.

August is a special child

and August needs a friend.

August is a special child  

And August is my friend.

  a poem by Rich Weatherly, October 7, 2011

For more from Rich Weatherly, visit http://richweatherly.wordpress.com/2011/10/10/poem-for-an-autistic-child/