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!