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