Good Enough

I am the mother of a mentally handicapped 8-year-old son, Andrew, but that is not the sum total of who I am! In addition to being Andrew’s mom, I am a wife to my husband of 13 years, and I am also affectionately called “Mom” by three other boys (Zachary, Matthew--12 and Logan--2).

 

Along with his mental handicap, Andrew has some behavioral challenges as well that we struggle with daily. He is impulsive and aggressive at times and has difficulty accepting being told “no”! Some days are worse than others, but Andrew and the other boys will grow up and one day leave the proverbial “nest.” My husband and I will once again sit across the breakfast table with only two place settings.

 

So, imagine the conflicting emotions when I read of yet another class we could attend that promises to help us help Andrew learn to control his impulsive behavior … or a seminar on how to teach him self-control … or a symposium on legislative issues for disabled children. The list of opportunities for the disabled has grown tremendously over the last few decades. People with disabilities are given more opportunities now than they ever have. I don’t want to shortchange Andrew in any way, but I have to realize my limits.

 

Is my role as Andrew’s caregiver to run here and run there seizing every possible opportunity that presents itself with the hopes of improving his life? Yes….and no! Yes, I am to do all I can to help him succeed, but I don’t believe I am supposed to do this at the expense of my marriage or my other children. Life has a way of taking over if we don’t slow down to make conscious choices about how we want to live. This is especially true for parents of special needs children. We have been given a gift in Andrew. It takes time to unwrap this gift. My goal as the recipient of this gift is neither to CHANGE Andrew nor to make him better. My goal is to create a life for him in which he can be a generous, caring, compassionate, individual who will succeed in this world; however, the definition of success is a personal one. Success to us sometimes means staying home, having some popcorn and watching a movie. That might mean missing out on all those so-called opportunities in order to just be a family and enjoy one another. The seminars, classes and symposiums can’t unwrap the gift inside of Andrew like we can. Sometimes I wonder if we run around accessing this service and that service in order to change the reality of having a disabled child. Andrew will hopefully learn how to hear “no” and that he has to control his temper, but he may never be toilet trained. Andrew will hopefully learn enough life skills to live on his own, but he may never go to college. It’s been difficult accepting reality as less than ideal. Our family will never be “perfect” or “ideal,” but it is GOOD ENOUGH!!!

Do You Make Time for Yourself?

How often do you hear this statement, “it’s important to take care of yourself.” Sure, give me an extra 24 hours in the day and I’ll get right to it. Truth is, you can keep going, running on adrenalin and stress hormones then one day, your body says no more and you have nothing left to give. Or like in my case, what you do give isn’t so pretty.

Since time is one of our most precious resources, and unfortunately not one of those renewable ones how do you make time for yourself?

I’d like to offer one simple, yet powerful way that takes very little time.

Breathing.

Here’s a story to show how and why it works.

First, let me give you a little background on my greatest teacher, my beautiful eight-year-old son, Ian. He has autism with many co-occurring conditions including seizures, allergies and reflux. He’s also non-verbal so when he gets sick or experiences any type of distress I become a detective. If you’re a parent with a non-verbal child you know what I mean. We learn to be the expert sleuthers.

Tuesday afternoon Ian started to cry big tears that told me he was in pain. He looked at me with his pleading green eyes that said, “Mommy, please make it stop.” I recognized this behavior. If I didn’t step in and help him calm down his behavior would escalate to a state of panic.

His nose started running like a faucet and his reflux went off the charts. Was he about to throw up? My thoughts raced to figure out what could be happening in his sweet little body. My brain quickly reviewed the events of the past several days in search for clues. Did the seizures throughout the previous two nights have anything to do with this? Could it be an allergic reaction? Was he coming down with his brother’s chest cold? I felt my own fear and anxiety increasing.

Then I stopped.

I realized it didn’t help either one of us to get all wound up full of stress and anxiety (as he’s especially sensitive to what I feel) and that just gets us both tangled up in fear and panic.

Instead, I called on one of my favorite methods of self-care to calm down my nervous system so I could think more clearly and create a peaceful space of safety for my son.

I began to breathe deep-belly breaths. I did this for about a minute while I held him and felt my entire body relax and release the emotional tension. The breathing interrupted my stress cycle, which allowed me to calm down and think more clearly.

I decided to give him Benedryl and wait it out. It took over an hour for the Benedryl to kick in and while we waited together I continued my deep belly breaths and I felt his body relax against mine. Almost immediately he stopped crying. He still had the reflux and his nose kept running but he calmed down. Eventually, the faucet of his nose stopped and his reflux improved. Turned out he did get his brother’s chest cold and his body is now working to heal. It knows what to do.

What I’ve learned over and over again is how my own emotional state affects my son. When I’m stressed he feels it and we loop together in a spiral of fear and anxiety. When I find the way to keep my own nervous system in a state of peace and calm, his nervous system starts to synchronize with mine and he relaxes and calms right down; and that state of calm is where the healing occurs.

You’ll find the breathing process outlined below. I invite you to give it a try. If you do, please share your thoughts in the comments.

Breathe. Not just normal breathing; I’m talking about deep, abdominal breathing. Try it for three full breaths. This takes less than 30 seconds.

• Get into a comfortable position.
• Close your eyes, after you’ve read the rest of the steps. J
• Breathe in through your nose and out your mouth for three breathes.
• As you inhale, feel the breath fill up your belly and feel it expand. This is not the time to worry about holding your belly in, just let it relax.
• Slowly exhale out through your nose or mouth, whichever feels most comfortable.
• Try to make your exhale twice as long as the inhale. For example, inhale for 2 counts then exhale for 4 counts.
• Focus your awareness on the breath moving in through your nose and out through your mouth or nose.
• Open your eyes and ask yourself if you notice any changes in your body and emotional state.
• Try this when you’re feeling any sense of overwhelm or stress. You can repeat this three-breath technique up to ten times when you’re in a heightened state of anxiety but even one time can help break the stress cycle.

Diane Hunter helps overwhelmed parents find a sense of peace and a deeper connection with themselves and their child. She’s passionate about teaching the power of non-verbal communication and writes on her blog at www.afterautism.com. On most days you’ll find her hanging with her two greatest teachers, her children, and her husband in their home in Los Gatos, CA.

Learning to Let Go

Any moment everything can change
Feel the wind on your shoulder
For a minute all the world can wait
Let go of your yesterday

Can you hear it calling?
Can you feel it in your soul?
Can you trust it's longing
And take control?

Fly, open up the part of you that wants to hide away
And you can shine, forget about the reasons
Why you can't in life and start to try
'Cause it's your time, time to fly

FLY by Kara Dioguardi & John Shanks

When Nik was born —so early, so fragile and vulnerable —I feel like I was reborn, too.  Everything I thought I knew about who I was and what was important changed in a thready heartbeat; my life became completely enmeshed with his.  I have been the center of his universe, and he mine, from the moment he arrived.

After nearly seven very intense years, it feels like we are both moving into a new period.  Nik has shown that he is finally ready for school and we are both, admittedly, ready for a bit of a break from each other.  We’ve moved out of the realm of medical crises (I hope!) and are ready for the business of learning and growing to commence in earnest. 

It’s not as easy as I thought it would be.

I confess, each day when I drop him off at school with his too-big backpack and his “talker” (speech generating device) I have more than a few moments of panic.  My heart races as I wonder who will make sure my too-thin child eats enough or my fearless boy won’t run head-first into concrete walls.  Who will help him weather the sensory storms which still cause him to drop to his knees and gouge at his face and neck?  Who will help him learn to navigate the seas of building relationships with peers who may mimic and mock?  Who will understand him if his talker breaks?

It’s not easy for either of us, but I know that he needs this struggle as much as I do.  We need to grow stronger apart from each other.  He needs to begin to make his way through a world which won’t always include his Mama and I need to let go, just a little, so I can find parts of myself I’ve either let languish or have not yet discovered.

 We are blessed to have a team of people working with and for our son to find the right supports, the right placement, the right methods to help him express the knowledge he has inside his wordless self.  It is the confidence in that team which gives me the strength to let go, no matter how small the increments may be.  It is that which allows me to sit at my dining room table putting words out into the ether while he is at school.  

It is a gift I don’t take lightly.  I hope it will give us both wings.

 

I Like Chocolate With Peanut Butter Frosting

Friends who run marathons are celebrated with trophies and medals.

Friends who perform in theater troupes get flowers.

Friends who get books published are given lots of accolades.

 

Well, girlfriend, I saw you clean that J-tube like it was nothing,...you who were so afraid of blood! I've seen you navigate a two hour tantrum without losing your cool. I've noted your grace when people act like your child doesn't exist because they don't know what to say. I've seen you run ragged chasing your child who moves like a tornado. I've witnessed you truly see my child, even when your own child(ren)have so many needs.  

 

The feats special needs parents perform require more endurance than a marathon. More spontaneity than the best actor, more discipline than the most dedicated writer.

 

If you can swing it, bake (or pick up) a cake for your favorite special needs parent today. Of course find out about any possible food restrictions in the family first.

 

It won't take away all their troubles, but it will make their day. 

 

It would say, I see you. I acknowledge the amazing dedication, resilience, and courage you bring to the game every day.  

 

If I could, I'd bake all of you a cake.

What's your favorite flavor?

 

 

Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect Parent, Age of Autism, Cool Cleveland and Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter, a professional publication for occupational therapists. She blogged for years at Fullsoulahead.com.

 

Diversity

Jennie and I were touring a local private school two years ago while shopping for the perfect academic world for our little special needs guy.  We were wary of public school’s focus on academics (we’d heard tales of 45 minutes per night homework in Kindy!), and longed for our precious one to go to a school that embraced individuality and different learning styles; one that honored emotional intelligence and right brained-ness.  As we toured, there was one word proudly repeated more than any other to describe the student body of this particular private school:  diverse.

Turns out they have a scholarship program that allows minority and lower income families to attend the school.  As I walked across campus, this diversity was everywhere evident:  children of all color and creed happily bounced from class to class, played at recess and studied in the library.  I loved it. 

My wife and I have had a little tug of war since we met.  I am the product of public schools, and she of private.  She’s always maintained that private schools are simply better.  While I concede that I like the idea of smaller class sizes and progressive curricula, the one thing private schools lacked (I thought) was diversity.

But this was a private school that placed diversity near the top of its list of important qualities.  After the tour, Jennie and I were both in total agreement:  this was where Graham needed to go. 

Long story short, Graham didn’t get in.   And as it turns out, it was a blessing.  He’s happily going to our local public school.  But a question bubbled up inside me after this experience, a question about whether there is a type of diversity that perhaps this school has over-looked. 

What -- I kept thinking -- about developmental diversity?  

Right now in the public schools the buzzword of the day is “inclusion”.  In the past, special needs children were separated from their peers and placed in their own “special ed” classrooms.  But lately communities have been realizing the importance of including children with special needs into mainstream classrooms, both for the students with special needs and the typical kids.  Including these children does not come without considerable challenge:  Placing a child with significant needs into a classroom of 30 kids and one teacher can quickly overwhelm the teacher, compromising everyone’s education.  Still, finding a way to make it work is one of the important frontier issues facing our educational system. 

During our private school tour, I remember asking the woman leading us what kinds of sensory accommodations they had in the classroom for children who might have some mild sensory needs.  Off her blank stare I followed with asking if the school had an OT on staff to consult with teachers.  Turns out, this private school is like most – they don’t have any apparatus, training, or desire to accommodate children with special needs.  And I understand why.  Think about the expenses involved with this:  hiring OTs, PTs, speech pathologists, school psychologists, running IEPs, providing aides and shadows, on campus therapy clinics and equipment.  The costs would be huge.  And what’s more, since public schools are required by law to provide free and appropriate education to these kids, perhaps servicing children with special needs is better left to the public school system. 

Dan Habib, a father and acquaintance of mine, who made the wonderful and important documentary film Including Samuel (www.includingsamuel.com) argues that inclusion is a civil rights issue.  Segregating children with special needs only deepens the stereotypes and prejudices about them, and perhaps most importantly, increases the odds that low expectations will result in disappointing outcomes.

I’m not suggesting that private schools like the one we applied to should expand their definition of diversity to include children like Graham.  The fact that they see value in any diversity at all is a huge leap forward, one most private schools can’t hold a candle to.  But I do think it’s worth noting that this missing element in their student body is unfortunate, both for the school, its students, and the children who get turned away because of their extra needs.  And the bottom line is, it limits the diversity they so treasure.  

Another result of this no-special-needs approach, is that parents are motivated to hide their child’s developmental issues and learning challenges in order to increase their chances of acceptance.  Teachers then report a fair number of “quirky” kids, who as a result of the secrecy come with no warning into the classrooms of ill-equipped teachers.

We decided to do the opposite.  We came forward with the whole story about what Graham had been through and how far he’d come.  But what I didn’t see at the time, that fortunately the school’s admissions staff did see, was this simple, irrefutable fact:  this was not the right school for Graham. 

And Jennie and I both shared a moment of realization:  we loved this school because we believed it would have been the right school for us! 

Three weeks ago, Graham started first grade.  He has a full-time aide provided by the district. He gets OT, PT and Speech both push-in and pull-out.  And he gets to go to school down the road, with kids from the neighborhood.  And the school, which, ironically, is less diverse racially and economically than the private school, due to our local demographic, has one kind of diversity they can’t match. 

I'm No Expert

I am not an expert at anything.

I am not a fine-tuned athlete with golden trophies lined on a shelf in the living room. Music and art are like foreign languages to me. I am not a banker, a lawyer or a CEO. I have trouble just balancing my checkbook. So when my son Nicholas was born with Prader Willi Syndrome, I found myself completely unprepared for the job.

Physician's from Children's Hospital handed me my tiny infant amidst a flurry of complex medical terms. Words like hyperphasia, hypotonia and cryptochidism were thrown at me like icy snowballs thrown from some anonymous attacker. Geneticists and endocrinologists surrounded my bedside like nervous advisors briefing the President on the latest global crisis. Critical medical decisions were now presented to me for immediate answer. Did I want my son to have a tube placed in his nose or stomach? Do I want to consider giving my child growth hormone injections? Here is your list of upcoming doctor appointments.

My role in life was now clearly defined and my son's precious life depended on it.

My easygoing life was officially over. Treading water was no longer an option. A clear life's purpose with devastating consequences had been thrust upon me. It was almost as if since I had not bothered to define who I was, God decided to do it for me. And while I wasn't wearing red spandex tights and leaping tall buildings in a single bound, I suddenly realized that like it or not, I had become a superhero.

Suddenly I could relate to the hardships of the likes of Clark Kent, Peter Parker and Bruce Wayne. These colorful cartoon caricatures now held the key to my success as a parent of a child with special needs. Like them, my identity as a superhero was cleverly concealed beneath the disguise of a mild mannered stay-at-home mom. As a fledgling caped crusader, my new responsibilities of fighting and advocating for my son felt uncomfortable, awkward even overwhelming. I was reluctant to utilize these powerful new abilities and fine-tune them into the superhero skills needed for defeating the most fearsome of foes. And although the future of the world did not rest in my hands, the quality of life for my child most certainly did.

My superhero powers are even more impressive than slinging a few spider webs or running faster than a train.

I can thread a feeding tube faster than a speeding bullet.

I understand acronyms like IEP, AFO, ABA, GH, UPD, CoQ10, IGF-1, BP-3 FISH and MEM.

I can recall all 11 names and phone numbers of all 11 specialists we see at Children's Hospital.

I am able to understand complex medical terms in a single doctor's visit.

I am able to negotiate, with my eyes closed, the harrowing halls of the parking garage at Children's Hospital in Boston.

Wielding my magic PWS Medical Alert Booklet, I have single-handedly educated countless ER doctors, dentists, anesthesiologists, primary care physicians and nurse practitioners on all the medical complexities of Prader Willi Syndrome.

I can calculate the number of calories in a lunchtime meal faster than you can say, pass the butter please.

I can divert a full-blown temper tantrum just by singing a song or asking a question.

I wear an invisible force-field perfectly designed to repel thoughtless comments and ignorant remarks like: I think I have PWS, It could be worse, or Just a snack won't hurt.

I have a monthly schedule of appointments that rivals the Secretary of State.

I spend more time speaking to teachers, therapists, physicians, and psychiatrists than I do speaking with my own family members.

I can design an IEP that reads like an owner's manual.

I can activate my superhero laptop, and like the bat phone to the commissioner's office, I can instantly connect with fellow superheroes from around the world who share the same evil arch enemy as me.

Like the lone superhero, misunderstood by the world, I too feel a sense of loneliness that comes from living a life few can understand. I too feel unappreciated for the mentally and physically exhausting role I play in saving a life.

When my son Nicholas was first diagnosed with Prader Willi Syndrome, I wondered how the world would change his life? What I never realized was just how much his diagnosis would change mine. And while I don't have shiny blue black hair and ride in the bat mobile, I have come to realize that like my superhero comrades, perhaps by embracing my new persona and using it to spread awareness and hope for my children, the world will become a better place.

 

Lisa Peters is superhero mom to Weston 11 and Nicholas 8 and wife to Jeffrey. To read more about their adventures fighting the diabolical forces of Prader Willi Syndrome and ADHD, visit them at their newly created blog: On a Life Less Perfect at http://www.onalifelessperfect.blogspot.com. Same bat time. Same bat channel.

To learn more about Prader Willi Syndrome please visit: http://www.pwsausa.org.

In Search of My Path

Last week, as I was driving across town to Oscar’s school to pick him up and take him to his weekly OT appointment, I heard the start of NPR’s Talk of the Nation. Neil Conan was introducing his guests who had researched and written an article in an upcoming issue of The Atlantic about the first generation of children diagnosed with autism. Their aim was to see how these children had fared later in life, to see what insights could be gained into how adults diagnosed with autism as children cope once their parents are gone. 

I was fascinated.

The first thought that popped into my head as I listened to the introductions was one of excitement and possibility: “I wish I was a researcher. I’d love to get immersed in that question.”

My next thought was one of regret: “Who am I kidding? I don’t have time.”

Lately I’ve noticed that I seem to be searching for some sort of path in my life -- some clue as to what I want to do next, and some hope that I’ll actually have time.  After nearly ten years of doing the disability shuffle and twelve years of total parenting I’m so busy tending to everyone else’s needs that I’ve lost track of my own goals.  I take care of myself in little ways – squeezing in a long walk, meeting a friend for coffee, occasionally reading a non-disability related book, but I feel the years starting to whiz by while I discuss typing programs and positive behavior reinforcement and devise systems for sensory breaks.  With all the appointments, meetings, emails and phone calls it takes to raise a child with a disability, I’ve lost touch with who I want to be.

In my former life I was an actuary working in pension benefits consulting.  I created complex spreadsheets and got days off of work to study for math tests. I loved the math but I didn’t love the “big picture” so I became a graduate student in city planning focusing on transportation finance. I used to really care about how gas tax revenues were spent and wanted to see higher tolls instituted on bridges during peak travel hours.  

And then Oscar was born and I was rocketed into the special needs world with nary a backward glance to my own interests.  

Just two minutes into the radio program about autism I arrived at Oscar’s school. I parked the car, punched in the gate code, and rushed up the stairs to his fourth grade classroom.  It’s always a scramble on Wednesdays to transition Oscar out of the classroom and into the car where he eats lunch on the way to OT. Oscar was putting away his science materials when I arrived, but stopped to show me the activity he had just finished – it turns out that a paper clip can stick to a nail if you touch the nail to a magnet.  I listened while also trying to talk to his teachers about homework and an aide substitute for the following week and help him pack up his bag.  We only had ten minutes to get to the OT appointment so I was definitely coaxing Oscar to speed it up.

In all the rush, I forgot about the autism program and was only reminded when the radio came back on as I restarted the car.  The authors were now discussing Donald T., a man in his late 70s who was the first child diagnosed with autism. Donald was considered to be severely autistic as a child and was even institutionalized for a short period until his parents, who were both strong advocates and wealthy, pulled him out.

One of the authors, also the mom of a child with autism, marveled at how much Donald T. had changed over his lifetime.  He still exhibits many characertistics of his autism diagnosis, but Donald now lives independently, plays golf, and travels out of the country every month by himself.  She didn’t think he would have thrived if he had lived in a big city or in an institution.  His individual wiring, she felt, along with his parents’ resources and the protection and compassion of his small town community are what allowed Donald to reach his potential. 

This last comment about the role of Donald’s community in helping him reach his potential brought me to tears.  

I’ve advocated fiercely over the years for Oscar’s placement in a small independent school in our town.  Most of the reasons for this placement revolve around food -- in short there is too much emphasis on and access to food, healthy and unhealthy, in our local public schools for Oscar who has Prader-Willi syndrome. 

But, just as important, is the community-wide academic and social support Oscar has received at his small school.  Oscar’s teachers implement an engaging and hands-on developmental curriculum that Oscar is excited about and can participate in at his level.  Oscar’s sixteen classmates, largely the same ones he’s been with since kindergarten, have grown over the past four years to know and accept his strengths and his quirks, much like siblings. I have talked openly with these kids about Oscar, always thinking that they will want to vent about the more challenging parts of the disorder – perhaps the stuttering, or the slow processing or Oscar’s strong opinions.  But usually they steer the conversation to ways to pull Oscar into games and conversation more seamlessly.  These kids understand that inclusion is far more than just not excluding.  They understand acceptance.

Last year, in the class play, the kids took turns very subtly cueing Oscar – holding his hand to enter the stage, exaggerating their own gestures for him to copy, and gently tapping him on the shoulder when it was his turn to speak.  I’m pretty sure no one instructed them to do this – it’s just what they do.  At our PWS fundraising walk in April, one of Oscar’s classmates came with her dog and the two of them walked the entire loop together, talking and talking.  Two weekends ago Oscar marched in the town parade playing the bombo with the Latin American youth ensemble that he joined three years ago.  Kids from his class happened to be at the parade and they waved and shouted “Oscar! Oskie!!” while Oscar smiled back, marching confidently down the crowded street. It is hard to believe that fourth grader Oscar is the same kid who in kindergarten sat through school community meetings with his hands covering his ears, who hid under the table and refused to draw when the markers came out, or sat on the teacher’s lap when the class performed a song.  

I credit this school -- his teachers, the staff and certainly his classmates -- for creating the kind of compassionate learning and social environment that has allowed Oscar to thrive, to gain confidence in himself, and to reach his potential in a way that I really never dreamed possible when he was a little kindergartner.

When I think of Donald T., the first child diagnosed with autism, now sitting as he does every morning having coffee with his cronies, I know that all the advocating, scaffolding and support I provide to keep Oscar in this small school and active in our community, has been worth it. I may not have found my path yet, but it is certainly consolation to know that what I am doing might benefit Oscar well into adulthood.

 

Mary lives in Northern California with her husband and three kids. She blogs at Finding Joy in Simple Things even when she should be returning phone calls and replying to emails.

Getting Back Up

I am a Hopeful Parent.

Usually

In January of this year our oldest son, who has multiple and complex neurological and mental health needs, began to deteriorate before our eyes. He was in crisis and we did not know why and we certainly did not know what to do to bring him back. We struggled for many, many months to get him the services and treatment he needed in an attempt to stop the downward spiral and save our family.

One day this past June I found myself sitting in front of a Social Worker at the residential treatment centre my son had been admitted to 200km away from our home. This kind man looked at me at the end of our session and commented "your resiliency is astounding". A sentence meant to be empathetic, for some unknown reason, made me unravel and it suddenly hit me that I had not one ounce of hope left in me. I'm not sure how or when it had happened, perhaps like everything else in my life at the time it just slowly eroded each day until finally there was nothing left.

I then cried for two days straight. I sobbed while I was driving, I had tears rolling down my face as I went through the fast food drive through (those poor people!), I sobbed so hard during my son's case conference that those present began asking me questions that I could answer with a nod or shake of my head because I could not speak. I woke up in the middle of the night with my pillow wet and tears streaming down my face. There was nothing stopping the tears and I was too exhausted to even try.

I felt like I had nothing left to give. For eight years I had poured my heart and soul into this little boy. I loved him so deeply and completely. Now I sat there feeling as though there was no hope. No matter how hard we all worked, no matter how hard we loved him, there was so much we just could not make better. I was terrified for his future and for the future of our family.

After the case conference I drove two hours home, sobbing the entire way. Later that same night we were scheduled to attend an annual general meeting of our local Family Network - a group of families of loved ones with disabilities who offer support, resources and training to other families and the community. I had been looking forward to it and now I dreaded it. I contemplated backing out at the last minute but something deep inside told me to go.

That night my husband and I sat in a room filled with families who were also walking this road with us. Some were many years ahead in their journey, some were just starting out. It didn't matter the specific diagnosis or severity of needs of our loved ones. We all had experienced similar, difficult things in our journies - rejection, pain, fear, exclusion. But all of these people also held onto something else, something I desperately needed. HOPE. They believed in their loved ones, they had hope for the future. They saw the strengths and gifts, not just the diagnosis. There were women there who had given birth to children in a time where no one with a disability was referred to as "special". They were instead thought to be burdens who were better served being signed over to live out their lives in institutions away from the rest of society. These men and women had refused to give up their children and dared to blaze trails. They dared to dream and fought for inclusion and held onto their hope for their children's futures. These people had celebrated their children and their unique strengths and gifts. They held their heads high as they built communities around their children and families. They lobbied governments and changed policies and services. They had faced an uphill battle the entire way and yet there they were that night, celebrating and smiling. 

I sat during the speeches and presentations and tears once again began to stream down my face. This time instead of feeling like I was in a deep dark hole of hopelessness I was crying because I was overwhelmed with feelings of joy, love and HOPE. The hope that had been chipped away at slowly over the years was restored in a single night. I knew the families that surrounded us understood our pain and sorrow even though we had not shared our story with them. I knew when I made fleeting eye contact with a woman that the details of my son's story did not matter, she intimately knew my grief, my desperation and  my hopelessness. Toward the end of the evening that woman approached me and  took my hand, pulling me close to her. She said in a quiet and even voice, "I remember those days I felt hopeless, ready to give up. It's okay to fall down, just make sure you get back up".

I just wanted her and my son and all of you to know that I am back up.

 

mom2spiritedboys is the mother of two very spirited boys and is now embracing extreme parenting in the trenches after trying to fight it for many years. She is married to a wonderful man who works hard to ignore the state of disrepair of their home and made her the happiest woman on earth when he took over laundry duty in its entirity in September 2009. You can read more from her at her personal blog Spirited Blessings

 

Typical Circumstances

Here I am, leaving my contribution for this month down the last minute, as usual. Down to the last 46 minutes, to be exact.

I remember, before I had children (something like a lifetime ago, really) that I had always felt, and said aloud, that I could never, ever have a child with special needs. (although I'm sure in that lifetime, I didn't use the term 'special needs') I always felt that there was no way I could handle that reality, no chance that I would be able to rise up and parent anything but a 'normal' child.

(Do you hear that? That's the universe laughing at me.)

But honestly, I had added up my own perception of my abilities and my worth as a future, hypothetical parent, and found myself inadequate to handle anything but the most typical of circumstances.

Life, of course, had other plans for me. Our first experience of typical circumstances came with the birth of our second child.

As I'm sure other parents of special needs children do, we scrutinized her, and watched her, and analysed her every move for an indication of differences, and found none. She is different from Noel in so many ways, But because we also had no barometer for normalcy, we also couldn't be sure if she was on pace.

Noel was using sign language at 11 months, speaking in short sentences by 16 months. At 16 months, Holland was saying one or two incomprehensible words and occassionally using one sign. Was this normal? She seemed so behind, of course, when we compared her to Noel.

A speech assessment confirms that she is, in fact, behind - a moderate language delay puts her about 9 months behind the curve. We left the assessment with handouts and instructions for how to play with her, and how to talk to her, and how to encourage language development.

One thing I got to enjoy, that I feel like I missed with Noel, was the abilty to just move through free form days with no need for... interventions, for lack of a better word. And though I of course won't compare Holland's moderate language delay with Noel's Aspergers, at least not in a direct way, I have to admit to a tiny bit of frustration that now I have to take those little moments, just spent with my girl, and turn them into learning opportunities - correcting words said wrong, encouraging her to put words together, insisting she use words for things she needs.

Typical circumstances. I'm starting to understand that typical circumstances might have been something I created in a dream world, the same one in which I cook everything my kids eat from scratch, grow vegetables in my backyard, keep my house spotlessly clean and have time alone with my husband on a regular basis. The dream world where my children are perfect, polite, independent, and brilliant, who meet every milestone on target, and who sleep through the night from birth. I decided before I had children that I could not handle anything less than this, or anything more than this.

(Do you hear that? The universe thinks I'm hysterically funny.)

***

Stephanie can be found at her blog, although sometimes it is woefully neglected and a bit dusty.

 

Five Things I've Learned as a Special Needs Dad

Really, I don’t need to tell you that raising a child with special needs is one of the toughest challenges a parent - mother or father - could be tasked with. Parenting, in general, is a very tough task but when you have many additional ‘needs’ on top of that, the challenge is emotionally and physically exhausting.

I’m a father of an eight-year old with cerebral palsy, a typical two-year old and a six-month old - the latter has yet to be diagnosed but we’re pretty sure she will have cerebral palsy due to a medical-error induced brain injury.  Perhaps your child has a different diagnosis or even none at all as our youngest does. That’s ok; we’ll find our common ground as parents.

Since the phrase “special needs” covers such a broad spectrum of diagnosis and types of children, we’ve all earned our qualifications to share our truths about raising, nurturing and improving the lives of our children, so I hope the information below helps you on your colossal journey as a parent.

The first thing I’ve learned as a special needs father is that full-proof plans are a fallacy. My wife and I can recall countless times when we’ve thoughtfully planned, planned and planned some more - only to find out that the next step, whatever it was related to, was never how we had imagined it to be. Our planning ranged from when we’d have a procedure or surgery scheduled to how we were going to execute a flawless family vacation or a simple break from parenting (if we ever were able do so…).

We wasted so much time planning for the best times, scheduling to having a simple dinner, but our child or circumstances always willed something different. For example, I can recall a simple drive to our parent’s house turning into an emergency room visit. We’ve learned over the past eight years with our children that we have to be quite flexible and take each day for the joy or heartache that it is.

Now, we live each and every day in the moment, but still simply draw out our rough roadmaps in planning (and believe me, my wife is a super planner). All we can really do is try to be prepared for changes in plans (and attitudes) as each day or event unfolds. This approach has helped us remain calm and peaceful with each new twist and turn of our care-taking and parenting adventures. We’ve accepted that outlines for plans are ok, and we fill in the blanks as we go along, and communicate through the entire process so that we come to decisions as a team.

The second thing I’ve learned as special needs father is that you cannot sacrifice your family for your job. As the sole breadwinner in our family, I thought for a long time that working harder and smarter away from, and at home, would lead to more financial success thus making our lives easier. In some insignificant way it has, but in a much more detrimental way it has not.

Money is nice, especially for special needs children who have limited access to funding for all of the medical and transportation accessories they need, in addition to the numerous other things that insurance or society deems unnecessary to live day in and day out.

However, once I learned that my time is much more valuable at home, work took second fiddle to spending time with my family. Even though, I continually use a large portion of my vacation time for appointments, surgeries, etc, it was not the sacrifice I had once thought it was, nor were all of the extra hours of work.

The moments of respite that I provided for my wife were immeasurable for her sanity. The emotional support that she needed came from just having me at home more on the weekends or evenings. Skipping lunch with coworkers - a much-admired political move in corporate America - to join her for appointments or just have lunch at home with her as much as I could get away, have helped us cope with each challenge in more meaningful way. This also helped us work at a team and collaborate with great conversation to deliver our care-taking duties.

The third thing may seem obvious, but it’s important to understand that coping with having a special needs child is a grieving process, a kind of loss that only we can understand.  I know about loss, too. Right before our oldest child was born, we lost her twin sister, just a week before the other's premature arrival. 

We did not have time to grieve the loss of the unborn baby because we had medical challenges and a long stay in the NICU. We launched into care-taking and the emotional toll of everything was drawn out over a five-year period. We still grieve that loss, but we eventually got to a point when we were ready to try having children again.

No one can tell you how long to grieve or which emotions you should feel when, but there are numerous handbooks (and professional counselors) that can help you identify the different stages common among all humans experiencing some sort of loss – whether it be death, divorce or the loss of having a normal child. It’s a process that you need to identify and cope with, and there are many resources to leverage and it’s something you need not go through alone, or only with your spouse.

Fourth, even though your situation is unique, you are not alone so don’t act like it you are facing this challenge without resources. By resources, I don’t mean social workers or medical professionals, I mean other parents. It took all of the energy in the world for my wife and me to start going to special needs support groups, which were made available to us through education system, the health department and the medical community.

I remember when our child was just a year old and we attended a group comprising nothing but single and divorced special need parents. We quickly decided that was not the right group for us, but found others and attended them as much as we could. At first, we felt quite alienated. After a while, however, we began to make connections and nearly eight years later we still have many of those original connections to some really great special needs parents.

Each parent is very unique in their situation and their children are all different than ours are. However, we’ve been able to vent over the same issues, connect over the same obstacles and constantly share and improve the existing resources available to our children – a priceless boost that has not only helped us feel part of a larger society but also helped us have a social life (whatever that looks like for parents like us).

Fifth, as with anything in life, I’ve found that identifying what I was good at, what my wife was good at and playing on those would help us be a great team. The sooner I realized that I would never administer drugs exactly as my wife does (not changing doses of course) or changing diapers in the same orderly fashion, that’s ok. I do what fits my thinking and she does what fits hers.

We also know that we have weaknesses in this great journey of parenting, too. I can more easily separate my emotions from doctors and specialists to advocate, ask questions and apply pressure when we think something needs to change with the care of our daughters. However, I’m extremely emotional about many other things, as is my wife, and we’ve learned to identify those and come to terms with these subtle differences in our personalities.

We work together to share these emotions when the time is right. We also have been able to find the people in our lives that complement us with the strengths we don’t have. Primarily, we surround ourselves with as many positive people as we can, and shed ourselves from the people are who are not. It’s tough to do but the long-term benefits support our family needs.

We’ve learned a great deal from nurses during our stays in the hospital. At the same time, we never stop educating them. We’ve also learned a great deal from other parents about what’s available to us and constantly try to find ways to improve the mental, physical and sociological health of our parenting and our children.

While I’m sure you can think more lessons learned as a special needs parent than what I’ve listed above (which I could probably do as well), my hope is that this post will get you thinking about the valuable lessons you’ve learned and how you might share them with other parents like us. Just like our children, we have much to share with the world. The more we give, as our children give to us, the more likelihood we can create better understanding for our families and children - not to mention that the learning process never stops, just like our will to give our children the best lives possible.

Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog: http://thegortfamily.blogspot.com

Bringing Giddy to Researchers Everywhere

In 2003 we started working with a doctor who specializes in the kidney disease our kids had been diagnosed with 2 years earlier. Our case peaked her interest when I met her a year prior at a conference. I approached her trying to peak her interest by saying, “Do you know any siblings that both have ARPPKD (autosomal recessive polycystic kidney disease) and a vision disorder called occularmotor apraxia?” With that began one of the most important doctor relationships we have and will ever have in the course of my kids’ treatment.

This doctor, a clinician and researcher, immediately wanted our family’s blood for DNA sequencing. She suspected that because our kids have two different conditions they had a syndrome she’d never heard of and was quickly off to go research. Not finding another documented case of the “syndrome” she sent our blood here and there. Researchers across the country started referring to us as the “Special Atlanta Family” as they tried to answer the question she was seeking: What is wrong with these kids?

Early in our journey we were very anxious to put a name on their overall disorder. I’d do internet searches, join forums for disorders of the eyes and kidneys and reach out to doctors footnoted on research papers. Our doctor put an end to that by simply telling me that having a name for what they had wouldn’t change anything about the treatment we were providing. Their disease/condition would run its course and we’d deal with the symptoms as they came.

That didn’t mean that she wanted to stop searching for answers. We enrolled in a study at the NIH and spent a week in Bethesda, Maryland going through a myriad of tests including scans, labs, 24 hour urine collection (twice times 2 kids!), IQ testing, optometry and interviews. I spent a month copying files, pulling together CDs of scans and getting copies of x-rays together before our visit which spoke to our life over the previous 6 years.

We learned 18 months ago that our kids and one other child have the same mutated gene, for a yet to be named (and never documented) syndrome. Three kids in the world. The researchers called us with the news, asked for permission to publish the results and thanked us for our participation in the study which gives them new information about cystic kidney diseases in children – a rarity apparently.

They were downright excited when they explained that these results could potentially link other childhood cystic kidney diseases together, an often long thought of theory. The discovery of our kids’ gene mutation could provide them the missing link. Our kids – who love to collect bugs, rearrange furniture, paint and swim – could provide researchers with an important medical discovery.

I don’t hold anything against researchers that show their excitement and I’m glad our kids’ suffering could lead to more information being available to the next family that faces their unique syndrome. I’ve told our brilliant doctor the discovery just confirmed what I always knew – my kids are the most unique, special kids I know, mutant genes and all.

Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special Needs.com. She writes for PKD Progress Magazine, Parenting Children with Special Needs Magazine, She Posts and serves on the Board of the PKD Foundation and the Parent Advisory Council for Children's Healthcare of Atlanta.



Inclusion vs. special schools: the choice

The year before I had my son, I read an amazing article in the New York Times Magazine about a father who fought long and hard to get his little boy, who has cerebral palsy, integrated into a regular public school class. “The Lessons of Classroom 506”  was incredibly moving and inspirational. Thomas’s father, Richard Ellenson, had done battle with a byzantine system, and won.

The following year, I had a baby who had a stroke at birth; it lead to cerebral palsy.

As Max went through Early Intervention, I always had that article in the back of my mind. But when it came time for him to enter school, and we met with the evaluation team in our district, it became very clear: Our local school could not accommodate Max. He had too many therapies, too many challenges.

I thought about fighting the system, but then I decided it really was the best thing for Max would be to get the intensive therapy he needed early on in life.

That was four years ago. These days, Max is in a fantastic school for kids with special powers (my hotly-debated new term for special needs that I’m trying to use whenever possible). He’s thriving there. The teachers know just how to teach him. The physical therapist has been the major reason Max learned to walk up and down stairs. The speech therapist helped us get an iPad and Proloquo2Go speech app to trial, and she bends over backward to help find good spoons and cups that’ll encourage Max to eat and drink independently.  

It’s all good—and yet, I keep wondering about getting Max into the school in our district. The questions in my mind are endless: How could Max benefit if he were around kids who could speak fluently and play with him in ways his classmates can’t? Would the therapists be as good? Would it be too disruptive for his schedule to be pulled out of class so constantly for therapy? What kind of aide would he have—especially now that our district had to lay off dozens of them and hire temps? Wouldn’t it be good for Max’s future real-world life to be an actual part of the real world, as opposed to the specialized and rarified one of his school? Am I fooling myself—maybe he’ll never be part of the real world?

The next step, obviously, is to contact the district coordinator. But I would love to hear your thoughts and experiences. 

Ellen blogs daily at Love That Max

Beauty: It's ours to choose

 

 

A part of me was terrified. Was I about to see something now, 14 years after my son’s birth, which I hadn’t seen then?

I’d contacted the genetics clinic at the children’s hospital to ask for a copy of photos that were taken when he was four days old.

That day back in 1994 had been our own little 'D-day' – D for diagnosis. We’d brought Ben to the clinic to see if they could match his unusual facial features with a syndrome. An hour after Ben was born, the hospital pediatrician arrived, unswaddled him and looked at him disapprovingly: "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip,” he said. These were soft signs for mental retardation, he added, though he didn't know what he was dealing with.

Four days later, the geneticist told us she thought he had a greater than 50 per cent chance of having a genetic condition associated with “abnormal facies.” In addition to having blood drawn for chromosome testing, she wanted the hospital photographer to take pictures she could show her colleagues to help them identify other newborns “like Ben.”

We trudged through the huge hospital, melting in our heavy winter coats, passing Ben back and forth in his car seat. They’d given us a paper with a room number on it, but we couldn’t find the room. We got lost in a labyrinth of white corridors with stark fluorescent lights that made my eyes water. Step – pain. Step – pain. My seat throbbed with the raw tears of childbirth and my chest ached with unexpressed milk. I felt dizzy.

I saw an old rotary phone in an empty office and left a quaking voice mail for my therapist: "Hi Jan, it's Louise Kinross calling. Ben was born and they think he has a greater than 50 per cent chance of having a chromosome problem. D'Arcy and I are really struggling and I was hoping you might be able to help us."

We eventually made it to the studio and the photographer was as nice as could be expected.

But I hated the hospital for taking Ben’s photos – face on, side views and shots of his feet, which were apparently extra wrinkly. It felt intrusive, stigmatizing and unnecessary.

And 14 years later it bothered me that the hospital still held these photos and I didn’t.

So I called the genetics counselor and asked for copies.

When I finally had the CD in my hands, I was afraid to pop it in the computer and pull the images up on the screen.

When he was still a newborn, my boy had grown beautiful before my very eyes. His differences dissolved in my sight because I saw his face and being as a whole.

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."

Would I only see the clinical defects in the hospital’s photos?

I clicked on the first one (above) and my heart flooded with joy. What I saw was my beautiful, lovable boy, his four-day old eyes gazing right at the camera, his chubby arms, his round, full face. His right ear was cupped, yes – and I recognized the other anomalies – but it wasn’t scary. I saw the spirit and light in his eyes and it drilled a hole of tenderness in my heart, like it had so many times before.

Beauty, I believe, is something we choose to see.

Louise Kinross is editor of BLOOM, a magazine and blog on parenting kids with disabilities produced by Holland Bloorview Kids Rehabilitation Hospital in Toronto.

Do Not Disturb

I really had no idea how my life was going to be turned upside down when I adopted a child with significant disabilities. I thought I did, but I was wrong.

When I first brought Ashley home, my only parenting experience had come from raising my birth son as a single parent for 5 years. And, he was a pretty easy child to raise. He had some medical issues, but absolutely nothing to compare to Ashley’s medical issues. And, he was typically developing, if not advanced. My interactions with school were typical – my interactions with medical folks were typical – my battles with insurance were few – and my life was my own. All that changed the day I brought Ashley home.

As parents of a child with significant disabilities, our lives become very open books. Doctors and nurses ask very personal questions, and they ask them over and over again. School systems demand answers and test results and access to medical records. Even our friends, at least those brazen enough, ask very personal questions about our children and about our feelings and belief systems. We usually expect those things to some degree. What isn’t usually expected, or known in the beginning, is how we will lose all semblance of privacy in our own homes.

Almost all of us of who have children with significant issues will have to have in-home help at some point. That help may come in the form of nurses and/or personal care aides, and along with those people come the managers – the service facilitators who must visit periodically to ‘check up’ on things. And since all those service providers are seldom paid what they are worth, there is a lot of turnover. And that turnover means there is a constant stream of strangers into our homes.

These strangers hear our phone answering machine messages; they know when we leave dirty dishes in the sink; they hear us yell at our other children; they put away medical supplies and in the process, see that our closets and drawers are not always neat; while working in our kitchens, they see the beer in the refrigerator or the vodka in the cabinet; they know if we haven’t folded the laundry in the dryer, and in an effort to help, they fold not just our child’s clothes, but our clothes also. Just for the record, I don’t want other people folding my underwear.

They know what kind of books and magazines we read. They know the types of movies we rent. They know our tastes in food, and may even inadvertently uncover the hidden stash of candy. They may accept packages delivered for us, and in an attempt to be helpful, may open them and view the contents. They may bring our mail into the house, seeing just how many and what types of bills we receive.

In short, they are privy to almost every single aspect of our lives – not just the life of our child they are hired to assist. And I wonder, does it have to be this way? Do we have to give up our privacy just for our children to receive the services they need? Am I out in left field here, or do others have similar concerns? I would love to hear your thoughts.

Ahh Day Holiday Campaign

Who doesn’t love that holiday feeling?  You know that special feeling you have deep inside when your favorite holiday comes around.  The anticipation, the glow, the joy, the eventual let-down when it’s over…they are all part of the holidays.  The way that memories of your favorite holiday can stay with you long after the actual day has passed.  I guess I’m just feeling a little melancholy since one of my favorite holidays passed just a couple weeks ago.  No, not Labor Day.  The holiday I’m referring to is “Ahh Day.”  What?!?!  You aren’t familiar with Ahh Day?  Really?  Oh, I bet you refer to it as it’s officially recognized and acceptable title—The First Day of School.  I like to refer to it as “Ahh Day” since it was the first time I had a morning of peace in months.  I was able to have two leave early in the morning.  (My husband teaches and my oldest rides in with him.)  My youngest left an hour later.  So, I was able to have 3 gone by 8:15.  That’s when I quietly closed the front door and reverently responded, “Ahh!” 

Yes, there was the usual chaos that precedes a holiday—the running around for this or that.  The last minute packing and wrapping, labeling all those new folders like voids waiting to be filled with overwhelming school assignments, and looking for that right colored paper clip for the communication journal for the youngest one.  There was the usual fight to get kids asleep who are anxiously anticipating the next day.  (Of course, it isn’t the same anticipation as before say, Christmas.)  The last minute checking—did I remember to notify everyone on my list?  The decorating the hall—with backpacks and school supplies tucked inside.  The breathless anticipation of capturing the magic of waiting for the bus (or for Dad to get to the car) with my camera.  Stuffing mouths with that magically delicious frozen waffle all warm and toasty from the toaster with care.  There was even the special holiday drink—high octane caffeine laden espresso mix coffee so I could maintain my holiday spirit.  It’s just a magic day.

Now, I know what you are saying as you are reading this.  Some of you just laughed out loud.  Some of you scoffed.  Some of you vehemently disagreed with me.  Some of you actually snorted out loud.  (Go ahead, admit it.)  And I will readily acknowledge that for most of us, the day actually holds equal amounts of dread and worry.  Will they be ok?  Will they have someone be nice to them?  Will my little one throw a fit that will rival a nuclear meltdown?  Will my oldest make it through the day without a locker mishap?  Will the day go the way I hope it should?  Will all the plans made in those long CSE meetings be adequately followed?  However, if we are honest with ourselves, deep down inside, we relish those first few moments of quiet.  For me, it’s a chance to celebrate the fact that I made it through yet another summer without losing my mind.  It’s a chance to take stock over a HOT cup of coffee.  A chance to make myself an indulgent breakfast and eat it while it’s still warm without interruption.  Event the pets knew to remain quiet…the dog going through his own mini depression.

So, join my campaign to get “Ahh Day” recognized as a special holiday for parents.  Yes, the date is different across the nation and each person may choose to celebrate it differently.  However, it is our chance to share in the typical moment.  It’s an all too brief chance to grasp at the possibilities of the beginning of the year before the realities of struggles and differences steal that hope and force us to return to Parent Advocate mode.  Sure, Hallmark doesn’t recognize it now and will probably exploit the card sending potential as soon as I release this post…but don’t parents deserve another “mini” holiday?  Join the campaign!  Remember to embrace the tiny “Ahh” moments and keep the magic of that moment in your heart.  And be sure to start planning how to celebrate next year.           

Transitions, Part II

Much like Evel Knieval, G and I took a chance leaving our pre-school and going off into the wild, blue yonder of summertime, sans babysitter.  Ramping up, we went off for a two-week visit to New York.  It was good fun and great to see family.  But on the second to last day, I received a call to come back to full-time employment.  It’s been 10 months since Js death and it struck me that it was probably time and I should take advantage of the opportunity.

So on that day, I had to find another babysitter, as ours wasn’t meant to return from an Air Force reservist training camp for 5 weeks.  The day the babysitter started is another day I had to leave G with someone I didn’t know well during a period of upheaval and me back behind a desk working on a television show full of madness.

But believe it or not, it’s a month down the line and we're all still here and sane.  We made it through that first frightful day.  And before we knew it, by the very next week, G started school.  He loves it.  We wait for the school bus early in the morning.  When he pops on, I head to work.  When he pops off, he sees his new babysitter and goes to therapy or on some adventure.  They both love the same museums.  She calls him "honey", so he calls her "honey" right back.

Last week, I got calls for more work and much like the past decade, I’ll be back on the road.  We’re keeping the new babysitter, sadly missing the one that helped us so much after Js death.  The new babysitter will be able to do overnights – even though G and I will miss each other dearly, I know he’s in safe hands.

New job, new school, new babysitter and even new therapies are at hand.  And I can tell you, I’m so proud of G for running through all the hoops.  Lord knows that boy still can’t really put a sentence together – by next blog he’ll be turning 7 – but his fantastic nature and desire to learn are making him into the unique individual he’ll grow up to be.  I’m hoping he’ll not be as risk taking as Evel Knieval, but I have no doubt G will brighten up the world.

Connecting the Two

I just wanted to say thank you to Christina and everyone here for the warm welcome I've received as a contributor on the site. To say I'm honored and humbled to be here is an understatement.

When we asked Christina if we could focus a week on Hopeful Parents at Support for Special Needs she enthusiastically agreed and we had a moment I remember well. We talked about building a bigger community for all of us to draw from and this was another way to connect. I know all of you know this - connection is the key - and it's an idea we shared that day on the phone.

So we are thrilled to have Hopeful Parents on our site and we are thrilled to be here, among "family."

Our site offers a place for parents and caregivers and special needs resources to connect. In addition to our own community news, news worthy items for special needs, member blogger feeds, and profiles on groups and authors, and personal essays, all relating to our world of special needs parenting.

So we welcome you and thank so many of you for already becoming community members.

 

 

On Being Called "Mom"

I loved being called Mommy when my boys were small, and my non-verbal daughter Sophie, now fifteen years old, vocalized mmmmmmm a few times in her life where it appeared she was referring to me. My boys, now twelve and nine years old, call me Mom, most days, and sometimes they refer to me as mean mom when I refuse to get them something at Target or deny them three daily desserts.

I remember the first time I was referred to as Mom when my daughter was diagnosed with infantile spasms. She was three months old, and I was a first-time mother. It felt surreal to be a mother and almost sweet to be called Mom by nurses and doctors who traipsed into and out of the room. It was more shocking to be a mother in a hospital, practicing how to give ACTH (steroid) shots to an orange so that I'd feel more comfortable injecting my baby in the tiny muscle of her thigh when we got home. 

Over the years, I have variously been referred to as Mom in IEP meetings and at doctors' offices, and I have to say that it always makes my skin crawl. I find it undignified, in a way, a word that doesn't exactly conjure the same respect as Mother, for example, or goddess. I want my children to call me mom, and I even don't mind being referred to as Sophie's mom or Henry's mom or Oliver's mother. As much as I respect and relish the role of mom, I do believe that the mom in our current culture is The Mom -- the harried chauffeur, the one who is schlepping the children around, the one who drives a minivan and volunteers.  I am definitely The Mom, in that respect, and happy to be one, but I have to say that when I'm negotiating with a doctor over my daughter's healthcare needs, or fighting an insurance company or discussing my daughter's education in an IEP meeting, calling me Mom as in Mom has some concerns about such and such or Mom, how are we doing today? -- well, I'm going to bristle. The word is more of an endearment, to me, than an address. If we're going to continue down this much-welcomed path of patient-centered care where parents are equal partners in the care of their child, particularly those with special healthcare needs, we need to address one another by our names. 

Mom, what can I do for you today? the principal of my daughter's new school says.

Please don't call me Mom,  I'll say. My name is Elizabeth.  Please call me Elizabeth.

 

Elizabeth, the mom, the mother and the goddess posts regularly at her personal blog.

If He's OK, Who Am I?

When I was pregnant with my youngest son, Carter, in 2002, I had dozens of dreams in which I birthed a tiny but perfectly healthy baby. In the dream, he weighed maybe two pounds. I birthed him, tucked him into a sling, and resumed my day. My midwife posited that the dream meant I expected the baby wouldn't change my life that much. I assumed she was correct. Carter was our fourth child; babies always change things, but really, 3 kids to 4 is only a change of 25%.

And then he was born. We now know that he probably suffered a perinatal stroke (though we'll never know for sure) and has mild health and motor issues, moderate cognitive problems, and is seriously mentally ill.

So much for the baby who wouldn't change my life much!

Of the past eight years, I'd estimate that 5 1/2 - 6 of them have been wildly difficult, and starting in the spring of 2009, we discovered what we were really dealing with. Not some issues he might outgrow; not a few difficulties that would require extra care; but a serious, disabling, and potentially fatal mental illness.

Like being hit in the stomach repeatedly with a sledgehammer, the summer of 2009 was. As I dove deeper with Carter into the reality of the illness; as he raged and expressed the desire to die, then tried to jump out of the car while we were on the freeway, and finally, developed psychotic symptoms, I felt my own anguish, but mostly? I kept going. I drove Carter to OT, therapy, and psychiatry appointments. I learned restraint holds and did battle with the public school that couldn't meet his needs. I fought with the insurance company and tried to keep my other kids emotionally afloat in the midst of the chaos.

In the past few months, something magic has happened: stability. Somehow, his therapies and his medicines, his new school environment and (maybe?) plain old maturity have conspired to gift us with this quiet. Calm. It's not what any family unaffected by mental illness or developmental delay would call "calm," but for us, the quiet is a gift of the universe.

The quiet is also deafening.

Not that I'm ungrateful; not for one red-hot minute would I change any of this, but I am struggling to come back to myself. Over the past eight years, I have devoted more emotional energy to Carter than I even knew I had. I stopped working (long days that included before-and-after school care were far more than Carter could tolerate); my husband's and my social life had dwindled to almost nothing; and when we go to church now, we feel like visitors, not members of many years. Without Carter's need for constant care, and without the things that filled my life before Carter was born, there is a vacancy.

I am flailing right now, trying to find new ways to organize my life and my time. After I drop Carter off at school in the morning, I look into the six hours that I need to fill, and I'm not exactly sure how. There's no shortage of things to do. The house and yards are in dire need of attention; my grandma craves my company; I want to write a book. No, it isn't a lack of things to do. It's a lack of decision-making ability.

A crisis makes the decisions. When Carter was acutely ill, I didn't have to make decisions about how to use my time. I took care of him; arranged his medical care; fought with the school to meet his needs. I stayed close to home in case the school called (as they so often did) because Carter was falling apart. I didn't make commitments because I feared I'd have to cancel.

Since spring 2009, I've done almost nothing except work toward getting Carter stable. I assumed (foolishly, I now know) that I would pick up my own life when he was OK again. I feel a little panicked that it isn't working that way because really, I have no idea how long this will last. Perhaps things will be quiet until puberty; maybe it will all fall apart by Christmas. There's no way to know how much time I have, and I want to use the time to its fullest. Unfortunately, humans don't work like that. We're not machines; we require rest, and readjustment periods, and time.

This flailing, this frustration and confusion and struggle? I don't like it, but it might just be my favorite problem of all time. Yesterday, Carter said to me, "You know Mom, I have a pretty good life."

My frustration is real, but on balance it's not so bad in light of that. I hate when people discuss how difficult any aspect of parenting is and finish up by saying, "But it's all worth it!" In this case, though, I can't avoid it. This is a pretty great problem.

Adrienne writes regularly at her personal blog here.

Support for Special Needs

Have you heard of Support for Special Needs? It's a free social networking site for special needs families. Founded by Julia Roberts (who also happens to write for Hopeful Parents) and Dawn Friedman, Support for Special Needs shares news stories, information, resources, and personal connections for families like ours.

Each week, Support for Special Needs creates awareness for a different cause or organization...and this week, it's Hopeful Parents!

I hope you'll consider stopping by every day this week -- on Monday, there'll be an interview with yours truly, and for the four days following, Support for Special Needs will profile four of our writers (chosen at random). It couldn't be any easier...just click on the link below!

The Boy and the Vacuum Cleaner

Once upon a time there was a little boy who had autism. He did not start talking until he was five years old, and he often screamed and butted his head into people and walls to indicate his frustration. He also had agonizing sensory issues that made it impossible for him to filter loud noises, and he would scream and bolt whenever someone turned on a mechanical device in his presence. He would be disturbed by leaf blowers more than a block away, and the vacuum cleaner in the house was such an assault on his hearing that he would fly into a panic if anyone so much as walked in front of the closet in which it was kept. His parents would try to “sweep” the carpet as often as possible to avoid using the vacuum cleaner. When they absolutely needed to use it, one parent would take the little boy outside and comfort him while the other parent vacuumed.

After some time, the little boy’s parents divorced, and the mother would vacuum whenever he was visiting his father’s house. This went on for a few years, and then the father moved farther away, and the little boy could not visit him weekly. By this time the little boy had started learning to talk, and when it was time to vacuum, the mother would take him to his bedroom, show him how to cover his ears with a pillow, and shut his door while she quickly vacuumed.

It went on like that for several years. The mother would always notify her son before she would turn on the vacuum cleaner (as well as the blender, the food processor, and any other mechanical device in their home). The boy’s sensitive hearing still kept him most anxious about the vacuuming, and as his verbal skills increased, he would head to his room and admonish his mother, “Don’t start until my door is shut!” and call out “Is it over?” when the vacuum cleaner had stopped. By the time he was a teenager, the boy told his mother, “That vacuum is like shrieking banshees in my ear.” She thought it would always be that way, and sadly she wondered what other sounds in the world still tormented her son. He had gotten to a point where he could go to a movie theater if he wore ear plugs, but the vacuum cleaner still plagued him.

Then one day, after being in a series of situations involving loud noises and noting that her son was affected by them far less than he used to be, the mother decided to try something. She approached her son and mentioned that it seemed that his hearing wasn’t as sensitive as it used to be, and he said, matter-of-factly, “Well, I’ve just learned to deal with it.” She pointed out that he could now mow the lawn while wearing ear plugs, and she asked if he would be willing to try that with vacuuming.  “Okay,” he said in his typically flat voice.

The mother gave him a brief tutorial on the vacuum cleaner, and, armed with his trusty ear plugs, the boy began to vacuum his bedroom while the mother went to work on something in another room. Amazed that he agreed to do it in the first place, she figured that he would do a quick job and shut the vacuum cleaner off as soon as possible. So when four minutes had gone by and the vacuum cleaner was still running in his room, she went back to check on things. She discovered that her son had put an attachment on the vacuum nozzle and was methodically detailing the corners of his room. She stood there, marveling at this unexpected turn of events. And then, with the ear plugs still firmly planted in his ears, her son looked up at her and smiled. The shrieking banshees no longer consumed him.

After the mother picked herself up off the floor, she praised him for taking the initiative and doing the extra work in the corners. She asked him how it went for him – vacuuming! – and he said in his flat but beautiful voice, “It was fine.” And even though it was a small thing, inconsequential in the grand scheme of things, the mother crossed “vacuum” off her mental list of things that her son, now almost sixteen, would “never” do and reminded herself that anything is possible. Anything.

The End.

                             Tanya writes TeenAutism.

Living With A Gift

For me, living with a child who has a life-limiting diagnosis is in some ways an exercise in denial.  We have been given a prognosis of his life ending when he's somewhere between five and fifteen years old.  Currently he's four and a half.

There are no prior case studies or research the doctors have pulled this number from because there are no previously recorded cases of a child with Connor's genetic condition.  However, his specific combination of birth defects affect every system of his body except for his lungs.  His heart defect can cause strokes (he's already had one), congestive heart failure or sudden cardiac death.  He doesn't sweat-- we're not even sure he has sweat glands-- and so is at risk for heat exhaustion any time the outdoor temperature climbs over about 80 degrees. 

He has seizures that begin in his brainstem and cause him to stop breathing; we've now resuscitated him over 60 times in the past two years.  His seizures also put him at risk for aspiration pneumonia.  He has only one kidney.  He has no protective reflexes to slow or break a fall.  As a result Connor's doctor's records usually read either "prognosis guarded" or "prognosis poor," depending on how optimistic that particular doctor is feeling the day of our appointment.

Connor's already beaten the odds.  When I was pregnant with him we were told there was a high chance he would be stillborn.  He was born limp and blue, but with a heartbeat.  Then we were told there was a 90-95% chance he would not make it through his first surgery at four days old-- to remove a kidney swollen to a size larger than his lungs.  He breezed through the six hours under anesthesia with no trouble. 

After that we were told there was a good chance he wouldn't make it through his second surgery at a month old, to correct his twisted intestines.  Then that he wouldn't make it to a year.  And now we are just about to cross the threshold of the ten year period that has been outlined as the next time he's most likely to leave us.  You can understand if we take this whole prediction thing a little more lightly than we should-- after all, the doctors have been wrong four times before.  And our little guy is so full of life, so joyful every day, that it's nearly impossible to think about him being gone.

Truthfully we know that it is extremely likely we will outlive our son.  My husband Jeremy and I have spoken a little about funeral arrangements and about under what circumstances we would sign a DNR order for Connor.  But for the most part we've made a conscious decision not to think about it.  We've decided that if we have a limited time with our precious son here on this earth we'd rather spend it celebrating each day he's with us.  We're going to have more than enough time to mourn him once he's gone.  Naive and overly optimistic?  Maybe. 

But it keeps us functioning and focused on what means the most to us right now-- giving Connor every opportunity to have a happy and satisfied life, no matter how long that life might be.  And I think watching the way our son interacts with the world around him, his matter-of-fact acceptance of his physical limitations and the way he finds happiness in the smallest things, has affected our whole philosophy about life.  Isn't love, happiness and satisfaction what we all need, no matter how long or short our lives are?  What's the point of living ninety years if we're going to spend them miserable? 

While we can't predict the future any better than the doctors can, Connor is probably not going to have a slow decline before he passes on.  Most of the risks he lives with involve him leaving us very suddenly.  In some ways I'm glad that's the way he's most likely to go: quickly and painlessly without knowledge of what's happening to him.  Because I know that we're not likely to have any warning-- that each day could literally be our last day with him-- it makes me think of every single one as a gift. 

We can't change the reality of our son's lifespan, no matter how much we'd like to.  But instead of dwelling on it, we can take the time now to learn as much as we can from the lessons he teaches.  Connor treats every second he's here as a chance to seek out joy.  I think that's a pretty wonderful way to live.

~Jess

 

Jess writes daily about her family over at her blog, Connor's Song.

Two Reasons to be Hopeful

This week did not begin well.  Just when I'm feeling exhausted by all I have to do for Pudding, and feeling guilty for all I can't do for her, we receive the news that Cubby is also developmentally delayed.  That same day Cubby cut his finger pretty badly and I had to spend the afternoon at the ER.  When the doctor told me to keep Pudding occupied while they stitched him up, I felt overwhelmed by this feeling of resentment that I couldn't be with my child when he needed me, because there is no way the other would let me.  I realized that this was the first of many times I will experience this tug-of-need between the two.  I was a long way from being a Hopeful Parent at the start of this week, I even contemplated asking somebody else to fill my spot.

Fortunately the week got better.  Once again we were reminded that we aren't alone in this, not even close.  And we learned once again that distance is no barrier for love and support. 

Over the last year since Pudding's diagnosis, she has made wonderful progress in certain areas, but she continues to have difficulties with self-regulation, motor-planning, and her fine and gross motor skills remain pretty much the same as when we began occupational therapy.  Any efforts we make to work on these skills are greeted with almost instant meltdown, then shut down. 

I was upstairs getting Cubby dressed when I heard the music from the computer downstairs.  She can use the mouse to click into iTunes, but needs help in picking her favorite songs.  She only cares to hear her favorite songs, and demands that any other be skipped.  The music carried upstairs:

You put your right hand in, you put your right hand out...

Oh no, "The Hokey Pokey".  I've tried countless times to persuade her to join me dancing to it, and "Heads, Shoulders, Knees & Toes" and anything else that requires coordinated movement.  Occasionally she will sing along with no attempts at dancing, but generally she is altogether dismissive.  I quickly finish the buttons on Cubby's shirt to go and help her change the song to one she likes.  The school bus will be here in 10 minutes, and I need her to be in a cooperative mood.  I start down the stairs:

You put your left leg in, you put your left leg out...

I freeze.  Her leg is outstretched, and pulled back in.  She almost falls over with the effort of coordinating her unwilling body, but she brings her own grace to the song.  I stay on the stairs, I daren't make a sound.  I watch her turn herself around.

You put your right leg in, you put your right leg out....

I'm spellbound.  When did she learn her left from her right?!?  Was she watching me all the time I used to show her?  Was she always paying attention, memorizing the sequence so she could get it right?  All to soon it is over.  One last hokey-pokey, she turns herself around, and her eyes meet mine.  I don't know what to do.  Do I applaud?  Join in?  Say "well done"?  I make some obscure gestures that are a mix of all of those, but it is too late.  The reluctant performer has ended the show, and calls for another song.

It has been a really hard week.  It is going to be hard for a while.  But if my girl can keep on trying, so can I.  Maybe one day we'll both be satisfied with our efforts.  I play "If You're Happy and You Know It" and watch as Pudding and Cubby clap and stomp their feet to the song.  I sing along with my two reasons to be hopeful.

Spectrummy Mummy is striving to be hopeful most days at her blog: http://spectrummymummy.wordpress.com

You can also find me on Facebook and Twitter (but that makes me despair!).

Can't We All Just Get Along?

One of my recent blogs, What I Believe and What I Know, was featured on the Autism Speaks blog, In Their Own Words. I began my essay with a short description of all the activities that Jacob and I used to enjoy when he was young. My goal was to stress that sharing quality family time together is beneficial for both parents and children. My essay went on to explain my thoughts about having a child with a disability and how I’ve come to understand the many ways in which Jacob's disability has given me the wisdom to see beyond it.

Autism Speaks also features the blog on their Facebook page; for my essay, over 500 people hit the "like" button and almost 100 people posted positive reveiws in the comments section on both Facebook and In Their Own Words. “Thank you for sharing”, “”I really connected to your words”, “This is a wonderful testimony”, and “Beautifully described” were just a few. Everyone loved my essay, everyone that is except for one reader named Andy. He wrote, and I'm quoting his words exactly, “I think this post is insensitive. Trips to Europe, museum visits all over the world, actual conversations with your child. So few families are that fortunate.”

Wow, I thought. That was not my intension. Of course, my first impression was that Andy must be on the spectrum; why else would he respond so negatively when over 90 comments were so positive. The Centers for Disease Control estimates an Autistic Spectrum Disorder for boys is 1 in 90, so I figured that 1 negative comment out of nearly 100 positive ones was proportional to the incident of Autism in the general public. But I as further contemplated Andy’s words, I thought that was a more serious issue within the Autism community.

As any parent of a child with Autism knows, individuals on the spectrum present their disability in very different ways. On one end, there are children that are severely affected, unable to communicate and many times having co-concurring conditions which leave them highly impacted.  Individuals on the other end are labeled as having Asperberger's Syndrome or high functioning Autism. As young children, they look much like their typical peers.  They may do well academically, but put that same child on the playground where he has to interact with his neurotypical peers, and he's lost. He doesn’t understand social cues. He may not be able to read facial expressions. He's the child wandering around on the playground by himself with no friends. Hopefully, with intervention, the child will acquire socially appropriate behaviors.  Unfortunately, even with these interventions, a large majority do not transition successfully into their communities after they exit high school or college. This is true across the spectrum, no matter what their diagnosis, their level of functioning, the type or the amount of hours of services they've received. As young adults, the majority lack meaningful employment or close friends or personal relationships. And a very small number, as little at 5% or less in some studies, live independently.

I know firsthand the obstacles of raising a child with a disability. I know how frustrating it was when Jacob had a difficult time in the classroom. I remember how rigid his behavior could be. I was lucky he liked to hug and snuggle. I can recall how great it felt when Jacob had a great day at school. I also remember the sweet child that he was and still is, though it is now masked as that strange creature called a teenage boy. But do I feel superior because Jacob is less impacted than another child with Autism? Am I happier that Jacob can speak because another child with the same disorder is non-verbal? Of course not. If anything, I feel great empathy for those parents that are enduring more difficulties than I faced.  I completely sympathize with how tough it can be for the entire family when one member has Autism.

I saw this same sentiment expressed in a recent post on that same Autism Speaks Blog. The essay was written by an individual with Asperger's Syndrome in response to the way the American Psychological Association (or APA) is proposing to diagnose Autism in the next addition of the Dianognostic Manual of Mental Disorders (or DMS). For those of you unfamiliar, the DMS the book used by professionals to diagnose psychological disorders. In the current edition of the DMS IV, Autism diagnoses are now separated into several subcategories one of which is Asperger’s. In the proposed draft of the DMS V, which is slated to be published in 2013, the APA will be lumping all of the subcategories into one diagnosis which will be Autism Spectrum Disorder. In other words, all Aspies will no longer have Asperger’s Syndrome; they will have Autism.

As an Aspie, the writer was very opposed to this change.  According to her, “it will serve as a mockery to those who are severely affect by Aspergers, and it will attack the identity in which many Aspies take pride.” She went on to say that the Asperger’s label gives an impression of intelligence and ability and that people with Asperger’s are brilliantly gifted and capable individuals whereas people with Autism are thought of as needing institutionalization and not able to live independently. She added that taking away the Asperger’s diagnosis would dangerously stereotype Aspies and the lack of the label will interfere with their ability to be employed or be promoted in their occupations because they will now be associated as having Autism. She supported her opinion with many more details on how the APA was wrong to take away the Asperger's diagnosis, but I'm sure you get the idea. Maybe I was misinterpreting her comments as Andy has done with mine, but it seemed to me if the author thought of herself as superior because she has Aspergers and not Autism.

In my opinion, it is very sad that that Autism Community is so divided. Acceptance, not segregation, should be the goal for all people regardless of their differences. I know I do not look down upon parents of a child that is more impacted than Jacob. I do not feel superior to parents of non-verbal children because Jacob has the ability to communicate. I don’t think that it is better to have a child with Asperger’s than it is to have a child with Autism. I hope that all parents will be able to remediate the core deficits of their child’s disability. I want all children, because of their abilities and regardless of their disabilities, to ultimately have the chance to live happy, healthy and productive lives. I want every child to succeed as I hope Jacob will be able to do one day.

The grass is always greener on the other side, as the saying goes. Unfortunately, this is not true when you have a child with a disability. The parents of a high-functioning child with an ASD will not have an easier time raising their child than the parent of a child that can't speak and flaps his hands or walks on his tip toes. It is true that a more highly-impacted child will take a much longer time to show progress, but that doesn't mean the parents higher-functioning children will have an easy time raising thier child. No matter what a child's issue, it's an uphill battle every step of the way.  All the parents I know love their children, no matter what issues they may have. I too have faced many challenges with Jacob, but I also feel blessed to him in my life even though at times it was very, very difficult. I don’t regret for one moment what both he and I have experienced. His disability hasn't been something that I wanted in our lives, but he is who he is, and I love him no matter what, always and forever.

Jacob will be 17 in just a few weeks, and I've seen tremendous progress since his initial diagnosis at age 3 1/2. For that I am truly thankful. But would my happiness become source of envy of a parent whose child who hasn't been so successful? I certainly hope not, but, unfortuately, it just might be.

 

Susan's blog, Taking the Awe Out of Autism is her perspective as a Mom with a teenager with an Autism Spectrum Disorder.   http://aweoutofautism.blogspot.com