Work=Life: Raising A Son With Special Needs

I have noticed and remarked upon the fact that lots of Mommies of Special Needs Kiddos work in the field of Special Needs. It is a seamless extension to our lives with our children.  We are pre-occupied with, perseverate upon, these kiddos. For without our constant vigilance, who will advocate for them and make sure our children become their best selves?

Most times I find the connection between my role as Willie's Mom and my professional one, in the Autism Classroom I support, complementary, overlapping, and helpful for both worlds. Until yesterday, when I opened up my email and read Willie's Behavior Support Plan.  Then my acute understanding and implementation of such Behavior Plans sent me reeling. Somehow reading about the antecedent strategies to help Willie stop self-injurious and aggressive behaviors hurt too much yesterday. As I brainstormed these same antecedent strategies for one of my students, reading the same about my Willie was just too stomach turning.

It is still too raw for me to figure it out. I need time to process why I am so provoked. Just when I thought I was "uber" accepting of Willie's limitations, that familiar pain that comes from being smacked in the face by Willies limitations visits me yet again. I know that acknowledging that Willie needs a Behavior Plan at all is tough, as this is his first ever! Not that we haven't had intolerable behaviors at home and at school in the past.  And the ironic part of reading the plan is that these strategies will help him now AND as he transitions to his new community. I should be embracing the Behavior Plan. But I hate it today.

My role as A Special Educator and a Mommy of Willie is challenging today. "Willie Pain" has seeped into my professional life. All the lessons Willie has taught me are still present and crucial as I help others. My empathy for my students' parents is as strong as ever. My intuitive understanding of my students is deep and rich from years of living with Willie. But today I am mostly a hurting Mommy. Tomorrow will be easier, I hope.

Inclusion vs. Segregation?: Raising A Son With Special Needs

From my email this morning I read a succinct and
provocative summary of the issue of whether to educate our children in Inclusion or to keep them Segregated in separate classrooms and schools. Read all about at: http://bloomparentingkidswithdisabilities.blogspot.com/2014/04/two-solitudes.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+Bloom-ParentingKidsWithDisabilities+%28BLOOM+-+Parenting+Kids+With+Disabilities%29.

This is an issue near and dear to my heart as I have argued, pushed, advocated, and fought for both throughout Willie's Education over the past 18 years. I intuitively know that Willie thrived because of both scenarios. He has been in a "Segregated Residential School,"  aka: Most Restrictive Environment, over the past 5 years, and has grown and developed beyond my wildest dreams.  I would never have done it any other way. But back in 3Rd through 7Th grades, Willie was in an Inclusive Classroom in our local community, Least Restrictive Environment, and gained valuable social and educational benefits. 

In the end, I am sure that Inclusion and Segregation are both right for our Special Needs Kids.  What a tough road to navigate as parents. But if we drop the labels: Inclusion, Segregation, Least Restrictive, Most Restrictive, then perhaps we can just maybe find the truth. And like all kids, our kids' truths will continue to change and evolve. Our job is a tough one. 

Willie is Willie Today: Raising A Son With Special Needs

The name of my Blog is Who are you Today? This is because one unique thing about Willie is his rich, make-pretend world, that he sometimes prefers. On any given moment, Willie may have magically morphed into one of his characters: Slash from Guns and Roses, Batman, Darth Maul, The Phantom from The Phantom of The Opera. Each of these characters serve a psychological purpose for Willie, depending on his mood and his latest struggles.

Yesterday we got though 4 hours with no imaginative speak. Willie was just Willie. I sat with him, ate with him, walked with him and just soaked in his "Willieness." He smiled, he spoke about real things, he laughed, he complained,  he was present.  We were not at home. We were not in the Mall or a Restaurant. We were with Willie, in his world, at his School.

It wasn't until later that I realized perhaps there is a correlation between Willie taking on another personality and where he is. In other words, could it just be possible that Willie can remain himself when he is at School?  But when he comes home, or ventures forth from that trusting, safe, adapted environment, he resorts to imagination to cope?  This just may be the case? And if so, how ingenious of Willie to use such coping mechanisms for a world too scary, undependable, and not-designed for his best self.

I will be paying closer attention in the future to see if this theory is correct. The verdict is out. In the meantime, I will enjoy my son, his idiosyncrasies, his imagination, his beauty and profundity. But I much prefer to talk to him than Slash! SSSHHHH, please don't tell him!

The GAPS DIET: Raising A Son With Special Needs

We had Easter Brunch with Willie at his school today.  It was lovely and delicious and one of my favorite days of the year! Even though we are Jewish, the Easter Celebration there, emphasizing birth and nature, speaks to my soul. Sharing song and feast in the communal Dining Room of Willie's school, along with the other students, their families, and other members of the community, is a highlight of being Willie's Mom. The understanding, acceptance, camaraderie, and all that is done right at The Camphill Special School, shone brightly this Easter afternoon.

During Brunch, I sat and chatted with Andreas, Willie's House Father. Part of our conversation focused on the Camphill Special School's obligation to our world at large and the growing Autism Epidemic. Andreas mentioned one study published recently has projected that 1 in 2 children will be born with Autism by 2025. He spoke about The GAPS Diet that the School follows. I knew this Diet could help with some symptoms of Autism but had never considered that it could help prevent Autism.

The GAPS Diet stands for The Gut and Psychology Syndrome, coined by Dr. Natasha Campbell McBride.  Please visit the following website for a more scientific and thorough explanation: www.gaps.me.  In the meantime, I want to share my understanding of the Diet.

When Willie moved to the Transition Program 3 years ago, I knew that his already healthy eating habits changed a bit. He ate more fermented vegetables, introduced us to a fermented beverage called Kombucha, and turned us onto delicious foods made with almond flour. I thought nothing of these changes except that I loved these additions and began to ask for recipes.

I learned then about The GAPS Diet which adheres to a strong connection between ones' digestive system and the brain. In fact, our digestive system is seen as another brain and can help with healing the entire body. The idea is that the symptoms of disability can be decreased by healing the Gut, by what we eat. I know that this dietary program is carefully followed at Willie's school and sense it truly helps each of the students' be their best selves. We have even started following some of the basics of the diet at our home.

It wasn't until today, talking with Andreas, a GAPS Diet Specialist, that I realized that this way of eating could possibly help to prevent the predicted Autism Epidemic. As you can imagine, this way of eating is harshly criticized by the public.  Now that science is discovering that Autism begins in early uterine development, the public must keep an open mind.  The Gaps Diet is one option that must be carefully studied, tested, and considered to prevent this epidemic. With so much still unknown about the development of Autism, why take a chance? Drink up that Kombucha!

GARBAGE: Rasing A Son With Special Needs

I was reluctant to write a blog about our life as I am not one of those parents who is all rosy, cheery, or happy. It just isn't my personality. And although I embrace Willie and learn from him constantly, some days are downright miserable. This post is about some of that sorrow: Willie's GARBAGE!

You can see the big bag of soda cans, pudding containers, candy wrappers, and yogurt containers that I collected after Willie's 2 week visit home. This was all "secretly"stuffed under the computer console. I left it there 8 days after his departure, until I had the heart and strength to collect and dispose of it. This GARBAGE breaks my heart and represents all of Willie's current struggles.

Most 21 year olds are not controlled by their Parents or House Fathers. 21 year olds can come and go as they please. 21 year olds can drink, smoke, and chew whatever they desire. 21 year olds usually go to college or have some sort of job. 21 year olds wear whatever they want. 21 year olds are not put to bed at any certain time.  21 year olds shower when they choose. 21 year olds can be sexually active if they prefer.  21 year olds have a bank account and a debit card and sometimes a credit card.  21 year olds own an IPhone with a twitter account, Facebook, and text like crazy.  21 year olds have friends. 21 year olds are usually mature enough to make important life decisions or at least solve problems that may ensue. 

Willie is 21 but none of the above holds true for him. So he steals soda and food and stows the garbage under the computer, in hopes that he won't be found out. In his frustration and lack of inner control, his GARBAGE becomes his expression of FREEDOM.  His ability to out-smart this controlling system (ME)  that denies endless soda and candy and food is his joy.  This GARBAGE is an on-going event. This time the GARBAGE was heavy and scary and impossible to dispose of. 

For the first time ever, Willie's other GARBAGE included porn on TV, drinking 1-3 beers alone at 11 AM, and staying up till 4 AM on YouTube.  (Drinking can mess up Willie's cocktail of meds. Not sleeping enough can cause a seizure.) The myth that I can control Willie is shattered. His limitations are pronounced and screaming at me. His knowledge that he is not like other 21 year olds is becoming his latest obsession. 

You could say that Willie is again teaching me. His yearning to be an adult is powerful and needs an outlet. I must listen to him. But his immaturity, weak executive functioning skills, his tendency to excess, and some safety concerns, outweigh Willie's voice. So as I process Willie's enlarged GARBAGE, I will continue to hear Willie but know that he needs a container for this GARBAGE.

Willie enriches my life! Some days though, I dread his needs, his demands, his stubbornness, his appetite, his compulsions, his make-pretend world, his limitations. But last night I was plain grateful that he offered me a very special gift. His school was hosting a presentation by Larry Bisonette,  an Artist with Autism as part of their Autism Symposium: Sensitive Systems. I would never have known about this unless Willie had Special Needs and happened to be lucky enough to go to The Camphill Special School.  It was one of those nights I won't ever forget.

The presentation was held in Rainbow Hall at The Camphill Special School. The name alone suggested the magic we were about to experience. Larry sat in the front of the room, with another man, behind a rectangular black table. A small computer in front of Larry, a larger MAC in front of the other man. The room filled up with lots of people, some with disabilities. Larry watched us, stimming with his right pointer finger, making high-pitched guttural sounds.

Then Larry was introduced as well as Pascal, Larry's communication support person. The room was silent. Larry began to slowly and laboriously type on his computer with his right index finger. Pascal pinched the upper sleeve of his shirt, exerting pressure on Larry. Larry's letters showed up on the large screen behind him. The letters formed words and the words sentences. NO punctuation. Four lines of words, funny and poetic. Larry welcomed us to his presentation. The room was silent. All eyes transfixed on Larry and the screen.  Then Larry's computer read the words to us. We laughed. Our hearts melted at his eloquence, his meaning, his inner world so at odds with his outer appearance.

The evening continued with a 20 minute movie about Larry, his life, and his art. There was a slide show where Larry and Pascal would take turns reading. Then Q & A. Throughout it all, the audience was mesmerized, all eyes on Larry, as he shared his story. And for those 90 minutes, Larry continued to stim,  pick his ear and eat what he found, smile a large, lopsided smile, rub his head, repeat certain words over and over again, and make all sorts of noises.

It was an amazing night as most of us had never seen such an outwardly severe man with Autism use Facilitated communication so poignantly. Larry talked about what it feels like to have Autism, what inspired his artwork, what it is most important for Special Needs kids to learn, and what his favorite color to paint with is. Throughout the evening, Larry would throw in subtle but very amusing jokes and continue to speak to us in his poetic prose about all these very important matters.

I cannot rightfully do justice to capturing Larry and his messages. So please check him out at www.larrybisonette.com.

Larry opened my already open eyes to HIS voice and the voices others with disabilities have. My very verbal but disabled son gave me a gift last night. I will spread Larry's messages and then some.  Thank you Larry. Thank you Willie.

FREAK: Raising A Son With Special Needs

The hit television series Parenthood is a staple for parents with children with Special Needs. Max, one of the stars of the show, has Aspergers and does a fine good job of persuading us that he truly is on the Spectrum. Max's struggles and his parents mimic our lives as they portray their real-to-life sorrows, struggles, and victories.

Last week, Max fell apart on a Middle School overnight class trip. We watched as his Mother debated whether or not to chaperone the trip. Max requested she not attend.  Christina and Adam, Max's parents, in the end decided to take a leap of faith and allow Max to go alone. It was a perfect storm.

In the end, Max had to be picked up from the trip early. He inexplicably snapped and had a tantrum that his empathetic teacher could not rescue him from. On the way home, in the car, Max, in uncharacteristic eloquence, spoke about what happened. He told his parents he was a FREAK, as the other kids call him that, treat him like one, and have convinced him that he is one. Christina of course, as all mothers, would not accept this message. In the final scene, as the television viewer, Special Needs parent or not, is wiping their unending tears away, Max told his Mom that he knows he is a FREAK, no matter what she tells him.

And then the hour long episode was over. It left me feeling vulnerable, sad, beaten, hopeless. But luckily Parenthood is just a TV show. In real life Max does not have Aspergers. In real life, I just turned off the TV and moved on.

But then I was driving in the car with Willie the next day. Out of the blue, he said, "I am a FREAK." For a minute I caught my breathe as it didn't seem possible that he was echoing the exact words Max had used in Parenthood the day before. But I, as Christina had before me, told Willie that of course he wasn't  a FREAK. And his next sentence floored me as it was a direct quote from Max. "No, I know I am a FREAK." And I was speechless.

For at that moment, I could not reach Willie. His sense of self included that FREAK word, no matter what I said or did. For he is his own person. He thinks about himself based on his life experiences. And he is smart enough to know how different he is. Like Max, he notices when others laugh at him, stare at him, snicker behind his back. Those experiences shape him. No matter what I say, I cannot deny Willie his feelings, his interactions in the world, his interpretations of himself. Sure I have helped to create a world where Willie can be and is his best self. Sure, I have helped him to feel successful both academically, vocationally, and socially. But in the end, Willie is Willie and I am I. We are separate. And just as Christina could not protect Max, neither can I.