The Last IEP: Raising a Son With Special Needs

Willie and Tamara, his Co-Chef/Instructor

Willie's last IEP has come and gone and I am still here to tell the tale. What implications there are in such an event. NO longer guarded by the School District. NO longer told what to do by the School District.  NO more data taken to ensure the goals are being met. NO more sitting at that long table every year learning all about the ways in which he is limited, deficient, disabled. No more IDEA Law protecting him. It is both a relief and oh so scary.

This IEP was worth noting as it was different from all others. I never even looked down at those piles of white papers listing progress monitoring, SDI's, goals, and weaknesses. Willie's last IEP was a true celebration of him in all his glory. It was such a phenomenal 90 minutes that it counts as one of my best Willie days in 21 years.

At that long table in that conference room, my husband and I sat and were mesmerized by and serenaded with the narratives of the three people that over the past 3 years have lived with Willie, worked with Willie, taught Willie, and loved Willie. Their words were music to our ears. Phrases were thrown around such as "I have never seen such growth in such a short period of time in any student." One of Willie's teachers spoke of the moment she became captivated by him 4 years ago. The following quote is lifted right out of this IEP from Willie's houseparent: "When agitated, Willie will fabricate a complex verbal smoke screen (a veritable dense fog) which frequently disorients and flusters his adversary, especially when his adversary's first language is not English." Besides the obvious fact that this man has missed his calling as a writer, this sentence speaks to the depth and complex understanding of Willie. The emotional equanimity that is spoken about in the next sentence is the area Willie has grown in and continues to need improvement. But the phrase emotional equanimity, and all that implies, demonstrates the remarkable and meaningful program Willie has been a part of for the past 5 years.

As I have recounted this 90 minutes of joy to my friends, they have all said that is what all IEPs should be like. And as I have attended 14 others that were nothing like this, my hope for you is to have at least one celebratory IEP, even if it is the last.

Willie and Andreas, his Houseparent

Epic Family Gatherings: Raising A Son With Special Needs

To bring Willie to Noah's Bar Mitzvah or not to bring Willie to Noah's Bar Mitzvah? That is the million dollar question! And it is a loaded one.

Three years ago, Willie came along with us to Zack, Noah's brother's,  Bar Mitzvah. This involved a wonderful opportunity for Willie to bond with his four Aunts and four Uncles as well as his fourteen first cousins. They all adore him and he they. Willie was able to be included in our luscious extended family. He supported his cousin through the celebration of his Bar Mitzvah. He ate gourmet and traditional Jewish food. He swam in the hotel pool with his cousins. Willie had the opportunity to get dressed up and attend Synagogue and then a fun Bar Mitzvah party. If you asked Willie, he would say it was a great time. If you asked Willie if he wanted to attend Noah's Bar Mitzvah, he would most definitely have said "YES!"

But we did not ask Willie. And we did not bring Willie. And here is what I didn't mention that Willie didn't get to re-experience: The awful car-ride with normal fighting siblings that sent Willie over the edge. The "Scary Main Sanctuary" at the Synagogue that Willie felt unable to remain in, probably due to his auditory sensitivity. The extended fight Willie had with that six-year old cousin, on the other side of the family. The arguing over how much food Willie could eat. The arguing again over how much food Willie could eat. The meltdown Willie had at the party because it was just too loud and too long. The family fight we all had during Willie's meltdown at the party. The tension in the hotel room at night as we all tried to settle down to sleep. And I will stop now for this is just the beginning of the negative parts of that Bar Mitzvah three years ago.

And Noah's Bar Mitzvah weekend was plain fabulous. Sure there was sibling fighting, but not nuanced with the threat of Willie having a giant meltdown.  We never saw our kids as they were enveloped in "that cousin bliss." We were able to totally be present at the Synagogue, with our nephew's Bar Mitzvah journey, and the very long but fun party. We slept soundly in the hotel room. There was little stress.

However, and I haven't asked my husband if he felt this way,  I felt like a limb was missing the whole time. I missed Willie.  Moreover, I missed him interacting with his warm and loving and very accepting extended family. I can't help but think we acted selfishly by not including Willie. He will not be in the family photos. He didn't get the opportunity to make those kind of memories.

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.