That Dreaded Phone Conversation: Raising A Son With Special Needs

When your child has a Disability, you have to spend time talking to The Insurance Company, The School District, Various Government Agencies, The Social Security Administration, etc, advocating for your child's rights. All these conversations end up etching a familiar pathway in your brain. Your pain and sorrow bursts forth and your anger spills over that you even have to do this type of advocacy work. Your entitlement and rage rear their ugly heads as these institutions are blocking your child's need for such services. It is true there are plenty of Customer Service Specialists and School Administrators that are empathic, but even they are limited. The norm, however, is Mike Nelson.

I spoke to Mike earlier this week from The Social Security Administration. I had a simple question for Mike. What would Willie's payments be once he moved to Camphill Soltane, now that he has turned 21? Our conversation definitely began badly. If your Special Needs kiddo receives SSI, you know how complex and confusing the language is for the benefits your child receives. I referred to Willie's benefits as Social Security Disability and Mike abruptly and dismissively corrected me with a canned script correcting my error.

I will not go on about how Mike ended up telling me that I needed to stop talking over him. In the end I asked for his Supervisor and we even had a fight over what Mike's name was. When I asked him his name, he responded: "I already told you." I didn't pay attention to that opening line of our conversation, as I have been there so many times before. When I asked him to repeat his name, there was literally a 30 second pause.

After I hung up, I was a mess. Having to defend myself to Mike when all I wished at that moment was that Willie didn't have to receive SSI. All  I wanted to do was scream/cry to Mike that my son had Meningitis that caused Brain Damage, and that I wish he was like my other children and didn't need this assistance. I wanted to tell Mike how his combative attitude towards me just re-opened wounds I try so hard to keep covered. That the minute he stared being nasty, my brain reverted back to the hundreds of conversations I have had in Willie's life begging for what he rightfully deserved as a vulnerable human being. I wanted to tell Mike how tired I am of advocating and fighting for Willie. I wanted to tell Mike how our conversation had broken my spirit.

Mike Nelson's Supervisor has yet to call me back, as promised. I am not even sure I want to talk to him. I can't see a Sensitivity Training being offered at the Department of Social Security's Disability Division. Can you? And anyway, my spirit is slowly mending and almost back to my status-quo of loving, accepting and being OK with Willie. Why risk that?

The Music Recital: Raising A Son With Special Needs

Every May, we are cordially invited to Willie's Music Concert by his teacher, Elsbeth Sunstein. If you cannot already tell that a music teacher from The Camphill Special School must border on magic, you must be able to by her sunny and welcoming name. Elsbeth is a beautiful, lithe woman with soft long white hair, which she wears up, and is always dressed in soft, muted, flowing white, pink or yellow attire. She is able to teach even the most disabled students to play the piano. Her voice is calm, quiet, and captivating. You just want to be near Elsbeth.

This was to be Willie's fifth concert, but his first playing the Guitar. The actual guitar playing was miraculous and full of spiritual energy. However, what I will always remember is NOT sitting with Willie, for the first time ever.

When I finally found a seat amongst the bustle of the rest of the audience, I, of course, saved one for Willie. But 5 minutes later, I finally realized that he had found his own seat, right smack in the middle of two old friends. It just so happens that both these young women are now living at Camphill Soltane, Willie's new Fall Program/Home.

As I watched him navigate his way through the concert, whispering to his friends, in an easy posture with legs crossed, I suddenly knew Willie was growing up. That his nervous presence consistently next to me during the past four Concerts, that required me to calm him down, was no longer necessary. Willie was coping with his nerves in a much more appropriate and independent manner.  Oh, I was thrilled to watch him play that guitar, but watching him sitting three rows ahead of me was the real Concert!

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!