Selected: Raising A Son With Special Needs

Today I opened a letter addressed to my son, who was 18 last October. It was from The Selective Service informing him that he needed to register with them. The first sentence said: "Our records indicate that you are a man..."

Willie never got that letter. Until today, I wasn't even aware that 18 year old boys were still required to register with The Selective Service. And why is it called the Selective Service anyway?

Sure, the letter took my breath away for my son who is required to make himself eligible to go to war, if one should arise. But after that feeling, my next reaction was all about Willie.

Willie receives Disability from the Federal Government and I had to work very hard to establish this for him. But I don't walk around thinking much about how our government views Willie. And then smack, there it was: HE IS DISABLED, exempt from registering with The Selective Service, and quite unable to fight in a war. It was a knife to the heart visceral reaction. A slap in the face. As if a loud megaphone was resounding: WILLIE IS DISABLED, NOT SELECTED, INFERIOR....

And another thought I have is that this other son of mine, 3 years younger than Willie, is referred to as a man in this letter from The Selective Service. And I know as well as other Mamas out there, that my 18 year-old, although 6 feet tall, is definitely not a man yet. But what about Willie, who is turning 22 in 4 months. Is he a man?  Not according to The Selective Service. According to them, his is another category, DISABLED, and not truly a man.

My reaction of course is tainted and weighed down by years of navigating this non-disabled world with Willie. Day after day I have had to advocate for him and explain him to the world as a capable, smart, funny but limited child. And now as he ages out of the School System in 13 days, he is not a child anymore. But neither is he a man.

I am left feeling grateful that we are not in wartime for my 18 year-old boy-man. And left feeling uneasy for my Willie, as he transitions from his School-Age Program to an Adult one. I am proud of Willie as he evolves into a wonderful, kind, competent, sensitive, loving and disabled 21 year-old. Moreover the Government will care for and protect him, not the other way around. So why does that knife wound sting so?

SOCIETY and DISABILITY: Raising A Son With Special Needs

I am consumed with Willie's latest quandary. Who will pay for his new program, Camphill Soltane? Is it our societies' responsibility? Is it ours, his parents? I don't have the luxury of pondering these issues because on July 16th, the School District's financial support ends. FOREVER!

As I navigate Willie's journey to true adulthood, I am forced to wonder about and advocate for societies' financial responsibility in his adult life. A wise man and mentor explained to me that our society made a moral commitment to care for those unable to care for themselves. He explained to me that in the 1970's, the "De- Institutionalization" of our Developmentally Disabled citizens began. Our society committed to supporting and absorbing the Disabled populations into our culture.  I embrace and understand this principle.  However, this idea that society somehow must care for or really pay for my disabled son's life, now that the school money is over, is super provocative.

My husband and I yearned for Willie 23 years ago. After he was born and suffered seizures and then meningitis, it never dawned on us that anyone else would be responsible for his well-being and care. This of course included how much money it costs to feed and house him, and the endless medical and therapy appointments he required. (There were numerous battles with the Insurance Company, but we payed our premiums to receive these services.) Of course, as Willie started the Public School System, we entrusted them with his medical, social, emotional, and academic care; as scary is that was. After we ran into deep trouble and were unable to create a program that best suited his needs, we pushed the School District to the limit of the Individuals With Disabilities Education Act (IDEA became a law in 1975). It was clearly the School District's responsibility to educate Willie. It was the Law! Sure he was still our kiddo, but the School had to provide him a fair and adequate education. This made sense and I fought for Willie with my heart and soul.

But now? And if I do come to accept that society has a commitment to care for those who cannot take care of themselves, why do I feel so unsure? Why do I have to advocate again for Willie's rights? And yet here I go again, discussing Willie's limitations, his disabilities, all of the painful parts that make him one of those people who cannot take care of himself. The parts of Willie that make it unsafe for him to stay alone. The parts of Willie that are emotionally volatile due to the Brain Damage. The parts of Willie that make it that he is unable to have and do a real job. The parts of Willie that are fraught with years of grief regarding the child he might have been. But no time for grief. I am in a new battle. But the ground under my feet is just not as firm as it used to be.    

Siblings: Raising A Son With Special Needs

All my kids were together at home a couple of weeks ago. Like any family, as kids grow-up and go off to college and such, this reunion is rare and usually takes planning. Like regular families, this gathering carries expectations and excitement from all persons. Like all families, the dynamics are rich and complex. For the Special Needs Family, it is even more complicated and plagued with what-ifs.

As I drove home with Willie for that weekend, he enthusiastically spoke about one of his younger brothers, the one who is away at college. Willie knew Teddy would be home that weekend and you could tell he was psyched. When the two of them came together that weekend, there was a calm, a knowing, and a joy you could pick up coming from both of them.

And probably like most families, they, brothers home for the weekend, didn't spend too much time together. But I will never know. As Willie was drawn to his routine on You Tube in the Computer Room, Teddy was hanging out with HIgh School friends. As Willie went on an adventure with Dad, Teddy remained asleep and then thoroughly engrossed on something on his computer screen. And I wondered all weekend, if Willie was without Special Needs, would they be inseparable on this rare reunion? Would Teddy look up to Willie as the older brother, instead of the other way around?  Would they share deep secrets and private conversations I would never know about? I wonder what their relationship would have been like.

The last day that our family of 6 was together, we went to the pool. Teddy never joins us at the pool. And Willie loves to swim. But this afternoon, everyone showed up at the pool. The brotherly/sisterly connection was strong and superseded special-needs. The companionship was fierce as they all sat together schmoozing, complaining about me, deciding what snack they would order from the snack-bar. I watched them out of the corner of my eye, my 4 children, all in one space, and smiled big. It was a rare and happy event. Special needs or not!

But I will always wonder, what if?

An Amazing Book for Siblings!

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.