Hiding The Candy Jar: Raising A Son With Special Needs

It's Christmas Time! That means there's lots and lots of candies, cookies, and yummy treats. In our family, we say YES to dessert. One-a-day, that is. We even have a Candy Jar which begs for attention. As our children have grown, they have learned to limit themselves with The Candy Jar, at least most of the time. Hence I keep filling it up, month after month.

As Willie has turned 21 and became "an adult," he has asserted his "grown-upness" through the Candy Jar and other such temptations. It used to be he would wait for us to give him his daily allotment of candy from that beloved jar. He would happily accept our single size portions with gratitude and a smile. His limited skills of initiation spilled right over in to the Candy Jar. Well that is OVER!

Growing up with a disability really of any kind is tough. The process of becoming a teenager and then an adult is fraught with conflicts, as for typical children. For a Special Needs child, the issue of control seems to be consistent across the board and one that causes real problems for most parents and children alike. Through my years, I have understood that Willie isn't in control of so many things we take for granted. His hands don't work right. His Brain doesn't seamlessly glide to the right word or help him solve problems.  We manage his everyday routine with too much hovering at times, all to maintain his health and schedule, to avoid physical and emotional meltdowns. As Willie has grown older, he compares himself to his peers and siblings who are consistently earning and respecting their new found independence. This lack of control over his life drives Willie crazy.

So food has been an area where Willie has always struggled for control. How many portions can he have? What size portions? How much salad dressing with those fries? How many snacks can he have? It is endless and has been since he was old enough to talk. And we argue silently as I attempt to continue to control what he eats, how much, how often, and the list goes on. For if it was up to Willie, he would not exercise portion control and would eat one cup of sour cream with those crackers every time. If it was up to Willie, he would drink soda all day long so our one-a-day rule is constantly met with resistance. If it was up to Willie, he would eat a dessert after every meal. So in an ongoing silent battle to manage his health and weight, I control.

And now that Willie is 21, he has said ENOUGH! At least through his actions with the Candy Jar! So at first when I found eighteen wrappers under the computer table, I was caught off guard. It took a couple more wrapper finding expeditions under Willie's bed for me to figure it out. Slow, I know. So now we hide The Candy Jar from Willie.  But not forever. One day I know and hope Willie will be able to decide to just have one piece of candy! Or maybe two.

The Phone Call: Raising A Son With Special Needs

I am in the Bathroom at Target. My cell phone rings. It is my son's school. I answer. "Willie is having a seizure. The Ambulance is on the way. Come quickly." 

As parents, we develop a special relationship to the telephone, especially when our kids are not with us. We need to be connected to our precious people through the phone because God Forbid you get The Phone Call.

I was reminded of the Target trauma yesterday when The Phone Call came again. This time he said, "Willie had a sledding accident. " But he has a thick Scottish accent and my adrenaline was already pulsing and I heard "Willie had a seizure." It took me at least 30 seconds to understand this it was only a broken foot.  Sure, I am upset. Sure, I am sad for my son to have such pain he cannot sleep for a night or two. Sure, I am frustrated that he will be even more sedentary than usual until his foot heals. But this Phone Call was a no biggie.

You see, all parents get The Phone Call sometime throughout their child's life.  It's just that when your son has a Seizure Disorder, has been in Critical Condition too many times, The Phone Call becomes transformed.  If it just a broken foot, you take a huge breath of relief. You learn that a broken foot can heal. Your Special Needs child can teach you literally not to sweat the small stuff.  They can teach you what exactly is the small stuff. You can turn away from that clear lesson and run around on high alert all the time. You can choose to worry that a terrible germ will get into your son's blood and cause Meningitis and then Brain Damage. You can worry about everything that could happen to all your children. That loop is endless and the possibilities drastic. You can spend your life waiting for the next Phone Call!

Or you can choose another path. You can realize that you are not in control of anything. You surrender. You find faith and hope in the moments. You can embrace your life as it is and choose this motto for your life: whatever good comes from such tragedy, and there always is such good; embrace it and wrap it around your sore and tired hearts. It is what will keep you going. Willie has taught me well and I  have listened. 

The Phone Calls keep coming. We must answer, with trepidation and hesitation. And we breathe a sigh of relief, depending on the news. And if we are taken into tragedy, we find a way to cope. We find a way to turn this into some positive. We have no choice. Our kiddos deserve this. They insist. 

Special Interests: Rasing a Son With Special Needs

Willie loves music!  When he was a baby and couldn't stand yet, he would pull himself up onto the stereo speakers and sway with the music. We played music endlessly for Willie, from Beethoven to Barney. It spoke  -- it sang -- to Willie's soul.

Willie's love of music evolved from an initial strong interest in bagpipes to guitars. Guitars of all kinds have since become a Special Interest to Willie. Kids with Special Needs often develop obsessions that the public calls Special Interests, a kinder term. "Obsessions" sounds pathological,  Special Interests sounds intriguing. The actual phenomenon is both.  For Willie, this means he owns too many books about guitars, too many guitars, and always wants more. Every birthday and Hanukkah, Willie wants a guitar. As he has grown, this has become more and more challenging. You see, Willie's hands don't work properly. He cannot play the guitar. He has just recently, at the age of 21, begun to write somewhat legibly. But even this accomplishment is a struggle and an infrequent task. Maneuvering buttons and zippers on his clothing doesn't come easily for Willie. Sometimes, not at all.  He cannot tie his own shoes. So, using his hands to make chords that create music is an insurmountable ambition. At least so far.

But Special Interest are powerful urges and motivators.  They push and push and push. They reflect deep yearnings. Willie's obsession with guitars in general has spilled over into his love of musicians. Slash, from Guns and Roses, is Willie's current hero. Slash's guitars are "cool!" And so is he. If I want to ever know what is in Willie's head, all I have to do is go into the History section of our computer. There Willie will jump from many You Tube clips of various Heavy Metal Bands. Then he moves onto looking at all these fancy, electric guitars his heroes play upon. Over and over, he jumps from one site to the next, feeding his Special Interest and trying to meet his unobtainable desire to play the guitar, to be a musician, a rock-and-roller, to have another life: one without Special Needs.

This gap between Willie's desires and his reality is heart-breaking and yet we did buy him his first Acoustic Guitar upon which to try and really learn. A chord. One strum. Something real. His Music Teacher at his school recommended it and volunteered to try to help Willie succeed in reaching his dream. We came to this decision to buy him a real guitar -- finally -- after a harrowing and now- comical experience which Willie once again had on the computer.

One evening, only a couple weeks ago,  I was checking my email. Willie was home from school for the weekend. I saw that Amazon had emailed me over 15 times with several different purchases. My blood turned cold. I knew immediately what had happened. I knew that my son, who sometimes looks completely normal, who yearns for guitars, who knows that his future before it was hijacked by illness included music and rock, whose executive functioning skills are impaired, who boasts a head of curly hair and would definitely be the perfect star in his own college band if he hadn't suffered Brain Damage -- this son had gone too far.

Willie had "one-clicked" purchased over $40,000 worth of merchandise from Amazon. He bought several Fender Guitars, sometimes, 2 and 3 times; electric cords and amplifiers which all "Rock and Rollers" would need to play such beautiful Fender guitars. There was more. They all added up to one truth: it took my breath away: Willie's raw desire to be normal took over his consciousness.  For Willie knew it was 'wrong' to do this. He somehow figured out my password for "One-Click" shopping and just clicked and clicked and clicked. The whole thing was and continues to be heartbreaking.

So. . . we gave him a Fender guitar of his very own. Not an Electric one as he so yearns for. But not a toy, either. It's an Acoustic model, one with which he may somehow, someday, find music. There is music in this son of mine which needs to come out. Willie is wrapped up by angels on earth at his very special school. And his Music Teacher is a true miracle worker.  So. . . the verdict is out if Willie will ever be satisfied with his guitar-playing skills.  But he has time. The wonderful thing about Special Interests are that they do not fade. Willie has a lifetime ahead of him to make his dreams come true. I can only pray he does. Oh, and quickly change my password.

Who Are You Today?: Rasing a Son With Special Needs

I wanted to write my memoir. Raising a son with Special Needs is memoir material. Besides all the other parents' memoirs I have read over the past 21 years have helped me immeasurably. I am not alone. There is hope. Our struggles are similar to others. We will survive. He will be OK one day.

So I decided last night to write a blog instead.  I had just finished my daily reading of a fabulous blog about raising Special Needs kiddos called Love That Max, and was once again moved to tears. And then it hit me: I am called to share my story too! Now that my son is 21, I do have so many stories to tell.  Stories that can and will help others, as other have helped me. I cannot wait anymore for all that space to open in my life to sit down and write my memoir. So a blog it is!

My son's name is Willie and he is 21. He is our first child and we had a perfect life in Austin, Texas as he entered the world. My husband, Charlie, was studying for his PhD at The University of Texas and I had decided to stay home with this much yearned for and loved baby. When he was 2, Willie got an ear infection, a common childhood illness. He seemed sicker than usual and thus went to the Doctor on a Saturday. The Doctor put Willie on antibiotics and said yes, he has an ear infection. That evening, Willie had a seizure. Another post will explain why we were "used to seizures," as Willie had had many in his short life, of unknown origin. So off to the Hospital we went, as was the routine. After getting the seizure stopped, this one was only 55 minutes, Willie was checked into the Hospital. But something wasn't right. Willie wasn't rousing and his applesauce-laden Depakote, to control his seizures, was dripping down his mouth. We kept saying to the Doctors something is wrong. They kept saying it's OK, give him time. And finally, several long hours later, the Doctors called us into a procedure room to say Farewell to our precious son. Things were definitely not OK. As the Physicians were attempting to run a Spinal Tap on Willie, he started slipping away.

There's lots more to this story for another time. But eventually, as Willie officially sunk into Septic Shock and a Coma, we were told that Willie had contracted Bacterial Meningitis.

Willie was in this Coma for a week and the hospital for 3. During that week, we were glued to his Hospital crib to either say Goodbye or to see him when he awoke. Willie lived obviously, but the Meningitis changed his life forever, leaving him with Brain Damage. During the Coma the Physicians said he wouldn't walk or talk again. But as soon as he awoke from the coma, his first words were "Daddy, I want yogurt." Then a couple days later after he had a blood transfusion, his face turned all rosy pink and he started running all around the hospital room. Still, the Doctor's urged all kind of Therapies: PT, OT, Speech. They wouldn't and couldn't tell us Willie's future. Brain Damage is so unique.

Nineteen years later, Willie thrives. He attends the Transitional Program at The Camphill Special School. It has been quite a journey to get him here, with such extreme lows and not so many highs. He still struggles but he is happy and is a valuable and contributing member of his community.

Besides introducing Willie in this first blog, I want to explain the title. "Who Are You Today?" has been a constant imaginary game Willie has played since he could talk.  He takes on the personae of a character from a book, movie, myth, etc and talks to us from that perspective. You never know who he is going to be. Willie's rich imagination and inner struggles dictate the imaginary character of the day. The 21 year old Willie struggles with why he has Special Needs and his 3 siblings do not. So he becomes characters who are on the fringe of society and who have struggled and continue to. His character choices these days are Slash, the singer from Guns and Roses, Batman, The Phantom from The Phantom of the Opera, and Darth Vader to name a few. When you talk to Willie, you can usually tell from his accent, posture, mannerisms, and sometimes costumes who he is.  Not always. So I am constantly saying to Willie "Who are you today?"