Domestic Psychology

world’s longest umbilical cord

// September 14th, 2008 // 6 Comments » // aspergers, parenting

Thursday night, Tommy called to say that he wanted to stay at school instead of coming home. Fine. Then, he asked me to bring him clean clothes. Not fine. I explained that ALL of his pants and underwear were already in his dorm room. Without a moment’s hesitation he asked me to drive up the Kentucky border and do his laundry for him. Doug said no. Friday, as *gas prices soared and stations ran dry, I texted Tommy that he would have to do his own laundry. Tommy sent back, “PLEASE Mom. I need you.” My heart shattered in a million pieces. Doug sat silently while I hysterically explained why I shouldn’t go and what a bad precedent it would set. Then, he handed me $20 and told me to drive safely.

I criticized myself the entire drive there. I sang along with the radio. “Stupid, stupid, stuuuu-pid me.” Sometimes, I didn’t have to make up my own lyrics. “Insane in the membrane. Insane in the brain.” As with every trip before it, the drive on the Interstate was the easy part. Once I hit the two lane highway, the drive became drudgery. Just as I thought I was going to fall asleep, the mountains came into view. Mountains take my breath away. I found myself breathing short, shallow breaths and I drifted the rest of the journey in a hypnotic calm. Perhaps it was this calm that caused me to be so surprised by the sight of my son jumping up and down on the road that leads to his dorm. The child who is twice my size and usually operating in low gear was waving both of his arms and smiling as if he hadn’t seen me in ages. The two weeks felt like forever to me, but I didn’t expect him to be so happy to see me. I parked the car and readied myself for a rib-crushing hug. Tommy opened the car door as he called, “Molly!” He gave the DOG my hug and the two of them raced around the building.

After showing off the dog who he missed more than me, Tommy loaded his laundry in the car and we went out in search of a laundromat. Yes, the dorm has a laundry area. I think the only thing worse than your Mommy driving two hours to do your laundry would be your Mommy doing it in the boys’ dorm. We drove into Kentucky, to the town that distributes the Christmas shoe boxes and care packages to the very neediest people in Appalachia. The dirty, crowded laundromat made me homesick for the luxury of my neighborhood laundromat. I talked, talked, talked laundry as Tommy cheerfully sorted and loaded the machines. He did his own laundry until it was ready to be folded. Then, I thought I would have a seizure if I didn’t jump in and fold the clothes with him. I tried ignoring the way he was folding the clothes. Really, I did. It was just so very wrong. Do you know why Doug never folds laundry at home? Because he does it wrong too. What? Like you don’t have things at your house that you think nobody else can do correctly? Riiiight.

With Tommy’s laundry done, we made a quick stop at WalMall for Tommy’s Sprite and cereal needs. No, he doesn’t mix them together. I drove through the small, square burger restaurant and dropped Tommy back at his dorm. He was calm and content. I was glad I made the foolish trip. I didn’t realize it, but I needed to see Tommy. I drove home listening to the Hurricane news reporters. They bragged about staying in a hotel with flooded first floors. They stood outside and described trees flying through the air. They deserve a diagnosis more than Tommy does. I texted Tommy today and asked him what he does on the weekends. “Be normal. Be happy.”

* Doug told me that the only thing anyone wants to read or talk about right now is gasoline. This is the only time I am going to mention the whole media-induced panic.

testing his wings

// September 7th, 2008 // 6 Comments » // aspergers, parenting

Earlier in the week, Tommy called to tell me he wanted to stay on campus for the weekend. He then asked me to make the 4 hour round trip drive to give him clean laundry. I told him he could go into town and buy himself a pair of jeans and a bag of underwear or he can do his own laundry. His confusion at my response made me question myself all week. Maybe I was expecting too much. Maybe I should drive up there.

Even though he decided to stay on campus for the weekend, I still made my daily phone call to ask Tommy if he is leaving his room for meals. In my mind, he’s hiding in his dorm room, eating cereal three times a day while immersed in computer games. “Sigh. This isn’t a good time for THIS.” What? Did the child who still occasionally asks me to clarify what the tone in my voice or expression on my face means just avoid acknowledging who he was talking to as if I was embarrassing him? I asked him if he was alone. “No.” He’s . . . hanging out with peers? I asked him if I should call back later. “No. I’ll call you.” Did my son just diss me? Why, that is just so, so, so freaking NORMAL! He’s making friends. He would rather be with peers than with his parents. I am so happy that I don’t even care if he passes all his classes. I’ll care when midterms roll around and he realizes that college professors aren’t accepting his disdain for adjectives, straight to the point style of answering questions. Right now, it doesn’t matter. Tommy is happy. That makes me happy.

Why colleges should medicate parents

// August 17th, 2008 // 6 Comments » // aspergers, parenting, school

Friday night I stayed up until 2 packing for Tommy. The rest of the night I stared at the clock. Saturday morning was a blur of car loading and trying to get out the door. I busied myself with paperwork the entire drive to LMU. As the car entered the campus, Tommy whispered, “I have butterflies in my stomach.” As long as I live, I will never cease to be proud of Tommy when he identifies his emotions. The amount of work it took for him to be able to do so is indescribable to NT parents.

We stumbled into the student center and the LMU students snatched Tommy and put him on the assembly line that is freshman check-in day. I leaned back into a wall so hard I probably left a large booty sized dent. I watched Tommy signing papers, getting his room key and talking with the other students. The room was ice cold and I felt a familiar but distant panic and fear. It was the exact same feeling that I had 18 years earlier as I checked into the hospital to force the overdue Tommy to make his entrance into the world. After a long labor and an epidural that left me completely numb below the chest for HOURS after delivery, Tommy emerged and his Apgar scores blew chunks. Instead of being in my arms, he was surrounded by a growing Army of NICU nurses who rushed him out of the room 5 minutes after he born. Fifteen minutes after Tommy was born, I sat alone in my room and said out loud to nobody, “I just had a baby.” A stared at the door, the phone and the clock over and over again. Waiting. After 30 minutes, I told myself my baby had died. I wept and tried to will my heart to stop beating. I just wanted it to stop. An hour after delivery I was shown a picture of my baby that did not make me feel better and told that he had a pneumothorax. Many hours later, I was wheeled to NICU to see my son. I went back to my room and cried more. The nurses said it was just hormones and told me I would get over it. The next day I was discharged and my crying continued. The doctor said, “this too shall pass” and walked away. I lived on the couch outside the NICU for a week. When I finally left the hospital with my son, I felt like I had a bullet lodged in my heart that I would carry forever. Leaving my child at school and driving away on Saturday afternoon, that bullet shifted and the pain was immense. The daily daggers from the rest of my life were unbearable.

Tommy called and texted all night. My phone no longer sits on my desk. It is clutched in my hands day and night. “Make sure my snake gets a swim tonight.” “I walked to the grocery store.” “The showers are cold.” “I’m going to play paintball now.”

I could enroll 15-year-old Sarah in college right now and have no fears. She would adapt instantly to dorms, make friends and be a straight A student. Now. She already has the maturity and the ability. She will pack up her belongings, drive herself to college and move herself in without any help wanted or needed from us. I will miss her horribly, but I won’t have the anxiety that I have now. Noah? Noah will probably skip college and be a freegan beach bum. Amy is going to be enrolled in military school before adolescence to learn to control that nasty little temper of hers. Evan is still my baby. Don’t talk to me about 3 not being a baby. I can’t hear you with my fingers in my ears. La-la-la-la-la.

feeling fidgety

// July 22nd, 2008 // 3 Comments » // aspergers

Tommy’s financial aid award letter finally came. His funding is coming from a dozen different sources and it has three errors I need to get corrected, but I think it’s going to work. Of course, the school still doesn’t want to discuss it with me. I told them the three things and they said they would look into it. Who am I kidding? They probably rolled their eyes and cleaned out their pencil sharpener the entire time I was talking. After working out the financing, one of my primary concerns is making the dorm room Tommy’s safe place. I wish I knew more about the dorms than that they have XL twin beds on wood platforms and there is one bathroom for each floor. When the Open House tour guide showed everyone the single floor bathroom, Tommy declared himself finished with the tour without seeing an actual room and rather than risk a meltdown in front of 30 other freshmen, I decided to fight the dorm battle later. This Friday, he is going to walk in that dorm room and embrace the horror. In the meantime, I have been making list after list of things to do, things to find and things to pack. I have one item on Tommy’s list that isn’t on traditional dorm supply lists. I need to equip Tommy with a basket full of fidgets. Tommy doesn’t need weighted vests, hourly brushing therapy or clothing without labels any longer, but he does need fidgets. Fidgets like bendeez, stress balls and all the fiddles. Tommy would love these spiky gloves. When he doesn’t have a fidget to stretch, squish and bite, Tommy does things like nervously eat the rubber earpiece off of his glasses. The best source for fidgets is conventions. They are very popular marketing tools. Unfortunately, I no longer run with that crowd. Anyone going to a convention in the near future? Can I come along too? I didn’t think so. Like I said, I’m still at the brainstorming and list making stage. Maybe I need to go chew on one of Tommy’s drinking straws. Oh, I just remembered that the only convention I am attending this year is just around the corner. I will be at the Mayor’s First Day Festival! I will be the person wrestling small children for the fidgets. I might be found at this table. Is anyone else planning to be there?

a visit to DHS

// July 15th, 2008 // 3 Comments » // aspergers, child welfare, people

Among the many government aid programs that exist, there is financial assistance for people with disabilities to get vocational training or a college education. I have always known this, because my grandmother earned a college degree with disability funding. The idea is that people with disabilities have skills and knowledge that make them employable and independent. So, at your final IEP meeting, someone from Vocational Rehabilitation is present to do an application for aid. That was in May. My only real memory of the meeting was Evan giggling and throwing crayons until Doug took him outside so that the case worker interviewing Tommy could turn to me and tell me that my then 2-year-old needed Ritalin. Since then, well, I’ve been in denial. Not about Evan. He’s just the youngest of five and I may be a teensy bit more lenient with him. I have been refusing to allow myself to accept that Tommy isn’t going to spend the rest of his life under the safety of our roof. My son isn’t really going away to college. He couldn’t even get dressed and on the school bus without his parents repeatedly asking him to get out of bed.

Then, I looked at a calendar last week and had a little panic attack. I think I’ve calmed down a bit, but Doug might disagree with that assessment. Hysterical or not, I had to meet with the case worker so that Tommy could sign his paperwork. Our initial meeting took place at the high school, but today I was sent to the Middlebrook DHS building. Mmmkay. Have you ever been in this building? To get in the building, you walk past a row of extremely pregnant women and teens smoking in front of a flower bed sized ash tray. You enter the doors and it is like the back of a classroom. Rows and rows of people are seated with their backs to you. A choice must be made. What appears to be an information desk is directly across the room. Nobody is there and you have to walk all the way around the people to get there anyway. On the left side of the room is a clerk at a counter with two women talking to her. It looks like the place where people are ligning up to be seen. You walk over there and immediately realize that this is the interpreter’s counter. The information desk is still unattended. Only one wall left and it has a row of clerks behind protective glass. There are signs everywhere ordering people to remain behind the red line. We walked to the red line. Two of the four clerks looked up and then returned to whatever they were doing in their safe place. After a bit, one of the women snapped, “What?” I was a little stunned by her annoyed tone and wondered if I had broken a rule. I told her we had an appointment with MM. The clerk’s demeanor changed and she asked the clerks on either side of her what she was supposed to do with MM’s clients. One of them suggested that she page MM. Tommy and I sat down in one of the rows of chairs to wait.

There were less than half a dozen men in the room. While we were waiting, a woman came out of the back room, glared at one of them and they left the building together. Every other person in the room except my 17-year-old son and I, was either carrying an infant car seat or obviously pregnant. The majority of them were teenagers. They talked on cell phones, smacked gum and played with their hair, but not a single one of them took their baby out of the car seat. Three dozen infants sleeping, cooing or crying and all were being completely ignored. Do you have any idea how much that bothers me? I wanted to go offer to hold one of those babies and treat them like people instead of dolls. Lucky for me, I didn’t get arrested for being a nosy old lady since MM the case worker came out to get us. We spent the next hour and a half filling out paperwork. Tommy isn’t even getting his full tuition paid by Voc Rehab, but it’s a part of scraping the needed money together to give him this chance. After years of IEP meetings that lasted for 4 and 5 hours, this was a breeze. The only time I felt my skin crawl was when the caseworker said she was relieved that we didn’t bring our youngest child. Raise your hand if you think this worker has no children of her own. We left the room and found a nearly empty waiting room. I guess there’s not much paperwork involved in whatever pregnant women do at DHS. The best part of the appointment was the knowledge that Tommy has to re-visit the case worker at the beginning and end of every semester until he is employed full-time. Blech. Oh wait. I have to gather everything needed to equip a dorm room. Sheets, blankets, towels and does he even have enough clothes to last a week without doing laundry? Ohhhhhh, why is this room spinning?

don’t anger the mother bear

// July 7th, 2008 // 7 Comments » // aspergers, people, scouts

One of the other scout parents has “concerns” about Tommy attending Boy Scout camp for a week without Doug there also. The person who was asked to relay this information only gave us one quote. “Is Tommy annoying on purpose?” I asked the concerned parent if they are annoying on purpose. No. I would not do that. I might eat their face off though. No. I won’t do that either. In fact, I won’t even be invited to the meeting. I would put my hands on my hips and give the parent one of my patented looks while explaining that we didn’t allow Tommy to join scouts until he was capable of self control and displayed no behaviors that you wouldn’t experience from any other boy there. No. Tommy is better behaved than many of the other boys in the troop. They just don’t have a diagnosis that their parents share honestly with the troop. For some reason, Doug thinks he can handle this discussion with more tact than I can. I might tactfully sign the things I am not allowed to say. On the other hand, I think I’ll just let Doug handle this one.

sleep deprivation

// November 21st, 2004 // 5 Comments » // aspergers, health

About five years ago I had to take Tommy to another city for a medical test. The test began at 7 a.m. and required that he stay awake the entire night before. Tommy can’t stay awake if he takes his meds, so sans medication, Tommy and I checked into a hotel near the hospital. As the night wore on, Tommy got louder and more active. His impulse control was completely gone and by 3 in the morning, management asked us to leave. Exhausted and desperate to keep Tommy awake, but calm, I tried driving around talking to him. If I had kept this up I would have actually fallen asleep at the wheel so we searched for a place to go. A 24-hour Krispy Kreme rescued me. Tommy watched them make donuts, asked the employees a million questions, clogged the toilets and flooded the bathroom floors but we made it through the night. We checked in and the nurse frowned when she saw Tommy. “He seems too well rested, you were to keep him awake all night.” I insisted that neither of us had slept a wink and the tests proceeded. The tests showed nothing wrong but that wasn’t the best part. The best part was that I carried a sleeping Tommy to the car, drove the 3 hour trip home and went to bed for 6 hours of sleep before Tommy woke up.

misplaced Tommy at Disney

// October 4th, 2004 // 3 Comments » // aspergers, child welfare, parenting, travel

It’s no longer the weekend, but I’ll tell one more story in honor of Barry who is enjoying the week at Disney World. Our entire extended family went to Disney in December of 2000. It was a wonderful trip but the memory that hangs with me is about Tommy disappearing for hours in the Animal Kingdom. We were all barely inside the park and it was my first time in this particular area of the Magic Kingdom so I confess I was doing more looking around than looking after my children. Apparently Doug and my parents were doing the same thing. We were walking happily until we realized Tommy was missing. What went through my mind may upset other parents but I’ll say it anyway. If it had been any of the other children I would have jumped to child abduction hysterics and been in the park office demanding to see the exit videotapes. Because it was Tommy I looked around and saw a fence around the alligator and other wild animals area. I wondered if Tommy felt some urge to touch an alligator. I looked another direction and wondered if he’d crawled under equipment to see how it worked. I was hysterical that he had felt like he just had to do something horribly dangerous.

Doug quickly alerted a park employee and my parents took over entertaining and watching the other two children. I ran around the park like a chicken with its’ head cut off. I looked under racks of shirts and stuck my head in employee only areas. The employees stood back and let me have my ridiculous freak-out. When I was out of breath enough to pause and survey the area, I noticed something remarkable. At the entrance to every store, ride, restaurant and restroom was a Disney employee standing guard and reporting in on a walkie-talkie that their area had been checked. I accepted that my efforts were pointless and returned to my parents, who were anchored where we last saw Tommy.

The family was accompanied by a Disney employee who was explaining where each area was as it was reported on. She talked calm and slow and kept putting her hand on my shoulder. Finally someone reported in that he’d been spotted on a park video camera. We all raced to the dinosaur ride. Tommy was standing at the end of the ride with a big grin on his face. Apparently he had looked at a park map, decided what he wanted to ride and done it! I was a basket case and demanded that we leave. The park employee insisted that we ride one ride together. This woman was determined that we would have a happy memory of our experiences at Disney. We were escorted to the front of the line and all boarded the dinosaur ride with our personal park employee. After the ride the employee handed us the group picture that the park takes during a scary moment in the ride. Tommy had known a dinosaur head would pop out and was hiding his head. The employee held up the picture of everyone but Tommy (even though he sat right beside us) and said “Look, even when he’s with you, he’s not with you.” Truer words were never spoken. We went back to the hotel and I never did see the Animal Kingdom area of the park. I’m still not sure if I want to go back.