Monthly Archives: September 2011

Wit and Wisdom: The Book

I am thrilled to announce that I have been published in an awesome new book: Wit and Wisdom from the Parents of Special Needs Kids, an anthology of essays written by over forty bloggers, and edited by Lynn Hudoba.  It’s a fast-reading, highly enjoyable book, one that fellow parents will be nodding along to and laughing alongside. Most of all, it’s a hope-filled trove of inspiring stories and insight from over forty bloggers – all in one place!

P.S. Those of my readers from TeenAutism will be pleased to know that my featured essay, “The Little Things,” includes a never-before-published Nigelism! It’s a good one! Click here to order your copy of Wit and Wisdom from the Parents of Special Needs Kids.

It’s Okay Now

I was leaving for work the other morning, walking to my car parked in the driveway, when I heard something that instantly got my attention. It was coming from the bus stop for the middle school kids, and it sounded like an argument or fight. I listened a few more seconds and realized that one kid was loudly “performing” while the other kids stood in a semi-circle around him, laughing, ganging up on him. My PTSD kicked in, my heart raced, and my blood ran cold. Nigel had left several minutes earlier, riding his bike the opposite direction to the high school. I knew that the situation at the bus stop had nothing to do with him. But my body remembered how it felt, four years ago, to know that it had everything to do with my son. That he didn’t know how to interact with his peers so he “performed” for them, acting out a scene from a movie. They laughed at him, and he became agitated and angry, which made them laugh more. As a parent, it was horrible to witness. My instinct, four years later, was still the same as when it was my own child being targeted. I started to go over there to lecture them about not laughing at someone who communicates differently. But after I took a few steps, I realized that the kids at the bus stop were not doing what had been done to Nigel four years ago. The louder kid was trying to engage them in playing along, and they were interacting, laughing together. It wasn’t what I thought it was. It was okay. And, still shaking with adrenaline, I turned and walked back to my car and drove to work, trying to contain the sobs in my chest.

*

We recently had Nigel’s annual IEP meeting. It was a big one, now that he’s in his junior year of high school. Yes, you read that right – junior year. We’re in heavy transition mode, moving into the “later phase” of transition as described in The Autism Transition Guide: Planning the Journey from School to Adult Life (which is a fantastic resource). We’re almost there, people, and I’m trying not to freak out about it. This is what we spend all our time, energy, and effort preparing for. This is where the money meets the mouth. The moment of truth. And we’ve got just two school years left. There’s a lot to do in little time. The “good” news is that by now, most of Nigel’s IEP goals are executive function-based, as opposed to academic or even social. His social skills class has dropped down to twice a month, and I wondered if it was enough, wondered if his social interaction at school had really progressed to such a low-need level to not even necessitate an IEP goal, even though I agreed that the executive function goals are paramount at this stage of the game.

This past Friday was the high school’s Back to School Open House, and Nigel argued that he didn’t want to go. “I spent over six hours there today!” It was the end of a long week, and I didn’t want to go either. But it’s incredibly important for special needs parents to attend Back to School Night, especially when your child is older and has multiple teachers. It’s a great opportunity to touch base with those who attended the IEP meeting and to make contact with those who didn’t. And I remembered that in previous years it had been awkward discussing Nigel’s strengths and weaknesses with him standing in the classroom. So I agreed that he didn’t have to go, and I went to the high school alone, picked up his schedule and a map, and began wandering the halls to find his classes.

I have a pretty standard thing that I say to his regular ed teachers, which is basically to introduce myself, make sure they are aware that Nigel has an IEP for autism, and tell them that sometimes, due to his autism, Nigel will answer a question or make a comment and get off-topic with an idea that he’s passionate about. I tell them that usually a gentle redirect, to remind him of the topic, will suffice. I tell them that if they have any questions or concerns to feel free to contact me, and I thank them for their work with my son. You’ve got to keep it short and sweet because there are other parents waiting in line to do the same thing. But it’s so important to put in the face time, and so worth it.

Finally, I found each of his classrooms. The teachers who had attended the IEP meeting were genuinely excited to see me and tell me how well Nigel was doing and that they were very happy to have him in their class. That comment alone, which I usually only hear from his special education coordinator and social skills moderator, was enough to generate a lump in my throat. But then, when I said my spiel about him sometimes getting off-topic in class discussions, not one, not two, but all of his teachers got a slightly confused look on their faces and said, “Everything he says is right on topic.” For a split second I thought, my kid? Really? They’re not confusing him with someone else? And then I casually smiled and said, “Great! I’m glad to hear that’s not an issue for him anymore!” But inside I was vacillating between wanting to do cartwheels and trying not to cry from sheer joy. He’s on topic! All the time! They’re very happy to have him in their class! That’s four years of social skills classes at work – that’s what that is. And fourteen years of speech therapy. And nearly seventeen years of believing that it would be possible, that one day he would fit in with his peers, still different, but greatly appreciated for who he is.

*

Some time ago, my wise friend Elizabeth posed this question: “If you could go back, what would you have told yourself right after receiving your child’s diagnosis?” My first instinct was that I would tell my twenty-six-year-old self, who had a seventeen-month-old and a just-turned three-year-old, non-verbal child with autism, “It will be okay.” I had other things I wanted to say, like “Ask for help,” but mostly, I just wanted my younger, scared self to know that I would get through it. And yes, almost fourteen years later, there are still plenty of concerns for Nigel’s future and many stressful things I need to do to facilitate everything. But for the most part, it’s okay now. Wait – do I really hear myself daring to say those far-reaching words? Have we truly arrived? Part of me says that time will tell. But another part of me says that no matter what happens, if he’s gainfully employed or living independently in adulthood or not, it will still be okay. It is now, and it will be. That much I know. That much I still believe.

A Different Kind of Help

 

“It is one of the beautiful compensations of this life that no one can sincerely try to help another without helping himself.”Charles Dudley

“On a spiritual level you will experience a different mode altogether. Your attention should turn to others and their needs; find ways to be of help and give time and energy to worthwhile causes. You must lighten your burden of questions and doubts and the best way to do so is by directing your attention to another direction, away from yourself.” – from my numerology report for 2011

A few years ago I was into numerology – numbers don’t lie, and all that. I’m not sure that I really believed all of it, but I did notice some uncanny coincidences in the reports I would find online and where I was in the epicycles. That part definitely resonated with me. At the time, Tarot.com offered numerology reports two years in advance, and I downloaded my report for 2011 long before the last decade was over. I read it and filed it away, and then around February I cleaned out some files and found it.

At first, the part about helping others perplexed me – selfishly I thought, if anyone needed help, I did. I knew I was depressed and, after over a decade of single parenting, I feared a complete breakdown. I stopped blogging and spent a lot of time watching X Files episodes with Aidan. And then my dad’s cancer accelerated, and with my siblings, I took care of him in his last weeks, days, hours, and minutes, and  I thought, Ah. This is what the numerology report meant by helping others. I returned home a different person.

But I still didn’t feel like that was it, and my attention turned inward again as I grieved for my father and tried not to think about the fact that my 15-year-old son had decided to live with his dad, 700 miles away. Shortly after his birthday, Aidan flew back here with Nigel, and we enjoyed a short, four-day visit with him. I took some time off work, and we went to Crater Lake, where my mom is an Interpretive Ranger. We spent time with my sister, my niece and nephew, and had dinner with my aunt and uncle. We watched some more X Files and Aidan showed me the ropes with my new iPod. And all too soon I found myself driving him to the airport, going through the motions of waiting in line to check his bags and get my pass to accompany him to the gate. But because he is now 15, they would not give me a gate pass. “He just turned 15 last week!” I pointed out, wielding his passport. “He’s my son, and I’m not going to see him for over two months!” I pleaded, aware of the fact that I was probably embarrassing him. I knew that he would be fine on his own, but I really wanted to wait with him at the gate. They spouted off something about policy, and I turned away, willing myself not to cry. I took a deep breath and motioned Aidan over to some seats near the line waiting to go through security. We sat down and I told him that I had a letter for him that I had wanted to give him at the gate before he boarded, but that I would have to give to him now. I handed it to him, and he opted to read it right then, so I sat there as he read the words I had so carefully chosen to tell him how much I loved him, that I unreservedly supported him in his decision, and that if he ever changed his mind I would be so happy to have him back. He thanked me and hugged me, and then we waited in line, my heart in my throat, trying not to be angry at the airport personnel. When it was time, I hugged him tightly, breathed in his scent, told him I loved him, and kissed him at least five times. “I love you, Mom,” he said as I backed away, trying to smile.

I watched him as he went up to the counters, put his jacket and shoes in the gray plastic trays, took the full-size X-Box game console out of his roller as instructed by security, walked through, and efficiently repacked everything on the other side. He’s been in airports more times by age 15 than I had been by age 30. He’s a pro. I watched him sling his messenger bag across his chest, check the monitor to see which gate to go to, pull up the handle on his roller, and head off. I was so sad – yet so very proud – all in the same moment. I knew I had helped him by letting him go with love.

Back at the house, Nigel and I had dinner together, just the two of us at the table. We talked about how strange it would be with Aidan gone. We watched a movie together, and then Nigel opted to build some Lego. I wasn’t sure what to do with myself. I sat down on the couch with a National Geographic magazine, and, as if on cue, the phone rang. It was one of my good friends, another long-term single mom, who had been out of work for several months. She, with her daughter, had been living about three hours away in a larger city, trying to find work. She ended up losing her house and her car and decided to come back to southern Oregon to temporarily stay with friends-of-friends whom she did not know well. It turned out to be a negative environment, so I went to pick them up the next day, and my friend and her 12-year-old daughter came to live with us.

Nigel had been asking me for three years to let him have the much larger “game room” (as we call it), where he keeps his massive Lego collection, for his bedroom, and he was ecstatic to move his things out there so that T’s daughter could have his old room. I moved my desk out of the office and into my bedroom so that T could have the office as her room. Within days of being here she has lined up two job interviews and, through another friend, a car fell into her lap yesterday.  I know she was meant to be here.

I also know that this is more of the help I’m meant to provide for others this year. That’s obvious. But the truth of the matter is – and I have told her this several times – that her being here is helping me just as much as it’s helping her. Nigel is benefiting immensely by having a friend in the house who matches his current emotional age. She’s a sweet and insightful girl who is happy to watch movies with him and patiently listens while he narrates whatever they’re watching.

And then there’s this – I never realized how much I would benefit from having a nurturing adult in the house, after all these years of going it alone. I never realized how much I needed her here until she came. I just wanted to help out a good friend in need. But the fact is that her mere presence has calmed my spirit and “lightened my burden,” just as my numerology report said it would. I suppose it’s a no-brainer that in helping others we help ourselves, but I never knew just how true that is until now.