Out of Nowhere

It seemed like it came from out of nowhere, and in some ways, it did. But lately I’d been noticing ambulances around town, even those without their sirens and lights on. And three weeks ago I commented on a friend’s blog post that the only child I’d witnessed having a seizure was not my own.

A few days ago, Neil had his first tonic-clonic (grand mal) seizure. He had been on the couch in the living room watching a movie, and I was reading in my office. I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Neil, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.

I was terrified. My legs started shaking as hard as Neil’s. I pulled them out from under the coffee table and placed them on the couch and shoved the blanket out of the way. With dread I realized that he was having great difficulty breathing and yelled out to Adam to call 911 and bring me the phone. The dispatcher kept me calm while waiting for the ambulance to arrive. Neil’s breathing alarmed me, but after the convulsions stopped, it seemed to come a little easier, although it was still ragged and rapid. The EMTs arrived, checked him out, and tried to insert an IV (which he fought off, even in his semi-conscious state).  Then they placed him on a gurney and wheeled him out to the ambulance.

I rode in the back with Neil and Adam rode up front. The EMT in the back asked Neil questions and he answered them. Later he would tell me that he had no memory of the ambulance ride or the first two hours in the hospital, even though he was conscious and speaking. I sat there behind my son as he spelled his name in the ambulance, berating myself for yelling about the banging when he was having a seizure. Of course, there would have to be some element of the experience for which I would feel guilt. How long had the seizure gone on before his legs got stuck under the table? Why was my first inclination to yell about it?

Three hours later, everything checked out clean at the hospital (the brilliant ER doctor said that because the CT scan was clear, he might not have had a seizure. Um, yeah, he really did. Guess you had to be there, eh, doc?), and after waiting almost an hour post-discharge for a cab, we arrived home past 2:00 AM. I put the boys to bed and tried for at least an hour to fall asleep, but each time I heard a noise (usually because of the cats), I jumped out of bed and went to check on Neil.  My mind kept fixating on questions I had about seizures and how they would affect Neil’s life. What does this mean for his future? What if he has one while riding his bike? Or in the shower? Where do we go from here?

I woke up exhausted and called the doctor’s office. His regular doctor was not in, so we saw another doctor in the practice who recommended a referral for an EEG and MRI. But, with Neil moving to L.A. next week, there’s no point in receiving a referral here. We’re on our own to find one there as quickly as possible.

Except we’re not on our own. We’re part of this amazing and wonderful online community of families with special needs. So I contacted Elizabeth. And not only did she answer my questions and recommend her daughter’s specialist, she calmed my fears and provided empathy. And I am so grateful. I couldn’t help but remember a post I had written over two years ago about my fear that Neil might develop seizures in his teens. It was only the third post I had written, so it didn’t receive any comments, but in it, I had asked for other parents’ experience and advice about seizures. And now, right when I need it most, I have it. We are truly blessed to be a part of this community.

I still have many questions, most of which we won’t know the answers to until the testing is done, and even then, the results may be inconclusive. I still have a lot of anxiety. My legs are still sore from being so tense during the whole experience that night. I still have fears, but I’m trying not to focus on them. I’m trying to focus on the good and move forward, knowing that we’re not on our own.

Cowboy & Wills: A Review

Well, I finally read it – Cowboy & Wills. I’d put it off long enough. Not because I didn’t want to read it, but because I knew it would hit close to home. And some of that stuff is hard to relive. By “stuff,” I mean the younger years – when you can’t leave the house because your child’s sensory issues are so severe. The overwhelming years of constantly going to therapy and doctor appointments and special education team meetings. The difficulty of dealing with ignorant people. It was all there. But there was more “stuff” there that I hadn’t even realized.

Cowboy & Wills, by Monica Holloway, is the touching memoir of a boy who has autism and his dog. When Holloway’s son, Wills, is diagnosed with autism, she finds comfort by acquiring various pets – fish, hamsters, hermit crabs, a turtle, a rabbit. I laughed aloud reading her descriptions of their antics! Before long, Wills indicates his desire for a dog, and Holloway starts researching. Cowboy makes her appearance, and the miracles start happening. Wills begins sleeping in his own bed (with Cowboy), becomes more comfortable and sociable at school and with new people, starts swimming in the backyard pool, and even says his first “I love you.” All because of Cowboy. It’s a book that’s both sweet and funny, sad and happy, and all about love and hope.

But for me, it was more than just a good read. It struck a chord with me in a way that I never expected. In a scene when Holloway is taking her son to his first OT appointment, out of the blue he asks her, “What’s wrong with me?” He asks it in the same way and at the same age that my son asked me the exact same question. It threw me back to that heartbreaking moment, back to being shocked that he could formulate the words to ask and trying in a split second to figure out how to answer him. But it was also the moment of my calling – when I first decided that I would write about autism. It was good to be reminded of that.

I cried at the ending, of course, but at some point I realized that I was also crying about something else. It finally dawned on me that I never acknowledged my feelings and my fears all those years ago when my own son was diagnosed. I just accepted it and got down to the business and busyness of pursuing his therapies and just getting through the day. I suppose it was mainly because I also had a second child with special needs and didn’t have the time or energy to pay attention to my own emotions. It’s amazing how you can shove those things down for so long and then they just surface at unexpected times, sometimes years later.  It was definitely something I needed, without even realizing it. A lovely story and on-the-fly therapy – together in one good book!

What Really Matters

Christmas ’08: my sister (and nephew on-the-way!), brother-in-law, Neil, me, my grandmother, my two aunts, and my mom. Photography by Adam!

~

This isn’t the first time I’ve moved out of state. And it’s not the first time I’ve had to downsize either. But something about this time is so daunting that I haven’t even begun to pack. The boys are leaving in less than two weeks to be with their dad in Los Angeles, and I’m leaving in less than two months to move to Not-Sure-Yet. Now that Neil won’t be able to go to the special school we wanted him to attend (at least not in the foreseeable future), I have to get to L.A. sooner than originally planned so that I can get him set up at his new school, which is called Not-Sure-Yet High. At least we have it narrowed down to a couple, and the one we choose will of course determine where I get an apartment. Yes, that’s right – apartment. I haven’t lived in an apartment for ten years. The boys were much smaller then and had fewer things! And I’m downsizing a four-bedroom house into a two-bedroom apartment. That should be fun. Time for creative packing! Ever played the “I don’t know, honey, it must have gotten lost in the move” game? And no, the house hasn’t sold yet. This – this planning and packing and changing our lives – is truly an exercise in belief.

So, due to our impending move, for the past few weeks the boys and I have been the honored recipients of various invitations for get-togethers, barbeques, and goodbye parties. Last month, we had lunch with my 92-year-old grandmother, the boys’ only living great-grandparent. Last weekend, we went with my mom, sister and brother-in-law, and my little nephew to our spot on the coast where we’ve been going every year for nine years. It’s been bittersweet, of course. On the one hand, I am excited to get going, to get a move on (ha! So that’s where he gets it!) and finish the process I’d begun six months ago, when we were fogged in all day at our local airport and I said, That’s it! I’m done! This was also after an extremely cold December, complete with daytime temperatures in single digits, which I’d never experienced in my twenty years of living in southern Oregon. But it wasn’t just the weather, of course. It was a combination of factors, all of which carried far more weight than the weather. And it’s time for those factors to change. On the other hand, it’s so hard to leave our life here behind, and the people in it.

Last night, the boys had their long-time friends over for one last sleepover. I bought two huge pizzas, soda, ice cream, chips, and stuff for homemade waffles in the morning. The boys walked through my front door, all of them now much taller than I am, greeted me in their deep voices, and loped out to our game room, where we’ve had sleepovers for the past seven years. I have watched these little boys become young men!!  (Okay, must not cry on the keyboard now.) And such wonderful young men they are. These friends of Neil’s have stuck by him through unnerving meltdowns and endless movie echolalia. They were there for him when I had to homeschool him and they were there for him when he returned to regular school. They have given him the gift that every person needs and deserves – friendship. Words cannot express my gratitude. I love these boys.

There are more goodbye parties to come – Tuesday at Boy Scouts and next week at Neil’s special education classroom. Neil’s Scoutmaster, who’s known him for over six years, has more patience than anyone I’ve ever met, and Neil’s special education teacher has put forth every effort to meet his needs, just in the nine months that she’s known him. The facilitator of his social skills class, who has known him since his non-verbal days, actually created the class two years ago just for him. Just for my son, because that’s what he needed. And there are so many others. I sit here tallying up all the people who have touched our lives, who have shown so much kindness to us, even those online whom we have not yet met. It overwhelms me, this downpour of love. We have been truly blessed.

The best part is that, in thinking of all the wonderful friends and family members we will miss, I have been reminded of what’s really important. It’s the people in our lives. It’s not where I’ll live, where I’ll work, where my kids will go to school, and making sure that everything is planned, that we know where every step takes us. The Not-Sure-Yets will become certainties soon enough. The packing will get done when needed. Somehow it all works out. What really matters is how we love, and how we are loved. We will go forward into our new environment surrounded by the warmth of those who have cared for us, and will continue to from across the miles. And I’m certain that their warmth – their love – will see us through.

Slip: An Interview

As some of you already know, Carrie Wilson Link often interviews authors about their books and the personal experiences behind them. She always asks thought-provoking questions that reveal more about the authors than we would otherwise know. As an avid book reader, I’ve always loved her interviews. And I’m thrilled to announce that I am today’s interviewee! Carrie asked some probing questions about Slip, my novel that was recently published, and how my personal experience fits in with both the subject matter and the writing of it. I feel honored to have been interviewed by her, and I invite you to take a look by clicking here. Enjoy! And thank you, Carrie!

Pun and Games

The Scene:  Sunny but cool day on the Oregon coast. Waves crash on the shore, birds call as they fly overhead, and a few people walk by with their dogs. A small waterfall rushes out of a fern-covered hill at the back of the beach. The water gurgles over a rocky area and forms a little creek that meanders out to the sea. Two teenage boys and their uncle are building a dam out of logs, dried grass, and sand. Nearby, a woman watches as she reclines against a large driftwood log and enjoys the sun.  She is glad that the boys are outside instead of sitting around in the cabin they had rented for the weekend, watching more DVDs than most people could watch in a fortnight. The dam is working; a pond forms as the water collects, and the older teen boy stands in it while pouring sand out of a bucket.

Teen boy (calm, even voice):  This water is damn cold.

The woman, his mother, thinks it is probably a line from one of the movies he had watched the previous night  – The Abyss – which involves a lot of cold water. Her son repeats the line a few times, and the mother realizes that he is most likely expecting a response from her.

Teen boy (fourth time, in same tone): This water is damn cold.

Mother: Yes, I’m sure it’s pretty cold.

Teen boy (same tone as before): This water is damn cold [gestures to the dam wall, then smirks]. Get it? ‘Dam cold’?

Believe

I just finished reading an amazing book called Fearless Nest: Our Children As Our Greatest Teachers. So many of the beautiful stories in the collection resonated with me. And one thing the book really has going for it is that my friend Carrie is one of the contributors! In addition to that, it got me thinking about what I have learned from my children. What I’ve learned from Adam deserves a post of its own, but for today, I’ll write about what I’ve learned from Neil.

It’s the power of belief.

But I’m not just talking about the belief I have in his potential, or that he would learn to talk, that he could be mainstreamed in school, that he would learn to regulate his behavior. All of that involved a tremendous amount of belief, and, for that matter, it still does. Because I truly believe, in spite of all his challenges both past and present, that he will be able to navigate adulthood with some degree of independence. Most of all, I believe he will find people who will appreciate him, and he will have friends and be happy. Even if his connections aren’t typical, I believe this with all my heart.

And I believe that he will follow his dreams in adulthood, because he already does. Since his early years he has been a huge Disney fan. He loves the characters so much that he thinks of them as friends. In fact, his stuffed Tigger prompted him to speak one of his first words and start showing some imaginative play. These days, he owns almost all of the Disney movies, animated and live-action, the older ones as well as the newer ones with Pixar, and he rotates watching them. These movies have taught him how to talk, how to interact with people, and how to tell a story, among many other skills. But mostly, they comfort and entertain him. They are a big part of his life and he loves them.

For a few years now, he has talked about a movie idea he has that combines all of his favorite animated Disney characters. I’m not clear on the plot details, but it involves him becoming an animated character and going into their world (a la Roger Rabbit, I suppose) to help save them from a new Disney villain, worse than all the Disney villains combined. A few weeks ago, he wrote a letter to the Disney Corporation outlining the plot and asking if they would be interested in his story idea for a future film. He typed it on his computer, printed it out, folded it up, put it in a #10 envelope, and addressed it by hand, which is no small feat with his dysgraphia. He sealed the envelope and came to ask me for a stamp. I mailed it the next day, not knowing what he had written, but hoping that it was coherent enough for them to at least send him a form letter thanking him for his interest. I told him that the Disney Corporation probably receives hundreds of pieces of mail daily and that it might take several weeks before he received a reply, if any. I tried to let him down easy, gently prepare him for disappointment.

But he believed.

My boy believed so strongly that he would receive a reply within two weeks. After the first week, he said to me, “It’s been a week now. My response from Disney should be arriving soon. Let me know when it comes in the mail, okay?” And I again reminded him that Disney may not be able to answer every letter they receive, etc. Still he believed. And I suppose I should not have been at all surprised when, on day eleven, a letter arrived from the Disney Corporation addressed to my son. He was shaking as he opened it, saying, “I knew they would reply!” And they did, within the timeframe that he believed they would. It was such a generous response – not a form letter at all. The kind soul who had opened my son’s letter had taken the time to write a personal response. She told him that they would probably be interested in his idea (he loved that part!), but diplomatically – gently – explained that due to legal restrictions, they could not pursue it. And Neil handled it very well. He said that he understood and was okay with it. He got his response, addressed to him on Disney letterhead, and that was enough for now. His belief came to fruition.

And what do I believe? As we go forward with our out-of-state moving plans, I find myself faced with several huge unknowns, especially now that Neil won’t be attending the special school we’d hoped for, at least not for a while. I don’t know where the boys will go to school. I don’t know when my house will sell. I don’t know where we’ll be living. I don’t know what job I’ll have. There is so much I don’t know. But Neil has taught me to believe. And I believe that everything will work out as it should. I believe that all of our needs will be met. I believe that all that I seek is seeking me. I believe that all will be well. And that is enough for now.

A Second Thought

The Scene:  A mother is driving home from work. After eleven miles, she is back in her town, and remembers that she had driven her older son to school that morning instead of having him ride his bike because it had been raining heavily.  She turns around, goes back to the high school, and pulls up to the curb in front just as her son, who is already outside,  starts looking around for her. He gets in and the mother starts driving home. Then she remembers that she needs to go to the post office to check the mail, since they do not have mail delivery to their home, and she turns around and drives back towards the post office. She parks and gets out of the car while her son waits in the passenger seat. She goes in the building, opens and looks in the box, and there is nothing there. Realizing that now she is late getting home to let her other son, the bus-rider, in the house and that he is probably waiting in the rain, she jogs back to the car and gets in.

Mother: Well, that was a waste of time.

Son: No mail today?

Mother (backing out of the parking space): Nope.

Son: You should have made it a second thought.

Mother (pulling out of the parking lot): A what?

Son: You should’ve made getting the mail a second thought.

Mother (pauses as she turns onto the main street, somewhat flustered): I don’t know what you mean by “second thought.”

Son: You know how you people are always saying things like, “On second thought, maybe I won’t . . . go to the post office.”

 

Image credit:  Young Tran

Some Good

Like most people, when I was in school (mostly college), I dreaded exams. I much preferred those classes in which the final exam was a paper or a project. Because as much as I could prepare for exams – researching, studying, memorizing – it gave me such anxiety knowing that I would have to retrieve all of that information in a limited amount of time and use it to prove that I knew what I was talking about. So much was riding on it, and I usually doubted how well I would do.

Yesterday, we had a very important IEP meeting for my son who has autism and is now in high school. He requires constant assistance to start, work on, and complete assignments at the public school where he is mainstreamed with extensive support. While we are very fortunate to have that support, I do not want his potential limited by a modified diploma. He needs to be taught to work independently, and I don’t see how that could happen in his current placement. We found a school that specializes in teaching ASD students, and he has attended summer camp programs there. I asked his current school to change his IEP to reflect that his academic needs would be better met in the special program.   

I prepared for this meeting for two weeks. I researched online, I consulted other special-needs parents, and I printed out e-mails from my son’s special education teacher that I had saved over the course of the school year, mentioning various times that she’d had trouble getting him to do the work, and in which she was asking me for advice. I built a case showing that although I appreciate the support that my son receives, his academic needs were clearly not being met. I practiced my main arguments in my head for days. I threw all of my energy – mental, emotional, and physical – into my preparation. I meditated. I prayed. I tried not to lose sleep. I did everything I could.

But this was one exam that I could not pass. From the moment I sat down at that huge, intimidating table, the district special education coordinator controlled the meeting. She knew how it was going to go. She was diplomatic and acted sincere, but she did her job for the school district. No matter how convincing my arguments, no matter how irrefutable my evidence, no matter how much I stuck to the facts and did not let my emotions surface, she did not waver. It didn’t matter what I’d said or how many e-mails I produced. I felt railroaded. We never had a chance.

I left the building and the tears immediately streamed down my face. I couldn’t even make it out to my car first. I was not completely surprised at the outcome of the meeting, but still, I had hoped. And it was quite a blow. I know that I could hire a special education attorney and take the district to court. I know that we have a good case. But I also know that there’s only so much I can take. I’m supposedly so “strong;” I’ve been told that many times over the years. But I’m not. I’m tired. I’m vulnerable. And I’m not going to fight that fight.

But I will continue to work for what’s best for my son, even if it turns out to be something different than what I’d thought would be best. When I tell Neil, after I’d come home, that the district would not approve transferring him to the special school that he wanted to attend, at first he’s angry. “We need to call the authorities!” he proclaims. But after a few minutes, after he feels my calmness and acceptance, and after we talk about our alternatives, he sighs and goes back to the cartoon he had been watching. I walk out to the kitchen to begin making dinner.

I think about the huge changes that my son – that all of us – will be facing very soon as we move seven hundred miles away to be near the special school in Los Angeles. His father lives there, and my two sons have spent the past eight summers there. They’ll go to the local public school, and we’ll just keep working to get Neil in the one we want him to attend. But I’m open to the possibility that maybe something else will come up in L.A., some other opportunity that will turn out to be even better for him. Something we hadn’t even thought of. After the meeting, walking out to the car, I felt so disappointed in myself because I knew that I wasn’t going to fight the school district. I felt like I was just giving up. But now I see it differently. It’s not surrender; it’s hope. Hope for something better.

A few minutes later, as if he picked up on my thoughts, Neil walks through the doorway of the kitchen, stands there for a moment, and says, “Maybe some good will come of it.” It was most likely a line from a movie. But it couldn’t have been better said. I put my arm around his waist and pat his back and tell him Yes, honey. I’m sure of it.

Please

We all have dreams for our children. Autism doesn’t take away our dreams – it only changes them according to our child’s abilities. And so, we still dream.

My dreams for Neil have certainly changed over the years, but I still have them. And so does he. Some of those dreams have come to include the possibility of a post-secondary education, which seems out of reach given his academic challenges and the lack of local resources to address those challenges. So, we found a resource – a special school – that can teach him the skills he needs to be able to work independently, and I foolishly believed that all I needed to do was fill out a bunch of paperwork and enroll him.

I had no idea that the administration at his current school might not agree that this is something that he needs. I had no idea that they would be reluctant to change his IEP to reflect that his academic needs would be better met in a non-public school setting. I had no idea that the minor hoops I envisioned jumping through would turn into major hurdles.

The special school we would like Nigel to attend costs more per year than my entire college education did. Even when I sell my house I will not be able to pay the tuition out of pocket. However, we can receive funding if the change is made to his IEP, if it designates that his needs would be better met in a non-public school. I approached the special education coordinator at Neil’s current school, and she discussed it with the district sped coordinator. They declined our request, stating that Neil has made progress and “is capable with supports to maintain grades.” We have an IEP meeting scheduled next week to discuss this further. Neil’s father, who lives 700 miles away, will attend via conference call.

Yes, Neil has grown. He has come so far. But the fact is that the progress he has made has been behavioral and social. And while this is indeed wonderful, his academic needs are not being addressed. The grades that he “maintains” are heavily modified. The teachers do not even assign him homework! He can barely complete the class assignments, even with constant assistance. I know that they like him and care about him, but it appears that they are just pushing him through. If he cannot work independently, he will not be able to attend college. It’s wonderful that he receives so much academic support; the special education coordinator helps him every day to do his work. But he needs to learn the necessary executive function skills to be able to do it on his own, and I don’t expect him to learn that in a public school setting.

I know that some of the professionals who have worked with my son have read this blog before and might be reading this post. I really hope that they do. Because I want to say this to them:  Please. Please think of Neil’s academic needs. Please think of the dreams that he has. Please give him the opportunity to utilize the best academic resource that is available. He needs more specialized instruction than what you are able to provide. I do not fault you for this, especially since he is only the fourth ASD student to attend your school. I truly appreciate all that you have done for my son. Please just do this one last thing for him. Please.

Motherhood

I never thought it would be like this . . .

That my child would cry so much for so long

Or have great difficulty in learning to talk

That one would shriek and writhe on the floor because someone flushed a toilet or turned on a coffee grinder

And the other would only eat four foods and couldn’t learn to ride a bike

I never thought that my children would have special needs

That I would be a single parent

That I would have to attend so many meetings and therapy appointments

That I would have to mastermind my son’s education

That I would be forced to homeschool him for eighteen months

I never thought that my older son would wander and get lost

And that my younger son would have to help look for his older brother

Or that I would still grieve whenever I heard young children who could talk . . .

I never thought my heart could be so full

*

I never thought it would be like this . . .

That one child would learn to read at age three and the other at age nine

That the one who lacked imaginative play would someday love fiction

And the other, who couldn’t hold a pencil, would become an artist

I never thought it would be so monumental to take a nine-year-old into a grocery store without a sensory meltdown

Or that a fifteen-year-old’s first unprompted ‘thank you’ would be so gratifying

I never thought that one son could play on a team sport, attend a concert, or enjoy the theater

Or that the other son would design his own video games and become a voracious reader

I never thought anything could give me as much peace as when they get home safely each day

That there would be so many “little” things to celebrate

Or that through my sons I would meet such wonderful friends of my own

I never thought that the emergence of voice inflection would be such an unexpected gift

Or that I would weep with joy when my son made a new friend . . .

I never thought my heart could be so full