Tag Archives: spd

The Funk

Silver Falls State Park, OR

When I was in college, my roommates and I hosted a P-Funk party that people still talk about. We dressed up and wore wigs. We played records (yes, records) and really got down. But that’s not the kind of funk I’m into now. A few months ago, my two teen boys invited some friends over (more teen boys) for a sleepover, and the next morning, as they slept and I walked into the game room to survey the damage (almost as wild as my P-Funk party), I was hit with a wall of funk. Teenage-boy funk. Sweat, dirty socks, and (um, how to put this delicately?) expelled-air kind of funk.

But that’s not the kind of funk I’m in now. You know the kind, I’m sure – things are going mostly okay, you’re working, taking care of the kids and the household, but something doesn’t feel right. And in spite of all that’s good in your life, in spite of counting your blessings, it’s still hard. Right – nobody said life was supposed to be easy. But is it supposed to be hard?

No, I tell myself. I’m just in a funk. I’m at a crossroads with my finished-but-still-unpublished book, unfulfilled with my day job, feeling like I’m between treading water and sometimes barely keeping my head above it. So when Nigel, who turns 15 next week, told me last night that his case manager at school said to ask me if he’s going to be getting his driver’s permit (what?!), I felt like I’d been hit by a wall of water.

I didn’t know this was coming, although really, I did. I just didn’t know it would be this week. But what shocks me more is that I was just talking about this with my good friend Carrie less than a week ago. (Got Carrie? If not, head on over there immediately. You’ll be glad you did.) I was telling her how I didn’t know how to tell my son that he’s not ready to drive yet, in spite of how much he wants to. I told her how I’ve been putting it off, not sure how to approach it, foolishly thinking I still had some time. And then, something amazing happened, as it usually does when we’re with someone who listens and understands. Out of my mouth tumbled, “Maybe he just needs to hear it from me” or something along those lines. And I knew that I had to have the talk with him soon. I just didn’t get it together quick enough. So, I copped out. Last night, as I had three different dinners cooking at once while he stood there expectantly, I said, “Maybe in a few months.” I just couldn’t do it right then.

Because last night my other son needed me more. Last night Aidan was still recuperating from a vaccine reaction. Yes, I said it. I’m going there. He had his 13-year physical two days ago (a couple months late, but oh well), and the nurse spouted off at least four different vaccinations or boosters that he “needed.” We decided to go with one – the meningitis. It was the one that I felt strongest about, so we took it. Then I dropped him back off at school and I went back to work. In less than an hour, Aidan told me later, his arm was numb, and he had a headache and abdominal pains. My poor sweet boy didn’t want to disturb me at work, so he suffered through it at school and told me when he got home. He slept badly that night, still experiencing the same problems. He stayed home from school the next day, and by that evening (last night), he was feeling better (although his arm still felt strange).

I went in Aidan’s room to talk to him before he went to sleep, as I do every night. I’d had an epiphany, and I wanted to share it with him. My younger son has sensory processing disorder – gustatory, olfactory, tactile, proprioceptive, and vestibular (worse than Nigel in all of these areas). And when Aidan was a baby, he cried almost constantly – but it didn’t start until he was two months old. That was when he received his first round of what turned out to be no less than 16 vaccinations by the age of 18 months. (By comparison, I’d received 6 vaccinations by the time I was 18 months. I guess I should consider myself lucky to be alive, as undervaccinated as I was.)  Aidan knows that he was a crier. He’s heard the war stories. But, as I told him last night, now we know why. I think that it took months for his little body to assimilate the vaccines, and by the time he got through one round, it was time for another, and then another. His body was flooded, overwhelmed. And I believe that experience contributed to his sensory processing disorder.

Maybe I’m reaching. Maybe it’s my funk. I don’t think vaccines are bad. But once I made that connection with Aidan’s babyhood, I felt like I’d solved a 13-year mystery. And Aidan agreed with me; both of us achieved some closure. As I left his room, I blew him kisses from the doorway, as I do every night. Often he blows them back to me. Last night, I shut the door and stood in the hallway a moment. I heard him continue to blow kisses to me even after the door was shut.

I can only hope that when I approach Nigel about the driving issue that I can word it in such a way that he can understand.  I don’t want him to see it as a punishment, as a wall of water crashing down on him. I hope that what I discussed with Carrie turns out to be right – that he just needs me to tell him. Maybe once I talk with him and get it all out on the table, I’ll feel better. Free, even. Free of the funk.  

My Undiagnosed PTSD

I have read and heard it said that we all have sensory issues to some degree. Whether you cut the tags out of your clothing, get a headache from fluorescent lights, cringe at the sound of a drill, or even still get carsick, you’re exhibiting a mild symptom of SPD.

But sometimes it’s not so mild. Sometimes your senses of taste, smell, and tactile processing are so affected that you can only eat a few foods. Sometimes your hearing is so sensitive that it’s difficult for you to be in a classroom and filter everyone else’s sounds – chairs scraping, pencils writing, kids talking, teachers raising their voices, bells ringing. And forget trying to function if the fire alarm goes off. Forget being able to filter a blender, drill, leaf blower, or air hand drier in a restroom. It’s enough to make you scream. And quite often, because you can’t talk and even if you knew how to cover your ears, it wouldn’t be enough, you scream. You scream and you run. And if you can’t run, you writhe on the floor, screaming in agony.

And if you’re a parent of a child who does that, you become ultra-aware of your child’s triggers, or possible triggers. This is just one of the many reasons why recent studies (sorry -can’t seem to find the link right now) have indicated that some parents of children with autism have PTSD, from years of being hyper-vigilant, stressed, and exhausted, among other reasons. You try to second-guess every situation. You instantly notice the echo-effect or noise level of every environment and hope that your child is okay with it. You cringe when you hear a loud mechanical noise. You still check for air hand driers every time you enter a restroom, even if your child is not with you.

In many cases, as the child gets older, they learn how to filter the sounds that used to be so agonizing to them. Sometimes, they get to a point where they only have to briefly plug their ears if a sound bothers them, instead of screaming and bolting in a panic. There is a huge reprieve as the parents feel safe to go out in public again.

But some parents – and I am one of them – are still affected by the experience of having a child who screamed and bolted and writhed on the floor. Even though my son is almost fifteen and it’s been several years since he reacted violently to a sensory issue, and even though I consciously know that he is fine now and would probably not have those reactions again, I still have these subconscious fears. Or maybe they’re psychosomatic sensory issues. When we are in public and a mechanical device or appliance goes off, it’s a trigger for me. Every sound is magnified. I almost break into a cold sweat. My adrenaline starts pumping and my pulse quickens. I become hyper-alert; I instantly look at my son. Often times, the sound doesn’t appear to have fazed him. Or, if he noticed it, he merely covered his ears. Sometimes he might make a comment like “That was pretty loud.” But that’s it. He no longer screams or bolts, and he hasn’t for a long time.  

On some level, it’s like when I was in college and waited tables for my job. For years afterward, whenever I went out to eat at a restaurant, I couldn’t relax. I was constantly aware of the wait staff, how many tables they had, how they hurried. I would feel nervous when I would see food sitting in the pass-through window, waiting to be brought out to the tables, like I should get up and do it. If someone dropped or broke something, my adrenaline would race through me. For years, even after I no longer waited tables, I didn’t go out to eat much because I just couldn’t enjoy myself.

It’s been about sixteen years since I waited tables. And about a year ago, I was out a restaurant, and I noticed that I was relaxed. I wasn’t watching the wait staff. I wasn’t aware of the food coming out. I didn’t think about timing. I didn’t flinch when somebody dropped something. I realized that I was enjoying myself. So. Fifteen years. Fifteen years to get over the “trauma” of waiting tables for four years.

I don’t remember the last time that my son reacted violently to a sensory issue. I remember many of the individual instances, but not all. I’m sure that the times I’ve forgotten are those that I’ve mentally blocked, as a defense mechanism. But I can guess that it’s been about five or six years since we’ve dealt with a sensory meltdown. Since then, we’ve had meltdowns for other reasons, of course, but not sensory-related. So if my track record holds, I’ll need another nine or ten years to get over the experience of having a screaming/bolting/writhing child.

And while I know that this is nothing compared to the PTSD inflicted on many of those who serve our country, it is difficult for me. Time does heal. I just wish there was something I could do in the meantime.  

When Eating is Difficult

Thanksgiving always poses a problem for those who are orally defensive. And although sensory processing disorder occurs simultaneously with many ASD individuals, it also occurs in those who do not have autism. My non-autistic younger son, Aidan, is highly orally defensive, and has been since infancy. It was so bad that sometimes while breastfeeding, if the milk tasted differently to him, he would scream and act as if I were trying to feed him motor oil. It was not fun for either of us.

The term “picky eater” does not seem to be the most fitting for Aidan, now twelve years old. Nigel, my autistic son, I would describe as a “very picky eater.” Aidan I would describe as a “limited eater.” Whereas Nigel will choose from an array of five acceptable breakfast items, Aidan will eat one (cold cereal and milk, alternating between two types of cereal, and that has only been a very recent development). Nigel will eat any of 12 choices for lunch and dinner, and Aidan is limited to five, and there are limitations even within those five.

He does not eat sandwiches. No macaroni and cheese. In fact, no cheese at all. He’ll eat pizza, but only after he peels off the cheese. No waffles, no oatmeal, no eggs, no CAKE even. For his birthday, he has cinnamon rolls.

I used to fight him on this. I recall when he was four years old that I gave him a tiny piece of lettuce and he refused to eat it, of course. So I sat on the kitchen floor with him and held him and put the piece of lettuce in his mouth and forced him to eat it. And I swore I would never force him to eat anything again.  I tried making bargains with him, I tried letting him go hungry until he would eat what was on the table. I tried reward charts. I tried grounding. Nothing worked.

In fact, the only thing that has worked is respecting his oral defensiveness. Respecting the fact that he has a hard time eating in the first place, and he only weighs 78 pounds, and “letting him go hungry” is the worst possible thing I could do because then his stomach would shrink further, making it even more difficult for him to eat the next time he tries. There are compelling reasons why he won’t or can’t eat many foods, and the best thing I can do is accept it and work with it.

And so, tomorrow, when we go to my mom’s for Thanksgiving as we do every year, we will bring Aidan’s certain brand of turkey hot dogs that he eats. And the raw baby carrots, the only vegetable he will eat. And he’ll sit at the table with the rest of us, and everyone understands (after some years of fruitless cajoling) that he will only eat what he eats. And we’re all a lot happier for it.

First Days and Sensory Processing Disorder

First days of school are nerve-wracking for lots of people, but especially for those with Sensory Processing Disorder. Most ASD people have some type of SPD (or several), but there are also many people with SPD who do not have autism. Aidan is one of them.

In the beginning, of course, I did not know this, but early on I thought he might have something I read about called “low sensory threshold.” He cried when I held him, he cried when I put him down, he cried in the baby swing, he cried in the car, he cried in stores, and he cried at home. He cried about 80% of his waking life. I did not know what to do for this child. The crying was so extreme that it prompted his two-year-old autistic brother to speak one of his first words: “cying.” He was trying to say “crying” but couldn’t get the “r” sound. “Yes, Aidan is crying,” I would tell Nigel.

Aidan was about one and a half when Nigel was diagnosed with autism. At the time, I thought about the fact that Aidan was also not making any attempts to talk and had very sensitive hearing, like Nigel. I wondered if Aidan also had autism. There were many who suggested that Aidan was simply mimicking his older brother, but the signs were there even when Nigel was elsewhere. Nigel’s autism was more on the severe side as a young child, fairly obvious once diagnosed, so if Aidan did have some level of autism, I thought it might have been PDD-NOS. Trying to be objective, I looked at the differences in my sons’ behavior. Aidan made eye contact. He knew how to play with toys. He did not stim. He was just always crabby about something. So PDD-NOS did not seem correct. But what, then?

When Aidan was three years old I was able to enroll him in the same early intervention program that had been so beneficial for Nigel. The therapists evaluated Aidan and informed me that he had problems with sensory integration (SPD hadn’t been coined at the time) and a developmental delay in language. They provided OT and speech therapy, which seemed to help him. But it wasn’t until he was five that Aidan seemed to tolerate his body and his surroundings better. He finally seemed happy.

Aidan continued to receive speech therapy until he was almost ten, and I could tell he was glad when that was behind him. He is now IEP-free (yes, I did the happy dance when I left the last meeting, because now I only have one child with an IEP) and does quite well in spite of the fact that he is the pickiest eater in all of southern Oregon (at least) and hates wearing shoes because “they smash my feet.” He constantly complains about smells that no one else smells, he wears the same clothes for days on end because they’re the only ones he feels comfortable in, can’t stand having his hair brushed, gets carsick, and won’t tie shoelaces or ride a bike. But at least he no longer cries 80% of the day!

And so I was a bit concerned about Aidan’s first day at a new school. School in general can be a pain for SPD kids due to the potential for sensory overload. I drove Aidan this morning so he wouldn’t have to “process” the bus yet, and I think that helped to ease him into the first day. He said the lockers aren’t so bad, and he assured me that he didn’t buy anything at the vending machines. He didn’t get lost, and he got on the right bus to come home. Best of all, he didn’t get carsick!

 

Added 9/13/08: an informative SPD site – click here