Category Archives: Health & Safety

Protocol

Apparently when I wrote my last post and mentioned something about not getting any of the dreaded phone calls from Nigel’s school yet, I neglected to – you know – knock on some wood. Because the very next day, the second day of school, I had been sitting there at work for merely an hour when the phone rang, and when I saw “school” pop up on the caller ID, I really couldn’t believe it. Already? Aw, hell.

Upon closer, split-second inspection, I discovered that it was coming from Aidan’s school, and I relaxed a little. But only a little. Because when Aidan’s school calls, it’s usually because he’s sick, and I still wind up having to leave work to go pick up a child from school. He seemed fine when he left the house an hour ago! I sighed and picked up the phone, resigned to my fate.

But the call wasn’t about Aidan. It was the school district’s main nurse, who happened to be at Aidan’s school that day. And she was calling about Nigel and his seizure protocol. My heart started thudding as soon as she said it.

Some of you may recall back in June when Nigel had his first major seizure. It was horrible and scary, as they all are, but when the smoke cleared and I had done some research, I was able to identify what might have triggered it, and thus learned how he could possibly avoid future episodes. Nigel stayed with his father for several weeks over the summer, and he made sure to refrain from watching movies in the dark, especially those with flashing lights. He is also learning to employ some stress-reduction techniques, since he was under a lot of cumulative stress at the time that the seizure occurred, and that most likely made him susceptible to it. And (as I make sure to knock on my wooden desk), the great news is that he has not experienced any more seizure activity at this point (that we know of).

But because he had that seizure, the school district requires there to be a seizure protocol on file in case he has a seizure at school. And I’m glad that they require it, of course. It’s a signed document that his teachers must be aware of in the event that he has a seizure in their classroom, so that they know what to do. It’s necessary, it’s important, but it’s unwelcome. Of course, I’m glad that there is a seizure protocol in place, and I approve it, but I wish it didn’t have to exist. I wish my son hadn’t had a seizure. I wish I didn’t have to worry every day about him riding his bike to and from school and having a seizure on his bike. It’s hard enough already. Everything he deals with is hard enough. And now this.

Like it or not, this is our reality. This is the “what now?” mentioned in the heading of this website. This is the latest thorn that has found its way to my side. One more worry in a long chain of fears. And I will just have to face it, like I do everything else. The seizure protocol came home today for me to sign, and we have an appointment next week with his doctor to see if she wants to schedule any more tests. If she does, we’ll do them, of course. But part of me wishes I could just bury my head in the sand. And all of me wishes that knocking on wood would be enough to keep the electrical activity at bay forever.

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 my friend Elizabeth’s beautiful post that the only child I’d witnessed having a seizure was not my own.

A few days ago, Nigel had his first tonic-clonic (formerly 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 Nigel, 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 Nigel’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 Aidan to call 911 and bring me the phone. The dispatcher kept me calm while waiting for the ambulance to arrive. Nigel’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 Nigel and Aidan rode up front. The EMT in the back asked Nigel 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 Nigel.  My mind kept fixating on questions I had about seizures and how they would affect Nigel’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 Nigel 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 Nigel 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.

Autism Safety & Risk Management, Part 4

During Dennis Debbaubt’s seminars for training law enforcement and emergency services personnel, the first thing he tells them about encountering an ASD individual in the field is to expect the unexpected. He teaches them about the various behaviors they might see, the communication difficulties they might encounter, and the best ways they might handle those situations. He discusses the sensory issues and anxieties that ASD individuals can have. He stresses that each ASD individual is exactly that – an individual. They are similar in some ways but by no means all alike.

And so, since we parents know how true that is, it’s up to us to use the tools that we know will help our individual children best. We have many resources available to us, but they do no good if we do not utilize them to prepare for emergency situations, not just react to them. With that in mind, I would like to remind you of the links for resources listed in Autism Safety & Risk Mangement, Part 2, including ASA’s Safe & Sound program, safety videos, MedicAlert bracelets, shoe tags, non-permanent tattoos, Project Lifesaver, and personal GPS tracking systems. In my previous post, I mentioned disclosure with neighbors, writing “social safety” teaching into your child’s IEP, and carrying a handout card. I discovered an excellent source for purchasing handout cards: AutismCards.com. They have numerous designs with different content, so you can look around and choose what would be most effective for your child. Most important, don’t forget to fill out and make copies of the Autism Emergency Information Form. All of these tools are valuable resources; we just need to decide what works best for our children and follow through with our risk and safety management.

Last on the list of resources – but certainly not least – is Dennis. Dennis Debbaubt’s seminars are invaluable for helping your local law enforcement and emergency services personnel learn about autism and how to interact with your ASD child. Unfortunately, in many cases Dennis is asked to come and give his presentations as a result of something that went wrong, such as a wandering autistic teen being tasered by police, or a child who wanders away from school and drowns. And then Dennis is summoned to present his special training seminars – one specifically designed for law enforcement personnel and first responders, and the other for parents, teachers, and caregivers. But we shouldn’t wait until something happens. For our children’s safety and our own peace of mind, we need to be proactive.

So – how do you get Dennis, you ask? Two of the best approaches you could take would be to a) contact your state or local chapter of the Autism Society of America, or b) to contact your local Education Service District. You can also see if the two agencies would be willing to split the cost to host Dennis. However you get him, he’s worth it. I admire Dennis so much for what he does, and I feel fortunate to have met him and learned from him. I can’t tell you how glad I am that he presented his seminars in my area. It is such a relief to know that those in my community who are out there safeguarding my son now have the tools to help him and understand him better. And I’m sure that they’re just as glad to have that knowledge.  

Autism Safety & Risk Management, Part 3

One of the stats that really stood out to me from Dennis Debbaubt’s Autism Risk & Safety Management Seminar that I attended is the fact that ASD people, throughout their lifetimes, have up to seven times more contact with law enforcement than the general population. Add to that figure the fact that there is a deficit of training for interactions with ASD people, and we have a gap that needs to be filled. Dennis Debbaubt’s training seminars help to fill that gap, but what’s equally important is parents’ willingness to disclose information about their child. We all value our privacy – and need it to protect our children. But if you want to upgrade safety, Dennis points out, you have to give up a little privacy.

The first thing you can do in your community to help manage risk is to reach out and get to know your neighbors. It is undeniable that the behaviors and characteristics of autism have the potential to attract attention from the public. By disclosing to your neighbors the fact that your child has autism, you will help avoid problems down the road. Talking with your neighbors about your child will tell them that you are approachable and responsible. Your neighbors will know the reason for any unusual behaviors they might see, and they can notify you first if they see your child taking off clothes outside (Nigel has done this), wandering (this too), or destroying property (um, no comment). Knowing your neighbors can also lead to better social interactions for your ASD child, especially when they are older and people would expect them to be more socially adept. If your neighbors know about your child’s autism, they will usually be more understanding. [Note: Some parents fear that this disclosure would increase their child’s risk for abduction or sexual abuse. Dennis Debbaubt has researched this topic, and for parents who are concerned, he recommends reading Ken Lanning’s booklet, Child Molesters: A Behavioral Analysis, which provides characteristics of pedophiles, among other investigative strategies. It was written as a tool for law enforcement officers and child-protection professionals, but it has helpful information for parents who want to know.]

The next thing you can do in your community is to have risk and safety concerns written into your child’s IEP, if you have not already. At your IEP meeting, discuss with the teachers and therapists what the de-escalation plan is for your child, and what they should do if your child is not able to de-escalate. This should be a mandatory part of all IEPs, so that we don’t continue to read news stories about ASD children and teens being arrested and handcuffed because of a sensory meltdown.  Teachers, aides, and therapists are our children’s primary caregivers when they’re at school – they need plans in place to help care for your individual child the best way possible, especially in difficult situations. Schools can also plan educational opportunities for children to learn to recognize and be comfortable with law enforcement and emergency services personnel out in the community, which will help in an emergency situation. These field trips will also help your local law enforcement and emergency services personnel to become familiar with the ASD children in your community and how best to communicate with them and help them.

Another area of concern that can be addressed at school and written into the IEP is “social safety” teaching. Social stories can be used to teach children and teens about important things like public restroom “etiquette” for their safety, and learning appropriate behavior for stores, hospitals, airports, etc. Equally important is being able to recognize “false friends,” people who will target both verbal and nonverbal ASD individuals because they are vulnerable. Our ASD kids can be tricked into doing inappropriate or unlawful things without their understanding, and when law enforcement arrives on the scene, the ASD individual is left holding the bag. As the parent of a verbal autistic 14-year-old, this is one of my greatest concerns. My son is starting to want to be independent, but he doesn’t have the ability to know when people are using him or to avoid questionable situations. Additionally, if he is walking down the street and sees a broken window or some used fireworks or a dead animal or anything unusual that catches his eye, he will stop to investigate for a lengthy time period, and could easily be blamed for whatever occurred, especially since he avoids eye contact when speaking to people and can “act out” when nervous or under stress, making himself look suspicious or like he’s on drugs.

That brings us to the final topic for things you can do in your community for your child’s safety. We can’t expect police to field-diagnose a person with autism, so we need to have a way to notify them. Dennis recommends that either you, or your semi-independent older child/teen, carry a handout card. The handout card should be typed, approximately the size of a business card, and able to be copied and laminated. It should tell the officers that they are interacting with a person with autism and indicate that the person (your child) will be anxious in new situations with new people, will avoid eye contact, may or may not be able to speak, needs to hear calm, direct language avoiding slang and sarcasm, needs extra time to answer questions and may repeat what is said to them, may rock, pace, or engage in self-stimulatory behavior,  may make inappropriate comments or gestures, may give a false confession, and may display extreme distress such as yelling, crying, or physical agitation. It’s also important to have the handout card mention sensory issues with sound, lights, or touch, or a fear of dogs. It should also suggest removing your child from areas that may aggravate sensory issues and escalate behavior. The card should note if your child is prone to seizures and what the officer should do if one occurs. Most importantly, the card should list contact information for parents, caregivers, therapists, or doctors. If your child or teen is at a point where they are out in the community independently, even for a short time, carrying a handout card is a must. Teach them not to run from police officers, to tell the officer that they have autism or Asperger’s, and to say that they have a medical card to give to the officer, but to wait until the officer tells them it’s okay to get the card before they reach for it.

Learning about handout cards really helped to put my mind at ease with my son being alone in the community more often as he nears adulthood. I’ll always worry – that’s a given – but at least I know that there’s a tool in place that can help him in certain situations. Dennis suggests that handout cards can also be helpful for nonverbal individuals when combined with an ID bracelet. These are simple, effective tools for helping to keep our ASD children safe in our community. Using these tools, along with being willing to disclose information to our neighbors and working with the schools to promote safety awareness, will help to manage risk and give us a little more peace of mind.

Autism Safety & Risk Management, Part 2

Dennis Debbaubt began his Autism Risk & Safety Management Seminar with a powerful analogy: How many people wore their seatbelts on the way to this seminar? How many people just put it on without even thinking about it? We don’t think about the fact that we might get in an accident – we just put it on because it’s part of our daily safety routine, like locking doors and looking both ways. We didn’t arrive at the seminar and say, “Well, that was a waste of time, putting on my seatbelt. I didn’t even get in an accident!” And we’re still going to wear our seatbelts the next time we get in the car. Likewise, managing risk for our children is part of our daily safety routine. We don’t have incidents occurring every day, but we still need to have those risk management efforts in place. And in many cases, there is more that we can be doing, even in our own home.

One of the biggest risks for people with autism is wandering, whether they’re at home or they’re away from home. I’ve experienced this with my own son over the years, and wish that I’d had more knowledge of the things I could have done to prepare for such a situation before it occurred. I still would have panicked all the times it happened, but at least I would have had more of a plan in place. The following are some tips to manage wandering and also address in-home safety issues:

  • Secure the home. As I discovered, resourceful autistic preschoolers can quickly move a chair over to doors with locks strategically placed “out of their reach.” Thus, I learned to keep all chairs away from the vicinity of the door, and to move the locks to the very top of the door. Dennis also recommends that when you have to put extra locks on your exterior doors to make sure to upgrade your smoke and carbon monoxide alarms. Put a bell or alarm system on the doors, or – ideally – have a professional locksmith or burglar alarm company install a system. Use technology to your advantage. Have stickers put on all windows near exterior doors alerting first responders that there is an individual with autism in the house. (See ASA’s Safe & Sound program for stickers and more tips.)
  • Use social stories, books, or videos to teach ASD children about safety issues and being able to respond to police and emergency services personnel. This will be most helpful in situations when you (the parent) might be incapacitated, such as a car accident, or in a fire, so that your child will not hide or run from rescuers.
  • Of course, secure poisonous chemicals, cleaners, matches and lighters, tools, knives, and weapons in locked cabinets. Make sure the ASD individual does not have access to the key!
  • Ask your local 911 call center to “red flag” information about your child in their database before you need to call them in an emergency. That way, if and when you call during an emergency, the 911 dispatcher can alert the first responders with the information before they arrive. Providing them with this information before an incident occurs will yield better responses.
  • Prepare an Autism Emergency Information Form and make copies to keep on the refrigerator, near the phone, in your purse and the glove box of your car, and to give to other family members, teachers, friends, trusted neighbors, and caregivers.
  • Consider ID options. Even verbal individuals may have difficulty expressing themselves in stressful situations and would benefit from some type of identification. Options include a MedicAlert bracelet or necklace, a shoe tag, laminated cards sewn into jackets or on belt loops or zipper pulls, and non-permanent tattoos that bear ID information (tattooswithapurpose.com).
  • Check if there is a Project Lifesaver program near you.  If not, use a personal GPS tracking device, such as those featured at Brickhouse Security (be sure to scroll down to read the FAQs). Again, use technology to your advantage: LoJack SafetyNet features a tracking bracelet that utilizes radio frequency technology and has a 6-month battery life.
  • Keep a record that notes all the safety precautions you make. You may need to prove to authorities that you are not a neglectful parent, especially if your child is a wanderer. Some will assume that this is because the child is unsupervised for long periods of time and will tell you that you need to “keep an eye on” your child or “teach them not to wander off.” We parents of ASD children are some of the most vigilant parents around, but those who don’t know us (or our children) tend to make assumptions, and unfortunately we hear those types of comments all too often.

In the next post, I’ll discuss what I learned from the seminar about what you can do in your community to help manage risk and keep your child safe.

Autism Safety & Risk Management, Part 1

Ever heard of Dennis Debbaubt? If so, you probably appreciate him as much as I do. If you haven’t heard of him yet, you need to become familiar with him. And you’ll be glad you did.

Dennis Debbaubt, parent of a young man with autism, has a background in investigative journalism and, as a professional investigator and law enforcement trainer, he has written or co-written over 30 articles and books since 1993, including Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders. Dennis has also created several training videos which have been viewed by hundreds of law enforcement and emergency services agencies throughout North America and the United Kingdom.

Dennis spends his time traveling and presenting seminars on Autism Risk and Safety. He uses a multi-media approach to train law enforcement, first responders, and emergency services personnel about autism and how it affects individuals they might come in contact with in the field. He teaches them about the sensory issues commonly associated with autism, fearfulness and communication issues that can drastically impact how a first responder can help an autistic individual, and what to do in various situations involving children and adults with autism. In addition to training law enforcement personnel and first responders, Dennis also presents seminars for parents, care providers, and educators, discussing many helpful safety tips in the home, at school, and in the community, and how to develop partnerships with law enforcement agencies and emergency services. Dennis promotes autism awareness and understanding in an area that is of the utmost importance – our children’s safety.

Recently, I was fortunate enough to attend one of Dennis Debbaubt’s Autism Risk & Safety seminars. I came home with pages of notes and helpful materials that I couldn’t wait to share with all of you. More importantly, I came home with the knowledge that we parents have the most influence in how safe our children are – and how proactive we are in our risk management. We parents don’t have all the answers about autism. But you have more answers than anybody else about your child. No one knows more about your child than you do, so share that knowledge with those that need to know. Dennis Debbaubt’s message is to be proactive – don’t leave it up to anyone else. We have to do this for the safety of our children, no matter how old they are.

Over the next week, I’ll be posting segments from the seminar about what you can do at home for autism safety and risk prevention, what you can do in your community, and provide a list of essential resources. Check back soon for my next post on things you can do at home and school to protect your child with autism. We cannot eliminate risk, but we can manage it.

Scratch Where It Itches

“But it itches!”

This is often Nigel’s refrain (spoken between clenched teeth) when I discreetly remind him to stop scratching his head. And no, he doesn’t have dandruff. Nor does he have lice, scabies, or any other type of external cause of itching.

The head itching started about a year and a half ago, before he began taking either of his two daily medications. Interestingly, it also started right around the same time that the “adjustments” started. By that I mean the “situating” of certain appendages that seem to become jostled throughout the day. Not having the same certain appendages myself, I’m unable to identify with the need for their frequent “adjustments.” Fortunately, my son’s hand remains outside of his clothing when he makes these “adjustments,” but I often have to remind him to go to a bathroom to do it, especially when we’re out in public. Same with the head-scratching.

“People don’t like to see other people scratching their heads for long periods of time,” I tell my son. “It’s not socially acceptable. When people see someone scratching endlessly, they think they have lice or some type of skin disease. A quick, occasional scratch is okay,” – and here, I demonstrate a discreet scratch –  “but not a lengthy, ‘Bare-Necessities’-type of scratch-fest.”

“But it won’t stop itching!”

Initially I thought that he might have been allergic to the shampoo he had been using, so we switched to a chemical-free, organic shampoo. Then a different one. Then T-Gel. Then we tried various ointments and creams. Heck, we even tried saturating his scalp with organic olive oil for 20 minutes prior to washing his hair, since I had read somewhere that it was a good remedy for itchy scalps. Nothing has worked. Nothing.

I considered the possibility of a food allergy causing his scalp to itch, but his diet hasn’t changed that much in the past year and a half since the itching started. We already tried the GF/CF diet, but Nigel has never exhibited the gut and digestive issues present with GF/CF allergies, nor did he show any signs of improvement when we tried the diet. It could be something not GF/CF-related, but since his daily diet has not changed much, I have no idea what it could be.

One thing’s certain – the itching started right about the time I realized that he was into puberty. So it could be a result of the hormonal changes he’s experiencing. If that’s the case, how long before his body adjusts? How long before his scalp normalizes and the itching goes away? I had learned last year at the Autism and Puberty seminar that I attended that people with autism are prone to Candida, a type of fungus, which can cause itching. However, that is usually accompanied by gastrointestinal issues and other symptoms. Yet again, I am at a loss for the cause of the itching of Nigel’s scalp.

So I’ll just blame puberty. It’s responsible for many other problems we experience around here. And since the average time span of puberty for boys is six years, we’ve got a few more years of rampant scalp-itching to contend with. Any ideas out there other than Baloo’s tree method? Please?

Autism and the Dentist

I’ve unfortunately been having some dental work done this week – on myself. And as much as I would rather not be doing it, I’m glad that I’m the one, and not Nigel. As I sat there in the chair this morning, getting my mouth shot up with novocaine and then having my teeth drilled, I wondered how he would handle it.

I brushed Nigel’s teeth for him until he was six or seven years old. I just didn’t want to risk having him brush his own teeth poorly and getting cavities, which would mean having to take him to the dentist.  He used to get upset by lawn mowers and leaf blowers that he could hear from three blocks away, so how on earth could he stand a dentist’s drill in his mouth? He shrieked whenever I would try to trim his hair with scissors (because clippers were out of the question), so naturally I dreaded having to take him to the dentist. I figured that if I brushed his teeth for him, he wouldn’t get cavities.

So, when he was seven, I had him start brushing his own teeth, because it was time. After about two years of him doing it himself, I noticed that his sound sensitivities seemed to be waning, and I thought that it was probably high time that he saw a dentist and had his teeth checked. I prepared him with social stories, played dentist with him, and promised a reward after the appointment. He seemed ready. I stayed with him the entire time, of course, and notified the dental office ahead of time that he had autism. They were very accommodating, letting Nigel touch the instruments before they placed them in his mouth. I felt like I was holding my breath the entire time, hoping that nothing would upset him. Drills were going in other rooms, and he reacted to them and seemed a little nervous, but I assured him that they wouldn’t be using those on him that day. I was so glad that he was able to filter out the sounds and remain seated in the chair.

And, in fact, he’s never had to have his teeth drilled. Not that day, not ever. Nigel has never had a single cavity, thank God. He’s never had to be restrained to receive shots in his mouth, and he’s never had to try to sit calmly while someone drilled his teeth. I suspect that many autistic kids have had to be sedated to have dental work done on them, and I wonder if Nigel will need that at some point. But we’ll keep our digits crossed – he’s been to the dentist every year for the past five years, and no cavities. I find that fact astounding considering that he barely has the toothbrush in his mouth for thirty seconds and won’t do it at all unless I remind him.

I go in next week for my last bit of work, and then I’m done – with any luck, for good. Maybe I should just start brushing my teeth for thirty seconds – it seems to work for some people in this house. And anyway, as Nigel says, “Who cares about hygiene?”

Sick Bay

That nasty stomach-bug thing that’s been going around has made its way to our house. Right before bed last night, Nigel ran to the bathroom to throw up. I thought at first that it was because (I’d discovered) he drank way too much soda that afternoon and evening while I was working in my office. But typically if his stomach’s upset for that reason, it’s a one-time elimination deal. And, unfortunately, Nigel’s trips to the bathroom occurred several more times throughout the night.

Usually, he makes it on time, but at one point in the wee hours, I heard him (the sound at which all parents groan) and went to check on him. It wasn’t pretty. I cleaned him up, got him back in bed and reminded him about using the old pot that I’d put by his side for the next episode, and then cleaned up the carpeted hallway, the bathroom door, sink, mirror, and floor. I didn’t even want to know what time it was.

Nigel has always been a trooper when it comes to being sick. Even as a young child it didn’t seem to faze him. He never whined about being sick – he just took it. He’s still the same way. And he loves saltine crackers, which I only buy when the kids are sick. I think it’s like a consolation prize in his mind – he requested the saltine crackers moments after he vomited his entire dinner. Not yet, I told him. Your stomach needs to rest. I’ll get you some tomorrow. And he accepted that. His stomach probably made him sense that it was best to wait.

Fortunately, though, our family doesn’t get sick much, especially in recent years. Two and a half years ago, we started eating organic food. Not everything – in fact, probably about half of the food we consume is organic – the stuff that we eat every day. But it really makes a difference in our health. In two and a half years, both boys have only been sick twice, and it was mild – over in two days. I’ve only been sick once, also mildly.

But still, even in my children’s teen years, I’m cleaning up puke. At some ungodly hour, no less. Afterward, I manage to get a little sleep. In the morning I get up and get Aidan off to school, check on Nigel, empty and clean out his used pot, wash my hands, and come in the office to work. Suddenly I hear retching sounds in the hallway right outside my office door. It’s one of the cats, about to yak on the carpet. I leap up from my desk and grab the poor thing, herding him into the bathroom and holding him over the linoleum. Then I clean that up, laughing at the fact that I have cleaned more puke in the last nine hours than I have in the past four years. I wash my hands for about the thirtieth time, put on my shoes and coat, and go out to buy non-organic saltine crackers. And maybe a new mop.

Managing Stress

I took one of those online tests today to evaluate my stress level. I mean, I don’t need an online test to tell me that I’m feeling a lot of stress, but I just wanted to see how I would score. It was high. It actually said, “You have high stress. Take action now to reduce and manage your stress. Stabilize the amount of changes in your life and avoid unnecessary stress. Evaluate how you communicate, manage your commitments, and prioritize your time. Make stress-reducing lifestyle choices a priority: seek therapy or exercise.”

I scored high even without the following questions:

  • Do you have a special needs child?
  • Is your children’s other parent involved less than 50% of the time? Less than 30%? Less than 20%?

And that’s probably good that the test didn’t ask those questions, otherwise my results might have said, “You have immeasurably high stress. We’re amazed you haven’t had a stroke yet. Check yourself in at your local mental health facility before you completely lose it. Don’t bother seeking therapy or exercising. Those things can’t help you now.”

I feel like I’m teetering on a cliff and, at the same time, being pulled in several different directions. Homeschool, work, work projects, household stuff, autism stuff, SPD stuff, appointments, errands, meetings, trying to write. There are not enough hours in the day.

I try to schedule downtime. This past weekend, I visited a friend at her house one night, and the other night I watched a movie at home with my boys. And those things are important, so I do them. But they don’t eliminate any of the other dozens of things I have to do. Giving myself downtime doesn’t seem to solve the issue of not having enough time to do all that I have to do.

So I go back to what the little online test advised: Evaluate how you communicate, manage your commitments, and prioritize your time. I think this is the crux of the matter. Autistic kids aren’t the only ones who benefit from schedules – their parents do, too. I’ll make myself a schedule so I’ll be better organized. I’ll just put that on my to-do list.

Eventually I’ll get to it.