Teen Autism

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.

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.

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.  

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.

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.
• 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.

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.

“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?

After a scary trip to the emergency room, numerous tests and doctor appointments, and many prayers, we finally have an answer for what’s been going on with Aidan’s insides. Last week’s hour-long scan, the “it’s-probably-not-this-but-let’s-just-rule-it-out” actually turned out positive: a condition called Meckel’s diverticulosis. It occurs in about 2% of the population. Of that 2%, only 5% have symptoms requiring surgery. Of the 5% with symptoms, the vast majority show symptoms by age 2. It is extremely rare for symptoms to be apparent after age 10, which is why they didn’t think it was what Aidan had. In all cases, the diverticulum forms in utero, so Aidan’s has been affecting him for close to thirteen years.

So yes – that part about surgery. Aidan will need to have surgery to remove the diverticulum from his intestines. They also want to schedule a sigmoidoscopy before the surgery to check for polyps or any other problems since we have a family history of colon cancer. So my little guy will go through two invasive procedures in the space of two weeks. I am still trying to wrap my mind around all of this, and Aidan is scared. So scared that he actually told me that he’s scared. He was scared before we found out about the Meckel’s, wondering what was happening with him, and now he’s scared about the surgery. I tried to assuage his fear by mentioning several family members who’ve come through surgery just fine, but the fact is that I’m scared too. I don’t like this one bit. I just keep telling myself that at least it’s fixable. The “good” news is that once the diverticulum is removed and the intestines repaired properly, there are usually no long-term problems. There is some remote risk of post-op complications involving infection, but that’s not going to happen, I tell myself. He will be fine. He’ll be dragging logs at the beach again in no time.

Prayers, please.

I’ve had several inquiries about how Aidan is doing, and the short answer is this: He is not in pain, but we still don’t have any answers.

In the past four weeks, Aidan has given about nine vials of blood and at least as many stool samples, which is not fun for either of us. He’s had his stomach x-rayed and endured two rectal exams. And today, we went through a lengthy radiological scan.

I’m sure many of you know what it’s like to sit next to your child in a hospital bed, or on a gurney, holding his hand and stroking his head as you tell him to relax and try to hold still while this thing scans him for an hour and that you’re right here and it’s going to be okay. And you read to him and talk to him and periodically reach over to apply pressure to the injection site because he said that makes it feel better. And there’s a huge machine hovering over his little, fragile body, and just as you think, God, I hope that thing is secure, your son says, “Mom?  What if this thing falls on me?” And you tell him, “Honey, if that happened, it would make a creaking noise and start to bend first, and in that instant I would grab you, ‘cause I’m right here, and I would pull you out of the way before it fell on you. I promise you.” Because I am your mom. And it kills me to not know what’s wrong. As I watched on the screen while the diagnostic chemical moved its way through his digestive system, I hoped that it wasn’t doing more harm as we tried to rule out yet another potential cause of his internal bleeding, which has lessened considerably but is still present. A slow bleed, the doctors called it.

They have ruled out E. coli and salmonella and internal hemorrhoids and ulcers. Next month is a visit to the gastroenterologist for a sigmoidoscopy. So not fun. And part of me thinks that Aidan’s limited eating is at least a contributing factor, so I have also set up an appointment with a counselor to address that issue. One way or another, we will figure this out.

And the other part of Double Duty? The Nigel-back-at-regular-school variable? Aside from the initial unsupervised-lunch-time spectacle, things seem to be going well. So far so good, I’m happy to report. At this point, the less damage control needed, the better. At any point, really.

I like to be prepared and calm when I go into an IEP meeting. So last night after dinner, I sat down with my notepad and jumbled head, full of points to bring up at the meeting, and tried to make sense of them. I planned to spend some time researching topics online, and then I figured I better call Nigel’s dad to go over a few things with him, since he lives 700 miles away and does not attend the IEP meetings. I got up from my desk to go get the phone.

It was then that Aidan came and breathlessly informed me that he had pooped blood. Not that there was merely some blood in his poop, but that when he sat on the toilet, almost all that came out was blood. I checked and became alarmed. I grabbed my HealthWise Family Medical Care Handbook and looked up his symptoms. The book said to call a doctor. Then Aidan vomited. I got on the phone and, since it was after office hours, I was told that a nurse would get back to me within the hour. During that time he pooped more blood and vomited again. The nurse called and told me to take him to the hospital. While I was getting things ready to go and giving instructions to Nigel, Aidan pooped more blood and crashed into a wall. We quickly went to the ER, where they hooked him up to an IV, took blood samples, and exclaimed over his high heart rate. They asked about Aidan’s eating habits, so I explained about his oral defensiveness, and the ER doc told me that he didn’t know what that was. He looked at me like I was making it up. They x-rayed Aidan’s stomach. They did a rectal exam (poor kid). I called Nigel every 45 minutes to check up on him, and he said, “I hope Aidan’s okay, because I don’t want to be an only child.”

Four and a half hours later, we made it home with a bunch of materials with which to collect stool samples. Aidan’s heart rate had normalized and he was no longer pooping blood or vomiting, but his stomach x-ray and blood tests showed nothing, and we had no answers as to what had caused the bleeding. It was one in the morning. I put the boys and myself to bed, now worried about Aidan and unprepared for Nigel’s IEP.

I awoke realizing that we had all slept through the rest of the night. I checked on Aidan and he was fine; he had also slept through the night with no further episodes. I called his regular doctor to schedule a morning follow-up, as instructed. I called their father, as I had meant to do thirteen hours earlier, and told him about Aidan. No time to go over the IEP. I got Nigel started on homeschooling, then Aidan and I went to see his doctor, sans stool sample. I brought my notepad, and while in the waiting room jotted down some ideas for Nigel’s IEP. Aidan’s doctor didn’t have any news for us, except that it is rare for a twelve-year-old to experience the passage of so much blood in that manner. Thought so. In any case, still no answers until they’re able to do a stool sample, so we’ll work on that. Good times.

Came home, called their dad back to try to discuss Nigel’s IEP. Got in ten minutes of sounding board time. Supportive, but too far away to help. Ran out the door to the meeting, armed with my mantra and my print-out of Mama Mara’s helpful post. Dismayed to discover that the meeting was only scheduled for 45 minutes; it was only to cover scheduling and placement. No time to go over anti-bullying suggestions, nor potential academic concerns.  Way rushed. Tried to wedge in a mention of Circle of Friends at the end of the meeting, which was met with nods about what a good idea it would be. Like, in the future, when the 1-in-150 crop of ASD kids enters that school. Thanks.

So, the IEP was not as successful as I’d hoped. One person can only push so much. Especially when that person has another child with unknown health issues. In all honesty, my mind really wasn’t on the IEP. For now I’ll just have to trust that Nigel’s therapists and teachers, and his new medication, will get him off to a good start next week. In the meantime, I’ve got a few stool samples to collect.