Teen Autism

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Some of you may recall that a couple of weeks ago I mentioned that I would be taking Nigel and Aidan to the Grand Canyon when I go to visit them during their two-month stay at their dad’s house. Some of you may also recall that in April I mentioned that I would be going to Nepal this summer with Knowledge for People to do an autism educational volunteer program. And some of you may be as excited as I am when I tell you that I am doing both trips!

Friday morning I fly to LA, and I’ll spend the 4^th with my extended family members who live there - Dad, brother and sister-in-law, and my sister. (In case you’re curious - I’m actually from LA. I moved up to Oregon to go to college and ended up staying. It’s that beautiful. Funny thing, Nigel and Aidan’s dad is also from LA, but we met and married in Oregon. Just a little Tanya Trivia for you.) Anywaaaayyy, then I am renting a car and picking up the boys to go to the Grand Canyon for a few days. This will be my fourth time there, and the first for them. I’m looking forward to sharing it with them, but really, I just can’t wait to see them and hug them. I’ve missed them so much already.

After I return Nigel and Aidan to their dad’s house, I will fly out of LAX for Nepal. I’ve spent the last week preparing two presentations I’ll be giving - one on sensory issues, and the other on my parenting experience. I’m the only parent of an autistic child on the team going to Nepal, and I feel so humbled to be speaking to these parents and teachers (through an interpreter). How can I talk about the challenges of raising a child with autism, when I have no idea how challenging their lives already are? Who am I to talk to them about challenges?! They are in a country with no resources for their child! But we are hoping to help with that, and I am honored to be a part of this.  I prepared outlines of my presentations and sent them to the director of Knowledge for People, and she will forward them to the founders of the newly-formed autism center in Kathmandu who, I hope, will have the outlines translated prior to our arrival. That way the parents will have something to refer to while the interpreter and I are speaking to them, and they’ll have some written material to take home with them.

And in case I sound all nonchalant as I’m mentioning that I’ll be traveling to Nepal and speaking to a group of people and having my words translated and all, don’t let the casual tone of my writing fool you. I can’t believe I’m doing this!!! I can’t believe, after months of planning and preparation and thinking can I really do this?, that the time has come and I am doing it!! Talk about taking a leap! I’m a little nervous, but fortunately my excitement seems to be overriding my butterflies.

So, my friends, the blog will be quiet for a while. We’re supposed to have internet access in one of the places we’re staying, but I am laptopless, so I’m not planning on posting during my absence. That just means I’ll have plenty to post about when I return! (And I’ll be swamped with work to catch up on, but we won’t talk about that now.) I’ll be back in Oregon on July 28, and I promise I’ll post as soon as my jetlag fog clears. Namaste!

*photo courtesy Wikipedia

Every now and then, I receive an email from someone affiliated with an organization that supports ASD individuals and their families asking if I will post a notice about them on my website, and I am more than happy to do so. I am honored to be asked. When I started this blog/website over a year ago, I had hoped for it to become a resource for other parents and those on the spectrum, as well as a way for me (and my sons) to connect with them. Passing along helpful links and information is one way to accomplish that. It is my pleasure to highlight the following organizations:

• Autism on the Seas provides group cruises for adults and families living with autism and Asperger’s. They specifically accommodate children - and adults - on the spectrum, partnering with Royal Caribbean International and Disney. “We’ve made cruising with autism our expertise,” they say, and their website lists numerous testimonials from happy patrons. I am definitely considering this for a future trip!
• Possibili-Tees is a non-profit 501(c)3 organization that does custom screen printing. They exclusively hire those with autism and other developmental disabilities to print shirts, hats, and other items for camps, schools, sports, conferences, and various events. You can also purchase shirts individually on their website.
• The Phoenix Zoo has begun fundraising for the 5^th annual Zoo Walk, which is on October 17, 2009. Their goal for 2009 is to raise $150,000 for a study of several autism treatments, including diet and nutritional supplements in 100 children and adults. Join them for a great family event and support research on effective treatments for autism!
• Rethink Autism is a web-based autism treatment platform that helps parents and professionals design individualized, affordable programming to meet each child’s learning goals, while state-of-the-art data-tracking systems allow users to track the learner’s progress. Using ABA-based methods, the video curriculum includes hundreds of exercises and training modules based on proven teaching techniques. The lessons target a comprehensive range of skills in critical developmental areas such as language and motor skills, social and emotional learning, and daily living. For parents who are having difficulty obtaining behavioral treatment for their children, this is truly a valuable resource.

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.

With the school year ending, it’s time for me to hang up one of my hats - for good. For the past year and a half, I have been homeschooling Nigel, and in September he will attend the high school for a full day, so I will no longer be his academic teacher. When he started back at the middle school in March, it was only part-time, so I continued to homeschool him for language arts and social science. He made some amazing progress in those areas, writing a total of five essays, including a comparative analysis of Ancient Greek and Roman cultures. His case manager at the middle school was so impressed that she took a copy of that essay to give to his future teachers at the high school. I’ll have to make sure they realize how much of an effort it was for him to complete that; it took him weeks to write it. They need to be aware of that before they expect him to produce more work - or at a faster pace - than he is capable of doing.

At any rate, come September my academic responsibility will be limited to helping him with assignments and encouraging his organizational skills. I will no longer be designing his curriculum, preparing lesson plans, or teaching the material. It was doable in middle school, even though it took me a while to get used to the idea, but I don’t think I could do it for high school. I mean, I consider myself to be fairly intelligent, but there’s a lot of high school knowledge that I would need to relearn in order to teach it to my son. It would take quite a bit of effort and time, and as a single parent of two, I’m in short supply of those items. I also had to radically reduce my work hours so that I could homeschool Nigel for the amount of time that I did; as a result, my bank account is in sorry shape. So continuing to homeschool is really not an option, and I’m glad that Nigel no longer needs it. We’re both looking forward to his return to full-time regular school, for many reasons.

But there’s something else that happens at the end of every school year, and has for the past eight years: Nigel and Aidan go visit their dad in Los Angeles for several weeks. LA is nearly 700 miles away from us; it’s a long drive. And another world away. They get a taste of big-city life, get to bodysurf on warm beaches, and Nigel gets to go to Kids Like Me Day Camp for autistic kids. These are all things they get to do that they can’t do at home in southern Oregon, and I am glad that they have the opportunity.  I’m also glad they get to spend time with their dad, whom they miss so much during the school year. But I miss them while they’re gone every summer. It’s just consuming, this missing. It’s not like when they’re gone for a week at Spring Break. One week is nothing. But seven, eight, is a daunting expanse that cannot be filled. Maybe I’m being melodramatic - I mean, after all, we go through this every year. But it never gets easier. I walk down the hall and see their empty rooms. I can’t watch a movie or eat ice cream without thinking of them and missing them. True, I’m keeping busy, especially since I’m back at work full-time, thanks to my wonderful employers. Life is full and good, but there’s this void with the boys gone. It doesn’t feel natural. I feel disjointed without them. And I’ve got a long summer ahead of me.

Since it’s impossible for me to go more than a month without seeing them, I’ll be visiting them next month, so that will break up the time, make it a little more bearable. For a while now, Nigel’s been requesting to go to the Grand Canyon, so three weeks from today, that’s what we’ll be doing. I can’t wait to share another adventure with them, but mostly I can’t wait to see them, hug them, to be in their presence. Of course, until then, I have phone calls to look forward to: “Hello, Mom. This is Nigel [insert last name] speaking.” Or perhaps a conversation like this one. Oh, well. I’m just happy to hear their voices.

So summer begins. And it just dawned on me that I’ve essentially combined two separate posts here - the end of homeschooling and missing my kids. Correlation? Nada. Let that be a testament to how disjointed I feel with my sons being away! I can’t even write!

Last weekend, Nigel had some friends spend the night for a little end-of-the-school-year party. I’ve mentioned Nigel’s friends, Nicholas and Tyler, before; Nicholas is Nigel’s age and Tyler is Aidan’s age. They are also brothers who are involved with Scouts, and we’ve been fortunate to know their family for several years. They’ve always been supportive and understanding of Nigel. I know that he values their friendship greatly, as do I.

So the boys had a blast, complete with pizza, root beer floats, gun fights, and a movie marathon. They’ll indulge Nigel in watching his latest favorite disaster movie with him, and he doesn’t mind if they fall asleep while they do. They’ve seen Nigel melt down, they’ve witnessed him being harassed at school, they know he’s prone to movie echolalia, used to have a type of barking laugh, and can sometimes get a little carried away when he’s having fun. They also know that sometimes he says things that are inappropriate or negative, and they realize that he doesn’t always understand these things. They’ve seen him at his worst, but they’ve also seen him at his best - creative, fun-loving, imaginative, and knowledgeable. I, for one, am so appreciative that they’ve stuck around. I know that Nigel is too.

And I appreciate their parents just as much. Their mom, Cheryl, a very good friend and a regular commenter here, and I like to talk for a bit during the pick-up/drop-off times when we can. We check in about our lives - our kids, parents, pets, homes, jobs, plans. Last weekend we talked about the upcoming transition to high school, that we couldn’t believe how big our older sons have so suddenly become.  I talked about how much better I feel about how Nigel’s doing socially, how the combination of his medication and having a few good kids around him has helped immensely. I mentioned that I thought it really made an impression on most of the other kids that I had to pull him out to homeschool him for a year and a half, and when he came back, many of them realized - hey, this is someone who needs a little extra help, a little understanding. Maybe those kids even matured a bit. Cheryl told me that she had recently asked Nicholas how Nigel was doing at school, if anyone was bothering him. Nicholas told her that aside from a small group of kids that likes to target him, everyone else has been nice to him. He said that if anyone sees any of that group approach Nigel to bother him, someone else always goes over to intervene and help Nigel out. They’ve got his back.

I told Cheryl how glad I was to hear that, and if, in my choked-up state, I neglected to thank her, I’m doing it now. Her boys, and a few others, have always been the core of Nigel’s circle. A few months ago, when Nigel, by choice, started back at the middle school to finish eighth grade, I tried to form a Circle of Friends by requesting it at his IEP meeting, talking to the principal about it, and emailing information to those who could make it happen. Despite my efforts, the administration didn’t pursue it. I felt so bad, felt that I should have done more, been a squeakier wheel.

But something did happen. When I wrote the letter to the school administrators, they talked to the kids who were involved in making a spectacle of Nigel. They - finally - told the kids a little about autism. And some of those kids felt remorse, and concern. And instead of continuing to have fun at his expense, many of them changed. They started being kind and helping him. I had read that this can be a positive result of Circle of Friends programs - that even kids who are not involved in the program hear about it and respond to the autistic students differently than they had before. It’s a ripple effect that can sometimes reach the whole school. That is what I hoped for when I requested a Circle of Friends program at Nigel’s school. And even though the program was never officially started, it seemed to happen on its own.

Less than a year ago, Nigel sat in his room one night and drew ape faces in his yearbook on the photos of all the kids that had bullied him. It made him feel better - his own type of art therapy. It was heartbreaking to see how many faces he drew over. This week, when he came home with his yearbook, it was filled with autographs and well-wishes for a good summer. It was filled with “you’re cool” and “see you next year.” These kids will be going with him to the local high school in September.

I had wanted a Circle for Nigel, but in less than three months, I got something much bigger. And I have a feeling that we’ll be having a lot more pizza-and-movie parties at our house next year.

Like many autistic people, Nigel’s always had a hard time being around babies. He just can’t filter the crying. It’s one of the only sounds that he still hasn’t been able to filter very well because of the unpredictable nature of it. That, and he just doesn’t understand why they can’t stop. It’s hard for him to be patient or understanding because his ears are killing him. “Can’t that baby stop crying?” he’ll say when he hears one in a store. Telling him that the baby can’t help it - or that he cried when he was a baby too - doesn’t help at all. It’s not about trying to develop understanding and patience. It’s about needing relief for his sensitive hearing.

And it started early on, too. Nigel was not yet two when Aidan was born, and Aidan had an even harder time with SPD than Nigel did. Poor Aidan spent about 80% of his waking life crying, and poor Nigel literally climbed the walls while Aidan did it. In fact, one of Nigel’s first words - “cying” - was said to describe his brother. Cying = crying without the “r”. He couldn’t say Mom or Dad, but he could say cying. “Yes, Aidan is crying,” I would say, and Nigel would run out of the room.

Nigel has no memory of those days, but he still can’t handle babies crying. He knows they can’t help it, he now understands that, but he wishes they didn’t have to do it. I told him that I’m sure their parents feel the same way!

But, despite how he feels about babies, Nigel is excited to have a baby cousin. He went to see Nolan shortly after he was born, and Nigel was a little nervous, but quite receptive. Now, Nolan is two months old, and we were very happy to have him (and his mom!) come to Nigel’s graduation party this week.  Nolan was very willing to accommodate his cousin and only cried while his diaper was being changed. After Nolan was fed and happy, Nigel came over, smiled at him, and said, “Hi, Nolan. Hey, little guy.” Nolan broke into a sweet grin and Nigel exclaimed, “He likes me!” Then he said, “But I’m pretty sure he’s not ready for some Godzilla action.”

Just yawning, fortunately . . . 

Dearest Nigel,

There are not enough words to express how proud I am of you today. A year ago, you anticipated your future eighth grade graduation, and I didn’t know how to tell you that because I needed to homeschool you, you would not graduate from the local middle school. On your own, you figured that out, and you initiated a plan to be able to go back there, so that you could graduate with your peers. Five months ago, you told me that you wanted to try some medication that would help regulate your behavior so that you could go back to the middle school. We did, and two months later, you were back at the middle school part-time. Three months have gone by, and I am so proud to say that not once during that entire time did the school have to call me about any behavioral issues. Not once. And today, you graduated with your class of fellow eighth graders.

Congratulations! You did it, Nigel. You did it. You set your sights on a goal and you worked to achieve it. But that should not surprise me, because that is what you have done your whole life. You were diagnosed with autism nearly twelve years ago, and you have continually shown me that although autism is an integral part of you, it alone does not define you. When diagnosed, and for some time after, you were completely nonverbal. Your sensory issues paralyzed you. I did not know back then that it was possible for any person with autism to progress as much as you have. The information was not available at the time, and I didn’t know what to expect. I didn’t know if you would learn to talk. I didn’t know if you could be mainstreamed in school. I tried to be realistic, and I didn’t dare to dream. But somewhere, deep down, I hoped.

All children learn, all children grow, but you have fought so hard to achieve that growth. You painstakingly learned to talk, to filter the agonizing sensory issues, to learn to function socially, to organize your thoughts. Many of these things you still work on, and will continue to. You will stop at nothing to work with your “difference,” as you call it, to understand it (autism) and how it affects you, and to help others learn the same. You are learning to advocate for yourself, and I am proud of that, too.

And so, my son, you inspire me. You have challenged me to be the best possible parent I can be because you needed the best from me.  “Difficult” would be an understatement for the road we have traveled together. But Nigel, if you can do it, so can I. I will continue to be right beside you, letting you lead the way. We have a big transition coming up, but when I look at what you have achieved today, and what you have gone through to get here, I’m daring to dream. I know you are too.

All my love,

Mom