Category Archives: What It’s Like

Not Alone

Most of the time, we like to be right. We like that feeling of validation when something goes the way we thought it would. But there are, of course, times when our intuition kicks in, we get a hunch, and it’s not a good one. We hope like hell that we’re wrong.

I wrote recently that I’d been noticing what appeared to be postictal signs from Nigel, that I thought he might have some seizure activity going on even though I hadn’t witnessed it. Unfortunately I was right. He had a seizure on New Year’s Eve while visiting his father. What timing, right? Way for 2010 to get in one last jab on its way out.  Anyway, Nigel’s okay; apparently it was milder than the first one. But still – I so wish I had been wrong. A new year began just a few minutes after I received the call from my ex-husband, and I paced the hallways of my home, crying and swearing at autism for providing yet another issue to continue worrying about. Sobbing about how it never ends. Wishing, again, that I had been wrong.

But the next day, somehow, I felt better. It was a beautiful, clear New Year’s Day (a clean slate!), and I felt determined not to let the event of the previous night get me down. That evening I picked up my boys from the airport (they flew alone again!) and we drove home. It was so good to have them with me, to hug them (even though one can’t really hug back), and to feel the peace that their presence brings me.

I also felt better because I know that I’m not alone in my experiences. I have been blogging for almost three years now, and it has been my lifeline. I cannot put into words how much I have benefited from all the encouragement and advice I have received from readers and fellow bloggers out there. That’s right, from you. You reading this right now, my friends. You have offered much-needed recommendations when I was searching and deciding about medication. You have celebrated Nigel’s accomplishments with me and lauded his progress. And you have empathized; you have supported me when I worried. There are so many more posts I could link to. Through your beautiful comments and your generous emails you have buoyed me up and helped me along this leg of the journey. My gratitude is boundless.

And so, I’m very sorry to say that I’m at a point where I need to stop blogging. This post is my swan song for TeenAutism.com. Basically, as much as I’ve loved blogging, my energy – what little there is – is needed elsewhere in my life. Aidan will soon be doing something that will change his life, and Nigel’s, and mine. But he is fourteen, and that is his story to tell, should he choose to. He deserves so much more of my energy than I have been able to give him over the years, so I want to focus on him now as much as I can. Nigel, of course, will continue to consume a lot of my energy, and whatever’s leftover I hope to channel into some more fiction writing.

I wish I had more time and energy so that I could continue to blog – to do this thing I have enjoyed immensely. I feel like I’m leaving so much unfinished! For example, I’d wanted to post a book review of Late, Lost, and Unprepared: A Parents’ Guide to Helping Children with Executive Functioning. I’m not even half way through it, but I can already tell that it’s a fantastic resource, and I highly recommend it. Another thing I wanted to do was get back to the “What It’s Like” series that I started a while ago. I wanted to hit up my wonderful extended family members for interviews about what it’s like to have a nephew and grandchild with autism. I wanted to talk more with Aidan about what it’s like to have a brother with autism, and write about it. I wanted to do posts called “What It’s Like to Have a Child with Autism” and even “What It’s Like to Have Autism,” from Nigel’s viewpoint. Then I thought about it, and I realized that it’s all here, contained in the existing posts of this website. The social challenges, the sensory issues, the bullying, the obsessive thoughts, the medication and therapy, and much more.

It’s all here.

But there are so many unanswered questions about Nigel as he closes in on adulthood – will he drive, will he continue to have seizures, will he be able to have a job, live independently? How will he be as an adult? Some of that I might mention on Facebook periodically, if you’d like to find me there. I’ll also keep this site up with a home page that I’ll update from time to time with information about how Nigel’s doing. This website has become the resource that I was looking for over three years ago as Nigel entered his teens and I searched desperately for information. Not finding much, I decided to create TeenAutism.com. I figure there will be many more parents Googling “autism in the teen years,” and I’d be honored if they might consider any of my 436 posts to be a resource for them. I’m also touched by the fact that many parents find this site by searching the phrase “so proud of my son blog.” Because I am – of both of them.

My friends, I want to thank you once again for being there, for being part of our lives, for joining us on the journey. I appreciate you more than I can say. I leave you now with one last Nigelism:

The Scene: Interior of suburban family home. A mother enters the bedroom of her teenage son who has autism. She is coming to say goodnight to him, and he is in his bed, expecting her. As is their nightly ritual, she shuts off the bedroom light and comes over to the side of his bed to kiss his forehead and tell him she loves him. As she leans over and kisses him, he holds out his arm and reaches over to turn on the small light on the headboard of his bed.

Teen son (softly): I can’t see you. Let’s do it again so I can feel like I’m not alone.

Mother (with lump in throat): Oh, honey. You’re not alone. You’ll never be alone.

My Undiagnosed PTSD

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

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

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

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

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

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

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

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

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

What It’s Like to Have an Autistic Friend

I’ve written before about Nigel’s quest for friendship and his need to be social. He has been fortunate to meet some patient and friendly NT kids through his involvement in Scouting. Continuing with the What It’s Like series, I wanted to highlight a couple of his friends and ask them a few questions. They are brothers; the older one is Nigel’s age, and the younger one is Aidan’s age. Here are their combined responses:

1) How long have you known Nigel?  3 years; 7 years

2) What have you heard or been told about autism?  That just because they have autism doesn’t mean they are stupid. In fact, in some ways they can be smarter than normal.

3) What’s it like hanging out with Nigel?  It’s always fun; awesome – he’s super smart.

4) What ways have you noticed Nigel acting differently?  He gets up close to your face (not all the time).

5) When you’ve witnessed Nigel have what’s called a “meltdown” – become upset about something – how does that make you feel?    It makes me feel sad; sad and guilty.

6) Have you ever witnessed other kids giving him a hard time or bothering him?   Yes; yes, many times.

7) What’s the most difficult part about having an autistic friend?   Getting him to understand; not to get frustrated with him when you want to say something and he keeps cutting you off.

8) What do you like about having an autistic friend?   He’s super smart and has a great imagination – super fun to play with; it’s never boring!

9) Any advice you would like to mention for other kids who might meet someone with autism, or anything else you’d like to add?   Be patient!

A big thank you to Nicholas and Tyler! I appreciate your time in answering my questions, but I appreciate you so much more for being such good friends to Nigel (and Aidan). Our family is very fortunate to know yours. Also, many thanks to your mom, Cheryl, for facilitating the interview. You guys are the best!

What It’s Like to Date Someone Whose Child Has Autism

This is the first post in a new series called What It’s Like. I intend to interview friends and relatives to get the viewpoints of everyone who is affected by having someone with autism in their lives – past, present, and future.

I wanted to start off with one of the more recent people to become involved with Nigel – my boyfriend, Rick. We have been dating for several months, and I recently talked with him about his views on dating someone who has an ASD child. Additionally, for some insight into what it’s like to date and be married to someone on the spectrum, check out Jeffrey Deutsch’s informative posts on relationships. Another interesting post was written by Sam, who dated someone with Asperger’s. We can all learn so much from each other.

1. Did you have any experience and/or preconceived ideas about autism prior to knowing that I have an autistic son? What did you think at first?

I didn’t have any thoughts – I had heard stuff on the radio about autism, but really had no idea what it was about.

2. From what you know now about Nigel’s autism being more severe when he was younger, do you think if you had met and dated me then that things would have been more difficult?

Probably, but I wouldn’t have left.

3. What, in your experience now, is the most challenging thing about dating someone who has an autistic child?

When he was younger, I’m sure that getting a babysitter would have been a big challenge, but right now it’s not really much of a challenge to me, and I don’t mind it. I’m accepting this for what it is.

4. What are the things you enjoy about dating someone with an autistic child?

He makes me laugh sometimes – stuff he says. I do have fun with him and the way he laughs.

5. Do you have concerns about the future regarding Nigel living with me into adulthood?

No, I’m a very family-oriented person.

6. Why do you feel comfortable dating someone with an autistic child?

My brother has paranoid schizophrenia, so I’m used to different behaviors and ways of communicating.

7. Would you feel differently if Nigel were still non-verbal?  No.

8. Any advice for someone entering a relationship with a person whose child has autism?

Be patient, and let the kids get to know you at their own pace.

9. What about for the parent whose (teenage) child has autism?

Don’t worry about him being out in public and disturbing people; let him spread his wings a little more.

Many thanks to Rick! Be sure to visit Aerocraft Fiberglass to check out the cool race car bodies he designs and manufactures!