An e-mail I received today:
Hi mom,
This is my pipe cleaner sculpture of Charlotte and her web. I made it
today. What do you think of it? We are having so much fun with dad. I love you and I’ll see you soon.Love
Neil
* one of the words Charlotte wrote in her web (and also what I think of the sculpture)!
Sometimes, when you’re the parent of an autistic teenager, you have to write letters like this:
Dear [Regional Autism Consultant] and [Neil’s speech therapist],
I hope this finds you both well. Neil continues to benefit from your social skills class, and I want to thank you both for doing it. I wanted to run something by you that I think would be an important addition to the regular social skills teaching. Today I had a meeting with [his case manager], and she mentioned that a student told her about a situation in which Neil was being taken advantage of and laughed at. During lunch, a group of students were encouraging Neil to tickle random people, and they would laugh when he did it. As you might remember, Neil has been targeted in this manner before, and it always pains me to hear of it.
I would be so grateful if you would work something into the social skills curriculum to help him learn to recognize these sorts of situations when people have fun at his expense by telling him to do something inappropriate. He doesn’t realize that it’s inappropriate or that he could get in trouble for touching other people. He thinks he is making friends this way, but the “friends” are laughing at someone with a developmental disability. They know that Neil lacks social awareness, and that’s why they target him. They are not innocent little kids anymore. And yes, Neil has been told before that real friends will not get him to do things that he shouldn’t do, and then laugh about it. But he needs constant reminders from people other than his mother. He needs to be taught how to recognize these sorts of situations. If a random student notices and takes the time to tell a staff member about it, then it’s pretty significant. And I’m sure it’s not the first time, even though it was the first time that was brought to our attention (that I know of).
So I think it would be helpful for Neil to have some reminders about what’s inappropriate at school, and that if someone tries to get him to do something and they are laughing about it, they probably don’t have his best interests at heart, and they should be avoided. I tell him these things, of course, but I think if he hears it from other adults (or peers who care) and is taught how to recognize those situations (perhaps through roll-play), then he might start to understand.
Thank you so much for your time and the work you do with my son.
Best regards,
Tanya Savko
And it breaks your heart, again and again. You believed that things were going well socially at the high school, that the other kids had matured since middle school, that these things weren’t happening any more. You hoped that no one would be insincere with him at his first dance, and you wonder if they were and your son just doesn’t have the social awareness to realize it.
Sometimes, as the parent of an autistic teenage, it really hurts. You’ve been advocating for over twelve years since the diagnosis, and you still have to do it. You still have to manage your pain and quell your anger. You have to keep moving, keep doing, keep hoping.
And no matter how much you love your son and the wonderful person that he is, no matter how far he’s come and how much he’s achieved and how high your hopes, it still hurts. For both of you.
Dear Neil’s Teacher,
At the Scout meeting on Saturday, I know that you were laughing good-naturedly when Neil worded something in an awkward way, and that you didn’t mean any harm, but I wanted to clarify for you what I said in response, because, as his teacher, it’s important for you to know. Neil did not start talking until he was five years old, and the process from that point on was very difficult for him. I described this in the information sheets that I gave to all of his teachers at the IEP meeting in September in the hopes that his teachers would be patient and understanding when he has difficulty expressing himself verbally. This is one of the many ways that his autism affects him.
When I said, “He does the best he can,” in response to your laughter, I meant that sometimes he is unable to formulate his word choice in a typical way, but he tries. He has always had difficulty using pronouns correctly. Sometimes he states something that’s obvious. Sometimes what he says can sound odd or off-the-wall to others, but he cannot help it, just as [another student] cannot help it when he stutters. When [the other student] stuttered at the meeting, no one laughed. And I really hope that when Neil says something in the classroom that is obvious or might not make sense that you do not laugh in response. This sets a negative example for his peers, many of whom have bullied him in the past. This is why I had homeschooled him previously. It would be very upsetting if the bullying started again, as it would affect Neil’s academics negatively along with his well-being.
As I said, I know you did not mean any harm by laughing. I just wanted to make sure you realize that he cannot help it if he says something awkward. He has always tried so hard to communicate, and when he says something that doesn’t sound right, he shouldn’t be laughed at. Thank you for the work that you do as a teacher, and for your patience with my son. I know that a student with autism can be more difficult to teach, and I do appreciate all of your efforts.
Sincerely,
Tanya Savko
Dear 2010,
Greetings to the first year of a new decade! You must be excited! Or are you feeling pressured? If so, don’t worry. All things considered, we are more flexible and have fewer expectations than we did last year.
That doesn’t mean we don’t have plans for you. On the contrary, we’ve got some big plans! But what’s different from last year is that we’re not limiting ourselves to our own expectations. You see, I learned something this past year. In my letter to 2009, I wrote that, among other things, we were expecting a “problem-free trip to the Grand Canyon.” We did make that trip, and aside from an attack of acrophobia and a massive bloody nose inside the Canyon, it was “problem-free.” But what I couldn’t have foreseen when I wrote the letter was that I would have the opportunity to embark on another trip last summer. I would journey to Nepal for two weeks to work with families with autism, and it would be one of the most fulfilling experiences of my life. There was no way I could have expected that wonderful trip to happen! In addition to that, there were countless other experiences throughout the year that have enhanced our lives and helped us to learn what we needed to know, whether we expected them or not.
And so, 2010, I’m leaving my expectations open this year. I’ve learned that things can turn out way better than I could have ever planned or expected. Yes, we’ll still make plans and set goals and do our best to achieve them. And if things don’t work out the way we plan, that’s okay. We know that you’ve got something lined up that will work out even better. So, Welcome, 2010! We’re really looking forward to seeing what you have in store for us.
Best wishes,
The Teen Autism Household
Image credit: the_franz
We interrupt the Nepal travelogue to bring you this shocking news: I am now the mother of two teens! How is that possible?
photo taken March ’08, at Great-Grandma’s 90th Birthday Party
Dear Aidan,
Some parents will tell their teenagers that “it seems like only yesterday” that they were born, that they were learning to sit up or walk. And I’m sure it’s true for them – I’m not knocking it. But you and I both know that it’s been a long road in this family. And while I can’t believe you’re 13 (!), it doesn’t feel like yesterday that you were little.
Of course I remember holding you, rocking you, singing to you. But I also remember that soon after you were born, Nigel began exhibiting signs of autism, which we didn’t know at the time. And then both of you exhibited extreme sensory distress and significant language delays. For a while, I thought I had two boys with autism. And while you were never officially diagnosed, you also had special needs that had to be addressed.
But whether you had special needs or not, you have always been special to me, and important. I just want to make sure you know that. Because in spite of having your own needs, you have often had to take a back seat to someone whose needs overrode yours. And you have always done so with love and acceptance. I know you often felt like you were the older brother, having to look out for Nigel. When you were younger, you wondered why your brother acted the way he did. I know you still do. And I know it’s been hard for you, especially at school, to carve out your own identity separate from your brother’s and to deal with the comments of small-minded peers.
I so admire you for your perseverance, and your courage. You faced a scary health problem earlier this year, and I know how that worried you. I was worried too. I’m so relieved that the surgery was successful and that you’ve recovered. Your best friend moved away a few months ago, and that’s been hard for you too. But you started hanging out with other kids and made the best of it, and I’m so proud of you. You’ve even started eating new foods. You are resilient, responsible, and resourceful.
I love your amazing, intelligent, creative mind. I’m in awe of the questions you pose and the deep, philosophical discussions we’ve had. I enjoy curling up on the couch with you and watching movies. I’ve missed that so much this summer! And I’ve missed you. I’m sorry I can’t be with you on your birthday, but you’ll be home soon, and we’ll make up for it. I’m glad you’re having this time with your dad, because that’s important too. I know you miss him a lot during the school year, and you do the best you can with that. Like I said, it’s been a long road in this family.
Happy Birthday, Aidan. I’m so happy that you’re my son, for so many reasons. I hope that your first year of your teens is way cool!
All my love,
Mom
P.S. Being a teen has its privileges. You’ll be happy to know that I’m finally getting you a cell phone.
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 you needed to homeschooled, 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
After a fifteen-month hiatus while homeschooling, Neil started back part-time at the local public school this week. How has it gone for him? Today was Day 3, and I had to write the following email, which was sent to the school’s special education coordinator, the district’s special education director, the regional autism consultant, and his social skills class facilitator:
Everyone,
I wanted to bring a concern of mine to your attention. Today when I picked Neil up after lunch, he came out to the car twirling around in the parking lot with a sheepish look on his face. Apparently a group of girls had been hanging around him at lunch, and they told him that another boy had “stolen” someone’s cookie, and that he – Neil – needed to “do something about it,” even though Neil had nothing to do with the situation (which I think was contrived). So Neil said that he chased the boy around to impress the girls, because they encouraged him to. This is just the sort of social problem that causes concerns. Neil is usually fine in class where it’s structured and supervised, but these problems come up at lunch. The kids are not overtly being mean, but they take advantage of both Neil’s trusting nature and his yearning to be accepted, and they get him to do things that either make a fool out of him or get him in trouble. After Neil had chased the kid around, one of the girls linked arms with Neil and walked somewhere and kissed him, in front of others. These kids are having fun at Neil’s expense, even though he doesn’t realize it because of his autism.
So I talked with him about a) not chasing anyone around for any reason, and b) not doing things kids tell him to do when he’s at lunch. If this continues, not only will he wind up getting in trouble, when it was not his idea in the first place, but it’s continuing a vicious cycle of using him for entertainment – he told me that the girls actually told him that he was “entertaining.” I do not want my son used in this manner! This has happened before at this school, and I’m upset about it happening again. Is it possible for situations like this to be role-played in the social skills class? Neil needs to be able to recognize when his peers are using him for entertainment, since the school doesn’t seem to think it’s important to teach the non-autistic kids not to take advantage of those with social difficulties.
The risperidone is helping Neil, and he is making such an effort, is so motivated to get back, and he has to deal with kids who try to make a fool of him and get him in trouble. This is why I mentioned the Circle of Friends program at the meeting last week, and why I think it’s so important to implement something like that. The school needs to foster awareness and compassion for students with social difficulties. No one would dare treat someone that way who’s in a wheelchair, so why does the administration say things like “this is a hard age” when someone who does not have a visible disability is targeted? This issue needs to be addressed. I realize that Neil will be moving on from this school soon [because he is in 8th grade], but he has four more years in this district with the same peers, and there are others coming after him who would also benefit from a program like Circle of Friends. How can we go about setting this up?
Thank you,
Tanya Savko
The good news is that within a half an hour, the district special education director sent me a very supportive response thanking me for notifying her, telling me that she would meet with the school principal tomorrow, and, most importantly, assuring me that she is “committed to making this work for Neil.”
It sometimes takes awhile – we were having these school issues two years ago – but the squeaky wheel eventually gets the grease.
Dear 2009,
Welcome! We’re glad you’re here! 2008 was a hell of a ride, but don’t think that you need to do any one-upping to impress us. Not at all. We’d like it just fine if you can keep things mellow.
I suppose I should define ‘mellow.’ You see, in a house where autism resides, we already have a lot happening on a day-to-day basis. We have a 14-year-old autistic boy who learned to talk but has trouble regulating emotions and behavior, navigating social interactions, dealing with sensory integration, and understanding the purpose of education and how it relates to him. We have his mother who is trying to homeschool him and work two jobs and manages to write something, cook something, and clean the house every now and then. We also have his sensitive 12-year-old brother who is figuring out his place in all of this.
So by ‘mellow,’ I mean that we don’t need people getting lost or hurt, trees catching on fire, pets getting hit by cars, computers and – heaven forbid, the Xbox 360 – crashing, furnaces going out, or bouts of food poisoning. We don’t need any more loved ones dealing with cancer or getting in car accidents. You might be thinking that I’m being negative or critical of 2008, but I don’t mean to be. 2008 was in many ways a positive year, with some big forward strides, and we learned a lot. We are more resilient and capable. All things considered, we are happy.
And we’re looking forward to a great next year of life – a year full of goal achievement (including a graduation), enriching experiences (including a problem-free trip to the Grand Canyon), and even a new nephew/cousin! We have great expectations of you, 2009. And we think you’ll do just fine.
Best wishes,
The Teen Autism Household
