Meet Chili. She’s a member of the Superbowl litter, born Feb. 5, 2012. She’s Sam’s new service dog partner! We will be meeting her on Jan. 22 when we begin our 2 weeks of training with her in Xenia.
As you may recall, a couple of years ago, we we blessed with Alveena, the world’s best service dog. We lost her last year due to a genetic kidney disease. It was absolutely heartbreaking for all of us but I believe Sam has suffered the worst. He can’t articulate his feelings but his behaviors speak for themselves. He used to lay on Ally to watch TV but since she’s been gone, he has developed a strange OCD behavior of rubbing lint balls on his left collarbone. He usually only does it when he’s bored or watching TV.
Because of all that we went through to keep Ally alive and then all we went through when we lost her, 4 Paws for Ability is graciously giving Sam another autism service dog. In January, we’ll be going back for the 2-week training with a new doggie. We don’t know our match yet but they’ve chosen a dog with just the right temperament and training to meet Sam’s specific needs and have been training the dog for the past several months based on the video and questionnaire we sent in months ago. I’m hoping this new dog will be as good a fit as Alveena was.
I’ve already “met” some of our classmates through Facebook. During the training, you’re spending 8 or 9 hours a day with these other families and you become very close. I am still connected to the families from our last class and will be forever. These long days together are emotional and exhausting but I’m mostly looking forward to it. Bob is planning to take some time off to go with us and Rachel will be along, too. We have to have two adults at all times; one to train and one to look after the child. I anticipate Sam being difficult most of the time, especially during transitions into the building in the morning and after lunch. Hopefully the two of them will bond quickly and it will already begin to help him cope.
One of the fun things about 4 Paws is the Pink Girlz. They are Karen’s (the owner) Pomeranians and they alone know which dog will be matched with each child. Because things happen, they don’t reveal the matches until about 2 weeks before class. But the game is to “beg” the Pink Girlz to reveal them early. Sometimes classes will send the girlz gifts, sometimes they write poems or letters, and sometimes they do nothing at all. The matches are revealed anyway. Well this time around, one of Sam’s classmates has an uncle who wrote a song for their fundraising efforts. They decided to amend the song to include photos of the classmates (who wished to participate) and send the song as our “beg”. I’m sharing it with you, below.
Just sat through the preliminary paperwork for a Functional Behavioral Assessment for Sam’s morning transition behaviors. It only took 2 hours. This behavior has been going on, basically, since like first grade. First he wouldn’t get on the bus so after many different behavior plans, we switched him to the “special” bus. The behaviors continued. We’ve had behaviorists from DoDD and South Community attempt to address the behaviors. We’ve hired our own providers. Finally the Regional Center sent the ACT team to analyze and make recommendations. Their solution (we’ll send the bus with his aide an hour after you’re already at work) was unacceptable. I ended up pulling him out and homeschooling him, which did solve much of the morning behaviors but he developed a new behavior, people avoidance. So now he’s at ABS and this learned behavior of transition avoidance may finally get the proper analysis and treatment it requires. Instead of lumping all the behaviors into “transition”, we’ll be breaking them down individually and analyzing each behavior’s “function”. For instance, sometimes his screaming functions as “task avoidance”. If I scream loud enough, they’ll back off on their demand. Other times, it’s “attention seeking”, nobody’s paying attention to me so I’ll add a scream and see if they notice. No one has ever really analyzed the behaviors individually before.
The difficult part will be attempting to modify the behaviors. Once we understand the function, we’ll be putting the behavior on extinction and/or teaching an appropriate replacement behavior. That requires causing the behavior to occur many times throughout the day so he has opportunity to learn the new behavior. What he has learned in the past is that if I raise the bar high enough, they’ll back down. So for instance, in the past, when the plan was to do continual prompting for avoidance behavior (put on your shoes, put on your shoes, put on your shoes…etc), he would raise the bar and engage in self-injurious, aggressive, or dangerous behaviors and we would back off the demand.
He’s been at this for a loooooong time, and the behaviors are pretty much ingrained. If we have any hope of changing them, this is the time. It is comforting to know that ABS wants long-term change as much as I do. Learning to transition will help in lots of situations (horse therapy, swim lessons, scouts, etc.) throughout his typical day, not just going into school. And they’re interested in more than just what directly affects them, which is quite different from public school. They are sensitive to the fact that we’ve had lots of “experts” and lots of different “behavior plans” in the past that haven’t worked. I have to trust that a real FBA is actually being performed on these behaviors and if we stick with the plan, true behavioral change will occur. The only real question is, how high will he raise the bar this time? Only time will tell! Stay tuned.
A melancholy thought for the day. When your children are little, say age 1 day through about 10 years of age, you experience conditional freedom. As long as your child is with your significant other, the sitter, or grandma; or at school, a friend’s house, or camp, you’re free. Until one day when your child reaches that magical age of maturity when you begin to leave them home alone for 5 minutes while you run to the bank, 15 minutes while you run to the carryout, and eventually hours while you are at work. And your personal freedom grows. Until one day you realize you no longer have to worry first about your child’s well-being before making plans of your own. You’re FREE.
Unless you have a child with exceptional needs. A child who will never reach that magical age of maturity. You must always consider care for them before making plans for yourself. And by default, this usually falls to the mother. I must plan everything I do around his care. But here’s the catch. When you have a child with exceptional needs, the care options are extremely limited. Not just any old babysitter can handle his needs. Nor would you trust just anyone with your semi-nonverbal child. So you get creative. I work part-time by design. I am blessed that my job allows me to work during the hours Sam is in school. I have Monday “off”. So if I can get Sam to school on Monday, I have 6 glorious hours to myself. 6 hours of freedom. The pressure to use that time wisely is incredible.
I usually schedule errands that he can’t handle for Monday. Doctor visits and haircuts also happen on Monday. Grocery shopping, answering emails, and phone calls happen on Monday, too. Painting, cleaning closets, and organizing; writing and practicing tap dance; vet and groomer visits; housecleaning and laundry; visiting my brother and planning the weekly schedule all have to happen on Monday. As you can imagine, that 6 hours flies by.
Sam is 15. Besides his autism, we’re dealing with typical 15 year-old behavior. He wants to sleep in, not be seen with his parents, and, basically, not do anything we want him to do. I want the freedom my friends have. I want to go out to eat, attend church, exercise, have a date night, drink coffee in a bookstore, or shop (oh glorious shopping, how I miss thee). I want to meet my friends for lunch or coffee. My well-intentioned friends say “Bring him along!”. If I even could get him to come along, the scene when we got there would be ugly. He doesn’t want to be sitting with his mom and her friend in a cutesy coffee shop and he’s not afraid to let you know.
You would think Mondays would be my “fun” day but in reality, it’s the day I do all the things he can’t tolerate. Like the dentist. Friends say “Oh, you’re so lucky, you have Monday off.” Little do they know I can’t wait to get to work on Tuesday so I can relax. When I’m at work, I know where my son is and that he’s well-cared for. Work can be stressful but its a different type of stress. It doesn’t require negotiating with a 15 year-old so we can stop and pick-up toilet paper on the way home from therapy. It doesn’t involve rolling down the windows in the car so they don’t get kicked out at school drop off. And it doesn’t involved the intense worry I feel when I see him having a seizure or a migraine and I’m powerless to help him.
Am I jealous when my friends “check in” at a winery, fine restaurant, or church? Ashamedly, yes. I’m ashamed because I know it’s a sin to covet thy neighbor’s house. But how can I not envy their freedom? The juggling act that I have to perform to do the simplest of activities is unfair. We can’t just up a attend a street fair, grab a bite to eat, or linger in a store. We have been talking about checking out the new Menard’s ever since it opened. We haven’t made it to Ikea yet, either. So just get a sitter and go, you might say. WE CAN’T. We have to reserve our sitter time for the important stuff; like IEP meetings, work, and illness. We can’t squander it on frivolity like fun. And we only have Rachel and Grandma in our arsenal to begin with. If they’re unavailable, we’re out of luck.
I know I’m blessed to have a partner to tag team with but we’re at a place in our lives where it’s less stressful to stay home than try and go out. The few times we do make plans, we know we’re facing hell when we get home. He needs his meds, his sleep, his routine. If these get interrupted, he can be off for days.
I know my friends don’t get it and that’s okay. But if they’d just take a moment and remember what it was like when their children were babies and how difficult it was to get away, both physically and emotionally, they’d have a small clue.
If you have a special needs child, a medically-fragile child, or a sickly relative, I’m sure you’ve encountered the “medically-induced headache” that comes from trying to figure out who treats what and who oversees which medications. It’s a nightmare!
Sam recently began having seizures. Enter a new specialist stage left. This specialist (an Epileptologist) can treat the seizures and but has little experience with migraines, anxiety, or behaviors. His Neurologist who consults with the Epileptologist can treat the migraines but not familiar with anxiety or behaviors. His Psychiatrist can address the behavior and anxiety but wants to use a medication the Epileptologist suggests we remove. We can no longer afford the Biomedical Doctor who has him on several supplements meant to address all the above. His pediatrician is there for sore throats and ear aches. Have a headache yet?
So I’m talking with a friend whose son is a lot like Sam, autism-seizures-behaviors-anxiety, and she’s using a holistic professional in Tennessee who prescribes elixirs based on a saliva test and a questionnaire. It’s all natural so she can double the dosage if he’s struggling and even apply it topically if he’s unwilling to take it orally. The prices are reasonable. She has seen good results and like me, doesn’t want her son on all kinds of medications.
So here’s my quandary. He’s on Gabapentin (which we’re weaning him off of), Amitriptyline for the migraines, and Topamax for the seizures. All of which can be overseen by the two Neurologists who consult with each other. Check. But I also want to give the holistic approach a try, as well. I did request an information kit from her so when we receive that, I can send the saliva test away.
If we prioritize his needs:
3. Behavior (which we believe directly related to anxiety)
it seems logical to maintain the medications for seizures and migraines from the Neurologists while we attempt to treat anxiety and behaviors holistically. IF the Neurologists are open to that approach. If they aren’t, I’m back to square one. And what about all those supplements? Aren’t they helping in some way we just can’t see clearly? Oh why does this all have to be so complicated? NOW do you have a headache?
Public school was good enough for me and my husband. We both saw value in our kids living in the “real world” like we did. Catching the bus with the neighborhood kids, learning to get along with lots of different people, and finding where you fit in. Although our older two struggled academically in the years before graduation, it wasn’t the school’s fault. And they both left high school with college scholarships, lifelong friendships, and a sense of themselves and how the real world works. But for Sam, public school isn’t good enough. Our local district doesn’t have a place for him. He doesn’t belong in the regular classroom full-time and he doesn’t belong in the resource room (aka: multi-handicapped room) full-time. In elementary school, meaningful inclusion was easier. He had a group of friends, called Buddies, who would accompany him to lunch, recess, gym, art, and music. The entire school knew Sam and looked out for him. It was a nice cocoon.
Things changed drastically in middle school when the students from all the elementary schools become integrated and students begin changing classes. It became a lot harder to include Sam with his peers. The pace is much faster and with the chaos between classes being overwhelming, Sam would be accompanied to the locker bay once classes were in session. It was only for the experience of accessing a locker as he did not change classes. He was assigned to the resource room full-time. Though “meaningful inclusion” was written into his IEP, there were fewer and fewer opportunities for such, and therefore, book buddies would come to the classroom to read with the students. Adapted art, music, and gym were conducted as a class apart from typical peers. Lunch often occurred in the classroom, as well. On Fridays, they had popcorn for sale and Sam was the official greeter, welcoming those who wanted to buy popcorn. This was often his only interaction with “the outside world”. I became more and more frustrated as he became more and more isolated.
Among his classroom peers, he was seen as a leader. He would often arrange the chairs for circle time, assist the other students when needed, and be asked to help the teachers from time to time. But he had no typical peers to model. And being the “quiet one” among his classmates, who do you think got the least amount of attention? To quiet my protests that Sam wasn’t working on academics, they sent home a video. In this video, Sam is instructed to do a certain number of math problems with a calculator, then the teacher leaves to attend to the other students. Sam does his set number of problems then looks around for instruction. Getting none, he proceeds to do the remainder of the paper, then sits waiting. And waiting. Another student with multiple physical difficulties can be seen in the background of the video and he begins to cry. After a few moments, Sam summons an aide for the student, and another to help. This video that was supposed to show me that Sam was doing academics only served to reinforced my suspicions that he was spending a lot of time doing a whole lot of busy work and nothing else.
Sam had always had difficulty transitioning to school but in his final year in public school, things became unbearable. He was kicking holes in the wall, running out of the house toward the street, and lashing out at us. We called in the special autism team from the Regional Center to observe and give recommendations. Their suggestions weren’t acceptable and I ended up pulling him out of school. I had never intended to homeschool but that is where I found myself. After about 6 months of homeschooling, I realized he was no less isolated than he had been at school and I looked for another alternative. That’s when I found ABS.
Applied Behavioral Services recently sent home a progress report. I was used to seeing “making adequate progress” from public school progress reports, although who’s idea of adequate, I wasn’t sure. It certainly wasn’t adequate to me. He has been “making adequate progress” on the same skills for years. But on this report, I saw something different. This skill has been mastered. It has always been important to me that Sam learn to read and do simple math. In additional to learning personal care and improving his verbal skills, those two academic skills seemed to me to be life-altering. If one can read and count, one can be independent in so many more things. So ABS began working on those two skills right away, first teaching the underlying skills that were missing and then building on them. Sam is now read “aa” level books with minimal prompting and learning touch math. He has learned more in his few months at ABS than in two years of middle school. I am very pleased. I can finally see the possibility of him reading and doing math becoming a reality.
The picture at the beginning of this blog post is something he brought home from ABS. It shows me 3 things. He is doing art. He is counting. And he is writing. It’s a simple picture with a huge message. He is capable.
“We went to three different stores before we found the right shirt and tie for Billy.”
“Hope the flowers we picked out match her gown.”
“John and his date before Homecoming.”
Facebook is plastered with status updates and photos this time of year of happy teenagers heading off to Homecoming, their braces gleaming in the sun. I remember the excitement of going to the Arboretum to capture the moment before my older son or daughter took off for the dance, another milestone behind us. Tears in my eyes as I see the first glimpses of adulthood peeking out.
This year is different. This year, it’s the kids who grew up with Sam that I see standing next to a pretty girl or handsome boy, looking more grown-up than they should. But I won’t be going to the Arboretum this year to take pictures of Sam going to the dance. Because Sam won’t be going to the dance. Oh, if he had any inkling of what the dance was all about, or showed the slighted bit of interest, I’d be elbowing my way through the suits and tie racks to get the best of the best for him. And if he didn’t have a date, I’d be his date. We’d have the best time, ever.
But he doesn’t. And this is another one of those milestones that takes me right back to stage 4 in the stages of grief, depression. My son will never experience getting all dressed up and nervous to take a girl to a dance. He won’t roll his eyes at me for making him pose just one more way for a photo before he leaves. He won’t take his date to a Mexican restaurant before the dance, confused whether he’s supposed to pull her chair out for her or not. He won’t stand with his buddies refusing to dance because it’s not “cool”. And he won’t come home exhausted at the end of the evening with a big grin on his face and tell me it was “lame”.
My next-door neighbor’s grandson, Trey, used to catch the bus with Sam. He’s a year or so older than Sam. He’d walk him across the street and promise to look out for him on the bus. Trey is driving. Sam will never drive.
The boys who were in Sam’s buddy group all through elementary and middle school change their Facebook status from “single” to “in a relationship” and back again constantly. Will Sam ever even have a girlfriend?
My only salvation is that I’m mourning something he’s blissfully unaware of. It doesn’t make it hurt any less, but if he had any idea what he was missing, it would be unbearable. I have friends whose children do know what they’re missing and I hurt for them. You spend years convincing your child that he’s just as capable as his peers, only to tell him he’s not ready to drive when all his friends are taking lessons. Or your daughter sits pining for the cute boy in school to ask her to the dance when you know in your heart of hearts she’s virtually invisible to him and it’s never going to happen.
And I know at this age, the milestones will be coming more quickly. There will be driving, dating, dances, class rings, senior portraits, and graduation. There will be first jobs and senior skip day. Sam will experience none of it. I will mourn all of it.
If your child is experiencing Homecoming this year, congratulations! Please don’t take a single second for granted. You don’t know how lucky you are.
For several years, I’ve realized that most of Sam’s behaviors, including the aggression, were rooted in anxiety. Transitions are especially difficult for him and I believe it’s due to anxiety about leaving home, leaving mom, leaving comfortable activities and entering the unknown. Take school for example. Though he was just there yesterday, today comes with a whole new set of expectations and uncertainties. Who will be with me today? What will we be doing? What will be expected of me? And the more anxious he becomes, the more irritating it is to have people talking to him. The simple “hello’s” in the morning can be overwhelming.
I have been working hard to address the anxiety in Sam’s world with visual supports, medication, and providers. New this school year, Sam will have a social worker who will be helping him address his own anxiety. She’ll be working with him to identify facial expressions, recognize his own emotions, and learn stress-reduction techniques he can use to calm himself in stressful situations.
Many people, including professionals, don’t realize how debilitating anxiety and panic can be. This is more than just being 15 minutes late for an appointment. This is hanging off a cliff by your fingernails kind of anxiety. I no longer downplay Sam’s anxiety or tell him he shouldn’t be anxious. As soon as I recognize the signs, I do what I can to remove him from the situation or intervene. It isn’t going to go away by itself.
This article from the Indiana Resource Center for Autism is excellent in explaining anxiety and panic struggles and how to treat them. So the next time you’re with someone having an anxiety or panic attack over something seemingly simple, remember, to the individual experiencing it, it is VERY REAL. As real as hanging off a cliff by your fingernails.
Anxiety and Panic Struggles
Contributed by Kim Davis
Anxiety is a word that is often associated with individuals on the autism spectrum. If one looks up the word anxiety in the dictionary, you will find many definitions, all relating to an intense feeling of uneasiness or fear in response to a real or imagined threat. For anyone who has witnessed or experienced an anxiety or panic attack, that definition lacks the potency and impact that an actual anxiety or panic attack creates. After recently supporting a loved one through episodes of panic and intense anxiety attacks, I began to pay more attention to the word anxiety or anxious when they were used in conjunction with a student with an autism spectrum disorder (ASD). For years I’ve witnessed these words used to describe the people I was supporting. I know now I had not given the descriptors anxiety/anxious enough attention. I now view scenarios through new lens. As I witnessed my loved one go from being an intelligent, verbal, physically capable person, to one who could barely utter a word, control her crying, body movements, and her real or imagined fear, I realized that anxiety is all encompassing and can paralyze anyone in an instant. It was also apparent that simply saying, “You are okay and you don’t need to worry” was never enough. The anxiety and panic was a more powerful emotion than simple words could eliminate. It was frightening, frustrating, horrifying, and sad to witness and experience. Both my loved one and I felt completely out of control and helpless to stop the eruption of emotions and behaviors.
It took time, but once the panic and anxiety were under control and life was beginning to get back to some state of normalcy, I began to think about how many times anxiety appeared in the IEPs of students with ASD and wondered how often is it truly addressed? As I had witnessed and experienced firsthand, anxiety and panic are debilitating, to even the most capable person.
According to the Anxiety Disorder Association of America (ADAA), anxiety disorders affect 40 million US adults age 18 and older and affects one in eight children. Anxiety disorders have the potential to impact many people on the autism spectrum. “Once a general anxiety disorder develops, it tends to become chronic (Autism Help)” and will interfere with how the individual functions at home, school, or in other activities of daily living. Reassurance and comfort are not enough to calm the fears.
Dr. Tony Attwood has states that “Autism is anxiety looking for a target. Autism and anxiety go hand-in-hand. Autism affects a person’s ability to communicate with others or to understand the world around him, and that’s bound to cause anxiety (Evans, 2006)”. The numbers of individuals with ASD who experience anxiety may be as high as 80% according to Eric Storch, PhD, associate professor of pediatrics and psychiatry at University of South Florida Health (Nauert, 2009). Anxiety attacks trigger distress and impairment over and above that caused by an autism diagnosis alone he continued. Anxiety can affect adults with ASD as well as children and adolescents (Autism Help). These statements would indicate teachers and parents who support someone with ASD are very likely to also provide support to someone who experiences anxiety. As anxiety becomes more prevalent among people with ASD, those who provide support must have a general knowledge about anxiety, what symptoms to look for, and what might help when anxiety overwhelms someone.
- Anxiety: What an Individual May Be Experiencing or Feeling
- What Triggers Anxiety for an Individual with ASD
- Providing Support
- Classroom Ideas to Reduce Anxiety
- Treatment Options
It is critical to realize that when someone is anxious, talking at them can increase their anxiety and behaviors. More visual, less verbal is a good rule of thumb. Both home and school could have small white boards available that can be used to write simple and concrete messages to the individual, such as, you are safe no one will hurt you or take slow deep breaths instead of merely talking to the person. The written message is there for them to see as they need it. Often, teachers and parents can exacerbate an anxious moment by pushing too hard for immediate relaxing of the body or verbal responses from the student. Be quiet, reassuring, nonconfrontational, and calm each time you are needed to support an anxious student. Remember that the individual is not thinking clearly and you will have to become their rational, calm support. “That means that you might sit near them, not demand any eye contact, be genuine in your caring and reflect that caring in your vocal tone and pace. Be sure to allow for processing time and when appropriate use a bit of humor to ease the pain (Page, 2009).”
Anxiety and panic are real and a person cannot simply relax or snap out of it on command. The fears encompass the person completely. They need compassion, patience, reassurance, and true care from family, friends, teachers, therapists, or staff people who are in their lives. Because someone has ASD does not make the anxiety or panic any less real to them. For them, due to the impact of their ASD (difficulty understanding abstract ideas or feelings), the anxiety and panic might become greater. Support people must begin to pay closer attention to the words anxiety, anxious, panic, etc. when they appear in reports or IEPs. They are not just words. They indicate real emotions that impact a person completely and can inhibit them from performing even simple tasks. In fact, the anxiety or panic may be more debilitating than their ASD. It is up to those who support individuals with ASD to be aware of anxiety and panic struggles and more important learn the best ways to provide the type of support that is truly helpful and allows the person to move through the fears and trust that they are safe and in good hands.
References and Resources
1. Anxiety Disorders Association of America (http://www.adaa.org)
2. Bellini, S. (2004) “Living in fear: Anxiety in adolescents with autism spectrum disorder”. The Reporter, 9 (3), 1-2.
3. Edington, Chuck, PhD. “Emotional Regulation and Anxiety Management in Autism” . http://www.okautism.org. Presentation at Oklahoma Autism Network, Autism Toolkit Series: Life 1st! September 7, 2010. Accessed July, 2011. http://www.okautism.org/documents/EmotionalRegulationAnxietyManagementPresentation.pdf.
4. Evans, Rachel. “Autism Anxiety Overload”. http://ezinearticles.com/ November 27, 2006. Accessed July 2011, http://ezinearticles.com/?Autism-Anxiety-Overload&id=369821.
5. Nauert, Rick. Behaviorial Therapy for Anxiety with Autism. http://psychcentral.com/, October, 2009. July, 2011 http://psychcentral.com/news/2009/10/30/behavioral-therapy-for-anxiety-with-autism/9239.html
6. Nelson, Dave. “Autism and Anxiety”. http://www.divinecaroline.com/. April 15, 2008. Accessed June, 2011. http://www.divinecaroline.com/24169/48021-anxiety-autism.
7. “Anxiety and Autism” (July 22, 2009). Page, Louise. Accessed June, 2011. http://www.articlesbase.com/disabilities-articles/autism-and-anxiety-1059884.html#axzz1QgX5LpTH.
8. “General Anxiety Disorder”. June, 2011. http://www.autism-help.org/comorbid-general-anxiety-disorder.htm (reproduced with permission from a range of fact sheets available at http://www.autism-help.org).
9. “Anger & Autism Spectrum Disorders. http://www.autism-help.org/index.htm. 2008. Accessed July, 2011. http://www.autism-help.org/adults-aspergers-anger.htm. (Reproduced with permission from a range of fact sheets available at http://www.autism-help.org).
10, “Anxiety in Adults with an Autism Spectrum Disorder”. http://www.autism.org.uk/. 2010. Accessed July, 2011. http://www.autism.org.uk/living-with-autism/understanding-behaviour/anxiety-in-adults-with-an-autism-spectrum-disorder.aspx.
11. National Institute for Mental Health website for Anxiety disorders: http://www.nimh.nih.gov/topics/topic-page-anxiety-disorders.shtml.
12. “Interview with June Groden”. (November 1996). Autism Research Institute. http://www.autism.com/fam_page.asp?PID=367.
13. Panic Attacks and Autism Spectrum Disorder”. (2008). Autism Help. Accessed June, 2011 http://www.autism-help.org/adults-panic-attacks.htm. (“Reproduced with permission from a range of fact sheets available at http://www.autism-help.org“).
14. “Sample Accommodations for Anxious Kids” (2009). The Children’s Center for OCD and Anxiety. Accessed February 29, 2012. http://www.worrywisekids.org/schools/sample_accomodations.html.
15. Stress and Coping in Autism (2006). Edited by M Grace Baron, June Groden, Gerald Groden, & Lewis P. Lipsitt. Oxford University Press, NY. NY.
Autism Society of America: (http://www.autism-society.org/).
Kim, Joseph A., Szatmari, P., Bryson, S.E., Streiner, D.L., Wilson, F.J. (June 2000) “The Prevalence of Anxiety and Mood Problems among Children with Autism and Asperger Syndrome”. Autism, vol. 4, 2: pp. 117-132.
Rudy, Lisa Jo. “Mood Disorders and Asperger Syndrome”. http://www.about.com/. Updated July 06, 2008. Accessed June, 2011.
Rudy, Lisa Jo. Autism. “Anxiety and Nightmares”. http://www.about.com/. Updated December 17, 2010. Accessed June 2011, http://autism.about.com/od/copingwithautism/f/nightmares.htm.
“Stress and Autism Spectrum Disorders”. http://www.autism-help.org/index.htm. 2008. Accessed June, 2011. http://www.autism-help.org/adults-aspergers-stress.htm (“reproduced with permission from a range of fact sheets available at http://www.autism-help.org“)
All along this journey through Autism, God has put people in our path to help us. In the thick of things, I may be flailing around in the middle of my ocean of stress, trying to keep my head above water and gasping for breath, and not notice. But later, when I have a moment to reflect, I realize how life just sort of fell into place. I meet someone who knows someone…or I get a mysterious phone call out of the blue….or something else ironic will happen that later makes goosebumps stand up on my arms. I know it was God and I am overwhelmed with a grateful heart.
As you probably know, we recently went through a rough patch with Sam shattering windshields, having seizures, and generalized anxiety that was overtaking both of our worlds. I asked Sam’s DoDD case manager to post a help wanted notice to providers asking for help in the mornings with transition. I got a LOT of responses. Mostly agencies who do respite care or companionship care, maybe not even experienced in autism. I also got some independent providers but none of their responses felt like a good fit. Then one day, I get an email from a man named Matt who simply said he was responding again to my ad, that he had experience with male adolescents with behavioral problems. Something told me he was the one so I contacted him and set up an interview. The interview went well and I was pleased to find that he was a good-sized man, sort of the same size as my husband, but gentle in nature. I hired him and he started week before last. The goal the first week was just to bond with Sam. He followed us to school in his car and assisted as needed. He and Sam would do puzzles or computer games before school to keep Sam’s mind occupied so he didn’t perseverate on school. He was still anxious at transition but didn’t get physical. Last week was our first entire week without transition behaviors. Matt was still following us to school. Earlier this week, I noticed Sam cuddling up to Matt as they sat on the floor doing a puzzle. He greets Matt warmly in the mornings and is eager to talk with him. Yesterday was our first real issue with transition since Matt started and he immediately calmed his voice and talked soothingly to him. Within minutes, Sam walked into school, anxious but not acting out. Today, Sam chose to ride to school in Matt’s car! I have to admit, I missed the little bugger, but I followed behind in my car and parked to see what happened. When Matt pulled up, he and Sam both got out, got his backpack, and Sam walked in with his teacher. He was yelling “No turtles! No frogs!” but he was going in under his own power. Matt and I gave each other a thumbs up. It seems to be working. Thank you God.
Someone else who God has placed in our path, Jennifer Dearth at South Community Behavioral Health. She meets us at Elliott Stables each week to help Sam with the horses. She’s so bubbly and eager to learn all there is to know about the horses and Sam. He’s been grumpy at the stables due to the heat but she’s starting to know when to push Sam and when to back off.
I so often feel like I’m on this road alone, with no idea which direction to go, as many parents of special needs kids feel. There’s no handbook for this and few who have been here before us to guide us along the way. I guess I’m your typical stubborn autism mommy when I say that I’ll fight tooth and nail when I know what needs to be done but I wait until I’m completely overwhelmed and lost before I’ll turn to God for help. I used to watch my children struggle with something, silently pleading with them to ask me for help. I’m sure that’s how God feels many times with me. Just ask!!! Yet he made me, he knows how stubborn I can be!
So many blessings in my life. My daughter Rachel whom Sam adores. My Facebook friends who talk me off the ledge more times than they’ll ever know. The other parents at ABS who have seen me struggle and have stopped to hug me just when I needed it most. The fantastic staff at ABS who are willing to work with my outside-the-box ideas. My husband who has listened to me sob into the phone after a particularly bad drop off and listened to me go on and on after a good one. The professionals who have become my friends and I can email them with any question.
Which brings me to my last irony of this post. I do webinars for Moms Fighting Autism. My next webinar will be with Caren Haines, the author of Silently Seizing. In talking back and forth with her about my son and his new seizures, she offered to talk with me pro bono. So on the way to the psychiatrist in Columbus, I called her and we discussed Sam’s seizures. Then during my visit with the doctor, I was able to discuss Sam’s seizures and get on a path to treating them. Thank you again, God.
For the past week, we’ve been on a Cat in the Hat (Mike Meyers version) marathon. After being subjected to it over and over and over….it occurs to me there are some distinct similarities between the Cat and an autism mom. For instance, he has a hat full of magic tricks, much like the bag of tricks autism moms carry around (both real and metaphorical). He’s flexible, able to adapt to the situation at hand. Autism moms always have to have a plan B, C, and D, E, F up their sleeve at all times. And both can make cupcakes out of anything. Anything? Anything! Dr. Seuss was a genius.
Okay, so maybe the cupcake thing is a stretch but the bag of tricks is dead on. It’s been a trying month since I last posted to this blog and I’ve had to dig deep down into my bag of tricks. So let’s go back and see what’s happened.
We did our first Muddy Buddy’s Jeep Wrangler club event on June 16th. It was a Relay for Life Covered Bridge Tour. We drove the jeep over 100 miles and saw lots of different covered bridges. It was really cool being part of the group and we enjoyed the day immensely. Sam rode in the front seat, I in the back, and he loved it. The only time he got nervous was went we were going through a big mud puddle. He said “No puddle Sam!” but it was too late, we were already in it.
Four days after that, I took Sam to Lake Erie by myself to visit with my sister and brother-in-law. We stayed at the Best Western (which should change its name to So-So Western for not having an elevator. I had to drag my luggage up to the second floor). They live in a boat on Lake Erie half the year and a camper the other half. This happens to be boat season. I was worried how I might get Sam onto the boat and figured we’d be relegated to the picnic table on the dock for the duration of the visit. I was mostly right. It was the start of the heat wave and it was unbearably hot from about 10AM-5PM. There was a pool at the hotel but it was in the front parking lot, highly visible from the street and you had to cross new blacktop to get there. Not many people were brave enough the week I was there. Certainly not Sam and I. He was in absolute denial the first 2 days we were there, asking to go home and see Baby Dog constantly. I took him to Breakfast at Frisch’s the next morning and he wouldn’t eat a thing. He screamed when we arrived at the boat and I couldn’t get him out of the jeep. He finally did join us at the picnic table but wouldn’t budge, watching the drawbridge go up and down and listening for trains. Day 2, I woke with a bladder infection and my neck out of whack. I decided to drive two buildings over and get breakfast, then to Kroger to get meds for myself. Sam completely flipped out because McDonald’s doesn’t serve cheeseburgers for breakfast. I offered to get him a burger to microwave at Kroger but it was too late. I stopped at the gas station and told him “You need to calm down because I can’t take you back in the hotel screaming.”. As I was standing beside the jeep filling the gas tank, I heard him shatter the windshield with his foot. Again. There I was, miles from home, shattered windshield, empty bag of tricks. I didn’t want to tell Bob Sam had shattered his second windshield without being able to say I had it under control so I went back to the hotel to call a mobile repair service. I can handle this, I reassured myself. Sam wouldn’t get out of the blazing hot jeep so I went in and asked the front desk for a phone book. I sat in the jeep with the engine running, A/C on, calling every repair place in the book and nobody could fix it until Monday. Ok, now I needed help. I called Bob and got the reaction I expected, then he took a deep breath and said he’d make some calls and call me back. I called my sister and told her the situation, then asked for some medicine. I couldn’t even get inside Kroger for meds. By this time, Sam had calmed enough to go into the hotel. I packed our bags, not sure I was strong enough to do 2 more days of vacation on my own with him. God bless my sister. She showed up with meds and realized she had to adjust her expectations for this vacation. There would be no Jet Express to Put-in-Bay, no sailing on the lake, and no big adventures. She suggested we go to the African Wildlife Safari drive-thru and just do the drive-thru…IF Sam agrees to ride in her back seat, far from the windshield. I grabbed my 3 bags of carrots and we were off. I rode in the back seat with Sam and out my window, I fed the animals. Sam loved it. My sister swore at the big scary animals salivating all over her clean Jeep Cherokee. It was great. One successful outing under our belt, we braved Frisch’s again and this time Sam was able to eat. We pulled through McDonald’s and got chocolate chip cookies to bribe him onto the boat with. It worked. He climbed in where it was cool and watched back to back movies all afternoon. We were finally able to relax a little. The next day we tried the Train-O-Rama place. Sam was anxious being in a new place but did alright. My sister had learned that when he starts escalating, its time to go, thank goodness, so we were able to get out without a meltdown. We went back to the boat and Sam watched movies in the hull while my sister and I sat in the pulpit of the boat and talked all afternoon. It was the best 4 hours of the trip. The next morning, Rick taped up the windshield and we set sail for home (pun intended). My sister wanted to meet for breakfast or lunch before we left but Sam was so focused on home there was no way. I pulled through Burger King on the way out of town and got him breakfast, which he held all 3 1/2 hours home. I’m glad we went and I’m glad I got to visit with my sister, but never alone again.
Following the second broken windshield, I decided we needed a med change so I talked with Dr. Ramadan who increased his Gabapentin. We went the next Sat. for a blood draw and the phlebotomist had trouble finding a vein. He finally stuck him in the hand, not where I had put the EMLA cream. Ugh.
I traded vehicles with Bob for Sam’s first day back to school, with the expectation that he would ride in the back seat. He was so mellow leaving the house, I didn’t protest when he climbed in the front seat. Got to school, he escalated and had to be physically transported, and in the process, shattered Bob’s windshield. The third windshield in a month. I, definitely, didn’t want to tell Bob his windshield was shattered, or that I was too stupid to put Sam in the back seat. I was suddenly trying to figure out how I could hide it from him and get it fixed without him knowing. Then reality hit that I didn’t have the money to pay for it myself. I called Bob. You can imagine his reaction.
As luck would have it, a nasty storm came through the midwest, causing a lot of power outages and wind damage. I couldn’t get the windshield fixed for 2 weeks. In the meantime, Sam is riding in the back seat, exclusively. I fear he’s going to break the seats or sunroof we keep covered if he doesn’t cool it.
My August webinar will be with the author of Silently Seizing and in my conversations with her, she believes we should be treating the seizures as they could be damaging to the brain, AND leading to behaviors. We saw Dr. Ramadan again last week and I discovered I was nearly overdosing him on the Gabapentin. Dr. DeMio had prescribed capsules, Dr. Ramadan had prescribed liquid. I sent the liquid to school but not knowing the liquid/capsule equivalents, I was giving him too much at home. He ordered more liquid and told us to forego the capsules for now, so as not to confuse ourselves. He added Risperadal back in. So we’re treating the seizures, migraines, and behavior now, hopefully. We go back in a month. As soon as the bloodwork comes back, I’ll be going over those results with Dr. DeMio AND Dr. Ramadan. It’s confusing having so many doctors on the case. Dr. Ramadan did express concern over the physical transports in the morning and taking his reaction, mixed with my own, I finally put a stop to physical transports. This made transition difficult Wednesday morning as I was left on my own without a plan. During his protests, he had a pretty good seizure which is difficult to watch, but it didn’t interrupt the behaviors. After about 2o minutes, a teacher came out with a Star Wars ABC book and enticed him to look at it. Once hooked, she got him to walk into the building.
I also hired a man to help me in the mornings with transition to school. His name is Matt and he’s probably early 30′s. He’s been a provider for 2 years and is taking classes to teach Middle School. He has experience with Sam’s age group, males, and behavior challenges. He started Thursday morning. I had written a social story, introducing Sam’s new friend Matt, and how he’s going to help us get to school safely. When Matt came in, I expected protests but Sam didn’t make a peep. I had advised Matt to approach quietly and limit verbalizations and he did a terrific job with that. He and Sam played on the computer and then Matt followed us to school. Sam watched him the whole way saying “Turn Matt!” When we arrived, he unbuckled, jumped out, yelled “BYE!” and slammed the door shut. I didn’t know what to do. Matt had parked and approached my window for instructions but I just apologized that we didn’t have behaviors and suggested maybe tomorrow. Sometimes I can’t believe the things I hear coming out of my mouth.
Friday, Sam welcomed Matt with a “hello!” and they did a puzzle before we left for school. Sam had just a little grump when we arrived, then remembered Matt had followed. He took Matt in and showed him his classroom, transitioning easily. I won’t have Matt on Monday or Wednesday of the coming week so it might be a couple of difficult transitions. So far, so good.
The ultimate goal would be to have Matt transport and walk him in if he’s willing. Can’t take a chance on Sam freaking out on Matt or damaging his vehicle, so until I feel like we’re past that, we’ll both keep driving to school. I keep offering Sam the opportunity to ride with Matt but so far, no go.
It’s amazing to me how much things can change in a month. New behaviors. New meds. New providers.
We took Sam to see Men In Black III last weekend with Seth. He enjoyed it so much, he was excitedly exclaiming throughout the movie in his outside voice. But others, like the man sitting in front of Sam, didn’t appreciate it as much as we did. He doesn’t know how much we enjoy moments where Sam is completely content and happy. How rare they are. And how much we had been through in the past month. He kept turning around and looking at us, annoyed. No matter that the adult couple behind us kept talking. He was annoyed at the autistic child who, for this small moment in time, was enjoying the movie more than anyone else in the theatre. Was I going to shush him? Not on your life.