Keep Calm and Remember Sensory!

As a person who has a high anxiety level, I understand how difficult it can be to navigate through each day with all of the feelings associated with anxiety: insecurity, fear, self-doubt, worry and stress. I imagine for children on the spectrum, this is multiplied greatly by the lack of coping experience.

I have experienced time and again how my stress and anxiety negatively affects my son. For example, if I'm rushing on a school morning and the kids are moving at their own pace, my anxiety level raises. I begin to get upset, raise my voice--even yell. Instead of calming myself, I've now created an atmosphere of anxiety that sets up a bad day for everyone. To help with this, I try to prepare the night before by packing lunches, setting out clothes, putting out cereal bowls, etc.

I think the key to reducing the stress is planning ahead. Last year, I would get Ben up early and do sensory exercises to help him regulate himself before school. He would jump on the trampoline, swing, do jumping jacks, etc. Then, we'd do some deep breathing and try to relax before entering the school.

I also asked teachers to help. They allowed Ben to roll on a therapy ball, or take time-outs. They allowed him to use a computer instead of writing assignments, since handwriting causes anxiety.

One of the first books ever recommended to me was "The Out of Sync Child Has Fun", which offers great resources for kids dealing with sensory processing challenges. Understanding the link between sensory processing and anxiety helped me find ways to prevent some of the anxiety and respond to it while it happened. There are many resources that offer practical ideas for home and school. "My Sensory Book" offers suggestions for different sensory systems: tactile, vestibular, proprioception, visual, auditory, gustatory and olfactory, and illustrates how children can learn to cope more effectively. 

Websites like Specialism also have sections dedicated to sensory processing with valuable information for different settings, sensory challenges and age groups. 

Practicing conscious calming for myself and Ben has made a huge difference. It's not always easy, but it always works. 

Success in the Classroom Starts with Collaboration

One of the biggest lessons I've learned in my journey with Ben and school is how to collaborate with teachers. At the beginning of each school year, I met with Ben's teachers to go over his history (medical and academic), his interests and dislikes, social issues and anything else I thought would help them and help Ben have a successful year.

I continued to stay involved throughout the year, asking for regular updates, visiting or volunteering in the classroom and offering any pertinent information from Ben's therapy sessions. Even though I dealt with frustration from time to time, it was very helpful to establish a rapport with the teachers and letting them know you're there to support them.

I took a lot of advice from Ben's therapists and asked for certain things that weren't necessarily in his IEP, but that would help throughout his day. Here are a few:

1. Sensory Input

 Kids on the spectrum need sensory input. They don't seem to get enough of this in school. Whether it's auditory, visual or physical sensory input, it can help your child regulate himself. This can kids focus and attend better, and help provide the stimuli needed to calm anxiety--which can lead to unwanted behaviors. For Ben, he needed regular sensory breaks throughout the day. Sometimes did jumping jacks in the hallway or rolled his body on an exercise ball. Sometimes he sat on the exercise ball to bounce.

He also became very overwhelmed with the noise of the lunchroom. I sent in noise-cancelling headphones he was allowed to wear during lunch, and sometimes the teachers would allow him to eat his lunch in the classroom while they worked. If you know your child's particular sensory needs, find ways to work with teachers to incorporate sensory activities into his school day.

2. Help with Transitions
Ben has always had trouble with transitions, The need for "sameness of routine" is very typical for kids on the spectrum, so even the smallest transition from one activity to another can provoke a meltdown. To help with this, I asked for visual schedules on Ben's desk that showed the progression of his day to help him remember what would happen next. We also tried timers, and verbal reminders ("In five minutes, we'll be putting our work away and going to lunch"). At one point, the teachers even allowed Ben to remain in his homeroom classroom to do his reading work instead of leaving to go to that classroom. It helped a lot.

3. Motivation to Learn
Since kids on the spectrum struggle with non-preferred activities that are required of them, it can help to ask for slight modifications. Ben hates to write, so I asked if he could use a computer to type his work. Ben loves reading, so I asked if he could go to the bookshelf and read for a few minutes as a reward for completing non-preferred activity. When he was younger, Ben was really into ocean life. I used that as a motivator. I printed out ocean-themed math worksheets, we did reading activities with ocean themes, etc.

4. Calm Down Techniques
The biggest hurdle was getting Ben to calm down when he got anxious. Whether it was reading aloud, doing long math problems, joining circle group, etc., there were certain things that set Ben off, inevitably leading to a meltdown. Because some teachers perceive this as "bad behavior" they would discipline Ben, and the situation would escalate, and the full "fight or flight" reaction would occur. Instead of disciplining, explain to teachers what's happening and suggest a "safe" spot for the child to go to until he calms down enough to talk about the situation.

5. Be Clear and Concrete
High-function ASD kids tend to interpret speech literally. Idioms usually don't work because kids don't understand them. Things like sarcasm and double meanings also cause Ben a lot of grief. It helps to explain this to teachers so you avoid frustration from both sides.

The best thing to do is offer and ask for frequent communication, beyond what's required by a 504 or IEP. For great information about helping teachers work with your child in the classroom, visit the OASIS website and read the work of Tony Attwood, a clinical psychologist and expert on Asperger's Syndrome. 

Pressure. Pushing Down on Me, Pressing Down on You...

As a parent of an ASD child, you have a wee bit more pressure than most parents. Divorce rates tend to be higher due to stress in them family. Income levels and careers are often jeopardized because parents need to quit their jobs or drastically reduce their hours. Internal family life may suffer if siblings become resentful over the attention paid to a special needs child. And friends? Social life? We try our best. We're often on pins and needles at every social outing. But, when we forgot to bring his device/book/toy (name it), to anyplace he would rather not be, and he starts to have full-on, out-of-body experience, causing everyone to with an eyebrow raise and "whew, not my kid" praise...you'll understand.

As tough as it is, I often remind myself how much better I actually have it than others. Still, it's important to remember to take care of yourself. Just today, I had two encounters: one with an old friend and one with a new acquaintance. Both explained how their children were getting in trouble at school for issues related to their diagnosis. Intimately familiar with the issue, I have planned to contact both and talk about options. In the meantime, I wanted to reach out and hug both of them.

There is no shortage of stories of parents who don't know what to do or where to turn, those who just throw in the towel or the worst, those who take drastic measures and do harm to their special needs children.

I can't stress enough how amazing parents of special needs kids are. If you are one, you should be wearing an "S" on your chest every day. We have stamina and patience and a deep compassion that reaches beyond what we thought signed on for. But, we also have those tough days..the ones where we feel the pressure is just too much. If you're feeling that pressure, there is help.

Here are a few:

Respite Services

Autism Speaks Directory of Respite Services 
RPAC Respite for Parents of Autistic Children Facebook Page
Easter Seals Directory of Respite Services

Helpful Websites

Kids Enabled 

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