Help me! I’m Drowning in Christmas!

What might a person with autism tell his or her parents, caregivers and teachers about the holiday season?

Dear adults,  

I know you are upset with me. I hear you talking to each other about me. You wonder why I seem so ‘off?’ Why do I melt down more often these days? Why am I being so inflexible and ‘non-compliant,’ you ask?

There is a lot going on in my world. I wish I could tell you so that you would understand – and help me.

My house is occupied with new decorations. The blinking lights and shiny things on the tree hurt my eyes. The presents under the tree are not to be opened. I must wait, you say. Your ‘background’ music screams in my ears. Different sights and sounds fill my world – decorations filling spaces and changing the way my house and classroom looks, feels and smells. Everything is loud and unpredictable.

You took me to the mall last night. People everywhere -rushing and pushing. Different music in every store, screechy voices and no time to look at the things I like! I was tired, overheated and overwhelmed. But, we had to ‘get one more thing done.’

Parades and parties make me excited, but, they make me anxious too. People visit our house; voices I have never heard, people hugging me and asking all kinds of questions. It freaks me out. Even the food looks different! Please don’t beg me to ‘take a bite.’ Can I please just have my chicken nuggets?

I am having trouble coping with the different things I see, the sounds I hear and the confusion of the season. All this ‘fun’ wears me out! Nothing is the same and everything is Cute boy, sitting on a window shield, playing on mobile phone atso much – too much for my senses to handle all at once.

Who is staying with me while you go out tonight? Will she know exactly how my evening should unfold? What if she doesn’t read me my story? Where will you be? Are you coming home?

Do I have to go visiting?

New pajamas?

What! My TV show is preempted by a Christmas movie?

I cannot take much more!

I get to bed later than normal. I have some trouble falling asleep. My mind races with all the changes and intensity of Christmas! Sometimes, I worry about things when I lay in bed.

In the morning, I feel really pooped. I know that I, “make you late because I am so slow.” I feel your frustration. More than you know. I want to stay home. I want to feel safe.

At school, everything is mixed up. My teacher is away again. My day is packed with assemblies, practices, bake sales and food drives. I never know what will happen next.

Why is the gymnasium not available?

 When will it be time for math?

Wait, why we are doing Christmas art instead of science?

Suddenly, my classroom fills with many kids I don’t know. They sing songs, act silly and laugh loudly. My ears hurt. I feel too warm and squished in by all the people.

My teacher says it’s time to go – there is a Christmas play to watch downtown. All the kids seem so excited, but, I just feel worried and drained. I want to enjoy the activities, but, there is so much happening all at once. I want my routine. Why does everything seem different? I think I am drowning in Christmas.

I am sorry if I am not acting ‘myself.’ Nothing feels normal. Please help me.

Could you add some down time to my day? Is there a quiet place for me to do something I enjoy? I need to settle down my body and my mind so I can stay calm and controlled.

It would really help if you could make me a visual schedule (words or pictures will do) of what is happening so I know what to expect. Please give me a visual warning when a change is going to happen. Telling me doesn’t help – your message gets lost in the storm of sounds in my ears.

I need a picture (or written words) of where I am going and what I will do. Show me what choices I can make since I must go with you. I need two or three options please; maybe I can choose where to sit or what to bring with me?

Please don’t forget to bring my, “I can do this bag’ with my items that make me feel safe: my music, headphones, ‘chewellry,’ squishy ball, Buzz Lightyear, some snacks and water.

Tell me how my favorite character, Buzz Lightyear copes when things are too much. Better yet, show me. Write me a story about how Buzz feels at this crazy time of year. Read it to me several times a day. Let me hold the story and look at it when I need it.

Most of all, please be patient, compassionate and gentle with me. I want to ‘be good.’ I am not trying to make you angry or frustrated. I need you to understand because others do not. You are my safe person. I need you to save me from drowning this Christmas.

With love and trust,

A child with autism

 

©2016JenniferKrumins

Autism Aspirations

Meltdown at the border and what it taught me

The message I was about to deliver boomeranged around and smacked me in the head.

Ivars and I were excited about our return to Ohio. Anticipation occupied my mind as I rehearsed my presentation and imagined the people who would attend my workshop early the next morning at a large autism conference.

“Your books aren’t allowed in our country.”

The words stung. My chest tightened. My muscles stiffened. My face constricted. My husband’s voice broke through my shock, telling me to stay calm. His words sounded a Stress Meter Showing  Panic Attack From Stress And Worrymillion miles away. I was far beyond the possibility of calm. Beyond the point of no return.

For almost a decade, we had travelled in the U.S. with my self -published books with no issues. The explanation at the border was always the same: “My wife is speaking at an Autism conference and she has a table to sell her books.”

This time the response was very different. Two hours of waiting for strangers to decide that I was allowed in the country, but, my books were not. My counter arguments fell on deaf ears: I would be speaking for free and I had paid $1000 for a vendor table. The money was given to an incredible organization in Ohio that serves individuals with autism. No amount of explaining would change the result. I was a self -published author and speaker with a vendor booth and no books.

Weeks of preparation and nervous energy hijacked my emotions – a full blown, ugly cry ensued. Filled with panic my brain shut down and I begged my husband to take me home. I was done.

Thankfully, Ivars’ thinking brain was still ‘online.’ In spite of his own frustration and anger he managed to stay calm. My husband tried to reason with me: I would be letting people down. I had a presentation first thing in the morning and a video interview the next day. He played on my sense of responsibility. At that moment I was unmoved. Rational and reasonable thoughts were not possible.

Ivars problem solved while I stayed frozen in my dysregulation. He figured out where to store the books. Next, he calmly stated that we were going back into the States and I was going to do what I had promised to do. I stayed stuck but trusted his decision.

Within a few hours, I was grateful he had.

The next 5 hours of driving afforded me plenty of time to ruminate over the disappointment. But, as my blood pressure decreased and my thinking brain came back ‘online’ I was capable of considering alternatives and seeing possibilities. I was still angry and feeling somewhat ‘lost.’ However, little by little, I began to consider what I could take from the events in order to grow in compassion and empathy. The answer was obvious to me.

Many times as a mother and teacher of children with autism I had witnessed full blown meltdowns. This time I was not the observer. I had lived it. I was reminded of what an incredibly unpleasant experience it is to have your mind and your body lose control quite involuntarily.

I could preach about how we need to handle children with autism with empathy. But this experience authenticated my message. What could I take from it that would serve me in my service to educators, parents and children?

First, in the midst of the emotional hijacking, do not expect the person to think. Not possible. Avoid talking or asking questions as it just pours gas on an already raging fire.

Second, be the thinker in the moment. My husband was my brain. He did not ask me questions. Instead, he calmly guided me to where I needed to be, gently but firmly insisted on actions I was to take: “Get in the car. Hold the pillow. Breathe.” I could do those things.

Third, be the calm that is so badly needed in the storm. Ivars did not insist on my looking at the border guard, nor even speaking to him. He simply expected me to hear his calm voice and his voice only. He held me when I wanted to be held and let me go when I needed to be let go. Above all, my husband stayed calm, kind and firm. He held his own emotional ‘shit’ together.

It took me a day to recover physically and emotionally. I had what I needed to move beyond the upsetting event: a warm and trusting relationship, the knowledge and ability to use self-regulating techniques (deep breathing, positive self -talk, verbal reasoning and so on). I was able to stay cognitively flexible (once the panic attack ended) in order to choose how to handle a vendor booth with only a few books. Self- awareness helped me to understand why I was having difficulty functioning and a sense of self- esteem reminded me that I would be okay. I was still a loveable and competent.

Innate skills, learned skills and external support come together to RE- regulate an adult who experiences disappointment and shock. How very hard it must be for an individual with autism who, by the nature of their disability, lacks many of these internal skills.

How do we act in response to sudden moments of dysregulation in our students and children with autism? Are we the epitome of external support? Have we taught and practiced the self -regulation and cognitive skills before they are needed in a tough situation? 

Food for thought…

Jenn  😀 

 

Copyright©2016JenniferKrumins

A New School Year: What are you Thinking!

It’s that time of year!  The words “Back to School” ring loud in the ears of parents, students and educators. Schools, families, businesses and communities are hearing the rally cry and readying themselves for the inauguration of a new school year!!

Some are celebrating the new start and others are bracing for a new year and the anxiety about the unknown. As we busy ourselves with back to school shopping and a return to more routine in our daily lives, I think it is equally important to prepare emotionally and mentally as adults who love and/or work with students with autism. It is well documented that our mental attitude and our thoughts play a huge role in shaping our reality.

Time for a Check on your Thinking…

Is your mind harboring resentment about what resources you don’t have ?

Are you ‘stewing in your own juice’ about the lack of support your child with autism will have or the demands of his or her needs?

Are you PRE worrying about how you will meet the child’s needs or cope with the behavioural challenges that often come with autism?

As Dr. Phil would say, “How’s that working for you?”

I am not denying that the situation is probably less than ideal, maybe, it even stinks…but let’s face it, much of your stress is OUT OF YOUR CONTROL.

So here’s some advice (that I am constantly reminding myself to take)time-for-reflection-message-means-ponder-or-reflect_fJe9KmD_

1. Take inventory of what you CAN CHANGE.

  • Your autism knowledge
  • Your knowledge about the educational system (Who holds the purse strings,  what is the chain of command, policies and procedures in making changes)
  • Your classroom set up or organization of home and schedules
  • Your end of the relationship with the parent or teacher
  • Your words, tone, actions in advocating for resources (what you say and how you say it matter)
  • Your words about the teacher, school, parent, and so on…words are powerful!

2. Now let’s look at what is NOT IN YOUR CONTROL:

  • School board policies
  • Budgets
  • Teacher/Parent personality, outlook, mindset
  • Time
  • Human resources
  • Waiting lists

So now what? 

3. Do what you can, where you can and CHOOSE to be positive.

Catch yourself moaning, groaning, bitching and complaining. NO ONE wants to hear it. We all carry heavy burdens or troubles. Even when we politely smile and/or agree about a problem, check yourself…do you feel UPLIFTED and INSPIRED by someone who dumps on you?

Smile. Laugh. Look for the opportunity to grow, learn and make someone’s day brighter….even your own!

Talk to others. Let’s be clear, however, in no way should you be dumping all of your angst and misery on others. Seek those who may be able to help you to view a challenge from a different perspective, offer varying insights or solutions that may not have occurred to you.

The school year is fresh and it is time to leave past failures and frustrations behind. Dragging them into this new school year is pointless and counterproductive.

I am not asking anyone to be ignorant of reality or “pie in the sky” thinkers. However, I am a firm believer in the power of expecting good things and positive relationships. We will find what we seek.

The days that lie before you and I are a gift. The people and events that will come into our lives this school year will offer opportunities to grow, expand and build our character – who we are and how we show up in this world. You and I may not be able to control much of what life hands us, but, we are always in control of what we choose to think and how we choose to respond.

Here’s to a rich and rewarding school year!  🙂 

Jenn

Students with Autism: Have you Shared Your Vision?

What pictures do you hold in your mind of your child’s day at school? What activities would be challenging? Which activities would bring her the most joy? How do you see him reacting to frustration? Is your child dancing when music is being played or sitting with headphones watching a learning video? Is your child running around enjoying the freedom of recess or walking the perimeter of the school yard? Is he sitting on the floor with the other children during circle time or on a chair on the edges of the circle? Is she contributing to group work or working independently at her desk?

As humans, we have incredible imaginations and we are constantly creating assumptions in our mind about what we think someone is doing and what they know or don’t know. We may not even realize that we have these ‘pictures’ in our mind until they clash with reality. The jolt of that comes from realizing things are not as we hoped, arouses strong emotions (momma bear and poppa bear seethe) and the result can often be that we lash out with a nasty note or phone call demanding answers.

But, before you react, consider this…

Have you expressed clearly and concisely the ideas, expectations or pictures in your mind of what you would like to see your child doing? Have you discussed these with your child’s teacher?

Our thoughts and visions are private unless we share them. A teacher cannot know what Don't Make Assumptionswe expect or hope for our child unless we share our thoughts with them. The opposite is true as well, teachers owe it to parents and students to make their expectations very clear. This is particularly true of our students with autism since parents tend to have a good sense of what activities and tasks their child would be thrilled about joining in – and those that may cause their child to hide, withdraw or meltdown.

Relationships are tricky – I know that. But, I also know all too well that assumptions are almost always the mother of all screw ups when it comes to relationships! If teachers and parents were to communicate clearly and concisely about what they envision for the child, what they know about the child and then work cooperatively to find a way to make the vision a reality to the extent possible, what an amazing experience a student would have!

Share your vision today… and begin the collaboration. Our kids deserve it!

🙂 Jenn

 

Copyright©2015JenniferKrumins

The TRUTH about Individual Education Plans

It’s only fair that I be honest right from the start. I don’t enjoy creating individual education plans. I have a hard time deciding what goals to choose, especially when a student’s needs are high. I want to do it all and be all I can, for the student who needs me most.  I hate how scripted and hemmed in I feel by IEPs – always striving to be clear and concise while incorporating the correct terminology and prescribed components. Frustration grips me at times when I am trying to transform ideas into meaningful SMART goals. Instinct about what I really want for a student clashes with the question of how I can put that knowledge into a well written goal and subsequent objectives. I especially hate trying to decide how I will measure the goal! I find writing individual education plans tiring and mind bending at times.

You might think that having researched IEPs for years, written books and consulted in the development of them, I would hold some perverse pleasure in the documents. No, quite the opposite; the more I learn, the more I confound my own ability to create a simple and authentic product. Lurking in the shadows of my awareness is the suspicion that no one will really even look at the IEP when it is complete. Does anyone actually pore over it and integrate its ideas into daily practice? I cringe considering the answer. Despite my feelings, I must concede that the core of my beliefs as an educator center on individualizing education based on the unique qualities of each student.

In the essence of who I am there lies an unchanging, profound desire to make someone feel good about themselves. Twenty some years of teaching has not changed this deep drive within me. Even the crappiest of days can be transformed by one small moment when a student looks into my eyes and I witness the unmistakable glow that proclaims, “I get it!” This declaration reflects the deeper and unspoken thrill of the words, “I am smart!”

So what does this love for growth have to do with an individual education plan? Everything.  An IEP will only be as valuable to the degree that it reflects a genuine desire to help a child be his/her best self. Let’s be clear, and maybe a little harsh: if you are going to view the IEP as a formal hoop completed with as little time, energy and enthusiasm as possible, in order to appease some external force, then I suggest the final product will indeed be quite uninspiring. It will be done. You will have fulfilled your duty. But, you will have missed an opportunity to transcend the drudgery.

An individual education plan gives us an occasion to use the gifts that brought us to a career in education: creating a vision for another person’s life, thinking through the steps of getting there, and finally, crafting activities and strategies to facilitate growth towards the vision. Without meaning to diminish our role as teachers, many students will have theroadmap intellect and skills to achieve their goals with minimal direct intervention from us. But, as you are well aware, there are students who need our skills, our creativity and our compassion more than others in order to grow towards their potential.

IEPs can make a difference when they are viewed with a growth mindset: the core belief that intelligence and abilities can be developed (Dweck, 2007). Personal growth in ourselves and in our students is not only possible, but, expected. When we allow ourselves to dream with and for the child, we create far more than a legal document, but a roadmap of the best travel plans we can conceive. And we begin the journey one small step at a time.

I wish you a rich journey; a journey of growth and development for both you and your student!  🙂

Jenn

An exceprt from Been There. Done That. Finally Getting it Right. A Guide to Education Planning for Students with Autism.

Copyright@2015JenniferKrumins

I Love you Anyway, Dad

Dad,

I am not the child you thought I would be.

You love me anyway.

I cannot do the things you hoped I could do.

You cheer for me anyway.

I have interests that are very different from yours.

You participate with me anyway.

I don’t respond to you the way you would expect.

You engage with me anyway.

I sometimes behave in ways you don’t understand. 39506212_s

You keep learning anyway.

My future may not be what you planned.

You encourage me to grow to be the best me anyway.

 

Sometimes, you get impatient and frustrated with me,

I love you anyway.

Sometimes you feel scared and your heart hurts,

I see your bravery, love and courage anyway.

Thank you for loving me the way I am Dad.

Thank you for letting me love you, the way I can.

Love,

Your Child with Autism

 

Copyright©2015JenniferKrumins

We Can’t Teach What we Don’t Own

The post entitled Cultivating Self Regulation left me feeling like I had more to say. Now, those who know me, might be thinking that I always have more to say. True. But, this time, I was unsettled.

It was in the midst of one of those embarrassing, “less than my best – self moments,” that I stressedfigured out what needed to be said. Once again, I must sheepishly admit that in dealing with my hormonal,’ preteen daughter I may have “lost my $#@$” one evening. Our day had been a series of small collisions of minds. In my mind, she was being selfish and ultra sensitive and in her mind I was being just plain, MEAN. The storm clouds had been brewing all day and by the time bedtime was within reach her frustration and anger bubbled up from some dark place within and she unleashed the beast of preteen fury!

I wish I could report to my readers that I responded to her outburst with the love and patience of a gentle mother. No. That mother had left our home hours before. The one that was remained sensed a sudden surge of anger, exhaustion and irritation rising to a boiling point.  With blood racing from my brain to my extremities I roared into my daughter’s room. Every ounce of emotional control was silenced as I allowed myself to “lose it.”

Thankfully, in a split second of sanity, I heard myself. I was a raving lunatic. And then, it dawned on me. How can I teach self-regulation skills and emotional control to my child if I am out of control?

It’s not that this was some new concept that suddenly came to me. I know that I have to model what I teach and preach.  We can know something on an intellectual level, but, we need to live what we know in our own actions, if we want to authentically teach our children and our students.

Once again, it is through my child, that I learn the power of embracing my own vulnerability; my own humanness is a great place to begin leading my child. And so, in the very moment that I heard the high pitch of my “other self,”  I knew I had to own it. I stopped, looked my kid in the eye and said out loud, “Wow, I am acting like an ass.” She allowed herself to crack a smile at my foul mouth. I went on to explain that I could hear my own voice and feel my heart race. I didn’t defend myself. I explained that I was feeling exasperated (which is okay) but, I allowed my emotions to take over my brain. She knew how I felt. She asked me what I could have done to stop it. She really wanted to know. And that is when the mother I love to be came back on the scene.

I explained that once I recognized the physical symptoms of anger brewing, I would have been better off to stay in my room. I needed to keep the lion in the cage. I needed to use that time to breath deeply so that oxygen could send blood to my brain to keep my brain thinking positively and productively. Once my thinker shut down, my emotions had a field day! A productive thinking brain  sends soothing thoughts and it does not allow ‘stewing in one’s own juice’ of negativity. My thinking brain needed to take control of my emotional brain. She snuggled in and told me that her thinking brain had been silenced too. My daughter needed me to be calm so I could help her to regain her ‘thinker.’

The point of my story – in case I get carried away in my story – is that  as parents and educators we need to honestly take our own emotional ‘temperature’ if we want to teach our children how to regulate theirs! Being owning our own emotions and openly sharing how we cope (or want to cope) with our feelings is necessary. We can’t demand controlled behaviour when we are unable to control our own actions! Letting kids hear us talk ourselves through our potential meltdowns will go a long way to making the lesson authentic and life long.

Recognizing our own emotions and owning our responses to those emotions is difficult. It’s not easy to admit when we mess up. But, it’s the only way create an environment where your child is safe to make mistakes and learn from them.

Wishing you a rich journey growing with your children and students,

😀 Jenn

Cultivating the Seeds of Self Regulation

Kids with autism cannot be expected to self regulate emotions until we teach the skills needed to do so. But don’t get too excited. Our work is not over once the “content has been covered.” I suppose that it true for all teaching. Deep learning needs far more than coverage of skills. To learn a skill well enough to be able to use it under stress and in different situations, we have to have a whole lot of guided practice, support and then a gradual release of the skill into our own hands without the direct support of another human being.

The process seems to be a lot like garden work. It’s not enough to dig a hole, throw a seed in and then rest with a cold beverage while the seed ‘does its thing.’ I am no expert gardener, but, I am quite sure that we need to provide that seed with sunshine, water and we have to keep those nutrient sucking weeds away from our little seed. We may even need to throw in some fertilizer to give it an extra edge in the growth department.

Our students and children with autism are desperately in need of some gardening in terms of teaching the of those pesky emotions, high anxiety and sensory challenges that can sneak up on them and attack like a swarm of beetles!

The Seeds:

  • Teach how to recognize early symptoms of social stress and anxiety (repetitive movement, perseverative talking, swearing, oppositional behavior, inattention or escape behavior)
  • Teach and practice daily specific stress reduction techniques (deep breathing, visual imagery, exercise, yoga and so on)
  • Teach students how to identify and name emotions and the varying ‘levels’ or degrees of an emotion
  • Teach physiological signals that our bodies give us when anxiety levels begin to rise
  • Teach how to monitor different emotional states and successful responses to those statesDaily Care
  • Practice strategies daily – throughout the day at every learning opportunity possible
  • demonstrate your own use of the calming strategies and name your own emotional states
  • affirm progress
  • acknowledge attempts
  • gradually release control and watch the seed grow!Awesome Tools ….ONLY if nurtured daily

    81TOCHU4aqLspark313864751rWomd0JmL._SX258_BO1,204,203,200_

 

 

Just remember, a book or program is only as good as the teacher’s consistent practice, encouragement and authentic engagement with the student. YOU make the difference.

Happy Gardening!  😛

Jenn

 

Copyright©2015JenniferKrumins

Warning: Embarrassing Self -disclosure Ahead

Last week I promised that we adults cannot take it personally when a child with autism experiences a meltdown. I explained that meltdowns signal that the child needs help and skills need to be taught. Before taking a closer look at what those skills might be I thought it would be frame the meltdown in a way that many of us can relate…hopefully, I am not alone on this one!

Warning: Embarrassing self -disclosure ahead.

There are times when I just lose it. Any semblance of self- control eludes me and I fold like a cheap suit. The sight of me relapsing to the state of a crying child who just simply cannot cope, is not pretty. For the most part, I hold myself together in front of the public and colleagues, but, my dear friends and family get to witness the ugliest moments. Once in a while, life delivers a perfect storm of personal and/or professional situations mixed with hormones, lack of sleep or a deepening sense of overwhelm and BAM – I am a puddle! Not a pretty sight, I will admit. However, over the course of 50 years I have learned a few things that have helped me to lessen the frequency and even the intensity of those less than my best moments.

For example, I know enough to recognize the building of storm clouds. I have learned to tune into my body’s physiological responses to stress and I am able to use my thoughts to ‘combat’ those negatives voices that egg me on and push me to the brink. It has taken years, but I am more willing to listen to my body’s need for nutrition, sleep, exercise and relaxation so that storms can be averted.  I have even learned enough to act on those needs more regularly!

I also have some tricks to use when having a nap or running to the gym or not viable options. When I feel my frustration barometer rising I can reassure myself that the feelings are temporary and I will be able to cope. I also decide what treat I will gift myself for staying cool and calm. I know instinctively to take deep belly breaths and keep oxygen moving to my thinking brain (the prefrontal cortex). I also know when to walk away from a situation.

I share this shameful truth about myself because I think that it is critical to put ourselves in a child’s place when he or she is losing emotional control. It helps us respond with empathy when we choose to consider how we would feel under a stressful circumstance. I am quite sure that if we were scolded, yelled at, dragged, smacked, or humiliated in front of others during a time of emotional overwhelm we would be less than motivated to ‘relax’ or ‘snap out of it!’

To be totally honest, when I am distraught, I cringe at the sound of talking. Even hearing the words “Just relax, take a deep breathe,” are beyond irritating. I do not want anyone nattering in my ear or raising their voice with me when I feel as if my world is exploding. What I do need, is to cry and release the pent up emotions. Then when the worst of the storm has passed – and only then – I will be willing to reflect and discuss a plan of action.

Shame and anger have no place in our dealings with children with autism. Neither shame The-only-thing-worsenor anger does anything to reduce emotional overload in a child. In fact, the only thing worse than a child who is losing it, is a child and an adult who are out of control!

So, what skills do we use to regulate our emotions? How can we help our kids with autism to regulate their emotions?

Stay tuned….

 

 

Copyright©JenniferKrumins2015