Mario Emotional Stage Index Cards

Using Emotional Stage Index Cards for Sensory Processing Issues

Mario Emotional Stage Index CardsWhen speaking about Emotion Cards, there are two different types of uses and benefits: helping the child identify others’ unspoken emotional cues and helping identify the child’s own stages before a potential meltdown.

Both are extremely helpful in introducing emotional identification, understanding, and regulation. During tonight’s Web TV show, Austin and I talked about  Emotional Stages index cards that my son and I created. During his first grade year I believe they were responsible for a real quantum shift toward our goal of helping him identify and self-correct some of his pre-meltdown behaviors.

The challenge

What we were finding in school was that during certain transitions throughout the day he would start exhibiting behaviors that indicated his difficulty adjusting in some capacity. Handled incorrectly or ignored, these behaviors would quickly spiral toward loss of control.

My idea was that I wanted him to start to recognize when his body or senses started feeling a little squirrelly so that he could either self-correct if able, or ask for help appropriately (e.g., a sensory break or a walk around the school with the special ed professional).  By teaching him to identify the signs and stages of losing control, he could hopefully have access to the support he needed and decrease the number of incidents where his behavior did reach that point of no return.

The cards

Justin and I took five index cards and numbered them one through five. He then drew a Mario face on each one, with number one being calm and happy. These faces progressed with two and three – feeling a little uncomfortable and weird – and on to four and five, which represented needing help and finally a complete meltdown.

We then laminated them, punched holes in the upper left corners and put them on a key ring for him to carry with him. Each morning I walked into class with him, did some sensory exercises, and asked him to identify how he felt with one of the number cards. In most cases, the amount of exercises done would directly correspond to his number, and our goal was to have him at a one or two before I would leave the classroom for the day.

The result

This number system quickly became a simple means to have him check in with himself throughout the day. For numbers three and four he had a set list of appropriate suggestions to help him get back to a one or two. Even when we experienced days where a five was reached, the stage was at least identified quickly, allowing the teachers to activate an “emergency plan” we wrote into his IEP.

I honestly feel that having Justin create these cards with me and begin to use them really helped him get to know himself in a systematic and linear way that he could clearly understand. They helped him with his feelings, they helped take the guesswork out of the picture for the teachers, and they helped our family both at home and any public outings.

What have you used in your house that helps identify emotions and stages of behaviors? I’d love for you to share!

spirit of autism sensory

It’s All About the Sensory

spirit of autism sensoryOkay, not ALL… but sensory issues play a bigger role in the daily lives of children with Autism than you might think.

I have always tried to explain this to the adults, teachers, caretakers, and yes, even physicians in my son’s life, who insisted that my child needed to be medicated for hyperactive and impulsive behavior.

There were certainly quirky and challenging things about him, even from birth. But I also had a girl first; so many of his odd behaviors were instantly dismissed as “boy stuff.” The real trouble started when he went to Pre-K and had to transition to different activities, sit quietly in circle time, and interact with a group of peers.

I remember waiting months to see a highly-acclaimed pediatric neurologist before my son was officially diagnosed with Autism. He was four at the time. For our long-awaited appointment, we were in the waiting room for an hour and in the doctor’s office waiting for another hour. What four-year-old would NOT be climbing up the walls at that point?

The doctor came in and promptly spent 10 minutes with us.

“Write your name.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

“Ma’am, your son has ADHD, fine motor dyspraxia, ODD (Oppositional Defiant Disorder), and maybe some sensory stuff going on. Here’s your prescription for Adderall. See you in six months.”

Whoa… wha? Oppositional DEFIANT Disorder? He’s FOUR! When my daughter was four I practically wanted to SELL her! (Kidding. Mostly.) Of COURSE he was hyper! We just waited TWO hours to see him! And what’s with the meds? No explanation of any of these “disorders”? No constructive suggestions? No support or help?

Nope.

I researched all of the labels that supposedly defined my baby boy. Yes, he was hyperactive, but the first one that really grabbed my attention was sensory processing disorder. I went through a checklist and instantly started understanding my son and the world he lives in. Many of those “quirks” were a direct stress-response to how he interprets all the sensory input from his day-to-day environment.

We had an entire sensory evaluation done with a different specialist, and eventually arrived at the Autism diagnosis.

Once I started to differentiate between “My body hurts, I’m exploding inside and need help” and “I’m being a boy and testing my boundaries” my whole world changed, and so did my son’s.

The school system did not follow suit, unfortunately. During our IEP (Individualized Education Program) meetings I provided all of his sensory triggers in a document, what calming methods worked for us, and physical toys and music that he could keep in his private break area at school. The Special Education Director for the district continued to try and strongly suggest he be medicated.

I was actually told in one of these meetings that I was the type of mother that would deny my child insulin if he had Diabetes just because I wouldn’t put him on Adderall or Ritalin. Unbelievable!

I calmly repeated, “We need to start here, with these sensory issues. It is tangible – you can SEE he is struggling in direct response to these triggers. Why not start with what we know and work out from there? Let’s see what behaviors are left after we address some of these root causes and we can re-evaluate from there.”

Although I finally began homeschooling my son after years of battling with the school, this information is still critical. Almost every outburst, meltdown, or seemingly “defiant” behavior can be traced down to a sensory problem my son is experiencing at the moment.

Recently I ran across Asperger Experts – two young men with Asperger’s Syndrome that have navigated their way through the roughest times of childhood and adolescence and are now helping parents and educators do the same.

They have a program called “Fundamentals For Thriving Bundle.” It’s been extremely helpful for me to continue to understand, teach and support my son in a way that he is most receptive.

They published a video called, “The Sensory Funnel.” It’s a MUST-SEE if you want to learn more about your child’s or student’s sensory issues, how they affect day-to-day living, and what you can do to help him or her succeed.

Watch the video below and let me know your thoughts! I’d love to hear if it clicked for you like it did for me, and any other comments, successes or struggles you’re going through right now!

IEP Meeting

Getting What You Need and Want from Your IEP Meeting: Before, During and After

This week’s post is from special guest Erica DuPont, LCSW

Before: Positive self-talk!  If you tell yourself that everyone is against you in the meeting, then you will present with a negative attitude during the meeting.  Most teachers want the best for kids and are willing to support your requests and somewhat mentor you through the educational system. Having teacher support can go a long way.  If you are able to understand what resources the teacher needs in order to really help your child, then you can enlist an advocate to ask for those resources.  This way, the teacher is not put on the spot, or thrown under the bus, and the “neutral” person is asking for the additional support.  Keep the teacher on your team – let your advocate be the one that brings up the uncomfortable questions or suggestions.

Preparation is the key to success no matter what professional field, sport, or activity you engage in. The same holds true for IEP meetings. If you want to have a great IEP meeting then you must prepare ahead of time. When I accompany parents to IEP meetings as a professional advocate, I prepare ahead of time and don’t just show up to the meeting and try to wing it. Read over the list of academic standards for your child’s grade.  This will give you a starting point to know what goals and objectives would be appropriate to ask for on your IEP.  There is so much conversation and dialogue during these IEP meetings and it can be very emotionally draining.  Do not attend an IEP meeting alone. Even if you dress up your neighbor and they do not say a word, their presence is a support.  It is helpful to have someone taking notes for you and to bounce things off of after the meeting.

During: Stay calm.  It can be overwhelming to sit at a table full of adults…but do not forget…you are an adult too!  Actually, you are the most important adult at that table.  It is your child that all these people are meeting about.  It is within your right as a parent to excuse anyone from the meeting that you do not feel has an educationally relevant reason to be there.  You have much more control and power in these meetings than you may think.  If there is something you do not understand, please stop them and ask them to explain in detail.  It is helpful to have your list of possible goals and objectives with you so you can refer to them as your IEP is being written.  However, before the goals and objectives section of an IEP, there is a “Present Level of Performance” section that is reviewed by the team.  This is a summary of how your child is CURRENTLY doing in academics and other related areas.  Be sure to list all your concerns in this present level of performance – goals and objectives cannot be written if the information is not supported in the “Present Level of Performance” section.  You can always ask to go back and add to this section during the meeting.

These are common questions that you may be asked about your child during the IEP meeting. Consider these in advance so you are prepared:

1. What are your child’s strengths?

2. What motivates your child to learn?

3. What are your child’s areas of weakness?

4. Have you found any techniques or strategies helpful in addressing your child’s weaker areas?

5. Do you have a goal or anything in particular that you would like your child to learn this year?

In addition, you also have the right to ask questions.  Here are some examples of questions you might want to ask the team:

1. What specific learning strategies are written on the IEP?

2. Will peer tutoring by used with my child?

3.  Is the IEP academic plan based on learning functional skills? (reading a recipe, ordering from a menu, counting out money, telling time, etc.)

4.  At what age do you being involving my child in goal setting and self-advocacy

5. Do you feel my child qualifies for an FBA (Functional Behavior Assessment)?

After: What’s done is done, right?  No! You can request an IEP meeting at any time, as many times as you would like during the school year.  If you go home and read over your notes, discuss the meeting with your friend or partner and you feel something was missed, do not hesitate to call anther meeting.  The IEP is a working document which means it can always be added to or changed.

Make sure you get copies of everything.  Ask for a copy of the IEP, any pages you were asked to sign and the conference summary.  Please read over the conference summary carefully.  This summary addresses what topics were discussed during the entire meeting.  If you feel something is missing from the summary or do not agree with something on the summary, you can ask that it be changed or added or deleted BEFORE you sign it.  I know you are tired once the meeting comes to an end, but don’t give up yet until you feel comfortable with those conference summary notes!

Give yourself a pat on the back, these meetings can be stressful but you can feel more prepared and less overwhelmed with the proper support.  For more great IEP information for any state, including thousands of goals and objectives and tons of resources, check out our website at www.seemyiep.com.

Best of luck to you and your family.

You Hate My Autism!

Some of you may have seen my recent “controversial” question I posted about a startling conversation I had with my son. I asked anyone who felt comfortable to share with me your thoughts and experiences surrounding the topic and I received an overwhelming response! Thank you to every single person who chose to chime in via Twitter, Facebook, or email. I am grateful for your unique perspectives and I’d like to share some of them here.

Here’s the original short post again:

I recently had an extensive evaluation done for my son with a cutting edge, holistic achievement center. The program offered is intense and lengthy but convinced me that my son would be able to reverse most of his balance/coordination/motor skills issues, digestive issues, academic imbalances and sensory challenges.

I asked my son later if this program sounded fun and exciting to him, and if he would like to start. He immediately blurted out, “You hate my Autism. You want my Autism to go away.”

Wow. Not what I expected from my 10 year-old. But I hear him loud and clear.

I am not trying to change who he is at all. I want only the best for him, and felt it my parental duty to merely CONSIDER whether or not a program that can help him open up to his abilities without much of the struggle would be in his best interest. If it worked, of course.

What do you think? I’m not looking for anyone to tell me what I should do, what I want to hear from you is how you feel about your OWN situation.

Would relieving some of the struggles = changing who your child is or who you are in your opinion? Does it mean you don’t accept them, or are you empowering them with new tools?

Is trying to help your Autistic child DENYING who he/she is?

With all of your permission, I’ve chosen some of the key points of some of your responses that I wanted to share.

Robert said:

“I think it’s a tough balance. When people ask me if I want to be ‘cured,’ I have to admit I have a hard time not taking offense. To me, it’s like asking me if I want to be cured of my skin color, Autism being so definitive a part of my identity as a whole person.

Still, are there things with which I know I need help? Of course, but I don’t want that help to come at a cost of who I am. I also don’t want those interventions to define so much of the time in my life that I feel I’m not allowed to be myself.”

You can find more about Robert at simplyrobert.wordpress.com where he occasionally blogs about Autism, but more often about his Autistic interests. (I think it’s a great resource! Love the post on productivity!)

Another Autistic adult reminded me that an important aspect to consider is where the Autistic person might be coming from.  My eyes were opened to some really great points that I absolutely had to share with you:

“We live in a world that is not only ‘not made for people like us,’ but openly hostile to our differences. We are told, ‘Stop rocking!  Stop flapping!  Stop talking to yourself!’ without any consideration of what purpose these activities serve.

When we are bullied or mistreated, WE are the ones sent to ‘social skills training’ so we can ‘learn how to fit in’, as if it’s our fault for being so different. But I want to illustrate the general environment we face, and my point is that it can cause us to see ANY attempt to help as yet another way of squelching the person inside.

There are also people who feel that their Autistic traits are very much part of who they are, and taking them away would also be taking away a piece of themselves, even if that ‘piece’ causes a lot of apparent heartache.”

This reader does various therapies for her children but is careful not to frame them as “helping with Autism,” rather something they do to help them succeed in life (much like going to school or learning their ABCs).

Brilliantly put.

One of my favorite social media friends and fellow bloggers shared:

“Where does my Autism end and where do I begin? This nasty little quandary works just as well when reversed as well. I say your son is brilliant because he’s too young to be so self-aware. I’m both impressed and saddened that he’s already dealing with this one.  He needs more time to mature before tackling such heady stuff.

I confess. I’ve struggled with this one myself. If offered a cure for my own issues, I don’t think I’d take it. I’m not sure how much of me would go with the ‘bad stuff’.  I like some of the stuff that I KNOW a cure would take away.

He has to come to terms with the fact that Autism doesn’t define him.”

That is a fine line that I think must be explored at a pace that is comfortable for each individual.

My close friend in the Fire Rescue Reserve that assists me when I teach my Autism CERT module sent me a heartfelt testimonial after seeing my post:

“For me, through my early teen years after I was diagnosed, I constantly tried to dismiss the fact I had Autism, I felt ashamed, scared, and angry with the fact. At that time in the world little was known to the general public and many doctors about Autism. This in turn made it harder for me to accept. My parents tried many things and none really worked in the end. I had been diagnosed so many times and been to so many doctors I was starting to shut the world out and just didn’t want to accept the fact that I had Autism.

Later on in my late teens and early twenties I found that support group that I had been missing. This group consisted of both friends my age and their families near me. Through the experiences we shared I grew little by little and eventually learned how to deal with my Autism in my own way. These experiences have molded me into who I am today. Today I am finishing my criminal Justice degree. I also am a volunteer with a large metro area fire department which has provided a further opportunity to expand my support group. Through volunteering here I now assist with teaching of the community emergency response team class. This in turn has helped me practice being around people and learning social cues and understanding my Autism. In a big way volunteering has helped reduce the pangs that come with having Autism.”

I always hear great gems of wisdom when I invite his perspective into my teachings.

A wonderful parent told me:

“When my son was diagnosed with PDD, initially, as his Mom and as a clinical social worker, I wanted to get him all the help and services I possibly could! I had heard how early intervention was SO important and he was only diagnosed at age 6. So, I made sure we got an IEP, got him into a friendship group at school and a social skills group privately. I also got him OT to help with the sensory integration issues. I have to admit, although this was helpful in the beginning, this packed our schedule and we all felt extremely overbooked and stressed!

…my perspective began to change. I started placing him in supportive activities that he enjoys and feels help him. We continued the social skills group, but let the OT go (after a year of treatment), and instead, he joined a non-competitive swim team. The swim team allows my son to feel included in a sport, he may never win a race, but that doesn’t matter, to me what matters is that he feels like one of the other boys, included! I have since looked for other ways he can “fit in” with other kids, instead of looking for services specific to his diagnosis.

…we have accepted that our son will be different, it’s who he is and I really don’t want to change that, but, like you I want the best for him and don’t want to see him struggle too much. The older he gets, he’ll be nine this summer, the more I have been letting go and allowing him to learn more for himself about what is helpful to him. I have begun trusting in his ability to know what is best for him, as I don’t have the same issues he has.”

What a great reminder. At 10, I forget that he is aware of what serves him. Not to mention that the children coming forth today really are so much more connected to their inner “GPS” of what they want and need than we ever were!

Another social media friend I admire wrote:

“Tough question. Complex answer. I understand your desire to ‘normalize’ your son as much as is possible. There are things you describe that have real effect on us and our ability to live happy and fulfilling lives. This much cannot be denied.

On the other hand, we are what we are. While my Autism has handed me some wonderful abilities, it has also granted me vast lacuna in other abilities.

Still. . . Autism is not something added to a normal person. Autism is not something removed from a normal person. Autism is a large set of differences between one group of persons and everyone else.

Autism is identity which runs deeper than a name. Autism is what I am, it is the base upon which I build me.

…here is the key: the real indicator here, the only valid indicator, is your son’s voicing of his opinion.

Thank you for that reinforced point. He would not have expressed an opinion if he didn’t feel it strongly!

Another mom shared:

“A parent’s job is to help our children flourish, to become the best that they can be! I totally get that. I too try my best to help my son in anyway I can, without extremes…

As far as helping him with his balance/coordination/motor skills, in the long run, that is definitely going to benefit him. He will be able to take part in more ways when it comes to playing, maybe get picked to play with other kids, so I can see where that would help him.

If it were my son, I would let him have a say in the decision. Ask him why he does or doesn’t want to participate, get his point of view, and take it into consideration. Since it is about him, and it is his Autism.”

WOW! What amazing responses!

All this being said, we chose not to participate in that program. I also chose to check my perspective and make sure that I am in complete acceptance and appreciation for who both my children are when I engage with them. At all times. It has made a difference.

Am I giving up on finding additional tools and resources for him? No. After all I am always looking for tools, supports and resources for my daughter AND myself! It’s a journey. As Abraham-Hicks says, “You never get there. You’re never done.” What I DID give up was the urgency that something must be done to “help.” The inner panic that somehow I am not doing all I can for him.

As soon as I made this shift, this wonderful organization showed up in my inbox. That’s a pretty big wink from The Universe, eh?

Product Review Part II: Step Ahead of Autism

Click Image to Order from Amazon

After reading Step Ahead of Autism by Anne Moore Burnett, I felt that the stories and tools provided were so thorough and practical that I had to break up my review into two segments.

This is Part II of my review.

Steps Six through Eight

In each step Anne shares a part of her story and then turns her experience into practical tips and exercises for us to practice immediately.

Step six is ADVOCATE. Here is where we journey with Anne into her first IEP meeting experience, which wasn’t smooth by any means. She openly and courageously shared how she was caught off guard, how she took her power back, and how she successfully created the right support system for her son.

This chapter also offers a complete IEP Checklist, so we can learn from her experiences and show up to our own IEP meetings armed with the right resources and tools. Bravo!

Step seven is ASSESS YOUR ATTITUDE. Don’t let this short chapter fool you – it’s just as packed with nuggets of wisdom as the more lengthy ones. The biggest takeaway here is best said in the “Exercises” section:

A positive attitude enables you to look at what appears to be an impossible situation and find alternative ways to make it work.

She also explains how neurotypical children fuss when their basic needs (like structure and routine) aren’t met, but children with Autism actually suffer pain and discomfort. This is yet another simple key into the lives and minds of our little angels. She also reminds us to steer clear of pessimists and negative thinkers (a great outlook for all of us, not just special needs parents!). As the Law of Attraction guru Andy Dooley recently shared in his Atlanta workshop, “Don’t let people coerce you onto the Bi**h Train, do what it takes to stay on the Bliss Train!”

Step eight is ASSERT YOUR AUTHORITY. Boy did I relate to this chapter, as my own son is currently going through puberty as well. I learned some more about what is going on inside his body and how to truly listen to my intuition, despite what the naysayers in my life may proclaim.

Anne again graciously shares some of her less-than-stellar decisions and reactions, which helped me feel a lot better for being human. (I AM human, right?)

The doctor described how puberty is like a fire alarm going off inside your body, and how in children with Autism it amplifies sounds, smells, and crowded spaces, which can and DO reignite old behaviors. When our children endure these magnified senses all day they must have an outlet at the end of the day to release the stress.

To make your child most comfortable in their environment will help them flourish. This may mean looking at different options for school, homeschooling, or other major changes. Follow your heart, and don’t let complacency, fear, and lack of motivation squash your authority. I am currently in complacency with my own situation, and because of this chapter I was able to recognize it and start making calls about some new supports for Justin.

Step nine is DELEGATE. In this chapter, the author comes to the realization that she hadn’t been very active in ministering to her own needs because she was so focused on her child. Her tales of isolation due to public experiences with her child as well as judgment and questioning from others hit a very sore spot with me. I’ve been a single mom for eight years, so I very much related to not trusting others, feeling judged frequently, and doing everything myself. Chapter nine inspired me to merely consider opening my world (scary!) to others, including other caretakers and other parents.

Step ten is ASPIRE. Programs like drama, art and music helped tap into the right brain of Anne’s son, which slowly softened the rigid edges associated with Autism. He also became part of a swim team, which grew him to be a part of a group, yet it still met his needs for a manageable world of synchronized order.

The biggest message in this chapter is to find the balance between not hiding your child’s diagnosis but not letting it stand in the way of their progress. If we focus on the positive gifts our children possess, benchmarks will be reached and celebrated. Even independence may not be out of reach.

Anne wraps up this masterpiece with real life examples of how she put the steps into practice, letting us see that these tools are practical and tangible.  She helps us determine our own milestones and gauges for success, and gives us permission to continually reassess along the way. That’s really what it’s all about – the journey.

Anne has a website that offers much more in the way of resources, connections, and coaching. She also lays out the steps on how to start your own Step Ahead of Autism support group to help find strength, joy and encouragement with others on this path.

I’d love for you to share what you thought of this book by commenting below or posting on the SOA Facebook page!

Why Emergency Responder Education – Part I

My son was 18 months old. He was standing next to my bed, humming, as I was folding laundry and separating the piles. Then he walked out. In the time it took me to fold a pair of jeans, this child had walked to the other end of the house, found my keys, figured out which one was the car key (!), went outside, opened the trunk, and climbed in. NO EXAGGERATION.

Around that same time period, I remember driving to an errand, both kids in the back seat, and glanced in my rear view mirror with horror to see my son “surfing” on the arms of his car seat, yet the restraints were still fastened. Holy Houdini! (I went through about three of four different models of car seats that year trying to find a straitjacket-level security device!)

In First Grade, I dropped him off at school, walked halfway with him to his class (the IEP requested we start to assert some independence in the mornings… ha!) and went on my merry way after kisses and high fives like usual. It just so happened that I forgot something from the house. Coincidentally, I also needed gas that morning and went left instead of right, passing the school again. About four blocks from the school, in a direction I normally never would have traveled, was my son, walking with his backpack and singing, without a care in the world. He apparently walked right out of the building after we parted in the hallway, and the teacher assumed he was absent that day… AHHHHHH!!!! No one knew! Imagine what could have happened if I turned right that day!!!!

So these are some crises that sprouted unexpectedly within the structure of a normal day. What if there was a fire in your home, or you were in an auto accident? What if you were hit with severe weather or a natural disaster? What if your child with Autism creates a public disturbance? How would a police officer deal with him or her?

Would an emergency responder recognize the signs of Autism in your child, or would they treat them as if they were mentally ill, on drugs, or non-compliant?

Why Emergency Responder Training is Needed

Many children on the Spectrum have no visible signs of a disorder. An average child in appearance with socially unacceptable behavior that no one understands can lead to a nightmare if public safety is involved. Your child may get pushed around, put in jail, injured, or worse.

It’s vital for emergency responders to identify the signs and behaviors of Autism and learn how to make your child feel as safe and non-threatened as possible to avoid a perilous outcome. Police Officers, Firefighters, and EMTs learn about alcoholics, diabetics, cerebral palsy, and mental retardation. With as many as 1 in 70 children being diagnosed on the Autism Spectrum today, the time has come for everyone to understand! This should be part of standard training. That’s why I am called to begin such training in my own county and work my way out.

Do you think a Firefighter, EMT, or Police Officer would know how to communicate with or understand your child in an emergency? Feel free to comment below!

Stay tuned for Part II of this post… behaviors, tips, and what you can do in YOUR community to help emergency responders learn more!

It’s IEP Time… Put Our Dukes Down?

It can be hard not to go into an IEP meeting with an attitude of “me vs. them”, ready to defend your child. Especially if you’ve been pelted with behavioral labels, accused of not disciplining enough, or relentlessly badgered about why you are not medicating. And believe me, I’ve been called some really inappropriate names during some IEP meetings by Special Ed district representatives that could have cost them their jobs.

No parent should be a doormat, but I encourage you to try a shift in your attitude before your next meeting. This hasn’t been an easy journey for me, especially during the two-year diagnosis process that seemed to be more about what category my child fell in than what he needed to help him be more successful in the classroom.

However, when I started coming from a place of appreciation, partnership, and resourceful ideas the IEP process really transformed into a positive experience. I’m not saying there aren’t any challenges or issues, or that all the resources I feel should be in place are. There are still budget constraints and understaffed schools; there are still many misunderstandings about what he can help and what he does to try and ease a sensory experience. But we are much closer these days, especially when I come into the process with honesty, willingness, and an open mind.

Appreciation. Instead of balking about what I see wrong straight out of the gate, I always start with comments of celebration and sincere thanks for what the teachers and staff ARE providing.  Remember, their job isn’t easy, either!

Keep moving forward. I like to keep a solution-oriented tone in the meetings, regardless of any disappointments or misunderstandings I may have experienced in prior sessions. By focusing on what I feel NEEDS to happen instead of all the things we tried that didn’t work out so great, it keeps the whole team in a forward momentum. This doesn’t mean I ignore things that went wrong, but fixating on them will not lend anything to the outcome of the meeting. Remember, we are ultimately there to find and ask for tools that will help our children succeed.

Bring some tools of your own. I am always researching scheduling ideas, resources, and routines to help us at home. I like to come into IEP meetings with a list of things that are currently working well for us, adjusting each for the classroom if I can. I also openly talk about some of the challenges I still experience and ask for input. It’s been my experience that these simple actions can be disarming and set the stage for working together.

Keep talking about the goal. Whenever we get hung up on a certain behavior or issue and I feel things may be getting tense or heated, I sometimes break the moment with a statement like, “My goal for him is to teach him to ask for xxxx appropriately, or self-correct if he is able,” or “I’m aiming for a decrease in the need for small-group time this quarter.” Sometimes we just need a small reminder of why we are there.

Aim high. Every so often, the team will suggest a support be put in place before we have experienced it. I have actually asked for the least amount of support at times to see what my son was capable of. By assuming he will have trouble in a certain situation without actually letting him try is setting him up to aim low in the future. Sometimes they really surprise you!

Overall, it is very easy to take things personally and experience frustration in the IEP process. You know your child best. However, I have personally seen the magic that happens when I have shifted the focus to taking the higher road and keeping my side of the street clean. There’s a strange ripple effect in your world when you stop expecting everyone to be against you : )

Parents: Who Supports Us?

“Nobody told me there’d be days like these

Nobody told me there’d be days like these

Strange days indeed”

John Lennon

So you’re the parent of a child with Autism, Sensory Processing Disorder, Pervasive Developmental Disorder, or learning disability. When was the last time you gave yourself a break? Acknowledged your courage and persistence? Applauded your patience, kindness, and compassion? Admired your own strength?

If you’re anything like me, I can easily gravitate to the space in my head that flits between judgment and criticism for my parenting mistakes and frustration and exhaustion from all the energy and extra steps required to raise a child with special needs. Especially for a single parent with no family nearby! Oh, I also reside in gratitude and wonder with the gift I have been given; the charge of creating a supportive, loving environment that will allow my children to thrive.

It is good to be grateful and to focus on the positive. I do myself a great disservice, though,  if I don’t name and honor the spectrum of feelings surrounding my situation. (spectrum, did you catch that?) :)

To quote an eBook I recently devoured, The Happy Child Guide: “As parents, many of us are faced with conditions of exhaustion, loneliness and stress. We are
usually the first to be blamed for our child’s faults, and seldom acknowledged for the good.”

I replay the many times I’ve disciplined my son when he was only trying to ease sensory issues within his body and I cringe. I think about all the times I lost my patience with his failure to follow directions when he truly didn’t understand what was being asked of him. Or the times I (sometimes still) am simply exhausted from trying to do it all and I yell. I yell.

We are doing the best we can. Parents, it is OK. Don’t put those scenes on repeat playback. Don’t cringe. Forgive yourself and move forward.

What about the guilt? Do you ever grieve? Do you ever wish the road wasn’t this rocky? Do you ever look at children behaving in a restaurant and suddenly find yourself beating down that little green monster, thinking, “why can’t I have that?” What about vacations? Flying? Going to the movies? Festivals? Do you ever feel deprived or robbed of experiences that at the moment seem impossible for your family? How about the frustration of all the IEP meetings and discussions with the schools?

Honor and release ALL your emotions

It’s OK. It doesn’t mean you love your child any less. It doesn’t mean

you are not grateful. It doesn’t mean you are selfish. It doesn’t even mean you wish things were different. We’re human. If we don’t allow these emotions to come to the surface and honor them, we cannot release them. They will fester.

I spend a great deal of time researching and talking about the right kinds of support for our children. Tools, resources, therapies… and I am glad to be able to bring you these things. But I forget perhaps the most important piece of the puzzle. If our bank is empty we having nothing left to give to them. We need support, too.

I would love to hear some of the things you do to honor, celebrate, and support yourself as a parent. And I would personally like to applaud you in your journey. Congratulations. Thank you for being you.

It’s Summer Camp Time Again… HELP!

I won’t lie, this time of year typically throws me into a panic.  Memories of being burned repeatedly and having my poor son bounced from program to program each summer makes me dread the search for a summer camp solution that is within a single parent’s budget yet offers my child the support he needs.

I always assume that providing all pertinent information, tips, schedule samples, copies of the IEP, challenges, typical behaviors, and dietary restrictions up front will be sufficient and ensure success for all parties involved. Then, usually a week in, I get a call from the director who acts blatantly surprised and shocked that my son is having problems in large, loud groups and is acting out.

My all-time favorite exchange with a camp director was when my child was expelled from the Recreation Center program for the fact that he had to be watched. Devastated, I reminded him that I interviewed with him personally about my son’s situation, filled out all the appropriate support forms, and even provided extra sensory items. “You assured me you were equipped for special needs children.”

“Main stream special needs,” he replied.

“Main stream special needs? What does that mean?” I asked.

“Kids that act like everyone else.”

Ouch. Ignorance at its finest. I didn’t fight him, because I no longer wanted my son there anyway! Trust me, we never let the door hit us on the way out :)

Anyway… I think this list of questions for prospective summer camps for your child with Autism may help. I don’t want anyone to go through what I have these past few years!

Questions for Prospective Summer Camps for My Child

  1. What is the teacher/child ratio?
  2. Does the staff have experience or background in Autism and Sensory Integration issues?
  3. How are disruptive, sensory-seeking behaviors handled?
  4. Is anyone qualified to dispense medications (if applicable)? What is the procedure?
  5. Is there ample staff to watch my child at all times (who may be prone to wandering)?
  6. How many breaks will be provided?
  7. Are there other special needs children enrolled in the program (if it is not a special needs camp)?
  8. Are there alternative plans for field trip days if my child does not go? If he/she does attend and has a meltdown at the venue, how is it handled?
  9. What behaviors are absolutely not tolerated, and what warning system is in place for parents?
  10. How do you communicate best with parents regarding day to day progress?
  11. Can my child bring food from home due to a restrictive diet?
  12. How are behavior issues handled in general? (not sensory related)
  13. Are toys or comfort items from home allowed?

Hopefully this gets you started down the right road in finding a great fit for your child. The answers to these questions should provide a good indicator of the facility’s willingness to put your child’s success before their convenience or fulfillment numbers!

Some good resources to Special Needs camps can be found at AspiresMy Summer Camps or Your Little Professor.

How to Make and Use Emotional Stage Index Cards

When speaking about Emotion Cards, there are two different types of uses and benefits: helping the child identify others’ unspoken emotional cues and helping identify the child’s own stages before a potential meltdown.

Both are extremely helpful in introducing emotional identification, understanding, and regulation. Last year my son and I created Emotional Stages index cards and they proved to be invaluable. During his first grade year I believe they were responsible for a real quantum shift toward our goal of helping him identify and self-correct some of his pre-meltdown behaviors.

The challenge

What we were finding in school was that during certain transitions throughout the day he would start exhibiting behaviors that indicated his difficulty adjusting in some capacity. Handled incorrectly or ignored, these behaviors would quickly spiral toward loss of control.

My idea was that I wanted him to start to recognize when his body or senses started feeling a little squirrelly so that he could either self-correct if able, or ask for help appropriately (e.g., a sensory break or a walk around the school with the special ed professional).  By teaching him to identify the signs and stages of losing control, he could hopefully have access to the support he needed and decrease the number of incidents where his behavior did reach that point of no return.

The cards

Justin and I took five index cards and numbered them one through five. We then drew a face on each one, with number one being calm and happy. These faces progressed with two and three – feeling a little uncomfortable and weird – and on to four and five, which represented needing help and finally a complete meltdown.

We then laminated them, punched holes in the upper left corners and put them on a key ring for him to carry with him. Each morning I walked into class with him, did some sensory exercises, and asked him to identify how he felt with one of the number cards. In most cases, the amount of exercises done would directly correspond to his number, and our goal was to have him at a one or two before I would leave the classroom for the day.

The result

This number system quickly became a simple means to have him check in with himself throughout the day. For numbers three and four he had a set list of appropriate suggestions to help him get back to a one or two. Even when we experienced days where a five was reached, the stage was at least identified quickly, allowing the teachers to activate an “emergency plan” we wrote into his IEP.

I honestly feel that having Justin create these cards with me and begin to use them really helped him get to know himself in a systematic and linear way that he could clearly understand. They helped him with his feelings, they helped take the guesswork out of the picture for the teachers, and they helped our family both at home and any public outings.

What have you used in your house that helps identify emotions and stages of behaviors? I’d love for you to share!