Because You Have Autism

It has taken me several weeks to process my emotions and attempt to compose this blog posting.

While I typically have the answers to Mike’s question, this one left me speechless – unable to respond. In my mind, all I could conjure was because you have autism. Knowing that Mike would not be able to process the cruel realities of that response, I simply tried to redirect his attention elsewhere. While I successfully redirected Mike, the incident has been haunting me.

Last month, we celebrated Mike’s birthday with a dinner party at Outback Steakhouse. A few of Mike’s teachers and classmates joined us in the celebration. If you follow my blog, you have heard me mention Mike’s special friend, Lisa.

Lisa and Mike were classmates for four years and developed a true friendship. I have taken Lisa and Mike to Disney World, movies, school dances, dinners, and all of the school functions offered. They ate lunch together in the lunchroom and on occasion would even hold hands. In the most innocent way possible, Lisa is Mike’s girlfriend.

Mike and Lisa had not seen each other for several months prior to his birthday dinner and they were thrilled to be together. They sat at the end of our long table watching YouTube videos on Mike’s iPad, both smiling – happy to be together.

As we were leaving the restaurant, Mike grabbed my arm and said, “Lisa goes to the doctor to get a baby.” The comment jolted and confused me. I had no idea what he was referencing. In my mind, I started sorting through the catalogue of movie and YouTube scripts. I was stumped and a little concerned that other people heard his comment. I tried to shush him and redirect the conversation to his birthday, but he was determined to make me understand. He repeated the statement again and held up his iPad for me to see.

On Mike’s iPad was a cartoon picture of a family. The mom was in a hospital bed holding their new baby and the dad was sitting next to her. I immediately understood what he was saying and it was as if I knife had been plunged through my heart.

Mike understands the seasons of life. He wants what everyone wants – a family of his own.

That night as I walked our dogs, the tears started to flow. How do I tell my son that he cannot have what everyone else has? How do I explain that his life is ‘different’ and NOT equal? How much does he really understand? How much pain and longing will he experience throughout his lifetime?

Today, as I sit here writing, tears streaming down my face, I still do not have the answers. The only one I can come up with – because you have autism.

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“Thank You, I Needed That”

Several years ago, during one of our holiday trips, we went shopping at Downtown Disney. For those who are not familiar, Downtown Disney is an open mall, filled with shops and restaurants. The stores were very crowded with vacationers and locals enjoying the holiday decorations.

Mike, as always, was walking in front of me. I typically walk behind Mike. I am able to guide him through crowds verbally and redirect him, as needed. Also, he tends to walks at an extremely fast pace, whenever I get ahead of him, he speeds up to pass me.

As we were walking through one of the stores, Mike spotted a young man standing in line to check out of the store. The man was in his 20s and had two prosthetic legs. I can only assume that the young man was a war hero. His father was standing behind him and noticed Mike’s course correction in their direction.

Mike was on a MISSION and, in his excitement, picked up his pace. I immediately knew where he was heading and started chasing after him, calling his name – anything to slow him down. In my mind, I was hoping that I could explain his autism before he invaded their space.

As I was rushing over, I locked eyes with the young man’s father, he smiled and mouthed, “it’s okay.” I immediately felt some relief – at least he understands.

As we approached, I began apologizing. I started explaining that Mike has autism and is attracted to uniqueness in individuals. Before I could get the words out, Mike hit the floor to examine this young man’s prosthetic legs. Did I mention that we were standing in a crowded store! I was HORRIFIED!! The young man and his father were extremely kind and understanding – assuring me that it was alright.

As quickly as he hit the floor, Mike stood up. He looked the young man in the eyes and said …

“HIGH FIVE, Robot Legs – AWESOME!”

The young man gave Mike the high five, looked at me, and said …

“thank you – I needed that.”

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Jerry Seinfeld, NO AUTISM FOR YOU!

Jerry Seinfeld announces that he might have autism

– and the crowd goes wild!

After reading a few of the rants, I am left with only one question, ‘when did autism become a competitive sport?’

On occasion, I find myself asking this question when I read my blog. It typically plays out like this…

POST: Send help, Mike has repeated, “her skin turned to ice – her hair turned white” a million times.

     COMMENT: You should be thankful your son CAN talk.

     COMMENT: I would give anything to listen to my child script.

The comments are jolting and typically turn an otherwise positive outlet for parents into an uncomfortable downer. We are all affected by autism, why should any of us be thankful for the trials?

In case you are feeling isolated, please know, we ALL wish your child could talk! While I am happy that Mike has some language, I wish he could have a conversation that did not include movie scripts. Autism or not, as a parent, we ALL wish we could eliminate the challenges our children face.

Accepting autism is a process, wherever you fall on the spectrum, there are hardships, and there is humor.

For me, humor has been my lifeboat. As soon as I was able to laugh, I knew I would be okay. It takes a measure of acceptance to laugh through your life – whatever you are dealt.

I have the unique background of being an autism parent and an autism clinician. I have worked with countless families covering the full spectrum.

To the parent of a child on the lower end of the spectrum who is envious of the parent whose child is on the higher end of the spectrum, I say, be careful what you wish for. If autism were a competitive sport, there would be very few winners.

I can assure you, sitting on the floor of a school bathroom, crying with a 12-year-old with HFA because he cannot understand ‘why’ he does not fit in SUCKS!

In that moment, I was not thinking – gee, I wish Mike could experience this. Quite the opposite, I was thinking, I am so happy Mike does not experience this – he is HAPPY! While he has some desires beyond his limitation, for the most part, he is comfortable in his own skin.

From the outside, we can all look at Jerry Seinfeld and envy his success, for none of us truly knows his struggles – nor are we entitled to know them. I believe George said it best …

 “Jerry, just remember, it’s not a lie if you believe it.”

– George Costanza

So, lets all put away our daggers. Let us unify and focus our envy on the people who REALLY deserve it – the smart people, with money and vacation homes. The people who get enough sleep and have nice clean homes. You know them – the people who do not have any children at all!

It’s a JOKE –Yada, Yada, Yada – Serenity NOW!!!

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My Haunted House

I hear footsteps, crashes, doors opening and closing, voices, and strange noises on a regular basis. I am often jolted from my sleep in a panic. I am unable to locate objects or find that they have been moved. I often find things inexplicably broken.

Yes, my house is haunted – It has been for years.

In the movies, we often find ourselves wondering why the families do not move out of their haunted houses. Why do they subject themselves to the stress and anxiety of living with ghosts? Who would want to live in fear, waiting for the next haunting to occur, always on edge and unable to fully relax in their own homes? Why do they stay?

For me, the answer is simple. Moving would be pointless, there is no eluding the ghosts. They haunt me wherever I am. Even in solitude, there is no reprieve, for I know the phone can ring at any moment. A single call can rip me from a seemly normal routine and turn my day upside down.

Several years ago, I used that analogy to describe to a friend what it is like living with autism. I have never been able to come up with a more accurate description of my home life. I live with a heightened sense of awareness, constantly monitoring my environment for unexplained or unwanted noises and even silence. For I know from experience that any of those things could mean disaster. The unexpected is expected – it is only a matter of time.

Among other thing, over the years, those unexpected sounds have included broken lamps, a TV being pulled off of the stand, leather furniture being punctured with a candlestick, broken glass on a fireplace, the pool cleaning brush breaking out the screens of the pool enclosure, a stuffed animal being sucked into the pool pump system, and a $12,000 flood.

If you are the parent of a child with autism, you know exactly what I am writing about. Being jolted from our ‘normal lives’ is our normal life. We are constantly on edge and alert. Even sleep, when we get it, brings little relief. Being jolted in the middle of the night is a common occurrence.

It is not surprising to learn that many parents suffer from depression, anxiety attacks, and even posttraumatic stress disorder (PTSD). We never fully ‘turn off’ from our commitment and responsibilities. We are on call 24 hours a day, 7 days a week, 365 days a year and it never ends.

While I am ‘haunted’ ‘less frequently now that Mike is older, I am no longer ‘living with the ghosts.’ Simply put, we cohabitate. I am unaffected and unfazed by situations that would cause most people to run for the door. For me, accepting cohabitation was the only way I could gain control and achieve happiness. It was a choice to let go of being irritated by the accommodations one must make to live in a haunted house. By making that choice, I have been able to find my happiness within his happiness, even when it inconveniences and/or annoys me.

I have accepted that my house will always be haunted. I have been able to exercise the most annoying ghosts and even enjoy some of them. Thankfully, for now, the ghosts have not been as startling but who knows what tomorrow might bring? See that is the thing about living in a haunted house – you never know what will jump out to get you next.

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My Favorite Ghostbuster

GOOD NEWS FROM THE FUTURE: Blog Addition

I am actually forcing myself to write this blog posting because of the emotion it is going to stir in me. I doubt I will get through it without tears. Now, before you stop reading, I should tell you that they are tears of happiness.

A couple of days ago, Mike started Special Olympics bowling. I am fortunate that Mike attends an amazing school with teachers that are beyond dedicated. In short, they are not just teachers – they are family. While none of them have disabled children of their own, they go beyond the scope of the classroom. They volunteer to coach their student’s Special Olympics teams. Their dedication ensures that the students can participate. They provide an added layer of comfort for their students and parents. We do not have to worry about a ‘learning curve’ with a new coach.

As most of you know, Mike ate chicken nuggets for the first time in 14 years at this bowling practice. While I am shocked and thrilled at this progress, it was not the highlight of the day for me. That came from watching my son and quietly acknowledging the progress he has made.

As I sat back and observed him, I reflected on the years of pain I had while watching Mike participate in activities. He required constant prompting and always seeming disconnected from the group. Since he would wander away and his behavior was unpredictable, I always had to hover over him. It was work and, to be honest, not much fun for me. For the love of my son, I pressed on – and on this day, I reaped the benefits of my hard work.

As I watched him, I realized that he has changed. He is not disconnected or isolated anymore – he fits in with his peer group. To be honest, he is actually quite popular. His friends get him and play along. They laugh when he is goofy – they script with him – and they tell him to “SHUT UP” when he is annoying. It is all so very normal – and yet so very magical. (Here come my tears)

When Mike and I arrived at the bowling alley, he bolted through the door and headed straight to his FRIENDS. We have never been to this bowling alley, so I quickly followed him, in case he decided to disrupt other bowlers. My anxiety subsided as I saw him approach his friends. He smiled when he saw them. He greeted them by name. When a classmate avoided his greeting, he bent down to her eyelevel and forced a “hello Mike” from her.

He took off his shoes, put on socks and bowling shoes, only needing my assistance to tie the laces. He grabbed a few balls and placed them in the rack. He waited his turn and watched his teacher enter his name on the scoreboard. He moved around the group of approximately 20 kids and interacted with them. When the bowling started, he followed the game and knew what to do. He cheered and high-fived his friends when they bowled a strike. He looked for praise from others when he bowled a spare. At one point, he ordered food from the snack bar – calling me over to pay, of course.

Directly behind where the kids were bowling, was a sport’s bar area. I sat in there with Mike while he ate and remained there for the bulk of the practice. I was able to watch him, in case he needed me. I was able to sit, relax, and enjoy my son’s bowling practice.

The wonderful part – he did not need me!

 

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Trick-or-Treat Party

I never worry about Mike being left out of parties –

I am always too busy hosting our OWN, BETTER PARTY!!

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For the past five years, I have hosted a Trick-or-Treat party for

our school’s Raider Buddies group. Our group averages approximately

50 ESE & typical students, teachers,

parents, and friends.

 

To ensure a successful and EASY party, I have streamlined the organizations.

Here are some of MY helpful party tips:

 * Send invitations EARLY and OFTEN, especially if you are dealing with high school kids- typically the first week in October (I’ve included a copy of MY flyer) …

* DO NOT LEAVE ANYONE OUT!!  If you have students living in group homes, as we do – arrange transportation/carpools EARLY. Oftentimes, proof of insurance is required to transport students that live in group homes. (It is very simple – just don’t wait until the last minute.) I actually invite the entire group home to participate. Last year, we had a developmentally delayed 39 year-old woman who Trick-or-Treated for the first time in her life.  She talked about it for MONTHS!

* Seek donations for Trick-or Treat bags – some kids will show up without them.  My grocery store hosts a Halloween event and is HAPPY to supply our group with bags.

*  Make sure EVERYONE has a costume. I typically keep some face paint on hand, just in case.

*  Have water bottles and stick one in every student’s bag.  We are fortunate to have a golf cart follow our group.  It carries extra water and assists when students (AKA Mike) get tired.

*  Have a CLEAR pick-up time on your invite.

* BE ORGANIZED:  I typically do not allow the students INSIDE my home for this event. If I do, they will make a mess and I will never get them motivated to leave on schedule.  I organize the bags, water bottles and candy, on tables, in my driveway.

* To ensure that my neighbors are prepared for a group of 50 or more teenagers, I send a flyer to ALL of my neighbors, notifying them of our group (I’ve included MY flyer).

*  Have an adult or typical student LEAD the group.  We pair our kids up with their buddies, but assign a LEADER to notify the homeowner that our group in there.

*  Snap a group picture and SEND A THANK YOU CARD TO YOUR NEIGHBORS! They will LOVE this and feel good about supporting our kids!

*  Invite your principal.  He/she probably will not come, but make them aware of the event. I am hoping to get some press coverage this year. 🙂

*  Bring flashlights

 

 

MY NEIGHBORS LOVE OUR GROUP!! Last year, I had a neighbor drop off candy and treats for our kids, prior to Halloween because she was not going to be home.  I also had a neighbor write a letter to our school board members bragging about our students.   

 

Raider Buddies

Trick-or-Treat Party

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 You’re Invited to Trick-or-Treat

with Your Buddy!

At Mike’s House

XXXXXX

XXXXXX

XXXXXX

 

Halloween Night

6:30 – 8:30

Please come in your costume!  Bring a flashlight, candy bag, and

eat dinner prior to arriving.  We will be leaving promptly at

6:30 to Trick-or-Treat

If you need a ride or a costume,

contact Ms. XXXX

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Dear Neighbor,

My son, Michael has autism and is a special education student at XXX high school. I have invited the Raider Buddies club to Trick-or-Treat our neighborhood on Halloween night.

Raider Buddies is a school-sponsored club that encourages friendships between general and special education students.

Please be advised that some of the ‘special students’ in our group have challenges with language and personal space.  Some of our students can be fearful of scary costumes.  We will assign a leader to notify you when our group is approaching. I would appreciate your cooperation in not attempting to jump out to scare the students. While they are high school students, developmentally most are significantly younger. Also, one of our students is blind and navigating an unknown location can be challenging for him.  In addition, taking just ONE piece of candy can be a difficult concept for some of our kids.  If possible, I would prefer that you hand the students the candy, rather than allowing them to grab a handful.

I’m anticipating a group of approximately fifty (50) special and general education students, faculty, and parents.  I recognize that this is a large group, if you have an financial concerns about providing the extra candy, please call me and I will deliver you candy to provide to our group.

They are a wonderful group of kids – I promise they will not Trick, as long as you give them some Treats!

Thank you & Happy Halloween,

 

Autism Hippie

 

As you can see, I have done ALL the work for YOU!!  I hope

I have motivated you to get involved and plan your own

Trick-or-Treating party! 

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AUTISM HIPPIE TOP 20 IEP QUOTES

 

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1. “Do you seriously want me to bury you in paperwork?” -AH

2. In response to an Assistant Superintendent asking, if I felt intimidated by the 30 people the district brought to Mike’s IEP meeting to intimidate me.

“Not at all, I’m only intimidated when I’m impressed!” -AH

3 “Our tax dollars hard at work.” -AH

4. “You’ve never met my son, how do you know that he would benefit from group speech?” -AH

5. “You’ve convinced me! He cannot hold a crayon but I think he will love participating in your violin class. I look forward to the public performance.” -AH

6. “I’m sorry, but violin class is part of his IEP, which is a legal document. If you would like to change your recommendation, you need to call for another IEP meeting. Until then, since you are legally obligated, I expect you to implement the IEP.” -AH

7. “You’re a government employee. I’m a taxpayer – you work for ME.” -AH

8. “According to YOUR website – that’s the law.”-AH

9. “Before we proceed, I’m going to need that in writing.” -AH

10. “According to your data sheets, among other things, Mike knew the phonetic sound to the letter M on November 3rd. Is that correct?” –AH

“Yes” – The Districts CBA – the man has a PHD

“Your name is on the data sheets. Are you the person who worked with him?” -AH

“Yes.” – CBA, PHD

“Before you falsify legal documents to present at an IEP meeting, you really should check the attendance records. November 3rd is Mike’s birthday – he was not at school. I guess we all agree upon the Independent Assessments at District expense now!” – AH

11. “… and you’re a Certified Behavior Analyst?” -AH

12. “How do you become the Superintendent of the 10th largest school district with a degree in agriculture?” -AH

13. “You do realize that the kitchen is in the classroom for a reason. Under the Freedom of Information Law, I would like a copy of the school budget for the Culinary Program and the ESE life skills cooking program. Something tells me that the typical students are cooking with actual food.” -AH

14. “I’ll be here EVERY day!” -AH

15. “I’ll be here until you do your job.” -AH

16. “How do you know he can walk up and down stairs alternating feet?” – AH

“I watched him entering the building.” – OT

“He arrived in a stroller – I guess we all agree upon the independent assessments at district expense now.”-AH

17. “As a professional, I bet you’re embarrassed by your recommendations.” -AH

18. At the end of an IEP meeting: “I’d like to call another IEP meeting.” -AH

19. “Do you mind moving, I’d prefer to sit at the head of the table so I can see everyone’s happy faces.” -AH

20. “Before we get started, I’m going to pass around a piece of paper. Please provide me your name, title, supervisor’s name, phone number, email address, and the number of times you have observed and/or interacted with my son.” -AH

21. “This is a Title 1 school, you’re receiving additional funding to lower your class sizes. If your Kindergarten class is going to have close to 30 students in it, someone is misappropriating funds.” – AH (Later found out she was my new neighbor.)

 

BONUS: Ten years after leaving the public school system, the Director

of Special Education whom I dealt with retired.

I sent her a retirement card…

 

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IEP Doctor’s Note

The IEP season is just around the corner. As always, I’m here to help …

To Whom it May Concern –

(insert name here), is a patient in my medical practice. He/she has recently been diagnosed with an extremely rare form of Situational Tourette’s Syndrome (STS).

This rare form of STS is a neurological disorder characterized by involuntarily shouting and obscene vocalizations during stressful situations. In some severe cases, patients have also exhibited involuntary hand gestures, clenching of teeth, pacing, name calling, eye rolling, heavy sighing, ripping of paper, and an excessive use of sarcasm.

While the research into this disorder is still in its infancy, we are seeing some commonalities among our patients. The early data is indicating that the disorder is occurring exclusively among parents of children with autism. Further research is indicating that the most severe STS ‘outbursts’ are occurring during IEP meetings.

As you are aware, the Americans with Disabilities Act (ADA) prohibits the discrimination of individuals on the basis of their disability. As professionals, I’m certain that I don’t have to remind you that ANY of the above mentioned ‘outbursts’ must be ignored. Any attempt to retaliate against my patient, or my patient’s child, based on their outbursts WILL result in legal action.

Regards,
Autism Hippie, MD

(Feel free to present this at your next IEP meeting – being an autism mom qualifies me as a doctor.)

Another Milestone Lost

It’s that time of year again – prom season. It’s the time of year when I avoid my Facebook Newsfeed like the plague. The pictures of my friend’s teenagers eat away at me. I look at my friend’s son who was born around the same time as Mike and feel the giant gap between our boys. This year, the pain is compounded by the reality that Mike is a senior. He should be preparing for graduation, packing for college, and attending the prom like the rest of his classmates. He is not.

If you follow my blog, you know how deeply I love, accept, and celebrate Mike. I’ve rejoiced with every milestone; knowing how much effort basic tasks are for him to master. I do my best to approach each day with acceptance. I have mastered the art of burying my pain and remembering that each day is a gift. This year, I’ve been having a difficult time pushing away the painful realities. I’ve received college brochures, been solicited for graduation announcements, and even received a call from a military recruiter. There have been countless little ‘hits’ that I’ve had to push out of my mind and heart. At the beginning of the year, I was provided a graduation packet that included a form to order Mike’s cap & gown. I glanced at it and stuck it in a pile of papers on my desk. I haven’t been able to open the packet since, and the deadlines have past.

While I’m proud of Mike’s accomplishments, I’m also feeling melancholy. He is graduating, but returning to the same school for four more years. He will be there after his younger sister matriculates to college. He will be there until he is twenty-two years old.

After painful consideration, I’ve decided to skip Mike’s high school graduation ceremony. While I have no doubt that his school and teachers would provide whatever accommodations necessary to ensure that his participation would be without incident, I’m just not sure that there is anything that could accommodate ME.

I know that I won’t be able to sit in an audience and watch his typical peers transition to life without feeling immense sadness. I don’t want to listen to speeches about opportunities and the future. I don’t want to see Mike sitting in the crowd of students with headphones on and playing on his iPad. I don’t want to spend his Graduation day mourning for his reality.

I’ve decided to celebrate Mike’s accomplishments in a manner that he will enjoy. I’ve decided to have a private party with his friends and family. I’ve decided to avoid the traditional and opt for the personal. In all honesty, a private party is probably the greatest graduation present I could give him. It’s an accommodation that will let him be ‘Mike’.

 

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Behavioral Meltdowns

In my previous post, https://autismhippie.wordpress.com/2014/03/12/meltdowns/, I described my approach to sensory meltdowns.  Basically, a sensory meltdown occurs when the individual is overwhelmed and unable to process their surroundings.

Then there are behavioral meltdowns. These are more like temper tantrums – at a significantly higher level. The individual typically wants or doesn’t want something. For an individual with communication challenges, these can be extremely frustrating. There is a sense of urgency that they’re not being understood. The behaviors tend to escalate because the need is not being met. Oftentimes, a behavioral meltdown escalates into a sensory meltdown.

When Mike was little, he did a great job using meltdowns to get his way. There is power in meltdowns and it’s an easy tool.  He barely had language, so I was constantly reinforcing his requests. When I tried to deny them, he would protest, oftentimes leading to behavioral meltdowns.

While a behavioral meltdown can be challenging, there is only one way to reduce their occurrences. The child must be taught to understand “NO”.

Sounds easy enough – LOL! Trust me, I have bought the toy to avoid the meltdown. I have conceded the fight on many occasions. It’s embarrassing for parents and with therapy appointments to get to; it’s often easier to give in.  Then it occurred to me – Mike is smarter than that.  He can learn to deal with ‘NO’. Actually, he HAD to learn to deal with ‘no’.

I also had to come to terms with my own guilt.  I had moments where I felt so badly for Mike’s struggles that I would have bought him an elephant, if it had made him happy. I tried to compensate for his challenges with things.

At some point, I finally recognized that I couldn’t afford to fulfill his every demand.  Furthermore, I was harming him by doing so.  Eventually, someone is going to tell him “no”.  Did I want that to occur when he was 60 or 200-pounds?

I have always been conscious of the fact the Mike was going to be a large man. I knew that I had to be very consistent and follow through with consequences.  I had to maintain control and leadership over Mike to keep him safe.

So, I started out on my quest. Since most meltdowns seemed to occur when I was rushing and/or carrying my then, toddler daughter, I planned opportunities to practice teaching this skill. I brought him to stores during the morning hours when the crowds were minimal and my daughter was at preschool.  I selected stores that sold desired items.  In essence, I set him up to have a behavioral meltdown.  At first, I allowed him to select one small item, which would be given to him when he calmed down. Since I planned these life-lessons, I was able to remain calm.  I was prepared to block-out the stares and ugly looks from random strangers.  I was prepared to spend as much time as we needed to ride out the meltdown. Since leaving the store without the desired item was a challenge, I was prepared to carry him to the car and soothe him there. I lived in Washington at the time, so dog days of summer were not an issue.

My focus was on remaining calm and comforting my child while he learned that life was not going to always give him EVERYTHING he desires. I utilized the same calming techniques described in my posting, Meltdowns.

Since these outings were educational – I maintained a random pattern. I didn’t want Mike to get anxious every time I took him to a store without his sister. As we progressed, I included my daughter during the outings.  Since she was used to receiving ‘guilty-mom’ items too, it was a learning experience for her, as well. At times, I would allow desired items.  At other times, I did not. Which I might add, is life!

Today, Mike rarely has meltdowns with me.  He understands that I follow through with consequences and I’m not scared of him. I am able to refuse certain inappropriate video games or movies he requests. He has the opportunity to earn desired items and/or wait for the next gift-giving holiday.  Which, I might add, is life!

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