Weekly Wrap: Vaccine Concerns Are Not Conspiracy Theories
Dear Parents, You are Being Deceived about Vaccines and Autism

A Typical Birthday Turned Terribly Wrong

Birthday CakeBy Cathy Jameson

The public is fed carefully crafted stories of communities coming together to celebrate autism.  We’re told to look away from the causes and to accept the growing rise of autism in mainstream news articles.  Those autism stories are full of rainbows and unicorns.  The story I’m sharing today is not one of those.

Unless they’ve discovered alternative news sites like ours, the general public rarely sees the other side of autism, the side that includes daily struggles, disasters and pain.  That’s what today’s post is about.  I wrote it January after Ronan and I had come home early from a birthday party.  I hadn’t planned on coming home as early as we did, and I didn’t mean to leave the story sitting in my writing file all winter long either.   I put it, and the emotions that came with that day, aside. 

I’d love for rainbows and unicorns to be in all of my stories.  I really would.  But my son’s autism, and the reality that comes with it, can sometimes be very, very different. 

xo, Cat

We’ve been hanging out with another family for over a year now.  They have two boys around the same age as my younger children.  Our kids go to different schools, but BBQs, weekend parties and scheduled playdates keep us in touch every few weeks.  Even with how busy our own family’s schedule is, and with how uneasy and sometimes unpredictable Ronan’s behavior can be in social gatherings, I look forward to seeing these friends.  From catering to his dietary needs to making sure Ronan’s favorite movie can be quickly started, spending time outside of our own four walls with this family is easy to do. 

Ronan has had great success at each visit to their house, so it was a no brainer that we’d join the family for their boys’ birthday party on a Saturday afternoon.  Parents were invited to stick around for adult conversation and snacks while the kids enjoyed birthday party activities.  My husband was scheduled to be out of town for over a week, including that weekend, but I knew that by the time the boys’ birthday party rolled around I’d want a break from being a temporary “single” parent.  Because Ronan was doing so well at previous social gatherings, I happily accepted the invitation.  

I don’t usually have to prepare Ronan for a visit to the house in advance because he knows what he can and can’t do.  He knows what he can and can’t touch.  He knows what he can and can’t eat.  He knows he’s welcomed with open arms and that all of his needs will be met.   But, because of the birthday excitement that greeted us the moment the front door opened, Ronan became anxious and clung to me.  The group of kids who had already arrived, and the volume of their noise, was overwhelming.  There were new kids.  There were loud kids.  There were lots of kids.  And there were more kids waiting to walk in behind us. 

I didn’t realize how many different people, sounds, activities and smells Ronan was going to face.  I always welcome extra attention from Ronan because he usually prefers to be by himself, but the anxiety he felt the instant we walked into the house not only gripped him, but it gripped me too.  My four typical children scampered off to join the other kids, but Ronan stayed next to me.  Leaning closer to me and reaching for me, Ronan grabbed my hand and held it tightly. 

Not wanting to rush Ronan, I walked toward the kitchen and said a quick hello to our friends letting them know we had arrived.  I nodded to the other parents hoping to introduce myself but bypassed the festivities to try to get Ronan settled.  He needed to relax before I could.

I walked us over to his usual spot where Ronan is the most comfortable in the house and I stayed with him.  He’s usually quick to get comfortable and as long as one of us has “eyes and ears on Ronan”, I can take a few minutes to socialize.  Not this time.  Ronan was still glued to me and wasn’t about to break the seal. 

Taking a seat on the couch in the playroom, Ronan scanned the room.  He watched the typical kids doing typical things, but again he became overwhelmed.

They were just being kids.

But there were too many of them.

They were just playing games.

But there was too much going on.

They were just laughing and enjoying typical birthday activities.

But they were being too loud.

Retreating into me once more, I gave Ronan a hug.  I reassured him that I was not going anywhere.  I rubbed his back and also applied deep pressure to his joints—something that usually begins to calm him.  It didn’t work though.  Ronan was already at heightened alert.

I rubbed Ronan’s back again.  He reached for me and then lay his head in my lap.  He looked up at the kids and their commotion and sighed a heavy sigh.  We sat together for almost ten minutes which is an unusually long time for Ronan to be that still.  He’s an on-the-move kind of kid never staying in one place for too long.  But that afternoon he sat.  He sat, and he watched.  He stared at the kids.  He listened to them.  He was quiet.  Ronan sat very still and took it all in. 

At one point, Ronan looked up, pointed to the boys playing Wii and attempted to ask them with sign language to play.  The other kids were too absorbed in their game to notice.  Ronan got up and reached for a Wii disc that was on a bookshelf next to the television.  It was the Wii Sports disc that he loves to play at our house.  He tried again to interact with the kids, some of them we’d never met, but was unable to get their attention. 

I had to think fast.  The boys at the Wii had every right to continue to play.  But Ronan was doing everything right to ask for a turn:  waiting patiently, asking (with signs and gestures) politely, standing behind them instead of ejecting their disc and shoving his in like he sometimes does at home with his siblings. 

Hoping he’d be next, but knowing this wasn’t the right place for Ronan right now, I made a decision.  We needed to leave.  I told myself, Take the Wii disc, and leave.  It was only going to get louder as another handful of kids had just tumbled into the room and began to chase each other with plastic swords. 

As much as I didn’t want to go, I knew what would come if we’d stayed: frustration, misunderstandings, meltdowns and more.  I’d rather Ronan and I walk out now before the party really got started and before things got louder and more difficult for him.  But it was already too much for Ronan. 

As we made our way toward the front door, I could see and hear that a few more people had arrived.  It was now not just loud, but incredibly loud.  More parents had stayed and were mingling in the kitchen.  Too many things were moving this way and that.  With all the activity and with Ronan’s safe spot on the couch now being used as a trampoline, this wasn’t working.  We needed to go. 

But I hesitated.  I hesitated because, as we got closer to the kitchen, I remembered that Ronan’s favorite movie could be played on our friends’ computer in the den.  If I could direct Ronan through the kitchen to the den and then shut the door that separated the two rooms, maybe we could stay. 

I got us situated in the quieter room and showed Ronan the movie case.  Starting the movie and praying it would help calm him down, I hoped I could buy time to reduce Ronan’s anxiety and to stick around a few minutes longer.  But something was wrong. 

The movie wouldn’t play.   And now it wouldn’t eject.  Ronan kept signing ‘movie play yes’.  Facing a potential meltdown, I tried once again to get the movie to work.  Ronan didn’t understand.  He tried to keep calm, but with the noise of the party, and with kids now running in and out of the den and getting too close to Ronan, it was too much.  Ronan was done. 

Let the meltdown commence.

I was on the brink of panic mode but made sure to remain quiet and calm.  I assessed the situation once more and mapped out our escape route.  The den had another doorway that lead to a sitting room.  We could sneak through the sitting room and then to the front door.  I could text my friend when we got home apologizing for leaving early and would come back for my other kids when the party was over.  I hated to go, but I had to find solitude for Ronan elsewhere. 

I managed to lift Ronan up and got us halfway through the sitting room, but he slinked away from me.  Dropping to the floor, it took everything in me to pick him up again.  I lifted Ronan, but he yelled out and kicked his legs.  He wiggled farther away and protested.  We were not going to be leaving any time soon, nor would we go quietly.

Still protesting, but finally safe in my arms, I headed toward the front door.  One of the moms had excused herself from the kitchen to take a phone call on her cell phone.  Standing in the small foyer that I had to walk through, she was blocking the final steps that I needed to take.  I thought, Of all times!  She’s trying to have a normal conversation, and I’ve got vocal protests and angry arms and legs being swung at me. 

She looked toward me, and I cringed.  I thought, Oh, no.  Do NOT look over here.  Look away, lady, and wrap it up.  Make it fast.  Go back to the party.  Please. 

Hanging up, she darted back to the kitchen as soon as her call was over.  Thank goodness because the last thing I wanted was for us to draw unwanted attention from a group of strangers.  I prayed they wouldn’t notice.  

I muttered to myself, Keep sipping your drinks.  Go ahead, tell another joke.

I thought sourly, Whatever you do, please don’t look over here.  And if you do happen to glance our way, please don’t say anything.  You have no idea right now how lucky you and your children are.

Then I thought, no.  NO!  These other parents need to see this.  They need to know what is happening.  They need to know how hard this is for Ronan and for a generation of children. 

I wanted to scream, LOOK AT ME!  LOOK AT MY CHILD!  See what he’s going through!  On bad days like today, like RIGHT NOW, THIS is HIS normal, THIS is MY normal!  THIS is OUR LIFE!  He didn’t ask for this. I didn’t either.  How I wish it didn’t have to be.  How I wish I could’ve prevented this.  But, it’s real.  It IS what happened.  It is hard, and, YES, it does hurt!  Look at usLearn from us.  Go ahead, stare.  Do it.  Do it!  DO IT!

As much as I wanted to, I didn’t yell any of that.  In that moment, as my own thoughts filled with rage, Ronan stopped moving.  He stopped fighting.  He stood up.  He stood still.  He looked normal.  Relief fell over me.  Maybe we’d walk out as quietly as we walked in. 

Maybe not. 

We were at the doorway when Ronan got his second wind.  He managed to grab the doorjamb of the front door and held it tightly.  I couldn’t take another step until he let go.  Wielding random body parts, first an arm, then a leg while attempting to grab my hair, Ronan came at me.  He was done being patient, he was far from happy, and it was long past time for us to go. 

This was not easy.  And this should not be our normal.  But this sort of anxiety-filled moment is typical.  It is full of frustration, and it is the result of losing skills, skills that vanished years ago.  My son’s autism robbed him of those skills, of his independence and of his ability to speak.  His autism is anything but a gift.  He himself is a gift, but what came with his diagnosis is no cake walk.  And, moments like the one he was having that afternoon are not fair.

We were in the foyer away from everyone, but at that moment I wanted so badly for someone, all of them, to look.  I wanted to see their expression, to witness their horrified look and to watch them standing frozen staring in disbelief.  But everyone was enjoying each other’s typical company.  Distracted by happy children, typical activities and birthday fun, Ronan and his massive meltdown went unnoticed. I longed to be with those typical parents and to watch Ronan interact happily and peacefully like he’s done before.  But, mountains of frustration prevented us from engaging in anything typical.

I managed to get Ronan out the door, down the ice and snow-covered walkway, down our friends’ long and winding driveway between party-goers’ cars towards our car.  Ronan pitched a fit the entire way.  He refused to walk.  He refused to hold my hand.  He refused to listen to me and to reason.  The meltdown I was trying to avoid was now in public display mode and at maximum capacity.

 

It took ten minutes for us to go about 100 feet.  Despite the chilly temperature, from the time we left the house to the time I got Ronan in the car, I was a sweaty mess.  Using a calm voice I tried to get Ronan to get into the car by himself like he usually does.  He wouldn’t budge.  I couldn’t get him in the car, and I couldn’t get him safely into his car seat.  He lunged toward me, and he tried to scratch me.  Ronan was physically trying to send the message that he was upset and that this situation was an awful, terrible mess. 

It took another few minutes, but Ronan finally got into the car.  He refused to sit in his car seat though.  Since our friends live in our neighborhood, and only three streets away from our house, Ronan rode unbuckled.  That was obviously a mistake on my part, but desperate times…

On our short ride home Ronan took full advantage of being out of his car seat.  I could see him in the rearview mirror reaching slowly for me.  It felt almost like it was slow motion, but Ronan quickly grabbed a handful of my hair.  He pulled it.  Hard.  Then he twisted the handful of hair and grabbed for another.  I didn’t react but quietly put the car in Drive. 

Holding back tears, I turned us in the direction for home.  A darkened house that perfectly matched my mood welcomed us as we turned into the driveway.  Ronan looked at our house and released his hand from my hair once he saw that we were home.  My scalp was raw, and every one of my muscles ached.  

Getting us out of the car, Ronan carefully and quietly stepped out of the car.  I remained quiet and behind Ronan wiping tears as they cascaded down my cheeks.  Walking toward the door, Ronan attempted to open it.  He isn’t strong enough to turn this particular doorknob completely, so he stopped trying but kept his hand resting on the doorknob. 

Staring straight ahead waiting for me to let him in, I asked Ronan to look at me.  I wanted to scoop him up and hug him, but first I apologized to him for how the afternoon had turned out.  I also wanted to ask Ronan to apologize for pulling my hair. 

I stood next to him and said, “Ronan, you need to say sorry too.” 

Ronan, still staring straight ahead, signed ‘sorry’. 

I said, “Ronan.  Ronan, please look at Mommy, and say sorry.” 

Ronan doesn’t talk.  What few words he can sometimes say are garbled and incredibly hard to understand.  I wasn’t sure what to expect after the volatile situation we’d just had, but Ronan turned toward me.  He looked at me.  His brown eyes locked with mine.  Ronan again signed sorry.  He took a deep breath, and then he said, “Mommmmmm.” 

He stared at me a few seconds more.  His eyes now peaceful.  His body relaxed.  His arm now down by his side as he dropped his hand from the doorknob as I lifted mine toward it.  As quickly as the meltdown escalated, Ronan moved past the negative and was ready to start over.  I put one hand on Ronan’s shoulder and used my other to turn the doorknob.  Patting his back reassuringly, I opened the door for Ronan, said, “Let’s go inside, Buddy.”  Tears of frustration as well as relief cascaded down my cheeks.

Once we were inside, Ronan went about his business as if the last hour hadn’t happened.  He was in his comfort zone again.  He was safe.  Inside his own four walls where it’s not too loud, where there aren’t too many kids and where there’s not too much going on, Ronan was okay.  He signed ‘Wii bowling’ and asked for help to get his game started.  I said sure and got the Wii console set up.  Ronan finally got his turn. 

Home isn’t where I wanted to be that afternoon, but for Ronan, sometimes home is where I have to be.  Afternoons such as the one that we’d just had are a big reminder of that.  Those types of afternoons don’t happen all of the time.  But when they do happen, and when things go from typical to terribly wrong, it really, really hurts.  Sometimes it’s physical pain and other times it’s an emotional pain that runs deep.  I’ll fight through the physical pain, and I’ll hold back tears every single time so that Ronan and I can find a way to carry on. 

 Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Twyla

Cia - they are legally required to provide an appropriate education for your daughter, and they can't get out of this by saying "there's no room".

cia parker

I learned something interesting at one of our meetings in May. I asked if my daughter could be given appropriate work to do in the special ed room, work a para could explain but she would be able to do mostly independently. I was told that there were already ten students in the special ed class (both mental and physical disabilities like cerebral palsy), and there wasn't room for any more. There were about twelve students (grades 6,7,8) in the self-contained autism classroom, who apparently are mostly verbal Asperger's kids. The school has about 350 students. So almost 10% are in special ed. My daughter is low-verbal and does not benefit from the typical-class inclusion of the other students, who only come together in the autism classroom for social skills classes once a day. But because she is of normal intelligence, they will not permit her in the special ed classroom, where, admittedly, they say there is no room anyway. It simply does not compute that many autistic students like her have had the language center of their brains severely damaged. Neither flesh nor fowl, not MR and yet not as verbal as what they consider autistic students to be. My neighbor asked: "Have none of her teachers even ever TALKED to her?" But I think it's part of the whole conspiracy. Doctors can't recognize what's in front of their faces for fear of professional repercussions. None of the teachers, special ed teahcers, autism resource specialiests, and so on, can recognize what's in front of their faces, because the reason for this problem leads directly back to the cause of the brain damage, vaccines, which must be protected at all costs, even when the cost is the lives of millions of children.

cycle3man

I am the grandpa of a vaccine damaged beautiful grandson. My heart is torn!!! However, in it's torn state it goes out to my wonderful daughter and every one of you Moms and Dads out there with children that have been damaged by both the vaccines and our fouled unhealthy environment and food chain. You together with your children are the HEROS!!!!!!!!
I hope there is a day of reckoning for those responsible.

Benedetta

Ronan did okay for a little kid -- he signed -- politely and was ignored -- he went to watch his movie and it did not work.
He was probably excited about the party too, thought he was going to have a good time and it was frustrating as all get out.

Been there too Cathy -- I don't know who had the hardest time you or him. Some times I suspect we are too over protective -- that is a hard call though -- because some times you just know in your bones what is going to happen.

Twyla

Thank you for writing such a vivid description which I'm sure many can relate to, including me.

James

I have had these about every other day with my son for the last two weeks. They were a lot less frequent before. He has this way of grabbing the skin on my forearms as I try to restrain him and just pinching and twisting. Not fun. When we are not in the mist of such a disturbance, and I am able to be reflective, I am sad for him because he seems to be unhappy more of the time--disturbed is a better word. He is stimming an awful lot as well leading up to these events. Sometimes I feel envious of parents of normal children, sometimes I am angry at the unfairness of it, but mostly I am just sad that his condition means I cannot be part of any social circle which includes parents with normal children...

Roger Kulp

Episodes like this were a regular part of my life until I was almost out of my 40s.One reason I lived with my mother until she died.Only identifying and treating my CFD put a stop to the meltdowns,and all the other sunshine and rainbows associated with autism for me.My younger high functioning sister had less frequent meltdowns,that gradually went away in her late thirties.True high functioning autism can often mean there are a lot fewer meltdowns,but they do happen.I witnessed a few real epic meltdowns my sister had in her 20s and 30s.My meltdowns often deteriorated into head banging and breaking stuff.My sister would hurt animals as well.One day,when my sister was in her 20s,a dog who loved my sister very much,finally had enough of the hitting and kicking,and snapped at her.Then and there my sister took the dog to the pound to be put to sleep.Our family has been putting up with this stuff for over fifty years.The only difference now and in the past is there are more children and adults like this.That and thirty,forty,fifty years ago they were just hidden from society in homes and institutions,where they would be given all kinds of wonderful drugs if they had these meltdowns.

Michelle

Thank you for this. I'm really tired of reading about how wonderful autism is and how our kids are so special and how we should just embrace the diagnosis and "accept" them for who they are and not try to change them.

My son can't speak. He's five and he can't speak. He can barely sign. He can barely tap out requests on his iPad app. He's not potty-trained. He's still not sleeping through the night. He screams and screams and screams and we try everything to figure out what is wrong, but sometimes we never do.

I would give anything for him to be "normal." Not because we don't love him as he is, but because I don't want his life to be so hard. I love this kid so much. It breaks my heart when he is trying so hard to convey his thoughts and needs and is unable to.

Sometimes, I want to blow up at the people on Facebook and elsewhere who act as if their kid's brand of autism is the only one out there. Not every kid with autism is high-functioning. Not every kid with autism is going to graduate from high school. Not every kid with autism would have gone undiagnosed 20 or 30 years ago. Some of our kids are profoundly affected.

I accept my son completely. And I worry about him constantly. What will life be like when he's bigger and stronger than me and having meltdowns? What will happen when my husband and I pass away and his siblings need to help?

Thank you for your honesty about the "other side." I don't celebrate his diagnosis. We endure it. We love our son and we endure his autism.

Cat Jameson

Tara, I wrote this story after I tucked Ronan in that day. I wrote as much as I could and then walked away from it. Sort of like 'write an angry letter' toward the situation. When I discovered the file last week in my writing folder I broke down in tears as I read it. When I reread it to edit it, I broke down again. It hurts--the emotional pain and the physical reminders that parts of life are so more difficult than I ever imagined they'd be.

xo, Cat

cia parker

I am so sorry. This is completely unacceptable, and the complacent, spoon-fed masses better wake the hell up. My well-behaved, cooperative daughter was plunged into the abyss of middle school last year: the school "experts" insisted that since she has a normal IQ (possibly), she would do great in all typical classes, with tutoring as needed. I said she would not, but despite what everyone says, no one cares at all what the parent says. I called a special IEP in October to say that it was unbearable for her, way too much homework that there was no way on earth she could do even one line of independently, that she needed adapted work that she could understand and do independently, I offered resources, like the Jamestown line of textbooks written at many levels of cognitive abilities. But no, they brushed me off and did nothing, until she started having meltdowns in class every day in December. She tried, she liked it at first in September, but since NO attention was given to her needs, she just couldn't go on. For two months, in addition to the meltdowns in class, she started telling her autism teacher (who accompanied her to some of the typical classes) and me, many times a day, that she wanted to kill us. At an emergency IEP meeting in January, I had her come to start to advocate for herself, and she said it to me at least ten times, shocking everyone at the meeting. She was taken out of all but the typical Spanish class, that she did very well in: I tutored her, but she got As and Bs on tests and quizzes independently, because it was language from the ground up, rather than the equivalent of graduate seminars in English and the subjects. They put her in PLATO online core curriculum classes, described as "challenging" for typical middle-school students on the website. And no one noticed until May, when she failed all the tests in it, that she had understood absolutely nothing at all of the lessons which scrolled down before her. As far as public school was concerned, it was an absolutely wasted year from their stupidity, incompetence, and reality-blindness, except for Spanish and adapted P.E., in which her teacher said she was an absolutely model student. Once they released her from the hell of the barrage of noise, language, stimuli, incompehensible lectures and homework, and feeling bored, frustrated, and inferior for months (did they notice? did they care? not until the meltdowns!), she once again become her happy, cooperative normal self. At yet another IEP and special meeting in May, I learned that they insist that her language skills, both receptive and productive, are completely normal, and that her only problem is "social anxiety," which (always) impedes effective understanding and communication. I am so angry. We will continue this battle when school starts again, I just don't know who could help me and listen to me and her. It's their version of rainbows and unicorns. I am thrilled because, thanks to our having studied the constructions "there is/are"and "is there/are there?" in her Cambridge Connect book, she remembered it, and, for the first time in her life, months after having worked on it, she asked me earnestly several days into our vacation, "Are there enough clothes?" I am thrilled at her progress: the school personnel, including the absolutely clueless autism resource specialist, assume that she's capable of writing a three-page composition on what she did for her vacation (they asked her to do so last September). There are absolutely no words to express the depth of this tragedy which nearly everyone is actively enabling.

tara mcmillan

Are you crying tears ? I know I am ...reading this... it just isnt fair for Ronan. It isn't fair for any of our kids.

One day will be worth all the hell on earth our kids have to endure. Those responsible for this travesty will get their due.

That is the only thing that keeps me sane.

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