Deal With These Behaviors or Suffer the Consequences for a Lifetime

Self stimulatory behaviors, obsession and narrow interest are cornerstone behaviors of Nick's autism that began before his diagnosis. I hoped with intervention he would outgrow these,  still they are in full effect today. This behavior has been described in many words that mean the same thing for us, including; 

• Repetitive
• Repeating
• Rumination 
• Obsessing
• Scripting
• Perseveration 
• Over stimulation 
• Stemming
• Echolalic 
• Self Stimulatory Behavior 
• Limited/Narrow Interest

Over the years Nicks need to put his favorite topic's on auto repeat by any means possible (internally or externally) has been given lot's of names but it has never changed!  Nick is addicted to repetition. Anything Nick likes, he likes a lot. Anything he likes he wants to have repeated in shotgun style; rapid, bold with no holds barred. Nick will find any way to get a thing to repeat, from lists, to baby video's, to end credits, toy sounds, to words, one phrase in a song, to questions anything he can repeat.  Nick wants to live in a loop where he can hear or see the same thing over and over. He is an addict for repetition, he loves it and Nick could replay a 3 second piece of a song, a dinosaur roar, video clip, or 6 second movie segment back-to-back over and over for hours either in the real world or just in his head.

He gets so happy; he jumps up and down laughing hysterically as he spins and drools with joy!  I know to some of you this may sound cute and harmless yet it is anything but.  Sadly, this thing that Nick loves so much that makes him so happy is like a drug, when you're up it's great, but the crash is ugly. 

Nick repeats and in doing so he grows more and more excited with each spin around the loop. But unlike the rest of us he cannot regulate his body's response to the things he loves. Repeating gets him overstimulated, when he is overstimulated, he can't think of anything else but the thing that stimulates him, and he loses all impulse control. When he is asked to stop, he gets upset. When he gets upset, he doesn't hear what you say to him, he begins to tantrum and he cannot be redirected to anything positive. He often becomes aggressive and then he falls into intense sadness and crying as he crashes that can last up to 24 hours.

It's so sad that things he loves are bad for him, and that is why I call it his heroine! 

Sadly, the problem is not just limited to how it makes him feel. Having things repeat over and over and taking part in Nick's tantrums makes others feel anxious, angry, tortured, nervous, frustrated and ready to crawl out of their skins as they beg him to stop and then are forced to deal with the fallout. 

What I know for sure is that this aspect of Nick's autism will be with him for a lifetime, but the fallout for us has been minimized using these five strategies. For Nick it's all about;

1. Constantly working to expand his areas of interest. The more things he has to do, the fewer opportunities he has to focus on his obsession's. 

2. Restricting his access to ANYTHING that he can use to access his obsessions. In Nicks case no one is allowed to let Nick get on a computer, a cell phone, TV, or tablet unless we have agreed exactly how it is being used, and Nick is not controlling it. 

3. Finding if there is any formula that works where he can have any amount of his obsessions. In Nick's case Nick can earn 15 minutes, 1 day per week of free time on the computer. During this time, he can look up and repeat any of his obsessions. I have learned that is how much he can tolerate and still retain impulse control. A change as simple as letting him go for 20 minutes results in a lack of impulse control and the subsequence crash.

4. Making sure EVERYONE who is around Nick knows the rules and follows them, even when they think I'm wrong or being too hard on him. 

5. Introducing incompatible behaviors. When Nick wants to be in his head playing one of his favorite video loops, I have him do an activity where he cannot be in his head at the same time. For him coloring a picture, doing a puzzle or a word search work. He can’t do any of these and play a video because the two activates are incompatible.

5. Not letting anyone talk me out of what I know is best for Nick. For years I let "experts" convince me and sometimes shame me into letting Nick indulge in his obsessions.  And, in the end, Nick did not build an improved tolerance, or gain from the experience. Instead, I was always left to deal with the fallout when they moved on to another case, or headed home. I finally learned that no matter how hard others tried to convince me that a little heroine can't be that bad! 

What Wikipedia Can't Tell You about Autism and Graduation Ceremonies

I know I'm late to the graduation party, but I didn't want to miss sharing this. 

On graduation day I invited friends and family and therapists to come so we could all cheer and celebrate this momentous day we all worked so hard for.  Huddled together on the bleachers we were all excited screaming "Go Nick", clapping and cheering as he walked out to take his seat. We were just like all the other families celebrating each graduates success and the joy of knowing this was the beginning of what we all hoped would be an exciting chapter for our children, the dawn of a new day.

As the valedictorian talked about their future, what each student will do next, the contributions they will make to the world, and the thrill of the academic, personal and professional journey ahead, something snapped in me, and my excitement was gone. My stomach tightened as a wave of profound sadness, borderline nausea passed through me and I went from feeling like all the other parents to an actor in a play, a fraud an imposter pretending to be like the other parents, pretending to fit in because this sounded nothing like Nick’s future, nothing like our life.  I put my head down to cover my face and hide the tears flowing from my eyes. 

I stopped hearing or seeing the ceremony as my mind began racing with thoughts “What the hell! Am I crazy? What am I celebrating? Nick is walking but he’s not getting a diploma. He’s not like these other kids. What future, mall walker!!!? This is not the start of an exciting future for Nick we’re just getting closer and closer to the world where there is no place for him, a world where one day I won't be here to protect him!”  And all of the joy of the moment evaporates. I tell myself to snap out of it and I pick up my head and go back to watching the ceremony. I do the right thing, and I yelled in support as he walked across the stage.

Finally, the ceremony ends and we all rush down to the field.  I’ve put on my happy face, still unable to silence the thoughts in my head and the grief I'm feeling.   

Then, I see Nick who is exploding with joy and what looks like pride as he jumps and smiles and laughs clutching his certificate.  His joy is so big, so infectious my grief vanishes and I realize this is the point, this moment, these feelings right now and not what is next. It doesn’t matter if he isn’t like the other students, it doesn’t matter if his future won’t be like theirs, it would not be like theirs even if he was typical. It doesn't matter if he isn't holding a diploma or know what all of this means.  The truth is each student faces the unknown, just as much as Nick does, some will have a better future, so will not. But I do know what every parent wants most is for our child to be happy, and mine was probably the happiest one there!  

I watch everyone congratulate Nick, I see my beautiful happy boy and I am so relieved I didn’t let all the thoughts in my head, and my concerns for his future, rob me of the joy of the moment.  Note to self, the past is gone, the future is unknown, so remember mama to stay in the now, or risk missing something pretty damn amazing!

Single moms, working, parenting and special kids...where does that leave dating?

Single moms, working, parenting and special kids...where does that leave dating?
What women doesn't want to find the perfect guy, who will complete her family and make her happy? Well, I do and despite a failed marriage and a hectic life, the dream still lives inside. 

I guess that's why when a friend convinced me that given my busy schedule online dating was a great way to meet someone, I didn't say no. After lot's of prodding I finally agreed "What have I got to loose!" and I signed up. Much to my surprise it was fun doing the personality profile, focusing on myself and getting "Meet Mr.X" messages sent to my email for my approval. For weeks I just looked at the matches and it was good for my ego. I didn't feel like a mom, or a divorced mom, or a mom with two kids, or a mom with a special needs kid - or most of all a mom who really didn't have time in her life to be a great mom, the breadwinner and date!  I just felt like a girl, who wanted to meet a guy and that felt nice. About 1 month in I decided to take a leap and I began texting with someone, then we talked on the phone a few times and I agreed to meet  at a local tea spot. We had a 35 minute chat. A week or so later I was attending an event and I invited him to tag along, we hung out for a couple hours.

Then, he hit hyper relationship drive, which was like hitting a wall at 70 miles per hour, boom! To me it felt as if he was ready to go full speed and plan the wedding. Which was not what I wanted to do. I just wanted a little relationship to begin with. And now I wondered "What had I done?" I wanted it to slow down and maybe even stop all together. I don't know all the emotions that were driving me. Was it him or was it me? I wondered if I was just not interested in a nice guy, was I sabotaging a potential relationship with someone who was really interested in me, because I had become so used to relationships being a battle, and me having to struggle for the love and attention I deserved. I had no idea all I knew for sure was this didn't feel right to me.  So, I kindly thanked him and explained "Me tortoise, you hare and a backed away". Three days later we exchanged these messages:

Message # 1 from Him:

Donna,

Is this the end??????? I'm not sure what happened, or where I /we went wrong. I'd assumed a woman of your caliber and education would be a tad more considerate and understanding. Please understand this, you don't owe me anything whatsoever. I just thought you wouldn't "diss" me this way. After all, we didn't just happen to meet at the local 7/11. We purposely and specifically met via an online "dating" service. Which (call me crazy) generally means folks go there to meet new people with the goal of seeking potential "dates", etc. If you were not serious about dating, or even more importantly; not interested in me. Why did you bother? No disrespect intended, no one like wasting their time, nor spinning their wheels with someone who's indifferent. I'm flesh and blood, and I have feelings too!

All I was originally seeking from you Donna was some degree of clarity from your statements from our Thursday night phone conversation. From my end of the phone, all I heard was a series of thoughts and words strung together to form a somewhat incoherent statement. A "thought smorgasbord" if you will. You then went on to say that your dinner was in the oven. Then abruptly ended the conversation, with the proviso that you would call me back later that evening. So far, so good. However, as we know; that conversation has yet to take place. :-( Bob Dylan summed it up nicely, "...you don't need a weatherman to know which way the wind blows."

Unless I hear otherwise, I can assure you this will be the last time I'll reach out to you. :-( You have a multitude of very desirable traits. And yes, I will miss you greatly. However, (once again, no disrespect intended) communication (with me) was NOT your strong point. Most of our communications were text-based, which is OK for general contact. But hardly suitable for gaining knowledge/context/nuance about a person. And our phone conversations were very short, generally one sided, while you multi-tasked in the background. I understand you have a very busy life. Nonetheless, often times... I felt you were not totally listening to me. More times than not, I often wondered why you even bothered with the hassle of going on eHarmony.

You mentioned in your blogs, "...you are going to wake up one day and be 60 and all alone". If you want someone in your life, you're going to have to let down your guard... a little, and let them in! Your have a very complicated life. But not an impossible one. As you well know, anything is possible... if you really want it. In my case, I may not be the "type" of man you generally date. Which as far as I'm concerned, should be a good thing. :-) Besides, if they were "all that", our paths would perhaps never crossed! My "ex" the, "shrink" use to tell me that a sure sign of insanity was doing the same exact thing over and over again. Expecting a different outcome. What I may lack in material goods, etc. I more than make it up in those sought after, "intangibility assets", such as warmth, heart, soul, friendship, emotional support, companionship, honesty, great kisser+, devotion, compassion, understanding, patience, teamwork, and yes... unconditional love. When was the last time you really thought a man was really just into YOU? When was the last time you were with a man who you knew, "had your back"???

Anywho, it was a distinct and total pleasure meeting you. You are an awesome woman, Ms Ross-Jones! I'm so glad I met you.

Good luck in whatever paths your life takes you. I won't soon forget you.


p.s. - I really wanted to meet both Nicky & Evyn.

Message # 2 My Response

Wow, Ouch and Okay. When I read this last night I was taken aback and my immediate thought was to respond line by line. I opted not to, because I was feeling too defensive and no matter how I felt in the moment, I always trust that all things happy for a reason. This morning I woke with two thoughts;

I am sorry for any angst I have caused you, it was never my intention. I'm just still finding my way.

In response to your question "Is this the end?" Yes, it is.

Thank you for being honest, and again my apologies for any upset I caused you. Take care. I wish you every happiness.

Donna


Message #3 Response From Him
I was hoping this would be an opening for additional dialog. Once again I misread the situation.


Response #4  Response from Him
One More Question: Would you possibility reconsider additional contact with me? I've been rather stressed here at work, and I think it reflected in my email from last night.

If indeed we're to never speak again. I would like to attempt to end things on a more positive note.

If not, I totally understand.
---------------------------

That was the end of the messages, and online dating but this was still a great lesson for me. I learned maybe not the right time, maybe not the right guy. But, for sure I was not ready to spread my attention beyond my kids, family and work and in the end I was cool with that.  And I am, no matter how long it takes.

Please take 5 Minutes to Improve the Lives of Children with Autism - and the families who love them!

THURSDAY the Senate and Assembly are finishing up final negotiations on the Budget and we have the first opportunity in years to possibly restore camping and social recreation, and lift the cap on respite.... but only if we call immediately!

Nick at Camp, such an important experience! 

For those of you who are not aware, the Regional Center used to provide funding so our children, just like typical children, could enjoy social recreational activities, like summer camp!.  These supports were pulled from the budget and for the first time in at least 10 years we have a shot at getting them back. Will you help?

Everybody can contact the Governor and the Department of Finance (the state's accountants), and if you are also represented by a member of the Conference Committee, call them too. This is moving fast, and will be done by Thursday, so CALL TODAY!

(1) Click here and find your Senator and Assemblymember.
(2) If they are on this list, call their office and say "I am a constituent, and I support a Budget restoring camp and social recreation, and lifting the cap on respite services, to help people with developmental disabilities."
(3) Contact the Governor's office and also click here to email his representatives in the Department of Finance, and ask for this restoration!

(4) Everybody can also call two key leaders in the Legislature (Senate President Kevin de León, 916-651-4024, and Assembly Speaker Anthony Rendon, 916-319-2063) to say this matters to you! 

Why do we need these services back? Respite reduces the stress experienced by families and oftentimes allows a trusted relative or friend to provide the service. Some families prefer camp or social recreation services because of the added benefit of group social opportunities for the individual while the family is taking a break from their care. For some, a blending of these services meets their needs best. In 2009, many services, including these, were cut to save money. In a recent Budget hearing, Democrats and Republicans both said they understand just how valuable these services are to our community. They are interested in restoring them. But we need to put the pressure on to make sure this happens! And we have to act fast, because our chance ends Thursday, when the hearings are finished. Everybody must remind the Governor, his accountants, Senate President Kevin de León, and Assembly Speaker Anthony Rendon, that bringing this back helps families! Contacts everyone can make! Governor Brown (email online or 916-445-2841) The Department of Finance (email kris.cook@dof.ca.gov) Senate President Kevin de León (916-651-4024) Assembly Speaker Anthony Rendon (916-319-2063) Key Legislators (if you are a constituent) Senator Holly Mitchell (Los Angeles, 916-651-4030) Senator Ricardo Lara (South Central/Harbor, 916-651-4033) Senator Richard Roth (Riverside, 916-651-4031) Senator Jim Nielsen (Chico/Roseville, 916-651-4004) Senator John Moorlach (Costa Mesa/Orange, 916-651-4037) Assembly Member Philip Ting (West San Francisco, 916-319-2019) Assembly Member Phillip Chen (Brea/Anaheim, 916-319-2055) Assembly Member Kevin McCarty (Sacramento, 916-319-2007) Assembly Member Jay Obernolte (San Bernardino/Barstow, 916-319-2033) Assembly Member Shirley Weber (San Diego, 916-319-2079) Assembly Member Joaquin Arambula (Coalinga/Fresno, 916-319-2031)

You can make a difference! Raise your voice to support bringing back these important services today. (1) Contact the Governor, and also click here to email his representative in the Department of Finance. (2) Tell legislative leaders Senate President Pro Tem Kevin de León (916-651-4024) and Assembly Speaker Anthony Rendon (916-319-2063) that this matters! (3) Find out who your Senator and Assemblymember are. If they are on the list above, call them! (4) When you contact any of these officials, say who you are, and that "I support restoring social recreation and camp, and lifting the cap on respite, to help people with developmental disabilities."

10 Things about Special Day Class (SDC) Schools Don't Want You To Ask

The first special day class I visited for Nick confirmed every negative stereotype I had in my brain convincing me that Nick should ever be placed in one.

Over the years I've come to question if any child with autism could reach their potential in an SDC setting, yet I know there are little or no alternatives for many of our kids. What I know now is, it is possible when viewed as something we shop for, vs something we just accept or take for granted.

The big idea here is too many SDC's and the teachers who run them are still operating from the perspective that our children will never developmentally grow beyond elementary school.  As a result, they set the bar low and our children suffer, never getting the opportunity to reach their full potential.
Sadly many SDC teachers are still treating students, even in high school, like babies, their "special children" unaware their perceived limitations of each student are part of the problem. For years I thought this would change, but when Nick came home from summer school last week with a "Certificate of Excellence" in an owl cut out aimed at K - 2, my first reaction was "Really....why the heck are you treating my 18-year-old like a child?"  Another reminder change is slow, and we have to teach teachers too!

Ten things you need to consider when placing your child in an SDC? 

1. Does the room feel age appropriate? If the classroom, is not in elementary school, but it looks like one the setting screams, we think your child will always be a baby! 

2. Do conversations between students, teachers, and aids sound like they are talking with a kindergartner?  Individuals with developmental disabilities should be spoken to in a normal fashion, and not talked down to, no matter their age. 

3. Is the class engaged in age-appropriate activities?  I don't mean activities should not be modified for each student. What I mean is does your 17-year-old come home from a field trip with a paper hat on his head?! 

4. Do class activities reinforce negative stereotypes of special needs children? Are they asked to line up and walk single file to the cafeteria in middle school...when the other students are not?  If you're not sure, just channel your inner 10 to 18 year old, and consider the things SDC students did that you laughed at. 

5. When you go in the room, does the teacher sound like a teacher or a parent? Teachers should always sound like instructors, leaders, a person of authority. Teachers who coddle our children often fail to see their potential and instill confidence to achieve more. Pity only stunts their growth. 

6. Are the SDC students being isolated from the typical students during lunch, recess, and other nonacademic activities? When SDC students are not included as much as possible in the general education population during lunch, recess, and other nonacademic activities everyone loses. The general population is denied the opportunity to learn about diverse populations, which will be critical in a world where 1 in every 54 individuals has ASD. In turn, our students are not given the opportunity to mirror and learn from the general ed population.

7. Are you welcome to visit the class at any time? Be skeptical of any classroom where parents are not welcome. No matter what anyone tells you about a classroom the only way to really know how it is run is to see it in action. Yes, you have to follow the school rules, which vary from campus to campus, but you are legally entitled to observe during school hours. 

8. Does the SDC have a process for generalizing the skills learned in the classroom? ASD students memorize information, which is often not retained over time when they are not taught to apply the information in their day to day lives. No matter how many academics are taught, if the SDC cannot demonstrate a plan for each student to generalize skills into the world outside of school, your child may graduate school a social and functional illiterate filled with information that cannot be used to achieve or further their independence. 

9. Does the SDC teacher have experience working with the unique needs of children with autism?  Too many educators are still unaware of the unique and often complex needs of children with autism.  Don't let the small classroom fool you into believing each child is being well serviced. Children with autism, down syndrome, epilepsy, and an array of other disabilities all have unique needs and learning abilities and styles. there is no such thing as a one size fits all when it comes to teaching. 

10. Is your child showing measurable growth in his SDC?  The school expectations for our typical children are pretty universal, and it's easy to let society, our school system, and educators pull our children along the milestones of an "educational" path. On the other hand, due to their individual needs, there is not a universal standard of milestones for special needs chidren. As a result, it's far more difficult to measure our children's progress and map where they are in the process. A great teacher has a plan and understands the goal is independence.  A qualified teacher will help you understand your child's academic/school goals and can tell you how they apply to their eventual independence.

If any of these things are happening in your child's SDC, don't give up, talk. I've found that most teachers want to do a good job, and many have just never been educated about our children. And if you find the teacher won't listen, or can't hear you, go to the next person in charge and express your desire  is not to be disruptive, you just want to help to create a better setting for you child and the other students.  

The Pain I Feel Now, Is Proof of How Much Love We Shared; A Daughters Journey

I've passed through the "Is this real" phase, and the frantic, intense phase of making sure her memorial was one she would show up for. Now heading out of the "Did I miss anything phase, was there anything else I should have done?", and seems in the quiet I have now reconnected to my heart - which in some ways was on pause  because the grief was too much - and I'm in the "Oh my gosh I won't ever see or hear her again phase" and I just want to roll up in ball as I try to come to terms with that reality.  I think this is the hardest".

I was so blessed to have her, and that emotion is not lost on me. But my Mom, was the only constant in my entire life. She was the only one who I knew would always be there. The one who loved me no matter what I did. The one who said she was proud of me, and the one who would just silently take my hand, hold it, and just say "Love you". This is a loss like no other. There is not another person in this world who can be your mom, and I had a great one for me.  She was a very special gift, and I guess I've known that always.

Autism; Maybe the Journey is the Cure

Today Nick did something so simple, but miraculous in our ASD world. He took my breath away and got me thinking. Instead of viewing the cure as a destination, today I'm thinking of autism as a journey where every good day, every success IS the MIRACLE and the CURE. And, if one day one of those miracles comes in the form magic bullet...bring it on!  But today "Cure" means me knowing that when every miracle is chained together we will be where we are supposed to be, watching Nick become the best man he can be!



It's the little things we do day in and day out - almost like robots to teach our kids - which we hope will stick. We push, push and push believing in what could be, and out of no where, it all pays off when you get moments like the one I had today that took my breath away!!!

Nick takes the bus to school every morning. As part of our daily routine I have to get Nick's attention, tell him the bus is here, corral him, then walk him to the door, where I begin prompting him "Stop repeating, calm body, go down the stairs, yes your can earn free-time, get on the bus".

Today, I was standing in the kitchen and I said what I always say "Nick the bus is here, grab your lunch and go get on the bus".  And  that was it!!!  He grabbed his lunch, went out the door and got on the the bus....on this day, for the first time ever that was all it took.  I was just standing there and it hit me,, I didn't do anything! It was all Nick, and I was like "WOW", like really wow, like what just happened, WOW.

Then it got me thinking I needed to change my perspective when it comes to a cure for Autism. Maybe the cure isn't ever going to come in the form of immediate gratification, maybe there's no "Ta Da You're Cured". Maybe this is it.  Maybe the cure happens over the course of a lifetime, maybe it's just all the progress chained together that creates the best human our kids can be.

Today it's all about seeing the miracles :)

Mean People Suck - Another Community Encounter

Today is one of those days when I am glad Nick's autism impacts him in ways that he doesn't get his feeling hurt by mean strangers, unlike me! 

Nick was in the lobby of the movie theatre hanging by the arcade games, when a mom felt it necessary to suggest that Nick leave, and perhaps the theatre just wasnt' the place for him. 

Why you ask?  Because Nick said hello to her 6 year old daughter!! That's it, nothing else.  She was over heard asking her husband to talk to us because she didn't like the way Nick looked at her daugher.  Hey I get it, you don't expect a 17 year old to just say hello to your 6 year old - in a peer to peer kinda way. I get that for a moment you might not be paying attention and as a protective parent you are thrown off, for an minute. What I don't get is the mean way some people response given the realties of the situation.

Reality Number One: It only takes a few minutes of watching Nick to know that he has challenges.  

Reality Number Two:  For some people contact with a person with disabilities brings up empathy for others hate.

Reality Number ThreeIt's hard to send your child out into the world knowing the number of mean people he will encounter. 

Reality Number Four:  We have been dealing ignorance and mean spirited people since Nick was a child. Yes, it's getting better because more people today understand, but we have a long way to go.

Sad.

Being Invisible is Deadly; 19 Year Old with Autism Left on School Bus Dies.

“I feel like, we are nothing," she said. “They killed my son. Technically, they killed my son.”  Eun Ha Lee

It’s taken me days to respond to this horrifying event, because every time I think about it, I hear his mother’s words “I feel like, we are nothing," “They killed my son. Technically, they killed my son.”

The reminder of how vulnerable our kids are, and how easy it is to neglect them and how fatal the consequences can be, was just too much for me to take in.  When Lee’s mom through her tears said "We live in a tomb now." I felt her grief and all I could think was by the grace of God go I.  

Reading he was probably just following directions drilled into him over the years "Wait until someone comes to get you" hit too close to home because my son has been "trained" in the same way. Training that is good and often all we can offer, yet in this case may have been a factor in this young man losing his life, left me feeling vunerable in a way I never had before.

Again, families I say” be afraid, be very afraid”. Not because we want to live paranoid, but because the fact is our children face all the dangers any child faces in the world nd more. Dangers from all angles. Last week Nick started eating raw bacon! Raw Bacon and his aid didn't notice. Until that moment I didn't realize the degree of Nick's lack of food safety, which could have dire consequences. 

Our schools, systems of care and communities alike are all working to include the growing autism population and the truth is the process is not perfect, it is flawed and full of gaps, and who knows how long it will take to build infrastructures that support this population, if ever. 

As parents and caregivers we know the dangers don’t stop as our children mature, but persist keeping them are risk throughout their lives. So it’s on us to make this a safer world for our kids. I’m thinking the more I do know the better it will be when I am not here to watch over him. Don’t get me wrong, I know there is no way we can ever be sure our children are safe, typical or special needs. We can’t guarantee anyone’s safety, that’s in the hands of a higher power and it is a concern all families and caregivers share. The only thing we can do is take every precaution to keep them safe. We can learn from the tragic death of Hun-Joon Lee and double check all our personal protocols and the protocols of the people who serve and support our children. This way if any of us are met with a tragedy of this magnitude, and the fact is some of us will be, we will know we did the best we could and we will not add the weight of regret to our already burdened shoulders.

My prayers go out to this family. 

Donna 

Special Needs Student Found Dead on School Bus May ...

www.nbclosangeles.com/.../Special-Needs-Student-Found-Dead-o...

Autism Moms Have Stress Similar To Combat Soldiers

As a mom who was advised to that I was suffering from PTSD after Nick's diagnosis and my divorce ...all I can say is stress is real for all of us, and I'm sad our families have one more box to check. :(   

Donna

_______________

Autism Moms Have Stress Similar To Combat Soldiers

By MICHELLE DIAMENT

November 10, 2009

Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.

Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.

What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.

Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.

“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”

In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.

Can you fail at Spiritual Awakening? I did :(

I thought I was pretty darn "awakened" but if I go with this list, not so much :(  I agree that there's an A out there with my name on it, but it stands for Autism. Reading this list I was struck by autism's impact in my world, and through my autism life lens here's my response to each item question.

1. An increased tendency to let things happen rather than make them happen.
Grade: F
I understand that in reality I control very little, and what little I control is me. However in my "A" world I have the opposite I have increased tendency to make things happen. I have to make sure my kids are okay. I have to make sure they are making progress. I have to keep the house clean, the frig full. If I don't make things happen who will?

2. Frequent Attacks of smiling.
Grade B
I do this!! Living with Autism can help you appreciate all the things that are going right. My kids make me smile. My family makes me smile. Our dogs make me smile. The "Tribe" that help raise my kids make me smile. Having a home makes me smile. Yummy food and wine makes me smile. Working legs and hands and arms make me smile.Nature makes me smile. Music makes me smile. A job well done makes me smile. In general life makes me smile.  In this case "B" stands for I could smile more :)

3. Feelings of being connected with others and nature.
Grade A
I'm connect to everything and I get it. My ex husband used to call me an open wound, because I feel everything around me. I call that compassion and empathy, things we need in this world.

4 Frequent overwhelming episodes of appreciation.
Grade A
Strongest is when both of my kids are right next to me and they are happy and safe I feel so grateful. I get this overwhelming feeling of appreciation when I realize how blessed we are to have each other, how blessed I am to be able to take care of my family and how many things that could have turned out bad, and they didn't.

5. A tendency to think and act spontaneously rather than from fears based on past experiences.
Grade C
Ha! The only spontaneous reaction I can count on, is how spontaneously I can react to Nick's spontaneous actions, and I am good at that.

6. An unmistakable ability to enjoy each moment.
Grade B
I'm a pretty happy person and autism has made that both easier and harder at the same time.

7. A loss of ability to worry.
Grade C
Autism means not outgrowing the worries you have with children, only adding the worries you have when your children become adults. So, no I have not lost the ability to worry, but I have chosen to worry less! I'm not consumed by worry, but I am concerned. I am concerned if my kids are getting all they need, I am concerned that I am make enough money to care for them now, I'm concerned about having enough money for Nick to have some sort of security as an adult and the money to pay for his lifelong care. I am concerned every time my children leave the house, will they be okay.

8.  A loss in an interest in conflict.
Grade A
Conflict is a part of life, but if this question means loss of interest in creating or not stepping up to extinguish conflict swiftly, absolutely. I just no time for it!

9. A loss of interest in interpreting the actions of others.
Grade B
I'm still asking "What were they thinking?", "Why did they do that?" mostly as it relates to my children, and especially as it relates to people who interact in Nick's world. Oh, and don't let me get started on people who I think are mean to special needs kiddo's. But just like conflict I have less time for the luxury of pondering things I can't control and that have nothing to do with me.

10.  A loss in interest in judging others.
Grade B
Oh my gosh, I don't have a conscious interest, but I still catch myself doing it! I don't know when I realized that I was judging folks up one side and down the other. But I'm sure it happened about the same time I saw how people judged Nicholas. Nothing like watching people judge those you love, and feeling that sting of hurt to wake you up to your own behavior.

11. A loss of interest in judging Self
Grade C
There's nothing like raising a kiddo with an illness that has no known cause or cure to bring out the blame in a parent. I'm always wondering if I'm doing enough, if I have done enough. I still struggle with being "Good Enough" even though I know my definition of good enough is doing all things, everything perfect which is both crazy and impossible.

12. Gaining the ability to love without expecting anything.
Grade A
My love for my children is unconditional.

A Gift of Calm - enjoy!

I don't know about any of you, but in my world if I didn't make it my business to find joy every day I'd go crazy. Not tiny crazy, we’re talking yelling, manic or comatose in a corner curled up in a fetal position type crazy. Hence, I'm highly motivated to find joy! To make sure I do, I keep my bar low. I start by being thankful I woke up on the right side of the dirt! Then I look for joy in the things that are always here, things I can always rely on. For me it's the sky. I take pictures from planes, on hikes, laying down flat on my back looking up.  I love the sky, I love how it’s never the same and it's always there for me!  

I took these pictures on my cell phone while hiking in a nearby canyon, with Nick. I use them as screen savers and they calm me. Maybe they will do the same for you. Feel free to snatch one or all if you're so inclined.

Telling Single Moms They Are Fathers Too Doesn't Help Our Daughters or the Absent Dad Crisis!

I am a mom who does all the parenting. I am not alone I am just like 86% of the divorced parents raising children with ASD.  Yes, my friends and others say “Happy Father’s Day, Mom!”  For years I thought wow it’s true, I’m both parents so this is my day too.  Then I thought maybe we should just have a parent’s day.  Why not have a day dedicated to celebrating anyone who parents and traditional roles be damned!  If you parent, you get recognized. I mean, isn't it the constant delivery of love, guidance and support we give our kids that’s being celebrated and not so much who gave it?  I used to think so, but not anymore.

This year, I changed her mind. Although a well intentioned gesture, it hit me that telling single moms we are fathers too does not help the crisis so many of us single moms are no left in, and it doesn't encourage men to step in and step up. As much as this hardworking mother found it had to accept at first, I don't think Father’s Day is not for single mothers. This day is designed for the men who embrace their roles as dads. Dads who stay, dads who make a difference need to be celebrated, and if there are fewer men showing up to be counted, so be it.  The truth is there are great men out there, who are dedicated dads or granddads and our children need to know they exist. As a mom, I owe it to my son and especially my daughter to teach her, that no matter her father’s choices, there are good men in the world instead of me unintentionally teaching her to expect so little.  

So next year - instead of minimizing the holiday, crying about my absent dad , and my children’s absent dad – I’m going to find a place where my children can watch a dedicated dad in action.  If I can’t find a family open to sharing their dad on this special day I’ll find a strong man who is loving and able to show my kids that men can be wonderful.  That's the reality I want my children to believe in. :) 

Education: Solution for Kids with C's, D's and F's

Business Insider Video

Arianna Huffington is a strong advocate of 

a good night's sleep.

Sleep has always been a challenge for Nick. So much 

so that we have a routine, which includes this 15 year 

old going to bed by 8:30. This is to insure he gets 

enough sleep, putting him in a category where he wins

over most teens. Wish I could have gotten my daughter
to sleep as much.  Oh, well don't expect sleep will 

improve his grades but it sure improves his behavior!  

And there's an added benefit, when he sleeps I sleep 

and I'm positive it improves my behavior! I remember
reading studies that determined the school schedules we

currently have for teens are unhealthy and set them up 

to fail, and this story seems to support that theory. 

Healthy sleeping habits are linked to better grades.

Turns out that all-nighter probably isn't worth your time. The cost of sleep deprivation is greater than the knowledge you might gain from studying.

Research shows that the less high school students sleep, the worse they tend to perform in class and on assessments. According to one study, students who receive C's, D's, and F's in school get on average 25 fewer minutes of sleep than A- and B-students.