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Tuesday, April 30, 2013

How My Kids Have Helped Me Grow -Guest Post by Cindy


 Editorial Note: As we wrap up Autism Awareness Month, I bring to you our final Guest Post for the month of April...
Cindy is one of our Confessions, autism mama's.  She is the mother of two amazing boys one of whom is confirmed to be on the spectrum and has an interestingly formed left hand, and one who might have ADHD.  Having children teaches us who we really are.  Having children with special needs teaches us love and compassion beyond any other experience in life.  Here is the story of how Cindy's special boys have changed her forever.
My oldest, M is my Aspie with a 'different' hand. The very first thing I learned from him is that people are not their disability.  Different is not always bad- in fact it is often amazing! This boy was brought up to believe that his left hand was one of many outward signs that God made him special- just like I have dark curly hair and hazel eyes. He internalized it so much that when we were last at the hand Dr he told the Dr,"no! That is a way God made me special!" without looking up from the DS screen! I almost started laughing then and there! 
My boys both had physical challenges growing up, they had many therapies a week- and through that I learned that I grasp concepts of OT and PT very well. I guess I am a good student.   
Motherhood has shown me that I am capable of loving more than I ever thought possible-2 babies are more love! 
Being their mom has shown me that I can find a creative solution to just about any situation! I am creative! (I used to draw, paint and sculpt. They all stopped when I learned to crochet and cross stitch.)  I have always encouraged my kids to be creative and try new art techniques- even finger painting with your knees! They brought my creativity back into my life. 
My little guy, A, has taught me so much about forgiveness and generosity. He will forgive you if you apologize. If you don't you are out of luck. And if you asked for it nicely, he would even share a favorite book with you! They had a fundraiser for the earthquake victims in Haiti a while back- and A was so excited about giving his dollar so he could wear a hat in school that he couldn't stop grinning! A cheerful giver lives here! He taught me that even things I need to give to, there is a joy in having enough to give 
M has taught me an amazing amount about finding my strengths. He is amazing at science, computers and ART- takes after his Mom I guess. His life has challenged me to re-examine who I am and where my strengths lie.
One of  my creative outlets for a while was in making the boys birthday cakes. One looked like Blue's house from Blue's Clues, Elmo, Thomas the Tank Engine, Power Ranger, Death Star and I am sure I missed one or 2. 
I have learned that I am a very creative person and that when my creative outlet is not available, I get downright irritable!
ADHD means: playing video games and having a coherent conversation actually can happen! 
Hypersensitive hearing is great for correcting people on the phone. It is also excellent in knowing who just pulled into the driveway or locating a cat 
I learned how to love by watching both of my boys with our cat, Yoda, and with each other. They both want to have the cats attention. But M wants to give the fur baby a full body hug and Yoda is not inclined to accept that as a hug. A wants to pet Yoda. And Yoda loves them both. 
Cindy's Boys
My Boys bicker- they are preteen and teenaged- but they always look out for each other when the other one is upset. They check in with each other when they get home from school, and before bed. Just a ,"Hi Bro" but it is very meaningful. 
I have learned that it does not all have to be perfect! And that I will never be this elusive perfect person no matter what. 
I learned that the schedules I made for them as small children have prepared them for adulthood. We do not have too many rush around mornings- especially my Aspie! He turned 15 last year and he just started being responsible.
I have leaned that I can survive on 6 hours sleep or less! Don't recommend it but I have achieved much in that state.now understand the term 'silence is golden!' A is a little chatterbox so when he quiets down I am relieved.
Special is the right word to describe my boys ...courageous, happy, and handsome. They have brought me back to life and they are my real life heroes!

May blessings follow you wherever you go!

Friday, April 26, 2013

Aspergers and Team Sports -Guest Post by Molly


Guest Post~

I am excited to bring you today's post, written by Molly, one of our Confessions autism mamas.  She is the mother to a 4th grade boy with Aspergers.  He was diagnosed near the end of 2nd grade.  This is their story of learning to play team sports.


Where we live there are many sports opportunities and we have tried many of them.  You don't know if you're going to like it if you don't give it a try, right?  Most seasons are just a few weeks long for the young ones so you haven't lost much if you don't enjoy the sport you picked.  One of the first things we tried was soccer.  For the preschoolers it is parent/child together skill building with a few scrimmages.  This went OK for us as all the preschoolers were just as clueless and uncoordinated. 

A couple years later we got to team soccer where each week we had a practice and a game.  He wanted to go to soccer each week, but wasn't really "into it."  Practices were fine because there were many adults working in small groups with the kids.  There was always someone available to give a reminder or take the time to practice a skill with the kids. So many of the kids were simply not that   good at the sport yet either.     

At the games my son would often be unsure where he was supposed to go next. He would look to the coaches for suggestions.   Looking back he responded better when people would show him rather than give verbal instruction.  He would play his part of a quarter a couple of times and then be "just done" with the game for the day.   He was assessed and diagnosed just after the soccer season ended that year.  

After diagnosis, of course I did alot of  research.  One thing I learned was that kids with Aspergers just don't play team sports well.  That was fine for other kids, but mine wanted to play team sports.  I was determined to find a way to make this successful for him.   

The following year he decided to try basketball. Unfortunately basketball is a fast-paced game and my son is a slow processor.    Most boys from our school played in a different league; we didn't know many families on this team and they didn't know us.  I went to the coaches before the season began to ask how we could work together to help my son play basketball.  Imagine my surprise & delight to find out that one coach was a SpEd Phy Ed teacher and the other was an Autism Specialist!  Together we made accomodations to the game that both allowed my son to be successful and allowed the rest of the  boys to have a good season.  

Books
We went to the library to find books about basketball.  When we got to practice, my son had an idea about the game and the vocabulary of the game.  

Simplify Positions
The league encouraged every kid to try every position.  This was simply too much processing for my son.   We settled on teaching him just 1-2 positions to play for each game.   He knew he could expect to be in one spot when the team was on offense and another spot when on defense.    This is also realistic of team sports as kids get older - players are often guards or forwards but not both. 

Adapting Plays
Our coaches were teaching the boys to run plays in their games.  They made sure that my son's role in each play was about the same.   Not very effective at outsmarting the opposing team, but it helped my son successfully execute his part in the play.    

Breaks
This league was a no substitution league - the purpose was for every player to get an equal amount of playing time.   Each player was to play a full quarter at a time - way too much for my son.   He would play a few minutes at a time before he needed a break.   The coaches & I learned to read the signs that a break was needed.  Everyone wanted to give him as much playing time as he could handle.  He would start the quarter, play a few minutes, take a break, then finish the quarter.  Before each game we would talk to the officials to explain the situation.   They were always flexible and allowed us to make these substitutions.  

Visual Cues
One thing we know about kids with Aspergers is that visual cues are a huge help.  But how to make visual cues for basketball?   The coaches, my son & I worked together to create hand gestures to signal actions.  We also brought along a small white board to write or draw cues for the game.   There was a spot on the court that looked like  a block.   If my son was to go to that spot, we would pat our heads - block heads.   When he was to go to the "elbow" on the court we would touch our elbows.   When calling plays we would write a symbol for the play on the white board and hold it up.    When the messages were received my son would flash a thumb up.   

We also used hand gestures to gauge his need for a break.   He could flash us a thumb up, down or in the middle to let us know how soon he would need a break.   Both the coaches and officials had a clear-cut way to know when a substitution would be needed. 

Teammates
We couldn't have asked for a better team.  The boys learned to be tolerant and helpful to my sons struggles.   The parents were supportive of the accommodations made.   We never did a big lesson in Autism awareness, but let the boys know a bit about why we were having my son do certain things in practices or games.   Of course the boys knew my son was different.  

Near the end of the season things began to "click" for my son.  During one game my son knew exactly what to do.  He went to his spot and got ready for someone to pass the ball to him.  The ball came his way.  He turned, dribbled and took a shot!     I was stunned to look over in the stands to find every parent on our team cheering for my son.  Some were so proud of him that they had tears in their eyes.  The game was delayed a few seconds while his teammates congratulated him.   

We finished out the season feeling successful at team sports, proving to ourselves that kids with Aspergers CAN do anything with the right support. 

Wednesday, April 24, 2013

My Aspergers Story -Guest Post by Paul


Editorial Note: Today's Guest Post is brought to you by Paul, another member of my "Confessions Facebook Community" . Paul and I have never met personally, but I can tell you that he is a gentle spirit and an essential, positive part of our supportive community. He offers us insight as someone who is on the spectrum himself, as well as being a married father of two children with Aspergers, a business owner and homeschool teacher for his son. You will be touched and amazed by his story. Without further adieu...
~~~~~~~~

My Aspergers story actually started back in 1971, although I wasn’t fully aware of it for most of the last 42 years.  I was one of those undiagnosed kids with whom autism rode shotgun as a silent partner throughout most of our lives, undetected by most of society and not fully realized until well into adulthood.  Had it not been for Aspergers beginning to show itself in the lives of my own kids approximately 7 years ago, I might have gone my entire life without ever knowing what Aspergers was at all.

As a child growing up undiagnosed in the 70’s and 80’s, without the benefits of early diagnosis, IEP accommodations, behavioral therapies, or the blooming awareness we enjoy today, life wasn’t always a perfect picture.  In fact, it got pretty ugly sometimes.  What I’m sure I looked like from the outside was a very socially awkward teenager with no ability to self-regulate, an explosive temper, poor executive function skills and no filter to speak of whatsoever.  What few self-taught coping skills I had seemed to center mostly around imitating the behaviors of others, and unfortunately those ‘others’ were mostly the types of people who should never be imitated at all.  I often found myself on the wrong side of those who loved me and seemed to have a knack for hurting them more than anyone else.  

I also had a way of finding myself frequently engaged with law enforcement as well, and had been arrested at least a half-dozen times by the time I was 19.  To say the least, I had some behavior challenges. Most of the years between being a teenager and young adult, when most kids are applying for college and planning for their future, I had managed to work my way into a solid 5 year federal prison sentence at a US penitentiary in southern California.  (Note: This part of my life is really a whole ‘nother blog...much too long to get into here...but if you’re a parent raising kiddos you think are maybe on a similar track...feel free to contact me anytime!  I’ve got a few good insights and am always willing to talk about it!) : )

More importantly than any of that though, as I grew into a young man with what was yet undiagnosed Aspergers, I was able to overcome those challenges and turn it all around for good.  The years between 22 and 26 were ones of tremendous change and growth for me because of some unlikely individuals that really reached outside their comfort zones and invested heavily into my life.  I didn’t deserve this help, I didn't ask for it, but they didn’t let any of that stop them anyway, and their actions became a huge catalyst for change.  I walked out of prison almost 15 years ago to the day - April 29, 1997 - and I have never looked back.  

In the years that followed I was able to get married, start a family, have two beautiful kiddos, own my own business and enjoy a successful career in landscape architecture and project management.  My kiddos, both with Aspergers, are now 10 and 11 years old.  They are the best things about me, and the reasons behind everything I do. The most recently written chapters in my life have seen me shift careers into working for a local area non-profit organization that exists solely to help special needs children and their families, take up advocating for autism services and education, and also beginning to homeschooling my own son.

Paul and his Beautiful Family
It’s easy, knowing what I do now, to look back and see the fingerprints Aspergers has left all over my life...and not all of them are bad.  Some are extraordinarily beautiful.  Truth be told, the vast majority are positive. While I recognize that things might have been very different for me had I gotten an early diagnosis or known some of the things about AS that we know today, I also don’t feel like it’s fair to place all of the blame for my early struggles squarely on having it.  Challenges, struggle, mistakes, bad decisions, not getting things we need, facing consequences...these are issues that everyone in life deals with regardless of your neurological standing  A life without Asperger’s doesn’t mean a life free of conflict or bad times. Those things will find you no matter what. More than that, I feel like Aspergers gave me the tools and strengths that I ultimately needed to help overcome many negative situations.  I consider it a blessing.  And that’s not to say it’s fun or that it’s not frustrating and maddening or enough to drive you wonky some days...because we all know it is all of those things and more, but what I am saying is that I truly feel like my life is better off from having been touched by Aspergers than I would have been by not having it at all.

Along the journey of these past 41 years, I’ve picked up many things here and there from people much smarter than myself.  They’ve sown into my life without the thoughts or hopes of anything in return, and if I could pass on even just  3 of those things closest to my heart to any parent, child, adult or other person dealing with Aspergers and autism in anyway, this is what I would say:

Serve others
Have you ever noticed that the happiest people you see are generally the ones who are doing something for someone else?  The ones who are giving selflessly and investing of themselves into the lives of others?  The ones who offer encouragement and plant seeds of hope without any expectation of receiving back anything in return?  Be that person.  Encourage others, walk beside them, and share your experiences.  I wish I was a smarter guy and could tell you exactly why this works...but the simple truth is that I can’t.  I just know that it does.  Somehow there is power in setting aside your own problems and conflicts and struggle, and turning your focus toward helping others through theirs instead.  Serving others has been something I practice with my children regularly, from homeless shelters to mowing yards for elderly folks to carrying grocery bags at a store...again, I don’t know why, but the blessing you receive in a situation like that is far greater than any you give out.  It works.

Fear is a liar
Fear will cripple and paralyze you faster than anything else. It’s relentless. It will seek to isolate you, fill you with doubt, and leave you feeling helpless.  Fear might tell you that you’re alone in your struggle.  It might tell you that everything is your fault.  It might tell you that you’re not capable of changing anything.  Fear says it’s too late; there’s nothing that can be done. Fear will tell you that people won’t understand you, that you’re alone, and it will ridicule you to no end.  Fear will make you feel embarrassed and insecure. Don’t believe it for a minute. Fear is a liar and a thief.  Surround yourself with positive people who speak truth, share experiences, and walk alongside people who support and understand you.  Learn encouragement and forget judgement.  Challenge fear at every turn; make it prove you wrong.  Find new ways, breathe new life.  Try new things and don’t be afraid to fail.  Toss the rule book.  Forget how things have always been done.  Explore options.  After all, if the fear speaking to you is right, then what have you got to lose?  When fear says ‘quit’ or ‘why even try’, that’s exactly when you should stand up and thrown in everything you have.  The fight is worth it!

Celebrate what is
Everyday.  Every little thing.  Celebrate it.  Be grateful for small things and never take them for granted.  Small things become big things.  Focus on the positives and develop those first.  Point out what a person does right, and be willing to leave alone sometimes what they do wrong.  I’m not saying ignore it, or refuse to deal with it.  We should always be committed to making progress and positive change, but I’m saying don’t wait until a certain trait, issue, challenge, struggle or anything else is perfectly resolved before you celebrate it. Any progress, any victory, and small step forward is cause for big celebration in the world of autism. Gratitude is a beautiful and powerful thing.  It can overwhelm troubles and bad attitudes like nothing I’ve ever seen.

You all in this community bless me everyday and I’m humbled to be a part of it. 

Many thanks to you all : )

I can only hope that one day my boys will be as successful and inspirational like Paul . Thank you again for sharing your story with us. You can best believe...this is one story that I will make sure my children and my husband read. ~Karen

Tuesday, April 23, 2013

The Road Less Traveled: Public School Settings and Autism


  • Guest Post by Jennifer Lynch-

    Editorial Note:  Jennifer is a single mother of 3 boys ages 12, 7, and 6. They all have ASD anxiety, SPD, ADHD.  Her eldest also has schizoaffective disorder, her middle son has OCD, Tourette's, and her youngest also has ODD.  Jennifer is one of our "Confessions" Autism Mama's who always participates on our Facebook Page  and private group.  She has a wealth of knowledge and a background as a Psych nurse.  Since her middle son received diagnosis, she has not worked outside the home.  Jennifer is also on the autism spectrum. 

    Jennifers Boys @ Eagles Stadium
    Transitioning times in school are difficult for any child, more so for a child on the autism spectrum. Going into High School, Middle School, and Kindergarten a parent is faced with a lot of choices. These choices come with no manual. Fortunately, as a parent, you are your child’s most staunch advocate and know your child best.
    This is where we open with my son, age 12 and entering middle school next school year. He has been in every setting thus far and this will be his 8th school.
    He got picked up for services by EI (early intervention) for not talking at 2. Graduated into the public pre-school program, and just kept moving up. Kindergarten was full inclusion. It was a great year. So great we did it again! To give him some maturity time, develop speech. It helped. First grade full inclusion another great year. And then the problems started snowballing. Work got hard. Socially inept, we had disciplinary issues. Then attention problems. Before long we are adding medications, and behavior plans. And more services -Social Skills group. Now we are looking away from the LRE (least restrictive environment). We had one triennial that was so dismal we had an IEE (individual education evaluation) just to be certain these scores were right. Well essentially they were, but his needs weren’t being met. Schools a lot of times offer the minimum. Not what they qualify for, you have to fight for that.
    The settings in a nutshell are ‘A’, ‘B’, and ‘C’. An ‘A’ setting is regular education with up to 20% pull out support, ‘B’ is up to 40% pull out support, and ‘C’ is more than 40% pull out and referred to as self-contained.
    In an ‘A’ setting, it’s full inclusion. Up to 1/3rd the class is NT (neurotypical developing). There are two teachers. In an Autism program, 1 teacher is Autism certified, the other regular education. In a non-Autism program it is a regular education teacher and special education teacher.
    In a ‘B’ setting, it’s full inclusion. Same 1/3rd ratio of NT students, same teachers. It’s just more support in small group instruction with the special education or autism certified teacher.
    Now for the ‘C’ setting. In middle school my son can be pushed in for Math and ELA (English Language Arts). Also recess, lunch, and specials. A lot of people argue against ‘C’ settings because there isn’t exposure to typical peers. Maybe so in some programs but that shouldn’t be the case.

    For my son, this ‘C’ setting will offer him a class size of 12 with 2 teachers. Push in for math and English. NT exposure for lunch, recess and specials. Life skills he won’t get in regular education. If the goal is independent living, then this is where he needs training. All the kids have Ipads. This also isn’t provided in the regular education setting. My son has significant writing and speech delays and processing issues. He can keep his Autism classification and continue full day ESY (extended school year) yet be in the ‘C’ setting that isn’t Autism program so none of these kids have that social deficit.

    Every state has their own qualifications on programs for special education. My state of Delaware has Diploma and Certificate of Performance. He can stay DCAS which is diploma track on the ‘C’ setting if we choose. Though it’s quite unrealistic to think he will meet the standards to qualify for a diploma. He can continue working towards a G.E.D. and stay in school until 21, and hopefully in the next 9 years the programs will change to meet the demands of the children that are up and coming. Vocational training in the ‘C’ setting is important too. Getting a job without a diploma, we will just have to cross that bridge later.

    I spent years trying to coerce the school to take my son into the Autism program as he was floundering in the regular education setting. Finally they took him in 5th grade (3rd assessment attempt). Now I’m sending him back to the feeder school. The team thinks I’m batty, and changing my mind which is nothing further from the truth. To keep him in the Autism feeder he’d be in a class the size of 4-6, with all classified Autism, it’s fixed, only choose diploma track or only Alt (alternative program), no pick and choose flexibility. One size doesn’t fit all, just because you have an Autism classification does not mean necessarily that the Autism certified program will offer the best stuff for your kid. Ours in middle school offers self contained with no flexibility and only 4-6 kids and no shot at push in or taking the diploma track. And also no Ipads and no Wifi. Well that sucks! No, we don’t want that Autism program anymore but we shall keep the classification. Our feeder school is around the block with kids he’s known for ½ his life. So many benefits, and I don’t see the cons. No brainer really.
    My advice is look at every program every transition year. To convince your team, get professional letters. I had ready made letters from developmental pediatrician saying he can’t handle changing classes 7 times a day, he needs life skills for independent living. He needs an AT (assistive technology) assessment for the dysgraphia.  I got Physical Therapy script from the neurologist stating that he wants an assessment. Don’t just ask for PT, speech or Occupational Therapy.  Its easy for them to say no. Come prepared with documentation from a doctor ...then they almost can’t say no. Or if you ask and they say we don’t think he/she needs that, then go to plan b. They are too afraid of due process. That gets things moving. We take it as it comes, choose the best option for my son,  and continue zig zagging our way, navigating through the public school system on the road less traveled.

Thursday, April 18, 2013

Marriage & Autism -Guest Post by Renee


Today's Guest Post is  by fellow autism mama and writer, Renee from "It's 5 O'Clock Somewhere".  With a blog name like that...how could we not relate to one another? Renee also runs a Facebook Community  of the same name.  Please drop by and check out her blog and join her on Facebook.
Renee & Her Family
They say opposites attract, don’t they?  I’ve heard that all my life.  I always thought there was some truth to that but it wasn’t until I met my husband that it really, really rang true.

When we got together our obvious physical and personality contrasts are what people noticed and would comment on often.  He’s above average in height and I am the size of your average 4th grader. He rarely talks and I’m a chatterbox.  He prefers solitude to any kind of social interaction while compared to him I am a social butterfly.  He has no filter to speak of and since I am super sensitive, I try to think before I speak so feelings aren’t hurt. Oh, and there’s one other that’s worth mentioning:  my husband has Aspergers, and I do not.  

Okay, those are just a few of the differences between my spouse and I, but at this point anyone reading this can grasp the idea that we’re not exactly alike.  It wasn’t until we were married for a couple years that I really began to see how wide the gaps were.  It was rather like pulling back the layers of an onion; with each layer I realized there were even fewer similarities than I thought.  

Not surprisingly we’ve had a rocky road over the years.  It hasn’t been all bad but it’s been a struggle at times to keep it together.  After five years of marriage we decided to try to have a baby.  I thought he had grown up enough at that point to be the father I knew he could be and it was time.  We were blessed with a gorgeous little boy in August 2002 and settled into family life with the child we both adored.  When our son was just shy of turning three he was diagnosed with autism which naturally rocked our world and forced us to reconsider whether the second child we were thinking of was a good idea.  Mutually we decided that we should just focus on the child we have and do all we can to get him the help he needs.  To anyone on the outside we seemed like we were a united front in that goal and for a while we were.   

Shortly after our son was diagnosed my husband began to suspect that he himself was on the spectrum as well.  He didn’t want to see a doctor and get a formal diagnosis so he took a series of online tests that made it very clear that he was indeed an Aspie, as they’re commonly referred to.   It was shortly after that that anything autism related began to fall on my shoulders.  He no longer wanted to be as involved as he had been in our child’s treatments.   I began to think that my husband felt like he had caused our son’s condition and that thought made him withdraw from being a part of our son’s therapies.   We discussed that and I told him truthfully that I didn’t blame him or any one thing for causing our child’s autism but there was a backing away on his part that was very noticeable and upsetting to me.  

When he told me that he was on the spectrum I did a ton of research on the subject.  I read books and articles about being an NT (neurotypical in clinical terms) married to someone with autism.   Suddenly little quirks of his began to make sense to me.    What seemed to be such cold insensitivity before began to bother me less.  I’m a sensitive person so I cannot say that each comment that he said rolled off of me.   I tried to see it from the standpoint that he was unaware how his words or actions (or in many cases inactions) affected me.   I started to understand why he’d forgo going anywhere with us unless it was a special occasion he couldn’t get out of, such as a major holiday or wedding.  He’d never offer up a reason when I would ask him why sitting home was more appealing than getting out, and I started to realize it was just easier and definitely more comfortable for him just to not go.

Now, let me say this:  coming to the realization of those things doesn’t put an end to them bothering me. I just found myself working harder to try to understand where he’s coming from.   He still says insensitive things without thinking, isn’t able to recognize human emotions (i.e when I am pissed off or hurt) unless I tell him, and is extremely difficult to drag out of the house unless necessary.  It’s very frustrating most of the time, so I vent.  I vent to him and to those I trust, and I try to deal with it in whatever way gets me through it. I tell him exactly how I feel and how it often feels as if I am raising two special-needs kids instead of just one.  He’s unflinchingly honest with his feelings, so I am the same way with him.   When he chooses to stay home instead of going out with us, I try to make the best of it and enjoy my time out with our son as my date.  The questions and comments still annoy me, but at this point I am so used to it and the people who invite us to functions are used to seeing us show up as a twosome instead of our whole family.  

It’s not all bad, this being married to an Aspie business.  For one thing, since they’re pretty much incapable of being phony in any way, you always know where you stand with them.  They don’t just say things because it’s the polite or socially acceptable thing to do.  When they do or say something nice, you know it’s genuine and not just an empty compliment that people sometimes feel they have to. That’s something I appreciate about him and always tell him so.  Another benefit is that since he’s very focused on details, he often is able to see things that I don’t, especially with respect to our child.  Our son has a more classic form of autism but my husband can often understand why he’s upset and heading towards a meltdown, whereas I am not always able to.  He is, in a sense, the autism whisperer in this household.

Every marriage or long-term relationship has its challenges to face.   I’ve heard of situations that make our differences seem like nothing.  He is who he is and I am who I am:  the same person who went into this marriage with the best intentions and the highest of hopes.  It takes work like everything else in life but there are times, not all the time, mind you – that it is worth it.

Tuesday, April 16, 2013

Nothing is Normal. Nothing.


You think that once your children are no longer babies, your sleepless nights are over.  Nothing is normal when it comes to my life. Nothing.

I didn't even plan on doing a blog post today.  I have too many other things to do.  But I woke up with my mind overflowing with thoughts and memories of my dream last night.  I was in a resort with my family and there was a fire.  The property was surrounded small fires that eventually turned into a big fire.  And guess who was trying to put the fire out?  That's right...it was me.  Because that's what I do you know...put out fires.  Add that to my resume of jobs that I don't get paid for .  Firewoman. 

Sometimes I feel like I'm in an abusive relationship with my17 year-old son.  I have never been in an abusive relationship with a man,  but I think this must be what it feels like.  He dumps all of his crap on me.  He pushes me to the limit with all of his drama and each and every whacky, off the wall thought that he has to share with me.  I bare the brunt of the anger that he does not show the rest of the world.  The rest of the world only gets a taste of it.  I get the whole seven course meal! No wonder my appetite is so off these days.  I forget to eat sometimes probably because my mind is so full.

He is in the process of grief and anger over loosing a friendship.  Who cares that he actually has more friends right now than he has ever had in his life?  It's the elusive one that seems to count more than everything.  It means nothing that he spent the weekend hanging out with two friends having a complete blast.  He comes home angry about a friend who no longer wants to hang out with him.  How in the hell does this happen.  Why can't he see his blessings? It doesn't make any sense.  This isn't normal!  But nothing in my life is normal.  Nothing.

Who has a local cop on speed dial to come over and talk to her son who is acting out of control? Me.  Who has a police officer sitting at her kitchen table talking to her son because he was so angry earlier that evening that he wanted to storm out of the door and walk over to his ex-friend's house to make him talk to him?  He wants to show-up at someone's home ...uninvited and angry.  What is that going to get him other than the boy and his family thinking that they made the right choice by staying away from this boy?

He dumps every negative thought and feeling on me, using every curse word in the book for going on 2 days now...until I'm at the point where I no longer want to be in my own home when he is here. I want to run away, which I actually attempted to do Sunday night.  He begged and pleaded for me not to leave.  He loves me.  He needs me.  He promises to listen to me from now on.  "What can I do Mom? I'll give you every dollar in my wallet if you won't leave.  Don't give up on me Mom." Abusive. Relationship. Not. Normal.

He sits there in front of our officer friend saying all of the right things.  Repeating the same words that I've said to him over the past couple of days, as if he has internalized the thoughts and knows the right thing to do and feel.  He is the exact complete opposite of the hate spewing monster who has been parking in my bedroom for days, refusing to leave...refusing to give me any space...any peace  Shooting me over an over with a barrage of negativity until my head is splitting and pulsating in pain.

To put icing on the cake...at 2 a.m.  I am awakened because the other son, Blue, knocks on my door to tell me he has to use the restroom.  What in the hell does that have to do with me?  He wants to use MY bathroom instead of his --the one that he shares with his brother.  It may not be clean enough for him.  I refuse to get up.  I send him packing back to his own freaking restroom!  I lay in bed listening to the sound of the toilet seat slamming.

The next thing I know...there is another knock at my door.  I think I flooded the toilet.  Really?!?! Nothing is in my life is normal.  Nothing.
My Dog Harry Sleeping on his back.
Nothing is Normal. Nothing.
After this last interruption ...I lay awake listening to my husband's heavy breathing.  Thinking thoughts that my boys have shared with me over the past couple of days.  Sleep evades me.

Before Bed, Blue tells me about feeling rejected by his best friend because he invited another friend over to spend the night.  Blue has been wanting to spend the night with him for weeks and "he has excuses or blown him off."  I remind him that friends are not exclusive.  He also has other friends that he spends time with.  He can not choose or command that his best friend spend time with him and only him.  The problem is, Blue's self-esteem has been in the crapper for a while now.  He is depressed and extremely sensitive.  And of course ...I feel his pain.

This is what I lay awake thinking about this morning when I should have one more hour to sleep.  But I can't.  Because nothing in my life is normal.  Nothing. 

Monday, April 15, 2013

Fathers For Autism -Guest Post


  • I am thrilled that Today's post is from one of my favorite writers -a daddy blogger "Fathers for Autism"  he also has a wonderful Facebook Page which is Simply A Must Follow.  The love that he has for his children shines through every word that he writes.  You just know that he is raising two children who will be wonderful citizens of the world when they grow up. 


    My son fell asleep in my lap, exhausted from his day.
    I may not have too many more years of this...him wanting to cuddle with Daddy. I know I should cherish this moment, but I can only think about today's events.
    I watched him be big brother to his older sister today.
    Her challenges with autism have aged him, making him more patient, wiser.
    I looked at his sleeping face, relaxed at last, and saw something I hadn't seen all day. I saw the face of a 5 year old boy. He seemed so much older earlier...
    Nothing out of the ordinary happened today, just a typical day in an autistic household, but I saw something in his eyes and demeanor that made me both sad and proud.
    He got it. He understood.
    His sister was watching a movie and it was time to leave. Shark Tale. She'd seen the movie 100 times, so it wasn't a new or particularly special experience. Of course, a movie doesn't need to be new to be important and it doesn't need to be special to be meltdown-worthy.
    I said my daughter's name and clearly she knew my intent because the scream of "NO!" happened before I could finish the sentence. She shut her door and began to decorate her walls with the marks of flying objects.
    Then it happened.
    My son calmly walked into the room, unconcerned with his sister's anger. He walked over to her and said "We can watch the movie together tonight. Would you like to play with my video game in the car?".
    He repeated this a few times until she heard, understood, and accepted the offer. My son kept a calm tone and posture the entire time.
    5 years old.
    Later that day, she had taken the iPad from him during his turn. They get a limited amount of time with it and have to take turns. He didn't reach out, didn't whine, didn't get upset. He simply walked next to her and said "Can I watch you play, since you took my turn and then you can watch me play during your turn?". She nodded. I picked my jaw up off of the floor.
    My pride in my son is well founded. He is becoming an extraordinary person due, in no small part, to his sister.
    It makes me sad, however, that they aren't simply playing, fighting and competing with each other. Typical siblings.
    He will never know that.
    His life is one of defending against teasing and worse, learning to be patient, and living in a household unlike any of his friends. He will likely learn leadership, empathy, and sense of charity.
    His innocence, though, is lost forever.
    He's seen the looks the other kids give his sister, he knows what they mean. He doesn't understand why they fear her, mock her, condemn her. She's simply his sister. He doesn't know her any other way.
    I hope he always has the same loyalty, love and acceptance for her. I hope he chooses to continue to shepherd and guide her through the world. I hope his need to be her champion remains strong.
    I can't ask him to always be there for her, especially when I'm gone, but I really hope...

    I am Guest Posting today over at Phat Jaye's -Find My Eyes. Please stop by and check out my post! 

Friday, April 12, 2013

A Tale of Two I.E.P.s Part Deaux

Blue ran his entire I.E.P. meeting!  The kid is a freakin' rock star!  In the beginning he made all of the introductions.  He then followed the pre-planned agenda and fully participated in the plan for his transition into high-school.

Like I said in Part One of this post ...the difference between Blue and Red is like the difference between night and day!  Not only does he have a road map for his transition into high school ...he has a plan for college and graduate school.  He stated during this meeting that he wants to become an Industrial Engineer!  Hell-looo!  This profession requires a minimum of a Bachelors Degree, however he would like to get a Master's Degree as well.  Then he says, "If I'm really lucky...I wouldn't mind getting a PhD."

He tells us all how he felt about his progress in the past year and followed up by asking me how I felt about it.  He then asked me what my concerns were. I told him that I think he has made a great deal of progress this year.  He has grown and matured.  I am very proud of the self-advocacy skills that he has developed.  My biggest concern is his level of anxiety and stress at the end of the day. He is so wound up by the time he gets home, I see a different kid than his teachers see at school.  I see meltdowns and falling apart over homework.  Some days, he is so worn out from making it through the school day that he has nothing left to give at night - especially, for 2 or 3 hours worth of homework.

He then goes around the room, asking the same question of his Language Arts teacher who is in attendance, his Special Education tracking teacher, and the School Psychologist.  After everyone gave their reports,  he asked his Special Ed teacher what his other teachers (who were not in attendance) thought about his progress this year.

The reports from all of the teachers were glowing -even from the Pre-AP Math teacher from hell.  He has no love for her ...and because she comes across with a very flat affect, and is not warm and fuzzy by any means, he thinks that she doesn't like him.  Not only that, not to long ago, she made an attempt not to give him one of his accommodations (extra-time).  He had to advocate for himself and go above her head to make it happen.  He didn't appreciate that at all!  I celebrated the fact that this boy who was afraid of his own shadow in 6th grade, is now standing up to a teacher who was trying to make him feel bad about getting the accommodations that he is entitled to by a legal document.  Hah! Take that!

His Science teacher said he has "superior skills in science, participates well and asks really good questions."

His Math Applications teacher (who helps with math practice and techniques) also gave a wonderful report,   encouraging Blue to please come and see him one on one for tutorials more often, because he "loves to see the way that his mind works."

Whatever kind of math they are doing at this point, actually requires a lot of creative thinking...outside of the box.  Where it's all about how you find the answer and showing your work, rather than the actual answer itself.  I'm glad he doesn't need my help with this!  I am clueless when it comes to Algebra and beyond.

I took special note that his History/Social Studies teacher said, "He is a brilliant kid with a heart of gold." Be still my heart.  I had to remind him of this as soon as we got home that afternoon when he started in on the negative self-talk. Woe is me.  I'm such a horrible person.
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The most negative thing that any teacher had to say was that, "He doesn't seem to give himself credit for being such an incredible student.  It's hard to watch him struggle internally when he is actually doing so well."

We talked about his schedule for next year.  He will continue with AP Geometry, Spanish 2, and AP Human Geography.  He had some apprehension about taking AP Language Arts because of the novels that will be assigned.  Reading and interpreting long works is not his strong suit.  Although, he scored commended on state testing in reading, the passages read in a state test are short.

His Pre-Ap Language Arts teacher  was there to cheerlead him --recommending that he stick with AP Language Arts in high school.  She basically told him, there will be a lot of knuckle-heads in regular Language Arts and he will become exasperated with them.  The students in AP are more serious-minded like Blue.  So, it's kind of a trade off.  You could have the easier class, but he would be trading it for the stress of dealing with kids who are loud and playing around in class. She was thrilled when he decided to give it a try.

I requested the presence of the Special Education Lead/Counselor from the high school to attend the meeting.  She also brought along one of the math teachers who also works with the local community college in the office of Students with Disabilities.  She was able to inform us all of the types of accommodations that will be available to him in college, so that we can structure his accommodations in high school along the same lines.

Accommodations~

  • We fought for  -the ability to get audio books to help him have multi-sensory reading experience.  The teacher this year actually provided them herself.  Next year -it will be his job to find the audio book, because that's what he would do in college.
  • He will also have extra-time (up to 2 days) to complete assignments.  
  • He will have a study-hall period worked into his schedule, which will also include a social-skills component.  He will have an hour and a half, every other day to work on completing assignments so that hopefully, he will have a little more down time at home to decompress.  
  • He will have assistance with breaking assignments down into chunks, so that he doesn't become overwhelmed and shut down.  

Most of these accommodations Blue actually asked for himself.  I am so proud of the fact that he knows exactly what he needs in order to be successful.

The last thing I fought for was an OT Evaluation for Blue.  Red is working with a wonderful Occupational Therapist at the high school who has gone above and beyond to help him with so many ADL's (activities for daily living).

Blue needs help with emotional and stress regulation.  I think that he needs a way to release some of his stress throughout the school day so that he doesn't come home so wound up.  An assessment will look at his strengths and weaknesses.  Therapy can include strengthening cognitive skills such as memory, following directions and paying attention to detail.  It will also assess his physical skills like coordination, strength and endurance.  Blue also has still not mastered tying his own shoes.  He can do advanced math ...but can't tie his shoes.  An Occupational Therapist should be able to help him with that.  I have tried everything I know how to.  He just gets frustrated and gives up.  (And of course, it's all my fault!) 

The middle school I.E.P. Coordinator tried to give me this song and dance about him not really needing the evaluation. Another teacher spoke up and said that Occupational Therapy is usually only for physical issues.  They said the reason that Red receives services is because of how his pencil grip slows him down in writing.  Um...I don't think so.  It's so much more than that.  

The bottom line is that we walked away with my requested evaluation.  Before the meeting, I called Blue's tracking teacher to find out about the possibility of getting one.  Immediately,  she called the Occupational Therapist who would do the evaluation.  She agreed to do it ...no questions asked.

It never ceases to amaze me how you can sit down at these meetings and people can try to block services that are available to your child.  They give you that blank look like, what are you talking about lady? We don't do that.  They seldom come up front and offer all accommodations and services that are available.  It's like the policy is, 'Don't know...don't tell.  Instead of, 'Whatever we can do to help.' 

All  in all ...I would say that both meetings went very well.  They were completely different meetings, for completely different brothers on the autism spectrum.  We walked away with everything that I feel that both of them will need for the coming year.  But if not, you can bet your bottom, we will be sitting down at the beginning of the next school year to make any necessary adjustments.

Here's to kicking ass and taking names and getting your child what he needs and deserves! Cheers!  

Thursday, April 11, 2013

A Tale of Two I.E.P.'s -Part 1

This week I had not one but two I.E.P. meetings to attend...one for each of my boys.  The two meetings could not have been more different, just like my two very different boys who are both on the autism spectrum.  These two boys being raised in the same environment, by the same two parents are as different as black and white, night and day, fire and water.  They may have some things in common ...but their mindset and belief systems are on opposite ends of the spectrum.

First up was Red's meeting.  He is 17 years- old, in his junior year of high school.  The goal of this meeting is to discuss goals to get him through graduation.  We also discussed transitioning him out of the high-school setting as soon as possible.  Not only do we want to get him off of the campus soon, per my request and his doctors suggestion, we are actually cutting the length of his days down immediately.  The accommodation puts him on a 3/4 day schedule, in order to cut down on some of the unstructured time in the hallways, and lunchroom.  These seem to be the times that cause him additional stress and it is when he gets into the most trouble.  He gets frustrated with peers when things don't go as he thinks they should. Social issues during these times seem to make him completely lose focus in the classroom setting.  He ends up getting in-school suspension and dealing with clueless Assistant Principles for discipline which by the way,  is never productive.


I requested that a representative from the district's special education department attend our meeting, primarily because of the issues we have been having with school administration and the way they have been attempting to handle disciplinary measures. They seem to exacerbate his issues, rather than making them better.  They want him to sign these bullshit agreements to not talk to certain students.  A couple of weeks ago, I had to stop him from signing such an agreement.  I literally burst into the A.P.'s office just as Red was about to go over the moon with anger, which would end up turning to rage in our home environment.  Of course, the assistant principal couldn't give a shit about that! 

I followed up with an e-mail documenting that in no uncertain terms, is Red to sit down with any Assistant Principle or Administrator and sign documents without my presence in the future. What happens is Red turns around and perseverates on the document itself, the Assistant Principal, and how unfair it is,  rather than focusing on the behavior that caused him the problem in the first place.  Thus creating more negative behaviors and less focus on education.  

Admittedly, part of the problem is a lack of respect on Red's behalf.  He does not seem to recognize or care about the authority of Vice Principals.  He seems to see them as an annoyance.  He has no problem marching right up to them to tell them how he feels about something, not realizing that he is creating a  more antagonistic environment for himself.  A few days of in-school suspension after cursing at one of the AP's or a peer, does not seem to change any of the behaviors.  Yet,  he seems to realize that's all they've got.  They can't really hurt him.  This is not painful enough to deter the behavior. 

On the other hand, he totally respects the authority of his special education team of teachers because he knows they really care about him.  They are on his side,  in his corner ...even when he is having a bad day.  He also respects the authority of the campus Resource Police Officer.  First of all, the officer has taken the time to get to know him, and will give him cool down techniques, instead of antagonizing him when he's already upset.  Red also has enough sense to realize that getting a ticket for disturbing the peace, verbal assault, or possibly going to jail for destroying school property ...is definitely not a consequence that he wants! 


We start the I.E.P. meeting with Red in the room, discussing his feelings about his current school year, and what he feels he needs as far as support for the following school year.  He is mostly talking about social issues...very little to do with academics or goals for his future.  He just wants to get out of there.  High school is pretty much an exercise in torture for him.  Although, he has a lot of positives in his day, and he has come so far, he still has a tendency to focus on the negatives.

One of the biggest positives is his work with students with more severe disabilities.   In fact, as we were  walking down the hallway before his meeting, he sees some of his special friends in wheel-chairs,  or those who don't communicate much verbally.  He goes up to them, gives them a huge hug, a smile and introduces them to us.  He actually ends up leaving his meeting early to go on a field trip with these students.

We set up his schedule for next year.  He will complete all high-school credits necessary for graduation by January.  He will also only be on campus half-days.  Hopefully, he will be employed the other half of the day.  He will also be involved in the 18 Plus social skills program that the district offers.  The last semester of school will he will be completely in 18 Plus services.  He will then walk the stage with his peers in June to receive his diploma.

Now I have the joys, of working on other transition issues for him.  We will need to file for guardianship before he turns 18.  I just do not see him being responsible enough to make financial and/or medical decisions for himself at the age of 18.  For example recently, when we received his lab results telling us that he needs to watch the saturated fat content of his diet, he tells me that's ridiculous! Yes son...the scientific, medical lab results are ridiculous!  It's a conspiracy even.  The idea of changing his diet is not something he wants to face.  Changes period, are not the friend of many people on the spectrum.  The thought of change causes anxiety and for Red an automatic answer of -NO!

I will also be applying for Social Security Disability before he turns 18 in hopes that he can start receiving benefits once he turns of age.  That should help with some of the expenses of college or receiving some professional training, so that hopefully someday, he can become independent and get the heck out of my house!

Although I walked into this meeting somewhat nervous and ready for a fight, it went really well.  On the way out the Special Education District Representative gave my husband her name and phone number and asked us to call her anytime if we were having difficulty with the high-school administration.  She also stopped by the A.P.'s office and had a chat with him to express our concerns.

Editorial Note: 3/4 or half-days is a possibility as an accommodation depending on your child's circumstances.  My son is on modified curriculum, which makes it much more feasible.  Otherwise, it may extend the period of time in which they complete courses required for graduation.  Ask your doctor or therapist if you think this is something that would truly benefit your child. 

Click Here to go to "I.E.P.'s Part 2"