Good Citizen

Good Citizen 2014

Each year at my kids' elementary school one student from each classroom is awarded the "Good Citizen" Award.  This year it went to our daughter.  She had to prove herself throughout the entire school year.  Not only being a good classroom citizen, but modeling that citizenship for other students.

Last week I received the following, very touching, email from her teacher:

          "I wanted to let you that just prior to our last IEP meeting for Audrey last month, I had told the other therapist that Audrey was doing so well, that she was at the top of the list for receiving the citizenship award because of her accomplishments. 

          Although I usually struggle with this award, Audrey stands out as the best receiver of it.  This year, Audrey will be receiving my class' citizenship award.  Again, she has come so far in many areas this year, is academically gifted, and has soared on the social side as well. There is no doubt that every single student has respect for Audrey, and it is very clear that she had to earn their respect on her own. In addition, she is a good citizen despite her personal challenges and NEVER breaks the rules.  She has learned to help others, respect them, and encourages good behavior as well.  Thank you so much for the opportunity to allow me to have Audrey this year.  She is amazing and I have no doubt that she will continue to succeed.

          She is also so very lucky to have parents like you and your husband.  Please accept this award for yourselves as well because she could not be a good citizen without your support. THANK YOU for all you have done for your child."

While we knew upon attending the awards ceremony, Audrey did not know she'd be receiving this award. We were beaming and when her name was called I watched her head pop up in surprise.  I wish I could have seen the surprise on her face as well.  

We are so proud of you, Boo.  You have come so far this year and we have no doubt you're going farther than we can imagine.  Remember, you have it in you to continue this success.  Always be proud of your accomplishments and know it's your hard work and good character that got you there!  We love you!

Losing It

photo courtesy of someecards/google images

All moms (and dads) at one point or another, I'm sure, have lost their shit.  Your kid is frustrated, you're frustrated, it's dinnertime, it's bath time, it's bedtime; it's never a good time.  Your tantrum becomes bigger and louder than your kids.  You're yelling, you're slamming, you turn around and no one is there.  They've retreated because they know...Mommy lost her shit!

There seems to be a stigma (okay, more like a self imposed burden of pressure) attached to special needs parents that we aren't allowed to lose it.  We must have virtuous patience at ALL times.  We must not get frustrated in front of our special needs kids, we must not get upset when they are upset, we must never lose our shit.  If we, as special needs parents, can't hold it together then who the hell can?

I will admit I've lost my shit with Audrey.  Our biggest moments of contention are over A. homework or B. one of her worries.  If she doesn't get the answer delivered in the black & white way she can comprehend then she's gonna lose her shit.  Trust me when I say a 10 year old Aspie losing her shit is not pretty.  When she loses her shit, I inevitably lose my shit.  It is a raging, thunderous shit storm that neither one of us can take cover from.  We ride out the storm and we both end up exhausted and apologetic.  I will also admit that I have learned from these storms and I find myself losing it less and less with her. Which is the goal, to lose it less and less.

Our love for each other is never in question.  I love my daughter "to the moon and back times infinity plus one", (one of our sayings to each other) but that doesn't mean I love those moments of frustration.

Recently a mommy-friend to a brilliant & beautiful seven year old girl on the spectrum, including ODD, ADHD, and a list of fears & worries, lost her shit.  She said this to me after the storm had passed:

I spend so much energy trying to understand what my daughter needs only to be the one to act like an idiot.  So frustrating; just can't win.  Am I the worst mother ever?  She was even apologizing when it was my fault.

My reply was this:

What you have to do is royally f@$! Up before you get it right.  Parenting special needs is trial and error...mostly error.

Like myself and many before me I believe my dear friend will learn from this and as time goes on will find herself losing it less and less; she is one shit storm closer to her goal.  

We (and by we I really mean I)  need to lose that self-imposed-burden-of-pressure-feeling that special needs parents need to be perfect.  Hell, we (and by we I really mean I) need to lose that feeling that any parent NEEDS to be perfect.  There is no such thing.  We're all just doing the best we can! 

While it is okay and human to lose your shit, it is NEVER okay to be abusive!!  Special needs or not.  If you find yourself physically or emotionally abusing your child you need to call  1-800-422-4453

Teacher of a Lifetime

Audrey is only in 4th grade so it may be too early to say this, but I'm pretty sure her current teacher is her "Teacher of a Lifetime", that ONE teacher who changed our lives, the BEST thing to ever happen to our family.

Audrey has had MANY wonderful teachers no doubt.  We've developed a close relationship with each one in her short school career none of whom we'd trade for the world.  This year, however, marked a turning point and it all started with Mrs. K.

Recently our special education department asked parents to nominate a group or teacher who had made a difference in our child's life.  While our daughter has an incredible team molding public education to her needs, we felt it was Mrs. K. who had the greatest impact to date.   I am beaming with pride to announce that she was accepted for the 2014 Rise Up Award.   Here is our nomination:

Mrs. K and Audrey 2014 4th Grade

A short nomination letter cannot come close to acknowledging the inspiration provided by M.K.  She would be worthy of a novel, as it would take pages to express how important this woman is in our lives. Mrs. K's contribution to Audrey's success and triumph over her special needs could be compared to teaching a child to defy gravity. She taught Audrey to fly again, to find her wings.

At the beginning of 4th grade Mrs. K recognized Audrey's challenges right away, and worked with her rather than against her. She appreciated both Audrey's abilities and limitations - rather than attempting to mold Audrey to the classroom, she molded herself to Audrey's needs, while not singling her out or excluding the other children. In an early conference Mrs. K told us that we influenced her to be a better parent. What a shock - how could we have influenced one of the greatest teachers we had ever known? Mrs. K drew from her personal experiences when working with Audrey, and this only enhanced the teacher student relationship.

Before Mrs. K., Audrey hated school. She cried every morning and every afternoon. Because of Mrs. K., Audrey has started to look forward to school, and there are no more tears. Audrey has even acknowledged the future of her education. She is beginning to soar again - as a child should.

If you have a special teacher in your child's life, special needs or not, take the time to thank them.  Your child may be 1 of 30 in a teacher's day, but your child's teacher could be the ONE making their day!  

Mrs. K. receiving her "Rise Up" Award

We love you, Mrs. K!

The look you're not getting

One of the traits for Asperger's Syndrome is the inability to make eye contact.  One of the reasons, I believe, this to be is because of all that occurs on our faces during a typical conversation.  You are talking, your lips are moving, your eyebrows are arching, your forehead is wrinkling, you're waving your hands, and you're still talking.  To a person with AS, who typically is also dealing with Sensory Processing Disorder, this is an overload of information to process at once.  We, those of us familiar with AS, know this and typically work around the social "rule" of making eye contact.  We look for ways to teach our children to make eye contact to be more socially accepted.  We beg teachers to let our kids doodle while getting instruction so they can concentrate on words alone.  

Look OR Listen NOT Both (google images)

Even as we work on that have we ever really thought about if from the child's point of view?  Recently I came across something Audrey wrote.  It is simple and to the point and didn't offer a ton of insight, but it did put me in my place.

"I heart being nice.  But sometimes I have a tough time doing so in person.  I'm better when I can't see someone's face.  Kinda weird".  

First and foremost my heart melted because she hearts being nice!!  (I'm totally doing something right)  Then my heart broke because she sees this as "kinda weird".  Whenever one of my kids thinks they are weird or, more often than not, that Mom is weird I chant, "Embrace your weirdness".  And with my Aspie I always tell her, "wired, not weird".  She does these things because of the way her brain is wired.  Embrace that too!  Most importantly, it's for us to heed her statements.  Accept that it's tough and be okay with that.

So, my point(s) are this.

**If someone is not making eye contact with you don't jump to conclusions and think they are rude.

** Consider for a moment that this person is uncomfortable looking at you while you speak because of all the sensory information you are putting out there to be processed at once.

**If you encounter a person like this do not be afraid to ask them if they'd rather not look at you.  You aren't being rude by asking, you are being considerate and in tune to your audience.

**We all have our own idiosyncrasies; embrace the way you are wired.

Read All About It

Here is a list of books that have been helpful in our journey with Asperger's Syndrome.  This is not an end-all list; there are many wonderful books out there.  I will add more as I come across them.    If you have some to share with me, please leave a comment.

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When Audrey first started OT (Occupational Therapy) this book was suggested to us by her therapist.  It helped us to understand so much of what she was dealing with when it came to her Sensory Processing Dysfunction.

The Out-of-Sync Child  Written by:  Carol Kranowitz & Lucy Jane Miller

From Amazon's Book Description:  The Out-of-Sync Child broke new ground by identifying Sensory Processing Disorder, a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. This newly revised edition features additional information from recent research on vision and hearing deficits, motor skill problems, nutrition and picky eaters, ADHA, autism, and other related disorders.

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When Audrey was officially and clinically diagnosed with ASD we bought this book to read with her.  She felt so empowered to have this information and know there were other kids like her.

Can I tell you about Asperger's Syndrome?  Written by: Jude Welton

From Amazon's Book Description:  Meet Adam - a young boy with AS. Adam invites young readers to learn about AS from his perspective. In this book, Adam helps children understand the difficulties faced by a child with AS; he tells them what AS is, what it feels like to have AS and how they can help children with AS by understanding their differences and appreciating their many talents. This book is ideally suited for boys and girls between 7 and 15 years old and also serves as an excellent starting point for family and classroom discussions.

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School Success for Kids with Asperger's Syndrome  Written by:Stephen M. Silverman & Rich Weinfeld

From Amazon's Book Description:  Hundreds of thousands of children face life with Asperger's syndrome, a mild form of autism spectrum disorder that affects a child's language and social skills. Kids with Asperger's have average to above-average intelligence, but often have obsessive interests, are socially awkward, and do not understand the subtleties of language and conversation. With concentrated effort on the part of parents and educators, these children can begin to overcome the difficulties of this disorder and find success in school and life. 

School Success for Kids with Asperger's Syndrome covers topics such as recognizing and diagnosing Asperger's syndrome, addressing the needs of students with Asperger's, implementing successful practices in the classroom, working with the school system, and providing interventions in the home to help develop needed skills.

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How To Teach Life Skills to Kids with Autism or Asperger's  Written by:  Jennifer McIlwee Myers, Foreword by:  Temple Grandin

From Amazon's Book Description:  In the real world, people on the autism spectrum need the same kinds of day-to-day skills everyone else needs to be functional!

It's true. No matter how high-functioning children with autism or Asperger's may be or may become, they function better as adults if they’ve had the chance to learn basic skills, from being on time to good personal hygiene. But many reach adulthood without those skills.

Enter Jennifer McIlwee Myers, Aspie at Large.

Coauthor of the groundbreaking book Asperger's and Girls, Jennifer's personal experience with Asperger's Syndrome and having a brother with autism makes her perspective doubly insightful.

Jennifer can show you how to:

• Create opportunities for children to learn in natural settings and situations
• Teach vital skills such as everyday domestic tasks, choosing appropriate attire, and being polite
• Help individuals on the spectrum develop good habits that will help them be more fit and healthy
• Improve time management skills such as punctuality and task-switching
• And much more!

 Jennifer's straightforward and humorous delivery will keep you eagerly turning the page for her next creative solution!

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Identity Revealed

Photo courtesy of Google Images

When I started this blog I used our daughter's nick name, "Boo".  I did this for two reasons.  One, I wanted people who read this to be able to identify with Asperger's Sydrome itself and not with just the individual that I identify Asperger's with.  Two, I wanted to somehow protect our daughter's true identity.

I have been thinking a lot about this and decided that my reasons didn't make perfect sense.  Coincidentally not much about Asperger's makes perfect sense.  There is a saying out there in the Autism community:  "If you've met one person with Autism you've met ONE person with Autism".  This is a great quote because   there are incredible differences among children and people on the spectrum in how they learn, think, feel, behave and communicate.  People on the spectrum have many of the same characteristics that help diagnose Autism, but they are as individual as snowflakes; no two people with Autism are alike.

Our daughter is Audrey.  She is our "Boo".  At the time of this entry she is nine years old.  She has Asperger's Syndrome.  She does not define herself as Autistic.  You may read this blog and identify with a lot of her traits characteristic with Asperger's, but she is not like you, not like your child.  She is her own person.  I hope relating to her for who she is, her true identity will actually help you identify more with your own experiences as a parent to a child on the spectrum, particularly Asperger's, or as someone living with ASD.

Be true to yourself, do not hide your real identity.

"One of those well meaning moms"

Photo courtesy of Google Images

When Boo (now age 9) was three years old we went to a birthday party for one of her preschool classmates.  There were 8-10 preschoolers and as many moms.  We were all in close proximity.  While the other kids were running, playing, and having a lot of fun interacting with each other my Boo clung to my side, crying, screaming, and thoroughly not enjoying herself.

At the time I cared what other people thought of my parenting, and I was mortified that my child was the only one screaming during what should have been a fun couple of hours.  Soon it was time to eat a snack of half-moon cookies.  I remember that Boo had calmed down, but was still visibly upset.  As she sat in the chair at the table she began sobbing looking at her cookie then looking up at me.  Looking back at her cookie she reached towards it ever so slowly, the closer she got the harder she cried.  It took me only seconds to realize she did not want to touch it.  The feel of the frosting on her fingers was more than she could bare.  There I was again, caring what other parents thought of me and my child, feeling embarrassed that my child was the only child using a fork to eat her cookie. 

Finally it was time to go outside.  The minute we stepped out of the house a switch flipped inside Boo.  She was happy again, calm, and content to play in the yard.  

In the midst of all the chaos one of those well meaning moms asked, "Has she been diagnosed with Asperger's Syndrome?".  I will never forget how that one question made me hate that mom.  How dare she even suggest something be wrong with my precious daughter.  What the hell did she know!  I remember telling her she did not have Asperger's (even though I didn't know much about AS I knew Boo did not have it).  I remember complaining to my close friends how other moms never know when to mind their own business.  I never admitted that deep down inside I knew something was up with Boo.  That incident was the beginning of what would later be diagnosed as Sensory Processing Disorder (SPD). 

That birthday party was an overstimulation of senses that Boo could not process all at once.  In the noise department we had several adults talking at once, along with several children yelling & playing.  In the visual department we had pretty packages of all different sizes and shapes, balloons in many colors floating around, and a diversity of people's faces in close proximity.  In the taste & smell department we had sticky frosting, sweet cookies, fruit juices, and an array of other foods.  ALL!  AT!  ONCE!  Still don't know how that feels to a child with SPD?  Try this little experiment:  

Go into a room, light some scented candles.  Turn the tv & radio up loud, turn on all of the lights, call in your family and ask them to talk to you.  Get the dog barking, call up your best friend on the phone, grab some colorful scarves and dance to the radio.  ALL!  AT!  ONCE!  

Now shut it all off.  You can breathe again.  That was the switch that flipped when we took Boo from the party to the outside.  

Years later I no longer care what other people think of my parenting, my children's behavior, or even their misbehavior.  Years later I wish I could go back to that "Well Meaning Mom" and give her a hug and a thank you.  She got us thinking, she made us realize that we had something to research, she had us questioning Boo's behavior.  She was not rude or imposing.  She truly was one of those well meaning moms. 

I learned that I could trust other moms, trust my gut, and listen to my child.  After all, I too am "One of those well meaning moms".  

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If you think your child might have Sensory Processing Disorder or want to learn more about children with SPD check out  The Out of Sync Child by Carol Kranowitz .