Telling your child she has Asperger's

I guess perhaps we should start with how not to tell/explain to your child that he/she has Asperger’s Syndrome or any other disability.  If many of you watch Parenthood, which is one of our absolute favorites here is a clip from the show when Adam and Christina tell Max that he has Asperger’s: 

http://www.nbc.com/parenthood/video/ep-218-the-runners-stumble/1307085

I may have practiced that one before I sat down to tell him.  We had already told Molly at this point, and after watching this clip it was one of those rare instances where I felt I should pat myself on the back (these moments are especially rare lately).

For many denial is a way of life.  They somehow don’t see the problem or choose not to.  Our experience has been different.  Molly started life just as most other children do.  I had a normal pregnancy, delivered her at 40 weeks and breast fed her until 14 months.  She was alert and all developmental milestones occurred early.  She has always been curious and as I mentioned before just has a joie de vivre!  The only characteristic I would note looking back - her sensory issues have existed for as long as I can remember.  I just wasn't aware of what was going on, as she was my first child, that was just Molly.   When she entered school as a kindergartener life started to change.  

Suddenly odd behaviors started to emerge.  Strange animal noises were present at inappropriate times as well as many anxiety issues - these became significantly noticeable in first grade.  I had the benefit of being a first/second grade teacher before she was born and as such was very familiar with “typical” behavior for this age. Something was “off” and we searched high and low, hit brick walls, had several misdiagnosis and by 4th grade still nothing.

I was struggling trying to help her and failing miserably.  The only way that I was succeeding was providing her with a safe place and trying to focus on her strengths.  As I have said in a previous post I felt that she had so many of the characteristics of Asperger’s Syndrome (apart from her brilliant sense of humor) that I started purchasing books and reading about it, searching for tools.  Luckily, Ms. L. at school had also observed Molly’s behavior and called.  Legally, school specialists are not allowed to diagnose.  She proceeded to ask me if there had ever been a diagnosis for Molly.  I shared with her that she had had a misdiagnosis of ADHD (which she does actually have as a co-existing condition) but that I had always felt she had more of the characteristics of Asperger’s.  Ms. L. then proceeded to tell me she was so glad to hear me say that as she felt as though (with her experience dealing with these kiddos at school) Molly had those characteristics as well and the sense of humor characteristic is actually a misnomer.

I immediately called and scheduled and appointment with a notable Pediatric Neuropsychologist and Molly and I were put on a wait list for an all day panel of tests.  While we waited for the results I was reading several books at once, looking for some help and suggestions.  Luckily, falling asleep is a troubled area for Molly.  At this point I would normally go in and lay down with her for a little while trying to help with some of the anxiety and quiet her day.  It was at this point that I took out the book Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family. I had left it in her room hoping that she would read it on her own time.  After a few days of suggestions I grabbed the book and jumped on her bed.  Laying there as we did many nights we started discussing the day and I brought up Asperger’s.  I told her that I thought she may have it, but regardless of the diagnosis she has many of the characteristics and as such maybe we would find the tools to help her inside.  

I went on to explain (before we opened the book) that Asperger’s comes with strengths and challenges.  We started with the strengths focusing on her math and science abilities, her strong vocabulary and her amazing writing and reading skills and that these have all been fairly effortless for her.  Our discussion moved to discuss other kids at school who need help with math and other subjects, they try and try but just can’t seem to grasp it and need additional help in the classroom and at home.  She knew several kids in her class that needed these type of interventions.  We then addressed the issue of her struggle with social norms and friendships.  A lightbulb went on.  “Oh I get it!” she said.  “I am really good at those things at school, but have a problem with the social part!”  Explanation complete.

The book is a story about Adam and takes the reader on a journey of what it is like to be him.  It focuses on his high interest areas, upper body muscle weakness and many other similarities.  I read through it that night and I will never forget the look of peace on her face.  She was so relieved to hear that other people felt just like her, that she was not alone.  Which is exactly why I write this blog for those of you who feel you are, you are NOT alone.

Don't Judge Me

People watching becomes a continual ritual when you have a child with Asperger's.  Whenever there is a social gathering I ALWAYS worry that some sort of meltdown or inappropriate response will trigger a reaction from adults.  It's not Molly so much that I am worried about but the continual disappointment at the way others handle situations with children who have special needs.

The fact is that most people don't often show common courtesy regarding their body language in relation to situations of annoyance.  If any of you have been to a local school board meeting, there is never a shortage of rolling of the eyes or the shaking of heads - all by board members sitting at the BIG table for all to see. This unfortunately is something we run into frequently.  I am amazed and saddened by reactions of adults on a regular basis.  I have been amazed in a positive way by people who are warm and seem to take it all in stride, thankfully most of my friends are like this and were way before the diagnosis.  Pleasant surprises are always welcome, the disappointments are, well.......disappointing.

Unfortunately family is not exempt from showing their displeasure and unfortunately are also vocal.  Diagnosis or not shouldn't you attempt to know a child, specifically a niece or nephew, grandchild or cousin? Knowing what motivates them, their interests and other aspects, also not being on the spectrum comes in very handy when monitoring facial features and body language to see how tone of voice affects a child.  When you raise your voice and scream at a child and their face contorts with fear, that is not a good thing.  My children are terrified by one of their Aunts and her disciplinary choice - screaming to get control.  Another similar reaction from a family member at Christmas as the stimulation was high and excitement uncontrollable - a brother in law who would grimace and roll his eyes at Molly's behavior (also someone who suggested repeatedly that we "smack" the behavior out of her when she was younger).  Don't get me wrong, not all family encounters are bad or full of drama.  Sometimes we have no inappropriate behavior - or we do and a family member will pleasantly surprise us.  I have another sister-in-law (a specific case of no diagnosis needed, just get to know the child!) who has always made an effort to get to know Molly and as such knows to lower her voice and talk with her about things she likes.  She also knows, whether it is innate or researched, to focus particularly on her high interest areas.

It has become increasingly simple to narrow our group of friends to those who sincerely care and don't judge.  We had an incident recently where Molly was interacting with a group of younger kids and didn't stop what was becoming inappropriate (children going into the upstairs rooms at a friends house).  Unfortunately with most social situations Aspie kids have to learn after the fact how they should have handled a specific situation.  This ultimately leaves inappropriately handled scenarios, sometimes very inappropriately.  Social norms are placed on these kiddos and they are expected to act their age.  Which, by the way is something you NEVER say to an Aspie!  Molly took the fall for that one as she was the oldest and how do you explain?  To most it sounds as though you are making excuses, so we offered the learning experience to Molly and had her write a note of apology.

What I would like you to take away from this entry is DON'T JUDGE ME!  Don't judge me in the grocery store when my child is having a meltdown.  Don't look at me like I am a terrible mom!  Do the same for others too - if you see something going on don't give the look of disapproval - you have no idea what is going on with this situation or family.  Maybe the child is not really a spoiled brat and just has issues that you could not possibly comprehend.  Either give the mom or dad a knowing, supportive smile or just ignore and move on.  Comments, glares and stares are unwelcome and uneducated!  No, not everyone needs to know the diagnosis of your child - that should not be the defining factor in how you and your family are treated when a meltdown or some other episode occurs.  We have made certain those who spend a significant amount of time with Molly know the diagnosis and suggested some reading for them.  Sort of getting off track here, but Can I Tell you about Asperger's and All Cats Have Asperger's are two good places to start.  My hope is that by reading this edition of our blog you can find some empathy for the parent attending to the meltdown or other inappropriate action at Costco or the grocery and you don't cast judgment.   Thanks for reading!

The Gift

Yesterday was "shine a light on autism" calling for recognition of the autism epidemic (that's right, it is now officially an epidemic as it affects 1:88) in our country thanks to Autism Speaks.  The Bean in Chi Town was shining with blue light last night - how cool is that?  Merchandise Mart also displayed blue lights at the top of their building for several days. We are very grateful, but we've a long way to go.

It's been quite an adventure thus far.  I'm sure it will be full of even more jokes, drama, laughter, tears, bickering and frustration in the time to come.  You may be thinking that these characteristics are totally "normal" - whatever that means. This is our "normal" and I will be sharing our triumphs, challenges, frustration, pride and more in support of autism awareness and parents and families who often feel isolated and alone.  You're not alone!  I can't tell you how relieved I am to hear/see other's stories and know that these things happen to other people too!  Onto The Gift...........

We have known that Molly has Asperger's Syndrome just going on 2 years.  It's funny, I had always thought she had so many of the characteristics of Asperger's but all of the literature I read discounted having a sense of humor.  The descriptions were universal in stating that a sense of humor (due to the literal nature of their interactions) needed to be absent and Molly is FUNNY!  Unfortunately, this misnomer got in the way.  I will get into the way we presented her with the information down the road - I wouldn't want to bombard you with too much information all at once!  To make a long story short we knew that something was "off" and struggled to find an answer - I was so grateful when we finally had a diagnosis and could actually begin to help her. All of the things we have tried that have worked/not worked will also follow - I've a feeling I won't be running out of anything to share anytime soon!

Molly is often down on herself.  But amazingly she wakes up every morning happy to see the world and most importantly to go off to school.  It has taken her awhile to form a group of friends, but thankfully she has a really nice group and even goes into town with them on Friday's after school for ice cream or whatever the treat of the day is.  If asked what she would change about herself, surprisingly enough Asperger's does not come up, gluten intolerance is the key changeable offense.  I don't know many who have her natural ability to see the beauty where others see nothing.  She is kind, sweet, funny, quite possibly the most empathetic person I know and so smart!!  As with other Asperger's kids people have always been blown away by the early vocabulary (complete, intelligent sentences by 12 mos.).  She also has a natural affinity for math, taking HS algebra as a 6th grader - her homework is something I stay away from.

Early on after the diagnosis I sat down with my other two children and we had the conversation regarding home being your "safe" place.  We had always discussed this in other aspects, but it was important to let them know that their sister may be feeling a bit out of sorts and there is of course the "label" factor.  It was actually several months before I heard my son taunting her and telling her she was reacting a certain way because she had ass-burgers (note: he is not a mean child, they push each others buttons like crazy).  She looked right at him and said "My Asperger's is a gift isn't it mom?!" with a proud unwavering knowledge as she has heard me tell her this repeatedly.  I do believe Asperger's is a gift.  Molly has taught me to look at things differently.  I see the beauty in things I never would have noticed before.  I thought I had patience before, but now I have it tenfold.  Don't get me wrong, there are of course days when I want to rip my hair out and yell at the top of my lungs due to frustration or temper tantrum, but those days only make me appreciate the good ones all the more.  Comments are welcome as well as any questions you may have.  I will be posting weekly and would be more than happy to share any information I have or forward you on to a resource that I find invaluable.  All of these will reveal themselves in upcoming posts.  Thanks for reading!