I was taught at a very young age that words have consequences. This is a concept that we have really been working with the girls on as well.  Like most siblings, Skylar & Hailey can really get on each other’s nerves.  Don’t get me wrong, they love each other and when they do get along it is so very sweet.  Hailey especially has a hard time being patient with Skylar, gets easily frustrated with her, & says words that are unkind.  We’ve tried to explain to her that if she speaks rudely to Skylar then she better not be surprised when Skylar doesn’t want to play with her.

Skylar, like most individuals on the autism spectrum, is very matter of fact.  She has no filter and says exactly what she is thinking.  Last week Hailey was clearly annoyed with Skylar and kept telling her she was doing something wrong.  Skylar stopped what she was doing and said:  “Hailey, you are rude!  Get away from me!”.  As you can imagine, Hailey was so mad and replied “Skylar you are rude!  I can’t believe you said that to me!”.  I was just in the next room and heard the conversation take place.  Hailey came to me clearly upset.  This provided us with a very teachable moment.  It allowed us to remind Hailey about how her words have consequences.  She had repeatedly spoken unkind words to Skylar and in return her sister now did not want to play with her at all.  It is my hope that Hailey learned something from that experience and will think before she speaks unkindly to Skylar in the future.

Unfortunately, not everyone gets the chance to learn such a lesson in a protected environment like that of your immediate family.  As adults, the words we speak also have consequences.

When I first moved to Prescott in April I was invited to join the neighborhood Bunco group. Bunco is a dice game. You rotate tables and eventually get to sit and play with almost everyone there.  I’ve played in many groups through the years and have really loved it.  I was excited to be invited to this group as I knew very few people in the area.  This is our first military assignment that we haven’t lived on or near a military base so I was anxious to get to meet people.  I know that all parents long to have contact with adults after having been with your kids all day.  As a parent to a child with autism, I look forward to this night out once a month where people don’t speak to me in movie lines.  For this one night I’m not Mrs. Coryell, the “Captain’s wife”, or Skylar and Hailey’s mom.  I am Julie.  Don’t get me wrong, I love all those other identities, but I also love being just Julie every once in awhile.

A few weeks ago was our monthly Bunco night.  I found a spot in the kitchen where the appetizers were and where we normally chat for about 30 minutes before starting to play.  The ladies know that Skylar has autism and they always ask me about the girls and how they are doing.  This night was no different and we openly discussed autism and epilepsy (since Skylar has both) for a few minutes and then we started playing.

Towards the end of the game I was sitting at a table with 3 other women and we were rolling for 3’s.  None of us were rolling a 3 at all and I said “Wow!  I can’t believe that none of us are rolling 3’s.”  Then the following transpired:

Lady 1:  This is so stupid.  I can’t believe we can’t roll a 3.  We must be the special table!

Lady 2: Ya, the special ed table!  Ha Ha!  We are the special ed table!

Lady 3:  Ya, we are special ed!  (Cackling in laughter!)

I seriously could not move!  I couldn’t believe that these grown women were making fun of special ed people.  And in front of me for that matter!  I could not even find words to say, as I was so stunned that this had just transpired, especially after our conversation in the kitchen earlier.  I was so upset, but I knew that as soon as I opened my mouth, the tears would start rolling.  The round ended and Ladies 2 & 3 moved on to another table.  My sweet friend McCarthy sat down at my table for the next round and immediately sensed something was wrong.  I shared with her what had happened and all she could say was “Are you freaking kidding me?”  The game ended about 10 minutes later and we left as fast as we could.  Poor McCarthy had to listen to me vent the whole way home.

Last night the gal who coordinates the Bunco group called me.  She was absent that night and she called to touch base with me about next month’s group.  I told her that I would no longer be playing and explained the situation.  She felt horrible about what had happened.  The following thoughts are what I shared with her.  I’m condensing them down to bullet points.

-It infuriates me when people make fun of a group of individuals that have something wrong with them that they can not control, in order to get a laugh from others.  (I think it is wrong to make fun of people anyway, but this really makes me mad!)  There is a term for this, it is plain and simple…BULLYING!

-I was so disappointed that I gave up a night with my girls to deal with this kind of ignorance!

-I absolutely HATE that I didn’t say anything at the time, but I have been so emotional lately that I knew that if I said something it would not be good!

-The lady who initially made the comment is a realtor here in town.  Her words had consequences that she doesn’t even know about.  Because she made that comment, I will NEVER pass her name along to anyone I know that needs a realtor.  Anyone who knows me knows that I love to pass along business to those who provide good service (whether that be those that sell a product or professionals that we have utilized).

This experience has taught me more than ever that I need to continue working with my girls on the fact that their words have consequences.  I want both Skylar and Hailey to think before they speak.  I want them to know that it is never ok to get a laugh at the expense of someone else.  I especially want them to know that I love the both of them so very much & even though society might see them as “different”, I think they are exceptional human beings who have a tremendous amount to offer!

Love to you all!
JuJu

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently in the 20′s.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*

So this past week was a real challenge!  Right after I shared my post about guilt creeping in we had an incident at school.  Skylar has a long term sub in her class until at least January and one of the assistants had a death in the family which led her to immediately retire.   All these changes have really thrown Skylar for a loop.

Tuesday morning I found a note from the sub that I deemed “very snarky”.  The sub commented that Skylar is a “chronic arguer” and that she is “smart enough to overcome any difficulties that might come her way”. Really??? Chris was about to leave town for a work conference but we both knew that we needed to address this with the prinicipal immediately.  Let me say that we could not love Skylar’s principal any more than we already do.  For starters, she’s a University of Arizona graduate so obviously she is brilliant!  Seriously though, she is completely approachable and we were open with her about our concerns with this substitute and the comments she made.  We found out from Skylar that one of the incentives that she receives when her work is finished, computer time, had been taken away.  You can imagine how poorly this effected Skylar’s attitude towards school.  The principal assured us that they were working hard to get the permanent staff in place to regain stability for the classroom.

Tuesday afternoon Skylar came down the hill after school and she looked defeated.  I learned from both Skylar’s communication journal and from her that she had been put in a situation that had compromised her safety.   I understand that there will be personality conflicts, but I will obviously not tolerate any situations that put her safety in question.  I kept her home on Wednesday while the matter could be investigated and I am pleased with the steps that the principal is taking to ensure that nothing like this ever happens again.

This week’s events have really brought to the forefront an issue that we have been struggling with for a long time.  That issue is Skylar’s verbal ability.  Skylar tends to be more verbal than most of the individuals we meet with autism and, unfortunately, because of this the expectations that some individuals have of her (whether they be academic or behavioral) are unrealistic.  We are all for pushing Skylar to be the best that she can be, but we completely accept the fact that there are many things that she really struggles with and no matter how hard we work at it, that isn’t going to change.  Moving here to Arizona has been one of the most challenging transitions we have had yet.  I honestly think that in a social setting she functions just high enough to get by.  It isn’t until you sit down with her and really watch her or ask her questions that it becomes apparent that she is not a neurotypical child.

We experienced this just recently with one of the professionals that had observed her in the classroom setting.  Before her 3 year reassessment a comment was made that led us to believe that she questioned Skylar’s autism diagnosis.  When we met a few weeks later for her IEP the same professional remarked several different times during the meeting “Wow, she is REALLY autistic!”  Of course both Chris and I were thinking “You’re not telling us anything we don’t already know.”  We both chuckled as we got into the car after the meeting that this gal seemed genuinely shocked by the results from her testing.

So here is what I would like teachers (special education and general education alike) or individuals that are around children on the autism spectrum to know:

-Yes, I know that my child is smart!  Try not to sound so shocked when you realize this.  Autism does not mean unintelligent.

-Please don’t talk to me as though I don’t know anything.  I most likely have read more books and research about autism than most of you.

-Change is difficult for a lot of people.  Change for an individual with autism is exceptionally hard.   If you have to make a lot of changes, don’t implement them all at once.  Baby steps!

-If my child is “whining/arguing” it is most likely because something is really bothering her.  Take a step back and evaluate the situation.  What has changed?  Don’t assume she is misbehaving.

-Verbal does not mean typical.  Just because my child can tell you a little about her self and quote just about every movie line she has ever heard, she struggles with many basic activities of daily living.

-Patience is key.  If you aren’t patient, you should NOT be working with individuals with autism or any special needs for that matter.

-Each individual with autism is different.  Just because something works for a child you’ve worked with before, doesn’t mean it’s going to work for my child.  There is a great saying:  If you’ve worked with one person with autism, you’ve worked with one person with autism.

-Communicate appropriately.  I am totally approachable.  I want my child to be successful.  Most importantly I want my child to be happy.  We know our child better than anyone else & we are more than willing to share strategies that you could use in the classroom.  I know not all parents are the same, but I know so many amazing parents that have children with autism/special needs and they want to help.

I hope these thoughts have been helpful.  As always, feel free to pass along this information if you think it might help someone else.  Ultimately, my prayer is that my daughter will live in a world that is more understanding and accepting of who she is.

Thanks for reading,

JuJu

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently in the 20′s.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*