What I Want You To Know

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.*

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7 thoughts on “What I Want You To Know

  1. Excellent points! I cannot tell you how many times I have spotted an undiagnosed child with autism in a school. When I point it out to the teacher or administrator, I have been told, “that child doesn’t have autism—he/she can talk”

    Keep up the good work!

  2. Such a good post for teachers, nurses and other healthcare workers, and Sunday school teachers. For the most part, parents know their children and we should partner with them to do what is best for the children. It stands to benefit everyone that way.

  3. Hi Julie,
    Great points. I have to say at our last IEP, just a week before we decided to homeschool our son, the speech therapist said he didn’t need therapy for stuttering because my son told her it didn’t bother him. So, now medical necessity for therapy can be determined by a single answer given by the child who is going to say what, “Yes, my stuttering bothers me.” This in conjunction with his psychiatrist and summer speech therapist all recommending therapy for him during the school year. I have to say when we mentioned this to the new virtual school we are having him attend, they were appalled. Day by day we go down this road, learning and teaching and forgiving too.
    Patti

  4. I totally LOVED that list!
    One of the things that we come up against often is the assumption that because my son is verbal that he can communicate effectively. SO no the same thing!

    • Thank you! One thing I’ve learned on this journey is that if I feel this way, others must as well. My hope is that I can share with others & give those that don’t have a child with autism a little bit of insight into our world. Blessings to you & your son!

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