May 31, 2015

Small Moments in May

We went to a special needs bounce night at our local BounceU.  Brandon's physical agility never ceases to amaze me.  He can hang right there with the big kids.

I got a Master's degree in Elementary Education and accepted a position as a 4th grade teacher!

We started Gemiini (an accelerated reading and language therapy).  I have no idea if it will help, but we will see!  So far I like it.

We were playing in the backyard.  Brandon looked up at me and I saw this:



Because had been doing this...



We went to the lake.  The first weekend of the summer is always hard for him.  He does great on the boat, but back at the lake house he has a hard time in the new (but not really) surroundings and all the people around him.




Brandon loves it when I spike his hair.  He will find the hair gel bottle, bring it to me, and start patting his head.  Then he'll put his head all up in my face to make sure I know he wants me to do his hair.  I love it.

Brandon said some numbers at Speech Therapy and attempted to hold up his fingers!  Yay!




Brandon's new thing is to knock on doors and windows.  Eh...who cares, right?  Wrong!  When his class is outside, he knocks on the other classes' windows and disrupts them.  When he wakes up in the morning he starts knocking on his own door, waking me from a deep sleep...and scaring the crap out of me.  At the lake house, when he woke up at 6:30 a.m., he walked down the hallways and knocked on everyone's door before I could stop him.  (That one was actually a little funny.)

We started a summer playgroup for non-verbal and/or non-reliably verbal kids.  It was so fun.  I met some great ladies, and I was so proud of how well-behaved Brandon was (mostly) and how well he followed directions.

Brandon is still in dance class, and is doing a fantastic job.  It's a night and day different since that first month.





May 25, 2015

The Helicopter Mom

This entry is one that was requested by a reader.  If you haven't heard it before, the term "helicopter mom" is used to describe a mom to hovers over her child in an educational setting.  Just like a helicopter.

There is a difference between a helicopter mom and an advocate.  

We have got to make sure our kiddos get what they need and deserve in order to succeed.  We may annoy the crap out of everyone, but at a time when are children aren't able to advocate for themselves, it's imperative.  Parents and educators need to remember: Fair does not mean everyone gets the same thing.  Fair means everyone gets what they need to succeed.  If Brandon ever had an educator or therapist that didn't appreciate my level of involvement or commitment, I would be concerned.

I've told every one of Brandon's teachers and therapists over the years that I will probably annoy them at some point.  I am on top of it.  I want to know what's going on (good and bad) because that is how I can help my son succeed.  I'm not going to tell his teachers or therapists how to do their jobs (at least not the team he has now...they know what they're doing), but I know Brandon better than anyone.  Not taking my input would be a mistake, and to be frank, unacceptable.

Some things that may seem trivial could have a lot more significance to an autism mom than you might realize.

Take sunscreen for example.

Just the other day (at the start of summer) I said to Brandon's teacher, "I know I'm being annoying about the sunscreen, but did you put  it on him this afternoon?"  Brandon is very fair.  I don't want him to even get a hint of a sunburn.  If he does he will be uncomfortable.  So, things that would normally bother him but not cause a meltdown, would seem more devastating to him because he's already irritable.  The more tantrums and meltdowns we have, the slower his progress.  Brandon's teachers get it.  They're awesome.  Me being borderline obsessive about the sunscreen is not me being a helicopter mom.  It is me making sure Brandon has his best chance.  It seems so minor, but the reality is that a sunburn could drastically change our lives for a couple days.

I was sure to explain this reasoning to his teachers (even though they probably already knew) because I do want to make sure they understand it's not about me being the boss or being in charge.  It's all about what is best for Brandon.  So what I'm saying is I'm still going to be annoying about things, but letting his teachers know why helps to foster a positive working relationship with them.  The relationship they have with me is a huge factor in Brandon's success.  We are partners.  They will always get the respect they deserve from me.

I have been incredibly fortunate that the teachers and therapists around Brandon are fully committed to his success.  I know of other people who do not have this experience.  Parents who that don't feel that support are in for the fight of their lives...fighting for the most important thing in their lives.  Can you imagine what the stress of that would do to a person?  I pray that I never have to find out.







May 16, 2015

Autism: What Teachers Should Know

This list is one of the best I've read.  I agree that punishments are not the most effective behavioral strategy.  What I want to add is that natural consequences are.  

For example, if a child is playing with the water in his cup at snack time instead of drinking from it, the natural consequence would be to take the cup away.  This is much more effective and appropriate than a time out, loss of iPad time/recess, "clipping down," etc.  Any time a natural consequence can be implemented, it should be done in lieu of a "punishment."  This is with children in general, not just those with autism.


12 Things I'd Like Teachers to Understand About Autism

By Lisa Smith

https://www.autismspeaks.org/blog/2015/03/09/12-things-i’d-teachers-understand-about-autism







May 11, 2015

What Makes it Autism?


Spectrum, n. 
1) used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points.

Recently, a friend of mine asked me about how a person is diagnosed with autism.  She is so awesome for asking and wanting to learn more.  It makes my heart happy :)  She knows what autism is in general, and admits that with the spectrum being so wide, it's confusing.  On top of that, she had a family member misdiagnosed with autism.  Can you imagine her confusion about autism at this point?

Let me get technical on you for just a second since this is a educational post.  The DSM-IV stands for the Diagnostic and Statistical Manual-Fourth Edition (DSM-IV).  This is what is used by psychologists for diagnosing autism.  Also, Asperger's is no longer diagnosed according to the DSM-IV.  Of course, if a person was previously diagnosed with Asperger's, they still have it.  But now those characteristics fall under the umbrella of autism spectrum disorder.  This inevitably widens the spectrum from our viewpoint, as we just use the one term now: autism spectrum disorder.  (Also, autism is not capitalized.  Gramatical fact there for you...look at all the educating I'm doing!)

Somewhat recently, someone said to me, "Well, I just think people are over diagnosed with autism."  This person really didn't have any basis for this, so that was annoying.  But again, there is confusion about what autism is.

There is no medical test that will tell you if a person has autism.  It's technically a judgment call by the doctor based on behavior, development and the criteria for autism.  So, I am not saying doctors are perfect and never misdiagnose a quirky kid with having autism.  That said, I have heard too many stories that moms and dads are made to feel that it is all in their heads.

There is a saying, "If you have met a person with autism, then you have met just one person with autism."  You might have a 6-year-old savant who can play a piano like this (click here).  Or, you might have a person with autism who cannot speak or communicate, and has to live in a residential care facility for his/her own safety.

People with autism have problems with social, emotional, and communication skills.  Brandon, for example, is almost four years old and is nonverbal.  He is now beginning to repeat words when prompted, and they are usually unclear.

Here are some of the characteristics of autism.  Remember, that people with autism do not necessarily do every one of these things.  Even if two people with autism do share a characteristic, the severity may be completely different.
(Source: CDC.gov)
  • not point at objects to show interest (for example, not point at an airplane flying over)
  • not look at objects when another person points at them
  • have trouble relating to others or not have an interest in other people at all
  • avoid eye contact and want to be alone
  • have trouble understanding other people’s feelings or talking about their own feelings
  • prefer not to be held or cuddled, or might cuddle only when they want to
  • appear to be unaware when people talk to them, but respond to other sounds
  • be very interested in people, but not know how to talk, play, or relate to them
  • repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language
  • have trouble expressing their needs using typical words or motions
  • not play “pretend” games (for example, not pretend to “feed” a doll)
  • repeat actions over and over again
  • have trouble adapting when a routine changes
  • have unusual reactions to the way things smell, taste, look, feel, or sound
  • lose skills they once had (for example, stop saying words they were using)
There are 15 items here.  When Brandon was diagnosed with autism at just two years old, I could have checked off 11 of them.  There was no doubt about his diagnosis, and there is still none.

He will always have autism.  He may get to the point where it is very hard to tell that he has it.  He may not.  It is unknown at this point.

Most people just say autism, which short for autism spectrum disorder, but the key word to keep in mind is spectrum.








May 6, 2015

Self-Injurious Behavior: Yep, That's a Thing

One of the things that most deeply upsets me is Brandon’s potential for self-injurious behavior.

He’s always been one of those kids who would take a hard tumble, and hop right back up and play.  He has a high pain tolerance.  When he is very upset, sometimes he will hurt himself.  He will hit himself, bite himself, scratch himself, or take his knuckles and knock himself in the head...hard.

Thankfully, this doesn't happen very often and we work through it when it does.  It's extremely upsetting to know that my son could be that frustrated...that the only way he knows to release that tension is to hurt himself.  My heart hurts for him.  I would take that pain from him in an instant if I could.

I'm writing this quick post because it's on my heart right now, and I feel like it's one of many things that people don't know about autism.  Self-injurious behavior is a thing.  I have a lot of readers who come to my blog to learn more about autism and to understand what this world looks like in everyday life.  Just keep in mind that not every child on the autism spectrum has self-injurious behaviors.  Some have none.  Some have a lot more than Brandon.  This is just a little glimpse into our experience.






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