Tuesday, November 25, 2014

Help autistic kids during the holidays

This is a blog post from my Educational Technology Blog Plugged In Edu.  I posted it last year and it's written to teachers but it's a good reminder...

This is a non-technology post.  I am the mom to an autistic son.  He had a meltdown at church when presents began appearing under the angel tree.  This got me thinking about how we, as educators, could help these students enjoy this time of year.

B-man loves the lights
It’s the cray, cray, craziest time of the year!  The weeks between Thanksgiving and Holiday Break move at  breakneck speed.  In my last post on Getting Smart, I wrote about how you can survive during these weeks.  But what about your students?  How are they handling it? Specifically, your Autism Spectrum Disorder (ASD) kids?  What can be done to help them deal with the change and help them enjoy themselves? Some of these things you already do, they are just good classroom management strategies, but it may help to look at them through an ASD lens.

Let students and parents know in advance about schedule changes.  A sudden change can cause ASD kids a great deal of stress. You probably already post this on your teacher website and include it in your newsletter.  Consider making a copy of the week’s or day’s  schedule for a special needs student’s desk. This will help them track what’s happening in class and what will be different.  Parents are your allies in this as well. Send an email the afternoon before to remind them of any changes coming. They can work with their student that evening to help prepare him or her.  

If your class or school is participating in a community service project, your ASD student may be more receptive if the directions are concrete.  Instead of saying “Make a holiday card for someone at the nursing home.” Tell him or her “Please make a Happy New Years card for Bob.  He lives at the nursing home where the cards are going.” This may require a phone call to the nursing home to get specific names but will help those black and white thinking students.  If you are collecting toys for an agency or doing an angel tree, let your student name their angel.  It doesn’t matter what the name is, it’s just easier for an ASD student to shop for Billy, age 10 than male, age 10.

The class party can pose some interesting challenges.  If at all possible, let your autistic students take a sensory break before the party begins.  This could be as simple as telling all the students that you are polar bears and you need to bear crawl to the North Pole for the party.  Then all kids have the opportunity to work some wiggles and excitement out.

You will need to coach your student before any gift exchange.  Privately talk about how to respond if he or she doesn’t like the the gift they are given.  Practice a script of what to say.  Remind him or her that they don’t have to say everything they think.  Also practice body language with these scenarios.  Coaching may also be helpful in regards to food.  Help your student know how to react when they are served food they don’t like or if they eat something that is not tasty.  

A party schedule can also be helpful. It does not have to include specific times but a general rundown of what will happen and in what order.  This will calm most ASD students and let them enjoy the party more.  

Proximity can also be helpful during the party.  By now you probably know how your ASD student prefers to be soothed.  Keep your student close by so you can soothe and problem solve if he or she becomes upset.  Creating a cool down plan before the party begins will help avoid a scene during the party.  

This is a fun time of year! With a little planning, you can insure all students have fun.  What other strategies do you use this time of year? Share with us in the comments.

Monday, November 17, 2014

Autism in the news

In the past couple of weeks, 2 events have the autistic world buzzing.  One was Jerry Seinfeld's revelation that he thinks he's on the autism spectrum.  The other was the tragic death of London McCabe, who's mother threw him off a bridge in Oregon.

My brain is so full and thick.  I'm not sure I'll be able to get my brain on this page but I'm going to try.   The main point that keeps swirling in my mind is - someone else's success is not your failure.

The idea that Jerry Seinfeld may be on the spectrum and is wildly successful does not diminish the struggle of parents with an autistic kid.  Or any kid for that matter.  Jerry's successes and struggles are his own. They don't effect you in any way (unless of course you're Mrs. Jerry Seinfeld or kiddos de Seinfeld).  Everyone has their own journey and their own struggles.  Jerry's success does not diminish your child's success or struggles.  What Jerry's announcement does do, in my opinion, is bring autism into the news again - in a positive light. All children are served when their differences are de-mystified.  


The idea that your child is non-verbal with a wide variety of struggles does not give you the right to take their life.  Period.  End of story.  London's story does the opposite of Jerry's.  London's story casts a heavy fog around being a parent of special needs kiddo.  "It's crazy town over there.  Let's move to the other side of the street."

London's mother (I refuse to use her name) blogged about the struggles of caring for him.  I have no visited her blog but I have read excerpts on news sites.  My immediate thought after reading her words is that she was not able to find London's specialness.  She was not able to love him the way he was.  She was not able to tell the world "Suck it.  This is my kid and I love him and I don't care if he looks weird to you."  She was not able to feel London's love for her.  And that breaks my heart.  For her and for London.  Because feeling love is so essential to human beings.

What London's mother did is not to be excused but also brings about another issue.  The stigma of mental health disorders.  She was clearly mentally ill.  One news story references is family members talking about her visiting her counselor and the need to increase her medication.  It made me wonder, if her family knew she had these type problems, why didn't they seek help for her.  Why didn't they stand in the gap for her? She had previously attempted suicide and posted a video about wanting to do so.  As a society we must stand up and say, "I will help.  I may not know how to help but I will try.  I will protect you and your children."

I do not mean to imply for one second that caring for a special needs child is easy.  I remember the time before B-man spoke.  We didn't eat out.  I was worried about what people thought when he melted down in public.  I was in a constant state of stress and anxiety.  It's taken a long time for me to learn to relax again.  It's still very hard to relax, it's actually quite a bit of work.  But I loved him no matter what and I could feel his love for me when he could not speak it.  You do have to make changes and sacrifices in order to do what's best for your child.  My other boys 'miss out' on some things like longer vacations or going/staying places as a family (we divide and conquer a lot).  But what we get in return is a glimpse into another world.  A world that is different but not worse than ours.  A world of wonder and beauty.  We have the joy of B.  My boys are learning kindness and tolerance and love in the trenches.  He is worth it.  London was worth it.  Jerry is worth it.  You are worth it.

You can read more at Diary of Mom  Expression is Not Existence and on Psychology Today in John Elder Robison's article Jerry Seinfeld and Autism (which I also found through Diary of a Mom - I'm totally a Diary fangirl)

Wednesday, November 12, 2014

The True Story of Robo-Turkey

Last week a paper came home from Kindergarten.  A family project!  Make a turkey! How exciting! (are you feeling the sarcasm?)

I have an internal rant about 'family projects' that I'll spare you from.  I don't like them but I understand that some families need a reason to interact with each other.  We don't.  We've got interacting down to a science (more sarcasm because everyday is learn and relearn around here).   I have been adamant with all 3 boys that I will help with any project but I will not do their projects.

This stance is unpopular and hard to stick with when you see all the extra awesome projects posted on social media or at school.  I harbor no ill will for parents who give more help with projects, I'm just not one of them.  I love to talk a project through with the boys.  I will give my opinion on what I think they should do.  I'll take them to Michael's and buy all kinds of things.  I have been known to mold clay under the direction of my oldest.

Anywho...I completed my portion of the turkey project. I mounted it on poster board and cut it out.  I honestly thought B would love coloring the turkey.  He loves to color and paint.  I could not have been more wrong. He wanted to paint on the left over poster board.

Do you want to paint your Turkey?  NO!

OK buddy, let's color the Turkey.  NO!

What do you want to do with the Turkey? Nothing. I want to leave it white.

I don't think that's going to work. Let's color it.  NO!! I'M NOT COLORING IT OR PAINTING IT.  IT WILL BE WHITE (mini-meltdown).  Take a breath, we'll work on it tomorrow. 

Tomorrow comes and the Turkey is due the next day.  Again, there is screaming and gnashing of teeth and hitting.  We try to remain calm.  B declares that there will be no paint or arts and crafts materials on the turkey.  He asks me what I would do if I needed to decorate a turkey but didn't know how to.  I told him how I would color the turkey.  My suggestion is ignored.

Finally, he declares - ROBO-TURKEY!

Now we're cooking with gas, I can do Robo-Turkey!  I get out all the gray, silver, light purple, and black crayons.  I suggest coloring the turkey all these shades and then putting dots to look like screws where Robo-Turkey is put together.  His face tells me this is not a good idea.  As does the fact that he's hiding under a kitchen chair.

At this point, I exit stage left to take SB to football practice an hour away.  Ryan steps in.  A trip to Target is promised and Robo-Turkey is colored.  Life moves along.

But that night, B's book from school is No, David! Ryan reports that the evening could have come straight from No, David! And that breaks our hearts. Something that was supposed to be fun and provide a bit of lovely family time turned into a mess of David proportions and cost us $20 in Legos.
Today I'm questioning my choices.  Should I have let him leave it white?  Was it worth the struggle?

Part of me thinks yes.  He has to learn that he has to complete tasks that he does not enjoy.
Part of me thinks no.  Why do I have to keep trying to shove my square peg into a round hole?

I, of course, know the answer to that one - because he has to go to school and school likes things a certain way.  I'm an educator, I get it.  I want school to be a place that all kids can complete assignments in the way that's the best for them.  I also know the reality of that is crazy and messy and difficult to manage.  It's hard to send home a paper that says "Make a turkey any way you'd like".  Most people don't like that, they want guidelines and patterns.  I totally get it, I've been there teacher-friend.  I am there.  I can not imagine managing 18-22 5 and 6 year olds all day long.  I understand that those circumstances call for structure and patterns.  Kids love structure and patterns.  B needs structure and patterns.  But, I struggle with making him do a 'non-preferred' task when there's a 'preferred' way to get the same or similar outcome.

I think B-man would have loved to get a blank piece of posterboard and paint his own turkey.

Monday, November 3, 2014


Yesterday's post about Pump It Up has me thinking about milestones.  Kids have milstones, large and small.  When you have a kiddo with development disabilities, failing the meet milestones may be your first red flag.

There were times when milestones were few and far between for B-man.  We've worked hard on certain things only to see no progress.  This is beyond frustrating for everyone involved.  At these times, we've found the best strategy has been to walk away, stop pressing the issue.  Often times, B sneaks up on us.  He just starts doing something that had seemed impossible or frustrating in the past.
Speaking was one of those things.  B worked with an ECI (Early Childhood Intervention) Speech Therapist for 9 months.  When I say worked, I mean WORKED.  Like it was our job.  All of us were frustrated by his lack of progress. When he aged out of ECI at 3 he had, maybe, 20 words.  There was a lot of screaming and throwing things.  B was frustrated because he couldn't communicate with us.  We were frustrated that everything we were trying wasn't working.  I bet that speech therapist was happy to see B-man age out.

He turned 3 in June, aged out of ECI, then had no therapy all summer.  Right before schools started he had an explosion of language.  His PPCD (preschool for children with disabilities) teachers were amazed at his language skills.  They had seen his initial testing and expected a largely nonverbal little boy.

I want to celebrate B's hard earned milestones.  Here are some that he's hit recently

  • Riding a big wheel and a bike - holy miracle of muscle planning!
  • Taking a shower - he used to scream bloody murder, nights are so much easier
  • Dressing himself
  • Safely playing away from adults
  • Walking into school alone - this was big, we had no idea how he'd do going into school without Z.  It does help that he gets to go in early and in the back since I'm an employee but it's still HUGE!
  • Being able to sit in the gym in the morning and wait for school to start
  • Telling us "PE makes me nervous" - labeling emotions! expressing emotions!

Sunday, November 2, 2014

Pump It Up!

Yesterday was a big day for B-man! He was invited to a birthday party by a set up twin boys.  The party was at Pump It Up, an indoor inflatable park.  I thought that this was B's first non-family birthday party but he reminded me that he went to a party at the pool across from our house for another set of twin boys.  But he had never been to Pump It Up.  He was so excited!

We shopped for the boys at B's favorite store - Target.  B wasn't sure what to get them until he saw Mixels. Mixels are some kind of Cartoon Network/Lego mash up.  The Mixels didn't come in a big set, just one small character so I tried to convince B to choose something else.  Nothing doing - so he choose 3 Mixels for each boy.  Of course, we had to get B a Skylander.  A small price to pay to leave Target happy.

B separated each boy's Mixels into bags and even wrote on each card.  He was ready to go!

Pump It Up has 2 rooms.  You spend 30 minutes in each room. The first room had an inflatable with basketball hoops and giant sticks to joust with American Gladiator style (the original one, that is). B had a lot of fun in there.  Then he moved on to the giant slide.  The catch is that he had to climb up to the top first.  The climbing portion had red footholds and black hand holds.  B would get up the first level then fall down.

But here's the awesome part - he didn't meltdown!  He would take a deep breath and try again!  I almost went in once to help him but I decided against it.  Eventually, the twin's dad showed B how to get to the second level and to the top.  This blur is B going down the first time.  The next picture is him going down the 2nd time (I used Still Shot, an awesome app that lets you pull still shots from videos. Sometimes it's the only way to get a good picture of B-man)

The second room was not so awesome.  They played for a bit then started a glow party.  The kids got glow necklaces and the lights went out.  B did well for a little while.  He started playing a video game with other kids.  It was a kinect game where the kids 'hit' balloons and they popped on the screen.  B had a hard time understanding what to do and he didn't handle losing very well.

He got upset and asked to go outside.  Yes, you read that correctly. B ASKED. TO. GO. OUTSIDE. Pre-meltdown.  He was upset but he had not lost it yet.  So we hung out in the lobby for a little while.  He wanted to try again after about 10 minutes.  And, wouldn't you know it, he went back to the game and became upset again.  This time he decided he wanted to go home.

He was pretty upset so we didn't say goodbye.  I texted the boys' mom and let her know.  When we got in the car, B was very adamant that he 'hated Pump It Up' and that 'we should never ever go there again'.  

I told him how proud I was of him for the way he kept trying in the first room.  I told him that I saw him work hard to get to the top of the slide at first.  Eventually, he said he did like the first room but not the second.  I said that was ok.  Things don't have to be all good or all bad.  Things can be part good and part bad.

This morning B told me that he'd like to have his birthday party at Pump It Up.

Yesterday was so full of win for my B-man!!

Monday, October 27, 2014


B-man is supposed to see his developmental neurologist at Children's every 6 months.  He saw her in the Spring.  Ryan tried to make his next 6 month appointment at the end of that appointment but her schedule wasn't "open that far in advance".  So, I'm supposed remember to call and get an appointment when it gets close to 6 months.  The first problem is that I never remember.  Then when I do it's impossibly hard to get a hold of anyone.  If anyone from Children's is reading this: your new online/app system does not work.  It says that email requests for appointments will be handled in 24 hours.  I have yet to have my email request even handled.  I end up having to call someone. I hate calling people. Thankfully, Dr. Golla has moved from the general neurology clinic to the Center for Autism & Development Disabilities. CADD is not as busy as general neurology and I was able to get someone on the phone with the first call.  When you call general neurology, you get a voice mailbox which warns you not to leave a second message because you'll just be slowing things down.  Anyway, I got someone on the phone and was told Dr. Golla could see B-man in May.  MAY!?! That's a year between appointments.  I point out that he's supposed to be seen every 6 months.  We get a consolation prize - an appointment with a nurse practitioner.  I thought this would be ok because usually, the doctor pokes in or is around. I. was. wrong.

Facepalm designed by Edward Boatmanfrom the Noun Project
When we arrived at the CADD, the waiting room was empty.  Definitely different from general neurology.   We are taking back fairly quickly.  Also different.  We have to answer the now standard Ebola questions.  The medical assistant balked when I answer that yes B-man has had a fever and has thrown up lately.  His allergies are messed up.  His sinuses are draining and that causes him to throw up.  He coughs.  She asks if he will wear a mask.  I say maybe then I put one on too so B will keep his on.

When the NP comes in, she is a cheerful older lady.  Brennan doesn't want to answer her questions at first but then warms to her.  She has print outs.  One form to sign to ask the school to send his latest ARD paperwork.  The rest presumably his records.  She writes on them.  The computer is unused in the corner.  She asks about his sleeping habits.  She says some kids, more severely autistic kids,  take a medication to help them stay asleep.  I can't remember the name of the medicine.  It's not written on his check out paperwork.  She asks about school.  All standard stuff.  Do we have any questions?

Ummm yes we do! What about his past MRIs showing 'spots'?  Do we need to do another MRI to check on the spots?  It's been a year since his last MRI, are we the only one concerned with these spots.  Yes, yes we are.  She has no idea about the MRIs.  She'll have to ask Dr. Golla. She'll get back to us.

I ask, can you show my husband his MRI scans on the computer? He hasn't seen them.  She tries.  She shows us scans that don't look like the ones I remember seeing.  She doesn't understand my concern.  I can very clearly remember sitting in the room at the general neurology clinic with an intern looking at the first MRI and the second side by side.  Those pictures are done in slices.  They start at his chin and build up.  I very clearly remember seeing parenthesis shaped blank spaces on those films.  The ones we saw today don't look like those.

So either I remember incorrectly or we saw the wrong films.  I don't know what to think.  What I do know is that today was a waste.  The whole point of having a doctor is that someone knows you.  That you continuation of care.  Today we saw someone who had no idea who Brennan is or what our concerns are.  For that matter, I don't know that Dr. Golla does either.  But the problem is that there are very few developmental neurologists.  You kinda take what you get.  At this point, I don't if we need a developmental neurologist.  I need someone to look at B's brain scans and tell us about them.  What I do know is that I am frustrated.

Monday, October 13, 2014

Spreading our wings

Bman is a wanderer.  He will disappear in the blink of an eye.  As you might imagine, this makes for lots of anxiety for this momma.  He needs to be within an arms reach at all times.

Last week we spread our wings a little.  On Monday, we all went to the State Fair of Texas.  We had never been all 5 of us together.  It was a great day.  The boys loved the rides and food.  It was just the 5 of us hanging out all day.  The boys (Ryan included) teamed up to win a giant Scooby-Doo.  I don't think I've ever seen a bigger smile from Bman.  Not only getting what he wanted but knowing that he broke two of the plates that helped earn Scooby.

SB's game Thursday was away.  It was actually at a field we've played at in our select football days.  SB played tournaments there.  Always in December and always cold and rainy.  Bman had never been to the field because he's gotten to stay in from the weather.

Usually, he stays in the stands and plays with whatever toys are in his bag.  He did that for a little while but then he asked if he could go downstairs and play with the other kids.  One of my students, and a good friend of Sam's, was down there with some of the younger kids.  I asked if she could keep an eye on Bman.  She said she would.  I let him go down to play. We did have a minor discussion about taking his backpack full of Skylanders down but he eventually went down without them.

He played, Ryan and I watched the game and took turns playing "Do you see B?"  He survived.  He did get lost.  He played well. Sometimes playing with the other kids, sometimes alongside them.  But the point is that he was out of my reach.  And we both survived.

We're both growing.

Saturday, October 11, 2014

The only constant...

is change.  I've heard this a million times. I've said it a million times.  But I'm living it. Actually, we are all living it but things are changing around here.

As you know, I'm a momma of 3 boys, one of them an autistic 6 year old - Bman.  Lately I have had a tug on my heart for other mommas of autistic kiddos.  I want to be a resource for families.  I've had mommas come alongside me and love me.  I want to do the same for mommas of autistic kiddos.  I want them to know that they are not alone and that they are loved.  I'm not an expert but I am living smack in the middle of autism and I know how to love.

I don't know what this will end up looking like.  I am working on writing a Bible study for MAKs (Mommas of Autistic Kiddos).  I really don't know where to start.   But what I do know a couple of things 1. I love to write (and I think I'm okay at it ;).  2. people love to hear Bman stories.

So, that's where I'm starting.  I'm going to tell our stories - good, bad and indifferent.  I'm going to focus on our part of the story, not his school's part, not anyone else's part.  It's our life and our story.

I don't want to make this a place to complain or gripe.  I want to make this a place to tell our story, reflect on what we've learned, what we can do better and offer a support to other families.

Please join me in praying for God's direction in this endeavor.  Pray that he will guide my steps and to be of service to Him and families dealing with autism.

And if you know of any MAKs, send them my way!