Autism Understanding & Acceptance 2014 Day 12: Kicking Developmental Milestones to the Curb

For those of you that followed my blog posts last year, you must have known that my irreverence would show up again.  At least it didn't show up on a Sunday like it did last year.

Letting go of the expected developmental milestones was a huge relief for me.  Thinking back, those Early Intervention years (for T, ages 15 months to three years) were an unbelievably stressful time.  I really believed that if I just spent more time with him, engaged him with the right activities, and did everything "right", then I could make the impending and ominous specter of autism go away. (As if.)  As more months passed by without meeting these milestones, the more frantic I became inside.  I probably was close to some sort of nervous break.  This culminated in a profound moment which I will post about later this month.  Stay tuned.  

After then,  I let go of those expectations.  Kicked the Developmental Milestone Timelines charts out the door.  All that mattered was that he continued to make forward progress.  The specific months & years simply didn't matter anymore.  Yes, he needed to make progress, but the timeframe was increasingly irrelevant.  He wasn't meeting them and it wasn't due to some failure on my part.  It was because there was something very, very different about my boy, and I wasn't going to let those *bleeping* charts make me feel bad about him or myself anymore.  

Autism Understanding & Acceptance 2014 Day 11: Shield of Protection

I could also call this post "Learning not to give a damn about what others think".

Full disclosure: my personality type cares very, very deeply what other people think of me. Ridiculously so.  Being above reproach, liked by everyone, having everyone's approval = my undesired but undeniable underlying motivation for much of what I do.  

This gets tough when you have a child with autism.  You may think this post will be about wanting people's approval when we are out and about with T in public, but it's not really.  It's about other autism parents.

Yep, I just went there.  

Do understand: I have a few fellow parents of kids with autism who are very close friends and confidents.  But one of the most important things I have had to do to keep my own sanity is to put up my Shield of Protection against other fellow parents.  I will let it down only after several conversations, and only when I have discovered that she or he does not have all the answers or have found THE cure or knows how to fix T.  Believe me, the autism community is divided, and there is very little if any middle ground.  

And I'm stuck in the middle.  Stuck because I don't believe that vaccines alone cause autism.  Stuck because I do think it is nuts to give so many at the same time.  Stuck because we've learned that the special diets DON'T work for every kid.  Stuck because I do believe some kids do improve on special diets and supplements.  Stuck because I'm not entirely sure that those kids have classic autism if they improve or are "cured".  Stuck because I see lots of genetic family traits in T's autism ("vertical identity", for those who have read the excellent Far From the Tree by Andrew Solomon).  Stuck because I don't think that genetic causes are the whole answer.  Stuck because I believe both sides of this argument hold some truth, but the truth is somewhere in the middle.  I also think that we have much truth yet to be discovered.

I am caught between the two opposing worlds.  And let me tell you, the debates can be vicious.  I won't go into details, but I have learned the very, very hard way that I can't really talk with many other fellow parents about what has not worked for T because I either get the Disapproving and Superior Look (I didn't try hard enough or go far enough) or I'm actually told those very things. 

Add to that the persistent barrage of news stories that flash across Facebook or the television on autism, and it can feel like I'm under attack...unless I have The Shield up.   I've gotten pretty good at it.  Somewhere along the way, I built The Shield.  It has been very beneficial for my sanity, and for following my gut and doing what Rob and I believe is right for T.  

However, once I find another parent that doesn't have all the answers, that believes truly that each kid with autism has his or her own path to improvement, and that does not judge another's path - then that fellow parent is a friend for life.

Autism Understanding & Acceptance 2014 Day 10: Where to get help

 It is becoming quite apparent that you all know more than one child on the autism spectrum, and bless you all, you want to help.  Thank you.  I just had another friend ask me for help, and I think that sharing the answer in general terms here for everyone will be beneficial.  (And by the way, I love helping and I love answering questions, so keep them coming!)

The question was essentially: how do I find help for myself (or my friend, co-worker, etc) when there appears to be nothing in the way of support in my state/area?

My answer: get connected with an organization that can help navigate this crazy, complicated world of autism and special needs support.  You are going to need help locally in a "boots on the ground" sort of way, so it is going to be important to find local or state-specific help if it is available.  My hope is that you will be able to find a parent liaison that can direct you to your state's specific programs.

There are several national organizations that have state and/or local affiliates that can be extremely helpful.  The organization for which I've worked for the past six years, About Special Kids (www.aboutspecialkids.org) connects, educates and empowers families of children with special needs by directing them to the resources, programs & supports that are available.  If you need help for a child in Indiana, visit our website and call us.  Seriously.  

About Special Kids, or ASK, is part of a nationwide network called Parent to Parent USA (www.p2pusa.org).  If you live outside Indiana, visit this website to see if there is a Parent to Parent member in your state:
http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx

Family Voices is another nationwide network:
http://www.familyvoices.org
http://www.familyvoices.org/states

ASK and other Parent to Parent members, as well as Family Voices, are not disability-specific organizations.  You can call for help with any diagnosis for any child.

For developmental disabilities, The Arc is another nationwide organization that can assist:
http://www.thearc.org
http://www.thearc.org/find-a-chapter

Now onto autism-specific organizations that most likely  have a state or local affiliate:

Autism Society of America
http://www.autism-society.org
http://www.autism-society.org/about-the-autism-society/affiliates/

Autism Speaks
www.autismspeaks.org
http://www.autismspeaks.org/family-services/resource-guide?chgst=true

You can't be an expert on everything overnight.  That's why organizations like these exist.  Call or contact one of these organizations through their website.  There IS help out there.

Autism Understanding & Awareness 2014 Day 9: Picture schedules

Picture schedules, like the one I've included here, have been instrumental in helping T learn skills that require several steps to complete.  There are all kids of variations on the theme, but the picture you see is a near replica of what we use at home.

The idea is that a task is broken down into smaller steps.  Each step has its own picture or word, and these pictures/words are put in order, left to right, on one strip of velcro.  There is another strip of velcro below or aside the strip with the pictures, which is empty.  The whole skill or routine is essentially laid out for the person on these pictures.  Starting with the first picture on the left, they complete the step on that picture.  When that step is done, the person moves the picture to the empty velcro line.  Then they move to the next picture, and complete that task.  And so this continues, step by step, until all the pictures are on the other velcro line.  

In our house, we have a picture schedule for his morning bathroom routine.  These include hanging up pajamas, brushing hair, washing face, putting on robe, etc.  There are several for his evening routines: a set of pictures for his pre-shower (clothes down clothes chute, get bath towel, put down bath mat, turn on water), a different set for his actual shower, and then another for after the shower (dry off, brush hair, brush teeth, floss teeth, put on robe).  We are seeing great progress in him becoming more independent with all these routines, thanks to the help of these picture schedules.  The intent is that they will no longer be necessary - some day.  But for now, without them, he might get started on a routine but forget what comes next, get stuck partway through and just stop.  Or he might not know what to do to start a routine.  The pictures help him move through these long tasks and gain independence.  

What's really satisfying and simultaneously a little heartbreaking is that once he gets a routine down, he really doesn't want us hovering nearby.  It's as if he's saying "Hey, I can do this!  Get off me!"  Very age appropriate though - just like any 12 year old wanting her/his independence and not having Mom or Dad pestering!

Autism Understanding & Acceptance 2014 Day 8: Self-Advocates, "Autistics" that show us the way

What would we understand about what life is like for a person with Autism or Asperger's syndrome without these two individuals?  Temple Grandin, PhD (the first picture above) and Steven Shore, EdD (second picture) both have taught me so much about living life with autism.  Read anything written by these two brilliant individuals and you are given a glimpse into two truly incredible minds.  I have had the great honor to hear both of these inspiring people at conferences and workshops, and I attribute any understanding that I have of life with autism to these two people.

Temple Grandin's story is pretty well known now, thanks to the HBO film "Temple Grandin", which starred Claire Danes as a young Temple.  If you have not seen it, DO SO.  Temple went from being non-verbal and displaying some of the most challenging behaviors that go along with autism to earning her PhD and becoming the most prominent self-advocate in the autism world.  She is also probably our biggest hero, and I know I speak for many parents that look to her for inspiration as to what our children could be.
http://www.templegrandin.com

Stephen Shore has completely opened my eyes to the world of those with Asperger's syndrome (on the Autism Spectrum).  He has been particularly helpful in learning about the pros & cons of disclosure of a diagnosis (when to do so, and when NOT to), as well as Sensory Integration Disorder.
http://www.autismasperger.net
http://www.autismexpertshore.com

When I think on what has been helpful to me on this journey, the life experiences, stories and explanations these two have shared have been invaluable.  I am so very thankful for their voices.

Autism Understanding & Acceptance 2014 Day 7: My kids have questions

Another good question came in from a mom, whose children have - on occasion - met a child that is interacting with the world in a way that may seem different to them.  They have questions. “How could I answer their questions in a way that would make your heart smile rather than sound like an ignorant buffoon that is uncomfortable with the question?”

Children are so curious and so honest about their questions.  We’ve been approached ourselves by curious children on a playground who have questions.

That being said, I try to be honest, and I try to appear as open to their questions as possible.  I usually don’t come right out and say “autism”.  They usually are asking why he doesn’t respond to them or talk to them or play with them.  Sometimes they ask why he’s flipping his bracelet or sitting at the top of the slide and not sliding down.  So it depends on the question, so I’ll give a few hypothetical answers:

Q: Why doesn’t he talk?
A: Well, he just doesn’t.  (Shrug shoulders nonchalantly.) Not in the way you and I might be used to, anyway.   His brain just works differently than yours and mine. 

(Note: this usually suffices for young children.  If older, I might add that he’s thinking some really cool thoughts and he’s having a good time – he just doesn’t use words to talk about it.)

Q: Why is he doing that? (Flipping bracelet, etc)

A: He really, really likes it!  What do you like to do?  (Again, this usually suffices for a young child.)

But if they ask directly about why he’s different, or if he has autism, then I usually focus on how his brain works differently.  Not any better or worse, just differently.  It was the way he was born.  We don’t know why.  If the opportunity is still there, I’ll talk about the things he’s really good at, things he likes to do – and try to find things in common.  He thinks his dog barking is really funny!  He likes to kick a soccer ball. 

My favorite question was from a fabulously extroverted young girl at a local playground.  After chatting it up with us and observing T, she asked quite forwardly, “Does he have issues?”  Stifling a burst of laughter, I smiled and said “Well, yes, he does.  He is in the Kindergarten here.  Do you have any students from Ms. ____’s class come join your class?” She grinned and said, “Oh yes!  They are cool.”  And with that, the conversation was done and she was off playing. 

I have found that kids these days are so accepting of difference that it honestly astounds me at times.  Difference, many times, is just not a big deal.  I answer their questions, and they say “Oh, okay!” and go on with their day.  It’s just not a big deal.  And in many cases, especially if your child is school age, they are in a class with a child with special health care needs.  It is part of their normal now. 

Autism Understanding & Acceptance 2014 Day 6: Libraries

A friend - whose parenting journey also has not been typical - said that libraries have been invaluable on their journey.  Were they helpful for us?  Resoundingly, YES.  And there is one in particular to which I am forever indebted: the Center for Disability Information & Referral, or CeDIR:  (http://www.iidc.indiana.edu/index.php?pageId=34). 

This library is part of the Indiana Institute on Disability and Community, which also houses the fabulous Indiana Resource Center for Autism.  http://www.iidc.indiana.edu/index.php?pageId=32

We lived a few miles away from this incredible resource when T was first diagnosed, and in those early days of his diagnosis, I would drive to this library after dropping him off at school and sit in the stacks, pouring through books.  I would check out several books and videos at a time, devouring as much information as I could while he was at school for 2 ½ hours each day. 

Looking back, we were so incredibly lucky to have lived so close to this resource.  This being a library dedicated to information on disabilities, it had and incredible amount of scholarly books & videos that I simply would not have had access to elsewhere.  And I didn’t have to pay a cent for them.  So much of my early education in autism happened because of the CeDIR. 

Psst…for those interested...here’s the beautiful thing: they will MAIL you their materials if you don’t live nearby.