Autism Understanding & Acceptance 2014 Day 15: Professionals who LOVE him

Another thing that has been helpful on this journey: Professionals who fall in love with T.

This has been one of the unexpected blessings on this journey: the people that have come into our life because of T who end up falling in love with him.  The beautiful thing is that he loves them right back.  He still talks about his speech therapist from his preschool days, and he is 12 years old!

I know - if you work with kids, you are supposed to maintain a professional distance.  Yeah, yeah.  T doesn't respond to professional distances.  He responds to energy, he responds to engagement, he KNOWS when a person loves him.

I have long said that anyone that works with T has to love him.  When I say that, I'm not joking.  In our decade plus of having professionals come and go from our lives, the ones that have made an impact are the people that didn't just do their job.  They fell in love with this kid and in doing so, became passionate about reaching him, engaging him, and helping him learn.

Autism Understanding & Acceptance 2014 Day 14: Patience

Perhaps it could go without saying, but one of the most important abilities to have when raising a child with autism (or any special need, for that matter) is an unimaginable amount of patience.   Now, I know parenting any child requires patience.  I get that.  The amount of patience I'm talking about is a whole different ball game.  Every step of any new skill needs to be taught.  He needs a lot of prompting to begin a task.  And the intense scripting, especially when he is stressed, can really try even the most saintly person.  But blowing my top or rushing him or yelling only results in crying and more intense repetition of words, so patience it is.  

Regarding T: he has a tremendous amount of patience too.  As with all of us, he has his impatient moments!  But I think about what it must be like to want to communicate something, or need something - and not be able to say it - how incredibly frustrating that must be.  It also must feel odd to have people talk about you right in front of you; making decisions for you, discussing what you can't do, or every minor infraction that occurred at school, etc.  How much patience must he have - to live in a world not built for him?  

So we are patient with each other - as best as we can be.

Autism Understanding and Acceptance 2014 Day 13: My visit (if religious talk offends you, skip this one)

I debated long and hard about whether to post this one or not.  I am not one who easily talks openly about matters of faith.  It is a deeply personal subject for me and I get very uncomfortable sharing something that I feel is private.  I have been a member of the Christian faith for my entire life and attend church weekly.  It is a vital part of my life, whether I speak of it or not.  But sharing openly about my faith: that's a tough one.

That being said, if am I continue with the theme of what has been helpful, this moment was a pivotal one.

I mentioned in my previous post that I had a profound moment when I was near a nervous break during those early years.  I haven't shared this too often because it was a deeply personal moment, and it happened immediately after a moment I'm not terribly proud of.  But that's what makes it so profound, and I'm not making this up.

At this point in time, I was frantic to get T to check off more items on those developmental milestones lists.  We had five therapy appointments a week with three different therapists coming to our home, all working with him to make progress where he was delayed.  I was determined that if I worked with him hard enough during the off hours, put in the time and did it right, I could make the delays go away and everything would be fine.  For crying out loud, I was a full time stay at home mom at that point - if anyone could do it, I could.  But T was not on the same page.  I will never, ever forget the endless hours at our kitchen table, just T & me, trying to engage him, get him to do anything.  Nothing.  He'd just stare blankly off into the distance.  When I'd try to help him hold a crayon or do anything with his hands, they just went limp.  I couldn't reach him.  So there I was, frantic, and there he was, just placidly sitting at the table, NOT reachable.

After weeks and months of this, I hit the boiling point.  I stood up, slammed my chair back from the kitchen table and in doing so, accidentally hit the spindled chair rail behind us.  I was yelling at the world, frustrated and frightened beyond where I had ever been.  Spindles went everywhere and T was frightened and started to cry.  Then, sitting across the kitchen table from me, was Jesus.

I know, I know - I probably just lost some of you.  Believe me,  I don't fall into the category of Christian that feels they have a deep, personal & intimate relationship with Jesus.  (That's a little too cozy & casual a thought for me personally.)  But I'm telling you: He was there.  The calm, simple and clear message from him was: Suzanne, stop.  And I could sense Him smiling but shaking his head at me.  Sympathetic, present, loving.  And then He was gone.

A bit shaken but much calmer, I put the spindles back (nothing had been broken, luckily).  T calmed down, and so did I.  I apologized to T for frightening him, and moved forward, knowing I was not alone in this journey ahead of us.

Knowing I am not alone in this journey has been vital as we have passed through challenging times.

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!