Wednesday, February 27, 2013

Anonymity

I light of some controversial posts in the post-Newtown America, there's been a lot of talk recently about the degree of anonymity we afford our children through our blogs, our Facebook pages, and the like.  Are we compromising our children's safety in a world in which some people think that autism is something to be feared?  Are we recording details of life that our children might not want others to know one day?  Where do we draw the line between telling our stories and connecting with others and our children's need for privacy?

What I'm also finding is that some parenting bloggers suddenly find themselves in a position in which they feel the need to justify why they write.  Special needs parenting bloggers find themselves under the spotlight even more, as we receive calls from others wondering why we write about our children, why we "out" them as having autism and various disabilities, and why we make it so public.

My answer is simple - autism is nothing to be ashamed of, and I refuse to treat it as something unspeakable.  Discussion, understanding, and education are the only things that break down the barriers of ignorance that the world puts up against our children.

---

To provide some perspective, this is how I approach deciding what to post and what not to post:

While I use our real first names and pictures, I keep our last name a secret.  I also keep the names of providers/therapists/and doctors a secret, using pseudonyms for all.  I do this for two reasons: there are some real creepers out there (luckily, I've yet to run across one here) and for my son's future anonymity.  If he wants to read what I've posted about him one day he can, but a future employer, friend, or significant other won't be able to search his first and last name and find anything.  And let's be real - how many people his age out there are named "Jack"?  While someone might search website after website looking for pictures of Jack when he's a toddler, I have to realistically say that I probably don't have quite the reach to make my kiddo a household name.

Some readers do know our last name, but that's okay.  I post my posts to my personal Facebook page.  Friends of mine read this.  A select few other autism bloggers also know my last name.  I keep a strict policy of deleting any and all comments on my blog and/or Facebook page that reveal our identities or information someone might use to find us (like the specific name of our city or Jack's school).

When deciding what to publish, I never publish anything that I wouldn't just tell any personal friend or family member about our lives.  I think it's easy for people to forget this, but back in the days when we were children, we didn't exactly have tons of "privacy", either.  Instead of publishing stuff on Facebook or a blog, our mothers just called all of their friends and shared parenting stories.  It's how they kept in contact.  Now, we don't just call friends and shoot the breeze the way our parents did.  Instead, we share information and keep in touch with increasingly larger networks of people via blogs, Twitter, and Facebook.  They are the new snail mail, telephones, and moms' groups all rolled into one.  If we argue that sharing stories about our children in this way is an invasion of privacy, then we also should not share stories face-to-face with our fellow parents.  In fact, I'd argue that the face-to-face retelling of parenting stories is more of an invasion of privacy, because the recipients of that knowledge also know exactly who our children are and can convey those stories to other people within our children's social circles.

I don't publish every thought that comes into my head.  Just as there are not things that I share with everyone I know personally, so do I not share every aspect of our lives.  I strive to be open and real, but there are things - both within our family and about Jack - that no one needs to know.  As he ages, the list of what does and doesn't get shared with the world about his life will likely increase, but doesn't it for all children regardless of their diagnosis or lack of one?

I don't share things that are directly hurtful to my son.  Now this might be where some might disagree with me, but I don't think that talking about the realities of raising a child on the spectrum is directly hurtful to my son.  I think that there is a difference between saying "This life's tough sometimes" and saying "My child is bad".  In the same way that a mom with twins might complain about the extra work or a mom of a toddler might complain about the "Terrible Twos", so do autism mamas need to vent from time-to-time.  Would people accuse that mom of the two-year old of publishing posts that would make her child feel awful one day for being a typical toddler?  Of course not.  Nor would I expect that toddler as an adult to look back on those posts and think "I made my mother's life miserable" and feel bad about themselves.  I just try to be sure that there is always more of the "My son's the greatest person on Earth" than there are the "This special needs parenting thing can be a rough gig" sentiments.  I want my child to be able to look back at this and say "My mom didn't blame me for any of it.  She tried to understand and help and work with me as best as she could.  And above all, my mom loves me."

Really, I don't want to demonize autism, because I know that what others think about autism they too will think about my boy.  I have to bear that in mind when I write.

I don't say things that are directly hurtful to others.  By this, I mean that you'll never hear me call someone out by name (or blog name or Facebook page name, except in the case of last week's post Simply Evil, in which I called out a page that had been taken down for abuse and - therefore - no longer exists).  Rather, I tend to speak in generalities so that no one person feels the brunt of a post.  Along these same lines, you won't see me calling someone out for what they say online.  I've seen a lot of people doing that lately all in the name of promoting acceptance, which I definitely understand.  However, calling people out directly seems wrong regardless of how much they have offended me.  I shouldn't get page hits as a result of harming someone else, because two wrongs don't make a right.  In the past, I used to call out the media and celebrities for saying various things about children with special needs, but even now I tend to leave that alone.  Why?  Because the attention is what these people want.  I might send them an email or - in the case of some of the malicious Facebook pages I've seen lately - report their page, but I'm not going to give them the attention they crave.  Universally, calling people out serves the person doing the calling out no good.

I try to bear in mind the impact my words have on others.  One reason I'll likely never be a viral blogger is that I tend to hesitate when jumping on the bandwagon of a story or idea or topic that is getting sensationalized.  This is for several reasons.  One, I don't like "profiting" (getting page views and readers) for the wrong reasons.  I also tend to stay away from writing spur of the moment emotionally charged posts because it is in those times that we must consider what we need to say carefully or else we might say something we might regret.  That's why you won't see me sharing many viral posts on my page, either.

Two, that's not what this blog is all about.  Some viral posts get so sensationalized that they get swept into a frenzy of emotion and comment and discord, and that really shouldn't be what this is all about.  If that's what I have to do to get people to read my work, I'll stick to the few but loyal readers I have, thank you.

Three, I think that sensationalized ideas aren't carefully considered by the information sources before everyone has at it.  I'll use Newtown as an example.  Think of the number of "This is what we know..." facts we heard from the media that were later recanted as the story evolved.  Rather than taking the time to fact-check, news outlets tend to publish first and fact-check later, because they want to be the first to come out with the information.  Basing my ideas on that type of journalism seems irresponsible.  I have an obligation to speak carefully and not to jump on any bandwagon.

---

So...what is this all about, RM...you might be asking?  Why do I blog?

This blog exists for three reasons only, and these reasons have developed as I have grown into a mom, an autism mom, and a writer.  First, this blog was initially created so that I would have an outlet.  At the time (November 2010), I was a stay-at-home mom with little to do but sit at home or go to Gymboree on Tuesdays with a child who was very delayed and having severe developmental problems, even though I didn't want to see it at the time.  I began to write as a way of having an outlet to the world and releasing my emotions.  It was blogging therapy.

Second, after my son was diagnosed, my blog evolved to show the realities of parenting a child with special needs.  I was the only person I knew who had a child with autism - or any special needs, really - so my blog became a way to educate family and friends about the challenges Jack faced and the triumphs he encountered as well.  My hope is that through revealing the reality of autism - not what TV or the media or anyone with extremist views would have you believe - that I can make the world a better place for my child.  By showing everyone who he is, what his challenges are, what his strengths are, and what he is about in the best way that I can, I am helping someone understand who - in turn - might just treat the next autistic person they encounter a little better.

Third, this blog became a way to help others.  To create a place and a community where the average autism parent - the one who has good days, bad days, and who enjoys the sweet little rewards we all get along this journey - can come and feel a little less alone.  In part, it's to create a community for myself so that I can feel less alone, but I also feel fulfilled knowing that there are others who can come here and read and have that "Me too!" experience.

I think that - ultimately - that's why I won't allow myself to feel fear.  I won't hide my son and who he is, because I think he's a great person - rough days, meltdowns, and babbling smiles included.  While I can't speak directly to what it's like being autistic, I can take a guess and I can absolutely speak as an expert on what it's like to parent my child.

Am I my child?  No, but that doesn't make what I have to say less valuable.  It just makes it different. I have things to share about someone near and dear to me who is autistic, and I won't be afraid to do so.

Tuesday, February 26, 2013

Angry at God

It's been an up-and-down, back-and-forth battle.

There are days that have been better.  There are days that have been worse.  There are days that I wouldn't wish upon anyone.  There are days that I scream up to the heavens and say, "Why him?  Why this little boy?   Listen to his screams!  Why must he suffer so?"

There have been days when I felt like someone needed to take the blame for this.  Those are the days I struggled.  Those are the days that I felt angry at God.  Like a parent protecting her child from a bully, I have felt the need to ask God, "Why are You doing this to my son?  He's a good boy!  Leave him alone!"

I felt awful about this, as if we autism mamas need anything else to feel awful about.  I really wrestled with it.  Was I a fraud?  Was I walking through life, making everyone think that I was okay, when really I was mad?  Was I wrong for feeling mad?  Was I wrong for feeling mad at God?

It was tea with someone from my church that helped me feel a bit better about it.  I confessed to her that I had been feeling angry at God for the struggles my son endures.  I told her that it had actually made me question my faith.  If I am to follow the teachings of my Catholic faith, I have to believe that God is all-knowing.  He knew that my boy would have these struggles.  Even if my boy is created perfect in His eyes - and I do believe my son is perfect - then how was I to reconcile the fact that my boy has struggled more in his nearly 4 years of living than most people do in a lifetime?  Why is it that my boy has had to trade play dates and the everyday magic of early childhood for therapy and doctors visits all so that he could make any inkling of progress?  Why would an all-knowing, all-powerful God use a child in such a way?

It pisses me off, and I said so.  This lady, in her infinite patience and wisdom, shared this bit of insight with me.  I have a relationship with God.  It's not one-sided where I'm to follow blindly and love unconditionally, lest I feel the wrath.  Rather, our dealings with God are not unlike those with our neighbors, friends, co-workers, and spouses.  There are times when we are at the height of our joy and we rejoice with God.  There are times in which we disagree with the path He seems to place before us or our loved ones, and we get angry.  In the same way that my entire relationship with my husband isn't dictated by being angry - by getting in one fight - nor is my relationship with God or my faith.

You know what?  It wasn't even that realization that helped.  It was sharing with someone that I was vulnerable.  That in spite of my rosy disposition most days, there are times that I'm pissed about the way my son has to struggle.  I'm not pissed for me, I'm pissed for him, just as if a bully was picking on my kid.

It was also hearing someone say that those emotions were okay that helped lift a weight off my shoulders.  You see, being an autism blogger doesn't come without its hazards.  I am frequently balancing the need to be optimistic with my own need to scream on the days when screaming seems to be the only thing my heart wants to do.  Yet I hear from others within our community that to share all of those negative thoughts is destructive both to the community and to our children.

The point is that keeping it inside will only hurt you.  It will only hurt your children.  It will eat away at you.  Get it out.  Release it and let it go.  You will feel better and you will parent better.

And know this - your emotions are always okay, just as long as you don't let them rule your life.

Monday, February 25, 2013

Be Himself: An "Autistic People Should..." Contribution

Over the weekend, many autism bloggers produced posts with the prompt "Autistic people should...".  They did this because of the plethora of negative responses one sees if they were to search for that same partial phrase, so at it's core this was an exercise in positivity.

To find a list of many of these pieces, go to http://autisticpeopleshould.blogspot.com/.

I read through the pieces I could in between dealing with Jack's crazy GI reaction to his antibiotic, which left me less time this weekend than I would have liked.  Some pieces I agreed with, others I did not, and others made me think, which is what all good writing should do.

At first, I had no intention on joining in with this exercise.  It's not because I don't appreciate efforts in autism positivity - I do very much - but because I felt that as someone who does not identify as autistic, even though I might be not quite neurotypical, I have no right telling autistic people what they should do.  I'm not part of the "in-crowd" of bloggers accepted by the advocacy community and I didn't want to step on anyone's toes.  Honestly, the only people who can decide what autistic people should do are autistics themselves.  Plain and simple.

Then I realized, it will never be plain and simple.  So, I decided to amend my previous decision.  If I could tell autistics what they should do, it would be this...

Autistic people should be themselves.  They should be afforded the respect, dignity, and self-determination that we would afford anyone.  Autistics should be cherished and loved and regarded with decency not because they are autistic, but because they are HUMAN...just like the rest of us.

---

There is one autistic that that I can make the "should" statements about more definitively, and that is my son.  What gives me that right?  Well, I'm his mother and he is my child.  With that in mind, Jack should...

...be himself, in whatever capacity and definition that may mean.  There is nothing more important than being genuine and who you are, regardless of what others may think.

...embrace who he is, in all of the uniqueness that makes him the wonderful person I am proud to call my son.

...be kind.  There is nothing that will carry a person farther and touch more lives than a little dose of kindness.

...dream, and dream often.  His limitations will only place obstacles in front him, but never barriers.  Obstacles can be overcome.

...forge his own path.  He should never feel that he has to take the road that the rest of us take.  His life can - and should - be his own.  The only person who can define his success is HIM.  His path needn't look like anyone else's.  In fact, I would love to see him take the road less traveled.

...ask for help when he needs it.  It's a true measure of courage to admit that you cannot do something alone.  Help will always be available for him - from his loving family and friends - if he needs it.

...find his safe spaces, but he should also have the courage do step outside of that comfort zone.  There is much he can teach the world, and much love he has to give.  Again, help will always be there for him if he needs help with this.

...never give up on love and friendship.  Even at times when he may feel that friendship and love might be too overwhelming, might not be the effort, or that he might never find someone who truly understands him, he should keep his eyes open and know that the world is full of kindred spirits in spite of the ones who might make him think otherwise.

...know that he is loved by so many.  There will be times - no doubt - when we will not see eye-to-eye. There will be times when he believes that I can't understand him, just as all children are wont to do with their parents.  In spite of all of this, Jack should know that I love him with all of my heart and that every decision I have made for him in his youth was made with his best interests at heart and with an abundance of love for him.

---

It's not for me to say what autistic people should do, but that is just a sampling of what the most important autistic person in the world - to me, at least - should do.  He should be the wonderful person he is, and he should know that there is someone - his mother - who loves him very, very much.

Friday, February 22, 2013

Not a Baby Anymore

Dear School Team Jack (as I've come to affectionately know you all),

I just have to let you all know that after multiple IFSPs and a previous IEP, I believe that yesterday's meeting was a glowing example of just what can happen when good people really put their heads together for the sake of one very special little boy.  We came up with solutions, ideas, and a package of services that I believe - I hope - will produce a year full of wonderful things for my sweet boy.

Now, forgive me if I gush for a second.  You see, I know that you all care about Jack.  You abundantly demonstrated that to me yesterday.  I know he's in good hands, under watchful eyes - his Grandma's included - as he takes these next steps, but there is still a part of my heart that left with me this morning when I put my little one on the school bus.  Today is his first day going to full-day SN Pre-K like a "big boy", and there is something in my heart that really began to hurt this morning as I watched my boy go.

I agree - this is good for him.  It will allow him to work on those critical skills of eating his lunch at school, plus it will give you all more time to work on the myriad of social, communication, and self-help goals that we put in place yesterday.  However, me with my Mommy naivete did not anticipate that my sweet boy would start going full-day the very next day.  I know it's for the best.  I know this will give him a full-day to test the waters and then a weekend to relax and regain his strength.  For Mama, there is no such thing as ripping the Band-Aid off to get the pain over with quickly.  Instead, the pain is a slow pull for this Mama, no matter when it happens.

You see, today is a stark reminder that in spite of the fact that my boy still needs help eating, that he still is in diapers with no potty-training end in sight, and that he still communicates and thinks like a toddler, my baby isn't a baby anymore.  As a parent, that's a tough and painful reality to face.  Being a mom of a special needs child, it's is a particularly difficult reality, as time never seems to be on our sides.  Time steals away the days, months, and years as our children's bodies grow faster than their skills seem to develop, yet time also seems to preserve our children in a state of prolonged babyhood, making the transition to the rites of passage of childhood - like full-day school - even tougher to weather.

So forgive me if I'm weepy today.  Forgive me if I'm not excited about my newfound freedom, planning to go get a mani-pedi in my son's absence this afternoon.  I'll probably be doing what I did during his first day of SN Pre-K last March, which is cleaning and trying to keep so busy that I don't notice the hours stretch on until time to go get my little boy.

Thank you all.  There are heroes in this world who seem to go unnoticed, but know this - your heroics are observed and appreciated in this home.

~ Jeanie (RM)

Thursday, February 21, 2013

Be a Good Man

As you read this, I'm likely either sitting in Jack's annual IEP meeting or I'm actively trying to keep the chunks from rising in my throat as I think about it.  Why?  Because anxiety is a funny beast.  Even though I have nothing to fear, I still do so.

It's these milestones that get me thinking about the future.  My visions for Jack's future used to involve going to a certain college, perhaps pursuing a particular career (I was pushing for engineering), and a life involving family, marriage, and maybe some children.

The reality of life is that I don't know what the future will hold.  There is nothing out there that says Jack absolutely cannot accomplish these things.  The chances are that Jack's future will not resemble that image that once occupied our imaginations, but that's okay.  Who says that he needs to achieve any of those things to be happy and successful?  Who says that he can't still achieve some of those things while still needing some degree of support?

The sky's the limit, but the key is to not project and not make goals.  The key is to live in the now.

That being said, I do have one wish for my son.  It's a big one, but I believe achievable.  Hell, I think it's easily achievable.  It's not dependent on his level of independence, his level of education, or whether or not he can find employment.

I want my son to be a good man.

I've seen people use their neurological differences as an excuse for poor behavior and for treating others with a lack of respect.  I've seen people claim that their neurology makes them "right" while someone else's makes them "wrong".  Yes, I've seen this advocated from both the NT and autistic standpoints, and in both cases I think the person making these assumptions is wrong.  Our neurology is no excuse for treating people with a lack of respect and with unkindness.

What would I like to see for my boy as he grows into a man?  I would like him to love himself and feel confident in who he is.  I would like to see his disabilities not have an impact on his self-esteem.  I would love to see him grow into someone who knows his strengths and limitations and who can confidently and respectfully advocate for the accommodations he needs.

I would like to see my boy find his community, but I do not want to see my boy close himself off to certain people.  I would like to see him find some autistic friends who understand him and can provide the support that he needs - that we all need - from people who walk a similar path.

I would like to see him have friends with disabilities other than autism, because autism is only one of the challenges my boy faces.  Indeed, some of the few children he doesn't run from - some of the few that seem to make him less uncomfortable - are children with Down Syndrome.  I would like to see some of these snippets of tolerance of someone in his space morph into a friendship as time goes on.

I would also like to see my son make NT friends.  I don't want him to close himself off to the kindred spirits out there that see him for the wonderful person he really is.

I don't want my boy to move forward in life with a sense of entitlement.  I don't want him to feel like his neurology entitles him to all take and no give.  I want him to both ask for what he needs, but to not let his limitations be his excuse.  I want him to understand that there are times when you should meet someone halfway.

I also don't want him believing that the world is out to get him.  I don't want him walking through life feeling like a victim.  I know that there will be misunderstandings between him and the rest of the world.  Rather than claiming that he is being attacked, I would like to see him try - just try - to come to some level of understanding.  He is allowed to expect the other party to do the same.  If no agreement can be met, then I encourage him to walk away.  No good comes from dragging someone else through the mud, in most cases.

I also want him to know that vulnerability is okay.  It's okay to make mistakes.  It's okay to be wrong.  It's even better to have the strength to admit it.

I just want him to be a good person - a good man.

I don't believe that means that he has to be a push-over.  I don't believe that means that he needs to sit by and have his voice go unheard.  It doesn't mean that he needs to let people take advantage of him.  He does need to stick up for himself.

Here is what I want my son to know...

You will catch more flies with honey than vinegar.  Be kind, radiate acceptance and warmth and generosity and you will find that people will treat you well.  People will be willing to accommodate your needs if you show them the respect, kindness, and compassion that you would wish them to show you.  If they don't, do not engage in a fight.  Never, ever pick a fight - either verbally or physically.  Know that the true mark of strength and dignity means occasionally walking away.  Walking away doesn't mean you're weak or going to let someone walk all over you; walking away means you are the bigger person.

I just want my son to be a good man.  The rest - independence, a job, college - is secondary.  Living a life of goodness is paramount and the true measure of a person.  It is the true measure of respect.

Tuesday, February 19, 2013

IEP Season


It's time.  The notice came in the mail.  A long list of therapists and teachers was printed.  A date was proposed.  I accepted.  It's coming.

It's time for my son's annual IEP review.

You feel my anxiety on this, right?  Even during the times when you don't anticipate a fight, when you think it will all be okay, and just when it's becoming routine, you feel that lump in your throat creep up on you.  You realize that IEPs will never seem routine.  They'll never be comfortable.  You'll always go in anticipating a fight.

Even though I've spent the past several days preparing for my son's IEP meeting tomorrow - gathering and filing paperwork in my son's binders and making lists of desired goals and current concerns - I never feel fully prepared.  Really, I've been "preparing" for this IEP for the past year.  I prepare by being a presence at my child's school.  I volunteer as often as I can.  I serve as Room Mom for my son's special needs Pre-K class.  I desperately try to maintain a good relationship with each and every person in that building, because I want that to carry over to our IEP meeting.  It's the old adage, "You scratch my back and I'll scratch yours."

Here's the thing - we've been in the IEP/IFSP game for 2 years now.  In that time, I've helped develop an IEP and 3 IFSPs for my boy.  I've never had a "bad" meeting with the exception of that initial IFSP in which I first heard my son's delays fully explained, but I still go into each meeting with the fear that this will be the first.

Why?  Because everyone tells me it will be bad, that's why!  I hear horror stories weekly about awful IEPs with adversarial administrators and it scares the you-know-what out of me.

But...does it have to be that way?  Do we have to go into IEPs feeling like we're about to get screwed? You see, the way I think about it is that my child is about to be 4 years old.  This means that he has the potential to be at this school for 7 more school years.  I can't make enemies.  I just can't.  My kid has to be there too long.  We have to work together.  I can't go into every meeting feeling like I'm about to get ambushed.

I can go in prepared, wise, and ready to make my case.  I have to not be naive and allow the school to walk all over me, but I do need to go in with the assumption that they have my son's best interest at heart.  If I don't, then how can I trust my child's education and care to these individuals for 180 school days each year?  I have to have faith in my fellow man (or woman, as is often the case in special education) and believe that they are in this to help my baby, and that's what I plan to do.

Bringing some cupcakes, tea, and coffee probably doesn't hurt, either.


Friday, February 15, 2013

Echolalia Evolving

"Although Jack's spontaneous speech production has increased significantly during his time in speech therapy, he still still exhibits echolalia far more often than initiating speech production."

---

The above statement was taken from Jack's most recent speech reevaluation, performed around the New Year.  Echolalia has been a staple of our lives since Jack began to acquire speech.  It simply became a part of our "normal", on this detour from typical development that Jack is guiding us along each day.  Echolalia is a normal part of speech development, typically subsiding around 30-months of age, but we're obviously past that typical window.

Initially, Jack's echolalia was brief, single words.  As time has gone on, he repeats larger and longer snippets of overheard speech or TV shows.  Now, it's not that I think that his memory has gotten better, because I believe his memory has always been awesome.  It's that he's able to recall that information in larger chunks.  In fact, Jack's memory is INCREDIBLE to me.  The fact that he can hear something - like the schedule at school being read in the morning - and program it to memory upon hearing it once, then to be able to pull that and, albeit non-functionally, script it repeatedly later in the day is mind-boggling.  I wish my memory was that good.

Any parent with an echolalic child can tell you that echolalia is a difficult thing to both deal with and explain to others.  Especially with children - like mine - who have some articulation issues, echolalia can be difficult to the unfamiliar adult or untrained ear to pick up.  Someone will hear Jack say, "Center time.  Motor skills.  Language activity.  And then we'll go outside."  That person will jump up and down with glee saying, "He's talking!  He said a full sentence!"  Well, he's speaking, but what was the communicative value in those words?  He's doing something he frequently does these days - repeating his school schedule.  Echolalia is one of those things that you have to be familiar with to identify.

Now, I'm of the opinion that echolalia is better than no speech production (hell, it's practice!), but the goal, obviously, is to move towards purposeful, spontaneous communication.  We want Jack to be able to produce his own original thoughts.  We don't want him bound by the thoughts and words of others.  We want to hear what he has to say.

Luckily, we are starting to get some of that.  Jack can produce some 2-word phrases (the most common being requests/refusals with "More" or "All done"), and he's emerging in his use of "I want" (after a year of working on it...yay!).  It is these phrases that are spontaneous and - thus - what his speech testing is based on each time.  Language-wise, he's testing at the level of a 24-month old.  His echolalia has dropped to being about 70% of his speech from about 80-90% of his speech a year ago.  He also produces more speech - both spontaneous and echolalic - and graces us with getting to hear his voice more often, even if the words are not purposeful and are not his own.

We're witnessing the evolution of his echolalia.  We're seeing more pronoun reversal (his echolalia wasn't long enough to include the pronouns last year) and we're seeing longer echolalic phrases.  While one might say, "That's not good.  That's just more of the same...more behaviors typical of autism", I find evolution to be a sign of growth.  I have to believe that changes in my boy's speech - even the progression of his echolalia - have to mean growth and learning and development.

Why?  Because my boy isn't developing in a manner anywhere close to "typical", and that's okay.  I don't need normalcy.  I don't need age-appropriate.  Evolution will do.

Thursday, February 14, 2013

Compliance Issues

I hear people talk about compliance a lot within the autism community.  Autistics share experiences about being taught "compliance" and having that trust violated by way of abuse or manipulation.  Parents strive to teach some degree of compliance and feel intense frustration when their child simply won't do what they are told.

Now, I look at compliance from a slightly different perspective.  Working in the biotechnology sector, I think of compliance as a way to keep people safe.  If my company was not compliant with various rules and regulations, the public might be at risk.  There are rules, laws, and norms our society sets forth not to marginalize us, but to keep us safe.  To help society work together more efficiently.  To keep us from doing crazy things like running red lights just because we want to get to work a few minutes faster.

You see, compliance means different things to different people.  Really, it's all based on your personal perspective.  I can see how compliance might be a long-4-letter word to some people where to others it would dictate a tenet of society.

I think that we also miss that compliance issues aren't exclusive to the autism community.  To the contrary, parents of SN and NT children alike strive to teach their kids "compliance", though you don't often hear NT families refer to it in those terms.  You might hear it referred to as "respect".  "Good behavior".  "Learning right from wrong".

Indeed, isn't this what all parents want for their children?  When a child goes to school and their teacher asks them to keep their hands to themselves and not poke at their classmates, we want our children to comply with this request.  We don't want the other children to get angry and retaliate.  We don't want the teacher to think of our child as being one of the "problem" children of the class.  We don't want our child to suffer the humiliation and upset of being punished.  Our child complying with his/her teacher really is in everyone's best interest.

If we ask our kids to go get their shoes so we can get to an OT session, we want - we need - them to do it.  We don't say it because we enjoy pissing our children off, particularly our children with special needs.  We do it because we want them to be more self-sufficient.  We do it because our families work best when we all work together, because - as a family - we're in this together.

As a result, we teach our children or, as we're experiencing in our house right now, we attempt to teach our children that there are times in which "NO!" is not an option.  In our house, we hear a simple word of dissent - "NO!" or, at times, "ALL DONE!" - a lot these days, but we also respect that our boy struggles to understand our reasoning behind our parenting decisions, largely due to his receptive language and cognitive and reasoning issues.  In these circumstances, I have to put my foot down as a mother and make the decision for him.  For example...

...you cannot say "NO!" to brushing your teeth, taking a bath, or taking prescribed medicine (think antibiotics).  I make you do these things because they maintain your basic level of health.

...you cannot say "NO!" to wearing a diaper.  At the present moment, you cannot - and have not - used the toilet despite all of our efforts and you struggle to control your bladder.  The way to keep you, and the rest of our house, clean and hygienic is to have you in a diaper.

...you cannot run into the street, bolt from my grasp, or wander away.  I keep my hands on you for your safety.  Doing any of these things will potentially cause you great harm, so I will ignore your "NO!" and carry you if I must.

...you cannot say "NO!" to going to school.  It is the "job" of children to go to school, and just as I had to go to work daily unless I was ill or had a really good reason to do otherwise - think jury duty - I was there.  Unless I determine there is a compelling reason for you not to go - and I do investigate each time I notice "NOS!" increase with school or therapy - then you will go.

There are lots of things that I will, however, allow him to say "NO!" to...

...you may refuse food.  I will never force-feed you, despite what anyone tells me to do.

...you may refuse to speak.  I will try to prompt you to repeat social niceties, but if you refuse, that's okay.  I'll defend your refusal and explain your circumstances.

...you may refuse to engage in certain tasks that set your sensory system on edge.  You may still have to engage in the task - like bathtime and tooth-brushing - but I can promise that your "NO!" will be heard and taken as a signal to, at the very least, get it over quickly.  Other tasks, you may still have to engage in, like school work, but I will advocate for you to have accommodations - sensory breaks, compression vests, adaptive crayons or paintbrushes instead of finger paints - to make it easier.  Others, like playing in the sandbox, are okay for you to refuse.  I will try to help you, as you age, distinguish between these circumstances.

And the above lists aren't all-inclusive, either.

If someone were to ask me if I teach my child compliance, well yes I do.  Our world operates best when we all follow certain rules.  We are all asked to do things daily that we don't love.  I hate paying bills.  I'd rather not have to pay the toll at toll booths.  I think it's silly that I have to stop every day at that same red light when no one is coming from any other direction.  I do them all anyway.  I do them because it's what I have to do.

My kiddo will have things that he has to do.  He won't agree with every decision that is made in his life, but you know what...NT kids don't, either.  A NT kid might hate that they have to eat their broccoli before having dessert.  No one likes to go to work.  We'd all love to stay home, but we have to do it.

However, teaching my child compliance doesn't mean teaching him blind obedience.  Compliance means obeying and listening to trusted adults - teachers, family, and caregivers - until you have a valid reason to do otherwise.  It does not mean getting in a car with a stranger.  It doesn't mean allowing someone to do something inappropriate to you.  Like NT parents, it is my job as a mother to help teach my child as he gets older what is and is not appropriate for others to do and ask you to do.  Having a special needs child may mean that such messages are even more difficult - and more imperative - for him to understand, but that is the reason to do it.  It shouldn't be one or the other - non-compliance or facing potential abuse.

These concepts aren't incompatible.  I will teach compliance.  I will teach respect.  I will also - to the best of my ability - teach my boy about danger and how to protect himself.

Tuesday, February 12, 2013

Tony Knows

Echolalia can be an adorable thing, really.  I may never fully know what is going on in Jack's school days, but I know what they sing.  Sometimes it's something easily identifiable like "The Wheels on the Bus" or "Five Little Monkeys", while other tunes elude me, like the most recent ditty he chants that includes a string of jargon followed by the words "Sunday roast" (I keep meaning to ask his teacher about that one).

Often times his teachers can provide insight into the songs that I simply can't identify based on Jack's articulation of the words.  There are some, though, that I'm not privy to hearing at home and I have to learn about second-hand from his school team, like this one that you may or may not have heard before...

Toe-Knee-Chest-Nut
Toe-Knee-Chest-Nut
Toe-Knee-Chest-Nut-Nose I Love You!

Of course, with Valentine's Day approaching, there is a renewed effort both in school and in private therapy to have Jack produce that Holy Grail of spontaneous phrases - "I Love You".  They do so with the "Tony Knows" song, but they also do it with sign language; his teacher is trying to teach him to sign "I love you", but the "you" part keeps eluding him.  Last Friday, I watched with glee as his teacher prompted him through the signs for "I" and "Love", with "You" being the hard part (that pointing...it's just confusing to him!).

Yet, when I try to get him to run through "Tony Knows" or signing, he starts screaming "NO!"  I was at first dismayed, but then as the week went on I began to think more about it.  I've read compelling arguments as to why we shouldn't prompt our children to say "I Love You", but I think it's just human nature for us as parents to want to hear those words.  So, why would it be so hard for Jack to just say it when I prompt?

I began to think about the reaction Jack likely gets from everyone when he complies with a request to produce some form of "I Love You".  I know that I gush with excitement, as would his teachers and therapists.  Perhaps, are we going too over-the-top with our reaction?  Could our praise of Jack be one of the things that thwarts the whole process?

Maybe it's not.  Maybe I'm over-analyzing it.  The one thing I know - even though I have to remind myself from time-to-time - is that I don't need to hear that spontaneously-produced, unprompted "I Love You" to know that he does.

I know it because I feel it.  Love doesn't always come in the form of hugs and kisses and spoken words.  I've discussed this very thing with my Dad before - love doesn't need reminders.  It doesn't need anything but emotion.  Love isn't an action; love just is.

So, in that sense, Jack is love.  He doesn't need to show it.  He's the embodiment of that feeling.  Just being near him gives me the sense that I'm needed.  That I have a purpose.  That his world is better for my presence within it.

I'll wait, my love, to hear those words.  I'll wait forever if I must.  In the words of that song that your teachers are trying so hard to teach you...

Tony Knows I Love You.

Yes, my sweet boy.  I know you love me.  I know that you know I love you, too.  No words necessary.

Monday, February 11, 2013

The Toll

My God, I'm tired.  I'm weary, I'm exhausted, and I'm tired of the fight.  There are days where I just want to curl up and shut the world out.  To hell with what you say...let my boy be!  However, I know that letting him be won't teach him to eat, to care for himself, to speak, to move like other children, and to find constructive ways to calm his overactive senses.

It's been almost 2 years of having a child with diagnosed special needs and it's been almost 4 years of parenting a special needs child.  I'm starting to feel like it's having a toll on my body and soul...literally. I've battled more colds than I can count and I developed a stomach bug in the wee hours of the morning Christmas Eve.

It's like my nerves and immune system are shot.

Here's the thing...sometimes this life is tough.  The rewards are rich - don't get me wrong - but the day in and day out is rough on us mamas.  Lately, I feel like it's been bubbling over.  It's not that I don't think I can handle it - I can and I will because, like all mamas, I must - but oh my God, the stress.  The stress just seems constant.  It feels like you're being bombarded from all sides.  Even in the good times, it's hard to feel like you can let your guard down when you're always worrying about what's next.

It's always something.  That upcoming Katie Beckett Deeming Waiver renewal that guarantees my son's lifeline - his Medicaid.  The IEP meeting in a couple of months.  This holiday or that.  A new therapist added to the mix.  

It's always something.

I try to be optimistic.  I try to be cheery.  I try to share the inspirational side of this life, but I can't always do that.  I'm finding that when I do not allow myself to be totally open and honest - when I round into the stages of sugarcoating things - I make myself more weary.  Trying to deny my feelings only makes it worse.

I also think it's an aspect of special needs parenting that doesn't get enough focus.  You will hear about caregivers who fall prey to a unique combination of stress and anxiety and sleep deprivation that seems to come from days and weeks and months and years of always having something - a therapy schedule, doctor's visits, medical bills, meetings, and the like.  It's feeling like you're walking a tight rope between the right mix of intervention and acceptance all while you're teetering over a chasm of deficiencies in the system and one misstep will see you plunging downward.

We can't do this to ourselves.  Caring for someone who is very dependent on around-the-clock care - be it a very young infant, a child/adult with special needs, or an elderly parent - requires you to be well and whole.  You have to take care of you.

That's a hard lesson to learn, but one that you must.  In these times of great stress, where my boy is struggling and the responsibilities pile on, I let things fall by the wayside.  The house doesn't get cleaned.  The dishes may sit in the sink a bit longer than normal.  When Jack gets on the bus, it's okay for me to go back to bed.  I need my strength for this.  This is the American Gladiators of parenting and I need my reserves available.

It also means that I had to take a blogging holiday.  I'm better now, but maybe I was pushing myself too much to publish everyday.  Maybe it's better to publish when I have the energy to do so.  Or maybe not.  Maybe the release is better.

The point is that this life - this roller coaster ride of a life known as parenting a child with autism - is not easy.  There are high-highs and low-lows.  There are days that seem great and others that do not.  There is no end in sight.  For the sake of our children, we parents must take care of ourselves.  Do what you must.  Don't worry about what people think about your messy house or lack of make-up or the fact that you didn't bake something for school.  By taking care of you, you are ensuring that you can take care of your autistic child.

Let go of the things that bog you down.  Know that it's okay to have bad days.  It's okay to cry.  It's okay to feel angry, but you need to take care of you so that those moments don't rule your existence.

Spend a few minutes today doing something for yourself.  If not for you, do it for them.  Do it for those little faces who hold our hearts so dear.  They're worth it, and so are you.


Friday, February 8, 2013

Bad Mother

Each day has had snippets of smiles, but many more moments of struggle than we are used to witnessing.

In particular, my boy wakes up struggling these days.  I go in his room and peek down into his crib.  Some days he's awake.  Others, he's not.  It doesn't seem to matter.  Some days I can get him out of the crib happy only to have the screaming start once I start trying to dress him.  Some days the screams begin before I can even lay a hand on his little body.

It's not just screams.  It's not just crying.  It's full-on, fight-or-flight-type reactions in which he flails and desperately kicks his clothes, his diaper, and his comb away.  We have to do it.  He has to wear a diaper.  He has to get dressed.  He can't tell me what's going on.

Each morning we struggle through it as the clock ticks.  We comb his hair as best as we can through the flailing and sobbing.  I try to wrestle his little arms into the holes of his coat.  He grasps the fabric with both fists, trying desperately to hold it at bay.

Each day I plead, I have to do this, my love.  I have to do this.  This is what's best for you.

In the moments that remain before the bus arrives, I rock him back and forth as I have done so many times before in some vain attempt to calm my boy before the next onslaught.  Some days it works.  Most it does not.

I hear the sound of the bus rounding the bend in the road.  The tears still fall.  I try to put him down and put his backpack on his back, but he clutches my shirt for dear life.  Giving up, I carry him out to the bus.

I try to place him on the bottom step of the bus, but to no avail.  The bus driver looks at me and motions for me to get on with him.  I carry him down the aisle, past the other little boy in his class, and get to his seat.  The other kids coax him.  "Come on, Jack, we need to go to school!"  Jack's legs splay out and his body goes rigid.  His arms slap at the bus driver's hands as she attempts to buckle him in.  I have to hold his hands to his sides so that she can get him safely strapped in.

It takes all of the strength I can muster to reassure him calmly, kiss him and tell him I love him, and walk off of that bus without letting my own tears fall.  I do it because I have to be strong for him.  I step off of that bus feeling like the worst mother on the planet.  I had to restrain my boy just to get him safely on the bus so that he could go to school and learn and grow.

It has been this way for a week now.  It's wearing me down.  It's making me weary.  Yet I have to keep going, because he needs to go to school.  He needs to go to therapy.  The world presses on in spite of setbacks and we shall press on with it.

And I feel like crap for doing it.

I feel like a bad mother.