Monthly Archives: April 2012

I come from a “Place of Yes.”

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In general, we are happy with our support from early intervention.  I have to say, though, that our service coordinator says “No,” a lot.  She tells us programs don’t exist when they do, that our son wouldn’t qualify for physical therapy when he then did, that she can’t write a short letter in support of our grant proposal stating we could use financial support to aid in co-payments for ABA (because NJEIS wouldn’t offer us more than one hour ABA consult per week despite his now very blatant needs of an intensive ABA program and doctor recommendations for it) when in the same e-mail back and forth of saying “no” she could have so easily just done it.

I was sitting here this afternoon sort of perplexed.  I worked for a nonprofit hospice at one time, and I used to get lots of different demands from patient families, but I didn’t ever say “No” very quickly, if at all.  It wasn’t just because I understood customer service; it was because I had compassion and understood my role as a professional.  When it comes to a patient or client needing service and support for a serious situation, isn’t it a normal response to try and then offer different options if the first choice option is not available?

I guess I come from a “Place of Yes” while our service coordinator comes from a “Place of No.”

Annnnd I now am going to make myself look very mature with a reference to the Real Housewives of New York.  Just watch the first clip of Kelly & Bethenny at the charity meeting and imagine Kelly is our service coordinator and I am Bethenny and imagine we are talking about anything early intervention.

Dismissing Autism Makes Me Nauseous.

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I am a very passionate person, which can be a great strength and flaw, but when it comes to my children, I tend to think it is mostly a gift.  Because I don’t easily take no for an answer, I don’t accept things for what they seem, and I generally don’t let ignorance beget itself.

What is frustrating, though, is that no matter how passionate I might be, there are people who are equally as passionate and… opposite.  And that’s fine– diversity is a good thing– but when it negates the very existence of your child’s issues or, in fact, blames parenting for the challenges faced in your home, it really is bothersome.

For instance, when in the midst of autism awareness month, you find an article like  this nonsense, stating that autism is a false ‘epidemic,’ you get a little nauseous.  I think it is just so easy to write about autism like it is some philosophical or psychological game when your child does not have a diagnosis of it or does not meet the criteria for it.  Families dealing with autism struggle every day, not because the parents aren’t trying, not because the children are bad, not because the child is lazy or antisocial or any other stupid casually used word that sums nothing about that child up at all.

I hate the argument that the label of autism is used lightly, as if people WANT it.  When my son’s issues truly became obvious to me last July, I cried myself to sleep for an entire week straight, not because I had made up his problems to alleviate my responsibility as a parent, but because I had jotted down notes about him and started searching and realized he met the criteria for autistic disorder– a lifelong and extremely challenging disorder.  Believe me, the tears I shed were not out of joy– I wasn’t relieved to realize my son has a permanent set of challenges that will make his every day life difficult.

And that’s another thing.  I love when people assume mild autism is not challenging, as if it just means a kid is awkward.  What seemed like mild autism in our household has made getting dressed, eating, feeding, walking up stairs, going out in public, playtime, bathtime, all facets and aspects of life etc. a great challenge.  As our pediatrician said, “a 2 out of 10 is not a 0.”  Why don’t people understand that?  And why don’t people understand that autism affects children and people differently at different stages of life?  My son seemed mild at one time, and he has made a lot of progress in some ways, but now he seems more severe than before because he is getting older.  I love when people say kids diagnosed with mild autism grow out of it.  On the contrary, he is growing into it. His issues in self injury and not responding to his name are not just a frustrating behavioral issue of selective listening or sensory challenges– they are true safety issues.  Mild autism is a myth, my friends.  If a person is on the spectrum, he or she is on the spectrum.  Autism is real.

I also need to emphasize that I don’t care about hand flapping or spinning or other harmless self stimulation behavior.  We have no plans to target those behaviors in a behavior plan.  We don’t need an explanation for those movements; we don’t need to ban lining up trucks.  But we do need to understand that those movements and repetitive play behaviors are telling of his state and level of comfort, that sometimes they are useful ways of coping with stressful situations or uncomfortable sensory experiences.

But eye poking, self-pinching, self-punching, hitting an infant sister, slugging Mom or biting Dad, meltdowns of epic proportions… these things are not okay.  These are not just behaviors that can help us understand him– they affect health and safety of an entire family and friends and more.  Do these behaviors need a label to be handled?  Not in and of themselves, but when they occur with enough other criteria for diagnosis, you realize that these behaviors and the other social communication challenges in a child with autism do not occur in a vaccuum.  It makes more sense to look at all the challenges together and give it a name than to only analyze one piece of a person.  It makes to figure out what works best for a person with alllllll of these issues.  It’s not narrow-minded or easy to do things with the autism label; it’s smart and comprehensive.

Looking at the whole person is part of why I am glad that the DSM V will include a sensory criteria for diagnosis of autism.  My son has serious sensory issues that are not directly explained by his diagnosis of autism as they are not a current criteria for diagnosis, but many people on the spectrum have at least some sort of sensory issue from hyper to hyposensitivity.  The fact that the sensory issues coincide with these other challenges is significant and worth being part of a ‘label.’

And it cracks me up when people act like labels are just a fad or the easy way into services.  As if labels are fun!  Weeeee, let’s go to the developmental pediatrician today and get scripts for occupational, physical, speech therapies! This is AWESOME!

Um, no.  But the label does open up doors to services… because the kids who are diagnosed with autism need the services.  How does that not make sense to people? A kid needs intervention so much that they are diagnosed with autism or a related pervasive development disorder… and this is bad?   This is bad that children and people of all ages are then being cared for the way they should be?  No, this is good.  And it might be that this ‘epidemic’ is partly explained by providers understanding children and developmental issues better than they used to understand them.  Identification might be better.

But that’s not the end all be all of this ‘epidemic.’  I’m telling you, I grew up in America… I went to public school, and I didn’t see the same issues facing children when I was little.  I have an exceptional memory, but I don’t remember a bunch of boys who could have been labeled with autism who were instead “just trouble makers.”  (And I also contest that the kids of my era who were “so lightly diagnosed with ADD” had serious challenges in school and needed the services they received.  ADD isn’t a myth, either.)  There weren’t a bunch of kids sitting there unable to pull up their pants or answer to their name or walk into the restroom because of the sound level of flushing toilets.

I have seen quite a few children with these issues now without even looking for them.  I find it a little odd that most of the boys I know who are in my child’s age range have some sort of developmental anomaly, whether it be a speech delay, sensory challenges, strange levels of anxiety or something else.  Something seems amiss here.  Sometimes I wonder if the human race is simply changing, maybe something in the environment is changing us, maybe we are adapting to something… I have no idea what, but it is not an over diagnosis thing.  I just don’t believe it, and I am one skeptical lady.

Most importantly, I want to emphasize that I do not write this with anger at autism or my son himself.  I love my son with such passion that I can become quite zealot-like about autism.  I am passionate about my boy and the challenges he faces because to some degree they make him who he is.  And he is beautiful just as he is.  He is wonderful and brilliant and adorable.  He is diagnosed with autism not for the sake of ease or fads or fun.  He is 1 in 54 boys in NJ for a reason.  There’s no joke about it.

We’ve Wandered to ABA.

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Wandering and Autism Spectrum Disorders go hand in hand and make for one major safety issue.

When you see us at the playground, you might think I am a ‘helicopter’ parent to some degree.  I never intended to be that way– sure, I am a worry wart, but I believe in capable independent children.  Things change, though, especially when your little dude doesn’t respond to his name, use functional speech, show you things of interest or follow directions in a timely manner.  Safety issues in public places start to arise over and over again… you start to helicopter.

Most children sort of wander in a sort of rubber band pattern, stretching far enough away they turn back to a parent and return.  Our G literally tried to wander into pitch darkness at an evening hayride last Fall.  My husband was loading up the car, and I was in the middle of nursing baby G.  And things like that could happen all the time, but we spend an exorbitant amount of energy on preventing emergencies.

Because he has, as long as I can remember, been able to unlock doors and open them, and with his propensity to wander, even family parties become stressful in ways one might not expect– we spend so much time knowing where he is every minute.  “Are you with him?”  “Can you see him”  “G?  G?!”  We sound paranoid, but he hates crowds, having to engage in conversation, and he has a very poor ability to keep his sensory system regulated.  LEAVING a party quietly and wandering away would be extremely enticing to him.

And now we’re in terrible two-ville, and holy moly this is not fun.  Some of it could be residual adjustment and stress from starting his transition to preschool program… but we hear “No” at every turn, he hits me (he’s so little it doesn’t hurt), he knocks down his baby sister if she so much thinks about moving toward a toy of his preference, he throws things, he has sensory meltdowns, there are issues with self injury… ugh, it’s a mess.  He is truly, truly a sweet kid, and CAN be the best-behaved child in a room, but he is having a rough patch that is getting out of hand.  His communication limitations and very immature socio-emotional level (for his age) make for much frustration; it’s hard to balance his very diverse set of skills in my head (ya know, like he does math, but he cannot follow a direction, and can he not follow because he is having a sensory moment? a behavior problem? a processing problem? a focus problem? confusing).

It is good that he is acting out on one level because he has a sense of self, and that is great in terms of his development, but no matter how consistent I seem to be with discipline and behavior plans… it just isn’t working.

The behavior we’re facing right now makes things like wandering that much more of a concern so we are stepping up our game.  It’s time to make our home safer for him.  It’s time to pursue an intensive Applied Behavior Analysis program.  We’ve loved Floortime, and we are continuing to learn and grow our relationship through play, but we are needing something more.  So off we go down another new road… we’ll see.

The 2012 Awareness Post

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I am a failed fellow.  As in, I joined the New York City Teaching Fellows program to teach special education, and then I quit.  There is truly a lot that went into my decision to leave the program including a death in the family, depression, and a myriad of other things.  But the thing I remember saying to my husband over and over as I left the program was this:

“It’s not like I don’t want to work with special needs children.  It’s that I love them all too much, and it hurts.  I just can’t handle it as a teacher.  I think I could handle it as their Mom.”

It’s interesting how life’s journey changes and curves as we grow.  I never once thought I would have a child diagnosed with autism.  I remember being pregnant and very briefly thinking about parents with special needs children and thinking, “How do they do it?” as if our child would never be a special needs child.  It wasn’t like I thought we were above it or something–nobody is ‘above’ anything; it just didn’t dawn on me that there was a chance for something in our lives to be so unique.

I look back at when I left the teaching fellowship with a sort of irony because I walked out of that opportunity and attempted to figure some things out with my professional life, and lo and behold, we found ourselves expecting our son.

It’s like I literally left teaching special needs to raise special needs.  Is it a coincidence?  Sometimes I think not.  And I think that if there is some sort of plan out there for me, and this is what I am supposed to do, then I am okay with it.  My son– and my daughter– have filled my heart with such tremendous joy, and so many amazing adventures await us.

I’m writing about all of this because of Autism Awareness Month.  I’m writing this because I think many of the people who read this blog might not even have children yet, and I want you to be aware… you could someday be a special needs parent, maybe an autism parent.  And you can be awesome at it.