Take the Time

numbers-time-watch-whiteThe other day, I answered a phone line that I don’t typically answer because my co-worker got called away from her desk a few moments before.

The woman on the other end began to ask about the size of the boats we use and ended by explaining, “My son loves the water, you see, but he’s terrified of boats.  He’s on the autism spectrum.”

For a split second, I had a choice.  I could identify myself as someone who could sympathize on a very real level, or I could answer her question simply, and get off the phone quickly to answer another call.

“I totally understand,” I said.  “My son is on the spectrum, too.”

Come to find out, she had recently moved to the area with her family, and was looking to connect with other families, specifically with the aim of working to expand services for our kiddos in our area, because they really are dismal.  We chatted for a good ten or twelve minutes, and exchanged phone numbers.

Since then, we’ve friended each other on Facebook and connected again via text. I hope to meet her and her family soon, and introduce them to some of my friends and their families so she can start making some connections in the area.

I know that sometimes we get tired of carrying this mantel of “autism mom,” and sometimes we just don’t want to see another news article about a possible cause.  But I’m glad I made the choice to identify my true self.  Two years ago, I was where she is now, freshly moved to a new state and trying to find a new community of support and advocacy.  If we don’t take the time for each other, who else will?

Advertisements

Autism Awareness, Acceptance, and Advocacy

Well, it’s April kids.  It’s Autism Something day and month, depending on who you ask.  It’s such a controversy in our community, and it doesn’t even need to be.

Yes, we still need awareness, as is evidenced in our daily interactions with people who just don’t get it yet.  How?  I don’t know.  Maybe they live under rocks.  Maybe they are in denial.  Maybe they are just mean jackholes.  I don’t care.  But I will continue to attempt to enlighten them about my son and his buddies.

celebrate neurodiversityYes, we definitely need acceptance.  Yesterday, you read about someone who screwed up our Friday morning (and added a dose of anxiety that will last for the rest of the school year).  She definitely needs to find some acceptance real fast.  From kids who bully our kids, to teachers who still don’t know how an IEP works, to potential employers.  The world needs to hurry up and get with the program because we are definitely not in the acceptance stage in this society yet.

And yes, we need to advocate for our kiddos, and let them advocate for themselves.  Yes, adults on the spectrum need a national platform, and need to be included on the boards of their own nonprofits.  They need opportunities to show the world of what they are capable, and the skills to communicate their needs.

So whether you light it up blue, or walk in red, just be yourself in gold, or decorate with puzzle pieces, please realize we can’t do this alone, and we can achieve so much more as a cohesive unit.  Let’s agree to disagree on a few things, and consolidate our goals so that we can get to a point where everyone is aware, everyone accepts, and there is no longer a need to advocate.

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part II

I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, hireasons thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 32 asks about what those with autism see first when they look at something.  Naoki reinforces what I have heard in many places, that those on the spectrum see the trees first, and then the forest; the details before the whole.  He also says they tend to “drown” in the particularly striking characteristics of those parts, and it tends to be harder to see anything else. If someone you love is on the spectrum, you will have, no doubt, experienced the attention to detail.  The Boy is always drawing my attention to some small part that I never would have noticed without his help.

Question 33 asks about appropriate clothing, and why this can be a struggle for those in the spectrum.  Naoki says they know and understand why we wear the things we wear, but that they “forget” what is appropriate, and how to make themselves more comfortable. He also explains that those who choose to wear the same thing each day (we have had our battles with this, for sure!) feel like their clothes are an “extension of our bodies,” and a guard against changing situations.

Question 34 asks about perception of time. Naoki says, “the fact that we can’t actually feel it makes us nervous,” and this makes perfect sense to me.  Timers help many on the spectrum have a sense of passing time, especially those that are visual in nature. And because the future is uncertain, it is a cause for a great deal of anxiety.  This is one of those answers in this book that just “clicked” for me, a true “A-ha!” moment.

Again, this book is a source of inspiration and wonder for me, and may be the closest I’ll ever get to reading The Boy’s own mind.  Not every person on the spectrum is the same, but these answers are food for a great deal of thought, and foster greater understanding and patience between me and my son.  I highly recommend this book.

5 Ways Those that Diagnose Autism Could Better Help Families

If you read any narratives or stories about how children or adults have been diagnosed, you will begin to detect a pattern.  And it’s not a good one.  “Your child has autism.  Have a nice day, and don’t forget to pay the lady on your way out.” The Boy was diagnosed eight years ago, and unfortunately, this pattern does not seem to have evolved at all over that time.  It’s absolutely criminal.

In order to get a bona fide diagnosis (one that will qualify your child for an IEP), you must see a certain type of mental health professional.  Psychologists are doctors, too, and I don’t understand how sending someone off with a diagnosis and little else is aiding anyone’s mental health.  Because there are only certain professionals in any community that can even provide this diagnosis, I suggest that they could be doing so much more, in collaboration with the people and groups that can actually provide services that will help a family navigate a diagnosis of autism.

  1. The Psychologists and doctors who provide these diagnoses need to form a relationship with the local schools, and there needs to be a liaison from the school district that is willing to be the point of contact for parents with questions about how a diagnosis of autism will affect their son or daughter’s schooling.  It is not sufficient to have a list of names and phone numbers on a piece of paper to hand to people, but rather a name and phone number (lists are intimidating and unreal, while a single name is much easier to humanize), and an assurance that this person will be contacting them to see if they need help.  Don’t put the burden on the parent who has never even contemplated some of the next steps.  Put it on the professionals who are in a position to help.
  2. In many states, a student is automatically placed on a social worker’s caseload when the team develops an IEP.  A social worker should also be a point of contact as soon as a child is diagnosed.  Too often, parents not only need information, but they need help processing the diagnosis themselves, and understanding what it will mean for their lives, both short and long term.  There are also inevitably parents who will be in denial, as well.  Having a community of professionals reaching out to you, providing support and information can only help.
  3. The psychologist should also provide more than a pamphlet or business card with the local Autism Society’s number on it.  Again, there should be a liaison from the local chapter of the Autism Society who offers to mentor parents, and again reaches out to the family, even if they don’t make the phone call themselves.
  4. When The Boy was born, the hospital put together a “parenting” group of several families who had had a first child around the same time, run by a more experienced, volunteer set of parents who would host monthly meetings on topics that are commonly on brand new parents’ minds.  Why not form a similar support group for parents of children who are all diagnosed around the same time?  Just like those with brand new babies and no instruction book, parents of kiddos on the spectrum are just as bewildered, and to have a group of other parents who are going through the same things would mean a world of support to these folks.  If our hospital could put it together for new parents, I don’t see why mental health professionals who diagnosis spectrum disorders couldn’t do the same.
  5. Parents should also be connected with an advocate, even if the child is still a toddler.  While it is a great idea to have a personal connection to the school system, one has to remember that schools don’t have much money, and if they can save money by not offering a service, they will.  Indeed many times, parents aren’t even aware of the types of services schools can and should provide.  I worked for a school district that encouraged its special education teachers to gloss over any mention of extended school year services (ESY) during IEPs, and as a result didn’t run any type of an ESY program.  A personal connection to an advocate will begin the process of educating the parents about their own child’s educational needs, sometimes in spite of what the school may say they need.

I think we have found that it really does take a village to raise a child, even more so a child on the spectrum.  Why do we continue to make every parent with a newly diagnosed kiddo re-create the wheel?  The trails left by those who have gone before are there – I know because we made them.  But they need guides to find them, and it begins with the conversation that happens immediately after the psychologist says, “He has autism.” Maybe there are some health professionals already doing this.  I sure hope so.  If their aim is to truly help those in need, one would think they would have already thought of these ways of connecting with others in the community who can provide a support network – ready guides to help parents of the newly diagnosed to find the paths blazed by those of us who have already done it the hard way.

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part I

reasonIt’s been quite a while, but I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

When asked (Q25) Why he jumps (or stims), Naoki says that those on the spectrum “react physically” to emotions, and that their bodies at that point do not allow them to move as they wish.  Jumping allows him to shake “loose the ropes that are tying up my body.” This is an interesting perspective and while it goes along with the accepted understanding that stimming “feels good,” it adds a piece that wasn’t there before – it feels good because it is an attempt to free oneself from a body that doesn’t react exactly the way one wants it to.

Question 27 asks Naoki why he covers his ears.  He explains that it isn’t the volume, but rather that the multiple noises become disorienting and scary.  Covering his ears restores his sense of where he is, and allows him some control over his surroundings.  I think we often forget what a struggle it is for many of our kiddos on the spectrum to process sensory information that has absolutely no effect on us neurotypicals.  Add that to my list of basics I tend to forget!

In his answer to Question 28, Naoki reaffirms that many on the spectrum have no sense of where their limbs begin and end, and that results in awkward movements and the inability to know when he’s even stepped on another person’s foot.  This is why I think The Boy loves water as much as he does, because it provides that constant sensory input to let him know where he begins and ends.

Question 31 deals with eating and why some on the spectrum are “picky.” Naoki says he doesn’t really have this issue, but understands that for those that do, “only those foodstuffs they can already think of as food have any taste.”  Everything else, i.e. new foods, are received as play-food that doesn’t sound too tasty.  He hypothesizes that it may just take more time for them to “appreciate” the taste of unfamiliar foods.  This explains a lot. Often, if I can draw a connection from one food that The Boy likes to eat to another unfamiliar food, he is more willing to try it, and this explanation is a pretty good one, I think.

There are a few more questions in this section that I will tackle next.  This is one of those books that is great to read, and re-read again and again, as you’ll pick up something new each time, I think.

Posting Embarrassing Stuff About Our Kids on the Spectrum

So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be.  I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs.  Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see.  This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do.  No clear pictures of faces, no names, no locations.  There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more.  Mostly about why I started this blog in the first place.  It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face.  This is apparently still a problem.  People are given this life-altering information and no help.  I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing.  Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web.  But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy.  After all, I am his mom, and capable of making lots of decisions about his life.  As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal.  Thoughts?

5 Tips for Autism Parents for “Dealing with the School”

autism & schoolI’m a latecomer to this.  We were very lucky with The Boy’s elementary school, and his elementary teachers, in particular his ASD teachers who really acted like caseworkers, made sure everything ran as smoothly as possible.  They advocated for the kids with other teachers and with administration, they handled little problems as they came up, they didn’t think the world was ending with every not-so-good day, and thank goodness they were the foundation, the bedrock if you will, of The Boy’s education.

They spoiled us, but they also showed us how it was supposed to be.

When we moved south, I was shocked at how bad a school could handle it’s special education students.  So I fought to get a better placement for The Boy, because I knew it existed, and I knew we would lose him if we didn’t.  And we got it.

Better, but not perfect.  If you follow my blog regularly, you know that even now we have issues with certain teachers who just don’t get it, strange schedule changes that don’t make sense, and administrators all too quick to wash their hands of anything that comes up. In short, I still have to “deal with the school” from time to time, and the following are some of the best strategies I have found over the years for getting what you want from them.

1.  Listen and watch to determine who your allies are.  Before we moved here, I contacted the local autism society who put me in touch with the autism specialist for the county. She was supposed to be this fantastic resource, but I’ve watched her and listened to her, and to this day, I don’t consider her an ally.  She almost prevented The Boy from switching schools, and I’ve seen how she has handled other situations with other parents, and I’m not impressed.  On the other hand, through that placement process, I was impressed with the assistant superintendent for special education – she cut through the bull on the second day of our IEP meeting (with 14 members present), and brought some chart paper to illustrate that this really was a no-brainer, and the best placement was at his current school. If you watch and listen, you can determine who might be a good resource, and someone to turn to when something’s not right.

2.  Never trust anyone 100%.  Unfortunately, you always have to be wary, because in a school setting, people are not always at liberty to say what they really want to say, and sometimes, due to the nature of autism, they will bend the truth about something that happened (or didn’t happen), or not tell you at all.  A friend recently had a conference with two teachers, one of whom was a revered special ed teacher.  The friend and her son walked into the meeting, expecting to meet with cooperative teachers trying to find a solution, and the revered teacher began to yell at the son for disrespecting his mom at home.  My friend was so taken aback, she asked her son to leave the room, and in her words, “if that was supposed to be support for me, it definitely didn’t feel like it!” People are people, and they make mistakes.  They also change, and teachers get tired. It’s a tough lesson to learn, but just because you could depend on someone “on the inside” in the past, doesn’t mean that will always be the case.

3.  Don’t belittle the teachers.  I read on another autism blog’s Facebook page recently something about actual quotes from IEPs she’s been involved in, and it said something like “I am a taxpayer and I pay your salary!”  Ummm, no.  As a former teacher, this is just about the worst and most alienating thing you can say. Many times, teachers’ hands are so bound by mandates and the wishes of the district and administration that they have little to no power, even over what happens in their own classrooms.  Saying things like this ensures that they will not be your allies, and that can turn out really badly, in the end.

4.  Keep a poker face.  It’s ok, and even advisable to play dumb from time to time.  Earlier this year, The Boy got in trouble for making noises when entering his last class, which is supposed to be a social skills class with his autism teacher.  She had decided it was going to be a silent class, and you can imagine how well that went over with The Boy, who understandably feels like he can let loose a little at the end of the day in his little autism community.  And his teacher escalated the situation, making him more and more angry and upset.  She emailed me with a long list of all the things he had done.  Rather than retaliate, and explain to her about autism (as she clearly had forgotten all of her training for that hour), i suggested that The Boy may have needed to *insert any usual autistic reaction here*.  I could have gone off on her, asking her what the hell she was thinking, and didn’t she know that kids on the spectrum stim and make noises, and to make a social skills class a silent period is the definition of stupidity, but I didn’t.  I simply let her know that The Boy may have had a hard time with it.  Don’t tell them how to do their jobs, even if you know better than they do. Play dumb, and remind them that your kid is a kid, and will make mistakes from time to time.  Together we have to teach them what’s appropriate sometimes.

5.  Pick your battles.  Most autism parents are very familiar with this, but realizing school is not the be-all, end-all was a big a-ha moment for me.  I don’t care so much about grades, because they are based on a standardized norm, and my kid is not standardized, and definitely not the norm.  I care if he learns the content more, but again, our home life is more important than the Types of Energy and the Pharaohs of Egypt.  I have given up on the science teacher this year, who rather than modify assignments, is choosing to give my child grades based on effort.  I can’t teach him science, so I guess he just won’t get much out of the class this year.  Disappointing, but not the end of the world.  The teachers (even the autism teacher) are still giving us only a day’s notice about tests and quizzes, so when that happens, we do what we can but I don’t stress. He usually does pretty well, and what do tests show, anyway? Sometimes you bang your head on a brick wall until you realize it hurts, and then you move on.

Some of these tips seem contradictory, but they aren’t.  They’ve all helped me navigate for better resources and understanding for The Boy, and I hope you can use them too.  Do you have any tips of your own?  Share them in the comments, please!

Shared on amamasstory.com – visit her Mama Moments Monday Link-up!

This One or This One?

As part of the “Wishing Away the Autism” debate, one of the posts I read argued that we show too much of a positive side of autism to the rest of the world, and that we need to share more of the horror stories, that we, the autism community do ourselves a disservice by showing the nicey-nice stuff because people are less likely to support funding for research and resources if autism “doesn’t look all that bad”…

Well.

Which is clearer?

Sounds like a sales pitch to me.  I guess I just don’t have patience for anything less than the truth, which is why I share the good, the bad, and the ugly on this blog.  So that others on a similar journey, or even one that is not similar in the least can share in my hope, commiserate with my frustration, and celebrate our milestones right along with us.

We are all people.  When you focus on showing society that autistic children and adults are real people, you will have accomplished something.  No one wants to be sold a bill of goods.  No one wants to see  one side of the story.  So why would we, the autism community, even try to do that?

Write and share your experiences, take those photos and plaster them all over your facebook wall, and bring those kiddos with you everywhere you go.  By doing so, you are showing that our little ones (and not-so-little ones) are a part of society, that they are human, that sometimes they need help, and that in many ways they are just like everyone else.  THAT is advocacy.  Participating in society, carving out a place for them, even where they don’t quite fit.  THAT models for the rest of society how our kids should be treated, THAT will show them why we need funding for research and resources.  THAT tells our own kiddos that they have a PLACE in our society, and THAT creates self-advocates, which is the name of the game.

 

The Problem with a Spectrum Disorder

Spectrum4websiteEval“The difference between ‘high functioning’ and ‘low functioning’:high functioning may mean your child’s deficits are ignored and low functioning may mean that your child’s assets may be ignored.  It is our job to educate and make the community aware of our child’s strengths.  Inspire others to do the same.”

Picked this up on facebook (someone point out the original attribute if you know).  These “functioning” classifications have always irked me a bit, but in spite of that, part of me says, “Hell, yes!  This is the truth!”  And I suppose it is for many on the spectrum who are clearly “high functioning” and many who are clearly “low functioning.”  It’s a paradox for kids (and adults) who “pass” for neurotypical – People see no tangible issues and have expectations that can be unreasonably high, as well as for kids (and adults) who clearly have issues, and as a result people have expectations that are unreasonably low.

The other part of me says, “And the kids who are in between are the most misunderstood,” because that is The Boy, and he is misunderstood.  He’s bright and clever, and with proper supports, is very capable of A level work in school.  But he needs the supports, and is a good bit away from “passing” for neurotypical.  People see his issues, and have no idea what to expect.

Here’re my two cents: While it is important to enlighten the community about typical behaviors, commonly used strategies, and the like, we must also hammer home that every child has different strengths and “areas of opportunity” – nothing is as it seems.  No child on the spectrum is what you expect, and only by getting to know each individual will you begin to understand them, their struggles, their triumphs, and their potential.

Don’t Knock Awareness

autism awareness ribbon

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine.  And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone.  We need armies of people to help us demand that these basic needs be met.  And we don’t have armies, yet.  We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”.  Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it.  We cannot rely on large national nonprofits to do the work for us.  We have to get our kids out there.  We have to make our presence the norm.  We have to be unapologetic.  We have to use every teachable moment.

Doing all of that creates awareness.  And awareness is where armies are born.