Announcing Dr. Noa Hannah Ph.D., CCC-SLP, BCBA-D

Malama Pono is very excited to introduce Dr. Noa Hannah, new Clinic Director for Malama Pono Autism Center. Dr. Hannah has a wide range of experience including professorship at University of Washington, Communication Specialist at Seattle Children’s Hospital, and most recently serving in a director position at KGH in Madison Wisconsin. 

Noa Hannah Ph.D., CCC-SLP, BCBA-D

Noa Hannah Ph.D., CCC-SLP, BCBA-D

Dr. Hannah has the clinical and leadership experience to guide Malama Pono in continuing as a leader in quality and comprehensive care for children and families impacted by autism. Her passion is in early language acquisition and she brings latest technologies and clinical interventions to this important developmental area. 

Please come by to meet Dr. Noa Hannah and learn more about Malama Pono Autism Center!

When I realized why my son melts down at home and not at school

This is a blog post written by a mom and  shared on The Mighty, one of our favorite websites. Check it out here  themighty.com

Tonight my son walked through the door from school, and immediately I knew. He didn’t have to say or do anything. I just knew.

Call it mother’s intuition, or call it years and years of practice, but I knew something was wrong. It was the delayed effect. My son has had a tricky day at school. He has held it together for nearly seven hours. Then he walks through the front door, and bam!

He’s somewhere safe and familiar, and he can’t contain the pressure anymore.

It creeps out of every fiber of his being. His face is tense, and he has red cheeks. His body is stiff and awkward. His words are fast and loud, and he’s agitated. He’s hungry, he’s not hungry. He wants a snack but not what’s in the cupboard. So he gets angry and swears because he’s not in control of his body anymore. He wants to say hello to the dogs, but their overexcitement is too much for him, so he’s too rough with them and he gets cross with himself. I ask him how he’s feeling, and it’s like there is a red fog surrounding him. He can’t process what I’m saying. His sisters walk in chatting and laughing. They sound like a crowd of people to him, and he shouts to them to be quiet. They snap back at him as only sisters do, and wham — the volcano explodes. We have liftoff.

Meltdown. There’s no turning back now. It all has to come out.

Then comes the exhaustion — for him and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I. It’s so hard for all of us, but I can’t even begin to imagine how it must feel for my son.

As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.

He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.

My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed.

The can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside. This creates a situation that can put incredible pressure on families — especially if teachers don’t understand or believe what the parents are telling them. So let’s think about it this way for a minute…

Imagine yourself as a bottle of pop. Your ingredients include autism, sensory processing difficulties, ADHD and a hidden speech and language delay. The world’s a confusing place, and your difficulties are largely hidden to the wider world, so not many people understand things from your perspective.

This is your day:

Going to school is just one big worry for you… so give that bottle a shake!

You get to school and your teacher says, “Let’s start a new topic.” What does that mean? … Give it a shake!

You don’t understand what you have to do… shake it up!

You make a mistake… shake, shake, shake!

The lights in class are buzzing, and it’s annoying or painful… shake it a little more!

It’s assembly. You have to sit still while your insides are wiggling and jiggling around… shake it up!

The timetable changes and it’s not math like it should be, it’s now music… and shake again!

The car gets stuck in traffic, and the wrong radio station is on in the car… that’s a few more shakes!

You get home and the lid blows off with the pressure!

That’s the delayed effect. It’s a real thing. The times over the years I’ve felt so confused and isolated when teachers have said to me, “Well, that is a surprise. We don’t see any of that here at school.” Or I’ve heard, “Well, he can behave for me, so maybe you’re being too soft on him.” I spent many a sleepless night wondering if it was me. Was it my parenting? But I am his mom, and my gut instinct is always right. I knew there was something my child was struggling with, and all I had to do was understand what his behavior was telling me. My child explodes at home with me because I’m his safe place. I am predictable and calm, and he can really be himself at home. He is fully accepted at home.

So this tells me there are many things that can be done to reduce this build-up of stress hormones for children like my son — making them feel more safe and accepted for who they are. And that means really embracing their individual needs. Not just trying to fit a round peg into a square hole.

 

Autism Month: Different People, Different Stories

To honor April, recognized as Autism Awareness and Acceptance Month, we are going to share several contrasting stories about autism. Our intention is to offer different glimpses or takes on what autism is and what it means to have autism.  Our message in this blog series is simple:  Autism: Not all bad, not all good.

Having an autistic child wrecks your life: A Friend's Perspective

A woman wrote into the Daily Mail, a British newspaper. She titled her letter "Why can't we face the truth: Having an autistic child wrecks your life."

If you are accustomed to reading feel-good stories and politically correct puff pieces, this may be offense. We decided to share it here because it is real. It is an honest observation that is probably shared by many a friend or neighbor who have watched a family wrestle with autism.  

"Thanks to a moment of everyday terror, I think I knew before anyone else. My friend's two-year-old had climbed upon a chair from which, with customary toddler clumsiness, he fell. 

Like all children, he managed a second of stunned silence - then howled like a banshee. Like all adults, I rushed to pick him up, to cuddle, to soothe. 

What was unexpected was his response: visibly fearful of my touch, he kicked my belly, disengaged himself and ran away

I added that to the list I was already mentally composing: no eye contact, ever. Not even with his mum. No shred of attachment to toys, pets, people. Obsessive, repetitive behavior. Crazed by the sight of other children. Hmm. 

By his fourth birthday, still with nappies, but without speech, everyone else knew, too. 

Tom was - I mean is, and always will be - autistic. I've been thinking a lot about Tom, who's now seven, as the debate rages over the possibility of a prenatal test for autism, with abortion then optional. 

And, so far, most of the argument leans towards such a test being undesirable and unethical. 

Brave and devoted mothers - notably Charlotte Moore, whose book, George And Sam, about her two autistic sons, is immensely powerful - have clung to the positives brought into their lives by their children. 

Backing the emphasis on the positive have been those who point to the frequently high intelligence of the autistic savant, as if we are talking about phalanxes of Mozarts and Einsteins. 

How much poorer we would be without, say, the astonishing brain of Dustin Hoffman's Rain Man!

Who would or could babysit this child?

Well, maybe. But not as poor as Tom's family: three generations of lives - I include his own - wrecked, for ever, by his cussed condition.

His parents, let us call them Cathy and John, bear the brunt. Immediately after diagnosis, she beat herself senseless with blame; so many theories, each making it her fault. 

Should she have allowed her son to have had the MMR jab? Was it, as some said, a behavioral disturbance caused by 'bad' parenting? 

Once, she even convinced herself (from something she'd read) that it was mercury poisoning from eating tuna during her pregnancy. 

Theories, however, were soon to defer to practicalities. They strove for a normal life: simple things, such as going shopping together. 

But with the best will in the world, how many shops - or, indeed, how many customers - are going to tolerate a child who screams, bites, defecates and destroys everything within reach?

Besides, dangers lurk. Last time I bumped into them in a supermarket car park, Tom was bawling hysterically. Why? Because he had seen a bird. So, mostly, Cathy and John stay at home.

Both their careers are over - not, as for many with small children, on hold for a few years. Each knows that neither will work full-time again. 

There have been attempts with special schools, but none succeeded. Sanity is preserved by each parent having a hobby (fishing and tennis), so one babysits while the other takes a break. 

They rarely go out together, for who else - other than one plucky grandmother - would, or even could, babysit this child? 

Worst of all, the other babies, of whom Cathy and John had dreamed, have been ruled out. 

First, because they simply do not have the time to give to another child. And second - I admire them for thinking of this - they do not feel it would be fair to raise a child already programmed to be guilt-tripped, whether by itself or by others, into taking on the role of carer when Cathy and John are no longer capable. Or dead. 

This, then, is their life sentence: to worry, every hour of every day, what will happen to Tom when they are gone. 

Meanwhile, Cathy's parents - both exceptionally youthful at 60 - have had their own plans turn to dust. 

They had looked forward to more time together in retirement; in fact, they have less. 

Granny Helen spends all the time she can, maybe more than is good for her, trying to help out: a little childcare here, a spot of shopping there. 

The carefully saved nest egg, intended for the small luxuries that make ageing more enjoyable, is rapidly depleting. 

With Cathy and John unable to hold down proper employment, it is Helen who chips in for the unexpected bill, the car repair or the TV licence. 

Tom had ripped out a handful of her hair

And, please, don't ask about state benefits for carers: these are so meager that if it were not for Helen, Cathy could not even afford the mobile phone she must have with her every time she steps outside her front door. 

The trouble is that Grandpa Bill is not quite as happy as Granny Helen for their money to be spent this way - so there are new tensions there, at a time in life when they need them least. 

Yet of the three generations, it is Tom who suffers most. And he's getting worse. As Helen said, only last week: 'We used to have a little autistic boy who was often happy. Now we have one who never is.'

All three generations set off in a bold attempt at a holiday over Christmas. Not a resort, bustling with strangers; quite impossible. But a rented house, just the five of them, to let Tom feel the warm sun on his face. Well, it was a nice thought. 

I phoned with New Year good wishes. Helen answered, in tears. Her head hurt, she said; Tom had ripped out a handful of her hair by the roots. Bit her, too. But I couldn't hear what she was saying for the insistent shrieking in the background. 

Waaah! Waaah! Waaah! Goodness, I said. How long has he been doing that? Since they left home, two weeks earlier: through the airport, on the plane and 18 solid hours a day. 

They had to have him sedated just to get him home again, which Cathy hates doing. So that's it for holidays, breaks, respites or breathers. Again, for ever.

Autistic children are not all the same

And the question they are starting to ask is too terrifying for words. If this amazingly beautiful child (they often are), possessed by misery and rage that no amount of expertise has relieved, is this destructive and violent at seven, then how much worse will he be at 17, when he's that much stronger? 

Last year, I gave them Charlotte Moore's book, thinking, foolishly, that it might afford comfort. 

It actually meant nothing; they simply could not see Tom in George and Sam. Autistic children, like any other children, presumably reserve the right not all to be the same. 

But if there's a chance of a Tom, and a chance of a test to indicate his condition, then - with the obvious proviso that it never be mandatory - I would urge its opponents to think less of Mozart and Einstein and more of otherwise everyday people: Cathy, John, Helen, Bill. And Tom. 

I would not be impertinent enough to ask Cathy if she wishes she'd had such a chance.

In any case, that is a difficult question after the event: it is hard for a mother retrospectively to wish away a living child who, come what may, she loves. 

But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom's had been a life unlived? 

Unequivocally, yes."

Here's a link to the original newspaper posting:

http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autistic-child-wrecks-life-.html

Autism Month: Different People, Different Stories.

 

To honor April, recognized as Autism Awareness and Acceptance Month, we are going to share several contrasting stories about autism. Our intention is to offer different glimpses or takes on what autism is and what it means to have autism.  Our message in this blog series is simple:  Autism: Not all bad, not all good.

15 Reasons autism is awesome:  From someone who knows.

This post is from Kerry Margo, an award-winning autism advocate diagnosed at age 4. Now he is a graduate student in Strategic Communications and Leadership at Seton Hall University.  He posted this short essay on the blog www.lovethatmax.com.  

"My name is Kerry and I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), a form of autism, when I was 4. As a kid, I had sensory integration problems, motor deficiencies, speech delays, and social awkwardness. I could not even begin to tell you the stories of how aggressive I was. Lashing out was my communication and it led to emotional issues for years for me.

Over time though things did progress. The anger of not knowing the world and how to express myself became a place of understanding. For a long time I thought the reason why I was able to get to where I was today was because of my therapies (I had physical therapy, occupational therapy and speech therapy from 6 to 18). Another factor I thought contributed to this was because of my parents love for me. Above all though what really set me a part and made me begin to not only see life differently but also understand the world so much more was a positive attitude. Once I stopped beating myself up for not being the best talker, the best writer, or even the best looking guy, I began to focus on who Kerry was today and what he did well.

I can’t tell you exactly when I started to think in this mentality but when it hit me I was on a different path than I once was. Over thinking about what I didn’t have turned into self-reflecting on what I did have. I began looking at positives such as my great memory for sports. I began looking at my love for movies and turning that into an acting career (which would then begin my role as a national motivational speaker today). Having this attitude led to me graduating grade school, high school, college and now fulfilling my dreams of getting a masters degree in Strategic Communication and Leadership to become an advocate for the future generation of Kerry Magros out there.

For those readers out there, especially those parents who are reading this, what I hope you take out of this is that the power of a positive attitude can do wonders for not only your life but also the lives of your kids.

I hope everyone remembers that….

• Autistic people are gifted

• Autistic people can surprise you

• Autistic people can focus on certain interests for long periods of time

• Autistic people are passionate

• Autistic people are non-judgmental

• Autistic people are honest

• Autistic people are rarely boring

• Autistic people are special

• Autistic people are logical

• Autistic people are loyal

• Autistic people are interesting

• Autistic people are wonderful

• Autistic people are diverse

• Autistic people are imaginative

• Autistic people are unique, and as Temple Grandin says, “Different but not less”

Autistic people, no matter where they are on the spectrum and regardless of how many traits listed above they may or may not have, are just "people." People with weaknesses but also strengths, destined for their own greatness in the way they see fit. I hope we can all cherish these facts because if we can, our autism community would be even more phenomenal than it already is."

Autism Month: Different People, Different Stories.

To honor April, recognized as Autism Awareness and Acceptance Month, we are going to share several contrasting stories about autism. Our intention is to offer different glimpses or takes on what autism is and what it means to have autism.  Our message in this blog series is simple:  Autism: Not all bad, not all good.

Adults with autism.

Due in part to what we know about the importance of early intervention, there is great focus on children with autism. Seemingly unbeknownst to researchers, funding sources, and providers, these children actually grow to become adults.

A couple years ago someone posted a question on Reddit asking,

"What's it like to personally live with autism?"

Someone responded. And in true comment section style, it led to some great dialogue between respondents. Following is an edited-down version of the original response written by a man with autism "thj"

"I don’t have it as strongly as many, and your question is akin to asking a squirrel how it is to be a squirrel. The squirrel only has his own experience to compare with. Experiences will vary from person to person. However, I’ll give it a try…

In general…

  • Before you know you have it, you simply assume that you have an odd personality.

  • After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

  • You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.

  • You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.

  • You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.

  • You notice that everyone is more concerned with events among family and friends than you are. You don’t particularly enjoy Facebook. EDIT: But you do like how it lets you keep in touch with people while maintaining a safe distance.

  • You feel less worried about sharing private details with people, as they don’t embarrass you to the same degree.

  • You frequently forget that your words and actions could affect other people, and if you do remember, you often underestimate it. Other people assume that you are selfish, because they seemingly refuse to accept that a brain disorder can make you momentarily forget that other people have intents and preferences, and that this is different from being consciously and deliberately malicious.

  • You have some issues with the tone or the volume of your voice, as you may forget that not everyone in the room wants to hear what you’re saying.

  • You have more technical, geeky or obscure interests than others.

  • You really love cats, and find dogs overwhelming much in the same way you find people to be overwhelming.

  • You think parties and concerts are too hot, crowded and noisy.

  • You have only had short romantic relationships, if you had them at all, and they only happened in your mid-to-late 20s. You’re probably unmarried or divorced after a short marriage.

  • You much prefer to stay inside your house.

  • You really want people to notice you and your abilities (from a safe distance), but you aren’t so good at extending that to other people.

  • You like receiving clear emotional signals, since you’re not so good at picking up subtle emotions, but you are bad at sending these signals to others.

Sensory experience…

  • You notice that other people are less sensitive to heat, touch, noise or light than you.

  • You have trouble picking out voices in a crowded or noisy room. You sometimes find it difficult to understand voices on the phone.

  • You often completely forget about time and place if you’re enjoying something, and will often experience a level of immersion akin to that of a child watching an exciting movie, even if you’re an adult, and you’re merely building a model airplane.

  • You often remember that something happened, but not when it happened, or who said what. You get reactions from people when you can’t properly account for these things.

  • You remember all the mathematical powers of 2 up to 262144, but you can’t maintain balance on your bank account, nor can you remember to pay your bills.

  • You’re clumsier than other people.

  • You’re very concerned with details. You notice small mistakes everywhere, and they bother you until they are corrected.

  • You can’t sit still. You often shake your foot, bite your lips or fidget with your hands. Not doing so feels uncomfortable, because tension, anxiety or frustration builds up inside, and your body feels numb if it’s not moving.

  • You occasionally feel like acting like Jim Carrey, and contort your body and face. With your friends, you usually manage to fit this into the context of being goofy.

  • You tend to sit lopsidedly and lean on things, because this is more comfortable somehow. You might find yourself tilting head more often than others.

  • You may have some issue with controlling your food intake. I suspect that the feeling of satiation may be offset in some autists, and people with weight issues in general. EDIT: You may have a poor appetite instead. You are particular with the mouth feel of foods.

Emotions…

  • You have a full range of emotions, but you’re terrible at displaying them, so everyone, including the psychiatrists who define the symptoms, assume that you’re devoid of them.

  • The effect emotions have on your decision making is smaller. You may feel a certain way about something, but your logic will often override it. You accept uncomfortable truths, and may seem jaded. People will occasionally compare you to an old man.

  • You are a hard person to motivate. Most people are motivated by their emotions, but this doesn’t have much of an effect on you, so you’re stuck tickling your logical brain constantly, thus the preoccupation with obscure, nerdy interests at all costs. You have trouble keeping a job because of this motivational issue. You have perfect order in the computer programs you write, or your collection of Star Wars paraphernalia, but your apartment is a mess.

  • You’re prone to getting depressed, and find it hard to pull yourself out of it, much like you find it hard to take control of your life, and stop doing entertaining but useless things all day."

Here's a link to the original post http://www.reddit.com/r/AskReddit/comments/uuw5f/are_there_any_redditors_out_there_who_have_autism/

Look me in the eyes

Eye contact is a powerful human behavior. Not only is vision by far our most dominant sense, its development in our evolutionary history is one of the key functions that sets us apart from other animals. From across the room, across the street, or across a field we can read a lot about someone’s intentions in a split second.  Friend or foe? Safe or Dangerous? Interested or disinterested?

John Medina in his book Brain Rules points out:  “As babies begin to understand cause and effect relationships, we can determine how they pay attention by watching them stare at their world. The importance of this gazing behavior cannot be underestimated. Babies use visual cues to show they are paying attention to something –even though nobody taught them to do that. The conclusion is that babies come with a variety of preloaded software devoted to visual processing.”

So when such an important part of being human doesn’t seem to be working properly, what’s up?

Eye contact has long been a hallmark of autism. This is partly because it’s one of the earliest signs of autism (and has spurred a generation of anxious new mothers staring into their infants eyes), but also because it’s a symptom of autism that’s easier for people to notice.  Eye contact is such an important part of human behavior that we quickly become aware when we are around someone who doesn’t engage in typical social eye contact.  It’s hard to read that person, it’s more difficult to understand their intentions. We may even start to think we can’t trust them or they’re not being truthful.

So if eye contact is part of our genetic history and maybe even a preloaded behavior before we are born, why do children and adults with autism often not use eye contact the way others do? This has been a question with lots of debate over the years.

Do people with autism tend not to look others in the eye because it is unpleasant or they are disinterested?

How we answer this question is important to how we understand autism and inform how we might go about treating it.

The “gaze-aversion” hypothesis suggests that individuals on the autism spectrum are generally uncomfortable with the amount of eye contact others make. Some older children and adults on the spectrum report that eye contact makes them nervous, anxious, or generally uncomfortable.  Said simply:  It feels weird, so they don’t do it.

Alternatively, the “social disinterest” hypothesis speculates that individuals with autism neurologically have less need or desire for social interaction and thus are not interested in looking others in the eye and communicating on this kind of social level.  Said simply:  Connecting with you is not high on their to-do-list.

It is important to note that there are many people with autism who would reject one hypothesis or the other (and sometimes both). As the saying goes, if you have met one person with autism you have met one person with autism. However, science is slowly providing some answers to these questions.

A study published last November used eye-tracking technology to study how toddlers use eye contact in social situations. The study compared children diagnosed with autism, children with other developmental challenges, and children on a typical developmental trajectory. The results found that the two groups not on the autism spectrum made eye contact that was correlated to the emotional content of the adult in the room. When the emotional energy warranted eye contact, the children tended to make eye contact.  The children with autism however, did not change their eye contact patterns based on the other person in the room or their emotional expressions. 

It seems that the toddlers with autism made eye contact when they wanted to and it didn’t much matter what the other person in the room was doing.

This would seem to suggest that eye contact differences may be more about social disinterest. Children with autism might not have the same needs for social interaction and the social interests they do have aren’t expressed through eye contact.

There’s lots more to be discussed about this- including the role of anxiety in autism and how that might contribute to discomfort with eye contact. Some have argued that changes in how we use eye contact are not evidence of a deficit but instead signs of changing times. When one considers how often we are looking into someone’s eyes versus a camera, phone, or some other digital device- perhaps our friends on the autism spectrum are a step ahead of the rest of us.

These findings should also encourage us to consider the many other ways love and connection are expressed between humans and to remember that expressing needs differently doesn’t mean the needs themselves don’t still exist. 

The Hardest Thing

Sarah at thestayathomesoprano.com writes about her experiences as the mother of her oldest son Taylor. Who has autism. Her writing style is vulnerable and heartfelt, which is refreshing and worth checking out.

She wrote a blog post titled "The Hardest Part". where she points out that every stage of development has hard parts. This is of course true for all children not just those with special needs. It is also true that the hard parts look different for parents with a child with special needs.

Sarah's post shares her emotional process around knowing Taylor will someday need to go live in a group home. It is a heavy post. And it is very real.  Re-posted here:

"I just read a blog post where the author was asked to list the hardest thing about autism, and she said, people.  For me, the hardest thing changes as time and life change.  A long time ago, it was other people not being kind, instead very very judgmental. Later it was hitting and pinching.  Later still it was loneliness and so on.  Today, it is fear…pain. Fear of giving up, pain of letting go.

Many people have heard the song “Say Something” by a Great Big World and a cover by Pentatonix.  Most see it as a romantic or familial toned song.  I ask that you close your eyes and listen to it again, trying to imagine yourself as a mom who has to give up her young teen child (or any age, for that matter) to a group home…to live away from his/her family.  Imagine this is the first day of that chapter of their lives.  Imagine the feelings of failure, the guilt that overwhelms.  Think of the sadness, the loss, the dashed hope, the feeling of giving up. Think of them in the new room of their child. Imagine the car ride home with an empty seat in the back…

This isn’t an ‘if’, it’s a when.  It isn’t today, nor tomorrow, the next day, or the next.  I hope it’s later, not sooner, but it will happen.  This happens everyday.  Parents have to give up their kids to a group home.  Before people say something, I do know I didn’t fail.  I know I shouldn’t feel guilty, like a failure, or that I am giving up.  I know I’m not giving up.  I know it will be the best for him.  I also know it isn’t goodbye.  But it is goodbye to life as we know it now, and that feels like enough of a goodbye to me.  I know we can visit; I know we can bring him home to stay with us as much as we would like, but tell that to a mom who is giving up her baby, placed in her charge by God Himself.  No matter what I know in my head, I know my heart will wait until that time comes to start working to reconcile itself to believe what the head says.

On that day, when we are standing in the doorway of his new room, tears will flow freely.  Guilt will overwhelm.  My heart will be pleading with my non-verbal son “Say something!  Please!  Tell me you love me.  Tell me you know I love you.  Tell me we don’t have to do this.  Tell me you forgive me.  Tell me I didn’t fail.  Tell me you understand.”

I know it will be okay.  I know I will be okay.  I have faith in Jesus that He’s going to have it in his hands, have Taylor in his hands…have me in his hands.

But if you ask me today what is the hardest part?…. knowing this is my future."

A Call for Community

Dear parent who is feeling down trodden.  Dear parent who is overwhelmed and not sure you can go on. Dear parent who has lost a sense of yourself and given up on trying to find it again.  Dear parent who didn’t think having kids would be this hard, who thought your kids would love you back a little more. Dear grandparent who wasn’t planning on being a parent again. Dear parent who is tired of hearing how wonderful autism is and how special it makes people and that there will be special jobs especially suited for autism someday. In the future. Someday.

Dear parent who doesn’t want to see perfect children and perfect families and perfect birthday parties on Facebook anymore. Dear parent who left a full grocery cart at the store today because- well because that’s what you do sometimes. Dear parent who is tired of answering questions about why your child isn’t potty-trained, walking, talking, playing with the other kids, going to school, finishing school, or playing in the band.

Dear parent: You should know you are not alone. There are a great many parents out there who have similar struggles, doubts, and hard times. You are not the only one who has quietly wished they had not had children at all. You are not alone. The problem is simply, you are alone.

There is great strength and energy in community. Strength in doing something you typically do alone, with other people. We as humans are at our best when we are knit together with others.  Having a child with special needs often leads parents to isolate, withdraw, and have very little community around them.  After all, nobody would understand.

That is the risk. Maybe my child and family really are different. Maybe nobody else thinks the things I do. We let that fear keep us from seeking out others, from putting ourselves and our family out there for others to see.

Oh dear parent, you are not alone. There are many others like you who will benefit from your story and support as much as you will benefit from theirs. This life is not meant to be done on your own and you only add suffering to your pain when you go it alone.

This is your call to find community. To have an imperfect birthday party. To post a real picture on Instagram. To commit to a walk or a talk or a coffee even if it needs to happen on your kitchen floor.  What’s that you say?  Your house is dirty? You are not alone dear parent, you are not alone.

There are others looking for you. Don’t let the excuses your mind will create stop you from reaching out and finding the others who should be in your community.   

Welcome to Holland

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." 

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. 

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley

Are you Aware of Autism Yet?

It's April and we find ourselves once again in the middle of Autism Awareness Month.  Light it up Blue has become the color and tagline for the awareness campaign and all over the world we see landmarks and national buildings colored blue. As many awareness efforts are, it can be bittersweet to celebrate and draw so much attention to something that is- for some- a difficult journey.

I found myself thinking about this awareness idea. It’s one of those words we use a lot but when we actually consider the word it’s a little silly. Who are we asking to be aware of autism? I don’t know many parents who aren’t well aware that their child has autism. That probably goes as well for that child’s grandparents, teachers, dentist, neighbors and anyone else that spends much time with them. I don’t know very many adults on the spectrum who aren’t aware that they have autism.  And I suppose those who aren’t aware probably also don’t care. Those who work in the field are well aware. Those who are involved in research, or advocacy, or other allied fields are aware.

Who is it that we want to be aware?

My family recently made friends with another family in our neighborhood. One of their kids is different. Different in the kind of way that happens on a genetic level before a child is born. Different in the kind of way that doesn’t at all stop him from being a sweet, funny, social, and engaging little boy. He’s great and my kids love playing with him. But he’s different and it’s tempting to ask our new friends what’s up with him- because after all, I am aware that something is different.

Our new friends have not yet volunteered a diagnosis or explanation. And I love that. They have made no apologies or excuses. They have made no labels. Whatever their own thoughts and feelings are, they have only projected love and acceptance for their little boy.

I haven’t asked.  I am aware that he is different but that doesn’t change anything.  Instead of settling for being aware I have followed the parent’s example and practiced acceptance. I have accepted their child as the great little boy he is, I have treated him no differently and my kids play with their kids no differently. I am no saint- here I am as I type still wondering- huh, what’s up with their kid?  But there is a lesson in this for all of us.

Maybe autism awareness isn’t really what we need. We are all very well aware, autism is funny that way. What seems like a better call to action is autism acceptance. A month where we practice accepting that autism isn’t a death-sentence. A month where we accept that people on the spectrum have unique neurology that often makes them loyal friends, diligent employees, disruptive entrepreneurs, and every once in a while- some of the funniest people you will meet. A month where we accept that sometimes autism is really hard and there is probably a lot more you can do to support someone than being aware.

Like you know, offer to babysit. You’ll be REALLY aware then!

If we started practicing acceptance I wonder if maybe parents with a child on the spectrum might not feel as though they need to carry a card around that says “My Child has ASD”, essentially apologizing for their child. Maybe knowing that people accept their child just as they are- flapping and all, might go a long way.

Maybe doctors wouldn’t be so quick to label a child as autistic- or avoid the discussion by “referring to a specialist” if we were a little more willing to practice acceptance and not just awareness.

I wonder…if we weren’t so busy trying to be aware of autism and spent a lot more time radically accepting the children and adults who are on the spectrum…would autism even be autism?

Our friends shared in passing last weekend that someone at the grocery store came up to them and said “Oh, does your boy have Downs?”  The parents rolled their eyes as they told me the story “We said NO HE DOESN’T, thank you.” 

I secretly checked that off my list.     

Going Up instead of Giving Up

I recently read a blog post by Seth Godin http://sethgodin.typepad.com/ where he discussed the idea that we often openly share our goals about things we are going to give up (sweets, carbs, TV, alcohol, etc) but we are not as keen to share our goals about what he calls “going up”.  These are positive, moving forward, achievement based goals. Not what you are going to stop doing as much as what you are going to start doing.

This made me think about how much energy we in the autism world put into stopping behaviors, symptoms, and other experiences that we label as bad or negative. We identify things we would like our child to give up or change but are not as quick to identify and talk about things we hope our kids will achieve, or in Godin’s words “going up”.

Why are we much quicker to talk about the giving up and not the going up when it comes to autism?

We are told early and often that our child “might not be like the other kids”. Do we then begin putting our own limitations on our children? Are we afraid that if we dream big and set high goals for our kids they might not achieve those goals…and then what? We are hurt, embarrassed, disappointed?

In autism and in life what seems to often keep us from dreaming big is our own fear of failure and disappointment. A long line of “what if’s…”  

I would add another what if:  What if our own limited expectations are holding back our children from doing great things?

Every child is different and “going up” to great things is different for all of us. Let me encourage you that there is little lost in speaking up and sharing big hopes and dreams. Maybe there is even something gained in talking out loud a little more about going up and a little less about giving up.

After all, your child is listening, other families are listening, and somewhere inside you are listening to your own voice as well. 

What is this thing we call autism?

I sat in a restaurant recently and overheard a server tell the table he was waiting on that he had autism. Not sure how this came up or what the context was but the woman at the table verbally patted him on the head in a sing-songy voice and said “Well look at you here waiting tables, good for you!”  I cringed and rolled my eyes. As a former waiter myself I wondered how you could encourage anyone to be waiting tables.  But I didn’t say anything.

Thinking about this interaction I was reminded of the many times I’ve heard people make comments that ranged from silly to down-right mean, with plenty of just ignorant comments sandwiched in-between. As someone deep in the autism community I have watched for many years as people correct the language of others.

“I am not autistic, I am a person living with autism.”

“These are not autistic kids, they are kids with autism.”

“It’s not a disorder, it’s a difference.”

There are many variations of this and they are all well intended, even if not always well delivered. Our often misunderstood community is seeking respect and dignity and the battle over language some days feels like the only battle we can win.

I fully acknowledge the importance of person-first language and other verbal gymnastics we ask people to go through in order to show respect. Even more, I acknowledge the importance for marginalized groups of all shapes and sizes to be identified as they choose.  

What was more interesting to me as I sat in that restaurant listening to the woman fawn over her “waiter who has autism” was the amount of disagreement among those in the autism community about what exactly autism should be called. A quick google search will bring you several pages of points and counter-points written by those with autism about what language they are comfortable with and believe is appropriate.  In true autistic fashion, the discussions are not exactly flexible.

I will not suggest here that there is a right phrase or term we should be using because I don’t believe that is true.

What I would suggest is that the lack of cohesiveness in how those with autism want to be identified is not as simple as personal choice. I think the chat-room and comment section battles on the internet show the tip of an iceberg that few people are talking about.

Is autism even real?

Perhaps part of the reason it is so hard to settle on one agreed upon set of words for what we call autism is that autism is not really a thing. It is many things. There is a growing voice among researchers and doctors suggesting that what we call the “autism spectrum” is really several different genetic disorders (insert the word you like better than disorder here). As better research and science reveals these things to us we might discover that treating several different diseases as one is part of the problem.

Everyone wants to be high-functioning.

If you have not yet read the book Neuro Tribes by Silverman it’s worth your time. stevesilberman.com  Among other things it explores the history of the terms Autism and Asperger’s and how they came to be. In short- everyone wants to be high-functioning and nobody wants to be low.  I don’t write this lightly. There are very different realities for those at opposite ends of what we call the autism spectrum and it is understandable that this causes dissension and disagreement in how we label these things.

Is the rise in autism almost completely manufactured?

As advocates and members of this community we quickly become defensive when someone suggests that the autism math of the last several decades doesn’t add up. But just among us let’s acknowledge that it doesn’t. With the reported rates increasing every six months everyone will have autism soon.  Would that be all bad?  Different blog post.  For now let me submit that the difficulties we have in describing autism are in some ways related to our inherent understanding that everything we are calling autism is probably not so.

Is autism a reward or a curse?

I have sat through many hours of support groups and community events and there is often a parent who shares how they celebrate their child’s differences and believe autism has made their child special and they wouldn’t change a thing. There is also often a parent in that room who doesn’t say anything because if they dared try, their eyes would flood with tears and the words wouldn’t come. Because for them autism is the worst thing that ever happened to them.  How do we find language to unite these two very different experiences?

I think we struggle to define what autism is and how we should talk about it because autism is hard. Whether you celebrate it or shake your fist at it- and I do both- it can feel as if there are few victories when a child is born different than you thought they would be. But the victories are there. They are hiding in different places than you thought they would be and they tend to come when you aren’t looking for them. But they are there.  Maybe what is more important is that we are talking about autism and careful not to silence the conversation by reprimanding people for how we talk about it.

After all, as a former server I know there was probably a 50/50 chance that waiter with autism spit in the woman’s food. Just saying. The universe has a way of balancing the scales for us.

How to be a failure at parenting.

I remember one summer afternoon my granddad took me out fishing. I don’t remember if we caught anything and I couldn’t tell you what mountain lake we were at, but I remember like it was yesterday when my granddad backed his pickup truck into someone’s trailer. He climbed out of the truck and walked over to investigate the damage. Not too bad but the trailer’s tail light was smashed and laying in pieces in the dirt. We looked around. Whoever owned this trailer was floating out in the middle of the lake somewhere.

We climbed back into the pickup and I realized we were going to make a run for it. Nobody had seen a thing. We would peel out in a dust cloud high-fiving as we sped away.

Parents of all types have different philosophies and approaches to child rearing. There are those who wield a heavy rod so as not to spoil the child.  Others take Harry Truman’s approach “I have found the best way to give advice to your children is to find out what they want and then advise them to do it.”

Despite the wide range of artistic license parents take, there seems to be a common thread among most of them. That is fear. Worry. Anxiety. For most of us this starts very early, maybe even before our children are born. We worry about what kind of parent we will be and is there a right or wrong way to do any number of child rearing tasks?  And then they become teenagers, and clearly we are doing something wrong.  Look at them?! 

As I was preparing for my grandfather’s Bonnie and Clyde-esk escape, my fantasy was interrupted when my granddad climbed out of the pickup again, this time with pen in hand and scribbled his name and phone number on a piece of paper he slipped under the windshield wiper. I don’t remember if they ever called or if he ever paid to have that tail light replaced. I do know that an indelible lesson was burned into my psyche that day: There is a right thing to do, whether anyone’s watching or not.

In this case there was someone watching, it was a ten year old me.  A ten year old boy who watched his granddad drive poorly, be inattentive, and curse after he backed into someone’s trailer. It was none of that I remember though, it was how he handled the failure that I remember. In the end this may be one of the often missed gems of parenting advice. 

It’s not getting it right that counts as much as how you handle things when you get it wrong.

Our fear of parenting poorly drives most of us to try and get it right.  We listen to experts, garner the unsolicited wisdom of friends and family, and read all the parenting books we can get our hands on.  With Parents Magazine-approved child in hand, we set out upon trying to be the perfect parent.

Without fail of course, we are not.  And we worry about that too. But let us as parents take some relief in knowing that maybe the goal isn’t to teach our children to be perfect but rather that they learn how to fail. How to fail with character. With dignity. How to learn the right lessons when they fail.  How to fail the right way.

New study asks if polysystic ovaries play a role in autism

Mom’s ovaries could hold clues to some autism cases, new research suggests—and this time it’s not because of genetic vulnerabilities carried in her eggs. A new, large-scale study out of Sweden suggests that women with polycystic ovarian syndrome (PCOS)—an endocrine disorder that affects 5 to 10 percent of women of childbearing age—have an increased risk of giving birth to children with autism spectrum disorder (ASD).

The Karolinska Institute’s Renee Gardner, along with colleagues from Sweden and the U.S., tapped into a Swedish national population health database to look at potential ties between PCOS and ASD. As they reported online December 8 in Molecular Psychiatry, the team looked at 23,748 individuals with ASD and nearly 209,000 unaffected individuals, all born in Sweden between 1984 and 2007.

Although identifying information about the individuals was removed, the researchers had access to information about their relationships to others in the database as well as documented diagnoses and use of health care services. The group found that ASD was 59 percent more prevalent in children born to women with PCOS—a relationship that was independent of PCOS complications such as increased neonatal distress or C-section delivery.

This risk level is roughly comparable with that of having a father over age 50 (estimated to be 66 percent) but lower than it is in those with certain rare genetic syndromes or mutations. The authors of the analysis believe PCOS increases ASD risk in offspring to a greater extent than maternal infection, one of many factors previously implicated in autism.

The apparent PCOS link may seem odd at first glance. But it fits with a theory for autism development that centers on androgens—male sex hormones. Many researchers suspect conditions that boost androgen levels or otherwise upset hormone balance during pregnancy may alter fetal brain formation in ways that contribute to social deficits, delayed language development and other autism-associated symptoms later in life. The theory is supported by several lines of evidence including epidemiological, genetic and mouse model data as well as direct measurements of male hormones and hormonal precursors in amniotic fluid from children with autism and Asperger syndrome.

All women naturally produce some male sex hormones, typically at low levels. Along with ovarian cysts, women with PCOS are prone to increased androgen levels, which can contribute to symptoms such as acne, excess hair growth, weight gain and, in some cases, problems becoming pregnant. For women who do conceive, both PCOS and obesity have been implicated in a bump in androgen levels during pregnancy.

In that framework, results from the Swedish study suggest that “maternal testosterone, which can cross the placenta, is one source of the elevated prenatal steroids to which children who later develop autism are exposed,” Simon Baron-Cohen, director of the University of Cambridge Autism Research Center, noted via e-mail.