Tag Archives | parents

The yin and yang of parenting on the spectrum

By on February 28, 2013 in Autism, Parenting

We’re coming up on the one-month mark for a new ADHD medication for our seven-year-old son, who’s also on the autism spectrum. It’s always tricky to be objective about tracing results back to causes, but so far, the results are encouraging.

For the first time, he’s asking open-ended questions. Questions that indicate a curiosity about how things work, from a car engine to the mechanism behind a video exhibit at a museum. He’s been able to curtail some of his impulses – like doing the puzzle he just opened– when I announced it was bedtime.

The tattoo I got for my son and daughter works for my husband and me, too.

The tattoo I got for my son and daughter works for my husband and me, too.

It’s gratifying to see, not to mention a relief. After a bad experience with a different ADHD med last summer, the absence of negative

consequences is a positive in and of itself.

For me, though, it also provokes guilt. Because the only reason our son is on this medication is that his dad pushed for it.

Feeling burned by the first med, I resisted our doctor’s suggestions to try this one for almost six months. My husband didn’t oppose me, but gradually, after receiving input from school, he began his own low-key lobby. Finally, reluctantly, I agreed to try it.

And so far, it appears he was right and I was wrong. Thus the guilt. Did I deny our son six months of growth and progress because of my supermom proclivities? I’ll fix it/handle it/solve it myself. I don’t need any help from some drug.

This isn’t the first time my husband has been the ballast in parenting decisions. It goes way back to infancy, when we started part-time daycare. I felt like I should handle all the caregiving myself. That’s what a good mother does, after all. Even though I hated it and was going stir crazy at home all the time.  Mike took the reasonable approach. Let’s try it. It doesn’t have to be permanent.

Seven years, two kids and one sane mother on, it was by far the best decision for our family. Yet I still don’t know if I could have made that decision myself. So on this, my first post on Autism from a Father’s Point of View, I want to ask: What is it about dads? Is there something in the Y chromosome?  Is our dynamic reflected in your parental roles, too? And is it the balance that matters most, no matter who provides the yin and yang?

– Cari Noga is a writer in Michigan and mother to a son on the spectrum and a neurotypical daughter. You can read her blog here. In April she will publish Sparrow Migrations, a novel about a 12-year-old boy with autism who becomes obsessed with birds after witnessing the “Miracle on the Hudson.”

 

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Autism is

By on August 8, 2012 in Autism

I would like to talk to you about autism. I know, we talk about autism a lot, you and I. But somehow things have gotten off track and I really think that I need to make something very clear. Not for for you or my neighbor or for other people but for me, right here, right now.

I have been living with autism my entire life and didn’t even know it. It wasn’t until I discovered that my son has autism that I truly came to grips with what it really is. And I’m not talking about what I’ve read in medical research studies or transcripts or expert opinions or even public opinions. What I mean is, I know what autism is, to me.

autism isThis may sound a little strange but in a very general sense, autism is everything and it is nothing too.

Autism is the way a person perceives the world around them. It is the way they take it in, interact with it, experience it, process it and live with it. It’s the filter with which all reality flows through before becoming our own reality. It shapes a person’s past as well as their future. With each step forward, all that is involved in that step flows through a vail of autism which invariably alters the course they take towards their next step. Each step being a direct result of the step before it, exponentially affecting further steps ahead. We become a product of our combined experiences, each of which, affected and altered, whether for better or worse, as an effect of autism.

At the same time, autism is nothing, neither tangible or quantitative in it’s existence any more than any other thought, memory, expression, synaptic response or neurological interpretation to stimuli that every living thing is privileged with in it’s existence. It’s a unique perception unlike any other making it exactly the same as any other. It’s a tasteless, touchless, odorless, inaudible and invisible anomaly that isn’t really there.

There’s more, and this is important. So hear me out.

Autism is not a fight between parents. Autism is not a battle with the school board. It’s not about who is functioning higher or lower than someone else or even about what “functioning” even means nor is it about who should and shouldn’t be cured.

Autism is not about what a person looks like and it’s most certainly not about tendencies that a person might have, homicidal or otherwise. It’s not about taxing the system or making life hard on a parent and it’s definitely not about organ transplant bureaucracy.

Autism is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me.

I am tired. I’m tired of all of this.

I’m tired of reading stories in the news about mothers killing their autistic children. I’m tired of people making horrendous and false claims in the name of autism. I’m tired of the fighting, I’m tired of the name calling and I’m tired of the people who can’t admit when they’re wrong. I’m tired of people that are judgmental and I’m tired of the people who think it’s funny. I’m tired of people telling me what I should and shouldn’t believe, what I should and shouldn’t say and what I should and shouldn’t think.

I’m really, just tired. Very tired.

So here it is, as simple as can be.

Autism is me. It’s my son. It’s the little girl who can’t speak but screams with every breath she takes. It’s the little boy that completely loses control one moment but creates his own computer operating system the next.

Autism is the man that needs a heart transplant to live. Autism is the young woman that goes to Washington to fight for people she doesn’t even know but loves.

Autism is the life taken far too early by the parent that didn’t know what else to do. Autism is the life that wandered away from safety, scared and unknowing of the dangers around them.

Autism is not a disease. Autism is not a battlefield. Autism is not an opinion.

Figure it out. Work it out.

Because autism is a lot of people.

Autism is the perception, the experiences and the reality that effects and shapes what is to become a person’s life and yet, it’s nothing too, for all the same reasons.

It’s people.

It’s lives.

Autism is.

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My advice for parents that have just received their child’s autism diagnosis

By on July 23, 2012 in Autism

One of the more common questions I get from people that give seminars, write journalism columns or otherwise somehow speak to many people at once is, “what advice would I give to parents that have just had their child diagnosed with autism?”

Here it is, in 4 parts.

1. Be selfless

When the doctor says those 3 scary little words “Autism Spectrum Disorder”, your heart sinks. No matter how positive you are, no matter how optimistic and no matter what great things you’ve heard about autism… it’s a heavy weight to bear.

In that instant, all of our hopes and dreams for our child are lost. We see a little human being with all of our visions of the future beyond their grasp. We see a child that will never be all of the things we thought they could be.

The thing is, those are our hopes. They are our dreams. They are our visions of the future. They are what we think that child should grow up to be. Us… us… US.

Letting go of that is hard. Some parents are never able to let that go.

But you have to realize, that’s your selfish side speaking. And I’m not saying that it’s not ok. It’s perfectly understandable and acceptable to be selfish where it pertains to your child. We all want what’s best for our children. We all want our children to reach for the stars and beyond.

But, you see, they will reach for the stars. It’ll just be in a different way.

They might not grow up to be like mom or dad and they might not even grow up to do all the other cool things you’ve imagined they could do but what they do decide to do, will be amazing.

They might not be your dreams or what you envisioned but, if you learn to let go of that and support your child in their dreams, you’ll find that nothing was ever truly lost.

You may be saying, “that’s all well and good for children that progress well and go to school and can manage on their own but my child will never have that”, it is not my intention to dismiss your burden. And all of the things I’m saying here will still apply. It will just be even harder still. And to you, I’d like to address this further in the next part…

2. Take stock in what you have

Sometimes I meet parents that are just so dark. They feel like they’ve lost everything and that their child was lost to them. They really believe that autism has stolen their child and ruined their future. And it hurts. It hurts me because no one should ever have to feel that way. And there’s nothing I can say or do that will help them.

But maybe, if a parent who is on the path towards feeling that way can be reached out too, perhaps those feelings can be prevented or avoided.

I’d like to tell you about my visits to Sick Kids Hospital with my son. One time for surgery and one time for allergy testing.

Walking through a place like that, you see children without hair and looking very pale and weak. You see children missing limbs or even an eye. You see children that are unable to see, hear and even those that are unable to move.

The hardest, I think, is seeing parents that are holding each other, crying so hard that in one moment are crying out louder than you’ve ever heard and in the next moment, crying so hard that they can’t even make a sound.

They moved into the hospital to be with their child in those final months, sometimes years. They know real loss. They’ve lost their house and jobs. They’ve lost the lives they once knew because for the time they’ve been in there, life has moved on without them.

But their child was worth it. For as short as their life was, it was a life. A beautiful and wonderful life and that life deserved to be loved. That child struggled for every day that they could.

For those parents, it was hard. Very hard. Harder than I could ever imagine it being and will probably, hopefully, never truly know.

But being there was worth it.

The reason I’m saying this is that, whether your child has autism or not, your child is right there, in front of you and your child needs you to be there with them.

Don’t be off fighting your battles or mourning your losses. Instead, move in to their room and be there with them.

Yes, you could take away from this story that things could always be worse or that they could always be better but that’s not what I’m trying to tell you. Instead, do as those parents did, do as they wish they could continue doing right now.

Take stock in what you have and live it. Your child has autism. It’s not a death sentence, it’s not an ending. Their life will be different than what you expected and it might even get really hard, but your child is right there wanting you to be a part of it.

3. Support is where you give it

It might not seem like it at first, when you know so little about autism or the struggles that it will bring, but your experiences are already and will prove to be quite valuable.

Every day, people are sharing their stories online and in support groups and one day, if you’re willing, that could be you.

Right now, someone is wanting to hear about the process you had to go through to get the diagnosis complete. Someone is wanting to hear about how you are feeling right now. Right now, someone is wanting to hear that they’re simply not alone.

If you are willing to reach out, even just a little bit, people just like you will be wanting to reach back. But if you close yourself off and bury yourself in that feeling of being so very alone, which we all feel (it’s not just you), you’ll miss all of those shared stories and all of those shared experiences. That one smiling face or reassuring word that you needed at just the right time will be missed unless you are willing to first step out and offer a warm smile too.

Autism is so very different from person to person, family to family, life to life but at the same time, we all share something so common and so fundamental that we already have this bond that we only need build stronger… and that’s our children. Our children need us.

What more reason do we need to support each other?

Unconditional love4. Love unconditionally

Whether your child has autism or not, can remember Pi to a thousand places or bangs their head against the wall, will go on to big and successful things or live out their days in a care facility…. no matter what, you must love your child unconditionally.

Many people say it as just a figure of speech or, while understanding it’s meaning, don’t really take into account the real scale of it.

Loving unconditionally does not mean that you love your child despite autism. Loving unconditionally means that you love your child with autism.

That no matter what your child does have, doesn’t have, does do, doesn’t do, will become, won’t become, who they were, who they were not, none of it matters, not one piece of any of it will ever take away from who your child is or the love you have for them.

You don’t get to love your child except for the part of them you don’t like. That’s not how “unconditionally” works.

When you fall in love with your true love, your soul mate, your bride or groom to be for the rest of your life, you accept them at their best and their worst, they’re best features and even their faults. You love them for who they are and wouldn’t change a thing.

The same thing applies, even more so, for your child.

Love your child for who they are, not for who they are even though you wish they could have been someone else, or someone more. Love your child for what they can do, right now, not for what they can do even though you wish they could do more.

Love your child. Period. Just love your child. Your child is perfect because your child is your child.

One day, maybe not today and maybe not tomorrow but one day, you’ll look back and realize just how much of a difference that really makes. It may seem like such a trivial thing at the time but it’s not.

One day, your child will look back and will know that they were never meant to feel like less than they should be. They will never feel like a disappointment in your eyes. Not even a part of them. They will never feel like they were the cause for your lost hopes and dreams.

What you do today, by truly loving unconditionally, will be your autistic child’s source of strength in years to come.

Do you see how important that is? Do you see how powerful that is?

What I’m saying is, without true, real unconditional love, one day, your child will believe less in themselves than they should, than they really need to, because they’ll look back on all the times you were disappointed in how they were less than they should be, less than you wanted them to be. And they’ll doubt themselves. They’ll feel what you felt.

And it won’t be the autism that holds them back, it will be because of the flaws and faults you saw in them that whole time. They’ll believe it because you believed it and it will stop them from achieving their true potential.

I know, if your child was just diagnosed, that’s a lot to take in and it’s even harder to do. Chances are it will take time and even though it seems like a roller coaster of a ride, you do have time.

Just keep it in mind. Loving your child, unconditionally, truly unconditionally, could be what makes the biggest difference in their life. Not the autism or any other struggles that autism can bring.

Your love. It’s just that powerful.

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Autism and empathy – Here’s another way to look at it

By on July 20, 2012 in Autism, General

EmpathyEmpathy:
The ability to understand and share the feelings of another.

There really is a severe lack of empathy where autism is concerned. Allow me to demonstrate.

  • You’re at a grocery store and your child has a complete meltdown and someone says “Can’t you control your child?”
  • You go to a restaurant and your child has trouble sitting still and someone says “Those people really need to discipline their child.”
  • You look really tired and worn out and someone says “Parenting can be tiring. You’ll get it eventually.”
  • You’re explaining the struggles that having an autistic child can bring and someone says “Oh please. All kids do that!”

Do I need to go on? Are you starting to see where the lack of empathy comes into play?

And this is just for the parents. Here’s a new list, from the autistic’s point of view:

  • Just go and play with the other kids. You’ll have fun if you just make yourself do it.
  • It’s not that loud. Just deal with it.
  • You’re doing it my way whether you like it or not.
  • Look me in the eyes when I’m talking to you. Stop being so rude.
  • You have to give me a hug or you don’t get what the others got.

Again, the list could go on and on. But I think you’re starting to get the picture.

I won’t even go into the whole bullying thing. I think it’s safe to say we can all figure out where the lack of empathy comes in when someone is bullied, autistic or not.

Yes, there’s a very distinct lack of empathy but it’s not necessarily coming from the autistics themselves.

Sure, some autistics might not understand the thoughts or feelings of others. But then again, some autistics might just not care. Maybe it’s because they don’t understand but maybe it’s because it just doesn’t matter all that much to what they’re doing at the time. Then again, maybe some autistics care very deeply and are just unable or incapable of expressing it.

That’s a very basic and rudimentary way to look at it. For more details and examples, check out Autism and Empathy.

The bigger problem, as I see it, is the lack of empathy towards autistics, not from autistics.

Instead of wondering if someone is caring about you or your feelings, consider how you can care for theirs.

That’s the great thing about feelings. You don’t need to get them to give them.

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Autism – The Struggles

By on July 18, 2012 in Autism

One thing that most, if not all, people can agree about autism is that it does present it’s share of struggles.

But what are those struggles? And for whom?

Parents

Normally a diagnosis comes at a very early age leaving parents to do what they feel is best as they attempt to make life altering decisions on their child’s behalf.

This means finding therapists, finding the right school, maybe battling that school, trying, finding and setting diets that will not only help but that their child will actually eat, and the list goes on.

It also often means some added traveling, lots of extra costs and even extra stress… especially if someone is preventing us from getting the services that our child needs.

If the child is unable to sleep at night, then the parent isn’t able to either. If the child is unable to attend loud restaurants or other venues, the parent isn’t able to either. If the child is emotionally overwhelmed, whether anxiety or depression or what ever, then the parent likely will be too.

Indeed, parents are often all to familiar with the struggles of having an autistic child.

It’s never more evident than when another parent tries to correct you, give you advice or worse, judge you for your decisions.

Autistics

The people that actually have the disorder have even greater struggles, many of which they likely find themselves unable to explain.

First there is the sensory processing issues. Whether too extreme or too subtle, an autistic child can often be found spinning around, hitting things, touching everything, watching things intently, screaming or moaning for no apparent reason or having a full blown meltdown. Sometimes it’s the lights, sometimes it’s the smells, sometimes it’s the feel of their clothes, sometimes it’s loud noises or consistent noises that seem like they’ll never stop and then there are times that no one will ever know what caused it. Possibly not even the child. There’s just something wrong and it’s too much for their system to handle.

Later there is communication issues, usually due to verbal skills often being delayed. Children want things but are unable to express those desires to their parents or others. Or, as I said earlier, have sensory overload but are unable to tell anyone about it.

Autistics often have issues with foods, whether it’s sensory (taste, smell or texture) or dietary complications such as sensitivities to gluten or casein. They also tend to have problems sleeping through the night, either prone to night terrors or just waking often due to an over active mind or some outside stimulus.

Autistics then have struggles with making friends, being understood as well as understanding others, being in social situations and all those other things that comes with being in school or having a job. Often a target for bullies, autistics tend to be victimized or even taken advantage of as they don’t really understand the motivations of others.

Then there’s dealing with people’s misconceptions (imagine everyone thinking you must be like Rainman), people assuming you must have a really low IQ or better yet, a really high IQ, people never being able to get over the mindset that “there’s something wrong with you” and even the much more simple, yet still struggle worthy, awkward moments where people just don’t know how to behave around you.

Where the struggle is not

Let me say this first, to make it perfectly clear, there really are some people, children and adults, that really are a handful. Sometimes people really are just extremely difficult to deal with as part of who they are and that’s how they want it… those people can be a struggle, whether they have a disorder or not.

Autistics are not the struggle.

You can classify autism itself as a struggle, if you want, but really, the real struggles are the situations and events that may or may not be due to the autism.

Look at it this way, when a child is born deaf, parents don’t see that child as a struggle. The communication barrier is a struggle. Learning sign language is a struggle. Finding the right services is a struggle. Having to afford special devices around the house can cause a struggle. But the struggle itself is not the child.

Likewise, with autism, the person is not the struggle, unless they go out of their way to be rude, unkind, unhelpful or what have you. But as a general rule, being autistic is not a valid reason to think of the person as the struggle itself, or the cause of your struggles.

If you are autistic: Don’t get down on yourself. You are not your struggles and your struggles are not you. The struggles you may face, maybe due to autism, maybe not, are situations in your life. Those situations are struggles. But each situation is a separate entity that can be avoided or overcome.

If you are a parent: Never treat your child as if they are your burden. Never tell anyone, not them, not others and not even yourself, that your child is the source of your struggles. They’re not.  Your child has struggles. You have struggles. Your child is not one of them.

heavy burdenNo, it’s not a matter of semantics or proper wording. It’s the way you look at a person. It’s the way you treat a person. It’s the way you believe a person to be.

When you think of someone as a struggle or a burden, you’re essentially reducing that person down to some kind of heavy load that will weigh you down as you carry them with you. And that’s not really how you see them. At least, I hope not. Because they’re not.

Make the conscious choice now. How will you see your child (if you are a parent) or how will you see yourself (if you are an autistic)?

A heavy load, weighing you down or a beautiful soul and a wonderful person that can lift the spirits of others?

Because that’s the choice you have to make. It doesn’t matter what struggles you have, it’s all in how you view yourself and others.

Once you make that choice, you’ll see just how separate we all truly are from our struggles after all.

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