Tag Archives | parenting

Balancing the attention between one child with Autism and another child without Autism

By on October 5, 2011 in Autism

One of the most powerful scenes in the NBC hit tv show Parenthood, for me, was when the father sat down to talk to his daughter about how he missed her soccer game due to her younger brother’s Aspergers diagnosis. He needed to be somewhere with his son and couldn’t make it to her big soccer match.

He apologized for how disruptive it had all been for her the last couple of weeks, at which point she says “Weeks? Dad… try years.”

It came as quite a shock to him as she sat there and listed off a bunch of events in their life that was affected by Max (her younger brother with Aspergers)… “ever since I can remember, it’s been all about Max.”

It’s at this point, I wished television had a “look inside his head and see what he is thinking” component but it doesn’t.. in a way, it’s a good thing because that leaves you and I to really take it in with him and realize…. wow.

Advice on how to maintain balance

Cameron and Tyler

Brothers

I’ve had a lot of people ask me lately how I maintain balance between my two boys, Cameron (6yrs old with Autism) and Tyler (3yrs old without Autism)… the truth is, I just keep them both and the need to keep them balanced in my mind.

That may be hugely over simplifying it but at the core, that’s it. I am just always conscious of it and even concerned about it. I don’t want either of them to ever feel left out. So every time I’m with one of them, I wonder what the other is doing or thinking.

Cameron is in a special class, it’s a very very different class from Tyler’s class. He gets better technology to use, there’s less children, more adults and even though the routines are more strict, the structure is less so. Being a class of autistic children, there’s no real curriculum, not in the sense that some other classes have anyway.

We’ve missed out on carnivals and amusement parks because the noise and crowds would simply be too much for Cameron. That means that Tyler has missed out as well. We have avoided some restaurants because Cameron might be overwhelmed at them… that means that Tyler has missed out as well.

Right now, Tyler is 3 and so, that old cliche about not missing what you don’t know about applies. But soon he will…. and he may resent having missed out on some things in his life due to his older brother.

So, every time we don’t do something or change something to accommodate Cameron, we have to keep Tyler in mind… going to a different restaurant, or someplace else that is fun.

It likely never really balances exactly but it’s something. So long as you’re conscious of it, it’s something. An effort will be made.

It goes both ways

When Cameron was little, like, really little, he needed some snuggle time with me every single morning when he first woke up. As he got a little older, he rejected that idea. He not only didn’t need it but didn’t want it. Now he enjoys a hug from time to time, we have our routine hugs and kisses before bed but any semblance of affection in the traditional sense beyond that is nowhere to be seen. Which is ok by me. I know he loves me with or without it.

Tyler on the other hand loves to snuggle while he watches tv, gives me hugs quite often and is not shy about showing his affection at all.

Sometimes this has me wondering though, as I sit with Tyler on my lap watching tv while Cameron is in a chair across the room… does Cameron feel left out?

I have asked him multiple times and will continue to do so from time to time, if he’d like to sit on the couch with me, he always says no… and I respect that. Still though, a part of me wonders if there’s a small part of him that actually would like to but prevents him from doing so. I’m not sure I could describe it adequately enough but you get the idea… a part of him longs for that show of affection but a bigger part of him prevents him going through with it.

It’s also entirely possible that he doesn’t feel left out at all and really couldn’t care less that I snuggle with Tyler and not with him. Unfortunately, there’s a good chance that I’ll never really know for sure… or if I do, it’ll be later in life… when it’s too late.

The future

The problem with all of this is the resentment… what we all fear of our children, regardless of special needs. The last thing we want is for our children to resent each other for something that was our, the parent’s, fault. Something that we could have done better, avoided, recognized… done something about.

Hindsight… it hurts because by the time you get it, it’s too late.

Unfortunately, I don’t know your family dynamic, I don’t know you and I don’t know you’re children… so I won’t be writing any blog posts on tactics to use or methods to apply to your daily life. The only thing I have to offer is…. keep it in mind.

So long as you keep yourself aware of it, you’ll do something about it. Your mind kind of makes you do it.

There are quite a few articles out there, by doctors, with good suggestions… like having nights dedicated to each child, having “desires” lists for each child where they each get to have their desires fulfilled… putting them on equal footing…  some of those articles will have some insights that may help you.

But ultimately, only you can know what will and won’t keep things fair and balanced. In fact, chances are you won’t know, not at first. But you’ll figure it out… so long as you always keep it in mind.

Me?

I give Cameron an extra “I love you” from across the room while I have Tyler sitting on me. I just like for Cameron to know that Tyler may be on my lap, but I’m thinking about him too.

See? It’s not complicated. It’s not worth putting into a “how to” article to share with the world. It’s something I do… you’ll find something you can do.

Just remember, it’s not just the negatives (missing out on things, avoiding fun stuff, etc) that cause resentment… it’s the good things too (showing affection, spending more time with, etc).

Keep each child in your mind equally because they are equals. They deserve to be treated that way.

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Handheld devices and the benefits to children with autism

By on September 14, 2011 in Autism

I mentioned on Twitter the other day that my son wants a Nintendo 3DS for Christmas and a few parents got into a discussion about how great the handheld devices were for children with Autism. Also, when I wrote about taking children with Autism out to restaurants, a lot of parents were quick to point out that they often brought along devices as well to help.

So what is it about handheld devices that are so great for children with Autism? What are the downsides?

It’s all about control

handheld devicesHaving something right in your hand gives you complete control over it. That means that if you pause a movie, take a wrong turn in a game, flip pages in a book too fast… no one will be upset, no one will say anything… it’s only for you and you are in control of it.

You don’t have to wait for anyone to do anything, you don’t have to ask for permission before making choices… it’s all yours.

Doing what you love

My son loves to read books and play video games, which means that I can put a book in his hand or a handheld video game system and he’ll keep himself amused for hours. It’s what he loves and it’s right there in his hand.

When we parents think about bringing something to the restaurant to amuse our children, we don’t grab things they hate.. we get what they love.

Sometimes that takes trial and error but most likely you’ll find something pretty quick, especially since they get to control it.

Blocking out the world

The best thing about having something in your hand, engaging your senses is that it allows you to block out other input around you, such as sights and sounds.

If you have Autism, this could be huge. No more restaurant noises bothering you… however, if you’re a parent trying to get your autistic child’s attention while they’re playing a handheld game.. you may find yourself getting frustrated pretty quick.

Putting the three together… you have something you love, complete control over it and you can immerse yourself into that handheld world, blocking out the rest.

These are very important to children in general, more so to those that have Autism. People with Autism focus intently on the things they love, to the point where they need to block out the rest of the world.

Educational

Everything your child absorbs when they can control it, love it and focus solely on it is learned on a scale far greater than any other method.

And it doesn’t have to be an educational program or math book to do it either. There are life lessons in movies, there are problem solving and motor skill building qualities to video games. Your child will gain a lot of valuable knowledge and skill simply by being so engaged by that device in their hands.

There are no distractions, they love it and get to enjoy it even more when they have full control over it. What they learn… they learn. It doesn’t just go in one ear and out the other.

If you do get them reading a book, or doing an educational program on the ipad or something along those lines… all the better!

The one big downside

There is one major problem that most everyone will run into, Autism or not… but a child with Autism will find it even more difficult… that is when it comes time to turn it off.

The more a person loves something, is in control of it and is completely immersed in it as if it’s your whole world… the harder it is to have it ripped away.

I don’t know anyone that had an easy time getting a game, or book, or movie, or ipad, etc away from their child when they’re fully immersed in it. It’s going to be a battle…. at first.

But you can look at it more as a way to practice for the real world because let’s face it… if they don’t learn how to let go now… there will come a time when they’ll have to do it at school, work or just generally in public and if they haven’t had that practice, it could be a huge problem.

It used to be the #1 cause of meltdowns for my son.. he’d do great all day, get a game for a reward and then blow up when it came time to turn it off. But as I said, it “used to be”. He’s so much better now because he’s learned, over time, that it’s ok to put it down. It’s ok to put it off for another time because soon enough, if he behaves, there will be another time.

We just had to endure the meltdowns for a while to get to this point.

Handheld devices such as books?

You may have noticed I referenced books in with the other electronics in my examples… for Cameron, he loves books. A lot of the time, we can get a book from the library or from a friend and he’s more than happy to sit down with that for an hour.

He can’t read much of it (only really small words) but that doesn’t stop him from enjoying it.

You don’t have to force feed your child movies or video games… anything they love will do. Sensory objects, art work, books, money… yeah, my son also loves to sort out coins and such.

That being said, there’s nothing wrong with movies, games or ipads… they’re all helping your child to learn too. You may wish to limit those things a bit more but still, there’s no harm in giving your child a good game or movie.

The escape, the interactions…. all of it is not only good, it’s important. Your child may have a meltdown when it’s time to turn it off but it’s still valuable coping skills they’re learning.

Don’t feel like you’re doing anything wrong by letting your child stare at something in their hands for an hour or two… it’s good for them. It’s a valuable growing tool.

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Acceptance is the greatest gift you can give a child with autism

By on September 6, 2011 in Autism

It’s a scary thought, it truly is, but there are parents out there, far too many really, that simply can not accept that their child has Autism.

Either they’re in denial and refuse to believe the doctors, or they refuse to believe that their isn’t a cure to make their child how they want their child to be… or they just refuse to accept that their child is different… I feel so very bad for those children.

If you can’t accept me, who will?

A child’s only wish is to make their parents proud. To receive praise for those first steps, to get a treat for remembering to tidy up, for getting a shiny new bike for doing well in school… but when your parents see you as broken, defective…. less than you should be… what message does that send to a child?

Children grow up to be self confident because their parents instill that strong self worth in them. Children learn to be happy with themselves because their parents believe, through and through, that their child is wonderful exactly how they are.

Whether a parent tries to fake it or not is irrelevant because a child that can not be accepted by their parents will always feel they’re not wonderful, they’re not worthy of acceptance… that no one will ever like them for who they are.

Acceptance is not giving up

The biggest misconception is that accepting your child for who they are is the same thing as giving up and doing nothing to help them. That’s the furthest thing from the truth.

Only when you accept your child’s disorder can you begin to move forward in truly helping your child overcome, excel and maybe even turn that disorder into an advantage.

Many people who refuse to accept that their child has Autism will also refuse to start therapy, treatments and such… losing valuable time, if they ever do come around to accepting it all.

Also, acceptance in finally believing that your child is who they are, how they are and that they are simply always going to be different can help you to adjust your strategies and methods in that you recognize the need to incorporate your child’s wishes, behaviors, activities and “quirks” into the therapies/treatments that you’re trying to use.

Until you stop forcing change on your child and rather, accept the differences and work with your child’s differences, you will keep hitting road block after road block.

Therapy isn’t meant to make it so that your child is no longer autistic, it’s to help your child succeed with Autism, not despite it.

Acceptance leads to self respect, self confidence, self reliance

self acceptanceA child without his or her parent’s acceptance will grow up with self doubt, no self value and will always feel like they don’t belong… like they’re broken.

With acceptance though, a child can grow up to feel that they are respected and have real value to themselves and others. With confidence, children will feel more bold, more brave and more willing to take the steps necessary to becoming independent.

If you look at your child like they’re broken… they may never learn to brush their teeth. But if you love them for who they are (yes, including the fact that they have Autism) and begin to work with your child, with the Autism, you will find a way to have them brushing their teeth and you’ll find that way together, because you’ll work together to do it.

Acceptance is such a powerful thing… it’s far more than just believing the diagnosis… it’s empowering, it’s life skill building, it’s a source of pride, it’s a confidence booster, it’s enlightening….

Acceptance is not giving up. Acceptance is not saying something you don’t really believe.

Acceptance is a place. It’s a moment in time. It’s a destination that will set you on an entirely new path, a beautiful path. It’s the end of negativity and the beginning of limitless possibilities.

Acceptance is the door that you need to open… step through and close behind you.

Move forward with your child, not against your child.

Your child can be perfect. All you have to do is believe it. Because they are.

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What is Autism Advocacy to you?

By on August 31, 2011 in Autism

You would think that a question, such as “what is autism advocacy to you?”, would be pretty straight forward. However, if you ask a few thousand people that question, you’ll very quickly realize that it’s most definitely not straight forward.

Advocate

verb
1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

noun
2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.
3. a person who pleads for or in behalf of another; intercessor.
4. a person who pleads the cause of another in a court of law.

I think everyone can agree that, even though there is an official definition, there is no one way to be an advocate.

Autism Advocacy

So I asked what Autism Advocacy is to people on various social networks and thought I’d share some of the responses with you:

#empowerment #support to let families affected by #Autism , #ASD , & #FragileX know ‘they are not alone’

Active support that raises awareness, results in change & aid 2 individuals & families.

For me it means donating money to autism research, doing walks for autism, striking up a conversation about it with strangers in the checkout line, at the park or wherever. Online, it means posting articles, videos, blogs etc talking about different aspects of the disorder. I think it is a combination of these things, as well as being a “voice” for those people affected by it.

Raising awareness of the breadth and scale of autism and reminding people it is a life long condition. I certainly have got into the habit of posting articles / starting conversations about issues on autism.

Autism Advocacy on a parental level is educating the awareness of the challenges you face everyday with your child who is diagnosed. Especially with your community leaders, your local government, and advocating for change to enhance and strengthen the bonds of Autism Families. Most families are not able to financially support the intervention that is provided through health insurance, Fundraising is important aspect of providing those needs to your family. Structure is vital for children with Autism.

I even got some responses such as this one:

Unfortunately, mostly very loud parents.

Which may bring you to feel upset at first but I think when you really think about it and think back to some of the other parents you may have come across in your life, this actually may be true… maybe not “mostly” but certainly some do qualify.

You can quickly see just how varied the answers are. They’re all advocates but they look at the tasks, the targets and those they’re advocating for quite differently.

Who are some good Autism Advocates?

I also asked who people felt are good autism advocates. Many people named Temple Grandin, some people mentioned people on Twitter, such as @Diaryofamom, @shannonrosa, @CorinaBecker, @AutismWomen and @LauraBShumaker.

The response from some parents where that they, themselves, were the best Autism Advocates. Why?

Well, as the parent of a child with Autism, no one could advocate for their child better than they could.

But this brings us back to the first question, what is Autism Advocacy?

In a rather amazing bit of good timing, Jim (@GingerHeadDad) wrote this just yesterday: http://gingerheaddad.wordpress.com/2011/08/30/what-is-wrong-with-just-being-a-parent/

I had written several replies in his comments but never hit submit on any of them. I felt I wasn’t expressing myself clearly, I felt I wasn’t doing his post justice. I felt… I felt that the questions that I had been asking essentially are the response to his post that I am looking for. So I decided to write up a blog post of my own in response and share that in his comments….  which brings me to this:

Autism Advocacy – As Defined By Stuart Duncan

Autism Advocacy is the speaking up about, speaking on behalf of, speaking in support of, speaking in defiance of and speaking in defense of yourself, a loved one, all people with Autism or for Autism in general whether you are speaking to yourself, one other individual, a group of individuals or the entire world.

What does that mean?

It means that it doesn’t matter how much money you’ve donated, if you’ve created laws, written books, built buildings or if you’ve informed a family member, had a teacher recognize a special situation involving your child, had an impromptu discussion with a stranger or even if you’ve simply come to self realizations all on your own…. you are an Autism Advocate.

Never feel like you aren’t doing enough simply because your advocacy efforts are focused on those you love.

That change you made in a teacher, that stranger you talked to, that family member that has a better understanding… they’ll carry that forward to the next time they encounter someone with Autism and it will affect them. You will have made a difference.

Always accept that you feel you could do more but never let yourself feel like you haven’t done enough.

We all see advocacy differently. We all see Autism differently. We all have a different view that leads us to different goals.

It’s not about the number of people that hear you. It’s not about the size of the changes you can inspire in the world.

Big or small, loud or quiet, we are all advocates.

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To the world you may be just one person, but to one person you may be the world. ~ Brandi Snyder

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Starting the School Year When Your Child Has Autism

By on August 29, 2011 in Autism

This post is assuming that your child has Aspergers or HFA level symptoms and thus, capable and “ready” for school.

The whole school process is a struggle enough. Parents have so much to get ready…. supplies, paperwork, transportation and more. Then you have the child who’s going to be heading out into the world, for the first time on their own, to fend for themselves.

It’s nerve wracking. It’s scary. It’s tiring.

On top of all of that, your child has Autism? This is a recipe for disaster if not prepared for in advance.

I don’t have all the answers, I’m just a guy trying to get my own kids through it but I can share with you some of the things that we’ve done. Maybe some of it will be new to you, maybe you’ll have much better ideas than I do (and please do share them in the comments!)

schoolFirst Year

If this is your child’s first year of school, you’re going to have to do a lot of preparation in advance. This doesn’t start a few months before or even a year before… this should start as early as possible.

  • seated learning time (counting, alphabet, shapes)
  • scheduled snacks/lunches as per strict routine
  • scheduled play time
  • play with others. Whether that means playing “next to” another child or what have you.
  • play groups would be ideal. Learning how to cope in a room with other children

Obviously this isn’t going to be fundamental or even strict for the first little while but as you approach that all important first day of school, it should become more and more a part of the regular routine.

A good idea to get your child ready is to visit the school and the teacher in advance and find out what some of the routines will be.
Also, listen for keywords because they may refer to certain things differently than you would at home.
For example, my son’s school has “nutrition breaks” rather than “lunch”

As part of your build up routine, have your child get up at the same time every day, get dressed, teeth brushed, breakfast in and everything before 8am or 8:30am.

I know that most of those things are a challenge on a good day but the more it becomes a part of the routine, the better it will go over time. It’s far better to struggle BEFORE school than when school actually does start.

Back to School

So your child has been to school already and is just finishing their summer vacation. That’s fine, a lot of the same rules will apply except that your child is likely a bit older which may mean having to rebuild some routines.

For example, your child’s bed time may have been pushed a little later since the sun doesn’t go down as early. Your child may even be waking up later as a result.

Going out to the park, swimming, sitting around and playing video games…. all of these things disrupt the routine and even though they know full well what to expect at school, they may still find it a huge challenge to cope.

About 2 weeks before going back to school, start to ease their bedtime back to it’s regular time. Not at all once but a bit by bit.

The week before school, go back to your school routine. Waking up at a certain time, going to bed at bed time… and everything else becomes school mode.

Get them dressed, fed, cleaned and even pack their lunches in the morning.

To make it fun, use that packed lunch as an excuse for some last chance trips to the park or the lake or what have you. Let them do their lunches as they would at school… meaning, no help (or not much) from you.

This helps them to get back into school mode.

The Best Thing You Can Do Is Not Be A Parent

I know, you just want to enjoy every last minute and make them as happy as possible for every last minute of freedom they have.

But that does very little to prepare them for what is to come.

And there’s no saying that the preparation can’t be fun. You just have to be creative. As I said earlier, go on picnics… give them rewards for a job well done.

Preparation is key, I’ve found. My wife is a master at it and really, this post is just notes as I tag along with her awesome planning.

The only way you can discover, recognize and avoid as many potential pitfalls and issues as possible in advance is to start before the fact. Treat the week before (or even 2 weeks before) as if they were school days so that you can hash out any problems or find out what will become problems before you have to deal with it for real.

That way, failed mornings don’t jeopardize an actual school day. It’s far better that you try to recover at home, where your child is comfortable, than at school where they really don’t want to be.

I’m sure your child’s teacher would appreciate it!

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