5 things to tell every parent right after their child is diagnosed

By on December 8, 2010 in Autism

Learn, Learn, Learn, Learn, Learn!!

What? Oh, you expected an intro and information and conclusion and so forth… right.

Recently AutismSpeaks asked on Facebook and Twitter what 5 things that people would tell parents right after their child was diagnosed. Even though there was hundreds of really great answers, I found that you could boil them all down into one fundamental response… “learn”. Every answer involved the parents having to learn one thing or another!

So having boiled it down to one answer, which encompasses them all but is still a little too vague entirely on it’s own, I will broaden it out to answer the original question: what 5 things would you tell a parent right after their child is diagnosed with Autism?

1. Learn what Autism is.

LearnThe scariest part of getting the diagnosis is that most of us really don’t know what Autism actually is at the time and so our minds start racing about all the things that must be wrong with our children and all the ways their future is going to be impacted. We start going through our memory files trying to think of every single thing we’ve ever learned or heard about relating to Autism.

The only way to really conquer a fear of the unknown is to learn about it. Don’t bother yourself with causes and cures, just learn what it is. Talk to your doctors and also hit the information super highway to learn how Autism affects people. As you learn the signs, symptoms and effects it has, you’ll begin to recognize them in your child. It’s the first step to learning how those symptoms are treated.

2. Learn What Services Are Available To You

This has to be your second step because early intervention is the key to helping your child overcome Autism and live a productive life. Unfortunately, not all treatments/therapies are covered for you, not all are free, not all of them work, not all of them available to all people and many, especially the good ones, have a rather long wait list.

The sooner you find the best places to go for help, the sooner you can get in the door to talk to them. It may be months or even years down the road so you have to find these places ASAP.

Also, some places will take you but not until after you’re approved for funding, or some other stipulation and again, applying right away means you get the paperwork done faster.

3. Learn the treatments, therapies, diets, etc. yourself

If you’ve done #1 and #2, you’ll find yourself quickly thrown into terminology hell with abbreviations thrown at you from every direction, including ABA, IBI, GFCF, IEP and on and on. You’ll learn them as you go, don’t stress out over it.

It’s very important to remember to take notes all along the way!

Some of these things will work brilliantly for your child and some will not. The very nature of Autism is that no one solution works for everyone.  So you may need to keep track of the results of each attempt so that you can tell what is and what isn’t working.

More so than that, many therapies are effective but so very limited. That is to say, you may have speech therapy appointments once a week which help a lot, but how much more would it help if it was daily instead of weekly??

Ask for notes and information on how you can continue the work at home. Ask for books or copies of what they work on that week so that you can reinforce the work.

If it’s a nutritionist, ask for a list of essential foods to try for, ask for suggestions on how to get a picky eater to eat the things they have to instead of just what they want to.

Never just expect a professional to do all of the work for you. They are professionals but they can only do so much because it’s not just your child that needs them. However you are not them. You can devote your time to one child far better than they can. But you’ll need the information and tools to do it.

Also, maybe one day you’ll meet another parent along the way that is really struggling and can’t get the same help you did, and you’ll have all that information for them to be able to use if they have to!

4. Learn where the support is.

The one good thing about Autism being everywhere is that there are so many people out there going through similar situations. Someone you are going to deal with will likely have some information on how to get involved with a support group, whether it’s your doctors, therapists, teachers, nutritionists… what ever, keep asking them all if they know of any.

Do not be shy.

Children with Autism are extremely diverse and you’re very likely to find parents that have children that are extremely low functioning, some that are high functioning, some that have had made great progress in getting their children developing and even some poor parents that have had their child regress.

They all have information to share and support to give. And they all have had to start at the same place… scared of the unknown. So don’t feel you don’t belong because you have nothing to share yet. You will, in time.

Also, remember that the Internet is there to help out. It can be daunting at times, all these people from all over the world that you don’t know but they’re real people and will help you just as much as a person face to face can. In fact, you will likely find a much larger support group online since you literally have the whole world at your finger tips. Twitter and Facebook groups/pages are a great place to start but there are also many forums and such to find.

5. Learn to be a super hero

That sounds a little strange but when you think about it, a super hero is compassionate, patient, strong, capable of doing amazing feats… that’s going to be you. In time.

I used to enjoy reading comic books, especially the early stage comic books where the hero has to learn what it takes to be a hero… and I find that it’s very similar to what you’re going to go through.

You’re going to learn to be far more patient than you ever thought you could be. You’re going to learn that all those children you thought were being bad actually weren’t. That they really wanted to be good kids. You’re going to learn that all those “weird” people that seem extremely socially awkward really aren’t that weird after all. You’re going to stand up and make sure that people are treated far better than they have been, when before you might have let it go or just said something without getting too involved.

On top of all that, unlike most parents that are forced to become doctors, psychiatrists, chauffeurs, banks and so forth, you’re also going to have to become a researcher, scientist, psychologist, therapist, nutritionist, supporter, event manager and even more.

It sounds pretty daunting actually, but the good news is that even though it does happen pretty fast, it’s still not over night. You’ll tackle each step as it comes along the way.

But in the end, so long as you never give up and you keep in mind who it is that you’re doing it for… when your child grows up and becomes capable of far more than what people told you they could do way back when they were first diagnosed… you’ll be a super hero.

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An ode to the single parent

By on December 4, 2010 in Autism

I’ve known a lot of people that are single parents. Actually, I think these days, we all know quite a few. It’s a very sad fact that marriages are breaking up more frequently than ever… with or without children. I’ve known some single parents that seem to just continue along as if they never lost their spouse and then I’ve known others that simply fall apart and can’t handle it.

Being more involved in the Autism community lately, especially through social media such as Facebook and Twitter, I’ve encountered even more single parents that don’t just deal with the every day parenting issues but with much larger issues… special needs children.

In them, I see so much turmoil, so much despair, so much anxiety…. and so much strength.

I’m getting ahead of myself, but when I talk to single moms (there are so few single dads, and with good reason), I am often talking to them about how they wish they could find a man, or had a man that would do the things that I think of as just every day chores, every day average things to do… such as dishes, laundry, cooking.. even playing with the kids.

You see, often times there are single parents living with a husband or wife. In those cases, the mother (or father) is doing all the parenting while the other person has little to no involvement. Yes they have a spouse, but they’re still a single parent. And to those who live in a marriage like this, I write this to you as well because you deserve to know this too.

I like to help out around the house and I really love to play with my boys. And when I share these things, I often hear words of envy or even sorrow from single parents that really makes me sad. Yes, because I feel bad for them but more so that they should consider me above average or ‘unusual’ in that I do all the things that I really think that should be what average men do.

Those people often say how they need to find someone, they need someone to help them… they can’t keep doing it alone. My response, usually, is that I disagree… I think they can keep doing it alone. Not that they should have to, but that they can because they are.

single parent

Single Parent

As a parent, I know how hard parenting can be.. as a parent with a child that has Autism, I know how hard that can be. And when I think, that even if I very generously gave myself a 50% in the ‘holding my own weight around here’ category, that’s still only HALF of it all and I would be the first (if not me then my wife certainly!) to tell you that 50% is more than generous. I do my fair share but my wife is the true rock of the family.

To stop and think, even for just a moment, what it would be like to take on 100% of it, is almost too much to comprehend. I simply know, completely and truthfully, that I could not do it. I can say, with absolute honesty, that I couldn’t do it.

Don’t get me wrong, I love my boys to death and I’d do anything I could for them but I know my limitations. I just can not juggle parenting and work and special needs issues and everything else entirely on my own. I’d hit a breaking point eventually.

Here’s the thing… I think it’s safe to say that I speak for the majority of people out there. Most people, with the state of the world as it is today, could not handle being a single parent. And earlier I said that there are so few single fathers, it’s not that I am saying it’s not possible, but I think that men are simply less capable of doing it then women are.

What I’m trying to say is that these women, and some men too, that tell me that they need help, they can’t do it anymore… I see them as the true inspiration, the true warriors. They don’t need help, they want help. They can do it because they have done it and are doing it now. Some help would make it easier, some help would give them a much needed break but even if they never get help, I know full well that they’ll continue on being a great single parent without it because they’ve already proven they can.

We all have our failures, and sure, a single parent may have more than a co-parent might… but the successes they have are theirs alone. Think about it… toilet training? My wife and I were a team… racing to be in there at a moment’s notice. Doing that alone? Sure, we could have, but it would have been far more difficult. Late night illnesses, temper tantrums, refusing to eat, sporting events, first dates…. oh the list goes on and on. But you are reading this, you already know the extent of the list just as well, or better, than I do.

Single parents have tackled these things all by themselves and do not look forward to having to tackle the next ones… because they will be very hard to do all by themselves, but they’ll do it! Just like they did the last ones. And I couldn’t be more proud.

Are you a single parent? Do you have a husband or wife that doesn’t help? I am very sorry that you have to go it alone but please, never ever doubt yourself. You’ve done it, you’re doing it and that’s proof enough for me that you can keep doing it if you have to. Help is out there, but even if it never comes, know that I am proud of you. I am amazed by you. I sit here knowing full well that I’d never have even made it as far as you have and no matter what you might think of all the things I do around the house to help… you are my inspiration.

It’s because of you that I help my wife as much as I can… not as much as I do, but as much as I can. You inspire me by showing me what true parenting really is… the determination, the self sacrifice, the iron willpower to always be there and to always do anything and everything that you have to do for your children no matter what.

I have faith that everything your child may lack from having that second parent is more than made up for with the amazing role model that you are before them… that they will grow up to know exactly what a true long term commitment can do and what devoting yourself completely can make you capable of.

Believe me when I say, with no offence intended, that I really hope that I never have to go through what you’re going through but that’s only because I know I’m not as strong as you are. Don’t ever give up and more importantly, please believe me when I say you don’t “need” help, but rather you “want” help. Because when you make it a need, you become desperate and start to see it when it’s not really there.. possibly putting yourself in a worse spot than you were before. But that’s a whole other topic.

I sincerely hope you do not have to go it alone for much longer but for however long you do continue to be a single parent, know that I am proud of you, your children are proud of you, all of us parents could learn from you, not the other way around, and that no matter how hard it may seem sometimes, you can do it. You’re all the proof you need.

Comments { 13 }

Resenting or even hating a family member with Autism

By on November 30, 2010 in Autism

My wife just started a new part time job selling children’s clothing at a local store, it’s a perfect job for her since she loves children and she loves dressing them up just as much. It’s been a couple of weeks and so her co-workers have adjusted to her being there and as such, found herself in quite the interesting conversation with one of them.

Cameron and Tyler

Brothers

The topic came up about our children, how Cameron has Autism and Tyler does not. At this point her co-worker shared that her brother has Autism and more so than that, she actually resents him… to the point of hating him.

Now, before I tell you what my wife’s response was to this, I’d first like to speculate just how much this might be the truth for other people out there… perhaps even more people than we might be aware of because it’s very likely that most would never confess such a thing, certainly not to anyone that would ever deliver that news back to the family.

It got me to thinking about it and even though I don’t understand, I sort of do understand too.

First of all, a sibling with Autism is likely to not play well with you, perhaps not even involve you at all and would have great difficulty sharing. Meanwhile your parents would likely ride you to no end to be extra nice to them because “it’s not their fault.”

You’d likely have to have them tag along with you or have them at your gatherings and so forth because it’s likely that your sibling wouldn’t have many friends if they have Autism. It’s possible, depending on severity, that they never really even had a normal birthday party and as such, your parents would impose all these extra demands and responsibilities on you, on your special day, to help your sibling feel involved.

I think you see where I’m going, the list can go on and on… even a high functioning sibling with Aspergers could become a burden on your life that you might grow to resent.

I would hope that most rational people would grow out of that resentment and finally understand what it was their parents were trying to do, but there’s no real guarantee of that happening, especially if the parents don’t recognize that and help it along some.

If the sibling is quite low functioning and needing a lot of help, to the point of (in your mind) stealing all of your parent’s time away from you… well, it’s easy to see where the resentment could grow from there.

Actually, the more I think about it, the more I can see how my wife’s co-worker could feel that way… how I kind of feel bad for her that she had to feel that for so long. Not because she is a bad person for feeling it, but because she never had the guidance she needed to help her understand how much good she was doing in all the things she was likely asked to do, or sacrifice. That she was a needed part of her sibling’s upbringing and life to this day.

I certainly can’t say that she’s justified in feeling that way, no one should resent or hate anyone for having Autism. They didn’t choose to have Autism. But when I put some thought into it, I can sort of understand how it may have come to be.

I think it’s just important that we remember that it’s a distinct possibility in our own children. To always remember that siblings can resent each other no matter the situation but it’s so very easy to happen when one child is “different.” My little one, Tyler, is a very very kind soul and something tells me I will have nothing to worry about, but I can’t ever let it slip though. If we are not careful, if we miss something, he could hold a resentment just as my wife’s co-worker does. And I would hate for that to happen.

So what did my wife say to her in response to that? I’m paraphrasing a bit here but basically she told her co-worker, and all her co-workers:

“Honestly, if any of you deliberately ignore someone who comes in and has a disability of any kind, not only will I call you out on it and set you straight, I will never, ever talk to you again. It’s just something I will not tolerate.”

Not only am I proud of her, but so were her managers. They agreed, everyone that walks in gets treated the same, disorder, disability or nothing.

Comments { 37 }

He’s my son

By on November 29, 2010 in Autism

One of my two year old twins, Logan, has autism, SPD, very significant food allergies, and seizures. The twin brother, Colton, does not. It has been interesting to me, in the nine months since Logan’s diagnosis, the various things people have said in response to that. A neighbor come into my home once and told me, “Oh, what a shame that Logan is that way. But what a comfort it must be that you were able to have one twin that’s not got problems. At least you have Colton and the other kids.” At the time, I was so angry, I invited this neighbor to leave and never come back. But that incident provoked a whole thought process in my brain which turned out to be a good thing!

Yes, Logan has autism. Logan has sensory issues. Logan has food allergies that are so significant that they can ( and have) cause anaphylactic shock. He is the only two year old I know that has a twinject prescription that has unlimited refills. But even with all that, more importantly, he is my son.

I do not love Logan any less than I love Colton or my five other children simply because he has autism and other issues. I do not love Colton more because he does NOT have learning delays, or allergies. While I do have to do things differently for Logan because of his special needs, it does not change the fact that he’s my son.

When I write about Logan on our blog, or introduce him to someone, I do not say, “ This is Logan, he has autism.”. I say, “This is my son, Logan.” You see, that thought process which my neighbor provoked, inspired me to search within myself and come to some carved in stone realizations.

Autism does not define my son. Autism is not the sum of his existence. What autism has done for our family, however, is taught us to sit back and enjoy the little things. Milestones that my other children hurdled as a matter of course, are now something we celebrate. Not because Logan has autism, but because Logan has mastered something new after days, weeks, sometimes months of practice and struggle, without every giving up. We have learned that a victory is a victory, no matter where you are in life.
Logan is not “that way”. Logan is Logan, and that’s all he will ever be. Just as I am me, and you are you. It’s as simple as that. Yes, Logan has therapy to help him. So what? I have spell check to help me, because I have fingers that like to type before I finish a thought. Both therapy and spell check are tools. Everyone has different ones, for different reasons, and it makes you no less of a person, by using them.
Loving your child is all encompassing. Whether the child walks or talks or grows up to be President of the United States, he/she will ALWAYS be your child, and you will always be your child’s parent.

Now, when someone “consoles” me because I have Logan, I simply say, “Why are you consoling me? Logan is a gift. He’s my son.”

Comments { 8 }

Hugs and Kisses in patterns

By on November 25, 2010 in Autism

When Cameron was a baby, he loved being swaddled and insisted on snuggle time for a good 15 to 20 minutes every time he woke up, whether it was in the morning or after a nap. It was that way for the entire first year but eventually he grew out of that and instead had a need to be off on his own doing something.

For most of his life, we rarely ever got a hug out of him and certainly never got any kisses, unless he’d let us kiss his forehead or something. It was just something we had become accustomed to as have many parents that have children with Autism.

A couple of months ago, something was different in Cameron. He woke up one day and suddenly he was hugging us all the time. Believe me, we never denied him… it was great!

Recently though, in the last 2 weeks or so, he’s cut back on the hugs once again. He only really gives us hugs before bed except he’s added two bonuses along with the hugs. One is that he also gives us kisses on the cheek and the other is that he does the hugs and kisses in patterns.

It’s never the same pattern from night to night but it is always the same pattern between my wife and I.

What he’ll do is run over and speak out his actions as he does them, for example “I give you a hug, and a kiss and then a hug and a hug and then a kiss and a kiss and then a hug and then a kiss and a kiss and a kiss.”

Once he’s done his pattern, he goes to the other parent and repeats the pattern.

Now, I’m not sure if this is his Autism showing or if he’s just a 5 year old that’s fascinated with patterns, since he’s been learning them in school… but it really is quite cute. And it results in us getting hugs and kisses (on the cheek anyway), so we aren’t about to discourage him from doing it.

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