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New Autism Diagnosis? 5 Tips for Parents

It’s a scene that many parents are all too familiar with. You’re sitting in a doctor’s office and you’ve just received news that your child has autism. You did know, of course, that something was wrong – after all, that’s why you had your child assessed – but you’ve been in a weird twilight zone of denial, in which you have managed to convince yourself that this thing that’s wrong with your child is just temporary, that it’s nothing a bit of speech therapy or O.T. won’t cure. And now, here’s this doctor telling you that your child will be living with autism for the rest of his or her life.

You can barely listen as the doctor goes on about how your child’s trajectory through life will be atypical, delayed, and fraught with challenges. You are too stunned to pay attention to anything but the hopes and dreams you had for your family crashing all around you.

How do you cope? How do parents find out that their child has a lifelong developmental disability – one that will in all likelihood necessitate some level of permanent care – and then go on to live some kind of a normal life?

Tip #1 – Remember that the doctor does not have a crystal ball

The doctor can’t just say to you, “Your kid has autism. See ya!” He has to talk to you about therapies, strategies, next steps – and that inevitably involves talk about how he sees your child’s future. But the thing is, many doctors tend to be a bit pessimistic, and they will give you the worst case scenario.

When we were getting my own child’s diagnosis five years ago, the doctor could not have painted a bleaker picture of the future if he had tried. We heard all about the stuff my son would never achieve, experiences he would never have, things he would never be able to do, the intensive level of care he would need for the rest of his life.

The doctor was not trying to be mean. He wasn’t trying to be negative. He was just presenting what he saw to be the reality. He had no way of knowing that in the first year of IBI therapy, this kid would make 23 months worth of gains. He did not know about the mathematical aptitude or unique problem-solving skills, and he could not predict that given the right educational environment, my child would be able to soar.

Anything the doctor tells you about your child’s future is just a guess – an educated guess, but a guess nonetheless. Don’t let bleak predictions make you give up hope.  Your child needs for you to believe in his or her potential, and to be frank, if you have a bit of faith, it will do your own spirit the world of good.

Tip #2 – Watch out for information overload

Human beings are curious by nature, especially when it comes to the wellbeing of their offspring. I would venture to say that most parents, on receiving their child’s autism diagnosis, go home and make a beeline for the computer so they can Google “autism”. I know I did.

The Internet can be pure crap, though. A Google search for “autism” yields over 76 million results. If we very generously assume that 10% of the information on the Internet is completely solid and scientifically proven and not the subject of any debate or controversy, that leaves you with seven million pages of “good” information.

It is a daunting task, trying to filter out the seven million pieces of “good” information from all the junk. It can make the most hardy of souls feel like they’re drowning.

Information is all well and good, but it has to be consumed in manageable doses, especially in the beginning. The diagnosing doctor will give you fact sheets and other information. That is all you need in those initial days while you are trying to adjust to this new reality.

Tip #3 – Get your name onto waiting lists and find out about funding

Your doctor will probably give you the names and phone numbers of local services, like speech therapy, O.T. , and autism intervention services. If he doesn’t, call him back and ask. Then call and enroll for the services. Some areas will have one central place that organizes all of the services; in other places it is more fragmented. No matter which way it works, it is better to start services as early as you can, and unless you live in some kind of Utopia, the places you call are bound to have waiting lists.

At the same time, find out about funding. If you live in a country with socialized health care, as I do, then many of the services for your child could be covered by the government. You may be entitled to disability tax credits and funding for respite care or specialized equipment. Your local autism foundation should have information about the available funding, and they may even have experts who will help you fill in the forms.

Tip #4 – Don’t let autism define your child

This may seem self-evident, but in the wake of receiving the blow of an autism diagnosis, it is hard to think of anything else. Parents of newly diagnosed kids often go through a kind of grieving process as they come to terms with the loss of what they thought their “reality” was. You may find your heart breaking every time you look at your child.

But remember that the diagnosis itself has not changed anything. Your child is still the same person he or she was yesterday, or last week, or last month. Your kid may have autism, but he or she is first and foremost a little kid, with those little quirks and personality traits that guarantee uniqueness.

Autism will always be a part of who your child is, but it is far from being the full picture.

Tip #5 – Take care of yourself and your relationships

When I saw my family doctor shortly after my son’s diagnosis, he gave me a startling statistic: about 80% of couples who are parents of kids with special needs or chronic illnesses split up within two years of diagnosis. It is easy to be on the outside looking in, and say that parents should draw strength from one another, but the truth is that something like this puts a huge strain on many relationships.

The thing is, each parent is thinking about autism, and how they can help their child. This becomes the singular focus consuming both of them, so much so that neither of them has room for anything else. And so they neglect themselves, and they neglect each other. It’s not their fault – they are just putting their child’s needs ahead of their own.

Do we not deserve to be happy, though? Yes, parenting our kids is the most important job we’ll ever have, but we are also individuals in our own right, and if we neglect ourselves and the relationships with the people we care about, we will drown.

So make sure you take time to be with your partner, just because. Spend time with your other children. Nurture your friendships, and most of all, take time out for yourself.

And don’t feel guilty about taking care of yourself. You deserve it.

(Photo credit: Kirsten Doyle)

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GUEST POST: It’s A Marathon, Not A Race

The first time I met Jennifer Krumins, she was having a fight with her laptop. She was slated to give a parent education presentation at George’s autism therapy centre, and she couldn’t get her technology to work. She endured some good-natured heckling from the front row (read: from my husband), got her PowerPoints to work, and went on to deliver a riveting presentation.

Jennifer is an autism parent, educator and author. She willingly shares her hard-earned wisdom for the benefit of parents who may be feeling a little overwhelmed by the whole special needs gig. Thanks to what I have learned from her, I have become somewhat good at advocating for my son in the school system without alienating anyone along the way. Whenever I start getting my annual IEP-related panic, I start posting stuff about it on Facebook in hopes that Jenn will respond with a gem of wisdom, and she always does.

Since the first time I met Jenn, I have attended more of her presentations and roped my mom into filling out a questionnaire for her book entitled Autism and the Grandparent Connection (which you really should read, even if you’re not a grandparent). We have become friends and we’re looking forward to having a drink together at this year’s autism symposium that Jenn will be presenting at.

Today, she tells us about her journey as an autism parent, and offers us some advice to help us along the way.

I don’t run marathons. I really admire people who do. I have some friends that train faithfully and test their endurance over the course of a few hours…by choice!

I am the parent of a sixteen year old boy with autism. Biggest marathon of my life. Yes, raising a child with autism is perhaps the supreme test of endurance. And yet, like many of my running friends, I would sign up to do it again because in my memory, the moments of success were far more remarkable than the moments of pain, exhaustion and heartbreak.

So what are the secrets of our successful marathon? Is it a medicated state of euphoria that I am experiencing….only to be rudely awakened by reality when the meds wear off?

No. I can honestly say that while the road has been long, harrowing at times and I have fallen on my butt on many an occasion…the journey has delivered far more emotional, intellectual, spiritual and social growth than our family could have dreamed.

The secrets have been revealed to me through fellow “autism marathoners,” trial and error, and most of all through the wisdom of children with autism (my own son and those students whom I have had the privilege to teach). I have learned some valuable tips to enrich the journey and increase endurance:

1. Instead of carb loading…try optimism loading. It’s very good for you and your child! Optimism is a way of looking at life and its inherent stresses. Being an optimistic person does not mean that one is always happy and peppy… it is that you choose to look for opportunity in the middle of adversity. Feed your brain with daily/hourly reminders that adversity is temporary, and that your child is making progress (even if it’s tiny steps). “Children learn what they live,” and as the adults in a child’s life it is our responsibility to model an attitude of positive persistence and hope. We can choose to believe that there is hope, meaning and joy within any given moment.

2. Take a long term approach to training. You would not be able to run your first marathon immediately after deciding to do so. You need to train. It’s the same thing with raising your child. Too often, we get stuck on a panic button in the early years. We may feel like we have to do it all right now in order to win the race against autism. It doesn’t work that way. Live in the present but plan for the future. Each day, each hour that you invest in being the kind of parent you want to be has a cumulative effect. In the long run, it is the lessons of perseverance, self- advocacy, and hope that will develop your child’s ability to be resilient and to ignite a sense of self- worth and self -confidence. Children learn by doing….by failing and trying again. They do not gain self- confidence when we tell them they can do it….and then we do it for them. The values you live by will be the greatest gift you give your child with autism….more than any treatment/intervention.

3. Visualize and rehearse the route. What are your long-term goals for your child? What do you envision for your child in the future? Design your plan so that you not at the mercy of someone’s map. Take the time to write down your thoughts on the following: What are my child’s strengths, skills, interests, challenges and limitations? What about my child gives me the most joy? What are my biggest fears or worries? What goals do I value for my child’s development? What specific behaviours, or other problems, have I observed? How did I react? What did I do in the situation? What could I do better next time, if anything? Have I recently noticed any changes in behaviour or ability? Be prepared to share what you know with those who are on the journey with you (even if you don’t like them). But remember, your plan must be in writing.

4. Talk with folks along the way, enjoy the course, smile often. The autism marathon is a social event. Too often we try to do it alone and we burn out. We need each other. We even need the people that drive us nuts because they keep us running; trying to learn more, be more and advocate more. Choose not to allow bitterness, resentment and hatred ruin the journey. We are the ones who suffer (as do our children) when we allow destructive feelings to shape us. Advocate one step at a time, one person at a time with patience and humility. The journey is much richer when we allow others to help. It is a sign of strength and selflessness to say, “Yes, I could use your help.”

5.  Set goals. Work to achieve them and stay focused on the things you want. Your life does not wait until you “fix” the autism. This is it. Treat your life as the gift it is. The time is now to take figure out what you will be living in the next five years (ten and twenty). Start with small steps towards those goals. Catch yourself if you are waiting to live your life. Perhaps, autism is in some way a vehicle for achieving those goals. Seize the time and model for your child what it looks like to live a goal directed life.

The marathon continues. There are more times of peace now…but never for too long. Struggle creates a rich environment for personal growth. Just set your eyes and heart on the target and keep putting one foot in front of the other.

To learn more about Jennifer and the books that she has written, check out Autism Aspirations.

(Photo credit: Jennifer Krumins)

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You Think You Know…

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today, I am also participating in the WEGO Health True Life Tuesday Blog Party, in which participants start their posts with the phrase, “You think you know, but you have no idea…”

You think you know, but you have no idea.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

  • The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)
  • It’s not as bad as I thought it would be. (Jacquie)
  • How much energy it takes at times…like mid-meltdown… (Lucette)
  • The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)
  • How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)
  • How strong it can make a mother! (Mimi)
  • How screwed up my idea of success was. (Jennifer)
  • How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)
  • The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)
  • How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)
  • How strong I’ve become, physically and emotionally…well, most days anyway. 😉  (Megan)
  • How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)
  • How hard but rewarding it is! (Hike. Blog. Love)
  • How much you truly learn from them! And I now know the real meaning of determination. (Vera)
  • How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

(Photo credit: http://www.flickr.com/photos/libookperson/6187904322/. This picture has a creative commons attribution license.)

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Santa Pictures And The Autism Family: 10 Ways To Not Go Completely Insane

  1. A week ahead of time, start showing your autistic child pictures of Santa Claus, and tell him that this is the dude whose knee he will be sitting on in order to get a picture taken. Try your best not to be distracted by the neurotypical five-year-old sibling who is bouncing around like the Energizer Bunny on steroids yelling, “Ho ho ho! Hairy Christmas!”
  2. At T minus two days, have a dress rehearsal at your house. This is imperative if you want the autie to wear a suit and tie and he has a tendency to melt down if you try to get him to wear shirts that don’t have horizontal stripes. You’ll probably want to have another dress rehearsal the day before.
  3. The evening before, bath your kids and wash their hair. Do the autie first. If you do the hyperactive neurotypical child first, the autie will head for the hills the second he sees the shampoo bottle. Instead, let the hyperactive neurotypical child dive for cover, hide the shampoo until it’s time to use it, and have a reward system handy. I use gummy bears. Whenever the autie opens his mouth to scream, I just shove another gummy bear in. I have become a master at washing a screaming, flailing autistic child’s hair in less than ninety seconds.
  4. Try not to think of the fact that sometimes, ninety seconds feels more like ninety years.
  5. When you wake up on the morning of the Santa visit, call the photographers who are doing the pictures. Tell them that you have a child with autism, and that if he’s made to wait in line he will have such a bad meltdown that the entire building will crumble and the place will end up looking like an archaeological dig. Most people will accommodate you if they know ahead of time that your child has special needs.
  6. Bring changes of clothes for the kids. As soon as the picture has been taken, the autie will want to put on a shirt with horizontal stripes, and if one isn’t available there will be trouble.
  7. Right before you leave your house, call the photographers again and find out if all their equipment is working. Technology comes with its share of problems, and if you have wait around while they try to get their printer to connect wirelessly to their laptop, your frustrated kids will band together with all of the other frustrated kids who are there, and they will start a Lord Of The Flies kind of mutiny. Believe me, you don’t want to caught with a crowd of angry children. They will overpower you. They will tie the grown-ups to poles and dance around them holding spears and chanting.
  8. Don’t let the absence of spears fool you. Kids can be frighteningly resourceful, especially when they are ticked off and have among their number an autistic child who knows how to think outside the box.
  9. When you are granted entrance to Santa’s domain, don’t mess around. Say hi to Santa, get the picture, and leave. Don’t wait for the autie to make eye contact with the camera lens. You will be waiting until the cows come home.
  10. When it’s all over and you are sobbing in the bathroom from the stress of it all, remember that this experience was positive. As you look at the picture, don’t think about all of the planning and angst leading up to it. Reflect on the fact that you have succeeded in doing a typical family activity. You have brought immense joy to the hyperactive neurotypical child, who shouldn’t be deprived of the opportunity to sit on Santa’s knee. And you have taken another step toward teaching your autistic child some vital coping skills that will help him for the rest of his life. Know this, and feel good about what a great parent you are.