Tag Archives: support

Autism Diagnosis: Blessing, Curse, or Both?

12 Jan

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?

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True Heroes: Guest Post by Kerry White

2 Jan

I go through phases where I spend a lot of time whining about how tough my life is. I’m working too much, I’m commuting for too long, I have too much to do when I get home, I get too little sleep. In the end, though, I’m always able to give my head a shake and reflect on the fact that I don’t have to do it alone. By the time I get home at the end of the work-day, the kids are home and fed. I have a husband who carries laundry baskets up and down the stairs so I don’t have to do it myself. I have someone to talk to at the end of the day, and when I go to bed at night, I have the physical and emotional warmth of another human being – one who may drive me nuts from time to time, but who I love and trust and wouldn’t want to trade for anyone in the world.

I have all the respect in the world for single parents, and often I wonder: how the hell does anyone do this alone? It’s hard enough to parent when there are two of you. Today’s post comes to us from one of those people I respect and admire so much. Kerry White is, like me, a transplanted South African. She lives in Texas, where she works as a freelance writer and raises her adorable little son. I am honoured to start of 2012 with this message of inspiration from a mom who helps us keep it all in perspective.

Thinking about what to write for this great and upbeat post was giving me a bit of a headache. I truly wanted to find that inner positive spirit I know I’ve got somewhere! I’ve been feeling so very Grinchy lately because it seems that the entire Universe has conspired against me to give me no end of grief in many areas. My son was sick with repeated rounds of ear infections, bronchitis, and a stomach virus, all in the span of 30 days. It was his 3rd birthday this month and I was so tired with a definite lack of funds in the bank so we sort of just didn’t do anything. I lost several high-value clients due to my need to put my son’s health and care first over their projects. I had someone steal my bank card information on the eve of Christmas Eve. Well, the list goes on and my own blog is filled with angst… but I am going to stop right here, right now.

This isn’t about being down and out. Because the truth is that, while things might be a bit of a challenge for me right now, I am still doing pretty okay considering everything else. My son’s health problems, while irritating and frustrating for us both, are fairly minor. My bank account will recover with a bit of hard work and a few nights of missed sleep for me. My son’s health issues do tend to clear up, with time and antibiotics.

Our house is warm, we have one another, and we have support from those who care about us. There’s even a special fella I’d love to make a much more prominent factor in our lives.

So often those supportive friends of mine tell me that I am a hero in their eyes, a supermom, and a super mom. However, I don’t feel it. I truly don’t. This led me to two other trains of thought.

There are parents who go through so much more with their darling children. Illnesses from which they will never recover, incredible and never-ending financial strife, endless trips to doctor’s offices, trips to the hospital from which their children may never return to their home, parents living in their cars or otherwise relying on the kindness of others to help them and their family. I have friends who were blessed to hold their babies in their arms, but for such a short amount of time before letting them go. I have friends who are parents without children in their arms yet.

Those are the true heroes, the super moms, the super dads, the superparents. They deserve the credit, they deserve the respect, they deserve the love, and the help. Truthfully, every parent needs to hear that they’re doing a pretty okay job at this parenting gig.

As parents, as people who care, we need to recognize in each other the greatness and the pure selflessness of loving parents. Sure things can be tough, rough, and overwhelming. But it seems to be the rare parent who doesn’t find things to be a challenge in one way or another. We need to support, encourage, and help one another realize that this is a big ole job and that it’s okay to not get everything perfect sometimes.

We’re going to feel like we’re at the end of our rope, we’re going to fall on the ground sobbing and begging whatever Powers That Be who may be listening to please friggen help us! But, with the support and help from our friends who may have been there, we can get through it! Maybe not with our sanity intact and our hair brushed, but get through it we will.

It takes a village, right? I think it goes a little bit further than that for parents; it takes a worldwide network of parental support to raise these kids we’ve been blessed with. 2012 is a great opportunity for us to start over, make resolutions to eat less, love more, and just be the support we need to be for others who are perhaps struggling just a little bit more than we are today.

I, for one, am counting my blessings now. I am counting my amazing friends and family members, including my amazing grandmother who is always there to answer the phone when I need support after a particularly challenging day. I wish for you nothing but strength, love, support, and the wisdom to know when you need to reach out to someone for support.

(Photo credit: Jorge Diaz1)

The Meaning Of Friendship

15 Apr

When George was a newborn, I joined an online group for parents of living children who had also experienced pregnancy or infant loss. Having gone through two pregnancy losses, I was paranoid about everything connected with my new baby. Did those sniffles indicate a cold or something more serious? Why wasn’t he nursing? Was that little bump to the head going to cause permanent damage? Was I actually going to be able to keep this tiny scrap of a human being alive?

In the online group, I found a home – a group of women whose experiences, while all very unique, gave us a common ground. We consoled and comforted one another, offered advice and reassurances, laughed and cried with one another. We became friends. And as you find in any group of friends, there was drama. We had disagreements and conflict. Some people left never to be heard from again, others left and came back.

Seven years on, the core group of us are still friends. The online group itself is not as active as it once was, because most of us are friends on Facebook, and we communicate that way. But we are still as much of a support for one another as we always were. Through seven years (and in some cases, more), we have seen each other through births and deaths, marriages and divorces, relocations, bankruptcies, illnesses, post-partum depression, and even a prison sentence. We have been there for each other through everything.

In 2007, George was diagnosed with autism. As I dealt with the implications of this, including my own emotional fallout, my girls were there for me. Their love and support helped keep me buoyant at a time when it would have been so easy to drown. These amazing women, who had already helped me stay sane through relationship and financial problems, the loss of my father, and my pregnancy with James, once again banded together to help me cope.

And then, a little over a year ago, I found another online group of friends – these ones parents of children with autism. They wormed their way into my heart in the same way my first group had. Although the general conversations centre around different issues, the sense of love and support is present in both groups. My autism friends have been part of my life for substantially less time, but they have helped me over so many hurdles. They tell me I’m a good Mom when I’ve struggle to deal with George’s behaviours. They celebrate with me when he achieves a milestone, and they commiserate with me when a stranger in a grocery store says something ignorant about my child.

Both groups of people are brutally honest in their opinions. They have the strength and the integrity to tell me what they really think, instead of telling me what they believe I want to hear.

From the two groups combined, I have met exactly three people in person.

Occasionally, someone makes a distinction between online friends and IRL (“in real life”) friends. To me, there is no such distinction. Just because you communicate with someone primarily through email or Facebook, that doesn’t mean they are any less real. The only word in the equation that means anything to me is “friends”. And that is truly what these people are. I cannot imagine my life without them. I do not know how I would have weathered the storms of the last few years if they hadn’t been there to keep me afloat and give me reality checks when I needed them.

This post is dedicated to my friends at PALC_group and Parenting_Autism. Thank you for being the wonderful people you are. I love you all.

(Photo credit: http://www.flickr.com/photos/ilamont/4329364198)

A Runner Is Born

7 Mar

When I was sixteen, I started smoking due to peer pressure. Although I was not quite a pariah in high school, I was not exactly popular either. I was one of a handful of girls who who kind of hung around on the fringes while the pretty, popular, sociable ones traveled in packs. All my life I have suffered from social anxiety, and high school was, for me, a time filled with awkward social angst.

Many of the popular girls would go to parties and smoke. They made it look cool, like the thing cool kids do. And so, in a misguided attempt to fit in with this crowd, I started smoking too. Throughout the next decade, I made the occasional token attempt to quit, but these attempts were never really sincere. They were driven more by guilt than anything else.

It was a lot easier to be a smoker in those days. You could legally smoke just about anywhere: in bars and restaurants, in airports, in shopping malls. You could even smoke in the workplace, although out of respect for my non-smoking friend Gary, who sat in the workstation beside mine at the office, I refrained from smoking at my desk. If I wanted to light up, I went to the communal coffee area and smoked there.

Shortly after I turned 26, however, something in me changed. It was a something that would prompt me to try quitting for real. It was not a concern for my health, even though – as my parents pointed out to me many times as they desperately tried to get me to quit – several family members had died from smoking-related illnesses. It was not the cost, which even back then was astronomical. It was not the nagging to quit that my family and friends subjected me to (in fact, because I can be stubborn and perversely bloody-minded, the nagging was probably my biggest deterrent to quitting).

I simply woke up one morning and realized that I was tired of being a smoker.

That was all it took.

I knew that I was not the kind of person who would just be able to go cold turkey. And if I was going to quit, I wanted to do it properly, in a way that would ensure that I would never smoke again.

Common sense told me that in order to break the habit, I would need to replace it with something else. Instead of having a cigarette with my morning coffee, or after my meals, or during my work breaks, I would have to do something else. I also realized that my endeavours would be a lot more effective if I took steps to ensure that I wouldn’t actually want to smoke.

So instead of quitting there and then, I picked a date six months in advance and decided that I would quit then. I used the six months to prepare myself, mentally and physically.

I took up crossword puzzles, to get into the habit of doing something else with my hands, and also, quite frankly, with my mind.

I told everyone I knew that I was quitting and when, to ensure that I would be mortified by embarrassment if I didn’t follow through. This also had the advantage of securing support from friends and family.

I recruited a friend to quit on the same day as me, just so that I wouldn’t be doing it alone. I have since lost contact with that particular friend, but I have heard through the grapevine that he has quit several times since then.

Most importantly, I made changes to my general lifestyle. I tend to be an all-or-nothing kind of gal: if I was going to improve my lifestyle in one area, I might as well go all-out. So I cut back on the junk food and started eating fruit. I kicked the Coca Cola habit and switched to water. I couldn’t bring myself to give up coffee entirely, but I did go from eight cups a day to about three.

It was at this time of my life, while I was preparing myself to quit smoking, that I started running for the first time. To be fair, the term “running” is a little grand for what I was doing. Bear in mind that I hadn’t exercised in years. I was overweight and unhealthy, and the smoking had put ten years’ worth of crap in my lungs. When I started running, I was really putting in about thirty seconds of wheezy plodding for every ten minutes of walking.

My friend Gary (the same Gary for whom I had given up smoking at my desk), who happens to be a marathoner, said to me, “Some day you will be running races.” Gary was unbelievably supportive of my venture to quit and be healthy. While other people at the office were telling me that I would never quit, Gary had complete confidence that I would succeed. He gave me tips on improving my lifestyle, and he provided me with beginner training programs that would help me make the metamorphosis from “plodder who can barely put one foot in front of the other” to “runner”.

At the same time, I was drinking in advice from my Dad, who had been a marathon runner in his youth. He showed me how to pace myself, how to breathe while running, how to handle hills.

I gave up smoking on the day I had scheduled, almost fifteen years ago. I have not picked up a cigarette, or even had a craving since then.

One day, about four months after I had quit, I woke up and went for a run. By that time I was walking and running in more or less equal proportions. I would walk for five minutes and run for five minutes. I felt myself making progress, but I still didn’t really feel like a real runner.

Anyway, on this particular morning, I set out on my usual route, and I found myself focusing a lot more on how I was running. I set myself little targets: just get to that traffic light. Just run as far as that tree. You can make it past those apartment buildings. I gradually became aware that my breathing, which had always been a little jagged from all the years of smoking, was now regular and strong. I took stock of how my legs were feeling and realized that the gradual build-up of exercise had made me stronger.

Eventually, I looked at my watch, thinking that my first five minutes of running must have elapsed by now. I was stunned – for the first time ever, I had run for ten consecutive minutes without stopping, without even slowing down. I took a one-minute walking break, even though I didn’t feel as if I needed it, and then ran my second set of ten minutes just as effortlessly as the first.

That day, for the first time ever, I felt that I had earned the right to call myself a runner.

Life Blood

12 Jan

What can I do?

This has been the question plaguing me for the last few days, while friend and fellow writer Amy sits at her critically ill baby’s bedside, waiting, hoping and praying.  I have been doing my best to send out an ever-expanding circle of positive energy to Amy, and to the baby, David.  I have tried to let Amy know – hopefully Amy does know – that I am with her in spirit, waiting and hoping and praying with her. I have been giving my own kids lots of extra hugs, letting them stay up past their bedtime just so that I could have an extra fifteen minutes with them, not getting so het up over silly things that prior to learning about the severity of David’s illness, would have had my knickers in a twist.

All of this is important.  I believe that the positive thoughts and the shifts in focus and the offers of support do at least let the intended recipient know that they are being thought of, that they are not alone.  But it doesn’t seem enough.  I have found myself wishing, longing to do something practical to help make this journey even a little bit easier for Amy to bear.

What can I do?

The obvious problem is that Amy and I live in different countries.  If I lived in Ohio, I would be able to do stuff.  I could cook meals for Amy’s family.  I could take her laundry away and bring her fresh changes of clothing.  I could bring books to read to Captain Snuggles. I could offer to babysit her kids so that she could get time with her husband.  The list of what I could do if I were there goes on and on.  But the fact remains that I live in Toronto and Amy lives in Ohio.

What can I do?

Realistically, my ability to help Amy in any practical sense is severely limited.  But this morning, I thought of something I can do that could potentially help other people in her situation, in David’s situation.

Over the last few days, Captain Snuggles has had multiple blood transfusions.  His mother has watched desperately as his life blood has flowed out of him faster than it can be replaced.  Without the transfusions he has received so far, it is extremely likely that David would not still be with us.

That blood has to come from somewhere.  I have plenty of what I assume is perfectly good blood: there is no reason for me to not give it to someone whose life might well depend on it.

The last time I donated blood, it did not go well.  But that was twenty years ago, and due to extremely stressful events that were happening in my life at the time, my health had taken a hammering.  Now my health is fine, and I feel inspired to give it another go.  There is a blood donor clinic at my place of work next week, and I have made my appointment to be a part of it.  For the next week, I will be eating lots of healthy stuff and doing what I can to make sure my blood is whole and healthy.

Maybe this small act will save someone’s life.  Maybe it will bring some family back from the brink of despair.  Maybe it will give someone hope.

Amy, if you are reading this, I really wish I could do something that would help you directly.  But please know that my decision to donate blood is inspired by you and your beautiful boy.  Even though he will not physically benefit, I am doing this for Captain Snuggles.

(Photo credit: Flickr Creative Commons Attribution License)