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Robin Williams And The Tragedy Of Depression

August 12, 2014 By

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Last night, for the first time ever, I cried over a celebrity’s death. My tears had nothing to do with the loss of such an immense talent – although I have been a Robin Williams fan for decades – and everything to do with the fact that another life has been lost to mental illness.

I suspect that I am not alone. I suspect that right now, people all over the globe are relating to the drowning feeling of depression that drove Robin Williams to seek such a desperate escape. Several times since this tragic news broke, I have seen variations of one overriding question on my social media feeds: if a man with the financial resources of a celebrity could not find the help that he needed, what hope is there for the rest of us?

The truth is that while money can buy therapy, it does not buy the understanding of those around us. I started seeing my therapist four years ago, and although it has undoubtedly helped me, the benefits I have gained have been severely restricted by the stigmas and misconceptions that surround mental illness to this day. A number of conditions have to be met in order for therapy to truly work. The right therapist is one. Adequate support and understanding in your daily life is another.

It’s not to say that people don’t care – it’s just that many of them don’t understand. If I had a dollar for the number of times I’ve been told that depression is not a “real” illness, I’d had enough for an entire team of therapists.

I’ve written about the misconceptions surrounding depression before, but they are worth repeating, especially now that Robin Williams has put such a focus on it by taking his own life.

* When I am in the grip of depression, I cannot “snap out of it”. Asking someone to snap out of depression is like asking them to snap out of a heart attack.

* Depression is not to be equated with sadness. It cannot even be regarded as a severe form of sadness. Depression and sadness are two completely different things, in the same way that asthma and the common cold are two completely different things.

* Suicide is not a selfish, cowardly act. It is the act of someone who is desperate to get away from a terrible, desolate, frightening situation, and who sees no other escape route.

* Contrary to a popular Facebook meme, people with depression are not “focused on the past”, and they will not magically cure themselves by living in the present.

* Sometimes, for some people, the right medication can lead to dramatic improvements in quality of life, but it’s not for everybody. Someone who refuses medication is not being stubborn. They might be afraid, or they might have learned from experience that it doesn’t work for them.

* A person with depression is capable of smiling, laughing at jokes and having a good time with friends. If you see a picture of someone smiling, don’t say that they “can’t be that depressed”. Robin Williams himself is a perfect illustration of that.

This list is a drop in the bucket, but if we can shift peoples’ understanding on these few points, that will be a good start. If you suffer from depression, don’t be afraid to talk about it and ask for help. It’s really nothing to be ashamed of. If you know someone with depression, be there for them. One of the scariest things for a person with depression is the feeling of being alone in the world.

The death of Robin Williams is a great tragedy. It will be an even greater tragedy if we don’t learn something from it. If his death leads to greater awareness and understanding, and saves just one person from suicide – well, I think he would like that.

This is an original post by Kirsten Doyle. Photo credit: BagoGames. This picture has a creative commons attribution license.

Filed Under: Celebrities, Death, Depression, Loss, Mental Illness, Myths, Suicide Tagged With: , , , , , , ,
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GUEST POST: Fighting With My Shame

June 6, 2012 By

Kerry White has a few things in common with me. She was also born in South Africa, and she also lives in North America (Texas, to be exact). Like me, she knows what it’s like to parent a small energetic boy. And like me, she knows what it’s like to live with mental illness, including depression and social anxiety.

I first got to know Kerry through a now mostly-defunct Yahoo group called Homesick South Africans. During its heyday, this group was the venue of some lively discussions – a few of them controversial, many of them humourous, almost all of them supportive. Several friendships that formed during the group’s active existence have continued through social media. I am so grateful to the Internet for existing, because without it, my friendship with Kerry would not have evolved in the way it has. This is a woman for whom I have a great deal of admiration and respect.

As I strive to talk about my own struggles with mental illness, I am immensely grateful to Kerry for this post, in which she frankly and courageously shares her own journey.

So I think I’m crazy. Absolutely strait-jacket-heavily-medicate-me-and-lock-me-up crazy! I have felt this way for a very long time, probably since I was about ten years old and reading my first Stephen King books. I recognized the signs of madness in my mind from the characters in some of his books.

As a much more jaded adult, I now recognize myself for what and who I am. I have severe depression, social anxiety, obsessive compulsive disorder, and it all comes bursting forth in the less than neat and tidy package of major panic attacks. I live with mental illness, and I am terribly ashamed of it. I feel broken, less of a person, less of a woman, and worst of all I feel like a terrible mother because of it.

Growing up in South Africa in the 80s, my mental illness was not recognized for what it was. My anxiety, and shyness, and my odd acting out behaviors gave the impression that I was a difficult child; not that I was a child in dire need of some thought of help.

Don’t get me wrong, my childhood was not unpleasant at all. My parents were hard-working and loving individuals who did the best they could for us during rocky financial times. But there was no such thing as depression, anxiety, panic attack, mental illness. There was just doing what needs to be done, threatening electroshock therapy when I refused to communicate about an assault when I was a teenager, and threatening to send me away to a mental institution. At 16 I was admitted to a psychiatric hospital for teenagers who are in crisis. I felt normal! I felt accepted! I felt safe! I was there for two weeks and then released, but promptly tried to kill myself because I didn’t get the support I needed at home. I spent another several weeks in there, but soon learned that I was better off shutting the part of myself I thought to be crazy away. I was never going to get support outside of the walls of that mental health hospital. I was always going to be told to just suck it up and get over it. Because that was just the way things were handled.

I have spent the better part of my adult life trying to just get over it, trying to avoid the idea that I have a problem that no amount of “getting over” will fix. I have tolerated abusive partners, abusive bosses, and abusive coworkers; because I felt I wasn’t worth more.

When I had my son, my depression and anxiety kicked into high gear – but I expected it to. I refused to take the prescribed antidepressants, in case they made me worse (as others have done in the past), or someone saw me as too weak to raise this child. But I do recognize now that I should have not only taken the medication but sought out help. Help wasn’t offered for my “baby blues” and I didn’t go find it. It got to the point, several times, where I wanted to end my life because I was so miserable and felt like such a failure.

I’ve found myself mentally standing on a ledge, with nothing behind me, not even one hand to reach out and pull me to safety. But then the knowledge of the small body pressing against me, raising out a hand and calling out for “mommy” reminds me that if I jump off of this mental ledge then he loses himself, too.

As my son’s needs have changed, so has my mental illness. It has to. I have to get us dressed and get him to daycare so that I can work. I work at home, which just encourages my social anxiety. We need to go to the store and get milk and the occasional toy car, so I steel myself and leave the house. For him.

I’ve made myself get on a plane to visit family; I’ve made myself go visit friends. But it is hard. I have to find a way to change this, for my son.

So what is my next step then? I have more anxiety than will allow me to even see a therapist. What if they deem me to be as unfit of a mother as I feel some nights when sobbing over a panic attack or crying in my office when he is at school? I can’t just “suck it up and get over it.” I have tried. Believe me, I have tried.

I feel crazy. Insane. Broken. But this is my normal. I just wish I didn’t feel so much shame and fear along with it. How do I find the inner strength I need to get help and not feel so broken? Help that will not judge me as being weak or unfit as a single parent?

My heart breaks for others who feel like I do, and I do my utmost to help them. I even write helpful blogs and books for a counselor who helps women like me!

Why then can’t I find what I need in order to help myself work through this? At what point will my son notice that his mommy isn’t like other mommies? I do not want to continue trying to bury my mental illness, but I do not know any other way to function. I am not strong, I am doing what I need to do in order to provide for this boy that the universe has seen fit to place in my care.

To find out more about Kerry and the children’s books she is writing, visit her website!
 
(Photo credit: Kerry White)
Filed Under: anxiety, Depression, Guest Posts, Kerry White, Mental Illness, OCD, parenting Tagged With: , , , , , , , , , ,
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Guest Post: Animals And Autism

May 15, 2012 By

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

Guest post exchange day was yesterday, but really, with so many phenomenal bloggers in the same challenge, how could I pick just one? Today’s guest blogger, Sarah, focuses on an area very close to my heart: animals, their relationships with people, and how they can facilitate healing. She just finished her first year of the Doctorate of Physical Therapy program at LSU-New Orleans. She is  passionate about animals and children and plans on integrating animals into her physical therapy practice after she graduates.

As a lifelong animal lover myself, I am drawn to Sarah’s blog like a magnet, and am thrilled that she agreed to write for me. Today, she shares with us how animals and children with autism can have a very special bond.

When people envision their perfect life with 2.5 kids and a white picket fence they also usually include a pet in the picture. After parents hear their child given the diagnosis of “autism”, often the idea of having a pet is questioned. In general, animals definitely provide many benefits to their owners, but as Kirsten recently reminded me “If you’ve met one person with autism, you’ve met one person with autism.” So what works for one child or family may not work with another.

The cool thing is that there have been several groups that have seen a lot of positive effects in children with autism after interacting with animals.

Max is one of Austin Dog Alliance’s “special dogs” available for adoption.

Austin Dog Alliance has group social skill classes where they use dogs to teach children with autism and Asperger’s. Some of the topics touched on in these classes include verbal and motor skills, interacting with and empathy for others, and appropriate behaviors both in and out of the classroom. These same skills can be achieved with a pet at home. The child can practice speaking to the dog and learn to recognize and understand the animal’s non-verbal cues. In doing this they are maintaining eye contact, which some people with autism struggle with. They can also learn to care about and for another living creature. This lesson can then translate to their interactions with other people.

Horse Boy Foundation brings kids in contact with horses to help them through what they call a “simple 6 stage process”. They’ve found that allowing kids to lie down on a horse’s back cuts down on their stimming (a repetitive movement that self stimulates the senses). Interacting with the horse is good overall sensory work while the actual horseback riding can be soothing because of the rocking motion. Again, giving commands allows the child to work on verbalization. I know that for most people owning a horse is out of the question, but there are several places that have horseback riding lessons where your child could get some of the same benefits.

http://www.youtube.com/watch?v=V11E-N2pK_o (it’s a youtube video about the Horse Boy Method)

Lois Brady found that a potbellied pig named Buttercup works wonders with the children. She’s a speech language pathologist, so of course her focus is getting the children to talk. But she has found that her pig is great for sensory work because he has different textures in different places on his body. The best thing about him is that people don’t have preconceived fears about pigs, like they might with a dog or even a horse.

(Photo from: http://www.prweb.com/releases/animal_assisted_therapy/continuing_education/prweb9261001.htm)

Buttercup is a great example that really any kind of pet can be used to help with things like speaking, motor skills, empathy and self-confidence. Some people prefer to have an animal specifically trained as a service animal and that has its benefits as well. You can read my post about autism service dogs to learn more about them. The most important thing is to decide what animal (if any) will be a good fit for your family.

Check out more great posts from Sarah Allen on her blog, Animals Help Heal. You can follow her on Twitter @AnimalsHelpHeal.

Filed Under: 2012 Wordcount Blogathon, Animals, autism, Guest Posts, Healing, Special Needs, Uncategorized Tagged With: , , , , , ,
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Mental Illness: Don’t Be Ashamed

May 3, 2012 By

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

Today’s post is written in observance of Mental Health Awareness Month, which runs through May.

Several years ago, as I sat nursing my newborn baby, I watched a talk show in which Tom Cruise said something to the effect of post-partum depression not being a real condition. All these moms needed, he said, was to follow good exercise and nutrition plans, and they wouldn’t have a problem. He was convinced, he said, because he had done research.

The timing of this talk show, with its rantings by someone who by definition will never know what post-partum depression is like, could not have been worse. I was in the thick of post-partum depression myself at the time, and although my particular brand of it never included a desire to hurt my child, fantasies of my own death were a very real part of my life.

I did not seek help for my condition, and in fact I would never have been treated for it had my family doctor not noticed that something was amiss during a visit for something completely unrelated. I had a whole set of issues with that particular doctor, but I fully credit him for saving my life. That’s how close I was to the edge of the cliff.

The fact that I suffered from post-partum depression at all was no surprise to me. If anything, I had been surprised when it hadn’t struck after the birth of my first son.

Even as a teenager, I was prone to bouts of depression. My parents were not really aware of it, and on the few occasions when someone actually noticed that I was not OK, it was always put down to adolescent hormones.

“You’ll grow out of it,” people told me.

Except I didn’t. My depression continued into adulthood, coming in waves that sometimes threatened to drown me completely. It would hit completely without warning, hang around for weeks or months or even years, and then disappear just as suddenly.

During my teens I blamed hormones. For two decades after that, I blamed myself. I blamed the fact that some unwise choices I made during my college years led to trauma that had a lasting effect.

I didn’t seek help. Of course I didn’t. My depression and everything that went with it was my own fault, right? I didn’t deserve to be helped.

When it came down to it, the mental health issues that I have experienced throughout most of my life – be it post-partum depression, good old garden-variety depression, anxiety, and everything else – have been a source of shame to me.

And that, my friends, is a big problem in our society. Too many lives are destroyed and lost because people suffering from mental illnesses feel too ashamed or embarrassed to seek help. Feelings of unworthiness and self-blame act as barriers to the pursuit of inner peace and happiness.

Tom Cruise sitting on his high horse effectively blaming mothers for a debilitating and often life-threatening condition did not help the cause of the mental health community one little bit.

Eventually, just over a year ago, I finally made the very difficult decision to seek professional help. The road since then has not been smooth. With the guidance of my therapist, I am reliving past traumas and undergoing oft-uncomfortable introspection in search of the roots of the conditions that plague me. But I at least know that I am heading somewhere other than a dead end.

My quest for mental health is by far the hardest thing for me to write about.  Because in spite of the steps that I have taken to get help, I have not quite managed to shake the decades-old conviction that this is something for me to be ashamed and embarrassed about.

If I stay silent, though, I remain a part of the problem of the stigma associated with mental illness.

In starting to speak out, however tentatively, I hope to become a part of the solution.

(Photo credit: http://www.flickr.com/photos/militaryhealth/3485865665/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, Depression, Mental Barriers, Mental Health, Mental Illness, Post-Partum Depression, Therapy Tagged With: , , , , , , ,
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The Good And The Bad

April 26, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 27 – 5 challenges, 5 small victories: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Autism can be a very complicated thing to live with. Its manifestations change from day to day. One day, my son will be able to tolerate loud noises but a small change in routine will send him into meltdown. The next, we’ll be able to turn his entire routine upside down but anything louder  than a whisper will set him off. Different strategies work for different kids on different days, and everyone you might see guidance from is convinced that their opinion is the right one.

The things I find most challenging about being an autism mom don’t really have to do with the autism itself. Whatever might be going on with my child on any particular day, I just deal with it. Sometimes it’s hard, but I always know that I’m doing my best, my son is doing his best, and at the end of the day we’ll all survive.

My challenges tend to come from sources other than my son and his autism. I list them in no particular order.

  1. The judgmental critics. It’s a moment every autism parent has lived through at least once. You and your child are in a grocery store, which let’s face it, is a mecca for sensory overload, and your child is getting more agitated by the second. You throw things into your cart at quickly as you can, but just as you get to the checkout, your child reaches his breaking point and explodes. As you are trying to calm him down, some snarky stranger loudly proclaims, “What that child needs is a good hiding.” I once heard someone say (referring to me), “If that mother was doing her job properly, this wouldn’t be happening.” Like I’m not already carrying around enough angst with me. With my social anxiety, I’m not great at the quick comeback, although I’m definitely better than I used to be.
  2. The third-person talker. These are the people who will talk about someone who is present as if that person were not in the room. The chances of this happening increase exponentially if the subject of conversation happens to have autism. I get it all the time. “Would George like a hamburger?” they will ask. My answer always seems to throw them a little: “Ask him,” I say. Yes, it is true that George is not the world’s greatest talker, and may not respond to everything that is said to him. But, you know. At least give the kid a chance to try. If he struggles to answer, I will help him.
  3. Guilt. I was educated at a girls-only Catholic school run by nuns, and I am married to an Irish Catholic man. I can therefore say with some authority that the Catholics turn guilt into an art form. And some of the guilt that I feel as a special needs parent (hell, forget special needs – just as a plain old parent) almost makes me think I should just convert. I feel guilty about everything. Did the Taco Bell I ate during pregnancy cause George’s autism? Did I give him enough affection as a baby? Am I paying enough attention to my other son? Did I get too mad at George when he tipped over the laundry basket?  The list goes on and on, and my guilt makes me constantly second-guess myself when I should just be following my parental instincts.
  4. Time. Time very often seems to be my enemy, so much so that I sometimes regard it as a person. Time with a capital T. No matter how much I try, Time seems to run away from me. At the end of each day, there is always something that remains undone. Parenting is my absolute number 1 priority, so my kids’ needs are always taken care of. But I tend to let other areas of my life slip occasionally, and that is detrimental to my physical and mental health.
  5. The Internet. When George was diagnosed with autism five years ago, the first thing I did when I got home was Google autism. I obsessively read web page after web page. Every link that I clicked on seemed to have some information that flatly contradicted something I’d read somewhere else, and in the end my brain was hurting from information overload. I was overwhelmed by not knowing what information to trust. Since then, I am wiser in my use of the Internet and I have learned, for the most part, how to tell the good information from the noise. But the Internet, with all of its gazillion theories about the causes of autism, can still hinder more than it helps a lot of the time.

In my house, there is no such thing as a “small victory”. Every single accomplishment, all of the positive things in our lives – are massive, big things. That’s the way it often is in special needs families. We tend to place extra stock in things that other families take for granted. And as hard as it can be to live with autism, there are many things that I am grateful for, that enable me to keep chugging along even at times when I just want to cry.

  1. Love. Love really does make the world go around. Out of all the challenges my son has, lack of affection is definitely not one of them. Both of my sons give the best hugs that I can carry around with me all day. My favourite moments are when my boys somehow manage to squeeze onto my lap together to give me a hug. I sit there, with my arms full of squirmy, giggling kid, and never want the moment to end.
  2. Running. Yes, running keeps me sane, and when something stops me from doing it – like illness or injury – depression starts to creep in. The fact that it keeps me in good physical health is almost a by-product of running. My prime reason for doing it, along with raising funds for autism, is to keep my mental health on an even keel. I struggle with mental illnesses like depression and anxiety, and there’s no better way to combat my darker moments than a good long run. I am stubbornly resistant to using medication to deal with my issues, and running acts as a decent substitute for chemicals most of the time.
  3. Therapy. It has been said that running is cheaper than therapy, and while that is certainly true, I actually do need both. The therapist/client relationship is a very strange one. It involves the client placing complete trust in someone they actually know nothing about. I have been going to my therapist for a little over a year now, and it has taken me almost all of this time to build up my trust to a level where I can really open up during my sessions. Sometimes the sessions are very hard and they make me feel all weirded out for a while, but the truth is that once a week, I get the opportunity to talk without reservation in the sanctuary of my therapist’s office. I can say whatever I like and there will be no judgment or anger.
  4. Writing. I am somewhat inept as a verbal communicator, and I experience high levels of anxiety in social situations. When I am talking to other people, I hold back a lot, not only because of my natural shyness, but because my brain actually doesn’t work well during conversation. I can formulate a completely coherent thought in my mind, and even mentally phrase how I want to say it, but when it comes time for me to speak, my words get lost somewhere between my brain and my mouth. With writing, that doesn’t happen. I truly have a voice, and I treasure the opportunities to speak my mind on things that are important to me.
  5. The Internet. The Internet is both a blessing and a curse. Despite the evils described in my “bad” list, the Internet is a haven of sorts. I belong to two Internet support groups – one for moms who have suffered pregnancy or infant loss, and one for parents of children with autism. Both of these groups are places where I can vent my concerns, ask for advice, or celebrate good news. Some of my best friends are people who I have known online for a long time, but have never met in person. Here’s the wonderful thing about the Internet: no matter what I am going through on any particular day, I will always be able to find someone who knows, at least to some extent, how I feel.
Filed Under: autism, Challenges, Communication, Health Activist Writers Month Challenge, Mental Health, running, Victories, WEGO Health Tagged With: , , , , , , , , , , ,
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Autism: Seeing The World From A Different Angle

April 26, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 26 – Health tagline: Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

Seeing The World From A Different Angle

A couple of years ago, George had a block of Occupational Therapy appointments. He needed help with some sensory issues he was having, and he had virtually no fine motor skills. My husband and I were always present at the sessions, mostly to observe and learn techniques we could use at home. We didn’t actually do anything during the sessions. We just let George and the therapist do their thing.

One of the tools in the therapist’s toolbox was a board full of evenly spaced holes that went with a bag full of coloured pegs. George would be asked to fill the pegboard with pegs. He could choose whatever colours he wanted: the point of the exercise was to strengthen his hands. It was not a task George enjoyed, because he struggled with it so much. He didn’t bother to select colours – he would just take pegs out of the bag at random and try mightily to get them into the board.

One day, he deviated from this way of doing things. He emptied the bag and separated the pegs into piles according to what colour they were. And then, for the first time, we saw him systematically select his pegs and make a pattern on the board. My husband was seated beside George, and I was on the opposite side of the table. The therapist was behind George, helping him correct his grip on the pegs when needed.

As George filled the board, the pattern became clear. It was oddly soothing to watch him make his little design, knowing with each turn which peg he would use next. I felt comforted by the predictability my son had created.

All of a sudden my sense of calm was jarred when George picked up a yellow peg and put it where I’d been expecting a blue peg. This wasn’t right! What about the pattern? I looked at my husband, who seemed surprised at this unexpected turn of events. However, he didn’t look quite as horrified as I felt. I’m not sure why I had placed so much stock in this pattern, since that wasn’t an objective of the exercise, but I really felt disturbed.

A few pegs later, the pattern was history, and George appeared to be placing the pegs randomly. My husband got up to stretch his legs, and he walked around to the side of the table. He stopped dead and as he stared at the board, a look of astonishment spread across his face. Not wanting to disrupt George, he whispered in my ear.

“You have to look at this from over there.”

I stood up and went to where he had been standing, and immediately, I saw what had amazed my husband so much.

Changing my perspective of the board by a mere ninety degrees made me see that George had not abandoned his pattern at all. He had simply been shooting for a pattern completely different to the one I had expected. What he was creating was complex and utterly unique. It was one of those things that needed creative thinking and planning. At that moment George reminded me of those chess players who can plan the next twenty moves and know that they are going to skewer their opponent at the end of it.

The pattern was quite, quite beautiful. And it was something that needed George’s own unique brand of thought.

Individuals with autism do not look at the world the same way we do. And that is a good thing.

Because if it weren’t for autistic thought, I would not have gotten to see that beautiful pattern that day.

The tagline I chose is not one that I created myself. I borrowed it from the T-shirt I wore when I ran last year’s autism run. The T-shirt was designed by my friend, whose name is also George, from the Geneva Centre for Autism. I could not think of any tagline that so perfectly encapsulates that day at the O.T.’s office.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Health Activist Writers Month Challenge, O.T., Patterns, Therapy, Thinking Differently, WEGO Health Tagged With: , , , , , ,
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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition Tagged With: , , , , , , , , , , , , , ,
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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition Tagged With: , , , , , , , , , , , , , ,
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Hat Boy

February 22, 2011 By

Me and my Hat Boy

George has a thing about hats. He wears them all the time, even when he goes to bed. We have succeeded in getting him to take it off at bathtime, and both the school and the therapy centre have him remove it for his periods of instruction. But when he is at home, the hat is always on his head.

It’s not just any old hat, either. George is very picky about his hats – he will only wear his hat, and if his hat is not available, things in my household get very noisy and fraught as we struggle to keep him from banging his head in frustration. From time to time we have to switch out the old hat for a new one, because – well, you know – George is seven, and seven-year-olds have this habit of growing really fast.

The “new hat days” are traumatic for the entire family, so we tend to hold on to the current hat until the seams start to pop.

However, with age comes wisdom, and we have learned that whenever it’s time for a new hat, we have to get two that are the same. That way, when one starts smelling a bit ripe, we can throw it into the washing machine and let George wear the other one.

We suspect that George wears the hat to gain that slight feeling of pressure around his head. Kids with autism are frequently big on physical pressure, and George definitely falls into that category. He climbs onto the back of the couch and jumps from there onto the floor, because he craves the deep pressure input to his feet and legs. It would make sense for him to want pressure around his head as well.

In addition, though, I think George wears the hat in order to protect his head from being touched. He really, really, REALLY does not like people touching his head. He allows me to remove his hat and stroke his head, or run my fingers through his hair, but after just a few seconds he gets antsy and squirms away.

This is a problem.

For a start, there’s the practical problem of hair-washing. I don’t wash George’s hair as often as I should, because it is just so stressful for him. Hair-washing is a joint effort between me and Gerard, and it has to be planned with military precision, right down to getting my mother-in-law to whisk James away for the duration. Basically, what happens is that I wait until George isn’t watching, and then I fill a plastic basin with water and lay a shower curtain on the kitchen floor. Then Gerard uses his arms and legs to immobilize a screaming George, and I wash his hair as quickly as humanly possible.

It sounds barbaric, and I always feel so bad that I end up in floods of tears, but it is the only way we can wash his hair.

When people hear of the difficulties, they say to me, “Just keep his hair short”. If only it were that simple. This kid won’t let us wash his hair normally – why would anyone assume that he will let us anywhere near him with a pair of scissors or any other haircutting device?

Cutting his hair is as traumatic as washing it. So what I have to do is creep around my own house in the dark like a burglar, gingerly remove George’ s hat from his head, and then tentatively cut whatever bits of it that I can reach while he is sleeping. Sometimes it takes up to two weeks to complete a haircut because George tends to lie down the same way every night.

We may be making progress, though, thanks to the wonderful folks at the therapy centre that George spends four mornings a week at.

The therapists had me complete a sensitivity questionaire, describing the issues with washing and cutting his hair, and two weeks ago they started a desensitization program. This morning George’s therapy supervisor called me to give me an update.

“We combed his hair,” she said.

“What, ALL of it?” I asked, incredulously. Usually my hair-combing attempts have to be aborted, so each day I start on a different side of his head, just to ensure full coverage every two days.

“All of it,” said the supervisor. She went on to tell me that she had put ear-muffs on George, and that this seemed to help with the sensitivity around his ears.

“He kept on ear-muffs?” I asked. Not sounding very intelligent at this point. Think Village Idiot.

“AND,” continued the supervisor, “We have sprayed his entire head with leave-in conditioner.”

Holy bat, Crapman! Who is this short person and what has he done with my son?

So, it would appear that the desensitization program is working like a charm. It will still be a long time before we can actually wash his hair normally, or cut it while he is awake, but with baby-steps, we will get there.

The staff at the therapy centre are absolutely incredible. Thanks to them, George will be ready for discharge into full-time school (with special ed support) by September.

He might be ready.

Me, not so much.

Filed Under: autism, Hair, Sensory Issues Tagged With: , , , , , , , , , ,
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Letting Go Of The Training Wheels

January 10, 2011 By

In September, my son George will be making the transition to full-time school.  For two years, he was going to school one day a week (he is in the “mild intellectual disability” program at the public school), and for the other four days he was going to the therapy centre to undergo IBI.  For those not familiar with the term, IBI stands for Intensive Behavioural Intervention.  It is intense, one-on-one therapy based on prompting and rewards.  It can be used to teach social skills, daily living skills, routine, pattern recognition, and many other things.

Under IBI, George’s progress was off the charts.  He did so well in the first year alone that he made 23 months’ worth of gains in a twelve-month period.  The second year saw similar improvements, and the tiny spark of hope that had been present in me and my fiance bloomed into this kaleidoscope of possibility.  George can be held up as a shining example of what many kids can achieve in IBI.

After two years, though, it was time to move him to a new level.  The one area where George was not making significant improvements was in his social interaction skills, and IBI, by its nature, does not address this deficit very well.  IBI is one-on-one, and George needed to be in a placement that would involve group interaction.  He was also having trouble following school routines.

He was placed in his current program, which is called School Stream.  He spends every morning at the same therapy centre where he received IBI, in a simulated classroom setting with four other kids.  There is a teacher, and each kid also has his own one-on-one support person. The kids do school-type activities, like raising their hand to answer questions, participating in circle time, taking turns, and playing interactively in the gym.  At lunchtime, the school bus picks the kids up and takes them to their respective schools, where they spend each afternoon.

It’s a great program.  The School Stream in the morning and actual school in the afternoon are complimentary programs that reinforce each other and allow for a crucial element: the transferrence of skills to different settings.  We are seeing George progress in different ways.  His teacher at school has reported that he is now following school routines with very little problem, and everyone involved with him is seeing a big increase in speech.

The kid’s probably never going to be big conversationalist, but he is at least functionally verbal, and for George that is a step that is big gigantic equivalent to man walking on the moon.  Academically, he is performing so well that his teacher is now describing him as high-functioning.

There are still challenges, and there probably always will be.  George has a resistance to change that is problematic. Picture extreme tearful anxiety when a lightbulb burns out or when the coffee machine is three inches to the left of where it should be.  There are various meltdowns and anxieties that do not make sense (to us; they probably make perfect sense to George).  We would still like to see him talking more, interacting more, coping with sibling rivalry in a way that does not involve him headbutting his little brother.

But as hard as the challenges can be, they are overshadowed by all of the phenomenal accomplishments that we have seen in George, thanks first to IBI, and then to School Stream.

George will be exiting School Stream in August, and from September, he will be spending all of his school time in actual school, and our three-year involvement with the therapy centre will end.

This is causing me a great deal of anxiety.

It’s not that I think George is not ready.  It’s that think I’m not ready.

The therapy centre represents an avenue of support that has been a part of my life for three years.  I have had many, many conversations with the therapists and supervisors there, and they have given me so many great ideas and strategies for dealing with various things.  They have arranged parent education evenings that have given me valuable information and new ways of looking at things.  And to be fair, they don’t just discharge their kids and then forget about them.  They do have a support program that lasts for six months after the transition to full-time school.

But still.  This change, while being necessary and timely, represents a letting go of support.  It’s like finding yourself without training wheels when you still feel unsteady on the bike.

And this Mama just ain’t ready for that.

Filed Under: autism, postaday2011, School, Teacher Tagged With: , , , , , , , ,
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