Friday, December 30, 2011

The Difficulties Finding a Good Support Worker or Coach

I started writing this blog in a rage. When I finished my detailed four-page (word document format) rant, I read it through and realized that’s exactly what I had done. Rant. And rants don’t necessarily make good blogs.

While it felt good for me to give a blow-by-blow explanation of why my husband and I decided we have to fire our son’s support worker today, I realized that’s about all it did: help me get something disturbing and sad out of my system and down on paper.

But, as I said, that’s all it did. Though I think dozens of people raising children with special needs would relate to my unhappy situation (if they made it through my dense writing), it wasn’t going to work for a blog. Experience tells me that more often than not, most readers’ eyes begin to glaze over when reading (or listening to!) other people’s angry missives.

So, I’m rewriting this blog entry right now and will try to stick to the salient facts. Wish me good luck.

It has always been difficult to find good support workers (or coaches) for our son with Fetal Alcohol Syndrome. When he was diagnosed with FAS at the age of six, in 1993, few professionals had heard of FAS. Many who did know about it misunderstood the condition completely (“people with FAS have no conscience”; “they’re violent”; “they can’t learn,” etc.).

So when Michael was young, we couldn’t find a support worker who had a good understanding of children with FAS or how to work with them. While we did find caring, sensitive workers, they had no specific training working with people with FAS so they often relied on therapeutic models that didn’t work, such as “Just try harder, Michael.”  Or, “You know you weren’t suppose to do that. So why did you?” Or, “You knew that 2+2= 4 last week. Why do you not know it this week?”  That kind of thing.

People who understand FAS know that many people, including our son with this neurological disorder, have poor executive functioning, bad memories and don’t necessarily understand the consequences of their action. They need external brains.

Back to the support worker. Last year, we hired Bob to work with Michael, now 24. Michael still needs help following routines of daily living and needs to improve skills which will allow him to live what is called “semi-independent living.”  Michael lives in a group home during the week and is home with us on Friday through Sundays. Michael also needs someone he can talk to.  The staff at the group home, while nice, provide minimal support.

Bob came recommended because he had worked with people with FASD before, and when we interviewed him, we were impressed with his knowledge of the disorder.

Once hired, Bob spent several hours twice a week with Michael helping him with daily routines. He took him out grocery shopping, to the library. He helped him on the public transit system and did other things to  get him out into the world. And they talked.

We thought everything was working well with Bob and Michael was content with seeing him several times a week.  Until…

Michael broke a serious rule at his group home a month ago (I don’t feel it fair to Michael to write what it was, but suffice it to say, Michael didn’t harm or affect anyone else).

Needless to say the group home workers as well as my husband and I were deeply upset about what Michael did. We met and tried to come up with appropriate consequences and reinforcements to ensure Michael understood the “wrongness” of his act and wouldn’t repeat it again.

But it’s not easy to teach someone not to do something again, even when they understand it’s wrong, when they act more on impulse rather than reason.

This is where the problem with Bob comes in. Bob decided the best way to reach/teach Michael about this issue was to berate, bully, and verbally bludgeon Michael about his misdeed. He was relentless and wouldn’t give up. He believed he had to “break Michael’s defenses down,” in order for Michael to understand the seriousness of his misconduct. He repeatedly had Michael in tears.

We didn’t know about this until Michael eventually came to us, crying, and explained what was going on. “I don’t think anyone should treat me like that.”  “He asks me questions about what I did that I can’t answer.”  “When someone is that mean to me, I dig in my heels and it makes me want to do the opposite.”  “I don’t want to work with him anymore.”  “He makes me feel bad about myself.”

You would think that would be enough for my husband and I. You’d think we would call Bob and tell him we didn’t think this approach was constructive for Michael or a way to help him learn to control his impulses better.  But we didn’t trust our instincts. Bob was a professional. He came highly recommended. Perhaps he knew something we didn’t. Perhaps we were being unnecessarily protective and defensive of our son.

So, instead, we set up a meeting with Bob for all of us to meet and decide how and if to move forward.

I’ll spare you the details of the meeting, but Bob was belittling to my husband and me (you’re too easy on Michael; you’re pretending there isn’t a problem; you’re letting Michael get away with things).  He bullied Michael when Michael tried to talk (“Speak louder.”  “You can’t just tell me you’re not going to do that again. You have to tell me how you’re going to stop yourself from doing it…”

Bingo. Time to trust my instincts. Too bad I hadn’t earlier.

This guy is a bully. Michael’s not going to learn anything from this guy. He’s going to do the opposite of what Bob says. Plus, our goal is to build Michael up, give him confidence, help him reprogram his brain in a constructive way.

As Michael said, no one should treat Michael like this.

So we’re firing Bob. One problem solved. But there’s always another.

How are we going to find someone (good) to take his place. My husband and I can do only so much. Michael’s not the only one who needs support.

Whew! I did it. The blog is now only two dense pages. Congratulations to any of my blog readers who made it through from beginning to end.

I would love to hear about any of your own experiences  (good or bad) with workers, and what you do to ensure you’ve found the right one.

Or, you might want to share experiences about a time when you did or did not trust your own instincts.

Happy New Year to you all.

Wednesday, December 14, 2011

It’s That Time of Year (as always)

When my son with Fetal Alcohol Spectrum Disorder was growing up, people used to say to me, “I don’t know how you do it.”  I took the expression “do it” to mean raise my son, manage my family and generally, just lead a life and come through it relatively sane.

I had several responses when asked about “doing it.” My answer depended on how that day (month or year) was going. On a bad day, it was, “Quite honestly, I’m not really sure I am doing it.” Another day, feeling a bit more resilient, I’d say, “What exactly are my options?”

Around holiday time, like now, I usually revert back to the “Quite honestly…” response.

I subscribe to many blogs, websites and Facebook pages of parents (and other caregivers) talking about raising children with special needs. Their entries either break my heart, inspire me, teach me or make me ask, with remarkable respect, “How do they do it?” Especially this time of year with so many other demands on their time, energy and financial resources, I am in awe.

My hunch is, though, if asked ‘how do you do it?’ their responses  would probably mimic one of my own.

In the last few days, I’ve read about mothers: living through episodes of their child’s dangerously aggressive and/or dangerous behaviours; rushing their child to a hospital emergency; watching their child go through a surgical procedure; fretting over a daughter’s promiscuity; negotiating with police about their child’s arrest; and begging their child’s principal not to expel him from school.

These mothers amaze me. They express the horrors they are going through, they sometimes question how they will make it through the day (night, week or month), worry about how they’re going to pay for all the therapies their child needs, and often ask for support from other parents who can relate to their experiences.

Yet, considering all their daily troubles, I would say that in virtually every entry I read, the strongest feeling that I pick up from the parent (usually mother) is one of great love for their child (not anger).  And, yes, there’s another prominent feeling: hope – that one-day things will be easier for their child, and therefore, them.

As I enter the frenzied hustle and bustle of getting ready for Chanukah this year,  I think about all the other families raising children with special needs who are preparing for their own Christmases, Kwanza, Diwali, or whatever holiday it is they celebrate during this season. And I ask, with greater poignancy than ever, “How do they do it?”  

How do they buy presents, go to school concerts, trim trees, stuff turkeys or glaze hams, attend religious ceremonies, make sure everyone has proper holiday clothes (or at least clean), roll out cookie dough, send out holiday cards, make merry, look after their families and still do all the unbelievably challenging, enveloping and all-encompassing jobs required to raise a child with special needs (see above).

I don’t know the answer. Perhaps they don’t think they really are doing it all that well. Perhaps they’ve decided to ‘cancel’ the holidays this year and stuff their heads under pillows and hibernate until the season has passed. And maybe ‘they’re doing it all,’ with the same love and devotion in their hearts like they do every other day of the year.

To all these moms, dads, caregivers (and I never forget about the caring professionals), I offer you, with the greatest of respect and admiration, my greatest wish for you this season and beyond ­ – peace.