Friday, April 18, 2014

Same Old, Same Old?

Michael has come far since he was diagnosed with Fetal Alcohol Syndrome when he was six. At that time, the prognosis was grim. Although the clinician at The Hospital for Sick Children was clear that early intervention could make a real difference in his life, the diagnosis was irrefutable – Michael was brain damaged. Research at the time was showing that by their adult years, many people diagnosed with FAS would be living on the streets, be on welfare, in and out of jail, and leading lives of quiet desperation.  Only time wold tell.

Our son is now 26. He lives in a group home during the week and is home with us from Friday through Sunday.  We’re happy to have a break from him during the week, and know it’s important for him to develop some independence, which he can in the the semi-independent living environment at the home.

He has become a sweet, mild-mannered young man, kind of heart.

Michael did drop out of school in Grade 9, as predicted. But last year he started a program here in Toronto at the Centre for Addiction and Mental Health (CAMH) to get his GED (high school equivalency), and goes to classes four days a week. To date, he has had no success holding a job, he has few friends, can not manage money, prefers his own company, and would never do his laundry, shower or clean his room unless forced to.

He has become an excellent woodcarver. Several of his carvings have won awards.

The dire predictions made when he was six never came true, but Michael does not function well in the world. He needs family and professional supports daily.

We love our son, always have, and appreciate the many strides he has made in his life.

But something worries me. Last week, when he was home with us, he stole $20 from my purse to buy cigarettes. This is not the first time, and I’m afraid,  this may not be the last.

We saw him with this pack of cigarettes and couldn’t figure out how he got it. We knew he had no money. When asked about it, he started to lie.  With each word, he was digging himself deeper into the proverbial hole. I walked away. I couldn’t bear hearing him making things worse, adding lying to the list of crimes.

The next day, Michael admitted that he had stole the money.  He saw how upset I was. It was obvious he felt remorse.  His eyes filled up. Unprompted, he said he was sorry. He looked miserable, went to his room and threw himself on the bed. I believe he truly was sorry.

The trouble is, it doesn’t mean that the next time Michael is desperate for something (be it cigarettes, candy, a beer...), he will be able to control his impulses.  One of the characteristics of many people with FAS is poor impulse control, not to mention poor judgement.  It’s the nature of the beast.  He doesn’t stop to think about consequences of his action.  In the heat of the moment, he doesn’t care.

That night, I went online to one of my FASD Facebook support groups. I read messages from parents talking about their children who had stole money, food, and other valuables.  Many said they locked up money and everything else hey could. They hid food. One person put food and money in the trunk of her car. Several parents said it was their duty to not to have anything around to tempt their children.  It wasn’t their fault that they stole. It was part of the FASD package.

The children of these parents were all under 10.

At 26, Michael still has impulse control problems. He smokes too much, eats too much, and would drink too much if he could. He tries to cut down on everything, but it just doesn’t seem possible for him. But I did think he had outgrown stealing. It was a real shock to us that he clearly hadn’t.

Though we understand that people with FASD have particular neurobehavioural problems, my husband and I believe we had to hold Michael accountable for his actions.
Perhaps if the consequences are meaningful enough to him, perhaps, just perhaps, he will be able to control his impulses the next time he wants to steal. We have to do something.

Our decision was to not let him come home to be with us the following two weekends after the incident. Why would we want someone in our house who steals from us, we told him. Why would we want to be with someone we couldn’t trust?

Before he could come back, we asked Michael to write a letter to us explaining what he had done wrong;  why it was wrong; why he wanted us to trust him again; and what he was going to do to earn our trust again. We hoped to encourage him to think hard about his actions and to understand that things would have to change before he would earn our trust again.

He followed through.  He wrote some very thoughtful things, but of course, he’s no dummy. He knows what we want to hear.

Michael  is home this weekend and we can see he’s on his best behaviour.  But the truth is, if the opportunity and impulse arises for him to steal again, I’m not completely sure he won’t just go for it. I’ve hidden my purse.

Sunday, April 13, 2014

If Only (I had dared to reach out...)

One of my neighbours in the small community where I live recently had twin boys. One was born with Down Syndrome. The family has one another child, a three year old son.

After the first few weeks providing casseroles and the requisite good wishes, many members of our community, including myself, let the stay-at-home new mother know that we were available to help, any way we could. Just let us know, we said. Not surprisingly, we never heard from her.

Another neighbour, a specialist in CranioSacral Therapy, was working with the child with DS in the family home, and became aware of the many difficulties the new mum was having coping with the new twins, their three year old, and all the demanding special tasks, appointments and care needed by her special needs son.

This neighbour called around, inviting a group of us mothers to a meeting. Once there, we all agreed to commit one hour, one day a week, to work with Cody, the child with DS. The mom would train us to do a series of physical exercises with him, essential to develop much-needed muscle strength. As we would be doing this in the family home, we might also help with the other children, do light household chores, give mom respite –  whatever we or she thinks needed.

The good will and desire of the neighbourhood moms at this meeting was palpable. We were thrilled to help and be told what specific tasks would be the most useful. WE thanked the appreciative new mum for this opportunity.

As one of the volunteer mothers said in an email after our first meeting:  “I have to admit that I eagerly signed up because I so would like to help out, but after my brief cuddle with Cody, I have now fallen in love.   can't wait to see him again.  And Ben (the twin), what a joyous force he is, toddling around and exploring everything on all 4's.  So wonderful.  And then there's you...gracious and courageous, and willing to receive.  It is a gift for us all.”

This is where my “If Only” comes in.

We adopted our son, our first child, when he was seven days old. Fortunately, I bonded the second I laid eyes on him because he was a difficult baby. I was overwhelmed from Day 1. Both my husband and I were clueless how to bring him comfort during his many crying jags and extended periods of obvious discomfort.  Our pediatrician was as clueless as we were.

I seldom, if ever, reached out for help.

In my gut, I had a feeling there was something actually “wrong” with Michael, but no one, including the doctor had any sense of what that might be. So, since there was nothing “wrong,”  my husband and I could only wonder if we were bad parents.  Perhaps he wasn’t sleeping at nights because we weren’t training him properly. Perhaps he cried so much because we met his cries for a bottle or whatever we thought he needed too quickly.  Maybe he needed a stricter hand.  Child rearing books and several glaring neighbours seemed to think so. Who knew, maybe they were right.

I was embarrassed by my inability to cope and bring comfort to our much-adored, but difficult child.

Michael was diagnosed with Fetal Alcohol Syndrome when he was six. Though the birthmother had told the adoption counselor that she never drank while pregnant, she had clearly lied. “We see it all the time,” said the Director of the Child Development Clinic at the Hospital for Sick Children, where he was diagnosed.

At the recent meeting with my neighbours, I couldn’t help but think about all this.

If only I had reached out to neighbours for help in my own hour of need.  What a smart thing to do. Both my child and I would have been better off for it if I had. As a mother, I was so alone, so in need of a helping hand.

Sadly. I now think that If I had known that there was a reason for Michael’s distress other than “poor parenting”, maybe I would have reached out. But I was so insecure, so unconfident and so afraid of glaring, judgmental eyes, I never made the move. And, as another mother of a child with FAS recently pointed out, our children are not  "cuddly" (the way my neighbour's child with Down Syndrome is),

But really, why did I have to know Michael “had” something (with a name) before I was able to reach out.  We mothers can be so hard on ourselves sometimes, in addition to being insecure.

So please, new mothers of adopted children, or any child, don’t be afraid to ask for help from friends, family, and neighbors if needed.  They may see the request, as one of my neighbours did as  “A gift for all.”

Did you have problems asking for help when your child/children were young?