I hesitate to write this post mostly because someday M may read it. Although, the amount of paperwork or documentation we have around our house that will someday spurn difficult conversations is seemingly endless. For instance, the other day we got a letter from the regional center which clearly stated that M is not “mentally retarded.” This is not news to us.This letter was even based on a terrible evaluation where he refused to do half the tasks requested, he still scored in the average range. Which in my mind means that he could have scored significantly higher and thus is above average. But the tone of the letter was that we had somehow thought he might be, but clearly he is not. Regional Center has a way of insulting you when they send rejection letters. In my interpretation, it reads as, “how dare you waste our time with your clearly not intellectually disabled child?!” G mentioned that we should shred that letter so that someday he doesn’t pick it up and accuse us of thinking he had an intellectual disability. That is just one example from this week. We have piles and piles of documentation from his time in foster care that doesn’t present his life story in the most delicate terms.
That being said, G and I had an exchange last night that is not unlike several we have had in the past. It was related to a post in one of my FASD support groups of a video of a 7 year old boy with FAS whose dad was begging for him to get residential treatment.This idea is terrifying. A kid with a similar diagnosis and similar prenatal history had gotten so violent that his parents wanted to send him away for their own safety. I remember on one of the first days of a FASD parenting class we took, they told us that 95% of kids with FASD also are diagnosed with some mental illness. That is a tough pill to swallow. G is definitely more the optimist. He thinks we are in the 5%. Our boy is so sweet and is so in tune with people’s feelings that there is no way he would turn violent on us. G described it as having a “hot streak” and insisted that it doesn’t do us any good to assume a doom and gloom future. I agree it doesn’t do any good. Somehow, it doesn’t help me to know that this negative way of thinking is destructive. The thoughts will rattle loudly in my mind when I have to restrain my child to keep him from hurting me.
I reflect often on the words of one of our social workers said when M was about 6 months old and she was describing to me what M’s first mom had said about her drug and alcohol use during pregnancy. She told me, “these kids usually don’t show any effects until they get into elementary school.” At 6 months, M was developmentally on target, maybe a smidge behind in gross motor skills. As time has gone on, he continues to slip a bit more behind his peers. His sensory issues and inability to transition already interfere with his ability to participate in normal kid activities. So what about M? He is not a typical one of these kids as we are already seeing significant behavioral concerns. Part of me feels as though we are really in trouble if we are already seeing issues. The other part thinks that early intervention is the key to the best future for M. I have to believe that the work we are doing now is truly helping despite the Regional Center believing that he doesn’t qualify for help.
I once confessed to an Early Head Start home visitor that when other people talk about their little babies and young kids going to college or getting married someday, I just hope that M won’t end up in prison or in a residential facility. Parents with special needs kids love the “Welcome to Holland” analogy.
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
The first time I read it I couldn’t relate. I get why other parents are surprised at Holland when they planned for Italy. But, I SIGNED up for this. I took classes on how to care for drug and alcohol exposed infants and knew the stats about their futures. But now, I get it. The last few lines about seeing everyone else “coming and going from Italy” this is where i struggle too, I am still mourning Holland even though I knowingly and willingly boarded the plane to Italy. I am trying this week to think about the lovely things “about Holland” but its HARD for this pessimist.