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Saturday, February 5, 2011

It's forever

After attending a FASD (Fetal Alcohol Spectrum Disorder) workshop I raced home to take our children out walking through the trails of our local river. It was refreshing listening to the river roar, walking the misted trails during this warmer February day. I became deep in thought thinking about how to be a better parent to our children affected by this often hidden disability. Nine of our children are either diagnosed or suspected FASD. Living with FAS (Fetal Alcohol Syndrome) on a daily basis is definitely a different lifestyle then the ordinary "typical" family. I always state with structure, daily routines and repetition life moves without chaos. Not flawless. Being a Mother of many brain damaged children is not an easy task to learn. I'm constantly searching for different approaches that might provide a better outcome behaviourally but ultimately when we awake; we awake starting over every day. This is a commitment. I've spoken on several adoption panels to individuals that want to adopt and my concern is do they understand the impact of FASD? Other special needs? My husband and I already had birth children before adopting, adopting for us wasn't because we needed children. We wanted to parent unconditionally, to provide a forever home and within our capabilities be parents to as many special needs children as we could handle. This is where OUR hearts are, here with our children. As time moves on, we are learning so much more. Just as adopting a child is a process, so is parenting after adoption. I worry about some potential adoptive parents, especially when they're adopting a child/children at a young age and they have high expectations for this perfect child; then the child ages, signs of undiagnosed special needs surface and adoption breakdowns occur. Anytime when someone questions me about adopting, I always, always need to be straight forward about the commitments. We all love cute, happy, cuddly little children but little children grow and develop needs that perhaps wasn't written, wasn't diagnosed nor something that adoptive parent "wanted" to parent like FASD. During our adoptions we jumped right into FASD, RAD (Reactive Attachment Disorder) NAS (Neonatal Abstinence Syndrome) meaning prenatally exposed to other substances, Chromosomal Disorders , ADHD (Attention deficit Hyperactivity Disorder) OCD (Obsessive Compulsive Disorder) Sensory issues, you name it, we have it. Not to mention mostly older adoptions. We knew, we know the dedication that needs to remain so our children can grow up hopefully with a sense of healthy attachment, a family and to feel unconditionally loved no matter what the hidden disability they might have or acquire with age. For me what's frustrating is the public school system and the different professionals that don't understand or acknowledge our children affected with FAS. I don't blame anyone for the lack of education they receive but what's maddening is I don't feel listened too while explaining how to deal with our children. Our children learn differently. So our expectations are limited accordingly to each of our children. A key point I learned years ago that helped us is to give up on trying to get our children to do what they can't do, they might not ever understand. We're all individual learners. For us living with FASD we witness on a daily basis the challenges our children face and as much as we see their brain damage to be behavioral, it's not. A few years back we decided to change our approach by trying to be preventative. For example some of our children truly believe that "borrowing" because we're family is not stealing. It didn't matter how much we explained that if you don't ask, it's stealing. So we eliminated this situation at home by simply locking our bedroom door, locking the pantry and medicine cabinet. We're always thinking about situations that we can prevent. Another example is having their own "spots" at the dinner table, in our vehicles and yes, sometimes in the living room while having a movie night. Avoiding the argument and the confusion is helping all of us eliminate possible issues that have or could arise. I always write or explain to people we work as a large family because of the structure, the routines, the supervision and complete consistency we've developed through-out our years of being adoptive parents. I can not stress enough this is true not only for having a larger family but for having children with special needs. There is no leniency. Bedtime is at the same time every night. If we slip, it opens us up to an argument for the next evening. Even myself loves routine. I have a certain way to buy groceries, usually I head to the same area to park my vehicle, dinner is always at a certain time, usually Mondays are baking days. I structure my time around my routine and our children learn this too because it's repetitive, like their bedtimes. Our brains work best with consistency. Honestly I'm not reading this and believing it's true from a word, we live this way and it's completely factual. In conclusion, if you want to adopt or are thinking about a larger family, these skills are detrimental to have. Adoption is just not that cute child, that cuddly baby, it's a lifetime of commitment with unexpected developing needs you'll have to accept forever. Having realistic expectations and learning to have a sense of humor while possibly dealing with a crisis will help yourself as their parent. It's definitely not as easy as I write because I need to be aware every day, all day long on how I'm going to react as their Mother without internalizing the circumstance within myself. People wonder if my husband and I are on a drug because we present ourselves very calm. Don't get me wrong, we have our moments. Usually our moments are with releasing our frustrations onto supportive friends and within our adoptive community that understand but mostly we've incorporated all the key elements I've written above. In the end having children with FASD and other different special needs life works by developing the structure, routine, consistency, supervision, having patience and most importantly a sense of humor on a daily basis. That's how we do it and you can too if you're willing to commit. A question you can only answer for yourself before leaping into adoption because once committed, you can't quit on your child or children. It's forever.

1 comment:

  1. Amen! We were those adoptive parents that knew we couldn't parent a child with FAS but could parent a child with FAE. We didn't get FAE but FAS. We have found that through love, patience, education, trial by fire, routine and a huge sense of humour that we can and do and are seeking, more children with FASD, that we are all about loving these kids forever.

    It's a lifetime committment and beyond.
    Looking after the support group I do, I'm always concerned about our new adoptive parents who've said yes to FASD, and do they truly understand the disorder. It's a big focus in our group to help these newcomers get a good knowledge base of what they are setting themselves up for.

    I believe it takes special people to raise and love these people beyond the cute and cuddly stage of babyhood.

    Thanks for being a great example of a special needs parent/family.