Challenges when raising someone with FASD

Recently my adult children and I were asked a few questions for a university research project on Fetal Alcohol Spectrum Disorder (FASD) which really got me thinking about how much we have learned over the years.  When my husband and I decided to adopt and we were checking off boxes for what risk factors we were willing to accept we spent hours researching the various potential risks.  I remember reading a lot about FASD and although we learned a lot it didn't really give us a clear idea of what life would be like.  With any diagnosis that's a spectrum it's difficult to truly determine what life will be like for each individual.

I thought I would share some of our responses and hope any of you readers might also share any responses you may have in order to help others considering adoption of someone with FASD.

What are some of the challenges for a family adopting a child with FASD?

I think a huge challenge is the lack of support these children receive throughout their lives from society.  The education system where we live does not fund people with just a FASD diagnosis there needs to be a secondary diagnosis also.  We have adopted 13 children with FASD and all of them have challenges with their learning.  Some have very low IQs, others with low average IQs and a couple with high IQs and all have challenges understanding what is being asked of them and need ongoing support to be successful.  In fact the ones with the highest IQs probably have needed the most support throughout their schooling.

As these children grow another challenge is, frequently they can not be left alone and may still need a "babysitter/daycare" when the parents are out even as teens/adults.  This can be a huge expense and inconvenience for families that many don't think of when adopting that cute toddler.  Different agencies that provide funding for respite frequently don't provide support for individuals with FASD.  Also finding someone to care for your adult child can be extremely difficult because the reasons they cannot be left can be overwhelming to many individuals.  Our 25 year old and 16 year old can be left alone individually for short periods of time, however our 19 and 20 year olds cannot be left and need constant supervision (which can't come from the 25 and 16 year old).

Getting support from medical, mental health and legal systems can also be a challenge.  When and if your child's behaviour gets extreme it can be difficult if not impossible accessing support because the different systems don't really have much to offer, so they give you the run around saying this is a problem for ____ but none have any real options.  If it gets to the unfortunate situation that the child can't live in the home due to extreme behaviours there are also limited options and frequently these adult individuals land up incarcinated or living on the street.

As adults they continue to need support becasue many aren't able to hold down full time employment or live independently.  Some qualify for supports for disabled adults and some don't but the need is still present for many.

There are also the many challenges that each individual family lives with however I feel some of these challenges would be alieviated if the support form society was present.  There is also the moral support that each individual going through these situations needs.  When you adopt and are then going through these challenges you are frequently limited by who you can confinde in - many people won't or can't believe what you are going through. You also have people that say "you adopted them what did you expect?" or they tell you to "give them back".  Sometimes when life is hard you just need someone too listen.

The children were also asked, what are some of the challenges they face living with FASD? (These are answers from some of our children)
Making good choices.  Understanding why something is wrong.  How people expect me to feel/act when I do something wrong.  I am gullible which gets me into trouble with some people. School is my biggest challenge it takes me so long to learn everything and then I forget so much.  Bullying.  Trouble speaking so others understand me.  Anxiety attacks.  Depression.  Not being able to do things that my friends can, all my friends passing me. Getting overwhelmed and having to cut back my activities if I do too much, even though it isn't much compared to my friends/siblings.  Learning is so hard.  Life is hard.

What type of challenges do you experience raising a child with FASD?