Hi hopefuladopter, congratulations on getting to this stage. Considering matches is exciting but also so much to weigh up and consider. FASD is a spectrum condition and kids can be affected in lots of ways along a continuum. Alcohol can also impact on physical development as well as brain development. Other drugs can play a part and there is some research coming out on cannabis exposure in utero may cause problems similar to FASD.
Parenting a child with a FASD. Where do I start. I think recognition of any pre-natal alcohol exposure is a good place to start. Having it clearly documented is very important for any diagnosis. Lots of kids are exposed to alcohol but it has not been documented. Lots of kids may get misdiagnosed with ADHD. Only 1 in 10 will have facial features of FASD. We recognised fairly quickly that there were additional issues after placement (we adopted a slightly older child).
For us, getting the alcohol exposure risk recognised was a struggle as it was not properly documented. One this was recognised, diagnosed and we started using the correct supports and strategies things got much easier. Typically kids with FASD are emotionally about half their chronological age. So we have a wonderful 8 year old who is emotionally 4-5. He has a 'spiky profile' and has strengths in some areas and difficulties in others. He has significant sensory processing issues, social communication challenges and struggles in noisy busy environments. He also gets tired very quickly as his brain has to work extra hard to do things we all take for granted. But he is a wonderful loving boy.He is brilliant with lego and puzzles, computers, loves animals. We have had to adapt family life significantly. We have applied for an EHCP and are looking for an education provision that can meet his needs. But we are doing well as a family and are hopeful for the future. ☺
Historically good support and diagnosis has been a postcode lottery. We have an excellent paediatrician with fasd awareness. Things are changing thankfully. There is increased recognition of the needs of those with FASD. Scotland has a care pathway in place for diagnosis and support. England is further behind but there are pockets of good practice and more professionals getting training.
In terms of the future, adults with FASD often need support. I have read stories of adults with FASD who have managed to go to university and then those that require very intensive support to function on a day to day basis. Take a look at resources online from Myles Himmelreich and RJ Formanek, two adults with FASD with blogs/ on YouTube. Have a look at a resource list I posted above.
I don't have any regrets. My boy is an amazing individual who still manages to smile through the challenges. Lots for you to consider. I know lots of families struggle and can only give my own experience. If there is anything else I can do to help please let me know!