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As a child with FASD grows into adulthood, he and his family face a whole new set of challenges. As a society, we tend to associate “growing up” with more freedom and independence, and less supervision from parents. As young adults, we look forward to moving into our own place and living according to our own rules.
But freedom isn’t really free. The price of independence is responsibility. Living on your own means buying groceries, managing a budget, holding down a job. These kinds of responsibilities can be very challenging for adolescents and adults with FASD.
When their children are young, parents are able to provide the highly structured environments people with FASD need to function best. But as their children mature, parents are no longer able to provide that level of supervision. Getting to work on time, paying rent and making friendships with good, honest people can all present significant problems to a person with FASD. And for parents, these problems are very much on their minds as they try and figure out how their children will manage when they are no longer able to keep an eye on them.
But there are ways to prepare your child for life in “the real world.” In the next section, we’ll show you how.
Preparation can help you assist your child in the transition into “the real world.” Here’s some advice from parents.
- Meet your child on his level.
The fact that your child is an adult doesn’t mean that he no longer needs your help and supervision. Continue to attend appointments with him – even job interviews if necessary. Have your child sign release forms so that you can be included and informed in all aspects of his life.
- Engage your child in decision-making.
Talk to your child about any decisions or processes that affect her. Seek her input and respect her views. Offer her options to choose from, and assist her in making decisions.
- Involve others in your child’s life.
A partner, spouse, roommate or friend can all support you and your child. Ask them to take on duties such as teaching and mentoring life skills, helping with job searches, basic hygiene instruction and reminders, money management, and wake up calls.
- Find a surrogate parent or guardian.
Finding a good person and training him or her far in advance will help you and your child feel more comfortable about her future as you approach old age.
- Help your child explain FASD to others.
In our Resources section you’ll find a listing of books and website your son or daughter can use to explain FASD to the people in their lives. You can try making a card for your child that has your contact information and details about his disability.
- Make a will or trust fund.
This ensures that your child’s best interests are served even if you’re not in the position to see to it personally. An in vivo trust is established for when you are still alive, while a will is administered after you have passed away.
- Help your child manage her money.
Set up a system so that you can manage your son’s earnings, and ensure that his bills are paid. Ask him to sign a release so that you can become his trustee. Find someone both you and your son trust and train that person to assist your child in money management. Approach local groups for people with disabilities – they can help your child apply for a disability tax credit or set up a disability pension.
- Buy a “call me card.”
Your child can use this to contact you if she runs out of money and is away from home.
- Explore possible living arrangements with your child.
There is a range of choices: living at home or with a partner or spouse; living with a roommate or more formal assisted living situations; treatment facilities or even independent living. Experiment and find out which works best. Expect your child to become independent later than most.
- Connect your child with employment agencies for people with disabilities.
A local disability network or agency for community living may have a list of “friendly” employers. Once your child has a job, he will need help keeping it. Review his schedule, role-play his duties, and check in frequently.
- Talk to your child about reproductive health.
This includes providing your child with information about birth control, and suggesting preventative measures such as Hepatitis B shots. You may choose to provide your child with condoms or alternate forms of birth control. If your child is already a parent, take an active role in your grandchild’s life, and support them both as much as possible.
“As the parent of a young adult with FASD, you need to fight everyday for him to get what he needs to have a good life. Be strong. Don't give up.”
“Just because these children can start to thrive in the right environment doesn't mean that we stop supporting them. This is a lifetime disability, which will surface again if not consistently supported.”
“My daughter has had a couple of mentors that have been wonderful. I want to be her mom, friend, and grandma to her daughter. But I think parents need to be able to let other people have some of that role.”
“I think some of the most challenging things are reminding yourself on a daily basis that you’re dealing with brain differences, you are dealing with a child who’s developmentally not as old as they are chronologically. You need to be able to provide the level of supervision that is needed without taking away everything that could be fun in their life.”
“I can remember many, many times having the money to go buy groceries, but not having a ride so I just order take out. Then the money for groceries is used up. Or I forget to buy the bus pass. It would be good to have a sponsor who could take that out of my cheque and send me the bus pass. They could pay my bills in case I forget.” (Adult with FASD)
Next: Connecting With Others
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