SÍNDROME DE DOWN Y AUTISMO: VISIBILIDAD E INVISIBILIDAD. El objetivo del blog es intercambiar información y opiniones con padres de personas con síndrome de Down, con autismo, y en especial con el diagnóstico dual SD/TEA. También me interesa entrar en contacto con profesionales que tienen a su cargo a personas que cuentan con este diagnóstico.
Parents’ greatest worry is what will happen to their children when they are no longer able to watch over and advocate for them. Here are some tips about what you should focus on to assure your children with special needs have the best chance for a happy life after you are gone.
1. Be sure there are people in their life who are not paid to be there. You may be lucky enough to have one or more people who will take up where you leave off. Many people are not as lucky. Start now by developing a formal or informal circle of support for your child. There are specific steps you can take to do this. If you want to know what they are, read my blog entry titled “Who Will Take Over.”
2. Social skills are the most important thing to work on with your child. Many may argue that eliminating problem behaviors or developing effective communication are the most important skills a child can acquire, and I agree that they are critical. Believe it or not, when your child is 40 years old, there are plenty of people (usually staff who work in the field) who will want to spend time with him even if he doesn’t talk and even if he hits them. This is because they have found a way to connect. People fall in love with a personality or a smile or because of the hug they get at the end of the day. Focus your energy on helping your child learn to do things that will connect him to other people. Until they can do this on their own, be sure you have plenty of videos, stories, and “All About Me” books that show others the loveable, quirky, and unique person behind the autism. Lonely people rarely lead happy lives.
3. The more interests they have and things they like to do, the happier they will be. The great thing about a lot of kids and adults with special needs is that they often have passionate interests. Celebrate this—it could become a future career. The fact is that the more things they can do to occupy their own time, the easier it is to be around them. If they are easy to spend time with, more people will want to do this. We are all happiest when we are engaged in something we enjoy. Offer your child hundreds of big and little things to do and hope that a few of these will stick. Make sure EVERYONE knows about their favorite activities.
4. Unless your child can do it on their own, YOU need to make a plan to assure their happy future. Special needs trusts, letters of intent, and futures planning are all great and necessary, but they don’t take the place of a life quality plan. You need to think about each category of life (residential, friendships, recreation, etc.) and write out what you believe they need in these areas in order to be happy. If they are able, your child should help you. If this is too big a job to tackle, you can have someone do it for you. To learn more, go to www.teriinc.org/ialq and click on Life Quality Planning.
5. Help them do things that society values: Unfortunately, despite the fact that we have made some progress, people with significant special needs are still viewed by much of society as folks who aren’t able to make much of a contribution. Prove them wrong. Think beyond recycling and cleaning tables when you are helping your child get ready for adult life. Instead, think, “What does society value?” We value friends (can your child become a “friend” to someone in a nursing home?); community volunteers (can your child be part of the group that volunteers once a month to paint houses for the poor?); members (of a church, synagogue, club, team, or class); home and business owners (Google “Poppin Joes in US World and News Report” for an inspirational story). Start now and keep expanding. Even people with very severe autism can contribute, you just need to get them connected. If you can afford it, get a Special Needs Life Quality Coach to help you.
Here’s a final, bonus tip. Your kids won’t be happy now, or in the future, if YOU are exhausted, broke, and overwhelmed. Step back, get reasonable, and focus on what you need to do (or stop doing) so that you are able to be a parent who has the time and energy to simply enjoy their child, as they are, right now. You are more important to your child’s present and future life quality than any therapy, plan, or treatment.
Dr. Krysti DeZonia is Director of Education, Research, and Life Quality Planning and Support and co-founder of TERI (Training, Education, and Research Institute-www.teriinc.org). She received her Bachelor’s degree in Education and her Master’s Degree in special education from Northern Arizona University and Prescott College. She continued her educational pursuits, earning her Doctorate in Education from the University of California San Diego. “Dr.K.” has over 30 years of experience working with children and adults with a wide range of developmental disabilities and their families, with particular experience with individuals on the autism spectrum.