Helping Your Child With Special Needs To Be Independent

By Lauren Agoratus, MA. Parent, State Coordinator – Family Voices NJ at the Statewide Parent Advocacy Network, Southern Coordinator – Family-to-Family Health Information Center at Statewide Parent Advocacy Network

Families of children with special needs may be overprotective, and often feel justified because of the challenges their children face. But children with special needs need to reach their personal best potential, and should be encouraged to be as independent as possible starting at an early age.

Do start early 

Even a toddler may express a preference about which outfit to wear. If there are homework struggles, ask which subject would they like to do first. Getting input from your child from an early age will help them feel like their opinion counts, and will begin to build their capacity to make decisions for themselves.

Do give your child choices 

Even if your child can’t avoid a situation, giving them choices may help them feel more in control. For example, if your child needs a shot or bloodwork, ask them which arm they want to use. Children should be allowed choices, especially as they get older, with the exception of decisions that significantly impact their safety.

Do remember that transition is more than school-to-work

Your child may need to consider post high school education and ThinkCollege.net has good ideas on college for students with special needs. Your child must also transition their healthcare from pediatric to adult care, so start this early. Your pediatrician may have ideas on which adult healthcare providers would be a good fit for your child. Kids as Self Advocates is a good group for them to join to advocate for their own healthcare. Find them at http://www.fvkasa.org/index.php.

Do help set realistic expectations

Even if your child can’t do exactly what they want to do as a career, there may be a way to adapt it. For example, there was a young student who really wanted to be in the military but physically couldn’t pass the exam. So he ended up working at a recruiting center, still working in the field he wanted. Another young person said they wanted to be a veterinarian. When questioned, it was clear that they wanted to work with animals. So they now work as a pet groomer! Parent Training and Information Centers (PTIs) can teach parents to advocate for their child, and then families can in turn teach their child how to advocate for themselves. You can find the PTI in your state at www.parentcenternetwork.org.

Do teach your child to self-advocate

You child needs to speak up for himself as early as possible. One good first step is having the student prepare a simple one pager for his IEP meeting which could include their strengths, struggles, goals, and what helps them learn. There’s even a Got Transition website for students at http://www.gottransition.org/. Also families can make sure that adults speak to their child, not the parents, especially as he gets older. Older students will have to decide if they need to disclose their disability for accommodations at post secondary education or in the workplace.

Don’t wait until your child is almost an adult

Many things need to be in place by age 18. Does your child need a special needs trust? Is he eligible for SSI? Is he eligible for Medicaid? Start the process of getting these systems in place before he’s an adult. Also, your child should be preparing for transition all along anyway.

Don’t ignore your child’s wishes

Ask yourself if your child wants to go into a certain field or go to college, if that’s your dream for him. If your child has a special interest, perhaps he can get a job in that field. Another example is many students with autism are detail oriented or like the predictability of repetitive tasks such as data entry.

Don’t do things for your child

You shouldn’t do things that your child can do it for himself. Although it may be easier to help a young child get dressed, allowing them to do it for themselves will give them practice at doing it. You may need to allow more time, but let your child do the things for himself that he can. And remember not to speak for your child unless he can’t. Don’t rule out possibilities like work, college, or living independently. Assistive technology, including communication devices, allows students with disabilities to do more for themselves. Technology can help them speak, take notes, organize their schedules, including medication reminders. Ask your child what they want to do as an adult and get services and supports in place such as independent living skills from Centers for Independent Living (CILs). You can find your closest CIL at http://www.ncil.org/. There are also now a wide variety of living options using universal design such as supervised apartments, assisted living, etc.

Summary

Families need to decide how much their child is able to make educational, vocational and medical decisions. Centers for Independent Living help with employment but also financial literacy, transportation, and other life skills. When students learn self advocacy, this will help them live as independently as possible as an adult. For more information or assistance with your child, you can reach out to your state Family to Family Health Information Center (www.familyvoices.org) or PTI (see above).

Original source: Expert Beacon http://expertbeacon.com/encouraging-independence-critical-kids-special-needs/#.UwZUjEYo6M8 

Lauren’s personal link in NJ is http://www.spanadvocacy.org/content/family-family-health-information-center-family-voices-nj 

Family Voices national link http://www.familyvoices.org/states