While parents in general might spend time worrying about what their child’s college major will be, parents of children with autism and other differences are focused on where and how their children are going to live. Today, there are a greater number of students living with significant disabilities and residing at home with their families due to the lack of residential as well as employment opportunities after they complete school.
There are a few leaders forging ahead, trying to create ranches, villages, and apartment complexes to support the ever-growing need, but not enough to address the hundreds of thousands of adults needing a more supported living environment. Most projects have been spearheaded by parents; many support those with milder living challenges, and most have no space left.
So, what can parents do?
- Connect with local parent groups. For those based in the U.S., there is Matrix, the Autism Society of America, Autism Speaks, and others. Find out what innovative residential projects they may be developing. Join meetings now. Take a leadership role
- Lay a foundation. Every building needs a strong foundation. Be the architect of your son/daughter’s living plan. Don’t wait to hear: “Well, he/she is not developmentally ready to learn that.” Begin to nurture independence from the very start
- Let your child help you dress himself/herself. Allow him/her to put the clothes in the laundry hamper. Let him/her carry the hamper to the laundry room. Later, he/she can sort light and dark clothes. Let him/her begin to pick out his/her own clothing. Let him/her put the clothing away after it has been washed. Teach to fold and hang
- Teach your child to strip and make the bed. To start, he/she can take pillows off and throw them back on the bed later. Then he/she can gradually learn more tasks
- Encourage your child to set the table, take finished dishes to the sink and scrape, and rinse and load the dishwasher
- Take him/her shopping with you and give him/her one, then two, and finally five items to find in the store. Let your child put food and supplies away, so he/she knows where they can be found. Eventually, your child needs to make the shopping list, find all items, and go through check out. Menu planning proceeds after the shopping. Then he/she can participate in cooking
- When a light bulb goes out, have your child go through the steps with you of replacing the bulb (unplug, twist out bulb, find new one, twist in, plug)
- Make sure he/she participates in getting ready to bathe or shower. Put a checklist up with all the steps for washing and rinsing bodies. Don’t make him/her depend upon your physical or verbal help as he/she grows older. If he/she can see the steps to follow, he/she can become independent
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Becoming your child’s architect
Laying a strong foundation means your child will have better choices when the time comes to look at the living programs available. Of course, once the foundation is laid, every builder needs a team to ensure the house is built strong and in time. So, as the architect, you will need to build that team. Here are some tips…
- It starts with early learning opportunities for your son or daughter. It then means working with your school district to design meaningful individual education and transition plans. Make sure the goals truly help develop independence. Schools need to address more than academics and communication skills. There should be goals in the areas of vocational exploration, community access and integration, hygiene, skills of daily living, hobby development, social skills development, leadership, and problem solving. It could mean obtaining outside additional support from speech therapists, occupational therapists, behavior specialists, social skills workshops, or animal companions. You will want to put on your detective hat and identify all of the strengths and interests of your child, and add that art therapist, music therapist, or exercise specialist to the foundation-building team
- Be aware of your child’s curiosity, as curiosity leads to interest development, which leads to motivations for learning, engaging in social groups, and finding sustainable employment and living partners
- Explore camp opportunities, first day camps, and then overnight. This step begins to prepare you as a parent to let go, and it helps your child develop courage, deal with change, and acquire some resiliency. Boy and Girl Scouts groups are very inclusive of those on the spectrum and teach leadership skills, social skills, problem solving, and build engagement with special interests
- Address your kid’s anxieties. These could be sensory sensitivities or fears due to lack of comprehension, flexibility, or seeing more than one solution. Modified cognitive behavioral therapy could work. So, you may need to add that experienced and knowledgeable psychologist or counselor on your construction team. Different living situations present different kinds of experiences, and so addressing anxieties will be very important
- Addressing your child’s growing up will also be part of the plan. Check out Carol Gray’s social stories to teach about puberty or access the Autism Speaks tool
- Don’t forget to determine if a Special Needs Trust can help put the right kind of roof on
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Once you, as the architect, has laid out the components of the design, gathered the construction team, and begun coaching and cheering your son or daughter in acquiring independence, you can begin to engage with other families and organizations creating living opportunities, for it will not happen unless your voice is loud and you are willing to lead or support in building a long term home for your child.
So, get some drafting paper and a tool belt and visualize a safe, supportive home where your son/daughter will execute all those skills of independence you have nurtured. Stay alert on legislation supporting affordable housing development. Vote for it. Lay a strong foundation so a house can be built that supports your child, teen, or adult.
This article was featured in Issue 113 – Transitioning to Adulthood