developmental disabilities

Five Ways of Being Prepared and Informed: The Challenges of Parenting a Child Diagnosed With a Disability

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Image courtesy of Pixabay

By: Emily Graham, Mighty Moms

As an expectant parent, you’re prepared to cope with the expense and physical demands of caring for a child. Planning for what you’ll need to do is part of being a mom or dad, and anticipating the ups and downs is, frankly, part of what makes the experience so memorable and exciting. However, it’s a somewhat different story for parents who find out their child will be born with a developmental or physical disability.

It’s frightening at first, and you may feel alone and isolated, not knowing where to turn for support. But you can rest assured that you are not alone — many people have gone through what you’re experiencing and have raised healthy, happy kids. There’s an abundance of resources, from support groups and individual counseling to detailed classes and instructional materials, to guide you through the early stages of parenting a child diagnosed with a disability.

1) Insurance

It’s important to know to what extent your healthcare insurance will cover the expenses involved in caring for a child diagnosed with a disability. This is especially true for families who need to make frequent use of pediatric care and physical therapy. Some policies will allow adult children to stay with their parents’ plan. So, meet with your provider and make sure you understand the details involved, what’s different about insuring a child diagnosed with a disability, and what benefits are available through the government (Medicare, Social Security, etc.), and what’s involved in continuing the coverage as your child grows older.

2) Preparing Your Home

It’s likely that your home may need some modifications. Some people seek out a house specially constructed for accessibility, while others make modifications themselves. For example, if your child requires a wheelchair, it means you’ll need ramp access if there are stairs leading to your home’s entryway. Smooth transitions from room to room will also be necessary, which can be achieved with small transition ramps. For wheelchair access, hallways should be at least 36 inches wide, and 32 inches for doorways. If you’re not in a position to pay a contractor to widen all the doorways in your home, consider installing expandable hinges or installing pocket doors.

3) A New Home

If you decide the right move is to look for a new home, one better suited to the proper care for your child, you’ll need to do plenty of research. Find out about local schools and whether there are any special education opportunities nearby and what those might be. Are there accessible recreational and educational facilities nearby? The more you can cater to your child’s needs, the easier it’ll be to provide responsive and sensitive care.

4) Bathroom Accessibility

Bathroom access is an important aspect of a properly modified home. A level, roll-in shower is a fairly simple modification, as is the installation of safety grab rails in the shower and alongside the toilet. Sliding cabinet and closet doors in bedrooms, bathrooms, and the kitchen will enhance accessibility considerably. Consider replacing plush carpeting with rubber, skid-resistant flooring. As your child gets older, it may become necessary to move his bedroom to the first floor so they do not have to navigate stairs and can be independent.

5) Other Expenses

Parenting a child diagnosed with a disability means you’ll be faced with expenses for ongoing care as well as day-to-day living. Additional costs may come from prescription medications, mobility-assistive devices (wheelchair, walker, cane, etc.), various therapies-physical, speech, occupational, and behavioral, caregivers, special education supports (see IDEA), and the possibility of medical needs. Have a solid understanding of what you can expect from health insurance and establish a special savings fund for ongoing care and medical expenses. Medicaid can make it easier to cover the cost of care, and SSI provides physical assistance under certain circumstances.

It’s essential to be prepared for the needs of a child diagnosed with a disability and to be armed with as much information as possible concerning care and how to cover expenses. Make sure you’re well-informed concerning health insurance benefits and government programs.

Autism in the Workplace

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The Facts

1 in 68 are diagnosed with an Autism Spectrum Disorder.  

People diagnosed with Autism Spectrum Disorders report difficulties in vocal communication, and difficulties in "typical" social interactions beginning in early childhood (though they can communicate and interact socially individually).

What Can We Do?

For the individuals we support, we have to “think outside the box” as far as developing, and maintaining employment opportunities.  One of the main challenges we see is having companies be open to hiring and supporting adults diagnosed with autism in the workplace.

Over the years, I have gotten to know many individuals diagnosed with autism.  With all, I've seen unique interests and strengths, that could be turned in to employment opportunities, if people were able to think of the possibilities, or how individual skills could fit in to the organizational structure.

Many individuals are directed to specific work, even though it may not be something they are interested in doing.  Often, this can manifest lead to behavior issues, when really it is because the individual is not in an environment that supports them, or provides activities of interest.  The challenge lies in communication, and if communication styles do not match our own, these can be seen as behavior problems.

Ultimately, we need to look at new ways we can support individuals with autism in the workplace, and find ways to support their interests as employment opportunities.

Have a suggestion on how we can support individuals diagnosed with autism in the workplace?  Leave a comment below!

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Teaching Problem Solving Skills to Teenagers

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In 2016, I presented at an ABAI symposium in Chicago.  I was recently going through my old research, and came across this study I completed: "Teaching Problem Solving Skills to Teenagers Diagnosed with Autism," and I thought it would be helpful to share the results, so as to hopefully help parents and educators when targeting skills to teach teenagers diagnosed with developmental disabilities.

"Teaching Problem Solving Skills to Teenagers Diagnosed with Autism"

For many teenagers diagnosed with autism, problem solving can be a complex skill to teach.  Research indicates that using video modeling can be successful when teaching children with autism skills such as reciprocal conversation and play, but few studies address video modeling to teach problem solving skills (Charlop-Christie & Milstein (1989) ; Charlop, etc. al. (2000)).  Bellini and Akullian (2007) completed meta-analysis of video modeling studies, finding many studies supported video modeling.

During the intervention phases, video modeling was introduced for each step of a problem solving task analysis in using the phone to call a parent for help, then faded as participants demonstrated the skill independently. We then focused on generalization of skills from direct instruction, in contrived scenarios with parent participation, throughout the participants’ day where they would need to call their parent for help.  

For all participants, maintenance probes were completed one year after the initial training.  Following intervention, all three participants completed 100% of the problem solving task analysis independently.  One year later, two out of three participants maintained the skill at 100% of the task analysis. 

Results:

 

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For additional strategies on teaching transition skills to students, please see our eWorkbook: Transition to Adulthood Series: Supports and Services!

 

References

•Charlop, M. H., & Milstein, J. P. (1989). Teaching autistic children conversational speech using video modeling. Journal of Applied Behavior Analysis, 22, 275–285

•Charlop, M.H., Le, L., & Freeman, K. (2000). A comparison of video modeling with in vivo modeling for teaching children with autism.  Journal of Autism and Developmental Disorders, 30(6), 537-552

•Bellini, S., & Akullian, J (2007). A meta-analysis of video modeling and video self-modeling interventions for children and adolescents with autism spectrum disorders . Exceptional Children, 73, 261-284

•Collins, S., Higbee, T., & Salzberg, C. (2009). The effects of video modeling on staff implementation of a problem solving intervention with adults with developmental disabilities.  Journal of Applied Behavior Analysis, 42(2), 849-854

 

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