Crucial Connection by Rachel Nemhauser

The first time I went out to dinner with a group of parents who have children with disabilities I was actually surprised to notice the moms were smiling and laughing.

After three draining, difficult, traumatizing years of raising Nate I had assumed my days of silliness, fun and friendship were officially over. I imagined my future held only sad, stressful, desperate get-togethers with other sad, stressed out, desperate parents like me. Seeing that I might smile and laugh with friends again - that I could laugh at all with a child with a disability at home – pretty much changed everything.

For three years Nate’s delays had slowly revealed themselves, one after another, like ants from a hill. First he was late to crawl, then to walk, then to talk. His play skills were behind. His adaptive skills weren’t emerging. His behavior and social interactions were challenging. There was no name for what he had and no explanation for his delays so I spent three denial-filled years trying desperately to believe he would catch up. I was not the parent of a child with special needs, I told myself daily. I’m not meant to be this. I don’t want to do this. And since I was determined to not be the parent of a special needs child, it was obvious I didn’t need the support that actual special needs moms needed. I didn’t need to connect with other moms and I didn’t need help because this was temporary.

Except it wasn’t temporary, and Nate never caught up. After three years I finally came to some level of acceptance and admitted to myself that I needed support. Thanks to an invitation from a friend, I decided to attend a Mom’s Night Out with a group of moms of children with disabilities. Expecting a prolonged venting-session complete with whining, tears and miserable desperation, I was surprised to find a group of moms who, like me, were excited to be out to dinner with other grownups! They were cracking jokes, bragging about their kids, and giving advice about behavior problems. They were updating each other on life events, medical procedures and marriage woes. They were recommending good doctors and dentists, and even hairdressers familiar with working with our extra-wiggly kids.

That night I shared the most exciting news in my world: At three years old Nate had recently said “mama” for the first time. To a group of moms of typical kids this is happy news, if not a little surprising. To this group, it was time to celebrate. They understood what “mama” means when you’ve waited three years to hear it. They cheered me on and celebrated Nate’s accomplishments as only they could. In short, they “got it” and it felt so good.

From then on connecting with other parents became crucial for me. I needed to check in regularly with this army of other parents. They were part of my new life and were where I turned to find the support, insight, perspective, acceptance and humor that I couldn’t always get from the rest of the world. I needed to learn from those more experienced than me, and eventually even pass that support on to others.

Today I no longer resent thinking of myself as a parent of a child with a disability. I don’t know if I was meant to do this, but I do know that I can do it. And I’m grateful for those laughing moms from so many years ago who showed me with their smiles that my future would still be joyful and full of laughter.

Rachel is the coordinator of Parent to Parent at the Arc of King County. Parent to Parent helps connect parents to resources, information, and most importantly, other parents. She can be reached at Rnemhauser@arcofkingcounty.org or 206-829-7046 for more information.

Removing Barriers to Learning

Printable Version

Students on the autism spectrum and other disabilities may have barriers to learning that you can help identify through changes in behavior at home. Learn the signs and steps to make sure your child is getting the supports and services needed.

Signs to look for that indicate your child is having trouble learning:

• An escalation of destructive behaviors.
• Suspension from school.
• Extra hours spent helping your child with homework with little or no progress.
• Emotional meltdowns that happen as soon as your child returns home from school.

Document What You See
Any sign that your child is not learning is data that can be gathered to show that your child needs help. The school may say they don’t see these things, but you know your child and what is disrupting his/her ability to learn and participate at school.

Ask for an Evaluation
Evaluations can identify services and accommodations to help your child learn and participate in school. There are many types of evaluations besides an initial evaluation. Here are a few examples of ones to ask for:

• Sensory. Indicators include an increase in challenging behaviors related to the environment (sounds, movement, touch, colors).
• Social Emotional. Indicators include: lack of peer interaction with classmates; lack of understanding social cues; not developing friendships.
• Academic. Indicators include problems with one or more subject areas (math, reading, language arts, etc.)

Evaluations can be requested whenever you see that a disability-related need is not being met or hasn’t had adequate evaluation.

Address Service/Support Needs in the IEP or Section 504 Plan
Based on evaluations and/or your observations, services to ask for may include: speech, language and occupational therapy, physical therapy, counseling services, and transportation.

IDEA AND SECTION 405: CHILD FIND

Child Find requires that school districts locate and serve all children with disabilities in their jurisdiction, under Section 504 of the Rehabilitation Act of 1973 and IDEA. 

IDEA has specific regulations regarding time frames, parental participation, and formal paperwork requirements, including an annual IEP that addresses support and service needs. Students who are not eligible under IDEA may still be eligible for services under Section 504, which has broader eligibility criteria.

Section 504, as with IDEA, grants students the right to a Free and Appropriate Public Education (FAPE). A student does not have to go through a “special education” evaluation process before being referred to Section 504. If a student has a disability which impacts their ability to benefit from or access programs or activities in school, an evaluation under Section 504 must take place. Most districts follow IDEA processes to comply with Section 504, but may have separate timelines and procedures.

IDEA and Section 504 both require educational plans to address a student’s support and service needs.

TO REQUEST AN INITIAL EVALUATION
If you would like your child to be evaluated for special education and/or Section 504, clearly state your concerns and request an evaluation in writing to the school psychologist.

ADDITIONAL RESOURCES
PAVE (Partnerships for Action. Voices for Empowerment.)
Parent to Parent (P2P)
Office of the Education Ombudsman (OEO)

AT&T Connect Ability Challenge

By Connect Ability

Call for Volunteer Feedback

Connect Ability is a three‐month AT&T global design competition for developers to leverage everyday technologies to create mobile and assistive technology solutions for people with disabilities. 

The challenge aims to accelerate innovation of smartphone-­‐based assistive technologies, and rewards developers for engaging people with disabilities to imagine, create and test new solutions. 

To ensure developers address tangible needs, AT&T, together with the ABILITY Lab at New York University, recruited four volunteers to describe on camera their lives with disabilities and their vision for technology solutions— these compelling two-­‐minute stories are directed at an audience of engineers and makers. Please see one for yourself.

Connect Ability’s four NYU volunteers are among several tech-­‐savvy people with disabilities who will host one-­‐on-­‐one virtual and in-­‐person meetings with developers to provide feedback on technological works-­‐in-­‐progress on track to be submitted before the June 24th deadline. These “collaboration sessions” will take place during the first week of June.

Do you know people with disabilities who might be interested in volunteering?

Individuals: 
AT&T and the Connect Ability team will help individuals interested in volunteering use their Skype or phone to meet a developer and provide feedback during a pre-­‐scheduled session. In most cases, developers will describe their ideas or prototype during the collaboration session. Some developers may ship a phone in advance for a volunteer to use an app in real-­‐time or simply email a link for the volunteer to download and test a solution on their own. The collaborations sessions will run approximately 20-­‐minutes and will be facilitated by a Connect Ability competition organizer. AT&T will provide volunteers with orientation prior to meeting.

Groups and team events: 
Organizations home to three or more people with disabilities interested in volunteering to give feedback can contact AT&T about hosting a “collaboration workshop” that consists of a presentation by AT&T on assistive and mobile technologies, and confidential one-­‐on-­‐one break-­‐out sessions with people with disabilities volunteering to give live feedback. Like the individual sessions, feedback will be provided over Skype or phone, and may include prototype technologies provided in advance. AT&T will structure, facilitate and produce group events. 

To learn more, contact Neil Giacobbi, AT&T Executive Director for Public Affairs at or 212-­‐803-­‐2626.