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10 Tips for Navigating our Journey

Let’s face it, raising children is difficult. And, raising special needs kiddos can feel impossible at times. When my son was very young, I frequently felt overwhelmed with it all. We had lots of medical appointments, therapy sessions, therapy homework, and behavioral outbursts to manage. We were entering a new world, the disability world, and we knew nothing about it. Everything seemed foreign to us: the words, the acronyms, the medical professionals, the special education process, and the support agencies. I knew we needed assistance, but it seemed so hard to access.

Over the past 26 years, there have been a lot of trials and errors. Somewhere along the way, I became more confident in my role as a mom and as an advocate, and it all seemed so much easier to manage. I think part of the reason that things got easier for me is that I stopped looking for the quick fix. I focused my energies differently. I developed my own system: 10 Tips for Navigating our Journey. I wanted to share these tips with other parents in hopes of making their journeys a little smoother. These tips can work as you support your child at any age.

Use your child’s evaluations/assessments as the roadmap

  1. Every 3-5 years, consider getting an updated assessment for your child. For children who have special education services in public school, remember they are entitled to an assessment at least every three years.
  2. The professionals doing the assessment will evaluate your child’s strengths and challenges.
  3. Typically, the assessment report includes a recommendation section, which can help your family prioritize your next steps.
  4. As you contact other agencies and people for assistance, share the assessment report strengths, challenges, and recommendations. This detailed information may bring better results than sharing just a label or diagnosis. Keep in mind that every child with autism has different strengths, challenges, and needs.

Get organized; our children generate a lot of paperwork

  1. Save and file assessment reports, annual IEPs, public school special education forms, and government paperwork. Be prepared to share these documents with others.
  2. Consider creating a Care Notebook – or at least a summary sheet – that includes medical team information, strengths, challenges, therapies, services, medications, and when developmental milestones were reached.
  3. Families interact with lots of people and agencies. Create a phone/contact log. In this log, document the agency you called/emailed, a contact person, direct number or email address to the contact, the reason for the call/email, what the person will be doing to support you, and the date that they will follow up with you. Mark your calendar if there is a due date and then reconnect with them if you haven’t heard back.

Create structure for your child

  1. Use visuals supports.
  2. Develop routines.
  3. People with autism often experience anxiety when they aren’t sure of the expectations. Consider using sequencing cards, a visual schedule, or social stories to help the individual understand what is going to be happening.

Keep in mind that this journey is a marathon and not a sprint; pace yourself

  1. Create a to-do list related to your child’s needs.
  2. Prioritize the list.
  3. Focus on only your top 3-5 items on the list.
  4. When you complete those, then select your next 3-5 top items.
  5. Slowly but surely, you will accomplish your to-do list.
  6. If you work on too many to-do items at once, it is likely you will get overwhelmed and have a difficult time checking anything off the list.

Learn more about topics related to your child’s assessment report, the diagnosis, and disability supports

  1. Discuss topics with your child’s doctor and/or medical team. These professionals are valuable assets to you. Ask them questions.
  2. Connect with advocacy groups, like the Autism Society of North Carolina (ASNC), for guidance and support. ASNC has 18 Autism Resource Specialists around the state who assist families with community resources and referrals, provide educational workshops, and spend time listening to families.
  3. Read books specific to autism. Some of my favorite authors are Jed Baker, Michelle Garcia Winner, and Ellen Notbohm.
  4. Connect and learn from other parents through ASNC Chapters or other support groups. There are more than 65,000 families in NC with a family member on the spectrum, and these groups can be a great way to exchange information.
  5. Participate in disability group information sessions. Here are a few examples of how ASNC provides educational opportunities to families: workshops, online webinars, blog posts, conferences.

Set clear expectations and goals for yourself and those that you connect with for support

When you reach out for support from an agency or person, be ready to share with them what it is you need or are working toward. Examples:

  1. My child was recently diagnosed with autism. The assessment report said to call ASNC. Could you share with me how ASNC supports newly diagnosed families?
  2. My child has autism and the top three needs of our family are connecting to public school, learning about the IEP process, and connecting to support groups. Are these things that your organization can help us with?
  3. I am not sure what we need, but our biggest challenge is behavioral issues. Can someone within your organization provide us with options to consider for next steps?

Seek support for yourself

  1. ASNC Chapters or support groups from other disability groups
  2. Individual or group counseling
  3. Natural supports such as friends, family members, and neighbors. If a natural support isn’t providing you with the positive assistance you need, then use the other options.

Identify people and agencies that are positive supports to you and your family

  1. Over the years, I have reached out to lots of local agencies for support. When an agency has provided me with useful information, I make note of that. The next time I need assistance, I reconnect with the same agency.
  2. When you find a person or agency that makes a positive difference in your life, thank them.

Make time in your schedule for yourself

  1. Self-care is a priority and not a luxury.
  2. If we spend all our waking hours supporting someone else, we can get burned out quickly.
  3. Include activities in your life that are fun and fulfilling to you. These activities can help to recharge you.

Enjoy the journey. As Ralph Waldo Emerson said, “Life is a journey, not a destination.”

 

Nancy LaCross, an ASNC Autism Resource Specialist in the Raleigh area, can be contacted at nlacross@autismsociety-nc.org or 919-865-5093.

 

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