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A New Year: Time to Plan

This article was contributed by Jan Combs, an ASNC Autism Resource Specialist and mom to a son with autism.

new year start

Happy New Year to everyone!

Whew! I love the holidays. It’s a time to look back at the past year and gratefully reflect on all the blessings in our lives. When the flurry of activities is over, it’s a wonderful time to slow down and reconnect with friends and family.

As the last of the holiday decorations and trimmings are returned to the attic, let me encourage you to spend some time looking forward: looking at those key areas, making goals, and getting organized. For some, school is half over. For others, you may be looking to bridge that gap between home and community. A new year brings the opportunity for a fresh start, a time to make new resolutions.

Long ago, my husband and I would set aside a weekend to plan our next year’s goals, marking off blocks on our calendars for special times. Since the kids came along – and the usual work, health, and life issues – we now attempt to grab whatever few precious minutes we can to pray together and talk about what we want to accomplish as a family.

Since my youngest son, Daniel, was diagnosed with autism in 1995 at 3-1/2 years old, our family goals have certainly changed. Our joint efforts at communication and planning have become much more essential. These efforts have not always happened as often and in the manner I would prefer. Indeed, it has not always been easy. But it is always well worth every attempt to help focus us on the needs of the family and on each individual. Let me tell you, planned “spontaneity” takes quite a lot of effort! Yet I have found that the time spent educating myself, planning as best I could, and preparing as thoroughly as possible before a crisis has all been far easier than those days of putting out “fires” from lack of preparation and hoping for the best.

Here, then, are my Top Ten “Things I Wish I had Known to Plan for When My Child was Younger”:

1. Teach your child

  1. How to use a schedule: Many studies have shown that using schedules can produce a dramatic decrease in negative behaviors for individuals with Autism Spectrum Disorder (ASD).
  2. Resiliency and adaptability: Talk with your child about when you encountered setbacks or disappointments or things did not go as planned. Model how best to handle these situations. Use social stories or scripts, e.g. “Go with the flow,” or “This is difficult, but I can make it.”
  3. “Please” and “thank you”: These simple, almost magical, words are the gateway into polite society. The reality of human nature is that folks are more willing to do something for someone and go the extra mile if their efforts are noticed and appreciated. An important, but often overlooked, fact: your child will grow up and become an adult, and adulthood will last far longer than childhood. Basic good manners are an important people skill set that strongly determine how your child will get along with and be perceived by others.
  4. Personal responsibility:
    1. Assign chores appropriate for your child’s developmental age.
    2. Let children know they are helping the family – and that it’s important.
    3. Provide opportunities for your child to experience the satisfaction of accomplishment.

2. Evaluate needs

The manner in which services and resources are provided or funded are constantly changing in this state. It can be difficult at times to determine which services are the most appropriate for your child.

  1. Just know you will never have all the information before you have to make certain choices for your child.
  2. Make the best decision possible with the information you have at hand. Then move forward.
  3. Don’t feel guilty if things don’t work perfectly. There are no perfect programs/services that will address all of your family and child’s needs. Your child’s needs are unique; there is no single expert to consult with who will have all of the answers for your child’s future.
  4. Learn to be confident in your skills as parent/teacher/advocate for your child:
    1. Be confident when dealing with confrontation
    2. Be assertive rather than aggressive
    3. Especially learn the art of negotiating
  5. Learn how the process/procedures/rules work as best you can: Stay informed and keep up with any updates. The Autism Society of North Carolina (ASNC) can help:
    1. Check out our website, www.autismsociety-nc.org, for information, toolkits, and contact information. See our calendar for upcoming trainings, workshops, webinars, and events
    2. We offer a free email newsletter, a twice-yearly magazine, and email alerts. We are also on social media. Learn more here.
    3. If you need more resources or information about an issue, contact your local Autism Resource Specialist.
    4. Check out our Navigating Services workshop; see the workshop schedule here.
    5. Educate yourself about Autism Spectrum Disorder (ASD) and share your knowledge with others.
    6. Tell our legislators how ASD affects your child and family. Click here to learn where to start.

3. Plan for summer camp

  1. Consider Camp Royall. Our application process for Summer Camp is open from mid-January to mid-February. We also have year-round events for individuals and families.
  2. Summer Camps/Recreational and Leisure Activities: Consider options and start planning soon. Registration usually opens in early spring; popular programs tend to fill up quickly.

4. Check in with your managed-care organization (MCO)

  1. Have you been in contact with your MCO yet? They are the gateway to many services if your child is deemed qualified.
  2. Do they have your correct contact information? If your child qualified and previously was signed up for the NC Innovation waiver wait list, then verify (annually) that your child is still listed. When slots open up for the NC Innovation waiver – and your child has been waiting, perhaps for years – it’s important to make sure the MCO has your most current contact information.

 5. For school-age children

  1. For young children: Work on skills needed for entering preschool or kindergarten.
  2. Student with an IEP: How does your child’s progress line up with listed IEP goals? Any changes needed? Any added support needed? Need help? If so, please give one of the Autism Resource Specialists a call – we are available to parents across the state in every county. We also have an IEP Toolkit.
    1. Evaluate whether you need additional IEP meetings to address your concerns.
    2. Be sure to prepare for the upcoming IEP annual meeting. Consider scheduling before the end of May/early June to have enough time for additional IEP meetings, if needed, before school staff leave at the end of the term.
  3. Child with an EOG:
    1. If anxious, teach and practice calming strategies.
    2. Teach test strategies.
  4. Transition planning can start as early as age 14.
    1. Transition planning should be more than checking boxes on a checklist. For more information, click here.
    2. Include your child as much as possible.
    3. Work with your IEP team to bring in experts before graduation and plan for life after high school.
    4. Whether your child graduates at age 18 or 22, check out graduation requirements. Is your child on track to complete all of them in the required time?
    5. For parents: Where are you on the “letting go” scale?
      1. Independence for your child, at whatever level it can be accomplished, is healthy and desired.
      2. Are you ready for what all this means for your child maturing into adulthood?
      3. Consider financial management, residential options, employment, independent living skills, and educational opportunities: Does your child have the tools, skills, and ability to be successful in these areas? If not, what necessary supports and services does your child need?
  5. High school and after: Does your child need job skills?
    1. Let me suggest Project SEE through the ARC of Wake County. It is a supported employment opportunity for high school students with special needs.
    2. Don’t have such a program in your area? Look for other opportunities to build experience and skills with internships and volunteer opportunities. Plan for and get ahead of the summer crush of applications.
    3. Consider our JobTIPS program.
    4. Consider asking someone you trust to step up and be a mentor for your child.
      1. Employment Supports Services available: See our website for more information.

6. Write a Letter of Intent and plan for the future

  1. No matter how old your child is, do you have a will? A special needs trust? Have you made those very necessary and important preparations for the future?
  2. Once your child turns 18 in NC, he/she is recognized as an adult, legally competent to make all their life decisions.
    1. Guardianship is not appropriate for everyone. If needed, you can begin the guardianship process when your child reaches the age of 17-1/2 years. When is it necessary? Who needs it? Check our schedule for upcoming workshops.
    2. Determine whether guardianship, or an alternative to guardianship, may be the best fit for your child.
    3. This can be a tough decision and an emotional one, for some. Remember first to assess realistically your child’s understanding, ability, strengths, and challenges. Factor in the possibility that (at some future date) you might not be around to provide support and assistance. Educate yourself on available options and decide what is best for your child.
  3. Whether you have a minor child or one about to enter adulthood, a letter of intent is essential:
    1. It is not a legal document, but can be written in such a way as to smooth the transition for the continuation of care for your child in case of tragedy or if you are no longer able to care for your child.
    2. A letter of intent can be written (or you can fill out a downloaded template) that may cover essential areas for your child:
      1. Daily schedule
      2. Strengths and challenges
      3. Medical issues
      4. Dietary issues (if any)
      5. Describe what you would like to continue for your child: holiday traditions? Family connections?
      6. Your future vision for your child, and much more
    3. Be sure to update your letter of intent, either annually or when your family situation changes because of divorce, adoption, financial changes, etc. Update and address changes as your child matures to adjust for changing levels of skill and function.

7. Assess safety

  1. Talk/model/practice with your child.
  2. Make it appropriate as per their understanding and developmental age.
  3. Calling 911: Teach your child when it is appropriate (and when not) to call.
    1. Teach your child not to hang up after they have called 911 until instructed by the operator to do so. Even if you dial 911 accidentally, if you hang up and the operator cannot contact you back immediately, then a police officer will be sent out to check on you. Stay on the line long enough to confirm the mistake and that you are not having an emergency.
    2. Post near your phone, or in an assigned spot, your home address and detailed instructions for calling 911.
  4. Fire protection and train and bus safety programs are also important: My son takes a martial arts class. During one of his class warm-up exercises last year, his instructor requested the students to drop and roll. Only one student knew how to comply. My son was not that student. My shock was all the greater because we had – I thought – fully “discussed” the concept of “Stop, drop, and roll.” He could easily answer the question, “Daniel, what do you do if you catch fire?” He still could answer verbally – he just couldn’t physically do it when it mattered. Lesson learned: make sure to reinforce your instructions. Do not assume. First explain in appropriate details, but be sure to model it and practice, practice, practice.
  5. Don’t forget to consider these other safety concerns:
    1. ID theft
    2. Computer/Internet/social media
    3. Sex education:
      1. Teach actual names of body parts.
      2. Discuss good touch vs. bad touch.
      3. Discuss appropriate social behaviors.
      4. Discuss to whom it is appropriate to disclose personal or family matters as well as when and to whom it is not appropriate.
      5. What values do you wish to pass on to your child? If you don’t discuss, others will.
      6. Help your child understand it is okay to say NO – and loudly – to someone who is not appropriate with them, wherever they may be. Practice this. Let them know it is okay to make a scene, when necessary, if they feel threatened.
      7. Discuss how – and to whom – to report an incident of abuse.
    4. Planning for vacation/trips. See our training department for tips for travel on planes, etc.
    5. See the ASNC Bookstore for resources: A wide range of topics including puberty, dating, relationships, and much more are addressed.

8. Don’t worry about doing only big gestures.

Take time to thank those in your child’s life for help or care.

9. Take time for yourself!

Avoid burnout! If you have those negative self-thoughts – I haven’t done X, my child can’t do Y ­– stop It! Give yourself a pat on the back – you’ve come this far.

  1. Try to maintain heathy habits: Get exercise, wholesome nutrition, and adequate rest.
  2. Seek out and engage in activities that are meaningful, provide fun or relaxation, or help you to de-stress.

10. Take time to breathe; enjoy your child.

Search for the positive things in the moment. Yes, there may be some trying days when your only prayer of gratitude is, “Thank you God for the sun and stars”. Yet, if you maintain a focus on your blessings, and try to stay mindful of the “big picture,” it can have a dramatic impact on your attitude and approach.

  1. Focus on what your child can do, not what’s missing.
    Knowing that we can be loved exactly as we are gives us all the best opportunity for growing into the healthiest of people. – Fred Rogers (Mr. Rogers)
  2. Celebrate those “baby steps,” whether learning a new skill or demonstrating an ability now that has taken weeks, months – or even years – to learn.
  3. It has been said that you can’t always control your environment and circumstances – but you can control your response to it.

The most important advice one can give is to enjoy the journey. Live your life – it’s not just about surviving, or going from one long list of “must dos” to another. You’ve heard it said that this journey we are on is a marathon, not a sprint. This is true. But life is what you make of it, all along the way.

Success is not final, failure is not fatal: it is the courage to continue that counts. – Winston Churchill

Jan Combs can be reached at jcombs@autismsociety-nc.org or 919-865-5081.

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