Advocating for Yourself as a Special Needs Parent

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Advocating for yourself as a special needs parent is an important on your special needs journey.

Often, special needs parents are given advice on how to better advocate for their children. While this is a very important aspect of the special needs parenting journey, do not forget to also advocate for yourself.

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Importance of Advocating for Yourself As a Special Needs Parent

Simply put, your needs are important and valid.

Remember you are your own person with your own needs, hopes and dreams.

If you find it difficult to advocate for yourself due to feelings of guilt or the thought that it’s all about the special needs child, remember your child is counting on you. Counting on you to be mentally and physically well so that you can in turn help them as needed.

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When and Where You May Need to Advocate for Yourself as a Special-Needs Parent

Before you can start advocating for yourself as a special needs parent, it is helpful to know the places and times you may need to do so. Here are just a few common occasions.

  • With your child’s school
  • At the doctor’s office
  • During back to school/meet the teacher events
  • When setting up IEP meetings
  • While working with in-home therapists
  • Out in the community

Think of some other areas of your life in which you need to start advocating for yourself as a special needs parent.

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What is Self-Advocacy?

Before we go to the next step, it is helpful to have a clear definition of self-advocacy.

When we advocate for our special needs children, we are speaking on their behalf about their needs.

Self-advocacy is speaking up and sharing your needs.

Remember, other people do not know your child and his or her needs as well as you do. They also do not know your unique situation and needs. This is why it is important to advocate for yourself as well as a special needs parent.

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Ways to Advocate for Yourself as a Special Needs Parent

Just like setting boundaries and advocating for your children takes time and practice, self-advocacy does too. Give it time and you will become more comfortable with repeated practice.

The first step is to know your needs. Think back to the sample occasions listed above. What are some times you feel your needs are not being met? For example, do you feel your child’s teacher isn’t communicating with you often enough? Or does the in-home therapist show up late and disrupt the home routine?

Clarify what your needs are. What needs are not being met? What do you need going forward?

The next step is to start sharing your needs clearly and politely with others. You may not see immediate results, but continue speaking up for what you need.

Next, let’s look at some examples.

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Examples of Self-Advocacy as a Special Needs Parent

Here are some examples to help you think about ways you can better advocate for yourself. Some are things I have tried in the past, wish I had tried, or am currently trying. Others are things other caregivers and parents have modeled for me in my parenting and professional journey.

  • Situation: Child’s school is calling and emailing multiple times a day.
  • Need: You need to work with few distractions and would like one point person instead of speaking with multiple people throughout the week.
  • Self-Advocacy: I am feeling overwhelmed by the amount of communication I am receiving from multiple people and sources throughout the day. I am also trying to work and manage other children’s needs. What would help me is having one point person who contacts me by email. I can then respond when I have a break in my day and have had time to think about the school’s concern and a way to help. Please only call me at work when it is a true emergency.

  • Situation: The school wants to hold an annual IEP meeting during a major time conflict in your schedule. Please note I am not suggesting you ask for meeting time outside of school day hours.
  • Need: You need to attend your own appointment or be at work.
  • Self-Advocacy: I have a scheduling conflict at that time. This meeting is also important to me. Can we find a different time during the school day to meet. Some times I have available on my end are (it is helpful to provide about three alternative times.
  • Note: Share if transportation is an issue. Many schools can help with this. If time is an issue, ask if the meeting can be held virtually. Some meetings are 10-15 minutes, but the drive to the school is twice as long. It doesn’t hurt to ask.

  • Situation: Your child’s in-home or private therapist is addressing goals that do not benefit the family. For example, they are working on folding clothes, when the major disruptions occur when having a family meal.
  • Need: You would like to be able to sit down for a family meal.
  • Self-Advocacy: I appreciate that you are working with my child. However, right now folding clothes is not our biggest concern. I would like help with behavior at the dinner table so I can enjoy a meal and a less stressful evening.
  • Note: I once had to advocate not addressing mortgage and credit card planning goals with my child who had yet to secure a summer job. While schools need to primarily focus on goals tied to academics, in-home/private/in-community therapy should be able to work with the needs of the entire family and address things like behavior at the dinner table.
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Advocating for Yourself as a Special Needs Parent: Summary

Advocacy and self-advocacy is an ongoing process. Please keep at it and remember that if your first attempt(s) do not meet with immediate success that you are not a failure. Your needs are important keep sharing what you need.

In short, identify the situation, the need, practice how you will communicate that need clearly, and then communicate the need and the request for a change.

You may also be interested in Setting Boundaries for Better Self-Care.

Join us on our Facebook Page and share ways you have advocated for yourself as a special-needs parent or caregiver.

An empty cup of coffee with a red heart and the words thank you at the bottom. Text reads: Thank you for filling your cup with us! ~ Full Cup Caregiver

(This post may contain affiliate links. I may receive a commission, if you purchase an item through a link, at no additional cost to you. As an Amazon Associate I earn from qualifying purchases. Genuine recommendations only.)