From Parent to Advocate: 10 steps to getting the special needs of your child met

The day my daughter was diagnosed with a rare genetic syndrome was the day that I began my self-taught training program for special needs advocacy.

I had much to learn about her diagnosis and much to change about my approach (I usually like to please people) and I knew the process would be intense. I had to educate myself on the diagnosis and its implications on her cognitive and physical development and identify the special needs required to maximize her potential but also find a strong yet diplomatic voice inside me to make sure we received these needed services. The following 10 steps are what I learned in the process…

1. Learn to listen:

In the days, weeks, and months after you receive your diagnosis your only focus is to become an expert on the special needs of your child.   Listen to everything the professionals have to tell you and learn as much as you can from other parents who are living it – you don’t always need to reinvent the wheel. The more you understand what it is you are dealing with the better you will be able to understand how to meet their needs. You don’t necessarily have to know the specific therapies your child needs but you do need to become the resident expert on their diagnosis.

2. Make it personal…because it is:

The best piece of advice I ever got was from my daughter’s early intervention teacher. She recommended that I put an “all about me” packet together with every piece of information I had regarding her diagnosis. Include all evaluations that had been performed and any recommendations made. She also told me to include a short biography about my daughter that included her likes, her dislikes, and strength and weaknesses. I also included a small paragraph about our family and how we were all managing her diagnosis. The most important thing I included was a picture of my daughter on the cover of the packet. It humanized my daughter and made her a live person instead of a folder full of disabilities. I then hand delivered it to the director of the program.

3. Legalese:

It is crucial that you learn all aspects of special education law. Some useful resources are IDEA (www.idea.ed.gov) and wrightslaw (www.wrightslaw.com). Consider taking an online course or attending a workshop in your area. Learn how to read an IEP; it is the road map to your child’s education – if you can speak the language it will be easier to get their needs met.

4. Don’t be afraid to speak up (be firm but respectful):

In order to be a good advocate for your child you are going to need to speak up. It is important that you clearly communicate your needs and concerns in order to receive the right services. How you communicate these needs are just as important as what you communicate. Remember to be direct about what you are asking for (provide specific examples – not vague generalizations), respectful in how you are asking for it, and diplomatic when listening to their response (you may not get everything but often a reasonable compromise can be reached – an all or nothing approach will not serve you or your child well).

5. Change your seat…change your perspective:

Long before I had children I was a social worker at a day and residential treatment program for children. I approached special needs from a completely different perspective than I do today. I was the clinician not the parent. My goal as a clinician was to make sure we were meeting the needs of the parent and the child but also to make sure the child fit into the overall structure of the program. At that time the, child was one of many in my caseload and I had an obligation to all that were under my care. From a parent perspective, I now have a caseload of one. My only concern is that my child’s needs are met. To be a fair advocate you do need to remember that the team you are apart of has obligations beyond your child and sometimes your needs cannot be met instantly. If you come at it with this understanding I can assure you will experience less hostility, less aggravation, and more of a team approach to getting your child’s needs met.

6. Remember you are part of a team:

Educating a special needs child is a team sport. The team will be made up of many different disciplines but will also include you as only you can offer the perspective on how your child functions at home.   Consider yourself just as important as everyone else gathered at that table. It is crucial to not only listen objectively to others but also be honest in what you share. A multidisciplinary approach is a very strong tool in developing a comprehensive treatment plan for your child. Remember check your ego at the door and nicely remind others to do so as well…. it is not about you or them it is about your child.

7. The truth can hurt but it is how we grow:

Dr. Brene Brown said it best, “Vulnerability is the birthplace of innovation, creativity, and change.” In order to develop the most comprehensive and effective treatment you need to be honest about your struggles and concerns. Do not be afraid to appear vulnerable – as a parent you need to express to the team the realities of raising a child with special needs and the dynamics it creates with other family members. Do not assume that the rest of the team truly understands what it is like as well as you do. I know it can be hard to share the painful and emotional times but without understating the difficulties it will be impossible to implement new and important strategies.

8. Reach out in the good times too (it is not all bad):

Everyone likes to hear positive feedback. It makes people feel good and when you feel good you tend to be more motivated and productive. Don’t just call on the team when things are bad; tell them the positive stories that have occurred as a result of their input or the strategies they have implemented at school or home. Drop them an email and let them know that what they do is making a real and honest difference. Trust me it will motivate them to stay committed and invested in your child.

 

9. Consult with experts when you need to:

The IEP is a legal document and it is important that you understand how to read it and what to look for as it serves as the road map for their education. If you are not sure than it is definitely worth the time and money to have someone review it for you. Ask a friend or hire a lawyer or a special needs advocate to look it over for you. Better to be safe than sorry. Getting the IEP right is money well spent.

10. Trust your instincts…they are usually right:

This is probably the most important lesson I have learned so far. Your child’s needs are unique and likely require an individualized approach. Therefore, there is not one right way to handle these complex issues. Therapists, doctors, and educators have their opinions and recommendations but ultimately you as the parents know best. Always trust your instincts. If you genuinely feel that something is wrong it usually is and do not be afraid to change course or express your concerns.

 

It takes patience, practice and perseverance to learn how to be an advocate for your child and your family. Be kind to yourself and to others while you learn how to navigate the complex and often overwhelming world of special needs. You will find your inner voice and discover all the incredible things it can accomplish.