Am I Really a Special Ed Advocate?

Having a child with special needs or special ed requirements can be disappointing, overwhelming, and unexpected. But, as you will discover (or already have discovered), your child needs you. Your child needs you to advocate for them with many people who do not have your interests or your child’s interest in mind. Your child needs you to have their best interest in mind at all times. Your child needs you. Period.

1. Get Over Yourself

I don’t mean to be or sound harsh with this advice of “get over yourself” because you will need to do just that to advocate for your child and his/her needs. I’m not sure how my section title ended up in this giant font size, but I decided to leave it that way because this is the big one; this is the difficult one. This one you have to do before you can do anything else. Get. Over. Yourself. It may take months or years of denial before you accept the role of your child’s advocate, but you will need to accept your advocacy role to do what is best for your child. If you find yourself asking “why me?” or “why my child?” types of questions, you fit squarely in this category. You may need to do some soul searching and acceptance of the situation before moving on. Once you have accepted that your role is being an advocate for your child’s needs and education, you can focus on educating yourself and making decisions about what is best for your child.

2. Educate Yourself

My husband and I spent an enormous amount of time educating ourselves about special ed and the special ed process, but there are so many things that we didn’t know, still don’t know, and probably, don’t want to know. But, in order to help our children, we needed to educate ourselves about the needs of our children and the special ed process within the school district. Thankfully, with the internet it is much easier to find information, people, resources and medical treatment or doctors. We attended seminars and conferences, asked many questions of our doctors, did a ton of reading, but it is still a learning process. Three resources that are extremely helpful in getting started in your own education are:

  1. Top 10 Mistakes Parents Make in IEP Meetings
  2. You Gotta Know the Rules If You’re Gonna Play the Game
  3. Ten Related Services For an IEP You May Not Know About

A word of explanation about these recommendations — One of the most helpful items I ran across was a list of the top 10 mistakes people make with IEP meetings. We certainly have made our share of those! Another article that is very helpful is one that my friend Grace Tiscareno-Sato wrote on knowing the rules of the game. These are just two examples of the type of information that is out there. Take the time to find this type of information and educate yourself – it will definitely be time (and money, in some cases) well spent!

3. Decide What is Best for You and Your Child

You are your child’s own best advocate. You know your child the best, you spend the most time with them – use all of that knowledge, reflect on it, and then decide what is best for you and your child. This acknowledgement even ended up on one mom’s top 10 list of things she learned from having a special needs child. I had lunch with a friend who I wanted to introduce to a special ed advocate, and after the lunch she said “You are right. I am the person who knows my son the best. I have to stop letting others decide for me.” You decide what services are appropriate for your child – there are many to choose from and you may not even know about them. Don’t let school districts, special ed directors, doctors, or anyone else decide for you. Use what they have to say as one piece of information you consider in making decisions, but don’t let them tell you what to do or decide for you.

No parent sets out to become a special ed advocate when their child is born, but that’s what happens when you find out your child has special needs or requires special ed services. Accept it, educate yourself, and do the best you can for your child.

If you have other advice to share about special ed advocacy or your experiences with it, please leave a comment.

8 responses to “Am I Really a Special Ed Advocate?

  1. Great post. As a special needs person myself, I think this list would be a wonderful reference for parents with special needs kids.

    Stopping by from SITS 31dbbb. 🙂

  2. In retrospect, I think we were lucky having preemies. From the get go, we knew that this was likely our life for a while. It was horrible to have to face it right at the beginning, before they were even born but I’m not one for denial and letting time slip away. By the time our kids were in school, I was adept at spotting kids who needed help, and needed it now, but time after time had to bite my tongue. I’ve done my fair share of coaxing others out of denial (I hope, sensitively,) being the observer at friends’ IEP meetings and attending our own. In the end, even with the training and advice we’d sought out, it got too emotional and complex to handle by ourselves so we hired a professional and while it was expensive, it was well worth it.

    • Thank you for commenting Alison – It clarified something for me – the use of an advocate, whether it is you or someone else, is important. For the last year, I have had the opportunity to work with my friend Grace on special ed advocacy and what she is doing for her daughter who is blind. She now advocates for others in their IEPs. Mostly it is in cases where the struggle to get appropriate services has gone on for years and the parents are at a stalemate with the district. A third party can help so much when that has happened because it is so easy to get emotional about your own child. I am sure you have many stories to share in this area!

  3. After spending 12 years as a classroom teacher and teaching special needs children in both self-contained and inclusive situations I can say, without equivocation, that the parents make ALL OF THE DIFFERENCE. By the time I met my students, they were already in the school system eight (or more) years, those children who consistently succeeded, knew what help they needed and were responsive to all types of accommodations. They were the ones who came from a home where the parents were well-versed in their child’s IEP, their condition and unabashed about talking about it with me and all of their teachers. My heart has broken over those children who do not receive the same kind of support whether it is from a lack of education about their condition or a misplaced, unecessary shame about admitting it!

    Your post is fabulous. And, in some cases, necessary! I know most parents DO, in fact, embrace the role of special needs advocates when they are called to that action. I can’t count the amount of lessons I have learned from THEM, but for those who are still resisting your first line of advice, I simply say: Your child will thank you, your child will have the ability and confidence to outperform many of those who are not special needs, and your child will become a more compassionate human being from seeing the value in accommodations.

  4. Hi Nicole – thank you for sharing your wisdom and experience. I want to figure out how we reach the parents who still feel shame and a sense of guilt – they are the ones who need the most attention. My friend Grace started giving a workshop on special ed and the basics. It has helped many people, but there are tons more who could use the information.

  5. This is a wonderful post! I was a special ed teacher until I became a SAHM 8.5 months ago and I found the parents’ involvement made all the difference. I hope many, many parents see this post!

  6. Hi Sonya,

    It’s my first visit to your blog and I love this post. I have a special needs child and can sincerely relate to all of this. Being a special needs advocate is a lifelong learning process and will change as your child ages.

    In the beginning, I got so caught up in being the perfect advocate for my kid, but I’m not even sure I know what that was. I’ve loosened up a lot and some of the specialists even said so at a recent IEP meeting.

    Thanks for a wonderful post.

    • Thank you for visiting – I think the idea of being a perfect advocate for your child can trip up a lot of parents or more likely not knowing what to do is the biggest factor holding parents back. What I have learned and am still learning in the process, is that no one knows – everyone has a piece of the puzzle and we all have to work together for the best interest of the child.

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