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[Parent Tips] How to Be an Advocate for Your Special Needs Child

[Parent Tips] How to Be an Advocate for Your Special Needs Child

When you decide to have children, there are questions and concerns that arise in your mind. “What happens when they are sick?” and “What if something goes wrong?” were thoughts that were in my mind. Nothing really prepared me to welcome my first son into the world and find out that he is deaf.

In our case, we found out after our child was born that he was deaf. We had no previous history in our family with hearing loss. We had no idea what the next steps should be, what our rights were, and what the state should be doing for us. The weeks following our first child being born were hard to say the least. We had so many different organizations, school advocates, and state representatives calling and asking us questions about our son that we didn’t have answers to because we had literally just found out and were still coping with what would now be our new normal.

After everything settled, we conducted some research, and then the school district came out to assess our son. After that, we had a better handle on what our next steps would be. I have put together a guide to the three most important ways to advocate for your child with special needs whether it is a physical, developmental, behavioral, or sensory impairment:

Ask questions and do your research

Luckily for us, the state of Minnesota has a great program in place that will help your child and family learn to develop and grow with a disability. If your state has a program like this, take advantage of it. Within 30 days of our son being born, the Minnesota Department of Education had the school district come out to our house and answer any questions we might have about our son’s disability and assess where he is to determine what needs should be met by an individual family service plan (IFSP). If your state does not have something like this in place, do your research, and find what organizations are within your surrounding area that have experts about your child’s disability.

We were also contacted by a local organization about our son’s disability that sent us a ton of information and resources to help us with the beginning stages of dealing with our sons’ disability. There are tons of local and national organizations and even Facebook groups that can connect you with other families who have a child with the same disability. A couple of sites I always refer to are the Center for Parent Information and Resources (a national organization) and the PACER Center (a state organization). While the PACER Center is specific to Minnesota, its site features a lot of great general information for parents as well.

Keep yourself organized and get a plan

If one of the advocate groups mentioned above gave you a nice little notebook to keep notes, documentation, medical records, phone numbers, and email addresses, use it! But, if not, take this time to go get yourself a folder or binder to keep all this information organized. I can’t stress enough how helpful it has been to have all this information in one place. With all of the information and research you have done up to this point, decide what areas you and your family need help with the most. Write EVERYTHING down so that when you find the right person to answer your question, you won’t forget anything. We all know that after having a child, it is hard to keep all of your thoughts in your head and remember them!

If your school is the group that you have decided to get help from, now is the time to write down goals that you are wanting for your child within the next couple of weeks, months and even years. If you have gone to an outside clinic to get extra help with your child’s disability, make sure that the clinic is on the same plan as you and can help with what you want the outcome to look like.

Set goals and follow them

No matter what you have decided to do in step two, make sure that you have set goals with your child’s IFSP/IEP team or outside clinic so that each person knows what to be working on at any given point.

In this step, it is important to set goals not only for your child but also for yourself. You are learning about this disability right alongside your child. If you have questions about what you can be doing at home, this is the time to have those experts help you as well. An IFSP can be set up to help guide you as a family at home in everyday activities (e.g., how to potty train your child who has a disability, how to help your child with dinnertime, how to have tantrum-free bedtime).

Each goal should have some sort of measurement to know when your child has accomplished it. If your child is not meeting goals or maybe accomplishing their goals quickly, it might be time to reevaluate and either make them harder or easier depending on the situation. You will want to make sure that these goals are at an appropriate level for your child to strive toward.

I think that the biggest thing to remember (and probably the hardest part of this) is making sure that you are always your child’s biggest advocate. Your child is counting on you, and while sometimes it may be hard, the progress you will start seeing if you follow these steps will make everything worthwhile.

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