If you’re the parents of a child with special needs, here are some lessons I’ve learned over the years that may make it easier to stand for your child when needed.

1. Speak up.

The best thing you can do is be a voice for your child. If you think something is wrong or you notice something, talk to your child’s pediatrician. Remember, you are the subject matter expert on your child. If you don’t like the answer you get, seek a second opinion. I don’t recommend going onto Google and looking it up. Call and make an appointment and address your concerns. You are your child’s biggest advocate. My pediatrician has always told me no question or concern is silly.

2. Advocate for your child. 

If you feel your child isn’t getting the care they need or the quality of care you feel you deserve, speak up. Patient Advocacy, through the military health care system, is amazing, and they can be the middle person that has no prior involvement. If your child has to be seen every three months and hasn’t been, say something and speak for your child. ICE comments are also a great way to address a problem.

3. Stay on top of the school system. 

I swear this is the hardest thing I’ve ever done. It feels, to me, that the process is so long they hope you give up. Keep trucking! If you’re having your child evaluated at the school, stay informed and be included in all the processes. The IEP process can be lengthy but don’t give up—make your concerns for your child heard. Another great tip is to take a tape recorder with you to all meetings. Make sure you have permission first. This can serve as a helpful tool. If they say something and you have it recorded, it is official and you have a record of it.  If you’re just starting the process, make sure you start early so your child can start school on time. When you move or PCS, make sure to get copies of all paperwork, and call the school you’re moving to and see if they would like the information before you arrive.

4. Document, document, document. 

We went to the store and bought a spiral notebook which became my daughter’s log. I wrote everything down in this log so I had a record. I wrote down every appointment my daughter had, which included appointments with her developmental pediatrician, general pediatrician, and the school system. Also, keep records of whether they kept the appointment or they canceled. Don’t forget to write down any calls that deal with your child, too. Include the time of the call and what the call was about.

5. Enroll in EFMP.

If you feel your child needs to be enrolled in the Exceptional Family Member Program, ask your provider.  This program is designed to help military families and to make sure their family always has the medical care they need, no matter where the military sends you. The program also provides support to families. They offer classes, outings, and fun family programs. They also have navigators to help you navigate the system and advocate on your child’s behalf.

This process is still new to me and I’m still learning, but I think the best thing I’ve done is not give up. The process beats you down some days, and you feel like you’re not getting anything accomplished, but you have to keep fighting for your child. Keep calling; keep asking questions. I became part of a support group, and it really helped. I was able to talk to other parents going through the same frustrating process as me. It helped me learn I wasn’t alone. This holiday season has helped me reflect on what’s important and be thankful for what I have. My children are a blessing and have brought so much joy to my life. I wouldn’t trade them for anything.

Please share if you have more advice for parents of special needs children. We want to hear from you!