I’ve learned soooo much about the special education process. The process has sucked but I’ve learned that early intervention is key. I want to figure out a way to share what I have learned, so that ALL children, can be given the tools they need to thrive. One day, when I am better, I will set up workshops to help parents identify signs in their children.
Here are some of the lessons I’ve learned having a child with special needs:
Lesson One: Listen to your intuition. If you feel like something is off with your child, you are probably right. Trust yourself as a parent.
Lesson Two: Have clear communication with your partner and caregivers. In the beginning, there were things I observed that worried me and my husband did too. But we didn’t talk about it with each other because we thought it was “in our head.” Once we both voiced our concerns we realized that something big was happening and we needed to better our communication to be on one accord for our daughter.
Lesson Three: Ignore other people. Many people will say the behavior is “normal” or that your child is just “bad or naughty.” Trust your intuition.
Lesson Four: Shame and embarrassment will be your biggest obstacle to getting your child the help they need. For me, I hated the term, “special needs.” I kept trying to “correct” people, by saying my daughter has a “speech delay” not a disorder or not special needs. But that’s bullshit. That’s my ego. That’s my judgment about what “special needs” means. I didn’t want people to think my child was “slow or retarded.” I’m just being totally honest. That was what I was struggling with internally.
Your child, like my child, needs you (me) to get over “your(my) issues about what they should be” and get to work on giving them the tools they need. THIS IS NOT ABOUT YOU! THIS IS NOT THE TIME TO WORRY ABOUT PEOPLE TALKING ABOUT YOU. This is the time to figure out how to get the tools they need to be ok.
Lesson Five: Early intervention is key! Most states provide FREE early intervention services for children that qualify before they turn 3 years old. If your intuition is telling you something is off, get them tested. It’s free.
Lesson Six: Prepare yourself for battle. When your child has special needs, you are going to face the giant school bureaucracy with a slingshot. It is imperative that you get the right information about your rights, your child’s needs, and fight like hell to make sure your child get’s those services.
Lesson Seven: Eliminate the word, “bad” from your vocabulary. That term, “bad” is the reason why so many kids go undiagnosed for learning disabilities and special needs. Kids, especially kids under 4, aren’t “bad” they are communicating. It’s up to you, to figure out what they are trying to say. Especially, if they aren’t speaking, it is NORMAL for them to hit and yell, because they don’t have the words to ask for what they want. Parenting is about helping your child become independent and successful. It is not about control and making you look good.
Lesson Eight: Do As Much Early Intervention As Possible! Speech Therapy, Occupational Therapy, Physical therapy, food therapy, mental therapy is not for “rich or white people.” It is for people who need it. Again, get over your issues, your shame, your embarrassment, and eliminate any in your life who will try and stop you from getting the services your child needs. Again, it is about the child.
Lesson Nine: Learn about the IEP process as early and as thoroughly as possible. Again, many children with special needs, have, duh, special needs. Some kids, like my child, can’t sit still for long. Not because she is bad but because her body needs to move. If we didn’t have the early intervention done, and the doctor to label it, (Sensory Processing Disorder: Sensory Seeking) and the State to provide services, she would be punished at school.
True story: I got a call to pick my daughter up from preschool, she is 3, because she wouldn’t share the iPad and hit a student. That went on her permanent discipline file. My daughter doesn’t have the words or the developmental comprehension yet to understand sharing. However, if I didn’t have the knowledge about her condition, I could not have fought the school to have the retracted from her permanent file.
Further, I had to have ALL of my daughter’s special needs put into an IEP so that she could not be punished for behavior she can’t control. I am convinced that part of the reason so many young kids of color is being disciplined earlier and earlier have to do with undiagnosed special needs.
Lesson Ten: Find allies. We have a lawyer. Our lawyer, became a lawyer, after she was a special education teacher and had a child with special needs, and had trouble navigating the system. A SPECIAL EDUCATION TEACHER couldn’t figure out how to get Special education services for her child. It is a broken, broken system. Reach out for help and don’t try and deal with the school by yourself. They will lie. They will punish your child. You have to advocate for your child. You.
Lastly, Share your story. Too many people feel ashamed about biology. Everyone’s brain and body is different. There is no shame in having a child with special needs. However, when people don’t share their stories, other people suffer, because they have to navigate the system on their own. We need to help one another. And that starts by talking openly, frankly, and sharing what works and what doesn’t work with one another.
Our children are not in competition with one another. My children are not in competition with one another. Just because a parent post pictures of their child’s report card and it has all A’s, that doesn’t make your child any less special or you any less of a parent. My daughter did well at circle time yesterday. Circle time is her most difficult area. I am just as proud of that as someone is of straight A’s.
In closing, my daughter is a delightfully intelligent child that has special needs. She is delayed in speaking sentences but advanced in all academic areas. Even if she wasn’t, it wouldn’t matter. All children are different and they are all special. It’s the parents and school systems that have the problem.
Let’s help each other. I’m willing to share my lessons learned and I urge other parents to talk to one another and share their lessons learned too.