Since having a child diagnosed with special needs, I’ve learned so much about navigating the special-education process. First thing: the special education system is a hot mess—even for savvier parents, it’s incredibly difficult to navigate. The second thing: Early intervention can make all the difference.
To give you a head start, I want to share what I have learned, so that that your kid (and all kids!) can be given the tools they need to thrive.
Here are 10 lessons I’ve learned from having a child with special needs.
Listen to your intuition
If you feel like something is off with your child, you are probably right. Trust yourself as a parent.
Ignore other people
Many people will say behavior is “normal” or that your child is just “bad” or “naughty.” Trust your intuition.
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 special needs. But that’s bullshit. That’s my ego. That’s my judgement about what the term “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.
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.
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 gets those services.
Eliminate the word ‘bad’ from your vocabulary
“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.
Speech therapy, occupational therapy, physical therapy, food therapy, mental therapy are 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.
Learn about the Individualized Education Program (IEP) process
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 I didn’t have 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.
I once got a call to pick my 3-year-old daughter up from preschool because she wouldn’t share the iPad and hit a student. That went on her permanent discipline file. My young daughter didn’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 that retracted from her permanent file.
Further, I had to have all of her 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 are being disciplined earlier and earlier have to do with undiagnosed special needs.
We have a lawyer. Our lawyer pursued her career because she used to be a special-education teacher. She has a child with special needs, too, and she 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.
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 and 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 posts 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.
My daughter is a delightfully intelligent child who 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 the lessons I learned and I urge other parents to talk to one another and share their lessons learned, too.