I just turned twenty when I had my first baby. I was a very young mom and I wasn’t completely sure how I was going to raise this tiny human. In addition to my age and immaturity, he was born having breathing issues, and these issues persisted for six months after his birth. He needed lung clearance, nebulizers, and around the clock care. If it weren’t for my mother during these first years, I would have never been able to care for my baby. He was very sick, and as he grew older, it was clear there was something different about him.
Over the years we saw a plethora of physicians who diagnosed him, misdiagnosed him, and continued to list things that made me worry about his future. As time wore on I stopped worrying about the labels and what everyone had to say, and I began to tune in to what my baby had to say.
Having a child with special needs taught me so much about being a mother and an advocate. He taught me to fight for what I know is right. And he taught me that not everything is what it seems.
So, if your child is facing a diagnosis, from a mild learning disability to a profound physical difficulty, I would like to share 6 lessons my son taught me:
1. A diagnosis, of any kind, shouldn’t be made an identity.
The first thing I learned from raising a child with disabilities and health difficulties was that a diagnosis isn’t always something that is set in stone. Doctors make mistakes. Diagnoses change based on new research and understanding of any disease and disorder. Every person is an individual, and the things you read about one person with a disorder doesn’t apply to all people with that disorder. The most important thing to remember is that a person isn’t a disability, they have a disability. And as a parent, it isn’t my job to limit my child with the world’s labels, but to allow my child to form their own identity.
2. You learn quickly the biases and plain stupidity of the world around you.
Family, friends, doctors, and teachers are the last people you’d expect prejudice and ignorance from, but typically the first line you must defend your child from are these very people. I’ve had to come between my son and a terrible doctor who couldn’t handle my overstimulated toddler. This doctor raised his hand as if he were going to strike my son. I began to cuss the man out, and each of the staff, as I ran out of that office with my children and proceeded to call state agencies to report the doctor. I’ve had to ask family members to not refer to my son as “retarded” and cut off ties with those who could not adhere to my rules regarding my child. I had to fight with teachers and schools regarding the kind of help he needs and making sure he is getting the best education. Sometimes schools can be the most constricting place for a child that is not “typical”.
3. You make sacrifices for your children, with or without special needs.
After running in circles and seeing the type of help my son needed, I realized I was looking in all the wrong places. I had the education and experience to help him. It didn’t make sense that I kept sending him into an environment that wasn’t always the best for him, so I began to educate him at home. He receives some therapies through state programs, he has wonderful doctors, independent therapist, and teachers. He has everything he needs and is thriving. At the end of the day leaving my own agenda and doing this for my son wasn’t at all a sacrifice, it was just disguised as one, it was a blessing.
I also understand that many families may not be afforded the opportunity to make the decisions my family has made. And we understand the privilege behind why we have the chance to do the things we are able to do, and with our privilege, we know it is our job to help those less fortunate.
When I was a young single mom, I didn’t have the ability to provide like I do now. Having a husband who is an amazing father helps more than I can ever give him credit for. Because of this, I have made it my job to help families get in contact with agencies, scholarship programs, and advocates from around our state so they can find the resources their child needs. I have found every loving parent does what they can do to ensure their children are cared for, loved, and in an environment that helps them thrive.
4. You learn to fight, and you don’t care who you must face.
I remember, so vividly, this primal urge to protect my son immediately after his birth. I was hyper-aware of the sounds in our home, who came into our vicinity, and I was very aware of people touching him without my consent. I remember asking my mom right after having my son if it was normal to want to pounce on people for touching my baby without asking first. I felt his intense need to protect him, and that need has never gone away.
Nothing is more important than my son’s well being. All the nights of lost sleep, all the hours in therapy, all his tears, all my tears, all the prayers, all the hard work… Maybe it is selfish, but I spent too much time making sure he is okay for anyone to mess it up for him. Maybe it is irrational, but until he is an adult and feels like he has his feet on solid ground, I will be the mama bear. I am protective, I am vicious, no one will mess with my baby. He has overcome too much for any person to ruin it for him now.
5. Things change.
When he was first diagnosed with something, it was PDD-NOS, or Pervasive Developmental Delay-Not Otherwise Specified. Whatever that means… But then it was taken away.
Diagnoses were always being added and taken away. Things kept changing and the books used to diagnose these things changed, too. All these things were swirling in the air around us all the time, but then one day I woke up to the fact that none of it mattered. It didn’t matter what the doctors said was wrong or what they thought was right. All that matters is this little boy in front of me. I don’t need them to tell me what I already know, in fact, I know his strengths better than anyone else in the world. I began to look to him for guidance, the medical world was secondary, simply a tool to get him to people who can help him flourish.
6. I didn’t have a child with special needs because I am special.
Over the years people told me how special I am because I am his mom, or because I’ve done “such a great job with him”. I have received praise and been told God must have given him to me because I am somehow “special”. As nice as it was to hear that in the beginning, I know it is utter bull crap.
I got to be his mom because I needed him, not the other way around. I am not special, I never was, but he is. He has been the one to teach me all the lessons. I am only a great mom because he made me that way. He could have had any parent in the world, he ended up with me. He isn’t lucky, I am.
Ten years later I am thirty and he is ten, he has gained three more brothers since his birth. And tonight, he and his brothers decided to camp out in my room with me. I hear him and our big dog snoring on the mattress at the end of my bed, and I cannot help but be amazed at how special he is. He is strong, empathetic, intuitive, sensitive, musical, funny, brilliant, adventurous, loving, and magical in every way. I can’t believe I get to be his mom!
So, if you just began this journey with your own child or a seasoned veteran, just know you are an amazing parent. It is hard, and you will feel like you’re failing, but keep your eyes on your child. Follow their lead and trust your gut, neither one will lead you astray.