In my previous life (before I was a special needs mom), I was a social worker. My resume is almost as eclectic as I am and I worked with a large variety of people. Foster care, adoption, child protective services, group homes, palliative, Native Americans, teenage sex offenders, elderly, abused, medically fragile, addicted, you name it…I probably ran into them.
During this foray into my personal version of saving the world, I came across many, many people with special needs. My vocabulary included things like Individualized Education Plan, hippotherapy, Autism Spectrum Disorder, Durable Medical Equipment, tidal volume, Advanced Directives and a whole host of other words and phrases that we, as special needs parents, are all familiar with. I had no idea that I would be using these words in my day-to-day life, even when I was not working.
As a director for several companies, I was able to meet and hopefully help parents, siblings and children navigate “The System.” I also became fluent in speaking Insurance and Doctor. I seriously believe that those languages should be taught in college. It will get the average person a lot farther than a semester of German! Familiarize yourself with the right terms to keep up with the new foreign languages that will pop up in your journey.
I also learned that you are your child’s best advocate. You know them the best and you want whatever is going to improve their quality of life. There are a lot of people out there to help you through this, but they will never know your child like you do. Anyone who is disabled in any way needs someone to advocate for him. As a parent, it is your job to second-guess. Ask the hard questions and fight for what you believe needs to happen with your child.
Sometimes it can get so overwhelming that you just sit back and nod your head, letting the professionals tell you what to do-because they are professionals! I am not bashing the medical professionals out there. Hey, I used to be one of them! They went through a whole lot of school, tests, and other stuff to get them where they are today. Without these professionals, the majority of us would not have a diagnosis to explain what is happening with our child. I used to have to tell my patients all of the time that they practice medicine. Trust them, but be smart enough to do your homework. I also learned that Google does not have all of the answers. Surround yourself with the right people. You have the right to get a second opinion if you want! I think that some of us forget that. Still, go with your gut and follow that “Mommy Instinct” if it tells you that something isn’t quite right. If you do not get the answer that you want, ask someone else. “Who is your boss’s boss?” is a great question when you hit a roadblock. Come prepared to meetings and research new ideas to present to your team, whether it is at school or a doctor’s office.
Right along with being someone who gets answers, you are the best person to show your child love and affection. Sometimes we distance ourselves from things that are hard and make us sad. After being a social worker for years, I have realized that not all mothers love their children. If you are reading this, you are probably not a part of that group. No one can love quite like a parent. Be willing to give professionals all of the information that they need to get to know your child. Talk to other parents who have children with similar capabilities. Above all, don’t be afraid to ask for help. You might be surprised who ends up being your personal champion.
I personally wanted to be a social worker because I could help people. It was not because I wanted to be rich or famous. It was hard, mostly thankless work. It really prepared me to be a mother. The people who are helping you today are probably there for the same reasons, but they just probably get paid a lot more than I did! In the end, no amount of education can provide the same insight that a parent can.
Photo by familymwr