To those Family Members, Friends and Strangers at the grocery store who are silently and (and sometimes openly) judging us, our parenting and our decisions....
You may think we don't see the snickers, stares, whispers or eye rolls, but we see them, and they hurt. Every time.
My children do NOT act the way they do because we are bad parents, because we spoil them, or because we let them get away with things. They act the way they do because they have a Neurological disorder that affects the functioning of their brain.
EVERY THING WE DO IS METHODICAL. WE HAVE A REASON FOR IT.
And quite frankly we do not need to explain ourselves to you but we will to help you understand...
We work with a team of specialists on a daily and weekly basis who are guiding what, how and WHY we do what we do and say. SLPs, OTs, BCBAs, etc... This is what they have studied and specialized in, BEHAVIOR and how to modify it....
"BCBA stands for Board Certified Behavior Analyst. Individuals who have completed rigorous coursework and passed the exam set forth by the Behavior Analyst Certification Board (BACB) will be awarded with a license. Certification is maintained through continuing education requirements grounded in clinical and ethical practice. BCBAs carry at least a Masters Degree, have accomplished at least 225 hours of additional coursework, and must meet all other legal and professional guidelines in accordance with the BACB's national standards. BCBA's are highly skilled clinicians that are trained in the field of behavioral science as supported by over fifty years of empirical research."
Also there is a difference between asking questions (which I love and encourage) and challenging us on the decisions we make for our children. You do not know them, their medical history or what is discussed between us and their TEAM of specialists which include: Neurologists, Gastroenterologists, Developmental Pediatricians, Audiologists, Sleep Specialists, Genetic Specialists, and their general pediatrician. We all work as a team and make decisions together. What may work or be healthy for most children, may not work or be safe for ours.
Any and every medical decision we have made whether it be to vaccinate or not, eat gluten/dairy or not, to use biomedical treatments or not, or even to give my kids a McDonalds ice cream cone or not has been made with our team of doctors and carefully been made with good reasons...
You think we are lazy parents because we do not get up and put our child in timeout for every "naughty" thing my child does, we have a REASON...We are not giving our child positive reinforcement of our attention by reacting to every "naughty/inappropriate" thing they do. Instead we will ignore the unwanted behavior and redirect them with a more desirable one. Timeout does NOT work for our children, so please stop trying to tell me they need it or to be spanked.
You think we're ignorant and/or trying to be trendy when we put our child on a Gluten and Casein Free diet, we have a REASON...They may have had negative results on their allergy tests but we as their parents see a significant difference in their behavior when we restrict their diets. No we never said or thought it would cure our children's Autism, we are just trying to make their everyday life easier, and as comfortable as possible. We HAVE spoken to a doctor about this, like I said before, every decision we make is made with our doctors.
You think that I'm bribing our kids when we give them a skittle or m&m when they obey, listen or "come" when asked, we have a REASON...We are using positive reinforcers and motivators as instructed by their BCBA, doctors and therapists (yes they told us to use m&ms, gummy bears and skittles). He is learning that when he acts appropriately and does something we've been working on for sometimes MONTHS, he will be rewarded for his great and hard work, therefore making it more likely for him to behave positively or follow instructions in the future.
You think we're slacking and bad parents when we put a movie on and stick them in front of the TV so I can try to catch an afternoon nap, we have a REASON...My child has a sleep disorder and rarely sleeps at night, which means that I am also rarely sleeping at night. I have to stay up with him because if I don't, he will elope/bolt from our home and the chances of him being killed are extremely high. I am simply exhausted all of the time. I am exhausted because I have to anticipate every single thing my children are going to do, everything they need or want because they can not express those things for themselves. I am exhausted because I have to analyze every movement, sound and behavior and decide how I am going to react to ever thing they do or "say", in order to help my child thrive and grow. I am exhausted and need a break every once and awhile.
I could go on with a list of things we have been accused of or blamed for but I think you get the point. But what I'm not sure you get is that every time you challenge or question our decisions you are insulting us as parents and caregivers. You are belittling every day/night spent studying this difficult and scary neurological disorder that will be with my children through the rest of their lives. You insinuate that I am a bad parent. It is mean but mostly sad to us. Sad that you think so little of us as parents and it makes us second guess our relationships with you.
I'll leave you with a favorite quote by an amazing man we love and respect, Dieter F. Uchtdorf...
"When it comes to hating, gossiping, ignoring, ridiculing, holding grudges, or wanting to cause harm, please apply the following: STOP IT! It's that simple. We simply have to stop judging others and replace judgmental thoughts and feelings with a heart full of love... "
We are their parents. We know them, their bodies, their behaviors, their needs, quite honestly, you don't. We would never and will never judge you on the decisions you make for your family and your children because we love and respect all of you, our family, friends and yes even you the strangers at target who love to tell me what I'm doing wrong and how to cure my children. I would hope that we have earned the same respect from you. So please remember to be kind and stop judging.