Don’t listen to the Naysayers
Before our daughter was diagnosed with autism, plenty of people were ready with their oh-so-helpful opinions on why our daughter seemed to have so many problems. There is nothing wrong with your child. She will grow out of it. What she needs is a good spanking. Her diarrhea is probably normal. Quit being such a worrywart. Listen to the doctor. Why don’t you discipline her? Your child is unmanageable and rude. If you just took her outside more often she would sleep better. She doesn’t nap because you don’t make her. She is so afraid of everything because you shelter her. I have never seen a child who could read at her age in a 25 year medical career, but I wouldn’t worry about it. She will grow out of food sensitivities. She is disrespectful to her teachers, respect starts at home, you know. She doesn’t work up to her potential. She should make more friends. If you had 3-4 play dates a week, she would make more friends.
These are actual statements that have been made to me, to my face, as a young mother with her first baby, by relatives, teachers, and doctors. Looking back, 13 years later, it is a wonder I didn’t haul off and beat the ever-loving crap out of some of these people. But I didn’t because I was bewildered. I figured I was doing a really bad job being a Mom. I listened to people, and tried to figure out what I was doing wrong. Our little girl was very different than any other child I had ever had experience with. It was not as if I had no experience with babies, either. I grew up in a large family. I had worked as a baby sitter, and later in a day care setting. I had changed plenty of diapers by the time I had my first baby, but I had never seen diapers like this.
I had approached motherhood very confidently, and when our daughter didn’t respond to most of what I thought were good parenting strategies, I was bewildered. It is a stupid word, but I can’t think of a better one to describe how I felt. Everything I ever thought I knew about raising a child was turning out not only to be untrue, but everyone seemed to think it was my fault. I am generally a very confident person. I am opinionated to a fault and really don’t care much what other people think. I am a stick-to-your-guns type. I tell you this about myself so you will understand that I was completely rattled by what was happening to us. I really questioned myself and felt like I was so stupid to not be able to do simple things like have my child take a nap or potty train in a reasonable amount of time. She was diagnosed with Asperger’s when she was in second grade. At first, it was a huge relief, of sorts. I was not crazy, my concerns about her strange behavior were validated by the neurologist. Once the shock of finding out our little girl had a terrible disease had passed a little, we once again reached out to relatives, teachers, and therapists. To this day I am stunned by the lack of support we received from everyone. Most people simply decided that they “didn’t believe” in autism. Many of our relatives still thought I was crazy, some kind of hypochondriac, making up all kinds of claims about our daughter. One relative told me at Thanksgiving that some children just have difficulties growing up, and that she didn’t understand why we kept insisting on the fact that our daughter has a disease. No amount of paperwork from the neurologist would convince them. But it didn’t end there. Now we had a different kind of opposition to deal with. We heard: Autism is not treatable. Autism has no cure. Psychology can help. “Alternative” treatments are not reasonable. Just give her prozac. She doesn’t need any intervention at school. She just needs discipline. The idea that wheat can make her lose her mind is just stupid. You are being too strict. What kind of mean person never lets their kid have a donut?? Lighten up!!
I generally do not approve of whiners. I think, if you have a problem, you should do everything in your power to try to solve it, because whining doesn’t help and hinders you from getting the job done. I have avoided telling our “story” in the past because dwelling on it all is unproductive and depressing. I decided to go ahead for one reason- I am hoping that by reading our story, maybe some young mother or father out there can borrow some courage. I hope that you have supportive families and friends. Before we had our autistic child, our relatives were very supportive. That all changed. To be charitable, I think neurological disorders are really hard for a lot of people to bear. They certainly do not want to hear about an illness that is genetic that makes you go crazy, because then they have to look in the mirror. Denial is much, much safer. We have learned that in order to succeed in finding real solutions for your child, you have to be ready to show a lot of personal courage. If you have concerns about your child’s health, and everyone is telling you you are wrong, maybe you are being a paranoid, first time mother, but maybe not. Listen to your gut. Your maternal instincts about your child are probably right on the money. If your pediatrician is not helping you with your concerns, get another one. Don’t waste your time wondering if you are doing the right thing, if the things you are doing are moving your child in a positive direction.
Don’t listen to the naysayers! There are always going to be those who feel like doing nothing or only doing the mainstreamed approved thing are the safest course. Our children do not have the time for mainstream medicine , grandma , and the FDA to catch up with reality. We have to move now while our children are young and can benefit the most from the newest, most cutting edge medicine and therapy we can provide them.
If you are reading this because you are grandparent, teacher, or other concerned friend, you are already doing more than most people just by learning about autism and showing concern. Parents of autistic children do not need advice. They do not need criticism. They do not need judgement. The child does not need harsher discipline or donuts. A family with autism in it is fighting a terrible battle everyday. They need your support, your time, and your love. Please give it to them. It will mean more to them than you will ever know.
In my case, it took my husband a few years to get on board with what I was trying to do with the GFCF diet, and other cutting edge therapies. I think many women experience this. If you are one of those women, do not give up! If your husband is a smart guy, who loves you and your children, when he starts to see results, he will come around. If he is aimiable at all try to work it out. Your child will need both of her parents.
Take courage. You can stand up to the doctor, you can negotiate calmly but firmly with the school principal, you can do brave things like change your child’s school or tell your mother-in-law that your child is NOT eating her cookies. With the help of good doctors, you can bravely take small calculated risks on new therapies. It is your child’s life at stake. If people think you have turned into a fringe wacko- let them. You are the only one who will have the needed drive to save what can be saved of your child’s life. You can do it. You are not alone.
One last thing- I know this kind of thing offends people nowadays, but if I could share one thing, it is that I finally gained the courage to do the things we have done for our daughter when I turned to God in prayer. Like Abraham Lincoln said, I found myself on my knees many times because I had no where else to go. The Lord took my hand and led me line upon line to the GFCF diet, to Dr. Bradstreet, to HBOT and all the therapies which have given our daughter a fighting chance for a normal life. I give Him all the credit for our success. If you have any questions that I can help you with, please contact me.