I spent a lifetime feeling invalidated, I was struck with even more of this when I became a parent. It is interesting how quickly people give advice or communicate how they feel you are doing it wrong. I found this harsh reality even more when it came from mothers, not only special needs ones. People can be so judgmental and down right hateful at times to mothers. I know this happens to fathers too, but there is a foreboding myth that if something is “wrong” with a child, the mother is at fault. Are we still getting blamed for the sex of the child? There is another aspect that plays into this as well and that is the “mom comparison,” which I find frustrating. I wrote about it in this post The Mom Spectrum.
I witnessed even more harshness when it came to special needs mothers.
However, I can really only comment on what I have experienced and witnessed. The moms that I have encountered who do not have special needs children, have given me unwanted advice, made ridiculous comments, or stayed silent and acted like I had the plague. Not all, but many did (do) respond like this. The few parents and organizations I had contact with during the beginning of our journey invalidated me as a parent. When I allowed Daniel to behave certain ways, they scolded me in “loving ways” and made me feel that I did not know what was best for my child. If I did not correct Daniel when he hand-flapped, made loud stimming noises, ran the perimeter of the building, did not make eye contact, and the countless other things I “allowed” him to do, they politely told me that they did not allow their child to do that or they shared (without my asking) how they helped their child to stop such behaviors.
I wish I could say that this has stopped, but sometimes this still happens.
Some people seem to feel that it is their place to help me help Daniel. While, I will embrace any suggestions that are constructive, I do not take kindly to people telling me that I “need to correct” my son or any of my children. I found myself doubting my intuition and the sound information I had been reading about autism. Ironically, I found much more support from the pediatrician and therapists we had at the time. I have heard and read from many parents who did not have such positive experiences. One of the most empowering experiences that set the tone for our transition to a more positive journey was with the therapists and pediatrician we had at the time Daniel started the diagnosis process. His doctor had a nephew who was diagnosed with Aspergers.
She had no doubt that Daniel was Autistic.
She took charge by having her staff set up all of the evaluations that we needed. (You can read some of that story here.) I went in expecting to plead my case, but I didn’t have to. She validated and supported me. She also did not have a negative perspective. She was comforting with a direct and enthusiastic approach to early intervention. She also didn’t push ABA type of therapies – her main focus was getting a diagnosis, speech, and OT therapy and detecting any possibilities of other conditions such as sight or hearing problems. It was challenging because I had mixed emotions: on one hand I was happy to start the process of finding answers and to have someone believe me; on the other, I was nervous about Daniel being Autistic. What does that mean? At the time, I was torn between my church family who “believed” for Daniel’s healing and telling me that autism was not of God and a medical environment that was giving me answers.
It was a great emotional battle within myself.
At church, I was told not to trust doctors or labels, (which I would now use the word diagnosis instead of labels) as well as being accused of my sin causing his autism. When that ticked me off and I spoke out refusing such nonsense, they went after David saying that his sin caused it. There were many other things that happened as well. We ended up leaving that church and found another church a year later; (I think that is an accurate time frame, OH, and sorry to the folks who have read all that before thank you for still reading! :-)) that was much more knowledgeable of autism and supportive of us. However, it was difficult to keep my hope, dealing with my own personal challenges of social confusion, depression, and anxieties. I cried a lot. I felt desperate much of the time because I was confused and did not know which direction to go.
When the doctor validated my concerns, it helped motivate me to follow my gut.
The therapists built into me even more and gave me answers. They gave me a whole new understanding about what Daniel was going through and ways to help him. They did a mixture of ABA type of methods, but mostly they showed me how to work with Daniel’s strengths and positive reinforcement. Instead of treating his behaviors as things to be corrected, they established a relationship with him and me. It made it more difficult when our insurance ran out and we could not qualify for services any longer. These ladies gave me hope and used words like “different” ways of processing and “every child developes at their own pace.” It was a nurturing and caring environment. Importantly, they too were encouraged that I wanted to be with Daniel for every session and that I asked them questions about his behaviors and why he did them.
I requested resources to do it at home. I had my doubts that I could help Daniel.
I even asked them do you think I can do this with him? Will I be able to help him? These ladies encouraged me and shared that they had no doubt that I could. They empowered me to believe in my abilities to know my son and to help him. I did not go into those therapies without knowledge. I had already researched every word and therapy the pediatrician had used and/or jotted down. I am not always able to help Daniel or Joshua. There are days when I am at a loss and I am perplexed by their behaviors. Why one day something works, but the next day it does not can make me feel flustered and lose my bearings. What if I have been doing it wrong the whole time!!
As you can see, I still had my doubts and I still do – always.
I think if I did not I would not be able to learn or challenge my own paradigms. “The first principle is that you must not fool yourself and you are the easiest person to fool.” ~ Richard P. Feynman. This holds as long as those doubts do not cause me to put all of my trust in others without any discernment. My doubts help me to have the wisdom to know when I have exhausted all of my knowledge and know when I need to ask for help. What I learned from them was not what I have read about when it comes to typical ABA methods, and I am grateful for that. They gave me positive approaches to look at my son and myself. They taught me and educated me – they believed in me and Daniel.
I felt more empowered by being validated by the psychologist who diagnosed me.
She validated many things for me. Gaining my diagnosis helped me to transition into fully embracing myself and empowered me to regain my voice. It had been distorted and confused with so many other voices that I was in a muddled hole reaching for a way out. Those voices still come – I have to work at quieting them. They ring their echoes every time someone misunderstands me or my actions. They come up and stab me with violence whenever I read negative perspectives about autism. They lurk about creeping and tickling at my ears whenever I cannot help Daniel or I feel too overwhelmed to handle life. However, what I realized through all of this was that in the face of invalidation and being stripped of feeling empowered, that I have been validating and empowering myself all along.
I would not have made it this far in my life if I had not.
I believe that goes for many of us. The world tries to make us feel weak, other people try to make us feel weak because of how they were made to feel weak or invalidated. Autism is not all sunshine and rainbows – some days I want my brain to stop. I want the intense emotions and anxieties to stop – my own and my children’s. However, during the most difficult of days I no longer feel hopeless. I have many answers and many times I know how to handle my situations in our ways that work best for us. I am validated and empowered in my decisions because I had people believe in me and trust my judgments, but mostly they confirmed that I was already capable.
I had people come along and drown out the voices of negativity and lead me to a path of ability – it will be a lifelong path.