I see acceptance as coming to an agreement. It is like going to a meeting of the minds and everyone walking out on the same page with the same purpose and goals for the future. As much as I’d like to say I am there, I am not, at least not yet. I have had some meetings, but I have never walked out with the same purpose, I merely walked out glad to have the meeting over with. Many of these meeting took place in my head and only Me, Myself and I attended, and we still did not agree!
To get to acceptance, you must first encounter other emotions, or stages. I’m not sure I ever truly went through shock and denial or any of the other well known stages of grief. I think I went through my own SPD, Sensory Parenting Discovery stages.
My first stage was the Maybe stage. “ Maybe my child is a bit different”, “maybe he is more active”, “maybe this school is not working for him”, “maybe with some therapy he can fit in”, “maybe if we just understood him more”. “Maybe I’m crazy”, or even better, “maybe they (the school system) are crazy and too institutionalized”. This stage also included, “maybe he has a disorder” and he was then diagnosed with one, Sensory Processing Disorder. Maybe is a good stage, it is a stage of questioning yourself and your child’s needs, and the priority of those needs.
After I questioned my sanity, though this tends to be ongoing, my next stage was the Gathering stage. I gathered information from every angle, and asked questions from everyone. I was open with the other mothers of my son’s classmates and asked them their opinions. I got a lot of support and feedback. Then I went on to picking the brain of our OT, and then to websites and books. I connected with a researcher at the local University and signed our son up for a study, which yielded more information. I even attended conferences. Some paths took me into vast areas of more information, though somehow I also narrowed our son’s issues at the same time. The information is overwhelming, and at some point I blended to the next stage.
This next stage is more like a spectrum. I find that I am in the extreme end of the spectrum, where a few parents tread, but strong are we. Even our son’s OT said, “Cat, not every parent is like you”. I’ve thought about that for nearly a year since it has been said to me. Why aren’t more parents like me? Why don’t we fight the world for fairness for our kids? Advocacy, the spectrum, is the positive swing towards acceptance. Advocacy could be getting your spouse to be on board and understand, or family members. It could be getting teachers to understand and take an active role in helping with needs the classroom. For me, it suddenly and abruptly became a personal cause.
My own advocacy? I started writing where people would read my message and talking where people would listen, I became involved with the SPD Foundation and fundraisers. Writing was a skill I had not found until I started this journey. The feedback was encouraging and in writing I found peace amongst the war and torment of trying to advocate for the needs of my child. The ability to write is my silver lining in the angry storm that is advocacy.
Anger is a useful tool when it empowers you. It is also draining and can create depression, pain, guilt and loneliness. Or is it the other way around? Either way the fire I had in my belly I used to start many of my days. When I looked at my child and his abilities, it pushed me to help others see it too. I used it to discount attitudes that labeled my child as a behavior problem; I stood up for him and defended him (and those with Sensory issues). We got the school to take a second look at how they were handling behavior modification, even if it was just one child. My anger might lessen someone else’s pain that might come after me. I know that each time I walk a path, there will be someone who comes behind me and traces my steps and the path becomes well worn for those who come behind them. I wanted to turn my anger into healthy attitudes of diversity.
Since our son’s SPD is not an illness that can be cured, it is a neurological disorder, he needs compassion and understanding, and possibly, a change in attitude. Change would be the next stage. Based on the books, advice, and therapy we made changes in environment and day to day living so as to minimize excessive sensory incompatibility. We also maximized sensory sustainability with modifications to our home, our routines and our expectations. Changes were made in the classroom and to our son’s daily classroom goals. Changes are part acceptance and part advocacy, and mostly good.
The biggest change came when we decided to look for another school. We were looking for a change in attitude, environment and overall . . . Acceptance. Somehow I needed other people’s acceptance to foster my own acceptance. I needed to know that we can find the resolution, go to the meeting of the minds and walk out with the same goals and purpose, walk out with acceptance. We think we have found such a place, and my own acceptance is on the verge of immersion. I am optimistic and try to convey to our son that he can look forward to enjoying school.
I am continually making Progress. I take with me hope and inspiration to press upon everyone I met that people, and mostly young people, need to be accepted for their abilities, not their disabilities. It is through diversity that we can grow stronger as a human race. I also am teaching our son how to accept himself. He will be an adult some day, the world will not bend because his has issues, we all do. He will need to Empower himself with knowledge and skills to handle situations and the future. The skills he will need depend on his sensory needs. We know he has Sensory Processing problems, so along with making changes, we also empower him with the same information we give the teachers. Now and in the future he can be responsible for adjusting himself or his surroundings as to optimize his learning environment and increase his own potentials. We teach him to advocate for himself and make changes and gather information and question rules.
He will have a lifetime of learning; the world will change, as will he. Some day he might also need to find acceptance and he will also need to go through his own stages. My own Sensory Parenting Discovery was a process of stages; Maybe, Gathering, Advocacy, and Change, obtaining Acceptance always Progress and Empower myself and my child. And above all, Enjoy. Enjoy the journey, enjoy the child, enjoy your life and enjoy that you will be stronger because of your experience.
I don’t wish pain on anyone, though I know I can support another’s journey to acceptance. No matter what stages they travel, we all can share our paths for those to come after us and join us in the end.
“Your job is to take the world apart and put it back together again, but even better” ?- Rob Ryan
Author and SPD Advocate
Mom to 2 beautiful and diversely creative boys, and wife to a husband who is my sensory sustenance!