CB is 4 years old …
To fix or to help? What is the difference? How does each perspective help or hurt our outlook as a parent?
This thought keeps surfacing in my thoughts when I am researching new things and different angles to help diagnose or to try with my son. I think as a parent of a child with special needs and no definite answers as to why my child has these special needs, I can’t help but wonder whether I can find that silver bullet to help obliterate all the fog barriers, digestive issues, motor planning issues, visual and auditory issues, slow-processing issues, vitamin deficiencies, and other sensory issues. I am the kind of person that likes to fix things. I have to remind myself to not try to solve other people’s problems, but to just listen. I am programmed to see a problem or issue and want to fix it. When we think of our children and the problems they face, I think it is only natural to want to make their lives easier and to help make this world a less scary place. You don’t’ want them to get bullied, labeled or short-handed, but at what point does it become healthier to change the perspective? If I say the words ” I want to fix my child”, it sounds horrible like I feel he is broken. I honestly don’t feel he is broken but I know he is not neurotypical. His brain works differently than others. This brings challenges but good things, as well. It is sometimes hard to see the good things through all the evaluations, struggles and frustration. It seems like all the less positive things are in your face rearing their not so pretty selves tempting you to put your focus, time and energy on them. These things are identified as things that can hold a child back, impact their self-confidence or make them more of a target for bullying, and/or potentially be a challenge. For most of CB’s life, I think I get wrapped up in all of this because it gives me hope. Hope that one day he will be neurotypical, self-confident and able to say “yes” to life. I want where he does not automatically say “no” or “stop it” because 1) he automatically doubts his abilities, 2) he sees it as a threat to himself, 3) he does not trust that the requester’s request is in his best interest, 4) he feels it makes him uncomfortable, or 5) he feels it will stifle him. Now it isn’t like my 4 year old necessarily has a clue as to whether something will make him feel stifled but I think he has a vague sense of what it means to feel controlled, limited and to not be himself.
So many thoughts are going through my mind and I cant even write it fast enough or organize it as you can see from my constant tangents. “I feel I am not close enough to my son”, “Does he trust me to love him, protect him and to let him be him?”, “Are our choices limiting him versus allowing him to flourish and really be him?” This is at the heart of why the thoughts of ‘fixing him’ is bad. Who wants to be fixed? Who wants to feel like they are someone that needs fixing? Am I sending out these energies or feelings to him? I think so. I think he knows I almost always have an agenda when we play. I am almost always trying to incorporate therapy whether it be speech, fine motor, or gross motor. I see our interactions as ways to provide therapy and as a way to get my helping agenda across. How do I transition to coming from a place of love, support, encouragement, acknowledgement and growth? I am here to love, guide, encourage and to help him grow. I feel I am not enough without the studies, research, therapies, and guidelines. I do not have what I need to be the parent CB needs. It is easy to get lost and wrapped up in this journey. It is unfortunately easy to get weighed down. How does one remain light, happy, helpful, resourceful, encouraging, and enough? How do you move past the idea of fixing and instead focus on accepting. Accepting where my child is and where he has come from? Accepting that we don’t know where our child will end up. How can I reshape my perspective without giving up hope and without feeling I am not missing something? How can I be more? I have mentioned to my husband several times recently that we need to get used to the idea that CB’s struggles will remain and that nutrition changes and other interventions will not ‘fix’ him. I tell him that they hopefully will just remove the fog and to help him reach his potential. I think I am telling him this with the hope that it will make it easier for me to accept it. But it comes back to the thought that if I accept it then am I limiting my son and not believing he can be more? I know I am his best advocate and I need and must fight for him. How do you accept but keep high expectations? I don’t want him to feel we ever didn’t believe in him. I feel a little inside that by changing my perspective, I am somehow giving up a little. Obviously, this is not a black and white issue. I think I personally need more time to work through this and to form my best perspective for me and my son.
Glowing Glances: 1) CB swam without any assistance underwater for 10 feet. The furthest in the class, btw :). CB showed a lot of exuberance and energy in class. He really enjoys his swim class and seems to really jump in full force. The class allows him to just be himself. 2) CB is responding better to the phrase, borrowed from a Daniel Tiger episode, “He can take a turn and then you get it back.”
Promising Progress: CB is spontaneously putting 4 & 5 word utterances together (on occasion)