After the diagnosis.

There have been far few secrets here on Mommy Rhetoric about the rides we have been on with # 2 and her diagnosis in the fall last year. And every time I sit down to write about it since I wonder how much is too much. What should I share and what should I not. And I am constantly walking that fine line. There are readers of my blog that interact with my #2 in her every day life. I wonder…will they judge her? Will they judge me? Most of me doesn’t care because I am not ashamed and I wonder what I am teaching her by being quiet about it? To be ashamed, to be embarrassed. All of which I am not and I don’t want her to be.

The hardest part of her diagnosis for all of us was accepting her for who she is and to stop trying to mold her into who we want her to be. It is something that I know my guy and I have worked hard on. Amazingly, just the one of us that you would think would be less accepting isn’t, and the one is accepting is a surprise. That is my guy. He doesn’t care what others think of her, he doesn’t ever try and make her something she is not. Me. Well, I too struggle with my own “demons” in OCD. I know what life is like being different and oh how hard it is to come to terms with not being “normal”. A fight that is hard to sign your child up for even though you know there is no true normal in the world.

But I am proud of how far we have all come. The last 6 months have been spent figuring out what she needs from the world. That means from us, from her extended family, from teachers, from friends and from the world she interacts in. Instead of cowering behind diagnosis and letting that remain her reason to always opt out of the world we have placed the power back into her hands. We approach each situation giving her the appropriate opportunity to make the decision that works for her. Usually I end up extremely proud of the decisions she makes and when I am not all it really does is reveal to me areas we need to work.

An example is church. My girl loves church. She loves the way it makes her feel. She loves the sense of acceptance she gets there. The parts she doesn’t like, “Greeting time”, “children time” or the kid packet my church provides to those who have children who don’t attend children’s church. The benefit to her participating in church socially is so high that it provides such a fertile ground for us to work on the things she is weaker in. So we go every Sunday. And so far I have seen her participate in the first two of the three in her time and her choice. The last we haven’t accomplished but that is mostly cause I cannot figure out what her issue is with the kid packet. The first, greeting time,  it was she was worried that peoples hands would feel sticky. The second, children time, it was too much pressure to do what the other kids were doing and she was afraid they would sit too close to her and be too loud. The last I am guessing is the idea again back to something being sticky.

So we make strides, but I still always feel like she needs to wear a sign that says, “Hi, I am on the spectrum.” And sometimes I will pass out that info. But most of the time I realize the problem is more with the world and less with her. We all need to get better at accepting others for who they are and less of who we think or want them to be (myself included).  I have always been a fierce defender of that mentality and even more so since I have taught. People are people and it truly does take all kinds.

She has been in piano lessons for almost 7 months now and has made great strides and loves it. We did not tell her piano teacher her struggles because we decided early on she needed to see who she was and how she worked without our tainted opinion of how we thought she would be. It worked well. They begin working on ways to communicate together that were comfortable to #2. It was only last week I revealed to her that #2 is on the spectrum. A revelation that seemed to make it all click for the both of them at the same time.

A while ago while #2 was deep in therapy I made the comment it was her world, we all just lived in it. I meant it totally tongue and cheek. Now I would apply that same theory to our lives, but I would say it with much more sensitivity and way more understanding. It is her world. It is my job as her mother to help her navigate it without my own hardships and unreachable expectations being brought to the table.

I can tell you a few way things have gotten easier for my family when it comes to this. I joined a support group and it has connected me with multitudes of resources, many supportive people who know what we go through daily and a better understanding of what it is we face for her and her life. The second is I stopped making excuses for her because nothing she does it wrong just because society says it may be. She is her. I have to accept her. It isn’t always easy, but if Momma can’t do it, who can? We have learned to voice when we have had enough. It isn’t always easy. We don’t always love it.But we have all gotten better at realizing when we need a “break”. We are better for her if we can identify those moments especially when one of her hardest battles is saying when she has had too much.

The good news is we all survived and are surviving. I am grateful for the beauty it has brought me in my life. I am now way more tolerant to what is different and I embrace difference.

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3 thoughts on “After the diagnosis.

  1. Your #2 is a wonderful little girl. She gets along beautifully with everyone. I saw her mature and grow so much during the year. She became much more confident and comfortable to ask questions when she was unsure about a situation. She is going to grow up and do great things one day.

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