Friday, November 3, 2017

Iron mom

I have vivid memories of the parents and caregivers of those with special needs. Starting from elementary school, with the teaching aids and parents of the children that were in class with me; later it would be as a young adult where I helped run programs that included special needs adults. There's always been two camps these people fall in: either clueless and not caring (these were few and far between) or some of the most incredible human beings I've had the pleasure of knowing. It's the latter camp that has made an impression: kindness and patience abound when working or caring for the special needs individual, combined with a firmness for advocating what is needed and a strong set of problem solving skills. These individuals have always left me in total awe, but also with a sense that there is no way I could do what they do daily as I lack so many of these qualities.

I'm not a patient person. I'm also not overly kind. I struggle with daily interactions with most people, failing to assert myself and my own boundaries in a constructive manner, which usually results in me either swallowing hurt or coming across as being an asshole. I lack grace in conflict and skill to navigate delicate matters.

The problem is, I need to somehow master all the above in order to move forward. She-Beat needs me to in order to make this transition and get her the help she needs. And hence a major reason I've been in a constant state of tears for the last 24 hours as I'm convinced I'm going to fail my daughter.

Yesterday I blew off work in order to hunt for new schools, fill out paperwork and to contact the Beats' current daycare to request a meeting. Like a chickenshit, I avoided talking with the director when she immediately demanded a meeting as I was convinced it would only result in a screaming match. I also began contacting family to let them know what was happening. My aunt and uncle were amazing (see above description for why), but my MIL wasn't happy about the news or the decision to pursue services, suggesting that maybe it would be much better if we waited to see. I spent most of this morning's commute hiding behind sunglasses and staring out the window as those silence tears fell, feeling utterly ashamed with myself.

This isn't the first time these feelings have surfaced. While in the thick of infertility and loss, I regularly had similar thoughts as my inadequacy as a human was the reason I wasn't able to conceive. I know what so many are going to say ("Why?" "It's not true!" etc, etc), but the truth is that having spent years where my self-identity has been so negative, it's hard not to come to these conclusions when faced with them. The problem is now I have to counter them and fit myself into a role that I had previously determined I could never do.

In a world of Dragon moms and Tiger moms, I have to figure out the path of a special needs caregiver. Somehow I have to figure out how to be patient in the face of frustration, to show kindness when feeling the exact opposite. I have to figure out how to assert unapologetically for what is needed while also doing so in a way that opens doors and builds bridges. I have to become skilled at finding the light, even when things seem so dark. And though I have some amazing role models, both in this community as well as in real life, the truth is I don't know where to begin to make this transition. I don't know how to recover when I make mistakes as it's not me that's on the line.

In short, I'm afraid I don't have what it takes to be an Iron mom. To protect my daughter and help her move beyond so that she can grow to her full potential. And that She-Beat will be further harmed because of it.

7 comments:

  1. I just want to give you a big hug.

    Here's a by-product of what this diagnosis may mean to you: you will grow. In a different way and on a different timetable than moms of neurotypical kids, you will have to discern what is true about you and what is patterned thinking about your worth and abilities.

    Because centering on those is a luxury. Trust that you are a good person (of course you are!) who has a moral center and the ability to get things done (um, I mean, you earned a freakin PhD and endured infertility). Whenever you start to feel sad or lacking about yourself, refocus instead on your child.

    You can do this. I have no doubt. I see how capable and unstoppable you are, how you can move mountains for your loved ones. I know that as you keep on trucking that you will see it soon too.

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  2. Hey, sorry that you continue to walk a tough road. I’ve worked with special needs youth for several years; I’m guessing more severe diagnoses than She-beat, but I’m speculating: I don’t know the details obviously. I don’t have direct experience with a parent in your position as my students are much older and their parents have worked through these feelings already (more or less). Again I hope you can build bridges with people that are in your shoes because community is VERY important, both for you and your child. But for what it’s worth, a few insights from my experience. Maybe they are not useful now, but will be later.

    -children with special needs need the same things everybody else does: love, community, friendship, autonomy, mastery. They might get there by a different route though and often need extra support and advocacy.
    -you (and husband) are your child’s chief advocates but don’t get into a situation where you become the only one who can understand or relate to your child. She needs to learn to get along with lots of different people (again, same as all of us) and will need other mentors and advocates in her life (as all of us move beyond our parents)
    -parental guilt is a reality: but the situation is unlikely your fault in any way and don’t let those feelings get in the way of teaching your child responsibility for her life and choices. Probably the best thing you can do overall.
    -having a child with special needs is tough on a relationship. Take care of yours (starting with care for yourself).
    -there are strategies for surviving your day and strategies for making yours and your child’s life better. I see lots of families with the first kind but not do so much the second kind. You need the second kind though. If you don’t know where to start....get help. I hope there are resources for you as nobody....I repeat nobody....can do this all on their own.

    I’m rooting for you and She Beat. Relentlessly.

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  3. Hey lady, don’t be so hard on yourself. Do you think the special needs moms became Iron women in a day after learning of their kids’ diagnosis? I’m guessing no, so give yourself a break. You are still processing the news and it is something new. You may fail but learn from your mistakes and learn from others before you. I would agree that joining a FB or similar group that could help you navigate would be super helpful.

    Not sure if you have the opportunity to see a counselor who could help you process your feelings... I know that it is daunting but remember that this is a marathon, not a sprint!

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  4. You already are an Iron Mom in my books. Hang in there. This will all sort itself out in time (I agree with NSC above, it's all new & daunting, so please don't be too hard on yourself). Mega(((((hugs))))) to you.

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  5. You are already an Iron Mom just by virtue of having the Beats. Those of us parenting after infertility are doing so because we are the women/moms/people who make things happen. You. Make. Things. Happen. This is different but also not. You’ve made this life and you will continue to make it, step by step, because that’s the kind of person you are even when you don’t feel that way. You’ve got this.

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  6. It's hard to have such a major upheaval in the face of everything else you've got going on in life. I'm sorry your MIL wasn't more supportive and hope your aunt and uncle can give you a safe space to feel and work out this new role. Advocacy is a learned skill. It won't happen immediately and it will take practice, but your love for your daughter and determination will get you a long way.

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  7. These are amazing comments with so much good in them. I am thinking of you, and I agree that you in my mind are ALREADY an Iron Mom. You fight for your kids all the time, you navigate your family and protect them from harm. I agree that no one becomes an amazing mom of a child with special needs overnight -- it's overwhelming and there's so much to learn and adjust to. Can you find a support group? When you find the right program for She-Beat, maybe there is a PTSA you can join to get together with other moms who can help you, and be another community for you? Just like infertility, navigating special education is an experience where having support is everything. There are a lot of online resources for parents in navigating the IEP process, your rights, working with the school, finding outside support, etc. Advocacy centers can be so helpful. I don't know if this organization is helpful for your particular diagnosis, and it's local to me, but there are similar organizations near you I'm sure: http://www.starbridgeinc.org/
    I hope you get the support that you need. You can do this. It is a shift, and life keeps throwing you curveballs, but you are a warrior for sure and you will figure this out, even though it's scary and everything else makes it seem to yourself like you are deficient somehow or lacking in necessary requirements. You can do it. I have faith in you. So much love!

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