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Why do you post conversations?

I don’t prioritize full length blogs the way that I would love to, but I do post snippets and conversations of our life over at Facebook at all the time.

Why?

Because the internet is still filled with stories about how disability = unable, how “non-verbal” = nothing to say… One such story posted on HONY today, a story I tried to give the benefit of the doubt when a friend messaged me about it. Except that she was right, and I was wrong. We cannot give those stories the benefit of the doubt. We don’t have the privilege, not when the mainstream story is still that reading books and learning is a pipe dream for the majority of our kids.

I share these conversations because I want to show the world — and many parents — how much their child can do, right now, as their child is. We didn’t “uncover” Diva. She wasn’t “hidden inside”. She is just herself. She has multiple disabilities. She learns differently. She is impacted both by her disability and by the way society treats her. One of those things can be changed.

Diva has conversations with us using single words and telegraphic speech. She uses signs, body language, AAC, and vocalizations. Sometimes she goes all day only talking about Diego & The Wolf Pup Rescue. Sometimes we go a long time with her ignoring us and hanging out in her room. All of those conversations can — and should — be respected and valued just as much as any conversation with past tense and contractions. Her conversations are shared because you need to know that your child can do this too.

Little Man sees the world through a completely different lens than the neurotypical child. He struggles with the gray areas of thinking and problem-solving, but he also is creative. He struggles with abstraction and social norms, but he also has a big heart for friendship and kindness. He struggles to understand jokes, but he also loves to be silly as he recently told his aunt. None of these things are not mutually exclusive. His conversations are shared because you need to know your child can do this too.

I don’t want their lives to be inspiration porn. I don’t want people to read a conversation and think that Diva has “overcome”. Overcoming is crap. The only thing she has to overcome is this world’ stupid projections on her, and I don’t think that’s fair. I’d rather tear those projections down than force her to fight against them. My biggest hope for each of my children’s lives is simply that they will be seen and loved without feeling a need for pretense or hiding. Isn’t that what we want for every child?

The true story is that there is value in their way of thinking, being, and interacting in the world, without a need to become more neurotypical. In fact, I don’t want them to be more neurotypical. Their value is being who they are as they are, just as my value or yours is made. And so I write. I share the everyday moments of our lives. And I hope that every child with a disability will know the same things — that their voice is heard and that they are seen.

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On faith.

When I first became a parent, I don’t know that I had any sort of storehouse of faith. I had spirit. I had questions. I had doubt. I don’t think that I had much faith. Many of my practices had fallen by the wayside — yoga, meditation, daily readings, journaling… And, well, if they hadn’t already fallen, they quick crumbled in the rough stuff of the first few months.

I discovered, though, that this is too hard without faith. There are too many decisions that have to be made, questions to answer, second-guessing and kicking myself. The ideal of balance is so far beyond reach that adding it into the list would have been like throwing a flaming bowling pin into my juggling set. Read: disaster, and a bit scary.

I tried to keep doing it alone. Somewhere in my son’s second hospitalization, I finally realized the complete and utter impossibility of the task. Sure, I could hold it together on my own, but I could also collapse on my own. And it wouldn’t be that far into the future. It was sort of already happening.

It’s not that my son or my daughter are so hard that I have to turn to God and faith to parent them. It’s that parenting is so hard. There is this massive over-flowing of love, a deep desire to make the right choices, rising up within you, while you stand amidst a culture of isolation and mommy wars. There is the reality of seeing that, while the arc of the world may bend towards justice, complete justice is not yet here, and your child is alienated, mocked, and misunderstood.

So there were two paths, two choices. The first is the one of anger. It is the path of accuse first, listen never. It is the path that leads to raised voices in IEP meetings, seeing the only solution as lawyering up, finding only the flaws in therapists and doctors and treatments. There’s an endless stream of therapies, doctor-hopping, diagnosis-shopping. You’re mad. You’re mad at the world that doesn’t get your child. You’re mad at the world that doesn’t support either of you. You think that this battle, this meeting, this doctor will be the place where your questions are answered, your fears are heard, and your child is seen. Until it’s not. So you keep twirling yourself up and up and up… You have faith, alright, but it is faith in your ability to change things through sheer force of will and personality.

Yeah, I did that. It’s an understandable path. There is a righteous anger. The thing is, though, that path is exhausting. There is no rejuvenation. There is only tiredness. Loneliness.

So, in the middle of that second hospitalization, I realized that I needed to find another way. I needed to act still, of course, because it is our slow and steady acts that help bend that arc faster and faster. I couldn’t place my faith in my actions alone anymore, though. I couldn’t. I would burn up doing so.

I turned back to faith, filled with questions and doubts and wondering, but also filled with the hope that I am not alone. I prayed. I read. I prayed some more. I prayed for wisdom, for partners, and – most of all – peace. Peace with my decisions. Peace with the outcome. Peace with our teams. Peace with all the unknown things in our life — where our kids will be in five years or ten, what exactly is happening when LM sees snakes, or how to make this whole thing easier for everyone. I prayed for release from the junk.

I don’t know how to do this journey without faith that we are being held and guided. I don’t know. I am so grateful for the kinder heart and softer ways that have come for me. I hope that everyone in this journey can find faith — in something. It could be faith in family, in friendship, or community. It could be faith that the trees will continue to grow and that every night the stars will shine. It can be faith in your Love, in the steadfastness with which you shine your heart. It could be faith in anything and everything, but it can’t just be in yourself. I mean, absolutely, please, please have faith in yourself. I hope, though, that you can also find faith in other places, faith that will buoy you and carry you through when the faith in yourself seems dark and dim and far away. Faith that will sail your family and yourself through all the storms.

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Dear friend.

I have several friends who are facing some tough struggles within their families right now — decisions about medication, about schooling, about hospitalizations, about residential treatment center… These decisions suck. They fill you with so much uncertainty and doubt. You want so badly to do the right thing by your child, but the path is almost always murky and gray. There is no flashing neon sign that says “TURN LEFT HERE”. All you want is for your child to be able to feel okay in the world, to feel safe; not being able to fill that basic need is terrifying in itself.

We’ve been there. We’ve done it, we’re doing it, and we will have to do it again. Below are all the things that dear friends and family members said to me, and what I want to share with you at this time when your heart feels as though it may break.

  • This is not a failure. This is a choice to support your child. This is a choice to try something new. This is what parenting is about — making the hard choices, choices that no one wants to make, in order for your child to taste the joys that are in life. You did not screw up. Your child did not screw up. Rest easy, and know that you & your child are both doing the best that you can in a world that has sadly been created for the able, while ignoring all the rest of us.
  • Your child is still a person. So much of what we read in the news is about how hard/dangerous our kids are. We live in a world where people with disabilities are portrayed as lazy, ignorant, or worthless. We live in a world where mental illness is hush-hush or associated with gun rampages. This is not the truth of disability or mental illness. You know your child. You know that they are so much more complex than any one label or adjective. You know that your child is charming and funny. You know the times your child brought you flowers, a handprint painting from school, or cried because the movie ended so sadly. You know your child’s heart. Your child is doing the best they can in a world that does not appreciate or accommodate their unique needs. Don’t let these decisions steal this sweet love and truth from you.
  • There is no shame here. Please don’t stop talking about your child. Stigma in this country is so high. We cooperate with this stigma by disappearing our children from our conversations and our lives. We support this ableism each time we hide our children, telling everyone it is fine or avoiding a longed-for playdate for fear of a meltdown. This is crap. Talk about your child. Talk about your pride and your challenges. Talk about what they are experiencing. Remember, your child is a person and they are listening. They are watching. What are your actions & your words saying about their existence? Their neurology, their very being? Don’t let it be shame.
  • Tell us what you need. We don’t talk about these things in this country, still, even in the 21st century. Maybe to make a joke (ugh). That means that all the people you love — they won’t know what to do. They don’t know how to ask about a 6 year old who is an inpatient at a psychiatric hospital. They don’t know how to ask about a 9 year old who lives at an RTC facility. They love you, they really do. They don’t know how to make it better. Tell them. Speak to your needs. Say, “I need you to visit my son on Tuesday at noon” or “it would be so helpful if you could pick up some milk & bread for me”. Reach out, please.
  • It’s okay to be afraid. These things are hard. Fear is normal. Anxiety is normal. Stomach-clenching nausea, fatigue, and tears — all normal. Please don’t feel bad about experiencing these things and add more guilt to the pile we know we are already swimming in.
  • Find others who have been there, done that. I don’t know how I could have managed this past eighteen months if I didn’t have a rock-solid support systems. I have moms who have done everything in my village — RTC, refusing RTC, hospitals, juvenile detention, military school, crisis programs, alternative treatments, single parenting, adoptive parenting… Each time my village expands, my own wisdom and heart expands. I can carry on with love, even when exhausted, because of the rock-solid foundation that they give me. Look around — find a group on Facebook, look for message boards, contact non-profits, show up at support groups, reach out to NAMI or ASA or whatever might be in your area. Even one parent who has been there can change your world.
  • There is no “point of no return”. You can always change your course. You can try a different medication, or wean off them all together. You can visit a different doctor. You can experience the hospital once and decide that you won’t use that strategy again. You can even say “enough” of RTC. There’s no permanency here. You can always change paths. You make mistakes, you slip up, you try things out, you learn. You get better at this game.
  • It will be okay. It will. There will be a light, one day. I don’t know how long it will take to see it. I don’t know where it is. I do know that it is made out of love. It is made of the love you and your child share. It is made out of the moments when you both connect, when you see them, as they are, and accept them, fully. Things may or may not get better in the standard sense. We still have hard days and hard weeks and hard months. By all of the world’s standards, our life is hard. Here’s the secret they don’t know — it’s also filled with so much heart expanding love. It’s filled with the kind of unconditional love that has been through the fire and back. It’s filled with the expanded perception that comes with seeing that everyone, everyone has gifts and talents to offer. I know that, right now, in this crisis, it can be hard to remember. I promise the moments will come again, in drops and trickles and then waves. The waves will overtake you, and you will laugh, and you will know that everything will be okay.

My family is thinking of your family. We are holding you in our hearts, and wishing for peace. We want only for you all to feel that you are able to be you, fully and completely, engaged, achieving the life that you want. We will all get there, step-by-step, hand-in-hand.

With love.