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.