Not Alone

November 24, 2023

We are all under one roof again. It feels good and right.

For eight days, we learned and navigated a system that was new for us. One we didn’t necessarily expect to use. A system intended to support and provide care. But can often also be intimidating, confusing, frustrating, maddening, broken.

Having worked in education for a long time, it’s a system I have heard about but never fully understood, never fully grasped without the insight that comes with first-hand experience.

We were so grateful to walk through the journey having a tiny bit of background knowledge and people we could call who have had experience with the system.

And even with people guiding us, helping us know what would come next, telling us what questions to ask, walking us through the process, checking in, it was still incredibly scary, uncertain, unsettling.

Many professionals in the system made assumptions that we understood what they were talking about. We didn’t. No one in the system told us how it would work. No one explained the steps. There was very little communication and when there was communication, it was often unclear, confusing, canned, rushed.

We know these professionals do this often and it is routine. But it was new for us. And it was terrifying.

We know so many people do not have the privileges of these kinds of connections.

So here are some things we didn’t know to help any who may face this in the future:

~ Ask all the questions. If you do not completely understand something, keep asking about it. Say, “I do not understand what you are telling me.” You are not stupid. You are processing a lot of things, probably very new things.

~ The CPEP process is long and intense. Count on at least 24 hours. Know that children are together with adults. Advocate to be with them as much as possible. You can ask for things to do with them during all the waiting - books, puzzles, coloring, fidgets.

~ If the next step is hospitalization, check the website of the hospital your child will go to. Read their policies closely. If they are allowed to have their own clothing, bring them clothing right away. If they are allowed their own hygiene products, bring them right away. This all makes a difference.

~ Learn what the visiting policies are. Visit as soon and as often as you can. Allow for all the feelings during them. Take their lead. If allowed, bring paper and a pencil to write down things they would like you to bring during the next visit (we learned this the hard way).

~ Bring notes and pictures from loved ones to each visit. Ask what other things you can bring. Some things we were able to bring were originally packaged gum, books, activity books, fidgets.

~ Advocate firmly and kindly for what your child needs. After asking multiple people and being told no, one person agreed to ask the doctor for an order to allow a stuffed animal and it was granted.

~ Allow and hold space for all the feelings. There will be fear and anger and grief and doubt and confusion and heartbreak and love. There is room for all of it. You don’t need to solve or fix or distract from it. Let it all flow and love each other through it.

~ Know that the system is broken. The professionals in the system will tell you that, too. There is a huge gap in support between weekly therapy and partial and full hospitalization options. There are no choices in between. The things you believe would be best will most likely not be an option. For now, you make the best decisions you can within the system we have. And later, you advocate for change where you can.

Thank you to everyone who has reached out, supporting us through this now and moving forward - we love and cherish you all!

We are grateful to have people who know this system who helped us and people who have personally experienced this system themselves or with a child who reached out. Just knowing we were not alone was such a gift.

And being able to share with a friend how I will never look at an ambulance without its lights on in the same way ever again and have her completely know what I meant brought comfort.

So for those in this place now or in the future, please know you can reach out anytime. I am not an expert. But I can listen and understand a little bit about what you are going through.

And if you have experienced this journey and would be willing to connect with someone going through it now or in the future, please let me know. I am happy to do a little connecting so we can all help each other.

We are stronger together. You are not alone.