The shock of a New Diagnosis
A few weeks ago, someone I didn’t know was about to become a dear friend told me her middle schooler received a diagnosis of ASD. I am so glad that now she has an explanation for some behaviors she was perplexed about, but understandably, now she has a lot to process. It got me thinking about some of the things I wish someone had told me those first few weeks. There’s a lot I’d want to say right off, but it would be easy to overwhelm someone new to this whole life. So I’ve chosen 3 things you need to do right away, 3 things to do as soon as humanly possible, and 3 things you need to do when you’re ready.
What to do right away
Just Breathe
It’s all going to be ok. Nothing has changed since the day before you got the diagnosis. Not really. You have a label to give things, and some answers, but for every answer, there’s a question. You don’t have to have it all figured out all at once. Stay off the internet (with some specific exceptions), stay off Pinterest, stay off the Facebook groups (just for a little while) and give yourself some space.
Give yourself permission to grieve
Depending on the severity of the diagnosis, this will happen in varying degrees. Grief is a valid emotion for lots of different life events, not just death. Grief is also a process. You’ll go through all the stages once you get the diagnosis, and not just once. A friend of mine with a special needs child who is now an adult told me once that you’ll grieve several times over the course of your child’s life. Allow yourself to grieve for the life you thought you’d have, for what your dreams for your child were, and any number of other things, but grieve. You’re allowed.
Don’t be extra
I know “extra” is a popular slang term right now, but it’s appropriate here. For now, don’t try to do anything extra. Don’t plan a complex vacation, don’t try to start a new job (if you can help it), don’t offer to plan your family reunion, just don’t. Go to work, get the kids to school, go to church (whatever you do, keep going to church), get people fed by any means necessary, but keep it simple. Chances are, your life was already such that you didn’t do much extra stuff, but especially if you have neuro-typical kids, maintain the status quo. Your friends and coworkers will have to understand.
Next Steps
Now, you may not feel like you’ve got your balance yet and that’s ok, but here are some things you need to do as soon as you can manage it. You really don’t want to put this off until you’re “ready”. The sooner the better, rip off the bandaid, whatever you need to tell yourself to get this stuff done.
Apply for Medicaid/SSI if you are eligible
In our state, there are two types of Medicaid, one for families who are in need of financial help based on income, and another for families of children with disabilities, regardless of income. Every state has different programs and requirements. If you don’t qualify for Medicaid, see if you qualify for SSI benefits. The applications are long and rarely straightforward. But the processing times can be months long, and some therapy providers will only work with Medicaid patients. And you DO NOT want to be trying to pay for therapy out of pocket. Depending on how you got your diagnosis, you should be able to have someone who can at least tell you where to start. For the twins, we had our Early Interventionist who was more than happy to chime in when it came time for X-man, but we also had his pediatrician. We also have a non-profit in our state that provides support to families of children with disabilities. They have a person whose sole purpose is to help fill out Medicaid applications. This is one of the internet exceptions I referred to earlier. You may have to do some Googling, but there’s help out there for these things.
Edit 2/28/20: Since I wrote this post, we have tried relocating away from the state where we live, and it’s been impossible. The waiting lists for Medicaid waivers in most states are absurd. At this point, all I can recommend is to talk to your state agencies and see what your child may qualify for. Some waiting lists are shorter than others, but there are always waiting lists.
Tell your family
Only you know what your family dynamic is. Use your discretion. But it’s only fair to let your loved ones in on your situation, especially if they are in a caretaking role involving your child with special needs. Their lives will change, too. I know my parents will tell anybody that their lives took a whole new direction when I told them that all three of their grandsons had autism. They grieved, they struggled, they adapted, and they are still fantastic grandparents. Not everyone will be as blessed as we are. They still deserve to know and to have the chance to bless and be blessed by your child. What happens afterward has too many variables to predict, but you’ll always know you did the right thing.
Find someone to talk to
It would be nice if you already had a friend who is a special needs parent. If you do, that’s great. Go talk to them, as soon as you can. In general, we are a very supportive group of people, ready to let you cry and rage and question. If you don’t already have a person like that in your life, go to whichever friend knows you best and tell them what’s going on. If they’re worth their salt as a friend, they will listen and love you and ask what they can do to help, even if they don’t fully understand what’s going on. But you need someone to talk to. Other parents of special needs kids will show up in your life. You can’t avoid it. But you can’t wait for that to happen before you talk to someone.
When You’re Ready…
There’s not really a hard and fast rule for when these next three things need to be done, but they do need to be done at some point.
Find a counselor
Hopefully, you have a wonderful network of friends who love you and support you, and that’s terrific. But there are some things that you need objectivity on. You’ll need help navigating your marriage because that dynamic will change. You will need support through your grief, as many times as you go through it. You’ll also need advice on parenting because parenting special needs kids is parenting on steroids. And you MAY need medication to help cope with all the stress and THAT’S OK. It doesn’t mean you’re weak, it means you’re going through a rough time and you need some help. But your family needs you, so do what you have to do. I have a standing order from my OB/GYN that if it ever gets to be too much, all I have to do is call and she’ll send something to the pharmacy pronto. As of yet, I haven’t needed it, but I think that’s because I know the offer is there if necessary. Get the professional support YOU need.
Find a support group of parents that have a child with a similar disability
You may have one at church, or through your local advocacy non-profit, and that’s awesome. There’s a ton of great parent support groups on Facebook. Run a search and I’m sure you’ll come up with at least one. The only reason I don’t advocate this as one of the first things to do is that they can be overwhelming. Be sure, with any group that you join, that you are getting from it what you need, and that you don’t let the group bring you down. I joined a bunch of groups right away and ended up being overwhelmed with everyone else’s problems. I realized that for my own sake, I needed to step back and not try to project everyone else’s situation onto mine. Set your boundaries and keep them strong. If you’d like a place to start, I have created a Facebook group called “A Break from the Chaos” that I am hoping will be a place for parents to connect with each other to provide support and encouragement.
Find (or stay in) a church
Preferably one with a disability ministry, but if you already have a church home, give them the chance to support your family. You may have to do some training but stick with it. Most families with special needs kids don’t even try to go to church (that’s a whole separate post), but you are not excused from your responsibility to “train up your child in the way he/she should go.” If you meet resistance from your current church (and it happens more than I’d care to admit), don’t give up on the whole idea. There are many out there with dedicated disability ministries who are very welcoming. You just have to find the right match. Again, stick with it. The only reason I don’t mention this as a thing to do right away is that you may have a period of time where the logistics of going to church might overwhelm you. It’s ok to try to find some equilibrium first. And it may take some time for your church to come up with the necessary resources in personnel to enable you to go. But don’t let that adjustment time last too long. The longer you stay away, the harder it will be to go back.
It’s going to be OK
There are so many other things I would want to say to someone just starting this journey. But one overarching theme I would hope you can take away from this post is that you are loved, you aren’t alone, and you are enough. Write it on a bunch of sticky notes and post them all over your house and in your car. Let it be your mantra. To quote the end of Mrs. Doubtfire, “All my love to you, poppet. You’re going to be ok.”
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