That’s the question we’ve been hearing a lot since last Wednesday… and one we’ve been asking ourselves. It’s a heavy question – there’s no clean and simple answer. We’ve been finding ourselves saying something like this, “We don’t really know… just one day at a time and one step at a time.”
We left the doctor’s office feeling completely overwhelmed. He handed me a list of things we needed to do. It’s not a short list. But then he said something that lifted a huge burden off me, “You don’t need to do all of this right now. It’s okay if it takes you a couple months. Just do one thing at a time as you’re able.” I could’ve hugged him.
Mareto has been diagnosed with Autism. Autism is called ASD which stands for Autism Spectrum Disorder. This means that children with autism can be anywhere on the spectrum. Our Mareto falls in the middle. He’s a pretty classic case and displays almost all the typical signs. However he shows a lot of potential so there’s room for much hope for his future. Mareto has also been diagnosed with a Sensory Integration Disorder (very common for children with ASD) and significant developmental delays.
Right now we have a few goals we feel are the most important to accomplish asap:
- Get our insurance figured out (hah!) and apply for the EDCD waiver which will cover all of Mareto’s therapy and services and SO MUCH MORE. We’ve been paying out of pocket for everything so far and it’s bleeding our bank account dry. We’ve had to turn down therapies simply because we couldn’t afford it. This waiver is top priority.
- Assemble Mareto’s team. His team right now consists of us (Daddy and Mama), his new doctor who we love, and his speech/feeding therapist. We need to add on his occupational therapist (we’ve already figured out who we believe is the best match for him, so now it’s just a matter of getting him into her rotation) and we need to find a good ABA therapist. We’d love to have the team assembled and have a good routine in place before Arsema comes home… so speediness is needed!
- Get Mareto fitted with his Project Lifesaver bracelet. He’s quick and has no fear. He’s run into the street a few times before we could grab him. He also has no problem wondering off, but then gets very upset when he realizes he’s alone. But he also can’t communicate to let someone know he lost his Mama. Let’s just be perfectly honest here too – even if someone did try to help him find me they wouldn’t be looking for the blonde white girl… so we’ve just added another layer of difficulty. My prayer is that we will never need to call 911 and have his bracelet tracked. But I can’t predict the future so we feel it’s better to have it and not need to use it, than to not have it and find ourselves in need of it someday.
There are plenty of other things on the agenda as we’re able to handle it. Lot’s of education… we’ve already been given a couple of books to get started on and we do read through them when we’re able. But right now we have a lot to take in and I am pretty overwhelmed. I know down the road I’ll be able to (and probably desire) lots of tips and resources, but right now I’m already buried under a pile of information that I don’t fully understand. So please don’t be hurt if I don’t take all of your advice or suggestions right away.
(laying on the couch with a new chew tube watching Curious George)
The other question we’ve been asked is “What can I do? How can we help?” and again my answer is almost always, “I don’t know.” I really don’t right now. We’re still trying to figure out what we need to do so it’s difficult to know what others can do. I’ve tried to think of what will be helpful right now…
- Prayer – please pray for Mareto and for us. We need it.
- Grace and understanding – things are hard and every day has lots of little battles in it. If I’m tired or don’t make a lot of sense or don’t seem like my normal upbeat self there is a very good reason for it. Just give me a hug or send me a smile across the room. I also might not feel like talking about things. Please know it’s not because I don’t want to include you in my life but maybe that day has been really hard and I just don’t want to cry again. Then again, I may be in the mood to talk and with that often comes tears. Just hand me a tissue. ; )
- Love on Mareto – he’s a good boy and full of love! This diagnosis doesn’t mean you can’t still talk to him or play with him. Just be a little thoughtful. Don’t play aggressively and try to be calmer than you might be with most children. Don’t get in his face – it overwhelms him and he doesn’t know what to do. Talk to him, dance with him, give him high fives, and hug him. He’s a sweetie. Don’t be hurt if he ignores you – he’s probably just trying to work something out in his brain and is having a little trouble.
- Send us encouragement – a little text or email or fb message goes a LONG way. Short and sweet is fine. Just knowing someone out there is thinking about us and cares means the world. But understand if I can’t always respond.
- Please don’t tell us everything is okay. Please don’t tell us Mareto is just fine and perfectly normal. We know that’s not true and it’s not helpful to hear. I know that this is tempting to say to make us feel better but it actually has the opposite effect. It’s also okay if Mareto seems pretty normal to you, but please trust that we as his parents and the ones who spend 24/7 with him know better. [If you've done this please know that I'm not angry and I know it comes from a place of love and caring]
- Keep checking in on us! This isn’t going away – this is our new life. Yes, things will eventually get better, but they’re going to get a lot harder before they get better and it might be a loooong time before they get better.
And my very last bullet point list for this post (I promise!)… here are some specific things you can pray for:
- Communication. Right now it is very difficult for us to communicate with Mareto and him with us. He doesn’t understand us and he is unable to verbally communicate with us. He is sometimes able to show us by taking our hands and guiding us, but not always. As you can imagine, this causes a lot of confusion and frustration at times.
- Feeding/digestion. It is a struggle to get Mareto to eat and when he does he can only eat one food item (usually oatmeal or yogurt). His little digestive system isn’t working quite right so the food isn’t going through him at the rate it needs to.
- Energy for this mama. I am tired 100% of the time. Like an hour after I wake up and already have a cup of coffee in me… I’m ready for a nap. I sure could use a supernatural boost of energy!
There’s plenty more to pray for but I think those are the most urgent requests. Thank you for all the kind and encouraging emails, comments, and messages. I am trying to respond to all of you but it’s taking me awhile. I so appreciate your support though! I hope that answers the questions many of you have had. : )