So after a long, restless nights sleep (especially for Lizze) I have begun to process everything. The first things that pop into my mind is how are we going to survive this physically, emotionally and financially. We’re barely surviving as it is. I know nothing fundamentally has changed but the dynamic has. Before today we had hope (admittedly little, but hope none-the-less) that Emmett would pull out of this or just start talking. I was hoping, praying that he was just going to start talking late little happens sometimes. I was hoping that if we planned for the worst and hoped for the best it we would come out on top. Part of me knew we wouldn’t but that didn’t matter.
Now everything has changed. Where as before we were in “Let’s figure out what’s wrong with Emmett” mode now we are in “we need to get Emmett into as many early intervention [Things] as possible” mode. The doctor told us to get Emmett into a study at Case Western dealing with “early Intervention”. It’s free and she said he needs as much intervention as possible. That call will go out this afternoon.
She is also referring us to a metabolic specialist for evaluation as well. The specialist is new to Akron Children’s but is internationally known for specializing in cases like this she said. So that will be coming down the shoot. We also have to have him tested for seizure activity.
All of this is VERY overwhelming. I don’t know how we can handle all of these things. The logistics and financial woes associated with all of this will be difficult to manage. I guess the next step (aside for all the interventions) is to get him on disability. I hate the idea of it but we had to do that with Gavin as well. It opens MANY doors that would otherwise be closed. So we will start that process soon….. This is all just a lot to take in… We cannot even have time to just “be” right now cause everything going on around us won’t stop long enough to allow for that. We have a very long, tough road ahead but what choice do we have? Emmett deserves a fair shake at life and I’ll be damned if we don’t give that to him….whatever the cost…….
I thought of you today…heard a few commercials on the radio that this is Autism awareness month and they did a little explanation!
Ah. Ok. I wasn't sure if you had mentioned something that I missed re seziures.
I'm sorry both you (rob & lizze AND deb & Marc) all have to deal with the uncertainties, not knowing what comes next or who will there or willing to help. It truly breaks my heart 🙁
Thanks Deb and Nikki.
They did the same thing with Gavin. Emmett wakes up at about the same times every night. Almost like a routine. We need to break that cycle some how and reset his sleep cycle.
My son has been tested for seizures a couple of times. This happens with Autistic children. It may explain him waking up in the middle of the night. Unfortunitly when they become teenagers and puberty there is even more of a chance for seizures. Rob and Liz I'm so sorry to hear this about Emmet. We are sending all our prayers and know we are here if you need us even if it is just to talk and vent!
Why does he need to be tested for seizure activity?
<3 you guys. That dynamic has NOT changed! 😀