It seems that each time we think that we are getting closer to getting all the evaluations scheduled and therapies set up, we then find out there is so much work ahead of us.
Speech therapy should be getting scheduled soon, hopefully we'll soon have an OT do an evaluation to find out Mr N's sensory needs.
Yesterday we had therapy from 9:30-12:30 with the coordinator, as Mr N's current therapist is having some health issues and they are in the process of replacing her with someone new.
The coordinator asked if we'd scheduled a brain scan, EEG, blood work and metabolic evaluation yet. Huh? I had no idea we needed to do these things. She said they are typically done around three years old to rule out any other issues. These tests will rule out (or in) Fragile X along with other disorders that are common in children with Autism.
This probably sounds like just routine doctor appointments, testing, evaluations, but to me it's heart wrenching to think that there might be something wrong with my baby that I had never considered. Will it ever end? How much more is there to come? How much more fear, stress, anxiety and worries will I be forced to endure? Is denial still an option? Can I just find some sand and bury my head? I know we need to see if there is anything else that needs to be addressed and treated but sometimes I wonder just how much we can really handle.
Once again, I wish that hugs could cure and love was the best medicine. I can't help but look at my little man and see this beautiful, happy, intelligent little boy whose struggles within cause him so much pain, frustration and confusion. How can such a sweet, caring, loving boy be looking at a lifetime of struggles?
As I sit here typing with tears falling, Mr N comes over and tries to pick the tears out of my eyes. He sees my hurt, he feels my pain, but certainly doesn't know that I cry these tears for him. Minutes later he's asking for milk, I tell him where it is, he laughs and says "what?" and so begins his little game, I repeat myself, he asks "what?" again with a big grin. My darling little boy has a sense of humor, he knows how to make mommy laugh.
Again, I apologize for this contorted rambling of things on my mind. So many random and conflicting emotions constantly bombard me with this journey. I'm super in love with E's newly painted room, it's looking magnificent, I'm extremely ecstatic about my family arriving tomorrow, I'm scared about more testing for Mr N, I'm nervous about how Mr N will deal with relatives for the next week and our planned travels with them. I need to be working on cleaning and getting things organized and ready to go, but I would rather be outside digging holes and filling them in again.
It will probably be a week or more before I'm able to update here, as we will be super busy. I will try to update when we find out when therapy will resume with a new therapist.
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