As of this month, September, we FINALLY have all our services on track for Felix back here in Iowa. It feels like it took forever, but we’re finally there!
• He has been evaluated and approved for physical therapy and speech therapy. He started PT this week, twice per week. The therapies will be done in “shifts,” such as a couple months of one, then a couple months of another. So he’s not overwhelmed with everything at once.
• He has an occupational therapy evaluation later this month, for which he will also be approved.
• I have the AEA/Early Access (Area Education Agency) involved, also helping with therapies at home, including feeding therapy, and eventually getting him evaluated and set up with an IEP for school.
• He will be eligible for preschool in February when he turns 3, but Jarrod and I are thinking he will start with the next school year in September 2022 instead. We want to give him more of a chance to gain more skills in his therapies first, since there’s been such a disruption due to our move.
He saw his developmental specialist yesterday, and he got a bunch of referrals for more testing:
• He has a sacral dimple that will be imaged to make sure it’s not affecting the function of his spinal cord.
• He will be getting another eye exam because I’m truly convinced he has issues with distance, still.
• He is going to get a swallow study done because his inability to chew and swallow properly is getting in the way of his ability to properly learn to feed himself.
• And finally, he has an appointment for genetic testing and counseling early next year (long wait on that one, it was scheduled in April).
Also with the appointment yesterday came a new diagnosis: Autism Spectrum Disorder. It was bittersweet for me, because I have suspected this from the moment Felix came home from the hospital at birth. With the diagnosis I felt heard and confirmed. But the flip side of that… all the hope I had that he could grow and develop and come out of his delays has now been crushed. This is a permanent state for Felix. I’m not scared or intimidated by this diagnosis. I just know it’s going to be a lot of work. Then again it already has been. We’ve all adjusted to the therapy and appointment schedule. We already know tests will keep coming until we find answers.
The specialist said ASD is secondary to the real issue, and he believes the genetic testing will hold the real answer. Personally, my only concern in the genetic realm is finding something degenerative. That’s my fear. But I’m hoping for the best, and we will cross whatever bridge is laid in front of us when we get to it.
No matter what, this little boy is a blessing. I couldn’t ask for a better toddler. He’s sweet and cuddly, curious and strong, determined and stubborn. He’s growing and learning on his own time, and that’s perfectly okay. I love him unconditionally.