Saturday, November 24, 2012

Second Opinions

This week was an incredibly overwhelming week for us. We started it off with 2 HUGE appointments for Carter. First Carter had his Preschool Evaluation for the Early Intervention Program in Jordan School District. Good news: He qualifies. Great news: The teachers who evaluated him loved him so much they both wanted him in their classes so he gets to split his time between the two. He will be attending 4 days a week from 11:30 am - 1:30 pm. He even takes a BUS to school. I don't know if I am ready for that. Nor do I feel Carter is ready for it. We will have to see how that goes. 
The two classes he will be going to is half the week will be the Autistic class. Half of his class is non verbal and Carter's intellectual capacity supersedes the class but what he lacks that the class will help him is attention and focus as well as speech. The other half of the time will be a typical special ed class that will help him develop his social skills. 
I know this is what Carter needs right now. How long this arrangement lasts, we will see. But for right now. I am content with the outcome of this meeting. 

On Wednesday we met with a Doctor at the Children of Special Health Care Needs clinic. This is the doctors appointment I have been biting my teeth over for WEEKS. I needed this appointment for me to find the boundaries for Carter's learning ability. I have not been satisfied with the expectations the pediatricians office has given us regarding Carter. There is so much that is unsaid, undiscovered and unknown about Carter. After the doctor asked us 50 questions and observed Carter at play and discovering his tendencies, he feels he is 99% sure that Carter has Aspergers. If you have ever seen the show Parenthood, Kristina and Adam have a son named Max in the show whom also has Aspergers. For anyone who has seen this show knows this family has seen challenges in raising this sweet boy. Keep in mind, every child on the Autism Spectrum Disorder scale is different with their symptoms. So comparing Carter and Max would be impossible. But there are similarities and every day we are seeing more of these similarities. 
The 1% that is holding the doctor back from diagnosing Carter with Aspergers is his speech. One common absolutely necessary symptom of Aspergers is their progressive advanced speech. Knowing this, he explained that half of the children with Aspergers have advanced speech skills beginning at 10 or 11 months of age and the other half are practically non verbal until the age of approx. 3 years 3 months. Why the specific time frame? I don't know but he says its pretty consistent. Carter is 3 years and 1 1/2 months. Since turning 3, Carters's speech has grown leaps and bounds. So many words and so many clearly pronounced words have entered into his every day speech. Do I think he could be speaking like an adult in a month and a half? I don't know. I think I could never predict my little boy and his abilities. So we shall see how this transpires. As it stands Carter's technical diagnosis is PDD-NOS which is Pervasive Development Disorder- Not Otherwise Specified. Not to go into too many specifics, but Carter doesn't fit most of the symptoms of this diagnosis. His symptoms fit Aspergers, except for speech. As he listed off all of the symptoms, it blew my mind how accurate it is into Carter's little world. I can't even describe how exciting it was to hear my son fit so perfectly into a category and even more so that there are definite options for him that will help shape and mold him for the future. We have a follow up appointment for next July to confirm if his speech is in alignment with the Aspergers diagnosis. I have gone through a whirl wind of emotions since this doctors appointment. Feeling like he still doesn't fit anywhere and what if he doesn't fit into the Aspergers diagnosis by next summer where will he belong and with knowing what the doctor thinks right now is enough to plan out our decisions for Carter for the next year.... and around and around I go. I've done my crying. I've felt overwhelmed. I've felt unsure. We've prayed. We've discussed, and discussed again. We know we are making the right move....for right now. 
Talking with the doctor, and looking at what type of boy Carter is. We are going to plan the next year as if he does has Aspergers. We are going to bypass any therapy. We are going to turn down private school options. We will work aggressively at mainstreaming Carter. Aspies (as the community calls themselves), are known for their anxiety, and for the social delays. The difficult task at hand? Most of the "therapy" for Carter lies on Mom and Dad. I can't tell you the number of times I feel like I am going to buckle under the incredible amount of pressure I feel right now. With so much responsibility landing on Ed's and my shoulders...how could we not? Despite what I may show the world at large, most days I am fine and I am pushing forward for Carter, for his progress, for his future. The other days, I'm sad. I cry. I curl up into a little ball against the wall and wait. Some days I wish I was stronger, a better mom, a trained therapist, anything to help Carter's situation.  But I'm not. I have only the skills I've brought to the table. So we will begin teaching Carter how to make eye contact with people. We begin teaching Carter scripts for every day life. We begin to teach Carter how to talk with other kids. We begin a whole new chapter of our lives. 
And we are jumping in head first. 

1 comment:

Bridgett said...

Sedra and Ed,
My oldest son was recently diagnosed with mild spectrum autism, specifically in his social interactions. Many of the things you have said that you are working on with Carter we've also been working on the past year. My Darwin is four years old and we are just about to start a special preschool similar to the one you have described. I'm so glad that you are getting second opinions and are finding out what might be the best solutions for your son. Early intervention will make such a huge difference for Carter. I've felt so much better since the diagnosis in just being validated that he has special needs that I can't fulfill and that there is somewhere where people can help.
Good luck with everything!