Wednesday, January 11, 2017

Nolan and ASD

Back on December 20 we had Nolan's observation/assessment.  This was to test Nolan for autism and just look at some of his development.  The testing took place at Catalpa and it was about an hour and a half. They did allow Alex and I to stay so we could give her perspective if it was "normal" for him to do something or not so she could kind of know if this was a good basis for the observation.  It was.  It was very close to a typical day for him.

I kept second guessing myself and wondering if Nolan really is in need of an observation, was I being to hard on him, etc.  I mentioned this to his doctor and she did say that she was glad we brought him in because there are some definite red flags.  The doctor also said we are doing a great job parenting him and I have "early childhood teacher written all over my parenting."  Hope that is a good thing ;)

While waiting for results your brain goes a lot of places.  You want a diagnosis because then you can get supports, but you were also hoping they say it is just a phase he will out grow.  It is hard.  Logical brain knows supports will help, it will be fine, there are many ways of growth, it is ok he is now with peers, he will get there in his own time in his own way, but emotional brain has a hard time with that. All the school and training I have had does not prepare you to be a mom in this situation.  I have talked to moms in this situation as their teacher, but it still does not prepare you to be here.  I am not sure anything can.

I am not going to lie, Alex and I have taken on the assumption that Nolan is autistic.  So, that being said, we have begun reading and researching.   We have begun doing therapy in the best/only ways we know how, accepting, and changing our perspective.  It has helped us AND it has been helping Nolan.

Well the test results are in.  Nolan is autistic, ASD.  ASD stands for autism spectrum disorder. It is that, a spectrum.  The current way (in the ever changing way) that levels/the spectrum work is level 1 (very little supports needed), level 2 (moderate level of supports needed), level 3 (high level of supports needed).  Nolan scored between level 2 & 3, but with his other levels of development, the psychologist said she felt comfortable putting him at a level 2.  Based on the assessment she did in her office, he language was that of an 18 month old.

I am not going to lie, that was higher level ASD than I anticipated and lower vocabulary than I anticipated, a rock hit my stomach.  Tears hit my eyes.  My love for this kid is so incredibly strong that this diagnosis does not change this, but it scares me what it means for a prognosis.  I am currently torn between sobbing my eyes out in fear, and getting to work picking therapists, planning, setting up therapy schedules and lets get sh** done. Sooo....naturally when you are stuck with those 2 feelings simultaneously, I freeze.  I put on my pjs, sit on the couch and just watch my family.  I watch Nolan playing and happy.  I watch Stella on the cusp of crawling.  I sit next to Alex appreciative he is off of work today and can be here.  One day.  I am going to watch and be passive one day.  I get one day.

Day 2.  OT day.  Explain yesterday.  Make a plan. Ask for Speech & Language referral.  Contact every person I know who works with children who have autism.  Lists, lists, books, references lists.
Ok, what this means/next steps:
Our psychologist has recommended ABA therapy--starting pretty vigorous 30-40 hours a week.  Continue OT and start S/L services.  He is young, he is placid and we can make a big difference in Nolan's life with this early intervention.

So my feelings on this are mixed.  I want to do everything I can for Nolan.  I really want to help him and I want to learn.  I want to watch his therapists so I can do continued language and consistency in programs they implement.  I want him to grow as much as his little mind is ready to, but I also don't want to overwhelm him.  I know it is a recommended amount of time and they wouldn't recommend if they didn't think it was good for him, but I still have some apprehension.  Alex and I have worked hard to not allow things to be too hard to be worth doing.  We like giving them memories (or at least pictures of mom and dad's memories) to look back on.  We don't want Nolan to be in therapy all day and not a part of our family of 4 unit.  I don't want him gone all day when I am here all day to spend time with him (he is only 2!).  I don't want to be in all this therapy and working to make him be a successful adult that he misses his childhood.  Yes, teaching him all the skills he need to be a successful, independent adult is important BUT so is his childhood--the here and now.  I want to enjoy him now.  I want him to enjoy now.  I want him to be a kid.  We still want our Tuesdays at the children's museum or splash pad or whatever we see fun in our middle of the week fun.  Alex and I have talked and we are on the same page.  We will discuss this with a therapist team (when we finally pick a therapist team) and find a fit that helps us feel comfortable.

There are many discussions to have with a lot of people but one this is for sure.  Nolan is going to be ok.  He has a million people who love him and there is a plethora of information and studies out there to help him be successful and professionals that can help us implement them.  I have the UTMOST faith it will all be ok, we just have a very windy, bumpy, dark, bright, colorful, exciting journey ahead of us.

As someone extremely important to me has reminded me: Let go and Let God.  💜
Now, I want you all to know this post above is A LOT about me-my feelings, my plans.  Nolan is an amazing little boy.  He is smart, he is cute, he is learning more every day.  I want to highlight more of the stuff he's done!  Yay! for Nolan highlights!

follow along for our day to day happenings on Instagram @behindthescenes_mrsg