More Amaya Updates

Greetings!

I hope you all are doing well.  We are doing great.  Amaya continues to enjoy school and we are bonding with families and children from all over Southern California and even some families from distant parts of the world.  The entire experience at UCLA ECPHP is one we will never forget.  The faculty and staff are so warm and caring, the families are extremely supportive of each other and our daughter is making progress.  There is no other place like this and we don’t want to leave.  I don’t want to leave my new friends.  I don’t want Amaya to leave her new friends and we don’t want to leave the staff.  We miss our old team too…can’t they all just move in with us?!?

This week we had Amaya’s case conference with the therapists, teachers, case worker, doctor, social worker and Justin and myself to discuss what Amaya is working on, what she has mastered and future goals to prepare her for discharge.  After listening to everyone, I realized our little Amaya has made quite a bit of progress.  Much of her progress are small steps, but they all add up and are necessary to her overall development.  I think on paper, her progress looks average at best, but when you see her, you can see the change.  She holds herself differently.  She is so much more confident, she is calm and more importantly, she is interested in playing with toys…appropriately!!!  We agreed that Amaya is just starting to hit her stride and we all agreed she needs all the time she can get to obtain optimal results.

When Amaya came to UCLA, she had almost zero play skills.  EVERYTHING went into her mouth.  That’s all she knew how to do.  Physically she was a 2 year old, but developmentally, she was still a baby.  (Her ABA team was just getting started when we were accepted to UCLA so they didn’t have a fair shot, but they did help her prepare for UCLA by teaching her to sit at a table and work.)  Amaya now does not constantly put every thing into her mouth (can you say “Praise tha Lord!!!”).  She can now put toys in buckets, can take them out and has seemed to generalize those skills.  She can take apart and put together a ring stacker, (something I thought would never happen).  She can tap a drum, can shake an egg shaker, is starting to want to draw with chalk, is starting to stack blocks and is starting to push and roll balls.  She is starting to try to put puzzles together and can match the right puzzle piece to the appropriate slot, but she is having a hard time manipulating the pieces.  She can put coins into a slot.  Her fine motor strength has increased tremendously!  She has also started to walk up and down stairs while holding onto the rails and is experimenting walking up and down without holding on.  She is pointing both when prompted (told to) and spontaneously - again another skill I thought would never happen.  Today she waved “bye-bye” without a physical prompt.  She can drink out of a cup, although she is having a problem putting the cup down on the table without spilling.  On the playground she can independently climb up the stairs and will go down the little slide and the big slide by herself.  Prior to coming to UCLA she was too scared to go down the slides without holding onto our hands.  She is also learning to walk on a balance beam to work on her motor planning and can do that while holding onto her occupational therapists finger.  All these things are little things many parents take for granted, but we have learned to appreciate all these little molehills she has climbed.

I think the most amazing progress to me has been her understanding and her increase in receptive language.  She understands so much more!  When she is testing me and is throwing her cup on the floor and I tell her to pick it up and give it to Mommy, she does it.  When I asked her where her friend Aliya was, she looked at her and then pointed to her.  When I asked her where Melanie was, she looked at her and pointed at her.  I asked her where the duck was…she pointed to the duck.  The frog.  She pointed to the frog.  She never was able to show me what she knew until she learned to point.  I had no idea how much she understood.  She continues to amaze me and I love it!  Today I realized if I can get her to point and actually look at pictures of the items I want her learn, she will hopefully pick them up quicker.  Since she has a love for books, I am starting to use those in hopes of helping her learn to label and to learn the actual names for many objects.  I am hopeful that will help her to start talking.  She is not yet speaking, but she is making tons of new sounds.  I think the PROMPT therapy is really going to help her with her apraxia.

Considering Amaya still has a decent amount of time left at UCLA ECPHP, I can only imagine her gains will continue to be significant.  Because of her apraxia, I think the task of teaching her is a much longer and more difficult because she does not seem to retain the skills like she should.  She will often times learn a new skill only to lose one I thought she had mastered.  It is this aspect that makes this entire challenge so frustrating.  However, we are with the best of the best.  I have no complaints.  We just have to continue to carry through what the therapists, teachers and faculty are doing in the classroom at home in order for Amaya to reach her full potential.  I truly believe that if we can get her developmental foundation established and really make those neural pathways solidified for her, we will have a great start.  I also feel that her motor planning difficulties need to be tackled head on because if we can make more headway there, she can really focus on learning.  So in hopes of addressing that, we will continue to work with the O.T. but are considering toddler activity groups in hopes of making the work more like play for Amaya.