Nicholas is a sweet, caring, gentle creature that has a smile on his face no matter what happened 5 minutes ago. He will always welcome others with a hug of which I encourage because we aren't sure how much longer he will be able to "hug", special thanks to our friend "Duchenne". Nicholas recently has been getting therapy from Lucille Packards children's Hospital at Stanford. We chose Pivotal Response Therapy with the help of his lead Psychologist. His PRT is working out GREAT. He is being very flexible, finding his own solutions and completing tasks on request. The school on the other hand initially deemed his recently new verbal requests and demands as another defiant behavior, we deemed that as a step forward, he wasn't screaming anymore! Im assuming this is because they are so use to flashing a picture of a stick man in front of a child then giving them a lollipop when they complete the deemed task. Needless to say he is moving mountains and I am proud regardless what the districts behavior specialist feels. His psychology team feels he is doing excellent and is very proud of his flexibility.
In the midst of his behavior at school, they had neglected his physical needs. He has been doing P.E. which includes a stretching band (a big no no for Duchenne) and he was jumping on the trampoline another No No. My husband and I had no idea he was doing these activities at school, assuming the adaptive PE was being followed through. Nicholas had been crying of leg pains at school and at home, we now know why. The OI re-addressed his do's and don'ts with the school so I didn't have to go through all the crying, frustration all over again. This is the exact reason WHY I am always so worried and at the school for hours.
School has been such an important part of Nicholas' day, he enjoys learning (in his own way), and he loves reading of which he has recieved 3 reading awards this year. Recently he recieved an award for math. We currently are searching new options for 1st grade and in discussions with his Psycology team to finalize our decision.
Duchenne OH Duchenne! the past few months Nicholas has requested to utilize his adaptive stroller daily and well, it is just too small. CCS has ordered him a new convaid and he was so excited to pick out the push chair, colors and accessories with his Physical Therapist. We also let him pick out his AFO's. I believe its important to allow them to be "THE" decision maker when it comes to choices. They dont get to choose this life, but allowing them to choose what it looks like.
This morning I had a mixed blessing thanks to PRT and Duchenne. He got dressed and was ready to go, I saw he had a really difficult time getting up from the floor. As he was getting up he said "A little help please!" I ran to assist him before he fell. We then decided to do a little stretching to get us moving, he felt really tight and was uncomfortable. He then told me it was time to go, so we were out the door. I opened the doors to the van and Bella hopped right in, buckled up and as I walked to Nicholas's side I herd him ask for help again. This time he was waiting patiently (thank you PRT), but needed help just to crawl into the van (F&*^ you Duchenne). This time he didnt want a little push with assistance, he wanted to be picked up and placed into his seat (again F%^& you Duchenne). He looked at me with his big beautiful smile, big bright brown eyes and said "Mommy, Thank you so much! I love you to the moon"! I kissed him on his head and then bucked him in. We were late for school and I didnt have time to think about what had just happened, afterall its just our life. I then started recalling the day before at his school. 2 women standing in the same place everyday at his school waiting for their children to get out were staring at us through the fence as I was pushing him in his chair. I had that feeling when someone is watching you and it feels like they are shooting you with Superman rays. I kept walking and unfortunately we had to walk right past them to get into our car. The younger woman(maybe in her 20's) says to the older woman " Look, he isnt a baby! I told you!" Those words ran through my brain over and over again until we got to the school this morning. When we got to the school, I got Bella out and Nicholas said "Mommy Im going to make good choices and wait until you get sister and my stroller out because I need help. My legs hurt very bad today". I was so happy he used his words and waited like a champ! BUT on the inside I was fighting back the Niagra Falls of tears.
I know I am rambling so I will rap it up. I am very proud of the mountains Nicholas is moving with his behavior. I have such mixed feelings that now my beautiful 6 year old boy can tell me his pain, his feelings and yet he still has a smile. One step forward in behavior, 2 steps back Duchenne.
And last, Nicholas and I have completed another race together. The race picture below is from LPCH summer scamper. I had the pleasure of having a special friend run with Nicholas and I at She.is.Beautiful in Santa Cruz this last weekend. The view of the Monterey Bay was crystal clear and our path was healing. He told me that he loves racing and this race was the best DAY EVER!
