Interview

At 7am this morning I met with Maggie at the BYU Speech Clinic. She asked me if I would come and answer a few questions on film about Troy,our friend the robot. She asked how I felt Troy had helped Ammon. Well, Ammon loves this little robot.He gets an inch from Troy's face and then sits right in front of him to hear him sing. Troy does all the actions to 5 little monkeys, one of Ammon's favorite songs. I feel as though Troy had helped Ammon learn and retain the actions to this cute little tune. He was also a means to Ammon showing me something with his eyes. He would look at Troy and then look at me as if he were saying..LOOK MOM!! I loved it. That doesn't happen to often so for me it was a joyous moment.

Shriners Visit

Looking out the window at the falling snow made me want to retreat back to bed and stay in pajamas until 11am. I picked up the phone to reschedule Ammon's Shriners appointment but changed my mind when I remembered how long it took to GET the appointment in the first place.
We were 1/2 hour late...because our windshield wipers decided to tango and break...but now we have fancy new ones. Hooray for us.
Ammon had a hip x-ray when we first arrived. I was glad it took less than 5 minutes to get him in and out of there and didnt require any undressing or restraining. Just a really sad face.
Ammon really noticed the fish this time. (I had a secret stash of CHeetos and thanks to the fish I didnt have to break them out so early in our visit) I loved watching him look closely at each one.
Dr. Hennesey came and looked at his feet and legs. We talked about the lack of feeling in his thighs. If I tickle him he really doesnt squirm too much or the other day I noticed the bath water was too hot and he just sat under it without any protest.(It didnt burn him) She concluded along with Dr.Kerr(neurologist) it was a sensory disfunction from the brain...which would entail hypotonia etc. I love Dr. Ker. She honestly wants to help. After looking at the x-ray (his hips looked awesome) she noticed how backed up his plumming was. We talked about how difficult it is for him to have a bowel movement. She insisted we get in with their Developmental Pediatrician about the situation. (She was also strongly suggesting we get Ammon into a school for children with autism)This particular Doctor has helped many families help their children with special needs learn toilet training. SWEET. Let me at her. I can't wait to talk to her on Tues. We will try and get Ammon casted that day for his new braces. Hopefully it will go better than last time...maybe Costco carries an industrial size bag of Cheetos.

Music

Mighty A has a great need to HUM. Not the cute..hmm hmmm, but what is called a 'self stim' in the autistic world. It gets pretty loud and unrelenting at times. To me it's a call to get in his world and try and play with him, or try and get him out of it. Music has been an answer. I Am A Child of God is one of his favorite songs to listen to. I put it on and he will stand there and listen. I"ll even catch him saying "me" at the right time in the song. Gives my heart JOY. True Joy.



Lately the thought that has come to me over and over are...Why are you trying to fix Ammon?
Therapy...special diets...vitamins. Maybe Ammon is experiencing his mission here just in the way he was intended to. Wouldn't we all like to just know we are loved and safe and well fed(very well fed I might add) warm, comfortable and have people play with us and hug us all day?Wouldn't we all like to blur out the world and just be with the ones we love and who love us?


John9:1-3 And as Jesus passed by, he saw a man which was blind from his birth.And his disciples asked him,saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents; but that the works of God should be made manifest in him.

Heavenly Father's 'works' are being manifested to me and our family through this sweet little boy. Yes, I want him to talk and understand what I'm saying to him... but he communicates to me through his spirit, his hugs and smiles and gestures and his eyes. Thank heaven for those gifts.

I love this picture. I loved this day. We went on a family hike. . He started off walking with all of us and made it quite a ways. It was heart warming to see him on the trail. We brought the baby pack for him and he was content the rest of the hike on Andy's back. Afterward we played football in a field and here he is free again on his own two feet. Complete bliss.

His pre-school teachers are angels. He has quite a few angels caring for him. Mrs. Loretta, Linda, Ashley and Suzie are some of them. They are so loving. He is so well cared for. When I drop him off he runs right into the arms of Mrs. Loretta. Oh how I love her. She prays for guidance every morning to know how to help him. He smells like her when I pick him up...so I know she has been holding him and helping him.His art work is with help from her hand on his hand. Brings me peace. She is quick to tell me what she has noticed about him during his time there...something new he has done. Today, she told me he was sitting at the table with some of the other children and they were kicking their feet and laughing, then he startedkicking his feet and laughing with them. Happy day.

Thoughts from Therapy

Just wanted to jot down the notes I wrote during therapy. Ersta asked me to bring in a picture of each child in our family so she could make a game for him to point out family members. My thoughts today: The goal:Getting Ammon to look at books one page at a time, even better, have him point to familiar objects and recognize the objects. The idea: home made books with actual photographs of familiar objects and people. Another thought: Use the PERC for music/finger play ideas.

Ammon and a Robot

Lacey--We love you!! Ammon would run into the building looking for Lacey. As soon as he would see her he would run into her arms and she would scoop him up. She worked so hard to help Ammon. She went to GREAT lengths to make therapy a special learning time for Ammon. She was very aware of Ammon's sensitivities to smells and textures, but she wanted to use play dough to strengthen hand muscles and for a table activity. Ammon gags SO BAD when he gets within a mile of it. So, she made some home made dough and added a jello packet to try to make it smell good. OH MY> he gagged like you would not believe. It sounds really mean but...Lacey and I were trying to not bust a gut(after he stopped of course). Go here to read Lacey's presentation about Ammon. She made sugar cookies for him to frost, covered a table with paper with all his favorite letters written on it, made chocolate pudding to help him feed a baby doll, created a wall schedule, brought in a tote of rice and water and was always such a good sport. I loved how excited she would get when Ammon would finally get something we would be working on. Good times were had at the BYU Speech Clinic with her. Ammon and I will both miss her.



Lee Robinson called me today from BYU. She is a one of the directors at the Speech Clinic. She called to ask me if I would be ok with having Ammon be a part of an experiment...an experiment to see how autistic children interact with Robots...in hopes that in the future they might use robots (a little 3 foot robot that is immobile but has facial expressions and talks) to help them communicate. Very interesting. I'm excited to see what Ammon's reaction is...hopefully positive. Since it is a new semester, Ammon has a new graduate student. Her name is Ersta. We met her for the first time last week. A had to endure yet another hearing torture, I MEAN , test. Ersta was extremely compassionate and is very good with Ammon. Hopefully they will have a connection.

January 4, 2010
Up bright and early to make it into Salt Lake by 8:30. Sam is such a good sport. I woke him up a little before 7 and was whispering CHEERIOS in his ear to get him out of bed. We haven't had cold cereal for a few weeks so it worked. I didn't get on 1-15 until 8 so needless to say I was late. CSHCN-Children with special heath care needs-was our destination. We hadn't been there for almost a year. Dr. Brad Peck (psychologist) was the Doctor of the day. I always kick myself for not writing down my questions so I will remember everything. Oh well. Dr. immediately sat down and began looking over his notes from last year and then observing Ammon. Asked me questions about any progress he had made over the year. To me it was HUGE that he is saying a few words again.

Dr:" I sense in your voice you are worried whether he will talk"
All of a sudden I became EXTREMELY SELF AWARE...if you know what I mean...after all I was sitting there talking to a psychologist.

Then I reminded myself for the millionth time that this was about Ammon not me.

He went on to give me some helpful insights."Kids with PDD (pervasive developmental disorder) like Ammon who lose language will generally begin to regain some language at 3 years and 3 months which will build over the next few years. Their receptive language however does not come until around 7 years old." (Which was really a shock to me.) Dr. Kerr had told me that sometimes when children lose language they never speak again...so I became really hopeful for A. I would give anything to sit and ask him something and have him answer me back.I have pretend conversations with him all the time in my head. Usually about him telling me something about a truck or what he wants to eat. I'm living for that. I've pictured it a million times.

Dr. then tried to test his I.Q. Sounds funny. Ammon just wanted to re-arrange the furniture. So we'll wait on that. Next year.