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Carrying Ammon out of pre-school is probably one of  the happiest times of my day. As soon as he spots me he runs into my arms and YELLS as loud as he can. The other kids are used to it by now. While I am gathering his backpack and coat (with Ammon glued to my person) Loretta will come and tell me something Ammon did new that day. I love that about her. Last Thursday, I was buckling Ammon in his car seat and turned around and Linda was standing there. She smiled and said "I just had to come out and tell you that Ammon noticed my bangs today... he kept reaching out and touching my hair and even tried to say hair."She also told me that she has had two different dreams about Ammon. Both of which he was talking in. I told her I have dreams like that all the time.


Sam wants Ammon to talk to him SO BAD. Tonight while Ammon was in the tub, Sam came up to him and knelt by the him and said "Hi Ammon! Tomorrow is Thanksgiving!! Are you so excited?"
Ammon just kind of looked up at him and carried on with playing letters. I was grateful to Sam for trying to engage him  and then not getting discouraged when he didnt get a response. He prays for him every night that he will learn to talk. He will someday.

Could it be?

I have more inspiration come to me while washing dishes and running than almost anywhere else. Why is that? One night in particular, a few weeks ago, I had just finished washing dishes and sat down. The thought came to me to google FG syndrome. It happened to be on the list of possible syndromes the geneticist had in mind as he evaluated Ammon last September. (We haven't thought about syndromes for  a long while. Our insurance has been back and forth over the last year with Andy's job change and we have been putting off tests. And actually our insurance with Riser wouldnt cover it anyway. ) The number one syndrome he  suggested was Fragile-X. As I read about it, I had the distinct feeling that this was NOT what Ammon has.  I hadn't even read about FG syndrome. This year has been very different. A lot of acceptance, healing, learning and yes...even joy! Not like the past 2 years of exhausting every avenue to 'cure' him  and walking the dead end road of asking 'why? why is this happening?' I used to google all of his symptoms. Most of what would come up was the classic autism tale. As I sat there and read sites pertaining to FG syndrome I couldn't believe what I discovered. Ammon  fits most of the symptoms...Macrocephaly(abnormally large head), small low set ears, wider spread eyes(this all sounds so mean-we love his little self) profound developmental delays, pointed fingers, hypotonia, cronic constipation ( because of malformations in that area).  I was flooded with emotions. A myriad really.  Is it strange that I am hoping that my child has a syndrome?Not just looking back on my pregnancy with him and critiquing every fine detail...always wondering if it was something I could have prevented.


The next day I called Primary Children's Hospital and talked with a lovely person named Tammy. For what ever reason she took it upon herself to take our case and run with it. She even gave me her personal number so I could reach her directly. By the next day she had re-written a request to our new insurance and spoke with our geneticist, Dr. Kerry ( who is about 80 years old and fascinating to talk with). He was confident that our insurance would cover this expensive micro-ray test. She told me to cross our fingers and we would hear back in 2-3weeks. O.K.!! Two days later she called me with excitement in her voice. "Guess what!!? We have heard back and they approved it!!" She said , in all the time she has worked there ( who knows maybe its only been a month) she has never seen an approval that fast. HOT DOG! Last thursday, November 18th, we took him to the lab at Utah Valley and they drew his blood. Now we are waiting. I keep telling myself...either way it will still be our little angel-boy Ammon, but it would be so very nice to know.

While washing dishes I looked up to this sight. So precious. I hurried and grabbed the camera and I'm glad that I did. If only I could put sound to this. You haven't heard anything quite as sweet until you have heard Ammon say "WEEEEEEE!!" I'll try and record it next time with Andy's iphone and share. It's too cute to pass up.

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It's that time again. Summer passed too quickly. Pre-school again. I want him right here. In my arms.
I live for him running up to me with that look. Only I know it. Heck, at BYU they make note of every time he makes eye contact with them. I'm the lucky one. Then I'll squeeze him and say I LOOOOve and hesitate......sometimes I'll score a "You " under his breath. He use to play this endearing game with me every night when I would lay him down for sleep. I would whisper I LOVE....and he would say U back. But it disappeared like so many other things have. So when he remembers I always have to stop myself from crying like a baby.

His pre-school open house is tomorrow morning. They have a new trailer this year and Linda wanted him to come and get a feel for his new environment.(Sounds like a tiger or something.) I'm secretly curious to see if he remembers any of them. On a side note...Linda wrote to me and told me Aersta is doing her school rotation at Northridge.Lucky us! Well, Ammon anyway.

Two Words Together!

Ammon will reach up and grab my cheeks, one in each hand, when he wants me to look at him or look at something . He turns my face in the direction he wants me to see. I was bringing him in from the suburban one night and he pushed my face up and reached his arm high in the sky and said" STAW!"Did I cry? Yes. And I kissed his face mercilessly. I wonder at times how he isn't able to recognize pictures in a book, like a cow, but knows star. Did I even tell him that?


We were singing 5 little monkeys...and he gazed at me with a peculiar look and said "No, no, no (in his HIGH pitched tone of his) and then made the sign "more". WHAT? Are you saying NO MORE? I thought I was dreaming so I repeated back to him what he did and he did it again! He did the same thing to my husband last night when he was singing to him.Break out something to celebrate with! Like that apple cider bubbly stuff.

A running list of his vocabulary:

eggs (my personal fav. He'll say it over and over while he's eating them)
Mo mo mo (always 3 times together)=more
me (mommy)
staw (star)
no (this is new..within the last few weeks)
K (if I say "O.K")
blankee (blanket)
on
off
ock (rock)
stick
A-Z alphabet
ink (drink)

Another Step

Our family hike on Monday helped me to remember how far Ammon has come. I remember thinking ...will he ever walk? We hiked for four hours and Ammon was in and out of the stroller..sometimes running. And there was no complaining coming from him! Just happy to be outside with rocks for the choosing.

Tuesday brought us once again to Shriners. I finally met Dr. Sarah Winters. She was fabulous to talk with. We talked mostly about ABA therapy. She asked me if I felt Ammon would benefit from such an intense therapy. Some families have tried it and had great results others have been disappointed. I know Ammon has a great capacity to learn. He is extremely bright. We just need the right keys to unlock his potential. I felt so good about this therapy. We would have to hire a few people to come to our house to work with him daily. This would be in addition to school and any other speech therapy (like BYU). She mentioned how sad it is to her that families have to pay for this out of pocket. Insurance companies won't help at all. If it were anything else they would...but not for autism.Schools are limited and families are creating their own resources to help their children. There is so much to be done to help families. As I sat there and talked, I felt a fire light within me. I want to be a part of helping other families find help for their children! We've planted our feet on a path...we'll see where it takes us!

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.