Thursday, October 18, 2007
Having a good couple of days so far. We switched from his soy milk to almond milk after the O'soy yogurt scare and coincidence or not, he has been very focused and peaceful! It's been a week now. It's one of those..was it the extra probiotic? the new yogurt? or the almond milk? coincidence? hmmm like everything in autism. Who knows!
He has continued to work on tracing his name and matching very well. His teacher wrote a note that he had matched cards with the months on them to a board with the same names. I did not believe it but. she was right! when I tried it at home, not only did he do it but he did it quickly and accurately.
We have also noticed he is holding his containers during lunch the right way! Isn't it sad the stuff that we come to admire? I wanted him to finish his banana which was cut up , inside a plastic container. He held it with his left hand, angled it towards him to reach better and pinched it with the fork on his right hand! Just last month we had to show him hand over hand (like we have been doing forever) that he has to support it with his left hand or it will slide off the table. Here he was doing it all like second nature.
Woohoo! Baby steps but still getting to that final goal!
Lastly, he has been getting even better with his dancing. My son loves to dance and usually does so with tremendous rhythm. Always on beat. It's gotten only better. He craves choreography from me which I gladly do of course. Loves to follow along as he looks in the mirror and flashes that amazing smile. He is so happy and it's one of those things that helps us get through all the negative stuff. That beautiful giggle and smile....Sigh.
Wednesday, October 10, 2007
Beep beep beep....the alarm goes off.
It is 6am and time to leave for my son's brain MRI.
Exciting stuff, only, not so much. Sigh
I get everything ready and at about 6:40am change my son while he is still sleeping and carry him to the car. In his sleep haze he asks for his ABC music cd. Never misses a moment does he? So cute.We arrive to the empty parking lot and go into the waiting room. We sign in and wait for someone to come out with instructions. Once she does, we fill out all the necessary paper work and into another room we go.This one with all sorts of electronics and buttons my son wanted to touch. He did not know what to do so he just paced back and forth and all around checking out all of the equipment.
I hand the nurse the list of the 15 supplements and vitamins my son takes to make sure there is no adverse reaction to anything they will administer when combined with these.I get the usual questions as to why we use spironolactone and why do we give him this and that. I had my binder with me so this time I was able to give perfect answers. The 2 nurses and the technician all look at me like most people look at me when I talk about bio med intervention;wondering if I have lost all my marbles. I assure them my marbles are great, all there and shiny too! But really, I explain that we see one of the top DAN docs and that at some point we have to trust someone to help our child move along. One questions if we vaccinate, I answered him that we used to.
They attempt to take my son's vitals but as usual, other than weighing him in (39lbs!) they can't get anything done without him screaming and fighting them all. To administer the versed to calm him down it took 3 people to pin him down to the bed and a bed strap to get it done. The nurse slowly administered it with a syringe in his mouth. Not so fun what you get used to doing these days. The second time to pin him down was to apply the i.v. That was another session of adults pinning down my little boy. He kept screaming using all of the words he knows to make us stop: "all done, bye bye, stop, stop it". Completely heartbreaking. By now, the versed was taking over and he started to get groggy though not nearly as much as he needed to be. They wrapped a diaper around his hand to prevent him from pulling the iv off and my husband carried him outside. They have this huge trailer with the MRI machine inside. A big, scary, intimidating machine. My husband placed him on the bed and kept a tight hug grip while they administered the next drug:Nembutal. They had 4 individual doses of which he ended up requiring only 2. They give them one at a time and save some in case the kids wake up during the procedure. What a thought.
It was frightening but in a weird way cute to see him fight but then slowly give in to the drug because it was like he was drunk. He kept talking slowly and slurring all speech. My sweet boy. He finally fell asleep and they laid him down and strapped him in. They put a sheet over him to make sure he was not cold and asked us to wait in the front lobby. I thought the time would go by slow but it thankfully did not. Before we knew it, 30 minutes later, we were called in to the recovery room. He laid there out of it completely in sleepy land. The nurse administered 180cc's of i.v. saline fluid to push the drugs out of his system. He slept through all of it. After getting him to drink 3 ounces of water, he was released.
My husband carried to the car and buckled him in. Luckily it was only a 12 minute ride. Because he was so out of it, his head was completely bobbed down most of the ride home. We got there and carried him into bed. I got prepared for a 6 hour period of laying in bed with him as he came out of it. Boy was I wrong! 10 minutes after we arrived he bolted up on the bed and attempted to jump off and run to his room like he usually does except he had no strength in his legs and arms yet and we had to keep holding him off as he fought us off because in his mind, he was strong enough. The nurse told us this would happen but I had no idea it would be so bad. By the end of 20 minutes he was back to his old self! well, his old self..just a little drunk looking. The next 2 hours proved challenging as he did not want to be shadowed and insisted on running all over the house. He fell twice but luckily nothing bad, just slip and slides. I was completely exhausted. Once we knew he was not wobbly anymore, we finally let him be. Completely exhausted I tell ya.
I wanted to note 2 things that happened almost right after we got home. As I carried him to the playroom floor and was lowering him to the floor, he looked at me with his sleepy eyes and said "Hello, hello mommy". Huh? this is huge! he has never greeted me. The extent of him greeting me is usually a big grin and running towards me. This time, he deliberately made eye contact and greeted me. I was in shock. I said "Hi baby, how are you? how do you feel?" but of course, no answer. He was in and out of his world and the drug world that he still had in his body. Minutes later he noticed the bandage on his hand from the i.v. Usually, he calls bandages "stickers" and he is terrified of them. Taking one off means more pinning down or letting them fall off on their own. This time, he noticed, looked at it and slowly draped his arm over my leg followed by grabbing my hand with the bandage free one to signal me to take it off. I did, thinking he would pull his hand back and he did not. In fact, when I finally peeled it off, he felt the area where it was like he was now relieved it was gone. mystery number # 2. Why the sudden lucid moments? was it the i.v. ? did that liquid running through his body help in any way? was it just coincidence? am I over analyzing this? I think there was a 3rd one, but cannot recall right now. Mommy brain.
At around 4pm, the phone rang. They called to say the MRI results were normal. Really? normal? That was it. A 15 second call for results. I wish I could sit there with the neurologist and scan every inch of that MRI. I fear they just see this as routine , scan it briefly and push them aside. Not that I want something to be wrong but it seems so casual that a brief phone call ends the entire MRI issue. I have requested copies on disc to perhaps get a second opinion. I have heard of some of the white matter on the mri's signaling metal toxicity. Will have to look into this. Can't ask the neurologist because he says he does not believe in magic, as in , don't come to me with any other theories that are not ABA, ST and OT intervention related.
So on with our detective work in the search for my baby's recovery.
Just this afternoon while in the car, he pointed to the DVD screen where the Care Bears movie was playing. He rarely points. could this be another gain?
Up next, DMSA chelation suppositories begin.
Wednesday, October 3, 2007
"Hi I am calling from Miami Chlidren's to confirm your daughter's appointment for a speech evaluation tomorrow Thursday at 8:30am?"
INSERT MY ANNOYED VOICE HERE
"Youmean Friday speech evaluation at 9:00am not Thursday?"
"Oh! let me check, yeah, hee hee, Friday not Thursday. Sorry hee hee"
"Fine. Friday at 9:00"
ARE YOU KIDDING ME?
They still cannot get the date right?
(In case you missed my appointmet drama, please see my posting regarding it below)
A quiet weekday night out on the town. My husband and I decide to go to dinner with my FIL and my son. It had been a tough day thanks to the incident I described in my last post.
We head to the local J. Alexander's restaurant. It is a small restaurant that holds a maximum occupancy of about 200. It was busy but not full to capacity last night.
While having dinner I notice a mom struggling with her son on her way to the bathroom. He was about 10 years old or so.The boy was stimming, arms flapping and throat sounds and resisting her redirection. AUTISM.
About 20 minutes later the large party sitting next to us gets up to leave. Another boy around the same age jumps from his chair to the floor, where he lays giggling uncontrolably , arms retracted and in his own world. His shirt read "The Victory School" ( a local autism school). AUTISM
I glanced at my son, 5, who was in his own world watching Clifford on dvd while we dined. AUTISM. He glanced back up at me ,sweetly smiled and went back to his dvd.
I mentioned this "coincidence" to my husband who replied "Those bastards have to pay for what they have done to our kids"
1 in 150 kids have autism and about 1 in 94 boys (mol) are part of that group. I saw 3 in a time span of about 40 minutes in one place alone. What are those odds?
But no, there is no autism epidemic right?
PICTURES USED FROM THE FOLLOWING WEBSITE:
Tuesday, October 2, 2007
Is it that difficult to set appointments, confirm and reschedule as needed?
Must everything autism related be so difficult?
Let me set the scene for you. I visited the Dan Marino Center a couple of months ago for an MRI appointment. I was ready with all the needed paperwork I would need to turn in as I left to begin the ball rolling for my son's speech therapy which I wanted him to take there. As expected, I got the neurologist to write the script for a speech eval and upon leaving I turned it in along with all of the needed paperwork. All of it filled out in clear blue ink, paper clipped and neatly organized in chronological order with the script on top.
The girl at the front desk was pleased and said it would take 3 or 4 days for them to call me to set an evaluation date. 2 weeks later, I called upset as to why I still did not have an appointment. I left a voice mail (because it would have been too good to have a person answer the phone.) I received a call back stating that they were ready to offer me October 2nd (today) as the evaluation day, at 12:30pm. Not a perfect time for my son but I went with it since these appointments are so hard to get. The next day I received a call from someone at the center in regards to setting Dylan's appointment. I replied I didn't need it because I had the October 2nd date.She checked, confirmed and I hung up. I patiently waited for the appointment playing the red tape game. You know, the one where your child needs the services say, 2 years ago but there is a lot of red tape to get through and nothing you can do, so you suck it up and wait? That game.
A month later, today,I let him skip school and stay calm at home in the hopes he would not be exhausted and be able to focus during his evaluation. I planned the entire day around the appointment. In hindsight, I did think it was odd no one called to confirm. I arrived with perfect timing and went to sign in. The girl at the front desk looked at the name and attempted to find him in the "system". When she could not find him she questioned me as to why I was there since it seemed I did not have an appointment. Sigh.
I calmly explained what had happened with the appointment and they did find him, for a Friday appointment. No, I said, it is today. I would have much rather had him on a Friday am instead on a Tuesday afternoon because of his schedule, something must be wrong. She asked me to wait until 1pm when the "girl" got there. Not sure who the girl was.
My son was pretty calm luckily. He only lost it once when the Calliou episode playing on the tv finished. 1pm arrived and the "girl" called me up. It seemed she was just the appointment setter who calmly told me "You don't have an appointment today , you have one Friday. A month ago all the appointments were changed , everyone was called and rescheduled since the therapist no longer works on Tuesdays". This my dear friends, is where I lost it.
I know this appointment setter could care less as to what we parents always go through with these appointments but I had to say it. I had to because every time this happens I get frustrated, take it and walk out in tears after the fact. Not that it was going to change anything but this time, this time I was going to raise hell. If only to feel better afterwards even after the predictable tears. This is how it went;
"Apparently not everyone was called, rescheduled and confirmed. I wasn't. Why wasn't I called? Why, out of all of those twentysomething names, was I not called? This is so unprofessional. Is this what happens as the Dan Marino Center? I thought you all are the best. Apparently not.You do realize how much it takes to get a child with autism ready for an appointment right?
"Ma'am, I apologize, you do have an appointment on Friday." Is all she would say over and over and" I did not mean to inconvenience you. "
"What does that do for me today? I already kept my son from school today, I am already inconvenienced. I know you don't care but I am just letting you know how I feel."
"Would you like me to write it down in a little card so that you remember the time?" "No! I know now I have an appointment on Friday just like I know I had an appointment today at 12:30pm. I don't need a card because I am an autism mom and it's all I do; make appointments for evaluations, for therapies, call this center, call that one, pick up results, schedule therapies, etc. No I don't need a little card but it would be nice if you all knew what you were doing.Nothing I can do or you can do. I know. Friday it is."
Harsh? perhaps. Stuff happens. I know. The poor woman must think I am nuts. She just happened to be at the end of my nice and full autism mom bucket. You know how Jenny McCarthy says in her book our kids come with these buckets? Us moms have them as well and they are big. They match out big hearts. We take stuff and put it into the bucket and once in a while we have to empty them and it's not a pretty sight.
So guess what? I have an appointment on Friday , 9am. So they say. Yet another missed school day but hey, at least I am starting out with a nice clean bucket right?