11/25/09

Attached is a link to audio/article about autism in Michigan. It talks about how michigan is one of the worst states for insurance coverage for services, how annual treatments can be upwards of $50,000 a year, etc. but it also mentiosn the Autism Collaborative Center, Tyler's school, and Dr. Catherine Lord who oversees the the University of Michigan Autism and Communication Center which is the source for both of the studies Tyler participated in.

http://www.publicbroadcasting.net/michigan/news.newsmain/article/0/0/1580195/news/Autism's.Growing.Reach.

On a family front, we all have been going back and forth with colds, coughs, runny noses, etc. since Tyler's second day of school. Even so, we had a monumental moment in our house the other night. All of us had the same dinner. Crazy to most of you, I'm sure, to think that this could be monumental, however, we usually cook 3 separate meals. Tyler is rescricted since he can't have gluten, casein or egg, and Ben is picky and then there is Steve and I. We realize that we have definetly done wrong by Ben and his eating habits but accept that it was out of necessity. It was not until recently that Tyler actually started touching his own food or even being intersted in feeding himself. As some of you may remember, we used to have a hell of a time getting that kid to eat anything so all of our efforts have been focused on just getting Tyler to eat so Ben would pretty much get whatever we knew he'd eat on his plate...therefore his willingness to try new foods was significantly squashed... sorry little buddy. However, the other night...we all ate steak, veggies (ok we did have different veggies) and potatoes. I knew Ty would eat the steak if I could just get it in his mouth without him seeing it since it was something new but Ben is not a big meat eater, he's a carb junkie so getting meat into him is tough. But he ate all of his steak and so did Ty. steve adn I just kept looking at eachother like is this really happening? are we really having a normal family meal. Ty is feeding himself, ben is eating meat and Steve and I are able to carry on a conversation. It's been 3.5 years in the making! We are super super thankful for that!

So it seems we have lots to be thankful for this year.... eating the same meals, going out in public with just one parent, going out to eat with just one parent, the boys starting to play together, being able to get together with family more often. Things are definetly easier and for that I'm very very thankful!

So on that note I want to wish everyone a happy thanksgiving. Thanks for being a part of our lives. Thanks for supporting our journey and most of all thanks for understanding our crazy lives and still standing by our sides.

11/20/09 -

There was an interesting article going around the list serv today. See below..

http://www.thecenternj.com/

While the scientific community will have to validate The Center's findings, the model for assessing homeostatic relationships indicates the"trigger" behind autism is an imbalance between apair of amino acid neurotransmitters; glutamate and glycine.

According to The Center's founder, WilliamMcFaul, a retired business person and not amember of the scientific community, "Because ofits universal applicability, our Life Sciencesgroup has already used the model as a tool toidentify highly probable causal paths for several illnesses and disease entities.

Autism was one of most difficult illnesses The Center had attempted to analyze. If it hadn't been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine.
It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body. It is that wide-spread disruption that apparently results in the systemic problems that encompass the mind and the body characterized in today's 'classic'autism."

He also added, "The use of our model indicates each of the disorders within Autism Spectrum Disorder (ASD) is attributable to different disruptions in homeostasis. We look forward to sharing our findings relative to each disorder with the scientific community."


Wouldn't it be amazing if they actually discovered the cause of autism!

Ok on to other news. Tyler's IEP meeting went fine and we finalized his goals for the next year. I'll share more details on that later, I'm still going over everything. We had Tyler's private speech therapist come into the meeting as well. Our biggest concern about Tyler is obviously that he's not talking and if he were able to talk, his few behavioral issues would likely diminish. So we wanted to make sure that everyone was on the same page in terms of his speech goals.

We had rescheduled speech from Monday to yesterday since Ty was quite full of mucus on monday and not feeling 100%. So moving the day allowed Steve a chance to sit in on speech this week and he really enjoyed it. He said he's amazed at how many sounds she is able to get out of him and how responsive he is to her and how well he knows his roles, etc. and is engaged in an activity. She's really great with him.

Everyone has been under the weather at or house this week so there isn't much sleeping going on, but lots and lots of coughing. It seems that it's all finally subsiding and we are getting better, yeah! Looking forward to a full night of rest.

Tyler is still really intersted in playing gross motor/wrestling type play with Ben. His eye contact and engagement is fantastic.. sometiems Tyler is engaged longer than Ben. They love to jump on Tyler's bed together, both get the giggles and it's such a pleasure to watch.

That's about all for this week. Hope everyone enjoys their weekend.

Here's another masterpiece by Ty. Yeah, I know it's not Mozart or Beethoven but I'm amazed at how delicate he is with the keyboard and how calculated his movements are and how well his fine motor skills are in getting his hands and fingers to work together to get the sounds he wants. It's fun to watch him search for and find just the right key.

It is obvious to me that Tyler has a musical gift and we want to embrace it and maybe if he didn't have autism, then maybe, he wouldn't have this gift, who knows. I also know that autism has made our family healthier in terms of what we put into our bodies being food and supplements, etc. But even with those things, today, I despise autism. I would like to put on some boxing gloves and get into the ring with autism and beat the shit out of it until it no longer have a hold of my son or anyone else for that matter. I hate the decisions that I have to make because of autism, I hate the financial strain that autism has put in our lives, I hate the relationship strains it's put on our family. Not only our interaction with Tyler and each other but our interactions with our family and friends and work and every other relationship we have.. it's all influenced in some way by autism. Most of all, I hate autism for not letting go of my son. LET HIM GO! Let him live a normal life ... he deserves to talk, he's worked so hard. He deserves to play with his brother like normal siblings and he deserves family vacations and to have friends..and Ben deserves it too. I've been feeling quite guilty about Ben lately and the amount of time, energy, and funding we put into Tyler and then Ben is just kinda left on the back burner, not that he's suffering by any means but if only autism wasn't in the picture. My goodness, the boys would be having a ball together right now in preschool, making friends, going to birthday parties, going on family trips, visiting other family members, the sky is the limit. So get out of my life autism, get out... you are not welcome!!! You can't keep my boy forever.. I will get him back.

11/12/09

Let's start with Monday. Monday's are always hectic. I start work at 6 a.m. so that I can end work by the time Tyler is done with school. On Sunday, I had packed diapers and wipes in his school back pack so that I'd have them in the afternoon. I had packed a snack and juice in my car for him knowing he'd be hungry in between appts. So I pick up Ty from school at 1:45 and we race off to speech at 2:00 on the opposite side of town. Speech ends right around 3, we pay the bill and pack up. I get Tyler in the car, get him some juice and pretzels. We now have 15 minutes to make it even further on the other side of town to music therapy. he's snacking, I'm driving... thinking how I need to change his diaper when I get there and I'll just quickly do it in the car, we are a block from the school and it's 3:14 (1 min before music therapy starts). I open the side of Tyler's backpack as we are driving up to the center and the diapers and wipes are gone! Oh no...Tyler hadn't had a diaper change since school and music therapy was another 45 minutes and then another hour by the time we got Ben and went to the bank and got home. eeekkkk.. Steve dropped TY at school so I realized he must have taken the diapers out of hte bag.. grrr.... I call Steve to politely (or not so much) tell him that I was gonna kick his ass for taking the diapers out cause I didn't know what I was gonna do now and it was the first music therapy session and I didn't want to miss it! So i calmed myself, searched the van and found one lonely diaper, yahoo.. quickly changed him and got him inside. P aid the bill there (expensive day) and then went back to my car to call Steve and apologize for yelling at him. He thought they were left over diapers from me taking the boys to the park so he took them out. we are just on such a tight time table sometimes there isn't a lot of room for error.. snow is really gonna mess us up :)

So Monday night was a bit tricky as well. Steve goes to support group on Mondays and although they do have a babysitter there, Tyler doesn't nap since we are on the go so much and he is tired by 6:30, the group goes until 8 so he'd never make it and we really couldn't' afford a sitter this week so I stayed with the kids. Ok, long story short, it was a short night of sleep. Ben's been waking up a lot lately with misc. issues. he actually struggled to go to sleep that night for some reason. Then Tyler started coughing around midnight and that lasted a good 30 minutes. Then around 3:00 I hear Tyler screaming. I run into his room and he's standing just inside his door (he can't get out cause we have a child lock ont he inside of his door). I try to calm him and it wasn't working, he didn't' feel feverish or act like he had a hurt body part anywhere so I lay him down in his bed and grab one of his blankets and lay on the floor next to him. He seemed to be somewhat satisfied with this and laid down.. he kept leaning over and checking on me every 5 mins. Was scared to fall asleep cause I didn't want to miss the alarm and I was a bit worried if Ben woke up upset I wouldn't know it cause I can't hear him from Tyler's room. So I laid there next to Ty, a few times slowly trying to crawl my way but getting caught and then freezing in my position.. so funny if i were on video. I know many parents who talk about crawling out of their kids rooms. ha. Anyway, I was finally able to leave around 4:00 and found myself to then be starving for some reason so I struggled to fall back asleep. My alarm went off at 5:30, I hit snooze until 5:45 when I heard ben yelling that he was ready go get up. Yawn yawn.. where's the coffee.. it would seemt hat the earlier the kids get up the further ahead I'd be but somehow I felt like I was playing catchup all morning. So dropped Ben off at daycare, then Ty at school at 8:35 and then off to work. i was so so tired. Mondays wear me out so If I don't catch up on sleep on Monday nights I'm in trouble. Tuesday I was dragging! Someone at work asked why I was so tired so I explained I had a busy Monday and the boys were up a lot and Tyler was really upset in the middle of the night. She asked what was wrong with him and I said, "i don't know"... cause he can't talk. he cant tell me. If I'm around him when he gets upset, usually I can easily figure it out, he got hurt, or is upset at a toy or something but I have no idea why he was so upset. Damn autism.. makes those things tricky. Same thing situation int he morning. He wouldn't come downstairs and I had no idea why he didn't want to come downstairs. I tried all of the tricks but inevitably I needed him to come downstairs so I could get him dressed and give him breakfast and his supplements so I finally did what I probably should not have and picked him up and brought him downstairs. In the grand scheme of things, when he's 10 I'm not gonna be able to do that so I try to be patient and make it happen on his own will even if he's not happy about it but I just didn't have the time to do it the right way. Would have been awesome if he could have told me why he didn't want to come downstairs. I seriously dream at least twice a week that he can talk and it's so amazing.

OK on to other things. Was looking at a picture book last night with Ty. It's one we got Steve for fathers day with a bunch of family pictures. Anyway, we got to one page and I pointed out who was who and he pointed at the picture and threw my hand up at the wall. There is one big black and white picture of Tyler and one big black and white picture of Ben when they were babies in our room and Tyler was telling me that the picture in the book was the same as the one on the wall.. Yep, sure was! Then we got to one picture and I said that's Tyler and I touched him and said that's you. So then there was one of me and I said and that's mommy and he touched my face. he really comprehends so much.. he's so are of things that people don't even realize.

ben is still really excited to get Tyler talking and he even initiates it and starts babbling to see if we can get Tyler babblign too. it's so cute and I hope he's interest in interacting with Tyler continues.

We are hosting a Thansgiving at our house this year which will be the first event we've held at our house with Ty there since their first birthday party. WE are really looking forward to it and hope all goes well so we can continue to expand our horizons and do a little bit more family stuff. We know everyone misses us and we miss them and definetly want to be able to be involved in more things as a whole family rather than separating which is how we've managed the last couple of years.

11/9/09

Busy week this week! First off, the intake at the Autism Collaborative Center went great, staff were very friendly and we felt very welcomed. It also was so good as always to talk abotu Tyler and his history and how far he's come, I love thinking back to where we once were. So we actually start music therapy, today, yeah! On Mondays Tyler will be in school from 8:45 - 1:45, in speech therapy from 2:00 - 3:00 and then off to music therapy (mom may have to speed!) from 3:15 - 4:00 then back today care to get ben and home for dinner before Tyler passes out from exhaustion! So we are hoping to eventualy fill most of his afternoons with more "therapy" type stuff so that we can enjoy family tme on the weekends and not feel so much pressure to ensure Tyler is doing "therapy" type stuff. Anywaay, so music therapy today, tomorrow we have another appt for Tyler to plan more after school activites and Wednesday we have an IEP (individualized education plan) meeting at school for Tyler; these occur annually. I actually reviwed his current IEP in preparation for the intake appt at teh collaborative center and since it was a year ago, it was fun to see how far he's just came in that year, yeah Tyler. Anyway, busy week moving forward for him. Once we get this week squared away, we are gonna get Tyler back into the DAN doctor.

In terms of the weekend, the boys are doing great. Actually had a wonderful moment of independence. For the first time ever, I took the boys to the park with just me to supervise, then we went out to eat (first time alone)and then to the store. It was great and the boys were great. slowly but surely I feel like things are getting easier and more independent where it's not so hard to get out of our house and leave the safety zone.

potty training is going so/so. Tyler is still going once or twice day on the potty but Ben has turned back into not wanting to go. IN fact, Ben has been very defiant lately on about every issue and we are trying to get him a lot of postiive attention but it's tough because he's constantly doing something that unfortunately gets him negative attention. I do believe he's becoming more keenly aware of Tyler's condition and perhaps is a bit jhealous of that situation as well as normal 3 year old stuff and I think he may be getting bored at daycare. SO we are gonna try to address all those things and make sure he's getting one on one time with parents and doing some things for just Ben. most sib shops (support groups for siblings of kids iwth autism) don't start until age 5 so we have a bit to go before we can do that.

Ok that's about all for now.

11/3/09

wow.. it's November! Unbelievable how fast time flies by! Tyler did really well on Halloween. it was much colder this year than last so he didnt' last as long doing the actual trick or treating but we brought the wagon and his books so he was out with us for about 45 minutes and then Ben wanted to go home. It was awesome to all be otu together. We just left candy for the trick or treaters on our porch adn off we went as the Wizard of Oz! Tyler was not at all fond of his "mane" for the cowardly lion which is why he's crying in the pic i had just pulled it off his head, he's not so fond of hats on himself or other people. This was the best halloween we've had as a family so we were very very thankful.

Saturday morning, the coolest thing happend. The boys were playing together, it was awesome.. I even woke up Steve to she could see it. They were wrestling together on ben's bed. both had the giggles. We want to continue to encourage this interaction so with the exception of a headlock and a head bang against the wall last night, they both seem to really enjoy wrestling.Trying to show Ben how to be a bit more gentle as he tends to be the aggressor...we don't want Tyler to think of playing with ben has hurting. But it was awesome to see it and all the giggles.. a piece of normalcy :) Oh and I'm pretty sure Tyler said "ball" on Saturday which was also got me pretty excited.

Sunday marked a milestone for us.. both boys, played outside, independent of us, in a functional way. Those things have never happend before....it was unbelieavable.. Dad, Grandma and I all just watched in amazement..almost like a sheww.... we made it :) Ben was climbing the tree adn playing in his jeep, Tyler was playing on the slide and with the frisbees and climbing the sandbox. The indepeendence they've gained this summer is really great.

Both boys still doing really great on the potty..Ben is keeping a dry diaper all day at daycare. Tyler is sitting on the potty now for up to 2 minutes at a time and doing very well and goes potty sometimes even. He loves to watch the water go down the toilet after flushing.

That's about it for now.. I have an appt tomorrow to get Tyler enrolled in the collaborative center to get him ready for music therapy and hopefully more services in the future.