12/17/09

So I came accross this picture of Tyler the other day. I remember exactly when this was taken, I had went to the store and Steve took this picture while I was away. The thing was.. this picture kinda warmed my heart when he showed it to me. No, I'm not warped, but this was my son for the first 3 months of his life. Steve captured exactly who Tyler was at this time in his life. This is how he looked when he wasn't sleeping most of the time. He had terrible eating issues and now we know that much of it was caused by his autism and the biomechanics involved with his eating. Different medications, switching to soy formula and eventually stopping breastfeeding all together cured the probem. Gosh..there were so many signs, if only I knew about biomedical treatments sooner. I worried about autism at 3 months but didn't learn about biomed until 18 months. Anyway, wanted to share this picture. This was my boy, in pain, but still beautiful and as his onesie says.. a little heartbreaker.

Another long period of time between posts, sorry about that. The website was blocked for a while by the firewall and then this has been a crazy week. My grandpa had major surgery, I got sick and was in the hospital and then last night, Tyler vomitted a few times was not well. Welcome to winter right! Not to mention we haven't had our normal visits by grandma lately because she's been really sick for the past month. Things just haven't quite been the same without her in our lives.

So let's see, I'm not sure I can remember everything I wanted to say. Tyler seems to be more consistently saying "ma ma" when he wants my attention, I'm lovin' hearing that! He also seems really super chatty lately. Just babbling up a storm, I love it when he goes through these phases, I always hope that we are gonna get a real word or two :)

We are venturing out more this holiday season than we have in the past and our beginning to plan on how to set things up for successful trips, etc. All the holiday letters/notices are going out on teh autism list servs about what to expect, not to expect. For example, opening gifts is so much for for most kids and so much fun for adults to watch them, however, Tyler isn't itnersted at all. it just puts him on sensory overload. He doesn't understand why toys are wrapped in paper, why he gets so many new toys at once and why there is so much commotion at once. So we rarely wrap his presents, if we do wrap them, we let Ben open them. I often try to think am i doing this for me or for Tyler. Tyler doesn't care if they are wrapped so I shouldn't either. i also want to make sure whereever we are when peopl eare opening presetns, that Tyler is set a bit back from all teh commotion and has a room to go if he needs an escape. So with everwhere we will travel this holiday season, I try to think of where that room will be, where we'll sit, how I can make sure to see and be a part of the events with Ben while also meeting the needs of Tyler. I also worry now that he's bigger and moer interested in eating about him getting a hold of food he's not supposed to have and when the event is not held at my house, what food is out and about is more out of my control which means I have to be more closely monitor Tyler and his whereabouts when snacks and meals are set out. However, if we think and plan for all of those things in advance, it tends to go a lot smoother!

The boys also have their first official teeth cleaning and exam next week. Definetly nervous about that one. Steve is gonna meet me at the dentist and wait with each one in teh waiting room while I'm with the other one int eh exam room. We've been working with Tyler on opening and closing his mouth when we ask him too. We also have to remember that Ben needs antibiotics in advance of the appt due to his VSD so there is lots of planning just to go to the dentist.

Other than that, our hearts just go out to our family members who are under the weather,our many friends who are either out of a job or soon to be with out a job, friends who are having trouble growing their family and any one else facing hardship this holiday season. I am in a much happier place this holiday season than last and am really appreaciate that I have two beautiful boys and a wonderful husband to celebrate the holidays with and that we get to share our joy with more family this year is just icing on the cake.

Happy Holidays!

12/4/09

So Steve and I often tease each other that we really didn't need the there one to make our children.. Ben is just like me and Tyler is just like Steve. It's kinda been a joke since they were born. Anyway, Ben did the funniest thing the other night that would be something I would do and we could not stop laughing. It was Wed, family moving night, we were watching Ant Bully. Ty was in bed (non-napper) and Steve and Ben were on the pullout sofa sleeper (we pull it out for movie night so we can all snuggle) and I was in the kitchen cleaning up from dinner. I heard Ben say something to Steve... and anyone know that knows Steve knows he has trouble doing two things at the same time and since he was watching the movie he didn't quite respond to Ben quick enough and all the sudden Ben goes "WAKE UP".. if only I could give you audio of how he said it.. it was so funny.. and the lag time of Steve's response was really only like 3 seconds but that was too long for Ben to wait. I was laughing so hard.. I often tell Steve to hurry up and ask what takes him so long to respond when I ask him a question so it was hilarious that Ben called him out for the same thing. I said.. he's definitely my kid!

Ok on to Ty.... I mentioned a few posts ago I'd give some specifics about the goals that were set for him at his IEP. Here are some.

First we were asked to list in strengths and his weaknesses. In terms of weaknesses we obviously were most concerned with the fact that he is non-verbal at this point. Also we want to get his signs cleaned up as he tends to scroll, his fine motor skills are still delayed and he doesn't seem to have much interest in his beers. We also want him to work on 2 step instructions, i.e. go get your hat and your coat and work on daily living and self care, like putting shoes off and on and zipping coat, going potty, etc.

No on to specific goals... for daily living it was only have 0- 1 accidents though out the day and maintaining a dry diaper, washing hands independently and completing arrival routine with 1 or less prompts. Arrival routing is taking off coat, putting it in cubby, putting lunch in box, etc.

In terms of fine motor skills, Tyler demonstrates abilities of a 22 month old with one skill being a bit older. So there are goals to imitate vertical and horizontal lines, hold scissors and cut forward, etc.

In terms of speech one of the goals was to respond to his name being called without a physical prompt and to gain attention by physically tapping or verbalizing to the person. These two goals we had a bit of a disagreement about. I believe Tyler has both of these mastered he just may not always be motivated enough to follow through with the request. For example, I can be in the kitchen and Tyler can be 2 rooms away and I can say, it's time to eat and Tyler will come running to the table. I can be at the table and he can be playing and it's time to clean up dinner and i say Tyler come take care of your plate and he does. Tyler its time to go wash hands and he'll alk to the bathroom. There are many commands I place on Tyler where he does respond even if he's doing a preferred activity such as his piano or something. sometiems he voices his unhappiness with my request but he does respond. Same story with gaining attention. I think Tyler does an incredible job at getting our attention when he wants it, with both hand pulls, body position and vocalizations... I could give numerous examples but if he's not doing it in school and they gave an example of this then we agree it needs work so we kept this on as a goal. Other specific speech goals were in regards to Tyler producing 5 different vowel sounds (imitate them not just spontaneous) as well as one consonant sound "b"....we've been working hard at home on the "Mmmm" and the "BBBBB" "lllll"" sounds at home.

There was also some goals for his sign language to use signs to label items and also to demand items. There were goals about peer interactions and gross motor imitations.

In general we were very happy with the IEP proces and look forward to his accomplishments this school year. Maybe he'll even make it to a level 2 classroom next year. We'll keep plugging away.

We are hoping to get Ben enrolled in preschool next fall. We were considering whether ot do it this year since he seems advanced in some areas but also seems to need a bit more structure/rules in others but due to scheduling, finances, etc. we were able to make it happen. Funny thing.. he was at Ty's class one day, I can't remember why we ewere there but we sat in on the first part of class one day so ther eewas Ben and then about 6 other preschoolers who had Autism. It was circle time and Ben was the only one that was having a hard time staying seated in his chair! He's just not used to not being able to play with or go where he wants when he wants so we are going to try to work on some of that at home until we can get him into school.

Really looking forward to spend more time with family this holiday season. Love to all!!!

12/2/09

Hope everyone had a great thanksgiving, ours was fantastic. Ty was a trooper! On Thursday we celebrated just the four of us which was really nice. On Friday, we hosted a Thanksgiving for Steve's dad's side of the family. As i had said before, it was the first family function we had hosted since the boys first birthday party. Tyler would just get overwhelmed with more than a few peope in the house and we'd spend our time helping him get through it and not being able to be hosts so it wasn't worth it. His tolerance has increased and his frustration levels have decreased so we decided to try and see how it goes. I had Steve drop run an errand with the boys a little before we expected everyone so I could do a final clean up around the house. This was probably a mistake in judgement on my part since Steve returned home at about the same time the guests were arriving. Also, Steve was blocked out of the driveway so the boys had to enter through the front door instead of the garage door. Tyler is used to entering through he garage door, so this alone can cause him to be confused and get upset. In fact, if we ever miss a turn or something and have to turn around or forget something at daycare and have to go back, he gets really upset, not understanding why we are doing things differently. So many notes to self in this blog (practice going through front door, go different routes, etc.).. see there's so much to remember in the life of autism and how to "fix" behavioral issues. OK anyway, back to our thanksgiving celebration...

Tyler had to enter through the front door and he was whimpering a little when he walked in. I took his coat off and his shoes and got him settled and went about greeting people, etc. I was in the kitchen soon after doing something and he came in and was on the verge of tears and you could tell he was just looking for me to help him make sense of all of it and was getting more and more worked up not finding me since we had a house full of people. I took him upstairs to get him out of hte commotion and get him settled. While we were preparing dinner, grandpa went upstairs to hang out with Tyler and make sure he was ok. Shortly before dinner, Tyler came back downstairs and was fine, in fact he was fine from that point forward. He did phenomenal. We had my sister in law and her husband and my nieces stay the night and he did great with all that. They were all there in the morning and he did great with all that. He used to not even be able to eat with anyone new near him let alone a big group of people. He'd bang his head when it got too overwhelmed and if all else failed, he'd retreat into his own little world, block out the rest of us and never even look our way or respond to noise, etc. He was so interactive and happy and engaged, it was just awesome. And of course Ben was on cloud 9 with all the people to give him attention and play with him. We really need to adopt an older child to play with Ben:) Hopefully one day though. In fact ont he way to school/daycare Ben and I were pretend sneezing, a little game we play. Tyler was smiling at us so I said, ok it's Tyler's turn. He opened his mouth repeatedly but nothing came up. Ben goes, he can't talk! I said he's trying to talk and one day he will be able to, won't that be cool. Ben goes, yep, and then he can see "hey ben, let's play GI Joe's".. lololol..oh how I hope that happens! ANyway there was one other time Ben yelled at my cause Tyler didn't talk. Oh they were in the bathtub and tyler wanted me to throw his foam letters into the tub and I was asking him the color of oen of the letters. Ben, in a very annoyed voice, says, "HE CAN"T TALK!".. I said yes he can, he can talk with his hands and he knows how to sign "green".

The rest of the weekend was just as spectacular, wish I wouldn't have waited so long to write in the blog because I know I'm forgetting some things. We took the boys to Urban Toddler (play location nearby) and they have a bunch of play areas/rooms set up. We were playing in the kitchen. Ben was playing with the babies and so I was too, Tyler wanted to spin the dishes of course, his fav stim. So I started getting Tyler to play with us in imaginary play. I was surprised as to how quickly he was into playing with us. I asked him to give the baby a bottle and he did. I pretend drank from a Little tea cup and so did he, I feed the baby with a spoon and asked him too and he did. See he used to do this but only with a very highly reinforcing reward for doing so and also through gritted teeth and tension, hew as very relaxed and happy to do it this time. It was just one of those moments when I realized how far we've come since the beginning of that study about 2 years ago.

Tyler had to miss two music sessions due to illness so we are getting to do a one on one session with one of the music therapists next week, looking forward to that. So we can talk to her about Ty's interests in the keyboard and how we can embrace this and keep him engaged with us through music.

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.