12/28/09

I hope everyone had a very merry christmas! ours was pretty good. I should check the blog from a year ago and see just when our crazy stretch of illnesses began cause I fear we have begun. Last week Tyler was vomiting on Wednesady, then Steve on Friday and then this past week, I was vomitting on Christmas night and then Ben on Saturday and then yesterday I caught a cold. Is this a prelude to another bad winter? I really hope not!

In terms of christmas day, the boys did great, Tyler again attempd to open presents and was never once overwhelmed by any of the chaos. I attached a couple of pics from christmas.

Christmas night after the boys went to bed but before the vomiting began I was going through old pictures on the computer and came accross a few of these ones of Tyler and a very intersting video. The one pic of the newborn baby is Tyler. It's the pediatrician's hand. We were very concerned about the rash on Tyler's body which we were told was common in newborns, however, Tyler's never went away. Picture all the way up until we began the gfcf diet had him very rashy. It's amazing how the diet cleared that up. We often wonder what supplements are workign which ones aren't workign, which pieces of biomedical help, etc. in an effort to do whatever we can to keep costs low, but I'm certain the gfcf diet has been extremely helpful. As for the video, hopefully I can get it posted soon, but it was an eye opener for me.

I was watching a video from August 2007, so the boys were about 17 months old. The video was really of Ben, dancing and playing with a ride on horse, he is such a ham. However in the video, you see Tyler playing, then you see him run by the camera and towards me and say Ma-Ma, Ma-Ma and run up and hug me. It was amazing.. I watched that portion of the video repeatedly. I don't remember Tyler babbling, I don't remember him being "with it". I just remember always worrying something was wrong. I told my aunt of my discovery and she said she remembers talking to me about it. She said she remembers we were thinking, maybe he'll come out of it, maybe it's just a sensory issue, maybe...I can't tell you how many questionnaires I've filled out saying that he didn't regress, but clearly in this video he was saying ma ma, intentionally..s miling and running to hug me. 1 month later, 18 month vaccinations given while Tyler was sick and on antibiotics, tyler lethargic for 2 - 3 days and vomitting... was that it? The moment that could have changed things? Don't get me wrong, Iw as worried about Tyler and there was definetyl something wrong with him very early on but clearly the 12 month and 18 month vaccinations caused him significant hardship and now after watching that video, I realize regression. Maybe I just didn't want to admit it at the time. The good news here.. children who have regressed at some point, seem to have better success with biomedical improvements, at least from what i've read so looking at the positive side and since i can't take anything back, I guess that's all I can do. I can say that I could not stop crying when I saw that video, I wanted to go back to that moment and embrace it, and hold him and never let go and not get those 18 month vaccinatiosn and continue our path to a recovery for him and who nkows if things would be different now. It also made me have empathy for all of our dear friends and those I do not even know, who had normal/typically developing c hildren and then suddently lost them to the world of autism. Devastating, I can't imagine. My heart aches for them cause TYler had lots of issues but just seeing this video and glimpse of normal made me cry..can't imagine having a whole year of a normal child and then suddenly have them dissapear into their own world.

Anyway, on a lighter note.. the boys were amazingly good yesterday and we keep pushing the envelope with Tyler and getting out as a family and doing "normal" things. We did a major shopping trip to sams club yesterday and both boys were awesome. We went to pay at Mcdonalds first to wear them out a bit and Ben was on cloud 9 playing with the other kids and Tyler tolerated the chaos very well, seemed to not care and enjoyed just running in circles in all of the chaos. They were so good. We decidd to start runnign more normal type errands and visits with both boys as I think Tyler is ready.

Happy New Year Everyone.

12/24/09

Ty's sleep habits are kililng me lately.. up late one night, up early the next. I wonder if he's going through a growth spurt, and he wakes up achy. He has definetly been eating like a horse! This morning he started to chirp around 4 a.m., I'm a light sleeper so I can't fall asleep if he's babbling, and then by the time he fell back asleep I was wide awake. Good thing he's so adorable :)

Have a merry christmas everyone.

12/23/09

Merry Christmas Eve Eve! So lots of good news to report. The boys had their first official dentist appt yesterday and they did great. We practiced the "open" command with Tyler a lot so he'd be prepared to open when the dentist asked him too. He wasn't too fond of the light in his eyes but say through a good teach brushing none the less. The doctor was very happy with Tyler's teeth. Ben also was good, he likes doctors for some reason, however Ben's teeth aren't' as great. He was blessed with the Loomis teeth which means he has big teeth and they are all squished together. He'll likely eventually have to have some teeth pulled to make room for his bigger teeth later in life. Not a lot of room in his mouth. Also since he's a carb junkie and that type of food tends to "stick" more to your teeth, he also has a bit of staining but all and all a good visit. It's strange making dentist appts. I feel a bit like a genetic mutant.. Hello yes, I'd like to make an appt for my boys. Ben has a VSD so he'll need antibiotics before the appt., can you call that in? Oh and Tyler has autism and is nonverbal, he may bite fingers and if given a new texture/flavor, i.e. toothpaste, he could possibly vomit. Lovely..sorry boys, I swear I was a very protective pregnant person and followed all the rules. So the dentist did follow my suggestion, as soon as Tyler as given a bit of toothpaste he gagged, so the dentist rinsed it off and just used water.. much better for Ty.

We also had a very peaceful Christmas with Steve's dad's side of the family. First time that we didn't at all feel anxious about Tyler once we were there. Tyler did fantastic. Last year they had kind of sectioned off a room for Tyler when he gets overstimulated and also Tyler and I sat in that room during present opening so we weren't right in the midst of the crazy. This year, Tyler was fantastic..sat in the same room with everyone else, never once needed to 'get away" or any of that. He even attempted to open a gift which he's never seemed interested in before. It was just so much fun to attend a gathering and feel like a normal family. Everyone had such a good time. Tyler has made leaps and bounds in terms of his threshold for stimulation and new environments, people, etc. compared to a year ago.

Which brings me to last night. I've said this many times in the blog but I can't begin to emphasize enough how heartbreaking it is to have a child who is nearly 4 years old that cannot tell you what's wrong. Last night around 9, Tyler started to cry. I went to his room and he was beside himself and very adamant that he wanted to get out of his room. I struggled with it because we have always made the boys stay in their room/bed when they awake during the night so that they don't feel they can just wake up and go play or do something else or fall asleep somewhere else. But with Ty this time I wasn't sure what was wrong and my being nearby was not consoling him so I thought maybe he was trying to tell me something and figured since he couldn't tell me he could show me. So I let him lead me downstairs, he was still crying and acting very much inconsolable. I had worried at dinner that maybe he ate too much so I thought maybe he had a belly ache.. I tried to rub his belly and that didn't work, we got him some juice wondering if he needed to poo but he woulnd't drink it. i had checked for vomit before i left his room and nothing and he didn't have a fever so I was ruling out any of those issues. Grr... he then walked me to the kitchen and went to grab his foam letters, my first indication that it may be a bad dream vs. not feeling well since he was somewhat interested in playing. I told him no, it was not play time, it's sleep time. So he was still crying in my arms and I told Steve how much it was breaking my heart. how would I know if something was terribly wrong where I should take him to the hospital. That's when I realized only time would be able to tell me. I couldn't physically see a problem, so if he cried non stop for a good 2 hours, I figure that'sa good enough indication that something is terribly wrong and that would be my indicator. So under the assumption he had a bad dream which is why he didn't want to go back upstairs, I knew I needed to find a way to slowly get him up there. He has a phone/toy he likes so we worked on the stairs.. Go up 2 stairs, play with phone, take phone away move it up 2 stairs, get Ty up 2 stairs, play with phone. We did this all the way up the stairs, about 10 - 15 mins I'd say to get to the top.. with a bit of whining/fussing but not all out crying. We got into his room, and had his light on etc. so he wouldn't be too scared. Then I had pulled out the 2nd crib mattress which we store under his bed in case we need to be there or in case he vomits on his, we have back up. SO I snuggled him on that one and sang to him and then for the first time he was totally calm. Ok time to transition him to his bed.. upset at first and then again withs inging consoling, better... So I laid down on the floor for a bit. after about 30 mins i had to pee so bad I couldn't stand it but he had kept checking to see if I was there so I knew he'd notice if I left. I gathered up the blankets to try to make it look like i was there and snuck out, whew.. Made it and finally got to pee. Got into bed...15 mins later Ty was crying again. I looked at Steve and said your turn, he said let's see what happens and good thing he did cause a few minutes later Ty was silent and then slept the rest of the night. When Ben wakes up in the middle of the night, he'll say, I had a bad sleep story, or I lost Sarah (the dino) or I need a drink or my belly hurts or whatever so it's very easy to remedy the problem and get everyone back to bed. With Tyler it's such a crapshoot and I always fear I may be downplaying what could be a big issue because I don't know what's wrong. I HATE feeling that way.

OK that's about all from us. Have a Merry Christmas Everyone

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.