7/30/09

Yeah, urine test was a success, went off without a hitch, except for the little guy didn't go pee pee all night so Steve had to wait around for him to go potty in the morning. Which means yesterday we started him back on his supplements. Who knew that melatonin made such a difference for him! He was tired by 8 and went to bad, back to normal. We also started the b12 shots again last night, dosage is a bit different. He gets 10 ml every 3 days now instead of 5 ml every 2 days, I'm not so hot with math but I think that means its about a 25% increase. There are risks of insominia with B12 shots so we are hoping that doesn't happen.. last night went fine. we started him on the other new supplements too, lithium and magnesium to hope to help with his chewing and then fish oil, vitamin D, and TMG. So let me try to get it all right..

Ty's List of Supplements:
Spectrum Complete (new DAN Doc probably gonna change us to something else soon)
Calcium
vitamin c
vitamin E
B6
Digestive enzymes
probiotic
melatonin
Lithium
Vitamin D drops
Fish Oil
Magnesium
TMG
B12 injectinos
and soon to be Ferinsol (can't seem to find it in liquid form yet)

Mind you some of these things he gets multiple times a day so with his schedule of school and eating habits, we have to find a way to get these all into his system and if you add it to food, drink you gotta make sure he eats/drinks it all but it's a fine line cause if you don't put enough liquid in a cup to kind of dilute the taste of the icky m edicine, he won't drink it but if you put too much and he doesn't drink it all well then he's not getting what I need. You get teh point.. Woudl eb much easier if we could just give him teh pills to swallow... Also makes it tricky if you have Ben or someone distracting you as you are tryign to mix his medicine, someimes I lose my place as to what I've done arleady. Now I set everythign I need on teh counter and then put the bottle away as I use it so that if I'm interrupted I don't lose my place.

This also brings me to a reminder of the overwhelming cost of biomed therapy. Our costs with urine tests, doctors appts, shots, etc. this week alone were $500. So when you think we just talked about adding speech, music therapy and trying to get a studen to work with Ty after school, well it just can be overwhelming when you think about it all in a lump sum.. I try to look at it piece by piece... it's much more tolerable.. Oh that was only $100 no problem.. $80 per hour.. we can do that....$125 food bill....check.. it's just the whole picture that is tough so I just don't look at it that way, it helps :)

So.. Last night was our first weekly "Family Movie Night"... we are all home at normal hour on Wednesday nights so we decided ot make it family movie night. We rented a family movie (BEE MOVIE) and made a bed on the floor in the living room and had popcorn. We knew Ty would not be itnerested but we were just hoping that we could get him interested ing playing something while nearby us or to paricipate in parallel play sort of by watchign a video he likes on his dvd player. He was just getting to tired and overstimulated to participate.. after about 15 minutes of me getting up/down/up/down/up down/ to try to find a way to get Tyler happy but still have steve and I be able to hang out with Ben for movie night, Steve decided to take Ty upstairs, they cuddled for a bit and Ty went to Bed. We try to make things normal for Ben, we really do. And sometimes Ty just needs a break from everything so he can unwind and forcing him to participate would have just made it a nightmare for everyone... so all and all we still consider movie nght a success and hope that each week, it will get a little more familiar with Ty and hopefully we'll find a family move he likes at some poitn and hopefully we can all one day sit on the floor and eat our popcorn and watch together.. hopefully :)

So tomorrow is orientation at Splash Camp.. Ty and I are going together and then Steve is taking Ty back to daycare so I can go right to work after orientatino. I'm looking forward to it but of course also anxious. It's so hard to leave your child with complete strangers.. especially someone like Tyler where I always worry people won't notice something liek when his shoe was bothering him or.. I'm worried someone new at school was working with him yesterday because his lunch bag still had a full container of milk. We send a container of milk and then his sippy cup and they may ahve thought he draknk from the container which has a sor tof straw but it dosen't actually get milk out so it has to be poured..anyway, if he tried to drink like that he wouldnt' have gotten anything. it killed me to know he didnt' have anything to drink until he got to daycare at 12:30. we leave home at 8 on school days so he wont 4.5 hours without fluid. Anyway, those aer the things that make me nervous, he can't talk and doesn't always express his needs especially when it comes to food and drink. I know he'll be in good hands in fact we found out that our day care lady's daughter's friend (pause so you can get that all) will be one of the aides working with Tyler's group so that's kinda cool. Small world right!

There are all kinds of news articles about diets and supplements not actually helping autism.. this story has been misrepresented so if you hear of anything or have any questions, please don't hesitate to ask.

Think that's all for now.

P.S. We are winning the battle with Ben on food. he's been on a hunger strike all week and is starting to cave in. Miss Karen made him 1/4 hambuger, peas and something else for lunch yesterday and he refused to eat.. so at snack time when he said he was hungry she offerred him his lunch and he said he'd wait til he got home. I think he thinks that one of us would eventualyl give him what he wanted but we aren't. We are giving him very small amounts of food we know he likes and then food that we want him to try.. he has to eat the food we want him to try before we'll give him more of the food he likes. He's been pretty much fasting since Monday but we are seeing some changes today. Miss Karen and I talked this mroning about what foods I'ld like him to be eating for breakfast or at least try. I said protein! That kid needs protein. So todya she made turkey bacon and gave him half a slice and then also gave him 1/4 waffle (he usually eats 2 waffles) so he asked for more waffle adn she said you have to eat your bacon so he did..then he got more waffle. It's a circle. we need him to eat well so he has more normal bowel movements and his tummy doesn't hurt so then we can potty train him.. So.... we are making headway.

7/28/09

I'll start with the bad news today so we can end with a bunch of good news:) Tyler is beside himself with out his supplements, literally bouncing off the walls. The kid needs his melatonin, hee hee. Last night around 8:45 he was honestly spinning in circles, over and over and over.. Iw as so worreid he was gonna get dizzy and fall and crack his head. My attempts at distraction to toys or books was not working and so I put him to bed. He's still in a crib and he has toy sin there so I figure at least he's safer in there and hopefulyl he'll start to wind down. Last I heard his toys was around 10:30 so I'm assuming he finally fell asleep soon after. Shew.. He was not very easy to awaken this morning and then it's really hard to get him to eat breakfast right away cause we gotta rush out the door. School gives him a snack but then he doesn't get lunch until he gets to daycare around 12:45 so breakfast is improtant! Anyway, we are donig the urine tests tonight and then can get him back on his supplements tomorrow.

Ok on to the good news.. I mean great news. I found out yesterday that my flex spending and health reimbursement accounts with reimburse for speech therapy costs for Tyler.. YAHOOOO!!!!!! I also found a new therapist.. The oversight speech for school recommended her and so did Carrie so I figure she's gootta be good. She is accepting new patients and meets with them one time per week at her home office which is near my work. So we calculated it out and we have enough money in those accounts for 4 months worth of speech so that will take us thru most of December once we get started (won't start til Sept)... we are super super excited we foudn an economical way for now to get Ty into see an excellent speech therapist. Let's get that kid talking :) He tries so hard. Ben and I were cheerign him on today. I was trying to get Ben excited abotu TYler talking too, so we were clapping and saying yeah Tyler, and having a godo time with it when Tyler was making sounds. So our next steps... finding a music therapist.. that research is in the works too. YIPPEEEE....


Ok so as if that's not good enough news, I am in heaven with this new doctor! Get this.. he communicated with me via email.. HALLELUJAH.. If any of you know me well, I don't like phones very much and never really have a lot of time to talk on the phone unless I'm coming or going to work and then its' not typically business hours and then i'm either at work where I shouldn't be on personal calls or at home where there is mass chaos in the background so I was super excited to see an email from the new DAN Doctor/pediatrician in my in box this morning. It had a summary letter of the appt of both boys as well as the inital blood work results we had done for Ty.


Ok so the summary of the letter is.. Tyler is a petite boy.. his weight in the 5th percentile and the height in the 25th percetntile. THe doc say's its fine, he gets an adequate diet and at this point we should not worry too much about his intake (we always worry about this with both boys). So his impression was that he's a 3 year old boy with history of autism and nonregressive enceaphlopathy (darn small head.. those two could not be any more different, Ben's head is in the 90th percentile!) He has significant apraxia issues and a lack of interest in peer. He believes Ty is doing reasonably well and is doing blood tests and urine tests to look for metabolic insufficiencies and oxidative stress, food allergies, etc. For the chewing, we are starting him on lithium and magnesium and adding vitamin D and fish oil. Also, adding back B12 as previously stated in addition to TMG. His prelimanary blood work also came back and his iron came back low so we'll start him on those drops as well. Ok so you probably wonder where is the good news in all of that. The letter begins with this......History of developmental delay and currently has symptoms consistent with MILD AUTISM...... yes, that set the tone for a very happy letter in mind mind. We are very very very very very happy we made the change to the new doctor who is giving us much more organized planning and feedback than before.

Oh and on our daily bike ride last night, one of the neighbors said Hi, i told Tyler to say hi and he kind of smiled like he was being stubborn, i said Tyler say hi and then he waved. The neighbor commented on how well Tyler seems to be doing and said great job guys to us.. he said it's the first time he's seen Ty smile.

oh and again just so you don't think Ben is being left out, he's doing phenominal (except for potty training) and enjoyed some time with me at the toy store (we both were addicted) and grocery shopping this weekend. Last night we played Huggasaurus and were roared and snuggled.. he's such a snuggle bug.

7/27/09

So what a difference the supplements make! we stopped Tyler's supplements, per doctors orders, on Friday. We are supposed to keep him off supplements and juice until after we do his urine tests on Tuesday. Tyler didn't fall asleep until 10:30 on Friday night. On Saturday morning, he was playing fine but definetly did not seem like him self. He was a bit more spacey than usual.. by Sunday he had stopped babbling which he had been very chatty the whole week. He also was very restless and had a hard time sitting still long enough to eat. In general, you know eating as been an issue but I haven't seen him rock in his chair since we first started the study, I don't htink he was trying ot bang his head and luckily he's tall enough now where he won't but he was rocking a lot in his chair. I think thats the biggest change we've seen, other than the sleep patterns is the restlessness..whihc was already quite high to begin with! Anyway, here is a pic.. by the time we got the video he was abit more settled then when he first began rocking.. I actually had to hold his chair in place so he wouldn't flip over. He also was banging his feet against the chair when he wasn't rocking. You'll also notice he has a support at the table, i.e. thomas lap top. Usually if he has a support at the table, he's not at all restless. It was so weird to see the regression which I would say took us back over a year.
Steve and Grandma took Tyler horseback riding again and I have a few pics and some video. Tyler started to get upset as they pulled up to the facility so Steve was a bit anxious that he wans't going to go well. Steve put a lot of supports in place to get Tyler into the facility without melting down and the staff there are also wonderfuly supportive. They said by the end of the ride, he was doing great and trotting around and giggling while he bounced up and down! he also really enjoyed feeding the horse carrots and asked for more carrots to feed teh horse by going to the bin where the carrots were kept. We've since discussed the sign for carrots so Steve can use that next time to teach Ty the carrot sign.


Ok back to the supplements.. this is the first time we've removed the supplements since beginning them and are convinced they are making a huge difference. we look forward to the next steps of adding the new supplements. This pic shows Tyler chewing on his shirt which has become his favorite past time. Although this is common with kids and autism, we are trying to find a way to extinguish the behavior. we talked to OT a bit about it and she mentioned how they somtimes use chewing gum as it's a socially acceptable way to get that oral fixation..I'm not 100% convinced Ty is ready to chew gum. So we also talked to teh Dan doctor about it and he had some ideas of supplements to try so I think we'll go that route first before introducing chewing gum. Some kids have chewy tubes, bibs, etc. but it's not a very socially acceptable way to go through life so if we can find a way to stop the behavior, it's is obviuosly preferred.


I think that's all for now. Big week, urine tests, new supplements, starting b12 shots again, last week of preschool and orientation for splash camp.

7/24/09

Yeah... the doctor's appt went well. We are both happy we decided to make the change and have all in one shopping with Tyler's DAN doct and pediatrician, etc. If you want more info on the new pediatrican, you can go to the following link. http://www.integrativepediatrics.net/

We reviewed Tyler's history, treatments, diets, etc. All DAN Doctors know and parents too that it's a crap shoot, you never know what the right comination is. So he looked at Tyler's current supplements and decided to have us do a few more tests. What's great about this pediatrician is that they had the appropriate restraints necessary to ensure a safe blood draw, which was very helpful since they had trouble gettign blood at first (poor ty). Ok so the plan is to stop all supplements, except enzymes for the next 4 days. Then we are going to readminister the urine tests and He'll evaluate the data and we can then reevaluate Tyler's supplements, and go frmo there. We already know we are adding about 4 new supplements... magensium, ProDHA, VidaminD and lithium to try to compat some of the issues we talked about today, i.e. chewing on clothes, etc. He also wants us to start back up B12 injections and add to it TMG he said these two medications go together. We've had TMG sample at home to try already. From what I hear it's supposed to help with speech.. same as B12 which leads me to my next topic.

Brace yourselves.. the doc said that Tyler seems to have MILD autism. Just typing that makes my eyes well up with tears. Now know that all standaridized tests say TY has moderate to Severe Autism, however the doc says Tyler's major issue is Apraxia, i.e. absence of speech which tends to cause most of Tyler's behavioral issues. We also have sensory issues and peer issues to deal with however, healing that speech portion would obviously promote the social part a bit better and we can deal witht the sensory/food issues. Another reason to try to get going on some more one on one speech. Funny thing... I emailed Carrie for speech recommendations as I couldn't find my notes and she recommneded the person Tyler had assigned for speech towards the end of teh school year, she's typically a resource for the school/county but when the speech therapist left during the school year she stepped in. Small world in autism sometiems and good to know that some how we keep finding the best :) Anyhoo... if we had to choose between speech and music we'd choose speech as a priority but hopefully we can find a way to do both :) Can you believe it.... MILD.. the whole rest of teh appt I kept hearing "MILD" in my mind. Ahhhh.. the odds are significantly higher for a child with mild autism to recover vs. a child with moderate to severe autism. As such.. even if he does not recover, being mild is much more socially acceptable and improvements will not stop regardless of his diagnosis and we could hope for an aspergers diagnosis as an adult.. Where he could function independently and have a family aand friends and just be a bit on the quirky side.. shoot people tell me I'm weird all the time! Although I despise the peaks and valley's that you deal with fighting autism.. I love the peaks!

Ok, he also mentioned HBOT therapy.. we've heard of this before and pretty much all I knew is that it was reallye xpensive and someone at work gave me some info for a place in South Lyon. It's not expensive for a one time situation but it's repeated visits that show improvement. THe doc said today about 30% of kids show signifnicant improvements. THis may be coming down the road for us.. here is an explanation of what it is. Also you can find info on the doctors website including teh cost. He has some available for rent at $2500 a month! Sigh. We'd obviously do whatever we could and do our research if this is a way we decided to go to make it all as affordable as possible. Someone at school told me the south lyon one was reasonable. We'll see.. anyway no need to worry about that now but in case you want to know what it is when I talk about it in the future here is the info: Hyperbaric Oxygen Therapy (HBOT) has become one of the most frequently utilized approaches for Biomedical Therapy in Autism. HBOT involves supplying enriched oxygen at elevated pressures. As a result higher concentrations of oxygen get into the body tissues and enhance multiple physiological processes. Although it sounds quite simple, the effects of HBOT can be profound. There are reports of HBOT being helpful for dozens of medical conditions including wound healing, infection, intestinal inflammation, fetal alcohol syndrome, chronic pain, and degenerative brain diseases. Many hundreds of children with autism have undergone a course of hyperbaric therapy at various autism centers, with great anecdotal success. Parents report significant improvements in language, socialization, behavior, and gastrointestinal symptom. HBOT appears to work on many levels: it is anti-inflammatory. It fights abnormal oxygen-sensitive bacteria. It improves metabolic efficiency. It improves blood flow to the brain.
www.hbotreatment.com

Ok we are also going to start ben on enzymes to help with his digestion.. he's typically constipated until we started benefiber which is ok but now he's on the other end of the spectrum. He said kids with bowel movement issues typically ahve trboule with potty training so we are gonna try to get that in order, and of course he had a takl with Ben about being a big boy. Also discussed how peer pressure is a big helper so mabe at daycare they can have a potty train! I mentioend this to daycare today. As for food.. and ben's lack of interest, he said not to make it a control issue. Have healthy food availalb efor ben to eat whenever he decides he is hungry and to not force him to eat meals if he is not hungry. which our kids never seem to be hungry. Both boys are still under 30 lbs.. Ben at 29 lbs and Ty at 27 lbs. Ben was almost 1.5 inches taller than Ty. Ty is so little. But doc said as long as they are both still growing, no concerns there.

Oh and he gave us a website we can go to to track supplements and symptoms, etc. so taht's cool that we have somewhere to do all that.

Ok I think that's about it for now. he didn't seem overly concerned about yeast as his tests from previously indicited they were only slightly elevated. We are retesting urine though this week so we'll see.. the boys were on antibiotics a lot this winter so who knows it may be higher now but hopefully it will be teh same and then we don't have to deal with that antifungal medication.

So anyway it's nice to finally have a pediatrician again. It's great to hear the word "mild" in regards to Tyler. It's great to have someone really work with us on a plan for moving forward and it's great to get the reaffirmation that we have been on the right track all along and we are lucky we caught it early we are lucky that we haev before, during and after stadnardized test results thank so to the study, we are luck that we had carrie and went forward into the path that we did. I mean just this week our support group leader saw the blog and emailed me the name of a music therapist she knows.. if it weren't for us moving to Ann Arbor schools, we never would have gotten that input from her. We've met some wonderful supporting people along the way and they just keep steering us in the right direction.

So next week is the last week of summer preschool at the school and then immediately following the next week Ty goes off to Splash Camp and then after that back to school already and hopefully we'll have some sort of speech and/music plan in place.

7/23/09

Here's a pic of Tyler and Steve.. on Day's Tyler doesn't nap, he struggles to stay awake past 6:30. In this instance, Tyler was really beside himself during bathtime so Steve took him out to snuggle while I finished up bath time with ben. (a huge issue when one naps and one doesn't cause we can barely make it through dinner and bath before Ty starts melting down for bed). So cute and peaceful in this photo.
THe kids needed a new pediatrician as theirs left the practice in the middle of the horrific plague of a winter we had and sinc ethey were sick all winter we were never able to get them in for their 3 year old well visits with a regular pediatrician, we just kept giong to the after hours clinic for sick visits. Got to know that guy pretty well! Anyway, we delayed a bit in getting an appt scheduled because we were considering changing DAN Doctors. We found a well known DAN doctor in Ann Arbor that is also a pediatrician. We've gotten good and bad reviews of him so we are gonna see how it goes. There are major perks to having an all in one doctor and also one that Ben sees so we feel that those benefits outweight any of the negative feedback we've heard which is basically that he's a super busy doctor that doesn't know the kids and you have to go through the history each time. Anwyay, that appt is tomorrow morning so we've been busy gathering all the info we need. So not only will we finally get to see wher teh boys are on the growth chart (ben has not really been eating much for weeks) but also we can get moving again on teh DAN Protocol and maybe this doctor has some creative billing ideas, etc. We'll see.

Forgot to mention that Steve took Tyler horseback riding. http://sunshinefarm.homestead.com/ Tyler liked it and Steve is gonna take him again this weekend whiel Ben and I go grocery shopping. Grandma is gonna go see Tyle rtoo so maybe since there will be another adult there we can get some pictures.

We are starting to gather information on music therapy. I foudn some old information I had obtained and also found out some information about the music therapists that will be at splash camp and also found out there is someone at Tyler's preschool that also does music therapy so we are just kind of gathering costs, ideas, etc. right now. I want to see how Tyler does with it at splash camp. If you want more info on music therapy you can go to this link http://www.mtsa2.com/test.html_004.htm in fact this is the one I had reseached in the past and kind of explains how it works.

072109 Update

My apologies for not updating the blog in a couple of weeks. Not that there haven't been some good things happening, but in general I've just been a bit down about Tyler's progress lately and I guess I've just had difficulty putting that information in writing. So I guess I'll start with the things that have been upsetting me.

Tyler has begun hitting himself, not hard, more like slapping himself on each side of his cheeks when he's frustrated. It's been a long time since he's banged his head and I was hoping we were past the self-injurying behaviors. School also noticed the behavior and is blocking it as are we. BLocking means, stopping him from injurying himself but not giving him any attention for the behavior, .e. no talking, eye contact, etc. Transitions are something we always work on and when a new situation is upsetting we find a new way to transition, i.e. I brought a toy with him today to school that he hasn't played with in a long time to help transition him to go with the teacher to class and say good bye to me. This is really hard for him and he was quite upset last time I dropped him off so knowing that I brought something reallly fun today for him to hold and he did great. Anyway, that's a situation where he might slap himself as an example. School also helps with transitions.

The other thign that has been upsetting me is his final evaluation report from U of M autism and communication center. It's a 4 page summary that basically explains how far from normal Tyler really is.. now of course I'm generalizing and of course he's improved and is doing great, but when you put him on scales, he's quite low and it's just hearbreaking to see it on paper. According to the Mullen Scales of Early Learning Tyler does ok on the non-verbal etsts, at 23 months for visutal reception and fine motor skills so about 14 months behind if I'm doing my math right but for the verbal tests, obviously we all know he wouldn't do well, but I just hate seeing the number. It lists his receptive language at 16 months.. I think Tyler can actually understand much more than we know, he just has no way to express it. w hich brings us to his expressive lanuage rating which was 8 months... our little guys has the receptive lanuage skills of an 8 month old baby and he's almost 3.5 years old. So yeah, that hurts.. I mean no one wants to hear that about their child. There is also a Vineland Adaptive Behavior: Tyler scored low - moderately low in all areas. he also completed another ADOS (autism diagnostic observation schedule), module 1.

So the recommendations from U of M following the study are to receive consistent and intensive intervention with speech and behavior objectives. To continue to motiviate and develop pretent play. To develop a safety plan in case Tyler wanders away and to continue to monitor his progress with the occasional standardize test.

Ok so on to the good news. Tyler is trying to write his name. Enough so that I was able to understand that was what he was trying to do. he wrote the T and Y pretty clearly and then struggled a bit with the other letters. We are really excited abou this progress in terms of his learning his letters, sounds, numbers, etc. He really is so smart and we all believe that's what causes his frustration because he struggles to communicate it all with us. Poor thing. I just wish wish wish I could pull him out of the trap that he's in. He has such a beautiful mind. he's also really getting into his piano and not just pushing keys randomly but listening to how two keys sound togethe rand then playing with his other hand to play other notes with that chord. Oh and at school, we got a report that he was super excited about some girl flute players that came in and played for the kids, that he got up on stage and started dancing!

ok so those two things (good and bad updates) bring me to my next point. We have been discussing next steps and we are pretty certain we need to find a way to get Tyler into speech and music therapy. He gets speech through school but not direct one on one therapy. I also want to try to promote his love of music through music therapy which is recommended for children with autism. THis may be another way we can bring him out of his shell. He's pretty close to giving up his naps and I'm thinking my the time fulll time school resumes he'll be done with it so we are thinking of ways we can fill his afternoons with music and speech and behavior therapy .. We are working on creative ways to try to get insurance to pay some, or finding ways to supplement our income or other possible scenarios. Silly that insurance doesn't pay for these things.. just silly. Anyway, Tyler's 12 waking hours during the week are hopefully gonna be filled with some sort of school or therapy or travel. I'm not sure how we'll work the schedule but somehow we always manage to figure it out so I'm sure we'll come up with something and thanks to everyone who helps us with all that!

So on a quick Ben note, he's been quite the traveler this summer. We really do not want to limit Ben because of Tyler as we are gonna do whatever we can to try to prevent any resentment Ben may have towards Tyler. This past weekend, Ben went with his uncle to Steve's parents cottage with the rest of Steve's siblings, nieces, nephews, and parents. For many reasons we decided it was just best to send Ben and keep Tyler home. So Steve's brother picked him up at our house after he flew in from California and he and his girlfriend were Ben's parents for the weekend. Ben did great so I hear and had no problem at all traveling with someone he's only meant once or twice. His uncle also taught him how to swing by himself:) He's so social.. so opposite of Tyler. Anyway, we decided that it's just better on all of us if we limit our family travel and just try to do separate activiies for a while. Had we went up north we wouldn't have been able to do much of what the other kids were doing cause of Tyler, he cannot sit still, he cannot be in large open places, and he cannot be in enclosed places with a lot of people.. I mean he can do all those thinsg but some major behavior problems or melt downs will occur and we work through them, believe me, and when we do those things we put as much support in place as possible but overall it's just incredibly stressful and disheartening becuase we always feel we are missing out on Ben's fun and when we are around Ben doesn't understand why we can't go do thopse things with him. Anyway, long story short.. Ben is having a great summer and we are so happy for him. Tyler couldn't ask for a better brother. Ben is a natural nurturer and the fact that he is so social will really help Tyler out too when they are in school together one day. I took Ben to see Dawn of The dinosaurs and as we are walking out, two little girls are exiting the bathroom with their mom. They were probably around 7. They had long blonde hair and were about 12 feet in front of us walking the same direction we were.. Ben shouted out "Hi girls!".. it was hilarious. the mom turned around and looked at me and I just said, I'm gonna be in trouble when he gets older!

Home Sweet Home

(started writing this on Tuesday) There is something to be said about the "home sweet home" phrase. Over the weekend, we did a bit of a test family vacation. Steve's grandparents have a trailer in a summer campground of sorts, although it's much more resort like than a campground. His great grandmother also has a trailer up there that is currently for sale and vacant. We were offerred the opportunity to stay there. We thought this would be a great opportunity to see how things would go on a vacation. We'd be away from the conveniences of home but yet have family support nearby if we needed anything adn we also had a nice quiet place all to ourselves if Tyler needed a break. It's difficult to have Tyler outside in an open area and this is one of our biggest concerns when contemplating weekend trips and possible future vacations. So steve's grandma and mom were great, they kind of helped get the place set up for our visit and brought up linens, dishes, even stocked the fridge with pop for us ;) We had our own golf cart to use and access to beaches, playgrounds, pools and water parks. Tyler loves water and Ben loves people so we thought/had hoped this would be one of those life altering moments like when we all watched a movie together one time, that we got a sense of what it's like to be a normal family. Unfortunately the weather didn't really cooperate.

So to start off on the drive, we knew we'd have to break up the trip, the longest the boys have ever been in the car is 3 hours and it wasn't fun, and we've only done it that once so we decided to stop halfway. We packed lunches since Tyler can't eat at any restaurants and had originally hoped to go to a water park in Lansing but it was way to chilly so we had to find a new park. Luckily we found a great one, however, it was almost too great! They had a water/bead feature that's hard to explain but Tyler was very obssesive with it which made it hard for us to get him to eat and thefore to eventually leave. It also left us somewhat stranded in trying to pack the car back up and Ben wanted to play on the structure and Tyler wouldn't budge from this bead/water thing. So I made the decisiont to let Ben play on the structure alone which also meant I couldnt' see him most of the time and was having significant anxiety about it all (steve was loading the car) but in the grand scheme again, it's safer to leave ben alone than Tyler so I took a risk and luckily everyone came out ok. Steve was rushing so it wasn't too long and everytime I saw ben I was watching his direction and watching anyone that could possible enter the area with him. ok back in the car... yeah on our way to family vacation.

our arrival was good, Steve's mom and grandma came down to help play with kids while we got settled.. we had to unpack Tyler's dishes and food and set up a system of sorts for washing Tyler's dishes. He can't use the same water, sponges/washclothes, or anything else that is being used to wash everyone else's food due to cross contamination and obviously there was no dishwasher which makes that all pretty easy to deal with at home. The weather wasn't so great for any type of water activties so we kind of just rode around a bit on the golf cart, played inside and went to grandmas for dinner. The boys hadn't napped so they both crashed pretty early.

We had a plan for Saturday to spend most of the time between the water park and the beach but it was just too cold to do those activities so we got up and around and took the boys to one of the playgrounds, unfortunately itw as also near the water park and even though it wasn't open, Tyler could see the water and was really wanting to go play in it. We were able to distract him a bit and decided to go on a golf cart ride. The park was packed and there were hudnreds of golf cards so intersections requried some waiting, the longer we went on our ride the more squirmy Tyler was getting at the intersections. We had brought toys to help deal with the waiting but eevntually he was bored with them. We decided to go back to the trailer and have lunch. After lunch it was still too cool for playing in the water but we wanted to find a way to get the boys tired so they'd nap and be able to stay awake for fire wworks. There was a playground near the indoor pool on the sandy beach that we attemped to visit but Tyler was just unable to play on the playground with water so close by, we kept trying to distract him and play fun games but it wasn't working so Steve left with Tyler and Ben & I hung out for a little on the playgrund. Ok, back to trailer for naps. It was a one bedroom so Ben slept ont he pullout sofa..we had Tyler in a pack n play. Well Tyler didn't feel much like napping and kept jumping out of the pack n play which we were worriedw ould wake up ben and obviously we can't just let Tyler roam free. We knew he'd never make it to fireworks without napping so Steve decided to take Tyler for a drive (we had to race out the door to beat the parade) and I stayed back with Ben. After 45 mins Tyler still wasn't asleep so he brought Tyler back and took him to the water park (finally warm enough, yeaH) and I stayed with Ben. By the time Ben woke up and we got ready for the park it was about 4:15. We played at the park until 5 when it closed and then went back to the trailer to make Tyler's dinner. We wer eeating dinner at Steve's grandparents house but had to take Tyler's food over there. So we prepared dinner and brough ttoys over to grandmas so tyler would be happy. Everyone ate and as soon as we were done, Tyler was super tired. ben went outside to play ball with grandma and dad and i snuggled with Tyler. We decided to leave to put TYler to bed as they had visitors that stopped by and Tyler went to the bedroom to avoid the people anyway. Ben stayed with grandma and played ball. A bit later, Grandma stopped by and askd if she could keep ben for a while to play and then take him to fire works. We agreed he'd have a great time and then thought it probably would be best for him to just stay at the other trailer with her since Tyler would be up early and Ben is staying up late so we wouldnt' have anywhere to let Tyler play while Ben was sleeping in the morning. So steve and I stayed at the trailer and didnt' feel comfortable leaving very far from Tyler. Since we knew he could climb out of the pack n play and since he doesn't talk, we may not always know what's going on unless we can physically see him. We went to bed before the fireworks.

NExt morning we are packing up to leaev and grandma comes by with Ben and Ben had a great time at the fireworks, he loved them and was in awe of everything. They were going on a nother golf card ride to go see the trail, talkign deer, etc. the misc. things people had in their little lawns for decorations. He was having a ball. i on the other hand felt like I missed out on another moment in Ben's life. I had spent most of Saturday inside with one sleeping child or another and just had an overall feeling of saddness. It's one thing to be home, where we have all the conveniences and supports in place and you know you are working towards a goal, but when you are out on a holiday weekend and you see how much fun other families are having (TOGETHER!!!) well it just makes you sad. You have an idea in your mind of having a family and what it will be like and ours isn't that way and I accept that wholeheartedly and do what we can to help the situation, and we know we aren't like other families, but still sometimes it's hard to actually see it. So I chalk it up to a learning experience, one that the weather certainly didn't help. We need to work on Tyler's ability to be close to water but not have to necsesarily be in it. We had family support and without it, Ben wouldnt' have had much of a good time either so we know that if we do anything again in the near future we need to have family around. We know that our success on outdoor trips depends heavily on the weather and access to water or else we can't keep Tyler's interest. And all and all it wasn't a bad weekend by any means, we just all did separate activities and there wasn't the sense of togetherness that I had hoped to feel.

On a side note, please keep in mind that this is Tyler's journey, our life in a nutshell trying to help him,t rying to be a family, trying to live a normal life so i write from the aspect of how autism effects our lives. I hope that you all understand that this is also sort of a documentation of our lives, as I'm hoping to look back one day at the way things used to be and realize how far we've come. So I'm not saying that other people don't have it worse, I know they do. But this journal is about Tyler, not about those people that have it worse than us, and I want to capture all aspects of how autism can affect you in ways that many could never understand. Who would think that sitting on a golf cart waiting to turn would be hard, who would think that your kid would not want to eat cause he'd rather stare at the beads in the park, who would think that your kid would love the feeling of sand on his feet, who would think that you have to strategically place dirty dishes as to not mix one with the other, those are ultimately the things that we deal with every minute. So when you take us out of our safe guards, it's just hard and that's what I want this journal to capture.


So after coming off a weekend where I just felt like I was missing out on family time, I put a lot a lot of thought into planning the evening after work. A little advance planning goes a long way in our life and I needed to feel that we could all do fun things together. I raced home after work before I picked up the boys from daycare so I could change my clothes and get the boys bikes ready for a a bike ride. you may wonder what "get the bikes ready" means. I have to get them off the hook, put a toy in the back of the bike for Tyler and get drinks ready for the boys. Tyler struggles with "waiting' for just about anything and when we are outside I get nervous if I'm doing something and he's "waiting' because he can easily take off and I may not notice. The reason I wanted to do this in advance is that he struggles with the transition from the car, to the house, and then immediately back outside again. So it's just easier if I can get him out of the car and put him directly on the bike. he sometimes even gets upset about getting on the bike initially even if we don't go inside. So anyway, I then got the boys from daycare and on the way home we talked about the plan for the evening (Tyler just listend). It was bike ride, make dinner, eat dinner, play on swings/slides/sandbox, bath, story, and bed. When we got out of the car (we always get Ben out first cause we know he'll stick around while we get Tyler out) and then get on the bikes. As initially thought, Tyler was a bit resistant to get on his bike so I gave him his toy, next time i"ll make sure to give him his toy before I ask him to get on the bike. I do take the toy away before we get to teh first intersectin and he's usually ok with that. Anyway the bike ride went great. Ben was singing songs with me and he chose songs that Tyler likes too (helps Tyler pedal). We got back and made dinner and everyone was great, everyone ate a good dinner with very few supports in place. We went outside and swang and then played in teh sand box. Tyler doesn't like the sand box but i was able to play with him with things he did like whiel I played with ben inthe sandbox. Bath time wwas seemless we sang together and did bubbles and then a book and bed. It was perfect. I couldn't have asked for a better evening, all transitions except car to bike were seemless, I gave lots of warnings and everyone worked very well together and took turns with mom. THANK YOU!!! Someone must have heard my prayers that I just occasionally need to feel like we can be a family all at the same time and not have to split up to get through life. It felt so good.

So I nkow this is the longest post.. I figure why not keep writing. Ben said something to sweet to me the other day. we were on oru way to daycare in the morning and he said, "Mom, I wish Ty-Ty woudl talk to me"... I said oh honey, mommy does too! I reassured him that he could talk to Tyler whenever he wanted and that Tyler can hear him (should have used this as an opportunity to promote sign language and how he can talk to him that way oopsss..Ben seems to be more interested in sign language lately.

Sorry for all the spelling errors..