5/5/08 Update

If anyone is interested in learning more about the biomedical treatment of autism, there is a teleconference next Wednesday at 8:30 p.m. Eastern time. I plan on calling in since the boys will be in bed by now. Attached is the website you can register online and they send you the course materials. http://www.innovativehealing.com/teleconferences It's free, they just give you a phone number and password to join the call. We are just in the beginning stages still with the biomedical treatment and I know we aren't always able to answer all of your questions, so if you'd like to learn more from an expert, this would be a great opportunity. We have received our first set of enzymes in the mail for Tyler which we are to give him at meal time so we hope to start that program tommorrow. We have to wait until Sunday p.m. to re-do the urine test becuase they can only pick it up Mon - Wed. That will let us know what else we need to put Tyler on/or remove from his diet. If any of you noticed, there is a comment in my last blog update from someone in the UK who says that their son has been on biomedical treatment for 2 years and cannot be distinguished from his peers in the public school due to the success of the treatments. Read his brief comment, it'ts very uplifting and could not have come at a better time.

Both boys received successful haircuts from mom last night, without any problems. Dad bought some new (quiet) clippers and they let me clip away. They are so cute. I didn't get a chacne to get a picture of the two of them however, it was a busy morning.

Both boys went to floor time and Ben did great on sharing time and sharing mom. Tyler was easily frustrated today but in a good mood. Hard to explain. They are both getting really good walking and holding mommy's hand. We got back home around 10:00 and it was time for Carrie's visit. We were videotaped today as well. We worked on snack time and did a lot of hand over hand signing for Tyler and a lot of song singing for Ben. I tried to do songs that Ben would like that woudl allow me to make gestures for Tyler's benefit.. tricky.. because Ben doesn't like some of those songs like itsy bitsy spider and asks me to stop singing. We then moved on to bathtime and that routine is also coming along well. Both boys are helping to take off their clothes, Ben is a little more independent in this area than Tyler. And both boys carry their bucket o' towels into the bathroom which helps give them another independent task during bathtime. We wash hair and body and then move on to song routines/free play, then bubbles while water is draining and then exit from tub. All of these steps help Tyler transition out of the tub which is hard for him since he loves the water so much.

Today, however, we had to do an emergency exit from the tub since Tyler decided to go poo, which lead to a melt down on Tyler's part. He did however recover quickly and never once partcipated in any self stimmulating behaviors such as head banging or teeth gritting, etc. He just cried. So it's good because although he was frustrated, he acted appropriately on that frustration. From that point on we tried a few other activities, ball, parade, but really didn't get to spend much time on those things.

Tomorrow, the new speech therapist is going to daycare (after our morning U of M clinic session) so Tyler can spend a little more time with her before we start therapy and to get used to the daycare surroundings as that is where we intend to have sessions at least in the short term. Her name is Lisa and I'm really excited to get moving on speech again.

Tyler has one of his monthly evaluations next Monday at the University of Michigan and then another school district evaluation on the 21st. Lots of evaluations going on.


Here are Tyler's current objectives/goals:

• Child follows the reference of another person's point at a distance (3-5ft) by turning the head and directing gaze or getting tan object wher the persoin is pointing at least 2 times.
• Child follows a simple instruction with at least two different gestural cues other than a point (i.e. "come here" wth open arms or "give me" with palm out.
• Child uses at least three different distal gestures that are conventional (wave, clap, distal reach distal point, head shake) in that they have shared meaning that is widely recognized.
• Child follows a simple instruction in a fmailiar routine with a tleast two different situational cues (i.e. partner says "wash hands" when standing in front of hte sink and child holsds out hands under faucet).
• Child uses at least two different vocalizations that must included a vowel sound and may also include a consonant sound that procedes or follows the vowel.

Tyler mastered so many skills the last time, it' s too much to type so I'll just give an update on the number, to date, 16 mastered skills and I've mastered 19 so between us we've mastered 35 skills! All of my goals are of course to support his so really they are all Tyler's goals :)

050708 Update

Tyler and I both mastered more goals last week so we have some new goals established. I do not have them with me but I'll hopefully share them with you tomorrow. We received some good feedback as to our successes but also were told in a nice way that we both need to work harder. Florida State reviewed our parent fidelity tapes (Tyler and I are taped weekly) and also the clinician fidelity tapes (Carrie is also taped weekly) and they want us to push Tyler harder. We need to do less and make Tyler do more, i.e. when we play parade, Tyler, although engaged, has chosen recently to not actually go around the circle. We've begun to kind of gently force him to go around at least 1/2 turn at a time. We also need to continue to up the ante and find ways to keep Tyler just a little frustrated but while maintaining regulation. I'll be honest, this feedback added to the mommy guilt I already feel. Although Carrie and the study have been a true blessing for the family, I look forward to the fall when we hopefully have more people involved in Tyler's therapy. I'm being pulled in so many different directions during the week that I"m finding it nearly impossible to ever "up the ante" and push Tyler harder. We do work on our routines and you can really implement strategies that we've learned in all of Tyler's day, however, pushing him with everything else going on is hard. For example.... when taking the boy s for a walk in the stroller, I'll stop, to try to get a requeste for Tyler to gesture "go" or make some sort of vocal sound to indicate go. This requires a long pause on my part.. When I do this with Ben in the stroller, Ben immediately, says "go", stuck, etc. adn then doesn't understand why I'm not going. Then I explain we are waiting for Tyler to say go. I explained my concerns to Carrie and how I feel I'm not doing enough for Tyler and she said this is common complaint with parents of a child with autism, especially when there is more than one child involved and both parents work, etc. There are times I see Tyler doing or working in a way that I should stop him or redirect him and I can' t because Ben is needing my attention at that time or I'm cooking dinner, laundry, etc. It's a struggle because most parents are free to do chores, etc. when their kids are playing happily, but even if Tyler is happy doing something, it may not be an appropriate way to play and as much as possible I should be helping him.



We still have plans in the works for bringing on a behavioral analyst in the fall. I'm waiting to receive her paperwork in the mail and am waiting to hear back from HR on the benefit side of things. I have a few possible tricks up my sleeve in terms of way to get funding and to find a way to afford all of it. This is the reason the rally was so important. I can't imagine how much money a family would need to make to afford $2500 a week for just one type of therapy but it's ridiculous that we even have to consider paying it out of pocket. We are hoping beyond hope that the bills will get passed (first they ahve to be brought to a vote, which has not happend) and we can get at least this portion of his therapy covered. The biomedical stuff is not covered and can also be hundreds of dollars a month. For example, the urine test we did on Tyler last night is $130.00. THe first one came back inconclusive and we are still waiting for a refund on that one. HIs b12 is $100 a month and we've just purchased what is the beginning of the other vitamins for him which is where the costs can add up. Oh, and we spend $200.00 a month in just rice milk and formula to make sure the skinny minnies are getting as much nutrients as possible. Yes, the formula is casein free. We are lucky in that the OT and Speech are both offerred through the school district so we dno't have to pay for any of that :)

Please don't feel sorry for us, I'm writing this so you can see how important those health bills are and if you can find a way to make sure your representatives can push these bills through it would be greatly appreciated!!!! If you knew the success stories we know or saw for your own eyes some of hte kids who have recovered, you'd be astonished. http://www.dailytribune.com/stories/010708/loc_autism.shtml This article is about Justin Harlan who is the son of STephanie Harlan who is the director at the Judson Center. They both spoke at the rally. Justin has also spoke on the floor at the capital. He's only 11! He is amazing, a true success story. Not all kids have this much success, in fact, few do. We are not ignorant, we know the chances for a full recovery (i.e. no longer fit autism diagnosis) are slim, but when there is a chance, no matter how small, how can we deny Tyler that chance. I can't and I won't. So again, I'll apologize for our lack of involvement in the next few years with family and friends. We may not have extra money for presents at Christmas, or remember to buy birthday cards or be able to attend family functions. Our neighbors are probably tired of looking at our overgrown/weed ridden lawn, but all of that just seems so insignificant in the big picture. So please do what you can to support those bills. It's the biggest thing you can do to help our family.

Happy Cinco de Mayo

Happy Cinco De Mayo. Here is a video clip we took a couple of weeks ago when we took the boys to the inflatable place. We must have taken this one early into the session because Tyler can very easily climb the ladder and go down the slide on his own, although he goes on my lap in this video. The boys had such a good time last time, they went again this weekend. And were going up and down the the ladder and slide all by themselves! Such big boys now. Grandma had a ball too :)

There isn't much new news to report for Tyler. The month of April was rough for us with the flu, colds, and then Steve and I being out of town part of it, it just seemed difficult for us to get ahead. We are looking forward to May and really moving forward on Tyler's progress. Starting in June we only see Carrie twice a week so I want to take advantage of all of the time with her that we have! Since the weather is turning, we have begun to work on things we can do with Tyler outside. It is very difficult to get and then keep Tyler engaged outdoors, one reason is because you can't necessarily control the environment, i.e. toys, etc. And two, there are so many sights, sounds, smells, etc. it's very overwhelming from a sensory standpoint. So we'll be working on those things as the weather permits. Ben will also be joining Tyler and i this week in floor time on Thursday and our session with Carrie. We'll work on snack, bath, and hopefully either "chase" or stroller ride.

I briefly met wth the speech therapist last week and am really looking forward to working with her. She seems wonderful and really interested in ways they can help support Tyler's goals from the study. Also, small world, I used to work with her sister in law at my last job. We are just waiting on a time for all of us to get together (speech, OT, U of M, me, Tyler) to discuss ways to work together and then we'll schedule weekly sessions.

P.S. Ben used the big boy potty on Friday! He went poo poo and when he was done he looked at it and said "ewwww gross" and then later in the day, he went pee-pee. He's getting to be such a big boy. His new favorite song is "hey diddle, diddle" which he can recite the entire way through. He's really funny.

05/01/08 Finally we have video

So this is only a short clip but at least we were finally able to get one out there so you guys can see how we work with Tyler. This was actually a video of what is called a "play sample" which is done monthly has part of Tyler's monthly evaulations to take data on his progress. Steve actually takes him to the other assessments, but the play sample has to be done by the main caretaker, i.e. the person involved in the study so Tyler and I do this portion of the evaluation in the clinic. This is also the same room that Tyler and I visit every Friday morning. The toys you see on the table and the ones Tyler is working with are only used for the evaluation purposes and taken away after testing, but there are plenty of other fun things to do in the clinic.

This clip is only 2 minutes long but there is a lot that can be learned from it. Prior to the study, not only did Tyler have a hard time playing with cars appropriately (he would flip them and spin the wheels) but he certainly did not care or necessarily want anyone to play with him. As you will see in this clip, he's very intersted in having mom play cars with him. The beginning of the routine we start off with very simple requests and gradually work up to (not sure if the video went this far or not) waiting for sounds and eye contact. There are many other mastered skills shown in the video that you may not pick up on, For example, me pointing to somthing and saying "tyler look", he never used to look when I pointed. Or me helping Tyler with his receptive language by saying "bring me car" which he was going to do anyway so he just helps him learn the phrase. Same as "go get car". Prior to the study, Tyler basically made little to no sounds, certainly didn't make sounds as a request for anything. As you'll notice in the video, he's making sounds to get me to push the car. I do give him a few free "pushes" to make sure he stays regulated and engaged in the activity and doesn't get overly frustrated.

I'm so glad you all get to finally see these videos. Don't forget that communication develops in many many steps and most kids just do it so quickly you don't notice all the steps. We have to teach Tyler each step so try to remember back to Tyler last summer. He was happy doing his own thing, didn't want you to participate in really anything and didn't care if you came or went and now look at him. He's so amazing!

4/29/08

Well now we know why Tyler was a little off this weekend, he came down with a runny nose yesterday. He also seemed very sensory oriented today which happens when he's under the weather. Easily over stimulated and really into sensory things such as looking/trying to touch my eye, yes I know that sound weird but that is one of his self stimulating behaviors. Overall today's session went well, we had trouble up'ing the ante since Tyler was under the weather and easily overregulated. However, we also had a videotape session today and I think he did pretty well. It was a generalized video, meaning Tyler and I had to work on things that are not part of our study routines. One of the things I worked with was the vaccum. Tyler loves the vaccum, so I used it to help get him to communicate with him> I would vaccum for a minute and then turn it off and say "on" and try to get him to make sounds, eye contact, gestures, etc. It worked, he is very motivated by teh vaccume and by the end of the routine (which lasted maybe 10 mins total) he was making the "ahh" sound which is pretty close to "on" to me! It was hard to hold out because sometimes it's a good 30 seconds which is an eternity when you so badly want to help your son... but it worked becuase he would finally say it and give me eye contact. Yeah Tyler! Hand washing also looked great. He climbs the step, turns on the light, and turns on the water all independently :) Great job Tyler.

Tomorrow we go to floor time at the school district and we get to meet the new speech therapist, Lisa Meszaros, I'll also get to meet Jody Howard who oversees the therapists and who I've been working with to make some changes. I'm really excited to move forward with all this. After the initial meeting, our next step is to get the OT, ST and Carrie all together with Tyler so we can talk strategies moving forward.

I also was able to get a billing code from the potential ABA therapist so I sent this off to HR and am anxiously waiting a response. Carrie gave me info on two potential organizations that offer grants so I'm going to look into those and see if we can get some sort of grant to help fund some of Tyler's therapy. Carrie also mentioned a conference coming up in the fall which although is expensive, she said this would be one of the best conferences for me to go to for all in one shopping in regards to ABA so she's going ot get me some information on that.

4/28/08

I apologize for the delay in updating the website. So much has been happening that I was hoping to have everything resolved to give one big update.

Session Update: Sessions are going well. Tyler never eats well at the clinic on Fridays. We spent hte last 15 minutes of the session getting tyler to take "just one bite" and eventually he did. We didn't force the issue but we also wouldn't play with him or do any of his requests until he took a bite. We didn't say no when he asked us to play we just said "one bite".. we prevailed, yeah! Following through with demands, as long as they are reasonable and supports are provided, will really help Tyler behaviorialy in the long wrong. There was also an autism awareness training at the fire departmetn Friday morning. It was the first time I sat in on training and it went very well. I had avoided the others for fear that someone may say or do something that would upset me, but everyone was on their best behavior. All shifts have now been training in autism awareness.

Carrie also came to our house Friday night for a make up session and to see the difference between when she sees just me and Tyler during snack time at my house vs. when the whole family is sitting down to eat dinner. The daycare provider and her daughter also attended. If I could sum it all up in one word it would be "chaos". Ben was acting up since there were new people in the room. He didn't want to eat or listen to mom. Tyler hadn't ate well all day and took about 10 mintues to chew just one piece of meat and then the boys were competing for attention from the daycare provider and at times me. So all and all it was nuts, but on the other hand, very good for Carrie to see how different it is when it's not just me and Tyler and when I'm trying to eat too. The meeting also gave us an opportunity, i.e. Carrie, Dad, Mom, Daycare provider, to all collaborate on Tyler's progress and rules, etc. We are all rarely together, in fact, this may be the first time we all were together to talk so that was fantastic.

School District Updates: We are switching speech pathologists. I've had some growing concerns over the services Tyler is receicing from the school district. After much discussion with one of the leaders at the school district, a decision was made to change speech pathologists. I'm supposed to get confirmation of the change today. Hopefullly then I can set up a meeting with the new person and move forward with Tyler meeting them and discuss our goals, etc. and get moving. The plan is to have speech and occupational therapy to continue at daycare. The past pathologist was wonderful and really pushed Tyler to eat when he was 13 months old and refusing most every food. We just feel that at this point it would be best for TYler to see a different pathologist; someone that fits the personality that he seems to learn the best from. HE's done so well with the study. The school district leader is also very supportive of them following the lead of U of M since TYler's made such progress. The Occupational Therapist will remain the same and is supportive of slowing things down a bit to give Tyler the best opportunity to learn. If you want more details about any of this, just let me know. It's too much to type.

Biomedical Updates: We are still doing the B12 shots and the GFCF diet. Tyler was a little out of sorts on Saturday and we suspect he may have somehow had some gluten in his system. Wouldn't be hard if ben dropped a cracker or something but we'll never know for sure, he's much better now. We had to re-order a urine tester kit because the last one was inconclusive due it being too diluted. THat test alone is $130.00 and not covered by insurance. None of his biomedical care is covered by insurance and even if the autism insurance bills pass, it still will not because that type of therapy is not included in the bills. Baby steps though.. the other type of therapy that would be covered would be amazing. Which brings me to my next update.

ABA Therapy: As I stated before, we lose Carrie sometime in July (boo hoo, tears falling) and want to pick up where we left off with therapy. We are currently researching ABA therapists in the area and are obtaining information. Once we have more information, I'll let you know. We are hoping we can somehow find a way to have insurance cover this but the chances are slim. I'm looking into what type of procedure code the therapists use for billing, etc. and working with our HR department to see what can be done. We want Tyler to have about 25 hours a week of this type of therapy which woul dbe around $2500 a week or $10,000/month, obviously we do not have that. If all else fails, we'll try to have someone train us a few hours a month to work with Tyler and then we'll provide as much as we can for him and possibly hire students to assist. Our philosophy is "never give up" so we'll do whatever necessary to get him what he needs with the least amount of impact/stress to our family but we won't give up regardless of the cost. If you went to the rally, you'd know why. There are vigilant parents up there who have children who recovered who were literally shouting, "Don't give up Parents" "fight with all the fight that you have" and that's what we plan to do. We saw for our own eyes receovered children, it gives so much hope. Even though it's few and far between the children that actually recover to the point of no longer having an autism diagnosis, we are hoping Tyler can be one of those kids. We'll love him the same no matter what but we also don't ever want to look back and question whether or not we did enough.

Walk: I have no idea what autism speaks didn't announce the date/location of the walk as they had intended to do on Friday. THe date they gave me at the rally was October 12th. As sooon as they confirm that date/location I'll send out hte info. Please join us to support autism speaks, they've been so helpful to our family.

Family Fun: we took the boys to kelly inflatables this weekend and they had so much fun! As soon as we download the picturse, I'll make sure to post one. I was so proud of the boys. They climbed one of hte ladders adn went down this huge slide all by themselves. It takes a lot of gross motor coorination to do all that, especially since hte ladder was bouncy and there were other kids there.

4/23/08

So here we are, at the capitol, rallying for our little Tyler to have insurance coverage for the treatments he needs. THe rally was great, wonderful speakers. They estimate about 750 people came and went throughout the 3 hour period. Even if you could not attend, please contact your representatives and senators and beg them to support this bill and bring it to a vote It will change the lives of so many families including ours.

On another note, the department conducted autism awareness training today for one of the shifts. (3 shifts equals 3 training days). As a reminder, this training includes ways for emergency responders how to recognize and handle someone with autism in an emergency situation. Anyway, a lieutenant just came up to me and told me that the medical call they had just went on which was for a child who had a head injury and was having trouble breating, was for a child who had autism. They told the school staff that they had just went through training that morning for exact situations like that one. This was fantastic feedback, not only for the public to realize that the department is getting trained, but also for the department to realize that the training was worthwhile and useful.

We are a bit behind on sessions since I was at the rally yesterday. Also, I received some general feedback of ways to help TYler from a session that Carrie went to at daycare. I sent it out to those who work closely with Tyler but if anyone else would like a copy, just let me know.

Exciting news... they have chosen a date and site for the Autism Speaks walk. The announcement will be going out on Friday, so be looking for emails from me regarding dates/locatations/etc. Please help or join us on teh walk. Autism Speaks co-sponsored Tyler's study and it's helped us so much, they are also one of the leading advocates behind pushing the insurance bills to the capitol.