He Smiles, He Speaks

Believe it or not, we are starting to think that when Tyler says "ma-ma" that he actually means me, ma-ma! He's done it enough this week at the appropriate time that many professionals and family members involved in his life believe that he's meaning what he says. This is literally music to our ears and hearts! We continue to model words at appropriate times, i.e. when going up the stairs the other day I was saying "up, up, up, up" and he started saying the "uh" sound which we haven't heard hims ay before (and we got that one on video!) .

The diet is going ok. Both boys are getting their 2 year molars so no one is really too intersted in eating. We are hoping by the end of this week that we'll have enough food options (choices) that Tyler likes to be completley gluten/casein free. It will take 3 - 6 months to really determine whether or not it will work for him but we have high hopes. The gfcf website is somehwat difficult to navigate. I've attached the link that actually has the table of contents with the acceptable and non acceptable foods broken down by category in case you are interested in specific items. http://gfcfdiet.com/NewpageDirectory6.htm

Our biggest fear for Tyler is his safety, especially when he is in the care or supervision of someone other than us. Kids with autism tend to have a high tolerance for pain, have limited fears, and they also tend to wander and can be gone in a split second. This link is a tragic story about a kid with autism who wandered away from his care facility. http://www.enews20.com/news_Autistic_Child_Found_Dead_After_Missing_from_Care_Center_05502.html

We plan to give our neighbors cards this spring that explain autism and that has a picture of Tyler in case they ever see him outside w/o one of us. It won't be long and he'll be able to open doors on his own and we want to make sure everyone around us knows that not only will Tyler very quickly jump into a pool or pond w/o hesitation but he also will not always respond to his name or any other request for that matter so we want to do what we can to keep him safe.

My biggest objective now (according to Carrie today) is to really work on Tyler's eye contact. He's doing really well with the hand pulling and now we want to see more consistent eye contact with the hand pulling. Everyone can help Tyler with this. When he reaches for your hand (typically he's not looking) pull your hands back so he has to look to see where they are, if he stil doesn't look, make a funny noise or move your hands up to your face so he has to look in that direction. Once we get more consistent eye contact, we'll start removing the prompts we used to get him to do it in the first place. He's doing so well at communicating through the hand gesture.

Sorry it's taking so lon gto get the video's up, we have just been so busy that I haven' thad time to give Steve'd the DVD's and go through them with him to show him which clips to upload. Hopefully we'll get to that soon. We are expecting a large snow storm tonight so not sure whether we'll go to the clinic at U of M tomorrow or not, If not, I won't be doing another update until next week.

1/29/08 Update

Family Update: The boys were recovering from a cold this weekend and thank goodness, it was a weekend that Grandma was coming to stay! Steve and I were able to go on a date Saturday night thanks to Grandma! Sunday, we were able to take the boys boys sledding though and it was then that we discovered Ben can now count to 10 all on his own without making any mistakes, go Ben! He also knows most of his shapes, including an oval and is getting pretty good about his colors. He's really enjoying his art class which is on Saturdays, they made a wand the first day. Steve takes Ben so they get some one on one time and I can work with Tyler unteruppted for a few hours on Saturday.

1/29/08 Session: I will not get the session notes until Thursday but today's session was great. As soon as the interventionist (Carrie) came in, Tyler was very much engaged. He took both of our hands and wanted to play ring around the rosie, then he took both of our hands (must add he pulled both our hands at the same time) and pulled us over to the wheely bugs and gestured at which one he wnated me to ride on and which one he wanted Carrie to ride on. He then proceeded to push and pull us as he wanted and as we asked. He made lots of eye contact and was doing great. He also took us to the bathroom when he wanted to wash his hands and made the "waa waa" sound which we've never heard before so that was fantastic. After the interventinoist left, a student followed us around doing the weekly taping at our home. This was a bit different though as we were needing to work on routines other than what we work on with Carrie so we moved play time ot upstairs. He did ok, but since it was a new environment and the arrangment isn't necessarily indicative to communication I did struggle a bit to keep him engaged. We'll see how our report card comes out this week as it is based on the video. Carrie has been so helpful to our family, we are sad that we'll be losing her in July when Tyler begins the next portion of the study. She helps a lot with Ben too since she has a behavioral background!

Diet Update: Yesterday, Tyler was completely gluten and casein free, yeah Tyler. He also had the social group (floor time) instructor come over for a home visit and the speech therapist also visited. My mom was there for both of these and she also made Tyler some homemade chicken nuggets that are gluten and casein free with Tyler's new pots and pans and cutting board. We aren't saying we are fully on the diet yet as we aren' t sure we have enough items that he'll eat at this point but we are hoping by the end of this week that each meal and snack will be completely gluten adn casein free and then we'll work towards replacing the necessary household products.

Other Update: Tyler has an appt. tomorrow at the intermediate school district to be reevaluated for services since he now has an autism diagnosis. This may open up some new therapies or funding for Tyler.

1/25/08 Updates

The family was sick this week so Thursday's session was cancelled and we had an extra long session with Tyler today. We finally found a gluten free cereal that Tyler likes. Ben and I like many of them but until we found the GF corn flakes, Tyler wouldn't touch any of it. We are hoping he also likes the gluten free waffles we purchased. If so, then we have 3 quick breakfast items that he'll eat and we can move on to find 3 - 5 lunch items and then we'll move on to find 3 - 5 dinner items. Once we have all those in place we'll be fully functional on the diet and be able to start to experiment with other foods he may like while having the quick food on hand just in case. The last stage will be to transition out all the non-food products we have in our house that contain gluten. Sorry about the spelling errors, I'm typing fast and cutting and pasting.

Here are the highlights from the consultants session notes.

1/18/08: Child has mastered 6 objectives.
Caregiver has mastered 9 objectives

- Parachute: Introduced parachute as an activity and tyler really enjoyed it. He made clear requests and hand pulls and also pulled the blanket over his head to indicate he wanted to continue to play. The caregiver did a good job of creating opportunities for those requests and initiations.

- Ball drop: Tyler was very engaged in ball drop and utilized eye gaze to request a ball and followed the direction "put in" without any supports. Caregiver modeled key words and did a good job of balancing turn taking. Also did a good job of creating oportunites for eye contact by creating a flow to the activity and then sabotaging (showing choices and then pulling back).

Push Toy: The spinning push toy was introduced again. IN the past, Tyler has been difficult to engage with another person in this activity. However, the caregiver did a wonderful job of creating motivation to engage him with another person with this toy. As a result, Tyler engaged for multiple exchanges. Caregiver did an excellent job of eliciting eye contact.

Car Race Game: Although he was difficult to engage, Tyler continues to demonstrate appropriate play with the cards. Caregiver did a nice job of modeling appropriate play and vocalizations through the routine.

General Feedback: Continue to focus on beginnings and endings with TYler (one more time, etc.) Increase complexity of task with eye gaze AND handpull. Modify environmental arranagement to continually create opportunites where Tyler has to ask for items.

1/22/07 Video Review Feedback

Continue with creative transitions such as Night, night to the toys or that Tyler has to puy taway or bouncing Tyler from one activity to another if he is having trouble with the transition.

Upping the Ante: In order to up the ante, caregivers should begin to concentrate on more pauses to allow for more requests, eye contact, etc. The caregiver should incorporate more directive language such as "do this" " say..." when modeling appropriate play vocalizations.

Begginings/Ending: Continuye to think about the beginnings and endings to routines. Recommend that we figure out ways Tyler can assist with snack time. Have a cup in the fridge filled with miok that Tyler can bring to the tabple. Have him choose his own snack, possibly carry items (with lids) to the table.

Environmental Arranagement: It may be necessary to continue to put toys out of each or turn off in order to create requests. Example: Puzzles, We talked about putting puzzle pieces in a bin with a lid and base nearby on the shelf. THis may draw Tyler to the shelving area and create new interest based in getting into the bins.

Non-functional behavior: While the numer one priorty should be to always make sure that Tyler is safe, it is important that caregivers try to make sure that they are not reinforcing non functional behavior while it's occuring. Headbanging example: When tyler begins to head bang, the caregiver should avoid providing Tyler with attention while he is demonstrating the behavior (no eye gaze or vocalizations). Providing attention could inadvertently reinforce the behavior. Once tyler has discontinued the behavior, caregiver might begin to provide calming attention such as huge or head squeeze.

Working with an antecedent: When dealing with non functional behavior, the best strategy is to always try to prevent the behavior from happenings by implementing strategies prior to the behavior.
Diaper change: prior to diaper change, the cargivers should continue to provide Tyler with a preferred toy wityh assists in keeping him regulated.
Eating meals: on days when it is clear that Tyler is not going ot remain regulated during meals or snacks, I would recomend putting a video on before he even has to sit at the table.

Special note: It is imperative that these strategies not be implemented when Tyler is already demonstrating non-functional behavior such as head banging, as it may reinforce the behavior leading it to occur more frequently in the future. It is also important to note here that in the future once TYler has become more engaged intthese routines an has better communication system, we will being to fade out these antecedent strategies as they will not longer be necessary.

Sensory: Sensory activities such as painting, beans, water, shaving cream, etc. might be a great opportunity to engage Tyler and Ben in the same routine. During these routines it might be an optiomal time to have Ben engage Tyler in play by sharing items with him or providing him with apreferred sensorty input such as dumping beans on his head.

Create very clear beginnings and Endings for activities.

January 23, 2008 - Reasons for diet

This is a dietary intervention to lessen the digestive and bowel issues sometimes found in children with autism spectrum disorder (ASD). Recent research indicates that there are children with a genetic predisposition to the disorder which is then triggered by some as yet undetermined event – a vaccine, environmental toxin, or virus – which can cause a "leaky gut" (sometimes evidenced by resulting chronic loose stools as the child cannot properly digest these proteins.) If this happens, wheat and dairy are then metabolized as opiates. It is believed that by eliminating gluten (wheat) and milk protein (casein), the gut will begin to heal and the child's overall condition will improve somewhat. Sometimes additional factors are in play and must be addressed as well before positive change is seen (such as yeast overgrowth, as an example). Because the diet is considered an "alternative" therapy, school administrators, medical personnel, and others often view it with skepticism. But, for some children, eliminating gluten and casein helps lessen self-stimulating behaviors, increases focus, and resolves gastro-intestinal distress. That’s why many parents swear by it.
The diet is not a cure for autism nor is it a substitute for traditional one-on-one intervention. Rather, by making the child more comfortable, the child becomes more receptive to learning (not to mention the potential positive impact in the child’s overall health, demeanor, and possible reduction in negative behaviors).

1/18/08

Updates from Mom: Beginning Sunday, the boys will be comletley off cow's milk and on to Rice Milk. So far the transition has been pretty easy. Once we have them on Rice milk we are going to begin to transition cows milk cheese and cows milk yogurt out of Tyler's diet and begin replaceing them with substitutes. Hope to do this in 1 week. Then the following week we are going to start the gluten free portion of the diet. We've bought hte recommended cook books, etc. and have most of the information we need. The consultant will help us with the rest, including a shopping trip consultation if we need it.

Also, I am really hoping we can get the video clips up this weekend. We have clips of snack time, playing with pop up toys as well as ring around the rosie (i think). One of my biggest fears about letting others watch or play with Tyler is that htey do not realize when he becomes overstimulated and then he bangs is head. We want to help people learn those signs and help them know how to prevent hte headbanging and reinfornce the communication that occured righ tbefore the head banging. We were able to catch that on video today so hopefully next week I'll have a clip. THe signs are subtle, and will be helpful for you all to see it.

Tyler is doing a wonderful job of immitating sounds, including new sounds, which was non existant a few months ago. He's doing so well, we are so proud.

Ben went to social group and had a ball. He was also a very good sharer. At one point a little girl took away a toy and he didn't even make sound. The mom asked her daughter to apologize and Ben said "sorry" so cute! He said a 6-word sentence the other day. I was very impressed.

I'll try to update this weekly.

Interventionist Session Note Summary: Ben joined us doing our session today. addition, some notes on the consultation visit to the social group are also included.

Handwashing Feedback (tyler): The handwashing routine looked awesome. It was great to see Tyler using the stool independently. it was nice that he was reaching for the faucet independently. The primarty goal continues to be to get Tyler to complete specific steps of the routine in a more independent manner. The caregiver continues to do a wonderful job of moedeling key words and actions through the routine.

Snack Feedback Note: The snack routine was also targeted during our session this morning. Although he did not engage in snack for an extended period of time, Tyler did do a good job making choices and indicating when he was finished with a gentle hand push. The caregiver should continue to implement the strategies as listed above with a focus on modeling appropriate requests and providing opportunities for choice making. Ben also participated in snack this morning. Ben was not initially interested in participating in snack, however; when he was offered the opportunity to sit at the "big boy" table he changed his mind. While the "big boy" table is a great strategy to involve Ben in snack in a fun way, I would be careful not to offer it when he is demonstrating some non­functional behavior like whining or yelling. Instead, I would recommend proceeding with snack with Tyler and when Ben is ready to join and is demonstrating appropriate behavior that is when I would offer him the opportunity to sit at the "big boy" table. Ideally, the "big boy" table should only be available when he is demonstrating "big boy" behavior .

General Feedback (Please note that this feedback also includes feedback from the social group observation):
o When re-directing Tyler and Ben from an activity, I would recommend that the caregiver continue to say "No thank you" in addition to providing alternative activity or toy choices.
o Tyler Feedback: Really push for the eye contact and more complex request from
him in the next couple of weeks. Holding out, sabotaging, and surprising him during the
routine are good strategies.
o Ben Feedback: When he yells "No" in a loud voice, I might recommend modeling "No thanks" in a calm voice. When he starts to imitate this model, I would provide him with a lot of social praise in an effort to increase this response. When Ben is having a hard day, I might stay away from asking him wants to do because this a trigger for some non- functional behavior ("NO!" or whining). In might pull out a couple of toys and start playing with them. If he joins you in playing with toys, I would provide a lot of social praise in an effort to increase that response. If he does not join in, I might just let him hang out on his ownfor a while until he is ready to play.

Parent Strategies:
o Continue to adjust the difficulty of a task based on Tyler's arousal level. If he is agitated you may decrease the difficulty and if he is really well regulated you may increase the difficulty of the routine.
Increase complexity of request: During activities when you know that Tyler is highly motivated you will ,vant to increase the complexity of the request by either requiring both a hand pull AND an gaze or by modifying the environmental arrangement.
Modifying the environmental arrangement might include putting an item up on a shelf, which will increase the response effort in that he has to use a larger visual scan to locate the and then has to approach the caregiver for assistance.

Sharing time between Tyler & Ben: In situations where both Ben & Tyler want attention, I might recommend utilizing a kitchen timer with Ben to let him know when it is his turn. You might show him the tll1er and then let him know that when it buzzes that it will be his turn to play. In the beginning, I would recommend keeping the time Ben has to a wait to a short duration (i.e. 2-3 minutes) and providing a significant amount of social praise while he waits. Once he begins to understand the roultine, it will be appropriate to set the timer for longer durations.
Be creative and consistent with transitions.
Vocalizations: A great to evoke vocalizations are during "rhythmic" activities such as
swinging, wagon rides, bouncing on a ball, jumping on a trampoline, etc. During the activity the caregiver would model the word or sound while the child is engaged in the activity and then intermittently pause to see if the child will emit the word or sound spontaneously. If the child emits the word/ sound spontaneously, the caregiver win immediately continue with the activity. If the child does not emit the sound after five seconds, the caregiver will model word/sound and then continue on \with activity.

When introducing new toys, the caregiver should avoid placing demands on Tyler and his interaction with that toy. Instead the caregiver should allow Tyler to explore the toy while also modeling appropriate/functional play.

It might be helpful to pick a couple of signs in addition to those that the caregiver is having Tyler currently practice for modeling purposes only (i.e. The caregiver would only be modeling these signs rather than prompting Tyler to sign them at this point). The more exposure that Tyler has with signing paired with vocalizations the better.

Prior to an activity or routine, the caregiver should have a general idea of what roles he/she would like Tyler to have that
or routine.
Think about making the table a fun place by doing various preferred activities at the table throughout the day.

If you give a direction or place a demand try to follow through with it as much as possible. If it is not a task that Tyler can complete independently the caregiver
should be sure to immediately put appropriate supports for him to be able to complete the task successfully.

1/16/08 Update

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