092608

I'm super excited, the study coordinator called yesterday to discuss ways to make playgroup more useful for Tyler and I and also to discuss how they can better smooth the transition between teh two pieces of the study, Tyler was the first one enrolled in the parent intervention portion of the study for a few months so he was kind of the guinea pig in all of it. Anyway, the coordinator told me that two new families will be joining us in playgroup and it just so happens I know one of the families. I met the mom and dad at the workshop I attended regarding verbal behavior. The family that was already in the study was having trouble making it to the sessinos so often it was just Tyler and not really a playgroup. I'm happy to haev new families joining especially since I know one of them.

Lots of other stuff going on but really busy right now so will hopefully catch up next week.

09/23/08

Tyler is doing really well at signing open and milk on his own and it's generalizing in all environments and people. In fact I was really excited at playgroup on Tuesday I asked if he wanted something to drink and he looked at me and signed milk. It was great because I didn't prompt him with a milk sign or the word milk which means he knew how to answer my question, he's a smart cookie!

Ben is having a fun visit with Aunt Susie this weekend which will give me an opportunity to get some one on one time with Tyler, we are also in the midst of re-diong the boys bathroom so I'm hoping to get that painted this weekend. I'm really going to work with TYler on his signs and getting him to sit down at a table and to stay seated, those are my goals.

P.S. Jenny McCarthy is scheduled to be on Oprah today, I assume to promote her new book.

9/22/08

Let me first start with how amazing Ben's special night turned out to be. I feel guilty even writing this but it was so nice to be able to go out with just Ben. Everything was so relaxed and enjoyable. I think the last time we were alone with Ben he was 8 weeks old so it was such a treat to spoil him. We realized what it must be like for other families who get the opportunity to have one child at a time vs. two and then the whole special needs situation throws in another added dimension. Anyway, I'll just leave it that the night was amazing and we agreed we needed to treat Ben to both parents more often. Anyway, here is a picture of Ben out to dinner and he was eating dirt (pudding and oreos) and was in heaven. We then went to a friends house for outdoor movie night which was great. Ben watched it for about 10 mins and decided going inside to play with the Thomas train set and table was more fun. Now we know what to get him for Christmas!

As for Tyler, he has been a bit off lately, I think it may be due to the colds. He's been difficult to engage in activities for long periods of time and he's also been more active than normal, i.e. wanting to run in circles more than normal. This could just be because we are having trouble engaging him so he's doing it himself. Anyway, we discussed how to get him back on track which leads me to the next topic; verbal behavior. Verbal behavior is an approach based on the workings of BF skinner. Without going into too much detail, we are advocates of this approach and have recently learned how to practice this at home. We brainstormed as a family this weekend (dad, mom, grandma) on what we need to do at home to make verbal behavior a possibility. We need to rearrange the environment, set up rewards, and basically change some of our schedules and there are a lot of things we need to purchase to help support the environment. I'd be happy to share more details, if you have any questions, just send me an email. Anyway, I'm really excited about this new path we have for Tyler.

9/15/08

This weekend was the annual Duffey Adams 5K to benefit the Judson Center. This is a relatively small event with all proceeds going to the Judson center and their Autism Connection program. I ran very well at 25:30 for an average of 8:14 per mile. I was pretty proud of my self, even won a gold medal for my age group. Although I was happy with the results, the event was so much bigger than my running success, maybe that's why I could never seem to catch my breathe during the race, so many emotions. I think about all of the people at the event that deserved gold medals.

#1) Do you wanna know the difference between a mom with at typically developing child and a mom with a child on the spectrum? All you have to do is watch them. When most moms are in conversation with another adult and their child interrupts, the mom will either A) ignore the child until they are done with their conversation B) ask their child to wait patiently until mommy is done talking or C) yell at their child for interrupting. Do you want to know how a mother of a child with autism will respond? There was a huge inflatable set up at the race. Mind you it was pouring out but the kids were having fun playing and jumping around and sliding down the slide into the wet/muddy grass. Most adults were hovered under the outdoor tent area. Anyway, this one boy, maybe 10ish? kept running from the inflatable to his mom each time he went down the slide. He wanted to tell her about his experience, whether it be that he can' t put his shoes and socks on because his feet are wet and muddy or that he went down the slide really fast or to see if she could come play with him, he just wanted to share it all with her. I watched the interaction 3 separate times and each time the mom was talking to another adult. Do you want to know what that mom did when her son ran up to her? She stopped whatever she was doing and gave him all of her attention, gave him huge smiles and in fact said "I LOVE YOU SO MUCH!" each time. I'm sure there was probably a time in her life when her son didn't' say much of anything and she longed for the day he'd tell her about the slide and his wet muddy feet. It was such a wonderful exchange.. she was so genuinely excited for her son and he was so excited to share his experience with her. What a mom, she deserves a good medal!

#2) Stephanie Harlan deserves a gold medal. I blog about her often but I just find her story so inspiring and she not only helped her son but being the Director of the Judson center, she helps hundreds of other families. Stephanie would not accept autism as a lifelong diagnosis for her son. People like Stephanie continue to give parents like me hope.

#3) My favorite gold medalists would have to be Justin and Sam. Justin is Stephanie's son and Sam is the son of another Judson Center employee. If you went to the rally, you would have met Justin, he helped with the Top 10 reasons to support autism insurance. Steve hadn't met Justin so before the race I asked Stephanie if Justin was there and she directed me to the swings where Justin was playing with Sam. Steve and I walked over to the swings and stood about 10 feet away from the boys, who were probably around 11 years old. Anyway, we just watched them, laugh, play, and talk! I could not help but start to cry and I hugged Steve and just cried for a few minutes. Why? Because those boys beat autism, they have recovered. They no longer fit an autism diagnosis. They are typically developing little boys having the time of their lives. Has it been easy for them, heck no, I've given both of their stories before on the blog, they've worked tirelessly along with their parents to get to where they are. Hearing stories about kids who've recovered is one thing, seeing them with your own eyes just a few feet away from you, is indescribable. Thank you boys for your incredible inspiration and sorry about the crazy strangers who were staring at you!

#4) As for this weekend, my friend and co-worker Amelia who came out to race and brought a friend to the event, definitely deserves a gold medal. She's been tremendously supportive including going to an evaluation for Tyler with me as well as participating in the rally at the capital and being a part of our walk team for autism speaks in October. Thanks a million Amelia. Another big gold medal to Steve who came out to support his wife during a very cold and rainy Saturday morning and stood out in the rain to cheer me on. More importantly, he provided much needed emotional support for what was a very emotional day.

As for how the boys are doing right now? They both have cold, yes again, we had May and June off and it seems now we can't seem to get another healthy streak going. however, Tyler has been very very talkative and we really got him talking last night in the bathtub, we've been adding new routines to tubtime and it's goign well but also making it a bit harder for Tyler to get out of the tub which I think he's ready for the challenge. So last night he was pretty much yelling at me telilgn me, I'm sure trying to say he was not happy about the fact that mom would not turn the water back on, however, he never tried to injure himself, yeah. He yelled at me, I talked to him about him being mad and helped him learn the "mad" faces and tried to get him to say mad and then told him we'd go have milk and read books and he actually reached out for me to get him out of the tub. Ben is getting a night all about Ben this weekend so I'll write about that later in the week, but we are both excited to be able to spoil Ben a bit with attention from both parents.

In summary, please be understanding if we seem to be rude and not fully engaged in conversation with you, especially if our children are trying to interact with us. We need to reinforce Tyler's communication as much as possible and of course Ben is constanty competing for attention so any chance we get, we want to make sure he feels loved so there's just little room for adult conversation while the boys are awake, but we wouldn't have it any other way. Although I occasionally ask Ben to whisper cause his volume is distracting Tyler or even hurting his hears someitmes, I would never ask him to be quiet. Once you have a child that can't speak, it just doesn't seem right to ask the other one to be quiet when you are praying one will talk someday.

091008 Update

I just found out Jenny McCarthy is coming out with a new book,
http://1in150.wordpress.com/

"No two autistic children heal in exactly the same way. And in her new book, Jenny expands her message to share recovery stories from parents across the country. Mother Warriors, shows how each parent fought to find her own child’s perfect “remedy of interventions” and teaches parents how to navigate safely through the many autism therapies."

I can't wait to get it! Those stories are always so inspirational and help keep us going.

On another note, we've been busy lately which is why I haven't really written much in the blog, sorry about that. We tried some new things this weekend. We went to a new indoor play area which seemed to go pretty well although it doesn't seem as nice as some others we've been too. However, I did talk to the manager about their policy where you can't bring in outside food or drinks and she said it would be fine if needed to do it for Tyler in the future. so that's always a bonus! After we left there, we had picnic in the car, which was intended to be more of a tailgate but the beez were awful so we ate in the back of the van, just picked Tyler's stroller rightup and put it in the car (he can't hold still and eat on his own). So then we planned to go to a parade and since we had started eating lunch when the parade began, it worked out perfectly. Tyler can't hold still so just having him stand and watch a parade is impossible. We took him in a stroller and brought many hands on, musical toys for him to play with. We weren't sure how he'd handle all the people or the loud sirens so we wanted very stimulating toys to keep him engaged and comfortable sitting still. For the last few minutse ofthe parade, Dad just pushed TYler around in teh stroller as we had run out of things for him to play with. The great news is....Ben got to see the whole parade! We realized its a much more succesfful trip if we catch the end half of somethign rather than the beginning half. Ben feels like he got to see all of it and we are able to keep Tyler occupied for small amounts of time. Everyone is happy!

Our current goals for Tyler are to get him touching and experiencing new textures, etc. but also I'm going to come up with a plan for us to really work on a "come here Tyler", routine as well as a "stop" routine, and sit. I need to lay out a plan and then give it to Grandma, Dad, and daycare so we can all follow the exact same routine structure until he becomes familiar with it and expectations. It's too long of a story to type how I'm gonna do it but I think these will be great skillls for him to have before school as well as at home or when we are out in public. I'd love to be able to stay "stop" when Tyler runs ahead of me on a walk or at the mall and know the he'll follow my request.

Our daily goals are to just work to make him a more independent boy, put on and take off his own cltohes, wash his hands independently, brush his teeth, eat independently, etc. We also work to expand his receptive language and helpign him to communicate with Ben.

I'm still trouble shooting the whole Ben being scared of Tyler issue. Ben hugged him twice this weekend, yippe. And I did witness somethign pretty exciting. I went to the kitchen on Sat a.m. to clean up breakfast and left Ben and Tyler playing in the living room. Tyler was playing with a wooden train which he really hasn't showed much interest in until recently, apparentyl Ben wanted the train because i heard a huge loud scream from Tyler and ran in there and Ben was backing up. So Mr. Ben tried to steal Tylers train (which he only does when I'm not in the room) and instead of biting, pinching or pushing, Tyler yelled. It was great, he communicated verbally his displeasure. I went to Ben and told him that was the way Tyler says "no thank you" and that when Tyler was finished, Ben could have his turn. I'm going to now work with Tyler on using his hand as a stop and then toning downt eh scream to hopefully a polished "no" at some point. But also help ben understand when Tyler says no aand the possibilty of offering another toy to Tyler in exchange for the one he wants. Sharing is hard at this age for typically developing kids so we just watn to make sure that no one is getting seriously hurt and that B en and Tyler have a way to understand eachother even if they don't agree :)

An another note, Tyler had his monthly evaluation at U of M this morning. Steve said he did pretty good but of course struggled with the imitation play. Steve did comment on how there was another boy in the waiting room with them who was around 7 and was pretty severly impacted by autism which caused Steve to reflect on our journey so far and made him quite happy about where we are with Tyler.

He also started back up with speech adn OT this week as they had been on summer vacation for a couple of weeks.

Tylers angels is no longer in 1st place :(

9/9/08

(great article in today's free press, the walk/race mentioned is the one I wrote about a week or so ago, I'll be participating in that as well.

I know I've had some downer posts lately so I thought this one would be a great pick me up. Another successful recovery story :)




When Teresa Summers first learned her son, Sam, had autism she felt as if her world crumbled.



"You imagine the worse-case scenario," said Summers, 43, a single mom in Hazel Park. "Many children are institutionalized and never live independently. Many have aggressive behaviors. You mourn the loss of the future you'd planned for your child."
But rather than wallow in despair, Summers got busy, researching information on the Internet and seeking sources of assistance.
Sam was 16 months old when he was diagnosed with autism, a neurological disorder.
Within weeks of putting her son on a special diet that she learned about through her research, Summers began to see signs of improvement.
By the time he was 3 1/2, doctors no longer categorized him as autistic. Since kindergarten, he has attended regular classes in a regular school.
After Sam started kindergarten, Summers began doing volunteer work to help other parents. Her volunteer work led to a paid position at the Judson Center, working at the Royal Oak and Clinton Township offices where she is an office coordinator.
The Judson Center, a nonprofit social service agency with offices in 10 Michigan counties, offers services aimed at helping children, families and adults cope with and overcome various challenges.
On Saturday, Teresa and Sam Summer will walk in the second annual Duffey Adams Run for Autism at Kensington Metro Park in Milford. All proceeds raised will benefit the Judson Center's Autism Connections Scholarship Fund, which helps families pay for services at the center that they otherwise would not be able to afford.
Summers formed a team called Sam's Super Stars and hopes to raise $1,000.
"I have a very strong desire to help other families, to give them hope and put them on the path to helping other children reach their potential," Summers said Monday. "All children are different. But all children can make progress."
The strategy that helped Sam progress is similar to a plan popularized by actress Jenny McCarthy, who found great success using it with her son, Evan.
The plan involves removing wheat and dairy from a child's diet and adding nutritional supplements. It also bans artificial preservatives, food color and dyes. It's commonly referred to as the GFCF diet for gluten-free, casein free.
Summers put Sam on the diet when he was 19 months old, 3 months after a friend suggested he be checked for autism.
There were signs that something wasn't quite right.
He didn't speak or gesture, he didn't play with toys the way other kids did, he had very bad temper tantrums and he expressed little or no response or affection to people, even his mother.
Two weeks after starting the diet, her son went from saying no words to 20.
Summers said the memory she cherishes most is when Sam looked up and smiled at her. This happened one day a few weeks after beginning the dietary intervention.
"I wouldn't have believed it," she said. "It felt like God had given me my little boy back!"
In addition to the diet, a behavioral therapist worked one-on-one with Sam.
He also participated in small group therapy sessions at the Judson Center.
Summers offers this advice for other parents: "Become your child's advocate. Trust your instincts. And never ever give up hope."

9/3/08 - Heartbreaking

When you hear about people having twins, you probably think of how you've heard of the incredible bond that twins have, they can feel each others pain, they know if the other one needs them even if they are miles away, etc. We had these same dreams for our boys. From the moment we found out we were having 2 boys. We thought, they'll have life long playmates, they'll always have someone who will be there for the other even after Steve and I are long gone. Obviously we didn't anticipate or plan for Tyler to have autism, but you just roll with the punches right? We just need to show the boys how to play together. It won't come naturally but we'll pull together as a family and help them develop the best relationship possible. However, I wasn't prepared for Ben to so early make comments about Tyler being different.

During bath time on Monday, Tyler was a bit over excited and was trying to play with Ben. Tyler had his jaw clenched a bit and Ben got scared. I was trying to get Tyler to give Ben a "gentle" hug and that way I could make sure Tyler didn't get too excited and hurt Ben but Ben didn't want to have any part of it and just wanted out of the tub. I laid Ben down on his towel and he said, "Tyler's crazy"... My heart broke for Ben who deserves to have that twin relationship that everyone imagines twins to be. My heart broke for Tyler cause it marked the beginning of a life of stares, whispers, mean comments, and even bullying. I mean if his brother thinks he's crazy, imagine what other kids who don't love Tyler will think or do, as I've put in previous blogs, even teachers and school officials can be downright abusive.

So how did I respond to Ben? With tears rolling down my face I said, "oh honey, Tyler's not crazy, Tyler has autism. He may be a little weird sometimes but he's far from crazy. He loves you very much and we love you very much and you are great big brother (he is a few seconds older). We are still trying to figure out where Ben got the term "crazy" since we never use it but haven't quite figured it out yet. Steve also talked to Ben more about it last night when the boys were playing cars cause Ben didn't want to hug Tyler. Ben admitted he's scared of Tyler so Steve had Ben giving Tyler the cars and getting them to interact in a positive way with play which is all we can do right now.

As Carrie once told me, in a year or so, Ben will be one of Tyler's best therapists. He is already a very nurturing and caring little boy. I stubbed my toe the other day and he came running and said, "it's ok mommy, want a hug"; so sweet. I have no doubts about where his heart is. We also plan to get Ben in to Sib Shop support groups as soon as he's old enough to make sure he has other kids to relate too. Another U of M staff member at playgroup yesterday told me of her sister who had twins and one had a blood clot and had a lot of trouble as a newborn which causes some physical disabilities. They didn't play together at first either, but now the typically developing twin has learned to adapt the way he plays so the other twin can be included. It just takes time.

If there is a chance that Tyler doesn't have to face a lifetime of bullying and mean comments, a chance that he can have a normal relationship with his brother and friends, a chance that he can lead a happy independent life, would you not do everything you could to give that to him? Many thought we were crazy when we started this endeavor and I'm sure some still do. To those people I say, live a month in our shoes, feel the pain in your heart when your son tells you the other one is crazy, feel the panic when Tyler bends down to the sidewalk to slam his head into the ground and you only have split second to catch him, feel the anger I feel when ignorant people speak about autism but have no clue.

So on we march.. we do what we can to educate those around us about autism to help make the world a little bit more understanding and tolerant for Tyler. You may have noticed that during the democratic convention, both the Clintons specifically mentioned autism during their speeches! Both presidential candidates support autism initiatives, however it has come to my attention that Sarah Palin has reduced special education services and made cuts in her home town. Interesting since now she has a baby with down syndrome so not sure how that all plays out, but the world is changing, thank goodness. There was a story the other day about a 13 year old student in Georgia who hun himself because he was basically stuck in confinement 7 hours a day while at school. I just can't accept a world like that for my son. I can't and I won't. Thank you for joining our fight!

9/2/08 Update

Saturday Dad took Ben to Grandma's to go to the zoo so Tyler and I spent some one on one time together. I had him in and out of the car a lot more than normal since it was much much easier with just him and not Ben too and it gave me a good chance to work with Tyler out in public and in new settings. We also went ot the park and went swimming, Tyler and Mom both had a great time. Ben had a great time at Grandma's too. I am adding a video of him feeding the giraffes.

Tyler did some pretty cool things last night. As most of you know, Tyler isn't really that over fond of eating. He does it because he has too but in general, if he could get by in life w/o eating, I think he'd be happy about that. So mealtime is a "routine" we work on and it's always a work in progress. Sometimes he'll eat mostly on his own with utensils if you put the food no teh utinsil, sometimse you have to feed him almost every bite, sometimes he'll sit down happily in his chair sometimes it's a struggle just to get him to bend his legs, sometimes we have to use books as a support to get him to eat, sometimes he'll eat without any of the distractors, it just depends on teh day or even the meal. But what I've never known is whether or not he understands the phrase "time to eat". The only way you nkow what kids understand is if they respond to your request or sentence and since he doesn't care to eat, he typically doesn't respond. Last night I was at the table and Tyler was in the foyer, and i said "tyler it's time to eat" and he came running to his chair, yeah! I know most of you probably don't think this is a big deal but it's huge to me because as of a few months ago he didn't respond to any of my "verbal" requests, meaning, no gestures, no signs, no prompting, etc. and now he did for something he really doesn't like to do. That's huge!

Play group went very well today. The other little girl in the group was sick so it was just Tyler and me and then 4 other woman from U of M. Since it was just him, it really gave them a chance to get to know Tyler and his skills and how he communicatse and what his likes and dislikes are. We've been having a lot of trouble getting Tyler to go into Dad's car after playgroup but also in general, he doesn't like to get into the car seat in dad's car. We tried a new strategy today and it went well so we are going to use the new strategy for a while and try to break his bad behavior cycle. Usually Dad meets us in the parking structure which is about a 5 minute walk from the room Tyler and I are in. Today, I had dad meet us in the play room and gave dad a "new" toy to give Tyler once he sat in his seat as well as a fresh class of juice. I'd stay behind in the room until they were well on their way. He fussed a little at first when I wasn't walking out with them but dad worked through that. I called Dad on his way to take T yler to daycare and he said everythign went smoothly, yeah. With Tyler it's all about planning ahead a few steps and then changing routines if they aren't working.