5/18/09

We discovered something so fun this weekend. There is an alphabet game online that Tyler has played once before (but only for a few mins) and basically you push a letter on the keyboard and then the computer says the letter and it's shown on the screen and then an animal comes up that begins with that letter and the animal makes a sound. Anyway, Saturday night I was looking for something fun for Tyler to do (Tyler has to have scheduled activities/structured in order to get through the day, otherwise he'll just tend to run back and forth). So he played for a few minutes, pushing letters and seeing what comes up on the screen. I wanted a way to interact with him and the game but wanted to try something new. (see video) So as I posted a week or so ago, school said that Tyler read the card that said dog and signed dog without a picture. Well i tested Tyler and the game and asked Tyler to find the hippo instead of where's the H and he pushed H and the hippo came up. I asked him "where's the flamingo" and he'd push F to get the flamingo.. it was soooooo cool!



Talking about progress and recovery makes me realize how far we've come since we started. I've occasionally asked those parents who have recovered children to see video's of their kids when they were young and were still impaired and many of them do not have videos. We realized we only post the great fun things Tyler does, learning wise, but not the other things that make day to day life so difficult at times. We want to capture all that is autism in this blog so that one day we can look back and go wow..... I can't believe that used to be the way things were, look at him now (hopefully). We also got some cards printed out from the autism society of america that basically say thank you for allowing us to enjoy the every day life activities that your family takes for granted, my child has autism, please contact blah blah blah for more info. This will allow us to educate people when we are out in public that may judge us for his behavior or the way we support him, i.e. videos at a restaurant. Keep in mind that we almost NEVER go out in public with one parent and both kids. My aunt mentioned to me this weekend that taking Ben is no problem, but when you add Ben and Tyler together, the dynamics are incredibly different. Tyler requires a significant amount of support before we can go out in public with him with two parents. This weekend, Steve took his mom out to dinner for Mothers day so I was gonna take the boys and the dog for a walk. Tyler loves his bike so I was gonna have Tyler ride his bike (I can help push since he can barely reach pedals) and Ben was gonna walk. When the boys were napping I got all the stuff around, including putting two small hand toys in the back of the bike. If anyone stops to talk to yus along the walk, Tyler loses patience quickly and will melt down if we aren't moving, these toys allow us to keep him content in case someone talks to us or we get delayed for some reasons. Well Tyler didn't even want to go out the door. Let me start over. I had to give Tyler a warning that we were going outside soon, then I had to count him down from the toy he was playing with (5, 4, 3, 2, 1) then say/sign all done. Then go towards door, he started kicking up his feet not to go out. So we get him outside finally (dog going crazy cause he want to walk, Ben asking me why TYler is crying), I sit him on the bike and he's sobbing. So I say ok.... let's try the wagon. We go to the garage, I sit Tyler in the wagon (he's still sobbing an dI don't know why, so hard when he can't tell me), I begged Ben to stay right there with Tyler and dashed inside hoping tyler didn't climb out of hate wagin before I could get back) and I got his book and pen. I ran out, by now he stopped crying so I was able to give him the book and the walk went ok. we got back adn I got Ben out, I unhooked Clifford from the leash and then got Tyler out, Tyler tripped on the wagaon handle and fell onto the cement into the bike that we weren't able to use, so I pick him up, ask Ben if he can come help me pick up the books in teh mean time, I hear clifford growling.. I look over and Cliffor is at the sidewalk growling at another dog and a little girl going by.. lovely.. so ben is annoyed that Tyler is crying again when the only reason Ben went on teh walk is kownig he got to go on swings and slides aftewards, Tyler is sobbing, and the dog is attacking the neighborhood kids.. I run over with Tyler in arm, screaming at the dog, apologizing to the girl and then gather everynoe upand get them inside. I had to get Tyler a lot of stimmy toys (he's learning table, books, piano, etc.) and move them out on the deck so he could calm down (still crying) and I could push ben on the swing, he had waited so patiently. I let Tyler be stimmy on his toys for a good 5 - 7 mins before I approached him to play on the swings (wanted him to play functionally but needed him to calm down and needed to give ben attention too) so eventually it all worked out but that's what it takes just to go on a 15 minute walk around the houe and there are still no guarantees that it will go well as in this case. So we are gonna try to capture more of these types of things on video as well as teh successes.

5/14/09

Here's the video i've been wanting to post. So a couple of things I wanna point out in this video. I'm asking Tyler to imitate me as well as sign some items on a card.. in other sessions I also have him make the sound I"m making but it's just not in this clip. You'll see me block an incorrect response. Clapping hands and patting on head are pretty easy for Tyler so I looped in a tougher one which was to touch his nose, he struggled with it..i.e. not doing it is the same as an incorrect response so I block that response but going back to something i know he can do on his own (although we have worked on nose pint before) and then I go back to the touch the nose request and help him do it before he can make a mistake...errorless teaching. So just wanted to point that out to everyone...part of verbal behavior is to block incorrect responses and replace them with correct responses so not to teach an incorrect response. I also realized after watching the clip that i need to clean up Tyler's fish sign a little bit. Oh and in case you miss it, his reinforcer for doing all this is his leapfrog tag book... We'd go through a sequence of demands and then he'd get to play with his book for a little bit and then I'd count down to alert him we were gonna do some imitation skills again and I'd be taking the book away, and then he'd go through the sequence (which was a bit different each time) and then he'd get the book back. He's beginning to like more of the books we have too which is great so it will continue to be reinforcing as it will not longer work once he's bored or not as excited about one of the books.


On another note, school said that the day Tyler struggled with transitions, he had a new parapro working with him. He had a great day yesterday working with the person he normally works with. I didn't see her there this morning so we'll see how today goes.

I had another dream Tyler could talk last night. This time we were singing "colors of the rainbow" and he started telling me the colors..it was so great.

5/13/09 Update

Wow..there's a lot going on in the news right now. Many articles are being posted about the a study which shows that about one out of every 10 children can recover from autism by age 9. My philosophy on that.. I had one in 10 chance of having twins so..... :) Cross your fingers that our boy will be one of those 10 percent of kids..we are trying so hard.

http://www.msnbc.msn.com/id/30645770/from/ET/

On another note, school is having trouble getting Tyler to go outside on the playground..once he gets out and plays he's fine but for some reason he's struggling to get out the door which of course makes me think back to when I had trouble getting him out of hte car to go to the park playground. Everyone is started to question whether or not he's sensitive to the wind so they are looking at that closely adn will address it if it continues. Tyler had a rough day at school yesterday, they said he ahd trouble transitioning from one activity to another or one toy to another which usually he does not have very much trouble with any of these things. Steve said he did fine at home. We've noticed some resistant on Tyler's part getting into the bathtub for the last month or so and Steve said he got into the bathtub just find last night so hopefully he was just not intersted much in school yesterday and it was just a fluke.

Now that we've had a few weeks of health at our house again, we are finally gonna move forward with the next steps of Tyler's biomedical therapy. We've had the medicine we needed forever but was never able to give it to him due to all the illnesses this winter so steve's gonna make sure we have what we need and it's still good and move forward. We do know to expect some regression during this time and to expect to see more "autistic" like behaviors, we'll see. We wanna keep moving forward that's for sure.

There is also soem news on the bc/bs insurance front. In my opinion it is their way of avoiding lawsuits for discrimination and avoiding having to support the autism bills but putting together their own policy which has significantly less coverage than the autism bills but hey.. i guess life is all about baby steps so we'll take what we can get. Nothing is for sure yet so if anything ever were to become official I'd pass it along.

We are working to get Tyler's summer programming done. We have an appt at the Judson Center (remember the races I do in the fall for them and Justin and Sam's mom's both work at Judson) for an intake appt to get him enrolled in splash camp. See below for a description of the camp.

SPLASH CAMP for AGES 3-6 August 3-21 M-F, ½ day a.m. Location: EMU Children’s Institute $250 per week x 3 weeks = $750 Therapeutic small group work with the ACC-EMU SLPs, OTs and Music Therapists promoting engagement and social growth with similar peers. Low camper-to-staff ratios and creative weekly themes developmentally appropriate for preschool. . Preschool servicse are offered for a few weeks in July and I plan to work a flexible schedule in June once school is out to build on Tyler's skills. Really want to get him eating independently which includes drinking from a regular cup, to improve his skills on taking on/off shoes, pants, etc. Also want to do more gross motor imitations and work with him on sound and word approximations.

Someone sent a message out on the boards yesterday about someone who is an EMU Special Education major who is looking for work this summer as a nanny/sitter and has an interest in children on the Autism Spectrum and also experience with swim instruction. She will be working at the SPLASH preschool summer camp program at EMU in August as an aide...but has the following availability now-July and then daily after 2pm in August. So Steve and I talked very briefly about contacting her to possibly have her work with Tyler this summer on days we do not have much planned for him. We have acccess to a pool and she is a swim instructor as well so to get him swim lessons woudl be great due to his attraction to water and the risks that that poses. Anwyay, we don't want to lose his spot at daycare so we'd need to figure out a way to pay for both but if we do it occasinoally a few weeks here or there hopefuly it wouldn't be too bad. Again this is just all just some ideas we are throwing around to make sure we get the most of out of the summer months.

That's about it I guess. Hopefully I'll remember the camera tomorrow so I can upload the vidoe of Tyler and I working at teh table where he's immitatding what I do. It's a great little video so I'd like to get that posted.

When I first started worrying about Tyler having autism, there seemed to eb no hope, no one to tell us how to help him, no one i talekd to even mentioned recovery. one o fthe docs I talekd about about ABA said that unless he has behavior issues, he doesn't need it (WHAT!!)))Not only are parents posting recovery stories all over the place, but now for doctors to be posting them... welll I just say please cross your fingers and pray every day that our little guy will be one of the lucky ones..... and if not, we will know that we did everything possible to help him and we will love and adore him all the same.

5/11/09

Tyler visited some relatives this weekend and they hadn't seen him in a while. They commented at how great his complexion looks, i.e. not sickly (just a reminder that this changed when we switched him to the gfcf diet). She also mentioned how he's making great eye contact, even with the people he didn't know. His sounds seem to be more appropriate for language vs. grunts or squeels. And she said he definetly has a way at getting his point across and making sure his needs are meant, even if he doesn't speak them.

So that's great news. It's always great to have feedback from family who do not get to see him very often. we see him every day and sometimes miss those little successes or changes that happen so gradually we may not notice them.

5/4/09

So there are obviously many reasons it's hard to be the mom of a child with autism, I'm sure I've discussed most of them in this blog at some point but this weekend I encountered one I haven't written about yet. The other day I wrote about how the speech path said that I just "get it"... and that Tyler is in great hands. Carrie used to say the same thing, she'd comment at how well I can read Tyler and anticipate his needs, frustration level, etc. I am very thankful for that, I obviiously want to help as much as possible. I have in the past 2 years gained an incredible amount of knowledge as to how to best help Tyler on all fronts, I'm so happy I have that knowledge and the fundamentals necessary to then apply them to different situatinos or even new scenarios. However, I do not always have the answer. If something is wrong or something abnormal happens, i do not always have the answer as to why it happend.

We took the boys to the park on Sunday, Grandma was also with us. As we are pulling into the park, Tyler gets incredibly upset and starts crying, sobbing actually. Everyone, including Ben starts asking why Tyler is crying. I don't know. I racked my brain to try to remember what, if anything, happend last time we were at the park that would trigger this response from him, and I couldn't think of anything. Everyone is looking to me for the answer, I don't have it. No one said, Melissa what do you think is wrong with Tyler, but all eyes kept turning to me when they were making comments about it. I was being really quiet cause 1) it upsets me when Tyler is upset and 2) I was trying to think about what happend last time and 3) I was trying to figure out my game plan for Tyler to help him get through whatever was bothering him and get him into the park. So I just couldn't do/say antying to make everyone else feel better about it all at that time so I just was quiet. When we parked I asked that everyone get out of the car and just leave me alone with Tyler who was still sobbing, poor guy. They all got out of the car and I got out one of Tyler's leapster books, between sobs he seemed intersted. i knew I needed to distract him from whatever was upsetting him and then I could attempt the next steps. So I slowly got him out of the car, every few feet he'd sob so I sat in a park bench outside of the park (again another classic autism photo that would have been). I was actually glad he was a bit stimmy with the book as I knew that he was soothing himself and getting happier. At one point dad came over to say hi and he sat down next to us. I said, are you here to make Tyler feel better or are you here to make yourself feel better (tyler was engrossed in his book). Steve was great, he goes, good point. I said Ben deserves to play with his dad right now, Tyler and I are fine. As soon as I was convinced that Tyler was distracted enough to not start sobbing if we moved, we said all done book and put the book int eh car and then went for a walk, I walked away from teh park, into the grass area and we played stop and go, fast and slow hoping to get some giggles. I took him to some nearby bleachers to climb. Slolwy but sureily I walked to another side of the fence from teh entrancxe so he could peek over and look into the park, before entering I wanted him to see the park to see if that would illicit that same upset reasponse, he did fine. So i walked him around to the back of the park, hoping that us entering on the opposite side of normal would break whatever stimulus was upsetting him and it worked. So in summary, one of hte hardest things about being a mom of a child with autism is how much everyone looks at you to for answers as to why something is happening and to say/do somethign to make everyone feel better about it. Sometimes it's all I can do to make Tyler and I feel better about it. I just don't have all the answers, but believe me I wish I did!

Which then brings me to my next complaint... so once again there were uninvolved parents at the park. One little boy kept wanting to swing and his parents were walking around on their cell phones or sitting on the bench. he kept asking Steve to help him swing. It was so sad. the kid was following his dad arounds aying dad, I want to swing, dad I want to... but dad was ignoring him. I just wanted to shake that parent. It took my kid at least 15 minutes just to enter the park and you have a healthy child who wants to play with you and you are walking around on your cell phone ignoring him. It frustrates me to no end....especially when those things happen after we have an episode of sorts that make me realize just how different our lives are than so many others. I long for the day that it only takes one parent to take the kdis to the park. There is no way Ben would have been able to make it through all the things I needed to do to help Tyler without him also melting down. He wouldn't understand why he had to wait and he wouldnt' understand why Tyler was getting all that attentino and he would start melting down to get it too. So one day... one day we will, that's what we do what we do for Ty, so one day we can.

I had another dream that Tyler was talking last night, I can't explain how wonderful they are. Last night was him saying I love you. It feels so good I dont' think I ever wanna wake up from those dreams.

4/29/09

Here's a news clip from Fox which shows the rally yesterday. Steve is famous!! woo hoo.. You'll also see my gurdian angel Amy, she's holding the "i'm my son's voice" sign. I love you guys!!!

http://www.myfoxdetroit.com/dpp/health/Autism_Insurance_Advocates_Hold_Rally

So I don't have too much to talk about today so it's a perfect time to say thanks, to everyone, everyone who is supporting us. You hear Stephanie in the news clip talk about divorce rates being as high as 90% in couples with kids with autism because of the physical, emotional and financial burden it causes ethe entire family. Steve and I have had our share of rough times and without our support system, I'm not sure we would have made it through all of them. So a big huge thanks to everyone who helps us.

Love to all!!

4/28/09

So here is a quick video from today's autism insurance rally at the capital. Steve went with his mom and grandma (thanks guys!!!) and Steve video'd most of it for me. Here's a clip of Sam, I've mentioned him once before when I talked about the autism run for the Judson Center and how Sam and justin were playing on the swings. Anyway, here is Sam basically saying he's proof that early intervention works and to support the autism insurance bills. So cute and inspirational! I love those little signs in life that help keep the journey moving forward.

As for Tyler, all signs are pointing to that fact that he will talk one day, hopefully soon. I'm not sure i mentioned this the other day but the speech path commented at how hard Tyler has to work to just make a sound, you can see him really really struggle to get out a sound and try to move his mouth to get it to come out right (poor guy). So we are all (school and home) really working on sounds right now. Last night I was playing trucks with him. Let me go back a bit, last night was one of those nights where I felt successful in keeping both boys happy, I usually try to get one set up an independent activity so I can interact with the other and then a bit later I do the reverse. It's rare that we can all do the same activty as their interests are different and their developmental level is different, we try, it just doesn't always work. Ok so anyway, last night I played with ben and then got him busy playing his leapster, he loves the alphabet game and then I went to play trucks with Tyler. he got some fun sound/light trucks for his b-day that when you pull them backwards they move forward so we were playing with those. I would pull the trucks back and say "truCK" really emphasizing the "ck".. it didn't take long and he starting makign the "ck" sound.... so then I'd hold out for the "ck" sound before I'd let the trucks go. So if he said "ah" the truck wouldn't go, he had to say the "ck" sound.. of course I'd give him some free turns too so that he'd stay intersted. Anyway, right towards the end he said "ah" and I didnt' do anythign so he immediately said "uh..ck"... woo hooo.. he got it all out except the "t". I immediately emailed his teacher so they'd know his success and I was super excited. well, when I picked up Tyler from school today they said he said "ck" at school today too and was also making the "mmm" sound when prompted to do so. YIPEEE... everytone feels like he's just so close...

So i think a few days ago I may have mentioned how I was in a sad mood cause I had read his ADOS from the fall where it listed him as having Moderate/Severe autism.. well even though I had seen it before and knew all along this is what he had, reading it on paper that day was just upsetting. He's jsut come so far that it's hard for me to imagine what his label would have been like in the beginning. Steve said that today, he saw many kids that were obviously severely affected and his heart broke for them. You just wish you could help everyone and you know that pain that the family must be going through but on the other hand he said, it made him feel good about Tyler that he has come so far and that he does seem so social comparatively and that there just seems to be something that hasn't quite fired up in his brain yet but he seems so close and looks like he tries so hard. So we figure we have a few more "key" steps on the DAN protocol that have really helped some of the other kids like antifungals, antivirals, etc. I'm excited to have some more one on one time with him this summer and the sky is the limit :)