Hi Matt!

We nearly fell to the floor when we heard Thomas greet one of our new friends.

Up until last night, we have never heard Thomas greet someone. In fact, we had it put in his IEP to work on social greetings. Once in a great while he'd say "bye" if prompted. "Hi" or the like, needed lots of prompting. So, last night when we got to the swimming pool, Thomas said hi to Matt and shocked us. What a wonderful shock!

After swimming, everyone came over to our house for a rained out cookout. Fortunately we have a large dining room table. Unfortunately, it's also a catch-all, so we were forced to hurry up and clean it up. Good thing. We NEEDED to do that.

Thomas did great playing with the 4 other kids, ages 3 to 7. He shared his toys without prompting. Another biggy for Thomas. He was happy to show them the climbing wall in his room and let them use it.

Until very recently, we haven't had other kids at the house. Until recently, we haven't other ADULTS here either. We've been fortunate to have met up with 2 other couples with children that attend the Head Start. They are much younger than us, but the kids are the same age, so we have that in common. An interesting twist is that one of the girls was a rival with my daughter when they were 13 to 16. We didn't know that until a few days after spending time with them.

It won't be long before we have to tell Thomas that an aunt has died. She's been sick for over a year now. Thomas knows "she isnt' feeling too good right now." We know she's closer to her final days. Thomas is so unpredictable as far as how much he'll understand. I'm guessing that no matter what we tell him, he'll just go about his day as though nothing happened and then 3 years from now when he sees a pig (her favorite collectible) he'll ask to go see Aunt Dee.

Looking ahead:
Tomorrow we go to a water park in Duluth. I took advantage of an over-50 rate and booked the biggest room. We're getting there early so we can take full advantage of the time. Monday we'll spend more time there, and then to the Aquarium before heading home. Thanks to our Family Support plan, we'll be reimbursed for a membership there, along with mileage. Not bad.

More meltdowns

We had another hellacious meltdown yesterday afternoon, after school. I called his teachers while he screamed to Dan. I found out he didn't have a nap at school (no surprise there) AND that he was actually defiant on the school. That is NOT like him. My reason for calling them during the meltdown is so they'd HEAR it and not just hear ABOUT it. This meltdown didn't last quite as long as others. He used my shirt as a covering over his head (I still had my shirt on, he put his head underneath it at my back) to regulate. He also seemed to calm down a bit by my sitting back toward him to put pressure on him.

What put him over the edge? My asking him to pick up TWO toys..specific toys. I only wanted them off the floor. I gave him options on where he could put the toys. TWO toys among over a dozen. When naming specific toys didn't work, I asked him to choose two toys. He was already gone to meltdown, so it wasn't going to effective anyway.

Today was a completely different day. The three of us went to a catch/release fishing deal at the fish hatchery. The problem was only ONE kiddo caught one. He got a big clingy, but nothing to note more than just that. He surprised me when he was enjoying the squirmy worms on his hands. There were probably 25 families there, most of whom Thomas knew the kids. He also ate lunch there, which surprised me too. He seldom eats food away from home or school. It's so good to see some of those kinds of changes in him.

Tomorrow we're planning on an evening of swimming and campfire with our friends. Should be fun. Thomas loves to swim. Hopefully we can all stay on an even keel tomorrow.

Memorial Day Happenings Around Here

Yesterday was a pretty good day with Thomas.
He was outside for a bit, being sprayed with the water hose. Can you say "COLD HANDS?" We had a cookout at a family relative's place. We brought everything except the porch to put the grill on. We intended to keep it small, so it wouldn't overwhelm Thomas. The original plan was for 7 people, but ended up about 12. He doesn't know six of the 12 people, so we were pleased at how well he did. He and I walked around a little bit. He played on a small playground set. We had to leave a little early though, because he shifted gears on the behavior scale. Someone had used their knife to cut steak and put it on the table, forgetting that there was a six year old present. He got mad when that got taken away. Then, he went after a ball of yarn the same person was working with, and proceeded to unwind it. Then, he took her glasses and ran around. He was in between the talking to stage and the beyond talking to stage, so I just had him gather his stuff and we left. I explained to him all the social graces stuff (in 5 words or less). When got home, he was still a little wound up, but he was able stay 'on target' for the rest of the evening.
He really did do well. I would venture to guess this was much more typical of a 6 yr old anyway. I like those days.

Potty Talk

Very interesting thing going on with Thomas. During the day, he will generally keep underpants on and make it to the toiled in time, but only after announcing that "The pee is ABOUT to come." This is all still relatively new for him. He will change out of the underpants and into a pullup for the poop part, so our guess is that he's pretty close to getting the idea of using the toilet for that too.


This morning, he was with our PCW in his room, building stuff. He came running out and grabbed our hands and said "Come here. I HAVE to show you what I made. Come ON." So, we go with him and see this:



So, what do you think this was?
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He made a BATHROOM CITY!

Meltdowns

Thomas had 2 major meltdowns this past week. One was on Monday. We THINK the trigger was when the personal care worker reached out for Thomas, to keep him safe from our car when Grandpa was pulling in the driveway. None of us can think of any other trigger. We do know he didn't have a nap at school that day. He ended up falling asleep for about an hour and woke up as though nothing happened.

Yesterday was more intense. T. was outside with Dan. T. wanted "one toy" that is in our storage shed, in a bin, along with many others. Dan said "check with Mommy." Uggh. I hate that. Thomas comes to me and asks, and I said something along the lines of "Let's pick out a toy from inside the house." That didn't go over well. I then said "Thomas, you have lots of toys here. Let's pick one so you can take it outside." Too many words. Still didn't go over well. He persisted and you could see and feel the meltdown coming. I asked what toy it was that he wanted. He didn't know. He just wanted ANY toy that was in that shed that I had already so "no" to.

Now, at first glance, this looks like one of those 'let him have the frikkin' toy so we avoid the meltdown moments. I would love for it to be that simple. With Thomas, if we let him within 100 yards of the storage shed, he would race inside and open up all the bins throwing toys behind him, and MAYBE pick ONE. He lost any chance at all with the first punch to my shin. He did the routine kick, hit, scratch, punch, yell, and cover my mouth hard with his hands.

We tried swinging him (PCW took his arms, I had his ankles). He escalated more. We had to stop because he was squirming way too much to guarantee he wouldn't get hurt in the process. We tried some deep pressure rubbing on his back. He responded with a head-butt. That's when I took a quick break, outside of the house.

When I got back inside, Dan had T back in his room, but T was still not calmed. He was hitting and kicking Dan, then turned on me again. At this point, I don't even remember what the breaking point was to get back to regulating, but it happened almost as quickly as everything started.

I was telling someone else about this and we both agree it was not a temper tantrum. It MAY have begun that way, but then he really didn't know how to regulate. Taking his delays into account, even most typical 3 to 4 yr olds who didn't get what they wanted would have been able to get back into the swing of things much faster than T. did.

We'll see where this week takes us on Meltdown Lane.

Mr. Sensory Integration dresses for Wisconsin Weather

Two days ago, it was about 45 degrees when Thomas had to get ready for school. The prediction was 85 high temp for the day. I suggested Thomas wear a "light jacket" in the morning because "it's a little cool outside." Not cold. Cool. I gave him two options for jackets. He didn't want either one. He NEEDED to wear the winter jacket because "that goes with the hat and mittens."

We didn't make any fuss about it, but sure got some giggles. He let me take the picture on the premise that it's for a friend of ours.

You also have to understand that 1-1/2 years ago, it was truly a battle to get Thomas to wear a hat and gloves without being met by a meltdown. He also wouldn't have been able to dress himself (though very slow...but he's doing it!!!).

So, a hat, gloves, jacket are just fine in late May. It actually makes me very happy! Pretty sad that it doesn't take much for that.

Okay, so this has absolutely nothing to do with FASD, but this is just way too cool to ignore. I love love love love The Sound of Music, so I'm a little biased to this.

http://www.youtube.com/watch?v=WkBepgH00GM

Thomas talks to Katie

Our good friend, Katie, is having a difficult time right now, so we called her and let Thomas talk with her. He talked with her for an hour on Saturday. Both enjoyed it alot. They talked again last night, and it was just hysterical to see/hear his end of the conversation.

He had the phone and said "I'll be right back. I'm going to let Niijii (dog) talk with you for a minute." Then, he'd put the phone on the dog and T said in a deep raspy voice "Thomas wants you to come to his house." He then took the phone and asked "Katie, what did Niijji say to you?" They'd talk for a bit. Then he'd do the same with the cat and say "I like it when Thomas pets me nice."

It was all cute, until the all-American typical six year old boy said through Niijii, "Tell Thomas to stop sniffing my butt." Thomas again asked Katie what Niijii said, she repeated it and Thomas responded "Well, he smells so good. We took him to the doggy hotel to get the ticks off and she washed him."

Tonight, we call Jeff (Katie's husband).

Mr. Sensory Integration hears a car horn honk

Yesterday we took Thomas to one of his favorite parks. He was playing in the wood chips, when suddenly there was a loud HONKKKKKKKKKKKKKKK. I happened to be snapping away with the camera and go this...captures the moment.

LOTS of us will react the same. But, most of us can get back on track to what we were doing before that. It took Thomas a good half hour to get back on track. In the meantime, kids and parents are wondering what the big deal was, why is he still covering his ears? Why is he clinging to mom? How come he started tossing the wood chips randomly?

He did great after that half hour. I'm grateful that it didn't last longer for him, AND that it didn't escalate to the point of needing to leave the playground. It really is a favorite place for him.

He was able to enjoy the playground again. And other kids were able to enjoy him being there.

The facts of life, in the eyes of a 6 year old

We have several blue "Mr. Crabs" (I have no clue what they are called) in our acquarium. One has eggs attached right now, and it's very noticeable. Thomas struck up quite the conversation about this. By the end of it he was calling Mr. Crabs "mommy Mr. crabs." He also asked the man of the house "Can boys have babies?" Response was an emphatic "ummmmmmm. um. ummm. No." His next question of course, was "why not?" Answer "because they won't FIT in boy tummies." So, now women have bigger tummies. ugh. I added a tiny bit about not every lady can have a baby grow in their tummy....figuring that may open the door to talk about that "other" discussion we'll have eventually. His only response to that was "Are mommy Mr. Crabs nice?" Yes. "What do they do?" They swim, they eat, they hide from the turtle, and they have babies. "What do they eat?"

Right over his 6 year old head. I've been told some people with an FASD tend to not hear/understand the first and last part of a sentence.

Then there's the boogeyman thing. He actually woke us up at about 5am to ask "Is the boogeyman nice?" No. "What do they do?" Lots more to that one, but suffice it to say we're making a batch of boogeyman repellant today...2 parts hydrogen. 1 part oxygen.

On Monday, four moms went to Walmart to find fabric to make dance outfits. Four women in the same vehicle fora 60 mile round trip, is bound to bring up lots of conversation. I really enjoyed it, since I didn't know two of them beyond seeing them from a distance. The way TO Walmart was everyone telling funny stories about their kids.

The way back got a bit more serious when asked me if we knew why Thomas was delayed. I hadn't mentioned FASD to them before that point. GREAT opportunity, especially since these are young moms, still planning/able to have more children. One had never heard for FASD. Her very sincere question was "how do you catch it?" When I explained it a little, she said "Thank God I stopped drinking about a year before I got pregnant." It was good to have a casual conversation about it. There was alot more said from all of us, but everyone agreed something has to be done.

A Prevention/Awareness event

Today I did a prevention and awareness event at our clinic. All things considered, I think it went well. It was part of the WIC certification day, so I was at a table in the conference room where women would make their last stop. Ten or eleven people stopped in and picked up brochures. A few agreed to watch some very short video clips (less than 3 minutes for most of them). It's kind of hard to stay much longer than that when you have the kids with you.

We also had lunch for the clinic staff, which included pizza and a 30 minute movie that was VERY culturally appropriate. We had some great discussion afterwards and some good ideas about getting the message out to the young teens. A dozen people used their own time to do this, so that says a lot to me. At least one of them talked about their lunch hour with some of their co-workers. THAT is what I want to see. People talking about it. Remove some of the stigma by having open conversations about FASD.

The last 2 days without Tues/Wed PCW, and more

Don't tell the home health agency, but we managed to do okay the last two days without a PCW present. WE, being all three of us. Because the weather cooperated yesterday, we were able to just stay outside and keep busy.

Since the PCW didn't come over to say goodbye to Thomas like we requested (and was told it would happen), I told him yesterday that she won't be back. He gave a YES that really sounded odd, even from him. That was his reaction. End of story. I didn't tell him why; he doesn't need to know that. I'm concerned that he might be thinking he got his way. I honestly think the conflict between them was because she was consistent and didn't let him get away with much. He didn't like that. That's not to say he intentionally had meltdowns. I know those weren't intentional. It's not something he enjoyed.

And now, for a drum roll in honor of Thomas and his developmental milestones......
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he wore underpants all day at school each day so far this week. This morning was the first time I could convince him to wear them TO school instead of diapers. Of course, there had to be something "in it" for him, so when he gets home from school, there will be some sort of treat. I have no clue what it will be yet, but it motivated him. My motto is "Whatever works," bribe or not.

THE IEP meeting

Today's IEP meeting went well. Most of the "issues" will be addressed in late September, after Thomas has had a month to adjust to "the BIG school." We really can't know at this point what he'll need there. He WILL be on a "special bus" that is a full sized bus, about half full, and has 2 adults on it. He does fine on the Head Start bus, but that is just 4 - 6 year olds. The bus next year is K-12, all on the same bus. No adult other than the bus driver.

The surprise at the meeting came when I said that "Before the beginning of the school year, we want all staff who will come in contact with Thomas on a regular basis to receive training in FASDs. We are willing to provide the training." The SpEd director had a look on her face that I couldn't quite tell what she was thinking. She seemed hesitant. I started saying that I'll be a certified FASD Educator by that point (I thought that might give it more umph). She said "I think we can do this for all the staff for part of the inservice before school starts. How can anyone else access you?" I told her just ask. That's when she asked me to do the same at the other school district she services! YAY! So her unreadable look was thinking about how to get the training to as many as possible!

Riding on the shoulder of the FASD Lane

The shoulder of the road is a "safety net" of sorts for drivers. It's that safe area in between a safe lane and ending up in the ditch. It gives you a quick chance to get BACK in the safe lane. We've realized we're getting a bit too close to the ditch sometimes and need some help. Of course, husband realizes it about a year after I even suggested it, so I waited patiently for him to come around, because I really believe this is something we have be on the same page and same paragraph about.

Things are escalating more often and with more intensity. We're having a hard time figuring out how to slow down or "catch" a meltdown before it's too late. We also suck at structure, which T needs. Order in the house? That won't happen until we get some serious help in moving things that we physically are unable to do, along with a kick in the pants from someone to remind us of WHY we have to make some changes.

One change we ARE making now is getting Thomas out in the community more. We've realized we've been sheltering him from the "what ifs" and not allowing him room for some successes, small as they might be. Of course we won't set him up when we know it would be too much for him. If we are going to set him up, we need to set him up for successes!

And one more thing....I never thought we would find a place that is more chaotic and sensory overload than Chuck E Cheeses (which Thomas actually enjoys because he GETS something in the end with those tickets). While in Madison, we went to THIS PLACE for supper. When I looked at the website and decided we'd give it a try, I must have missed the part about flying figures. Batman and Spiderman, along with a lot of other characters were in motion, near the ceiling. WAY to stimulating when you can't TOUCH them. The food was good and service was good too. The paper mache' figures were cool to look at, if you're not sensory sensitive. We will NOT be going back to that place.

2 different conferences, very much alike

Last night we returned from 2 conferences going on in Madison. The first was Circles of Life. Dan and I got different things out of the conference. Like most conferences, the majority of the sessions were good to great. Seeing Katie Beckett in person was inspiring. Connecting with parents who share the hopes, dreams, and struggles with a child with special needs was very helpful for me. It was a bit ironic that Friday morning we had to deal with a meltdown, just before attending the session called "Challenging Behaviors." It didn't surprise us that session was on 'overflow' and they had to bring in extra chairs and tables. The BEST part of all this is that respite was provided. It was about 2 kids to 1 worker. We picked up Thomas for lunch, and had to take his meds to him, so we got a chance to "check up" on him.

From that conference, we drove to the National FASD Conference. We had two hours to drive from one side of Madison to the other, AND get me settled in to do a preentation. I had agreed to be a co-presenter for a session in the Family track, which was an overview of FASD. When I arrived there, I found out that one of the other two people would not able to able to present (health reasons). Fortunately the 3rd person prepared well enough for the entire session. Because of that session, I'm now officially half-way on my way to being a Certified FASD Educator! woot woot

Again, it was very powerful to meet up with other parents who live with FASD every day, right along with the person with the diagnosis. The conference included a special session time for parents to connect, without anyone "looking in" to find out what challenges families. It was the families telling each other and helping come up with suggestions, or at least be supportive.

One thing really struck me at the FASD conference. A gentleman asked the audience if they ever noticed how parents will introduce themselves if they are on a parent panel at a conference. No place but an FASD conference has he hear people say "I'm an adoptive parent of a child prenatally effected by alcohol." How true. Would someone who adopted a child with autism or down's syndrome clarify that their child is adopted? Probably not. Why do we still feel the stigma? If adoptive parents feel the stigma, one can only imagine what the woman who gave life to the child effected might feel.

So, now we are back to reality. Some of the realities:
We have an IEP meeting tomorrow afternoon to talk about Kindergarten.
We have one less personal care worker that we need to do something about.
Dan has finally realized we need some help with how we deal with Thomas's ever changing behaviors. (The COL conference was good in that way). I'll be calling someone tomorrow about that.

Of course, there's that never ending pile of laudry that multiples faster than rabbits too.