One more thing

My husband and I both thought we might have heard B. say "Mommy" today in the car. Which would be a first!

Articulation sneaking up on you

Sometime between last Christmas and this Christmas, B. can sing songs with perfectly recognizable words. It struck me when I heard "Santa Claus is Coming to Town"' turned around looking for G., and found myself looking at B. How could that clear little voice be coming out of B? When did this happen? They both are so musical, and it is such a joy. My husband, who has a harder time dealing with the twins' autism, has been takinf B. to a guitar store to try out instruments. There is an employee who also has two boys with autism, and apparently he's very understanding. My husband looks so happy when they come home from those outings. He's planning to get the boys a drum set for Christmas. I'm very glad they've found this common ground. Not so excited about the drum set, but I'll live with it. Well, this started out being about articulation, but it's all related. Music therapy, for kids and grown-ups.

A friend of mine moved from here to Connecticut for the autism services.  She had refused to send her daughter to our district and homeschooled her.

In CT,. her daughter has a full time aide trained in ABA, an IPad with ProLoQuo2Go on it, and is in inclusion 12 hours a week.  I may have to stop reading her emails!!

I am trying to be mature about this but I feel jealous!

Let's Get Physical

Tomorrow will be our second Saturday of Special Olympics bowling.  I think what I like most about it is that it's purely for the kids.  No discussion of treatment, cure, progress and so forth.  Just fun.

If anyone is actually reading this blog (other than my sisters, who only comment in emails... which is fine, by the way), I have to recommend TeachTown.

It's Discrete Trial Training, so limited in that way. On the other hand, if you have a child who is hard to motivate to do work, it could be just the thing. G. is working up a storm, although he still wishes it were YouTube.

Parent/Teacher conference

Well, I met with the twins' teacher this morning.  It may or may not have been smart to have had two big cups of coffee and a Sudafed before driving to the school.  That's not my recipe for getting high, it's just my normal coffee intake plus a little allergy problem I'm having.  I only take half a dose of Sudafed because it makes me feel as if I'm hovering a few feet off the ground.

Anyway, I brought about eight of the file folder games I've been talking about, our IPad and a box of Oreos, in case the teacher wanted me to demonstrate what either twin can do in the presence of the right sandwich cookie.  Their teacher greeted me and mentioned in the first ten minutes that she has ADHD and has been having hot flashes.  Between the two of us it was a pretty hyper and disjointed conversation.

It started out with her saying how surprised they were when one morning G. did an alphabet puzzle all by himself.  What the what?  Here we go again, I thought.  So I pulled out my file folders and gave her the Oreos, and now I'm just hoping that G.  does me proud and actually shows some of what he can do.

There was more chit-chat, but the gist of the meeting was that the twins can do more than they'll let on, and we're going to work together to get them to do some of it at school.  I know this teacher means well and is very motivated, so I'm hoping for the best.

Now if I can just figure out the secret of getting B. to show what he really knows.  One thing I'm trying (only with G. so far because he can use the computer mouse ):
"Teach Town Basics"


It's not cheap, but the boy can do it.  If I got a touchscreen, I think B. could, too.

Autism Breakthrough in 3 Easy Steps

My husband and I are always joking that we could get rich by developing the M****** (our last name here) Protocol for autism.  Doesn't really matter what it would be, but if some fraction of the desperate autism parents out there got on board, we'd be set for life.  Our original plan had to do with watching the Wiggles and eating Tyson Chicken Nuggets and Leggo brand chocolate chip waffles.

We never went through with it, but just lately I've been watching G and thinking maybe we should re-consider.  If you've ever dabbled in all the bio-medical stuff, anytime there's a change in your child's development you can't help thinking, "Is he eating differently?, etc.  Just lately G. has done so many things for me that he wouldn't have done six months ago.  In the pediatricians' waiting room I showed him how to play "Twinkle, Twinkle" on a music app.   He took the IPad from me and played it himself.  Then he tried to play Happy Birthday, and got a lot of the notes right.  He has also been doing all the things I mentioned in the last post.

So here are the possible  interventions:

• Huge numbers of Kroger brand mini-pancakes. Substitution of healthier-seeming, name-brand mini pancakes is unacceptable.

• Excessive exposure to YouTube -- in particular a medley of The Rose, Happy Birthday and We are the World.  Also endless viewings of grammar videos made by English as a Second Language websites (www.mes-english.com).
• File Folder Games-- G. will do any task that I present to him as matching Velcroed things in a file folder -- numbers, words, pictures of emotions, categories of objects.  This could be a passing phase, in which case I'll be stuck with a whole bunch of file folders filled with clip art images and velcro.

In all seriousness, I think a lot of the changes can be chalked up to the IPad.  Being able to operate the IPad with a touchscreen has changed the world for the twins.  I don't know if it's all the fine-motor practice, or an increase in confidence, but now they are trying to use the computer mouse and doing things with apps they could never have done before.  

Click Here for the YouTube video with magical healing properties

G. was home with pink eye today, and I got him to do so much work!  Despite liking the new teacher initially, we are back to the old problem of no one realizing a fraction of what the twins, especially G., can do.

I had lunch with the twins, and the aide was flabberghasted that they could use complete sentences to make requests.

Time to send in the old DVD of G. working with me when he was four, saying words, letters, letter sounds and so on.  It is starting to seem ridiculous.  There he is with his old orange sippy cup, doing all sorts of stuff he won't do for them in first grade.

I am on a secret mission. Posting my plan here does not stop it from being secret. One advantage to having so few blog readers.  The plan is to make videos of the twins doing tons of work.  Today G. matched shape names to shapes, number words to numerals, the names of animals to pictures and more.  He navigated around the PBS Kids website with the mouse, and talked me into watching a YouTube video on present continuous verbs.

My mission is still a little vague.  Once I make all the movies proving that the twins can speak, use the IPad, etc., what will I do next?  We will still be living in Texas, in a school district that hasn't even bought any IPads yet.  Well, I'll start on step one, and maybe the next part of the plan will become clear to me.  I'll get a lot of satisfaction out of it, in any case.

Artsy paint splotches or stubborn autism-related stain?

I'm still deciding on this new template background. Sometimes it looks too much like a few surfaces in my house that just won't come clean, even with the "Magic Eraser" sponge. Hmmmm.

More good news

Today I dropped by the school (unannounced) to have lunch with the boys. When I stopped by the twins' room, their teacher said, "Look at this" and pointed to G. He was sitting at a study carrell, working all on his own. No aide, no ABA therapist holding a tiny piece of Oreo. He was just working for the sake of working!

Also, they said that during calendar time, G. had suddenly said, "Break time" (something they have been having the twins request with a voice output device). It was the first time he'd said it, so they let him take a break. I bet he'll learn that skill pretty quickly!

There are a few issues with ratios and also communication between school and home, but G's working without needing a reward is wiping that out of my mind for the moment.

Another good teacher

It may be time to exhale, relax, and stop waking up at 4 AM feeling panicky. We have a new teacher again this year, but I think she's another good one. The twins actually seem happier in the afternoons this year, which is an encouraging sign. Last year G. used to hide in his bed and have to be coaxed out.

The twins are back at their home campus, which makes big brother J. extremely proud. I also get to hear snippets of their day from him. For example, last week the Cookie Dough Fundraiser assembly was briefly halted so G. could leave. Apparently he kept getting louder and louder. I think it must have been one of those assemblies where they try to whip up a lot of enthusiasm by yelling into a microphone.

This weekend at the pool, B. kept yelling out something that sounded like, " COOKIE DOUGH! Hey, what??" over and over. Our favorite lifeguard, who is fascinated by the twins, is sure that B. is ready to get out there and sell.

And, luckily, despite the yelling, and having to stop school assemblies, J. still says he is "super proud" to have the twins at his school.

Found the (so far) perfect pajamas:

www.littlekeepersleeper.com

It is such a simple product, but it has really improved my quality of life a LOT!

Right now, everything is about toilet training, and I do not feel like blogging about it.

Although if anyone can recommend pajamas which absolutely cannot be stripped off, please let me know.

So far, so good

The ABA-less summer is proceeding fine. So far we are all about toilet-training and going to the pool. Unfortunately combining those two things is not necessarily so great. I think of taking the twins to the pool as "swim diaper roulette". We haven't been banned from any pools, but that may be because of lifeguard cluelessness. Enough on that topic.

J. is having a mixed summer-- the days are going okay, but in the evening he is falling back into some old behavior issues. I think he keeps a lot of frustration about life with the twins inside, and when it's too much, he unleashes it toward my husband and me. In the daytime he is usual creative and funny self.

One night lately I managed to sneak out and meet another local autism mom. We talked so late they closed the restaurant before we'd realized it (we were on the patio). She is trying hard to move to the Northeast and says she refuses to send her daughter to Texas schools. I will miss her if they move, but I understand wanting to get somewhere with more services. I've actually been avoiding support groups lately, but a support group of two was probably what we had both been needing.

To ABA or not to ABA?

In the last few months before we quit ABA, our insurance suddenly deigned to cover a fraction of it. Now the therapy center is asking us if we'd like to come back for some hours this summer. Ahhh, the joy of deciding how much and what therapy to get!

To be honest, I haven't seen any big regressions since we quit ABA. Also, the twins qualified for 18 days of Extended Year Services (that's the most you can get, so I am happily surprised). Right now, there isn't even a little part of me that wants to take them back to the ABA center although I do miss the therapists. Am I denying them something that might help them? My gut says no, but who knows?

The alternative summer plan:
They will be getting many, many hours of aquatic therapy (aka floating around in the neighborhood pool with Mom). Also ample opportunity to use technical interfaces (IPad), and various community outings (Target, Walmart, Kroger). They will have access to an embarrassingly large library of children's books (my shopping weakness) and opportunities for play in inclusive groups (the neighbors' children and their big brother). We will be working on trying new foods, using the toilet (God willing) and staying clothed.

Even to myself I sound defensive, but we'll see how it goes.

Keys to the Universe, a la Susan Senator

In homage to Susan Senator's occasional lists of what really makes her happy, here are some of my keys to the universe:

1. a planned trip to see my parents, my sisters, my nephew and my dog-nephews

2. newly-discovered Chai tea bags

3. watching 30 Rock DVD's with my husband after all the boys are in bed

4. watching Dancing with the Stars with my oldest son

5. spring rolls from Pho 21

6. painting the bathroom with the radio cranked up

7. walking on the abandoned golf course in our neighborhood

8. going swimming with B. and watching him teach himself to swim

9. sitting out on the deck after dark while G. marches around singing his Christmas song medley

That is a very satisfying exercise. It's a good antidote to compulsively going over my worries in my head! I am going to make these lists more often.

B gets lost...and how to trust that it won't happen again?

This Monday we went on a field trip to the Houston Zoo. It was a beautiful day, and we had a great time (although the twins aren't at the point of being very interested in the actual animals yet).

At the very end, in a huge crowd of Houston schoolchildren waiting for buses, a paraprofessional spaced out, and Brendan disappeared. I had G., and I walked up to the group of aides, and asked, "Where's B.?" They hadn't noticed he wasn't there. Next came fifteen minutes of running around like a mad woman, asking the zoo officials to close the zoo gates, and saying to random people, "If you see an autistic-looking boy in a blue shirt, grab him". The teacher had stayed back at the school, so I had to take charge of the situation.

Despite all these years of private therapy, public education, etc., the twins have no sense of danger, and no sense of the need to stay with a group. They might respond to their names in a quiet setting, but definitely not outdoors in a crowd. Luckily, a para found him standing in the gift shop. We still don't know exactly how it happened--he was sitting in a wagon, and the para thought he was buckled in.

Today we are going on another field trip, to a boardwalk, which is right next to Galveston Bay. I almost stayed home with both of them, but I can't keep them home from everything. Letting my guys go off to school, on trips, etc. requires so much trust of people I don't really know very well. I don't know how to balance worry/caution with trust. It's written into both boys' IEP's that they will run off, and I'm trying to think of other precautions we could take (including getting B. a service dog). With J., their big brother, I don't have any of these concerns. I need to find a way of trusting in aides, teachers and fate more than I do right now.

On the other hand...

J. had a different friend over the other day, and i was appalled! B. was sitting in a chair on the deck, looking around at the trees, as he often does. I overheard our neighbor's son saying, "He's so boring!" J. just laughed nervously. Then the little boy said, "Make him scream again!" I think he was talking about the happy shouts that B. tends to make when he's jumping around the house. J. was at a loss and just looked at me. I was so disappointed in this boy's attitude, but I tried to think to myself that he's nervous around B., and doesn't understand what's going on. So I did my best to explain autism in a few sentences, but I couldn't tell if it made much impression. I was so annoyed by the whole interaction. I don't know the boy's parents well, but I know the dad is always very kind toward the twins, and invited us to join a camping group he's in. I think I'll ask the dad to talk to his son about it.

Afterward I talked with J., and said there will always be some kids who don't know much about autism, and if he wants, I'll explain things to any of his friends. J. seemed much less concerned about it than I was. Looking back, I'm realizing that the rest of J's friends are amazingly accepting about the twins. Our next door neighbors have a daughter with developmental delays, so between our two houses there's a lot of happy shouting, partially-clad escape attempts, and toilet-training mayhem. To live on our street is to have at least some understanding of six year olds with special needs!

I think it was good to have a wake up call that there will be rude questions and clueless comments from kids J's age, and I need to think up some strategies to deal with them. To me the twins are so adorable, I can't imagine anyone saying anything mean about them, but it is going to happen.

Thanks for noticing

J., my oldest son, had a friend sleep over last night. His friend is an only child and is always surprised by the reality of our household. With the candor of a seven-year-old, he has suggested a few times that I clean up the house more often. He also reports the twins' escapades to me in a panick=y voice at frequent intervals. It's usually along the lines of "B. is naked!", "G. is on the kitchen counter!" or "B. is jumping on the IPad!". Actually those are all actual quotes from last night.

This morning, while B. and my husband were still sleeping, I took J, G and J's friend out to the kolache and donut shop. We got our treats and sat at a table to eat. After we'd been there a while, J's friend said, "Hey, Greg is doing really well!"

That warmed my heart so much. For one thing, J's friend is getting some perspective on the whole situation. And, he was right, G. was doing really well.

Potty Training Update

Well, apparently I am backing off on the potty training once again. Although we were focusing on G., it was B. who made some improvement. G. just became stressed, aggressive, and started saying, "Sleep? Sleep?" in the middle of the afternoon, hoping I'd put a pull-up on him and put him to bed.

I know that some day, G will use the bathroom. He can wait hours and hours, he can ask for what he needs and he can go when he decides he's ready. We just need to change the location of where he likes to go or actually, HE needs to change the location of where he likes to go.

On a related note, a Hoover SteamVac should be arriving at our house in 3 to 5 business days, and boy is it going to be busy!

Galveston

Since our first family beach trip last year, we've resolved to go down more often, especially in the off times. No one in our family likes a big crowd, but we all love the surf and an empty-as-possible beach. So, this past Saturday we packed up and headed back down to Galveston.

If you are used to New England beaches, it's a bit of an adjustment. To me it doesn't seem as clean, and there's no zoning, so the development on Galveston isn't exactly quaint or charming. On the other hand, you find a nice cross-section of the local poplulation on the beach, with a fun, multi-lingual, multi-cultural feel.

It was very grey and very windy. The boys loved the waves, which seemed a lot bigger than usual. Afterwards we went out to Mooyah Burger, which everybody liked or tolerated really well. When we go out and have such a normal family day, it's a really great feeling.

Church for All!

Oh, I'm so excited! I'm talking to some other people from my church about having a special needs class next year, at least one or two times a month. We've got some boys/young men with moderate autism, a young man with Angelman Syndrome and another young man with Down Syndrome who don't really have anywhere to go during church. They end up in the infant room, which is okay, but not really the best for any of them.

We are thinking about music, sensory activities, crafts (not my idea, but okay), bubbles and so forth.

Inclusion is wonderful, some of the time, but sometimes the opposite of inclusion is even better (well, not exclusion, but you know what I mean).

Potty training, and I mean it this time!

As the twins begin to out-grow any standard pull-ups except the overnight huge ones, the time has come to get serious. We are trying an underwear-only, use the potty every thirty minutes approach. Well, not every thirty minutes for both of them or I'd be totally nuts by now. But we are really doing it with G., who up til now has specialized in waiting seventeen hours to go and then flooding himself and anyone nearby.

And, despite his complete lack of interest, an even smellier house, and tons and tons of carpet cleaner and wet towels, Greg is occasionally going in the potty! He would prefer to hide in a closet, or wait til bedtime when he finally gets a pull-up, but for the first time in his life he is sometimes sitting down on the toilet and actually going.

It's only been two weeks or so, and I foresee many months of this, but it is progress and I am so happy.

Functioning -- high and low and in-between

Overall, I think my mood is pretty good these days. But one thing can still sucker-punch me... other autistic kids seem to progress so fast! I hear people refer to their child as low-functioning or autistic or delayed, and they can do so much more than the twins. This is not what it's cool to blog about. I realize, but I don't have too many readers, so the pressure is off, to some extent.

One thing that works for this mood is to go the blogs of parents with children with much more serious medical or cognitive disabilities. I feel strange saying that, but it is a sure way to help me appreciate the positives in my life. Another thing that really helps is looking at a picture of Greg trying a hamburger.

Gardening

Now that I have all three boys in school full-time (pause here for a sniffle), I find myself trying to re-claim my old self or possibly discover some aspects of a new self. I feel like I'm trying to re-group. I've been donating a LOT of stuff to Goodwill, which makes me very happy. I've also been doing some planting. In my windowsill I have basil, thyme, lavender and rosemary. I've bought some seeds to try growing micro-greens. Outside I've got Texas Sage and phlox of some kind.

I haven't come up with any plan for how to earn money while still being home to get the boys off their buses. I haven't done the "Determination of Mental Retardation" appointment which might get us some services. I haven't made any nifty DVD's for video modeling.

Right now I'm getting rid of old stuff and growing a few new plants and watching old episodes of Community, and that is going to have to do for the time being! Not a bad way to spend some time.

PS That's not actually my Texas sage in the photo. That's what my Texas Sage dreams of being one day far in the future.

At the Movies!

I'm just back from a field trip to the movie theater to watch Tangled with the twins' class (and the two other self-contained classes from their school). There is something freeing about seeing a movie with only special needs kids and their teachers in the theater. At times it reminded me of the old midnight showings of "The Rocky Horror Picture Show"-- a lot of audience participation and talking back to the characters on the screen. When Rapunzel had Flynn locked in a wardrobe, one boy kept yelling, "Open the door!" Nobody minded, and luckily she did finally open the door.

I'm happy and surprised that the twins made it through the whole thing. The last twenty minutes or so Greg started asking, "Down? Down? Down?", but dealt with it when we didn't take him out. Then he limited himself to an occasional call of "Wait, Elmo!" for the rest of the movie. B. drank three sodas --his, G's and mine-- and then actually waited through the whole movie til we got to the restroom. More than I could have done, that's for sure. Maybe this will inspire me to try more movies with them although I'm not ready to try it on my own yet (if ever).

Just putting this in here to remind myself of my pledge to take more pictures. Not that this idea will go over well with the twins...


Then there are some people who don't mind at all!

Brothers acting like brothers!

I just wrote a depressing post about how G. used to use language in a more social way back when he was two. But I decided not to hit "publish". Now he comes up to me and puts his hands on my cheeks, or presses his nose into my face and inhales lovingly. So what's to complain about really?

Also, on the big news front, B. has decided that his big brother is funny. If J. hops into B's bed, or gives him a bear hug, or better yet, lies down on top of him, B. gets a fit of the giggles. It doesn't always work, but when it does, it is such a joy to see! They'll wrestle around and laugh, until it usually ends with B. getting over-excited and grabbing his brother by the throat. That doesn't sound so great, but it's meant in a loving way, I"m pretty sure.

It's so nice that things like this can come up and surprise you, even if you have to wait til they turn six. I think of myself back in my desperate Floortime days--trying so hard to get them to do pretend play or interact with each other. So many things just have to happen in their own time. As frustrating as that sometimes is!

Even keel

B. seems to be doing okay with this kindergarten thing. He doesn't like the cafeteria, but who would? I've been picking him up early, to help him ease in. Right now he's talking in what sounds like paragraphs of babble or some language I don't know. I may be imagining it, but I feel as if he's talking to himself more since we quit ABA.

Every once in a while I feel a jolt of surprise when I realize both the twins are in the kind of class I used to teach, with a very low ratio and goals like putting their lunch boxes away (along with some loftier things, too.) Most of the time it seems normal, and I'm so, so glad that this year we have a teacher who says things like, "They are both so smart, we just have to learn how to work with them". I'll just let last year's teacher fade into a distant memory!

My mom is home, and continuing to improve. So right now things are good, although I do miss seeing as much of the twins as I used to.

Starting Kindergarten

Okay, Mommy needs a drink, or a massage, or a Valium, or something! I'm taking deep breaths, going to my happy place, etc. This morning I dropped B. off at his self-contained kindergarten. It's the same class G. is in, so it should go fine. When I left, he was sitting in the general ed. kindergarten for calendar time. He was singing some Christmas song in a low, relatively quiet voice. He tried to stretch out on the carpet and ended up sitting in an aide's lap. I guess now he'll start coming home smelling strongly of perfume, as Greg always does.

I actually feel better about it than I thought I would. He walked into the building with a huge smile on his face. I'm picking him up early and hoping he's still smiling or at least not crying. So far, this is definitely harder for me than for him. Thank God for good teachers and aides.