Extra Sensory Days

 Yesterday and today, both my son and I have experienced what I think of as extra sensory days. For myself, this means I have no tolerance for interruptions of any kind and go through the day (with things constantly going wrong) feeling hangry despite not being hungry. I fix one thing and two more things break. I am thirsty and water does not help. I find a moment of calm and James comes out with questions about King Jong-Un, 9/11, WW I. and how to remove a child-proof cap from his meds. Also, to tell me he did not try texting people at 4AM and why is he being blocked on his phone?  Ahhhhhhh!

It started when I had to take James with me to my morning eye appointment, because school's out, this was the earliest I could schedule, and my eye sight's been wonky, even with newer reading glasses. James trailed me in, not very happy to be rousted out of been on his summer vacation for this. He kept sidling down hallways when he should stay put, stopping in said hallways and blocking others when we moved to the next exam room, constant verbal stims that included some swear words, and finally backed out of the room in the middle of me having a light in my eye and having to remain still. Mama Spidey-sense is a Thing. I felt like a drill sergeant by the appointment's end.

The staff, were all wonderful and understanding. No one was cranky or raised their voice. They were calm and extremely kind. I cannot say enough good about them. Especially when James informed me, back in the parking lot, that he left his drink cup in the last exam room. Grrrrrrr. No worries - it was up at the nurses' station when I went back and everyone was upbeat about its being reunited with its owner.

Back at home, the cats were punks and tested gravity with a vengeance and one escaped to the great outdoors, grounding us until he returned. Buh-bye plans to meet up with friends at the bowling alley. The fix on the van's a/c broke and then required a more expen$ive repair. The replacement part turned out to be faulty .... Buh-bye planned road trip and weekend gathering with friends. 

James has been extra bothered by noises I can barely hear and routinely tune out (barking dogs. kids on bikes, and leaf blower blocks and blocks away). It's left him in the yellow zone and more prone to swearing. I still have to semi-barricade the side door to dissuade him from going into the neighbour's yard. I feel it works better than me constantly verbally telling him to leave the door alone.

We are hunkering down at home. Thankful it's ours and quiet today. Thankful for the repaired a/c in our van and a very honest and trustworthy mechanic. Thankful for my mom, who picked us up from the mechanic's one day and brought us back the next. Thankful for understanding medical staff. Now I think the only thing we might need later is ice cream ...

Summer Reading: Senior Year

 It's summer. I love reading. I loved getting my kids into our library's summer reading programs. James prefers to be read to and only certain books. Like many activity, he prefers to not do this with me any more, but will do so with others.

Our beloved, local independent book store is having to close. I chose two books for James, and he seems to like including them with his ABA sessions (in addition to the eternal Matilda, by Roald Dahl).

Bad Kitty Gets A Bath

HiLo - The Great Big Boom

As someone who started a voracious reading habit at age 7, it's hard to have kids who are not the same. That will not stop me from offering it, and trying to engage them in the fun that can be had. Reading is reading, no matter the level.

Pause and Reflect

Over the past month, the kids and I, especially James, have had to deal with a lot of new programs (doctors, summer school programs, etc.). It's been bumpy, but I've been here before. This has me thinking of what I pull from sometimes to cope with autism, learning issues, and behaviour/emotional problems.

I have a creative, visual style. Words are great, but there are many ways to communicate. I used to draw my feelings, stories, moods. I sang. I danced. I painted. I participated in group art classes and learned that no two people see the world in the same way, which is truly amazing.

I traveled. While in high school, college, and after. I learned the value of places that are public and offer services. I learned to be resourceful and friendly, while being alert to my surroundings. I found that the little things can matter more that the big tourism totems. I learned the value of listening. I learned how to change plans and change with them - because sometimes it ends up being better. And if not, there's always another change coming, and that one could be a really nice one.

I played sports. I learned to take being the only girl in a class of boys for swimming, skiing, playing soccer or football. Cross country taught me how to put my head down and focus on putting one step in front of the other to get through a rough patch. Swimming, yoga, and dance taught me how to breathe and let tension go. Just keep moving forward.

I have good friends, who let me vent, get weepy, and do a neat trick of soothing, humourous support of "yeah, this is crazy - now get back out there, Girl!" I have a really, really great best friend who from way back when saw life with me as a chance to turn challenges into a kind of game.

My family. My parents loved my brother and me - to the moon and back. I have such good memories of trips, reading, music, meals, jokes, and holidays. I want to share these with my kids and have good memories built with them too. I want them to know the security of having relatives who love them, unconditionally.

I read a lot. It helps me imaging other points of view. I learn constantly. It takes me away when I am stuck, sad and frustrated. When I need to rest or visit an old friend, I pick up a paperback, laptop, or Kindle Fire and access to almost any time, anywhere.

This makes me thankful I've had the chance to acquire a base like this.

I'd love to talk with other parents some day, and hear them talk about what they pull from to deal with their lives.

Inclusion Benefits Us All

From the time we started to discuss James' transition from an SDC Preschool to Kindergarten, I pushed for Inclusion. The school was against it. I can understand why - James would need a one-on-one aide, which is expensive, in addition to speech, O/T, and Adaptive PE.

But this is my kids and I had been reading about the benefits of early intervention since James was a toddler. I had also seen him be successful and really benefit when he was with typically developing peers.

In preschool, I enrolled him in our town's Parks & Rec preschool summer camp sessions. He'd been able to receive his SHAPE services one year at a private preschool his a regular class. He participated in group Swim lessons and later youth summer camp morning sessions (again through our Parks & Rec).

For all these classes, I first met with the program directors, introduced myself and James, told them why I wanted to try this and explained what I thought some obstacles might be. It helped that James was shy, cute as a button, liked people, and never bit or hit others. We always agreed that if there were problems, we would stop. We never had to, thank goodness.

What did James get out of this? Well, it help make him less isolated. People fell in love with him. Kids got used to him. He learned from his peers, and began to model more typical behaviours. His speech improved! I like to think it helped him develop some confidence.

The farther along the process I've come, the more I've noticed the flip side of Inclusion - society gets to know and become comfortable - even a little bit more - with autism, special needs, and disabilities. They become part of their daily lives.

And the kids? Let me just quote this PBS Kids article:

• "Children develop a positive understanding of themselves and others.

"When children attend classes that reflect the similarities and differences of people in the real world, they learn to appreciate diversity. Respect and understanding grow when children of differing abilities and cultures play and learn together."
...
Given today's trend towards division and our government's attack on services and protections for those with disabilities, this is so important. We all need to remember and understand that we, us, humanity comes in all shapes, sizes, beliefs, and abilities.

Slamming Into Summer

So seventh grade ended up badly. That's all I will say in this post. Suffice to say that come August James will be in a new school and new school district. Meanwhile, I am getting used to Teen James, who is now almost 5' 10" at 13 & 5 months. Still a picky eater, so he is a handsome beanpole. He no longer calls out "Help me! HELP Me!!!!" when I wash his hair, but hygiene is still a struggle. He's learned to do his own laundry at a coin-op facility and is learning to rule the vacuum cleaner. As for myself... after dealing with all the schtuff I don't post about explicitly online for way too many years, I am tired.

Meanwhile, this happens to be THE Best summer school he has had in well over over four years. First the classes are at the high school campus, away from the noise and confusion of the previous location (six years running). Second, the teacher is giving them all life skills: cooking, taking the bus,  filling out a job application, and buying things in the store ... what is not to love? Third, he likes the older kids and the teacher.

I am wrangling summer reading on the side.

Still dealing with way too much spitting and use of tissue and toilet paper. Also clogging toilets when upset about things. Trying to get ABA going. Still working full time. Still dealing with end of life and major health issues in my family. Still calling and writing those nuts in DC about how I feel about our current status for education, healthcare, and immigration. And that damned tax bill.

Thank goodness for good friends, good books, and Marvel movies!

And so it goes.

Fallready

So summer went like *that* (finger snap) and it is Fall. Already.

I have my autismom calendar of events that confirm the paper Gregorian version in the kitchen:

• The back to school frustration of not enough communication from the school. 
• Feeling like the I need Homeland Security Clearance to get his schedule. 
• Beginning of school year IEP request and meeting, in which I try to understand where James will be physically at which time for each IEP service and what has been changed without telling me since the last IEP team meeting. 
• School pictures, once again in a red polo shirt. There no other Picture Day shirts. 
• Newsletters via a different delivery system. 
• Requests for money from the school. 
• First days of school missed due to cold AND flu that are "going around". 
• First homework makeup packet request and turn in. 
• First meltdown over reading assignment. 
• First sneaking of Crocs instead of sneakers to school. 
• Verbal stimming begins over a new teacher's name. 
• I try to commit a new aide's name to memory. 
• We set up new routines for homework and find The One Pencil that is tolerable for completing assignments. 
• Been called by the new school because the out sick message got lost. 
• Been called to leave work and pick him up because he was distraught. 
• Three evil bouts with constipation (and calls from the school or aide). 
• One email skirmish on why he was sent out for making noise / misunderstanding of what happened.

I have some more homework to do before meeting again with his team. After that, I intend to enjoy Fall with James and build up some fortitude before the return from Winter break sets off a new flurry of excitement.

Summer Reading Program 2016

Last week I signed James up for the Summer Reading Program at our wonderful library branch. This will be a good time to just sit together unplugged and read.

Our first two books:

The Big Honey Hunt (the Berenstain Bears - James' choice)

 

Horrible Harry Goes Cuckoo (my choice; I thought James would identify with the challenges of keeping still)

Oh boy!

Summer Reading Program 2015!

Regular school's out! We've hit 100 degrees and the days are long. It's summer! Our Sonoma County Library has another wonderful theme for summer reading: Every Hero Has a Story:

For the first time in years, I got both kids to sign up the actual first week of the program. Yay, progress!! James went up to the Resource Desk and asked to sign up. He filled out his entire card as directed by the librarian and filed it away on his own. I am celebrating this independent accomplishment with mental high fives and whooping and a "nice work!" out loud.

I picked out a book for James, and then he picked one out for himself:

Minnie and Moo Go to the Moon was my choice, because it was silly and a non-threatening gateway book to reading. James pulled out Brickbeard's Treasure and gleefully waved it around. On we read!

Summer Reading 2014: Catching Up

Summer school is over for the year already. No cherries but plenty of plums to deal with in the back yard during a drought. I made plum jam for the first time! James is part of our wonderful library's Summer Reading Program. I did sign him up and he has been doing the reading, I just haven't been going to update his card - gah!

We are lucky to have an in-home daycare person who loves books and reading. It's actually her regular job when school's in session. Over a break-in period of several days, she recommended activities and books to read. The grammar series by Brian P. Cleary is a hoot and fun to read. It rhymes like Dr. Seuss and had brilliant illustrations.

 

What sets them apart for me is how well they visually parse sentences. In "Hairy, Scary, Ordinary," all the adjectives are in colour and the rest of the sentence text is black. The Nouns pop out in a sort of Technicolour riot across the pages of "A Mink, A Fink, A Skating Rink."

 

The self-proclaimed Word Nerd also has a marvelous website, which like the books is filled with the energetic and engaging illustrations from Jenya Prosmitsky. The content on the site is rich, and includes games and tests.

We're off and reading!

Homework Duty Divided

One very nice dividend of James' Dad working closer to home: now we can share homework duty!

It was sweet to hear James read to his Dad from the big purple chair. He did a great job too. Then they did math card drills. I got a set each of addition and subtraction cards from the Dollar Store this summer. I have a feeling, though, that he prefers the cards his aide made for him.

His reading homework.

I used the microwave timer to make sure they hit the allotted minutes of work. I was in the kitchen, filling out forms. Ye gods and little fishes, such a lot of paperwork for parents!

I'll get my turn of reading and addition math flash cards at bedtime. Piece of cake.

Wistful Vista

We have a sleepover play date in progress for James' big sister. It seems to be a success, with much giggling, experiments with makeovers, and zany turns of speech. Not a whole lot of sleeping took place last night, but there was a protracted bedtime reading session that covered both Harry Potter and Junie B. Jones (Harry's 5th year at Hogwart's is not very helpful reading when battling homesickness, just so you know).

Pop quiz: name this playful duo.

Both girls have been cheerful to James, and he's enjoyed having another kid in the household mix. I do notice, though, that he has been watching the proceedings with a wistful eye. He would dearly love to have a play date of his own. Even though James is a friendly, playful kid, I have had a very hard time getting play dates for him. Many times, parents will say okay and then never return my calls. When I can connect with other parents, our busy schedules often compete, and play dates fizzle.

If James is with other kids, he gets very excited, but does not know what to do. His speech delays and difficulties makes it hard for his excited bursts of speech to be understood -- even I have to guess what he means at times. We are working on bike riding skills. He's got the turn-taking down, but getting him to focus and stay with a game is really difficult. Just a couple of weeks ago, his summer camp counselors tried to get him active in a game of line tag, but he just wanted to watch.

I've tried playing with James, to help model what playing with someone is like and see where he might get "stuck." He can be a lot of fun, especially with hand puppets, singing, and dancing. At one time he could play Red Light/Green Light for several minutes. We had less success with T-ball, badminton, and basketball/soccer. Play dates at a playground tend to work. I've read articles and talked with therapists -- helping our spectrum kids have successful play dates is a moving target.

Back to this weekend -- I had to make a quick trip to the store, and asked James if he wanted to come along; he did. On the way to the store, he asked if he could see his friend across town, and stop by his house. Knowing this family pretty well, I said okay, but I'd have to call first. Luckily, it all worked out, and we were welcome drop-in visitors. James got to see his friend, visit with people he liked, and play with their house full of kids. It was nice to see him taking turns on the trampoline and watch one kid encourage him through the rules of their made-up game. Then James started trying to sit on his head and ate a dandelion. My cue for us to go. Heavenly days!

Summer Reading - Done

School starts two weeks from now. Let me just say: "YIKES, that was fast!"

Last week James finished up his Summer Reading list. Seems like just the other day we were filling out that form to get him started! Below are the last two books we read together, and his list from the summer:

"Soon, Baboon, Soon," by David Horowitz:

Interesting cover; I think James liked his nose and the hi-hat.

End papers; I kind of wish they had kids' curtains in this pattern.

Love all that energy ... and then there's Mr. Sad Baboon ...

The artwork was engaging, with it's bright colours and fun with onomatopoeic text. James did love reading those words and identifying the instruments. The end left him smiling too. Not a lot of challenge, but it engaged him, and was still good practice reading.


"Thump, Quack, Moo - A whacky adventure," by Doreen Cronin and Betsy Lewin:

James zoomed in on the hammer; ever since he won that raffle, he's become interested in tools

This page made me a little nervous - James loves to cut things with scissors and almost no common sense.
Still, reading is reading, right?

Love this picture. It feels familiar -- James as the mischievous duck and Farmer Mom, mapping out plans that gang quack a-gley. Seriously, I am heck-bent on plotting for his success for James to live an independent life, and I need to remind myself that he has his own list of wants and ideas that should be consulted.

James lost interest in this book here and there. He did love all the animals using tools and liked to join in the chorus of "thump, quack, moo!" There is a nice little surprise fold-out page at the end. Fun for me but I had to try and explain it to James. National icons are a bit too abstract for his interest at this stage, shall we say. He did like the fold-out page.


So thanks, library -- we enjoyed your summer reading program yet again! James got to pick out a book of his very own as a prize for completing his reading. It was an easy reader chapter book and had a soccer ball on the cover. He grabbed it and I haven't seen it since he started rifling the pages in the car. If I find it, I'll try and post it later.

Here is his list -- including his own writing:

Love drawings like these!

Dreaming Big, all summer long!

Here's the list:

1. Lola Reads to Leo
2. The Duck Who Played Kazoo
3. Spot Can Count
4. We Were Tired of Living In A House
5. Cubes, Cones, Cylinders, and Spheres
6. Soon, Baboon, Soon
7. Thump, Quack, Moo

Summer Reading Rewards

On our visit to the library last week we updated our Reading Lists for the 2012 Summer Reading program. Because both kids earned their week 5 stickers, they received gift certificates for some frozen yogurt from a newly opened shop that was just across the Town Green. As it was about 90 degrees out, this was a welcome reward.

I had trouble keeping James focused on writing the titles on his list ...

... because the Blues Clues game (see top of image) suddenly became available.

Yodeling for yogurt.

Mmmmmmm, yoooooogurt. Vanilla, comme toujours.

Thank you, Windsor Library and Yogurt Farms, for making literature delicious and delightful for the next generation!

More Summer 2012 Reading

Here are three more books that James and I read together as part of his summer reading program. We had mixed successes with this group.

"We Were Tired of Living In a House:"

James liked this book, but lost interest 2/3 of the way through the story. He liked the pictures and the adventure, but was not keen on keeping track of what they carried and lost along the way. If the book had been shorter, he probably would have liked to reread this with me.


"Cubes, Cones, Cylinders, and Spheres:"

I thought this was going to be great, as James was obsessed with shapes last year and retains an interest in them. However, there were no words in the book, and while some photos were interesting, several were also like the one directly above. James was totally not interested in talking about finding 3-D shapes in real-life photos. I think words on a page would have anchored him more to this book. Having children play with the shapes would have been best. All in all, disappointing.


"Spot Can Count:"

James' pick to take home, and by far his favourite book of the week. The pictures were engaging and Spot counted barnyard animals up to 10. An easy-to-read, engaging book for James. He loved the fold-out portions of the book that revealed the number of animals for each page. Some were missing, which sadly can happen with well-liked board books.

This coming week we selected only two books. I think that's good, as I am rereading his SpongeBob books with him as well. For the eleventy-seventh time! We'll check back later to report on our last summer reading selections.

Magic Marker Monday: Library Art

We've caught up with our reading weeks for the library's summer reading program. Once we get about four weeks in, the prizes start happening. Prizes! As in, additional prize on top of having access to a free library in the first place, with Read-to-a-Dog programs, puppet shows, story times, and computer edutainment games.

James and his sister both received book bags, with crayons to colour a picture of their summer reading dreams on the outside. I loved them both, so here they are:

 James scribbled dutifully in each colour. When pressed to reveal his dream, he said "Reading to Leo." Neat!

Big Sister's was more intense:

"Is that a carrot?" I asked her.
"No mom, it's a bomb to sink the ships," my darling Tank Girl replied.

Bombs being dropped on whaling ships to stop the whale hunting. See the whale getting away while she cheers? I think we'll be checking out some Green Peace books next.

The librarian was impressed and called her bag design concept the most original she'd seen all summer. Then she helped her pick out books on gorillas, whales, and human evolution. I seriously Heart our local library and librarians.


For more great masterpieces or to share some of your own, visit
 5 Minutes for Special Needs for more Magic Marker Monday.

                               

2012 Summer Reading: What's Your Dream?

I signed both kids up for our library's Dream Big/Summer Reading program. James actually filled out his own form at the library, he was that excited. Later his sister did so at home, under maternal duress. I am having fun sharing the books. The theme is "Dream Big," which is awesome for summer reading, in my opinion.

James is now 7, and this makes the third year in a row that he's done the program. He is really into it this year! He loves me to read to him. He then insists on reading to me. He can write information on his reading log sheet and get his own stickers for books read. This is big progress.

James, writing his weekly book on his form.

I picked easy reading books for James from the tops of the shelves in the younger kids' area. He loved this first one, Lola Reads to Leo, because he loves it when his big sister reads to him! James also adores babies. Always has. The neat thing about reading a book where one child reads to another is that it made James really want to read to me. And after he read this one to me, he kept finding more to read to me. I love our library!

Love that writing practice!

 I loved the playful illustrations for his next book, The Duck Who Played Kazoo. I think James both loved the story of the lonely duck who found friends and a new home, as well as the whole kazoo angle. Because isn't it fun just to say "kazoo"? James loves music and silly things, so being able to make a kazoo sound on each page as it sings a slightly different song (to match the duck's emotions) was super fun too.

We checked out three books for this coming week. I'll let you know how that works out.

MyAutismTeam.com - I Wish I'd Known ...

"I wish I'd known ...." is a common lament from those with hindsight and experience ... that comes after the fact. With parents of children on the spectrum, it's a constant. We're all searching for more information, better understanding of our child, and answers that will help us.

It's not just for a diagnosis, root cause of our child's autism, and what to do/not do for our children, it's also where to take them for dental checkups, summer activities, and ideas for how to fill the deadly (for us) Unstructured Time.

After four years of coming to grips with our son's autism, I began emerging from a fog to realize several things that had crept up on me ... including that I was isolated and feeling a keen desire to connect with others. To share what works/does not work.

From my association with the CATS Program, I first heard about My Autism Team this past winter. They are committed group with experience in online communities and referrals that wanted to build an online community of parents of children on the Autism spectrum, so that they could share resources and rate programs and services for their families, in hopes that their hard-earned knowledge could benefit others, and vice-versa.

Login screen for MyAutismTeam.com

When their beta site launched, I plunged in and began building a profile, adding team members for all that had been helpful with a son who was largely non-verbal, developmentally delayed, social, and sensitive with certain noises. People who dealt well with yelling and crying during an office visit and who were willing to act as socializers for an atypical child. I've been reading others' profiles, searching to see if any providers will work for us.

Then there are the posts from other parents. Ones that make me smile, cry, and hurt my heart (both good and bad). The messages from other parents across the U.S., encouraging one another to hang in there, that we are not alone in our despair, frustration, and determination to help our kids and savour the good in life.

Questions, encouragements, advice. It's all there.

There is room for so much more and so many more families.

If you haven't visited already, please check out MyAutismTeam.com, or send an email to a parent you know who might be able to use it. They are also on FaceBook.

If you live in the SF Bay Area, MyAutismTeam.com is looking for parents to come to their office and give feedback on their site.

IEP, Part II

Met last week with James' Services Coordinator to continue and wrap up James' IEP. She'd had time to meet with his aide and teacher before our sit down. There was that pesky behaviour report  to sort through and distill into goals and measurables, remember.

The meeting started with a recap of behviours covered in the outside therapist's report that had also been observed in the classroom (which was almost all of them). Basically, when left with unstructured (and unsupervised) time, James responds by wandering, bumping, and misusing common objects to get attention from others. A related issue is that it can be difficult to keep James focused on a task that does not involve computers, although once he starts a worksheet or a reading assignment, he will work steadily, but with constant prompting.

One of the goals we discussed looks like they will be for James to remain seated through tasks with a minimum of prompting 80% of the time. The other will probably be for James to choose from a selection of activities or items from a sensory box to self-regulate during unstructured time.

Great schedulers from sayitright.org

Tools and visual aids mentioned in the report were then reviewed and weighed. The visual scheduler has been helpful in the past, but has been difficult to integrate in this year's classroom setting. The countdown clock, on the other hand, has been extremely effective for James. The Behavioural Therapist suggested coming up with a clipboard of activities that James can choose from for unstructured time. I like this idea for both home and school, and hope it will be another useful tool.

We discussed how James was doing with his classwork.  Pretty well, it turns out. He's aced three spelling tests and knows his numbers up to at least 100. He is in the lowest reading group in the class, but is one of the better readers in that group. His writing has improved enormously over the summer and he can now use the classroom paper instead of a blank or specially ruled sheet. He is extremely motivated to work with his class and is getting very good about asking for what he needs to keep up with the pace of the day.

Grade 1 math

"More" and "less" are pretty confusing for him, and I am working to get him to recognize plus and minus signs, and what they mean in math. James' teacher has sent home a math workbook so I continue to work on math with him at home. She checks in with me almost every week via email, letting me know the good and needs work highlights as they come up.

Every time I talk with someone on James' support team, I learn new things. That morning, I learned that it was unusual for a teacher to take on a full inclusion student as one of her regular kids and follow along with his goals and progress so closely as James' teacher is doing this year. We've been fortunate to have had teachers for James who observed and included him as much as possible in the classroom setting that I guess I took it a bit for granted, even though I was happy it was happening.

I lost track of how much time we met -- easily a half hour and probably over that. There's still more -- now comes my review and final comments before signing off. Almost there!

Countdown clock from zedomax.com