This Year Is Different

Look what happens, when your special needs child is in the right school and you are not having to fight for inclusion, proper placement, and education. Also, you finally have a place of your own again, fires be damned!

You can have the time and resources to buy your child a bed, so they are no longer sleeping on the floor, because they don't want to fall off their twin mattress that has grown too small over the past, chaotic year.

Silver lining for being evacuated due to a catastrophic fire last month ... I discovered that James could sleep in a bed, and well, if it was large enough. He adored snuggling up in the fold-out queen bed and was able to snooze through bathroom or kitchenette use in our hotel room.

Now he has a queen bed of his own that he helped pick out. I bought the frame on sale from a local store and purchased the mattress online. James also picked out his own bedding.

A big shout out to our friends, who helped put together the frame and un-spring the mattress from its VERY heavy box! You both are awesome.

Sleep well, my big guy!

Weekend Chores

James is ten, almost eleven. One of the things I have been working with him includes learning skills to live more independently. James is good when self-directed, or working off a chart.

This morning, we worked on gathering laundry and gathering for washing. Laundry takes the longest, but he is getting better at it. I still have to watch him load the washer because sometimes things he throws in his laundry basket should be be added to the washer, such as stray toy building bricks, his jacket, or a plastic bag of dirty clothes (from an outing).

Washing dishes is tougher for James, with the slippery dishes and difficulty he has making one hand grip a cup or plate and the other a sponge to administer a scrubbing. I've found it's best to try with plasticware ... and have a spare shirt and pants handy when he gets his first set splashed with water.

Last weekend we straightened the DVDs and VHS tapes.

Baby steps!

Magic Marker Monday: Warming a Room

My Dad suffered a setback and went back to the hospital. He's now in another rehab facility to get his strength back to the point where he can stand back up again and help transfer himself from his bed, wheelchair, etc. He's working back to using a walker.

Not only is it very discouraging for him, it's also hard on all our spirits. He's going to be there over Thanksgiving, which is a family holiday that my folks love to host.

The staff try hard and the facility is just about as good as it can be for our price range/health care options. Still, it is so not home.

 James, his sister, and cousins have been doing their best to warm up the place. Luckily, the staff are more than willing to share their paper and markers!

For more meaningful artwork, or to share some of your own,
visit 5 Minutes for Special Needs for more Magic Marker Monday.
(yes, I know it's out of order this week -- so is our life!)

                  

Son of IEP (or: IEP, Part III)

We're still working on James' IEP!

My latest round included an hour of careful review of the 23-page draft plus 3 pages of meeting notes and making comments in the margins. I thought it would take a mere 20 minutes. After all, we'd already put 3 hours into meetings to discuss all this, right?

Silly Mommy. Cue the FAIL buzzer sound.

Somehow, seeing discussed items in print raises even more questions for me, hence margin notes and the need to check in again with the Services Coordinator. 

In particular, I had questions about the goals stated in two different places about the time (percentage-wise) James would be on-task, in class. They seemed to contradict each other, and I did not want James to be pulled out of class if an in-classroom solution could be found.

I also wanted to know James' schedule of services. He's currently pulled out for speech (twice weekly), O/T (weekly, up from a set number of hours a month),  and adaptive P.E. (weekly). It's good for me to have this schedule at home so I can do my part to ensure he's at school at those times to get his services. Because outside appointments will happen.

Shared info from Behavourist meeting almost 2 weeks ago, including her caveat that she is contracted to support the family, but the school is welcome to call her to ask questions and discuss issues (thanks to the lovely confidentiality forms we all signed last school year).

Requested the addition of a pronoun goal for speech. James keeps using them in exact opposites (he/him/his for a girl and she/her/hers for a boy) and referring to others when he's really trying to tell us how he's feeling.

And yes, THIS year I checked to make sure James was signed up for the extended school year, so he would be eligible for summer school (if it's not going to be like it was last year). Pause for Kuzco victory dance.

There were some other items, but I can't clearly recall them now. What I did do was take most of a week to review the IEP draft and then raced over to the school at 4pm on a Friday so I could hand it in to the Coordinator and ask her a few questions. She was very patient and even cleared up the on-task/time in class confusion on my part, as well as addressed my notes on almost every page. Phew! She handed me her pen and I signed off.

She also made it a point to tell me that she spent a few hours with James in the classroom this morning and that she both enjoyed herself and was excited about how much progress he has made. That made me feel so good. I appreciate so much that she has been going the extra 10 miles for us.

I did not keep an IEP draft for myself, because it's now going to be retyped and recopied for the whole team. Meanwhile, James has an awesome set of goals in place for him this coming year, and the work has already begun.

Can hardly wait for Part IV: Epilogue (in which I review the final format and call it good. Or not.)

Asking For Help & Managing It Too

The Beatles had it right:

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

Over the almost four years since we started asking for help for James, I've learned a lot about asking for help, getting it, and managing all the bits that get blown at me during the process. Despite all the services and support we've already received, there's so much more help we as parents and James will need. Some we won't get. Some will crop up unexpectedly. But I've learned that much of it won't come easy and will need a lot of management.

It starts with hearing something or reading an article. What? A program or service that sounds like it would help James? I'm on it! Or overwhelmed, before I even pick up the phone or call up the browser window. You see, what happens next is something like this:

1. Leave a message (assuming contact info is right, which is not always the case), & pray it's coherent to whomever's picking it up. If I am lucky, there is no Phone Tree of Doom involved
2. Wait for the call back
3. Call them back when you miss the call / Contact them again after a few days without a response
4. Complete intake of information, as needed
5. Call them back when you miss the call / contact them again after a few days without a response
6. Take notes. Lots & lots of notes
7. Make mental notes to make time to organize notes (which soon grow into message haystacks around the house); ditto the three calendars that you swear you are going to consolidate
8. Speaking of calendars, make notations in pencil or erasable marker, because they will often have to be changed; the events that trigger the changes will be many and fascinating
9. Be surprised by things like more paperwork, possible credibility crashes, and extra costs revealed
10. Hold on to my temper and be calm and polite when frustrated. Keep asking questions
11. Follow up after, with thank yous and/or feedback

There will be paperwork. Further calls and emails to make. Folders, brochures, and pages of web content to sort through. Some of this will have to be worked on while trying to be a mom and keep the house together.

Sometimes my hopes outstrip what is actually available and I have to manage my own disappointments. One positive outcome of my having to leave my job is that I can finally take a few steps back and my desperation that every request *must* come through has lessened. Respite care, for example. That was a year of hitting dead ends and my head hitting the wall as I struggled with the ache of needing respite, not having any money, and having the provider send me mixed messages instead of people. Man, I cried over that one.

Then I asked again (different person this time) and I made contact with a different Vendor. Voila, respite! It didn't happen the way I'd pictured overnight. I came to the realization that part of the respite hours were going to be everyone getting briefed, introduced, and assessed. Even when we'd settled on the people who worked well with our family, sometimes life still throws curve balls. Just like us, the respite folks have family obligations and experience illness & car troubles.

Makes me wonder: How do other people ask for help and what are their helpful managing strategies?

Tackle It Tuesday: Environment

Finally, after rain, clouds, grey, snow, and more cold rain, we are getting bursts of warm Spring weather. Back in January I invested in a beautiful pair of loppers are went to work pruning trees, bushes, and vines. These things combined resulted in our going bonzo with new growth. The windstorms mean that leaves and debris are everywhere.

I have been working to clean the yards (front and back) for the kids' playing area, and for our own enjoyment. Yesterday, James came out and "helped" me rake. He gave it a good 5 minutes before heading off to swing in the newly uncovered play area out back.

The "before" pics were unremarkable, so I'll show you some of the our yard as it is now, after several hours, days, and minutes of work. Enjoy!

Part of our outback:


My son, raking for the good of the environment!


Our plum tree was about 3 weeks ahead of it and got blasted by rain, sleet, hail, and overnight freezes; all the blossoms were stripped off PDQ and now only a few branches have leaves ... The cherry tree is blooming at just the right time, and full of snow white blooms. I am dreaming of early summer cherries:


James thinks the few falling petals are snowflakes!


The grape vines are leafing out, which makes it easy for me to spot the ones I missed clipping out of the nearby trees ...


"Say 'cheese,' Mommy!"


Look at how full this bin is! I even smooshed it down a couple of times so more could fit inside:


Thank you, helper James!


What is your mission? Read and be inspired at Tackle It Tuesday on 5 Minutes for Mom. Post your own story to share with other Tacklers.

Salad Spinner

James has become increasingly helpful around the house. It's great to have someone willing to fetch and carry things for me and be upbeat about learning to bus his dishes after meals.

While casting about one night for an activity he could do to help prepare dinner, I accidentally stumbled upon a fantastic one -- the salad spinner!

Oooh ... how spinny! And so great for working those muscles in your fingers and hands!

It's going to be hard to top this one. At least I'll be upping my intake of leafy greens!

"Best Thing"? Really?

This news snipped caught my eye "Brain scan 'best thing so far' in detecting Autism." It seemed so cavalier that I clicked to the article.

I do not agree. At most, it's an interesting future diagnostic tool. I see it as more of a "best thing" for the people who perform the scans and conduct research than for the patient.

When James was first diagnosed, his pediatrician said "He can't be autistic. He looks you in the eye." I had to insist that he call in a referral to our Regional Center. They sent out a wonderful woman, who talked with his father and I, and tried engaging James in a series of activities. She listened; she handed us tissue when we teared up. She looked at James and took lots of notes. And she wrote up orders for O/T, Speech & Language therapy, and home visits for a developmental specialist, who later became a personal friend, mentor, and support.

Pardon me for snorting and being skeptical that a brain scan is better than anything that woman and those groups of nonprofits did and continue to do for our son.

Brain scans CAN: can help target patterns of activity in an individual's brain; help provide scientific evidence of aberrations in brain function; be costly and freak out the patients.

Brain scans do NOT: help a person interact with others; provide behavioral redirection; cure Autism; show which therapies might be most beneficial to an individual; open doors for therapies that will help the individual and their families to get the help and services they need.

So in my opinion, right now these new brain scans are really not the "best thing so far." So far the professional people who care and work with our kids are the best things. Ever.

Derailment and Change-ups

I'm just getting back from a good 3-week fight against a sinus cold. It's sapped my strength and threatened to turn into an ugly sinus infection. Exercise meant trudging to the bathroom and blowing my nose. Victory was getting kids to/from school on time, with lunches & completed homework. We won. Barely. Go, us!

In the midst of this haze, puffiness, coughing, and exhaustion, North Bay Regional's past referral sent us a good fairy from California Parenting Institute (or, CPI, as it's commonly know around here) to help.

Oh, how we needed her. We just didn't know it.

First, there was the relief in talking to another adult. One who's mission is to help parents become better parents, regardless of the background story. Second, it was extremely helpful to have someone ask focusing questions about concerns and goals. Third, hope was renewed in defining said goals and realizing that I could indeed make some basic, small changes and renew commitment to make our time less ... well, dragging. Focus. Focus is a good thing.

Together we came up with some simple play activities with which to engage James. Because he cannot focus on anything on his own except TV, computer PBS kids games, or (occasionally) a book. This has been making feel as though I was losing my mind, because I can't DO anything else when he is home. Also, I know that plugging him into electronic media is a bad idea, because he does not transition well away from it.

What ideas did we come up with? Well, simple ones, like:

2

coin sorting ...

helping him play with his trains ....

and working on colouring projects, which also help as a connection activity with Dad

what I love, is me recommitment to taking the kids with me to the gym, so I can get in some exercise, steam room, and TLC while they get to play and do crafts with other kids. The kids also like the possibility of getting some frozen yogurt at the cafe.

What makes me even more grateful for this change-up in our daily routine is that I fell off the wagon and went back to our old ways one day and discovered what a hideous contrast it make for me, when compared to the new changes. I am sold, happier, and more hopeful. Also, so thankful that this service and these people are here and available to help. Even though I think of myself as lucky, caring, and smart, I certainly need this help!

Calling for an Assist

I just made a call to the Swain Center, to see about getting another evaluation for James. Right after his initial assessment by the North Bay Regional Center, he started receiving treatment there twice a week with a speech therapist. After age 3, we continued to visit on a weekly basis, when school was out of session, as part of our Respite Care.

The more I see of kids and services, the luckier I feel that he got such good help up front. His therapist kept at him, and didn't let James get away with much. This is tough, because he knows how to use his charm and cute looks. She knew he needed to be pushed and found ways to successfully challenge him. Even when he was tired and cranky from going to therapy instead of napping, she got him to accomplish just a little bit more.

When it came time for his first school IEP, she helped me set better goals for him. Because the school folks were setting him goals he'd already achieved (they had not worked with him at that point), and I am not a speech specialist, this woman's help was invaluable to us. I am hoping to have her input to bring with me for a meeting with James' Kinder Team after school starts.

Perhaps I should have done this earlier, but I hate overscheduling James. He's been progressing so well with social and speech development this summer -- the sessions at the gym's Kids' Club with older kids, participating in the city's Summer Camp program, and hanging out with older cousins at the beach all helped him take advantage of some great modeling to imitate and build upon.

Now, however, I am reliving the last part of his preschool year, and the disappointment with the speech services and goals (or lack thereof). I know Kindergarten will be a whirlwind of activity and excitement. I'd REALLY like him to succeed, so am hoping that by having the Swain Center's input, we'll be off to another good beginning.

SOOC Saturday: Interactive

James loves to play games on the laptop. If we let him, he would play for hours on PBS Kids. His favourites are the Curious George and Clifford games.

I've noticed this has changes his experience with the TV. If you look at the picture, James is using his finger to push a photo out of the way. In this part of the DVD, the pictures tilt over and turn off the screen by themselves. James wants to help them.

The Slurping Life is going through some tough times. Visit Melody and Mac for some beautiful and thought-provoking images.
  

Getting into SHAPE

I am listening to James working with his SHAPE assistant. He is laughing and singing along to his favourite "walking, walking" song. The tune is like the "Are You Sleeping, Father John?" song. They march, tip toe, and run in circles. What is not to like?

We are working on colours for James. He can say them most of the time, but his matching is not consistent. We also work with his Flash cards, to work on words and sounds. Some cards he really likes, like "happy," "eye," and "apple." Other ones he ignores, such as "noodles," "Heidi," and "oh boy!" We also work on stop and go, as James will run out into the street, looking behind him and laughing at me. It is just a big game to him and one of my worst nightmares.

James also likes to work with the Play Dough, something he wouldn't do at first. He also likes to string beads on a string. He does great, except for that last poke through the bead before he can slide it down the string. After a few "helps" he can do this. Sometimes James will bring out his favourite books for reading, and sometimes the SHAPE asst. will pick the books. I admire so much their patience to work with my son. I learn something new from watching them work together almost every time.