Friday, February 21, 2014

It's time for another IEP meeting, and for once I'm not looking forward to it

In addition to Joseph, my older daughter Maria also has an IEP, so that means twice the IEP meetings at school. Since the beginning of our work with the special education system in our school district, it's actually been a pleasant experience! That seems to be an unusual situation, and I've always understood that our kids are young, so there's plenty of time for disagreement and unpleasantness.

This year Joseph has been in the First grade and last month he turned 7 years old. I've been a terrible daddy blogger, and it's been almost 13 months since my last post! I haven't even posted a birthday letter or birthday video of him this year.

He's made so much progress since he was diagnosed at age 3 and a half, when he was effectively non-verbal. He still has speech problems, but he's definitely able to express himself verbally and understand what others are saying to him. But that's not new since last year. On reflection, I think that's part of the problem. Part of many problems even. It's why I'm feeling anxious about the upcoming IEP meeting, and why I haven't been posting here. Because over the last year, I don't think a whole lot has changed for him or us. There haven't been any new milestones to celebrate. We've simply settled into a rhythm.

But Joseph still can't read. He still doesn't know the whole alphabet even, and that is really bothering me. I see it as the next big challenge, teaching Joseph to read so he will have a new way to learn. This year, I've found myself questioning if public school is still the right setting for Joseph at this stage. Looking back at the last 3 years, I think there's no question that we made the right decision keeping him in the local public school, but things change over time. The school is entirely willing to deal with Joseph's behaviors, but are they ABLE to? I even think they've been sugar coating things more recently. Today, his daily update said "Joseph was biting and kicking today." and "I had a Good day" was circled.

Here, this is from the draft IEP his intervention specialist just sent me.
Joseph is able to label the letters in his name using a song for help. When lowercase letters are isolated, Joseph is able to expressively label 7/26 letters (a, c, m, p, q, w, x) letters, and receptively identify an average of 13/26 letters (not consistently).When uppercase letters are isolated, Joseph is able to expressively label 7/26 letters (a, b, c, m, q, t, x) letters, and receptively identify an average of 16/26 letters (not consistently). Joseph is able to receptively identify sounds for 14/26 letters given a field of 3 letter choices. Joseph is able to read the words the, boy, girl, dog, runs, jumps, swings, and sits. He is currently using the Reading Milestones reading program. He is able to label pictures with a written word in the Reading Milestones curriculum with 60% accuracy.
 He's been having a lot of behavior problems, which makes learning difficult. Apparently, this week he didn't want to work so he started taking off his clothes, and then urinated on the classroom floor. My son, the showman. They're continuing to use the positive reinforcement system they've been using, and when he gets out of control they take him to a seclusion room (with my blessing, but that's a whole different post).

Looking at the last IEP, I can clearly see he's not meeting his goals in reading, and I think it's pretty clear why: because Joseph is very clever and exceptionally good and not doing things that he doesn't want to do, and no one has figured out how to reliably motivate him.

I've always felt incredibly grateful for my kids' team at school. I feel like they really care about my children. I feel like I'm being disloyal to them, as if because I'm not satisfied with his progress that I don't think they're doing everything they can to help my son.

This monday is not going to be a rubber stamp IEP meeting, but this is such an emotional situation for me that I'm worried about making myself clearly understood without hurting anyone's feelings or sounding ungrateful or accusing. Of course, making my son's needs understood is more important than making sure that I don't hurt anyone's feelings.

I began this post on Friday intending to ruminate and finish it up over the weeken. Of course my kids got their aADHD from somewhere and now I'm headed toward work with no free time between now and the meeting tomorrow morning so this is as complete as the post is going to get. I'm typing this final paragraph on my phone. 

Friday, January 25, 2013

To My Son on His 6th Birthday

Dear Joseph,
Wow, I'm taking procrastination to new heights. At least it's still January. :)

2012 was even harder for us than 2013. You seem pretty unaware of most of our tribulations, and for that I'm thankful. Sometimes I wonder if you will remember this year when you get older. I hope just the good stuff, like Buddy Camp, Christmas, Amal and Ashlee, your teachers from last year.

Kindergarten has been great for you. You have been flourishing in your new environment. With lots of work, your communication continues to get better all the time. I'm trying to find new, interesting ways to help you expand your vocabulary. I think by this time next year, you will probably be reading. I'm excited for that.

I'm having trouble finishing this email, but I don't want to delay it any further. A couple of days before your birthday, I made this video of you.



Happy birthday, my son.

Love, Dad

Wednesday, December 19, 2012

Santa Claus is Real

When our first child was young, I decided that I did not want to lie to my kids because I want them to trust me, and I don't want them to grow up thinking that its ok to be dishonest.

One thing that I thought I was still lying to my kids about was Santa Claus. I didn't encourage a belief in the Fat Man too much, but I would not say Yes when asked if Santa is real. I would just tell Maria that I don't know for sure.

Saint Nicholas was a bishop in the 4th century. He's become known for secret gift giving. The story that might be the most familiar is about a man with three daughters who could not afford to pay their dowry. Because of this, he would not be able to have them married, and they would probably end up as prostitutes. Nicholas heard about this, and one night he went to the man's home and threw three purses of money in through the window (or possibly the chimney, where they landed in stockings hung by the fire to dry. Partly because of his own humility, and partly to spare the father the embarrassment, Nicholas did this anonymously. This legend is the origin of our modern Santa Claus mythology.

Now, it's not a well kept secret that my family has been struggling for the last couple of years. After Joseph's diagnosis 2 years ago, some pre-existing mental health problems were aggravated, and the short version is that we've been without regular, long-term work since around then.

Once again, this Christmas our children will be receiving gifts that have been donated to various organizations, our church, and even their teachers. I'm not entirely comfortable accepting something so personally, but I know that these people want to help me give my kids the best Christmas they can have because they care about them.

Over the last couple of weeks, I've been pondering who we should tell the kids the gifts are from. It occurred to me that these gifts are from Santa Claus. Anonymous gifts to my children from people who want to help them. Sure, it's a little cheesy or sentimental, but Santa Claus isn't a fat man who lives at the North Pole who flies around the world in a flying reindeer propelled sleigh. Santa Claus isn't parents that wrapped some of their kids' gifts in a different paper and put "From Santa" on the tags. Santa Claus is the mystery and wonderment that our kids feel when they come downstair to find wrapped presents that have materialized while they slept. Santa Claus is Gary James and the folks at A4CWSN who are in the middle of giving 40 ipads to 40 families whom theyve never met. Santa Claus is the people who brought my children the Christmas gifts they will be opening on Christmas morning, and the people from the organizations who spent the time collecting the donations, and the people who donated the money, food, clothes and toys that eventually ended up here, even though we were just a paper that said, "Girl 7, Boy 5, Girl 18 months"

Saturday, December 1, 2012

AppCrayon Stylus Review

I'm behind on my stylus reviews, sorry!

Here's the AppCrayon stylus from DanoToys. You can find it in-store at Target, Walgreen's and Bed Bath & Beyond for about $10. It was designed by teachers and therapists for Kindergarteners. It's plastic but feels well-made. It's barrel is triangular to promote a tripod grip. It's tip is rubber and a little bigger than most styluses. It's slightly squishy but not too much. It's also got a thing on the end where you can attach a lanyard or something.

For educators, they're available in packs of 6 at a discount.

I like this stylus for the kids and they like it too. Obviously, it was designed with them in mind. The size is good, it seems to be durable, if they chew on the top end it's not going to damage the stylus or their teeth, and they like the bright color of the plastic. I've tried to keep them from pulling the tip off and I've been successful so far. It's on there pretty tightly. I didn't see any replacement stylus tips, but since the stylus itself is $10 and you can buy it at brick and mortar retailers so there's no shipping, if the tip comes off buying a new stylus isn't going to hurt.

I don't have anything else to say about it, because I don't really see any downside to this stylus!

Thursday, October 4, 2012

Wacom's Bamboo Solo Stylus

Wacom's Bamboo series of styluses
Wacom has been the leader in pen-based computer input devices for years, so naturally they have introduced a stylus for capacitive touchscreens, like the iPad's. They've named the line after their smallest drawing tablet, the Bamboo. I'm evaluating the Bamboo Solo, MSRP $29.95.

I received the Bamboo Solo stylus gratis from Wacom for the purpose of evaluating it for use by children, particularly special needs children. I evaluated it concurrently with the Studio Neat Cosmonaut (which you can read about in it's own post).

With other, cheaper styluses I've let the kids use in the past (the next post will be about those), the rubber tip always comes off and is ruined. Typically within a couple of days. The Bamboo's rubber tip cap is secured by a cone that screws on the end, just like on a pen. When you remove it, rubber tip is exposed. It seems quite secure. To replace, you pull the old one off and push the new one on. Replacement "nibs" are $4.95 for a pack of three. In addition to the "soft" nib that is included with the Bamboo stylus, you can also purchase "firm" nibs. They sent me a replacement pack of the standard nibs, but not the firm ones so I'm unable to describe them.

My initial impression is that it's very pen-like, which is what you would expect, but you would be surprised at how little like a pen many cheaper styluses feel. It's a little shorter than a standard pen, 120.8mm. The barrel's diameter measures 9mm. According to Wikipedia, the standard pencil diameter is 6mm-7mm and it's length is 190mm. It looks like a pen, it feels like a pen. That's good because our kiddos are practicing to be able to write, draw and color with real pens and pencils.

The outside of tip of the stylus is rubber, which I am not usually a fan of. I've been looking for a good stylus that uses something other than rubber for a tip. I don't like when a stylus has that rubbery feeling when dragging a rubber tip across an iPad screen, like it's gripping the glass. However, I was pleasantly surprised by how smoothly the Bamboo glided. There is, however, a caution in the very brief  "Quick start guide" included in the package that notes, "Choking hazard, keep away from children." So I would exercise caution if your kid is a chewer (which Joseph certainly is).

Heft: Great. It doesn't feel like you're holding a toy. It has the weight and balance of a nice pen.

Chewability: Low. It's almost all metal, except for the tip. If the tip was chewed upon it probably would come off. The first tip was chewed upon and came off quickly. Not so good for oral stimmers. The non-writing end also has a little metal cap that twists off so you can remove the pocket clip. This can get lost of swallowed if fidgeted with.

Adaptability: Good. It's close enough to the standard diameter of a writing tool that adaptive devices can be used with it.

In a Nutshell: Great design, very much like a traditional writing tool. A good pick when working on more fine pen and pencil skills. I'd choose this one for handwriting practice in particular. An excellent choice as long as your child is not a chewer like mine is. :)

Monday, October 1, 2012

The 'Cosmonaut' stylus from Studio Neat

There are loads of choices when it comes to finding a stylus for your iPad or other tablet device. So of course, there are loads of reviews of styluses out there. But all the reviews I found were meant to help adults choose a stylus for themselves. Kids have different needs when it comes to choosing things like styluses, so I'm attempting to review some of the options out there.

If you're looking for a stylus for your child, consult with their occupational therapist or teacher to see what shape you should be looking for, short, long, fat, thin, etc

Don't miss my next post, about Wacom's Bamboo Solo stylus.

The Cosmonaut by Studio Neat
MSRP $25

The first stylus I received gratis from Studio Neat, which they've named the Cosmonaut. It's fatter and shorter than the typical pen or pencil that many styluses are modeled after.The barrel is rubberized from end to end and the conical rubber tip is separate from the rubberized barrel. Though I've not had problems with the cover of the tip coming off, it is a concern in the long run as the Cosmonaut's texture invites gnawing from my youngest two. But I think that activity is naturally directed at the opposite end.

The Cosmonaut's monolithic design make it pretty simple to describe. It's two distinctive features are it's size, which is comparable to a dry-erase marker, and it's rubberized grip. In Joseph's case, the size seems to be more of a hindrance than a help, making it more difficult for him to form the proper tripod grip which he's been working on for a while and is coming along nicely. That's not to say this is a flaw, every kid is going to have their own needs. So if your child's OT says that wider writing tools would be easier for them to use, then this is a great bonusin their case. I've been informed that the fatter size is better for people tired hands and motor skill deficits.

The rubber that encases the Cosmonaut is the same texture as the outer layer of our OtterBox iPad case. It makes it very easy to grip, which means that it's easy for food and dirt to stick to it, but it wipes off easily.

Chewability: Excellent. If your kid is an oral stimmer like mine, the Cosmonaut is a good choice.

Adaptability: Not so much. It's unique size makes it impossible to use all the little attachments that help build a good tripod grip, but that may not be an issue if this is otherwise a good stylus for your child.

In a Nutshell: Great for oral stimmers, for kiddos with weak grips and fine motor difficulties, and for activities that would normally be done with a marker (coloring, some drawing, etc). I think the durability is the Cosmonaut's strongest feature.

Saturday, August 25, 2012

Seeing Things a Little Differently

Blue Mountains, Australia
^not my photo :)

Friday we visited Joseph's new classroom for the walk-through. I saw something that I haven't seen since before his diagnosis. I watched Joseph in the middle of a group of typically developing kids of his own age.

Just before Joseph turned 3, my wife and I had to put the kids both in daycare for a few hours a week while I was in school and she was at work. That's when we were told that he needed to be evaluated for developmental delays. One day, when I arrived to pick Joseph up, I approached the classroom and saw them through the window. The teacher was sitting in a chair reading a book to the kids. There were probably 6 to 8 other kids sitting attentively in a semi-circle in front of her. And on one end of this row of children, Joseph laid on the floor, rocking gently from side to side, with his hand stuck in the back of his shirt fidgeting with the tag.

After his diagnosis, the only times I've seen him as part of a group of peers has been in his special needs pre-k class, which was half developmentally delayed kids and half typical peer models. It was frequently hard to tell which kids were which, but Joseph always stood out as he was consistently the most "high-spirited" in his class. But the classes were generally pretty small, and Joseph didn't seem so different from the other kids.

So Friday, Joseph visited his new classroom and his new teacher along with most of his new classmates. Dublin is an inclusive school system, so he will be in a general education classroom and taken out to their special ed "resource room" by his intervention specialist as needed. So the new teacher (who was Maria's Kindergarten teacher two years ago) took all the kids to her classroom. She introduced herself and then took the kids on a short tour of the room. Joseph got distracted by something halfway through and got left behind. After the tour, the class had a little mini-circle time. The teacher had them all introduce themselves by name (which Joseph is very good at: "My name's Joseph!"), then she read them a story about the first day of Kindergarten, and she talked to the kids about the story.

Listening to Joseph's peers talking, articulating their understanding of the story, the contrast made me realize just how far he still has to go to "catch up." It was sobering, but not discouraging, depressing or disappointing (probably in part thanks to Celexa and Wellbutrin.)

We're at a point of new beginnings with Joseph. On Monday, he starts Kindergarten and will be surrounded by 90% typical peers for the first time in two years. Also, we are finally getting his ABA program started. We're so close, we had the start-up training scheduled and our psychologist had to leave town suddenly and it got postponed the day before it was supposed to happen. The point is, my resolve has been strengthened, and I'm more confident than ever that he is on the precipice of great progress.

For example, this morning he told me that last night he dreamt of unicorns. That was pretty remarkable, it is the first time that he's told us anything about his dreams. He asked me if I dream about dragons. Then he asked his baby sister what she does at night. :)