Sunday, August 29, 2010


As I have been swallowed up into the routine of school and other annoying factors that signal an end to my favorite season, summer, I have decided to focus on purses. Yes, purses. My brain has been so full of ideas for adapting curriculum,
several appointments lately for N, how to help my older son stay on a budget, etc., that it just needs a diversion, a little side trip to keep things more interesting. What could be more important to inquiring (female) minds than what sort of handbags are “in” for fall? If summer has to end, why not console oneself with a new purse? (Okay, if I sound shallow, so be it. Maybe it's just my coping mechanism.)

I found some very good deals on my first foray out into the purse world. I was so tempted by a purse that was so “me” that I only realized after examining it closely for about 10 seconds that I already own it! Good to know I’m consistent like that. I like the “Cross Body” bag with its many zippers and compartments; this one was red. What I really liked was a leather bag by The Sak that was purple. It was also on sale for 40% off. Many others caught my eye, especially the lovely orange one with braided gold metal straps. Too bad --it zing-ed me with its $265 price tag so that I pitched it forward as if I had handled a hot potato.

But many of the bags I looked at lacked something. I smiled to myself when I thought it would be good if the non-boring ones had an area of their own, marked “Bags With Purse-onality.” I like a little something that will be fun and extraordinary, although I was tempted by a few sleek, black ones. I walked away empty hand-bagged. Decided to do a little research first, and I found that a dominant trend this fall is beige. Not my favorite. Below is a different article you might like if you are in the market, too. (And there is no mention of beige.) This could be a good time to buy, since I heard that many stores are putting items on sale that women might buy for themselves. This is because we don’t do much buying for ourselves during back-to-school days. (Thanks for the tip, A.T.!) But this may be the time we could use a little pick-me-up the most.

Wednesday, August 25, 2010

Now, People, Get Real

For some reason, N.’s various comments about life in general have me laughing so much lately. He has so many one-liners that I can’t keep up with them. Here are a few:

*We thought we would have the pool to ourselves several nights ago, but there were a few families with children there. (No tiny ones, though, and crying is something he detests.) N’s disappointment was palpable and when I asked him about it, he said, “I think I’ll tell them it’s past their bedtime.”

*I think he has picked up on the anxiety I have about his new school and entry into high school, so he tries to keep things light. (Always so concerned for me—SWEET. Except for when he is in teenage mode.) I was expressing concern for his back, which has been hurting a lot lately. His backpack is ridiculously heavy, and I said that it was. His reply --- “That’s just the way high school rolls, Mom.”

*We were discussing his sleep patterns and the doctor’s recommendation for another sleep study. I told him that they might recommend another C-PAP machine or another surgery. He said, “I’ll stick with Plan A.” I burst out laughing. (Not sure if he meant not going for the study or getting the C-PAP machine!)

*He loves to sort through the mail in the afternoon and I heard him muttering, “Now, people, get real”. He had come across a catalog selling Christmas wreaths, and he was letting them know it is way too early!

He. cracks. me. up.

Monday, August 23, 2010


Whether its cause is hormonal or triggered by too many changes going on in my life right now, it is undisputable that chocolate is a need and not a “want”. After school today, I decided that N and I would swing by our neighborhood Walgreen’s for some lovely chocolate. Said Walgreen’s has profited greatly by locating near me, if only from my visits to their candy aisle.

Only one thing caused me to lose my laser fine concentration on the task at hand-- N seemed to somehow know each vice that would be more than a subtle temptation for me! He pretty well skipped down the aisle, stopping at each likely spot to sway me. “Dark chocolate Raisinets, Mom?” I snapped to attention only briefly, as I was pondering the dark chocolate with red pepper by Lindt. While I was comparing the finer points of various Dove promises, he went straight to the coconut M&M’s, and said, “Ooooh, look, your favorite!” (I do love them so.) He has been paying much closer attention than I thought. (And he isn’t even in on half of these trips for the quick fix.)

I was disappointed that there were not more Dove promises in these small boxes, and he quickly located the BAGS of them. Yay, N! My partner in crime is more adept at finding the bigger versions! I’ll keep him on in his current position.

We got in the car and dug in to our treasure. “Ahhhhhhhhh, chocolate heaven,” said he. I couldn’t have said it better myself.

Sunday, August 22, 2010

Better, Not Bitter

As I re-read my last post, I thought, “Hmm, I sound sorta bitter about my dealings with the ol’ school district and their people.” To tell the truth, I think that often I am. Really, things could be so much better, but it doesn’t seem that there are many administrators who really get it. We have had some phenomenal teachers who have been open-minded, kind, and very creative with regard to inclusion, and my son has had some good years, despite the Special Ed Administration. Maybe these people are overworked and are burned out on meetings and lack of funding.

I have heard it said, “Let tough circumstances make you better, not bitter.” So I have to ask, How am I better because of my dealings with our school district administrators? Here are several ways. I have learned to be prepared. As in, be prepared for anything crazy that these people might suggest. I have had it suggested to me that my son be dropped off at a different point at the school so that he might think he was being taken to a different school. (Yes, they really did say that.) They have turned me into the master of asking, “What? Are you serious?”. Being prepared with that question has helped me in all matter of circumstance.

I have also learned to be persistent. This is another trait that can have lots of value in other situations. The old “squeaky wheel gets the grease” and “If at first you don’t succeed, try, try again” have been put to the test and rewarded more times than I can count in my school meeting dealings. Life demands persistence, and I am grateful to have developed a tendency toward it.

Another way I have become better is through learning to become creative. If something I requested for my son got vetoed, I learned to swap it for something else just as good, but couched in different terms. This is an art I still need to develop, for it often requires quick thinking and good negotiating skills.

I have also become more aware of humor in situations. The neighbor friend that I have referenced has referred to some school meeting situations as, “Straight out of a Saturday Night Live skit”, which has been so true!

So, all of that was not for nothing, and it has made me wiser and more bold for the sake of my son. But there is more I want from the experience. I desperately want my experience to count for something for other people. I don’t want the battles fought to be for nothing, so that the “powers that be” can go about doing the same thing they did before us, keeping status quo. I want it to count as forward progress for students with special needs in the public school system. What can I do to make lasting change and promote willingness to try new things for the cause of inclusion? At times, it burns in me to make more things better than just me.

Thursday, August 19, 2010

We'll Pass, Thanks

Have you ever felt like someone was avoiding you or did not want to talk to you? Have you ever felt like that someone was your school district, mainly the ones who are supposed to provide special services to your child? We have a long and varied, love/hate relationship (ok, you can leave out the love part), mostly with me leaving voicemail messages about my child’s needs and what they (Special Ed Administration) need to do to meet them. And mostly with them not responding or bothering to even call back. It would also appear that they try to get by with the least amount of effort on their part as possible. But we certainly hope this is not the case.

I suppose they started disliking me the first week we were a part of the district, when N came to first grade class. We had already had our IEP meeting and, upon their determination that he was not a flight risk, they made some sort of invisible note that he should not receive an aide for support, even though they determined out loud that that would be best.

After speaking with his frustrated teacher on the first day of school, I knew that their plan to not spend any extra money on my child would not survive. Their failure to provide an aide could, perhaps, be an effort to get him shifted to the self contained classroom or to make the teacher resentful and me give up. Me give up? No way. The first four weeks of school went like this: I went to the school from about 9:30 to 1:30, acted as my child’s aide, went home and called the district, Special Programs, specifically.

Usually into the voicemail recording (and into my log book), I would say each and every day, “Yes, this is Johnna, N’s mother, and I have been at the school today for about 4 hours acting as his aide. You see, he needs one quite desperately, and I am not an employee of the district. Please send someone tomorrow, as his teacher is very ready for her arrival. Thank you. Thank you so much.” I repeated this every day for 4 weeks. Finally, they sent someone. Yes, I was glad. This was only the beginning.

But today, 8 years after I first endeared myself to them, was the ending. The bus with our school district’s name on it pulled up in front of our house, someone hopped out and put a notice in our mail slot and rang the bell. The bus was driving off as I answered the door. Oh, so this is how I find out the high school he is assigned to? Why had no one bothered to tell us before the day school started? I have no idea what sort of plan they expect him to be met with tomorrow. And, I do not plan to find out. Good thing I had something else in place and he has already started at a school outside this district.

Yes, I have always felt that “someone” was avoiding me—the “someones” who are supposed to be providing a “free and appropriate education” for my child. What we got was not free; it cost me a lot. And appropriate? Maybe I’ll save that for another post!

Monday, August 16, 2010

Too Much Birthday

I always remember the title of that Berenstein Bears book. It says it all around here these days. We have definitely been living in the wake of Too Much Birthday. I had one a few days ago and it was lovely and low key. That alone would have been plenty. However, there is no ignoring N’s b-day, and it closely follows mine. We had a big bash for him the day after mine, because we wanted to pack all the fun in before school started. He chose a sports theme, so we had a lively tailgating party. I had plenty o’ birthday sweets and dinner, and now all of his is still hanging around, too. We will also be celebrating out tonight, of course, because it is the Actual Birthday. Combined with his first day of the school year today, we are really overdosing on all the fun we can stand. We do this, oh, a week after Christmas, and a few days after that for the other two in our family. We just like to celebrate in a BIG way only a few times a year. ‘Cause we’re fun like that.

Thursday, August 12, 2010

What the Wizard Said

As I mentioned, there were parts of these visits with the developmental guru that were very helpful and enlightening. He clearly did not have any expectation that families would be doing much besides his “program”, but I am sure that plenty more than myself balked at the requirements of his prescription.

The Best of His “Suggestions”:

1) Patch N’s good eye (he has strabismus) for increasingly longer periods, but not more than 2 hours at a time. Of course, this was supposed to be off and on throughout the day, between and while we were doing other various and sundry exercises. Don’t try this at home, folks! Someone (like a Wizard) needs to look at your kid’s eye and tell you to do it. I do think we avoided surgery this way, although he does still have weakness here.

2) Bombard with language! When the child is playing in his room, put on a recorded story. This can be one read by you or anyone else. He emphasized abundant exposure to language. Also, if the child is nonverbal, make a recording of commonly used words, saying them slowly. (“Juice”, “potty”, “Mommy”, “bed”, etc.) It can’t hurt, right? If the child is saying one word utterances, up the recording to two word phrases. (“Want juice”, “go potty”, “love Mommy”, etc.) And upward. (N still listens to his vast collection of Adventures in Odyssey stories on CD. What a boost these have given his vocabulary!)

3) Use exfoliating gloves for increased periods of time for sensory desensitization. N really did not like this at first but grew to tolerate, then kind of like it. Again, this is something that would have to be started for just a very short amount of time and built up. I would also ask a professional about it. They also taught us some deep pressure and massage techniques.

4) Improve auditory processing and memory by having your child repeat a series of numbers back. This one is so hard and we hated it (I would love to pay someone to do this today!), but it has lots of merits. You gradually increase the number of digits you say (then you yourself cannot actually tell if they got it right because you forgot it, too!), and also decrease the speed at which you say them, so there is more time to have to remember. Tricky!

He gave us a whole lot more than this to do. I really got burned out doing a lot of this stuff and started feeling less like a mommy and more like a circus trainer. (Not that my kid is an animal to be trained, but rather like we did not have a relationship except for this stuff. And it could be rote and often too all-consuming.) Again, this may be more due to the personality of the circus trainer.

The best thing I got out of the Wizard was a wonderful resource for reading. I dug a box out from the attic just a few days ago, because I am ordering N’s Language Arts curriculum for him to work on at school. I found the company’s name on an old book, looked them up online, and found a dizzying assortment of great choices for him! I am so excited that I could still access this unique line of books.

Tuesday, August 10, 2010

Off To See the Wizard

I don’t even remember how I got started on the idea of more therapy. (If you know me and remember this, please let me know.) It seems like N was around 4 or 5, about the time that I really should have been maxed out on therapy for him. Maybe I was thinking about that being a window of time that would make a big difference developmentally or something, but I did research and discovered a developmental guru of sorts (aka, the Wizard). I wanted an outsider to take a look and see how he thought things were going with N. The evaluation would not be cheap, we would have to travel 6 hours, and the ongoing “exercises” and recommendations would be nothing short of boot camp for us all. So, I skipped on over and signed up!

Actually, while I was in the researching phase, I visited with a mom who had an older child with Ds, and she mentioned a period of intensive therapy for her daughter several years prior. I was about 80% sure we were going forward when I found out that she had done something similar. When she told me that they pretty much turned her house into a gym and had a revolving door with all these volunteers coming in to work with her daughter around the clock, I knew that I could not do that. So, my version looked more doable, and I pressed forward.

Then, I ran into The Lady At The Park. I knew of this woman’s background as a formidable advocate for her daughter with autism. She was most admirable and strong. She was well-versed, articulate, and a mover and a shaker in our special needs community. Since I was gathering information, I thought she might be a good one to ask about this venture, and for a few short minutes, I could not believe my good fortune in running into her. I introduced myself, and we spoke about our children while we each pushed a swing. Then, I got right to it. Had she heard of this organization and what did she think of the idea? She said there were dozens of them out there, did not know of this one in particular, but did not think it would be something she would do, all in a dismissive way. I asked nothing further, and soon they prepared to leave. As she walked toward her car, she said something that stunned me. It was, “Mainly because, you know, no matter what you do, at the end of the day, my daughter will still have autism and your son will still have Down syndrome.”

I wondered if she honestly thought I did not really know this. Was she being snarky? Did this stun me because I did not know it was true? No. It stunned me because I felt that she thought I was looking for a “cure”. This is not something I have ever felt powerful enough to find! I simply wanted to help him in every way I could, and if there were things we could be doing to help him develop, why not?

Despite my chat with The Lady At The Park, we decided to go for it. (And after we returned from our first visit to see the Wizard, I called her and told her that my son no longer had Down syndrome. . . Oh just kidding. I have this kind of nerve in my dreams.) I am conflicted over whether we would do it again, though. All of the exercises are done at home by the parents and several are done multiple times per day. Part of me says it was really worth it, and part of me says that I nearly killed myself with compulsivity. You see, I am not really a type “A” personality (probably not even a B+), but I do enjoy a list. And I don’t let go until it is done. With this program, there is always a list and it is never done. So, if they could modify the curriculum (!) for parents who are somewhat compulsive, or if you can flush a list, I would tell you to do it. Just do it in moderation. I will tell you more about what the Wizard said next time.

Saturday, August 7, 2010

Wrestling Camp

Today N is at an all day wrestling camp. This is very exciting to him because he likes to wrestle his dad. And he usually wins. I saw a flier about this camp and showed it to my husband, who said, “Hmm.” That means, “Let’s not.” I noticed that it was for a wide age-range of kids, and I thought it might be a good introduction to the sport, so I pursued the idea. After all, there is a possibility that he might be able to manage his school’s wrestling team, so I figured he would need to know stuff about it. Like the rules and like how hard it really is. The only slightly unnerving thing was the liability release, which was pretty descriptive about what all injuries could occur, but we won’t go into that. (That whole atlantoaxial instability issue . . . recent x-rays showed N’s to be fine.)

I needed some things from the library the other day, so I took N and a friend, and we loaded up on books about wrestling (and other stuff). He impressed his dad that evening with some wrestling facts and rules. Ted shot a glance at me. I put on my angelic smile and did a praying hands gesture at him. Later, he sent an inquiry to the director of the camp, via email. Ted explained that N has Down syndrome, may be slightly too old for the camp, it could be full, etc., etc. He gave him every “out”, but the guy quickly replied that he would be happy to have him! (We have done this numerous times for various events, including a week long music camp at our local university, and have never been turned down.) I was nearly giddy because I knew that N would be.

Later that night we went to Starbucks, where we had some tasty cold drinks made by our favorite employee, Manly A. As we were hanging out, I heard Ted describing the upcoming event to N. “OH PLEASE, YES, Dad, PLEASE!!”. Ted smiled and said, “OK.” (Not “Hmm”.)

Thursday, August 5, 2010

And the Oscar Goes to . . . .

One of N’s biggest and most persistent fears is of insects. This is yet another area in which he has come a long way. Used to, he would go into full panic mode with the passing of a fly. I usually know if he has come upon an insect inside (whether dead or alive), because of his dramatic reaction and genuine, raw fear. We have brought many a spring al fresco dinner indoors, due to the mere sound of carpenter bees at work. He just won’t hear any reasoning about any of the bug population. I tell you this so you will appreciate his bravery in this tale.

We have had a wee problem with ants in the kitchen lately. First, there were the medium black ones who weren’t too fast. Then there were the “crazy busy” bigger black ones, which were harder to get rid of. They all love the sink area. Each time we get one group under control, another replaces it. The last I discovered were a tiny, pale brown species – in my saltine crackers. Now, hang with me while I segue once more. (And yes, I am sure they were ants.)

Last night I made lemon pie filling. Uh huh, just the filling. I had no desire to make a crust, plus I had little tart shells. They used up only a portion of the good tangy stuff, so today N. and I were looking forward to some pie filling. I needed something to “crust” it with, and after pondering, decided graham crackers would be perfect. We two were so happy with our luscious creation: graham crackers topped with plenty of lemon pie filling, plus Reddi Whip on top! Yes! Mine was about 1/3 eaten when my eye caught some movement in my yummy dessert. What was that? Oh, no! Couldn’t be. Not the pale brown ant. I am good at putting my head in the sand, and I ate another bite, willing it to be gone. Then I saw several. On my plate. Now I wanted to slam my chair to the ground and run outside, spitting and carrying on.

At this very second, I had a flashback of something most impressive that Meryl Streep once did. Supposedly, while she was filming “Out of Africa”, they were doing a long outdoor scene, and, in real life, she knew there was a big, horrible insect inside her blouse, crawling around. She carried out the scene perfectly, but the second the director yelled, “Cut!”, she jumped up and ripped off her top. (I love Meryl Streep. Always have. How on earth did she possess such self control?) So, back to my drama, how harmful are ingested ants? I don’t know. But if I acted at all perturbed by their presence, N would go beserk-o on me (and even if I didn’t, he would). Play like Meryl. So, go on eating? Take his away with a smile? No. He loves dessert more than he hates insects. Play like Meryl. “Oh. I am not sure, but I think I saw something in my pie that doesn’t belong there,” I said, in comatose fashion. Unalarmed, N. asked what it was. “Not sure, but I think it could be a TINY ant,” I heard my voice answer, with a yawn. Surprise of the decade comes next. “You know what they say—ants are protein,” was his response. Wha---? “I don’t see any in mine,” he said next. It is good to know he has some of my attributes, especially the head-in-the-sand one. Next came reality. “OH MY GOSH, I think I feel their little legs scratching down my throat!”, he said as he rose to medium panic. “OH NO, OH NO!!” and then he rushed to the sink where he began rinsing and gargling like crazy. Much, much better reaction than I could have ever hoped for. My self- restraint paid off (thank you, Meryl, for your example), and perhaps he was calmer because I was calm. In fact, I think I deserve an award for that. Meanwhile, I just wish I did not feel their little legs scratching in my throat as well.

Wednesday, August 4, 2010

A Little Tweak (but not a Tweet) to the Blog

Well, today I decided to reduce the length of my blog title and rename it. We are now at I had a little help from my 19 year old. Ok, a lot.

Sometimes I wonder where I would be without his technological influence and other influence—pop culture, etc. For instance, if it were not for him, I probably would not have fallen so hard and so deep into Lost. (Maybe not such a good example-- that was how many seasons without good closure?) He likes this social networking and he does it all; he Tweets, he blogs on Tumblr (which I am enjoying as a spectator), and who knows what all else. I am amazed and want to join the fun but feel like I need a class. I used to wonder what on earth I would comment on before I joined Facebook. Now I realize I have more than a few sentences to share!

After he helped me, we had a thought provoking discussion about social networking (and more) where I felt like I was the student and he was the teacher. I squirmed in my seat while he asked me some really good questions. Some of which, I need more time to think on! I told him that my purpose for this blog was mainly to encourage other moms of kids who have special needs. My concerns about exploiting his brother were quickly put to rest, and he emboldened me to blog for sheer self expression. He claims that this is an okay primary objective. Since this area is more of his world than it is mine, I think I’ll trust him on that. What a cool guy!

Tuesday, August 3, 2010

One Tough Cookie

Last night, after a wrestling match between my husband and "strong-as-an-ox" N, I was passing through the kitchen. N told me, "Your husband is one tough cookie." "Really?", I replied. "Yeah, but I can take him down in less than 10 seconds," said the cocky teenager.

Sunday, August 1, 2010

Cherished Art

Perhaps I should create a brag corner in case you would like to avoid it. Until then, I will shamelessly post it amidst the rest. When asked a few years ago what I would like for Christmas, the ever "holiday conscious" N. received my definite reply: "Original art by you". He quickly obliged after I bought the supplies. The result was a wonderful surprise that would be one of the first things to grab if my house were on fire. I was truly amazed when I tore off the paper and saw this. It hangs in my hallway and it makes me smile.