Saturday, October 31, 2009

halloween, wall-e style















Here's a picture of Danny in his Wall-E costume, which I am proud to point out, is 100% recycled materials. No money was spent in the acquisition of this costume . We had so much fun making it, and Danny actually wore it the entire time we were out, which totally surprised me, as it isn't the most comfortable getup out there. Granted, we only trick or treated for 45 minutes, but it was pretty cold out, and everyone was getting tired.

I would share pics of Charlotte, too, but I don't have any in which her face is covered, and I just don't feel comfortable showing my kids' faces here, since I use their names.

Wednesday, October 28, 2009

things I have learned from Danny and SPD

As October--SPD Awareness Month--is just about over, I thought I would write one more post about Sensory Processing Disorder. Lately, I have been looking at SPD in a more positive light, unlike in times past where I saw it more as a problem or a cross to bear. Though it has added a level of difficulty and challenge to parenting that I often feel unprepared for, I have realized that parenting a child with SPD has taught me many great lessons. Lessons which have made it easier to parent my other children and which have actually helped me enjoy life more. Here are a few of the major ones, in no particular order.

~~Slow down
We all know how frenetic life's pace can get, how full of activities, noise and commitments. I learned early on, though, that Danny cannot handle cramming a hundred and one activities in one day. I had to schedule my days so that we were only getting one or two errands done otherwise, he would have a really difficult time, which of course, made it very difficult, and thus not worth it, for me. He doesn't like to rush around from activity to activity, no matter how fun they might be. Instead, we need to plan for lots of down time.

And you know what? That has been an enormous blessing to my family, because I have realized that really, none of us in the Pancake house does very well when we are scheduled to the max. Also, we have had so many amazingly fun adventures just in the down time when we played together with nowhere else to be.

~~Think outside the box
Parenting a child with SPD is challenging in that your kid probably doesn't fit the mold of "regular kids." Before we knew what was going on with Danny, I scoured countless parenting books trying to figure out why my son would have meltdowns and what I could do about them. None of the books helped, because they were coming from the assumption that kids with meltdowns had discipline problems, whereas Danny's meltdowns were sensory related. Much of the advice given in the books actually exacerbated Danny's problems.

Once we understood SPD a bit more, we were able to help him, but even then we couldn't always find answers in SPD books, because each kid's SPD manifests itself in such unique ways. Instead, we had to get creative, wacky even. We would have regular wrestling matches with Danny and let him jump on our bed in order to get the deep pressure that he craved. We filled a sandbox with beans and kept it in our family room so Danny could get the tactile input he needed. I regularly let the kids roll around in funny foam (foam soap for kids) naked. And so often, a thought will come to me and we follow it, despite its seeming craziness, and it works. Both Bil and I are now much better at thinking outside the box in dealing with parenting issues that we are struggling with.

~~Power of prayer
I know not everyone reading this blog is religious, but I really feel like I need to say something here about prayer, because honestly, without it, I don't know how we would have survived the last few years. I won't detail every time prayer has helped me, because that would take way too much time. Suffice it to say, that there have been many, many times when, at my wits' end, I said a prayer. After the prayer, I would have an idea of how to handle the situation, and the idea was always something just a little bit out there, or something I wouldn't normally think to do in that situation. Whenever I follow that thought, though, it always works.

~~Trust my instincts
Trusting my instincts has never been my strong suit. I habitually second guess myself, especially in instances where my instincts oppose the popular opinion. I often defer to others and their opinion, thinking they must be right and I then must be wrong. Over the years, though, I have realized that my instincts are right. I know my kids. I know when something is wrong, and if I have a strong feeling as to how to help them, I should follow that feeling.

Time and again, this has been brought home to me, even by professionals. I will never forget an appointment with a developmental pediatrician in which she told me that not only was I right in not following some advice given to me by a caring friend, but that had I followed the advice, I probably would have done some damage--Danny most definitely would not have improved his speech, which was what my friend was trying to do, in fact, it probably would have backfired.

~~Honor our limits
Again, I am not so good with saying no to people. I am getting better, because being Danny's parent has helped me see that I need to respect his limits, as well as my own. This goes along with trusting my instincts, as well. Too often, I have said yes to an engagement despite feeling uneasy, and I have always regretted it. Others may think my rules are too strict or weird, but they work for us. For example, I will no longer let an activity or friends keep me from getting my kids to bed on time, and for us, on time is a very early 7:00 during the school year. I know most parents think I am crazy, but my kids fare so much better with lots of sleep (and frankly, so do I). We skip parties sometimes because I know it isn't worth it to get Danny all overstimulated.

~~Go with the flow
One Halloween we took Danny trick or treating at the mall. He was just over 2 years old and we thought he would really enjoy it. Well, Danny ran around the mall for a couple of minutes and then wanted to leave. For a brief moment, I wanted to try and convince him to stay. After all, we had come to the mall with friends and I thought it would be fun. Then, it occurred to me that the point was for Danny to have fun, not me. If being in an overcrowded, noisy mall was hard for him to deal with, then what was the point in staying? So, we left and had a great evening at home with a well-regulated, happy child.

This lesson has not been an easy one for me, but I have learned that it is so important to be flexible. Bil regularly outlines what he calls our "escape route" when we go to parties, which is our plan for how long we will stay and what we will do to make it easier for Danny. And if all else fails, we have a little signal which says that it is time to leave. Because parties are not much fun when you have an overstimulated little boy. Though I have had to miss some fun parties, it has been worth it when we honor Danny's needs. And now that he is older, we have a lot easier time in big groups.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I can't really say that I am grateful that Danny has SPD. It is hard for me to see him struggle. Still, I am so grateful Danny is my son. I love him so much and he has taught me a great deal, so many lessons that I need to learn and relearn in order to be a better parent, a better wife, and a better person. And I am so grateful that I have gotten to the point where I can see that SPD is not a curse so much as it is a challenge. A difficult one, but one that can teach us so many great lessons, if we let it.

Sunday, October 25, 2009

SPD Awareness Month and a Message of Hope

The month is already half over and I have yet to write a post about SPD Awareness Month. I have tried to think of topics, but have come up dry. I just haven't felt that motivated to write about SPD. Perhaps I burnt myself out last year with all the SPD-related posts. I'm not sure.

This past month, I have been thinking of the progress Danny has made. For any of you who don't know our story, Danny was diagnosed with SPD 4 years ago when he was 2 years old. Since then, he has been receiving Occupational Therapy, along with other services like Speech Therapy.

A couple of weeks ago, I took Danny and Charlotte to a candy hunt at a nearby park. It was completely dark, with just the light of some flashlights to guide us. We had a great time, and as we traversed the park full of kids and their parents, I realized that a year or two ago, I would have never taken Danny on such an excursion. I would have been too unsure how he would handle it.

In the past, we have avoided so many social activities, especially those that involved big groups of people or lots of noise. In those settings, Danny has a tendency to get overstimulated, which often means he acts really hyper and sometimes aggressive. He used to sometimes even have seriously horrible sensory meltdowns, which nothing seemed to ease. Thankfully, those have completely disappeared.

So many situations that Danny found almost impossible to endure a couple of years ago are now completely manageable. He has no problem going on multiple errands with me and rarely gives me any grief when we have to leave a fun place. Years ago, I used to dread going to the park because I knew leaving would result in horrendous screaming and kicking and flailing of limbs. He no longer seems to need picture charts and countdowns of how many minutes before we leave, etc. Danny's speech has improved tremendously and continues to do so. He is doing really well at school and his music teacher just told us this week that Danny is one of her favorite children. He is excelling in her class, which is another miracle. In the past, music used to be a wild card; we never quite knew what effect it would have on him, but it was often a negative one. Now, not so much, though he still seems to have a limit as to how much music he can listen to in one sitting.

He still has SPD, of course. I don't actually think kids are cured of this disorder, but it is definitely getting under control, which is something I never really believed could happen. It just seemed so difficult and his challenges too insurmountable to fix.

So, this is my SPD Awareness Month message: there is hope. It does get better! It really does. Not overnight. No, definitely not overnight. It will take a lot of time, numberless prayers, and levels of patience that will probably qualify you for canonization. It will take so much work, so many appointments with therapists and professionals. It will take amazing amounts of creativity and research, but in the years to come, you will see results that will have made it all worth it. So, hang in there and keep working. You are not alone.



Friday, October 23, 2009

Reason number 101 to sweep the kitchen floor once in a while


So, when your son loses one of his front teeth, you don't have to spend 35 minutes combing through the debris and detritus that has accumulated on the floor since yesterday to find the tooth. It is amazing how difficult it is to distinguish a baby tooth from Rice Krispies, pieces of rice teething biscuits and popcorn kernels. Who knew?

If it weren't for the fact that although Danny has already lost four teeth, we have yet to place one under his pillow for the Tooth Fairy, I would have given up the search. Unfortunately, Danny swallowed the first two teeth he lost. Then, the third one, he placed under his rest time blanket at school thinking the Tooth Fairy would find it there. Yeah, he wasn't too pleased with her when she dropped that ball. And the fourth tooth? I lost that one.

What? They should so make those teeth bigger. I'm just saying. Way, way too easy to misplace.

So, we are batting four for four and I am hoping to make up for it tonight. Luckily, after many prayers and yelling at the kids to stay away from the dust pile, I was was able to find the dust-covered little tooth. The way we are going, the beloved Tooth Fairy probably owes Danny a fifty. What is the going rate for teeth nowadays anyway?

Thursday, October 22, 2009

I hate when exercise is the answer

I recently saw a book with this title and laughed. I can so agree with that sentiment. It's absurd, actually, because it seems obvious that in order to lose weight, one needs to exercise and eat sensibly. That doesn't seem too difficult (in theory) yet it amazes me the lengths some of us will go to in order to lose weight without following that formula.

This was brought home to me this past week when I heard about the hCG diet. I was interested, because not only are you supposed to lose a pound a day, but it requires no exercise at all. What it does require is daily injections of the hCG hormone on top of ingesting only 500 calories a day. No wonder there is no exercising recommended, with that caloric intake you'd be lucky to have enough energy to sit up.

I never seriously considered this diet, but it did interest me. Who wouldn't want to be able to lose 5 pounds a week? Still, it seems ridiculous that I would even think about suffering through near starvation and daily injections, but don't feel like exercising daily and eating sensibly. What was I thinking? How could the hCG diet be any easier than just eating healthful foods and moving more? Why are we enticed by these quick fixes that are too good to be true?

Saturday, October 17, 2009

You can take the girl out of the city......

I grew up in Chicago, not the suburbs, but the actual city. As those of you who have spent much time with me know, I take pride in that fact, probably a disproportionate amount of pride, but most Chicagoans do. All my life I have considered myself a city girl, and when we relocated to the town in which I now reside, I didn't know what to think. I was used to more diversity, better restaurants, and lots more people. And I was used to a much, much different accent. Let's just say those Super Fans (you know, the "Da Bears" guys) on Saturday Night Live sound eerily like my twin brother. Seriously, he says the word "tree" when he means "three." And here? Yeah, they sound like we live in the south rather than the Midwest.

My family jokes that I moved to the country, even though our town has a population of about 20,000 people. I grew up thinking, after all, that Chicago was the only big city in the state of Illinois. Even our illustrious former governor (Rod Balgojevich) acted like Chicago was the state capitol.

Surprisingly, I have really come to love this smallish town. I love the people and even the laid-back attitude, though it is still one I find difficult to emulate, especially in traffic or while waiting for the cashier in Wal-Mart to quit talking to her 5th cousin twice removed so she can check me out already.

Ahem.

The other day, though, I noticed some signs that indicated that perhaps I was becoming more of a country girl than I thought.

Behold the view of my front yard, for example:
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You know you are no longer in the city if you have a large flatbed trailer sitting not just in front of your house, but on your actual front lawn. Doesn't get much more countrified than this, unless......













you happen to have a big, rusty tractor in your back yard, which we do, of course.
And it gets better.....













Our kids have taken to playing for hours on the flatbed trailer and the logs that are all over our yards.

Convinced yet that we are no longer city folk? If not, the following picture should cinch the deal.













Yes, yes, in fact, my kids often run outside barefoot to play on the trailer.

I won't even mention that Danny routinely pees outside, because that would just be showing off.

Friday, October 16, 2009

help

I need some advice here, people. Please help me!

Lately, when Danny has come home from school, he is so riled up and overstimulated I just don't know what to do with him. He has hurt Charlotte pretty badly at least twice this week and even hurt little Tommy when he decided it would be a good idea to pick Tom up, carry him down the hall and deposit him on the bed, which Tommy promptly rolled off of. It was an accident, but a direct cause of Danny being so riled up; he has even less impulse control when stimulated. I'm sure it has something to do with the incessant rain of the last couple of weeks. He hasn't been able to go out for recess and we haven't played outside after school, so he probably has a lot of pent-up energy.

Obviously, I need to figure out what to do with the kid as winter is fast approaching and I cannot handle the hyperactivity and intense sensory seeking for much longer. Do any of you have similar issues with your kids? What do you when you can't get them outside? Help, please!

Wednesday, October 7, 2009

Regret

Last night Bil called me from work with some terrible news. He had contacted his old friend from college and found out that Richard's wife had died. While Bil was in college he spent a great deal of time with Richard. They were in most classes together and collaborated on many projects, including their very ambitious senior project and their movie for film class. They really enjoyed working together and shared a similar sense of humor, which is pretty amazing since Bil's humor is pretty quirky.

Eventually, the two of us couples started hanging out. Every so often we would meet for dinner, and Juliana even spent some time trying to teach me how to knit. We had a lot of fun together, even though we never could find enough time to hang out as much as we would have liked. And that was before kids, so you can imagine what happened after Danny was born.

Then, we moved from Chicago to the town we live in, and I gradually lost touch with Juliana. The thing is, even after they moved to Scotland to be closer to her family in Germany, she tried to keep in touch, but I was so overwhelmed with motherhood and daily life, I never made the time to email her. I have been thinking about her and wanting to get back in touch for months now. I even have their change of address sitting on my desk waiting for me to get off my duff and do something about it.

Now it is too late and I will never again have the opportunity to talk to her. At least not in this lifetime.

I feel so bad for Richard and their one-year-old son. I cannot imagine losing a spouse at such a young age. I wish I could do something for them. But, most of all, I am consumed with a tremendous regret at my own inaction. I am so sorry that I let a friendship die out of laziness on my side. I just kept thinking that I had all the time in the world to reconnect. And I guess I am angry with myself that I didn't prioritize better. It would have taken just a couple of minutes to write a letter or email. I'm sure there were thousands of moments over the last few years which I squandered and could have put to better use.

I know there isn't much I can do now. Juliana is gone and I hope she understands that I am truly sorry for losing touch. I liked and admired her so much; I just didn't make the time to keep our friendship going.

I want to remember this, though. I want to start living my life differently, start focusing on the things that are most important to me: my relationships. In a church meeting last week, a leader said that we are the most at peace when our daily actions reflect our governing beliefs and values. I don't think mine do. Unless my governing values have much to do with laundry and cooking and cleaning. I know some of those things are important, but I want to make sure I really pay attention to the people I love and give them my time and focus. Because I do not want to feel this kind of regret again when I lose someone I care about.

I wonder if you have any suggestions on how you prioritize your relationships. What do you do to make sure you are focusing on important things rather than letting trivial things monopolize your time? I could use the suggestions.

Friday, October 2, 2009

someone pass me the chocolate cake--I just had an IEP Meeting

I hate IEP meetings. I really, really do. The night before, I get a little nervous and just a touch nauseated at the prospect of sitting at this big table with a whole squadron of professionals who are there to list all the ways my kid is different from "normal." I know it is a touch illogical. After all, every IEP meeting I have attended has gone well. I have never been surprised by anything any teacher or therapist or psychologist has told me. I see the same delays and "deficiencies" in Danny's development that they do. And I have never had to fight for services as I know many parents do.

Still, I find myself in tears in the car after each and every IEP meeting. No matter how encouraging the teachers are, no matter how thorough we are in developing accommodations to assist Danny in his learning, I still come away feeling depressed.

Today, I realized that part of me, on some level, must have thought that by kindergarten, Danny would have totally caught up. I think I assumed that at this point, Danny would no longer need special services. Obviously, I need to change the way I think on this matter. I need to accept that he may struggle with some of these issues for the rest of his life. And you know what? That just sucks. It really, really does.

I know that it isn't the end of the world. I know that none of these labels or challenges change who my son is. I know that everyone struggles with different issues. We all have challenges. I know that these challenges don't define who he is and that he might just be OK. But sometimes those rationalizations just don't help me feel better. They don't always allay my fears for his future--both academic and social. They don't make it any easier watching my kid struggle with things other kids pick up with no help at all.

And though I know that life is not fair, I still occasionally feel a deep sense of injustice that my kid has these problems at such a young age.

On the way home I thought about why I struggle with IEP meetings. I wondered what it would take for me to come away from one without crying. And I realized that it would take the staff telling me that Danny no longer needs services. The meeting in which they tell me I no longer have to attend IEP meetings will be the meeting I come away smiling. Because though Danny has progressed and come such a long way and made enormous strides, I think I will always feel just a bit sad over all that he has to overcome.

And frankly, I am sick to death of people (no matter how loving, good intentioned, and knowledgeable they may be) telling me how different Danny is or what he needs to work on. I am so tired of evals and recommendations and accommodations and special ed crap. I just am. And even writing this makes me feel guilty.

I'll get over it. Don't worry about me. I just need to vent. And maybe spend some good quality time with the kids tonight playing games and making pigs in a blanket. That should cure my foul mood.....

Oh, yeah, that and a giant piece of chocolate cake with tons of frosting.