Friday, October 31, 2008

Happy Halloween and other stuff

These are some cupcakes I made for Danny's class party today. Actually, this is a picture I found on google, but they look exactly like the ones I made. Bil taught me how to download pictures from the camera onto the computer, but I can't remember how. I know, pathetic. I have also forgotten how to burn a cd. I think the problem is deep down, I know Bil will always do these technical tasks for me, so maybe I don't really attend to his lessons. Terrible, I know, but not much different than he is about domestic chores and keeping track of the kids' doctors, shoe size, etc., right? I like to think of it as job security or maintaining our symbiotic relationship. Whatever.

Anyway, I will have the winners from my giveaway posted tonight or tomorrow. Bil is helping me make my final choices. There were so many good entries, I am having a hard time deciding, which is nothing new for me. I have, however, decided to choose more than one winner. The grand prize winner will receive a brush, along with some other goodies, while the runners-up will get a smaller prize, but one that will definitely include one of those brushes. Thanks to everyone who posted a comment. I guess the way to get more comments and readers is to give stuff away.

Tuesday, October 28, 2008

word to the wise

A while back Charlotte was in the bathtub and kept pointing to body parts and naming them. She pointed to her privates and said, "This is my booty, mommy." For some reason, I decided to be pedantic and told her the real name of her privates, not thinking of the possible implications for me. First, she started going around the house, telling anyone who would listen, "This is my vagina." I thought smugly of how precocious and smart she is and patted myself on the back for not being embarrassed to give things their proper names. Then, she started randomly inserting the word "vagina" into sentences, such as, "Look, I have a vagina car."

Somewhere along the line, she also learned the word "penis," so now she can point to and label everyone's privates in the family. Just yesterday, as I was using the facilities, Charlotte ran up to me, bent down and peered between my legs and proudly announced, "Mommy, that is your vagina!"

Anyway, it has gotten a bit more complicated now that she is not afraid to say these words in public. The other day, in the public bathroom of a store, she said, "Mommy, you are going poop" (which I WASN'T!!!) and "Look, there is your vagina."

I am getting a bit worried because yesterday after a particularly wet diaper, I blew on her to dry her off and she said really loudly, " Mommy, don't pinch my vagina" repeatedly. Of course her pronunciation is impeccable, so if anyone were to hear her, they would have no doubt as to what she is saying. Thank goodness the windows weren't open or I would have been reported to DCFS...

So, a word to the wise: be careful what words you teach your child. If they happen to have any potential to be embarrassing to you, as the mother, then really think twice about teaching them.

Friday, October 24, 2008

Contact lens wearers, beware!

I am so angry, I could scream. I called a couple of weeks ago to order my new supply of contact lenses. I have been wearing contacts since junior high. When I lived in Chicago, all I had to do was call my doctor every year and he would order new ones for me. Every 5 years or so, they would require that I come in for a check-up before ordering new ones. Seemed entirely reasonable to me.

Not so anymore. Apparently, a new law has been passed this year which requires contact lens wearers to get a check-up every single year before getting their prescription renewed. I was furious. I do not need a check-up that often--if you wear glasses you only need to go every two years. Why the discrepancy? Accoring to my family doctor and articles I have read, you really only need eye screenings (for glaucoma, etc.) every 5 years. Plus, I happen to be pregnant which is exactly when you don't want to be changing your prescription. All those hormones can actually affect your vision for the better, but it doesn't always stay that way, so experts advise not changing your prescription until all the hormones have gone back to normal.

I thought I could get around this ridiculous law by ordering my contacts online, but the greedy doctors have even covered that avenue. Before you can order your contacts, the website has to contact your doctor to make sure your prescription has not expired. So, the only way I am going to get new contacts is to give in and spend $100 for a check-up that I do not need.

I am irate. I just don't think the health field should be allowed to gouge patients this way. The doctors are only forcing you to spend more money and it is so unfair. It has nothing to do with our health, but everything to do with the money they want to make. As if they don't make enough with their overpriced check-ups and glasses frames. I think I am going to start writing letters to politicians or something.

I am definitely considering switching to glasses, since I don't have to pay anything at all for that. I just am not that thrilled with how I look in them. On the other hand, they do seem to mask the crow's feet I am developing, so there is that....

Another SPD giveaway!

There is another SPD giveaway in the works and it is even better than mine (but, still enter mine, please!) Kia, from Good Enough Mothering. She is giving away 5 copies of the book Megan's World which is by a mother and her daughter who has SPD. So, go check it out and enter the giveaway. Now. Both my giveaway and Kia's end next week (mine on Thursday, Kia's on Halloween).

Wednesday, October 22, 2008


As the month starts wearing down, I just want to remind you about the SPD giveaway that I posted last week. Please feel free to enter the giveaway at the above link and tell your friends about it too. Also, if you have not yet read my previous guest post by Erin, please do so. Her story is really interesting, even though we did need to condense it a bit. I think her words are very helpful to parents of children with SPD. She can tell us a bit about what they might be going through.

I think this may be the end of my SPD posts. I may do one more with some book reviews, but I am running out of ideas. Thanks to everyone who posted about SPD on their blogs and to those who visited mine. I think at least a few more people have learned about SPD this month. And that's a good thing! I will post the winner of the giveaway on Halloween.

Monday, October 20, 2008

"Yikes, magic!"

I need a break from all things SPD and this topic has been on my mind since Thursday when I received an odd email. First of all, let me please give this disclaimer: I am not poking fun at anyone's religion. I staunchly believe people should be allowed to worship as they see fit.

OK, so onto the email. I belong to MOPS (Mothers of Preschoolers) which gets together twice a month to socialize and ostensibly to offer support to mothers of small children. It is supposed to be a non-denominational group that promotes Christian values. Well, the group had planned a "Fall Ball" for Saturday for the whole family to attend. They had food planned and hay rides, etc. and it promised to be fun for all.

On Thursday I got an email elaborating on the magician that was supposed to be coming to the Fall Ball. In the email, D said when she heard there was going to be a magician, she thought, "Yikes, magic!" and assumed many others felt the same way. She then put everyone's fears to rest by assuring us that the magician was a Christian and that he would start his act by informing the kids that there is no such thing as magic. He would talk about God's miracles and then end the show with a discussion of the Plan of Salvation, which I assume means he would talk about Jesus coming to save the world. She concluded by saying that they wouldn't be exposing the kids to any voodoo.

I was baffled by so many aspects of this email. And please, anyone reading this who can shed some light on my questions, let me know. First off, are there really people out there who think "Yikes!" when the hear the word "magic"? What could possibly be so scary about a magician performing for kids? I believe in God quite fervently. I pray, go to Church, etc. but I have no problem with my children believing in magic. To me, it is the same as kids believing in Santa Claus and the Tooth Fairy. What is so dangerous about a couple of card tricks and pulling a bunny out of a hat? I don't see at all how this could undermine a child's belief in God or Jesus. What am I missing here?

To be honest, I wasn't quite sure how I felt about some stranger (whether Christian or not) informing my child that magic doesn't exist. Isn't magic what childhood is all about? I love to see the looks of wonder on my kids' faces when they see something unexplainable. Why would I want someone to come along and squash that in my kid at the age of 5? It won't be long before he starts to feel disillusioned about so many things, why force it sooner?

Another problem I had was that the author of the email (and presumably other leaders of my MOPS group) equate magic with voodoo. Why would anyone assume that magic and voodoo are the same thing? I just don't understand.
Maybe there really is dark magic out there and voodoo, maybe I am just naive because I have never encountered it myself. But, I guess I am more worried about real evils that I hear about on the news: child pornography, child molestation, rapes, etc. This magic thing seems like a distraction from the real evils out there. I am more worried that the magician performing at a party is a pedophile than I am about my kids believing in magic.

Like I said before, I don't mean to belittle anyone's beliefs. I have just never encountered anyone who was so freaked out about magic before. Since moving to this smallish town 5 years ago, there are just so many religious issues that I have come into contact with that baffle me. Another one is the crazy controversy over Harry Potter. But, I suppose that is fodder for another long rant/post.

Living with SPD--Erin's Story

This is a guest post from Erin, who is an adult sufferer of SPD. She was gracious enough to tell us her story and how treatment has helped her. Thank you, Erin!

Going back into early childhood I always knew there was something different about me, but I never could put my finger on exactly what it was. As a child I was completely content to spend two or three hours in the pool bobbing up and down, up one end of the pool and back. I didn’t know anybody else who felt compelled to eat erasers, and long past when everyone had learned to sit in their seats I was still tipping mine back. I will never forget the time I took it too far in third grade and there I lay, sprawled on the floor in my chair with the desk and the contents of the desk digging into my stomach looking up at my teacher who was looking down at me with her hands on her hips shaking her finger and saying “I told you that would happen one day Erin and I hope you have learned.” I was mortified, but not enough to quell the urge to tip back my desk, and the next week I tipped it again.

I felt compelled to do these things and though I hated the chastisement and knew that I should be listening to what I was told, I couldn’t stop myself. I was labeled as a behavior problem and treated with disdain. This was a major contributing factor to my low self-esteem and depression starting in 3rd grade when I was around 9 years old.

I was diagnosed with Attention Deficit Hyperactivity Disorder in 3rd grade, and while I still carry the diagnosis, and take medication for it daily, my ADHD is a co morbid disorder my SPD, and only a piece to the puzzle. The difference between ADHD and SPD is when an SPD child gets the input they crave, they feel more modulated and quit seeking it. In ADHD it is more about impulse control and these children tend to do it because they don’t have the restraint to stop. I have pieces of both; lack of impulse control and sensory seeking.

Finally when I was 22 and still hadn’t outgrown completely many of the concerning behaviors someone noticed that there was more going on than the ADHD alone, and I was diagnosed by an OT with SPD. I received 6 weeks of OT with a therapist who had no clue about the nuances in the differences in treating an adult versus a child. Since SPD is considered primarily a childhood disorder many of the OT’s trained for Sensory Integration Therapy do not have the training to adjust the therapy to meet the different neurological systems, sensory needs and preferences of adults. I was dissatisfied because I learned very little about myself or how to deal with SPD, made very little progress in establishing a baseline, and virtually no progress in making and reaching therapy goals. In fact I didn’t even know what my goals should be. I was quite discouraged and disgusted with my treatment and resigned myself to the fact that “this is as good as it gets.”

Then when I was 24 I decided to take a plunge which would change my entire sensory related future. I entered college with the goal of attaining my Bachelor’s as a Registered Nurse. I quickly realized that to be as successful as I had the potential for I would have to seek more treatment for my sensory symptoms in the classroom. With the fluorescent lights, the ticking clocks and my need to keep moving, I could barely focus on what was going on with my instructors. I was in the beginning of school taking some very easy introduction courses. There was no way I was going to make it through some of my specialized classes if I didn’t do something.

I began calling around to OT’s in my area to find some meaningful therapy that could make a difference in my life and allow me to be successful in school. After calling around to many local clinics and hospitals I finally reached a receptionist who informed me that the hospital might have an OT who would be willing to treat an adult with SPD. I waited for a call back from a woman named Denise and wondered if it was to be another dead end. It was a long wait. But she did call back, and what’s more, she told me she was comfortable treating an adult! I was in!
I showed up for my first appointment on a Monday afternoon in February. I was one and half hours early, even though the hospital is only about 10 minutes from where I lived at the time. I knew that I got lost easily, couldn’t really read a map, and I wanted a chance to feel out the place before I threw myself in (all common adult sensory symptoms). After sitting in the horrible waiting room for 1 ½ hours I was already feeling “fried” (my Pre-OT word for dismodulated or overstimulated), and I was a bit anxious not knowing what to expect of and from my first appointment with Denise.

My intake was awful. I had no tools to deal with the overstimulation that I was experiencing, or even a clue that it was not normal to feel the need to burst into tears or go to sleep. I had only a vague understanding of what SPD did to my body at the time.

At the end of the intake she told me that I qualified for services. I was now scheduled to start therapy on Mondays at one every week. It was very difficult for me in the beginning. I began most sessions on the swing and then moved onto my Sensory Diet. I left almost every session with a sense of peace and calm that I had never felt before despite how hard I had worked in my session. I remember wondering at one point if the peace and calm were what it felt like to live without SPD.

Progress came quickly and in leaps in bounds. The first difference that I really noticed was when I was horseback riding. One day I realized that I felt secure in the saddle and not like I was going to fall off the horse at any given moment. I gained confidence, and as I rode harder I was able to get more sensory input riding as well. Then I noticed that I was sleeping better, and I felt rested when I woke up. My horrible nightmares had slowed down and I was rarely waking up in a complete panic unable to function. I was falling asleep in 10-15 minutes instead of 3-4 hours and sleeping through the night. I had more energy and I was more focused and organized in my life. School was becoming easier to handle by the day, and I was really enjoying some of my more difficult classes, and making it through 4 hour classes! I was gaining core muscle strength and had moved up to 5 lb weights for my arms. I was walking around 5 miles a day with weights on my ankles and wrists and I was enjoying the input. I followed my sensory schedule, and I spent a lot of personal time accentuating what I had learned to add to my repertoire of skills.

I am now enjoying my days again. I spend much of my day working on my Sensory Diet, but the time put into it doesn’t seem to hinder my progress in other areas of my life. I am going to school full time and I am very involved in the online SPD community. I am moderating on two different forums for others out there seeking information and treatment for SPD. I have time for my family and friends and I enjoy and anticipate time spent with them. My horseback riding is going well, and I have been told several times what an “amazing rider” I am.

It sure feels amazing… all of it.

Friday, October 17, 2008

SPD Awareness Month Giveaway!

I have been brainstorming ideas for the rest of October to get the word out about SPD and I came up with the idea of a giveaway. It helps that I just recently received a package from Southpaw and in it were 12 of these:

It is a Wilbarger brush which you can use to administer the Wilbarger Brushing Technique. Have any of you tried this? Well, my sister swears by it, so I ordered the brushes not realizing just how many brushes come in a package. So, I am going to share my bounty with one lucky reader. And if you don't do the brushing technique, never fear: these brushes would be great for just some fun tactile activities.

I am also going to include a small container of Theraputty and some other fun sensory toys. And never one to neglect the champions of these SPD kids, I will include goodies for an overworked mother (some peppermint foot rub, anyone?).

So, here are the rules. All you have to do is reply to this email by Thursday, October 30. The winner will be announced on Halloween. In the reply I would love it if you would share the weirdest activity your kids like to participate in that is sensory-related. For example, if it were me, I would tell you how my kids love to strip down naked and have me spray my yoga mat (which incidentally, is never used for yoga anymore) with shaving cream. They then proceed to slip and slide and roll around in it to the point where the kids are literally covered up to their necks with shaving cream. They look like they are wearing wet suits.

Or you could also share the wackiest mess your child has made. C'mon, I need a good laugh and I need to know I am not the only one out there who went through a phase where her kid smeared Butt Paste on his face repeatedly. Seriously, I got to the point where I could smell Butt Paste through closed doors and I would know that Danny had somehow managed to sniff out our hiding places for the stuff. And that stuff ain't cheap! Did get some great pictures, though.

I will have my husband help me choose the lucky winner, who will then need to send me his/her address. Please spread the word. I would love to see a lot of comments for this SPD Awareness Month giveaway. Thanks! Who knows, if I get a lot of responses, maybe I will give away more than one prize.

Thursday, October 16, 2008

What I wish people knew about SPD, part 2

Thanks for all the great comments on our previous posts. And thanks to my guest bloggers, too. It seems like there are a lot of people posting about SPD this month, which is really exciting. I hope you guys aren't sick of hearing of SPD yet. I still have a couple more posts in the works. But, I promise to go back to regularly scheduled programming (which is mostly me whining about life, really) next month.

6. There are a lot of great sensory activities that are good for all kids, whether they have sensory problems or not.
The more I learn about SPD, the more I wish I had known this all sooner. Not just for Danny's sake, but for the sake of my high school students. I wish I had known how important movement is to learning, how it helps people, not just kids, to focus on difficult concepts. Also, adding a multisensory approach to teaching kids of all ages can help you reach kids who may learn a bit differently than the "average" kid (which, in my experience, includes many, many kids, not just those with special needs. These are the kids who learn better with hands-on experience or who are more visual learners, for example.) Anyway, I am hoping to have a post that specifically addresses this issue and that gives lots of great activities to do with kids. I have asked a couple of people to contribute, so stay tuned for that post.

7. Look for their strengths, not just their weaknesses.
This is something I often forget to do. Some days I am so focused on what is going wrong that I forget to look at how far Danny has come. And because he has difficulty in many areas, such as communication, it is easy to overlook his many strengths, like his amazing visual memory, his exuberance and love of life, his sense of humor, and how he protects and looks out for his little sister.

8. Ask questions.
I know you may feel awkward, but please ask questions. I have a friend at church whose daughter has been a bit scared of Danny. She is a rather timid little girl and an only child. She is not used to roughhousing of any kind and Danny makes her nervous. Sometimes he is a bit rough. Other times, it is not that he is being rough with her, but just that he is running and playing so hard she worries that he might run into her. Anyway, her mother asked me some questions so that she could better explain to her daughter why Danny did some of the things he did. She also asked me for tips to make her daughter feel more comfortable. It actually made me feel really good that L could ask me these questions. To me, it showed that she wanted to help her daughter understand Danny and help their friendship grow. It proved that she cared about us and wasn't going to avoid us just because they had a rocky start. Plus, I could tell she was not at all judgmental.

9. Give the kid space.
This one is so important, I should have put it first. Also, I think this probably applies to most kids. When Danny is upset, the last thing he wants is someone in his face trying to talk him out of his feelings. It makes sense. How would you feel if you were really crabby and your husband, who understood nothing of what had happened, just told you to get a grip and get over it? Sometimes kids just need some time and space to deal with their feelings of frustration and disappointment. A well-meaning man at Church is constantly lecturing Danny when he is struggling. This man typically has no idea what precipitated the problems for Danny, but that doesn't stop him from basically arguing with my son about why he should obey me.
The other side of this is many kids need literal space. Danny doesn't like people touching him a lot, especially strangers and especially if they haven't asked him first. This he gets completely from me. He doesn't like to be in a crowd with people pushing up against him; another trait he inherited from me. So if a child bristles at your touch, be sensitive to the fact that he/she may need some space.

10. Respect the kid and his boundaries.
The longer I am a mother, the more I realize that we expect some pretty crazy things from our kids sometimes. I have often been amazed at how often a parent will expect their child to do something they themselves would never do. A prime example of this is kissing. How many times will a parent practically force their kid to kiss a relative or friend, often someone the kid doesn't really feel comfortable with? I have done this myself and I really regret it. I would be livid if someone tried to force or guilt me into kissing someone with whom I was uncomfortable. There are many examples of this, but I won't go into it here. I guess my point is, let's show the kids some respect. It goes a long way towards helping them cope with life and learn how to respect others.

Thanks for indulging me here. Please feel free to share what you wish people understood about kids, those with special needs or not.

Tuesday, October 14, 2008

A Father's Take on SPD

Hi, this is Bil (Patty's dh)-- honored to be a part of this guest blog on Pancakes Gone Awry..."to those who would suck the marrow from life, come and partake..."

I think what I need to talk about here is how my son's SPD has affected me.

I think Patty has already explained about how she 'figured it all out', and it may not surprise you that she was much more accepting of the diagnosis than I was initially. We would debate it frequently and I kept reverting back to anecdotal information I had heard about children who later became normal functional adults, but just didn't speak right away. You see, the biggest indication to us that Danny had a problem was that he wasn't speaking. At all. An old supervisor of mine at the University of Chicago, was one such example...he didn't speak until about age 4.

My attitude was that we should never expect children's mental/physical development to fit into a 'linearly progressive' model, the same way some doctors try to fit childbirth into a linearly progressive model. (It just doesn't work that way, you don't dilate to a 3 at 3am, 4 at 4's more like all of a sudden after 25 hours of no progress, you go from a 3 to a 10 in 60 minutes and it's time to push. It's totally unpredictable.)

I admit, there's something very male about having unreasonable expectations for my first-born son...not as unreasonable as expecting him to master Calculus at age 6 (like John Von Neumann), but I admit I just never expected him to have problems. I think after my initial doubts, what convinced me was meeting and speaking directly with Danny's OT. At the time of the visit, I had my mind open to the possibility of SPD, but somewhere I was still fully armed with mental reservations. If I wasn't convinced beyond a reasonable doubt, I would have to politely refute the claim... it is an unwritten law that I get to default to the "Bad Cop" role when there is an insistent telemarketer or door-to-door salesperson; Patty is sometimes too nice or reluctant to deliver the graceful blow, whereas I sometimes relish the opportunity to do so for an especially pushy specimen.

I was very hopeful that Linda would not make a strong case for Danny having some dysfunction... I would convince Patty of the holes in her theory, and we could go on with our lives and difficulties. Fortunately, Linda didn't even have to make a case: what convinced me was she had such a grasp of the condition, that she could tell us things about Danny, detailing difficulties that we faced daily that no one else would have known about so intimately; she even was able to put her finger on other difficulties that we couldn't even describe in words. To say the least, it was both enlightening and scary; we now had a new dimension of Danny's world to consider that was completely hidden to us before. While it was difficult to accept, I think finally embracing his condition was very liberating, in that Danny's behavior could be understood and we could use this new knowledge to help and empathize with him.

Patty is Danny's champion empathizer. It amazes me how much in tune she is with what Danny needs, additionally evidenced by how he trusts her so much in return. Her ability to calm his shattered nerves, and bring peace to our home in difficult times...Patty is a real blessing and inspiration to me.

So what do I bring to the family? Usually, I bring the Bad--er.. the 'Dad' Cop. The Dad Cop helps keep the balance between Good and Evil, Order and Chaos, Mania and Exhaustion.

1. At a family get-together, the Dad Cop says "Danny has had it, and we need to go home now."

2. Dad Cop says, "We've loved having you all over, but now we need to play with our kids before bed... (Please disperse, nothing to see here...)"

3. He says, "No, you have to eat some real food before we eat Popsicles."

4. He says, "You're acting out of control, you need to stay in your room until you are ready to stop pushing other kids."

5. After Danny has paid his time-out debt to society, Dad Cop calmly (usually) explains to him how society expects him to behave if he wishes to remain a free citizen.

6. During OT Therapy in the home, he helps to push the envelope a little bit at a time-- "Come on, I know it's hard, but I also know you can do it."

7. He initiates some serious 'roughhousing' and impromptu wrestling rematches on the master bed -- duck for flying pillows! Avast Ye! Ooof!

8. Sometimes he has to use tickle torture (to get information) but not too much...

9. Dad Cop has to be a good example of serving the public trust; he has to do a 'time-out' when he gets out of line (maybe too much tickle torture) and has to apologize later.

10. Dad Cop always needs to back up his partner. He jokes, "Honey, you look totally guilty of enfrazzlement. I hereby sentence you to the comfy chair while I finish sweeping/cooking/the dishes/disciplining/insert chore here."

Thanks for indulging me and my little list-- I know... I am a real dork, but I think that's why my family keeps me around. At home, you get us all together and we are a buzz of non sequitur mayhem, and the kids love it, especially Danny. We are so much alike, he and I, we both like to talk in funny voices, we act out movie dialogues, (I catch nearly all of his obscure 'references' and inside jokes, and 'translate' for Patty,) we hate shopping for clothes, and we LOVE putting excessive condiments on our food. As tempting as it might be for me to wish away his problems and difficulties, there's no part of me that could bear to take away any component of him for fear he would wind up any less of the wonderful person that he is... I love how empathetic, protective and kind he can be with his sister and his friends. Danny has demonstrated his sharpness and cleverness, has a near photographic memory, and he outsmarts me to shame continually...I only wish that I could know his thoughts, and know best how to communicate with him at his level. (I'm always trying to reason with him the same way I do with an adult, and it really taxes his patience.)

In closing, I want to let Patty know how glad I am that she trusted her instincts and got help from an OT when she felt something was wrong. I don't think I ever would have come to the same conclusion, or conceded that we needed help with Danny. There's just no telling how our lives would have been had we not taken the path to understand our son's condition better. There's no substitute for good, timely information--Parents everywhere need to be informed about SPD today! C'mon, we could make T-Shirts to commemorate the month! ("ASK ME ABOUT S.P.D." might sound a bit more inviting than "PROUD PARENT OF A CHILD WITH S.P.D." but I'm not picky.)

With your help, dear reader, who knows--maybe SPD could be the household word that ADHD once was; only this time, parents would be running out to buy shaving cream, trapeze swings and Moon Sand(TM) rather than Ritalin. What a wonderful, fun-filled world that would be.

Monday, October 13, 2008

Blogs to check out

In honor of SPD Awareness Month, many more moms have written blog posts. Here are a couple that I know of. Check them out. They are so informative!

Good Fountain

Everyday Adventures

Autism Family

Just Me This blog is really exciting as it is by a woman who struggles with SPD as an adult. I look forward to reading her posts about SPD this month.

My Shore

I will add more as I find them.

Sunday, October 12, 2008

A letter from Carol Kranowitz (SPD guru)

Dear Patty,

Once parents figure out that SPD is the underlying cause of their sensational child's unusual behavior at home and school, often life begins to get better. The scariest thing is not knowing... Mister Rogers used to croon, "I like to be told if it's going to hurt," and we all can agree to that! Learning about SPD helps the whole family support the child.

Sometimes it takes a while to read a book about SPD, schedule an assessment to get a diagnosis or treatment plan, or start therapy. If that is the case, don't wait -- you can help right away. Lucy Jane Miller, Kathleen Morris, and other marvelous therapists suggest ideas like these:

1) Use natural settings, such as the playground, backyard, and kitchen for sensory-motor fun. Outside is always better -- for everything, in my view -- and inside works, too, of course. (My books, "The Out-of-Sync Child Has Fun" and "The Goodenoughs Get in Sync" have lots of suggestions for families at home. Also, Bonnie Arnwine's "Starting SI Therapy: Fun Activities that Won't Destroy Your Home" is excellent.)

2) Apply deep pressure touch by physically rolling, hugging, pressing, and squeezing your child.

3) Offer heavy work activities, such as pushing, pulling, lifting, and carrying laundry baskets, grocery bags, leaf bags, vacuum cleaners, strollers, etc.

4) Provide many, many opportunities for movement activities, such as swinging, pumping, jumping, running, tumbling, climbing, stretching, digging, crawling, sliding, and gentle roughhousing.

Be there and have fun together!
Warm regards,

Friday, October 10, 2008

What I wish other people understood about SPD, Part 1

Over the years, I have often wished I could make other people understand SPD better. Especially those people who laughed when Danny was having a full-blown sensory meltdown in the Steak N' Shake parking lot. Or the family members who refused to quiet down at 10pm when Danny (and other nieces and nephews) was sleeping, which led to another serious meltdown. Or the people at church who rolled their eyes and made snarky comments when Danny had difficulty with the Father's Day presentation. So, here is a list of the things I wish everyone understood about SPD and about kids in general.

1. This is not merely a behavioral issue.
There is a reason my son sometimes acts the way he does, and it is not because he is a brat. Sure, he can be as bratty as the next kid, but often he is assaulted by sensory stimuli which his body is unable to process well, thereby making it impossible for him to cope.

There is a difference between a behavior tantrum and a sensory meltdown. When it is behavior, the tantrum is usually caused by the kid not getting his way, and it stops when you give him what he wants. When it is sensory-based, it is usually a buildup of overstimulation that causes it. You could give the kid whatever he thinks he wants, but it probably won't help. What does help (sometimes, though once this meltdown has started, it is almost impossible to stop it) is removing all sensory input that you can. Also, in my experience a sensory meltdown is much more intense. Some of Danny's meltdowns scared me because he actually seemed to be in pain. He howled like a wounded animal and couldn't be consoled.

2. Don't judge until you have walked a day in the life of a kid with SPD.
I wish I understood what it is like for Danny to navigate the world, because I would be so much better at empathizing and helping him. I try to remember that his life is hard. Imagine not being able to differentiate between harmless stimuli (like the wind blowing through your hair or the sound of the hand drier in the bathroom) and stimuli that needs to be avoided (like a bug sting or the heat of the stove). The harmless stimuli scares and bothers him as much as the harmful ones. His body in unable to differentiate. So, this means that he is often confronted with several sensations at one time that are troublesome and possibly painful to him. This makes it really hard for him to focus and it makes it much more likely for him to become overstimulated. Who wouldn't misbehave when dealing with a world that is so unpleasant?

Here's an exercise for you. Stop reading this and pay attention to ALL sensory input your nervous system is receiving. Listen for any sounds, including ones you wouldn't normally pay attention to, like the hum of the computer, the furnace or refrigerator kicking on, your kid humming in the next room. Pay attention to everything you feel, including your clothing on your skin, the feel of the chair you are sitting in, any breezes on your skin, etc. You get the picture. Imagine feeling all those sensations intensely, each and every one of them. Imagine not being able to disregard some of those feelings, not being able to ignore the unimportant ones and imagine how difficult your day might be if you had SPD.

3. Moms of kids with SPD are overwhelmed.
If you assume that a mom with an SPD kid is stressed out, most of the time you would be right. I am not whining here, but a mom has to plan and prepare for even the most benign outing with her kid. Going to the park? Fun for most kids, but I need to bring extra clothes in case Danny somehow gets wet so he won't strip down in front of the whole town, because wet clothes are unendurable for him. Also, I have to watch him like a hawk, because he is a sensory seeker which means he often wants more sensory stimulation, which he often gets in the form of running into people or jumping from high places. Other errands also have to be planned well. When Danny was younger, he could handle just one or two errands at a time, and some places he couldn't handle at all, like one grocery store whose flourescent lights really bothered him. Activities that most kids handle quite well and many parents take for granted are fraught with sensory landmines for the SPD kid. This takes its toll on the parents, especially when the child is just beginning therapy and hasn't made much progress yet.

And this doesn't even take into account all the therapy and special exercises, diets, and other activities most parents engage their children in. At one point, Danny was regularly seeing 4 different therapists, and all of them had homework for us to do with him. Now, he still sees an Occupational Therapist and a Speech Therapist and we do sensory integration exercises that the OT gave us a couple of times a week. It can all get a bit overwhelming, especially for parents who have their kids on gluten free/casein free diets and those who have their kids in extracurricular activities that are good for SPD, like karate or gymnastics.

4. Please just offer validation.
Advice can be welcome, but usually not when the kid and mom are in the middle of a crisis. I know it is second nature to want to help someone fix a problem, but it is difficult to take advice while stressed out. If you really have some advice you think could help, wait until things have calmed down and when the mom is less likely to be super defensive. But, really what would be much more welcome is some listening and validation. Don't blow off her concerns or give pat answers. Listen. Empathize. Ask what you can do to help.

5. If your help is refused, don't be offended.
Many times I have had well-meaning people want to help me and Danny when he is having a bad day. The problem is, much of the help most people offer is the kind that actually makes things worse for Danny. For example, once when Danny was super over-stimulated, a friend tried singing to him. This is something I used to try, too. As moms, we often sing to our kids to calm and quiet them. It is typically soothing. Not so for Danny. It is just more stimulation irritating his already raw nerves. So, if you have an idea that the mom refuses, don't take offense. It might be something she has tried in the past that didn't work.

6. Don't expect less of my son because of his disorder.
This may sound like I am contradicting myself here. Yes, Danny often needs some accommodations to help him be successful in some situations, but this doesn't mean he isn't capable of following rules or guidelines. He needs to be held to the same standards as other kids; he just may need some special help to meet those standards.

Stay tuned for the rest of the list. Coming soon.
P.S. Any moms out there with kids with special needs, what would you add to this list? Please share.

Thursday, October 9, 2008

What is SPD and why does it matter?

I am definitely no expert on Sensory Disorder unless living with it for 5 years makes one an expert. People ask me all the time what it is and how it is different from autism and ADHD. It is difficult to answer because SPD affects children (and adults) in different ways. My son and nephew both have the disorder, but it looks very different on each of them. They have some symptoms in common, but not others.

Basically, as the name suggests a person sufferening from SPD does not process sensory information correctly. So, for example, one child who has a tag on his shirt could actually feel acute pain instead of the normal irritation "typical" children would feel. Here is a quote from the SPD Foundation website that sums it up well:

"Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or 'sensory integration.'

"Sensory Processing Disorder (SPD, formerly known as 'sensory integration dysfunction') is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. "

OK, so now that we have established what SPD is, let's talk about why it matters for people to know about this. Again, let me quote the SPD Foundation: "Research by the SPD Foundation indicates that 1 in every 20 children experiences symptoms of Sensory Processing Disorder that are significant enough to affect their ability to participate fully in everyday life. Symptoms of SPD, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life."

One in 20 kids!! And according to some researchers, this is a very conservative number. But, one in 20 kids means that there could be at least one child in each school classroom who suffers from SPD. Also, some researchers suggest that many children who are diagnosed with ADHD actually have SPD instead.

While some of you may never have a child with this disorder, you might still come into contact with one who does. If you work with children at church, in your career, volunteer at school, etc. you will probably meet a kid with SPD.

I feel very strongly about educating people about this disorder. Danny was working with 3 different therapists when he was 18 months and none of them knew much at all about SPD. It was actually my sister who educated me and encouraged me to have him tested. I don't know what would have happened had I not been informed about this disorder. People need to know about this so they can help kids. This is a treatable disorder.
The button above was created by Elizabeth 's husband. Feel free to post it on your blogs to get the word out!

Friday, October 3, 2008

Sensory Processing Disorder

October is Sensory Processing Disorder Awareness Month, (C'mon, you knew it was only a matter of time. EVERY disorder seems to have a month dedicated to it now) and while to some it may seem a bit extreme that an entire month be devoted to SPD, I, for one, am excited about it. I personally believe this disorder affects a lot more kids (and even adults) than we know and I think it is vital that parents understand it so that they can detect it in their own children. Also, there is a lot of information about SPD that can help all kids, since we all, at one time or another, struggle with sensory overload. Many techniques that work on SPD kids work on people of all ages and situations. Also, with the prevalence of kids who have sensory processing problems, chances are you may at some time work or deal with a kid with these problems

So, I have decided to spend some time this month blogging about SPD. Kathleen Morris, editor of SI Focus magazine has graciously agreed to be interviewed by me, as have a couple of mothers of SPD kids. I also plan on posting some book reviews and whatever else I can think of that would educate others about SPD. If anyone has any suggestions, please let me know. And if any of you would like to be interviewed or write a guest post about SPD, just drop me a line.

Thursday, October 2, 2008

bigger and better

I ran into a friend yesterday and when I told her our news--that I am four months pregnant--one of her very first questions was whether we would now be getting a bigger house. It seemed an odd, rather personal and presumptuous question to me.

I find it interesting that having a bigger, nicer, newer house is on so many people's minds. Our house is definitely what I would call modest. We live in the older part of town and have an older house. It is not huge; we have no basement or garage, which I regret, but we do have a really large lot (about a third of an acre). Also, though the house is not enormous, I really like the way it has been laid out. Lack of storage space notwithstanding, the builders of this house knew where to put the square footage: in the kitchen and the family room, which is perfect since these are the two most used rooms in the house. But the best aspect of our house? By far, it is the really low mortgage payment we have each month. We pay $150 less than our rent on a two-bedroom apartment in Chicago.

Technically, I suppose we could actually afford a bigger, newer home. Since moving here, Bil has gotten a raise or two, so based on income we could upsize, theoretically. When I look at our budget on paper, we should definitely be able to afford a bigger mortgage, but then when I see how much of our money actually makes it to our savings account each month, I see an entirely different story. It is especially apparent this year with higher prices on gas, groceries and just about everything. So, while we should be able to swing a larger mortgage, I am not sure we could do that and still save any money, which is one major reason we have decided to be happy where we are. Instead of a bigger house, we plan to pay down our debt (student loan and mortgage) so that if and when we decide to relocate, we will have the means to do so.

It doesn't mean I am not tempted sometimes to look for our dream home. Occasionally, when I visit friends' homes I get a bit envious of their bright, shiny houses in the more fashionable side of town. But, it just doesn't seem worth it to me to trade in my sense of financial well-being. Right now, we do not struggle to pay our bills. We sometimes struggle to pay for the extras, but not so much that I stay up nights worrying. We are able to stay within our budget with some sacrifice and frugality, but we can still afford to eat out once in a while, and never once have I had to resort to some of my money-saving tactics from college (like living on Ramen noodles or eggs until payday).

I grew up in a small house in Chicago equipped with only one bathroom. I have 2 brothers and 1 sister, so none of us had our own room. We managed ok. Yes, it would have been really nice to have an extra bathroom or a bit more space in our bedrooms, but we came out of the experience relatively unscathed--and with some pretty funny stories to tell our kids. And come to think of it, most of my friends were in the same situation. When did that tide turn? Why has our generation decided that we need much bigger, nicer homes than our parents had? What has caused this obsession?

It is really sad to me how obsessed Americans are, how entitled we think we are to more stuff. I don't have statistics, but I would say that we are definitely in the minority world-wide when it comes to how much we have. Most people in other countries don't have multiple cars, huge houses, etc. When I lived in Hong Kong, I don't remember ever visiting a house or apartment--no matter how wealthy the residents--that had a kitchen in which more than 2 people could fit. That was just how it was. When I remember that, it makes it much easier to be content with what I have, even grateful.