Friday, September 24, 2010

sensational siblings

Several years ago, I read an article in which the author suggested it might be better for SPD kids to be only children. The author claimed that it is often difficult for kids with sensory problems to deal with siblings and the sensory stimuli that kids add to life.

Let's face it, kids are overwhelming. Anyone who has attended a birthday party for kindergartners knows this. Surround yourself with other kids and you are just begging to be bombarded with sensory stimuli, especially of the noise variety.

And Danny has never done noise particularly well.

Charlotte had already been born when I read this article, so it was too late for me to follow such advice, though I could see the wisdom in it.

It is very difficult to control the sensory atmosphere in a home when there is more than one child involved. Also, it is difficult to give a kid with special needs your undivided attention when it is....well, divided.

It was only two months before Charlotte was born that Danny was diagnosed with SPD. While I was dealing with night feedings and a major sleep shortage, I was also desperately trying to locate an Occupational Therapist who could help us. During that time, I attempted to start a sensory diet while also trying to determine out what was triggering Danny's meltdowns.

It was not easy.

So I can see how having only one child--especially when that child has SPD--would make life easier, both for the child and for the parents. Were Danny an only child, I could devote much more time to taking him to various therapists and actually doing the assignments they give us. I might even have the time and ambition to start a social skills group.

As it was, the first year of Charlotte's life is a complete blur of meltdowns (both Danny's and mine), therapy exercises and fatigue. More often than not, in those first months of Char's life, one of the three of us was crying about something.

So, it is perhaps surprising that we went ahead and had yet another child, who is now 18 months old.

It was a difficult decision, not one I took lightly. I worried that I was somehow cheating Danny and Charlotte of my attention, patience and time. I worried I wouldn't be able to handle it, that the stress would lead to a breakdown of some sort. I fretted that the extra sensory stimulation that came with an additional child in the house would be too much for Danny's system to handle.

And through it all, I worried that the author of that article was right. Was I just adding that much more chaos and sensory stimulation to Danny's life by having another baby? Would Danny's life be easier if he were an only child?

Well, yes and no.

Without a doubt, there would be less noise in the house, fewer people to disrupt our routines, and more time and attention for Danny. We'd be able to control the atmosphere in the house more easily, and we would probably have more money for his many therapy services, including speech, occupational, and even feeding therapy.

The thing is, though, despite all that, I think out of everything, out of all the interventions, IEPs, special groups and therapies, it has been Danny's interaction with his siblings that has helped him the most. He has learned far more from his younger sister and brother than I could have ever taught him myself.

While adding to our family was not easy, it has had the most unexpected rewards.

Because we aren't always able to control the kids, the noise levels and the sensory stimulation, Danny has learned to cope and adapt. He has to cope with other children; there is no choice. He is now learning that if he needs extra space and quiet, he should go to his room and ask to be left alone.

He has learned that we cannot always control the environment around us; we cannot always make other people quiet down or quit touching him. We are not able to cushion him against all the craziness in the world. So, he is learning to make his needs known, to be his own voice, and to be a bit more flexible. He has learned this from his siblings, who love him and do not judge him.

He has also learned compassion and empathy by watching his younger siblings and how they react to the world around him. There have been countless learning opportunities when Danny has witnessed Charlotte's sadness or watched how gentle you need to be to babies.

There have been times when Charlotte has been crying inconsolably and Danny has gone up to give her a hug. He has even suggested we pray so Tommy would feel better when he was sick. Would he have learned this type of empathy had he not had siblings? I am not sure. I do know, though, that this is not the kind of thing that I could sit down and teach him from a book.

Danny is learning how to share and compromise and play with others, just as he is teaching those same skills to Charlotte and Tommy.

So after all these years, I realize that there may be another side that the article did not cover. Sure, it is easier for kids with SPD to have fewer people in the house, but on the other hand, learning how to deal with unpredictable sensory stimuli is much easier to do when surrounded by those who love them.

And if there is one thing I can say unequivocally, it is that Charlotte and Tommy adore their big brother. And the feeling is mutual.

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For more posts on SPD and Sensational siblings, please visit Hartley's Life with 3 Boys, where she is hosting an SPD blog carnival. Check it out!

Wednesday, September 15, 2010

what's worse than having two kids with SPD? Let me fill you in.

Charlotte has officially been diagnosed with Sensory Processing Disorder.

It wasn't much of a surprise to me, and the evaluation went quite well. The therapist is confident that Charlotte will respond quickly to therapy. Still, I feel a bit overwhelmed by what this means for all of us, especially all the extra work I will now have to do.

Interestingly, the hardest part of this diagnosis has not been my worry for Charlotte or my stress over getting her therapy done, along with Danny's. It's not even my frustration at feeling like I am totally starting from scratch on this SPD journey; Char's symptoms are so different from Danny's it almost feels like a completely different disorder.

No, what has been the most frustrating thing about this experience is the reaction of a very small number of people who have expressed disbelief in the fact that Charlotte might have SPD. I have acquaintances and possibly even one or two family members who think I blow things way out of proportion when it comes to autism, SPD and my kids. People who think the kids will just grow out of their difficulties, that I should quit worrying already. People who think I might possibly just be imagining that my kids are a touch different.

One family member highlighted this when she asked, "Are you sure Charlotte has SPD and isn't just imitating Danny?", which might have been a valid question if Char's symptoms resembled Danny's in any way at all. But they don't.

I understand that people's disbelief is just proof of their lack of understanding of SPD. And at times it stems from their lack of familiarity with my kids. I also know most of the time it does not indicate lack of caring for me and my family.

Still, it bothers me.

The reason people are shocked that Char has SPD is that her symptoms are quite different than Danny's. When Danny gets overstimulated, he gets a bit hyper, unfocused and sometimes even angry and aggressive. Danny will start running into people and objects and throwing himself to the floor. Other times, he might get really upset at someone for being too loud or for touching him, and Danny will yell.

When Char is overwhelmed, she doesn't lash out at other people. Instead she cries. A lot. And she will blow things way, way, way out of proportion. She gets hypersensitive over the smallest of things and she becomes quite unreasonable. I think many people just chalk this behavior up to being a girl, but I know different, because I know how reasonable, calm and focused she is when she's not over stimulated.

As long as she isn't causing trouble like disrupting her Sunday school class or knocking someone over, people tend to assume she is fine.

What they don't see are the sensory meltdowns when nothing can console her, and she keens for 45 minutes or longer.

They don't see that when we are in a bathroom, she begs me plaintively not to flush the toilet, because it hurts her ears so much. And if someone thoughtlessly activates the automatic hand dryer, Char will run away screaming.

These people who are judging me, thinking I am overreacting, don't see how Charlotte seems to almost leave her body when she is overwhelmed and she cannot focus on the simplest task. She zones out so completely, it scares me sometimes.

And they didn't see when she collapsed on the way into the grocery store last week, saying, "Mommy, I can't walk!" The don't know how weak her muscles are, how she will collapse in a puddle at my feet when she can't take any more.

I suppose this just proves to me that there is so much work to be done in educating people on SPD. It's not like the disorder is so well-known that I should be offended at people's ignorance.

Yet, I am offended, not at their ignorance so much, but at their doubt in my judgment as a parent. Sure, they may not know much about SPD, but don't they know me? Don't they trust that I am doing my very best for my kids, that I don't just randomly diagnose them with disorders whenever they misbehave?

I have studied SPD for 7 years now. I have read every book, article and website I can find about the disorder. I have attended seminars and spoken and consulted with dozens of therapists and doctors.

More importantly, though, I have lived with this disorder on a daily basis. I have helped navigate this sensory land mine that is Danny's life and we have had so many successes. I have a little experience with this, so why all the doubt? Why do people assume I have no clue?

I suppose the real question here should be why do I care? Why does it bother me when people doubt me or question my judgment as a parent? What difference does it make if someone thinks I am crazy? If I am confident in my judgment, those other people's doubts don't matter, right?

I'm sure it stems from my insecurity as a mom. Though I do not for a minute doubt Charlotte's diagnosis, I often doubt myself, my abilities to help my kids and my general performance as a mom. But judging from my many conversations with friends and from several of the blogs that I read, this insecurity can't be that unusual, can it?

I think we all feel this way at one time or another, right? And maybe it's not so bad to be insecure sometimes. I mean, when you are doing the most important job in the world, you are bound to worry about performance, especially considering the learning curve involved with parenthood.

Or am I just kidding myself?

Please tell me that I am not the only mom out there who sometimes lies awake at night obsessing over all the times I have screwed up with my kids. Tell me you doubt yourselves sometimes.

Please say I am not alone in this insecurity.

Please.

Wednesday, September 1, 2010

R-E-S-P-E-C-T find out what it means to me!

After getting my Master's degree in Education, I had planned on finding some cush job at a community college teaching adults. Turns out, most colleges only hire adjunct faculty, which means part-time work and no benefits. After over a year of cobbling together a decent salary between three separate schools, I applied for a job teaching high school.

I had never planned on teaching kids. It never really appealed to me. But somehow, it felt right, even though the job I was offered was in a seriously scary neighborhood in Chicago. The school was 'alternative' which means all the students had either dropped out or had been kicked out of their 'regular' high school.

I'm not sure why I thought I was equipped for this job, since grad school never dealt with any practical issues like classroom management. Still, I accepted the job.

And my students took bets on how long I would last.

I struggled the first semester. I was too lax and then I overcompensated and got unreasonably strict and the students knew they had the upper hand. After much advice from my principal and a lot of trial and error, I began to set boundaries and consequences without being a dictator. I had to find a style that I felt comfortable with. Things eventually got better.

It was while teaching at this school that I learned perhaps the greatest lesson on respect.

I had a student named Ryan who was quite loud. She loved to talk and saw nothing wrong with completely disrupting my class. She had a bit of a cocky attitude and didn't much appreciate being told to do, which was fairly common among my students.

One day in class, Ryan was being especially talkative. As she laughed and chatted with her neighbor, I stewed, but tried to calmly redirect Ryan. My attempts proved to to be unsuccessful. Ryan paid me absolutely no attention, until I snapped. Yeah, I totally and completely snapped at the girl in front of all her friends, and I was not particularly professional about it, either.

Knowing that the situation had gotten out of control, I asked Ryan to step outside the class which only served to anger her further. Usually, talking to a kid outside class meant they were in trouble and would possibly be sent to the Dean.

Out in the hall, she slouched against the wall glaring at the floor. She would not look at me and she was seething.

That's when I made a choice that changed my relationship with Ryan forever.

I apologized to her.

I told Ryan that I was wrong for snapping like I did in front of everyone and I was sorry. I explained that I was frustrated but that this did not excuse my behavior, and I was sincere.

I then explained that I needed her to start listening to me in class, to stop talking so much, to help me teach my class.

And you know what Ryan did?

After she recovered from her shock, she apologized too. She admitted that she was wrong to talk so much and be so disrespectful and she promised me she would try to be quieter in class.

And that is exactly what she did. I had Ryan in several classes over the next few years and she was totally respectful to me. She was still the class clown and very expressive--traits which we were able to put to good use in my drama classes--but usually all I had to do was give her a look and she would nod her head and quiet down. In fact, often when students had gotten out of control and I was trying to talk, Ryan would use her large voice to good effect, gaining everyone's attention and telling them to, "Shut the &%ll up!"

I didn't know it at the time, but when I apologized to Ryan, I had earned her loyalty, her trust and her respect.

I had often been taught by example that apologizing or admitting your mistakes is a sign of weakness. In all of my 30+ years, my father has never, ever admitted he was wrong about anything, even insignificant things like accusing the wrong kid of leaving a towel on the floor. And he never apologized when he hurt anyone's feelings. I am not sure why, but I always got the impression that he saw it as a sign of weakness. He was pretty big on claiming being emotional was tantamount to being a big, fat wuss.

And he's not the only one, either. There were many colleagues of mine in that high school who would have rather had their toenails removed with pliers than to ever apologize to a student, even when they were clearly wrong. They thought that admitting their mistakes would somehow weaken their standing and their control over the class. I think they even may have thought it would make the kids disrespect them. And I think a lot of people feel that way.

But I disagree. I think to get respect, you have to be respectful of others. And I believe apologizing when you have hurt others is a way of showing them respect.

I didn't apologize to manipulate Ryan. I didn't do it to diffuse the situation or to gain Ryan's respect, but that is exactly what occurred.

What I realized is that admitting I am wrong does not mean I am weak. In fact, maybe, just maybe, it's a sign of strength and courage, which garners others' respect.

Now, if only I could remember this in my marriage, I know Bil would sure appreciate it!
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For more posts on RESPECT, check out the Spin Cycle.