Wednesday, November 2, 2011

Final Post: Can Mom Be Calm?

No one wants this kind of attention but thank goodness the media is here for us
I hate to be one of those people who leaves a blog hanging. But that is exactly what I've done. I know there is no great damage. I have no contracts, no stakeholders, no ads, and yet it pained me whenever I saw it or was asked about it.

I decided a few months ago to close Can Mom Be Calm? but I think I was just waiting for the right moment to close it and that time is now.

Sheesh, I was in the newspaper again. The last time I wrote about being in the newspaper, it was to defend myself about how I pay my teen babysitter after a wonderful New York Times article talked about the special needs babysitting program that my kids' babysitter had completed. But this time, the issue was very different. This time, I was in the paper because I was in the middle of a shame-on-you article where I shared the story of my eight-month-long battle to get safe school bus transportation for my preschooler receiving special education.

I hate stories like this. I hate that people have to go to the media to get things done. I used to be a publicist at a hospital and once in a while I would get a phone call from a very disgruntled patient who would literally threaten to go to the media unless we did X,Y, and Z.   Dealing with such calls was never fun especially if you end up feeling like you are putting out a fire.  It's stressful. 

Now I was on the other side and I asked myself if my story was ablaze. Perhaps...it was one of those stories that made you shake your head.   The problem was that because we lived in a different borough (county) from our school, the bus was allowed to take my then 3-year-old in a ride that could last up to 1 hour and 45 minutes long, even though the distance was only twenty minutes by car with my slow driving. There was a way out of suffering this busride and Spencer certainly did qualify for it.  Certain medical conditions he had would make such a long ride horrible for his health. I got the right forms filled out and had it approved within a couple of weeks of him riding on this awful route. However, the approval meant nothing because I still wasn't able to get things changed for another two months. When they finally changed it, the change lasted only three weeks.

Sure, they gave me some sort of brief explanation but they wouldn't tell me when I would see change, not even an estimated date. I was worried because they would take Spencer in front of another school just a few blocks away and make him wait there until those kids came out before embarking on a long ride to go home.  That wait could last anywhere from 15 to 30 minutes depending on who else from Spencer's school rode the bus before they stopped at the other school.  Luckily, at the time, there were other kids from Spencer's school being dropped off and so during the colder months, I didn't think Spencer would be waiting too long in front of the school. It matters if it is cold or hot outside because when a school bus waits in front of a school, they must turn off the engine thereby turning off the heat or A/C.

But everything came crashing down in the Spring. The city stopped answering my phone calls asking when we would see a change. I would write emails to higher-up folks too and was astounded that no one replied. It was as if I was a ghost. I was virtually ignored.

I went to my local city council member, Jimmy Van Bramer for help and for months his constituent liaison, Deborah, would tell me where Spencer's bus issue was being discussed. First it would be discussed at a meeting with certain officials, then approved by another government body, then it was supposed to be finished, I was told.  Without her, I was totally in the dark.

By late Spring, things really went downhill, the timeline of progress given to my councilmember's office suddenly came to a halt and there was no news of when things would be completed, by then it was a good seven months of waiting and it was like I woke up and wondered, how I could let this go on for so long. I did what I was told. I tried to be patient. I didn't scream at anyone. But look, I was still nowhere.  I hated myself.

To make matters worse, Spencer was now the only boy from his school to be picked up on that bus and so there was no more of him sitting in a moving bus, now it would just be him sitting in a parked bus for at least 30 minutes. At this time, it must be mentioned that New York City humidity is pretty disgusting. And yet, buses have to turn off their engine in front of schools for more than 3 minutes.  So what about the A/C on my child's bus? What about Spencer? Would the driver really risk a $2,000 fine? Would Spencer then bake in a bus?

Of course not, because I decided to take him home myself shortly after learning that Spencer would be sitting there like that. Even on the days when it wasn't so hot, I felt just awful about my little guy just sitting there. I bought him a Leapster Explorer to play with but oftentimes he refused to play with it because he is rigid about what he can do on a bus. I literally asked the bus matron to stop asking him if he wanted it and just told her to leave it on his lap and walk away.

I was furious for having to transport my son like this.  Not only did I lose a lot of my own time and gas money, but I think it is just wrong that a parent would have to pick up a child repeatedly to keep him safe from an unsafe bus ride. The city would never tell me when it would be corrected. They wouldn't even tell me why I had to wait so long. I had no idea when this would end, if at all.  Maybe they were hoping that I would just disappear if they ignored me for a while or maybe they were working hard on it but just didn't feel like telling me.  I will never know.

What would I have done if I had a 9-5 job? Even if I didn't have one, I didn't give up my career to spend my energy on this! And say I was a mom who had a job like my mother did back then when she was a factory seamstress working for bare minimum wages. She would have been fired on the spot for leaving. It's just not fair and yet, when I say that, I feel like I sound like many kids with ADHD or ASD stomping their feet on the floor because they can't be "reasonable" or "realistic." But really, when are we supposed to stop fighting and start being "flexible"? How do we teach our kids when we should fight and when we should let things go? I have trouble with this myself still.

I don't know about you but I really suck at confrontation. To make matters worse, writing emails where I delineate infractions and point out fallacies takes hours for me. I write it, edit it, and reread it and then reread it again because I am the Queen of Careless Errors. Oh, and also, you can't do this kind of writing when your kids are home. If you did, that is one more thing that this ordeal has taken away from you. And heaven forbid if I picked up the phone and had yet another futile conversation with a complaint-taker. After hanging up, even if it was only a ten minute call, I would sink into a funk because it's all so depressing.

"Fight, fight, fight," everyone says. Did anyone ever tell these people who wield so much power over our lives that I need all of my patience and energy to give to my children with special needs? Could I be allowed to provide that kind of mothering instead of the exhausted, crabby, angry mothering I gave by the time they were home from school? After all this "fighting," I truly felt like my family had been robbed. While my love for them is endless, my daily supply of patience and energy is not. I am human, and my mind and body require consistent rest and refueling and if the bureaucrats take that away from me because I have to "fight" then what do I have left for my kids? 

This is what angers me the most about this whole thing. Don't they (anyone who has power over us) want us to be good parents to our kids? Don't they want us to be true partners? Don't they think that if we can provide therapeutic and learning opportunities at home as much as possible then perhaps just maybe.... just MAYBE??..... our children would be less expensive to educate? But I have to ask them, how can they expect this from me when they have eaten all the meat off my bones and I am but a skeleton by 3 PM.

At one point, I really really did start to actually fear that Spencer's route would never be changed and that I would have to go get him everyday in the summer and possibly the entire school year to come. I contemplated getting a lawyer but wasn't that just crazy? Getting a lawyer because your child is not getting FAPE (free and appropriate education) is one thing but getting a lawyer so that your child won't bake on a bus? Then I would need to look outside my window and make sure I'm still living in America.  

But really, I would literally write emails to the top folks in charge of school transportation in the city and say things like, 'tomorrow, the real feel temperature is 95 degrees. If you don't have a bus for him yet, can you do something in the meantime? How is it okay for him to sit in front of another school for 30 minutes with no A/C because the bus has to be shut off?'   The rules also say that the bus staff can't even give him a sip of water! (I guess it's because of choking.)  And let's not forget, we can't have sick bus staff taking our kids home. If my kid is baking on a bus, then somebody is supposed to be there baking with him. When the kids from the other school finally get on the bus and bus gets going, how can we expect that the bus staff will be in decent health?

Luckily for me, the bus matron and driver were the kind of people who would rather risk losing their jobs by giving a kid some water than to have a child under their care end up in the emergency room. Still, they would have to break the law and other rules to keep him safe.

So, I did what I really really really didn't want to do. I was very scared to do it because if people could be so neglectful and/or incompetent, how did I know I wasn't creating more problems for my other child who is also "in the system"?    But I had to go to the media. I didn't want to hire an attorney not just because of the money but also because of the wait. Going to the press was faster and I had no more time to waste. Summer in New York City is just plain brutal. All subways and buses are air-conditioned.  Why can't our kids have this too?

My councilmember, who was never mentioned in the story, was the one who pitched it. I was actually very worried because I wasn't quite sure how much of a story it would be. Would any reporter pick it up? Spencer was never in the emergency room. I never let him boil on the bus. Could we really get any coverage? 

There was one newspaper who cared enough about him to put him on page 3. The article also had a huge picture of me and Spencer sitting in front of a yellow school bus. But you know, it did deserve to be on Page 3 because part of the story included how we got a new bus route within 24 hours of the reporter calling them to ask questions about Spencer. I had been trying to solve this with a pattern of complaining and waiting and then more firm complaining and then going to a local official. My council member had been trying to push this along with cooperative advocacy but clearly no one is rewarded for working this way.

You would think that I'd be happy with the results and I am but I am also very sad too. I don't think it is right that a parent has to go this far. The Daily News was kind in not disclosing my son's school name and his last name but again, this is luck. Because from my own experience of having to pitch personal stories from a hospital, I can assure you that not every editor will allow a story to go out like that. Like I say all the time, when it comes to my kids, they are not so lucky to have these challenges but in the course of raising them, we have been graced by the presence of some very fine human beings who exemplify the characteristics that I want my children to embrace.

While Spencer is too immature to understand it, I learned through this experience that in the face of adversity, I now have to explain to Logan what is happening and use this teachable moment. I need to teach him how "this is what I mean about speaking up for yourself." At first I didn't explain why I kept coming to get the both of them from school. He even asked me and I made up some lie. But that was a big mistake because I once ended up complaining to the city on the phone and he was unavoidably with me (in the car) hearing the whole thing. He got so upset that he actually ended up vomiting several minutes later. But then I sat him down and explained to him what people do when when they are wronged. I explained that I chose to get help from a newspaper to keep his little brother safe. It also gave me the chance to explain one of the roles of a newspaper in a community. Afterwards he thanked me for telling him the story and then said, "So that is why you've been picking us up everyday."

This was definitely a lesson in advocacy for Logan but also a lesson in bullying. Yes, bullying. Because there is no doubt in my mind that I was a victim of bullying- the grown-up bureaucratic version of bullying. I really do. Bullies do things to you because they think they can. And though we teach our kids to stand up for themselves. Sometimes that's not enough and that is why bullying continues. When you alone can't stop a bully, you have to ask your friends for help. We made a lot of friends throughout this process. All of them said the same thing to this bully and that is, "I see you, I know what you are doing, you'd better stop and I'll be watching you to make sure that you do. "

So is this the last post to Can Mom Be Calm? I thought I would end this blog with this story because it had everything to do with calm. Have I found it? Can I close it because I have it now? Well, not exactly but I seek calm less now. I am less afraid to not have it. I am less embarrassed when I don't.

I was not calm about this bus thing. I sometimes tried to have calm by being complacent and avoiding confrontation. I told myself I was being patient. That usually got me nowhere and that was not true calm. Cowardice never brings calm.

But after a while, I wasn't calm and decided to let myself get angry about the bus. I started to stop being sorry that I was in everyone's face all the time. I kept talking even when I saw that people were not happy to hear what I was saying. Sure they don't want to deal with it. No one does. This decision to let myself get really bothered by it was a release.  It actually worked to fill my reserves with energy (and calm) so that I could argue for better opportunities for my kids. 

When I am in some sort of battle about something, I try to explain to my husband that sometimes, this is how it has to be. It can't be easy all the time and if someone is kicking you around..... then NOT being complacent will eventually bring the peace and calm that we want. There are times when fighting (a.k.a. "advocacy") will take over your life because it is the birthing process of something better to come. I wish I could be very calm throughout this process but I am just not that evolved. I settled for so-so calm instead.

My husband and others said that it was taking over my life and I said, "You bet it is but I can not end this until I put out this fire completely." I couldn't let this go on for another year! It would have surely killed me. Everyone expected me to be the cheery "yes" person and this time, I just was not. I was angry. I snapped at everyone, especially my family. Once my brother phoned me but then could not listen to me complain about the bus anymore and he sort of hung up on me the most polite way he could. I called him back and let him have it.

Sorry if my life is not all roses for you. Sorry if I don't say "Fine" when you ask me how I am. Sorry if I just sound like I'm complaining all the time these days. To the people closest to me, I shouldn't have to always lie and try to make them feel comfortable. My life can get ugly sometimes and I can only hide it so much. I don't need them to be miserable with me but if they want to talk to me then they have to be willing to see my family for who we are and what we go through.

Thus, being calm while dealing with something like this would mean, at least for me, that I'm dead. Being angry when someone is treating you like shit is normal.  And even if we have to train ourselves to be different, getting upset when your kid is doing something really unbelievable is at least initially a NORMAL reaction!  Losing it, throwing and even breaking shit once in a while has to be normal too, right? It has to be. How can it not? I know we do our best parenting and advocacy when we are calm but sometimes, attaining calm is a process and we have to start the process sometime, even if it is rocky in the beginning.

I feel like I've changed a little. Recently, at a family gathering, I saw my family and some in-laws. It was a big party and these always makes me nervous even though I know it is good for my kids to go to these things. I tried my best to be calm while trying to help my kids take advantage of this socially challenging opportunity. Even though being with family is stressful, there is love there and my kids know it.

The evening started out awful. One of my children was running around in circles. The other one wouldn't eat his dinner unless he was sitting on my lap and spoonfed. I just wanted to get dinner over with so we could get the kids moving about but barely anyone helped me. Instead what I got was criticism.

"Excuse me," I thought to myself, "but how many times did I tell you that my kids have issues? Why must you always think it is my fault?"  But these words left the thought bubble and transformed into real words leaving my good Korean American girl's mouth and actively rebuking my elders. I thought to myself, why do I need to make everyone feel comfortable? I am not comfortable and they are making it worse. So for an elder relative who criticized me about spoon-feeding my child at his age. I gave her a very direct blank stare with very intentionally awkward response of no verbal response (you can not do this be Korean at the same time- something will catch on fire).  She wouldn't have understood that my son was overwhelmed and needed extra help.  I was too pissed to explain for the 100th time.

For my mother who chimed in with something about how Spencer eats too many sausages, I gave her the same blank stare at first but then gave her a verbal thrashing the next day of "Do I have to explain to you AGAIN how his oral muscles are weak? Didn't I tell you that he has a hard time chewing and swallowing meat?" I actually just flat out told her to stop blaming me for their faults. Deep down, if she's not accepting their differences, then she is likely blaming me for them. They all are. No need to be nice if this is happening, right?  Sometimes you have to be very direct and even shout a little to be heard.  Can you shout in a calm way?  I suppose not but now that I've done it, I'm calmer, we all are.  The air was cleared, at least until they stop believing me again.

How refreshing it is to not have to be nice all the time to people who are not nice to you. At the time of tension, you are not happy. This is true. During the whole bus thing, I yelled at my kids all the time. But I don't anymore (at least not everyday). We are happier and I have healed a lot over the summer and early fall. I know my kids and my husband have forgiven me for being unbelievably crabby during this debacle. Even after winning a big fight, you still end up scarred and you need time to heal your wounds. But it's better now and I think that we will live to fight and win another day.

So let's ask this now: Can Mom Be Calm?

My answer is: "sometimes" and "sometimes" is good enough for me to move on.

Next up:

THIS IS MY NEW SITE! -www.toysaretools.com

My friend once told me that shopping was her sport. (Love you Fern, I am your shopping disciple.)  I think it is a natural progression for many parents with special needs kids. We shop for toys with hope that this could help them work on their much needed areas of development or bring them joy that will help them carry those endorphins throughout the day so they can be in a great mood to tackle the harder parts of their daily lives.

Shopping with certain skill sets in mind can help parents become more goal-oriented and savvy about their purchases. Additionally, this "sport" is very time-consuming and expensive. Searching, finding the details, reading comments, weighing the comments, comparing products, buying it, and then trying it out at home and being disappointed regardless of the work you put into it can be disheartening and cause small to medium-sized marital fights. It is my goal to eliminate those feelings and make every purchase something that will put a smile on everyone's face. Additionally, I will also post my family fix-its, that include gadgets and other ideas that is intended to help with behavior training and family functionality. Please come visit me!

There are other great things to read out on the blogosphere. Please check out some of my favorites, some of sites written by friends and some are run by people I've never met. Also, I should say that I have not received any payment in exchange for being mentioned here in my list which is arranged in no particular order.

http://www.myspecialneedsnetwork.com/  This is anonline community bringing special education teachers, therapists, and parents into one big room.  They introduce lots of neat products here and give members a chance to win a few of them.  Membership is easy and free and seems to be growing really fast.  The blog posts are interesting and informative. This is a site to watch.

http://specialchildren.about.com/ Few things can be as comprehensive and as updated as this site. Terry Mauro is the roving reporter for special needs news and she also occasionally throws out a question and has people sharing info and voting for their favorite sites. Information junkies: this is your stop

http://amomsviewofadhd.com This blog is awesome. Penny Williams' blog is a roundtable of great minds dishing out how to survive and thrive with ADHD in their families.

http://www.veryspecialkids.com/ A very different site others listed here but much needed in my great city. Every city and every town should try to bring their resources to a central place. I get my best info from other parents but it takes so much time.  That time could go to caring for kids and ourselves instead.

http://www.sengifted.org/ Wow! Do I learn a lot here. There have dozens of free articles about gifted children with special needs. I just love how they are out there advocating for twice-exceptional (2e) kids. ADHD and autism are disabilities with a disability, I like to say... but being twice-exceptional, ugh, it's an everyday battle that fools even the child's parents. If you have a special needs child who makes you check to see if he really is seven and not seventeen because he just said something that showed some seriously advanced thinking then you have to stop here. Here I learned how to protect and encourage my 2e baby.

http://www.hartleysboys.com/ Hartley Steiner is a very smart and hardworking mom whose personal mission is to educate everyone about SPD and a million other things because she does pretty much everything including having written a children's book about SPD.

http://www.thequadmanhattan.com/  Even if you don't live in Manhattan or NYC for that matter, you have to see what is going on here. Ask yourself if classes teaching stand-up comedy, magic, tinkering with electronics is therapeutic and the Quad will say,"absolutely."  To me, this is a great social experiment to provide gifted kids with issues, things like engineering classes with solid support to help them be successful as they can be.  The kids might end up blowing you away.  My son took a martial arts class here and he usually gets thrown out of such classes in the general community.  He takes a class here and ends up quite possibly the most athletic kid in the group.  We knew he had "lots of energy" but who knew he was actually talented?  The layers were peeled off here.  Now he's learning magic which means that he's learning that you need to look at how others see you to make them believe your trick.  This is a crucial social skill that many SN kids lack.

Thank you so much for stopping by here on my last day and for reading what is probably my longest post ever.  It's been an honor.

Until we meet again at www.toysaretools.com,

Jenn


This post is dedicated to my mother, whom I have shamefully mentioned yelling at here.  She taught me by example how to be resourceful and keep on working until I am satisfied.   Luckily, she programmed the bar to be really high for me so I still keep ticking as I look for more ways to raise my kids to become the persons they want to be.  This blog and the next one has been just another way of being a resourceful mother as she was and still is to me.









9 comments:

Fern Robles said...

Good luck on your new blog, Jenn!
:) Fern

Terri Mauro said...

Thanks for mentioning my site, Jenn! And congrats on the bus victory. I've added your new blog to my RSS reader and look forward to reading more from you there.

Bruce said...

Thnaks for a great post
ADHD

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Anne said...

The life as a mom, evolves. When looking back in retrospect, I now understand things I didn't when my children were young. Times when my lack of calmness added fuel to the fire. Sometimes the Life of Benjamin Button, seems to be a more logical solution to life.