broken and whole

The past two Wednesdays have found me touring potential schools for Ira. Last week, I visited a school in Manhattan and today I visited a school in Queens. Both schools specialize in special needs children. Both schools are fantastic. Both schools are far away from where we live. But that’s not the purpose of today’s post.

As I toured the school last week I was once again reminded of how broken this world is. I peeked into classrooms where teachers were working hard to get their students’ attention. Sure, this takes place in every elementary classroom across the globe but in special needs classrooms, the effort the teachers give seems greater. I watched kids in gym class with their physical therapists as they worked on the basic function of walking. In the most restrictive classrooms, adults practically outnumbered the kids.

With memories of last week’s tour still fresh on my mind, I walked through the halls of the Queens school today. Up and down the halls were kids in physical therapy sessions. In one class the entire room was dark save one spotlight that shone on a kid who stood at an easel. The darkened room was to eliminate any and all distractions. Other kids were in speech therapy learning their new computer talking program.

So we’re walking around this school today (me, other parents, the director of the school) and the brokenness begins to overwhelm me. These kids have seen, felt and heard too much in their little lives. It’s not supposed to be this way. They aren’t supposed to know this pain. They aren’t supposed to take on such incredible difficulties. They aren’t supposed to carry this much weight.

And as the anger begins to well up inside me at the unfairness of it all, at the “it doesn’t have to be this way” of it all, the Spirit moves in me and reminds me that I’m surrounded by those who are inheritors of the Kingdom of God. The Spirit reminds me that those scooting around me in the hall, those being wheeled around corners, those working on their walking skills, those touching the screen of their talking machines are the very ones that make up the Kingdom of God. The Spirit, taking on the role of instructor, nudges me and says, “Now look at this picture again. Who are the broken ones in this picture? Do you think you might have gotten this all wrong? Is it possible that you and these other fine parents are the broken ones and these kids are the whole ones?”

With this movement of the Spirit I begin to weep. And about the time that tears have made their way down my cheek, the director turns to us and asks, “Are there any questions?” She sees the tears and gives a simple nod. She doesn’t respond with an “Are you okay, Mr. Hays?” There was no “Can I get you a tissue?” No “Oh, there goes another one. Geez.” Just a simple nod as if to say, “Yeah, I hear you.”

who are you?

So why the previous post on the Myers-Briggs inventory? Because that is one way of getting at who you are as a person. Titles are another way. Professions and professional statuses are still other ways. You see, I do think it’s important to ask the question Who Am I? because it’s my theory that you aren’t so great for the world without a firm understanding of who you are.

There are certainly different ways of coming to a self-realization, Myers-Briggs being one of them, but the work of finding yourself and being at peace with who you are is important. Another way of finding out who you are is by asking others, Who do you say that I am? That can be an intense question to ask of someone as you may not like the answer that comes back at you but it’s worth asking.

In the end, whether you define yourself through the Myers-Briggs inventory, a title, a specific characteristic, a story that sums you up or the answers to the question Who do you say that I am? you must realize that the truth of who you are is summed up in six short but very important words: You are a child of God. That is who you are. You are God’s child.

With that truth embedded in the depths of your being, you will be your full self: unencumbered, authentic and transparent. With that truth of who you are firmly rooted in your soul, with that truth housed in your heart you will be good for your family. You will be good for your neighbors. You will be good for your community. You will be good for the world.

darn you, myers-briggs

Turns out Myers-Briggs knows me pretty well. I’m an ESFJ, aka, a helper or provider. Myers-Briggs says that I’m well suited to be a nurturer of established institutions such as schools, businesses and, yep, you guessed it, churches. Myers-Briggs also says that I’m sensitive in all the right ways - to other people’s plight - and in all the wrong ways - to what others think of me. Darn you, Myers-Briggs, you know me so well.

A friend of mine came across an article in which the three presidential candidates are examined based upon  the Myers-Briggs Type Indicator. John McCain is an ESTP – a promoter.  His speech is concrete and he is utilitarian in achieving goals. He gets people to do things. You should note that John McCain shares the ESTP platform with George W Bush. I’m just sayin’. Hillary Clinton is an ENTJ or rather, a fieldmarshal. She has the ability to visualize where the organization is going and can communicate that to others. Finally, Barak Obama is an ENFP. I kid you not that the moniker given ENFPs is that of champion. I don’t think I need to say anything more about that.

So what are you? Don’t know? Well go here and take a sample test and it’ll spit out the type of person you are. Then come back here and tell me, Does Myers-Briggs get it right?

friday fun

This is a great awareness test. Take a look and let me know how you did…but don’t spoil it for others in the comments section.

a dream

You might remember me asking for your help on how to tutor a kid who doesn’t know their multiplication table. I’m happy to report that not only does she know her multiplication table but she’s made huge strides in several of her subjects. I’m confident that she’ll move on from the safe environment of elementary school and into the unsympathetic arms of middle school.

I’m sad to report, however, that the very tutoring center that gave her the extra push she needed to move to the next grade level is closing this month. You see, the city made budget cuts and community centers located in the middle of housing projects for low-income folks were the first items cut. That’s right, the community center is closing down; therefore, there is no more tutoring for these kids.

Which leads me to this, since coming here to Brooklyn, I’ve envisioned CCFB overseeing a tutoring program. I haven’t shared that dream with many folks and I do so here reluctantly knowing that it might never be a dream realized. But I thought that maybe if I blogged about it, you all might hold me accountable to search out the possibilities of this dream.

Here are the potential roadblocks hindering this dream:

1. CCFB owns no property. We rent out the cafeteria in a public school for our Sunday services. We have no physical space to meet in.
2. CCFB doesn’t have much money. We’re a small church and while we are seeing some numeric growth, it’s still not enough to sustain a tutoring center.
3. To make the tutoring center legit, there would be much work that would have to be done. I’m thinking insurance, rules, responsibilities, etc. In other words, a lot of work would have to go into this.
4. Finally, many of CCFB’s people don’t live in this neighborhood so they would support it from afar. They would not be able to give their physical time and energy to this dream.

A couple of these roadblocks are easy to remedy:

1. CCFB could rent a storefront near the housing projects - which, by the way, is just two blocks from where I live. There is always space to rent.
2. With the help of others, I’m up for this kind of challenge so the amount of work isn’t an issue.
3. The fourth roadblock wouldn’t be a problem either as tons of neighborhood folks want to give their time in this very rewarding way. I’m not advocating for a Christian tutoring program in which at the end of the day we all stand in a circle and pray. I just want to help the kids with their homework. I’m guessing a lot of my neighbors do as well.

So the only roadblock is money. hmm…

schooltime

Regarding the services provided to children with special needs, no other state in the United States of America comes close to New York . Sure, the process, paperwork and overworked professionals are a bit overwhelming to work with but in the end, the services that Ira receives and will continue to receive are amazing. And at no cost to my family. That is a good use of tax payers money.

Ira is aging out of Early Intervention into a program that New York State calls Committee on Preschool Special Education, or, CPSE. Not too long ago Laura and I met our CPSE coordinator, a parent advocate and our Early Intervention coordinator for what we and others have been calling “the board of ed meeting.” It sounded ominous and we were prepared to fight for our son’s rights. After all, these government agencies are pretty strict and with a tight education budget we thought they might withhold some of what Ira needs. We had to fight for nothing as we got everything we asked for including a nurse who will be with Ira the entire time he’s at school.

Which leads me to once again petition your positive thoughts, well wishes and prayers. We need to find Ira a school. The process thus far has been laborious. There’s a neighborhood school that looked great but that didn’t work out for a variety of reasons. There are other schools that would be a good fit for Ira but one is on the Upper West Side of Manhattan, another in Queens and another in southern Brooklyn. There are others to be sure, but they aren’t that great. In order to get to these good schools in Manhattan, Queens and southern Brooklyn, Laura and I would either drive Ira every day (ugh!) or put Ira on a bus every morning at 7 a.m. (double ugh!).

Does it sound like I’m complaining? Forgive me. I don’t want to seem ungrateful. As I mentioned earlier, we’re fortunate to live in the great state of New York where they value kids with special needs. And the fact that we have so many schools to choose from is nice. So scratch all that “ugh!” business. This is a good problem to have.

happy 33rd, baby

This was a video I made for Laura’s surprise party on her 31st birthday in 2006. And yes, there are indeed fields of gold.

(BTW, the video is not as long as it appears.)

nj, here we come!

Someone asked about Ira’s feeding issues in a comment not long ago. It went something like this, “Now that Ira’s trach is no longer an issue, is Ira eating by mouth?” The answer is a clear and definitive “No!”

While Ira’s trach was an issue to be reckoned with regarding the feeding issues, Ira’s feeding troubles are largely behavioral at this point. The boy can swallow and has been cleared to eat but he simply would rather not. “Just strap on the feeding back-pack and let’s get on with it,” Ira might say if he could talk that clearly. I wrote about this back in October so go back and check that out here.

So to hopefully make some progress we enrolled Ira in an intensive feeding clinic that will begin in mid-May. The clinic has a great reputation and specifically the intensive program is supposed to work miracles. The program is five days a week (Mon-Fri) and operates from 8:30 a.m. - 4 PM and runs for four weeks.

The no-so-good part of this is that the clinic is in New Jersey. Ugh. The commute won’t be so bad going to NJ every morning but coming back through the city in the afternoon will be a killer. And we’re very excited to pay for super-expensive gas to make it all happen. I know, I know. Some of you have commuted like this for years but for those of us who rarely drive our cars, this is kinda a big deal. Don’t you feel sorry for us?

We’re excited about the possibilities of this intensive clinic. Considering Ira’s latest run, I tend to think he’ll do just fine with the challenges presented him there.

i can get used to this

I went to caress the back of Ira’s head and neck and there was NO TRACH TIE. The feel of his little naked neck was refreshing.

And do you know how easy it is to get out with two kids without the extra baggage of a suction machine and another bag full of “just in case” items? Well let me tell you, it’s easy.

Yeah, I think I can get used to this.

a time to reflect

Sunday mornings are pretty stressful for me. From the moment my eyes open, my mind is rushing. Is the sermon just how I want it? Do we have all the supplies we’re gonna need for the day’s service? Will it all come together? I wonder if “Jack” is feeling well enough to make it today? I hope “Jill” finds the strength to get out of bed today. And on and on and on.

And if I’m not careful, I’ll start thinking ahead to the work week - the meetings, the counseling sessions, the reading, the writing. And all of that just adds to the already heavy weight upon my shoulders.

But today, today is different. This morning I opened my eyes and the first thing I thought about was this past week and how incredible it was - how phenomenal it was to watch them pull that trach from Ira’s neck; how amazing it was (and is) to be around Ira as he discovered a new world; how fun it was this week to just sit and watch him laugh. And those thoughts have calmed me. Those thoughts have given me a peace this morning that I should encounter more often on Sunday mornings. Those thoughts have informed my understanding of the Good News today.

This is the day the Lord has made and I will rejoice and be glad in it.