The Silver Lining

One of the constants in my life for the last 13 years has been ongoing recognition of just how great my husband is. We've always had fun when we're supposed to do so, when things are going our way and times are good. I appreciate that but it is not out of the ordinary. What is remarkable is that when things haven't gone our way (like for the last 8 months), our relationship becomes stronger, not weaker.

In moments like this I always think of our first real hardship as a married couple, when I miscarried our first child. It was hands-down the worst night of my life to date, one of those experiences you can't truly understand unless you've gone through it. At 6 am when the doctor came in to tell us the baby was gone, he said something that has stuck with me ever since. He and his wife had gone through this and it had brought them closer together and he believed we should look for the same.

In the moment it seemed nice yet meaningless, one of those things people say to make you feel better when nothing really can. In the years since it has come to symbolize what I consider the true strength of our relationship. We both realize that there is nothing that we can't face and survive as long as we do it together.

Having Craig during the "for better" times is great and I appreciate all that we do. Having Craig during the "for worse" times is essential to my surviving them. That we seem to come through them all with a stronger marriage is the silver lining.

The Trap

I found some paperwork I'd been given by the psychologist at C.J.'s MDT meeting while cleaning this week, glanced through it quickly and did a double-take. My eyes, of course, had landed on the section where they discussed how often these diagnoses are not followed through on by parents and teachers. It is easy, the piece of paper explained, to get so focused on the student's strengths that you don't take seriously enough their weaknesses.

Had Craig and I fallen into this trap? C.J. has been so happy at his new school, with no real problems that we have gotten complacent. We worry a lot about every day logistics but not the long-term decisions. The Assistant Principal who is running C.J.'s meetings has been sick and busy and I haven't been pushy about scheduling the next IEP meeting. I have even wondered if we should just wait and see if there is a problem next year and have the new school create the IEP. It would then take into account any changes that occurred as he moved into kindergarten, I tell myself, and would perhaps be less complicated if I weren't so directly involved.

All are completely logical thoughts. Deep down, however, I have to admit that the piece of paper is right and part of me still doesn't want to accept all that we have learned. He is only 4 and given that today he picked up a book and started reading it to me, it is hard to believe he's going to struggle academically. It is especially difficult, though, to accept that he's not going to "grow out of" his social issues. I have spent much of my teaching life with students who struggle to fit in socially and it can be hard to watch, much less live through.

So we need to be optimistic but also realistic. We are catching everything early, which is great. He also does have this huge Verbal IQ (shown in the early reading) to help him compensate for his weakness. I see lots of reasons to be encouraged for the future and think his road will be much easier than many others with whom I've worked. But it doesn't mean we don't have a lot of work ahead

Not all the hard decisions are behind us. We don't have to tackle them all right now, but we also can't pretend they don't exist.

The Quest for Perfection

How simple it is to change parts of your life once you've left the Land of Indecision. As with most things, the first step is the hard one and then you just glide on through with the others.

Getting C.J. in a spot that worked for him was the first, and hardest, decision to make. Seeing how happy he was and how it helped everyone involved has made other decisions easier. I let Hope know that I wouldn't be coming back next year and they have decided to make the transition this year so the new person can be ready to go in the fall and so I can have a chance to get my health back in order before taking on a new position. (One that will not require 70 hour weeks and the stress of still not having meet every one's needs.) Money will be a struggle for a while, but not having Craig bear most of the weight at home and giving my kids a functional mom will make that struggle worthwhile.

Finding a new school for the boys has also started and we have some good prospects in the city. We won't know until mid-April if they got in anywhere (all the charter schools have a lottery to determine who can attend) but we are optimistic. If we don't, we'll have time to think through other options, including moving.

C.J. is still a happy camper at his school. They made and ate green eggs and ham on Friday in honor of Dr. Seuss' birthday and he loved it. He did tell me today that he wished he could go to school there without having to leave me, so I think the transition back next week might be a little rougher. The other good piece of my leaving my job is that at times I'll be able to go with him so he doesn't have to make that choice. In the meantime, we'll have lots of good snuggles and read lots of books during mommy time to let him know he is still important to us.

Life is not perfect, but I'm realizing that the quest for perfection is just that, a quest. And quests are often more about the journey than the destination.

Good Beginnings

This week went well. C.J. loved the school. For the first 30 seconds on Monday he was attached to me and then he saw the water table. The teacher came over and helped him get involved and he was off. I went to talk to the director and he spent the 20 minutes exploring the new space and announced when I came back that "I love this place!" I did too. There are 8 students and 2 teachers and lots of room for exploring his world and also directed instruction one-on-one (a modified Montessori is the best way to think about it). While we were there the teacher was working with students on taste, having them come up and sit with her to taste different liquids and talk about what each was. Very cool and very C.J. So I wrote a check and that was it. He stayed up with Mimi and spent the next three days getting to know his new classmates and teachers.

He came back last night and spent today saying goodbye to his classmates at Hope. He was a happy camper when he came home last night and full of great stories from his new world. His party today went well and he didn't seem to have any hesitation about leaving his old school behind.

Will it be this smooth for the next few weeks? Probably not. I'm sure we have some rough times ahead of us as he adjusts and figures out the limits of his teacher. She has had experience with ADHD and all the teachers have spent extra time learning about behavior management so I think it will go well, but we won't know for sure for a while. There will also be times where he misses home and we'll have to figure out how to handle those. Still, we are moving forward for the first time in a while, which is cause for celebration.

More changes for the rest of us also. I told work I would not be back next year and they are going to try and start the transition in the next month or so. This will give me more freedom to support C.J. in his adjustment and find a good space for him for next year.

I am more optimistic now than I have been for a while. For now, we are keeping our fingers crossed that the good beginning has an equally good ending.

Survival Mode meets Decision Time

"So you're in survival mode." The minute my friend said it last weekend, it clicked. We were, in fact, in survival mode. Our goal was to make it through each day and week until the school year ended or something miraculous happened, like my health improving or C.J.'s issues suddenly disappearing.

Hearing it, however, also made it hit home that, while survival mode was not great for the adults in the house, it was completely unacceptable for C.J. He has a very few months to make some pretty significant gains in his social skills so that he is better prepared to head into kindergarten. Survival mode was not going to help him. He might not lose ground, but he certainly wasn't going to gain any. The classroom that hadn't worked for him for the last 5 months was not suddenly going to become perfect. His teachers had already worked hard to put in place supports for him and formalizing everything in an IEP was not going to make them work any better than they already had.

There were, in fact, options. I could quit my job, which would be good for my health but bad for our bank account and also not so great for C.J. He needs to be around other kids and bringing him home from school would not help with his social skills since it would only further isolate him. We could send him to a different school, but we'd exhausted all the local options and the school my mom had found near her sounded great but meant sending him away for a part of each week, not a choice any parent wants to make.

So we straddled the fence, accepting no progress out of fear of making the wrong choice. We were trapped where many parents are, in the land of indecision. No option is perfect so you become unable to choose one, waiting for something better to appear. In the meantime, your lack of decision becomes a decision in itself.

What to do? Make a choice and have a back-up plan if it doesn't work. Nothing is permanent and two steps forward followed by one step backwards is still better than no steps at all.

Our choice? On Monday, C.J. and I head to my mom's so we can both see the school that sounds so great. If we agree it is and believe that he can make progress there that he can't elsewhere, he'll stay up there for a few days and try it out. If that goes well, he'll say goodbye to his friends at Hope on Friday next week and start for good up there the following Monday. When school ends in May, so will his vagabond life and we'll have (fingers-crossed) found a good place for him here for the fall.

All this will be surrounded by lots of conversations about how we found this perfect school just for him and that is the only reason he is not going to be with us all the time for the next three months. If at any time it does not seem to be working for him, we revisit our options. Perhaps my leaving work will become a necessity, either to keep him at home or to be able to go up to Meme's with him.

Is this the perfect solution? Absolutely not. Will it break my heart a little every week? Definitely. Does it make me a bad parent? I hope not. Unfortunately, that is something that only C.J. and his therapist will be able to determine when he is 30. I do know that I want my child to do more than survive. I want him to thrive.

Troubled Times

So this was not a great week. C.J. does not do well with transitions and we had Wednesday off so going back to school on Thursday really threw him. There is one student in his class who tends to push C.J.'s buttons and apparently he pushed the wrong one on Thursday and got a kick in the stomach. The other boy was fine but it did result in unhappy parents and more conversations with his teachers and Ms. Lewis, the Academy Leader for Pre-K, along with the principal.

When I spoke with Ms. Lewis about her conversation with the parents, she indicated she had mentioned I was aware of C.J.'s issues and was taking action. That's as far as it went, but she wanted to reassure them that I was not going through life ignoring the actions of my (in their minds) future serial killer son. "Great," I thought. "Another person who thinks I can't do my job."

Being human, it is hard to be out with C.J. and see the looks from other parents and, especially, non-parents. The pursued lips and drawn eyes say it all. "Look at that," I can practically hear them thinking, "she can't even control her son, what a horrible mom." On particularly bad days, I find myself wanting to reassure them that I have two completely normal sons at home. "See," I would say, "it isn't me." I almost immediately feel guilty for that sin, so like Simon Peter, denying that which I love out of fear for how I might be perceived.

I've seen the look that must be in my eyes at those moments in the eyes of parents sitting across the table from me at school. There is a certain desperation in being the parent of any child with special needs, but one with behavior problems can be especially challenging. It can be hard for anyone to understand the struggle that the simplest task can become. You can't take anything for granted and are constantly on the alert for tell-tale signs that a melt-down is on the way. Getting out the door in the morning is a monumental undertaking that can leave you exhausted and stressed-out before you've even started your day.

Here I am lucky that my training has prepared me for C.J. better than that of most parents. We already have our routines, which we stick to as much as humanly possible. The less he has to THINK about what he is doing, the less the possibility that he will react negatively to any given request. That only takes us so far, however, and there is no way to avoid some mornings where it all starts wrong. We wake up late or are out of his favorite cereal or sometimes I'm just too tired to do what I know I should and suddenly he has been in tears 4 times before we even make it to school.

Being a parent is exhausting in the best of circumstances, being the parent of C.J. leaves me in tears more often than I'd want to admit. Those tears are for him more than me, however, because I know that if I'm feeling desperate he must really be in bad shape. He doesn't act the way he does to make my life difficult, he acts that way only when he feels out of control. As hard as it is for me to watch him, it must be that much worse for him to feel so unable to cope with the world around him that his only recourse is to break down and hope that someone will help him fix it. It reminds me of a baby whose only way to communicate is through crying. C.J. doesn't know what he needs or how to get it, he only knows that he can't stand the way he feels at that moment and he wants it all to go away. Building a world in which he can exist comfortably while he increases his coping skills is even more essential now so that he can progress and we can stay sane.

This fact has led to many conversations over the last few weeks. It is apparent that I can no longer juggle my 60+ hour a week job, my health issues (which are a blog in and of themselves) and C.J.'s needs. My breaking under the pressure won't help anyone and Craig can't carry anymore of the load than he already has this last year. So, changes are on the way. A new job for me and perhaps a new place to live for us all if we can't get C.J. into a school that fits his needs.

In the meantime, another resolution to focus on the positive aspects of being C.J.'s parent. One made easier this evening when Craig and I sat and heard him reading his first book, sounding out the words and using the pictures to give him clues. It was a sweet joy to hear him working hard and to see the exultant look on his face as he high-fived me after almost every word. It was also a reminder that, like every child, he desperately wants to be hugged and told how wonderful he is.

That, at least, I can do for him.

The Reality - The MDT Meeting

As MDT meetings go, it was a good one. Everyone was there almost on time and the psychologist did a good job of explaining the test results. I was particularly encouraged to see both C.J.'s teachers taking notes throughout and to see their nods as something the doctor said resonated with them.

At one point she noted that we needed to be careful because his verbal skills might mean that he is able to parrot back the words of an idea they say to him without actually understanding what it means. His teachers simultaneously went "ahhh." It was one of those lightbulb moments you see often in these meetings, when a teacher or parent suddenly sees a pattern of behavior or interactions in a whole new way. As a SPED teacher, they are moments I value because it means that people have not only heard the diagnosis but are starting to act upon it. As a mother, it reinforced my belief that we have been lucky in the teachers with whom we are going through this process.

The team accepted the diagnosis of a Nonverbal Learning Disability and agreed to pursue additional testing as suggested by the doctor. C.J. will have an IEP that provides counseling focused on social skills and specialized instruction to help with some academic issues. Everyone will now go away and think about what exactly he needs and we will reconvene next week so they can present their goals and we can finalize the IEP, including the number of hours he will receive.

This is where the realm of the perfect and reality collide. It would be great if C.J. could have 1 to 2 hours a week of work on social skills, but is not feasible. He will most likely receive 30 minutes a week at school and we will look for a social skills group outside of school as well. His teachers have also been working with him on his interactions with others and will now have new strategies to use with him which I'm sure will help.

The hardest part of an initial MDT meeting is often when it's over and you realize it is not the end of the problem but only the beginning of solving it. An evaluation or IEP does not make the problem go away, although it would be nice if it did. You get all this information and come up with a plan for how to help the student and everyone feels great. Then you go home and he does the exact same thing he did yesterday that drove you crazy and, guess what, it still drives you crazy. Somehow just knowing what is causing the behavior does not magically make it so the behavior doesn't bother you anymore. Often the first few months after identification can be the most difficult for families and teachers because we are suddenly focused on the problem in a way we weren't before and because there is this expectation that everything should be better now that we have a plan. No matter what supports you put in place, it will take time for everyone to see the impact so hanging in there is key.

My solution today? I came home, made a quick and easy dinner, and then spent a long time simply enjoying who they are. We all sat around the table and colored pictures for a book we made, Porkypine Cartoon. We also read two chapters in our latest bedtime book. Well, C.J.'s brothers and I sat while he danced continuously around the room, stopping by occasionally to add some color to our world or ask a pointed question about the story.

But hey, at least he's a great dancer.