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.

The Theory Behind Identification

The mechanics are simple. A psychologist (or speech-language therapist, or occupational therapist, etc.) meets with the child one-on-one and administers a series of tests. The test-giver then sits down and looks over the results, scoring everything and coming up with a set of numbers that tells you how your child did in comparison to the rest of the known universe (well, at least our little corner of it). They then send their report outlining the student's strengths and weaknesses back to the school, where the SPED Coordinator processes it and schedules a Multidisciplinary Team (MDT) meeting.

The MDT is made up of a diverse group of people, including minimally the coordinator, the student's teacher, the school social worker/psychologist, any other related service providers and a SPED teacher. At the meeting, the MDT (adults only at C.J.'s age) reviews the findings. If a disability is identified (so if there is a large enough gap between how the student should be achieving based on their abilities and how they are achieving) they then develop an Individualized Education Plan (the IEP) to serve the child, including goals they will need to achieve that year and accommodations that will allow them to be successful at achieving those goals.

It is a beautiful system on paper, one that would result in all students with IEPs sailing through the rest of their school years completely at ease with their surroundings and achieving at high levels. The reality, however, is often much messier, with stressed-out parents and over-whelmed teachers meeting to try and determine what is feasible to do for that child (the ideal is out there but not anywhere near possible at this point). Especially in places like DC, the needs of students (those with and without IEPs) far outstrip the resources of the school system. I have seen teachers go to heroic lengths to reach out to and help students, but it is often done on their own time and their own dime. Teachers at our school average a 55 hour work week and there is only so much more any of them can do. The other problem is that to be identified for extra support students need to have already fallen behind, so teachers expend a great deal of effort trying to get students back to where they should be, much less moving them forward.

There is a new model out there that is trying to fix this. Response to Intervention (RTI) is based on the simple idea that we should catch students before they fail, not afterwards. In this model, which we are beginning to implement at my school, students are assessed at the beginning of the year to identify those at risk for failure and a series of interventions are put in place to support them. Ongoing progress monitoring identifies students who still struggle and they receive additional supports. Those who require even more support are identified the same way and receive IEPs. The theory is that the number of students needing IEPs would drop from 10% of the school population to 4-5%.

The Details

C.J. was diagnosed with a Nonverbal Learning Disorder (NLD). This means that he operates very well in the world of words but struggles with non-verbal cues and more abstract ideas.

Academically, the problems won't really set in for a few years. Learning to read for him will be easy (and he is already well on the road to that). He will struggle with ideas like cause and effect and more complex interpretations of what he reads. In math, he'll be fine until he gets to the higher order geometry and algebra. Luckily, his Verbal IQ is through the roof so he'll be able to compensate by talking through ideas and problems, some of which he already is doing himself.

The real challenge right now is with social interactions. Most estimates show that at least 65% of communication happens non-verbally, through tone of voice or expression. C.J. does not pick up on those cues and this can have a dramatic impact on how he interacts with the people around him. He will need to be trained to recognize what people are telling him without words, not an easy process.

He also doesn't generalize well. So for C.J., a concrete explanation for how to act in the doctor's office will not necessarily translate into his knowing how to act in the dentist's office. Every new situation will be stressful because he won't be able to look back through his memory and make connections to similar situations from before.

The ADHD diagnosis is currently listed as a Rule Out. This means that he has all the characterstics of it (the psychologist apparently spent a lot of time following him around the room during testing) but she was not willing to give him an actual diagnosis. This was because he is young and also because it is unclear how the NLD might be impacting his behavior.

She recommends doing a neurological exam to see if there is an organic cause for the NLD (damage to the executive functioning area of the brain is the most common) and to get more input on the ADHD diagnosis.

I think that is all of it. I'll write more after we have an IEP hammered out.

And so it begins...

Transitions, I keep telling myself, are a normal part of life. I have had many thus far and have survived them all. I've transitioned from city to city and school to school as my family moved during my childhood, from high school to college, from college to grad school and then into the working world. After several years in the "real" world, I made another transition when I realized I wanted to go to work everyday and SEE the impact I was having right in front me. I went back to grad school and emerged into my new life as a special education teacher. I've also transitioned from single, to dating, to married and to parent. None of these transitions have been without setbacks, but all have been full of rewards that made them more than worth the effort.

On Monday at noon, I will be making my newest transition. This will be the first in a long time that I did not actively seek and which would not have been my choice. It is also a strange convergence with a choice I did make 10 years ago when I switched careers. In a meeting at the school where I am the Special Education Coordinator and which my two oldest sons attend, I will move from the teacher side of the table to the parent side and help to draft my son's first IEP.

I would like to say that my years in the SPED world have made this transition easier and I'm sure it has in some ways. I understand all the terminology coming at me in a non-stop stream, which makes it less overwhelming. I also know how hard the teachers at our school work to help every child achieve, which gives me comfort. But on a basic level it makes no difference at all. This is the child that I gave birth to and rocked to sleep and have taken care of when he was sick. Every parent reaches a point where there is something for their kids that they can't fix with a bandaid and a kiss, but it should not come this early.

Is it a surprise? Probably not. C.J. was different from birth, harder to manage and a constant challenge to our parenting skills. We sought help when he was two, looking for new strateigies to use with him and that helped. For the last two years, we've been living in the "maybe he'll grow out it" world. We've celebrated every milestone that seemed to indicate a change for the better and worked harder on areas where he didn't seem to be making progress. When things spiraled at school this year, we made behavior plans and talked to his teachers about ways to help him cope in an room with 17 other Pre-K4 students. When things came to a head with incidents that could not be written off to 4 yo high spirits, we signed the consent form thinking that more information and strategies could only be a good thing.

Over the next few weeks, we prepared ourselves for conversations about behavior modification and a recommendation for further testing when he is 6 if there was no significant improvement. We did not, and I think could not have, prepared ourselves for the report that came to us showing a 40 point gap in his IQ subtest scores or the label of Nonverbal Learning Disorder that came with it. The high probability of ADHD and recommendation for a neurological evaluation was less surprising but still not easy to hear.

Is this the end of the world? Definitely not. He is young and testing on children under 6 is by its very nature imprecise, I believe, because they are still developing in so many ways. This gives us a snapshot of where he is now but is not determinative of where he will be in 2 years, when I will insist he is completely reevaluated. It doesn't define him for us or take away all the wonderful things that make him who he is and it will never negate the joy I feel watching him sing and dance around the house with his brothers or the comfort of having him snuggle into my lap for some love.

It does give us insight into why he acts the way he does and gives us and his school a whole new set of strategies to put in place to help him now, which can never be a bad thing.

Transitions, I keep telling myself, are a natural part of life. That they occur is not significant, but how we respond to them is. On Monday at noon, I will become the parent of a student with an IEP. But I have always been and will always be the mother of a wonderful little boy first.