Digging Out

It snowed here last night. Not the kind of snow that is beautiful and fluffy, but the kind of snow that is icy and dangerous. A good metaphor for what we've been dealing with these past few days.

There are so many beautiful parts to K. Some things that probably wouldn't exist if she wasn't autistic, and that I am loathe to wish away. I have never said that autism comes without it's challenges, or that there weren't times I screamed at the universe to just take it away. But, as K's grown older, and I've grown as her mother, I've learned love and acceptance are the only true paths to happiness, for K and myself.

But there is one thing I just cannot accept, and that is the anxiety.  Whether it's part of the autism, or something unto itself, if I could "cure" anything that's what I'd choose. Anxiety seems to be the one thing that I cannot accommodate. No matter what I do, the ways in which I try to make sure K is comfortable in her world, it is relentless.

It makes my child scared to decorate the Christmas tree, because what if an ornament breaks (even though we say it's not a big deal if one does.) It makes my child not want to leave the house, because what if something bad happens? It makes my child cry for hours on end, most of the time unable to tell me what is making her feel so awful. She just doesn't know.

"I don't know, mommy" are the words I hear most often. There is her feverishly rubbing her belly, up and down, crying that she doesn't know what is wrong. Why she is nervous. What I can do to help. Anxiety isn't a "behavior". It isn't something that seems to have a cause and effect.

For the past several days, things have been getting worse. To the point that we cannot leave the house. Even thinking about taking a shower, the first step to going anywhere, leaves her frozen. Sobbing. My verbal child has began scripting a lot of what she says, unable to find words for what is happening to her. Unable to put together sentences of her own, because she is under such attack. There are no moments of rest for my girl. No hours in the day when she isn't ravaged by something so unforgiving. Watching her slide down this rabbit hole, and feeling helpless to stop it, is not something I'd wish on anyone.

Mostly, I don't wish it on K.

We've tried so many medications. Some work for a while, some not at all. We have a doctor who is unwilling to try two meds at a time, so we are now on a quest for someone who will. She's been weaned off her meds to get a baseline, and now we are under the wire to find something new that works, and someone new who will work with us.

When we saw K's anxiety being made worse by school, we fought to change her placement. When I've seen her anxiety made worse by a certain therapy, we've stopped it. But right now, I have no clue what is making it so terrible. A storm has come, and we are trying our hardest to dig out. I want to see more of my beautiful K, and less of the dark cloud that has taken over.

Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

"I Love My New School!"

K started at her new school this past Monday. Admittedly, I was nervous. Sure, I knew in my head this school was a good fit, but you never really know until your child is there. I am worst case type of person, so I just had visions of giant meltdowns swirling about my head all day. It's just my Yankee pessimism, what can I say.

I'm used to K getting home from school and being in a mood. Wanting to be alone. Hating life. On Monday, none of that happened. Instead I just heard how "awesome" her day was, and how much she loved her new school.

Loved. 

My child, who can find the bad in a candy store, had nothing negative to say about her new school. At all. Not about the kids. Not about the teachers, or the work. Nothing.

I know that this might be the honeymoon period, but I also think she's finally somewhere she feels comfortable. Our advocate described this school as a "big hug", and she was right. I think the people there know how to educate a child like K, and I think that makes a huge difference.

I am excited to see how she continues to do at this school. Of course, I'm still a tad anxious about the whole thing, just because we are coming off two inappropriate placements that didn't end well, but I really do have high hopes.

Hope that K has finally found the place where she belongs.

Reality Check

As you know, we have been going through the painstaking process of trying to find K a new school, after the district agreed to place her privately. Getting them to agree to that was a huge victory, yes, but I didn't realize just how difficult it would be to actually pick a school. I realized just yesterday, though, that the only reason it was hard was because of my own expectations, and failure to accept what was right for my child.

The first step in this process is finding K a 45 day placement. This is a school that will evaluate her needs, and at the end of the 45 days they will tell us what kind of permanent placement is appropriate. However, it could also end up that she just stays at this intial school, and so we wanted to make sure wherever we sent her, we'd be willing to send her long-term, as well.

There were lots of things my husband and I thought we wanted for her. A school with an emphasis on academics, because we didn't want her to fall even more behind. A school with other girls her age (this one we knew was a reach, but a person can dream). A school that was pretty much exactly like the public school, just with a more understanding staff, who actually got autism, and anxiety, and learning disabilities.

We were afraid of her being treated with kid gloves. How would she ever be successful in life if she wasn't pushed? If we didn't set the bar high? Sure, we wanted her in a setting that would ease her anxiety, but we failed to realize that in order for that to happen, things would really have to change. We were 100% ready to put her in a school that we worried would bring back our overly anxious, frustrated child. We were just hoping things would be OK because it was at a specialized school. In reality, though, the type of school doesn't matter, if the atmosphere is too overwhelming. Even the best staff can't magically make a child change into someone who isn't affected by what is going on around her.

Yesterday, K had the chance to visit the one option we thought was not going to be a good fit. In theory, it was perfect. A stress-free envioronment. Kids are allowed to work where they want, take breaks whenever they want, and where even the most benign sticker charts don't exist. The staff does everything in their power to make the school day as anxiety free as possible. The kids are even encouraged to bring in comfort items from home. It sounds great, but how does it prepare my kid for life? Even though we have a child whose anxiety could probably power a small village, my husband and I were still caught up in needing K to be placed somewhere that looked like a "real" school. Ironic, since "real" school didn't work for K, and we fought tooth and nail to get her out.

There was even part of me that thought K would hate the school, herself. I was fully prepared for her to charge out at some point, saying there was no way she was going there. During the hour she spent visiting the classroom (without me), I sat in the cafeteria imagining the giant meltdown she was probably having, being soemwhere that was such a bad fit.

What I was not prepared for was how she actually felt.

When I came back to the school after her visit, the first thing she did was throw her hands in the air and proclaim, I love this school! When can I come back!?

It was the first school she said that about, of the several we've visited. My husband asked if it was just because she spent more time there, which is a valid question. However, the fact that the "other" schools had things like swimming pools, and wood working shops, and class pets, and she liked this one better (which has none of those things), is very telling. The other schools she liked because of those "extras". This school she liked because of the kids, and teachers. She felt safe there. Not even the promise of a swimming pool could trump that.

It's also just a calmer environment than the other schools we've seen. The classes are very small, just 4 kids and 2 teachers, each. Pretty much everything is the opposite of what we've dealt with before, and that's probably what K needs.

It was a tough thing, to really sit down and be honest with myself about this whole school search. As much as I tell myself I've let go of all my dreams for K, clearly I haven't. I've always been honest with myself that inclusion just doesn't work for my kid, at least not now. But, I had to take that a step further, realizing any school that is going to fuel her anxiety in any way, is not a good match. It's just something else to accept. Sometimes it's hard to reconcile that the kid who just went for a bike ride alone, is still miles away from her typical peers. At least when it comes to school.

So, tomorrow K goes back for a 4 hour trial at this new school. If all goes well, that's where she'll be going. I know in my heart it's what's best...I just have to let my mind catch up. Letting go of dreams doesn't just happen in toddlerhood, when you are first faced with diagnosis. I'm just beginning to realize that now. K will be who she is meant to be, and I just have to keep reminding myself that. It's what she needs, not what I need.

Right now, she needs this school.

School Choice

I have to admit, I thought choosing a school for K would be...easier. I really thought that one would stand out against the rest. That there would practically be a giant, red arrow pointing down, letting me know, this one was it.

Right now we are choosing a school for an initial 45 day placement. We really need more data on K's emotional health, in order to determine the best permanent placement. The school we choose will be capable of collecting that data, and at the end of the 45 days, we will be told what type of environment K needs to be successful. Picking a school for this temporary placement should be easy. It's not as if we are signing K's life away. It's only for a couple months.

But, it's still excruciatingly difficult.

We toured one school that has a pool. Now, K would live in the water if she could. Water and swimming are her things. I've joked that if she could just be taught while in a pool, everything would be great!

However, this school has students that are a lot more behavioral than K. By more behavioral I mean they use swear words I don't even use, and are more aggressive. Because K has such a low tolerance, at times, for other children, and can be a very anxious kid, a more chaotic classroom just doesn't seem like the best fit.

But, they have a pool. In K's eyes, that's all that matters. She told her counselor she could just ignore the other kids, but I'm not so sure...

Of course, this school has lots of other great qualities. I like the way the school is run, the classes they offer, the fact that there are other kids her age. There's even another girl. It is also run as a school, and not so much a therapeutic center. This appeals more to my husband, for whom education is paramount, not that I disagree. I think K has a lot of potential, and though she does have some learning differences, she also needs to be somewhat challenged to move forward. She is definitely a child who rises to the occasion...or doesn't if it's not expected.

I was able to meet the 3rd grade teacher, and she was extremely nice, and laid back. Although we did witness more intense behaviors (a boy swearing at the teacher, and running from class), what was nice to see is that the boy wasn't immediately pounced on, restrained, or anything else. They have people who, if a child bolts, lead them into a sensory room (not a seclusion room, I was able to see it) to calm down. Restraints are not first line of defense, and they know the kids, and what they will do. They know this boy won't leave the building, so they calmly just have someone monitor him, and take him for a break.

So, while I don't love the idea of K being in a class with kids who seem more intense behaviorally, it was nice to know that if she did have an issue, it wouldn't be a big deal, like it was at her previous school.

Of course, we also have ASD stuff to deal with, and I am not 100% sure how this school would handle that. The pre-teaching. The prompting. There is one teacher for the 3rd grade class, and while there are not that many kids, K is used to either 1)having her own aide or 2)being in a class that has a low student:teacher ratio. I am not sure how she'd do without extra adult support.

When it comes down to it, this school has a population made up of kids who have more mental health issues, and their needs might differ a lot from K's. K is a high functioning kid, but still needs some "autism 101" stuff, and if the other kids don't, will it be done? The lack of these things are always the cause of K's own behaviors.

But, they are a specialized school, and I am used to dealing with public schools, who don't have the capability to really cater to each child. If K did go to this school, they might be able to provide more easily what she really needs, and within a more typical "school" environment.

Then there is choice #2. This school is a completely different from school #1. It is 100%, first and foremost, a therapeutic environment. Honestly, if K went here, I would have no worries. They have a 2:1 student/teacher ratio, and the ability to easily go 1:1. Kids are allowed to choose where they do their work, if they are having trouble in the class, and everything possible is done to make each day stress free. As our advocate described it, it's like walking into a big hug. They deal with kids who have high anxiety, and don't admit students who have intense behaviors, so it's a much calmer setting.

They don't do things like reward charts, because they feel even that can cause a kid's anxiety to rise. If they promise something, they deliver. They don't take anything away. There is no earning. When I say this is as stress free as it gets, I mean it. There are gardens the kids can tend, every child gets an iPad for school, and specials like music are a choice. If a kid doesn't want to go, they aren't forced. I mention music because K, although she generally loves music, has a difficult time in a large music class. Just too loud. Here, she could either skip it, or they would go so far as to allowing her to do music 1:1.

This all sounds awesome, right? Especially for a kid who has learning issues, and anxiety issues. It seems like an easy choice...

Except, nothing is easy. My husband isn't totally sold on this school. They don't push academics the way he would like. K would be the youngest kid at the school, and in a class with one 4th grade boy, and one 5th grade boy. There are no girls close to her age, who could act as peers. The school does have a few girls, but we were told on our tour that K would not have the opportunity to interact with them.  The school is also on the campus of a psychiatric hospital, which makes the husband uncomfortable. He can't separate the school from the hospital, so to him, it would be like sending her to the psych ward. However, since we are looking for data on her emotional health, is there a better place than somewhere dedicated to it?

Again, it's just an initial 45 day placement, but because 1)we don't want her going through too many transitions and 2)things aren't looking too good on the permanent placement front, we are also looking at these places as potentially being where she stays beyond the 45 days. That's what makes it a more difficult decision. Which place would be best for K long term, if it came to that?

Unfortunately, we have a child who doesn't fit any one mold. She isn't intensely behavioral, and a lot of schools are meant to dealt with those issues. She also isn't a kid who necessarily needs a completely therapeutic environment, either, and academics are still something that are pretty important to us.

Of course, we are parents, and every parent has tunnel vision when it comes to their kids. We see one path, but in reality that might not be where K is headed. We don't have a crystal ball, so we have to guess where she's headed, and what she needs. Especially being so young. We just don't know her trajectory, yet. There's still a big part of us that firmly believes K is college-bound, and can find a career she loves, and be successfully independent. We don't want to yank her off that path just yet, but then again, are we just fooling ourselves...

If you've stuck with me this far, I am grateful. I wanted to share what we were going through, and how things aren't as easy as you might think. Getting your kid out of the school system when things aren't working out, can seem like a dream scenario. But, everything that comes after is no cake walk. At least, it hasn't been for us.

This coming week is our April vacation, and the following week we are taking K to tour school #2. After that we hope to make a decision rather quickly, because she really needs to get back into a program. It's hard when you feel your child's future is completely in your hands, and your hands alone. I really don't want to mess this up.

The Journey

I've been a bit overwhelmed lately.

Just a bit.

To make a long story short, we went to battle with our school district over K's placement. We were just d-o-n-e, done. There were a few incidents, that for K's privacy I won't go into here, that completely and utterly broke down trust. She ended up being scared of going to school. Scared of saying anything to any adult at the school. There was a change in her demeanor, from the first few weeks when things seemed to be going well in her new class. Things happened that the school thought were not a big deal, that were the biggest deal to us. So, we hired an advocate, and pushed for out placement.

At first, things didn't go well. If there ever was an us vs. them moment, it was our last official IEP meeting. When the school chooses to bring legal counsel, you know the gloves are off, and working together, collaboratively, is off the table. At least, that's how we felt, as parents.

We spent a nail biting week, waiting for any response from our district. A week that literally almost sent me over the edge, and that's not an exaggeration. A week where things went downhill fast, and where I thought we'd end up living in a ran down by the river, because fighting for our child was probably going to cost us everything.

Our advocate is great, don't get me wrong, but I was still scared to death. We had a good case, but our distrcit wasn't reacting in the way everyone assumed they would. Our pediatrican had pulled K from school at this point, saying she was exhibiting signs of PTSD, and so I had a child out of school, and radio silence from the district. We did all we could to garner a response, and waited. I don't know how many years that one week took off my life, but I hazard to guess it's no small number.

But, then, miraculously, everything turned around. The Superintendent got involved, and we had an emergency meeting with her, the head of special education, and the district psychologist (the one person I had been asking for at our IEP meetings, and the one person they always failed to invited). And they really listened to us. And agreed with us. And...we prevailed. Like, really, truly prevailed. I still have a hard time believing we won, and am always waiting for the other shoe to drop, but thus far, everything has gone well.

Currently, we are touring private schools for K, and she is recieving home tutoring in the interim. Or, she was until our awesome tutor got selected to sit on a jury. Here's hoping K clicks with whomever we get next, just as well. School selection is taking a lot longer than I anticipated. I figured we'd bang out the tours, and pick one within a couple weeks. So far we've only toured one school (with another on the docket this week), and I've yet to even hear from several others (one of which I am really liking for K, inparticular). Next week is April vacation, so this is definitely not going as fast as I would like, but at least we have a plan.

At the end of the day, we did end up spending a good chunk of money on a really great advocate. Getting K into the right program is our priority, though, and even though no one likes to write a big check, it was more than worth it. We had a good case, but hiring someone who knew the ins and outs of the law, and who was a calm voice in a meeting (when all I wanted to do was scream and cry), was priceless.

Hopefully, we can move on and find a great school for K. Fingers crossed.

Defcon 5

It's Friday. School vacation week is winding down, but things here are winding up. I saw it coming yesterday. K was very agitated. Easily upset. Frustrated over everything. The anxiety was taking over. Taking my girl away.

As much as she isn't a fan of school, she needs that routine. No matter how hard we try, we just can't duplicate it at home. It just doesn't happen. Especially with three other people, with three different schedules, and three different sets of needs. I tried to plan things that K would enjoy. I made sure we alwasy had the iPod and iPad. We had back-up plans. Exit strategies. I was on high alert.

But, none of it really matters. I can't make everything OK. I can't immeidately remove her from every not-so-great sitution. This is reality, and reality is anything but predictable.

I have been browsing this site, lately. It's something that has been mentioned to me a few times, and it's a program we'd like to see used in Katie's educational setting. Is it the answer we've been looking for? Will it be the thing that finally settles my child's world?

I don't know. But I do know it has to be better than what we are all doing now.

A 9 year old shouldn't be depressed.

Filled with anxiety.

Feeling that everything she does is wrong, and that no one likes her.

She shouldn't feel like the world is spinning out of her control.

The future scares me, if we keep going on this path.

We have an IEP meeting next Friday. It's make or break. It's all come down to this one meeting.

I am hoping that when we exit the conference room, we'll be on a path where Defcon 5 is a thing of the past. Where I am not typing from my bedroom because I am "hiding out" with my girl, who can't handle much of anything at the moment.

My kids are my world. I will go to the ends of the earth for them. I wish I could share everything, but, for now, that's just not possible.

I hope that this time next week, I am bringing you some better news.

Fingers crossed.

Rookie Mistake

Last week I took the kids to an indoor play space. They were having "Carnival Days", which meant the gymnastics side of the facility was open, along with the regular play area. Usually I avoid taking K to these places, but since the gym has a giant foam pit, which she loves, I figured we'd be OK. And B, well he'd live at these play spaces if he could.

For the most part, we had a great time. K trampolined and foam pitted it up, and B ran around with his little cousin, E. It was busy, but not overly crowded, and I was glad the kids had somewhere other than the house to release their energy.

Because it was Carnival Days, they  had different activities and games for the kids. Most of the stuff I knew wouldn't interest my kids, but the one thing I was looking forward to was the make your own sundaes they advertised. That is right up their ally.

Unfortunately, the thing I figured would be the best part of the day, was the thing that shot us straight to...well...you know...

You see, when you say "make your own sundaes", there are certain expectations. Like, you actually get to make a sundae. Not have an employee just bring out trays of half melted ice cream, and offer a choice of non-sundae toppings. Like Sour Patch Kids, and Mike and Ike's.

And I knew. I knew when I saw the whole set up, this wouldn't be good. B, he was fine. He'll eat any candy you put in front of him. My niece, she was fine. She was just happy to get ice cream at all. K? K had her own ideas about make "your own sundae", and Sour Patch kids on top of melted ice cream didn't cut it.

It's not that she's ungrateful. It's just that after waiting in a long line (which always=anxiety), and then discovering it wasn't what she expected (heck, it wasn't even what I expected), she couldn't handle it.

I sent her back to our table while I waited for B. I was trying to remove her from the sundae area, knowing sending her back alone was not a good idea, but I didn't have any other options. When we got back to the table, a minute after she did, I found her covered in ice cream.

She had punched her sundae and thrown her spoon across the room.

She was done. Yelling...crying...etc...

And, of course, every eye was on us. The woman at the table next to us actually made faces. It's one thing to stare, but to actively make faces? That is a whole other level. That is her really wanting to know how disgusted she is with my kid. It's mean.

And here is where I make a giant mistake.

I didn't leave right away.

B and his cousin were enjoying their ice cream, and I figured I could placate K with her iPad for a while. It almost seemed to work, but, internally, she was escalating. It had gotten busier and louder, and eventually, it came to a head. She announced she was leaving, it was too loud, and took off.

I had to quickly gather our stuff, and run. At these play spaces everyone gets a wrist band, so they know which kid belongs with which parent. You can't leave until they cut your wrist band off, and they see the parents and kids together.

K just wanted out. She tried to open the door, and started kicking it when she couldn't leave. We finally got our bracelets off, and she took off, again, slamming into a trash can on the way. This caused an employee to start yelling at K, stare at me, and make snarky little comments. It caused the other families sitting in that area, getting on their shoes, to stare as well. I wish I could say it doesn't bother me, but it does.

We ended up getting our shoes on in the parking lot. I wanted to cry.  I was angry at the employee for making things worse. When she yelled at K, it just caused her to bolt again. I was angry at people for staring at us. I was angry for caring they had. I was upset that I couldn't help K, and knew the rest of the day was lost to this. I knew the anxiety and anger K felt was going to stay with us all night.

Mostly, though, I was angry at myself for not pulling the rip cord earlier. The day had been going really well up until that point. I got cocky. I thought things would be OK. Or, I talked myself into thinking things would be OK. I know better.

K will be 9 in two weeks. I should know better. 

It can be a fine line between hoping for the best, and knowing when to jump ship. At least for me. Maybe 2013 will be the year I master these things.

One can only hope.