With Them, I am Truly Happy.

I read a blog post recently that rubbed me the wrong way. Maybe it was just the way I read it, since everyone else seemed to love it. It made me angry, though. And sad. Sad for the child on the other end of the blog.

If there's one thing I want people to know, it's that they should never, ever feel bad for me. My children are not a constant source of pain. Their mere existence doesn't make life hard. I don't want to switch lives with someone else, just to escape raising children with special needs. Being around them doesn't drain me of energy, making it hard to breathe.

Life is hard for everyone. Not just those whose children have special needs. Everyone. What we all search for are the good things in life that bring us joy. That fill our hearts. That make us look forward to waking up everyday. For me, I get all those things from my kids.

When I look at my kids, I don't see their list of diagnosis. I don't them as people making my life hard. I don't blame them for any anxiety or pain I ever feel. I see them as pure joy. As unconditional love. As the reason I get out of bed every morning. Sure, life isn't perfect, and we have hard days just like anyone else, but I never feel the need to escape them. They aren't parasites sucking away my happiness. They are my happiness.

Period.

People always say that parents of children with special needs need to take time away. Recharge their batteries. Step away from their kids, so that they can come back refreshed, and ready to handle anything thrown their way. Well, I refuse to believe that is the answer. Spending time with my kids, that is what recharges my batteries. That's what gives me the energy to fight for them, and make sure their lives are as full as possible.

Sure, I go out with friends, and a date night here and there is always nice, but I don't do those things to get away. I do them to reconnect with the people in my life, because those relationships are important. Not as a way to escape my life. Definitely not as a way to escape my kids.

I think we need to be careful with our words, because sometimes we come off as blaming our kids for all our troubles. Sometimes the only message we convey is that everything is hard, or that our children have beaten us down. That makes people thank their lucky stars they don't walk in our shoes, and that's not the message I want to send. Not to the general public, and especially not to my kids. I'm sure I sound ridiculously self-righteous, but I'm OK with that.

Maybe some do blame their children, and I'm sure there are parents who would trade places with someone else. But that's not me, and I wanted to make sure everyone knows that.

They give me strength, and I would follow them anywhere. 

Gushing

If you are anything like me, you cringe when it's time for open house or parent/teacher conferences. Open house seems benign enough, right? Until a few kids from your child's class make it their job to tell you everything your kid has been doing in school lately. Crying. Knocking chairs over. Just being weird. Why does she do this? Why doesn't she do that? Then there's always the quick talk with the teacher, different from the chats she has with other parents. There's no gushing about how well things are going. It's mostly therapy related, or things they are working on to help your child make it through each day. You walk out, happy it's over (while usually trying to wrangle your overstimulated kid.)

Parent/teacher conferences are more of the same. Sure, you get to look at some work, but the majority of the conference is spent talking about your child's weaknesses. Behavior issues. Everything that's going wrong. Last year I was even asked to make time for an "extended" conference for my son. Not the 10 minute, in and out, talk, but 30 long minutes of listening to how everything was going wrong.

You get home, check Facebook, and notice everyone else has posted these status updates about how awesome school is going for their kid, the wonderful things the teachers said, how their child is practically on the fast track to Harvard! You close down your computer, and give your kid a hug, wishing your conference had been a tribute to your child's strengths, instead of a summary of the opposite.

Last night was open house at K's new school, and I almost didn't go. I have what I like to call "school PTSD" which makes every bump in the road seem like a giant road block, and every phone call from school seem like the beginning stages of another program going down the drain. In my mind, I am always waiting for the other shoe to drop. For people to pull me aside and tell me how poorly things are going. That the next phone call will be the one telling me we are back to square one, when it comes to finding an appropriate education for my child.

K had a couple rough days at school recently, and I was feeling down. I didn't want to attend an open house where I would be bombarded with yet another laundry lists of everything my child can't do, and every weakness she has. I didn't want to see looks of pity on the teacher's faces. I've already seen enough of those to last a lifetime.

At the last second I decided to go. I almost turned around on the way there, and sat for a few minutes once I did arrive, working up the courage to walk in. I was so nervous. I felt like I'd be assaulted at the door by stories outlining how things weren't working out. I tried not to make eye contact, but in a school of only 26 kids, it's hard to disappear in the crowd.

As soon as I sat down, people started introducing themselves. The woman who teaches K art. Her OT. A few other staff members. And they all started gushing over how much they love working with Katie. Yes, gushing. Telling me story after story about my child. Not stories about things going wrong, but stories about how well things are going, and what she brings to the school. How they look forward to their time with her. Are excited to see her each day. And they meant it.

When I say everyone I spoke with focused on K's strengths, I mean it. I know there are times when K struggles, but those weren't the stories I heard. They even looked at her choosing to do work under her desk as a positive, whereas before it would have been a huge issue. I had to hold back tears as I heard about her interactions with the other kids. I rarely hear anything from K about school, but she has a whole life there that is just amazing.

Amazing.

I think I was the last parent to leave, when I thought I'd be the first person trying to escape. For once, I left with a giant smile on my face. I can't remember the last time I left any school function feeling anything other than sad for my kid, and throwing a pity party for myself. All my fears melted away. I realized the little bumps in the road really are just little bumps. That K is at a place where the focus is finally on what she can do, and she is appreciated and cared about by those around her. It was like a weight was lifted from my shoulders. I could stop worrying about her placement. I could stop cringing every time the phone rang. I didn't have to browse the Department of Education site on a daily basis, making a list of other programs that might work, after this one inevitably failed.

A bit of that "school PTSD" fell away. Open house ended up being a game changer for me, and I am so glad I went. I had built it up so negatively in my mind, because it's hard for me to believe any program will go well. That anyone would see my child for the great kid she is, and not as a problem child who no one wants around. Let's face it, last year was tough, and I am still dealing with the everything that happened. It's nice to finally be able to relax, just a little, and know K is somewhere she is happy, and thriving, and an important part of the school. Where she is valued, and loved.

If you are anything like me, you know how miraculous this all feels, and how a placement like this is something every child, every family, deserves. It was a long, hard fight, but so worth it in the end. For the first time ever, I was the one posting a status update about how everyone gushed over my kid, and it felt really, really good.

Happiness

It's only September, and I've been fooled into thinking "maybe this year will be the year"  before, but maybe this really will be the year...school goes well.

I remember the beginning of last year for K. Third grade, in a typical classroom, with a lot of supports. Early in the year, her teacher told me how well things were going, and how she hadn't seen any of the issues we'd seen in 2nd grade. Part of me felt defensive...I swear there were issues! But, another part of me felt that maybe maturity was on our side, and 3rd grade would be the turning point. A lot of people say 3rd grade is the make it or break it year. Kids are required to be more independent in their work. All things social get even more tricky. It's really just the year your child goes from baby to big kid. Scary, yet I had hope.

Of course, things didn't go as planned. Third grade didn't continue to go well, past those first few weeks. K does the opposite of most, where the first few weeks are GREAT, and then we hit a rough patch. She's always excited to start school, and we never have that initial issue with transition. Probably because those last few weeks of summer vacation are so all over the place, she's glad to have some routine back.

But, after those first few weeks of 3rd grade, we definitely hit a rough patch. Long story short, she went from mainstream, to autism class, to home tutoring, to private placement. Yes, 3rd grade was the make or break year for her, and unfortunately the latter happened. I've admittedly had a hard time adjusting to her not being three minutes down the street at our neighborhood school, but that's my issue, really. Sometimes it's hard to let go of every dream, all at once. But, I do realize my dreams are mine, not hers, and I'm working hard to get over myself.

Right now, she is doing so well at her new school. Amazingly well. Of course, nothing is ever perfect, but this is leaps and bounds better than where she was before (and I want to add that her 3rd grade teacher was awesome. It wasn't her fault that K wasn't successful in the mainstream. Since first grade, K has been blessed with fantastic teachers. I think that helped her make it as far as she did.)

This past week alone, I've received such positive reports from two different people at her school. How well she is doing. How engaged she is. How she's even reading out loud in class (which is huge for my reading challenged kid!) She is participating, and happy. Basically the polar opposite of before. It helps that her new school is year round. Even though she missed a couple weeks this summer because of camp, she still had way more routine than any previous ESY. If there's any kid who thrives on consistency, it's K.

K has a lot of potential, and I want to make sure she achieves everything she desires in life. She has big dreams, and I hope everything we're doing, the program she is in right now, plays a part in her seeing those dreams come true. I do struggle sometimes, knowing inclusion (or our district's idea of inclusion), didn't work. I struggle figuring out what placement will work for her long-term. But, for now, I'll just take the happiness this new school has brought out in K. She deserves it.

I Shall Not Admit Defeat!

It's been a week. Or, really, a week and a half. Forget waiting for the other shoe to drop. I think sometime this week I looked up and 757 shoes came raining down.

But, as K's therapist's would say, that's glass half empty thinking, and that won't do.

It all began when I got into a fender bender the week before last. Apparently a red light doesn't mean the same thing to all people, and the woman behind me figured she'd use my car to stop, as opposed to her brakes. She looked at my broken bumper and told me to just get some glue. She didn't want to hear the person in the car with me had whiplash, and decided the best thing to do was jump into her vehicle and drive away. From an accident. Because, you know, why not?

One 911 call later, I filed a police report, called the husband, and had my poor car towed. Thankfully, I now have it back, so I can ring in 200,000 miles as planned. I mean, I am a little over 198,000. I was not happy thinking I might not get to reach the next milestone. It's the little things.

We are not a one car family, but someone, who shall remain nameless, thought he'd save a few bucks and not add rental car insurance to our policy. Let's just say, it's being added now. I always had this idea in my head that we could ditch a car, and just share one to save money. A lot of people do that. We...are not these people.

So, we're cruising along last week, and then Wednesday happened. Let me start by saying I am very thankful my husband decided to work from home that day. I am not thankful I put off taking a shower...

After getting K off to school, my husband, B, and I slept in. It was the one day that week I had nothing to do. We got up around 9:30 (yes, 9:30...I know some of you are murdering me in your heads), I made B breakfast, and while he ate I checked my email (and, OK, probably Facebook and Twitter) in the other room.

One second I hear B talking to our dog, and the next I hear gurgling. Gurgling that I thought was caused by him making a mess with his chocolate milk.

Don't I wish.

I walked into the kitchen and found him on the floor. Drooling. Convulsing. Not responsive in the least. I called (screamed) for my husband, and dialed 911 (two 911 calls in a week is not my idea of a good time).

My kid was having a seizure.

Seizures are not something we've ever dealt with. Quite frankly, I thought we had dodged that little autism bullet (if it is at all related to autism). It was the scariest morning of my life. I literally thought my kid was dying. It took him a long time to snap out of it. He even lost speech for a while. Thankfully he remembers nothing, thinks it's cool he got to ride in an ambulance, and thought the ER was fun...they had saltines and ginger ale. Party down.

I really don't think paranoia begins to describe how I've felt since. I don't want to leave him along for 2 seconds, and have forced him to sleep with me all this week, thereby forcing my poor husband to the couch (but he has a dog to snuggle, so don't feel too bad for him).

I've tried not to Google grand mal seizure. I've tried convincing myself that B might be one of those kids who randomly has one seizure, then never again. We thankfully got in with a neurologist tomorrow afternoon, and I am anxious to just get on with it...whatever "it" might be. I am sure there will be EEG's and tests...protocols for school and camp...I just want all our ducks in a row. I want to know what to expect. I want to know more than I know now.

And I never want to see my child like that again.

Some other, personal stuff went on this weekend that I'm not at liberty to share, but all in all, I've had a lot on my mind, and am ready to hibernate for the winter. I am thankful for some friends and family who understand that I am currently half-human, and who are giving me the time to live in my own little world. Pretty much all I can muster is being a "mom" right now (so, I guess I'm thankful for an understanding hubby, too).

The one light in all of this is that last week we secured a permanent school placement for Katie, which is huge, and wonderful, and takes a giant weight off my shoulders. Not that the universe needed to replace that weight, but that's life. I'm glad K will remain somewhere she is happy, and thriving. One hurdle down, a zillion to go.

But, these past couple weeks have put a lot into perspective. Life is short. Anything can happen. I'm in control of pretty much nothing. So, the things I can control, I will. I need to make sure my family is happy. I need to make sure I am happy. I need to be selective with those I let into our lives, and not live in that glass half empty way. In the end, we are all responsible for ourselves, our actions, our decisions. How we choose to live. What is important, what isn't. What stress is necessary, and what can be left behind.

(Blah, blah, blah, etc, etc, etc, please stop waxing philosophical, says the audience, eyes rolling).

Love,

Your favorite pseudo-blogger (I am, right?)

J

Really, it's OK

I grew up going to our town's 4th of July parade, and once I had children, I was excited to share the experience with them. When K was little, she liked the parade. She would stand watching all the trucks go by, totally enraptured. She'd dance when the bands walked by, collect the candy thrown from the passing floats, and genuinely had a good time.

Until one year, she didn't.

Two years ago she had camp on the 4th of July. I had given her the choice of attending camp, or coming to the parade with us, and she chose camp. Heck, *I* would have chosen camp. They had their own festivities there, and when I say she loves her camp, I mean it.

Last year, I decided not to enroll her in camp for the 4th, because I wanted her to be home with us. Except, she wasn't having it. She couldn't take the heat, or noise, or waiting. She ended up staying with my mom at her house until the parade was over, and I felt bad I hadn't just sent her to camp, after all.

This year I gave her the option of coming, or staying with Grammy. Let's just say, that choice was a giant trigger. Making any decision is always overwhelming for K, so I finally made the decision for her when I saw how hot it was going to be. To say this kid has an intolerance to heat is an understatement, and I knew we'd go from zero-meltdown before we even made it to our seats. She was relieved, I think, after I told her she'd just be staying with Grammy, and I knew it was the right choice.

So, yesterday morning I dropped K off with my mom, and headed with B to the parade. He and my niece had a lot of fun together, especially collecting all the candy, and K had a relaxing morning playing on her iPad somewhere cool, and fire engine free.

Now, I suppose I could write about how heartbroken I was that K wasn't at the parade. Make a big deal out of how autism robbed us of this experience.

Except, it would be a lie.

I won't be heartbroken because she can't sit at some parade. If we always look at what our kids can't do, and equate it with heartbreak and sadness, we are going to end up equating them with heartbreak and sadness, which, no.

Just, NO. 

If tomorrow we head out to the fireworks, and decide that it's not something K can handle, it will be OK. I'll happily miss a fireworks show so I can snuggle with my daughter, and watch Pound Puppies or Littlest Pet Shop on Netflix.

And the last thing I'll be is sad about it.

Relief

I'm breaking my "I won't talk about school" rule. I mean, we all knew it was bound to happen. It's just impossible to share our life without talking about the place my kids spend 6 hours a day.

And it's nothing bad.

I hope.

The week after Christmas break, K started in our district's self-contained autism class. Things had not been going well in her general ed class. Even with a 1:1, and tons of support, the bad days had just gotten too bad. Our team has been great, and it's not for lack of trying, but sometimes you just have to admit when something isn't working, and K being mainstreamed just wasn't.

I wasn't sure what to expect when the husband and I toured the class. I figured it would probably be similar to her regular class, just less kids. That assumptions is also what made me nervous, because I knew class-size wasn't the only difference we needed.

Thankfully, the class was nothing like I thought. Mainly, it's is very sectioned off. There could not be more places to take a break, or do work silently. They have it set up so that there should be no reason for K to bolt. She would never be standing there, deer-in-headlights, with no place to "hide". If she had an issue, there wouldn't be 20 sets of eye staring her down. There are cubicles, and a walled off space with bean bags, and only a few kids in one area at a time. There are sensory tables (K is a big fan of the rice table), and an iPad (though K has been bringing her iPod Touch to school), and just every opportunity to be calm, and stay calm.

In other words, it's made for kids on the spectrum.

Her class also goes to specials alone, which I am very happy about. I was worried they would be mixed with the general ed classes, and it would be too much. The only integrated time K has right now is lunch. Thus far, she has chosen to have quiet recesses inside, too, and I am so grateful they allow that.

I didn't think I'd see a change so quickly, but I really have. K is happy getting off the van at the end of the day. She has been playing with B a ton, as opposed to sitting alone in her room, needing mountains of space. She has been so much more engaged, and talkative, and present. School had been a huge source of anxiety for K. With most of it gone, everything is better.

Hopefully now we can move away from behavior management, and she can really take in what she is being taught at social group, or speech, or counseling. It's always just been trying to mitigate behaviors and anxiety and stress and aggression. For the first time, I see hope. I see her being able to focus on the coping skills, and the school work, and the social side of things. Really being able to get down to the nitty gritty and make progress. It's amazing what happens when a child finally feels safe, and relaxed.

Obviously, we might still be in the honeymoon period, but I am really hoping the good times continue. Everything in this class is so individualized (it is definitely not one size fits all), and I think they will tweak when they need to, and keep her on a positive path. Fingers crossed! I wish it hadn't taken this long to get her to a good place, but all I can do is look forward, and for the first time the future doesn't scare me to death.