A lot has changed in 3 years since I last posted.

I've decided to start blogging again.

It is sad for me to look back at the posts on this blog- it was the most difficult time in my life.  B was so incredibly ill and in chronic physical and emotional pain.  Watching him suffer- watching my family and self suffer- was indescribable.  I think I had to give up writing about it because it was that overwhelming.

Good news!!  B IS DOING AMAZING!!!  He has really grown so much!!  We are ALL doing amazing.  We have moved.  In the summer of 2012.  This was the best decision I could have made.  The school district where we lived would never have been able to meet B's needs.  Little did I know that this move would be great for all 5 of us!  The daughter has met a bunch of great friends- people in our church- she is going to start high school in a few weeks.  The older son has done terrific in school and he'll be starting 6th grade in a few weeks.

B has been attending ABA therapy full time for the past two years.  His behavior is much much improved.  He knows how to walk next to me in a store; he's not constantly wandering off or walking away.  He has far fewer aggressive episodes.   He is talking so much more!  He is eating a wider variety of foods!  He can read and spell and do a little math.  He is learning to tell time and count money.  I am so proud of this boy I could just bust.  He is the hardest working little guy and he is my hero.

We have met new friends.  We bought a house this summer and it has exceeded my wildest dreams of a house I could ever own.  The husband has a shiny new job that he loves.  I have enjoyed mentoring new autism families on the journey.

I have built up a lot of things that I'd like to say, so I expect them to come streaming out in new blog posts soon.  ;)

Letting go.

I've been looking at houses that we might be able to move this summer. Our current place has bad mojo. I don't know how else to say it. We've had a lot of misfortune in the year and a half we have lived here, not the least of which was the break-in. Also there are more practical reasons for moving like the lay-out doesn't work, our house is kind of on a busy street, we have practically no neighbors, and we are not districted to an elementary school that either of my boys could attend.

In my search for houses (we are renters) that might work I find myself searching for something else. It took awhile for me to put my finger on what that was. I went to go drive by a house (that was for sale, but I thought maybe we could convince them to rent to us) in a neighborhood in Chapel Hill. B. and I were on our way home from therapy and we had a few minutes to kill, it was on the way. It was 2:30pm and as I drove into the neighborhood, I saw the kids who were getting out of school and walking home. Some of the big kids were walking with friends. The little kids were walking with their moms pushing the baby sibs in a stroller. That's when it hit me. And it hit me so hard and fast, I had to pull over to cry. I just want to go back. I want to rewind time and have that be me pushing the little one in the stroller and walking my big (but so little) kids to school. It was me. I did that once. Things were very simple and life was predictable and the future was certain.

It's not that I'm having trouble letting go of the past in any kind of regular way that mothers do. It's not really even the past that I can't let go of at all. It's the dream of the future. What I wanted that to look like. What I wanted right now to look like. And the more time goes by, I've come to realize that I can be okay with having my sweet precious perfect son being really very disabled. What I'm not at peace with, and I'm not sure I can ever be, is all of the other ways that my life has been affected and changed.

The husband and I have done a lot of talking lately about ways we can make positive changes for the kids and for us. How can we bring some joy back? A big part of my unhappiness is the total lack of control I have over what happens to me, B., our whole family. In our conversation, this was always the block that came up with any plans we might make to try to get our lives back. The irony is this was the exact reason why the husband had to get out of the military after he served his time. We just had no control over our lives: we had to move wherever they told us, he had to take whatever job they gave, and ultimately doing a "good job" meant nothing. He was deployed very suddenly once when E was a baby. That was that- we needed to be calling the shots for our lives. We had a vision about what kind of parents we wanted to be, and being an absent father was not in that plan. He resigned.

Unfortunately now the lack of control is inescapable. One of our ideas was to move. Watching those kids walk home from school made me think that maybe there would be a situation where I could have some of that back. Could we move near a school that both of my boys could attend? Maybe my boys could go to school together. My sons who were supposed to be best friends, born 19 months apart, maybe I could walk them to school together. Stop. I cannot make this decision, I do not control that. Nothing I can do can make this situation a reality. I could move into the house next door to the school I like and it could very well not have a class for B. Or it could have a class and the special ed department may deem it not available to B. I have no control. Every solution or every idea the husband and I came up with about how to bring some joy and some peace back went down exactly like that.

Despair: The moment when you realize you have no control over your life. When you realize that you can make the right choices but it is meaningless. When you realize your actions do not impact your future.

Hearing no.

I'm pretty sure one of the most depressing parts about parenting a child with significant disabilities is hearing the word "no" with unbelievable frequency. No, he cannot do that. No, he is not welcome here. No, your insurance doesn't cover that. There are NO available slots. That service is NOT available. I know this is a program for children with disabilities but yours has too much need. We do not have funds. Or there is the yes that is really a no: Yes, your child can be in this program and that will cost you $$$$$ which you cannot and never will be able to afford. Before B. I don't think I ever heard the word no. Pretty much I set goals, worked hard, then I achieved my goal. Autism doesn't roll like that.

I've heard the word no too much lately. Which brings complete frustration. I wish I didn't let people have so much power over my feelings like that. It's one thing to be frustrated with my child's pace and difficulties, where I can blame the disability. But when I advocate for him and fail to get him what he needs, that's all on me, that's MY failure.

Finding what has been lost.

Our house was robbed.

B. and I loaded up the car with all of the necessary items: 3 stuffed webkinz tree frogs, a pair of 4T red shorts, a little tikes gas pump, his ipad, a water bottle. I wonder if someone watched us get in that car with all of those items and figured we would be gone awhile. On the way home from this weekly trip to OT, the air conditioning on my van completely shut down. Most of the way home I was sweating and grumbling about how much this would cost and how we do not have the money to get it fixed so maybe the cost is a moot point. I dropped B at the house with his home therapist, they went inside while I went to go pick up the carpools. When we returned I went upstairs to check in on Ben and found my jewelry strewn about the hall (which would not be terribly unusual given that Ben gets into my stuff regularly). In this case, my bathroom had been ransacked and all of my jewelry was gone, my laptop was stolen. I called the police and paged the husband. When the police arrived we also noticed that they stole E's jewelry box as well (hope the robber has fun with all the BFF half-heart necklaces, silly bands and the friendship bracelets made from string), and that T's bank had been dumped on his bed and 2 $20 bills were missing. Stealing from an 8 year old's piggy bank is disgusting to me.

Since then I keep thinking of jewelry items that I will miss but are probably replaceable. My diamond engagement ring and wedding ring were in the mix of jewelry that was stolen and that was probably the one thing with the most monetary and sentimental value. My kids were upset. T was immediately crushed that someone would steal his money and even my promises to go to the ATM that minute and replace the money didn't really soothe his hurt feelings. I get that. E was concerned and scared, not immediately, but I caught her awake in bed that night and she asked, "what if the robber is still in the house?" which is of course irrational but that's how fear rolls.

I posted on facebook about how we were robbed and I might have put a digital frowny face :( Many friends posted supportive comments and offers of help and positive thoughts and prayers. Also many posted validating comments about how scared we must be and creeped out that someone had been in our house, and how crushed I must be to have lost my rings.

Honestly, I'm not crushed. I'm not really even sad. And even I am surprised at how blase I feel about the whole thing. I didn't post this on facebook because I'm certain everyone thinks I make everything about autism. Everything in my life *is* about autism. Five years ago, I would have been devastated to lose those rings; I would have been so upset that someone had come into my home (in my bathroom, no less) and stole my things! And stole cash from my 8 year old's bank! The nerve!

I've been trying to figure this out- why do I just not care anymore? Is it because I've been through so much trauma in the past few years that I'm just numb now? My previous interactions with the police (and for those who are counting, that would be 4 times in the course of 18 months) were about my 4-5 year old nonverbal autistic son running out of his house and I had to call the police to find him. Waiting for up to 45 minutes thinking of all the trouble he may have encountered during that time (drowning, falls from heights, drowning, being kidnapped, drowning, being hit by a car...) does have a way of numbing the senses to other less serious events, which is pretty much everything that is not life/death.

Is it because after all these years of being forced to live simply, I've just become less materialistic over time? Probably not (though that would certainly be the explanation that I'd like to claim!)

I think the most likely explanation is this: When you, or worse- your child, does not have health, no*thing* matters anymore. Over five years ago, the most important thing in my life was stolen and that was the health of my toddler boy (I almost put "growing boy" in there but actually he wasn't growing and that was part of the problem.) And since then I have made continuous attempts to find what has been lost. Regaining his health has become a full-time, unpaid job- one which I frankly had no choice but to take. Of course, he's doing better and it has been more than worth it. But he's not *all* better so his health still evades me. And unlike my rings or laptop, it's not as simple as trolling the pawn shops in downtown Durham. And the insurance doesn't cover this kind of loss, though it should. And giving up is not an option. So I keep plugging away. I keep researching on the internet and reading message boards to find new treatments. I will put those doctor visits on the credit cards and hope. I keep shuttling to and participating in therapies. I keep advocating for his needs- both educational and health care related. I will keep looking....

The Others.

This is a post about The Others. The Others is a tongue-in-cheek expression that my friend Cathy borrowed from the TV show Lost to describe the siblings of children with autism. Read her moving blog post here.
I have two "others" and they are both older than their autistic brother. These two have seen more in their young lives than many. They have seen miracles and they have seen deep ugliness, and many shades in between. Though I have shielded them from much, still they see and hear. And how could they not? The number of hours they have spent in the car, at therapy appointments, at doctor appointments, with people invading our house (oh, the number of people who visit our house!!) is innumerable. Trust me when I tell you: this was not how I had envisioned raising children would be.
My own life growing up was chaotic. I always said to myself that you have two chances to have a family: the first one is given to you, the one you are born into; the second you create from your choices. How I wish that were true! It is somewhat true. I had such a strong desire to have a happy family as an adult. I wanted to have 4 or 5 kids and I wanted for them to have a happy, carefree childhood. I knew nothing was perfect and I knew I couldn't be a perfect mom. But I was determined to have that family. I wanted it for me, I wanted it for my children. It didn't happen like that.
I cannot speak for my children but I can tell you some things that they have said:
"Now that B is 3 years old, he will probably start talking" :(
"B. hates me and I hate him, that's just how it is."
From hiding under the table at Chick-fil-a "I am so embarrassed, everyone is staring"
"Can I be the one who gives him that cookie, then maybe he will like me and stop hurting me"
"AWWWHHHH waaahhhaaa, he pulled my hair out!" *tears*
Those are all from my 8 year old, who is 18 months older than B. It's hard to believe that they are so close in age. I just had a little communication with the social worker at his elementary school the other day. I asked her if there were scholarship spots in an after school art class (and I explained that we were on a limited income and plus we spend any extra money on T's brother's therapies and medicines). She said that T. was not really on her radar. The Others should always be on the radar for school social workers. They should be on all of our radars. I was angry about it and I'll admit some of it was unresolved issues with me. Namely that this is the school that serves kids in our area, the school my daughter attended for 6 years and now T is in his 4th year there. Do they even remember that my autistic son should also be going there? Have they forgotten or was he so far off their radar that they just simply never gave it a thought?
Then there is my daughter. She will be 11 next week, going on 50. She is a wise old soul. She is patient and compliant. I wish I could have a quarter of her patience. She knows so much about autism, but is never indignant and pissed like me. She goes with the flow, she will forgive you over and over. B loves her like nobody else. And the feeling is mutual. I do think she would be this compassionate even if she never had autism in her brother because she truly came to me this way. But there is no denying that having a brother with autism has touched her and changed her mostly in positive ways.
I have two Others and I'm still learning how to deal with them, especially since they are both so different. I have to always remind myself that these Others are constantly there. They watch me and take cues from me about how to treat their brother. I feel in the future that it will be The Others around the world that make some changes for autism. They are the ones that have seen the painful side of autism, not just the Temple Grandin movie or the savant who can play piano by ear. They know the suffering and can work for a cure and treatment.

Victimology.

Lately, I've discovered the show Criminal Minds which is on reruns on a satellite station. I think I must be close to having seen all of the episodes now. In any case, often on the show they talk about "victimology" which obviously means the study of victims, usually of crimes. On Criminal Minds, they study the victims, usually of serial violent offenders, to pinpoint patterns or specific characteristics of the victims that might link them. This could be anything from hair color to race to location and so on.
I've been thinking a lot about how special needs children are so much more vulnerable to becoming victims than the rest of us without special needs. We have certainly heard in the news about children being bullied in schools. These victims are not often popular, intelligent, athletic, and smooth students. The victims a lot of the times are children with special needs, not always autism but often possessing social deficits and/or behavioral challenges.
Special needs children are more frequently abused as well. Let's face it: they can be challenging to deal with and that challenge can lead to frustration and push people to their tipping point. (Please understand that I do not mean this to be ANY kind of excuse for inexcusable, not to mention illegal, actions. Nor do I mean to "blame the victim.") I'm devastated to hear stories in the news about murder/suicide when a parent kills their child and then commits suicide. I cannot really even fathom the kind of despair that drives that act.
Special needs children are more frequently the victims of other crimes, violent or not. Because their developmental level may be younger than same-age peers they can often be gullible, overly-trusting, and generally show poor judgment.
Lastly, children with autism are more likely to be victims of accidents, sometimes leading to death. It seems like in the summer we hear a story or two PER WEEK of a child with autism wandering away to their own death- drowning being the most common end. Until you've experienced a child who is a "runner" firsthand, it really is impossible to understand how difficult it is to keep these children safe. I've also heard of autistic children falling to their death, jumping out of a window, getting hit by cars, dying in a fire, being left in a hot car.
It's heartbreaking to hear these stories. But I feel it's important to tell these stories so that people know how fragile our children are. How vulnerable they are to predators, bullies, accidents. Vulnerable even to themselves and their own lack of judgment.

Endings...

A very very long school year ends this week.

The girl child is graduating from elementary school and after much deliberation and many pro/con lists (and many objections from said child) she will be attending middle school at our church's school, starting in the fall. More about that some other time....

The middle is doing well, growing in his own ways, made lots of good friends this year.

And then there is B. Summer really can't come fast enough for him. He probably just had the most stressful school year yet. Some of it could be because he's just more aware now that he's older, because some of those preschool years certainly would have had me running for the hills. This year I learned that he can have a pretty good school team but still have a miserable year. How, you might ask? Trying spending a 8 hour days (including 2 excessively long bus rides) with 5 boys with severe autism, all the while having autism yourself. Yeah, so that's why.

Right in the new semester, B was pinching and pulling hair many many times per day. Mind you, this is a kid who was never aggressive before starting kindergarten. He could certainly throw a tantrum that would bring everyone to their knees and the OCD and the eloping and... he had a lot of behavioral issues. But never was he aggressive. But by January, I could no longer trust him within 3 feet of another child, including my own.

I guess the school took all the right steps. They observed, took data, wrote a behavior plan. The sad reality is: That behavior worked for him. We can do lots of things to reduce it whether it be positive reinforcement or some punishments. But it will never be totally gone; it will always be in his bag and he could pull it out at any time. That makes me feel sad. Actually, it's not really sad that I feel, it's more like supremely pissed off, but let's just go with "sad" because it makes me sound less crazy.

I've been gone (i.e. getting my ass handed to me)

Oy vey. Where to start.... I just re-read my last post, which was almost 3 months ago. A lot can change in 3 months. <---understated

We had some inevitable and expected changes. For one thing, B's usual medicaid worker left us after 9 great months. No one is ever perfect, but she was damned near close. The holidays. Or as I now call them: days I used to love and I still try to make awesome only to be disappointed. Christmas is my favorite holiday; notwithstanding, the break and having the kids home was AWFUL. Like jump out a window bad. I could see all through November and December, it was building. B's anxiety, then the OCD, then the little bit more OCD. Next thing I know I see my sweet 10 year old daughter asking her autistic brother's permission to make a bagel FOR HERSELF. That was the proverbial straw. We were all tiptoeing around the 6 year old. The doors, the lights, the endless rituals, the tv hum, repeating the words "red circle button" over and over- I have no idea what that even means. This, alternating with ear-piercing screaming, basically is what my house was like for 2 weeks.

Did I try to go out? Yes. (Stop shaking your head, I had to try!) I thought maybe it would help. Maybe we just had bad cabin fever. The husband was home, we decided to try the mall: it was free, we could make a quick exit, it was indoor. The good news is that we are all still alive. The bad news is that there might have been some blood, definitely there were tears and sweat. B had several tantrums but saved the best one for the crowded food court. Who do we run into but our landlord, the one I've been trying to hide my crazy destructive hazardous child from. Ugh. Well the cat's out of that bag. Good thing we signed a two year lease.

I really could go on and on about break, but really the worst part was when we got a new medicaid worker, who by all accounts has loads of experience in the field, and after two days she quit saying she just could not handle his behavior, the screaming, the tantrums, etc.... On the one hand, I wanted to beg her to take me with her to the place where quitting is an option- by that point I was ready to quit. (I might have googled leaving an older child at a fire station, not because I was going to do this but I was curious whether or not it was an option.) On the other hand, I was highly annoyed. I mean, we are talking about a 6 year old who is maybe 45lbs dripping wet- get a grip! He has autism, stop taking it all personally. Easier said than done. Now we have virtually no help. So that's not good. <---- also understated.