the summer of boredom

Welcome to summer in our household. I’ve taken upon myself to create ‘the summer of boredom’. It’s a long story how I got here, but I’m intent upon seeing this through. I believe in the principle whole-heartedly. I’m tired of being a slave to everyone else’s schedules only to have them unhappy and irritated at the end of the day. Is it all worth it? I often ask myself, ‘what am I doing?’. Every summer until now has involved a tremendously complicated schedule of who has to be where and when. The process begins in January…what camps? …will my child make baseball All Stars?…if not, we need a back up plan…if they do, how long will they play for?…who else is in the camps you are signing up for?…will my child even be friends with them when the camp rolls around?…can I afford this?!!

There is this unbelievable pressure that you feel if your kid isn’t trying to excel at EVERYTHING at EVERY GIVEN TIME. Gone are the days that you just give you kids time to ‘be’. Make some mistakes, find their creativity, learn their own strengths, be silly, and find out what their balance of their own expectations of themselves is with that of their family’s. I know…there is the flip side of this where if you give your kids too much room that they’ll dive into the world of drugs and become hoodlums. Quite honestly though, I wonder if another group of kids might be more susceptible to this…the group that are pushed so intensely by their parents in sports and academics to achieve, achieve, achieve . They want to revolt against the constant pressure. The looks on their faces of sheer agony when they miss that goal, miss that basket, lost that game.

I feel like I’ve been given a chance to just step back, enjoy, and let my kids just ‘be’ for the summer. They all have some things to do. We got a puppy last week that we’ve been planning for. We’re learning together how to care for him. We are going to learn how to fish. We are spending time with family. J is going to an Outward Bounds trip in Maine for 2 weeks. That will eat up most of our family’s entertainment budget…but it is worth every single penny. I’m so excited for him to learn. Learn about himself. Learn what his mind tells him to do, what song his heart sings, and how his spirituality speaks to him. What a wonderful opportunity for a 14 year old boy. He’s had a year that would make most veer off course, but he has held strong. Very strong. Unbelievably strong. I want him to be proud to be himself and to create his own internal barometer for his life. I want that for all of my kids. Hence, the summer of boredom endures…learning how to be bored is something that kids these days in our world aren’t often given the space to just ‘be’. The voids are seemingly filled with passive activities like tv, video games, etc.

Growing up, we certainly knew how to be bored. We built forts, we roller skated, we made up words that made no sense for no reason and laughed hysterically. It is great to have a sense of others’ expectations and a sense of humility. But, is over programmed and being told what to do at all hours the answer? Say what you might, but what seems to be missing in the kids these days is their own voice. They are so busy ‘being’ for someone else, for something else, that they hesitate to express themselves in that.

It kills me that my kids stand there waiting for the next direction from me. I hear things like, ‘I want to play with your iPhone’, ‘I want to watch a kids show!’ ‘What are we doing next?’ ‘When are we going to …’ Dare I declare that those days are over in our house?!! Well, I’m certainly going to make a concerted effort to make a change.

We recently attended the Ironman celebration in Coeur d’Alene to cheer my sister on. (btw, what an awesome event…so proud of my sis!!!) The kids were all sitting on the hillside complaining that they were ‘bored’. My mom told them to ‘find something to do’. About 10 minutes later they were all down on the street handing out water, powerade, ice, and cheers to the passing athletes. The older kids helping the younger kids. They didn’t have to be told to do it. They did it because they wanted to. They had a really, really great time doing it, too!  If they had been asked or told to do this they would have dragged their feet and revolted to no end, causing pure misery to everyone in their paths, including themselves.

I’m not a crunchy, make your own clothes, shoot your own meat, kinda gal. In case you were wondering and don’t know me. I do know that the lessons that I’ve learned the most from in life were the ones in which I had to learn on my own. The ones in which I was inspired by others and was guided by their confidence in me, given space to grow, yet not told what to do. And very importantly, I knew I was loved no matter what.

‘Mama said there’ll be days like this…’

Yep, ‘there’ll be days like this Mama said’…but, she never told me that I’d have 3 such lively boys. Of whom I could have never possibly have imagined such love for. Or never imagined the devastation of the diagnoses of autism of one. Or, have to endure a tragic episode of almost losing another in a traumatic brain injury. Yet, she never told me that with such sorrow, came such incredible joy. I can only barely write about this now, 2+ months later. And, only because we have a positive outcome. Yes, Julian will be okay. He will be different. We all will. How could we not.

Redefining normal seems to be a constant theme in our lives. I could go into great detail how specifically our lives have changed with circumstance. Ebbs and flows. Hills and valleys. Highs and lows. Loves and losses. Disappointments and victories. It’s all life. It’s brutal, but it is beautiful. It is pure.

Yes, my own mother never told me that life as a parent could be this hard. How I would be holding onto my sacred rosary for dear life on the floor of Harborview Medical Center trying to make deals with God. Praying for Him to take me instead of my son. No mother could prepare their child for this. This was a journey that I had to go through on my own. What my mother did tell me is that there is always something good in every situation, in every person, to find. This, I know to be true. Again, I can only believe this because my 3 sons are here with us today. Under our roof. Breathing the same air. Laughing at the same jokes. Eating the same meals. Yes, I can believe that although life will take different turns, and you have to redefine what life may look like, that there is a silver lining and that always seeing the cup as not just half full, but 3/4 full is a blessing. I know that there are many parents whose lives took a different turn, in that very same ER. I wouldn’t know what to say to them. I just know that God had a different path for my son. For me. I’m so grateful. I know that I was given these particular challenges because I can handle it. On days like today, I truly wonder what God sees in me that possibly makes me worthy of such a worldly responsibility. At times I feel empowered by the gift of the responsibility. Today, I would say, that I feel daunted and overtaken by it. Tomorrow, I know that I will feel strength from the lessons that I learned today. Today, though, I feel sorrow. That sorrow will turn into something positive. I’m not sure what yet. But, I know that the song says, ‘Mama said, Hey! Don’t you worry now.’ I will find peace in those words.

apple, oh how I love thee

It’s interesting the press that the iPad and autism has gotten recently. See the article. O loves it. E loves it. J loves it. Our exchange student, Hiroki, loves it. We went to the Hood Canal this past weekend. Car rides have not been our strong suit lately and quite honestly, have prevented us from really doing that much in the way of family outings or vacations. Peter stayed up late the night before heading out and updated our old iPhones with all of the kids apps and a few kids movies. Brilliant! I held out as long as possible, but soon enough the whining got ahold of me, I handed each of them an iPhone. Blissful quiet! Angry Birds, Fruit Ninja, Animals…they love some of these apps!

Wow. How times have changed. How being a parent of a 3rd child (11 1/2 years after the first) really freaks me out about how much I have lowered my standards, or rather, rearranged them. But, I wonder perhaps how unrealistic my initial expectations were. I was younger then. Just 26 years old. So entirely naive. Became a single mom at 28 years old. Life was so different then. My oldest son was so different. I could not have raised either of the little guys in the same situation. Their personalities would not have tolerated it. That was not their place in life. Goes to show how much we have to just trust and have faith that it will just all happen as it’s supposed to. Although I never thought that at the time, I now understand that completely and I love that. Never in a million years would I have allowed my oldest son to play with a video game, a handheld device, anything of that nature. Now my 5 year old and 2 year old play with iPads, iPods, iPhones, iEverything. They watch movies and shows of which I would never have let my oldest watch at their ages. Their world is different. Their places in the family are different. Their point of views and their perspectives will be different from each other. They will each bring something so entirely different to their futures because of their birth order, because of their place in our family, and because of their genuinely unique differences.

It’s fun being one of 3 siblings. All girls. We are all as different as night and day. We all 3 have different yet valued relationships with each other and with our parents. Neither any better than the other, just really different. I love how that we are now all 30-40ish and that we have grown more so into who we are, accepted it, and have embraced what we are, and recognized what we have to offer, our short comings, and mostly our own sense of self-awareness. With self-awareness comes great strength. I think that I walked around more than half of my life completely and totally unself-aware. Glad to meet myself. May have taken 40 years, but I’m catching up! Man, I sure do hope my kids become self-aware much earlier in their lives than I did.

0h, Wednesday, how I love thee

Time to exhale. Peter takes all of the kids to their schools on Wednesday morning. I walk back into the house after frantically waving ‘good-bye’ to everyone and it is quiet. Soooooooooooo quiet. It takes me a few minutes for that to sink in. I walk into the house, sit down, stare at a blank wall for a few minutes, then, ready, set, go! Oh, how I love to multi-task! I put the smut tv on hulu (housewives of new jersey, or of anywhere, bachelorette, bachelor…) and I watch basically anything that requires zero focus or concentration from my brain because I’m busy doing other, making websites, laundry, updating my blog, writing stuff, researching, trying to schedule stuff. I love it!!! Basically, I have an ‘external hard drive’ aka, my binder, in which I write everything down from Thursday until the next Wednesday. Then Wednesday I tackle the to do list. I am a total list whore. I make lists all the time. I’m beginning to realize that I’m the only list person in my home and everyone else gives me the big eye roll everytime I bring up a ‘list’. Especially the teenager, as I’m sure that you can imagine that scenerio. I will not give in. I am a slave to the list!

Costco, Target, Safeway…these are the three big hits on Wednesdays.

At 5pm on Wednesdays, I’m missing my boys! I go to their Children’s Center and pick them up. They are happy to see me, and I am happy to see them. Love it!!!

the thief of joy is comparison

Oh, how I ponder this quote. Often.  When it is just us in our house, with no external influences or judgments, joy is imminent. Sure, there are the difficulties that ensue upon us that we muddle through and eventually find even more joy. It’s when we compare ourselves to others that we start to question the joy that we are feeling. Why do we let that happen?

Yesterday was Oliver’s graduation from his Pre-K class. It seems like we were just sitting in that same room watching Julian graduate. That was 8 years ago!  To preface the situation leading into graduation, our week has consisted of total craziness. Emil has been sick with a fever and has been screaming. (Yes, literally 3 full days of brain numbing screaming and parental worry will zap the life right out of you!)  It was also the first week of our incoming 8th grader’s summer break where the tone of the summer is set. Buttons pushed, check; voices escalated, check; utter teenage madness, check; questioning what I’m even doing as a parent, check check. We had Oliver’s Pre-K graduation from his other school program on Tuesday and it was great. He wore his purple graduation cap with his peers and was seemingly blissful about the whole situation. It was outside on a sunny day with just a few classmates and parents and teachers.

I don’t know why, but Oliver has been amazing lately. Great about talking through disappointments and changes. I’m so proud of him and thoroughly happy with his progress. I really thought that we had struck some magic cosmic balance in our world. He is doing fabulously well on his gluten-free diet, too. Before he tries anything new he asks, ‘Is this gluten-free? Because gluten-4 makes my tummy hurt’. And, if something does have gluten in it and he can’t have it he has been fine with that. He’s done far better than I would have ever imagined.

So, we went to Oliver’s graduation last night expecting that he’d just be fine. That turned out not to be the case. He had a complete meltdown and would not participate in the least. We had the perfect combination to get in him through it with Daddy and his favorite teacher guiding him but it was just not going to happen. We spent most of the time in the classroom while the graduation was going on in the other room. Finally, he managed to go and watch with some serious patience and gentle guidance of his dearest teacher, Akiko, and also Daddy.

I was/am so disappointed in myself for being so overconfident. Thinking that he is ‘better’ lately. Not anticipating that he needed to be there a couple of hours early and coaxed through the entire process. What was I thinking?! I clearly just plain wasn’t thinking straight. But, what I let myself do was self-destruct. I rarely cry in public but I couldn’t seem to turn the faucet off.  It started when I saw all of the graduates in their caps and gowns with their smiles in tact getting a group photo taken together underneath the brilliant banner that read, ‘CLASS OF 2010’.  They had all been creating together for the past few weeks in preparations for the event. All of the moms and dads were proudly taking photos of their kids. Oliver was in the bathroom crying and refusing to put on his cap and gown or even participate. Ugg…another group photo without Oliver in it. Already he isn’t in any of the class photos because he wouldn’t join in. So, here it is, MY expectation that he would participate. Leave a record that he participated and was a part of the group. Next there was his empty chair in the front row that read, ‘Oliver’. More tears. Then there was the look of other parents that said ‘what’s wrong with your kid?’ (not many of them know about Oliver’s autism) I felt the waves of future sadness and grief coming at me full force. Why did I have to go there in my head?! Sure there is a certain amount of grieving that takes place in this process of acceptance, but if I had removed the comparison to others from the equation, as well as the ridiculous expectation that I had set up, this might have been a fine occasion.

After removing myself from the situation to have a mini sob fest, I returned to sit with my husband, my kids, and my parents. The teachers handed out long stemmed red roses that had been lovingly wrapped in lavender tissue and a ribbon. The kids gave them to their moms and said, ‘thank you’. The look on Oliver’s face when he handed me his rose was that of pure love and pride. It is a memory that no group photo could capture and will be forever ingrained in my heart. It was at that second that I felt like a total idiot. Why did I have to let the doubt, the comparison, the expectations in?! He is perfect just being Oliver. I have to revisit my goal in parenting…to help and guide my children to be the very best THEM that they can be. Yep, I think that it boils down to just this. Seek the joy and embrace it!

why walk when you can run, or skip, or gallop

Watching my kids the other day I realized a funny thing…Oliver skips. Emil gallops, and Julian drags his feet (he can’t help it, he’s a teenager), but when he was their age he would always run. I think that it’s a funny way to look at them each individually. I didn’t teach any one of them to do what they do, they just do it. One of the biggest surprises in being a parent is realizing that your kids are just who they are. They might look like their parents, have mannerisms like their parents but they are inherently just themselves. Not only is it surprising, but it is also sometimes the hardest concept to realize and come to terms with. I learn a huge amount from other parents. I’m blessed to have a brilliant, well-versed parent population to claim as friends and mentors. The more seasoned parents have a MUCH better perspective on this than I do.

I think a lot about being hungry. What that means to grow up being hungry. To be so hungry for something that you’ll do anything to attain it. You’d try so hard that you can’t even see straight. We didn’t grow up hungry for food, but we grew up learning that hard work had it’s place to get where you wanted to go. I don’t see alot of kids who are growing up hungry.  Of course not. We worked hard to go to college, and to provide for our children. That was our goal growing up, to live the American dream. Now that we are blessed and living that, I sometimes feel like I’m doing more damage than good; providing too much. Do you withhold things from your kids to instill hunger so that they have desire? I struggle tremendously with this. Being raising half Japanese, in a time when there weren’t so many of us, gave me adversity. Going to a school where the general population was extremely wealthy when we were not, gave me adversity. Education, traveling, and living in foreign countries and learning foreign languages provided me with perspective to learn how important adversity is. I want my kids to be happy and healthy. I don’t want them to starve, but I do want them to have passion. Deep passion for something. Passion so deep that they will do anything in their power to attain it.

So, if our kids are each themselves, where do we, as parents fit in as they mature? I guess that as they grow up that they’ll still need direction and guidance, as I still seek that in my own parents. I want to give my teenager space to be himself and learn from his mistakes, but don’t want him to get hurt.

What is the right mix?! I guess that I’ll have a lot of opportunity for trial and error. Especially more so now that summer is nearly here! One thing for certain, having our sweet Oliver in our family gives us all perspective and makes it real. Some days more real than other days 😉

wondering how much my right arm would fetch on eBay

In putting tax info together, I came across some startlingly realistic numbers. I’m trying to figure out what autism is going to cost financially. What therapies have the highest rate of success? Which therapies are bogus? Which ones are right for O? So many questions and so few answers. He definitely needs ABA therapy. A lot of it. He currently goes 2x/week. I’m finding in research that it recommended that 40 hours/week is necessary to achieve any real results.  Hmm…40 hrs/week at $85/hour. That is $13,600/month. $163,200/year. I could probably find a teachers assistant that wouldn’t have such an hourly rate. Next, we’re finding that a lot of O’s tantrums are most likely caused by his sensory processing disorders. He will need that therapy at least 1/week. That is approximately $140/hour. $560/month. $6720/year. Then there is the gluten free/casein free diet which is not inexpensive. There are the supplements, the regular doctor visits. For other families out there that are encountering this, I wonder how they are coping. How you prioritize what is necessary vs. what is not. I guess that it entirely depends upon each child’s individual needs.

I’m not complaining here. I know that we’re going to find the very best solution possible for O and for our family. I am beginning to think that there are many different kinds and causes of autism. And therefore different coping strategies, different therapies, different cures. Some are better detected earlier, some not. Some manifest themselves in very complex, different ways. Is there a cure? I don’t know. I want to believe that I’m trying my hardest to do everything possible to give O the best space for him to grow in. Seeing him when he is having a tantrum is so painful. I can only imagine the pain that he is in when he is feeling all of the sensory overloads. I am truly afraid to say that I believe that there is a cure because I don’t want to put pressure on him, on me, on our family, for him to be cured of autism. I will love every ounce of him either way.

On a different parenting note…the parent of a 13 year old boy…it seems like girls are entering the picture. These sweet 7th grade girls who were at the 7th grade boys basketball game last night. So entirely adorable in their school color outfits from head to toe. Their cheers for the team. Their contagious enthusiasm. After the big win, they went over to congratulate the boys by hugging them.  Ooooohhhh. Never seen anything as awkward in my life as these boys when these spunky, precious girls came up and hugged them! I was half chuckling at their reactions to the girls, half embarrassed for the boys because it is so far out of their realm, and honestly, thinking a little bit of, ‘hey…hands off my son!’ Never felt that before. That’s just the beginning, isn’t it?!

parent support

Went to my first autism parent support group tonite. It was really great. Very well organized. Very well lead. I met some really great people. There is something very similar about each of us that were there. We are all dealing with something that is so difficult and so volatile. I realized how similar our paths our and how socially isolating all of this autism can be. Being able to share all of these feelings with people who are walking on this same path with me made me feel less lonely. As similar as our kids have the similar look of autism, we all have the same look of being open to dealing with the unexpected and embracing what is here, now. A look that hangs onto hope, but contains a great amount of sadness. I felt blessed to have those people in that room with me to share their stories and lives with me. I needed to feel that after the past week. It was like a big emotional hug.

I feel right now like I am wearing trifocals. Part of my eyes are trying to focus on the bigger picture, trying to manage everyone. Being case manager to the autism. Part of my eyes are focusing on the here and now…the pieces of food being hurled at me across the room, the fists jabbing at me, the middle school homework needing to be managed, the toddler’s shrieks of joy of learning new words. Also, the focusing on the unmanageable…the inability to control this and being overwhelmed by the day to day. My brain has gone into freeze mode. I have become numb to the hitting of me, but cannot tolerate O hitting E. That just doesn’t seem fair. The tantrums don’t seem to be ending. The seem to be escalating. Don’t know when is coming and when one is going.

There was a great quote on the wall at the Ally meeting tonight: ‘Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”.’  I am pretty sure that resonated with everyone in the room, and most people on this journey called parenting. Different paths, same journey.

fall down 7 times, get up 8

I’ve remained so positive and have weathered this storm pretty well. So I thought until yesterday. Yesterday was too much. For whatever reason, O is all of a sudden very difficult to be around. Every single thing becomes a large issue with him. We had such a nice run there of happy behavior and now this. My sweet as honey 4 1/2 year old has turned into an angry, violent, enraged tyrant. I remember now why J and I used to jokingly call him ‘Saddam Hussein Jr’. I can’t wait for this storm to pass. The OCD has overtaken him. Every single thing he has to have control of. His sandwich has to cut into the right shape. Then the sandwich that he demanded he suddenly doesn’t want. He pushes it away and starts screaming. He fixates on eating sugar filled fruit snacks. I tell him that he may have one after he eats some of his sandwich. He flips out. Tell me he hates me. Tells me he hates eating.

The day continued like this yesterday. Until this week he hadn’t had any real fits where he lost control of himself at his schools. Now he is starting to show them what he is made of. Good in that he feels that comfortable with them and they are more accurately to see what we are seeing and help us draw conclusions. Not good in that this has just gotten that much more difficult. We have great communication with his teachers at both of his schools and they have been wonderful in telling us what is working and what isn’t. Hopefully us talking will help fill in the gaps and we can better understand how to help him.

I see this in two parts…One is the ‘what is causing this behavior’. The other is ‘what to do about it when he gets like this’. Ugg. I think that we’re going to have to set up the ‘safe room’. I was hoping and praying that was just a phase and that he had outgrown that terribly destructive behavior. Unfortunately it is back with a vengeance and he is smarter and stronger. (have to make the reference to The Terminator here) By the end of the day yesterday, the I’m-doing-my-best-to-be-patient-with-you attitude was dwindling. When O threw his dinner plate at me was when I was officially done. I just started to cry. I told him that he made me very sad and has hurt my feelings. Of course, this seemed to add fuel to the fire and he hit E. He hit him a lot and I had to pry him off of him. He still wouldn’t stop hitting him. I slapped his hand. He was then enraged. I grabbed E and took him into the other room. O then went over and started to hit J. It was scary because there didn’t seem to be any stopping him (again…The Terminator). Eventually, he managed to calm down. Maybe because I ignored him. Who knows.

I’m trying to monitor my reactions to him to better decipher what reactions work and which ones don’t. I haven’t found one that works yet. Any ideas? I consider myself a resourceful person, but I have found my parenting box completely empty. Unfortunately when I get to that place with O, the other two boys get even less of me than they deserve.

Just watching him when he was so enraged was bewildering. I just don’t know how to guide him. I know that God gave me these 3 blessed souls to love, nurture, and guide through the world, but lately I am wondering if I am doing any of them justice. At one moment last night I had all 3 of them either crying, screaming, or yelling at me. Yep, that would be my low of the day. My high of the day was watching The Bachelor on my computer after the day was done. What a crazy show. Nice to get lost in that goofy world for 2 whole hours. Where the biggest problem seems to be who got the one on one date with Jake!

where are we at?

This past week was the Seattle Public School RISERS meeting. I hadn’t ever attended such a meeting and I think that when you least expect it, the impact of how much our lives have and will change catches me off guard. Risers are kids that currently have an IEP/special ed and are moving into Kindergarten from Pre-K, or from some other programs to first or second. I gather that a lot of the kids were autism spectrum kids based upon the questions asked by the parents. I thought that I was just going to fact find. I didn’t expect to be affected by the process. The entire system of the Seattle School District is changing and they are mapping out how the IEP kids are going to change with it. Honestly, it’s a stretch to be participating in such vastly different educational worlds. The largest problems at my teenager’s small, private school are currently the lack of middle school recess, the dissolution of the 7th grade volleyball team, and too much homework. The parent group at that school is so amazingly openly committed and caring. When there is an issue, there is a feeling of us working together to solve a problem. Now the world we are entering with Oliver’s education is one where it’s a more ‘us vs. them’ mentality with the school district. With this new system of placement and inclusion, it is hard for us to fathom that they are going to reasonably provide for each of our special ed. student’s needs. I understand some of the parent’s frustration with the lack of answers, but to be honest, they are rewriting an entire system. Lets give it a chance to work. I haven’t ever been in a situation before like that. Some of the parents inability to deal with their own child’s situation was clear as they were directing their anger towards the school district. I know it’s hard not knowing where are kids going to school next year. I hear serious anger and resentment in some of their voices. Alot of those parents have had to fight tooth and nail to get their kids what they need and deserve educationally, and I understand how difficult that must be. I have taken a backseat to all of my kids school situations recently. I used to be involved in the PTA, and am on a board for my younger son’s pre-school, but just trying to manage the varied school experiences and the needs of each of them is enough right now. Too much on some days. I feel incredibly fortunate to have friends and acquaintances at all of my children’s schools who are able to be more involved right now. A lot of them keep me in the loop on the goings ons and I appreciate it a great deal because it takes energy to manage all of that.

One thing that I did learn at the RISERS meeting is that there are only 20 spots for IEP students at the EEU for Kindergarten. It will be entirely lottery based to decide which IEP students will be offered a spot. I am not entirely certain of what our options are if he doesn’t get in. I know that he is not at all ready to enter a regular Kindergarten where there is 1 teacher to approximately 25-30 students. That would be devastating. I am grateful to my dear friend, J, who also attended the meeting and put things into perspective and accentuating the positive in this situation. O is a bright kid and will be fine! Thoughtful, you…thankful me. It seems to be so easy to lose perspective in this world that is too cloudy to navigate at times.

I also attended an Autism 200 seminar last night at Seattle Children’s. It was about being a consumer of autism research. The presenter was great and had great passion and compassion for autism and autistic families. He spoke a lot about being skeptical about data and studies. Something I already am. But, it was interesting to hear a scientific perspective. It seems like no one except for doctors/scientists/parents who are on either the extreme right or extreme left of an issue are willing to branch out and take a stand on what it is we are dealing with in terms of the causes of autism, what makes it better, or if there is a cure. THAT is frustrating for me. To listen to this very enthusiastic scientist speak for 1 hr 45 minutes but at the end of that time not to walk away with something tangible to make my son better is frustrating. Even at the Tessera conference that we attended in the fall, I was so frustrated to hear all of these fantastic, reknowned doctors not be able to tell me what to do is frustrating. I want to know what to do. I want to know why my son can’t sit on his bottom, but has to stand on his head and wedge it into the sofa when watching tv. I want to know what possessed my son to break out of his individual play where he was entirely happy, then to suddenly become enraged and smack a kid who was taunting him. He couldn’t stop hitting this kid. Granted, the kid hit him first and was hitting him back. Then O was so upset that this was happening that he couldn’t stop hitting me. WHY is this happening? I don’t expect anyone to understand who isn’t walking this same path with me, but it is lonely to be the only parent who is dealing with this in an entire gym full of parents and kids. Maybe they are dealing with something just as difficult, or even more, but at that very moment, all I feel is saddness for O that he cannot control himself. He looked at me with fear, anger, and love in his eyes at the same moment. I didn’t get mad at him. I held him close to me, even after he hit me repeatedly, and spoke calmly to him. I’m searching for answers. There doesn’t seem to be any obvious ones. Each one is just another piece to the parenting puzzle.

small comforts

Getting O ready for school yesterday, I found his beloved ‘dee dees’. It’s what he calls his blankie. It started out as a crib sized fleece blanket but once he attached himself to it, I realized that we had better get a new one as back up. They discontinued it. I bought one similar, but it wasn’t worn in the same way and certainly didn’t smell remotely similar. I kept the new one on top of the washer and just kept on washing and drying it to wear it in. It never caught on so I cut the original ‘Dee dees’ in half, then eventually half again, and again. I think that the last remaining piece is about 1/8th the size of the original. He had all but forgotten about ‘Dee dees’ and had somewhat replaced it with ‘Puff’, a cute little well loved stuffed dog. But, when I showed him that I found ‘Dee dees’, the look of pure love danced in his eyes. That joy continued for the entire day. Apparently he told everyone that he encountered about the resurfacing of ‘Dee dees’. People who he didn’t even know got an earful of this little boy rambling on about something that they didn’t quite understand, but the outpouring of enthusiasm was palpable. You didn’t need to hear the words. Needless to say, ‘Dee dees’ hasn’t left his side since it’s reappearance into our world. Now O carries Puff and Dee dees everywhere with him. He is comforted by them and if there is anything that will provide him comfort, I welcome it with open arms as well.

different reactions

Here is the article that I’ll be referring to:

8 year old boy taken to juvenile detention for tantrum

My mom sent me this article. The article itself is not as eventful as the comments. I am saddened to think that there are so many people think that you could judge this situation from this article. They are willing to send this mom to jail and throw away the key for bad parenting. There is no indication of why this boy was so upset.

Before our autism diagnosis, I probably would have said, ‘the parents might need to set more clear boundaries’. I for sure would have been more judgmental. After what we have endured in the past couple of years with O, my heart bleeds for this mom and child. You just don’t know what kind of trigger set off this reaction. So easy to dismiss this as a case of bad parenting. Kid just needs a spanking. So many comments like this in the article. Yes, perhaps it was a case of this. But, for a child to behave on such a level tells me that there is something else going on. We, as spectators, as their community, need not stand there and criticize as much as we need to try and understand. Not just tolerate, but learn how to be tolerable of and have empathy for. There seem to be several definitions of tolerance.

1. capacity to endure pain or hardship  2. sympathy for beliefs or practices differing from or conflicting with one’s own  3. the act of allowing something  4. the allowable deviation from a standard  5. the capacity of the body to endure a substance or a physiological insult especially with repeated use or exposure 6. relative capacity of an organism to grow or thrive when subjected to an unfavorable environmental factor

It’s interesting after reading the definition of tolerance, re-reading the article, and then re-reading the comments. It makes me think that we are not all on the same page here and more than that, some people aren’t even trying to be any definition of tolerant or compassionate. They are being downright, intentionally intolerant. They have ZERO tolerance.

Thinking back on our trip to the ER in the spring…we (my husband and I) could NOT get O to calm down. We now know that what we were dealing with was an autistic tantrum. At the time it was a screaming, crying, yelling, kicking, getting out of his car seat, trying to get out of the car, 3 year old who was having a 7 hour tantrum. It was scary. We were both so upset. Peter came home from work. Nothing worked so we took him to the ER because we figured there must be something that is medically compromising him to act like this. There was nothing. There were more of these tantrums to follow and I know that we will have more in the future. I only hope and pray that the type of individual that could be so quick to judge is not in my path when I’m trying to calm my son down. I might have to explain what tolerance really means to them.

I’m still working on my own definition of what tolerance is. Being a mom of multi-racial children and being raised bi-racial in a time when there weren’t that many of us gives me a different history and a different perspective on the matter. Being a mom of an autistic child even furthers my capacity of tolerance and trying to understand what tolerance means in a world where tolerance and intolerance seem not to be too different when you’re combatting something you’ve never thought that you’d combat, and are also looking for tolerance and some compassion in those around you. I know that many, many people endure many, many hardships. We ALL need to be more tolerant and less quick to judge, and more willing to ask, ‘are you okay?’ or ‘how can I help?’.

I go back to what my dad told me a lot growing up, ‘Don’t judge a person until you’ve walked a mile in their shoes’. Wise words.

WWMPD (what would Mary Poppins do)

I hadn’t thought of it, but one of the boys’ caregivers at school, Devona, went thru the Gene Juarez Academy for hair. She came over Saturday and braved the storm with us to cut O’s hair. We tried everything to get O to calm down but it just was what it was…but it is now done. Since Devona knows O and is really easy going, it wasn’t as bad as having a total stranger at a kids hair salon undergo the experience with us. Since it was in our own home, we didn’t have to endure others getting upset. So, in that respect, it was better. In researching this a bit and trying to learn from others experiences, one woman said that she has to give her son a mild sedative to get through it. I wonder if that is where we’ll be headed. If we could get him to take a bath and wash his hair, then I don’t care if his hair is long.

One thing that stuck with me is that he kept on saying that it hurt. She tried the scissors and the clippers both to the same effect. It makes me wonder about pain and autism. I was reading somewhere that one of the factors of not being able to fully identify GI problems in autistic children is that it’s really difficult to discern the severity because pain tends to be different. Some kids sense no pain, and some kids are over sensitive to pain. Thinking back to the whole e.coli incident, I remember thinking that the pain that O is feeling is real. He isn’t imagining it. Would it be expressed in the same nature in another child?  Probably not. I wonder then why getting his haircut is painful.

The rest of the day, Peter and I (and probably Devona for that matter) walked around a bit off balance. Emotionally, the experience left us all drained and wondering what we could do to make it better for him. It just plain sucks to see your kid in any sort of pain, but to have to hold his legs down with your legs and arms and head just to get a haircut just seems so out of whack. It’s kinda the same process for a bath. Hence the reason why we don’t often give baths to O.

O has been extremely violent towards me lately. Okay, me, J, and E. If he doesn’t want to do something he will establish eye contact with you and scream that he hates you. Such difficult words to absorb. I try and repel them and think that it’s not him saying that, it’s just the autism. But, from there either he will change his mind and latch onto something that he wants to partake in, or he kicks, hits, or throws something at me. It makes it difficult, if not impossible for me to interact with him well. I realized that I am very hesitant to be on the floor with him, at his level, trying to interact with him. It takes a certain amount of vulnerability on my part to do so. Looking at the bruises on my body from the last week, I can honestly say that it has set me back from trying to play with him. Being on the defense is not a comforting place to be in in your own home. Maybe the way that I’m reacting to his behavior is making it worse. I am going to focus on that this week. Not trying to change my reaction, but just making note of it. Back to the ABC chart I mentioned last week.

I came across another autism video that I thought that I would share:

It is a really well produced video from Autism Speaks. Alot of the children profiled are far less functional that O. My heart breaks for their families. The reason why I share this is because of the similar journey we embark on. Not any two autistic children are exactly alike. They all have different strengths and weaknesses. Different symptoms. I’m so impressed with these moms determination and hope. It inspires me, doesn’t depress me.

What I noticed about the kids profiled that are similar to O is the screaming, the covering of the ears, spaced out look, in their own world, struggling with everyday activities, and the running.

There was a story of an autistic boy that was killed recently by running out in traffic after escaping from his home. That totally resonated. In the video above they talk about the running, the bolting. When we lived in our previous house, it was a very busy street and I was always completely terrified of him running out in the traffic and getting hit. So many times I threw E in the exersaucer so that I could run after O who found his way out of the house and was running down the street. He has/had no street sense and on a whim could run in front of a car. It is so scary. In our new house we also live on a busy street but O has gotten better with this and the doors are always locked. We’re having a front porch lock made so that if he gets out of the house that there is also the safety net of the front porch being enclosed. It helps a great deal that there is a fence like structure that prevents him from running directly out into the street. The other day we went to The Children’s Museum and he bolted. I lost him twice. I told the workers at the front to please look out for him and do not let him out the exit or the entrance without me. Thank goodness they were so understanding and kind. Emil was wearing a bright yellow vest. I need to get Oliver one, too. They’ll be easier to keep tract of.

So, back to the title of this entry…seriously, Mary Poppins made this all looked so easily. A spoonful of sugar made the medicine go down.  Was that the hardest thing that she seemed to have to contend with? Was that a metaphor for all difficult parenting? I wish that I knew how to sugar coat a haircut for O.