I have this great daily calendar on my desk at work. Each day there is a new word to learn and it contains a definition and the use of the word in a sentence. Some of the words are really strange and you know you will never use them; others are interesting and fun. We joke about them sometimes at work and try to use them in our sentences. When we do use these new words we think we are very clever!
Over the weekend one of the words was extremophile. The definition is : an organism that lives under extreme environmental conditions. My friend told me I am an extremophile. Gee, just my luck, couldn’t have skinny legs, but this I get!! It was sort of funny because I do not really perceive myself as living under extreme conditions. It’s all what you get used to. I seriously do not subscribe to feeling sorry for myself (exept for my 2 pity parties each year). I feel capable, motivated and focused. But, every now and then you realize that there are extreme conditions present here. Yesterday Jason wanted to come home from school early. This was about his 3rd time at the nurse’s office in two weeks. The nurse lets him call us, what’s up with that? Could you imagine when you were a kid the nurse allowing you to call? And, just for the record, she is not a nurse, she’s an aide at school who stays in the “clinic”. I think they have 2 bandaids and an ice pack. Sometimes it’s a parent volunteer. I won’t tell the school that I’m a juris doctor, I might get recruited!! Back to Jason; something is going on there. He is overwhelmed by his class. The teacher is trying to make a man out of him whether he likes it or not. I truly believe he has some sort of ADD, he doesn’t focus well, and is so easily distracted. Last night I tried to do homework with him. He seems lazy, uninterested in doing well, yet if he gets a bad grade he’s mad. I lost it with him and let him have it both barrels. ugh. He wants me to help him but he’s fresh and stubborn. Then, and this is the worst part, he makes a pouty face that is my face and my body language exactly. Fuck this, payback is the nastiest bitch of all. After a while we got it together and finished up. We have a conference with his teacher on Thurs morning. She’s one tough cookie and she took me down last time. To her credit, she knows him well and made some very insightful comments that I needed to hear. This time I’m bringing reinforcements….
Here’s what I came home to last night. Bryan was having a complete meltdown in the afternoon. Don’t ask my what do I think triggered it because if I stood on my head, or asked him a thousand times I would not know. He is also not emotionally mature enough or adept with language to tell us. Truthfully he may not even know himself. I would bet puberty is the catalyst if not the cause. So when I got home Jason had a nice chunk of skin taken out of the side of his face and a deep bloody scratch on the back of his neck. Just another day in paradise. Bryan was punished and he knows his behavior was unacceptable but he just laughs. And not a nervous chuckle either, a full-blown out gigglefest. I would join in too if it wasn’t so disturbing. Non-stop inappropriate laughter=extreme condition in my environment. I guess I am an extremophile!
On Friday I got an Outlook invitation at work from a woman who I would call a “good acquaintance”. We have a mutual friend at work and have had several conversations but we don’t know each other that well. It was a lunch invite and in the body of the email it said “my daughter just got an neuropsych eval and the doctor said she has mild autism”. Wow, drop a bomb like that in an innocent lunch invite, whew! The invitation was for a few weeks away and I’m way too action oriented to just hit “accept” and get on with my day. I called her. I gave her my cell and told her to call me this weekend. I could tell in her voice that this was way too fragile to have even a preliminary discussion at work. I assured her I could help her. When we hung up I had the same sensation as when I hear that they are giving out the Bar results; memory anxiety. It takes you back, it makes you feel panic and fear. I felt so so so bad. In some ways it is easier to get that news today because there is so much more info available, even a first 100 days after diagnosis kit on the Autism Speaks website. However, as we all know from accessing the Internet, a little knowledge is a dangerous thing.
I am a huge Harry Potter fan. I like the movies, but what I really like is all of the clever names J.K. Rowling gives to things. For example, the pensieve. The pensieve, if you are not a fan of this series, is a bowl of swirling smoke that is filled with memories and recollections. Mostly these are of Prof. Dumbledore’s recollections because it’s his pensieve. How smart, she uses the latin derivatives to name things and I just geek out about it. My boss’s wife is an English teacher and she feels the same.(yay). In any event, I wanted to give this friend at work a pensieve of my memories and recollections. Although many of them would be heart wrenching and difficult, I know she would see how hopeful things can be. The little things are huge and cannot truly be described. I wish she could experience these things through my pensieve much like Harry Potter learning about Snape and Voldemert. A picture is truly worth a thousand words. Of course this does not exist, but I hope when we speak I can help her because the diagnosis, just the word autism can overwhelm. I await her call. Weirdly enough I wish I had taken her number instead.
On a happy note, I wanted to report two really nice things that happened this week. On Wed night I took Jason for an orthodontist appt. He has one of those palate expanders and it needed to be checked. I had Bryan with me in the waiting room. He was watching Thomas the Tank Engine (ok he’s a little old for it, but the trains have great facial expressions and he does try to interpret them). He was giggling up a storm. I kept trying to quiet him down and then two other Moms who were talking to each other, they both had kids in the exam rooms, said to me, “the giggling is great, we never hear that anymore” and they giggled a little too. There was nothing patronizing in their comments although they knew Bryan was not a typical boy. Their comments and demeanor were uplifting and I started to watch Thomas with him and enjoy his giggling rather than squash it. Yesterday I took Bryan to get dress shoes for an upcoming Bar Mitzvah. He does not like shoe shopping at all. I take him to payless buy the same damn dress shoes each year for the one or two dressy events and then put them in the closet for Jason. We needed to have his foot measured and a young man worked there and came and helped us. I never offer up that Bryan has autism, first of all it’s not anyone’s business and I guess subliminally I test people to see how they will do. I also try to let Bryan handle exchanges to see how he will do as well. Wow, I need a shrink. Well this kid was so patient, so sweet and just helped us. Bryan was using my iphone to watch Toy Story and the kid was telling Bry how much he likes that movie too. He helped us find our size and just engaged with Bryan as much as he could. I thanked him profusely for his help but it just made me feel so good. Here was a person with just a natural kindness, all good.
Ok, here’s something not nice to say. I say when I go to Disney World that I am a super model, if you have been you know what I’m talking about. And trust me, I’m no super model. This is particularly true at the Water Parks in July. But modeling, whether by Cindy Crawford or anyone else, is particularly important as a parent. I am learning this more and more each day. I read the Modern Love piece in the NY Times Styles Section this past Sunday. I don’t always read this piece, but every now and then my soft side comes out and I read it and tear up. This particular article was so well written about a man who lost his wife and the relationship he has with his sons after his wife is gone. The one thing that really jumped out at me was that his mother-in-law, in the midst of losing her daughter, made a point of telling the author what a great thing he had done by modeling such dedicated husband behavior. Apparently he had let his boys(they were teenagers) know that while their mom was ill that she needed his full attention and that their issues and needs had to take a back seat. I am not making this sound as touching as it was in the article. But modeling the respect and dedication to your spouse models great behavior to your kids. If you are a man and you respect your wife and treat her that way, so will your sons treat women in their lives with respect. Essentially that was the lesson. This lesson got under my skin.
We talked to Bryan’s Autism Coach today about Sea World and about upcoming middle school visits. She told us that all of the staff are talking about how well he did. She said “he was a gentleman (totally crying), appropriate and just a 5th grader.” Come on, it doesn’t get better than that!!! So it made us start to think about what do we want for his immediate future? Earl and I went last week to visit a school just for kids with autism. There are no typical kids there and they do not have any typical kid interaction at all. It is a small school with a good teacher/student ratio. It is far from our house and a little tough to manage logistically. We started to think about who our son is and what is good for him. He is a product of us. Earl and I are both extremely social people. We each have friends for more than 40 years and our connections go to the core of who we are. We model social behavior, we crave social behavior and so does he. Bryan, while really unable to navigate a true friendship, tries to socialize. He always knows everyones names and talks to people wherever we go. He is a super friendly kid. Although his conversations are more associations than anything else, the fact that he tries, that he wants to interact, well, that’s revealing. Would he think we were selling him short if put him only with kids with autism? Would he feel “less typical?” We really wouldn’t know, but if we are thinking it, I bet he would. His perception is sharp even if his verbal confirmation is not present. So on we go to the next bunch of schools to visit. They are local public middle schools where he will get plenty of modeling, and for middle school, that won’t all be good. It’s ok, though, part of the growing and maturing process.
I have been on Cloud 9 since Bryan came back from Sea World. We learned more about the trip and he seemed to have managed well. He even tried to push his aide away during mealtimes so he could eat with his friends. ALL GOOD. Today is a quintessential day in the life of a family with autism. Weekend was nice, Bryan seemed very proud of himself from his trip. He “did a great job” at speech and soccer. He actually slept late on Sunday. I left for work at my regular time this morning. Earl takes the boys and I usually check in with him after to see how things went. He told me Bryan was crying a lot. He cries every Monday morning and truthfully although this does pierce my heart a little, I know he will be fine by 8:15 so I am not really sidetracked by this news.
Our sitter called me at 2:15, she had just gotten the boys off the bus and realized she forgot her house key. Rather than driving 40 mins roundtrip I asked her to come get the key from me at the office. Knowing how much the kids love the vending machines at my office, I got them each a snack and with that ammunition, I headed downstairs to meet the 3 of them. Bryan was a wreck. He was screaming and crying that I should come home by 5 and that he wanted to stay at my office. It was ugly. He was pinching and I was worried. Worried he might hurt Jason or me, and to be totally candid, I was worried some work people might see. I am not embarrassed about the autism, because if you know me, you know Bryan has autism, I just don’t really want to feel those looks, the stares and the pity. The pity and the judgment are the absolute worst. I got him in the car and went back to work. The giant balloon of sea world happiness is having a slow leak. About an hour or so later, Earl instant messaged to me that Jason called him that Bryan was out of control. Two steps forward and one step back, always. Always. Someone posted an article on facebook today about having a child with autism “wrecks your life”. It was an article from the UK and this person was observing friends with their child and all of the issues they face, from failed careers, fear of having another child, aggression, extended family pressure, financial pressure, etc. The writer explored the concept of a test for autism as a precursor for terminating a pregnancy. He was posing this question to the audience. This is heavy. I can’t even conceptualize the idea of not having Bryan if we knew he would have autism. We didn’t even really know what autism was before him, it wasn’t even on our radar of things to be concerned about when having a baby. Colic, that was my fear. Oh man was I naive back then. But if we knew he would have had Downs we might have had to really consider what that would mean. That was what I was “afraid of” as I got my amnio results. Now we know a boy who has Downs in our area and I love that kid; he is loving and sweet. He has a job and is doing pretty well. People have chimed in on that article with all kinds of comments. A few were very honest, saying that they would still want to have their child, but wish things were easier and that they are not grateful for the disorder but still love their kid. Isn’t that what you sign up for as a parent, unconditional love? It’s hard and I guess that’s the thing.
Another GD lyric; the metaphors are beautiful and vivid. Bryan’s trip to Sea World was a huge success on every level. I received a text on Thurs morning that said that the Asst Principal who was on the trip said Bryan is doing great and he wishes he had 100 Bryans. Yay!!!!! Jason and I went to pick him up and what was great about the reunion was that it wasn’t exceptional. He didn’t stand out. He just saw us, came over and gave hugs and kisses. “Hi Mom, I missed you.” He and Jason hugged and then we got in the car. Bryan asked, “Where’s Dad?” Funny he doesn’t say Mommy and Daddy anymore, just Mom and Dad. He exhibited no signs of anxiety or stress, he was just tired as anyone would be from an overnight that surely did not foster a good night’s sleep. He got home and chilled out. Our dear friend arrived from Atlanta, and he was happy to see her. He was relaxed and then of course, so were we! He took my ipad and started watching one of his favorite youtube videos of Spongebob. He was by himself just giggling. Jason and I were on the couch smiling at each other and then Jason said “I missed that sound.” (yes he’s 9 but he’s an old soul)
I can’t figure things out. I thought this trip would be hard for him, I thought there would be anxiety, vomiting and mad perseveration. Instead I got nothing but a relaxed and happy boy. I’m not complaining, just observing. What you expect to be hard turns out to be easy and vice versa. I take the boys for blood work every 3 months and he just sits and does it like it’s nothing. He even sort of looks forward to it because we go to the same lab and often have the same man take his blood. But, if we go to my aunt’s house for dinner he gets emotional and worried about when we are going to leave. If I brace myself for tough news at one of the doctors’ offices or school, it is smooth and upbeat. If I go in without a clue, whack, I get some sort of crazy news right between the eyes.
Today we go back to the regular schedule, speech, OT and soccer. The routine is comforting for everyone:
So Bryan and the fifth grade class will leave for Sea World at noon and they come back tomorrow night; pick up is at 10pm at school. Deep breaths!!! Last night I took the boys to Target, they both have some Hanukkah money left and they are in search of Legos. Jason wants that Harry Potter Hogwarts Express and it is not out right now. I guess it’s the post-Christmas empty shelf thing. We bought two small Lego sets, a Spongebob for Bryan and Batman for Jason. In the store I asked Bryan if he was excited for the Sea World trip. He said “yeah”. This is not a bad thing. He either does not have anxiety about it or he is keeping it in check, either way I’m not complaining. Jason, on the other hand, says to me, “Mommy I am worried about Bryan. What if the same thing happens at Sea World that happened at Talisman?” (If you are new to my blog see entry “Lost in Translation” about Bryan getting lost at Talisman Camp). I pulled him aside and told him not to say this in front of Bryan and we could speak later about it. But, of course, it’s right there. I did my best to get on with the purchases and go home. We ate dinner, I packed up Bryan’s stuff, half excited, half anxious. Interestingly enough Earl let Bryan sleep in our bed with us. For him this was a concession but at the same time I know we both wanted to hold him close. For me, a slice of heaven, I can breathe him in and snuggle.
Jason always goes to sleep after Bryan. Bryan absolutely loves to go to bed and you never have to “put him to bed”. Sometimes he will ask me to come up with him but then he is out in two minutes. Jason started telling me that he is really going to miss Bryan. So cute, but knowing Jason it is that he feels what we feel; great for Bryan to go but a little bit tentative in being too excited. This morning Bryan decided he wanted to take a bath instead of a shower. I was happy about that because that means he will let me wash his hair; it is an incredible sensory experience for both of us to wash that hair. You really have to get in there. He stayed in the bath extra long and I am proud that he will be the cleanest, “sparkliest” kid on the trip.
Jason took a shower as he does every day. When he got out he called for me and said he needed to tell me something. He said “Mom I am so proud of Bryan”. I teared up and he said “Don’t cry Mommy, he will have a fun trip.” I told him like I always do, “I’m not sad, it’s love cry.” I kissed and hugged Bryan a few times before I left, careful not to overdo it or get emotional. I don’t want him to think we have any worries about him or the trip. He really seemed ok. He said “I’ll see you tomorrow at 10 at school.”
A little while ago Earl called to tell me the drop off at school went really well. He said Bryan seemed really excited to go, no tears at all. He gave the aide at school who is going with him all of his stuff and she also is very excited. He said “Daddy, I’ll miss you. Mommy will be pick me up tomorrow at 10” and said goodbye. Growing pains today!!
I am going to take some poetic license here. One of the strange things that parents do, and it’s human nature, is compare their kids to other kids. We know we are not supposed to, but, who always does what they are supposed to do? And, even if you don’t admit to it, it still happens, or you still do it. Of course this is not limited to kids with autism, all parents do it. In some ways it is good, if we didn’t see a bunch of typical kids at parties when Bryan was little and notice that he was not behaving like they were it might not have occurred to us that something was wrong. Our relative space in the universe is important as a benchmark for functioning. I try so hard not compare Bryan to other kids on the spectrum; they are all so different, all have different ways of “showing their autism”. Bryan jumps and flaps and perseverates. Some kids don’t like loud noises or touching. Sometimes I think you get the kind of kid you can handle. I don’t know if I could take it if he wouldn’t let me mush him up and kiss him. I am the type of Mommy that kisses and hugs even if it’s embarrassing or unwanted by the kid. I tell them all the time, “I will never leave you alone, never.” Resistance is futile!!
What’s tough is you see some families that literally do nothing extra for their kid and the kid is moving along fine; other kids where the kid has more therapy and programs than 10 kids combined seems to be making little or extremely slow progress. Our goal is to make sure we do everything we can do, well mostly…Do we achieve that goal all of the time, absolutely not, but we try. Why do we care what other kids are doing? What does it matter how our kid is doing compared to others? I don’t know really but I guess thinking about it keeps you in check to be happy for what you have and where you are and to stay focused.
Bryan has his overnight Sea World trip this week; so proud that we will be the first parents to send a child on the spectrum with the 5th grade class and that he is the first 5th grader on the spectrum to be going. Relatively speaking, we are doing ok!