Yesterday Earl and I went to Bryan’s school for an honor roll ceremony. Bryan got all Bs and B+s for his first marking period of middle school. One A in PE!!! All the parents were seated in the auditorium and the kids filed in with their classes. I could see Bryan looking for us in the crowd and when he spotted us he flashed that warm, delicious smile. Bryan has very smiley eyes!!! He made his way to his seat with his classmates and spent the next few minutes just looking for us and at us. He and I kept looking over at each other and we would catch eyes, smile, and give each other a thumbs up. Earl and I were just….over the moon. They called the names in alphabetical order. At one point they called a boy named Bryan Davis and he stood up (Bryan’s middle name is Davis) and his teacher told him to sit down. He was listening for his name!! You see, this boy has gotten awards before, so he knows how they work!!! When they called Bryan Kaufman he got up and got in line to get his award behind another boy. The Asst. Principal asked him his name and I could see from my seat he said his name. He took his award and stood for photos with the other students. Never missed a beat. Do you have any idea how this made us feel? Do you have any idea how this made him feel? I must spend time acknowledging this great moment. Here is why:
1. He behaved just like any other student.
2. He knows how much we love him and knew we were so proud of him.
3. He did not carry on when we went to say goodbye to him. We stole a few quick kisses and ducked out of the auditorium to go to work. I cannot even tell you how many times we went to events when he was younger and if he saw us the rest of his day was a misery. Now he knows how to act and control himself.
4. He achieved good grades. He may not be on grade level, he may not take FCATS (dopey standardized Florida tests) but he still can achieve.
I picked him up from speech therapy at 6pm. Jason was already home with Earl so we were alone. We went to an Italian Restaurant together and ordered pizza and sodas.
We sat down at this very cozy table for two; he outstretched his arm on the table for me to hold his hand. I did and we held hands for most of the time until the food came. At that moment there was no one else in the world but the two of us. We talked a little here and there but with Bryan it’s better not to push too hard on the conversation. He needs to process questions slowly so he will be more forthright with info if he doesn’t feel pressured to respond. The food came and, in typical fashion, he ate like he was getting shipped out. He talked me into giving him a 3rd slice of pizza which I don’t usually allow. When he was done he said, “I feel better”. I thought was hilarious since he looked so stuffed! The lady next to us was there with her son and her mother and from time to time caught eyes with me. I could tell from her smiles she understood a lot and I felt really proud to be with this ever evolving, ever emerging, young man. We drove home and he was truly happy. He said “I love you Mommy” a few times. Sometimes he says this and it’s just chatter; he doesn’t even know he’s saying it. Sometimes he says it when he is worried or if I’m angry with him and it’s more of a question. This time it had its true meaning. I love having each of the boys alone from time to time. We get to connect and deepen our bond. I remember the times when I was a kid and had alone time with each of my parents; they are great memories to have and hopefully will be that way for the boys too.
Bryan has always been able to communicate his needs. “I”m hungry”, “I go to the bathroom”, etc. But over the last year or so, thanks to Marcia, the greatest speech and language therapist here in So Fla and school, and maturity, Bryan’s vocabulary has expanded dramatically. It’s not just the longer sentences or answering questions, it’s the qualifiers, the adjectives and adverbs that have really made a huge difference. For ex. This morning he woke me up at the standard 4:42 am by coming into our room and saying good morning and giving me a kiss. Then he snuggled into bed with me and said “Mommy make my lunch for school. Mommy make me breakfast.” I said “I will at 5:30.” This is my standard answer, just trying to buy a few precious moments under the covers, knowing additional sleep is not an option. Then he said, “Make my breakfast first.” As I always say, it’s the little things that get you. Lately we have been hearing words like “again” and “my favorite” and “still”. Another great concept he is working on is the difference between asking and telling. He always asks, even when he means to tell. So now I say to him, “are you asking me or telling me?” He not only knows the difference but can express it. This may all seem very trivial to those reading this; but communication is the essence of humanity. In order to relate to people, you must find a way to communicate effectively. Each adjective, each adverb, each appropriately expressed sentence or question is a triumph for him and for us.
On Sunday I was taking the boys to meet my folks for brunch. Bryan loves brunch at my parents’ club. He can have bacon and a bagel!! Bryan would live on bacon if possible. So he took a shower and got dressed. He picks out his own clothes and typically does a fairly good job of matching. However, he put on a shirt that had a bunch of stains on it. Ugh. So I had to tell him to change his shirt. Our 12 year old boy put up quite a fuss, “no I can wear this shirt!”. He gave me a hard time for a few minutes and then changed. Earl and I had a chuckle. How typical of a preteen to want to wear what he wants and to argue with his mom about it. On balance he is a super good kid and changed. Earl and I try to take note and acknowledge these moments of typical behavior. If nothing else, they provide a sense of hope for the future Bryan as well as remind us to stop and enjoy the present Bryan.
Often times over the years Earl or I will be very upset with ourselves about our interaction with Bryan. It is hard to forgive yourself when you have not had patience with your child, let alone your child with a disability. Sometimes we can blow it off, other times if it has been going on for a long time or gets particularly ugly we just can’t shake our own feelings of guilt or shame. One time in particular, from about 2 years ago, always stays with me. Bryan was behaving very badly and Earl and Bryan got into it. After they were done “interacting” Earl came into our bedroom where I was watching tv. It was late afternoon/early evening. He felt so bad and just sat on the bed, wiped out. We always try to support each other through these times since we really can empathize with each other. We do not judge; it would be both unfair and counterproductive. A few minutes into our talk, hugs, etc. Bryan came into our room and climbed into bed with us. No matter how bad it gets, eventually Bryan will be remorseful. Sometimes this is quick but other times it can take hours or what seems like hours for him to reel himself in. Anyway, he climbed into bed with us and put his head down and said “it’s all my fault.” Earl and I looked at each other and then hugged him and kissed him and cried and told him nothing was his fault. I have never ever gotten over that moment. How aware is he of what he has going on? It levels you when these things reveal themselves.
Yesterday the boys got their first marking period report cards. Jason called me at work to tell me he made the Honor Roll. Awesome!! Bryan has speech on Thursday nights so I pick the boys up and our ritual is to go to Wendy’s and drive home. On the way home, Bryan is up front with me and Jason was in the back. Bryan was complaining of a headache and put the seat down to lie back. Bryan is almost never quiet. He really cannot stop repeating things; he is aware of it and tries but at times cannot quiet himself down. So at this point I had no idea that Bryan got his report card too. Duh Jane, same County, should’ve realized but I had not been home yet. On the ride I said to Jason how proud I was of him for making honor roll and running for VP, blah blah blah. Bryan said, “Are you proud of me?? With proper emphasis I might add. Oh my God. I almost went off of the road. This is huge!!! He gets it, he said it, he knows, he feels….Honestly, these are the moments we live for. I couldn’t wait to get home to tell Earl. I know when I tell him he will feel what I feel. I of course reassured Bryan that I was truly proud of him too and his report card was great too. Transition to Middle School went off wtihout a hitch. The slow motion that is raising a child with autism just moved forward.
Bryan lies, yep, he does. And guess what, mostly we’re happy about it. He is not a liar per se; but he now understands the nuance of not telling the truth when you think it might get you in trouble. Sounds like a silly concept, but what is more typical than a pre-teen not wanting to fess up about eating something they were not supposed to, or messing up their room, or playroom? While we always advocate for honesty, listening to Bryan say “no” when we know the answer is “yes” at times can be sort of heartwarming and charming. It is so funny too to see his face when he knows he has gotten caught. He also knows when it’s sort of ok to lie vs. when it’s not. For example, if you ask him whether or not he has had his medicine, he will always tell the truth. But, if you ask him if he had dessert or an extra cookie, he tries for the no but when pressed will give up the yes.
He has other behavior that is interesting or typical, even if by accident. If Jason is in trouble or does something wrong, Bryan will laugh hysterically. We are not talking about a smirk or little chuckle, but a full on belly laugh if Jason is mad or in trouble. Truthfully I think it stems from the fact that he does not know how to navigate us or Jason when this happens. He doesn’t want Jason to be upset or mad but he can’t articulate that, so he laughs. Inevitably one of two things happen; Jason will become infuriated that Bryan is laughing “at him” (which may or may not be the case) or he will start to laugh too and the whole situation will become diffused. The latter is always preferable, but not likely. Last week I was having dinner with the boys while Earl was at softball. I was upset with Jason for trying to use my iPad during dinner. We have a rule of no electronics during dinner, and Jason knows this rule. I got upset with Jason and Bryan started laughing so hard that we both started to laugh too. Then Jason said, “Mom, doesn’t Bryan have the best laugh?” Oy!!! My heart hurt from such a warm and loving comment, but we kept on laughing. Bryan is crying he’s laughing so hard, saying “Mommy is mad at you Jason!” Sort of typical; laughing at your younger brother, yet sort of autism-like with inappropriate laughter. I’ll take the former.
Although we have the new lying to contend with we are also benefitting from this new found awareness on Bryan’s part. On Thursday night I had Bryan alone with me after Speech Therapy. We were driving home and this was the same day that I had been at his school and received his psych assessment. We were close to home and we stopped at a red light. I couldn’t hold it in any longer and started to cry a little. Here was my delicious boy who is so smart and sweet and that dumb report got to me like I was a first timer. My right hand had been resting on the gear shift. Bryan slipped his hand into mine and pulled it close and kissed my hand. “Why are you sad, Mommy?” I said, “I’m not sad, it’s love cry.”
On my game today. We have a meeting at Bryan’s middle school to review the results of his psych reassessment. I try to pass this off in my brain that whatever they say that is negative I will not get upset or blame myself. I am putting on my protective emotional armor. For these events I am not sure how to approach the psychologist. Just so you know when we went to sign the permission forms to have the testing done we met the psychologist who was going to do the testing. She seemed to have a nice demeanor, other than that, what would I know? However, as many things go with public schools, by the time they actually got to the testing phase there was a new psychologist doing the testing. Apparently the first one got promoted and now is at the district level. Hmm. So now I am going into this with no frame of reference at all. I am fascinated by these psychologists who have to give info to the parents. I am always feeling like I am two people at these meetings; one an observer of people, trying to study their body language and words for the delivery of tough results. The other is the mommy in me, feeling the knots turn in my stomach, trying to decide if I want to completely discount what these tests and people say, or do I want to use this as a launch pad for getting more resources for Bryan. As with most things, somewhere in the middle is about right. I also hover between being the nice parent and listening patiently and warmly and the bitch mom who wants to take these people out who make sweeping judgments on my kid. Anyway, this will be a two part blog, this is the before and I’ll let you know the after….
I’m baaaack. Let me just say if you are delicate, close your email, facebook or wordpress page. I am not and this is one of those times where blogging= catharsis. I typically don’t like to say this, but if you don’t have a kid with major issues or special needs, I am just not sure you will fully comprehend this. Can you imagine someone telling you your kid is in the 1% (and not the good Romney 1%) of the population as far as intelligence? Hopefully you cannot imagine it nor can you recall it. The irony of this whole thing is the f-d up IQ test that they gave him is called the Kaufman test. I will have to grill Earl later on insane psychiatrist relatives from years past. In any event, why did we agree to these tests? It is part of the school system’s obligation to reassess, so we figured we would do it. Why do they have some woman, I believe who is a psychologist ( however not the one who administered the test to him) sit down and tell us something so preposterous? It’s almost better that the numbers were so bad because it gives them even less credibility. Then they nicely give you your very own copy of this masterpiece/report. His teacher was there and she is a love, she is explaining how well he is doing in school. I do trust and believe her but the timing just doesn’t work well. Also they love to tell parents of kids with autism how great they are at decoding words. Well, guess what, I’m really great at decoding bullshit too. Oh wow he can identify words, dude, back off, this ain’t my first rodeo. I didn’t cry, perhaps that is progress or lexapro or some combo. What seems moronic to me is that they tell you he doesn’t test well because they can’t repeat the questions and they can’t give accommodations. The point of the tests, at least I think the point, is to measure growth. As far as I’m concerned the only growth took place was me not losing it completely.
Yesterday I spoke to one of my college/law school friends who I “talk” with on facebook all of the time. He is smart and savvy and has a great sense of humor. We talked about the election and the country. I knew talking to him would bring back old memories of college and/or law school. So today I’m going to focus one of the early principles they teach you in law school; substance over form. I plan to focus on the boy, not the bs.
One of the great things about autism, and yes there is more than one, is your appreciation for small things. Actually, it’s the small things that are the big things if that makes any sense. Today I was in my bedroom sorting laundry and putting it away. Bryan was lying on my bed playing a game or watching a video on my iPhone. Bryan is always interested in where he stands with you. He said to me “Mommy are you happy with me?”. I said “yes” but it was a very nonchalant yes since I was busy with my chore and this is a typical question from him. He said, “Mommy, tell me in my face.” I stopped and looked at him and said yes. He wanted me to look him in the eye while I was talking to him, a measure of sincerity and understanding. Not only did I stop what I was doing to do this, but my heard filled up with this feeling of connection and warmth. So small, yet so big.
Both days on the weekend we drive about 30 mins to take him to Speech Therapy. He knows the way and typically enjoys the drive. Bryan has trouble chilling out and often cannot stay quiet at all. Again, he was looking at my phone, I think watching Batman. The night before he had been at his friend’s birthday party but could not relax at all. His anxiety level was fairly high and it was one of those situations that pain him and us. He wants to have a good time, knows he’s driving us and himself nuts but can’t get out of his own way. So, back to the ride to speech today. We were driving along, windows down, sunroof open. You know the kind of day where it’s clear, warm and dry and you just feel good to be alive. He said, “Mommy, I’m feeling happy today. I’m not anxious.” Yep, that’s what he said. So small, yet so big. He knew his emotions, he expressed them in a full sentence, and he was calm. The trifecta of happiness for me!!!
We are getting ready to go to Running Buddies. He is looking forward to it and I’m looking forward to spending more time with my happy boy. Happy Sunday. Go Giants!!!
I have always been a huge Who fan. I used to have such a crush on Roger Daltrey. In 1982 I drove down to Shea Stadium from SUNY Albany with friends to see them. (don’t tell my parents, they think I was at school studying). They rocked it!!! I have seen the movie Tommy no less than twenty times. In my younger years I loved it because of the music and the long-haired Roger Daltrey. When he sings “I’m free” in his jeans and no shirt, well that was jammy jam for me. That movie had something for everyone. Great music, goofy scenes with Jack Nicholson, Keith Moon, Tina Turner. I don’t think there were many teenage boys that could forget Ann Margaret rolling around in that white jumpsuit either. As luck would have it in my older years when I see the movie I choke on my tears. Why do I associate Tommy with Bryan? Bryan can hear and speak and see. But when they sing, “look at him in the mirror dreaming? What is happening in his head? I wish I knew”; I just can’t hold it together. My issue, not Bryan’s. But music haunts me and helps me so what can you do?
When Earl and I were first dating we saw Quadrophenia at the Garden in NYC. Oh how I loved it!! I still love Roger Daltrey’s sound and stage presence and have maintained my crush over the years, even the short-haired version still gets me. Today is our 15th wedding anniversary. Quite a milestone!! We have been and continue to face many challenges together. Our love for great live music and that freedom of a concert still lives within us. How will we celebrate? Opening night of the Who performing Quadrophenia in Sunrise, FL. Can’t think of anything more fitting!!! I saw Pete Townshend on the Daily Show recently promoting his book. I don’t want to read his book, just want to watch him rock it out.