Now you’re talking my cracka lacka language.

When they tell you your child has speech and language delays, you think, ok, we’ll get some speech therapy. Well almost 9 years later we probably could’ve bought a mercedes with all of the money we have spent on speech and language therapy. Not a complaint, just a fact, however I wouldn’t really want a mercedes anyhow. A porsche? I could work with that. The thing is there are always ups and downs with everything. Bryan has truly one of the greatest speech and language therapists now. Her name is Marcia and she is so dedicated to her kids. This woman has super duper credentials (I am a credentials snob admittedly) and she just knows how to get to the kids. She is also incredibly warm and loving and the kids are drawn to her. Bryan ADORES her and so do we. Her give a shit level is so high and I feel such a connection to her and her energy. However, no matter how much we love her and we go 3 times each week, the results are always slow in coming. We know he understands everything we say, but getting him to formulate sentences, ask questions and answer questions is truly the hugest challenge. Recently he has started to speak a lot more. Every full sentence, every question and every credible answer to a question is met with pure joy from us. Last night one of our friends, Chris, came over to watch the Giant game (damn Giants) but both Bryan and I were asleep before he came over. Bryan just a regular night, for me, a very necessary ambien induced coma night. Bryan loves Chris, he is so warm and nice to Bryan. This morning Bryan said “I was sleeping when Chris came over”. Ok, not going to make the grammar hall of fame, but I was so happy. Made my day, spurred me to blog, all good.

Jason is in on it too as well as my sister and Mara, our sitter. When he does or says something new we get sooo happy.  Sometimes you would think we are totally cookoo because we tear up or scream yay for the slightest compound sentence or complete answer. And when he asks a question, you would think they dropped the ball in Times Square! The other day Jason wanted to go on our trampoline after swimming and wanted Bryan to go with him. Jason asked him and Bryan said “First I need to get dressed”. Jason was so thrilled, he said “Mommy, did you hear that good sentence from Bry?” then he turned to Bryan and said “that was a great sentence Buddy”. Priceless. It’s a journey for all of us. On another planet that might be somewhat condescending from a little brother. On our planet, the unconditional love and support of Jason is a bonus better than the powerball.

If you are wondering, “cracka lacka language” comes from Madagascar 2. The Zebra, Marty, is played by Chris Rock ( I loooove Chris Rock). They are in Africa and he discovers other Zebras, which he has not seen before. They ask him to join them running on the plains and he says “now you’re talking my cracka lacka language”. If your children are younger than 10 and you don’t know that, what the heck is wrong with you?

Sister Act

A few years ago a very close friend of my cousin Andy passed away suddenly from a heart attack. He was either 42 or 43 at the time with a wife and two young kids. I went to the funeral and the friend’s brother got up to speak. One thing he said has stuck with me: “you walk your life with your siblings”. He went on to talk about his brother and how you share a unique perspective as siblings. I love my sister. She and I did not get along well growing up; some sort of combination of a 4 year age difference, my parents constantly comparing us and just good old sibling rivalry. Fortunately for us, we have outgrown that. We both just no longer want to be those girls in our parents home. We take our relationship seriously and there is nothing we would not do for each other.

Ok, enough mushy stuff. Here is the deal, the sibling relationship is inexplicable.  Who else really gets the quirkiness of your parents, who else remembers all that crazy nonsense growing up in your house?  My sister has an unbelievable memory. It’s scary at times. She reminds or tells me of things that have happened growing up and I truly cannot believe that she can recall these events in such great detail. Did my parents give her some ginko biloba or super vitamin that I didn’t get? She told me the funniest story recently. I was explaining to her that Jason was super stressed (yes 9 years old) when he got his report card because he didn’t get all A grades and make honor roll. Sadly he gets this horrible, neurotic behavior from me. My sister told me a story that my father was so upset with my anxiety as a kid over my grades he said he would pay me to get an F. I had zero recall of this story. We laughed so hard and never needed to tell each other why. We also sound alike and sometimes I hear her when I speak, it’s almost like you are a part of each other.

My two closest friends have sisters and I think we all really treasure that bond. It’s interesting but all 3 of us are the “babies” in our families and as such are always the good girls. puke puke puke. Perhaps the first borns just need to break in the parents a little bit or the younger one learns to be good to get some attention. Who knows?

 It’s also fun to watch the relationship develop with our boys. Jason can tease Bryan or talk like him at times, but if anyone else does he is super protective. You know, it’s one of those sibling things, I can beat the hell out of my sibling but if you touch them, I’ll kill you.

It isn’t easy being green

I do love  the Muppets. I always picture Kermit riding that bicycle in the first Muppet movie, so clever!  Today my parents and my sister are taking the boys to lunch and then to see the new Muppet Movie. Typically I would love to go see it, but I don’t want to see it more than I want a little break. Besides, like all good kids movies, we will rent it or own  it on DVD within a few months. So I bet you are thinking, what will I do with my few hours, do some holiday shopping, take a nap, relax outside on a gorgeous day, nope!! Going food shopping. Here’s the thing, Earl and I are going together, a date of sorts!! It’s the little things that can be fun. Last time I took the boys to Publix Jason and I shared such a laugh. Bryan was at the freezer looking at the ice cream choices. He said, “I want the hoopers ice cream. I kept saying, what? After a minute or two I realized he wanted the whoppers ice cream. So cute, but literally it’s who-ppers, so how can you say anything? Gave us a laugh and now it’s known as hoopers ice cream in our house.

We have had a great Thanksgiving Break. We started out on Wed night going to the Panthers/Rangers Hockey game. The Rangers lost, ugh, but 2 great things happened, lessening the sting. First, my cousin Ben called me on the way to the game. He and his son Jacob were going too and we met up in between periods. Ben is a mushball and loves family. He was the one who nicknamed  Bryan “the big dog”, Bryan’s initials are BDK and it has stuck. Our team for the Autism Walk each April is called “The Big Dog Walkers”. I digress. And second, Bryan was terrific throughout the whole game. We had our usual chatter from him (3 and then home, which refers to 3 periods and then home) but he watched the game. Seriously watched. And he sat still. And he didn’t scream at all. Who really gives a crap if the Rangers lose? We won!! At one point during the second period Earl and I looked at each other behind the boys backs and Earl whispered, “look, he’s watching the game.” Small victories for us, Rangers did not fare as well.

Thursday, of course, was Thanksgiving. I always tell myself before these events, don’t worry, everything will be ok. If we have to leave, we leave, it’s family. But, Bryan was great. We got to my cousin’s house around 3:45 and it wasn’t until about 6:30 that Bryan got anxious. He swam, he ate appetizers, who isn’t a sucker for a pig in a blanket? He said hello to everyone and was genuinely in a good, relaxed mood. If that isn’t something to be thankful for, what the heck is? During dinner he got upset and we negotiated a time to go home. We told Bryan to say goodbye to everyone and on his own he went and hugged every single person goodbye. This kid with autism loves hugs, and loves affection. I get warm loving kisses all the time and demand them from him every chance I get. He loves if you give him a raspberry on his neck which of course i love to do.  Another stereotype in the toilet. One thing we always do is say what we mean and mean what we say. If we tell him we are leaving at 7, we leave at 7. We feel it is so important that he can trust us. And he says it, “I trust you mom”. Love it.  It is a learning process. The really key thing is not only does he seem to really understand things on a more mature level, but he can express his thoughts better too. Yesterday morning he was punished for destroying Jason’s legos. Jason spent hours working on this one space ship and Bryan knows no boundaries. He just goes into Jason’s room  and touches things. We had to punish Bryan. He cried and said “I’m sorry”. Typical for him. But now he says “Jason I’m sorry for touching your legos”. Or ” Mommy I’m sorry for hurting you.” Talk about looking for the glass half full!!

Ok, next hurdle, new babysitter starting in a week…

I am thankful for autism.

I am reading tons of articles about how to prepare your ASD (autism spectrum disorder) child for the holidays.  Some are incredibly helpful in that they let you know it’s ok to be super stressed about it. The key, really, is preparation, Good thing I ate a lot of girl scout cookies (samoas rule). You have to always know your child’s limits and when to call it a day. You need to provide for your child the things they need to feel comfortable wherever you go. It’s almost like when you take an infant out, you need to have extra clothes, diapers, wipes, etc. For the asd child, you need to have with you things or strategies that will soothe them in a new or short term environment. I always worry about Bryan’s behavior. Sometimes he is good and sometimes he is seriously NOT good. One year at Yom Kippur break-fast he went into my cousin’s pool with his clothes on. It would’ve been funny if everyone didn’t give us the pity stare. NOT good. I am, however, always very hopeful. He loves to be with the family and will hug and kiss everyone. We don’t have a lot of trouble about food, or what to do, he will watch tv or a dvd or play with my iphone if he’s bored. He will just repeat about 50,000 times, “I can go home”. He has anxiety about having to stay overnight somewhere he doesn’t want to, even though he knows in his heart and in his head he is going home after dinner. I have gotten a little sleep, I can hack it.

It’s so cliche to write a blog about what you are thankful for on Thanksgiving. Why would I want to do this? I have to admit, I just love the holiday time of year. I love hearing people say “have a nice holiday” and I love shopping, online mostly, for something cute or surprising for the boys.  I was telling Jason that I was able to find a 4 DVD set of Fat Albert for Bryan on ebay for $8. He wanted to know if I got him anything, too funny.  I told him, “no, i’m only buying gifts for Bry this year”. He laughed,  but then got worried!!

I am definitely thankful for the obvious or high ticket items: a great family, good health, a good job, great friends, etc. Some of the less obvious items I think about are: hearing Bryan ask a question, watching Bryan and Jason hug each other when they haven’t seen each other in just a few hours, watching Earl kiss the boys goodnight, listening to Bryan tell us what ingredients are needed to make a cake, laughing with Jason at The Regular Show. I am thankful for autism. No, I’m not cookoo for cocoa puffs, because mostly it totally sucks, but to be completely honest about it, autism has done some good and has changed me for the better. Do I wish at every chance, birthday candle, etc that Bryan was a typical boy, mostly yes so his life would be easier, but then he wouldn’t be him, would he?  I am thankful for autism because it has forced me to shed a judgmental nature, it has forced me to live in the moment, to be open with people, and has gotten me to smile and laugh at some of the most unlikely times and at some of the most outrageous things. Earl and I have bonded through our autism journey and have learned to share the burden and joys of autism as a team. We have an unspoken ability to pick each other up just when the other one is at the edge of the cliff. While we switch off playing coach/quarterback, defensive and offensive line, we are always on Team Kaufman.

Have a Happy Thanksgiving.

Hey, Hey, Hey, it’s fat Albert

Do you remember that show? 70’s cartoon that was put together by Bill Cosby and had a great theme song. Na, Na, Na, gonna have a good time, hey, hey, hey. Well, Bryan loves that cartoon. Not even sure how he stumbled upon it, some combo of carton network, you tube, etc. When we hear him sing it, we laugh, and we sing along, even Jason. It’s one of the fun things about Bryan, he loves to sing and can carry a tune. He gets you engaged, whether you want to or not.

Just got back from Soccer Buddies. Bryan did so well, he was running and sweaty just like a typical 11 year old boy. Bryan does the time check constantly. It is held from 3:30-4:30 and on the drive over he says, “it’s 4:30?” to which I always say “how can it be 4:30, it’s not even 3:30 yet.”. It’s just one of those Bryan things that you get used to. He typically checks every 10 mins or so while playing, just confirming that it is over a 4:30 and how much time is left. While I was watching him and talking to some of my friends, a woman came over and introduced herself to me. Her son, Jared, is Bryan’s running buddy. Running Buddies is from 9:30-10:30 Sunday mornings. Jared is a doll, always has a smile, and laughs at all of Bryan’s “isms”. Bryan tells you how much time is left, that he farted, what he’s doing the next day, etc. a whole bunch of times. Jared’s mom told me he loves Bryan and never complains about getting up early. (In case you are wondering, the kids that volunteer for the buddies programs get community service hours.) She told me he loves all of Bryan’s “isms” and comes home and talks about how funny he is and how smart he is, etc. I was so touched. I mean every parent wants to hear nice things about their kid, but the fact that this typical high school boy is enjoying Bryan and all of his quirks is just terrific. Bryan has a way of charming people, he just has a warm smile and a loving way that I think is unexpected of kids with autism. Jared didn’t even care that Bryan pinched him. I let this nice Mom know that she has a great kid there, he just sees Bryan and takes over, he never waits for the Running Buddies to start, he just takes Bryan to the playground and laughs.

I am going to really enjoy this moment. Beautiful sunny day, Thanksgiving approaching, ahhhh.

A Chuckle and a Tear

Introspection….

I never really read blogs before I started blogging. From time to time an interesting autism one might catch my eye but truthfully I just wasn’t hooked into the whole blogosphere. Now I read a few blogs on a regular basis and I love to read people’s perspectives and observations, particularly on day-to-day life or autism parenting.

When people have asked me, what is the point or focus of your blog I am usually at a loss for words (shocking, I know). There is a purpose; to let me get out some of the stuff I have bottled up. No, it’s to memorialize some of the feelings I have so I can track progress of the family and me. No, it’s to let people who care about me see the realities of a family with autism. No, it’s to keep a diary of my life for my kids. Ok it’s about all of this stuff but really what’s best about it are the comments, subscribers etc. Who knew anyone really cared about this stuff? I have gotten some really supportive and wonderful emails, messages, etc from people near and far.

I am always so pleasantly surprised when I receive comments from someone who I do not regularly talk to or who may not know me well or at all. Sometimes I feel like they must think I’m nuts but I guess that’s the thing, if you open the door, stuff comes out and you can’t or don’t want to control it. The people connection is the thing that I guess I am after, after all. The support from other people, whether they can relate or not to my ramblings, propels me.

I have a terrific friend/colleague/confidante at work that helped get me set up with the blog. I had never even heard of wordpress before. She gave me a gentle nudge and is incredibly warm, true and loyal. She said when she reads the entries she always has a chuckle and a tear. WOW. That is powerful because I think that sums up who I am and what I’m doing. My life is a chuckle and a tear because laughter and crying are really my coping mechanisms

Woo hoo I got the Indian

I have a serious passion, yes, passion, for milk duds and tootsie rolls. I made the mistake of telling my work group about this. So, after witnessing the meltdown on Monday ,one of the guys in my group, who is really terrific and supportive, brought in a bag of Tootsie Pops. At 8:30 I busted open that bag and had an orange tootsie pop. (no this was not my breakfast, just a mid morning treat). My wrapper had the Indian with the bow and arrow. That is supposed to be good luck if I remember my elementary school fictitious luck stuff correctly. Perhaps my luck is changing. I have a lotto and powerball ticket I bought on Monday, but today, with the help of my Indian, I may need to go get some new ones. Happy Day!!

What’s really ironic is that I’m not religious but I see and feel all of these signs or divine interventions. Here’s an interesting story for you. Each year lots of Israeli folks come to Florida to spend the holidays. About 3 years ago friends of ours came down from NY to spend Passover. They stayed at a beautiful hotel in Miami, on the beach, and there were many Israeli folks visiting too. The hotel caters to those observing Passover and it is a nice combination of vacation and celebration. We went down for the day to visit our friends and spend the day at the pool and beach. Our friends rented one of the poolside cabanas and they have two boys and we all ate lunch together and had fun. Mid afternoon our friend, Lloyd, and his older son, and my family headed down to the beach to fly a kite. Bryan was not interested at all in the kite. Instead he wanted to go into the ocean and swim. Lloyd is a great swimmer and he went in the water with Bryan. Lloyd has been very involved with Bryan since he was born and is very accepting. In the water next to them was an Israeli family playing with a volleyball in the water. There were two men and a few teenagers. Bryan swam over to one of the men and he started throwing the ball gently back and forth to Bryan. Bryan also was clinging to him and swimming with him. They seemed drawn to each other and truly enjoying each other’s company in an easy, natural way. This man looked at me and said “it’s ok” because he could tell I didn’t want Bryan to be imposing upon him. They played for a while, at least 20 mins. Bryan had his arm around this very tan man with a big gold Jewish star. After a while the man got out of the water and told Lloyd and me that he had to get changed for his flight back to Israel. Then he hugged me and looked me in the eye and said “Your son is the same as mine”. And just like that we shared a moment of autism/parental understanding. And guess what, he left and I sobbed. I felt as if an angel had touched my life. Between this and the camp/airport encounter this summer I wonder if Bryan has someone looking over him. Since I eat so many tootsie rolls, perhaps it is the Indian with the bow and arrow. Good rationalization to have another tootsie pop.