Break on through to the other side

Not a huge Doors fan, but respect the impact they made at the time. Jim Morrison, however, was pretty hot.

This blog could have many other titles:

Somewhere over the Rainbow

I can see for miles and miles

Light at the end of the tunnel

Never underestimate the power of love

I love it when a plan comes together. Ok I’ll stop. Besides I might want to use one of those some day.

Bryan has had a kick ass week at middle school. Monday, went with no issues, lather, rinse, repeat all week. Confidence and maturity, the perfect mix. Bryan came home from camp a more mature, calmer boy. He seems way more aware, and more verbal. I have noticed that even when he has not done a great job of expressing his thoughts, he has been trying a lot more.

Typical children naturally progress in a lot of ways, particularly if you let them. Bryan is learning to do a lot of typical things. I noticed he no longer wants me to pick out his clothes. I tell him it’s time to get in the shower. He goes and picks out his clothes, puts them in the bathroom and gets ready. Shower, shampoo, deodorant (yep 12 yrs old), brushes his teeth, combs his hair (some days the hair needs work). He makes his bed and goes downstairs. He knows he is not supposed to take any food without asking and has been great about listening. He self corrects. If you don’t know what that is because you only have typical kids, let me explain. Self correcting, quite literally is when he knows he is doing or saying something wrong, against the rules or what is not typical and talks himself out of it or soothes himself in some way. He knows he repeats too much, so he says “I know” or “I know in my head”.  AWARENESS, that is the door opener. Once you know something about yourself you can work on it. AHHHH love it. My boy is thinking. I know it sounds trite and we all know he is thinking. But thinking about how the world perceives you or your impression on the world, what a huge thing that is for our kids.

Bryan goes to before care at school. Earl takes him and walks him into the Media Center. Yesterday when Earl walked him in he said “goodbye Daddy, go to work”. He didn’t want Earl to walk him in. He might have even been embarrassed by having his dad walk him in. YAY. A 12 year old boy embarrassed by his parents. Can anything truly be more typical than that? Please note, we don’t want Bryan to be anything but Bryan. The goal is not to morph him into a typical boy. The goal is for him to have an easier path to independence.

We are getting a new puppy on Sunday. SOOOOOOOOO excited!!! Earl put together the new crate last night and we have been hearing Bryan say, “I can see the new puppy, he comes on Sunday”. He does not usually seem excited by things like this. But he is feeling all of our energy and he does love puppies. If we got a puppy years ago he would probably have been excited too but the fact that he can articulate his excitement and show his emotions, well that’s the bonus.

Anxiety Attacks, film at 11.

If you have kids you know that the week before school starts is not fun. Or it should be fun, but it isn’t. I am a planner, I like to do as many things as possible to make my life and my family’s life easier. Best laid plans… as they say. On Wed evening I stopped at Bryan’s new school to pay for Before Care. If you don’t know what this is, it’s for f-d up situations where school starts too late in the morning and both parents work. Nice that because we are working and middle school doesn’t start until 9:30 (when most people are already at work) we have to pay $80 a month for someone to watch Bryan from 8-9:15. Ok, so I go and pay this and meet his teacher. Very nice woman, we had met before and she tells me I can come in early on Friday if I like for orientation. It was planned for 9:30 but she said I could arrive any time after 8. I am working this week so that is good for me. Wednesday night we went to my cousin Avi’s wedding celebration. He is getting married in Israel and his mom made him a party at her home for those of us who won’t make it to Israel for the ceremony.  I love to see my extended family and was looking forward to this event. Bryan loves the family and kept saying all day “I’m going to a party” and knew who would be there and expressed excitement in seeing them. Well just another case of  “just when you thought it was safe…” happened. He could not relax for 30 seconds. I don’t know why his anxiety level was so high. So many people there that love him and he loves and he still couldn’t reel himself in. So of course I had a lovely time not catching up with family and not talking to my cousins going back to Israel. Oh well, just another day in the life. All of this, nonsense, nothing, for amateurs.

On Thursday our  sweet and wonderful niece was watching the boys. I picked them up and had a sitter coming to watch them in the afternoon. I was going to leave Bryan with the sitter and take Jason to school for orientation. Sitter was 30 mins late (just so you know, I am not good with 5 mins late so you can imagine where I was at 30 mins late, yep on the ceiling), which caused us to be late for school orientation, no place to park, Florida afternoon monsoon happening. Get to school, Jason is not in the class he expected to be in. OK, hold the phone, um, no one can let me know of this prior to arriving. love it here!!

Ok he goes with the flow, stays at school with one of his friends and his friend’s mom who is a teacher and friend. She will drop him off. Go home to check on Bryan and sitter and go back to work. At work one hour, sitter texts me she locked herself and Bryan out by the pool.  oh joy! Back in the car, now I’m starting to unravel, too much driving back and forth, rushing, stressing, feeling like a bad mom, Jason is not in the class we thought, babysitter issues, can’t turn off brain and anxiety. Major car accident had happened (not me) on the road I go every night, delayed about 15 mins and get home. She and Bryan are out front. I send her home, take a Xanax and I completely fall apart. I seriously passed out into a deep/sleep/coma, blah blah. Danger Will Robinson!!!

Friday morning, fresh start. I am all good in the morning. A little sleep(and I mean little literally since Bryan woke me up before 5) and some high octane coffee and I’m ready for middle school orientation. We go early as we were told this is ok. I get there, the teacher who told me I can go early is now no longer his teacher. They made a change and didn’t tell me. New school, are you f-g testing me??? Do you want Bryan puke all over you on Monday? Don’t pull this crap on me, I am so far over the edge right now I can’t be trusted. Jason said,  “Mommy, you don’t need to say those bad words”. And me, mother of the year said “um, yes I do, Jason, yes I do.” He is right but really? Had a little talk with the Administrator and went home. Called Earl and he said “oh boy” because he knows, do not play with me people, you will not win.

He took the boys back for orientation at 9:30 and I went to work. The fast pace of work distracted me and I got myself back on track. Just another day in Schmolland(if you don’t know the Autism thing Holland Schmolland, send me a comment, it’s priceless but not mine, but I can send it).

All hope is not lost however. I try to take note of maturity and development in Bryan. When your child has autism the little changes and triumphs slip in and you must take notice. I took Bryan to Walmart yesterday. I know, nutty thing to do on the day before school starts, but I needed to get some keys made for our new sitter.  Bryan wants to see toys and DVDs. He wanted a DVD and at first I acquiesced. Then I thought to myself, he should not get a $15 DVD just for going to Walmart. I told him he had to put it back. He said, “ok Mommy” and put it back. WHOAA! Do you have any idea what just happened? I told him no and he didn’t pinch, yell, cry or carry on.  One small step for man, one giant step for mankind.

All weekend I was waiting for the other anxiety shoe to drop. As you know I am a veteran and so I am trained to wait in the foxhole for the ambush. Yep, it came for us, around 6 pm last night. Jason had a panic attack of sorts.  We asked if he was nervous about school, duh, but he said no and seemed confident in his answer. I took him for a brief ride to get gas in my car and cash for today. Got him some Hershey drops, chocolate is the best medicine, had some hugs and distraction and went home. Bryan went to bed fine, his anxiety always manifests in the morning. Packed extra clothes in anticipation of puke. Perhaps he will make it without, but a veteran always has back up.

Putting Jason to bed last night and just talking a little the truth came out. “Mommy, was I kicked out of the gifted class?”. Yep, I knew it would surface. Jason has been in the “gifted” class since first grade and this year he was not put in there. I think he did not do as well as other kids last year; some combination of the teacher’s teaching style, his intimidation and just a lack of effort. I said no way, because he had not been kicked out there were just kids placed ahead of him. I told him you just need to work hard and try and be the best Jason you can be. Barf. Do they really have to inherit my anxiety gene? I have nice eyes and steadfast determination, that couldn’t trickle down?

Left this morning for work, Earl drives the kids to school. Better for everyone  involved.Early news on the drop off was all good. But I always say, the first day is nothing. They go, they don’t know. The second day……

Jambalaya

So for the last week or so I have said to myself, I really need to blog about this or that, and haven’t. I am all over the map with free-floating parenting and autism things so I think this post will be more of a disorganized mess than a thematic essay.

On my mind:

1. Boys are home. So nice to have the family back together. What did Bryan learn at camp? What did he get out of it?  Don’t look for the big ahas! You don’t get them. The information comes out slowly. He lost weight, he grew, he seems fairly calm and more self-assured. He is proud of himself, “I did a great job at Camp LeeMar”. On Sunday he said, “Mom, I’m so happy to be home.” So typical, what more does a person need to hear?

2. I am going to change my behavior, you can only change your own behavior anyway. How people respond to your changes, well that remains to be seen.  I made a promise to myself that I will spend more time “being” with the boys. For Jason that is easy, play a game on the iPad, watch him swim, go on the trampoline. For Bryan it can be more challenging. He still likes to watch Sesame Street (he loves the music) and also he likes the same movies over and over again. But just 15 mins focusing on what he wants to do and I know there will be some gains. Actions speak louder than words and I am going to focus.  I realize that just a few minutes here or there, not watching Real Housewives or playing Family Feud will be greatly treasured by the family.

3. People amaze me. That statement is meant in both a positive and negative way. Last week an acquaintance and I were talking and I said I was going up north to pick up my son from sleepaway camp. Long story short, I told him my son was on the autism spectrum. This person looked at me with such a sad face and body language and said, “wow I”m so sorry”. Um, what? Damn get with the program, no one is sick or died. geez. I have never had that reaction before. I certainly understand people may not be equipped with an “appropriate” response, whatever that is, I still don’t have an appropriate response to that news, but I have never been faced with the sorrow of this person. After taking this like a sucker punch I had to scramble back to my feet to put my afternoon back together. Luckily I am not a novice and I was able to walk it off. The flip side is that people amaze me. Here’s the scene: Bryan’s bus was supposed to arrive in NYC at 11:30 on Friday morning. I knew they would be early, so I got to the designated spot, McDonald’s at 34th and 10th street, at 11. I ordered coffee and was settling into my seat watching for the bus. I called my Mom to catch up. I noticed another woman who looked like she was waiting for her kid too.  I didn’t even open my coffee when I saw a woman with a camp shirt on and she told me the bus had arrived. I ditched my coffee and scooped up Bryan from the bus. The counselors were telling me how much they love him and how cute and fun he is. Amen. I know my boy. The second he got off the bus, actually I think he was still on the bus, he said “I can go to the airport and go home to Coral Springs.” No NY sight seeing for this boy. I knew it would be like this and we jumped into a cab for LGA. However, the weather was not cooperating and our flight was delayed. It became  a long long day. I made up my mind no matter what he did or said or no matter how many times he repeated something I would not lose my cool, would not be upset, and I would be sweeter and more loving to him. I think this really helped relax him. At one point we were standing near the gate waiting for our flight to be called. Bryan was jumping a little and a man caught my eye. He gave me that look that can only mean one thing. I have a kid on the spectrum too, I feel you. It is always a nice feeling to know you have a compatriot. He came over and introduced himself and shook Bryan’s hand.  He knew not to try too hard to engage him, but did ask some of the basics. We got on the plane and sat in the very last row. A young woman sat by the window, then Bryan and then I sat on the aisle. He repeats so much that if you are not used to it I am sure you are thinking, “can’t you shut that kid up?”. But you can’t so we have our little tricks and things. I reassured him and hugged him and kissed him and watched Ben 10 on my iPad with him. I have seen this movie a hundred times, but who cares. I even snoozed for 5 mins which is big if you know Bryan. At the end of the flight this young woman said to me “It is so nice to see someone who actually parents their child and does it so well.”  WOW. I didn’t see that coming. I am not writing this to brag, if you know me I am my own biggest critic, but really to illuminate the “kindness of strangers”.  I thought she would be doing Jagermeister shots in FLL after almost 3 hours. People amaze me. Such a nice comment for just treating my boy with love and respect. Yay.

I am all over the place this week; the proverbial rollercoaster.  I am going to buckle my seat belt and enjoy the ride.

Imagine all the people…

A few nights ago we watched a movie entitled “Loving Lampposts, Living Autistic”. I did not want to like this movie. For one thing I do not say autistic, it bugs me and it’s offensive. Secondly, in one of the teasers for the movie it showed Jenny McCarthy. I was totally a fan of hers when she was a playboy centerfold/comedienne. Not a fan as a mom. I am not convinced her child had/has autism  and her focus on rescuing our kids or focusing on recovery is bullshit. Only good thing I can say is she did raise some awareness. Surprisingly enough, I did really like the movie. One of the things I can never get enough of is hearing from adults with autism. I am a big Donna Williams fan (40 something australian woman who did not speak until she was 9 and now has written tons of books and lectures all over the world). These people can help parents understand a lot of what is happening with our kids and unlock some of the mystery. It reminds you that no matter what is going on on the outside, the inside is filled up with brains, thoughts, emotions. People always ask us, do you think Bryan knows blah blah blah. He knows!!!!

While most of the movies, books ,etc.,  on autism do not really give us any new “information” they give perspective. I try to take a tidbit from everything I read and see. What I loved about this movie was really three things:

1. Acceptance doesn’t mean you’ve “given up”. I agree with this so much I cannot truly express it  in words. I think this feeling for me came over time. It wasn’t so much about acceptance of autism but rather acceptance of Bryan. He is who he is and he’s a wonderful boy. He does not have to learn in a classroom with 20 other kids to be smart or to learn math. He learns how he learns and at the end of the day, if he gets the knowledge  that’s what counts. We don’t have to chase down every suggestion, every new treatment to be trying to help him. It’s a learning process.

2. Learn to relate to your child in the way that works best for them, not you. This is a big lesson. If your kid likes to play video games, play video games with him. Don’t expect him to always want to read a book or engage in conversation that is so tough for him. It’s ok to sit together and not talk and just “be” together. It is important to help navigate the world in which he is forced to live, but we do need to always try and live in his world too.

3. What the heck does high functioning or low functioning mean, and on whose scale? This is a personal pet peeve of mine. I love when people ask, is he high functioning? Hmm, let me see what the heck that is. Can he tie his shoes, yes, can he shower, get dressed, make his bed, take a bowl of cereal, yes. Can he carry on a conversation for 15 mins, no. Ok so what the hell. And just so you know, I have hardly ever heard a parent say, my kid is low functioning. Why do this and make yourself feel like crap. Every kid, autism or not, does some things well and others, not so much. Can you imagine someone saying about your typical kid, hey is he smart or dumb?  Labels suck!

What I loved so much about the movie was listening to these adults with autism, some speaking, some using a speech assistance device and some just typing, saying that they all wanted to help people understand autism. One man who has autism teaches kids with autism how to play piano. This is amazing. Hopefully when a lot of our kids get older they will be able to teach kids with autism many different things in a way that will truly be effective. Sooo thought-provoking. I can only imagine how great it would be to have a teacher with autism teaching kids with autism. It will happen one day soon and it will be revolutionary.

Bryan comes home this week. I must remind myself to spend more time with him in his world since he spends most of his time in ours.

Brotha from another motha

The J man came home Tuesday night. He stunk, his feet were filthy, and his hair smelled like crap and I loved it. After we had some dinner, nothing like Chinese take-out on your first night home, he went into a soapy bubble  gum scented bubble bath. I scrubbed his feet and his hair and he left a lovely ring in the tub. Ahhh the smell of yumminess returned.

Jason was so excited to see our dog Riggs. Riggs is a Mini Australian Shepherd and is smarter than most Floridians-sorry but the truth is, he is. Riggs has been a depressed boy all summer since Bryan and Jason have been gone. The first weekend he sat by the garage door and cried.  Jason only wanted to snuggle with him and our cat. Jason and I always say that he and  Riggs  are brothas from another motha. Jason used to crack up from that when he was little. And Casey, the only other female in our house is a sista from another mista. Sooo silly but we love our pets dearly. It’s interesting that many people are now getting service dogs for their children with autism. Riggs would be the best service dog ever!! Bryan does not play with Riggs too much, but Riggs is definitely at work. He follows the boys around all of the time. The only time he ever really got tough with me was about 4 years ago when I was having a very tough time with Bryan. Bryan and I were having a physical scuffle and Riggs acted like he was going to bite me. When the kids play rough he gets right in the middle. When the boys swim he circles the pool as long as they are in and barks if they jump in or go underwater.

So what do crazy parents do? They decide to get another dog. We are adopting a puppy Australian Shepherd. This puppy will have a brother in NJ. Our friends Marnie and Kenny have a dog from this breeder and when the Mom had another litter, they decided to get another Aussie (so you see we have crazy friends too!!). We are getting a brother from the same mother!!! So excited for this new edition.

Next week Bryan comes home. I am flying up to pick him up and I can’t wait to tell him about the puppy too. Although he does not interact with the pets too much, he does like them and is always aware of them. I know he likes puppies. Like little children, they love you up and don’t care about anything but affection. Bryan will love the puppy licks and the puppy bites. Let the insanity begin.