Always two there are, no more no less. A master and an apprentice.

So I’m quoting Yoda. Does that make me a Star Wars geek? I guess maybe, but I’m really not, I just dig his quirky  little backward way of talking and his intonation. His sayings are clever and provocative. They make you smile just as you say them.  Star Wars has  a significant place in pop culture and I can respect that, for sure.yoda

I am forever the apprentice, never the master, particularly as it relates to Bryan. Recently I had a conversation with a case worker that assists in navigating benefits at work. This man is an Occupational Therapist by education and practice, but he is also a trusted advisor to me. I have been speaking with this man, approximately 2-3 times per year for the last 7 years. He knows all about Bryan, his challenges, his needs and his progress. Another example, for sure, that it truly takes a village to raise a kid with autism. So this man helps me to navigate the available benefits and based on our discussions and his probing, we talk about what Bryan may or may not need for the upcoming year and he translates that into credible recommendations for assistance. One of the benefits of this benefit (ha!) is that this man really tries to understand who Bryan is, although they have not and will not meet, and tries to understand my philosophy in parenting Bryan. He can gauge progress by asking pointed questions the answers which reveal  growth or deficiencies. He forces me to not only think about what we are focusing on now, but the 3-5 year look ahead. Both are necessary and practical, yet stir emotions. Bryan will be 17 this month (there must be a math error) and it’s exciting to see what he can do now and where he can go. So I was describing to this man all of the independent functioning Bryan is doing and all of the great things he can do at home, at school etc. However, and this is the great part, there is always more. Always more to be done, always more to implement, always more to learn. He made two great suggestions. He knows Bryan is very visual, as are many kids on the spectrum, and I told him that Bryan likes a written schedule and also loves his phone and ipad. He suggested we add all of his plans on a google calendar. Duh, I use it all of the time, why didn’t I think of that??? Bryan will love that. So easy, so simple, yet so smart.

Another thing he and I talked about was Bryan’s use of money. At school he has personal finance aka math and he loves it. My caseworker suggested getting Bryan a prepaid debit card so he could pay for things and learn how to use the debit/credit machines. Another fantastic idea, all geared toward independence. My most favorite thing about talking to people who work with or are parents of kids on the spectrum are just these little tidbits we can share. It’s never the big things; we don’t miss those, but those small incremental wins are so fruitful. The student, grasshopper, apprentice in me is awakened by these suggestions and now I’m focused again on the possibilities. Bryan came home from school a few weeks ago and told me he is now going to FAU on Thursdays, “with the big kids”. He was very proud of himself and I knew based on his sense of urgency that the school told  him to make sure he told me. It’s not the rate of progress that matters, only the direction. So much behind us, yet so far ahead. Two weeks we went to Disney, a request by Bryan in celebration of his upcoming birthday. I like Disney but have been there many many times (incidental benefit of Florida residency) and he used to have tremendous anxiety there, even though he loves it. He was not anxious at all. He was over the moon. Jason and I shared a few quick “look how happy he is” moments when observing Bryan. So we decided to go on the Speedway at the Magic Kingdom. You know, those seriously old cars on a metal track. Jason went on his own and I went with Bryan. In my head I really wanted to see how he could navigate the car. He was fine with the driving part, as I knew he would be, but he was so distracted by people; nope not ready for real driving  yet. Years ago I would have panicked that this means he won’t be able to drive. Now I know it just means he will not be driving anytime soon because he’s not mature enough to focus on the road without the distractions. Bryan’s sheer presence reminds me that there is always plenty to learn if you are willing to be a student.

 

Good Feelings Gone

nemoYou know that scene in Finding Nemo where Marlin and Dory are swimming and are feeling happy. On their quest to find Nemo they encounter various sea creatures and obstacles, but at this moment happiness abounds.  They are circling around and gently gliding along, as if all was right with the world. They feel encapsulated with a careless warmth. They are oblivious to the scary big fish luring them in with his magical soft light. The fish goes in for the kill and Dory shouts “good feelings gone!” Just like that they are now swimming for their lives, dodging the scary fish and hoping to escape. I get this feeling sometimes like things are moving along really well, work is going well, boys are doing well and I’m doing well emotionally, physically and spiritually, and then something or someone will crank up the buzzkill and all goodness will collapse into air.

Working at the place I do, which is fabulous, December is over the top. We are rewarded financially and valued beyond comprehension for our efforts. The shot of financial and thankful adrenaline propels us to a great start for the new year. I was able to share with my kids and express to them the ever important lesson of hard work reaps great benefits. I think they are now at an age and a mental capacity to not only understand this literally but feel it in their hearts. Last weekend I went on a super fun excursion to the Bahamas. I had looked forward to going and except for less than stellar weather, it surely didn’t disappoint. I am always trying to find the lesson; for the boys they are obvious, basic growing up lessons, for me, to appreciate what I have, to live life with fun and joy and focus on what are truly the sweetest parts of life.

However, and of course there is always a however or a but, the tough reality of my responsibility load is never too far in the shadows. Of course I never really escape my responsibilities, but a pina colada at a gorgeous resort can somehow stay them for a while. Over the years there have been many reality jolts that have sent me into a downward spiral; a work issue, a Bryan issue, etc. The squeaky floorboard of an issue could not be silenced and essentially my whole house would collapse over it. At this point in my life’s journey I am no longer demolishing the house over a squeaky floorboard or a shorted outlet. My skin is thicker, tougher and experience is the quintessential professor. Last night I got home after a very challenging day at work. I needed to process what had occurred and figure out the best way to remove any emotional feelings from what happened and apply logic and said experience. The only way for me to do this, is to distract myself enough so that my head clears of the problem for re focus at a later time. Clarity for me requires emotional distance and at least at this point in my life, I know it. I decided to have a conversation with the boys about a short vacation over Xmas week. Inasmuch as we had two trips this year, to DC and LA, I am not in the position to do anything crazy, and I do want to take them to Europe next year, so I just was looking for a little getaway. Well, here’s what I learned. Autism is alive and well in my home. We talked about Busch Gardens, Captiva, Marco Island, Vero, etc. We talked about Orlando, the Keys, Miami Beach, Ft. Lauderdale Beach, staycation stuff etc. Bryan flipped out. He is great with transitioning if he knows the plan. This abstract, what if, why, how, discussion that Jason and I were having, including visuals on my open laptop, just stressed him to the max. His anxiety level was so amped up that it was visual and palpable. The power struggle between the boys heated up and a physical skirmish ensued. So as the Mom, who is now way smaller than either of these two testosterone filled teenage boys, I kind of need to get out of the way or I’m going to end up across the room. But since I am the authority, police, dictator (no it’s not a democracy in my house), I had to call to order. A few slammed doors later everyone was in their own corner and I was able to sit down and figure out what the heck just happened. I was grappling between, damn these two spoiled kids can’t agree on a vacation, wah wah wah, and hmm, maybe I allowed for too much speculation, too much input to make this easy. I then had to visit the prisoners to sort out the damage. Bryan is way better now at self soothing and while he couldn’t stop expressing his remorse and his anxiety, the physical control now present is critical to my survival. Jason is trickier to navigate since he gets me more and took the zero and fessed up a fairly heartfelt apology. At this point, I’m done, toast, spent. Went upstairs took a hot bath and crawled into bed. Today is a new day and I’m ready for it.

Have courage and be kind….

cinderellaThere is truly no end to negativity surrounding people with disabilities. When it is your child, no matter how many times you encounter new people and their reactions to your kid, you feel like you were hit with a brick. Sometimes I shake my head and think, are people really that out of touch? Are people really that insensitive or ignorant? I try to give everyone the benefit of the doubt; maybe they don’t know much about autism, maybe they have not experienced it first hand. Here’s what I do know:  you do not have to have something first hand to be kind. We just saw the new Cinderella movie on Friday. I will admit I was the only mom with teenage and pre-teenage boys in the theater, but Bryan loves all movies and Jason is a good sport. It was pretty good for an old story, (Lauren Henschel-the actress looks very much like you do but not as pretty) and the mom’s message, before she dies (all moms die in Disney movies) is to have courage and  be kind.This may now be my new mantra. I have always been a fierce protector of Bryan but having courage is a good one. I do have the courage to speak up for my boy, to educate, raise awareness, and let people know what is and what is not ok.

Here are some simple rules, as I see them, when faced with the unfamiliar autism spectrum disorder.

1. Do not judge my parenting skills. You have no idea how you will behave if you have not slept well in days and your large teenage kid is screaming and pinching you and his sibling.

2.  Do not judge his future. You have no idea how smart he is, what he is capable of, or where he will land. If you do, call Diane Sawyer and get your ass on TV as a genius.

3. Do not judge him by his disorder, open your mind to his charm. He is not the bad behaviors, that is only a component of him, I guarantee he is 10x smarter than you can ever imagine and is sweeter than sugar.

4. Do not judge his communication skills as the barometer of his level of understanding. Receptive learning is much easier than speaking.

Since I try to learn from every situation, I have learned this. I love autism! It pushes me beyond my comfort zone as a person, it challenges me every day to dig deeper, to learn, to grow and to push. I am where I am in my life not in spite of it but because of it. I know who I want to be with and how I want to handle myself. Thank you Bryan for teaching me the ultimate you can’t judge a book by its cover.

So I say to all of my peeps out there if you can’t have courage to deal with autism, at least be kind to the parents.

2014; brought to you by the letter D.

the-meaning-of-DTomorrow is December 1. The year is almost over. 2014 will be memorable for many reasons, not the least of which is that this is the year Earl and I get divorced. Our hearing is on Dec 16 and then we will be divorced. We are still living together for now and that is a function of circumstances. That D has certainly forced reflection on other D words. The despair you feel in going through a divorce, no matter the circumstances, is ever-present. Fortunately, we are focused on being amicable, if not for our own sanity, but for the sanity of our boys. People are constantly asking me, “how are the boys doing?”. To be truthful, I’m not sure. I have no benchmark, no sense of this, I’ve never had to deal first hand with divorce. Earl’s dad died at a young age, but his folks were still married, and my folks will be married 57 years in January. So basically my response is that I don’t really know yet, too soon to tell. I am a student of all things children related and I have been researching how to minimize the deep impact the divorce will have on the children. I have positive and negative examples all around me. The definitive thing, I’m finding is, how you and your soon to be ex-spouse relate. Model respect and good behavior. Do as I do, not as I say. Jason asks questions and I try to be as honest as appropriate. I tell him we love each other, but our family will be different. Bryan, however, asks nothing. This is alarming. Bryan knows all. He was the one standing outside the rooms when we were arguing, talking, and deciding. Bryan, like many kids with autism, is great receptively. He understands everything he hears. So how do I navigate Bryan on this unfamiliar course? How do I let him know none of this is his fault, if anything, autism bonded us, not the other way around. How do I answer the unasked questions? I have been trying to take the opportunities that present themselves. If we are alone, driving to speech, I tell him the custody arrangement. I tell him slowly and carefully. At night when he goes to bed I remind him that he is loved and precious, and in no way should he feel disregarded. It’s tough. Although he does not say much, he does say “we’re getting divorced.” It’s true, it’s not just Earl and me, it’s all of us. When he says that, it’s like taking a dagger; however, he does need to be able to say it. Bryan needs to be given the language for the situation. He certainly knows the concepts but what to say and how to express it are very challenging for him. He has not been sleeping well. Typically Bryan passes out or announces he’s going to bed, but lately he has been up “exploring his body” oy, and just feeling anxious. Puberty plus autism plus divorce equals delirium for the rest of us. I can’t think of the last good, fitful night of rest. Friday night he wouldn’t go to bed until after 11 and then was up since 3 am. He is not quiet, he is never quiet. He knows he is upsetting us, irritating us, driving us a little nuts. I feel for him; he can’t just say what he needs or wants to. At times I feel defeated, down, depressed. The “D”s of my 2014.

There is always another letter and another year. Looking for my “E” in 2015;to work on feeling empowered and energized.

Nice try, Mom

I have not blogged in a very long time. I suppose it’s a combination of distraction, lack of focus, lack of material worth blogging about. I think on some level the need to share about Bryan has slowed down. Some of the issues that we faced when he was younger, the constant worry, craziness and delirium which is autism has not gone away but has diminished in some ways. Bryan just got home from his 3rd year at Camp LeeMar. He goes for 7 weeks and this year he was in the “seniors” group. How is my boy in the senior of anything? To translate, at LeeMar this means he is in a cabin and not in the main building, which is like a dorm. A cabin, with AC. Yikes. At this camp they do all of the things typical kids do at camp but they also have academics and speech. Kind of the best of both worlds. He came home tall and thin. When he was away I was not really thinking about autism too much. I don’t really think of him in those terms anymore, it’s almost like it doesn’t fit exactly right. When I think of Bryan and his autism,  I think of the 7-9 year old Bryan pinching,  screaming and not really communicating effectively. I had a shock to the system last Saturday. I went to the open house for a music program for special  needs kids at the School of Rock. I am a huge supporter of this program and participated in some of the planning for the new curriculum. The folks there are so eager to work with our kids and to make the program a success; which I know it will be. There was a young man  at the open house who is a little older than Bryan and I have known for years through Parkland Buddy Sports. He was sitting on a chair and his behaviors, talking a little to himself, his mannerisms, all of a sudden I felt like I was hit with a brick. OMG,  Bryan is coming home and he still has autism. If you are not an autism parent you will think I’m insane. What do you mean he still has autism? It’s not like I ever thought it went away, but when  I think of him I don’t think about autism. I just think about Bryan. They are not separable in reality but they are separable in my heart. The only analogy I can make is that when I think about Jason, I think about him and his personality,not any of his “behaviors”.  So sitting at this meeting it just jolted me to the fact that Bryan is coming home and I will now be back in my world of friends, supporters and community which is autism. It’s not a bad thing at all, just a reality check. 

Bryan is doing great. He communicates pretty well now and can have a fairly decent conversation. I would say the toughest day to day challenge is getting him  to stop repeating things over and over and calming his anxiety. Piece of cake! The maturity, the coping skills have increased dramatically. Yesterday was a huge day. We went bowling after lunch,Bryan, Jason and me. I have taken the week off from work to spend time with them and it’s been a treat for me. If you are a full  time working Mom, which I am, a staycation with the boys is like a bouquet of roses, each day a different one blooms and shows you something beautiful, and expensive!!! Ok, back to the bowling. I am not a dopey mom. I know the only reason they are going bowling is to get to the arcade when we are finished. No bowling, no arcade! We agree to bowl one game (if you are wondering why take them at all, you have never spent a summer in South Florida where it’s 100 degrees plus 100% humidity). I am the 3rd bowler and after each of us go, we say things like “good one”, “nice one” and then Bryan says “Nice try, Mom”. So appropriate. I have that warm feeling inside knowing that he is with us, in the moment, participating. Jason and I share our secret knowing smile when we acknowledge a “Bryan thing”.

We left bowling and went to Publix. We came home and went to middle school orientation for Jason. I could write 3 blogs about that. We went to each of his new classes and by the 3rd period both Jason and I started to relax. We didn’t realize that were going to go meet each teacher and essentially follow his schedule. Bryan was not happy; he didn’t know either that we were going to do this and the unexpected plan was a little tricky for him to navigate. The 12 year old Bryan could never have handled this but the 14 year old Bryan was able to hold it together. It almost went south a few times but he has better coping skills now. He also recognized that it was an important time for Jason and quite honestly, that means the most. 

Jason never ceases to amaze me. He never once suggested Bryan should  stay home even though he knew it could be tough for Bryan or potentially embarrassing. Only once or twice did Jason say to me, please ask Bryan to be quiet. Jason’s true and pure acceptance of Bryan for who he is represents one of the best parts of my life.

I am easing my way back into blogging, autism and all things middle school. Note to self: after school supply shopping pick up a new bottle of Citron Vodka.

Payback’s a big bitch

The fun never ends. I had episodes of anxiety as a child. I had diarrhea before anything important, which included a test, the first day of school every year, and any significant change. I made my parents miserable and I worked them over. I screamed, cried and carried on. When Bryan was little, about 4. he had a very tough time adjusting to school. I watched him through a doorway cry and scream and say “I want Mommy” for 45 mins. Payback, ugh. Fast forward….last week Jason was having some preteen social issues at school. You know, the usual, wasn’t picked for a team in PE, some kid teased him about something. On Thursday night he was completely distraught, stomach ache, and a defiant declaration of I’m not going to school tomorrow. Yep, my mini me. And not in a good way if you know what I mean. On Friday morning I had to beg him to get up to go to school. My inner child was so angry at the adult me. My child self promised my adult self that I would never make my kid go to school if they were upset. I dropped him off at school, watching him walk away from the car with his head down and felt horrible. My heart was in my throat all day.
Tonight Earl has softball and since the weather has been so nice I thought maybe I would take the boys to a local burger place, sit outside and have some fun. Well basically we got hit by a brick. That brick was Bryan. It has, thankfully, been a long time since Jason and I experienced what we did tonight. Let me see if I can paint the picture for you. We walk into Burger Fi. You have to go up to the counter to order. Two elderly ladies were in front of us trying to figure out the menu and what to order. Bryan is very impatient, particularly when he is hungry. However, it was early and he is able to control himself. Well, no such luck tonight. He pinched both Jason and me about 10 times each. What happens is he pinches one of us, very hard, because it’s with all of his strength, we react and then he goes for the other one. I tried to stay calm and calm both of them down. Bryan was upset and screaming and Jason was screaming and crying; part victim part disciplinarian. I don’t know what is wrong with me. I did not want to leave. Somewhere in me I wanted to prove to myself that I could hack it. Jason kept saying let’s get the food to go. I refused. Interestingly enough some people were looking at us but that only makes me get calmer, like I better dig deep to handle it. I knew Bryan was extremely upset because I had to talk him into eating and also to drink his soda. He absolutely could not get to himself. I wanted to feel bad for him but to be honest, I was a little afraid. This kid is super strong. I have to be confident that I can handle the 5’5″, 168 lb Bryan; it’s essential for my survival. I tried to dig deep and use calming words and tricks. Jason, who typically is so helpful when Bryan acts up, had nothing left in him. He was hurt, hungry and totally embarrassed. So what did this mother of the year do? I told Bryan if people see him hurting us, they are going to call the police. If they call the police they may take you away. Before you decide I am the worst mother ever, walk, not even a mile in my shoes, try 2 blocks. You see, there are layers here. Layers of fear, frustration, empathy for Jason, and overall exhaustion at work here. He desperately wanted ice cream/dessert but of course I refused. The drive home was not much better. He sat in the back while Jason and I sat up front, but he reached up and pinched Jason and me again and dug his nails into Jason’s scalp. So while attempting to drive one kid was screaming and the other was crying. We got home and I suggested that Bryan take a nice warm bath. The water typically calms him. But, like how I was as a child, I never wanted my parents to be upset with me, and Bryan is the same way. It pains him if we are mad at him and he cannot chill out. The bath barely helped, so now I’m just praying for exhaustion and sleep.
So, Mom and Dad, I’m sorry for the anguish I caused but payback’s a bitch. Oh, and yes, I took a Xanax@

Timing is Everything!

There is this thing down here in Florida, not sure if it’s everywhere so I hope I don’t sound ignorant. It’s called the medwaiver list and it’s something you need to get your child with a disability on so they can get some government funding. Literally speaking: Medicaid Waiver Programs allow recipients to ‘waive’ institutionalization and instead choose to direct services to assist them to live in the community. It is administered through the Agency for Persons with Disabilities (APD). I have avoided doing this for a long time because there is a waiting list of thousands and no real money has been devoted to it yet. I have felt guilty about not doing this and I was somewhat pleased to learn that many of my “autism mommies” have not done this either. There is coordination of paperwork and an intake meeting that involves bringing your child. I once went to a meeting about doing this years ago but somehow I felt it wasn’t worth my time. A close friend of ours and terrific advocate recently called me out on this. He let me know it was not ok to avoid the list or not get your kid signed up. So I faced it, went to the website downloaded the application and sent it in. Not long after I received a letter stating that I had to schedule my intake meeting, bring a long list of documentation and Bryan. Ok, I can do this, no big deal. I was feeling proud of myself and grateful to our friend for giving me the nudge I needed. I don’t typically even need a nudge for anything, but it was one of those risk/reward assessments I do in my head so it got pushed down in priority. Bryan and I went to the intake meeting last week. We had a 9am appointment and often Bryan is anxious if he doesn’t know what to expect. However, alone time with Mommy on a weekday morning, without a doctor’s appointment is warmly accepted by Bryan and so he was calm and delicious on the drive to Fort Lauderdale. We were taken right away and we sat with the Human Services Counselor, a very nice woman, in her tiny cluttered office. She went through all of our papers and let us know what was needed as far as follow up paperwork. Then…… she decided to ask Bryan a bunch of questions. Not one or two questions, but many, about 10. Here is the kicker, he answered them all calmly and correctly. Now, maybe for your kid this is easy, but not for Bryan. The questions were not complex, “what is your birthday”, “what is your address, phone number, etc.”. These questions were questions that all teenagers should be able to answer, and I was confident when sitting there that Bryan did in fact know the answers. The issue really is more about whether or not he would be forthcoming with the information, if the speaker would ask the questions slowly and clearly enough for him to understand and how many questions would he tolerate before he screamed or said “no more”. Bryan has a saturation point where he will no longer stay tuned in and when you reach it, trust me, you will know. But on this day, for this woman, who in essence was somewhat gauging his disability, he answered questions easily, correctly and confidently. He is often very soft spoken when answering questions, although quite loud most other times, and for this interview his tone, voice level, were appropriate. At the end she said to me, “he was so well behaved”. Now, the real true mother in me was beaming with pride. I have taken him to dozens of these types of things, interviews, psychologists, speech therapists, etc. where he has not answered or provided an answer that was completely inappropriate. But, the inner comedienne, the inner autism advocate mom in me, was saying NOW you answer everything right? Now, when it’s ok to be “disabled” or where some modicum of judgment by this woman might put your paper on one pile (needs lots of aid) vs. another (pretty good, don’t worry about him) and now you have to be sooooo awesome. It’s just irony and of course the real mom snapped back and felt proud. We walked out, and as always, Bryan put his arm around me and said “I did a great job with the lady”. We got into the car and I took him to school. During the ride Bryan was somewhat quiet. I wanted to ask him some things but he is rarely quiet so I try to leave it alone. I took him to the front door of school and signed him in. I watched him walk away and thought to myself how far we have come, how he senses from me when something is important or when we are doing something for his benefit. He knows that if Mommy takes off work to take him to an appointment it means it’s important. He also knows time together on a Tuesday morning is special, just like him.