Sugar, yes please.

There is truly nothing greater in this world than the joy your child brings to you. While the last week or so has brought some of the greatest highs, I have experienced some significant lows too. I try to keep the highs front and center, but I often find myself shaking my head at some of the nonsense in my life and some of the negativity that tries to latch onto me. One of the challenges I face, as do many others, is juggling all of my responsibilities. I get a lot of “you have a lot on your plate” to which I reply, “my plate is a platter!!” but hey it’s my plate so whatever. Everyone does this, so it’s not in any way unique to me, however, I not only want to and have to handle them, I want to do them well and with a good, positive attitude. I function well at a high activity rate, but every now and then one thing pushes way too far and it’s the straw that broke the camel’s back. I am reminded of that silly board game that was around when I was a kid where you literally kept piling straws in a plastic camel’s back and then when there was one too many and that damn camel fell, you lost the game. ha! Sometimes I feel like that camel (ok, not a great visual) and I’m daring people to put more on. So what happens when there is one too many…? I don’t have the luxury of hiding out from my responsibilities. I do try to do as many fun things as possible as a way counterbalance many of these difficult or upsetting things. Work hard/play hard may be a cliche but for me, it fits. I just don’t want to miss anything!! straw

So yesterday I was at maximum capacity for BS, nonsense, stress, aggravation, responsibilities, etc. A few things have been brewing and a few things have been tugging at me and I was just feeling a melt down come on. Not exactly a meltdown, more of an implosion where a good cry/sob was imminent. One of those times where I wish I had the ability to go home, get into bed, under the covers, and just get into the fetal position for a few days.  No such luck! I had to take the boys to the orthodontist in the middle of the day. Not the best timing, but what can you do; they were taking them at the same time so that helps but after being out of the office for two days last week, I was feeling very work overwhelmed.  They decided to take Bryan’s braces off and while that is exciting and great, anything with Bryan has to be choreographed properly. To make a long story short, we needed some lasering of his gums and some bonding which were all supposed to happen at that appointment when the braces came off. It was not scheduled properly by the orthodontist and that was about one straw too many for me. You see Bryan’s teeth had shifted previously after the braces came off because he would not wear his retainer and removed the permanent retainers multiple times. He had to get his braces put back on so you see this was sort of big deal. While we were trying to work it out, Bryan was so excited to get his braces off. The orthodontist’s office is an open room with many treatment chairs where lots of assistants are working on kids, in other words, a room full of about 12 people plus the two orthodontists who come in and out. Bryan was so elated, he grabbed Jason and me and the assistant and made us put our hands in the middle (as if we were a sports team getting ready to play) and he said “1, 2,3, braces off,  yay!!” We all lifted our arms up in unison. The whole office erupted in laughter and cheers and then I was struggling to hold back the love cry. He completely leveled me. How could I possibly feel anything but joy?? Get a grip Jane. Jason and I giggled and smiled and the whole thing was met with hugs and high fives. Everyone in the office, including other patients, assistants, office staff, doctors, etc. were laughing and smiling. After that Bryan had to have several injections in his palate for the laser and impressions and bonding. He sat like a champ. No anxiety, no squirming, nothing. If you know autism you know one thing: what is easy is hard, what is hard is easy. He never moved for a minute and sat there for his work for an  hour and a half. The minute he got up the anxiety kicked back in and he wanted to know about when he would get picked up from camp in August.

For me, a great reminder that no matter how bad you feel, no matter what is getting you down, that one drop of sugar can make everything sweeter.

A letter to me.

You know all of the clichés; hindsight is 20/20, can’t look back, learn from your mistakes. I get it, no one knows what they don’t know, but it would be so great if you could just go back in time for some basic life lessons. April is Autism Awareness Month, so it’s always time to think about where we are on the journey now, as compared to when we first busted out our compass and started trekking forward. So what would I say to my younger self, the newish mom, absorbing and coping with all things PDD (Pervasive Developmental Disorder), then Autism? I think it would be pretty basic, but as most of us know the good stuff is always fairly obvious.

  • Listen with your heart. Sooo easy to get caught up in what others tell you. “you should try this” or “my kid did that”. Every kid on the spectrum is so different and most of these kids, particularly Bryan, have language deficits and cannot tell you exactly what they need or feel. Trust your mommy gut, feel your way through, it won’t let you down. If you know in your heart something is good or bad for your kid, go with it. My heart never lets me down.
  • Don’t judge. This is probably one of the biggest lessons I have learned. When you see a family struggling with their kid or if you see a kid acting up, don’t judge. I realize now that so many people have all kinds of personal struggles and each person copes differently. Just because it’s not my way, doesn’t mean I should judge that person. I have not walked in their shoes and vice versa.
  • Be open. Be open to new people, new things happening, new ideas. Be open to other treatments and therapies besides established medical protocols. I revered doctors growing up, and still do, mostly, but I learned that I am a smart person and just because you went to medical school doesn’t mean you know all. One little side note: if something looks like it’s too good to be true, it usually is…
  • Always show respect. When dealing with teachers, doctors, therapists, show them respect for their perspective, expertise,  and time. The old expression, you get more with honey than vinegar, rings true here. Each of these people interact with your kid in a different way and have different life and professional experiences. You don’t have to agree, you don’t have to take your kid back to that person, but even the  negative experiences have left me with some little nugget of learning. A very close doctor friend of mine told me a long time ago to see lots of different doctors. Each see different patients and you never know when something may trigger a reference or an idea for you. Autism is not black and white so things are always changing. You have to change with it and keep getting more info.
  • Slow down. I spent my younger years concerned with reaching goals. I still set and like to reach goals but with Bryan and with my adult self I realize the journey, the process, the pace, can be as important as the goal itself. I’ve said many times that raising a child with autism is like raising a child in slow motion. Things that typical kids achieve at a certain age don’t go that way. I have clichés for this too, it’s a marathon, not a sprint, but there is truth here. You need to make peace with the idea that your kid may not do things “on time” or at all, but either way, take a deep breath and enjoy him.
  • Acknowledge progress. Great story from yesterday. Perhaps this is what got me to blog anyway. I took the boys out to lunch with my mom and sister. Nothing swanky, just Toojays (deli/diner in SOFL). We have done this many times. Bryan was antsy in his chair and hungry and just a little off. Lunch was tense and then we left. Jason took Bryan swimming and all seemed a bit better. Around 4:30 Bryan was very agitated and hurt Jason. Bryan likes to dig his nails into us, clearly a sensory thing, and broke the skin on Jason’s hand. Here is where the good stuff happens. It was a little early for Bryan’s night meds but we encouraged him to take them. He did but I have learned that if he thinks you can get over his bad behavior, if you can acknowledge that something bad happened but you can move forward, he can calm himself down. I told him, “everyone has a bad moment. You now need to get over it and calm down.” I have also find that if I get even nicer, warmer, sweeter, he will calm down. If I get angry or upset, there will be a colossal melt down.Hmm, so am I acknowledging his progress or mine?? In any event, my younger self could’ve used this advice, although I have to say sometimes this is way easier said than done.
  • Open up. My parents are/were very private. Too private if you ask me. I learned that sharing with others helps others to share with you. Parents are the best resource for autism and by sharing my experiences I have had others share their experiences with me. Priceless, awesome, fantastic!!!  If you are an autism parent you will know that there is truly nothing better than another parent telling you the real deal on a therapy, treatment, school, etc. On Saturday I took Bryan to Golf Buddies. I started chatting with another Mom who I have known for years, but have not known well at all. I have watched her daughter at all of the buddy sports and she has seen Bryan. We talked nonstop for the entire hour. We tackled major issues, marriage and divorce, school, housing for our kids, etc. The hour flew by and when I left her I had that feeling of community, the feeling of “wow that lady is my peeps” kind of feeling. The warmth of that hour really inspired me to think about how truly lucky I am to have Bryan and all that goes along with him.

 

Gut check.

IMG_1514This week has been filled with lots of phone calls with friends dealing with all sorts of medical and behavioral issues with their kids. I love to brainstorm with my friends for their kids and I am grateful when they do the same for me. One theme over the years that keeps surfacing is the conflict between what an expert or so called expert tells you and reality. Growing up I always revered medical professionals and really professionals of all types as the ones who were in the know. I could not as a kid or even a young adult think that someone with a real degree, accomplished, could be wrong or not qualified to give an opinion, diagnosis, strategy. Autism. Once you hear that word, it’s a crap-shoot. This is not exactly a newsflash but I feel there is a really important lesson here that needs to be explored. And, it’s not limited to autism. Any medical/behavioral issue that your kid is facing has the potential to make you question everything.

So you take your kid to a doctor, a specialist, a clinician, a therapist. This person is often highly recommended by someone you trust, or they are referred to you for something so foreign to you, that any recommendation feels like a life-preserver. The problem is, they only get a glimpse of what you are dealing with or what you see on a day-to-day basis. We have been to many of these types of appointments for both boys over the years. The problem is that as a parent, and now I may take some flak for this, as the mom, somewhere in between your brain, heart and gut things seem off.  I love examples, so here goes:

  • You go to the psychologist to deal with behavioral issues. For Bryan it can be the constant anxiety and talking. He is forever asking “are you happy?” and says Mom about a thousand times an hour. Psychologist says, I think you will have to start ignoring him. Sounds like an easy fix, right? Just let the kid talk and go about your business, after a while, he will stop if you are not paying attention to him. Oh ok, doc. Here is my response: we have a guest room, please come stay the weekend and show me how you would display this ignoring behavior. Or better yet, come and just spend the evening, I super duper triple dare you. I say it can be done for a short time, but no one can sustain that kind of ignoring.  So while very good and easy clinical advice, the practical application is far from practical.
  • You decide to get a second opinion. It’s something important, something that is nagging at you that you want to have double checked. Typically this could involve a neurologist, a psychiatrist, some sort of MD. You go for peace of mind but you leave with very few pieces of your mind. They want more tests some invasive, some not so much, and they completely discount the previous doctors diagnosis/thoughts. What do you do? Where is the quarterback for your  team telling you how to run this play? What’s the next move? Was the previous doctor an idiot? How do you know?
  • You decide to come up with some strategy to help you cope with a bad behavior. You know it may only be a band-aid, but band-aids are a pretty reliable product. You speak to a clinician who tells you that this is going to help you now, but may be more of a problem later. You shake your head and again invite this person to spend the weekend.

So really, what’s the point of this? Why am I telling you about this stuff? I’m going to tell you. You, the parent, the mom, you are the one who knows. Trust your gut!! Trust the parent/mommy instincts that got you this far. If something a professional tells you sounds too theoretical, too impractical, too difficult, say thanks and move on. We all expect too much. As a parent of a child with autism they want you to come home after work, spend quality time with your kid practicing use of language, do some sensory exercises and, oh yeah, my personal favorite, limit their use of electronics. All day long the kid was receiving behavioral incentives in the form of electronics and then you get home and tell him he can only use it for 30 mins. Good f-g luck to you. The point is being a parent is a lot more about loving and accepting your kid, in my opinion, than being his or her doctor, therapist, etc. Your kid is just happy to have your attention, being together and just sharing any activity is more important than the activity itself. I find my boys are really happy when we are driving. They know that I Iove my  new car and I find if I am singing, yes singing, they know I’m happy. Jason will spontaneously say,”Mom I love you” when he hears me singing. It’s not because I have a great voice, it’s just that he can hear the happiness.

So for some of the heavy duty medical stuff, I say get a few opinions but remember they don’t know all. Anyone that is dismissive of your opinion or condescending needs to be called out on it or immediately discounted. Remember anyone can go to school to learn something, but no one knows your kid better than you.