Ugh!

Ugh – winter in MN has me down. I’m tired of it – and I’m fairly certain I sound like a broken record, because if I flip the calendar back a year, with almost certainty, I wrote a red couch entry having to do with the difficulty we experience every year around this time. That, unfortunately, is not different. What is different is how I’m handling it. I’m not doing my best, and I own it here and now.

Here’s the deal – puberty sucks. My poor Elliott has come so far in his journey living with autism – heck, in just a few months, it will have been 10 years since his diagnosis with ASD (gulp) – that’s crazy, isn’t it? And while we have so many things to celebrate, as a Mom, I can’t help always wanting more for him. If I don’t hold the bar high, who will? I will never stop believing in his ability to overcome adversity. I’ve seen it happen, and it’s worth waiting for. Sometimes it requires a lot of patience.

But autism is not always easy. We have days that are fairly unpleasant – heck, we have months that are fairly unpleasant! Sometimes everything about life gets hard – and it is success just to make it to the end of the day. (These are the days that I appreciate the occasional margarita). That’s just life – and I’m sort of used to it by now. That said, puberty is a whole different animal – yuck!

I feel bad for E man. No doubt, puberty can be an ugly experience for anyone – let alone additional challenges with social skills and attention/focus issues. Elliott has been on ADHD medications for over 2 years now. We are grateful they have helped him – they are not helpful to everyone who has autism, but combined with a strong behavioral plan and the support of E’s school, he has had relative success taking stimulants. They have not solved the world’s problems to be sure, but have helped him navigate school with more success, and allowed him some additional help as he tackles the reading and writing challenges that are most difficult for him.

When his hormone levels began changing last fall, it was apparent right away that something would have to change. Suddenly, instead of just getting frustrated about things like which grocery store we went to or what flavor of Sun Chips we opted for, our buddy would suddenly fly into a rage like no other, and even started to exhibit aggression with us. Where before he might tear up or need to go to the red couch to regain composure, now he was in a rage for hours on end, destroying property and at times, trying to hurt us. It was a really long, frustrating fall here in Eagan.

That said, we reached out for help, and got it in a number of ways and are ever so grateful to have a “village” that supports us when the going gets tough.

One thing we learned is that it is not uncommon for kids with autism to start reacting differently to medications when the ugliness of puberty begins. The plain old extended-release Adderall he had been taking for quite some time would have to go – it was exacerbating his difficulties.

That’s the pits for a number of reasons because guess what -change is hard for lots of people with ASD, including Elliott. The E man is a kiddo with exceptional challenges focusing and attending as he is so easily distracted by whatever is going on in his environment. (Yes, I am trying to read this fascinating “Arthur” book – whoa who just sneezed, or walked by in the hall, or laughed, or rustled some papers – now add E into a classroom of 33 other students which is the size of his mainstream room, and well, it’s not pretty). While I was one of those parents who put off trying medication for many years hoping to try every other angle first, when we finally did, I regretted with every fiber of my being not having done it sooner. While the decision to medicate is a highly personal choice each family must make for themselves, I know many of my peers who have struggled with the decision just as we did. Our bummer is that Adderall XR had been enormously helpful for Elliott and the thought of having to change up something that had been working so well was more than a little frustrating.

Sure enough, the next few months were full of craziness as we trialed some alternatives. What we learned early on was that it was better on E’s system to opt for a short release version of stimulants. It was less stressful on his body, and the rage he had been experiencing dissipated. But, there were serious side effects that began to emerge – a variety of tics and stims that negated any positives that the medication provided. We tried a number of things – Ritalin, Concerta, short acting Adderall, etc. The problems have continued – so much so that he has come home crying several times as the kids at school have begun making fun of him for making odd faces, hopping up and down and opening his mouth up very widely for several seconds at a time. Let’s just say the tics were not subtle. They were terribly noticeable, and while E had no control over them, it was not that unusual that kids would begin to take note of them.

Finally, we had a heart to heart with our Developmental Pediatrician, and after weighing all the feedback forms from school, therapy and home, he suggested we try a different medication that was not as well known, but that could help E with his attention challenges without so many side effects. He also suggested that I not Google it as it is an older medication, and is in the same family of drugs as crystal meth. Yeah, when anyone tells you not to Google something, and you’re a crazy autism Mom like me, the very first thing you do is Google it – like before even leaving the parking lot. Indeed, it had some weird links and the Wikipedia description was kind of funky, but in the end, we had tried all the traditional meds that most people have heard of, and they were not working. If a medication in the same family as crystal meth helps my boy – bring it on! Off I went to the pharmacy to fill it – and that’s where the ugliness started.

I’ve been doing this autism thing for a long while, and I’ve had more than a few unfortunate encounters with the general public who just think I’m the crappiest parent alive. The people who sneer at me in the grocery store when someone is having a giant meltdown, or when someone whose name starts with E asks a patron at Target whether they are a man or a woman (ouch) and while I’m trying to explain to them what’s going on someone nearby starts complaining about his horrible manners and my crappy parenting at having not addressed these things at his age. Yeah – I’ve developed some thick skin about these things, and mostly, I just blow it off or if I’m PMSey, I might give them my standard spiel which is something like “My son has autism, and he and I are doing the best we can”. (Generally shuts them up and hopefully feel a bit jerky). What I didn’t expect was to feel so judged by Pharmacists.

So following the prescription from E’s specialty doctor, I took it to my local pharmacy to drop it off. I handed it to the person at the counter who took one look, got wide-eyed, and said she had to check on it. Soon, I heard the pharmacist make some crack about meth, laugh about giving this medication to a child, and then come over to tell me “we don’t carry that medication here”. I thought it was completely jerky, but decided not make a big deal about it, and moved on to pharmacy #2 – this time the person talked with the pharmacist who came to talk with me and said “we don’t carry that medication, and you won’t find it anywhere in Eagan”. Suffice it to say – 9 pharmacies later, we did not find the medication. Never have I felt so judged just for trying to help my son. 2 of the pharmacies were in hospitals – one even called to say they refused to fill it because the prescription was not written by one of their doctors. Hmmm – it was written by a University of Minnesota Physician – not that it matters, but it was hardly edgy. These are professionals – I have to wonder if they sneer and laugh at every man who walks into the pharmacy hoping to fill his Viagra prescription. Gee – do you think I don’t wish that more traditional medications would work for my son? Do you think I don’t wish he didn’t need to take any meds at all, and would not have to deal with the challenges of autism every day of his life? Bottom line – I should not feel obligated to share our life story with a pharmacy when I’m trying to help our son just so they understand why we’re not going with Ritalin rather than a derivative of crystal meth, and I’m mad that I encountered what felt like strong judgment from people who should do better.

Am I a bit sensitive – yes, clearly I am. It’s coming on the heels of an ugly situation at a restaurant where we had an exceptionally long wait, and when the server came to take our drink orders, Elliott raised his voice and said “where is my sprite?” It was not ok – and as soon as he said it, he approached her and apologized for what he had said. While it’s never ok to have bad manners, to be fair, it had been an eternity, and we were all a bit frustrated. He just expressed his frustration in a more over the top way than the rest of us. But, he also apologized and then left to calm his body down for a bit. In his absence, I told our server that I was sorry for what had happened and that my son has autism, is working on his social skills, and some days are easier than others. She looked at me in an unforgiving way and said “yeah, I knew something was wrong with him”.

Wow – sucker punch to the gut or what? Ouch. It is still bugging me 3 weeks later. Who says things like that?
Most of all, what I own is that I am for some reason holding on to these things and am not able to let them go. Why am I giving these creepy people so much power? I don’t know. Maybe because my patience is thin right now and I’m overwhelmed and in sort of a dark place with autism myself. Maybe because if autism had not sucker punched me when it did, I could have been one of these jerks I’m writing about (I hope not being a good liberal and all, but what if?) Maybe it’s February in MN, and I’ve spent a lot of time locked up in the house with a 12-year-old going through puberty and too many bad medication changes in the last few months and I’m dangling at the end of a long and worn out rope. Whatever the reason, I own that I’m letting these crappy situations get the best of me, and I’m outing myself here in hopes of venting and moving on.

Last weekend, I had the opportunity to hang out with a friend I went to high school with who is dealing with breast cancer. It had been a decade or more since I’d seen her, but when the opportunity arose to spend the evening with her and some other friends from the Class of 1985 (ouch that makes me feel old)) I jumped at the chance. I’m so glad I went because it made me realize that even though I live under the umbrella of autism, and can get caught up in it to the exclusion of a lot of life, we all have our issues. She is facing this challenging situation with the kind of grace, humor and spirit that I can only dream about. And you know what – if she needed to take a derivative of crystal meth to help her during her cancer journey, I would gladly take on an army of judging Pharmacists to help her get it. So there.

I am thankful for these reminders of what is really important in life, as I’m just letting creepy people get the best of me lately. Cheers to tackling breast cancer like a super champ, and cheers to judgmental pharmacists and rude servers at so-so Eagan restaurants. The ugliness will all be worth it if the crystal meth derivative works for my Elliott, and if it doesn’t, maybe I’ll put the E man back on extended release Adderall and he can beat all these jerks up!

Peace out.