this one time, at band camp...

I first learned of my high school marching band's reunion back in June. Part of me wanted to go, the other part of me kind of had that deer in the headlights look when I even merely thought about it. I was quiet in high school, and didn't think much of myself with my glasses and braces. I played French Horn and mellophone pretty well, I think, since our band director kept me around for 4 years 🤷🏼‍♀️ So I went back and forth for several weeks before I decided to attend. 

Fast forward to last Thursday: I headed down to my hometown of Winchester, Virginia, to spend some time with my parents, and to attend my high school marching band's reunion. It ended up being such a fun weekend to reconnect (in person!) with the people with whom I spent the majority of my time in high school. 

The event was held at our sleepaway band camp in Hedgesville, WV, at Camp Frame (a 4-H camp). As I pulled up to the camp and saw the Camp Frame sign, I got a lump in my throat, and so many feelings and memories of that camp came rushing back. I got out of my car, threw some sunscreen on, and went inside the dining hall with Allan and Sara. There, I was scream-hugged by our band Aunt June, which confirmed I was definitely in the right place. 

A group of us checked out the cabins... I swear, if those walls could talk, I'm sure they would have some stories to tell! As it was, the stories told by the "boys" were hilarious. Why do the boys always have the best stories?? 

The event itself went off beautifully. The planners really spared no detail.... other than the print of the name tags. Nothing says we're getting older like needing enlarged print! The food was great, and the desserts.. yummy (especially that PB fudge... if whoever made it would like to share the recipe with me, I would love it!). It was fun to check out the campground... not a whole lot had changed. 

It was so much fun to catch up with friends. But the best part of the day was honoring our director, Dan Schoemmell. Some people shared their memories of band camp, competitions, and practices, and Mr. Schoemmell was at the center of those stories. He told us about the bogus cabin inspections.... how the worst cabin would have kitchen duty. He had us kids petrified of them, but in fact, they were designed to take our focus off of the fact that we were up early, to bed late, and marched around in blistering heat and humidity. You know what? It worked! A few years later I figured out that each cabin was going to have kitchen duty, regardless of the state of the cabins.

Mr. Schoemmell was an exceptional leader. He commanded respect, not only for himself, but also for our band parents and for one another... and most important... for yourself. He had demanding expectations for his students: know your material, be early (because to be on time is to be late), be prepared to work hard in class, at band camp, and at home when you practiced your music. You were expected to conduct yourself in a professional manner when at school, or out and about, because wherever you went either wearing your uniform or band apparel, you represented the James Wood Marching Band. 

It was clear that Mr. Schoemmell had an impact on the lives of so many. The reunion was only a small gesture of the gratitude so many of us feel towards him. I'm thankful that I could go... it was a reminder of the lessons that remain with me still today.

#isurvivedbandcamp

#campframe

#jameswoodmarchingband

#colonels 

#thisonetimeatbandcamp

it takes a village

"It takes a village" has not ever rung truer than it did last week.  

Lulu went to prom on Friday. A lot of work by a lot of people went into making Lulu the prettiest princess ever! First, our friend Lucretia sent home a beautiful selection of dresses. 👗 It took a bit to get Lulu to try on the dresses, and just when we thought she had picked one... well, I'll save that for further along. 

The morning of prom came, and Lulu spent the day getting her hair, nails, and makeup done at school. Her teacher said that she was so good during the process, and everyone just oohed and ahhed over her.  Her school has a cosmotology program, and those students went above and beyond!!

When she got home, Lulu was a little on the obstinate side, and did not want to wear the dress she chose. We brought along the two top dress choices, and headed to her friend Bella's house, because her mom, Jasmine, offered to fix her makeup. Jasmine sure worked her autism mom magic, because Lulu not only permitted the application of more makeup, but also got Lulu into her dress. For fun, Bella put on the other dress that Lulu had originally picked. (Unfortunately Bella couldn't go because you have to be 16, but next year they can go together 💕💕).💅💄

After we arrived at the DoubleTree Hotel, John and I could walk her only in to the lobby, because parents weren't allowed in until the very end.  Initially I was really sad about that, because one of us has accompanied her to everything her whole life.  But then I realized that Lulu is a typical teenager inside, and doesn't need her parents with her for every event... she more than deserves a night to be as typical as she possibly can be.  Don't worry, there were plenty of teachers and paraprofessionals there to support her, including her 1-to-1 aide. 

I really thought that Lulu would be ready to go after an hour.  I am SO happy to report that I was completely WRONG!!

Lulu had an absolute blast!! The room was beautiful, the DJ was great, LULU DANCED (her teacher sent me photos and video)!! And everyone seemed to have a great time!!

***On the way out, I asked Lulu if she needed to go to the bathroom, and she said yes.  As we neared the bathroom, she suddenly took off running.  I sprinted after her as she ran to the other end of the building into the other ballroom where Windsor was having their prom. She left, but not willingly 🤣

Thank you BT BOCES!! So happy that Lulu is part of this amazing program!! ❤️❤️❤️

one crazy ride

This is the crazy ride we're currently on...almost to a T.

This post is about real life with Lulu. It's accurate and it's raw. I don't write this way often at all, because who wants to dwell on the negative? In no way does this writing negate all of the wonderful things that Lulu does or says, or any of the tremendous progress that she has made. She is an amazing girl who is so loved. 

Lulu is getting bigger and stronger on the daily. And the behaviors are ramping up to all new highs. My house is tossed on a regular basis. She's busted through my bedroom doorframe, and has destroyed many pieces of furniture in a variety of ways, including bouncing with full force and having accidents on them. She sneaks food, and becomes really aggressive if you try to stop her. Lulu's sleep patterns are wacky at best. She has hurt Annie, John and me on many occasions. She has pretty gross bathroom habits. And she has severe OCD that medication doesn't seem to touch, and instead seems to make worse. 

In the very foreseeable future, Annie will leave for college in the fall. John and I will take care of Lulu, each on a rotating basis. And then what? The outlook is scary for me personally.  

The entire process is seriously heartbreakingly flawed. Questions are asked of us: Have you tried respite? Have you tried getting comm hab? Periodically Lu does stay at the respite house for a couple of days at a time. But there had really been no in-home respite for quite some time. And the same thing with Comm Hab. The fact is, there is a huge staffing crisis in the state of NY, and the people with disabilities...and their families...seem to be suffering the most. 

Have you talked with the school about placing her at a residential school? Interpretation: let's kick it to the school so the school district will pay for it. This is a no go, because she does well at school. There are a classroom of adults who can support her if she has a challenging time. But those supports are not in my home. 

Have you taken her to the psychiatric ER (known as CPEP here in my town)? I've taken individuals there before, and I assure you, it's really no place for a child or adult who cannot comprehend the full scope of what's happening. It's a scary place. And it's pointless for people like Lulu. 

We've been told to go to the walk in, or to the hospital, or to CPEP whenever anyone is hurt, just to enhance the paper trail. But how can I take into account for Covid when I have two pretty severe autoimmune disorders, and several less severe ones? How do you have someone willingly go to the hospital because they are bruised, but not much more than that... all to have a paper trail?

I've been my little girl's champion from the start, and the system has done well by my girl thus far. And I am so incredibly grateful for that. But when we really need it the most, the doors are slammed shut and barricaded tight. 

I'm told that they don't place children. I beg to differ. I've put 4 minor children living in residential placements onto school busses. Then I'm told to consider the very program that the girl in the article was likely sent to. That girl came back after a year, and the cycle started back up. And I hold no hope that it would be a different outcome with my child. 

Why can't letters from my doctor, my correspondence, and the pages and pages of documentation from my daughter's Care Manager suffice? Why do I have look out of state for placement? Why are the residential placements in NYS so paltry? Why do they not care about the safety and wellbeing of my child?

WHY IS THIS SYSTEM SO FLAWED? 

The decision to have your child move to residential placement is not anything that one comes to lightly. It's the last resort. It's the thing that makes you feel like the most inadequate parent...like you've failed. Intellectually I know this is not true. But man, it sure messes with your heart and your mind.

https://dnyuz.com/2022/06/01/sabrinas-parents-love-her-but-the-meltdowns-are-too-much/

Celiac... Because Autism Isn't As Much Fun Without That!!

Thoughts During Autism Awareness Month.

There is growing research that indicates a link between autism and gastrointestinal issues. In fact, the current research estimates that children with autism are four times more likely to suffer with GI problems. There are additional studies in the works that are investigating the brain-gut connection in children with autism, and I'm excited to read about them.

When children are diagnosed, some people automatically pursue a gluten-free/casein-free diet (casein is a protein found in milk and cheese) in the hopes that it will cure the autism. I never bought into that train of thought. In fact, I wanted nothing to do with it, and fought it with every fiber of my being.

But life is certainly not fair, and we ended up discovering that Lulu has celiac disease. So she went on a gluten-free diet. In my opinion, it did relatively little to help her autism symptoms improve. She had a burst of language shortly after we began the diet, but then that leveled out.  

She has now been gluten-free for nearly 13 years. Lulu has made significant progress in that time, but I do not believe for one minute that it has anything to do with the diet.

I am not knocking anyone's belief in the diets. You do what you have to do to make your life a little easier. And who am I to say that they are bogus across the board? Autism is a spectrum disorder....what one thing doesn't work for one person, may actually work for another. And I hope it does!

What? Me Finicky?

Thoughts During Autism Acceptance Month.

I often think about how many people on the autism spectrum are exceptionally finicky eaters. The Lu is no exception. 

Over the years, her teachers, aides, and her behavioral therapist have worked with Lulu to get her to try different things. Even Annie would model and encourage the eating of new foods to show Lulu that something was yummy or wasn't too hot. That would only work occasionally, and usually only in those situations (just at school or just during therapy). 

Lately, though, she has been branching out and trying new (and sometimes forgotten) foods and textures. Lulu will now eat pizza, chicken, ham, sweet potatoes, and scrambled eggs, and even brussels sprouts, among other things. Even better yet, she eats them at school, at home or out at restaurants.   

These may seem like trivial things, but they're huge to me. Crossover of skills from situation to situation is difficult for many on the spectrum, and I consider every new food tried to be a major breakthrough! Go Lulu!

Lu-ese

Thoughts During Autism Awareness Month. 

“Lu-ese.” It’s the language of Lulu. She has her own way of saying words, and many times it’s quite difficult to understand what she’s saying. It becomes frustrating for both her and for anyone who is trying to translate what she’s saying.

Many years ago, Lulu came to me saying “obacor.” She asked me for it over and over. She smiled so sweetly and said it again, as if she were really trying to be patient with my ignorance. When that didn’t work, she asked my mom for it. Then she asked Annie for it. No one could figure out what she wanted. After a period of time that seemed like an eternity, Lulu ran to the other room, grabbed the huge bowl that said “popcorn” on it, brought it back to me, and said “obacor.” Talk about an “a-ha” moment! Way to use adaptive communication skills!

At least once a week Lulu comes up with a new word or phrase that must be deciphered. Sometimes I can figure it out, other times it remains a mystery. If it’s completely unintelligible, even with a lot of detective work, meltdowns happen. Once I figure it out, though, we work on her articulation with her so that the next person won't have to go through that! Lulu has figured out that if she can ask for things, she will likely get them, so she does actually try to sound out words.   

Lulu works on mastering the English language by watching certain videos on YouTube or on the DVD player, typically watching short segments over and over (again, testing the patience of saints for those who have to listen to it) until she has it down. Sometimes she’s working on a song. Her current go-to video? Anything Disney Princess. I have to say, she’s actually very good!!

The number one frustration that I have with autism is communication. While Lulu is able to let me know what it is that she wants, she is unable to tell me how she is feeling and why she is feeling it. Sometimes she bursts into tears for no apparent reason. I don’t know if she is sad. I don't know if she is not feeling well. I don’t know if she’s lonely. I don’t know if she’s confused. She is effectively nonverbal. It can heartbreaking. And I know that many other parents of children on the spectrum feel the same way. And that is why it is so important to have patience.

Sensory Processing Order

Thoughts During Autism Awareness Month.

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion. (Source: Psychology Today). 

Anyone can have sensory issues. I do. I hate, hate, hate when my socks get wet. If one drop of water gets on them, I peel them off as fast as I can. I would rather go barefoot than to deal with that torture.  And don't get me started on certain food textures...

People with autism often have sensory processing disorder. Lulu has some sensory issues. She likes to crash into things (pillows, couches, etc.), doesn't like certain noises (like my singing - everyone's a critic!), has a limited repertoire of foods that she will eat (though I will say that it is improving!!), will only wear stretchy pants (she hates denim)...the list goes on. She has benefitted from a weighted vest at school, and sometimes uses a weighted blanket at home.

After her autism diagnosis, it was decided that the formal living room would become a sensory room, with the help of my parents and brother. We had a ball pit, trampoline, sensory table, crash pad, and hung a 360 degree hook from the ceiling that we could hang a swing (we had four different swings that we can switch around...a platform swing, a teardrop swing from Ikea, a horse swing and an adult version of an infant-style swing). There were also many sensory toys and educational games. Both girls loved it, and played in there often. When Lulu would be in her "climb everything" mode, it sometimes helped to redirect her to the trampoline or the swing. It was a great room to have on rainy and cold days!

Annie liked it in there too...she had a reading nook and an art corner, so some days I would only see her when she surfaced for food. But she also went in there to hang with Lulu. They seemed to have a great time in there.

As they got bigger, and Lulu's needs changed, we would give away things that were no longer appropriate for Lulu. Now she’ll hang out on the sofa with her tablet and headband headphones (when they aren't broken).

Obviously one does not need to create a sensory room for their autistic child. But having some sensory toys or other items available, as well as access to a swing or weighted blanket, could go a long way to helping an autistic child (or anyone with SPD) calm down and regroup.