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.

The Club

Thoughts During Autism Acceptance Month. 

This speaks to me today, though I'd change "son" to "child."

It doesn't matter who you are, every parent who has with a child with disabilities maneuvers the intricacies of this world with the help of someone who has also gone through it. The camaraderie is amazing... it's this like this exclusive club that you never wanted to be a member of, but now that you're here, you don't want to live without it. 

Team Lulu

Thoughts During Autism Acceptance Month.

Today I am thinking about the amazing team of people who have worked, or currently work, with Lulu. It is incredible to me that so many people have such an impact on Lulu, and that without that team, she would not be where she is today. 

When Lulu was first diagnosed, I was completely overwhelmed at the mere thought of having so many people work with her, and having to rely on them so heavily to help me navigate through the special needs world. But I'm glad that I insisted that she get evaluated when I did, because she was able to have Early Intervention therapies. And I'm glad that early on I asked the hard questions, like "Is Lulu showing red flags for autism?" because that allowed her to have an even earlier diagnosis, which led to more extensive therapies. 

Today I thank the amazing teachers, aides, therapists & community workers that have worked with Lulu over the years. From the time she was diagnosed at the age of two, she has had a LOT of therapies and people in her life, and I don't think that she could have made all of the tremendous progress without a single one of those people. Each person has worked so hard to help Laurie come along, to include Annie where appropriate so that she can be a great role model for Lulu, has helped me to understand the various ways to help Lulu progress, and has cheered her on (sometimes even sending me photos during the school day)!! 

So...THANK YOU to all of TEAM LULU!! Her team grows constantly, and we are all so lucky to know you. ❤️

A little medication cocktail, anyone?

Thoughts During Autism Acceptance Month.  

Today I'm thinking about how so many people on the autism spectrum are medicated for various reasons.  We debated long and hard about medicating Lulu...we knew it wasn't going to "cure" her autism, but maybe it could help the symptoms?  It was a very difficult decision, but in the end, the reason we decided to do so was because we thought that she was "getting in the way of herself."  What I mean by that is I thought her obsessions, behaviors and perseverations were blocking the progress that we thought she could be making if given the chance.  

We tried a couple of different medications before we settled on Risperdal.  This is a medication that is commonly given to people with autism to help reduce behavioral symptoms.  It did actually help Lulu.  She began making a lot of progress.  She learned how to swim.  She began following directions.  She was able to write her name and numbers.  Her aggression toned down a bit.  It was pretty great!  

However, there was a BIG downside to that med.  Lulu put on a tremendous amount of weight, and though we've tried to limit what she eats, her metabolism has changed, and she keeps packing it on.  She was put on another medication that is supposed to help as an appetite suppressant, but it didn't do much, other than make her cry... and she's not a cryer.  So we struggled with the pros and cons of that medication, and the pros outweighed the cons (no pun intended!).  

After awhile, the Risperdal stopped working, and she went without anything for a small stretch. But puberty hit, and we were off and running again. Along with the aggression, her sleep cycles were way out of whack. And when she is awake, you know what that means...I am also very much awake. There were weeks when I got 12-15 hours of sleep in a 7-day stretch. 

So new medications were explored.  Her psychiatrist tried her on a few other meds before landing on guanficine (Intuniv). He also gave her some meds to help with sleeping: Trazodone and Geodon, as well as melatonin. And all of that worked pretty well, until...

Next up! Obsessive-Compulsive Disorder! Lulu has recently had some really bad bouts with OCD. She gets something in her head and she asks for it incessantly. If you will, try to imagine what is happening in my house right now since this week's "freak-of-nature" snowstorm... our power is back as of yesterday, but the internet is not. 🥴  She is not dealing with that very well.  (Luckily for her dad, he can use his Hotspot to give her internet access, but I do not have that capability. I'm just gonna hope that Spectrum does right by me tomorrow 🤣). Her psychiatrist suggested using CBD gummies, and they do work to tamp down the incessant requests for unavailable items. And sometimes when it's really bad, and she's literally being aggressive with us, or is flipping furniture and tossing the whole house (sometimes breaking things like doors) looking for something, she will have an Ativan. I can't imagine being so out of sorts that I would need to be medicated like that. What must she feel like in her skin? 

Another extremely frustrating OCD manifestation is how she gets "stuck" and won't move.  Getting her on or off the bus daily is always an adventure. One day when her dad brought her home, she would NOT get out of the car for more than 90 minutes.  The door was open, it was really cold, and still... nothing.  90 minutes in the cold... that's a big NOPE from me!

So we talked about it with her psychiatrist, and we got her moved from guanficine to Prozac, because apparently SSRIs are a treatment for OCD. This has helped a little bit, but it's still a long road to travel. And it's not really helping the aggression. 

I'm hoping that they'll come out with something to combat the severe side effects of medications.  And even more so, I'm hoping that one day she'll be able to control her behaviors without the use of medication.  But until then, we'll continue to support her as she needs it.