Autism from a mama who has been there. I am hoping to post every day this month. Please feel free to ask questions in the comments.

Belly-Button Barometer:

Besides being a triple score in Scattergories, it was also a critical tool in taking my son’s mental wellness temperature. It probably won’t be a belly-button, but with observation, you will find your child’s barometer.

I believe that putting his finger in his belly-button started as a simple coping mechanism, stimming. As a toddler is was cute, inoffensive, and initially harmless.
It didn’t take long to realize that I could monitor this activity and use it as a gauge. When my son was calm and at ease, no fingers. One finger, he was still doing pretty well. Two fingers, I would look for the triggers and try to mitigate or redirect. Three or more fingers and I would need to remove him from the situation immediately or face the music. And by music I mean, melt-down of epic proportions.

I can’t tell you how helpful this physical sign was to all of us. The older kids could even let me know how he was doing when I was engaged in other activities that took my attention elsewhere. It also helped me recognize triggers. When the fingers headed toward the belly-button, I could think back and ask myself, “what just happened that could have precipitated this stress response.”

As a warning, even innocent stimming can turn into self-harm when repeated too forcefully or too often.

Case in point, a diagnosis of thrush, an infection in the mouth, on a Friday, seemed like perfect timing to break him of his pacifier. There was nothing on the calendar; it would be a calm, quiet weekend. Well, it was not quiet at all that weekend.

I was waiting outside the BX (military department store) early Monday morning with my screaming toddler. I opened the package and popped that “plug” in his mouth before I even paid for it and about a dozen more. Then I headed to the Acute Care Clinic. Over the weekend, he had ulcerated his belly-button in his distress.

Breaking him of the pacifier wasn’t happening while his belly-button healed. We had to take drastic measures. We wrapped an ace bandage around his middle to keep his hands away from the gauze packing and give his body time to heal. A cup of bleach on the counter kept the pacifiers sterilized. The minute one left his mouth; it went into the cup. A sterile one was rinsed off and given. After he finished the medication for thrush, I purchased a dozen new pacifiers and threw away all the old ones. It took a few weeks for his belly-button to heal; he had a tough time leaving it alone. I rocked him to sleep many nights.

This event did lead to a decrease in his belly-button stimming but a more substantial reliance on his pacifier. I had to find a new barometer. The more forcefully he sucked on his plug, the more stressed he was. He also started to furrow his brows. Change is the only constant in life.

Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am going to try to post every day this month. Please feel free to ask questions in the comments.

California: To touch or not to touch?

I am going to tell you a scary story. One that should make your blood boil.

We were living in Vacaville, CA. My autistic son was in kindergarten. He had a lovely teacher, she was great with him and open to all the IEP and 504 modifications. He loved school.

One day I was on my way home from somewhere, probably the doctor’s office - someone was always at an appointment – and felt prompted to swing by the kids’ school. I saw an empty playground. And one lone child. Was that my son? It was my son! Alone!

I am ashamed to say that I lost it. But I think it is understandable. Hopefully, you will understand.

I parked, badly, and ran to the monkey bars. I grabbed my son, tucked him under my arm, and stormed into his classroom. I was informed that California had a rigorous “no touching the children at any time for any reason” policy. (I don’t know if things in California have changed since 1996, I hope that have.) I informed the school that I held a very strict “my son will not be attending until you can guarantee his safety” rule. After consulting my son’s rights booklet, remember the one I told you to memorize, I called the school, and within a few weeks, my son had a personal aide. You must be aware of and knowledgeable about the laws in whichever state you are living in.

Years later, we found ourselves back in California. This time my son was in Junior High. We had previously been in Texas, and part of his 504 accommodation was a “quiet place” he could go when he was overstimulated or stressed. The area that had been chosen was a section of the Behavioral Academic Classroom. California read that to mean that my son needed to be there all the time. Oh, the fights! There was no way that I was going to allow someone who didn’t even know my son to put him in danger of regressing and relapsing into behaviors that he had previously overcome. Oh, I just got passionate. I need to breathe.

No matter where you are, you have to work within the structure in place. You can work to change policies and practices. But, while that happens, work with what you have. Fight for your child. You are their most reliable and, sometimes, only advocate!
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Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am going to try to post every day this month. Please feel free to ask questions in the comments.

Age-appropriate versus expectations.

There are many different parts to your child. And your autistic child will be a different age in each area. This makes it pretty tricky to parent but, at the same time, once you know your child's developmental age, easier.

Socially, educationally, spiritually, physically are just a few of the different aspects you will have to determine. Your child may have memorized every dinosaur fossil found by man but still not know the name of his/her classmates.

Fortunately, there are plenty of developmental charts online now. Figuring your child's developmental age in all these categories may seem overwhelming. Still, once the work is done, you have a foundation for a better understanding of your child, what is appropriate, and give you an idea of what might come next. And you can share this information with family and educators.

When explaining to your other children (and other family members) why it appears that this child gets away with things they couldn't or isn't allowed to do. They must understand the distinction between biological age and developmental age. Then your child can have allies instead of enemies.

Physical growth doesn't happen at a set pace, and neither does developmental growth. There will be periods of stagnation (don't get discouraged) and giant leaps forward. And each area is going to develop differently. And just when you think you have it figured out ...

Knowing the developmental age is essential in knowing how to set up chores, restrictions, consequences, and teaching for continued growth. Take expectations and toss them in the trash. No one expects a toddler to mow the lawn, and developmental age isn't visible from the outside.
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Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am hoping to post every day this month. Please feel free to ask questions in the comments.

Ugh, puberty… Do we have to?

No, no, no. I did not want to do this. At all. I wasn’t ready. I didn’t know if I would ever be prepared. With my other kids, it was a short sit-down, Q & A. I knew this was going to be something else entirely.

What I didn’t know before because I didn’t need to know is that there are 5 stages of puberty. And I have to tell you that each one brought unique issues with my autistic son.

Stage 1: Brought a school lock-down and hospitalization at age 9. This resulted in a diagnosis of childhood bipolar disorder. This is not a result of autism, but autism did make things more challenging to diagnose.

Stage 2: A discussion about where the hair is supposed to grow. Do NOT pluck your pubic hair. It’s normal. It is supposed to grow there. Fortunately, I had an older son who was able to demonstrate some of these things when my husband was deployed  (which was often, and for long periods.)

Stage 3: The voice changes. And you must explain that teasing their autistic sibling is done at significant risk to their health and safety. My other children chose wisely.

Stage 4: Remember your pubic hair discussion? You get to repeat it for the armpits. Good times. Yes, I shave my armpits, but boys don’t. I even stopped shaving to prove that I grew armpit hair too.

Stage 5: Learning to shave, yikes. I actually tasked my older son with this one because there are different tools and techniques.

And somewhere between stages 3 and 5, you will have to deal with the emotional turmoil of hormones. Hormones will rage, your child will rage. You will rage. For us, this resulted in our son participating in an outpatient, part educational/part therapy school.

Our son was later diagnosed with an adrenaline condition that made all of this hormone drama tremendously difficult. I was fortunate to be led to a doctor online who was one of the foremost researchers of this condition, and his help was life-saving. He and the pediatrician worked together to get our son through this frustrating and dangerous time. It was during these scary months that our son was on Home Hospital. A teacher would visit three times a week with work packets from his HS teachers. Trust me, this was the safest option for everyone.

To all the families going through puberty with their autistic child, I pray for you. Remember, you are a team. Reach out, take time for yourself, and breathe. This, too, shall pass.
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Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am hoping to post every day this month. Please feel free to ask questions in the comments.

Rituals: They can get out of control!

I had a request for some examples of ritualist behavior. We all have rituals. I, personally, have to wash in a specific order in the shower. If I get distracted, I could walk out of the shower with shampoo still in my hair. It has happened before. Maybe before you leave the house, you check your cell phone, pat your wallet and grab your keys. Rituals, calm us, reassure us. They, in and of themselves, are harmless.

Unless they get out of control. I am going to talk about my son’s bedtime ritual. It started simple enough. A story, a kiss, a pacifier, and his sippy cup. Then he added that his pajamas had to be zipped low enough for him to be able to touch his belly button. (Harmless [at this point] stimming, also a gauge of his anxiety. The more fingers, the more stressed he was.) A special blanket had to be rolled up and looped around the top of his head. Soon a cloth doll and a panda were added. If anything was missed or given out of order, a significant melt-down would ensue. This was particularly difficult for our babysitters.

It was after a check-in phone call that we realized something had to change. When we called the babysitter was panicked, our son would not stop crying, and she was at her wit’s end. In reviewing the list we’d given her, we were shocked and ashamed to realize we’d left off the belly-button part. As soon as she unzipped his footie pajamas, he put his finger in his belly-button and fell immediately asleep. That was torture for both him and the babysitter.

I set to work. First, I had to stop the addition of any new items to the ritual. This was hard. Our son was so young and didn’t communicate at all. We all want to please our children, to make them happy. Unfortunately, this isn’t always possible, so get rid of that guilt right now. A few months after successfully stopping any new attachments, I began the heart-wrenching process of eliminating the non-essentials. How did I know what things were non-essential? Guesswork, gut work, and listening to my child’s cries.

First, the footie pajamas changed to tops and bottoms. He could still get to his belly button, and he wore socks to keep his feet warm. Next, the cloth doll; gone. After that, the blanket moved from the top of this head to the foot of the bed. If it was a cold night, I’d spread it over him. It was there, but not looped around the top of his head. Eventually, he started removing items and processes on his own. I just needed to help him realize that he didn’t need these things.

He let me know when it was time to end things. That last good night kiss broke my heart.
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Celebrate the small stuff. Be flexible. Laugh.

Autism from a mama who has been there. I am going to try to post every day this month. Please feel free to ask questions in the comments.

Worship:

Sabbath worship. Anyone with kids knows it is a challenge. Add a special need/disability to the mix, and you wonder, is it worth it? YES! I learned a lot from reading about Temple Grandin. Her mother forced, yes forced, her to learn how to behave in society, and if you want your child to grow, you will too.

Sitting still, being quiet (if you haven't reached reverence yet that is okay), and staying dressed. Rewards go along way. Quiet entertainment that is reserved for Sunday makes it a special treat.

Handing your child the Sacrament, when they are young, prevents disaster.

Talk to your child's teachers, give them tips, and educate them on your child's triggers. Ask the teachers to avoid perfumes/colognes and dangly, shiny jewelry in class. If possible, have your child meet the teachers and explore the room before Sunday. Be prepared to attend class with your child, but resist the urge to teach. You are the parent, but in this case, you are also a student.

And as with all children, you will need to adjust as your child develops and matures.

Wrap-around sunglasses and earplugs ARE appropriate if your child needs them. You can help the teachers in how best to explain this to the rest of the class.

 Zipper ties and loafers are sanity savers in the early years.

 Celebrate the small stuff. Be flexible. Laugh.