There are individuals who think regressive Autism isn’t really a thing- that there must have been early signs and missed social milestones that parents failed to notice. As the parent of a child who has regressive Autism, I own a mountain of pictures and even some video that scream out just how real this has been for us.

Eye contact, smiles, coos, age appropriate play…all those things happened on time prior to his first birthday. Looking at pictures of my son from before the symptoms of Autism started manifesting is almost like looking at another child. However he looks and acts though, always he is treasured here.

Our geneticist told me that often times when you have a kiddo with a genetic disorder where a protein necessary for normal brain or neurological development isn’t being produced in the correct amounts, very early milestones look mostly normal until that child comes to the point were continued development depends on having enough of that protein. And then, things start to go off track. Looking back we believe this is very much what we saw with Tony as a result of his Sotos (diagnosed via genetic testing when he was 3), and Autism frequently occurs with this Syndrome.

At the time this picture was taken, the big show in town had been what was going on with his kidneys. Most of his milestones were being met, we were only starting to have concerns at this point about pulling to stand and crawling (which didn’t end up happening until 19 and 22 months, respectively). He was showing signs of tactile defensiveness and sensitivity to certain food textures, and he had horrible struggles with constipation, but probably the only thing from the picture above that is really sticking out to you (other than how incredibly cute our kiddos are) is the helmet.

For Tony, when you would try to put him on his stomach for tummy time, he’d burst into ear splitting screams. I asked one of the urologists connected with his case about this, and he said that the fluid on his kidneys increased the pressure on them, and being on his tummy would be painful for him. We were told to try and encourage tummy time, but as I told our doctors, there was no way I was leaving him on his tummy screaming in pain if it was clearly hurting him. I could tell before the test results came back showing the fluid was gone, because he started to again be willing to spend time on his stomach.

Even in infancy, Tony had opinions of his own…it didn’t matter how I positioned him on his side or turned his head, he always got his head mostly flat on the back, tilted slightly to one side. He had from day one shown signs of Torticollus, meaning his neck muscles were contracted so that he had a limited range of movement and keeping his head to the shortened side felt most comfortable for him. Generally this is treated with a series of exercises designed to lengthen the neck muscles, and was mostly resolved in the first few months, but there was still a slight unevenness in the sides of his head we were unable to change with positioning, and he still remained firmly determined to readjust his head flat even in sleep. So, we went through the process of having a plagiocephaly helmet approved by our insurance.

When we showed up for Tony’s head shape scan at Cranial Technologies, the technician commented on the protruding areas on the front of his forehead and asked if those had appeared over time as possible distortion from the flattening in the back. I told her that he had always had them. She said “No problem! We can shape the helmet to take care of those also…” and just like that what would have been one of the easier to recognize facial and diagnostic features of Sotos got gradually erased over two rounds of helmets.

We were told when he was fitted that Tony could only be out of his helmet for one hour a day, and that we had to watch carefully for any red marks that didn’t fade during that time as these could turn into pressure sores if the helmet wasn’t adjusted quickly. We were also assured that we would probably not experience many unplanned trips to their office because at the rate most babies grow, the typical schedule for adjustments of every 3 weeks was more then adequate to prevent this. I thought this was good, because we live an hour away from their office. Far too often though I was down there multiple days a week because Tony’s head was growing like crazy. This is another one of those things that made much more sense to me after our little man was diagnosed with Sotos.

The day Tony was fitted for his first helmet we were given an additional set of instructions and told to take them very seriously. Tony already had a thick head of hair and a tendency to overheat, and we were heading toward the fire kissed summer months here. His technician told us it was very important that Tony be kept in a diaper as much as possible once the temperatures rose to prevent overheating (the helmet is thick and holds in significant amounts of body heat) and that we start using ice blocks on his car seat. I asked if shaving his head would help and was discouraged from doing that because this would cause more rashes as his hair grew inside the helmet.

For my birthday shortly after his fitting, I decided what would make me most happy was to see my kiddos enjoying themselves, and Hannah loved a certain local children’s museum. Tony I knew was going to be mostly carried around by Andy or I and would probably be just as comfortable doing so there as anywhere else. I had begun encouraging him to try and support his weight and attempt to toddle while holding my hands. He still couldn’t push to stand, or crawl, but he enjoyed assisted toddling.

We were checked in by staff without incident, so when the first employee approached me about Tony being in his diaper about 15 minutes later, I naively thought that a polite explanation of his medical situation and the advice from Cranial Tech would resolve the matter quickly. She informed me with an expression that I can only describe as quite disbelieving that her granddaughter had needed a helmet and never been given the same advice.

Now, if stereotyping really were any sort of accurate indicator, honestly I probably should have been born with the most glorious Titian (think magma colored) tresses you have ever seen, crackling and dripping with hues of smoldering coppers and bronzes. I do try really hard not to be that person on a regular basis, but sometimes the grump just wins out and probably the quickest way to encounter my inner red head is to imply I have been lying when I have not been, so my next step was to more firmly request a manager. This gentleman also implied disbelief, told me I could go buy clothes in their gift shop, and indicated that a layer of fabric was necessary for babies in case of a diaper leak to prevent anything from coming in contact with museum surfaces.

Those of you who have children are no doubt snickering with me. For those of you who don’t, let me just say that should a baby’s diaper leak, a thin layer of fabric will do nothing to keep the urine or even poo if it’s runnier (and for babies it often is) from getting onto other surfaces. Andy asked to see a copy of their policy in writing, and was told it was an unwritten rule. I will also add there were no dress policy signs at the entrance either. I’m not saying any of the rest of this is what you should do, but it is what happened. I calmly pointed out the logical inconsistencies in his statements, mentioned exactly how inappropriate I thought his suggestion to buy clothes from their gift shop was when I had explained Tony’s medical condition and the advice of his provider, and said that if they failed to allow Tony to stay as he was we would certainly be canceling our membership. You just can’t trust stereotypes…you’ve all seen my natural hair color and not even a hint of lava is in it.

I’ll skip you through the rest of the story (the only remaining juicy bit anyways is that I mailed them back the ripped up membership card after they subsequently sent me a letter asking for a donation…again, describing not endorsing). They stood their ground- and I did too. Recently Hannah, Whitney, and I were talking about this incident and Hannah said, “Oh yeah. We haven’t been there in years.” Nope. Once my inner red head has taken a stand, she is totally willing to defend that hill, so it’s probably a good thing I rarely reach that level of umbrage. If I am apologized to and an adequate effort is made to accommodate us, no matter what happened prior, I am usually pretty happy to stand down. For me, this is not a matter of failing to forgive, because I am always willing to do that, but rather I prefer to spend our money with businesses who make more inclusive efforts to accommodate individuals with medical needs.

Alright, why are we talking about a wannabe volcano and membership confetti?

We are headed into summer here in our scorched earth furnace. While certainly the excuse that a layer of clothes would prevent a leak is just that (an excuse), the reality is their unwritten policy probably had a root in keeping other customers comfortable with what they were seeing. Attitudes businesses adopt often start with their customers. If you see a baby in a diaper out in public, especially if they are wearing a helmet, there may be a medical reason for it and my hope is that we would all cut them some slack…both about the diaper and the need for a helmet.

I encourage keeping conversation about the helmet neutral. Every time someone recommended something to us that they assured us would have prevented the need for Tony’s helmet if only we had just done this with him, it was something we had been doing. Those encounters usually left us feeling judged, and even after I educated people about Tony’s circumstances and things like his fontanel being smack on the back of his head and not the top, which we were told is what made him naturally gravitate to that position, I have to be honest and say that while I know people generally meant well, those conversations felt far from supportive and I spent a lot of time trying to keep kernels of hurt from sprouting in my heart or talking my inner Titian flame thrower into taking some deep breaths.