Mealtime. "Let's Get Ready to Rummmmbbbuuuuulllll....!"

Autistic kids, at least those I have seen are very willful. As good at heart as they are, they really are self-driven by their appetites, interests, and passions. Their ability to discipline and restrain themselves is hampered as their ability to understand moral balances like "Right and wrong", "Healthy and Unhealthy", and especially "Safe and Unsafe" is quite limited. Fortunately for us, we have successfully instilled in our boys the concept of "Hot" especially around our gas stove and oven, without blisters or worse.
ER visit event potential aside, our boys have real trouble with "attending". For the uninitiated, that has nothing to do with arrival to an appointment. It really is more connected with the concept of "attention" where the child sits and stays put. It is also connected with paying attention to someone or something that is trying to gain your focus, but that is limited and varies depending on the stimulus.
Food, for example, you would think would be a very good stimulus to capture one's attention. Especially boys who, like any good voracious beast of the jungle, eat like it is their and everyone else's last meal. They also tend to eat like wild animals. I know some teenagers that eat entire boxes of crackers, down several sodas, and the belch signaling the momentary end of their food celebration at a time we normal people call "breakfast" Yes, this has happened and more than once!
"Nevermind. Put it back and get some cereal"
With my boys, it is a guessing game. There are some things that you know they prefer over others but even then their tastes evolve. One example from last night. I have been on a keto diet which largely has me eating a very different meal from what the rest of my family eats. One of my girls made a Hash-brown, scrambled egg, link sausage, and cheese casserole on the stovetop for the rest of them, (very tempting to me - I snitched some sausage) while I made a simple cabbage and sausage fry up with a little soy sauce. (Don't give me that face!) We served up a plate for Adam and I served up mine. The others had already eaten. Adam had just returned home from a Respite activity. He came over and looked at his, then looked at mine, then looked at his again. he then reached out a hand and grabbed a big handful of mine and stuffed it very indecently into his mouth. I goodnaturedly said "Hey!" and tickled him. He laughed and backed up a bit. I then asked one of my girls to get some ketchup for his to hopefully draw his interest to it. That helped, but I still retreated with my plate like a wounded lion and gulped it down in kind of a gluttonous self-preservation manner. It was a thing of beauty. *snort*. I knew he liked my cabbage fry up as he had shown a preference to it before. It is quite a guessing game from day to day what he will eat, though. The retreat of last resort is often cereal or a PB and J. It's sad, I know.
"Here, this is a spoon...Spoon...SPOOOOON...OW!"
I have written before about how messy they can be. Disregard for utensils is a challenge for any parent with young kids but usually by the time they are 8 or 9, using utensils is at least a starting point if not the default method of consumption. For Adam, though, a spoon is often too slow, or at least it seems to be. He will shovel it in as fast as he can go. Sometime he will abandon the spoon altogether and stuff it in by handfuls. Sometimes the spoon will go flying like ti had just insulted him.
"OK, take a bite and run three more laps. Honey, where is the seatbelt?"
Ok, that is said a little tongue and cheek. John often will sit through an entire meal, if he hasn't been overstimulated. Adam and Joshie will rarely stay put. Back when we had a working buckling booster seat, they both would just rock forward and then toddle around with the full chair and seat strapped to their backsides. Like a scene out of a sitcom, it slows them down a bit but they don't seem bothered by it at all. They are hyper, energetic and when not on the cusp of falling asleep, they prefer to move and keep moving. Usually, this then manifests as a relay race, where they will come by and stuff their mouths with food then run around a bit. We have tried various methods of getting them to sit and eat but many protests and tantrums have resulted. At times this involves a plate or a handful of food becoming airborne. Just check out our Dining room ceiling periodically. Grateful they are to eat and happy to take their plate to the sink or trash to drop it off. Not always the right one. They really do try but life is to be enjoyed and if that involves running laps while eating...hey, there is a party game in there somewhere!
Cherish the normal moments...well the almost normal moments. 
Mealtimes are not always like this. Sometimes they can be almost normal. There are rare occasions where I spot them sitting quietly at the table, chomping down on breakfast. Just for a little proof, I have a clip below from this morning with Jon and Adam feeding themselves, (yes sometimes it comes to some intervention). Don't mind our dog, Yeti. She is just dying of cold on the back porch. At least that is how she makes it sound. We let her in.

Tactile Sensitivity

Many autistic children have sensory issues on all the senses. Some are sensitive to bright light, loud sounds, heat, cold etc. It is interesting to note, however, that often sensory issue also manifests in the other direction such as a need for touch or pressure.
A photo below shows how my second boy, Adam often gets upset and one way of helping him cope and calm down is a good solid hug. On this occasion, daddy just left for work and he was upset because he couldn't go outside with him. Here is mother is consoling him.

This tactile need and sensitivity also manifest in other ways. Examples are playing with food, touching other people (invading personal space), playing with light-up or moving items, (not all are toys!) among others. Adam, pictured above, loves to spin tires and wheels and then feel the texture of the tires as it slows down. 

Various therapeutic devices help with this sensitivity. One I have seen often is a weighted vest. This is a vest with removable sandbags that when worn properly, give a perpetual squeeze and mass to the vest. This gives the sensation of being perpetually held and hugged, a comfort to those susceptible to touch. Weighted blankets can also give this sensation though they are much lighter and can often be substituted for multiple blankets to give that 'heavy' feel. 

Many other manifestations fo sensory sensitivity occur and can be explored as therapeutic options. Below is a link that describes them. (Not a sponsor of this blog. Just a good example of some of the sensory devices.) 

https://enablingdevices.com/product-category/sensory/

Autism...a genetic component?

It is not unheard of that autistic children have other complicating conditions. Despite not knowing the full origins of Autism, it is my belief that in our case, there is a strong genetic component to it. For this, I need to give a little background.

On my Mothers side, I have one cousin who is low functioning on the autism spectrum. He is one out of twenty-three cousins, (if I counted correctly.) On my dad's side, I only have one natural cousin about which I know nothing. My wife has five cousins on her mother's side and her father's side she has fourteen-ish cousins - twenty if you count my wife and her siblings. This "sector" of the family has a "high-incidence" of autism spectrum manifestations. One cousin, who is moderately functioning, (totally dependent but has some speech), then my wife's sister who is low functioning like my boys. Another sister has a low-functioning autistic son among 6 kids, and then there is us who have three of our eight who are low functioning. That is certainly much higher than the population average of ASD occurrence. Not knowing much about the children of the cousins to see how affected it is on that broader generation, this is still much higher than "normal".

That alone is not enough to do more than suggest a genetic component to ASD in our family. However, another condition is showing up as well.

Ocular Albinism is an X-linked genetic condition that affects the eyes. In women who have the genes for this, they are carriers and it can often be suggested in their lighter eye colorations. For boys, they either have it or they don't as they only have one X- chromosome. My father in law has this as well as having some autistic behaviors and so his boys are all free from it as they got the Y-chromosome from him. His girls are all automatic carriers. Each of my children, as well as her sister's, would be 50/50 among the boys at getting it or not and the girls would be 50/50 at being carriers. The condition is manifested as having a blonde fundus, a portion of the eye that usually carries a pigment. This pigment acts as a mirror and protects the tissue surrounding the eye from light damage. In a newborn, if a flashlight was shined into the eye through the temples and if the light was seen, then this condition exists. If no light is seen, they are likely OK. Our three autistic boys each manifest Ocular Albinism as well. This paired with their autism is what demonstrated the possible genetic component. My nephew whom I wrote of above, also has Ocular Albinism. I will write more about that condition in another post.

They each have their own personalities and they each have their own steeming behaviors, interests, typical ASD characteristics as well as some that don't manifest. They are people and should be treated accordingly. I love my boys and though they cause me an endless amount of work through their behaviors, I love them. They are my boys and nothing would take away my love.

See some related articles below about ASD and Ocular Albinism.

https://rarediseases.org/rare-diseases/ocular-albinism/

http://www.dusunenadamdergisi.org/ing/fArticledetails.aspx?MkID=945

https://www.cell.com/cell-reports/pdf/S2211-1247(16)31641-2.pdf

http://happyashleigh.blogspot.com/2012/05/ocular-albinism.html

Joshie. Breakfast and Cereal. Just not with milk...or in a bowl.

All of my boys are different with their food preferences. Even what we have been able to get them to eat, has been a long hard struggle. Autistic children and I presume adults have varying hypersensitivities when it comes to stimuli. Food and taste, as well as smells, are among these. One example is that Jon does not seem to care much for meat. We have been able to get him to eat some of them but not very often. Other protein sources such as beans don't seem to be any more appealing. As a result, we often have to resort to sweeter ones like Peanut butter. Vegetables are even less likely to appeal to him.
Adam however, seems to have taken to many different foods. I have seen him eat lettuce (from my dinner plate) like one would grab a potato chip and eat it. My keto smoothies often have frozen spinach or kale in them and he is all about having a cup of his own. His foods seem to have broader appeal to him and the ones that are the most appealing he eats with both hands, shoving a huge pile into his face like many would imagine a starving person would do.
Joshie however, still seems to exhibit some texture issues and cereal, though he likes it, as soon as milk makes it soggy, you could not get him to eat it under any circumstances. He also finds things like bowls to be a complication. As a result, his breakfast is often in a pile...on the table... in front of him. Yes, we have tried plates, but that just becomes a toy, or it becomes an experiment in shatter resistance, followed by maniacal laughter.
Here is a video of him eating this morning, after I finished recording this, I gave him a cup of milk which, I made the mistake of giving him too much (half cup) and after drinking the first inch, he dumped the rest on the floor and hucked the cup down the stairs. *sigh*.

Joshie is learning to sing!

Joshie, my 4-year-old low-functioning autistic son is learning to sing. We have been learning a few songs but he has had a couple of favorites. Here he is rehearsing in the car while we wait to go into school!