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Autism Parenting: A Day In The Life

Posted by David on June 10, 2012 in Autism, Life |

Being the parent of a child on the Autism spectrum is always very interesting. Of course being a parent of any child is interesting, but there are many details and nuances that come with autism that most of us would never think about – until we’re faced with trying to raise a child on the spectrum.

Stone strikes a pose in one of the local parks we frequent

And let me say this upfront: I know how lucky we are with both Stone and Ty in so many ways. They are both extremely happy, healthy, fun and funny boys who make me smile on a daily basis. But having said that, it occasionally hits me just how much *work* it is having to deal with some of the issues that come along with Stone’s Autism. And it’s not like it’s anything major – it’s really the toll of lots of little things that require extra attention that add up throughout a day.

To help provide some perspective, I thought it might help to just review some of the typical daily activities and provide a quick comparison between Stone and Ty.

Sleeping/Bedtime

This is a big one of course for all parents.

With Ty, we’re able to take him to bed, kiss him good night and leave him to sleep throughout the night. He typically falls asleep within 5 minutes and always sleeps throughout the night – usually until we have to wake him up for school at 7:30 on weekdays. On weekends he’ll typically sleep in on his own – today he woke up around 8:15.

With Stone, we take him to bed but he still gets upset if he knows we have left him in the room alone – so I typically wait in the room until I know he’s asleep and sneak out. This is actually an improvement. Until about 2 months ago he needed us to hold his hand or touch him before he’d fall asleep. He typically falls asleep within 10 minutes but always wakes up at some point in the night and starts to cry for us. This has required a trip to his room to pick him up and bring him back to our bed, where he spends the rest of the night. Thankfully he now sleeps through the night more times than not. But there are still times occasionally when he wakes up on his own at 2 or 3 am and can’t fall back asleep. This requires me to bring him downstairs to sit with him and have Renee relieve me around 5:30 so I can at least grab another hour or two of sleep.

Eating

Stone has always been a big eater – his energy level is insanely high so he is constantly on the move. It’s extremely rare to see him sit still in any one location for any length of time – so he is burning lots of calories all the time. This requires a system of delivering food to him on a consistent basis (ie lots of snacks). This is one reason why he had multiple cavities when we first took him to the dentist and Ty did not. The dentist said simply when kids are snacking constantly, its pretty much impossible to keep their teeth clean.

We made changes to Stone’s diet 3 years ago, removing all form of cow’s milk and cheese and trying to do gluten-free/casein-free as much as possible. Those who have attempted to make this conversion either for themselves or their families can attest to how challenging this can be at times. But overall, we do a pretty good job with Stone. But this still requires special planning/consideration with each meal. Stone also has a huge sweet tooth – he constantly craves sugar and foods that contain it (rice milk vanilla ice cream is his favorite).

Going to Parks

We spend a ton of time going to parks – and its certainly gotten easier dealing with Stone at parks than in the past. When he was younger, we’d have to keep a very careful eye on him and make sure he didn’t bolt one direction or another out of our view. Now he does a better job of staying relatively close but I always try to monitor him by sticking close by. He’s also gotten better about playing around other kids on playgrounds – sometimes climbing and playing on equipment (still loving the swing of course). But with the advent of Spring, Stone has rediscovered how much he loves to find and pick flowers (or tree branches). He likes to pick off each pedal (or leaf or pine needle) and sprinkle them on the ground. This requires a little extra supervision a times because I don’t want him wiping out a flower display from one of our favorite parks.

Going to parks that have water is a little easier (and predictable) because it’s guaranteed that Stone will want to throw rocks in the water – and eventually end up in it himself. We’ve finally gotten smart and have a bag constantly packed in our car that includes extra shorts, t-shirt and beach towel for such occasions.

As far as Ty goes, he’s always just happy playing on the equipment with other kids and especially showing off on the monkey bars. We also usually try to bring his bike so he can race around on it.

Hanging Out In Our Front Yard

We’re lucky to live on a street with other kids near the twins’ ages and great neighbors. Ty gets especially excited when he sees other kids playing outside as he loves riding his bike with them and finding other ways to play together. And even if other kids aren’t around, Ty has fun on his own riding his bike around if we’re trying to do projects in the yard (like today when I was cleaning out our SUV).

On the other hand, Stone doesn’t have the same interest (or ability) to ride a bike (or scooter). His interest in being in the frontyard is strictly in picking flowers and plants (see above). Unfortunately, his favorite targets tend to be our neighbors yards, so we are constantly trying to reign him back to our yard and telling him again (and again) not to pick flowers from other yards. This makes trying to accomplish any task (like mowing the lawn) automatically double in the amount of time required, because I’m constantly looking for and retrieving Stone (sometimes he’ll disappear around the corner in another neighbor’s yard to pick branches).

One of my goals this summer is to try to get Stone to ride a bike. We bought and installed a “co-pilot” bike accessory which allows him to ride as a tandem passenger (as well as pedal) with us on our bike and he really loves it. I think his balance is stronger now so I’ll be working with him more to try to encourage him to ride a bit this summer.

Hanging Out In the Backyard

This is obviously the easiest of activities since we have a fenced backyard that helps keep him contained. And he loves spending time outside – especially playing with Brodie. He used to have a phase that has since passed (we think) where he would throw things over the fence into our neighbor’s yard. We discovered golf clubs, balls and all kinds of toys in their yard last summer. Earlier this year he was also trying to do the same with Brodie’s poop. Yes, he enjoys playing with Brodie’s poop so I double my poop patrol efforts to make sure there are few bombs for him to deliberately step in or throw. One positive sign here though: today while on poop patrol, Stone went out of his way to show me where Brodie had left his mark, allowing me to clean it up. I consider this a positive sign.

Supplements/Vitamins

I have mentioned before that working with a local Naturopath, we have Stone on plethora of various supplements and vitamins. This includes B-12 shots that are given daily each morning, Omega Oil and various other powders that we deliver mixed together in vanilla frosting each night. The real challenge here is managing the supply of all the various supplements and vitamins – it seems that I’m constantly ordering or refilling one or another nearly every week.

Entertainment

Stone’s favorite form of entertainment continues to be Little Einstein videos. He has shown no interest in any other TV show or movie – even though we occasionally try to expose him to different titles. We don’t have any Little Einsteins videos on our DVR any longer, so we will allow him to watch clips on YouTube via his iPad. Interestingly, the clips he prefers are all foreign language clips now. We’re not sure why – if its just because he knows all the episodes so well after watching them thousands of times that he likes the variety, or what. But we’ve gotten used to hearing Russian, Spanish, Italian and Korean versions of Little Einsteins throughout the house.

I would love to see Stone show more interest in an actual movie someday. Even when he watches his YouTube clips he doesn’t watch them as a typical child would do. Instead, he likes to use the fast forward and reverse functions to constantly watch small clips or pieces over and over again – and rapidly flips through various clips.

Communication

This is really the crux of everything associated with Stone’s autism. It’s just really hard for him to speak (still). We’re seeing small signs of improvement over time but it has been very slow and gradual. Many of the words he tries to say are very difficult to understand (although we usually can figure out what he means). He speaks using one or two word commands typically, such as “iPad” or “ice cream” or “upstairs.” They typically have to do with something he wants or needs. But as I said, we’re seeing signs of change here too. A week or so ago I was outside playing with him and he opened a mailbox, pointed and said “empty.” This was good on so many levels – he was actually sharing an observation instead of requesting a need.

We have downloaded a couple of apps for the iPad that are supposed to provide assistance in communication for kids with autism and his school has been using one to help him make requests, etc. there. But unfortunately, we have not been as diligent at home in trying to get him to use the app and I feel horribly guilty about that. I think there is a part of me that wants to think that he’ll just continue to improve his communication enough over time that he eventually will never need to use a technology-driven device. But then there is the other part that looks at the reality of Stone’s limited┬ácapabilities┬áTODAY and wonder how much easier/better his life might be if we could invest more time and energy into helping him learn how to use these apps to communicated his needs (or observations with us).

Guilt

This is another big area for me when it comes to dealing with Stone. There are times when I feel that every free moment I have should be devoted to researching autism and looking for new/other ways to treat it and help Stone. I look at his age and feel like we’re racing against a developmental window of opportunity with him and wonder if maybe we shouldn’t be investing even more time and money into his various therapies (even if we can’t really afford it and aren’t even sure what’s really working). I also feel guilty when I get angry at him – which typically only happens now if he does something over and over again that he knows he shouldn’t be doing (like picking neighbors’ flowers or drawing on the table with ink markers). It’s very difficult because I know that Stone’s comprehension is *very* high – he listens extremely well and is capable of following my requests/instructions. So when he chooses to disobey something I request, I’m pretty convinced it is just that – a choice he makes – and is not tied directly to his autism and inability to understand/process something. He is a very smart boy and has learned that sometimes the best and easiest way to get attention is to do something naughty – but he’s always good about making sure he never does anything *too* bad.

So I have worked very hard to try to manage my anger with him better – knowing that it usually doesn’t do either of us any good if I do lose my cool. But I admit that I still have had a few moments when I did snap at him – and immediately felt terrible because of it. I think about the frustration he must have and face on a daily basis not being able to communicate as much or clearly as I’m sure he wants to – and he needs me to be his biggest advocate and supporter. I don’t want to do anything that will betray those feelings or the trust I feel he has in me.

Well this turned into a much longer post than I originally planned but hopefully I helped shed some new light on what it’s like dealing with Stone (and autism) on a daily basis.

Tomorrow my post will have a more positive and optimistic focus and tone as I’ll write about all of the different areas of progress I’ve seen in Stone the past 6-9 months.

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