Sam’s World ~ What We Do

There is almost as much mystery surrounding treatments for autism as there are about it’s causes. People tend to have very strong feelings about their chosen methods and lines get drawn in the sand pretty fast on this topic.

There are a gazillion different options out there and we learned a few things in the beginning that helped settle our questions and what to do and I am happy to share them with you. But please keep in mind that I am sharing our experience and by no means am I saying this is how everyone should treat autism. It’s what worked for us and I think what we did/do may be helpful for others to consider but I also know that we rejected some things through out the process over the years and that was a good thing. Each case of autism is unique to the child so there is no one size fits all program. However, there are a couple of things that I believe every autistic child can benefit from and I will strongly recommend those treatments. I’ll share several different things in no particular order that we’ve found to be very helpful and even life changing for Sam.

One of the best things Sam has going for him is his four sisters. He’s had no choice but to be part of a group and they’ve made him interact and be a part of life. So, my first piece of advice…go have more babies 🙂 Just kidding. Sort of. But seriously, I cannot stress how vital it is for an autistic child to be around people. I met a woman once that shared how her two boys shared a room but when they moved to a bigger house and they each had their own room the autism became more pronounced for her son. With his own room it was easy for him to slip away inside his head; he wasn’t forced to interact with his brother anymore. Community is vital, not just for the autistic child but the family as well. Now, this certainly has to be done with wisdom since it can also be used to their detriment. Groups can be overwhelming and it’s easy to be overstimulated. However, it can also be a huge help when used wisely and with prudence. There is no greater place than a safe and loving community for a child with autism to learn and practice social graces. It also can relieve a lot of the burden for the family to know that there is a safe and loving place for their autistic child to be that enables him to do this. I’ve no idea where we’d be without our church family or school community. Sam is well loved and accepted in these places and it’s not just that his awkwardness is tolerated. Surely grace and understanding are needed but that does not mean ignored. He is encouraged to be a part of these groups of people and that means his behavior is corrected when needed and directed to what is appropriate. These communities help us shape and form him. I will also point out that our extended families take much delight in our son and eagerly look for ways to engage him.

It can be extremely difficult as a parent to put yourself, your family, and that precious quirky kid out there. It’s sometimes easier to shield and protect your family from judgement and well meaning but completely unhelpful advice by carving out a nice safe place to hide. In the long run though it’s not very helpful. Your child misses out on opportunities to grow and develop, other siblings may resent the limits placed upon them or they simply separate themselves from the autistic child, and you end up exhausted and overwhelmed from trying to be all of it by yourself. Again, be wise but find a community and don’t be afraid to be part of it. One last word on this…while it may be tempting to find and connect only with others in the same special needs boat, don’t. There’s more to life than autism so live like it.

The second thing that I believe is very helpful to have in place is your medical help. If your pediatrician doesn’t listen to you, your thoughts and opinions and insight, find another one. The same goes for any therapist or teacher or anyone who is part of developing treatment plans for your child. These people can be a treasure trove of information but they are an expert on a subject. You are an expert on your child. No matter how much knowledge they have, no matter how much training in the newest treatments they have, they do not know your child the way that you do. We had an occupational therapist tell us that we should not even worry about trying to teach Sam to write (small motor control is an issue for kids on the spectrum) but the thing was he wanted to learn how to write his name. So we totally ignored her advice and started working with him at home. We also didn’t continue his sessions with her because it was clear she knew therapies but she wasn’t to interested in knowing him. We are very blessed to have a pediatrician that has a son older than Sam who also has autism. She is knowledgeable in ways that a regular pediatrician is not. And she listens to us. She doesn’t put much stock in the whole gluten connection but she has never tried to discourage us or sway our minds on the matter. She offers her knowledge and counsel but she allows us to be Sam’s chief advocates.

While we’re speaking of Dr. Mahaffey let’s talk about medicine. She became his pediatrician when Sam was three or four I think. When we first went to her office we told her we had no interest in putting him on medication and she was quite agreeable to our decision. If your doctor immediately jumps to putting your child on medication proceed with caution. We are absolutely not anti-medication but we feel that it should be a last resort after other options have been explored and exploited. Too many times drugs become a quick easy fix. Remember that you are your child’s best champion so take whatever time you need to research other methods. You may end up going the route of medication but it needs to be because you made an informed decision. Two years ago we felt that we had exhausted the options for what we could do for Sam. We haven’t stopped those things, such as following a  gluten free diet, but as he was reaching puberty we realized there was more that he needed that we couldn’t provide with our modes and means. So we started him on medication. It was the right decision made at the right time. My point is that medication is and can be a viable option. Just be aware that there are other options just as viable out there.

As I mentioned we do have Sam on a gluten free diet. This is one of those treatments that can be a little divisive. Some experts nay say the whole idea…others completely support it. Some parents swear by it and think everyone on the spectrum should be gf and then there are those of us who recognize that it is helpful for us but may not make a difference for others. I would encourage parents to be willing to at least try it before dismissing the idea though. Next week, even though technically we’ll be out of April and autism awareness month, I’ll share more about being gluten free.

One last thing on treatments. Speech therapy was invaluable and probably the most helpful thing we did for Sam. It is also incredibly expensive and insurance doesn’t cover nearly what is needed. But if you have to choose one thing that comes from an outside source this is where I would start, especially in the very beginning. Educate yourself and learn all you can from what they do so that it isn’t just a few hours here and there but something you can continue at home. No matter what you’re doing know that beyond anything else, consistency is vital for success. Keep pushing forward no matter how slowly it may seem you’re moving. Progress is progress.

Now on to this week’s Sam story. There is a misconception that autistic kids are not affectionate or empathetic. I would argue that how they process these things and how they express it is a more accurate description.  He’s close to all of his sisters and the dynamics are unique to each of his relationships with them. When Sam and Abby were little they shared a room for several years and he viewed her as his best friend. One time she had been disciplined for something and Sam was really upset on her behalf and was consoling her afterwards.

“Abby, when Mommy spanked you it just broke my heart.”

Paula’s No Rules Blog Party    Photo Story Friday 

2 thoughts on “Sam’s World ~ What We Do

  1. Something that worked for well for our son was to severely limit processed foods and food dyes. We also added in various nutritional supplements.We taught him the need to have some alone time when he was getting overwhelmed by people and how to recognize and identify what it was.That was a huge help for all of us because as parents we didn't see that for a long time.As a parent of a child on the spectrum you do so many things differently for such a long time that if you start to list it out, you realize that yes, you do know your child better than any \”professional\” does. It is very important to have those \”professionals\” in your life that truly believe that parents are in charge and their job is to be a help.I wish we had that sort of benefit when our son was young and up into his early teen years. It sounds as though the pediatrician you have is a real treasure. 😀 They are hard to come by.Rachelle


  2. We do the same things, Rachelle. We believe that what he eats has a huge impact on behavior…actually we believe that about all of us, it's just that with Sam the results are a little less acceptable 🙂


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