Autism for us and potty training....Think autistic!

                 Today’s post is about the potty so I will try to keep it clean in case you’re having a snack. My son is almost 3 and everything has pointed to ready to potty train for while now.  He is dry at night most of the time and his body kind of works on a schedule. The problem has been adjusting to such a huge change. Three years of a diaper and three years being comfortable with that process and with autism or any child, that change is a huge challenge!

                We started two weeks ago and I woke up one day thinking, we are going to do this beginning today. I laugh now because my optimism is sometimes over the top of the reality we face but being a bit unrealistic can sometimes lead to over thinking. Over thinking can sometimes lead to logic and I stress sometimes with that theory.

                We began going straight to underwear because after all wet isn’t fun so he will understand that after a few accidents right? No, it’s not that easy. Yes, he understands wet and doesn’t like it but there is the part of him that needed to be led into a drastic change of routine that didn’t frustrate him or we would in fact move backwards in the process. Another obstacle we faced was the potty in general. It is a seat with a big hole in it so that led to some real fear of sitting on it. Once I managed to get him on that seat with a hole then what? I could talk, dance, make weird noises, try to read a book, and use every other tactic under the sun to get him to sit still long enough for the magic to happen. Reality was we have autism and autism never sits still. Toddlers in general never sit still. I have been told stickers or a reward but in order to reward I had to find away to get him to sit to begin with.

                I won’t lie I was totally at odds and nearly broken with an answer to this. No matter what I read or advice I was given it felt like I just had to throw my hands up and call it good. None of those things were going to get a comfortable routine established and if I forced it I knew he would fight back and the battle would just grow bigger. Any parent who has been through the potty training process knows it can go all wrong with one bad incident.

                Here is the thing with autism that I know from my own son. Logic, reasons, and purpose has to be a factor. Boredom is the enemy and it is just another word for defeat with his difference. I put my mind to work with all of these factors running through my head and how to defeat them all at one time. There had to be a reason to sit to begin with. There had to be logic in the process meaning if he sits he will find a purpose other than going potty because he hasn’t found the logic in using a potty yet. I can’t explain that to him so I have to show him. Not show him myself so like so many people will suggest but show him through his own body. Taking him outside to pee on tree wasn’t going to work or I would end up with a teenager who only pees on trees.  I built something that gave him a reason, purpose, and soon will come the logic of why we sit. Is it the autism potty training answer?  No, probably not as it is different with each child.

                I will say in two days my son has sat on his potty without any problems. Sometimes he sits for just a short time and other times he sits for a long time. Last night he sat for nearly an hour and sat again this morning. He enjoys it and has found purpose in sitting on the potty. I am completely at ease with the process and know things will fall in line in his mind.

                I also know with a stroke of luck what I made for him inspired speech, counting, and a routine of sitting still. There are ways to work with autism and of course it's not easy. There are no easy answers to parenting in general. My sons mind never stops searching for purpose and things that ease him or interest him. Even when it comes to a process we should all understand like using a potty. There has to routine and purpose. I don’t know about you but a sticker chart sure wouldn’t motivate me to change my life from the daily comforts I already know. Three years of routine is not that easy to change for any child, but it’s not impossible either. If my idea bombs so be it and I will let my readers know but my unrealistic optimism that I pride myself on says we are pushing on with some awesome progress and my belief is it’s going to continue that way.

Temple Grandin saved the day!

               Yesterday was a difficult day for me. No one reason for it and it was just a day the positive forces inside me needed a rest. With that negativity had to room to break out. You see in the all my positive babble and constantly trying to create an understanding I really do have the days I question it all. Am I making a difference? Yes I believe I am but I am also human so life sometimes will jump up and bite me right on the backside.

                We have been attempting the potty training trials around here and I can say everyday feels like the first day we have started. This is an extremely difficult task in every way. We have made some sure progress as far as knowing we are wet and not liking it and we are finally helping with pants on and off but the sitting still on a potty seems like an impossible task. Trying to get my son to relax and be still for even a short time is much harder than I expected or maybe it’s what I expected and one reason we have waited to begin.

                I began to work on a project that I hope will help him to be still and not think so much about the process. This is also not easy because I have no idea if it will help or not. As much as I understand what autism brings my child I have my days wondering if I really know anything. He doesn’t tell me how he sees things or feels so I have to rely on my own observations and hope I am in tune with the autistic side of him. I could work on this project and it could totally fail at what I am trying to help him accomplish in fact I do have some serious doubts now that I am nearly done. I know his mind needs to be able to think about something else other than sitting still. If he has to focus on sitting in one place to long he isn’t going to relax to reach the goal. Or at least this is what I have been telling myself.

                I really felt yesterday like maybe I just have no idea what the heck I am talking about. Maybe I am just convincing myself I understand to feel like a productive mom. At the end of the day I truly doubted my own understanding in general even though I sit down every day and blog to help others understand.

                Temple Grandin the movie finally arrived in the mail and to be honest I wasn’t sure I wanted to watch it. I expected a movie about some poor autistic girl being broken by the world. I didn’t know if it was the best thing to watch on the day like I was having. I can say from the very beginning of this movie I was fighting tears. Not tears of being sad but just tears of being able to relate to the story. How her mother felt when the docs told her autism is caused by the old “refrigerator mother” syndrome. A cold heart was once to blame if you can imagine. What really brought tears to my eyes was the way the movie depicted Temple’s thoughts and immediately I realized I really did understand the difference! The questioning just went completely away with the visuals the movie gave me. A literal mind that never stopped trying to figure things out. My negative day turned right around and I was even a bit blown away by how well I understood. I have understood all along in a way that was just dead on and it didn’t come from books or research, it came simply from observing my son and knowing him as well as I do.

                This woman did amazing things and although her autism gave her abilities to figure things out easily, her accomplishments also came from the people her life that could see what she was capable of. They did not see autism as something that would hold her back but something that would take her places other people could never get to. In all her different ways the support she had allowed her to be different and be unstoppable at the same time. This is how everyone should embrace a difference and erase any doubt that a child can’t accomplish a life with meaning. Temple’s mother had to have days she wasn’t sure if she understood and days the negatives doubts took over but she pushed on and her reward was raising an unstoppable force. I am not saying my son is going to change the cattle industry but he will have a life of meaning if he is surrounded by people who allow him to. Last night when I went to bed I felt revived as a mother of an autistic child because knowing I understand is going to help him grow up understanding himself even when people just don’t get it.

Helping with chores or packing for Disneyland!

                Way to often I see stories of disabled people treated horribly. Disabled is impaired in a physical sense and they rely on the kindness of others to help them. We all rely on kindness of others in some way to survive this world but when a child or adult has a disability it can be detrimental to daily life.

                What is it that makes people treat someone with a disability so horribly? Maybe a genetic flaw or a difference the devil created just to stir up some pain in the world. Always throws me off when autism is considered a flaw but people who harm others aren’t considered flawed. You hear the stories all the time. Maybe it is a caregiver abusing someone who needs daily help, a child being restrained in an over the top way or verbal abuse from a teacher. Then you have even worse stories of kids being placed in confinement until a parent comes to get them at the end of the day. No one even letting them out to use the bathroom and they end up expressing their feelings the only way they can. Some of those ways are difficult to even mention. I remember a story a while back of a child being placed in a duffel bag in the hallway, and the school backed themselves up on the treatment. It was hard enough to imagine an education system that uses this tactic and then an entire staff that stands behind the tactic is nothing short of insanity taking over like a virus.

                So I have to ask this, if I found my child zipped up in a duffel bag lying in a hallway why on earth would anyone have to fight to defend the moral ground on that? The self control that these parents have is extremely impressive to say the least. It’s easy to read about someone else’s child and move on to the next story but actually being the parent who lives this nightmare would be a totally different story. They are faced with school policies and excuses for why these things are done. No moral policy is ever put into place by the way and typically the policy is so vague it’s hard to battle the moral ground. Maybe parents need to start requesting a moral policy so when it is broken the fight to keep their child safe is not such a difficult one. There really Is no answer to this, even camera’s won’t stop people from causing harm because if they are capable a camera isn’t going to stop them and it that is the only thing keeping them from this being an educator in general is not the line of work they should be in.

                A common mistake made by some many people is looking at someone who is disabled and thinking there is no feeling to them. Thinking they won’t feel pain in there soul, heartache, distrust, and keeping a memory of what was done to them. They can’t always express themselves so they are really a prime target for this kind of treatment.

                Think of it this way…you are 9 with a mind that is actually 5 and you have fought like hell to get to 5. You have had a bad day with no way to talk to anyone about it and your bad day is showing in whatever way you can express it. Even if you could talk about it you’re not sure how you would explain it because you are still trying to understand that social side of people around you. You get mad and maybe act out the only way you can. Now the only adult around is putting you in a duffel bag and zipping it up. You know if you try to get out more trouble will come your way so you wait…..wait for your mom to come. Now imagine you are ok with this because you have had to do this before and like I said you don’t understand the social side of people very well. That’s one reason mom sends you here…to learn social skills. Now you’re crammed in a bag sitting in a hallway, its dark and you can hear things around you. Maybe you shouldn’t have tried to express how you were feeling because the bad day just got so much worse and you know you have to come back tomorrow. Then you hear your mom coming down the hall and now you’re not sure if mom will be mad at you for being bad.  Completely confusing and painful to process in every way possible for a child and I would bet my own life it is never forgotten.

                These are the limits being placed on so many children unable to express themselves and when they do, they learn a disturbing lesson on moral ground and social handicaps that “normal” people are having so much trouble with. This is not lessons anyone should be learning and moral ground makes that pretty clear if a person has one to begin with.

                My son hasn’t started school yet and you could say it is one of my biggest fears yet with his autism. I can only pray we find a great system for him and people who have care for every child they encounter but for so many it's just not the case. This needs to change because duffel bags and broom closets should never be in the same sentence with children unless they are helping with chores or packing for Disneyland.

                 

"What can I do so he will play?"

                 It’s funny even when you don’t think you’re going to think about autism it happens all around you.  Football game this morning and although my daughter who normally lends a hand with Phillip was there, her dad was also and she doesn’t get to see him much so I didn’t ask her to help out. Seems like it would be easy to just let a 3 year old run around a school play ground and watch a game right? It’s not.

                Textures are amazing to him and it’s the things that run through his fingers he enjoys the most. Dirt is a huge one, saw dust, small rocks, and the list goes on. Once he finds one of these amazing textures he runs his hand through it, then he might rub it on his shirt. We then graduate to full on rub it on top of the head and put it in the mouth. It is his desire to completely investigate the texture and for all those who wonder why my child is covered in dirt, it can’t be stopped. Or at least I haven’t found a way yet. I have reached the point I just try to keep him from eating anything he shouldn’t. The rest will wash off in the bath and today was a very dirty day.

                Today I also found some pretty awesome inspiration from another child. A four year old boy went out of his way to play with my son. They threw some rocks and ran a bit, but I could see he was trying to talk to him and getting a bit discouraged when my son wouldn’t respond. Eventually my son would lose his focus and drift off into a texture he discovered. One second he might be running and the next it’s all about the dirt. It is nearly impossible to break his focus until he has investigated it to his standard. This happens all the time and I am used to it but people who aren’t around him don’t understand this.

                If there is one thing we can learn from young kids it is their ability to want to learn about each other. Not all kids are raised that way but when one is, you will see it and it’s inspiring. A short time later this boy was trying to get my sons attention to follow him and started to pull on his coat. An act of desperation when he just wanted to play like kids normally do.  I knew the pulling could potentially throw Phillip into a tantrum state so I walked over to see if I could ease the situation a bit. My son took off running on whatever grabbed his attention and this wise little man and I walked and talked. I explained to him that my son won’t always listen like we would like him to and he gets really into things he can’t look away from. The boy tilted his head and was trying to find the words for what he was frustrated about. Then he looked up at me and said with a sigh, “He doesn’t play like other kids.” I told him nope he doesn’t. He likes to watch dirt fly and feel grass and touch things to figure them out. Then this adorable little boy looked up and said to me “what can I do so he will play?”

                What I wanted to say was, you have a heart of gold and your desire to understand is something most adults don’t have! What I actually said to him was you can try to make a funny sound or do a funny dance. Maybe he will follow if you run. Then he thought for a second and took off running to see if my son would follow and he did exactly that.

                We could all learn from this young man for his will to try and his will to understand another child who really doesn’t get much understanding from strangers. I hope he never loses that desire and masters that as he grows up because you could say he has his own difference from so many people in the world. Empathy, care, the desire to connect, and not being afraid to ask questions! He did give up after a while but let’s be honest, playing with someone who doesn’t talk or respond is draining and he eventually was drained. I see kids like him as the positive future of autism with so many people not understanding or not wanting to understand, the entire answer to some of the autism challenges came out of a four year olds mouth. “What can I do so he will play?” there you have it! I could sit down and tell this little guy all about what people think cause autism, how people try to cure autism. I could talk about interventions, and sensory integration toys, diets, genetics and even bowel troubles kids with autism have. That one simple question he asked I wasn’t even sure my suggestions would work.

                So to the world of autism I would say this….I know a four year old who is waiting for an answer to a question we all have on our minds. He is not autistic but he is the future of how society views the difference and that is what we should be working towards.

To medicate or not to medicate.....That is the question.

                Autism support groups via Facebook are wonderful and full of supportive inspiring people who take time from there day to sit down and really care about how others are facing challenges. Some offer advice as best they can and some just let you know they are thinking of you. Both are encouraging in every way, especially if a parent doesn’t have very much understanding in their personal lives. I have met some truly amazing people on these groups, both living with autism themselves as adults or raising a child with the difference.

                Every once in a while something happens that I think gives everyone in the group a reason to feel frustrated or upset with someone else for an opinion they don’t like. It really doesn’t happen often but when it does the tempers flare. It can range from a small disagreement to one that everyone could say something about but no way to keep from offending another group member so best to stay out of it is probably the general opinion. There are also those sick minded low life Facebook prowlers who may pose as an autistic person and will mock the difference toying with a parent’s desperation to care and help. I can only guess a person would do this for the gain of personal information or self entertainment. I won’t dig much further into that because a situation like that makes me feel a strong desire to vomit.

                Yesterday there was a debate regarding medication. Interesting topic to me because when my son was first diagnosed one of the first comments made to me by many people was, don’t medicate him. Always caught me off guard because the thought had never even crossed my mind, nor did my doctor ever speak of it. The debate was, one parent said don’t medicate and another felt she had to. Needless to say the debate got ugly but a comment was made that actually did put me on the defense for a moment. This woman stated something along the lines of; parents who don’t support medication don’t understand what true autism is. When I read that I was actually offended because I didn’t know there was hostility from parents towards the different levels of autism and this is just one person. I asked her if she could clarify what that meant and she did. Still a little hostile but when I really tried to wrap my mind around her situation I could literally feel why she felt this way. True autism may not have been the best choice of words as it was more the severity of issues she has faced with her son. I could understand why she felt a bit hostile reading other parents challenges that maybe in her situation would be huge progress.

                Its true many kids just don’t require medication to live daily but many kids really do and parents are forced to medicate to ease a child from different issues we may not understand. The emotions involved with having an autistic child are hard enough when it comes to society’s judgment but when you have no choice but to try different options that may or may not work,  I would think the judgment is even more difficult to tolerate. My heart breaks for parents and kids who are trying different medications and it ends up making a child worse and the parent isn’t heard when they discuss this with a doctor. They just keep trying because all they want is to see their child have peace. The again sometimes something really does bring the peace they are looking for.

                With so many questions surrounding autism and doctors having the same unanswered questions medication has to be an extremely difficult choice. There are so many what ifs or side effect concerns that you can’t answer until you try it. Even the doctor won’t know but when a parent has to choose between watching their child possibly hurt themselves and trying something that may work, it’s easy to understand why. An even harder part of the process would be to trust the person who tells you what to try because autism is a complete mystery.

                I personally wouldn’t medicate but in no way does that mean I can’t understand why someone else would. I would say true autism is every case diagnosed because you really just can’t compare one to another. Yes there are different severities but not one person who is diagnosed or one family who is challenged with it doesn’t face judgment. Aside from autism, human beings spend way too much time judging and not enough time understanding.