Judging Autism?...Simply Hogwash

 

Going back a bit today, before Phillip was tested for autism. I didn't always have a positive outlook on this. In fact I was a total mess trying to figure out what went wrong. I actually burst into tears in front of my amazing doctor I was so run down and confused. The wondering if people will treat him badly, or being blamed for how he was, and really just not understanding how life was about to drastically change. Wondering if the judgment would continue on what kind of mother I was and the judgment on my son I could barely stand to think about.I had a moment shortly after that changed everything. I don't know why it affected me so much but it did and I am very glad.

A week before his testing we took a road trip to Washington and not too far down the road we stopped at a McDonald's with a huge play area for Phillip to burn off some energy. The play area had big twisty tubes with a slide and a little room with rubber balls with a basketball style setting. Phillip played but not like the other kids did. He refused to go into the twisty tubes which could have been fear. I like to think it was logic, by that I mean kids would climb in and not come out. You couldn't see more than 2 feet inside the tube before it became a total unknown. Maybe in the mind of autism, that was just insane to risk.

 Phillip stuck to the room with the big rubber balls. We watched him carefully and he would take a ball to the corner and bounce it over and over again. If he lost the ball, he would grab another one and do the same thing. Stuck to the area he chose for whatever reason just carefully bouncing that ball. Chaos all around him with kids yelling, balls flying by his head, and in my mind I was actually thinking...please do something normal!

There was another woman there with a child around the same age and the difference in communication between Phillip and this little boy was hard to watch. He was not even close to that kind of progress. The mother would watch Phillip and glance over at us, with a look of pity.

Then the defining moment came. Her little guy shoved Phillip out of his way, not hard but mom saw him do it. Phillip dropped his ball totally oblivious to what just happened, grabbed another ball and continued bouncing. The mother told her son...” you need to keep your hands to yourself and show other people respect!"

Here is comes....the boy looked at his mom and yelled back, "No, I can't and I don't want to!" mom told him he will have to sit if he doesn't. He gave her a dirty look and continued running also oblivious to what mom was telling him. Quickly I realized Phillip would never do that. I really mean never, he just doesn't have that in him. So just like that it became me watching her child and glancing at her. My first thought? Lady....you have a real problem on your hands.

That is the moment for whatever reason my entire attitude changed towards autism. My pride was totally restored and I remembered even if someone doesn't have an autistic child, we all have parenting challenges to face.

That moment proved any judgment that was about come pouring over us, was just simply hogwash.

Autism Can Be A Bit Sticky...

Phillip and I took a trip to the new large Super 1 Foods 30 miles away today. He hasn't been napping and figured he might get back on track with a nap in the van. Before heading out I crammed a couple tootsie pops in my pocket, it has been the only effective tool to distract him from the environment he may be in. I only take them if we have a 90% chance of meltdown...and those chances are pretty good when it comes to grocery shopping. I say 90% because I always hang on to that 10% with great faith.

When we walked in, the floor suddenly turned to rubber to catch the dirt people track in. Phillip had to step in carefully and off carefully, blocking some people from getting in. Or to be clearer, people tend not to walk around anyone anymore they just wait for you to move, because they really could have walked around him.

I ended up picking him up, which was an unwelcome interruption. Taking him directly into a building of madness and he erupted. I saw this coming as soon as he became distracted by the flooring but the people around us didn't. We went from smiles and isn't he cute to... O MY goodness or the WOW I heard from the other side of Phillips hand slapping me in the head was kind of a funny one. That man didn't hold back one bit, just a big eyed WOW! I smiled, as I always do.

Tried to put Phillip down after moving him, and he wasn't OK with that either. So I had to carry him and push the cart, same drill last time. I was finally able to put him down on the other side of the store, an empty isle. I gave him his tootsie role pop for calming down. Yes, I know this is not typical healthy parenting, but autism is not typical. He slowly walked near me working on his sucker along the way.

Soon I realized I did not have anything to clean him up with. So now we have calm and cooperative Phillip covered in sticky sucker and if I decided to take him to the bathroom to clean him up, it would be another interruption so we pushed on.

Checking out was wonderful, the checker seemed to totally understand what I was trying to do with him and cleared a spot for him to sit on the counter so he could not run. By this time my arms were sticky from my shoulders down, I had sucker chunks on my shirt and pants and Phillips fingers wouldn't come apart. The girl who was bagging my groceries was staring at me in the weirdest way, and I smiled at her, but that stare was really bothering me.

When we got to the van and headed down the road, after a quick sponge bath in the parking lot, and what probably appeared to be me talking to myself and washing my arms, because Phillip was in the van and the windows are very dark tint. I ran my hand through my hair, only to find I had a giant chunk of tootsie roll stuck on the side of my head. It was at that point I realized why the young lady bagging my groceries was giving me such a weird look.

So all in all, we had a pretty good trip to the store!

Is Your Soul Hungry?...Feed It.

 

Let's think about you today and not autism and about what we do for ourselves or what we don't do for ourselves. I used to do a lot of things I just don't do anymore but the one thing that I really miss doing, and I stopped doing it before my youngest was even born, is fishing.

When I lived near the Columbia River, I fished all the time. In fact never went anywhere without a fishing pole in the trunk ready to use. I loved hiking to little hidden lakes away from the busy world, or just throwing a line in the Columbia River. When I moved back to Montana I spent a lot of time just driving around getting to know the area looking for a good fishing hole. Sometimes I was alone and sometimes with the kids.

I really can't say I ever caught anything worth talking about but it wasn't really about catching anything. It was about getting away from my own busy mind and when I was fishing I never really thought about anything. It took the world away from me for a bit and gave me a break from the madness life sometimes gives us, and I had an excessive amount of madness in my life back then.

I really have no idea why I stopped fishing, I just did, and it's silly because I live in a great place for it. Maybe because the madness slowed down and I tend to get very caught up in taking care of the people I love. At some point you have to step back and ask yourself if you are remembering to take care of yourself along the way.

I guess what I am getting at today is if you stop doing things for yourself, no matter how simple it may be, you might get too caught up in your own busy mind. If you never have a short escape from the madness, how do you give all the people you love the best of what you have to offer. Take care of the people you love if that's the way your programmed but don't forget you can only do that to best of your ability if you’re at your best. If you have done everything you can and the people you love are still not OK, decide if the burden you carry for them is worth the weight. If it is, so be it. If it's not, lighten your load.

Never stop feeding your soul, you’re the only one who can give it what it needs and make it thrive and a healthy soul is awesome to be around.

Life On Autistic Repeat....

It took me a very long time to figure our son needed life to repeat itself and I mean, really repeat to ease him. I am not talking about some chart on the wall, or a simple plan. What I am talking about is life on repeat nearly every day. Ground Hog Day kind of repeat when changes are small but the days are always similar.

Each morning we wake up and he goes to the couch. While he sits and gathers himself for the day I make a pot of coffee, put his frozen gluten free waffle in the toaster and get his cup of milk. When I am done we put on one of his shows, also a mandatory repeat, I sit and blog and he eats his waffle. The repeats go on all day, and something very small can upset him. Something as small as a habit he has being interrupted is an issue. For example this morning he opened a book to a certain page, when he looks at this page, he slaps each dinosaur. Someone walks over and tries to point out the number one on the page and he shuts the book and lets them know, it was an unwelcome interruption.

These repeats I am used to and really, I enjoy the ease of knowing what works for him. What becomes difficult is when others don't understand this, when someone wants to change something because yes, it can be hard to do the same thing day in and day out. His reaction can be confusing if it seems like such a small change it really shouldn't be a big deal.There is also a flip side to this. A big change such as a road trip is such a drastic change he forgets about the repeats. So many things to see and take in, the repeats quickly become a distant memory for the time being. On the other hand when those big changes come, it can be so much, he can't stop taking it all in. So eventually he lets us know that is also an unwelcome interruption.

The complicated mind of autism is why I have a difficult time understanding the therapies we have experienced so far. I am at odds with our local rehab facility right now, for what I consider a good reason. On their end, they don't agree.

What I have found with therapies so far is you walk in feeling like you’re doing a good thing for your child; you walk out feeling like you just caused an unnecessary, unwelcome interruption. They say they have experience with autism, but the problem is it may not be experience with autism alone that is needed. Experience with each child's personality and what their autism individually provides should be a first step. A series of twenty questions is not enough.

Getting to know each case as an individual first before the jug of bubbles comes out would greatly benefit the process. Yes it would take time, but that time would be very well spent to begin an actual plan for each individual.

My last conversation with the rehab supervisor went like this; she said to me...” the therapist said he did some things an autistic child would not do." My response to that in my mind was... you just proved my point with that statement. He is autistic so comparing him to each autism case, and this goes for every case...is not going to work.

This approach puts the child and parents on a repeat process with new faces and places, and it is a very unwelcome interruption.

Vaccines, Genetics, Toxins....O MY!

 

Yesterday someone emailed me some vaccine information. I get this a lot and it began when Phillip displayed some progress delays that I was ignoring. He was vaccinated, we haven't finished yet, but at 15 months he had what he was supposed to have according to the medical community. I know people on all sides of the fence with this topic. I have read endless information and I can say I am now about as educated as I can get on vaccinations.

What I really struggle with is, since I started researching like a crazy woman I could really say vaccines may play a part. Diet and toxins may play a part, gut flora may play a part, genetics may play a part, and the one people really cringe at...God may play a part.

The problem with all this information as a mother is, let’s says the vaccines played a part. As a mother this would mean I held my son still so autism could grab him. With the intention of protecting him that's a pill I don't want to swallow. We have no known genetic history but together, maybe we created one, and now here it is. Diet and toxins I have no doubt are affecting every consumer at this point in our society.

What I refuse to do is blame myself or anyone else for my son having autism. I won't spend my days wondering if I could have done something different to prevent it. Don't get me wrong, our diet has drastically changed but I think every American could use an education on what they are poisoning themselves with on a daily basis, because it really is scary on so many levels.

Autism is here and it's a part of my child, so making sure my child loves everything about himself as he grows means I need to be the first person to love his autism. I know all too well from reading about other families struggles, there will be people who don't love his autism. My job is to set the standard for him to learn how to shut those people down as he travels through life. One day he will face an autism battle without me by his side and will need to be proud of everything he is, when that ignorance comes calling.

My advices to any parent, for what it’s worth, don’t get stuck on the pity train! Whatever you may face on your parenting adventures, remember your taking your child along for the ride. Ask yourself what you’re teaching your child along the way. Tackle any issue with grace and show your children every part of who they are has value and loving the so called flaws is just as important as loving the strengths.

When your child is grown and out in the world without you, and someone asks them "how do you stay so positive when things are difficult?" Wouldn't it be awesome to know your child's response was "It's how I was raised."

Have you considered spanking him?

Since Phillip could walk, and long before his autism diagnosis, I heard it all from people on the outside looking in. An autism parent is constantly judged, stared at, and we do see the look on the faces of disgust. My son likes to run. He isn't running away from us or being naughty he is trying to take in all that is around him. Many times I let him set the pace and stand back while he touches things. Thankfully I do have this kind of time on my hands.

Taking him to public functions has always been difficult. Grocery stores are a nightmare, not so much the shopping but checking out. Getting him to stand still while I unload groceries and pay is actually an impossible task.

What I miss is being able to stand back and watch my older kid’s school functions. We go, but I am not normally able to just sit and watch. His siblings understand but it doesn't mean they don't miss it too. I have been more then blessed with older kids who help, even when they are as tired as I am.

I have always understood Phillip will run. Phillip will be affected by sounds, lights, crowds, movement, and smells. When an entire room goes quiet, Phillip is too busy to grasp he needs to do the same.

So, what happens when you understand this about your child and society doesn't? The unwelcome advice and judgment starts to role in. Any parent of an autistic toddler can relate to some of these comments. You just need to socialize him more, he needs discipline, you’re coddling him too much, you need to put him in a daycare, and you’re not doing enough.

Some of my favorite comments over this past year have been... I didn't even know you were in the grocery store today! That one I took as a compliment because that meant we had an easy day shopping. Or the passersby who say, someone is tired, and my response to that is always...yes I am! You just need to spank him...I actually couldn't even respond to that one for obvious reasons. My sarcastic personality would have made responding comparable to a freight train collision.

The bottom line is we know our son and we know his nature. I also know anyone on the outside looking in has no understanding of how hard we work as a family to keep up with him, and we don't complain because we know he needs us.

If you are reading this and you can relate, remember when that judgment comes rolling in...Imagine that person watching your child for even a short time. You might find just the thought of them trying to keep up and ending up curled up in the fetal position crying makes you giggle, because the strength you give your child, like autism, is one of a kind.

A Busy Mind

Our son has a very busy mind. Is this because of the autism or is this just Phillip? I don't know, but I can see the autism come out every day. As his mom and spending the last year chasing him, I have been forced to have a very busy mind to. Countless hours doing research and looking for answers. Not one day goes by autism doesn't invade my mind. When I first started researching I was like most people, asking why.

What I found was there are no answers. Tons of information and all of it different, none of it confirmed. I do lean towards the genetics and diet side of things but being raised by a biologist has programmed me that way. I was also raised in Christian home, taught to trust in faith and that God makes no mistakes. I know this is a dying way of thinking in this crazy world, but I have lived it and I believe in it. I believe God and science go hand in hand.

Society tells us autism is a flaw and if your child doesn't fit into the normal guidelines and social expectations, then you need to work to modify your child until they do. What does that mean? It means taking your child the way he or she is born, embracing a crew of autism interventionists, and working to fix what doesn't meet the expectations.

At first I was grateful for that crew, but slowly I started seeing things differently. Being told over and over what needs to be fixed, being handed stacks of papers on how to get him to be what society will expect of him, started to make me wonder what the heck we are doing here.

I am no autism expert or child psychologist but I am a mother and if there is one thing I know it's you don't nurture a child by trying to change them so everyone else is comfortable. You feed their gifts; you help them to understand they are amazing and unstoppable. Just because he is autistic doesn't mean he doesn't have self esteem to feed. So I have to ask myself what are we doing to him while we are sitting around talking about how to fix him? How is this making him feel about who he is?

On that note, I have never been able to conform in my own life and have never felt I needed to meet social expectations. Why on earth would I start now....?

Metaphorically Speaking, We Are In Paris.

My son Phillip is five years old now and was diagnosed with autism at just under 3 years old.  Why the title?  What does Paris have to do with Autism?  Absolutely nothing in the physical sense but just after his diagnosis we had one of many visits from a person who came to our home and helped us create a plan for our son.  An advocate with all good intentions but during the visit he referenced a book to me. He wrote the title on a slip of paper and gave it to me recommending I read it to cope with the diagnosis.

He said to me, discovering your child has autism is like getting on a plane to Paris, but all of a sudden you discover your plane has landed in Holland. You are wondering what happened, how did you end up in Holland and what happened to Paris?  Holland is nice, he said, but Paris is better. Then he went on to explain the grieving process to us and how the book would help. The problem that day was I wasn't grieving and I wasn't feeling like our plane landed in the wrong place. I wasn't feeling like the autism diagnosis was like getting off a plane and being disappointed with our surroundings at all. What I was feeling was a bit offended by that theory.

That piece of paper with the book title, Road Map To Holland, sat on my coffee table for two days. A book I never read but I have heard it's good. The more I looked at it, the more confused I was and a bit angry at the same time. Angry that the people I encountered to help us were trained to treat us as a family who was coping with a loss without ever asking how I actually felt about it to begin with. Those people were never invited back to our home because they landed in Holland and we were in Paris.  Our tour guide wasn't going to be able to speak to us and if we forced our tour guide to show us typical landmarks our guide would meltdown. So, we would need to expect an off the beaten path non typical tour with no map and although it would be far more challenging it was still, metaphorically speaking, Paris,  

    Phillip is autistic but in no way do I feel surprised or let down by that.  I have three children and he is my youngest.  As a mother of three I know all too well you can't expect each child to fall in line, so to speak.  Each is blessed with strengths and challenges like every human being on earth.  He didn't ask for autism and I didn't feel I had any right to be disappointed in him and surely didn't feel anyone else had a right to assume I was. When we received his diagnosis, it was an answer as to why he was so different and it was a piece of paper telling me as a parent I would need to learn to be very different from what I knew as a parent up to that point.  I would never recommend anyone stop letting advocates into their home or go against an advocates plan as I did but I would always recommend paying attention to what fits into the life given to you.  Autism is a change of plan (if you had one to begin with) and it's okay to carefully choose who fits that plan and who might not.

Three years later have always felt like we are in Paris?  No way.  I have had many moments of feeling like we were as far away from Paris as you can get.  In fact moments even Holland sounded pretty good.  Moments of complete defeat and no idea how to push forward. I would lying if I said I never watched a typical child his age and felt some sadness that he struggles but I shove that back as fast as I can because It's not okay to do to him. He's just flat out not typical and comparing him, even silently in my head is not fair. After all, I am positive he has never watched other moms and felt sadness because he was given me, or at least I hope not.

Most of the time we are in metaphorically in Paris, wandering around avoiding loud and busy places that kill the fun. Finding people who get it, staying away from those who don't, and appreciating those who may not get it but accept it knowing our path is just different but regardless we appreciate the little miracles that we encounter along the way. Something I learned from a 5 year old who didn't ask for a different path.