A Not So Complicated Regression

  Repeat and routine used to be an all day long every day way of life. Breaking it was a full blown nightmare and as a parent I had to adjust to a detailed life that almost never changed. I guess you could say it was survival and the only way to give my son any kind of peace. Peace in the details and peace in knowing everything that was going to happen from sun up to sun down. Not an easy way to live but surprisingly not impossible either. I think in some ways we both found peace living so repetitive. People would say to me change is good and they weren't wrong but they didn't understand what change did to my son and as a mother I couldn't put him through it unless it was necessary.

   The interesting twist to this is, over the few months my son has craved change. He grows bored with repeat and routine. Even the thought of repeat, such as heading straight home after therapy irritates him. We pull up to a red light and he will point down a road that either he has not been down or leads away from our house and says "go that way." A total reversal from the way we used to live. Little details still cause some upsets like getting wet or a tiny speck of dirt in his shoe but new experiences are what he is all about and boredom sets in extremely fast. Why the reversal? The number one reason is the amazing ABA therapy he attends five days a week. Easter Seals Autism Center has impacted his life in an enormously drastic way and there is no way he would be this far without them. Number two reason is at some point we stopped staying home and I started a "let's see what happens" state of mind. Thankfully we have some real success with this new approach but we certainly have had some interesting things gone wrong as well that he recovered from without rushing home. Keep in mind the people you surround yourself with when taking this approach make a big difference as well. Tolerant and easy going is important or it won't be easy at all.

   In the past few days something has happened and I would call it a regression, not a drastic one, but his attention span went away, he began slipping much more into his own world and he has been scripting with more slurred speech than usual. Meaning he has been repeating the script of the Little Rascals movie over and over again and his speech had taken such a dive no one could understand him. Even I had a hard time picking up on what he was saying.  He starting watching this movie a couple of weeks ago after not really even watching TV in general and hadn't watched that particular movie in over a year. It's only in the last couple of days he has drifted totally into it and the repeat of the movie has started to take him down. I hadn't realized how bad it had gotten until we went somewhere he loves to go, the skate park. Typically he would attempt to skate and loves watching other kids skate but he spent most of his time reciting the He Man Woman Haters vow and playing in the dirt. He also did something I have not seen him do in over a year. He was given a sticker and over and over he let the sticker go and watched the wind blow it around. Sounds like fun but this was a past behavior not a present one and a huge red flag.

   We came home and I immediately took all of his old movies and put them away starting with The Little Rascals. Every parent likes a little break and putting a child in front of the TV with a cute movie is the easiest way to get one but I would much rather entertain him myself or get out of the house than see him get taken down by repeat. I would much rather see him attempt to skateboard at a park than watch him wander around scripting a movie. I am not sure if he will progress out of this quickly but I do know allowing him to continue watching it is only going to keep him locked in. Life is not what it used to be and maybe he stopped watching movies for a reason I couldn't understand at the time. We don't buy movies anymore and only rent them so if he actually sits down to watch one it is gone quickly with no time to get locked in. This past week he has taught me minimizing how often he watches is very important and new is better. He takes in information so quickly if he is bombarded with the same information over and over that's what he is going to express. Exactly why therapy every day has done so much for him. They push what he needs to learn and they move on when it's needed, that's how progress is made. Makes perfect sense why he became stuck and so grateful he shows me what I am doing wrong quickly because if I couldn't see it by his behavior change I might have kept enjoying that short break and thought it was a complicated autism regression. It's an autism regression but it's not complicated at all. I haven't turned the TV on for him since last night and I can already see a positive effect.

  

Autism Can Only Be Explained Two Ways

     Two years ago my son could barely function. He tested right in the middle of the spectrum meaning he wasn't high functioning or low but right on the edge of both. He had no method of communicating other than body language which meant a lot of screaming and daily meltdowns that often lasted for hours. He ate very little and only drank if I placed something his hands and told him to. Largely due, I suspect, to a mess of a digestive system that caused him debilitating pain. I couldn't take him anywhere and when I did it almost always ended badly and extremely fast. I couldn't leave him with anyone for more than 30 minutes and whoever I left him with was in a state of anxiety hoping I would hurry back. Clothes, blankets, and shoes, all irritated him and just the feeling of a blanket on a cold night would wake him. He barely acknowledged anyone who spoke to him and just simply getting him to look at me was a challenge. He didn't touch anyone other than who he lived with and even hugging mom was few and far between. He was a wanderer to a point I couldn't leave his side because just saying his name to get his attention was irrelevant. He didn't have the ability to respond to his own name and people would ask me if he even knew what his own name was. I would say yes, but I was only 99% sure of that. No indication that he did, I just couldn't believe that he didn't.

  When I describe the state he was in to people quickly I say, he was gone. Just flat out gone and autism had a vice grip on him that I wasn't sure would ever loosen up. I wanted to believe he would break out of his trap but I honestly had nothing to go on saying he would other than time, patience, and extreme faith.  Along with a small handful of advocates who thought he could but I wondered sometimes if they were just taught to say positive things.  I also if I would ever even hear my son say "I love you" because he was completely non verbal.

    Today he speaks. He eats when hungry, drinks when thirsty, and that mess of a digestive system is no longer causing him pain. I can take him places for long periods of time and just know at some point he will have enough of it but it's never within minutes of arriving like it used to be. Meltdowns of course still happen but they are not every day and sometimes we go weeks without. Clothes still come off in the house but he keeps them on in public without an argument and every night he pulls the blanket up to his neck, says "I love you" and falls asleep. He acknowledges people around him and pays close attention to them, making eye contact without stress. He knows, responds, and can tell people his name along with giving high fives and hugs to people he used to retreat from. He has been able to show his sense of humor, his likes and dislikes without screaming in protest. He wanders but I am no longer super glued to his side directing him or keeping him safe every single moment because he has some ability to turn around and come back or follow. The last year has been watching my son slowly introduce himself to us and manage his own autism enough to shove the word aside and live life in a way we are not missing everything. It might be cut short but that is way better than not at all.

   Is he caught up with his peers? No, and two years behind but when I have a paper in my hands full of charts telling me where he is at by comparison, I look it over once and never look at it again. If I wasn't in a room with a therapist when it's handed to me, I honestly might not look at it at all. Does he struggle socially? Very much so but the progress he has made makes it much less of a concern. I still have to be cautious and I help him communicate daily. None of the things above have come easy but they have come and that's all that matters. Instead of fearing a trip out of the house, especially to do something new, I am excited to have the experience no matter how small it may seem to someone else. Like we are both four year olds on a new adventure because being able to break out of isolation is amazing, not easy, just amazing.

    I am not writing this to tell everyone how my son is doing but to make sure a parent out there who has locked themselves in the bathroom for just ten minutes to have a cry knows things change. Knows that stacks of charts aren't going to determine how patience and love will pay off or who your child is in this world. So that parent who has just left a grocery store with tears in their eyes and a screaming child knows one day you might get in the car with a smile giving a high five for rockin that quick trip in for milk. So that parents who can't get their child's attention know one day they might respond and look you in the eye while you speak. So a parent out there believes one day you might hear "I love you" with clarity. Believe just because autism won't let the words come out doesn't mean a child is not fighting every day to say them. So a parent out there who feels consumed by a diagnosis knows it's not the end or even a indicator of what's coming. Yes, it can be hard and yes people can be rude with a lack of knowledge towards autism but none of it matters the moment you see your child overcome something that was predetermined they might not. People will say autism is just a word but it really is a big piece of life and watching a child fight through it can be only be explained two ways...Overwhelmingly heartbreaking and overwhelmingly heartwarming. Somewhere in the middle you have to find a little peace, no matter how small it may be because it moves everyone forward knowing there is so much more to come.

If you have never...

 If you have never.....

Sat down to be told your child has a disability and handed a diagnosis to confirm.
Been treated like you don't know your own child by therapists or doctors.
Lost family, friends, or a spouse due to not accepting that diagnosis.
Cried with your child due to physical struggles even doctors can't help you solve.
Solved the problem on your own and eased the struggle for your child.
Been called a bad parent.
Gone days with only what seems like minutes of sleep.
Sought strangers online who can possibly offer support because none exists in your personal world.
Gone days, months, or years repeating just one small word with the hopes of hearing it back.
Cried because that word was spoken.
Cried because you fear it will never come.
Left a public place carrying a screaming and hitting child with a smile as you go.
Cried when you got to the car.
Fixed hundreds of meals gone uneaten.
Cried because your child sat down and took a bite.
Searched relentlessly for supplements that will take the place of nutrition that you know is not there.
Celebrated because you found one that was accepted.
Had to refuse events that you want to be at, repeatedly.
Placed locks on windows and locks on doors for your child's own protection, no matter what age.
Planned to attend an event based on sound, crowd, and escape route.
Celebrated because it went better than expected.
Cried because it was to much and the escape route failed.
Celebrated a moment of progress for a child and parent you have never met in person.
Explained a behavior only to know the person listening thinks your insane.
Signed up for a program that sends someone to your home to take over, just to take a nap.
Wished you had access to a program that offers that.
Driven or moved long distance because that is the closest helpful therapy available.
Been unable to move or drive long distance and do not have helpful therapies available.
Fought with an insurance company to cover it and lost or won the battle.
Tried numerous diets with the hope one works just a little.
Gone weeks, months, or years without taking a break because you are your child's only voice.
Been told your strength is superhuman, only to know you are in fact not superhuman.
Wondered if your doing it all wrong.
Understood the progress made, no matter how small, means you are doing it all right.
Had someone tell you, your child might go on to live a normal life.
Sat and thought about a "normal" life and realized it's all bull shit.
Been overwhelmingly grateful for a teacher, therapist, or friend who gets it.
Accepted circumstance and learned more than you could ever imagine you would have in life.


   If you have never experienced these things and many more it would be ideal to not tell someone what does or does not cause autism. It's autism awareness month and that seems to bring out the people who think they understand but there is much more to understanding autism than just reading about it online or knowing a statistic. The experience is a crazy ride full of celebrations and heartaches and living it is so much more than a few "study suggest" articles blasted out on the Internet. It's not autism argue cause month, it's not autism vs vaccine month, it's not make autism parents want to crawl in a hole month. It's AWARENESS month and many people are feeling to many are not really aware at all. It's not about just being aware of autism. It's about being aware of the effect and feeling what others might feel because that is how understanding is created.

   According to Wikipedia.org
 Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something. In biological psychology, awareness is defined as a human's or an animal's perception and cognitive reaction to a condition or event.

A round of miracles before we call it a night!

   We have those moments that no one can possibly understand how huge they are unless they have been on this journey every day. Moments that are an amazing breakthrough for my son that to others might just seem like a child doing what a child will do. We have family visiting from Denver that Phillip has met for the first time and with that visit aunts, uncles, and cousins that live nearby have all gathered at grandma and grandpa's house for the last two days.

   A few breakthroughs have happened just in the last 48 hours with this event beginning with just being able to stay for a long time to visit, hours, and completely out of routine. A blessing because to often visits with anyone are cut short. Day one my son pushed through keeping himself occupied and relaxed for the entire visit. Day two I could see very clearly his amazing ability to cope with the change had taken a bit of a tole on him. Typical household sounds such as the dryer running caused him to cover his ears, a big clue things have kicked up a notch. We were off to visit once again only this time I worried he had used up all of his effort the day before and we would be leaving quickly.

   His patience on day two was becoming limited and after a short time clothing became to much. Soon we had a little boy in a pull up running around in full hyper speed. Refusing to eat the very food he almost never refuses, pizza. Before the clothing removal he made his way out to the van and wanted to leave but a quick thinking big brother of mine went outside and distracted him by playing with him. His uncle may not have realized it but he did in fact help in a huge way by changing the direction of my son's mind and that allowed us to stay much longer. At one point I had decided his hyper activity was a clue we needed to call it a night but his hyper activity wouldn't even allow him to be still to put his clothes back on. Again that actually bought us more time and I was just hoping he would calm down before a meltdown. Which he did with some time to let that energy out.

   Here is the moment that nearly took my breath away. All of the family was gathered in the living room and we prepared to leave, calm and fully clothed. Our family has made a habit of asking Phillip for high fives before we leave, an easy way to interact with a comfort zone but the day before he hugged a different uncle for the first time so I wondered just how far he could take that interaction. with some direction I was watching my son go all around the room hugging every single relative, eight of them, and two were very new to him. This might seem to be no big deal but when your senses force you away from people in general it is an enormous moment for him. Especially after an evening of bordering on sensory overload that was preventing him having very much self control.

   Is it love? Of course it is. Is it trust? Very much so but autism doesn't always allow him to express that. His senses take over and prevent him from being able to. There have been times even one of his siblings who he sees every single day couldn't get a hug or kiss from him because it overwhelms him. At the end of the night what everyone else might have thought was just a round of hugs, was in fact a round of miracles and a moment I will never forget. I also expect it to keep happening because once that barrier is broken down he is able to do it again and again. He took charge of something that is in fact in charge of him most of the time and when he does this, he doesn't forget how to repeat that control. It's really finding that control that is the challenge and that can take a very long time, worth every second of the wait.

Our top ten pros of autism. What are yours?

   We often hear about the challenges of raising a child with autism and the hardships a parent faces but is there a flip side? Yes, there certainly is here. I can only write on our own experience and I will say there are pros and cons to my sons difference. Autism cons are most often seen in public when a meltdown hits or my son kicks into top speed from so much to explore and the pros often aren't seen  or really even spoken about enough. Today I am listing some of those pros and believe it or not you might see how autism has at times made parenting a bit easier than most would expect.

1. Bedtime. There is never a night he disagrees with going to bed. That's right! A child with autism who will in fact stop everything, turn everything off, and march right up to bed when I say it's time. He climbs into bed rolls over and in a short amount of time falls asleep. Autism does sleep here, as long as we go about it the same way every night.

2. He is never messy. My son does not like to make a mess and prefers an order to things. If he finds a toy in a toy box, you can bet it will not go far from that toy box.

3. Doesn't fuss over leaving things at home. If we are leaving the house all I have to do is tell him the toy stays home and he then puts it down because after all, mom just said that is where it belongs and there is logic in that. He does it and at 3 years old does not ask why or try to change my mind. Of course he doesn't have that communication yet but even a child with limited speech can get that point across if they want to.

4. Almost never cries for a toy in a store. My son has never wanted to leave a store with a toy in hand. I say almost because if he isn't allowed to inspect a toy he is interested in he then might get upset but never does he want to actually take it home. If he finds it in a store then the store must be it's proper place. I once fought with him at two years old to walk out of a toy store with a toy plane I bought for him. He did not want to leave without putting it back on the shelf. I ended up putting it in my pocket and giving it to him later on that day, at home.

5. His eating habits are limited. He never requests junk foods and this makes for an easy grocery list.

6. He needs routine. Routine can make for easy transitions if it is a daily habit such as getting ready to go the autism center. I say it, he knows exactly what to do and does it. If he knows what to expect than I know what to expect and it flows fairly easy.

7. Getting out of the bath. All I have to do is turn on music from How to Train Your Dragon and that is part of his routine that tells him it's time to get out. No fuss, no questioning just hit play on the Ipad and he climbs out.

8. Verbal praise. My son thrives on verbal praise and interaction, he just loves it. If he does a great job simply saying it or dancing means the world to him. Material rewards are totally irrelevant to him. He does not see the value in material reward at all, it's just stuff.

9. Kindness. He is naturally kind to everyone. Kids his age very often push each other and are testing the world around them, trying to figure it all out. I see parents all the time having to stop a child and tell them to be nice. I have never had to do this and most of the time I have to interfere because he does not know how to react and will be run right over.

10. Work ethic. Yes, a three year old can have a work ethic that seems to be just part of who he is. He has only cried one time leaving him at the center in 6 months 5 days a week and it was when we first began. He now approaches his session like it is his job and it's time to work, on most days marching right in ready to begin with or without the therapist for the day.

    There you have it, ten pros to raising an child with autism and really if I sat here long enough I could come up with much more. I have often asked myself if these things are related to autism or are they just him and at this point I can answer that by saying it's both. All of these things I could probably turn and point out the cons of each but that's not what the mesg of this blog is about. It's very easy to get absorbed by the challenges and overlook little elements that really are at times outweighing those challenges, but for us the pros are there. When I discuss autism with people they ask about the difficulties because that is what they know autism to be, difficult. They aren't wrong but they are also not always aware there are some very strong positives along the way.

The shoelace saga comes to an end

     How small can a detail be to throw off my son? Very small and sometimes I tell myself he will grow used to a change only to be proven wrong.

     Around a month ago I set out find new shoes for my son and just picking out shoes can be a challenge. For one, I can't take him with me because he will not stand still in a department store. For two I have to inspect the shoes for anything that might cause him discomfort and that could be a shoe being to heavy, made of out of something that doesn't bend well, where will hit on his ankle, and of course because he is not with me will it even fit. When I set out to find him some shoes I had an idea of what I needed, the size, and knew a short flexible canvas that hit just below the ankle would be the best.

      The day I searched every slip or Velcro shoe I found was not the right size and decided to get him some lace up shoes. With the thought having him sit every day to lace them up would actually be good for his patience and a helpful way to get him to sit still for a just a moment. In my mind I thought I had it all figured out and the lace ups would create a positive situation. Found the perfect shoes and he loved them. They fit perfectly and he sits still every day to lace up those shoes. Total success and smile on my face for a job well done, sort of.

      The shoes a month later and daily protest are going to have to be replaced. The shoelaces are causing a daily irritation for him and the only reason the shoelaces are a problem is because they do not fall on his shoes in the proper place, wherever that may be. The first couple of weeks he stopped walking a lot to bend over and try to place the shoelaces where he wanted them to stay. Every day I had hoped he would ignore them but every day they irritated him more. When he could not get to stay in place he began walking on his heels with the idea they would fall back into place. So, after weeks we had a boy walking on his heels and stopping every few feet to adjust the laces. The only thing that keeps him moving in these shoes is to tuck the laces under the bottom of his pant leg so he cannot see them which doesn't last long. Now leading to mom stopping to tuck them under, to Phillip stopping to place them properly, to walking on our heals, to flat out taking them off.

    When I picked him up from the autism center today his therapist told me the shoes had to go for his session and that was when I knew the shoes had to go in general. The smallest detail that I thought he might just get used to eventually started to become a bigger challenge than I ever thought it could have been. You and I fully understand shoelaces move and that is OK but the autism can't stand it when the shoelaces move and the autism also causes him to focus on the annoyance.

     New shoes it will be and this time I can add one more important detail to my shoe shopping adventures which will be no more shoelaces. Once we resolve this problem he will stop walking on his heels and our constant stopping to adjust will come to end, although I can't say the stopping is a bad thing because he is difficult to keep up with at full speed but full speed is much better than knowing one small detail will not let his mind go other places. Most of the time autism keeps him in constant motion but the combination of  a couple of strings and autism slowed him way down this time.

     

     

If you don't push him, you will be holding him back.

     Preschool conversation came up today between autism moms at the center. Some kids are in preschool now, others have attempted it and backing off until they are more prepared, and some like my son have not gone yet at all. Not all preschools are autism ready and just finding one that will suit your child and understand the needs is a scary thing for many parent's, all parent's really but a little different when autism is involved. We cannot just pick a preschool and run with it, we cannot always meet the required schedule in place as often times it could be to much and price for preschool if it's one that needs to be paid for is not cheap.

    We have fears for our kids when this process begins even if we know we are sending our child to a great place, the fear is always there. We all seemed to have one thing very much in common during our quick conversation and that was "what if I push for to much to fast." That statement is a very real concern and it's easy to explain.

    It has nothing to do with coddling or being afraid to put our children out into the world like most people might think. I can't count how many times in the past two years people have said to me, "if you don't do it, you will be holding him back." Whatever the event may be that has been said repeatedly to me and eventually I just began to pretend I didn't hear it. Reason being, raising a child with autism is so very different that a theory like that doesn't seem to apply like most people tend to believe. After all we see it in articles and on the media all the time. Early intervention and yes that is very important but many people perceive early intervention as get that child out there and get that autism under control. Harsh way to put it but I have had conversations with people who have that idea planted into there minds when it comes to autism.

    Here is an easy explanation as to why I am OK with not pushing my child in all directions as soon as I am told to. Pushing is good, pushing to a point that has become to much will in fact set my son back. Being to overwhelmed can put him a stand still with is progress or even send him into regression if it has really been to much. Three hours is what he attends at the autism center and most of that three hours is work disguised as fun, a perfect approach by the way, but at the end of three hours he climbs into the mini van completely exhausted. I cannot have the stereo on and sometimes even speaking to him is to much. He goes into power down mode and I let him do just that. The bottom line when someone says to me "If you don't do it, you will be holding him back" the thought in the back of my mind is always but If I do it before he is ready I will send him back, and he has come way to far in a short time. I have to chose very carefully what is right and when, many times not having a clue as another mom said this morning. We find out once it begins but I think we all know putting the breaks on when needed is not "holding" our children back. More like "holding" the progress we have seen them make and that progress is way to precious to afford loosing based on what we are simply told to do.

   Sometimes an autism parent will take a step back to simply keep things moving forward.

Quiet Approach and Consistency Breaks Down the Barriers.

   Over the past two years I have paid very close attention to who my son bonds with and why. When everyone can seem overwhelming for one reason or another, I can only imagine what people might look like to him at times. Especially when he is already very little and everything must seem large and loud to him. I have watched him react to typical things people do around children and most of the time his reaction is not what people expect simply because he doesn't view everything the same way we do.

   An adult might walk into a room and in a loud enthusiastic tone standing tall, say hello to him. He then turns and puts distance between himself and that person. We might be in public and someone will speak to him randomly but he has never seen them before and that first introduction to people is a lot for him to take in. How they look to him, how they smell and yes he will react to a smell even if he isn't close, how they sound, and most of all how they approach him. That first ten seconds if interaction is much more to him than most people realize.

   When I realized this it was our first visit from an advocate in October of 2011 and it was the first time I saw him react to a stranger in an extremely positive way since autism came to be. The reason was she walked into the house quietly, she kept her voice low, and even though I had a living room full of furniture she chose to sit on the floor. My son came out of his room and approached her right away without any hint of being intimidated by her. At the end of our visit he was playing with her jewelry and was trying to make eye contact with her. Sometimes he will get right at eye level and tilt his head back to focus on another persons eyes but up until then I had never witnessed him doing this with anyone but our family he sees every day. The reason was simple, she created a comfort zone for him and when it happened I was reminded of how many people he had encountered that were just to much in that first ten seconds. Once I understood this I knew what to expect when he was around people because of how they approached him. I personally even made some adjustments at home to turn life down when he needed it.

   Many times this has been mistaken for my son not liking someone or not bonding with someone because they could not understand but at the same time consistency is a big pay off in his life. Even if someone overwhelms him at first the consistency of the person allows him to overcome that. He can get past all of the things that turn him away if he is constantly exposed to it and it breaks down that barrier for him. My teenager daughter has a friend who comes to our home nearly every day. I stress teenagers because teenagers are not quiet, they are the opposite as we all know. Recently my son has started to hug this friend without warning because he likes her and she is a consistent person in our home no matter how loud it gets and these hugs took months to happen.

   The way he chooses to acknowledge and show affection to people doesn't just happen right away. If we are spending a day with people he knows but has not consistently been around he might even come across as now being aware they are even there. He is aware and he knows them but the barrier is still there if they are not people who are in his life every day. This is also why when a new therapist works with him at the center it takes time for him to adjust to that person. It's why he is most comfortable with his siblings, therapists,  and is just now beginning to allow hugs from grandma and grandpa who are now consistent instead of a couple visits a year when we lived far away.

   Looking back to when we lived in Montana and I would tell my son grandma and grandpa were coming for visit, there was never a reaction from him like you would expect from a 3 year old about to see his far away grandparents. Even when they walked in the door he would often hide for bit but when the visits became closer together with a quiet approach he began to express himself. Now we leave the autism center and every single day consistently he asks to go see grandma and grandpa, although he doesn't always acknowledge them when we get there he will allow hugs and kisses and that is enormous progress.

Be Grateful

   As an autism parent I constantly see people with children around me who take things for granted. I notice not because I see them as ungrateful but because at times I wonder if they are grateful. They often seem unaware of what it might be like to have to adjust in ways only an autism parent would understand. They aren't ungrateful because of course they love their children, they just at times seem oblivious to how different it could really be. Here is a list of the things I have noticed along this journey that I have often wanted to tell someone just how grateful they might want to be.

1. Having a conversation with their child.
I was once standing in line at a Ross and a very chatty 4 year old was in line with mom ahead of me. He had so much to say and mom quickly told him to stop talking. If a child can be chatty and express what is going on in their mind, be grateful.

2. Sitting in a cart at the grocery store while a parent reads labels.
I almost always see this scenario and this is one I have never experienced with my son. If a child is able to even stay anxiety free and calm in a grocery store, be grateful.

3. Parents talking about a child's favorite foods.
Typically parents will talk about a variety of foods their child likes or dislikes. If a child has accepted a variety of foods to begin with, be grateful.

4. Taking a child to see the latest Disney movie or family event in general.
If a child can process the world without extreme anxiety,be grateful.

5. Getting a babysitter.
If you are able to leave your child with others to maintain a social life of your own, for the love of God be grateful.

6. A child talking back to a parent and getting themselves a time out.
If a child has the ability to express that stubborn streak with words, of course address it but be grateful.

7. Potty training and how quickly a child is catching on.
If a child has the ability to sit long enough to master this life skill quickly, be grateful.

8. A child having a friend over to play.
Be grateful.

9. A child dressed themselves that day and their clothes don't match.
If a child can put their own clothes on without help, be grateful.

10. A child being enrolled in mainstream sports or typical programs such as swimming lessons early on.
Not an option for some to incorporate right away, be grateful.

11. Getting a child's attention simply by saying their name one time.
I often have to get in front of my son and create a disruption as to what he is focused on. Saying his name one time happens but not often, be grateful.

12. Knowing what a child's favorite book is.
Some children struggle to sit through an entire book let alone are able to say which is a favorite, be grateful.

13. Singing songs together in the car to a child's new favorite song over and over.
I have listened to parents complain about this and roll their eyes about the song of choice. Some parents would give the world to sing a really bad song on repeat with their child, be grateful.

14. A child using a fork or spoon to eat.
Be grateful

15. Temper tantrum at home for not getting what they want.
Many parents just want to be able to leave home without their child falling apart and can't even express what they want, be grateful.

   None of these differences make a parent ungrateful and all of these things go unnoticed as a blessing to most people. It's life as they know it just as autism is life as we know it but at the same time as I have sat and listened to these things come up, I stay very quiet. I can reflect back to when my teenagers where little but I cannot relate when it comes to my child with autism. It's just not the same parenting world, it truly changes how a parent views the world around them. Many times I wish I could introduce that way of thinking to others without autism forcing it to happen. Be grateful and aware of the blessings around you, large or small, because some are experiencing life a very different way.
  

Forget the Autism Stigma

   Every morning I sit down with my coffee and log into my computer to look up the latest autism news. I read the latest information and some inspiring stories but something happens almost each and every time that makes my brain shut down. Not only shut down but I  want to sit down with the writer and beg them to stop forcing people to create an idea of autism that so many kids and adults do not fit into.

   The information might be interesting and the story a nice read but then we hit the part the writer decides to describe autism, just in case someone lives in a cave totally cut off from the outside world and hasn't heard of it yet, they quickly jump to the autism stigma that is so frustrating for some. They explain autism as a disability that is on the rise and that's fact but then they jump to the autism description that is consistently pushed into the minds of everyone. Autism struggles with empathy, expressing feelings, acts out in meltdowns sometimes violent, struggles with social cues and we all know the rest. We are constantly fed stories about autism in the media and many of the stories that grab the attention of the media are just not what many of us experience in our homes.

   My son has autism. He has never acted out violently or even led anyone to believe he would. He has never bitten me or thrown anything in a fit of rage. He cares very much about how the people around him feel to an impressive level. Not an impressive level for being autistic, an impressive level as a human being.  He has a great sense of humor even with limited communication and that's a hard thing to get across when you can't speak. He expresses his feeling just like all of us do because he feels just like all of us do. When he walks into a room he isn't aware he struggles socially, not yet anyway, but the people in the room have been taught to believe he will. They see him as socially challenged but he does not. The way autism is described creates the idea he isn't what he is expected to be by society, which in turn creates the challenge. People hold that stigma and expect it after all it's what they have been taught to expect from autism.

   I always find a ton of irony on articles that will state no two cases are alike and then jump to a list of autism traits. I often wonder how can we push such a direct list of traits on society when not every autistic fits. Or are just flat out completely misunderstood. Not every parent is struggling so much with autism they are suicidal or contemplating murder to escape the autism challenges but we see it in the media way to often. Yes, autism is hard and it's more work than a parent expects. It's draining and just keeping up mentally and physically is by far one of the biggest challenges I have ever faced in this life. It's a daily effort that has to be handled with love and patience but my child is not a robot. He is not lost in an alter universe and he is not what many of these articles describe him to be. I also know I am not the only parent who feels this way. Many parents and autistic adults will read the description of autism and sink a bit, because it causes more harm than good in society. Getting to know someone with autism is the best way to know what autism brings to that individual and each will in fact be very different.

   Forget what you read about what autism is supposed to be like. Forget the stigma pushed upon us all daily. Forget the label of being socially lacking compared to the rest of us. The only way a child with autism feels socially challenged is by being treated differently. If an article says no two are alike than treat people with autism exactly that way, just like the rest of the people in the world. Like every single one of us on earth. All different and something to offer everyone in some way if we allow it to happen.

When Autism Comes to Dinner

   Autism can have an affect on the entire family and the way we all prepare for events, even the little ones. Yesterday was my oldest son's 15th birthday and trying to find some kind of fun we could have for the day was a difficult task. Not because there are no fun things to do but because I have to consider how those things will effect my youngest son. I had many things going through my mind as ways to spend to spend the day, zoo, aquarium, trip the city, all things I had to take into consideration might end up a huge fail. The what ifs start to flood my mind and although I hate to say it, the what if was what if it all goes wrong and my son's birthday is taken down by his little brothers autism. Not by his little brother but by how he is overwhelmed so easily. He loves his little brother like crazy but we are all very familiar with what could happen.

   I asked my son what he would like to do and not many ideas rolled out. I don't know if that was due to what may come of it or just lack of interest, after all he is 15, so lack of interest is realistic at this age. What he decided on was a simple trip out to dinner and I use the word simple lightly because nothing is ever so simple with autism involved. He chose a place we had been to as a family once before and it did not go well. Red Robin and Red Robin is loud and busy with a lot of things to process. At the same time there aren't a lot of places to eat he could have chosen that wouldn't have been loud and busy. The good part was we had been there before and although it ended badly I knew Phillip had already processed a lot of the restaurant once and that makes a difference. He just does not forget so a second introduction is never as difficult as the first.

   This is when the biggest affect kicked in, the mention of possibly leaving my youngest behind to avoid what might come of it. My oldest, Presly, knew we had a 50/50 chance of dinner ending very badly, early, or me just flat out having the leave the other kids at the table to explore quietly. It has happened so many times we all know this is part of the process. A sit down restaurant just does not happen often as a family because it's hard. I understood where he was coming from because I also feel the same anxiety and it was a bit heartbreaking to know leaving one child behind for a birthday dinner was truly floating around in our minds and yes, I had already considered it myself.

   We did not, we all went and today I am extremely grateful we pushed through that concern. You see Phillip often surprises us and yesterday was one of those times. The hostess first wanted to seat us at a round table and I quickly knew that was a big trigger for challenges so asked if we could somehow be seated in a booth. The booth is much easier to keep my son from wanting to wander off or run away from us to explore and she gladly did that for us. Thankfully she found us a booth tucked into a corner which was another blessing because people all around him in every direction talking and moving is just another trigger. The corner prevented the noise and movement from flooding his mind. A table in a restaurant that is wide open and in the middle of all the chaos is like inviting autism to come out and play and sometimes autism doesn't play quietly or in a designated area.

   What came of this birthday dinner, other than an obscene bill, was a fantastic dinner with a fantastic group of kids. Phillip sat with some crawling around and a couple of attempts to escape but for the most part he was more relaxed than any of us expected. The dinner was full of smiles, laughter, and the birthday young man was able to enjoy his birthday burger just as he wanted to. For the first time possibly ever, we slowly finished our food and then sat for a bit talking before the bill was paid. That never happens, we rush and often no one really finishes. Many times someone has to lead little brother out of the restaurant before the bill even comes. Challenges are always pushing when autism comes to dinner but yesterday autism was not in charge and having Phillip with us in such a state of peace was like life giving his big brother a special gift for his birthday. Even showing us all leaving him behind would have stolen a moment we didn't know was coming and I don't think any of us would have wanted to miss it for the world. We need those moments as a family desperately because it reminds us to keep fighting together. It also reminds us that when we feel defeated, we are not.
 
   We have pushed through some very hard things together and every second of it makes a difference. Not just for us as a family but for a little boy who doesn't deserve to be left behind. He needs to be there and at the end of the day I was a bit upset with myself for even considering leaving him behind. We would have missed one of the best moments we have had together in a very long time. Next time may not go as well but I do know the thought of leaving him behind will not crawl into my mind so easily again. In fact I think all of use had a large dose of faith restored in us and in no way want to miss an opportunity like that again. We have all worked to hard for it. I was reminded of a Disney movie that used to be on repeat day after day in my home when my older children were little and the saying, OHANA....family and nobody gets left behind! No matter what kind of challenges come we face them together because if we don't, how in the world can we ever overcome them when it really is each other that has gotten us this far.

  

If only I could turn the world down for him.

   What is the greatest challenge autism creates for my son, and really the whole family? It's not speech, not meltdowns, absolutely no self harm or harm to us, and not his eating habits. His greatest challenge is simply calming himself down in a new or busy environment. Doesn't sound like much of a challenge but it certainly is and it truly affects all of us regularly. The reason I consider it the biggest challenge is because I cannot do anything to help him.

   Yesterday we set out to buy new shoes with two places I intended to stop and look. If those two places didn't have what we needed then we call it a day and try again another time. I also had to pay attention to my sons behavior before deciding to make this quick and what should be easy outing. If he seemed high strung or easily frustrated it was out of the question but all seemed well and he wanted to leave the house. The problem begins as soon as we walk into the doors of a building and right now it's back to school time so a building full of fast moving people. Immediately his mind and body kick into hyper drive and his senses crash into each other.

  Physically he cannot slow down and begins to race all over the place, runs into people, and has not one idea of the dangers of running away from me. Mentally, processing delays begin and he no longer processes my voice. I can say his name 5 times and he will not respond unless I find a different way to get his attention. I know I have to get right in front of him to do it so I can at least grab his eyes if not his ears. Lately he becomes so hyper that eventually he will just lay down on the ground for a reboot and that actually gives me an opportunity to get his attention. Most parents do not want their child laying on the floor in a department store, grocery store, etc. but I personally see this as opportunity to get a hold of his mind. In fact yesterday at Ross after making it impossible to actually look for shoes to buy for him, the only way I was able to peacefully leave the store with him was the moment he laid down on the floor. Then he was still for a moment and I could quietly speak to him with a positive response. I was grateful he stopped moving no matter what people walking by staring at us felt about the situation.

   This hyper overdrive has grown to be a bigger challenge in the last month or so and taking my son anywhere that might trigger this is not fun. It's extremely hard to manage this and when you consider how many places can cause this, options become limited, extremely limited. Most of the family fun events offered in the community are a nightmare situation for him. Created for family fun but has the exact opposite impact. We still try but leave completely mentally exhausted from trying to help him get through. Even events created with autism families in mind are to much for him to take in at this point and at times it's frustrating. Frustrating to explain to others and frustrating to accept at the same time.

   I can help my son eat and stay healthy even with an extremely picky appetite. I can help him use words to communicate and I can help him work through a meltdown by leaving him alone but I cannot turn the world down. It's something with time he will have to learn to manage himself because the world can never be turned down to accommodate him or any of us. It has a huge impact on his behavior and it is a daily struggle. I don't avoid situations to hinder my son as some may think, I avoid because the situation will hinder him and I have at times even left feeling bad I forced him to be there in the first place.

   I was told not to long ago "Your to meticulous, and you need to let him just be a kid." A comment that made my heart sink because from the outside looking in I suppose that is what appears to be happening. From the inside looking out, the only thing I want for him in the whole world is to just be able to be a kid but autism forces meticulous. Meticulous brings him safety, comfort, and the ability to relax at times in a world that won't turn down. The definition of meticulous is extreme attention to detail and I could easily sum up autism the very same way, and it's a forced way of life so he can have those moments of just being a kid.

A closer look at One Pissed Off Mother

   Here it is if you haven't seen it yet, the famous letter a not so friendly neighbor wrote to a grandma who cares for her autistic grandson. I have thought a lot about this letter since it hit the online world and I think we need to get inside the mind of One Pissed Off Mother and take a really close look at what's truly ailing her.
   
   Number one her greeting, "to the lady who lives at this address" she has not one clue who she is writing to, not one. Or if she does she doesn't know a first name therefor she knows nothing about how this person feels day in and day out. The greeting alone makes everything else she states meaningless. One pissed off mother has the time to get mad, throw some purple paper in the printer, and write a stranger a letter about her feelings. Clearly her feelings are top priority over "lady who lives at this address" and time is something she can waste. A privilege most people don't have or chose not to.

   We move on to her noise complaint. I think she may have some sensory issues of her own because she seems to be much more affected by it than she should be. Might be a good idea for her to address her super hearing that cannot seem to turn down the world around her. Suburbia is not quiet or even close to it and for her own personal peace, she might want to consider a move to the country herself. A park to take the boy to and let him make noise is her recommendation so not to kick her sensory difference into high gear. A wonderful idea....if he was a dog. He is a boy who can't control his body but I bet he has more control in his mind than one pissed off mother does. Physically he struggles while her struggles seem mental. I think some fresh air and daily trips to the park would do her some good to regroup  and protect the neighbors from her lack of self control.

   The special needs parent comment, she seems to feel angry with people who she feels might be getting an extra dose of help, perhaps this is a cry for help of her own. Her desire to have a special needs parent cater to her overwhelmed and intolerant state of being is clearly a show that her silent children are very hard for her and she needs others to adjust. I think a special needs parent might be exactly the type of friend she needs to overcome this state of mind and to learn the world doesn't adjust for you no matter how badly you desire it.

  Last but not least her suggestion to euthanize this young man might suggest she is a distant relative of Hitler and on top off all of her other struggles, sensory issues, to much time on her hands, lack of peace and serenity, in need of extra help in the parenting department, extreme focus on her own feelings, a communication handicap, and a anger management course or two,  I think she might be a Nazi.

  This letter seems to a cry for help but don't worry One Pissed Off Mother they are coming for you! Some advice from a special needs parent who chose to live in suburbia with my autistic son, it's going to get worse before it gets better but good people will reach out to you and help you if you ask. I think we all now know someone who could have helped you work through your intolerant state of mind. "The lady who lives at this address" has learned to tolerate and find peace in ways you might never understand. This ignorant purple mess of a letter is one irrelevant dose of just how much intolerance she deals with and the strength she has shown is to be commended and that goes way beyond words on a paper from the neighborhood Nazi.

  

18 things I wish they would have told me!

   Getting an autism diagnosis is an emotional process and for someone who knows little about autism it can be scary. You go from being the person who knows your child better than anyone to the person who is being told in every direction what you need to do for your child no matter what you know. I remember feeling at the time like an autism diagnosis meant they all knew him better than me, and that was just simply not true. I had filled out endless paperwork, watched his skills be put to the test, listened to strangers tell me his faults and how much he lacked to keep up with kids his age. I had strangers coming into my home telling me what to do with my own child based on his difference and yes they were there to help but I think back to that time and there are some things I wish someone would have said to me. Things not taught to specialists or part of a autism training program for advocates. So today I am going to list the things I wish I would have been told during the process because they truly have affected life since and it matters to someone going through the diagnosis process.

1. It's not the end of the world! It is however the end of the world you knew and you have already been introduced to it. Now you have been given a label for it and that comes with instructions. Even then, the instructions won't always work so don't get frustrated when it doesn't apply to your child. Do what works and it might take time to figure that out.

2. If you think you are a patient person, you are going to need to learn a level of patience you had no idea you were capable of. It is about to become a superpower and it's necessary.

3. People might blame you, people you never thought would and your about to learn who is strong enough and who is not and the clarity might shock you.

4. Not everything is a side effect of autism. Pay attention some things will seem to intensify autism but many doctors will treat you as though autism caused it. Research is about to become your late night hobby for a while. Gut flora, look it up because a probiotic is going to bring your child a ton of relief.

5. Your never going to find a cause, at least not one particular one and no matter what you think caused it in your child's life it will be different for everyone. Respect that and carry on.

6. You are going to learn more about food than you ever thought you would and your also going to throw a lot of it away. Your entire perspective on food is going to change because much of the food you have been eating most of your life is toxic. Get ready, your going to fear food for a while until you learn what's good and what's not. On the other hand you might give your child cake for dinner if that's all that will be accepted that day.

7. Your social life....don't get your hopes up. It was limited before and since some people will shy away from an autism diagnosis and stop helping you, it might get even more limited for a while.

8. Eventually you meet an a lot of people who understand and offer you enormous support. 99% of those people will live in your computer. It will be the one time in your life you are eternally grateful the internet was invented.

9. If your child reacts badly to a therapy or therapist immediately, follow your instinct and not the demands of the people who want your insurance card before your opinion or input.

10. Listen to yourself talk. Your child hears everything you say and understands it. Treat your child exactly that way even if it just doesn't seem that way most days. Look up Carly Fleischmann and she will show you this.

11. Your child might not be an all star baseball player or be the quarterback on his high school football team. Dad thinks about this more than you and moms and dads have different concerns. It might seem silly but every concern matters and needs to run it's course with understanding.

12. Potty training....see number 2 (on the this list) it's not going to happen in a toilet as easy as you would like it to. You can try to force it but I wouldn't recommend that or it may take even longer.

13. Your child is going to surprise you over and over again. Be ready for those moments you were told might not happen because they might. Expect it over time even if it's the smallest moment to another, it will not feel small to you!

14. No one knew your child as well as you before the autism diagnosis and after the diagnosis that does not change. In fact you might notice just how aware you are and your child will cling to you as though you are what eases the world. It's OK to step away when you are given the chance because you are important! You will forget that from time to time.

15. Not every behavior is autism related. Lately when my child goes outside to play he rushes to the kitchen to grab a cucumber. He will not go outside without one beginning 4 days ago. Is he displaying odd behavior? Yes, and it may just be he is preparing to battle pirates and a cucumber is his weapon of choice. He is a child before he is autism.

16. Do not compare your life with anyone else's. That parent at the grocery store with a child who is totally compliant and sitting perfectly in a cart? There is more to that parents life than that moment. They have thier moments and you have yours, remember that.

17. Purchase comfortable shoes. Your going to be moving a lot. Your feet and your mind are not going to get very much rest!

18. I was trying to get to 20 with this but 18 will have to end it. So, last but not least keep this in mind every day when it gets hard. No parent has ever given birth, held a new life in their arms and said "This is going to be so easy. I know exactly what to expect and it's all going to go my way!"

Don't You Smile!

   If you are a new reader I have three children. My youngest, who is 3,  is my son with autism and my two older kids are 13 and almost 15. When my older kids were little we played a game regularly and it went something like this, if one of them was upset I would demand they not smile. Loose a toy, bad day, tired, whatever the case was I would just sternly say "don't you dare smile!" I might have had to say this a few times but eventually they would break and that smile would grab them. It was actually one of my favorite things to do with them because children cannot resist the smile no matter how bad the day is. The fight to not smile would always end up being to much and they would loose the battle. A pretty common game to play with your kids and typically ends very well no matter what the situation may be.

  So many times with my youngest I have wanted to play this game and I can tell you I have tried multiple times. Only to have it end with me feeling foolish because he in fact is not going to smile. Or I have wondered if he has even understood what I was trying to do. I would say it with enthusiasm and get a blank look and then maybe try again the next day. Eventually I began to wonder if he would ever be able to understand that game at all, after all I was telling him NOT to smile. Would he ever understand the that my intention was to create a smile or would it always be a blank look? Did he possibly think I really didn't want him to smile, or was autism just not allowing him to understand the game?

   Recently I got my answer to that and a very large dose of hope and joy for him. Just a few days ago we were in the van and he was very serious as usual. I glanced at him in the rear view mirror and could see a stern look on his face so once again I said it "don't you smile Phillip" expecting the very same reaction I had received over and over again for over a year. That is when I saw his cheek move and his eyes shift toward me. So, of course I said it again with even more enthusiasm because I saw a possibility of a reaction and to my surprise a giant smile took over his face! A dangerous moment to be driving by the way because I did not want to miss one second of his reaction. I had waited way to long for it and never expected it to come any time soon. Just asking him to smile has been a challenge we have never overcome, until now. He has not purposely smiled for pictures or on command since autism. Before autism he was full of smiles but after autism something had to be funny and if it wasn't funny a smile would not just come to him. Most people can smile when told or at each other out of friendliness. We smile all the time even of there is not major motivation attached or at least we try to but he has not been able to do this.

  We have continued to play this game and not only does he react just as he did that day but he now tells me "don't you smile" when I am not smiling. I wish I could ask him if he knew all along what I was doing and if the world was just to busy to understand. I wish I could ask him what changed that day to create the smile I told him not to put on his face and what gave him the ability to open up his mind and let it out. I can't and really it doesn't matter because once something happens you don't think ever will the overwhelming feeling of happiness for him is amazing. To see that little cheek move just a little that day was him telling autism, you don't have me. When he is older he can tell all about what it's like for him to have autism but for now we have new way to turn a frustrating situation into a smile. A huge win for him and he sure loves trying not to smile=D.

I rarely go back, before autism and this is why.

   There has been a lot of articles circulating lately on the autism vaccine debate. There always is but it seems to gaining a bit more attention and questioning for now, that is until someone puts out an article to blast it to pieces because that is what typically happens. In the past year and half I have communicated with numerous families with numerous opinions on how autism came to be for them. The people that pull at my heart the most are the ones who are completely convinced there child changed after being vaccinated. Why? because they aren't wrong but society tends to shake a finger at them for saying so. It's common knowledge in the medical field a vaccine can collide with a difference in the body and not work it's way through as expected but the problem is the research is not being done and that is just flat out sad. Not research on the vaccines but research on what is going on in so many little bodies that isn't allowing the vaccines to do there job. Actually the vaccine probably is doing what it's intended for, leaving behind collateral damage and it's OK to ask why.

   The other day I put in a DVD  I made before my son changed and this might sound weird but I almost never look at pictures of my son before it happened. How can a mother avoid pictures of her child during some of the most amazing days of his life? It's hard, very hard to see a different little boy. The pictures tell a story and as a parent it literally hurts to see that story unfold. Starting off as a healthy chubby little boy and smiling all the time. Different foods all over his face smiling and laughing through it, proud of his messy face. Wearing different little outfits I picked out and dressing him up without any problems on type of clothes. All the different people in the pictures holding him and smiles on all the faces. Life was pretty typical of a family with a new baby.

  Then the pictures start to change and the changes come directly after they day he received a heavy dose of vaccines. The smiles turn into a blank look and the idea of having his picture taken is gone to him. Food on the face completely stops for two reasons, he won't eat and he definitely will not cover himself with food as a toddler does. No more cute pajamas or outfits because clothes become a problem and it's all diaper of pull up pictures. His personality becomes hard to find in pictures and the people in the pictures are gone. It turns into him almost always alone in the pictures with me trying desperately to get a smile or just to look at me when I take it. No one can hold him anymore to pose and if they do he is clearly fighting the grasp.

   Everything changes right after a certain event in his life, our lives, and that is extremely hard to watch. Even harder to know I am not the only parent who might avoid before autism pictures because they feel the same way. When an article comes out blasting the theory that vaccines can trigger autism I think of every parent and child who avoids the before autism pictures because they just know what happened. These articles we see make us sound like we are delusional and paranoid and the people who haven't lived it roll there eyes at any opinion that states collateral damage. Ignored and shoved aside with some kind of thought we just don't accept our own genetics. I think many parents who have gone through this would gladly take a genetic difference theory any day over collateral damage. I know for myself personally that would truly make it easier but I also know that is not what gave us life with autism.

   No matter how many risk factors are thrown at me or theories people spew at me I avoid pictures of my son pre August of 2011 because that life is gone. Born in 2009 and transformed in 2011 on the day they told me it was best to do the shots all in one day then to bring him back for more pokes a week or two later. I don't blame them but I do blame science and the lack of research being done on cases like my son and so many others. It can be done and it's avoided for one reason or another which is not OK for those parents who are shot down for what they know happened right before there eyes. These parents are not in denial and they are not paranoid but they are extremely strong for understanding and pushing forward knowing the research is avoided for a reason. Lack of research tells us, we have a problem.

    For now I throw in an old DVD on occasion and when August of 2011 starts to show, I quietly say "there is goes and has fought like hell ever since." I am also reminded that we tread lightly in regard to any future vaccine talk or even antibiotics because his body doesn't accept it and until I know why, I have to chose very carefully what could possibly cause more harm to him. In fact it's a little odd to me after autism came along clearly after the vaccines and an additional allergy to the only antibiotic he has ever had no doctor has ever mentioned his little body might have a hidden difference that prevents these things from being tolerated. Doctors need symptoms to investigate a health issue and it's my thought in our case anyway, autism is the symptom and the immune system is the health issue. Instead what we get is a autism is the health issue with symptoms no one understands.

My autism parent transition, another one.

   What a wild ride autism had been for the past year and I can't count the changes both good and bad that have come our way, it actually overwhelms me to begin thinking about it. I stepped way back from the cause lately and as a mother and autism parent I am going through a transition with my feeling towards autism. Not my son but autism and how it impacts him because the impact on him has changed so much in a very short time. He is doing very well and constantly making progress. Daily he speaks more and every moment I watch him win is awesome, a lot of moments lately and we celebrate like crazy.

    Yesterday we went to an event called Whaling Days in our area and what I watched happen will explain my transition and feeling towards autism. Whaling Days is a very crowded and noisy event that is packed onto the waterfront. There was a carnival, a band playing, helicopters taking off, street vendors, food vendors of every kind, and boats lined up on the dock. I knew this was an event that would be hard for him but at the same time he is missing to much of what is basically set up for kids and families to enjoy. Honestly I am missing it to and it gets old having to stay away. I want to be able to do family fun events with my son.

   Here is what happened to him when he merged into the crowd. He lost all sense of safety, could no longer hear me, was startled by all the sounds, was running into people, was confused, and began moving extremely fast in all directions. Somehow I managed to get him to the pier because he loves the pier and we stayed on that pier moving constantly most of the time. The problem was the boats, people, and music stopped him from being aware of his surroundings. If I had not been right on him three times he would have gone off the pier and into the water. Not on purpose but from not looking where he was walking and running into people and objects. His focus was completely gone and what others saw as a high energy child that was excited was actually a child who could not calm down and was in a state of anxiety. He could not ride any rides even if he wanted to because he doesn't grasp the safety of sitting still and the movement would have terrified him. We could not get anything to eat or drink because standing in line in a crowd was not an option. We could not watch the band play because the sound was to much even from far away. You might wonder why I would even go if all we could do slow down and enjoy the fun. I needed to see how he would handle it and I sure was given a good look at how hard it is for him.

   We stayed at this event for under an hour and on the way back to the van he began running in all different directions trying to find a way out of the chaos we had to walk through. If I touched him he grew upset and if I spoke to him I had to get right in front of him at his level and repeat myself to get him to hear me. Finally I told him "It's time to be a monkey" and he knows this means to climb on my back and hang on which he did. The van was only 2 blocks away and before we hit the second block he was a sleeping monkey. He was not tired one bit before we went but that short time of coping with the situation completely exhausted him and it was all due to what autism causes for him. Before he climbed on my back I could see he was loosing energy to even lift his legs and keep moving.

   I have had people tell me autism is a gift or it is part of my sons identity but when I see him go through this kind of anxiety and struggle I do not feel autism is a gift and surely don't feel that stress he feels is part of who he is. My transition as is mother is frustration that he has no choice but to face the world this way. My transition as an autism parent is autism hinders my son from being able to let go and just be a little boy at times. I know my son was not born with autism and we all know there is an environmental trigger in many cases caused by human beings not mother nature. It flat out angers me to think about all the families and children who go through this same scenario and it might not have had to be that way. I love every single thing about my son and the fight in him is amazing, inspiring, and he is my teacher but I don't think I will ever have to explain to him how autism impacts him. He feels it and he is going to spend most of his life showing autism who is in charge. he worked very hard to do that at this event and prevented himself from breaking down at three years old. That fight in him along with me understanding his reactions to a stressful situation is what is getting him through. He consistently fights with autism to be able to do that and he consistently fights with autism to show me his own identity. Autism is not a part of his identity, it is something he is at war with and with the right understanding, help, and encouragement he is going to kick it's ass. Slowly and it might takes years but I have no doubt he will.

Even Jesus was a Toddler

   Yesterday my son and I stopped at World Market and it's one of his favorite places to go. Lots of breakables but it never worries me because he is actually a very careful child. The reason he loves going there is the toy selection and I agree with him because all of the toys are battery free and old fashioned toys that require thought. I like that and I prefer old school to the way times have changed, especially when it comes to how kids learn and play.

    He was wild and all over the place so I had to work a little harder to get through the store with all eyes beating on us. I could feel it and even though no one was rude, people don't have to be rude to be clearly judgmental towards you as a parent. It's the slow walk and stare at your child approach I see all to often. While I was paying my son picked up a vase and when he tried to put it back it fell over and rolled onto the floor, shattering. Of course this event caused everyone to stop and watch that mother with the high energy, not listening, unruly, tantrum throwing child who broke something because she isn't doing her job. Not exactly correct but that is what most people would see and the fact I didn't get mad at him probably made some of that judgment worse. It was an accident and honestly he wasn't very happy with what happened either. So, I quietly paid for the vase and we left, eyes still on us because he had already thrown two tantrums over being told no before the incident happened. He had already grabbed judgmental eyes just being three.

   I have reached a point with my son that I guess you could say I have let some things go. Some things being the way I am told he needs to be, the way he is supposed to act, and the way society has decided how every child and parent are supposed to be. To me it's all complete crap and so is any form of judgment that shoots our way.

   My son is three years old, stubborn, smart, autistic, and testing the world. Testing limits, boundaries, the environment, and top of the list he is testing me. That's what kids his age do and they don't stop, the tests just become different with different ages and stages. He throws tantrums (aside from meltdowns) and he behaves like a three year old would or should. He is definitely a challenge and I have to really work to keep up physically and mentally. I read last night there is a disorder now that basically suits kids who throw tantrums called, Disruptive Mood Dysregulation Disorder. When I read about it all I could do was feel very very bad for the state of our society and the kids growing up in it.

   Disruptive meaning what a child is doing is an annoyance. Mood, another word for how one might feel. Dysregulation, a fancy word for not being normal or regular and disorder is basically another word for mental illness. How in the hell have we become a society who has allowed our children to be considered mentally ill for acting like children? Is a childhood tantrum so completely out of line it needs to be addressed with a label ending in disorder? Have we become so blind and confused that we don't even understand how kids can be anymore? I heard an add on the radio a couple of weeks ago for ADD or ADHD and the add claimed a video game could help our children fight back the symptoms. Similar to so many adds for autism I come across. I turned the radio off right after I heard it because we live in a society that is hell bent on fixing every single personality and shaping it into some kind of extreme order that actually doesn't exist. If it did we would all be walking around exactly alike. How entirely boring would that be and impossible to ever make happen.

   My son throws tantrums and a lot of them are not associated with autism at all, they are because he is three. Six months ago he did everything I told him to when I told him to and I will to say it was easy, I was blown away by it. As a parent I kind of felt like I was getting by pretty easy but that has changed. I am glad to see it because it shows me he has a strong personality of his own that is busting through and challenging me is not something I see as a bad thing. Of course I challenge him back and want him to understand I am the mom but I don't want him to go through life doing everything he is told when he is told to by everyone. I am just his first test subject is how I see it and I am thrilled he has found that part of him, he is going to need it in a world full of confusion and people who might sometimes be wrong. People who have decided all children should be acting a certain way and conforming to a standard no one will ever live up to and adults face the same pressure.

   I don't know who is coming up with all of these childhood disorders and calling so many kids mentally ill for being kids, but I would love to have a sit down with some of their mothers. I would love to ask them what raising these people was like. Someone said to me last year after my son had completely broken down in a grocery store and at the time I felt embarrassed by it and frustrated he wasn't behaving himself. They said "even Jesus was a toddler" and that comment never left my mind. It also erased my embarrassment and I suddenly was embarrassed because I had completely forgotten that my child didn't have to be perfect. Even Jesus was a toddler and so were the people who are creating so many mental illness guidelines that apply to our kids. They had tantrums, challenged their mothers, probably caused a few public scenes, struggled in school in some way, had mood swings, and made it all the way to being an adult who could write the guidelines for things like Disruptive Mood Dysregulation  Disorder. I guess you could say they made it to being a successful adult depending on how you view success. I am no therapist and my opinion is irrelevant but I know I am not the only person tired of seeing children diagnosed and medicated for everything under the sun. It's out of control and when I read all of the stories I have I don't think it's children that are out of control, it's adults with an idea of what control should be and it's no good.

It's ok to cry, one day he will jump!

   The dreaded mom breakdown! If your a mom and have never had one of these well you must tell the rest of the mothers on earth your secret to completely holding it together always. I would be shocked though if a mom like this exists. Autism or not, every mom feels pressure, feels doubt, feels overwhelmed, feels judged, feels exhausted, and feels like she will keep doing it no matter what because it's what she does. I don't know a mom who hasn't burst into tears at some point over one of the feelings above at some time during motherhood, not any good moms anyway.

   Being an autism mom makes not one bit of difference when it comes to this topic although I think I can say a lot of autism moms cry and cry a lot. It's hard and we know it, we would be lying if we said it wasn't. We had a weekend full of meltdowns and full of routine changes, not big changes just a couple of new things tossed in we don't normally do and well when it comes to autism this can cause big challenges. We made a trip to our local dump with grandpa in an unfamiliar truck, then changed to grandpa's car to go home. All of it not part of our daily routine so arriving home left my son full of extreme anxiety. Crying, screaming, kicking clinging, and a relentless attack on his comfort level. Eventually I decided this attack was not going to stop until we did something very familiar, almost like attacking it back with what his mind craves, routine. Into the mini van we went and back to grandpa's house for just a short time. When we returned home all comfort was restored but he was exhausted and it effected him all day.

   The next day we made a simple trip to Starbucks to see old friends and this is something he has never done. I could see from his extreme energy and could hear from the sounds he was making his mind kicked into overdrive and knew we would both pay the price later on. His mind was so busy the only way back was via meltdown at that point. That's hard to understand but it's almost like he has to crash and burn in order for his mind to stop at times.

   That is exactly what happened and once again the screaming began. Now at this point motherhood kicked me and I did the unthinkable. I cried and I cried almost as hard as him. This happens to moms and I can say when my big kids where little and I was exhausted I cried a time or two as well. Not a sad cry just a cry that wants to fix it all. Moms often have to turn there backs when a child is upset so a child can work through that feeling and understand how. Maybe a child is mad about going to bed or mad they can't have a toy so a tantrum begins. Sometimes it's just an age and eventually they learn to manage what works on mom and what doesn't so it gets better. That doesn't mean it's not exhausting.

   There was a difference though between my cry now and my cry back then with my other children. You see it wasn't exhaustion because I am not tired, pretty well rested actually. I am not frustrated with behaviors or any stages he is going through. What this cry was is simply heartbreak and not a constant heartbreak, one that hits occasionally just because of how hard autism can make life for him. You see the thought that my son can't simply do something new or different without extreme anxiety breaks my heart. It is very hard to watch a little boy struggle through a very simple change to the point he has to crash. As a mother that hurts to see and hurts to know I cannot do one thing to prevent it. It is totally out of my hands. I can control his environment and I can gage what he can handle in the way of crowds or noise. I can decide if something might work or might not but I cannot slow down his mind and ease anxiety over changes.

   It's is perfectly ok to cry and this is how I look at it, I am horribly afraid of heights. I cannot even climb a ladder or stand on a chair without feeling fear. The higher I go the more fear I feel. If my mother had to strap a parachute on me and push me off a cliff nearly every day in order to for me to learn not to be afraid...I would be very concerned if she did not cry at some point and because I know how much my mom loves me, I know she would cry the very first push! At the same time if she knew eventually I would jump on my own she would still do it if she had to. The changes are scary for him and being he is only 3 understanding those changes makes it even more difficult for him. So, if I can't always fix it and I have to push occasionally we cry together and one day he will jump.

Put the bus add back up and don't forget no two cases are the same.

 http://www.sfgate.com/news/article/Seattle-Children-s-Hospital-pulls-autism-bus-ads-4654573.php


   Lately I have felt pulling back from the blog was a good idea and I have done that. Also disconnecting a bit from the online world because real life needs more connecting and I intend to do just that but this morning I heard about the story above on the radio returning home from dropping my son off at the autism center. I have to tell you it really bothered me.

   Here is why, advocates were angry about the add on the Seattle bus putting autism in a disease category and had the add pulled with an apology to boot. What a ridiculous thing to do is all that entered my mind and the reason is we cannot deny that thousands of families face extreme troubles on a daily basis. We cannot deny that thousands of kids are inflicted with numerous health problems, seizures, and total lack of being able to take in the world around them. We also cannot deny some kids are coming out of autism or rather making amazing progress and what we could say is healing over time.

   Disability or disease? How can we as advocates decide what autism is for some families? How can an advocate deny the fact that autism needs attention in the worst way from the medical community and science? Maybe the add could have been written differently, wipe out probably wasn't the best choice of words. Solve would have been ideal and maybe that would have calmed some people down a bit but in this world, maybe not.

   Here is a an example of a person these advocates didn't consider in there quest to remove autism from the bus. A young mother with an autistic child. She isn't sure if he was born that way or if something triggered it but she knows he was fine up until a certain age. All of sudden her child has numerous allergies, the child nearly cannot have a bowel movement but once a week, the child can not longer control tantrums or outbursts, the child no longer sleeps but two or three hours a night, will not eat but a selection of three foods. None of which are healthy and no matter what she tries nothing works. Her child cannot speak and because of that she cannot leave her child with anyone. Her days are spent trying to figure out the ups and downs of autism. She sees food plays a big role and yet doctors have not one answer for her. She is told genetic with a possible environmental trigger and we can say cancer or diabetes follows that same pattern to a point.

  Autism is up 74% in the ten years and the medical community has not one answer for families who need it. It is a bit disturbing to me a group of advocates would ignore the reality that autism needs more medical attention and would be offended by an add on a bus. My son is autistic and not only would I be glad to see that add but also feel a little relief the cause is being pushed medically to be solved. Different wording so not to offend would be wise but to have it removed all together is to have the attention pulled back from what so desperately needs it. There is acceptance and then there is lack of site into lives so greatly effected. We cannot disconnect ourselves from children and adults that are truly suffering or advocating for autism doesn't any good in the first place. It doesn't matter if a person believes it is flat out genetic or something caused it, either way if no one knows for sure so who gets to decide what autism really is?

   I personally don't see my son as disabled or diseased. He is a boy fighting to be understood. You can be damn sure I would like to go into a doctors office and not feel as though I was just the educator on autism when I walk out. I would like to be able to take my son in for a doctors appointment and have some kind of resolve to a challenge when we walk out instead of medical providers being just as, if not more confused than I am. Then again I can barely get my son into the building let alone a doctors appointment because the touch of strangers frightens him. I say put the bus add back up with the words "Solve cancer, diabetes, and autism" and let it role.