Love from a sibling and the door is open!

                It can be hard for the older kids to have fun with their little brother. They do have fun with him but many times a challenge gets in the way and let’s face it, teenagers don’t always want to deal with it and they shouldn’t have to. It’s part of life though and they do know that. They also love their little brother like crazy so they take those challenges pretty well even when they don’t make any sense. For the most part they are very patient and take the moments in that aren’t a challenge just like I do. Lucky for them many times when a challenge hits they can escape to their bedrooms if they want to. I have also watched seen them step in from time to time and successfully grab Phillips attention in a positive way.

                Lately my daughter has discovered a way to just have a ton of fun with Phillip and not one challenge gets in the way. Ayla (AKA Sissy) is a huge One Direction fan and I mean bedroom walls plastered in posters and can give you nearly any random fact about One Direction that is known. Not just can, but will. A few weeks ago she began taking Phillip into her room and playing One Directions music videos on her TV. When it began Phillip would dance and loved getting the chance to hang out in his big sisters room. Quickly the dancing has turned into dancing and some singing along with the songs. Ayla absolutely loves that he does this with her and the feeling is mutual for Phillip. He even laughs when her favorite member of the band is goofy on the videos, which is even cooler in her eyes.

                The last few days Phillip has in fact figured out how to play One Direction videos on YouTube beginning first thing in the morning and it goes on all day long. If he is having a wandering around look of boredom, One Direction fixes it. If he is growing frustrated for whatever reason, One Direction fixes it. What we have around here is One Direction madness happening! 

                The interesting part is I am thrilled to see it happening in every way. It’s a bond between them and it brings nothing but smiles and fun. There is not one challenge that comes from having this in common and in fact I would even say it has made the relationship just a bit stronger.  They seem to be spending a bit more times together and big sister is happy to watch him for a short time considering they can have a One Direction marathon and it’s nothing but fun. It is also very cool to hear and see Phillip singing along or at least giving it his best shot. I have only hear him sing three songs and all of three of them began a short time ago. First three years he has never really made attempts at singing like many kids do. As a matter of fact even being sung to was not really his thing, unless it was Twinkle Twinkle Little Star at bedtime and that was the only song he paid much attention to.

                When I hear that little voice trying to yell out crazy crazy crazy or yeah yeahs from his sisters room along with thumping on the floor and laughter it is a truly awesome thing to hear. I have been waiting for it; in fact I think we all have. It took a sibling full of love opening the door and turning on the music to begin this One Direction madness and thank God for it!

Push it real good! (potty subject warning)

                We have been working on potty training around here for the last week and the funny thing is I am not the one who started this mission. I learned my lesson long ago I was basically powerless in this process after I helped him get over his fear of sitting on the potty.  That small step was about as far as I was going to get with the process and we put the brakes on the mission before I caused to much damage for a future try at it.

                For the past week Phillip has been taking it upon himself to master every step of the process according to what he has learned from videos, apps, and hopefully me. He uses the word power when he has to go potty or has already gone. Verbal communication! The one thing I knew we needed to make any progress at all. He goes into the bathroom, puts the seat on the potty, sits, even uses toilet paper properly, washes his hands with a bit of help and turns off the light before he leaves the bathroom. An impressive step, because he might be the only one in the house who actually makes sure to do that. He has a mirror on the wall across from the potty to entertain himself and it works. He loves making faces at himself while he sits. I did notice an app he watched stated the toilet “takes” the potty away so I had to correct it and tell him he has to “give” it to the toilet. Seems silly but for the way his mind works it’s actually is an important correction.

                The last 5 or 6 days I have spent at least half of my day sitting on the bathroom floor rooting him on. I have sung Wheels on the bus hundreds of times and any other form of entertainment I could think of. He actually will sit for a very long period of time and I have had to keep both of us from getting bored waiting for the magic to happen. Last night I even resorted to playing Push It by Salt N Pepa but that actually just turned into fun and he had to get off the potty to dance. A nice break that gave us both a good laugh.

                At this point there is absolutely nothing else I can do to entertain, motivate, and inspire. Why is it he has the entire process down and nothing is happening? Change is holding him back, so to speak. Learning the process is not really change, it’s more like adding to routine and it has in fact become routine at this point. The change is the part he has to transition out of the diaper he has grown used to for 3.5 years to the toilet. The feeling change and his mind must grasp that going potty a different way is ok to do. You see we can sit in the bathroom all day and the moment we put a diaper on he goes potty. He actually will NOT go potty without one on and someone might think I should just refuse to put one on him. If I do that he will hold it to the point of physical pain and we have been through that before. He held it so long he couldn’t walk once and I refuse to see him in that state or put him in that state again. I tried that the first time around when I didn’t fully understand how difficult it was going to be for him to transition. I get it now and I refuse to force him onto the change because he wants to make it happen therefore he will. He wants it so bad he took it upon himself to learn every step of the process. Patience is going to pay off with this situation and allowing him to find a way. At this point it’s all up to him and making that transition. I have no doubt that he will make that transition but it’s going to take many days, possibly months, or even worst case scenario years of sitting on that bathroom floor rooting him on. If I try to force him or demand the change we go right back to no progress at all. He will regress and the tricky about regression is that also takes days, months, or possibly years to overcome. Not a risk I am willing to take.

                For now I am extremely proud him once again for doing more than we were told he might do. I have to wonder in all those meetings and verbal statements from people saying what he won’t be capable of that maybe he was listening much more than anyone felt he was. To them he was the autistic boy not paying attention but I think he was to every single word spoken.  He has been fighting very hard to prove them all wrong and in one year has been doing exactly that. If in one year he has blasted all those can’t do’s to pieces I can only imagine how much more he has to show us in the years to come. That is if I can manage to work with his mind and not against it.

               

"Understanding" Valentine's Day...is it really that important?

               I wanted to write a blog today bout explaining Valentine’s Day to a child with Autism or fun ideas for the day so skimmed a few articles. What I found was articles that stated kids with autism don’t understand the relationship side of Valentine’s Day and that idea is foreign to them. I am not listing the articles because it was just a quick look at a few and my first thought was why do so many people assume this? The answer to that is easy and it’s because of the communication barriers with some children. Then I thought why would I even write about understanding the holiday in the first place?

                If we were to ask a verbal autistic adult if they understand Valentine’s Day I am sure we would find that they do and they completely understand it is related to relationships. In fact we would find many rounding up a gift for someone they love. Or wishing someone they love would surprise them with a Valentine’s Day gift.

                Just because an autistic child or non verbal adult doesn’t show an understanding of the Holiday doesn’t mean they don’t get it or want to be included in the fun. The thought that autism doesn’t understand love or that it is foreign is crazy. We might find some logic that Valentine’s Day is kind of silly considering there are 364 more other days completely worthy of celebrating love but we all know that and yes even autistics know that. In fact the logic of autism would make that concept even easier to understand. Children don’t always grasp the entire meaning of a holiday, autism or not, that understanding comes with time, age, and creating tradition. Yes, just like all kids learn.

                How am I approaching Valentine’s Day with my son? Just like I do with my older kids, with no thought to if he understands or not. All three will get something special and all three treated the same. I don’t do anything different in regard to my son and holidays other than put a tad more thought into a gift because it is harder to get him to engage in a present, it has to be something that grabs him and I don’t want to waste money on something that doesn’t.  That’s it! Maybe he won’t show an understanding, in fact I know he won’t but to assume he doesn’t is unfair and a bit strange to me no matter what day it is. The only way a tradition is understood is the simple fact it is a tradition in the first place.

                I personally don’t care much for Valentine’s Day and think it is too commercialized anymore. I remember when I was a kid and my mom would leave a nice card and a small chocolate heart on the table in the morning. As a very young child did I understand completely what Valentine’s Day was all about? No, all I knew was it was the day my mom gave us chocolate in the morning and that was not a typical day. It was a day something special happened and those were awesome days!  Did I read every Valentine I received at school? No, but I sure tore into the candy attached to it like it would be year before I saw it again.

                I think sometimes we think too much about making sure autism understands when really if we just approach it as a special day that is enough. None of my kids are going to be sitting down and considering the meaning of Valentine’s Day or pondering love for 24 hours. The older kids will be waiting for something a not so typical day brings and Phillip will be learning that concept so it becomes tradition. He knows love because he is little boy who was born with it and maybe he will get a chocolate heart (not for breakfast) to symbolize a not so typical day. In fact no he won’t get chocolate because I do want the day to be sugar rush free for my own selfish reasons but he will get something. Something that tells him today is different and that’s that. I am not worried one bit if he understands the meaning or history behind the day. After all he understands much more already than most people give him credit for. Approach the day like it’s just a bit different and have some fun because that is all it takes to establish the tradition of a holiday, even if the reaction is not what is expected. I don’t recall even ever telling my mom that I had no idea how much she loved me and how the card she spent time picking out moved me. I just remember thinking…Chocolate!

                On that note, I think 35 years later I need to say thank you mom! For letting us have chocolate first thing in the morning every year without fail. I didn’t care about the meaning of Valentine’s Day but I did know mom sure loved us making sure to establish the tradition and making sure it was not just a typical day. I love you mom and it has absolutely nothing to do with chocolate! It didn’t 30 years ago either, that was just a perk of the day I looked forward to every year.

Actions speak extremely loud!

            

                Today was a boring Sunday and the weather wasn’t good enough to venture out much. I decided to go to the craft store and stock up on paint supplies for days just like today. My son won’t paint, finger paint anyway, because the feeling of paint on his hands is not a welcome feeling at all. I had intended on buying brushes but true to form the one item I forgot to get was paint brushes so finger painting was going to have to be the way of the day.

                I bought a ton of paint in every color and pulled out the muffin tin so he has easy access to it. Cleared the dining room floor and let him have at it. This is the part you imagine a three year old diving in and creating a huge mess but not this three year old. He carefully put just a dab on the tip of his finger and frantically looked for something to wipe it off with. I always want him to dive in but I know he won’t so I dove in instead hoping he would see there is no harm done and join me. We began with trees and flowers like most children like to see and he quickly became bored with my finger painting lack of creativity. It was getting hard to get his attention and slowly it was beginning to turn into me alone in the dining room covered in finger paint with Phillip wandering around looking for something better to do.

                That was when I knew I needed to change my approach. I was going with typical painting and his not so typical mind could have cared less.  It was time to turn on the classical music because he loves it and pulls in his busy mind. It was time to say goodbye to trees and flowers and I was more than happy with changing the approach because I was boring myself. I then proceeded to just make a mess and soon Phillip was standing over me watching with interest, walking around the picture and getting closer to the paint. Soon he sat down and started to touch the paint, carefully. Then he began to help a bit and didn’t appear to be too bothered by the paint on his hands. He did have a towel nearby to clean it off if he needed to and he did use it when the mess factor was too much. By the time we ran out of room on the paper his hands were covered in paint, his face, his arms, and he even had some in his armpit!

                I turned the music off and cleaned my owns hands off and this was when he realized what had just happened. The light went on that he was plastered in paint and did not like it one bit so up to the bath to ease his mood. I put that picture up to dry and the rest of the evening he has spent looking at our project and has gotten the picture down, gathering up the paints to do it again or add to it.

                My point to this story is, I had to stop what I was doing and try something that would pull him in. I had to help him forget about his worry of getting messy and focus on the chaos of the project. I am not sure without the chaos of it he would have ever paid attention. The music was a great help to distract him while he was watching and typically he loves classical to relax. I can relate to this part of how his mind works and I often see kids struggle in school because of boredom with the approach. The one thing I know my son and I have in common is a busy mind and if he gets bored frustration sets in. Or he simply walks away unfazed like when the project began. There has to be a way to be pulled in to forget the things that might cause a road block to the task. One of the biggest mistakes people make is underestimating just how busy an autistic mind is. With no words or very little it can be difficult to know but actions speak extremely loud.

                I have heard a few times from therapists the words “he must learn” and that is true he must but when I hear these words it is commonly in regard to learning to do what other kids his age will be doing. My question in the back of my mind is always, what if he doesn’t learn the way he is going to be taught?

                 

 

Say What? A dose of humor for the day!

                  A little humor today because I need it and humor is therapy. Since Phillip was diagnosed I have heard some of the most interesting things come out of the mouths of people around me. I have a file in my brain I call the Say What file. It sits in there and gives me a giggle from time to time so today I share some of the Say what’s in no particular order but I will begin with my all time top Say What favorite.

                “No one knows the direct cause of autism, but they say two smart people get together and have a child and there you have it, autism.”

                “You’re not going to medicate him are you?”

                “I knew he had autism, I just never said anything.”

                “Have you tried discipline at all?”

                “He just needs to get out more; it might open him right up!”

                “One day he is just going to open his mouth and start talking and you’re going to wish he never started.”

                “You need to spank him. I will do it for you if you want.” (I like to think this person was joking)

                “Have you tried showing him how to use the toilet?”

                “Jenny McCarthy cured her son, you should read her books.”

                “40 hours of therapy a week is not too much for a two year old. It’s what is required with autism.”

                “Constipation is just a nasty side effect of autism; there isn’t much you can do about it.”

                “To be honest with you, boys are just slower than girls; everything takes them longer to learn.”

                “He is so cute! You can’t even tell he is autistic.”

                “You know, Einstein had autism to.”

                “I hate to reference the movie Rain Man, but in Rain man….” (Fill in the blank)

                “You’re mourning your child. It’s like you got a plane for Paris only you landed in Holland. Holland is nice but what happened to Paris?”

                Now that I have shared my Say What mental file, and hopefully someone got some giggles out of that, it’s important to realize just how different raising a child with autism is. We can ask for acceptance and awareness but at the same time we have to acknowledge it is not so easy to understand. People really do need a little help to at least know it’s not just a difference in our children; it is really a different way of life.

Constant focus on lack of ability

                 We are still in the waiting process to get Phillip into the local autism center and I have now learned he needs to register in the school district even at three years old. New concept for me as I thought we had more time for the school issue and not sure I am totally on board with it yet. Just simply going to the autism center every day is going to be a very new piece of his routine and he is going to need time to get used to it. There is no way to tell how that will mix him up at first but of course in the long run it’s going to be a wonderful thing for him.

                I don’t know what the district plan is and to be honest I have taken my time filling out the paperwork to send back. I have some mom anxiety kicking in and holding back a bit as far as the school district goes. Won’t be able to hold back to long because I know he has to go, but my mind is telling me one thing at a time or it’s going to get ugly. I hear the same thing from each person on the phone and it is this, “the more interaction the better, and the sooner the better’. True statement and it’s proven.

                There is a common approach with autism and it comes off as a rescue mission. As much intervention as possible and as fast as you can get it. Not a bad plan and necessary for progress but at the same time I have seen my son make huge progress in the last six months by going at an easy pace. I have a hard time with the attack rescue mission that is put into place and not because it doesn’t work, but because each case is not the same. So my brain asks why each case would need the same approach. We tried the attack approach in Montana with not the best services by the way and he regressed very quickly. It wasn’t working for him at that time and maybe it will now but then, it was a nightmare.

                In the last few weeks I have spoken to a few different people trying to arrange services for Phillip. Each time I tell them his diagnosis report from May of 2012 is not a completely accurate description of what is going on with him today. Still autistic of course but he has made real progress and back in May we weren’t getting much response from him at all but every time I say this I get slapped with doubt on the other end. Meaning they don’t seem to believe me because without that rescue mission in place he can’t possibly have progressed in the eyes of some therapists. After all that is what we are all told with autism.

                I have a huge desire to have him evaluated again but it’s not because he will not be autistic. it’s because we have spent the last year and a half filling out papers and answering questions in regard to what is not doing. An endless parade of feeling like our child is lacking ability and this is also a never ending psychological beating for a parent to face. Each time you check no instead of yes on a questionnaire or a doctor asks an age appropriate question you have to say no to, you sink a bit for your child. There has been a never ending focus on what he is not able to do and that alone is enough to put a parent in the fetal position crying in a corner at the end of the day, even if you know the system has an outline every kid on earth is fighting to keep up with.

               Most of my near break downs have not been from the challenge of autism, but the doubt and constant focus on what my child is not able to do kills me. Most, becuase I can't lie some of my difficult days have been just from the challenge of keeping up with my son mentally. Physically I am keeping up but mentally I have stay one step ahead and for a child who is considered disabled this is extremely challenging! Aside from the physical problems some families endure I have often wondered if autism is considered a disability simply because the general population is unable to grasp how the mind of autism works.

Ten things I love and ten things I don't.

                Today I am listing in no particular order ten things I love about autism and ten things I do not love about autism.  

Loves

1.       Routine. I can say life is actually easier with a strict routine. Something I have never had in my life. It is as good for me as it is him much of the time.

2.       Laundry. I have a very small amount of laundry that I can blame my son for. He only wears clothes when we leave the house and doesn't get very dirty.

3.       Detail. I now live in a way I am forced to notice detail or I might miss an important clue to how my sons mind is operating.

4.       Groceries. My grocery list is limited to what I know he will eat and that leaves almost no room for waste.

5.       Little moments. Little moments used to be the general idea of what kids will do during a milestone, now the little moments have nothing to do with prewritten milestones. They are based completely on the smallest moment my son overcomes something, no matter when and no matter how.

6.        People. It is much easier to see good people when my child is acting in a way society doesn’t approve of. It makes who is who very clear.

7.       Knowledge. I have gained more knowledge in the past year than I ever could have imagined. Learning is growing and I have grown a whole lot.

8.       Finding Nemo! I had no idea how many times I could watch Finding Nemo and never get tired of it.

9.       Family. My son having autism brought me back to the family I should have never been far away from to begin with.

10.   Autism. It is strange how something that could potentially break a mother’s heart give you more strength, awesome people, a more open mind, and a healthier outlook on life in general. At the moment they tell you it feels like the end, but it’s more of a beginning.

What I don’t love

1.       Routine. As much as I like it, I also grow tired of it. I actually have a love hate feeling towards the constant routine. It can make life much easier and much harder at the same time.

2.       People. I had no idea how many people in society could be so judgmental simply by the actions of a toddler. The expectations of complete strangers are mind blowing to say the least. The standard many people hold a parent to is unrealistic autism or not.

3.       Medical information. I do not like that many doctors are asking parents more questions than parents are asking doctors. It’s not supposed to work that way.

4.       Constipation. My son doesn’t get constipated anymore but every time he is physically uncomfortable doctors always wanted to blame autism instead of addressing the discomfort. It makes me wonder just how often autism takes the blame and kids leave a doctors office in pain when autism aside, there might be a way to help.

5.       Vaccines. I do not like that vaccine info is so unclear and no one is 100% positive on the issue.

6.       Resources. Lack of and waiting is a huge problem. Topped off with wondering if the resource you find will be sufficient when it begins.

7.       Waffles. I do not like that I know I can’t run out of frozen waffles.

8.       Crowds. I know my son will become overwhelmed and this has in fact handed me some unwelcome anxiety but nothing compared to how my son feels in a crowd.

9.       Grocery stores. I have decided grocery stores are the leading cause of autism meltdowns everywhere.

10.   Fear. I don’t like that most of society’s judgment comes from fear of autism or just flat out lack of knowing.

Now that I have ten on each side of the fence you might notice nearly all of the things I do not love about autism really have nothing to do with Autism at all. Nearly all of these things are based on society and lack of knowledge. I hope one day I can write this list all over again and will be unable to come up with a full ten things I do not like because all of those things will have evolved for the better. Phillip will one day find a new breakfast food he likes, he will manage in a crowd, his routine will be able to change more, and he might even get through grocery stores in one piece, but the rest he will never have any control over.

A mirror, ambition, and a good visual created progress

                Today is I am just going to make it simple and sum up some progress around here and just how we have gotten there. Keep in mind we are still waiting to begin at the autism center and he has received zero therapy so far. I can imagine if he had, we may be much further along, but still very proud of him for what he has accomplished so far.

                Phillip has been practicing his speaking daily and on his own. That ambition started with a video called Rock N Learn phonics and reading I bought him for Christmas. A horrible video that repeats in my brain all day long but the appeal is the close shot of a mouth moving to the letters and words. No other part of the face is shown but a mouth and this has gotten his attention to the detail of speaking. He watched this video everyday and with the help of a mirror he practiced the movement of his mouth. 

                In a few short weeks he went from saying just a few things unclear to saying the entire alphabet followed by the sound of each letter and a word that begins with the letter. Not all of it comes out completely clear and he does work to do it but he is doing it! It’s is very cool to me the way he says the alphabet. He doesn’t sing it like you and I would or say each letter back to back. He begins with A, makes the sound, and says apple. Then he moves on to B and so on. He is also working much harder at saying shapes and colors with great success. A mirror and a close visual of how the mouth should move played a huge role in the progress.

                We still aren’t going out public much but we are working on coming in the house without an hour long protest. This is working similar to what our routine was in Montana. We go around the house into the backyard. He plays for a bit and I open the door a few times. It takes at least 3 tries before he steps in with one foot and yesterday he stepped in and stepped out. Today he just stepped in and stayed with no problems at all. A great accomplishment as lately getting him in house has been nothing short of a nightmare for all of us.

                A lot of the progress Phillip has made lately has been entirely initiated by him. I wish I could take more credit but all I can really take credit for is patience. Patience has been the ultimate factor and if it takes an hour to see him step into the house on his own it is an hour well spent. Luckily I have that kind of time and I know many parents do not. On that note I also live in the great northwest and we will see if he is able to change that pattern on our next inevitable rainy day.

               

                 

Didn't choose it but damn lucky enough to have it.

               Today is a day the little man has decided lights and clothes are to remain off. Most of the blinds are shut because the neighborhood cats have decided watching my dog go into full blown sensory overload through the windows is entertaining. I feel like I am in a isolation cave and fighting the urge to bust out of the front door and run around the block just to get to feel free for a bit. The reality of that thought is, I can’t run and would probably collapse 100ft from the front door.

                This brings me to accepting the reality of our situation and how that kicks me in the rear at times. Not accepting autism, because I accepted that before we even received a diagnosis, but accepting I have very little control of some things and every once in a while I lie to myself thinking I can control a situation.

                I missed my niece’s baby shower over the weekend and for weeks I told myself I would take Phillip along and all would be fine. Long drive and house full of strangers is a terrible idea, especially when the day belongs to my niece and if Phillip was to go into overload her day might have been stolen by what didn’t need to happen. This reality didn’t hit me until the day after the shower and a hard pill to swallow now that I live closer but there really are some things I just can’t take him to and hope for the best. When I was hiding out on that mountain in Montana I had a completely valid excuse for not being there but now that I am around for certain events I have had to face a whole new reality at times. Even though I know we would have been more than welcome and in a group of fantastic people, in all fairness I know what potentially could have gone wrong.

                There are a lot of things I can take Phillip to and risk it, hope for the best and many times he does excellent, but I also know that is not always how it will go. Tomorrow he has a doctor’s appointment to get a prescription for ABA therapy at the autism center and thrilled this is a step towards progress and I can even say I am thrilled to go somewhere and speak to other humans. This is the life that has been given to us.

                We don’t get to choose every aspect of our lives and challenges happen that are not within our control. Autism is just one of those unexpected challenges I have been given in this life and by far not the hardest. In fact I have learned and been awakened by it in ways I needed to be. I see the detail in life like never before and I am totally aware of everything around me in ways I never was. I thought before autism that I had life pretty much figured out but I had no idea how far off I really was. Now I am absorbing life differently and having to teach my son to do the same, while he teaches me. Yes, I know that sounds confusing but it makes more sense if you are living it. Even though I face some hard realities I have been given the gift of some pretty awesome realities along the way.

                The coolest thing about being a parent is you have no idea what to expect. Much of the time we have no idea what we are doing but the reward when it works is amazing. The moment I became a mom I knew I had a job to do that was bigger than anything I had ever done and with each child that job grew even more exciting and challenging! Yes I could run out of the door and collapse 100 ft away because of my lack of ability to run but crawling back to what I love, know, and understand would be easy to do. I didn’t choose it but I am damn lucky enough to have it.

Boredom is the enemy of a busy autistic mind

               What happens when taking your child to public places is difficult and it’s too cold to play outside? Boredom happens and boredom is the enemy of a busy autistic mind. When his mind becomes idle he expresses just how he feels about that and yesterday Phillip was clearly telling me all morning his mind was stuck on idle. He has plenty of toys and things he could play with but most of those toys don’t require him to figure anything out so he doesn’t have much of an interest for more than a very short time.

                I have spent more money than I care to think about on small pointless toys he either had no desire to play with or investigated it and didn’t care to play after he figured it out. I even have toys he will never touch but in my mind I want him to because I thought he would like them, and they sit.

                After a long morning of screaming boredom I set out to find something that would curb his idle irritation. It had to be something very busy but not too busy. It had to be without loud sound effects and bold obnoxious colors and lights. All of which he doesn’t care for and sometimes the sound alone completely kills the appeal. I had the perfect toy in mind and it was a train table similar to the one he had his intense focus on in the book store the other day and I knew Toys R Us had some complete with train set on clearance from Christmas. They had one and not in the price range I was hoping for but at this point I didn’t care one bit because everything we needed to kill boredom for more than one day was in that box.

                This is how quickly the train table eased Phillips desire to soak in information. As soon as my daughter and I unloaded the one million parts from the box, his irritation was gone. Completely gone and his patience was restored. It took my daughter and me four hours to put this entire project together and Phillip was quiet and content the entire time. Picture a mommy on the edge, a 12 year old who doesn’t understand it’s harder than it looks, very bad directions, and a toddler who spent the morning with zero patience. This should have been a recipe for a complete disaster but it turned out to be four hours of quiet therapy on a bad day.

                When the table was complete, with a few minor setbacks, Phillip was engaged and busy for the rest of the evening. He played past his bedtime quietly and got up this morning to continue his train table adventures. I was counting on his reaction this morning because there was a 50/50 chance he would be done with it, but the odds were in our favor!

                I don’t like this train table. It’s big and I am a slightly bitter about the “clearance” price but what I can’t stand even more is how boredom affects Phillip. His mind is constantly craving things to do and at this very moment he is opening and closing a sliding closet door, keeping a close eye on how it moves across the track above. Just a bit ago he was investigating the labels on everything in the refrigerator door. It is fascinating to me and extremely challenging to figure out what is not enough for his busy mind and what is too much because both elements have a huge impact on his comfort level with the world around him. A challenge so many people are trying to figure out.

I think we all have some autistic traits.

              Yesterday I decided to take Phillip to the book store for something to do. They have a large children’s section and of course they have a fun place to play set up with a train table and Thomas train set. Perfect for his mechanical mind and I thought the quiet environment would be easy for him. As we walk in I know I am not getting him to the back of the store so easily with so many inviting things to investigate. I personally wanted to stop and look around but we had a goal and we weren’t going to get there if I didn’t fight that urge. I picked him up right away and carried him to the children’s section. Once we got there he was in train table heaven. Score!

                Here is when the problem began and I could see it immediately. Phillip loves to see how things work and he will inspect it for a bit then move on but there is a not so fine line between inspect and intense focus. Inspect means he needs a little time to check things over and once he has figured it out he can walk away. Intense focus is broken only one way and it’s not pleasant, by force. I knew the moment he ignored the other children and did not break eye contact with the system of the train tracks we were in trouble. At this point there was nothing else in the room in his mind and even mom becomes totally irrelevant. I was actually full of envy when a parent stopped for a 5 min break and left and we sat through four of these encounters.

                I let him play for a very long time hoping at some point I would see a break in the focus I could jump in and let him know we were all done but the break wasn’t coming. I started to realize the only way out of the store was very far away and knew we were in for a long haul to the van when I grew brave enough to do it. That was when a pack of mommies with strollers built up so large it appeared they were planning for a week long stay in the mall rounded the corner. Each stroller was also packed with loud and excited children, yelling and ready to be unleashed. This intimidating and loud group broke the intense focus, but Phillip also slowly grabbed the two trains he had been focusing on and activated his toddler vice grip.

                He knew things had just become too much and did walk away from the group and the table but he is also a three year old who was enjoying his time and didn’t want to leave. I ended up once again carrying him to the exit that seemed a mile away in full protest. His autism was working against him in regard to the focus and loud mob, but his desire to play was also kicking in. We were in fact in a no win situation no matter how we tried to leave and I knew it long before the mommies rounded the corner. Although they did help to give me a moment of opportunity even if it didn’t appear that way to the people watching us leave.

                I think we all have a bit of those autism traits in us. The desire to touch things we think are cool, the distractions that bother us when we try to focus, the awareness of a busy and sometimes loud world, and the desire to learn what we don’t know. Sometimes we take the opportunity to slow down and really take a look at the world around us but most of the time we are all in a busy rush and don’t see what we could be taking a closer look at. Phillip’s difference has forced me to do this because I would never understand him if I didn’t. His mind just doesn’t allow him to ignore cool things or transition so easily.  Even though I was in fact full of envy over those parents that stopped for a 5 min break and moved on easily, this morning Phillip jumped on his bed and his blankets were a mess. He also fixed those blankets perfectly when he was done without me telling him to, can’t even say I would have. I think if some people could see those positive traits they might have a little envy to.

Coping with a difference he can't explain

                It seems as quickly as I figure out my sons little quirks; they change on me just as fast. Bath time is a good example of these changes because bath time has given me ideas as to how important his desire can be to have things a certain way and how quickly it can change.

                Phillip has a very strict bath time routine. He has the same toys he has always had and no, he does not allow new ones. No matter what it may be it is not allowed to break the routine of yesterday’s bath. For a long time he would get very upset if I placed him the bath tub while the water was running and shut it off. Sometimes so upset when the flow of the water stopped we had to just call it quits. He has gotten over this but it took months for that to happen.

                He has ten toys he takes in with him and one toy must sit in the side of the tub. That toy cannot be in the water and he doesn’t play with it. Typically he wants me to lift him into the bath but lately I have simply turned my back to him and he gets in himself. He could do this all along but mom was playing into the routine a bit too much. He also has a bucket the toys go into that he gets himself and puts the toys in the bath but once he does this he waits for me to dump the few drops of water out of the bottom of the bucket into the sink before he gets in. I will tell you this must be done and if it is not it puts a kink in the entire process.

                Once he is done in the bath he used to stay in the tub and we would count the toys as we put them back in the bucket. If we stopped before ten he would search for the toys to ensure we reached the right number. Then he would get out, on his own, and I drain the bathtub. For the past few weeks he has changed his routine and now he gets out of the bathtub first, then we count the toys and put them in the bucket. He no longer seems to care about the process of draining the tub so he is letting go of something and I see that as a good thing.

                Here is the part that will give a clear view of how set his mind is on the way it is done. Today we walked into the bathroom and a washcloth was hanging on the faucet. The same washcloth that he uses for his bath, but the washcloth was in the wrong place. On a normal day the washcloth is in the bucket with his toys under the sink. He took the washcloth off of the faucet, opened the cupboard and put it in the bucket. Then he pulled the bucket out and started putting his toys in the bathtub, right along with the washcloth that was just in the bathtub.

                I see things like this and it explains the other side of meltdowns and how the smallest thing can be so important to his routine and how his mind works. The easiest way to explain why he does this and why it works for him is if you know what to expect there is very little to process. Autism is considered a processing disorder in regard to being able to process an overwhelming world around the child. If a child knows what is happening next then it has already been processed, it's easier. It’s not always so simple of course but he knows what helps him so I watch and learn from him. His mind is set to do it a certain way and every once in a while he can change it up a bit, but very small changes and those small changes stick around a long time. It becomes the next routine and I never know when it will come, it just does and I am happy for him when he is able to do it. It means he has gained just a bit of the control and comfort he needs to break away. It also means he is coping with a difference he can’t explain.

Clothes are irrelevant..and thats ok.

             There are some big differences between raising a child on the spectrum and raising children who are not. One of the biggest differences I have found is being able to let go of some of that control as a parent. Just some of it because you still have to be the parent but some little things are ok to just let go. Lately our control struggle has been clothes and Phillip prefers to be without them.

Over time I have had to pay attention to the signals he gives me and work with them. He hasn’t slept in clothes in over a year and one blanket he prefers over the other. He can be in a sound sleep and if I place the unfavored blanket over him thinking he might be cold, it wakes him. So, I don’t bother with that blanket anymore. Even if I barely cover his feet, he wakes.  He taught me what will help him and to be honest help me get as much sleep as I can. We went from waking up all night long over and over to a sound sleep, as long as I am able to push back my mommy desire to put pajamas on him or cover him while he sleeps. The good side to this is I never buy pajamas for him; the bad side is some of those pajamas are very cute and I can’t buy them.

                At home he is diaper only. He knows now when the clothes come out we are getting ready to go somewhere and I have learned to sing a silly song with each item of clothing to get them on peacefully. My family thinks this is a humorous tactic but it works and if it works with humor, even better.  He is three so when someone is over and he has taken his freedom to a new level, meaning naked, well then it has gone too far so we keep putting the diaper back on and I am always pleased when it stays on for an extended period of time.

                The other day I left Phillip with my folks so I could go run an errand he just couldn’t tag along for. My parents know all too well about the clothing protest with Phillip and thankfully they are also two of the most patient loving people alive. I felt it was best to take him to their house as the environment would keep his mind busy longer than at home. I know at home they would be dealing with a boy without his clothes for sure because he takes them off as soon as he gets in the door, but other places he has distractions for a time before this happens.

                The day went perfectly for everyone and when I returned I was glad to see Phillip was still dressed keeping himself busy but his pants kept falling down so my dad rigged his pants to stay up. The drawstring on his pants had been tied to the button on his jacket and I found this to be hilarious! Phillip didn’t know and didn’t care or at least he didn’t seem to know. I had a hard time getting the knot undone but that was even more entertaining because typically I am trying to get clothes on him, not off of him.

 Sometimes it’s ok to let go of some of that parental control and even better when you can improvise to make things work!  Most important is to pay attention to the signals and work with them. The mommy desire that eats at us to have things a certain way can actually be irrelevant when it comes to what we need to. I want him to wear clothes and put on some cute Toy Story pajamas but he needs to be without, so we compromise and improvise. It may seem when my three year old is streaking by at home for the 25^th time today that I have not practiced my parental control but if we slept sound last night and he agreed to wear clothes out of the house with a little help from a silly song, we have success!

Life with autism: In their own words

                I really liked this short video and the little man at the end made me laugh. Logic is key! That doesn't mean someone with autism can't be funny or understand different social cues. It means they might just need a little help with it...you could say in the same way some of us need a little help with logic.

Reach out to autistic adults.

               Yesterday was a day a cold hard reality slapped me right across the face. It took most of the day to accept this reality and know that it is more powerful than anything I can change in the blink of an eye. Baby steps and with the help of so many people this reality could change but when I laid down last night to sleep I had to tell myself, this is the way it is going to be and I have to find a way to understand that.

                There is a stigma on autism that many people believe to be true and maybe in some ways it is but it is certainly not a fair one. Yesterday when I said the word autism the conversation when to directly to discipline and how to handle my sons behavior. The problem was I hadn’t stated my son had issues with his behavior. I know many people on that statement alone would say…but he has autism.

                Phillip and so many other kids are not burdens in the world but the world becomes there burden. I don’t look at the challenges autism brings as discipline problems because his nature is good. He never tries to hurt anyone and he has a genuine interest in everything that actually keeps him too busy to attempt to be a naughty boy. The only time Phillip is hard to manage is when the world comes crashing down on him and this no fault of his own. Knowing this it makes it hard to know so many people feel autism and bad behavior go hand in hand. When I am carrying him out of a busy environment and he is upset, this is because his mind isn’t making the change as fast as it needs to. Then he gets a wave of feelings and his mind also has to get a hold of that. Both of these things at the same time cause a challenge. He has to learn to cope with that collision and I believe he will with patience and time. He is already learning his own mind and using some skills to calm himself when he feels that collision coming but he is three and he has a long way to go.

                Yesterday I also came to another reality but not such a hard one to accept. I think people want to understand autism and do listen but the complexity of how each child operates is very difficult to grasp. Some people truly have no understanding and it is much easier to view a child as naughty then it is to understand the process of an autistic mind. I can blog and blab my mouth until the end of time and there will still be an inability to grasp the difference.  They hear what the media reports and they know padded rooms and restraints are used. Immediately the view of someone with autism is distorted to think these tactics are necessary to control such out of control children. Then again that’s a hard thing to argue to because even some parents support those tactics, because they haven’t found another way…yet.  

                Maybe in time this stigma will not be so strong when it comes to our kids and maybe in time people will discover new tactics to help. Adults with autism play a key role in the progress and listening to how they would have liked their own struggles handled by others. If people will listen to celebrities like Jenny McCarthy, who gave her child bleach enemas, why are we not utilizing the logic of adults who truly do understand?

Dear Society...

Dear Society,

                I am a mom and I have three kids. My kids are twelve, fourteen, and three. My older children were toddlers together and for the most part they were able to live up to our social standards but I don’t encourage it and I will say in the last ten years our social expectations have risen quite a bit. My older children could speak full sentences very young and communication was never a problem. They could sit still when they needed to and understood the world around them better than many adults I have met in this life. I worked hard with them to make sure they were prepared for school and ahead of the expectation. They are well behaved and work hard in school. They do as I ask 95% of the time and are growing into amazing additions to our crazy adult world.

                I have taken the same approach with my youngest but he doesn’t speak sentences. He doesn’t tolerate social order such as standing in line yet and he doesn’t pick up on those expectations we have put in place to fit in. My older children can adjust when it is necessary but alas the youngest is not able to grasp this concept. He is autistic as much as he has to learn, society still has much to learn about autism.

                You see I have worked to teach him the alphabet, numbers, colors and to behave in order to appease the people around us but he has taught me this is not so easy. Repetition is what he needs and so repetitive one person nearly can’t keep up. Technology is nice because it has a battery that doesn’t run out unlike mom. The more he sees it and hears it the more it is pulled out. An example of this would be the alphabet. Over and over I sang it, showed it to him, and forced badly made DVD’s on him to learn the sounds. There was never a sign he was retaining it until one day he showed me. He knew the sounds and he could recognize the letters. He made it all the way to letter S and he fought like hell to get it all out.

                Next time you see a child blasting by you in a grocery store or whatever public place you may be, and you see a mom blasting by you right behind him with extreme patience for her child’s actions keep in mind this repetition process. Today she got him in the store peacefully for the first time. Today she may have gotten an extra half hour out of him to get what she needed. Today she also ran out of frozen waffles and it’s the only thing he will eat for breakfast. These outings, she prays for just a few more minutes of success because the repetition of trying is what makes that happen.

                I will tell you with my son’s autism, and I can only speak for him, he sees, hears, and soaks in everything around him. He may not say it or make it known he is doing it but he is. This includes the actions of society towards him. He knows he being stared at and he sees people whisper. He notices when you roll your eyes and give his mom an odd look that doesn’t appear to be a friendly one. The nasty comments made to some parents are heard and they soak in. The repetition of society is teaching our children the social expectations they are required to learn. How society reacts to a difference makes a difference to a child and a family.

                A child with autism may not be doing what everyone around them expects of them but they are fighting like hell to understand what that means. The actions of others play a bigger role in that process than people think because on the outside looking in it may seem autism isn’t paying attention.  I ask one thing and one thing only…please practice understand and repeat it as often as you can.

                That simple act almost everyone is capable of and not only does it help just a bit to create 1 in 88 amazing additions to our crazy adult world, but a little self improvement never hurt.

Sincerely,

An autism mommy, who has run out of waffles.

The Parenthood Gestapo strikes again!

               As much human nature makes me ill sometimes there are so many times it makes me laugh. Today Phillip and I made our first trip to the post office which I knew was a potential challenge simply because there would a line to stand in. Phillip doesn’t do lines and I mean he really lacks the ability to stand still in that kind of order and be patient. It’s one of the things I am hoping the autism center will help us with although if they have an answer to this little conflict I will be shocked. At this point it feels like it’s going to take time and some maturity to grasp. 

                So we walk in and sure enough there is a line of maybe ten people and being I am trained, I survey the room immediately. Looking for two things and the first was if he could get out. The answer to that was no and it was a room small enough I could still see him no matter what. Second was if he is free to roam can he dismantle anything and again the answer to that was no. Off he went and I stood in line watching to be sure all he was going to do was run a bit. That is exactly what he did and was talking his own little Phillip language while he investigated every corner of the room. He was paying no mind to people because that is his last interest in a new environment to explore. He was also no more than ten ft from me at all times which I considered a safe distance with no dangers in site.

                That’s when I felt it…the eyes of judgment beating down on me like the parenthood Gestapo. I am used to this and it’s just part of life. I did think in a bigger area Phillip would blend in a bit more as I hoped autism awareness was more prevalent but it’s not. A lovely couple ahead of me offered to hold my place in line while I gathered my unruly child. I declined and thanked them explaining that if I can see him he is fine with no way out. The look of shock on their faces was a quick one but what I really wanted to say was….then what? Yes I could scoop him up and demand he stay in line like an obedient three year old should but I knew the judgment would grow much harsher from simply trying to get him to stand still. At one point I could see from the corner of my eye an older women actually lean forward to get a good look at the mother who was allowing this behavior to continue. I turned and smiled at her which she returned to be polite.

                Phillip wasn’t doing anything wrong I have to add. He hadn’t touched one display or caused any problems. He was simply just walking around making noise with a smile on his face and laughing at himself. I would say he was being a very good boy for his first trip there and having to wait but society always has an idea of how we all should do things. If we aren’t keeping the order of social expectations you stand out in a way some people don’t like or it just makes them uncomfortable. Soon a group of three was watching him and one of them covered her mouth and whispered to another. The talk went down the line and I had no idea what they said to each other but I did know it pertained to my son.  Could have been good and could have been bad and it doesn’t matter.

                Whenever a situation like this comes up Phillip becomes my mentor. With all the eyes coming down on him and the whispers being tossed around, he remains totally unfazed by how unintentionally rude people can be. I am told this is something about him that needs to be fixed and I can’t even force myself to agree with that.

                He was laughing, jumping around, and smiling with that social miss autism can have but at the same time I am so very grateful he missed it. Whatever was going through his mind in that room was so much healthier and inspiring then the socially intact Gestapo that was waiting for me to create the order expected. So why does this make me laugh instead of cry? Simple really….it was a room full of people who could have learned a lot from a boy who could have cared less what they thought. After all he and I were the only ones smiling and it wasn’t to be socially polite because we were smiling at each other.

For instant smiles...you must see this!

http://www.liveleak.com/view?i=ba6_1356372323

    If you haven't had the privilege of seeing this fantastic kid slappin beats on a washing machine you must check out the link above for an instant smile! We see a lot of videos of very cool things autistic kids are doing but this is one that really put the biggest smile on my face. Phillip is very into sounds around the house and investigating them so when he caught a glimpse of this young man making music on a washing machine his reaction was priceless!

     He instantly stood up and began to laugh hysterically then he started to move his hands trying to mimic what the boy is doing. It's one thing to see something cool and another to see the smile on my sons face as though he completely understands why the boy is wanted to do it.

     For instant smiles click above and be sure to catch the grin on the boys face, because it will make your own smile just a bit bigger.

     Merry Christmas and may the joy of Christmas flood your homes in a way you can't escape it!

My respect to autism service dogs!

 

              The house is growing quiet little by little and today I sent the big kids off to Montana to spend the Christmas break with their dad. This was the first time they have flown alone and you could say nerves were getting the best of them. Made if off though, safe and sound. Next week dad heads back to Dutch Harbor Alaska for work and then things will really be quiet...probably to quiet.

                Maybe I am a little weird but I like going to the airport because in all the chaos there are so many different people. You have soldiers, families, business travelers, and I noticed a lot of kids traveling alone for the holiday to families far away. In the mix of all the people I spotted a family with four kids. All of the kids were under the age of ten and what caught my attention was a guide dog that was flying right along side of the family.

                One thing that has seemed to happen to me is I am able to spot autism now in other children, if it’s clear anyway and a year ago kids with autism weren’t even a part of my thinking process. I would have never noticed this difference in children if I hadn’t been forced to learn and be educated. Sometimes you see a child who potentially has autism and the way mom or dad are handling things confirms it. Sometimes you see a child who may be autistic and the parents don’t have a clue, which shows also. The stress of the parent is flowing and for good reason if they don’t understand why there child is different. I didn’t occur to me the guide dog was an autism guide dog until I watched for bit and I have to say once I figured it out I was blown away by how much help this dog had to be for the family.

                The dog was a medium sized black lab and still appeared to be somewhat of a puppy and on the end of his leash was a little girl around the age of five or six. The little girl was distracted by everything but the dog was not. Mom and dad were busy trying to stay as organized as possible and manage all of the kids at the same time. Most of the time mom had her back to her daughter working away and I was so very full of envy she was able to do this! Every time the little girl wanted to wander the dog would not move an inch, keeping his eyes on mom and dad. Mom would circle around the luggage rack and the dog would follow right along with the little girl. I wish I could have seen up close if the little girl was actually hanging onto the leash or if it was attached somehow but I assume it was attached to her.

                Bottom line for this awesome autism dog, this little girl had a four legged friend whose sole purpose was to keep her safe and close and nothing was going to break that dog’s mission. I left Phillip at home for this airport trip for the simple fact it would have been a nightmare. Just thinking about keeping him directed and calm in a sea of people gave me anxiety, so watching the dog erase that anxiety for the family was just amazing. I bet that amazing dog even guided her through security with no problem at all. Phillip would have broken the moment we had to stand in line and the day would have only grown worse from there which made me have to fight the urge to bother this family with a million questions about how the dog has helped them with daily life. It made me want to board the plane with the kids and possibly become the most annoying autism mommy this family ever experienced.

                I read articles about guide dogs for autism and people have told me how they help but to see it in action is pretty moving when you understand the challenges. Ipads are fun and easy to use but these dogs can increase the quality of life for an entire family in such an important way, more families need these dogs. From what I could see in a very short time and just watching from a distance guide dogs for autism is an extreme necessity or at least after watching this one in action….I am sure feeling like one would be an extreme necessity around here.

 

               Here is a link to more information on autism service dogs   http://voices.yahoo.com/autism-service-dogs-5550825.html?cat=5