Monday, August 11, 2014

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.

  

Monday, July 28, 2014

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.

Wednesday, June 11, 2014

Mystery solved

   My son has had some interesting habits and sometimes those habits are just unexplainable. Sometimes a habit appears to be an OCD symptom or autism creating repetition but the difficult part is knowing or at least trying to understand if a habit is related to autism or if it is not. He can speak but that doesn't mean he has a full ability to communicate so asking why doesn't work. Mostly he will repeat words or use words he has mastered that have nothing to do with the situation so back and forth communication is extremely limited. Not impossible because every once in a while he uses words that let me in on what is going on in his mind and that's when I discover he really is just a little boy being exactly that.

    For the past year he has had a habit that is nothing that worried me or caused any problems but just a bit of an annoyance at times. Suddenly he will run around the house either turning on all the lights or off all the lights. The off hasn't bothered me so much unless It's dark outside and I am in the middle of doing something that requires me to see, like cooking but the on I have to go around turning them all off and sometimes he comes up right behind me flipping that switch again. I have considered unscrewing the light bulbs or just flat out removing some of them to give myself a little more power so to speak on this situation he is so dedicated to. With so many habits I can contribute to the repetitive nature of autism in our home this one seemed to be just another repetitive habit only patience was going to hopefully stop. Although it's a been a year and once a habit sticks it's extremely difficult to get away from.

   Yesterday the lights were all on once again and I was turning them all off once again asking my son "why must you do this Phillip?" with no explanation as I expected. Only this time he sat on the couch and waited for me to turn them all off before turning them back on with his little hands folded in his lap and a sweet look on his face. I stepped into the garage and by the time I came back in all the lights were on. I said to him "we can't have all the lights on, no reason for it." This is the moment a year long mystery was solved and the moment I learned this repetitive habit had nothing to do with autism. Had nothing to do with what I thought was contributing to this never ending desire to light up the house at least three times a week. Also a monumental moment in our journey because he used words not given to him to let me in on this mystery behavior. Sitting sweetly on the couch he pointed up at the light and said with pride "Sun's out!"

   At that very moment not only did I get an answer but I felt a little dumb because it was so very simple. He has no understanding of the sun, he just knows it's a light in the sky and relating it to the lights in the house makes total sense. He is a little boy and small children don't see the world the same way adults do, they are all imagination and we are all reality. I am thinking about the power bill and removing light bulbs while he is just trying to create a little sunshine in house because kids are awesome and sometimes it's just not as complicated or as symptom related as we might think but without those two words I don't know if my overcomplicated, adult, realist mind would have ever figured it out. I will still be working to end this lights on mission but it's no longer a mystery and lesson learned from a four year old to stop thinking so much like an adult and try to remember it's not always autism getting in the way, it's just mom forgetting what's like to be little.

Tuesday, May 27, 2014

The thought bubbles over my head would say....

   As time goes on I am more aware of the fact people just can't fully understand our circumstance because they aren't living it. They can try very hard and they do, but to fully understand is nearly impossible. Autism is way to complicated to expect anyone to just get it. Knowing this I often think something and say something else just to either get off topic or stop myself from being in a constant state of explanation. As much as I want people to understand that constant state of explanation is also a constant state of exhaustion. However the thoughts that come into my head are all in good humor because humor is what keeps me charged, or sort of charged. Here are some things I have thought during a conversation along with what I actually say out loud.

   1. When someone says to me "I am sure he will adjust if you give him a chance." My response is always "It's really just not that simple." In my head I am thinking, have you even heard of autism?

   2. When someone says "just don't give him food until he eats what you give him." Out loud I say, "that doesn't work." In my head, sure because slowly starving my already underweight child to death to prove I rule with an iron fist is an excellent idea.

   3. "He is going to have to adjust because the world won't adjust for him." Out loud I say, "I know, it's a challenge." In my head, no shit.

   4. "Do you think he understands?" Out loud, of course he understands. In my head, he is autistic not brain dead.

   5. "Have you read any of Jenny Mcarthy's books?" Out loud, "yes I have and not a big fan". In my head, If I could afford new boobs not sure I would get them but looking that good at 41 would be great.

   6. "They say some kids snap out of it." Out loud, "I have heard that but I don't see that happening with us." In my head, he snaps but only if something changes and it's into autism not out of it."

   7. "Do loud noises cause a problem?" Out loud, "yes, his hearing is very elevated." In my head, you just blew your nose and my son disappeared, time to go.

   8. "Your so strong." Out loud, "Thank you so much." In my head, next time I make the mistake of giving him a bowl of Cheetos that ruin our entire day, I am going to call you and we will see if you can translate what I am saying through my toddler like sobbing because I am unbreakable.

   9. "He has so much energy! How do you do it?" Out loud, "he sure does!" In my head, I don't do it. I am tired as hell and if Starbucks would deliver by the gallon, I would be eternally grateful.

  10. "Einstein was autistic." Out loud, "yes, that's what they say." In my head, why does the majority of society either think someone with autism is lacking thought or mastering new scientific discoveries in their spare time? Weird...

   Humor in my head but socially adjusted comes out of my mouth because I never want to offend anyone, although this list might. It's not my intention but to just lighten the load a bit and have a laugh. I can only imagine what my son might say to people out loud when he gets older if his speech allows it. I am anticipating his social challenges will bring some tears and laughs just the same. The idea is to cling to some humor during the process.

Tuesday, April 22, 2014

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.




Friday, April 11, 2014

Don't let the research drive you mad...

   In honor of Autism Awareness month I think it's important to give people a perspective on why an autism parent might sometimes disengage from a cause conversation or grow a bit frustrated with the science/research we are given. This blog is especially important for the parents who are new to an autism diagnosis. A new autism parent will go through the cycle of convincing themselves they can find the cause and will in fact drive themselves partially insane trying. Today I am listing all of the studies I have come across just in the last two years on the cause of autism or possible connections to autism researchers have provided us with. This list is off the top of my head and I know more autism parents could add and probably triple the length of the list.

Vaccines
Genetics
Inducing labor
C-sections
Lack of oxygen during birth
Diabetes
Gestational diabetes
Flu shot while pregnant
Swine flu shot while pregnant
Flu while pregnant
Fever while pregnant
GMO
Obese mom
Obese dad
Age of mom
Age of dad
Age of grandparents
To much TV
Pollution in the air
Pollution in the water
Linoleum flooring
Chemicals in household products
Flame retardant in furniture
To much Tylenol
Tylenol given before vaccine
Yeast overgrowth in the body
Gluten intolerance
Cows milk intolerance
Taking antidepressants while pregnant
Random change in brain development between 15 and 18 months
Gods punishment for fathers sins and yes that is a real theory I come across believe it or not.

   Autism parents are not just utilizing extreme patience with their overwhelmingly amazing children, they utilizing extreme patience with the research given to us, both good and bad. One thing we know for sure is that it is not due to anything a parent may have done wrong, although according to this list a new autism parent could easily feel that way. We also know, according to research, autism can be connected to just about anything and that is exactly why everyone should be aware and understanding.


Monday, March 31, 2014

CDC's position is that vaccines...

 .
   By now most of us have been informed on the new numbers in regard to autism, a 30% increase in two years and this stirs up some questions or more of them. Some new questions and old questions which all bring no certain answers. My son will be five years old this year and hopefully able to enroll in the school district in the fall, although that's still to be determined. One of my many fears with beginning public school is of course of updated vaccine schedule. He will be due for another MMR and this is a touchy subject for most. I understand the importance of vaccines and I also understand why so many avoid it. I understand both sides of the argument but my own personal choice is to avoid until I am feel 100% satisfied my son's immune system can tolerate it. Problem is, the only way to find out is to do it and that is a risk I am not willing to take after working so hard to make progress.

  There is to much telling me my son's body will not tolerate another vaccine and I stand firm on that decision until someone can tell me beyond a doubt he will be just fine. Not data or online articles but my own child's immune system tolerance. No two are alike and that is 100% certain. In my quest to find faith in the CDC I simply asked them directly, which we all can do, and the answer was worth a share. Keep in mind, I knew I would not receive what I was asking for and I can only imagine the eye rolling on the other end but the first line of the CDC response I found interesting. Interesting because they state clearly, in regard to autism, we are perfectly safe. A bold statement that would have lead me to believe every child with autism is the same and considering something as simple as skipping a probiotic can aggravate my child's autism, I am still on my quest for faith in the CDC.

My question:  My son will be turning 5 this year and I am told due for an MMR. He received a large round of vaccines before turning 2 and in my opinion, suffered neurological damage(autism). This has not been proven or disproved. I want to protect my child from disease but I fear another vaccine will cause more harm to him. I understand the CDC research claims the vaccine is process safe and would ask you, how can you confirm my son will NOT suffer any complications from another MMR? Can you send me a statement taking responsibility for any autism related side effects, such as regression in general if we chose to move forward?  Autism is permanent and any complications could also be very permanent.
Thank you


CDC Answer:
Dear Jennifer:

 

I understand your concerns about your son receiving any product which may worsen his condition.  As you note, CDC’s position is that vaccines have no role in the cause or aggravation of autism, or autism spectrum disorders.

 

Detailed discussions about autism, vaccines, and other related concerns are here:  http://www.cdc.gov/vaccinesafety/Concerns/Autism/Index.html

 

 

MMR vaccine can cause a variety of adverse events, including fever, rash, and much less commonly, severe allergic reactions, seizures associated with fever, a blood disorder called idiopathic thrombocytopenic purpura, as well as possibly encephalitis, or brain inflammation.  The vast majority of children, particularly with the second dose of MMR vaccine, have no significant reactions at all.

 

You should discuss your concerns with your son’s doctor(s), and assess the benefits and risks for your son.  No one can offer a guarantee he will have no reaction to this vaccine, any other vaccine, or any medication for that matter.  All we can say is the risks are very small in general, but the decision to vaccinate should be made by the parent(s) and healthcare providers together.

 

CAPT Raymond A. Strikas, MD, MPH, FACP

U.S. Public Health Service

Education, Information, and Partnership Branch

Immunization Services Division

National Center for Immunization and Respiratory Diseases

Centers for Disease Control and Prevention

1600 Clifton Road, N.E., MS A-19

Atlanta, GA  30333