Saturday, May 16, 2015

Say Yes, Even If It's Easier To Say No.


    Getting an autism diagnosis is a an emotional event to the fullest. You learn a lot about people in general and typically a time line of things happen. Your emerged in paperwork, advice, judgment, decisions, and yes you really do discover who your friends are. Going out in public is hard and people are either kind or extremely rude but most people stare no matter what. They might stare out of curiosity or can relate but say nothing or they might stare because they think your child is out of control. Either way all autism parents experience these things and we all know how it feels. Parents who aren't raising a child with autism experience a cranky child in public too but one way to relate is to imagine that event happening all the time and with no way to stop it with cranky turning to terror over something kids can typically ignore like a door shutting loudly.

    My advice to a new autism parent wouldn't be how to cope with these events but to say, do not let these things stop you. Don't allow what happens to keep you from leaving the house and trying again. Don't let rude looks dictate your right to never give up and don't let the word autism keep you confined to your home afraid to challenge the idea it holds you back.  Don't let lack of awareness and judgmental strangers keep you from helping your child to experiencing life as a child should be allowed to do. Yes, you will have times you will never want to return to a place because the last time was a nightmare but go back on a good day. Yes, you will have times someone will be cruel and ignorant but next time you might encounter kindness and awareness, go back. Yes, you might have to leave shortly after arriving but next time maybe you will get to stay a bit longer. Yes, you might end up in the middle of the zoo with a child screaming for an hour because his or sock is wet but go back again, with extra socks and the belief it might work this time.

   Routine is a powerful element and when living with autism routine is mandatory but that may not always mean limiting routine. Sometimes expanding routine can become routine. Last summer I made the decision isolation and avoiding was bad for us. I had given up on changes but the main reason was fear of those changes and what went wrong so many times. The fear of how autism would clash with changes left us with a life on lock down and it wasn't doing either of us any favors. Easier, yes but good for us...no.

   So new autism parents need to remember you didn't give your child autism and your child didn't ask for it. You have a right to experience life just as anyone else does. It's just not going to come easy and your going to have to fight for it, but it's worth the fight and it's worth creating a routine that involves stretching routine even if it's just a little at a time. The end result will bring moments it works and breaching the walls of your home on occasion to enjoy life. Your child requires a different way of parenting and a different understanding. You will learn the limits and you will learn how and when it's okay to stretch the limits. Most important, it's not your job to appease judgment or create comfort to strangers who know nothing about what they see, it's your job to fight for those moments it works. That doesn't mean you need to say yes to everything but it does mean saying yes when it might just be easier to say no.

Saturday, April 18, 2015

My Hopes Are No Different Than Other Parents.

    Here is a scenario I have found myself in many times, I tell someone my son is autistic and very quickly they jump to saying something like this "my friend has a child with autism and he does great. He graduated high school and even has a job" or "some kids with autism grow up to be just fine! They even get jobs."

   This is a fairly common response meant in a reaffirming positive way but honestly, it gets under my skin a little bit. From day one of his diagnosis I have heard "he might" and that has been stated numerous times since. Friends, family, advocates, therapists, even strangers in quick conversation and the list goes on how many people associate the word autism with "he might." "He might even speak one day." was the very first one I heard and he speaks now. The first time I heard my child say the right words at the right time the "he might" left me and the "he wills" began. This might shock people but autism doesn't make me think he won't succeed. It will be a challenge for him to get there but I have never seen my son quit or have any kind of concept he can't do something. People tend to have high hopes my son will grow up to be a functioning member of society but guess what...my hopes for my child are bigger than that, just as the day he was born and a diagnosis never changed that. I don't have expectations but hope is a necessity and I hope for much more than people think.

   I hope he encounters supportive, kind, and patient educators who grasp his potential while he is working to graduate high school. I hope he never thinks because he has autism he can't go to college or strive for far more than what people expect of him. I hope he learns to drive a car and I cry the first time he pulls out of the driveway without me. I hope he makes friends he has strong bonds with to ride in that car with him and they make good choices. I hope he wants to be active in sports and I hope he encounters programs that allow him to. I hope he discovers what he loves to do and finds a way to do it the rest of his life. I hope he falls in love with someone who cherishes him and doesn't break his heart. I hope he sees himself as far more than autism and he encounters people who see that too.

   I am an autism mom and my hopes are no different than other moms and dads. Some people along this journey might think my hopes for him are less or limited to graduating high school and getting a job but like other parents my hopes for him are far more than that. Hopefully he will feel the same way and know he is capable of much more than what people will assume he is limited to. One question no one has ever asked me is "what does he want to be when he grows up?" I would say judging by his interests, a firefighter or an astronaut but I certainly know he doesn't want to be someone with autism who somehow graduated high school and somehow got a job. I also know kids with autism want people to believe in them, like all kids do.

Tuesday, March 31, 2015

How we solved the horror of a haircut.

   If you have a son with autism you are very familiar with the horrific experience of a haircut. By the time my son was 4 years old I felt like a haircut had given us both post traumatic stress syndrome and I can imagine some of the people who tried felt the same. Our last trip the salon was pure hell and we left with half a haircut and I was determined to turn this experience around. In order to do that I had to consider all the elements that were causing horror and take over myself. Here is what we did and keep in mind extreme patience, as always, was key to success.

1. Get your own clippers and hope the ones you get are as quiet as they make them. Noise is challenge number one so limit it as much as possible.

2. Without turning them on I let him play with them. I put them on the counter and let him handle them on his own. Clippers aren't an everyday household item, it's unfamiliar so make it familiar.

3. Plug them in and turn them on while your in the same room and let the sound process. We spent an hour doing this with him on the other side of the room and I did not attempt to use them on him. Processing the sound and knowing it's not a sound of terror is important.

4. Turn them on a again and do step 3 only this time encourage touch. If it's allowed and it might not be just yet, touch the clippers to a hand or leg. Knowing he could touch by choice and it didn't hurt was a big deal. Step 3 might have to be repeated until this happens, if it happens, and this step took another hour.

5. repeat step 3 and 4 only this time touch closer to the head. Shoulder or neck and if it's allowed a lot of praise because your both getting closer or maybe even success this time.

6. If you have reached step 5 and your on your way remember the hair that falls is itchy. We do this with his shirt off and when the hair hits his skin I blow it off quickly but he stands still and giggles each time I blow the hair off.

   This is a long process that worked for us and when he agrees there is no terror involved anymore. No, he doesn't get the worlds greatest haircut but he has walked out of a few salons before with did this with much worse. No fault of the people who tried! They did the best they could given the circumstances. Sensory processing disorder is just that, a challenge to process the senses so work in the favor of that instead of against it and you just might make it through. This process took days and no promise it works but you never know what will until you try.

Monday, March 30, 2015

10 Things You Can Do For Autism Awareness Month

   Autism awareness month is around the corner and although the world lit up in blue is nice, there are many ways to support autism that are far more helpful than purchasing a light bulb.

1. Talk to your kids about autism and ask what they know about it. Many schools don't include kids with autism as much as they should, making it difficult for kids to even get to know someone with autism or even creating the idea they shouldn't. Encourage them to learn more because peers have an enormous impact.

2. Find out if your school supports inclusion because it's good for everyone. If they don't, teach your children that no one likes to be the odd man out, ever, and let the school know you support it.

3. Look up autism friendly activities in your community and get involved. You don't have to give money and you will learn much more giving your time. You might also find there aren't enough of them and can help change that.

4. See a parent with a child in a meltdown, be KIND.
I once had to carry my son out of a store, he's half my size, and a while he was screaming and kicking I held a door for a woman who watched me in disgust and never said thank you. Same woman followed us to the parking lot and watched to see how I would handle the situation. Never be that woman! Hold a door for a struggling parent and smile because it matters in that moment more than most people understand.

5. Call your local therapy programs and ask if there is anything you can do.
These programs are always in need of supplies in some way. Bubbles, craft supplies, or even a non noisy toy donation can help. ABA therapy is proven to make an impact and those programs need support.

6. Donate sensory friendly toys to places with waiting rooms.
I can't tell you how many waiting rooms we have sat in that have nothing my son is interested in to occupy him while we wait. I can tell you how many have had sensory friendly items and it's two waiting rooms in five years. People stare because he won't sit still but don't realize his motor skills don't allow him to sit and color with a box of broken crayons.

7. Don't get all weird when someone tells you their child is autistic.
I have watched people get weird when I say autism. They look again at my son and I can see the inner pity stewing like they just discovered he has a disease. They try not to say the wrong thing or they have no idea what to say and it's gets weird. Just relax, autism is not uncommon these days.

8. Ignore the description of autism the media gives us.
Autism is different and each person is an individual. Routine and detail is a given but don't assume someone with autism is withdrawn or can't socially connect. That is the most damaging and dehumanizing description of autism we all hear all the time and be aware it's false.

9. Like an autism awareness page.
You can learn a lot from just reading information on a lot of the pages and there is a ton of them. Some have fans asking questions and others try to help or give advice which is a really good way to see some of the challenges, triumphs, differences, and similarities. I personally have been given great advice on my own awareness page by parents who do and do not have children with autism.

10. Think now and think local.
Autism Speaks is huge and they do a lot but the majority of Autism Speaks budget goes towards research. Research is good but the reason my son will play baseball this year is because a group of people created a program locally for kids to have that chance now and I can bet when we are all out there watching our kids have fun no one will be thinking about research. Don't get me wrong, a blue light on will still let someone know you are aware and that's certainly a good thing but any of the options above make an impact now while science sorts out the rest.

Friday, February 27, 2015

Autism made me "that mom."

    "That mom" is something all moms or dads don't want to be. That mom who's kid is screaming and won't stop. That mom who can't seem to get her child to calm down or sit still. He child is laid out on the floor like a giant X marks the spot and refusing to get up or under the table at the restaurant waiting for someone to drop their guard and move a leg creating an opening to escape. That mom who's child is noisy, fidgety, running, and just generally drawing attention in a way that makes mom look like "that mom." Refusing to hold a hand in the parking lot, kicking and screaming on the way out of a department store, and when "that mom" calls thier name or speaks to them, they just appear to ignore her. "That mom" that appears to have zero control or is failing as a parent and needs to lay down the law. No one wants to be that parent but some of us don't have a choice.

   I am and many others are "that mom" or that dad. Every time we make a public attempt to do something fun I am that parent. I have to say, autism has really taught me time and time again being that mom is not so bad. In fact it's a bit freeing to know no matter how the situation appears there is always so much more going on and just being there to begin with makes me feel complete joy. I know most of the time I have very little control because the world around him is what causes some of those that mom moments. I do refuse some things but it's never for the sake of others and always based on what he might face and have to manage himself through. I have gotten so many that mom looks over the years I am completely desensitized to it and it's a pretty awesome way to be. Don't get me wrong I don't like it when he gets a "that kid" look but as a mother I am extremely comfortable with my efforts and guidance. Yes, when he is spread out on the floor like a giant X marks the spot in Panera, like he was the other day, I am not concerned because he just ate a giant cookie and has managed to process for a full 20 minutes his environment. I am also that mom who lets him eat a giant cookie for lunch because in our case, eating something is far more important than eating only healthy food. I am sure people thought it was the giant cookie that made him restless but it was mostly the environment. A little bit cookie too but I am that mom so who cares!

   We put ourselves as parents under way to much pressure to appease the world around us and are judged all the time by our kids behavior. Everyone has an idea of what we should or should not be doing but if our kids are happy, kind, loved, safe,  and making attempts to maintain we are doing it right no matter how we are doing it. I am grateful autism has taught me to be that mom and be totally comfortable with it because I get to enjoy my son to the fullest and I know I am his hero because I am that mom too. We all are.

Sunday, January 18, 2015

It's Not Always Autism Related

   The moment an autism diagnosis is in your hands it is very easy to get sucked into the idea habits or behaviors a child has are autism related. After all in time you notice every single thing your child does is documented and picked apart. Every paper you fill out puts your child under the microscope of a social standard and age expectation, it's overwhelming for any parent. A recent preschool screening made me want to crawl in a hole with hundreds of questions and a result that was 15 pages long picking apart my child in every possible way. 15 pages of people deciding what my child is all about in a very short time spent and it's easy to think they know because they are professionals but the reality is, he is a kid. A kid with funny habits and behaviors that are almost always credited to his diagnosis, especially when we all forget he is really just a kid.

   My son has a habit of sometimes eating a frozen waffle right out of the freezer and because he has some sensory challenges this must be autism related. When I tell people this or they see him eat a frozen waffle frozen everyone assumes this must be an autism effect and up until the two days ago I assumed this too. After school my 16 year old came through the door with a couple of his friends. Typically they grab a snack and head out the door and this day a he brought a friend who has only come around a few times. All of them hungry and when someone mentioned frozen waffles he let his hunger be known. My daughter handed him a frozen waffle and that hungry 16 year old who is not autistic ate the waffle right out of the freezer, the way he likes it. I realized at that moment someone who could tell me why was standing in my kitchen and his answer was simple, "it tastes better that way!"

   I have personally never tried a waffle this way and it's against the way I am programed to eat them because I am socially adjusted to eat them the right way. So socially adjusted I just made a statement that declares the instructions on the box to be the "right way." Shame on me for that! The right way is the way a person likes it and I was elated to see a kid eat a waffle and hear the reason why. Which sounds a little off but when everything your child does is judged a moment like that is a moment your grateful for. It's a moment of clarity and a simple reminder that not everything happening is unexplainably different or a sensory related behavior.

   A child with autism is certainly against the grain but sometimes it's really just because "It tastes better that way!"

Wednesday, December 24, 2014

How The Grinch Nearly Stole Christmas

  
   There is a fine line between an interest and obsession and the Holiday season I forgot about this line. For the past few weeks my son has been watching The Grinch Who Stole Christmas and last night while he was watching again the reality hit me, the Grinch could very much steal Christmas if I allowed the movie to play one more time or I could be to late.

   You see typically a five year old can watch a movie on repeat and carry on as usual just enjoying a favorite but my son is not typical and yes, I forget this from time to time. Scripting is when a person acts out scenes from movie, games, etc and often exactly as they watched it. Word for word and can come out any time over and over. It's called scripting but I call it stuck because stuck is exactly what happens to my son. Stuck in a movie and unable to focus on other events of the day. Last night after putting my son to bed I put the Grinch away and good chance I will never play it again. As I have done with a couple of other movies in the past year because it literally steals my child. This morning I learned a hard lesson once again because I allowed him to watch it way to many times and that lesson came in the form of a meltdown. A meltdown like I have not seen in a very long time and during that meltdown he would have moments of catching his breath quoting the Grinch. No, he did not know I put the movie away and no he did not go into a meltdown over anything that had to do with it, he just lost ability to function. This has happened before with The Little Rascals and if I even mention that movie he begins to "script" again, even months later.

   He likes the Grinch but the line was crossed and repeat became obsession. A tricky element with autism or in our home because like is good but knowing when to back off is even better. A person might wonder what happens when I take something like this way. He is a little boy and typically if you take something away a little boy likes he would grow upset but he does not. What happens is he slowly returns and is able to get unstuck, and it takes only a few days for the scripting to stop. Very much like I have done him a favor and he breaks free.

   I can only write about how autism effects my son and they say no two are alike but I have learned through this journey many kids do really share similar traits, habits, and even health circumstances. Somewhere out there in the online world might be a parent who's child has crossed the fine line of like to obsession and the only talking they hear lately is Pixar scenario, over and over again. If one person can read this and it helps, it's completely worth sharing. Merry Christmas and may the meltdowns be few (hopefully not at all) and the blessings be plenty!