Saturday, June 20, 2015

A Father's Day Song I Did Not Correct

   It's Father's Day! Great dads are truly awesome and I know this for a fact because I have an absolutely great dad who in my opinion is what a dad should be in every way. In the last few days I have noticed some hostility on social media when it comes to single parents in regard to single moms potentially taking credit on Father's Day. Raising kids without fathers and for autism families this seems to be especially true. It's not an easy ride and many dads run for whatever reason but I also know there are some single dads out there raising kids with and without autism alone because a mother ran as well. Both are not uncommon to hear anymore.

   Yesterday my son sang me a Happy Father's Day song he learned at school and no I didn't tell him I am not his father.  I didn't sit down and explain his father is absent in his life and correct his song he  worked extremely hard to learn and spontaneously sing to me.  The reason beyond how hard he works to just do something like this is easy, I am both.  Just like single fathers who are busting their backs every day to do the work of two.  Moms who have to toughen up a bit and dads who have to soften up a bit are a common dynamic in our society these days.

   We get up in morning and take on the day acting as both when we need to, on little sleep and a lot of motivation.  Some of that motivation is to ensure our child doesn't feel the absence of the absent parent because we are kicking ass at being everything they need.  On Father's Day a single mom could wallow in the absence just as on Mother's Day a single father could but it doesn't create a presence to point out the absence and it certainly doesn't change what is required of us through the day.  When my son, who used to be nonverbal, busts out a Father's Day song that ends with an I love you and a smile there is no way I would take away that moment he has worked tirelessly for by pointing out an absence.  He knows a man is a father and he knows I am his mom.  He sees and understands socially that other kids have dads present because his awareness is impeccable. If he wants to sing the song he learned to mom, he gets a fist bump, a hug, and a great job!

   I say on Father's Day a single mom is allowed to celebrate her presence as both just as on Mother's Day a dad should be allowed to celebrate as both.  When you are doing both jobs to the best of your ability it's okay to recognize that and pat yourself on the back.  So, happy Father's Day to moms who didn't intend on being a father but are trying, a late happy Mother's Day to those dads who didn't intend on being a mother and never stop trying.  Also, a huge politically correct and socially acceptable happy Father's Day to dads who's entire motivation is to be the best dad a child could ever have because no matter how hard someone tries, no one can truly take the place of that.
 

 

  

  

Wednesday, June 10, 2015

Yes, Kids With Autism Are Full Of Imagination!

   It's almost time!  Almost time for the moment my son has been waiting for, for months.  Jurassic World is about to come out and I cannot wait to see how my son reacts.  You see, it's not just a 5 year old who loves dinosaurs, it's a 5 year old who loves Jurassic Park.  He has mastered the art of the velociraptor call and when he needs to feel brave, like his first day of baseball, he will turn into a T-Rex. Not just any T-Rex but the Jurassic Park T-Rex and has also mastered the sound it makes in the movie. While kicking the dirt and roaring like a dinosaur he isn't showing an autism behavior but a little boy tuning into what makes him feel brave. Autism just limits how he communicates that feeling.  He finds action figures that resemble Dr. Grant and not only watches all 3 movies, but is very fond of the extra two bonus material discs.

   He routinely mimics the film score and I can't count how many times he has asked me to drive faster because a T-Rex is chasing the car.  He attends Easter Seals Autism Center, which by the way has changed his life completely, and there is an atrium on the way in that is indeed Jurassic Park in his world.  No, this is not an autism "obsession" it is a little boy who is just flat out loves Jurassic Park that started last summer on a trip to the ocean where he watched it for the first time.  I recently bought him a Jurassic Park shirt and I have bought him dinosaur shirts many times, but this one he will not wear.  However he will carefully spread it out on display to look at because he loves it so much. I could even say overwhelmed by just how much he loves it!  I have high hopes one day he will actually put it on.  Also purchased him a set of hot wheels from the new movie but he will not open the box. It stays in tact and again, he loves it so much he doesn't want it altered in any way.  He carries it around kindly rejecting any offers to open it for him.  He has recently discovered a poster in the Dairy Queen window that advertises a Jurassic World Blizzard and although he won't eat ice cream, we stopped to get the cup and while we waited he practiced his velociraptor call, admiring the cup when he finally got his little hands on it saying "this is so cool!" then trying to mimic the brontosaurus sounds that the people around us could never understand but I know exactly what he is doing and why.

   The autism challenge with this love for Jurassic Park is going to see it.  He has never been to a movie theater and I know he may not be able to handle it at all.  I personally can't tolerate the noise level in a movie theater and he has very sensitive hearing.  Expecting him to sit and stay calm is not really a fair expectation to place on him just yet, mostly because he has been excited for months about Jurassic World and the concept of being still and quiet is still being taught.  A big question for an autism parent is always to try or not to try?  Often we know it won't work but we also have that thought of, but what if it does work?  Most likely we will skip the theater and attempt a drive-in movie where volume is under our control and getting a little excited in the car is perfectly fine but that bedtime routine of 7pm may just take us home early, long before the movie begins.  If nothing gets this little Jurassic Park fan watching it on the big screen we wait until it's released on DVD.  They say in order to understand autism you have to get into their world and that's true, but sometimes you just have to remember what it was like to be a kid and what kind of adventures imagination takes you on. Lately his 5 year old imagination has had him on adventures that I would think look a lot like this.....
                                          
This picture is not my property, I snatched it off the internet because it sums it all up, and it's cool.=)  

Monday, June 1, 2015

Why I Love It When We Don't Talk About Autism.

  First rule of autism....talk about autism is a quote I once read on Facebook and when your raising awareness this is pretty important or just trying to help the people close to you understand.  Over the last few years, moments have stood out to me as some of the greatest moments for us as a family and it completely demolishes that first rule of autism.  Maybe it's selfish but sometimes the word autism in general makes me tired and I am mother of 3 so I am tired enough.

   There has been times I have been in company that the topic of autism seems to take over, and the interest/curiosity is appreciated and important but as an autism mom, some of my favorite moments have been around people who don't talk about autism at all.  I know, shame on me for that feeling but there is no greater feeling than being around people who know there is much more to my son and our family in general than autism.  They might know if my son retreats for some quiet time why he does it and they might know if I keep a close eye and leave early why I do it but they don't talk about it and it's a bit of a friendship gift they don't even know they are giving me.  Also a gift to my son because for a while there I was afraid he would think his first name was autism it came up so much in conversation around him.  Thanks to ABA and his ability to speak a little we have confirmed he knows his name is Phillip, thank goodness!
 
   An autism parent really never mentally gets a break from autism, which is something we have very much in common with our kids, we are in it together 24/7.  We think about it from the moment the day begins to the moment it ends and many parents throughout the night, if they are coping with sleep issues. We are constantly considering routine, behaviors, what works, what doesn't, autism friendly places to go, autism not friendly places to not go, how far from home we can go, how long we can or cannot stay, and all the things that happen in between because no matter how much we think about autism through the day we can't control everything.  Things happen no matter what, no matter how hard we work at it, and no matter how many things we try to prevent.

   The moment we are with friends, family, or whoever it may be and we can just talk about life or basically any topic that doesn't involve autism, it's a moment of freedom and personally I cherish it.   The moment our children are just playing, hopefully with other children, and not hearing the word autism is very much a moment of cherished freedom for them too.  I love those moments I can watch my son play and he is just allowed to be a kid like other kids.  I also love those moments I can just be a mom like other moms. Trust me, if something is about to happen or could happen the topic will come up but another good rule to remember about autism is...you don't always have to talk about autism.

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.